A Cruel Mystery

The Lupus Foundation of America started a new educational campaign for Lupus awareness called The Cruel Mystery.  I am new to this disease and I admit I had heard of Lupus but I never cared enough to look into what Lupus actually is.  Below is a link to the new campaign website and to lupus.org.  There are a lot of super smart people out there trying to find a cure.  Please take a few minutes to read about the research being done and ways you can help.

Lupus is a cruel mystery.


It’s one of the cruelest, most mysterious diseases on earth. Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.

There’s more to lupus than meets the eye; It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think, and strikes on a scale that the public does not realize.

The Lupus Foundation of America is embarking on a cross-country quest to solve the cruel mystery of lupus and end its devastating impact. We are going to communities across the nation to educate individuals with lupus, their families and their health care professionals, raise public awareness of lupus, and to urge Congress to increase support for lupus medical research. Join us in the fight to end lupus. Learn more about the “Help Us Solve the Cruel Mystery™ National Tour”.

I would love to attend the tour in Richmond, VA on 16 March 2013.  Maybe I will be home in Maryland  by then (more to come on the move from Texas to Maryland).

cruelmystery.org and What is the cruel mystery?

Today's Blessing:  Lupus.org and all of those responsible for the website.  I have learned so much from this site.  I am glad to have a trustworthy place to get my Lupus information.

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.

Made it to Hump Day

I made it to Wednesday working full days.  I am exhausted!  I am busy catching up but I am also done with that.  Today was spent on mandatory training, which might be why I am so tired... those are super draining. 

I am lucky to have the job I do.  While I was on sick leave they turned out the lights in my office as a reasonable accommodation for the lupus symptom of sensitivity to florescent lighting.  Like most people, my workplace is covered in florescent lighting.  Almost everywhere you go you have to deal with it.  Before I returned to work I went to Macy's and the lighting bothered me so much I thought I was going to have a stroke.  I got a headache, my eyes wouldn't stop blinking, vision blurred and I thought I was going to vomit.  I'm thinking this happened because of the lights but who knows for sure.

The only thing bothering me in my office now is the computer screen.  Not sure if its the brightness or the jumpy mouse but I have to figure that out.  Maybe its the font size.  Guess I know what I am doing tomorrow.

Today's Blessing:  Having lunch with my husband and Jackson.  It was great to see his little smiling face midway through my day.  A little pick-me-up.  I wish his daycare was closer so I could pop by more often.

Hand, Foot, and Mouth Disease..Ugh

Today was my first day back at work after being off for what seems like forever.  It went well.  I got tired around 130 but I persevered through it.  I am ready for bed already and its only 630.  I am glad to back in the office with people to talk to and something to take my mind off Lupus.  Not that I don't enjoy spending my time talking to my husband and other family members.

Jackson stayed home today with his dad and they went to the doctor since he hasn't been getting better.  He has Hand, Foot, Mouth disease.  That sounds disgusting.  It is apparently pretty common for kids to get this and he probably got it from daycare.  I am glad to know what it is so we can start getting better.  It is the worst feeling to see your baby so sick and not eating.  I'm crossing my fingers I do not get this sickness, not what I need right now.

Today's Blessing:  My coworkers.  I am happy I have a great group of people to work with and who look out for me.

Sick Sproutlet

Well we made it to the family photo yesterday.  Jackson had a fever (101.8) but the Tylenol took it down.  He did great until the photographer put him on his belly but by then we were finished anyway.  It is nice to already have my Christmas cards ordered, one less stressor. 

I thought he was doing better but this morning the fever is back.  So I am up early again today with a sick baby and the clocks fell back an hour.  Maybe I will get a nap.  I am lucky because he doesn't fuss too bad when he is sick, he mostly sleeps.  I'm crossing my fingers he keeps eating and drinking because if not we will have to take him in for emergency care.

This weekend so far has been very relaxing.  Just what I needed before returning to work tomorrow.  Other than watching football I have to find something to wear to work tomorrow.  Not sure what still fits since I lost so much weight from the Lupus flare.  Definitely not going to get rid of any clothes until I see how the medication makes my body get bigger or smaller.  I am excited to see my coworkers and get back to doing something other than sleeping.  And, I bet tomorrow at work I will want to be home taking a nap.

What is everyone else doing today?

Today's Blessing:  Health insurance.  I got a statement of coverage in the mail and my last visit to the ER was completely covered.  (EDIT: Got another statement and I owe $125.  Not bad considering the total was well over $5,000!  Still a blessing.)

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.

Focusing on the Golf Balls

 

I must be depressing to my husband.  He sent me the below link that a friend of his had posted on Facebook.  I think I have heard something like this before but like most people you read it then move on and forget.  This time I read it with a different outlook on life and I definitely think I need to focus more on the golf balls.

The golf balls are the important things:  Our efforts for everlasting happiness, our spiritual, emotional, mental and physical health, our family, our partner, our children, our friends.  Things that if everything else was lost and only they remained, our life would still be full.

 

Here is a link to the story

So, for my husband (and myself), I am going to think of something everyday that I am thankful for and that makes me happy (and it won't always be my little man).

Today's Blessing:  No one ringing the doorbell after lights out on Halloween and not getting egged.