Category: blogging

the many pains of CRPS

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

The many pains of CRPS, Complex Regional Pain Syndrome

I woke up around 5. I checked to see if my check was deposited and it was so I paid a few bills. I am going to be dreading what my account is going to look like tomorrow. I think I’m going to have around $30 for the month. I had my mother save $50 for me towards my name change. She doesn’t know that, yet. She will in time.

I got hungry around 0630 so I made an egg burrito with lots of cheese. Flour tortillas seem to be my favorite thing right now. After breakfast, I still had an hour before I had to leave the house to meet up with her for coffee. It was cool so I shut the AC off and just had the ceiling fan on. I decided to nap. I didn’t put the blankets on. The air from the ceiling fan was bothering my CRPS foot. So I moved it to go under the blanket. WRONG MOVE! OMG Pain!! It felt like my ankle was being ripped apart. I swore and cussed and clutched my pillow. Fucking A. I couldn’t move as I was in so much pain. It settled down after lying still for about 15 minutes. Then I lifted the blankets with my right foot and snuck my left foot under. No pain then. I fell asleep until my alarm clock went off. I didn’t want to get up.

I got dressed and took a strong pain pill before leaving my room. I got to the bus stop and waited. Pain levels were fluctuating but tolerable. I had bought a gel cushion for the sole of my foot and put it on the AFO. It was killing me by the time I got to Starbucks. So I wasted $7. I couldn’t return it because I used it. I was disappointed. I hoped the burning at the bottom of my foot would pass and it did. My friend came and we had coffee. We talked for about three hours. It was good. Then my friend had to get her daughter so she left. I stayed to write a little bit but played with my phone instead. I then went to the bus stop to go home. My pain was manageable. I was looking forward to making a turkey roll up with cranberry sauce.

I got off the bus and started walking home. I got to within a block of my house and my ankle gave out on me, again. WTF. Two days in a row! I am not happy. I came home, made myself lunch and then took my pain meds. I then took a nap as I was exhausted. I had put my feet under the blanket so the fan wouldn’t bother them. I got hot and woke up after a couple hours. My ankle is still sore.

My groceries are coming sometime after 2000. I had picked a late time because I went out and wasn’t sure what time I would be home. I didn’t think it would be that late but whatever. I hope the pain meds have a chance to work by then. I am going to take another strong pain pill. I can’t take my regular one for another couple of hours.

Last night I got a message from someone who was looking for a guess blog post. I had given her my blog address and she got back to me saying my blog was about “BPD”. I have no idea where she got that from as I don’t have that disorder. I got offended and told her not to contact me anymore. Whether she thought the pain I write about is emotional pain and not physical, I don’t know. She wasn’t a mental health professional as far as I know. I hate it when people diagnose someone and don’t have the credentials. That is like me telling someone they have the flu because they have an earache. Dumbasses.

thought today would be a low pain day, wrong!

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

Thought today would be a low pain day, wrong!

I slept through the night for the first time in months. I woke up around 0630 just to use the bathroom. I wasn’t in that much pain. I was hungry though as all I had to eat yesterday was a turkey and cheese roll up. I couldn’t go back to sleep so I went out after I paid a few bills and ordered my groceries.

I wanted to leave after I had my breakfast but I also wanted some more turkey breast as I used the last of it yesterday. I had a few minutes before the next bus so went to the grocery store. I thought I said turkey breast but when I rang it up, it said ham. I had to go back to the deli counter. By then I had missed the bus so I got another bus to take me down the street to take me home.

I had some scripts at Walgreens to pick up and I also wanted to get a foot cushion for my AFO. My foot was starting to hurt but it wasn’t too bad. As soon as I got to the street and a few steps beyond Walgreens, my ankle gave out. I was in severe pain. Fuck. I had a block to walk before I reached home. I was not happy. I basically tried walking without putting weight on my ankle. It was tough. I had taken my pain meds before I left the house so I needed to take the strong pain meds to settle down. Now I am bedridden the rest of the day. I just hurt so bad.

I had to restart my laptop as it was slow and the screen was getting glitchy. I need to have it replaced. I don’t know if my laptop is slow because of it being old or what. When I get the screen replace, I’ll have my friend take a look. Maybe I need more RAM or something. It seems to be fine now but that can change.

I finally finished the antibiotics today. I hate taking meds three times a day. It sucks! My gums still hurt and are still swollen. I am finally able to eat on that side without too much trouble though with the swelling, it always feels like there is something stuck there.

I was reading an article on CRPS that was written in Australia. They call this the “suicide disease” because it is so painful. I believe it. More than a few times, I have thought and planned to end my life because of the pain. I seriously am thinking of getting my medical records from my neuro so see what she wrote for yesterday’s visit. It’s kind of a blur to me and it’s still not clear if I have CRPS or she was diagnosing me with small fiber neuropathy. I was so sleepy that I just didn’t have her full attention. I do know it pissed me off that she didn’t exam my foot/ankle because I had the damn AFO on. Jerk. I guess I need to wait until Oct to get a clear cut answer, I hope. All this rift raft is driving me crazy. And in the meantime, I am in horrendous pain that makes me want to die and feel useless.

a day of traveling for nothing

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

A day of traveling for nothing

I got a few hours sleep. Pain kept me up most of the night. There was nothing I could do about it. The more I stressed about not waking up around 7, the worst my sleep got. I couldn’t settle down. I had my mother wake me around 7 but I didn’t want to budge so slept till my alarm went off. I had wanted to make breakfast and coffee but I only made coffee. Around 8, I left the house.

The green line that I had to take was having track diversions so I had to take a bus to get to where I was going. I thought if I took another bus, I would miss it but that didn’t turn out to be the case. It took me around 2 hours to get to my neurologist’s office. It was very humid and hot. I hated it. I mostly slept on the bus and trains. My pain was bad so when I got to the office, I took some pain meds.

My neurologist is never on time. I must have met with her for at least twenty minutes. Even though she said that I had complex regional pain syndrome, she kept on calling it small nerve fiber neuropathy. I was so tired I didn’t get mad until I left the office. She had no new hope for me. I told her to send her notes in triplicate to my PCP so he would stop sending me to new docs. She said I was a trooper and something else. Then she gave me an appt in a year’s time. Appointment was over with. I was stunned. I was too disgusted to think. I had spent two hours to see this doc only for her to basically tell me nothing and see you in a year. She didn’t even exam my injured foot because it was in the AFO. Asshole. I don’t think I will go back to seeing her. But the thing is, my PCP’s office is reluctant to prescribe Neurontin so I need to see her so I can get that script. Fucking ridiculous. I am so fed up. I swear if the new neuro treats me this way as well, I am going to go nuts.

I walked back to the station and waited for the shuttle bus to bring me to the trains. By that point, my foot was berserk. I was in more pain than ever. I thought about going to Starbucks for something to eat but knew I couldn’t walk there. I just waited for the bus home when I got to the Square, 2 hours later.

I had something to eat when I came home. My foot pain was killing me. I just want to eat and then take a nap. I also took more pain meds. I put my phone on do not disturb and slept. I am glad I did because I had two phone calls that I missed. I would have been pissed if they woke me up. Now I just took my night meds and something to move my bowels. I haven’t gone since last week.

Eclipse 2017

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

Eclipse 2017

My sister was in the path of the eclipse as she was down in South Carolina. She got really cool photos, which were similar to those on Facebook and Twitter. I was in Starbucks and didn’t care much for it as there was overcast. I saw some guy in the foyer outside with the special glasses and did see things go dark for a little bit and then bright again. I stayed where I was inside the store.

I wrote in my journal as I was having my espresso. I didn’t leave as late as I wanted to as I got up around noon time. I caught the 1300 bus, which had some kind of idling or brake problem as it was making awful noises at each stop or red light. I had bumped into a family member while waiting for the bus. They are still contemplating therapy but is scared of being put in the hospital for “being crazy”. As much as I have tried to reassure this person that will not happen unless they are a threat to themselves or others, I still am not getting through. It hurts me so bad to see them suffering so much.

After I couldn’t write anymore in my journal and saw the loads of pics of the eclipse on Facebook and those my sister sent me, it was time to catch the train to see my therapist. He didn’t pick his nails as much today and was attentive to what I was saying. It kind of freaked me out a little because I was getting used to him being silent all the time. In the beginning of session, I had to hold back laughter as he was wearing cranberry pants. It looked totally ridiculous but whatever. Who am I to judge?

My ankle was getting sore on the way home. I caught the first train that came to the station and luckily, the bus had just pulled up. I didn’t have to wait for the 1730 one. I was looking forward to chicken cutlets but when I came home, I smelled stir fry. I was totally disappointed. I was a sweating mess and had to change. I made a dish and had supper. Then I took a much needed shower. I had wet myself and needed new underwear. I drank a lot of water when I came home as I was really thirsty and didn’t feel like making iced tea like I usually do. I’ll probably have to use the bathroom soon as water just goes right through me for some reason.

After the shower, my ankle was cramping on me while I was drying off. I was due my next dose of pain meds so I took them when I came to my room. Now an hour later, my ankle bone is being tortured. I fucking hate this shit. I need to be up in 12 hours, I’ll be lucky to get to sleep tonight. I’m glad I took a shower so I don’t need to in the morning as I have a feeling it is going to be rushed. I need to catch the bus in the opposite direction I usually take as I got to go to another train station to see my neurologist. It’s an appointment that I need to go to only for her to email my docs about her diagnosis of CRPS. I want her to do it in triplicate for my PCP so I don’t have to go to anymore new docs. I am just seeing the specialist and hopefully he won’t recommend me seeing anyone else because I’ve had it with the profession, except for my psychiatrist of course. I took a strong pain pill. Lord only knows when I will have a bowel movement. I thought it was going to be today but nothing so far. I really hope I don’t get hit tomorrow while I am out and about. I am about an hour and half away from home, 45 mins of which I am on a train the whole time. Just makes me nervous because my bowels can be unpredictable at times and when I need to go, I need to go NOW, there is no holding it in because of my nerve injury. I haven’t taken stuff to go because I am out and about. It is going to suck so bad when I do go. I am not looking forward to it.