Category Archives: disability

Foot is driving me nutso!!

I’ve been trying to sleep since 2100. My mother wasn’t up in her room yet. I called to see if she was ok as with the AC on, I can’t hear things. She was okay. Her sugars had stabilized.

I got a blog that I read and wished I didn’t. It was about the lesbian protests or something like that in London during the Pride parade. What gets me is that anytime transgender is mentioned, it is almost always having to do with transwomen. I know I cannot be the only transman in the world. I know one came out in the Navy. I know there is another fellow in Oregon. We talk occasionally. We can’t be the only ones out there. So why isn’t it out there?? I just feel alone and invisible.

Then I started talking about suicide and someone tried guilt tripping me. I call it what it is and they say it is on me. Really? I will be fucking dead. How will I know what will happen to my family?? Am I supposed to be a ghost or something? Pissed me off.

My foot felt like it was in a pressure cooker. Then it felt like it was being crushed. Now my big toe is hurting big time. I call uncle, except I don’t think it works. I found my very last breakthrough med. Tomorrow I got to call and have them change the order and make sure the count is so I can take more than 1 a day. Otherwise the pharmacy won’t fill it and I’ll chop my fucking ankle off.

I will need a shower tomorrow. I hate showering. I need to shave my head to keep it bald. Also need to do a touch up of shaving because I missed some spots. My foot isn’t going to be happy. Then I got PT. Oh joy. Yes the curative physical therapy to increase mobility. This is interesting as I haven’t moved my damned ankle in 17 fucking years. It is a fucking joke. Oh and the damn pain clinic refuses to use CRPS. I have left ankle/foot pain. Can I bring a bat to my next appt and clobber them over the head?? Not to kill them, just to knock some sense in them or make them read my damn medical record that says why I need prescription pain medication. Fucking assholes.

I am done trying to say to them what I need. I have a better chance of winning the lottery. My foot is screaming. It is too late for gaba. I need to be up early enough to call the assholes and hope it doesn’t take a week to change the order. I can’t believe I was stupid and didn’t read it before I left. Ugh. Live and learn I guess.

Maybe 300 mg of gaba to calm some of it down. My PT is going to be unhappy with me. I’ve only done home exercises about 3 times. I couldn’t do it the 1st two days after our last session because my thigh hurt too much. Thursday I did it. Friday I was off to asshole’s office. Saturday I slept all day. Today I was in a fuck it mood.ok so what is that just one time? Oops I can’t count. We’ll just say 3 times. I probably am not going to see her anymore anyway. I really don’t want to. I think it is pointless to see her for my ankle/foot. I saw her before and I was in too much pain. And without breakthrough meds, forget it. I am tired of working through the pain.

I have no life. Just doc appts. I can’t remember a day I went to the Square just for fun, to have my espresso and write. Hasn’t happened in so long. Maybe February when I was trying to write the story in my head. It is gone now. Why bother writing it when I am going to die soon?

Part of me is trying to hang around. But with every painful flare, it gets less and less. Just do it runs through my head. Someday soon. I hope. Just do it…

Tired of pain taking away things I love

Yesterday, I had a bad flare. I tried writing but after around 100 words, I was exhausted and couldn’t continue. I had therapy yesterday and for some reason my legs were really sore so walking was difficult. I thought it would get better as the day went on and I did my things but it only wore me out with each step I took.

I was in agony most of the night. I didn’t get to sleep till 4am. I kind of lost track of time as I was trying to find a tea kettle. I had made a cup of tea and the kettle we have is all rusted on the bottom, making things taste different. I told my mother and she refused to change the kettle and there is no way of getting the rust out.

I made coffee using spring water and saucepan. Coffee came out perfect. Then we had a t storm and I got a migraine with severe nausea. I still feel sick to my stomach. I didn’t think I was going to write today as I really am tired. I don’t know if my writing means anything to anyone. I’ve just been writing for me, because I like doing it. But after yesterday, it was the first time in over a year and a half that I didn’t write. I thought I might be able to write later but then it was after midnight so I just posted the pic of the pup. I might do that on days I am not up to writing more than a paragraph.

My writing means a lot to me. I have been pushing through tough days because I didn’t want to give in to chronic pain. Yesterday was the worst in a very long time. I usually am able to write how bad things are and yesterday, words just couldn’t come to me. I kept staring at the screen cursor wondering what to write next. My head just was filled with blankness.

Today was a little better. I slept most of the day, despite my med alarm going off to remind me to take my pain meds. It is really hot in my room though the temps have cooled off. I want to open the window but I still haven’t put in the screen. Maybe I will have my bro in law put in the AC and the screen. It kind of early but at least when it is humid, I can cool my room down. I cannot tolerate heat. As hot as it is in my room I have to keep my sheet covering my foot because the ceiling fan air hurts me.

If you are a daily reader, please like or comment if you can. I’d like to get an idea of who is reading. My stats aren’t really a good indication. Thanks and I am sorry for not posting yesterday.

A little about my day and CRPS

I’ve had a rough day. Despite sleeping for most of it, I am still in a lot of pain. Have been in a flare since noon yesterday. I just can’t seem to get on top of the pain.

I was hungry when I woke up around 2. I didn’t want to get out of bed. I just left my room once in the morning to use the bathroom. I brushed my teeth as well. My mother called me saying she was going to my aunt’s for a party. I heard voices downstairs and wondered if it was the TV. I carefully went downstairs and sure enough the TV was on. I had a bowl of cereal.

Came back to my room and took my pain meds. Also took some neurontin hoping for it to help. I couldn’t get comfortable on my right side so rolled to my left. I must have been there for a bit when it felt like I was being stabbed in my ankle and top of my foot. My phone rang and I got a couple messages. My niece had called asking how I was as my mother was worried. I decided to order pizza and dessert. I shouldn’t have but fuck it. I wanted pizza.

The following is the myths and truths about CRPS:

Fact versus Fiction: the Truth behind the CRPS Myths

Like many other things out there that scare and confuse people, Complex Regional Pain Syndrome has spawned so many myths about it. The bad thing is, these myths tend to perpetrate beliefs to people who suffer from CRPS that leads to their detriment. Listed below are seven of the most prevalent CRPS myths that are circulating, and the truth behind the myths.

Fiction # 1: Complex Region Pain Syndrome is a very rare disease. You have a small chance of getting it. It is also a new disease.
Fact: Substantiated reports of CRPS have been recorded since 143 years ago. It was during the Civil War when Doctor Silas Mitchell Weir and his contemporaries first wrote about it. It was given many names such as Shoulder-hand Syndrome, Reflex Sympathetic Dystrophy and Post-traumatic Dystrophy, to name a few. The term Reflex Sympathetic Dystrophy was junked during 1995 when the International Association for the Study of Pain, or IASP, feels that RSD did not truly cover the signs and symptoms that the illness presented. They were the ones that coined the term “Complex Regional Pain Syndrome”.
Fiction # 2: CRPS is a localized disorder, and will not spread.
Fact: In as many as 73% of the recorded and confirmed cases of CRPS, the pain actually started in one part of the body, and then started to spread. In the worst cases, it actually affected completely healthy internal organs as well.
Fiction # 3: CRPS is a relatively quick disorder, and can be gone in as little as 6 months.
Fact: CRPS is like riding a bicycle. Once you get it, it never leaves you. At present, there is no cure, only treatment and maintenance to relieve pain, and even this does not work for everyone. There are a very few lucky ones who experienced remission, but found that even little to no stimulus at all could trigger a relapse.
Fiction # 4: The pain of CRPS cannot be alleviated by opioids.

Fact: Studies have shown that the use of opioids does actually help patients suffering from CRPS. Opioids can lower the level of pain significantly, allowing patients to be able to receive physical therapy. In some cases, they can even help the person lead a pretty normal life. Many patients would not be able to survive or bear the level of pain that they would feel if they were not given opioid treatments.
Fiction # 5: It’s all in the mind. CRPS pain is a psychiatric one.
Fact: The pain that a patient feels can actually register on a pain scale, and the symptoms that accompany it are also very tangible. The signs of the pain are all very visible, such as changes in temperature, color and bruising. Limb atrophy or contracture can also be seen. This myth is quite prevalent, as even some medical professionals put stock into it.
Fiction # 6: CRPS can only be caused by major injuries.
Fact: Records show that, surprisingly, CRPS is most often caused by small injuries or surgeries. The most common reasons given when asked the CRPS cause were sprains, broken bones and minor surgeries such as carpal tunnel surgery and removing a foot neuroma.
Fiction # 7: A definite sign to know if you don’t have CRPS is if you don’t get relief when you use a sympathetic nerve block.
Fact: Just because it doesn’t get affected, doesn’t mean it’s not CRPS. It could mean that your pain is what is called as SIP, or Sympathetic Independent Pain. For those who are suffering from CRPS that do get relief from sympathetic nerve blocks, they are suffering from SMP, or Sympathetic Maintained Pain. If you get a series of blocks, you may put your CRPS into remission. Also, it can result in longer periods of being pain-free. Because this myth is also a widespread one, many people have delayed seeking this kind of treatment, believing that they do not have CRPS.
Always take everything you hear with a grain of salt, and remember that the best weapon is knowledge. It won’t hurt to read and talk to an expert about Complex Region Pain Syndrome so that you’re better prepared to deal with it, and the life that comes with it.

Painsomia and me

Another night of pain. My foot and ankle are lighting up like a Christmas tree. I’m really tired and want to sleep but I just hurt too bad. I’ve taken all that I can right now. I might take an ativan to see if that helps.

I’m really thinking about suicide. I can’t help it. I feel so rotten. I don’t know what the point is to keep going. I really just don’t want to be this way anymore. I’ve tried to get help but no one wants to. I just keep getting the run around. See this doc,who sends me to this doc, who sends me to yet another doc. It is like a passing game. Mean while, my pain is through the pain roof. I get pain anxiety attacks. And then people wonder why I get suicidal. 

I put my compression sock on. It helped the hammering pain of my malleolus. But then the pain that was shooting down to my foot returned. I can’t keep up with the changing pain. 

I’m probably going to sleep most of the day,which means I probably won’t be making the phone calls I need to make. I need to make them this week. I am scared to do it. It will only make my plan more real.

Because I cancelled my appt with my therapist, it will be the 2nd week I’ve missed him. Last week he was off. I don’t know if I should continue with him. I don’t see the point. Like why bother if I am just going to die. I can just talk in the meantime about stuff. He isn’t a structured therapist.he pretty much just goes with the flow. I like it but sometimes it is annoying.  

I’ve been keeping a draft about my deep dark stuff. I wrote about it when I am really feeling despair. I been writing in the dates I modify it. I don’t know if I will publish it. I want to add a few more paragraphs to it. Then I think I will. It will be password protected so “hero”jerks don’t call the cops on me.

Ativan is kicking in. Thanks for reading. 😊 

Worst Monday ever

I woke up an hour before my alarm went off. I used the bathroom and brushed my teeth. I wanted to go back to bed but I knew if I did, I’d regret it. I laid down but didn’t sleep. My mother called me. She wanted me to go to the bank for her and I said to leave the stuff on the table. I wasn’t feeling too well. My foot hurt so I took some pain meds. Then I got dressed.

Went downstairs and got my mother’s bank stuff. Then I went to the bus stop. It was cold. A storm had been predicted. Just great. I got to Starbucks later than I wanted. I quickly ate my breakfast and then bought some new coffee and a French press. The one I had kept leaking coffee no matter how much pressure I put on the lid. Time for a new one.

I grabbed my things and went to the train. I put my ear buds in and wow the music was loud. I lowered the volume. Should have known it was the start of a migraine. Train came and I went into town. I got to my doc’s office with 2 mins to spare.

I was called in a few mins later. The medical assistant took my vitals. Asked about my pain and then said the doc would be in soon. I finished my espresso and threw it away. Doc came in and told him I couldn’t stand the pain anymore. He had to let the pain doc do something for my pain. I didn’t threaten suicide or anything. He read their notes but didn’t tell me what it said. Then I told him to contact my Neuro to find out what else can be done. He read his note and it said he suspected a superficial fibular nerve injury rather than crps. This was before the bone scan confirmed CRPS. My pcp said he would send him a note. Then he examined me. I told him my leg was swollen. He said it was consistent with the fibular nerve. I wanted to kick him. The poking aggravated my leg and ankle. The top of my foot was already nuts. I told him this half hurt and the other didn’t. I put my shoe back on. He wanted to do a tox screen. I forgot to ask him about CBD oil. Oh well. I left a urine sample and made an appt in a few months.

I got to the Square and just caught the bus. I went to the bank and by the time I got home, my ankle flared up. I took some pain meds and changed to my PJs. Then I made a sandwich. Came back to my room and my head exploded. I felt sick. Took my migraine meds, the zofran, and magnesium. I took the mag because the pain in my leg was causing spasms. Then my foot lit up like a Christmas tree. I was cooked. The barometric pressure was 29.95. Explains the migraine and increase in pain. I’m still trying to get it under control. I feel really sick. Sounds hurt so bad as does light. I’ll be going to bed early.

After I had some Sloppy Joes, I got the mail. The books I ordered came in. One is a medical thriller called the 4th procedure. The other book is called helping the suicidal person. If the migraine is gone tomorrow, I’ll read one.

I don’t ever remember having so much pain in my head and foot/ankle at the same time. The city has already called a snow emergency. There is no school tomorrow. I’m not going anywhere. I feel so miserable. I hope I sleep okay tonight. Sounds like my mother is done watching TV so maybe I can rest now.