It’s a beautiful day…don’t let it get away!

GF Jesus comic

Wow!  Time flies when you’re having fun, doesn’t it?  I can’t believe it’s been more than a month since my last post!  Not that I didn’t warn ya… I knew my posts would be less frequent, but it still feels as if I’m falling behind.  🙂  The good thing is I only have positive things to report!  So, let’s get this party started!

First off, I now only have to go to my transplant clinics once every 3 weeks!  LOVING the fact that I’m not having to be out the door at 6am to drive out to FW all the time!  Not missing the drive or traffic, but I am missing the hospital staff a bit.  It’s funny, but Baylor All Saints has become a bit of a second-home for me.  The staff is like family, looking out for me and getting excited for me and my progress.  The big waiting room (where I’ve spent many, many, many hours), is somewhat comforting.  So, it’s a bit sad when I walk in and realize that it’s becoming less of a frequented “hangout” for me, and more of a home for the others that are now “living” there.  It’s brought to my attention how large the turnover is in the clinic and the awareness that there are ALWAYS people needing transplants and going through the same things I did.  It also gives me more appreciation for the nurses/doctors who have to work there because it’s not just me who gets their full-attention… every single one of those patients get their full-attention and shared excitement and care.  This is one very large family!

Another big piece of progress is my vision!  The doctor I saw for my 2nd opinion (for my Retinopathy) gave me some good feedback.  He has since given me some additional laser therapy and told me I also had a small cataract in my left eye (my bad eye).  Which is not good news, but it’s an answer with a solution, which I love to hear.  Also, when I had my vision screening, they told me my vision has shown VAST improvements!  I have a feeling this is due to the lower doses of prednisone I’m taking…  So, we’re making headway.

I’ve also started my progress into getting a pump.  Right now, I’m getting everything set up for my CGM (continuous glucose monitor) so I have a better report of my sugar levels.  When I got my blood test results back from my endocrinologist (my diabetes doctor), he was saying I still needed to get my sugar levels down, however, I was more focused on the fact that I had actually managed to bring my A1C down two whole points!  (For anyone with diabetes, this is a pretty big accomplishment!)  An A1C test shows what your average blood sugar level has been for the last three months.  Mine have been pretty high due to the fact that it’s so brittle and hard to manage.  A level of 5 -6 is normal – mine had been 10 for years, and my doctors and I have been struggling with this for a long time!  This time, it was an 8!  Despite the fact that my prednisone was sending my sugars into a crazy whirlwind, despite the fact that my body was going haywire figuring out what this new kidney is doing there…and all the meds, despite the fact that I’ve had to readjust my entire diet…again, and despite the fact that my diabetes hadn’t been my first priority for the first few months of the year, I STILL did what seemed impossible and lowered it a full two points!  I’m sorry doc, but I’m actually pretty impressed with myself.  Now, I just have a few more points to go, and I’ll be set and ecstatic!

As for the kidney, it’s still keeping up!  The doctor did inform me that he noticed a “flushing” sound where my kidney was placed.  Apparently, the blood vessel that attaches the kidney to my body has started to constrict a bit.  He says this is not uncommon, but when it does happen, it causes some turbulence with the blood stream, and if it’s not monitored, could close up.  Worst-case scenario, he says they could put in a stent to keep it open, but we’ll watch and see how it does.  The next time I go in for clinic, they are going to schedule me for an ultra-sound to see how it looks.  Other than that, I’ve been cleared to start working out (thank GOD since my appetite has definitely added a few pounds!) and I’m now allowed an occasional drink.  Not that I crave/need them, I’ve actually gotten so used to not drinking the past few years, that I don’t really miss it!  I will admit, though, when the weather is nice out and I’m sitting on a patio with friends, that margarita sure tastes good!   😉

On the Celiac front, I have to announce that May is National Celiac Awareness Month!  Side track…I love how all of “my” months are all one after the other:  March – Nat’l Kidney Awareness, April – Organ Donation Awareness (which I failed to blog about, but I did promote by getting a few co-workers to get Taylor Blue nail polish and paint-it-forward at their next mani-pedi!), May – Celiac Awareness…at least you don’t have to hear about Diabetes Awareness until Novemenber!  LOL!   If I worked non-profit, I’d be a busy girl.  Sooooo, back to the Celiac…. there are actually a lot of news reports announcing some positive progress in a search for improved treatments and a possible cure!  Some media sources even say that the progress already shown could lead to a cure in a hopeful 5 years!  Can you even imagine??  Well, for those of you who don’t have to deal with it, probably not, but anyone who has…the angels will be singing some incoherent opera tune that will fill our heads for months!  What I’ve learned this week, though, is that although Celiac only effects about 1% of the population, it effects 10% of all those with Type 1 Diabetes!  Wow!  It’s like someone out there was saying, “You know what?  They don’t have enough restrictions with sugar, let’s throw flour into the mix as well!”  Well played, Mother Nature!  🙂  So, to help make life a bit easier for all of us stuck in the GF zone, and to help bring some awareness to our office, I donated a panini grill to our cafeteria (with a roll of gluten free stickers to make sure it’s labeled properly) and asked if the chef could include it in their Sandwich line.  The only caveat is that she train her staff to know that it’s only for use with gluten free bread (which they are now offering).   Now, those in our office who can’t have a normal sandwich, can safely have a grilled, hot, and yummy sandwich of their choice with no fear of cross-contamination!  Of course, I went down there today and it’s still in the corner unused (in the box) because they have not let anyone know it’s there.  Anyone in Marketing knows word-of-mouth can only get you so far, so I’m hoping they actually take that next step and announce it’s arrival!

So, that’s the up-and-up for now!  I’ll sign off until next month!


Things I’m thankful for today:

1.  My mom.  She has done so much for me and has always been there through thick and thin.  She’s always giving of herself and her love, and has taught me how to be a strong, independent and intelligent woman.  Thank you and Happy Mother’s Day mom!  Love you!  🙂

2.  Nex-gen nail treatments.  I’m finally attempting to grow out my nails again!  I stopped using acrylics b/c they were so damaging on my nails, but this Nex-gen product is supposed to be a lot healthier for them, so I can finally have decent fingers again!

3.  Freedom to travel!  I am finally free to roam the cabin now that the seatbelt light has gone off.  My tickets to Boston have been bought, and I’m actually going to make that long-awaited trip to see Steve!  😀

4.  Paper clips.  The zipper on my pants is broken and won’t stay up.  I keep forgetting to take them in, and don’t remember the zipper until I’m walking into the office with an open fly!  I’ve got a paper clip holding them up right now and it’s saving my modesty.


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