Monday, August 29, 2011

Moments That Matter Most

"We would do well to slow down a little, proceed at the optimum speed for our circumstances, focus on the significant, lift up our eyes, and truly see the things that matter most! The four key relationships in our life are: with our God, with our families, with our fellowman, and with ourselves.... As we evaluate our own lives with a willing mind, we will see where we have drifted from the more excellent way. Let us joyfully partake of them in their simplicity and plainness."

^^ above is a couple random excepts from a talk President Uchtdorf gave that goes along with one of my favorite videos the church has put out. It's such a simple & sweet video with such a power message. It is so easy for us to get caught up in every day life. We over book ourselves, we spend too much time watching tv or on the computer & not enough time enjoying the simple things or spending quality time with loved ones. I love when President Uchtdorf say, "proceed at the optimum speed for our circumstance." That really hits home for me. There are many times where I have felt inadequate because I've had to slow down or put things on hold because of CF. My biggest example of this was this last spring semester when I had to withdraw from all my classes & move back home with my parent because I had gotten to sick to continue on with school & to sick to live on my own for the time being. This was a very humbling time. I had to realize what was most important in my life and I had to accept myself for all my flaws. I spent a lot of time finding the little things in life that were going right, that I could be grateful for; including all the support I got from my family and some of my better friends. It could do us all good to slow down a little bit, take a look around out the beauty all around us. Turn off our electronics, slim down our schedules were we can & spend some more time loving and appreciating those we have in our lives & all the blessings & beauty that surround us. Don't forget to take time out to care your yourself. Don't lose yourself out there in the world. Always find time to strengthen your relationship with our Heavenly Father. Without him none of this would be possible. Make time for church, go on a date (with a spouse a friend, even a sibling), smile at someone while you are out & about, play games with your family.... ect. Never lose sight of those things that matter most

Wednesday, August 17, 2011

A little concern would be nice.

**Disclaimer: This post is not a happy positive one. I needed to vent and get out my frustration out from the last couple weeks with concerns about my health. Just thought I'd let ya'll know before you kept reading (:

Back story for today's story:

I've explained how our clinic works a few times, but just in case I'll do it again. So here in Las Vegas there are only 3 pediatric pulmonologist & one of those doctors started the CF clinic. At the time there weren't as many adult CF'ers, it was the only CF clinic within 5 hours of vegas and he had his original practice to run along side that so he searched long & hard to find a doctor that could do the Wednesday clinic appointments for adults. When I first switched over it was weird. She had been doing it for years & years so I didn't think much about it plus I was leaving for school. So even though I didn't care for her much I figured no big deal. Well over the last year I've been having a ton of serious complications with my CF. I see my real CF doctor 1-3 times a month since I moved back home in March and before that I was seeing my doctor in Reno twice a month who talked to my doctor back home. I never once I saw the clinic doctor. Well now that I am back I have to see her for clinic every 2 or 3 months. So when I go in to see her she goes well there are a lot of notes here from Doctor N. (my real doctor) why don't you tell me whats been happening, and I spend the next 10 or 15 mins catching her up on my life.

The past two weeks:

*2 weeks ago I had my clinic. I had been seeing the doctor once a week for a month while on IV's. My lung function went back up to almost my base line and things were great. He decided I didn't need to come in the following week and just wait 3 weeks for my clinic appointment. So of course I met with the doctor & we talked about the last 2 months & the complications. We looked at my PFT's and they had dropped 14% all the way down to the low 30's which is lower then they were when I was admitted to the hospital in Reno at the beginning of March. I was sure I was being admitted & I was making plans in my head for being in the hospital. Well she decided that would be pointless and she thought it was just asthma. I told her I've never dropped this much for just asthma & even though I was having wheezing problems I felt like it was more serious then that. I was also really concerned because school started in 2 and 1/2 weeks & I needed to be better for that. She was still sure it was asthma and some steroids would solve our problem and told me she had no idea what she'd be treating if she started IV's s she wasn't going to do it (in my mind I thought put me in the hospital and run test till you figure it out) but she wasn't gonna hear it and sent me out with prescriptions.

* Today I went back to check up on my PFT's (at the clinic again not my main office). My wheezing was gone and I was breathing easier, but I was still exhausted all the time and losing my breath a lot so I knew I wasn't going to be happy with my numbers. I was right they weren't better they had actually gone down 1% more. Not much but something. Instead of me waiting for the doctor to see my numbers they said they would show her when she was done for the day and let me know what she wants to do. I never heard back from them. I want to be put in hospital. I need to figure out what's wrong so I can get through this semester, there is only a week and a half till school starts. But mostly I am frustrated with the lack of concern from the adult clinic doctor. She doesn't know me. She doesn't know what a complicated history I have always had. I'm also hurt that she didn't listen to me when I was talking about my frustration and disbelief that the steroids wouldn't do the whole job, but I gave her the benefit of the doubt. Sure I haven't been through years of medical school, but I have had MY cf for almost 21 years. I know my body and I knew something was wrong.

I am calling in tomorrow to see what the clinic doctor said. If I don't have a serious answer I am calling my REAL CF doctor and asking him about fitting me in this week. He is so great to me. He listens to all my opinions & concerns and tells me as soon as I am feeling sick to call him and he would squeeze me in so that's what I am doing. I am not okay with not being listened to & I am not okay with taking my 15% drop into the low 30's lightly. I have a lot a head of me and I am going to school this semester. My base line is 48-50% not 33. It scares me to see my numbers this low and it scares me to be out of breathe from just getting ready for the day, but some how my clinic doctor doesn't seem to rushed. When I go in to see my real CF doctor I am going to talk to him about letting me see him for my clinics instead of the adult one. This is the second time I had a big drop in PFT's that she didn't admit me when I wanted to be. The first time I ended up being admitted a few weeks later by my main doctor. I need a doctor to listen to me. I need her to show more concern. I just don't feel like I'm in the best of hands & I'm not okay with that.

Phew, that felt great to get off my chest!

Tuesday, August 2, 2011

Blogger Challenge on CF progression & control

A fellow CF'er, Piper, wrote a blog about some questions someone asked her about the tx process & the worries of not being "good enough" to qualify for a transplant. She then offered a blog challenge on how we fell about CF progression & control of it.

* CF Control: the worlds biggest oxymoron.

Every case of CF is unique. Anyone can see that within the CF community & within my own family. All 3 of us kids have CF but there not much we have in common besides our diagnosis and mutation. Why did my sister cultured MAC, but my brother & I haven't. Why do I have no problem with my digestive system and pancreas, but my brother and sister do. How about me going into the hospital or doing at home IV's multiply times a year, where my brother and sister can go a year or more without needing more then oral antibiotics? CF is unpredictable. How can you control something that you can't predict?

A HUGE word within the CF community is compliance. So many people think that with compliance to your doctors every wish & word is the answer to our problems, but the reality of that is it's not even close! I do 3-4 treatments a day, never miss a pill, I'm staying active but I can't seem to stay off antibiotics for more then a month or so at a time. My sister does two treatments a day, does sports all year long for her high school but still cultured MAC & my brother well lets just say he's in the "rebellion stage" I think every CFer goes through where he'd rather not do a treatment and when he misses it doesn't bother him. Yet his numbers are pretty stable and still high. One of the most frustrating things for me is when I am being 100% compliant, but we can't seem to keep me healthy. As most of you know these last 11 months have been hard. I have had my port for about a year now and I have only had it flushed 4 times because it's been in use the rest of the time. Over the last 6 months I've only had about a month or 2 off all together from some sort of antibiotics. I've had a bronch that didn't give us the answers we were hoping for, spent time in the hospital on oxygen because my body wasn't producing enough of it's own & I had to withdraw from school because I was to sick to get down to campus.

Don't get me wrong, compliance is a HUGE part of our lives, but it doesn't solve everything. We still get sick, we still have mean ole bugs throwing parties in our lungs that just don't want to leave & sometimes don't ever leave once you culture them. Now this is starting to sound a little depressing. Yes, CF is a progressive disease meaning it will only get worse, but like I said CF is also unpredictable! No human knows how long they have on this beautiful earth & just because I have a chronic progressive disease doesn't mean I shouldn't plan to live to be 80 years old. I have dreams & hopes that I will work to accomplish till the day I die. I'm working on becoming a special education teacher. I go to church, and hang out with family. I have some of the most amazing friends. At one point I was living in an apartment 500 miles away from my family and doctors and I was doing great! I have plans to get married, have my own kids. Maybe I will even get to serve a mission with my husband one day. CF will never stop me from me dreaming & will definitely never stop me from doing everything in my power to accomplish those goals.

But with all that said I can't be naive. The life expectancy for someone with CF is only 37, but that means there are those who live older then that. Every year there are new meds & new discoveries helping us live longer and healthier lives. I think progression & control go hand in hand. We do all we can (being compliant) to slow the progression of CF & enjoy the lives we have, but we have to know that there is so much that's not in our control. I don't know if at my next appointment I am going to culture a resistant bug of some sort making lung infections harder to treat, I don't know if my next sugar test will show I have CFRD (CF related diabetes) heck maybe I will go my whole life never having CFRD or culturing a resistant bug. Nobody knows, but as long as I am doing everything in my power to stay healthy, helping those around my that are struggling , encouraging those who are doing great & am still working towards my dreams I know I am living a great life and not letting CF hold me back! At times I might be upset, I might break down and cry. There are lots of times I feel so discouraged, but why work so hard to stay healthy to let it hold you down and leave you feeling like less. If I am going to work as hard as I can to stay healthy I am also going to try my hardest to count my blessings and live an amazing life.


Wanna participate in this blogger challenge? Here are the guidelines:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.