Ice Bucket Challenge

Even though she is a bobcat, Kristen “KJ” Pertner is still a dear friend of mine and she has nominated me for the Ice Bucket Challenge. .

I have been following this phenomenon for the past few weeks and have been looking at it from a marketing perspective since that is the focus of my MBA studies. I am hopeful to be able to research consumer behavior in the non-profit sector.  I am interested in looking into why donors choose the organizations they do for their charitable giving.  

Because I want to increase my knowledge of non-profit marketing I have been reading a lot about this, articles both for and against it.  Here is my personal take based on what I have learned and some questions I don’t have answers to, but hope to:

1.      It’s wasteful.  To offset the amount of water used, I have chosen to skip a shower. Shun will love that.

2.      Though the challenge has raised a great deal of money for the organization, will the ALSA be able to sustain the numbers or have a plan in place to generate future revenue from this burst of donations?  How will the success of the Ice Bucket Challenge affect future campaigns?  

3.      Are people actually learning about ALSA, or other organizations that are being supported by donations inspired by the challenge? Is there a metric in place for measuring the awareness built from this? I will be interested in learning more about this.

4.      Funding cannibalism is an issue. (I’m NOT talking about funding cannibalistic activities like a people potluck. I mean the notion that people on average are limited in how much they can donate to charity, if someone donates $100 to the ALSA, he or she will likely donate less to other charities or not at all.  Don’t worry Girl Scouts, I’ll still but Thin Mints.) Before you donate anywhere, please look at your financial situation to see if you are even able to donate at all. If you are worried about your favorite cause will take a hit, don’t donate to the ALSA and donate to a cause of your choice instead. Don’t forget to tell people why you have chosen that cause. If you can’t give money, see if you can volunteer your time.  If you’d be interested in volunteering with the NMSS, let me know and I can connect you to the right people.

5.      Why must the attention be placed on the donor and not the ones who actually benefit from this money raised?  As someone with a neurodegenerative disorder, I would benefit, so this is a moot point.  It’s allowed to be all about me and you people know I love a spotlight.

6.      Why can’t people just donate in silence?  The Ice Bucket Challenge isn’t just about money.  It’s about building awareness of the cause you support.  To break through the noise of other marketing images and communications we see on a daily basis, both commercial and non-profit, organizations need to make a little noise.

7.      People are tired of the videos.  Yeah.  I get that. The celebrity ones are quite annoying, but Dave Grohl’s was hilarious of course. If you’re a Foo Fighter or Stephen King fan, you’ll love it.  Oh, and the guy who plays a Hans Solo on Stargate…Patrick Stewart.  His was nice.

I will not be nominating anyone, because I feel as if everyone I know has been nominated, but I will encourage others to take the time to learn more about amyotrophic lateral sclerosis ALS. If you choose to donate to the ALSA, I will say that any scientific breakthroughs on neurodegenerative diseases like ALS will help researchers studying  MS and others like Alzheimer’s, Huntington’s and Parkinson’s.  I am thankful to my friends and family who have already taken this challenge and in the process not only talked about ALS, but about MS as well.  You didn’t need to take that extra step, but you did and I am truly honored and humbled by your altruism. 

ALS Association
Jill's National MS Society Fundraising Page

 

Dear Moms and Dads of a child with MS.

MS is difficult to grasp for those of us who have been diagnosed with the disease.  We get so caught up in the “what ifs” of our future with MS, that we sometimes don’t even know how to tell the people we love how it affects us on a daily basis.

Just continue to love us like you always have.  We won’t break if you hug us.  We’ll actually get stronger.
Sadly I didn’t have the problem of telling my mother about my MS.  I lost her to cancer five years before I was diagnosed.  Even if she was around, she would know exactly what I was going through since she herself was inflicted with MS.

I understand it would be difficult for a mother or father new to this phenomenon to try and understand what their baby is going through. Since the moment your child was born you have been trying to protect her from the hazards and harms of the world. It’s hard to deal with something you have no control over.  Now that I am a mother myself, I really understand the need to always keep my baby safe.

Do you know what I have to say to parents?  I’m doing awesome and your child will too.  It will take some time for her to come to terms with this new part of her life, but it’s only a small part.  It does not define her.  I am proof that a person can live a wonderful and full life while living with MS. I fell in love.  I had a child. I am pursing my MBA. I love my life.

There will be bad times.  It's not always going to be easy.  Her symptoms will make a lot of things difficult, but with relapse remitting MS, there will be a light at the end of a very dark tunnel.  Support and love your child with all you have during these relapses.

As long as I don’t ignore my symptoms and take care of myself, I will have less severe relapses. Do what you can to ensure that your son or daughter does the same and he or she will too be able to pursue all that s/he had planned to do before learning about MS.

Me and my Mommy..back when perms were cool.

Why I decided to “come out" to my coworkers about having MS

I was told not to divulge my “disabled status” at work from the office that works (confidentially) with people who have disabilities at the university that employs me. During a year of being lost in my professional life, I constantly went back and forth on this topic.  At the first position, it came out that I had MS because I had an awful relapse that caused me to be out of work for four months. It really wasn't their business as to why I was out sick, but being a young lady and bed-ridden raised a lot of eyebrows, so I told them. I didn't want to be a character in a string of gossip and speculation.

I was with that division for nearly three years before I had enough of inconsistent and unreliable leadership.  I wanted to stay at the university though, so I looked for another position elsewhere.  I should have stayed at my original post. I didn’t really trust anyone at my second position to divulge my daily battles.  It was a stressful situation and I already had communication issues with my boss.  If she couldn't understand or respond to the most simple requests, how could she understand this? We did not see eye to eye.  Luckily I was in a classification that I would not be terminated, just reassigned.

The third position was only temporary while I found my niche, so there was no need to talk about it. there. Although in the short time I was there, I thought I could some day expose my secret to my coworkers.

Now, here I am in a wonderful position with so many awesome opportunities.  I enjoy my coworkers and for once actually admire and respect the leadership. This division has their act together and is remarkably organized.  I have never in my life worked for an organization like this.  I love it.  Not only do I love my day to day activities, but the Vice Provost reached out to me to be a part of a special initiative.  This would never have happened in the places I worked before.  I feel valued and appreciated.

Cluttered desk.  Cluttered mind?

Would I mess that up if I told them I had a disability?  Would they think less of me? Would they not trust me to be able to do my job?

Out of all the places I’ve worked on this campus, I had the most trust in my coworkers, my supervisor and the leadership of this division. I felt comfortable disclosing my disability with my supervisor (and my supervisor to be be…due to office restructuring) at my annual review.

I wasn’t sure how I would bring it up, but the topic of MRI’s came up during a casual conversation before the review. My current supervisor talked about how she was slightly claustrophobic and my future supervisor asked if she had ever had an MRI as her husband was a MRI technician. I took it as a sign to start talking about my own experiences with MRI’s.

They were very supportive and thankful that I let them know.

I was so relieved and am even happier and more secure in my work life.  I have confidence again and am looking forward to tackling some tasks.

It really comes down to my decision about who I let know about my disease. The main reason why I wanted to disclose my situation is because I don’t think it’s fair that I get to “hide” my illness while others who are in wheelchairs or use canes do not have that choice.  Also, I’m an advocate for people with MS.  How can I truly fight for us and support others if I am keeping my MS a secret?

This was my decision.  Just like each person with MS is different, so is each person's decision to talk about their experiences.

World MS Day...and my Daddy.

Day is World MS Day. The Multiple Sclerosis International Federation established this day in 2009 (the year I was diagnosed) to raise awareness about MS.

This post was going to be all about World MS Day and how various organizations are working together around the globe to provide information and awareness about MS and how it affects more than two million people worldwide.

However, that all changed when I realized the date.  May 28th.  Something happened on May 28th.  Then it hit me.  My father died on May 28th exactly 11 years ago.  The date wasn't fresh in my mind because it's not a date I like to remember.  I remember his birthday: November 6th, 1947.  That's a day to remember and celebrate.  His death is not a day to celebrate.

I am a completely different person since May 28th, 2003.  I lost another parent in 2004.  Then in 2006 I moved out on my own to a new town. I was diagnosed with MS in 2009.  In 2010, I moved across country to live in Oregon where I met the love of my life. I had a child in 2014. I can't believe I did all of this without my father. A lifetime has happened in these 11 years.

I'd like to think that he would be proud of me.  I know he would love my daughter and he and Shun would have been buddies. He would love Oregon and would probably have gone salmon fishing when he visited.

However, would I be where I am now had he lived?  Would I have taken the risk to move to the other side of the country if I didn't feel I needed to live life to its fullest? Would I have met Shun and had my wonderful daughter? It pains me to think of it that way.

When I celebrate World MS Day next year, I will be reminded of how monumentally my life changed on this day in 2003.

External Cephalic Version

My baby girl is just as stubborn as her mother and her mother’s mother.  She comes from a long line of strong women.  If we are comfortable and happy, nobody is going to move us.

BabyGirl is Breech.  She’s not where she’s supposed to be at week 37.  To get her to be in the correct position, occipito-anterior position (head down, facing spine), in order to have a safe vaginal birth, we’d have to get her to flip since her head is toward my head and not toward my vagina.  She’d either have to do it on her own, which would be fun to see a child of mine cooperate, or have an external cephalic version.  This procedure would be done at the hospital by my OB.

Shun and I did everything to get her to move on her own.  We frequented the site www.spinningbabies.com as recommended by my sister in law that had positions and tips listed for me to get that baby to spin. I crawled around on all fours. I placed an ice pack on the top of my stomach.  I went to an acupuncturist. I played soothing music near my vagina while Shun shined a light up there. We were going to get this baby to move to prevent me from having to go through the ECV.

When the time came for my ECV the doctor used an ultrasound to determine the position of the baby. It didn’t work.  My BabyGirl was still breech and the ECV was the next step to prepare her for a safe entrance into the world.

It's a very intense procedure so my doc recommended I have an epidural to relax my muscles to make it easier on me and the baby. If I wasn’t tense, the team could manipulate the baby easier and cause less stress.  Although I was entertaining an epidural free birth, I opted to have it for the ECV.


My awesome nurse took me back to the surgery area to get my epidural. The anesthesiologist was also very awesome, but there was a blood vessel in the way of the catheter during the first try. To avoid it she had to pull it back a bit, but the medicine wasn’t being administered well enough. I wasn't going numb. I was worried that the epidural wouldn’t work.  My mother, who also had MS, told me stories about how the epidural didn’t work for her. I was wondering if the same thing was happening to me either because of whatever genetics my mother and I shared or the fact that we both had MS.

We would need to try a different spot where we’d be less likely to run into a blood vessel. Try number two was a success and the medicine went in without a problem.  It was not an issue with MS.

Having a numb belly is interesting, but I was ready for the version.

While I was getting my epidural, Shun was in the other room putting scrubs on. When they finally let him in, I started laughing. He just looked so cute in the scrubs, mask and shower cap –like thingy. Once he was there and I was fully numb, we began the procedure.

DaddyShun playing Doctor.

Oh holy hell it WAS intense. I had two doctors pushing and squeezing on my belly. They were really working hard to get BabyGirl to spin. I had to stop them once because of the pressure on my chest was making it difficult to breathe.

On the second try, there was a brief moment when we thought she started to spin and everyone in the room got excited. As soon as the doctors stopped to reposition themselves, she went right back to her spot.

Stubborn baby.

They let me rest before they tried for a third and final time. The doctors were pushing really hard and were doing everything they could to spin her, but she wouldn't budge. Since the third try was unsuccessful, they stopped.

My OB, Anesthesiologist, nurse, and CNA who helped with the procedure were all awesome. It wasn’t a successful procedure, but I felt great support through the whole ordeal. Shun by my side saying encouraging words was also very helpful.  He didn’t even mind being the bud of all the jokes in a room full of women. I love that man.

So what now you ask? We wait to see if she flips on her own. I will continue to try the techniques I did before to try and make it easier for her. She’s my daughter though. Girl is going to do what she wants to do. If she doesn’t flip on her own, we’ll be scheduling a c-section for week 40. Not too worried about that since there are amazing people in the maternity ward of my hospital


I am sore one day later and of course am worried to see if any MS symptoms pop up.  So far so good.  My body is still protecting me and my baby right now and aside from the belly soreness, I’m not having any problems.  I made my neurologist aware that I would be having this procedure in case any trauma caused my MS to flare up. She has been great and supportive during my pregnancy. I’m lucky to be surrounded by amazing medical staff.

My advice to MS Pregnant Ladies:  Keep everyone in the loop. It’s not a burden to keep your OB and your neurologist informed.  They appreciate it.  If you’re having a procedure done by your OB, make sure your neurologist is aware.  It’s a simple phone call to have a note left for your doctor.