As I was laying in bed I usually think of things I wanted to say and never did.
One thing I want to say about RA is that if you focuxson your pain you’re never going to be free from it. I know us with moderate to severe are always in pain but if we talk about it all the time, our brains will be focused into it, we need moments of clarity when we are indulged into something else, try it once.
What works for me is, doing this, or watching netflix or simply just engaging my mind in other things.
I hope this helps
Well the first of I assume many surgeries due to RA/RD will happen next Wednesday. I’m having surgery on my right wrist. My tendons are damaged, which ones, I don’t know just that they are damaged. The recovery time is 1-3 months. Should be interesting, especially since I have nobody to help me.
I’m in a rather fowl mood so I should probably end this quickly.
Wow so I haven’t written for a very long time. The last post was about Rituxan, my 4th one. Well the 5th went fine, the 6th was a nightmare, I woke up in the middle of the night with my kidney pounding out of back. Turned out the Rituxan triggered a kidney infection that made it worse because of it and my immune system. Now the 7th and what turned out to be the last, now that was so much fun, my body is so strange when it comes to medications. It will like it for years then all the sudden decide, no thank you. Well when I was finishing up my infusion 7 hours worth, I could tell I was feeling weird but said nothing because I wanted to get the heck out of there, so I ended up having to drop something off at my normal clinic, I could barely speak, my face was red, my arms were red, the receptionist called my NP to the front and she pretty much dragged me in the back and gave me an EPI pen injection, major allergic reaction/shock. So no more rituxan.
I’m on 2 oral medications that seem to be working well together, plaquenal and sulfasalzadine. Been on it for a year I think, maybe more, I don’t remember.
My hands are still bad, it hurts to type all the time but I am used to it, I’m used to all the pain I have, sorta sad in one sense. But I’m not as freaked out by it anymore. The other day I snapped my fingers on my right hand, only to dislocate my middle finger, I popped it back, hurt like hell, ended up going in, they injected my knuckle with some numbing agent. I see a hand surgeon in maybe 2 weeks I think, my RA doc wanted me to go months ago but I didn’t. I figured it can’t hurt.
I belong to a RA FB group that I recently have been not even checking in on it, I think when you are submerged in this pain and others pain it keeps your mind on that, so I made a conscious decision to no longer pay attention to the feed and to only deal with my own RA issues. It’s felt much more healthy for me.
It’s been quite a while since my last post. I’ve had my ups and downs physically and emotionally but I’m happy to report that after my 4th Rituxan infusion it appears to be helping.
My hands are just not nearly as swollen, hardly at all and when I do things, like typing, it does hurt but I’m not swollen, so knock on wood.
I am having a horrible time with my back, neck and knees, hopefully that will be taken care of soon. I’m waiting to get into a pain clinic, the one that I was with prior was an absolute horror, so by the advice of my RA doc who recommended the Dr to me, he said to leave and go to a different place..
Okay so this is the most I’ve typed in a while and yeah my hands hurt lol and they are starting to swell up, so I’m going to end this early.
My RA doc is sending me to the Mayo on the 12th of Feb. He is bewildered as to what is going on with me, whatever, I’m more than happy to go to the Rheumatology Clinic at the Mayo Clinic.
One thing though, my dog Tucker is dying, he has stage 4 unspecified metastatic carcinoma. He has surgery on Jan 8th, they removed a large tumor that was wrapped around his intestines. It’s in his lympnodes, already spread to his shoulder lympnodes as of 2 days ago they gave him maybe 2 or 3 weeks, he’s been by my side 24/7. The Mayo is maybe an hours drive from me, maybe a little more. I prayer that he’s still with me. He also has fluid build up in his abdomen, this was found 2 days ago as well. I’m more worried about my baby then myself right now. He would be 10 in May of this year. I’ve had him since he was 8 months old. Easy to say I’m more than depressed, my heart is breaking and my RA is flaring, I feel like I have a million ulcers and have had a million heart attacks. I’m going to miss my brave boy Tucker
I’m having an EMG tomorrow on my right hand/wrist. Then a full body bone scan to look for I have no idea.
I’ve been pretty stressed out lately, my beautiful wonderful dog Tucker has been diagnosed with stage 4 cancer, so I’m focusing all my attention on him and my health has not been the best because of it but I need to spend as much time with him as I can.
It’s been quite a while since I last blogged, my laptop was on the fritz.
Apparently the Rituxan is working, I have zero B cells which means, as far as my RA doc says, is good and bad, good: the rituxan is working, it’s blocking the cells that create joint damage, bad: my immune system is even more suppressed, I have been sick for over a month. At least I know why now. I’m not sure I like the being sick part, take the good with the bad, I don’t know.
I had my right hand/wrist/forearm mri’d yesterday, I’m hoping that there is nothing wrong with it other than my joint damage from my RA.
My knee’s have been acting up on my lately, all of my joints have, probably because of the freezing cold.
I’ve had insomnia since the beginning of December, my dog was sick, he had been waking me up 3 times a night to go out, my body freaked out I guess, last night was the first night I didn’t wake up, happy about that.