Archive Page 2
January 23rd, 2012 by Michele
One reason we wanted to come to a our current location is so we can wear sandals year round. It is warm enough here to do so and the tourist-oriented shops sells them twelve months out of the year. We have long favored sandals as much as possible because we find that closed shoes promote smelly, itchy feet — in other words, skin infection of some sort. With our “sandals preferred” policy (combined with all the other things we do), our feet have gradually grown healthier and less prone to problems. With increased ability to favor sandals, we should see additional gains. As an unexpected bonus, walking in the surf (in either sandals or barefoot) is causing my feet to heal in unexpected ways. What I had thought was callouses seems to have really been some kind of infection. The depth of dead-looking skin is thinning and pinker, healthier skin is emerging, especially on my heels.
January 22nd, 2012 by Michele
I woke up with a sore throat. I walked down to the shore and soaked my feet for a bit, soaking up the salt and other minerals found naturally in sea water. My throat is much improved. I joke that I am part mermaid and that is why I have respiratory problems: I am like a fish out of water. The antidote to that is not boatloads of drugs. It’s getting me the nutrients I need found naturally in abundance in the ocean but much harder to come by further inland.
January 21st, 2012 by Michele
I get really bad floaters sometimes which means my vision can be really crappy at times. As best I can tell, it is a side effect of die-off and is probably due to higher-than-normal levels of detritus in the bloodstream. I had a rough day yesterday and could not look up while walking. I mostly looked at the ground in front of my feet. Today, my floaters are not so bad and I find myself looking ahead for part of the time when I walk. I should have a better day today than yesterday and I was surprisingly productive yesterday in spite of floaters and probably also fever and shock.
January 20th, 2012 by Michele
Earlier this month, I moved to a coastal town. I wanted to settle here six years ago while going through my divorce but was too sick to figure out how to make it work. Coastal climates are supposed to be good for people with CF. Yea, verily, we are finding it very beneficial. My son periodically goes out on the jetty as breathing treatment. I am not really ready for that. Just breathing the moist, salty sea air everyday is having enough impact. I sleep ten or twelve hours some nights and sometimes have diarrhea, all very familiar as part of the healing process from years and years of pursuing better nutrition and alternative remedies.
January 19th, 2012 by Michele
I had to mail a form today. I do not own a printer and do not keep stamps or envelopes on hand. A trip to the library allowed me to print four pages for sixty-five cents and a trip to the post office allowed me to purchase a single envelope with prepaid first class postage included. Yes, it is relatively expensive on a per item basis compared to buying in bulk. But I do a lot of stuff online or arrange for bills to come directly out of my account. So I only do this once every few months. It is well worth the hassle and small premium involved to help me limit how much paper I have at home.
January 18th, 2012 by Michele
I have been traveling under difficult circumstances and dealing with a lot of sunburn and minor injuries. There has been no opportunity to take a bath, only the occasional shower. So I have been unable to take salt water and apple juice baths like I normally do for such problems. We have found that eating pig skin (which you can get as a snack) or chicken skin (as part of a meal) speeds the healing process significantly.
May 29th, 2011 by Michele
The topic of whether or not alcohol is beneficial for people with CF has come up at least a couple of times on some list I belong to. One side swears they benefit, others roundly vilify alcohol. Below is my one of my emails on the topic. I touch on caffeine as well because that was also part of that particular discussion.
This is my personal experience. It kind of both agrees and disagrees with both sides of the debate. It’s just my experience and my thoughts and why I react the way I do.
I have never been crazy about alcohol. This runs in the family. My mother gets violently ill from wine and does not ever drink. (On the other hand, my father likely would have been labeled an alcoholic in this day and age with the way he went bar hopping in his youth and my mom bought him beer by the case.) I don’t like the taste of alcohol and I don’t like the impact it has on me. It really makes me feel awful. So I rarely drink. This has been true my whole life. For most of my adult life, I could tell you when I had my last drink in terms of “It was x month of x year at so-and-so’s wedding.” So, I’m not a fan. And neither is my son with CF. When he was about 14, we had a box of chocolates (that yellow box with all different varieties) and it was nearly empty. One of the few items left was a cherry cordial. My son grabbed it up and asked if he could have it. My then husband and I both gave each other a funny look. On the one hand, I didn’t want to forbid it and make it into a big deal. On the other hand, I didn’t really want to warn him beforehand and make it into a big deal. If he happened to like it, he was more than welcome to eat the cherry cordial on the rare occasions when we had a box of those chocolates in the house. He took one bite, made the most horrible face and spat it into the trash. Then we told him it contained alcohol. He was like “Ugh! I am NEVER going to drink!”
I’m 45. I’ve tried a few different alcoholic beverages over the years. The only thing I have found I tolerate at all well is Kahlua. My strong preference is to have it in a frozen drink like a mud slide or a Kahlua cappuccino (something they used to serve at Red Lobster — I assume they still do though I don’t think I have been to a Red Lobster in like 6 years or so). Why frozen? Because if my tongue is numb enough, I can hardly taste the alcohol. Really not a fan.
However, when I was being denied treatment and talked to like a hypochondriac and deathly ill, I found that a nightcap was one of the few things that helped knock back the constant, excruciating pain that pain killers weren’t doing much for. I ended up having a nightcap almost every night for roughly a year. By the end of the year, I typically had two doubles, which is the equivalent of four drinks. I was also taking daily hot baths because it was one of the few things that helped knock back the pain.
While mostly bedridden and sleeping up to 20 hours a day, I often had dreams or hallucinations that the Grim Reaper had come to my bedside and was talking with me (not that the Grim Reaper talks — it was wordless, but somehow conversation anyway). At some point, the Grim Reaper rode up to me on a black horse and leaned down and peered intently into my face. Then turned and rode off, with me running screaming after him “Take me with you! Don’t leave me here!” I woke up and realized I would live. (And wasn’t real happy because I realized the recovery would be very long and very hard, and it has been: 10 years and counting.) I also realized at some point that the hot baths and alcohol worked to knock back my pain because they knocked back the infection that the antibiotics were hardly touching. Daily application of alcohol and hot baths (and whatever else I was doing at the time) gradually got the infection under control and I began to slowly heal.
If alcohol is beneficial, I think it is primarily beneficial because it kills germs. Everyone knows it does that. That’s exactly why a different type of alcohol is sold for topical use as a medicinal thing and can be used to sterilize medical stuff. Now that I have infections under control, I have gone back to not drinking. (And it has made me wonder if some alcoholics have unrecognized infections they are self-treating for.) I don’t recall the last time I had a drink. I’m sure it’s been a few years. I have other ways to treat for infection now which work very well for me. Though, really, I don’t see any reason to vilify alcohol. It’s common knowledge that the prescription drugs we take also have negative side effects and people seem to just accept that.
A couple of other points I will touch on: I consume a lot of caffeine. I prefer it to albuterol and other drugs I used to take. If I am exposed to something at work that makes me all red in the face and causes trouble breathing, I can go grab a diet coke and chocolate bar from the vending machines (wipe down my hair and face) and people think I am just having a snack rather than thinking I am having some kind of attack. With getting healthier, I consume less caffeine than I used to. I recently began drinking coffee at work, something I historically never tolerated well. So, on the one hand I can understand avoiding it. I did so for years. On the other hand, I also see no reason to particularly vilify it. I try to be aware of the properties of different foods and their impact on the body and try to make conscious, judicious choices about what I should eat to move my body forward in the healing process or support it during some acute crisis. Some things are, generally speaking, best avoided most of the time…but not always. And as I heal, how my body reacts to things changes.
As for hydration: I found that getting enough good quality, high brine sea salt with the right healthy fats (and combined with the right carbs) has made me far less prone to dehydration. Oils don’t evaporate the way water does. Salt changes the properties of water. I suspect I have more actual fat on me now than I ever have, even though I have lost several dress sizes. I think I was so large due to a form of edema rather than fat per se (and this was partly corroborated by a medical exam where the doctor announced I had edema more than halfway up my lower leg).
Peace.
May 23rd, 2011 by Michele
I put a lot of effort into working on the health of my blood/circulatory system. The origins of this weren’t even consciously about working on my blood. Many years ago, before I even had a diagnosis, I suffered terribly from restless leg syndrome. This frequently interfered with my ability to get to sleep. At some point while living in Southern California (the last place we lived prior to where I was diagnosed, so maybe a couple of years or so before my diagnosis), I read an article that indicated that at least for some people, supplementing with iron and B-complex could clear up their problems with restless leg syndrome. I began taking B-complex in the evening when my feet bothered me too much sleep. If that didn’t calm it down sufficiently, I would follow up with iron about thirty minutes later. If it still wasn’t cleared up, I would repeat the process. I started with B-complex rather than iron because B-complex is a water-soluble vitamin, so it is difficult to overdose on it. If you get too much, your body just dumps the excess in your urine. It doesn’t build up in your system. But iron is a mineral and can build up to toxic levels. So I was more conservative about taking iron supplements than about taking B-complex.
Looking back on it, I was treating my iron and B-complex deficiencies symptomatically. But I really didn’t think of it that way at the time. I kind of did, but I certainly didn’t make any conscious connection between my restless leg syndrome and my long-standing history of anemia. Both iron and B-complex deficiencies can individually lead to anemia and I clearly was deficient in both. I didn’t fully realize how severely anemic I had been until I began having regular monthly periods at age 40. My periods had always been very irregular and had tended to be a light flow and tended towards pink rather than red. In the last five years or so, they have been very regular, much heavier, and much darker in color. Irregular periods “run in the family” (and CF is genetic, so it also tends to “run in the family”) and it had always been my “normal”, so I just didn’t realize how much this was an indicator of my anemia until it improved, much to my astonishment.
I don’t think it was just the iron and B-complex supplements which led to that but those supplements were certainly a factor. I also began working on PH balance and a number of other things prior to my periods improving so much. I have always read that PH balance is about the PH balance of your blood: That your blood only tolerates a very narrow PH range and you will die if it gets too out of whack. I was working on my PH balance to help my lung inflammation and gut issues, so wasn’t specifically trying to correct my blood initially but was aware that was the idea behind the whole PH balance thing. Then I saw a show that talked about how bony fish were able to develop lungs and start leaving the water because the calcium in their bones made it possible to regulate the PH balance of their blood. This was the beginning of the idea for me that a) excess acidity is the reason that people with Cystic Fibrosis are so prone to osteoporosis and b) I needed to work on the PH balance of my tissues, not just the fluids in my body. I began thinking in terms of my blood as being like a river running through a toxic landscape: No matter how perfect and pristine the water at the beginning, it would continue to leach bad stuff out of the land it ran through and wind up toxic unless the landscape were cleaned up. Thus began my quest to eat more lettuce and other alkaline foods to try to work on making my solid tissues less acid rather than just my blood/fluids.
Then at some point, I did some reading on altitude sickness. Even before you start suffering altitude sickness, just going to a high enough elevation causes you to urinate more. Why? Because when the atmosphere thins your body stops being able to breathe out as much waste as it usually does. The wastes have to go somewhere and ultimately you urinate them out. How does the body know to do this? Basically wastes get built up in the bloodstream and when they exceed a certain level the body starts dumping it via the kidneys. This was a big Aha! moment for me and a clue that the lung problems typical of CF and the gut problems typical of CF directly interacted and the medium by which they interact is the blood. Doctors seem to view the gut issues and lung issues as somehow separate. I never really did see it that way but also didn’t have any idea of how they were related other than the fact that whatever was wrong with my cells impacted all of them, not just some of them.
I don’t really know how to convey how important this was and how big a part it played in my recovery. I do know that people with CF suffer malabsorption so it’s tough to get enough nutrients in them generally. And I do know that aggressive supplementation to treat deficiencies was a big part of what I did to get myself better. Blood health became a focus somewhere along the way as a key piece of the puzzle. In recent months, my hands and feet are going through dramatic changes and in the past three or four years my fingernails have improved enormously. I always had crappy fingernails until a few years ago. My fingernails continue to improve. It is well known in the CF community that lung health impacts fingertip health and clues to poor lung health include cyanosis and clubbing. But what is the connection there? The connection is the blood. Even if your lungs can get enough oxygen, if the blood cannot carry enough oxygen, you have an issue. Fingertip health and hand and feet issues are about circulatory problems of various sorts — it’s about the health of your blood and the system that carries it.
Because blood is so critical to life and healthy functioning, the body makes it a high priority and diverts resources to it, starving other systems if necessary (like stripping the bones of calcium). If you want to get your health back, you would be wise to also make it a high priority and work on getting enough of the right resources to keep your blood healthy without stripping other systems.
May 21st, 2011 by Michele
I gave up my car over three years ago. Both my kids get car sick and neither ever expressed interest in learning to drive or getting a driver’s license. In the months prior to giving up the car, my son with CF hardly ever went anywhere. He was largely housebound and would go with us to EB Games once a month. When push came to shove financially and we had a family conference about it and agreed to give up the car, we began walking to the grocery store and such prior to giving it up. We did this to give ourselves a transition period and start working out some of the logistics. So prior to giving up the car, I began spending less time in it.
The first two weeks after I began spending less time in the car, my son with CF slept up to 18 hours a day and had diarrhea. The off-gassing from plastics and such in the car that he was exposed to second-hand from my exposure to the car was apparently something that had a very negative impact on him. We have both done substantially better without a car and we have no plans to ever own a car again. I have been in a gas station only twice in the time since I gave up my car and both times I was acutely aware of how dreadful it made me feel. I have come to believe that people with CF are more negatively impacted by petrochemicals than normal people. My kids get out more than they used and do not hesitate to walk several miles to go shopping. In fact in recent weeks, my son with CF and I have gone every Saturday morning for a 7 to 8 mile long walk to push our healing process and getting around on foot is becoming a great deal less restrictive than it was initially.
Then in the Summer of 2009, someone on an email list asked about a bug with a name that I had not heard before. Out of curiosity, I googled it. One of the things that kept coming up was articles on soil remediation. This bug was being used by environmental scientists to clean up petrochemical spills. There were other “CF bugs” also named in some of these articles on soil remediation — bugs that are generally frightening to get for people with CF and which normal people seem to not typically get. These also tend to be things doctors don’t know how to really effectively treat. And I have to wonder why bugs that think petrochemicals are yummy also think people with CF are yummy. It makes me think that people with CF probably tend to hold on to petrochemicals better than average and that some of the infections we get are because we basically become toxic sludge-pools. Since concluding that, I make more effort to avoid or limit various types of exposures to petrochemicals, including limiting eating out of styrofoam containers, exposures to soft plastics, and so on.
Below are some of the links I kept when I did my initial googling. I have never had any of these infections so I haven’t looked at this info since I first googled it up. I just know my kids and I are doing a great deal better with operating on the assumption that petrochemicals are especially bad news if you have any CF genes (and my youngest son is a carrier, so I think he is impacted, though not as seriously as I or my oldest son).
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Achromobacter
Medical:
http://stanford.wellsphere.com/wellpage/treatments-for-achromobacter
http://www.springerlink.com/content/jv781272111884rr/ (lists antibiotics that it is sensitive to)
http://www.netwellness.com/question.cfm/33867.htm
Calcium uptake: http://www3.interscience.wiley.com/journal/119664426/abstract?CRETRY=1&SRETRY=0
Remediation:
Remediation of PAH-Contaminated Soil Using Achromobacter sp.
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Surfactant biodegradation
By Robert Donald Swisher
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Chromate reduction by resting cells of Achromobacter sp. Ch-1 under aerobic conditions
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Inoculation of plant growth promoting bacterium Achromobacter xylosoxidans strain Ax10 for the improvement of copper phytoextraction by Brassica juncea
Effect of flagella expression on adhesion of Achromobacter piechaudii to chalk surfaces
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http://www.bionewsonline.com/1/1/achromobacter.htm
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http://www.wikigenes.org/e/mesh/e/22642.html
Bioremediation of petroleum contaminated sites
By Eve Riser-Roberts
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PA ( and Achromobacter both get mentioned in this book.
Another “CF bug” — one that typically is harmless to healthy people but causes serious infections in people who are immunocompromised — that gets used for bioremediation is Acinetobacter. I wrote an email with some links about that once. But this post is already quite long, so I plan to stop here for now.
May 8th, 2011 by Michele
I was bedridden from January 2001 to April 2001. I was diagnosed with “atypical CF” in May 2001. In the summer of 2002, I attended a two month intensive educational program at UC-Riverside, not far from Los Angeles. The smog did not agree with me and I ended up on eight prescription drugs to get me through the last half of the program. After that, I began 22 months of ugly drug withdrawal from all the prescription medication. The steroids were the hardest to get off. My first attempt that fall landed me back on antibiotics. It was midterms (so probably November 2002) and I typically ended up in the ER/on antibiotics at midterms and finals anyway. I happened to have a regularly scheduled check-up with my CF doctor and I told him that I could feel I was going south and if he didn’t give me something, I would be in the ER within a day or two. So he wrote me a prescription for zithromax. My second attempt landed me in the ER, back on antibiotics and bedridden again for about a week. I believe this was late January or early February 2003.
During this time, I began talking with people online about my medical issues. Somewhere in there, one friend (former registered nurse who studied a bunch of alternative medicine stuff as well) told me I needed to taper off of steroids, something no doctor had ever told me, and emphasized how really hard on the body steroids were. I had been on steroids before on more than one occasion but never so weak and sick, so I had never before found them impossible to get off of. A different friend, who had severe asthma, suggested I take guaifenesin to support my lungs. So when I ended up in the ER with that second attempt to get off steroids, I asked for a prescription for guaifenesin (which you may know by the brand name “Mucinex”). Armed with prescription doses of gauifenesin and the knowledge that I needed to taper off the steroids, I finally got off them that spring.
The following fall, November 2003, was the last time I was on antibiotics. My entire life, I typically ended up on antibiotics at least twice a year, usually in the November-December time frame and then again in the January-February time frame. In bad years, I ended up on antibiotics many more times than that but as a minimum I ended up on antibiotics at those times. That fall, about the time I was coming off my antibiotics, a friend shipped me an early Christmas present: Hand-packed capsules of pure guaifenesin with no dyes or other additives. I think it was something like a six week supply and when I was running out, she mailed me the remaining powder. The powder is insanely, tortuously bitter but I took it anyway with tiny measuring spoons (usually 1/8 or 1/4 teaspoon, later sometimes taking 1/16 teaspoon). Taking pure guaifenesin with no additives of any sort is part of how I made it through my first winter without antibiotics. I was also routinely taking hot salt water baths and doing other things to help support my body, but that was a key turning point for me.
I later bought Mucinex, though it is pricey and full of dyes and other additives that bother me. Then someone suggested I go with an off-brand to avoid the dyes. They recommended VS Pharmacy’s brand of guaifenesin, called CVS Pharmacy Chest Congestion Relief. I later found another brand I liked better at K-mart called Mucus Relief. (I once did a cost comparison of these three brands. It is posted on my CF and Money page — though I haven’t taken any of these since June 2009, so the prices are undoubtedly out of date.) As long as I had a brand without blue dyes or time-release formulations and took an appropriate dose, I did well on gauifenesin and had no noticeable side-effects (I did have side effects on brands that had blue dye and other additives). Now that I am off it, I am aware of feeling differently, so I am sure there were side effects, but at the time I didn’t particularly notice them and whatever impact they were having in that regard, it was better than being so sick. I’m glad to be drug free but I could not have gotten here without taking guaifenesin for about six years. It helped me get off steroids and later helped me get through my first winter without antibiotics. If there is one drug I am a big fan of, it would be this one.
In discussing this with someone, they remarked they wished they could get hold of guaifenesin with no additives. I did a little googling and tripped across this: http://www.herbaladvantage.com/. They sell pure guaifenesin powder in quarter pound, half pound, or pound amounts. If you buy empty “00″ capsules and hand-pack your own, you can have the ideal situation I had that one winter when a friend did that for me. If, like me, you can’t deal with hand-packing your own, then you can take it with tiny little measuring spoons, just realize it’s pretty vile-tasting stuff. Make sure you have a drink and snack available to try to get the taste out of your mouth as quickly as possible. I personally always felt that putting up with minor, short-term suffering of that sort was better than putting up with the side effects of the drugs that come with blue dyes and other additives. Buying the pure powder is probably more cost effective on a per dose basis than anything else and I found that when I was very ill taking the pure form without additives was just tolerated a whole lot better. When the body is very weak and overwhelmed, every little extra burden can be that straw that breaks the camel’s back. I was always looking for every little advantage I could get in the fight against CF. For me, taking pure guaifenesin with no additives was a big turning point and helped me make some major milestones in the journey towards wellness.
