1) Psoriatic arthritis – the physical side
I’ve been on prednisone for three days now, and I am amazed at how good I feel. I’m not fully pain-free. My sausage finger is still a little stiff, but the swelling has gone down and I can grip things again! (It’s painful to grip things, but not impossible like it was before.) And my left shoulder hasn’t quite bounced back, although it gets a little less stiff and achy every day. But I can deal with that. Being in chronic pain for five months, I had forgotten what it’s like to do the simplest tasks without pain. Bending down to put on my shoes. Getting out of bed in the morning. Petting my cats. Drying myself off after a shower. Picking up a plate from a cabinet. Standing up. Walking up and down stairs. Putting on a pair of pants. Tying my shoes. All of this was unbearably difficult for so many months. I know there is a long journey ahead of me as I work with my rheumatologist on the right medication, but right now, I am just soaking in these moments where I feel good and like a woman in her late thirties again.
2) Psoriatic arthritis – the emotional side
I don’t think I’ve really come to terms with the emotional side of this diagnosis and what it means to have a chronic autoimmune condition. Last summer, when my index fingers were swollen and hard to use, I was terrified I had rheumatoid arthritis. I didn’t even talk to Lisa about this because I didn’t want to speak any truth to it. At this point, I’m guessing I didn’t have trigger finger but rather a symptom of psoriatic arthritis (and since the pain was cleared up with steroid shots, that’s even more proof). Fast forward to January and I am crossing all of my fingers and toes that I would be diagnosed with psoriatic arthritis. It’s not that I wanted an autoimmune condition; I wanted answers. I wanted to stop feeling so terrible all the time. Nothing about my pain felt normal, especially for someone who is 38 and able-bodied. And while I will likely have to deal with the emotional side of this diagnosis at some point, right now, I am just relieved to have a reason behind my pain. It’s not all in my head. It’s a real condition, and there is treatment for it.
3) Instagram break
On Sunday night, after doomscrolling through my feed right before bed, I decided it was time to delete Instagram from my phone. I needed a break from the news and the opinions of what’s happening and the incredibly vile responses from the leaders of our country. Things feel so bleak and so hopeless right now. A baby almost died because of ICE! How does anyone justify that? How does the pro-life party justify anything that’s happening right now? It makes me sick to my stomach on a daily basis. I miss my cute cat videos and silly memes, but it’s good to be off Instagram right now. I’m going to take February off Instagram and then reevaluate if I want to return.
4) A moment of delight
Who wants a dose of delight? Last night, my mom and I met at a restaurant near her house for dinner and afterwards, we hopped in my car to drive over to Bath & Body Works (which is in the same shopping center) to poke around. Then, we walked over to the grocery store for a few items before hopping back into my car. And then I pulled right out of the shopping center and was halfway to her house when I started laughing hysterically. “Oh my god, I have to drive you back to your car!” Folks, I was ready to take my mom straight home, forgetting that she had driven to dinner herself. After the grocery store, I was supposed to drop her off at her car, not at her house. She started laughing, too, and said, “I was thinking, ‘Oh, I’m going to have to go in [to her house] through the front door but I don’t remember leaving through the front door!'” (She has a garage, so she would have left through the garage tonight!) Sigh. At least it was literally a 1-minute difference in time since she lives so close to this shopping center. And it made us laugh so much!
5) Weekend plans
You guys, it’s going to get cold this weekend! There’s even a slim chance that we could get snow flurries! That would be wild. The high on Sunday is 46 degrees, eeks.
Other than preparing for our Florida snow day, I don’t have too much going on this weekend. Today, I’m planning on tackling some errands and getting some chores done. (How exciting.) Tomorrow, I have a writing date with Mikaela and then a reading date with another friend. And Sunday, I will stay cozy indoors! I realize that a high of 46 for you heartier winter folk means going outside and enjoying the “warmth,” but I am not hearty when it comes to cold temperatures like these!
Tell me a moment of delight from your week!
My moment of delight was this morning. Indy came in to wake us up (we were up), jumped into bed, and then we all giggled and tickled and snuggled and it was so sweet and also bittersweet because how much longer will he want to do this?
And then… HE WENT TO SCHOOL which was also delightful because we had two snow days this week. So I’ve seen a lot of my kids.
I’m sure the emotional AND physical side of this diagnosis will ebb and flow, but I’m relieved you have a diagnosis and are getting treatment and relief from pain after such a prolonged period of struggling <3
Hooray for school days! Coming off winter break, not knowing if your kids will have school or not has to be really destabilizing. Am I going to have time to myself today or not?!?! Here’s to fewer snow days going forward!
Literally if it were 46 degrees here I would run outside without a coat. It is currently NEGATIVE FIVE so I am stuck on the elliptical boooooooo.
I also have psoriasis, and every time my hips and fingers hurt, I wonder if I also have psoriatic arthritis. My great grandma had it– but even 40 years ago she was able to manage it pretty well with meds, and the meds must be so much better now– is what I keep telling myself…
I am glad you have the beginnings of a plan for treatment and are finally feeling some relief. What did your doc say about exercise? Can you do, like, water aerobics and swimming or something?
I hope you do not get PA! It’s not super common for people with psoriasis – I just got unlucky. Sigh.
I totally forgot to ask my rheum about exercise at my appointment, ugh. I think I will be able to do normal exercise (HIIT/spin like I was doing) once things are better managed. I’m going to make my triumphant return to the gym this week and just do some cardio machines and see how I feel after that.
Being diagnosed with a chronic illness is something that will take time to process. But it is a relief to have an answer for your pain and a path forward. I literally thought I might have had bone cancer when I was dx’d back in 2013 because I was in so much pain throughout my entire body! So when you go into a dr appt fearing you have cancer, finding out I had RA was not so bad. But then it took some time to emotionally accept that I had a disease that I’d have to manage for the rest of my life. BUT the outlook is good for us since there are amazing meds. But you definitely should take time to wallow in this a bit if that is what you are feeling (I definitely wallowed while also feeling thrilled that the pred solved my intense pain).
My moment of delight this week was being able to get on an earlier flight home from Vegas yesterday which meant I got home at 6:15 instead of 8:30. It was stressful getting on the actual flight, like I didn’t even have time to use the restroom at the airport and practically ran to the gate, but it was worth it!
I’m glad I didn’t go down the “is this cancer?” path myself. I’ve done that before (especially when I had a very troublesome cyst in my underarm and was convinced I was going to be diagnosed with breast cancer), and it can be very overwhelming! And now I have a diagnosis, yay!
Hooray for getting home two hours earlier from Vegas! I’m sure Phil was happy about that. 🙂
I never thought that I would be the kind of person to take a social media break, but once I stopped working it happened very naturally. It’s not that I don’t like Insta, it’s just that for every post that I was interested in I was having to see 3-4 posts that they were imposing on my feed, which was too much stuff that I just don’t care about. I still use FB for a few groups and events, but I avoid reading my feed as much as possible, because it just doesn’t make me feel good. I’ve mostly stopped using LinkedIn because….obvious reasons;-)
Yes to pain free days!!! The diagnosis really seems to explain a lot of the symptoms that you were having. I know that it is a journey, but right now it’s on a good road and I hope that it stays there.
My weekend plans are to hibernate. At least we have bright sunshine right now, which helps with the cold.
There is SO MUCH NOISE on Instagram these days, especially all of the ads they serve you and extra posts from people you don’t follow. And once you doomscroll once, that’s all IG wants to show you going forward. I haven’t missed IG at all!
Okay, us northerners might tease you about mid-40s because right now that’s 30 degrees warmer than we are, but in September, the mid-40s would be CRAZY COLD for us, so don’t let our teasing get to you. If your temps are dripping from the 70s/80s to the 40s, that’s a huge swing and it will feel cold! Bundle up!
Thank you! I can always count on you to give me a little grace when it comes to our cold weather whinings. 🙂
I’m so glad that the prednisone is helping so much, it’s such a relief to be able to do all of these little things, right? Turning a doorknob, brushing your hair, walking across a room, putting on clothes. Has it given you an energy burst? When I first started taking it I had SO MUCH ENERGY. My kitchen has never been cleaner.
The story of you and your mom was cute, thanks for including it. I had a sweet moment with one of the cats at the pet store today where I volunteer. He is SO AFFECTIONATE and just climbed all over me. I did not invite this behavior, he is just a total love bug. There was a woman there doing puppy training with her puppy, and she said her coworker might be looking for just such a cat. I’m crossing my fingers that she adopts him.
J – I didn’t realize about the energy burst until you said something BUT YES. I was so goddamn PRODUCTIVE last weekend. I am NEVER that productive, but I didn’t even feel like taking a nap on Saturday (unheard of for me) and instead, got through a whole list of to-dos, which felt really good.
There is nothing like a super affectionate kitty! I hope he got adopted quick. <3
I will also be inside on Sunday, bundled up with my cats! This is CRAZY cold, for Florida. I’m kind of looking forward to it. I’m going to run later this afternoon (writing this on Saturday) and then not go anywhere again all weekend! Now if only there were football, it would be perfect (sigh…)
Yes- no one wants a chronic autoimmune condition, but no one wants to be in chronic pain either. I can totally understand how you’re excited and relieved to have a diagnosis and be able to move forward with a treatment plan.
Good luck with the Instagram break! My son is doing the same thing right now, and I haven’t been on Instagram in months. It’s not good for our mental health!
This was the wildest cold snap I can remember! At one point, the “feels like” was in the TEENS. I have never seen that in Florida!
IG can be so detrimental to our mental health, I agree. It’s always good to know when to step away.
A “dose of delight” is just the best phrase I’ve heard in a while and just so needed in these wild times. You’ve so been on my mind with your diagnosis and I’m so happy the prednisone is helping and you’re able to move and see progress. It’s been such a long road!
Thank you so much, friend. It has been amazing to feel good again after so many months of stiff, painful joints. I feel like a new woman!
My word of the year is “delight” but I’ve been struggling to find any this week. And I also have a cold where I’m horizontal most of this weekend. Bit still… Tony brings me some soup and buttered bread while I sneeze and blow my nose 100 times in one hour. How my street looks with all the snow. The kids creating a game in the next room. My new book, Heartwood by Amity Gaige.
That thing about mom and driving home is hilarious.
I’m glad you found some little moments of delight during a hard week! That’s when it’s most important to find those sweet moments. <3
Thank you for sharing how PA affects you and all your daily functions. That’s really eye-opening, and again, makes me so glad you are getting some relief.
Not to be all ME TOO, but I have to share, when I got my diagnosis (about a similar age to you) to my dumb blood thing it took me a while to wrap my head around around it too. It will be an emotional ride but you have the tools to go through this journey while giving yourself grace.
Good call on going off Insta! I am guessing you won’t want to come back. 😉
I wish it wasn’t so cold there right now! My sister and her family are there for a trip and were hoping for warmer temps. LOL!
Nobody wants a diagnosis (obviously), but having a diagnosis and a treatment plan is WAY BETTER than poking around in the dark!
That is such a hilarious story. It can easily happen when you are having fun and feel so comfortable with each other.
I am sorry for your diagnosis and I am getting the physical and emotional side of it. My experience is that the emotional side will come up in waves. There are days when it really really sucks and you wonder what you did that you were chosen to get that decease and then there are days when you feel so strong because you can tackle life, have fun despite the disease.
A diagnosis makes a huge difference. I hope you continue to feel better and that it becomes your “default setting” again as you and your provider(s) work out a treatment plan. Maybe it won’t happen right away, but you’ll get there.
The story about you and your mom is hilarious. Thank goodness you weren’t hours away from home!