December already? We just had Thanksgiving!!!!

December 2, 2013

A Monday morning it is, gray and dismal I think.  Adding insult to injury the septic truck just came and cleaned out our septic! Now the three words are gray, dismal, and stinky.  But somethings we have to do are simply stinky, but necessary.

Thanksgiving was alot of work for me physically.  I cleaned and moved furniture and sorted and cleaned again.  The fibromyalgia is so bad right now that I could hardly move on Thanksgiving morning.  But I overdosed on Advil and pushed myself.  It was nice to see family, and especially nice for Daniel who can see his family and also be in his home with his nurse.  Daniel is now 16 years old, and yes he had a spectacular birthday!!!  Lots of birthday cards came, and I am STILL working on them, but he has a giant mural of them in his room and some of them will be framed and put into scrap books for him to enjoy.  He loves looking at them.

I ate way too much pie.  Just had to say that.  After everyone had left, I had lots of pie.  I am feeling depressed so having a giant apple pie in my face was not particularly a good idea.  Oh well.

Daniel is doing pretty well. He just is not sleeping through the night.  He is having sleep study this month, to see if there is any apnea going on at night. I suspect, as does his pulmonologist at CCMC that he is having breathing issues at night.

Needless to say, I'm basically exhausted all the time.  When I can get a good solid nap in, I feel somewhat healed from the fatigue.  I did see a rhumatologist recently, but I just don't have the time to follow up on all of the things they want me to do right now.  I'm a pretty sick lady.  Kind of a hot mess really.  But I push myself through it.

One of the things I loved about the cards, was how many were sent from the support group families.  It touched my heart really really deeply.  They know.  They understand.  This journey is not a solo journey.... I think it is like a virtual giant NYC marathon of families all over the world.   We are all at different points in the race, but we are moving along facing very similar challenges.

Daniel is the love of my life.  As are my other children.  But he just has something in those eyes that is so pure, innocent, and true.  He brings out the best in me, that's for sure.

So where are we today, on December 2, 2013?  Daniel is at school with his nurse, Marques.  Thomas is at school at Newtown Middle School, he is in 7th grade, he's my little Baritone sax playing prodigy.  Sarah is back to college after 5 days home for the Thanksgiving break. She will have finals soon, and its amazing how fast the semester went by.  Henry is napping in his crate.  The cats are sleeping.  John is at work, he works at Hologic in Danbury, (breast imaging equipment people).  And Julie? Well....  I am sitting at my desk, in the quiet, writing.  By my side is an enormous PILE of bills, cards to send, and a list of people I have to call. Bloodwork, endocrine, flu shot, follow ups....  I am completely overwhelmed with how much everything costs, and simply trying to juggle it all.

I'm shivering.  I don't know why because it's warm in here.  It's all consuming, and quite depressing because I never get to the finish line of anything.  In front of me, in a file holder is a folder that says, "Nursing College", my biggest dream is to go back to school and get my BSN.  However, it is the farthest dream from reality right now.  I have too many issues in my house to contend with.

So carry on through this Monday morning, as gray and dismal as it is.  I wish I had the stamina to search Cyber Monday sales.  Christmas will just have to wait..

I'm sure I gained weight over Thanksgiving, when you are depressed, stressed, and have to walk on eggshells all the time, food becomes an obsession.  Yes, I need therapy with this obsession.  I wish I could get like, Oprah Winfrey, or Dr. Phil, or some famous person to scoop me up, put me on TV with all of my life story, and fix me.   I would love that.

Instead, I am going to spend time doing what is the best thing.  Praying.  Praying. Praying.  Time to go.  I need to upload videos to my Youtube channel, Julie Hasselberger.

Have a wonderful day friends.  Please do something kind for someone else today.  Acts of kindness are necessary food for the soul.

I'm dreaming of a white Christmas...and Spinal Fusion

November 27, 2012

There are snowflakes falling at 7:55am.  I must say its quite peaceful here.  Everyone is at school and work...and I'm home alone resting.  Because, I have a kidney infection that is excruciating. The pain started yesterday and I went right to the doctor due to the fact that my health is of great value around here and there is no time for sickness.  A typical UTI turned bad due to a badly diagnosed antibiotic.  Hopefully this heals up now...but I'm miserable.  Have so much to do...  but perhaps its a way for God to tell me...slow down Julie. Slow down and be calm. Look at the snow. Pray.  Focus. Blog. 

Thanksgiving/Daniel's birthday was November 22, and it was a very nice day. We had a quiet holiday, and I bought Daniel 15 Balloons to celebrate.  It was very colorful for him.  Then on the 24th 30 ish teenagers came over to celebrate Sarah's 17th birthday.  We turned the basement into a winter wonderland...it looked pretty and she had a great time.  I've always wished that I could rent out a hall for her to have a real party with a DJ and all of the special things that so many other kids have around here.  But I hope she knows that we do the very best that we can.

Last week...  Oh man.  The nurses and I spent two full days taking Daniel to pre-op appointments. Pulmonary, bo-tox for saliva, x rays, blood work, Surgeon consultation, anesthesia, physical therapy, etc etc.

Everything is looking pretty optimistic, but we have one more test tomorrow on his heart.  The curve of his spine has progressively worsened.  This totally needs to be done.

This is Daniel's Spinal x ray. The curve of the spine is over 90 degrees

There is a long list of things to be done before this surgery....  and I'm working on it. John is planning the care of the kids schedule at home.  I am working with the doctors on the post op recovery planning.  Where in the heck am I going to put a hospital bed? Looks like it will be next to my Christmas tree this year....   Special wheelchairs, nursing visits, nursing care, medicine, pain relief, physical therapy, a new wheelchair...  etc. etc. etc. etc.

Due to the crazy kidney infection I am losing this entire week of work.  And I wonder just how I can possibly pull off Christmas.  It will be small.  Small and quiet I am sure.

So today is Tuesday, and there are 6 days until surgery.  Tuesday... and I need to rest and recover.  And focus on those words that fly at me repeatedly, "Julie you have to take better care of yourself"

Duh.  You all don't think I know that?  Perhaps if other things around here shifted onto the shoulders of the people who are free to come and go when they please, then I could focus on my health.  Right now, I am 100% Daniel, Sarah, Thomas, house, cars, finances, and bills....  Phone calls to make, appointments to schedule, folllow ups, equipment, medicine, laundry, the animals, ....  and when someone's brain is so over taxed its a challenge to go to the gym.  I could just let things go, but then while I'm "taking care of myself" I will just obsess about the things that are not being done.

So for now...  as it snows and looks Christmasy and peaceful. I will pray for God's help.  For faith and complete restoration of mind and of body here.  Pray that somehow financial needs will be met over this month of December and that all will fall in line.  Pray that Daniel will remain healthy. Pray for people who are angry to find peace and forgiveness.  Pray for kindness and charity and love to spread like an epidemic everywhere.    There. I feel better.

Wondering, will there possibly be an early dismissal from school today....hmmmm  and I need to  call and schedule Sarah's audition for MaryMount Manhattan college..... and.... and.... and.....