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

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! : -)

hot

It Does What, Now..?

Just over a year ago I posted about how excited I was to be trying a new dry cleaning fluid based pill, hoping it’d be a panacea, etc., etc. Well now, 13 months later I can report ~ yeah, not so much.

An $18,995 MRI came back all clean and rosy ~ no new lesions and others even reduced in size ~ this is all good. What’s not good however, is my new inability to do things, like, oh….. WALK. That particular skill has gone directly and solidly downhill.

Consequently, I scheduled a pow-wow with my doctor….wait, I haven’t told you about my new doctor yet, have I? Oh my goodness! Dr B. She is amazing! Very, very, very smart. She looks like Emma Peel as a Russian spy. She’s very stylish and gorgeous and super well dressed. Under her white doctor coat she wears super chic black A-line dresses or slacks and pointy shoes. She has teased hair, black eyeliner, gold jewelry and a PhD. In a nut shell, she is bad ass.

Dr B. and I discussed my options and together (with patient advocate daughter Liza by my side (it was her turn, Anna went last time)), we opted for another newish drug called Gilenya.

This will be drug therapy #3. Two main things seem to be consistent with MS drugs. 1) they are massively expensive and, 2) scientists seem to have now idea how they work. Witness the fancy brochure I had sent overnight to me from Novartis, (the makers of Gilenya). Tucked in amongst the glossy pictures of people laughing and splashing paint all over the place (why? I have no idea), and warnings of side effects you don’t want to know about, is this gem of a phrase on page 10: “While it’s not exactly clear how Gilenya works….”

Whoa, wait a second. WTF? I’m going to take some pill that is unknown as to how it works? The short answer is hell yeah. If it can slow this thing down, then you betcha. Honestly I don’t care how it works, only that it does.

So I get an EKG to see if my heart is ok. I get blood drawn to see if my liver is ok. I see a nuero ophthalmologist (this guy is also gorgeous ~ if you get MS, go to USC Keck Medical Center) to assess if my eyes are ok (I told you you didn’t want to know about the side effects…).  I contact my insurance. I contact my co-pay assistance fund. I get green lighted all the way around and now I am good to go.

The next step is to go to an out patient center someplace in the Valley so that I can take my first pill and then be monitored for six hours to make sure my heart doesn’t stop beating or some damn thing. Chances are one in a zillion, but I guess they want to be sure.

I trust my new Avenger doctor and her recommendations. But let us please, collectively keep our fingers crossed that this works.The next options are even crazier ~ but you can bet I’ll try them if this one doesn’t pan out!emmapeel

 

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!

Lumps and Grinds

I am generally a pretty sunny person, and don’t like to spend a bunch of time lamenting my lot in life. Overall my lot includes beautiful children, an amazing and loving family, fantastic friends and the gift of a sense of humor (thanks, Mom). But every now and again, something just pisses me off, so allow me this rant.

Eleven years ago, when I was first diagnosed with MS, there were 3 therapies available commonly referred to as the ABC drugs: Avonex, Betaseron and Copaxone. The choices between them were wonderful: weekly injections or every other day injections or daily injections. Golly – how to choose? The first two apparently can cause such bad flu-like symptoms that after injecting, you can be down for the count for days. You’re kidding me, right? I didn’t think that was my best choice. But a daily injection? Ugh.

Fortunately, (I use the term rather tongue in cheek here…) Liza was giving herself up to 6 million insulin injections per day for her diabetes, so I was chagrined at what a pussy I was being; and we were also rich in sharpies disposal containers.

During this time we also had a cat named Lila (sister of the demon Cleo) who got sick and the vet informed me the she would require daily injections. I didn’t think so. She got exactly ONE if you take my meaning….

Anyways….so I chose the daily injectable of Copaxone, as the side effects seemed minimal. My doctor at that time was a Dr. K who worked at USC. He had been one of the early champions of Copaxone (I believe he was one of the developers of it (certainly he spearheaded up clinical trials of it) so he of course agreed with my choice. (Dr. K was great ~ he once told me after seeing my MRI that yes, in fact, I had brain rot. We shared a similar sense of humor…).

When you begin a new therapy that costs over $4,000 per month, it comes with a nurse who makes a house call. She showed me how to wash my hands, open an alcohol swab and how to mix the alchemy that was my shot. When I started this therapy, I used to have to mix up my own potion. I had little vials of stuff that I’d measure out and swirl around until the concoction was ready, and then I’d draw up my own syringe. Egad. It was like high school chemistry all over again. Oddly enough, I flew overseas one time with this make shift lab in my carry on, and nary a word was spoken through security. Must have been pre-Sept 11.

The nurse showed up with support materials: a little stick figure picture detailing the 7 points of entry: left arm, right arm, left thigh, right thigh, left hip, right hip, belly; a little calendar to put on the refrigerator to remind me of which location on which day; and an 800 number for support.

All good, let’s go. I took the first shot in my right arm. H-O-L-Y F-U-C-K. Big giant alligator tears streamed down my face ~ it HURT. In trying to describe it later to my sister I called it Bruise Juice. There was no other way to describe it. You know how when you’ve bruised yourself and you inadvertently lean on the bruise you get a very distinct and unique wave of pain that spreads up to your ears? Imagine, if possible, that feeling being injected into your body. It was the worst.

The capacity of the human body to adapt is nothing short of amazing. In a relatively short period of time the bruise juice feeling subsided, I scrapped the support items and I was jabbing away like an old pro. My daily grind, day in and day out. And then, about 3,500 shots into it, a new phenomenon set in. Scar tissue. I guess it’s inevitable that you just can’t keep stabbing ourself over and over and expect the tissue to remain soft and supple, but it got so hard the needle could no longer penetrate. And I got dents. Dents in my arms, thighs, hips and belly.

Since no piece of cake is complete without a cherry on top, I added menopause into this olio of battered flesh. This change in hormones almost always includes a healthy helping of unanticipated and rapid weight gain, particularly in the middle. I am no exception. So here I am: a pair of skinny legs with dented thighs; a set of skinny arms (I don’t even have flapping underarms) also deeply dented; some good cratered curves on top and a nice comfy and lumpy belly. Pretty.

Now that you have that fabulous imagine seared into your mind, let me explain the reason for the rant. I stopped injecting in the legs and arms as they don’t have the…let’s call it the traction, that the hips and belly do. Now I’m down to 3 locations and they have taken the brunt of the over 4,000 shots I’ve given myself over the last 11 years. This hardly seems fair, so the other day I decided to give the leg a shot. It got all swollen and creepy and I had to run over to a friend who’s a doctor to look at it and then ice it for an hour. So, next up, I tried the arm. Son of a gun if that old Bruise Juice feeling didn’t come burning back through, AND I couldn’t lift my arm for 3 hours.

That is what pissed me off and prompted this rant. We all have to take our lumps in life and I know it as well as anyone, but sometimes it feels really good to just get mad and vent. I feel better now, so I’m going to go back to Googling the new oral meds that are coming out ~ I hope to heaven they are not Bruise Juice pills.

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!

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.


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.

 

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!