Tag: CRPS (formerly RSD)

Saturday Blog 18 November 2017

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, CRPS, depression, mood disorders

Saturday Blog 18 November 2017

I had a busy day. I woke up early, no thanks to my fricken cousin who wanted to return something to my mother. He woke her up for her to go downstairs and let him in. I was wondering what I was going to do today. I decided that I needed to change my sheets. I wanted to put on a hospital blanket because sometimes the comforter is too warm as my room gets really hot now that my mother turns the heat up. It needed to be washed so I cleared off the washer and put it in. Then I made breakfast. I made oatmeal pancakes. They were good.

My next adventure was to go to the square to get some gluten free flour and some eggs as we were running low. The flour was expensive. For a small bag, it was like $4.59 and I don’t think it was even a pound of flour. I hope my sister’s mother in law likes this cake I will be making for her. She is always picky because she has celiac disease, which I understand but she is such a bitch about it. My mother makes desserts that she can’t have so I wanted to make something for her that she can have. She can take it home with her, if she likes it, as I won’t eat two cakes. I am making a regular one as well. I plan on making the gluten free one first and then use the regular flour. This way I only have to wash the mixing bowl once.

After I got my two things, I went to the bus stop and missed it by like 5 minutes. The next one wasn’t for another fricken hour. I caught the bus to the Hill and waited for the bus home there. My ankle was hurting so I didn’t want to wait at a bus stop.

I came home and rested for a little while before clearing off my bed. My mother had folded the blanket so I brought it upstairs. Once my bed was clear of my “office”, I took the bedding off. Then I wrestled with the clean sheets on my bed. My back was killing me and my ankle was being a fuck. I wanted a shower but knew my ankle would divorce me if I took it then. I was so wiped out that I took a nap. My mother called me around 1430 but I didn’t pick up as I was so damn tired. She wasn’t feeling well as her sugar dropped. She had taken some pain meds for her back and it made her sick. Poor thing has been puking everything she eats. Her sugar has stayed low. I’ll check on her throughout the night.

After I woke up, I decided to take a shower. I was sweating as my room got hot and I was really warm under the blankets. I have the window open but no cold air was coming through. After I finished my shower, my brother in law came up to look at my ceiling fan as it has been making noise. He said the motor is going, which I suspected. I have been using it so much this year. Now I need to get a new one. I shopped online for one to get an idea on the price. He told me which kind to get. He said it would be $40. HA. NOT! I wanted one with a remote. Home Depot didn’t have any that came with one within my price range so I checked Lowes. I found a nice one for $123. A little bit out of my range but it looks really nice and comes with a light dome. I didn’t want one like the one I had which was 4 light bulbs. I have a small room and just use 2 bulbs that are energy efficient. I am going to check Amazon to see if they have the fan I want at Lowes. Maybe I can get a cheaper price. My bro in law said he will install it for me. I just hope it is sooner rather than later. He takes his time doing things and I really can’t be without a ceiling fan. I cannot tolerate heat at all. I rather be cold.

I had to cut my budget expenses to pay for this fan. I won’t be eating out at all this month and because my next check comes after Christmas, I won’t be able to get anyone any gifts. I feel bad about this. Every year is the same. Last year I was able to get gifts for my sisters and their kids, and my bro in law and mother. This year it won’t be happening. I still need to repair my screen that I broke, but that won’t be until next pay period. I don’t think it will be that expensive. I just hope they can go by the frame as that is still intact. Otherwise, my brother in law will have to measure for a new one.

Finally some concrete answers

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Finally some concrete answers!!

Before going to bed last night, I emailed my neurologist that I went for the bone scan so that he would know and then get back to me about what the treatment was going to be moving forward. Late this morning he responded and said the scan showed I did have some bone changes and clinically I do have CRPS (Complex Regional Pain Syndrome). He wanted me to go on some anti-convulsant but I briefly looked into it and it has a lot of nasty side effects, which doesn’t appeal to me. He is going to discuss it with my psychiatrist and see what she has to say. I emailed her to tell her he would be in touch but I am not thrilled to go on this medication. It’s new and most likely will cost me some big bucks come the new year. But we’ll see. I finally have a concrete diagnosis.

This morning was a fucking joke. My alarm went off and I should have put it on snooze but I turned it off. Unfortunately, I went back to sleep for an hour, waking up to some text messages. I had just enough time to try and catch the 7 am bus but just as I was approaching the corner, it drove by. I had to wait for the next one at 0725 but it never showed up. It was freezing out and I didn’t wear my jacket. By the time the bus to the Square came, I was running late to see my psychiatrist. I just ordered espresso from Starbucks and a donut and then made my way to the train station. I got to the Station when my psych called me to say she was stuck in traffic on the highway. She hasn’t moved in at least 10 minutes. Yikes! We rescheduled and I caught the bus home, with the intention of going back to bed.

It was really cold in my room so I shut the window part that I opened. I took my pain and blood pressure meds. I also started with the new weight loss pill. I plan on taking it in the morning in case it makes me jittery. I tried going to sleep but I couldn’t so I played with my phone. I decided to take the AC out of the window and then try again for sleep. I opened the window to take the AC out and it almost fell out! Crap! I couldn’t lift it to bring it inside. Somehow I did, at the cost of breaking my screen. It flew out of the window but that can be easily replaced. If the AC fell, it would have wrecked the roof and porch below. I went downstairs to retrieve the screen outside. I also told my mother what happened and that I finally have a diagnosis.

I played with my phone some more and then I was getting sleepy so laid down. I don’t know what the fuck I did but my ankle didn’t like it. I screamed. Then I turned over to take the strong pain meds and it hurt more. I was in complete agony. It was easily a 14/10. I just wanted to die. I started getting a pain anxiety and feeling like I couldn’t breathe. I took my meds and an Ativan. I tried distraction but it was so hard. I just laid there moaning. Then my mother called to ask if I could go downstairs to bring up her gallon of wine. I told her I was in a flare and couldn’t move. Someone stole it by the time she came home. I feel bad.

Finally the meds kicked in and I was able to sleep for a few hours. I felt better but I was still in a lot of pain, not as much as I was but say a 10 instead of a 14. I had to use the bathroom so had to get up. That was torture. I used the cane to get around because I didn’t have time to put the boot on. It was really hot in my room as my mother turned up the heat. I was sweating. She was making dinner so I had something to eat and then I went back up to my room with the mail. When I came up to my room, I opened the window and turned on the ceiling fan. The ceiling fan started making some noises that were annoying me so I turned it off. I asked my brother in law to come look at it when he got home from work. I hope it’s fixable. I also asked my mother to lower the heat. Hopefully my room cools down. I fucking hate the heat!!! And my room has two settings, unbearably hot and freezing cold. I rather be cold because I can put on layers and snuggle under the blanket.

drained and knackered

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Drained and knackered

I woke up around 4 because I had to pee and to take more pain meds. I had such an awful night. Around 2300, I had paged my psych because I was going out of my tree and I needed to hear her voice. She called me back right away and I told her what was going on. I told her I wanted a prescription for hope and she laughed. I was feeling so hopeless it wasn’t funny. I had posted something on Twitter and someone reported it as if I were in danger to myself. I think I know who it was and blocked him. I was so pissed because I couldn’t use my account until I answered their questions. I have removed my Twitter posts to write to Facebook. I just don’t need the hassle.

I got up and dressed to go to PT (separate blog). I was drained by the time I got there. I got some coffee and a donut. I bought some pumpkin donuts but I didn’t feel like eating them. I will have them for breakfast tomorrow morning when I get to Starbucks. I really didn’t do anything in PT, we just talked about different things and she gave me a list of things she wants me to do.

I got home and I wanted nothing more than to take a nap but it was too late. I needed to eat something but I had no idea what. I finally settled on some sliders. It helped wake me up some. I was ready to fall asleep so I decided to shower. Not a good idea. My ankle gave out after I had rinsed off. I was in a lot of pain. I just took some pain meds so I hope I’m not up all night in pain. I got the appt with the neurologist tomorrow morning and it would be good if I am sleep deprived. I told the PT that I really want this neuro to put it in my medical record that I have CRPS because my PCP doesn’t believe anyone. It’s so annoying because I have more than just chronic ankle pain.

The brace clinic got back to my PT and I need to get a script for a brace from my PCP. She wanted me to call my insurance because I had an AFO they won’t pay for another brace within 5 years. I didn’t get my AFO through my Medicare, which is what I am using for everything these days. So I don’t think there is going to be a problem.

I’m ready to throw my laptop against the wall. I’ve had to adjust the screen multiple times to get it right. I so need another screen. Two weeks and I can get a new one. I hope it solves the issue and it’s not the wire itself that surrounds the screen. That will be tougher to replace. If this doesn’t solve the issue, I will get a new laptop. I will buy Microsoft Office 2016. I am currently using Office 2010 so it’s time for an upgrade. I love this laptop but it is getting old and I don’t want more things breaking on it should the wire need replacing because I will have to take everything out to get to the part. Sucks the way they have constructed it like that.

PT Blog

by Midnight Demon, posted in blogging, chronic physical pain, depression

PT blog,

I had PT today and she is really good. We talked about things like flares, positions that set off pain, etc. Today we talked about desensitization. She wants me to put something soft, like a pillow case or cotton ball on the areas of my foot/ankle that are problematic. I only put it on for a few seconds before moving on to another area. I go up and down, where I hurt and where I don’t and then move on to something else, like the smoothness of a plastic pen. She was really specific with me. I told her the area that I would have trouble reaching due to my range of motion due to my back injury and she said I could skip it for now. The next thing to move on after these items was a towel as that is a rougher surface. After I get used to this kind of touching (you need to do it, not someone else), the next step is to depress the item for a few seconds. If it causes you more pain or flare ups, DON’T DO IT! She stressed that for me.

She also went over the results of the Recognise app (found on Android/iPhone). It is a paid app but worth it. She said that at this point my brain needs to be retrained to distinguish my left and right. At first I didn’t do well as I thought I would for the basic test. I got better and she showed me how to change the parameters as I find it easy. It is a cool app and when I am bored I use it as well as a few other times a day as my homework. I strongly advise getting this.

I brought up some issues that I like to do, like standing more for 10 minutes in the shower or being able to make a small meal, like pancakes, without having to sit every few minutes. We went over my back injury and she wants to help with that. I cringed as anything to do with back exercises don’t usually work for me because it seems like I work on one set of muscles and another set goes off in rebellion. So either way I am in pain.

We decided to work once a week and if I need a break, that is okay too. I see her till mid November. I’ll let you know how it goes.