The Neuropathy Diaries

Friday, January 21, 2022

Thank You, Gallo

Gosh, I haven't attended to this blog in quite a while.I've looked it over and there are some very silly posts on here. Lots of self-loathing. I deleted some of the really bad ones. Things are pretty much the same. I'm still not famous and I still have neuropathy. There are bits and bobs that may be interesting, but I can't think of any at the moment. I previously wrote about moments, and how life is just a series of them, and when those moments are good, you can get a lot of mileage out of them. I had a very good moment a few days ago on my birthday. It had been a low-key day. We ordered in dinner and I had a piece of cake. Later, I was playing on my phone and I sent Vincent Gallo an e-mail. I e-mail him every now and then, and occasionally he responds.I told him it was my birthday and that I was watching his movies. I also said I hoped he would wish me a Happy Birthday. A few minutes later, I received this:

Now is that a fucking great moment or what? I will be high off of this for weeks.

Wednesday, November 28, 2018

All My Friends Are Brown and Red

So apparently there is an “opioid crisis” in our country. People, and by people I mean addicts, are overdosing on drugs and killing themselves, and the government is trying to blame physicians for overprescribing.

Some emergency rooms have banned opioid use all together, which is strange to me as I don’t see how a facility can pre-determine what circumstances will come walking through the door. By saying no opioids will be administered, does that mean if someone in a car accident comes in with his leg hanging on by a thread, he’ll be given Tylenol and sent home?

Then there are those of us with chronic pain. For the vocabulary challenged, this means the pain never stops. This means the pain is not from an ailment that will eventually heal. It’s permanent. There’s is no surgery to correct it. For the rest of that person’s life, he will have this pain. Obviously there are degrees of pain, and some pain is tolerable without taking opioids. But when it comes to ailments like Neuropathy, Fibromyalgia, Rheumatoid Arthritis, and many other conditions that are incurable, the pain is unbearable.

Years ago, when I was first diagnosed with Neuropathy, I would get up in the night and go into my mother’s room, curl up next to her and cry. The pain kept me from sleeping and I was a wreck. It started in my feet and has now moved up beyond my knees. After nearly 20 years of dealing with this torture that must surely be some form of medieval punishment for something I’ve done in a past life, I can barely walk. I use a cane, I can’t climb stairs, and my doctor is recommending leg braces. Sounds sexy, doesn’t it? My hands are such that I can barely grasp a pen and I’m constantly wringing them and wearing copper infused compression gloves. Along with the pain, numbness, and electric shocks I endure on the daily, Neuropathy has also taken away my sense of balance. Even in my own home, I must grab onto the wall or couch to keep myself from falling over.

In this Opioid Epidemic/Crisis state of emergency we’re supposedly living in now, the new motto developed for chronic pain patients is Pain Acceptance. We are to accept that this is our life and to not be pre-occupied with changing it. Accept it and go about our day. Let me tell you - this is not possible. While I have most certainly accepted that my life as I once knew is over, I will always pursue pain relief. I will always be researching my condition to see if there are any new treatments or findings. I will always be fighting.

It is important that it be known that chronic pain patients taking pain medication are never pain free. Medication simply takes the edge off a bit, and that ever so slight relief we feel is what enables us to get out of bed every day (sometimes) and feed ourselves and bathe ourselves (sometimes). Many people struggle with those daily tasks. I know that without pain medication, I wouldn’t be able to sit upright and have a conversation with someone. I wouldn’t be able to enjoy time with my daughter or watch a movie. Forget working. Forget saving to buy a home or taking a vacation or going on a road trip. Forget almost everything I used to do in my old life. Pain medication allows me to somewhat function within the walls of my little apartment. I am in bed most of the time and every little task exhausts me. But I can still microwave a veggie burger and wipe my own backside thanks to morphine.

It’s also important to know that my doctor counts my pills every month to assure I’m not taking too many, and that I am randomly drug tested so he knows I’m not taking any illicit drugs. If I were to break these rules, I would be kicked out of the practice and cut off from my medication. I learned recently that my name is in some nationwide database listing all the medications I’m taking. So, to get a little relief, I’m being treated as a drug addict, when the most I’ve ever done is drink wine coolers in my 20s.

So, anyone who thinks I, or any other chronic pain patient, am getting high or using my disability to get drugs, should think again. I am not an addict. I am not someone who is seeking asylum from the real world by masking it with drugs. I’ve known people like that and those people are the ones who need to be denied access to opioids, not some 40 something woman in North Carolina who needs assistance getting groceries in the house and lives on disability, unable to afford to buy a winter coat. I’m just doing what I can to get by, and I live in fear my medication will be taken from me because of the bad decisions countless others have made. I’m not an addict. I am a patient. Please know the difference.

Wednesday, November 15, 2017

Please Tell Someone

I didn’t start making out with boys until I was around 18 years olc. I had my first kiss at 14, some under the shirt action at 15, and then nothing until I was 18. I was living in Charlottesville,Virginia and I met this guy who was a parking lot attendant near UVA. We were make out buddies for a few weeks. We never went all the way and we didn’t have oral sex. He kept asking, but I was so innocent that the thought of it terrified me. We kissed and touched and I realized what I had been missing. Still, I was dead set on retaining my virginity until my wedding night. This guy never pressured me to go beyond with what I was comfortable. He was really nice, his name was James, and I later found out he is now the bass player for Yo La Tengo.

When I was 19, I was living in Greensboro, North Carolina. I was busy catching up on all the partying I’d missed in high school. To me, partying consisted of drinking a few wine coolers and making out with the boy du jour. At that time, I could make out with boys and when I said stop, they would always stop. I was having fun and as long as I remained a virgin, I felt what I was doing was harmless. During the 80’s, the thing young people did for fun was ride up and down a strip of road, blast music, and yell out of their car windows at cute boys and girls. In my town, this was known as “cruising High Point Road.” This road is now called Gate City Boulevard and people don’t cruise there anymore. On one particular night of cruising with a girlfriend, we ran into some friends. These friends introduced us to another friend named Gene. He was 17, shorter than me (as many guys were since I’m 6 feet tall) but he was really cute. Later in the evening, I discovered he was a really good kisser. We met up a few more times after that and kissed some more. I really loved kissing.> One evening, I was at Gene’s house. It was near a railroad track on a side of town I didn’t know well. I'm not sure if I could find it today. We were alone in his room, his parents were in the living room, and his brother was in the room next to Gene’s. He put on a Police CD, their Greatest Hits. Every Breath You Take was playing on repeat. We started to kiss. It was nice. He put his hand down my jeans and put his fingers inside me. After a few minutes, he got aggressive and I asked him to stop. I can’t remember his exact words but he kept asking if we could fuck. I said no, and I tried pushing him off of me. I must’ve said stop a hundred times. Suddenly, I realized he had removed his hand and put his penis inside me. He made the ‘switch’ so fast that I almost didn’t realize it. It hurt. I kept trying to push him off, still saying stop and no. He kept going. I had him in height but he was very muscular and strong. Get off! He finally finished. He immediately started apologizing. “Oh I’m so sorry. You’re never going to talk to me again now. I’m so sorry.” I was kind of stunned. I didn’t say anything. I zipped up my jeans, put my shoes on and left. I passed his parents as I went through the living room to the front door.I think I said something stupid like “bye!” I remember feeling embarrassed and ashamed. I hopped in my little white Ford Escort and sped off. What happened next, or what didn’t happen next, is one of my life’s biggest regrets. For some reason, it didn’t even occur to me to go to the police. I drove around, crying. I wondered if I was still a virgin. I went home. That’s what I did. I went home and I never saw him again. I told my friend, the one I was with when I met him. She told me I asked for it because I was making out with him. She and Gene's friend Tim agreed on that. So Apparently Gene had told his friend about it, blaming it on me. I was able to put the episode out of my head for a while, but it affected me in many ways later on and I didn’t even realize it at the time. Sex wasn’t special to me for many years. I stopped saying no, because what was the point? What I had held so sacred had been stolen from me and I couldn’t get it back. All these years later I feel like I think about it now more than I did when it actually happened. I know now that I tried to forget about it because I felt like it was my fault. It took a lot of soul searching to realize how ridiculous that line of thinking was. I know now that you can kiss and make-out with someone and not have sex. Unfortunately, one of the participants may not care to believe that. I have been in therapy for one reason or another on and off for many years, but I never talked about being raped. I was too preoccupied with how my Dad never thought I was skinny or pretty enough or what boy had broken my heart most recently. Lately I find myself looking at his Facebook page. He has a kid. I wonder if he ever did to anyone what he did to me, and if he did, I hope it’s not my fault for not stopping him. Please tell someone.

Saturday, November 12, 2016

Unsung.

My Mom and I were listening to Linda Ronstadt earlier. Mom was talking about her beautiful voice, and how she can't sing anymore because has Parkinson's Disease. I can dig it. It's like a writer getting neuropathy, no?

I haven't made my mark. I haven't left my footprint yet. If I can barely get out of bed each day, how the hell will I ever get published? How will I ever do anything that really matters? There is no reason to be here. Still be here. Talk about a serious waste of space and resources. I can't even fucking open a bottle by myself.

There are three people who I'm fairly sure still love me; my daughter, my Mom, and maybe my boyfriend. The whole boyfriend thing has to be some cruel joke. I mean, why? Why would he love me? I can't do anything. I can't go anywhere. I think the joke is that he is being dangled in front of me, reminding me of what I am missing out on. I have moments when I am so sure he loves me and it's a wonderful feeling, but doubt is always looming. I can't feel good about anything. It's not allowed.

I want to be right with God, but I know not wanting to be of this world is not right. And I would never make it happen, so I don't get why I am constantly entertaining the idea. I need to accept that some people are put here to suffer, and I am one of those people. I need to stop trying to figure out the hows and the whys because I will never know. It is not for me to know or question.

Sunday, September 4, 2016

Make Me Over

There was a time when I wouldn't step outside without a cute outfit, clean styled hair, full make up, and my nails done. I would bring all my cosmetics and hair products with me to work and school so I could touch myself up throughout the day. These days, I'm doing well if I take a shower. My once long, blonde hair is now cut in a bob style and I have let my natural brunette color take over. I can't be bothered with dark root upkeep (dark roots and blonde hair is a big pet peeve of mine). I still wear make-up, but not to the degree I once did. If I manage to get it on, that's as good as it gets, no touch-ups.

When you feel like pure and utter crap all of the time, you really have to prioritize what you will do in a day. I may have phone calls to make and dishes to wash, but it might be a day when all I can do is coax myself to leave the bed. If I'm hungry but the cupboard is bare, I know it is more economical to go out to the grocery store, but if there's no one around to help me up and down the stairs, I'm going to order a pizza. Each day is a struggle for survival. A struggle to exist, but not to live. This isn't living. Looking after my basic needs has trumped looking cute. I still want to look cute. I feel like I have lost my looks. It's not age, it's sickness. I want to feel good about myself again. I don't know how to do that in my current condition, or if it's even possible. When you're well, you don't know how lucky you are to get up every day, take a shower, put your best face forward and go out into the world. I just want to hide away. I don't want people to knock on my door. If I have to shrivel, I want to shrivel up alone where no one can find me and judge me. No one will tell me I look tired because I didn't cover my dark circles. I just want to rot in peace..

*Note: When I say 'people' or 'everyone,' it doesn't apply to my daughter.

Wednesday, October 21, 2015

Free Falling

Almost 8 months with the boyfriend. He's really groovy and my pain goes away when he's around, but he's not around enough. He travels for work a lot.

The other day I was thinking I need to get stronger. Swim. Something. At least make my legs stronger. They're like sticks from muscle wasting. The neuropathy will never go away, but if I were stronger, maybe I could at least take a walk. It's Fall and I want to be outside. I suppose I could go outside and sit. I can sit OK. Lying down is when I feel my best. Maybe I will go outside and lie on the ground. I'll bring a pillow. Then I change my mind. Today, all I have thought about is how I should just accept that I need to stay in bed the rest of my life. I just need to hire someone to go buy groceries and and bring things to me. As it stands now, I can't do all of the things that people expect me to do. I wish I could get everyone to realize my limitations. I can't cook and clean and take care of everyone. I just can't do it anymore.

In other news:

My daughter and I may be breaking free soon and getting our own place.

I fell two weeks ago and really messed up my knee.

Wednesday, July 1, 2015

I'll Treat Ya Good

I again want to stress how much better I feel when I have a boyfriend. Those endorphins never disappoint. My new guy of a few months is a little older, mature, and I actually LIKE him. I will never again (I hope) just be with someone for the sake of companionship. Who knows how long it will last, but right now I am happy. And my daughter is doing well in school after some hiccups last year with anxiety issues. She is in summer school and will start the fall semester August 17.

Of course, I still have pain, especially at night, but I have more moments of distraction right now. I really want to exercise but I don't know how to get started. I can't even go for a walk because of my neuropathic feet. I have all these grand ideas that never come to fruition. I say I am going to start swimming or join a gym. These things cost money and I am barely making it as it is so I need to stop entertaining those ideas. My boyfriend inspires and encourages me. Even if it's just being more productive around the house, it's an improvement.

I hope this lasts a while. My track record suggests it won't, but I am trying not to think about that and just enjoy it.

I am having another EMG this month. It's a very painful test that determines how damaged my nerves are. My doc thinks it's spreading based on the increased pain in my hands.