“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” Walter Anderson
Yes life can get worse, but only if you ask me that question. In 2012 I became a research connoisseur looking up and reading everything I could find AS and ulcerative colitis related. I found support groups on Facebook and started paying attention to what the members were saying. Until then I never imagined all the things these people spoke about could ever happen to me! In early February I started having pain in my sacrum and increased joint pain. This was all new to me. I wasn’t used to having pain in those areas, until now! Around late February I started writing my own blog not so much to share my story but to document what was happening to me…. I had slacked off my NSD and I had run out of my energy drink mix and was in what people in the support groups called “full flare” mode and really didn’t know if I wanted to invest the time needed to write down my life’s saga, but what the hell my sister said it would be very cathartic.
One thing about writing a blog, you never have to worry about trying to “remember” what you have done or experienced:
“March 6, 2012: While out perusing the internet I realized that no one really talked about gut flares. Most people with AS have more pain in their joints, lower back and hips whereas I don’t as much. I do get pain when I am laying on a firm bed but normally my back and hips feel ok. My biggest problem has been my gut. I do think the NSD diet does help and the nutrients do help to keep my fatigue at bay. It is funny how this disease affects everyone so differently. I have noticed lately that my muscles seem tighter than usual and it takes me a bit to get up and get going after sitting for a while. Some of the blogs about AS talk about having to roll out of bed, pain associated with getting their clothes on etc.”
“March 14, 2012: Yesterday was not a good day and I had been feeling pretty good for a few months so this latest flare really got me down. It had been building up and I did go to the chiro but a week to late. He got me back in line but not soon enough and yesterday the hurt really set in. Today I am feeling better but my boss is worried because she doesn’t want me to get to many “occurrences”, which 8 of these will get me fired! So what do you do when you have chronic pain? I know I don’t schedule these days, they just happen. I know they will happen but always hope they don’t. I don’t focus my time and energy on “will today be good?” I just go with the flow. I find that when it does come along just go with it. Obviously my body needed a day off and I wasn’t listening to it so it decided to shut it down for me… makes sense eh? “
In March the “house” came falling down. My boss finally convinced me to get the chronic leave exception at work protecting me from further occurrences. This meant no fear of losing my job when I was out too much. I guess that was some relief and now I had one less thing to worry about because Lord knows I needed this job if anything for the insurance. But admitting I have a chronic illness is disconcerting. Turning in that paperwork I announced to the world that I was not the person this company thought they were hiring, but…. because the paperwork is in they cannot get rid of me either! I am realizing that I am so fortunate that my disease was not so prevalent in its early stages so I could finish college, get my kids out of the house and build my career. I may now have to look towards the future in a different way but my path has not been as hard as those who were stricken with this disease and any other disease in an earlier stage of their lives. I hope I can keep working for another 10-15 years but at the rate this disease is progressing I’m not sure anymore.
I saw the chiropractor more frequently during this time and really wasn’t getting much relief for back and sacrum pain. It was suggested that I take the steroids more frequently. The pain in my right hip and knee were increasing and favoring those areas began making my lower back hurt more. Oxycodone was becoming my new best friend but it could do nothing for my pain unless I took multiple doses. My sleeping was beginning to be interrupted at night with horrible night sweats. One night I woke up every 10 minutes all night long…. Great now I’m menopausal! I got a script for some meds to help me with this and thankfully that worked. The only respite I get is when I sleep; I can’t have that messed up as well. I had several months of normal gut functioning
In April it wasn’t my gut bothering but my back and hips… no amount of preparation can prepare you for day to day pain.
“April 27, 2012: Well spent 20 minutes just crying while speaking to my boss. I have spent 3 days off from work because it hurts just walking to the bathroom. My legs, ankles and feet have hurt so bad that even the oxycodone didn’t help. I didn’t even tell the “Man” I hadn’t been to work because he just thinks all of this is in my head and when he does show some concern I know it’s not genuine. I know I’m in the middle of a massive flare-up, and yes I have had some starch but not enough to give me this type of reaction. Usually the small amounts of starch bothers my gut but my gut has been fine. My body however has not been.”
In June I went on Prednisone full time. Now I’m really not worried about the side effects right? The flare-ups were stacking up on each other to the point I couldn’t handle it any more. By this time I was spending more time in pain than ever and felt like I was at the end of my rope. My ulcerative colitis flares would come and go and even being on a strict NSD wasn’t helping.
I had read about muscle testing for food intolerances in an article and began wondering if I had some food allergies. According to the article intolerances can cause a lot of body aches and pain. They talked about a specific muscle test done by a Kinesiologist, but there were none of those around here. I mentioned this to my massage therapist and she said “do you know how to use a pendulum?” It had been a long time since I used one, but yes I know how. She suggested that I start checking all the food I eat, just asking the pendulum if “it” being whatever I wanted to eat, was ok to eat.
I started to explore food intolerance and found that using the pendulum to determine what I should and shouldn’t eat was quite helpful. Being on a strict NSD means you are limited to foods without starch. But what happens if you have intolerance to the foods you are allowed to eat? That was my problem. Using the pendulum I found that most of the foods I was eating were causing me problems. I was eating a lot of mushrooms; pendulum said NO to them. I was eating nightshade veggies; pendulum said NO. So what was I left with? A lot of lettuce and meat, oh and ice cream, sometimes. So one day I tried the pendulum on my favorite food, tortillas. The pendulum said YES!
The sky opened up and the sun shined through, my word was anew!
I continued to test my foods throughout the summer and did pretty well in the pain area. In August I went to see a biofeedback therapist who validated my pendulum. I had intolerance to a lot of foods, foods I had to enjoy because of my strict diet. She talked me back into taking probiotics and told me to continue what I had been doing. I was now on what I called a modified NSD, eating very little items that contained starch. I was trying to exercise, work in my garden and make it through each workweek the best I could. A week after seeing the therapist and getting back on the probiotics my gut flare returned… Since then I figured out that probiotics and I are not friends and taking them does me no good!
In September we headed off to the coast for a family visit and for the first time in what seemed like forever I had no pain, no gut problems, no back, hip yada yada yada. No pain, no pain, no pain…. It was fantastic. But one week back all hell broke loose. By the end of September I was having the worst flare-up of my life… I had tried to go off my steroids but to no avail the pain was increasing in my sacrum and hips and on good days just my feet.
I continued my research of probable causes, not really knowing which direction the information I was gathering would take me. Everything I was finding was leading me to believe that maybe my whole problem leads right back to what caused all of this to begin with which was that my gut had too much um yep ….candida….
Next… The Candida Diaries
Categories: allergy testing, Ankylosing spondylitis, autoinflammatory, back pain, biofeed back, chronic fatigue, crazy, diet, food intolerance, foot/heel pain, gut pain, inflammation, medications, muscle testing, no starch diet, pain, pain medications, pendulum divination, research, sacroiliitis, sacrum pain, support groups