Tag: chronic illness

Venting

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

Venting

I vented to FB about a blogger that was bugging me. I had to get it off my chest because it really was bothering me. I got no responses to the vent but I wasn’t looking for one.

As mentioned previously, I am reading the book “The Outsiders”. I am remembering the movie as I am reading it, even though it has been more than 20 years since I saw the movie and read the book last. I am at the part where Johnny will soon kill someone and I am hesitant to read it. It’s not a pleasant scene.

It’s official, I have a cold of some sort though I don’t feel really sick from it. I just have a miserable nose and the congestion is causing my upper teeth to hurt really bad. I have been using Afrin to unclog my nostrils but the effect is temporary at best. Then I start sneezing and I am wondering how much of the stuff I am sneezing out. All discharge is clear so I don’t have an infection. I am still taking D and drinking tea with honey. I am finally hydrated as my pee is a normal clear yellow rather than a dark orange color. I hate being sick. My lips are cracked so bad that I can’t put any moisturizers on it because it hurts and I have a bloody lip. I am really terrified that a sneeze is going to knock my back out. That is not going to be good when I get the MRI next week.

I had to refill a few prescriptions and this time it’s costing me money. I guess my free copay expired at the beginning of the year. I got to find out why one of my generic medicines is fricken $20 and the other is less than ten. I hope it’s an error. I knew I would have to pay so I have been careful with my money since my birthday. I also have my mother’s birthday coming up so I plan on getting her a sub. She loves getting an Italian sub from one of her childhood hangouts. It’s the best that I can do for her as I need to watch what I spend before the end of the month.

I feel really nervous about talking with my therapist tomorrow. Normally, I am hoping for another week off but this time, I am looking forward to our time. I need to find out about something she wrote in my birthday card to me. It’s bugging me really bad and I hope it’s not true to the extent that I think it is. I don’t plan on seeing her until the end of the month when I get paid again.

I made my phone calls today. I was on hold for a good many minutes as I knew I would be. I also reserved the Zipcar so I would have it. I have to check and make sure I have the right garage/place so I can take it. I think it is, but it’s hard to know when I don’t know the name of the garage. I requested just three hours because it shouldn’t take that long and it gives me time to get gas should I need it. Sometimes the person before me doesn’t fill up and it drives me crazy. I hate leaving a vehicle with less than a half tank of gas.

I knew I was going to be up late. I hope to be sleeping by midnight. I need to have rest but with all the tea I drank, I have to use the bathroom. Plus I drank caffeinated tea so I am kind of wired from that. I just took some pain meds because my thigh is acting up. The temp dropped another ten degrees so I am hurting. I knew I was going to be anyway from all the walking but I wasn’t expecting the temp to be in the teens. I am glad I had my mother turn up the heat as it’s nice and warm in my room. I don’t have to be putting on layers of clothes to stay warm, which doesn’t help when you have a stupid cold.

I filled my pill box. I am thinking one of these days I should rearrange where the pill bottles are so it’s easier for me to go through them. I have them spaced out all over my bureau. I should just have them in a box so I know that is what I need. Job gets done but I feel like I am playing don’t knock down dominoes because I have so many pill bottles. I honestly don’t know how I got to be on so many meds. It’s crazy that I take so many pills. I know most people with chronic conditions like me do take a lot of pills, maybe even more than I do. It just sucks because I remember the days when I was just taking two or three pills a day and now I am on four times that amount. And I take meds twice a day now where before I just took them once. I know I have to be on them if I want to survive but sometimes I wonder if it is necessary. Like being on two BP meds. Maybe a higher dose of one med would be sufficient to keep my blood pressure in check. I know losing weight will be the easier answer but I don’t see that happening. The meds I take make me hungry. I eat late at night because for some reason, after I take my meds, I feel like I am starving. And I can’t sleep on an empty stomach. If I do, I usually dream about food and wake up hungrier than I did before I went to sleep. Then the docs wonder why I can’t lose weight. They think it’s easy to control your eating but when you have meds that make you hungry, it’s kind of a losing battle.

A story is percolating around my brain. I am hoping it comes out soon. I think I am ready to write about my childhood fantasy as my mental illness short story piece. I just hope that when I do, I don’t fall back into the delusional thinking and lose track of where I am and what year I am in. I want to discuss this with my therapist first as I will need her support around this or I will become dangerously psychotic.

I never showered today. I got too congested and didn’t feel like it. I seriously need to shave and that is part of what is holding me back. It just takes so much time and it is exhausting. Then you need to shower to rinse off the hair and stuff. It always takes so much out of me when I do it. It also sucks when you are sick because you just want to get in and out. But I have neglected shaving for some time now and it’s causing me to itch and I hate it.

Recovery…what does it mean?

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

Recovery…what does it mean?

I keep hearing people talk about recovery and I am at a loss. Can someone enlighten me on what the hell it is? And what exactly are you recovering from?

I hear from suicide attempt survivors all the time this word. Do people who think about suicide really recover after they attempt? Because I keep wanting to try again and again. I haven’t made an attempt in years but I think about suicide constantly. Or is recovery just something that happens after you learn different coping mechanisms?

The reason I do a lot of suicide research is because I want to find something to help me. If I never looked for it, I wouldn’t have found CAMS and the SSF so useful. I have also found other assessment tools but nothing else worked. Traditional therapy didn’t work for me. I had to find a therapist that treated me as an equal and collaborate with me on what works and what doesn’t. It’s still an ongoing process as my suicidality gets worse during certain times of the year than others.

I don’t think I will ever recover from my mental illness. I think it will wax and wane, just like my suicidality, but it will never get better. I might find symptom relief through medication but even with medication, my depressions get the better of me. They are too severe and too frequent to really get relief from them. Medication has been proven useless with treating them. I am just left to suffer through them until they pass.

Then I have the physical pain that I deal with. I don’t think I will ever recover from that. It just seems to get worse during the temps of New England. My former PCP thought that I can just do something to make me feel better and things would be better. Wishful thinking. As much as I don’t want to be on meds, I know it’s my new way of life. It’s the only way I can survive. Otherwise, I think I would entertain the thoughts of killing myself, and by entertain, I mean attempt.

CDC and Chronic Pain

by Midnight Demon, posted in cauda equina syndrome, Chronic pain, chronic physical pain, suicide

“I invite chronic pain patients who rely on medications & are still alive, to offer their expertise to the public conversation.”
Terri A. Lewis, PhD

This statement just rubbed me the wrong way. In fact, it infuriated me because there are so many people taking their lives because they DO NOT get medications due to the opioid policies some doctors have. The CDC is proposing that primary care doctors PCP’s no longer prescribe narcotics for their patients. I haven’t read the report but it was stopped only because a lawsuit was threatened if it was published. The guidelines were written by people that had NOTHING to do with chronic pain. Therefore, it didn’t make sense for them to have these guidelines. I would write to them but I fear that if I do, I will be prosecuted for my actions down the line. Call me paranoid. I only take 4-6 pills a day and if that were cut, so would my life.

The statement also implies that taking these medications is a death sentence waiting to happen. This isn’t true. There are plenty of people who SAFELY take these medications daily and are still alive. Yes, there are some that do NOT because they go to different doctors and the combination of other opioids makes them sick. My ex’s neighbor died from an overdose because of this. Had one doctor been prescribing, her friend might have lived a little longer. She was terminally ill with something other than cancer. Obviously, she is the one that is “not alive” to come forward about these supposed guidelines.

If Primary care docs can no longer prescribe these medications, where are chronic pain patients supposed to go? “Pain clinics” only want to experiment and give injections, usually because it’s more money than writing a script. I have seen two pain doctors and they both didn’t want to take over the pain management I was under. They just offered invasive procedures and when I refused, I no longer was a part of their care. I’m sorry but there is no research to support that the injections would benefit me. I wish I kept the report that contradicted the injections. There was an article a few years ago that said that it was more dangerous to have them than not. I am not going to risk have something called arachnoiditis for the sake of a pain clinic writing a script for my pain meds, when the pain meds already work for me.

I need to have my primary care doctor continuing to prescribe me these medications. It’s safer and easier than seeing a specialist. The meds help me to function better, though I rarely take them when I am outside the house. They make me too drowsy to get on the bus and train. So I suffer through my pain to get to where I need to go. Taking my four tablets a day is not killing me. It’s keeping me alive enough to see another day. Because without them, I would seriously end my life. And I don’t think the CDC wants that.

It’s My Favorite Artist’s Birthday

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

It’s My Favorite Artist’s Birthday

It’s Taylor Swift’s birthday! She is 26. I wished her Happy Birthday on two different social media platforms today. She is one of my favorite artists. I can listen to her song, Love Story all day and not get tired of it. The same with her album 1989, which I am currently listening to.

It’s funny because when I was that age, I could have sworn I was 25 again. My 25th year was not very kind to me. I got the dreaded condition known as CES (cauda equina syndrome), and I didn’t know if I would ever walk again, unassisted. I felt like I lost a year because of this syndrome. And now, almost 15 years later, I might be facing it again.

My pain levels have dropped and my right leg is no longer hurting me. But I am not destined to have a pain free day because my left thigh has decided it is going to hurt today as well. I just cannot win. The pain isn’t too bad, it just hurts. I kind of wish I did something so I can say that I did such and such to make it hurt but I did nothing. I just was sitting on my bed, playing on my laptop when the twitching started and then it was sore the next day. Now this soreness continues. I am going to try and call my PCP’s office tomorrow and see if the neurosurgeon got back to my PCP. If not, I will call my neurosurgeon and see if I can make an appointment. I really like this guy. He is nice and very caring, which is rare in the surgeon world. My surgeon before him had the bedside manner of a peapod. I didn’t like him at all. But it was an emergency situation so I didn’t choose this moron. I didn’t choose the second one either (nice surgeon). My PCP got him because he was on call. I lucked out because he was rated top pediatric neurosurgeon in the country. I know I am no longer a pediatric patient but I still want him as my doc. We’ll see tomorrow. I just hope the guy isn’t on vacation.

I will never buy Stop and Shop protein bars again. They definitely were not what I was expecting. It was a granola bar with chocolate packed with nuts. I was looking for something like PowerBar Protein bars where you have chocolate and the inside is peanut butter (or some other protein packed filling). I felt like I was eating a candy bar. A Yodel would have been better and more filling. I am so disappointed.

I have to read my Lincoln book at some point today. I feel like if I don’t read a book every day, I am just wasting my time during the day. Even if I just read a few pages, that is all that I want to do. But I have a pile of books to read, especially on Kindle. I really want to finish American Gods so I can get back to Dostoevsky. I want to read Brothers Karamazov. I got a collection of Dostoevsky’s works for like 2.99 months ago and I haven’t touched the collection since then. Every one on Twitter was talking about American Gods so I got that book. The book is creepy and has a lot of sex scenes. It’s definitely not children’s material like I thought it was. I also have a two John Grisham books (one on Kindle, the other a hard cover) that I haven’t read. I was a very avid Grisham reader until I lost interest in books for a while. I thought he stopped writing but when I was at work, a friend of mine was reading a book that I didn’t read and I found a LOT of new books by him. The last book I remember reading from him was Skipping Christmas. That was a fun book. It was the first non-lawyer book that he wrote. I really enjoy his writing.

I haven’t done anything to do with hygiene today. I haven’t showered in days and I didn’t brush my teeth today. I was going to this morning but told myself I would do it “later”. “Later” still hasn’t come yet. My mother is taking a shower so I think she is going out tonight. I think it’s my cousin’s birthday. I never get invited and even if I did, I usually don’t go so it’s okay. I might take a shower later tonight before I go to bed.