Rheumatologist Visit

First of all, I’m going to apologize once and for all about not updating very often.  Between having some internet problems, and my arthritis, I just can’t update very often.  I’m sorry in advance, but I refuse to keep apologizing for something I can’t change.  My hands just won’t let me type very often for right now.

   So, I got back from Ecuador without a problem.  I had a FANTASTIC trip.  I saw and did all kinds of fantastic things.  It was an incredible experience, something i fully intend to repeat as often as I can.  I will be posting more on it, please be patient with me.  The RA flared really badly while I was there however, so it wasn’t the easiest trip I’ve ever been on.  However, God was faithful and my team was soooo helpful and I made it home in one piece :).

   OK, now for the update on the Rheumatologist visit.  Several of you have been asking about it, and I appreciate your care.  I went to see Dr. Craig in Spokane, Wa on Tuesday, the 17th.  He was fantastic, I really appreciated him.  He started out by introducing himself, and GENTLY shaking my hand.  That was a great start to the visit, as shaking hands really hurts right now.  The base of my fingers are swollen, and very tender; so shaking hands hurts.  He gently shoke them, and told me he would be gentle until he knew how bad they were.  I thanked him 🙂

  He then asked tons of questions, trying to get to the bottom of what was going on.  He then did the usual check of every joint, most of which were sore and swollen and have limited range of motion.  He showed surprise a couple of times, including when I told him how long the morning stiffness is lasting currently, and when looking at my hands.  At the end, he said he is almost certain I have Rheumatoid Arthritis (RA) and not another related disease.  However, he did a bunch more blood work (since he has special lab equipment and can do some more specialized tests).  He said that given the severity of my disease, he was almost certain it was RA.  Apparently, nothing else usually gets so bad so fast. 

  While this wasn’t exactly the news I wanted to hear (I don’t want RA!!!!!), he was also very encouraging.  He kept repeating over and over “we will get you feeling better”, which was wonderful to hear.  I would LOVE to feel better!  So, he wants to be pretty aggressive with treatment since it is so severe.  The only joints that aren’t involved right now are my spine, my hips, and the last joint on my fingers.  Every other joint is tender and swollen, and limited in motion.  So, the plan is to start Methotrexate, try it for 8 weeks, and then go see him again.  If it’s not much better in 8 weeks, he wants to add another drug on top of the Methotrexate.  He said that since we can reverse inflammation, but not damage, he wants to stop it now; before it gets any worse.  He wants to be aggressive with it before it damages things.  This sounds like a perfectly reasonable approach to me, as joint damage is NOT what I want!  I want to lead a very active life for many years, so I’m all for controlling this very well and quickly.

  Now, Methotrexate isn’t a barrel of fun either.  In stronger doses it’s used as a chemo drug.  In small doses, it’s used for RA by stopping my body from attacking myself.  So, I filled the prescription for it, and will hopefully start it this week.  It can have some nasty side effects, including liver problems, so I have to wait until my liver tests come back before I start it.  That will hopefully be in the next week.

   Overall, I was very pleased with the visit.  He sat down and talked like he had all the time in the world, and took the time to thoroughly explain things to me.  Unfortunately, I was exhausted at the appointment, so I didn’t ask quite as many questions as I would normally.  However, I’m making a list for next time.  Hopefully I will be feeling better by the next visit, so my brain will be working a bit better.

   One thing he was pretty adamant about was taking care of my joints now so I don’t damage then while the inflammation is so high.  Unfortunately, this means he wants me to take a break from the rescue squad.  While I HATE to do this, it does seem important.  He’s the third doctor now to tell me to do this, so I finally gave in and let him write the note.  With so many joints involved, getting on and off the floor and into and out of cars/ditches/etc is getting harder and harder.  The doctor was also adamant that I will be able to go back to running rescue, in fact he kept saying “I think you’ll be back to it sooner than you think”.  Now, having him write the note and me actually turning it in are two totally different things………..

   So, that was the visit in a nutshell.  We discussed several things, I learned allot, and will continue to learn.  Their office staff was also fantastic and very supportive.  They took NINE vials of blood (I asked if the CBC was the last one to be drawn, so they could tell how much they had taken :).  They also did a baseline chest x-ray, so they can compare it if I ever have any problems from the methotrexate.   

   So, while I was really grateful the appointment went well and that I am one step closer to feeling better, It was also disappointing too.  I guess I was hoping that he would say it wasn’t  RA, it was something else treatable and that he didn’t need to see me.  Instead, he was talking about how severe my disease was, and long-term things (like repeat hand x-rays in a year).  No offense to him, he was nice, but I don’t want to see him next year!  Or next month, really.   Denial is a wonderful thing, for awhile, but eventually its gotta go.  This visit just stripped another layer of denial away, so this week has been another long week of learning to adjust and cope; not just put up with something temporary.   I would trade my joints for new ones in a heartbeat, any takers?