Tag: chronic illness

feeling more hopeless after my neuro appt

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

Feeling more hopeless after my neuro appt

I woke up around 330 in pain. It was a hard decision whether to try and go back to sleep or stay up. I decided to go back to sleep and paid for it as I woke up late. I had just enough time to brush my teeth and get dressed before catching the bus. It was cool out and the sun had not shown itself yet. I just wore my glasses but brought along my sunglasses as I knew it would show itself later.

I went to Starbucks and had breakfast with espresso. I wasn’t in too much pain, but then I usually am not that time of the morning. Because I left late, it left no time for writing. After I finished eating, I left for the train station. I was feeling nervous and didn’t know what to expect. I would know soon enough.

I got to the neuro’s office and checked in with about 10 minutes to spare. The train was crowded so I had stood most of the way. My foot didn’t like it. After the medical assistant took my vitals, I waited for the doc. He was a few minutes late but he came. I explained what had happened and that I was hoping he could confirm the CRPS diagnosis. That’s where things got tricky. Because I have a previous nerve injury, I don’t have the “typical” signs of CRPS. When I told him that cramps had set off my pain, he became under the impression that the cramps had cut off blood supply to my nerve in my foot/ankle and thus I was diagnosed with nerve injury, not CRPS. He tested my foot and showed me the nerve branch he thinks is affected. Unfortunately, the area is not likely to show up on an EMG and the test itself could cause a significant flare up. He ordered some blood work and a special bone scan to either confirm or deny CRPS, but he thinks it is just a nerve injury. He started naming some medications that I never heard of. Only two I hadn’t tried. I can’t repeat them because he said them so fast and my knowledge of the class and what they would treat was limited. He said the treatment for the nerve injury and CRPS would be the same. I guess that is good. He didn’t really say what that treatment was, however. He is going to wait for the blood work and bone scan results to go over things with me.

I was stunned and left feeling deflated. I didn’t know what to think. I got my blood drawn and then headed home, hoping I would catch the 0930 bus. I did. The first person that I talked to about this was a friend on Twitter. I didn’t go into much detail, just summarized for her. I also told my CRPS group that I will let them know when I can process it and that it wasn’t good. I emailed my psychiatrist, who is not heavy into diagnoses anyway. She said that maybe it’s not a matter of what it is called but how it is treated. She wants me to get relief, which is what I want, too. I was hoping that I would get diagnosed properly and then finally be able to get on a longer acting pain med. Now that doesn’t seem likely. I don’t know if I will be able to continue on my pain meds. I’ll really be upset and suicidal if this happens.

I ordered McDonalds as comfort food and then took a much needed nap. My foot cramped for a few minutes before I finally woke up. I was hot as I shut off the ceiling fan and I needed to go to the bathroom. My mother made something and it smelled horrible. It was asparagus and eggs. I felt nauseous. I went to the bathroom and then went back up to my room.

My cousin had called me about an hour after I got home. She invited me to her house on Saturday for some painting thing. I told her it would depend on how I feel. My sister is going so if I feel up to it, I will catch a ride with her. We had a good talk. She is accepting of my being transgender and is happy that I am moving in that direction. She just wants me to be happy. She also told me to look into weed for pain control. I told her I was scared because I had a bad experience when I was a teen. I really don’t know if I can take it as I am under a pain contract with my PCP. I will need to discuss it with him. I rather take a pill than smoke it. I don’t know if it will be effective. Some people have found it to help them. She explained to me the different kinds. I just yes’d her. MJ is now legal in my state. If anything, I think using CBD oil might help so I can put the stuff directly on the area that hurts. It’s something down the line. I really want to try Kratom but need to research it more as there are different strains just like MJ as well as not so potent places that sell it.

I thought next week was pay week but it’s not, it’s the week after. I am bummed because I really want to replace my screen on my laptop. It’s getting worse and I don’t think it will last till December. I got to take it apart again and take a pic to send to my computer friend. The wire that connects the screen is securely taped. I’m not sure if I remove it, I need to put it back in place. Just another headache.

Tomorrow I see my psych after not seeing her for a month. It’s an early morning appt and because there is a funeral processesion going on in the late morning, I need to go home a different way. That is going to be fun. I just hope I remember.

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.

waking up in pain

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

Waking up in pain, all day in pain, can’t sleep because of pain, when will it end???

Around 0430, I woke up in pain. I had to use the bathroom and was walking ok until I left the bathroom. My foot exploded in pain. It was hard to walk back up the stairs to my room. I thought about calling my psychiatrist but what can she do? She can’t do anything. I feel so frustrated. I took my strong pain pill and some Neurontin. I also took some fiber so I can have a bowel movement. I hate being backed up because of meds.

Looks like today is going to be another day in bed. I just don’t care. I wanted to go to the Square for some espresso. If I feel up to it later, maybe I will make some coffee at home. I still have my Hawaiian coffee. I now use spring water to make my coffee rather than tap water. It makes the coffee taste better.

My last grocery order I bought some Boar’s Head bacon. It’s already cooked, you just microwave it to heat it up. I might make a bacon and egg burrito when I make the coffee. It all depends on how I feel.

I got the results of my blood tests. My cholesterol and HDL are over the normal by 1 point. My doc said that it was “very mildly elevated”. It could be the meds causing it. I’m not worried about it. If it was more than a few points, I might be. Everything else looks good.

Man my foot is hurting so damn bad. It feels like it is being crushed. I hope I get back to sleep soon but I’m not sure because of the pain I am in. I took some Ativan to calm me down as I am getting upset by the pain.

I am a cookie monster

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

I am a cookie monster

I woke up around noon. I was hungry so I made a bacon and egg burrito. My mother and sister were in the kitchen as I cooked. We made small talk. My mother was making some apple dish in the oven. The house smelled nice with the spices and apples cooking. After I ate, I went up to my room and scrolled through Facebook. My sister made cookies in the shape of footballs so I took my recycling down and found she not only had those cookies, but chocolate chip as well. I was in cookie heaven. I made some coffee and had more than a few. My sister’s brother in law was over and I told him that I was changing my name. He didn’t know that I was transgender so I told him. We talked briefly about it. He wanted to know why I wanted to change my name. I told him I hate my birth name, always have. My middle sister will be going with me to the courthouse. I asked her if she could make it. She wants to know the time and I told her I need to call this Friday to set up a time. I will let her know then. I might use Uber to get there depending on the time. I really would like to go to the Square to get my espresso first so I could catch the bus to get to the courthouse. I can’t walk the few blocks to the street that the buses run. I wish I could but those days are long gone.

I came upstairs and a Lady A song started playing in my head. It’s been playing since yesterday. I put on the song and played the rest of the album. I checked Twitter to find out the score of the Pats game. They are losing by one point. Panthers are a tough team. Last week was a nail biter as the score kept going back and forth. Looks like this week it is going to be the same. I’m not watching it because my ankle is really hurting. I am trying to not take my strong pain pill. I’m not sure if that is going to be possible because I have bone pain.

Listening to the last game of regular season baseball. No score yet. Pats are now losing by 7 in the 4th quarter. Ballgame is going slow. I hate when there are more outs than hits. I asked my mother if she put my extra money in the purse so I can order pizza for supper. She said she wanted it, then argued with me about spending my money. Pisses me off.

I’m really hurting but I am being stubborn and won’t take the strong pain pill. I have been having severe constipation issues so I am trying to lay off so I can go without going into labor. It’s really straining my back to try and go. My nerve injury makes it difficult to get things moving so the stool just stays there without some serious pushing. I hate getting backed up. I have taken fiber pills today so I am hoping to go sometime today with ease. But it’s not an exact science.

Pats have tied the game. Think they will be going to overtime. I hate OT games.

UPDATE, Panthers scored a field goal (3 pts) so my Pats lost. BOOOOO