NO LUPUS!! My Rheumatologist, being the super intelligent and compassionate woman that she is, realized I wouldn't be able to rest until I had answers, so she called today rather than waiting until Monday (or she just wanted me to leave her alone....). The blood tests were all positive, yes, but the positives alone do not indicate a diagnosis in the absence of other lab tests being negative and my symptoms not quite matching up. Alright, time to move on!
The tests do scream that I have an autoimmune disease, which of course we knew. The rib cage pain and difficulty breathing are easily explained by a complication of AS called enthesitis. The limb heaviness and walking through mud feeling is, sadly, explained by Fibromyalgia and Myofacial pain syndrome- diagnoses from years ago apparently getting worse. The neurological symptoms can also be explained by an autoimmune disease in general and possibly worsening Fibromyalgia. The crushing fatigue is explained by both diseases, which is why it is so severe.
The plan is still to go off the immunosuppressants for a little while, while I try to get the left spinal fusion to heal. It is all such a tornado of issues right now, we decided not to start any sort of new treatments until I get the surgery site healed and figure out how I feel without the immunosuppressants. So.....once again we spin around in this place I seem to live called limbo.
This experience, however, made me revisit my feelings about all of this. I've always had an "It can always be worse" attitude about my health. But, lately it feels like my body is winning the battle between it and my soul and it has been getting me down. More down than usual anyway. This experience reminded me that it can indeed always get worse, even if you don't think so, it can always always be worse. When things get bad remember the good things you have. Focus on what you started to forget. Your friends, family, home, kids, the weather, anything you love that lifts you up each day. The reason you hang on.
Now, don't get me wrong, just because it can always be worse doesn't mean it doesn't suck, and it does not mean you cannot get down or have negative feelings about your particular situation. You are entitled to your emotions and bad days, this chronic illness stuff is not for wimps. But, don't stay there. Don't let bad days turn into bad weeks, months, years, a life. We need to remind ourselves to separate our illnesses from who we are. It's not always easy when who you are inside is trapped on the couch or in bed because of the illness, but that doesn't negate your worth. Being in bed doesn't change who you are deep down, it only changes what you can physically do. I'm not always good at believing this either. I'd say this is one of my biggest problems actually. Our (definitely mine) self worth is very much tied to what we "do" on a daily basis: go to work, take care of kids, clean the house, do the dishes or the shopping, cook meals, go walking or hiking, play a sport, and on and on and on. Sitting looking at piles of laundry that need to be done knowing they're going to stay there, looking out the window at a sunny warm day knowing you won't be enjoying it today, having a list of a million small things around the house that need to be fixed and knowing you just can't do it, watching your kids play together wishing you could play with them, none of this is good for self worth, and it definitely creates anger and frustration. Where does that anger or frustration go? Our illnesses aren't tangible things we can blame or punish because only we feel the pain and symptoms, no one can see them, and they are such an intimate part of ourselves it's hard to separate. So, instead of blaming something or directing anger at ourselves, we need to figure out a way to turn it around.
Thinking about a potentially life threatening and damaging disease being added on to my diagnosis list pulled this all forward. My relief at the lack of this diagnosis is tangible. I can grasp onto it and make this what lifts my spirits. For today.
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