Anyone Diagnosed with a chronic illness that upended their life?

[DanR]

Sorry to hear about your ailment.

I dealt with having to take care of my adult daughter who had Crohn's Disease and Type 1 Diabetes for a number of years. She was feeling ill and miserable almost constantly for a number of years

I hope that there will be successful treatment for your issue to alleviate your symptoms.

[Borderdon]

All of the above are inspiring and thought provoking, thank you all for sharing, there’s a ton of collective wisdom & experience.

[KevWind]

Originally Posted by Kh1967

Thanks, Kev!

Sounds like you have been through a good deal. Glad you are navigating.

I admit, I have been a little judgmental about chronic pain, up until I learned first hand, how much it impacts life. It is exhausting in a way that I never understood before.

Best of luck with your upcoming ablation. Sending good thoughts your way!

Thanks Actually having been in Construction for most of my employment career.
I had prototypical lower back issues =3 slightly distended disc's and that was arguably the most debilitating shooting pain I have endured.
Amazingly even my open heart bypass where they crack open your breast plate was not very painful compared to when my back was flaring up . In fact after the first night after the bypass I was able to go off pain meds, because honestly it was more just dull ache sore muscles than any kind of intense or shooting pain, like my back had been occasionally .
But all in all I count myself fairly lucky

[Silly Moustache]

Yeah:
Sepsis as a child.
Peritonitis age 14.
Lymphatic (?) sarcoidosis - 1983-1993 severe joint pain -ruined my career progression
Heart failure 2006
Cancer 2017.

I'm 51 and I struggled with undiagnosed bipolar disorder for most of my life, finally reaching a breaking point and hospitalization in my late 30s. I'm medicated now and generally stable but it almost completely destroyed me. The serious impacts of mental illness should not be underestimated.

[foxo]

Originally Posted by J-Doug

I'm 51 and I struggled with undiagnosed bipolar disorder for most of my life, finally reaching a breaking point and hospitalization in my late 30s. I'm medicated now and generally stable but it almost completely destroyed me. The serious impacts of mental illness should not be underestimated.

That is quite late - I was 28 when I was diagnosed, but I never sought treatment until things reached crisis point and like yourself ended up in hospital.

[MrDB]

Kori - That's awful news. Rare conditions like that are really difficult to get some kind of effective treatment for. I hope for the best for you.

The emotional/psychological impact of life changing conditions can't be understated. Do as many fun things as you can to keep your spirits up. Volunteer at a charity, even a small amount of time spent doing something for someone else brightens your own outlook.

My own journey started in October of 2018. I went for pre surgical screening for a routine knee replacement. Found out I had an inoperable cancer tumor in my knee of all places. Advanced stage 3. The only life saving option was amputation. So I've been handicapped since then. Learning to walk again was tough but dealing with being unable to do so many things that were routine before was tougher. But you have to go on. Quitting is not in my vocabulary and I doubt it's in yours either. I still play in a band, my bandmates roadie my stuff in and out for me. I have to sit to play but that's a small price to pay.

Best of everything to going forward and I hope you find some significant relief or better yet full remission.

[Kh1967]

Originally Posted by martingitdave

Yes, stage 4 cancer diagnosis last April. Primary cancer is gone after chemo/radiation and surgery. Now I'm back on chemo and preparing for surgery to both lungs to remove metastases. Everything is touch and go. No telling how long I'll have to play whack a mole. Moreover, the pain from the chemo induced nerve damage is wallop every day. So, what do we do? We keep friggin' fighting my friend. Each day is a new opportunity to fight and live for the things that make life worth living. Sounds cliché, I know. But, you don't really understand it until your life is on the line. Besides the usual oncology team, I also see an integrative medical doctor, who works with the oncology team. They do the functional medicine, diet, traditional Chinese medicine.

I agree. Sometimes we just fight to stay in the fight.

I am intrigued by your care team - functional med, diet, and Chinese med. would love to know more, if you are willing.

Sending you good thoughts and good ju ju. Us Chicagoans are a strong bunch.

[Kh1967]

Originally Posted by MrDB

Kori - That's awful news. Rare conditions like that are really difficult to get some kind of effective treatment for. I hope for the best for you.

The emotional/psychological impact of life changing conditions can't be understated. Do as many fun things as you can to keep your spirits up. Volunteer at a charity, even a small amount of time spent doing something for someone else brightens your own outlook.

My own journey started in October of 2018. I went for pre surgical screening for a routine knee replacement. Found out I had an inoperable cancer tumor in my knee of all places. Advanced stage 3. The only life saving option was amputation. So I've been handicapped since then. Learning to walk again was tough but dealing with being unable to do so many things that were routine before was tougher. But you have to go on. Quitting is not in my vocabulary and I doubt it's in yours either. I still play in a band, my bandmates roadie my stuff in and out for me. I have to sit to play but that's a small price to pay.

Best of everything to going forward and I hope you find some significant relief or better yet full remission.

Thank you for sharing your story. You are a testament to strength and resilience.

I am glad you are navigating a new way of managing life. I wish you all the very best going forward.

[AmericanEagle]

Originally Posted by J-Doug

The serious impacts of mental illness should not be underestimated.

I completely agree.
I have suffered with mental illness since my late teens. I am 56 now
and still struggling. It has actually gotten worse over the years, so much so that I’ve been fired from my last 3 jobs due to having frequent panic attacks at work.
My heart goes out to the OP and all others with debilitating illnesses.

[DavidE]

Originally Posted by Kh1967

Wow…you certainly have had some major life changes. You certainly had to change directions.



I appreciate your input, and certainly as it relates to your career. I cannot imagine that was easy.



I am definitely exploring options that can help - I have read a few things about vitamins, and diet that seem to help a little bit. I am trying all that I can, but have not found the right recipe just yet.



I wish you all the best on your journey. Glad you have found some comfort in making music. Sending good thoughts your way.

I forgot to add that arthritis at the base of my left thumb made playing, and even tuning, very painful. I’m about a year and a half post surgery yet I still have pain and my hand strength hasn’t come back. Life keeps throwing up road blocks, but you find a way to break though them as best you can.

[DavidE]

Originally Posted by martingitdave

Yes, stage 4 cancer diagnosis last April. Primary cancer is gone after chemo/radiation and surgery. Now I'm back on chemo and preparing for surgery to both lungs to remove metastases. Everything is touch and go. No telling how long I'll have to play whack a mole. Moreover, the pain from the chemo induced nerve damage is wallop every day. So, what do we do? We keep friggin' fighting my friend. Each day is a new opportunity to fight and live for the things that make life worth living. Sounds cliché, I know. But, you don't really understand it until your life is on the line. Besides the usual oncology team, I also see an integrative medical doctor, who works with the oncology team. They do the functional medicine, diet, traditional Chinese medicine.

I can’t love this enough. I admire your attitude and perseverance.

[foxo]

Originally Posted by DavidE

I forgot to add that arthritis at the base of my left thumb made playing, and even tuning, very painful. I’m about a year and a half post surgery yet I still have pain and my hand strength hasn’t come back. Life keeps throwing up road blocks, but you find a way to break though them as best you can.

I’ve recently been diagnosed with psoriatic arthritis. I’m only 34 so it was unexpected and a bit of a downer to say the least. I seem to be responding well to sulfasalazine though - did the medicine just not work effectively for you?

[DavidE]

What a great thread. We’re not alone in our various struggles.

Here’s something I did that helped me tremendously after my cancer surgery. I volunteered twice a month to play at The James Cancer Hospital here in Columbus at The Ohio State University. The effect of the music made a huge impact on patients, but even more so on family members. I literally saw the changes in their faces when they heard the music. It was my most rewarding gig ever. Music is truly powerful. Use it to your advantage. I’m trying to let us back in since Covid shut us down.

I made this video during Covid for an online survivor’s event and there are videos of me that play in patients’ rooms. https://youtu.be/mziuYPRzRF4

[Matthew Sarad]

The Traumatic Brain Injury 10 years ago became a daily struggle.