Which life do I want...

Today was the first time I did not beat my head against a brick wall whilst creating the PDF versions of the newsletter for Lutherans in Africa.  Sometimes, since I am certainly not a designer, I create something an less-than-efficient manner at the outset.  If it is something that is going to be repeated, such as a newsletter, creating a template of sorts is always best.  Because I am so tired, each time I just replaced the text and photos.  But the bottom of the last page, which has the contact information for the mission, was not static.  Each cut and paste would mess up the alignment of the contact text within the color bands across the page.  Hours and hours and hours were wasted fixing the alignment until the last issue, where I took the time to create a static element for the contact information on both the English and Finnish versions.  No more tripling or worse the work load of each newsletter.  The smart move would have been to create the static element initially.  The almost smart move would have been to do so on the second newsletter.  Smart.  I am not that anymore.

In less than three months, I was award disability by the Social Security Administration (SSA).  I was fully prepared for two or even three denials before gaining it.  I was not ... at all ... prepared for how brutal the application process was.  I will say that I have yet to receive the status in writing, nor was the promised initial  payment deposited into my account this past week.  Yes, I am worried.

The process is filled with paperwork, filled with exams, and filled with agony.  For me, I was completely caught off-guard by how difficult it would be for me to document the changes that have happened in my body and in my mind.  There was one I have not even yet told my primary care physician.  Because I am ashamed to be that person.

Much of my struggle has been facing that I really am no longer the person I was.  Grief is a long and winding road.

The woman with dysautonomia's whose blog I liked so much likened the condition to being on a run-away carousel.  I have long wondered why her blog ended so abruptly.  I think I know now.  Life becomes too overwhelming.  Over and over and over she determined that she would keep all the things associated with dysautonomia from affecting her life.  But it did.  It does.  Few doctors know the condition.  There is no treatment.  You search for drugs with side effects that might possibly help.  And you despair.  Because few medical people understand.  Because there is no treatment or cure.  Because you are declining physically and cognitively in a most miserable fashion.  Because no one understands.  Because you are alone.  As the condition progresses, just how alone you are is made patently clear.

The metaphor is perfect.  There are you are, riding up and down and round and round and round.  It is dizzying.  It is disorientating.  And it is impossible to hold perspective.

I was nervous about the psychological testing the SSA ordered. It turned out that of all the cognitive function testing, the SSA was only interested in memory.  The taking of the test was devastating.  From the immediate award of disability thereafter, I am fairly sure the results were at least as bad I surmised.  Question after question after question I could not answer.

There is a blankness in my mind when it comes to remembering things.  Some is still there, but much is not.  And new things do not last.  I had to put signs up to remind me to turn off the stove/oven, to close doors, to take medication, to give Amos water....  I do not remember.

I do not remember to pay my bills. I do not remember that I paid my bills.  I do not remember to check. I do not remember how to check.  The SSA association determined that I was not a fit payee.  I had to find someone who would be willing to serve as one, hire a payee, or appeal the decision.  No one I asked wanted to be a payee for me.  No one was even willing to be a part of my appeal by committing to spending an hour a month double-checking the automatic payments and seeing if there were any non-automatic bills, such as a medical bill.  No one.

I was not offended by the SSA's determination.  Though I did believe and believe still that if I had just a bit of help then I could remain in control of my finances ... at least for a while.  It is the remembering, after all, that is the worst.  Hiring someone to act as payee is really not an option.  As it is, my monthly medical expenses still outweigh the disability payment by $1,000.  So, while my living expenses will be covered, I am still in a world of financial trouble with the medical burden.  Medicare will start August 2013, but that will only reduce my burden by a fraction.  Therefore, I still will be winnowing down my meager retirement, month by month, until I can no longer afford to be me.

No matter what you might think about Medicaid and Medicare, they are not comprehensive and they certainly do not cover the chronically ill.  And there are huge, huge gaps for those not elderly, not head of household, and not a parent.  To be "young" and disabled is to be, well, someone else's problem.

In any case, I reached a compromise by placing myself beneath the supervision of a social worker, which is the same as placing myself beneath the supervision of the government.  I have no friends or family willing to help me remain independent, to help with bills or appointments or keeping the household.  That is something I had to admit, had to say out loud to so many people, as I went through the application process and as I went through the payee process and as I went through the social worker registration process.  Saying it never got easier.  For me, it got worse.

I have been in bed since Thursday, since the electrician left.  I have been in bed because I am trying to decide which is the more tolerable misery.  The digestive nightmare had reached new heights, with hours and even days of nausea, on top of the bloating, pain, vomiting, and diarrhea   The constant nausea is as bad as the migraine pain in that it is all consuming and reduces me to a huddled mass of misery.

The daily dose of erythromycin solution does help, but it conflicts with my daily doses of theophylline, which helps to lessen the fainting, near fainting, and dizziness.  In short, I can take one medication and not have as much innards misery but struggle to remain upright or I can take the other medication and walk around if it were not for the agony in my mid-section.

Right now, I am choosing the erythromycin, despite the additional problem of cardiac and blood sugar side effects.  Right now, I am choosing to live in my bed, save for trying to eat and letting Amos out.  In a sense, I am trying to choose which life do I want.  Neither is one anyone would want.

I did not remember that there was a final entry to that woman's blog.  Perhaps I did not see it because I had found the blog by an entry early one regarding migraines.  I find it interesting that what I surmised is laced throughout her last words.  I think about her a lot.  It is hard to find anyone who does understand.  It is equally hard to find someone who will try ... without trying to fix you, without calling you a liar by denying how you are doing or how you are feeling by telling you that you look fine, look great, look ... anything but what you are trying to say.  She writes:

9:45 pm

75/57 101 bpm (standing)

It hit me like a pile of bricks smashing down on my body tonight. It has been building for days and it finally landed on me: I can't get off this carousel. Another metaphor: Every morning, day and night I fill a pool up with water, then I go to sleep. When I wake up, I go to the pool and it is empty. And I fill it back up again. And on and on and on. The damn pool never holds the water over to the next day.

Well, I am tired of filling the pool with water and I'm tired of spinning around on the carousel, it's making me dizzy and giving me a headache. But I don't know how to get off. I just know I want off.

The emotional drain of waking up every day with varying degrees of pain from the migraines while trying to stay on my feet without passing out has. gotten. old. It is making me an emotional wreck. All the medications are making me an emotional wreck. Where amI? Hello? Are you in there anymore?

What do you even want anymore? The thought of having a relationship, always a minefield in the best of health, scares the living crap out of me now. I probably wouldn't even remember hisname.

And the job? I won't even go into that, but let's just say I keep playing the lottery...

The absolute worst part, the part that is killing my soul right now, is that I try, every day to overcome the pain, the dizzyness, all the symptoms, and I even have some success. And for some reason, my mind thinks ok, then that means they won't come back, right?, I've won. But then I go to sleep and the sun comes up and I wake up and I feel the burning in my head again, and I stand up and I feel like I'm walking along the side of a high cliff. And I know I have to take the damn medication and drink the glasses of water, and eat some salt, in order to leave the apartment-again. And I know it's going to take two hours before my head feels human-again...

Why won't it all just go away? I want out of this body that is holding me back from doing and feeling so many things. And to make it just a little bit worse, no one can understand this but me.

Boy, do I understand why she wrote what she wrote and why she stopped writing.  I did myself, after all.  But writing helps me.  And this really is the only record of my life over the past 11 years.  A record that fire or flood or personal computer breaking will not erase.  So I aim to start again.

But it is too much work to censor what I think and how I feel and what is happening to my body as I have been, to a certain degree. I am not brave enough, courageous enough, to capture all that I want to be remembered ... for me.  What I can, though, I will.  Like the bridge.  Somehow I will find a way to write about the bridge.


Lord, have mercy.  Christ, have mercy.  Lord, have mercy.