Mark Your Calendars!!! Halee's Jubilee :)

One of my goals in beginning this blog was to meet new people – not just those living with lupus but anyone who has had some sort of experience with lupus whether it is through a family member, friends, co-workers, etc.  Social media has been a great medium for connecting with people and learning just how many people have been affected by lupus!  I have made many new friends both near and far who have invited me into their lives to talk, laugh, cry, & vent about the toll that this illness can take on our lives and those we love.  Most importantly, we discuss ways to help lupus get the attention it deserves!  These people have been such great listeners and so supportive when I feel so alone, going through my worst moments when I feel like nobody really gets it.  I’m so grateful to my new friends even though I haven’t met any of them face to face. 

I hope to change that very soon as I hope (trying to work around school) to attend a very special upcoming event in Mequon, WI.   The program Everyday Health (which appears on your local ABC affiliate Sunday mornings at 11am – watch the episodes here) will be filming a lupus segment at Libby Montana’s restaurant in Mequon, WI beginning at 5:00pm on Wednesday, September 21.  My friend Kim & her family will be hosting a fundraiser to coincide with this filming and her daughter, Halee is being interviewed to talk about what it’s like to live with lupus.  The event will include a carnival for little kids, volleyball tournament, & lupus bracelets for sale.  If you purchase a T-shirt for $15 you will also get a hot dog, chips & a soda.  You will also have an opportunity to meet Miss Wheelchair WI 2011 Kristin Larson - another amazing chick living with lupus with a secondary complication of Transverse Myelitis.  Through her passion for helping others, Kristin active volunteer and legislative advocate for the Lupus Foundation of America, writing letters of need to Congress to bring awareness and support of medical research for individuals living with the disabling illness Lupus.

I met Kim a few months ago through the Lupus Foundation of America – WI Chapter.  She reached out to me after reading my blog (it’s so nice to know its reaching people!) and shared with me how her daughter Halee has lupus.  As she shared Halee’s story, my heart went out to her as I can’t imagine how difficult it must be for a parent to watch their child go through this.  However, Halee isn’t sitting back and letting lupus run her life!  Today she is a thriving 15-year-old sophomore in high school that is feeling GREAT!  While she can longer play volleyball, she remains involved by managing the JV volleyball team and is a member of her school’s drama club.  When she’s feeling good (which Kim said is most of the time) she loves to hip hop dance!    

This event is so important because it is bringing major attention to lupus and putting it out there for everyone to see.  Halee & her family have done such a wonderful job in working to bring awareness & funding to lupus.  They have succeeded once again by helping to get the topic of lupus featured on this program.  I encourage you to attend if you can – heck you could even be on TV :)

Event Details
  
Halee’s Jubilee
Wednesday, September 21, 2011
Event begins at 5:00 pm

Libby Montana’s Bar

   5616 W Donges Bay Rd

   Mequon, WI

   (262) 242-2232

Back To School

It’s been a crazy couple of weeks.  So much has been going on so I apologize for the small novel that is to follow.   With the semester starting on Tuesday, we wanted to get in so many things before school took over our lives!  We used the long weekend to get stuff done around the apartment, stock up on supplies, groceries, see family & friends, enjoy quality time together & of course sleep in as much as possible J.  We attended the Walworth County Fair, saw Crazy, Stupid Love and The Debt (I would recommend both).  At the fair, we ended up adding to our family by winning another fish while playing the goldfish game.  Our newest member, Nito (short for incognito since he has camouflaged coloring) joins his brothers Flash (he’s lightening quick) and Bino (pronounced Beeno - short for Albino because he is white/transparent in color).  Nito is in his own bowl for the time being as he’s a bit to small for the aquarium yet…  We packed in so much it went by so quickly & before we knew it, it was Tuesday!

The Fall semester kicked off on Tuesday for both Ed and I.  Yes that’s right; both of us started school!  Ed is going back for his Master’s in Accounting and me, well, I’m still working toward my nursing degree.   I’m nervous as I will be applying to nursing school this fall to begin next year.  It’s always nerve racking because the program is so competitive with a lot of applicants and limited space.  I’ve worked very hard to maintain a high GPA in in addition to volunteering and writing a kick ass admissions essay.  So we’ll see – fingers crossed (and toes, legs or any other body part that can be crossed). 

After only two days, this semester has proven itself to be quite a challenge as I am taking Chemistry, Physics, Medical Terminology & Yoga.  Yes…  I’m taking Yoga!  So far it’s my favorite class and is definitely a great stress reliever from the others J  Since I have never taken a Yoga class, I didn’t know what to expect but after the first couple of classes, I have a feeling I’m going to really enjoy it.  I’m amazed at how difficult it was for me to sit still during the meditation part though.  Who knew?  The great thing about the practice is that it forces you to focus on yourself and really get in touch with your body & mind – which is something that I’m not very good at.  Ed is enjoying his classes as well which makes me very happy because going back to school can be a very intimidating experience (especially as you get older).  As we get further into the semester it is definitely going to get interesting as we juggle school, work, studying and finding time to spend with each other as well as family & friends.  We just keep telling ourselves that it is just temporary and look forward to when we are both in careers that we enjoy. 

The schedule change has been a definite adjustment for me as I’ve been asleep by 7:30pm the last few nights.  I’m hoping that its just temporary as there is no way that I will be able to be in bed that early (although its nice) once I start getting slammed with homework.  I guess I’ll just cross that bridge when I get to it.  I have been feeling alright (not horrible, but not great) so I’m just trying to take it easy and not doing anything that is going to make me feel worse or bring on a flare.  I’m still seeing my Physical Therapist twice a week and I seem to be improving with the treatments.  The tingling in my arms & hands has lessened over time, which has been such a relief as it made the easiest of tasks so difficult to complete before.  On the other hand, my upper back and neck discomfort are still there and seems to be worsening with the treatments so it seems to be a double-edge sword sometimes – relieve one thing but make something worse.  I try to remain optimistic that it will get better in time and I will be back to myself and doing the things I used to very soon!       

In other news… 

Can I say how absolutely thrilled I am that the NFL season kicks off tonight?!?!?  Well I am!  I’m thrilled to be spending my Thursday night watching my boys, the Green Bay Packers, take on the New Orleans Saints. I wait all year for this season and I’m so glad that the lock out is over and its going to happen!  My other boys, the Brewers, begin a four game series against the Philadelphia Phillies tonight at Miller Park - hoping they can win at least two!  Add in the Badgers awesome victory this past Saturday against UNLV and it’s a great time to be a Wisconsin sports fan!!!! 

All in all, life is good – busy, crazy mad but good!  Hope everyone has a great rest of the week and weekend!

Till next time…