Life as I knew it...

I have been on a roller coaster ride in the last 24 hours, yet even so I have had a rather large heaping of mercy dolled out as well.  As much as I have despaired, I know that I am a much beloved sheep of the Good Shepherd.

I feel as if I escaped one prison only to find myself jailed in another mere weeks later.  It seems as if, despite the freedom hormones have given to my body, my body has been most ungrateful for the reprieve.  Or, perhaps, with one battle down, the ongoing progress of the war was inevitable...inexorable, really.  My innards.  SIGH.

Over the past few weeks, I have had increasing episodes of a strange nausea wherein I have great abdominal pain and nausea.  Any clothing, even a t-shirt, feels like a thousand pounds is resting upon my torso.  In the wee hours of the morning, I am awakened by the pain and nausea and am forced to ride it out for hours.  Hours.  Amos has not really enjoyed these battles as well, since I cannot bear to have him even touching my side at such times.  He doesn't understand why I keep pushing him away.  Poor little faithful puppy who is only trying to comfort me.

It is been a puzzle, really, trying to figure out what I ate that was so wrong.  This is especially so when I have the same thing several meals in a row and sometimes it is okay and sometimes it is not.  Well, now I know that what I suspected was actually what was happening.  I even know now why it was that the final four of my 13 sessions of scrubbing the attic floor made me inexplicably nauseous.

Actually, I now know that I was right when I thought the terrible bout of food poisoning triggered the start of the problems dysautonomia can wreak on a digestive system.  Lying in bed rather ill, I once again tried Googling dysautonomia information and came across two sites I had not previously found.  There, splashed across the screen, were all the things I have been battling, things I thought so weird and the reasons why I was experiencing them.

Truth be told, I have known from the initial diagnosis that I needed to change my eating life.  The cardiologist was so adamant about hydration and sodium and eating 6-8 meals a day.  But you cannot really work and eat that way...at least the frequency.  I simply didn't want to face it.  The sodium, yes, but I truly dislike water and eating 6-8 meals a day is a dramatic life change.

When I saw the neurologist last November, I really did not understand his utter disbelief when I answered in the negative about any digestive problems.  He repeatedly asked about them, giving examples I had forgotten until now.  Until now.  He knew what was coming and, I supposed, found it to be a gift of some sort the fainting and cold spells were my main dysautonomia issues.

I still cannot write about the information dump that occurred last night, a horrific revelation of what lies before me, especially if I continue to ignore the need for a complete attitude adjustment about changing how I eat and being far more careful about what I eat.  As in...feeding tubes.  I remain overwhelmed, even as I remain relieved to have my weird innards issues described so accurately by doctor and patient alike.

As much as I wish not to do so, here and now I am asking those who know me to help me and to hold me accountable to the changes I need to make.  The first round include: 6-8 small meals; 2 glasses of water a day; an additional glass of Gatorade a day; gluten at only one of the meals; and dairy at no more than 2 of the meals.  I have known that I can only eat breads when I have far more protein, but apparently dairy can be hard to digest as well.  That puzzles me, but still I am going to try. I will say that if I have the chance to eat out with company, I will give myself the grace to have a more regular sized meal.  However, I need BIG changes and these will make a good start.

All the things that sound weird and do not fit with tests and such are all very, very typical of a neurological disease that affects the autonomic process of digestion.  I suppose, in a way, I am quite thankful for all the fainting.  For those whose digestive system is the first primary symptom, a veritable mass of tests come their way, all with non-specific results and often mis-diagnoses (such as irritable bowel syndrome) before finally discovering they have one or more of the four classes of dysautonomia (I have POTS and NCS).  So, I am blessed, really, to already have the diagnosis and thus understand better what is happening.  Still, it is just plain crappy.

In my opinion, dysautonomia is far, far, far worse than multiple sclerosis.

I suppose a small part of me was relieved to find a few things familiar, aside from my innards battle: extremely cold extremities (including my nose) when battling a body temperature drop, brain fog, losing the ability to concentrate, and increase in fatigue.  I was also relieved to see so many who said things like seemingly one week they could do things/eat things and the next week they could not.  I was not aware, as well, just how strongly great stress can aggravate dysautonomia.  [You are probably right, Fred, about your connection between the worsening and the fear of what I have to face soon.]  Yet the bottom line, for me, is that I am absolutely overwhelmed by all that I learned last night.

Overwhelmed and wanting to stamp my foot on the ground and shout with my whole being: This isn't fair!


This morning, I was really struggling and God, in His infinite mercy, blessed me through the words and compassion of Fred, who even as an undershepherd understands how much I want to throw a fit about this. Truly, talking with him helped me take the first swallow of what I think is a great, bitter draft of fetid brew.  And, mercy overflowing, a friend here had already agreed to help me go mattress shopping today.

I had done a fair amount of research online and chose three stores to visit.  But I also suspected that, if what I had read was even marginally true, a first stop at Denver Mattress Company might result in one-stop shopping.  It did.  Seriously, if you are in need of a mattress, high-tail it over there.  If you are in Fort Wayne, ask for Daniel. During the time he spent with us, I honestly felt he desired to give me the best sleeping solution possible--not a sales pitch--no matter how long it took the right one.

Walking in, I had very firm ideas about what I did and did not want.  However, highly trained and a very good listener, Daniel steered me toward a mattress that I believe will make a profound difference in how well I sleep.  Tuesday cannot come soon enough for me!  [Since I have an appointment that might fall in the delivery window, once assigned to me, my friend volunteered to stay at my house while I am gone in case the truck comes.  What a merciful offer!]

Being able to share the experience, having someone to lie with me on mattress after mattress and talk through the differences in them, was a great blessing.  Being with someone gentle and kind was an even greater blessing.  Truly this was a much easier process with her presence.

She also introduced me to a restaurant that I am rather miffed no one has dragged me to yet: Mad Anthony's.  It was there I had a final farewell to my current way of life.  Being the ever supportive friend, my companion allowed me to order three appetizers and a sandwich to split with her: 1) Scotch eggs--these hard-boiled eggs encrusted with sausage and bread crumbs and flash fried dipped in a ranch sauce; 2) seasoned wedge fries dipped in a cucumber sauce; 3) a thick spinach and artichoke dip with tri-colored chips; and 4) the absolute most decadent sandwich I have ever had in my life--a grilled cheese sandwich that had fresh mozzarella, fresh spinach, roasted red peppers, applewood smoked bacon, and some sort of jam served on a sour dough bread.  On cooking shows, I have heard people talk about an explosion of flavors, but have never experienced such a thing until now.  Plus, Mad Anthony's has games to play at your table and serves Dr Pepper!  From now on, if someone wants to treat me, I shall drag them over there!!!!

We did bring home many left-overs, but I also ate too much.  And I forgot to take Acarbose before I ate (Boy, do I sure hope that there was enough protein to balance out the carbohydrates I consumed).   SIGH.

Last night, I learned the mechanics of why it is that I need to eat multiple small meals a day.  I suppose I wish I had restrained myself a bit more. However, today I had a true culinary feast the likes of which I have not experienced in a long, long time, and, if I am responsible, will never consume again. The true test will be if I can summon enough determination to spread my leftovers out across at least two days.  I have two helpings of eggs, two helpings of spinach and artichoke dip, and one helping of potatoes...if I move forward with the wholesale-commitment-to-small-meals vow.

The worst part of what I read was the constant refrain of how unpredictable dysautonomia digestive issues are, how life becomes as if one is constantly riding on a roller coaster.  Words cannot express how much my heart, mind, body, and soul felt crushed by learning of this...even though it is something I have been beginning to experience of late.

In so very many ways, my life has completely changed.  Just as I manage to adjust to one radical shift in direction, I am bumped and turned in an utterly different one.  My mind is screaming This is too much!  Yet even as I am felled by such a mighty blow as the stark reality this still new disease will be in my life--an ever-unfolding nightmare if I may be so bold to say--I was cushioned by the shock with the mercy and compassion given to me by Fred and my friend.  And I found what very well may be the most perfect mattress for my rather beleaguered body.

The woman who has been helping me work through things said recently that a proper diagnosis of any medical or mental problem is most beautiful to her, for it means that you then have the reasons thereof and can make a plan.  Even if it is hard, harsh diagnosis, having an answer is a great blessing.  She is right.  Though my diagnosis came nearly 18 months ago, only now have I even begun to understand what it means.  Having it, however, made my search for answers as I writhed in agony last night almost easy.  Finally finding the right search terms let me know that I am not alone in this, I am not unusual at all, and that while there is no cure or even direct treatment, there are choices--better choices--that I can begin to make.  And, being armed with the knowledge of where this very well might go, I will not be blindsided by a future that truly does appear to be rather bleak.

Fred reminded me of something this morning: Gethsemane.  Even knowing what He faced, even choosing to be born into a human body so that He might accomplish the salvation of God's beloved creation, Jesus struggled mightily with the path before Him. It struck me today that this very well might be because He was in a human body with a human mind.  Though Jesus is infinite, He chose to live for a time in the finite.  Our bodies and minds are very finite, very limited.  We cannot blithely pass through trials and tribulations as if they have no impact upon our person.  Nor can we expect to face such an agonizing experience without pausing, without struggling against the very idea of it, and without wishing somehow it might pass from us.

Oh, how I am struggling with the knowledge of what lies before me.
Oh, how I tremble at the thought of what I must endure.
Oh, how I wish this battle with my innards...and the fainting...and the cold...I must face for the rest of my life would pass.


I am Yours, Lord.  Save me!