Tag: chronic illness

Flares and a fucking cold January storm

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

Flares and a fucking cold January storm

So Friday night, hell began for me. I was texting a friend for a bit, just shooting the shit. Around 2020, it felt like my high ankle bone was going to snap. I thought I was imagining things but the pain got worse. I didn’t take anything as I thought I was imagining things and then, boom, bones in my ankle and foot were being crushed so bad all I could do was laugh. This was around 2100, a half hour or so later. I took some meds. I couldn’t believe I wasn’t tired as I had a hard time getting to sleep. I went to bed at 6 Friday morning and it was now 9 pm and I was just like WTF. I knew there was a storm coming. I literally felt it in my bones! The pain got worse as the night went on. Then the morning came and I just passed out from exhaustion. I had taken a whole lot of bunch of gabapentin, pain meds, and Ativan (only 2 though) to get me through the night. Saturday, I was exhausted and slept most of the day. I don’t even remember what time I woke up. But when I was awake, pain was still there. I felt like my foot was being split in half and then when the night hours came around, I was in agony again. It took a fucking lot not to end my life this weekend because I was hurting so much. I was using the walker to get around as I just needed the support more than anything.

Yesterday was similar, though not as bad. The temps were down to as low as 2 degrees F. I wasn’t hot in my room as it was so cold out. My voice has been up and down all weekend. My mother finally said something yesterday. She first asked me if I had the window open in my room. No. Then she asked if I had my fan on. I said no. Then she said it is the cold messing with your voice. HAHAHAHA if only. Today it is not so irritated. I kept having to clear my throat as there just felt like there was stuff there and I couldn’t cough it up. Much better today though. I asked my sister if I sounded different and she said not really. I did an experiment on FB where I did a video and just talked for a bit to see if those that knew me thought my voice was different. A dear friend said that I sounded like Morgan Freeman, and I was like NO I DO NOT! LOL. She was happy to see the changes and stuff so that made me happy. She is a very good friend and glad to be on this journey with me.

Tomorrow I got to call the TG doc’s office because I thought I had the appointment with her Friday but in the patient website thingy, it says the 1st of Feb. Either I put it in wrong or they changed it without telling me. I am going to be pissed if this happened because WTF. I would have showed up Friday just to be told to go home?? Not cool when you have difficulty getting to appointments as it is. So we’ll see who is wrong.

I have my shot this week so I will be taking pics. I think my fat face is getting bigger because I am fat. It had thinned out but either the way I am taking them or the lighting is making me look like I have fat rolls on my face, which I do not like. I hate doing the selfies. I was mad one night because I was in pain and just took like 5 selfies with different faces and posted it on IG with some bitchy thing. I couldn’t help it because I was so miserable that night.

I am so glad I didn’t see my therapist today because there is ice everywhere. It snowed then it turned to sleet/rain and froze because the temp dropped so suddenly. I haven’t taken a shower in like a week. Last week I had so many doctor’s appointments that it was ridiculous. I had something every day. I got a new brace for my right foot/ankle which is a bitch to lace up. It is a good kind though, probably better than Walgreens/CVS brand because the stability things can come out. I used it on Friday and added 20 minutes to my get ready time. Thing is going to be so great during PT as the PT is going to have to help me take it on/off as I cannot bend or move to see where the laces should be laced up. I shaved and kind of buzzed my head, and totally fucked up the back. Well the whole thing is messed up as I couldn’t get the trimmer to work right so some places got buzzed and other places didn’t. My barber is good and will see me tomorrow to fix it. I will pay him on Wed. Or make him his favorite dish that he loves. His wife loves it too so I am glad I get to show off my cooking skills. I miss cooking so much. I have been wanting to bake these stupid chocolate chip cookies that I bought special ingredient for and because of fucking pain/flares, I haven’t been able to make it. I think I need more breakthrough meds during the day to help me get through the fucking day or the ER dose needs to be increased. I have had it and with winter just showing up, it can only be a bad thing in the coming months. I am going to email my chickenshit PCP and tell him this because I am going to keep having nights where I am going to bed at 4-6/7 in the morning! I don’t see him again till March and winter will be over by then or close to it. I am just worried what February will bring.

Night of horrible, excruciating, pain #CRPS

by Midnight Demon, posted in bipolar, Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mood disorders, painsomnia

These are my posts I have made on social media tonight describing the infuriating pain of complex regional pain syndrome or CRPS (formerly known as RSD). One of the paragraphs is to my wonderful, understanding psychiatrist which explains the vein popping of a flare. I don’t get the normal discoloration of CRPS. I get the swelling and pain and allodynia. This is my 2nd night of not sleeping. I’ve maxed out on meds except one, ativan which I shall take shortly. Hopefully it relaxes me enough that I can lay down and sleep. I really hate nights like this but a storm is coming so will be hurting all weekend. Barometric pressure has been so up and down, I can’t keep track of it anymore. It is painful when it like this. Not only do I flare but my joints stiffen and spine aches from arthritis. No one understands the battle so I try and be as descriptive as possible so some understanding can be understood.

Was just sitting in my bed leaning back on my headboard as ankle bone pain course through every bone in my ankle. Then all of a sudden went down through all my foot bones and I started laughing. This has never happened before. One or the other but never both and I am so deliriously tired I don’t care and so I am laughing because of the pain. I’ve used more pain med this month so I got to ration what I have left. Hahahaha oh lordy. Gonna be a fun night and a storm is coming. Wonder what levels of pain that will bring??

Fucking pain. Right where it feels like a knife gutting me up my foot, veins are popping up in a group. Foot still being crushed by unknown entity. Bones hurting severely. & it is midnight. 1200 mg gaba taken. Another hour maybe a BT med. After that, who knows…

haha CRPS is driving me crazy tonight. Every bone hurt in ankle and foot. Then I have a stabbing, gutting feeling where my veins are all grouped together popping like crazy. All blue from being together. Fun fucking syndrome nothing is working. Just taking the rest of the bottle of gaba and call it a night.

Losing the battle with pain. Feel like I want to pass out and pain laughs, and goes up more or hits another area of foot or ankle or both. Nuts. Suicidal ankle pain has started. Fuck. No sleep tonight after no sleep last night. Fuck.
Pain is off its kilter tonight. 2nd night in a row. Nothing is working. Haven’t taken 2nd dose of ativan yet only because I’ve taken high doses of gabapentin. Foot is being crushed. Malleolus is being hammered. And the suicidal ankle pain has started. Veins have converged so I now have a blue tint to my skin because they are popping up. You can see every vein in my foot as to how flared it is. Haha next time i need blood drawn they can use my foot. Haha ouch.

Sunday Blog and a Pats Win 13 Jan 19

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

Sunday Blog and a Pats Win 13 Jan 19

I woke up around 1300. I thought I took my morning meds when the alarm went off but I didn’t. I took them when I got up. I wasn’t hungover like I thought I would be as I woke up a few times during the night. I decided to do my hair and then shower. Well, it is all uneven in places. I am going to try and have my cousin fix it. Which means I need to call him and talk to him about bullshit things he talks about. Then be in his smoky apartment because he is a chain smoker. But I don’t have the money to see my barber until next week. Hopefully it will grow as I won’t touch it except for the sides and back where I have been shaving.

After I did that, I made something to eat and turned on the Pats game. They were leading already and had scored while I was showering (I had checked the score before going downstairs). I made the steaks, which were not that tender. I didn’t realize the A1 sauce I had was expired 10 years ago so it was not good. I had two cups of coffee and after I had my steaks, a piece of chocolate cake. The frosting was very thick so I just mostly had the cake with a little bit of frosting. It was so good.

I tried to figure out the bus schedule for tomorrow but I couldn’t retrieve the morning schedule on my phone. I only got the afternoon and only like 3 times in the afternoon. I had no idea what I was doing wrong and I couldn’t get the starting point from the station, which annoyed me. I just printed it out when I got to my room. I got to be up around 0830, well, least set the alarm for that time to wake me up and maybe have breakfast. I will be going another way so I hope to make breakfast of some kind. I hate morning appointments. I like afternoon as I don’t have to rush so much.

When I came back to my room, I did my meds for the week. Because the new pill is in blister packs, it was a bitch getting them out of the package. I don’t understand why my doc just didn’t write for x amount of pills and go from there. Such a pain. I guess it would be helpful if it was the right starter pack but it is the wrong one so what difference does it make?

I am hoping to go to the grocery store tomorrow to buy more iced coffee. I have maybe half a bottle left. I also need more half and half. Might see if I can find that steak that I bought that was so damn good. If not, maybe get some popcorn shrimp or a pot pie. Depends on my mood. Right now my foot is feeling like it is being split in half so it is anyone’s guess if I sleep tonight. I moved the body pillow so that I am not sleeping on my damn shoulder. My head is causing it considerable amount of pain.

I see my PCP tomorrow. I hope he can figure out what needs to be done with my right foot. I hate that my foot rolls while walking in the sneaker, causing my ankle to hurt where I had sprained it. I don’t want to go back to PT if I don’t have to. I just need something supportive and doesn’t aggravate my heel pain. I see my orthotic person Thursday so I hope he can come up with something. If not, I will end up getting something at Walgreens or CVS, whichever is cheaper.

Feeling horrible and slept all day

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

Feeling horrible and slept all day

I woke up around med time. My alarm went off at 8 instead of 9. Something is wrong with the app because it is not going off continuously to annoy me to get up. Just has the little sound and then nothing for the next 15 minutes or so. I don’t know what to do and am afraid of uninstall/reinstall thing. I would hate to input all my meds again. There are really just three that need alarms the rest are just as needed, when I need to keep track of when I last took them. I need to get in touch with the developer and see if they have an advice.

I took my meds and then used the bathroom but forgot to brush my teeth. I was kind of in a weird state where I really had no idea what I was doing there. I went back to bed, thinking I would sleep for a few hours and then I would get up to eat and make cookies. Did not happen. I woke up around 2pm after a weird dream about the Obamas and the White House. I don’t remember more than that. I used the bathroom and then brushed my teeth. I made some graham cracker cereal and found we were out of milk. That meant no cookies. I texted my sister to pick some up on her way home. My mother called to keep me in the kitchen until my niece came home so I could let her in the house.

I had coffee but it didn’t help. I went back to my room and succumbed to the sleepies. I thought I would sleep a couple hours but I slept until my night med time. Fuck. I wanted to order some steak tips but I think laying down so soon after eating the cereal messed up my stomach. Looks like the cereal is the only thing I am going to eat today. I feel horrible that I slept all day again today. Seems that on days I don’t have anything to do, like go to an appointment or something, I sleep. Granted the day after I have therapy, I am tired because I am usually up all night, but this time I wasn’t. I slept through most of the night at a decent hour. I just can’t force myself to stay up. I just feel like sleeping is better, but I am wondering how much of it has to do with depression and how much has to do with not sleeping and being in pain. I sent an email to my psych that the CRPS has spread to my whole foot. I am not happy about it. If you compare my left and right, the left is more swollen than the right and there is some redness at the arch. I hate this! I thought it was just because of the flare I had Monday but now doesn’t seem to be the case as my foot is still sensitive.

I am not liking all this sleeping. I don’t want to get in the habit of sleeping all day because I have the risk of being up all night and that is a bad thing for triggering my bipolar. I already had a few being up 15+ hours. I haven’t made it to 24 and I hope I never do. Closest I have ever come is 22 straight hours. I hate feeling terrible and after I had used the bathroom and went back to my room, and nearly fell because I almost lost my balance taking my slippers off, my foot then exploded in pain. Now I am not sure I am going to sleep again and I am pissed I woke up. Just let me fall into the death nap.

I have been worried about my eating, or lack thereof. I just did some calculation to figure out how many I need just to maintain my weight. But the problem lies with being male or female. If I am a male, it is over 1700. If I am a female it is 1600. I am a male but I am transgender and currently still in a female body so I am all fucking confused. I feel like I should go with the male because fuck, I am a male but yet in my medical records I am female. Fuck. I just am so fucking confused about this shit. I know it is a technical thing, and we are just talking 100 calories. That could be a protein bar, give or take. I know I have not been eating anything close to 1000 calories the last few weeks. Yet I haven’t lost that much weight. I maybe lost 1 pound or so in a week. And I have lost 8 pounds when I wasn’t eating anything, just a thing of ramen noodles for the day. The website I was at said that fasting like I have been aka not eating, can lead to gallstones. Great. Always wanted those, NOT. It is because I am breaking down muscle instead of fat. So I am losing muscle instead of fat. Lovely. I keep telling my doctors this but do they fucking listen?? No. do they order tests to see if my vitamins are okay and shit like that? No. so I could be malnourished and they don’t care about it. I hate taking vitamins and they aren’t cheap. I might take one here and there. But after a while, the gummy gets hard because the bottle was opened and air made them dry. I like gummies better than pills. But I am not going to buy a shit load of vitamins. I had the B vitamins that were sublingual. Those were good but then I stopped because I forgot to take them, and because they were under the tongue, you couldn’t put them in a med box. Plus they had red coloring that came off so if they stayed on your hand or some place, the red wore off. I hated this. I have no idea where I put them. I know I had a bottle on my bureau as I had two. But no idea where they are now. I wish there was a medical person I could talk to about this, someone that fucking cared about this shit and didn’t pass me off because they didn’t have a clue. I don’t even know who to see. Then I think of the trouble to figure it out and I don’t want to do anything. Add in the depression and nothing gets done about it. Fun. So I want to lose weight but no clue how to do it and yet I am barely eating because my appetite is fucked up. Just hope for my birthday, I have my pizza. Hope I eat more than one slice.