This is something that I just recently discovered – Gluten – What is Gluten? I really never understood the word  until I started doing research on it.

Gluten is a mixture of proteins that are found in wheat, rye, oats, triticale (a combination of wheat and rye together), and barley. Interesting since most foods on the market are made with wheat flour. Many foods I love have these grains in them. I love oatmeal and oatmeal raisin cookies. Guess I have to make another diet change. CRAP!

The therory is that MS attacks are caused by food allergies. Most people usually find a pattern after keeping a food and symptom journal for about six months. Some have said that eliminating milk fat, gluten, animal fats and sugar from the diet, they have noticed a slow but steady improvement in their health. This actually makes sense to me — diet and diseases are often related somehow.

We all know that sugar is bad – it is poison – it feeds the bad cells in the body and causes major medical problems for many.  Milk fats, animal fats cause the cholesterol to be high and gluten – well I am still researching and learning. I hope that I will have a better understanding as to why Gluten affects the body so strongly.  I do know this – when I eat a lot of breads and eat cereal or oatmeal everday, I do not feel right. Just as when I eat fatty meats such as beef. I become extremely tired. When I watch what I eat, eat a lot of vegetables, fish, organic meats like chicken, blueberries, cherries, drink green tea, eliminate crackers, breads, cheese, milk and sugar I feel soooo much better. Hello! I think this is a clue. I have more energy and my mind does not feel like it is in a fog.

I hope to learn more about this Gluten free diets – I am reading an article by Roger MacDougall – My Fight Against Multiple Sclerosis – he claims that he eliminated gluten, dairy and sugar from his diet and has been in remission for long time.

Interesting reading – check it out – www.direct-ms.org/rogermcdougall.html

As I sat down to write another post in my blog I realized after writing an essay paper for almost 6 hours for school, I was tired. I need to go to bed soon, I am exhausted. I know that we as people often tend to push ourselves to the limit. There are too many times I ignore what my body is trying to tell me – when I am tired I need to rest. My body does not function to it’s fullest capacity when I am exhausted. I have to remember that I have MS. There are certain things that I need to do to take care of myself. I must eat right, get a lot of rest and put me first before anything and anyone else. It’s all about me. If I don’t start taking care of myself, I will have a bad attack. My attacks get worse each time. I have different symptoms, they are never the same. Are these people going to take care of me, when I have an attack. I bet they don’t. There is only so much a person can do for someone.

I cannot worry about what others think of me. It doesn’t matter what they think. If they get mad, upset or cop an attitude – TOO BAD!!!!  This is about me. This is about what my body can handle. If I am tired, they need to understand that, I must rest. It is important to be healthy at all times. It takes a person with MS twice as long to recuperate from exhaustion that it would be for a person that does not have MS. I have to remember – it will be there tomorrow, whatever it needs, it will be there tomorrow. I must listen to my body. It is all about me!

My 4th attack happened two years ago, Thanksgiving time. Thanksgiving is a very big holiday for me. I normally have about 10 to 14 people at my house for dinner. I really go all out with the food and everyone always manages to enjoy themselves. When my attack happened, I totally freaked out because my hearing was affected. I am deaf in my left ear, no one is exactly sure why. I had to go to Puerto Rico for business trip to train people to use a specific accounting program, and when the plane landed, my left ear started buzzing really bad. Everyone sounded like an echo. It was awful, I could not adjust to using the phone there because I was so uncomfortable. When I returned home, my ear nose and throat specialist would not pinpoint as to why I lost my hearing. He said it was either from my MS, having deaf parents or the pressure in the airplane. So when my right ear started buzzing really bad when I woke up one week before Thanksgiving, I totally freaked out. I made an appointment to see my neurologist – Dr. Idiot that morning.

My sister came with me because I was so tired and my whole body was in pain. It was difficult to move normally without feeling like I had been attacked with pins and needles everywhere. When I got to the doctor’s he made me do the nose and finger touching, walking in a straight line, flexing my feet and legs etc. I never get that but he seems to scribble some notes into his chart every time we do these tests. He says to me “yep, you are having an attack”. I am like really? wow! that’s news to me! NOT! Of course I am having a bad attack. I said, ok what do we do now. He said well we don’t prescribe predisone anymore, you will have to go on inravenous steriods called medi-soluable. It is 1000 mg of steriods pumped into your body once a day. A nurse will come out to the house and set up the line for you. Oh great! I think to myself, how will I explain this to people at work, because they do not know I have MS.

I call in sick for 2 days, my work does not have a controller, I have been running the accounting department for 1 year. The nurse comes out and puts the IV line in and shows me how to use the steriods. The first treatment makes my blood sugars shoot up to 290 to almost not normal 300. I had to call the doctor to find out what to do. He told me to go to the ER.

The ER takes me right away because my sugars are high, and starts an saline IV and brings the sugars back down to almost 165 which is much better. What a stressful time. I decide to tell my bosses at work, and they seemed to be understanding about my situation. I told them that I was having an MS attack and I am in a lot of pain and can hardly move. Also, I would work at home so that things would not get behind. I manage to keep things under control.

I cancelled Thanksgiving dinner because I really could not do anything, bend over let alone try to cook. I was so disapointed. I felt like I let everyone down. My attack lasted aboout 2 weeks, after the IV steriods was done, I slowly began to feel normal again. The treatments really left me agitated and in a bad mood all the time. I felt like I wanted to crawl out of my skin. It was the worst feeling I have ever gone through.

Today, I thought about some of the obstacles I had to overcome with having MS. One of my biggest pet peeves is that people often tell me “you are using your MS as an excuse for everything”.

Sometimes I find these things out from other people because some are afraid to say it to my face. I think that those kinds of people that do these things are people that have no empathy for others, it is all about them. These types of people are not in my life anymore because they are negative forces of energy that drain all the positive energy out of me. I figured this out the hard way, after reading the book “Lean on Me” by Nancy Davis – she had to leave her husband because he just did not understand what MS is and his attitude was draining her to the point it was unhealthy. I realized that I had some people in my life that have upset me so much that have caused me to have bouts of depression, being so unhappy about the friendship and always having to constantly be on guard so that I wouldn’t offend someone about something I had done. It became to the point I almost was going crazy and I was so unhappy. My doctor told me I had to make some heavy decisions about what to do with my health, if I was going to continue on this path I would definitely become bed-ridden with MS flare-ups every day.

I chose positive energy and took control of my life and forced the negativity out of my life. These people are no longer a part of my life, I have blocked all their negativity and no longer allow them to control my feelings or me. How dare they make me explain and defend myself for something I have absolutely no control over. I cannot control the MS flareups. I should not have to explain anything to anyone. They should accept and understand how I am feeling and not throw that back in my face ever!

Now I surround myself with people that respect my MS and me. That is the most important thing you could ever to do yourself. I should never ever have to explain to anyone why I feel the way we do, this is something we have to life with everyday and our family and friends need to accept that. If my friends cared they would pick up a book about MS and read on it. Do some research on it. Be a friend. We have bad days, we have good days, we have poor-me days and we have I’m-on-top-of-the-world days. To demean or put down someone because of MS, this person needs to be flushed out of your life forever! I come first in my life, then everything else falls into place.

I never shared my MS stories with anyone at work in fear of losing my job. I found that out the hard way when I told someone I had MS. They made such a big deal about it, I thought my whole world had just ended. People have a tendency to make things much harder than they really are. For the longest time, I did not share my disease with anyone until I worked for a general contractor in Florida who had asked me to fill out an application. One of the questions on the application was, “Do you have Multiple Sclerosis?”. I struggled with answer that and then I decided to say “Yes”. Apparantely he did not read the application until a few months after I was hired. My boss said I know that you have MS and I have a friend who has MS also. I would like you to meet him. I few days later I called Philip. We spoke for a while and the impression I got from him was that once you are diagnosed with MS your life is basically over. I was upset after I spoke with him and thought he was one of the most negative people I have ever met.

One day , he came into the office to meet with my boss and I was introduced to him. One of the most nicest people I have ever met. I think that he had so many issues with having MS and he came across on the phone as negative. I learned a lot of things from him such as making sure that I eat a banana everday for potassium to prevent muscle spasms. I used to suffer from muscle spasms all the time but now I do not. KNOCK ON WOOD! He also told me to take potassium tablets with magnesium in them to prevent muscle spasms and constipation. Apparantely constipation can be a problem for people with MS. I found this out years later. He and I talked a lot about our disease. He was in a more advanced stage than I was, had a hard time with balance and was tired all the time. I was able to relate to him on a certain level but it is not the same as now. When I met Katie for lunch a few Fridays ago, the feelings that I shared with her were so much more. I felt so much better than I did with Philip. I could relate to Katie and the other ladies I met on a much better level.

Sometimes Philip could be negative about MS and I was looking for more of a postive support. I got that finally. It is nice to be able to share stories with people that can totally relate to you.

I remember my 3rd attack like it was yesterday. I had just finished catering an event in a house that had no air conditioning. I think the temperature was about 95 degrees inside that house. It was a very intense day. I was exhausted when I came home. I slept a lot the next 3 days because of the heat. Then I had another cooking event the following weekend and this time I think this triggered the MS attack. I came home and my feet was ice cold. I just could not warm my feet up. I wore socks, slippers, wrapped my feet in blankets, just could not get my feet warm. 

I went to work the next day and just felt so tired. I was just exhausted, my body hurt, the pins and needles came back and my feet were so cold. Later that afternoon I tried to  hold a pen in my right hand to write and felt this horrible pain go up my arm into my neck and up into my brain like a cramp and electric bolt shooting through my veins. I could not even hold a pen to sign my  name. I went home early and made an appointment with my doctor. I was not able to get in to see him for a couple of days so I called in sick because I could not control my right foot to press on the gas and brake. I felt it was too dangerous to drive and my sister worked on the other side of town and could not drive me. My mom was not allowed to drive because she had a tumor that was wrapped around her carotid artery and her doctor forbade her to drive.

The symptoms got worse. My right leg was almost useless. I had to pull my leg up with my left hand to get up the stairs into the house. I could not even brush my teeth – can you imagine. My mom and sister went out and got me an electric toothbrush so I could manage to brush my teeth using my left hand. I had difficulties with personal hygiene and had to ask my sister to blow dry my hair for me. I felt so useless – it was awful. My poor mom – she had a hard time seeing because the tumor was pressing on her left eye, she struggled to make me a sandwich.

When it was time to go to the doctor, no one was available to drive me to the doctor, I think my sister had computer problems at work and could not take me, friends had plans, so I told my mom she needed to come with me. What a pair we made — I laugh about it now but I did not laugh about it then.

My mom had to drive me, I could not control my right leg and foot. She had a patch on her left eye so it made it difficult for her to drive. We had to drive like 35 – 40 miles an hour all the way to the doctor’s office. Took the back roads so we would not have problems driving. My mom was weaving one way to the other, I had to like hold the steering wheel so that we would not drive off the road. When we got to the doctor’s office, we had to lean on each other to get to the building. What a pair we made. She was leaning on me to see and walk, I was leaning on her because I had no movement in my right leg. I think people were staring at us when we walked into the doctor’s office. What a sight!

My neurologist saw me and said I was having an attack, naturally! He said it would last about 3 weeks and I should start feeling better. Gave me a prescription for Predisone and Zantac. After 3 days of taking the meds I started to feel like my self again. This was September 2002. My neurologist told me that I needed to start taking Avonex injections for my MS. I dreaded this day. He told me I had to, I had no choice. I am sure I had other choices but I was feeling so sick who was I to argue with the doctor.

After this attack, the left side of my body is always cold. It feels like I have ice water running in my veins.  My butt feels like I am sitting on bags of ice. During the winter time it is worse. I manage to get by. I think positive — I’m alive, I’m walking, I don’t need anyone to help me – that is all that matters at this point.

When I was first diagnosed with MS, I had no idea what to expect. I told myself that it was not a big deal and that I would survive anything that came my way. For about 10 years, I had no MS attacks but now that I sit and think about it, I am sure I have had minor flare-ups here and there such as being so tired not being able to do anything that day or when it became really hot outside I could not understand why I felt so weak and drained. I blew these things off as not getting enough rest and not eating right but in reality I was having a flare-up.

After having no major attacks for 10 years other than minor flare-ups I moved back to Michigan, and my whole life changed, new friends, jobs lost, having the huge responsiblity of taking care of a terminally ill parent (extremely stressful situation), I have had three major flare-ups here. These flare-ups have really changed my body and now I have things that affect me that did not happen before such as pain, feeling like I am sitting on bags of ice for long periods of time, razor sharp electric bolts that surge through my face and body when I am laying down sleeping, constant tingling in my spine, legs and feet.  I think the pain is the worst it is such a mind blowing thing. Pain 24 hours a day with no relief.

Now as I approach the age of 45 I wonder if my body will hold up for another 20 years because I am in school full time pursuing a Bachelor of Science degree in Health care Administration which I hope to apply this to help people with MS especially deaf and hard of hearing. I am scared because I will not be able to do what I want because of my MS. I have doubts and I still wonder. I am sure there are others out there that feel the same way I do.

Then….. I start back into school reading chapters and answering questions and I become inspired to go and conqueor the world. I shall not let this fear of MS scare me into hiding and not living my life to the fullest.

Well, I don’t know about all of you, but I have had my share of Dr. Idiots! I have had many doctors so far in relation to my MS. One doctor that I had in Florida had MS himself. He was a non-believer in medication for MS called  inter-feron injections. He said “it doesn’t cure MS, why take it”. I thought that it was a strange comment to say because injections can help prolong the progression of MS. Some people do not believe in injections and are more onto homepathy treatments.

My current neurologist now I call him Dr. Idiot! because he is an idiot. He has no compassion for anything I have to say. When I was diagnosed with Type II diabetes – oh great! another automimmune disease I have to deal with.  He simply laughed and told me I was fat and and I needed to lose weight and that I would be fine. Can you imagine the shame I felt when I left his office. I was so ashamed of myself because I was called fat by Dr. Idiot.

One time I went into his office because I was having a really bad MS attack and I had to wait a good 15 to 20 minutes to see him. I was in excruciating pain – the pins and needles and this time buzzing in my ear. He came into the office made me do finger movements, touch my nose, walk back and forth. I complained of buzzing in my right ear – freaked me out I thought I was going to be deaf in that ear. He said oh by the way, you are having an attack. YA THINK? No! Really?

He decided I needed to be put on intravenous medi-soluable which is a form of steriods. Oh my gosh! What a huge trip to be on these. Talk about wanting to crawl out of your skin. This treatment made my sugars go up to 290, normal should be 90. Had to go to the emergency room. What a pain in the neck! I was crabby, snapped at everyone for 5 days while I was on this treatment. I do not know if I will ever do this type of treatment again.

Gotta find a new doctor soon, he is really a pain and an idiot!

I have not had an attack for almost ten years until I moved back to Michigan from living in Florida for almost 18 years. My attack happened in November 2001. This was the first time I actually experienced the word P-A-I-N. I felt like I swallowed a box of pins and the pins were stabbing me all over inside my body. I could not take a shower or do anything that caused a lot of movement because the pain was just unbelievable. I did not have a job yet and so I did not have health insurance. I went to a neurologist in Farmington MI and paid out of pocket for her to tell me that I was having an MS attack. She told there was nothing she could do for me just to wait it out. Gee! I spent $195.00 for 15 minutes of the doctor making me touch my nose and walk in a straight line to tell me that I am having an MS attack and there is no relief for this kind of pain.

I went home and suffered in silence. My mom did not understand why I was quiet and did not say much. I tried to explain it to her but she did not understand. It was just easier to keep quiet and hope that the attack will be over soon.

My attack lasted almost 1 month. I realized that today thinking about my episode this was the beginning stages of having this kind of pain every time the weather changes and my skin starts to hurt. Sometimes it feels like pins stabbing me other times it feels like when you have sat on your foot for awhile and it has fallen asleep. Even though the fall season is beautiful here with the leaves changing colors and the air becomes crisp – I dread the season changes because I know that I will be in pain for the next six to seven months.

But I shall overcome this! One day I will be able to live pain free.

  Some days I can walk fine and my legs are not bothering me, I am not tired and I am having a good day, but I still park in the handicap parking zone. It is interesting to watch all the people’s faces when I pull up into a handicap parking spot and get out of my car and walk towards the store. What is funny is that they don’t know I can read lips. I can understand every single word they are saying. I have had people cuss at me, call me names, say nasty swear words, give me dirty looks and I have even had old people follow me into the store and say “honey, you are parking in a handicap spot, you should move your car so a person that does have a handicap can park there because you don’t look like you have a disability”. What a lot of nerve!  It takes a lot of strength for me not to slap and push people down when they tell me this. I understand that people want to protect the handicap spots, but I don’t feel I owe anyone an explaination as to why I am parking in a handicap zone. It is even funnier when old people pull right up next to me and give me nasy looks because I have parked in their handicap spot – oh my!

First of all, my doctor would not sign the handicap permit application if she did not think I needed it. Second of all, America butt out, I have a right to park in the handicap zone – I have MS!