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

Want to learn more about Lupus?

26th Annual MD Lupus Summit

This is the link to the summit.  My husband and I will be attending this year.  It will be hosted at Johns Hopkins University and it is a free event.  If you are a new lupie or know and love one this is the event for you.  Word on the Lupus street is that Dr. Petri of the Lupus Center at JHU, my doctor, will be the keynote speaker.  Hope to see you there!

Now I Am THAT Parent...

Who gets into fights in the daycare parking lot.  Yup, that's me.  I knew it was going to happen and I expected it; however, I never expected this to happen in the parking lot at my son's daycare.  But I guess I was wrong to think that the nerdy old man who was exiting the daycare center would just smile and nod like the nice old man he appeared to be.  Oh boy was I wrong.  This week my arms, wrists and hands are sore and have been on and off numb.  So, even though my knees have only been hurting on and off, I pulled into the handicap spot up front and pull my handicap hang tag on my rear-view mirror.  I got out of the car and headed toward the door minding my own business.  I passed the old man with his child or grandchild and it took me a minute to realize what was happening.  His young son was talking about something but this man was talking loud over his son apparently not paying one bit of attention to what the child was saying.  What was this man going on about?  I only caught bit and pieces but the general idea was "There goes another Marylanders wrongfully parking in a handicap spot but is perfectly healthy, its a damn shame, blah blah blah" I couldn't believe this was happening and I planned to just be the bigger person and keep walking but I could not do that so of course I spoke up.  I turned around on my heels and said loud enough so he could hear me "Sir, you are so wrong and in fact very rude.  Not that I have to explain to you but I was issued this pass by the State of Maryland, you do not know me and I do not appreciate your accusations.  This must have caught him off guard because he began yelling about how he hates this state that gives everyone handicap tags and how it is misused and abused by people like me.  At this point I had to choose between continuing to argue with this man or to go inside, which is what I did.  I reported him to the front office, which has a window so the ladies could see who I was talking about.  There were two ladies, one laughed when I said "That man was harassing me in the parking lot and I do not appreciate it, he is very rude."  I looked at the woman who was laughing and said this is not funny.  Boy did that wipe the smile off her face.  I can only assume she was laughing because he is a problem father but I do not have anything to confirm that.  I surely hope she wasn't laughing because I said he was harassing me.  I told the ladies that he was yelling about me parking in a handicap spot and that I actually do have a legal pass to do so.

When my husband and I attended the first Lupus group meeting back in San Antonio, TX, the group leader said she was confronted at a store once by a man who started banging on the handicap parking sign saying she shouldn't park there since she is not disabled.  People are so insensitive and rude.  Not everyone who has a handicap or disability uses a wheelchair or crutches or is missing a leg.  To assume that someone with a handicap tag is lying is absurd. If they have a problem with who the DMV provides passes for then they should take it up with the DMV or their representatives.  I do not regularly use my pass but if I did it is no one's business.

I have lupus but I look fine.  My joints are stiff and throbbing but you don't see that. I hope I do not run into this man in the future.  I hope he was picking up his child at that time which was not a normal pick up time for him.  What should I do next time, smile and wave?  Ignore him?  I do not generally believe saying nothing is being a bigger person.  A bigger person stands up for whats right.  As a new member to the lupus community, it is my job and responsibility to point out assholes like this man and let them know how wrong they are.

I sure hope his child does not grow up to be like him.  Maybe he will be more compassionate.  I hope this evil man gets a horrible disease like Lupus and can't walk but still looks normal and healthy.  I hope someone calls him out on this when he parks in a handicap spot and I hope he remembers what he did to me.

Jackson and me celebrating summer finally!

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

Registration is finally open

I have created the team webpage for the Sixth Annual walk to end lupus now in Baltimore! Link to come...hard to do from my cell.  Couldn't sleep until I told you!

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...

Baltimore Lupus Walk on Sat.

Baltimore Lupus Walk this Sat!

Please join my team, Steph's Support Squad and walk with me in the fight against Lupus.  This walk is at Rash Field in the Baltimore Inner Harbor on Sat.  See the link above for more details.

Don't have time to walk this time?  You can also donate to the cause at the link above.  Let me know if you have any questions!

Thanks for your support.

Walk to End Lupus Now Washington DC 27 Apr 2013
Steph's Support Squad