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A Look Into A Different Chronic World

** Today’s post is a guest post from fellow Society for Participatory Medicine member and e-patient Alex Albin, who blogs at My Life in the Bush of Doctors .  She’s wondering about something all of us in the DOC should know about, burnout.  I thought it would be good for all of us to hear of the burnout that other chronic patients face.  Take it away Alex!

I am wondering if any “epatients”  out there face burnout? Do you ever get tired of being on top of the ball? or on top of your doctors? Your bills, your EOBs, disability analysts, and all the meta work around being a patient, especially for those who, I would say are “chronics” like myself? I guess I want to find out that I am not alone. There are days, now months I just want to throw in the towel and stop fighting for best care, or making informed decisions in the face of very unclear choices and success rates. I am kinda done. My journey started when I was 19 …I became an epatient when I was 37, at 44 I had to give up my publishing career,  I am now 49 and 17 surgeries deep and counting and lots of Physical Therapy to keep my bones from collapsing,  keep me mobile, and provide relief from the agonizing bone pain I live with daily, and I just wonder what is the point?….where do you find that extra push….in the face of significant uncertainty?

Even the Top Drs. in their field make educated guesses to manage my condition, everyone has a different idea. Mostly we have made good choices, but there have been some not so good ones and a few big misses. On the whole my medical team has been stellar (especially my guys in Colorado) but they too are not sure of the best approach. The recovery from the surgeries have ranged between a couple months up to 1 year.  I have tried alternative medicines, I have criss crossed the country getting 2nd to 3rd + opinions.  We even considered Korea, where a Dr did evaluate my case and told my primary attending Dr that the condition was too far gone. I have painstakingly become familiar with medical research in my area around the world. Tho, to this day, the etiology of my condition is very little understood. And, it has nearly completely consumed my life.

Right now the struggle is to deal with a condition called “end of stem” where the titanium stem from my hip replacement is fracturing my femur from the inside out. The options are slicing my femur in half (longways) and digging out the stem and hope we do not fracture the femur and put a much long stem in. (that’s a 12 month recovery 80% success (very very few cases)), wiring binding a cadaver femur against my femur, or, do nothing. There are days I seriously just want them rip off my legs and either get me some cools wheels or the awesome bouncy fiberglass legs. It’s a feel good feeling.

I have not successfully found a support group for my condition, that has not used a lot of prayer. I have become cynical as a result of support groups. But, I would like to know how people in this group have handled overcoming burnout, if in fact you have experienced it. I am sure someone has. I am not looking for pity etc…just some practical advice from a group of people who probably have been there done that.

** Thanks Alex for a glimpse into your world, it is certainly different than what mine looks like as a diabetic and no less challenging it seems!
  • Such a powerful post – thank you Alex. I know I totally deal with burnout. I don’t necessarily have any magical answers, but it’s definitely a part of my life.

    One thing that helps me is to read and share experiences with others in the diabetes online community. I know I’m blessed there, in that there are so many people to lean on. Hopefully we can start to spill that support over the chronic condition boundaries somehow.