Hey guys.
Sorry for not posting much and even more sorry for not offering more support. I think I'm just stuck in a rut. A HUGE rut. I know it's normal to get to this place, but some ruts seem deeper than others. I think I'm just so very very tired of waking up each day and not knowing what could happen. I have a duffel bag in the car packed for those unexpected admissions, and I have a bag of clothes for my little guy in his closet to last a few days. That way my parents won't have to sort him out. Trust me, this is a good idea because they have put him in some unique outfits in the past.
Jaw is still healing. As I've said many times before, this is a side effect to the TMJ replacements that has not been documented before. The bruises are gone so that's a plus. People say my speech is more clear and it seems that I'm able to
open more freely. Not wider, but more smooth. Right now it seems we are stuck at 18mm. Functional is 35mm and the norm is 40mm. I think I've explained this before, but you should be able to take your pinky, ring, and middle finger, and fit them in your mouth with it wide
open. Many people have extra room(show-offs
) I am now picturing you guys testing this out. I can get my pinky. I'm doing PT 3x weekly for the jaw which includes lymphodema, e-stim, dry needling, and massage. I then go to PT 2x weekly for the hips and knees. The second PT is a very good friend of mine since I've been seeing her close to a decade. Unfortunately she is not certified in dry needling, otherwise I could see her for everything.
Spent a few hours in the ER this week getting fluids and potassium. My heart rate was back up in the 160s during PT. I still have pain in that rt lung where the PEs were located. Blood work showed an elevated d-dimer but that's not the most accurate test for clots. My O2 stats were pretty good and an ultrasound of my legs showed no clots. Heart rate went back down to the 120s which is normal for me and I actually got to go home. First time since Aug I've been in the ER and allowed to leave-woot woot. As you all know, I've been inpatient 100+ days since Aug, including the month down at Duke.
Speaking of Duke, tomorrow I drive down to Durham to try a new infusion therapy. I was going to drive down tonight and stay in an hotel, but I'm worn out. Little man had a soccer game and I look like a lobster. I always get a burn the first real nice day of spring. This winter has been so crazy, I didn't even think about
sunscreen. It's a 3hr drive and my appointment is at 10. I'm used to getting up at 6 anyway to get little guy out the door for the bus, so it won't be to bad. I may stay overnight if I get any side effects. When I took Cytoxan I would get an awful headache. The dr would pretreat with meds and it still wouldn't help. Hopefully this med will have little to no side effects.
The rest of the body is very achy and sore. Some of my joints are swollen to where they don't even look like mine. Also having quite a bit of pitting edema down the lower legs, ankles, and feet. PLEASE PLEASE PLEASE let this infusion work. I've also torn the corneas in both eyes which isn't helping.
Pain wise, I think Im the best I can be. The jaw spasms are intense. My pain dr has the other drs and nurses come and feel the spasms since they are so off the charts. There's just no way I can take enough pain meds or muscle relaxers to get relief and still be a functioning mom. I know that many of you guys are in the same situation. I see my pain dr on Wed. He's considering a direct admit for pain control for a few days. He's trying to find a way to break the cycle.
So-cross everything you physically(even if it's just your eyes) can that this new med will provide some sort of relief. Please know that I think about
this site often. I so wish this site didn't need to exist, but I'm glad for a support group-even if we don't meet in person.
Oh-I went and purchased a FitBit. It's a bracelet you wear and it sends info to the free app. I'm trying so hard to lose the steroid/cushing's weight. I gained close to 30lbs the month down at Duke due to all the steroids. I've been on them nonstop for over a decade. Anyway, my dr knows I'm frustrated because the process of losing the weight and decreasing the pred dose is sooooooooo slow. By using the FitBit I see how much I've walked each day, how well I sleep at night, and lots of other good stuff. It's good because I can see how I improve each week.
Guess I'd better get some sleep. Long day tomorrow. I hope you guys know how much I value this site.
Hope tomorrow is as pain free as possible.