Prior to my infusion appointment two weeks ago, I met with Dr. Rheumy. I normally meet with my Infusion Rheumy prior to my infusion, but since my pain has drastically increased, and the fact its been about a year since I last saw Dr. Rheumy, it was time.
After waiting a ridiculous amount of time, albeit in a comfy chair, I got to finally explain my discomfort and had someone listen.
And then, that’s when it hit me. I’ve been stoic for far too long. I’m really good at being stoic. So much so that I can portray as a “two” to most. But in reality, thanks to my hip pain, I’ve been at an 8 to 8.5. For a FEW MONTHS. AN 8!! That’s this face by the way:
Practically crying…on the inside.Remember, Stoic Face: 2. Pain Reality: 8. That’s talent right there. I wonder if I could win America’s Got Talent for that one.
The next famous question – how long has this been going on? Well, my injection for the hip was last November. I had a follow-up appointment for the bursitis in February, so early April and its been getting worse.
Woah. April. Remember April??? Arthritis Walk Committee meetings, birthday, anniversary, Arthritis Walk, Memorial Day, Garden adventures, family in town? To say it’s been crazy would be an understatement.
Wow! I couldn’t believe I was actually admitting this OUT LOUD!! One reason why enough IS enough is because the pain in my back is out of control. So much so that my right hip is now starting to hurt. What a catch 22 I’ve put myself in.
Ugh, I feel so old.
Dr. Rheumy prescribed a few things to help control the pain. First is Tramadol. I’m pretty sensitive whenever I add new drugs to my repertoire and wanted some personal feedback, so I posted a question on a forum and surprisingly got some pretty good suggestions. For example: “Take it after you’ve had a meal. Drink a lot of water. Don’t take it before bed – it will keep you up.”
Right now, its working for me. The only downside is that my alcoholic consumption, albeit practically nonexistent, had to completely disappear. I’m not allowed to take it with alcohol. After all, it says it right on the label! So, if I want to go out to Happy Hour with some friends, I have to skip the afternoon dose. I did this last Friday, and although the drink was really nice, I don’t think I’ll partake much longer in this idea. Especially after the amount I’m feeling today and the fact that the Tramadol is barely taking the edge off.
Ugh. SO OLD!!
Dr. Rheumy also prescribed an MRI in which I participated in last Friday. I couldn’t help lying in the space shuttle thinking, hoping, and praying that they truly find something this time. I hate that I wish, hope, and prayed for that, but sometimes, you just want someone to believe you.
Apparently a full body of x-rays are normal in arthritis world. Dr. Rheumy wants to see how I’m doing year-to-year. A good thing, really, but hello radiation! ;) So, those are ordered and will take place in a few weeks.
The last thing – Physical Therapy. I’ve avoided PT since last November since Dr. Ortho suggested I do it. However, he told me not to really worry about it since I was so active and doing Zumba anyway. Well, Dr. Rheumy didn’t think Zumba was a good idea. *GASP*
ZUMBA NOT A GOOD IDEA??!?! I fought with him hard on that one. I’ll do the physical therapy and I’ll even travel to see your favorite physical therapist if I can keep Zumba in my schedule. After pleading explaining to him that I felt better after Zumba, he finally agreed it was okay.
So, how is it going with Physical Therapy? Well, I’ve had two PT appointments so far. The first, Mr. P attended with me and I was glad he did. He noticed how stoic I was being. HA HA! He knows me too well. I went into greater detail about my pain level and boy was it an eye opener. The doors were open and I took advantage of it. Explaining every twinge, every numbness, every tingle, and every cramp I’ve experienced. And yet, what baffled me was the fact that none of this phased my PT. She saw it on my face. ON MY FACE! On my stoic-oh-don’t-worry-about-it-I’m-really-a-“two”-face.
She suggested that water therapy might be the best option which we’re starting the second week of PT. She also approved and encouraged me to continue with Zumba twice a week, so much so that we rearranged my PT appointments around it. YAY!! But the best moment is when she said “don’t worry, we can fix that. We’ll also strength your back too, to help ease the pain for your AS.”
I think I cried a little to myself in that moment. My physical therapist knows and actually understands what ankylosing spondylitis is and the fact that we can actually fix this. It’s not something I have to live with.
The second, and latest appointment, was this morning. If you have AS, or any arthritis for that matter, and struggle in the morning, I really don’t recommend physical therapy in the morning. Well, sort of.
I really didn’t realize what kind of routine I’ve developed for myself in the morning because of my arthritis until this morning. My typical routine includes purposefully setting the alarm clock 45 minutes ahead so I have enough time to wiggle in bed. I also purposefully give myself double the amount of time in the morning to get ready because it truly does take that long for me to get ready. It’s the fact of life and its been “my normal” for 12 years.
However, this morning, when I got up, I was feeling it. Ugh was I feeling it! That sore, oh-my-god, someone-please-put-me-in-a-wheelchair-kind-of-creaky. When I made it to PT, it was nice they could tell I was sore. Sore, achy, and creaky. She took it slow and easy with me, and for that I’m grateful.
I appreciate it when people, especially doctors, are on my team. Those that are the true advocates who say “let’s try all options before we even begin considering surgery”. I like that. Because truly, there isn’t anything worse than that feeling. The feeling that every doctor thinks your crazy and thinking you’re making this pain up. I like doctors who are advocates and I’m glad I’ve got an entire support system behind me.
So with that said, I think I’m done. This has been a really long post, but I thought I’d share all of the details. After all, I’ve been silent for far too long.