Once again I wish you nothing. Not a happy New Year. Not a Sweet New Year. All a total crap. Everyone gets sappy and emotional and starts coming out of the wood work. All to wish a bunch of strangers. Facebook friends. Co-workers. It is all lies. Fake. You didn't really care what the last year was like. So why do you all of the sudden seem to have an outpouring of fake love. I have distanced myself from most. Makes it easier to suffer in silence. Not have to explain myself. Describe what I'm going through. Just experience things on my terms. No one to answer to. So don't call me or bother texting me your message filled false wishes. And by the way, a general Facebook status counts for nothings. No one cares. Don't waste your words.
So Happy Nothing to you and yours. Cheers.
Wednesday, September 24, 2014
Sunday, September 7, 2014
Thursday, September 4, 2014
The Real Story
I was diagnosed with Pseudo-tumor Cerebrei in November,
2009. Was admitted in Hopkins after a bunch of misdiagnoses. At that time, they
found that I had a venus stenosis (which from my understanding, means a vein in
the back of my head is small). They had discussed Stenting the vein. But it was
decided to start with the medicine route. I also had third nerve palsy and 7th
nerve palsy, with a lot of vision loss, specifically in my peripheral vision. I
had received various lumbar punctures, all showing elevated pressures. And had
a spinal drain. I was seen by Dr MA, a neuro-ophthalmologist at
S and continue to see him. I was taking Diamox for fluid drainage and
Topamax for my eyes.
In May, 2012, after taking myself off all meds because I
didn't have insurance, i started having symptoms again and was admitted to
SN hospital. There, I received spinal taps and
decided to get a shunt. I did not want to go back on medication. My surgeon was
Dr S, who inserted a non-adjustable peritoneal lumbar shunt. After my
staples were removed, I began to feel much better and had been managing
healthily for two year plus.
In October of 2014, I moved back to B and began
seeing Dr A again. Presented with good visual fields and good vision. I
also began seeing Dr MW at H as my new neurosurgeon to
manage my case. He recommended that I meet with Dr DR at Hopkins
to have a neurosurgeon familiar with my case in case of complication.
In July of 2014, I began feeling symptoms again. Headaches
and nausea and after calling Dr W, it was recommended that I go straight
to H ER. I was cleared by Opthalmology and never seen by Neuro. CT scans
and X-ray showed nothing and I was sent home and told to follow up with my
neurologist. Dr. W's office was very difficult to get a hold of. I was
finally sent to Dr YC, a headache specialist and colleague of Dr W.
With only a consultation and no testing done, she said that it was most likely
not migraines and felt very certain that my symptoms were because of my shunt.
On August 20, I went to H and had a lumbar puncture with contrast and
then did three Shunt Patancy Studies over a period of 24 hours. A week later, i
was seen by Dr R who confirmed that the shunt has malfunctioned and is
not draining CSF. I am currently waiting to hear from Dr G's office in
H to schedule a CTV. Dr R would like to find out if the I am a
candidate for Stenting due to my Venus Stenoses before committing to replacing
the shunt. I have not been able to reach anyone at Dr W office to get
medication treatment in the meantime and went to my general doctor, Dr E R at S H. He prescribed Diamox and Zoloft and left
messages for Dr W and his nurse practitioner CW. Dr
R's secretary was informed by Dr W office that they no longer
wanted to follow my case and felt that I should be seen completely by H.
So yeah...
Side effect
My best friend is in active labor. I'm so anxious to meet this baby. Almost like it's my baby. It's actually holding me together. I started taking diamox last night. Again. The dreaded diamox. I was up the whole night. I had to pee almost every single hour. And then when I had to get out of my bed, my head was spinning. Oh how I hate diamox. The side effects take over your life. How is a person expected to function. How can I do anything. Be anything. I can barely lift my head. I know that there are people that care. And want to help. But it's hard for me. Hard for me to ask for help. To turn outward. But it seems it's getting to that point. The stage in life when you can't always be strong. Need a shoulder. Support. Diamox will do that to you. Rearrange your life. Your mind. Your every move. Wonderful.
Subscribe to:
Posts (Atom)