FUCK AMERICAN HEALTHCARE
I do not want to cry anymore. I do not want to feel pain anymore. I do not want to deal with this anymore. Fucking help me.
This is Buster: who has literally been more than just a pet through all of my struggles. He is an angel sent to me. He licks my tears when I cry and cuddles with me when I want to die. He is a constant reminder that he needs me to survive as much as I need him. I’m so grateful to have such a special and supportive animal.
Update: It has been over a month since I’ve been able to use my left leg. I’m essentially bedridden as a result of using crutches for so long, my rotator cuffs are sore and inflamed and my right leg is starting to lose strength. The pain is somehow getting worse. I have to take more painkillers at higher doses just to keep me comfortable. Nothing else has worked to relieve the pain (steroids, NSAIDs, etc.)
I don’t have another doctor visit until the 17th. This will be with a geneticist from the University of Miami to conform my Ehlers-Danlos diagnosis and hopefully determine which type I have.
However, this will do nothing to solve the problem of my herniated disc. I can’t have any surgery done until my heart problems are worked up and I have tests done to determine if I am allergic to some types of anaesthesia (malignant hyperthermia). I don’t have a clue when these are going to be resolved. Basically, I’m falling apart faster than I can be fixed and it is driving me mad.
My family wants to just put me in hospital for a while to have a complete work-up done by all the specialists I need (like we’ve been recommended to do). I suppose we’ll chat with the geneticist to see if UM can accommodate that.
Praying to something that I make it until next Wednesday.
Over the past two weeks, I’ve been in intense back and leg pain, which have caused me to use crutches. Come to find out that I herniated a spinal disc and am one of those people who may have to get surgery for relief. Of course/ lucky me.
I was also informed that I have a heart murmur and possibly a leaky valve. My eye sclera is disintegrating. I need to see a haematologist. My rheumatologist suggested I go stay in a hospital like Mayo/Cleveland Clinic so I can be worked up by all the specialists I need.
It’s a horrible thing to feel my body falling apart so young. My disease is catching up with me and won’t let up slightly on the problems. I can’t shake the thought that I’d rather die than live through this torture anymore. I despise the part of me that thinks that. Sometimes my dog is the only thing that stops it.
I’m struggling. I’m crying too much. I pray, but I don’t know if it works. I’m desperate for something to indicate that this will get easier.
Today is gonna be one where I don’t leave my bed because of the pain and fatigue. Ugh.
Yet another doctor appointment today. This podiatrist wants me in orthotics. I got fitted for them and was told to buy a good pair of trainers and wear them 24/7. The superficial part of me is rolling at the fact that I have to wear sneakers instead of cute booties or flats. But practically, I know it will be more beneficial to follow his instructions. Guess I’m gonna have to find some fashion sneaks?
I’m grateful to have my family’s support right now. I don’t currently live at home, but over summer holiday, it has been nice to have them around. I’m departing again in a few weeks and will be alone for almost 4 months. It’s going to certainly be difficult, but at least I don’t live across the country, just the state.
I was yet again told today that these orthotics are going to “cure” me. Momma has bought into it of course. She’s already convinced these will be the solution to all of my pain problems. I am not so blindly optimistic. If they will help, I’m not sure… But until I see or feel a change, I can’t put full faith in anything. So many doctors have insisted on finding the thing to help me, and so far there hasn’t been any damn miracle. I hate to be negative, but I believe I’m being realistic. There is no simple cure to this problem. That is what I am sure of currently.
My physical health has been declining rapidly since my disease has progressed. I have always had strange joint problems, but it was never suspected that I had a potentially debilitating condition. My illness affects all of my joints now, large and small, as well as my internal temperature, blood pressure, heart arrhythmia, etc. I can’t go a single day anymore without a dislocation or a subluxation. My symptoms are so varied that it is never clear what I will be up against hourly. I am unable to do generally anything that requires me to stand up or walk for more than 5 minutes at a time. Regular housework, personal grooming, and daily errands have become increasingly impossible. It has honestly been depressing. Especially with a majority of the doctors I’ve seen insisting that my anxiety or depression is causing these physical issues. It is hard to explain chronic and invisible illnesses to those who have not experienced them. Having a rare and misunderstood illness is even harder to illustrate. I’m finding it more and more important to advocate for my disease, and work a way towards finding relief and hopefully a cure.
I have been told countless times that I look fine, happy, and healthy. This photo depicts that girl, but it is an unfortunate façade. I suffer every day, currently with hardly any relief or help. I do try to find things that help me — reading, playing with my dog and rabbit, journaling, sketching, and many more. During times like this when I am feeling down, I must remember the little things I can still do that give me joy.