Sections in the post so you can read what you want or all of it:
Brief Background, Surgery Update, Disability Update, Overall Health Update, Postive Note
It's been awhile since I've posted. So much and yet nothing has happened. So much time has passed, and yet I'm in the same boat. I think the hardest part of chronic illness is the uncertainty. The inability to plan, because you don't want to let others down, or let yourself down when symptoms or a flare up takes over and you have to cancel.
Brief Background
For those who are new, I have been diagnosed with Myalgic Encephalomyelitis/Chronic Fatige Syndrome, Fibromyalgia, Postural Orthostatitc Tachycardia Syndrome, Mast Cell Activation Syndrome, Hypermobile Ehler's Danlos, Interstitial Cystitis, Polycystic Ovarian Syndrome, Irritable Bowel Disease, GERD, Tinnitus and Long Covid... on top of that I have anxiety and major depressive disorder (with everything going on and how drastically life changes, how could I not?) Looking at that list, at times I question, how can I have all of that? The problem is a lot of symptoms overlap, a lot of these illnesses are comorbidities to others. For the longest time I was searching for answers, being told simply lose weight and you'll feel better. Try this diet and you'll feel better. Work out and you'll feel better. The problem was that each time I tried something, it would trigger a response in some other system of my body. I felt... feel like I try so much, and am falling backwards.
Bariatric Surgery Update
In my last post, I said I was planning on having bariatric surgery and that I was hoping my disability would be approved by a judge at a disability hearing. Well, again it's hard to plan when you have so many things impacting you. I was doing great going through the checklist to meet requirements for the surgery, until the psychiatric evaluation. I had that done in June, and since I was hospitalized in November to be observed for a med change dealing with my depression, I failed the evaluation. I made a positive decision when I was having suicidal ideations to call my psychatrist and see what needed to be done. My doctor was doing his round in the hospital, so his PA said she was uncomfortable making the med change without being observed. I checked myself in, despite how uncomfortable and lonely it is to go to a psychiatric hospital because I followed the recommendations of my medical team. I did not make any attempts to harm myself, I just did not want to be living this life, feeling this pain, dealing with all of my systems at different times attacking me or not working correctly.
When I was told I failed and would not be able to move forward with the surgery until at least a year past from my hospitalization, I gave up hope on it. There were more hurdles I had to jump through, and listening to others talk about mutlitating my body in the hopes that it helps one aspect of daily frustrations was too much for me. I'm not saying I won't do it. It's just not on the table right now.
Disability Update
As for disability... I had my hearing August 30, 2023. Overall, I felt like it went well. I lost my train of thought a number of times #FibroFog, but my lawyer redirected me, and presented my case well. At the end I asked the judge when I could expect a determination to be made, he said about 30 days. Leaving my lawyer said, more like 30-60 days. It is now December 13th. 15 weeks have passed. 105 days later and still not a peep. I've reached out to my lawyer's office and they have nothing to share, that I just have to wait. Last night I was so angry, I googled how long a judge has to make a decision, because surely there is a time limit. This is what I read:
"The length of time it takes to get a decision from an ALJ can vary depending on several factors. Often, it takes 2 to 3 months to receive a decision, although the process can take more time or less time depending on the circumstances.
Some people may get a decision within a few months, while others may wait over two years. The SSA has set a goal of issuing a decision within 12 months after holding a hearing."
Some people wait OVER TWO YEARS for a JUDGE to make a decision regarding their case. Keep in mind that before it even gets to a judge, you have to apply, be denied, appeal, be denied again, THEN go to a hearing. I began my journey with applying for disability on December 31, 2021. It has been almost TWO YEARS since I initially applied, and I may have to wait two more years for a judge to make a decision? How is this right? How are some of the most vulnerable people in American expected to survive?
I understand that my illnesses are not on the verified list of disabilities in America. I understand that some people may try to abuse the system. But HOLY MOLY! I've had many specialists working with me. My quality of life has declined more and more each year, because I'm not able to afford the treatments and doctors I am recommended for. Often times one specialists treatment triggers an episode of another illness.
The more I am able to research and live out life as a chronically ill individual, the less I trust the system. The more pain and hurt I see in the lives of others, because their needs are being neglected. So often I feel like giving up, and saying I'm ready for the next life, becasue what does the rest of this life truly have to offer me? I'm thankful for family and friends that have tried to be supportive, but they are living their lives and moving forward while I'm staying stagnant or falling backwards.
I left the classroom and tried an office job. It didn't work out. I tried Ubering during my good moments. The cost of gas and maintanence, as well as the inconsistency of my ability to work made it unprofitable. I've tried finding those online gigs that allow you to work on your own schedule, and they are not profitable, or are flooded by people looking for side gigs and there is not enough work.
I'm sorry if this post is not as hopeful as previous posts. I'm just so tired. I'm so frustrated. I'm so angry.
Health Update:
Last week I went to the ER... or I guess now it's called the ED, after a week and a half of severe waves of nausea and dizziness, it got to the point where I struggled walking straight, and falling off the toilet from the world spinning. After being given meds in the ED, things did not improve so I was admitted. Since I was feeling a lot of pressure in my head, they decided to treat me for an atypical migraine. Those meds helped me sleep, but the dizziness and nausea persisted. I was given anti-nausea and anti-dizziness meds for over twenty-four hours. Since I wasn't throwing up they told me that I would be able to continue the medications at home and just wait the vertigo out. I suppose I've now been diagnosed with vertigo too, since this is not the first time this has happend, it was just the worst time.
I've had to cancel appointments with specialists because I don't have the money to see them, I don't have the money for the meds they prescribe (since they are out of network, insurance doesn't cover the medications either). Most recently I had to cancel a neurology appointment, because I have not been well enough to drive.
Positive Note:
I'm in a waiting game still. It's been almost four years since the severe episodes/flare ups/sick spells began and gains have not been made, other than diagnoses. One positive is that in the midst of this I have fallen in love with a beautiful soul and am in a long distance relationship with him. His love, his kindness, his smile and laughter bring me joy and peace in the midst of this dark, trying season. Also, whenever I am able to, I get out and watch the sunrise. I know I'm angry and frustrated, but in the midst of it all I'm trying to remember the beautiful and what I'm grateful for.
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