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My blood and ANA are better than projected. There are no new blood clots and no infections so things are good. I'm pleased with today's appointment.

I went to see the Hematologist but canceled my therapy appointment bc I couldn't do two heavy assignments back to back. As a matter of fact, I had a more physically taxing appointment than expected bc I had a wheelchair malfunction and had to walk a good distance in a short period of time. I'm uncertain who put the Cancer Center (Oncology /Hematology Center) where it is but it was a terrible decision. It's far. Parking is terrible and if you have a wheelchair malfunction you're screwed! I was screwed but I still made it to see the doctor.

Because pain has been relentless, he asked if I want to go to the pain clinic. I said no. I said I'd continue doing what I'm doing on my own. No thanks to opioids. I'm not interested in addiction problems on top of all this. I fear ending up like others w Lupus, in rehab bc they got addicted. I can't risk it. For now, for me, the decision is to stick with homeopathy, all natural, non-addictive substances and teas.

The doctor calls me his miracle and smiles really big at me. I love it. He spent 3 months with me, every day checking in and doing what he could to save a case he called a 'hemaglobin nightmare.' lol šŸ˜Š At the time I told him that I'm the patient he trained for all his career and that I would need him to truly 'show up' and 'do this thing.' There was a lot of pressure but he and the rest of the team did show up for the job! I'm proud of them.

Today I'm tired and in pain yet I feel very alive. I finally got a meal down that I kept down. I had to sleep for several hours after the appointment but that's ok and nothing unusual. It exhausts me to leave the house. It happens but I'm in a pretty good place today despite the physical limitations.

Faith

After the amputation there has been significantly less CRSD pain. I will not attempt to explain it bc I don't know if it's a combination of the nerves and pain medication making a difference. I simply don't know why there's less CRSD after the amputation, but there is. I could be bc the nerves down there died. I just don't know, but I believe there is a significant difference nearly a year after the surgery.

The last few days there's been Lupus pain and pain associated with nerve damage. There's no burning pain like what happens when CRSD rears its ugly head. The Lupus pain aches deep though. It's relentless. The last three days have been pretty bad for me. I'm not just fatigued I'm weak, foggy in the brain and hurting from head to toe.

As if Lupus isn't enough, there's the anemia that I'm dealing with as well as lack of appetite for the last few days. I forced myself to eat two days ago but I've had nothing but Saltines since. I'm not hungry. I'm just tired, so tired at times that I have to sleep right then and there!

Soooo, those are my complaints for the day. Argh. It's a Lupus life!

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