Month: August 2021

BD (before I was diagnosed with RA), I went to see a few different orthopedic surgeons. After tests, manipulation on the table (hey that really hurts!) and x-rays, they decided I needed a new hip. I had been limping for years. So this wasn’t surprising. The fact that I was 45 and needed a full hip replacement was surprising. I chalked it up to “Well, at 40 your whole body just starts falling apart.” I mean people say that. I’d never been 40 before, but I’d never had pain traveling through my body before either. So, it made sense to me. I figured one major surgery and I’ll be able to walk again after rehab. So short term pain for long term gain. I can do that.

We scheduled the surgery when my kids could be with their father. The surgery went well. The first few weeks of rehab went outstandingly well. Then my RA, still unknown to me or my surgeon, reared its ugly head. My body hurt all over. My joints were in full protest. I couldn’t straighten my knees or my elbows fully. The pain from the surgery was the least of my problems. The therapist started doing manipulations to for the joints to open. I would sit in my car and cry in pain for at least half an hour after each session.

I went back to the surgeon and told him what was happening. He took more x-rays. He shook his head and met my eyes. “You need your other hip and both knees replaced. You’re much too young to have this kind of damage. I see 80-year-olds who need one joint replaced. Something is going very wrong. I’m sending you to a specialist who can help us figure out what it is.”

This is very scary to hear. Then my search for the right rheumatologist was so frustrating. In addition to being a single Mom, recovering from major surgery, working and being a PhD student, I was trying to manage a debilitating disease. I wonder sometimes how I made it through all of this. Friends and faith I guess…. and I’m so grateful for every single one of those friends.

Once I found the right rheumatologist (Dr. Best!), got on the right medications, finished all my surgeries and rehabs, I am happy to say, I found a lot of ways to survive RA. You will, too. Dr. Best Rheumatologist helped me a lot. Not only by going through treatment after treatment until we found one that worked well, but by laughing with me, insisting that I slow down and care for myself more, taking me seriously, and giving me an antidepressant when all the changes were just more than I felt like I could handle. He and his wonderful nurse were there whenever I needed them. That’s the kind of team to be a part of!

the FIRST time I heard the words Rheumatoid Arthritis from a doctor

So he was a new doctor to me. My friend and neighbor recommended him highly. He seemed nice, but a bit casual. He chatted with me about my history. At this point I’d been limping for years. I was at the point where my daily functioning was being affected by the pain. It was so I bad I had trouble sleeping. It would wake me up (Hey, pain, it’s 3:30 am and I have to get the kids up at 6. Could you go away now?). It was making work hard. The PT was treating me at least twice a day just so I could get through the day. So the doctor, this rheumatologist, who seems nice enough says “Can I tell you a dirty joke?” (UH what?!) I should have left then. I should have yelled at him. I should have turned him in to the AMA. But I just said “I guess so.” I was completely shocked and didn’t know what to say. (Brain, is that really all you could come up with? “I guess so”? Gurrrrllllllll, run!) So he proceeded to tell me a slightly dirty joke. As I sat there wondering just what kind of doctor this guy was, he said “You have rheumatoid arthritis.” (Wait, no blood test, no x-rays, no exam….) I asked how he could know that. I was told that he had many years of experience and he’d seen it so much that he just knew. He suggested I start taking a chemo drug called methotrexate. This is a very low dose of chemo. I left and I never went back.

the SECOND time I heard the words Rheumatoid Arthritis from a doctor

Several years later, my new GP sent me to a specialist. This rheumatologist also came highly recommended. A doctor I trusted, who knew me, sent me to him. He was generally known to be a good doctor and a really great guy. So, I went in and talked to him. He asked how long I’d had symptoms. I said well, about 6 years now. And then Dr. Great Guy turned into Dr. Nasty. He berated me for waiting so long. He told me I was overweight (like I didn’t already know that). He said I see you’re single, divorced, right? Right. He replied by telling me I clearly made horrible life decisions. He said I was much too smart to act so stupid. I started crying, which frustrated Dr. Nasty to no end. He told me to “turn off the water works.” He said this was really all my fault. Then he said “I don’t want you as a patient. Find someone else.” I left. I went and sat in the hallway and called my sister. I continued crying. I looked up and here came Dr. Nasty down the hallway. He saw me and smirked, shaking his head. I limped to my car in complete disbelief.

Finding the RIGHT doctor (third time’s a charm)

I asked around for another recommendation. This time the doctor I went to see was professional, kind, and up to date on all the research. I told him about Dr. Nasty. He was shocked. He said “You can’t give yourself RA. So clearly HE makes bad life choices.” He said Dr. Nasty was a good doctor and usually a great guy. (SIGH) He said he’d like to see me as a patient, and we could work as a team to find the right drugs. That was the beginning of a great doctor-patient relationship. He’s still my favorite doctor I’ve ever seen. If I hadn’t moved away, I’d still be going to him. No off-color comments or jokes. No berating me. Only compassion, caring and a professional approach. He was thoughtful when things didn’t go right, slow and steady analysis. Just my kind of doc!

So don’t get frustrated if you’re looking for a doctor and the one you find isn’t a good fit. Just keep looking. Find one you can work with as a team. You may have to try a few. I hope they are nothing like the first two I saw, and everything like the one I found.