Disability Journey--end part from mono

This was on the other blog, of course.  

Almost forgot to add it to the life stories--LOL! 

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Oh no!  I have no idea why it has this ugly highlight on it when I copy and paste.  Never did that with the other stories from my main blog?  Sorry, I don't know how to fix it.  :(

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Anyways, I have a confession to make.  Or more of a shocking realization I couldn't ignore or excuse away as to how truly bad off I have been this past year with the move.  Totally freaked me out, to be honest.

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When I saw the pictures of Ian's birthday party I had no clue who the little one in the high chair was.  I figured out it must be Leah's sister's baby--but had no recollection of ever having been told they had a second child!  Zero.  

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Granted, Leah is a very quiet, close-to-the-chest kind of girl and I rarely hear that much about their lives...but Leah swears she told me about Elliott and even showed me pictures!  He was born in September...when I was struggling to unpack and had reached a point of needing lots of help from Dagan and Leah to do so.  Total brain fog.

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That level of brain fog--no retention whatsoever--has happened to me before.  But I didn't think it had this time with this move.  I wonder what else has been lost to me?

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When I had been working the two jobs at Lee Square in Minneapolis and ended up with mono (1999)--that was the first time my brain just didn't work for me anymore.  No retention.  You can be so exhausted that you can not think anymore.  I could read something over and over again and not remember one word of what I read.  If I sat down and didn't move for more than about 20 seconds I would doze off.  Sometimes I thought I was asleep with my eyes open.  My doctor wanted to put me in the hospital, but I had no insurance coverage.  

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My boss refused to give me time off and I couldn't live there if I quit the day job in the office because the night emergency personnel job was only in exchange for the apartment--no income.  So--long story short--that is why I ended up moving to Fargo-Moorhead (without Workman's Comp's permission) to go to college...which I started while recovering from the mono.

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My brain cleared, but I was never really well again.  I caught everything that went around at school.  The kids at Concordia knew that if they needed over-the-counter medication or tissues that I carried supplies with me.  [Well, they also knew they could come to me if they needed a pen (choice of colored inks and types of pens), paper, stapler, highlighter (choice of colors), paper clip, safety pin, scissors...you name it...just like when I was in high school--LOL!]  

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But my general health continued to decline.  By the second year I couldn't work my part time job anymore.  By the third year at Concordia I had to drop down to three classes a semester instead of four (which was all that was allowed before you'd lose funding).  College was becoming more and more of a struggle because of exhaustion, pain, IBS, and the returning brain fog.  I even got tested to see if I had mono again--nope.  (Didn't really surprise me as I didn't have body pain or IBS when I had mono.)

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By my third year at Concordia, even with reduced classes, I had to drop a class first semester.  So, I started to look into switching to the public college where I could take two classes a semester and get funding because I was sinking fast and Concordia would have to kick me out, anyways.

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So, in what would have been my senior year, I switched over to MSUM (Minnesota State University Moorhead).  I tried everything to not miss classes...to persevere.  All afternoon classes, classes only three days a week...professors even gave me extensions and allowed me to have more absences than officially allowed (because I had good grades)...other students volunteered to share class notes and contact me to let me know what happened in classes.  Regardless, I didn't manage to complete all four classes.  

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When summer vacation started I finally went in to the doctor.  I told him I was sure I was dying of something.  Nobody could be in that much pain all over their body and be mono-tired without them dying of something.  I had tests all summer long.  Finally he called me in to give me the diagnosis.  He told me--"The good news is--you're not dying.  The bad news is--you're still going to feel like you are."  (He knew me and my sense of humor well by that time.)  Told me--"You have fibromyalgia."  "Huh?  What the heck is that?  I watch Oprah.  Never heard of it."

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I was very fortunate to happen to go to a doctor who 1) heard of fibro and 2) believed it was real.  I had friends and family who didn't accept it or believe it was a real thing for a long time.  Heck--I struggled with acceptance for a long time, myself.  I was used to just pushing through anything and everything--mind over matter, you know?  But that doesn't work with fibro.  You pay dearly for it...even just slightly pushing the many limitations you already know you have.  

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Anyways, I had had several people telling me to apply for disability.  So I finally did that.  And I got a lawyer, as everyone told me was the best way to go (although he turned out to be almost useless because I wasn't going to amount to much money for him).  He did file.  I was rejected.  He filed again.  I was rejected (he didn't even remember who I was outside the courtroom and hadn't read any of the documentation I had sent him).  He filed again.

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Meanwhile I was making a valiant attempt to tackle a second year of part-time college at MSUM...which I hadn't been able to pull off the first year and I was in even worse shape, so it didn't look promising. My school funding was my only income all those years since I had moved up here--well, ever since I couldn't even manage one day a week for 4 hours anymore after the very first year.  The money I got twice a year had to last me for the entire year--rent, etc.  I had moved up here with mono and no job--had to file bankruptcy and give back my car, too.  I had to get help with rent from Federal Housing and get an EBT card (groceries).  If I quit--I had no income at all--would lose my apartment--had no money TO move and no where to go TO.  No money to even put my belongings in storage so I could crash on Dagan and Leah's couch.  I had all-encompassing pain and it was a struggle to keep my eyes open...plus I couldn't remember anything for two seconds.  That was the second time my brain just wasn't working for me.  I used to wake up and just lay in bed and cry.  I didn't know how I was going to survive the day.  Even just a day at home doing homework was totally overwhelming.

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    What I decided to do on my own was see a free counselor (I'd fall asleep in the waiting room and then cry in front of her for an hour--insisting I was only situationally depressed, which was true) and I made an appointment for a Functional Capacity Test.  I knew I needed proof by medical professionals for the third disability decision/rejection.

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The Functional Capacity Test is a 2-day affair.  You are supposed to go two days in a row and they do all these simple tests.  Well, they sure looked simple to me.  Before we started, I filled out forms that asked me what I thought I could do.  I remember I thought--well, most of this isn't gong to help me at all.  I can do all of this--except for the bum arm stuff, of course.  (You guys know that I do suffer from undying, unrelenting optimism.)

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  OMG!  It was awful!  Yet it only entailed things like standing for 20 minutes, carrying things, climbing up and down a stepladder, walking a balance beam, doing small motor skill stuff (fine with my right hand and only thing I did well--until I was so shaky later in the day), and I can't even remember what all else.  By the time I had to do the walking of a long hallway...she insisted she push me TO the long hallway in a wheelchair...and I was struggling not to cry.  I kept apologizing.  Kept telling her that if I only had to do one of these things in a day for a short period of time that I could do them--honest!  Like climbing up and down a stepladder, for goodness sakes.  But after doing stuff all day long--I couldn't.  No strength left.  No balance left.  Couldn't even walk very far at all down the long hallway.  She stopped me...and made me get back in the wheelchair.  I was mortified.  And I was truly, deeply, shocked at how bad off I was.

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It was winter and I had to bring shorter pants with to wear so they could check your knees and ankles for swelling and such.  By the time she let me go home...I couldn't even change to my long pants...and I was pain-crying.  I drove home shivering in my capris.  Hurt so badly to drive--to press on the pedals, to turn the steering wheel...and the tears made it harder to see.  Pain-crying (what I call it) is when you have tears flowing down your cheeks and you aren't even aware that you are crying.  It's just an involuntary reaction to the knife-pain and exhaustion.  

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I made it back to my apartment, collapsed on the couch, and later discovered when I had to pee that my knees and ankles were so swollen and I was so weak that I couldn't walk.  I had to sit on the floor and kind of scoot backwards on my butt to the bathroom.  Dagan and Leah came over (shocked at my condition, I think) and brought me food...for days.  It took me a week before I could go back to do the second day of the testing!  She didn't push me as hard the second time.  Or let me push myself as hard, to be honest.  (I aim to please, you know.)  She was a sweet girl.  She emphatically pointed out the vast discrepancy between what I "thought" I could do and what I actually could do.    

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 I'm better at it, but I still tend to regularly overestimate.  ;)

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Meanwhile, back at the ranch...

I am ashamed to admit this, but I wasn't able to complete one class--either semester--that last year.  Not with extra time and help from classmates...just could not physically do it.  I could barely manage daily maintenance of myself, to be honest.  I had to quit school.  I was losing my apartment when my pre-paid rent ran out.  Had no money to move.  No income.  Couldn't work.  I had been in for the third court date for disability and never heard anything (but had turned in the functional capacity test results).  Nobody wants to end up a burden to other people.  Can you say situational depression?

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    I remember having one of those handing it over moments.  I tried everything I could possibly think of.  I was beaten.  If I was meant to be homeless and a burden, so be it.  Somehow things always turn out for the best--even if it is not the way we expected.  Maybe it was going to be good for my soul to be homeless?  Anyways, I handed it all over to my guardian angel.  I trust him with my soul.

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Within two weeks I was accepted for disability, got a back payment so that I had money to move, and found a low income apartment in the middle of winter!  It was a horrendous move--shyster movers who tried to get more money from me (I refused), moved like snails, broke lots of stuff, took all day & night (even took a 2 hour dinner break with half my stuff in the truck and tried to charge me for their time).  They took me to court and lost, BTW.  :)  But, I digress.

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I was in such terrible shape after that move (11 years ago Feb) that I could barely walk and refused to even have anyone come and help me unpack for a week.  They had just made my bed and hooked up the TV in the bedroom and put up the shower curtain.  I wasn't up to evenoverseeing unpacking.  I ate dry cereal and toast--and spent the week in bed.  Dagan and Leah brought me other food regularly.  Barely remember that move any more than the move up here with mono--LOL!

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Which brings me to this move.

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I truly believed that I was in a lot better shape and had done a lot better--which I did do better physically, but I was still in worse shape than I even realized!  And the exhaustion part...I totally underestimated.  When I said a while back that it felt like the fog was lifting--that was quite literal.  I know at times I felt like I did when I was in college...at the end.  I knew I had trouble reading sometimes--retention.  But not remembering Elliott--well, I was worse off than I cared to admit to myself--again.  That is proof of how bad the brain fog really was.  How weak and exhausted and in pain I was.  My brain wasn't always working for me...again.

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So, I apologize for all my boring, repetitive blog posts, emails, and letters over this past year.  Those of you who have stuck with me--you have been with me at my worst.  Bless you, patient people.  Until recently I have been strictly on maintenance.  I know I have mentioned not being able to remake the bed for a week at a time...having to work up to making soup, doing laundry...and sometimes it was just to take a shower.  It wasn't that long ago I couldn't untwist a Powerade cap--even with a gripper--and Leah opened up all the rest of the bottles for me when she was here. 

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So, I am not only confessing to you but admitting to myself that I have been a lot worse off than I even thought.  I feel so badly that I didn't remember Elliott was even on this earth for nine months.  Not that I ever see them...or anyone, really, except McFamily and Caroline.  But, obviously and without a doubt, the brain wasn't working at all sometimes this past year.  No retention--again.  I honestly didn't think I was as bad as that.  Shades of the Functional Capacity Test!  Not many spoons--sometimes none and borrowing against the next day.  All my spoons were focused on the move until I was unpacked.  I'm kind of foggy about the family visit last year in October, too--that same morning was the last of the unpacking.  After that I kind of collapsed--on all levels.

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I am getting better.  Slow process, but the fogginess has lifted a lot.  I haven't been sick in a while (knock on wood).  The pain level is a bit lower.  And I still say--no better place to be laid up.  I dearly love the new apartment, as you know.  Karma and I have been so friggin' happy here--would go through it all again in a heartbeat.  I am blessed to have Dagan and Leah in my life looking out for me.  And Ian is just the frosting on the cake.  ;)