Good grief, not another illness blog?!
If that’s your first thought, you aren’t alone. None of us are using up our birthday wishes thinking: “if only the world had another Chronic Illness blog”.
Yet, without a doubt, the best help I have ever received has always come from other patients. It’s the best information out there, if you can find it. How many of us have preformed medical “interviews” of our friends, grilling them as if a Fortune 500 job was on the line:
*What helps your pain?
*Did you have side effects from Drug ABC?
*Have you seen Dr. Y? What are your best tips on how to survive the trip to see her?
Medically grilling your friends is a hit or miss proposition at best.
The patients who openly share their experiences obviously help a lot of people. Yet somehow I was never a blog follower. The one or two I had tried were an understandable venting ground. I didn’t have it in me to read about all the depressing frustrations in being so sick, I was living it.
It wasn’t until I was about to start Ampligen that I used one of those birthday wishes to find vital information I needed, and I found it in a blog. At the time, almost nothing was known about how this experimental drug impacted MECFS patients, a very scary prospect when your body is already completely bedridden, running on empty. I combed the internet for anything any Ampligen patient had ever written about their experience in the trial. The information was mostly Doctors talking about what it could be. I needed to know what it was – directly from a patients perspective. Finally I came across a detailed, highly informative blog a patient kept about their Ampligen treatments. It felt like a life-line, a life-preserver thrown just to me, the desperately needed tether to another person going through what I was about to go through. I was a blog convert. Next I found a blog where the writer found a really positive way to share not only their medical experiences but also the social ones, all those odd situations we often find ourselves in. I had seen the light, we need more shared experiences, treatment results and just general ideas of how to navigate life, not less.
I know there are a lot of blogs out there. So, who am I and how will this blog be different?
- I’m a redhead (a ginger, as we’re often called). We make up less than 3% of the population (did you hear we’re going extinct?) I don’t think I’m on the endangered species list yet but I can get an all out sunburn within 10 minutes in the dead of winter, so right there I’m probably more than a little different.
- I fight… well, the whole list of collected diagnoses would take up too much ink, so lets go with the highlights: MECFS, Fibromyalgia and CVID (common variable immune deficiency – ie: I no longer have a working immune system)… the rest can be a surprise in future posts.
- I got sick with ME/CFS & Fibromyalgia at the age of 11 (and not just “sick” – but bedridden… and not just bedridden – as in I had to spend much of the day in bed – but 99% bedridden… by the fifth grade). So that’s not really typical either.
- I completely understand the devastating cognitive effects this illness can dish out, I think I was given two helpings. Reading and comprehension with this illness can feel like trying to see through a thick fog. I get it and promise I will not write long rambly posts that make you want to throw things at me (I will occasionally make up words like rambly. You take the good with the bad).
- I will not be a downer: Debbie or otherwise. This isn’t a platform to complain about my life (I have family who legally has to listen to that).
Why am I writing a blog?
When your entire world disappears before you like a puff of smoke at the age of 11 and the disease that invades your body impales you to the bed for more years than you can imagine ever surviving, you feel this incredible need… this desperate all consuming need… to take that and do something with it. They say if you can help even one person in some small way, you have made a difference.