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.
Friday, May 20, 2011
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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