Tag: complex regional pain syndrome

When you want to sleep but your brain has a million things to think of so you write a blog!

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

When you want to sleep but your brain has a million things to think of so you write a blog!

I had a good appointment with my psychiatrist today. We went back and forth over what might be the cause of my sodium being low or rather me feeling crummy (she too, doesn’t think it is causing me to feel fatigued and crummy, UGH). I am a medical mystery. Well last night I got pissed off because no one was listening and decreased my damn oxcarb! I felt a little better today but I am still so fucking tired from going out. I left early and the fucking bus was late which threw me in a tizzy because I can understand the bus being late once or twice, but all the fucking time now and I have no idea why!! And the T doesn’t fucking care or sends you alerts AFTER the bus comes to the stop taking you to your destination.

Anyway, my psych doesn’t mind decreasing the oxcarb. I knew she wouldn’t. She isn’t a drug pusher like some docs. She wanted to lower my Invega but I am really on the lowest dose and it is an extended release pill so I can’t cut it. I am not taking much Ativan. Other than my breakthrough meds, I am not taking many meds during the day to cause me to be drowsy. I think the espresso carries me through until it wears off and then I crash. The sucky part of all of this is that I am not seeing my therapist and I HATE this part of the feeling crummy deal. I have to cancel Monday because this isn’t an easy fix. I might be able to see him Wed. She wants me to go down to 600/day by the next time I see her. She wants me to lower the dose in like 4 days but I am waiting a week until going down further because I know my body and I don’t want to go through withdrawal. Trust me, I went through it a few times and it isn’t pleasant! I am going to do some adjusting on my part as I will need to take it twice a day. It was a problem before as I wasn’t taking things twice a day and I would always miss my dose so I just took it at night. I was at 600 mgs until about 4 years ago when the hypomania came back and I had to take the 1200 mg. Now that I am taking meds in the morning, it won’t be that big a deal unless my pain makes me miss a dose but I will just take it when I get up because withdrawal sucks!! So I will have plenty of Trileptal for a while.

My pain has been mumbling most of the day today. I thought I was going to flare when I got home as while I was walking, my ankle starting hurting really bad. But nothing bad happened so maybe the AFO was irritating it or something. It is still early in the evening though so pain o’clock hasn’t come yet.

Don’t know if I mentioned this in yesterday’s blog but my barber was telling me his 4 year old son is carrying around my book and asks that it be read to him every day. I thought that was so cute so I bought him Anne Wheaton’s kid’s book called Piggy and Pug. It is a very cute story about adopting pets. I think that will be better suited.

I am so tired. It will be another hour before I can take my night meds. Hope the Ativan in it calms my fricken brain! Nothing worse than thinking a million things and not sleeping. It is going to be really cold as the temp is going to drop during the night. There might be snow this weekend, then will be 50 degrees for a day just to tease us then back to cold. I hope that by Tuesday I am feeling a little better. I don’t know if the 1L restriction is still in place or not. But seeing as I haven’t moved my bowels in a week, that isn’t happening until I shit again. I feel so uncomfortable. I probably will feel better when I go. I thought I was going to go today but it was a false alarm. I was going to take some more Miralax when I came home but once I got into my bed after changing, I didn’t want to go back downstairs and tried the nap thing that failed! I took 3 fiber pills so I am hoping for either colon blow or a big dump followed by colon blow. I’d be happy with a little dump at this point just so I know something is moving!

Another blog by phone: doctors suck when they don’t know what is wrong

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mental illness, mood disorders, physical pain

Once again I am a ping pong ball between my psychiatrist and PCP. He doesn’t think my feeling crummy and fatigue has anything to do with my sodium levels even though I explained to the jerk that when I was 2 points lower I felt sick. Now I feel sicker because the damn sodium is lower! He has exhausted all medical tests to cause this so I am going with my fucking gut this is due to my mood stabilizer lowering my sodium levels causing this. So I am decreasing the dose by 300 mg. I see my psych tomorrow and I hope she won’t fight me on this and just repeat my tests in a week to see if there are changes.

The asshole wanted to discuss this AFTER my appt. No, not happening. Because you know what is after tomorrow? The weekend! Nothing will get fucking done until Monday and I am sick of feeling like crap so this is happening tonight. Fuck him. I want to see my therapist again without it being a big fucking ordeal. It is bad enough I get flares after I see him but to be totally wiped out the day after? No. I am just not letting this happen again. I waited 8 fucking years for the CRPS diagnosis. I am not waiting another week of back and forth to figure this out. I know it is the med. And if I am wrong, then I am wrong and we go from there. I am willing to be unstable to stop feeling like shit. It is my fucking life last I checked!

The pain program called me this morning. I had talked to them Tuesday saying I was sick and didn’t know when I was going to feel better. I guess they felt I already had too many cancellations so they discharged me. Thank god. I didn’t want to go anyway but was forced by the pain doc because I felt they wouldn’t prescribe my pain meds otherwise. I also went because my PT felt it was a good program but the program changed because they were not doing anything she said was available. I just had OT (occupational therapy) and physical therapy. I honestly felt the PT didn’t understand CRPS. I really didn’t. And like the PT I was seeing, this PT’s exercises caused flare ups. And it wasn’t the muscles that I was stretching but my damn foot because I had to exert pressure on. I won’t be going back. Ever.

Today I felt a little better but after I got my haircut, did some shopping, I was fatigued again. I felt like napping but it has been so hard to wake up. I hadn’t eaten anything all day except for 4 cookies with my coffee until my mother made dinner. I didn’t keep my fluids to 1L. Only because I haven’t had a shit in a week. I am so backed up it hurts. I took Miralax today and felt stuff moving but still nothing. Going to take some more fiber pills and hope for the best at this point. Just hope I don’t get colon blow.

Fatigue is killing me!!!

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

Fatigue is killing me!!!

My alarm went off and I took my meds. I checked to see when my delivery would be here. It said in about 40 minutes. I quickly made some coffee and had a few sips when the truck came. The delivery didn’t include a few bottle of Powerade and the buffalo wings I had wanted to make for dinner. UGH. I guess it is ramen noodles or something. After I put everything away and then fixed the Powerade bottles so I could take a bag up to my room, I was exhausted. The weather took out my back so I was working slowly. Now I need a nap.

I emailed my psychiatrist around 8 last night to tell her I was frustrated with feeling like shit and being tired all the time worse than I usually am. I waited for a response and got none. It is now almost noon and still no response, I am ready to page her as I want to decrease my dose of my mood stabilizer even before my blood tests. I am just so fucking tired. Doesn’t help that my foot is going fucking bananas right now. It feels like a grater is grating the top of my foot. It is so sensitive right now.

I got an area of my stomach is killing me. Feels like gas is trapped and won’t go anywhere. Just fucking lovely. I have no idea if it is gas or shit. I don’t care but it better be moving because it hurts. I might take some miralax. That might work but if it doesn’t and works tomorrow, I am screwed because I will be out. I am ready to email my doc and say fuck it, I am decreasing my dose by 300 mg. And watch my sodium levels will be higher. (Don’t know if this will happen but I hope it will be so.)

I think I have to take some Neurontin because my foot is not calming down at all. Neuropathy is such a fun thing (being sarcastic here). It really sucks. But the pain is always so different. Drives me fucking crazy.

I am feeling really depressed and feeling like a nothing. Seems like everyone can do things I can’t. I hate that people can walk their dogs or go for walks period and I am over here struggling just to walk down my hallway and around the kitchen.

My lunatic aunt called to say to look out for my mother. When my mother came home, she called out for me. I asked what, and she told me I had a package. It was from my friend that is not doing so well. I honestly didn’t expect a package from him this year because of all his troubles. It was nice that he sent it to me. Now I got to get around to call him. Anyways, I went downstairs, barefoot, and then went to the kitchen where my ankle pain shot up so high my mother thought I was crying. I could have been the pain was so bad. I waited for it to pass but it didn’t. I opened the package and then put the fruit and nuts away. Then put the box in the recycle pile and went upstairs. I had to stop a few times because of pain.

I had a message from my psychiatrist when I got back to my room. WTF she didn’t understand what I have been telling her. I felt like telling her off but I didn’t. I simply said that if I don’t lower the dose of the medication, I won’t be seeing my pcp tomorrow because I will have no energy! I haven’t had a response. I honestly don’t expect one. It is my body and I will do whatever I want to get it so that it somewhat cooperates the way it is supposed to be and if taking 300 mg less of what I take will do that, so be it. I had a salty lunch of Ramen noodles and crackers. I had bought these crackers that were cheese and peanut butter but the filling was just peanut butter so the crackers must have been cheese crackers, I guess. They were good and salty so I didn’t care. If I am up to it, I might make a turkey Shepard’s pie. I really don’t want peas and pasta. I took some Neurontin to calm down the crazy nerve pain I am having. I have no idea if it is going to knock me out or make me goofy. Either case, I will be taking a nap soon and hope that my damn foot pain doesn’t increase. I am just so wiped out that if I don’t sleep, I don’t think I will be making anything.

Lots of things and crashing after

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

Lots of things and crashing after

I woke up around 5 for some reason that I don’t remember now. I think I was in pain as I remember taking a pain med. I was hoping this was not going to cause me to be in bed all day as I really wanted to change my sheets. I fell back to sleep and hoped for the best.

I woke up with my med alarm blaring. I felt okay. I definitely needed coffee. I was hungry. That was the first time in three weeks I woke feeling hungry. Maybe my sodium was back up. I still feel better but kind of sluggish. I went downstairs after stripping the bed and then used the bathroom. I made breakfast and coffee. My mother wanted a cup so I made her one as well. I found this transgender article and was totally confused by it because it is not how I felt. But I decided to leave it where it was so I could read it later. After I ate, I put the throw in the dryer and then the blanket in the washer. I just had the sheets to do.

I went back upstairs to find my sheets. Before I put them on, I duct taped the corners of the top of my mattress so the damn foam topper wouldn’t go anywhere. I hoped anyway. My back was giving me grief. I had taken a shower before I got upstairs. I had shaved, too. I was sweating by the time I wrestled with the sheets. I was trying to even out the top sheet I didn’t bother to tuck it in. Then I got the comforter and the pillowcase. I put the comforter on and the pillowcase on the pillow. I couldn’t find the extra pillow case for the pillow that goes between my knees. I said fuck it. My back was killing me, I was wiped out, I felt like I was going to pass out and I did. I slept for three fricken hours. I guess the sodium isn’t as high as it should be. I know it is getting there as I am kind of feeling better. The big test is that I am getting my groceries tomorrow. If I survive that without sleeping for the day, I guess I am doing better. If I sleep all day, then I am still fatigued from the low sodium.

I read this article https://www.nytimes.com/2018/11/24/opinion/sunday/vaginoplasty-transgender-medicine.html. And it was a MTF. I honestly have not come across too many trans that feel this way. I certainly have never felt this way but I am not going to have phalloplasty. It is a complex surgery and I just do not want to go through with it. I just want to be flat chested and grow a beard. The things raised in this article scare me because I don’t ever want my hormones to be in jeopardy. I know that losing my breasts has to be dealt with. I have thought about it so many times. I mean, I am sort of attached to them. I wish they never were formed so I didn’t feel that way but now that they are sort of shrinking slowly, I am glad. It was a huge part of my dysphoria to have breasts when I didn’t want them. I know eventually, I will have to have top surgery and getting a good surgeon is key because I have heard horror surgeries where the surgeon doesn’t care and just does a bad job. Granted this was just in the UK, but I am hoping to find one in the Boston area that is considerate and doesn’t cause nerve damage or anything. That is further down the road as I am not there yet. I don’t know if I can talk about this with my therapist or not. He doesn’t seem to know a lot about transgender and I am kind of pissed because on the website I found him at, said that he did. I am not sure if I will have to find another therapist to deal with the dysphoria or not.

This female is having doubts about getting surgery to have a vagina implanted. I don’t understand why she would go through something like that if it is going to cause her more emotional pain than what she is already in. And I still cannot believe a surgeon would do it when there are doubts. I am not saying my transition has made me bone fide happy, but it has relieved a lot of the tension I was feeling not going through the transition and having to wait so much from the LGBT clinic and then I met my doctor and she is all like when do you want to start. Like seriously, in one visit, I am on hormones. I understand the LGBT taking things slow and working things out but I have known the last ten fricken years, maybe more than that, that I am NOT a fucking female. I am a fucking male. I hate getting misgendered! It really drives me crazy and Microsoft doesn’t recognize misgendered. How fucking lovely.

I have my shot this week. I am excited because I get to do the selfies and post a little bit about changes. Honestly, other than thicker leg hair, there hasn’t been much since last week. I keep getting complimented on the facial changes but I don’t see them week to week. Sure from day 1 to now I do but I think if I lose weight, it will be more prominent. I think I have lost some weight since I haven’t been eating regularly with the whole sodium thing. I really have just been sleeping a heck of a lot.

I see my psychiatrist this week. I am glad because I miss seeing her. I hate these monthly meetings but she is always a page or email away if I really need her. I don’t know what they are going to do about my mood stabilizer. I see my pcp Wed to get my blood redrawn to check levels. Then go from there. I really hate that I have to taper my drug but I don’t know if it is just to taper to a lower dose or off the medication entirely. And I am starting to feel that woozy feeling again, which means I am going to crash soon. I am over a 1,000 words. So I guess that is good for the day. God I can’t wait till this is resolved!