Am I alone with so many maladies?

@thefemur Welcome to Mayo Connect - interesting nickname you have chosen.

I've been around Connect for some years now, and I never cease to be amazed at the many people who continue to live their best lives in spite of long lists of challenges and diseases.

If you want to read about some of our members, and how they persist, here are a couple places you could read:
https://connect.mayoclinic.org/blog/about-connect/
Or meet one of our Volunteer Mentors like @dsh33782 or @gingerw - nothing stops these two!

Finally, you could join or start a discussion in our "Just Want to Chat" group:
https://connect.mayoclinic.org/group/other/
There is nothing like finding others who have faced challenges like yours and "get it" - a lot of times friends and family are supportive, but don't quite know how to talk to you.
Sue

Hi. I have some niggling issues, with atrial fibrillation being my main nemesis. Thankfully, it is controlled, as is my severe sleep apnea. But my wife is a different story; she suffers from several autoimmune disorders, some of them inherited from her mum...who was also a wrecked shell of a person when she finally let go, bless her. I count myself lucky, first for her intrusion into my life, and secondly that I can be of some small help to her when she is experiencing the worst symptoms.

I can only imagine....

@thefemur Welcome to Mayo Clinic Connect! Thanks to @sueinmn for tagging me here.

Like you, I have been handed [more than!] my fair share of things to handle and juggle. Not long after I read your post this morning, I was presented with a quote I had heard long ago. "Creator hands the hardest struggles to the mightiest of warriors." Yep, true words from my perspective!

Right now, my biggest hurdle is acquiring dialysis fluids that work for me, since Hurricane Helene destroyed a major supplier of these and other critical fluids used across the medical fields. I am also an active cancer patient in treatment, and struggling to keep everything as status quo as possible. Impossible? No. Challenging? Definitely!

What has worked for me is maintaining a sense of humor, advocating for myself, being mindful and respectful towards everyone I meet involved in my medical care. Taking time to research and offer possible solutions as necessary, not being afraid to take an unpopular stand. Are there days I want to just lay in bed, and pull the covers over my head? Yes, but the cats wouldn't let me do that! Being able to be of service to others, in some way/shape/form also helps me get out of my own way, and focus outside of myself.

According to my medical team, I am a complicated case. Blood cancer, daily dialysis for an ultrarare kidney disease, etc. But it is a challenge I have accepted.
Ginger

Ginger, I love your reply. My daughter has been struggling with health and job issues since Covid, and still steps up to help others. Today I was asking if she would be available tomorrow at 10:30am to wrangle Littles decorating cookies. Her response - "I might not want to be but Brina (her 80 lb unofficial emotional support dog) will be standing on the bed with her nose on mine." You and she and many members here are my heroes - you keep me going when I just want to whine and huddle under my quilt!

Hi, @thefemur.
A similar topic came up on a different thread not too long ago, and following is what I posted there.

"I am also one whose doctors have to juggle and balance medications and treatments because of the multiple conditions that I'm dealing with. I can't even count how many times I've been told that I'm a "complicated case." Right now my docs are trying to figure out the best way to manage side effects of two blood pressure medications and need to find a solution that won't hurt my kidney. I go through situations like this over and over again all the time. What works for one condition is detrimental to another. And, of course, a diet that's good for one condition is a no-no for another. I feel like I live in a perpetual catch 22. Well, at least I keep the doctors thinking... and scratching their heads. 🤔"

So, no, you are not alone with so many maladies and compounding medical mysteries. And this has been my situation my entire adult life. It's not always easy to maintain a positive outlook, especially when it seems like there is no positive outlook/prognosis. But I try. Most of all, my faith is crucial and instrumental in helping me to remain positive. Also, every day I acknowledge the fact that, despite all of the health issues I have, "I woke up today"..and that, in itself is a blessing. So, I try to make the most of my life every day and enjoy it as best as I can. I try to keep the focus off of myself and try to help others.

Sometimes it feels like mind over matter because I believe that how we manage these issues, and experience even small successes, begins in our minds. Even doctors will tell you that patients with positive outlooks fare far better than those without. So, sir, you are not alone. There are a whole boatload of us on this ship. So, I say to all of us: Stay positive and joyful...😊💕

Happy Holidays to all!

@my44 One thing that really keeps me in line is the fact I am a complicated case. My oncologist and nephrologist are in good communication to balance out my treatments and medications. The plan we use may not be "normal" but it works for me. And the biggest takeaway is that my team has an opportunity to experiment and trial different ways to look at things, and combinations. I am willing to be their guinea pig, and they get to have more tools in their toolbox for future patients.

Today we woke up to a lot of overnight rain.
Ginger

I'm right there with you but have different medical conditions to juggle.. I have a heart condition(stent placement in 2011), PV diagnosed in 2021 which I am taking 8500 mg of HU per week, intermediate prostate cancer which I have not treated, but am on active surveillance, and somehow without knowing when, suffered a stroke (damage confirmed by a brain scan).. My neurologist said I am an anomaly as I should have experienced symptoms) A minor addition is I have osteonecrosis of my left knee.. Despite this, I exercise every day.. I ride my bike (weather permitting), and swim laps at a health club every day.. All in all I feel very good considering the above.. I often wonder, how long will this last?? I get bloodwork done monthly.. My issue is that I don't want to rock the boat with any additional treatment or medication that could trigger a worsening of any of my conditions.. None of my specialists can really answer the question regarding contraindications of medications or surgery/radiation treatments .. I myself have prioritized my conditions as follows: 1. PV as do NOT want this to morph into leukemia, 2. Avoidance of having another stroke 3. Heart ( currently in great shape) 4. Prostate cancer.. (typically has slow progression).. I guess I am lucky that I currently feel as good as I do and have for the last year.. That allows me to have a positive attitude ...My self analysis is that if my exercise routine becomes more difficult or impossible to continue, I will have to make a treatment decision.. In other words, I am counting on my body to let me know... FYI.. 70 year old male..

Hi, @gingerw.
All my adult life, my health and healthcare have been summed up in that one word: complicated. Therefore, interdisciplinary communication between different specialists is so important. One thing I've noticed since my kidney transplant is that all other specialists are hypersensitive to that fact and are extra careful and cautious because they don't want to do anything to hurt or jeopardize my kidney health. Whereas they used to immediately recommend a treatment or medication, now they take it a little slower and want to confirm that what they want to do is not a contraindication to my kidney protocols. And that's okay with me.
I do like your attitude about being their guinea pig. That's selfless. And I'm sure that others before us were guinea pigs that resulted in some of the tools that our docs are using for us today.

We had a rainy night, too. But it wasn't much.
Happy Holidays!

You make a good point in that most of the time I feel pretty good. Based on how I feel, you'd never know that I had so much going on. It's usually only seeing lab results and diagnostic test results that I have confirmation of my various ailments. And as long as I feel okay, I keep trying to stay as active as I can...although you have me beat in that area. You're way more active than me. I exercise but I don't ride a bike and I definitely don't do laps...I can't swim! 😊

Severe scoliosis, mitral valve going bad, asthma, and ET. I keep moving as much as I can, pace myself to preserve energy, and keep my inhaler and cane handy.

I don't see myself as a warrior, just an old lady trying not to be a burden.

One foot in front of the other, one day at a time, don't catastrophize the future, be thankful for the good days, read and knit the rest, ask for help, pare life down to as many joys as possible, jettison the stuff that wastes effort, offer somebody encouragement every day.