- I showed my Rheumy the pictures of my beau's lines like dents. He said, "I don't know what that is," and left the exam room while I was still actively asking questions. Me = unhappy.
- Showed the pictures to my primary care when next I saw him--Yup. They are definitely Beau's Lines. Basically, my flare was so bad that it caused the nail matrix on the affected hand to stop growing (the cells stopped dividing) for a while so when they started growing out again, they had a gap. That just doesn't sound good. My doc was concerned but it's not his area. I asked to see a new Rheumy and he referred me happily.
- New Rheumy! I was really nervous, but she's fantastic. Very warm, listens, stays with me as long as I need. She saw me, heard my story, ordered labs, and wanted me back in a week so she'd have some time to research EDS in conjunction with Scleroderma. Confirmed Beau's Lines and looked at my cuticles and confirmed I have nailfold capillary drop out.
- Labs were my average. Positive ANA but no other markers. She tested for a rare Scleroderma maker which was negative, thank the gods!, because it's associated with Sclerodermic Renal Disease. She contacted an old professor on Sclero and asked him to review my case. Conclusion is that if someone has both EDS and Sclero, docs should NOT expect to see skin hardening. So she's not diagnosing me with Sclero, but said that she was going to treat me as though I were one of her Sclero patients.
Anyway. March is when things started to go downhill. Normally I have swelling and increased joint pain in my hands early in the morning and late at night. The swelling stayed the same, but the pain started to last longer in the morning and come earlier at night. And then once or twice a day it would show up in my feet. And then my ankles. Then my wrists. And then my knees. And then the pain was in my hands and feet equally. And then that pain tripled. It got so bad I wasn't sleeping at night. And I was keeping M up because the pains were so sharp and sudden that I'd flinch/jump when they happened.
The best way I can describe it is that it's a little like a game of whack-a-mole. I promise that will make sense in a second. In whack-a-mole you've got a little mallet and you're waiting for creepy little plastic moles to pop up so you can hit them. Well, it's like that in that I know that there is going to be this sharp stabbing joint pain. I don't know where on my body it's going to pop up, but I know it's coming. A hand this time? Or a foot? One of my knees? So I'm waiting, but I'm never really prepared and then BAM! it pops up but I don't have a little mallet or anything to fix it. So I called my Rheumy.
She put me on an 8 day round of prednisone, hoping it was a flare that we could get to calm down. The prednisone made me feel like a thousand bucks. UCTD joint pain went away (EDS joint pain wasn't really affected, but I'd take EDS pain over UCTD any day of the week). And the brain fog went away! I could think clearly again! It was fantastic! And then the 8 days were over and I rapidly went into withdrawal and spent the next 3 days either on the couch or vomiting. Not sure what I was vomiting because the sum of all my meals for those 3 days consisted of water and maybe 10 saltines.
But when the prednisone nastiness cleared, I was back to my normal! YAY! Back to my normal UCTD pain! Not perfect but I'll take it! It worked!
And then May got here. And the pain started to spread again. And it came back worse. The constant pain in my feet was so bad that I couldn't put any weight on my toe joints/the balls of my feet. I started walking on the sides of my feet, on my ankles, and sometimes on my heels. I walked less and less. If it was that level of pain on my bad days, I could do it, but it was my everyday and it just isn't a level of pain I can handle. I'm losing more and more of my mobility in my hands, but thanks to EDS, it's still more than average non-bendy folk have.
I also got my first where-in-the-hell-did-this-come-from rash. On the back of my shoulder. It itched like mad and at first looked like 3 bug bites, then swelled up like crazy to be this 3 inch circle of red. Then it stopped itching and just burned. Doc said it looked like it could maybe be poison ivy, but I'd spent the whole last week on the couch with angry don't-touch-me feet so I hadn't been out much. It's gone now and my doc's not worried so I'm not worried.
Saw my Rheumy again about the pain coming back. Did more labs and an MRI. No answers, but also no joint damage so that's good. We talked options for a while and came down to me going on a 5mg maintenance dose of prednisone for 1-2 months and then coming off of it. Her hope is to put my disease back into remission, even if that gives me just 1-2 months of remission until the symptoms show back up and then I go back on the prednisone for 1-2 months. It's not a solution I was super happy about because I don't like being on prednisone, but so far I haven't had any nasty side effects or bad reactions at this low a dose.
It's working enough. It's not working as much as I'd like. The pain is reduced enough that I can walk on the correct parts of my feet, but the pain is not gone, and it's not even back down to my "normal" level of pain. But it is manageable. So that's how I'm living right now. I am managing. I've had some times when I can't walk on my feet, but it's usually early morning or in bad weather and it doesn't last, unlike before. And my Rheumy is having me take my insomnia meds daily now so I am sleeping through the pain. I see her at the end of the month to see how things are going. If this doesn't work, our next option is methotrexate which comes with a boatload of nasty side effects and regular blood work to monitor blood counts as they fall (which they will) and liver function. So if we can avoid MTX, that's for the best. I just continue to hope and pray that this temporary solution works to put me back into remission when I come off of it this month or the next.
It's been hard as there are more things I feel like I can't do anymore. More things this disease takes away. I haven't been updating this thing, because often, I just don't want to think about it. But M and my faith have really been getting me through. It's not something I feel a need to hide from the world, but it's not something I talk about much either--mainly the two groups of people I talk to are either atheist/agnostic and religion is for the unenlightened, and in the other faith is truely a personal foundation, but it's assumed and vocally a Christian faith. In the past I haven't felt comfortable talking about my faith openly because I can't predict the reactions, but right now that fear feels unimportant and small. Without my faith, I'm sure I'd be in a capital-D Depression. But I'm not. I know that my gods are right here with me and they hold me up. It is coming up on 10 years since I was dedicated to my patron god. It sounds like a long time, but it doesn't feel like it. I have evolved and grown and changed so much in 10 years, but he has been a constant; he has lived in and around me like breath, reminding me to let go and follow, that I will be taken care of, reminding me of my own strength. He fills my mind with wind when it feels hollowed out by pain. I just can't feel right about keeping this a secret for fear of what others will think. Hi, my name is K, and I'm a poly/pantheist who practices what I just recently found out is called Celtic Shamanism. Who knew.
But it's not just the gods getting me through-- M is amazing. I will never be able to thank her enough. She's my perfect companion. She's always there when I need her and she scolds me for not taking care of myself and reminds me to ask, and to accept, help. She's the reason I can say in the face of all this pain and restriction, I am happy.