Survive & Thrive

 

The blogfest, created by Alex J Cavanaugh, is meant to bring awareness of disease prevention and early detection regarding medical conditions that may be averted or treated if caught in the early stages. Our desire is to motivate people to go in for early screening, and if a condition is caught early and treated, then our world just became a little better place to live.

The topics are wide open. You can post about a particular cause you support. Or you can share a personal or family experience that is near to your heart. What’s great about this Blogfest is you can inspire people to take care of themselves and their loved ones early enough to make a difference in their lives.
Want to bend like a Rubber Chicken? Want to be asked if any family member was in a circus? Well I have the disease for you! The fun thing is you are born with it, few Doctors are aware of it, there is no DNA testing for it (yet) and no blood, urine or stool sample will ever reveal it. Yes, YOU are special! Doesn't it make one feel warm and cozy? There can be many variations to it and the Vascular kind can shorten your life span to a mere 50 years or so. What am I talking about....Ehlers-Danlos Syndrome, That's what!

There is the Skin Extensibility, Tissue Fragility and the Joint Hypermobility. I suffer from the Joint Hyper-Mobility. Now This is the most common form and thankfully, for me that is, if I have this type I can't have the tissue type which shortens your life span. I am glad I am not that special.

There is no cure and there is no drug that can stop it, cure it or delay it. You are born with it and it is genetic. One of your parents has it or, I found, it can skip a generation so one of your grand parents could have it. I also believe there are different severities. I can no longer fit into a box....I used to but not any more.

What to look for: I am going by personal experience and I am very hyper mobile so please note I can not stretch my skin like some can. I was always the kid that could pull her fingers out of their sockets ( still can) and I could bend more than most children. I could never break a bone no matter how much the bullies tried to. Shoe hunting was horrible for me and my mother because my joints always felt like they were bruised.  I was weaker than most, hard time playing any sports (not that I cared to).

Teenage years-My feet would feel like burning after walking a fair distance (I thought that was normal). I could not lift myself up to get into a window, Frequently sprained my hands, fingers, ankles. I would dislocate my jaw when going to the dentist. I took longer than most to heal and I do bruise easily.  Teeth horrible. Why? The body does not produce collagen (helps harden teeth) which is the binding agent and taking collagen does not work because the body can't process it.

Pain is the huge issue and can't do most exercises. No weight bearing! Will dislocate your joints. No biking, running, lifting, or anything repetitive-this creates more scar tissue which creates more pain. The only exercise is gentle swimming and gentle walking but no marathons.

Pain-how to describe this feeling...well, it increases with age ...I am feeling so warm and cozy. Ok back to the pain-It is constant and attacks every joint and I mean every-jaw, hips, knees, elbows, fingers, toes and it feels like a constant abscess tooth ache. There can be sudden burst of sharp pain anywhere in the joint too.

What to do? Finding a Doctor who knows is key and one of the most difficult. Research and find out which specialist is near you. A geneticist can help too but also remember that most feel it is a child illness and forget these children grow up and still have it and it gets worse. This has been my main struggle-A good Doctor who listens and knows about the disease and will not try to tell you that you need anti-depressants. (that is when I picture the Dr. being smacked in the mouth with my fist).

Go to the Arthritis Society as they are aware of this disease and can give you insight on what to do and not to do. Physiotherapy can help teach you some non evasive exercises to do.

Pain medicine helps. I know, one should take herbal and all that and I do and the naturalpath really helped but pain medicine is the only thing that can keep me functioning. Do I like taking it? Nope but enough already with mind over matter bullshit! The pain is severe and if you have it 24/7  where you can't even open a jar(haven't for years) due to sharp pains telling you to stop, take the medicine. I am on Cymbalta which took the pain off my feet (no more sharp glass walking feeling). I am on Tylenol #3. I don't want to be on this but I have tried many other ways. I need to work (thankfully desk job) and I need to live not exist. Find out which medicine works for you. I feel it constantly keeps the nerve endings on high pain alert, hence why Cymbalta and other type of medicines for depression may work for pain. Don't let the Dr prescribe medicine thinking you are depressed. If he doesn't tell him he is an ass and walk out proudly.. I did, felt great, Like Tony the Tiger:)

The best medicine....Fun! The bright side approach. The power of laughter and happiness truly helps. This is often what gets me through. A positive outlook helps and keeps me persisting in not stopping. Persistence is key and a positive outlook is key. I love beautiful things and surround myself with that. I love great films, I love crafting, I love nature and animals and family and friends. Don't stop living and dance, just not wild like I love to, I knocked out my hip once doing that.

I wish there is more I could offer. A great doctor, pain medicine (for my hypermobility) and don't over extend your joints. I had no idea when I was young so I lifted, worked hard (sawmill) and thought everyone had this pain. I negated it-don't! Persist, tell Dr's who don't listen to screw off and find one who can send you to the right places. Never give up, Never surrender!