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

Waiting is the hardest part...

I find that I am very impatient. I don't like to wait... maybe this is part of my "planning" problem. I don't like waiting, even if its for bad news... I'd rather just know and deal with it. I hate the unknown. It haunts me, especially now.

I had a CT scan with contrast of my abdomen a couple weeks ago. This was part of my follow up with the GI since I have a history of Crohn's in my family. Crohn's can be linked to spondyloarthropathies, and can even be part of what fuels the arthritis condition in this family of diseases. AS is a type of spondyloarthropathy and so is Enteropathic Spondylitis (which is spondylitis that is a result of an inflammatory bowel disease, such as Crohn's). Both of these diseases result in an inflammatory arthritis that attacks the spine... and many of the drugs (TNF blockers) are used in treatment for both spondyloarthropathies and Crohn's. However, anti-inflammatories (from what I have read) are not used in someone who has Crohn's because they are at a greater risk for bleeding... Here are some stats I found about spondyloarthopathies for those interested... for reference I am HLA-B27 positive. This is from Wikipedia (so take it with a grain of salt)... but it did a good job of showing the family of diseases, how they relate to HLA-B27, and characteristics for these diseases... and all in a pretty chart. :)

Conditions

Condition	Percent of people with the condition who are HLA-B27 positive
Ankylosing Spondylitis	Caucasians: 92%[6] African-Americans:50%
Reactive arthritis (Reiter's syndrome)	60-80%
Enteropathic spondylitis or spondylitis associated with inflammatory bowel disease (including Crohn's disease and ulcerative colitis)	60%
Psoriatic arthritis	60%
Isolated acute anterior uveitis	50%
Undifferentiated spondyloarthropathy (USpA)	20-25%

Common Characteristics:

• They are in relation to HLA-B27
• Inflammatory arthritis, generally sacroilitis and spondylitis 
• Oligoarthritis, generally with asymmertical presentation 
• Enthesis (inflammation of the entheses: the sites where the tendons or ligaments insert to the bone)
• Familial aggregation occurs
• RA factor is not present
• Extra-articular feathers, such as involvement of eyes, skin, and genitourinary tract
• Overlap is likely between several of the causative conditions 

A link to some more information that is not Wikipedia:
http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/spondyloarthritis.asp

Anyways, My CT scan showed some abnormalities. I have inflammation in my terminal ileum (think small intestines)... this is consistent with Crohn's, but not a diagnosis of it. As I have learned through research, and through discussion on the kicks.org forum, inflammation in the ileum can be consistent with AS. Since AS is an inflammatory disease, many patients end up having inflammation in their intestines. Many do not know this inflammation exists because they do not have Crohn's symptoms and, therefore, do not have a CT scan done. Here is an article explaining that Ileitis can be symptom or result of having a spondyloarthopathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

I have had varying stomach issues my whole life, but having a husband with Crohn's and an aunt with Crohn's, I know that none of my symptoms have been as severe as they are in Crohn's patients. I think, after going starch free for a couple months, that I actually have a gluten intolerance and that all this time it has been effecting how I digest foods. I think that it, like every other physical issue, gets worse with stress. The GI even said that my symptoms were not consistent with Crohn's... but that does not mean that I don't have it. Its kind of a curious place to be... If I have Crohn's I truly believe it is a result of AS and not the other way around... I don't believe that I have been secretly living with Crohn's and didn't know until it developed into arthritis. They way I understand Enteropathic Spondylitis is that you have an established IBD and then the arthritis develops... but I am not sure of anything anymore. Both in research and feedback from others with AS... the "gut" and AS are closely related, and so research indicates that an intestinal condition or infection could aide in the development of AS. I do know one thing, having Crohn's doesn't seem to be a better outlook for me versus just having AS. The prognosis seems consistent whether it is AS or another spondyloarthopathy. Either way, I have a disease, or diseases, that are attacking my spine (and possibly my digestive system). My poor body is fighting so hard to protect itself from itself. Being your own worst enemy truly takes a new meaning in this case...

SO, this abnormality leads me to another procedure in which they will be taking biopsies to determine if it is Crohn's or not... fun. From there, we will know if I officially have Crohn's or if this is just some inflammation that it developing in my body. I have also read that taking NSAIDs can create this inflammation in the ileum... so that could be it too? This is what I mean... this waiting, this uncertainty... its BS. I am not sure what a Crohn's diagnosis would really change for me (treatment wise) other than possibly take away my anti-inflammatory... that may mean TNF blockers even sooner than I expected. BUT perhaps it could mean eliminating the NSAID anyways if it is creating the inflammation in my ileum. Good Lord, I will drive myself crazy!

So, I am waiting for my procedure in 10 days and my second Rheumy visit in 13 days. The good news is I should have a lot more information and a long term treatment plan in 2 weeks. I am hoping that this 2 weeks goes by fast and that it treats me well. I am hoping for the best outcome in all this, but honestly... I am not sure what that is anymore. 

I am occupying myself by eating starch and gluten again :) This has been kind of fun, but it has been taking a physical toll on me. It has put my stomach in a bit of a whirlwind and I have definitely noticed more pain in my SI joint (and much more stiffness in my back)... :/ Maybe that is a good thing though! If I can control many of my symptoms through food, well I will take it. Its a much better option than many of my alternatives. I will likely be going on a low starch diet in April, and this time... it will be a long term, life long commitment. Its worth giving up if I can give up feeling like this. 

Other than that, I am really looking forward to the summer. I have so many fun adventures planned and I think I am going to participate in a cycling festival and maybe one or two aqua bike races!!! I want to be active and feel the warmth of the sun on my skin. Overall, the last two months have been an improvement to the months before... I am hoping to maintain that at least for a while. I want to breathe in the wilderness air, feel the breeze in my bike ride, splash in the water, climb mountains, camp, and play. You never know when the simple pleasures will become a lot of effort, so I am going to soak it all in a little longer as I wait for the unknown.

Love, kisses, and peace in your journey...

Amanda

P.S. Please excuse any grammatical or spelling errors... I am too tired to edit. This blog shouldn't be work :)