Mother’s Day 2018
I’ve had a pretty good day, so far. Last night I was in a lot of pain and was not sure I would be able to have dinner with my family at a restaurant. I woke up feeling okay but my ankle became sore after walking on it for a little bit. I gave my mother her gag gift and she laughed.
The restaurant was pretty cool. It was Chinese food. It was pretty good. I had tonic water as I didn’t feel like having soda. My nephew came with us and he enjoyed what he had. He ordered Pad Thai. I had a bite and it was good but not as good as the one in Boston that I had the other day. He said we should go there and then to a Sox game. I said that sounds like a good idea. I ended up driving home with him. I was familiar with the area so it was easy to get home. I had to tell him the exit to get off. I thought he would know but he didn’t. He is still learning.
As soon as I was out of the boot, my foot acting up. My ankle is so blaring right now. I had went to the pharmacy to fill my meds. I did better today in recording when I take my meds. Yesterday I was not so good.
Early day for nothing
I’ve been up since 6. I don’t remember why I woke up. I couldn’t go back to sleep. So I got ready to go out and waited for the bus. My mother wasn’t even up yet. I brought the POS, hoping I would spend a few hours writing. But I was so drained and the espresso wasn’t helping. I was getting aggravated and pain was starting to get unbearable. I brought my pain meds with me but I wanted to go to my bed. I left and then picked up my screen before heading home.
The cousin I was trying to avoid was still there. If I had waited another half hour, I could have missed him. He brought up that I wrote a book and my aunt was shocked that I was published. I gave them a copy of my books. My aunt, like my mother, wanted me to write about something joyful. Then she said I should write about the family and I told her flat out no. I was so stressed I signed the books then went up to my room.
I tried to nap but the pain got worse. I was hungry but didn’t know what to eat. I wanted burgers but didn’t feel like ordering them. I had food so it was just a matter of deciding what to have. My mother made tuna the other day so I had that with crackers. There were hot peppers in it and my stomach didn’t agree with it. My mother was saying that she wanted mac and cheese. I thought she was going to make it her way, which is just elbow macaroni with American cheese melted on it. It’s really good. But she wanted the Kraft mac and cheese I bought. I made it and she complained. Never fails. It is a box, all you do is make the pasta, add the cheese, butter, and a little milk. That is it. It was too salty and I put too much milk. Oi Vey. I told her to just eat it. Next time she can make it.
Despite it being somewhat warm, my room is cold. I didn’t put in the screen because my foot was too cold. It still is. I got it warmed up and I took off the thermal socks. It’s my bad foot so there is nothing I can do. I have it under the heavy fleece blanket and it is still cold. Fucker. I will put the socks back on.
Sox play the Skankees tonight. I am kind of nervous/excited. I want to listen to it. We are one game ahead of the Skanks. These games will be a fight for 1st place in the East division. I really don’t want them to take over when we have had it all this time. But we’ll see. Just hope it doesn’t keep me up all night. I can get either excited or mad and then won’t be able to sleep after the game until I calm down. HAHA. True fan.
Saturday Blog 5-May-18
I woke up at six. I can’t remember why. Around 0630, my ankle started bothering me so I took my pain meds. I had wanted to get my screen today but I didn’t set my alarm when I fell back to sleep. I didn’t get up till noon and the place was closed. I took some more pain meds and then went downstairs. I took the Brie cheese out to make a wrap. Then I went back up to my room. I was hungry, forgot about the cheese, and ordered tacos. It was Cinco de Mayo after all. When the tacos came, I put the cheese back in the fridge.
After I ate, I decided to make Pumpkin cake. I haven’t had pumpkin in a long time. I never got to make it during the holidays because of pain. Now I have it for dessert tomorrow. I will bring some to my Aunt’s as my sisters and I are going to see her. We are going to have pizza. It should be fun but I am kind of dreading it because the last time I visited I cried. She has deteriorated so much. Definitely not the same person anymore. Sad that illness changes a person.
I had to file an infringement form on Amazon because there were sellers selling my book for more than what I listed my price as. I am not even sure it is my book they are selling or if they stole it and are marketing it for their own gain. I found out Amazon is letting third party sellers have the “buy” button but I don’t know what that means exactly. I found out that these sellers do not give the authors or their publishers money/royalties for the sales. I don’t know if that is what these other priced up sellers are doing. I just made some postcards for my 2nd book and I am wondering if I wasted my money. I was going to promote my book now it just seems pointless.
Berserk foot no sleep
(pic is of Mass. General Hospital taken in 1858)
I was lying down all propped up on my pillows, lying on my back all comfy. I was ready to snooze but my damn fucking foot went berserk and my pain spiked to a 13. I am still hurting. I just took my pain meds so I am giving it a little more time before I take another strong pain pill. It is so hot in my room and I am sure my chocolate has melted. I have morsels in my room. It is dark chocolate, my favorite kind.
I am hungry but I can’t stand on my foot right now. That would be murder. I wish I had a protein bar or something like that in my room that isn’t too crumbly. I don’t want crumbs on my bed. I really can’t wait for the temps to be in the 60’s without the damn humidity. I really hate the heat.
I had put a sock on my foot as the ceiling fan air was bothering it. Now the sock is bothering me. I can’t fricken win. I am so tired and I know I am going to feel like shit later today. I probably am not going to get new glasses as I will be so tired. It’s almost 3 am. I hate that hour as it then becomes a guessing game as to when I will fall asleep. I hope my mother doesn’t want to wear her socks tomorrow. I would hate to only get 2 or 3 hours of sleep. I put on the white noise machine. It is making me so sleepy but pain is keeping me up. I hate nights like this.
I met a few chronic pain people on twitter yesterday. I was chatting with one of them. I told her I had cauda equina syndrome and she was joking about how a horse stomped on my foot, causing me my pain. Her autocorrect did something to the spelling so she had to explain it as the tweets didn’t make sense. I noticed tonight that my left foot is getting smaller than my right, when it isn’t swollen. I am losing muscle, which isn’t good and probably what is causing me pain. I don’t know if it is the CRPS or nerve damage. Thing is I am using my foot/ankle so I don’t know why my muscles are wasting. So damn frustrating. I think I need to see the new neuro to see what he thinks. I hope I don’t have to go to PT to try and fix it. It will be painful, more than what it is now.
I think I will use the diclofenac gel on the top of my foot. Some times it works to lower my pain. Not all of it but just enough so I can bear it. I sometimes will use lidocaine but I think the diclofenac will work better as it might lower the swelling. I really don’t know if it will help unless I try. Maybe then my meds will have kicked in and I can go to sleep.
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.