Allergy-Sufferers, Unite!

It is with reluctance and deep sadness that I admit I have officially joined the countless ranks of allergy-sufferers. Has anyone else experienced the phenomenon of developing seasonal allergies in your twenties? (Before I turned 25, I would’ve given my exact age, but now that I’m 26, I’m in the “in your twenties” group...what’s up with that?) My mom did, but I naively thought I would be exempt. I was wrong.

After suffering from a runny nose, nasal congestion, and a phlegmy cough for weeks, I recently brought up the issue to my doctor, fearing the worst (hospital admission, countless infection/virus tests, etc.). Her first question: “Do you have allergies?” Allergy-free my whole life yet plagued by a variety of much more sinister/rare diseases, I never even considered the possibility that my symptoms could be the result of something as relatively harmless as allergies! After taking a mild antibiotic to rule out any possible infection and experiencing no change, I started an allergy med instead. I’m quickly becoming adept at this whole allergy business; Claritin and Zyrtec haven’t helped, so now I’m on to Allegra and Mucinex. Wish me luck!

But these allergies are proving to be a much bigger annoyance than I anticipated. The worst part by far is my lack of taste as a result of the congestion. I’m choosing artichoke and corn over vanilla ice cream and milk chocolate, simply because I can taste them more! Though I love vegetables, for those of you familiar with my infamous sweet tooth, you know how serious that is. And I’m sure I’ll shock/disgust some of you with this confession, but tonight I ate a bag of “Loaded Chili & Cheese” Ruffles. Yeah, I didn’t know they existed either, but they were awesome because I could totally taste them! I’ll (hopefully) never say this again, but tonight, thank God for salt and MSG :).

Me and Rapunzel

I watched the Disney movie Tangled with some friends a couple weeks ago for the second time, and I realized something crazy. Aside from the glaring difference of our hair lengths, I can totally relate to Rapunzel! She was singing that one song “When Will My Life Begin,” (for my fellow Disney fans, that’s the one she sings near the beginning of the movie while dancing around the tower) and she lists all the things she does in a day since she can’t go outside. With the aid of modern technology, I’m fortunate to have quite a few more options at my fingertips (literally) than she did, though surprisingly I do participate in many of the same activities, such as cooking, reading, and exercising. She prances around whereas I lift weights and play the Wii Fit, but you get the idea.

But the song addresses another much deeper feeling to which I can relate, which is that life is passing you by as you’re stuck inside, unable to participate in the normal day-to-day activities that take place outside of the home which we all take for granted. I never thought I would miss grocery shopping this much. I’m grateful to be able to have visitors at least! She just had that one lizard, who you must admit is pretty darn cute.

Disney, I love Tangled, but I do have one bone to pick with you. As a fellow light-skinned person, I can speak from experience when I say that Rapunzel’s skin would NOT be that color if she lived inside her whole life. Mine is practically transparent and it hasn’t even been four months. Come on, be realistic. Would your movie have less appeal if you made Rapunzel’s skin somewhat pasty? Probably. But us Caucasian bone-marrow transplant patients would applaud your realistic portrayal, which we all know is Disney’s highest priority. I mean really, doesn’t every woman look like Jasmine or Sleeping Beauty??

Running to Win

I read this scripture this morning and felt compelled to share it on the blog because it helped me to re-focus on what's important and not get discouraged by some of the challenges life is throwing at me at the moment. This "race" I'm in will totally pay off, but requires self-discipline, focus, hard work, and perseverance. The scripture also relates perfectly to my last post about running marathons :).

1 Corinthians 9:24-27 MSG
24-25 "You've all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You're after one that's gold eternally.
26-27 I don't know about you, but I'm running hard for the finish line. I'm giving it everything I've got. No sloppy living for me! I'm staying alert and in top condition. I'm not going to get caught napping, telling everyone else all about it and then missing out myself."

I feel corny saying this, but in this transplant "marathon," I'm going to "run to win." However, when I run my actual marathon, I don't care about winning, just finishing!

Spirit of the Marathon

In light of this whole marathon theme, I ordered the documentary Spirit of the Marathon from Netflix the other day. The documentary follows the stories of several different marathoners preparing for the Chicago Marathon, from first-timers (oh yeah!) to seasoned veterans, from family members running together to an older gentleman who ran his first marathon at 65! Though yes I know, Mom, 65 is still very young. ;) Zack and I really enjoyed the stories and footage of the runners’ training and marathon, but I felt somewhat sad because it reminded me of how much of their training my body can’t handle right now. A year and a half ago, I could’ve watched this video and gone out the next day to start training, which is what I want to do! But now I’m lucky if I can do leg lifts and lift some two-pound weights in bed without straining my back.

I was talking about these mixed feelings with Zack, and we were both reminded of how important it is for us to have patience right now with life: career, health, schedule, fitness level, everything! I’m on day 82 today (82 days post-transplant), which feels like a couple days and a thousand years all at the same time, and I wish I could just snap my fingers and be at day 365! But I try to remember (and I’m fortunate to have Zack, my family, and some amazing friends to help remind me) how far I’ve come and how much better things are overall than they were a month, three months, and especially a year ago. So though I can’t train for my marathon in most of the traditional ways right now, I guess I’m mentally preparing, which hopefully is just as important! As grueling as it is, I’d still rather endure a marathon than a bone marrow transplant any day...

On a lighter note, as inspiring as the documentary is, it convinced me that I want to do a half-marathon instead of a full. There are some seriously insane people who run these marathons, especially Chicago and Boston. I’m talking about a woman running at a 5-6 minute mile pace for 26.2 miles. INSANE. I can barely sprint one lap at the pace they maintain for an entire marathon! But apart from not wanting to run with crazy people, I saw just how hard training for and completing a marathon is on your body. Preparing for a marathon requires not only massive amounts of time and physical training but also involves planning, stretching, changing your diet, and so much more. Since my goal is and always has been to run a marathon for fun and for the victory of finishing rather than for the competition, running a half-marathon seems to be a much better fit! I’m thinking somewhere with some beautiful scenery. I asked Zack if he would either run the whole thing with me or join me halfway through...no promises yet, but I think the documentary at least partially won him over :).

You Got My Back?

The other most challenging issue I’ve been dealing with since transplant has been my increasing body weakness, specifically in my legs and back. Medical steroids cause “muscle wasting,” and the higher the dose, the greater the muscle loss. Even exercising for about 30 minutes daily, including a combination of weights, yoga, and/or balance and cardio exercises, isn’t enough to enable me to maintain my muscle tone, let alone increase it. This experience is frustrating, especially to someone who’s played sports and worked out her whole life! To go from running a few times a week and generally being quite active to not being able to squat down to lift a pizza from the oven is a sobering and discouraging experience.

Being the genius that I am, I tried to help Zack push the couch over a few weeks ago and strained my back. I’m definitely guilty of trying to be Superwoman at times ;), but this time I wasn’t; I was just doing something I would normally do! Ever since then, my back has been extremely sensitive and has started periodically spasming, and I’ve had to learn to ask for help with simple tasks I would normally complete without a second thought. It’s been such a humbling experience to ask for help opening a drawer, reaching the paper towels, or even lifting a bowl out of the fridge. As challenging as this new development has been, Zack and others have helped me to see the good that can come out of this situation, which is referenced in my favorite scripture in 2 Corinthians 1:8-9:

8 We think you ought to know, dear brothers and sisters, about the trouble we went through in the province of Asia. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. 9 In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead.

I know God wants me to learn to rely on him and other people through this whole experience, which is one of my greatest weaknesses. And like the situation with my blood sugar, straining my back has given me a whole new level of understanding and compassion for people who deal with chronic back pain. Thankfully, I start physical therapy next week and am hopeful that my back will slowly improve, along with everything else!

It’s helped me to see taking care of my body as my full-time job right now. The things I’m doing to take care of myself are things I would be paid a full-time salary to do if I were managing someone else’s health needs! When I look at my life from this perspective, I feel way more productive and focused, rather than feeling like managing my health needs is a huge disruption to my life and career. For now, when completing surveys that require me to list my career, I think instead of “Education” I’ll start checking the box next to “Medical.” :)

Baby, (Don’t) Poke Me One More Time

I wish I could be writing in the blog more, but to say life has been crazy lately is a bit of an understatement! Which is funny because people saying “life has been crazy” as an excuse for X, Y, or Z is kind of a pet peeve of mine. Maybe it’s just me and my circle of friends and family, but when is life ever not “crazy”? Just once I’d like to hear someone say, “Life has been really slow lately; I actually have way more free time than I know what to do with!” :)

Two of the issues that have occupied the most of my time and energy (emotional and physical) lately have been my fluctuating blood sugar and increasing body weakness (I'll discuss this in my next post), both of which are direct results of the steroid I’ve been taking since my transplant.

Soon after starting the steroid, my body stopped producing its own insulin, resulting in my temporarily developing the equivalent of Type 1 diabetes. I’ve had friends diagnosed with diabetes and seen how completely and drastically their lives were affected, but I’ve now been able to understand the hardship of their experience in a whole new way, giving me a great respect and compassion for people with diabetes. For the past two months, I’ve been required to check my blood sugar (prick my finger to draw blood) five times a day, including at 2 am for several weeks, give myself five shots a day, learn how many carbohydrates are in every single thing that I eat or drink, document everything that I eat or drink, severely limit my carbohydrate intake between meals, and call endocrinology almost daily to discuss my blood sugar and adjust my insulin dose.

It’s been exhausting. By the time I complete all the necessary steps before eating, my food is always cold! Now I know why my mom doesn’t care much about the temperature of her food; she’s so used to years of getting everyone else everything they need for dinner that by the time she sits down to eat, her food is lukewarm. To all the moms out there, I feel your pain! I’ve also developed calluses on all of my fingers from pricking them so frequently. I guess it’s not normal to talk to your finger as you gently massage it, pleading with it to give you just a little more blood so you won’t have to prick yourself again, but then again, when have I ever been normal? ;) My mom suggested using my toes instead, but I think my fingers would have to become rock solid before I’d resort to that idea!

The good news is that as I’ve slowly been tapering the steroids, my body has gradually been starting to produce its own insulin again, resulting in my blood sugar beginning to stabilize and return to normal! I almost started dancing a couple days ago when, for the first time in almost two months, I didn’t have to give myself a shot before eating breakfast! Yesterday the endocrinologist gave the okay for me to not give myself a shot at breakfast OR lunch today, and you’d have thought I won the lottery for how excited I was :). It’s the (not so) little changes like these that remind me of how far God has brought me and that, as difficult as some of my present circumstances may be, this whole experience will be worth it and I have so much to be grateful for.