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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

 

Still sleeping and recovering. Tuesday morning I went for treatment but here we are Thursday evening and I'm still exhausted. My pain levels are back to 7-8. My appetite is still gone.

Clyde has been beside me the last few days which has been helpful. Despite sleeping so much, I get up by alarm 4x a day to take him outside. Today we played ball briefly.

I'd describe my mood as baseline. No suicidal issues and no self harm. Anxiety is high and being managed. I'm still on reprieve from perimenopause symptoms. I'm typing in bed but I'll soon return to the laptop.

Faith

1

Again, this is not a rough patch, it's a field w pits and quicksand. It's a field where pain is as common as flowers.

I've had another small emergency doctor visit bc my pain has been too high for too long. Between Lupus, CRSD and shingles, my threshold was met quickly.

When the pain stays high like that I go in w/o a second thought. I used to feel bad for needing to be given pain treatment but they know me and treat me well. They don't act like I'm just there to get high.

I'm home now and somewhat tired but my mood is ok. Interestingly enough, I now have to try to deal with the pain meds. It's not like dealing with the pain, but there are issues related to that type of pain medication in my body. At the moment there's relief from what I was feeling so I won't complain too much. 

Faith

Broken Faces A lot of tea sipping, a lot of sleep, that's what's been going on over here.

Anxiety is very high as are my pain levels. I've got an open sore on my leg that hasn't healed in three weeks times so I have to get more treatment for it. That doesn't worry me though maybe it should. It's just that I've not been given any kind of off colored diagnosis so I'm like, it is what it is. I have Lupus, I don't heal well. It takes weeks to heal a simple wound. It would be nice if it didn't hurt so much but like I said, at this point it's just taking its own sweet time healing and hasn't morphed into something else. ...continue reading "Cuppa. Sleep. Work. I’m Better."

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