As always, I am late. I’ve been told (on NUMEROUS occasions) that I will be late to my own funeral! However, this time there are no annoyed people waiting for the star of the show to arrive! 😉 Just kidding. *Enter every single one of my friends and family members slapping me upside the head and rolling their eyes*
I am one day late to celebrate National Diabetes Awareness Month (November). I didn’t want it to go by without some sort of mention, so to give everyone a glimpse into life with Type 1 Diabetes, I thought I’d share something we experience many times a day – our roller coaster.
The other day, I was making some brownies for a work event, and as I was mixing the chocolate mix in the bowl, the aroma took over. My stomach started grumbling. (I hadn’t eaten yet…big mistake!) Then my mouth started watering. So, by the time I finally poured the last amount of mix into the pan, I went to TOWN on that bowl, licking it spotless and eating every tiny spec of brownie mix left on the mixer blades! Followed by a nice ice-cold glass of milk, of course. Culinary nirvana in my mouth!
Mmmmmmm… but then I’m instantly slapped back to reality as I remembered, oh crap, I didn’t measure how much I ate! How much sugar was in that amount? How much insulin should I take to cover that? I should’ve taken my shot BEFORE pigging out on the scraps! Now my sugars are going to fly through the roof and damage my precious Kirby (and all my other organs I shamefully haven’t named)!
Yeah, the satisfactory “moment” was very short-lived, and ironically, this type of guilt and fear is very common for anyone who has diabetes when indulging in even the smallest amount of food we “shouldn’t have”.
I’m not perfect. No one is. We all partake in those small (or sometimes big) “treats” to ourselves… our fave pizza, an extra beer… because it TASTES SO GOOD! Who could blame us? I mean, this is what living is about, right??? Don’t you hate it, then, when that little angel wearing the doctors’ wings on your shoulder starts shaking his head in disappointment? I hate that angel. Such a killjoy (does anyone ever say that word anymore, or is that a total 50’s thing? LOL!). I have to give it to him, though, he sets me straight. I know it’s a treat I can’t eat too often because, while those treats could have the same effect on everyone regarding the extra poundage we might gain, the sugar has the added effect of tearing up my organs to pieces… in a very slow and drawn out process that only us lucky diabetics get to enjoy. Weeeeee!
As I grudgingly pulled out my glucose monitor to check my sugars and see what kind of damage was done by my brownie mix tear-down, I got angry. First at myself for being stupid enough to go hog-wild on something that I knew could be bad for me. Then I start to get angry because I SHOULDN’T be getting angry at myself. I’m human! We only live once and I don’t want to live with regrets! It’s just a freakin’ brownie for Pete’s sake!
Then I start getting cocky… why am I so worried? It’s not going to cause any immediate damage to me NOW. It’ll take YEARS and bathtubs full of brownie mix before I ever start seeing any kind of damage! Right? Then I get a bit scared… wait… Um, hello?! I’ve ALREADY been seeing those damages. What the hell brought me to my current situation in the first place!?! Will I lose my kidney again? What if I go blind overnight? I’ve heard that happens! Why did I eat that brownie mix!?! And why did I follow it up with a stupid glass of milk (added carbs)!?! I’m going to lose my foot now!!!
Then the guilt sets in. I can’t believe I allowed myself to place myself in such danger… I don’t want to be an amputee! I don’t want to go blind! I don’t want to damage and possibly lose Kirby (whom I’ve fought SO HARD for)! I’m never going to eat another brownie again! NEVER!
All over a few stupid fingerfuls of brownie mix.
Ok, so seriously, I don’t bust into an all-out panic attack with every bite I take, but there is always a quick 5-minute wave of the entire process above that shoves it’s way through my mind when I veer from my usual, approved meal plan. Most of that, I know is due to the years of fear tactics my doctors have shoved down my throat. (They have to. We wouldn’t take them seriously if they didn’t, especially when we never see immediate damages!)
I’ve been lucky enough to manage these feelings of guilt and fear by educating myself with the facts. I’ve been taught how to correct these sugar overloads, which aren’t “mistakes”, they’re “human”. I’ve learned to discipline myself and not go overboard with any of the foods that can badly affect me. I’ve learned it’s OK to have the occasional “treat” if I cover it with enough insulin (note – “occasional” is key word here).
So the next time you grab a donut (or two…or three) at the office this Friday, or stop at an ice cream shop just because you have the craving for a double-dip vanilla cone, stop and observe what your thoughts are when you eat it. I’m not asking you to feel guilty because you can more easily eat these items, I’m simply asking that you understand the difference of what the thought process is behind your treat and ours. And please don’t ever guilt us into something by saying “oh, a bite or two won’t kill you” because, again, you’re setting off that entire emotional process above that shouldn’t have to go with enjoying a bite or two…
Things I’m thankful for today:
1. If you’ve gotten to this point of today’s post, I’m thankful you actually took the time to stick around and read this whole thing! Whew…
2. Sooooo thankful that my first Thanksgiving turkey dinner went off without a hitch! Everything turned out so yummy and I had a blast cooking it all! (I should also be thankful that my family actually liked it all! hee… )
3. Manini’s GF All Purpose Flour – the Cadillac of GF flours! This flour allowed me to make the best, fluffiest, softest dinner rolls I’ve had since being diagnosed with Celiac! SOOOO good! No brick breads for me!
4. That I was able to spend fun quality time with my closest friends and family during the holidays! (Shout out: Steve, Nick, Elissa, Kim, Matt, Mom, Dad, Barbara, Ladonna, A.Kathy) 😀
5. I’m thankful that my Aussie kidney friend, Maria, has a chance to share her experience via a possible book deal! Check out her website here! Good luck Maria – we’re rooting for you!
Happy New Year’s everyone! Did this year fly by or what? And it hasn’t seemed to slow down at all…it’s already mid-January and it feels as if several months have already passed. Yikes…SLOW DOWN already!!! LOL! I don’t want to rush into my old age any more than I have to, thank you. ;P
So, to start off, I’d like to proudly announce that this month (Jan. 5th to be exact) was my one-year kidney-versary! YAAAY Kirby!!! To celebrate, my family and I had a special dinner in the glamorous city of Paris! We even partook in the London New Years Parade! (Come to think of it, why did I NOT do a Kirby Flat Stanley??? Ugh… wish I had thought of that earlier to share with ya’ll.) I’ll share more about my trip in future posts. I’d like to say the Queen was absolutely enamored by our presence, but I think our giant drum (Big Bertha) stole the show and overshadowed us all. LOL!
As I mentioned earlier, I wasn’t expecting that year to go so quickly, but am kind of glad it did in a way. I don’t wish the initial post-transplant medication tweaks and side-effects on anyone! My family and I were reflecting about the last few years and all of the shit we went through to get to this happy moment today, and one by one everyone added something that made the list longer… I was struck a bit silent when I thought about it. In my head, I always convinced myself that I was “tough enough” to get through each scenario as it happened, and I can proudly say I did. However, had I seen this list of things BEFORE they happened, I’m not so sure I would have been brave enough to push through. I guess ignorance was bliss in my case. So, in a brief moment of chest-beating, I’d like to summarize the last three years of hell:
- Kidney failure (hello, the start of it all)
- Loss of my dream job
- Stroke-like symptoms and seizures/stroke scare
- Too many visits to the ER
- Pleurisy (multiple times)
- Staph infections
- Blood clots in my lung
- Death of my soul-kitty cat (RIP Zaney)
- Cataracts and Retinopathy
- Severe anemia that left my sister literally carrying me to our apartment
- Heart attack
- Two stents put in my heart
- Cancer scare (in my liver)
- Ridiculous skin rash that covered my entire body
- Diagnosis of Celiac Disease
- Organ transplant
- Hair loss (maybe not that big of a deal to some, but I am a girl…)
- Baseball-sized hematoma
So, it’s safe to say (at least I’m daring to put this out in the universe) that I believe the worst is behind me/us, and I can look back at those years and…grin? I don’t want to fully laugh for fear that karma might come back and say “Oh yeah? Add THIS to your list!” I CAN say that I have everything in the world to look forward to. 🙂 I also don’t want to scare anyone that might be reading this that might be early in their diagnosis of kidney failure/transplant process. This is MY list. Everyone is different.
As challenging as it was, 2014 was a great year! On a more positive note, I’d like to also list all the small, yet amazing things I’ve been able to accomplish since my new kidney came along:
- No more dialysis! YAAAY! No, seriously…YAAAAAAAAAAAAAAAAAAAAAAAAAYYYYYYYYYYYYYYYY!!!
- Travel to Boston, finally!
- Travel to Austin, finally!
- Travel to Europe for the first time
- Progress in getting my career kick-started again
- Tennis lessons
- No emergency trips to the hospital
- Brought my A1C down 3 points (diabetes blood result)
- Been more active in the non-profit community
- Grew my fingernails out, finally!
- I have fabulous eyebrows, finally!
- Did not even catch a cold! (I just had a case of the sniffles last week, but seeing how many flu epidemics I’ve been hiding from, this was a huge feat!)
I’ve made several other personal accomplishments as well, however these are the main items that I’m proud to list/publish. Some are baby steps to getting back to what I had before, but it’s a huge start! I don’t think I’m going to make any New Year’s resolutions this year since I feel most items still left on my “to do” list are more goals I still need to accomplish rather than resolutions for one year. In the meantime, my door has been swung wide open for new opportunities, and I plan on attempting as many as I can! 😛
Things I’m thankful for today:
1. I made it a year!!!! Hey Kirby…it’s yo’ birth-day! We gonna partay like it’s yo’ birth-day!
2. American food. I have to say that it sucks being a Celiac. Especially when you’re traveling in a country known for their BREAD! In Paris, there were no crescents, no macarons, no flakey French bread sandwiches for me… just grapes and a handful of my backup GF pretzels when I got home. It was SOOOOO good to get home and have options again!
3. The discovery of galettes – a naturally gluten free crepe that is apparently found all over Paris! Yes, I had one. Yes, I got a bit glutened. Yes, it was absolutely worth it. 😉
4. DuoLingo. Ok, so I was dying that I had the first chance to really use all the French I spent years learning…and I had forgotten it all! I even had a friend (Elissa – shout out!) send me these amazing French lessons I could use to polish up, and I never got as far as I wanted to with them. However, with one month to go before our trip, I was able to get a good quick refresher-dose using an app – DuoLingo – a bit every night. It made me look a little less foolish when I scrambled to say “The red shark ate the dolphin in the library” in everyday conversation!
5. Timing. We were pretty close to the Paris terrorist shootings the day they started and I’m extremely thankful that we were as quick to act as we did to leave the city. I’m thankful that we had no issues with transportation getting to and leaving the train station, and I’m thankful that we made it back to the US unharmed. I’m also very grateful for all of our friends and family who checked in on us to make sure we were ok! Thank you!
6. Opportunities. Being able to make a trip like we did with my family and friends was truly a lifetime experience. Thank you Mom, Dad, Barbara, Aunt Ber, Aunt San, and Roy for making it possible! The memories are going to live forever. 🙂
7. Robert, my hairdresser, for making all my new baby hairs look like they finally belong… with the intro of baby bangs. Can’t say I’m a huge fan of them, but it’s something new, fun, and I’m workin’ with what I’ve got. LOL!
You know that infamous “Jar of Rocks” analogy that’s used to describe time-management and life priorities? The first time I heard it in college, it instantly became my favorite analogy EVER! Who came up with that? I want to meet him and have his babies! It was so new, clever and innovative to me, I thought it was genius. Such a novel Jack Handy moment… not knowing how extremely popular and probably overused it was already by then. LOL! (For the record, I thought the same thing about the “When life gives you lemons” quote until people kept finishing my sentence every time I used it. Oh naivety, how I miss thee.) Well, I still think the lesson is genius, and I still focus on its message whenever I get overwhelmed or wander a little off-path, and so far, it’s led me true.
For anyone who’s been under a rock for the last 30 years (see what I did there?), the lesson is that if you try to fit all of your smaller, less-important priorities (ie. the pebbles and sand) into your life (jar) first, you’ll never be able to fit your larger, more-important priorities (the rocks) into your life. However, if you focus on your larger rocks first, everything else will easily fall into place – with room to spare. Well, I’ve taken the time to prioritize my larger rocks (like, oh, staying alive, keeping my job, loving my family and friends) into my snazzy little jar, and we’ve already discussed the pebbles I’ve squeezed into it (dealing with/conquering the medication/side-effects, travel, food), so today, I’m all about the sand! I just wish that entailed lounging on it next to a much larger “jar” of salty water…in Hawaii! 😀
It’s always the little things in life that fascinate and thrill me. As an event planner, yes, I not only plan for the final event, but have an extreme amount of small details that have to be completed in order for that large event to take place. People forget those smaller items exist (“Oh, wait, we need to order bottled waters for the booth staff?”, “You mean, someone has a nut allergy, so we can’t eat at XYZ restaurant?”, “I forgot that Joe Schmo just broke his leg, yes, let’s have our training on the first floor!”), but those details excite me! It’s the same way in my life outside of work. I’ve complained about the side-effects of my transplant medication, but honestly, it fascinates me that such a small little pill can make such an obvious physical change to someone! While most people would not have noticed a few extra hairs added to their eyebrows, I celebrated! 😀 Well, here are some additional small bumps and accomplishments that’ve been made since the last post:
Weight – Ok, so this is a bump, and not one I’m excited about, but when I first started my meds, I thought I was maintaining my weight. Turns out my body was just slowly filling out as it began to properly process my food/nutrition…which is absolutely a good thing. Problem is, it hasn’t stopped! LOL! I’m now about 10-15 pounds heavier than my usual weight. My doctors have told me that this is normal, and due to my steroids. Apparently, one mg of Prednisone/steroid adds about one extra pound. which sounds pretty much what my weight/dosage ratio is at right now! As I mentioned earlier, isn’t it crazy how such a small amount of medication can change you so drastically? So, the sand I’ve added to my jar has been to keep my weight maintained at this weight or less until I can finally get off the steroids completely (which I hear they typically do about a year post-transplant). I’ve stepped up my excercise, have started to try running, and am focusing on my tennis to help me stay fit.
Hair – Another bump, figured I’d get these out of the way first. Whereas my eyebrows have been Kick A** lately, the hair on my head has been disintegrating. What??? I have literally been shedding like a dog! I find clumps of hair in my shower, in my brushes, when I blow dry it… I have so little of it on my head that if a light was shining behind me, I’d just have an “aura” of what might be a hair floating around my head…with a perfect solid outline of my skull. So, enter the sandman with Biotin and Nioxin shampoo. I just started the shampoo, so I can’t report on it’s success yet, but I’ve heard it’s pretty good stuff. I just don’t like the minty smell… reminds me of a dentist. I don’t want to smell like a dentist. The biotin, though, has been amazing! I’ve got baby hairs all over my hairline, so it’s definitely growing back. My sister teases me because there is one particular patch on my left side that sticks straight up, as if I cut it that way…a side-ways, short mohawk of sorts. Even my hairdresser asked politely, in his sassy way, “GIRL, WHAT are you DOING?” Whatever works, Robert. Whatever works! 😛
Nails – As an added benefit of the Biotin, one of my lifetime New Years goals (which I never made public) has finally been achieved! I’ve quietly been getting my nails done to prevent me from chewing them anymore, and the Biotin took it from zero to 100 (miles? Inches? Who cares, you know what I’m trying to say…) in a few short months! I’m now FINALLY the owner of beautiful long nails that actually go past my fingertips! 😀 You have no idea how proud I am of this…I have seriously NEVER had fingernails I wanted to show off in my LIFE!!!!
Involvement/control – Lastly, my most important addition to the jar, which should actually be more pebble-sized than sand, is the fact that I’ve been extremely focused on educating myself on how to improve myself, which has inadvertently caused me to be more involved in the support groups and community events supporting my issues. I’ve joined the Dallas GIG group (the Gluten Intolerance Group) which meets monthly to discuss new products/findings in the Celiac/Gluten Intolerance community via speakers, etc. I’ve also attended several speaking events about how to better control your blood sugars and preventing further complications. It’s all proven extremely helpful, and I strongly believe that just learning what I’ve learned in the last year has made me a much healthier person all-around! My blood-sugar levels have become a LOT more stable, and when it isn’t, I know why….which is a puzzle my doc and I have been struggling with for YEARS!
There have been several other landfills I’ve been making to my jar, of which I’d have to share in another post to come soon, but these are the ones I’ve been most focused on/proud of to date. I want my jar to be as unique and fun as possible to view once everything is finally stuffed into it, which means there are going to be lots of adjustments, changes and chances to take. I’m ready for that adventure, and I can’t wait to see the final product! Wait…no, I don’t want to see the final product… not ready for the “final” anything just yet! LOL! I’ll settle for the ongoing metamorphosis of whatever this jar turns into… a large bowl? Maybe it’ll be a vase? Or a human-sized aquarium…
Things I’m thankful for today:
1. Being able to travel – I’ve now not only been able to get out to Boston, but I’ve also already made a few long-overdue trips to Austin! I love being able to jump in my car and just take off if I wanted to. I also had an amazing time catching up with all of my friends there… some of which I hadn’t seen in almost 14 years! Juh, love you, you’ll always be family to me and one of my best friends for life. 😀 Dave, you always have my back, and make me feel loved… love you too! Maggie, your friendship has always been special to me, I always feel like no time has gone by when we hang out. I hope that never changes! Rich and Pruh, I had so much fun seeing ya’ll again… so wish we all didn’t live so far apart! Long live “the Fam”!
2. Sense of Humor – I heard a speaker last week talk about how she was dealing with her Celiac issues, and she literally had me crying I was laughing so hard! If you can’t laugh at your difficulties, you’re in for a very miserable life. I’m so glad I’m laughing! 🙂
3. Networking – I’m convinced that sometimes it’s not WHAT you know, but WHO you know that gets you through life. When I was desperately looking for another endocrinolgist (a story worth another post), several people stepped up with options for me to try and excellent recommendations. Thank you! It makes searching for a needle in the haystack that much easier!
4. Santitas Tortilla Chips – for coming up with a chip that rivals Julio’s…and is easier to find! 😛