Happy New Year Everyone! It is officially 15 days into the new year and so far it has been interesting in a non-exciting way.

The good points so far is that I have not had a relapse in a while. I think it’s been about 2 years and not counting. I think that everytime I think about things like that I jinx myself, so am trying to stay on the positive side of things. How many of you have made new year’s resolutions? I made one and everyone thought it was funny. Pfbt!. So I have decided to make another one which is to stay on the positive side of things when dealing with life situations with my MS and to make an effort to post and write more in my blog. Let’s see if I can make that commitment.

This winter has been rough for me. The cold really makes my body hurt. I feel like I have ice water running through my veins. I just love that feeling. NOT!  Experiencing a lot of tingling in my legs more like in my spine area and the bottoms of my feet. I cannot tell if it is from my diabetes or not. It would be great to pinpoint that down so I can figure out how to relieve the pain without medication. Other issues I have been experiencing is my legs sometimes throb unbeliveably so. I am not sure if it is from standing all day sometimes when I am experimenting with cooking recipes or what. I am trying to not think the worst. Is it a sign of things to come? Here I go again, as my sister calls me “negative nelly” – well can you blame me?

I have not heard from any of my MS pals especially Myra. I need to make an effort to email them and see how they are doing and maybe do a get-together again. Would love to just do chats and see how everyone is. On that note, I think I will send an email to some and see how things are going.

Til next time. Have a great month.

Interesting article I read today in my new MS Momentum magazine I received today. The article talks about “hugs”. HA! As most of my family and close friends know me – I am not a hugger. Never was, but now even more so because half of the time I am always in pain. Sooooo, when people want to hug me I want to have a tantrum but I oblige and suck it up and give out hugs. The article that I read was called “Things you might want to avoid saying to someone with MS”. Gee I wish I can tape this on me where ever I go because — frankly the article says it all.

“BUT YOU LOOK SO GOOD” If I had a dollar every time someone said this to me, I would be extremely wealthy. Sure I look good, I always look good, I’m pretty, gorgeous big woman. But… that does not mean I feel great on the inside. Geez. Hello people! get a grip. #1 rule just because you look good, does not mean you feel good or have an illness. #2 rule suffering is not always visible. Just because I don’t have the look of pain and there are actually visible things on my body that you can see that will determine I am ill. This is where the MS HUG comes in. I am always feeling like I have a tight rope or noose around my waist and back area. When people hug me, it makes me so tense because I never know if I am going to be in pain or not, how about when I am sooooo tired I cannot function  – people say to me, oh you just need a good nights sleep – WHAT! Hello again, slap yourself silly! It is one of the most common symptoms of MS – fatigue – It hits at all times of the day – does not matter if I got 12 hours of sleep.

Another one I just love this one — I have met many people in my life time. It never fails me — I always get that one person “OH, I KNOW SOMEONE WHO HAS MS!” – PULEEZE people – MS does not come in one size fits all (words from the article – OMG I love that) or shape. Everyone has different symptoms, everyone has different problems. Just because you are feeling tingling on your feet does not mean you have MS. You have to be diagnosed by a neurologist and an MRI scan to determine you officially have MS. I have people come up to me all the damn time – I am dizzy — well so am I, but I don’t announce it to every single person I meet, I love this one – I am just like you! I have everything you have – ummm no I don’t think so – if you only knew what has been going on with me the last 3 months and last 3 weeks, there is no comparison –

Last but not least – “ARE YOU SURE YOU HAVE MS?” – Well, Golly Ms Molly – if I wasn’t sure I would not be talking about it now would I? Yes I have MS but I don’t have to have a detailed explanations as to how I got it now do I? Do I need to have a license to have MS – to have a validated excuse to talk about it? – Hmmm – there’s a thought. There is nothing more aggravating when someone says that to me, what a way to throw me off  balance and think – are you smart or dumb?

I just think by reading this article, it has really hit home. I think of all the years I have had MS and the explanations I have had to give to people even my own mother didn’t understand what the disease was. All she saw was how fat I was! I know that people mean well, they are concerned and for those of you who have taken the time to see how I am doing – I really do appreciate that, just not the 1,000 questions.

Today is October 4, 2009 there has been no improvement in how I am feeling. I think I have gone beyond frustration. I have given up and have accepted that I may always have these feelings of tingling and achy muscles. The weather has changed from warm sunny days to cold crisp fall days. Fall changes to winter and then a whole new set of pain pops up. I feel like I am sitting on a bag of ice for the next 6 months. Then spring comes and I begin to thaw out. Then I deal with summer and people’s complaints on the air conditioning – ohhhh it’s so cold! Too bad! Put on a sweater. You can warm up but I can’t control my body temperature.  Where can I go so I feel completely normal? I wish I can find a place that stays 70 degrees all year round and people do not complain about the temperatures. . I think I would be a much happier person. I was in my facebook the other day and all I saw was people complaining about how coolllllddddd it is outside. The temperature is 50 to 60 degrees. Puhleeze that is not cold. Cold is 20 and 30’s. Wake up and smell the apple cider!

I got a comment from an old friend, Myra – she seems to not be doing ok. I wonder if I am at that stage too with the pain of muscles and tingling. Because right now it has been over 2 months I have not seen any kind of improvement. What does this mean? Myra has decided to see her neurologist after all this time of trying out homopathic medicine. Maybe the homopathic way is not the way to go? I will have to see what see what she has to say. I am wondering to myself because MS is such a mysterious disease, there really is nothing anybody can do. Everyone suffers their own hell, their own pain. We just have to decide if we want the MS to control our life. I for one do not want to do that. MS is not going to control my life, I will not succumb to it. I need to stay strong mentally and physically so that I can do all the things I want to do.

I am leaving my blog today with this comment

Be Strong!

Have you ever wondered if things that happen in your life can trigger MS attacks? I happen to think so. I think that when things that are going on at work, home or even personally can trigger major attacks. What I mean by attacks to me are things like — I am so tired, I cannot do anything – all I want to do is sleep. My body hurts – tingles more – my legs tingle all the time now. Sometimes my hands do it too. So, what does this all  mean? I have no clue. Could be stress-related, could be MS related, could be diabetes related. I become so frustrated because when I go to the doctor, they cannot really pinpoint what it is that is causing these things. Often, I leave my physician’s office very frustrated and land up calling my doctor names like Dr. Idiot, ass-wipe and you have a degree and you were no help! Another annoying frustrating thing is people tell me you should go to the doctor and get some medicine, what medicine!?!? There is no medicine to take to make this go away!! Argh! I don’t know what is more frustrating to me is when people – yes I know they mean well, but – shut up! If you don’t know – don’t say anything. It is so much better that way.

Yesterday was a prime example – of is it the MS or is it because of something else. However, I did have a bad breakfast the day before that caused me to become ill. But after becoming violently ill, my body began to hurt. So was the getting sick over bad food the cause of my body becoming increasingly in pain? Now it is 6:03 am this morning – my arms and legs still hurt. Interesting. So is there a theory to all of this, I don’t think so, I think that I will always have these questions that people who have MS ask me. People always ask me, yes I have MS, my doctor did not tell me much, I had to do research and gather literature to find out what MS is, what I am going to go through etc. Then those that talk to me because they have MS too often say, but you have it, and it is so much better that I read or talk to someone who actually has the disease.  

Sometimes I experience other things like when I am reading for a while and look up from a book, I become dizzy. Is it because I had my head bent a certain way that caused my body to react a different way? Other things will be like I need to climb on a chair to get something from the top shelf. Once I’m up there, how do I get back down – my body has frozen and cannot move – so…… is it the MS balance thing that is causing me to be frozen standing on a chair for a few minutes willing my body to step down carefully? One time I was waking up from sleeping a full 6 hours with no wakeys – I had to lay in bed for a few minutes because I wasn’t sure I could get up. Is it because I was not moving for a long time my body decides to be log and cannot move but have to roll out of bed to try and move towards the bathroom? When I ask my doctor these things – he says I don’t know, maybe. Hence, Dr. Idiot – another useless thing he says to me.

Anyway – enough thinking things to death sometimes – and focus on the here and now. Today is a new day. I am feeling so much better than yesterday minus the stupid tingling and buzzing my body goes through. I am traveling today so hopefully I will enjoy my day.

Be confident!

I am so impatient! It has been almost a month now and I still do not feel like myself. I still feel tired and my  hands and feet are numb. I have the tingling all over. Very nerve-wracking. I think my fingers are hitting the keys on my keyboard and lo and behold nothing is coming out. Which means my touch sensation is low. I have to tell myself to press the keys harder so that the letters type out on the screen. What does this mean?

Could this mean I have to really monitor myself for the next few weeks just to see if there is any changes? Every day I have to put a huge smile on my face, listen to other people complain about their problems. God! I have to stop comparing myself to the people who think that because they havent gotten their daily dose of coffee that morning their world has completely stopped! Come on people – I would gladly trade you any day. You take this body the pain, the stiffness, the joints locking up, the throbbing tingly shocks that shoot through your body for no reason and I will just take the no coffee for the day problem. Deal?

I love the one where the electric shock shoots down my legs and they jerk for no reason. Wakes me up from a sound sleep. I want to punch someone!

Ok, enough griping. Get with the program Pam. Be strong,  Be an inspiration,  Be pain-free, Be free!

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?