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.

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



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

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

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!

Johns Hopkins Lupus Center Here I Come!

Today I heard back from the Lupus Center at Johns Hopkins.  Since I am relocating in February I couldn't get in until Feb 28th.  I am pretty amazed at their response.  They wanted me to come in next week, which I would have done had I been in Maryland.  I am so excited to get to be a patient I hope I am not over-excited.  I also am very impressed that Dr. Petri checked my email and responded within a couple of hours.  How awesome is it for such a highly sought after specialist to be so attentive to her emails from potential patients.  I hope these are signs of good things to come.

Click HERE for the Lupus Center

Also, today my boss was able to make some great progress on getting my paperwork signed so I can go home early.  We are cutting out early on our 3 year commitment here in Texas by about 8 months so that means a lot of coordination and paperwork.  I hate to leave.  I love my job and coworkers.  It has been such a positive experience and it has gone by way too fast.  Without her I would be waiting a lot longer!  Every day is a day closer to being home and being surrounded by my family.  I need that so much it hurts sometimes. 

Today was so positive. 

Today's Blessing:  As if the above wasn't enough...Feeling well enough to have a productive day at work.

Almost Done Shopping

So this weekend we went nuts and spent too much money especially since we need to save for a down payment on our new house we will be purchasing in the next few months.  BUT we are almost done Christmas shopping.  We only need gifts for our secret Santa's and we are done!  It is a small Christmas but it made me really think and get creative. 

For a few years Christmas was getting kind of boring.  Don't get me wrong, I enjoyed spending time with family and friends but it was a lot of gifts and not enough fun.  This year we have been celebrating for one week so far and it has been so much fun.  Jackson makes everything better.  I am very excited to take him to see Santa.  Maybe next weekend.  We were in Target today and saw an old man wearing a Santa hat with a real white beard (probably a Santa on the side).  Jackson just looked at him and kept playing with his toy.  SO, maybe this is an indication that he will not cry when on Santa's lap.  Crossing my fingers.

Decorating is all done.  I didn't do much this year.  We bought a new pre-lit tree since our old tree took so long to put lights on and my wrists hurt too much to mess with that.  I hope I can find someone who wants it, it is a really nice tree.  This new tree is a little Charlie Brownish but its temporary.  When we know what our new house looks like next year we can get one that fits better.  The wreath is on the door and the stockings are on the mantel and that's all she wrote.

So Much to Be Thankful For

Happy Thanksgiving,

This year, more than most, I have so much to be thankful for.  I am glad to be alive!  I know it sounds dramatic but I really am.  For a while there I was pretty sure I might not be here.  I am so grateful to wake up every morning, even if it is to the sounds of Jackson crying for food.  I am so blessed with a wonderful baby boy.  He is perfect and not in the "I am the mom so he is the best" kind of way.  He really is the best.  I couldn't make it without my partner, my best friend, my husband.  He has made all of this worth it.  With my two boys everything is complete.

I am grateful for my loving supportive family.  My parents and siblings are strong for me when I cannot be strong for myself.  They are encouraging and hopeful when I need it most.  I cant wait to move home and be able to hug them and see their beautiful faces.  I am also excited for them to meet Jackson (he has had some visitors but many haven't had the chance to see him yet).  I miss my Pappy and I am said he never got to see Jackson.  I know he is watching over us now and he is so proud.

I am eternally grateful of my coworkers and friends.  Its those people who helped me not feel like a monster when I know I looked like one.  They treated me like normal and that's all I could ask for.  My friends who checked on me and comforted me. 

It hasn't all been bad this year.  As bad as it was, it was mostly great.  Jackson was born.  I got to spend my pregnancy sharing every experience with my great friend, Vanessa, who also was pregnant and due the same week!  I couldn't have asked for a better person to share that experience with.

It sounds kind of corny but I really hope you embrace all that you have to be thankful for and not just today but everyday.  No specific blessing for today since this whole post is about being thankful! 

Jury Duty, ugh

I received another jury duty summons yesterday in the mail.  I got a summons in October right in the middle of my first Lupus flare.  I was able to get out of it then due to illness but I didn't think I would get another so soon.  I do not normally think jury duty is a bad thing.  In fact, I would like to do it at some point.  However, right now I do not think its a good idea.  I am still trying to get used to my new meds and I am trying to see how I am affected by light.  I am going to ask for an exception.  If I can get them to excuse me until we move back to Maryland that would be great.

As for moving, there is a lot of planning involved so I am going to be pretty busy these next few months.  On the 27th I am meeting with my Rheumy and then I should know what date works for the move.  Hoping to get transferred to Johns Hopkins Lupus Center.  I want to make sure we move in between appointments and I do not want to have to wait to meet my new doctor for too long.  So not only will I be doing normal things like finding daycare, a pediatrician, family doctor and dentist, but I will also have to find a dermatologist, optamologist, rheumatologist, and I'm sure others.

Weekend plans include outlet shopping and yoga followed by Ravens football.  So ready for some relaxing with my family and friends.