Hang on to your hats...

I'm on The Juice.




I have been dragging for months and feeling like death on toast.

(Like Death on Toast, a Play after Pirandello in One Act:

Marie: Waiter, I would like some toast please, with marmalade.
Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death.
Marie: But I don’t care for Death on Toast.
Waiter: I’m sorry madam.
Marie: I really, really don’t like it.
Waiter: I am very sorry madam, it’s all we have.
Marie: (pouting) I hate Death on Toast.
Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade.
Marie: It is all my fault, isn’t it?
Waiter: I’m sorry madam, yes, it is.
Marie: Waiter, I would like some toast please, with Death.

The End )

My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.

Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".

And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.

Bingo.

Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.

I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.

At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.

Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.

When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?

While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.

By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.

So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.

Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.

Commonplace Medical Care: Good Enough?

Once a month I go to an oncologist’s infusion center to be given a medicine called Tysabri. I have no idea where they got this ridiculous name, because it has no resemblance to the generic, Natalizumab. I will readily admit Tysabri is better than Natalizumab. But they are both pretty darn bad.

Tysabri is a relatively new treatment for Multiple Sclerosis. It came out in 2004 with a lot of promise. Studies were showing it slowed the progression of MS by 68% over a placebo. That is pretty awesome. There was one tiny little hiccup. Three people on the drug developed an opportunistic infection called progressive multifocal leukoencephalopathy or PML. PML is a brain infection that is almost always fatal. It was for these three people. And now it is up to eight.

'Fatal' is one of those funny things that you just can’t reverse. Even though they didn’t have to, Biogen, the company that manufactures Tysabri, pulled it off the market. People who had been on it freaked out. They were better on it. And now it was gone.

After a year of research and damage control, Biogen re-introduced Tysabri. With a ton of restrictions. Because of the potential of a fatal illness, doctors were to only consider Tysabri as a last resort drug. Only if a patient could not tolerate or did not do well on the other MS therapies would they go on Tysabri (I fall into this fun category). They had to be registered with the Biogen Tysabri program. They had to complete a questionnaire every time they had an infusion, to determine if they had been on anything that might have suppressed their immune system even more in combination with the Tysabri. These questions were to be asked before the infusion. The infusion, through an intravenous line, was to be every 28 days. There should not be a gap in the treatment schedule. People who were on Tysabri when it was pulled and then went back on after it’s reintroduction were having allergic reactions. It appeared this was something you could not be casual about.

So this is what is on my mind once a month when I go to the oncologist’s office for my infusion. Opportunistic infections. Compromised immune systems. Death.

Ha ha. I’m just kidding!! lol I only think about death.

I went for my Tysabri infusion yesterday, to the same oncologist’s office I have gone to for two years. I really like this office. The first infusion center I went to was also an oncologist’s. They treated me like a cancer patient, doing an exam and blood work at each visit. I questioned the need and was told “This is the way we do it." I objected and was told it was their way or the highway.

Hello highway.

I love the place I go to now. Even though they have kept some of that 'chemo protocol' that drives me nuts, they are good natured and flexible. As opposed to obnoxious and bullying at the first place. The doctor I see (albeit unnecessarily) is very friendly and pleasant and we always have a nice chat about all sorts of things. I love the nurses, who are really, really kind to all the patients. They are just wonderful in a million ways.

On to my issue.

I have been feeling and looking like absolute crap since my shoulder surgery 6 weeks ago. My body has puffed up like the Michelin Man. My legs and feet especially are bad, with my feet oozing out of the straps of my sandals. I'm in constant pain. But no one knows why this has happened. Or what to do about it.

My Physical Therapist is awesome, practically standing on her head trying to come up with a modality that will make a difference. But she doesn’t know what’s wrong. My surgeon? Well, he is Dr. Wonderful, so Be Still My Heart. But he is starting to look just the teeniest bit frustrated that I am not better. When I don’t get better, I have to keep coming back. Keep coming back? That is a failure. In some way, some part of the process has failed and who wants that in their face? He suggested it is an immune response that is causing so much pain. I am totally on board for blaming my body. I specialize in self-loathing. But that is a guess and a guess is the best he can do. He did load me up with pain killers, but they barely touch the pain. I am probably habituated to them now.

But back to the infusion. So I am already feeling like crap. At every appointment I have to get my blood drawn because Tysabri has also been found to be associated with liver damage. (Malignant melanoma too, woo hoo!) The phlebotomist is a very pleasant woman who has long, claw-like acrylic nails, otherwise known as Bacteria R Us. She either doesn’t wear gloves or keeps the same single glove on that she had when I come in the room, from the last patient. I say nothing, because that is the way I was raised. So she is a major danger to me, an immunocompromised patient, and all the other fragile chemo patients she sees ever day.

But I don’t want to get her in trouble. Or make her mad at me. So I keep my mouth shut.

I drag myself into the treatment room and climb into a recliner that is so big my feet don’t reach the floor. It is a large room, probably 50 by 30 feet, with a glass wall divider. There are six recliners on one side of the wall (the Quiet Side) and about 12 on the other side, where there is a television that is always blaring an unutterably bad movie. The ‘Quiet Side’ is a joke. Everyone has someone with them and, naturally, they talk to each other. Because everyone is talking, they have to raise their voices. Some are talking on cell phones. There is a constant cacophony.

One of the nurses comes over to start my IV. No blown veins, so only one stick today. Yay! We chat, she hangs a bag of Benadryl and within about five minutes I am dozing uneasily. The Tysabri gets hung while I am snoozing.

Funny thing, I never remember them asking me the questions on the questionnaire that are supposed to be asked before the Tysabri is given. Hmmmm…

I wake up after about an hour. I haven’t had any lunch, so I eat the blueberry muffin I brought with me. Within a half an hour, I start to feel kind of queasy. A requirement of the process is that my blood pressure is to be taken before, during and after the infusion. Yesterday it starts at 134/84; next one is 145/86; the final is 160/90. I ask her if I should be worried. What I really mean is “Could you please call an ambulance?” The nurse says, wow, that is really high! But that is it. I tell her I feel nauseous. She stops in her tracks. Oh good, someone is going to take care of me! She narrows her eyes and says what do you mean.

And I say “I think I ate my blueberry muffin too fast.” Because God forbid I inconvenience somebody by dying on their shift. She bounces off, back to the six million other things that need her attention. I am thinking there is a reason my blood pressure is supposed to be taken. Like maybe a change in BP is a danger sign? But that doesn’t seem to occur to anyone else.


These are people who are really, really good. They work hard. They never stop moving. They are nice. They are funny. I like them. But I am so lost as a patient, I feel I don’t exist. My body is not doing what it is supposed to be doing, it’s not healing and it’s doing weird stuff, but this isn’t really anyone’s priority. Protocols are left by the wayside. A potential side effect means the staff gets out late. Blood pressure creeping steadily up to dangerous levels? It’s brushed off as being caused by the pain in my arm. Because anything else means extra work for people who are already overworked.

The worst part is, this is not a solitary occurrence. This is an epidemic. Everyone you know with a chronic illness could probably tell a similar story.

It is hard enough being sick and in pain in the first place. It was not at the top of my career choices, but it is equivalent to a full time job. It is almost impossible to advocate for yourself when you are feeling really rotten. And people who do advocate for themselves? They are considered rude pains in the ass.

Sigh.

I don’t know what the solution is. Besides learning to speak up in a way that does not create defensiveness and animosity on the other side. But is that possible? Did I ever tell you that I did that once before with a doctor’s office? Their response: a certified letter saying don’t come back.

When I first started, I asked Dr. H how long I would be on Tysabri. He said “Until something better comes along.” So for now, I will just quietly haul myself in every 28 days. I don’t want to rock the boat. I don’t want to get a certified letter. I am just too darn sick to battle. I don’t want anyone who is taking care of me to be mad at me. I am already too defenseless. That is a kind of vulnerability I cannot withstand.

A Milestone

So. This is my 100th post. I have been racking my brain for something witty, poignant, wise and something that will finally get those folks at the We Publish Bestsellers And Will Make You Rich And Famous Forever Publishing House to notice me and make me rich and famous forever. Or maybe to get Oprah to notice my pathetic yet brave existence and give me lots of cool free stuff for being a pathetic yet brave inspiration. Sniff.

Alas. Nothing.

Instead I had a week where Dr. Wonderful told me I probably had to have shoulder surgery again to fix the first shoulder surgery (although he did look wonderful telling me :)).

I had to have a test that involved sticking a six inch long needle into my shoulder joint.

Dr. H. told me he thinks I have a form of MS that is really really bad and will cause me to be blind and paralyzed. Oh, and dead. I have to have a blood test for this possible diagnosis and have been dragging my feet, being of the Ignorance Is Bliss school of thought.

I had my monthly Tysabri infusion on Wednesday, one stick for blood work, two sticks to start an IV (missed on the first; oops sorry about that).

Had an MRI of the brain to track MS progression yesterday. Another stick for IV contrast. Have an MRI of the spine tomorrow. Another stick for IV contrast. Then…I think that’s it for bodily assaults for at least the next two weeks.

My parent’s continue to be in crisis and I continue to be the family pariah amongst my siblings who rejected out of hand my plan for a geriatric social worker to assist us.

Consequences of being out of work for almost a year continue to dog me.

I am still fat.

However, (in my life there is always a ‘however’, otherwise I wouldn’t still be here) I had a perfect cup of tea this morning while I watched the rain.

I have friends who endlessly affirm me and their love for me.

I have children who, despite our issues, I adore. And who, I suspect, have some affection for me.

I have this incredible medium of the Internet, where I have made so many new friends and have been exposed to such fascinating lives.

I sit cross legged in bed with the newspaper, cozy on this gloomy day under a favorite soft, worn patchwork quilt. My knitting is piled beside me, along with skeins of gorgeous hand spun wool I found on Etsy. My bedroom is exactly how I want it, old oak dressers, floral linens, buttery yellow walls, books everywhere. My little dog snuggles against me and heaves an enormously contented sigh.

Life is good.

On Being Unemployed

I have been out of work for ten months now. It has been an ordeal.

Not working means not having money for things like…paying the bills.

I’ll bet you thought I was going to say something like not having money for going to the movies or buying books or going out to dinner with friends. Well, that is correct. All those things are out as well. Things that were part of my life before. So now I have this idea that I am being punished for having been so shallow and self-indulgent, because I know it was a privilege to have those things that I never gave a second thought to. I irrationally think maybe I’m being penalized for taking my luxuries for granted.

No, more than anything, being unemployed means you cannot pay the bills.

It means you no longer even answer the phone if you don’t recognize the caller ID.

It means when the plumber, the nicest man in the world who has been doing work for you for years, fixes your disgusting outflow pipe you ask him if you can pay him the following week. But then you forget because some new disaster has arisen. And he sheepishly shows up at your back door one day and at first you are confused and think he has stopped by to say hi which would be very odd and then you are horrified to remember you never paid the man and you write a check for $240 even though you don’t have it.

It means eating almond butter for breakfast, lunch and dinner some days. But that is ok, because you like almond butter. It is full of protein and lots of lovely fat.

It means going to the neurologist, feeling so, so sick, and having a GREAT BIG NOTE on your chart that you have to see the billing person before you see the doctor. The billing person, we’ll call her Mean Petty Little Cow, is a 20-something snot with a flat affect and a personality disorder. She treats you as if you have just robbed the Bank of England with a machine gun and taken out 20 people because you have a balance of $115. She sneers (literally, I am not kidding) when you offer to pay half and lectures you on financial responsibility. This despite the fact you spoke to someone else the week before offering to make payments and they said that was fine. And then to add to the humiliation, when you finally are allowed to see the doctor, you can’t stop crying.

It means owing everyone you see money.

It means not being able to pay your mortgage and watching your beloved home slip further and further out of your grasp.

It means holding your breath for so long you almost forget how to breathe.

I’ve sent out hundreds of resumes. And it’s a good resume. I have a Master’s Degree and years of experience. But I have had six interviews in ten months and no offers.

After months of worrying, sleepless nights and enough nervous energy to use up a bazillion calories (although I still stay fat), all of a sudden one day the worrying stops. It could be the decades of therapy. It could be the Cymbalta. But it also could be that I am just incapable of worrying for one more second about something I have absolutely no control over. I am simply worried out.

Just because I am not worrying [as much – I will never completely stop worrying, sheesh] does not mean I don’t care. It mostly means I have stopped bursting into tears in public. I still think about my dire financial state almost all the time.

At physical therapy the other day I was doing leg curls designed to strengthen my legs. My mind was focused, as usual, on my problems. So this was me:

Legs up: Can’t pay the mortgage.
Legs down: What am I going to do?
Legs up: Can’t pay the mortgage.
Legs down: What am I going to do?

It was quite the depressing little rhythm I had going. All the while I am idly looking around the room, watching the other patients, looking out the window, looking at my feet going up and down, when my eyes rested on this:



And I thought, why on earth is there a bottle that says “PRAYER” at physical therapy? Spray prayer? Is it a joke? And then the light bulb came on. The bottle actually said “SPRAYER” but was turned so the “S” wasn’t showing.



So I took it as a sign. This is the action I need to take. There are no easy answers or solutions. Nothing is going to fall into my lap. Therefore, I have been praying more. Not for specific corporeal things, but for support and direction and strength and courage. I think we all need these things the most. Everything else can slip into place with those gifts.

Good thing the bottle didn’t say “TAKE THE GAS PIPE”.

Mixed Blessings

In the past, when I have been on IV steroids, the Solumedrol came in this self contained, pre-mixed pump.

I had my port put in and then each day I just flushed it, hooked up my little ball and when it was finished, flushed it again.

Easy peasy.

On Wednesday, when Dr. H. ordered the IV for me, his secretary asked if I would be interested in trying this new company. They were trying to build business in our area and they were very nice. So I said sure.

Big mistake.

The next morning the new place called to say everything was set up and the pharmacist would call me in a little while to go over the order and arrange the nurse’s visit to start my IV.

The pharmacist calls and asks me the usual, allergies, other meds, etc., and then says my medicine and supplies will be delivered by 3 pm with everything I needed to mix the Solumedrol.

Mix?

So I say to her “Mix? I usually get a pre-mixed ball pump.” “Well we don’t use that, you will mix the medicine and hang it.”

Hang it?

I could put the ball in my pocket and walk around with it, not be tethered to an IV pole. But that is exactly what I ended up being.

The nurse came that evening. She ended up sticking me FOUR times before we had a patent port. Each of the others infiltrated. This had never happened before. She was so, so nice, but it was frustrating to be stuck so many times.

Then she showed me how to mix and hang the medicine. It was a million ridiculous steps. Especially for someone with weak, numb hands!

1) Pop the Solumedrol bottle to mix/reconstitute it.
2) Let it sit for the powder to dissolve.
3) After it is dissolved, draw it up into a syringe and inject it into the bag of Saline.
4) Attach the tubing and prime it by allowing the medicine to go all the way to the end, so I don’t end up with 10 cc’s of air preceding my infusion.

5) Clamp everything until I am ready to attach it.
6) Flush my port with Saline.
7) Attach the IV tubing.
8) Set the tubing control to 125.
9) Open the clamps
10) Sit in one place next to the pole for an hour ( because if I move the pole around, the infusion stops running).
11) When it is over, clamp everything again.
12) Detach the tubing.
13) Flush my port with Saline, then Heparin.
14) Clamp my port.
15) The end.

What year is this?!?!

Then, when I went to administer my second infusion, I find my port was leaking. I called the nurse and she said try to tighten the connection. The connection that was under a ton of tape and a piece of Tegaderm (a small sheet of protective plastic). Try to tighten it with one hand.

Guess what? Oh, you are so smart!! It didn’t work. The IV wouldn’t infuse and I had to pull the port. Which meant I was going to need another one inserted.

Oy vey.

The same very, very nice nurse came back. We picked a lovely, plump vein in my right hand. In went the needle. In didn’t go the little tube that would deliver the medicine. She kept trying, very gently, but I knew just by looking at it, it wasn’t going to work and I was going to have to get stuck AGAIN. After about five minutes she apologized and gave up.

Stick number SIX took.

Because this has turned into such a freaking ordeal, I developed a nurturing routine for myself. I might as well enjoy myself instead of getting totally pissed off.

So my set up is as follows:

My favorite scented candle.

My nightstand with the phone, books, pictures of

my beloved children and my beloved grandmother,

along with flowers from someone I love very much.

And a lovely high calorie drink. Because I deserve it.

There’s a lot of love on my nightstand.

My bed where I will relax and put my feet up
with tons of pillows, my knitting, my laptop
and, of course, Bella.





On the plus side, within one day my legs felt as strong as if I were normal. My back pain has disappeared. My other symptoms, which I guarantee you would rather not hear about, are diminishing.

On the down side, the first night I couldn’t get to sleep until 2 am. And then I woke up at 2:45 am. And could NOT get back to sleep. Forty five minutes of sleep in 48 hours. Woo hoo.

This is yet another MS adventure. What can I say?

The Dreaded Steroids

I am having a flare up of Transverse Myelitis, which was the condition I developed that led to my diagnosis of MS.

Ugh, what a bummer.

I am one of the lucky ones. Although TM initially paralyzed me, I responded to IV steroids and got better. Better-ish. It left me with lots of deficits, dysfunction, numbness and weakness. But some people never recover at all and are crippled forever. Some even need to be on respirators.

This scary stuff is caused by lesions on the spinal cord that strip the nerve cells of their protective coating, the myelin. It’s called demyelinating. Your level of illness depends on where your lesions are. My biggest one (yes indeed, I have an entire collection back there) is on my cervical spinal cord. That causes just sooooo many things to malfunction. Ahhh well.

An intravenous steroid, in this case Solumedrol (IVSM), is the thing that will calm the lesion down and make me feel better. But it comes with a price.

First, after a few days of steroids, I am, let’s see, how can I put it? A raving lunatic. No sleep, non-stop talking, non-stop activity. A VERY clean house. Let me tell you, this is not fun to live with. The one child (a 22 year old CHILD; oy) who still lives with me (who I am trying to pry out with a crowbar; does anyone want her?) just rolls her eyes. This will be my fifth course of IVSM in three years, so she is used to it by now.

Then there is the physical stuff. A hep lock in my arm for days, no showering, nasty taste in your mouth, potential kidney damage, potential bone damage, potential diabetes, aching all over like you have the flu and feeling like you have been hit with a truck when it is done. The first time I was on IVSM my blood sugar went so high I was on insulin for three weeks. Some people develop a ravenous appetite. Amazingly, I don’t. I actually lose my appetite. Cool.

But it usually does help, so there is that.

Maybe, as I am up all hours with steroid induced energy, I will write dozens of brilliant and witty posts for my blog!!! Now that is something to look forward to.

This is a short video related to Project Restore at Johns Hopkins, which is doing research to develop a cure for demyelinating diseases like Transverse Myelitis and Multiple Sclerosis. Alysse describes exactly what it is like to develop TM and the losses we experience when we have it.

Getting Better

I am so grateful for all the kind words of comfort and encouragement that people have posted here. Boy, it has really been a tough week!

I am feeling better every day, but not back to what passes as normal for me yet. I had thought of going to the gym today, but after doing housework this morning for an hour I felt as though I had been beaten with a club. So I gave it a pass.

The steroids are doing their job quite nicely and I am totally wired, sleepless for three nights and already put on three pounds. I am very ambitious but don’t have the strength to follow through on anything. So I am spending most of my time trying to do small projects – sorting through books, organizing my den and papers, throwing out ruthlessly. Ruthlessly for me is about 25% of what it would be for anyone else. :) I actually have gotten a lot accomplished.

Keeping busy helps with missing Corrie.

My brother and sister-in-law sent me a gentle, poignant essay about losing a pet. It ends with this wonderful advice.

Remember, if a dog was the teacher you would learn things like:

* When loved ones come home, always run to greet them.
* Never pass up the opportunity to go for a joyride.
* Allow the experience of fresh air and the wind in your face to be pure ecstasy.
* Take naps.
* Stretch before rising.
* Run, romp, and play daily.
* Thrive on attention and let people touch you.
* Avoid biting when a simple growl will do.
* On warm days, stop to lie on your back on the grass.
* On hot days, drink lots of water and lie under a shady tree.
* When you're happy, dance around and wag your entire body.
* Delight in the simple joy of a long walk.
* Eat with gusto and enthusiasm. Stop when you have had enough.
* When someone is having a bad day, be silent, sit close by and nuzzle them gently.
* Be loyal. Never pretend to be something you're not.
* If what you want lies buried, dig until you find it.

And my brother added this lovely comment, “She just moved from one dog heaven to another.” How sweet is that?!?

Thanks Ed and Mary! Thanks everyone!

Setback

Once a month, I go to an infusion center and receive a medicine intravenously that helps slow the progression of my MS. It is called Tysabri and so far has been working pretty well, as I haven’t had any relapses in almost a year.

One of the downsides, though, is that it lowers my immune system. And because of that, this week I came down with shingles. This is a very painful viral infection that is particularly concerning in a person who is immunosuppressed – someone like me.

So I am now on a cocktail of antiviral medication, high doses of neurontin and prednisone. My neurologist is calling this “aggressive” treatment. It’s a little scary to feel this sick.

The medicines I am on all cause weight gain. My doctor was sympathetic when I mentioned this, but he was very grave about how serious this illness can be for me.

On the plus side, I have no appetite.

While I am upset that this will affect my weight loss, I am trying to remember the fact that the purpose of this blog is to focus on taking care of ourselves. So I am going to do just that, take my medicine, rest and ignore the scale for the time being.

There's No Justice In This World

In addition to being old and fat, I have MS. Most of my brain is in complete denial about this. Because it is ridiculous to think of myself, a normal, ordinary person with here-to-fore peasant-like good health, as having a serious chronic disease.

Every time I go to the neurologist, I futilely ask if perhaps there has been some mistake. But he doesn’t mince words: “Oh, you definitely have MS” he says cheerfully in his cute English accent.

There is nothing good about having MS. Absolutely nothing. Some people say, “I have MS, but MS doesn’t have me”. This is rationalization that borders on the delusional. The MS tentacles insinuate themselves into every aspect of your life: mobility, thinking, elimination, stamina, sexuality, everything. When you have MS, your life of doing things without a thought is over.

Pain is part of the MS package. Pain from damaged nerves that does not respond to conventional analgesics. I have been crippled with neck, back, hip and leg pain for weeks. Nothing was helping. My neurologist just prescribed Neurontin, which is to treat neurogenic pain. I finally began to get some relief.

But wait, there’s more!! Because what do I find in the drug information about Neurontin? It causes WEIGHT GAIN. That is what every info sheet says: weight gain. Weight gain, weight gain, WEIGHT GAIN AND WE DO MEAN YOU MARIE YOU BIG FAT PIG!!!!!!

And according to those who know, we’re not just talking a few pounds. We’re talking up to 30 pounds!

God help me, I would rather be in pain than continue to be fat. How sick is that? But I will give the med a try and see what happens.