My chronic illness journey

Hi, my name is Daniel.

In 2012 I was forced to quit my last full-time job due to a chronic illness that was getting worse and worse. Thus began the single most difficult quest I have ever undertaken: the quest to become well, or something close to it.

The range of symptoms was pretty extensive, and the experience of living with this condition is something that I can’t even begin to explain in a short summary. But I cannot begin to tell you how many times I have had the thought of wanting to die just so the suffering could end.

In 2014, after bouncing from doctor to doctor (none of who could figure out what was going on with me), trying various treatment protocols they suggested (and paying out of pocket for them), I had finally burnt through my savings and was broke. That was when the fear and desperation truly began, something which has never truly let up since.

Thanks to a successful crowdfunding campaign which a good friend suggested that I try, I was able to find the funds to give medical treatment another go. I researched many doctors across the U.S. and finally decided upon Dr. Keith Berndtson of Park Ridge Multi Med, based in the greater Chicago area. That began the next phase of my journey.

After about $6000 worth of extensive tests that were paid for out-of-pocket with the crowdfunding money since I didn’t have insurance, Dr. Berndtson gave me a diagnosis of Chronic Inflammatory Response Syndrome (CIRS) and a possible comorbid infection of Lyme disease based on a suggestive but inconclusive Western blot test.  Prior to this the only diagnoses I had received – back in 2012 – were the vague, umbrella diagnoses of Chronic Fatigue Syndrome and Fibromyalgia which I do not believe are specific diseases in themselves but sets of symptoms that are real but whose true causes have not yet been identified. This was in 2014. It’s now 2017 as I write this and I’m not so sure about the Lyme diagnosis anymore but I am very confident that the CIRS diagnosis was correct. It may not be the only thing going on in my body, but it is definitely one of the main things.

After years of following a difficult and often frustrating treatment process that required an incredible amount of discipline, will, and above all, patience, I have made considerable improvements to my health, though far from where I want to be. I am now holding onto a part-time job, though with great difficulty, and two or three years ago this would’ve been impossible. I don’t expect or demand a complete recovery – not now and maybe not ever – but I would like to be able to at least hold a full-time job someday. I would like to be able to have some semblance of a social life. I would like to be able to spend time on my hobbies and creative pursuits. I would like my day-by-day experience to not be characterized by so much physical pain and fatigue. I would like to not have to constantly worry about my physical survival or to worry about where I’ll get the money to pay for food and rent since I am unable to have a normal job.

And speaking of money and jobs, click here to see what kinds of services I can offer individuals and companies in return for money to survive on.