#autoimmune
Just going to whine about something personal for a minute here -
I am So. Tired. of having these tissue expanders in. I did not expect - at all - to be on the surgery waiting list for 8+ months following the double mastectomy last year. Sure, relatively speaking that isn’t a great deal of time. But I also feel like I’ve had about a grand total of two nights of decent sleep in the last 8+ months because I’m so bloody uncomfortable 24/7. And the tissue expanders are just a bitch piled on top of a mountain of absolute bitches of chronic health issues. I’m so tired of being uncomfortable and in pain 24/7. Doctors are generally useless and I’m tired of hospitals and waiting rooms. So bloody tired of it all. Especially tired of the fact that Covid has meant they’re not currently booking elective surgeries so the implant swap surgery is some indefinite time months ahead in the future.
The only thing I can do is endure a little longer and try and be as well and content otherwise as I can.
Making a concerted effort to compartmentalise doesn’t stop days like today, though, where I just hate having a body, especially one that hurts and feels sick in some way nearly 24/7.
The only two pieces of advice I can offer anyone in a similar situation is:
- you’ve probably heard the phrase “pain is inevitable, suffering is optional.” To a large extent this is very true. We have more control over the degree of suffering than we realise. Chronic health issues might mean I’m in some level of pain 24/7, but whether I suffer from that 24/7 is the result of a series of choices I can make for myself.
- Focus on the days or moments when you’re not in pain. We spend all this time thinking I’m in pain, everything hurts, and often don’t spend time appreciating the bliss and relaxation that comes with not being in pain. Those are good days. Take a moment to bask in those moments and acknowledge the exist.
If anyone is wondering what might have brought my ability to feel joy back, there are a couple different potential things that could’ve done it. It’s my brother’s graduation so a lot is happening today. I increased my Wellbutrin dose a few weeks ago. I started taking Sulfasalazine about two days ago to try to treat a potentially autoinflammatory condition (Yao syndrome) that may be causing my daily fevers. It would be interesting if the anhedonia is inflammatory. I also restarted Plaquenil for autoimmunity about a month ago. I’ve never been on this dose of Wellbutrin before. I was on 100 mg (plus Prozac) before I stopped taking it, and anhedonia set in, and that was all soon after the fevers developed. I restarted Prozac maybe six months ago. I increased Wellbutrin maybe a month ago. Personally, I hope it’s the Sulfasalazine because that may indicate that my condition is improving. It could be any of these things- I’ll let you know if I figure any of this out!
Heating pad is not enough. I wrap myself in a heated blanket on high. I’ll just cook myself.
Systemic Lupus, APS, thyroid. And fibromyalgia and pots have stemmed from my autoimmunity.
My mind is young. Not my body ha. I look like that old lady whenever I get up from a seated position
Please?
Steroids and plaquenil blah!
Whoops
That’s right.
Be your own advocate. I research from reputable sources. I am not afraid to ask questions or ask about a test I feel I need. I am lucky my lupus specialist is a great Dr. But I have ran into horrible doctors.
Burrrr. I always have chilly, corpse looking feet!
Especially when you need meds from a specialty pharmacy and it takes three weeks to refill your next month of injections for Lupus because of problems on their part.
Absolutely not my body says!
Me potato.
Short of breath. Constantly feeling your heart beating when you’re sitting or standing.
Haaa
