Maintenance

The human body is a machine. It requires energy and fuel. The body has parts and systems, and it moves. The body has electrical charges and it radiates heat. The body pumps blood and excretes fluids. The human body processes feelings and information. It also puts out information and creates many things. The body is a machine, and just like any machine, it needs to be maintained to operate at its best and highest level. If it is not properly maintained, it will break down. You will have to fix it...

Maintenance... that's where I am in my treatment plan, my discovery, and my journey. I am so happy to be done with the diagnosis part of all of this... I don't want any more scans, pictures, procedures, or new doctors added to my everyday life. I am EXHAUSTED, and it hit me like a ton of bricks this last week.  You know how it is when you tell yourself "Everything will be fine" and you just keep going? You keep putting your body through tests, pictures, and invasive procedures. You drink horrible radioactive materials, fast from food, and wear it down. You clear it out, beat it up, take away food, add new food and its all in the name of "science and discovery." These are the ways to find the answers... and I am so tired.

I do not have Crohn's, but I do have small ulcers in the lining of my small intestine that are likely being caused by my NSAID. Before I had my colonoscopy that confirmed this information, I had to go off of my anti-inflammatory for 7 days. By day 5, I was in a horrible flare. Between my diet being starch FULL and no anti-inflammatory, I was not in a good situation for avoiding the pain. I couldn't walk, sit up, roll over, or sneeze without wanting to break down and cry. I told myself to be brave, to be tough, and that it was almost over. I put my body through so much stress since January trying to confirm my diagnosis and ruling out other diagnoses. I don't think I realized how hard it would be to do all of this and maintain two jobs at the same time. Last Thursday, my body broke down... I woke up with a sore throat and worried that I might be getting sick. By 2:30 that afternoon I felt so ill. My body was shaking from the chills and my entire back ached as if every muscle had been through a strenuous work out. My head was pounding and my stomach went in and out of nausea.... I stayed home sick that night and just laid on the couch with a heating pad. I tried to block out all the pain and sensation running through my body. I tried to sleep, but it was too intense. When Brian got home around 9:00 p.m. that night, he found that I had a 101 degree temperature. I could tell that it had come down from earlier because I did not feel nearly as cold. The next morning I woke up and the fever was completely gone. I felt like I had low energy, but not anything like the day before. I had a 24 hour viruses that hit my body with everything it had and I was too weak to fight it. Fast forward a couple days and I still have low energy with my first cold sore in FIVE YEARS.

My body is sending me a message. I AM TIRED. STOP. SLOW DOWN. How am I supposed to take care of my disease, let alone my everyday well being, if I don't stop and listen to what I am feeling and what my physical needs are? I tried to power through the emotions, the physical demands, and the weight of the disease(s) we were investigating. The funny thing about bodies is, just like a good machine, the will continue to run... even after missed maintenance. You may miss a meal or a night's rest, and just like a missed oil change on your car, your machine will continue to run. You can run this way for a while and everything will still seem to be operating just fine. You may miss some subtle signs that your machine is not running as efficiently as it could be, or that it is wearing down, but its still running... so you continue to push it. You continue to do this until it breaks down and you have no option but to repair it. Why do we push our bodies this way? Why do we continue to abuse the only machine that we have to get us through our future. It is amazing the things we choose to make priority over our health... In my case, I ignored my poor, overworked, over stressed, and WAY over examined body in the "name of health." How does that even make sense? I guess I was thinking about the future of my health, and in the process, I ignored the health I have today.

So, I am dedicating myself to a maintenance program. I am going to go to bed earlier and wake up earlier. I am going to stretch more and make movement an every day priority, rather than the after thought it has become over the last week or two. I am going to get back on a better diet for my disease soon and I am going to rest when I need it. I am going to do things for myself and be done with the poking and prodding. I HAVE AS. I do not have Crohn's and I know that I could still develop it, but that is not an issue TODAY. I am going to maintain my body by moving, laughing more, making time to check in with myself... I am going to continue to take the drug that is proving to help me, but lower my daily dose. I will get occasional blood tests to make sure that the anti-inflammatory is not creating a bigger problem and my Rheumatologist said that he will work with my GI to make sure that the issues in my small intestine don't get any bigger. My anti-inflammatory is not a long term drug option for me, I know this... BUT it is the very minimum treatment that I can be doing, medication wise, for the disease. My Rheumatologist informed me that the drug does not only greatly help with my symptoms, but there is evidence to show that it effects the long term development of the disease... that's why I take it everyday and not "as needed." If I go off the anti-inflammatory I have to consider some other drugs that I am just not sure I am ready to consider yet...

Now that the diagnosis and discovery portion of this is over... for now... I can take a deep breath. I have AS. That's it. I can feel it, process it, and come to terms with it. I can LIVE with it. I don't have to worry about what else it may be or how it is presenting itself. It is a diagnosis that I have, but does not define me.... and now I can work on and address that. I don't have to worry about it being a different type of spondylitis, or that I have Crohn's as well. I don't have to wonder what else we could find to explain it. It is what it is and now I can just work on finding the best way to maintain it. I can figure out what works for me and what keeps me happy. I can spend some time getting to know the new me. The stronger me. The me that won't be defined by a label, a diagnosis, or an antigen. The me that can accept that I have AS and the same me that will prove AS does not have me. It's my time. Time to take care of me. Time to be selfish and properly prioritize my needs. Time to say enough is enough and move on. I have AS... no more guessing, discovering, or wondering... just time to maintain it, control it, and beat it. Time to take care of it and me.

Take care... xoxo
Amanda