I’ve written before about my health struggles (see here). In sum, I have psoriatic arthritis and ulcerative colitis – both of which are autoimmune diseases – and fibromyalgia, which is an issue with the pain system of the body.
The good news is I’ve been awarded social security disability, for now. It’s been a two and a half year process of applying, having a stupidly ridiculous medical exam meant to exclude people from getting disability, being denied, hiring an attorney (ask me for his name if you’re in CNY and need one – he’s da bomb diggety), appealing, being denied again, appealing again, submitting oodles more paperwork, getting a doctor’s report stating I am, in fact, not able to work right now, and having a trial before an administrative law judge.
The whole process was honestly pretty degrading, except for the attorney and the administrative law judge. Both were kind. But having every ounce of your health pulled out and examined and being doubted by the system the whole time is just simply awful.
I sadly cannot work as a lawyer right now. You don’t need all the gory details, but I’ll put it this way: I cannot conduct depositions and hold meetings and write briefs while running to the bathroom 8x times per day in an “it’s an emergency” fashion, nor can I do those things while needing 12-14 hours of sleep a day, including during the middle of the day.
I’m immensely relieved to have this little reprieve where I can get disability payments while I work on my health. It’ll be up for review again before I even know it, but at least, for now, I’ll have some income to help out our household. Funds have been tight. Both our cars need replacement. We need a new roof. We haven’t had the cash to do those things and the car repair payments are taking their own toll. Most of y’all know what it’s like to be broke. I don’t need to elaborate too much.
After getting the judge’s decision granting me disability, I’ve felt like I can breathe again.
The other good news is that I’m on a new-to-me drug called Stelara, that I just started about a month and a half ago. Getting it, too, was a ridiculous runaround. The manufacturer dropped the ball somewhere during the process of getting the drug to the specialty pharmacy, and I had to spend hours (literal hours) tracking down what had gone wrong and where so that I could get my first shipment of the drug. It delayed treatment by about a month. A month of not being on any immunosuppressants and feeling like poo. Heh, literally.
A month and a half in, I’d say I’m about 20% better. I’m hoping for more as time goes on. This is not a quick fix sort of medication. But I have some hope for further improvement, which is nice.
I’m also switching to a new gastroenterologist – I see the new one next week for the first time and I’m super excited about it. The one I’ve been seeing has been better than any I’ve seen in the past, but also kind of terrible in some ways. I’m hoping for more proactive care. I already have a fantastic rheumatologist and PCP, and it took me many, many years to find them. Having a good medical team is huge.
What’s it like being home all the time on disability? Aside from the obvious (painful and feeling tired and icky), it’s a mixed bag.
I love being home for my kids before and after school.
I love being able to snorgle cats in the middle of the day. In fact, one is resting his fuzzy head on my right thumb as I type this. It’s awkward and too damn cute to interrupt. My right arm is falling asleep.
I love that if I have the energy, I can read, I can paint if my hands are feeling good enough, and I can write. If I were working and this ill, I could not have an ounce of time free to do any of those things at all, ever. I sleep too damn much. A commute alone would consume the only non-working waking hours I would get. Disability is making it possible for me to wrest some enjoyment out of life still.
On the flip side, I loathe being unable to complete simple tasks like cleaning activities around the house. Most days even showering is hard – that requires a lot of spoons because of all the sensory input.
Yesterday, I bought some chairs off FB Marketplace for our dining room table. It was long overdue – we’ve had the most motley collection of IKEA and falling-apart garage sale chairs for a long, long time. Before that we had chairs we’d refinished that had come from an old shoe store that had belonged to my husband’s parents. We’ve never had decent chairs with our lovely table. So when I found these on Marketplace, I jumped at the chance to snap them up. But my husband was working yesterday, so I had to go get the chairs on my own. It took me the ENTIRE DAY to get car seats out of my car and get the seats folded down, get the chairs in and then out of my car, put car seats back in the car, and get the chairs in the house. Like, really?!? It was a low energy, high fatigue, and high pain day, and that task – that would take my husband 45 minutes including driving time – took me a damn day.
I never did manage to get the old chairs into the barn. Seth did that when he got home after a 12 hour shift nursing on the hospital floor.
Sometimes that stuff really gets to me.
Sometimes it really gets to me that Seth has to do more than he should have to around the house because I can’t keep up with it all.
Sometimes I feel like I’m no longer contributing to the world in ways that I once enjoyed because I’m not working.
Thank heavens I’m naturally an optimist and not a wallower, and thank the gods above I have a terrific psychiatrist who helps keep depression and anxiety at bay. I can see how those things could easily run the zoo.
With regard to fostering, my health is one of the many reasons we are retiring. I’m ashamed to admit I am eagerly looking forward to Sunny going home so that the stress levels in my house can go down. Stress makes inflammation worse. I’ll write more about that stress soon. Just suffice it to say, spending spring break with her family made us all certain that Sunny being with her family is the right choice, and that waiting for the time for that to happen is torturous for all of us.
I desperately miss the 2 and 3 year olds. Will we ever foster again? Maybe I would but I don’t think Seth ever will. The agency bull$hit has been too much for him, for good. It probably should be for me too. But like I said above, optimist here. I’d have to get healthier before I could handle any other kids anyway, so I think it’s probably for the best that Seth is completely burned out for good.
I try my damndest to be proactive about doctors and medications and sleep and exercise and diet – all the things I’m supposed to do. I fail at a lot of things because my health gets in the way. But I just keep plugging along because that’s how I am.
And for now anyway, I’m going to enjoy the hell out of my family of 3 (plus cats).
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