Dermatomyositis

DERMATOMYOSITIS IN A NUTSHELL: Your body's own immune system begins to attack and destroy your muscles, causing them to atrophy (waste away). It does not make any difference if you're in good physical shape or not, your muscles will shrivel and disappear even though you are still using them.

Personal Note: Just leave it to me to take a woman's ultimate fantasy (self thinning thighs) and mess it all up!

In November of 2006, while undergoing the Taxol portion of my cancer treatments, I noticed a funny little purple splotch on my left ankle. Considering the huge number of side effects caused by my chemotherapy, (I often referred to myself as a walking science experiment) I rolled my eyes and added it to my mental list.

In late spring of 2007, however, I noticed that the same little splotch had spread slightly across the top of my foot (hmmmm). Late summer and early fall of 2007 my focus was on reconstructive microsurgery (see my PinkThink lens for more information there). Other than noting that the same rash had now materialized on my right foot, I paid little attention to it as I was now completely focused on my recovery which was huge (two separate procedures totaling over 13 hours of surgery can really wear a gal out, you know).

By January 2008 the rash had begun working its way around the front of my foot and started creeping up my shin. I asked my Oncologist about it, but as it appeared to be a skin condition he was unsure and suggested I consult a dermatologist if it bothered me. Since it didn't itch or hurt and (other than being ugly), really didn't bother me at all I thought I'd just keep an eye on it in case it DID become a problem. This turned out to be a very poor decision on my part.

Spring brought bouts of fatigue and some breathing difficulties, which became troublesome enough to warrant a visit to our family doctor. I was diagnosed with mild Asthma and prescribed an inhaler. The inhaler helped with the breathing, but only marginally. (I figured out later it was the steroid in there that was helping).

Summer came along and with it was difficulty swallowing and trouble with indigestion. By the time August rolled around the fatigue had increased drastically and was accompanied by random muscle pain and weakness (one minute I'm be-bopping along and the next my legs would be like jello and I suddenly had to sit down). It was at this point I started to wonder if I had something quite a bit bigger than asthma; I started Googling my symptoms and came up with things like Chronic Fatigue and Fybromyalgia. Another trip to the family doctor where I gave him a rundown of my symptoms, this time asking about the rash. After inspecting my ankles, he hesitantly proposed the possibility of Dermatomyositis (which he had never seen) and promptly referred me to a Dermatologist for further evaluation.

The first available appointment with the Dermatologist was in the Fall, which meant more waiting. As one who has always zipped along at 90 miles an hour, I now found myself becoming extremely frustrated with my progressively decreasing pace. The visit to the Dermatologist yielded another mention of Dermatomyositis as a diagnosis (it was in her medical book :o) and another referral, this time to a Rheumatologist.

In November of 2008 I was officially diagnosed with Dermatomyositis ~ exactly two years after having noticed that small purple splotch on my ankle. I spent some time kicking myself right about here for not having gone straight to the Dermatologist way back when, but who ever thought a funny little rash would mean something so serious? Not me.

Thought for the day:

It took two years from first noticed to diagnosis; that's a mighty long time.

Bloodwork
Creatine kinase (CK) is a substance made by injured muscles, this blood test is used to check for elevated levels as confirmation of the initial diagnosis.

EMG (Electromyography)
This was the first official test for Dermatomyositis ordered. The test measures the electrical activity of muscles at rest and during contraction. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways. While this was not the most fun I'd ever had, it wasn't all that bad (except when he missed the muscle and hit a nerve with his nice long needle, but we aren't going to talk about that).

NOT What I Wanted for Christmas
Ordinarily, treatment is begun after the muscle biopsy, which is done to determine the extent of muscle damage. Treatment started before the biopsy is done can sometimes skew the results. Unfortunately, my disease seemed to snowball to the degree that by Christmas Eve I was no longer able to walk at all. The Lord blessed me with a marvelous physician, however, who personally met me in his office (which was closed for the holidays) and decided to begin treatment immediately. It was determined that as long as the biopsy was done within 2 weeks, the results would be valid.

Party Hearty with a Muscle Biopsy
Now I may not have planned to spend my New Years Eve holiday at some big party, but I didn't exactly expect to spend it at a hospital either (yep, that's when I had my muscle biopsy). Other than my friend forgetting my bag of clothes in the room when we went off to surgery, it was rather uneventful. Of course I thought I'd rewrite history a bit when relating my New Years activities afterward, so here's my new and improved [highly fictitious] version: "I went to this monster party at this place (hospital), got seriously wasted on some primo drugs (like anesthesia) and don't remember anything that happened, but I woke up without my clothes (hee :o) Now doesn't it sound much more interesting that way?

Thought for the Day:

Sometimes the cure is worse than the disease [or at lease a close second].

The burning question: I had a student ask me not long ago why on earth I would agree to take the steroid treatments (we were talking about what had "happened" to my face; it was terribly swollen). She avowed she would never have agreed to take them and remained adamant; right up until I explained it was either the steroids or life in a wheelchair. Makes it pretty much a no-brainer when you put it that way, doesn't it?

Not exactly a walk in the park (or a ride either)
I really thought I had covered the superweird when it came to side effects during my cancer treatments, but apparently I was mistaken. My initial dose of Prednisone was set at 60mg per day. This resulted in a roller coaster ride of epic emotional proportions (basically, it makes you feel as though you are going off the deep end). I would liken it to drinking about 247 cups of coffee and then watching some horribly depressing movie...

I think I lasted about a month at that dosage - emoting all over everywhere - before I hollered "Uncle". Mercifully, my doctor cut my dosage in half. Still not a walk in the park, but much more tolerable. Of course he also substituted another medicine that had huge warnings all over the label that it was known to cause cancer (sigh).

A Stranger in the Mirror
Have you ever seen a child in treatment for Leukemia or Cancer with their cute little chipmunk cheeks? Up until now, I had always assumed it was either baby fat or weight gain due to their inability to exercise. I have [unfortunately] been enlightened: medically speaking, this severe swelling is referred to as "Mooning of the face" and it is a direct result of high doses of steroids over time. Personally, I call it adding insult to injury. I stopped wearing blush when I could no longer locate my cheekbones. I put away the lipstick when I noticed I was starting to resemble a 400 pound Kewpie Doll. It even affected my eyes, to the extent that my glasses would no longer sit correctly on the bridge of my nose due to the swelling. The final insult? Pain. In general, sure, but also just to smile at someone or express any emotion at all on my face became terribly painful. Laughter? Forget it.

I think it's safe to say I am definitely NOT having fun yet, although the mystery of what I would look like if I were a Sumo Wrestler has now been solved :oP

Thought for the Day:

It is a sad state of affairs when your driver's license photo looks better than you do.

Thought for the Day:

If I had to come up with something rare, why couldn't it be a winning lottery ticket?

CANCER 1 in 3 people (lifetime)

ASTHMA 1 in 15 people (NIAID)

ALZHEIMERS 1 in 68 people (Wrongdiagnosis.com)

MULTIPLE SCLEROSIS (MS) 1 in 700 (NIAID)

LIGHTNING STRIKE: HOUSE 1 in 200 each year

PARKINSONS DISEASE 1 in 272 (Wrongdiagnosis.com)

LUPUS 1 in 2,000 (NIAID)

CAR CRASHES KILL 1 in 5,000

*DERMATOMYOSITIS 1 in 20,000 *

LIGHTNING STRIKE: PERSON 1 in 280,000

The odds of being killed in a PLANE CRASH are 1 in 11 million

Well, here's where the winning lottery ticket landed (so I guess that pretty much answers my question, doesn't it? :o)

Well, the disease is currently in remission and I am walking again (up to 2 miles a day on the treadmill). It sure is at a much slower pace than I'm used to, though. I am gradually decreasing the Prednisone and working my way down to a maintenance dose, which I will have to take for awhile.

I haven't yet figured out what the lesson is in all of this, but I will. It is unlikely that I will return to the shape I was in before this disease, as muscles do not regenerate - we'll see. In the meantime, there are still plenty of things in my life to be thankful for: a merciful God, a loving family (the two legged and the four legged members), and many wonderful friends (both online and off). If nothing else, I do have a much deeper understanding of the cliche, "If you don't have your health, you don't have anything." Boy, you can say that again! :o)