#heath stuff

SO. it turns out that I didn’t get this new disease/diagnosis BECAUSE of covid, but it got much worse because of covid--which allowed my rheums to finally diagnose it (AFTER TEN YEARS RIP). dermatomyositis is really difficult to diagnose mostly because it’s so damn rare; what I read was that like 40-90 people in a MILLION get it (or, at least, are diagnosed ...), so most drs aren’t very familiar with it & don’t look for it.

Over the years a couple of doctors have suggested I have chronic fatigue syndrome. None of them have done more that the standard blood tests - like iron, B12, liver function, white blood cells, you know all the fairly normal stuff.

Technically we don't know if I have chronic fatigue syndrome, but if I do then I need to avoid PEM at all costs to avoid getting worse, and therefore need to quit my job, stop going out, stop my hobbies.

This is a big ask when they haven't even tested for at least a dozen other problems I might have. But they're not going to test for them because they say it's unlikely I have them. They're happy for me to just have this fatigue and other problems my whole life so long as they don't have to do those tests.

For ladies with vaginas and uterus, please always take care of your gyn needs.  If you are in debilitating pain or bleeding profusely do not accept some bs answer that you’ll grow out of it or its normal.  It is NOT normal.

As someone who had  crappy women’s healthcare in the 80s, and was in a lot of pain, bled so profusely I was on iron pills and couldn’t use standard feminine products, this is a sign of an underlying problem.  My doctors at the time told me and my mom it was normal for some girls.  My mother thought it odd because she didn’t experience that but she believed the doctors. 

Years went by, I got a little better and then worse.  I bled for a month and it wasn’t until my mid 20s the words ovarian cyst were mentioned. But that was quickly countered with every woman has cysts.  It’s no big deal.  They come and go.  My concern over bleeding for a month straight was shrugged off.  I was given oral contraceptives that allegedly would help.

I was so sick.  For about 3 months of nausea on and off, I lived on vanilla frozen yogurt and regular yogurt to settle my stomach.  Several times I couldn’t work and had to have someone pick me up from work I was so sick.  Yeah it helped the ovarian issue eventually - or so I thought.

Years later those pills stopped working.  My cycle went crazy.  I was told to wait it out.  F that.  I quit taking the pills and things got better.  Another new dr said she was concerned but she thought I should let my body self regulate for a while.  Nobody checed my ovaries.  No scans were ordered. Really bad idea.

Down the road another few years, more problems, tried new oral contraceptives.  A roller coaster of nausea for 6 months and I said screw this.  I can’t live like this.  Dr. said I didn’t give it enough time.  6 months.  Seriously.  Finally after another few years and  more problems and consulting with more drs I got an ultra sound.  Ovarian cysts and fibroids.  Something that should have been discovered long ago.

Another attempt at oral contraceptives and the patch which I was told later wouldn’t work because I was too overweight.  Gee thanks.

After moving into a new health care system and getting past the, well you’re fat, that’s your issue, despite having  perfectly normal blood work and no other health problems ahem, I got to a gyn (a female gyn) who told me I had a very serious problem and no it wouldn’t just ago away and no oral contraceptives wouldn’t solve this due to the severity.  She was pretty horrified at all the crap I’d been told.

One ovarian cancer scare and surgery later, I received confirmation this was an ongoing problem and had been for decades.  Oh yes, and I was now firmly on the Ovarian Cancer watch list since it had now reached such a bad stage.  The new cysts forming were filled with blood which is not good.  I was on a new oral contraceptive that blessedly didn’t make me sick - lowest dose estrogen they could give me - and over time, it helped. 

But I still live with repercussions.  Menopause visited me early.  But that didn’t stop things.  I now have bigger fibroids and an enlarged uterus pressing against things in my abdomen.  The pain has been pretty bad.  It wakes me up at night since it radiates into my back and down my legs as well as across my abdomen.  Stress makes it worse.  I’m on a different med to help with the other issues this has now caused.  I’m doing better but may have to have more surgery.  Dr. appt is next week to discuss next step.