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!!!!

NEVER GIVE UP)

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!