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.
Thursday, August 28, 2014
Why
I'm just sick of it. Why does this keep happening to me. What did I do to deserve this. How am I supposed to keep going. Keep fighting. I'm tired. Worn out. Overwhelmed. Stressed out. Anxious. Enough is enough. No more. Please no more. I'm mad. At you. At him. I hate him. Why am I alone. Why is it ok for you to abandon me. Abandoned. Neglected. Forced to fight alone. Suffocate on my own. By myself. Over and over again. Why does this keep happening to me. When is my break. When do I get to come up for air. This isn't right. It's all wrong. So wrong. I can't be strong. Won't make it through. The truth is that it's times like this that I wish I had a mother. Someone to care. Unconditional love. Why.
Monday, August 18, 2014
Poof
I sit here reading her response. And I'm just bawling my eyes out. Although, I was just waiting for that thing that would tip me off. Push me over the edge I was standing on. Unravel me. She always has a way with words. And I guess I'm just so vulnerable right now. Yeah me. Vulnerable. Shocker. Who would believe it. There's nothing that's right. Nothing feels ok. No stability. Pain in all directions. Misery and sadness swallowing me whole. Sadly, I wish for a hug. A need for some comfort. A bit of love. Maybe some attention. Perhaps affection would do me some good. But alas, it is not there. Does not exist. Not an option. Not for me. Nope. Instead, I drown in my own sorrow. Suffocate in my own emotions. Disappear a little bit more each day. Until poof. I will cease to exist.
The Truth Hurts
Hi S,
I'm sorry that I didn't respond and have not been in contact. It means a lot to know you are thinking about me. It's hard for me. I know that's not an excuse. As life has never been easy. For me. Or for anyone. Especially you. But it's definitely on the difficult side now and I am holding on by a thread. Therefore, it makes being "open" and "keeping in touch" very difficult. 1. I have nothing good to share and I try to avoid complaining. 2. I feel as if I have disappointed you. You have always seen the good in me and truly feel that I have all this potential. And I have flat out failed. I haven't accomplished. So it becomes easier to just keep to myself. To not reach out. It's a cop out. But it's less threatening. I'm not sure if anything I am saying is making any sense. I look around this life. Mine. Those around me. And I see pain. Sadness. It's pretty hard for me to relate to any happiness at this point. And that is a sad thing to admit.
Thanks for always being there.
R
Tuesday, August 12, 2014
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