DDD

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

Well, I don't even know where to begin. It has become apparent in the last 18 months that my husband of nearly 24 years is a narcissist. He's always been super judgmental (and acknowledges this fact, but has never tried to change it).

Well, we are definitely in a rocky place. Yes, I have a hand in it -- but, so does he. It takes 2 to tango, ya know.

Anyways, over the last year+ the home environment has gotten fairly hostile. When he gets home from work, I've been informed I'm "not supposed to speak to him until he's ready"... but he never indicated when that was. So I did set a boundary there... I told him he can't come sit down next to me on the sofa until "he's ready" because I'll inevitably talk to him. He expects me to just "know" when it's ok and not ok to talk to him (based on his mood - which is ever changing).

Even asking a simple question is met with extreme defensiveness. I was attempting to explain something medical from my doc to him, and he misunderstood. When I said his understanding was incorrect, he yelled "that's what you JUST said"... even though it wasn't. So I simply started over and said everything again. He doesn't listen to me. In fact, we had a HUGE discussion/argument about MY food preferences regarding pickled red onions (I like them, he insisted I didn't). Not 3 days later, he didn't remember the conversation. (He "never remembers" what he's said.)

He was going to therapy, but hasn't gone in at least 5 weeks. He was the one who said he wanted marriage counseling, but is now refusing. What do I do??

#narcissisthusband #narcissistspousalabuse #Gaslighting #Depression #Anxiety #BPD #AvPD #ADHD #Fibromyalgia #DDD #chronicpainpatient #Gastroparesis #Achalasia #Stressedout

#TraumaticBrainInjury I got my first TBI 37 years ago. Had bad car accidents 6 & 8 years ago. People running stop signs.
I have car PTSD and around DV.
This past October I was assaulted by someone I was dating. I was on a vent for 3 days.
Because of the lack of oxygen I now have Hypoxic brain injury. The first 5 months after were terrible. My brain is broken, anxiety and panic all day everyday.
My brain was doing so much better. I was so proud of my self.
Second week of May I was admitted to the hospital with septic pneumonia. Got three breathing tubes on the right side so that one was doing better.
After 7 days I go home. Two weeks later back at the ER. Now it's the left lung which was a mess the first time I was there.
So that ends up being two more times I was hypoxic.
So TBI x2, PTSD, Hypoxia x3. I have had quite a set back brain wise. I'm angry, way confused, sad and really really tired. # brain injury, #PTSD , #CRPS , #DDD , #Fibro

I have been having a really hard time and it’s been a reallly long year for my family.
About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

When I was younger my brother more than once sexually assaulted me.
I don’t know if it actually considered that
I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

So the situation is idkw but after he had his stroke I just couldn’t speak to him.
I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
He has been trying to get in contact with me but I have thwarted contact.

My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

#SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD