name is Tamra and I'm in my early (ok, late) 30's.
I have four beautiful boys ranging in ages
from 7 years old to 16 years old. I'm a small-business
owner and have built my web development business over
a period of 12 years.
February, 2008 - that's the anniversary of the day
my life changed. On February 1, 2008 I went to bed
as usual and had a sudden sharp pain in my chest that
knocked the wind out of me. It ached all that night
and by the next morning, I couldn't breathe - it was
like someone was sitting on my chest. A trip to the
ER that day gave me a diagnosis of "Pluerisy"
becuase they couldn't find anything else wrong.
I spent the next few weeks in bed with horrible chest
pain, shortness of breathe, body aches and fatigue.
My General Doctor prescribed me some antibiotics,
which we actually though worked a little. But nope
- it all came back again, and again.
Since then my battle has continued. Multiple doctors
not knowing what's wrong and the symptoms coming and
going, getting worse with each relapse.
By December 2008, my symptoms were red spots all
over my chest, face and arms (that I now know to be
telaganctasia), joint pain in my knees, elbows and
fingers, horrible fatigue, shortness of breathe, bone
pain in my left shin, difficulty swallowing, edema
in my feet and legs, and myalgia. CT Scans only showed
that I had some fibrosis in my lungs, and blood tests
were all over the place.
I had seen a local Rheumatologist after my dermatologist
ran my RF Factor (422). He wouldn't treat me. So,
in December I drove 3 hours from my home to meet with
a Rheumatologist with UW Health. Finally - I had a
doctor say something is wrong and I will work to figure
it out. He called it an "unclassifiable autoimmune"
disease and ran some more tests (inconclusive). He
did start me on a bout of Prednisone and long-term
Plaquenil therapy. For the first time in almost a
year I felt good!
But, that was short lived, as well. I started having
horrible naseau, vomitting, headaches, pain in my
left eye and memory problems in addition to the symptoms
I was already having. An MRI showed some active demylinzation,
so I was referred to a Neurologist that turned out
to be my biggest nightmare. He said all of my problems
were because of a migraine and that I needed to come
off all my meds and go on anti-migraine instead. I
didn't agree with that so I left and never went back.
Over the next few months, my doctors and I tried
more Prednisone treatments, but eventually they were
having no affect. I did come off of the Plaquenil
and we tried two Rituxan infusions. I saw brief relief
from the infusions, and within a few weeks of them
my condition relapsed yet again.
Since then - as of today, I'm still dealing with
all of the symptoms I've had for almost three and
a half years, plus I now have this weird thing going
on in the left side of my body (kind of like restless
leg syndrome, but it's the whole left side of my body).
I've had to stop working because of the fatigue, the
finger problems and weakness in my hands, plus the
side effects of all of the meds they have me on. My
official diagnosis' are now Connective Tissue Disease,
Fibromyalgia, Chronic Fatigue Syndrome and Sicca (Sjögrens)
Syndrome. I ended up applying for SSDI in December
2009, but am hoping to find a treatment that works
before I have to accept SSDI. Right now I'm waiting
on my appeal on SSDI and I've been told that it can
take 18-24 months for a decision to be made. If the
decision is in my favor, my battle is over. If it's
not in my favor, I have to decide whether to start
all over again or try to go back to work. I did start
a Methotrexate treatment to try and help some of these
symptoms, but I don't think I'll ever be able to go
back to work doing custom design work. Who knows what
my future holds these days. I am seriously considering
going to work as an advocate or working for a company
that represents SSDI cases if the SSDI decision comes
In three years time, I went from being a super-mom,
full-time career woman with a successful business
and socialite to barely being able to get out of bed
most days. I'm not looking for pity - I'm just hoping
my story could help someone out there. I'm only 35
this year and if you had told me 5 years ago I would
be in this condition I would have called you a liar.
As of February 2012 - there's been little improvement
to my life and in some areas my health has worsened.
My CNS is all messed up forcing me to be on medication
to stop my muscles to stop spasming and twitching.
My IBD is a daily battle. The pain I have within my
digestive tract has totally stopped my usual eating
habits to where I can only eat once, maybe twice a
day. Because of that, my metabolism has stopped. My
arthritis seems to be stable thanks to the methotrexate
I started last year, but I continue to have Fibro
flare ups frequently. Every day is a struggle but
it's a struggle I push through in order to allow myself
to live. I have plans to try better treatments this
year, more new-age and less medication because I will
I will get better because I Wanna Get Well! Stop
by my blog for updates and resources!