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CatchMyPain Community and Pain Diary App to manage chronic illness

Intro time? New to forum

Jan 19, 2017 10:54 AM

I've been on the app for about a week now, and have commented here and there, but thought it might be time for an introduction. I apologize in advance, I can be long winded.

I'm 36 from Indianapolis, a stay at home dad due to my condition, and a former chef. I also majored in history and philosophy, so you can see why I might talk a lot. I have (almost) 5 kiddos, with the 5th due next month. The oldest is 18 and about to start college. So you can imagine I had a pretty busy life until recently.

Three years ago I was diagnosed with Syringomyelia, stenosis in 7 vertebrae, and 2 pinched root nerves. It was causing me intense pain and bouts of weakness and fainting. I was eventually hospitalized for 2 weeks and had to learn to walk again. My doctor was sure that losing weight (sound familiar?) would help. So I lost 50 lbs, and was able to continue my Chef career for another two and a half years, with some minor accommodations.

Last May, my wife noticed a visible bulge in my spine between my shoulder blades. That sent me back to the doctor and eventually back into the mri machine. It was discovered the scoliosis was due to bulging discs, so I was referred to a pain clinic and more tests. In December I was hospitalized due to increasing symptoms. I had been pushing myself through the summer with the intent of getting into the best possible shape, but by winter I was losing balance and unable to sleep. I was assigned a new neurologist, who after reviewing my medical history, including my list of strange injuries in high school, sent me for genetic testing for Ehlers Danlos.

Good news, I know have a good comprehensive diagnosis that explains all my symptoms and what may have caused my issues. Bad news, I now know the prognosis. I've gone from running 4 miles a day to using a cane in six months. As you can imagine, that's a bit of a mental blow.

So that's my story. My daily struggles are with pain, weakness, and staving off the emotions and depression. I'm hoping being part of a community like this will offer me new perspectives and a caring space to be vulnerable.


Jan 19, 2017 11:31 AM

Welcome to the community Adam. Sorry for your pain. Congratulations on new baby you have coming. As you might know by now we come from over the world. So we come on at all times of day. You can search through the older topics to answer some of your questions.

Jan 19, 2017 11:13 PM

Hi Adam and welcome to the crazy family. Congratulations on on your bundle of joy coming soon. There is a wealth of knowledge in the community

Jan 19, 2017 11:36 PM

Hi Adam. Welcome congratulations on your 18 year old going to college. That is a huge accomplishment. And, of course, your new baby. What a joy. I'm sorry you are have so much pain, there is nothing worse. You will find a lot of good people here to lean on for support at any time. Both you and your whole family. It's not just you alone. They are going through it too.

Jan 20, 2017 6:32 AM

Hi Adam and welcome!
Congratulations on the new little one coming. Sorry you are having such a hard time with it. Its not easy with all the conditions. We are here for you xx

Jan 20, 2017 9:13 AM

Hey Adam, welcome to the looney bin!! Congrats on your 18 year old going to college and the news of your coming baby. I know it's hard to deal with chronic pain and take care of your family. You've definitely come to the right place for support and information. If you use the little magnifying glass thingamabob, you can check out older threads and find much information. Wishing you well and welcome aboard.

Jan 27, 2017 12:37 PM

Welcome to our community family Adam! Congrats on your 18 yr old's accomplishment & your upcoming bundle of joy, & the other children you have! Sounds like you're dealing with a lot, as are we all. But you're in a good safe & caring place to vent, cry, ask questions or for support, and find suggestions, tips & other ways to learn to cope & live life. It's important to live and not let it kill or will to do so. There will be good days, bad days, & extremely bad ones. But that's why we are all here, to help each other get through by sharing & caring. We even share successes & laughter, hobbies and such, to break the monotany of chronic pain.

Although I've had several chronic issues for 15-30 years, my life changed drastically in 2010. I quit work to recover from major surgery, but unfortunately I've been riding a downhill runaway health train since, gaining new diagnoses yearly. I also walk with a cane, walker or even ride electronic carts now. It took me 4 years to accept I'd never work again, and put in for disability. I'm waiting for a decision from my hearing. My latest 3 dx put me in a severe mental funk over the holidays, but I'm doing much better now. I try to stay positive and think of my blessings instead of the losses in my life, sometimes it's easier said than done. My purpose of telling about myself is to let you know that you aren't alone and we all understand. It's also to share that learning to deal with the changes and learning to cope comes in steps; for example, anger, grief of loss, acceptance of issues, chosing to fight & go forward. Just know that most if not all of us suffer from depression &/or anxiety, as a result of trying to deal with our health issues. Hugs love & prayers as you learn to cope and find support to get through it! 🙂💕🙏🌸

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