Phase 2

I filed all the paperwork myself for the second round of SSD as I mentioned before. I’ve been feeling confident and a little smug because I finally got the info from Dr. S who has been my primary MS doctor for 11 years and truly knows the course of my condition. He sent about 30 pages of back up to go along with his initial letter supporting my claim, so I’m thinking YES! No problem from here.

I thought it might be a good plan to read this medical tome that he had sent along detailing the progression of my MS over the last 11 years. It was not. Denial has been a key component in my personal MS treatment, and this sent a bit of a shock wave through the old denial pond.

It seems I have turned a corner. For the past 10 years I have been chronicled and duly noted as fine, stable, optimistic, slightly overweight (not by Dr S. but by a 2nd opinion man ~ bastard!), strong, and with all kinds of messy medical notated bits regarding the old spinal column and brain.

Somewhere mid 2010, the notes start to suggest some progression (finally some good news!) from primary-progressive MS to secondary-progressive (Oh. Shit. Not a good kind of progression at all). You are no doubt asking the same question I did: Well, what’s the difference?

According to my #1 go to resource the National MS Society (www.nmss.org):

The name for this disease course comes from the fact that it follows after the relapsing-remitting course. Of the 85% of people who are initially diagnosed with relapsing-remitting MS (RRMS), most will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without any relapses(also called attacks or exacerbations).

Well isn’t that special. Additionally, I found a hidden gem stating that based on the level of my demyelination, it’s amazing that I get along as well as I do. Another question as to what that means:

Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord.  In MS, the body’s white blood cells attack tissue called myelin sheath.  Myelin sheaths are the protective covering for nerve fibers in the brain.  Much like an electric wire is insulated with rubber or plastic, the myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.

When a myelin sheath is worn down or destroyed, the process is called demyelination. Demyelination causes the nerve fiber to be exposed.  The exposed nerve fiber is less able to transmit nerve impulses.  As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas, which are referred to as lesions or plaques.

Lots of demyelination = lots of of scar tissue called sclerosis = multiple sclerosis!

Damn! I should have kept my Nosy-Parker-Gladys-Kravitz self out of those notes. In reality though, it doesn’t really make much difference to me. Some days are better than others. Some days I feel – Oh! so demyelinized! Some days I feel OK. The pictures show my nerves looking like stars, that I can see reflected off the surface of my day to day life. One sclerosis at a time.

 

Get Off the Couch, We’re Going to Bisbee!

Being the people person that I am, I was delighted several years ago to discover Couch Surfing (www.couchsurfing.org). The basic premise here is that you register with this social media site and detail your hosting availability (be it meet for a cup of coffee or the offer of a few nights on the ‘couch’). There’s only a little bit more to it than that (some safety features for example) but once you’re signed up you can surf for couches to sleep on all over the world.

This is right up my alley. I LOVE meeting new people. Although the stars have yet to align for me to sleep on couches when I am traveling, I have hosted several times, both here and in California. My friend Nick from Manchester, England walked across America (yes, you read that right ~ from Times Square to Santa Monica); Ben came from England via Florida to buy a motorcycle in LA; Megan and Josh came from Michigan to help with the Floating Stone Spa relaunch here in Tubac; and most recently, Gail from Derby, England stopped by for a night and stayed for three.

Generally when visiting a new place you go to a hotel, sight see a bit, go back to the hotel, eat dinner, sleep. Repeat. Ok, maybe not all that mundane, but you get the idea. What makes CS so cool is that you actually get the opportunity to experience a place from the inside. Eat where the locals eat, avoid cheesy tourist traps, meet the natives. In Ben’s case, I put him to work in my garden  and then took him to a spa opening where he drank pink martinis and was fawned over by the ladies ~ he loved it! Can’t get that in a guide book.

So last week my newest surfer Gail showed up. Gail is my age and from England. She is surfing across the US from Florida. She is full of beans and we hit it off like a house on fire. Her plan was to head to San Diego from Tubac, but I convinced her a trip to Bisbee was in order, and she agreed.

We spent a lovely day in that funny little town. We drove around and looked at many of the famous stairs that are featured in the Bisbee 1000 race (http://www.bisbee1000.org); had a hamburger at the Copper Queen Hotel; met an old geezer in a period costume at the visitor’s center who told us about Pancho Villa and his purported German connections; and finally wended our way over to Douglas, AZ, a dot of a town seemingly half frozen in the 1950s.

The following day I took Gail up to Morning Star Ranch where my friends R & A live. They have a magnificent home on 36 acres of pristine Sonoran desert, which the average visitor from Derby, UK doesn’t usually get to see. We had a fantastic lunch and then a ramble through the ranch in a Jeepy type vehicle. I took a tired but happy Gail home where she quickly fell out of favor by kicking my ASS in Scrabble, twice.

Gail moved from Arizona on to Hawaii for a week, then she’s off to San Francisco for a week and then back to England later this month. I’ve forgiven her the Scrabble trouncing and I look forward to seeing my friend either here or there again in the near future.

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.

29 Days

My friends Karen and Billy came over for dinner last night (fish tacos) and she brought me 2 lovely gifts ~ one, a bowl of fresh cut up melon and two, a book which she put on my coffee table when she came in. As I was in the middle of getting the tacos together, I quickly only noted one thing that she pointed out about the book, which was that she had spilled water on it and so it was kind of “wonky” in appearance.

This was significant to us both, as my lovely friend is probably the only person I know who will lend me a brand new copy of a book before she’s even read it. Honestly, a brand new, unopened book is sacrosanct to just about every avid reader I know ~ except Karen. I try to turn the pages in little laps, not leave it open spine down, not take it to the pool and every other trick known for keeping a book pristine. Invariably and inevitably, the borrowed book ends up with a lipstick smudge, or a coffee dollop or a wine splash or some other tell tale sign that I was engrossed and consequently sloppy. Karen never seems to mind though ~ a trait I find both big hearted and enviable.

So her handing me a book that was so used was notable. It wasn’t until this morning that I actually realized that the book was one she and I had discussed called 29 Gifts. This is a book written by a woman named Cami Walker who is diagnosed with MS and changes her attitude and her life through the simple act of giving (and consequently receiving) 29 gifts in 29 days.

Not only did I love concept right off the bat, but the writing style of her book was like reading my own thoughts. She writes about pity parties. She writes about jumping out of planes without parachutes. She writes about not being willing to seem disabled to her friends. She writes about anger, humiliation, sorrow, frustration. I swear, if she knew the word hirple it would have been in this book.

Her “prescription” from a friend to give 29 gifts changed her in uplifting ways and inspired her to start www.29gifts.org. I have joined up and am starting my 29 day journey today, right now. Karen gave me the gift of this book and the idea of 29 gifts, and I am passing that gift on to you!

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.

Friendship

30 years ago today was a Friday night, memorable because Friday was “Dallas” night ~ that super cheesy, south fork forty, drama that captivated so many of us for so long.

I was living with Ken, the girls father, before we were married. He informed me that Friday night, that a friend from work was coming over with his girlfriend. Oh for Pete’s Sake. NOW? But Dallas is on! This was pre-TIVO and -DVR, so there was no chance of watching it later. Suffice it to say, I was NOT pleased.

I hauled myself up, changed out of my PJ’s, and  got myself in the mind-set to be polite to the co-worker and his no doubt ho-hum girlfriend. I pasted on a smile….the doorbell rang…Linda walked into my life.

Now, we’ve all met someone we really hit it off with right off the bat. To say that about Linda and me was putting it mildly. We started jawing and laughing and talking and confiding and crying and sharing right out of the gate, and we haven’t stopped since. You could not find 2 more disparate women when it comes to many things about us, but the essence of our friendship is built on a core of understanding, respect, humor and love.

We went to each other’s weddings. We worked at the  same company. We were pregnant together. We went through our divorces together. We went through children’s illnesses together. We decided one New Year’s eve that computers were stupid and made a New Year’s vow never to use one. We moved each other in and out of houses. We held each other’s hands through heartache and happiness. We traveled together. We were business partners. We’ve mourned the loss of friends together. Linda was with me when I was diagnosed with MS. We’ve always been slightly in awe of our friendship. It has withstood 30 year’s of life’s travails, and we are both surprised and eternally grateful.

I am blessed with many life long and long term girlfriends, as well as many new friends. I never take any of them for granted. Dorian, Tanya, Kate, Betty, Cathy, Rose, Joanne, Zirka, Cari, Maureen, Letitia, Chris, Margaret, Sue, Nan, Karen, Meg, my mom, my sister, my daughters…the list goes on and on. All these amazing women bring something so special into my life and I love them all.

Linda, however, is the only one crazy enough to remember that we met on the 3rd week of February, that it was a Friday (she was mad she had to miss Dallas too, initially) and that it was 1981. I can barely remember my own name somedays, so this is just one more reason why I love her. Happy anniversary, old friend ~ here’s to 30 more!

Plan B

My brother Dave called me the other night. He’d been reading my blog and was alarmed on my behalf that I have no income. Rightly so. I’m a little bit alarmed too. Unfortunately, when he called, I was suffering from some back pain ~ apparently I pulled a muscle while sleeping. Really? How the hell does that happen? I am totally down (albeit really bored) with having MS, but back pain? No way.  Although the pain is now mostly gone (it’s easing it’s way down my leg and out my toes), it has left me a little grumpy.

Now Dave was asking me if I have a Plan B. That got me thinking, do I even have a working Plan A? I suppose it is to get approved for Federal SS disability and work part time marketing produce (which I’m finding I really enjoy), consulting with my brother-in-law on his fishing websites, the occasional wedding with Anna, and of course, the ever profitable cow headbands.

Plan B. Finding, falling and marrying a rich rancher. Winning the lottery. Discovering uranium under my floorboards. Actually Plan B looks pretty much like Plan A, only more of it. Work. Work. Work. I’ll get my piece of that 50 trillion dollars Dave, don’t you worry.

Bladder Blog #4

I’m back from 10 days in California. During that time I watched the Super Bowl with Anna (ok, the last 3 minutes anyway); shopped for and cooked a birthday dinner (ok, Liza made the dinner) for my friend Tanya; called on my first grocery chain and talked about banana and tomato programs; went to the produce market with Liza; went to the flower market and put together 15 wedding centerpieces with Anna (ok, she designed them, I just copied); spent the night with my friends Betty and Bob; set up the wedding flowers; consulted on some advertising plans; had my hair cut (thank you, B!); went to a mall (twice!); did 2 store produce department site visits; washed and dried most of my clothes with a lipstick, and drove 8 hours each way there and back. Oh yeah, and had another botox treatment. And I’m wondering why I’m so tired!

I think I may have finally nailed it. I had a prescription for Ativan from my solu-medrol roid rage experience and I asked Dr. G if it would be ok if I took some prior to the treatment. Generally he gives me a little valium and I squirm and gasp and cry and cuss, despite it, and we both agree that we are not BFFs for those 15 minutes. So when I asked him about the bigger daddy Adavan, he said, “oh yes. Please do.” I took 2.

Although it was Anna’s turn to accompany me on this visit, Liza came with me instead. As an EMT, she is a virtual rock when it comes to anything medical procedure related, whereas Anna is more like me, squealing at a pinprick of blood. Bright girl that she is, she brought in an LA Times crossword puzzle book and proceeded to yell out clues which all 4 of us in the room were yelling out answers to. It proved a wonderful distraction. I was also stoned out of my mind.

I only yelled out the answer “F*** you!” (or variations on that theme) about 4 times. Considering the names I’ve shouted at Dr. G during past procedures, we all agreed that was pretty good.

So now I’m back home in Tubac, worn out and sleepy. But I’m wearing a thong.

More Scootin’ Along ~ Guest Post by Steven Miller

My friend Steven is one of my very best friends. He has his own health issues and certainly his very own style of wit. He offers this guest blog ~ hopefully his first of many! Without further ado, welcome Steven!

More Scootin’ Along

My name is Steven and I do not have MS. I am a music producer and consider Erika one of my very closest friends. The NAMM convention she describes in her “Scootin’ Along” story is one of the most noisy and physically exhausting environments I have ever encountered. I have always marveled at those had to endure the non stop madness for days on end.

Manny’s Music in New York City is perhaps the most famous music store in the US. On any given Saturday, the store is jam packed with 30 guitar shredding kids plugged into amps turned up to 10, 20 or more; drummers violently assaulting various kits and congas; and countless folks pounding on a vast array of keyboards and synthesizers. Add to that trumpets and trombones blaring, and well, you get the picture. The sheer cacophony is simply astonishing.

Now, imagine that x 1,000!!!!! That is the mind numbing experience known as NAMM. Good luck trying to hear anyone talk to you unless their mouth happens to be no more than 4 inches from your ear.

As an attendee, my limit was 1 day for about 3 hours max. Any more than that and your brain throws up the white flag before completely shutting down. Even if you don’t touch alcohol, I guarantee that you need at least a few drinks just to come back to earth after even just 3 hours in the convention center.

As luck would have it, I developed a music software product a few years ago, and you guessed it. My NAMM status immediately morphed from attendee to vendor. From that point on, I would no longer have the luxury of leaving when I reached the breaking point. I now had to demonstrate my product every second of every day!

While I was bemoaning this situation to Erika, we were also discussing her upcoming NAMM reality – introducing a red scooter as her newest and most eye catching fashion statement since a particularly alluring blue silk number that used to attract potential clients by the dozen.

While I do not have MS, I am afflicted with a severe back ailment that sometimes requires weeks of uninterrupted bed rest. I count myself very fortunate when I can get through any 24 period without crippling pain. The catch is that I never know what is going to transform a good day into a bad one. Sometimes it is a cough, sometimes it’s just lifting the lightest of items off a desk, and sometimes it’s simply turning my head the wrong way.

Near the end the first day of NAMM, I was in the midst of my umpteenth product demonstration when I spotted Erika’s red scooter rounding the corner to the isle I was situated. While trying to simultaneously keep eye contract  with my audience and the various computer screens that contained my demo material, I couldn’t help but notice that the scooter was heading straight into 4 foot tall stand that held a large speaker.

Knowing she had laid waste to one booth already, I was not eager to see her plow into this thing and have a 75 pound speaker come crashing down on top of her. I thought that maybe she would eventually recognize her predicament, but unfortunately was distracted by industry friends wanting to greet her and the red scooter.

Time was running out and impact was imminent. On top of this, I was still conducting my demonstration while trying to figure out how to stop this disaster. Luckily, I caught the eye of an assistant and simply said “Erika.” With that, I turned my head to the left to point out the situation that the assistant needed to deal with. To my shock and dismay though, the act of quickly flinging my head hit the proverbial spinal jackpot – sending excruciating pain throughout my body and almost launching me out of the high stool I was sitting on.

At that same moment, blood curdling screams and all forms of low brow expletives came roaring out of my mouth at a high pitched squeal. And if that wasn’t enough, I was wearing a headset microphone for the demonstration that was being pumped into some good sized speakers.

Apparently, this all added up to cause the volume of my amplified voice to be far and away the loudest element in the already deafeningly loud convention center hall. This became clear when virtually all time and space stopped momentarily. The hall became like one of those classic EF Hutton commercials – “When EF Hutton speaks, everyone listens.” Suddenly, you could hear a pin drop. It was like someone hit the mute button of the TV set and everyone just stood in place.

And funny enough, even though this was hardly how I planned it, my outrageous pain did at least serve the initially intended purpose. Erika did slam on the breaks as everything and everyone around her stopped in their tracks. So while she avoided deadly contact with one of JBL’s newest speakers, I was writhing in pain directly in front of 40-50 people who still were interested in the finer points of my software product.

When calm was restored, Erika asked what all the fuss was about. As it turns out, she had no idea how close she was to disaster. Even in my highly diminished state, I had to laugh. But the funniest thing though was, at that point, I needed the scooter just as much as she did! Although she declined to lend it to me, I did forgive her.