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  They hurt me because they were scared of some outdated data.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

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 cocktail 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 interrupted 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!   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!!!

Let’s see…. where to start…. update… What I have been doing: 3 IV antibiotics 3x/day (takes about 1.5-2 hrs each time), occasional saline fluids in the evenings (takes 3-4 hrs) to rehydrate and physical chest therapy twice a day (should be doing it 4x, but since I have to work there is no time).

I now OWE my work sick time and am not looking forward to owing them even more when I get my sinus surgery in a few months. This just doesn’t make me comfortable.

Wednesday was my two week checkup. Breathing tests went from 54% to 57%, really not much improvement for the extent of my care over the past few weeks. So now I will be doing IVs for one more week. Having horrible side affects (a different drug cocktail than I am use to).

Added Prednisone (steroid) today to calm down inflammation. (lungs are really tight and wheezy). I hope this works and maybe it will help me get rid of some of the plugs on my right side, giving me back some more of my function, but this is only a guess. Prednisone is going to make my blood sugars go insane, which may cause MORE dehydration.

My current dehydration has caused another blocked intestine (oh such a lovely pain), which luckily I caught early, so things will be moving a little better with yet, more drugs.

I also have thrush in my mouth which is caused from a combo of diabetes, infection and antibiotics. Soooo… one more pill to take! ahaha. I never had this before and had no idea what was going on. It felt, and looked like, like I drank something that burnt my entire mouth inside. Had trouble eating & drinking anything. but all is almost better now.

The drugs are making me nauseous. My blood pressure has been crazy low 80/54 the other day, making me really woozy. I HAVE to have sinus surgery in the next month or two. My sinuses are still really messed up (moderate-severe sinusitis and severely deviated septum). I saw my CT-scan and it does look pretty wicked! My sinuses are really stuffy and causing my ear to fill with fluid. Causing more off balance stuff. I swear! I am a danger to myself! haha (one thing, I haven’t yet lost my sense of humor!)

Oh, one good thing, my blood oxygen levels are going up. I no longer need oxygen to exercise. Doc is ordering a night time test to see how I do on room air while sleeping, so maybe I won’t have to be on o2 at night anymore. (although it helps me sleep sooooo much better!)

I should have just made a bullet pointed list! LOL Sorry if this is TMI, but I have only talked to doctors and nurses (and my parents) for the past few weeks… they get all the gory details!

darn…. that’s a lot! Work has been okay, although I wish I took off the past week, then I probably wouldn’t have to do this third week of IVs. But I am super in the hole with vacation time. They say that it is not a problem…. but what that means, I am scared to find out since they can’t have my first born. the gas station already took that from me.

I am feeling super overwhelmed. I sit here with not enough time in the day to do all I need to do to take care of myself. I am no longer afraid to ask my friends and family for help, but I am having a hard time figuring out what they CAN help with. Any suggestions out there?

With all that is going on, I am at least starting to feel better FINALLY. Getting my oxygen levels up has helped tremendously. Hope all is well in your neck of the woods!

I believe the answer is because I came to terms with my own mortality a very long time ago. It has given me a better understanding of how precious life is. Also how extremely important love, caring and sharing is. Every day I wake up still breathing is truly a blessing. According to the facts and figures when I was born, I was not supposed to live this long. But here I am! I am strong because I understand that there isn’t a single “perfect” person here on earth. No matter how hard everyone strives, no one can be perfect. We all have flaws. We all have challenges.

The lack of love, understanding and caring in this world is what frustrates me more than my own health challenges. Call me an old school hippie if you want. Kids are no longer to give each other hugs in school. Adults continuously argue about petty issues. Some strive so hard to “keep up with the Joneses” rather than lend a neighbor a helping hand. I am just as guilty as the next person, so who am I to judge, but I am trying to change my ways. I want to make the most of my life and leave a positive footprint after I leave. This I see is my biggest challenge.

Dealing with two invisible diseases is something that not many people can even wrap their brain around. I feel very lucky that through my blog I have met some very amazing people who are dealing with the frustrations that I am. This blog has a strange way of comforting me. I am not the only one with these issues. We have been able to share thoughts, feelings, and maybe even improved our health care by sharing treatment ideas. Hopefully this is a little piece of positivity, and change, I am sharing with the world.

Now that I have been diagnosed with diabetes, I still am the same person I was with CF, but now I am confused and overwhelmed. I do not understand this disease. I do now know how to deal with it physically or emotionally. Is this a blessing in disguise like CF, or is it a curse?

Right now, I only have a few designs, most are printed on the front and back, so check out both sides of the items. I am planning on adding more designs as I have time to create them. If you have any snazzy suggestions or ideas, let me know and I will see what I can come up with!

You can find the link over on the right, under my picture. “S&S Store”, or click here!

I arrived at work with my second breakfast in hand. Only to be greeted by one of the office smokers at the front door. Why must they stand within 10 feet of the door? One day in my shoes and they would never touch a cigarette ever again. Just shook my head and said ‘oh well’ as I scurried inside. As I opened the door a stench hit me like a wall. I have no idea what this smell is, as my nose thinks that smelling is a part time job. What ever it is, it isn’t pretty. Immediately I feel my lungs filling up, first with the stench and then with the mucus trying to get the unidentified airborne particles out of my fragile lungs. My eyes start to well up with tears as I know that today has taken a turn for the worst.

But I must push on and live as though I am half way normal. I complain to a few people about the smell as I choke and sputter. Thinking they may help ease my fight to breathe. Find a fan, open a window. But they turn a blind eye since their strong lungs don’t even notice what is going on. A few asked if I had a cold, as they were concerned if I was contagious.

Unfortunately, this happens way to often to me. Whether it is the stench of second-hand smoke, a person’s slight overuse of perfume or cologne, or some random unknown cloud of stink. Little things can set my lungs into mucus overdrive causing the rest of my body to have a bad day.

Don’t assume that because I look well that I feel well. Looks can be
very deceiving. Many days I look great but feel terrible.

Don’t say, “I know how you feel.” No one knows how anyone else feels.
We all have varying thresholds of pain, and pain cannot be measured.

Don’t tell me about your Aunt with so and so disease or ailment and how
she managed in spite of it. I am doing the best I can.

‘Don’t tell me, “It could be worse.” I don’t need to be reminded.

Don’t decide what I am capable of doing. Allow me to make those
decisions. There may be times I ‘m wrong, but I’ll know soon enough.

Don’t be upset that you cannot ease my problems. It won’t do any good
for both of us to be miserable.

Don’t ask me how I feel unless you really want to know. You may hear a
lot more than you are prepared to listen to.

Don’t assume because I did a certain activity yesterday that I can do
it today.

Don’t tell me about the latest fad cure. If there is a legitimate
treatment, my doctor will let me know.

Do realize that I am angry and frustrated with the disease, not with
you.

Do let me know that you are available to help me when I ask.

Do offer me lots of encouragement.

Do understand why I cancel plans at the last minute. I never know from
one day to the next how I will feel.

Do continue to invite me to activities. Just because I am not able to
bike along with the gang does not mean that I can’t meet you for the picnic
at the end of the trail. Please let me decide. Thank you.