What's something you wish you were told when you were diagnosed?
We learn a lot from our diagnosis through experience, trial and error, and sharing information. What's one thing you wish you would have been told when you were first diagnosed?
I wish I would have know about this web site when I got my as
Oh friend. Having support through a caring community is truly invaluable. I'm sorry there wasn't a community like this for you at that time. Thanks for being here now. How did you manage? How are you managing currently? Wishing you respite and healing. Rebecca (team member)
I wish they told me that inflammation effects your heart arteries too. You need to have a heart healthy diet and get a cardiologist to monitor your heart. I learned the hard way after a major heart attack that almost killed me and changed my life!
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I'm saddened to hear of your heart issues.
Chronic inflammation can certainly be harmful to your organs, including the heart. It can cause blockage and damage to your heart and can also disrupt the heart's electrical system.
How are things going today?
~Doreen (Team Member)
The whole picture
- having a full picture of this disease could have answered a lot of my questions as well. It's difficult to plan for your future when you've got no idea what happens next managing this chronic inflammatory disease.
I think they don't tell us the whole picture is because this disease is so different for every person. Or maybe it's that they really do not know the extent of the hardship it brings to each one of us who are diagnosed. Though I feel I should have been given some idea of what to expect, I do know my physicians/specialists are there for me, to support me through the rough times. I know of many who don't even have that. For this I am grateful.
I certainly hope you are being supported in some way or another. Sending strength to endure. Rebecca (team member)
I wish I was told the truth in Madison WI on September 2010 when my then neurosurgeon consult told me I had AS, and it was growing over my lower spine & that's what was causing my pain. I was 46, however I'd been told it's likely what I had 10 years previous, I was just in denial until I couldn't ignore the pain or kill pain with ibuprofen. AS has robbed me of my life,the Dr's played it off like it was no big deal back in 2002, they offered no information on what it was other than my spine growing together, and I'd be just fine. I'm not bitter, I actually advocate for several people I've met whom had new diagnosis of AS, and I told them of this site and of My Spondy. I'm disabled at 50 back in 2016 after an auto accident busted that growth over my lower spine. I thought my pain was the worst it would ever possibly get, I was wrong,after the accident it was quadruple for about 3 years. Then I was diagnosed with Fibromyalgia in 2019 on top of my AS, DDD,Arthritis, glaucoma watch list last 8 years. I can only say this, I am glad each day I awake, to live yet another day, life is a gift.
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I'm sorry you are juggling so much.
Insurance issues can be so frustrating. My heart goes out to you.
In addition, I so admire how you don't let anything bring you down.
So many of us can benefit from your incredible outlook.
Thanks for being a part of this community.
~Doreen (Team Member)Thank you,
I have been well. This summer was difficult with the extended period of high temps here. I am glad to feel the cool air in the morning walking the dogs. I hope all is well with you and yours as summer ends and fall begins. Thoughtfully, Rebecca
