I would be lying if I said my health hasn't taken a huge hit since July. It's odd. I had this idea of what my second time around with this disease would be like. I thought my progression would move just as slow, if not slower, than the first time around. I figured I would have plenty of time to keep doing the things I love, like working. I also figured I would treat more naturally this time around. Using homeopathic remedies and life style adjustments, like cleaner everyday products, detoxifications, and supplements, instead of prednisone and immune suppression. I figured it would be easier because I knew what to expect. That I would somehow handle it better. Unfortunately, my body has made it very apparent, that any idea I had was wrong. I have declined faster than my doctors or I expected.
My lungs have recently been showing signs of disease. I've noticed shortness of breathe with physical exertion and increasing sleep issues... which of course makes everyday life extremely challenging. Sleep for someone like me is vital. My team is desperately trying to get me scheduled for a sleep study to get my Bipap prescription and levels renewed, but clinics in my area are booked out for months. (Apparently everyone truly is Sleepless in Seattle lol) The level of exhaustion during the day has reached a point where I am simply not functioning. I can't focus or stay awake, the bags under my eyes have their own bags, and driving to work has honestly become unsafe. I've had to completely cut out aerobic exercise and have a very difficult time with stairs right now. My muscles ache and I feel myself struggling to get a breath, often resulting in headaches if I push myself too far. My pulmonologist, who is booked clean into mid September, decided I couldn't wait to be evaluated and sent me to my PCP for a six minute walk study. I began to desaturate once we picked up our walking pace - with O2 levels hovering just below 90. They both concluded that my current lung issues cannot wait until mid September and gave me a referral to see one of their mutual associates who can see me sooner. They also scheduled me for PFTs at two different clinics in hopes that one will have a cancellation for an earlier appointment, as well as an HRCT to get a view of exactly what's happening inside my lungs. For the time being I am to, "avoid physical activity above a brisk walk..." Um what? I have stairs into my apartment, I have stairs at work, I frequently go to the gym, and I enjoying being out in nature! My life is pretty much always more involved than a brisk walk.
On the GI side of things, I've been dealing with a plethora of stoma issues. I had to have a large abscess drained on the left side of my stoma recently. Abscesses can be extremely dangerous and must be monitored closely. Thankfully, after the infection was drained the wound has almost completely healed. As abscesses have a high rate of reoccurrence, I am under carful watch. My SIBO has been absolutely intolerable. It took my insurance company nearly 6 weeks to finally approve the necessary medication! Thankfully I've been doing much better since we started the constant dosing of Xifaxan. I am still struggling to gain any weight and am unable to reach above 139lbs, even with 2,000 calories a day of formula. The idea of, "recreational eating" has been almost a complete bust. At this point my effort is in simply drinking more than only water without feeling horribly sick... My team had hoped many issues such as brain fog and hair loss were related to nutritional issues, however, that was deemed inaccurate. My latest blood panels seemed to be within reasonable nutritional levels for someone on tube feeds, yet my fog and hair loss continues. They now believe it is all simply related to this progressive flare I am experiencing.
Pain. Where to even begin. Exhaustion and pain are a never ending cycle. Being in constant pain is absolutely exhausting, that exhaustion leads to more pain, which leads to further exhaustion, etc. Every muscle in my body aches, every nerve is on fire, and every inch of me is screaming. I am struggling to leave my bed every morning, and when I do, I find myself back in it in a few hours. The feeling you get after being up for 48 straight hours, that delirious level of fatigue, is currently my baseline.
After the phone call from my doctor, and the last month of existing in my body, I have realized two things:Everything within me is pushing against these choices. My feet are digging into the proverbially ground, desperately trying to defy what has to be done - but my legs are too weak to hold out. I've spent more time in the last month crying than I have in a very long time. I feel like I've lost again. Lost my autonomy. No matter how desperately I want to, "get out and live a normal life," I cannot force my body to do so. I cannot pretend to continue on like I am not sick. Like I don't need doctors or treatment. I cannot wake up and go to work every day. I can hardly get out of bed let alone get ready, get in a car, sit in traffic, and work an 8 hour shift managing multiple employees. So, to address number one and number two, I will cutting my hours back from 40 hours a week to 18. I am hoping this will give my body enough time to rest and recuperate between work days. I will also be starting treatment; Rituxan. I have done Rituxan in the past many times and feel it is the, "easiest of all the evils" I have experienced, however, it is also highly effective. This is the absolute last thing I want to do, but I know that continuing to work a full time job, as well as neglecting treatment, will only destroy my body faster.
- I cannot continue like this.
- If I want to survive I need to make some very tough choices.
I am miserable. I can only hope that giving myself more time to rest and beginning treatment will improve my circumstances soon. Thank you to everyone who has stuck with me on this crazy teeter-totter ride! For more info and photos regarding my skydive, please check out my instagram @thetubefedwife
