New CF issues

CFRD...Cystic Fibrosis Related Diabetes.

As we, with CF, age there are many complications we may never have dreamed about before.  As many are probably aware, CF patients are getting older...more than half of all CF patients are now over the age of 18.  Because of our malnutrition and breathing complications, our bodies tend to experience more issues as we age and we experience these issues at a younger age than a healthy individual.  It is wonderful to see us all becoming adults and living happy lives.  But with that we still have to worry about our health.

I have recently been diagnosed with Cystic Fibrosis Related Diabetes.  I was on the very edge of being diagnosed for quite some time and was always hoping I could hold it off as long as possible.  But life's funny like that.  As we say..."if you want to make God laugh, tell him your plans."  Right now my diabetes is extremely mild, we caught it very early because of all the monitoring.  Well actually, that's a lie, sort of.  I went to my physical with my PCP so that I could get a referral for my (now past) sinus surgery...this was several months ago. Well at my physical, my doctor gives me the order for blood work and says, you can come back for that since I know you have to get back to work.  Well I knew I wouldn't get back anytime soon and I wanted to make sure I did everything right for this surgery. I mean, that's the whole purpose of getting my physical...to make sure my body was up for the surgery.  Well the blood work showed an elevated Hemoglobin A1C (or HBA1C).  This blood test measures your red blood cells over the prior three months and is not often used for CFRD diagnosis because the red blood cells in CF patients don't stay healthy long enough.  BUT if you notice this number trending higher, it can signal CFRD.  Mine has always fluctuated between 6.0 and 7.0...the cutoff is about 6.5.  The note my PCP wrote on the results page was something like "your A1C indicates Diabetes, please see your endocrinologist to discuss treatment options."

So I emailed my Endocrinologist...She is/was conducting a study with other CF patients to see if there are better ways to diagnose CFRD.  The ultimate test is called a Glucose Tolerance Test (GTT), which by the way is MISERABLE, namely because you are making a CF patient fast for 12 hours before.  Then you drink this super sweet, almost like flat orange soda syrupy stuff and they check your blood sugar every half hour for 2 hours  So my Endo got me into this study and I think I am like patient #3 or something.  The study starts off with a GTT and other blood work and then you wear what's called a Continuous Glucose Meter (a device the size of a quarter that measures your blood sugar every 15 minutes) for 2 weeks.  I can't see the results in real time, but I was given a hand held meter to check my sugars before and after meals.  At the end of the two weeks, you peel the CGM off your arm and send it back so they can analyze the numbers.  So my results showed I go pretty high after breakfast and lunch.  Like any number consistently over 180 is too high.  So my Endo prescribed insulin to take in the mornings and yes it's a shot.  The pills don't typically work on CF patients.  It's not a terrible pain, but a bit of a nuisance.

I can't say I'm surprised with the diagnosis, I saw it coming for a while and was kind of just biding my time and enjoying life.  The problem with CFRD is that it's not quite Type 1 Diabetes, but also not quite Type 2.  With Type 1, your body just doesn't produce insulin, and it's usually diagnosed in childhood.  It is ONLY treatable with insulin.  Type 2 is more prevalent in people with poor dietary habits or overweight people. For this type it can sometimes be controlled with diet or with extreme weight loss.  CFRD is kind of a mix especially with me at this point.  Right now, clearly my body is producing some insulin because I don't need to give myself shots with every meal.  And even sometimes with breakfast, I probably don't need it.  Or if I exercise, I don't really need it.  My body just isn't producing enough or not releasing it in time to reach the meals I've just eaten. My diabetes will not likely go away, it will likely eventually get worse and I will probably need insulin with more meals.  Some people with CFRD have it full blown needing insulin ALL the time right when they are diagnosed, some take their time to need it all the time.

One thing that has surprised me is my reaction to the diagnosis.  I hope you've read this far, because this was the original intent of this post.  I started this insulin dose May 1 and have not told anyone except immediate family.  I don't know the protocol for telling someone you have a chronic illness this late in life.  CF has always been there, I was six months when I was diagnosed, so it's something I've always known, not a surprise.  How do I break it to the people who love me that I also have this other chronic disease now?  Not to mention, one of the difficulties with CFRD is that we still have to maintain our caloric intake in order to maintain our weight.  So when we get CFRD, we don't have to adjust our diets, we adjust our insulin dose.  I don't want to be judged because I still have this gigantic appetite.  And I feel like when I start telling people, they're going to think less of me.  They are going to think I'm taking advantage or pushing buttons that should't be pressed, taking risks and using insulin as my only way out.  I didn't think it was this hard to be diagnosed with a chronic disease.  There are a whole hell of a lot of emotions running through my brain.  Like, I haven't even told my boss.  If anyone should know, it's her.  If something goes wrong and I am sick at work or having low blood sugar how is she going to help me if she doesn't know.  I'm so baffled that I am made so speechless by something I know so much about.

EDITED TO ADD:  I also don't want people feeling bad for me!  That's a huge part of my anxiety over telling people.  I don't want the sympathy, the "oh you have CF AND diabetes.  That must suck."  I don't know how to get over this feeling.  I don't want my friends and family to worry.  I don't know, I guess I kinda don't feel like its real yet.  It's such a small need of insulin that I don't feel like it's really necessary to tell people.  Hmmph.  Tips and tricks would be appreciated if you've been in my shoes! :) 

*****

If you have CFRD or any other chronic illness and were diagnosed later in life, how did you handle it?  How did you bring up the topic?  Would love to hear some of your tips and tricks!

Yarn Love, part 1

So I said a while back that I wanted to blog more about my life outside of CF, so this is my starting point.

I have been doing a lot of knitting and crochet lately and I just find it hard to sit down and type out my thoughts.  I feel like I'd much rather be working with my yarn.  ;) But I've also been following a lot of yarn related blogs lately and I really like what I am seeing and would love to contribute to the yarn blog world.  So I thought maybe I'd "try" to alternate a crafty post with a health related post...or maybe focus more on my crafty things than my health issues at all.  We'll see how this works out.  In the next few posts, I'll be sharing my journey with yarn art.

Let me get started by saying, I am not an artsy person.  I can't draw or paint for the life of me.  Art class in school was more a time for doodles and fooling around, it was never my strong suit.  When I was in college my core group of girls and I dabbled in scrapbooking, and card making.  I loved doing all of that because I didn't have to draw my own stuff, I could just use stamps and stickers and such.  I spent a lot of money and bought a lot of the things.  But I just wasn't loving this craft.  It was expensive and took up a lot of space which I didn't quite have.  I still have a lot of the stuff and will use it for the card stock or the pretty paper designs, but not much more.  I actually gave a lot of it to my mom because she has more time.  If I have the space some day, maybe I can go back to it.

I ended up going an extra half year in college to do my student teaching...so I graduated in the spring and then went back in the fall the same year (the next school year).  I had a whole new crew of room mates as mine had all graduated and started work.  So clearly as you'll find out in the next sentence...we were huge partiers.  LOL...jk.  One Saturday morning...yes, this is what we did for fun...we went to Walmart and bought yarn and knitting needles.  Then spent the rest of the day learning the basic knit stitch.  One of the girls in this crew (remember, not my original crew, but my new crew) had been working on a cable scarf in a dark blue and after much discussion, the other 3 of us decided we wanted to learn too.  I bought two skeins that did NOT match together at all.  One was yellow cotton yarn and one was a light purple fluffy yarn.  If you know anything about the fiber content of yarn, these two definitely did not go together.  I'll have to see if I still have the yarn and post a pic. (UPDATE:  found the yarns)

 As you can see, the colors aren't too terrible together.

BUT, if you look closely at the thickness, they really don't go well together.  *lesson learned*

So I started doing a scarf using both of those colors.  Scarves are great ways to learn because it's mostly straight and can be done rather quickly.  Long story short, I never finished that scarf, it was too hideous.  LOL.  Because the purple is so much thicker, the purple stripes were wider than the yellow and the scarf wasn't really wearable.  Years later, I ended up ripping the whole thing out and saving the yarn for something else.  Keep in mind, this was over 10 years ago.  Yes, I've kept this yarn, maybe out of sentimentality, maybe because I can't bear to part with yarn I may someday use.  Whatever the reason, this is what started my love of all things yarn related. I don't remember what my next project was, but I knitted many baby blankets along the way and ended up teaching myself the many intricacies of knitting, including different stitches and non straight edges.  I'll continue sharing my journey in later posts.  Keep your eyes peeled and thanks for reading!


For more pictures of current projects, visit my Facebook page https://www.facebook.com/yarncraftsbycait/ or follow me on IG @cpell215.

Disney and an Update

Holy Cow!  I can't believe that it's been half a year since I posted an update.  LOL.  I said I wanted to blog more, and then I wait six months...woopps.

So as of last time, I was in fits of anxiety.  And was also having some health issues, lung wise.  I'm happy to say that those problems have resolved after several medication issues, changes, steroids, drug trials and a wonderful vacation!  It's very ironic because I was quite sick at the same time of year the year before.  Anxiety and lung issues, I mean.  October/November 2015 and 2016 I ended up on steroids...literally the same week both years, there must be something in the air or maybe in our heating systems (either at work or home) that sets me off.  After a very tumultuous year with our fertility issues, we decided to put that on hold (more on that later) and plan a vacation.  So we booked Disney!  Wahoooo!! Literally, my dream and I'm not even kidding.  Yes at 32 years old, I was like a kid in a candy store.  But I got quite sick about 3 weeks before.  We didn't even know whether I'd be able to go until 2 days before.  I work for a travel agency so I was able to book it all myself and get credit for it.  But the Thursday before we were leaving I was still coughing a TON and wasn't sure how I'd do on the plane.  So I finally spoke up to an agent in the office...all the while thinking to myself why didn't I get the cancel for any reason insurance.

BUT the good thing about Disney is that you can pretty much postpone at the last minute with no penalties.  So at worst, we would have simply postponed.  Same goes for Southwest plane tickets as long as you haven't "checked in" to your flight.  So I think overall, that gave me much more courage and ways to deal with the anxiety...finally voicing my concerns and talking them over.  I was pretty sure I'd be ok once we got down to the nice sunny Florida weather.  So I left work early Friday...did early voting, and got my nails done.  And I was feeling good, but I still (even to this day) have the phone number for Disney, just in case we had to postpone.  LOL.  I'll add some pics to the end of this post.

ALSO, and really the point of this post...at the time of my last post my sister had just told me she was pregnant.  It wasn't "Facebook Official" as they say so I couldn't really share it here.  Which, I think that led to some of my anxiety as well.  Lots of emotions were floating through my brain that I am not going to get into here.  My sister is very aware of my situation and extremely supportive...of which I am grateful.  I think she was afraid to tell me because she didn't want me to be upset or jealous.  And as anyone who's been through infertility knows, its hard.  It sucks a lot of times.  And its painful.  I was so sad for me, so sad for her and I just couldn't process a lot of that initially.  I still tell her that I feel awful that she couldn't be happier and that I couldn't be happier.  It's just such a delicate topic.  I know she understands and I know she didn't mean any harm.  I wish it didn't have to be this way.  I wish it wasn't such a delicate place.  I wish that she could have shouted on the rooftops or done some over the top announcement...but I can't predict how I would have reacted.  And I am grateful she didn't do that, but I wish she could have.

I am sure my reaction wasn't what she expected.  I said "oh, I pretty much knew."  LOL.  We've talked since then and of course I don't think I showed any jealousy.  I have told her a few times that I am sorry you couldn't be more excited.  I'm sorry I couldn't be more excited...but I am so thankful that she doesn't let that bother her.  That no matter what, she understands and will always support me.  She cares about me and my feelings and I am happy to say that jealousy didn't last long.  ;)  Of course, another beauty I get to love and cuddle and spoil.  I cannot contain my excitement at this point.  I want to meet this little nugget and I will be there as soon as I get that call.  It is such a blessing to be a cherished Auntie and I am honored to be one.  This baby will be the first on my side and although I have other nieces and nephews on my husbands side, it's different when its your own flesh and blood.  We grew up together and we will always have each other.  She's due any day and I am bouncing off the walls with excitement.  Last night after we went to bed, we heard my phone buzz across the room...so I leaped up to check, but it was just my mom...with no baby news.  bahahaha.

I'll post more updates on my health and emotions at a llater date.

Our resort. Dreamy and peaceful. And perfect weather, literally every day. It almost made me want to move to Florida. Then I remembered how humid it gets. 

We asked one person to take our pic at Epcot and she cut off the golf ball. *insert eye roll* It's a great picture but kind of missing the point. Haha. 

I shocked myself by doing Tower of Terror. Sat outside for 15 minutes trying to talk myself into it. LOL. 

This was at Universal, but holy cow. JUST like you'd imagine Hogwarts. Speechless. 

Everything was decorated for Christmas even though it was early November. So picturesque and so "Disney". Pure love.