Happy Father's Day to all you dads out there, and to all those moms that fill the role of both parents. I'm a single mom(divorced) with an 8yr old son. His dad has chosen to not be in the picture, his loss. A few yrs ago I decided to make Father's Day a fun day. My son gets to choose the activites of the day. Our pool has a cookout wtih a DJ and inflatable bounce houses. Little man is super excited about
this and wants to be there as soon as the gates
open. Makes an easy day for me. I know a ton of people there so I can talk with friends, or read a book. Yay for summer :)
Saw my pain management dr. on Thurs. He is extremely frustrated with the way things are going. Both sides of my jaw are very very swollen. The JRA is still very active in that area. Since the joints are now titanium, the inflammation is not in the joint capsule. Instead, it's in the tissues and blood vessels(vasculitis). This is hard to treat since you can't drain the fluid. My speech is not as clear since I can't get the muscles to move the way I want to. He's also concerned about a new problem that has popped up-I'm having a hard time swallowing. You know that feeling you get when you swallow and it goes down the wrong way? That's what it feels like. I end up coughing stuff back up. Dr. measured my jaw opening at around 11mm. Very small-I often end up aspirating when I get sick/cough. I'm the only jaw replacement patient at the practice(as I am anywhere), so dr has no idea as to the cause or what to do. He had me come back to his office and called my surgeon and put him on speaker phone. Surgeon hasn't had this problem occur in patients either, so he hung up to call the dr who created/invented the type of joints that I have. Hopefully I'll get some answers tomorrow. In the mean time, I'm to use the GJ tube and limit things by mouth.
Pain dr could tell I was still in pain. High pulse and bp. Also obvious swelling in joints. Pulmonologist upped the pred to 60mg last week due to pleuritic pain, but it didn't help much. I have dilaudid that I can take 4x a day which helps a bit. Dr added avinza in the morning. I've never taken it before(which is amazing after 10yrs in pain management). How do you guys like it? The only downside of it is that it can't be crushed and put in the jtube since it's extended release. We've tried various pain patches in the past, but I break out all around the adhesive. I need an extended release med, I just have to be careful with the gi issues.
Busy week ahead. Little man has a soccer day camp at Virginia Tech each day. It's from 9-12. We are about 25min from campus so it's not worth it to go home and back. I'm looking forward to finding a quiet place on campus to read. Tues I will drive down to Duke since I have an early morning rheumy appointment on Wed. Next week isn't much better: Drive to MCV(Richmond, Va) to see the jaw surgeon on Monday. Then Wed I have to drive back down to Duke for a chemo infusion and IVIG. I'm there until Friday. I keep trying to convince my drs to meet me at my house since it's halfway between MCV and Duke. I'd even host a party! So far, no takers :(