When Holly was diagnosed at 7 months, I was first overcome with deep sadness. This beautiful baby for whom I had so many hopes for the future, the child I longed to get to know was threatened by an ugly disease. Would she be a girly girl who loved bows in her hair or would she be a tomboy with perpetually skinned knees? Would she be musical, like me? Or would she be an organizational whiz like her dad? Certainly she would be beautiful; we could already see that. We were hoping she would grow into a compassionate and caring woman. Now I was wondering if she would live long enough for us to learn any of those things.
As I was grieving the potential loss and the certain hardships in her future, anger began to bubble up. It roiled and boiled in my stomach and forced its way upward, closing my throat until it ached, moving through my tear ducts forcing hot, salty tears to make my face wet and my nose run. Then it flew out my arm as I pounded the steering wheel. It screamed out my mouth, and I yelled, "NO! IT'S NOT FAIR!" I screamed at God and told Him, "You want to teach me something, you teach ME, NOT MY CHILD!" I was furious, so I raged on, as Shakespeare said, troubling "deaf heaven with my bootless cries." At least that's how it felt. Small and helpless as I was, I was shaking my fist at the God of the universe, and He wasn't answering.
He eventually did answer, though not from a booming voice from heaven or a bolt of lightning to strike me down for my daring insubordination, but by reminding me of things I'd read in the Bible. He reminded me of His special love for little ones and for ones who are frail. What God wanted from me was trust. Would I trust Him to take care of Holly in His own way even if it were painful for me? I wanted answers that I didn't get. I wanted to know that she would live a long life. I wanted assurance that she would be happy. I wanted God to take it back. Take the CF away. I wanted some doctor who would redo the sweat test and find the first had been wrong. I wanted to know she would be OK. After all, she was my baby. She held my heart. I knew that anything that hurt her would probably hurt me more. Certainly what happened to her would hurt more than anything that could happen to me. Since God didn't give me any of those answers, I needed to listen to the answers He was giving me to know how to deal with the future.
And then I knew. It was as if God had whispered to my mind. "Love her. Just love her. Love her more than you love yourself. Let me do what is best in her life, even if it means watching her hurt, even if it one day means watching her die." It's hard to imagine how or why a good God would let those things happen. But we live in a world that is not the way God created it. We are not the perfect beings God created us to be. Disease and pain entered the world when Adam and Eve took a bite of that fruit. In spite of that, God can make good happen out of awful, seemingly senseless situations. I don't know how He does that, but I've seen it happen.
I've learned a lot since that day 32 years ago. I've learned that it's OK to be angry with God. He's a big God. He has big shoulders, and He can handle my anger (and yours). I've learned that He faithfully hangs on to me and keeps me going when I see Holly hurting, and she's hurt a lot in her life.
Too much for her 32 years. Her first hospitalization came when she was seven and then yearly for the next few years. When she became a teenager, severe sinus disease and persistent polyps brought on more than 20 surgeries. In one when she was 17, the surgeon opened her up ear to ear across the top of her head. She shaved her head in preparation, and we learned that she looked pretty darn cute with no hair! That surgery brought on two very serious blood infections that nearly took her life. then in her 20s her life was pretty routine for a while, with hospitalizations here and there. It even got better for a while after her daughter was born.
Then 3 1/2 years ago she was diagnosed with a brain tumor. It had to be removed immediately. A long difficult recovery followed, along with six weeks of radiation that took her hair and her energy. Recently, still not completely recovered from that ordeal, she got the news of another brain tumor. This one inoperable.
In the midst of all the hospitalizations and illness, I watched God work good in her life as He brought her a loving husband who understood that she was worth dealing with all the crap of CF. God gave her a precious daughter who brings untold joy to all of us. I have watched Holly reach out to others who are hurting with boundless compassion, because she knows what it's like to hurt. She has become an amazing person, whom God uses to bring joy into the lives of people she doesn't even know. She is indeed the product of God's grace.
I still get angry at God sometimes, like when Holly told me about this new brain tumor. Now, however, I move quickly into gratitude for His immense goodness. After all, He gave me Holly. What could be better than that? Still, four years later, he gave me another beautiful daughter, Vanessa. More proof of His love. When I was first told that Holly had CF, the doctor (woefully out of date) said she probably wouldn't live to school age. Then I learned that age 18 was 50/50. And just before Mother's Day we'll celebrate her 33rd birthday. If I had no other proof of God's love and goodness than that, it would be enough.
Wednesday, February 29, 2012
Tuesday, January 3, 2012
The Role of Exercise
I haven't yet talked about the importance of exercise in the treatment of CF, and that is a serious lapse on my part. Exercise has been a part of Holly's regimen since she was old enough to run and jump. Before she was two, doctors told us that jumping on the trampoline was beneficial to kids with CF, because it helped shake the mucous free from the lungs to make it easier to cough out. As much as anything, I think it was the exercise and taking deep breaths that helped. We were very careful with the trampoline, and no one was hurt on or around it. However, I know that American Academy of Pediatrics recommends that parents keep children away from trampolines. That still leaves a host of other activities that kids love and that get them breathing hard and coughing. When Holly was really small, we would sometimes have short little races with her, pushing her to run as fast as she could, then encouraging her to cough. Then we'd sprint again, over and over until we saw she was wearing out or tiring of our game. Other times, she we'd get her on her big wheel, and when she was older she really enjoyed riding her bike.
After living in Dallas when she was diagnosed, then being transferred first to St. Louis then New Jersey, we moved back to Texas. Knowing the heat would be hard on her, we bought a smaller, older house in order to be able to afford a pool. As soon as I could, I taught both girls to swim. In the summer they spent most of their days in the pool with each other and/or friends. I have great memories of watching them and listening to them laugh as they swam and played in the water. Frequently, they'd swim most of the morning then eat lunch on the trampoline before getting back in the water. When she hit the pre-adolescent years, we got her involved in swimming. She first swam on the city team, and when she hit high school, she swam on that team. Sometimes, she swam so hard that she couldn't get out of the pool and had to be pulled out by team members, but it did the job and helped keep her lungs clean!
Holly had a somewhat unusual school path and left high school after her sophomore year. (More about that in another post.) That ended her competitive swimming for a couple of years until she left home for the University of North Texas. At that time, knowing that there was no one around to do chest physiotherapy (CPT), she started swimming again to help fill in the gap.
It helps to just think creatively. Put on your "thinking cap" to come up with ideas to spur your kiddo to exercise more. Dance, even in your living room, requires good deep breathing. I'm talking bouncing around, active dancing. The kind that kids really like. Basketball, soccer, even just "chase" will do it. Those kids of things also encourage your child to be outside rather than inside parked in front of the brain-draining television.
For more encouragement, check out Jerry Cahill's You Cannot Fail through the Boomer Eaiason Foundation's website. Jerry (who is 55!) was a pole-vaulter for a long time and now coaches it. He still finds ways to keep exercising even when he has to carry his oxygen with him. He is a real inspiration!
Let me know what you use with your kiddos to help keep them breathing deeply and coughing. This is a great place to share!
After living in Dallas when she was diagnosed, then being transferred first to St. Louis then New Jersey, we moved back to Texas. Knowing the heat would be hard on her, we bought a smaller, older house in order to be able to afford a pool. As soon as I could, I taught both girls to swim. In the summer they spent most of their days in the pool with each other and/or friends. I have great memories of watching them and listening to them laugh as they swam and played in the water. Frequently, they'd swim most of the morning then eat lunch on the trampoline before getting back in the water. When she hit the pre-adolescent years, we got her involved in swimming. She first swam on the city team, and when she hit high school, she swam on that team. Sometimes, she swam so hard that she couldn't get out of the pool and had to be pulled out by team members, but it did the job and helped keep her lungs clean!
Holly had a somewhat unusual school path and left high school after her sophomore year. (More about that in another post.) That ended her competitive swimming for a couple of years until she left home for the University of North Texas. At that time, knowing that there was no one around to do chest physiotherapy (CPT), she started swimming again to help fill in the gap.
It helps to just think creatively. Put on your "thinking cap" to come up with ideas to spur your kiddo to exercise more. Dance, even in your living room, requires good deep breathing. I'm talking bouncing around, active dancing. The kind that kids really like. Basketball, soccer, even just "chase" will do it. Those kids of things also encourage your child to be outside rather than inside parked in front of the brain-draining television.
For more encouragement, check out Jerry Cahill's You Cannot Fail through the Boomer Eaiason Foundation's website. Jerry (who is 55!) was a pole-vaulter for a long time and now coaches it. He still finds ways to keep exercising even when he has to carry his oxygen with him. He is a real inspiration!
Let me know what you use with your kiddos to help keep them breathing deeply and coughing. This is a great place to share!
Monday, January 2, 2012
2012
Today is January 2, 2012. I hope for all of you that this is a an exceptional year of growth and health for you and yours!
There's a great website I suggest you visit: http://esiason.org/thriving-with-cf/you-cannot-fail.php featuring Jerry Cahill and the Boomer Esaison Foundation. Jerry has recently launched his I Cannot Fail effort to encourage those with CF and others to be the best they can possibly be. Be the hero of your own story is one of my favorite of Jerry's sayings. You can read about him and buy his book, a T-shirt and/or wrist band at this site. I strongly encourage you to do so.
Through Jerry I also learned of Moganko for CF . It's a great blog by another man with CF. He is using his "friend," a puppet/muppet named Monganko, to spread the word about CF and encourage those who have it to take care of themselves. He's starting a campaign to get the Muppets to join him to raise awareness about CF. You can join his efforts at the site.
We have more people than ever before promoting health for our sons and daughters no matter their age. I am grateful to them and to those who raise money for a cure. We need them all. Thank you Jerry, Josh and the CF Foundation for all your efforts!
Caren
There's a great website I suggest you visit: http://esiason.org/thriving-with-cf/you-cannot-fail.php featuring Jerry Cahill and the Boomer Esaison Foundation. Jerry has recently launched his I Cannot Fail effort to encourage those with CF and others to be the best they can possibly be. Be the hero of your own story is one of my favorite of Jerry's sayings. You can read about him and buy his book, a T-shirt and/or wrist band at this site. I strongly encourage you to do so.
Through Jerry I also learned of Moganko for CF . It's a great blog by another man with CF. He is using his "friend," a puppet/muppet named Monganko, to spread the word about CF and encourage those who have it to take care of themselves. He's starting a campaign to get the Muppets to join him to raise awareness about CF. You can join his efforts at the site.
We have more people than ever before promoting health for our sons and daughters no matter their age. I am grateful to them and to those who raise money for a cure. We need them all. Thank you Jerry, Josh and the CF Foundation for all your efforts!
Caren
Thursday, December 22, 2011
Remembering
On the twelfth of December 32 years ago, Holly was diagnosed with CF. Back then, I was afraid to hope that I would have 32 years with her, yet here we are, and I am so grateful. Before Holly's diagnosis I felt a sort of elation as Christmas drew near; it was my favorite time of year. Now, however, December is hard for me. I experience an intense sadness that dampens my spirits. This year, though, I'm trying to focus on the joy of the season, the joy of my two daughters and three precious granddaughters, and, not least of all, the joy of Holly's good health. Yes, she has her problems, but she is so much healthier than we ever dared hope all those years ago. And I am grateful. Those of us whose children are threatened by CF know what it is to live with fear. It is ever present in the backs of our minds. And, if we are wise, we never take one day, one breath for granted. I have had the privilege, the joy, of Holly for 32 1/2 years now. It's still not nearly enough. So I'm wishing, praying for another 32 healthy years. Merry Christmas, Holly, and thanks for sticking around.
Wednesday, November 23, 2011
I'm thankful!
This Thanksgiving, I have much to be thankful for, not the least of which is Holly's good health and research that could result in truly effective treatment for her in the future. When she was diagnosed in 1979, the average life expectancy was 18, and now it's double that. Holly is much healthier at this stage than we ever dared hope. She is married to a wonderful man, and nine years ago, she gave birth to a precious little girl, Murren.
In October, Holly was hospitalized for lung and sinus infections. She had minor sinus surgery to clean her out and relieve the sinus headaches that had become daily occurrences. She was in for a week then went home on IV, oral and inhaled antibiotics. After she finished the antibiotics, it took her a couple of weeks to recover from the effects of the antibiotics, then she really started to feel better. Yea!
One of the interesting things, which I've noted here earlier, is that every time she's sick it's like the first time all over again. I always hurt and grieve for her and the normal life that she strives for, but will never really be. I try not to be over-dramatic, and I know that Holly does all the things she does, including hositalizations so that she can live a life that as close as possible to normal.
I have to also say that I'm thankful for Holly's attitude toward it all. She may feel awful, but she rarely complains. She's an amazing woman who is an exceptional mom, a great daughter, and, from what I've heard from others, a generous friend. I don't know how she has the energy to do all that she does.
I must also say that I'm thankful for Don Pfender, the young man who convinced my husband and I to have another child after Holly, despite the contrary advice of physicians. Because of him and his wise words, we had Vanessa Elizabeth Dawn. (Dawn is in honor of Don Pfendner.) Vanessa is my second personified blessing. Elizabeth means encourager, and she truly is. When she was small, we called her our cheerleader. She knows just what to say and do to encourage me just when I need it.
Thanksgiving is a truly special time for me with so much to be thankful for. I hope you'll join me this season in expressing gratitude for the many people and things we have to celebrate.
In October, Holly was hospitalized for lung and sinus infections. She had minor sinus surgery to clean her out and relieve the sinus headaches that had become daily occurrences. She was in for a week then went home on IV, oral and inhaled antibiotics. After she finished the antibiotics, it took her a couple of weeks to recover from the effects of the antibiotics, then she really started to feel better. Yea!
One of the interesting things, which I've noted here earlier, is that every time she's sick it's like the first time all over again. I always hurt and grieve for her and the normal life that she strives for, but will never really be. I try not to be over-dramatic, and I know that Holly does all the things she does, including hositalizations so that she can live a life that as close as possible to normal.
I have to also say that I'm thankful for Holly's attitude toward it all. She may feel awful, but she rarely complains. She's an amazing woman who is an exceptional mom, a great daughter, and, from what I've heard from others, a generous friend. I don't know how she has the energy to do all that she does.
I must also say that I'm thankful for Don Pfender, the young man who convinced my husband and I to have another child after Holly, despite the contrary advice of physicians. Because of him and his wise words, we had Vanessa Elizabeth Dawn. (Dawn is in honor of Don Pfendner.) Vanessa is my second personified blessing. Elizabeth means encourager, and she truly is. When she was small, we called her our cheerleader. She knows just what to say and do to encourage me just when I need it.
Thanksgiving is a truly special time for me with so much to be thankful for. I hope you'll join me this season in expressing gratitude for the many people and things we have to celebrate.
Saturday, September 24, 2011
My hero!
Today was the CF Climb for Life here in Dallas, in which we climbed the stairs of the Bank of America tower and raised donations to benefit CFF. There I met up with the leader of our team, Beth, whose son, John Goldberg, died one year ago today, she showed up along with her family to support her and our team, which was called, appropriately: For the Love of John.
It was also a family affair for me. Holly was there, determined to climb, along with her husband, John, and their nine-year-old daughter Murren. Holly decided that she wanted to try to climb the whole way - 70 stories. I was hoping to make it 23, which was the first official stop. She left with a big smile on her face, accompanied by Murren. John left later with those planning to go to the 42 floor, and I was last.
When I arrived, huffing and puffing, to the 23rd floor, I was taken, via elevator, to the 70th floor to await the others and join in the after-party. I met up with John and we both kept looking for Holly and Murren. Finally, another member of our "For the Love of John" team found me (It happened to be the sister of John for whom our team is named.) and told me that she had met up with Holly and Murren on the 64th floor. They were going to make it!
When I heard that, I elbowed my way (as politely as possible) to the front of the welcoming group, so I would be the first to see her. I didn't have to wait long before she came through the door, triumphant, but emotional to be The One to accomplish it. We fell on each other and cried together. She is truly amazing. None of us, including her, ever thought she could make it all the way, yet there she was.
That determination that God gave her is what has kept her going through some very tough times in her life and will stand her in good stead in the future. May I just say, she's my hero!
It was also a family affair for me. Holly was there, determined to climb, along with her husband, John, and their nine-year-old daughter Murren. Holly decided that she wanted to try to climb the whole way - 70 stories. I was hoping to make it 23, which was the first official stop. She left with a big smile on her face, accompanied by Murren. John left later with those planning to go to the 42 floor, and I was last.
When I arrived, huffing and puffing, to the 23rd floor, I was taken, via elevator, to the 70th floor to await the others and join in the after-party. I met up with John and we both kept looking for Holly and Murren. Finally, another member of our "For the Love of John" team found me (It happened to be the sister of John for whom our team is named.) and told me that she had met up with Holly and Murren on the 64th floor. They were going to make it!
When I heard that, I elbowed my way (as politely as possible) to the front of the welcoming group, so I would be the first to see her. I didn't have to wait long before she came through the door, triumphant, but emotional to be The One to accomplish it. We fell on each other and cried together. She is truly amazing. None of us, including her, ever thought she could make it all the way, yet there she was.
That determination that God gave her is what has kept her going through some very tough times in her life and will stand her in good stead in the future. May I just say, she's my hero!
Sunday, July 10, 2011
Holly Post #2
At 32, and as a person who's never been content to simply do what others may think is best, I've learned a lot about how to manage my CF. I would urge you, as moms, to become your child's advocate, studying what is out there, the choices you/he/she have that may improve your child's health and longevity. What follows are tips you might find useful in your own caregiving. If you have questions, please comment, and I'll do my best to answer.
Hypertonic Saline - There are different percentages of dilution, but the key is just to use the highest salinity that your child can tolerate: the saltier, the better. In 2006 I realized that my lung function had dropped slowly but substantially over the course of years. From my high in college, I'd dropped approximately 50 points! I had to fight to be allowed to try it, but the results were phenomenal! In six month's time I had regained 40 points and no longer struggled to clear the sludge in my lungs. That is what I had noticed the most and sought to remedy. I would cough and cough and cough ‘til I could hardly catch my breath, and my head would hurt, and yet, the mucus deep in my lungs - that I could feel there - wouldn't budge... until Hypertonic Saline. You can buy this prepared in different dilutions or you can make your own at home. I've done both. I still use 7% Hypertonic.
Zantac/Prevacid/Nexium (and the like) - In 1991 I was taking 12 enzymes with every meal and still having tummy troubles all the time. (That was back in the day when they just added more & more enzymes.) Then my GI doc prescribed Zantac (That was the new big thing.), and my tummy got better. After my issues resolved, we were able to bring my enzymes down to only six. Over the years as I've gotten on better PPIs, I've been able to bring down my enzymes even further. I now take Prevacid twice a day and only three Creon 24s with meals.
The Vest (of course) - Before the Vest we had manual percussion. My family never had a percussor, and about high school I quit doing the manual treatments. I was swimming lots and competitively and relied on that exercise (which was excellent airway clearance as well as aerobic exercise) solely all through college. I got the Vest in the Summer before I got married. If you have one, you know how wonderful the Hill-Rom Vest people are at making sure you get a Vest no matter what your financial situation is. I have used my Vest faithfully for 12 years now. It is great, because now as a mother in a single-car family, getting to a place where I can swim isn't feasible. And in Texas and Alabama, the heat prevents me from outside exercise several months of the year. Though I do (try to) exercise inside, it is never a replacement for the Vest.
Nutrition - I know that CF clinics talk a lot about calories and fat and vitamins and sodium, and those are good things, but there is a lot more to nutrition than just that. Educating myself has helped me great deal. (I did notice at CFIT this year that the approach was more holistic than in the past and was very pleased). I had been taking iron, ADEKS and calcium for years. Then, I began taking Reliv supplements (a whole-food-based supplement) in 2002, just months after my daughter was born. At that time I was really low, drained physically. I noticed an improvement immediately! Since then, I have continued Reliv and added JuicePlus+ (an organic fruit & vegetable supplement) and have continued to notice improvement over time. In addition to these things I have worked with a Naturopath who has helped me through particular issues and crises of health. I have not used these to replace medications like enzymes or aerosols, I have simply added nutrition therapies. I would love to spend more time on this but maybe I'll save that for another post.
Brovana/Forodil - Beginning in about 2009, I had noticed that my albuterol didn't seem to be lasting very long. After a few hours I felt that I needed another aerosol. My lung function was still good and stable, so I didn't know what was going on. During a hospitalization in February 2011, I was put on Brovana in addition to albuterol. What a difference! I felt like my lungs stayed wide open ALL DAY! Once home I switched to Forodil. The usual way of using these is to alternate treatments with the Brovana and albuterol, but I have found that it works best for me (and the MD approved) to use the Forodil immediately before my albuterol treatment. This has brought me a freedom that I've not had for several years of skipping a treatment occasionally. For some time, I just could not skip a nighttime treatment because I would either not sleep for the coughing and shortness of breath, or I would awaken in the night and have to do the albuterol. And I couldn't skip a morning treatment because I would be so tired and short of breath in tasks and coughing constantly. But, now if I come home late or particularly tired, I just do the Forodil aerolizer and go straight to bed. Or if I have to get up and out early, occasionally I will just do the Forodil and go about my day without struggle. Now, this is only an occasional skip. I still have to be diligent to do full treatments (Forodil, albuterol, Pulmozyme, Hypertonic Saline, and Vest) most mornings and evenings. This allows me a greater freedom in my social life, which is wonderful!
Nutramagen - this is the infant formula I was placed on immediately after diagnosis. As a 7-month old, my major symptom was malabsorbtion. The doctors warned that the formula was terrible tasting and I would probably reject it at first, but I didn't. I took the first bottle, sucked it down, and smiled at it. Problem solved! I quickly began gaining weight and thriving. Of course, that was 1979 and now they have, not only the formula, but enzymes for infants so that they can drink breastmilk or other formulas.
Probiotics - I'm not just talking about acidophilus, though that is certainly better than nothing at all. I'm talking about multiple strains of beneficial bacteria in massive quantities. I like Nature's Sunshine Probiotic 11 and Solaray Multidophilus 12. Over the years antibiotics have become harder and harder on my body, and, if I don't take probiotics with and after my antibiotic rounds, I am miserable. It can take months for my body to recover from the thrush, diarrhea and upset stomach. So while on the antibiotics, I take as much as I can afford, and usually the cheap stuff since I know it's going to get killed off. I also eat live active-culture yogurt by the quart. After I'm off the antibiotics, then I bring in the higher quality stuff and continue eating the yogurt. When things seem to have returned to normal, I scale back to simply taking enteric-coated acidophilus every morning and, usually by this time, I'm sick of yogurt so I take a break.
I hope you find this helpful. And, if you find something you're thinking about trying, keep in mind that your doctor may be resistant. Don't just avoid telling him/her. Do your research, think it all through carefully. As I mentioned, I've had to fight sometimes to be allowed to try things that, ultimately, have had a positive impact on my life and health. So, just because you have to be persistent doesn't mean you shouldn't try it!
Hypertonic Saline - There are different percentages of dilution, but the key is just to use the highest salinity that your child can tolerate: the saltier, the better. In 2006 I realized that my lung function had dropped slowly but substantially over the course of years. From my high in college, I'd dropped approximately 50 points! I had to fight to be allowed to try it, but the results were phenomenal! In six month's time I had regained 40 points and no longer struggled to clear the sludge in my lungs. That is what I had noticed the most and sought to remedy. I would cough and cough and cough ‘til I could hardly catch my breath, and my head would hurt, and yet, the mucus deep in my lungs - that I could feel there - wouldn't budge... until Hypertonic Saline. You can buy this prepared in different dilutions or you can make your own at home. I've done both. I still use 7% Hypertonic.
Zantac/Prevacid/Nexium (and the like) - In 1991 I was taking 12 enzymes with every meal and still having tummy troubles all the time. (That was back in the day when they just added more & more enzymes.) Then my GI doc prescribed Zantac (That was the new big thing.), and my tummy got better. After my issues resolved, we were able to bring my enzymes down to only six. Over the years as I've gotten on better PPIs, I've been able to bring down my enzymes even further. I now take Prevacid twice a day and only three Creon 24s with meals.
The Vest (of course) - Before the Vest we had manual percussion. My family never had a percussor, and about high school I quit doing the manual treatments. I was swimming lots and competitively and relied on that exercise (which was excellent airway clearance as well as aerobic exercise) solely all through college. I got the Vest in the Summer before I got married. If you have one, you know how wonderful the Hill-Rom Vest people are at making sure you get a Vest no matter what your financial situation is. I have used my Vest faithfully for 12 years now. It is great, because now as a mother in a single-car family, getting to a place where I can swim isn't feasible. And in Texas and Alabama, the heat prevents me from outside exercise several months of the year. Though I do (try to) exercise inside, it is never a replacement for the Vest.
Nutrition - I know that CF clinics talk a lot about calories and fat and vitamins and sodium, and those are good things, but there is a lot more to nutrition than just that. Educating myself has helped me great deal. (I did notice at CFIT this year that the approach was more holistic than in the past and was very pleased). I had been taking iron, ADEKS and calcium for years. Then, I began taking Reliv supplements (a whole-food-based supplement) in 2002, just months after my daughter was born. At that time I was really low, drained physically. I noticed an improvement immediately! Since then, I have continued Reliv and added JuicePlus+ (an organic fruit & vegetable supplement) and have continued to notice improvement over time. In addition to these things I have worked with a Naturopath who has helped me through particular issues and crises of health. I have not used these to replace medications like enzymes or aerosols, I have simply added nutrition therapies. I would love to spend more time on this but maybe I'll save that for another post.
Brovana/Forodil - Beginning in about 2009, I had noticed that my albuterol didn't seem to be lasting very long. After a few hours I felt that I needed another aerosol. My lung function was still good and stable, so I didn't know what was going on. During a hospitalization in February 2011, I was put on Brovana in addition to albuterol. What a difference! I felt like my lungs stayed wide open ALL DAY! Once home I switched to Forodil. The usual way of using these is to alternate treatments with the Brovana and albuterol, but I have found that it works best for me (and the MD approved) to use the Forodil immediately before my albuterol treatment. This has brought me a freedom that I've not had for several years of skipping a treatment occasionally. For some time, I just could not skip a nighttime treatment because I would either not sleep for the coughing and shortness of breath, or I would awaken in the night and have to do the albuterol. And I couldn't skip a morning treatment because I would be so tired and short of breath in tasks and coughing constantly. But, now if I come home late or particularly tired, I just do the Forodil aerolizer and go straight to bed. Or if I have to get up and out early, occasionally I will just do the Forodil and go about my day without struggle. Now, this is only an occasional skip. I still have to be diligent to do full treatments (Forodil, albuterol, Pulmozyme, Hypertonic Saline, and Vest) most mornings and evenings. This allows me a greater freedom in my social life, which is wonderful!
Nutramagen - this is the infant formula I was placed on immediately after diagnosis. As a 7-month old, my major symptom was malabsorbtion. The doctors warned that the formula was terrible tasting and I would probably reject it at first, but I didn't. I took the first bottle, sucked it down, and smiled at it. Problem solved! I quickly began gaining weight and thriving. Of course, that was 1979 and now they have, not only the formula, but enzymes for infants so that they can drink breastmilk or other formulas.
Probiotics - I'm not just talking about acidophilus, though that is certainly better than nothing at all. I'm talking about multiple strains of beneficial bacteria in massive quantities. I like Nature's Sunshine Probiotic 11 and Solaray Multidophilus 12. Over the years antibiotics have become harder and harder on my body, and, if I don't take probiotics with and after my antibiotic rounds, I am miserable. It can take months for my body to recover from the thrush, diarrhea and upset stomach. So while on the antibiotics, I take as much as I can afford, and usually the cheap stuff since I know it's going to get killed off. I also eat live active-culture yogurt by the quart. After I'm off the antibiotics, then I bring in the higher quality stuff and continue eating the yogurt. When things seem to have returned to normal, I scale back to simply taking enteric-coated acidophilus every morning and, usually by this time, I'm sick of yogurt so I take a break.
Neti Pot - I began using a Neti Pot to rinse my sinuses about 5 years ago. After years of chronic infection, inflammation and headaches, I finally broke the cycle. My sinuses took a while to become clear and during this time I rinsed my sinuses (from the left AND right) twice a day. After they became clear, I rinsed only one way once a day and now I only rinse when things become congested. I very rarely have sinus infections now and most days are headache-free. On the rare occassion that I do get an infection, I have been able to treat it at home without antibiotics and have not needed a surgery since using the Neti Pot.
I hope you find this helpful. And, if you find something you're thinking about trying, keep in mind that your doctor may be resistant. Don't just avoid telling him/her. Do your research, think it all through carefully. As I mentioned, I've had to fight sometimes to be allowed to try things that, ultimately, have had a positive impact on my life and health. So, just because you have to be persistent doesn't mean you shouldn't try it!
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