Wednesday, August 31, 2011

It's a Steady Climb Now!

(Made up this mountain in Beaver Creek, CO... and a few other mental ones along the way!)

Lately, I've been climbing all sorts of mountains. The biggest mountain I'm working on making it to the top of is my recovery bell curve. The smaller mountain was Cottonwood pass in Colorado last week at around a quantity of 12,50o ft at the peak. I find it very interesting that some of the biggest measurable obstacles seem so much more less significant to the spiritual, medical, and emotional obstacles I've faced lately. But on all fronts, I see everyday that I am heading out of the black hole I was in... even though some days I have to take a few steps down, that's no problem with me.

I continue to make leaps and bounds in my recovery. After being told that most people don't even walk with the critical illness myopathy for 3 months; I actually rode my bike in Colorado at that mark! Granted, it wasn't my average pace and to most, I looked like a recreational, occasional cyclist... but I could have cared less. I was riding my bike people! 3 months ago I couldn't even breathe!

(Me and Suzan went for a easy trail spin at Buena Vista, the views were amazing)

Let me back up, so I still have been battling the fatigue and shortness of breath from letting the lungs heal up, but my good friend Anne decided she wanted to do a last minute trip to CO for the US Pro Challenge and take her 2 youngest gals with her. Being that I didn't have any type of work schedule to follow, I really wanted to go since my days around the house were starting to make me feel like I was in an infirmary prison. But given that I just had a major pulmonary event and CO is a bit higher then IN, I needed to make sure all my doctors would feel it was safe to go. Long story short, I discussed the trip at length with all the wizards, and with precaution, I was given the go ahead a few days before we were set to head out! Splendid!
So off we went, we had a nice trip and arrived at Buena Vista to watch the start of stage 1 in Salida. It was fun to watch the gals see a pro event up close for the first time, but even cooler to see young gals be big fans of cycling. It was a busy day and we tried to pack everything we could into the time we had, so I was pretty much exhausted from the start of the trip. I thought for a while that I was having a hard time sleeping as a result of the strange bed, but the more I think about it the more I think it was because of the high altitude. So I guess I won't be getting a altitude tent to sleep in anytime soon.

(My travel mates: Anne, Suzan, and Bethany Young)

(Suzan and Bethany didn't know this guy at first: posing with Bobke)

(Yeahhh... mtb trails!)

The next day we wanted to be at the summit of cottonwood pass that was just a short ways away from where we were staying. All of us gals took off at the base of the mountain early in the morning to allow plenty of time before the racers came by. I was going very slow but I made it to the top along with Bethany (17) while Anne and Suzan felt the effects of the thin air and had to take a slower trip up by foot. During my slow ascent myself I was feeling that familiar "burn" in the lungs from exercise, and despite the fact that this had ever been the highest to the sky my body had ever been and that I had been off a bike for 2.5 months and I was now climbing a mountain, it didn't even come close to the difficulty of breathing or the pain I had when I was in the hospital. NOT EVEN CLOSE. I think I'll hang on to that thought for a while. What I went through puts pain and discomfort in a whole new light.

(Took me a long time, but made it to the top of Cottonwood between the Colliegate Peaks)

Bethany and I had a blast and it truly felt like we were on the top of a climb in the TDF. I met tons of people and it was a cool party atmosphere while we all waited for the 5 minute time frame that the riders would pass us. After a strong storm dumped a nice chill on us (we were freezing above tree line), we (or more like I) screamed like teenage girls when the riders passed by! Very cool.... but not as cool as racing myself. Made me miss it a lot.

(Some firepower at the Avon stage start: Andy S., TVG., and Levi)

The following days we spend in the Vail/ Avon area. We watched to TT and the start of the Avon stage. I was able to spend some time at the D2 shoe factory and meet legend Don Lamson who makes the best cycling shoes you could ever imagine putting on your feet. I fell in love with Eagle, CO and am seriously thinking of moving there. Time will tell and I think a winter visit would give me a idea of it better. Having never been to CO before, it was a place I really felt like I belonged. It really is an area built around the outdoors and that's what I live for! Something for me to seriously think about....

(I spent my share of time in the hot tub looking at the mountains)

In other news, I was really pleased with how the ankle held up, and despite some major swelling and surgical discomfort, the terrible nerve pain remained absent. Dr Porter said it would be a couple more months before that subsided, but compared to the misery I was in before, I'm not complaining at all.

Otherwise, I was so happy to be back to work part time this week. I had my first day Monday and that happiness quickly faded as it didn't go as well as I hoped it would. Even though I felt very safe to take care of people, it took every bit of energy I had to make it through a short day. I worked a few hours, needed a 4 hour nap, then topped it off with a 12 hr night's sleep. I'm praying this was more related to my lack of sleep and body clock being on mountain time and will find out soon enough in the morning. I know each day isn't going to sail along as smoothly as I would hope for, so I just have to keep in mind how far I have come and know that I can and will make it to the peak someday with this illness. Some days I look back and shake my head and am amazed at just how far I have come from where I was in the days I spent in the hospital where it took too much energy to even be able to simply say a few words at a time. God really has given us amazing shells that can recover and regenerate from extremely tough circumstances!
So I just keep climbing the mountains one step at a time and eventually the glory of the view will take my breathe away (in a good way)!

(Sunset near Buena Vista Trailhead: a picture could never do it justice, but it's still nice to look at.)

Wednesday, August 17, 2011

Coming Out of Africa

(Getting outside a little more to enjoy the summer life around me)

Soooo lots has happened since the last blog and I now officially think I can say I am getting more comfortable in my zebra stripes walking around in America with the rest of the horses. First of all let me just say that I have seemed to break the status quo of how my body "should have" acted with any of this experience. I think every doctor and specialist has told me that I'm a zebra in some way and my fitness (or fitness I used to have) has hindered my diagnosis or future expectations of how I will recover. This has both been a blessing and a curse at times. It has both saved my life and has made things difficult to discover and predict for the doctors... we aren't really used to treating active people these days and normal parameters for some people aren't normal for athletes. Regardless, I am acting true to form for a zebra in a field full of horses and while I may act and perform different from those around me, I'm just doing what I feel everyone else would do, just trying to live and survive!

(This was a sign they had up at IUMC: That's darn right!!!!

So the biggest news is that it appears that I do not have myasthenia gravis!!!! This is such a huge relief to me that it isn't a joy I will even attempt to justify with words. MG would have been a long term disease, and by all accounts of the specialist, it would have been very unlikely that I would have been able to continue to ride a bike, let alone race one. It has been many appointments and lots of testing to get things pinned down better, but one of the top neurologist in this area is about 90% sure that I have "critical illness induced polyneuropathy and myopathy." That's a mouthful! I spent a nice long appointment have needles stuck in my arm and forehead down at IU Medical Center a little over a week ago and as a time trial in a bike race shows the truth... so does a EMG for the most part. So here's the basic description of what's going on:
Critical illness polyneuropathy (CIP) and critical illness myopathy (CIM) are overlapping syndromes of widespread muscle weakness and neurological dysfunction that can develop in critically ill patients receiving intensive care. CIP and CIM have similar symptoms and presentations and are often distinguished largely on the basis of specialized electrophysiologic testing or muscle and nerve biopsy. The causes of CIP and CIM are unknown, though they are thought to be a possible neurological manifestation of systemic inflammatory response syndrome. Corticosteroids, which are widely used in intensive care, may contribute to the development of CIP and CIM, as may elevations in blood sugar, which frequently occur in critically ill patients.

So basically, I still have a long recovery, I'm told that my neuromuscular function (NM) will start healing in about 6 months and that I should feel pretty normal in a year, but the complete recovery as shown by EMG takes about 5 years... but they don't have any tests that demonstrate how an athlete would recover from this, and I hope to be above those estimates, but I have to not expect to and be realistic about it and if I beat the estimates it will just be icing on the cake!
It is still a serious recovery, as the name implies, and I still have many days of testing and resting to make sure everything goes okay, but at least I am starting to feel a little more like myself as each day goes by. It's weird to look back at the last 3 months and realize just how bad I have felt and also how little I remember, just feels like I have been suspended in the twilight zone and am finally starting to float back into the earth's atmosphere. I have been asked to describe how I have felt and I tell people to try and imagine having the worse cold or flu you've ever had... and take that times ten. That kinda sums it up I guess, but the cool thing is that during the worse days I've had at home God has this magical way of kinda shutting down your brain and helping you block out all those memories somewhat.

In other news, I was able to take some sort shifts back at work and was able to do 2 small cases. It will be a long time before I can throw down a full day or a full time schedule, but it was good to get back into the environment and be back in a hospital again around the sights and sounds that I went through... just in a reverse role. The ironic thing about my first case back to work? The patient I took care of was in the exact same ICU room I was in. Guess that is kind of going back the scene of an accident you were in... taking a deep breath, saying a prayer, and stepping over the hurdle. I was happy to make it over that hurdle and was also thankful to have God be beside me to take it so I didn't have to alone.

So, I'll slowly get back to work next month as a part time worker. I look forward to the days to do anesthesia for others, but also know that I will need lots of rest to recover from those days. It's a huge transition to get back "out there," but I'm pretty thankful to be doing so since I was very aware at one point that I may never be able to help people again.

I slowly am getting out and being more active, which has been so nice! I try to take some cruises around on the granny or cross bike in town and it's been kinda nice to have to slow down a little. Just enjoy what's around me instead of being in such a hurry to get from point A to point B. I'm still unsure of what my future holds this year as far as cycling goes, but I'll just take it as it comes, and run with the horses when the time comes.

(Getting out on a little spin with Anne. Baby pedals back! Felt so good!)

Once again, I have to give so much thanks to everyone that has helped me or sent a nice word of encouragement my way. It means so much to me and it's been an interesting experience to see so much love and see so many helpful people here in this world. It really has been, as they say, an eye opener to who is willing to be there when the chips are down. I've learned who my true friends and family are in the tough times and I've been very surprised by the results in both ways in some instances. Funny how that works. I have to admit, it's been a bit of an emotional challenge to handle the disappointment of some I really felt were "close," but it's always good to learn these things the hard way. I am forever grateful to those who have been there for me when I needed it more than ever! You all know who you are and I want you all to know I wouldn't have made it through this without you guys and gals!

So I'm still making my slow trip out of Africa as the zebra that I am. I know it's a long journey and I don't quite understand it all, but I know there will be a brighter future on the horizon soon!
Thanks for reading and following along everyone... I look forward to the day I have some racing to report on instead!

Wednesday, August 3, 2011

Waiting to See the Wizard

"No one sees the Great Oz. Not no one. Not no how."

I think we all know what that comes from... The Wizard of Oz of course.
Well, at this point I feel like I'm waiting to see the wizard. I've always had this standing joke on the practitioner side of my life that us health care workers are seen as wizards by the patients. I don't have any religious backing to it, it just refers to the Wizard of Oz. You see, it seems everyday that it gets harder and harder to get into see a health care person in this day and age for an appointment. After all, who gets into high end health care anymore? It's a hard job (highly rewarding) and trust me, the pay doesn't add up to the risks that could be found in other 9-5 jobs in this country. Back to the point. So whenever a page or appointment is finally granted to see "the wizard" it is anxiously awaited by the person to see this magical being that will hold hope and answers to the future. And while that may be true in some aspects, really some may find "the wizard" to be a bit of a let down... just a normal guy standing behind a curtain. Just like in the movie. Don't get me wrong, I'm one of those wizards and I take it very seriously knowing that what I do has a great impact on a person's life, but the fact is, aside from my education and training, I'm just a normal person like everyone else. Now that I'm in the reverse role, I see how it feels to wait for "the wizard." But really, I joke about saying this and I know my real wizard sits on a throne and can't be seen here on earth... He's the One's answers I really await to hear. So it's just a joke, just an analogy like The Wizard of Oz is filled with, but I'm waiting to see the wizard at this point.

Right now all I can really do is wait to see the wizard. After having some more nerve conduction tests last week with the neurologist at Lutheran, in which I was faced with more needles and electrical currents being sent through my body, things came back strongly positive for some neuromuscular problem... probable myasthenia. As a result, the specialist here is now sending me to a top specialist in the country. I was thankful my neuro here had some pretty close friends that have elevated to the top of the MG field, and after some personal phone calls were made and my case was discussed, I am on a fast track to see a doctor at IU Medical Center on the 12th to have some more nerve testing done and discuss my problems further. It seems like forever to wait this long to get some more answers since I am so anxious to get back to normal life and get back to work, but I am getting a true lesson in being patient through this and now understanding that sorting out this disease is not going to be a quick fix like a broken bone or a surgery waiting to heal. So I have no other choice but to wait and be patient.
Day by day I know I'm getting stronger. I am now going for short walks in my neighborhood, able to manage my house, and getting out in the real world in small ways. At times, I believe I am able to return to work... then I realize that it's not possible since a walk around the grocery store is exhausting... but I'm getting closer everyday. At best, the neurologist is shooting for me to return to work in Sept. At best.

Since I started this blog many moons ago to keep everyone up to date on my cycling adventures, let me touch on my cycling thoughts with all this.

I know a lot of people have the thought in their mind that my cycling career is pretty much done given the fact that I'm dealing with a problem that not only has been affecting my lungs, but more seriously the neuromuscular system. Two pretty import things vital to cycling! Honestly, I would be lying if I told you that thought didn't cross my mind a couple times, but I'm determined to be back on the bike someday. I've been asked a lot about when I may be able to get back to riding again. Well, the answer is that I have no idea and it's not really the main concern right now. Yes, I miss it dearly, but right now, I have something bigger than the bike to deal with. The bike will always be there. Always.

Right now, I'm still facing recovering from a serious illness that about took my life, and now also trying to fight a long term disease that could effect me the rest of my life, along with still recovering from ankle surgery. I don't know when I'll ride again, race again, or what will happen when I do... but I WILL. Right now I'm waiting to see the wizard, but don't think for a second that I'm not believing and dreaming that I can do it. I'm on the Yellow Brick Road, and in the end my dream will come true... however I dream it to be.

Once again I am overwhelmed by all the love I've had through all this. I've really learned that there are so many good people out in the world. I have been so blessed by the love of several people in the OB Dept at KCH (among others) that have helped in so many ways, I'm so thankful for them along with my good friend Anne especially. This has brought on so much more than just physical problems; the emotions and issues of such a serious event have really tested me in many way and having so many people help, aside from my family, has solidified my faith in the world in general and has been a rainbow in all of this!
Thank you all so much and God Bless.

"A place where there isn't any trouble. Do you suppose there is such a place, Toto? There must be. It's not a place you can get to by a boat or a train. It's far, far away. Behind the moon, beyond the rain."