For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.
Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?
I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.
-Thrown out my boarding pass while saying to my mother, “it’s okay she’s in a wheelchair of course someone will just give up their seat for her”
-had staff kneel down to me and talk to me in a baby voice and say, “oh sweetie you didn’t understand me I asked you if you could walk
-been through every thorough pat down known to man
-had my wheelchair banged up to the point I had to by new wheelchair tires
-had staff talk over me and about me as if I wasn’t there
- had staff complain about me while I was being moved in a transfer chair
-was brought to a flight of stairs up to a plane and staff was shocked that I couldn’t board that way
-was sent a bus to pick me up and bring me to the wheelchair accessible boarding spot. They had to send a second bus because the first one they called for was not wheelchair accessible
And NOW, the Department of Transportation is proposing laws for aircraft that would:
- FORCE me (and other SD teams) to get paperwork proven that my highly trained service dog is well behaved and isn’t gonna poo everywhere
-FORCE me (and others) to arrive and HOUR earlier than anyone else on the flight so my service dog can be WATCHED FOR AN HOUR before deciding if we’ll be allowed to board
This is being disguised as a way to control people taking advantage of ESAs and what it is trying to do and what it will do is IMPEDE disabled people. They want to refuse legitimately trained miniature service horses. They want to make ESAs not allowed in aircraft at all. And they want to discriminate against disabled folk even more than they already do. This is not okay.
There is about a month or two left for the public to comment on the DOTs proposal. Please comment and help out our disabled community especially those with animal helpers
