Wow. This post is going to be all over the map (literally) as a lot has happened since my last post.
First, I had the major honor to be invited (and attend) Creaky Joint’s Joint Decision Empowerment Summit in Boston which brought together some of my favorite bloggers, members of the Creaky Joint team, and supporters from Janssen Biotech, Inc. (who also sponsored my travel arrangements for the trip). The bloggers included:
- Angela Lundberg—Inflamed: Living with Rheumatoid Arthritis
- Amanda John—All Flared Up
- Cathy Kramer—The Life and Adventures of Catepoo
- Leslie Vandever—RheumaBlog
- Dina Neils—The Titanium Triathlete
- Leslie Rott—Getting Closer to Myself
- Mariah Leach—From This Point. Forward.
- Eduardo Flores—Rheumatoid Arthritis Guy
- Rachelle Crow-Hercher—Spoonless Mama
- Brittany Johnson—The Hurt Blogger
If you aren’t familiar with these amazing people, you should check out their blogs. Their perspectives, wisdom, and insights about life with RA are certainly worth your time.
There was a lot of laughter and a lot of tears but mainly there was a determination not to let RA beat us and lots of brainstorming about what kind of education/information needs to be made available to those living with RA. (One of the most powerful statements I heard was from RA Guy who eschews labels and said, “When I’m in the doctor’s office I may be a patient, but otherwise I’m someone who lives with RA.”)
Immediately upon my return from Boston, I had my Remicade infusion. This is the first one after the three loading doses. After the first two loading doses, my rheumatologist raised the dosage from 6 mg/kg to 7 mg/kg because the lower dosage wasn’t being effective. When she stopped in during this infusion we discussed the fact that the Remicade still didn’t seem to be working even at the higher level, so she increased the dosage again to 8 mg/kg. She said she wouldn’t go to 9 mg/kg. I really can’t tell any improvement so we may be switching treatment options yet again. (Sigh.) I’m running out of options. I see her again in the middle of December and we’ll make a decision then.
I also finally got to see the pain doctor about my compressed SI joint. (Let me tell you, traveling with that condition is not the most fun I’ve ever had.) He agreed with the assessment from my orthopedic surgeon and my neurosurgeon that an injection in the joint would be a logical place to start. If the injection worked for the pain, then the culprit was, indeed, the SI joint. Otherwise, we might need to investigate other potential causes. As it turned out, there was an opening the next day for the procedure, so I went in and had it done. The procedure is done with a deep joint syringe under a fluoroscope so the doctor can see specifically where to put the medication. This is important not only to ensure the anesthetic and steroids reach the right spot, but because there are a lot of nerves that need to be avoided in that area. Good news. The injection nailed the pain. This is not a cure, but a temporary measure, so I will need to go in every so often to have the injection done again.
As good news as this is, I told a friend that it’s a lot like making a clean spot on a dirty floor. The one spot that doesn’t hurt (my SI joint) makes it especially obvious that all my other joints are swollen and in pain from RA. I’m to the point that my hands and ankles wake me up at night. No amount of Tylenol, Tramadol, or hydrocodone seem to be able to help me achieve a good night’s sleep.
So by the end of the week, I was feeling like a pin cushion. They had to stick me four times to get the IV for the infusion started. For the SI joint procedure, they put you under light anesthesia and it took two sticks for the IV plus the actual injection sites. Ouch.
On top of all this activity, I’m in the midst of two major projects that have me sitting for long, long hours in front of the computer. All the stress and inactivity isn’t helping the RA but, as a self-employed consultant, there is no such thing as “bad” work.
But it’s the holiday season and I’m looking forward to Thanksgiving next week. No great plans. Just kicking back with my husband, having lunch at a favorite restaurant, and perhaps hitting a movie afterward.
I hope your life has been busy with good things and the forthcoming holiday season brings you and yours many blessings. Thanks for checking in.