Maybe it's because I have Behcet's Disease.
Maybe it's because I lost 12" of colon to diverticulitis.
Maybe it's because I take Colchocine.
Maybe because, after a tooth extraction, I took exactly four Vicodan tablets, as prescribed, for pain.
Whatever it is, I have just been really miserable with sharp lower abdominal pain for four days, which was only, at last, relieved by Kobucha probiotic tea.
People with Behcet's should be very aware of digestive tract health, and do everything to maintain the right bugs in the right combinations. I lost 3 pounds this week because I stopped eating. It hurt to eat. Anything. Soup filled me up after a few teaspoon and caused sharp pains. Motrin helped the pain. But the real problem was an imbalance in the bugs in the intestines.
Eat yogurt at least twice a week. Drink a few ounces of pro biotic tea, or take a pro biotic tablet a few times every week.
I definitely am going to pay more attention to this part of my body after this miserable week. It's not enough to just eat lots of fruit, vegetables and fiber. Like the pro biotics, be pro-active and do routine maintenance on maintaining your digestive health, even when you feel good.
Wednesday, November 2, 2011
Thursday, October 20, 2011
Climate Affects Behcet's Disease
I live in a northern state, where the days are pretty short for 3/4 of the year, the temperature is freezing, if we're lucky, for about six months, and precipation ranges from cold rain to snow and sleet, six months of the year. Sound pleasant? It is also next to a Great Lake, which keeps things damp and the wind slamming in off icy cold waters.
I should move.
Climate does play an important part in how manageable my Behcet's symptoms can be.
All late spring through early autumn, I enjoyed relatively good health. Not perfect, not all the time, but I was otherwise healthy and my Behcet's symptoms were minimal.
It's late fall. It's cold. I caught a cold. I therefore had another bout with mouth ulcers. As I've stated before, when I get sick, the Behcet's gears up for a good kick.
Something I had forgotten about was that I now am experiencing Reynaud's phenomenon as part of the change in climate. My fingers and hands suffer the most, with numbing, tingling, and generally annoying pain that is really more discomfort than pain. My feet also get cold, but I can keep them in wool socks, which helps a great deal. Another thing to put on my shopping list when I see my rheumatologist. I had forgotten about this particular annoyance until today, when it returned in the morning, for no particular reason that I can discern. It does go away after awhile, and it helps to hold a cup of something hot.
I also went to the eye doctor because my vision has taken a steep decline rather rapidly. He thinks I only need new glasses, for which I am very thankful. We'll know more when I have a visual field test, which my insurance company doesn't pay for unless a certain amount of time has passed. I hate insurance companies. In fact, today, I hate all corporations. Just having one of those days, I guess. This country is run by a bunch of fat corporate pigs who have destroyed all semblance of a good life for the working class. It bothers me more than a little that a bunch of executives hold sway over my health care. In a perfect world, these pigs will ultimately suffer painful, slow and agonizing demises, for which there will be no insurance coverage. No sympathy, either, at least not from me.
At any rate, I am going to climb on the band wagon of moving to Nevada, or Florida, or Belize. My husband likes these ideas, he just doesn't act on them quickly. He still is working. I've given up, having discovered that my health is more important than my finances. Hell, I'm ready to walk away from a mortgage and everything that goes with it, and settle for a simpler, more healthy lifestyle, meaning a whole lot less creature comforts, but a whole lot more satisfaction. Can't take it with me.
Meanwhile, I urge Behcet's sufferers to take extra care in cold, damp and inclement weather. Dress properly. Eating properly is more important in the colder months, when we become more sedentary than we are when its warm outside. A diet rich in vegetables and fruit (I don't really like fruit, so try to make up for it in vegetables and tomato juice) and plenty of whole grains really works wonders.
Halloween candy is my nemesis, and I wish I could be in a coma for the next two weeks and not see it everywhere. I thought I could satisfy my sweet tooth (which I broke in half on Monday - and can't see the dentist till my mouth ulcers are healed) with a trip to a very high end chocolate shoppe. (adding a "p" and an "e" to "shop" automatically gives them the right to charge exorbitant prices). I spent $30 on a bag of chocolate non-pareils and a box of smaller solid chocolates. Well, obviously, I'm not doing well on giving up certain creature comforts. At any rate, chocolate is better than those orange and green pumpkin sugar blobs, but I think maybe they contributed to my current symptoms, as I ate two handfuls of them.
I just ate a cucumber. Not satisfying. Not sweet. No all that great......but better for me than the chocolate, which I promptly shipped off to a friend in New York because I had buyer's remorse.
I am trying to be responsible with my diet. I just wish it wasn't Halloween. I wish I didn't have this disease, either, but since I do, I think I should be entrepreneurial. Does anyone want to join me in my kitchen where we will attempt to concoct the sweetest, best candy anyone ever tasted that actually heals Behcet's ulcers? We'll probably kill ourselves trying, but hey, there are worse ways to die.
I should move.
Climate does play an important part in how manageable my Behcet's symptoms can be.
All late spring through early autumn, I enjoyed relatively good health. Not perfect, not all the time, but I was otherwise healthy and my Behcet's symptoms were minimal.
It's late fall. It's cold. I caught a cold. I therefore had another bout with mouth ulcers. As I've stated before, when I get sick, the Behcet's gears up for a good kick.
Something I had forgotten about was that I now am experiencing Reynaud's phenomenon as part of the change in climate. My fingers and hands suffer the most, with numbing, tingling, and generally annoying pain that is really more discomfort than pain. My feet also get cold, but I can keep them in wool socks, which helps a great deal. Another thing to put on my shopping list when I see my rheumatologist. I had forgotten about this particular annoyance until today, when it returned in the morning, for no particular reason that I can discern. It does go away after awhile, and it helps to hold a cup of something hot.
I also went to the eye doctor because my vision has taken a steep decline rather rapidly. He thinks I only need new glasses, for which I am very thankful. We'll know more when I have a visual field test, which my insurance company doesn't pay for unless a certain amount of time has passed. I hate insurance companies. In fact, today, I hate all corporations. Just having one of those days, I guess. This country is run by a bunch of fat corporate pigs who have destroyed all semblance of a good life for the working class. It bothers me more than a little that a bunch of executives hold sway over my health care. In a perfect world, these pigs will ultimately suffer painful, slow and agonizing demises, for which there will be no insurance coverage. No sympathy, either, at least not from me.
At any rate, I am going to climb on the band wagon of moving to Nevada, or Florida, or Belize. My husband likes these ideas, he just doesn't act on them quickly. He still is working. I've given up, having discovered that my health is more important than my finances. Hell, I'm ready to walk away from a mortgage and everything that goes with it, and settle for a simpler, more healthy lifestyle, meaning a whole lot less creature comforts, but a whole lot more satisfaction. Can't take it with me.
Meanwhile, I urge Behcet's sufferers to take extra care in cold, damp and inclement weather. Dress properly. Eating properly is more important in the colder months, when we become more sedentary than we are when its warm outside. A diet rich in vegetables and fruit (I don't really like fruit, so try to make up for it in vegetables and tomato juice) and plenty of whole grains really works wonders.
Halloween candy is my nemesis, and I wish I could be in a coma for the next two weeks and not see it everywhere. I thought I could satisfy my sweet tooth (which I broke in half on Monday - and can't see the dentist till my mouth ulcers are healed) with a trip to a very high end chocolate shoppe. (adding a "p" and an "e" to "shop" automatically gives them the right to charge exorbitant prices). I spent $30 on a bag of chocolate non-pareils and a box of smaller solid chocolates. Well, obviously, I'm not doing well on giving up certain creature comforts. At any rate, chocolate is better than those orange and green pumpkin sugar blobs, but I think maybe they contributed to my current symptoms, as I ate two handfuls of them.
I just ate a cucumber. Not satisfying. Not sweet. No all that great......but better for me than the chocolate, which I promptly shipped off to a friend in New York because I had buyer's remorse.
I am trying to be responsible with my diet. I just wish it wasn't Halloween. I wish I didn't have this disease, either, but since I do, I think I should be entrepreneurial. Does anyone want to join me in my kitchen where we will attempt to concoct the sweetest, best candy anyone ever tasted that actually heals Behcet's ulcers? We'll probably kill ourselves trying, but hey, there are worse ways to die.
Wednesday, October 19, 2011
Getting Sick and Having Behcet's Disease
I have a very bad cold. Hence, my mouth is full of ulcers because my health is otherwise compromised. Add to this, I broke a tooth and can't go to the dentist until the ulcers are healed. Thank God for steroid mouth rinse. I think I can safely get into my dentist's office by the end of the week.
When you have Behcet's Disease, and your health becomes compromised some other way, it is almost certain your Behcet's Disease will flare. At least, that's been my experience.
It is important to eat right, get plenty of rest, drink tons of water, and avoid sick people if you suffer Behcet's Disease. It's not really funny how touchy our health becomes when we have this disease. A simple thing like a cold virus can virtually flatten us. I spent all day in bed on Monday, too weak to participate in life. I was also in a great deal of pain, because coughing, with mouth ulcers, hurts. A lot.
At any rate, people who have been diagnosed with Behcet's Disease should take extra care to keep themselves healthy, and keep unhealthy people away from them. And, in my particular case, I pushed myself to help a friend paint a huge room, spending three days balancing on a ladder. This did me no good and exhausted me, despite the fact that I limited my involvement to about four hours per day. The room is beautiful. Me, not so much.
I get very resentful sometimes with this disease. I am disgusted that my life is dictated by this disease. But I can't change that. I can change how I live, which means understanding what my limitations are. That has been my biggest challenge, because I always want to do more, go more places, have more fun. Alas, it just isn't possible anymore.
When you have Behcet's Disease, and your health becomes compromised some other way, it is almost certain your Behcet's Disease will flare. At least, that's been my experience.
It is important to eat right, get plenty of rest, drink tons of water, and avoid sick people if you suffer Behcet's Disease. It's not really funny how touchy our health becomes when we have this disease. A simple thing like a cold virus can virtually flatten us. I spent all day in bed on Monday, too weak to participate in life. I was also in a great deal of pain, because coughing, with mouth ulcers, hurts. A lot.
At any rate, people who have been diagnosed with Behcet's Disease should take extra care to keep themselves healthy, and keep unhealthy people away from them. And, in my particular case, I pushed myself to help a friend paint a huge room, spending three days balancing on a ladder. This did me no good and exhausted me, despite the fact that I limited my involvement to about four hours per day. The room is beautiful. Me, not so much.
I get very resentful sometimes with this disease. I am disgusted that my life is dictated by this disease. But I can't change that. I can change how I live, which means understanding what my limitations are. That has been my biggest challenge, because I always want to do more, go more places, have more fun. Alas, it just isn't possible anymore.
Thursday, September 22, 2011
Smokers Message
Smoking alleviates pain and somewhat inhibits mouth ulcers in people with Behcet's Disease.
Unfortunately, it is a terribly unhappy option for those of us who'd like to live long enough to see our grandkids grow up.
I am working on not smoking and it has been difficult. I crave sugar, but am learning to reach for cucumbers instead. I just ran out of steroid mouth rinse, and feel very close to a real freak out and total panic. On the other hand, I know enough to not be my own worst enemy by eating or drinking stuff that is bad for my system. Most Behcet's sufferers have probably figured out what works and what doesn't regarding nutrition. If you haven't, please do so. I also refilled my pain medication.
Is it actually possible to give up cigarettes without completely going off the deep end with Behcet's symptoms?
Stay tuned. Going to exercise now. What a bore. I'd take my dog for a walk but a woman and her 3 year old daughter just got held up at gun point in my fairly normal middle class neighborhood. My political blog continues to take most of my time.
Unfortunately, it is a terribly unhappy option for those of us who'd like to live long enough to see our grandkids grow up.
I am working on not smoking and it has been difficult. I crave sugar, but am learning to reach for cucumbers instead. I just ran out of steroid mouth rinse, and feel very close to a real freak out and total panic. On the other hand, I know enough to not be my own worst enemy by eating or drinking stuff that is bad for my system. Most Behcet's sufferers have probably figured out what works and what doesn't regarding nutrition. If you haven't, please do so. I also refilled my pain medication.
Is it actually possible to give up cigarettes without completely going off the deep end with Behcet's symptoms?
Stay tuned. Going to exercise now. What a bore. I'd take my dog for a walk but a woman and her 3 year old daughter just got held up at gun point in my fairly normal middle class neighborhood. My political blog continues to take most of my time.
Monday, September 19, 2011
Fall - Bad Time of Year for Me!
It's fall, and all the Halloween candy has hit the store shelves. This is very bad for me. I'm somewhat addicted to candy, the cheaper, more unhealthy it is, the better I like it. This is very bad for me, since I eat the candy and then have to wait for the mouth ulcers to appear. It would be better if I smoked, because smoking does retard the development of mouth ulcers in my system. But smoking is something I really want to NOT do.
I suppose I could exercise the same self-control for not eating the candy that I'm exercising for not smoking the cigarettes, but then, well, crap, why don't I just drop dead and be done with this completely boring life.
Anyhow. Fellow candy addicts and Behcet's sufferers, you are not alone. I put on my skeleton face and hit the candy bucket. I just don't care.
I suppose I could exercise the same self-control for not eating the candy that I'm exercising for not smoking the cigarettes, but then, well, crap, why don't I just drop dead and be done with this completely boring life.
Anyhow. Fellow candy addicts and Behcet's sufferers, you are not alone. I put on my skeleton face and hit the candy bucket. I just don't care.
Thursday, September 15, 2011
Baking Soda Toothpaste
Recently had a flair with my Behcet's, and made an interesting accidental discovery.
Toothpaste containing baking soda helped soothe and heal a particularly nasty mouth ulcer. I didn't use the steroid rinse, as the toothpaste made a huge difference. Can't say this will work for everyone, but switch to a toothpaste with baking soda, and see what happens.
Toothpaste containing baking soda helped soothe and heal a particularly nasty mouth ulcer. I didn't use the steroid rinse, as the toothpaste made a huge difference. Can't say this will work for everyone, but switch to a toothpaste with baking soda, and see what happens.
Wednesday, August 3, 2011
Skittles and Behcet's Disease
If you have Behcet's Disease, don't eat Skittles. Don't eat M&M's. Don't eat all that yummy candy that has dye in it. You will suffer!
I just came back from a road trip, where a bag of Skittles was in easy reach of my right hand. So, after shoveling several handfuls of Skittles into my mouth, I now have lots of mouth ulcers and am down on my knees thanking the auto-immune Gods for the miracle of steroid mouth rinse.
Sorry I haven't been blogging much about Behcet's lately. I live in Wisconsin, which is a political cesspool right now, and I spend most of my time discussing which politicians need to get recalled.
Let me just tell Behcet's sufferers, be gentle with your immune system, which is completely out of whack. Don't necessarily eat food that is supposed to be good for your immune system. You don't want to overstimulate the system, which just responds negatively to over stimulation. Pineapple is very very good for us. Nuts are very very good for us, especially almonds. And if you can, eat ORGANIC food. There are many good things to eat that are 100% organic, like salty snacks and even chocolate cookies. Newman-O's are an excellent substitute for Oreos.
I can't speak for everyone, but I find good, old-fashioned Motrin an excellent pain reliever for the pain of mouth ulcers, when you don't want to take prescription pain meds. I practically live on Motrin.
Hang in there! We can live relatively pain free lives even with Behcet's, but we have to rethink our approach to our bodies, and definitely stop being our own worst enemy.
I just came back from a road trip, where a bag of Skittles was in easy reach of my right hand. So, after shoveling several handfuls of Skittles into my mouth, I now have lots of mouth ulcers and am down on my knees thanking the auto-immune Gods for the miracle of steroid mouth rinse.
Sorry I haven't been blogging much about Behcet's lately. I live in Wisconsin, which is a political cesspool right now, and I spend most of my time discussing which politicians need to get recalled.
Let me just tell Behcet's sufferers, be gentle with your immune system, which is completely out of whack. Don't necessarily eat food that is supposed to be good for your immune system. You don't want to overstimulate the system, which just responds negatively to over stimulation. Pineapple is very very good for us. Nuts are very very good for us, especially almonds. And if you can, eat ORGANIC food. There are many good things to eat that are 100% organic, like salty snacks and even chocolate cookies. Newman-O's are an excellent substitute for Oreos.
I can't speak for everyone, but I find good, old-fashioned Motrin an excellent pain reliever for the pain of mouth ulcers, when you don't want to take prescription pain meds. I practically live on Motrin.
Hang in there! We can live relatively pain free lives even with Behcet's, but we have to rethink our approach to our bodies, and definitely stop being our own worst enemy.
Friday, May 20, 2011
Fatigue in Behcet's Disease
Probably the worst thing, after the horrendous pain of ulcers, is the fatigue that comes with Behcet's. There really aren't any vitamins, magic teas, herbs or drinks of any kind that actually help. You're just tired some days, bone-tired, weary tired. No matter how much you've slept.
I was reading about the fatigue in "The Essential Guide to Behcet's Disease" I am thankful that most days, I do have plenty of energy for a person my age (59). Its the days when I don't have any energy that I worry about. For example, last year, I was cooking Thanksgiving dinner for sixteen people. I woke up and knew it was going to be terribly difficult for me to get through it all, despite having done much of the cooking and prepping ahead of time. Somehow, dinner got on the table, but if I didn't have a truly terrific family, I would have never made it through the clean up. My daughter is so wonderful, making sure everything is neat and tidy and shooing me out of the kitchen. So are my sisters-in-law.
Today, I got up and knew it was going to be that kind of day. Took me all kinds of time to get going. I met a friend for lunch, and driving home, the fatigue just settled over me like a shroud. So after writing this, I'm going to take a nap. Ordinarily, naps refresh people, or so I'm told. I've never been a napper. Lately, though, the fatigue just wins and I have to close my eyes. I wish I woke up refreshed. I wake up cranky and more tired than ever, and feeling sorry for myself.
One of the remedies for fatigue recommended for Behcet's are amphetamines: dexedrine, ritalin, adderal. I never thought I would want to take an amphetamine......took my share back in the sixties when speed was a street drug. I guess I remember the jittery, sleepless part of it, and not so much the fun I had dancing at the blues clubs. At any rate, I try to take as few medications as possible these days, and my rheumatologist just adjusted my colchicine upward, so I'm taking more of that.
I am going to ask him about something to get me through those days when my legs and arms feel like lumps of sodden clay. Of course, he'll probably think I'm a drug addict, but nothing could be further from the truth. If your quality of life suffers, you suffer. I have been laying around far too much these days and I need to get up and get moving. Not everyday! I mean, I'm retired, and what's the point of retiring if you can't blow off a day or three? However, I'm married to jumpin' jack flash, who just loves to go places, do things, see people and enjoy life to the ultimate degree. So, I can drag my ass after him, beg off from the social calendar, or get something that keeps me fully engaged in life. I'm choosing the chemical cure. I hope my doctor will agree.
When a person has a chronic illness, they are not the only ones affected. Family members also have to work around your health issues, and I don't blame them for being somewhat resentful. My husband never makes me feel like I'm the whiny burden I sometimes am, and I so appreciate him for that. But it would be nice to be as excited as he is when something fun is happening and he wants to do it.
I was reading about the fatigue in "The Essential Guide to Behcet's Disease" I am thankful that most days, I do have plenty of energy for a person my age (59). Its the days when I don't have any energy that I worry about. For example, last year, I was cooking Thanksgiving dinner for sixteen people. I woke up and knew it was going to be terribly difficult for me to get through it all, despite having done much of the cooking and prepping ahead of time. Somehow, dinner got on the table, but if I didn't have a truly terrific family, I would have never made it through the clean up. My daughter is so wonderful, making sure everything is neat and tidy and shooing me out of the kitchen. So are my sisters-in-law.
Today, I got up and knew it was going to be that kind of day. Took me all kinds of time to get going. I met a friend for lunch, and driving home, the fatigue just settled over me like a shroud. So after writing this, I'm going to take a nap. Ordinarily, naps refresh people, or so I'm told. I've never been a napper. Lately, though, the fatigue just wins and I have to close my eyes. I wish I woke up refreshed. I wake up cranky and more tired than ever, and feeling sorry for myself.
One of the remedies for fatigue recommended for Behcet's are amphetamines: dexedrine, ritalin, adderal. I never thought I would want to take an amphetamine......took my share back in the sixties when speed was a street drug. I guess I remember the jittery, sleepless part of it, and not so much the fun I had dancing at the blues clubs. At any rate, I try to take as few medications as possible these days, and my rheumatologist just adjusted my colchicine upward, so I'm taking more of that.
I am going to ask him about something to get me through those days when my legs and arms feel like lumps of sodden clay. Of course, he'll probably think I'm a drug addict, but nothing could be further from the truth. If your quality of life suffers, you suffer. I have been laying around far too much these days and I need to get up and get moving. Not everyday! I mean, I'm retired, and what's the point of retiring if you can't blow off a day or three? However, I'm married to jumpin' jack flash, who just loves to go places, do things, see people and enjoy life to the ultimate degree. So, I can drag my ass after him, beg off from the social calendar, or get something that keeps me fully engaged in life. I'm choosing the chemical cure. I hope my doctor will agree.
When a person has a chronic illness, they are not the only ones affected. Family members also have to work around your health issues, and I don't blame them for being somewhat resentful. My husband never makes me feel like I'm the whiny burden I sometimes am, and I so appreciate him for that. But it would be nice to be as excited as he is when something fun is happening and he wants to do it.
Wednesday, May 18, 2011
Diet for Controlling Mouth Ulcers in Behcet's Disease
If it is at all possible, for all intents and purposes, you must eat only organic food.
I am completely crippled by food additives, food dyes, food chemicals, pesticides, MSG, growth hormone, in short, by just about everything you find in an average item for sale in an average grocery store. When I ingest these things that we were never intended to ingest (but we're talking about a multi-billion dollar food industry - and what do they care?), I suffer.
The worst offender seems to be food dyes, found in everything. Seriously. Everything. Unless you're eating 100% organic, there is food dye involved. For me, if I don't consume things with food dyes, I don't get as many painful mouth ulcers. Its an adequate trade off. Next is anything chemically engineered, like corn sugar syrup, found in a surprising amount of items. Chemicals must not take the place of food, i.e., Sweet and Low will make me sick, sugar, less so. But sugar seems to also bother me, so I limit my intake.
I really have eliminated so many things from my diet that in the last year, I've lost twenty-five pounds. That's not a bad thing. Behcet's Disease can attack the digestive tract. I lost twelve inches of my colon, so I know what I'm talking about.
Experiment. Experiment constantly. Eliminate. Even the things you love. Who knew that the thing I would miss the very most is the bag of penny candy my husband used to surprise me with.
For two weeks I recommend the following:
1. Buy only organic products. You will be surprised at how many things aren't healthy at a health food store for Behcet's sufferers, so become a label reader. You will also be surprised at what a great variety of junk food is available for us that falls under the category 100% organic. And it is actually good!
2. Drink water. Drink water like you're dying of thirst in the desert. Flush all of the chemicals, additives, dyes that have built up in your body. Think of water as a cure for Behcet's (it's not, but I want you to think of it as such).
3. Get a little exercise. Go for a walk. I know about the fatigue and the pain, but actually, start small. Walk around the block. Walk around two blocks. Force yourself. I got a dog. She forces me.
4. Don't eat in restaurants. I think in the city where I live, there are probably two hundred great restaurants. I can eat in about six of them. So don't eat in restaurants for two weeks and see if you feel better. All food industries use items that are really not good for Behcet's sufferers. And don't east FAST FOOD. It's terribly full of terrible things.
5. Substitute good things for bad. I know Oreo cookies will wreak havoc with me. Organic Newman O's will not! I used to love red licorice. (Still do - but avoid it --- red dye!). Buy organic licorice and learn to love the taste. It's actually pretty good.
6. Use Common Sense. I know that the box of cookies, cupcake, candy bar will satisfy deep sugar cravings and make me happy for a minute; but I also know that in the next few days, I will suffer miserable pain from mouth ulcers, and it will be days before I'll even feel like talking, much less eating.
7. Believe that diet plays an important role in relieving symptoms. There is very little research on it, but I can tell you that its true. My husband is a great, and completely sympathetic cook. I have been much healthier since I've changed my diet.
8. If you don't cook, don't fret. Buy a vegetable steamer. It's easy to wash off a few beans, brussel sprouts, carrots, celery, (all organic of course) and throw them in a steamer. Add an inch of water to a pan, put in the steamer, cover, and steam for 15 minutes. You'll have a nice meal. Anyone can bake a potato. Anyone can pan fry a steak, or a hamburger. As long as it's organic, you'll be feeling much better very shortly.
9. There are organic versions of just about everything. Read the labels. Look for the ones that say 100% organic - they are the best. If it doesn't say that, read the label and make note of the chemicals. If a food item bothers you, eliminate it altogether.
10. Learn how to recognize the things that are going to trigger your pain and misery. Unfortunately for me, its just about everything.....and my willpower sometimes isn't that great. So I eat a gummy bear. I said "a" gummy bear. It's not going to kill me, I can generally get away with it without triggering symptoms and I know I have to stop at one. Don't beat yourself up if you stuff your face with the worst things in the world because you just can't help it. Your disease will remind you and you will come to find that eating a carrot or an apple may not be the most satisfying thing, but those painful ulcers will stay the hell away.
I am completely crippled by food additives, food dyes, food chemicals, pesticides, MSG, growth hormone, in short, by just about everything you find in an average item for sale in an average grocery store. When I ingest these things that we were never intended to ingest (but we're talking about a multi-billion dollar food industry - and what do they care?), I suffer.
The worst offender seems to be food dyes, found in everything. Seriously. Everything. Unless you're eating 100% organic, there is food dye involved. For me, if I don't consume things with food dyes, I don't get as many painful mouth ulcers. Its an adequate trade off. Next is anything chemically engineered, like corn sugar syrup, found in a surprising amount of items. Chemicals must not take the place of food, i.e., Sweet and Low will make me sick, sugar, less so. But sugar seems to also bother me, so I limit my intake.
I really have eliminated so many things from my diet that in the last year, I've lost twenty-five pounds. That's not a bad thing. Behcet's Disease can attack the digestive tract. I lost twelve inches of my colon, so I know what I'm talking about.
Experiment. Experiment constantly. Eliminate. Even the things you love. Who knew that the thing I would miss the very most is the bag of penny candy my husband used to surprise me with.
For two weeks I recommend the following:
1. Buy only organic products. You will be surprised at how many things aren't healthy at a health food store for Behcet's sufferers, so become a label reader. You will also be surprised at what a great variety of junk food is available for us that falls under the category 100% organic. And it is actually good!
2. Drink water. Drink water like you're dying of thirst in the desert. Flush all of the chemicals, additives, dyes that have built up in your body. Think of water as a cure for Behcet's (it's not, but I want you to think of it as such).
3. Get a little exercise. Go for a walk. I know about the fatigue and the pain, but actually, start small. Walk around the block. Walk around two blocks. Force yourself. I got a dog. She forces me.
4. Don't eat in restaurants. I think in the city where I live, there are probably two hundred great restaurants. I can eat in about six of them. So don't eat in restaurants for two weeks and see if you feel better. All food industries use items that are really not good for Behcet's sufferers. And don't east FAST FOOD. It's terribly full of terrible things.
5. Substitute good things for bad. I know Oreo cookies will wreak havoc with me. Organic Newman O's will not! I used to love red licorice. (Still do - but avoid it --- red dye!). Buy organic licorice and learn to love the taste. It's actually pretty good.
6. Use Common Sense. I know that the box of cookies, cupcake, candy bar will satisfy deep sugar cravings and make me happy for a minute; but I also know that in the next few days, I will suffer miserable pain from mouth ulcers, and it will be days before I'll even feel like talking, much less eating.
7. Believe that diet plays an important role in relieving symptoms. There is very little research on it, but I can tell you that its true. My husband is a great, and completely sympathetic cook. I have been much healthier since I've changed my diet.
8. If you don't cook, don't fret. Buy a vegetable steamer. It's easy to wash off a few beans, brussel sprouts, carrots, celery, (all organic of course) and throw them in a steamer. Add an inch of water to a pan, put in the steamer, cover, and steam for 15 minutes. You'll have a nice meal. Anyone can bake a potato. Anyone can pan fry a steak, or a hamburger. As long as it's organic, you'll be feeling much better very shortly.
9. There are organic versions of just about everything. Read the labels. Look for the ones that say 100% organic - they are the best. If it doesn't say that, read the label and make note of the chemicals. If a food item bothers you, eliminate it altogether.
10. Learn how to recognize the things that are going to trigger your pain and misery. Unfortunately for me, its just about everything.....and my willpower sometimes isn't that great. So I eat a gummy bear. I said "a" gummy bear. It's not going to kill me, I can generally get away with it without triggering symptoms and I know I have to stop at one. Don't beat yourself up if you stuff your face with the worst things in the world because you just can't help it. Your disease will remind you and you will come to find that eating a carrot or an apple may not be the most satisfying thing, but those painful ulcers will stay the hell away.
Introducing Behcet's Disease - The Guest No One Invites
There is surprisingly small amounts of information available regarding Behcet's Disease, an autoimmune disorder whereby the immune system attacks the body. This is because there are a very small number of people who have this disease.
I was diagnosed with Behcet's Disease four years ago. I had suffered with symptoms for two years prior to being diagnosed, mainly because I had an internist who refused to believe I had anything as rare as this condition. There isn't one simple test for the disease, it is diagnosed by a combination of symptoms which can occur all at once, or singularly.
In this first post, I would like to tell anyone suffering from, or interacting with a person with Behcet's Disease that they purchase the book "Essential Guide to Behcet's Disease", written and complied by Joanne Zeis. It is the best information I have found yet. It is lacking in dietary information, which I have found plays a huge role in my own health and my autoimmune responses. I intend to state, here, what works for me. I don't know if it will work for anyone else.
WHAT IS BEHCET'S?
BEHCET'S DISEASE IS A RARE AND CHRONIC MULTISYSTEM DISORDER THAT CAUSES THE INFLAMMATION OF BLOOD VESSELS ANYWHERE IN THE BODY. THIS INFLAMMATION IS KNOWN AS VASCULITIS. FOR THE MOST PART, THE LOCATION OF THE INFLAMMATION(S) IS WHAT DICTATES A PATIENT'S SYMPTOMS. THE MOST COMMON SYMPTOMS INCLUDE APHTHOUS ULCERS OF THE MOUTH AND GENITALS, ALONG WITH UVEITIS (A FORM OF EYE INFLAMMATION).
Behcet's Disease typically starts when patients are in their 20s and 30s, but it has been seen in all ages from infants to the elderly.
Behcet's Disease is a long-term, unpredictable, and cyclical disease that comes and goes in "flares" of varying intensities. There may be symptom-free periods of weeks or months that are interrupted by flares lasting a few days, weeks, or months. in this cyclical sense, Behcet's is much like multiple sclerosis or lupus. Some people can be hospitalized at times with the more serious complications of Behcet's Disease, but there are also occasional reports of people who go into permanent remission. As you can see, it's all very uncertain.
I was diagnosed with Behcet's Disease four years ago. I had suffered with symptoms for two years prior to being diagnosed, mainly because I had an internist who refused to believe I had anything as rare as this condition. There isn't one simple test for the disease, it is diagnosed by a combination of symptoms which can occur all at once, or singularly.
In this first post, I would like to tell anyone suffering from, or interacting with a person with Behcet's Disease that they purchase the book "Essential Guide to Behcet's Disease", written and complied by Joanne Zeis. It is the best information I have found yet. It is lacking in dietary information, which I have found plays a huge role in my own health and my autoimmune responses. I intend to state, here, what works for me. I don't know if it will work for anyone else.
WHAT IS BEHCET'S?
BEHCET'S DISEASE IS A RARE AND CHRONIC MULTISYSTEM DISORDER THAT CAUSES THE INFLAMMATION OF BLOOD VESSELS ANYWHERE IN THE BODY. THIS INFLAMMATION IS KNOWN AS VASCULITIS. FOR THE MOST PART, THE LOCATION OF THE INFLAMMATION(S) IS WHAT DICTATES A PATIENT'S SYMPTOMS. THE MOST COMMON SYMPTOMS INCLUDE APHTHOUS ULCERS OF THE MOUTH AND GENITALS, ALONG WITH UVEITIS (A FORM OF EYE INFLAMMATION).
Behcet's Disease typically starts when patients are in their 20s and 30s, but it has been seen in all ages from infants to the elderly.
Behcet's Disease is a long-term, unpredictable, and cyclical disease that comes and goes in "flares" of varying intensities. There may be symptom-free periods of weeks or months that are interrupted by flares lasting a few days, weeks, or months. in this cyclical sense, Behcet's is much like multiple sclerosis or lupus. Some people can be hospitalized at times with the more serious complications of Behcet's Disease, but there are also occasional reports of people who go into permanent remission. As you can see, it's all very uncertain.
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