Well hello. It’s been quite awhile since I’ve felt inspired to write. My little family has been going through a lot of changes and despite not working anymore I’ve actually been pretty busy. I’ve been  going to my Arthritis Wellness pool class twice a week and going to physical therapy as well. Who would have thought being sick and caring for a 2 year old full time would be so exhausting?

Let’s play catch up. Since my last post, I visited my neurologist for my regular every 3 month checkup and he recommended I start physical therapy. Well, I take that back. He recommended that I start getting injections in my back and neck since I have bulging discs in my neck and a spinal deformity in my mid back. I asked if there was anything else we could try first because I really don’t want to start injections just yet. He recommended physical therapy, which I’ve been attending 2x a week. I don’t really know how I feel about it. I think it’s helping a bit, but nothing life shattering or amazing. I feel a tad better when I leave but my pain usually returns full force by the next morning. I have 2 more weeks of PT before they assess if I need more. I’m hoping I can stop going because I don’t think it’s benefiting me enough to keep going.

The other issue we discussed at my neurologist was my hands going numb almost daily. He believes I have a trapped ulnar nerve.  He said that with my high levels of inflammation the nerve is probably getting compressed similar to carpal tunnel syndrome. He recommended that I try some Heelbow pads. I ordered these Medline Knit Protector Fits on Elbow  and have been wearing them to bed. I’m not seeing much of an improvement in my hands tingling and going numb, but I’m going to keep wearing them. He said to wear them for 3 months and if that doesn’t improve symptoms, next step is a nerve test. I go back to see him in June so I will update after that.

Rheumatoid Arthritis & Psoriasis

Next on the list of totally fun stuff I’m dealing with is side effects from my Actemra shots. I was getting Actemra via infusion but due to my insurance changing I moved to weekly shots because I couldn’t afford the infusion cost. I noticed after my second Actemra shot at home that I started getting bright red, scaly, itchy patches on my stomach. I called my rheumy and he said it’s most likely drug induced psoriasis.  At 36 years old I’ve never had psoriasis before and he said anti-malarial medications and biologics can trigger it. Rheumatoid Arthritis & Psoriasis are both autoimmune diseases.  I have 3 quarter sized spots. He said if I can tolerate the psoriasis that he doesn’t recommend stopping my Actemra or Plaquenil. I want to keep at this treatment, because I know options can be limited and I want to give it a real chance to work, but between the nausea for 2-3 days after, easy bruising (Current tally is 6 bruises) and now the psoriasis, it’s getting harder to give myself the shot every week. I have 3 more weeks of Actemra in the fridge, and if the side effects don’t lessen I will ask if we can discuss changing treatment.

That is just one of the things that is so difficult about this disease. I’ve had several people (not dealing with Rheumatoid Disease) say “It sounds like the medications aren’t worth the risk”.  And in passing, that seems sensible. So then I always start to think about it. Then I remember this:

Without proper treatment, rheumatoid arthritis can cause long-term damage to joints and irreparable damage to your whole body, along with persistent pain and disability, says David Pisetsky, MD, a rheumatologist and professor of medicine and immunology at Duke University School of Medicine in Durham, N.C. Joints may even become so deformed that they lose function.  – Everydayhealth.com

rheumatoid arthritis disease progression

It’s also been found that joint damage starts within the first 2 years of disease onset. Just because you can’t see the deformity starting in my joints, doesn’t mean it’s not painful and it’s not happening.

There’s also the other symptoms that people who are unaware don’t seem to think come with a Rheumatoid Disease.  Fatigue, nausea, low grade fever, nodules, swelling, redness, muscle pain, nerve pain, joint pain, brain fog, rashes, anemia, chronic infections, lung problems, heart problems, blood vessel problems…do I need to keep going? I could, but I think you get the point.

These are all the reasons I keep seeking treatment and trying. I hope that one day I can find something that eases most of my pain and slows my disease progression so I can do the things I need to do and the things I love to do without sacrificing days of pain afterwards.

Alright, I’m done for now. Send some good vibes to Stephanie. I’ve got my struggles but she’s been going through some major health issues and she could use lots of good vibes and prayers.

Until next time,

Katie