So what is this "itis?"
It's a cousin to Lupus and not very well understood. Very little research has
been done on it, so little is known about what triggers it to start or what
causes it to stop. There is therefore no known cure. What does it do? It is an
autoimmune disorder that attacks the body’s skin and muscles, and I was
diagnosed with it in March of 2010.
Symptoms
I had this crazy rash
thing on my neck and chest that itched, a patch on each hip and my cuticles
were red with blood spots on them, so I finally went to a dermatologist. I
walked into my first visit and my doctor looked at me and said, "You have dermatomyositis."
She looked at all my rashes and indicated that I had all the classic symptoms
including the papules that were forming on my knuckles on my right hand. Then
to my surprise, she also stated that it was associated with cancer in 40-60% of
all cases, so that meant a thorough cancer screening for me.
Coping
So how does Miss
Healthy cope with all of a sudden being diagnosed with a rare autoimmune
disorder? She reflects, studies and takes medication for the first time in her
life. Yes, I was put on prednisone to stop the symptoms from getting worse. And
yes, I tried everything I knew to eliminate the symptoms. My last post in
January of 2010, I was dealing with the symptoms - which I did not understand.
The rash on the back of my neck and chest was like a sunburn that never went
away. It bubbled up, and stayed bubbled up. I was eating healthy, on
antioxidants - maybe too many. I may never know.
Tocopherols
What I do know is that
I was under an extreme amount of stress. I kept hearing in my inner mind that
the problem had to do with tocopherols. I actually did not know what those were
at the time and had to research. Tocopherols are a form of Vitamin E. As it
turns out, most of what I was taking as my healthy supplements had excessive
Vitamin E or tocopherols, a vitamin which you SHOULD NOT take too much of. I
may have over done it, yes, I may have over done it. Booooo. Remember the old
saying, "Everything in moderation..." Well, even healthy
apparently can be toooo healthy.
Medication
Dermatomyositis is
unpredictable. The medication regimen is to start with high dosages of
prednisone and gradually reduce it to a place that was manageable. I have spent
the last 2 1/2 years going up and down on prednisone levels trying to find what
works, or make it last if I was between doctor visits and without insurance. I
was also on Plaquenil, often used to treat malaria or Lupus. The side effects
are a loss of color vision after about 10 years. That literally made me cry. I
would rather go to the dentist than to go to the ophthalmologist with that
knowledge. After my last dose of that, when my skin seemed to be under control,
I didn't get a refill.
Side
Effects
Prednisone is actually
produced in small amounts by the body, so I decided to regulate with that. (Who
is the doctor? lol) I was also supposed to take high dosages of calcium and
Vitamin D. Prednisone reduces calcium in the body and can lead to osteoporosis.
I did take both of those supplements. The problem I kept encountering was upset
stomach, indigestion, diarrhea - all of which I was told I might have. However,
I didn't want more medications to alleviate those problems too. So every now
and then, I would just stop taking everything when my stomach was a mess. I
encountered what is known as the prednisone "crash." Prednisone, as a
steroid, replaces your adrenaline. When your adrenaline is reduced, and you
have no prednisone to keep you working, you "crash" or run out of
energy. I would literally end up sleeping on and off for days. Or, I would hype
myself up on caffeine and sugar until my body regulated.
Weight
Gain
The other side effect
of prednisone is weight gain. I was told this is normal, but if you get off the
prednisone, then the weight comes of pretty quickly. Well, not yet it hasn't. I
actually tried to use the prednisone to my advantage. Because my dosages were
so high at various times, and I was so full of energy, I went to the gym. My
body type generally bulks up any time I work out, and with the prednisone, I
bulked out A LOT. So, I am not anticipating the typical weight loss. I was
always self conscious as a kid about my body - who isn’t? And bulking out was
not very feminine, so I avoided it by running and not weight lifting, etc...
Not an issue for me anymore. I have learned to be comfortable with my body type
and know that my health is more important than my pant size.
What
am I doing now?
What am I doing now? I’m
out of medication, I have no insurance – like many Americans, but my condition
is relatively stable. I don’t have the horrible rash and itching – it’s slight
right now. However, my feet and legs are stiff and sore after every work out –
more than they used to be – and my metabolism is sluggish. I have symptoms of
somebody not on a healthy diet and full of candida, which is a typical side
effect of long term use of steroids like prednisone: fatigue, weight gain, muscle
and joint soreness.
Balance
my pH
My biggest concern is
my joints. I am doing a 7-21 day detox to try to eliminate toxins that would
cause joint soreness. My studies have shown me that arthritis and arthritis
like symptoms are indicative of an
acidic pH, which leaches calcium out of bones and can cause osteoporosis. An
acidic pH can be caused by too much acidic food like canned or bottled fruit
juices, or too little basic foods like green vegetables. For me, I am reducing
my intake of fruits and fruit juices – except for green apples I am juicing to
help my gall bladder – and increasing my green veggies by juicing and making
vegetable soups. I have also eliminated dairy and wheat for this period of time
because they tend to cause the most issues and inhibit a good detox. This is
not a pure detox because I am not eliminating solid foods entirely, eggs for
protein, or fish. I believe my body is still a little too sensitive to go cold
turkey to a full detox, and I do not want to inflame the dermatomyositis and
start over.
Reduce
Stress
The difference for me
is that my stress levels are greatly reduced right now. I believe that stress
played a huge role in this illness. I have times in my life where I have been
under tremendous stress, but nothing compared to this. Studies have shown that
stress is one of the major causes of severe illness. I certainly am a
believer!! The other thing I do to relieve stress is go to the gym. My gym has
a sauna, whirl pool, and swimming pool. My after work routine for a while was
to go to the gym and cross train: swim, bike and run. Sitting in the sauna
helps to relax, heal, and detox the body, and the whirl pool helps relieve
muscle soreness after a good workout. I also have an excellent massage
therapist who helps keep my stress levels in check.
Know
my self
The most important
thing for me during this period has been to spend time focusing on myself
mentally, emotionally, and spiritually. A healthy person reflects on life as
they live it, is flexible and changes as needed sometimes to adapt to a change
in environment. As we get to know ourselves a little better, sometimes we just
change because it is better for us – an improvement. Our core values may stay
the same, but our perspective may change based on new knowledge or experience.
My core values are the same, but my perspective and how I think about things
has definitely changed. Perhaps that is why my stress levels are lower, my
health is improving, and I am finally able to write again.
