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?



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