Tuesday, July 22, 2014

Fighting til the end, but my armor is weak....

I made a goal today and didn't reach it. My goal was to not cry at my rheumatologist appointment. I knew what was coming, and I knew I was out of options. As I sat in the waiting room with a killer migraine trying not to puke, I tried taking my mind elsewhere. "Adriane", Dr. U came to get me. I can't speak highly enough of him. It took me 3 tries to find a doc who "gets me". Dr. U gets up every morning and runs 7 miles...(7 miles!) and get this, he HAS rheumatoid arthritis himself! Seeing him for my appointments is not only a help to get me better, but also a huge inspiration boost as I see and hear of all the things he's done and still doing with RA. "So what's new?", he asks. I start off with a huge sigh, "Well, I haven't seen much change from the last time. The minocycline is a no go, too many side effects. I can't spend my life in the bathroom and doubled over in pain." Now he sighs, "Well, there are only so many classes of meds that will help this.Plaquinel you already tried and can't use, sulfasalasine which you are on at the highest level, and the minocycline which also causes you side effects.". I tell him, "I figured it would, because I can't take doxy but figured I'd give it a shot." "Ah", he says to let me know that makes sense to him. I tell him, "I definitely see a slight difference compared to where I was a few months ago. I started the couch to 5K program and am out running over a mile now 3 times per week....but....when you compare it to how I felt a year ago and what I was able to accomplish, it's like night and day.", *que the water works. I say between sobs at this point, "If this is how I need to live and I just need to realize this is my reality now, then I'll put on my big girl pants and make it work....but....I'm just really upset that I can't do the things I want to do. I wake up extremely stiff and sore, unable to move my right hand with a trigger finger of my ring finger and it takes about 45 minutes for me to get it going. I get to work and feel a bit better, but there are definitely things throughout my day that I struggle with or cause pain. My running is getting better, but my right foot has now flared up and causes pain with every stride as my foot strikes the ground." Now his facial expression has definitely gone from a fairly happy look to a concerned look, similar to when a father knows there is really something wrong with their child. "Well", he said, "This is NOT your reality, I don't EVER want you to think that way. This is like a fire and the meds the water. We will keep throwing water on it until the fire is out! You need to be able to function pain free or as close to it as we can get you. You've already worn your armour for too long through this." It's like he can read my mind. I guess that's the difference of having a doctor who can read text book after text book and study after study but not FEEL what it feels like to be the patient physically and emotionally. As we get up to walk over for the exam he explains that just like everything else, people with RA all respond to different things. He then proceeds to tell me that he's on 7 different medications, but someone else might just need 1 and respond just as well. (It is on those 7 different meds that he ran the NY marathon!) He takes me across the hall to the exam room and does his normal check of my bp, heart/lungs, and trigger points/joints. We walk back over to his office and he says, "Well, the next thing to try is a biologic." "I know", I respond. "We WILL get you better", he says. I respond with, "I really hope so." and his immediate response is, "NO, we WILL!". I explain to him that I really wanted to stay away from biologics if at all possible, but if it will make me feel better then I understand. He tells me he will see me back in about 4 weeks to start with the injections. It is within this time that I need and want a miracle to happen. If you know me well, then you know how DEATHLY afraid of needles I am...like need to prep myself each year for my flu shot and breathe through it. I can not IMAGINE getting one EVERY week and giving it to myself yet too!!
I hide a LOT, to the point of where my husband didn't and doesn't even know everything. I'm a Kuenzli by blood which means we suck it up, go about our day and be stubborn to the last drop!  Every day is a struggle, some worse than others. Waking is the worst. Trying to get my aching body out of bed, get showered and my morning routine most days just sucks. I talk myself into putting one foot in front of the other to get myself to work, realizing that even though my co-workers know my diagnosis, and know some of my trivial complaints, they have no idea what it's really like and I'm not about to start using it as an excuse. Walking up the steps into my office if painful. Once I'm loosened up a bit it's not terrible, but minor things like carrying a 5 lb laptop around, turning door handles, opening doors and anything with a twisting movement or fine motor skills hurts...it just hurts. I come home exhausted and 3 days per week still strap on my running shoes and put one foot in front of the other (painful steps) and run. I want to burst out in tears on my runs knowing that I could do SO much more a year ago and the frustration sets in. The frustration of literally NOT being able to make my body do what I want it to. I'm not talking run a faster 5K, or do more strenuous work-outs, I'm talking barely feeling like I can finish my small work-outs. Saturday the frustration/depression really set in after my run and as my husband tried talking to me I just sobbed...walking along the tears ran down my face as he asks, "Where do you need to go? Which specialist is going to be able to make this better?" My muttered response, "I need to go 6 ft down". He can't figure out what I mean..I talk a little louder with a bit more anger in my voice, "I need to go 6 ft under! Just bury me now! I might as well go buy some mumu's, fried chicken and ice cream and have a party because I'm just going to be lazy and get fat. I'm trying to make my body do stuff it won't do!" It's in these times of anger that he doesn't really know what to say, and frankly I don't blame him. He ran back to make sure I was ok during our run and the next day told me, "Ya know, I was thinking. No matter how far behind me you are, I will always go back for you. You did that for me at my first race, you got me to quit smoking, and got me to start running. I will always go back for you." My prince charming....sounds like a quote from a movie haha. I would never make it through all of this without his awesome support.

So, here are my closing thoughts for the day. First and foremost I always remind myself, "It could always be worse." I have friends battling through cancer at the moment, being given their prognosis of months to live. I'm still mobile, I still have breath in my lungs and my heart is still beating. I have an awesome support system of friends and family and if I need help or a shoulder to cry on all I have to do is ask (although being stubborn this is one of the hardest things to work through). A shot? Yeah it sucks, but if it will keep me from getting worse then why wouldn't I? I've literally climbed mountains (with a 20 lb sand bag mind you) gotten over 8 ft walls, and ran distances that most people will never try. This is just another obstacle! Ok but for reals...prayers are still appreciated lol.