Updates, Updates, Updates

I'm going to be going to the Cleveland Clinic in July to see Rheumatology, Pain Management, and Neurology. I'm hoping that someone will at least know something about EDS. According to several people, Cleveland Clinic is the place to go for Hypermobile Ehlers-Danlos Syndrome. I really honestly hope they're right. 

Honestly I'm so tired from all of this. I'm tired of fighting all the time and then something else goes wrong with my health. 

I saw an audiologist today and found out that I have hearing loss. And my brain isn't processing what I hear correctly. After I see an ENT and the Cleveland Clinic Neurologist, they're most likely going to be fitting me with hearing aids. 

There might also be something very wrong with my brain and it might be deteriorating faster than I thought and it scares me. Honestly scares me. My brain has always been my greatest strength. The fact that I was the top of my class was the one thing I always fought for. I took pride in being able to remember facts and memories and songs. And now I'm forgetting words right and left, forgetting whole chunks of memory, and having to watch everything with subtitles. It sucks.

Also, my body is getting worse and I need to use my wheelchair more often. Which I'm refusing to do right now because I'm stubborn and sad. Even though it will help me. So I should do it. Rats. Fine, I'll do it. Y'all make a convincing argument. 

I hope the Cleveland Clinic can help me improve my quality of life. I'll do whatever they want. I'll hang upside down and adopt a muskrat. I'll stand on my head and recite the the alphabet backwards (which I've never been able to successfully do). Whatever they want. 

In happier news, I've been really enjoying Brooklyn 99. It's a very light-hearted, sweet show. And Terry Crews is a complete gift to the entire world. God bless Terry Crews. 

This is a very short update, but seeing as I can't remember the last time my blog updated, here we are!

An Open Letter To Megyn Kelly

Oh, Megyn Kelly. You're trying so hard. And you say such terrible things and then have a huge segment the next day about why what you said was bad. And while you frustrate me, I weirdly find myself wanting to give you a hug. You were too radical for Fox News and now too narrow-minded for the rest of the world. You're struggling to figure out your place in today's media. And I appreciate your struggle. I was there, once. I was narrow-minded, but not enough for the community around me. I was open-minded, but not open-minded enough for the world outside of that little community. It took years of struggling, debating, and educating myself with every possible thing I could find to read or listen to in order to figure out how to think for myself and what exactly I believed to be true. I believe you to be an intelligent, interesting, compassionate person who wants to do the best you can in your job. And you're fighting an uphill battle. Against the community you used to represent and the community you want to be a part of and also, most importantly, against yourself.
After your recent horrible comments about fat-shaming, I was shocked. But so sad for you. Because here you were, exposing your weaknesses to the world in an off-handed way with a chuckle. All I could think was how horrible your childhood must have been to warp your thoughts on weight so thoroughly. And then today, in a carefully written and passionately given monologue, you told the world that yes, your views on these things are painfully warped by horrible experiences growing up. And I understand. I used to say terrible things to mask how hurt I had been. Things like, "All you have to do is exercise," when in reality, I was terrified of my changing body and wounded by constant "moo" sounds in the hallway when I passed by. People who were gay were wrong and gross, until I actually met someone who was and became good friends with them. And they weren't gross and wrong. And slowly, my world views began to change. 
For me, these changes happened my senior year of high school and continued through my college years. And I'm also still a work in progress. I like to think of myself as an open and loving person. But I know I'm not done and I continue to ask humbly for education from people who are closer to issues I am unsure about. And because I've been there, I try to be patient when confronted with people who are speaking from places of hurt or ignorance or internalized nastiness. Which is why I cannot just write you off.
It's terrifying to realize that your views and thoughts might be wrong. I keep using terrifying and terrible because it is. Because you realize how much you've missed and how many you might have accidentally hurt with your words.
I wish you the best, Megyn Kelly. Your journey is your own and I hope you keep doing the hard work of reflection and change.

New Doctor, Same Story

I saw a Rheumatologist today. He was great and thorough. We're testing for different arthritis types and some muscle diseases, but he said that he would definitely diagnose me as Hypermobile (EDS) and if the other tests come back negative, there's nothing he can do to help/treat me. He said that I should look for centers with specialists who are researching EDS and go there. He also wants me to wait until I see the Neurologist next month, as many of my symptoms he would classify as neurological in nature.

I'm happy that there are more tests to run and more specialists to see, but it is disheartening to hear that the field of Rheumatology has nothing to help me. On the other hand, it's nice to rule out an entire field of medicine as something that has possibilities. So here we are, waiting another month to see a Neurologist. And if this Neurologist doesn't have any ideas, there is another one my primary care doctor wants to send me to. And if that doesn't work, my primary care doctor is going to send me to Mayo Clinic in Phoenix. I've been to the one in Rochester many times, because it is where I was diagnosed with POTS, EDS, and PCOS. It's also the first place where the PTSD acronym was thrown out as a possibility. I have faith that they know what they're doing. Yes, Mayo Clinic is full of humans and humans have limited knowledge and make mistakes, but I've found that they're much more keen on finding out what is going on with your body than other specialists. But we'll see. Maybe the Neurologist I see next month will be amazing.

It's hard to keep going to see new doctors. It's hard to keep going over and over my symptom list. It's hard to continually explain my background and diagnoses. It's hard to keep my hope that this doctor will be the answer in check and it's harder when that hope, however tiny, gets crushed. It's weird that after all these doctors, I would still have a little hope when I see new doctors. But as silly as it sounds, it is true. My hopes are dashed every time and I cry. 

My husband and I treated ourselves to some restaurant food after the visit. We're trying to stick to the Paleo way of eating as much as possible (my Gynecologist recommended it to help with my hormone regulation) to see if it helps my overall health, but sometimes you just need hot food that someone else made.

My dogs are informing me that it is cuddle time, so until next time, friends! Stay safe, and remember that you are loved.

Triggers and Hope

Last night, I was watching The Bachelor and enjoying supplying and reading comedic commentary with my friends via a group text. I was enjoying myself and laughing, looking forward to when these particular friends come to visit me in the Spring. Then, I was reading a text and didn't notice that the next show had come on. It was The Good Doctor, a great show with excellent actors. It also happens to be a medical show. When I was recovering from my surgeries, I used to force myself to watch Grey's Anatomy in small doses and I would turn the channel when the crying and/or throwing up and/or flashbacks would begin. Medical shows now are not something I choose to watch, but I don't have flashbacks every time I see a minute or two by accident anymore. But for some reason, last night my PTSD wouldn't let me look away. There was surgery and brain surgery. And I was incredibly triggered.
I didn't realize what was happening until I found myself in the fetal position on my bed with my husband holding me tightly and both my dogs alerting and grounding me while I rocked and screamed that I didn't want these memories in my head. That I wanted to cut my memories out of my brain. That I wanted it all to stop. That I know I'm not a combat victim but that I've seen the other side and I want to forget. I want to forget it all. Every traumatic experience, every man that followed me or held me down, every cut of the surgerical knife, every time I hurtled towards the other side, every thing I've seen and felt, every hurt that has stayed with me. I want to forget.
I screamed and cried and Ray held me and whispered comfort in my ear and both dogs did their grounding skills like their furry lives depended on it and soon my sobs became less harsh and I was able to breathe again. Then, my husband told me a funny story that made me laugh so loudly that I felt my head clear like cobwebs getting swabbed out with a mop.
I thought I was getting ahead of this. But this was just a reminder that PTSD never fully heals. It is with you for life and you are not weak for not "letting it go" or "getting over it" or whatever. Many things can help you manage the symptoms, but anyone who claims to have a cure is selling a load of horseshit. This is a good thing to remember when posts about people changing their lives and curing incurable diseases seem to be abundant. The New Year brings new scams and new people trying to make a buck off of those of us who are sick. They know we're sick of being sick. They know we're tired. They know we're doing whatever we can to try to get better and that we feel all kinds of pressure from everyone to heal and get completely better and that we feel like we are a burden and it is our job to fix ourselves. And they prey on us. Don't let them. Don't buy their products, don't enroll in their programs. Buy products and enroll in programs that will help you, by all means! But anyone who says they can cure you is not truthful. And this is a painful thing to realize. That we're incurable. That this is with us for life. And, if you're like me, you go through multiple bouts of grieving and probably will for life. Get a support system. Get help. Get your symptoms managed. And attempt to live your best life possible. And that life can look beautiful. I promise.
This post is a mess