DeFazio

DeFazio responded to my letter that I wrote about the NIH and CDMRP.  It's probably not personal, but I'm glad I got a response

Dear Ms. Wells:

 

Thank you for contacting me in support of funding the National Institute of Health (NIH).  I appreciate hearing from you and I am in complete agreement. 

 

During my entire time in Congress I have always fought for proper levels of NIH funding.  Most recently I joined Representative Markey in sending a letter to the appropriations committee insisting that the NIH be adequately funded at a level of at least $32 billion in any final budget bill this year. 

 

You can be sure that during the continuing budget debates this year I will continue to fight for the preservation of common-sense programs like NIH research.  Thanks again for writing and please keep in touch.  

 

 

Sincerely,
Rep. Peter DeFazio
Fourth District, OREGON

Biogen Idec congratulates me on 1 year of Tysabri

I get tons of Biogen Idec.  Most of them are about conference calls with other Tysabri users talking about how wonderful it is.  Actually, I only assume it's a marketing ploy as I have not actually taken the time to call in.   This email mostly talked about being on Tysabri for 1-year:

Wondering what to expect after your first year? We've got the answers you need. 

It's been a year since you started taking TYSABRI. As you reach this important milestone in your treatment journey, you may have some questions about where you are now - and what you can expect moving forward. We've got the answers you need to stay on track:

Q: I haven't had a relapse recently. Does this mean I may stop taking TYSABRI?

A: Even if it's been awhile since you've experienced a relapse, it's still important to keep taking TYSABRI as prescribed by your doctor. 

WOHOO!  Love me some drugs!

Q: What should I talk to my doctor about at my 1-year appointment? 

A: Your yearly doctor's appointment is a good time to ask any questions or concerns you may have about your MS. Think of what you'd like to discuss and take a notebook to write down key points you want to remember. It's also a good opportunity to discuss your TYSABRI treatment, so be sure to talk to your doctor about how TYSABRI is working for you. 

My next appointment isn't until June.

Q: What do I need to know about the risk of PML?

A: It's important to talk to your doctor about a rare brain infection called progressive multifocal leukoencephalopathy (PML). TYSABRI increases a patient's chances of getting PML, although it usually occurs in people with weakened immune systems. The risk of PML increases with a longer period of treatment or if you have received medicines that can weaken your immune system prior to starting TYSABRI.

As you evaluate your treatment, it is important to continue to weigh the benefits and risks. Keep in mind that only you and your doctor can make the decision that's best for you. That's why it's important to get the conversation started. 

I like being reminded that this thing may kill me.  I'll be honest, it's worth the risk because even if I do get PML because dying sounds much better than living bound to a wheelchair, unable to see, unable to talk, no appetite...and going crazy.  I feel MUCH better now.

I have one more year of Tysabri.  It's bizarre that the first 12 months have already flown by.  My relapse last year was a nightmare. 

   

What a fun time with the 2012 MS Blog-a-thon

Blog-a-thons are fun.  A lot of work, but fun.  Ok it’s not THAT much work to ramble on and on, it’s just a lot of work to remember to write an entry.  I am proud that I have an entry for every day in March!  Go me.  
I keep saying I want to write a book about my ordeal, but have been having difficulty organizing my thoughts.   These blog entries weren’t well written by any means, but the information is out there.  It’s possible that I will take what is written here and expand on it if I ever get that book written.  It might be funny.  It might just end up in a bargain bin.  If it’s published and one person reads and it gets something from it, then go me.

It has been an interesting journey.  Sure there were entries that were rushed just to get something out there, but there were others that had actual reflection in them.  I touched some areas that I haven’t even talked about yet.  The entry about my mom was the hardest, but I knew it had to be written since she would be mentioned throughout the blog-a-thon when I touched on various topics.  A lot of the entries were therapeutic and even addresses things outside of MS, like why I don’t date...period.  It’s not really an MS thing, but the topic comes up a lot.  

When looking for things to write about, I researched more information about MS and I became more informed about what it’s doing to me exactly and what is happening on the research front.  Knowledge of the disease grew and activism was heightened. I became more active with the NMSS and attended more events.  I’m not certain I would have gone to the local support group had I not needed material to write about. This was a great growing process for me and it’s possible that it will be a yearly event during MS Awareness Month. 

Backup MS Walk Speaker

Having volunteered to help out with the MS Walk this year, I was charged with helping to find a speaker for the event.

• Craig Robinson, OSU Basketball Coach, brother to the first lady and has a father with MS....not available.
• Pat Casey, OSU Baseball Coach and sister has MS....not available.
• Michael, nice guy with MS and a great story about doing the MS Bike Ride in spite of having MS...waiting to hear back from him.

I updated the committee with my progress and it has been suggested that if Michael can't be the speaker, that I should.  I was a bit floored and honored. 

I have NO idea what the heck I would talk about and would probably just be awkward and tell bad jokes.  Maybe I should prepare something just in case this guy doesn't want to do it. 

If I do this, I'll be sure to write my talk here to share with the world.  It would be super entertaining no doubt.

OHSU MS Luncheon

There are so many resources for people with MS.  The Oregon Health & Science University has a Multiple Sclerosis Center where they do research and provide services for local people battling the disease.  Today I had the opportunity to attend a luncheon in Corvallis where OHSU MS specialist, Dr. Rebecca Spain updated the group on various aspects of the disease.  I got to sit with some of the people I met at the Corvallis Support Group.  

It was very informative!!!

I learned about some historical aspects of the disease that I hadn’t even thought about researching but plan to look up more on the first recorded cases and therapies.  We’ve come a long way and there’s still more to unearth.

Dr. Rebecca Spain talked about some genetic markers of the disease and that was my favorite part.  Being bitter about having been told at 13 when my mom was diagnosed that there was no indications that the disease is hereditary, I wanted to learn more.  Latest research does show linkages between close family members like parents, siblings and children.I had always wondered if there was more studies on neurodegenerative diseases like alzheimer’s, since my Mamaw is inflicted by that, but Dr. Spain said no connections had been discovered.  There has been information linked to other autoimmune diseases in family history though.  It felt good to finally have that question answered.  

She also went over the latest news on current medications and possible research programs we could join.  Most of the programs she talked about didn’t suit me, but the one I am most interested in, Mechanisms of Imbalance and Falls in Multiple Sclerosis, has criteria that I fit.  I plan on calling them to join that study as my balance is something that bothers me most.  I really hope I can do it.

I look forward to learning more about the science of my disease and the research that scientists are currently doing.  It gives me hope and comfort in knowing that there are so many people fighting for a cure. 

ADA Compliant

The Interim Dean wants to renovate the office and it needs it.  He asked all of us in the office for input.  When I took a look around the office, I noticed things needed to be considered for someone with a handicap.  The idea of cubicles started my mind to think about inclusiveness as I thought about how hard it would be to navigate a wheelchair in a cubicle if I ever had to be in one again.

The stairs in our office are quite dangerous.  I do go up and down them frequently to fill up my water bottle, and the fact that they lack handrails is a bit scary.  Even though there are only three steps, I’m always afraid I’m going to fall.  I’ve always thought there should be a hand rail.

My need for the new renovations to consider the handicap lead to action.  I met with the Americans with Disabilities Act (ADA) Construction Manager to discuss needs and have started the process to get handrails installed.

He pointed out other things that need to be upgraded for inclusiveness:

• Not all doors are wide enough for a wheelchair
• The receptionist desk is too tall for someone in a wheelchair
• The sink in the kitchenette needs to be lowered

It was great to be able to talk to the construction manager to learn about what the proper sizes of things should be.  I’m really looking forward to this process as I am sure there is more that needs to be done.  There is even funding available to ensure our office is suitable for all.  

If you’re living with a disability, be sure to contact your HR representative to make sure your work environment is ADA compliant. It’ll make your life much easier at work!

Helping out

I’m looking forward to being more involved with the National MS Society. It’ll give me a chance to really help people with MS.  I don’t know how I can help, but I want to open myself and be available for assisting in anyway I can.  Maybe it’s providing support for events or just telling my story for support. There has to be ways I can help people whether it’s accessing resources or talking about therapies. Just being available to listen to someone who is newly diagnosed could be helpful.  

I am by no means an expert, but I did grow up with it since my mother was diagnosed at age 13. Having experience as the child of someone with MS could help someone talk to their children about the disease and how it affects the family. Then when I was older, I took on responsibilities to help out my mom when necessary.  Having insight as a caregiver could be very helpful too.

Now that I am living with MS myself, I have advice and can share how I cope.  I can talk about my experience and the resources i turn to for help.  Maybe I can provide humor and support during bleak times.

It may be bold to think that little old me can offer anything, but I want to do what I can. Having MS isn’t the greatest, but I can make the most of it. It’s possible that I was supposed to get this disease in order to help others make it through the tough times. 

ACTION ALERT!

I received an ACTION ALERT today from the NMSS.  It is below:
 

Up to 25% of people living with multiple sclerosis (MS) will require long-term care services at some point. A recent National Alliance for Caregiving (NAC) survey of individuals supporting people living with MS shows that on average, caregivers spend 24 hours per week providing care. Caregivers enable people living with MS to remain at home and independent, and to avoid premature admission to more expensive institutional facilities. These are extremely positive benefits, but caregiving can be stressful and take its own toll. Sixty-four percent of caregivers surveyed were emotionally drained, 32% suffered from depression, 25% could not focus at work, and 22% have lost a job due to caregiving responsibilities. Sixty-six percent indicated that respite care—professional short-term help—would allow their care recipient to live at home longer.

The federal Lifespan Respite Care Program exists to better coordinate and deliver respite services to our nation’s more than 60 million family caregivers –including those caring for people with MS. Since the program’s start in 2006, it has been woefully underfunded. This year, Senators Robert P. Casey, Jr. (PA), Olympia Snowe (ME), and Richard Blumenthal (CT) have circulated a bipartisan “Dear Colleague letter” on Capitol Hill to help ensure that the Lifespan Respite Care Program receives adequate funding in Fiscal Year 2013. Click here to send an email to your U.S. Senators and ask them to sign on to this important letter. We only have two days to gather signatures for this letter, so be sure to email your Senators today

Working Gal

One of my biggest fears is not being able to work.  Actually, I think losing my independence is my biggest fear. Working makes me feel independent.  I think I’m seeing a theme here.  I don’t need a man.  I am my own woman.  Rosie the Riveter type stuff...

I can do it!

When I was at the MS support group I was a bit scared after hearing how many people had quit their jobs because the various symptoms made it difficult for them.  I didn’t ask the specifics like what exactly caused them to quit or how they are living with no income.  These are answers I don’t want because I plan to keep on working.  My mother worked with MS.  She loved her job and even if she lived until she was 80, she’d be working.  She always said she’d be an awesome Walmart Greeter.  

Like my mother, I can’t just succomb to the disease and let it take over what I love.  Sure my job drives me crazy some days, but what job doesn’t do that?  I like having a purpose.  I like contributing to society.  I like that steady paycheck too.

To continue having a steady paycheck I am open with my colleagues.  I know my limitations and have swallowed some pride to tell them where I need help.  My memory sucks.  It has been trial and error to figure out ways to remember the tasks set before me.  I’ve had to tell people to list  EXACTLy what they need in a linear fashion.  Things were a bit rocky when I didn’t know what I wanted or needed, but open discussions have made things easier.  We have a system, and are now a great team.  

Human Resources is a very helpful resource.  When I was out due to my relapse they called and checked on me frequently to help me with anything I needed to keep my job.  Then, when I went back to work, they made sure I had everything I needed to acclimate back into the job. 

Distractions have started to cause problems for me.  Loud noises and various people parading around my desk make it difficult to get things done.  I know a lot of people that have similar issues, but with my cognitive issues, I need to be able to focus.  I actually went into work today because no one would be there.  With the lack of noises and distractions, I have gotten so much done and was able to set up my work week.  I plan on doing this again since the next few months are going to be really hectic.  

If I continue to find ways to work where I can focus I can overcome cognitive issues.  If I am sure to not overdo it, I won’t get tired as easily.  Just being aware of my limitations and finding ways to deal with them and overcome them, I feel that I will be a working girl for a very long time. 

 

I have problems with this...can you guess what?

Tired

I get tired easily and it’s not fun.  Sometimes it feels as if I’m an old lady when I don’t want to go out.  Fridays are hard.  I work all week and then push to go out with friends that evening.  By 11pm I am exhausted, but I’m having so much fun with friends, that I don’t want to quit.  I push through.

Here it is Saturday, and I am EXHAUSTED.  I didn’t feel like going to Eugene to watch rugby.  (Also, gas is EXPENSIVE and it’s hard to watch and not play.) It’s a beautiful day and I don’t want to go out and enjoy it.  Lying in bed watching netflix sounds like a MUCH better plan.  There have been invitations to go out tonight, but I turned them down.  

I’m being a lazy bum.

There’s not really anything wrong with that.  Ok, there’s a LOT wrong with that.  Life is out there and I really want to live it, but having a Buffy Netflix-a-thon sounds so much cooler.  I know I need to rest, but I’d rather make better memories. It’s almost as if my weekend has been wasted.

What lessons do I continue to NOT learn?  I have MS, and well, I’m older.  To really enjoy my weekend, I need to space out my activities as to not use up all my spoons.

Spoons?  Christine Miserandino has Lupus and she too has to really think about her activities as to not use up all her energy. The story has been passed around in many circles and as it is one of the greatest ways to explain to the “healthy” how we need to save our energy.

1 Year of Tysabri

I started my Tysabri in March of 2011 and am actually getting my 13th dose as I type this. I’ve really come a long way since last March. Not only have I busted out of rehab, but also a wheelchair. The funniest thing is that the first time I got Tysabri, I wouldn’t move my arm  for fear that the needle would fall out of my arm or that I would end up ripping it out. Now I wave my arm around and am even typing on the computer. This is something I wouldn’t have done this time last year. I was such a needle scaredy cat. Just used to it now!

Hanging out getting my infusion

This is the halfway point. I will be on Tysabri for a total of 24 months. The nurses at Samaritan Ambulatory Services in Corvallis are awesome, but I’ll be glad when I don’t have to do this anymore. Being a pin cushion isn’t exactly fun.

I come in every 4 weeks for my treatment. A nurse asks me all kinds of questions to make sure I’m not having any problems with the Tysabri and to monitor whether or not it is causing me any problems. Then, I get stuck in the arm with a needle. The left arm is usually the best arm, but I’ve been known to have my right arm stuck. For an hour the medicine drips through me and then when it’s done, I have an hour of observation. During the 2 hours, I have my blood pressure checked every 15 minutes. I hate having my arm squeezed.

My IV pump with the Tysabri

It’s a pretty relaxing two hours. Today is actually the first time I have brought my computer with me. I had to since I didn’t want to fall behind on my blog. I have my fans to consider. Mostly I just sit and watch netflix on my phone to help pass the time.

I have to be mindful of the four week time frame. I can’t go beyond a window of two days before and two days after. When planning my trip back to Ohio I have to be sure that it doesn’t coincide with my infusion. If all goes to plan, I should be fine to go back to Ohio at the planned time.

Who knows what my treatment will be after I’m done with Tysabri. There could be totally different medications in a year. I’m not too optimistic that there will be a cure as there has to be so many drug trials, but it’s nice to think that there may be a cure. I can only hope.  

House M.D. and MS

House M.D. is one of my favorite shows.  It’s so funny and the character says things I wish I had the balls to say.  I'm practically a doctor because I watch that and Grey's Anatomy.  When I was getting a spinal tap during my first hospital stay I asked the doctor if they were looking to see if my spinal fluid was cloudy.  If it was cloudy, that would suggest I had Meningitis.  My doctor thought that was very astute of me. When I said it was because I watched House, he just rolled his eyes.

So I’m not really a medical doctor, but I still do enjoy trying to figure out the puzzles with the minimal medical knowledge I have.  When the team brings up MS as a possible diagnosis, I can either agree or disagree with the symptoms presented.  I can also predict what their next tests will be.  

They give the patient a spinal tap.  Since I’ve had one, I know what they  are looking for.  If they can rule out certain things from the sample, I know they will go to the MRI.  That’s what happened with me.  The MRI took a picture of my brain and lesions were all over my giant brain.  It never gets to that point on House.  Some other crazy symptoms appears causing House and his team to look elsewhere.

The Physician adviser for House, Dr. Lisa Sanders, actually spoke at Oregon State University recently.  I couldn’t go, but I wish I had so I could tell her my show idea.  Sexy person with MS gets some crazy disease but people just tell her it’s her MS.  I could play the Sexy MS Patient.  There would need to be a romantic scene with Hugh Laurie. 

1 Month until the NMSS Walk

There is one month until the walk for the National MS Society in Corvallis, OR. I have met my goal already and I am the top fundraiser. A BIG thanks to my Dayton Area Rugby Club friends who supported me all the way back in Ohio. You guys are amazing! My Eugene Reign Rugger loves are awesome too. They have donated and raised awareness.  Rugby people are some of the greatest people ever.

I even have some awesome friends that I have made through the interwebs that have offered their support. I know some pretty amazing people and am truly grateful for their awesomeness! I don’t think I deserve to have such beaming lights of greatness in my life!

There’s still time to donate and to join my team!

Dating with MS

I don’t know why I’m blogging about this.  I don’t date.  It just keeps coming up though. I’m single and people wonder why.  I’m smart.  I’m funny.  I’m good looking.  I do not have self esteem problems.  I’m a catch.  I just don’t make finding a mate a priority in my life.  My friends are awesome and provide me with ample companionship.  The cats are nice too and I’m thinking of plotting my Crazy Cat Lady future by adding more felines to the family. Don’t worry Steve and Kevin.  I’ll wait until I live alone in a creepy old house so that I may scare the little children.

This is the attitude I pretty much take, but then I see a cute little couple and think I’d like to have somebody to push me around in my tricked out wheelchair some day.  

A concerted effort will be made to make myself emotionally available to another human being.  It’s a frightening thought, but I’m up for the challenge.  I’ll put myself out there.  I have done that online dating thing because I know people for which it worked out really well. I hated it.  The method was nice, but well, I hate dating.  I met interesting people...some I even still talk to, but haven’t really tried to do much more.  Once again...not my thing.  

People ask me what I’m looking for in a partner.  Rich and on the verge of death.  I kid.  I want young, virile and dumb as a box of rocks...and rich.  I can’t say what I want as I don’t think it should come down to a check-off list.  Someone who can put up with me.  I think that is important, but mostly doesn’t care that I’m damaged goods.  

If someone is looking for a running buddy or a skiing partner, they better look in a different direction.  I’m not always going to be well enough to do these things.  Also, I hate running and have no desire to strap planks to my feet and go flying down a mountainside. Even sledding scares the bejesus out of me.  Sharing interests with a partner is important.  I’m not saying I want to spend every freaking minute with someone, but having something to do that appeals to both is healthy for a relationship. It’s frustrating that I can’t do the things I love, but add wanting to explore new territory with someone, and it gets more frustrating.

I’ve read a lot about disclosing your MS to a potential partner.  When should someone cough up the details of something that is only a part of them, not what defines them? There’s only so long I can skirt the issue.  

“You play rugby!  That’s so cool. When’s your next game?”

“I’m sort of on the injured reserve list.”

“What did you hurt?”

“My brain.  Any way, I am thoroughly intrigued by your interests and hobbies.  Tell me more.”

During a stint of physical normality, it’s easy for someone to be cool with the whole MS thing. They think I’m a strong individual with a good outlook on life.  That is an admirable quality that I would be attracted too, but I’m not always so happy go lucky.  What happens when a relapse takes over the body?  Would a person want to deal with dating someone like that? Does someone see themselves being there for me for the inevitable sickness, not just the health? It’s just easier to date the girl who likes to strap things on her feet and go flying down the mountain or taking long runs on the beach.

Dating is scary for everyone.  You’re supposed to spend countless hours with someone over dinner or coffee.  You market yourself to someone hoping that he or she chooses you based on common interests and similar personalities.  You hide your crazy.  Then you discover that your personalities don’t mesh or that one of you is a bit crazier than the other.  The dance starts all over again with someone new.  That’s what “normal” people go through.  Add in various MS quirks and you’re going to the bathroom every 15 minutes or you walk like you’re drunk.  You’re not drunk because you don’t want to be dehydrated so that nurses can easily insert a needle into your vein to administer your MS drugs.  Hiding my crazy until I have trapped the unsuspecting victim was much easier before I was trying to hide the MS.  

Maybe I shouldn’t hide it.  Maybe it should be one of the first things I talk about.  “I’m from Ohio. I work for a university.  I have two fat kitties. I have two older brothers. I have MS. I like bluegrass, jazz, folk and psychedelia music. I prefer vanilla ice cream over chocolate.  What about you?”  I could talk about how I like volunteering for the MS Society and hit my date up for some donations.  That sounds like a good plan actually.  Gonna slap that on a match.com profile.  

I should smile and bat my eyes.  Laugh at awful jokes and flip my hair.  Totally lose my identity by rounding the corners of this square peg to fit into someone else’s circular life.  

I should put the cynicism on the bench and just go full force into finding the person who will inevitably push me around and talk about our five adopted children.  (There are too many children in the world already without parents and squeezing something the size of a watermelon out of something the size of a lemon does NOT sound fun.) I’m not really worried about all the frogs out there as I enjoy a good story.  I just don’t to invest the time when I could be doing much cooler things.

I just laid out a lot of crap here that could be a Psychologist’s next award-winning publication. 

Gettin Hot in the Hot Tub

I had an amazing St Patty’s Day Weekend.  Everything went really well, until I got into the Hot Tub.  I was hoping for it to be a time machine, but it was not.

I have been told over and over again to not let myself get overheated.  Having lived with many warm Rugby seasons in the hot and humid state of Ohio and only ever having an exacerbation in the winter, I thought I was impervious to heat.  Ha.  No.

My friends and I climbed into a hot tub after a night of celebrating St. Patrick’s Day and 30th birthday shenanigans.  It was pretty stinking hot.  I started to feel sick and dizzy about 20 after I got in.  Honestly thinking I was on the verge of passing out and then drowning, I jumped out of the hot tub.  Ok, I didn’t really jump, but awkwardly stumbled out of the boiling water.  

Knowing I needed to cool down quickly, I hopped into the shower and turned on the cold, cold water.  Letting the freezing water pour over me, I tried to calm down, but I was finding it difficult to breathe.  I don’t know whether it was because I was overheated or because I was freaking out.  Luckily a great friend met me outside of the bathroom after the cold shower and was able to help calm me down.  It was cooler in the basement so I went and sat with him for awhile until I felt better.  

The next day I was pretty weak and tired.  My right leg felt a bit numb, so walking was interesting.  I just had to be certain that my foot was actually touching the ground before preceding with the next step.  I was able to manage getting around, but It really made me tired so I rested for the better part of the day.  It was a good move because I felt much better the following day.  My foot wasn’t numb and I wasn’t as weak.  

Lesson learned:  Hot Tubs may be fun and relaxing, but they have consequences for those with MS.

Ok ok ok....I'll be honest.  It wasn't the Hot Tub that got me overheated.  It was this 30 year old STUD that got me hot and bothered! 

Things I Miss

With MS, there are things I had to give up.  Not completely I hope.  Some day I plan on returning  to the things I miss so dearly. There are some things that I wish I had now that would help me cope.  They were things I had before I was even diagnosed, but truly believe they would provide support or relief.

My Mom:  Well, my dad too, but having my mother around would be especially helpful.  We could commiserate about both being inflicted by MS.  We could still go shopping and have awesome parking thanks to our matching handicap tags!

Stilettos: My balance is too god awful right now to even attempt walking in my red patent leather nine west stilettos.  My legs look awesome in them.  

Dr. McCutie:  Dr. Keller is awesome, but she’s not as cute.  

Rugby:  I just want to play and play well.  I miss tackling.  I miss soring tries.  I really miss scrums. I’ll get there.  

Running:  Yeah, this comes as a shock to me too.  I always hated the act of running just to run and never understood why people did it.  I need something in my hands or at my feet to justify running. Chasing after someone with a rugby ball and then creaming them...that’s awesome.  Running around in circles is not awesome.  It’s weird, but it would be nice.  I just want to be able to run.  I like knowing that I could if Zombies were chasing me for my braaaaaains.  

Reading: The last relapse caused my eyes to go all wonky so I got out of the habit of reading as regularly as I once did.  I no longer wear an eye patch and can see pretty good.  I sometimes wear the eye patch when I’m feeling like a pirate.  Arrrrrrrr.

A Significant Other:  The only time I really miss having someone in my life is when I need a go to person.  Yes, I have some awesome friends, but the bond just between one other person was nice.  I think MS has humbled me a bit and I actually ask for help now.  I’d be less likely to keep it all inside with a Super Woman Attitude.  Also, when I see fellow MS person with a spouse by their side, I feel all warm and squishy inside. These people have support and love when they need it most.  I still don’t see myself having a significant other again any time soon, but maybe this new feeling will make dating and mushiness a priority in my life.  As long as they don’t want to spend every waking minute with me, I might be ok with it.  I like my me time. 

Falling

People with MS fall a lot.  With balance, coordination and vision issues, staying upright isn’t exactly easy.  If the ground is wet or uneven, we have to be very careful if we don’t want to hit the pavement face first.  My face is too pretty to smash up.

I love Exploding Dog!  Should have put this in the Stairs Blog though.  Oh well...still relevant!

Being VERY aware of my surroundings in important.  I have to watch out vehicles, bicycles and other pedestrians.  Normally they are distracted by shiny things, mainly their cell phones.  If I don’t want to get thrown off balance or run over, I have to anticipate their moves.

While watching my fellow humans riding and walking, I also have to watch out for various parts of the sidewalk jumping out at me.  It happens.  Ok, maybe not, but that’s what it feels like.  There may be an unnoticeable dip in the sidewalk or a sudden step where the sidewalk and the pavement below look very similar. I scan my surroundings while I walk.  I can’t keep my nose to the ground because I might miss something coming straight toward me.   If I’m not careful, I could totally miss a step and co plummeting into a broken wrist, nose or hip.  Walking can be very difficult and exhausting on the brain.  For those of you who walk just fine...put your cell phones away.  You’re distracted when you’re talking and texting making it harder for us to dodge you. We may think you’re walking straight and then a quick turn can throw us off.  Be mindful and respectful.  Is that too much to ask?

I’m lucky that I haven’t had a fall due to MS.  I have been thrown off balance, but I recovered well.  It is inevitable, but manageable as long as I am aware of my surroundings and take things slow.  

While at my local support group meeting we watched a video about preventing falls and fall recovery.  It was very informative.  A lot of the information may be common sense, but it’s nice to be reminded of the little things one can do to help prevent accidents.  The funniest part we all discussed is when we have a sudden urge to need to go to the bathroom.  Frequent urination is a common symptom of MS.  While rushing to the bathroom, we may forget to be more cautious.  There is medication for the frequent urination thing, but I’m thinking about investing in Depends.  

If you would like to see the guide that accompanied the video about fall prevention, it can be found here.

Local MS Support Group

I attended my first Multiple Sclerosis Support Group, and I was very glad I went.

The group members were very nice and I can say that I enjoyed myself.  Jokes about MS seem to only be truly admired by someone with the disease.  Yes, “normal” people understand that they are humorous, but I the group had a hearty laugh over some of the funny anecdotes about my mother.  

It was great to have a chance to vent to people that understand.  They know what I am going through and are very supportive.  From the second i walked in they were super nice and welcoming.  It was a good mix of people.  I was the youngest and it looked as if there were people in their 50s and 60s.  I think I bonded most with the women that appeared to be in her 40’s.  I’m actually looking forward to going back next month.

I was a bit uneasy though hearing some stories.  Maybe it’s my hubris in thinking “I’m not as bad off as them,” but it’s inevitable.  The part that worried me most was when about three of the participants said they had to quit their jobs because the MS was too much  to handle.  That scared me.  I have no desire to quit my job due to MS.  I know that there were some who are not working and are close to retirement age anyway, but one of the women probably had a good 20 years left in her career.  I just can’t even think about being unemployed because I would feel like it  would be like admitting defeat.  I would be bored to tears if I couldn’t work.  It also keeps my mind and my body active, which help ward off the advancement of the symptoms.  My mother enjoyed working and I don’t see myself exiting the workforce any time soon.

The group is good for me though.  It causes me to think ahead about what could happen in the future.  It’s one thing to get medical questions answered by doctors, but getting life questions answered by those facing the same obstacles is so helpful.  It is a relief to know there is support.  I recommend to anyone with MS that they find a support group.  Your local MS Society Chapter can help you find one close to you. 

Fundraising for the National MS Society

This will be my fourth year fundraising for the National Multiple Sclerosis Society .  My first MS Walk was in Dayton, Ohio the year I was diagnosed, 2009.  I walked in Dayton the following year and last year was my first Oregon Walk.  I’ll be doing the walk again this year, but I’ll actually be walking unlike last year when I was being pushed in a wheelchair.  

I raised a good deal of cash last year even while in rehab with just my iphone to send out messages.  I was hoping to do better this year, but since I’m back to work and back to having a life, it wasn’t really something I could devote a lot of time to.  I had all these great ideas, but time went by a little faster than I had wanted.

At this point I am the #1 individual fundraiser and my team is #1 for the Corvallis site.  This could change if I don't keep up the work.  There is still over a month left!




You should join or donate.  Yeah you.  The person reading these words right now waiting for whatever it is you are downloading.  (I don’t need to know what you’re downloading.)  You can march on over to my page to join my team and/or make a tax-deductible donation.  It’s so easy.  Every little bit counts and it always feels good to give.  If you walk with us, you’ll be invited to a post-walk par-tay at my house!  All my boys are excited.  (Especially Tommy Jay when he heard there will be food.)

This little Nutria wants you to join us! 

 

All the cool kids are doing it.  You want to be a cool kid don’t you?  Do it! PEER PRESSURE!!!  

Thanks in advance for your support.  :-D

MS Advocate

There may be days when the MS flares up and I am not at my best physically.  This doesn’t stop me from being an advocate and voicing my support of agencies working with people with MS or are doing research to help end it.  

With the help of the National MS Society I have contacted my representative to voice my support to fund three agencies, Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health (NIH), and the Lifespan Respite Care Program, that are fighting the war against MS.  

You can do the same by going here.
To follow up on more MS Advocacy, folloe the MS Activist Blog.