Monday, October 20, 2014

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!



53 comments:

  1. I love the idea of fun as the best medicine :) I agree. Thank you so much for sharing!

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    1. Laughter is always needed especially on the worst days

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  2. Oh, Birgit, I'm so sorry you've had to suffer since childhood! That's awful. I completely understand about your pain though. I'm on Cymbalta myself for the neuropathy secondary to my brain hemorrhage and Fentanyl patch for the rest of the pain in my body.

    Thank you so much for sharing. Gentle hugs to you and I hope you have a wonderful day. Eva

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    1. What is not normal to others becomes normal to one who is afflicted. With pain-it becomes the norm

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  3. I'd never heard of it before. Wow, so many things that could get you down and hamper your life. But you have the right attitude, Birgit - have fun!
    Thanks for participating in the blogfest.

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    1. Never surrender! :) Love that movie

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  4. What you offered here was amazing - it's always good to share your story and try to help others battle on. Never give up! This was an amazing post.

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    1. Thank you so much:) Sharing always helps

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  5. Birgit, you sound as if you have a great attitude, which I am sure helps you in dealing with the disease. Thanks so much for sharing.

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    1. I think it does, I have my days but, overall, I am happy

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  6. I had heard of this but didn't know much about it. You have an amazing outlook. Best wishes.

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    1. Few have heard of this so knowledge is key and thanks!

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  7. Hugs to you my dear friend. I'm the last person to advise against modern medicine. If it helps, I say go for it. All things in moderation is my motto. As you know, I get migraines and when I HAD to work, I took fiornal on some days. I had to have something to get through the pain when my abortives didn't work. Now that I don't have to work, I don't take narcotics but lemme tell ya, I wouldn't hesitate to ask if I needed them. I love your optimistic attitude. I truly believe that positivity helps heal. Laughter is a great form of medicine and when you can find it, embrace it. Go You!! Thank you for sharing this with us.

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    1. Oh I go to a naturalpath who has helped. My immunity is much better and the pain eased a bit with the natural medicine. Any little edge to take the pain off is a good thing

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  8. Yep, doctors have their heads so far up their arse the only thing they know how to do is give you anti depressant pills. Pffft to that. Been through and still going through the ringer here, so sure know all about the pain crap. Fun does help a lot though.

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    1. Pain sucks and when Dr's prod and poke you and then ask about your family life and wonder if you are "putting it on" is the time I want to take their lower lip, put it over their head and tell them to swallow. They go by what they see not what they can't see. If they can't see it, many then say depression or fibromyalgia or stomach cramps. A-holes. There are some who do listen and the key is to persist.

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  9. Wow! Hugs* Sounds like you are a resilient person and I'm glad you face life with humor.

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    1. The way life works, humour is always needed.

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  10. That's a lot to deal with. I hope you have access to a pool. If it was the only exercise I could do, I'd be in it every day.

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    1. I do have access but when the pain is really bad, I can only rest. I have been told by the arthritis society, my naturalpath and the physiotherapist. When I come home from work I am often so exhausted I have a hard time to go during the week. I try to get to the pool twice a week

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  11. While this sounds like it has sucked for you this is fascinating--I'd never heard of it. I was a flexible kid, but within normal range--I always thought the super bendy stuff was cool. I had no idea there was an associated disorder.

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    1. I always thought so too and once, when I was a teen, I bent my back all the way and had my head look out through my legs like those little Chinese girls. I was stuck for an hour. I found out later that many of these girls suffer later on. Not all flexible people have this disease but being double-jointed is a key. I have given myself severe whiplash backing out of a driveway. I knocked out 3 ribs and my shoulder when I bent down to pick up my hairbrush and other things...not fun

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  12. I've never heard of this, but it sounds as if you have a very positive attitude, which can go far.

    Best wishes and keep smiling :)

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    1. Thank you:) I believe I do...most times

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  13. This is horrible! I'm sorry you suffer from this condition. I agree with Mark though, you have a very positive attitude about it.

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    1. It sucks especially that I don't swell and Dr's don't believe me except a few. You have to laugh at the crap because that is what it is

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  14. I'd never heard of this before. You sound like you're managing the very best you can. I do agree that attitude is an essential part of our health care. You've got one of the best outlooks!

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    1. Thank you so much. It is a rare disorder so few know about it. One always needs to laugh even when the day sucks. I watch a good funny movie then

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  15. I didn't know you had this problem, and like everyone else above can only praise your positive attitude and the way you rise above it. You seem to keep smiling!

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    1. Thank you so much. One of the reasons I love your blog are all the places you can go to and walk to. I cherish that

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  16. I sympathize, but I've never known much about this disease. There seems to be many diseases and syndromes which we know little about and that includes the medical profession. My daughter has a rare digestive disease and has had for 11 years or more, suffering for days not being able to eat, and barely able to stand. It's hard for her to have a normal life, but she keeps trying. It's one of those invisible diseases that others can't see hence they are skeptical. I try to support her as well as hubs who recently suffered a heart attack. It's tough, but I try to take the long view. Take care.

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    1. This must be so difficult and you carry a huge load as you are the main care giver in the family. You have a lot on your shoulder and I hope you can find some time for yourself as you need it for your own strength

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  17. Thanks for the education, BB. I'd never heard of this condition. You're inspiring, and you're right about the main ingredients needed to survive and thrive through any hardship like this: persistence; a good, caring doctor; and laughter.

    Take care. xo

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    1. I love it that you wrote BB. My old boss called me that:) Even when I want to bitch and I do:), I still want to find some good somewhere even in a stupid comedy.

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  18. I am familiar with the name of your affliction through my medical typing, but never knew what it all involved. I am sorry you had to deal with it as long as you have, but I am glad you take the attitude that fun is part of the best medicine you can do for it. I agree it is important to advocate for your care and a diagnosis, especially with the rarer diseases or illnesses out there. Thanks for sharing!

    betty

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    1. You are one of the few who know of this! One needs more people to know about this. My own Doctor, who is good overall, does not think I could be disabled. If I didn't have my desk job and had to work in retail or manual labour, I could not do it.

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  19. Ouch! I had no idea you go through this. You're always so positive! This sort of thing makes me wonder if medical marijuana being legalized would be a good thing. The brownies, of course! I don't think smoking anything is good for the lungs...but if the edibles or a pill form could ease the pain... I read they've taken out the drug element of it and have isolated the part that just eases pain, so there might be help on the way.

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    1. Oh I believe it would help and I would never smoke it as I was told I have a sunken chest (by the specialist who diagnosed me). I am surprised since I am no A cup but that is one reason why I can't blow up a balloon. Anyhoo I totally agree and hope it gets legalized soon

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  20. Birgit, there are just so many things out there, aren't they? I like the idea of medical marijuana. Anything to help!

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    1. There is and so many we have no idea what to do about it but I am waiting for it to be legalized. I am too naïve to know where to find some on my own

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  21. I'm so glad you wrote about this! I happened across this when researching issues my daughter was having. She is insanely flexible. In fact, she was a delayed walker due to the flexibility. Not once have her doctors mentioned this, despite always discussing her flexibility. I'm very flexible and don't break bones, but do easily get sprains. But I'm not as flexible as my mom or my daughter, and I'd been wondering if it could skip a generation. I suspect it did, and that my mom and daughter have it. I was researching this about a year ago, then got busy and lost track of what it was called. I was just looking into finding it again. She complains about her feet and legs hurting whenever we go hiking or walking. Thanks for posting!

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    1. Oh please look into this. Spraining is constant and dislocating is as well. She will need good shoes so be prepared to pay and realize what kind of shoes she needs. Those regular running shoes I could never wear because it was constantly hitting at my ankle bone

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    2. Thank you for those recommendations. I'll look into it!

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  22. Never heard of this. That's what is so great about this blogfest. I'm on a medicine usually used for depression but prescribed for pain from severe osteoarthritis. It helps some. Here's hoping others will benefit for your sharing this info.

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    1. They usually prescribe this medicine for pain sufferers and it does help some. Thanks

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  23. Arthritis society... I did not know that one. I'll pass that along to my mom (who also has it, but not to the extent that you do). I know all about mysterious bruises (or not so mysterious, like getting blood pressure checked), joints that go out for no reason, and needing comfortable shoes. I'm so lucky I did not inherit this from her. (Neither of her children did.)

    Take care.

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    1. Oh yes, please tell your mom about the Arthritis society. She will get some help from them and some exercises she can do at home

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  24. Hi Bigit, I have to admit I've never heard of that. These posts such as yours are so educational. It would be difficult to say the least not to be able to participate in such activities like biking and running and lifting.

    But having that attitude of just having fun is key. Enjoy life to the fullest regardless of the circumstances!

    Thanks for participating in the Blogfest. Hope to see you again for next year's event!

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    1. It is rare but glad you enjoyed reading about it. Attitude is the key in so many cases

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  25. It's bad enough having to live with chronic pain but I really do think it complicates things when you have a rare disease. I have MS which isn't that rare and have survived 2 different cancers which also isn't that rare...I agree with you that finding a good doctor is the most important thing. The first 4 neurologists I saw after being diagnosed with MS told me I'd never walk unassisted again. I haven't even used a cane since 2003.

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  26. Hi Birgit - I had heard of this .. but you've certainly explained your symptoms, while acknowledging there are likely to be many others. Glad you're coping ... and as you mention attitude is a key, as is keeping that positive attitude and laughing at life - keeping those endorphins high.

    Thanks for including this - Hilary

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  27. Birgit, you're Wonder Woman in my eyes. Your bracelets are called persistence and positive-thinking.

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  28. You are really amazing, you know that. To live with such positive outlook and to spread so much happiness and cheer around even when you live with so much pain is a unique gift you are blessed with. Be well, and keep smiling always.

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