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.

Woke up at 3 in pain, yay!

I knew I was going to wake up when my pain med wore off. I thought the neurontin and Ativan would cover me. I was wrong. I have such intense burning going on and there feels like a little ball of pain toward the middle of where my ankle and foot meet. This is a new pain. Got to love CRPS and all the different pains it gives you. It is never the same pain twice, usually.

I just had some cornbread so that flared things up because I had to go down then up the stairs. I was hungry. I have decided to give some of my casserole to my barber and his pal. There is no way I can eat it all myself.

My big check came in so I paid my bills. Now I am broke again. Easy come, easy go. Sucks being an adult.

Pain is awful. I really wish I could have a break, if only for a few hours. I got into such deep despair last night because of it. I thought of ending things once again. I just don’t have a place to do it. I need to find one. I haven’t 100% made up my mind to do it, but having a place would ease the anxiety. I just feel everyone would be better off without me. I feel so useless. I can’t function anymore because I am not sleeping well. These broken sleeps are making me feel like shit most days. I’m never going to get better.

Been having a lot of gender dysphoria the past few days. My mother has been calling me miss and even though I correct her, she doesn’t care. I asked my sister to call me her brother and she said if I want to. I’m getting frustrated with the whole pronoun thing. If I didn’t have breasts, it might be easier. I don’t know when I can have top surgery or if my insurance will pay for it. I’ve been too scared to call and ask. I will ask the LGBT doc when I see him in a few weeks. O hope I don’t have to lose weight because that will be a hard battle. I’ve only gained weight because of my meds. I know I don’t eat right. I’ve been thinking of joining Nutrisystem. It is a weight loss program but I don’t think I can afford the food. I’ll have to look into it. I have other stuff I need to get done before I spend like $300 on food to lose weight.

I wish my breasts were smaller than they are. Women in my family have such huge breasts. I hate them on me. Actually, I think loathe is a better term. If I could cut them off myself, I would. Also been wondering if I should get a penile operation. I don’t know. I guess in time I’ll figure that out.

I requested my records from the pain clinic to see what they wrote about me. I think it is important for me to know. I have every right to see my records. I hope they come soon.