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.

When suicide becomes the option due to the opioid epidemic

When suicide becomes the option due to the opioid epidemic

I have been involved in the suicide prevention things for the past eleven years or so. I have been reading research articles from those in the field. Then I became disabled and my suicidality increased but I have not made any attempts. The reason I say this is because I am now involved in the chronic pain community and found that there have been a lot of suicides since the crack down on opioids really started bearing down on patients and their doctors.

Recently there has been a woman in Montana that ended her life after the DEA went after her doctor. I find this, sadly, preventable. These pain patients have severe pain and need opioids to get relief. Since October, I have been trying to get adequate pain meds to relieve my pain but have been facing nothing but red tape. I have had two psych hospitalizations, which have not been helpful in the least. My psychiatrist is really worried about me. I have a plan to end things in a few months. It is a coping mechanism for me to make these plans. I don’t know if I will go through with it but it’s helpful for me to know there is an end to my suffering.

In the suicide prevention community, specifically a social media twitter group called SPSM (suicide prevention social media) there has been a lot of talk about getting the medical professionals to talk openly about asking about suicide as there has been research stating most suicides happen a within a period of time after seeking a medical professional. I argue that the psych professionals also have to ask the question, which sometimes does not happen for a variety of reasons. What is missing in those with chronic pain, is also lacking the talk of asking about suicide after pain meds have been forcibly cut or stopped all together. This kind of action has lead to multiple suicide that Dr. Kline, a pain physician, has written about.

I really think that if the pain psychologist in these pain clinics ask about it or even the health care professionals do, there might be a chance of saving a life. These patients feel their backs are against a wall and they cannot function without these meds anymore. The epidemic is nothing but hysteria. The CDC lied about their statistics and made it look like prescription opioids were the problem when it was really illicit drugs. Compounding the problem with chronic pain patients not getting the meds they need are the patients that have substance abuse disorder. The stigma surrounding substance abuse is probably as bad as those with suicidal ideation. There are no easy answers as some chronic pain patients has been grouped with the substance use and vice versa. Both need to be treated with meds but stigma and thoughts of not being able to be “strong” enough to stand the withdrawals or handle pain is just not a way of doing it. Unlike alcohol abuse where abstinence helps, substance use need medical assisted treatment with meds such as suboxone. There needs to be no legal punishment for those seeking treatment. More overdoses have happened due to people being released from jail and then using again because their tolerance has been lowered while being away from their substance.

With chronic pain, those that have been stable for years and being taken off abruptly, often turn to suicide because their pain is making their lives miserable. They can no longer do the things they did while on pain meds for their chronic pain. Often these patients feel abandoned by their doctors and some have been and are unable to find another doctor to treat them. Some have to travel far from their homes for care. It is a sad situation. Pain needs to be addressed. It was the 5th vital sign but the crisis has done away with it. So those with deep emotional pain don’t get asked about suicide and those with deep physical pain are neglected and never asked about their suicidal thoughts. Can we bridge this huge gap? Tough question to be answered.

going out fail

Going out fail

I woke up around 9. I had about 6 hours of sleep so that was good. I was feeling okay so decided I would go out. I showered and brushed my teeth. My mother was going over my aunt’s because she was going to Walgreens with her. I am glad she is going out. She needs to as I am sure being stuck in the house sucks every day.

I had taken my phone off the charger when it was fully charged last night and I was at less than 50% because I had messages. I hate when that happens. I put it on the charger after I took my shower for a little bit. I had an extra power cord so I could charge it when I got to Starbucks. I got dressed, grabbed my cup, and left for the bus stop.

When I got to the Square and started towards Starbucks, my ankle started hurting. It was crowded in the store but I found a seat. I got my breakfast and espresso. The pain didn’t get better so after I finished eating, I decided to check the strawberries at the grocery store then go home. I missed the bus and the next the one wasn’t for another half hour so I had some time to kill. The strawberries were expensive. I got a wrap for lunch and then went to see my barber to see if he had my dish. He didn’t have customers so went to his house to get the dish. I waited and met the fill in guy. He seemed nice. My barber came back and I gave him my number so he could call when he wanted the casserole again. He said thanks and I went to the bus stop. My ankle was really smarting. I could barely walk home. I struggled up the stairs and was saying to myself that this story is never going to get written. I was feeling hopeless again because pain has taken so much from me. Now it’s affecting my writing (not blog related). Just sucks because I really like writing and I know this story will be good if it ever gets out of my head. Maybe I can use this POS to write it out when I get the chance.

I threw caution to the wind last night and bought a new laptop. It was within my price range, has 8 GB RAM and a 1TB hard drive or SSD, whatever you want to call it. It comes in on Friday and I also ordered Office 2016. It takes a little getting used to but I like it and think I have figured it out. It is similar to 2013, which was what I had before, but the saving of a document or other files is different. I think it has too many clicks. The new laptop weighs about 5 pounds, which isn’t too bad. This POS weighs around 2 and is really light. I am kind of worried with the delivery as I am not going to be home but soon as the shipper gets it, I am going to see if they can change the time/date so I will be home.

My lower leg is throbbing so bad. I am listening to Cam to try and distract. I am going to have my lunch pretty soon. My mother is making pork chops for dinner. I am not crazy about it. Last time they tasted funny. I didn’t get sick so I guess it was just the taste of the pork.

Painful Sunday

Painful Sunday

I had put on the compression sock before I went to sleep sometime last night. I wasn’t in too much pain until I took it off. The elastic bothered my foot so bad that it was intense pain. Luckily it settle down some, on its own. I was determined to make the crispy buffalo cauliflower bites today. It was costly though and they didn’t come out that great. My mother didn’t like them and complained there was not salt or pepper. I saved the sauce and cauliflower. I don’t know if I will make it again but it was good to try it. My mother think I should have made it with egg. Everything is better with eggs which is why we go through so many. We should just own a few chickens. It would be easier than buying them.

I didn’t answer when my mother called me saying dinner was ready. I was so mad at her. In the end she ended up cleaning up the mess I made. I felt bad but there was no way I could do it. I could barely stand after the cauliflower was done. I got hungry and even went downstairs with the boot. Damn thing didn’t stop or help the pain. I had trouble going back upstairs after I ate. My mother said to “rest”. I got mad again and punched the wall. I was so damn aggravated. I picked a new date as the date I had originally was too close to a birthday.

My loud mouth aunt joined facebook. I have no idea if it is her or not. She requested to be friends with me and I blocked her. No way she is knowing my business so she can gab about me behind my back, not like she doesn’t do this anyway. I just don’t need her calling my mother after every post, telling her what I post. My cousin did that and I blocked him. I don’t know if she now knows I am trans. I guess I will find out soon.

My laptop is fucking up. I have shit for memory and it finally has been filled up by god knows what. I cannot fucking wait to fix my other laptop or buy a new one. I don’t care at this point. It will be better than this piece of shit, though what I will do with it, I have no idea. A friend of mine was telling me about a different OS that takes up less hard drive space so maybe I will fiddle with that. I honestly just need this junk to have word and internet so I can post my blog. I can’t go on Facebook anymore because it eats RAM. I settled for using it just for Twitter but I can do that with my phone, which I am grateful I have pics hidden because one of the accounts I followed showed snakes and I am very phobic about snakes. If I went through via the internet the picture wouldn’t have been hidden and I might have had a panic attack. On Facebook you can’t do that, which sucks because a friend went to a friend’s house that had pythons. UGH. I manually hid that post so fast. Freaks me out!

I hope my fucking pain doesn’t keep me up tonight. Last night it kept me up till midnight but I slept for most of the day so it wasn’t bad. Plus I woke up around 0330 in pain so that wasn’t so great. I had to use lidocaine to ease some of the pain as it was just awful stabbing pains and I was getting a little crazy. My cousin called me and left a message to call him so I did. I automatically block his number because he annoys me. I told him I just don’t feel like talking every day. I rather text or email.

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.