The Past and the Future

Posts tagged ‘autoimmune’

Let There Be Light

Well, it’s been a bit. Again. I had a lot to slog through, as you can see. I was in a dark place for a few days. I needed to just breathe. I got my footing back. I gave myself a bit of a slap across the face and a reality check. I’m a realist in the end, and emotions are not my thing. I don’t handle them well and I let them overwhelm me. LET them. It’s a choice. It’s like going for a swim. You can wade in and let the water just gradually increase, and it can be a memorable (if not enjoyable) experience, or you can just jump in the deep end and almost drown; terrifying and unsettling.

I gotta remember to wade in. I am not a jump in and swim person, dammit, not when it comes to emotions, anyway.

Ex-boy and I worked it out. We’re good again. Conan is going well actually, with new folks filtering in. Roleplay is moving forward and while new people are stressful, its enjoyable. Again, the wading thing. I even have some old friends wandering by. I just needed to give it a little time. I am not a patient person. I want it to happen NOW and I hate waiting. I hate wading; even when I know it’s what is best for me. Sadomasochism. Go me.

Waiting. Wading. God love the english language.

So, about my health. I have been struggling with some pretty scary symptoms for about 3 weeks now – chest pains, shortness of breath, tight chest/breathing, dizziness, disorientation. I went to the ER and they found nothing but a raised d-dimer (clotting). I had a barrage of tests that turned up nothing; no heart attack or heart issues as per normal – I’m the healthiest fat person you’ll ever meet (normal if not low blood pressure, normal cholesterol, “normal” blood sugar/A1C [high but within normalcy], normal heart rhythms [with some weirdness but nothing alarming], some oddities in the blood work but nothing overtly alarming [etc, etc.]).

This is on top of a slow decline in health over the last 5 years – slow increasing levels of all over body/joint pain, exhaustion, emotional exhaustion, sleeplessness, increased disorientation/brain fog, eye irritation/gumminess, intestinal issues, and vicious headaches. Last year I suddenly had a fever that lasted 6 months, until I sussed out (not my doctors, mind you) that it was the antihistamine I was taking to help me sleep that was spiking my overall body temp. Turns out when you naturally don’t sweat much, you shouldn’t take antihistamines for a long period of time. Noted. It’s a body chemistry/cell respiration thing. Anyway.

I had a barrage of tests over the last five years. I have a positive ANA and positive for HLA-B27. I’ll save you the google search – it means that I likely have some kind of autoimmune disorder. HLA-B27 is one of those, the more known of which is Ankylosing Spondylitis. Now, this used to be thought to be MEN ONLY and only recently was found to be in women too, because they actually started LOOKING in women. The specialist they sent me to however, said that it was only for men, I’m fine, I’m just a fat woman, and sent me home. He can go fuck himself.


I have no idea if I have it or not, for that reason. /shrug

In the course of trying to discover why I had a fever, I was tested for everything communicable you can imagine. I don’t have HIV or anything else awful. I suppose that’s good, right? I do have some kind of strange live immunity to a fungus known only to the Southwest USA, but no one could explain that. I tucked that into the “Clue A” department and let it go. I was released back into the wild with a pat on the head and a “We have no idea” until I sussed out the antihistamine bit on my own.

I did join a support group for Ankylosing Spondylitis and found out that there’s a lot of women with a lot of the same symptoms as me, so I likely have it. It’s not really treatable at this stage, so it’s just suffer and deal with it. But at least that’s likely something that I have.

I tested positive for an allergy to barley when I was nine, and kept eating it and wheat and everything else until I was well into my 40s, until a doctor pointed out that I likely have Celiac’s and told me to stop eating all of it. I did. I felt a lot better after that, and still work under the assumption that I can’t eat gluten and have Celiac’s but honestly, I have no idea.

I also eat like I have Crohn’s because I also can’t eat seeds and other things that are more like Crohn’s than Celiac’s (raspberries, strawberries, popcorn… it’s a long list. /sigh).

All this because I have been desperately trying to not feel like shit for about 12 years. Without any goddamn help from doctors, who have been largely clueless. If they can’t throw a drug at it, then they don’t seem to care.

I just want to feel better, and it’s been a slow decline like a rock rolling down a hill, speeding up to a discernible degree over the last 5 years with no slowing in sight, and I won’t lie, I’m a little scared. I can see the pattern and do the math. Do I have to drop dead before they’ll do anything? The easy answer is? Yes. Yes I do. And I refuse. So I keep reading, and searching, and studying medical journals and research trying to find a clue.

The chest pains were a wake up call, let me tell you. I was like, jesus, they are going to let me die.

Well, I didn’t die – obviously. I’m still here. It hurts. It sucks. I can’t take a deep breath, but I’m still kicking.

I saw my regular doctor and she listened, and listened to my chest. She said, you are breathing tightly. She did a nebulizer and all my symptoms lifted.

Like fucking magic.

What. the. actual. fuck.

Well, so asthma is a thing. I know that. I DO! I’ve known people with asthma my whole life. I know what a nebulizer is. I had foster children I had to give one to. I understand it. I just had no idea you could HAVE it and walk around.

I also never mentioned, to ANYONE, that I have 11 cats and I’m allergic to them. And dogs (3). And pollen and mold and mildew (and I live in an old house surrounded by a prairie). Anyway.

My doctor just -stared- at me. “You’re not kidding, are you.”

Ok so it turns out we have nine, not eleven. It’s not like I pay much attention – they’re not MY cats. I have two that I like, that like me. The rest just sort of do their thing, and they belong to my kids. I don’t feed them or do their litter. That was part of the deal because I’m sick of the buggers. Yes, I see the irony in that, hush. Anyway.

So. It turns out that if you’re allergic to something and you do it anyway, it makes you sick.

Shut up.


So, I’m on allergy meds. An inhaler with a spacer. Yes, a spacer. No, not a handsome man that drives a spaceship. No Han Solo in my house, sadly. It’s medical equipment that ensures that the medication mixes with the air before you inhale it.

Fun fact – it looks like a little bong. This amuses me to no end. Back to the point.

Allergy meds. An albuterol inhaler. A spacer. An order to have my husband vacuum and dust daily. An order to get air cleaners in every major room immediately. A long term order to reduce the number of pets in my house as soon as possible. Eh, that will take a while.

BUT it does mean that perhaps, I am a little closer to feeling better? Maybe?

Here’s hoping. More later, taters.