Saturday, November 30, 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)

But...today, 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, Reverent place.  We sat there, quiet and for the first time in a long time...I felt my shoulders drop and I sunk into the cushions of the sofa and life felt like a good fit, snug. There was that elusive feeling of peace I have spent so much time chasing but never quite able to capture.

I wish I could hold on to these fleeting moments of quiet. Contentment.

It's so much work to stay in that fragile place.  It's so easy to let the world barge in and distract us.  One little thing, small, inconsequential really but still, One. More. Thing... and all hope and hard work spills out, all over and I want more than anything to at least splash a little of what's left on my face but it's gone, evaporated into the dry air of chaos again.  I start over.

There's a line from the Hunger Games that says, "Hope. It is the only thing stronger than fear."

So, heading into December I am letting hope try to get some footing in my life.  Trying to believe and hope that all the problems are just fitting us for Heaven. That this is exactly where WE are suppose to be, even though everyone around me seems to be strolling down easy street.  I can't wonder why though, it gets me nowhere.  We are here and as along as we can steal little glimpses of goodness, then I guess that's okay for now.

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Wednesday, November 27, 2013

Bone Marrow Biopsy #2

Samuel and Bone Marrow Biopsy 


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 lately so it felt great to be in a place where there is mutual understanding.

Sam did well and the procedure went well.  I was really hoping we could have put off this biopsy and waited until the year mark but his counts are pretty low and he has had more infections lately than usual so I'm glad we did it. Sam's first set of vitals when we got to his room were so low!  The nurse was amazed but did not freak out which I appreciated.  His heart rate was only 38!  His blood pressure was super low as well.

I got him home around 9:30am and had to leave him right away.  It about killed me to have to do that but I have been scrambling to find work since being laid off and I got a new house to clean two weeks ago.  Two weeks ago when I set today as our starting date, I didn't know this biopsy was going to come up.  She asked me if my kids' illness ever gets in the way of work and I said, no.  There was no way I could cancel.  Thankfully, Sam understood and was patient with me as I was gone for 5 hours cleaning!  Shelbie helped out to make sure Sam had everything he needed so I really appreciated that as well. Some days, the single mother gig is a lot harder than others.

This entire week, I have only averaged about 2.5-3 hours of sleep each night because of one thing or another.  Tonight, I have mountains of laundry to finish and clean my own house but I am hoping to get a solid 6 hours tonight!  That would feel like Heaven!  I am so incredibly exhausted...words don't even come close to describing the exhaustion I feel.

I will be so totally thrilled to see November as a distant memory!

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Sunday, November 24, 2013

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 calling and as soon as I could get out, I called them back.  She was so sick.  I rushed home to find Sam and her Step Sister there ready to take her to the hospital since they couldn't get a hold of me.  I felt so bad.

We got there and the nurse must have thought Sam and I were just some friends because she was not nice. She wouldn't even let me talk.  After about 10 minutes, she said, "And who are you?"
"I am her mom."  From there, everything turned around.  I think it also helped that the other nurses were asking me about Spencer and other things they knew about our family.  The doctor on shift had handled this for Shelbie before so things moved along to get her some relief. After 3.5 hours, 2 liters of IV fluids, Toradol, Benedryl, Compazine and Morphine, I brought her home to sleep it off.

The headache came back tonight but I loaded her back up with stuff...and she is doing better, the worst is over.  Hooray!

I don't get it, I am always being mistaken for her friend!  I realize we don't exactly look alike, she takes after her dad's side of the family but I also don't look like a 20 year old!  Seriously, they can't see the wrinkles, the bags under my eyes, the arthritic hands and humped back whale back?  Aye!  Oh well.  Anyways, I guess if I were a nurse, I wouldn't be too thrilled that a patient brought a bunch of friends, aka Sam and I.  Ha ha... such is life.

For a Thanksgiving week, we have a lot going on in the way of medical stuff.  Up next, Sam's biopsy.

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Friday, November 22, 2013

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 haven't done that very often and it feels so strange!  Not only do I feel strange but so does Sam.  Shelbie too.  They always go through these things together.

6 months ago, when the kids had their last biopsy, the boys' came back with concerning numbers.  They wanted them both rechecked in 6 months if their peripheral counts didn't look better.  I was really hoping we could avoid this but his counts are very low and he has had more infections than usual and he has been plagued with hives for 3 weeks.  The doctor thinks this is from the bacterial infection he had three weeks ago...his body is still revved up from fighting that.

So...we aren't in a holding pattern but the blessings of a good IVIG infusion for Shelbie was promising!


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Wednesday, November 20, 2013

Finally!!!

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 grow on my left leg!  He thinks it may have some auto immune origins and my body is just attacking the venous system.  That's pretty scary.   Another theory is that the estrogen replacement I take is either creating these problems or exacerbating them.

I'm going to have to really think about dropping my estrogen replacement.  Menopause sucks!  Plain and simple it sucks!  I suck without estrogen. This whole problem is not something I am too excited to deal with.
I don't even know where to start with all this meaning, how to resolve it.

He put me on a daily Aspirin regimen to stave off any risk of strokes and I have to wear compression stockings for 12 weeks!  My gosh.  It just never ends.  While I'm really happy I don't have cancer..I don't love this either.  Sometimes, I just wish they could cut it out and be done!


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Tuesday, November 19, 2013

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 a day in the hospital for this so I am hoping he can do it in his office with lots of valium and versed!  (I know...call me crazy)

Thursday is the dreaded IVIG day again!  Didn't we just barely survive the last one?  It came much faster this time around.  I haven't asked Shelbie how much she is dreading it but I know I am!  I feel sick when I think about it.

So, here's to a busy, busy week...one that makes me feel sick and twisted up.  I hope I don't puke on my shoes!

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Sunday, November 17, 2013

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 who asked me to help out, chose me because I am thin and on the other side of menopause by 3 years so she was pretty confident I would be a good sample of osteoporosis for the nurses in training.  She told me at the beginning of the test that they weren't allowed to give results, if I wanted results, I would need to see one of the doctors.  Fair enough.

Well, things went smoothly and nurses did it a few times to practice.  When it was over, they collected the data and printed the results.  My friend just about keeled over!  She said, "NO WAY!!! You are above normal! What the heck?!"

Yay...score one for me!  I was so happy!  She did give me a copy of the test and sure enough, I am way into the green.  She is also thin and about my age and her bones are not doing as well and asked me what my secret was.  I don't have a secret.  I do weight bearing exercises just about every day so that may be what's saving my bones.

All of a sudden, I don't feel so fragile!  


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Friday, November 15, 2013

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, she went through my vein, right through it to the other side and of course pulling it out did not feel that great because it had a hook on the end of it.  I continued to play dead.

She tried again and I swear, she would not stop grunting and complaining to herself.  Finally, she achieves success.  Sheesh!!  What a gem.

The moral of the story...I'm not really sure actually...I guess when in doubt...Play Dead.

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Thursday, November 14, 2013

Hives

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!

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Wednesday, November 13, 2013

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."

Well, clearly it was not great and I barely got done with the history and touched on the genetic stuff with the kids, only because he asked and his mind was blown.  He even said, "I am just really overwhelmed right now with everything you are talking about."
"I understand.  It's a lot and it's stuff you don't likely deal with every day but I appreciate you listening and taking the time." I really tried to be kind.
Then, he just goes off like a rifle! His bedside manner totally flipped and his puny sized Ego came out and that was the end of logic and reason and then he was just sort of rude.  He basically shut down and didn't go any further.  He ordered this huge array of tests at the hospital and then said to come back on a Saturday to discuss the results.  Who goes to the doctor on a Saturday?

So, here's the bind.  I'm not going back to him!  I don't need some doctor flipping out and being rude when I'm paying HIM to help me.  I'm not there to stroke his ego and make life easy for him.  But, now I have all these test results sitting in his in box and I don't even want him to have one part of anything having to do with me.  He works in this big, multi doctor clinic and I dislike the majority of the docs there and they know it and have the same feelings towards me and now, they all have access to my results!  It's so maddening.

I know some of the tests were abnormal so I have to find a doctor who can pull my results from the hospital and get headed in the right direction to 'fix' it all.  So, it means more doctor visits.  I'm so sick of doctors.  They are so cranky when they have to deal with anything beyond text book stuff.

I was talking to a PA about my dilemma and he said I needed to go back to the Internist and apologize for being too smart and overwhelming him.  Really.  Apologize for being too smart; for knowing more than the average bear?  There was a day when I would have done just that but those days are long since over and I don't really care if someone is intimidated by me trying to advocate for myself or my kids.  That's a load of crap.

So, it's back to the drawing board and meanwhile...There are a bunch of test results awaiting some kind of resolve.

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Wednesday, November 6, 2013

Eureka!

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 rugged hunters are really just over grown cry babies when they can't go hunting and have to work instead.  They can get P'O-D if they can't hunt when they want to.  Seriously, have you EVER seen a woman act selfish and whiny because she can't stay home and scrapbook?  Or Crochet Or Pinterest or whatever it is women do these days?  NO, we buck up and do what needs to be done.

Back to the story...out comes the phone and no less than 117 pictures from dead prairie chickens dangling by their feet to the head of a bear with his tongue hanging out the side of his mouth. There were 117 hunting stories to go with it and when men tell stories, it's complete with sound effects.  Yup, just like when they were little boys playing with their Tonka trucks...it's genetically programmed that men have to make sound effects when they tell stories.

So, when he was done, and I was done being interested anymore, we got down to business and he was actually helpful!  He didn't really resolve anything for me but gave me some really good information and a referral to the surgeon so I'm happy with how it went.

I will say this about the guy, he is a pretty good hunter, it seems.  I know nothing about hunting but ya, know, he has caught alot of stuff this season already.

Now, speaking of hunting.....check out these pictures of Spencer...he was asked to help a less active man gut his deer...Gross.

I totally feel the way this deer looks!  No kidding...It's the spit n image of me today!

There I am again...half dead! 
 Well, I'm off to the hospital for the day to see if I get to live another year with my left kidney and take a look at my half dead, cold heart.  So fun.  They said I had to come fasting but I could take my morning medications...they didn't say I couldn't take them with Pepsi...all of a sudden today, I decided to take 27 vitamins!!!  ha ha...just kidding. sort of.


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Sunday, November 3, 2013

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 address the problems at hand.  It has left me feeling downright crazy!  So frustrated that I have cried rivers of salty tears mostly out of frustration.  The only thing every doctor can agree on is that it isn't normal.

Well, I have found this kindred spirit via the internet.  Our children have so much in common in terms of the disease process.  We think alike and have been really good at 'being' there for each other.  It has really made the choking isolation I have felt lately feel a little lighter and more manageable.

In a desperate moment last night, I wrote her a lengthy letter.  I just needed someone to talk to.  Someone to witness the problems, validate me and remind me that God has a way of working things out.   She did just that.  She didn't try to fix anything, tell me I was losing Faith or convince me I just needed more hope...she just did what most people have a hard time doing...sitting in the mess with me!  There are no answers right now, just a bunch of questions, she gets that.

So, tonight, I am really grateful for my friend S.  Sometimes strangers make all the difference in the world.  God does give good gifts even if it is friends in far places.

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Saturday, November 2, 2013

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 how I'm going to pay for it all.  Only time will tell and I am working so hard to let it go because nothing I do or say is going to change the course of this situation.

Secondly, I am so sick to death of doctors.  It has been the most frustrating two weeks of my entire life.  I don't know what is going on with doctors but they are too busy, too proud, too something to do their job right!  If I hear the words "Let's wait and see" one more time, I swear I am going to lose it...fly off the handle...go postal...you get the picture.  Of course there are about a dozen stories about this to tell and I might get to them all eventually but for now...here's the latest.

I have been gone two days to Utah to take Shelbie to the airport and take care of some business things.  Sam stayed home with his dad.  Sam got sick.  I got home from Utah in just enough time to get him to the clinic before they closed for the weekend.  There is nothing worse than getting sick on the weekend.  We have been seeing the same docs here for about 9 years maybe a bit longer so they know us, they know Shwachmans and they know my kids.  They know all about the blood problems, bone marrow problems etc.

Now, so you know...in Samuel's entire life, he has never had a white count above 3.0, ever unless he is fighting a major infection and his body has actually decided to make some attempt to fight it, then, it usually jumps up to 4 or 5.  He is typically sitting around 2.3.   Well, today, his white count was nearly 6!  To jump from 2.3-6 is significant.  When the doctor brought in the blood work, he said, "Wow, he is doing great!"  I looked at it and said, "No he's not.  His white count is nearly triple his normal! It's high!"
"It is not high" he said.
"I know for a normal person, this is a normal count but for Sam, it is very high."  He actually started arguing the point.  I finally just said, 'Okay.' because I have not one drop of energy to devote to ignorance. Despite our differences, Sam does have bronchitis.  Here we go with a week of antibiotics and cross our fingers C-Diff doesn't show up....AGAIN!!

I have had my own horrible rounds with doctors and I will get to that.  For the past 4 years, I have gone to the doctors about the same three problems.  Every single time and every single doctor, and I have seen 4 different docs about it, they all say, "Well, I'm not too sure what this could be.  Don't worry about it.  Let's wait and see."  Four years!!! Four years this has been going on.  I finally had enough because things seem to be changing and I am in pain and discomfort.  I don't understand why doctors have become so lazy!

On a positive note...I got to get rid of the walking boot.  I just have to have the kinesiology tape wrapped on it daily and I'm still going to physical therapy but this is progress right?




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