In my next thirty years

Today I turn the big 3-0. I am no longer a kid, a young adult.  I am just an adult. And I am okay with that. I have accomplished great things in my thirty years. I am proud of myself and at a very happy healthy place in my life.  So in my next thirty years I am going to love more. Love my husband more and remind him more often that he means the world to me. Without him I would have crumbled,  he is my rock. I am going to tell my son everyday how special he is and how much I love him. I am so blessed with these two boys. I am going to take care of me...mind body and soul.  I will say yes to things I want and need and no to things I don't. I will make an effort to eat better, sleep better and get more exercise.  I have to take care of my heart in every way imaginable.  My next thirty years are going to be the best years of my life.

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.

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

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

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!

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. 

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

It's begining to look a lot like...

Ahh, who am I kidding?  It is in the mid-70's and sunny.  This is our third Christmas in San Antonio and I can't get used to the hot holidays.  Short and t-shirts again this year.  When we are in the house with the Christmas tree lit watching a holiday movie I can almost forget how hot it is outside and enjoy the holiday.  I don't mind the weather during Thanksgiving but there is something about a white snowy Christmas.

It appears Santa came early this year.  Jackson has more presents than any 8 month old should have.  I am sure its going to take him forever to open even one!  This year my hubby and I are not exchanging gifts.  I didn't even get him a card.  We have been through so much this year that no card or gift can compare to how lucky we are to have each other (I feel a little more lucky).  It will be gift enough when we get to move back to Maryland and we get just one night to go out to dinner and a movie!

Today is my first day without steroids and I feel it.  My wrists were sore this morning and the skin on my face is a little sensitive but other than that I am doing okay.  I still have the allergies I am fighting so I have a sniffly nose and a headache but that seems to be getting better too.  It looks like I might be able to enjoy the holidays without too many symptoms after all (crossing my fingers).

Today's Blessing:  A quiet dinner with friends and the glorious ham I know is waiting for me!

Early Merry Christmas

No more helmet for Jackson!  He had to wear this helmet for 11.5 weeks for 23 hours a day.  It started out hard but we got so used to it after a while.  For the next few days we need to watch him to make sure he doesn't bang his head on things that he normally would with the helmet.  I almost want to put it back on to protect him from his falls!  Great timing since he is crawling and climbing all over now. 

Surprising Best Day in a LONG Time

Yesterday at 0700 I showed up the Methodist Specialty and Transplant Hospital in San Antonio for my liver biopsy.  It was scary to be there for the procedure but the staff was great and it was a really nice hospital.  They took me back for blood work which was nothing, only 3 viles.  Then we were taken to the Cath Lab where I had to put on a gown and get my IV in.  My undies, bra and sweats were allowed to stay on, which was awesome but, don't worry, there were still boob shots by 3 new people.  I think I have forgotten the tally on that.  My blood pressure started out high but lowered substantially throughout the day.

After about an hour of sitting in the room, I was taken into the ultrasound room which turned into my operating room.  This is where the first 2 boob shots occurred.  I was laying on my back in the table completely covered except for a small area below my chest.  The ultrasound said this would be a good place to enter so a little "X" was marked.  When the doctor came in he made a comment about rather going through the side but he would just do it through the chest.  He numbed the skin and a bunch of layers beneath the skin.  Then he tried to jam the 8 inch needle into the liver but was blocked by cartilage.  He tried to push through but couldn't and that was not the most comfortable experience I have had.  SO, we had to ultrasound again on my right side where another "X" was placed on my ribs.  This is where the boob shot comes in because my gown needed to be lifted and my bra needed to come off that side because of where the band sits on my side.  I was pushed around so the machine would get a good view of my liver and then again when the doctor gave me some local anesthetics.  The side biopsy was much better than in the chest even though it stung more with the numbing agent at first.  I never saw the procedure since I closed my eyes but it was over relatively fast, would have been faster had they not try to go through my chest.  I was able to see the liver sample that was taken and it looked like a skinny red worm...skinnier than angel hair pasta... like a single piece of saffron.

After the procedure, I was bandaged up and taken back to recovery where my blood pressure was taken every 15 minutes as was my pulse.  I had to lay on my right side for an hour to start the clot in my liver so I didn't have any internal bleeding.  After the first hour, I was given a box lunch that doesn't really deserve any other mention...hospital food always sucks.  I was also given some meds for the pain that was in my side and shoulder.  The med was a combo of Tylenol and Vicodin.  It was awesome.  The pain left and all I was left with was a nice calm feeling.  A day that started with scared sad feelings turned out better than expected because for a few hours I could rest and not think about Lupus or why I was there in the first place. 

Recovery has been difficult emotionally because I cannot lift anything which means no lifting Jackson.  He is having a rough time because his first tooth is coming in.  Today I felt the sharp edges that have broken through his gums.  Needlesstosay, my husband is my trooper.  He has picked up so much slack and even though it has been rough, he never gives up.  I could not do this without him.  One more day of recovery to go.  It isn't too bad today.  I feel like I was punched in the ribs and my allergies are giving my lungs a rough time. 

Today's Blessings:  Friends who helped us with Jackson by making sure he safely made it to daycare so I could make it to the hospital so early.  Trusting someone else with your child is hard but they made it so easy.  I will always be grateful of them.

Crawling and a Liver Biopsy

Jackson started crawling.  Last night we saw him for the first time moving forward.  It is so cute.  I guess now we really need to be more careful about where he is playing.  I have left him on the floor in his room while I was getting his bath ready but no more!  He could crawl into the hall and fall down the steps.  It is awesome to see how proud he is.

I was finally able to get a hold of the GI doctor's office today.  Their office phone has been messed up for two days.  It is annoying when they call and leave a message to call back.  I have determined this is not a good thing.  If the results were negative they would either A, not call, or B, say the results were good.  When they don't say anything I have learned its because they want to review some bad results with you. 

My ultrasound shows a fatty liver but apparently that's not too big of a deal and it is very common for the San Antonio area.  Guess we eat too much Mexican food.  The concerning results are with the blood work (duh).  I have a positive ASMA and positive autoimmune globulin...whatever those mean.  What it means for me is a liver biopsy on Tuesday, 18 December.  No anti-inflammatory meds between now and then.  I have to be there at 0700 and my appointment is at 1000.  They say it takes about 20 minutes and I will be awake while they stick a needle into my liver.  The really crappy part is the recovery which takes 4-5 hours before I can go home.

SO next week I have a follow up with the cardiologist, liver biopsy, eye screening for the plaquenil (lupus med) and Jackson's (hopefully) last helmet appointment.  And too think I was going to call the dermatologist for an appointment for my hair/scalp and the dentist since a tooth is bothering me... when do I have time?

Johns Hopkins Lupus Center also contacted me yesterday to get a new patient packet completed, which I did.  They also said they still needed my files from the Rheumatologist.  So I spent a good portion of my day tracking the files down, which were sent to JH Lupus Center on 28 November.  They haven't responded so I am hoping they found them.  I have to get copies of all of my records from each doctor to send as well.  That's going to take some time, which is getting tighter and tighter...

Oh, and I have to plan our move back to Baltimore and find a house to live in, a daycare for Jackson, and tons of new doctors...

How can this week be so awesome (Jackson) and so horrible (everything else)?

Today's Blessing:  Video cameras.  Being able to catch all of the awesome on film to watch over and over is wonderful.

So Hungry!

So today I am writing early because I am trying to not eat or drink anything before my ultrasounds.  I normally wake up between 5 and 530 and drink a glass of milk so I can take my meds.  Not today.  Not even a sip of water when I brushed my teeth.  My appointments are back to back at 9, I know I can make it.  I just hope it doesn't mess up any of my meds.  Today's ultrasounds are of my liver and my arteries in my neck.  Maybe I get to keep my shirt on today... that would be a blessing.

Today's Blessing:  Sleeping in a little longer and having more time with Jackson to cuddle.

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.

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.