Wednesday, June 19, 2013

In Which Semi Colon Impresses the Rheumy

Today, I had a follow up with JP Dr, the Rheumatologist. I really like her. In fact, I really like ALL of my doctors right now, and I am so thankful to be able to say that! I am thankful for each one of them, and they all are very helpful, listen (most of them, most of the time), are understanding and don't minimize my concerns.

It was an awesome appointment because my joints are doing quite well. They were so very swollen and inflamed back when I first started seeing JP Dr about a year ago, and they remained that way for months, despite high-dose steroids and methotrexte injections twice a week. Thankfully, at this appointment, just one knee was swollen! I am still having a fair amount of morning stiffness and can't seem to get going on rainy days, but she expressed that that is probably a permanent thing at this point.

This was my first appointment with her since I started seeing Dr. House and got my new diagnosis of Ehlers Danlos Syndrome. Dr. House emphasized that the Rheumatologist is the main team leader in combating the musculoskeletal effects of EDS and said that she would be very interested to hear of this new diagnosis.

My bendy elbows
He wasn't joking. She asked me to show her my hypermobility, and when I did my elbow thing, she literally jumped out of her chair and ran out of the room, returning momentarily with a camera. "Mind if I take some pictures?" She photographed me demonstrating the hypermobility in my thumbs, fingers, elbows, knees, and back, as well as the stretchiness of my "velvety" (her words, not mine... this is a rather pleasant aspect of EDS - velvety soft baby skin!) skin which is so transparent that you can clearly see the venous network beneath the surface. She took several pictures of my flexible elbows, as they are especially impressive, apparently. ;) My favorite was when she took a sticky note, scribbled "EDS!" on it, stuck in on my elbow, then had me "straighten" my arm for a picture.

Apparently I am the worst case she has ever seen, and my joints are so dramatic that she wanted pictures to be able to show the medical students who rotate through Rheumatology! My joints are more "dramatic" than the textbook pictures... I'm gonna be famous, folks! I forgot to ask if she wanted a picture of me demonstrating my tongue flexibility (I can pick my nose with my tongue... it's impressive). Also forgot to ask if I get a royalty every time she uses my picture. ;)

So since I now have several doses of Cimzia in my system and I have had very little troubles overall from an arthritis standpoint (no major flares, little swelling, great mobility, no hospitalizations with SIRS reactions in months and months), she asked me if I wanted to do a trial of dropping methotrexate!!! I have been giving myself weekly injections of this chemotherapy drug for months, and I HATE it. I honestly DON'T mind the whole giving myself a shot part... it's the after-effects. Some weeks, I barely feel anything, but most weeks, some or all of the next 24-48 hours are spent in bed feeling like I just injected myself with poison (which... is the truth. It's a chemo drug, after all). Migraines, severe nausea, and just feeling very weird overall (they call it "the methotrexate blahs." It sort of feels like you're out of your body or under water - like a pre-coffee haze that doesn't let up). Anyways, at the suggestion of dropping the meth shots, my face lit up like a 100 watt bulb, and JP Dr laughed and said, "Guess I didn't have to talk you into that, did I?" I will just watch to see if my stiffness increases, or swelling or fevers return. If so, then we will have to discuss going back on it, but she said we might be able to experiment to see if my joints can remain under control with a lower dose.

Autoimmune Inflammatory Arthritis aside, she explained what is happening in my joints and muscles because of EDS and why it causes so much pain and damage. The defect in my collagen causes my muscles, ligaments, and tendons to be too stretchy to hold my joints together properly. They also are much more fragile than normal, and also fail to heal normally. The stretchiness results in my bones constantly rubbing on each other in ways that they shouldn't, so even normal daily activities cause "microtears" to occur in my extra-fragile muscles and ligaments from the trauma of being over-stretched and pulled against bones. Then, unfortunately, these micro-tears take much longer than normal to heal. This results in a lot of pain, and the bones will start to erode much more quickly than they should, and to form bone spurs, which in turn cause more microtears in muscles, and the cycle continues. She told me that she expects me to develop osteoarthritis in the next few years, if I haven't already. This is the "normal" arthritis that people get with aging, but I will get it much, much sooner due to the EDS. So... if you're keeping score... on top of my Autoimmune Inflammatory Arthritis and EDS, I will develop/possibly already have yet ANOTHER type of arthritis! I hit the jackpot, it seems...

She wants me to do several new therapies... I need to see an Occupational Therapist for my hands, which give me a lot of trouble. She said that both the damage from arthritis and the EDS cause instability and pain and that's why I struggle with fine motor control and gripping. She wants me to go to OT to learn "joint protection techniques" to prevent injuries to preserve the integrity of my joints, muscles, tendons and ligaments as much as possible for as long as possible. I've mentioned before that a lot of people with severe EDS wind up in wheelchairs due to POTS and their joints becoming so unstable/debilitated that they can no longer walk. I am also going to start massage therapy (yesssssss!!), do a month-long course of Aqua Therapy, and get evaluated by Physical Therapy. The goal of all of this is apparently to exhaust me and fill my calendar with even more medical appointments. No, really... I hope that these people are able to help me and I understand that it is critically important for me to learn to take care of my body in light of this new diagnosis... especially when because I have so many other complicating factors going on with my health. I am very interested in NOT being in a wheelchair for as long as possible!

Hannah ;)

No comments:

Post a Comment