Living a Healthy Life with Chronic Conditions

[drz]

Has anyone taken a course based on the above book? The first time I took it was a few years ago was to help manage my diabetes and before my diagnosis of Wegs. I thought I would take it again and focus more on GPA stuff this time. It does help remind you of things you know you should do like exercise more, eat better, stay active, try to make your life more enjoyable. The down side for me was it reminds one of lots of the negative feelings like anger, depression, sadness, anxiety, frustration, stress, pain, fatigue, shortness of breath, loss of control etc that seem common to most or at least many chronic diseases when you are first diagnosed.

One person said she heard of someone getting Wegs following a snake bite in a southern state. The person was sorting things after a flood and got bit in the face. The people in my class have a variety of chronic diseases with diabetes and heart disease being the most common.

Most of the things discussed in the class are same as here: problem solving, finding resources, deciding when to seek medical care, managing symptoms, how to work effectively with your doctors, medicine and medical treatments and side effects, feelings about loss of health and ability to function, managing emotional and physical changes and adjusting to a new level of "normal".

[Nancy-S]

Throughout my life I have known people that became chronically ill. I tried to be a good friend and offered service (cleaning, rides, meals). I had no idea, how being chronically ill can create so many emotions...until now. Even in the first few months of becoming ill, I made it through those moments thinking I was moving towards something better.

More than a year later, as I realize "better" may be farther away then I thought, I find myself more and more depressed. That's why I hang around here. If it were not for the forum, I would be left alone to handle my feelings of being alone, and broken. The idea of a program course sounds interesting. Not having the energy to get through the daily basic tasks, makes it hard to think of attending a meeting though. This is where the book would be a good start.

I saw an ENT last week. She said my throat was a mess. Just bright red, inflamed, and clearly irritated. With no signs of infection, she dx with acid reflux and gave me an rx for reflux meds. I don't have reflux, I never have. I know my body and she's wrong. But she wouldn't listen to me, and I left more frustrated then when I went in. This is where the feeling of alone takes on a new angle. But that was Friday, today is Monday and I need to put that behind me.

Back to the point. I like the idea of living a "healthy" life with chronic condition. It's a lot of work, but well worth the effort. If not for ourselves, but for the people we love.

[drz]

The quote of feeling broken really struck me when I read Nancy's post above since I spent much of yesterday thinking about how "I feel broken" and why that is so hard for me to deal with that feeling. I figured out that I generally don't like things that don't work or malfunction and generally gets such items fixed right away or try to repair them or replace them if necessary because things that don't work the way they should upset me or distress me. Now I realize I am the broken item and I can't repair myself or replace myself. I have to learn to live with my new "normal" level of functioning and to enjoy myself and appreciate what I can still do.

One example that came to mind is just the simple task of typing this post. Decades ago before computers had word processing programs we often had to type things very accurately for stencils, formal papers, or even the early programming we did on our first TI-994A computer cause any error in typing usually meant you had to start the paper or project all over. Out of necessity I learned to type very accurately at a reasonable speed. Now I can't even type one line here without having to make several corrections and even after my best efforts I notice my posts often still have several typos in them. I used to be able to type ten times faster and ten times more accurately. It is like that with most things. Every thing seem harder and takes more effort, tasks take longer, things get forgotten,it is much harder to get organized etc which makes me feel "broken" and malfunctioning. I am especially grateful that I am retired from my work cause I can't imagine how difficult it would be to try get much work done under these circumstances. Also I appreciate that computers today have spell checkers and an easy way to correct typos or I couldn't post anything that would be readable to others.

The good news is I tell myself how lucky I am to be able to read this forum by myself and to type a message because I remember when I was too sick and too ill to do so. My daughter would read emails sent to me by others as I did not have the strength or energy or even the skills to even get onto this forum and read anything let alone type any response. And today I can still recognize typing errors and poor writing and do lots of other things too so I am luckier than many. Right?

[Al]

I find this a very interesting thread. It gets to the heart of...several things, including what, when you have a chronic disease, it means to be a successful patient, what it means to heal, and what, in fact, it means to be human. I feel a long-form essay coming on concerning this subject, but that will have to wait. Just got home from a job, and I'm hungry, and I can't remember what else....

Al

[Sangye]

Great thread, drz. I am still amazed at how much grieving is involved with getting a dx like Wegs.

[Nancy-S]

and what, in fact, it means to be human.Al

Exactly! Human means broken, naturally (since no one is perfect). Some people hide it well, others don't. How we perceive our condition is critical. I need you all to know that each one of you comes across as kind, intelligent, and real. Many people in the world don't have half that.

The original post teaches me that I need more to get through this. Although, initial help from medical professionals would be a great start! lol.

[KathyB]

Kudos for mentioning "grieving" -- That's it in a nutshell! I realize since dx, I've been grieving for my former life, physical appearance, daily routine, feelings ... well, you understand. Being "human" provides us with the ability (and opportunity) to grieve, when needed, over life's curve balls. I know how much I love life, WG or not, and will continue working through my grief. Very meaningful thread, you all!

KB

[marta]

Nancy alerted me to this thread (I think this was the one you were referring to Nancy) and also gave me a gentle reminder that I need to come back and say hi to the people who pulled me out of the darker sides of Wegs. I've been lucky with this disease and the pred in that I haven't had too many moments of being super bummed about the lot given to me by the universe or whoever is in charge. I know that this is pure luck, because it could have turned out very differently.

As some of you might know, I've taken on a new project with trying to bring awareness to ALL autoimmune diseases and hoping that just the sheer number of people affected and standing up and showing the world we're here might help push towards more awareness, research and hopefully the discovery of the common thread for all AI disease. I've been talking to so many people with AI diseases - all kinds - and it's absolutely remarkable how our stories are so similar. The desparate search for a diagnosis. The being made to feel like a whiner or a hypochondriac by the medical profession. The not understanding of others how you can feel so terrible inside while looking 'normal' on the outside. The complete loss of energy. The brain fog. The feelings of loneliness and sadness of days gone by in a healthy body. We're all suffering the same.

It's been really quite good for my brain to focus my energy outward instead of inward and know that perhaps that energy depletion might lead to something wonderful for so many people. This is what you all do on this forum daily and I know for a fact that I am a better person now than I ever was before getting sick. I'm more compassionate, more understanding, more interested in making a positive change in the world around me, more loving, full of gratitude for everything that has come my way from family, friends, my community, and even complete strangers. I am lucky! One in 40,000 lucky, but also one in five lucky (AI disease hits one in five). So if you wanna jump on board and we can hit the world all together on February 29, here's the link to the new page I've put together.www.findthecommonthread.com I'm working on about 10 balls in the air - pretty good for a Weggie and hopefully will get a bit of air time on TV and some space in some print media.

I know this wont work for everyone, but if you have energy and want to jump on board, please feel free to do so. I miss you all, and am sorry for not being here as much - it's been several crazy, insane weeks. RTX x2, plus chicken pox scare, plus separation from family for 21 days, plus fighting to get Hana a second shot of chicken pox vaccine (it's always fun fighting with medical professionals to get the right thing done), plus keeping Hana home from school due to yet another chicken pox case (and I have no antibodies despite being immunized) so weeeeeeee.... it's been a super crazy rollercoaster ride since just after Christmas.

[Lightwarrior]

Marta,
I'm still looking for something to make my finger red so I can post on your find the common thread.