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Showing posts from November, 2013

Fitting us for Heaven

Man.  November was not fun!  Even the last day of November...not fun!

Exasperating.  Discouraging.  Frustrating.  Exhausting...just a few words that come to my mind.

Here are some more.

Isolating.  Lonely.  Sad.  Doing it all...(okay, more than one word but BIG nevertheless), after Sam lost his vision for the morning, broke out in hives in the afternoon, sprained his ankle badly, Shelbie's dislocated hip and frozen knee...again... and just before my 10th nervous breakdown for the day...I realized that maybe this is just God's way of 'fitting us for Heaven.'  I sure hope that at some point, there is a reason for all these rhymes.  I hate rhymes, I hate riddles. I hate doing anything in vain.

Yesterday, we got the house decorated for Christmas, well, the front room anyways.  My house isn't big enough to put decorations anywhere else.  When it was all done, the house was still, the sun had set and the twinkle lights turned our little room into a Holy, Re…

Bone Marrow Biopsy #2

Sam had is second bone marrow biopsy for the year done today!  It was the weirdest thing to walk into the hospital with just one child, not my entourage.  It was weird for Sam too!  The kids have gone through everything together.  He was a trooper and in really good spirits.  He didn't seem nervous.

The nurses at our little county hospital are so great with the kids!  I can't say enough nice things about them.  We had Nurse Nicole today.  Nicole and I go clear back to our college days and I am always happy when she takes care of the kids.  She treats them so kind and has the same kind of humor we do so it's always very comfortable.  She was great to move things along so Sam didn't have a lot of time waiting around to be nervous.

Dr. Hancock was great as well.  He is always so happy and positive.  He is one of the few doctors who understands my desire to research and learn all I can about the disease process and healing things.  I have overwhelmed a lot of new docs la…

Short lived

It seems that whenever I think we were just given a lucky break, it is short lived.

Shelbie's transfusion went so well on Thursday, so amazingly well.  I thought the rest of the weekend would be smooth sailing.  Friday was good and early Saturday was good but then the headache and nausea hit all at once.  Not only that, but she had her knee completely give out Saturday night for no apparent reason.  I ran her over to the Urgent Care and he thinks she has a torn meniscus and something wrong with her ACL.

She has been having knee problems for nearly a year but since I was trying to pretend that more problems didn't exist, I haven't done anything about it.  Well, looks like we will need to have an MRI and stuff.

This morning, I had to rush Shelbie to the ER.  She couldn't move with pain and pressure in her head and neck.  Aseptic Meningitis finally set in.  She had called me three times at church but I didn't hear the first few rings/vibrations.  Then Sam started ca…

Nice for a change

Shelbie had her transfusion yesterday and I was so happy it went extremely well!  It was probably the best transfusion we have had in months and months!

They gave her a liter of fluids this time and I think that helped with all the nasty reactions.  Her blood pressure was stable the whole time and she didn't run a fever or get nauseated!  I can't tell you how relieved I was!  It was still a longish day but that's better than longish and miserable!

Sam is scheduled for his bone marrow biopsy for next Wednesday!  I know...the day before Thanksgiving!  I figured it was a good time since he will have a few days off from school and we usually just lay around stuffing our faces anyways and...I am set to lose my insurance on December 15th...or at least find something in the exchange and that is still a big question mark so I want to get things done sooner than later!

It's a little weird thinking that I am only taking one kid to the hospital for one bone marrow biopsy!  I ha…


Geez, it's amazing what happens when people listen!

It shouldn't take me 4 different doctors before I find one that will actually pay attention when I say, "I am in pain." and dismiss it with a scratch of the head because they really don't want to take the time to be helpful!

I saw my surgeon today in hopes that he would take out this extremely painful lump growing on the side of my tibia, it's about 1 1/2" in diameter.  He won't take it out, it's not safe to but he thinks he knows what it is...Phlebitis!  Bleh!  He said there are no deep clots that he can see yet but if I can't get this calmed down I could get into some trouble.

He did an ultrasound of my right leg and I was shocked to see little cyst like pockets of inflammation all up and down my legs.  I'm talking more than 12!  One cluster had 5 cysts all surrounding my vein!  I don't get it.  I don't understand what is happening to me.  There are at least 8 more starting to…

Survival of the Fittest

This is my mantra for the rest of the week...survival.  It's a bit of an oxymoron because none of us are fit enough to be surviving anything!

Tomorrow, Sam has his appointment with Oncology to get things set up for his second bone marrow biopsy of the year!  How fun.  At least we will be able to stay here in town rather than commuting to Seattle.  It is so weird to me to be doing a bone marrow biopsy with just one kid!  Even Shelbie asked why she wasn't doing one too?  Well, Sam's marrow was abnormal and funky in May so we are checking to see if he is stable, declining or if...maybe....things have resolved!  How great would that be?

Also tomorrow, I am meeting with a surgeon to get one of the lumps on my leg removed (the most painful one) or at least biopsied.  I figure biopsies are a waste of time, if you have to cut me open to get a small piece for the biopsy, why not just get the whole thing out?   I may even be able to have it done tomorrow!  I don't want to spend …

Bone Density

I was offered a free bone density test this week so I was all over that.

They were doing training with some new nurses and I was the guinea pig for them to learn on.  I have never had a bone density test and I have often wondered what is really happening in those hard to see places!

Honestly, I view myself as being 'fragile' physically.  Maybe it's because of the degree of pain I live in on a daily basis and the fact that my hair and nails are so brittle, I assumed that also reflected the state of my bones.  Not only that...but I come from a long, healthy line of Osteoporosis!

I don't really do the things they suggest like drinking milk.  I rarely drink milk unless it's laced with several cups of sugar and a healthy portion of Hershey's syrup mixed in and whip cream on top and a salted caramel drizzle doesn't hurt either!  If my milk was served like that 5 times a day...I'd be all over that!  I'd also be fat!

It was funny because my nurse friend w…

This will never work...

One last story from my hospital visit last week.  I had to have an IV while I was there.  This nurse walks in and I can tell by looking at her that she did not love her job.

She gets her stuff all ready to for the IV and pulls out a catheter from the package.  She looks at it, then looks again and tries to mess with something on the end of the needle with her un-gloved finger. She starts mumbling and she says, "This is never going to work."

I wasn't sure if I should ask her what wasn't going to work because I have veins you can drive a semi tractor through so basically, I could have threaded the catheter myself, or if I should just let her carry on a conversation with herself.  I let her just keep talking to herself.  I tried to play dead.

Then she says, "There's a darn hook on the end of this needle, those never work."  However, despite her convincing monologue, she proceeds to try to thread it in my vein.  She was right.  It didn't work.  In fact…


Sam has had hives for over two weeks now.  Weird.  I thought we had fixed it but they sprouted up again tonight while he was at his gym class along with nausea.

Shelbie and Spencer have battled this in the past and now Sam.  I'm not sure if it is the same thing but it's looking like Dysautonomia is picking up speed with Sam now.  That's too bad.

Next week, he will likely have his appointment to get his bone marrow biopsy set up and we will deal with it then. For now, Benedryl has become his friend.

It will be interesting to see what the doc says and maybe, if the stars align just right, his blood counts will be good enough to safely skip this bone marrow biopsy.  If not, we will deal with it.  At least we will be able to have it done locally and that will be very nice!

The Bind

Last week, I had to spend a large part of the day in the hospital.  Almost 5 hours of testing.  It wasn't fun as you can imagine.  Oh, I just realized, I never discussed the doctor's appointment prior to all these tests.

It's a very long story and by long, I mean, it would take three long blog posts to explain the details and who has time for that?   The short story is, I went to a new Specialist/Internist here in our lovely, too small of a town.  I had heard good things about him and he is fairly young so that usually means they are open minded and since nothing with us is standard and customary, I needed someone who was fresh and eager to learn and not afraid of unusual things.

I went very well prepared for the appointment.  I had a sheet of notes, well organized of concerns I had.  I told him when he came in that I had a 'laundry list' of issues and only wrote them down so I could keep it all straight and not forget anything.  He said, "Great."



I finally discovered the secret to dealing with Idaho Doctors!

I can't believe it's really this easy.  As I've been whining for the past however long about all things medical and the care-less attitude I've been getting lately from doctors, I decided there must be a better way to approach the problem.

Yesterday, when I found myself having to make yet another trip to the doctor I put my new plan into action.
The doctor walks in, "Hey Kathy, how are you?"
"Well, I'm great really but more importantly, how are YOU and I can't wait to hear how hunting season is going for you!!!!"

Seriously.  I seriously said that and I said it dripping with genuine sweetness...almost genuine and the tiniest pinch of sarcasm only I could detect, just to represent how totally frustrated I am.  Okay, I was not at all genuine but it was important I did that.

You see, it's hunting season here in Idaho and I am discovering more each year that these tough and r…

The love of a stranger

Every now and then, someone comes into my life in the most unexpected ways.

I have met the most loving people through blogging.  I haven't actually met them but we exchange thoughts through comments left on a blog post and emails.  Mostly, these woman are strong, honest, caring women who know what suffering is.  They know the meaning of the word tired.  They know frustration and they know sadness and anger that burns you from the inside out.

They also know joy, the kind of joy that comes without words to describe.

I love these women because they are authentic and honest.

I have had such a hard time lately with the medical community.  It hasn't been so much with the kids but problems with me.  From my mysterious ankle problems to now mysterious lumps that have plagued my body, even one in my left kidney.  The list is long.  I have been trying to resolve some of these things for months, at least 9 months.  I have been to multiple doctors and none of them are willing to addre…

Too much

There's an awful lot going on here, so much so that I have not had one second to blog much less do anything else.  It's getting to the point where I am no longer keeping up mentally or emotionally, not to mention physically.  The bulk of my worries is from this stupid Healthcare situation and the fact that Obama has not one brain cell in his puny head to do one thing right!

The latest insurance drama is that Seattle Children's has taken a stand against the Affordable Care Act and will not be participating in the exchanges.  That is serious and if it sticks, will be a huge, monumental hit to our family.  All of our doctors are at Seattle Children's.  All of them are experts in their field and all of them work closely with the one of three doctors in this country smart enough and caring enough to deal with Shwachman Diamond Syndrome. Seattle has been a huge blessing to us and the angst I am feeling over this is compounding daily, not to mention my continual worry over h…