One Thousand Words

I have a skin condition called hidradenitis suppurativa (note: explicit medical photo at link) that causes abscesses to form on certain parts of my body. I have one that recurs fairly regularly on my waist, a little toward the back. I'm very careful about what kind of clothing I can wear because friction can aggravate things. Too-tight waistbands, belts, etc. can really do a number on me. However, it also flares up on its own regardless of what I do or don't do which is one of the big frustrations of this disease.

Sometimes I get absolutely searing pain in my back not too far from that area, and then a few days later I develop a very large abscess that sometimes needs to be treated with very powerful antibiotics. Other times I self-manage it with antimicrobial soap and topical ointments, heavily bandaged. The inflammation from the abscess often causes pain through my body, especially my joints, and leaves me feeling drained.

I'm afraid that this back pain means I'm about to sprout a truly awful abscess. I'm going to try and make an appointment with my dermatologist on Wednesday for an evaluation and discussion about antibiotics and also going back on Humira. I also need to schedule a skin check.

But it's also possible I just... pulled a back muscle while tucking in my shirt, just as I once tore my meniscus while putting on a pair of pants.

Human bodies just suck.

More about The Blood Doctor appointment on 11/11.

I had what seems to me and friends I've talked to, including some with actual medical backgrounds and one who's a literal nurse, that I had a DVT after a bad fall. Before the meniscus surgery, even! And doctors etc kept dismissing it. The ER dismissed it when I rolled up with a foot so swollen I couldn't wear a shoe.

A little more than a year ago I had a pulmonary embolism (at which point the massive swelling, heat, and incredible pain in my leg cleared up). One of the treatments for a PE is an anti-coagulant (commonly called "blood thinner") and I've been on that ever since and I hate it for uterus-related reasons I shan't go into detail here. So I saw The Blood Doctor to see if she thought I could finally get off this shit. She asked a bunch of questions about bruising and bleeding and other than my super shitty periods I'm pretty normal. I even fell down REALLY hard a few months ago and got only normal-levels of bruising.

We talked a lot, she got my medical history, and when she asked how many pregnancies I'd had I said one viable one and a bunch of miscarriages including one early in the second trimester. She asked, of course, how many is "a bunch" and I said well, at least five. Except for the one, they were all really early... only about a week after my period was due. "Well, how do you KNOW you were pregnant?" Pregnancy tests.

Our plans for a family involved having two or three kids. I feel incredibly lucky that I have the kid that I have. Having more than one would absolutely have put a big financial squeeze on us, and only having one kid means we can do so much more fun stuff with/for them including summer theater camp.

The doctor suggested I have a clotting disorder given my history of miscarriage and my surprise-to-everyone-else pulmonary embolism. So I'm having a lab steal all my blood to test for that and the fact that I mentioned my history of miscarriage to every doctor I've seen including two different gynecologists and have never had any of them suggest this might be an issue is really infuriating. Just absolutely... absolutely infuriating.

And I got really upset, like hey this could have been addressed, I could have had the family we planned for. This could have been treated. But that would mean I wouldn't have the kid that I have... who is the best kid in the world. Sorry to all you kid havers out there, your kids are second or possibly third best. My kid gets the prize. I think if I hadn't had any kids at all I would have been absolutely devastated by this but I lucked out and have the kid that I have.

And, you know. Maybe I don't have any kid of clotting disorder and I just was unlucky until I was lucky. I don't know. But nobody even brought this up. Nobody ordered tests for this. And one of the symptoms of a specific miscarriage-causing clotting disorder is problems with B12... which my general practitioner has noted in blood work before as causing the persistent anemia nobody seems to care that much about.

I'm frustrated.