Sunday, December 15, 2013

No one shares the good days

I have been feeling so good for such a long time that I have neglected to keep up with my blog. That is a huge mistake. I am sorry. People with lupus need to hear about the good days as much or more than they need to hear about the bad days.  My time has been filled with holiday gatherings that were missed while we were in Texas. Now that we are home each weekend is full of family activities. We have already had a few snow days which really let you know Christmas is right around the corner.  I am trying to stay healthy and keep the stress under control.  Even though I am being tested with the new roof and chimney repairs that did not seem to fix the leaks.

Jackson is getting so big. He says so many words...his favorites are dog, truck, and no! This year I am excited for him to open presents and see Santa.  It is crazy how different this year is from last.  I miss my Texas friends like crazy especially around the holidays.  I can never express how much they mean ro me and my husband.  They are family.  I couldn't have gotten through last Christmas without them.

I am blessed.

Monday, August 19, 2013

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

Wednesday, June 12, 2013

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!

Tuesday, June 11, 2013

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!

Thursday, May 16, 2013

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

Tuesday, May 14, 2013

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!

Monday, May 6, 2013

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...

Monday, April 29, 2013

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

Tuesday, April 9, 2013

Lupus Flare and a 1st Bday Party

About 3 weeks ago I got an ear infection.  Apparently any type of infection can cause a flare.I got a pretty bad flare.  Bad fevers, joint pain, and a rash...got my first steroid shot in the butt... Thanks Dr. Petri for helping me get better enough to enjoy my baby's Baptism and 1st Birthday Party!  Jackson will be 1 on the 16th.  Wow, how fast the year went and so much has changed from a year ago.

The Baptism was quick and peaceful.  Jackson was so well behaved.  I had a photographer come to take pictures.  I knew I couldn't take any pictures while holding him and I am so excited to see how well they turned out.  We were blessed with good weather, a little cold, for the party and so many people showed up. Jackson had a blast.


Today's Blessing:  A big loving family

Tuesday, April 2, 2013

oh no... the Dentist!

Okay, I admit that I haven't been to the dentist in FOREVER.  But it isn't all my fault.  The dentist schedule the 6 month appointments 6 months ahead of time.  By the time the appointment I either had to travel for work or something else going on like moving to Texas.  In Texas it took forever to find a place to take new patients and then I got Lupus and the world stopped.

I have an appointment tomorrow with the same dentist I used to use before moving to TX almost 3 years ago.  I am imagining the pain I am going to feel tomorrow during my cleaning.  I am crossing my fingers that I do not have any cavities or other issues. 

Does anyone else hate how they always talk to you and ask questions while both of their hands and some utensil is down your throat?  Why do they do this?

I still have not heard back about my MRI/Echo/Bubble test results.  I go back to Hopkins on Thurs to see Dr. Petry so I will ask her if she has heard anything.  Busy week with medical appointments.

Today's Blessing:  Living about 3 min from Kohls.  I finally bought some pants that fit!  I won't look like a slob at work anymore.

Sunday, March 31, 2013

Allergic Reaction to what?

For the last two nights I have been fighting a horrible fever.  Body is hot but I am freezing. Headaches. Rash all over legs arms and arms. No sleep. The worst part is I dont know what happened.  I have stayed out of the sun.  Watched what I ate.  Thanks god Im going to see Dr. Petry on Thurs.

Tuesday, March 19, 2013

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!

Saturday, March 16, 2013

Kicking a Cold

So when you have lupus it is really hard to get rid of illnesses like a cold.  Its been a week and I am still sick.  I am so tired of being sick.  Went to the doc who said it is an ear infection too.  Geez.  Im on more meds but Im not sure they are working yet.

Hooray for my almost birthday!  The big 29! This year I am in desperate need of smaller clothes.  Ive lost almost 80 lbs this year and 8 pant sizes!  Hope I can keep it off.

Today's Blessing: Weekends

Sunday, March 10, 2013

Decorating is Fun

Getting ready to make a trip to Kohls. It is so nice to pick out new things for the new house.  Feels fresh and clean.  Like starting over.

Met the neighbors yesterday.  Its like a mix of pleasantville and stepford wives.  Should be interesting.  They are so friendly.  Lots of them had family here too.  I wish we could wear our flaws on our shirts so I know who to steer clear of.  Like "nosey", "loud", "rude"...

Gonna be another busy day!

Today's Blessing:  help from family

Friday, March 8, 2013

We Bought a House

Today we settled on our new house.  What a good feeling to have a place to call home.  I am grateful.

This weekend should be great.  All that cleaning.  Stuff will be delivered on Wed so everything needs to be ready then.

How exciting!

Today's blessing: Shelter

Wednesday, February 20, 2013

Back in MD

Boy it has been a bumpy ride but we are finally all here.  Feeling better already.  I cant wait to get into our house and settle down and NEVER move again!  We cleaned and cleaned.  The pack out was easy, very nice people.  Probably robbed me blind but oh well. 

We miss our friends terribly!  Already planning some joint vacations to that helps. 

Jackson was so good when traveling.  He is having a hard time adjusting and isn't sleeping well but it will work itself out.  Now time to plan his baptism/bday party... send all ideas!

Our house got pushed back a week but I know it will work out.  I LOVE the house.  What really sold me was the water access a block away.  It is perfect for us.  Needs some work but that's how it is in MD. 

We are all healthy and together and that's what matters.

Today's Blessing:  Hopkins again on Friday for a brain scan or something to figure out these strokes...3 so far.  God Bless Doctors!

Saturday, February 2, 2013

All Parents Have Hard Times

I am sure that even the world's best mother and father have those days when everything bugs them, everything seems hard and things just don't go their way.  I am by no means discounting the difficulty every parent has at some point BUT sometimes I feel like I have it harder.  Trust me, I know that sounds bad.

There are lots of good days.  Jackson wakes up between 530 and 7 (on the weekends) usually.  Sometimes I can get out of bed, pick him up, change him, feed him and then play without too much pain.  It is usually pain I can overcome. 

There are some bad days.  Days when I hear him crying and it takes me a while to get out of bed, then I have to take a hot bath or shower to loosen up my joints.  Then I can shuffle to his room and hoist him out of the crib.  He will cry and fuss the whole time I am changing him.  I struggle down the steps to feed him and play (which is him playing and me laying on the couch).

I know lots of parents have these days too and I pray theirs are spread out farther than mine are.  You probably are thinking...where is your husband?  Have him do some of this.  He does a lot.  He has to work so early sometimes he cannot help.  But his definately pulls his share at night.  Doesn't Lupus go into remission?  Do all Lupies have these problems with infants.  I should mention that even though Jackson is just under 10 months, he is HUGE!  He weighs almost 25 pounds and he is practically walking.  He is so big I have to take 2 trips into daycare, one with just him then one with his stuff.

Today's Blessing:  Spending time with my boys at our community snow day. 

Thursday, January 31, 2013

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.

Friday, January 25, 2013

Dedicated to My Brother

The other night I posted and I completely forgot to mention the awesome time we had last weekend when my younger brother and his girlfriend came to visit us.  It is hard for me to remember what I want to say when I write these but be assured my brother called me out on it the following day.  They were here for a long weekend to help out and visit Jackson. 

We went downtown San Antonio to the Riverwalk and Alamo.  I am so glad I was able to take Jackson before we move and we got a cute picture in front of the Alamo.  Of course, Jackson didn't seem to be interested in anything but watching the ducks and pigeons.  We drove out to the "Cowboy Capital" Bandera and watched horses on main street.  We went shopping and rented movies.  We went to yummy restaurants and watched the Ravens beat New England.  It was wonderful and I miss them being here to help out.

Special Visitors

Jackson's First Alamo Visit
Playing with Uncle Rob

They were also life savers because they flew my cat back to Maryland.  It is heart breaking to have to give up a pet not because you want to but need to for medical reasons.  I am so thankful he is in a place where he is loved and cared for.  Thanks Mom!

Today's Blessing:  I had a strawberry margarita and it was awesome!

Doc's Last Day in Texas


Wednesday, January 23, 2013

Never Moving Again

Hopefully I can take a small break from Lupus talk.  The cardiologist said my heart is good to go.  The only thing I am left waiting on is the results from my pulmonary function tests from last Monday. 

Today was very stressful as we are preparing to respond to the sellers about fixes needed on the house before we go to settlement.  I am sure they will not fix everything but they need to fix the big things.  For example, the skylights need to be replaced, electrical work, chimney work.. more importantly, roof work and landscaping because water gathers near the house.  It is stressful because the house is at the top of our budget.  The decision to be made is if they do not fix these things do we back out of the contract and find something else?  We move on 15 Feb and will need to move somewhere.  I will be so glad when all of this is over.

Jackson is 9 months old.  I feel like a horrible mom because I totally missed his 8 month pictures.  I was a little busy around Christmas with all of the hospital visits.  Today we tried to take his 9 month photos and it was crazy!  He is moving around so much they almost all came out blurry.  His sticker would not stay on his shirt.  I gave up and this is what we got:

 
 
Today's Blessing:  Being one day closer to being back in Maryland with our families

Saturday, January 12, 2013

I'm Back, Finally

We just got back from our house hunting trip in Baltimore.  I would have sworn we would have found something during the first week but online house hunting is deceiving.  We looked at over 30 houses and most were crap!  They needed so much work that I just can't afford to do nor do I have to energy to do it.  Don't you know it came down to the wire with two houses we put offers in on and the very last day we finally came to an agreement and accepted one of the counters.  The inspection is on Monday, too bad we couldn't be there for that.  I pray everything goes well and we can settle on Feb 19th.  It was a very hard decision.  My hubby and I didn't agree on which house we wanted.  I knew we needed a rancher but he fell in love with the house with a huge yard and great neighborhood.  In the end, we did what was best and went with the rancher... no more steps for us.

Of course, things can't always go as planned.  When we arrived at the airport and got everything into the car it was acting weird.  Very jittery and then the engine light started flashing at us.  We had to call a friend for a ride and AAA to tow the car.  Thankfully, it was early enough the service center was open.  They are looking into it now.  Hope its not too expensive since we need all of our money for the new house! 

I think the stress and lack of sleep (Baby Jackson could not get into a routine and woke up every day between 1230-330) I was flaring the whole time!  My head was pounding and my joints hurt so bad.  I couldn't get used to sleeping on the hotel bed.  Thank GOD I am back in my bed. 

I had my first appointment with Dr. Petri at the Lupus Center at Johns Hopkins.  That outpatient center is massive.  The people were all so nice and on time!  I didn't learn much new but I did have 20 viles of blood taken, two were for research that I donated.  Apparently, 5 of the top research companies in the US rely solely on Dr. Petri's patients for blood samples to help Lupus so of course I gave some.  What is the difference between 18 and 20 viles anyway.  The results are trickling back in but nothing new or surprising yet.  My next appointment is in early April.  What a relief.

This week is going to be busy, as they all will be until we move to Maryland next month.  I have my pulmonary specialist, follow ups with the liver doctor and a vet appointment.  AND my brother is flying in on Thurs night.  Oh boy I hope Jackson gets back on a routine and that we all get some sleep.

Today's Blessing:  Being home

Tuesday, January 1, 2013

A Healthy Heart and Liver

Last Friday I went in for my cardiac cath.  I was nervous like I always am when I have to go in for a procedure and it was without reason.   The whole procedure took less than an hour.  It took longer to prep.  I was the first appointment but an ICU case had to kick me back by 20 minutes.  My doctor went in through the artery in my groin (awesome because part of the prep is shaving... yes, its embarrassing but I  was prepared for that).  They gave me some meds to calm me and it must have worked because the whole thing was over before I noticed.  I watched the screens and talked with the techs.  There were about 8 people in the room not including myself and the doctor so needlesstosay I have to add about 11 people to the list of who has seen me naked! 

The worst part of the whole thing is laying flat on your back for so long.  The funniest part was taking my walk around the recovery room with the nurse and seeing about 5 rooms with old men watching me.  I guess I was the only one to keep my curtain pulled... they acted like it was a social gathering.  So, yet again, I am the youngest person at my appointment. 

The doctor also ordered my Echo and it turns out I do have a small whole in my heart.  Apparently a small portion of the population has a whole that doesn't close up after birth.  She also said the pressure between my heart and lungs is 20 (normal is 15-25) so I am good.  Wish the first Echo didn't say it was 50!  So, I should be good to wait for the pulmonary specialist in a few weeks.  Still doesn't explain the pressure in my chest.

My liver doctor called yesterday too.  She says I have a fatty liver and all I can do is loose weight.  I will have to start eating better and working out I guess but maybe my liver hasn't caught up in the fact I just lost a ton of weight!  She said she was concerned about a possible autoimmune hep but that I do not have that.  Still doesn't explain why my stomach always feels full.

Today's Blessing:  My coworker who is watching my pup and our dear friend who is watching my cat while we go find a house!  Very blessed with great friends!