Salty and Sweet

World Diabetes Day

Salty — Fri, 14 Nov 2008 21:51:37 +0000

Go hug all of your diabetes friends today!

Friendly frustration and hope for the future

Salty — Wed, 05 Nov 2008 01:10:05 +0000

So, I have this friend… well, maybe she isn’t exactly a friend, but I grew up with her. We spent many days while we were growing up in the hospital together. Both having CF, sharing the trials, tribulations and frustrations of living with this disease. Having wheelchair races, playing chubby bunnies at 1am until the nurses forced us to go to bed, trying our hardest to use our IV poles as skateboards usually hurting ourselves in the process. My old friend has definitely had a rougher time with her health than me. Ready for a lung transplant, having financial troubles because of astronomical medical bills thanks to a completely screwed up federal disability system, I reached out to help my old friend. I have tried to contact her because I was hoping that maybe through the fund (www.theaspenfund.org) my friends started at the begining of the year, maybe I could help her out. After all that was my dream of the fund.

I have realized that sometimes people aren’t ready to ask for help, even when they really need it… expecially when you are ingrained with the personality that living with cystic fibrosis gives someone. I don’t like to generalize, but it is almost too obvious sometimes that the personality traits of someone who has been fighting daily with CF since they were a toddler are very common to each other. I have noticed that people with CF are usually very independent, stubborn, determined, intelligent, hard headed, with a lust for life, ringleader, troublemaker…. (I hear my co-RCPM-fans laughing at that last one, shut up guys! lol) :p All of these traits make it very hard to ask for help no matter how much you are in need. Wanting not to seem weak, desperate or lazy, it is a super difficult thing to do.

This morning I listened to a rant from a radio DJ about people on welfare. He bitched about how the money he earned belonged to him and only to him and the government should not take any of it to help his fellow Americans. He believed that there are charities out there to help those in need and the government should have no part in helping their needy citicisns. People should work for their money and those who work for their money deserve to keep all of it. As you could guess I wanted to smack the living daylights out of that DJ. I really wanted to call him up and ask him about his thoughts about people on disability who are being screwed out of a life because of a f-ed up governmental system and the lack of people giving to charities to help these people out. Why are some people so selfish??! My friend who I mentioned above has been screwed out of a life, not because of something she did, not because she is lazy, but because she was born with a genetic chronic disease. She worked a little when she was old enough and when she was healthy enough, but it was not much. I actually know a few girls in similar situations (the cystic girls are a little more public with their frustrations). Most of them are currently in their 20’s. Barely bringing in enough from social security to pay medicaid co-pays, not to mention very high grocery bills and forget living on your own, no money for rent or a mortgage after paying those medical bills, like a child they are forced to live off of their families. I thought about my friends in need when this DJ was so busy selfishly whining and the calls supporting him pored in. I figured it would be best for my sanity if I just changed the station, which I did. It is people like this DJ that makes it so difficult to ask for help, and just deal with the suffering.

When I was in need I couldn’t help but notice that the majority of people who donated to my medical bills were people who probably really needed the few bucks for themselves. The people who are rollin in the dough were the ones who turned their backs on me and suggested I contact the Cystic Fibrosis Foundation, which yes I did and yes they were unable to help me (not something they are designed to do). Why is it that the people who have been in need, or are in need, or see they may be in need in the future, are the ones digging in their coin purse? Why are some people so selfish?

I don’t know where I am going with this post. On this election day, I really hope (but not too optimistic about) that the future president will be able to help out those who can not help themselves. I hope for better health care, lower deductibles, better coverage. I hope that those on disability aren’t continued to be treated like the scum of the earth. I hope that this president inspires Americans to love one another, and take care of each other as we should. We are all a part of this world, and in a way we are all family. No matter how you believe we came to live on this earth, I think if you really think about it you can agree. We are all comon humans, in that respect, we are all related, all family. We need to spend less time fighting and disagreeing, and spend more time helping each other out. Maybe I feel this way because I have been in need. Maybe I would feel different if I were born to rich parents or if my little hospital job would pay me a million bucks a year. Maybe I would have a different opinion if I were lucky enough to be born healthy. But I wasn’t, and I am not. I am who I am. I see the need, first hand at times. I see the lack of caring, the lack of love in our society.

I really hope that will change. I hope for a promising future.

*hippie steps off her soap box*

One heck of a month

Salty — Sat, 01 Nov 2008 00:03:03 +0000

October has been crazy. While I was getting settled in at my new job, mother nature threw me for a loop again. Yet another cold landed me back in the hospital. I sat for two weeks with gurgly lungs taking oral Levaquin and nebulized Tobi with no relief. Finally the nurses at work convinced me that it was IV time again. I just hate that.

Here’s a little taste of my reality.

I finally broke my long standing record and have been hospitalized four times this year so far (once was for the sinus surgery which was totally successful, wish I did it a long time ago). Each time I was stuck with a picc line for IV antibiotics (usually a coctail of three drugs) which lasted three weeks each time. Not to mention I am usually sick / down-and-out for the previous two to four weeks ahead of that. Leaving not much well time.

I don’t think that a lot of people understand what I go through when I am sick. Illness leaves for a very hectic schedule with little sleep and no room for socializing, writing a blog, answering emails… you know… all the fun stuff?! ;) A few of my friends had a small realization of what I go through when they came to visit me in the hospital (thank you friends, you mean so much to meee!). After for chatting for a few minutes, we would be interupted by a nurse coming in to hang my IVs (3-4x a day), a CNA coming in to check my vitals, a respiratory therapist coming in to give me nebs and to beat on me (4x a day), someone to take me for an x-ray or some other test, “room service” bringing me more food and coming back for more when they screwed up what I ordered (EVERY single meal). It is not a very restful or peaceful time. I hardly get to do any work (I took my laptop with me in hopes I could get some work done so I wouldn’t have to owe MORE vacation time). Nope, not even time for work! LOL

Now all this gets harder when I take my IVs home with me. In the hospital I don’t have to wake up to hook up to the dose at 6am or I could fall asleep early and not have to worry about unhooking from my meds at 12pm. At home that leaves me with 5 hours of sleep a night (remember I am sick, trying to get better). Between no sleep and the side affects of the drugs I am a miserable mess. Not to mention I usually need to go back to work because I am always in debt with sick and “vacation” time.

This is far from a tiny portion of how crazy my life has been like over the past month…

Ok ok ok… enough complaining…

As for the good things this month? I was contacted by a writer at Diabetes Forecast magazine (put out by the American Diabetes Association). They are doing an article in November (I believe) on diabetes success stories and I will be one of the folks featured in the article!!! YEAAAA!!! Just after I got out of the hospital, PICC line in place, I got pretty pretty pictures taken of me for the article. I have no idea how the article is going to turn out, hopefully better than the TV news story I did about 10 years ago, but I know at least the photo turned out good. Unfortunately it didn’t show the true me, the spunky me, but it was a good commercial style photo so I am not complaining. :) I’m planning on posting the pic after I watermark it… which may be a while. hehe

Now I am working closer with CF, and also closer mile-wise to my clinic, I have become a happy little guinea pig once again for some CF research studies. Two studies I did in the hospital and now I have three longer term studies lined up to begin as soon as my month of Tobi is over. I am very excited about all the new research coming out for CF. The one I am most excited about I blogged briefly about in my previous post.

My blood sugar is still a bit crazy since moving into my mom’s house, but that will be under control soon. Although my condo still has not sold, I found an apartment that I will be moving into in November. I don’t know how I am going to swing a mortgage payment and rent, but since my health is in the balance, I pretty much have no choice. It has been too stressful, a bit too much for my little body to handle. Hopefully I can get everything back into control (including my sanity, haha when did I ever have that!) after this next move.

Hmmmm… today is my second favorite holiday! :D Happy halloween everyone!!! For work, all the girls dressed up as cowgirls (including your’s truely) so we could be the pulmonary posse. Oh my how cute we are!! I even had the brilliant idea this morning as I was tangled in my oxygen tubing, to hook some to my belt as a lasso. Such a great idea!!

Tonight, if I go out, I have a sexy little referee costume. Wish I could bring Brodie with me. The cute little guy has a Bronco’s jersey. Totally adorable!! Hoping I can get some pictures before I get too anoyed with my costume and end up in jeans like I do every year.

I’m trying not to eat too much junk today, but it is oh so hard! Here’s a pic of one of the goodies that was passed around earlier. I think it is supposed to be a finger cookie. Haha!

Hope you all had a great month!!!

One of my heros..

Salty — Sat, 25 Oct 2008 16:32:05 +0000

From the national cystic fibrosis conference going on in Florida this weekend. Frank Accurso is one of the ringleading researchers of Cystic Fibrosis (also my former childhood doctor and current boss). In the video below, as principle investigator, he speaks of an amazing new study drug, Vertex VX-770. This is not a cure, but it does treat the basic defect, not just the symptoms. Probably the closest thing I will see to a cure in my lifetime.

Quick and dirty run down of what this treatment means:

CF affects how water and chloride moves in and out of the cells. In a non-cf body, when working properly the cells keep everything (mostly mucus, digestive juices and such) lubricated and flowing. With CF, chloride and water doesn’t flow as it should and causes mucus to become very thick and sticky which builds up in the organs, causes infections and destruction. This drug will treat CF at a level that forces the water and chloride to move in a more “normal” way. Which is a step ahead of the thick sticky mucus, stopping the domino effect of destruction from happening.

What that means to a Cystic? If this drug works as planned, a person with CF will take a pill (once a day? twice a day? not sure), this pill will force their cells to work properly, to what degree is still being studied. But even the slightest improvement resulting in thinner mucus would be a savior to a cystic. Their bodies would work in a more normal fashion. Unfortunatly any distruction already done to the lungs, pancreas, liver, …etc, would not be reversed. But frankly, I would take that compromise.

CF is caused by a genetic mutation. There are several mutations that cause CF. VX-770 only targets one specific mutation, which few people with CF have. (Personally, I do not have that mutation) But this is such exciting news. The preliminary data says it is successful. Which means a few more years of studying the drug before it can go to market. In the mean time maybe they will find a way to treat other mutations using the same technology.

My Blackberry

Salty — Sun, 14 Sep 2008 13:35:23 +0000

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!

The evil high fructose corn syrup

Salty — Sat, 13 Sep 2008 13:23:25 +0000

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.

My insulin pump

Salty — Fri, 12 Sep 2008 13:02:13 +0000

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).

Gaining control

Salty — Thu, 11 Sep 2008 12:41:37 +0000

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!

Checking in

Salty — Wed, 10 Sep 2008 22:41:36 +0000

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!

“Normal” blood glucose levels

Salty — Mon, 25 Aug 2008 21:29:52 +0000

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%