Hi y’all!

I survived the swine flu. I honestly have no idea how I did though. It was horrendous. I was so weak, I couldn’t even lift a bottle of Poweraide Zero to my lips and needed a straw. Since then it has been hard to get back on my feet again.  I’ve had two rounds of IV antibiotics with about 3 or 4 weeks in between. I’ve never needed IVs so close together before. If any of you cfers are debating on getting the shot, my advice is to GO GET IT!  :)  Just make sure it’s the shot and not the nose spray.

Slowly I will be getting back in the swing of things, more blog posts, replying to email, updating the format of the site like I promised long ago.

More to come!!!

I hope all of you are doing well… I’ll be getting back to all your emails very soon.

Take care and use Purell!!!

Stay tuned… more info and stuff coming soon!

That coupled with a few “know it alls” who make me feel like an idiot (even when they are the one who is wrong), I really haven’t felt really like putting my vulnerable self out there for the public to scrutinize.

ok ok, I’ll just shut up and get back to writing.

Holy smoke folks!  I never thought I would have this conversation with my docs ever.  Partially because I was reluctant to ask, because I didn’t want to get my hopes up, until I found that special someone to share my life with (yea, I am giving up on that for the time being, until time wears away some more horrible memories).  But my doc said some of the most wonderful things to me.  If I am able to get my lung function just a little bit better, which is very possible and should be easy to do, and keep my diabetes under control, my doc believes I could live a very long and healthy life, which may even include… having a FAMILY!  Oh my! She said the “f” word!  I never really considered this to be an option for me.  So hearing it makes my mind boggle!

I don’t know… maybe doc has been reading my blog and found out that I have been down in the dumps and wanted to lift my spirits about my future… who knows. (by the way, I don’t mind if you read my stuff docs and nurses.. if you are reading this)    But still.  A FAMILY is something that I had never seriously dreamed of.  Much like the people I have dated, I always invisioned myself to have the “expired” stamp on my forehead.  These people have done hell to part of my self-esteem, which you could probably read into in some of my recent posts.  Making me feel like I am less worthy than someone without my genetic mutations.  I look back to see my past wasted with tears caused by people who looked up CF on the web and deemed me lesser than thou.  They hurt me because they were scared of some outdated data.  They were scared I may die (well DUH!).  It is horrible.  And despite this happy news my doctor spoke to me, the tears I have spilled over the years over what others have told me… it is very sad to realize that this cycle will go on, people believing the internet over my word, or even my doctor’s word.  I cry more tears knowing that even though I have been given a blessing of sorts, I may not ever be able to have it just becuase of this damn internet.

What brings us together can also push us apart.

But she still said the “f” word! 

This past year has been super hard health wise, where I have passed a few unhappy milestones and set some disappointing records for myself.  But overall I have had no decline since this year started.  But I feel now more than ever my life slipping away, I know most of it is just mental.  Not helping are the loved ones in my life who some are not realizing that I have been having a tough time, most are living in denial.  Then there are others, mostly friends or people I have dated, who don’t have a clue what I go through and then turn their backs on me because I have had to cancel some plans because I simply did not have the energy to go out of the house or because I caught yet another one of their colds.  This year has definitely shown me what makes a true friend.  I am coming to terms that CF is a very lonely disease.

From those who I dated, it hits harder than ever, the words still echoing in my head, “I looked up CF on the internet….”  now I stop them in their tracks.  I know what comes next… blah blah blah… you are going to die… blah blah… I am just not strong enough to deal… blah blah… It scares me… blah blah blah.  HELLO?! Have you come to terms with YOUR OWN morbidity?!  They make me feel like a charity case.  Wasting their time until Ms. Perfect comes strolling along.  I have heard this story from almost every single person I have dated.  I used to try to plead my case, try to get them to understand that they are mortal too, that they have no idea what their own future could bring.  Treatments are coming out by the bucket-load to help prolong my life, so goodness knows what my future will hold.  But it always falls on deaf ears, so I no longer try.

Thanks to those who have attempted to point me to the social internet sites where others with CF can bitch, moan and complain about their ailments, I appreciate your attempt… but seriously.  Knowing that others are going through the same thing really doesn’t help that much.  I want what most “normal” (as if there is such a thing) 32 year old women want.  So far, there is nothing stopping me but kismet, which I am promptly growing tired of the lack there of.  I see my friends getting married, having babies, getting divorces,  getting re-married.  Am I ever going to be able to experience those things?…  I don’t understand why I am so… second-class? disposable? undesirable?

No wonder why people with chronic illnesses end up with depression.  Not as if dealing with the illness is hard enough, but having to deal with people who are so uncaring… or maybe they are just out of touch with reality.

Physically, I feel alright, my health is stable (even though I had some rough bumps in the road), but I constantly have people are pulling me down emotionally.  I do have bad health days, but I think it is because of my emotions more often now than before.  Being sad makes me feel sicker.  Taking care of myself is taking up more of my time, but it is only because I have more of a desire to stay healthy, live longer, it is my last hope of a somewhat “normal” life.  Even if I am the only one hoping.

For the past several months I have had a slight obsession with the show You Are What You Eat on the BBC.  On one episode the host, Gillian, describes how intestinal gas is formed in the average digestive system.  What she said (in my confusing words) is that if you eat your slow digesting proteins before your fast digesting carbs, the proteins act kind of like a stopper and the carbs sit, digested, rotting, fermenting, and producing gas.  This is how “normal” gas, (dare I say FART! hehe!), is made.  I have no idea if her theory is valid, but it kind of makes sense to me.

Now with CF, specifically in pancreatic insufficient folks like yours truly, the digestive tract is a bit slow thanks to the lack of water between the poo and the walls of the intestines (epithelial cells, CFTR malfunction, I’ll spare you the details for another post), this could cause a longer digestive process causing the fermenting fast acting foods to ferment further and make even more rotten stinky gas.  (oh so pretty, I feel pretty!).

No idea if I am on the right track here or not.

So I will share some things that I have changed recently in my life that has helped me with my gas issues… (except for when I cheat, then all bets are off):

• Drinking lots of water (I am never really good at that and would much rather drink coffee)

• Not eating red meat (no idea how this is related, but there seems to be a connection for me and my body and gas)
• Eating more fruits and veggies

• Taking Miralax when I am starting to feel a bit backed up and bloated.

Anyone else want to take a stab at the causes of gas?  Do you have some home remidies to prevent gas?  Go ahead, it is a funny topic so be as silly as you want!

I send warm hugs to all of you!!!  Hope you are staying warm this winter (it is FREEEEEZING here!).

Take care!
~salty

Dealing with Diabetes and the copious amounts of food that the holidays bring is a very difficult thing to balance.  I thought I would share a few tips and tricks that helped me maintain control while also indulging in the feast.

First I made sure to go into the day with a good blood sugar level.  I have been generally running a little on the high side (must have an infection brewing again, or maybe it is stress?), so in the morning with my coffee I did a correction to bring myself into the 80-90 range post coffee.  Going into the day with a good level is key to keeping everything else in control.

Second, I planned ahead.  Most thanksgiving dinners include the same sorts of items;  mashed potatoes, sweet potatoes, dressing, gravy, cranberry relish, pumpkin pie….. loads and loads of carbs.  What I did ahead of time was looked up the carb counts and made a mental note.  If I indulged in seconds (thirds, fourths, hehe!) I could do so while balancing the amount of insulin I took.  I tried to choose wisely and had a small amount of the sweet potatoes, mashed potatoes, cranberry sauce, and other high carb items, and loaded up with turkey, low carb veggies, and heck, is there anything else low carb?? Not much! But that trick seemed to work.  As long as I got a taste of the good stuff my tummy was happy. I did not need to overdo it.  Now for those poor diabetics on the old style of x-amount of insulin at x-time, with x-amount of carbs, I have no idea how you deal with the holidays. That has to be quite frustrating, I feel for you.  ((hugs!))

My family had “dinner” fairly early in the day, so I was not in the mood for eating a lot. (who has dinner at noon!) I think that helped me keep my numbers from going toooo high.  I will admit, it was a “special” day and I forgave myself if I was not the “ideal” diabetic patient (hahaha! like I ever am! details to come in future posts).

Third, I wore my continuous glucose monitor.  I try not to rely on it too much, and I really did not have to because of my careful carb counting plan.  It was a bit of relief to have it though, just in case.  I never ever want to be upwards of 300, which DOES happen, but I just hate the feeling and the repercussions of it.  Plus, in case I get over zealous with the insulin, I don’t want to drop too low either.

Turns out it was a lucky day for me.  Somehow I was able to guess my carbs fairly close to what I ate, and only had to look up the pumpkin pie on CalorieKing.com via my BlackBerry (two things I am very thankful for).  Mom gives me heck for always being on my BB.  Little does she realize I am not screwing around on it, but usually looking up carb counts (insert rollyeyes icon here).  After we finished dinner/dessert I was still famished.  Don’t know what has been going on recently but I just can’t quench my hunger.  I’ve been feeling like a hippo, the pink one, in that hungry hungry hippo game I played as a kid (which mom hated because it made too much noise, lol).  Anyway, I tried my hardest to resist snacking for three hours.  At two hours, I tested and was high (but less than 300) so I waited because I still had a lot of insulin still kicking in my system.  At the three hour mark I was still a bit high so I made a correction (my pump figured out how much insulin I still had “active” in my system, SOOOO thankful for my insulin pump) and had a snack of two roast beef sandwiches (yes, we did not have enough food for fourths).  (thankful for more food!!)

I was quite nervous going into the day knowing it was going to be a tough one diabetes-wise.  But with a little planning and a little luck everything turned out ok.

I have realized that sometimes people aren’t ready to ask for help, even when they really need it… especially 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 citizens.  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*