Reminder of Death

A relative of my husband died a few days ago and it reminded me how strange life really is. Death will happen to everyone, but no one really takes the time out to think about it and its implications. The relative who died was relatively young and suffered the last few years of her life due to cancer,leaving three great children and a husband. They were all her support and were very strong for her till the very end. They accepted her death saying she is now in a better place where she is not suffering. For she suffered a lot and they wanted her to be at peace.
The question we should all ask our self is, "What do we want to leave behind when we leave this space in time?" I want to leave a legacy for my children and the world. I want to have a global impact on people in a positive way. I want to be remembered as a person who preached greatness and who lived a full vibrant successful life. I want to be remembered as the mother who loved and cherished her children more then anything in this world, the wife who was devout supportive and caring, the sister who was supportive and loving, the child who was grateful, loving and appreciative and the Muslim who was dedicated, loyal and deeply thankful to God.

Extremely Agitated

I have been feeling extremely agitated lately. Especially the day I take the injection and a few days after. I'm extremely agitated and moody. I hate it. I really do feel the medication is causing my extreme mood swings, or at least adding to them. I want to discuss this with my doctor on my next visit.

Canker Sores

I have these awful canker sores in my mouth. Canker sores aer shallow, painful sores in the mouth. They can appear on inside of lips, cheeks, on the base of gums or under the tongue. I have one under my tongue and the other deep down in my mouth. They are painful, especially when I want to eat. Doctors don't know exactly what causes them, but they may be triggered by stress, poor nutrition, food allergies and menstrual periods. I have had canker sores come every few months lately.

I went to see my doctor and did liver function test and full blood work and all is well except I have a little iron deficiency. It's not very low but I need to take supplements. I will take some iron pills and hopefully that will boost my levels. Right now is also a little bit of a stressful time financially but I am trying to remain positive and not let it dominate me. I know for a fact that I can't afford to feel down.

Feeling Good

Well things are good these days. I am drinking my green drink every morning. It's been about five days now. I don't mind the taste that much. It's not tasty, but it definitely feels healthy. I go to an amazing yoga class once or twice a week. I am eating well. I am taking my vitamins. The essentials plus a grape seed extract. Five in the morning and four in the evening. I skipped a few evenings though. Once I feel confident enough about my body adjusting to them I will slowly work up to the recommended dose. Hopefully I'm on the right track.

Downside to the Meds

I am extremely agitated lately. I find that I'm losing my cool at the littlest things. I feel it could definitely be from the medication. Today I promised myself I will try to do everything in my might to have more control. Deep down, I feel I need to get off the meds. Even though I don't feel any physical discomfort from Avonex, I'm starting to feel mental discomfort. I will give it more time and see. I have an appointment with my Neuro to take blood tests and schedule an MRI. Time will tell what my next step will be.
As for my diet and vitamins, I am only taking a few vitamins a day. I'm a little confused about the vitamins I'm taking. I noticed there was soy in them and that makes me wonder if there is gluten. I am going to ask to find out. As for my diet, its alright. I am trying to gain weight. I am always trying to gain weight and it is very difficult, however i have now started to really focus on my food. The trick is to stick to the healthy food and gain healthy weight. I have decided to drink daily a vegetable juice first thing in the morning. It consists of:
2 stalks celery
half a carrot
half an apple
a handful of spinach
a piece of garlic or ginger

It's actually not that bad:) I am dedicated to my health, weight gain, a positive attitude and a calm nature. With the will of God I am on my way to recovery.

My New Vitamin Regiment

My vitamins arrived Thursday night and I started taking them on Friday. I am only using USANA vitamins as the doctor recommended. Friday morning during breakfast I took the recommended vitamins and immediate felt tired and weak. I decided not to take any more that day. The next day I took half the recommended vitamins and spread them throughout the day. I have been only taking half and so far so good. I got a little red rash like circle on my face at night I noticed it then the next morning it went away. It could be a reaction to the vitamins. I'm letting my body get used to the vitamins slowly. The recommended vitamins I need to take are:

Essentials (Mega Antioxidant tablet 2 in the AM and 2 in the PM and their Chelated Mineral tablet (2 in the AM and 2 in the PM). This provides the cellular nutrition the doctor recommends. He also recommended 2 of their fish oil capsules daily called Biomega 3, 4 of their Proflavanol 90 daily (this is their grape seed extract), 4 of their Active Calcium daily, along with 2 of their Coquinone 30 daily (this is their highly absorbable CoQ10, which is equal to 100 mg of powder form).

That is a lot of vitamins, twenty a day to be exact. With the will of God, I pray my immune system will be restored.

First day on Aggressive Vitamin Regiment

I received my package from the US last night and this morning I started my vitamin regiment. It's a lot of vitamins that I have to take daily, but I have complete faith in the doctor that prescribed them to me. With the will of God, I believe I am on the right path to recovery.

One week on Avonex

I just took my second dose today and so far I'm much happier on this medication then Rebif. I don't have to inject myself three times a week and feel extremely weak most of the time. With Avonex its really just the day of the injection that i have set backs and the rest of the week is fine. I feel my life is so much better. I feel better. When i wonder why i didn't' stop Rebif earlier i just think to myself because everything is as it should be. If i didn't take Rebif then i wouldn't have suffered which in turn led me to seek alternative medication and seek out a doctor who has prescribed to me a vitamin regime which i will start once I receive them in a few days. However, if anybody asks me Rebif or Avonex definitely i would say Avonex. It is easier to tolerate, and i believe more practical.

First day on Avonex

I went to the hospital today at 11:00 in the morning to take my first dose of Avonex. At first I was nervous, starting a new medication and a bigger needle, but thank God it wasn't painful and it was quick. I left the hospital hopeful. I took two panadols to make sure I wasn't going to feel the pain to much. I did my daily activities but started to feel tired around 3:00. I took another two panadols. Things were ok but by 6:30 it hit me. I felt complete physical weakness. I could barely find enough energy to lift my arms and legs. I laid down on the bed for about an hour strongly aware of my heart beat, while my body was completely sucked of energy. After about an hour and half I felt the weakness wear off and so I got on the computer to write this update. I pray this will be the only day I will feel side effects of the medication.

Making Healthy Choices

I have decided to stop eating white carbohydrates and switch to brown. White is processed food which causes oxidative stress, the underlying cause of many diseases. I am trying to cut it out of my daily food intake. I am now eating brown rice, which is not bad at all, natural bread, or spelt bread and mainly Rye bread, which I am really learning to love. They are wholesome and I actually get full faster. I have also started to use brown natural cane sugar instead of the processed white sugar. I have stopped using the microwave as well. I pray I will stick to these decisions.

Changing to Avonex

I went to see my Neurologist and he told me that I should go on Avonex since I definately didn't tolerate Ribif well. Avonex is injected once a week instead of the Rebif three times a week. However, it is a longer injection that will go into the muscle. I'm not thrilled by the idea but i will go on it confidently.
I still in my heart don't believe medication will get to the root of the problem like the vitamins, but I will take it while at the same time taking my nutritional supplements that I have been recommended from a doctor. I still have not received them yet. I will take both the medication and my vitamins and then when I do my MRI and see my lesions decreasing then I will know its not the medication but the vitamins.

Feeling Alive Again

I just came back from a yoga workout and I feel great. I feel I did something absolutely essential for my recovery. I realized how stiff my body is and how much work I have to do to get my flexibility and balance up to par. I am committed more then ever to have exercise as a big part of my life. Now that I have my energy back I feel I can do it. The nine months I was on the medication I was depleted of any energy I originally had and never could work up energy to go to the gym.
I am planning on going back to the neurologists office at the end of this week so we can discuss my case. I really in my heart don't feel medication is the answer for me. I feel I will improve dramatically now that I have experienced the dark side of the medication. Those nine months of sever muscle and joint pain, overall weakness, made me realize more the ever how much I want to heal. I am dedicated to my health.
I have contacted a doctor whom I feel will aid me to recovery. He has prescribed to me a list of high quality vitamins which I will start as soon as I receive them. For now I am sticking to the vitamins I have listed. With the will of God, I believe in my heart I'm on the right path.

Going off the Medication

I have decided to take a break from my medication. I will try a one week period and see how my body feels. I discussed it with my doctor and he finally agreed. Right now my body feels broken. Every muscle and join in my body is aching. I really don't want to live like that anymore. I pray and hope I will bounce back after I stop the medication. In my heart I feel that once I stop things will get better and I will start to recover and heal, with the will of God always.

Update

I'm alright these days. Still take panadol the days of my medicine. I am trying to take as minimal as I can but sometimes I just can't tolerate the overall body weakness. I am positive though. Despite the feeling that i'm dragging myself through life, I am trying to lead a normal life and not let my body get the better of me. I am taking my vitamins, doing yoga, trying to eat as well as I can and pray these vitamins are going to strengthen my immune system.

Sticking to the Medicine

After seeing the last doctor, I have decided that I have to stop trying to get off the medication, but just live with it. If I do a few MRI's and the lesions are getting smaller and less frequent then the medicine is worth the pain. I will remain my alternative life style plus the medicine. I am planning on adding more vitamins in my daily plan.

European Neurologist

Tomorrow I have a consultation with A European Neurologist. This will be the first European doctor I see. I feel it is important to get another perspective on MS and I hear that European doctors are more familiar with MS then most. I want him to review my case carefully, taking into consideration that I have been on the medication for seven months yet unsure if it is the right thing for me. I pray he will give me more insight, guiding me in the right direction to healing myself.

Searching for the Answer

I have been contemplating stopping my medication for some time. My body does not react well to it. I just don't feel that taking pain killers every day is the right solution. That can't be good for me! I have almost all of the side effects. Aches and pains, injection site itching and redness and what topped it off was a few nights ago I had lower abdominal pain, which is also a symptom. I laid down in bed exhausted and all of a sudden I felt uncontrollable tremors. I was shivering and couldn't stop for about an hour or so. After the shivering subsided I just lay weak. I felt it was from the medication. My body just couldn't tolerate the achy pain anymore and that's what happened. I called my Neurologist in the morning. He told me it could have been something else not everything is related to MS so I should go see an internist. I did just that and after six hours in the hospital and having done all kinds of tests, everything was normal. I did an ultra sound and blood tests and they found everything was normal. In my gut I know its my body reacting to the medication. I told myself maybe it was a virus or something since i had a slight fever that night but I'm not convinced. I have to find an answer. Is this medication really helping me. I just want to know what it feels like to be medication free so i can decide. I feel I wont start healing until I stop the medication. It might be stopping the progression for the time being, but its not helping me heal and I do believe I can heal.

Last night before I went to bed I prayed to God, if this medication is good for me let me stay on it and make me feel good about it, if this medication is bad for me, help me stop it with confidence. This morning I woke up and called a big hospital in the country that is associated with Johns Hopkins and I am trying to make an appointment with a European doctor. Maybe he will show me the way. I also got a reply email from one of the authors of the books I read and she said the choice was mine, but she gave me advice on what strategy i should take if i stop the medication. Maybe that too is a sign that stopping for a while wont hurt. I just need to hear that from a doctor. I am in God's hands and I will wait for the right moment to decide but for now I will not take the full dose of the medication. Today I will take only half.

The Miracle of a Shower

I wake up feeling very soar in the mornings. Every muscle and joint in my body aches with pain. I just feel crushed. I have felt this overall feeling since I started my medication in February, but I stick to the medication since I know its not the right time to stop it. What usually jolts me back into energy is a good cold shower in the morning. It really uplifts my mood and gives me a lot more energy.

Reiki

Reiki is a Japanese technique for stress reduction and relaxation which promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us causing us to be alive. If a persons "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.

The word Reiki consists of two Japanese words - Rei meaning "God's Wisdom or the Higher Power" and Ki meaning "life force energy". So Reiki is actually "spiritually guided life force energy."

In the past few years I have been interested in alternative healing and one of my interests was Reiki. I decided I wanted to try it so I called up a women I read about on the internet who has years of experience healing people. My mother came with me and we took a cab trying to find her place. After getting lost of a while we finally found her house.

The "reiki master" ansked my mom to wait while I had a 45 minute healing session. She took me to her "healing room" so we could begin. She had another lady with her who would assist her. The room had symbols of all religions and she said that all religions are coming form the same source the One God and that is where the healing energy comes from. I laid down and for the session both ladies laid their hands on certain parts of my body each time for about three minutes. I felt heat in many parts mainly my head and neck and shoulder area. There was relaxing music playing during the session and it was overall very relaxing, kind of like a massage.

After the session the lady told me that I may feel really energetic or tired and want to sleep, every one reacts differently. I felt fine, maybe a bit energized. After we finished I went to find my mom sitting in the ladies salon waiting for me. We all sat down for a while. I never told the lady I have MS. I wanted her to tell me what she felt, however, she didn't say much. She just said that she felt that there was more heat in the head and ear region. She said for me not to be worried. She said she can only say where she feels there could be problems. I decided to tell her that I have MS. I told her that I was interested in alternative healing because I have Multiple Sclerosis, she jumped saying that she knew! She said she didn't want to tell me to worry me, but she knew because a certain man told her. She showed me a book of a Shaikh in Sudan. I found all this very strange. She said I was going to heal myself. I didn't take what the lady said too seriously, but I do believe that I will heal myself with the will of God.

Visit to another Neurologist

I am on vacation now, visiting my family. I heard there was a good doctor that is very experienced with MS so I decided to open a file here as well.

The doctor seemed very well informed about the latest drugs and was very optimistic about the future of drugs for MS. He asked me to do a complete blood work and take a few tests such as vitamin D and B12 . I did them all and thank God all my results were great. My hemoglobin is a little low but overall I'm doing well. I asked the doctor about food and like all the neurologists I've seen, he does not believe food has anything to do with MS. That was disapointing. I still do believe a healthy diet is essential for MS despite what the doctors say. I am going to see the doctor to discuss my test results when he gets back from a business trip in a few days.

Visit to the Neurologist

I went to my Neurologist yesterday and I got a few months supply for my medication. Yes, I am still taking it and I have decided to take it willingly without worry until I do my next MRI and I notice that I am healing, with the will of God.

My doctor believes that I should take the medication and not stop. I asked him what would happen if I stopped the medication for a while and he told me that with his twenty some years of experience, those who were on the medication were doing better then those off of medication. He said that if I stopped the medication I would get worse faster and that if I went back on it, it would not have the same effect as it would before. My doctor also doesn't believe that food has any effect on MS. This bothers me. I believe in alternative healing and I feel I still havent' found the right doctor which believes in both the medical world and the alternative healing. I am sure I will eventually.

I'm really not sure what to make of all of the doctors comments. I would like to know if those off of medication were taking vitamins and exercising and living a healthy lifestyle and still getting worse. There is so much I would like to know about other people living with MS. Maybe this website will help me learn more about the disease and help me heal faster. I believe "if there's a will, there's a way," with that in mind, I know I can only get better with the will of God always.

Difficulty taking the Medicine

I don't know why, but taking the shots the last few times has been more difficult. They are painful and I am losing my nerve to give them to myself. Is it a sign that it's time to stop or is it my mind causing it to be more difficult. I really don't know. I am searching for answers so I know they will come.

Declaration to be MS Free

I declare today, July 5, 2008, that I will become MS free one year from now. My lesions will heal and I will regain my strength with the will of God.

My Last Relapse

I remained relapse free for five years. I stuck to a low fat diet and didn't eat much dairy and red meat. During those five years, I had two miscarriages and I had two perfectly healthy children which I love more then life itself. I also moved to a new home twice. The year before my last relapse was tough. I gave birth to my daughter then moved to a larger house. I have a helper which I am very lucky to have so it was easier for me then most, but nevertheless, my husband was having issues with work and it all piled up. I over did it.

My legs started to get pins and needles. The numbness lasted for more then a month and it also would come in my arms at times. I also felt extremely weak. My legs were weaker then ever. I could barely find the energy to get out of bed. Emotionally I was unstable and I started to think that maybe I should go on a medication. I never wanted to. As I mentioned before I felt, and still do feel, medication is not the answer. However, I started to see all the neurologists of the major hospitals in my area. I had a neurologist but my family felt he was not aggressive enough. He did not recommend I go on medication since I had my relapse after five years and he felt I would bounce back.

My family insisted I should be on medication because all the doctors in their area say that I should be on something. Finally, my current neurologist put me on Rebif, even though I really in my heart felt it was not the answer. I know the awful side effects of the medications for MS and I just felt I could get myself back into perfect health on my own with more research and dedication. I was reading a book at the time, "What your doctor doesn't know about nutritional medication could be killing you," and I started to take more supplements. Before I started the Rebif I recovered fully. I still would have the underlying fatigue if I didn't sleep well, but the numbness was gone. From barely being able to lift my body, I was up and moving again. Yet, despite my hesitation to take the medication my family and the doctor insist I take it. I decided at the end I would try it. I guess I got scared.

I have been on Rebif now for a tough six months. I take the medication three times a week and the days I take it I can get very tired and weak and my body can ache severely for a few hours. If I take panadol a few times a day things are much better, but I really don't want to rely on pain killers for the rest of my life. Therefore, I try not to take the panadol unless I really need something to help me cope with the pain. I also worry that the panadol can cause more harm to my liver, since the medication is already putting the liver at risk.

Overall, I feel worse on the medication. The doctor says things will get easier with time, who knows. In the mean time, I feel the medication does more harm to my body then good. The days I take the medication, after I take it about four hours later the weakness hits me for a few hours then I just feel tired. The next day is better because I am medication free but I still feel achy. Then the whole thing starts again the next day. The only days i really feel kind of normal are Friday and Saturday. The two days in a row I don't take the medication.

I never felt the heaviness of MS until I started treating it. I felt pretty normal before. Normal but with the underlying fatigue. I plan on taking an MRI soon and I pray to find less lesions. I don't plan to be on this medication forever. I want to know if what i am feeling is MS and or Rebif. Right now I feel its all Rebif symptoms which are making my life difficult. I plan to see the Neurologist soon to discuss maybe taking a break. I doubt he will like that, but we will see.

Why Write a Blog about MS now?

It is true, I have had MS for more then six years and only now do I share my story. I am a very private person. Only a selected few know that I have MS, and it is still not a common topic of conversation. I don't like to be pittied. I am strong. I have my faith and I don't care for anyone to label me with a disease. I will not let the disease define who I am. I feel not talking about it publicly allows me to control it. I guess I always wanted to share my story and this way is the perfect way I can share freely without feeling vulnerable.

Why "Unraveling" MS?

I am a person with deep faith in God. I believe God loves me and only wants to teach me lessons to make me a better human being. MS came to me for a reason and what that reason is exactly I will never know, but I do know it will make me stronger and wiser. I also believe that I can achieve perfect health again with dedication and a strong will.

The Time before my Diagnosis

I started thinking about my life and realized I had been in emotional ups and downs over the years before I was diagnosed. My husband and I met in university and were deeply in love. He graduated two years before me and we got engaged when he graduated. He went to start working and make a life for us while I finished off my college education. Those two years apart were tough because we communicated greatly online and only saw each other twice but our love was strong. I got married after graduation and moved to a new country. I love my husband dearly, but marriage especially the first two years has its ups and downs.

I used to get tired at times and I guess I thought it was normal even though it probably wasn't at the time. I even refused to take a few jobs because I felt I couldn't handle long hours as well as having a house to take care of and to cook. I valued my home life. I settled for a teaching job because the hours were good and the pay at the time was not bad. More then anything I wanted to start a family. That didn't happen easily. After a year of marriage, I became pregnant and was the happiest person in the world. I remember the excitement I felt was indescribable. I thanked God deeply, however, I miscarried six weeks later. It was a tough time emotionally but I got through it and I knew it was for the best. I always remained thankful to God, even at the lowest of times.

A year later, God blessed me with another pregnancy. That was a long year for me because I really wanted a child. During that year I was diagnosed with MS and decided not to take medication, despite the doctors recommendation to start. I also really didn't believe medication was the answer for MS, I felt it was lifestyle and food. I wanted a child more then anything and I knew if I started the medication it would hinder my chances of trying to get pregnant. So I finally did get pregnant and I was once again the happiest person in the world. I was hopeful but cautious because I had a miscarriage before. But with the will of God, I got pregnant. It was tough at first, I had severe morning sickness for five months but it was all worth it when my child was born naturally and completely healthy Thanks to God.

The Time of my Diagnosis

I was 23 and teaching in a school ,when suddenly I felt dizzy. I was at the black board trying to control the students when it happened. I immediately got someone to take over the class and went to the administrative office to tell them I had to go home and rest. Despite the fact that I explained to them I was dizzy, they were not very pleased that I had to leave because they did not have anybody to take over the class. I was upset and said that was not my problem and left. I went home and laid down in bed and for a few days went back and forth to doctors till I ended up in a neurologists office. He scheduled me for an MRI.

My dizziness subsided and I took the MRI. I asked the technician if everything looked OK and he said he couldn't respond and that I would have to wait to see the doctor. When I went to the car, my husband got a phone call from my family and I felt something was wrong, like he was holding something back. I then got concerned and when he got in the car I asked him and he said everything was fine and that we should wait till we see the doctor.

When we finally went to see the doctor, he explained to me matter of fact that I have Multiple Sclerosis. He explained to me what it was and that it was not severe, explaining what I had was an MS relapse and that they will come and go through the years. He also explained to me that some people have very little relapses in their lifetime. I felt hopeful and kind of relieved because I realized that the excessive tiredness and fatigue that I had felt over the last few years was not normal, but was actually from a neurological disease. I also realized I had a relapse a few months before when I was on vacation visiting my family. One of my eyes became a bit blurry and I went to an eye doctor and he said it was from the change of weather. I went with that and it went away in a few days.

The doctor asked me to do a few more neurological tests over the next few days. I remember those next few days were not pleasant, I was curious about MS. There is a lesson to be learned here. I was strong. I never said "why me." I felt an incredible amount of support from my family and that always helps. My husband bought me my first book about MS and I read it in two days. After that, I started to read as many books as I could on the subject.

Now that I think about it, MS came as a relief. I was not happy with my teaching job, the children in the classes were misbehaved and hard to control and the school expected a teacher to control 3o some children in a class with different level backgrounds in English and the pressure was all on the teacher. I totally disagreed with it and the stress took its toll on me. Most teachers had to yell to control the students and it was just exhausting. I immediately quit my job and stayed at home and read a lot about MS. I changed my diet to a low fat diet and just took it easy.