#doctors

Hey everyone! I have a question for you all.

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.

[tw: medical fatphobia, mention of disordered eating]

I have high blood pressure. I’ve had high blood pressure and have been on medication for it since I was in my late 20s, thanks to genetics: my mom and dad both have been hypertensive since their late 20s, all my grandparents were, and my brother too.

I’m also fat. I don’t look especially fat, but I’m obese according to the BMI charts.

Yesterday I saw a new doctor for the first time, and my blood pressure was elevated as it typically is in doctor’s offices, since I have white-coat syndrome, which means my blood pressure is usually higher in a doctor’s office. After a bit of discussion about that, and about the fact that when I check my blood pressure at home it’s typically within the normal range, the doctor said, “Well, first of all I would definitely recommend that you lose about 20 pounds, that would definitely bring your blood pressure down.”

This new doctor, who had known me for all of ten minutes, didn’t ask me about my eating or exercise habits, or see a single blood test result before recommending that I lose weight. For all she knew, I had a history of disordered eating and that suggestion would trigger me into resuming unhealthy patterns.

Aside from hypertension, I’m pretty healthy. I have consistently good blood sugar numbers, good cholesterol numbers, good thyroid numbers, all those other numbers that are actually indicators of one’s health. I eat lots of whole grains and nuts and fruit and vegetables, I’ve never smoked or done recreational drugs, and I rarely drink. I exercise regularly and try to get enough sleep.

As it happens, I did lose a significant amount of weight a few years back, after my younger daughter stopped nursing, and it had exactly zero effect on my blood pressure. For me, the high blood pressure seems to be entirely genetic.

The more I think about how casually and immediately this doctor who barely knew me suggested weight loss to me, the angrier I get about it.

I’m getting an iron infusion tomorrow then again a week later. Hopefully that will help with my constant need to nap. But the pressure in my head is getting worse. I can’t get an MRI until this Corona shit calms down. In the meantime I’m fucking dying. I don’t know what to do. I need something to help with the pressure and pain. And I’m told to “hang in there”. Fuck you and fuck everyone for punishing me and trying to make me feel bad for attempting suicide.

Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~

“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.”
“My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today)
OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….”
Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.”
“Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)”
#Truestory

I’ve always felt really lucky with my doctor, but today really drove home just how much I lucked out with him, especially after some of the absolute horror stories I’ve seen.

I’m fat. Very fat, some would say. My doctor has never made me feel ashamed of that. He’s never dismissed symptoms I’ve had for my health issues by trying to get me to lose weight. And I’ve had plenty of doctors who do that.

Today I had a follow up for some blood work because I have an enlarged thyroid. My cholesterol is a bit elevated since my last test, but still in the ‘normal’ range. Not high enough to need medication, but still enough that we discussed some ways to lower it. He’s focused on diet because I’m physically disabled which rules out most exercise. He’s also ordering more tests to make sure that it isn’t being caused by a liver problem or anything like that.

Then he went on an angry rant about how fatphobic medicine is irresponsible and dangerous, and how a lot of patients who are overweight and have health issues are overweight because of the health problems, not the other way around. So patients like me with limited mobility, or people with pcos causing weight gain and that sort of thing.

I almost left the office crying because I’m so used to specialists being like ‘Oh yeah, your joints don’t work because you’re fat.’ as if I walk on my fingertips like a fucking horse, that even though he’s never been weight focused in my healthcare, I still wasn’t expecting him to be as supportive as he was.

Today I want to share with you something very crucial that happened in my country. 

Yesterday (May 15, 2020) in Poland a pro-life (anti-choice) activist Zuzanna Wiewiórka was honored with a medal of justice. 

(”Stop hate for life defenders”)

She have been harassing a seventeen years old girl, who wanted to have an abortion due to risk of death. The teenager was seeking help online and she was found by the activist, who stalked, blackmailed and sent her pictures of aborted babies.

Moreover this is not Wiewiórka’s first action like that.

The girl refused changing her mind about abortion, but the activist was unstoppable and got information (most likelyillegaly) about her child’s father and her family in order to tell them about young girl’s plans. The family locked her at homeand she is apparently struggling with side effects of a failed abortion made with non-medical tools.

Zuzanna Wiewiórka also said that “Blowing up clinics offering abortions is a good way to prevent murder and killing doctors who provide abortions is crucial to stop killing innocent”.

What’s more Zuzanna’s brother Maciej Wiewiórka supports his sister. He said that “Sometimes rape is the only chance for a man to have sex”. I do not even know how to comment that I will leave you with that.

How could someone who technically took away that young girl’s life get a prize for saving a life?How is she called a hero?

I wanted to mention that anti-choice activist try to take advantage of epidemy and lockdown that makes strikes impossible. Their actions do not seem like life saving at all. 

I am shaking right now. I cannot even imagine how the poor teenager must be feeling. I definitely do not want to live in a world like that.

Please share! Spread the news, we have to resist this madness.

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Something I never knew -even as a trans disabled person- is that there is a Disability Day of Mourning every year on March 1st. Much like with Trans Day of Remembrance keeping a list of the trans victims of murder, a list of names of the KNOWN disabled victims of filicide (killed by caregivers and family) is kept and published on disability-memorial.org . They ALSO publish a tool kit to help you do something about it.

This year there are over 60 ~recorded~ victims of filicide. For a list of names please visit disability-memorial.org (also in the QR code). Disabled Hikers(instagram&facebook) also has posts which feature the list of names.

I keep stressing “KNOWN” victims because obviously the deaths of disabled people are usually seen as something else, even if they were caused by the mistreatment or embedded ableism of their family or doctors. I know of an autistic child, for instance… who passed away in his sleep while under the temporary care of extended family… Quite likely an unintended effect of over-dosing him on meds they were unfamiliar with that day “just to make him easier” (its all been said before) but in truth we will never know for sure. There are many unseen stories just like that.

And this is to say nothing of the deaths invoked by systemic ableism in other ways - or the subtle but fervent genocide of millions of disabled people who have been sacrificed to covid…

We all spend a lot of time on the internet. Please take at least a few minutes today while online to read the names and check out the Tool Kit.