Since February I have been very quiet. I stopped Facebook, the games were killing me and taking up a lot of my time...really...I'm 46 years old and can't believe I could get hooked on a game...that cost me money. My hubby and kids thanked me. There lucky they got fed...it just consumed me. I've also been very quiet with friends and my family. Well not my family, I haven't spoken to the parents in 6 years. They have no idea what our family has gone through and that is a very good thing....I can't please them which is what they want and think if I'm doing something correctly in there eyes. They are very cold...and play games..I know they would not give the kids there meds if needed because they think they don't need them.Huh! They would not agree with all that Bruce has gone through and they would also think that it's all my fault. Well he doesn't eat veggies or you kept the ceiling fan on when he sleeps and I think God does things which was hard on me to basically drop my parents from my life. I did not do this of my own free will. They took my daughter one day to St Augustine for the day...unable to get in contact with them for more than 12 hours...because they don't have to keep there cell phone on for anyone...they told me this. I had no idea where she was... they are both in there late 70s... This is how they did things. Had a huge blow out with them and then I was done. 40 years of shit! I think my life growing up was so dysfunctional it's almost funny. Thank goodness for therapy. Now I feel sorry for my parents. I'm so happy that they are not around...isn't that sad. I'm sorry I can't please everyone...I stopped being the good daughter who always did what they asked and expected of me...but they crossed the line. Having your grandchild with you is a privilege. They had no boundaries. They live in a big house with no friends or family and I think they like this...well I'm sure of it. They have never gotten in touch with me which just explains them even more. I don't know of any parent who would not try to bridge the gap between themselves and there children and there grandchildren.I stopped doing this, I just don't have It in me to be the fixer all the time.
So there you have it... I moved here to be close to my family so my kids could have grandparents... So much for that! Funny thing...both my kids don't miss them. It was always so tense when they were around. This January will be six years since talking to my parents and I think this was done so I could put all my efforts into my family. My duty is to my family and have no bad thoughts of how all turned out. I can't try to fix other people's problems, although I do try to help when needed. I post a blog because
of it being a useful tool and to see what others have done to help there children get through this awful disease.
Now onto Bruce...over the past couple of weeks I have met up with a few Drs. Orthopedic
back surgeon, a physiatrist, pain management specialist, rheumatologist and Dr N at
All Children's. Over the past few weeks Bruce has had a lot of stiffness in his
back...but up further...in his T3 to T5...normally it's in his lower back...which it
is, but now it's up his whole spine... tender in his hips, pelvis and well his whole
girdle. He is extremely weak but can still walk. He is walking on tip toes because
the pressure/tightness in his back is pulling on his hamstrings and making his Achilles
tighten up which is why when walking on toes feels better to him. His ankle flexion is
almost non bendable due to the inflammation. The physiatrist said his body is so
inflamed and his whole back is so tense it's in need of some major OT and PT therapy.
His whole pelvic girdle is just weak and was wondering if he had some bone loss as
well as both upper leg muscles are atrophied. She suspected juvenile spondylitis...if
it walks like a duck and looks like a duck...it must be a duck. The Ortho surgeon
won't call it that because he sees no changes on the xray. But Dr N suspects more.. He
already has a narrowing at the SI joints..so we will do an MRI as a baseline.
We upt his Remicade to 500mg every 3 weeks and is now on MTX shots again. 3ml and increasing ever so slightly. Bruce gets brain fog on the MTX or as Bruce put it he's gonna be as dumb as a puppy...which we laughed at because well that's funny coming out
of an 11 year olds mouth... dr N says we will do it slowly to see how much he can
handle and then drop it back if he gets as dumb as a puppy! Sorry but that was funny.
A bit worried about the amount of Remicade he is going to get but we have no choice.
We are currently on 200mg of Celebrex...by the end of the month his dosage will be upt
to 400mg of Celebrex...were gonna see how the MTX will do and the new remicade dosage
first before increase in Celebrex. He had his infusion last week and so far nothing
has helped him...we tried flexeril to loosen back but he uses it for sleep, which has
really helped. Sleep is so important. Nuorotin (Gabapentin) was tried but it caused
his stomach to feel bad and we absolutely can not have that. We are already worried
about the increase in the NSAID but we have no other choice. If he is taking that much
remicade and he gets a Ulcerative Colitis flare were in big trouble...the thought of
him having his colon removed is always looming over our heads. We check for occult
blood in stool through the lab instead of a colonoscopy every month...Yeah...every
month. We may be heading for a colonoscopy just because Bruce has said his stomach
feels sometimes like it did during a UC flare. If the remicade stops working we really
are screwed. I know Humira is out there, but we are approaching our last medicine that
would help his UC and Arthritis. Which leads us to NIH.
National Institute of Health is on board in helping Bruce so we are making plans to go to Washington, DC.
The hard part is that we are unable to give him relief. I know remicade can help after about a week increase. He feels worse since the remicade increase so maybe that's a
good sign. I can only hope. As of right now, he can not run,he has so much fatigue or
be active except in a pool. This we do every day. I think it has helped...his exercises
from Dr. Kahn who is a guru on Anklosing Spondylitis ( he has it) has helped as well.
You really need to be careful of his breathing...with AS there is a tendency to have
smaller lung capacity due to rounding or being hunched. We think this is not
chostochondritis but from the spondylitis.
Bruce starts PT and OT this week. Once again he never complains. Oh his lower lids are still cemented and we are still putting antibiotic drops in them. Negative on
labs...thoughts of another autoimmune disease is still there but in the back of my mind...cuz ya just don't know! He's seronegative....