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  They hurt me because they were scared of some outdated data.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.

Personally, I am waiting with baited breath for this treatment to hit the market.  Inhaled Aztreonam, AZLI, was expected to be available this past September.  My doc already had plans to put me on it. Due to some changes of FDA board members, this drug is now having to be restudied which means it probably will not hit the market for another two years… a wait too long for some of us.  We are asking for your help in supporting the reconsideration of the application already submitted to the FDA in approving this drug.

I have not yet used AZLI… yet.  But Aztreonam is one of the most effective IV antibiotics I use. Having this drug available in inhaled form could add years to my life.  I have cultured Pseudomonas Aeruginosa for many years (and sometimes many straigns of it).  Having this drug gives me one more weapon against this very harmful bug.

Pseudomonas not only causes horrid infections, it also causes severe irreversible lung damage.  Aztreonam is used as common practice in fighting PA, but right now it is only available via IV.  Having this drug applied directly to the problem, via inhalation, would only make the fight against PA easier and more successful.

Since Aztreonam is only currently available via IV, I only receive it when I am really sick. This inhaled version would be dosed three times a day, 28 days on, 28 days off.  Which basically means I would be fighting my PA with Aztreonam every other month rather than the once to four times per year when I do IVs.  Couple that with the Tobi, inhaled Tobramycin, which I would do on the off months and I would be continuously fighting this evil PA.  I bet that my frequency of hospitalizations would go down given the extra boost I would get from the drug.  Oh my! What life would be like?!!!

Please consider writing the FDA in support of this new drug.
Read additional information about AZLI and the importance of the drug for treating CF.

Cystic Fibrosis

Dear Advocate, Have you or someone you know had a personal experience using Aztreonam Lysine for Inhalation (AZLI)? AZLI is a promising new inhaled antibiotic treatment that appears to help combat the pulmonary symptoms of cystic fibrosis. By sharing your experience using AZLI, you can help the Foundation as it works with the Food and Drug Administration (FDA) to move this new therapy forward. To help, simply: Read our sample letter Write about what AZLI has done for you E-mail your letter to publicpolicy@cff.org by November 28, 2008. Read additional information about AZLI and the importance of the drug for treating CF. Thank you for helping us work with the FDA to advance vital new treatments for cystic fibrosis. Cystic Fibrosis Foundation 6931 Arlington Road Bethesda, MD 20814 (800) FIGHT CF E-mail: publicpolicy@cff.org Web: www.cff.org/GetInvolved/Advocate P.S. Please forward this email to anyone who might be interested in sharing their story about using ALZI.

————————- The CF Foundation is a donor-supported, nonprofit organization committed to controlling and curing cystic fibrosis, a life-threatening genetic disease, and to improving the quality of life for those with CF. To learn more about the Foundation, visit www.cff.org. and subscribe to receive information by e-mail.

________________________________________________________

P.S.  Thank you.  ~salty.

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*

Aside from seeing a lot of my amazing friends (and making a few new ones):), the highlight of the even is when Angie Stevens and Susan Phelan put on the best show ever! Susan showing up was a complete surprise to me. I’ll give you the details soon! (I hope I can figure out how to upload the video I took, it ROCKS!) Sales of merchandise was donated to the fund, which was…. I am speechless. Thank you Angie and Susan sooo much. We could not have had such a successful event without you!

Due to circumstances, we did not obtain a proper liquor license ahead of the event. The donated beer from Flying Dog Ales and the liquor from Peach Tree Distillers was taken to Cap City Tavern and served to our guests when they turned in the cards we had donated/printed by Yellow Dog Printing (they looked awesome!!). Cap City Tavern saved the day! The beer was yummy and the liquor was great too. I’m going to post a review soon. Just wish I took some pictures of the food, it was beyond tasty!

I want to send a special thank you to everyone who pitched in to help organize this event. I appreciate all the time, dedication and effort you put into making this a successful event. I can not thank you enough!

If anyone reading this attended the event and took pictures, could you please send some my way? I tried to take a few with my camera, but I have been so shaky lately only a couple turned out. Thanks!!!

Below is a list of sponsors. Please support them!

Angie Stevens and Susan Phelan (of Angie Stevens and the Beautiful Wreck) – Beautiful people, beautiful music. Just straight up awesome.

Flying Dog Brewery – Tasty beer!
Peach Tree Distillers – Yummy booze!
Yellow Dog Printing – Great printing job on our cards and posters. Go there if you need some printing done!
Cap City Tavern – Saved the day! AWESOME food. Good booze and really fun people.

Such a sweetheart! I snapped a few photos with my phone. We had a great time. Thanks for the biggest hug ever Angie! Check out her website at www.angiestevens.com. A totally awesome performer, if she is ever in a town near you, check her out. Her shows are sooo much fun!

This little girl peaking through the fence reminds me of how I wanted to grow up and be a singer. Now I can’t carry a tune! hehe

I love you Angie!!!

I am a bit worried since my lung bugs are acting up again and I just saw her on Mother’s day. I hope I am not giving my infections to her. Mom had a really bad lung infection last year resulting in a partially collapsed lung, and cultured the same evil bacteria that I always do. I am really worried that I may have to stay away from mom because I am bad for her health.

Please send positive healthy vibes for momma. Last thing she needed was an infection on top of recovering from surgery.

One good thing is that she hasn’t lost her spunk. When she was told she had a lung infection she told the doc that she has a daughter with cystic fibrosis. The doc said immediately that “oh that’s a childhood disease”… ummm… excuse me doc! How could a doc be so insensitive as to say something like that to a parent! Mom threw a fit about the doc’s rude comment, almost throwing the doc the bird. (wish I could have been a fly on that wall!)

I hope tomorrow will bring a better, more knowledgeable doctor.

(anyone know if carriers of the DF508 mutation have a lot of symptoms of CF?)

Happy May! Congress has officially named MAY Cystic Fibrosis Awareness month. Yippee!!
So this month maybe you can do one of more of these things:

* Send out a mass email sending people to this site to show them what life is like for someone with Cystic Fibrosis.

* Participate in the national Great Strides walks happening in your area (www.cff.org/greatstrides for more info). [Note: The Cystic Fibrosis Foundation (CFF) is a GREAT source of large scale funding for research and education of Cystic Fibrosis]

* Buy a Salty and Sweet t-shirt, wear it every day this month with pride and if someone asks about it tell them about CF… you can wash it if you’d like…

* Tell someone with CF that you love them!!

[youtube=http://www.youtube.com/watch?v=WChliDKHiEI&hl=en]

Ok, now that I have aired my thoughts… I am feeling much better!

Stay tuned for your regularly scheduled programming…. (or how ever that goes)

On another front, I am dealing with a lot of other personal relationship issues, it is sad. Which makes it a little hard to put my life out there in writing right now.