Is It A Little Warm In Here?

When I was in the audio business I went to a LOT of trade shows. At one company I worked at we had a slew of rep firms that sold our products across the nation into music and pro audio stores. These warriors obviously attended all the same trade shows as me, which were scattered throughout the year all over the country.

Although it might be hard to fathom, I was a pretty irreverent little punk back then (as were all my co-workers ~ but damn we certainly were witty and clever). We had this one guy who had a firm based in Minnesota. No matter where we were, or what time of year, or what time of day, he would always come running into our booth sweating profusely and saying, “Is it a little warm in here?”. Mercy, we made a lot of fun at the expense of that poor guy. Apparently I took the communal comeuppance and was chosen to pay the group sins by getting MS, whose worst enemy is heat.

Back in the day (so I’ve heard), if you you were suspected of having MS, you’d be thrown into a tub of hot water. If all symptoms got worse, then there you’d go. MS. I’m not sure if that’s true or not, but suffice it to say I haven’t had a hot bath in years.

Now add an equation of MS, medications, menopause and living in Southern California and you’ve got one noodly challenge to standing or walking. On top of this, I can’t stand air conditioning. All that fake cold air blowing over my neck, head and body – yuck. Consequently, I tend to be one big Gumbyesque mess come summer. And of course this being Southern California, it always feels like summer.

This new treatment that I’m about to embark on (the goal of which is to stop progression), has offered some other Lemmies (evidently the Lemtrada “in crowd” gang moniker) relief from the heat as time has gone on. This would be a big bonus for me! Geez, I’ve become a gray haired, over weight, over heated grumpy old lady with a walker now. I’m so totally ready to be cool again! : -)

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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.


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.

The Best Time

It’s been 10 months since I was laid off from my cushy, six figure job, that I really no longer enjoyed, nor excelled at. Despite going from $10,000 per month to $0 per month income, I am having the best time!

I think it’s because I am learning again, so consequently I feel energized and engaged in my life. Granted, it can be a little scary some days, but due to good planning on my part (I surprised even myself) I still have some time before I need to move into my car.

Writing this blog has proven to be one of my favorite activities. In just one month I’ve had over 725 unique visitors (that’s pretty darn good!) and am now rated on Alexa.com at 18,279,024. Google better watch out~ I’m coming up from behind! Lisa is encouraging me to monetize and has sent me some very interesting and exciting articles on how to do that, so check in early and often please to keep those traffic numbers growing!

In addition to blogging and making headbands with Anna, I’m also writing for some friend’s websites (construction and real estate). Anna and I are doing floral arrangements for a wedding next weekend in California. My good friend V. from Nogales is teaching me about produce marketing which I’m finding really fun ~ it’s a nice change from microphones. That being said, one of my old partners in crime is looking into some opportunities he might have available for me back in the music/pro audio world; and my brother in law wants to tap into some of my advertising brain power for his commercial fishing websites.

See? Doesn’t that sound way more fun than doing the same job year after year for a big, feckless corporation that changes management like the oil in your car? As I’ve said before, with the global economy worth somewhere in the neighborhood of 50 trillion USD (that’s $50,000,000,000,000) snagging a little piece of it to cover my ass-ets doesn’t seem too daunting now, does it?

As I Hirple Along, Singing a Song: Updates on Cows, Disability, Unemployment and More….

I was just reading some past posts and figured anyone following this blog must be dying for some follow up info, so:

1. 10 cow headbands almost drove Anna mad. She made them, she grumbled, and now we’ve gotten  an order for monkey headbands. I kid you not. The good news is the horseheads sold, as did 8 others in addition to the custom order cow headbands, so now we are both getting ready to retire. Monkey headbands, really? This is the gravy order, no doubt.

2. The follow up to the solu-medrol is a new prescription for a muscle relaxant called Baclofen which apparently is specifically for MS patients who hirple. I just started it and will post as I progress…but I think it might be working already ~ I WALKED .60 MILES TODAY with only a walking stick! This is huge and I am happy!

3. Arizona sent me a letter confirming that I cannot get unemployment as I am disabled. Huh. Ok, so with no Fed decision yet, I am getting exactly ZERO help from any of the entities that I have paid into for 35 years. Something feels very wrong with this system.

4. Believe it or not, I found fresh Dungeness crab at the Tubac Market last night and as it is one of my favorite things in life, I bought one as a treat. Last night was the famous Lopez red sauce with a baguette and sauteed spinach, tonight is a carrot soup with Dungee crab…can’t wait for this! In the process I found this really cool food blog. Here is the recipe: http://butterpluscream.blogspot.com/2010/02/carrot-soup-with-dungeness-crab.html

Egad – Health Care…..

I am not very politically inclined and this is certainly not a political blog. However, being unemployed and conceivably uninsured within months, I feel my poor chewed fingernails are due some explanation as to why they are getting so much attention lately.

Looks like Arizona is disinclined to give me any unemployment benefits due to my disability classification (except I have not been officially classified yet).  The Feds are pondering my medical reports and will advise me of my SSD status by Feb. 13. I’m in Limboville right now, and will keep you posted.

My dear friend Nicole, who lives in Nashville, has been diagnosed with MS for 5 years. You would be hard pressed to find a more positive, sunny and hardworking person than her. She has been betrayed by the system over and over, and still doesn’t complain. She just wants to see things righted, and she wants some help.

The health care bill no doubt has lots wrong with it, and many ramifications to small business owners, taxpayers and others. I don’t purport to have any understanding of it at all, really. Two things stand out though, that are like beacons of hope to those of us who have a chronic illness, are self employed or unemployed, and single. The bill offers us 1) guaranteed insurance of some sort and 2) exemption from pre-existing conditions bias. Remember that Elizabeth is a Type 1 diabetic, so this super important to her as well.

When my COBRA runs out, and if I’m not yet approved for federal disability health care, my fingernails are going to be giving tips to my knuckles on how to survive. I don’t even like typing this and putting it out there, but it is a reality. I hope for my sake, Nicole’s sake, Elizabeth’s sake and all our sakes that this issue gets sorted out one way or another so that this great country of ours can live up to it’s tenets of brotherhood and love. We don’t want a hand out, we just want a hand to help us.

Tennesseans voice concern about possible health reform repeal