Friday, May 10, 2013

Avoiding

I have been avoiding blogging for awhile. I feel so broke, like noone will want me like this, shit i dont think i would  want to deal with this shit if i had a choice. How often do i have to hear it's not you but get told i am triggering someone? How much am i supposed to take. No wonder why there is such a high suicide rate with this shit

Friday, April 12, 2013

I cannot believe this :'(

I have been fighting this for months now. I just listed NightRider for sale....She was my first BRAND new car ever, she was my dream. sports edition, sunroof....i felt like i was flying and free when i was driving her :( I kept praying and praying that the Dr's would fix me so I could keep her, I only bought her only March 2012 and only got to drive her good for maybe 8 months before everything hit hard. I've been praying this wouldnt happen :'( .....It's just getting so hard to do stick shift with my legs and back, and getting in and out of a car is almost impossible anymore. I cannot believe this is happening :'( Going to put a picture of her in here so I always have a picture of her :'( and yes i am actually crying. This crap with my back and spinal cord is not only costing me my body but now my dream car

Interesting day Thursday ...Been awhile since I wrote. Long update

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

Thursday, March 14, 2013

Totally pissed off now, no wonder why people hate the gov't

Well I am totally pissed off. I just just the decision on my appeal for my SSD. They left off SM AGAIN in the decision!!!! Because of this I now have to go before an administrative judge !!!!! I am HOT!!!! I am waiting on attorney to call me back!!! Says that there are physical impairments evident but nothing that can keep me from working? I am in constant pain and fall constantly and cannot feel my legs!!!! Stupid damn Govt!!!
 How can people be NOT disabled and be able to collect benefits but I am on verge of being stuck in a WHEELCHAIR and I'm not disabled?!?!?!?! THIS IS FUCKED UP!!!!!

Wednesday, March 13, 2013

I am to wits end

I am at wits end damnit. I poor my heart and soul into loving someone for years, hiding it so i knew it wouldnt hurt him and his family. I was there for years to try to help, support, be a friend no matter what, even defended him when I knew he was in wrong because i knew he was in a dark place, talked him out of so many dark places to count and I NEVER left him. I wanted to be by his side no matter what but I could not. He was always there for me and I was always there for him, I was stupid and fell in love with someone already taken. I was stupid and fell in love with a man who could not give his all. I was stupid after I could not hide my feelings anymore and I sent him a simple video and I left it at that for afew days. When he got back to me about video he wanted to talk to me about it. Saying he had felt same way (which anymore I do not know what to believe anymore if that was even true). I thought (stupid me) I had found my soul mate. We grew closer and closer and one day he proposed (which then he said he didn't know where it came from, now I do not know if he had meant it). We started planning (or I did actually...he didnt want to help), he wanted to move to FL after divorce was final (I started looking for houses...he only found things wrong with them or agreed on them). I would ask him if he still loved me (I think I knew answer) but he kept getting mad and saying yes. He filed for divorce (which I thought to my self thank god I finally will be with the man I love) I was beyond happy and full of joy. Then one day as always I said good morning sweetheart how did you sleep and then after that because  I had the house completely to myself I asked if he wanted to talk on face to face since he had gotten a Iphone and he got really upset and started yelling, as always I apologized like always. The next day he text message saying we need to talk, call when you can. Which I did about 20 or 30 min later because I'd been in hospital for afew days before that. He said all I do is piss him off anymore and he was breaking it off and did not want to talk to me.

With that I was upset beyond words, during this time I had a colonoscopy facing cancer along with all of my neuro diseases taking over my body (he said he never cared about my health problems but I think that is what the issue is), nothing else. He told my friend from back in the Navy that he loved me and still cared for me, even told her that he loved MY daughter as his own, do you think he ever ONCE told me? NO!!!!!! I've been continuously hurt repeatedly, how much more can I take? I wrote him a letter (about 6 pages wrote out) of all of my feelings towards him, my friend said that he said he read it multiple times but do you think I ever heard crap?!?!?!

I hear from my friend that he does not know what his wife did afew years ago while in the hospital which upset me because I told him repeatedly since the meds were out of his system after his surgery, I NEVER held anything back!!!! I talked to him calmly, helped him look for apartment (against advice of my friend, she says why help him if he's hurting you, why because I love him with everything!!!!) I even wrote a letter to his attorney and the courts for his divorce outlining everything that she did that I was aware of while he was in the hospital. Because he wanted to move away from PA after the divorce was final I suggested moving to KY to be closer to my friend, that way I knew he was safe, and he could help her with her medical stuff and her son and her husband would not have to worry as much. Offered to pass the apartment complex I had found to him so he could look and I get yelled at. WHAT THE FUCK CAN I DO!?!?!?!?! I love him with everything but I cannot keep dealing with this being treated this way. I've been giving him the precious space he wants along with helping him with him finding apartment and helping with divorce as much as I can. I am not shit to him, that is what it feels like, I don't think I ever have been. In the past few weeks while dealing with colonoscopy and waiting for biopsy results and the neuro diseases I have felt like garbage, felt like nothing, lower than nothing. NOONE TREATS MY DAUGHTER LIKE THIS, MY EX HUSBAND TREATED ME LIKE THIS.....I WILL NOT DEAL WITH IT ANYMORE!!!

Tonight I got fed up and laid it all out, told him to delete both letters I wrote him, the one with my feelings and the other for his attorney. I know he wont delete the one for his attorney because that benefits him only!!!

Tuesday, March 12, 2013

GOT GOOD NEWS!!!!

first tests were wrong yesterday when I got the biopsy results!!!! Dr Kalala's office called abit ago!!!! ALL POLYPS ARE NEGATIVE FOR CANCER!!!!!

Monday, March 11, 2013

Trying so hard

I am trying so damn hard to not lose all hope and emotion right now. Losing control of body and now cancer without knowing how they will deal with it yet scares the shit out of me. Seems like everything is piling up!!!

Then the man I love is being cold as ice to me and it hurts so bad. I do not know what to do. I've been there 4+ years, through everything, tried to protect him, always been honest with him. Now he's being so cold. When I tell him my feelings it's like a ice block I hit...It's like he does not have feelings anymore towards me. For god sake what did I do but try to protect, love, care for him!!