Over the past few months, my Rheumatoid Arthritis has been worsening significantly.
We've had major life stress, that has kept me in a constant state of flare, which means that, in addition to majorly impacting my daily life, joint damage is always occuring.
For those unfamiliar with the disease, RA, left unchecked, is a beast:
It has to be managed aggressively to prevent bad outcomes.
The rheumatologist I've been seeing for the past two years, now and forever to be known as Doctor Wrong, is near retirement and very conservative. He has attempted to manage my disease with Plaquenil and methotrexate (both older drugs) primarily, as well as a handful of other meds for pain and inflammation. Oh, and prednisone. Always with the prednisone.
However, each I see him, he is reluctant to start any of the newer biologics, citing my labs or my insurance or the weather or whatever else has come to mind at that particular visit.
At my visit this past Tuesday, though, we were supposed to start one.
So, even though I had an appointment for a second opinion in June, I went back to him, armed with a list of all that has been happening to me recently, all of my recent ER visits, all of the shifts I've had to cover at work due to my illness, and all of the high dose prednisone tapers I've had to take just to keep walking.
And, of course, the flare was still with me as well.
He came in and asked me what has been going on.
And I brought him up to date:
- My lower spine never stops hurting on at least a 5/10 on the pain scale.
- I've fallen twice in the past month, when my ankles just give way with no warning.
- My knees have gotten so painful and inflamed that sometimes they won't even bend.
- My hands throb, get stiff, won't open things, drop things, and are much larger than they used to be. Oh, and I have the RA nodules too.
- I had a flare in my ribs. That was not fun.
- My hips join in the party some days too.
- The fatigue that comes with this is debilitating at times (I slept until 8 PM tonight involuntarily).
And the symptoms have been persistently worsening.
I was in tears by the time I finished telling him everything, despite trying to keep myself together, because I am so frustrated. It is past time to be aggressively managing this, and, when we aren't doing so, damage is occurring.
After I finished talking, he rolled over in his chair to look at my knees and I jokingly said, "We're going to have to replace these guys if this keeps up." I was JOKING.
He looked at them, moved them around, and said, in all seriousness, "We're not quite there yet."
And then casually wheeled back to his spot.
I could have hit the floor.
I immediately said, "So, we are starting the injection today, right?"
And he said no, we need more labs and to check insurance. AGAIN.
And then we would start it.
So, in his mind, all the symptoms I've had plus knees that are bad enough to even think in the direction of a replacement at 37 still don't constitute an emergency that requires immediate action to stop this process before I get any worse.
He sent in my refills on my regular meds and I got the hell out of there because I was about to lose it.
In fact, when I got to my car, I did lose it.
With my new rheumatologist appointment not until June, I was freaking out, trying to decide what to do to get some help.
When I got back to Hueytown, I ran into our PCP's office and explained to the referral clerk what had just happened and asked her if there was anything she could do to help me.
While I stood there, snotty and looking like a crazy person I'm sure, she called around and worked some serious magic.
She got me in at UAB on May 10th, as I waiting, which is nothing short of a miracle. Rheumatologist appointments are hard to come by and NEVER come that quickly.
I am so so incredibly thankful.
I am confident that in 10 days I will begin aggressive management of this disease, probably in addition to my Plaquenil and methotrexate, and Doctor Wrong will be a bad memory.
I didn't write this just to vent though.
If I have had this much difficulty getting help, as a nurse who is familiar both with the medication needed and with navigating the healthcare system, I can't imagine how challenging it must be for people who are facing serious illnesses with no medical background.
So, I have a few thoughts for dealing with a bad doctor situation:
First, you don't EVER have to keep seeing a doctor. Whether it's because they don't listen to you or (like me) you've gone for awhile and they refuse to make changes or even if it's something as simple as not getting your calls returned, if the relationship is not working, you need a new doctor.
Second, you may have to try several avenues to get the help you need. I've had to really chase this referral to finally get in at UAB - because our healthcare system isn't terribly pro-patient - but, eventually, you will find what you need. Don't give up. Enlist a nurse or doctor friend to help you. They will likely have some ideas that you may not have thought of.
Lastly, you know your body better than anyone. If you know something is wrong, insist on help. And insist on it right away. Don't worry about being pushy. It's your body and it's the only one you have. Never let someone tell you it's nothing when you know that it isn't.
The more I've thought about Doctor Wrong, the more I wonder if he wasn't as desperate to be aggressive because he views some of the bad things (like knee replacements) as inevitable. For all I know, they may be, but, even so, I will do all I can to be as healthy as I can. And I insist on having a doctor with the same attitude.
And, if knee replacement day does come, I want rainbow colored knee braces, a leopard cane, and a three month supply of sea salt gelato in the freezer.
And I'll push through that too.
Without the help of Doctor Wrong, thank you very much.
