I just found your blog recently. I have to say that your post excites me. To explain, I'll try to be brief, but I am never brief when explaining, and certainly not on a topic like this.
I grew up with an entrepreneurial, businessman, workaholic father and a stay at home mother. They were republicans. I am conservative politically, undoubtedly influenced by them. Conservative influence #1.
I have a master's degree in psychology, from a school with a behavioral perspective. That's the branch of psychology that is the most scientific. It's the if-you-can't-prove-it-with-empirical-research-then-it-ain't-so kind of psychology. None of that Freudian crap. My minor in college was biology. Conservative influence #2
At some point, after grad school, I gave my spiritual interests serious consideration and ultimately became a Christian. Conservative influence #3.
I am married to a Christian woman from a Christian family, whose mother works at the church where we attend, running the children's program where we teach Sunday school. Conservative influence #4.
We have a child with CF, our third of four kids. He's four. For about six months, we didn't know anything was "wrong" with him. For a few months, we hoped it was nothing. Then, for six months, we were on a serious quest with all kinds of specialists before we got a diagnosis.
Then, they figured out that his severe physical delays were the result of malnutrition resulting from the malabsorption component of CF. So, now we RELY on our traditional western medical doctors. My wife’s paternal grandfather was a physician. Western medicine is what
we know. Mostly, it’s what we trust, though admittedly, I am always skeptical enough to ask lots of questions and research on my own, even in the face of know-it-all doctors. But, as you know, our son would not live without the western medicine that keeps him alive and well.
So, we are sold on it. Conservative influence #5.
However… my mother was for many years an advocate of natural methods of preventative health care. She was forever doling out “wisdom” on how to live better and healthier through positive mental attitude, diet, lifestyle, etc. Some of her ideas were out there. I thought
she was a loon a lot of the time. Nevertheless, she was an influence, and in some ways a strong one even in this area, though not so conservative on this. Realistically, I never had much reason to give her ways of handling health too much serious thought, until…
Just over two years ago, I was about to turn 39. My dad was in the midst of numerous serious health issues. It concerned me, as I reflected on my age and what my genes might be coded for, e.g., diabetes among other things. I started to worry. And, BAM… I got sick… one thing after the next. It was crazy, the amount of stuff I dealt with in such a short time. The worst of it was chronic pain, in all the wrong places. Then, my IBS of 20+ years (which I had managed
by ignoring it and never seeing a doctor, or even talking about it) got MUCH WORSE! I could barely function. I was stressed, and very sick and at times convinced the end was near. Seriously.
I went to my doctor a dozen times in the course of a year. I saw a urologist a few times for various symptoms and various testing was done. I saw a gastroenterologist and had all those tests run. I was sure that one of the many tests would show I had cancer or some such
terminal illness. But, that never happened. My doctors gave me no diagnosis. They gave me pills, none of which helped, and many of which caused me unpleasant side effects.
At some point, a light came on. Actually, it was in prayer. I prayed all the time during this stuff, sometimes hours at a time. And, eventually, I realized that my mom, in her cuckoo alternative
healthcare ways, was never sick. My dad, who thought my mom’s ways were BS (they were divorced many years by then) and saw every kind of doctor and took every kind of pill, was always “sick” in some way or another. I believe the Lord showed stubborn ol’ me that there was
something to this alternative health care stuff.
I tried a few simple things instead of my pills and doctors. Changing chairs, trying a massager, going to a chiropractor, simple stuff like that. All of it helped, a little. Then, I decided to try acupuncture for pain. I was amazed that it helped. Then, I found a book on chronic pain from a psychological perspective and it helped almost overnight, truly. (Funny how once you realize that there might be something else going on other than a deathly illness that symptoms can
improve, at least in my case with no diagnosis.) I eventually found another acupuncturist to deal with my digestive issues. And, I found a book on healing severe digestive disorders naturally, which was a Godsend indeed. I have taken Chinese herbs and various supplements
from the health food store. All of that has helped way more than my doctors or their prescriptions.
Now, I am a convert. Alternative health care works! For me, it’s better than the traditional western stuff!?
But, what about my child with CF? I have been wanting to enhance his care via Traditional Chinese Medicine or some other method. But, he’s four. He can’t really tell me whether it’s helping in any meaningful way. And, I am not willing to throw out his MDs’ advice or direction – THEY ARE KEEPING HIM ALIVE AND RELATIVELY HEALTHY! But, the more thought I give to this, the more I know I have to do something to add in this enhancement. Lately, I have been wondering what to do, and when and how, and how to afford it on top of the various medical expenses we already have.
This summer, my CF child had his first hospitalization, for surgery to remove his tonsils, adenoids and clear his sinuses, with a week of IV antibiotics due to CF crap. Around that time, my forever-healthy mother was diagnosed out of the blue with pancreatic cancer. She actually went into the hospital for her second time, and into the ICU the day my son had surgery. Within a few days, my mom died, one month after her diagnosis was given. It was a shock. And, it startled me and made me question alternative health care methods a bit. But, I
have to recognize my own health improvements. So, I am now back to thinking more seriously about how to do this.
So, in reading your post, I am excited to have a resource to learn from, to gain an adult perspective from an intelligent CFer with so much to gain, and so much to lose. I hope that you post often on your experiences. Also, I hope that you will keep me posted, even
personally, through direct email. I am posting here nonetheless, because, as you did, I suspect there are others in the same shoes, who might be interested in exploring how to enhance traditional western medicine with alternative health care methods that might bring a new
level of health potential, despite the severity of CF and its foreboding genetic code of doom.
Peace be with you!
My response (slightly abridged):
Thanks so much for your letter and for sharing your story. It sounds like you're an extremely devoted CF dad who is working proactively to do the very best for his son -- you have no idea what a difference this can make in the long run! I also love that you called me an "intelligent CFer." I'll have to try and live up to the high expectations!
It's great to hear about your own health achievements with some more "alternative" forms of therapy/medicine/healing. I think you're absolutely right that sometimes these can even be better than "traditional" medicine, but obviously in the case of CF the two have to be used together. What really convinced me to at least try was a hospital worker (a nurse) who told me that in her experience, people who really trust and believe that they're going to get better tend to heal faster than those who are too worried or scared about their conditions to see past the pain. And obviously that's a generalization -- I'm not at all trying to say that simply being positive can get you out of the ICU and off the morphine, so to speak -- but I think there's some truth to it. After all, we all know and accept that our bodies receive signals from our brain, so it would make sense that the more positive those signals, the more positive the response. I also know a fellow CFer with some unrelated chronic pain issues who has found a lot of success treating with massages and acupuncture, though she also uses some more "traditional" routes as well. At any rate, I'm more than happy to be your "guinea pig" on this in some ways and give you an adult CFer's perspective on some alternative medicine techniques (there are other blogs out there that can do this too - Cystic Gal definitely uses some healing methods, and Sara from "Ocean Desert" recently wrote about how a positive thought process and some visualization helped her during a hospital stay). Just please remember that every CFer is different -- many of us respond differently to various "traditional" medicines, so I'm sure the same is true with alternative methods.
I would like to say for the record that even though your son is still little, it sounds as though you're giving him a great head start. I personally think that the three most important things for a CF child (besides, as always, loving parents) are parents willing to be proactive in treatment and seek out information, a strong grounding in personal responsibility for health maintenance, and as much normalcy as possible. Obviously there are never any guarantees in outcomes, but serious kudos go to you and your wife for such an awesome jump out of the starting gate.
I'm so sorry to hear of your son's admission, but I hope he's doing much better now that he's had his "tune up." Prayers that his lungs stay healthy, and know that there are SO many exciting and hopeful new therapies out there for young CFers that give me personally SO MUCH hope for the future.
**Okay, so I'm opening this up for a blogger challenge. If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field. But either way, I'd love to get a good discussion going on this!
1) What are your thoughts on "alternative" forms of medicine?
2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?
3) What does "healing" mean to you in the context of cystic fibrosis.
4) Anything else you want to say on this topic.
Enjoy the challenge!