Thanks For The Reminder

It might sound stupid but there are times that I forget about being sick. Doesn’t happen often, but it does happen. Because the last two weeks have been so hectic, I’ve been too distracted to really pay attention to the usual aches and pains. I usually try to keep my mind busy enough to ‘escape’ being sick. I wear a medical alert bracelet and it clanks on everything, but I’ve almost become ignorant of its existence. Anyway, so since life is currently in defcon 2 status, I’ve not noticed much aside from a twinge of back pain and swollen feet.

Here I am in lala land, with Ava at her annual physical. Everything is routine, she’s a peanut like she’s always been, all golden. I did tell the nurse that I wanted to speak with the doctor about possibly getting Av some counseling since she’s still mentioning the car accident on a weekly basis. Doctor comes in, new lady, super bubbly and sweet (without being throat-punch peppy) and examines Ava before she brings the nurse back in to do vaccines. Right before she leaves, she asks if anyone in the house is immune compromised [I’ve never been asked before] and I told her that I’m on Cellcept. Since she was getting her TDap and MMR vacs, if she showed signs of a rash around the injection sight [super uncommon apparently], then I wouldn’t be allowed to ‘parent’ (doctors term) her until it cleared. Took me a minute to register that it’s because they’re live viruses and I’m on immunosuppressive therapy so one and one equal no bueno. Duh Ashley. Don’t even get me started on the theatrics before, during, and after the 15 seconds it took to do the shots.

Fast forward, Ava is clung to me like her life depended on it and the doctor turns to me and asks if I’m a worrier. I gave her my ‘girl if you only knew’ look and mouthed “big time”, to which she said, “I can tell, Ava is also”. Well fuck me. I explain to her about the accident and the effect it’s had on Ava, and I also mention to her that I haven’t found an age appropriate way to explain my illness. Rather than judge me, she was very empathetic and gave me information about a program through [our] county school district that has different resources for parents and children. I contacted the organization to sit down with someone and talk about how we can move Ava on from the accident, explain my illness to her, and learn how to manage her feelings about it. No disease belongs solely to the ‘host’, it belongs to all of us.

I dread having to really explain this mess to her. I know that she knows more than we blindly hope she does. She knows that I take medication every day, she knows that I need time after I take my medicine before we can play, and she knows that some days I don’t feel well. She’s asked me a handful of times what my medicine is for and I give her a generic answer, like “to make mommy feel better” or something to that sort. She does ask why I take so many and when she’s with Dan or I on a trip to the pharmacy, she gets sassy and says “ugh, mommy needs more medicine AGAIN”. Yup, that’s my mini me. It was easy to explain going through the SCS trial and surgery itself. I told her that my back hurt and that once I had the surgery, I would feel yucky for a little while but in the end, I would be able to do way more fun things than I can now. All of which is true. I can kind of explain my shoulder injury when she does ask but then it just opens a can of worms, so I lie and say it’s all better. Part of me wishes she were old enough to understand a less sophomoric explanation. I know how to explain it using medical terminology but how the hell do you break it down that far, to make a 4 year understand? That’s the point of the program isn’t it, to help us with that.

I’ve felt guilty since we left her appointment yesterday. I feel like I failed to shield her from issues that shouldn’t even exist in her tiny world. I feel like a burden to my family. I feel like she deserves a mom that can give her more than I’m able to. It doesn’t matter how many times I’ve been told that being sick is beyond my control and I shouldn’t feel bad because of it. How do you not feel bad about it? Not a day goes by that this stupid, fucking disease doesn’t prevent me from being normal. Wanna make some coffee? Nope, let’s wait until the swelling in your fingers goes down enough that you can drip the coffee cup. Wanna go outside and do sidewalk chalk with your kid? Nope, excessive heat worsens symptoms and too much sun exposure (by too much, I mean, like an hour) can further increase your risk of skin cancer. Wanna roll around on the floor and play with your hilariously, clumsy, horse puppy? Sure, but let’s limit play time to half an hour or until your muscles begin to feel like they’re on fire.

And what really gets me, is that I’ve been doing everything by the book, like my doctors ‘mapped out’, and I only get worse. Why does it keep getting worse? There are people that have had MCTD for decades and have never been on anything stronger than a steroid to manage their symptoms. I can’t go six months without having mine progress. That’s bullshit. How the fuck is that fair? Why can’t that be me? No one can tell me why I keep getting worse. I have damn near 20 specialists and not one can tell me what in the fuck is going on inside my body. HOW DOES NO ONE KNOW?! I get my blood drawn for testing so much, I have a permanent indentation [in the crease between the forearm and bicep]. I’ve been tested for every Endourological, Rheumatological, Hepatic, Hematic, common, rare, genetic, not genetic illness imaginable, TWICE. Nothing. No explanation. I’ve seen more than one practice in over a dozen specialties including Duke, which is supposed to be the gold standard around here [for the record, most of their doctors’ suck].

When is the bottom going to drop out? That’s the next logical step, right? First it was, take this anti-malaria pill that weirdly works as a [relatively] harmless immunosuppressant. Then it became, well that dosage stopped helping, let’s go up another XYZ milligrams. Next, well that drug stopped working all together, so why don’t you try this, more aggressive, but not super scary, immunosuppressant. Oh, that one made you feel like death? Try this one instead. It works? Awesome, great. Ok, your numbers don’t look that great, lets increase the dosage and see what happens. Repeat that a few times. Looks like that medication has stopped working as well. Let’s go ahead and try this admittingly more aggressive immunosuppressant. Watch out for these cancers, make sure you don’t take these supplements or medications, and stock up [even more] on sanitizer. On the bright side, you don’t have to take the weird anti-malaria drug anymore because this medication does the work of both drugs! I can already smell a dosage increase on the horizon.

Is it overly pessimistic to sometimes wish that I get the flu and can’t recover so it’s game over? A little huh? Best I can do for now. End rant.

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