Tag: disability

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.

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.

ankle and foot flares so my mood sucks

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

Ankle and foot flares so my mood sucks

I woke up around 0430 because I had to pee. I struggled with whether or not to go back to sleep because I knew if I did, I would have a hard time waking up when my alarm went off at 7. I just laid in bed. I had taken some pain meds as my ankle was being a jerk but it wasn’t too bad. I finally gave up resting around 645 and got dressed to catch the 701 bus to the Square. I brought a light bag with me as I didn’t know if my messenger bag would be acceptable in the courthouse.

On the way to the courthouse, I had my bag on my foot. After a few stops, It didn’t like the bag and I was in a lot of pain. Great. The pain got worse as I got off at my stop and walked to the courthouse. I had a few anxiety attacks from the pain. I was literally shaking and having palpitations. I went to where I needed to go at the courthouse and paid my fee. The woman said it would take four weeks to process. Damn. I thought it was quicker than that. She said she will call me when it was time for me to come back.

I carefully went to the train station that was down the street, about half a block. I was hurting pretty bad and had no idea how I was going to get home. Luckily, I didn’t have to wait too long for the train and bus home. I was limping as I got home and my ankle gave out on me as I walked up the stairs. I wasn’t going to do anything the rest of the day.

It was hot and humid today so I was sweating by the time I got up to my room. I must have been on my bed for about a half hour when my ankle bone flared up. I feel so depressed. I don’t know if I should keep my PT appt tomorrow or not. Going down or up the stairs is pure torture. I feel so hopeless right now. I just want to go under my covers and stay there permanently. To make me feel “better”, my mother said that she is not going to call me G. She is going to keep calling me my birth name. So much for her being okay with my name change. I just want to give up. I feel so weighed down and in so much physical pain that it’s like I am being crushed on all sides. Just kill me now. Why prolong the inevitable?

Next week I see my PCP and I am going to beg him to put me on a long acting pain med because every 5-6 hours sucks and if I don’t take it around the clock, I wake up in pain or I hurt worse for missing a dose. I’m done being a nice guy. He doesn’t, I will end my life. I don’t see what other choice there is. I can’t “live” like this anymore. My meds aren’t being totally effective anymore. I know I will NEVER be 100% pain free, but it has been so damn long since I was at say a 3 on a scale of 1-10.

I called the bitch coordinator that I met with on Friday to tell her I wasn’t interested in her group anymore. Her loss.