Beach Beauty with Lupus

It ha been a long time.  Apparently I only enjoy sharing my journey with Lupus when something bad is happening to me.  Since it's been so long since I've felt really crappy I haven't felt the need to share and that isn't right.  People need to know that there are good days, even great days!  Days when you forget you have Lupus.  I went to the beach and for more than a quick ten minute "I saw the water" and I'm out of there!  We spent hours playing in the sand, touching the water with our toes and napping all under the protection of a bunch of umbrellas, hats, and lots of sunblock!  For Jackson, it was his first trip to the beach.  For me, it was my first trip to the beach with Lupus.  Although I will say it was not incredibly awesome wearing so much protective wear I didn't feel too out of place.  No one that I noticed was staring at me or acting like it was odd that I wasn't sporting a bathing suit like everyone else.  I think the push nationally for SPF is helping.  They are making some very cute SPF clothing and everyone is well aware of the risks of the sun!  My family helped a lot too!  Always reminding me to move my chair so I stayed in the shade or asking if I needed more sunblock.  I am grateful for the vacation to feel normal.  I am so proud to say I didn't get the slightest bit of sunburn.  I came home the way I left, no aches and pains.  Getting enough sleep on the other hand was a challenge!  Jackson is 16 months and in the 98th percentile for height and weight.  So need less to say he did not want to sleep in his pack n play.  We alternated from the floor to the futon to the bed and no one slept well in his room since he snores and breathe loudly all night!  So, its back to work and daycare.  Back to waiting for the next big thing!  We do not have another vacation planned yet but I am excited thinking about all the places I want to take Jackson that for a long time I didn't think I was going to be able to. 

Jackson and I enjoying the beach for the 1st time!

 

If you have time, please check out this link to see my team in the Walk to End Lupus Now Maryland walk which is in 40 days!  I would love to have you on my team or as a supporter.  Lupus is a horrible disease that hurts so many people.  I am blessed with a wonderful support system and the best doctors in the country.  I know times are rough for everyone but if you can afford $5, $10, $15 please consider a small donation to my cause.  I will not stop asking until we find a cure.  I appreciate everything you have done, are doing right now, and will do in the future to support my family and myself in this crazy journey.

http://lupusdmv.kintera.org/faf/search/searchTeamPart.asp?ievent=1072113&lis=0&kntae1072113=F6592DC0DFB442169501F5E3EA263764&supId=0&team=5526234&cj=Y

Today I Resent My Lupus

I have been hurt, upset, even devastated by my Lupus but today I realized I have been having a growing resentment for the disease.  I do not resent it for taking away precious time with my infant or for making me so sick I could not move.  I resent my Lupus for being so unpredictable that I thought I couldn't step up for a more important job at work.  I was afraid to take on too much responsibility because I didn't want Lupus to get in the way of my success or hinder my performance.  Since it came on so strong and unexpectedly I figured I should move back to Maryland and take a low-stress, low-worry assignment, which my employer was more than willing to accommodate.  I do not want to appear ungrateful because I am not.  I am very appreciative of all the effort and understanding that was shown to my family and myself.  HOWEVER, I hope that I did not make the wrong move by choosing an easy job.  I hope choosing to get healthy and be with my family didn't set my career back too much.  I know I am capable of more than what I am doing.

TODAY'S BLESSING:  Learning new things and not being furloughed (yet, and honestly, if I had been furloughed, it would be my blessing for the day too... I want the money but I would LOVE a few days off)

Steph's Support Squad - Here is a link to the Walk to End Lupus Now Baltimore 2013 team page.  If you are available on 28 Sept and in the Baltimore area  I would love to have you on my team!  If you cannot make the walk please consider donating to the cure!  Every dollar counts and helps!  Lupus does not have a cure yet but we will and you can help!  Thanks

What are you doing on Sept 28th?

Steph's Support Squad

Check out the link above to register to walk with my team on 28 Sept 2013 in the
Walk for Lupus Now Baltimore event!  Registration starts at 2pm, walk at 3pm @ Druid Hill Park.  The walk is 1.5 miles so everyone can do it.

I know its early but I have high hopes for this walk.  At the end of April my team walked in Washington DC and we raised over $1,100 (well over our goal!)  This time my goal is $2,000 for the team.  I know we can do it.  Please register to walk with me.  If you have plans already, do not feel bad... you can still help by supporting our goal financially.  Every dollar counts.

Please pass this message on to your friends/family/coworkers and let them know they can join the team and walk or make a donation.

More to come...

Walk to End Lupus Now April 2013

On 27 April 2013, my team will be walking in the Walk to End Lupus Now in Washington, DC.  This is my first walk to support Lupus Research.  The response has been fabulous and better than I expected.  I have 17 teammates and we are almost at our team goal of $500 total donations.  I am being sponsored by the Green Turtle @ Arundel Mills who donated $100 for team t-shirts.  They are also going to have a donation night at the restaurant for me where I get 10% of profits to donate to a charity of my choice.  It feels good to be involved and to give back in hopes of progress for Lupus patients.

Please visit my page and share with everyone you know!
Steph's Support Squad Homepage

Today's Blessing:  Finally having FIOS at the house!

Please Support My Team for the DC Lupus Walk

Steph's Support Squad Website

I have started a team for the DC Walk to End Lupus Now in the end of April.  My goal is to raise $500 for the team and to get 15 people to walk with me.  We are already on a great start!

I would appreciate ANY help possible.  Maybe you would like to walk with us, or maybe you can donate (anything would be great).  The donations are tax deductible.  Or maybe you can just share the link through social networking sites or email.  Even sharing awareness would help a lot.  I know times are tough so please do not put yourself out.  I am very grateful for all that everyone has done for me already.

Today's Blessing:  Getting admin leave from work to stay home for the packing company to come estimate boxes needed for our move.