The ramblings of a human piece of flesh who has a chronic problem with passing out due to Ehlers-Danlos and dysautonomia. On the internet; I get myself into unintentional predicaments that make me quote the great James McNulty of The Wire, "The fuck did I do?"
I my heart rate went up to 103 and I got clammy just from putting on pants.
I went to Dr. Grubb today. He said the moment he looked at me he knew what I had. I have Joint Hypermobility syndrome aka Ehlers-Danlos. Pretty much the best day of my life in a decade. He is the best doctor in the world.
Going all the way to Ohio just to see this doctor on Friday. It better not be a fucking let down. Though I’ve heard great things about him.
I finally got in to see Doctor Grubb! October 11th! I’ve been waiting for almost 2 years for this.
Now I have to type withe my left and on my i0od because my right hand is numb and weak from whatever is going on with me neurologically
I’m getting a goddamn second opinion on my chiari malformation because no normal, asymptomatic person HEARS and FEELS clicking/squishy sounds coming from the bottom of their skull. I’ve been having these clicking attacks for days, I’m nauseous, my swallowing is impaired, I have a skull crushing headache, and I’m having near fainting events everyday. I completely loss consciousness today and my heart rate has been above 88 bpm the entire day.
Seriously. The polydipsia is gotten so crazy that I can’t sleep due to constantly peeing then having to drink more water.
Invisible Illness Week’s - 30 things
1. The illness I live with is: Dysautonomia, neurocardiogenic syncope
2. I was diagnosed with it in the year: 2011 with NCS and dysautonomia in late 2012
3. But I’ve had symptoms since: I’ve always felt physically strange since I was a kid. But the illness got worse early 2010
4. The biggest adjustment I’ve had to make: Not being a full time student and or having to take off school. Not being able to drive most of the time due to randomly fainting. Not being able to work
5. Most people assume: I’m being over dramatic. That it’s all just anxiety or depression
6. The hardest part about mornings are: Getting out of bed slowly enough so I don’t faint. Trying to get to my beta blocker when my legs are weak and my heart is racing.
7. My favorite medical TV show is : Monsters Inside Me
8. A gadget I can’t live without is: iPod Touch
9. The hardest part about nights are: Constant insomnia and the fact that I’m pretty much tolerant to every sedative known to man (except weed but I run out of that all the time). Chronic neck pain. Restless legs and body. Racing heart and pounding headache.
10. Each day I take : Atenolol, Lexapro, Reclipsen, Klonopin
11. Regarding alternative treatments: Weed and ASMR
12. If I had to choose between an invisible illness or visible I would choose: Visible. Just so I feel people will take me more seriously and not pin it all on my bipolar and anxiety. I’m anxious all the time because I most of the time have absolutely no idea when I’m going to faint. Who wouldn’t be out of their fucking mind?
13. Regarding work and career: Had to medically withdraw from school. Working seems to be out of the question unless the job requires me to sit most of the day
14. People would be surprised to know: I can’t work out because it causes me to faint. Even a brisk walk on a treadmill. I fainted during my stress test. That is medically documented so I’m not making this shit up.
15. The hardest thing to accept about my new reality has been: How isolating this illness is. I miss my friends dearly but the unpredictability of my illness makes me unable to go out and see them. I’ve become so weak that I can’t spend as much time with my family because I need more sleep to be even able to wake up and function somewhat. I can function normal only about five hours per day, after that I have to find a bed and rest. My life has come to a standstill. All my friends are graduating college and studying abroad and I’m stuck in my house all day.
16. Something I never thought I could do with my illness that I did was: Be my own advocate.
17. The commercials about my illness: Don’t even exist.
18. Some things I really miss doing since I was diagnosed are: My friends. Being able to sprint down the beach. Working out, skiing, horseback riding, hiking, exploring the forest, going outside and taking photos.
19: But it was hardest to give up: School and my social life. Working out.
20: A new hobby I have taken up since my diagnosis is: Tumblr, reading, long hours of video gaming.
21: If I could have one day of feeling normal again I would: Have a full day with all my friends and family.
22. My illness has taught me: Time goes by fast.
23. Want to know a secret: I think about getting high all the time to escape this reality.
24. But I love it when people: Take my illness seriously. Realizing that I’m not at fault for this problem.
25. My favorite motto, scripture, quote that gets me through tough times is: “Children sing the church choir at the newly built church. When ever I walk past it, my heart screams. There’s no forgetting the Past, the Present, or the Future. Will only the believers be led to salvation? That’s stupid. Why can’t we be perfect? Why can’t it be?”-Dir en grey
26. When someone is diagnosed I’d like to tell them: Be your own advocate. Don’t let a doctor make you feel like you are crazy or that it’s your fault. Do as much research as possible and talk to others with your illness.
27. Something that has surprised me about living with an illness is: The strange things that can trigger it.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom always has my back. She’ll get me water and salty food when I’m unable to get up. She takes my illness seriously.
29. I’m involved with Invisible Illness Week because: Because people like us need a voice.
30. The fact that you read this makes me feel: Like more people care.
Fuck my dysautonomia and my over sensitivity to drugs.
There’s a year waiting list to see Dr. Grubb. Looks like I have wait longer to figure out what’s causing my dysautonomia.