Will Spring Ever Arrive?

I am so over winter.  I am over the cold.  I am ready for spring.  I wake up every morning in a house that is about 70 degrees in my summer pajamas (yes I wear them all year round) and think how great it is that it is FINALLY spring... but it isn't.  I have to dig through my draw for socks-where did all of mine go?  I can't wear my shorts and flip flops.  I have to wear the same old sweaters.  Lucky for me, I have had a rather quiet winter regarding my Lupus. I count my blessings and am a little fearful of the warm weather.  Last spring I had a nasty flare around my birthday at the end of March.  I hope this year my 30th birthday passes without any pain.  I hope I am able to celebrate with my loved ones and have a few days when I forget about Lupus.  I can't wait to open my windows and get some fresh air!  If I can't have snow, I don't want this cold.  Brrr....

Give me snow or give me sun!
 

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

I love my dermatologist

Today I had a follow up with my dermatologist.  She said my skin is looking good.  Its a little red in the cheeks but that is probably the result of healing from my flare.  She said my skin biopsy is healing very well.  The only complaint I had was my itchy scalp.  I was given a sample spray for my scalp, can't wait to see if it helps!  It's about time I go to a doctor who said I am doing well.  I only have to see her once every six months unless I have a flare.  In the event my Lupus acts up she is going to be the first person I see!

The dermatologist also said one of the positive things about my horrible relationship with the sun is my skin will be healthier; ie no wrinkles!  Finally some silver lining.

Today's Blessing:  My DVR.  It is so full of wonderful shows I can't wait to watch.  What did we do before DVRs?  I remember missing shows or taping over a show, it was so disappointing.

I Love Sundays

This might be my favorite day of the week.  Sundays are super relaxing around here.  This morning Jackson slept in until 7 and then we went on a walk around the block.  I enjoy morning walks because it is still cool outside and no one else is out and about.  Today we walked by the mailbox and around the block the long way.  I was pretty tired when we got back but it felt good.  So two days of walking (outlets yesterday) has got to be good for me.  I made sure to use a lot of sunblock and covered up.  Still getting used to by unhealthy relationship with the sun (thanks Lupus).  On the plus side, I got a new hat at Ann Taylor; it's so cute. 

Sundays are great days to catch up on house cleaning and laundry.  I get a lot of satisfaction when my house is clean.  I guess cleaning makes you feel good because you can see fast results and have control over the process.  With Thanksgiving this week I wanted to make sure our house is at least presentable. 

Wearing sweatpants and slippers all day.  Everyone needs a day a week to do that!  Plus, football means sitting back with the hubby eating some yummy snacks.

It doesn't get better than a lazy Sunday.

Today's Blessing:  I forgot to add a blessing to my last post so I will give two today!  First, having the ability to walk.  Being able to move makes you feel good and its good for you.  Second, finding a few pair of pants that actually fit for work.  I have lost 50 lbs since I had Jackson in April (7 months ago).  I think it is the best thing about getting Lupus.

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.

What a Week

Wow, it was a long hard week.  Just as I am getting rest and recovering from last week I am getting ready to start a new week that will be just as long and hard.  Thank God we have off on Monday so I can get an extra nap in. 

Let me catch you up on some great news.  Friday we took Jackson in for his check up to see how much longer he will be needing to wear his helmet.  He is growing so fast that it looks like he will only need it for 6 more weeks.  If he was a first time patient, they wouldn't even recommend the helmet now because his numbers were so good!  I could tell his head wasn't as flat as it was but it was GREAT to have the doctor confirm it.  Now that will be a wonderful Christmas gift.

Yesterday my husband and I went to our first Lupus support group and it was a good experience.  There were about 10 people and one other guy whose wife was diagnosed with SLE a month ago.  I really enjoyed listening to the ladies share stories about there Lupus.  Some things I haven't experienced yet (hopefully never will) but a lot of the ladies had very similar issues that I have.  We will definitely keep attending. 

And we made it to the zoo.  Jackson was more interested in the kids running around than all the new animals.  He enjoyed the flamingos and alligators.  It was nice to be out walking around and getting fresh air.  We learned that Jackson loves the baby food in the squishy bags.  It is much easier to use those than to have to carry food and a spoon.

Today's Blessing:  Having my Mom here for the weekend.  It was really nice having her here to help with Jackson.  Too bad she is leaving tomorrow.

Sick Day with Jackson

Happy Friday!

This morning Jackson threw up his formula right after I fed him.  Not a little spit up but the whole 5 ounces at once.  It scared me because his mouth was full of vomit and he didn't seem to know how to spit it out.  I was afraid he would choke so I pulled him up and the vomit went all over his crib (doing laundry now).  I had just dressed him too.  So, on with a new outfit.  Boy, babies go through a lot of clothes.  I took him to daycare since I thought he was just rolling around too much and made himself sick.

Once we got to daycare he had a bowel movement and then an hour later they called me and said he did it again but more runny.  He was covered in poo (another outfit change).  So, here I am.  At home with the baby.  I would have been home today anyway since it's my last day off before I go back to work on Monday.  I have been off for three weeks and, honestly, I am glad to have my last day with him.  He seems fine now.  And I hope he doesn't get worse because emergency care is pricey and crowded but don't kids always seem to get sick on the weekends?

I am crossing my fingers he is okay tomorrow since I scheduled a family picture session.  I was hoping to go to the store today to get my husband and myself new shirts for the picture.  If Jackson is feeling up to it, I guess I can still do that.

And, maybe a walk when the sun goes down.

Today's Blessing:  Waiting only 10 minutes for early voting.