Thrills, chills, excitement!
Ok, not really. At least not in the roller coaster-scary movie-sky diving-haunted house kind of way. As usual however, life has taught me incredible lessons through living and dealing with my conditions, and I’d like to share them with you.
Things have been a tad on the stressful side for me since my rheumy’s departure from the picture. Finding a new rheumy and juggling expiring prescriptions is not a fun day at the park – and if you compound that by having no insurance, you enter a whole new world of freaking out. Of course all the added stress does nothing for my RA; whether it’s coincidence or related to my worry, I’ve had 3 episodes in the last 2 months where my left hip ached so bad I could barely walk for a few days each time. I had this great, creepy, shuffling, Igor thing going on, that kind of made me laugh in between the wincing.
Despite that, I have an incredible amount of hope now.
Sometimes you don’t know how good you had it until it’s gone. Isn’t that what they say? As true as that is, it’s also true that sometimes, you don’t know how good it could be until you try something else. From the moment I set foot into the hospital where my new rheumy practices, I knew things were going to be very different. My new doctor came in – accompanied by a student, as the hospital is adjoined to a medical college – introduced herself and her sidekick, and sat down to begin going over my medical history and what I’d been through since my diagnosis. She was incredibly thorough, spending close to an hour with me, and not rushed in the slightest. We went over all the medications I’ve been on, past and present, for both RA and fibromyalgia – and how each of them affected me. After the Q&A session, I got to put on one of those hot little hospital gowns while she examined my joints, movement ranges, and basic ability to function.
At the end of the examination, she said several things which surprised me. The first was when she looked me in the eye and said, “Stop taking the methotrexate. It’s making you sick.”
This was one of the best things I’d ever heard. For over a year now, every Wednesday I have felt groggy and drug out. On really bad days I would have a splitting headache and feel nauseous to boot. I had been told that those were unfortunate side effects of the drug, and that coupling it with Humira was a common way to control RA symptoms – so the good outweighed the bad. Since I’m not a rheumatologist, I didn’t argue the point. My new doctor however did not agree. She even went as far as to put it on the list of medicines to which I had an allergic reaction. She also stated she wanted me off the steroids. This was music to my ears – I’d been pushing to get off of them for some time; my previous rheumy had tried to pull me off them once, and when that didn’t go so well he was reluctant to try again. She said we would look at all of my medications eventually, but we had to work with a little bit at a time. She then directed me across the hall for blood work.
Before I even crossed the door, a voice from inside said, “Hi Karen, come on in and have a seat.” I was immediately seated and had my blood drawn – 8 vials. After she bandaged me up, I got up from the seat and crossed the doorway into the hall and a nurse looked at me and said, “Hi, Karen? I have some information here for you.” She then began to go over my calcium and vitamin D intake – a concern the doctor had expressed because I have been on steroids for so long. I proceeded to have a total of 16 x-rays done, checking my hands, feet, and knees for any erosion damage – where I was treated as promptly and kindly as all the other stages of the visit. It was hands down the most comprehensive examination I had ever had in connection to my RA, and culminated in changes that I have wanted to make but didn’t feel I had the support of my previous rheumy to do so.
Don’t get me wrong. I loved my last doctor. But a visit there was completely different from here. He was often rushed, and while he was very kind, he never seemed to have more than about 3-5 minutes to discuss anything with me. He was reluctant to change some of my meds; I understood this to a certain extent, since we had been working for years to get my symptoms moderately under control – but several of my meds had side effects that I was pretty miserable with. The methrotrexate made me feel like crap on a stick for 12-24 hours every week. The steroids and the Lyrica have caused me to gain a lot of weight. It was a slow creep with the Prednisone, and adding the Lyrica was like strapping a rocket booster on it. Getting blood work done previously meant traveling to another floor of the hospital, taking a number, and waiting 30-45 minutes. It was like different worlds.
I like the new one so much better – and I never thought anything was horribly wrong about the old one. It was all I had ever known when it came to treatment of my collection of chronic illnesses, and I had always made the best of it.
Perception is everything.
As a foot note to the incredible kindness and care I received at the new facility I’m going to – on the way out, even the parking attendant was awesome. I was supposed to have parking validated if I was a patient to avoid paying the fees; he asked where I had been, and when I told him, he let me through with no charge and reminded me to get it validated next time.
I don’t know what they’re putting in the water up there, but everyone should be drinking it.
Within 24 hours the results of my blood work and x-rays were posted to a site I could use to track my tests and appointments and contact the office if I have questions. (The response time on this site when contacting them was 16 minutes – compared to the 9 days the site my previous hospital utilized for patients). Most everything came back looking good – a few blood tests were out of the range of normal, which I’ll ask about at my follow up, and my knees did show tiny bone spurs of some sort. No erosion damage from the RA in my hands or feet though, and everything else looked good.
So on to more adventures. I’m excited about the med changes; and a bit scared. I’m weaning down on the Prednisone now, and am going on my second week with no methotrexate. That leaves me on Humira, Lyrica, still some Prednisone, and one additional drug with a couple of supplements to address other conditions I have. I’ve noticed a small increase in joint pain so far, but nothing severe enough that would make me want to turn back yet.
Crossing my fingers for better days. I hope good fortune has touched every one of you as well!
Love & Lemonade,