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deek15redpeppers (@deek15redpeppers)

Depressed caregiver

Caregivers | Last Active: Jul 23, 2021 | Replies (42)

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I am not familiar with PMR and GCA. Thanks for sharing.

My spouse and I have been best friends since age 15 and partners 24 years. She has RA, lymphedema, large kidney stone not removable and metastatic kidney cancer diagnosed last fall after an awful summer of fatigue and feeling crappy, pardon my language. Excruciating sternal pain for 3 months now from mets, but pain is being controlled by palliative care. PT might be strengthening her legs, as she can now usually get out of chairs herself. She lives in her recliner though and hasn't slept in our bed for 12 weeks. Traveling to see friends is hardly an option because they all have stairs and no recliners, so I'm having a hard time with giving that up. Also, I get tired if loading the walker in and out.

Enough whining for now. Have to get something constructive done before the grandkids come!

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Replies to "I am not familiar with PMR and GCA. Thanks for sharing. My spouse and I have..."

I am so sorry you are going through this. I am now caregiver for the second person close to me with cancer. The first one died and then I found out about the second one. I hear you about what you are saying. My heart goes out to you. Being a caregiver is something that happens to so many people and it seems like it is really overlooked and not discussed enough and there is very little practical help to be found

PMR (Polymyalgia Rheumatica) is a muscle disorder that is different for different people. Mostly, for me I noticed it when I could not turn over in bed to get out of bed in the morning, and I had so much swelling in my temple by night time that I had to remove my glasses. That's the GCA or Giant Cell Arteritis part. Many of us who have this end up losing our eye sight. For this diagnosis it's prednisone at high dosages to start, and for a while I was on high doses of prednisone. then learning how to taper off of the prednisone. I've had it for 5 years, and some people can go into remission about the 5th years, but my Rheumy didn't want me to get my hopes up, and said clearly that it doesn't happen for everyone. The goal is to get off of the prednisone, and after 5 years I've gone from as high as 60 mg. to now at 7 1/2 mg. When I first started out my primary care doc was unable to figure it out even after lots of blood work. Eventually they wouldn't even see me because I became a P-I-T-A. I was scared to death. I changed to a lovely doc who then reduced her hours, and I had trouble getting appt. on the day she was there. Then I found a wonderful young brilliant DO who helped me so much, and I got a not so good Rheumy, and then finally the best one in the world. I spent years in my recliner, slept in it, and sat in it daily. Finally I began to give up on some meds, and eventually the brain fog lifted. I still have a messed up body, but now my mental capacity is very clear, and I began to take back my life. I've also had two back surgeries, and I have titanium screws in my back that sort of hold me together. But my mobility is compromised. My husband was a saint and took care of me. Now we're back to taking care of each other. In the springtime we gave up our king sized beds, because at our ages we could conceivably need bed care at some point, so we got adjustable twin beds, (thanks Joe Biden for the stimulus check) and I can now sleep in the next bed to him, but it's better than sleeping in that damned chair. sorry about that, but I came to hate my chair. My sleep pattern was the worst part. I could only sleep about 2 hours a night. My bed raises both at the head and the foot, and last night I slept 6 1/2 hours. Some nights I can get 8 hours, but mostly about 5 1/2. I'm working my way back up. When I began to get rid of some of my meds my brain fog lifted. So now I'm determined to squeeze out every nano second doing something that I love. My hand is pretty arthritic, but I can work around it a bit. My mobility is poor, but I manage to do mostly what I want to do with a clearer head. these Illnesses are not for sissies. 🤪

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