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

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.

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.