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.

Lesa

It really hit me, to understand about different foods. Because two weeks go I felt back normal then my body felt funny, heavy and numb so I realized it is worth to eat the right diet foods. So, I do this again  (it is not too late )  will go back to strict food diet again.  🙂  Don read the book about healing MS  and he was helping me a lot too to understand and be patient and will take few months to get improve maybe more  until one year – it depends for people like me.

Lesa

I received this email from one of my fellow MS friends, and it is interesting to read her comments about food. Kind of renews my faith in eating organic, healthy foods. I think after other testimonials, I will still continue on my path of research — always trying to find what is the best source of treatment and relief for my MS.

Be well and strong!

As we all know from reading my blogs, that I have always felt and expressed my opinon strongly about food playing such a huge role in our health. Some have disagreed with  me even though this thoughts are my opinions and some have agreed with me – even people who do not suffer from MS but from other issues such as thyroid, diabetes, Parkinson’s disease just to name a few agree with me 100%.

After a few blogs later, some have expressed their opinions strongly to me about what they felt about wanting to eat anything and everything even though there are studies out there that show different kinds of results. A few weeks or months go by a light bulb goes off and those people that have disagreed with me all of a sudden see that food can make a difference in how we feel everyday. 

Simple thing to remember – if we gorge on chocolate chip cookies and eat 10 or 12 of them, our body is going to react to that — we are either going to have a sugar shock or we are going to have a huge stomache. Same concept with the types of foods that we put in our bodies causes either 1 or 2 things — a food reaction or you are fine.

Figuring out what is compatiable with our bodies is a work in progress. Unfortuantely for us who have MS it is always a guessing game. I am still guessing on what is good for me or not based on my food journals that I keep. I cannot have it any other way, simply because I know deep down inside how bad my body reacts to something that I should not eat.

My favorite thing to eat is meatloaf, mashed potatoes and corn or green beans. I cannot eat meatloaf – it is beef – my body reacts so badly to beef I cannot function for 2 or 3 days. My other favorite thing to eat is pork roast or roast beef – same idea. I crave it but I always tell myself – do you want to walk and play outside or do you want to stay inside and watch tv and sleep for the next 2 to 3 days. My inner strength wins and I get to play and go shopping and have lunch with my friends.

I realize now we have choices. Those choices is what makes us healthy strong and happy.

I guess one of the biggest keys  in having MS is being tired all the time. Ever since I started my job, I have been more tired than before. Between a full time job and going to school full time, I crave sleep a lot more now! LOL. I applaud all those people that are out there trying to better themselves while working full time. I know now how you all feel.

Well, let’s see what’s been going on, without sounding like a mother hen, my support group meeting did not happen this month. So disapointing! We all need support and getting together once a month for 2 hours is really nothing. I know that when I get together with people I feel so much better after, its like a renewed faith, the energizer bunny almost. Having MS sucks that is the bottom line. We are restricted in so many things, and it is important to be able to get the support we need from others so that we do not become depressed and withdrawn.

Hopefully, things will pick up soon and everyone wakes up and smells the coffee – that this is important to be able to share ideas and feelings about things – it could help the next person.

Here is to hoping everyone has a great thanksgiving and that we are all healthy and full of energy!

Pam, Myra and Lesa still going strong

The group meeting went very well this past Saturday, October 18th. I’m sorry that Katie could not join us as she had prior commitments. I am hoping soon eventually she will be able to meet with us. There is so much support and information to share with each other, everyone benefits.

We have agreed on several things, The central location for the meetings will be somewhere in Howell. We will try it out for a few times, and if it does not work out we will change the meeting place. I will be doing some research to see where we can all meet in Howell.

The 2nd thing we talked about was a group name. We have officially decided that the group name is going to be “Living it Up with MS”. IT’S OFFICIAL.

Everyone agreed that the 2nd Saturday of every month 11:30 am seemed to be the best logical meeting time and date.  We also talked about maybe trying out TeaVana in Troy Michigan Somerset Mall on November 8th. We will just play it by ear and see how everyone is doing. I brought brochures for everyone to read up on. KUDO’s to Heather Wilson for going to the Somerset Mall for me and gathering all the information. Thank you Heather!

Thank you Lori Baar for providing transporation for Lesa. I am hoping that Lesa’s husband will come to one of our meetings, it is important that he shares the same thoughts and feelings Lesa is going through right now with her MS. The family support needs to be there, still working on that family unit support. Lesa had some major set backs with food issues. I think that now her family realizes that she cannot eat their food and needs to eat organic, gluten, dairy and yeast free things. Lesa shared her latest food discovery, that she cannot eat eggs. So now that makes it the 4 things she has to watch out for in her diet.

Myra was feeling so-so. Still having some major issues with tingling. She is working it out with her doctor. Hopefully they will pinpoint what exactly is the problem and what is causing the tingling.

I am doing ok other than fighting the fatigue. I have started working again. I am trying it out for 3 months to see if I can handle the full time load and school. If things get bad I will leave work and stick with school as we all know that I have waited so long, so many disapointments and years to start with school again, and I am not about to give that up.

My sister brought some really cool information to the meeting. I will post this information on another post because I want to keep it the focal point. So check out my next post after you read this one.