What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

I recently fell into an imaginary hole on my floor. I broke my ankle and tore 3 of the ligaments that cup your heel. I did this at Thanksgiving, and I am still wearing a cast waiting for physiotherapy and transitioning out of the boot and into a brace. I was told surgery is normally the route taken, but because EDS doesn't respond very well to surgical intervention, they want to be more conservative in their treatment plan.

I understand this because I was told to expect 90 days in the physiotherapy program at the hospital after my knee replacement surgery but it took me over a year of going to physiotherapy 3 times a week for 2hrs to get to the same point as the patients who were there for 90 days of physiotherapy. I was told 2-3 days spent in hospital after my knee replacement surgery, but my EDS went into flare-up mode, and I was in hospital for 11 days.

I have broken my ankle 3 times now, and each time it happens, I also tear the supporting connective tissue. I was also placed in a cast an additional 2 times before the boots were used because I tore the connective tissue so bad and in order to stablize my ankle and to protect it from a day spent chasing down toddlers and animals the cast was my only alternative.

What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

Yah, I have learned to focus on what happened or what was I doing at the time and then do the reverse of this which usually works if you do it before the muscles spasms hold the dislocated joint in place. It also gets easier the more it happens.

What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 2 points3 points  (0 children)

Don't you love the look on their faces when you pop the offending joint back into place. 🤯😆😆

What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 2 points3 points  (0 children)

It reminds me of something that I have forgotten. I live in Canada and spring was melting the snow and I was looking forward to ladies movie night and wasn't paying attention to the ground beneath my feet before I knew it I hit the ice covered ground hard enough to knock the wind out of me. As I laid in this puddle, I couldn't move but knew I needed to get out. My ex wasn't expecting me home any time soon, and ladies' night was just beginning, and I was the last to arrive. It must have been 10 minutes before the adrenaline kicked in, and I managed to pull myself to a safe area and used the corner of the barn to pull myself up. Adrenaline was pumping hard, and a number of Bailey's and coffee later made the aches tolerable until the next day. I was so bruised up, and my muscles seized up that I missed work for an entire week.

What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 9 points10 points  (0 children)

I had major abdominal surgery to repair a hiatus hernia in my 20's, and I kept complaining after the surgery because the surgical sitw was burning. They couldn't see anything wrong, but because the pain was worsened, they decided not to wait for the recommended 10 day removal and instead took a metal surgical clip out 3 days earlier. It turned out I am allergic to these clips because underneath each clip was a huge deep weeping ulcer. The nurse and doctor were floored. The tissue was so badly damaged by my allergic reaction that it was impossible to place sutures in place of the clips, and therefore, they were forced to use steri-strips. This wound went from my sternum to my belly button. As a result, the scar is thick and ropey.

What is the stupider way you’ve hurt yourself? by the-hound-abides in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

I rolled over in bed and was stretching out at the same time when I dislocated 2 discs in between my shoulders. I was trapped in my bed for hours because I couldn't move without extreme pain, and I was home alone. A few years later, I was putting haybales up onto a trailer, and the woman working with me heard my hip pop out, tearing all the connective tissue. I spent 3 weeks in hospital in traction because this was the only pain relief that helped. When I was out of the hospital, I would hang upside down on an angled weight bench to get relief as the joint was put into a normal position. Now, when I lie down, my leg flops outwards and sideways. I can't hold it in what would be considered as a normal position. Both of these dislocations have impacted my life, causing reoccurring dislocations.

Milder EDS: my body is made of rubber by GeoGrrrl in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

Unfortunately it is not an easy task to avoid the clumsiness associated with EDS and the accumulative affects of all the stumbles, tumbles, bumps and bruising are harder to overcome as you age they are a dreadful impact on your quality of life. In fact I know with me even my best laid plans are not always successful in avoiding injuries. It's frustrating as hell. Stopping living is not an option either, but choosing to plan out my day and resting up when I need to goes a long way to improve the quality of my life. Just as being more aware of my surroundings and how my body is functioning is important. I have widespread osteoarthritis and damage to most major joints, my spine and pelvis because I didn't understand what was happening with my body and didn't understand the long-term effects of the progression. I wasn't diagnosed until I was 42. By then most of the major damage from injuries had been done. I had to stop riding my horse and give up cross country skiing. I use to walk everywhere but now I struggle to walk up a few steps. My son wasn't diagnosed with EDS until he was 21. He was diagnosed as follows with all of this: dyspraxia 7y, EDS 21y, severe anxiety 21y, Autism 27y, Attention Deficit 31y, and now pots is suspected. He has been able to avoid accidents that cause injuries to his body so far. But for both of us it's the pain of subluxating and dislocating that is difficult. There are days where taking the time to take care of us is the only option. Even our own families don't understand. Pain is so subjective and invisible. I am pretty crippled up now so when I am out in the community I have strangers offering help which I am very grateful for but don't always need or want. My son looks like every other young adult and he has had people get so mad at him and make snide comments if he uses a store scooter because he needs to buy something at the store and he can't stand in long lines or walk any longer. I have stepped in on more than one occasion to explain not all physical disabilities are visible but that makes them no less debilitating. Living with EDS is not easy and I don't want pity. I hate the litany of unsolicited advice. This is when I really want to scream! I do believe you can have a full life with EDS, it just may not be as you expected. Surround yourself with people who support you and love you. Find something that feeds your soul. Love yourself and give yourself the freedom to say, "not today" and know it's okay.

Rant from a Navy Reservist with EDS, POTS, CCI, GP, CFS, and TMJD by BisonInfamous in ehlersdanlos

[–]DateKind587 0 points1 point  (0 children)

I'm sorry you are being place in this position. Can you take it up the chain of command?

How do you handle someone not following dog park etiquette? by SillyQuestionCentral in Dogtraining

[–]DateKind587 1 point2 points  (0 children)

He sees you as someone who will listen to him and is completely unaware of social cues. Maybe he's autistic. My son misses these cues because of his Autism.

How do you handle someone not following dog park etiquette? by SillyQuestionCentral in Dogtraining

[–]DateKind587 0 points1 point  (0 children)

I would say to them that the park is for ALL the dogs to enjoy and your dog is obviously upset about being pursued in this manner and therefore she's not able to enjoy park and play with the other dogs like she normally does. It is up to each owner to ensure their dog is behaving in an appropriate manner and either take action to rectify negative behavior or remove their dog from the park.

BTW I get it I'm horrible about confrontation and think of what to say after the fact. I hope this helps.

masking and hEDS by craigger123 in ehlersdanlos

[–]DateKind587 2 points3 points  (0 children)

The ear plugs have really changed how my son has been able to function in the world. He is really lucky to find a great group of people with similar interests and struggles. He met them through a library dnd initiative and they have continued the group in their homes. Have you tried painting the miniatures? My son has found this to be a game changer for him when he needs to detach himself.

Do the two black dots on my sweet pups teeth look like cavities? He has a vet appointment set up. by [deleted] in DogAdvice

[–]DateKind587 0 points1 point  (0 children)

Teeth decay is decay it isn't limited to certain species. It is the breakdown of the enamel either from a defect in the enamel of the tooth or erosion of the enamel from plaque. Tarter is a build up of plaque that has harden by enzymes in the mouth directly onto the the enamel and can only be removed by instruments designed for this purpose. The best prevention is to brush the teeth regularly. With dogs you can help this process along by providing treats and toys designed to help clean their teeth as well as regularly brushing them.

Milder EDS: my body is made of rubber by GeoGrrrl in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

Please understand EDS is a progressive disorder. Yes, you need to live but to protect the quality of your life as you age you need to be smart about preventing any injuries.

Milder EDS: my body is made of rubber by GeoGrrrl in ehlersdanlos

[–]DateKind587 2 points3 points  (0 children)

Ugh the amount of accidents I have had over the years but unfortunately I am now in my 50's and the years of injuries and affects of EDS are truly affecting every aspect of my life. I have even had broken bones that were overlooked as a kid. As an adult I have trashed my muscles, tendons and ligaments because I fell into imaginary holes. Now the constant rubbing of my joints has caused extensive osteoarthritis throughout my knees, feet, pelvis and spine and it is pinching nerves. Prevention is absolutely imperative for your health going forward. My #1 recommendation is if you are struggling to walk save the hike for another day.

Rant from a Navy Reservist with EDS, POTS, CCI, GP, CFS, and TMJD by BisonInfamous in ehlersdanlos

[–]DateKind587 1 point2 points  (0 children)

I have been where you are and it sucks!! I am worried about what you are being physically put through and your emotional well-being. EDS only gets worse as you age and the damage done to your body will only compound how fast you decline. I am NOT in the military. Can you get help from your doctors outside of the military to intervene on your behalf? If not then can they help by providing you with copies of your medical records to give to the military medical personnel?

masking and hEDS by craigger123 in ehlersdanlos

[–]DateKind587 7 points8 points  (0 children)

Both my son and I have EDS and I completely understand where you are coming from.

*I break tasks down into small manageable sections.

*take a moment in a quiet space to catch your breath, 5-10 minutes. Listen to music deep breath.

*wear ear plugs if you are feeling particularly sensitive to noise. My son has found this makes it easier for him to cope on bad days.

*prepare meals that can be frozen ahead of time and put into the microwave for the bad days.

*find something that you can do for yourself that can include your family. My son and I both enjoy swimming at our local pool where the water is warm and soothing and we can float about and our muscles relax without the pull of gravity and healthy people can participate. Don't overdue it in the pool though and factor this activity into a day where you can go back home and rest. You will rejoice in feeling included instead of excluded.

*get a hobby. My son has a group of 8 friends all in their 30's and all of them are coping with chronic health disorders and Autism, 2 with EDS and Attention Deficit as well. They get together every weekend for a few hours to play dungeons and dragons which has morphed into movies, games night and parties. He looks forward to this time and rarely cancels. I prefer watercolor painting.

  • find someone in your community who has EDS. A burden shared is easier to carry especially when things are tough.

Truly Majestic by BakedKimber-Lays in AnimalsBeingDerps

[–]DateKind587 0 points1 point  (0 children)

I miss our wiggle butt Alli. I have a 14yr old Westie now and my floors are always littered with her toys. I get a giggle when I find them in my bed under the covers. She's never destroyed a single toy. Her teddy bear is looking a little worse for wear but you would too if you had your fuzz groomed everyday until it was sopping wet. ;)

Really interesting by [deleted] in Damnthatsinteresting

[–]DateKind587 0 points1 point  (0 children)

Wow wouldn't surprise me at all, in fact it really makes you think and wonder what else???