Author: Midnight Demon

Saturday Blog 02042022

I can’t today. I have been waking up in pain since midnight with my shoulder. I had to take my BT meds to get a few hours sleep. Soon as the meds wore off, I was in pain again. I don’t know why it flared up. Then when I woke up and after I had my coffee, my CRPS flared up. Started with my big toe hurting like crazy and then spread up my foot to my ankle. It hasn’t gone up to my shin yet. I am hoping the meds cut it off before it does. My ankle felt swollen so I looked at it and boy it is. Veins are popping too so that is fun and why that area of my ankle hurts.

I have so much stuff that I wanted to get done today but pain is preventing that from happening. I was able to make a document of the lentil recipe I want to make. I bought the French green lentils for the recipe. I just need to go to Trader Joe’s and get their Dijon mustard. I also need to get some herbs.

I am so tired. I tried napping but ankle pain is too intense. I need to shower and brush my teeth. My mouth feels all ick. I hope my SNAP money comes tomorrow as I only have one bottle of Gatorade left. Pollen count is high today so my allergies are out of control. I will need to take another Allegra pill today.

Both my neuro and pcp wants me to see a pain doc to see what they can do about my pain levels and if my meds need to be adjusted. I just saw them maybe a year ago and all they did was give me Narcan and tell me not to take Ativan with my pain meds (I have taken it together, and guess what I am still alive). I think they mostly saw me as a psychiatric case as they put BPD in my diagnosis. Who does that?? It really pissed me off.

My therapist said “we’ll talk about it on Mon” when I asked her for a letter of support for top surgery. I hope this doesn’t mean she won’t do it. I will just have my psychiatrist do it as he has offered. He sent the letter when I got my hysterectomy so I figure I would ask my therapist for this one. I was going to ask my former psych but my therapist got bent out of shape when I told her. I am going to be pissed if she says no now that I am asking her for one.

The CRPS pain has spread up my leg. My lower leg bones and muscles are hurting me big time. I have no idea if I can stand. I am not even going to attempt it because my ankle is swollen. My mother called to say she made asparagus and eggs again. I am still full from the Chinese food but am feeling nauseous from the pain so don’t want to eat anything right now. This flare is the worst it has been in two years. I just took a double dose of BT meds again. I am going to have to take Miralax so I can go crap.

I am so damn tired. I keep getting stabbing pains in my ankle near the ankle bone, the malleolus. I forget if it is medial or lateral. It is the one outside so I think it is lateral. I want to shower as my head is greasy feeling. I haven’t showered since last Mon or Tues. I trimmed my beard on Wed. I just have stubble now. I really want to shave it clean off. But I won’t be able to stand too long. Not today anyways. I don’t know why I am flared up. The temps have been relatively stable the past few days, though at night the temp drops as the heat turns on and it is cold in the house. I at least trimmed my nails as they were getting long. I type better with short nails. I do need to brush my teeth. I am waiting for the stabbing pains to settle down a bit. I know that if I stand and then rest I am going to be in worse pain than I am in now. That is how the pain goes with CRPS. I am going to ask my new pcp if she would message the pain doc to see if something can be done for the pain. Going to tell her the last time I met with her she didn’t want to do a damn thing because I feel she thought I was a psych case and too much at risk. She didn’t say it but she included one of my psych diagnoses in her notes. Why would she do so if she didn’t think I was a psych case?

I am glad I took an Ativan because the pain just jumped. OMG feels like someone is trying to scoop out the malleolus bone. This pain is very bad. It has been hours now and I am glad meds are working to keep my pain levels down. I had something to eat. I brushed my teeth. Now I am going to go to bed and hopefully sleep all night. I emptied my bladder so I shouldn’t wake up again to empty it. CRPS pain is no fucking joke. My bones still hurt but not as much as they did. Thank god for my BT meds and gabapentin.

Trans visibility day

Today is trans visibility day. I got the urge to call the plastic surgery dept for an appointment for top surgery. I called three different numbers to finally connect with someone. I now have an appointment in July with the chief of plastics. I asked my therapist for a letter of support and she said we would talk about this on Mon. WTF. I am so anxious now.

I read some stuff about nipple grafts. I still haven’t decided if I want it or not. I just want the breast tissue gone. But if the surgeon wants to do a nipple graft than I will have it as some surgeons prefer to do them. I will have drains. The appointment is in July so I have until then to work on my weight a bit.

I am tired today. I didn’t sleep well last night. I read most of the night because I couldn’t sleep and I didn’t want to turn on the laptop. I tried to stay off my phone as much as possible. I didn’t have that much messages so that was good. When I did sleep, I was up every hour. I was either thirsty or I had to go pee. I was also having weird dreams that kept me up.

My biggest fear right now is that my therapist is going to tell me I am too depressed for surgery. If she won’t write the letter, I will have my psychiatrist do it. He volunteered to do it when I told him I got the referral.

My uro NP reached out to be about the sample catheters I had requested. I have an appointment with her tomorrow afternoon. Bladder pain has settled down some. Tomorrow I stop taking 2 of the 3 uro meds for the test I am having done next week. It will be with the old urologist that creeps me out. Gonna be fun being exposed with him. I just hope he doesn’t have to exam me at all. The test is to see if the meds I take are causing my bladder to be atonic. I can still void. I just don’t empty all the time or it takes me a long time to empty because the stream is fickle. Cathing just makes things easier as I have to cath after I void anyway to make sure the bladder is empty.

I am tired today. I was supposed to pick up my meds but never did. My niece said she would but she disappeared when she said she would get them. I haven’t heard from her since she left. My brother In law picked them up for me. I am grateful he goes for me. I am just so damn depressed and psychache is kind of high. My ankle/foot pain is a 4. I realized this morning I didn’t take my morning meds yesterday so that was why I had heartburn all day and was in serious pain all day. I didn’t take my extended release pain med so I was in pain. Yesterday was a very bad pain day and now I know why. Ugh I hate when I miss taking my meds. I could have sworn I took them. But the box was full of meds so obviously I didn’t. Now I know the med is doing something. Today the pain is low but still uncomfortable. I have been taking ibuprofen all day because my shoulder has been bothering me. I must have pulled a muscle when I reached behind my back. I used the TENS unit on it and the trapezius muscle on my neck to help ease the pain and tension there. It helped. It was kind of scary though because as I had the pad on my bicep it was moving my fingers as well with each pulse. It was definitely on a nerve.

I have a dentist appointment next week. I am not looking forward to it. I might cancel it because I have been really bad about brushing my teeth. I didn’t brush yesterday or today, yet. I just am too lazy. One of my friend on Twitter told me about toothbrushes where you just chew them. That would make me sick. I don’t really like the taste of toothpaste anyway. She was trying to be helpful in getting me to brush on days I don’t feel like it.

A friend on twitter has this rage Wednesday every week. I usually don’t participate because nothing (other than pain) bothers me. Today I was thinking how it has been 10 years since I’ve been permanently disabled and I am still in horrific pain. And now that pain is spreading up my leg, which has made me very depressed.

I bought a TENS unit. Found out you have to have two pad plugged in not one. Well I had it on the highest setting because I didn’t know what I was doing and shocked the hell out of my calf muscles. I put it on a lower setting and had it on for a few minutes. But the damage to my left was enough to activate CRPS in my ankle/foot so now I am in agony. I took a pain med and slept for an hour before my bladder woke me up.

It took 8 years to be diagnosed and 9 years to be on adequate pain meds. I am still undertreated with my pain. I think I should be on a higher dose of pain meds but no one else agrees with me. I’ve stopped complaining because I don’t want them to stop prescribing me pain meds. I don’t have too much side effects. Constipation is a big one but I am on other meds that that cause constipation too. I take 3 meds for it. One is not really a med but a supplement. I have to stay on top of it because I’ve learned that if I don’t, I don’t go for days to week.

I didn’t have a good sleep. I was up most of the night again. Seems every other night I have insomnia. I am glad I don’t have anything planned today. I wanted to clear off my bed and change my sheets but that might be tomorrow. I am cold and tired. I just want to be under the covers. I don’t care if I sleep or not. I just want to be warm.

My mother’s sugar dropped so I had to make her lunch. I made sure she was ok before I went upstairs. Her back hurts and she was doing laundry. A good combo for sugar to drop. She is ok now. I am glad she called me.

Tonight we will be celebrating my bro in law’s birthday. Should be fun. He usually has a rum cake. It is so good. I am looking forward to it.