Will B. Revisiting
I have written of my disease Ankylosing Spondylitis (A.S.) before to help bring awareness to the little know autoimmune disease. I feel it is time for a follow up. I don’t write this article and make posts on Facebook for a pitty party. My goal is to just bring awareness to which ever disease or illness I am patiently trying to give support to.
Being that I have the insiders look into A.S., it makes it even easier to see the point of view and problems associated with what some of us call a hidden disease. Being in multiple support groups I also get to see the view of the people who help support us as well--family, friends and co-workers.
What I mean by the term hidden enemy is that there are numerous diseases and conditions that effect millions each year that by most outward appearances the individual looks mostly normal. Some such things could be clinical depression, autoimmune diseases, many forms of arthritis and cancer to name a few. With A.S. most people who suffer from this debilitating degenerative disease often look normal up into the final stages of the disease. I have been battling this disease for over 20 years. Some of the tools I use are Cimzia, a biological injectable I self-inject into my stomach every two weeks. Cimzia does nothing to help curb the pain and discomfort of the disease. What it does is help slow the progression down and help block or suppress my immune system down. The black label warnings can be quite severe, so there is risk to taking these biologics. One of which is a risk of cancer from the use of the drug--scary stuff to deal with. Another tool I use is Tramadol to help take the edge off the severe pain associated with the disease. I say edge because on a pain scale of 1 to 10 even with pain medications I am generally at about a 6 on a good day. There is stronger pain medication but I choose not to take those because of the high risk of liver and organ damage. I call these tools because that is exactly what they are. People who suffer from disease and conditions that cause chronic pain are not drug addicts.
Throughout the course of my A.S., my immune system has attacked a great deal of my joints. It eats them away then brittle bone grows over the joints causing a stiffing of the posture and or limiting movement of the neck, hips and spine. Do to this brittle bone growth, I am not allowed to lift more than 10 pounds and I have to be careful about jarring my body or else I could cause micro fractures that can cause infections among other issues. It’s quite embarrassing at times when someone asks for help. I am 6’4 and 240 pounds, so people tend to ask thinking I look health, thaty I would make a great helper. I either have to take the time to explain my diseas,e which usually ends with a look of disbelief or at times even called lazy, most times rather than go through all of that embarrassment I just help the asker. What is not seen later is the days or even weeks depending on the task of my pain and limited mobility as my body try’s to recover. If you ever want to know the nightmare of one of my flares from the disease just sit down with my wife Amanda and she will tell you all about it. With Autoimmune diseas,e another factor almost greater taen the danger of physical labor causing a flare is stress. Stress at even a small amount can cause my immune system to react violently against my body. The third and probably the most noticeable is fatigue--people with immune diseases can have huge amounts of fatigue sometimes lasting anywhere from a day to months. People who are unaware often think as people dealing with fatigue from as “oh they are just lazy” or “they are just antisocial”.
There is so much more I could tell you about the hidden enemy, but I will save that for another day as my editor will most likely already scold me for such a long opinion piece. (laughing to myself)
This is Will B. saying be careful before judging others to harshly. Sometimes they have a hidden enemy.