Muscular Dystrophy

The day you find out you have muscular dystrophy might be different for each individual. For me it was the icing on the cake because I already had eight spinal surgeries over the course of ten yrs to address herniated discs. So when my legs and arms started to atrophy my Dr and I thought it was from the surgeries but I was still in pain and getting weaker by the day. After three yrs and three trips to Los Angeles and four Neurologist a partial diagnosis it's never good when the Dr says I have never seen your phenotype before and there is no information on it.

I honestly thought my dues were paid after all those surgeries but I was wrong and I let hope drive me to think so. I'm totally screwed now all my muscles are deteariating and the pain is relentless. What is my take on this? My inspiration to keep going has gotten me far however this development will take everything from you if you let it. The brain isn't wired to handle a 24hr pain cycle so eventually it changes the chemical makeup so now I'm on antidepressants and pain medications.

It's not ideal but I seek pleasure naturally by listening to music or light gardening distractions that are healthy definitely help. I also don't feel cheated on life because the first forty years were pretty good and when I was able I took as much as I could. I also am very fortunate to be taking care of my mom and I live in a beautiful foothill town in the Sierra. Don't let life ruin your whole outlook.🙂#MentalHealth #DegenerativeDiscDisease #MuscularDystrophy #MDD #BorderlinePersonalityDisorder #alodynia #Hyperalgesia #Disability #etc

It's a day to be thankful for the things we do have in life. I am thankful for my Mom and my dog Mayak both I love very much. I am thankful for the beautiful place I live in and the Mighty. Hope everyone has a great Holiday 💙🙂#MentalHealth #MuscularDystrophy #etc

Hi I am not new to the mighty but new to this group and joined to see how other people deal with sensory problems. I can't even touch my own body without it feeling like a stranger is touching me.#Fibromyalgia #MuscularDystrophy #MDD #Allodynia #Disability #FootDrop #CervicalRadiculopathy

Sometimes I look back on some of my relationships, the ones where they already had another boyfriend before they ended up dumping meeven my ex wife, and I think how cruel that actually is. My last relationship i gave it my all she had five kids and I helped her with Dr appointments taking the kids to school helping around her house and even in my condition but I did it for her kids it gave me a sense of purpose . Before I met her I was already disabled with 6 of the eight back surgeries already done she said had no problem with that

The relationship lasted eight months she was only using me until her supposed ex husband got out of jail. All the romance she threw my way and I reciprocated I was in heaven.

Long boring story but I am really starting to question who I am how could I let this woman walk all over me e and not see it coming. I consider myself not to be a dumbass but it wasn't only her i have let people do this to me for a long time even supposed good friends . What makes a human being be so stupid when it comes to being able to detect someone is hurting you? Maybe it's my low self esteem humble people are easy to con but I don't understand why I let it go so far 💙 #MDD #PeripheralNeuropathy #allidynia #dd d#Diabetes #Disability #hyperalges ia#MuscularDystrophy #RareDisease

It's been awhile since I walked without the assistance of my leg braces so long I almost forgot but you don't really. Fifteen years and counting and I am very aware that without them my life would be much worse. At first it's the appearance that bothers you but it soon gives way to being practical I mean am I not going to leave my house without them. I saw a post about mobility aids and how if you need them use them. Don't worry about how it looks or how people stare at you their opinions have nothing to do with your health so when a medical professional tells you it will make your life easier then use them.#MentalHealth #MuscularDystrophy #DegenerativeDiscDisease #Disability #PeripheralNeuropathy #Allodynia #hyperalges ia#MDD #Anxiety

I can barely remember the day it started or maybe I have evolved into some kind of numb punching bag. After 15 years of chronic pain and immobility I am forced to take pain pills ever day. If you can ride this journey without it changing the chemical make up of your brain my hat is off to you. The stigma of taking antidepressants and being on pain pills is something you never shake when we live in a society of ableism any deformities are considered a handicap.

This is why I feel like a fraud my mental and physical wellness are being propped up by medications the real me is probably lost and always will be. However if I don't take the antidepressants my agoraphobia and depression comes back like a freight train. If I don't take the pain medication I can't walk even with braces and my blood pressure (more pills) will go through the roof. I'm stuck on this ride until my last breath because there is no cure for my rare muscle disease each day counts as being upright and not bed ridden my worst fear.#MentalHealth #MDD #OCD #MuscularDystrophy #PeripheralNeuropathy #Disability #alodynia #Hyperalgesia #DegenerativeDiscDisease

When your young you have a idealistic vision of what life should be, go to work and do a good job and you will be rewarded. Then one day you become disabled and now you find yourself fighting for a small stipend and prove to the SSA that you are disabled enough not to work. I had all those dreams of a pain free life even if I have to wear the full leg braces it's better to be just disabled and not in constant pain. I miss the person I used to be ready to explore the mountains with my dogs and go for a swim in the lake. I miss having friends although friendships are hard when society looks down on my disability and I have to cancel plans because of the muscular dystrophy. So I decided to reshape my dreams so I'm not heartbroken when I look into the past and I'm 58 and became disabled at 40 so I have lived 40yrs without major pain so I'm happy I got to spend those years .

So if you find yourself thinking about brocken dreams then it's time to change your dreams 🙂#Anxiety #DegenerativeDiscDisease #MajorDepressiveDisorder #MuscularDystrophy #RareDisease #OCD #disabilty #Allodynia #hyperalgesua

Just some last minute pictures decided to add a white Rose bush I think it's a mini rose.#Anxiety #DegenerativeDiscDisease #MDD #MuscularDystrophy #RareDisease #PeripheralNeuropathy #Allodynia #Disability #MuscularDystrophy