The Vote is In!
Schuller’s Book Store and Cafe in Okemos MI. Bookstore and cafe has very good food. Can meet there because we can look up things if needed about different topics.
If you are new to this site — please email me at pam.groth@gmail.com if you are interested in coming to the support group meeting Okemos MI. We have designated driver for those that cannot drive.
Interesting statement don’t you think?
I recently had a conversation with someone about MS and how hard it is to figure out what causes our attacks. Is it food, is it not resting and getting proper 8 hours of sleep, is it stress? What could be the cause of our attacks when they do happen.
My opinion I think it is food and not enough rest. And please remember ….. these are just my opinions, I am not a doctor, this information is based on doing self-tests on myself and others. I know I feel like CRAP when I do not take care of myself. I push so hard to get things done, and I forget about myself. It is as if I am trying to prove something to someone, but in reality there is nothing to prove. The work will be there tomorrow. The dirty house will be there tomorrow, if I really need help, I will ask someone to help me I am not that proud not to ask for help.
Recently worked with someone about certain foods that are affecting her ability to function properly. I kind of got a little upset because the person said “I want to prove to someone that I cannot eat cheese, it makes me very weak, now that person saw it and I proved to them I cannot have it”.
Grrrrrrrrrrrrrrrrrrrrrrrrrrrr – this is about you coping, and focusing on living everyday, not THEM!
What is to prove? Why put your body in such a state of turmoil because you want to prove to someone that because you have MS you cannot do or eat something? The only thing that crossed my mind was after a month and half of eating the correct foods with minor setbacks, the person went out and ate something that would cause the body to become very weak and not be able to walk. I don’t get that? I know I know, I have done this too, but not to prove a point.
I am not superwoman, there are things that I cannot do. Sometimes I forget that. It is normal, because we have gone through a good part of our lives doing things for ourselves. I forgot that the other day. I fell, big time. I was carrying something into the house because I was being stupid. I should have waited for my sister to get home and I did not, I fell and put a dent in the laundry room wall. Good Going Pam!! So stupid, so I can relate to this person’s decision about eating something that causes the body to weaken and not able to walk. We have to rememeber this — People have to accept that with or without an explaination. We should not feel that we have to explain ourselves to anyone. Living with this disease is hard, why make it worse.
IT IS SO IMPORTANT TO PUT OURSELVES FIRST….. THEN EVERYTHING ELSE WILL FALL INTO PLACE
I have not written in my blog for a little while. I have been very busy with school and now I have a job. My hours are pretty filled. I visited a fellow friend this week on Tuesday who has MS like I do, and she was struggling that day. She had some Gluten Free bread and was not able to walk very well. I checked the ingredients and found that the gluten free bread has yeast as one of the ingredients. Yeast is one of the 5 common foods that often trigger MS attacks in some people. So far, she is not able to eat any dairy or yeast at all.
Interesting tidbit of information. My sister went to a health seminar recently and discovered that the lecturer was a doctor along with 3 other doctors who have developed these vitamins and minerals and also believe that Omega Fatty Acids can help repair the damaged mylein sheath in people who have MS. I will be researching this because it sounds too good to be true!! If that was the case, why haven’t all the neurologists that we have seen tell us this???? Is it a fluke????? Well, I am no sure at the moment but will keep you posted. Interesting tidbit — he said that people who suffer from high blood pressure is missing an important mineral in their body. I wonder on a different note — if he means this — people who have MS have some sort of mineral and vitamin deficiency?? Interesting concept.
I love eggs. We are always told by our doctors that we have to be careful with eggs because it causes the cholesterol levels to shoot up. This lecturer claims that eggs are so important for people who have MS because it helps repair the damaged Mylein Sheath? Interesting!!! I am so confused right now, some books say eggs are not the proper food to eat, and this man is saying to eat 4 eggs a day. Can you imagine? Eggs produce a good cholesterol. It is the good cholesterol that is needed to repair damaged things in our bodies from toxins that are digested daily. Will keep reading!!! I AM NOT ENTIRELY CONVINCED.
Will be heading to the Madonna Health Fair this weekend in Livonia, MI – I am hoping to gather some more info about different things as my mind is craving more knowledge.
After helping a fellow MS friend with her problems with MS, I learned some things about myself. It is scarey to see someone go through certain motions like not being able to walk without the aid of a walker, and if we wanted to go somewhere, it was a chore to load up the car with the wheelchair and walker, and help her to the car. I realized that this can happen to me. I would have to depend on someone else to help me go places and get around and do things. I got really scared. Such an eye-opener for me.
The emotions that ran through my body was high. I did not realize that how important it is to listen to your body and get rest as much as you can because if I don’t do these things I can land up like her or even worse. This scares me – I have so many plans for my life. I am scared that I will not be able to do the things that I treasure the most like – going to the store to buy food, cook, decorate cakes, sew quilts, paint, even write. These are the things I take for granted every day I am alive. I need to STOP! and sit back and enjoy every bit of time I have because it can all be taken away in the next minute. Learning to appreciate and enjoy what I can do and even just sitting outside and absorping everything makes all the difference in the world. The plans I once had a long time ago before I was diagnosed with this stupid-ass disease, I planned to have a family, meet someone, fall in love, get married, have children. I think I would be an awesome mom and a great caregiver for my family. It is in me! the nurturing part.
When I got diangosed with MS – everything changed. My life changed. I stopped living. I stopped planning things. Everything I did was a ho de hum kind of thing. The normal things we do everyday I did them listlessly. It did not mean anything.
NOW — I have so much I want to do, there are things I want to accomplish – #1 – finish college!!! get my Bachelor’s degree – 1year left WHOO HOO — YEAH!!!!, #2 – write a book about my life living with deaf parents in the god-forsaken farm with no exposure to people and culture and what I have gone through with my MS, #3 – it would be nice to meet someone – to have a great conversation and share things with and lastly # 4 – get the business off the ground so that my family and I will live without the worry of being fired or laid off from their jobs and not having to work for someone else and abide by their stupid stupid stupid rules. Speaking of rules, I can remember the most recent job I had with a construction company – I was told by one of the owners of the company to keep my pain and personal problems at home. Everyone goes through their own pain and even I (meaning the owner) have pain I go through everyday. I am thinking what an ASSHOLE!!!! I got let go anyway, so what the hell (more in my upcoming book — ya never know it can happen!)
Anyway, on a more positive note, these are my goals, it would be so cool to see the happen!
After a week and a half of taking care of a fellow MS friend, I cannot help but wonder if MS attacks are caused by different foods. BY NO MEANS, AM I A DOCTOR!! AND THIS IS NOT A CURE FOR MS AND ALWAYS CHECK WITH YOUR DOCTOR ABOUT THINGS YOU WANT TO TRY, but it seems to be a pattern that food can play key roles in how we feel everyday. After having our 2nd group meeting and speaking with the people who showed up, they displayed the same opinions as I do. Everyone has “DIFFERENT” opinions and feelings about food.
With Lesa, we noticed that she had more problems with certain foods such as any type of dairy product, pork, yeast, and possibly eggs and gluten. This is extremely interesting and an interesting observation to me, since most of the healthy eating books about MS explain that these food allergies wreak the body’s abilities to walk and function normally.
Myra indicated in the meeting that her issues were related to anything that has sugar in it. Fruit is a natural sugar her doctor and she feels that some fruits are OK, but not to overdo it. Myra follows a very strict diet, she eat only organic fruits, vegetables, poultry, eggs, and nuts. She showed surprise when the book “The MS Recovery Diet” suggested that eggs might cause attacks because she eats eggs 3 times a week, this is written on the Direct-MS website
www.direct-ms.org/recommendations.html
This website explains this same theory that these types of foods dairy, eggs, animal fats, sugars, gluten are suggested that have the potential to cause autoimmune reactions. MS is an autoimmune disease, and these foods may cause problems with certain people. This does not mean Myra cannot eat eggs, it just means it is something she should keep track of and see if there is a problem. Every person has different attacks with different foods. Some suffer the same signs and with some there are no food allergies at all.
I noticed with my body, I cannot eat beef, peanuts, and some pork products, I become extremely tired and cannot function the next couple of days, I am very listless and feel like CRAP! Dairy (I mean just organic milk), eggs do not seem to bother me, although that is the number 1 problem with most people. I do not eat a lot of sugar anyway because I have Type II Diabetes – which was caused from years of Predisone and Soluable Medisol and of course the number one problem being overweight. Losing weight for me is a work in progress. Sometimes I think that losing weight is such a joke for me because it is so hard for me to exercise. My legs become numb and all tingling like they are going to fall asleep making it so painful to exercise.
I shared some great insights from information that I have collected from various book sources and from the health food stores. I had a friend who is a health food nut and she gave me one of her little brochures that she gets from her health food store and I found a very interesting article about the herb Cilantro. Cilantro to me tastes like soap. It is a very strong-tasting herb and it is used in mostly some Asian soups and Mexican dishes like salsa. Ok, there is a big theory floating out there about mercury and silver fillings that we have in our mouths for cavities. The silver that is used to fill cavaties causes our bodies to have dangerous toxins that cause MS an exacerbation. AGAIN, I AM NOT A DOCTOR BY ANY MEANS THESE ARE JUST OBSERVATIONS I HAVE LEARNED FROM OTHER PEOPLE. By removing these silver fillings and replacing them with porcelain products the MS attacks were less to almost non-existent to some. Lesa has about 7 or 8 fillings in her mouth and one broke six months ago, and she told me her MS attacks started around that time frame. Vicky said that her mother who has MS had the same problem until her fillings were removed and there was a huge difference in the way her mom felt. SO….. interesting little tidbit of information. Anyway, the herb Cilantro helps remove toxins caused from aluminum, lead, mercury, silver etc., from the body. There is a Cilantro pesto sauce recipe on my PK Cakes website if you are interested in this sort of theory.
Learning about how food affects the body is extremely interesting to me. I enjoy learning about all kinds of food and how they affect the way we feel everyday. Very motivated now to keep on eating healthy and promoting healthier eating habits. It is better to be safe than to keep our eating style that can affect our recovery. I have to learn to accept that I have many limitations to eating and doing normal activities everyday and those things are very hard for me to do. It is hard to slow down when I know there is so much I want and need to do. I have to stop and listen to what is going on in my body because I suffer when I am Not resting, Eating a well-balanced diet, Exercising (when I can), Getting enough sunshine for vitamin D (one of the causes of MS, the lack of), and Respecting my body. These are the 5 things I have to implement in my life. I do believe that if I follow those things, I will have better control of my MS situations that pop up everyday.
Hi, Pam! Yes, the support group was great! I couldn’t believe that I talked a lot about it to my husband yesterday and last Sat. I felt so happy. A lot of info is really worth it! Thank you! 🙂 yesterday I didn’t feel good, but not bad. I felt lightheaded and a part of Lhermitte’s Sign in the morning plus fatigue. After a nap, I felt better, but I got a headache then. I thought I would have a bad day due to Lhermitte’s Sign today, but not. My legs are getting heavy due to motion sickness or sugar or both. I will see my dr tmw and ask some questions. Myra
This is so great! I wasn’t sure the support group was going to work, but when I got Myra’s e-mail tonight I was thrilled to death. I am so happy that Myra is happy about the group support. It is wonderful that we can share our stories and I encourage everyone to comment on my blog website. it is so important that we get our stories out there, because who knows we can help someone else. Myra’s testimonial has renewed my faith in my support group and sharing stories with everyone. I was not sure if I was getting anywhere but it looks like I am. It’s a great feeling!
More about Lhermitte’s Sign, check out the link on the right side of my blog. Click on the link and you will see information come up about this – pretty interesting reading. There is actually a name for these pain in the neck tingling feelings that I have everyday and suffer from it and do not get any sleep because of it. It would be so great to have one day of no tingling – how cool would that be?!?!
Myra Vicky Lori Lesa 09-13-08
Today we had our 2nd MS support group meeting here in my home. The reason the meeting was in my home is because Lesa is staying her to get better from her MS attacks she has been suffering for a few months. We are working on changing her diet and so far we are finding some foods are causing problems for her. We are starting to see a pattern which means what we are doing is helping Lesa realize that food is a huge key into staying healthy and MS attack free.
The topic of today’s meeting was about what kind of foods people who have MS should eat. One of the things is a low fat diet. Six things should be eliminated from the diet is – Gluten, Dairy and Animal Fat, Eggs, Legumes – such as peanuts, soy and Sugar.
Today everyone bought a dish to share. Healthy healthy food. WOW!
Thanks to Myra, she brought healthy organic veggies to make a salad and hard boiled eggs, Vicky and Lori brought organic fruit and rice pudding. I made an excellent fresh tomato dressing and avocado cilantro dressing to go over the salad and I made hummus and served with celery, carrots and organic rice soy crackers – which we later figured out that the crackers had sugar in them. CRAP! Trader Joe’s sells the rice crackers without the sugar so I will get those next time.
I was reading this book “The MS Recovery Diet” and I came across one of the stories about different people who suffer from MS. One of the people that I felt I could associate with was named Carol. She said that she found that unlike many people who have MS are “heat-sensitive”, she was “cold-sensitive”. I suffer from this! AMAZING!!!! Finally I found someone who has this problem as I do. I hate it when the weather changes, from the wonderful summer time, warm weather, sunshiney days to the fall crisp nights and then on to winter that wonderful white stuff we see on the ground. Yech! My body is changing now. I am in pain all the time now especially at night. I feel like I have ice water running through my veins and my butt feels like I am sitting on 2 bags of ice. My left arm and hand is ice cold and very painful, I am hoping I will be able to sleep tonight.
Now I know that I am not nuts and that I am “cold-sensitive”. I react terribly to cold weather like some fellow MS people react to hot weather. Hot summer days warm me up, I feel so much better like my body has completely thawed out! When I am hot, I just turn on the air conditioning and run ceiling fans and cover up when I need to and I am fine. Interesting story, am so glad I found it because now I know that I am not alone in this.
Lesa and Pam 9-10-08
This picture was taken today. Lesa has come to stay with me for a little while. She arrived at my home with Vicky one of her friends on Saturday 9-6-08 barely able to walk and was really stressed out. I think that being stressed out and food diet had a lot to do with her MS attack. Today is Wednesday, and Lesa is walking and signing so much better. I thought it was the coolest thing to see her walk up 5 steps today without using her hands to move her legs up each step. Every day is a good day.
I changed Lesa’s diet completely. Sunday I did not serve anything with Gluten or Dairy in it basically it was not planned, just happened that way. On Monday, I served breakfast, gave Lesa gluten free granola cereal mix with organic skim milk and when she was done eating, she became very stiff and was not walking hardly at all. I thought oh boy. She said that she felt her legs were swollen but they did not look swollen. I told Lesa that I think she is having an allergy reaction to dairy and that she needed to stop drinking and eating anything with dairy in it.
Today I served breakfast, gluten free granola cereal with rice milk and Lesa was fine. I eliminated all dairy from her diet and she is eating no gluten. I noticed such a big difference in her already. I still believe that food allergies can cause MS attacks. As I have said this before, it is so important to keep a journal of everything that you eat, and how you are feeling by the end of the day. Very crucial.
Lesa admitted to me that she does eat a very poor junk-food diet. She realizes now that staying with me for a little while, a big difference in the way she is feeling. I think that eliminating stress and the wrong foods can make all the difference in the world.
Another thing I told her that she needs to think about herself. No more worrying about what other people are doing and what other people think. I think it is so important to eliminate all the negativity and stress and this helps release tension and makes the body relax. When someone is so stressed out it causes the body to tense up and things do not function right. I think she is realizing this now.
Hopefully Lesa will be on the path to healing and by staying with me for a couple of weeks might just change things. I am learning about this myself. I think helping her is helping me to realize how important taking care of yourself is especially when you have MS.
I often wonder if diet is a huge key into preventing MS attacks. The more research that I do about MS and diet, I am beginning to think that food allergies have a lot to do with how the body performs. One of the things I have been doing heavy research on is gluten free foods. I am almost convinced that gluten is one of the many problems that causes MS to react so badily in our bodies. I have eaten less gluten foods for a couple of weeks now and have noticed a huge improvement in the tingling of my legs and feet. Today I went off the diet a little bit and had coffee with cream and ate a piece of cake, the tingling in my hands, feet and legs is running 100 miles an hour. The way I am feeling right now has me convinced that I need to quit drinking coffee and eating food with gluten and sugar in them.
When I drank rice milk or almond milk I did not feel exhausted as I do today. I had cream in my coffee, I am becoming a little depressed because I do love milk, cream and cheese, these are a few of my favorite things. I am thinking I need to give these things up to feel so much better. I would rather feel great than eat these things I am thinking.
I am not a fruit person. I will eat bananas and apples if I must, but I would rather eat vegetables. I love vegetables. I can eat any vegetable except brussel sprouts sauted in onions, garlic and olive oil. I am thinking I should try and experiment and see if eating vegetables and grains that do not contain gluten such as Quiona will change the way I feel in the next few weeks.
I think it is so important to keep a food and mood journal because I know I cannot remember every single detail of my life everyday. I forget things all the time. Keeping a food journal will help decide if certain foods cause flareups with the MS and you will know in time what foods you can and cannot eat.
My goal is to eliminate gluten – cold turkey – pretend that I have a gluten allergy and must stop eating all forms of gluten and then work my way to dairy and sugar products. I think at this point of time in my life I am 44 years old and it is time I started working hard to take care of myself. It is crucial.
My motto right now is “it is my life, and it is in my hands. I must make the changes to control and improve my situation right now”.
MS and My Life 