This is not maternity leave

When I had my son I was lucky enough to have saved up enough leave to take off three months to be with him.  During that maternity leave I learned how to be a mother.  I hardly slept because I was either nursing or changing diapers or watching him sleep to make sure he was breathing.  I took him to his doctor appointments.  We went shopping, to the movies, out for dinner and we hung out at the pool.  It was an enjoyable time bonding with my new baby.  That is maternity leave.

What I am doing now is not maternity leave.  Since my daughter has been home, we have had so many medical appointments I have lost track.  Each week we have had doctor appointments or testing or visits by our home nurse or PT.  This week we had our follow up to her hearing test which she failed in the hospital (she failed again so we have another test scheduled for later this month).  We had an abdominal sonogram to check on her organs which they have been telling us were not in the "normal" placement (turned out all organs are right where they are supposed to be).  We had our visit with the home nurse (one more visit to go).  And we will have our PT appointment later this week.  Also, I had an appointment to get my flu shot and my TDAP to make sure I don't get myself or my baby sick.  I also have follow up blood work this week since my last lab work at Hopkins indicated very low iron levels which are apparently concerning now.  This is a typical week for us.

Regular baby bonding things like feedings are also more complicated this time around. We have to give her two feedings of extra calorie supplements and two feedings of iron supplements.  Since she is a preemie she sleeps all the time so I have to actually wake her to feed her (no, this is not wonderful, she needs to eat and letting her sleep longer is not an option) and due to her GI issues she is very gassy and has a more difficult time feeding than my son did not to mention the special preemie formula she is taking.

Yes, I get cuddle time and we are definitely bonding; however, it is not the same.  I have not been able to enjoy taking her out to show her off like all mothers want to do.  For the most part, we are on lock down at home to keep her from getting sick or sitting in doctor offices surrounded by sick people (go figure).

I am not writing this as a complaint about being home with her.  I am grateful she is such a fighter and that she has such wonderful health care providers and our insurance is awesome. I don't even mind sitting in my living room for hours watching her sleep and catching up on my "stories".  What bothers me is the misconception that this is somehow an enjoyable situation like I am on vacation or something.  Yes, I am glad I am able to be here for her when she needs me.  There is no way I could be at all of these appointments if I was working.  BUT, I would trade this in and return to work in a heart beat if she could have been born a healthy full-term baby who only required the routine doctor visits.  I would trade it all in to not hear comments like "well being stuck at home is better than being stuck in the NICU isn't it?" in response to my saying I would love to be able to get out even if just walking around the mall or having coffee at Starbucks.  YES, it is better to be at home than in the NICU (if you had been in the NICU yourself you would not have said this so I am assuming you know thing about what you are saying) but both options are not optimal.  Please do not make me feel like a POS parent for wanting for normalcy.  On the few occasions we have taken her out to run errands, people have commented about how surprising it was we took her out.  Weren't we afraid she would get sick?  Bad Parents!

My message to the haters who are jealous of my extended leave would be "don't worry, I am not enjoying myself as much as you think I am." And to the people who are concerned I am not making the best parenting decisions, "please stop worrying because she is my child, not yours."  There is not a human being on this planet more concerned with her well-being than I am (except my husband).

This is not maternity leave or a paid vacation.  This is leave to care for my baby who has special medical needs.  I am making the most of the situation; turning lemons into lemonade.

May is Lupus Awareness month

If you saw me today you would not know I have lupus. My hair is full, I have gained weight... a little too much if you ask my doctor,  I am strong,  awake, and happy. I suffer from lupus.  But it isnt bad today.  Please keep me and my family in your thoughts and prayers. I am blessed.   Knowledge truely is power...awareness changed my life.

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!

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!

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.

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.

Specialists, specialists and more specialists

Been through the ringer with doctor appointments this week.  Yesterday I went to the Cardiologist for my heart because of the Lupus I am at high risk for heart disease.  She said my blood pressure is a little high so I was sent to get a heart scan and an ultrasound of my neck where the arteries move blood to the brain.  She also said to get a blood pressure monitor and keep track for a week of morning and evening numbers.  I got a pretty good monitor from Costco so I will start that tonight.  Will be interesting to see the results day after day.  This morning I got to have my heart scan.  Pretty uneventful from what I could see.  The tech wouldn't say anything except my heart was beating fast.  Who knows if that's normal or not.  I can say it was much more enjoyable getting ultrasounds of Jackson.  So two days in a row I got to take my shirt off for people I've never met before, which is always uncomfortable.  No news is good news, anyone else hate that?   I hope they call me either way so I can relax or freak out accordingly.

I also had the lovely pleasure of seeing the GI doctor today for my inflamed liver.  She didn't seem too worried about it.  I did have 6 more vials of blood taken to run more tests.  I have an ultrasound on Thursday for my liver too.  If my results are not good I might have to have a liver biopsy to figure out whats wrong but she said she doesn't think that will have to happen.  SO after all of these appointments I do not have any more answers but I do have some piece of mind.  I am a little relieved that nothing stood out. 

I also started my Medrol pack today to help with my most recent flare.  I can feel it helping but how could it not?  I am on so many steroids I have to remind myself I'm not really feeling better, its the meds.  Can't push it.  And, some good news is I can taken some ibuprofen or a small dose of Tylenol.  That might have helped this past weekend.  Oh well.

A look forward.  Two ultrasounds and waiting.  Waiting for all of these results and hoping for the best. 

Today's Blessing:  Friendly LabCorp employees who make getting blood drawn not the worst experience in the world.  I used to hate giving blood but after having Jackson and now Lupus, I'm pretty much used to it.  8 vials in one draw is my max so far.

The good, the bad, the ugly

Flaring.  I pushed too hard and now I'm paying for it. 

This week started out great.  I went to my check up at the Rheumatologist and she said I was doing good.  She said if we were interested in more children we should do it soon while I'm doing well.  They took blood to check my numbers which seemed pretty high.  Out of the 7 tests she ran last time I was high in 6 to include kidney, heart, and lung function.  So she referred me to get my heart and lungs checked out.  The doctor said I can take any OTC drugs needed for pain and I could consume alcohol in moderation.  The day after this good appointment the nurse called and said my liver was extremely inflamed and I need to go to a GI specialist.  And I was told no more pain meds or alcohol!

So I here I sit on my weekend and my joints are all inflamed and I think I'm getting an ulcer in my mouth.  My fingers, knuckles, wrists, elbows, knees and feet are all swollen and sore.  My lympth nodes are swollen on my right side.  Its incredibly frustrating getting sick when I don't know what I am doing to cause these flares.  The Rheumatologist gave me a prescription for anti anxiety.  I have had great sleep all week because the meds help me not stress for hours while laying in bed.  I guess I pushed too hard at work.  I guess I can not work extra hours to make up for the lack of leave I have.  I guess I shouldn't care if my house is a mess and laundry hasn't been done in over a week.  Glad I thought enough a head to take off my wedding bands since they would definitely have cut off the feeling to my fingers.

So unlike the rest of the young mom's out there who get to play and cuddle with their babies, I get to rest.  They get to feed their babies without being in pain from tilting the bottle.  They can give  fun baths because kneeling next to the tub doesn't hurt them. 

I guess the Christmas wrapping will get done later along with everything else. 

TODAY'S BLESSING:  This is hard today.  I am blessed to know when I have had enough.  And blessed with a caring husband who reminds me it's going to be okay.

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.

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.

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.

New Symptoms? TMI

Last night was rough for me.  I was the only one up in the house.  The baby was asleep and so was my husband; pretty sure I heard the dogs snoring too.  I was up with stomach cramps.  Now before you read on this might get TMI.  I don't remember really what cramping feels like during that time of the month.  Mostly because I didn't get them too bad to begin with.  Then came Jackson.  For the last 6 months since I really haven't had any cramps.  I am trying Mirena so maybe that has helped (or hindered).  Who knows.  Anyway, these pains are in the middle of my stomach I think and they are fast shooting pains.  They aren't really super painful but they are annoying and worrisome.  I took some Tylenol and was able to fall asleep but it was very restless.  I wont even mention the hemorrhoid I think I might have.  I have never had one of those before but there is always a first time.  I looked it up and saw that these are more possible problems from the Lupus.  It just keeps getting better doesn't it?  Sorry to gross you out! 

I am waiting for the doctor's office to open to see if I can get in.  Better safe than sorry.  Plus, I am still waiting for the kidney results so I hope they came back.

Plus, I want to talk to my doctor about anxiety.  It comes and goes but, oh boy, when I feel it, its horrible.  That also keeps me up during the night.  It takes me forever to fall asleep because my mind is going too fast.   I think about everything, big or small, important or not... it is getting old. 

We will see what they say. 


*** Update****

The doctor told me to stop taking my Lupus meds for a week then easy back into them.  Apparently the meds are very rough on my body.  So far today feeling better but I had already taken my med this am.  I'll give it a day or two and call back if it gets worse.