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Dawn Could Use Our Support
I heard from @dawnt and wanted to share a quick update for all. She could use some support and encouragement as she waits until March to see the specialist again.
Dawn says, “I’ve not been feeling well for a while. Mental health wise I’m actually doing pretty well. I’ve got a new therapist that I’m getting used to working with, in preparation for my long-time therapist’s retirement coming up at some point before November 2023. I had a scan done earlier this year and there was inflammation and damage in my lungs that wasn’t there before. I was noticing more shortness of breath, and got the ok from my ph dr to increase my oxygen. Since January I’ve actually gone from 4 lpm oxygen to 6 lpm oxygen, am now at 8 lpm. Even at 8 lpm it doesn’t feel like enough at times.
The scan was repeated in June and the inflammation and lung damage seen earlier was still there. My ph dr suggested I see a lung specialist in Hershey because he felt it was my scleroderma causing the changes. He said if they wanted immunosuppressant medication started I’d need to see someone closer for monitoring the meds than making trips to Baltimore where he is located. Hershey Medical is ‘only’ two hours from home, while Johns Hopkins is 4+ hours.
I couldn’t get in to see the specialist at Hershey until yesterday. She feels it is some involvement of scleroderma, but based on my overall inflammation in joints etc she wants more tests done because she seems to think there could be another autoimmune issue causing some issues. Now I don’t see her again until March, but she doesn’t want to start any immunosuppressants or anti inflammatory until she’s more sure what we’re dealing with.
I tried gel knee injections in my knees earlier this year due to arthritis. They supposedly work for 6 months minimum for pain relief and lubrication, up to 14 months. I got relief for about two months. I was so disappointed. I ended up taking doxycycline a couple weeks ago for another issue, and after about five days my knees were feeling significantly better. I read up on doxycycline and found that it does have anti inflammatory properties. Unfortunately after I finished the prescription within 2 days my knees are back to being very painful. The dr I saw at Hershey Medical said anti inflammartory medication is a possibility but not until we know what has been causing these changes. Three months feels like a long time to wait for hopefully some relief and improvement. But, I waited a little over 4 years before finally getting the diagnosis of ph, so I guess three months is do-able! I liked this dr, feel she knows what she is doing for sure.
All of this has left me very exhausted.”
Dawn, we are sorry that you have noticed this decline, inflammation, and lung damage. It does sound like it could be something related to your scleroderma. Do you think that doctor would schedule you sooner if you continue to struggle with this pain? I would suggest that if you continue not to see any improvements. Anyone would be fearful and frustrated when the oxygen flow is doubled, and there is no relief. You’re not alone; we are here for you. I’m sending your positive thoughts, prayers, light, and love.
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