"Sometimes there's airplanes I can't jump out

Sometimes there's bullshit that don't work now,

We are God of stories but please tell me

What there is to complain about?

Oh, this has got to be a good life

This has got to be a good life,

This could really be a good life, good life"

-One Republic - "Good Life"

Living the "Good Life" in Chitown!

As I took Bob to work today on this sunny summer Chicago day, this wonderful song came on the radio and I was overwhelmed with a complete sense of happiness.  We turned up the volume and just took in the calmness of the morning and realized once again, what a wonderful city Chicago is.  It's the simple things in life that can make such an impact on our everyday life.  

This past weekend Bob and I (along with some amazing friends) celebrated Bob's 33rd birthday!  Friday night we had a wonderful dinner with Bob's long time friend and her new fiance at our favorite Italian restaurant near our house.  We have been "frequent fliers" to this restaurant for the past three years, and they are like family to us now.  We are always treated so well and they really go out of their way to make sure our dining experience is superb.  

(I just had to add this, as these two furballs bring  us such joy!)

Saturday I cooked breakfast for Bob which included some of his favorites. Of course we had to have biscuits and gravy!  We also had a relatively new favorite of Bob's, Baked Blueberry Cream Cheese French Toast.  What a great way to start the birthday!  We then explored the Field Museum and saw a Horse Exhibit explaining the relationship between humans and horses over the years.  And, did you know....a Zebra is a Horse???? Some of you may laugh at my naiveness, but this was a true revelation in my mind.  Who knew, a Zebra was actually a horse???  Let's just say, Bob had a field day with this one!! We also saw a Whale exhibit, which was amazing.  Did you know, the blue whales heart can weigh up to 600 pounds!!!  Yet one more crinkle in the brain, as I learned this fact.  We then enjoyed TRex in 3D and learned about the most intact skeletal TRex ever found.  The dinosaur was discovered by a lady named "Sue", and therefor they named this particular TRex, "Sue".  After being tourists in our own city, we had a pizza party at Bob's favorite pizza joint, Pizano's Pizza.  A little downpour couldn't ruin this day, as we were surrounded by some amazing friends.  Finally we wrapped up the big 33, with a few drinks with some more friends later in the evening.  All in all, a fabulous way to start the 33rd year of life, for my amazing hubby!

Happy Birthday to the best partner in life a gal could ask for, I love you babe!!

A quick update!

Last week was my routine 3 month check up with my lung doctor.  As I have stated before, I often get anxious about these visits, because what used to be a fairly routine and stress free visit, have slowly turned into somewhat uncertain visits for me.  I knew going into this visit that I was slightly more worn down than usual and I knew I was coughing a lot more.  So, it was not too much of a surprise when my Dr. listened to my airbags, she said they were "singing" to her.  Ahh, those high pitched wheezes sound so harmonious don't they??  If only those sounds were a good thing, I could make a record deal!  So, I have been in full "roid-rage since last Thursday and as always they have helped tremendously!  I usually don't have too bad of side effects from Prednisone, the worst being insomnia, which I have managed to keep under control this round with drinking lots of hot tea before bed, working out, winding down my day about an hour earlier than normal and occasionally taking an Ambien for the more restless nights.

I was a bit surprised to find out that on top of the Bronchiectasis, my Dr. along with others around the country who have reviewed my case, feel there might be something else going on.  Yes, I am being tested for PCD, which is an ongoing process.  I will be going to NIH at the end of September to be re-tested for this.  All signs and symptoms point to a high suspect of PCD, but we'll see.  This other looming condition is a very rare lung disease called Bronchiolitis Obliterans.  In a nutshell, it is a condition in which the smallest airways of the lungs are inflamed or scarred causing air trapping and severe shortness of breath.  It is often found in patients post-lung transplant and it has unique characteristics that are seen on a CT scan.  I reviewed my latest CT scan with Dr. McShane and could see where there was air trapping.  Unfortunately there is no easy way to test for this disease.  In order to confirm diagnosis, it would require a surgery involving an open lung biopsy, chest tubes and lots of pain...something I (along with my Dr) feel isn't necessary unless treatment would drastically change and result in improved breathing.  One option that was brought up, was to treat me like I had the confirmed diagnosis of BO, and see how I felt.  This would require extensive immuno-suppressant therapy to help control inflammation.  It's a fine line to walk because I am constantly battling infection and to lower my immune response could be risky.  However, I respond extremely well to steroids (immuno-suppressants) and for that reason, my Dr. believes it could be a potential good therapy to try.  For now though, we will continue the course as is, making no significant changes.  My labs came back with a slightly elevated white blood cell count (cells fighting infection) and higher than normal CRP levels (CRP levels measure inflammation in the body).  I also cultured "heavy" on the bacteria that is always present in my lungs, which could be why I wasn't feeling so great.  Good news, is that my FEV1 had not changed at all, despite all of this and my not breathing the greatest.  To remain stable at this point in the game is a very good thing, so I am extremely happy about that!

One final thing was that I have been battling losing my voice and my Dr. wanted me to get it checked out to make sure no damage was being done to my vocal chords.  Since I take so many inhaled medications, they can often have effects on one's voice box.  Yesterday I saw the ENT Dr. and had a scope done to view my sinuses, back of the throat and my vocal chords.  I always get queasy at the thought of someone sticking a camera up my nose (ICK!!), but surprisingly it wasn't as uncomfortable as I had envisioned it being.  After sneezing a couple times because it tickled and a a good view of my vocal chords it was over quickly.  Good news was that I don't have any apparent damage to my vocal chords, but he did say they were a bit inflamed and swollen.  This he believes is due to a combination of the meds, coughing and chronic sinus drainage.  I am just glad nothing serious is going on with those babies and in time they should heal (fingers crossed!).  

Overall, a fairly good visit with no big changes.  Thanks for all of the continued support and well wishes!! 

Breathe Easy!