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Showing posts from February, 2013

Going Viral

What a weird flu season don't you think?  Every one I know has the flu, the real flu or some other sort of virus that seems positively horrible and wretched.  Doctors seem to be handing out the RSV diagnosis like it's some hot commodity.  I've been feeling pretty confident that we would escape the nasty bugs this season.  Probably too confident.

Sam started with a sore throat this morning and a cough.  Now, Sam, he is the best at living in denial when he gets sick.  He could have a fever of 125 and he would still swear up and down he wasn't sick.  Later this afternoon, he started asking for some Vitamin C and cough drops.  When that boy asks for medicine, you now he is not feeling too well.

From out of the blue, I started feeling so sick tonight.  My joints are sore, my skin is achy, that's right, achy, my head is throbbing, my eyes sting and I feel like I could sleep for the next 10 years.   I'm wrapped up in about  30 layers of blankets and I'm sitting he…

Time for a little good news!

This post is about me.  I think I've mentioned before that I have Ankylosing Spondylitis, a genetic arthritis that causes your joints to turn to calcified bone.  I was diagnosed about 8 years ago but have been living in pain since I was a teenager.

Two years ago, I gave up going to my Rheumatologist because I couldn't afford the injections to put it into remission.  Just before Christmas, I decided I better go back because I was having more days filled with pain than usual.

He confirmed that the disease is progressing and I have already lost 4" in my spine to this disease.  He begged and pleaded with me to find a way to start the injections.  He offered to have his nurse try to help me get a grant from the pharmaceutical company that makes Enbrel.  So she did.  I finally heard back from them today.

It was kind of funny at first because the girl said, "I have great news, Enbrel will enroll you in their program and you will only have to pay a $6000 co pay."


The Matterhorn

I remember when I was much younger, my parents took us to Disneyland.  The only thing I remember about Disneyland was being terrified the whole time we were there.  I don't know who's idea it was to drag me on the Matterhorn, but there I was, screaming my guts out, crying, begging for it to stop and let me out!  It was not a fond memory.  I could never figure out why people would pay money to be scared to death and feel their stomach rise to the back of their throat.  Why?

I wish I loved Roller coasters and other thrilling rides but I don't.  I don't like those extreme feelings.  I really don't like feeling at all.  I think I have figured out that living with Shwachman Diamond Syndrome is pretty much like an afternoon on the Matterhorn.  It can be terrifying and white knuckling at times.  When the worst is over, it's still not over.  You stand there, blanched, by the exit of the ride, head hanging in a garbage can wondering if you can keep it together or is t…

Quick Update on Spencer

Spencer's been sick for quite some time.  He has a constant sore throat, random fevers, extreme fatigue and he aches all over.  It has been two weeks that he has pretty much slept through every single day.  He sleeps at every opportunity and only wakes when he has to like, getting school work done and working.

Tests are back and he has confirmed and active Cytomegalovirus or CMV.  Bleh!  It's not an uncommon virus and a lot of people get it but never even know they are sick with a virus.  In an immune compromised person, it never goes away. Ever. It's in the same family as Mono and Epstein Barr.  It can be dormant or less intrusive but he will always carry this virus around with him. It can become really serious because his body never mounts a response to it so this virus just has free reign of his body. Sad. Stupid virus. Stupid Shwachman's.

It's unclear if this is what is causing his white count to be all out of whack or if there is something else we are missing.…

Count it all joy

Wow, what a week!  Just another really weird week.   Last night, I took a few minutes before going to bed to read from a book I have by Joel Osteen, Everyday A Friday.  He talked about how everything we experience here in life really is for our good.  I believe that.  I also believe that some days, it's easier to see how good the bad things are and sometimes, it's not until you get a little farther down the road when you can look back and see things with a little more clarity.  I don't think there is anything wrong with looking back.  There is a lot to learn, it shapes us and changes us.  It's good for us.

Today is a day of looking back sort of.  I have been involved in some contentious things with my ex husband over the past 6 months which I haven't really talked about which sort of explains how hard the past year has been.  Nothing aggravates me more than contention and to be accused of things I just can't see.  Today, I make my final trip to the Attorney'…


Poor Spencer, sick again!  Sick with the paralyzing joint pain, body ache, sore throat, swollen lymph glands, nausea and the list goes on.  This has been going on sporadically for the past 2 months!  He started another round of antibiotics on Monday and again, I find he still isn't bouncing back like one does on antibiotics.

I was thrilled that he was so sick on the day we were meeting for quarterly check ups and blood draws with the Oncologist.  Now he could see first hand what I have been addressing in 50 or so emails.  Every lymph node in that poor kid's body is swollen and sore.  It didn't take long for the doctor to suggest that Spencer has Epstein Barr virus!  Duh!!  It totally makes sense.  I can't believe I didn't think of that sooner.

He had it 5 years ago really bad.  I think he missed 6 weeks of school.  I would take him to work with me and he would curl up under my desk and sleep all the day long.  He also had to wear sun glasses because the light hurt…

The learning curve

I will probably die before I ever figure all this out.  Sam met with his Psychiatrist on Monday, just a usual appointment, med check etc.  I was talking about the homeschooling stuff and how much I have seen Sam struggle, more than usual with his learning disabilities.  When it comes to reading, comprehension and math, it's pretty hard for him to do, especially when he isn't at school to hear that lecture.  I think he has gotten by with just listening and doing the best he can with what he hears.

The doctor said, "Why are you stressing about this?"
"Well, because that's what Mom's do, stress about grades and learning and stuff like that."
"Why do you keep forgetting that what is happening to your son from a physiological stand point is much more important than school work?"
"I don't know, what do you mean?"

He went on to explain that most studies done, show that kids dealing with chronic illness, high amounts of stress are w…