Jinx!

I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.

In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.

While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.

So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.

Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.

My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends).  My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic.  I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).

So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!

Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.

I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).

Ssshhhh…..

frog

Woody and Hannibal…When Worlds Don’t Collide…

Woke up early. Got ready for the MRI. Alec picked me up and we drove up north and found a coffee shop. Nice hot coffee, one single donut hole to cushion the hastily swallowed Ativan pill, and off to the lab. Fill this out, answer these questions, sign here.

Standing on the defense of a case of first rate denial, I plead absolute negligence in finding out before hand what my portion of the costs would be.  I got the procedure codes from the desk administrator and gave the ‘ol insurance company a call. When all was said and done, my out of pocket expense was going to be upwards of $800. I don’t think so.

This is not a critical procedure to my MS. It was recommended by a doctor who suggested that as my insurance would be running out soon, and I’d had some flare ups last fall, it might be a really good idea to get them done. I begrudgingly agreed with her and hence today’s scheduled appointment. But $780!? Nuh uh. No way. I just can’t afford that!

Nothing motivates me faster than not being able to accomplish something, even something as simple as not getting a dreaded MRI because I can’t afford the co-pay. Watch out world. Once this Atavin wears off ~ as my brother always says~ I’ll be Back, I’ll be Bold and I’ll be Bad!

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!

 

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.

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.

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