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My Blackberry

September 14, 2008 – 7:35 am

How on earth did a Crackberry help me in gaining control of my diabetes?  Yea it sounds strange, but I was always out of luck when I was out and about and I was hungry.  I admit I have a horrible memory and am horrible with remembering how many carbs are in foods but now I have a handy lil friend!  On my Blackberry I can look up CalorieKing.com, or resturant websites to find the amount of carbs that are in the foods I am consuming on the run.  Yea it takes a minute or two to look things up, but considering the consequences the benefit has been priceless!

Salty | Challenges, Cystic Fibrosis Related Diabetes, diabetes | Comments (2)

The evil high fructose corn syrup

September 13, 2008 – 7:23 am

Before I moved in with mom I had nearly eliminated high fructose corn syrup from my diet at the suggestion of my doctor.  At first I didn’t believe that it would make me feel better, but I am sure that was just my resistance to change and convenience.  This is difficult to do, but it is possible.  I already read almost every label I bring into the house because THBQ (a common preservative) causes me horrible asthma (which is apparently common).  I switched from drinking soda with HFCS to soda with cane sugar.  I found ingredients on fast food websites so I could make smarter choices while I was out and about.  Instead of carb loaded snacks (like Chex mix) I kept fruit on my counter, easy at hand and yummier to boot!  Whole wheat instead of white, brown rice instead of white.

Now, if I eat something with HFCS in it I can actually taste it.  It tastes nasty, little did I know! Wendy’s burger buns have it.  Most all sodas and lemonades at restaurants have it (I chose iced tea or water now).  Subway’s whole wheat bread has it, but the white does not, go figure!

After I eliminated HFCS in my diet my BG levels became more normal, I was not as tired or exhausted and my lungs even felt a little better.  Now that my diet is not solely in the hands of my own, I am eating more HFCS again, I am exhausted, my lungs feel cruddier and my BG levels are soaring then tanking or just acting like a bizarre rollercoaster.

Salty | Challenges, Cystic Fibrosis, Cystic Fibrosis Related Diabetes, Nutrition | Comments (0)

My insulin pump

September 12, 2008 – 7:02 am

This tool is priceless for people (with CFRD) with the crazy nutritional needs of CF.  When I sit down to eat, I never know how much I will eat because my tummy is so moody.  I can bolus a conservative amount of insulin at the beginning of the meal and if I happen to eat more I just push a few buttons and enjoy.  This is soooo much easier, convenient and discreet than dragging out an insulin bottle and syringe or an insulin pen and giving myself multiple shots during a single meal.  Also it gives me the flexibility with my eating habits.  I found that previous to my pump I would skip snacks or meals because I just didn’t want to give myself a shot.  Now I don’t have that excuse and have ended up gaining a little, much needed, weight.

Yes it is a pain in the rear lugging around my ’90’s drug dealer style pager of an insulin pump, but it has been so worth every bit of frustration.  Even my friends tease that I could thread the tubing through some chain for an added effect. (nice, lol)  I wish I had some pics of my pump but they are stuck on my old computer stuck in storage right now, and who knows where my camera is.  I have been using a Minimed 522 pump since June and have only recently started using my continuous glucose monitor.  I was able to lower my BG with out the CGM.  Although recently the CGM has become VERY handy since I am not so much in control of my food intake.

I do have to say that the tubing that runs from my “pager” to my belly is a pain in the arse.  I get tangled in it, it never seems long enough, and my puppy’s legs get tangled in it.  I was hesitant in getting one of the tubeless style pumps but they seemed so big and obtrusive.  I haven’t tried one of those, but if I was in the market for a new pump I would look a little closer at them.

Medtronic who makes my Minimed pump has been a spectacular company to work with.  They provided me with excellent training, both via the computer and also in person.  Rumor has it they will be coming out with a tubeless pump next year and possibly for a small-ish fee I can trade mine in.  But it is just a rumor for now… (fingers crossed).

Salty | Challenges, Cystic Fibrosis Related Diabetes, continuous glucose monitor, diabetes, insulin pump | Comments (0)

Gaining control

September 11, 2008 – 6:41 am

Thanks everyone who pitched in and helped me purchase my insulin pump and continuous glucose monitor.  I, for the very first time since being diagnosed with CF related diabetes, have my blood glucose levels under control!!!  What this means is I am at a much much reduced risk of the complications of diabetes such as blindness, kidney problems, heart disease, nerve damage and most importantly due to my CF, risk of infection.

For those familiar with diabetes I was able to lower my A1C from 8.0 a few months ago to 6.0.

How did I gain control of my diabetes?  Three things had a large hand in it.

1.) My insulin pump.

2.) Eliminating high fructose corn syrup from my diet.

3.) My Blackberry, where I look up carb counts of foods when I am out and about.

In the next few days I will tell you about each….

Hope all is well!

Salty | Challenges, Cystic Fibrosis Related Diabetes, diabetes, insulin pump | Comments (1)

Checking in

September 10, 2008 – 4:41 pm

Well, it has been quite a while since I have posted.  Here I thought I would have all the time in the world while I was unemployed to work on my blog, but I was soooo wrong!  :)

This coming Monday I will be starting my new job, working with pulmonary research data at a children’s hospital.  I am moving, which is exciting, but moving has become a huuuuge pain in the patootie.  I am having to sell my condo in Northern Colorado which I am not too happy about since I loved that little place, but hopefully I can find something even better in my new town (If you know anyone who may be interested please let me know).  In the mean time I have moved in with my mother which is proving a huge challenge of it’s own.  No way I can afford two mortgages, so I must be patient.

The hardest part of living back at mom’s is food.  It is difficult living with someone who does not understand diabetes or even carbohydrates.  This house is filled with carb packed foods, bread, doughnuts, halloween candy…  high fructose corn syrup.  Every where I turn around I am stuffing my face with snacks, and not nutrition packed stuff like I had at my house.  The killer for me is the HFCS, for some reason it makes my glucose levels go crazy high then I have a low crash hours later.  But I can’t resist the stuff when it is right under my nose screaming EAT ME! EAT ME!!!  Before moving in with mom I had nearly eliminated HFCS from my diet, but now I am off the wagon and my BGs are going crazy again.

All the swings in my BG levels are taking a toll on me.  Not only am I exhausted from the wacky sugars, but my lungs seem to be taking a small down turn, my allergies are going completely crazy and my oxygen levels are starting to tank (running about 90% on room air).  This just sucks.

I have been seeing a lot of commercials on the tv saying that HFCS is natural and is just like sugar… ummmm… I would have to disagree when I look at how it affects my BG levels.  I can eat sugar, take a bolus of insulin and if I calculated the number of carbs correctly, my BG levels are right where they should be.  Set me down with some HFCS and my body goes crazy.

Anyway… I guess this is just a little update on the going’s on of Salty.  Hope all is well with you!

Salty | Challenges, Cystic Fibrosis Related Diabetes, Life in General | Comments (1)

“Normal” blood glucose levels

August 25, 2008 – 3:29 pm

I think this will be very helpful for those who suspect they may have diabetes.  I stole it from my Continuous Glucose Monitor class:

Target values from the American Diabetes Association (ADA)/American Association of Clinical Endocrinologists (AACE)

Fasting/before-meal glucose: 90 mg/dL to 130 mg/dL (5.0 mmol/L to 7.2 mmol/L) (ADA);
<110 mg/dL (6.1 mmol/L) (AACE)

2-hour after-meal glucose: <180 mg/dL (<10 mmol/L) (ADA); <140 mg/dL (AACE) (<7.7 mmol/L) (AACE)

A1C: ?7.0%(ADA);?6.5%

The chart below provides the ADA recommendations for glucose levels in children. This year the A1C recommendation for adolescents and young adults has been lowered from 8.0 last year to 7.5

Glucose goals vary by age group because children have a higher rate of “hypoglycemia unawareness” than adults.

Age (years) 0-6 6-12 13-19
A1C level <8.5,>7.5 <8.0 <7.5
Fasting Glucose 100-180 90-180 90-130
Bedtime Glucose
(mg/dl)		 110-200 100-180 90-150
Rationale High risk and vulnerability to hypoglycemia Risks of hypoglycemia and relatively low risk of complications A lower goal (<7.0%) is reasonable if it can be achieved without excessive hypoglycemia

Benefits of Improved Diabetes Control

  • Reduced risk of high or low blood sugar levels (hyperglycemia/hypoglycamia)
  • Improved sense of well-being
  • Lower risk of complications

Having near-normal blood glucose reduces your long-term risk of:

  • Retinal eye disease by 76%
  • Nerve disease by 60%
  • Kidney disease by 56%
  • Heart disease by 42%
Salty | CFRD Facts, Cystic Fibrosis Related Diabetes, continuous glucose monitor, diabetes, insulin pump | Comments (0)

job and A1c

August 20, 2008 – 12:11 pm

Update: Family would like to keep their privacy about my nephew, thanks to my psychotic ex-step-mother (she has been disowned by the family and don’t want her knocking on the door again).

Now, about me…
Change.  That’s the word of the week. :)  I have been offered an awesome job where I will be working as a database coordinator dealing with research and Cystic Fibrosis!!!! How perfect is that?!  I am going to have to move back to Denver, which I am overly excited about.  I miss home.  But I have no idea where I am going to live which has me a bit freaked out for the moment.  The unknown always stresses me out.  I’ll be ok, just a little edgy and sleep deprived for the next few weeks.

For all who helped me out with my medical bills, I can’t thank you enough!!  For the first time since I was diagnosed with diabetes (like 7 years ago) I am FINALLY in control of my blood glucose numbers!!!  My A1c level is 6.0, down from 8.3 a few months ago.  This means I am no longer in the super high risk category for horrible complications.  I am feeling a TON better too.  Three things that have really helped me get control was my new insulin pump (Medtronic Minimed 522), a Blackberry (where I can look up food carb counts when out and about), and the almost complete elimination of high fructose corn syrup from my diet.  I want to write a post about each of them, how I did it, how it helped and such, so stay tuned! :)

Salty | Life in General | Comments (2)

The rumors are true…

August 16, 2008 – 8:08 am

Maybe I should have titled this post “She is just trying to be loved…” or so that was her reasoning.

I am very very sad to say that Pepe/Gina/Blake has turned out to be a fake.  Those three names ARE the same person.  Not that we can believe a word that is said anymore, my friend chatted online with the “real” Gina last night after the fiasco really hit the fan, the one he as been chatting with for many months, possibly a year.  He sent me the transcript of their conversation as it went on.  This person my best friend has been chatting with/ talking to on a cell phone/ playing Scrabble with online for hours at a time/ sent gift cards to for food/ sent get well gifts too, admitted to being Pepe/Gina/Blake/Chippedaway/SaraM among several others.  Gina as we knew her, a super-hero Cystic needing/having a transplant, was a complete scam.  Gina, we are 99% sure that is her real name after our sleuthing last night, claims she is an empty soul, who fell in love with Paul/Q/Clamshellmuni, a fellow Cystic, and faked sick to get his attention, it grew and grew from there.  The photos on the FOP website was not Gina, we assume they are of an old friend of hers.  The photos I found after searching her address was Gina.  She claims she is going to seek help, but I can’t believe that since this has gone on for years.  Gina admits she posed as Blake, who would update Paul via cell phone or computer about “Pepe”’s supposed status.  “Blake” has been around the CF community for years, which may be where she has picked up her extensive knowledge of CF and transplants.  She claims she does actually have Cystic Fibrosis, but is in no where near a dire physical state as she lead us to believe.  At least that is her story now.  I am having a hard time believing any of this is true, except that I do know I have been sending my well wishes, my concerns, spending time worrying about this fake person.  Heck, I even stuck my neck out and stood up for her.  Thank you my dear friends who have helped to set me straight.  It is obvious Gina has no idea how many people she has affected, nor to the extent.  She seems mainly concerned that she will no longer be able to have that dream relationship with Paul now that she has been found out.

Now enough is enough!!!  I want to tell you all about how I lowered my A1c and how I am now FINALLY, after 7 years, in control of my CF related diabetes!  (I’ll post some pics to prove it’s really me! lol)

Salty | Life in General | Comments (4)

Sketchy findings

August 15, 2008 – 6:14 pm

So, I spoke with my best friend who sent “Pepe”/Gina a christmas present this past year. He still had her address. We looked it up and found the last name of the people who lived there “F…”, presumably Pepe’s parents. It is a very unusual last name, so I felt fairly confident if we found a Gina “F…” who lived in the same state it was probably her. I looked at the satellite imagery on google and saw the property to have a nice area of land probably nice for horses. I did a little google-stalking and found a Gina with that last name “F…”, who has horses with the same name as Pepe’s horses, and lives in the same state as Pepe. We found pictures, no clue how old they were, but they showed a very heavy set Gina “F…” on top of horses the same names as Pepe’s horses, taken by a person with the same first initial as the presumed father at the address my friend sent the christmas present to.

Gina on Gracie
A not so 100lb Gina on Gracie

My friend was given the name “Gina Johnson” for the christmas present, not “Gina F…”  but the address is of the “F…” residence.  I can not say 100% for sure that this large Gina “F…” IS infact Pepe, but we would love an explanation.  It is possible for someone to lose a large amount of weight if they picked up a bad lung bug that may lead to the need for a lung transplant.  If that is the case Gina/Pepe REALLY needs our love and support.  But we are a little cautious in our beliefs right now.

This has made us very concerned about the current accusations flying about. We no longer know what to believe but we are very concerned that FOP may have been screwed over by this person as well as the rest of us concerned community.

Salty | Life in General | Comments (2)

Ok ok ok

August 15, 2008 – 2:44 pm

So I have been receiving more traffic on this site since it’s conception, and all of it seems to be focused on the Friends of Pepe drama.

I honestly do not know what to think anymore. Despite whether you think her story is true or not, I believe my point of originally posting about a Cystic in dire need of a lung transplant has taken a dive in the wrong direction. For all I know, her story sounds honest. But also I believed many of my ex-boyfriends when they swore they were not cheating on me! Sooooo….

My point about the original post was to raise awareness about organ donation. I am sorry to those who I shared the link with about her blog who believes it all is a hoax. Believe what you want. But either way, for the hoax, or for if there really is a “Pepe” out there suffering from complications from her double lung transplant, I wish for love, honesty and mental health. Because one or the other is truly a sick person in need of some serious help.

I feel disgusted, sick and deceived, just not sure by whom to blame.

Here are a few thoughts of others who seem to be reputable and have had CF affect their lives:
Pepe/Gina at Confessions Of a CF Husband deleted
Gina/Pepe (Part 2) at Confessions Of a CF Husband deleted
BLOG SCAM????? at Living Life Breathlessly

Thanks to those who are helping me get a full picture of what all is going on with this drama. Because if Gina is a hoax, I have a very close friend who has been duped by the scam, financially. (Not that I am 100% convinced). Time will tell the truth. (you can quote me on that! hehe)

Salty | Life in General | Comments (1)