I'm back to not sleeping so good. I have so much on my mind. I go to bed at 12-1am and get up at 5-6am...I am sure this will catch up to me sooner than later. I would like to say oh...I'm good on 5 to 6 hours of sleep, but I'm not. I have so much on my mind. Its hard to turn my thoughts off. I'm good when crisis strikes...it's just the aftermath. Im so tired of talking. me? Yup, my husband would say that's impossible. It's true...I've become a hermit. I used to hate to be in the house. Now I love being here. We all get along so well. My husband and I have our arguments, especially around very difficult times. We try to avoid it but it just can't be helped..life can be hard. I am thankful for the man that he is. Just need to be on the same page, he too has a lot on his mind and sometimes we don't always give each other the space nor the time we both deserve.
I've become a taxi for my daughter, Katie who is enjoying her time at theater...She got the part of Gertie in the musical Oklahoma! I'm so proud of her...this is her 3rd play and she has had 2 principle roles and one lead. Oklahoma! is going to be such a learning experience for her. It's a fun musical and I can see her growing up in front of me and it's very exciting to see where and what she will do. Time has gone by so quickly, it's hard to believe she will be in ninth grade...A Freshman!!! Dad and I keep giving her more room to grow...As we hold our breath...she's doing fine and has a good head on her shoulders. Since we homeschool...it was hard on her for awhile in 6th and 7th grade...a bit lonely but I told her to be patient...it's all coming and she realizes this now and is thrilled to be among kids who want to do the same thing. Katie has also realized that she is out of the drama crap at a regular Brick and Mortar school. We kind of missed that part of school and am grateful for it. My daughter is too. She has realized that with no "drama" she is able to focus on school and theater/singing without any negative effects. She is who she is and nothing has changed her.
Bruces birthday is July 3rd. He will be 11 and he's counting down the days. We got his surfboard and he asked for a pocket watch and fishing poles. There is a big bass in the lake behind our house and he needs a stronger rod to get him. It will be a great celebration for him. He deserves some good times.
I have been reading up on a book by Dr. Kahn called Ankylosing Spondylitis. I have read it before. It's an amazing book. I am sure that this is what
he has only it would be Juvenile Spondylitis... he doesn't have the huge signs on an
Xray of this illness except for the very small narrowing in the SI joints but he has
all the rest. Amazing! But it concerns me because of
his age and how hard it is to control this illness. It's very hard to understand why
this is all happening to him at such a young age. There is so much that is hanging over his head. He has a hard time falling asleep sometimes.
We are keeping him on 30mg of prednisone for the next week. About every other day he is unable to walk and is very tired and stiff...on the other days he's able to move about
but pain and stiffness is still there. The Costochondritis is still there and I am
worried it's apart of the Ankylosing Spondylitis. I noticed yesterday that his right
shoulder blade is swollen. The book explains that the whole trunk can become inflamed
which causes tenderness in the chest and the ribs in the front as well as the ribs
attached to the spine...this would mean that his illness is progressing which is very
bothersome. AS has the potential to decrease his lung capacity. When he holds his
breath his chest hurts. We are doing breathing exercises and exercises from the book
which helps to strengthen the the girdle. The book also states that AS in kids will
show up in the knees and shoulders with very little swelling and that you will be
seronegative which is what Bruce is. I wish that I could find a peeds Dr who
specializes in Juvenile Spondylitis. Dr Kahn is in England and would go there to meet
with him in a heartbeat! Maybe its a not far off in the future.
Since we are keeping him on prednisone a call to his Ophthalmologist is in order. He will need to be seen probably next week to check for Glaucoma and optic nerve pressure. Dr.N says this is very worrisome because Bruce needs the prednisone to keep down the
inflammation but can't have it due to problems with eyes. So he is in a catch 22...
That catch 22 is still there for his Ulcerative Colitis/Chrohns. If he gets a UC flare were in trouble. We have put the Colostomy off for awhile...both surgeons at All Children's and Cincinnati Children's said if meds will not do there job because it
affects something else then colostomy is sooner than later. The only way to control his
UC flare is with IV steroids at 60mg. So Bruce is being checked to see if he has
blood and inflammation in his stools monthly. We need to immediately put him in
hospital to get it under control quickly.
There is soo much to think about.
Its very hard to keep things going well all at the same time. I'm not sad just
wary. We have great days, good days, and bad days...most of them good despite the
flare that's raging in Bruce right now. He's exhausted...but pushes to do when he can
but tires out within a half hour. We will get past this...but for now I just push ahead and do whatever I can to make things easier.
Time for my walk before the rains....a bit of exercise is good for the soul.