Health Update Time

A while back I posted about my health challenges. (See here and here if you aren’t caught up).

I’ve been placed on Stelara for my ulcerative colitis (“UC”), which is an immunosuppressant that is aimed at UC and at psoriatic arthritis. It’s helping with the UC though is not putting me in remission. Regardless, I’ll take the progress. TMI, but I’m pooping like 3-4 times a day, down from 8 or more. So poo doesn’t feel like it’s controlling my very existence any more. Hooray for that!

The catch is that while Stelara is clearly helping me with my UC, it has not touched what had been diagnosed previously as Psoriatic Arthritis. I may in fact have Psoriatic Arthritis, or I may not. But it seems I also have either seronegative Rheumatoid Arthritis (“RA”) or lupus going on, doing damage to my joints and causing extreme fatigue problems.

So, my rheumatologist started me on methotrexate, which is a chemotherapeutic drug. I’m on a much lower dose than folks with cancer would take, but it’s still got some chemo side effects like nausea and hair loss.

Zofran (anti nausea med) is my best friend.

I take methotrexate one day a week, and folic acid the other six days, which helps flush the methotrexate out of my system. Then I do it all again the next week.

Is it working? It’s hard to tell. I developed a random ear infection that caused me to have to go off methotrexate and took three full weeks of intense antibiotics to get rid of. (I’m sure that helped my poor guts. 🙄) Now I’m back on it, but it’s only been a few weeks. It hasn’t touched the fatigue, and my ESR (erythrocyte sedimentation rate – and indicator of inflammation) is still elevated, but my hand pain is no longer so severe that it’s keeping me from sleeping. So I’m wicked hopeful that it’s going to help at least with the pain.

Mind you, I’m not taking care of myself the way I probably should. I’m trying to still live a life that’s got some joy and fun in it! I went to the P!NK concert in Syracuse with a good buddy of mine. That meant walking up and down the steep Syracuse University hill. It also meant climbing ginormous stairs at the Dome because all we could afford was nose bleed tickets. The concert was phenomenal. Best concert I’ve ever been to. The woman can sing, and she’s an amazing aerialist, and funny as hell. Just all around an amazing concert.

Only problem? I literally could not walk the next day without my right knee seizing and giving out. That’s the second time that’s happened – the first was on the steep hills of Old Lyon, France. So, I made an appointment with an orthopedic surgeon for next week for new x-rays and maybe an MRI to find out what, exactly, is wrong in my knee, and whether there’s anything that can be done for it. Maybe he’ll be able to tell what’s causing the issue – Psoriatic Arthritis has a signature look on an x-ray, as does osteoarthritis. If he recommends shots I’m here for them. If he recommends replacement I’m here for that. I want to be able to go for walks around my hilly village still, for pity’s sake! I’m not giving up on movement at age 48. Especially not with young kids!

I also have fibromyalgia. My tender points have been really bad lately. My rheumatologist went through the options for controlling fibromyalgia pain: Effexor or Cymbalta? Already on Effexor. Gabapentin? Already on it. So we don’t really have other good drugs in the arsenal for it, though new studies have demonstrated increased understanding of the disrupted pain sensing system that constitutes the driver of fibromyalgia pain, so maybe someday soon we’ll have some new meds available.

Fatigue continues to be the controlling factor in my life. I go to bed at 6 pm every night. If I don’t, I am a mess the next day. For my volunteer work for my church I sometimes have late meetings that mean a day of brain fog and exhaustion will follow. I don’t learn though – I signed up to ring handbells this fall and rehearsals start at 7, so I’m sometimes my own worst enemy. But oh, I love playing handbells!

I get up between 5 am and 6 am. So that means I’m getting 11-12 hours of sleep a night, assuming no meetings or bells. Then I MUST lie down during the day, and often nap. If I didn’t get to bed at 6 the night before I’ll sometimes wind up in bed more hours than I’m up.

Frankly, it sucks.

I’m grateful to be on disability so I can survive financially. But I’m also irritated with the government, which owes me $13,000 in back payments. When I call to inquire about it, they tell me “huh, it’s strange, I see you’re owed the back payment but it doesn’t look like anyone’s doing anything to get that paid.” GAH.

I worry so much about my future. If I can’t go back to work, how will I ever “retire” and survive old age? The caps on the amount I can put in retirement while on disability are way too low. Plus, I feel angry that I’m sleeping my life away. There’s so much I don’t get to do because I’m too tired. It took me an entire month to recover from my lovely week-long family trip to France. Will I decide it’s worth traveling again? I hope so as I love travel. But it’s getting harder to find the desire to struggle for so long after just one week of travel.

I’ve always wanted to go to India with my BFF.

I want to go to Morocco.

I want to go to Costa Rica with Kiddo when she’s 18 and can get a passport – that’s the place she says she wants me to take her for her first international trip.

I want to expose Sprout to more international travel too. She loved our trip to France. I want to take her to London next year, as my sister and niece now live there.

So many places, so little time. And money. And energy.

Anyway, I’m generally an optimist and thank heavens for that. I still am hoping the meds I’m on will start working better. I’m still hoping new meds will come out. I’m happy to do surgeries to replace bad joints if it will help. Whatever I need to do to improve my quality of life, I’m here for it.

Sprout continues to be sort of oblivious about the fact that her Mom has limitations. Thank heavens. She doesn’t complain that it’s weird that we go to bed at the same time (she too needs a lot of sleep, as is often the case for trauma kids. And she, too, lives with chronic pain because of her joint problems caused by her dwarfism). But someday she’ll notice that her Mom can’t keep up. All I can hope is that she’ll continue to be the kind, compassionate kid she is now, and give me lots of grace.