Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition

So yesterday I read the blog of a friend:
http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html
She posed a challenge, so I will do my best to answer her questions in hopes to reveal my outlook on cystic fibrosis to any who are curious to know what I think.

"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."

I wasn't diagnosed until I was 21, so I grew up sick. Although I wasn't just a sick kid; I was the sick kid that no one believed. I would complain and get accused of being lazy; trying to get out of school or some other obligation; or selfish. My parents say that they always knew something was wrong with me, but I think with no answers from the doctors that they started to doubt themselves. When I was 16 and needed my gall bladder out; I think everyone finally realized that I was sick and when they diagnosed my with pancreatitis they knew some thing had to be wrong. But it still took 5 years for them to figure out what it was. This was, for the most part, because as a child we did not have health insurance and honestly the information out there about CF was (at that time) minimal. Everyone thought that you had to fit into specific symptoms...boy were they wrong.

When I was diagnosed I was so happy to have a name, and I foolishly thought that meant we could start to fix it. After some research and a meeting with my CF doctor, I was terrified. I mean; all of the sudden I wasn't just sick I was dying. At least that was all I could focus on.

Life expectancy...

It took years for me to accept that I was as sick as they said, to want to fund raise, and to look beyond the dreaded "life expectancy." I had to figure out on my own, through research and joining a few CF support groups online that CF is different for everyone.
Sure it is progressive, but we all have different rates of progression. So I feel that it is inaccurate for doctors to tell patients (or caregivers) that they have a "mild" CF. There is no such thing, there can be mild symptoms but not mild CF. At least that is the conclusion I came to after meeting others with CF online and talking with my doctor.

Do I think CF is controllable? Not really. I mean certain aspects could be, like taking medication and using your vest; but the other aspects that cannot be controlled are genetic factors and in some cases environmental factors. You could pick up a bacteria at the beach or a friends pool, but also by using a public restroom or water fountain. So unless you put yourself in a bubble there is no way to protect yourself from every factor. Additionally even if you are extra careful and your best friend comes over to visit they could be caring a bacteria they picked up (at a pool, hot tub, or by sharing a drink with someone else). Not to mention those friends and family members who still visit with a runny nose or a cough. (even if allergies is the cause you are still spreading germs and bugs; you do still have germs in your snot!)
So I think we all have to do the best that we can, but not expect an easy road just because we are compliant and/or we exercise and take really good care of ourselves. Kinda like you can't win the lottery if you don't buy a ticket; you can't avoid getting a CF bacteria unless you don't have CF. (There are just too many factors, in my opinion) But I should say that I do think we need to work on what we can, influence the factors we might had sway over (environmental) to improve the health we do have.

I think it is crazy to lay blame on another CFer for getting sicker; because it is impossible to know all of the factors. The CFer themselves may not even be aware of all of the other factors. I don't think laying blame or judging helps in any situation; but especially not when dealing with an illness.

How do I stay positive?
I still find myself in a bit of denial every now and then; I am very self conscious about being sick. That, I'm sure, is because of my childhood. So I tend to try to do as much as possible to be "normal"; but in the end that is just a fancy way of saying I do too much to attempt to make up for the extra efforts of everyone else. I hate it when people have to do more, because I can only do 50% or less. (This is one of my biggest flaws.) To stay positive I:

1. Blog. I have this blog and another one (On the bright side); this one helps me vent, and the other I use to list my many blessings in life.
2. I take pictures and I cook. They are little things I do that help me be creative.
3. I cry. I used to think it made me weak. But I find that a good cry helps me "get it off my chest."
Last but not least, I am a very spiritual person. I'm not saying that is the only way to cope, just that it is helps me to cope. I don't go to church every Sunday, but I do not think God worries about physical attendance. The thing that matters is how we treat each other, not what church we go to. But again that is only my opinion.

So that's my input! I'll pass this on to my friends who read this CF or not. Here are the "rules."

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.

Another week come and gone...

So this week has been a busy one, but we all managed to get through it fine! Kate got sponsored for a cooking class this past week, and she got one for a class in August too. I’m so excited for her, although I think my legs might need a vacation afterwards! But seriously, Kate has this opportunity to work with an amazing chef; so I’ll do what I have to do to make sure it happens. I know moms brag about their kids but I really think I have a wonderful, talented, and awesome daughter.
Other than that I had NIH this week, and things went ok. Frank has started taking me and when he can’t my brother does. I can’t drive that far anymore. Anyhow he isn’t used to getting the run around or the, “we don’t know what to do with you speech”; so if you ask him how the appointment went it was disappointing. I guess I should feel that way too but somehow I just can’t find it in me anymore to get upset. I mean don’t get me wrong I do spend many a night crying over this whole mess that is my health, but that is out of frustration, I think. Maybe it’s disappointment too…???


So my CF doc tells me about an undiagnosed disease clinic that is at NIH, and she wants to try to get me in. I’m all for that, it seems like NIH discovered these “novel” mutations and then a few years later decided it was too much work to keep up with. At times I feel like a bug in a jar, but I must be an uninteresting bug because they don’t even seem to be watching me anymore. So while I do have hope that NIH might come through, I will not be surprised if they don’t.
I suppose I should get used to the idea that no one will ever really understand me medically speaking. It’s difficult for me to explain to people what I have because while it is a mitochondrial disease, they cannot tell me anything more specific. The only thing more frustrating; to me, than having an invisible disease is having to tell people that you have an unknown (invisible) disease.
So tonight I’m sitting online and relaxing typing this blog post and playing on face book. My sleep schedule has been thrown off. I didn’t take pain meds all week, as I was driving, so know that I’ve taken one it’s keeping me awake. Frank is up stairs drawing, but I think I’m going to sneak in and go to bed!

The truth about batteries

Since my last blog I have been trying to be more honest, and while it is getting easier - I still find myself sugar coating things for people. Its not that they don't understand but sometimes - they don't understand the depth of it (does that make sense) Not that it something everyone understands, hell even the NIH in Bethesda doesn't understand my mitochondrial disease.

The mitochondria are the little batteries/power houses of the human cells. They can be found in every cell except the red blood cell. The number in each cell varies depending on how much energy demands. (Think of it like having a pack of M & M's. All the M & M's in the pack are energy, but because I have two mutations the brown and the orange are defective. Each cell depending on energy needs is like a pack of M & M's, so some times the bag/cell has 25% defective mitochondria while the next bag/cell could have 60%.)

Most energy production happens inside the mitochondria, so you can imagine that people with mutated mitochondria get fatigued easy. And how easy varies on a day to day basis. One day getting out of bed is a chore while the next I can go grocery shopping. Additionally one day my digestive system has enough energy to work correctly and the next day - it doesn't. This link explains it much better than I could:


So even though it sounds far fetched that I'm not feeling well two hours after you saw me doing fine; it happens. I'm not lying to get out of hanging out, create drama, to cause problems, or to get things my way. Seriously. I have enough drama from the cells in my body - I don't need or want more.

There are several different mitochondrial diseases, with mine the doctors won't give me any specific name. The reason? My two mutations are rare, so rare that one of them is completely unique to me. So they don't know what to expect and neither do I. I have had symptoms since I was little, but no one realized it. I was clumsy and had poor balance. At 16 I started having noticeable muscle spasms. At 21 NIH figured out that it was not 1 but 2 mitochondrial mutations causing all the problems (IN addition of course to my cystic fibrosis). Now at 34 I have muscle aches, cramps, pain, fatigue and spasms; I don't absorb nutrients the way I'm supposed to. While People with CF have problems absorbing fat and fat soluble vitamins; I got a double whammy and have problems absorbing lipids, fat soluble vitamins, water soluble vitamins, and minerals needed to help my body function. (This is why sometimes I get confused and/or forget things) And they don't know whats next. Honest. I don't want to be sick, and I'm not being dramatic, but the doctors really have no idea what symptoms could be next. They do know that it is progressive, having a genetic progressive disease stinks but I find myself more afraid of the progressive genetic disease that keeps me and the doctors guessing. When I was diagnosed with CF they told me that with the proper care there is no reason I couldn't live to be 40. When I was told about my mitochondrial disease I was told that I may be in a wheel chair by 40.

Why am I putting this in my blog? So that people can read it and understand, hopefully; that I don't want your manufactured drama, your rumors and lies, and I don't want your pity. I want to live life, help my friends and family with real problems. I want to love (as sappy as that sounds) and not get hung up on the little things, and I want that for everyone else too. And I'm also putting this in my blog to get it off my chest, as it has been bothering me for the past few days.