It is an anniversary for me. My started my blog one year ago this month. Wow! It is a celebration for me, my blog has over 1,400 hits. I think that is amazing! The word is out, there are other people out there who are interested in what I have to say. I think that is pretty cool. I never thought this blog would achieve so many things. One is that I have met some amazing people out there who have MS or not. Share stories with me about people they know that have MS. It is an amazing thing to know that I am not alone, and people share the same things that I go through on a daily basis.

I am slowly sharing things with people. Some people have finally related me to the article I wrote for a local flyer for the deaf and hard of  hearing community and now people at work know I have MS and I think that the word will spread. I hope that it spreads in a positive way because speaking from experience most just don’t get it. Others say things that do not make sense to me. I am going to turn this experience into a postive experience because I know that people are going to say what they want without thinking what the outcome might bring. And that is ok. I am ok with that. Maybe 17 years ago I wasn’t ok with people saying things to me about having MS, but today I am. Who cares what they think! I am moving, I am working, I can see and hear and I can still do all the things I love to do – that is all that matters.

So on this note – KUDOS to my blog, I think it is a celebration of spreading the word and letting others know that they are not alone and they can come talk to me about anything related to MS or not. If I think it is something that can relate to MS, I will put it in writing!

As I talk to people that I know and some I just met, I find out interesting things about myself as well as other people. I think that one of the things I find common is that people are not willing to share that they have MS. I believe it is because those people do not hide their feelings and concerns well. One of the things I encountered is that people have stopped becoming my friend, or I tell someone I have been dating that I have MS and I never see or hear from them again. When I tell collegues at work or even peresonal friends-  the first thing that comes out of their mouth is “Oh, so that is why you have been acting this way”. I find that very annoying.

I have had MS for over 17 years and one of the things I learned was to not tell anyone I have it. Sometimes when I am having a bad day, I just simply say I don’t feel good. The reason is because – and… I know that people mean well… maybe we shouldn’t give her too much to do because it will cause me to become stressed and then an attack will happen or oh… that explains why you look mad all the time, or so that is why you have been acting the way you have been acting. Excuse me? Not understanding this concept at all.

Employers are the first to show the fear. One thing that is mentioned is that – well we are not sure that you are able to handle the work load so we will give it to someone else to do. Nothing like deflating your self-esteem.

Men I have dated over the years, they look at me in disbelief – you have MS – oh ok, then after the night out, I never hear from them again. What a crock! People I am fine. I have good days and bad days. I am fine. It is not a life-threatening disease for most people.

People when they find out you have MS and when they don’t understand what it is you go through everyday they  make wise-ass comments, roll their eyes, sigh and sometimes just say things that do not make sense, and can make it difficult to get through the day. I often wonder if they really support and understand what you are going through. I love this new one I just saw recently, met someone who had MS and the person that was with them was rolling their eyes and making a face like they were being bothered. I was shocked actually. I never came across someone who was being bothered because there was a conversation going on about having MS. Interesting observation which prompted me to write this blog.

Well to all of the ignorant people out there – before you open your mouth and say something dumb, say something that makes no sense and do a thing that would hurt someone, check out a medical webpage and find out about MS and how you can help someone.

Well, that is a loaded question I think. Sometimes I do not think of what the outcome might be when I eat wrong. I never eat fried foods really except for french fries, my utmost favorite thing in the world. I do not consider french fries as a fried food – well simply because it is just not in my vocabulary. I’ve decided, there is no room for debate!

Yesterday, my sister, a friend and I decided to go for some seafood. I though oooo!!! seafood shrimp because Shrimp has Vitamin D in it, and in the MS Diet book, it talks about some foods to eat and shrimp is one of them- well I had some of the most amazing appetizer ever — New Orleans Voodoo Shrimp – which is shrimp with bacon wrapped around it and this amazing bbq sauce. WOW! anyway, I ordered fried shrimp for dinner. Very good but not for me. I woke up today in unbelievable pain – talk about an eye opener. NO MORE FRIED FOODS!

I simply cannot eat fried foods – my fingers feel like stuffed sausages and my feet feel like Popeye’s feet so big in the front and so little in the back. I want to cry! Lesson learned and of course my sister thinks I’m stupid – she said you know better! She is right I do. Which leads to this conclusion – I am right — food does make a huge difference in how you feel. I am confident I am able to prove that. I can have shrimp just not with all the crap in it, on it, around it and and other it in it!

I know that some people do not believe me and want to argue that food is not the cause of what happens in our bodies. BUT – I disagree it is everything. I have had countless discussions with many people and have had heated discussions to the point people and I have gotten mad at each other and do not talk for a while – “I still stand by my decision  what we eat is how we feel later” — We have to eat right to be healthy and of sound mind. We are not well, tired and cranky because of the junk that we put in our bodies. Everything that we do is a reflection of how we feel on a daily basis. So, if I drink a lot of coffee that has caffeine in it, I am going to pay for it. I know it – my body starts buzzing. It buzzes for hours. It is the most annoying thing I have ever gone through. I find that when I eat salads, whole grains, and simple things like Salmon, any other types of fish, I am fine. So why don’t I listen to me? I know this, I know this!

It is a three day weekend for me. July 4th is tomorrow. Sometimes I t hink we take things for granted. I know I do. Have you ever forgotten that you have MS? Sometimes I do and it can be a blessing in disguise. I think that for me, for a long time now I always woke up knowing instantly that I have MS. It used to set the tone for the day for me. Now, after having it for a long time since 1991, I can wake up and think ok – what is the plan of action for the day. It is such a cool feeling. I still have pain. I still cannot do many of the things  I used to do but I am creative. I can go to my favorite coffee shop and drink coffee and write. I can still make chocolate chip cookies. I can still read, which is one of my favorite things. I guess what I am trying to say is that — don’t dwell on not feeling well, dwell on life.

I recently had a death in the family. My mom’s brother died. He pretty much had the same thing as she did when she died. Cancer of  the throat. My sister and I travelled to Wisconsin to pay our respects and we drove. Along for the ride was my mom’s other brother and cousin. I wondered to myself, which is worse cancer or MS? Then I thought, why am I comparing. I’m alive that is all that matters. Enjoy life, live it to the fullest and make all the big things that go wrong the little things. It is much easier to handle.

ASSUME: as explained in the dictionary —  1. to take for granted or without proof; suppose; postulate; posit: to assume that everyone wants peace.  

 I thought I would post the definition of the word ASSUME. How could someone assume something because 99.9% of the time it is wrong. Why? Because assume means take for granted, speculate assuming that everyone walks around this earth happy.

After listening to a few people comment about how I am as a person as led me to write this blog today. A lot of people assume that I am a very angry person based on my facial expressions. I find that odd as they have no clue to what I go through every day. It is so strange to me that people automatically assume that there is something wrong when in fact I am struggling every single day to NOT think of the pain that I go through on a daily basis. The assumptions get old. How does one get through that? I often wonder if there is something that I could do to make people understand. I realized over the weekend – no there is nothing I cannot do. If people want to assume let them. It’s amazing that they have all the time in the world to worry about what is going on with me. Actually I feel flattered in a way, that they are thinking of me all the time.

People who have been diagnosed with MS have different symptoms. There are some who do not have any symptoms and there are some who have all kinds of symptoms. What should really matter to most is that we are fine, we are alive, we are well. Not all the other stuff that is automatically assumed. Now I am peeved! Why do I have to explain everything. I owe nothing to anyone. However I would be happy to to explain the symptoms of what MS is and then maybe people can shut up about me. Should I ? Shouldn’t I? I am leaning more towards NOT.

At on this brief explaination, I leave all of you wondering today, gee wonder if she is mad today?

Recently I was asked – “what made me decide to take charge of my life and live it”. I think that the one thing I know for sure that made me change the way I live my life was watching my mom die. I am not sure she left us peacefully. Even though people say she did not suffer her last day, I know better. I was with her. I watched my mom suffer so greatly and was in so much pain and was not able to rest every moment that she was alive the last eight months of her life. She had cancer of the throat, parathyroid gland, partoid salivary gland. The tumors were growing so fast and furious, they disfigured her face and she had tumors growing inside her mouth and out of her nose.

So…. for me to change my attitude because I have MS – ppfffbbbttt – that is nothing compared to the pain my mom went through. After my mom died, I was really at a loss with myself. I had taken care of her for 4 years before she died, more intensely the last 8 months of her life. I really did not know what to do with myself after she left us. Some of my mom’s friends knew that I had MS. One of her friends had a friend or sister in law who had MS forwarded to her my name.  We met. We talked for 4 hours.

 I left with a need to know that I had to share my story with other people who have MS. This is a unique situation. I am deaf and hard of hearing, and to know that other deaf or hard of hearing people that were diagnosed with MS, shocked me. I have no idea why I thought I was alone with this. I realized I have a story I need to share with others. Doctors can be stupid people sometimes when there is a deaf or hard of hearing person that has MS or a disease. They never know how they are supposed to act. I get extremely annoyed when I have to go to the doctor and he has me do all these touch your nose, flex your feet, arms hands, shake my hand, squeeze my hand, now walk towards the wall. WELL!!!! How far are you supposed to walk…..  while they are talking to you back turned to the doctor’s face…….. before they realize oh yeah! She can’t hear me! – My diangosis for that ….. is my doctor just had a brain fart.  I have changed doctors at least 3 or 4 times now. Now my latest one is called Dr. Idiot! It’s frustrating. When I share this story with other fellow people who have MS and have a hearing impairment – they agree with me and understand exactly what it is I am talking about.

When my mom died, I decided that I am not going to live and wallow in self-pity because I have MS. I am going to live every day the best that I can for as  long as I can, because if for some unforsaken reason my body decides to let the MS take care, I will have plenty of time to sit and lay and think of the things I wished I would have done.

Couldn’t sleep, so thought I would jot down some things that happened this week. I am pretty sure that I had little MS attack although my body hasn’t really stopped buzzing since last weekend. We had high temperatures this week and I think I became over-heated as well. We all know that people who have MS cannot be over-heated. It causes so many problems. So I was a victim of being over-heated. I had to call in sick for the first time in 3 years because of a small set-back. So frustrating for me. My legs, arms, hands, back and my head is buzzing. It is not tingling this time, it buzzes. I am amazed at myself though because I got through the work week without getting into a huge fight with someone because that is how rotten I feel right now. I did have a huge debate with someone, and I am sure I disturbed the office, have to work on that. Cannot let people see me lose control because I am not feeling well.

I feel like sometimes I am powerless to change anything. I have to listen to my body. Listening to my body is one of the most hardest things to do because I have so many things I want to accomplish. Places to go, people to see, things to get done at work and going back to school. But when my body says ok, this is enough I have to stop and take care of myself. If I do not do this, I will pay for it later. I think people who have MS can relate.  Don’t get me wrong I do love to sleep, but sometimes I think…… well suppose if something does happen and I am not able to do anything anymore, which I dread this day but I have to prepare myself for because it can happen. But…. I feel like I need to do everything I can before this does happen. I have so much to do. I have so much to see. I have so many things to accomplish. I have goals that I want to achieve. I have so many dreams. My mind does not stop. It goes and goes.

My sister thinks I’m nuts sometimes. Because I think and think. She swears I’m adopted. I think that is so funny. But she is right, I do think and create things in my head. She becomes so amazed at my though process. She says I need to have paper around me all the time to write down everything I think because I have so many things to do, and create. I love to create. How can I be productive if I cannot do anything because my body shuts down sometimes. I am frustrated. This has been such a frustrating week!

I was interviewed today about my faith and my MS. Interesting how much I have grown as a person. When I watched the preview of my interview, I was surprised at myself. My attitude and faith about this disease is very strong. I will not let this disease defeat me. If I let this disease defeat me, I will consider that a failure. Failing is not acceptable to me!

If I have tried to live my life to the fullest and do something new and different every single day I am alive, I will be happy that I have done the best I could possibly do.

I often think about how I have put my life on hold for 17 years because of this disease and I do have regrets. I try and not dwell on the regrets and I can only learn from them. I have goals and dreams to accomplish. I am working on improving myself for me. I have nothing to prove to anyone but me. We all need to have this attitude every single day that we can walk, breath, eat and think.

I read the other day that Annette Funciello – the actress whohas MS. She is now not able to walk or able to talk. She is struggling and fighting for her life every single day she is alive. I hope and pray I am not like that. I cannot imagine not being able to talk. That scares me. But once again, I do not dwell on this. I think positive, be creative and move foward every single day that I can.

My motto for today is = Be Inspiring

Wow, it’s been a long time since I have wrote in here. Looks like the last time I was in this was around in December. I have a new member added to my group. It is always nice to have new faces to share the same stories and undestand how this baffling disease works.

I was watching TV the other morning because I could not sleep and watched an episode of Oprah (I am not a huge fan of Oprah) but she had Montel Williams on her show talking about MS. He made some very interesting comments that I had never thought of before. He mentioned that depression is the number one symptom with people who have MS. Interesting observation I thought.  This prompted me to do some investigating of my own.

I went into the website WebMD and the MS Society and both say the same thing. Depression is very common with people who have MS. Treatable by medication of course. Gee! do I want to put something else in my body, more medication. Interesting theory. I have not had Avonex injections for a while now almost one year and I noticed a huge difference in how I feel. Wonder if the medication has anything to do with it.

Common signs of depression are – lack of appetite, uncontrollable and unexplained crying jags, feelings of hopelessness and worthlessness – which that happens with me alot and irritable. I do get irritable with the littlest things sometimes. I hate to admit that because then other people will use that as an excuse and tell me that is why I am acting that way.

I am going to do more research on this as I think it is interesting. Will be sharing this with the group today hope to get some decent feedback to talk about it some more.

It is exciting for me. This week I received an email from someone in Southfield who has MS and wants to join the group when she gets better. I think this is awesome. The more people that get involved, the information gets relayed out there. I received a videophone call from another person from out of state. Imagine that! The information that was posted in Deaf CAN made it all the way to Wisconsin. I am so excited! I asked her for permission to share her story on my blog.

The person I spoke with today is Suzi Scalette from Waukesah, WI.  I hope I spelled her last name right. She was diagnosed with MS in June of 2006. We talked for about an hour on the videophone. Suzi comes to Michigan frequently, so I told her about our MS support group meetings every month on the 2nd Saturday. She said she would try to attend. Her MS symptoms seem so common like all of ours. The numbness is the biggest thing. She said that her numbness happened in her face, something similar to mine back in 1991. She notices like shock or tingling bursts in her wrist and arm areas all the time. Like a throb. That’s a new one. I am not sure if that would be considered an electric shock like Myra and I experience.

She did say something that is similar to tingling, we all have that at some point. She said that a while ago, she experienced some problems with her left eye. It was almost like as if her left eye had become an lazy eye. But when she rested and thought positive about things, the eye went back to normal. Seems like some have problems with their eye. It will be interesting to compare stories if she comes to one of our meetings.

I shared about keeping a diary. It will help with the food , emotional and other things that the doctors always want to know but we can never remember when, where, how, why. The diary will help that. She liked that idea a lot.  I also told her about different food issues everyone had.

I am so happy the word is out there. Hoping that this will make such a huge difference.