Skip to content

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

1

The week has been quite. My regular CNA has been out for a while leaving me with only 2 half days of coverage. It's been difficult to say the least, but it's been quite, no major drama.

Saturday is one of the days I was covered for 3 hrs w a CNA. After taking care of things here we ran to Walmart. Neither one of us thought about going in the afternoon on a Saturday and how busy they'd be! We got there and the motorized carts were all in use. I decided since I'd gotten myself to Walmart I'd try to walk a little bit. So I did. Turns out I walked for 45 minutes!!

After walking my lungs hurt and my feet were tired but I was not in as bad shape as I expected to be, or so I thought. I came home and immediately went to sleep for most of the night. When I got up to go to the restroom, oh my goodness pain!! My feet let me know that I over did it!!! So, most of Sunday has been babying the painful amputation site. My left foot reminded me that it too was traumatized in the hospital and it too was over worked Saturday.

I learned that I can walk in the store but I have to be aware of how long or I'll pay the consequences like I am today. And yet I'm happy I figured out that walking stabily isn't in my distant future but much, much closer.

I know I over did it but I'm proud I took the risk to walk.

Jordan

%d bloggers like this: