I had a day of mixed feelings, some really bad and some awesome. I almost got admitted again because my heart rate wouldn't get under 200. I was upset throughout all of the appointments but there was nothing I could do about it. I told them no to the admitting, i didnt care. In the past few months I've had to deal with alot of bullshit with getting to hear that there was nothing wrong with me, that it was all in my head from my ex-husband, from my parents, my brother and even my own son taking cracks at me. I have 2 people that are friends come to find out I only have one friend. I tried to talk to one of them, got to hear that nothing I am going through is NOTHING compared to what they are.....I am facing a wheelchair for life, my body is betraying me but it's nothing...OKAY....I got told yesterday that I have been beating around the bush, damn right! Because I've been scared to death of ruining 4 year long friendship, losing my best friend. Well this morning I told them how I felt, what was really on my mine. It's about them fine. They got it. I have tried to bend over backwards to help for years, wrote letter to try to help for their divorce, but it's all about them. Fine. My medical shit and the hell I am living in is not jack shit, FINE. I said when my SSDI came in I'd move out there to be closer, but that pissed them off. Fact is nothing I will EVER do will be good enough and I cannot allow them to cause me a major heart attack like I was warned about today. To top off the shitty morning to get coffee I had to crawl to the kitchen and back to even get coffee because I could not feel EITHER LEG!!!! I took my walker to my apts but got stuck in a hospital wheelchair the entire time. FUCKING SUCKED!!!
On to my apts!!!
First things first
Apt with Dr Goel-- that was my first apt of the day. She is happy with how my migraines are being handled. Follow up in 6 mo in OCT. She increased my gabapentin to help with the nerve pain in back and going down my right leg. ALSO I have lost 3 lbs in last 2 weeks!!! With my meds that I am on that is a godsend!!!
Apt with Dr Ryken's PA-- This is the appointment I was dreading. The other PA Marc no longer works there!!!! If I could have done the happy dance I would have!! The new PA, I cannot remember his name was younger, I could understand him perfectly, he listened to me, confirmed and validated that I was not losing my mind, that ALL of my symptoms, even the issues with the heart, are coming from the syrinx's and the disc's in the cervical!!!! I was almost in tears!!! He said if Dr Ryken, my NS, decides to do surgery on the syrinx's, because of their location and because of the disc's between the 2 syrinx's I will have to be in a wheelchair for about 6mo to keep stress off of the spinal cord. There is a 80% chance of paralization as well with the surgery on the spinal cord it's self....I do not know if I am to keen on the idea of that kind of odds but it might be worth the risk if it will atleast give me some of my life back. But the nerve damage and nerve death that the syrinx's already caused within the spinal cord may never regenerate but it would hopefully stop the progression of them and hopefully stop further damage which is the most important thing. He scheduled a MRI series on the cervical and thoracic spine and spinal cord with and without contrast on the 1st...same day I have appointment with Dr Ryken for surgical consult....I have alot to think about until the 1st right now to decide what I need to do if Dr Ryken decides to consider that surgery because it is risky.
Apt with the Pain specialist-- She said that the steroid injections did not work as she had hoped. Epidural in thoracic and in lumbar to help with the leg nerve pain is next step....Scheduled on the 1st as well.
On the 1st I have scheduled-- pain clinic for epidural in thoracic and lumbar, CT scan on chest, labs, MRI's of cervical and thoracic spine and spinal cord, apt with Dr Ryken, apt with cardiologist, apt with the pulmonary specialist. Going to be a long ass day!!
On Wednesday I received what I was dreading. I received packet from the VA saying I need to give written personal testimony or write down what happened when in the Navy. I have to relive the MST as well as give all information, documentation of it....Wednesday night I was contacted by Busch.....yah that went over really well for me, sent me into a panic attack! I was hoping to do one battle at a time but that didn't work out to well.
I am also working with a Senator and my attorney to get my administrative hearing for SSDI expedited. I cannot wait for 12 to 18 months to get out of this house. This house is pure hell and I cannot do it anymore and trying to deal with my medical stuff and now MST that Ryan refuses to even acknowledge....yah
Last week I had pleasure because of the crap going on with the heart, I had a chemical stress test, Nuclear imaging on heart, and a echo done, Thursday evening around 5 I was called by the Cardiologist office saying that according to the stress test there was a issue with heart and I had to be at the hospital on Friday morning at 6 for a Heart catheter....Joyful. I had that done, I am all bruised still, was released from hospital on Saturday evening to go home, According to cardiologist all tests, except a very small blood clot that was removed by the heart, it all came back normal. Heart and arteries are great. It's all connected to syrinx's and disc's in the cervical!!! I had Cardiologist office forward everything to Dr Ryken's office!
To know a friend who blames me for "betraying their trust" when I did not DO SHIT now says that I am not going through anything. That truly hurt me yesterday. Fact is I am not perfect, never claimed to be. I am trying to do everything I can but do you think it's good enough? Do you think that I can do anything right? Fuck no! They got what they want and they've hurt me I think more than my ex-husband EVER thought of doing and he was abusive as shit! But that is ok, I am getting used to guys being no good. Oh and the best part is I trusted this "friend" so damn much with MY LIFE that I asked them afew weeks ago to be my medical POA because of the brain surgery I did have last July, the stuff going on with the heart and facing spinal cord surgery, I did not feel that I could trust my parents with how they have been, I felt I could trust him to be that and do what was needed if need be. Why do I put trust in people? I would have Chief be my medical POA, I love her but I don't know if she could make the decisions if needed....she's my only friend it seems and I love her dearly but she's to emotional....I guess I am going to go without a medical POA and try to depend on the dr's. Hard ass thing for me for me to do.....
Then on top of all of this I've been friends with 2 people, one is a Navy Vet who both have worked so damn hard to help others with PTSD it isn't even funny. A group that they put their trust in over took their pages, slandered their good names, released PERSONAL information such as SSN, address you name it to over 20k members!!!! It's been a interesting afew days, THEY FINALLY GOT THEIR PROPERTY BACK!!! Thank god!!! I hated seeing what this was doing to them
Update---- today i was doing some research on the surgery their talking....80% chance of paralysis and 60% chance of shunt fail....not ready for those odds
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