DDD

I felt so stupid what happened to me on Instagram at the beginning of this year. I only went on the site to follow my favorite country music artist Wille Nelson I am avid music fan all kinds Reggae Rock and country so finding out about Willie on a social media platform seemed normal . I abandoned Facebook in 2020 after a year I found it to be artificial not like the Mighty where people lift you up instead of tearing you down. So I went on Instagram against my gut feeling because I bought tickets to go see him last year and because of my progressive condition I can't attend any concerts anymorre it's been 15 yrs since I saw him in concert. I made a profile for myself and started scrolling or searching for Willie's Instagram post and sure enough I found one but what this dumb farm animal didn't know it was a fake.

I texted back and forth with someone pretending to be Wille and fell for the whole rouse until they started asking me more personal questions and I became suspicious. The whole thing broke my heart you know with chronic illness we only have very few things we can engage in and someone was impersonating w one of my idols that I first met when I was 16 face to face. You can tell by the story I'm over 55 maybe it was my fault for not knowing that fake Instagram Accounts existed. If you read this story thank you for taking the time it's way too long I know #OCD #DDD #ChronicPain #Anxiety #RareDisease #MDD #BP d#PeripheralNeuropathy #bilateralfootdrop

Every day is just another continuation of the pain from the day before. It comes like clockwork about twenty steps into my day the excruciating muscle and nerve pain from a genetic muscle disease. It wasn't enough all those surgeries on my spine the painful recovery and eventually wearing two full leg braces and a cane thought that after a decade I had paid my dues. I'm posting this because mental defeat is one of the main charestics of suicide in chronic pain patients cause let me be clear there are days you want to end it knowing that getting through this nightmare means death anyways because you'll be in pain for the rest of your life.

If anyone ever feels this way get help as soon as you can nothing unmanly about needing help with a game that has no rules. I use many healthy distractions like spending time with mom in the garden or listen to music or look at educational shows on Space Nova love it

Color is our best defense against fate and color comes in many forms Art, Music, and crafts. #OCD #MDD #DDD #ChronicPain #RareDisease #BPD #Anxiety #MuscularDystrophy

I've been at this debilitated state for about 15 yrs several spinal fusions and now I have late onset muscular dystrophy. It's a complicated rare genetic mutation that slowly but surely is taking my muscles and keeping me in chronic pain. My Dr and I searched for a diagnosis for the past three years as to why I was loosing muscle mass and at the beginning of this year a diagnosis was partially reached.

The purpose of this boring prelude is to show how lucky I am to have such a caring Dr one who thoroughly takes the time during each visit. He actually spent time after work to study my case and is frustrated there is no cure or treatment just showing how much he cares.#DDD #MDD #OCD #MuscularDystrophy #Rare disease#Bilateral footdrop#Anxiety #IntrusiveThoughts #

Alot o disabled f people in chronic pain seek acceptance and understanding . I did in the beginning the explanation of why I am compromised physically people who were close to me deserved a type of explanation or so I thought. I'm not one of those guys who thinks misery loves company I deal with my sickness on my own I did have to see a physicatrist for the Agoraphobia and suicidal ideation.

So you want everyone to know and understand what your going through you want to feel validated But you don't have to. One more person understanding your sickness isn't going to make your sickness any better. That's why we have this forum and we can let it all out with people who are in the same predicament and here we can feel validated without over explaining but again we shouldn't spend time trying to get friends and family to fully understand that way it makes it easier to stand strong alone. Just my take on having a chronic lifetime illness the idea self reliance is huge I lost all my friends and even my friend of 40yrs doesn't feel I deserve to be on disability even after I told him I have late onset Muscular Dystrophy.#OCD #MDD #Anxiety #DDD #Cronic pain#MuscularDystrophy #ChronicIllness

I read Brianna’s story about when friends get tired of hearing about your chronic illness, and then a “friend “ texted me and asked how I’m feeling and I said “the same”… but this is
What I really wanted to say…

l have better days and then really bad days where I can’t do anything at all because the pain is so bad or the symptoms are in full force- it depends on the day.
It’s like one day I can pick my leg up instead of dragging it and then the next day I can’t. The pain is horrible and constant- the muscle spasms are constant and my neurologist is talking about a pump for the muscle relaxer medication.
I’m learning a lot about syringomyelia though and trying not to get depressed or discouraged but it’s really hard because it’s a very rare and Besides doctors appointments or being in the hospital I haven’t been out of the house since august 13. I literally can’t go anywhere because I can’t walk. My right leg doesn’t work-I have to drag it more or less. A friend of ours offered a wheelchair but dave hasn’t gone and picked it up.

I have a form for the Secretary of State to get a handicapped placard for parking but I have to find out how to get it. the police department here in WC doesn’t do them but —city—- does but i think i have to be a —-city—- resident. I don’t know how to get it.

Since it ls -SPORT- season everyone is busy doing that and with everything that happened to- husbands NAME- he’s not much help which i totally understand. He gets up at 3:30 in the morning every day. Then goes to SPORT practice right after work and comes home and eats dinner and goes to bed at 8:30. On Saturday they have practice and go over film and he and YOUNGEST SON get home at 12:30 then he takes DAUGHTER to the grocery stores and there’s a few hours but he has to do stuff around the house like the garden, yard etc. they do a zoom meeting on Sundays for SPORT too so literally he has no time and I understand. This is what life is always like due SPORT season but usually I’m included in it. I want to go to the games but can’t. It was such a big part of my life and now that’s gone too.

Someone literally told me if I imagine myself walking my brain will make it happen- Nobody understands or gets this. If I had a stroke or broken leg I think people would understand it better but because it’s so rare some doctors don’t even understand it. My primary care doctor said “but aren’t you glad it’s not MS?” Well of course but this is an awful thing in and of itself.

In addition to my degenerative disc disease (I have multiple herniated and bulging discs in my neck and lower back which is painful and causes sciatica in my legs) and I have multiple hemangiomas (blood vessel filled benign tumors on the spine) in my neck, thoracic and lumbar spine which can cause pain too- and now the Syrinx is located at C7 to T1, it’s 5mm wide (your spinal cord is around 6mm wide) so it’s blocking the normal flow of cerebral spinal fluid which is what is causing all the symptoms. (Pain, numbness and pins & needles that travels over my whole body: arms legs chest face back etc , the inability to use my right leg, incontinence and constipation, migraines, dizziness and vertigo,

There’s literally nothing they can do for the syrinx in my spinal cord other than treat the symptoms. It is interrupting the flow of cerebral spinal fluid and also putting pressure on my spinal cord from the inside out - and causing all of my symptoms. I may have had it since 2021 based on MRIs but it was much smaller and since recently it’s swelled and grown in size (see the MRI image) .

In some cases they can put a shunt in to drain the fluid but it literally fills right back up so they drain the spinal fluid into your body- but my team at HOSPITAL NAME said I’m not a candidate for that because of my degenerative disc disease and in some cases it doesn’t help or makes symptoms worse- it’s not a very successful thing either- sometimes they can do a “decompression “ surgery but they usually do it only for syringes that are really big - but they want to monitor it to be sure it doesn’t grow bigger since it has recently swelled and grown. Sometimes syrinxes have a rapid onset and growth period. They keep asking me if I’ve had a recent trauma like falling down stairs etc and the only thing that I can think of is just repetitive motion at work that one day with all the customers in a row but other than that … nothing has happened. They said that could have flared it up but I truly thought at the time it was my degenerative disc disease and associated symptoms.

I want to use my neurologist appointment in October as a second opinion- and I found a doctor in TOWN NAME that has experience with syringomyelia
but his wait list of 12-18 months out.

As for work- I have no idea if I qualify for social security, I haven’t filed yet for it but I’d rather make money other ways- and not depend on that- sooo…
I’ve been doing BUSINESS NAME because it’s all online and I am trying to keep it going because it’s the only way for me to make money. I’m also joining some brands to be an affiliate/ambassador trying to earn commission on sales (also since it’s online) in a nutshell , I’m trying to make the best out of a crappy situation. It’s just hard because one day I might feel ok like I can manage the pain and the other symptoms and the next day might be awful where all I can do is lay on the couch because of the pain or a migraine or can’t feel my arm or hands. Every day is different and I have no idea until I wake up what it’s going to be like.

I’m really sorry to dump all that on you but I’m so not in a good place at all. I’m not saying it to be a “poor me” person but honestly my life sucks right now.
#Syrinx #Syringomyelia #chromic #PainManagement #Loneliness #Depression #cps #EhlersDanlosSyndrome #DegenerativeDiscDisease #DDD #spine #Chiari #ArnoldChiariMalformation #myelin

Silence

Isolation

A view of a fading sun

Pain Unleashes

Permanance Begun

#ChronicPain , #Depression , #DDD .,#Fibromyalgia , #Autumn