michiganjan

Just got home from a long day. The cancer had spread. It is in 2 places in his liver as well as the esophogus and he has swollen lymph glands around the aorta. so no surgery to remove the tumor.

going to the oncologist on Monday, will start treatment soon.

some time soon i am going to ask for a prayer vigil for a certain time and plan it out maybe for one of his treatment times and I want everyone to pray at the same time, whenever it is set for.

For those who posted and said you don't pray, I don't care if it is a prayer to God, just some kind of a prayer. I think that kind works, too. Please take the time to do it. I need it now. His name is Jeff and he is absolutely devestated right now that his cancer has spread.

Michigan Jan

who is also devastated

My husband was diagnosed yesterday with cancer of the esophogus. We are going this morning for a CAT scan to see if the cancer has spread. It if has spread he will see an oncologist for radioation and chemo. If it has not spread he should see a surgeon to have it removed. Please pray that it has not spread! Please be with me in spirit today as I go with him for his test.

Yesterday was just awful. The gastro who did the scope told us that he has the cancer and even though he did the biopsy, he already knows what it is. The question is where else it might be.

Please Start praying now and keep it up through 11 am Eastern time this morning. I will post later on the findings. If I know someone else is doing this, I will not feel so alone.

Michigan Jan

I agree with Geneva about the cool vest. I have one. The cooling neck wraps don't do a thing for me. After about 5 minutes they get warm from the heat given off by my neck. However, I do like a dishtowl with ice rolled up in it and then wet the towel and wear it around my neck in addition to the cool vest on my body. Those two things together do help. I also agree with Geneva that if you get a cool vest, get one with a zipper. Mine is white. I would definitely get a light color and not a dark one. I keep my vest in the fridge all the time, just pop it out and wear it when needed, then put it back and it is always ready.

Michigan Jan

Ernie,

I am thinking of you. My prayers and thoughts are with you.

Michigan Jan

This is a really tough one.

I manage to stay around 160 pounds or a little less and I am 5' 8". The top weight for my height on the charts is 163, so my weight is normal and I look a normal weight.

I have really worked to stay where I am. To lose is very difficult. I do not eat sugar or much fat. My diet is super healthy. And I do exercise. Still, if I eat much more than 1000 calories a day, I gain.

And guess what? I am 57. And I can tell you that we need less and less calories to maintain the same weight as we age. So get ready to cut down on food amounts as the years roll by! Such good news!

I also must eat or get low blood sugar. So I have some really low calorie things I eat throughout the day. I find that when I do this, I really don't want to eat a regualr size meal in the evening. But I want something after dinner in the middle of the evening to hold my blood sugar until morning.

Good Luck everyone! This is a hard one

Michigan Jan

Whenever I sit, my feet turn purple. The when I stand up and walk, they go back to a healthy looking pink. If I sit down and bend over and dangle my hands to the floor, they too, will turn purple. However when I type they stay normal color.

I do not get a squeezing sensation that someone mentioned. Just the purple color. I get the purple color year round and my feet can get cold year round.

However, the purple color does not correspond to feeling cold. It happens whenever I sit or dangle my hands down, even if I am warm.

Michigan Jan

I have a Medic Alert bracelet. It says:

multi drug sensitivities and allergies disautonomia call for list.

There is my ID# and the phone number to call. They have all my info on file.

Michigan Jan

I have been quiet because I have been too busy working to post.

For several years I was able to do part-time office work. It was sitting down, mostly phone work and computer and short hours. However, in addition to POTS, I have multiple chemical sensitivities, and I only lasted until the business I happened to be working for redecorated, or renovated. Since these things happen regularly in the real world, I decided I should work at home.

I have been able to work at home on the computer. For the past few years, I have worked as a freelance editor and writer specializing in Language Arts materials for Teacher and Student books at the elementary level. This has been a good job because I can write at midnight if I want, or take a nap at any time.

I discovered I was good at writing "readers." I define a reader as a text written for a specific grade level and a text that introduces new vocabulary and defines the new words in the context of the text. A reader is written in a manner that facilitates the reader to use reading skills, such as compare and contrast, summarize, etc. (KEEP READING--THERE IS A POINT TO THIS I PROMISE)

I love to do jigsaw puzzles--it is one thing I can do with the POTS. Last year, in March, I thought someone should put readers on jigsaw puzzles in order to make reading a hands-on activity. We all get ideas that make us think . . . "Someone ought to do that," and then just forget about it. This time it was different somehow. and I decided to actually do it. I found out how to get jigsaw puzzles manufactured. I wrote the stories and paid student artists to do the puzzle art. I talked a local school into testing the puzzles for me. I call my puzzles: A Story Piece by Piece. They have numbers on the backs so the puzzles can be worked a third at a time, so the story can be read in order with a beginning, middle, and end.

Just yesterday, I sent the computer files for my first 6 puzzle designs to a printer. The printer will take the finished prints to the factory. The factory will make the puzzles, and the warehouse (who will also fill orders) will pick them up from the factory. There is now a huge hole in my husband's retirement savings (he is already retired) and I am on the brink of having over 5,000 jigsaw puzzles in a warehouse with rent due every month for each skid. So, while they are being manufactured, I will now be writing a brochure and making a website.

HERE IS THE POINT.

I have wondered and wondered how I am able to do this when I could not do much at all with POTS for years and years. I think part of the answer is that it is something that I can primarily do on the computer, at home. I am very good at sitting.

But the BIGGIE answer is PASSION. For some reason I have a passion for creating these reading puzzles and getting them out there. And it is that passion that has made it doable with the POTS, multiple chemicial sensitivities, and chronic fatigue. I am almost 58 years old and it has taken until now for me to feel passionate enough about one of my own ideas to jump in and take a chance. It feels wonderful. If this venture turns out to be a complete failure, I will still feel happy for having tried.

I wish everyone of you a huge dose of passion.

Michigan Jan

I think this is a good question for us. Since we sit and lie down so very well, as opposed to standing and walking, we should have good movies to watch during all that sitting and lying. I hope others post so that I can find some good video titles to rent.

My all time favorites:

Pretty Woman with Julia Roberts and Richard Gere

Master and Comander . . . this gives a wonderful historical picture of life on a Brittish navy ship. Loved the characters, too.

Pirates of the Carribean with Johnny Depp. Some spooky scenes with humor--very entertaining.

Notting Hill . . . this one was a hoot with Julia Roberts

Mystic Pizza... just fun with good characters

(I think I really like Julie Roberts flicks!)

Moonstruck with Cher. If you have never seen this one, rent it.

My big fat Greek Wedding. Or course everyone has seen it. My son married a Greek girl. We had our own real-life version of this movie--only without Windex.

Roxanne with Steve Martin and Daryl Hannah. Steve Martin was wonderful.

Mystery Alaska. This is a hockey movie set in Alaska. It is wonderful even if you don't like sports. Characters are well developed and likable.

Okay, I will quit. There are other good ones out there. Someone else please post a list so I can discover them.

Michigan Jan

I am 57, soon to be 58. My POTS has graually worsened with age. I think my younger self had a better ability to adjust than my older self. My stamina and length of time on my feet is definitely less than before and that is in spite of maintaining a good diet, steady healthy weight and regular exercise program and weight training program for many years.

Sorry to say, but my "standing time" without bad symptoms has been dropping as my age increases.

Michigan Jan

I am thinking of both of you. Keep us posted.

Michigan Jan

Jenn, Gena, and Amy,

Congrats to all of you! You are all doing wonderfully well.

Rah Rah Ree!

Keep it sugar free!

Rah Rah Ras!

Kick sugar in the ___!

Michigan Jan

Miriam,

I am sending healing thoughts your way. Whatever you decide to do will be okay. There is no right or wrong choice here.

Thinking ofyou

Michigan Jan

Miriam,

Thank you for the suggestion. I have not tried stretching. But I will try it. How might stretching help?

At first I was worried that I might have blockages in my legs . . . I have heard of claudication. However, all 3 docs I asked simply said they didn't know what it is and none of them suggested tests, so I figured my symptoms are not like that of the pain caused by the blockage.

Sure wish I understood it, though.

Michigan Jan

Hi everyone. A few years ago, I used to walk 1 hour per day at only 2 mph (very slow). I noticed that after 50 minutes both legs began to have shooting sensations that felt cold. Like a cold stream suddenly shooting up and down the legs. They started in the lower legs but if I kept walking, they spread to the upper legs. When I quit walking, they stopped. The sensations are not painful, just strangly odd feeling and can get extremely bothersome if I continue.

Due to my POTS, my walking time has decreased since then. Now I can walk about 40 minutes at most and sometimes the "shooters: will start near the end of the 40 minutes on the treadmill.

Yesterday, I walked only about 20 minutes outside. As I walked up a hill, the "shooters" started. Sometimes they will start in a store if I have been on my feet for awhile.

In the past I have asked a cardiologist, my primary care Dr., and Dr. Grubb what they are. All three replied they did not know and they did not recommend any tests.

Any ideas? I have heard of caudication of the legs that causes pain on walking. This is not painful, but it is very bothersome and a very strange sensation and definitely NOT normal.

Any thoughts are appreciated.

Michigan Jan

Amy,

I understand the cravings. I have had them, too. About 20 years ago I quit sugar cold turkey. By this I mean anything with sucrose or dextrose, honey, etc. but I still eat fruit and milk. It was the hardest thing I ever did. I kept trying to assuage my cravings with a banana, orange, or anything naturally sweet. I could eat a truckload of fruit and when I was done I still craved a cookie.

It was withdrawal and my life was **** for 2 weeks. I did not break down once, though and after 2 weeks it got better. I don't know of any way to do it successfully except to quit cold turkey and it is ****.

However, the other side of the coin is that after you get over the cravings, you can live quite well without it and weight (at least for me) normalized on its own.

Only thing is, though, even after 20 years, if I eat one thing with sugar in it, I immediately have the craving for more. So I just don't go there except . . . I can handle a spoonful of ice cream once in a while without wanting a second spoonful. But I would never eat a bowlful.

Good luck!

Michigan Jan

Are your supply ducts up high? I was surprised to read that your husband would have to stand on a ladder. There are two kinds of vents--the returns that carry the air back to the HVAC unit and the supplies that carry the warm or cooled air into the rooms. If you change your filters and have good filters, then the return air should be cleaned before going back out to the supply vents.

I cleaned inside the supply vents, which in my case are in the floor. Food, dust, dead bugs, and other junk can fall into them in my case. And that dirt in the supply vents is not filtered out. It can just sit there and blow around.

Anyway, you want to clean the ones that blow the heated or cooled air into the rooms, not the ones that carry the old air back to the central unit.

Good luck

Michigan Jan

Geneva,

This is Michigan Jan. I am replying because I saw the references to my previous posts in this thread.

I am not sure if I can help because there are so many components in a HVAC system and it seems to me that you are already on the right track. I get an AC check every year before turning it on. Ours is central. Part of that check is cleaning the coils inside the plenum. Did you have this done when you had your inspection?

Awhile ago I was having trouble, too and was thinking of the duct cleaning. I did not do it--I decided it would stir up too much dust. And I was warned by sensitive friends who had it done to avoid at all costs the santizing process as it left odors.

However, I did clean inside each of the supply vents myself. The ones on my main floor go down only a few inches and then turn to join the main run across the ceiling of the basement. So I was able to reach to the "turn" area which is where stuff that falls into the supply vent collects. Then it blows around whenever the fan runs. I was amazed at what had fallen in there over the years. I did begin to have less symptoms after cleaning them out. If you do decide to stick you hand down a supply vent, be careful because there's all kinds of sharp things in there, including the pointy ends of the screws that go through the duct and sharp sheet metal edges, and sometimes I made contact with the edge of a baffle and that is sharp too.

Anyway, you did not mention a problem with the heat, only the AC. And I am assuming the supply ducts are the same.

Do you have your matress and box springs encased? I have mine encased in barrier encasings and my pillows, too. Every week the sheets, pillowcases, blanket and even the bedspread is washed in hot water. While I am washing them, I do a through dusting of the bedroom fro the top down. And I wear a mask while I do it.

This has also helped.

Please let us know what else you find out. You are on the right track.

Michigan Jan

I am glad so many are exercising. Tearose . . . way to go!

I am disturbed, though at my own exercise plan as I read what others are doing. I have gone to a gym regularly for the last 4 for weight training. I have also walked and rode my exercycle. However, I can't do an much now as I could before. My tolerance is decreasing not increasing. I used to be able to walk for 60 minutes a few years ago. Now if I do 40 Ihave overdone it. and Even 20 is a struggle. Mind you, I have been walking and riding the exercycle regularly for at least 4 years now. And I am regular with it. My weight is normal but it is a real trial. I gain weight eating more than 1000 cal a day. Losing a few pounds is really hard as I have to go below that. Still I manage the eating better than the exercise. I can tell myself not to eat something and then follow through. But when I walk for 30 minutes, I know I won't be doing anything else that same day like going to the store and possibly not anything exercisey the next day either.

I have tried starting slow and increasing slowly, but I just can't get to above 20 minutes without feeling like crap and without having very much tiredness the next day.

Michigan Jan

Happy New Year to everyone on the DINET forum!

May all your resolutions come true. The best to you all in 2005. May there be no POT holes.

Michigan Jan

I had the test once. It was a bit painful but not overly so and it did not take long and when it was over, so was the pain. I would have one again without hesitation if it were needed.

Michigan Jan

What drugs are you taking? Paxil, Celexa, and Lexapro can all cause weight gain.

Years ago when I took Paxil I gained about 2 pounds a week. When I went to 1000 calories a day I continued to gain at least a pound a week. It did not matter how much exercise I got, or how little I ate, I gained and gained until I quit the paxil.

Michigan Jan

Tearose,

I hope you are feeling better. I had a high fever--over 104 a few years ago. I felt a bit hot and took my temperature and YIPES! it was 104. I brought it down quite quickly in a tub of tepid water and Tylenol.

I agree with Beverly when she said not to be hard on yourself. People who don't have dysautonomia get sick, too. You may have gotten sick even if you had been taking it easy.

I just had a session with a chronic illness counselor who gave me a lecture on being hard on myself. I am going to do better in this regard. It is not your fault that you got sick. Actually, we shouldn't worry about the concept of "fault." when we get sick. It is irrelevant.

I wish you a wonderful holiday. It can be that, even if you spend some of it in bed.

Michigan Jan

You can have a mammogram sitting down. I had my last one that way. This is how they do them for women in wheelchairs. I don't use a wheelchair, but I was concerned about what if I fainted and there I would be held by the boob in the machine! So I said, I want mine sitting down and sure enough, they could do it.

Michigan Jan

Merrill,

I have had the contrast and no problems with it and I am very sensitive to just about everything.

About having an MRI. The first one I had, they asked me if I was claustrophobic and I laughed and said no--I could be perfectly comfortable shut up in a little closet. I made it through part of the test and then had them pull me out. I did go back in and finish but swore I would never do it again. I had an extreme panic reaction to all that noise. It is really loud in there and you must lie perfectly still. After I let them push me back in to finish, my husband held my hand. He had to reach way up the machine and his back must have hurt the next day.

The second MRI--as soon as they started to push me in, my body just scrambled down the "bed" in order to stay out of there. I just couldn't help it. I had to reschedule.

Here's how I coped and it finally made it through the second one. I posted on the forum, and asked people to tell me what I should think about to get through it. I got several messages in which people shared their favorite things to think about. One thought about getting a fabulous log home and how they would decorate it. Another suggested going over and over the words to a specific song. People shared their favorte fantasies and sent words of encouragement.

I printed out all the messages and read and reread them until I had everyone's well wishes and fantasies memorized. I took the printed sheets to the hospital and right into the MRI machine with me. Then when I began to experience signs of panic I visualized that log house and decorated it, and went to all the imaginary places and sang all the songs and held on to the papers. It worked!

The technicians had never had anyone ask to take paper in with them before but I told them I had to have my forum messages and paper is okay. I wore earplugs. They gave me some, but they were foam and I am allergic to the foam, but I had my own wax ones and those were okay to use. Xanax might help also. If it works for you to relax you, then try it.

Here's my fantasy--you can take it with you. Imagine decorating your house for Christmas with a silver theme. Imagine a 12 ft tree and it has huge silver bows all over it and each bow has long silver streamers that flow down the tree like silver streams. The bows are mde of three kinds of silver ribbon. The inside part of the bows is from white ribbon with silver edging and the outter bow is of wide woven mettalic threads. The streamers are like liquid silver. The tree has red and silver and white ornaments. Under the tree is a Lionel Christmas train that goes round and round a white tree skirt. There is an entire Christmas village under the tree on that snowy skirt inside the train track. Next to the tree is a fireplace dripping in silver with red cardinals perched here and there. Then just go on and decorate the rest of the place. Every time that machine rumbles, add some lights here or there. How about three tall glass vases of different shapes holding willow branches and the branches hung with a hundred tiny silver stars and white doves perched in the branches.

Good luck!

Michigan Jan