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.

  

2 days post-op hip surgery

Monday was the day, the day that hopefully is the start of my getting back to running. It's been a loooong 10 months or so. I went through 2 rounds of p.t., one being a complete running analysis, I had my hip injected, I saw a sports med doctor, and I just stopped running. FINALLY, I had an arthrogram done, which did find that I had a torn labrum, (think meniscus in knee, but in hip, best way for some people to understand) and I also had a bone spur. We got to the hospital at about 10:40 am to register and for them to get me all set up. Didn't wait long in the waiting area til I was called back. I was only allowed clear liquids up until 8:30am so I made sure to get my coffee and had a little bit of water and apple juice. Nurses came around and asked my name about a million times, got me hooked up with an IV and took my blood pressure, which was actually through the roof! I suppose on the inside I was more nervous than I thought. I think the first reading was somewhere around 149/104, and then came down a little to like 138/94. Time kept going and going and going until a nurse finally said she'd ask to see what's taking so long. At 12:00 noon she came back to let us know that the doctor was still in surgery with his 10am patient and had another to go yet before me, (mine was supposed to be at 12:30pm) and that my surgery time was now looking to be more like 2pm. We waited and waited some more and finally they came to take me to the OR holding area around 1:45pm. After we got over there we heard them talking about a femur fracture on a little boy in the ER. No sooner did we hear that and they wheeled in a gurny with an Amish family and a little boy about 15 mo old. They came to tell us that he was going to go before me. I was frustrated, but how can you be mad that a little kid needs to wait to be out of pain! SO, more waiting is what we did. Around 3:30 they finally came to get me! By this time I was starrrving, thirsty, and my back hurt so bad from laying down for so long. I gave John a kiss goodbye and honestly that's the last thing I remember! 

About 2 1/2 hours later I woke up in recovery. I hurt, I felt sick to my stomach, I was shaking all over uncontrollably, and was extremely thirsty. I was writhing around in bed and could not get comfortable. I had so many wires and tubes hooked up to me, I was half scared to move! ugggh, the pain and nausea was terrible. The nurse asked how I was doing and I asked for something to drink. She said if I'm nauseated they wanted to wait, but gave me one of those lovely sponge things to suck on to help with my dry mouth. I could NOT get comfortable. I tried laying on my side and that didn't work. Finally the 2 nurses that were there got me out of the bed and into a wheel chair. I thought maybe sitting up more would help my back. I could NOT stop shaking. The nausea continued to get worse until I finally asked for something to get sick in. EEEWWWW, really? I've never had this reaction to anesthesia! They asked about giving me a shot of phenergan, but I know how much those suckers hurt and they put me out and I had to get up a flight of steps when I got home! At that point I think the anesthesiologist came around and suggested giving me benadryl through my IV, so they did. Still didn't help. Next was haldol, still didn't help. He told me next time to make sure I let them know I get car sick/motion sickness and they can give me something to prevent this. NEXT we tried a transderm scopalamine patch, same thing people wear for motion sickness on a cruise (I WISH that's where I was!). FINALLY, I was able to feel a little better. There were a few hours in there where I just kept nodding back off to sleep. It was being discussed about me staying the night after all. I really didn't want to do that. At this point, I'm pretty sure I had John a little worried. They asked about giving me a pain pill, but with already being nauseated I declined that too. John needed to run out quick and get my RX from Walmart before they closed, so the nurses told him to do that while I tried to come around. Something kicked in at some point, because by the time he got back I felt MUCH better! The nurses mentioned getting my IV out and I told them, I noticed it was going to be IV'S, as I had noticed that at some point when I was out they put another IV in on my hand. REALLY?! They think that maybe the other one wasn't working well, so they had to start another. I got my IV's out, got dressed. They had to give me another pair of teds because at this point I had NOTHING on my feet, including the socks I came in with. They realized they must have been thrown away so I also got gift cards from their, "I'm sorry please take this so you don't get mad at us" box. At this point, it was about 9:30pm. 

I was wheeled out to the car, the nurse saw my crazy crutches and adored them. The almighty duct tape...so versatile! 

John made me a sandwich when we got home, at that point I had taken a percocet just before leaving the hospital. My foot was completely numb with that pins and needles feeling. TMI, but the numbness went all down my leg into foot, and then also radiated to the right, right into my um...lady parts lol. I have a HUGE bandage on and the doc said I might be leaking fluid over the next couple days and might even need to put more on to reinforce things if too much liquid seeps out! eeewwww

My time has been spent in bed or on the sofa, sitting up feels good, but I can only do that for so long. I am allowed to put about 25% weight on that leg walking with my crutches. In listening to John's recording of Dr. Zartman, I found out that my labral tear was pretty small, BUT, a decent size of my labrum was completely pulled away from the bone. 

I got a cool keepsake showing exactly what they did. All the medical people I know will think this is cool like I do! SO, it's hard to see in the picture, but apparently below the pointy thing in the second picture is where I had a small tear, maybe not even completely torn, but very fragmented. The shinier, whiter part beside the instrument in the first picture is where my labrum was pulled away from the bone. They open that area and use that pointy instrument in second picture to, "pick, pick, pick" as Dr. Zartmen said on the actual bone underneath until it's filled with blood and purposefully injured and fractured. It's called microfracture chondroplasty. The body will hopefully recognize that and grow more cartilage over that area. The flap was put back into place and sutured. The doctor had mentioned the possibility that I might also have some issues with my bursa, but after seeing everything he did, he said that I definitely had enough going on to cause the pain I was having, and it's fairly unlikely that I will need to have anything else done. (wooohoooo!) I have either 2 or 3 incisions on the outside and will have my lovely bandage taken off tomorrow at p.t., which means NO showers for me until then! 

Overall I'm not feeling too bad. Last night I had a decent amount of pain, and of course waking up in the morning feels much better. This is my view from the bed...

  Yep, staring at our medals and a picture of a lotus. One of my favorite flowers, especially for the meaning!          

So I'm staring at my goal for this year. If I don't do any races until July that's fine, but I WILL do the PA sprint again this year. I had a LOT of things on my bucket list to do last year and this interfered with them, and now after surgery they will still need to wait. I know I'll have to be patient and take things slow. I will be starting all over again, probably even back to doing the couch to 5K program. My hope is that I can do it pain free. I start p.t. tomorrow and know it's probably going to be torture! So here's to crushing goals and taking things one step at a time....literally!