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  They hurt me because they were scared of some outdated data.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

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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)

Growing up I attended CF camp every summer, two weeks out of the year where I could feel like a “normal” child. Running, playing, doing meds together, sitting in a conga line while someone pounded on your back to free the sticky mucus from your lungs. It was the only time where I felt completely accepted and “normal”.

The discoveries of B. Cepatia bacteria and the ease of Cystics to pass bacteria from one to each other, CF camp ended immediately. This left a very lonely world for me.

I recently met someone who understands what I go through to stay healthy, who understands what it feels like to be lonely because of CF, someone who understands me. This new person in my life makes my odd little world feel “normal” which is a very safe and wonderful feeling that I have not felt since CF camp.

This brings up the worry of “the three feet rule”. To avoid cross-contamination it is suggested all Cystics stay at least 3 feet from another. How much am I willing to chance? Where do I draw the line between happiness and health?

I am not the only one with these fears and frustrations. I found this article in the NY Times today. The Steep Price of Our Forbidden Kiss. Very well written, it is a just a little insight into the world of a Cystic in love.

I spent hours and hours at Home Depot with great excitement of painting up the new condo. Finally a place I can paint any color I want, which leads to the difficult problem of choosing a color! I think it took me a good month to finally decide. How silly am I?!

I was already quite worn down due to the crazy busy summer, so I asked my docs for a round of antibiotic pills. Wasn’t sure if they would help, but at least I could try. I knew it would be another crazy month of packing and moving, so I best be prepared!

Still dealing with high blood sugars. I just can’t figure out this insulin vs. carbohydrate thing.

Happy Valentines Day!

What a crazy world!

All that dating did a number on my health. I got really run down. Going out all the time, staying up late and drinking… ugh! Dinner and drinks was oh so typical of a first meeting. I was so tired. But the humor I got from the dates was definitely worth it!