Saturday, November 1, 2008

My Journey, Part 4

And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.

Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.

While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.

About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.

The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.

Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.

THE OTHER SHOE DROPS

I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.

Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.

He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”

There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.

In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.

The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.

I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.

So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.

My friends tell me if anyone can handle this, it would be me.

Time will tell.

18 comments:

Dan Brantley said...

Wow.
What a story. I know you wish it was a work of fiction.

Marie said...

What a nice thing to say Dan! Thanks.

I never thought of it that way, but you're right, I do wish it was fiction. Sometimes I feel like it is because even with everything, I STILL can't believe it! It just seems preposterous to me, someone who has been healthy my whole life.

I really would like to publish this, but I don't know where to submit it. I have to give it some thought.

Elle said...

Wow, Marie! This is a compelling and incredible journey you're on. I hope for the best for you.
It's amazing to me how much we must fight for good health care, even to the point of challenging our doctors at every turn. Thank you for sharing your struggle.

papercages said...

I was transfixed by your story. I want to be able to "do" something but of course that isn't possible. My heart goes out to you Marie, not with pity, but empathy.

Marie said...

Thank you Elle and Tricia. I am so grateful for your comments. That connection is what this is all about.

I am also grateful to both of you for sharing your stories and your talent. :)

Kevin said...

Marie,
I loved the way you told your story..I wish I were able to write as eloquently as you...you have way with your words..
Now, it is shame that we (tmr's) have had to come together the way we did, but it is nice to "meet" so many wonderful people.

Thanks for visiting my blog..I appreciate that...it helps my mental state of mind sometimes, to be able to write things down.

I know there are a few online support groups out there (and I think I am a member of all of them..lol) but I am part of one that I really like..it is fairly new but growing everyday..
I would like to invite you to visit and see what you think..
http://transversemyelitis.ning.com/

Thanks again for visiting my blog..
I'll be following yours..
Take care..
Kevin
http://dealingwithtm.blogspot.com/

Marie said...

Kevin, thanks so much for your kind words. I am so glad you are here. And, again, I'm so very sorry you have any experience with TM.

Thanks for the support group address. I have belonged to the TM message board since right after I first got sick, but I hardly ever go on it.

I will check the ning out. :)

Jane Turley said...

Marie,

What is with Doctors? They really need more training in how to communicate with people. Personally, I find it so much easier to deal with the known rather than the unknown; at least you can rationalize it. But generally the doctors I've had dealings with tend to leave out anything that might provoke too many questions. Maybe some people prefer ignorance but not me; we all have a right to know what lies ahead for us.

I was moved by your story Marie because I know how much you love life and how much more you have to give and for MS to restrict you in that is a cruel, cruel blow. As you know I've had a rotten time lately so all I can say is make the best of every single day because none of us ever knows what lies around the corner.

I also look like a gnome so I hope that makes you feel better! And I've been stuffing myself silly...

BTW... I really think your story is just the right material for Reader's Digest. Why don't you give it a shot??

Marie said...

Jane, I don't know what it is with doctors, but most are simply terrible communicators.

I did a paper on doctor/patient communication in graduate school. It is a subject that is taught now more in medical school, but it is not valued as a skill as opposed to clinical skill sets.

I am lucky that I have a great neurologist now, but he is my third! That first one in the hospital was a total ass. The second was kind, but condescending. Dr. H is respectful of my autonomy, which is really rare in a physician. And he has such a cute accent! :)

Making the best of each day is an excellent prescription.

And you do not look like a gnome you nut!! lol Stuff yourself all you need to right now. You need to be good to yourself after all you have been through. Pierce would agree and would be plying you with all sorts of chocolate treats whilst rubbing your feet. :D

And thanks for the publishing encouragement...I will definitely pursue it.

I'm glad you're back my friend. xo

DK said...

Wow, Marie. Crazy. TM and MS are high on my list of Things That Scare the Hell Out of Me. I have several friends with MS, one of whom I used to have to sit with after her Copaxone injections to make sure she didn't die (God, those were awful). She's doing really well these days, thankfully. My cousin, on the other hand, is physically fairly well, but she's gone completely over the edge mentally. It's been frightening to watch. As physically trying as things are for you, I'm glad you still have your faculties.

I had a couple of really sick patients when I was rotating throuh Neurology last year...one with TM as a result, we discovered, of liver cancer (talk about bad to worse), one was a 19 year old with Devick's disease (like super-aggressive MS). It was completely heartbreaking. That rotation also added ALS and myesthenia gravis to the above-mentioned List.

I think...well, you can't teach compassion, or empathy, it's just something you have or you don't. But I also think a lot of docs get overwhelmed and numbed by the amount of tragedy we deal with. Not to mention patient volume, managed care, unrealistic expectation from hospital administrations, or from patients or patients' families...it gets to some people more than others, sometimes in less helpful ways than others. I'm not saying it's okay, I'm just saying, it is what it is.

Hang in there, hon. You'll persevere. Time will, indeed, tell.

Marie said...

Kate, I believe you are definitely one of the exceptions to the poor communicator label I slapped on providers, using too broad a brush I'm afraid. There are many good ones out there. You are one who will never lose her humanity. :)

You are right about getting inured to suffering though, it happens in nursing too, because you have to protect your own psyche. That was a point that came up again and again when I did the research for my paper.

You are also right that compassion can't be taught. Some doctors are just asses because that's what they would have been if they had been accountants.

Yeah, TM scares me to death. When I allow myself to think about the fact that what I really have is spinal cord damage (that is where the bulk of my lesions are), I literally become immobilized. I start with the 'what if's'. What if I can't walk anymore at all, what if I become totally incontinent, what if I end up on a respirator?

I try to remember my therapist's sweet voice reminding me to focus on the here and now. But it is easier said than done.

And don't even get me started on Copaxone!!! What a nightmare! Who invented it, escaped Nazi's?!?! Only a sadist would give you actual instructions to WAIT 15 MINUTES while having papitations and trouble breathing!!!! Your friend was lucky to have you. I went through that ordeal by myself.

I'm happy she is doing well, but I am sorry about your cousin. That scares me to death too. I notice cognitive deficits more and more, but I don't know if it is MS, aging or simply being on overload. I do a lot of word-searching and sometimes just cannot find the word I want to use. Me, who has always cherished my skill at using words.

Thanks for your encouraging words. Thanks for your great input. :)

admin said...

I dropped by to drop a card and saw your MS story. It caught my attention because I am going through almost the exact same thing and have been for a few months. Still working on the diagnosis but the neuro believes that's what I have and am going soon to an MS specialist in a nearby city. (MS) I am also 40.
It's been a wild frustrating ride, but it was nice to read your posts--you have been where I am now and it helped to just read that for a bit.

So, I just wanted to say thanks for sharing your story. It helped me today in more ways than one.

Vickie

Marie said...

Vickie, I am so sorry you are going through this. I hope they find an answer for you SOON and that the answer is something they can make go away. :) That is possible you know, because MS can mimic a whole bunch of really benign things.

However, if it is MS, hang in there. You will be ok. There are lots of new things on the horizon treatment-wise. There is lots of support.

You are in my prayers. Please let me know how you are doing! :)

realitytv said...

Thanks, Marie. Still in limbo...but maybe I"ll know more later this month. Thanks for the prayers, as that's all that keeps me going at the moment! Keeping you in mine as well. ;)

Vickie

Val said...

You have an amazing way with words. I got sucked into your blog and just realized 45 minutes passed! I appreciate your comments on my blog, and I'll be back often to read yours.
You seem to be a witty, bright lady and I look forward to reading more. God bless :)
Val

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