Exacerbation Exasperation

Exacerbation: make (a problem, bad situation or negative feeling) worse

Exasperation: irritate intensely; infuriate

MS comes in several forms. The first and kindest is known as Relaxing-Remitting. The National Multiple Sclerosis Society defines it like this:

People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

That one is a walk in the park as far as MS goes. I’ve had MS for over 25 years, and as evidenced by recent Facebook posts, some friends I’ve known for 30 years didn’t even realize there was an issue with my health. So what if I’d stagger around a little bit ~ it’s no secret I like my wine and perhaps they thought I’d had a tipple a little earlier than usual (really, 10 am? It was the music business, but anyway…).

Next comes Primary-Progressive. Apparently I opted to skip over this one completely.

This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. 

Then we start into the big daddy part of the equation. Secondary-Progressive.

Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. 

My beloved neurologist Dr. S wrote a letter for me in support of my disability claim stating that I had moved from relapsing-remitting to secondary progressive. Silly me, I thought maybe he was just being nice and exaggerating my exasperating exacerbations for the benefit of my pending claim. On the inside, I knew better. Dr. S wouldn’t do that (be nice, yes; write an untruth, no).

Finally, there is Progressive-Relapsing. This one starts out bad, stays bad, and gets worse.

In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

I thank my lucky stars daily that I am not further disabled. I still hirple around pretty good and manage on my own for the most part. Except. Except for the monsoons.

Spasticity is a common symptom of MS. Again, the NMSS: The word spasticity refers to involuntary muscle stiffness or spasms (sudden muscle contractions). In laymen’s terms, it means that (in my case) I either walk like Frankenstein, or my knees suddenly give out, or my foot drags and I trip. To give you a better idea, I recently visited my surrogate granddaughter who had just learned to walk 3 weeks earlier, and we walked just about the same. It also causes muscle weakness and it is wreaking hell on my gorgeous gams, I can tell you that.

Major triggers of spasticity are heat and humidity. (Southern Arizona! Good plan, Erika!) One of my favorite things about living here in Tubac are the monsoons. Big, huge, towering white spires of clouds that can bring wind, torrential rain, flash flooding, hail and magnificent thunder and lightening ~ it is a spectacle like no other. These storms are often followed within minutes by bright blue skies and enormous full bodied rainbows. It is magical.

But the humidity is hell. And wouldn’t you know that when I was in California last week, they had an unusual and unexpectedly hot and humid spell that brought…monsoons.  So for 2 weeks now, I have been staying inside, sleeping like 15 hours per day, and unable to walk more than 2 steps unassisted.

I realize my best bet might be a move to Siberia. Cool weather, hunky Slavs, vast lowlands and fluffy dogs. Instead, I’m heading moving back to Southern California this fall and leaving my little desert paradise. Hopefully the monsoons there were an anomaly this year and not an ongoing trend. That would really exasperate me!

Grown Up Doctor

How refreshing. Yesterday I went to see the doctor assigned to me for the 2nd round of my SS disability claim. Unlike Dr. Flintstone, she actually gave me a quasi neurological exam! She asked what meds I take, what characteristics my symptoms took on and not once, did she ask me if my children were married or why I lived in Tubac. Hooray! I feel like I might actually have a chance this time. At the very least, I feel the information she submits to the powers that be up on the big SS disability judgement thrones might actually reflect what is going on. Fingers crossed!

Woody Woodpecker Meets Hannibal Lecter

I’m feeling very anxious, because tomorrow I go for another dreaded MRI. I think this is probably my 4th or 5th time. The neurologist I met with at the University of Arizona hospital recommended having another one based on the exacerbations I had last fall and before my insurance runs out. I know she’s right, but ugh. I don’t like them.

I am having my brain, thoraxic spine and spine all viewed. Although it is not invasive like a surgical procedure, it is the most intimate encounter with your insides that can be done without using a knife. For those of you who have never experienced this particular procedure it goes like this: you arrive showered and wearing no jewelry or hair product or deodorant, then  gowned and put onto a stretcher type apparatus (a gurney? A bed? A table?). You are then injected with dye. In order to maintain total stillness, your neck is stabilized with a collar type thing and then a Hannibal Lecter type mask is placed on your face and you are fed into a giant, scary tube into a machine.

Sound fun? Now you are told to just breathe deeply and stay calm. Oh sure. What the fuck!? Get me out of here!! Breathe. Breathe. Breathe. Phewww. Ok. Once inside the tube, these mechanical noises from the Alien movie start engaging, and then this knocking sound starts like Woody Woodpecker is circling your head and pecking and looking for the best cranial opening he can find. No wonder I feel like I’m going nuts!

The whole thing takes over 2 hours. That’s right, 2 hours. I take music and headphones, my teddy bear Eustace, and this time 2 valium. I’m not scared of MRIs anymore, but I can’t say I’m looking forward to it. Damn, I hate MS.


Important Papers

My father, Erik, was a construction engineer. He was the kind of Dad that went off to work in the morning with a big leather briefcase filled with papers to some mysterious office somewhere (there was no “take your daughter to work day” back then) and then showed back up at 6 or so for cocktails and dinner.  Next day, same ritual until the weekend which generally included yard work, a SF Giants ball game on the radio and a BBQ.

These were the 1960s, back when the 3 television networks signed off  each night and a good neighborhood game of kick-the-can could last until 10 p.m. Without sounding like one of those internet pass along ‘remember when’ emails, these were good times that required good old fashioned energy and imagination for fun.

Dad’s mysterious briefcase contained some exotic items to our young minds, including carbon paper, change order forms in triplicate and check requests. The advent of computers has made all of these hands on items obsolete, but they held a magic to my sister and me of how grown ups moved in the world ~ a step up from nursing and bandaging our poor stuffed animals imagined wounds (we traveled to Europe as kids on an airplane and so ministered to Tigger and Hippo with packaged mustard samples – very new age, albeit quite messy).

As Lisa and I elevated our play standards from (oh, so childish) nursemaids to (oh, so grown up) business women, our props necessarily needed to change. Dad thankfully obliged with some items from The Briefcase. With such a juicy selection of forms available to us, no doubt our favorite was the bid sheet pad. Basically, it was a paper version of an excel spread sheet.

We invented a game called Important Papers and it went like this: we would take turns sitting across from one another with the pad in front of us. Whoever had the pad would ask the other one Important Questions (like what? I have no idea) and then duly note the answers in the columns of the sheet. All Very Important.

We played this game endlessly. We loved being the Important One. As we really did grow up, both Lisa and I came to realize that much of life mirrored our game. A trip to the DMV, a job review, an application for a home loan or a social security disability claim often seems like just one big game of Important Papers. There so often is someone in ‘authority’ asking inane questions, making notes on a random form and thereby stipulating your future.

It makes me wonder. Although the medium has changed from paper to electronic bits, our world still seems to consist of endless games of Important Papers and briefcases filled with grown up and magical papers. Makes me want to go out and play kick-the-can with my pals, because in the end, the weekend is still yard work, baseball on the radio, and a BBQ.

What the Hell?

Sigh. According to NOAA it’s going to be 102 degrees today. And 107 degrees tomorrow. Really? Pure hell. My fellow MS-ers out there know what that means. Everything that is twitchy, painful, exhausting, numb, jumpy, gimpy, burning or just plain off ~ is about to get worse.

For the most part, I put myself under house arrest and do not go outside. This sounds like a perfect opportunity then to do laundry, pay bills, clean the kitchen, vacuum, go through closets, etc. Not so. Despite an air conditioner that goes up to a Stun setting, the heat permeates the psyche in mysterious ways that deem book reading a major activity. Fortunately, my friends gave me some books to read last night, I have some cold watermelon in the refrigerator, and a house full of many, and very, patient dust bunnies.

I went up to Seattle last month to visit my sister, brother in law and nephews. My sister, as I’ve mentioned before, is an amazing athlete. She runs, rows, does yoga, bikes… all while raising two incredible and active young men, working full time, running a gourmet kitchen and helping her husband start a new venture. She is basically fabulous (and today’s her birthday ~ happy day, Lisa!).

Lisa works out with a trainer in Seattle named Michael. Michael is 1) gorgeous 2) patient 3) knowledgeable 4) kind 5) see #1. As a birthday gift to me, Lisa gave me a session with Michael at his gym (where I’ve discovered my sister is some what of an icon ~ all the women aspire to be as strong as she is). Michael gave me a wonderful series of exercises using bands, light weights, balls and straps. I came home all gung-ho and worked out every day ~ balance was better, the hirple eased up, I slept better. Then…a trip to California, so I missed 5 days….now it’s as hot as hell here, and a workout consists of lifting the lever to turn the A/C up. This is not good.

Writing this is confirming my evolution of morphing into a slug. As much as I may not like the whole bathing suit thing I am going to go right now and head over to the pool for some water jogging. I can see Lisa waving at me and giving me a high five ~ that’s all the encouragement I need. Thanks, sis!

Welcome To The Neighborhood

The housing area that I live in consists of 108 units and only about 15 or so permanent residents. Of those 93 units, many are in a rental pool for snowbirds, border patrol or just used sporadically by their owners. Consequently, there is always a lot of activity as people from all over the US and Canada come and go on a regular basis. You can always tell which ones are the Canadians ~ they’re the ones out by the pool when us locals are still wearing sweatshirts.

As I live in an end unit, right across from the pool, I have a pretty good view of what’s going on if I care to. I admit, my inner Gladys Kravitz does sometimes rear her ugly head, and I sit and look out the window at the comings and goings of the people around me.

A couple of days ago, I had just finished cleaning the cat’s litter box and had a bag full of, well, cat shit that I was taking out to the trash can. I opened the gate and noticed some people unpacking their car across the street. Naturally, I very nonchalantly sauntered out down the path all the while spying on what they were doing. Naturally, I wasn’t paying attention to my feet (which require quite a bit of focused guidance) and naturally I stepped off the path onto the gravel and started to lose my balance.

I think I’ve made it pretty clear before that balance is no longer one of my strong suits. One tiny misstep and there is no going back. I’m sure my arms flailed and I may have grunted or cried out in some fashion, but next thing I know I’m lying on the ground with a rock lodged in my hip, my elbow bleeding and the bag of cat shit broken open and splayed all around me.

There is something about falling down that cracks me (and most people) up. I think it’s a combination of embarrassment and an element of buffoonery. There is also something scary about falling down (am I hurt?). And of course everyone’s very first reaction: “Did anyone see me do that!?”

So I’m laying there slightly giggling, with a few tears stinging my eyes, surrounded by cat doo, trying to assess the damage when I look up to see the new neighbor that I’d been staring at offer me her hand. What could I say? “I’m ok, really, thank you, I’m ok. I’m Gladys Kravitz, welcome to the neighborhood!”

Alrighty then…bring it on!

The last few weeks have been overwhelming to say the least. So many details and forms and appointments and meetings and STUFF to do. But!

  1. Taxes prepared and ready to be filed ~ check
  2. Forms filed for SSD reconsideration, including letters needed and supplied from doctors and me (with assistance from legal friend) ~ check
  3. Botox treatment ~ check
  4. New windshield in car ~ check
  5. AZ Dept of Economic Security paperwork and back-up ~ check
  6. Wild salmon thawing for dinner ~ check

Whew! So now I wait until Uncle Sam and Aunt Jan Brewer decide my financial fate. This leaves only one thing left to do. Wait 4 more minutes until it’s 5:00 and celebrate the finalization of all this stuff with a martini. Onward and upward!

 

Roller coaster…

I haven’t posted in some time due to house guests, another trip to CA, taxes, etc. but I think the main reason is I’ve been processing ~ deeply processing.

You see, after I got turned down for disability I did a bunch of research on things. The unhappy statistics I uncovered included that first time applicants were turned down something like 60% of the time, and 2nd time reconsideration applications were turned down 85% of the time. Shit. Not good odds.

I also was counseled to look up attorneys on this certain website and see how they stacked up with peers and clients. So I Googled and researched and emailed and Googled until my poor numb fingers were like cold dead fish. The net result is I’m filing my appeal myself with the help of some great books (thanks Robin and Rudy!); some A-one letter writing coaching from a friend who has worked extensively in disability law (you know who you are); and lots of good advice from the National MS Society website.

I found an attorney here in Tucson who comes very highly rated by the lawyer/peer rating and also also by friends here who have used him. I figure if I have to take this one step further to a judge, I want someone local rather than some slicker from NJ.

That decision having been made, I hirpled down to the SS office in Nogales to get some application paperwork (the filing online website being inoperable for some reason). I met with a very nice lady who set me up with what I needed. In the course of the conversation, I asked her a question: If the state sees me as disabled (so no unemployment benefits) yet the Federal government does NOT see me as disabled (so no SS benefits) then what the fuck does she suggest I do for some income!? (Ok, that was my inside voice. I actually asked her very politely).

She suggested I head around the corner to the Arizona Department of Economic Security. This is where the pondering and the processing started.

I went in and grabbed an application. Apparently, with zero income, I am conceivably eligible for food stamps and state subsidized health care.

Hmmm…..let’s look at this for a minute.  I own 2 homes. I own a car (a BMW no less). I have money in the bank. I have a stock portfolio. I have no debt beyond my mortgages.I have MS. I have no income. I have limited physical energy resources. I hirple. I’ve paid into the system and played by all the rules for almost 40 years. I don’t think I should be forced into living in squalor before I get the help I believe I’m due.

Anyway. I take note of my surroundings and one very stark and striking fact becomes clear:  I am the only non-Hispanic person in the room. When I take my application up to the clerk she says to me, “is this for YOU?!” I assure her that it is, take my seat and jump on a roller coaster of emotions that, in no particular order, go like this:

Anger, humiliation, fear, righteousness, embarrassment, fury, shame, frustration, sadness, pity and mortification. That’s off the top of my head. At one point I wanted to scream. At one point I wanted to be deified. At one point I started to cry.

I’m not a big fan of “Why Me”, I mean, heck, “Why Not Me?”. This however was one major eye-opening experience. The gamut of emotions and thoughts that ran through my head included some that I am too ashamed of myself to admit here publicly. One big take away for me was this: every politician from your local rural mayor to Mr. Obama himself should all be required to enter into this system for even just an hour or so. It is extremely humbling, to say the very least.

God bless America, I think.

 

Cat Scratch Fever

Today I’m feeling just disconnected and at sea. Disability attorneys. Paperwork. CASDI. Doctor’s reports. Forms. SSDI. Health insurance. More forms. More paperwork. And really, what the hell do I know about hiring attorneys and filling out government forms? I probably shouldn’t say this out loud, but it is b-o-r-i-n-g, to say the least. And extremely overwhelming, too. Blech.

Overseeing this endless computer drudge are Cleo and Clark. Now Clark likes to sit on my lap and look fabulous while I’m trying to type. Cleo on other hand, is a scrappy, bitter hag of a cat. She does this spooky staring thing that just creeps me out. She meows really loudly and persistently. If you try to touch her however, she hisses, growls, spits, scratches and basically is just one old grumpy gal. Considering she’s pushing 17 or so (what’s that in cat years, like 300?) I imagine I’d feel pretty bitter too.

One day she was boring holes into the back of my head when I was making bread using a mixer. I became so frazzled that I lifted the paddle out of the mixer while it was still powered on and bread dough went flying all over the kitchen ~ floors, ceiling, counters, cabinets.  This made me more than a little nuts, so I threw her outside where she proceeded to ensconce herself  on the doorstep of the glass paned door and STARE at me some more. I closed the shade and considered a shot of scotch. This cat unnerves me!

Cleo adores Kate. Whenever she comes to visit that cat is the nicest, sweetest little kitty you’ve ever met. I keep trying to get Kate to take her back to California which she declines to do, because I think deep down, my friend knows she really is possessed by demons.

And the Verdict Is In……

Well I got some good news today. Turns out that despite the MS diagnosis, the baclofen, the 3 day naps, the walker, the hirple, the walking stick, the solu-medrol infusion, the hand numbness, the scooter, the endless Dr appointments, the tripping, and the exhaustion, according to the US government I am not disabled after all. Whew! What a relief!

In spite of receiving this happy missive this morning in the mail, it prompted somewhat of a mini-melt down on my part. Fair enough, I think. There went Plan A out the window and for the first time I felt hopeless, frustrated and quite frankly, afraid. Egad, now what!?

I will sort this out. It will take time, patience, perseverance, smarts and not a little cunning. I need to let the state of Arizona know ~ maybe they’ll take me off their disabled list since Uncle Sam says it isn’t so? A little unemployment aid would come in handy right now….

In the meantime, now that I am able, I think I am going to go for a run. Or wait….maybe just a hirple with my walker instead.