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.
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