MS & Parenting....

Last week I was reading my copy of Momentum, quarterly magazine by the National MS Society (NMSS). It can be read online as well: 
http://www.nationalmssociety.org/multimedia-library/momentum-magazine/momentum-fall-2010/index.aspx


I got very excited when I saw that there was a survey about what it is like to be a parent with MS. I jumped online and pulled up the site address, which is nationalMSsociety.org/parentwithMS, and began filling out the survey. As I continued through the survey, I became disappointed that the questions where mostly directed to people with MS that were deciding to have children AFTER diagnosis along with new parents....neither of which applies to me. I was hoping the survey would include questions of what it is actually like being a parent with MS. Questions such as "Which of your symptoms do you feel has the most impact when parenting your kid(s)?" or "What kind of tools have you found to be the most helpful in talking with your kid(s) about your MS?", etc.


My disappoinmtent in this survey prompted me to search the web for tools that help parents deal with MS & parenting. 


What I found:
1. The NMSS has a quarterly magazine FOR KIDS and it can be mailed to each child that you have and can be found online: http://www.nationalmssociety.org/multimedia-library/kids-keep-smyelin/index.aspx
2. The NMSS has a 15 minute video called "Timmy's Journey to Understanding MS" that can be obtained from your local NMSS chapter, info on their website: http://www.nationalmssociety.org/multimedia-library/videos--dvds/timmy’s-journey-to-understanding-ms/index.aspx
3. A book called Multiple Sclerosis: A Guide for Families by Rosalind C. Kalib, Ph.D., description on the NMSS site: http://www.nationalmssociety.org/multimedia-library/books/a-guide-for-families/index.aspx
4. Two websites to support parents w/ MS & have forums: Moms with MS http://www.momswithms.com/ and Parenting With MS http://www.parentingwithms.com/index.html
5. Web Resources from the Multiple Sclerosis Resource Centre: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1077 (Check out the booklet you can download, it is awesome)
6. Video that gives advice & talks about parenting with MS: http://www.youtube.com/watch?v=V93TG_0LJiA


Two years ago when I did a search online, I didn't find as many things so I'm glad to see that there is more available. However, I'm still disappointment that there isn't even more...especially since MS is considered a "young disease".


For me, my children and I have spent the last two years trying to find the right balance as a family for all of us as we have dealt with my diagnosis. Our situation is different than many....we only have each other....no family or friends that are able to help on a regular basis. This leaves my kids to be the ones to do most of the chores. I do the dishes, but we have a chart that lists the chores that they have. Each child has two rooms and their bedroom to be responsible for. Plus, they have learned to do the laundry since stairs are a big issue for me. Over the last 6 months, they have expressed frustration with chores, especially laundry. Last weekend we sat down as a family and had a discussion about my MS and the fact that they are important members of my care team. I hope that the discussion was helpful...even though it didn't seem like it when I asked them to get their chores done afterwards. I also reminded them that they earn points toward reward day (special day to redeem their points that we have every 3 months or so) for doing their chores. However, this reminder didn't seem to generate the excitement toward chores that I was hoping for. This has got me thinking....I am going to have to come up with some creative ways to help them not get as frustrated with the increased responsibility they have because of my MS....before it becomes a major issue. I did find something called "MS Journey Club" in one of the issues of Keep S'myelin and it sounded perfect....a support group for kids & families.Ugh...more disappointment...I called the NMSS and was told that the "MS Journey Club" is something that each chapter decides to do and none of them are doing it right now....grrrr! I think it would be extremely helpful if kids had a place to have fun & get support...I am going to be calling my local chapter to find out why it isn't being held and see if there is any way it could be....if there is enough interest.


Well, that is about all I have on MS & Parenting for today....

Continued journey with MS...

I just read through my posts and realized that I hadn't posted much about my experience with MS...which is one of the main reasons for this blog....

I have previously blogged about it (before I switched my blog IDs) and think it best if anyone is interested in reading about my story, etc. to check it out at http://loveoftwins143.blogspot.com/

As I continue this blog, I want anyone reading to understand this:

I am just one of 2.5 million people around the world that lives with this monster...MS...and I am sharing my opinions, thoughts and story. I have no medical background....just an interest & newly developed passion. I am blunt, honest, opinionated and sarcastic....please read with an open mind.

Thanks for reading! :)

Ahhhh....life!

In the last few weeks I have had some serious ups and serious downs. I have had some great successes AND failures along the way....


Hmmm....where to begin?!


I have always believed that EVERYTHING happens for a reason. No one may ever understand the specific reason....but they do happen for a reason. The last few weeks I have been on an emotional roller coaster and began some self reflection. Normally I welcome these phases in life where I get a chance to look inside myself and start thinking about who I am, etc. However, this particular phase....I felt tossed into a whirlwind of major obstacles and was rather pissed off about it.


My life has always had "more than your fair share" of obstacles. Therefore, I'm not extremely surprised that I continue to have them....I guess I am just tired of having so many. Now that I look back....it has been pretty much non-stop for the last two months. Our obstacles range from the computer speakers dying to being on the verge of homelessness. For the first time in my life....I can truly say that I have learned the meaning of despair (to lose all hope or confidence, ty Merriam Webster online lol). Many things are left unfixed....but (thanks to a dear & amazing friend)....we are not homeless!


I have found myself questioning WHY in the last few months...as I'm sure many of us do in difficult times. I had thoughts such as - "I am a good person, why is this happening to me?" or "My kids don't deserve this, why is this happening to them?" Well, I have no answers to either question. However, we have survived and are learning things about ourselves and each other. For example, I have learned that the lessons that I am learning have much to do with self management....things like managing finances, managing time, managing my own will power, etc. I also had the realization that my children were born to me for a reason....it is part of their path so no matter how much I feel they don't deserve the things that are happening....I know that it is part of their journey as well.


For now, I must end this blog post because I have a headache and bedtime is near. However, I will close with one particular statement that has been on my mind through all of this....


"Life was never promised to be easy....the only promise made was that it would be worth it!"


G'night :)

Orange...

Orange has never been on my top list of colors. I'm more of a purple & blue kind of lady...


However, I have grown fond of the color orange in the last few years because it symbolizes finding a cure for MS & MS awareness....just like pink is the color for breast cancer awareness.


I have an ORANGE magnetic support ribbon on my car and an ORANGE support ribbon key chain. Last month my daughter made me an ORANGE braided support bracelet. So....I decided to paint my nails...you guessed it....ORANGE. I figured...why not?! I'm not shy about having MS...so why not start incorporating ORANGE into everything possible in order to create MS awareness and make people curious. I don't care if people stare or think I'm a bit odd...because quite frankly...being a bit odd is fun! LOL


Thinking about all the possibilities of what to make orange got my mind racing with ideas...
I could buy duct tape & turn my cane orange...and then I could go to the craft store and get letter stickers and put "CURE MS" down the front.
I could buy some bright orange shirts that I've seen at Walmart and start wearing them. (also have started thinking about phrases I could put on t-shirts like these)
I could keep re-painting my nails orange...would need to buy new polish, but that is cheap LOL
I could pick up orange bandannas for cheap and write "CURE MS" w/ sharpie on the part that covers my forehead.
I could get a 2nd magnetic support ribbon for the other side of my car.
I could get another support ribbon key chain and hang it from the handle of my cane. (once it is orange of course)
I could get some white t-shirts and tie-dye them orange. (because tie-dye is sooo hippie.....and sooo me! LOL)
I could have my daughter make a bunch more orange support bracelets. (the rubber support bracelets are so common and break easily....I know because I have large-ish wrists and have broken 3 already...grrr)
Not sure about this one....remember those old friendship bracelets?! I thought it'd be cool to figure out a way to them with the orange support ribbon in them...not sure if there is a pattern for it....but I'm sure it wouldn't be that much harder than the heart pattern that I've seen on youtube LOL


Hmmm....I'm sure I could come up with more ideas, but those are the ones I have come up with so far. I do like the idea of incorporating orange into pretty much everything....that is part of the reason the background of this page is orange...at least mostly orange ;)

Creativity...

Why is it that creativity hits in the middle of the night?! Could it be because everything is sooo very quiet?! 
Last night I tried to go to bed...tossed & turned for a good hour and got frustrated. My mind was racing with thoughts and ideas about books I could write, paintings I could do, ways to educate others about MS and many various other things. I have had this one thought for years...creating a place called "Hope Haven" and while the purpose has changed through the years...the name hasn't. However, last night I was thinking about it being a safe place...either online or a physical location, maybe both...for people with MS & their families. I decided it would be a good idea to find out if the name had already been taken. I put it on my "to-do" list in my mind and tried to move on to some much needed sleep. No matter what I did, something was bothering me....I knew that with my short-term memory being a thing of the past that I would probably forget about it if I fell asleep. I had to get up and go to the computer and search the name. I found that there are actually a handful of websites with the "Hope Haven" name...CRAP! Now what?! I guess it will be more research...I am sure there is a way to still use the name I want...just not sure how yet. At least I was able to get to sleep after I satisfied my need to find out. Plus, it doesn't really matter right now anyway because I am in no position...financial or otherwise to start some kind of organization...no matter how much passion and creativity I have. I had to giggle at myself because I have an entrepreneurial brain, always think of good ideas for businesses or organizations, but have never had the means to make them happen. Someday.....maybe LOL