Warning: I’m venting.
I am sick and tired of being sick and tired.
I have spent my entire life dealing with autoimmune illnesses, many of them un-diagnosed for years while wreaking their havoc on my life and my health.
I do my best to remain healthy in light of my illnesses. I attend a variety of exercise classes to avoid repetitive motion injuries and to challenge my body in different ways (weightlifting, weight bearing exercises, dance fitness, yoga, rowing, walking, etc.) I eat relatively well and avoid processed and fried foods. I lost over 100 pounds almost 11 years ago and have kept 100 pounds of it off.
Despite all that, my health problems continue to get worse.
Some of it is just age: arthritis always gets worse with age. My hands haven’t gotten any larger, but my knuckles sure like to grow, as do my bunions and every other arthritic joint on my body. And I have some really weird arthritic joints, like one on my collarbone and another on the side of my foot. I think my quest to be unique might have gone a little too far in this case.
It isn’t aging that is making me angry.
It’s all the crap on the internet that tells me that my autoimmune illnesses are my own fault, and if I’d only eat their diet/take their supplement/do what this specific doctor says, that I’d be pain free and living life like a 20 year old again. Supposedly, autoimmune illnesses come from a leaky gut that is caused by a crappy diet that fills your body with toxins…and that’s why I’m sick. Bad Tina…look what you did to your body!
First of all, I had each and every one of these damn autoimmune illnesses by the time I was 20 and had already sought medical help for almost all of them. I spent much of my teenage years seeing doctors to try and deal with what we thought were outrageously painful menstrual cramps. The doctors even prescribed opioids to help with my pain (they did absolutely nothing to stop the pain). Years later I found out that the pain was due to bladder issues and that opioids and other pain relievers are not effective on the pain from this disease, which is what makes that particular autoimmune disease so disabling.
It is disheartening to have spent your life dealing with progressive illnesses that can’t be cured while simultaneously dealing with people and internet posts that tout total cures. I get that Western medicine doesn’t have all the answers. Believe me, I get that really well, since the cure prescribed in 1975 for my vitiligo was to make me take medication that made me photosensitive and then have me sit in front of a sunlamp to induce a sunburn on the de-pigmented spots. That’s right…my doctor prescribed cancer-causing treatments (that did absolutely nothing to stop the spread of the vitiligo) for my disease. Fun.
I’m just tired of being told that my autoimmune illnesses are related to a leaky gut because my diet is filled with processed Frankenfood…when my autoimmune illnesses were so bad that my parents were told to move out of Chicago when I was still preschool age; the doctors hoped that a better quality of air in the open country would stop my chronic bronchitis. We moved when I was four years old, and I had been a sickly child from the time I was born. Apparently, Similac causes leaky gut. Or maybe it was Enfamil.
I am frustrated and angry. I feel helpless to stop the progression of my illnesses and even my PCP is talking about this leaky gut stuff. It’s not that I’m unwilling to try diet-based solutions, it’s just that this has been all 55 years of my life and nothing has changed. Moving me away from Chicago when I was a child stopped the chronic bronchitis but didn’t stop the problems with my lungs. I still have bronchitis and pneumonia way too frequently because I have allergy related asthma (I didn’t get that diagnosis until I was 50…when I was a teenager, the doctor told my parents I was ‘allergic to ozone’ and that’s why I was having trouble breathing during the summers. WTH???) If living on infant formula didn’t change anything, and moving to the ‘country’ didn’t really change anything, and eating vegetables and fruits from my father’s garden all spring, summer, and fall didn’t change anything, and advanced allergy testing and special allergy serum didn’t change much (I am better, just not cured), and the pain-causing autoimmune illnesses just keep getting worse, what the dickens am I supposed to be doing that is going to make it better? What magic food am I going to eat (or not eat) to reduce my C Reactive protein levels?
I am beginning to feel like no one knows what is going on, including me, and that I am being used like a human guinea pig by doctors and internet hucksters, all in the hopes of accidentally creating an impact for a few months so that I’ll proclaim myself cured and make someone else a bunch of money.
I’m beginning to think that the best thing I can do is to not believe any of the pseudo-science and stick with what I’ve been doing for 55 years: rest, exercise, eat healthy foods, and get up and get on with it no matter how crappy I feel. So far, that’s worked. I also think a fast from the Internet might be a good idea.
Vent completed. Thank you for listening.
And while we are at it, please be kind to the people around you. Not all illnesses/disabilities are easily visible and evident, but they are challenging and disheartening at times. And if you are the person suffering from illness and disability, know that whatever you are able to do today is amazing and enough! Hang in there!