Category: cauda equina syndrome

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.

fears still there

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

Well the fear of seeing the surgeon is over. Now the fear of the MRI is back on. Tomorrow the secretary will call me with an appointment. I am going to try and hydrate myself between now and then so that my veins are “lovely”. I’ve had the runs today so I think drinking fluids will be a good thing. I was taking fiber but I don’t know what happened. Too much I guess.

I am really tired and sore from all the walking and standing I did today. I had therapy but my therapist was more nervous about things than I was. I hate when she gets like that.

I’ll write more later.

Fearing the Worst

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

Fearing the Worst

I had taken some Nyquil a couple of hours ago to try and get to sleep. Pain is preventing this from happening as every time I move, my thigh goes berserk. Now my inner thigh is feeling like it’s on fire. This isn’t good. I am glad I am seeing the neurosurgeon tomorrow but I fear that without new images, the appointment is going to be useless. All he can do is nod his head in agreement and then say I need a new MRI stat. I am feeling more nervous as the more time is wasted, the more nerve damage I could be having. I didn’t do anything today except write down an outline and print off a few articles on this new paper I plan on writing. I tried writing it today but I couldn’t think of a beginning sentence so just wrote an outline. I thought the articles would help, but all it did was lead me to more stuff to outline. Very frustrating to me. I usually am able to write off the bat but today it was difficult, probably because I am in too much pain. Word to the wise, never take Nyquil unless you really want to sleep. I have been fighting it for the last few hours and literally feel sick to my stomach. I want to sleep but this pain anxiety is keeping me from it. It’s awful!

I tried to get in touch with my friend that is in the hospital but just got the busy signal. I will see him tomorrow. I heard he is supposed to be in till Christmas Eve. I am glad he is not spending Christmas in the hospital. That would be terrible.

Another reason I can’t sleep is because my sister and mother are having a yelling competition. My mother is deaf and so my sister has to yell for my mother to hear her. It’s going through my head like nails on chalkboard. I am just very grumpy because I am so worried about what is going on with my leg and that I am in pain. I wish my sister would leave so the house could be quiet again. Maybe then I can finally go to sleep.

I have been swearing on Twitter and Facebook and in real life but that doesn’t seem to be helping my pain. They say that if you are in pain and swear, it will help ease it. I should be pain free as anything if that were the case. Liars. I hate being in this much pain. I haven’t been in this much pain since my surgery 9 years ago. I fear the worst is happening. I really wish I saw my PCP the week before I was to see him last. I know he would have ordered the MRI and I wouldn’t be having this worry right now about what is going on. Fucking doctors, always chicken to do the right thing. They never think how the patient with PTSD feels when this is happening to them again. I just hope my neurosurgeon understands and wants to help me with this. Otherwise, I am up the creek without a paddle. I am so frustrated. Why do docs always have to wait for the worst to happen before they take action? So pisses me off.

I think my next reading adventure is going to be an old psychology book. And by old, I really mean it. The book was published in 1938. I just hope it doesn’t fall apart as I read it. I was going to read some of my other books but I am tired of reading history and fiction. I want to read something else. I figure psychology is the way to go. I also was pondering on a writing book called “Writing Tools” and I might switch to that if the 1938 book is too dry. I still plan on finishing the American Gods, even though it freaks me out some. I am half way through it so I might as well finish it.

Saturday Blog 39

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

My sisters and I went out. It was a good time. We had plenty of Chinese food and brought most of it home. We just couldn’t finish it all. I came home and there was mail, mostly for me. Two good friends sent me Christmas tidings. My friend from Texas was very kind. She sent me a Hope coin. She wants me to hold on to it on my bad days. I am grateful to have her in my life. We always have good chats. She understands how dark my depressions are and doesn’t shy away from them. She wishes I don’t have them but she isn’t judgmental about it. She is a really good friend.

Even though I didn’t do too much of anything today, my thigh is hurting. I think if I sit too long, it aggravates it. So I try not to sit too long and walk around a little bit. I hate having this pain. It’s really driving me nuts. It’s making me more nervous about seeing the neurosurgeon on Tuesday. I just hope I am not wasting our time with this. The pain is not consistent and it doesn’t always come on when I sit too long, or at least when I think I have sat too long. It also has been brought on by walking home, after doing all that I did. I wish my fears would just go away but I have good reason to be fearful. Having a bad back is never an easy thing to not be afraid of. I just want an MRI to see if there are changes. I know that because I don’t have weakness or bowel/bladder problems there is probably nothing to worry about but I worry anyway.

I got an email from my favorite author. He finally described what a short story, novella, and novel were, in terms of word count. He will be coming out with a revised book about writing sometime in the next year. I will be getting this book because I love his writing style. He has been doing this for more than forty years so I think he knows something about writing.

My mother needed technical help with the TV as she was using one remote to shut the TV off and the other to shut off the cable box. Then was wondering why the TV wasn’t working. Going down and then back up the stairs really hurt my thigh. Seems anything to flex the muscles hurt. Dammit. I hope it calms down. I took a pain pill because my ankle is flaring. Hope it calms down both. I hate being in so much pain. I really want to end things tomorrow. But I promised my therapist I wouldn’t. It’s too bad I always keep my promises, but I never keep a promise to myself. Funny how that works.

My birthday is the day after the meeting with the surgeon. I am tempted to ask my therapist if I can stay with her overnight. I just am dreading this day so much. Why can’t I just stay 39? I just wish my family wouldn’t make a big deal out of it. It’s just another day.