Think, Think, Think

My mind has been working on overtime lately, think a lot about what it means to have CF. I have lived the last 14 years not really understanding what CF is really about. I always just thought, well I have this disease, but its mild and it really doesn't affect me with "classic" symptoms. I'm healthy. I always just assumed this would be the extent of my disease...antibiotics a few times a year, keeping up with exercise to stay healthy, four clinic visits a year just to stay on top of my care. I didn't really think about the disease progressing. I just lived thinking that the disease would always be mild, even as I grew old.

Then my sinus problems came along. Everything changed. I discovered CF "catching up with me." I realized I needed to understand what was going on and why and what treatment options were available. That is when I discovered the CF community. Blogs, forum, facebook, a whole world out there dedicated to people with CF. Places I could ask questions, find answers, and even make friends. In the process, I also discovered what CF is all about. How horrible this disease really is. It made me start thinking about the possibility of my own disease progressing.

I realized that thinking about this constantly is not productive. I called my clinic's social worker. I'll just call her Mrs. Wonderful. I have never called the social worker before, so this was new territory for me. Mrs. Wonderful is well, wonderful. She was welcoming to my call. She had great advice. She told me I need to change CF into something positive. Also, she thought I could benefit from the book Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn. She also told me about classes my health care provider offers that help with various ailments. We found "Mind-Body Medicine for Stress" to start. I have not bought the book yet, but I have signed up for the class.

Since talking to Mrs. Wonderful, I am feeling so much better. Just having a plan in place has been help enough. Mrs. Wonderful even encouraged me to call her on a regular basis, even if I am doing well. Maybe just to even say hi. I really appreciated her saying this to me. I like having reassurance. It is also a good reminder to take care of my emotional health too.

Wordless Wednesday

Cross Contamination

One aspect on CF I have not had to worry about before is cross contamination of bugs with other CFers. I never knew anyone else with CF before, so I didn't need to worry about coming in contact with CFers. That has changed now that I have been more involved with the community. Going to fundraisers and CF related events, it is something I now need to think about. Meeting people in the CF community is hard when you really can't meet face to face. Or have to worry about it.

Being involved with some local fundraisers, I have in turn met local CFers. While we all carry a common bond, it is hard knowing that we have to be very careful when meeting face-to-face. To the point where you have to wonder if it is worth the risks?

One person I have found to have a lot in common with is currently staying with her mom, locally here in Santa Rosa. We have a ton in common and it would be so great to spend some time with her. But then there is this issue. To make it easier, we decided to meet at the infusion center last Monday while she was receiving her first dose of IV antibiotics. It was perfect. We each wore a mask and talked for nearly two hours, mostly about CF. What a better place to wear a mask than the hospital? No strange looks or needed to explain details to anyone. It was great.

Yet, it is still hard. Knowing all these great people, but not being able to hang out together...well it sucks. I know I can't invite her over to the house for hang out. We are trying to come up with safe places to meet. We are getting pedicures next Friday and looking forward to it.

Wordless Wednesday

Blog Award

I feel very honored that my fellow CFer and blogger, Gem, gave me my very first blogging award.

Now I get to pass on the award to 10 blogs that I love. Here they are (in alphabetical order):

Confessions of a Cyster

Drinking Pink Stars

Exercising Diary of a Cyster

Foursight Wines, Inc.

Jess's Journey

Life Hands you Lemon's make Wild Jumbleberry Juice

Never a Moments Rest

Then I am Strong

This Little Kobler Family

Welcome to Joshland

If you are on the list, feel free to post this award to your blog, linking it to me. Then you can pass it on to 10 blogs that you love. Then let these bloggers know you have given them this award.

Eva and 65_redroses

With much anticipation, I watched 65_redroses last night. This is a documentary following Eva Markvoort, a young woman living with Cystic Fibrosis waiting for a double lung transplant.

WOW.

Watching this movie, I felt hollow. From the minute the movie started, I just kept thinking over in my mind...I can't believe we have the same disease. I can't believe Eva was fighting for her life at age 23. Waiting for a call to save her life. When I was 23, my biggest concern was who was going to be the designated driver. I met Ethan when I was 23. My life was just beginning. I had no clue what the reality was for others living with CF. Perhaps I still don't.



Networking with other CFers sometimes feels like life is happening in a dream. Reading someone's blog about CF health, pre or post transplant seems no different from reading a fictional book. I know these stories are happening, the people writing them are real, but sometimes it is hard to connect the words to a real human person with feelings and emotions. But seeing it in a documentary, Eva's story has become real. I saw her illness, her weakness, her pain. Seeing it just seems so much more powerful than reading it. It was as if I finally realized the truth about this disease.



The movie left me wondering about my own life, of course. Is it the fate of every CFer to encounter this stage of the illness? Is what I saw on the screen my own fate? If so when? How much time do I have before I am faced with making decisions about transplants? Will it be a slow or happen all of a sudden? At this point in my life and with my health, it seems so far from reality, I can't even relate.

Eva, you where a beautiful soul. Thank you for bringing the camara's into your life to share your journey with the world. I'm sorry you didn't win this battle. I miss you.

Work, Health...General update

You may recall an earlier post discussing budget problems at work and only being paid minimum wage. For the time being, minimum wage threats have been abated. I received a full pay check for the month of July. More importantly, I will not have to worry about the effects of not having my health insurance premium paid. Not sure what is in store for the budget/salaries at this point. There is talk the minimum wage issue might resurface in September.

I started to have a few days of sinus symptoms last week. The first couple days, I just tried to ignore it, thinking it would pass. But then on Wednesday the symptoms where too strong to ignore. I started a three week course of Cipro on Friday. I instantly starting feeling better. I am thankful for having nearly 5 weeks of relief, post IV treatment. I was hoping for a year, but you know how it goes. :)

And on a completely unrelated topic, I have been experimenting with making my own marinara sauce. This batch is looking really good. We will be taste testing tonight. I am hoping to make my next batch with home grown tomatoes.

Trying Something New

I have been doing daily sinus rinses for about two years now. The morning rinse is a part of my daily routine, like brushing my teeth and eating breakfast. The evening rinse, however, is not so routine. It is not that I blow it off, I just simply don't remember or think about it. I needed a new plan to be able remember. Other CFers are doing hours of treatments everyday that I don't have to do. I know I have it easy. I can't take that for granted.

I decided to schedule a time to do my evening rinse, as opposed to just doing it before bed time. So at 8:00 pm, I stop what ever I am doing and go do my rinse. It takes less than 5 minutes. I have been doing this for about two weeks now and it is really helping. I think this will help me stay on top of my evening treatment.

I'm not really sure how much these rinses help. I think that is why I was only remembering to do my evening rinse some times. But, I want to be doing everything I can, so doctors know what works and what doesn't. If I can honestly say I did everything the doctors recommended and still end up with an infection, at least I know that I tried.

Missing the CFRI Retreat

I received the results of my culture on Friday. It came back completely negative. Which means I really didn't give a sputum sample, but rather just spit. It is not possible to have a completely negative culture. I really respect the culture requirements for these events, so I decided on my own not to attend the CFRI retreat. It started today, so I am feeling sad i can't be there with my CF peeps. I was really looking forward to seeing everyone and meeting a few new friends too. :(

So Many Activities

An important part of my life is staying active. I have a goal of going to the gym four days a week. I meet this goal most of the time. There are also a lot of other ways to stay active. This past week was full of being active, I basically got in 7 days of active exercise. Here was my schedule for last week:

Sunday- I walked homeless dogs living at a local shelter for about 2 hours. I do this every Sunday morning.
Monday-Lifted weights and rode the stationary bike for 30 minutes.
Tuesday-Yoga Class
Wednesday- Dotty and I started a 6-week agility course class. Class time is one hour. A good work out for both of us!
Thursday-45 minutes on the elliptical.
Friday- This was really my day off from exercise. We went to the county fair. Still keeping active, however. We where there for about 8 hours, which involved a lot of walking.
Saturday-End the week with water aerobics, a one hour class.

This will be my schedule now until agility ends. Oh and the fair was a one time thing, of course. I'll be looking forward to this Friday and having a day off.