This is Autoimmune…

I normally try to keep my posts humorous and hopeful. Today I wrote something for myself, and I wasn’t going to share it here. It was negative and full of woe, because some days aren’t great. So I get it out in a way that works for me, in this case written words. As I have said before it is ok to not be ok, to have an off day. You can spend some time there if you must, nurture yourself, but then put on your big girl pants and move on.

It has become second nature. Get up in the morning, make myself something to eat,sit down, swallow a shit ton of pills, shower, feel dizzy and lightheaded for most of the morning, grin and bear it. A year ago I was healthy, an avid runner, and well rested. I have been temporarily robbed of that person by frigging IgA Nephropathy, an autoimmune disease. Antibodies went into overdrive, formed chains, got trapped in the filters of my kidneys, and silently wreaked havoc for god knows how long before it was finally discovered. Who the hell does this happen to?

Almost 3 months in on Prednisone, and I want off this train. I was not prepared for how difficult this course of treatment was going to be. I have new found appreciation and respect for my patients that have to be on Prednisone for longer duration’s and at higher doses. I heard the horror stories, knew about the side effects, but overall I was so ill prepared. I have gained weight, decreased overall activity levels, experienced severe mood swings, yelled at my children more times than I want to admit, and broke up with my boyfriend. Sometimes I just want to avoid social situations because I don’t want to run into people, and try to feel normal. The physical difference is dramatic, and I wish I could say I was strong enough to not let it affect me. Unfortunately I cannot. My clothes don’t fit and have no energy. I try to find the humor in the situation, but some days that proves very difficult.

I am on 3 blood pressure medications, diuretics, steroids, acid blocker, fish oil, calcium, and Vit D. I sort my morning and evening meds weekly into separate pill organizers to make it easier on a daily basis. I try to fight the effects of the medication, but they still rear their ugly heads. Each morning I wake up fluid has built up in my face and neck over the night. It takes awhile for this to diminish. My ankle and lower legs swell up through the day. Prednisone can, and has in my case redistributed fat, and in the strangest places. If you don’t know what moon face is check out my picture above. My skin is always a lovely shade of red. I get up slowly from a sitting position because I may become unsteady and dizzy. I swear I wake tired, and that doesn’t change much through the course of the day. My mood swings are ridiculous, and I am in a constant state of agitation. I probably should not be making major decisions for myself until I am off the Prednisone, and question some of the ones I have made. I also get short of breath with even minimal exertion, and can’t remember shit. The diuretic needed to be reduced because it was causing involuntary muscle contractions in my hands. This came on while I was combing my daughters hair, causing us both concern. In short, I am a mess. I am hopeful that once I can come off of this medication I will be less of a mess.

And breath…The truth is there probably isn’t a lot of speculation going on about why Niki and Jessie’s mom gained weight. People are busy living there own lives. The fact that my pants make me look like a sausage link isn’t on anyone’s radar. Honestly, do I really care if it is? I do not. Because this is what autoimmune looks like. It is silent and sits in the background. There are no clear signs that someone is suffering. It presents differently for different people, and different diagnosis. It is intermittent and chronic, and effects people to varying degrees. I know it could be so much worse, and I am grateful for a diagnosis and treatment plan. Today it kicked my ass, but tomorrow I will show it who’s boss.

So thank you for indulging me in my rant. I am glad that I got that out, writing is very cathartic for me and I honestly feel better. My apologies for the negative spin, but today it is the most authentic thing I could give you. I release it here, to make room for the positive.