Friday, May 26, 2017

CF Awareness Month- In Memorium


This has to be the hardest topic of them all. I have lost some cysters over the years and it so heartbreaking to lose someone to your same disease and at such a young age. I realized recently that at 33 I have outlived most of my closest cysters. At 33!! I am going to speak for all 33 year olds and say we are way too young to be outliving our friends!

When I started blogging I met a friend through my blog comments. She was about my age, worked in a school, and was married and had lung function just a little higher than mine. She found my blog because she wanted to start a family. We hit it off and became Facebook friends and stayed in touch via e-mail.

What happened over the next few years is something I will never understand and I will never live without feeling some guilt as to how life treated us so differently. I had a baby, she was having trouble conceiving. After a few years of trying she decided to try for surrogacy for multiple reasons. I was ecstatic for her because she would finally fulfill her dreams of motherhood.

Then by some weird twist of fate we both started to decline. We both started losing lung function and having problems getting a grip on CF. We slipped down together, and found comfort in clinging to hope with one another. We found comfort in having a friend that could understand how this horrendous disease can pull the carpet out from under you and you can fall at such a dizzying speed that nothing seems to ever make sense.

And then we watched our numbers fall to the 40s, 30s, 20s, both desperately trying anything to get our numbers back, both of us working our asses off to do anything and everything our doctors asked and then more. We made a bet at who would get back to 50% again and we teased one another about who would win. We talked about the upcoming medications in the pipeline and how close Orkambi was. We told one another to hang on until Orkambi become available. And then we both were going to the hospital again, but my room wasn't ready and I kept getting delayed, for days. Finally the phone rang to say a room was ready and she was the first person I told. But she didn't respond.

She would never respond again.

I still don't know why I was given a baby and she was not. She deserved one just as much as I did.

I still don't know why either of us had to decline so rapidly.

I still don't why I was given a second chance and she did not. She deserved it just as much as I did.

I still don't know why I was able to try Orkambi and she was gone before ever getting a chance.

I still cry when I think about her and how things ended up.

I still call on her for strength when my CF gets too hard because I know wherever she is, she understands.

Saturday, May 20, 2017

CF Awareness Blog- Free Day

 
 
For free topic day I am going to give an update on my health lately. This winter has been so rough on my poor body! It started at Christmas when I got a bladder infection and soon after contracted noro-virus. Prior to that I was doing really well and staying very healthy. It seems that when I get hit by something really bad (oh you know throwing up non-stop) my immune system takes a huge hit and seems to disappear. I also lost weight because I couldn't keep food down for so many days and I think the weight loss really hit my immune system as well.
 
 
So the past several months have consisted of one cold after another, bleeding into one another so that I can hardly remember what it feels like to feel well! I was sick the whole first week of May and now I am sick again! That's less than two weeks! And we all know a CFer doesn't just get a cold and bounce back to 100% so I feel like I haven't been 100% in months now. Thankfully, my lung function has been holding steady and I don't even have words for how grateful I am for my lung stability. This winter could have been so much worse if my lungs weren't holding strong.
 
 
I am so very sick and tired of being sick and tired. I thought by May I would be over this horrific cycle of sickness, but it seems the viruses are still circulating in full force. I just want ONE month of no cold, no cough, and actually having a voice (I lose my voice every time I get a cold) and I just want to have energy again! Hurry up, summer!! With the end of the school year wrapping up (which means I will be at preschool most days now until the end of the year) and an upcoming wedding and a visit to a best friend I just can't afford to be sick anymore. I also wonder if all these activities will make me sick AGAIN! Ugh, despite taking all my vitamins and supplements and finally eating fresh fruit (boysenberries, blueberries and strawberries) from my garden I just can't get back in my healthy groove!

Friday, May 19, 2017

CF Awareness Month - Smoking


I am not sure what to say about this topic. I feel like you have a right to choose what you do with your life. We all make life choices that aren't always wise. In high school my two best friends and I would purchase a pint of Ben and Jerry's ice cream each and eat the entire thing in one sitting. Was that a smart healthy choice? Nope. Did it have long term consequences? Thankfully, no. Am I going to judge your lifestyle habits even if I personally don't agree with them? No.

What I do get mad about is when people's lifestyle choices directly harm others. Like don't smoke with children around. I also get pissed when people don't obey the "no smoking within 20 feet of a building" and smoke wherever they want. In that case, your lifestyle choice is harming other people's lives and I am not cool with that.

The other part that gets a bit murky is when we talk about transplant. I don't think anyone deserves to be sick enough to know what needing a transplant feels like. And for people who do get that sick, I feel they all deserve a set of healthy lungs to run and jump and be human again. It does get a bit weird when people who were born sick (whether CF, pulmonary hypertension, or any other lung disease) has to complete with people that are sick due to past poor life style choices for new lungs. The biased part of me feels like those of us that are simply "unlucky" should have priority, but that isn't the way life works.

Thursday, May 18, 2017

CF Awareness Blog- Hygiene

I definitely don't fall into the OCD category. I am not really a germaphobe and I do lots of things other people with CF avoid due to concerns about bacteria: swim in rivers, lakes, sit in hot tubs, garden (I do wear a mask though), and volunteer at my daughter's preschool. I can't spend my life wrapped in a bubble because we all end up the same way... dead. I want to enjoy my time here.

I do keep a bottle of hand sanitizer in my purse and use it pretty regularly during cold/flu season so that might be my CF-OCD showing. I also tell people not to hang out with me when they are sick and move away from people who are clearly sick and coughing at the grocery store or library. I guess those might be weird behaviors for average people, but for the most part I don't think I am overly obsessed with avoiding germs.

Wednesday, May 17, 2017

CF Awareness Month Blog - Savior

I am interpreting this as a person who has been life saving rather than in a religious view (not sure what the original person meant by this so I am opening it up to my own interpretation).

Most of my entire life I kept CF a huge secret from everyone I knew. I kept it such a huge secret that I didn't even tell a few roommates. How crazy is that? I would do my treatments when they were in class or before they woke up. I seriously look back and can't figure out how I managed to pull that off! When I did have to tell roommates or coworkers, usually because I needed a PICC, I gave as few details as possible. CF was always my dirty little secret.

When I met my now husband I wanted him to know what he was getting into so I was extremely open about my CF. He was really the first person I let know all of me and my disease. As we grew closer he became the first person that took some of the burden I had from CF and helped me carry that burden. He not only was supportive in my health, was willing to do jobs very few people would (like clean my PICC site daily when I had such a nasty reaction I had hard even looking at it), he was also a huge emotional support.

The emotional and physical toll CF has on a person, especially as they decline, can be enormous and without the support of my husband I am not sure how I would get through. I am so grateful for his love and support!