Lupus and Sprout Times Two

Wait, I have a blog that I haven't updated in about 10 weeks?  What is wrong with me?  How could I neglect to update everyone on my pregnancy which is already so precarious with the lupus issue?  Where do I begin?  This might turn into a long post so reader beware.

The last time I updated this blog I was 26 weeks pregnant with baby #2.  This is also the week I had my appointment with the high risk specialist who informed us that there was an issue that needed weekly monitoring.  My poor baby was not growing and the fluids she needed to survive and thrive did not appear to be sufficient.  We we scheduled for weekly sonograms and I was told, "try to keep her in there until 32-34 weeks."  That seemed like forever.

On 30 July 2015, we went back to the specialist who again told us her growth was not on track and, in fact, her fluids were decreasing.  Had I noticed any leaking?  Umm, no... wouldn't I notice leaking that much fluid?  Had I been drinking enough water? I think so, I did notice I was craving ice chips. I had a huge bag of ice in my office freezer graciously marked "Stephanie's Ice, do not touch or else!"  What else could I do to increase my fluids and get her to grow?  Apparently nothing. This is a horrible feeling.  There is nothing more in the world a mother wants to do than to protect her babies and I was failing my baby already.  Or should I clarify, my body was failing her.  What was different this pregnancy than with my first?  EVERYTHING...Lupus.  Damn Lupus.

This was also the appointment that my wonderful doctor said its time to get the steroid shot in case we need to meet our baby girl early.  I got the shot in my butt check at that appointment; the first of two important shots.  These shots make sure the baby's lungs are developed and can function (breathe) once she is born and they only take 48 hours to work.

The following day, a Friday, I went to work with a feeling I was not coming back.  I cleaned out my caseload, emptied my email, filled out 6 weeks worth of timesheets and basically made all of the necessary arrangements for my maternity leave to start ASAP.  That evening after work, I went to the hospital to get my second steroid shot.  I joked with the nurse in L&D that I hoped I would not see her on Monday....

That weekend is a blur now.  We were able to move up our maternity pictures (which is a benefit of asking a family member to take the shots).  It was fun to see the pictures and realize, at that point, my husband had gained more weight than I had and his stomach was the same size or larger than mine. At 29 weeks, this should not have been the case. It probably was another indicator something was wrong. We cleaned the house and organized/washed all of the baby's items (not sure why we did this now looking back).

Monday, 3 August 2015, we went to our 7 am appointment with the high risk specialist.  This time, since we were being squeezed in, we saw a new doctor.  The sonogram tech was quiet while she looked for something.  She left the room and came back and started looking again.  Finally she said, "got it" and went to get the doctor. When he came in he was very nice.  He said your fluids are extremely low but the good news is that the shots worked and your baby is practicing breathing on her own.  Time to do a stress test to see how the baby's heart is holding up.  20 minutes later we were told her heart rate dropped, which is concerning when combined with the low fluids.  Time to go to the hospital, we are delivering now.

And because we were not completely prepared for that news, we asked to go home quick for a bag and to take our son to daycare (he was home with my MIL).  We got home and ran around like crazy grabbing essentials.  We had to do a crash course for my MIL on how to drop my son at daycare.  The hardest part was trying to explain to my son that I was going to the hospital with daddy and we would not be home for a few days. We should have planned and prepped him for this long before.  What was I thinking?  Poor baby.  This ended up being a very hard week on him and I still hear him asking me if I am leaving him or when am I coming home.

My first child was born via normal and easy vaginal birth.  He came on his own.  My water broke around mid night and he was born at 9am.  That was the experience I had going in to the hospital.  I knew I was going to have a c-section since the baby had medical concerns and she was so small.  I did not have time to research c-sections and I had no idea what to expect.  I assume a lot of people or even most people who have them have no complications especially since people elect for that over vaginal birth.  My experience was not great.

The doctor and nurses were awesome.  My doctor was actually the doctor on call so I was grateful since she was aware of my situation.  I had to start a magnesium drip which I had the entire procedure.   This makes your entire body from the inside out feel hot.  I have a hard time getting veins for IVs so this is usually my least favorite part of any surgery.  I ended up with IVs in both arms because they needed to give me more meds/fluids.  One hour after arriving at the hospital I was wheeled down to the OR.

The operation took one hour. The baby was out in 15 minutes. We heard her cry and then we cried. Then the NICU nurse took her away.  I barely got to see her little face for 10 sections before she was whisked away.  The last 45 minutes was spent (1) digging and searching for the IUD and (2) a tubal ligation to ensure this never happens again (99% ensured).  Right as the doctor called for an x-ray to find the IUD, which was not in my uterus, she found it.  I had a spinal and 2 additional doses of Morphine for the pain that shot up my spine.  I thought I was going to pass out from the pain/heat from the Magnesium drip/the blow-by-blow of the operation that the anesthesiologist decided she needed to give us.  There is a curtain for a reason lady!  Please stop telling me which organs the doctor is moving around.  Seriously.

You spend an hour after surgery in recovery, which is nice.  Its quiet and no one can bother you,  It was sad for us because right next to us was a couple with a big loud and obviously healthy baby.  We could hear the baby cry and the parents swooning.  We had each other and someone else had our baby.  We were then taken to the NICU to see our baby, which I have no memory of (I did not get to hold my baby for a few days).  I do not remember much from this point until we were in our private room.  The rest of our stay was much like anyone else's with the addition of going downstairs to visit the NICU and the ability to get plenty of rest since we did not have a baby in our room to care for.  The food was horrible, the staff was great, and the drugs were fabulous.  I had many visitors and even got a slice of my favorite Cheesecake Factory cheesecake thanks to my little brother and his girlfriend.  Then it was discharge day and we went home alone (this was horribly sad).

Our little lady spent 5 weeks in the NICU where she was a resident rock star. She never required oxygen and she met or surpassed every milestone.  I visited daily spending hours holding her, feeding her and talking with the medical staff.  My husband visited as much as he could since he had to return to work.  We are so lucky we live close to the hospital so we could make frequent trips and not spend forever on the road.  Besides the obvious challenges of having a baby in the NICU, I found it difficult to schedule the visits on the weekends when my 3 year old was home and it was difficult to schedule visits for other family members since everyone needed to be escorted by a parent.  It was also difficult when her care times changed without notice or when you got a nurse you didn't mesh with.  (Care times are the set times when the nurses would give her her food, change diapers and take vitals.  This is when I needed to be there to hold her or the nurses would not take her out of the incubator.)

Another challenge I found this time around was breastfeeding.  Its practically impossible to nurse a NICU baby. I had a handful of times when I nursed her but she was so small she didn't have the ability to suck and swallow.  She was also fed via a feeding tube so she did not have the urge to try to nurse. Then when the tube was removed she was bottle feed around the clock by the nursing staff.  The only option you have if you want to provide breast milk is pumping. Exclusive pumping is hard work.  I had no idea.  Your supply suffers because your body is confused on how much to produce.  It is hard to pump every 2-3 hours around the clock when you are alone without a baby.  It is especially hard at night.  Your stress and emotions make pumping harder and then there is Lupus.  Over the course of 6 weeks exclusively pumping I had three bouts of engorgement and one confirmed case of Mastitis (I'm sure all three were actual infections but I only sought medical attention after the last case of engorgement.)  I was engorged, fevered, chilled and fatigued.  Basically I was useless yet I still had to pump which was so painful I would cry.  After this last time of getting ill, I decided enough was enough.  My baby is home. She has been feed breast milk her entire life thus far and I cannot do it anymore.  This is the hardest decision.  Ending nursing is hard on moms and its harder (IMO) when the choice is taken from you.  The guilt is overwhelming.  With my son, I nursed him for about 8 weeks. I had the same engorgement and decided to stop plus he had latching problems from the beginning and I had to use a breast shield (ugh, they suck).  It was hard then to stop breast feeding even though it was not enjoyable and it is harder now since she is my last baby.  When I tell people I was exclusively pumping, no one is surprised I can't do it anymore.  It doesn't make me feel any better.  Having lupus means I am susceptible to infection so if I had decided I wanted to push through and continue pumping, I would get infected again and again.  Not to mention the time it takes to pump, feed the baby, and then do it again in 2 hours.  Fatigue is not kind to my Lupus and I fear a flare.  The Lupus specialist confirmed my difficulties,including the breastfeeding, most likely can be attributed to the Lupus.  I had real intentions to do better this time around and it kills me that I failed...or that my body failed me.  Damn Lupus.

Our baby was discharged on 6 September 2015.  Since coming home, she has been to the pediatrician twice, seen a home nurse three times, had a EKG and heart echo, and had a blood draw for lab work.  We have yet to visit the ophthalmologist, complete her hearing test or meet with the county's physical therapist to set up a treatment plan (all of which are scheduled).  I ran out of paid leave on September 14th and had planned to stay home on leave without pay.  Thankfully, after all of the hardships, I was granted paid leave from my works leave share program until black Friday (I plan to return to work the Monday after Thanksgiving, who returns on a Friday?)  Being able to be home and care for my baby when she needs me the most and to get paid is a wonderful surprise.

This post is a lot longer than I intended.  I wanted to document my experience before I forget the details.  One day my baby girl may read my blog.  If and when she does, I want her to know how strong she is, how hard she had to fight to be here and how proud I am of this little wonder.  So many people played a part in this success story.  Again, life opened my eyes to something I had no knowledge of before. Unless you are a NICU parent, you don't understand.  Unless you are a NICU mother with Lupus, I can't explain it any better.

Living with Lupus and a toddler

Boy its tough!  Recently we switched my 2 year old son into a toddler bed (actually his crib but with a safety rail on the front so he can come and go as he pleases).  It is the same bed but the new found freedom seems to be too tempting for the little guy.  Up and down, in and out, we play this game many times each night before he actually stays in bed.  Then in the middle of the night he is out of bed and sneaking into our room a few times and finally around  430 or 5am, he has decided he has had enough sleep and comes in to wake us up.  I am hoping this is another phase that will wear off shortly.  In fact, the last few nights has been pretty good with him going straight to sleep.  However, I have been woken in the middle of the night and then bright and early each morning.  Doesn't he know we should sleep in on the weekends!?  So, how does having Lupus make this any different?  I am sure it doesn't.  My husband seems equally if not more frustrated each night and in the mornings I am usually the first one out of bed with the kiddo.  So, does having Lupus change anything?  Yes it does.  It isn't about comparing my reaction to this lack of sleep to my husbands.  He always needed more sleep than I did anyway.  I think the true gage would be to compare myself to myself prior to Lupus (if I can remember that self).  I think personally this lack of sleep is affecting me more because of the Lupus.  I would like to imagine that without the Lupus I would happily (okay, maybe that's asking too much) walk him back into bed as many times as needed and I would never loose my cool.  I would jump out of bed each time he wakes in the middle of the night and sooth him without cursing the early hours.  And when he comes into the bedroom around 5am and my alarm is set to go off at 510am, I wouldn't get mad and it wouldn't disrupt my entire morning. No, without Lupus I would be a better, more caring, understanding mother.  Lupus has made sleep so much more valuable.  HOWEVER, I could be wrong (and I hope to God I am).  I don't remember being a mother without having Lupus so I hope others can let me know that this is just a parent thing/mother thing and not a Lupus thing.  Other parents are just as sick and tired of their toddlers nighttime games as I am.  And yet look at me.  As I type this he is napping because that's the only time I get to blog.  I should be napping...

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

oh no... the Dentist!

Okay, I admit that I haven't been to the dentist in FOREVER.  But it isn't all my fault.  The dentist schedule the 6 month appointments 6 months ahead of time.  By the time the appointment I either had to travel for work or something else going on like moving to Texas.  In Texas it took forever to find a place to take new patients and then I got Lupus and the world stopped.

I have an appointment tomorrow with the same dentist I used to use before moving to TX almost 3 years ago.  I am imagining the pain I am going to feel tomorrow during my cleaning.  I am crossing my fingers that I do not have any cavities or other issues. 

Does anyone else hate how they always talk to you and ask questions while both of their hands and some utensil is down your throat?  Why do they do this?

I still have not heard back about my MRI/Echo/Bubble test results.  I go back to Hopkins on Thurs to see Dr. Petry so I will ask her if she has heard anything.  Busy week with medical appointments.

Today's Blessing:  Living about 3 min from Kohls.  I finally bought some pants that fit!  I won't look like a slob at work anymore.

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. 

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!

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!

I am becoming a hypercondriac

So today was crap.  The cedar is so high and I am hurting.  I had never had allergies until I moved to Texas and this year it is really bad.  I don't like to complain because a lot of people have allergies including my hubby BUT I cant breathe!  My lungs are sore and its hard to swallow.  My head has been throbing all day.  I took some allergy meds and I know its from the cedar but I cant help wonder if its something else. 

Every cramp, every time a limb gets tingly and numb, when my lymph nodes are swollen... I always think my Lupus is acting up.

I remember when I was worried about my kidneys.  Since then I had my liver biopsy and now I will be having a cardiac catheterization next week.  So now I wish all I had to worry about was my kidney. 

Oh to think we thought this whole thing was shingles!

Today's Blessing:  A crawling baby on the move

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.

Okay, I Am Pretty Scared

This weekend has been tough.  Starting Friday, my chest has been tight.  I thought Friday I might be getting a cold since I had a little cough and phlegmy-feeling my my chest.  After one dose of Dayquil and some Robitussin   now I am not sure.  The cough has pretty much gone away.  However, my chest still feels tight.  Is it my lungs or my heart? I have an appointment with the cardiologist tomorrow afternoon.  I will probably have to call my doctor in the morning since this doesn't seem to be going away.  I wish my pulmonary appointment was earlier but it is scheduled for late January.  I might have to try to call a different one to see if I can get in this week or next week...going to be hard with the holidays.

Tuesday is the liver biopsy.  That's scary.  I know they will give me meds to lessen the pain and the procedure only lasts about 20 minutes but it is still scary.  I am also scared about what they will find.  Why can't my battle with lupus involve just one problem or two or three?  I mean seriously?  I can deal with a lot but this is too much.  I am tired. Tired of being tired.  Tired of being scared.

This is not intended to be a pity party for me.

Today's Blessing:  Christmas cookies.  Yummy.

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.

I had an ephiphany

I was at lunch with my friend and we went to Maggianos Little Italy, one of our favs.  I asked the chef what he recommends with the least amount of garlic.  Of course, he thought I was crazy.  I found something and lunch was great. 

It made me think about garlic and the last time I had any.  I had a Caesar salad last Friday when my husband and I went out for dinner.  I didn't think about all the garlic in the salad but looking back I now think that was responsible for my bad weekend last weekend.  The garlic might have brought on the flare that ruined my weekend. 

Until I can discuss this with my rheumatologist I think I will stay away from garlic at all costs.

Today's Blessing:  The hour massage I had this morning and spending a little girl time with my dear friend.

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.

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.

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.