It’s infusion day. I am SO glad, this month, that it is infusion day.
I’ve probably been pushing too hard (let’s face it, that’s kind of a given).
Stress has been high.
But I think part of why my hands are SCREAMING right now is because I went to the dermatologist. Apparently a tendency to accumulate warts is a thing with RA. Who would have guessed. Shocking I know. But I’ve been acquiring several (they treated 8) and the ones I’ve been acquiring have started to become problematic. So five months ago I got the first available dermatologist appointment I could get. She froze my warts and gave me instructions on what to do as aftercare (soak hands 20 min in the evening… emery boards to file them down… salacitic acid…) . Blisters are a good thing! Nope. The freezing hurt like a… well, you know the rest of that saying… but man, after the pain and stinging of the freezing… the blisters really are hurting.
And… I’m pretty sure that contributed to the flair.
So, I’m sitting here, thanking my lucky stars it is good drugs day… slathering on the Tiger Balm (because it turns out that Voltaren Gel is bad for dogs and I can’t very well wash my hands after I put it on when my hands are what is screaming)… and considering if it was really worth it trying to get the stupid warts under control.
It was. I know it was.
But damn… there are times when I really believe that the cure is worse than the condition in a lot of cases.
I keep thinking things can’t possibly get worse. Eventually life has to start not sucking, right?
Counting down to Thanksgiving and hoping to maybe go to Denny’s… and Giant Eagle for some Turkey legs to smoke on the grill.
It’s really hard being in a dark place. It’s hard to think. It’s hard to function. It’s hard to BE. I knew grief was going to be hard. Believe me. I watch people (face to face and virtually) and I … Continue reading →
It’s the 4th of July 2020. I am so over politics. I am so over Covid 19 and its evolving cousins. I’m over the Murder Hornets and the Meth Gators and being scared all the time.
January is the traditional time of “reset”. And in January I decided that my word for 2020 was going to be JOY. And then February happened… then March happened… then April and May and June. I have been fighting so hard to just maintain any vague semblance of sanity and not falling into a pit of depression.
Don’t get me wrong. I’m on year three of my anti-depressants. And there are days when I really want to message my Dr to see if we can’t adjust the dose. It’s not like I have much to be depressed about. Bear on hospice, knowing that the flu probably put him there. Races being cancelled. Fairs and Disney. Movies at the theater being a thing of the past. The world as we know it changing to one where hate and derisiveness are rampant. Realizing just how polarized things really can get. It’s made this Mary Sunshine pretty much a Debbie Downer for a lot of days.
Then I found 99 Walks.
I’m not even sure how I found it on Facebook, to be perfectly honest. It might have been an ad on my feed. I don’t know. I know whatever it was, I saw the shiny thin bracelet that is your reward for making your walking goal every month and I was hooked on the bling. Ask anyone… I have a crap ton of medals hanging in the window of my office at home. Bling is an awesome motivator. And I needed some heavy duty motivation. Three good things every day for months on end wasn’t doing it. Something had to.
So I went and investigated. There is an app for that (go figure). There is a book. There is a central Facebook group. There are spawned off other Facebook groups. Everyone is so incredibly supportive and friendly. It is my respite from the world. It’s not a magic bullet. I still find myself in a pit with nothing to look at but mud walls and worms kind of frequently. But it is helping.
This month the theme is Joyful Wanderer (did I say that yesterday?). I’m taking this month very much to heart. I’m very mindfully walking. I’m stepping up my game. I’m very determined to get my Joyful Wanderer bracelet.
I’m struggling to get back to Choose Joy.
I’m manufacturing ways to try to trick my brain back into some semblance of who I am because I really really miss being me.
Does that make any sense?
So tonight I’m sitting here waiting on French Fries to be finished cooking, nursing a shoulder that has been flairing for about four days now (it usually doesn’t last this long and I’m really not enjoying it). I’m putting my left hand where I need it to be with my right hand so I don’t move the muscles so much in my left shoulder. I’ve been putting Boo Boo Salve on it pretty regularly (it’s awesome stuff… all natural… a friend of my mom’s makes it… https://www.rainbowskytrading.com/) and adding in the Napproxen at night.
Today we went to the zoo again. It’s coming up close to the Asian Lantern Festival and we wanted to see them in the daylight. That, and the Dinosaur experience is open so… yeah.
It was particularly scary to be out and about today. The state isn’t as bad as Florida or Arizona or California right now… but we are double what we were a month ago and it isn’t looking better any time soon. Our county is the second highest number of Covid cases in the state. The mayor of Cleveland made an executive order that everyone has to wear a mask when they are in a public place.
It was good to see, though, that people were actually wearing masks this week at the zoo.
I worked hard today at mindfully spending time with Bear and Squirrel. It was, altogether, a good day. Pictures to treasure. Memories made.
Should we have gone given everything? Probably not. But we were as careful as we could be. Handsitizer. Clorox wipes. Masks and 6 feet apart (even when it pissed people off that I deliberately would not push Bear’s wheelchair past them when it was too close. Bear says he will die sooner if he can never leave the house. I can’t take everything away.
Starting now I will be starting to use curbside pick up.
Am I scared?
Hell yes
But I can do this. I can’t say this is any kind of new normal… but it my current reality and I have to find myself again.
Today was one walk of 2.6 miles pushing the wheelchair and one walk of 1.2 miles. both were mindful and peaceful.
I’m sitting looking out over the snow in my yard. There is a woodpecker munching on my suet feeder. There are chickadees and titmouses (titmice?) grabbing some of the sunflower seeds from the clear plastic feeder that is stuck to my window. The squirrels are, apparently, huddled in their nests somewhere because they really haven’t been making much of an appearance this morning, yet. It’s really a pretty morning.
I’ve been fighting hard to get completely over the flu from December when… WHAM… Bronchitis from January derails any hope of my January infusion being on time, if happening at all. The antibiotics aren’t really helping an awful lot. My infusion is a week late now… my MTX has been put off for at least last week and this week and probably next week.
This morning, the stress of 70 hour weeks and forgetting to go pee, let alone eat and putting sleep off in the interest of “Git ‘er done” has all contributed, this morning, to my fingers and wrists screaming about whatever has been going on in my body.
Stress is really kicking my behind.
I try not to. Honestly I do. I try meditation. I try not bath. I try walking. I put bird feed into the big giant bird feeder out front, and I kind of melted down in the kitchen on the floor because I could not make my hands get the roof back on the bird feeder.
Stress is RA’s evil insidious little friend… and just when you think it’s safe to take a breath, something happens and your body rebels. Stopping the drugs that make your immune system dumbed down so your body can heal from the sick just pisses off the rest of the immune system and WHAM… it comes screaming back to remind you that it is SO there.
Prednisone… I’m turning to you again… not a huge dose, but one that I really really didn’t want to have to start taking.
Okay… so today we drive up to packet pick-up. I’m hoping for long socks and arm warmers; I’m REALLY hoping for arm warmers (they are really neat). They have a store, go figure.
Last night I finally tried on the pants I’m wearing to race. They fit perfectly. I’m going to hunt up my tights for under them because 40 isn’t warm and they aren’t probably heavy enough for me to be overly happy even racing. But they fit and they are cute. I get my dry fit stuff in my packet today, so I will see what other cute crap I can wear with them.
My fanny pack is almost packed. I have to toss in my iPod and my phone and my camera and I’m good. I have my glovies (electronic compatible ones, naturally) and hand warmers and my own candy canes. Not that I’m terrified of having to face the same lessons that I learned at Run For The Water last year, but… yeah. I pray I don’t have to worry about watching them empty the last two water stations all over the ground as I approach. I hope I get a cookie or two. I hope I get a candy cane… or two. I hope I’m not swept. Even DFL beats DNF. I really really want to finish.
I’m mortified to announce that I actually did start taking my prednisone. Yesterday I took 3 because for two days my left wrist (NOT my problem child) was KILLING me. Right around the Carpal Tunnel place it burned and ached and was horrible. My middle three fingers started to stiffen and ache and I knew it was going to get very not pretty very fast. I hate taking them. I refuse to take them if I have any other options. With the race tomorrow and so much I still have to get done to get ready for Christmas and my project kicking back into high gear… I probably didn’t think as long as I might have done otherwise. But… my Rheumy did give me a script back in the spring when my finger (same hand oddly enough) went totally bat shit crazy on me and gave me a refill. I kept it because I’m scared and it’s a good thing to have on hand. So… I am treating myself and will catch up with my rheumy on Wednesday.
So here I am, up and at em, ready to go to packet pickup. I’m HOPING to spend a few minutes along the lake today taking pictures and enjoying the cold. Eh a girl can dream, can’t she?
So, Sunday I finished the half marathon again. It wasn’t easy. It hurt. And my time was way off. And I realized since then that there is a good reason for that.
I am now just as bad as I was the day I was diagnosed (maybe a little worse).
All of my toes, my ankles and one knee are involved. The Rheumy said that she would buy into the fact that it was post half marathon swelly squishiness but I only ran on my feet, and my fingers (all joints) and wrists and elbows and shoulders all seem to be involved now, too… and I didn’t run on my hands.
She was going to keep me on what I was on before and add in Plaquinil… but that will really only help if you have a couple of joints that are being difficult, not if you have back-slid to way where you were before.
So, I’m going to be starting (if the insurance approves it) infusions of Orencia in the next couple weeks. IV drips for 30 minutes every 2 weeks for a month or so then once a month.
I knew my hands have been hurting a lot. I’ve been toughing it out a lot. Using a lot of Tiger Balm (like it is hand cream) and taking a few more Aleve than is probably prudent. I guess there is a good reason. There is a good chance that my hysterectomy changed my body chemistry enough that the Humir a just gave up and now I have to work through whatever it is that is pissing my body off.
The adventure continues.
I did finish though and I did get the bling. I’m scared I will never get to do Disney now… and I have to do Disney at least once.
So… here we are again fair reader… (yeah yeah… it is a weird morning… give me a break)… It has been a long week… and my body is reminding me that it has been a long week. This week… Adam … Continue reading →
This was posted in a group I’m on on facebook. I went hunting and found it here as well (and found out that it can be shared with attribution) What RA Is Like: A Letter For Family and Friends … Continue reading →
Okay… let me start out by saying I didn’t realize just what a raw nerve this was with me until I read the response to this…and I will warn you this is a rant… This all can be found here… … Continue reading →
Yesterday I worked 14 hours. By the time I got home I was exhausted and aching. My shoulder was sore. When I got up this morning my shoulder was hurting about a 12. I MAKE myself use my arm to try to get the synnovial fluid worked out of it. I’m trying to make myself feel less horrible. It isn’t working.
I hurt so bad today I actually called my rheumy to see what I can do… I took the anti-inflamitories that she gave me this morning (max dose) and it did NOTHING… So I called… and I talked to the nurse three times. The last time…
There is a steroid pack at the pharmacy… that I can pick up after it hurts like this for SEVENTY TWO hours. I had to put in 9 hours today… I have to haul my butt into work tomorrow because we have a very expensive contractor there and it is critical that I be there. My back up… yeah… he can come in 5 hours later than the rest of us yesterday… he can leave early today… because he is tired and his back (surgery 7 months ago) hurts so much that he has to be home. and I “got” to come home so I didn’t have to stay at work 14 hours again tonight… I have to WORK as long (oh… and I “got” to be volunteered to have my trouble ticket made a severity 1 and worked 24 x 7 because obviously I am the ONLY FREAKING ONE who can DO it and I so totally don’t need rest.
I am cranky tonight and feeling like not only am I taken for granted… I am ignored when I talk.
Between the pain that makes me near tears all day and the “you really don’t matter as much as… well… anyone else” attitude… I so want to just lay down and curl up with my blanket and sleep… which I can’t do.
The single bright spot in my today?
There is someone at work who rode to my defense today… made sure that boss man heard him say that what I do is appreciated… most particularly when I do it without bitching when I am not the one on call to jump when something is needed… but do it because I am there and I will get the job done. That made me smile through the pain fog.
A Figment Of Fitness 