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who is suffering from PM or has been
recently diagnosed that although it
takes a long time and is not a perfect
recovery, there can be life after PM, a
life filled with new things, joy and
happiness. Of course if you'd told me
this back in 2001 I would not have
believed it. So here's my story:
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at first appeared to be the flu but then
got much worse. Aft first I had a
cold/flu with a high fever and a
headache. I had just started a new job
so instead of staying home I worked
throughout the first week figuring I'd be
fine and could rest on the weekend.
Unfortunately the second week was
much worse than the first and I started
having symptoms of a weakened
immune system.
under the skin. I had constant chills. The upper part of my legs started to burn and all my joints swelled up
and ached. I was totally wiped out and exhausted. After the first 2 weeks, the fever went away and I went
back to work because I had absolutely no choice. I was a single mother to a 13 year old daughter. I had bills
to pay. I still don't know how I made it through the next year. It was awful. The first 3 months I would get up
and go to work and fall into bed the minute I got home. My legs burned constantly and the sores in my mouth
would come and go. I still had chills all the time. The corners of my mouth were constantly cracked and
inflamed. I now know this is called chelitis and can be caused by a weakened immune system. Little by little
over the next year I started to feel a little bit better, at least during the day although my legs still constantly
burned. By nighttime the chills returned and I was exhausted. I could not stay up past 8:00 or I would feel
horribly sick the next day. Of course I went to the doctor and they had no idea what was wrong with me. They
told me it was probably a virus and that sometimes it took up to 6 months to recover. They ran all sorts of
tests, none of which was positive except for the ANA and it was only slightly elevated. They tested me for
herpes, they tested me for Aids. They gave me no medication.
Little by little I did start to get somewhat better. I didn't notice any muscle weakness and no real specific pain
except for the burning. The only problem was anytime I attempted to stay up late or do too much I would
backslide into acute illness again. I no longer could have any kind of life. I rested all weekend and every
single night so I could make it to work each day. Nineteen ninety-six wasn't bad. I was better than 1995 and
started adding some activities back into my life. By the end of the year though I was having new problems. I
could barely climb the stairs and was totally exhausted again. I had a sore throat and chills every night. I felt
like a rotten mother and a rotten person. I was not very happy at all. I was having a long distance relationship
with a man in Texas that I had met through my work. It was my big secret that I had to rest all week and sleep
on the plane in order to spend the weekend with him. Luckily plane fair isn't cheap and I only saw him about
every 3 months in person. I felt horrible in January of 1997, 2 years after all this started. I started blaming my
tiredness on having to work full time and being a single mother. Some of the time I was in denial and planning
my future and other times I was laying in my bed terrified that I would die because I knew something really bad
was wrong with me. I continued to see doctors and continued to be told there was nothing wrong or that they
just didn't know what it was. I used to cry every time I left the doctor's office.
I moved to Texas in June of 1998. I thought I was Cinderella and that all my problems would be solved by
marrying my successful boyfriend. I was very much in denial at this time. Things actually got better once I
moved though. For the first time since I was 20, I didn't have a child to care for. My daughter at almost 17
years old decided to stay with my parents and finish high school before following me to Texas. (That's another
story!) I took the entire summer off, went on a cruise, took care of myself and really started to feel better. I was
so happy that I was finally better. It didn't last because I went back to work and was right back into the
exhaustion and illness again. I got a great job, was making more money than I ever had but I was miserable
because I was sick. I missed my second week of work because I had an acute flare up of muscle and joint
pain, fever and chills. This happened several more times and luckily my employer was very understanding.
This continued though 1999 until it got worse when I ruptured several discs in my back. According to my
doctor my muscles were probably too weak to hold everything in place. I never felt that any specific muscle
was weak. I just felt weak all over. Everything became an effort. Just sitting up was exhausting. I started
having to lay down at work. I was having more and more trouble making it through the day. The man who I'd
moved to Texas for didn't want a sick girlfriend so he asked me to move out of his house. I couldn't even lift a
box. I changed jobs in August of 2000 and that was the beginning of the end for me. I just couldn't keep up
with the demands of a full time career position. All I wanted to do was put my head down on my desk and
sleep. Part of my job required me to travel occasionally. I had to devise ways to pull my luggage because I
could no longer lift anything. I knew it was bad when I went to Las Vegas in November of 2000 and spent most
of the time in my room, too exhausted to enjoy being there.
I continued seeing doctors once I moved to Houston with the same result I'd had here in Massachusetts. Not
only did I visit doctors, I saw a chiropractor, a massage therapist, an energy therapist, a minister and a shrink.
Nothing made a significant difference although I did feel better temporarily with some of the natural modalities.
I took vitamins and herbal supplements, I did yoga, I prayed. I searched my soul to discover some past or
current life sin that was causing my illness. I started seeing a pain specialist as a result of the herniated discs
and he (Dr. Michael Gorbach of Clear Lake, TX) referred me to Dr. Mavis Fujii, a neurologist, also of Clear
Lake, TX. Dr. Fujii was well known for her ability to diagnose diseases that other doctors had missed. I saw
Dr. Fujii for almost a year and she was basically done with me - thought I might have MS as I 'd had problems
with optic neuritis but of course I tested negative for that too. Finally during a visit in September of 2000, I
broke down crying as I told her how I could no longer hold up my hairdryer to dry my hair, my arms were now
killing me the same way my legs and back were. To me this was the final straw. I couldn't even lift my arms up
to drive to work every day. My boyfriend would walk me out in the morning, carrying pillows to prop my arms up
on so that I could drive to work. It was actually getting dangerous for me to be out and about on my own.
Driving was exhausting as well.
This was the visit that turned it all around for me. A light bulb went off in Dr. Fujii's head and she told me "I
know what you have - its called polymyositis and its a relatively rare autoimmune disease. She told me she
had to do some tests to see if she was right - nerve conduction studies and an EMG to rule out nerve disease
and determine if I had a muscle disease. If it was positive for muscle disease we would then do a biopsy. It
was and we did. Finally, I had an answer for all of my suffering and I was thrilled. My happiness was short
lived though when she told me that there is no cure for PM. She did tell me it was treatable with varying
degrees of recovery. I was immediately started on high dose Prednisone which caused me all sorts of
problems, both physical and mental. The side effects were so severe I could not continue taking it.
By this time I was very weak and had to stop working. I tried working part time, I tried working from home,
nothing worked. I was very, very sick and spent all of my time on the couch, only getting up to use the
bathroom. My new boyfriend, Tommy was very supportive as were several good friends that I'd made since
moving to Texas. Dr. Fujii then told me about a treatment that was pretty new, called IVIg. She told me I'd go
to the hospital for three days and get a long infusion of human antibodies. She said it might help and if it did I
would feel amazingly better right away. The first treatment did help me alot but only lasted about 10 days. My
muscles were still pretty weak and I didn't have time to rebuild them. A month later I again went into the
hospital for another treatment but this one did nothing. IVIG was in short supply (and sometimes still is) and I
had to wait 2 more months for my next treatment. Again this one worked for a short time. Since I was
responding to these treatments but only very briefly, the doctor suggested that I start to receive it weekly, in
smaller doses. She set it up so I would have a visiting nurse come to my house and infuse me once a week. If
the nurse couldn't come, I would go to an infusion center right near my home. I started this regiment and little
by little I started to regain my strength. I tired to go back to work but I immediately relapsed from the stress and
the effort. I was doing great and by that summer was feeling better than I had in years.
Then the bottom fell out. My employer changed insurance companies and the new company wouldn't pay for
my treatment. Within a month all the strength and good health I'd gained were gone and I was once again
living on the couch. I appealed the decision and was denied. For three months, in a very weak state I learned
all about insurance companies and how they operate. I learned that no doctor or nurse had even see my case
and my appeals were just filed. Luckily my work had a contract with a company that helped advocate
insurance issues for its employees. I also had to get a case manager, a registered nurse hired by the
insurance company to help manage my claim. I had previously turned this down not realizing that it could
actually help me. I assumed that the job of a case manager would be to keep costs down for the insurance
company, not to advocate on my behalf but that's what they actually did. In the end they finally approved my
IVIg claim but it took 3 long months and in that time all the progress I had made was lost and I was back to
square one - weak and sick. This time, the IVIg did not work as well. Once in awhile I would have a good week
but for the next 8 months I pretty much was ill. I couldn't understand why but I started charting my health
against the lot numbers of the IVIg I was receiving. This proved to me that certain lots worked for me and
certain lots didn't. Once I realized this, I called the pharmacy and asked the pharmacist if he'd work with me to
insure that I received only "good" lots. My health then started to get better, and I slowly regained my strength.
Every time I would feel good though I would overdo it ( be up and active for 4-6 hours) and cause a relapse.
In December of 2002 we moved from Texas back to my hometown in Massachusetts. I wasn't feeling great
but I was up and around and able to do some light grocery shopping and basic household chores. I still had to
rest alot and could not overdo. I started learning to manage my disease to avoid the cycle of feeling good,
doing too much and then ending up back on the couch for a week. I got a new neurologist and a pain
specialist. I continued to receive IVIg weekly and to get the lots that worked the best. My pain doctor did nerve
blocks and epidural steroid injections which helped with my pain levels. I started having more good time. My
granddaughter was born in April of 2003 and became the light of my life. I felt well enough to babysit when my
daughter went back to work although I couldn't do it every day, I could do it every other. My mother took turns
with me. I started making jewelry in the summer of 2003. I thought it was a great hobby because I could do it
even when I didn't feel well, laying on the couch.
I now receive IVIg bi-weekly and am doing quite well. It is a challenge and I must manage my life to insure that
my health stays optimum. Very little alcohol, lots of rest, no repetitive muscle movements (like painting or
vacuuming a whole house). I no longer work, I applied and was approved for SSDI back in 2001. I do a little, I
rest a little. I do have some help with my housework. There are still bad lots of IVIg, sometimes several weeks
in a row and I immediately start experiencing pain and weakness until the next good lot comes around. My
disease is not in total remission but sometimes it feels like it is. I try to take one day at a time and stay
positive. I am happy and I feel blessed.