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.
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