This week...Up & down. So many emotions. Yesterday I had a giant pity party for myself. I wasn't even in that much pain. It is usually when I'm not in a ton of pain that I feel tired and emotional. Because when you are in the type of paint that comes with CRPS, you don't think of that kind of thing. You just think about dying or taking something to feel better.
I'm off Valium. My awesome family doctor gave it to me to help with all the drugs given to me through my IV at the ketamine place. I have been off for over a week and that was an easy thing to stop.
|Smiling! Lower pain from resting, resting & resting.|
Anything that makes me feel different is scary. It is still too fresh in my mind. Two days ago I tried 1/4 of my lowest narcotic, Percocet. I hate narcotics with a passion. But I hate that awful pain more. I wanted to see if it turned scary. It didn't. I was so thankful. I wanted to test it basically to see if that is something I could use in the future. In case I needed to do something or be somewhere and needed to take something, I have it available.
|Thanks to my aunt for this fun picture. I made it when I was young and she saved it. It made my day.|
What else? Baths seem to be good but leave me exhausted. Like panting exhausted. I'm pretty weak from withdrawing from ketamine and Benzos. I'm also weak because I do nothing all day, almost every day. I did sit outside for a bit a few times last week. Maybe a few minutes at a time. Its 70 here in FL and that sounds warm. It isn't for me. I bundle up with winter hats and as many layers as I can get on and then sit in the gravity free chair with a blanket. And freeze.
And then other times I'm sweating and have chills. That is mostly when the pain hits hard. I think the weather gets warmer here, I will start to feel a bit better. I don't eat a lot when I'm in pain and my mouth gets really dry. Wondering what to get someone who is sick? Cough drops, any kind of hard candy and slipper socks. Yup, I'm 90 years old. My husband bought me the giant bag of hard peppermints and they help.
Resting is good usually. Laying is best since my hips hurt pretty much all the time. Not like crazy nerve pain hurt but just like they have the flu mostly.
Distractions. The more senses I can distract, the better. This is when the pain isn't crazy. Because then it just truly doesn't matter.
Did the Ketamine work? Once in awhile I get these times, maybe an hour at a time, where I feel good. Like good good. My vision gets sharper and my pain is low. I may average anywhere from 5-6 on most days. When this happens, it is at a 1 or 2. So amazing. I'm not sure if this is the Ketamine but that is what I'm attributing it to.
Would I do Ketamine again? No. Absolutely not.
So what do I do all day? I watch a lot of YouTube. Anything super positive and encouraging. Old Supermarket Sweep episodes, Bob Ross and some newer shows like Good Mythical Morning and The Frey Life. I read a lot but mostly on my phone since books are hard to hold. I talk to God a lot.
What do I eat? Well, I was eating super healthy. Like raw fruits & veggies, almonds (they are my fav!) and some grilled chicken. Then I got sick and nothing was sticking. Then I worked my way up to crackers & some pasta. I did try spinach a bunch of times but the fiber was making me sicker. I'm finally eating again and haven't had any stomach issues the last few days. I have a cavity on one side of my mouth and it is making eating hard foods ouch-y. I will get to the dentist eventually but for now I'm eating soft foods and just ignoring it. Because drilling into my mouth, close to my nerves, is not something I want to think about right now. Maybe next week. Maybe not.
I'm hoping to make it to the grocery store later today. My husband pushes me in the wheelchair. I am pretty excited that grocery stores are getting new carts called Caroline's Cart. If your grocery store doesn't have it yet, I encourage you to look it up. There is a toll free number to call.
It will still require me sitting but getting fresh food is worth it. We will hopefully be getting a reclining wheelchair soon. Insurance won't cover it which bums me out. But since the disability money came through and we have had a few more donations, we are looking. There are two places in our area that sells them. I just need to go and try them out. Which requires a lot of effort. See where the narcotic could come in handy?
|Photo credit: lakecountrynow.com|
My disability came through! This is a huge and wonderful thing. It means that I will have health insurance as well as some money coming in. Being sick is expensive. We have had so many people donate and we are appreciative to each & every one. I have a stack of thank you cards that will get written. I promise.
We have a friend, one of our best friends, coming tomorrow to stay for a few days. I'm pretty excited. We have HUGE support from everyone back home (NY, PA & even all over the world) but no real friends to come visit when I'm feeling up to it. Making new friends, especially those around my age, is almost impossible right now.
Our house is only about half done but it is one of those friends who won't care and I'm so glad. I don't have to concern myself with showering or dressing in real clothing. I wear very oversized, soft clothing that doesn't hurt and it isn't pretty.
|Our lovely Johari|
So there are my ramblings for today. Well, not all of them since I'm fading. But I'm thankful to everyone who reads & prays. Thank you!