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As you all may know I just moved to Hershey Pennsylvania from Tulsa Oklahoma. My diagnosis
came in July of 2011. After a long year and half journey of doctors. Right before we moved
I found the best doctor. He was kind of fresh out of medical school. But had a few years
out of his residency. He wanted to do everything he could to help me. but we were limited at
the time because the insurance we carried through my husband sucked. It was not known
to me that the insurance company had a ten thousand dollar limit. I pretty much used
that up in one visit. So medications were limited to the cheapest available, and the
cheapest don't always work either. Procedures that needed to be done were put on hold, it
was okay though because he was worried about our financial situation and didn't want to
break the bank with medication costs and procedures.I became pregnant in middle of treatment. I
was five months along and didn't know it. Since becoming pregnant I was able to qualify
for state insurance, I was refereed to a high risk OB doctor because of my medical conditions.
My treatment was put on hold because of the pregnancy.Bryson was born a month early because
an increase in blood pressure,high pulse, and a headache that would not leave. I do
believe it was partially my fault because the family took an off roading trip. After
my few weeks of healing after the c-section, I wanted to get back into my primary, but
they wouldn't see me because I owed a two thousand dollar balance. I am on disability
so I don't have that kind of money to pay off that kind of bill. The journey to Hershey
was an event in itself. I was up for over thirty six hours had to drive and take care
of a baby at the same time. You can imagine what that was like. I do believe my body was
starting to shut down and retain fluid, I grew double the size of what I am now. It
was scary because I have congestive heart failure. I went to the emergency room went
I got here to Hershey. They were unsure as to what was going on, they said to get into
a primary care. The state insurance I was able to get into a clinic but with a nurse
practitioner. I have never liked them, however she did get referrals in fast. I have been
on tramadol for a little over three years same dose, she said that my dose was way to
much.Mind you the prescription was written by a doctor. She didn't want to fill my sleep
medication either, until I had a sleep study done. So as of right now I am just sitting
here waiting for treatments to start. When we got here my vision was really bad, seen
an eye doctor and they had to increase the strength in my glasses. Still very painful
behind my eye and I can tell my left eye looks different than my right. I feel as though
I am going to have major problems with this nurse. I don't feel she understands the seriousness
of this condition. I also have a lesion type thing on my arm that has been there for over
a year that has been increasing in size and I also noticed another one that developed
on my shoulder where the bra strap sits.This is very important to me and I am concerned
it is not something good and I would like to start treatment as soon as possible. The
dermatologist appointment isn't until the end of July. This is what it looks like. This
update has pretty much brought you all up to date. As what is going on with me right
now. I really want to find more info about the jugular vein obstruction that could be
a possible cause of intracranial hypertension. But again that would be another referral and
another doctor and having to explain everything all over again. I will update again soon,
keep spreading awareness and hopefully one day they will find something that will really
help.