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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 😊 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!

1

Thirteen years I walked past my therapist's Christmas Cactus and never thought to ask for a start until now. 

The three spider plant starts from the surgeon are growing like weeds. They were so tiny when I got them.

I snagged a start from the hospital's bed of pathos. It's being rooted in the fish tank with the Betta fish I had when I was in the nursing home. 

I wish all these plants could go in one planter but they have different requirements.

Spider plant, Christmas Cactus, Pathos, Dumbcane, large Peace Lilly. These are my memory plants. 

Why on earth would I wish to remember one of the worst things I've ever been through? Because it has changed who I am. It's changed me for the better and the worse, with the hope of good coming out on top.

Today in therapy we talked about how I have a fear that I'm going to just drop dead. That my health isn't reliable and there's no sense in putting forth effort when I may throw a blood clot and die. I hope such morbid fears will subside in time. I'm counting on it. I'm counting on growing right along beside the green leaves that fill my apartment. 

.........A visitor asked if I'm trying to make a paradise out of my home. The answer is yes. 

Jordan

7

I stay seconds from tears. I can laugh and engage but it feels like tears are just behind my eyes waiting to escape. Today I listened to a set of symposiums on courage and just balled my eyes out. I do not feel courageous, I feel broken. I feel like I've got a lot to be happy about but lately tears have remained in my eyes.

I'm tired. I cleaned my little apartment today then went to the grocery story. That took a lot out of me. My foot is screaming! What's new? The pain all over my body is unbearable. It makes me want to do anything at all to make it stop. ...continue reading "Lupus and Heroin"

4

I'm finally here. It's been a very long time but I'm finally in my own place. What a relief! I love it too. It's very different from any place I've ever lived bc I've never lived in an efficiency / studio apartment. This is about 500 square feet so it's not that terribly small. There's space to move about. I'm not cramped or anything like that, I just don't have a separate bedroom. That's not a problem for me, it's just very new. I'm going to have to downsize some more, which I've been meaning to do.

One difficult thing about unpacking is that I'm trying to do it with one foot that's still very sore and still open incision in three spots. I'm pooping out quickly. It used to take me days to unpack but this will take me quite a bit longer in my state. ...continue reading "Here at Last"

6

I've gotten a hold of all the paperwork I need to apply for the wheelchair accessible apartment! I have everything I need! Oh I can't wait to have my own place again. Since this started I've had zero personal space either physically or environmentally. People touch and prod, observe and examine, when and where they like. And they've done it since February when the train wreck began. So now after 5 months of living in a hospital with 2 months of that 5 in a nursing home, I will have night time privacy.

Coming w me to the new place (when I get one) will be the staff: nurses, CNA's and the physical therapist. I'll have a CNA 3x a week for four hours. It seems like a lot but there's still a lot I'm unable to do for myself. ...continue reading "Apartment Possibilities and the Wheelchair"

Snapshot fma
Snapshot

The last few days have been torture. I hurt from the top of my head to the soles of my feet. The amputation site is having an electric storm of shock and neuropathy. It's been a bad few days and I've done very little reaching out. I've just been waiting for medication time!

The foot that was amputated coincidentally was the foot with Chronic Reflex Sympathetic Dystrophy. Though amputated for other reasons, I hoped the RSD fire and pain would stop, it didn't and won't. It doesn't work that way. ...continue reading "Enduring the Days"

1

I stood twice then transfered to the toilet on my own. I needed help with getting back in the chair and getting my brief on. I transfered to bed on my own, exhausted, discouraged a bit. But it's early, right? It was only the 7th that I had surgery.

The CNA asked me if I would have to pay full price for a pedicure. We both laughed. ☺ The child is sick. Lol

I felt very "disabled". There I was stranded on the toilet stark naked except for the depends hanging low and left. Obviously I could take the victory in all this but I can see what all it took to wrestle w the hospital gown and lose the battle leaving me butt naked like a toddler on a potty chair. I got it in the right spot, and on time. What am I, two?

Every minute counts because every minute is energy to complete a task. If I miscalculate and overestimate, then I'm screwed. This is where humility comes in. Accept the limitation or pay the consequence.

Today I counted right. Today I can be irritated and I can laugh at myself.

When I realized I'd need help getting back in the chair I laughed at myself because I was stranded on the toilet. Go figure. I knew I could get back in the chair but I couldn't manage the brief, get dressed and wash my hands. So I pulled the "Help Me" call light and waited. I told her what I had energy for and what I needed help with. A few min later I was successfully back in bed.

It's an ordeal, a math lesson, a test of humility. It's a reminder of what can be taken for granted and of the times we have to let go.

Good things that happen this week
First and foremost, thank you for letting me survive the surgery. I was scared.
Thank you for all the friends that showed up.
Thank you for good sleep and times where I was able to cry and release grief.
Thank you for reminders to see the bigger picture, see beyond this moment and know that both now and the future matter.
Thank you for humor with friends and nursing staff. We had a hilarious time tasting guava fruit. It was fresh but not ripe, and very nasty but funny to see the facial expressions because of the tart taste.
Thanks for strong pain medication that keeps most of the really bad pain at bay.

Faith

2

After another fall I had to go to the hospital. I was there most of the day. I've hurt my back and require in home care for a few days so tomorrow a friend will come to stay with me and Clyde.

There's degeneration where I hit which means I smacked an already damaged area. Man that hurt. Clyde was right beside me the whole time. I was in the house when I fell.

I was given 2 shots for pain but my body ate it up, didn't do much.

...continue reading "Hospital Visit"

I'm no longer sleeping the way I was and the med side effects are starting to get better.

I got what I asked for, a reprieve from menopausal symptoms while managing shingles. I should see a start up of symptoms in the next few days but I did get almost two weeks of relief that I so very much needed. The Black Cohosh has been increased a third time with the hope that there will be less depression and more functionality. Anxiety related to PTSD has been through the roof but the other stuff is calming down.

Faith

 

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