So...where is Melanie?

I have been pretty MIA on my blog in the last few weeks and have not been updating much.  Why? you may ask.  Well, I haven't been on computer lately.  There has been a huge turn of events.......

As I have posted the last few months, I have been slowly making some interesting improvements since last February.  They have been modest, but consistent improvements.  I had been using my recumbent bike religiously...even on my really icky days.  I had been slowly pushing the envelope, so to speak, with every day tasks.  My stand times had continued to increase and my endurance had been slowly creeping upward.  Just as I had thought I'd reached my maximum, I got a second wind.

Over the last 6 weeks or so, I have begun to make some significant improvements.  The roadblock that I had seemed to reach has been slowly coming down piece by piece.  My confidence has also begun to soar as I tested new boundaries.  I have finally broken down some major walls and have and can honestly say that I've made some meaningful improvements!

I have been increasing my walking, stationary biking, and cooking time day by day.  I've gone from 90 seconds of walking to about 30 minutes (brisk walking in the neighborhood).  I've gone from cutting an apple to making a full dinner (some days).  I've gone from recumbent bike to speeding around the neighborhood with the wind in my hair!  I've played ping-pong, stood in a store, and danced it out all for the first time in 2 long years!!!!!

While I'm dancing, walking, cooking, playing, talking, laughing, and loving life.....I still cannot put my legs down for any significant amount of time.  This is so puzzling to me.  I can walk around and really exercise, but the second I quit moving I begin to feel ill.  I'm also still battling with disabling dizziness, lightheadedness, off balance, nausea, low blood pressures, and significant blood flow issues.  As long as I have such low plasma levels, I will probably continue to have these symptoms.  Mayo Clinic is still working on this, and my visit in October will hopefully yield some new suggestions and treatments.  My heart also continues to be a bit of a pain at times, but doesn't slow me down very much.  I can feel relatively well for several days before the dizziness returns and knocks me down for a week or 2.  My mother is currently here working on this with me.  We are coming up with strategies to combat this thorn in my side.  I am never fully 'pain free', and I am praying and hope that that will be the next exciting hurdle I leap across.

In the meantime, I'm rejoicing in the joy of today...and for a change...it's not something I have to force myself to do....Joy is coming on like a flood each day!  I am a little frustrated at times because now that I am able to do more, I have more to lose.  I can't stand having to stop something because my body won't behave naturally.  I will have a long----long road of rehab and recovery ahead of me if I do continue to improve.  After 2 years in the bed, my body has a long way to go!  However, with 3 walks a day, a bike ride, and some home exercises, I would say I will knock that part out with all the 'heart' you can imagine!

Can you possibly imagine that after 3.5 years of illness and 2 years of being bed bound, I am jumping about the house and seeing the beauty in the smallest of things.  I took a short walk in our woods behind our home and actually heard the crackling of the twigs beneath my feet.  I walked into a store (for only a few moments, of course) and got to look "normal" for the first time in 2 years.  I've felt the wind blowing in my hair as I biked down the street.  I've been able to serve my family (my hearts' greatest desire) for meals once again.  2 years ....2 LONG-LONG-LONG-LONG years in the bed...nothing is going to go unnoticed, untried, or unchanged!   It's like the song says..."and if you get the choice to sit it out or dance, I hope you dance."  Well, I'm dancing...and often to my own tune.  I'm sure the people in Steinmart thought my mother and I were crazy dancing to the music, but I was on my OWN FEET ...and we chose to dance!

For now, I'm needing to focus on the work ahead, months and months of rehab (again), the physical stumbling blocks ahead of me, the continued research on why my body doesn't always behave well, finding the how and why my body will suddenly 'stop', and learning to re-do many daily tasks.   I am still in shock right now and everything is quite surreal for us all.  We don't want to get too excited! (been there-done that)  But for now...if you need me, try the bike, the pool, the woods, the neighborhood, or maybe even a restaurant! :)

Health update July 2014

We've been back from Mayo for a little over 3 weeks now.  Things have been really busy for our family around here.  (Of course, with 3 kids and 3 separate schedules...when is it not?)
My stand time over the last few months has gone up again.  I can stand anywhere from 5-20 minutes.  The times I get to be up and around for 20 minutes are huge blessings!  I've taken full advantage of them.  I cannot stand in one place, but if I'm moving around, somedays I can even cook a small meal with help.  I cooked something for the family for the first time in YEARS!

With all the blessings of standing longer, I've also had some lows.  I'm battling with chronic dizziness again.  This happens every 3-4 months and lasts for weeks.  It can get quite annoying.  My blood pressures are lower than normal and making my days not as cheerful.  I've been able to do 3-7 minutes at a time on the recumbent bike for months now, but am frustrated with the dizzy spells making me not eager to do so.  When I'm not up and about, I'm usually not feeling very well.  I have to be in bed several hours a day with my head on the pillow.  It's truly a crazy roller coaster ride each day.  (So much uncertainty each day)  Some of the revealing test data has given me some peace when certain things arise.  Just the new understanding of why it's happening to me has been very freeing!

I'm continuing some of my testing at home until I return to Mayo in October for another round of tests.  My biggest challenge right now is keeping my mind OFF of my illness.  After 2 intense weeks at Mayo, it was 24/7 focus on 'sickness.'  I have to work very hard to keep my mind on my family, my hobbies, my life, and the summer!  It's very important for anyone suffering with chronic illness to not allow the diagnosis, the information, the tests, and the illness to become all consuming.  For that reason, I'm not talking much about the upcoming return trip to Mayo or how I'm feeling.  I can't ignore how crappy I feel, but after a prolonged focus on my symptoms, it's time to put that to rest for the next 3 months and focus on family!  It's easier said than done----trust me on that one!

So, unless there is a big change, I probably won't be doing much 'health' updates for the next few months.  I will continue to blog about living life with chronic illness and about life.  I cannot escape my illness or its immense limitations, but I can allow the day to be about LIVING and not about sickness.

(read more about living life with chronic illness by clicking on the links to the left)

THE FIRST MEAL I HAVE MADE FOR MY FAMILY IN YEARS.  I HAD TO HAVE SOME HELP GETTING THE THINGS IN AND OUT OF FRIDGE AND CUTTING UP THE VEGGIES, BUT I WAS ABLE TO COOK MYSELF!

You don't beat chronic illness, you live with it!

Does anyone really ever learn to live with chronic illness?  How can a person resolve to live with constant pain and chronic illness for the rest of their lives?  Each battle is so unique and each person has their own journey.  However, there is a common thread.  Living with chronic illness is not only a difficult challenge day in and day out, but also something that will shape the rest of your life.  While someone cannot control their illness, they do have some power over how the illness will control them.

Let's clarify something here for those who are not familiar with chronic illness.
Chronic illness is NOT cancer. You don't 'fight' it. You don't 'beat' it. You cannot 'will' it away, or believe it doesn't exist.  We do not use the words 'cure' to mean 'treat', or 'fight' to mean 'deal' with.

Chronic Illness is:

• Dealing with
• Coping
• Managing
• Containing
• Living with
• Controlling
• Putting up with
• Handling
• Living with

Managing and dealing with chronic illness require that you develop coping mechanisms to move forward with the goal to minimize suffering and maximize daily living as much as possible. For some diseases there are therapies, treatments, and medications to help ease the pain and the progression of the disease and its effects.  For others, it's learning daily, to set good parameters and limitations to reduce pain and stress on the body.  

Nearly 1 out of every 2 Americans suffer from some sort of chronic illness (approx 133 million).  Over 26 million Americans have some sort of severe disability/illness.  While some diseases are due to poor health habits, many are genetic, contracted, or of no fault of the patient.  Chronic illness can be anything from fibromyalgia, diabetes, arthritis, to such things as  Crohn's, lupus, cardiovascular conditions/diseases, dysautonomias, multiple sclerosis, Parkinson's, rheumatoid arthritis, and so many more!   7 out of 10 deaths in the U.S. are from chronic illness alone.  The severity and the longevity of the illness can be as different as night and day. But learning to live with any chronic illness can take its toll on the individual and their family and be a daunting daily task just to thrive.

In addition to dealing with their individual disease or illness and all that it entails, many chronically ill patients can and do often suffer from other side-effects from being chronically ill.  I've tried to research (and, of course, use some from personal experience) a few of the most prominent things a chronic illness sufferer may have to deal with in addition to their already difficult consolation of disease symptoms.

• Depression
• Poor nutrition due to lack of appetite or overeating
• Sleeplessness
• Isolation
• Aches and pains from lack of ability to exercise
• Feeling of doom or fear
• Medicinal side-effects
• Lack of intimacy
• Loneliness
• Stress
• Lack of emotional or physical support
• Anger
• Headaches
• Financial difficulties due to expensive medical treatments and/or loss of work
• Loss of relationships
• Inability to participate in normal activities of life due to physical limitations or lack of mobility access in public places
• Physical sensitivities: such as foods, lights, chemicals, noises
• Lack of activities and social outings
• Guilt
• Lack of control over life and circumstances
• Burden to caregivers and family
• Inability to lead a 'normal' life, career, or education
• Fatigue
• Feeling overwhelmed
• Constant focus on the illness and not the individual
• And I'm sure there are many, many more!

So, if nearly 1 out of every 2 Americans deal with some sort of chronic illness, where do we go from here?  

What are some ways to deal with and cope with chronic illness?

• If you can change your lifestyle to fix your illness....DO IT! (e.g. some types of diabetes, hypertension, some forms of heart disease, and a few others)
• Get informed!  Learn about your disease so that you can help yourself.  Knowledge is power.
• Find a good doctor.  This is imperative to your care.  You need to know you are trying the best medications and therapies to ease the pain and discomfort.  Know that you doctor is on your team.
• Seek support from others who are suffering from some sort of illness similar to yours.
• Watch your mental health.  Seek professional counselors for those dealing with severe chronic illness or life altering diseases.  You can't do this on your own.  Dealing with the guilt, fear, depression, and dramatic changes can be overwhelming.
• Keep active!  Easier said than done.  But as someone who has had as little as 90 seconds of stand time, there is always something physical that you can do, even from the bed.  It helps your muscles, aches and pains, and mental health.  It can be as simple as bed leg raises, just do it every day!
• Think positively!  Again, easier said than done!  I choose joy!  It's a choice even in the face of severe physical limitations and pain.  People who see the good in life tend to deal with chronic illness easier than others.  Just choose joy!
• Be deliberate about your circle of support.  You may have to do some pruning along the way.  Not everyone in your family or circle of friends will be your support system.  You need people who will encourage, be present, and be proactive with you!
• Remember you are more than your disease.  Spend the time needed to research and seek medical treatment, but don't let it define you.  Continue your hobbies, relationships, and activities as you can.
• You will have good days and bad days.  Learning to live within those parameters is one of the hardest things for me.  Accept what you cannot change.  
• If your physical limitations have required you to withdraw, try to keep connected with friends and family.  Use the internet, phones, and texting if that's all you can do.  Don't withdraw completely.
• Join a support group.  (But be aware of the 'woe is me' and the one credit short of a PhD members)  :)
• Open up!  People don't know how to help most of the time unless you tell them.  Explain what helps and what doesn't.  
• Pray!  Studies show that those with faith based views tend to have less depression and deal with the long term effects of illness with more ease as a whole.
• Eat healthy.  No matter what illness you have, eating poorly can add to the side effects of your illness.
• Get rid of the unnecessary stress.  You have enough to deal with already without adding to the stress.  Weed out and prune often.
• Allow time for relationships, intimacy, and friendship.  If you are married, it doesn't mean the romance had to die with your old life.  Be creative, make new memories, and celebrate the little things.
• Create a new measuring system.  A person who is chronically ill can no longer measure success by the same standard, rewrite your algorithm.  Today might be considered amazing because you were able to spend time reading a book to your child.  If you continue to measure happiness by the old standard, you will continue to be disappointed. 
• Remember you get to be happy, too!  Just because you are sick doesn't mean you cannot enjoy life.  Allow yourself to be happy.  Buy something just for you.  Make the room where you stay most often a happy and cheerful place.
• Acceptance.  Learning to accept the cards you have been dealt is half the battle.  If you cannot fix it, make the best of it.  It's all about turning those lemons to lemonade!  
• DON'T STOP DREAMING!  Your dreams may have changed or need to be revised, but you can and should still dream.  Give yourself a new thing to strive for that has nothing to do with your health.  It doesn't even have to be a physical dream.  Just don't stop dreaming!

MAYO CLINIC visit #2

As you probably well know, we just returned from Mayo Clinic after 2 very long, grueling weeks of testings.  The purpose of the this visit was initially to find out if there was some type of link between my eldest son's new dysautonomia symptoms and my own illness.  If you know anything about Mayo Clinic, you know they send you from test to test to test all day long, every day.  This was Mayo Clinic on turbo mode with both my son and myself seeing teams of doctors and testing.

MY SON:
My son's diagnosis of POTS was confirmed pretty early on after testing, and by the end of week 1, there was nothing standing out in the blood work or otherwise to suggest there is some strange genetic autoimmune disease at this point.  He was given scripts for beta blockers and another medicine and will be treated with supportive care.  As long as he is able to continue playing tennis and his symptoms do not worsen, they believe he could outgrow this by his early to mid twenties.  He remains very active with just a few minor limitations at this point.  However, because of my illness being in the equation, they were quick to tell us they have no way of knowing what the future could/would hold.  He will be seen by a cardiologist every few months, but as long as he remains the same, and follows their recommendations, they are optimistic his condition will not worsen.  As he is a very private person, he has requested no more information be shared beyond this update.  He wants to be a normal teenager, and we are respecting his decision.  He has coveted the prayers and support of so many!

ME:
I ended up having to stay an extra week for more testing as the needle in the haystack search continued.  As usual, I continued to baffle my doctors since I still to this day do not follow the algorithm or curve for a known type of dysautonomia.  I was lucky to have a great team to work with and one doctor in particular really stood out.  When the others began the all to familiar 'there is nothing more we can do to improve your current situation', he bucked the system and went a completely different route.  He ordered some new tests that had never been done before.  When the results came back ABNORMAL, he realized there is possibly a whole new spectrum to pursue.  Let me try to make this LONG story...short!  I am not going to bore you with all the medical jargon, tedious tests and results, and all the ends and outs.  I'll give the bottom line!

Tests are revealing some new findings that are pointing the doctors in a new direction.  They will be spending the next few months formulating and coming up with BRAND NEW TESTING AT MAYO CLINIC JUST FOR ME!  Given the type of dysautonomia I have is very different from most types they see (not the worst, of course, but very different and in a class of its own), they are going to research new ways to study what is happening inside my body to not allow me to stand or have my legs down.  It still blows my mind that Mayo Clinic is going to formulate new tests for ME.  My momma always told me I was unique!  I will return to Mayo Clinic in 3-4 months, and then again after that.

GOOD NEWS:  They confirmed what the doctors at Vanderbilt had told us!  I am not in failure and my body, while very broken, is thriving and will continue to thrive.  I have made some big improvements since last January and have gotten stronger.  My heart has gotten stronger and my blood pressures have become more stable and less erratic.  My tests show I have made some modest improvements.  Doctors feel there is a chance to one day be able to sit with my legs down and become a bit more mobile.

INDIFFERENT NEWS:  While they feel I have a chance at getting these legs down, I will most likely not live a 'normal' life and never make a full recovery.  (We already knew that, of course, but we didn't know I would live a long disabled life, either)  New testing revealed multiple abnormalities in multiple systems  (the significance and medical explanation is detailed and confusing, I won't go into all the ins and outs, but let's just say given my situation it will be a difficult fix)  Another significant finding (which should have been done long ago) shows some promise as to why I haven't responded to any medications.  They have a theory with some data to back it up, but no fix or even a test, as of yet.  They believe they have pinpointed at least 3 reasons why I didn't show any recovery signs and appeared to be in complete autonomic failure with such a rapid decline.  (which I am not, thank God!)  While this should be in the good news category, they told me right away:  as of right now, they have no way of fixing this problem as of yet, but will begin the research before my next visit.  The new findings are cumbersome..  A few things were a surprise to us, but nothing could possibly get us down after hearing the words 'CAUTIOUSLY OPTIMISTIC' to make some improvements after all I went through last winter.

I am doing surprisingly well after such a difficult two weeks.  I am continuing some tests locally to gather data for the neurologist to continue his research before my next visit.  I was totally prepared to hear the words I've heard so many times:  "I'm sorry, there is nothing more we can do."  Instead, I was told they would even invent new testing for me to try somehow to find a way for me to live a more productive life.  I must be very careful with my anticipation and excitement.  We've walked these halls before!  My family has to be very conscious how we approach any news, whether good or bad, because the opposite result can be very damaging mentally for us all.  We've seen improvements turn to ashes too many times, so we try to not jump to any premature conclusions.  It's important for those who surround us to do the same.  WE are grateful to all who are supporting and praying for us during the next few months.  I have several new medicines and therapies to begin, and we are looking forward to seeing where they lead me!

We plan on continuing business as usual around here.  Our emotions are continuously on a roller coaster and 'sickness' tends to be a dominant ride at our home.  As much as we try to change the conversation, it often rears its ugly head at the most inopportune times.  However, as a family, we are striving very hard to keep our eyes focused on living a full, happy, and joyful life!  Some days are not quite as joyful, but the collaborated effort is ever present.  After two full weeks of nothing but doctors, tests, medicines, and the constant focus on sickness, I personally, am trying very hard to renew my mind.  (ok, I said TRYING!)  :)

Another week......

Well, one week and constant, non-stop, back to back appointments just were not enough!  We gotta add another week.  While that is not ideal for anyone.....(aka: me)....the doctors are looking in another direction to see if they can't find something that will help my current, permanent supine position.

Doctors have made some headway with my son, and we'll finish out his tests and appointments by this Friday.  He will have to stay with me and be my wheelchair chauffeur for the week.  My husband will return next Friday for the final consultations and hope and pray they have some new kind of treatment plan (right now it's more like 50-50)

For now, we are beyond exhausted!  We are all very tired and worn out.  However, we are getting all the necessary tests DONE!

Here we go.......Mayo Clinic, again!

School has come to an end, all activities have ceased, and the official start to summer has begun.  Summer has begun without our usual sigh of relief.  We all know this means we must now come back into our reality that we so neatly tucked away during the stress and excitement of all spring had to offer.

We leave in the next few days for our trip to Mayo Clinic.  My son will undergo his first ever round of grueling, autonomic testing.  I will have to put myself through hell once again doing the same tests I've had over and over again for the ever so slight chance that something could point them in a new direction of treatment.

We haven't done much talking about the tests or what it all means.  We've kept it pretty much baseline.  We have talked about how much fun we will try to have in the evenings and on our down time.  (We rarely get to be all together away from the stress of our lives and my illness)  However, from experience, Mayo doesn't give you very much down time especially when there are 2 of you seeing teams of doctors and having quite a few tests scheduled.

We should know before we leave if they have come up with any new ideas for myself or what course of action they will take with my son's treatment.  Emotions will be running high, but if the past is my guide, we will be all focused on our schedules, the tests at hand, shopping and restaurants, and my son's birthday.  Yes, my oldest son will turn 15 while we are at Mayo Clinic.  In fact, some of his toughest tests are actually on his birthday.  He's being a real trooper about it all!  But then again, he always is!

I thank everyone who has been flooding us with encouragement during the last few weeks.  We are not overly optimistic, but we are holding on to the fact that this 'sliver' of hope exists!  We covet your thoughts and prayers during the next 10+ days!

Making a list......and checking it twice!

Making a List........and Checking it Twice!

This post is probably just as much for myself, as it is for anyone else.  I've mentioned before how difficult spring and Christmas can be for me, personally.  It's often a reminder of all the many, many limitations that surround me.  Just as I was telling someone about how difficult these last few weeks have been (emotionally), I remembered....I don't have to go down this road!  I can CHOOSE a new path.  So, I'm going to share my new path choice with you today.  Your list will probably look very different from mine, but I encourage you to make one yourself.  When your list is done, I hope you find it difficult to focus on the negative!

SEARCHING EVER SO HARD FOR MY SILVER LININGS THIS WEEK!

1)  I cannot take a walk in the beautiful sunshine, sit outside in the shade, or even be outdoors in any heat.
-But I can sit in my bed with the window wide open and watch the beauty of the full bloom trees and listen to the chirping of the birds.  I can take a dip in the pool on cooler days.  I'm not sure I realized just how gorgeous this view was 3 years ago.  The beauty of things around me is as though I've had blinders on for my entire life.  It is amazing how I'm surrounded by so many things I had taken for granted.

2)  I cannot get in the pool during the day with the kids like I used to do, plan summer activities, take my kids on fun summer outings.
-I am cherishing the moments I get to spend with the family more with each small activity.  They are all far more precious when you know they are limited and few and far between.  The pool with the whole family is far more wonderful all together.

3)  I am dying to eat out at a normal restaurant with my 'freakin' legs down!
-Ok, so I cannot come up with a happy silver lining on this one.  Frustration is putting it mildly.  Cold take out and fast food isn't cutting it all the time.  Oh, to have some flamin' hot Mi Pueblo white cheese, chicken nachos!  Well, they will be gross and mushy by the time David picks them up.  Ok, am I complaining now?  I'm gonna pick....less calories consumed?  Ok, that's a stretch!  I'm trying!

4)  I cannot help anyone clean, pick-up, look for things, organize, or do spring cleaning.
-Silver lining here might appear to be easy, but if you have to watch those you love overworked, you would be dying to jump in and help.  However, I have learned that 'perfection' isn't always perfection.  Getting to help train and teach is a gift.  Letting go of some control was something only a lightening bolt could have accomplished.  It is one of my silver linings!

5)  I miss our amazing family vacations.
-Next week, the 5 of us are leaving for a medical trip to Mayo Clinic in Rochester, MN.  While it's going to be a rough, difficult week for my oldest son and myself, we will have every evening together as a family.  I'm actually looking forward to reconnecting with everyone after a busy spring.  My precious husband won't have any evening responsibilities.  I'm excited to have them all together every night (even if we are all in one hotel room)--Yikes!

6)  I have to ride with my legs on the dash to go in the car, have my wheelchair assembled, and be pushed around by someone else.
-This one gets me a lot.  There is a 'blog post' all about this whole loss of independence thing coming in the future!  I won't say there is a good angle to this one, but I have come to grips with some of it.  It is, what it is.  However, when I do make the effort to go out, but children are elated.  They all scramble to come along, be apart, and wrestle over who gets to push 'mom'.  Can't you see how that can be a silver lining?  My teenagers scramble to come to Target with their mom?  My heart is blessed in these moments.

7)  I'm homebound almost 24-7......
-After a few weeks, that got old real fast!  I long and miss the shopping, the movies, restaurants, the friends, the errands, the concerts, church, kids' events, date night, and more shopping!  All of those things are missed greatly on a daily basis, no denying that!  I will always be saddened that I cannot participate in normal, human activities.  I'd be lying if I said otherwise.  But can you imagine a life where none of those things existed?  What more could you accomplish, be, become, and realize?  I've been forced to stop!  And I chose to stop and smell the roses!  I can see what matters and what doesn't.  I've been given a gift, one that very few will ever be given in their lives.  I get the chance to see more clearly without life's overwhelming distractions.  It's a pretty good silver lining!

8)  I can longer cook
-This one 'eats' at me all the time...pun intended.  I was a great cook, if I do say so myself.  We have some scary family pictures to prove it. :)  I miss this part of my life.  I miss the role I played in our family.  But I didn't quite realize just how much I was appreciated in this area, until it was gone.  My boys, especially, have lifted me up in a way they may not have if my ability to cook had never been taken away.  They know what they have lost, too, and they have shared it with me.

9)  I'm bored out of my mind!
-Imagine having to keep your legs elevated and your heart at knee level all day-every day!  Now, imagine how many activities you can achieve in that position.  Go!  Yeah, not many!  I've learned you cannot fold laundry, wrap a present, or do any exercise.  I'm very limited in what I can do from this angle.  It gets very boring!  So, what did I do?  I decided to homeschool my youngest daughter.  Turns out, you can do that from a reclining position, and do it well.  No, we don't have any cool field trips and arts and crafts are quite hilarious, but I can pour so much into her little life.  This has been rewarding for us both in ways that I cannot describe.  Now, to come up with something for my difficult, sickly afternoons? Hmmmmmmm

***10)  I feel sick, pain, or dizzy every single day of my life with no break.
-Bet you think I can not think of a silver lining for this one?  You're right, it's tough to do.  But after 3 years of being sick, don't you think I would have lost my mind by this point if I had not?  There is never anything good about sickness and pain.  I have an usual type of illness, where I feel physically ill every single day without fail.  What about the 'good' moments?  I am always very excited when there is a break in pain or discomfort of any kind.  But it's much more than that.  It's almost like a chance to be the very best Melanie I can be in the face of constant, unrelenting trials.  Does this sound like a fake cliche?  What choice do I have?  I could say this is too much for any one person to bare, curse God, and roll over and die.  Or, I can pull myself up from the ground, put on my big-girl pants, and try with every fibre of my being to be the best sick girl that ever walked this earth.  I fail...yes, at times.....but failure isn't a long term option or goal.  I will get through the moments of pain and take full advantage of the wonderful moments.  I will live each moment as if it were my last.  And that my friends, has brought me JOY in a life filled with pain.

So, how is your list coming?  Is there a silver lining waiting in the lurks of your current trial?



**WANT TO READ MORE?  JUST CLICK ON THE LEFT SIDE UNDER 'ARCHIVE' TO SEE PAST POSTS AND UPDATES.
-CAREGIVERS
-UPDATES ON MY SON
-CHOOSING JOY and more*******

Who is caring for the caregivers?

My little disclaimer:  I write this from zero caregiver experience.  However, I happen to be married to one of the most incredible, hardest working caregivers that I have ever met.  I write this blog for him, much from our own personal experience!  He is the unsung hero in all of this!  He is the one who is often forgotten in the shuffle, yet bares the biggest responsibility.  Like so many caregivers, he is the knight in shining armor behind the scenes!

Who is Caring for the Caregivers?

This particular subject is very dear to my heart.  I am married to my very best friend, who without questions asked, bares his cross daily to be my caregiver while still caring for our 3 children.  I've had to watch my illness affect the ones I love.  I have had to watch my husband, while still making a living, bare the burden of running our home and family as all the responsibilities fall completely on his shoulders.  I've seen him cry; I've seen him be angry; I've seen him become scared; I've seen him be overwhelmed; I've seen him sacrifice without complaint; I've seen him bare it all; and I've seen him work until there was nothing left to give.

Caregivers are as different as the flowers in the fields.  Caregivers are the ones providing care for the sick, elderly, terminal, or chronically ill.  A caregiver can be an adult child caring for an aging parent who is losing their independence, or could be a spouse with grown children who is dealing with a sick or chronically ill husband or wife, or maybe a parent who has a child with an illness or disease.  One of the most difficult caregiving roles is a spouse who must become a caregiver to their spouse while still having young children to care for, as well.  All of these are often the unsung heroes who must toil and labor with very little relief of stress. (I've inclosed some caregivers tips at the bottom of the blog).

Just 3 years ago, I ran the home from top to bottom.  I was in charge of all of the many, many tasks of running a household.  With 3 young kids, this was no small feat in itself.  It was a very stressful, yet rewarding, full-time job.  There were groceries, parties, shopping, cooking, planning, carpooling, school projects, cleaning, organizing, deadlines, sports, trips, scheduling, doctor appointments, gardening, baking, errands, homework, and soooooo much more!  You know that little list is putting it mildly!  But today, because of the gravity of my illness, all of this no longer falls on ME.  It must fall on an already overwhelmed spouse.  I've mentioned before that I'm married to a doctor whose practice depends on him every day.  You cannot just cancel a clinic full of patients because your child needs to see a doctor that day.  However, what do you do when you are the caregiver of not only 3 children, but now also, a chronically ill spouse?

I've watched the toll it's taken on my husband, personally.  It's been difficult to watch.  One of the hardest things is knowing that no matter how bad it gets for him, there is still nothing I can do to jump in and relieve his stress, as I could have done years ago.  I've had to observe from my bed as every task falls on his shoulders and becomes his ultimate responsibility.  Most women out there would attest to the fact that men were not designed to run the house.  Can I get an 'Amen'?  Not only were they not designed that way naturally, they often have no desire to do so!   My precious husband has had to do more than his fair share of trying to take on this new role and all of it's 'unglorious' responsibilities.  While he doesn't have to physically scrub the bathrooms because we have someone to do that, every single task falls to him day in and day out!  He cannot depend on me to take over much because of the unpredictability of my illness.  I can be folding laundry one day, and be lying in the bed not able to move the next.  It's all on him all the time.  He must come home from work every evening and jump into multiple roles plus caregiving.  Of course, David has had the benefit of temporary help from out of town family and friends, rides during the day for the kids from his parents, some meals graciously provided during my long hospital stays, and some much needed vacations to help keep him sane. We've worked together as a family, teaching our children along the way to help and participate in our family unit, and tried to make the best of a very, difficult situation.

Having young kids at home has brought the term 'caregiver' to a whole new level.  My husband must literally do it all 24/7 or find a way for things to be done.  He is always on call by himself:  if a child needs a ride, school projects, sick kids, grocery runs, all errands, every project, cleaning up after meals, clothes and shoe shopping, returns, repairs, birthday parties, gifts, holidays, entertaining, carpooling, sporting events, school functions, all last minute pick ups from the store, yard work, church, picking up around the house, putting the kids to bed, making sure things are picked up at night, outside jobs, car maintenance, weekend meals, nightmares, boo-boos, extra-curricular activities, and the list goes on and on and on and on........   And in addition, he must also care for his sick wife which can include:  middle of the night hospital runs, weeks on end hospital stays, doctor's visits, out of town trips to medical centers, administering injections, wheelchair care and maintenance and assembly, insurance hassles, picking up medicines, bi-weekly blood draws, (at some point-in home IV therapy), picking me off the floor, caring for me when I'm too sick to walk, knowing when I'm going to pass out or not, protecting me from falls, getting me nursing care, being available 24/7 for one of the dreaded phone calls, checking my vitals, pushing me in my wheelchair, making travel arrangements, getting up in the middle of the night with me if I'm sick, making sure my social needs are being met, fitting in time to be a husband-wife, reading things to me, making sure I have the food available for when I'm too sick to get it myself, serving me in bed, cleaning up for me, putting away my things that I cannot, teaching the children how to care for me when I'm unconscious and how to get me to the bed safely, taking me out for some fresh air, helping me get in and out of the pool, buying safety items for the home and shower, holding my hair when I'm getting sick, holding my hand when the pain is more than I can bare, being my voice to the doctors when I cannot speak......and many other things that are too personal to share.  And let me just add.....this is all in addition to an extremely demanding job, medical practice, and continuing medical education, which was enough all by itself.

Putting the physical stress aside, there is another huge component.  The mental stress of the caregiver.  I heard over and over again from other caregivers how the guilt literally becomes a driving force of over working.  There is an element of guilt that goes along with being a caregiver.  You watch your spouse, your child, or your sibling suffer and often times suffer greatly.  You cannot put yourself in their shoes and feel you have no right to complain.  However, in that process, the caregiver neglects to restore and renew themselves.  Who is feeding back into them? There is something overwhelming with being responsible for everyone all the time. It's being a CEO like no other, and they never, ever get a mental break.  There can be fear and sadness as you watch your counterpart suffer or deteriorate.  You feel helpless and powerless because you cannot take away the physical pain.  It can weigh heavy on anyone's soul.  When one realizes they cannot be everything to everyone all the time, a sense of failure could set in.  The caregiver could now be faced with feelings of: guilt, failure, stress, sadness, helplessness, and intense pressure.

The lists break my heart.  It's tiring to read it, write it, but dear God, what's it like to LIVE IT?  I would like to say I could put myself in his shoes, but I cannot.  I've only seen it from my end.  I've imagined what it would be like to have a spouse who you have to watch suffer, loose abilities, cry in pain, and wither away in front of you.  But I cannot imagine the immense STRESS that must go along with living the life as a caregiver in this capacity.  So, I ask, who is caring for our caregivers?

As I became sick, I was surrounded by several individuals who took time out of their busy lives to minister to me.  I had lost so much, but was continually being reminded that I was not forgotten.  I have continued to receive cards from people all over this country.  To this day, I get blessed with each scripture, word of encouragement, or funny little note that comes in the mail.  I even had a dear, sweet lady (whom I've never, even met) send my daughter and I a recorded book because she had heard I had trouble reading aloud.  The emails, texts, letters, surprise visit from classmates, gifts, boxes and baskets, dinners, and more have all been FOOD FOR MY HEART, SOUL, AND MIND!  In fact, sometimes, it was the thing that pushed me through yet another tough week.

But, I became worried at one point, that while I'm being lifted up.......my husband was barely holding on!  His stress, pressure, responsibility were all draining him, and his cup wasn't being re-filled.  I remember reaching out to a few men to try to help support David in the beginning, as his world, too, had crumbled down around him.  After all, it was his dreams, his life, his wife, and his world that also got shaken and turned upside down.  It got me thinking.......as a society......are we forgetting about a whole group of people....the CAREGIVERS!

As the baby boomers continue to age, as illnesses continues to rise, and as people become sicker....I am sure the number of caregivers will also rise!  So, what can we do for this group of unsung heroes?  I imagine you probably know of a caregiver of some type right now, already.  It could be a temporary situation or a more permanent one.  Either way, I want to encourage you the next time you feel led to bless someone, seek out a caregiver, as well.  I can bet they would be relieved and blessed!  I recently read that more than 60% of spousal caregivers due so with zero outside help or support.

Here are some practical ways and ideas to care for a caregiver!  (with my own little take on it, of course)  Some little acts of kindness take 5 minutes to make a difference in someone's life.

-Find out if they are involved in a support group, and if not, help them locate one if they are interested.
-Bring a meal for the family (this has always been the biggest blessing to my caregiver who cannot cook)  If you can't cook, send them a take out meal or a gift card.  It's one less thing they have to worry about.
-Send them for a day out-offer to watch the kids or the sick family member.  Don't have a full day, just let them take a walk by themselves and clear their mind, or go to the movies, or even to a store alone.
-Let them have a day 'in', I don't think my husband has been alone at home for over 2 years.
-Invite them out for a meal.  This is also a great time to talk.  They probably haven't done much of that without the stress of caregiving or cleaning up.
-Be a listening ear.  Most people won't call (especially men) and say that they need to vent, talk, or cry.  Be the listening ear for a few hours.
-Take a task off their hands for a day or a week.  Find out what is their least favorite 'new' responsibility and try to give them a break from it. No, I'm not talking about bathing anyway!  :)  For my husband, it was the grocery shopping that became his least favorite 'new' job.  Any gesture can go a long way!
-Send the caregiver a note or a card letting them know they are also not forgotten.
-If the caregiver has a sick spouse, try to offer to be their other 'person' at a function or church.  See them sitting alone, have them join you.  Having a homebound spouse can be very isolating for them, as well.
-Send them a stress reliever gift basket or gift.
-Give the caregiver a call and let them know you are thinking of them today.
-If you are out running errands anyway, find out what errand you could run for the caregiver to give them one less thing they have to worry about.
-Can be as simple as baking their favorite goody, or taking them a note, or even just a hug on a difficult day!
-Find out a way you can be a blessing.  Ask what would help them out.  Or, just do it, you probably have a good idea.  Something as easy as cutting the grass could give the caregiver a much needed nap!
-Be a friend.  Caregiving is a full time job.  Just as I had to give up most of my friendships because I'm a 'shut-in', my husband had to do the same.
-Don't assume just because they don't ask, they don't need help.  Chances are they need lots of help!
-Be encouraging.
-Send them a book or a magazine to read and unwind.
-Caregivers never put their needs first.  Find out what they may need, personally.  I've read that many caregivers just want a good night sleep.  That isn't the case in our house, but is especially for those caring for an elderly parent.
-Give practical help!  Some of the best things have been the simplest.  Meals, cleaning, driving, picking up dry cleaning, shopping, etc.
-Been in their shoes?  Share some life experiences that helped you get through the most challenging times.
-LISTEN...oh, I think I said that one before....be a friend and just listen!  Their world is turned upside down, and they are pouring everything they have into others all the time.
-I'm sure there are tons more that can minister to our caregivers, be creative, be proactive, be involved, and make a difference in someone's life today!

If you have more, please COMMENT and add to this post.  I'd love to hear your ideas and thoughts on this subject.

I tried to give a small snap-shot into our unique situation on a typical week.  However, there are caregivers with many different dynamics, with over 65 million caregivers in our country right now, and that number rising each year.  The majority of caregivers do it alone with no outside help.  While this is a topic very dear to my own heart, personally, I tried to bring a small awareness to this amazing group of people who could quite possibly use some encouragement today!

Another shot at JOY!

Things have been very busy around here.  This is the time of year were school comes to an end, final exams, lots of plays and concerts, and all the end of school year activities.  If you have school children, I'm sure your month sounds a lot like ours does.  My calendar is completely filled.  We are pretty good about not over committing our kids...one activity each!  However, May seems to bombard us every year with an over load.  I'm not sure who is more ready for summer break after this month?

However, this is also one of my toughest mental times of the year besides Christmas time, of course!  It's always a constant reminder of all I cannot do, all I cannot participate in, all I cannot help with, and all my many limitations.  When the children need me, I can only help from my sofa or bed.  The gorgeous spring air and smells and sights just make me long to be outside in the middle of it all.  Leaving my house is literally like putting on a mini-parade!  Because I require a special chair for my legs, getting out is such an ordeal.  I get very, very frustrated trying to attend any event for the children.  Not only do I feel immense pressure to show up when I may be feeling ill, but almost every place we've attended, we find it's not wheel chair friendly (and even more so with my monstrosity of a wheel chair).  I long to drive, to be independent, and to give my children the rides they need.  I sat on the floor this week to work on something...in 2 minutes flat I was so sick, I had to be helped to my bed to recuperate for a good hour or 2.  I just wanted to HELP!  Yes, spring time is a difficult mental time for me!

Being anxious or frustrated isn't going to change my circumstances.  I cannot spend precious hours pouting over my limitations.  The thoughts do try to creep in....especially when I see the stress on the family or my precious husband who bears the brunt of it all.  Here comes in that daily renewing of my mind routine, again! I'm surrounded this month by all the 'cant's.  Throwing something across the room helped my immediate anger, but didn't solve my internal turmoil.  I'm pretty sure throwing something, pouting, worrying, or being anxious never solved anyone's problems........  I wish I could say I had some profound revelation to put my mind at ease, but that didn't happen.  What I did CHOOSE to do...ok, what I am CHOOSING to do today is not let this consume my thought life!  I will not pout about it, spend time getting angrier, or even play the ever infamous 'what if' game!  I'm going to remind myself and my family that these are our cards we are dealt with.....we can make the best of it....or we can fold!  But, no one is folding today.  Life isn't fair!  I have to remind my children that all the time.  Mom can't do XYZ.....you have to put in more effort in area XYZ....we have to pull together and work with what we have.  Life is not fair....but come one, we were never promised fair, anyway!

So, for spring, I've had my mini pity party!  But I didn't change one single thing...except maybe my attitude.  I've decided AGAIN that I'm choosing to work with what I have; I'm choosing mental health; and I'm choosing JOY!

Good days and not so good days!

Since February, I've been able to bounce back to my 'normal'.  After the worst 8-12 weeks of my life, I can now say things are smoother sailing.  Of course, there is no rhyme or reason as to why I have perked back up a bit or why I became so sick last Dec., and if history is my guide, it's only a matter of time before the bottom falls out again.  So, I am being careful not to get tooooo comfortable.  (Easier said than done)

So, what does my NORMAL look like?  When I say that I'm having a good day vs a bad day, what exactly does all that entail?  Here is a little peek into my 'not so normal-norm'.



GOOD DAY vs BAG DAY SNAP SHOT:

-GOOD:  Wake up and take my morning handful of pills as soon as my feet hit the floor.
-BAD:  Same scenario, just might have to add a few extra to the pile.

-GOOD:  I can have anywhere from 3-5 minutes to make a child's breakfast, get me some coffee that my husband always has so lovingly prepared, and find my chair before I begin to feel ill.
-BAD:  That means the kids are having cereal today, and I will be waiting to eat when it's safe to move about.

-GOOD:  I usually 'reset' in my chair for a bit, then I might try to put the breakfast dishes in the dishwasher if it's a particularly GREAT day.  (That would mean no dizziness or extreme tachycardia)  I try to find something I can eat in less than 3 minutes.  Yeah, that often doesn't end up with a particularly great breakfast.
-BAD:  I still try to sit up and let my medicine kick in.  This might mean taking a few extra pills to get through the 'battle'.  It could be anything from a higher heart rate, dizziness, nausea, or the worst of all:  the feeling I'm being held over the side of bed.  Talking is usually at bare minimum.  How I wake up usually lets me know how the course of the day will go.  But as I've learned, things can look great and turn sour at any second with zero warning.

-GOOD:  I usually need a good 30-45 minutes in my chair to allow the medicine to take effect.  That means no shower for at least an hour after I wake up, sometimes it can take several hours to know I can do that safely.  This is a good time to check emails, peak on FB, and plan the day.
-BAD:  Showers can evoke all kinds of symptoms.  And just because I can use my shower chair, doesn't mean I can do the after shower routine safely.  There have been days I needed 1-2 hours to recuperate after a shower just to stand up again or not feel so sick.

-GOOD:  I try to throw in a load of laundry if one of the kids have brought me their laundry.  I've become a laundry whizz!  This is my LAST remaining 'mom job' that I've been able to hang on to during good weeks.  I have grown to love this task, as it's still my simple way of saying:  "I love you".
-BAD:  No laundry today, or if I try to do it, I can often 'pay' for it by getting sick for an hours on end.  What is usually a good 3 minutes, can sometimes be actually only 30-45 seconds before the room goes dark.  This is not a good thing to happen in a laundry room (from experience!).

-On a school day, my daughter and I move the books to the sofa and family room to begin our homeschool day.  We usually begin around 8:15.  JUST 4 MONTHS AGO, I HAD BEEN CONFINED TO MY BED 23 HOURS A DAY for over a YEAR........SO THIS WOULD NOT HAVE EVEN BEEN A VIABLE OPTION......LOOK HOW JUST A MINOR ADJUSTMENT HAS GIVEN ME ONE OF THE BEST GIFTS I'VE EVER RECEIVED.  It's the gift of laying up 'non-material' treasures and investing in life long benefits!!!!!

-I'm able to keep my legs up and teach her on the sofa.  She has a little desk that she pulls up right beside me.  We've gotten VERY creative.  We have been using a mini white board, lots of props, flashcards, and games.  I usually teach her till about 11-12:00.

-GOOD:  We race for lunch time.  My gal likes to make her own lunch, which is such a blessing, cause I wouldn't have enough stand time to do her lunch and mine.  You'd be amazed at the lunches I've come up with that only take 3 minutes to prepare.  It's not good for me to sit and stand, sit and stand, so I try to go as fast as I can to do it all at once, safely!  I am a picky eater (with lots of food intolerances) so I have struggled in this area, but am doing better now.
-BAD:  Well, this has become an issue for sure.  I've learned to have food on hand that can be grabbed quickly.  As someone who is mostly immobile, this can cause weight to become an issue.  I have to eat in a reclined position, so as long as I'm not nauseous, I can usually eat just fine.

GOOD:  By 1:00, I feel like I've run a marathon.  I haven't, of course, but my body revolts.  Talking is very difficult for me and is the #1 thing to wear me out while reclining or seated.  Taking silence breaks in the afternoon are imperative.  My daughter usually works on crafts, h.w., plays, or goes outside during my rest time, as we have a NO tv during school week policy. (Yes, the housekeeper is here by this time and helping to watch the princess)
BAD:  I'm usually down for the count if this is a bad day.  I usually just lie there with the noise of the tv or the computer.  If my eyes ache, which they often do, I will stare out the window till it passes.  I hate not being able to be up at all when the boys arrive home from school.  They are used to coming right home and heading into my bedroom.  It's often a special time for us, but if I'm not feeling well, they share about their day while I listen.

GOOD:  If I feel strong enough, I try to do the finishing touches to the dinner.  I cannot cook anymore, but I can serve the plates, put a few things on the table, and maybe even make some guacamole (all in complete silence, of course.  I cannot talk and stand at the same time anymore).   I try to have the 'seasoning' of the meal saved for me, since we like very strong flavored foods (authentic Mexican is on the menu 3 out of 6 nights a week).  The days that I am able to do this, it lifts my spirit like nothing I could possibly explain.  This could quite possibly be the highlight of my day!  It also means, I get to eat with the family.  (I have to sit in a big chair with a foot rest that doesn't fit up to the table.  It means all meals are eaten over my lap like at a picnic 24/7.  While I've refined this into an art form, some meals can be quite tricky).  Can u imagine how things would go at a restaurant?  Not pretty!
BAD:  This means dinner in the bed alone for me.  This was the norm for me for about a year.  I rarely felt well enough to hold up my head at the dinner table.  Now, I would say it's more like just 1-2 times per week.  It gets a little lonely, but if I'm sick enough, I really don't want company or to even talk.  My family is used to it, but I do long and miss those evening chats around the dinner table.  We always eat dinner as a family, so sometimes I listen from my main floor bedroom to the 'dinner chat' which lifts my spirits.

GOOD:  Eating is often a trigger for me to feel worse.  Normally, your 'gut' requires more blood flow to digest food.  If you have poor blood flow anyway, digestion can take away the blood you need to sit up, talk, or to think clearly.  After meals for me means...go lie down!  Sometimes I just dream of how wonderful it would be to just hop up, grab my keys, and go shopping all by myself!  I miss so many things, but my independence is probably the hardest!
BAD:  Food can be a nasty trigger for almost any of my symptoms.  However, if I'm already ill, I'm probably lying down anyway.  Sometimes food can also comfort someone who feels awful.  This has got to be something we watch for...not letting food comfort us when we ache.  Sometimes chocolate is like the best medicine!  :)

GOOD:  Evenings:  My evenings are always spent in the bed after dinner.  Rare is the occasion I feel well enough to be on the sofa after a long day.  My husband and I use this time to catch up on each other's day.  Sometimes this is a great family time.  Since we don't do evening tv, you would be AMAZED at the quality time you can have with your family gathered around the bed.  We've had some of the best laughs, deep conversations, and teaching moments.  During school nights, the kids often are busy with h.w. and extracurricular activities, so we don't at much time together as we would like.  Every blue moon, I've been known to want a Target run.  We've done this about half a dozen times this year.  It's rare, but I love it!
BAD:  Evenings:  After dinner time until bedtime, I'm already resting.  However, if it's a particularly difficult day or night, I am lying there hoping and praying this won't end in another hospital trip.  Depending on the symptoms, my husband usually stays close by helping to nurse me and attend to my needs.  This can make for a long evening for us both.  For over a year, this was every night!  Now, we are blessed to say it's not as often per week.  My husband has to come home from work and be the 'all hands on deck' all alone.  He's nursing me, taking care of 3 busy kids, and doing his evening work.  It can get tricky!

GOOD:  Sleep:  A good night sleep for me is rare beyond rare!  Ever since I became a mom, I haven't sleep great (like most moms out there)!!!!!  However, due to my blood flow, I can never lie flat and my heart rate and blood pressure often respond to positions.  It can be a long painful night.  I do not take sleep aids, so I have resolved to get to bed early to get enough sleep.  I'm satisfied if I only woke up a 6-12 times that night.
BAD:  I've had some difficult nights.  My heart pills tend to wear off while I'm sleeping.  This is never a fun event.  Some nights are worse than others.  My blood flow also makes me dizzy and lightheaded while sleeping, and that will make getting up at all more difficult and dangerous.  I have quite a few things that seem to get worse at night and learning to deal with them has been tricky.

So, there is just a little snapshot into what a 'normal' day can look like in my world!

WHEN ALL HELL BREAKS LOOSE.............

It's only with a very guarded and heavy heart that I publicly share the following information.  After a long year of denial, concealing, and waiting, we feel it's time to share one of the most difficult things I may ever type up on my laptop.

A little over a year and half ago my husband and I noticed our oldest son having some similar dysautonomia symptoms.  At the first sign, we took him to a doctor who basically told us to keep an eye on it, but it's probably nothing.  A year ago, we knew it WAS something.........  Our oldest has always been our 'healthiest' child by far.  Besides some dizziness he's had from early on, I can count on one hand the number of times he's even ever been sick.  So, it was alarming and unusual to see any changes in him at all.

For his privacy (which he gave me permission to share his illness), I will not divulge all of his symptoms, changes, and pain.  I will leave it very basic.  We have known for about a year now that he was beginning to get sick.  We have been monitoring him quite closely, yet completely in denial that this could be happening after all we've been through as a family.  What are the chances?  We were told this is not hereditary!  But month after month, we saw that our son was in the beginning of true dysautonomia.

With a very heavy heart, our son was diagnosed by my cardiologist in Toledo as having POTS-Postural Orthostatic Tachycardia Syndrome in March.  This is the original diagnosis I received years ago before mine developed into a more serious form dysautonomia.  My son's form also appears to be a direct result of severe venus pooling.  (The type that is almost impossible to treat)

Bottom line:  We don't know how or why he got this.  We don't know the link between his illness and mine.  We do NOT know if his will spiral or stay stagnant or if there will be any long term repercussions.  The doctor is concerned yet baffled.  Doctors are beginning to second guess the whole etiology of my illness, as well.  We are told this is 1 in a million cases....doesn't get much stranger than this!

Our case was sent to Mayo Clinic in MN and in less than 2 hours we were told they want to see us both as soon as possible. (I was diagnosed at Mayo in early 2012)   My son and I will be going to Mayo Clinic for 7-10 days the second school lets out to undergo new rounds of grueling testing, meet with multiple teams of doctors in multiple specialties, and begin the journey to find the missing link between our illness'.

The news to our family has been more than devastating.  David and I have had a PIT in our stomachs for months now.  We chose to cautiously keep this quiet until we had all the information and to respect the privacy of our teenage son.  We have been hit with yet another wrecking ball.  As I've said before......never, ever assume:  "It can't get any worse."  Because the second you think it won't get worse, ALL HELL CAN BREAK LOOSE!

However, if we look for that silver lining....which is always there.......this does give us some more hope that no stone will be left unturned now that the doctors will begin to second guess my prognosis, diagnosis, and etiology.   Since my son is still in the beginning stages, they may be able to tie the links between the beginning and the more advanced.  We are cautiously hopeful that new information will come to light.  We are also happy to have a diagnosis quickly for our son so that we know how to keep him mobile for much longer than I was.

We ask for your thoughts and prayers for our family's strength, joy, and endurance.  You'd be very surprised to see how calm and collected our son has been.  He's taking it in stride even with some new limitations he's had to endure.  I'm very proud of who he is as a young man, and especially proud at how well he's taken the news.  He's an unusually private person, but he did allow me to share his personal information and ask for prayer during the next few months.  He only ask that no one talk with him about it, or ask him any questions.  We are all respecting his rights and privacy.

I've promised not to make this a religious blog or offend any readers, but I cannot help but to share this one thing as I know I would be completely lost at this point:  It is ONLY the joy of my Lord that has given me the strength to endure.  While my body is weak, my heart has not grown weary because the strength doesn't and hasn't ever come from myself but from Him who my strength and help comes from daily!

Living within my parameters---isn't always that easy!

If you have followed any of my blogs, you know that my limitations are often overwhelming.

(Brief summary for the 'newbies' to the blog:  3 years ago I suddenly became ill.  I lived a very active life, was in the best shape of my adult life, and was living my 'dream'.  After a steady decline of about a year, I was left completely disabled.  My heart could no longer keep up with the demands to keep my body postural.  I am now forced to remain in a reclined position at all times no matter if I'm in the car, my wheelchair, or on the sofa.  I have to keep my legs and heart at the same level to prevent passing out.  I can walk around the house anywhere from 90 seconds to 3-8 minutes depending on any given day.  I cannot drive, attend most functions, fly, cook, or any activity that requires you to sit in a normal position.  I recently took my obtrusive, reclining wheelchair to a restaurant for the first time in over 1.5 yrs.  Getting dressed and groomed, showering, cutting an apple, throwing in a load of laundry, finding something in the fridge,  or helping a child get breakfast together are all BLESSINGS for me each day if I'm granted the ability to stand long enough to complete them alone!)

To say that I have some limitations in life would be an understatement.  My limitations are great...and some days they can overtake me.  I long for the days that I could get in the car and have freedom and independence.  I loathe the moments I have to ask for help, depend on help, or need help of others for my own basic needs.  I struggle immensely with being at the mercy of others to provide rides for myself or for my children.  I guess unless you have been in a similar position, you couldn't quite fathom how intensely difficult it is for a grown woman to have to depend on so many around her for the simplest of tasks.  The responsibilities of being a young wife and mother have not allowed me the fluency in transition of becoming disabled as the elderly population may have.

Most days I embrace my life as it is.  I work within my perimeters, I persevere within my limits, and I endure the hand I was dealt.  But not everyday is a 'bed of roses'.  There can be days when its just not enough.  I have recently been flooded with the vastness of my limitations due to an ever-present longing to be engaged and involved more and more.  To use the word 'frustration' would only minimize how I have been feeling lately.  The spring smells, sights, and sounds are fuel for the soul, yet produce a yearning inside of me to be active.  The words:  "if only; just five more minutes; if I could just; what about this one task" and so many more seem to be my new catch phrases.

I employed my family with the task of cleaning out snow accessories in exchange of fresh spring jackets, umbrellas, and rain gear.  It was obvious within moments the family was lost and were not going to get an advance on their allowance :)  I sat in my cursed, reclined position to begin the efficiency directing.  In just a few short minutes, the room began to grow blurry, my words became slurred, and my heart has pounding.  I safely made it to the floor in time (as I do most days).   I could share story after story just like this one.  There are the days that I just have to spend that extra 45 seconds to find my own item in the pantry, or the times I try to talk when I cannot breath well, or about the days I have to put that load of laundry from the washer to the dryer, the extra minute I spent to brush out my hair or floss my teeth, or possibly just sitting with my legs down just a touch too low, or just today when I wanted to put the jelly on my son's toast.  And then....I PAY dearly for those extra moments.  It could be anything from a hard fall to the floor in a loss of consciousness, 2 hours to regain my breathing and dizziness, or even such pain that I just have to lie in the bed for hours to even be able to lift my head off of the pillow.  And it was all just to have an extra minute or 2 of 'life'.  Yes, I can say the word 'frustrated' doesn't quite crack that shell.

So where does the silver lining or the choosing joy fit into this?  Some days, it just doesn't fit!  Some days are just going to be a disappointment.  However, recently, I've had to remind myself over and over and over again that there are still many things I can do!  It wasn't just 4 months ago that I was fighting for my very life, and now I've been given hope that I could be around for quite awhile!  When I want to throw the vase against the wall in frustration, I have to remember that I am still beyond BLESSED as a woman who got to learn to live life from the bed.   Life was never promised to be a bed of roses.  When I cry out to anyone who will listen:  "I just want to live a normal life!", am I forgetting all the things I've been given and learned in this journey?  I can tell you that honestly, 9 out of 10 times, I am not interested in living this type of life just for the lessons learned.  But I have no doubt there will be a joy that comes in the morning, because I chose to not give in or give up when the limitations overtook me!  I think of my middle son who has worked very hard on some of his musical hobbies in the last 2 years that has caused him to have to sit out or give up some other pleasures in life to keep his eye on the prize.  His joy is going to come when he reaps his reward in the end.  He will find JOY in the fact that he didn't give up when it got tough or when a better offer came along.  While he has a choice, there is still going to be a heavy sense of satisfaction and joy that he stayed the course.  

I'm a FIRM believer in renewing my mind.  I have tried, tested, and found that JOY IS A CHOICE.  I'm not a super hero.....I don't have some magic potion of joy....and I certainly don't have all the answers.  What I do know, is that I have a choice each and every morning on how I will focus my thoughts and what I will choose to meditate on today.  If I meditated on my limitations (just by you only hearing a small sample of them) I would literally fall apart.  I wouldn't be able to get out of the bed each day.  The mind is a powerful thing.  We were given the ability to control our thoughts and our emotions.  I've learned so much about this in the last year and half.  And I know, without a doubt, that even in the face of IMMENSE LIMITATION, joy is still a choice!  So, while I'm not able to do very much today or anyway, I want, need, and will CHOOSE JOY!  Are you choosing joy today, too?

QUICK note

I have lots of thoughts and want to share them soon, but have been quite busy lately with the new task of homeschooling our youngest child.  It's been so rewarding and a blessing to us both.  It does take up the majority of my 'good' moments.  I am not used to having to be mentally 'in the game', and it's taking quite a bit of time getting used to the process again.  However, I wouldn't trade one single moment or memory!  After all, I'm laying up treasures that thieves will never be able to break in and steal.  These days and weeks are priceless, and we are already reaping the benefits.

I can still easily say....I'm probably the luckiest girl in the world.....I get to see the joy and beauty in each and every morning....but now I get to share that joy with my daughter in a way I never thought POSSIBLE!!!!!!  When I screamed out:  "but I'm not done, yet!"  ......... my voice was heard!

Back to baseline!

I try to put my thoughts into words at least once a week.  However, lately, I've fallen a little behind.  I'm finally back to my previous, physical baseline.

My days can be anywhere from an unexpected 5 minutes of blessed stand time to a quick change of intense nausea and dizziness and imminent falls.  There is something very discomforting about my normal baseline.  The swings can be as unpredictable as the weather.  My plans can be changed at the drop of a hat.  I can be laughing and talking one moment, and crying in pain the very next.  Those around me are quite used to the influx of change and have learned to roll with the punches.  I, however, find it quite difficult to deal with the uncertainty of it all.  

When you are used to feeling sick 24-7....you can at the very least expect to be sick.  There is a peace about knowing what you day holds.  When you feel well for a few days or weeks, there begins to be a new kind of peace of endless possibilities.  However, when the day can change as quickly as mine does, there never seems to be 'peace' for my mind.  I have to methodically renew my mind each and every day.  I found that out again this morning.  I got up as I normally do, just to find that today wasn't going to yield the same 'stand time' as the previous few days.  I wasn't expecting the sudden change and tried to foolishly overcome it.  After conceding defeat, I immediately began to feel angry and maybe even somewhat sorry for myself.  Who was going to heat up Ellie's breakfast today?  The 2 of us made a great team, but I wanted to secretly blame someone or something.  After all, it's not really fair that I cannot perform the task of a normal person.  Aren't I somehow entitled to have my own little pity party?

Ellie and I began school this morning with a Bible verse of her choosing.  She pulled it out and asked me to read it out loud for her.....paraphrasing, of course, "GIVE THANKS in all circumstances.............".  Huh?  Really?  Yes, give thanks in all circumstances.  Ellie wondered why mommy had big alligator tears streaming down her face.  It was easy for me to answer.  "I'm just giving thanks, today, Ellie.  I needed to be reminded that I'm the luckiest Mom in the world because I'm here and able to homeschool you."  Just a month ago, I wasn't sure I would even still be here, and today I am teaching my little, precious princess the joy of giving thanks in all things.  I became overwhelmed with thanksgiving.  What many of you may not realize is that I had prayed and prayed to get the opportunity to speak 'life' into this girl's life.  We both took turns saying all the things that 'sucked' but how and why we could still be thankful in those circumstances.  It was a funny and fun exercise, but one I needed today.  

No, today isn't my favorite day.  My body does hurt and is weaker today.  But I have so much to be thankful for today and everyday.  It's hard to give thanks in every situation.  It's all about choosing that JOY every day....not just when it's convenient.

It does take some reminders.....but it turns out, I'm one of the luckiest gals in the world.  I am still living my 'dream' even if it's not quite the exact vision I had imagined it would be.  I feel overwhelmed with joy that I get this chance....from my sofa....and from my bed.....to impart academic and life wisdom into my daughter.  Just when I thought my dreams were done.....I'm still teaching and mothering.  Isn't that worth giving thanks for today? What things are you forgetting to be thankful for?  Does your current circumstance muddy your vision?  Why don't we both take a big wet cloth and clean off the windshield.  Turns out, my rainbow is still there!  I just had to look for it.

What does 'HOPE' look like to you?

For the last 2 weeks, I HAD been mentally working on a deep, heart felt piece about 'What does regret look like'.  It was a turn on a dime kind of moment for me during my last hospital stay.  However, I need to post-pone that plan for now.........because I think I have to share something a little more powerful in my life today.

What does 'hope' look like?

If you've ever read a single one of my blog posts, you know that my 'hope' is one of my driving forces each and every day.  I still wake up surprised every morning that I am sick.  I still 'fly' in my dreams at night, I still plan for my 'future', and I often talk about the chance of some brilliant mind discovering the unknown cure for my incurable disease.  I haven't cleaned out my tennis skirt drawer, given away my sewing machines, or even sold my 'dress' clothes, yet.  I guess you could call that 'hope'.  No, I'm not naive to assume that all the doctors are incorrect, and that I will magically one day walk and sit as normal being.  But if I removed all 'hope' of any type of improvement, I am pretty sure the next time I faced 'death' it would NOT be with such fervor to fight.

However, knowing what probably lies in my future....even though the doctors have all been very noncommittal to the exact process or timing, I must search for that hope each and every day without fail.  But I'm finding more and more that the hope isn't at all in the potential chance of a meaningful, healthy life.  It turns out, HOPE, for me, is finding MEANING IN MY LIFE.

I'm not ready to write the story of my 'happily ever after', because the end of story is yet to be determined.  I'm also not ready to write the story of 'dang, my life really sucks', because amidst the stormy days, I'm still seeing so many rainbows.  But I'm very, very busy writing the stories of HOPE that have brought even more meaning to my life than I ever even knew possible.  Could there even be blessing after blessing coming my way that I would have never, ever received had I not been given the misfortune that has been cast upon me to bear?

My new HOPE is finding these beautiful meanings to life!  So, what does 'HOPE' look like to you?  I always thought it had to be a cure, a healing, a chance of survival, or a magic pill.  Does your 'hope' have to be the whole kit and caboodle for it be good enough for you?  Does it have to be all or nothing for you to call it true hope?  After all, the universal accepted definition of HOPE is:  "to look forward or to feel that something desirable may happen".  While my final outcome will most likely be nothing desirable, can I not still have a sense of looking forward to something or a belief and desire that something good will still happen?  I don't believe my only HOPE has to be in the ultimate cure, walking, sitting in a chair, living pain free, having my heart function normally, driving again, enjoying my abandoned hobbies, getting to cook or sew, being a 'normal' wife and mother, going out to eat or the movies, or even having my independence back.

Let me tell you what HOPE looks like to me:

My entire graduating class got together unbeknownst to me and made me a cherished gift (a photo afghan filled with pictures).  Not only did they all chip in, send pictures, plot and plan......but 4 of the classmates made a 14 hour trip through the night and snow to hand deliver it to me as a surprise!  They showed up on my doorstep with the gift in hand.  I probably will never find the right words to express what that meant to me.  I know after a few days, I'm still trying to fight back the tears of gratitude that seems to well up every time I think of their sacrifice.  Not only did I ever imagine they would show up after 22 years at my door, but I had no idea these people cared so much.  What did that translate to me?  After I put aside the true expression of love, selflessness, and friendship:  "It was hope".  There are still so many wonderful, amazing things that are worth fighting for....some I'm learning I didn't even know were a possibility.  This is what hope looked like to me!  I got to learn a lot about my old friends that day.  I got to see a new beauty in their friendships.  I got to hope that there are even more memories to be made and even stronger relationships to forge.

My mother recently came to our house and spent 2 solid weeks waiting on David and me.  Between crip 1 and crip 2 and 3 busy, busy children she had her hands quite full.  After laundry, cooking, serving, cleaning up, and running errands, she still managed to minister to me in special way and give me a few much needed pedis.  (as a former "girly-girl" this is paramount to me).  This was not only a lot of fun but showed 'love' in a tangible way.  Would this be the classic definition of hope?  Probably not to most.  However, if keeping with Webster, hope is believing something desirable may happen.  It doesn't have to be a big miracle, it might just be the little things.  Watching my mother minister to each of my family members in a different way, gave me hope of all the special ways our bonds will grow stronger and stronger each year.

I've recently received a few surprise letters and emails from old acquaintances and from some people I've never even met.  These notes were sent to me to let me know that I had touched their lives in some way, whether through this little blog, maybe a post on FB, hearing a story, or through another friend.  Wouldn't that look a lot like HOPE?  I was told I would never fully recover and my chances at any normal life were gone.  My whole 'bucket list' was trashed and burned.  One of my biggest heart's desires has always been to give back to others.  I had dreamed of writing a book, public speaking, starting a ministry, volunteering in the community, doing more mission work one day, and a few other things.  When I cried out one day 'BUT I'M NOT DONE, YET!', I never imagined that I would still get the opportunity to give back no matter how small my role may be.  That is hope to me.  I can HOPE and PRAY that I can bless someone....somewhere.....somehow.....no matter how tiny a contribution.

Hope can come in all shapes or sizes.  Hope doesn't have to be the ONLY desired outcome that you had anticipated.  I went back to confirm that with good 'ole Webster himself.  The definition never includes the word 'ONLY'.  It's just a hope that something desirable can or will happen, or something to look forward to.  Our dreams are not crushed because the final result won't be the exact image we had imagined.  I've recently been shown in several instances by old friends, some new friends, and family that there is HOPE.......it's not the 'happily ever after' I imagined it would be, but it will be HAPPY, after all!

So, what does HOPE look like for you?  Does it have to be the fairy tale, or can it be the story you were always meant to write?