This was written on 9/13/18
Well, hello there!
It’s been a while, there’s been SO much going on. The last time I wrote I left off devastated because I’d received notice that my disability was being terminated. I put in an appeal and continued my payments but now I have no idea when or how long those payments will continue. We don’t have many options for places to stay. I called the homeless hotlines and emergency numbers but they can’t help because we aren’t actually on the street yet. There was this one place that sounded great but I wasn’t on the street and there was a waiting list. My panic attacks and depression were at an all time high! From what I can gather I wasn’t getting enough treatment. Well! If the system treated people more like people rather than pieces of paper and tried to understand people’s situations, that would be great! I don’t feel well enough to do anything on an everyday basis let alone going to 10,000 appointments. My daughter started having issues that consumed my entire life. Was I supposed to choose myself over my daughter? I only have enough energy to focus on one thing at a time and I directed that energy towards my child. I understand they are trying to crack down on disability fraud but this is ridiculous. I had 60 days to find a job and magically get my life together. I don’t know where you guys live but that’s not happening here! My fear is that with over 30 ailments, issues, conditions, etc. listed in the system they still feel like I’m capable of working. There are people out there with (I feel like) worse issues than mine and they ‘ve been denied! If I don’t get this back we will have NO money. And, for those of you who are questioning… No! I can’t work. Despite the fact that I hurt ALL DAY, EVERY DAY, my chronic fatigue makes it unsafe for me to drive on a regular basis and to overexert myself. I’m sure whatever job would be upset if I was there passing out every 2 secs. I wouldn’t be able to get any work done for my all my issues and fatigue.
Anyway, I’ve been to countless doctors since the last time I was here and I have 10 million more appointments to go (getting caught up on several years of appointments that). I feel like no one cares, that might not be true but that’s how it feels. I’ve been referred to every doctor in the world but what ‘s been accomplished? Ok, I did have a potentially cancerous mole removed. I went to the pain management Dr. today and I kind of feel like nothing was accomplished. I have some pain issues that really need to be addressed. I was given Cymbalta and an appointment for a Ketamine infusion. I don’t know maybe they feel like the Rheumatologist will handle it. I feel like each dr is waiting for the next person to handle it while still getting paid.
My family was REALLY upset when I said I wanted to kill myself but no one is living my life. I’m tired of surviving from one second to the next in pain. My hands hurt too much to hold the steering wheel, I can’t put pressure on my feet or ankles, it’s rainy so ALL my joints hurt, my sciatica is going crazy. Hell, I’m too tired (literally) to keep listing crap.
Everything is up in the air and I think not knowing anything in one direction or the other is triggering my anxiety more. I try not to think about it but no one truly realizes how much my daughter and I LOVE where we live. We finally found a place that felt like home! Whether it be now or in June we have to leave here (I’d rather it be in June! Fingers crossed !!!!!). I can not imagine not waking up here, coming home to this place, looking at the view. We are not headed anywhere as nice as this. I’m so glad my St. John’s Wort is working right now.
I cut off my locs on 8/25/18. It’s a little hard caring for really long hair when you have no home. My house looks like a storage unit, we started packing and ran out of room to put things so that stopped. With all the appointments, my daughter back in school and me feeling like sh*t, not much time and energy for packing.
Even though my life is never going to be the same, I’d be beyond grateful to have my disability back at its current level, just for a little while before my daughter turns 18. Once my daughter turns 18, I’m losing half of the one that comes into the house and ALL of the other. I’ll be taking care of the same 2 people on half of what we get now. I don’t know how my daughter’s situation is going to turn out, I don’t know if she’s going to get better or if she’ll be able to work and go to school. Too many things to think about at one time.
We can all breathe, my rant for today is over lol.
I’m going to wrap this up for now. My panic attacks have subsided, I’m seeing every dr. in town, I have an appointment with legal aide, and I’m trying not to think about the fact that our lives are changing.
If anyone with chronic pain or Fibro has had a Ketamine Infusion can you tell me how your experience went? I’ve had one pain infusion but it didn’t help much.
I’ll update you guys again when I get time or feel well enough to do so.