Wishing everyone a very merry Christmas!
Hope the holidays are filled with family, fun, festivities, and good food!
My holiday hasn't turned out as I planned, (at all) but I am trying to find that holiday silver lining!
A trip to the hospital and return of some pain...and a few new added elements has made this a very different Christmas than I had spent weeks and weeks planning. But yet again, my planning means very little when it comes to life with chronic illness. Learning to live and deal with these bumps and hurtles with grace is all I CAN do.
This is ME!
Tuesday, December 24, 2013
Wednesday, December 18, 2013
Our circumstances aren't what truly defines us, our CHOICES do!
I try to add a practical element to each of my blogs that in some way may bless someone...somewhere...whether their lives have been changed by a cruel disease or not... After all, we are all in this life journey together, just on many diverse paths.
We each tackle life's battles and hopefully only becoming stronger by each and every hurtle. It's not just a cliche for me....though many days I can't fathom it in that moment...I do know, deep down, that what doesn't kill you, CAN make you stronger. BUT that 'can' isn't an automatic 'does'!......An awful lot depends on how we choose to respond to our circumstances. I cannot wish away the life I've been given. I could fall apart, crumble, and hide in a corner and wait to die. In your life, you could sulk about a bad marriage, rebellious kids, a horrible boss, money woes, painful regrets, daily life stress, or the plethora of variables that you encounter on life's journey. But I hope that you have chosen joy instead. I hope that you, too, can choose to make the best of your circumstances. I never want to be caught settling for second best in my own life or following the status quo. If I'm going to be stuck in my bed in my room, then I want to be the best darn sick lady you ever did see! If I'm only allowed to stand for 2, 5, or 10 minutes on any given day, I can guarantee, I will be making the best of that time!
I hope to encourage someone, someday, somewhere to live their life differently, fuller, more meaningfully, and make a change TODAY with benefits that will last a lifetime. Living life with NO regrets.....what a blessing that would be to yourself and those around you. If your life is already riddled with regret, why can't you stop that cycle now? As I lay here today, in quite a bit of pain, I am trying to think of someway to do something meaningful from where I am, in this moment. My plans are changed and I may be sad for a moment, but my spirit and heart will not be changed by this circumstance (illness). I hope if something isn't going your way, maybe your day or plans have changed, maybe someone or some circumstance has disappointed you, choose to not let it change your disposition and choose to make something wonderful happen instead. After all, our circumstances don't define us, our choices do! I have met many people who have become a victim of their circumstance, but as a living testimony.....it is my CHOICE on how I let those circumstances define me. Yes, I've changed as a person because of illness, but no disease will steal my joy, my disposition, my faith, my will, or my heart unless I let it!
Are the circumstances of your life stealing from you? Take back the control....take back your choice.....take back your JOY! Don't wait for the new year's resolution, let's all start living with NO REGRETS, right now, today!
Tuesday, December 17, 2013
Quick update
I had a wonderful few weeks! They have quickly ended as quickly as they had come. However, I got to enjoy and do quite a few things that I wasn't expecting. That was a little Christmas joy just for me!
I dislike feeling so poorly and knowing I might miss out on a few activities this holiday. The dizziness seems to be one of the harder things to overcome to be able to really laugh, interact, and fully enjoy the family. I'm hoping I can have a few breaks of it this next week, and not have to 'fake' a lot of smiles for the kids or my extended family.
I did get to finish all my projects, all the online shopping, and all the wrapping......so I do feel really good about that. As always, my main goal is just to not end up in the hospital for Christmas. I try not to let that thought get me too stressed. Just 8 days to go!
We are also still waiting to hear from insurance about our next step. They have told us it will not be till some time in January for final word on that.
I'm just looking forward to Friday night when my children and dear husband is off of work-school for an entire week to spend celebrating all together! I do so love our family time!
I dislike feeling so poorly and knowing I might miss out on a few activities this holiday. The dizziness seems to be one of the harder things to overcome to be able to really laugh, interact, and fully enjoy the family. I'm hoping I can have a few breaks of it this next week, and not have to 'fake' a lot of smiles for the kids or my extended family.
I did get to finish all my projects, all the online shopping, and all the wrapping......so I do feel really good about that. As always, my main goal is just to not end up in the hospital for Christmas. I try not to let that thought get me too stressed. Just 8 days to go!
We are also still waiting to hear from insurance about our next step. They have told us it will not be till some time in January for final word on that.
I'm just looking forward to Friday night when my children and dear husband is off of work-school for an entire week to spend celebrating all together! I do so love our family time!
Wednesday, December 11, 2013
Really Quick Update!
Just a quick update:
My surgery was canceled for this month. Insurance approval for the second stage didn't come through, so it didn't make sense to move forward with getting a port placed.
They are telling us it's a long shot to get approval, but won't rule it out 100% yet.
While I have not made my final decision yet to go ahead with the trial or not, I want that decision to be MY decision and not one made for me by someone at a desk. I understand their hesitation, since I will be the first ever...but someone has got to be the FIRST, right?
I'm kind of relieved to not have to worry about this over the holidays and will pick back up on the stress after the new year!
My surgery was canceled for this month. Insurance approval for the second stage didn't come through, so it didn't make sense to move forward with getting a port placed.
They are telling us it's a long shot to get approval, but won't rule it out 100% yet.
While I have not made my final decision yet to go ahead with the trial or not, I want that decision to be MY decision and not one made for me by someone at a desk. I understand their hesitation, since I will be the first ever...but someone has got to be the FIRST, right?
I'm kind of relieved to not have to worry about this over the holidays and will pick back up on the stress after the new year!
Tuesday, December 10, 2013
Something has been......different!
Don't know what is happening...and I will not allow myself to get too excited (yet again, just to be foiled). However, something is happening inside of my body. Over the last 6 weeks, I've been having a steady upward climb. The first climb upwards IN ALMOST 3 YEARS......NO.....I'm not as good as I've been in 3 years, but the last 3 years have been a steady DECLINE...never, ever ascending.
I wrote a brief note about this unusual phenomenon a month ago. As soon as I had typed the words, the pain returned, and I was quickly jolted back into my reality. However, the decent came to a sudden holt, and I plateaued ...again...something that never happens in my world.
I contacted my doctor last week about the developments. I was quickly reminded that while it may be wonderful to experience a brief relief, it will not be permanent. As typical with many degenerative diseases, a patient can have signs and symptoms of improvement or even appear to be going into remission. However, they are often short lived and not long lasting. The conversation was followed up with an: "I'm happy you have had some relief, but I'm very sorry, this will not be permanent.".
I know the reality of my situation, deep down....but something inside of me...still HOPES, still prays, still believes that this is NOT my life...and the horrible existence, pain, disability, and unbearable limitations of MY life are not mine forever. I've fallen for this before only to be riddled with unbelievable disappointment. My husband...more than myself....has been broken hearted to see that not only did I not improve, my condition declined after a spell of 'good days'. At some point you must have some 'acceptance' of your circumstances or you will literally go crazy each and every day!
I haven't been this mobile since July of 2012. I would say it's a Christmas miracle. I'm using my new found freedom to make a little extra Christmas cash by selling the kids toys and clothes online and a few things I am unable to enjoy anymore due to my declining health...but I still cannot part with the sewing machines and tennis skirts!!!!!
How have I improved?
1) The most important improvement is the change in my constant pain. As I've mentioned before, I've been in a constant state of pain almost 24-7 for more than 1 1/2 years now. (and intermittent the year and half before that). Just the slightest removal of this internal pain can allow me to not only get my head off the pillow, think clearly, have energy, but only be limited by my inability to move about.
2) My stand time hasn't changed, but my walk-around time has gone up. I cannot stand in one place, but I can move around a lot more freely. I can get own water, throw in a load of laundry, get on the floor for a bit, and even help the kids get ready for school. Before I realized what was happening, I had been 'walking around' for 10-15 minutes. Yes, I did have to PAY the piper for that time up and spend time recuperating for a few hours...but worth every second. I will be up and about...then need hours to let my heart and blood flow readjust. It's literally worth every second!!!!!! I'm controlling my pain..instead of it controlling ME!
3) My appetite has returned WITH A FURRY! We will leave it at that!
4) My blood pressures and heart rates are leveling off. They are still swinging, but not to the extremes that has led to the intense pain I experience. My special type of pacemaker isn't going off as often, either.
5) I have been able to get out of the house!!!!!!!!!! THE BIGGEST AND BEST side effect of this little bright spot. I usually feel too ill to even consider leaving the house. It's still a huge hassle with my special chair and having to keep my legs on the dash and up at all times...but it has been wonderful. I must say, though, since 2 years ago when I was out and about, holiday shoppers haven't exactly 'grown in kindness'. :)
6) I can breath much better which allows me to talk more freely. (poor David!) This has made the intense headaches lesson, the dizziness is somewhat better, and the concentration seems sharper.
Yes, with any change...wether good or bad....there comes a new kind of anxiousness or fear, if you will. I have played this game before. I know it can all go away any second. I know that amidst my pile of clothes, unwrapped gifts, or picture taking that it can vanish just as it has each and every time before. This is one of my most difficult 'fears', as I've described before. Every activity is coupled with the nervousness that I won't finish it or that tomorrow will be back to the normal 'Melanie'. I spent some time yesterday just making sure I was being consciously GRATEFUL...nothing else....nothing more....just grateful. Let me tell you first hand, it's so much harder than it sounds when you know it will end any second. I meditated on somethings that I knew would allow me to just ENJOY! Wow, I wonder if we did that in other areas of our lives, if we could walk in a true joy that is unlike any fabricated type of contentment. Good food for thought, especially during the buying-giving-accumulating time of year!
I wrote a brief note about this unusual phenomenon a month ago. As soon as I had typed the words, the pain returned, and I was quickly jolted back into my reality. However, the decent came to a sudden holt, and I plateaued ...again...something that never happens in my world.
I contacted my doctor last week about the developments. I was quickly reminded that while it may be wonderful to experience a brief relief, it will not be permanent. As typical with many degenerative diseases, a patient can have signs and symptoms of improvement or even appear to be going into remission. However, they are often short lived and not long lasting. The conversation was followed up with an: "I'm happy you have had some relief, but I'm very sorry, this will not be permanent.".
I know the reality of my situation, deep down....but something inside of me...still HOPES, still prays, still believes that this is NOT my life...and the horrible existence, pain, disability, and unbearable limitations of MY life are not mine forever. I've fallen for this before only to be riddled with unbelievable disappointment. My husband...more than myself....has been broken hearted to see that not only did I not improve, my condition declined after a spell of 'good days'. At some point you must have some 'acceptance' of your circumstances or you will literally go crazy each and every day!
I haven't been this mobile since July of 2012. I would say it's a Christmas miracle. I'm using my new found freedom to make a little extra Christmas cash by selling the kids toys and clothes online and a few things I am unable to enjoy anymore due to my declining health...but I still cannot part with the sewing machines and tennis skirts!!!!!
How have I improved?
1) The most important improvement is the change in my constant pain. As I've mentioned before, I've been in a constant state of pain almost 24-7 for more than 1 1/2 years now. (and intermittent the year and half before that). Just the slightest removal of this internal pain can allow me to not only get my head off the pillow, think clearly, have energy, but only be limited by my inability to move about.
2) My stand time hasn't changed, but my walk-around time has gone up. I cannot stand in one place, but I can move around a lot more freely. I can get own water, throw in a load of laundry, get on the floor for a bit, and even help the kids get ready for school. Before I realized what was happening, I had been 'walking around' for 10-15 minutes. Yes, I did have to PAY the piper for that time up and spend time recuperating for a few hours...but worth every second. I will be up and about...then need hours to let my heart and blood flow readjust. It's literally worth every second!!!!!! I'm controlling my pain..instead of it controlling ME!
3) My appetite has returned WITH A FURRY! We will leave it at that!
4) My blood pressures and heart rates are leveling off. They are still swinging, but not to the extremes that has led to the intense pain I experience. My special type of pacemaker isn't going off as often, either.
5) I have been able to get out of the house!!!!!!!!!! THE BIGGEST AND BEST side effect of this little bright spot. I usually feel too ill to even consider leaving the house. It's still a huge hassle with my special chair and having to keep my legs on the dash and up at all times...but it has been wonderful. I must say, though, since 2 years ago when I was out and about, holiday shoppers haven't exactly 'grown in kindness'. :)
6) I can breath much better which allows me to talk more freely. (poor David!) This has made the intense headaches lesson, the dizziness is somewhat better, and the concentration seems sharper.
Yes, with any change...wether good or bad....there comes a new kind of anxiousness or fear, if you will. I have played this game before. I know it can all go away any second. I know that amidst my pile of clothes, unwrapped gifts, or picture taking that it can vanish just as it has each and every time before. This is one of my most difficult 'fears', as I've described before. Every activity is coupled with the nervousness that I won't finish it or that tomorrow will be back to the normal 'Melanie'. I spent some time yesterday just making sure I was being consciously GRATEFUL...nothing else....nothing more....just grateful. Let me tell you first hand, it's so much harder than it sounds when you know it will end any second. I meditated on somethings that I knew would allow me to just ENJOY! Wow, I wonder if we did that in other areas of our lives, if we could walk in a true joy that is unlike any fabricated type of contentment. Good food for thought, especially during the buying-giving-accumulating time of year!
Thursday, December 5, 2013
PART 4: FEAR- What's it really like to be chronically ill
This is part 4 in the series 'WHAT'S IT REALLY LIKE TO BE CHRONICALLY ILL?"
I've been writing piece by piece about the real side of chronic illness for a young woman whose life was turned upside down in a second. This shows the more vulnerable side of being sick, as well as, a more intimate look into the life of a family who has to battle true illness each and every day.
FEAR:
From the very first day someone gets the news of a potential, chronic illness, no matter to what severity it may be, I'm sure 'fear' is one of the very first emotions that plagues their being. Fear comes in all different shapes and sizes.
-Fear of the unknown
-Fear of death
-Fear of the changes to come
-Fear of how this will change your family or your own life
-Fear of the worst case scenario
-Fear of not being strong enough to handle what may be on the horizon
-Fear of pain
-Fear of how you will pay for everything or continue to work
-Fear of the pending treatments, needles, medicines, tests
-Fear that every day will forever be different than you had planned
Fear is a very powerful emotion. It's one that could potentially consume. The day to day fear of the unknown, in itself, is enough to drive any sane person to the brink of insanity. Introduce the fear of potential death, and I believe you have the perfect recipe for emotional disaster. Fear is a very understandable and acceptable emotion in the face of chronic or even terminal illness. You cannot deny yourself the reality of your situation or refuse to acknowledge the fear of the unknown. However, with its tendency to over take, fear must not be allowed to permeate the thought process and decision making, or dominate your frame of mind.
Personally, I have been faced with the reality of pending death more than once in the last 12 months. I can honestly say, I've had true fear come to fruition. While 'facing death' is another topic I will write about at a later date, those few experiences not only helped shape my new perspective .....but also put fear back on the front burner, so to speak. No matter how hard I had tried to push that dark, dismal emotion deep down in the abyss, it reared its ugly head once again. I was virtually forced into dealing with my greatest 'fears'.
How do I deal with 'fear'?
As I've mentioned in past posts, I hate, loathe, and abhor the uncertainty of my chronic illness. There is a fear of: what the day may hold, what event I will miss, how much pain will today yield, if today I will be going back to the hospital, if my vital signs will plummet, if today is 'the day', if I will get worse, and yes, even the fear of getting a little better without knowing if it is permanent or not. Fear, fear, fear!
First and foremost, I cannot let these thoughts consume me or become part of my daily thought process. I conceived a rather 'silly' little trick about 2 years ago. This 'silly' trick has sense become my saving grace in the face of fear! I allow myself to crumble, break down, pray, plead with my God, or even fall to pieces ONLY and only during my shower time. When the shower is over, I must then pick myself back up, modify my thoughts, and re-direct back to my purpose for the day. Yes, I've allowed myself to have those emotions, but the pity party ends the second the water is turned off. I've discovered that this gave me a chance to cry, be fearful, or even pout for a minute without letting it continue into a long drawn out process or become part of my essence. Fear is real, but it has its place. For me, that place is every few weeks during a nice luke-warm shower in my little old lady shower chair.
Christmas is the time of year that fear tries to creep into my daily thoughts more frequently. This will be the third Christmas dealing with my illness. Being my favorite time of the year, the possibility of going to the hospital over the holidays again or even WORSE......invades my holiday joy! I am trying very hard this year, just like in years past, to not allow the clutches of fearfulness to have a place in my consciousness or rob me of any Christmas magic! As a mother of 3, I don't want anything to ruin my children's holiday. When things are so far beyond your control, fear can emerge unexpectedly. For me, staying busy planning, wrapping, and internet shopping all from my bed has helped keep those unwelcome thoughts at bay.
How can any of this be applicable for someone who isn't dealing with fear of illness, pain, hospitalization, or even death? Fear plays a part in everyone's lives. I know the holidays can produce worry, which can easily turn into trepidation. If many of your thoughts lead into the same fear over and over, and you begin to see a pattern of hesitation or worry, it may be time to displace those tendencies that lean towards fear. Find YOUR 'shower time'. And when that time is up, pull yourself up by your boot straps, put on your big girl-boy pants, release the power fear is taking over your life, and say: "I'm going to be amazing today". (no matter if it's only from the bed, the sofa, at work, with your children, with your spouse, in the kitchen, or during errands). I will not fear, dread, or worry about which I cannot control. I do feel those things, naturally, from time to time because it is real. But hopefully, you....like me....will stand on the fact that we are not promised tomorrow, but we sure can be a 'Rock Star' TODAY!
So, please excuse this 'rock star' for now, because she has plans to wrap some gifts for her precious family and meditate on the blessings that I have HERE and NOW!
I've been writing piece by piece about the real side of chronic illness for a young woman whose life was turned upside down in a second. This shows the more vulnerable side of being sick, as well as, a more intimate look into the life of a family who has to battle true illness each and every day.
FEAR:
From the very first day someone gets the news of a potential, chronic illness, no matter to what severity it may be, I'm sure 'fear' is one of the very first emotions that plagues their being. Fear comes in all different shapes and sizes.
-Fear of the unknown
-Fear of death
-Fear of the changes to come
-Fear of how this will change your family or your own life
-Fear of the worst case scenario
-Fear of not being strong enough to handle what may be on the horizon
-Fear of pain
-Fear of how you will pay for everything or continue to work
-Fear of the pending treatments, needles, medicines, tests
-Fear that every day will forever be different than you had planned
Fear is a very powerful emotion. It's one that could potentially consume. The day to day fear of the unknown, in itself, is enough to drive any sane person to the brink of insanity. Introduce the fear of potential death, and I believe you have the perfect recipe for emotional disaster. Fear is a very understandable and acceptable emotion in the face of chronic or even terminal illness. You cannot deny yourself the reality of your situation or refuse to acknowledge the fear of the unknown. However, with its tendency to over take, fear must not be allowed to permeate the thought process and decision making, or dominate your frame of mind.
Personally, I have been faced with the reality of pending death more than once in the last 12 months. I can honestly say, I've had true fear come to fruition. While 'facing death' is another topic I will write about at a later date, those few experiences not only helped shape my new perspective .....but also put fear back on the front burner, so to speak. No matter how hard I had tried to push that dark, dismal emotion deep down in the abyss, it reared its ugly head once again. I was virtually forced into dealing with my greatest 'fears'.
How do I deal with 'fear'?
As I've mentioned in past posts, I hate, loathe, and abhor the uncertainty of my chronic illness. There is a fear of: what the day may hold, what event I will miss, how much pain will today yield, if today I will be going back to the hospital, if my vital signs will plummet, if today is 'the day', if I will get worse, and yes, even the fear of getting a little better without knowing if it is permanent or not. Fear, fear, fear!
First and foremost, I cannot let these thoughts consume me or become part of my daily thought process. I conceived a rather 'silly' little trick about 2 years ago. This 'silly' trick has sense become my saving grace in the face of fear! I allow myself to crumble, break down, pray, plead with my God, or even fall to pieces ONLY and only during my shower time. When the shower is over, I must then pick myself back up, modify my thoughts, and re-direct back to my purpose for the day. Yes, I've allowed myself to have those emotions, but the pity party ends the second the water is turned off. I've discovered that this gave me a chance to cry, be fearful, or even pout for a minute without letting it continue into a long drawn out process or become part of my essence. Fear is real, but it has its place. For me, that place is every few weeks during a nice luke-warm shower in my little old lady shower chair.
Christmas is the time of year that fear tries to creep into my daily thoughts more frequently. This will be the third Christmas dealing with my illness. Being my favorite time of the year, the possibility of going to the hospital over the holidays again or even WORSE......invades my holiday joy! I am trying very hard this year, just like in years past, to not allow the clutches of fearfulness to have a place in my consciousness or rob me of any Christmas magic! As a mother of 3, I don't want anything to ruin my children's holiday. When things are so far beyond your control, fear can emerge unexpectedly. For me, staying busy planning, wrapping, and internet shopping all from my bed has helped keep those unwelcome thoughts at bay.
How can any of this be applicable for someone who isn't dealing with fear of illness, pain, hospitalization, or even death? Fear plays a part in everyone's lives. I know the holidays can produce worry, which can easily turn into trepidation. If many of your thoughts lead into the same fear over and over, and you begin to see a pattern of hesitation or worry, it may be time to displace those tendencies that lean towards fear. Find YOUR 'shower time'. And when that time is up, pull yourself up by your boot straps, put on your big girl-boy pants, release the power fear is taking over your life, and say: "I'm going to be amazing today". (no matter if it's only from the bed, the sofa, at work, with your children, with your spouse, in the kitchen, or during errands). I will not fear, dread, or worry about which I cannot control. I do feel those things, naturally, from time to time because it is real. But hopefully, you....like me....will stand on the fact that we are not promised tomorrow, but we sure can be a 'Rock Star' TODAY!
So, please excuse this 'rock star' for now, because she has plans to wrap some gifts for her precious family and meditate on the blessings that I have HERE and NOW!
Tuesday, December 3, 2013
A THANKSGIVING surprise and blessing for me!
Thanksgiving day, my mother drove 14 hours to show up on our doorstep to pull off one of the biggest surprises EVER! I'm not an easy person to surprise, anyway, so this was huge! I cried like a little baby as I held her in my arms. It had been many months since I had seen her beautiful face and given her a big hug. None of us knew that she was coming, and we all hugged and laughed at the sheer joy of it all. It was my own little Christmas miracle!
My mother and I even got to go to a store together for the first time in over a year. We were not thrilled with the complications of using a wheel chair in most stores, but the joy of being together overshadowed the reality of our very real circumstances. As former 'shopping buddies', we've had to curtail our disappointment in missing out on all those former, wonderful experiences as we begin to make new memories in our new situation. I was blessed....blessed.....blessed.....to be able to have a Thanksgiving to remember!
BLOG UPDATE:
I'm still working on the piece written by my family's prospective on what it's like to have a sick parent-wife-etc. It's a harder piece to write, and I've had a tough time getting through it. I may finish up a few other things I was working on before I decide to tackle that one again.
Things have been going pretty decent, if you would ever call this sickness-decent. I'm still having less pain than usual, and AS ALWAYS, and true to my nature....pushing the envelope! If I'm given a chance to be up more, then I'm going to run with it. (figuratively speaking, of course!)
The holidays always give me that extra spring in my step, and I'm enjoying all the preparation, the shopping, the carols, the wrapping, and the holiday specials on TV.
Wednesday, November 27, 2013
I cannot control my circumstances. However, I'm in complete control over my attitude, my thought process, and my disposition. I'm choosing (most days) to not let my disease control ALL of me. It can never rob me of my inner peace and joy, unless I let it. What circumstance in your life are you allowing to steal YOUR joy and contentment?
Tuesday, November 26, 2013
'Tis the season to be: THANKFUL!
As Thanksgiving arrives this week, I, like many others, am reflecting on gratefulness. Despite my many limitations and 'dumb luck', I often feel overwhelmed with a sense of intense gratitude. I'm often very deliberate in showing my gratitude to people who may have blessed me, my precious family, my physicians, and the many who have sacrificed their time and energy to help me and my family. While it's often easy to express gratefulness to those who 'help' or show love, it's often a bigger challenge for many to truly be grateful in the face of adversity or even less than ideal situations.
This goes a lot along the lines of my constant theme...choosing joy or finding that silver lining. Gratitude, much like joy, is a choice! Do we choose to be grateful for all the many, many blessings we have or are we always focusing on the lack, the missing, the disappointments, or the regrets? I believe gratitude goes hand in hand with contentment. I believe it's our choice! I've chosen to be thankful, not just on 'turkey day' but everyday. I have so many things to celebrate and be grateful for this year! Yes, I have a very hard time hearing others have the privilege to give thanks for their 'health'. It will always make my heart cry just a little...that at 39 years old....I cannot say I have my health. However, I still get to arise each and every morning, put my feet on the floor (if even for a few minutes), and make new memories! Just yesterday, I turned on my tunes and smiled to myself as I listed to: "Life is a highway, I'm gonna ride it all night long." I am CHOOSING to be grateful for each day and each special moment!
Just a FEW things I'm GRATEFUL for this Thanksgiving: (my real list would turn this into a book, instead of a blog)
-I'm STILL here!!!!!!
-I get to impart wisdom and speak into my children's lives on my 'good' days.
-I've been able to get back into the game, mentally, over the last 6 months as my body has gotten somewhat stronger, and I've been able to get my head off the pillow.
-the new friends I've made from far away, and the 'old' friends that have stuck by us.
-the days I get to be up and about more than a few minutes!
-I got to go to Target this month after many months of not leaving my 'prison'.
-for my new wheelchair that allows me to sit up.
-watching my children grow more resilient each and every month.
-for my darling, precious husband who has become stronger than he every knew was possible.
-for the in-laws who moved here and have taken the children to all their events so they can have a more normal life again.
-for all the notes, gifts, cards, messages, and care packages that have come my way to lift my spirits.
-for the special friendship with my mother that has grown even deeper in the last 2 years.
-the days I can sit up and feel apart of 'it all'.
-the quiet moments when I'm all alone with just my thoughts to focus on what I want to be one day..when I grow up.
-for all the prayers and support of many----probably more than I even realize!
-for the gorgeous view out of my bedroom window as each season changes.
-for my pacemaker that has saved my life more than once.
-for the jolly Christmas carols that bring a silly smile to my face each time I hear them.
-for the joy that God gives me ...that is truly my strength.
-reconnecting with a dear friend I hadn't seen in many, many years.
-the little, tiny small things that remind me that being a mother is the best job in the world!
-access to email, texts, and the gift of electronic communication on the days I cannot talk.
-cookies...yummy cookies...on a bad day!
-for the days my children surprise me when they show compassion and empathy beyond their years.
-encouragement that seems to come-just in time!
-for the sweet lady who comes all the way to my house to do my hair, so that I can keep some femininity in the face of illness.
-Christmas decorations and the ambiance of the evening lights.
-for my partner in life....who has made me more grateful for him each and every day!
-and...........so so so so much more!!!!!!!!!!!!
Count your blessings....ONE BY ONE!!!!!!!!!!!!!!!!! Happy Thanksgiving!
This goes a lot along the lines of my constant theme...choosing joy or finding that silver lining. Gratitude, much like joy, is a choice! Do we choose to be grateful for all the many, many blessings we have or are we always focusing on the lack, the missing, the disappointments, or the regrets? I believe gratitude goes hand in hand with contentment. I believe it's our choice! I've chosen to be thankful, not just on 'turkey day' but everyday. I have so many things to celebrate and be grateful for this year! Yes, I have a very hard time hearing others have the privilege to give thanks for their 'health'. It will always make my heart cry just a little...that at 39 years old....I cannot say I have my health. However, I still get to arise each and every morning, put my feet on the floor (if even for a few minutes), and make new memories! Just yesterday, I turned on my tunes and smiled to myself as I listed to: "Life is a highway, I'm gonna ride it all night long." I am CHOOSING to be grateful for each day and each special moment!
Just a FEW things I'm GRATEFUL for this Thanksgiving: (my real list would turn this into a book, instead of a blog)
-I'm STILL here!!!!!!
-I get to impart wisdom and speak into my children's lives on my 'good' days.
-I've been able to get back into the game, mentally, over the last 6 months as my body has gotten somewhat stronger, and I've been able to get my head off the pillow.
-the new friends I've made from far away, and the 'old' friends that have stuck by us.
-the days I get to be up and about more than a few minutes!
-I got to go to Target this month after many months of not leaving my 'prison'.
-for my new wheelchair that allows me to sit up.
-watching my children grow more resilient each and every month.
-for my darling, precious husband who has become stronger than he every knew was possible.
-for the in-laws who moved here and have taken the children to all their events so they can have a more normal life again.
-for all the notes, gifts, cards, messages, and care packages that have come my way to lift my spirits.
-for the special friendship with my mother that has grown even deeper in the last 2 years.
-the days I can sit up and feel apart of 'it all'.
-the quiet moments when I'm all alone with just my thoughts to focus on what I want to be one day..when I grow up.
-for all the prayers and support of many----probably more than I even realize!
-for the gorgeous view out of my bedroom window as each season changes.
-for my pacemaker that has saved my life more than once.
-for the jolly Christmas carols that bring a silly smile to my face each time I hear them.
-for the joy that God gives me ...that is truly my strength.
-reconnecting with a dear friend I hadn't seen in many, many years.
-the little, tiny small things that remind me that being a mother is the best job in the world!
-access to email, texts, and the gift of electronic communication on the days I cannot talk.
-cookies...yummy cookies...on a bad day!
-for the days my children surprise me when they show compassion and empathy beyond their years.
-encouragement that seems to come-just in time!
-for the sweet lady who comes all the way to my house to do my hair, so that I can keep some femininity in the face of illness.
-Christmas decorations and the ambiance of the evening lights.
-for my partner in life....who has made me more grateful for him each and every day!
-and...........so so so so much more!!!!!!!!!!!!
Count your blessings....ONE BY ONE!!!!!!!!!!!!!!!!! Happy Thanksgiving!
Thursday, November 21, 2013
Quick update!
Just a really quick post for an update.....
David and I are still trying to make our final decisions on the big treatment option. My surgery is tentatively scheduled for Dec. 10th to have the port placed.
Our indecision comes after 2 weeks of having some easier days and longer "stand" times. Choosing a last resort option is more straight forward when you are feeling awful day in and day out and are unable to even get your own glass of water. In the last few weeks, I've had some pain relief and even been able to get on the floor for some projects. (I haven't been on the floor for about a year) While the discomfort isn't gone completely, by any means, it has eased up in general and my vital signs have tapered off somewhat. My breathing is the biggest transformation which as allowed me to talk and even walk around the house more than normal.
This has only added to my apprehension for making a 'last ditch effort' treatment decision that bears great risks and much uncertainty. However, we are spending more time trying to focus on the upcoming holidays and preparations. I believe I will hold off on doing the trial portion till after the new year. I spent a lot of the holidays last year in the hospital, and I'm not inclined to make that a new tradition.
On a happier note, I was able to complete several Christmas projects...which have brought me quite a bit of joy the past few weeks!
David and I are still trying to make our final decisions on the big treatment option. My surgery is tentatively scheduled for Dec. 10th to have the port placed.
Our indecision comes after 2 weeks of having some easier days and longer "stand" times. Choosing a last resort option is more straight forward when you are feeling awful day in and day out and are unable to even get your own glass of water. In the last few weeks, I've had some pain relief and even been able to get on the floor for some projects. (I haven't been on the floor for about a year) While the discomfort isn't gone completely, by any means, it has eased up in general and my vital signs have tapered off somewhat. My breathing is the biggest transformation which as allowed me to talk and even walk around the house more than normal.
This has only added to my apprehension for making a 'last ditch effort' treatment decision that bears great risks and much uncertainty. However, we are spending more time trying to focus on the upcoming holidays and preparations. I believe I will hold off on doing the trial portion till after the new year. I spent a lot of the holidays last year in the hospital, and I'm not inclined to make that a new tradition.
On a happier note, I was able to complete several Christmas projects...which have brought me quite a bit of joy the past few weeks!
Wednesday, November 20, 2013
Part 3: What's it really like to be severely ill? GUILT
Part 3 in the series I've been writing about the REAL side of chronic illness. It's getting down and dirty, vulnerable, and shows a more realistic-human side of being a young woman whose life was turned upside down by disease.
GUILT:
I would imagine that depending on the role one plays in the family, GUILT will come in many different forms. As the mother, the heart of the family, and the glue that held us together, guilt has been a very active component of my chronic illness. While I became sick without any fault of my own, it hasn't lessened my feelings of responsibility for the trauma it has caused my loved ones. After all, a mother's job is to protect her children and her family from as much harm and pain as maternally possible.
Nothing can tug at a mother's heart strings like watching your child hurt and knowing there is nothing you can do to ease that pain. To add insult to injury, 'YOU' are the reason the child is hurting! I have cried many a night at having to watch my children hurt, be afraid, or lead a different lifestyle because of my illness. In the beginning, it was much more difficult because it was all so new. The missed sporting events, school plays, special moments, birthday parties, family outings, doctor appointments, or daily carpools were all equally life altering for each of us. With time, the children became more acclimated to my absence, but their sweet attitudes still didn't make it less burdensome to me! I remember telling my doctor that I didn't care if I ever walked in public again, I just want to be able to drive my child to their daily commitments so that they didn't have to continue being 'abnormal'. No one placed this pressure upon me...it was given to me by my natural drive and longing to meet my family's needs. It has been, for me, one of the more challenging aspects of having a serious, chronic illness.
Going from being your spouse's other half to suddenly being their new caregiver would make anyone wince! Watching my precious husband go from being a husband and father to now being both father and mother, from husband to nurse, from cared for to caregiver has been gut wrenching. While it's all beyond my control, it doesn't hurt any less. I have to watch as his 'plans' and needs are put on the back burner. I have to watch as all the dreams, goals, and plans that we made go unfinished and most of them shelved permanently. We both had envisioned what our future would look like, and now our visions are nothing but a puff of smoke in the past. While I know deep down my husband would never want me to shoulder this guilt, it's still a very big part of my world. After all, it is MY disease that has changed our future, his world, our plans, and our family. Even the smallest things can bring on this intense sense of guilt. I know how much David hates to go to functions, church, or kids' events without his wife. I sigh a little each and every time!
Putting the role of wife and mother aside, I also had many other roles in life that I've had to curtail. The guilt of being a 'bad friend', an uninvolved parent in extra-curricular activities, the absent volunteer, the no longer go-to-gal, the always exhausted daughter-sister-aunt, and all my other roles in society that are riddled with deficiency. Despite the understanding of many, my feeling of culpability resounds each and every time I'm forced to admit I can no longer meet the expectations. I'm positive the feeling of guilt is often self-induced! It may have to do with my own desires and needs to meet other's necessities or possibly expectations. By nature, I am a 'Martha' (in both the Biblical sense, and the 'Martha Stewart' connotation). Removing me from all roles of care-giving has only made the guilt increase in intensity. After all, I was programmed to care for my family, and I loved every moment of it.
There is also a sense of guilt every time the medical bills come in the mail. If you have known anyone who was very sick for a long period of time, you know that financially, it can be an immeasurable burden on the family. As a sick mother, everything I used to contribute to the family has to be contracted out. The cooking, the cleaning, the driving, the planning, the decorating, the shopping: all things that we have to pay to have done for us. This section alone could illicit a whole new chapter. It's a tricky and intricate subject that I may tap into some other time.
How have I learned to deal with this extremely predominant emotion? Honest answer, I haven't been able to get this one under wraps, as neat and tidy as I have with other emotions. My counselor has been helping me talk through this one, somewhat. However, I feel that as long as I am a mother of young children and a wife of a man that I adore and long to care for, I will have this intense guilt that it was my body who failed our family. I could pretend that I understand there is nothing I could do to fix the problem, and I must yield to the knowledge that it is all beyond my control. But when the lights go out at night, I know that it is me-Melanie, that is sick and has changed everyone's world! I've worked very hard lately on not letting guilt be my guide. I'm learning that 'trying' to do things I cannot do, usually only makes me feel worse in the long run and makes everyone else's job much more difficult. Recently, I wanted to do something myself, so I didn't have to ask anyone to do it for me. It ended with my children having to care for me while I lay unconscious on the kitchen floor. The guilt got in the way! It also can produce more stress on me and on those around me. As I try to work through this in a healthy way, I realize it's all par for the course. I will not eliminate guilt from my repertoire of emotions, but I can, at least, begin to lessen it's repercussions by continuing to realize that I am much more than just my limitations. My thoughts often need to be redirected to what I am able to do, and how I can still minister to my family...even when I fall short of life's expectations. It will continue to be an evolving evolution!
GUILT:
I would imagine that depending on the role one plays in the family, GUILT will come in many different forms. As the mother, the heart of the family, and the glue that held us together, guilt has been a very active component of my chronic illness. While I became sick without any fault of my own, it hasn't lessened my feelings of responsibility for the trauma it has caused my loved ones. After all, a mother's job is to protect her children and her family from as much harm and pain as maternally possible.
Nothing can tug at a mother's heart strings like watching your child hurt and knowing there is nothing you can do to ease that pain. To add insult to injury, 'YOU' are the reason the child is hurting! I have cried many a night at having to watch my children hurt, be afraid, or lead a different lifestyle because of my illness. In the beginning, it was much more difficult because it was all so new. The missed sporting events, school plays, special moments, birthday parties, family outings, doctor appointments, or daily carpools were all equally life altering for each of us. With time, the children became more acclimated to my absence, but their sweet attitudes still didn't make it less burdensome to me! I remember telling my doctor that I didn't care if I ever walked in public again, I just want to be able to drive my child to their daily commitments so that they didn't have to continue being 'abnormal'. No one placed this pressure upon me...it was given to me by my natural drive and longing to meet my family's needs. It has been, for me, one of the more challenging aspects of having a serious, chronic illness.
Going from being your spouse's other half to suddenly being their new caregiver would make anyone wince! Watching my precious husband go from being a husband and father to now being both father and mother, from husband to nurse, from cared for to caregiver has been gut wrenching. While it's all beyond my control, it doesn't hurt any less. I have to watch as his 'plans' and needs are put on the back burner. I have to watch as all the dreams, goals, and plans that we made go unfinished and most of them shelved permanently. We both had envisioned what our future would look like, and now our visions are nothing but a puff of smoke in the past. While I know deep down my husband would never want me to shoulder this guilt, it's still a very big part of my world. After all, it is MY disease that has changed our future, his world, our plans, and our family. Even the smallest things can bring on this intense sense of guilt. I know how much David hates to go to functions, church, or kids' events without his wife. I sigh a little each and every time!
Putting the role of wife and mother aside, I also had many other roles in life that I've had to curtail. The guilt of being a 'bad friend', an uninvolved parent in extra-curricular activities, the absent volunteer, the no longer go-to-gal, the always exhausted daughter-sister-aunt, and all my other roles in society that are riddled with deficiency. Despite the understanding of many, my feeling of culpability resounds each and every time I'm forced to admit I can no longer meet the expectations. I'm positive the feeling of guilt is often self-induced! It may have to do with my own desires and needs to meet other's necessities or possibly expectations. By nature, I am a 'Martha' (in both the Biblical sense, and the 'Martha Stewart' connotation). Removing me from all roles of care-giving has only made the guilt increase in intensity. After all, I was programmed to care for my family, and I loved every moment of it.
There is also a sense of guilt every time the medical bills come in the mail. If you have known anyone who was very sick for a long period of time, you know that financially, it can be an immeasurable burden on the family. As a sick mother, everything I used to contribute to the family has to be contracted out. The cooking, the cleaning, the driving, the planning, the decorating, the shopping: all things that we have to pay to have done for us. This section alone could illicit a whole new chapter. It's a tricky and intricate subject that I may tap into some other time.
How have I learned to deal with this extremely predominant emotion? Honest answer, I haven't been able to get this one under wraps, as neat and tidy as I have with other emotions. My counselor has been helping me talk through this one, somewhat. However, I feel that as long as I am a mother of young children and a wife of a man that I adore and long to care for, I will have this intense guilt that it was my body who failed our family. I could pretend that I understand there is nothing I could do to fix the problem, and I must yield to the knowledge that it is all beyond my control. But when the lights go out at night, I know that it is me-Melanie, that is sick and has changed everyone's world! I've worked very hard lately on not letting guilt be my guide. I'm learning that 'trying' to do things I cannot do, usually only makes me feel worse in the long run and makes everyone else's job much more difficult. Recently, I wanted to do something myself, so I didn't have to ask anyone to do it for me. It ended with my children having to care for me while I lay unconscious on the kitchen floor. The guilt got in the way! It also can produce more stress on me and on those around me. As I try to work through this in a healthy way, I realize it's all par for the course. I will not eliminate guilt from my repertoire of emotions, but I can, at least, begin to lessen it's repercussions by continuing to realize that I am much more than just my limitations. My thoughts often need to be redirected to what I am able to do, and how I can still minister to my family...even when I fall short of life's expectations. It will continue to be an evolving evolution!
Monday, November 18, 2013
OUR FAVORITE love story of all times! Written by both David and Melanie
In the next few weeks, I hope to finish and post an article written by my immediate family: "A Family's Perspective of Chronic illness".
However, before I post information about our present, I wanted to give a little background of our 'past'. Those who know us, may already know this story, but since it's my favorite LOVE STORY OF ALL TIMES, I always enjoy retelling it!
I asked David, my darling husband of over 15.5 years, to also write his version of 'our love story'. After reading it, I laughed out loud several times at all the similarities! You will read his excerpt and see what I mean. This article leads up to the piece we are working on as a family...a very, very hard one to write, I might add, about how illness has changed our family!
MELANIE'S ACCOUNT:
Once upon a time, on a chilly January evening, David and Melanie met for the first time! I remember many details about that evening, and had no idea how that one night would change my entire life!
My older brother gave me a phone call asking me to come over to his home one night because he had something he wanted to talk about with me. I remember it seeming quite strange, but decked out in my sweatpants, I jumped in my car and headed right over to his place. Not long after I had arrived, there was a knock at the door! David, a friend of my brothers, came inside and introduced himself. I distinctly remember noticing he was tall, blonde, and had piercing blue eyes! Just seconds later, my brother got a phone called and disappeared into another room. Coincidence? I don't think so!!!!!! It would be months before I knew this was no chance meeting! Who knew my big brother was cupid's assistant!
I was not looking for a relationship at this time, as I had just ended one 2.5 months before I met David. Clad in my sweatpants, David and I were forced to make idle chit-chat while my brother took his LONG ONE-HOUR phone call. As David began to talk about his future plans and ambitions, it was very obvious to me that he was kind, gentle, intelligent, and very goal-oriented. I was immediately impressed at how self driven he was! Purpose and direction in life had been something I had seen very little of in most men, and it was quite refreshing to see and hear him talk about his life goals. I was a little taken back when he told me (on our first meeting, mind you) that he was looking for a Christian wife, wanted a big family, and was going to choose his medical specialty based on lifestyle and not money. That immediately made me wonder: "Is this guy really for real?".
That night, I sat on the side of my mother's bed, as I did most evenings during my 4 month hiatus from Mexico. I told her about this guy...who was most likely too good to be true! I had been fooled before, and my guard would be much higher this time! I'm sure we laughed and chatted...even though I usually did all the talking, my mother faithfully stayed up each night and let her girl share her heart-which I often did quite freely!
Over the next few weeks, I would encounter David at church, with the single's group, and at some sporting events. Each and every time I spoke with him, I became more and more impressed. I was not easily won over, but cautiously optimistic as it became clearer and clearer that his man was different. We began to forge a friendship. I genuinely began to like this person and enjoyed our conversations. We ended up going on our first date....there is a funny story to go along with that, but I'll save for another time. It did have something to do with him eating my left overs and showing me pictures of his family's cross country explorations. He didn't get a whole lot of points that night, but the innocent, unassuming attitude was well noted!
It was time for me to return to Mexico and finish out the spring teaching and working. The doors had begun closing for new areas to serve, my body was tired and getting sick more easily, and my opportunities to actually minister beyond teaching had begun to diminish. I made the difficult choice to end my work in Mexico for a period of time to recoup, regroup, and reevaluate. When making the decision, I had only intended to leave for a year hiatus, but little did I know, it would be permanent. David and I communicated via letters during the few months I was gone. Our friendship continued to grow as I began to embark on new horizons in my life, and as he continued to work very hard in the demands of medical school.
In June of 1997, I returned home for good after almost 4 years of living, working, ministering, and thriving in Mexico as a missionary. David and I began to date exclusively over the summer of that year just one year shy of him graduating from medical school. Honestly, I was intrigued by David more than attracted to him. (He always hates that part of this story) However, it is such an intricate part of our success. It was my respect and admiration that had me knocked off my feet long before it was mushy, often-blind infatuation. However, while our friendship itself flourished, it would be 11 months after we first met, until I would fall head over heels in love and know that this person was made JUST FOR ME!
After learning from my own mistakes, I had hand written pages and pages of things that I wanted to find in a soul-mate. The purpose of putting these on paper was so that the 'BLIND LOVE' couldn't or wouldn't get in my way when making a sound decision. I didn't want to lower my standards, dreams, or criteria based on a passing emotion. When I say I had hundreds of things listed, my mother can vouch for that! (none of these were physical or superficial because I knew that didn't matter in the grand scheme of things) In Dec of 1997, I sat on my bed with my long, long list! I began checking off each and every item. After going through the list, there was ONLY ONE item left unchecked. David had all the character, the honesty, the integrity, the ambition, the security, and the heart that I had looked for in a future husband. He didn't try to change me, he accepted me for me, and I got to be myself with him. More importantly, he treated me like a princess on a petal stool. There is a lot more to that part of the story, but this is a blog, NOT a book!
David and I were married June 6th of 1998 in a 'cinderella,' evening wedding! The wedding was so much more than me getting a new last name or an exchange of rings...it was the day I got to go home with my best friend! We both remember how easy it was for us! We had talked long before we were engaged about what we expected, wanted, and anticipated out of marriage. We even sat down with a pad and paper to write down what we both expected out of life and marriage. The 'kinks' had been worked out long before there was a ring. We would later find that it was this friendship, planning, and calculated intent that kept this marriage solid and afloat amidst all the storms that would surly follow.
In a few short years of marriage, David and I had moved multiple times around the country, had 2 beautiful baby boys, gone through internships, residencies, and more life changing events than we felt were our fair share! We ended up in the midwest after 5 long years of residency. Our youngest daughter was born, David's new job had begun, and we were a typical busy family!
We had, had our share of trials, minor illness, and all the fun that comes with running a large family. We lived very far away from all family and often found being all alone was quite difficult at times. However, the bond that David and I shared was always enough to carry us through. We would rather spend time with each other than with anyone else in the world. We love the song that says: "No one will ever know what was said between your heart and mine". That sums up our marriage! We didn't just survive life, we thrived!
For those who knew David and I (pre-illness), you knew we shared a love...one for the ages! We were 2 peas in a pod. Our idea of a good day, was one spent together. Our biggest marriage complaints: wish we could spend more time together instead of being busy with life. However, post-illness, hasn't changed that much. While we are a different family than before, it was that love...that kind of love that you read about, dream about...that happens only once in a lifetime....that gets us through each and every day. I'm not entirely sure that anything less would have survived what we've been through in the last 2.5 years.
I not only love this man that I share my life with, I like him! I respect him as a man full of character and integrity. My children get to watch each and everyday as he treats me like a princess. I've come across a lot of men and marriages, and rarely see the unselfishness that I watch in David. He holds some very valuable keys! He learned early on that watering and tending to his 'flower' only produced beauty, and in turn, yielded a rich and fertile garden. He's very careful not to throw stones on that soil, and I feel like the luckiest girl in all the world! Gosh, I really believe this is what marriage was really meant to look like! I'm positive this is what was meant when God said "Men, loves your wives as Christ loved the church'. Even if you take out the spiritual element, the principal still rings so true! Men often don't know they are holding the keys to happiness in their marriage. (not in a sexist way, of course, but I'm pretty sure that's why men and women were wired so differently in what speaks to our hearts)
I wanted to spend a few moments to share MY FAVORITE LOVE STORY OF ALL TIMES with you before I begin to explain how severe illness changed our lives and family. It's really hard to share that part of the story without going back and seeing the beginning! No matter what cards I got dealt, I know I still got the best deal of all! I got DAVID!
DAVID'S ACCOUNT:
However, before I post information about our present, I wanted to give a little background of our 'past'. Those who know us, may already know this story, but since it's my favorite LOVE STORY OF ALL TIMES, I always enjoy retelling it!
I asked David, my darling husband of over 15.5 years, to also write his version of 'our love story'. After reading it, I laughed out loud several times at all the similarities! You will read his excerpt and see what I mean. This article leads up to the piece we are working on as a family...a very, very hard one to write, I might add, about how illness has changed our family!
MY FAVORITE LOVE STORY OF ALL TIMES!
MELANIE'S ACCOUNT:
Once upon a time, on a chilly January evening, David and Melanie met for the first time! I remember many details about that evening, and had no idea how that one night would change my entire life!
My older brother gave me a phone call asking me to come over to his home one night because he had something he wanted to talk about with me. I remember it seeming quite strange, but decked out in my sweatpants, I jumped in my car and headed right over to his place. Not long after I had arrived, there was a knock at the door! David, a friend of my brothers, came inside and introduced himself. I distinctly remember noticing he was tall, blonde, and had piercing blue eyes! Just seconds later, my brother got a phone called and disappeared into another room. Coincidence? I don't think so!!!!!! It would be months before I knew this was no chance meeting! Who knew my big brother was cupid's assistant!
I was not looking for a relationship at this time, as I had just ended one 2.5 months before I met David. Clad in my sweatpants, David and I were forced to make idle chit-chat while my brother took his LONG ONE-HOUR phone call. As David began to talk about his future plans and ambitions, it was very obvious to me that he was kind, gentle, intelligent, and very goal-oriented. I was immediately impressed at how self driven he was! Purpose and direction in life had been something I had seen very little of in most men, and it was quite refreshing to see and hear him talk about his life goals. I was a little taken back when he told me (on our first meeting, mind you) that he was looking for a Christian wife, wanted a big family, and was going to choose his medical specialty based on lifestyle and not money. That immediately made me wonder: "Is this guy really for real?".
That night, I sat on the side of my mother's bed, as I did most evenings during my 4 month hiatus from Mexico. I told her about this guy...who was most likely too good to be true! I had been fooled before, and my guard would be much higher this time! I'm sure we laughed and chatted...even though I usually did all the talking, my mother faithfully stayed up each night and let her girl share her heart-which I often did quite freely!
Over the next few weeks, I would encounter David at church, with the single's group, and at some sporting events. Each and every time I spoke with him, I became more and more impressed. I was not easily won over, but cautiously optimistic as it became clearer and clearer that his man was different. We began to forge a friendship. I genuinely began to like this person and enjoyed our conversations. We ended up going on our first date....there is a funny story to go along with that, but I'll save for another time. It did have something to do with him eating my left overs and showing me pictures of his family's cross country explorations. He didn't get a whole lot of points that night, but the innocent, unassuming attitude was well noted!
It was time for me to return to Mexico and finish out the spring teaching and working. The doors had begun closing for new areas to serve, my body was tired and getting sick more easily, and my opportunities to actually minister beyond teaching had begun to diminish. I made the difficult choice to end my work in Mexico for a period of time to recoup, regroup, and reevaluate. When making the decision, I had only intended to leave for a year hiatus, but little did I know, it would be permanent. David and I communicated via letters during the few months I was gone. Our friendship continued to grow as I began to embark on new horizons in my life, and as he continued to work very hard in the demands of medical school.
In June of 1997, I returned home for good after almost 4 years of living, working, ministering, and thriving in Mexico as a missionary. David and I began to date exclusively over the summer of that year just one year shy of him graduating from medical school. Honestly, I was intrigued by David more than attracted to him. (He always hates that part of this story) However, it is such an intricate part of our success. It was my respect and admiration that had me knocked off my feet long before it was mushy, often-blind infatuation. However, while our friendship itself flourished, it would be 11 months after we first met, until I would fall head over heels in love and know that this person was made JUST FOR ME!
After learning from my own mistakes, I had hand written pages and pages of things that I wanted to find in a soul-mate. The purpose of putting these on paper was so that the 'BLIND LOVE' couldn't or wouldn't get in my way when making a sound decision. I didn't want to lower my standards, dreams, or criteria based on a passing emotion. When I say I had hundreds of things listed, my mother can vouch for that! (none of these were physical or superficial because I knew that didn't matter in the grand scheme of things) In Dec of 1997, I sat on my bed with my long, long list! I began checking off each and every item. After going through the list, there was ONLY ONE item left unchecked. David had all the character, the honesty, the integrity, the ambition, the security, and the heart that I had looked for in a future husband. He didn't try to change me, he accepted me for me, and I got to be myself with him. More importantly, he treated me like a princess on a petal stool. There is a lot more to that part of the story, but this is a blog, NOT a book!
David and I were married June 6th of 1998 in a 'cinderella,' evening wedding! The wedding was so much more than me getting a new last name or an exchange of rings...it was the day I got to go home with my best friend! We both remember how easy it was for us! We had talked long before we were engaged about what we expected, wanted, and anticipated out of marriage. We even sat down with a pad and paper to write down what we both expected out of life and marriage. The 'kinks' had been worked out long before there was a ring. We would later find that it was this friendship, planning, and calculated intent that kept this marriage solid and afloat amidst all the storms that would surly follow.
In a few short years of marriage, David and I had moved multiple times around the country, had 2 beautiful baby boys, gone through internships, residencies, and more life changing events than we felt were our fair share! We ended up in the midwest after 5 long years of residency. Our youngest daughter was born, David's new job had begun, and we were a typical busy family!
We had, had our share of trials, minor illness, and all the fun that comes with running a large family. We lived very far away from all family and often found being all alone was quite difficult at times. However, the bond that David and I shared was always enough to carry us through. We would rather spend time with each other than with anyone else in the world. We love the song that says: "No one will ever know what was said between your heart and mine". That sums up our marriage! We didn't just survive life, we thrived!
For those who knew David and I (pre-illness), you knew we shared a love...one for the ages! We were 2 peas in a pod. Our idea of a good day, was one spent together. Our biggest marriage complaints: wish we could spend more time together instead of being busy with life. However, post-illness, hasn't changed that much. While we are a different family than before, it was that love...that kind of love that you read about, dream about...that happens only once in a lifetime....that gets us through each and every day. I'm not entirely sure that anything less would have survived what we've been through in the last 2.5 years.
I not only love this man that I share my life with, I like him! I respect him as a man full of character and integrity. My children get to watch each and everyday as he treats me like a princess. I've come across a lot of men and marriages, and rarely see the unselfishness that I watch in David. He holds some very valuable keys! He learned early on that watering and tending to his 'flower' only produced beauty, and in turn, yielded a rich and fertile garden. He's very careful not to throw stones on that soil, and I feel like the luckiest girl in all the world! Gosh, I really believe this is what marriage was really meant to look like! I'm positive this is what was meant when God said "Men, loves your wives as Christ loved the church'. Even if you take out the spiritual element, the principal still rings so true! Men often don't know they are holding the keys to happiness in their marriage. (not in a sexist way, of course, but I'm pretty sure that's why men and women were wired so differently in what speaks to our hearts)
I wanted to spend a few moments to share MY FAVORITE LOVE STORY OF ALL TIMES with you before I begin to explain how severe illness changed our lives and family. It's really hard to share that part of the story without going back and seeing the beginning! No matter what cards I got dealt, I know I still got the best deal of all! I got DAVID!
DAVID'S ACCOUNT:
It was early January 1997, when I met the girl of my dreams, although I did not yet know it at the time. My good friend had a sister whom I had seen once from afar and thought she was quite attractive. I knew I would have to come up with a plan to get to know her. I showed up at my friend's house and got to meet her and had a long conversation with Melanie while her brother took a phone call. It was there that we made our first acquaintance. I tried to put my best foot forward, albeit unconventionally. We then saw each other at a single's ski trip and hit it off. We had our first date the day after Valentine’s day, and then she returned back to Mexico for a season. We dated after her return, and I knew this girl was different. She was not only a good conversationalist, smart, witty, and funny, but someone who had a genuine heart for others. Melanie was unquestionably a dedicated Christian. Those attributes I first noticed were only the tip of the iceberg!
Our relationship at first was more of a friendship than anything else, but eventually grew into a great love, romance, and marriage. I knew she would be my soulmate, my partner in life, a great future mom, and one who I would trust my children with if anything would ever happen to me. We had a storybook wedding and the ‘perfect’ marriage. We were two peas in a pod. We rarely argued, complimented each other well, and had the ‘perfect’ life. We were busy, traveled, worked hard, and played hard. We had three lovely children, our dream home, my dream job, and everything was as we had planned and then some. We had some ups and downs like everyone I’m sure, but our strong love, devotion, and commitment to one another was stronger than anything that could come our way. That strong foundation has likely been the glue that has held us together in this unrelenting hurricane of life that never seems to end for Melanie. (Part I)
Friday, November 15, 2013
DANCING IN THE RAIN!
I recently bought a plaque with this saying to proudly display next to my bed! When I start to feel a little down, I read it aloud, and remind myself..don't just SURVIVE, Melanie, THRIVE!
Sunday, November 10, 2013
What a fun surprise!!!!!!!! No pain...no gain!
Every 6-9 months, I'm blessed with a fun surprise!!!! Doctors are not sure the whys or the hows...but something inside me just gets turned OFF for a short spell. No, I cannot run the hallways because my vasoconstrictors are permanently damaged and unable to be magically fixed to allow me to walk much...but the swinging pendulum of heart, blood pressure, breathing, gastro, and temperature fluctuations suddenly level off for a few days to a week or two.
Putting it into basic translation: the immense pain, discomfort, and dangerous swings of my blood pressure and heart rates all settle down for a short spell. When you are in pain or discomfort 24-7, nothing is more exciting, relieving, and comforting than a BREAK from that existence. I have no clue how long it may last...it's been anywhere from 3 days to 2 weeks....and it will disappear as suddenly as it arrived. However, I will be relishing in it and wearing out my poor weak body every second of every day until it's over. Heck, last December I was given 7 long days of being PAIN-FREE...and I organized a winter garage sale and we pulled it off. (no one complained, cause Momma racked in $1700 for Christmas)
While I cannot walk much or sit long, I do have tons of energy....have a clear mind....and am even able to leave the house. My husband was such a great sport yesterday as he pushed me around town in my reclining wheel chair as I shopped for Christmas crafts and decor. Yep...I'm planning on using my few days this time to do some fun Christmas decorating....(from the bed, of course). I threw in some laundry, made my daughter's breakfast, and most importantly LEFT THE CONFINES of my daily four-walled prison. It was a good, good day!
I went to bed last night with quite a few aches and pains and was so exhausted I could barley speak......but it was the GOOD kind of hurt!!!! It was the kind that I HAD CHOSEN, I HAD PRODUCED, AND I HAD WANTED! For once to twice a year, I get to wear out my own body...on MY terms! Gosh, sitting in that wheel chair wore me out, but it felt so good! Somethings in life are so worth the extra pain! I imagine that in everyone's life......bringing on the pain can be so rewarding and so worth it either physically, emotionally, spiritually, or mentally.
Will you be choosing to produce a little pain this week to get an END RESULT WORTH every second?
Putting it into basic translation: the immense pain, discomfort, and dangerous swings of my blood pressure and heart rates all settle down for a short spell. When you are in pain or discomfort 24-7, nothing is more exciting, relieving, and comforting than a BREAK from that existence. I have no clue how long it may last...it's been anywhere from 3 days to 2 weeks....and it will disappear as suddenly as it arrived. However, I will be relishing in it and wearing out my poor weak body every second of every day until it's over. Heck, last December I was given 7 long days of being PAIN-FREE...and I organized a winter garage sale and we pulled it off. (no one complained, cause Momma racked in $1700 for Christmas)
While I cannot walk much or sit long, I do have tons of energy....have a clear mind....and am even able to leave the house. My husband was such a great sport yesterday as he pushed me around town in my reclining wheel chair as I shopped for Christmas crafts and decor. Yep...I'm planning on using my few days this time to do some fun Christmas decorating....(from the bed, of course). I threw in some laundry, made my daughter's breakfast, and most importantly LEFT THE CONFINES of my daily four-walled prison. It was a good, good day!
I went to bed last night with quite a few aches and pains and was so exhausted I could barley speak......but it was the GOOD kind of hurt!!!! It was the kind that I HAD CHOSEN, I HAD PRODUCED, AND I HAD WANTED! For once to twice a year, I get to wear out my own body...on MY terms! Gosh, sitting in that wheel chair wore me out, but it felt so good! Somethings in life are so worth the extra pain! I imagine that in everyone's life......bringing on the pain can be so rewarding and so worth it either physically, emotionally, spiritually, or mentally.
Will you be choosing to produce a little pain this week to get an END RESULT WORTH every second?
Friday, November 8, 2013
A grateful person is RICH in contentment!
I'm sure we all know a few people in our lives who are never happy with what they have, you can never do enough for them, or they are insistently complaining about the most trivial things. Those people are pretty easy to spot...and we can say with much clarity....they are probably not riddled with gratefulness. However, without a life shattering tragedy, can we learn to become grateful and show it off by our contentment with the 'little things'. I absolutely LOVE to see gratefulness oozing from someone who has decided to BE HAPPY despite the things or people around them. You can't really fake this....I think....either you constantly feel disappointed by your life or the people around you, or you've chosen to see the beauty in your life, your family, your spouse, or even in your circumstance.
How am I trying to choose to be grateful today? I often talk about my silver linings. I have to look very hard each and every day to find one, but I can ALWAYS find one....if I choose to look for it. I believe that my silver linings are things I can be grateful for, and in turn, I'm producing gratefulness!
Instead of focusing on all the things that I have a 'right' to be ungrateful for, I'm going to put my entitled attitude aside and choose to find gratefulness TODAY! I could justify why I have a right to complain, why I could be ungrateful about my life, or how things or people have disappointed me...but in the long run, I'm only robbing myself of the chance to find contentment. I'm not overflowing with excitement that I'm living a ridiculously difficult life...that would be denial. But I am going to be happy with what I do have and can do, and those things remain precious to me!
My gratefulness this week:
-After almost 6 weeks of difficulty breathing and talking, I was able to read a few pages of a book to my daughter every morning this week. (this brought me JOY)
-My oldest son actually volunteered and wanted to help me with a Christmas craft and provided some great assistance...even from the bed!
-Despite the loss in appetite again, I did get to lose 4 lbs. (that's huge for someone who has been in the bed for a year)
-The sounds of Christmas carols brought a smile to my face this week.
-I received several cards, recently, from people I've never even met. God sent me multiple messages of love using sweet, willing women from other states.
-My hubby agreed to put up the Christmas tree EARLY!
-I was able to talk with my mother on the phone without as much difficulty of breathing.
-My blood levels are back up to the numbers we need them to be to allow me to not feel as out of it, dizzy, sick, nauseous, and short of breath as I usually am.
-Learned that I can wrap presents pretty darn quickly! I can average 3-5 gifts in my 2 minute stand time this week!
-I've gotten to have some great bonding time with my children that I cannot do on my really bad weeks!
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How are you going to choose to be grateful this week? Will we see your true contentment?
Thursday, November 7, 2013
Don't say this...say that! Top 15 funniest, strangest, and worst things to say to someone who is severely ill!
There is no 'go-to manual' on how to be a friend to someone who is sick, and I hope this provides some insight into this mostly unexplored territory. For many people, having a sick friend is something new and unexpected, awkward at times, and filled with rocky terrain of questionable "do's or don'ts."
I write this article from a mostly, comical point of view...yet hopefully also informative. I found along the way that there are some wonderfully, comforting words and gestures that can help tremendously in the face of desperation. I've also found, in reading books and on the internet, that there are a few 'never say' phrases that are cringe worthy to the chronically ill. Your encounter alone could be the patients' "make or break" for that day!
1) You don't look sick......you look great....or you look terrible:
While none of those comments are probably ever meant in a negative way, they can easily become a hot button issue on any given day. First, someone who has literally just been to hell and back doesn't want to hear that you are unable to 'understand' their pain because you cannot see the soul ripping effects of their illness. What's happening inside the body doesn't often manifest outwardly, and pointing out the lack of evidence of illness can seem to minimize what someone is or has gone through. In the same tune, telling a person how awful they look can only remind them that their disease is getting the best of them. If they are like me, vanity doesn't die hard.
What you can say: Try to avoid comments on appearance. We already know the good, the bad, and the ugly. If you must, try something that no disease can rob them of for example: 'I can still see that twinkle in your eye that I've always loved about you'
2) You're lucky:
Yes, I actually have had a few people say this to me! One person even needed to elaborate on how they would give anything in the world to be able to lie around all day in bed and watch tv. Another Einstein told me how great it must be to have someone wait on me hand and foot and do my housework. While I wanted to scream: "Are you freakin' kidding me?", I realized these poor dear ones had absolutely no concept of what I was actually going through. I could only say that I hope they never, ever get the chance to live our their fantasy in this a cruel way!
What you can say: Just don't go there! :)
3) Let me know if there is anything I can do to help:
I think everyone must get this memo as the perfect one liner to say to someone who is sick. We all know it's a cliche meant to appease a guilty conscious or appear to want to put forth an effort. If you really did want to help, you would find a way! If you are watching someone die or become very sick, you can easily see the plethora of needs. There are about 100 things you could always do to help if you really wanted to actually be a blessing. Don't offer unless you have a plan. Someone who is very sick doesn't want to be a burden, and this statement just "puts the burden back" on the patient.
On one occasion a lady came up to me and said: "I don't cook, I don't like to cook, and it's a blessing to you that I'm not cooking for you...but if there is ever anything else you might need, just let me know."......chuckle chuckle!
What you can say: I'd like to bring your family a meal, would Friday or Saturday work best? I'd love to take the kids off your hands for a bit, does Tuesday work? We're coming over to cut the grass for the family, do you prefer weekends or week days.
4) My thoughts and Prayers are with you.
Guilty! I'm guilty of this, too! However, lesson-learned! It's very sweet to think or pray for someone, but 99.9% of the time, this is another 'feel good comment'. I can say I've probably heard this about 4,592 this year alone. Ok, so maybe not that many, but probably pretty close. It's the 'go to' sick comment, and in the world of Facebook, I've found myself using it quite a bit. Let's keep it in Facebook world, and not in the real world!
What you can say: "You were on my mind all day today. I spent some time in prayer for you and your family this week. How can I pray for you?"
5) How are you?
In my personal situation, this will never have a good answer. I'm sick 24-7. I don't want my illness to define me, but this question pretty much can only sum up that I'm not well. Also, I feel it's asked out of obligation, like every conversation must somehow revolve around the fact that I am indeed sick. Also, how many people really want to know how you are doing....all the ends and outs.
What you can say: "How are you, today? or What were the bright spots of your day? or What exactly are you feeling"
6) I have this great herbal remedy that could cure your incurable disease! Have you tried the natural remedies I told you about yet? You should ditch your doctor and medicines for only all natural foods and vitamins.
While I read about this being a faux pa of things to say to terminally ill patients, I must say it's probably one of my least favorite things I hear. If only you knew to what lengths someone would go to find a cure for their disease. I'm positive the very sick have already researched everything there is out there on the market or popular old wives tales. Your 'extra secret mystery herbal remedy' is so secretive that even the best doctors and researchers in the world have not been informed about its magical powers....you better run right out and buy some stock for it asap. It's best to keep this type of unsolicited advice under wraps.
What you can say: The majority of very sick people are not asking lay people for their medical advice. Unless you are specifically asked or have had their exact illness, keep the potions in the cabinet.
7) Please tell me what the doctors say or your test results.
Not every patient is private. I am a big talker and don't mind sharing some information. However, let that be my choice of what, where, and when, and how I want to share it. After I got some very difficult news, I needed some time to process what I had just been told. For me, this took almost a month before I was ready to make it 'Facebook knowledge'. It needs to be on the patients terms. If we want you to know, we will tell you.
What you can say: Just don't ask. We will let you know when and if we are ready.
8) If you just had more faith (or other things), you would be healed.
As a person who believes in God, has faith, and is known to be a Christian, and a former missionary, I've found myself surrounded by the 'well-meaning,' Bible toting, scripture quoting, religious population. While I appreciate any and all prayers being lifted up for me and my family, the very last thing I need is to hear your personal opinions on MY God journey, my Christianity, or my lack of faith. We all have different views or different interpretations of the Bible. If for one second you could put yourself in my shoes, you would probably surmise the immense internal struggle for answers that exists day in and day out in my world. The 'WHY' can be so overwhelming at times. Bad things do happen to good people, and I must wrestle every day with the fact that I'm living a nightmare and how that may effect my own relationship with my God. All the unsolicited religious rebuking is being done by someone who hasn't walked even one step in the shoes that I've walked miles. This is one venue where I've had some really funny comments. Oh, the things people take the liberty to say in the name of God. One sweet lady even told me how disappointed she was in me that I didn't have enough faith to be healed. That doesn't HELP! I actually love knowing that I'm being prayed for and that there are Christians who will take time out of their busy lives and schedules to care enough about me and my family to ask my God to intervene. However, that's where the line has to be drawn. And please, never, ever say "God only gives us as much as we can handle"......
What you can say or do: Words, sayings, or phrases of encouragements, favorite scriptures that have helped you get over tough times, inspirational music-cds, a daily devotional book, silent prayers, joyful encouragement, or a 'you're not alone' card or note.
9) I miss the 'old' _____________
If you miss the old person or the good 'ole days, we are probably missing them 100 times more! We are aware of the loss in our lives and sometimes even more aware of how our illness has changed others' lives. The guilt that can go along with chronic illness can be daunting, to say the least! Reminding us that we were once a better friend, better family member, better person, better, better, better.....can easily add to the burden that we have already put upon ourselves. Try not to remind us that we've created a void in your life with statements such as these.
What you can say: Find something 'new' that the sick person has done or become that you like about them NOW! or Tell them how they may have spoken in your life one day that they were unaware.
10) Everything will be alright. You are not going to die. You will beat this. God will heal you.
Truth is, nobody knows! You don't know what God has planned for me or anyone. I don't know what the future holds. However, as part of my journey, acceptance is a very key role in being able to cope with a degenerative disease. Remember that acceptance doesn't mean giving up. Those that know me well, know that I'm fighting .....and fighting hard like in 'cue the music in the Rocky movie' kind of fighting. However, in this process, I've had to come to grips with the fact that I'm am sick, everything isn't alright, I will probably die long before I had planned, and this disease isn't curable. Does this mean I'm saying all hope of a chance of getting better is gone? Not at all! However, it would eat me alive if I got up every morning confused as to why I was still sick, if I hadn't allowed acceptance to come in as an important coping mechanism.
What you can say: "I'm in your corner, I'm rooting for you, I want to walk with you during this fight" or something like: "We don't know what the future holds, but I'm glad you're here now, and I thank God for every day He gives us".
11) I can relate.........or .......complaining about your minor medical issues.
Now, if I told you that someone once shared a story with me about a toe fungus and how they could relate to my disease, you'd probably think I was joking...I'm NOT! I've been told stories of the flu, aches and pains, minor illness, and even sleepless nights. I know it's important for people to try to learn how to relate to someone else's pain. I am not a sensitive person, so I totally get it.....and I understand it's our human attempt to try to have empathy. I know before I became sick, I probably couldn't even relate for a second to severe chronic illness. Unless we've walked in those shoes, we cannot relate! Also, if you are aware of the 'life' and burden this person must bear physically, probably hearing you complain about your 2-3 day flu isn't going to go over very well. I've likened my illness to someone having the worst flu of their life, chest pain, difficulty breathing, severe pain all over the body, and being on a twirly-wirly all the time. Except, while your flu goes away after a week, I never, ever have an end to my pain or "flu." While not everyone who is as sick as I am will feel the same, so I won't speak for them all...but for me, I find it very difficult to try to be empathetic to aches and pains at this point. Not being terribly empathetic about aches and pains, doesn't remove my ability to genuinely care for and about people.
What you can say: "I cannot imagine what you are going through."
12) When you get better, we will have to go do this or that
This comment would really only apply to the terminally ill or those with a degenerative illness. The reality of what the future doesn't hold is a hard pill to swallow. We've already played out the scenarios of what we will miss out in life, and don't need a constant reminder of the things we will never be able to do again or do in the first place. Of course, that's a great chance to make new memories of things we CAN still do! For me, I will never travel again, care for my family, or play tennis...but what CAN I still do...that's the key!
What you can say or do: Grab a bottle of wine and a great movies and plan a girl's night IN. Have a Christmas wrapping party. Make a chocolate tasting contest. Be creative. Make new memories...find the "can dos"!
13) Let me know when you are ready for me to leave!
Now, if your momma was anything like mine, she taught you some manners! And even amongst the sick, those manners are still very much in tack. One of the hardest things for someone who is sick to say is: "Please leave". It's an awkward situation and any sweet southern girl will find it difficult to say such things. It's best not to put the patient in that situation.
What you can say or do: Don't ever show up unannounced. If someone is severely ill, you never, ever know what's happening in that moment. Even the kindest of people would find it hard to turn away a visitor. Depending on the pain or the physical strain on the patient, most would recommend no more than a 15 minute visit. Someone once said: "I'll let you get some rest" after a quick visit...and it was music to my ears. As much as I loved seeing them, I was worn out and exhausted.
14) Focusing only on the illness.
For a few months, when things had gotten really scary for me and we weren't sure if my time was up, I realized that no one ever talked to me about anything else except for my illness. I had ultimately become defined by the one thing that had already robbed me of my life, now it had become my life. If people would call or text or visit...the one and only conversation was SICKNESS! But I was so much more than that! I still was a person...I still had dreams, desires, wisdom, stories, and a little bit of life left in me and I was forced into a box. I grew tired of talking about how I was feeling....how I was coping...how I was managing. I wanted to hear about the latest happenings in town, what new movies were coming out, or even a funny story or two.
What can you say: Follow MY lead! Somedays I need to talk about how I feel. Somedays I need you to know I'm hurting both physically and mentally. However, somedays, I just need to be ME...somedays I just need to talk about something else other than my illness!
15) I haven't been in touch because I wanted to give you your space.
There are lots of creative, thoughtful ways to let someone know you are thinking of them without getting in 'their space'. Unless we asked for this space, a friend would want to be there through thick and thin. If you don't know how to do that, take little baby steps. I've expressed before, even the smallest acts of love can go a long-long way. Don't be scared, you can't catch it!
What you can say or do: Most likely this is because YOU are uncomfortable. If that's the case, send little notes in the mail, bake a batch of cookies, or mail them your favorite 'go to' movie. It's really easy to keep in touch in small non-intrusive ways!
I write this article from a mostly, comical point of view...yet hopefully also informative. I found along the way that there are some wonderfully, comforting words and gestures that can help tremendously in the face of desperation. I've also found, in reading books and on the internet, that there are a few 'never say' phrases that are cringe worthy to the chronically ill. Your encounter alone could be the patients' "make or break" for that day!
I've had many people over the years ask how they could be a better friend to me in my new life, and what things I liked or did not like. There have been some comical moments, a few 'what were they thinking' moments, and some amazing blessings and small acts of kindness. I personally, have been beyond BLESSED by having some wonderful people who dared to go on this journey with me.... both of us not knowing the 'right way' all the time....but willing to take a shot at it!
1) You don't look sick......you look great....or you look terrible:
While none of those comments are probably ever meant in a negative way, they can easily become a hot button issue on any given day. First, someone who has literally just been to hell and back doesn't want to hear that you are unable to 'understand' their pain because you cannot see the soul ripping effects of their illness. What's happening inside the body doesn't often manifest outwardly, and pointing out the lack of evidence of illness can seem to minimize what someone is or has gone through. In the same tune, telling a person how awful they look can only remind them that their disease is getting the best of them. If they are like me, vanity doesn't die hard.
What you can say: Try to avoid comments on appearance. We already know the good, the bad, and the ugly. If you must, try something that no disease can rob them of for example: 'I can still see that twinkle in your eye that I've always loved about you'
2) You're lucky:
Yes, I actually have had a few people say this to me! One person even needed to elaborate on how they would give anything in the world to be able to lie around all day in bed and watch tv. Another Einstein told me how great it must be to have someone wait on me hand and foot and do my housework. While I wanted to scream: "Are you freakin' kidding me?", I realized these poor dear ones had absolutely no concept of what I was actually going through. I could only say that I hope they never, ever get the chance to live our their fantasy in this a cruel way!
What you can say: Just don't go there! :)
3) Let me know if there is anything I can do to help:
I think everyone must get this memo as the perfect one liner to say to someone who is sick. We all know it's a cliche meant to appease a guilty conscious or appear to want to put forth an effort. If you really did want to help, you would find a way! If you are watching someone die or become very sick, you can easily see the plethora of needs. There are about 100 things you could always do to help if you really wanted to actually be a blessing. Don't offer unless you have a plan. Someone who is very sick doesn't want to be a burden, and this statement just "puts the burden back" on the patient.
On one occasion a lady came up to me and said: "I don't cook, I don't like to cook, and it's a blessing to you that I'm not cooking for you...but if there is ever anything else you might need, just let me know."......chuckle chuckle!
What you can say: I'd like to bring your family a meal, would Friday or Saturday work best? I'd love to take the kids off your hands for a bit, does Tuesday work? We're coming over to cut the grass for the family, do you prefer weekends or week days.
4) My thoughts and Prayers are with you.
Guilty! I'm guilty of this, too! However, lesson-learned! It's very sweet to think or pray for someone, but 99.9% of the time, this is another 'feel good comment'. I can say I've probably heard this about 4,592 this year alone. Ok, so maybe not that many, but probably pretty close. It's the 'go to' sick comment, and in the world of Facebook, I've found myself using it quite a bit. Let's keep it in Facebook world, and not in the real world!
What you can say: "You were on my mind all day today. I spent some time in prayer for you and your family this week. How can I pray for you?"
5) How are you?
In my personal situation, this will never have a good answer. I'm sick 24-7. I don't want my illness to define me, but this question pretty much can only sum up that I'm not well. Also, I feel it's asked out of obligation, like every conversation must somehow revolve around the fact that I am indeed sick. Also, how many people really want to know how you are doing....all the ends and outs.
What you can say: "How are you, today? or What were the bright spots of your day? or What exactly are you feeling"
6) I have this great herbal remedy that could cure your incurable disease! Have you tried the natural remedies I told you about yet? You should ditch your doctor and medicines for only all natural foods and vitamins.
While I read about this being a faux pa of things to say to terminally ill patients, I must say it's probably one of my least favorite things I hear. If only you knew to what lengths someone would go to find a cure for their disease. I'm positive the very sick have already researched everything there is out there on the market or popular old wives tales. Your 'extra secret mystery herbal remedy' is so secretive that even the best doctors and researchers in the world have not been informed about its magical powers....you better run right out and buy some stock for it asap. It's best to keep this type of unsolicited advice under wraps.
What you can say: The majority of very sick people are not asking lay people for their medical advice. Unless you are specifically asked or have had their exact illness, keep the potions in the cabinet.
7) Please tell me what the doctors say or your test results.
Not every patient is private. I am a big talker and don't mind sharing some information. However, let that be my choice of what, where, and when, and how I want to share it. After I got some very difficult news, I needed some time to process what I had just been told. For me, this took almost a month before I was ready to make it 'Facebook knowledge'. It needs to be on the patients terms. If we want you to know, we will tell you.
What you can say: Just don't ask. We will let you know when and if we are ready.
8) If you just had more faith (or other things), you would be healed.
As a person who believes in God, has faith, and is known to be a Christian, and a former missionary, I've found myself surrounded by the 'well-meaning,' Bible toting, scripture quoting, religious population. While I appreciate any and all prayers being lifted up for me and my family, the very last thing I need is to hear your personal opinions on MY God journey, my Christianity, or my lack of faith. We all have different views or different interpretations of the Bible. If for one second you could put yourself in my shoes, you would probably surmise the immense internal struggle for answers that exists day in and day out in my world. The 'WHY' can be so overwhelming at times. Bad things do happen to good people, and I must wrestle every day with the fact that I'm living a nightmare and how that may effect my own relationship with my God. All the unsolicited religious rebuking is being done by someone who hasn't walked even one step in the shoes that I've walked miles. This is one venue where I've had some really funny comments. Oh, the things people take the liberty to say in the name of God. One sweet lady even told me how disappointed she was in me that I didn't have enough faith to be healed. That doesn't HELP! I actually love knowing that I'm being prayed for and that there are Christians who will take time out of their busy lives and schedules to care enough about me and my family to ask my God to intervene. However, that's where the line has to be drawn. And please, never, ever say "God only gives us as much as we can handle"......
What you can say or do: Words, sayings, or phrases of encouragements, favorite scriptures that have helped you get over tough times, inspirational music-cds, a daily devotional book, silent prayers, joyful encouragement, or a 'you're not alone' card or note.
9) I miss the 'old' _____________
If you miss the old person or the good 'ole days, we are probably missing them 100 times more! We are aware of the loss in our lives and sometimes even more aware of how our illness has changed others' lives. The guilt that can go along with chronic illness can be daunting, to say the least! Reminding us that we were once a better friend, better family member, better person, better, better, better.....can easily add to the burden that we have already put upon ourselves. Try not to remind us that we've created a void in your life with statements such as these.
What you can say: Find something 'new' that the sick person has done or become that you like about them NOW! or Tell them how they may have spoken in your life one day that they were unaware.
10) Everything will be alright. You are not going to die. You will beat this. God will heal you.
Truth is, nobody knows! You don't know what God has planned for me or anyone. I don't know what the future holds. However, as part of my journey, acceptance is a very key role in being able to cope with a degenerative disease. Remember that acceptance doesn't mean giving up. Those that know me well, know that I'm fighting .....and fighting hard like in 'cue the music in the Rocky movie' kind of fighting. However, in this process, I've had to come to grips with the fact that I'm am sick, everything isn't alright, I will probably die long before I had planned, and this disease isn't curable. Does this mean I'm saying all hope of a chance of getting better is gone? Not at all! However, it would eat me alive if I got up every morning confused as to why I was still sick, if I hadn't allowed acceptance to come in as an important coping mechanism.
What you can say: "I'm in your corner, I'm rooting for you, I want to walk with you during this fight" or something like: "We don't know what the future holds, but I'm glad you're here now, and I thank God for every day He gives us".
11) I can relate.........or .......complaining about your minor medical issues.
Now, if I told you that someone once shared a story with me about a toe fungus and how they could relate to my disease, you'd probably think I was joking...I'm NOT! I've been told stories of the flu, aches and pains, minor illness, and even sleepless nights. I know it's important for people to try to learn how to relate to someone else's pain. I am not a sensitive person, so I totally get it.....and I understand it's our human attempt to try to have empathy. I know before I became sick, I probably couldn't even relate for a second to severe chronic illness. Unless we've walked in those shoes, we cannot relate! Also, if you are aware of the 'life' and burden this person must bear physically, probably hearing you complain about your 2-3 day flu isn't going to go over very well. I've likened my illness to someone having the worst flu of their life, chest pain, difficulty breathing, severe pain all over the body, and being on a twirly-wirly all the time. Except, while your flu goes away after a week, I never, ever have an end to my pain or "flu." While not everyone who is as sick as I am will feel the same, so I won't speak for them all...but for me, I find it very difficult to try to be empathetic to aches and pains at this point. Not being terribly empathetic about aches and pains, doesn't remove my ability to genuinely care for and about people.
What you can say: "I cannot imagine what you are going through."
12) When you get better, we will have to go do this or that
This comment would really only apply to the terminally ill or those with a degenerative illness. The reality of what the future doesn't hold is a hard pill to swallow. We've already played out the scenarios of what we will miss out in life, and don't need a constant reminder of the things we will never be able to do again or do in the first place. Of course, that's a great chance to make new memories of things we CAN still do! For me, I will never travel again, care for my family, or play tennis...but what CAN I still do...that's the key!
What you can say or do: Grab a bottle of wine and a great movies and plan a girl's night IN. Have a Christmas wrapping party. Make a chocolate tasting contest. Be creative. Make new memories...find the "can dos"!
13) Let me know when you are ready for me to leave!
Now, if your momma was anything like mine, she taught you some manners! And even amongst the sick, those manners are still very much in tack. One of the hardest things for someone who is sick to say is: "Please leave". It's an awkward situation and any sweet southern girl will find it difficult to say such things. It's best not to put the patient in that situation.
What you can say or do: Don't ever show up unannounced. If someone is severely ill, you never, ever know what's happening in that moment. Even the kindest of people would find it hard to turn away a visitor. Depending on the pain or the physical strain on the patient, most would recommend no more than a 15 minute visit. Someone once said: "I'll let you get some rest" after a quick visit...and it was music to my ears. As much as I loved seeing them, I was worn out and exhausted.
14) Focusing only on the illness.
For a few months, when things had gotten really scary for me and we weren't sure if my time was up, I realized that no one ever talked to me about anything else except for my illness. I had ultimately become defined by the one thing that had already robbed me of my life, now it had become my life. If people would call or text or visit...the one and only conversation was SICKNESS! But I was so much more than that! I still was a person...I still had dreams, desires, wisdom, stories, and a little bit of life left in me and I was forced into a box. I grew tired of talking about how I was feeling....how I was coping...how I was managing. I wanted to hear about the latest happenings in town, what new movies were coming out, or even a funny story or two.
What can you say: Follow MY lead! Somedays I need to talk about how I feel. Somedays I need you to know I'm hurting both physically and mentally. However, somedays, I just need to be ME...somedays I just need to talk about something else other than my illness!
15) I haven't been in touch because I wanted to give you your space.
There are lots of creative, thoughtful ways to let someone know you are thinking of them without getting in 'their space'. Unless we asked for this space, a friend would want to be there through thick and thin. If you don't know how to do that, take little baby steps. I've expressed before, even the smallest acts of love can go a long-long way. Don't be scared, you can't catch it!
What you can say or do: Most likely this is because YOU are uncomfortable. If that's the case, send little notes in the mail, bake a batch of cookies, or mail them your favorite 'go to' movie. It's really easy to keep in touch in small non-intrusive ways!
Monday, November 4, 2013
PART 2: So what's it really like to be chronically ill-LONELINESS
This is part 2 in my series of 'So, what's it really like to be so sick' when you are so young?
LONELINESS
I approach this subject delicately. It's a very 'real' and vulnerable issue for the severely chronically ill. For many people, it's one of the more difficult issues they have to deal with besides the daily reality of being sick. I feel blessed that this issue has not been my Achilles heel during most of my illness, however, it has plagued me sporadically throughout the last 2 and half years...and also quite recently, in fact.
Not every person who is chronically ill is home bound. My personal situation has left me unable to leave the house unless I go to the doctor or for yet another medical procedure. I also often cannot be around other people due to health reasons. I have a very unpredictable type of day. Some days I may be too sick to lift my head off the pillow and talk, while others I am bubbly and full of 'life' from the bed. This really makes things difficult for me in the loneliness area. I cannot plan anything. My intentions don't often get the memo to my body in time! If I plan something, I'll probably have to cancel, anyway. I quit trying! Being 'sick' in front of other people is difficult, as well. Imagine you have the flu...ya know, the really nasty stomach flu! I can imagine you are probably not inviting a lot of people over to have a 'chat' during that time. My life is a lot like that! Talking on the phone also became a challenge for me due to breathing issues, headaches, nausea, pain, and diminished cognitive function all coming and going at different times. I guess it would be safe to say....this makes socializing a CHALLENGE!
As a former...social butterfly....I have had to deal with this noticeable loss in my life. The very sick weeks are easier to deal with this, because I am too sick to care or even be able to be around others. However, the easier days or weeks can often magnify this need for human contact, intellectual stimulation, and adult conversation that I used to so crave. Like others, who have become quite ill, we are also very different people than we once were before we became sick. Our personalities have changed, our interests have changed, our temperaments and dispositions have changed, our priorities have changed, and our lives have radically changed.
I have begun to try to tackle the loneliness issue privately. No one really wants to admit that they are 'lonely', yet they don't want a visit. I have a need, but it's one that no one can really meet. I cannot do visits or outings so I must deal with this personally. My creativity has had to really come into play. The poor telemarketer who calls me on one of my 'good days'!!!! As friends and acquaintances have fallen by the wayside, we are still left in this long cycle of chronic illness. For some of us, this could potentially go on for year after year. As someone who is sick, we don't make 'great friends' by the true definition. We really can't 'give back' the way many people need or want in the mutual give & take relationship that is friendship. That in itself, makes the long suffering of friendship an extremely rare quality. When the 'newness' of our diagnosis has worn off for our 'friends, family, and associates', we are still stuck with the day in and day out toils of dealing with being sick....and often....with a long illness such as mine...left to deal alone.
For me, personally, I have been able to embrace a few people and family members who have helped with the extreme loneliness that I may experience from time to time. I've even made a few 'new' friends in this journey. Being homebound only magnifies the loneliness of chronic illness, but I can say, I have tried very, very hard not to let this overtake me. Even starting this blog has helped connect in a new way. When I began to lose some of my ability to communicate verbally due to breathing issues, I found this was such a wonderful outlet for me. I even enjoy playing card games online with other people to keep up with some intellectual challenges. While I don't enjoy talking on the phone much at all, I have managed to pin down my mother for long conversations on days I feel better. Anyone dealing with a terminal illness is encouraged to talk with a counselor or psychologist to help 'deal' with the immanent. While it was a new experience for me, I found it was refreshing to have a 3rd party involved who has no invested interest when needing to discuss medical options, transitions, or even loneliness. Being open with my family and husband about what I'm going through internally has also been beneficial in allowing them to try to attempt to meet that need.
I only wonder how many times I passed up an opportunity to make a difference in someone's life who may have been dealing with sickness robbing them of their lives. I do know I could have never related or even put myself in those shoes until now. However, I have almost nothing to offer anyone else...but I can still give a smile to an unfriendly face...I can drop a note to an elderly shut-in...I can send a cookie in the mail to an old friend....I can finally compose that email to a person who made a difference in my life so many years ago......I can share an online deal or recipe....my options are still limitless! It kind of steals our excuses for what's holding us back from being a blessing to someone----somewhere!
LONELINESS
I approach this subject delicately. It's a very 'real' and vulnerable issue for the severely chronically ill. For many people, it's one of the more difficult issues they have to deal with besides the daily reality of being sick. I feel blessed that this issue has not been my Achilles heel during most of my illness, however, it has plagued me sporadically throughout the last 2 and half years...and also quite recently, in fact.
Not every person who is chronically ill is home bound. My personal situation has left me unable to leave the house unless I go to the doctor or for yet another medical procedure. I also often cannot be around other people due to health reasons. I have a very unpredictable type of day. Some days I may be too sick to lift my head off the pillow and talk, while others I am bubbly and full of 'life' from the bed. This really makes things difficult for me in the loneliness area. I cannot plan anything. My intentions don't often get the memo to my body in time! If I plan something, I'll probably have to cancel, anyway. I quit trying! Being 'sick' in front of other people is difficult, as well. Imagine you have the flu...ya know, the really nasty stomach flu! I can imagine you are probably not inviting a lot of people over to have a 'chat' during that time. My life is a lot like that! Talking on the phone also became a challenge for me due to breathing issues, headaches, nausea, pain, and diminished cognitive function all coming and going at different times. I guess it would be safe to say....this makes socializing a CHALLENGE!
As a former...social butterfly....I have had to deal with this noticeable loss in my life. The very sick weeks are easier to deal with this, because I am too sick to care or even be able to be around others. However, the easier days or weeks can often magnify this need for human contact, intellectual stimulation, and adult conversation that I used to so crave. Like others, who have become quite ill, we are also very different people than we once were before we became sick. Our personalities have changed, our interests have changed, our temperaments and dispositions have changed, our priorities have changed, and our lives have radically changed.
I have begun to try to tackle the loneliness issue privately. No one really wants to admit that they are 'lonely', yet they don't want a visit. I have a need, but it's one that no one can really meet. I cannot do visits or outings so I must deal with this personally. My creativity has had to really come into play. The poor telemarketer who calls me on one of my 'good days'!!!! As friends and acquaintances have fallen by the wayside, we are still left in this long cycle of chronic illness. For some of us, this could potentially go on for year after year. As someone who is sick, we don't make 'great friends' by the true definition. We really can't 'give back' the way many people need or want in the mutual give & take relationship that is friendship. That in itself, makes the long suffering of friendship an extremely rare quality. When the 'newness' of our diagnosis has worn off for our 'friends, family, and associates', we are still stuck with the day in and day out toils of dealing with being sick....and often....with a long illness such as mine...left to deal alone.
For me, personally, I have been able to embrace a few people and family members who have helped with the extreme loneliness that I may experience from time to time. I've even made a few 'new' friends in this journey. Being homebound only magnifies the loneliness of chronic illness, but I can say, I have tried very, very hard not to let this overtake me. Even starting this blog has helped connect in a new way. When I began to lose some of my ability to communicate verbally due to breathing issues, I found this was such a wonderful outlet for me. I even enjoy playing card games online with other people to keep up with some intellectual challenges. While I don't enjoy talking on the phone much at all, I have managed to pin down my mother for long conversations on days I feel better. Anyone dealing with a terminal illness is encouraged to talk with a counselor or psychologist to help 'deal' with the immanent. While it was a new experience for me, I found it was refreshing to have a 3rd party involved who has no invested interest when needing to discuss medical options, transitions, or even loneliness. Being open with my family and husband about what I'm going through internally has also been beneficial in allowing them to try to attempt to meet that need.
I only wonder how many times I passed up an opportunity to make a difference in someone's life who may have been dealing with sickness robbing them of their lives. I do know I could have never related or even put myself in those shoes until now. However, I have almost nothing to offer anyone else...but I can still give a smile to an unfriendly face...I can drop a note to an elderly shut-in...I can send a cookie in the mail to an old friend....I can finally compose that email to a person who made a difference in my life so many years ago......I can share an online deal or recipe....my options are still limitless! It kind of steals our excuses for what's holding us back from being a blessing to someone----somewhere!
Thursday, October 31, 2013
PART 1: What's it REALLY like to be severely chronically ill? -Control
PART 1 OF SERIES: What's it REALLY like to be severely chronically ill?
I've fielded a few questions in the past from people who honestly wanted to know...what it was REALLY like to be sick 24-7. I guess it has taken me a long time to be able to answer that question for myself. I have known several friends and acquaintances who suffer from some sort of severe chronic illness. I've watched either close up or from a distance how their lives have changed, and how they dealt with the unexpected journey. While most folks will go through life with some aches and pains, very few of you will ever have to live a life altered by a real debilitating illness. It's a territory that most of us 'younger' people probably have given little to no thought to in the past.
I couldn't have even FATHOMED in my wildest dreams that after just celebrating my 37th birthday, I would become chronically ill. It wasn't in my 'plan' or even on my radar. Like many of you, I had most of my pathway all paved with what I thought my future would hold. I was a very active mom of 3, married to the man of my dreams, and living out my own paradise that I had so thoughtfully executed. I had a core belief system, many friends and activities that I loved, and lots of busy buttons that I would proudly display on my 'busy life' bulletin board. My priorities were those that I had deemed worthy of my precious time and effort. My spiritual walk was one that had been tested and appeared tried and true. I surrounded myself with those people who made me smile or were often 'like minded'. I must say, though, I rarely took much for granted. I truly did love my family, my life, and tried to live most days to the fullest. (Thank God!!!! Cause, I would probably be riddled with a plethora of regret, now.)
I'm approaching the 3 year mark this coming March 2014. My disease process has settled in, and I'm now much more familiar with what to expect. The first year and half was such a complete roller coaster, that I didn't know from week to week what the day would hold, or if I would make a full recovery. I was living each day in confusion, frustration, and uncertainty. Now, I have a lot more understanding of what's happening inside my body. While there is still quite a bit of uncertainty, there is more of a constant in my life. I'm constantly sick now 24-7 without the guess work of maybe today is the day it all goes away. I can probably answer better, now, what is it really like to be chronically ill?
CONTROL:
So many things happen to someone who goes from being healthy to sick overnight or even if the process was more gradual. It's a daily balancing act to not lose yourself. For me, it was the loss of control. As a former 'control freak' .....the loss of control over my life and my body was earth shattering. It was probably the most difficult for me, personally. It not only shook my security, but it stole my spontaneity. Everything around me had changed beyond my control. It was frightening, to say the least! There was no longer anything secure or constant around me that I had put in place, except for the fact that I would wake up sick the next day. I suddenly became afraid of 'change', because change to me now meant something unpleasant.
I was secretly terrified of any new things or, heaven forbid, something to look forward to. I'd learned my lesson, well. If I wanted to go out, attend an event, or plan something....my body was more than likely not going to cooperate. This in itself was daunting, not to mention the fact, that my inability to participate could or would disappoint someone or ruin another event. I won't say this has gotten much better, because as a parent, you will automatically feel guilt for ruining a planned outing. However, I've gotten much better about accepting the fact that planning is no longer up to me! I wish I could say it gave me a sense of relief not to have to be a 'planner', but that is just not the case. There is something very secure about being able to know what to expect and when to expect it. It's been a good lesson, however, in learning to bob and weave at the balls that life is throwing. I've never been one to 'fall apart' in face of adversity, but I will say learning how to react to the unexpected is a daily juggling act. I have seen that my children have grown quite a bit from just that one concept. I guess it's a life lesson they got to learn very early. (always a silver lining)
My best coping mechanism for 'control' has been acceptance that things will change and they will be beyond my control. And to try to keep things around me as constant and as safe and secure as possible. This could be as simple as a daily routine, preparing the family in advance that I will not be attending something, or slowly adjusting to any new change that will occur. Magic cure? Not by a long shot...but being afraid of change is NOT an option here!
Many of these things are me being....QUITE real, vulnerable, and intimate. However, what we deal with in life is nothing less. I'm laying it all out there in hopes that someone...somewhere....hopefully in a much less difficult circumstance than myself can grab life by the horns and ride it in the wind without looking back...and most importantly WITH NO REGRETS!
I will be writing more about the many 'changes' and the coping mechanisms we have learned along the way when dealing with what's it REALLY like to be chronically ill.
Other topics to come in dealing with chronically illness and the following issues:
FRIENDSHIPS
LONELINESS
SPIRITUAL
TOLERANCE & EMPATHY
PARENTING
JOY
GUILT
MARRIAGE
BUCKET LISTS
DENIAL vs FAITH
ACCEPTANCE vs GIVING UP
Tuesday, October 29, 2013
Sunday, October 27, 2013
So, what is dysautonomia? Why is there very little information? Why is most of the information online WRONG?
DYSAUTONOMIA is a very, very broad term to describe a mountain of conditions all effecting the Autonomic Nervous System.
There can be very mild forms of dysautonomia to the very severe and even fatal. The term is almost as broad as the disease 'cancer'. It encompasses so many different types of illness'.
When I first learned I had a form of dysautonomia, I did what most people do....I took straight to Google. I was bombarded with a plethora of information. I was immediately relieved to find out it was a rather 'mild' condition that effected mostly just young women and something that you will 'out grow'. WOW, THAT INFORMATION WAS ALL WRONG!
It turns out, there are MANY forms and types, but since many of them are quite rare, there is very little information available. Only the more mild form of dysautonomia seems to yield any online information. There is autonomic dysfunction and autonomic failure. I found through the last 2 years, that some of the forms are so 'new' to doctors and research, that many people in the medical field are not yet even trained on diagnosing or treating these diseases. It's often times a 'mystery' illness. In my case, it took almost a year before I was properly diagnosed, and I had to go all the way up to Mayo Clinic for accurate testing. My local doctors even admitted that this was well beyond their scope of training. I have had more than one doctor Wikipedia my 'disease' right there in front of me.
Since there are many varying degrees of severity, types, and forms, I found the online information to be quite vague. This added to a lot of my own personal frustration. I found it impossible to learn, research, or even share about my own disease. To add insult to injury, since I have the more 'rare' form of dysautonomia, I couldn't find any support from others online or elsewhere. As of today, there is still not even a diagnosis code for what I have. Because of my need to be proactive in my medical care, I was beyond frustrated in the lack of knowledge, research and information available. It took a long time for me to understand more of why this was the case. I, personally, hadn't responded to any medications that were recommended for my illness. I wasn't getting any better. My doctors resorted to many 'off-label' medications, as well. I still didn't respond to anything. I took to the internet again. I just couldn't find anyone else out there like me. My doctor treats only the 'worse of the worse', and yet I was the only patient to not respond to any type of medical therapy. Well, that answered my question! There are so, so few people like me out there in the world. At the time of this writing, I've heard there are less than 60,000 reported cases worldwide of the neurodegenerative disease. I guess people are not exactly throwing money out the window at the research and funding!!!! This is considered an 'orphan' disease. Clinical trials for true complete autonomic failure are very difficult to complete. The people in these studies are often very, very sick people. Many of them may die off before the long term trials needed for FDA approval are complete. Parkinson's patients can often have autonomic failure at the end of their disease progression, and because their research is well-funded, they have been able to push through some clinical trials currently in the works. This will considerably allow more information, research, and funding for those who are living with the truly disabling effects of dysautonomia.
I have purposely not shared my own personal exact diagnosis for several reasons:
#1. While my outlook may seem quite bleak, I know that the information online is not yet complete. The medical community hasn't yet finished their long term research. My doctor, who is considered the leading authority on this disease, will be the first to say that even the genetic factors of the disease haven't even been identified, yet. There are so many things left to study and research. Autonomic failure is often researched in much older patients, and I'm my own unique case! I haven't followed any of the curves so far, so I will not put the label on it.
#2. I'm currently involved in and have been in the past, on many NEW treatments and drugs that are either not yet available here in the U.S. or are so new, they've never been recorded to date. It's important that other patients who may stumble upon this site not get their hopes up, assume a new drug is being released, or push to try a treatment that may prove to be unsafe.
#3. I don't want this to become a 'medical' information site, but more of my own personal illness journey and how I'm choosing to overcome it, mentally, every day!
A few sites online can be helpful. I will try to add links.
http://dysautonomia.med.nyu.edu/autonomic-disorders
http://www.dinet.org
http://www.dana.org/news/brainhealth/detail.aspx?id=9780
There can be very mild forms of dysautonomia to the very severe and even fatal. The term is almost as broad as the disease 'cancer'. It encompasses so many different types of illness'.
When I first learned I had a form of dysautonomia, I did what most people do....I took straight to Google. I was bombarded with a plethora of information. I was immediately relieved to find out it was a rather 'mild' condition that effected mostly just young women and something that you will 'out grow'. WOW, THAT INFORMATION WAS ALL WRONG!
It turns out, there are MANY forms and types, but since many of them are quite rare, there is very little information available. Only the more mild form of dysautonomia seems to yield any online information. There is autonomic dysfunction and autonomic failure. I found through the last 2 years, that some of the forms are so 'new' to doctors and research, that many people in the medical field are not yet even trained on diagnosing or treating these diseases. It's often times a 'mystery' illness. In my case, it took almost a year before I was properly diagnosed, and I had to go all the way up to Mayo Clinic for accurate testing. My local doctors even admitted that this was well beyond their scope of training. I have had more than one doctor Wikipedia my 'disease' right there in front of me.
Since there are many varying degrees of severity, types, and forms, I found the online information to be quite vague. This added to a lot of my own personal frustration. I found it impossible to learn, research, or even share about my own disease. To add insult to injury, since I have the more 'rare' form of dysautonomia, I couldn't find any support from others online or elsewhere. As of today, there is still not even a diagnosis code for what I have. Because of my need to be proactive in my medical care, I was beyond frustrated in the lack of knowledge, research and information available. It took a long time for me to understand more of why this was the case. I, personally, hadn't responded to any medications that were recommended for my illness. I wasn't getting any better. My doctors resorted to many 'off-label' medications, as well. I still didn't respond to anything. I took to the internet again. I just couldn't find anyone else out there like me. My doctor treats only the 'worse of the worse', and yet I was the only patient to not respond to any type of medical therapy. Well, that answered my question! There are so, so few people like me out there in the world. At the time of this writing, I've heard there are less than 60,000 reported cases worldwide of the neurodegenerative disease. I guess people are not exactly throwing money out the window at the research and funding!!!! This is considered an 'orphan' disease. Clinical trials for true complete autonomic failure are very difficult to complete. The people in these studies are often very, very sick people. Many of them may die off before the long term trials needed for FDA approval are complete. Parkinson's patients can often have autonomic failure at the end of their disease progression, and because their research is well-funded, they have been able to push through some clinical trials currently in the works. This will considerably allow more information, research, and funding for those who are living with the truly disabling effects of dysautonomia.
I have purposely not shared my own personal exact diagnosis for several reasons:
#1. While my outlook may seem quite bleak, I know that the information online is not yet complete. The medical community hasn't yet finished their long term research. My doctor, who is considered the leading authority on this disease, will be the first to say that even the genetic factors of the disease haven't even been identified, yet. There are so many things left to study and research. Autonomic failure is often researched in much older patients, and I'm my own unique case! I haven't followed any of the curves so far, so I will not put the label on it.
#2. I'm currently involved in and have been in the past, on many NEW treatments and drugs that are either not yet available here in the U.S. or are so new, they've never been recorded to date. It's important that other patients who may stumble upon this site not get their hopes up, assume a new drug is being released, or push to try a treatment that may prove to be unsafe.
#3. I don't want this to become a 'medical' information site, but more of my own personal illness journey and how I'm choosing to overcome it, mentally, every day!
A few sites online can be helpful. I will try to add links.
http://dysautonomia.med.nyu.edu/autonomic-disorders
http://www.dinet.org
http://www.dana.org/news/brainhealth/detail.aspx?id=9780
Saturday, October 26, 2013
Friday, October 25, 2013
MY ILLNESS STORY, How my world changed in a moment.
Trying my hand at a new blog. This is a place for me to share my unexpected journey. However, as you will soon see, while most of my days can revolve around my illness, I don't usually let my world revolve around it. This disease will not define me or our family, even if it's trying harder and harder day by day!
My STORY!
Over 2.5 years ago, in early 2011, I was a very active soccer mom of 3 children. I was about as happy as one could get. Everything seemed to be almost perfect. My husband had a wonderful job, my kids were all thriving and mostly healthy, and I had an amazing life! I was living my dream of being a stay at home mom! Then one day everything changed!
I was in the thralls of training for tennis. I played 3-4 times a week, and I worked out about 7-10 hours every week. My passions were cooking, sewing and designing for my daughter, traveling, shopping, reading, and tennis. We had a very active family. We traveled every chance we could get. Our family vacations were always a highlight. My husband and I had an amazing marriage and friendship (still do). My kids did well in school, we were active in our church, and we were a typical family with typical family ups and downs. We had just returned from a 2 week New England trip with the family. That's when our world got turned upside down!
With no warning and for no known reason,.....I became very sick. It was like a light switch! I became quite ill and ran back and forth to doctors knowing something had changed and was deeply wrong. This went on for 4 months. Doctors saw how 'healthy' and active I was, and chalked it up to Meniere's disease and/or Vestibular Migraines I had suffered with for 10 years. HOWEVER, one day, with zero warning, all hell broke loose and I fell to the floor! I was rushed to the hospital and had to be hospitalized for a long 2+ week stay completely bed bound with no explanation of what was happening to my body. That's when our new journey began. No one dreams that in their 30's the next 2 years of their life will be visiting world renowned hospitals and doctors, spending literally week after week in hospitals and emergency rooms, shopping for the right wheel chair, having surgeries, picc lines, pill after pill, injections, and then eventually talking about 'sweet, sweet time'.
I spent the next year trying to find out why I had become so sick, and if I would ever be well again. One day I just couldn't STAND UP anymore. That's not some figurative speech, I literally could no longer stand up. Every time I tried to stand, I would pass out or get so dizzy that I would fall to the floor. What was happening inside my body? After 12 hospitalizations in a solid year, I was finally sent to a Chicago hospital for a week long evaluation. Northwestern Hospital then sent me to Mayo Clinic in Rochester, Mn, after I was told I was beyond their scope of expertise. It was there that they realized what exactly was happening inside my body, and that there was a problem with my Autonomic Nervous System. It wouldn't be until 8 months later until we would know the whole scope of my illness. I was able to get in with the top doctor IN THE WORLD for Autonomic Failures in Toledo, Ohio. With his expertise and knowledge, I began a very aggressive treatment program to begin to my 'new life'.
My disease process is a very rare and a complex one. Many people, even many doctors have never heard of it or didn't know it even existed. The Autonomic Nervous Systems basically controls everything your body does involuntary. That would include: breathing, heart rates, blood pressures, temperature control, renal, digestive, and others. Basically, everything important! When this system begins to fail, as in my case, the entire systems gets effected. When I stand, the necessary constrictors to push blood to the heart and brain like in a normal individual, are unable to get the blood where it needs to go for the body to maintain posture. If you don't have enough blood pumping through that heart and eventually to the brain, you will pass out. Furthermore, the system acts like a thermostat for your body. In individuals with autonomic dysfunction, the thermostat begins to go haywire. It doesn't know up from down, right from left. The entire 'needle' so to speak, moves side to side like a pendulum. That means for no reason your heart rates and blood pressures can go very high to very low, temperature control is completely out of wack, the entire system just cannot regulate itself any longer. In my case, it became so bad that I began to loose consciousness while lying down from such low heart rates. After a very scary episode last November that could have very well been the end….As a result I needed a pacemaker implanted to not allow my heart to not plummet. This was truly rock bottom, or so I thought at the time.
After getting a pacemaker at the age of 38, I realized my world would never, ever be the same again. However, the doctors, my husband, and I all had great hopes that this would provide me some type of quality of life. Unfortunately, it did not. I had a special type of pacemaker implanted to not only regulate heart rhythm, but also detect sudden changes in blood pressure. While it worked in part, it wasn't enough. I continued to be very, very sick. I had many close calls, and my body has literally up and down like a roller coaster for months and months. I continued to pass out if I tried to do anything at all. I felt sick all day, ever day. Since Oct. 2012, I haven't been able to even sit in a chair for more than 3 minutes. I haven't stood for more than that, either. My existence has basically left me in a supine position. I had to have a special wheel chair made to recline and allow my legs to be up at all times. (which is obtrusive and not practical). I cannot attend church, the movies, restaurants, my children's events, or even sit at a table and have dinner with my family. I'm in the bed all day and night. On a good day, I'm lucky enough to go to the kitchen to get my own glass of water. Everything I loved and enjoyed is taken from me. I cannot cook, sew, serve my family, shop, or even dream of exercising. Trying to come up with a hobby from a lying position with your head on the pillow is a daily task. I cannot read much due to the eye pain and lack of blood flow. I cannot sing or even talk for long periods of time due to breathing difficulty. I cried the first time I realized I couldn't read a book to my daughter out loud. My creativity has had to be taken up a notch. Some days the 'pain' is intolerable, while others I may have moments of relief. I have endured pain levels that I couldn't really even put into words. Everyday consists of some pain and discomfort for over 2 years now, however, some are more manageable than others. I've had 3-4 times over the last year and half that have been a 'tease' and allowed me to do more and feel better for a brief period of time. While I love those times and go crazy with creativity, I've found it to be a very cruel tease in the long run.
The days that are easier, are often sometimes even more difficult for me. When I feel too sick to move, I'm perfectly content to just lie here staring out the window. However, the days that are less painful, tend to make me want to climb a mountain or run a marathon, but I must stay lying in the bed despite the burst of energy. It kills me more when my body cannot cooperate with my heart or my intensions or my dreams or goals! Of course, every good day is a blessing! I am beyond thankful for the moments that I get to stay in the game. I love being involved with my family...even from this bed! I long and crave for the painless moments that allow me to laugh, smile, talk, engage, and be apart of my kids' lives. The little moments are so much more precious to me, now!
After multiple failed treatments, every off label drug tried, and zero signs of improvement, the doctor came in the room and looked at my husband and I in the eyes and told us that there was no longer any chance that I would recover from this illness. We may be able to ease the symptoms, but I will not get better. You can or never will fully prepare yourself for those words. No matter how strong you are, or how prepared we were to hear them, it was nothing less than a knife piercing our hearts of hope. We completely understand, medically, that a full recovery is extremely low, but I still cannot seem to bring myself to clean out my last tennis drawer! Why am I keeping those cute little tennis skirts? What part inside of me won't let me give them away? At first, I thought it was crazy denial....but I think I've come to realize it's my last 'little hope' that maybe...just maybe...this nightmare could end one day, and if I get rid of them, I've gotten rid of my sliver of 'hope' that keeps me going back to the doctor and trying new treatments. Unfortunately, I just have to sit and wait. There is no time frame given to me....it could be quick...it could be long and drawn out...I must just literally, lie here day by day...waiting!
My doctors put me in the ICU in Oct 2013 for a ground-breaking trial of 2 drugs that could potentially, synthetically constrict the blood vessels enough to allow me to stand. The first drug, which had been tried only a few times, was a complete NO GO! My heart didn't react well, and while it allowed me to stand for a whopping 7 minutes, I had great difficulty. The second drug, with a room filled with doctors watching medical history being made, showed very minor signs of improvement, but did regulate my heart and blood pressure during the trial. I will be the very first person, recorded, in the world to have this drug being administered outside of the ICU. It will run continuously at home through a pump 24/7. (I will post more about this at a later time)
This is just a very brief synopsis of what the last 2.5 years have looked like for me. I've tried to provide a small glimpse into my reality without adding the 'woe is me' element. My story is DRAMATIC, my story is, at times, unimaginable, my story is one I never, ever dreamed or planned on making ...my story! However, it is MY story. It's all I have to work with, for now! When my body allows, I've chosen to 'dance' it out! I won't say the days, especially lately, are not often filled with desires to scream.....cause they are!!!!! There are many days when I cannot imagine living another day of this type of life..... But...there is always a BUT.....I have chosen to live the life I was dealt with to the FULLEST! My 'can'ts' are numerable, but finding my 'cans' have continued to give me joy. I have found the silver linings in most of the days. Some times it's harder and harder to look past the dark, dark, gloomy skies and find those silver linings, but I try! It can be as simple as getting another chance to hold my child, or as huge as cutting my own apple today....no matter where we look, there is ALWAYS a silver lining!
My STORY!
Over 2.5 years ago, in early 2011, I was a very active soccer mom of 3 children. I was about as happy as one could get. Everything seemed to be almost perfect. My husband had a wonderful job, my kids were all thriving and mostly healthy, and I had an amazing life! I was living my dream of being a stay at home mom! Then one day everything changed!
I was in the thralls of training for tennis. I played 3-4 times a week, and I worked out about 7-10 hours every week. My passions were cooking, sewing and designing for my daughter, traveling, shopping, reading, and tennis. We had a very active family. We traveled every chance we could get. Our family vacations were always a highlight. My husband and I had an amazing marriage and friendship (still do). My kids did well in school, we were active in our church, and we were a typical family with typical family ups and downs. We had just returned from a 2 week New England trip with the family. That's when our world got turned upside down!
With no warning and for no known reason,.....I became very sick. It was like a light switch! I became quite ill and ran back and forth to doctors knowing something had changed and was deeply wrong. This went on for 4 months. Doctors saw how 'healthy' and active I was, and chalked it up to Meniere's disease and/or Vestibular Migraines I had suffered with for 10 years. HOWEVER, one day, with zero warning, all hell broke loose and I fell to the floor! I was rushed to the hospital and had to be hospitalized for a long 2+ week stay completely bed bound with no explanation of what was happening to my body. That's when our new journey began. No one dreams that in their 30's the next 2 years of their life will be visiting world renowned hospitals and doctors, spending literally week after week in hospitals and emergency rooms, shopping for the right wheel chair, having surgeries, picc lines, pill after pill, injections, and then eventually talking about 'sweet, sweet time'.
I spent the next year trying to find out why I had become so sick, and if I would ever be well again. One day I just couldn't STAND UP anymore. That's not some figurative speech, I literally could no longer stand up. Every time I tried to stand, I would pass out or get so dizzy that I would fall to the floor. What was happening inside my body? After 12 hospitalizations in a solid year, I was finally sent to a Chicago hospital for a week long evaluation. Northwestern Hospital then sent me to Mayo Clinic in Rochester, Mn, after I was told I was beyond their scope of expertise. It was there that they realized what exactly was happening inside my body, and that there was a problem with my Autonomic Nervous System. It wouldn't be until 8 months later until we would know the whole scope of my illness. I was able to get in with the top doctor IN THE WORLD for Autonomic Failures in Toledo, Ohio. With his expertise and knowledge, I began a very aggressive treatment program to begin to my 'new life'.
My disease process is a very rare and a complex one. Many people, even many doctors have never heard of it or didn't know it even existed. The Autonomic Nervous Systems basically controls everything your body does involuntary. That would include: breathing, heart rates, blood pressures, temperature control, renal, digestive, and others. Basically, everything important! When this system begins to fail, as in my case, the entire systems gets effected. When I stand, the necessary constrictors to push blood to the heart and brain like in a normal individual, are unable to get the blood where it needs to go for the body to maintain posture. If you don't have enough blood pumping through that heart and eventually to the brain, you will pass out. Furthermore, the system acts like a thermostat for your body. In individuals with autonomic dysfunction, the thermostat begins to go haywire. It doesn't know up from down, right from left. The entire 'needle' so to speak, moves side to side like a pendulum. That means for no reason your heart rates and blood pressures can go very high to very low, temperature control is completely out of wack, the entire system just cannot regulate itself any longer. In my case, it became so bad that I began to loose consciousness while lying down from such low heart rates. After a very scary episode last November that could have very well been the end….As a result I needed a pacemaker implanted to not allow my heart to not plummet. This was truly rock bottom, or so I thought at the time.
After getting a pacemaker at the age of 38, I realized my world would never, ever be the same again. However, the doctors, my husband, and I all had great hopes that this would provide me some type of quality of life. Unfortunately, it did not. I had a special type of pacemaker implanted to not only regulate heart rhythm, but also detect sudden changes in blood pressure. While it worked in part, it wasn't enough. I continued to be very, very sick. I had many close calls, and my body has literally up and down like a roller coaster for months and months. I continued to pass out if I tried to do anything at all. I felt sick all day, ever day. Since Oct. 2012, I haven't been able to even sit in a chair for more than 3 minutes. I haven't stood for more than that, either. My existence has basically left me in a supine position. I had to have a special wheel chair made to recline and allow my legs to be up at all times. (which is obtrusive and not practical). I cannot attend church, the movies, restaurants, my children's events, or even sit at a table and have dinner with my family. I'm in the bed all day and night. On a good day, I'm lucky enough to go to the kitchen to get my own glass of water. Everything I loved and enjoyed is taken from me. I cannot cook, sew, serve my family, shop, or even dream of exercising. Trying to come up with a hobby from a lying position with your head on the pillow is a daily task. I cannot read much due to the eye pain and lack of blood flow. I cannot sing or even talk for long periods of time due to breathing difficulty. I cried the first time I realized I couldn't read a book to my daughter out loud. My creativity has had to be taken up a notch. Some days the 'pain' is intolerable, while others I may have moments of relief. I have endured pain levels that I couldn't really even put into words. Everyday consists of some pain and discomfort for over 2 years now, however, some are more manageable than others. I've had 3-4 times over the last year and half that have been a 'tease' and allowed me to do more and feel better for a brief period of time. While I love those times and go crazy with creativity, I've found it to be a very cruel tease in the long run.
The days that are easier, are often sometimes even more difficult for me. When I feel too sick to move, I'm perfectly content to just lie here staring out the window. However, the days that are less painful, tend to make me want to climb a mountain or run a marathon, but I must stay lying in the bed despite the burst of energy. It kills me more when my body cannot cooperate with my heart or my intensions or my dreams or goals! Of course, every good day is a blessing! I am beyond thankful for the moments that I get to stay in the game. I love being involved with my family...even from this bed! I long and crave for the painless moments that allow me to laugh, smile, talk, engage, and be apart of my kids' lives. The little moments are so much more precious to me, now!
After multiple failed treatments, every off label drug tried, and zero signs of improvement, the doctor came in the room and looked at my husband and I in the eyes and told us that there was no longer any chance that I would recover from this illness. We may be able to ease the symptoms, but I will not get better. You can or never will fully prepare yourself for those words. No matter how strong you are, or how prepared we were to hear them, it was nothing less than a knife piercing our hearts of hope. We completely understand, medically, that a full recovery is extremely low, but I still cannot seem to bring myself to clean out my last tennis drawer! Why am I keeping those cute little tennis skirts? What part inside of me won't let me give them away? At first, I thought it was crazy denial....but I think I've come to realize it's my last 'little hope' that maybe...just maybe...this nightmare could end one day, and if I get rid of them, I've gotten rid of my sliver of 'hope' that keeps me going back to the doctor and trying new treatments. Unfortunately, I just have to sit and wait. There is no time frame given to me....it could be quick...it could be long and drawn out...I must just literally, lie here day by day...waiting!
My doctors put me in the ICU in Oct 2013 for a ground-breaking trial of 2 drugs that could potentially, synthetically constrict the blood vessels enough to allow me to stand. The first drug, which had been tried only a few times, was a complete NO GO! My heart didn't react well, and while it allowed me to stand for a whopping 7 minutes, I had great difficulty. The second drug, with a room filled with doctors watching medical history being made, showed very minor signs of improvement, but did regulate my heart and blood pressure during the trial. I will be the very first person, recorded, in the world to have this drug being administered outside of the ICU. It will run continuously at home through a pump 24/7. (I will post more about this at a later time)
This is just a very brief synopsis of what the last 2.5 years have looked like for me. I've tried to provide a small glimpse into my reality without adding the 'woe is me' element. My story is DRAMATIC, my story is, at times, unimaginable, my story is one I never, ever dreamed or planned on making ...my story! However, it is MY story. It's all I have to work with, for now! When my body allows, I've chosen to 'dance' it out! I won't say the days, especially lately, are not often filled with desires to scream.....cause they are!!!!! There are many days when I cannot imagine living another day of this type of life..... But...there is always a BUT.....I have chosen to live the life I was dealt with to the FULLEST! My 'can'ts' are numerable, but finding my 'cans' have continued to give me joy. I have found the silver linings in most of the days. Some times it's harder and harder to look past the dark, dark, gloomy skies and find those silver linings, but I try! It can be as simple as getting another chance to hold my child, or as huge as cutting my own apple today....no matter where we look, there is ALWAYS a silver lining!
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