My Nemisis

I had a little set back a couple weeks ago. Nothing too major, but enough to land me on more antibiotics.

As my disease has progressed I have come to despise stairs. All stairs frustrate me, but none more than the stairs that lead from the first floor to the second story of my home. In the olden days, I used to whip up the stairs with no problem. Now, my ability (or inability) to master the stairs has become an indicator how well my lungs are functioning.

Prior to the 4+ months of IV's that I had in 2010 I needed to take a good 2 minute break to catch my breath after navigating the 13 steps to the second floor of my house. If I was on the phone I had to discontinue my conversation and call the person back after I caught my breath enough to speak again. It was as if I had just finished a 100 meter dash. I would avoid unnecessary trips upstairs. My steps got piled high with things that needed to be taken upstairs, but had to wait until I was going up to stay. Once I was up, forget about asking to me to get something from downstairs...it wasn't happening.

A couple weeks ago I was feeling off. I barely got through my work day, then collapsed in bed each night. My belly felt horrible, my body felt horrible, my lungs felt horrible...I plain and simple felt horrible. The last straw was when I didn't have the energy to walk my son upstairs for a time-out after he misbehaved. While my son was enjoying this version of mommy, I was feeling rough.

A call to my doctor resulted in prescriptions for Flagyl and Levaquin. Dr. Dazzle thinks that this was an exacerbation of the H flu that I cultured in February, but we didn't treat. I took two doses of the Flagyl and experienced the worst peripheral neuropathy I've ever had. It was much worse than the neuropathy I got from the Zyvox I was taking a couple months ago. There goes another drug that I can no longer tolerate. The list of options decreases once again. Unfortunately, I am still experiencing neuropathy at night. This condition can become permanent. It's really annoying, so I hope this isn't the case for me.

The Levaquin, however, has done the trick. My lungs feel great! The stairs have become slightly less daunting. I have to admit that I have had THE conversation with my husband recently. The same conversation my parents had several years back. The conversation most people have when nearing 60 years of age. I had the "I think we should look into buying a ranch-style house soon" conversation. I've been dreaming about whisking freely about the house, punishing my children without a second thought, and feeling like less of a prisoner on whatever floor I happen to be on at any given moment. Easy access is my goal...

Breathe

Four years ago today, Matt Scales, a musician from the UK with CF, died. He wrote an amazing song that was reproduced last year. This time it was sung by 3 amazing singers living with CF themselves. One of the singers, Josh, is a very dear friend of mine.

Click the link below to listen to this beautiful song and read about Matt...

Breathe Song Event

The Story of Us ~ 20 Years in the Making

The year was 1991. It all started at a table in the back of the cafeteria at a very small private high school. The table in the back corner was where I sat, along with all of the other kids who were "rough around the edges". I remember our lunches together, but only vaguely. We bonded over french fries with ranch dressing. Ketchup was too ordinary for us. We threw caution to the wind and dipped our fries in a shared container of ranch dressing. That was our common bond at that time. I would like to say that it was love at first sight or that we knew we would always be together, but I can't and we didn't. M had steady girlfriends all through high school and I had the same boyfriend throughout. We were just two people who enjoyed our fries slathered in sauce.

Fast forward to 1997. I had just finished undergrad and was preparing to enter grad school at Case Western Reserve to pursue my dream of being a health care Social Worker. I worked hard at my studies, but I knew how to have a good time. Sometimes I was guilty of having too good of a time. I was always surrounded by friends and was the healthiest I had ever been in my life. Life was grand. Sorry, Jen, I couldn't resist posting this oldie but goodie... M was a full time punk musician and a part time college student. His band was busy touring the US and Europe. I've heard the stories and it's pretty obvious that a lot of oats were sewn during this time. It was in 1997 that I caught one of his shows when the band made it back to Cleveland. I have to admit that this wasn't my scene. I was never part of the punk culture...no purple hair and safety pin earrings for me. I did have fun at the show, though. Even though the music wasn't up my alley, I bought the bands latest CD, which M autographed for me after the show. It wasn't until I got home that I read what he wrote.... "French Fries with Ranch Dressing" followed by his stage name. Very clever, indeed.

I'd like to now write about how he had me at "french fries", however, it was not to be. I had a different serious boyfriend at the time, while M also had a long-term girlfriend. We were just two people passing in the night.

The year was 1999 when we would meet again. My best friend since 1st grade worked at the bank where M was a police officer. That's right, folks...my man morphed from a punk rocker to a police officer in a matter of a couple years. This time were were both single so we decided to actually go out on a sorta date kinda thing. It was pretty lame. From there we hung out when it was convenient, but we each were dating others along the way. We would go months without seeing one another, then hang out again on a whim.

What mattered at the time was that we were friends and it our relationship was easy. The love grew day by day. It wasn't until 2001 when I was offered a job in Baltimore at Johns Hopkins and I was preparing to move away that we both finally felt that what we had was right. I am not a big fan of the term "soul mates". Honestly, I think finding the one person for you has more to do with timing and circumstances than anything else. I know, this isn't a very romantic notion, but it works for us. Our timing and our circumstances finally allowed a real relationship to blossom.

M surprised me with a beautiful proposal in October of 2001. It was 9 years ago today, April 6th, 2002, that I wed M and became a bonus mom to then two year old, Sarah. The day was beautiful, maybe even perfect! Marriage is not easy. Marriage with a child is difficult. Marriage with three kids, two full time jobs and Cystic Fibrosis is tremendously challenging. I'm not going to lie to you, my esteemed readers, and tell you that we've had a fairy tale life. I won't tell you that we've always been supportive and appreciative of one another. That sometimes, maybe even often, gets lost in the chaos of this thing we call life. However, I will tell you that we are friends and our love has deep roots. Roots that are 20 years in the making. Lately I feel like M has gotten the short end of the stick when it comes to the in sickness and in health part of the vows that he spoke 9 years ago on this day. Yet, he has stepped up to the plate and kept this family functioning when I wasn't able to do my part. I am forever thankful for him for taking on the challenge known as "Stacey". Many others have tried, but failed miserably.

9 Years later...or 20 years in the making...and this is what we have become. An entire family! We even helped create entire other little human beings that didn't exist before. I am blessed beyond measure!

Happy 9 Years, M! I love you for always!