Category Archives: Quirky things about me

Myra’s Testimonial

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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?!?!

MS Support Group – 2nd Meeting 09-13-08

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KUDOS!!! to Vicky for providing transportation so Myra could come and be a part of the meeting. Lori came because she wanted to visit with Lesa which is awesome. The more positive influence the better.
Myra Vicky Lori Lesa 09-13-08

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!

Healthy Food
Healthy Food

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.

The food was so healthy and organic. I loved what we had today. It was so cool because people were asking me for things that were organic and healthy and I had everything. Kewl Beans! The food in my house is almost all organic, dairy and gluten free, so it is work in progress. I do miss the bread, cheese, and dairy products though. One negative thing today was that Lesa started to have a flare-up. We all figured it out that it had to do with eggs. So now she knows as of today she cannot have anything with dairy or eggs. I explained the importance of a food journal. Myra shared hers with the group, and she says that she keeps track of everything she eats. Lesa realized that keeping a journal is so important.
I copied some information out of the book “The MS Recovery Diet” by Ann D Saywer and Judith Bachrach – to share with the group about different foods we should watch out for with the MS.  The one thing I talked about was that we cannot eat a typical American diet, because our MS bodies cannot handle it. The number one problem in today’s society is there are a lot of people who are sick all the time because they do not understand the importance of eating healthy organic food.
Caffeine and sugar is very addictive. If you drink coffee, some teas, cola soft drinks and chocolate – wean off these things slowly to prevent having a caffeine withdrawal and suffering from severe headaches. Learning to use subsitutes for baking and cooking such as spelt, potato and rice flour instead of flour. These types of flours are pretty much gluten free. Substitute a rice or nut milk instead of cow milk for baking, recipes will have to be tweaked for things to taste good. Instead of using sugar use Stevia – this is a natural sweet plant. Using olive oil, sunflower seed oil and canola oil instead of vegetable oil and shortenings because these are the healthier saturated fat oils.
Patience is important. It takes time to see the changes in our bodies and since MS is a disease that has no cure, we have time to make the proper adjustments to our diets so that we can live MS attack free lives. Wouldn’t that be an awesome thing!
What a productive day!

Heat and Cold Sensitive

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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.

Helping someone who is having an MS attack

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Myra and Pam 9-10-08

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.

Diet and does it affect my MS

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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”.

Having a bad night

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I don’t know about some of you, but I suffer from bad nights. I sometimes get severe muscle cramps that keep my up all night until 4 or 5 in the morning and leave me so exhausted I cannot function very well the next day. Last night was like that. I was so tired today I slept till about 2 pm today. I got up and took a shower and felt more like myself. I hate days like this. I know it was because I did not eat any bananas all week – it has to be because when the body does not have enough potassium it causes muscle cramps. I am kicking myself in the butt because I was not watching out for myself this week. I have to constantly remind myself “I come first” – I have to take care of myself before I can take care of anything else. I did not tell my sister, she did not look like she wanted to talk today when she got home from work. I guess I will just talk to my blog and get it off my chest.

I am going to school full time and I have to stay healthy and well. If I don’t take care of myself, I cannot do school and school is very important to me. It pays to listen to your body. My body punished me last night and I paid for it dearly.

The weather is changing too. I can feel it in my body. My skin on the left side of my body hurts sometimes. I feel like I have ice water running in my veins 24 hours a day. Not a great feeling, but I am going to remain positive about this — I will not be so negative about the fall and winter seasons here.

Is the MS under control?

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I got the strangest comment today from someone wanting to know if my MS was under control? I did not get upset, which is very surprising because I normally get uptight when I have to explain my situation for the 1000th time. I just realized that not very many people understand what MS is. It is such a baffling disease to many and widely misunderstood.

I simply just said MS is an unpredictable disease. No one knows when the next MS attack can happen. Someone can be fine for 10 years before another attack occurs which is what happens to me. Some people can have one attack and can never have another symptom ever again. Some have attacks every hour, some have them once a year. Everyone is different and it depends on how the person copes with the illness. Do they let the MS defeat them? Do they will their minds to get better? How does someone cope with MS? I know with me, I think it is power of the mind. I know that I go through the different emotional stages, why now, why me, I’ve been fine all this time I hate being on a steroid type medicine, I hate this disease. I feel sorry for myself for about a few days and then I am anxious to get my life on track and to get better. I will myself to get better. It may take 3 weeks, but I know my body is healing slowly. I have to believe that – it is important.

A new word – Lhermitte’s Sign ?!?

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I learned a new word today when I was reading my book “Women Living With Multiple Sclerosis” – by Judith Lynn Nichols — Lhermitte’s Sign – another word for electric shocks or tingling up and down the spine to the legs, arms neck area. WOW! Finally there is a word for this.  I looked it up on the internet — yep! these are some of the things I suffer from – check it out – the website is http://www.neurologychannel.com/multiplesclerosis/symptoms.shtml – interesting stuff.

Wouldn’t it be great if the tingling stopped? Maybe I could get a decent nights sleep for a change. I know that when I lay in bed the legs and butt tingle for hours – I have to lay there and will myself to sleep. My feet tingle – worse than my legs. It is very hard to concentrate so that I can try to go to sleep right away. Usually takes about 1 to 2 hours to finally ignore the tingling and go to sleep. This started about 2 years ago with my last attack and it hasn’t really gone away.

Myra called me today from our MS group, she was having a bad day. She suffers from tingling all over her body and has to rest. She was not feeling all that great so we talked for a while. I shared the new word I found – she said she would ask her doctor and see if that is what it is. Sometimes the tingling leaves you feeling zapped – no energy at all. Have to sit down and rest. I’m wondering if she and I have the same thing. I wonder when walking if that makes this Lhermitte’s sign worse – the tingling does not stop. Something to think about.

I think I’ve always had MS

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I think I’ve always had MS. I can remember certain times in my early childhood suffering from different symptoms that I suffer from now. I can’t help but wonder if you are born with MS and it is not something that develops later in life. I have asked my doctor’s that, but they tell me it is not possible.

I remember when I was really young around 8 or 9 years old, my family lived on a farm and there were bunk beds. I remember the hall light being left on because either my sister or my cousin was afraid of the dark or something like that. I was on the top bunk and I would turn over because the light would keep me up. Iwould get dizzy, the room started to spin. The feeling is almost like you are drunk and trying to sleep and the room starts to spin. Same idea. It would last for a little while, couple of days and then it went away. I remember this happening a lot when I had to sleep on the top bunk.

Other times I remember when I was 14 years old, I  belonged to the girl scout group and one year we all planned to ride our bikes to Mackinaw Island and back with the boy scouts group. The whole trip was going to take about 2 weeks and it was going to be in the beginning of July. I can remember doing the long bike rides and feeling so tired and not being able to continue. I could never keep up with anyone, always last and often felt like I was going to pass out. The girl scout leader had to pack my bike up on the truck and let me ride in the front seat with the air conditioning on I slept long periods of time. This happened several times through out the trip. I remember feeling hostility from some of my girl scout group comrades.  I couldn’t explain why I felt the way I was feeling.

Another time I remember very well, I was 22 years old I had joined an exercise group that had dancing and aerobics at the same time and it was upstairs in a hot room in Florida. The instructor made us run around the room about 50 times while having done aerobics for about 45 minutes straight. When we were done, a friend and I had to go downstairs to get out of the building and the hallway got really dark and big huge spots appeared around my eyes and I had to grab the railing to prevent myself from falling down the stairs. I was so dizzy I could not make the hallway stop spinning.  I was exhausted for days after that. My friend was so upset with me because I did not want to do this type of exercise anymore.

These are times in my life that I just did not feel good and people got mad at me because I felt those things. To this day I wonder if this was the beginning symptoms but because the disease was not talked about back then in the 70’s not very many people knew about it as much as today.

I am tired today

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Today is not a good day. My body feels so tired and groggy. Fatigue is a part of MS. It can mean many things. I know I am tired because I did a lot yesterday and over the weekend. I did not rest like I should have and now I am paying for it. I know I ate foods over the weekend that were not healthy foods. Why do I do that? I know I cannot eat certain foods. It affects me in many ways.

I feel so groggy. My definition of groggy means my body feels like it is being weighed down with a bunch of weights and I have to push myself to get going. It will be interesting to try and motivate myself – that today is going to be a good day without feeling sarcastic about it. I just want to lay in bed for a few more hours and sleep, but I cannot, I have an appointment at 10:30 today. I already re-scheduled this appointment twice.

Ok – enough of the whining and get motivated – to get through the day. The best thing I can look foward to is when I am done with my appointment I can come home and take a  nap.