Went to bed last night at 7:20 pm right after a nice shower. I put on a movie, it was corny, I put my c-pap machine on and before I know it I was sleep. Must of been about 8:30 pm I didn't get up until about 1:45am for my first bathroom run. As usual I woke up at 4:45am however I stayed in bed until 6:30 am. WoooHooo! I'm still tired aint that a bitch? I went to my online support group, I checked the lupus page and I will use the topic I was reading my subject to voice today.
But first I just want to release the tears I felt when I went to the Pulmonary Hypertension page, it is there that I long support. I am waiting for official diagnoses and want, need answers and support. Well I guess since I'm not officially diagnosed I'm not worth the members time. I've asked questions and no response, a man who joined the site after me got responses. What the hell is a support group? You only support those who are sick not waiting to find out. The wait is scary and it's during this wait when support is really needed. My doctors considered PH last year but since I don't have insurance they couldn't preform the heart cauterization, but the stress test and echo shows activity on the right side of my heart. The doctor that suggested that I have the heart cauterization says I need to be treated right away. Fuck it...I need to stop crying about people who won't support me, I don't know them and they probably don't know shit anyway. I'll have insurance next month and get the help from real people, not from vitrual snobs.
On the lupus page someone questioned the brain fog. Reading the comments on that page was enlightening. Funny choice of word, huh? I felt this brain fog when I was still working at the PO. I thought I was just tired. So I would try to get more sleep. I wasn't drinking as much but I was doing my cocaine because that woke me up for short periods. I use to be so on point, smart and I had an extensive vocabulary. I figured all the years of smoking, drinking and drugging had caught up with me.
I use to take care of this lady who was 92 with dementia when I was unemployed from the home care agency. I worked for her when ever I was unemployed. It was something like 2 years off and on. When I first started we use to have great conversations about her life, her trips to different places around the world. As time went on her memory became progressively worst. She couldn't remember my name, she couldn't remember if she ate, she couldn't remember what we did that day or even what day it was no matter how many times I told her. She was also blind, she became blind in her 80s'. I felt sorry for her and I prayed to God that I would never loss my memory, it was a major fear. When I was a coordinator in home care I had plenty of clients with alzihmers, they were always the hardest cases to cover.
Losing brain function is scary especially when there's no concret answer. I noticed that on some days I can stay focused, watch a movie, read a book, even play suduko. On others I can't stay focused. Reading the comments in the support group this morning was soothing and reassuring. It let me know that I'm not going through this alone. Now I will make noise when I see doctors, there has to be some help out there and there has to be doctors who understand the impact lupus has on the brain. I'm sure if they are caring for lupus patients and many of us are saying we are having memory problems, I mean they can't ignore it.
Everyone around me gets annoyed with me when I don't remember things. I literally feel like I was in a black out when they say, 'remember I told you.' No! I don't remember! But they insist, 'yes you do.' I get so angry, not scared because I didn't believe it was me with the problem. They were just fucking with me. Dispite my memory failing when I need a word to finish a sentence, when I can't remember the name of that good movie I saw. When I make a list of things to do and I can't remember where the list is. When I go to get something and I can't remember. Even as I write this blog I can't remember my next thought I want to express. Funny how I remeber my past, funnier still how certain events trigger memories and I say I'm going to share it in my blog only to forget when I go to write. I remember tastes, smells, looks from people. I can even remember conversations of no importance.
Lupus is a horrible illness, there are so many aspects of it that when you think you got a handle on it, it smacks you in the face with some more bull shit. Sad that no one understands, sadder still no one really cares unless they are affected. When you become sick friends no longer have time for you. I really never had too many close friends, but the few I had don't hear me cause they only hear their own problems. I guess over the years I was always the rock, the one they could (? what's the word?) spill their anger, pains and fear to. I was the one who had the voice of reason, who would listen.
Now where are the good listeners for me, who is there to comfort me. I need.............
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