Tuesday, June 30, 2015

Another SDS Angel

Yesterday, the Shwachman Diamond Syndrome world lost another sweet soul. She was 52.  One of the oldest living SDSer's and diagnosed back in the day by Dr. Shwachman himself.

While I didn't know her personally and never had the chance to meet her, I knew her mom.  Today, I want to pay tribute to her.

Some 20 years ago, I sat at Primary Children's hospital with Spencer and my husband sat at University Hospital with Shelbie.  The same afternoon.  Tests had previously be done on each child respectively.  We were at different hospitals because it was thought that they each had something completely different.  Shelbie was seeing an Immunologist and Spencer a Gastroenterologist.

We met up later at the GI's office to get the results of Spencer's testing.  I will never forget when the doctor came in.  She carried in her hand a single piece of paper telling me what my son had.  As she spoke, it became more clear that indeed, Shelbie had it too.  Shwachman Diamond Syndrome.  All the clinical signs were there, bone marrow failure, neutropenia, pancreatic insufficiency...

The sheet of paper listed some symptoms and a brief paragraph on how the disease manifests itself and nothing on how to manage it.  The prognosis was grim.  At the bottom, was a number scrawled out.  The doctor said, "Just call this woman.  She is going to know a great deal more than any doctor ever will."

This woman, was the mother of the sweet girl who passed away yesterday.  Joan and Michele were instrumental in forming a network of SDS families.

My heart goes out to Joan.  Not only did she spend endless hours caring for her daughter but she spent endless hours helping me care for my children. I know she has helped just about every SDS family at one point or another.  She was only ever a phone call away and I used her as one of my most valuable resources in navigating the early days of Shwachman Diamond Syndrome.

Joan was always patient and always had good ideas and welcomed advice.  She was my sturdy set of training wheels in our new world of SDS.  As I regained my balance and life became larger than I had expected, we lost contact for a bit.  In the past couple of years, I have been lucky to be reacquainted with her.

I feel a trace of heartache as I think about what her days must be like without her sweet Michele.  I can't even imagine how you go from being a caregiver around the clock for 52 years, to not being needed in that same way.  I'm not sure how you pack up decades of love that continually spilled out around you.  I'm not sure where you find your purpose again.

I suppose like anything, there will be a learning curve; a walk through the land of grief, where the terrain is almost as wearying as SDS itself. I'm sure she will find the void of missing her daughter and surely, best friend, bigger than she imagined it.  I'm sure that she rehearsed the possibilities of this day without Michele but I'm sure, its nothing like she imagined.  Things never are.  Often they are much better in the worlds we fabricate out of more gentle materials than real life.

Oh how I ache for what she is feeling.  Something I hope to never experience but if I do, I know that if Joan can do it, then so can I.  She is a great spirit.  A gentle spirit.  A mamma bear.  She scatters those qualities around like confetti, bright spots for the rest of us still journeying along the bone marrow failure paths.

So, another goodbye, another angel gone, another lesson learned about grief but still, another reminder that Heaven is not that far.


Sunday, June 28, 2015

Defending and Protecting

This subject has been on my mind for over 6 months.  I have written countless pages on the topic in my notebooks.

Today is the day, I think I want to make sure it gets to my blog.

Defending and Protecting.

I heard this idea several months ago when listening to a talk by Byron Katie.  I think I may have mentioned her before on this blog.  She is a public speaker with the intention of ending suffering.  Suffering of all kinds whether it be suffering inflicted upon us, or suffering we inflict upon ourselves and everything in between.

She has this to say about the difference between defending and protecting.  'Defense, is the first act of war.  When you try to defend, you become part of the war.  You spend more time in pain, anxiety, fear, restlessness to the point that you are "mentally running the world and asleep in your own."

If you are into social media even in the least bit, you will see that there is no shortage of defense in the world today, especially in light of the Supreme Court Ruling on gay marriage.

I will readily admit that I have an opinion on that topic and I will admit that when I heard the news, the first thing I did was gather my children.  Not to defend what I believe or what I think they should believe but to reiterate to them the things that I hold sacred and dear; the things that matter to me that I will always protect.  I appreciated the opportunity to talk about what we need to protect; to talk about the things that are important to them that they need to protect as well.  It's not just about gay marriage.  It's a far broader dilemma than that. It's about love, respect, peace, safety and more.

The world is no longer a safe place.  It's no longer safe to share a thought, let alone an opinion.  In the past week, I have had to defend this blog and things I said recently.  I thought long and hard about taking down the post in question but I chose not to.  This is where I write the stories of my life.  This is where I am figuring out what I'm all about. This is where I record MY truth.  Not yours, not the neighbor's, not the country's. I'm learning that people will not love what I say.  It's weird for me to type this since this blog is hardly political or anything else that could possibly be controversial.  But it's true...welcome to America...land of the your free to say anything as long as it's the same thing everyone else is saying!

Another experience I had this week was with a support group I belong to.  One of the ladies posted about the medical abductions that are becoming more and more common.  I for one am interested in this subject since I have seen how easily this can happen.  While it hasn't happened to this extent to me, I have been accused of other things that could have led to losing my children had the wrong ego been in my path.

It became such a controversial subject.   Again, defending one or the other adds to the war and fuel to the fire. Feelings were hurt.  Friendships ruined.  Protecting my own kids through knowledge and understanding is far more productive.

It just saddens me that we can't all get along.  That we can't respect each other's story and see that we each stand in a very different place.  Not a better place, just a different place.

There is so much around us in need of protection; our families, our children, each other.  That is what is really heartbreaking.

Saturday, June 27, 2015

Change...it's good.

Well, it only took me half the day but the new blog header is up!

I like it.  It's clean, simple, uncluttered...sort of where I'm at in life.   Trimming off the 'fat' of life.

This year has been a year of change...without a doubt.  Everything is in flux.

With all the changes, I've come to realize that not only does the blog need a makeover but so does my life.  I've enjoyed a couple of classes I signed up for this year.

I loved the Thrive online class by Arianna Huffington.  Though I didn't participate in the online discussions, I did manage to get through each class.  It's about making the changes you know you need to make in your life in order to change and get out from under the ongoing stress.  I loved her ideas on meditation, unplugging from technology, wisdom, wonder and giving; all in hopes of thriving in life, not just surviving.

Everyday, I have made attempts to spend a few minutes just being quiet and still.  It's been like a big sigh.

More recently, I signed up for a blogging/writing class.  There has been a great deal of valuable information and challenges.  Sadly, I started the class with a million thoughts running through my head and then just like that, they were gone.

All this change has brought me to a crossroads.  A place where I'm learning what I want, what I don't want...Okay, I still have no idea what I want but I have lots of ideas on what I don't want!  That's something! I'm realizing who I want in my life and who I don't. I'm taking chances, doing things I would not normally do.  Learning to say no but more importantly, learning that 'NO' is a complete sentence.  How liberating!

So, though I don't entirely know what is coming next, I do know that I can count on things changing about every other day.  I still don't love it but...so it goes.


Finding Jesus

Today, I sat at Rehab waiting for Shelbie.  I was just sitting there when a gentleman came up to me and said, "Have you found Jesus?"

My first reaction which isn't always the best reaction was...Oh, I didn't know He was missing.

I didn't really say that out loud, I used my 'inside' voice.

My actual response was, "Yes, I have found Jesus."
"I knew it!" he said excitedly.
"How did you know that?" I asked.
"Because you smile all the time.  People who have found Jesus smile no matter what." He explained.

We had a little chat about life.  Such a nice guy.  He said people had been talking about Shelbie and our family.  He was sad that such a young girl had to be here with all the old people who have worn out their lungs and heart.

I said, "It's not that sad.  She likes it here.  Everyone is so friendly and so much fun!"

He went on to tell me about the 4 heart attacks he has had, one stroke, COPD and flat lined twice in the past 4 years.  BUT...he said, "After I heard your story, my problems are nothing."

"I wouldn't say they are nothing!  I wouldn't want to deal with any of that!  It sounds scary.  I don't think anyone has worse problems than another, just different.  We are all learning the same lesson, we just arrive from different avenues.  Eventually, all roads converge at the same place.  Acceptance. Long suffering.  Empathy.  Finding Jesus."

I can't even believe I said that actually.  I don't typically get into conversations about religion or politics.  It seems in this world, no one is allowed to think outside the box or think differently from main stream rhetoric.

When you start comparing the size of crosses we each bear, then you have no choice but to deem the world or God, unfair.  It's not unfair.  It just is.


Thursday, June 25, 2015

Just like that...

I can't believe I have missed nearly a week of blogging.  It's been one of those weeks that has been crammed with everything that needed to be done at the same time.  I've been burning the midnight oil and then some.  In that past 48 hours, I have only gotten 6 hours of sleep!

So, here's the run down of the highlights.

We've had hospital appointments every day this week but Tuesday.  Tuesday night, I left on a little adventure.

I barely go anywhere without my kids.  This year, I've actually taken two road trips without my kids. It's interesting to be alone after so long of having company.  It's so strange not having someone keep track of the music we listen to, the temperature in the car, the temperature in the hotel room, where we stop, when we eat, what we eat; it's different.  I'm not use to it!

Anyways, my destination was Salt Lake City.  I've been talking to some people in Colorado who have a machine that realigns the frequency in your body.  Spencer knows them and he tried the machine a few times a week.  He claimed that it made him feel so much better.  These people have been trying to get me to come to Colorado for a year now.

Yesterday, they were in SLC at a Holistic Healing Conference.  She asked me several weeks ago if I would consider coming.  I said yes, not really thinking about how hard it would be to get away.  At any rate, I hated to let her down so I made plans to attend.

It was and interesting day.  I met them and they had their doctor with them who invented the machine.  He also does muscle testing so he ran me through the process.  I've never done anything like this before and I found it to be quite interesting.

When he started, he couldn't get my frequency 'turned off'.  He said, "You need to relax.  You must have a lot of anxiety."  I just kind of laughed but really wanted to cry.  Yes, a lot of anxiety is an understatement.  He finally had to put me on the machine before he could do the muscle testing.  Anyways, long story short, he found that my stomach is sitting too high and pushing up on my diaphragm which was cramming my lungs.  He asked if I was often out of breath, stressed, feeling resentment etc.  He was right on every count.  What's interesting is that he noted problems with my gallbladder.  I've been having a hard time eating the past few weeks.  I always feel sick after.  He also found that I was fighting against absorbing Vitamin B.

He hooked me up to this very simple machine for a few minutes and reset things.  To be honest, I didn't really feel any different but I imagine it takes several visits on the machine for it to make a difference.

I have always considered myself a 'healthy' person.  Not a holistic kind of person but I do dabble in alternative therapies but maintain a good balance.  This conference had all sorts of vendors set up and as I wandered around, I felt like a lot of it was kind of weird.  I realized that on the spectrum...I'm not really all that natural and healthy at all.  In fact, after tasting the vegan brownies made with dates, I felt like I wanted a chocolate donut chaser!

Today, was IVIG for Shelbie.  Nothing out of the ordinary but these days at the hospital are so exhausting.

In other news...I am in a blogging makeover challenge so, you may see some changes over the weekend.  I'm a little behind but isn't that par for course these days?


Sunday, June 21, 2015

Father's Day

Father's Day marks the last of the run on 'hard' holidays to celebrate.  Why?  Well, today marks 10 years I've been divorced.  

Mother's day was the day he told me it was over.  Father's day, it was final. 
We did what most divorce couples do...follow a strict visitation schedule set up by some random judge. 

This year, things have been different.  He is divorced now, from his second wife.  She always hated the kids and I and hated the idea of being nice and civil to people.  Now that they are divorced, things are different for our family. 

 We spent Christmas Day together as a family.   We spent New Year's Eve together as a family. We spent Mother's Day together as a family.  Today, he invited me over to have dinner with all his nieces and nephews and of course our kids.   I have not been feeling very good yesterday or today so I just went over for a short time.

Before I left, Shelbie was saying how it feels weird that we do so much together.  She thinks that people who see us think it's weird too. She even thinks that the nieces and nephews find it odd.  Maybe they do.  Maybe it is.

But...here's the thing.  I would much rather do something out of the ordinary, even weird, than to feed contention and harbor anger.

It's better for the kids that we get along.  I don't see anything wrong with trying to be friends.  When I tell my kids that they need to be kind and loving and forgiving of people, tolerant and accepting...I mean it.  Those aren't just nice words I throw out there hoping they will stumble upon and find a good fit with.  It's important that I practice what I preach.

I realize that it may seem unconventional.  I told a client of my plans for Father's Day and she couldn't wrap her mind around the fact that we would spend time together.  I imagine that is the reaction from most people.

This brings me to my next point...and the answer is no.  People wonder if this means we are reconciling.  No.  The answer is no.  I don't see that happening but I do hope that when he settles down again, we can continue to be friends.  Nothing was worse than the anger and contention we suffered for many years.  It's better to be a peacemaker, to be kind and helpful...just as you would be to any friend.

So...this is my unconventional journey.  We don't seem to meet the proverbial standards on anything!  Oh well...such is life.

I'm glad to be celebrating Father's day.  I'm glad I was able to talk to my own dad who has been a great example of Fatherhood, providing and protecting his family.  He has been a great grandpa to my kids too.  I love seeing how much my kids love their grandparents!


Wednesday, June 17, 2015

I would rather...

      Watch my kids go through bone marrow biopsies than watch Shelbie struggle one more day at pulmonary rehab!  I can say this with 100% certainty because there was a time when they always let me watch the bone marrow biopsies on all three of my kids!  Always!  Those were the days!   It was hard to watch and painful to watch, even though most of the time, they were asleep.  I even witnessed twice, once for Shelbie and once for Sam, when they used no sedation!  Even that!!!  Was easier than watching Shelbie at rehab.

      It's nothing new for her to say she is short of breath.  My pat answer is, "Oh well, just take a break.  Slow down.  You'll be fine."

Seriously!  Today was wretched. It took everything I had not to cry.

At one point, the nurse called over the therapist and they were watching the computer screen, then one of them called out to Shelbie, "Shelbie, are you doing okay?"

"NO!"  She was gasping for air but she had oxygen on!
"We can tell!" One nurse called out as the other was headed in Shelbie's direction.
Apparently, everything had set off alarms- her heart rate skyrocketed and her oxygen sats tanked.  I'm not sure what her blood pressure was doing but I assume it went high as well.

I just sat there, not really knowing the extent of the problems and tried to continue the conversation I was having with another patient at the table.  I kept trying to mouth the words, "Are you okay?" to Shelbie but she couldn't figure out what I was saying and I didn't want to be rude to the people I was suppose to be listening to.  I also didn't want to be THAT mom who freaks out at everything so I tried to play it cool but inside was a different story.  Ugh.

I really had no idea what was happening physiologically to her when she complains of not being able to breathe.  Now I know.  Is it really all that great to know?  Is ignorance bliss?

YES...it is.

All of that left me feeling not so great!  A little shaky.  But then again...stupid lupus!  All day, I felt like I was being chemically burned from the inside out.  My face has been on fire all day!

Tonight, the kids were busy with stuff so I went to see my Nephew sing in a voice competition.  He was up against some tough competitors and nailed it!  The songs everyone sang were so powerful.  I had an emotional reaction to several of them...like the one he sang, Sunday Morning by Maroon 5 and another one Desperado by the Eagles.

                                   "It may be rainin', but there's a rainbow above you 
You better let somebody love you, before it's too late"

It was a powerful day...no shortage of emotion.  


All at once

Sometimes, life happens all at once.

So fast and so full...it's overwhelming.

Sometimes, it happens in the smallest of things...Like...

Seeing an amazing photo that Shelbie has taken.
Looking at Sam and seeing this amazingly handsome, well rounded young man.
Reading a letter for Spencer and feeling overcome with the spirit because his testimony leaves me speechless.

And then to think...these are my people!  I don't know how I became so blessed to have children like this.  They are loving and kind and special and it overwhelms me at times.  They didn't get to be involved in team sports, or piano lessons or gymnastics or dancing or honor classes and they aren't Eagle scouts or anything great in terms of the world.  They didn't learn the alphabet at age 1.  They weren't solving math equations while painting Picasso replicas before age 3. They never had a GPA of 4 or anything close really...

Nope...but they are so much more! Their talent and skill runs so much deeper than any of that.

I see members of my family struggling with illness- my dad, my sister and that feels sad.
I see people I love giving up on God and giving in to the world and that breaks my heart.
I see the sadness and loneliness in a total stranger and I can't stand it.
I see the first visits of Hospice to my friend's husband and wonder...not another one being taken.

It all comes at once and sometimes it just feels like too much to balance, to handle, to hold in my heart.   I guess better at once than not at all...


Tuesday, June 16, 2015


Today, I had an epiphany.  Thanks to a friend who helped me talk things out...

I've been thinking about the idea of Shelbie needing oxygen outside of therapy.  I've been thinking about how I have to keep hounding Sam to take his breathing treatments and...thinking about a story the respiratory therapist told me yesterday.

The therapist was telling us what was meant to be a funny story.  An elderly couple was in and the wife was doing rehab.  They put oxygen on her and then left to attend to another patient.  When the therapist went back to the lady, the oxygen was off.  This scenario happened over and over. She kept putting the oxygen on, when she turned around, the oxygen was off.

The therapist finally asked why she kept taking the oxygen off and found out it was her husband taking it off.  When she asked why, the husband said, "I just don't want her to get addicted to it."

It's a funny thought really...we breathe oxygen every day, how could anyone get addicted?

I asked Sam if his breathing treatments help him.  He said "Yes."
"Then, why do you not do it all the time?" I asked.
"I don't want to get addicted to it.  I don't want my lungs to get use to it."  he explained.

I sort of get it, but it's kind of hard to process.  Finally today, after talking this through with my friend, he said, "It's not about getting addicted, it's about not wanting to be engaged with this disease."

Ohhhhh....Ya.....that makes sense!  I know that once Shelbie has to start oxygen all the time, she will never get off oxygen and that is a very sad and disturbing thought.  Sam feels that doing the breathing treatments every day means he will never have a life without them.  And...I'm sure it was the same feeling for the elderly man who didn't want his wife addicted to oxygen.

Once you go there...you are committed...engaged in the disease process.

We are very much disengaged in the disease process.

None of us want to go 'there'.

I don't schedule the kids blood draws like I should.  We miss important appointments...like, we still haven't followed up with the cardiologist to get Shelbie's cardiac MRI report!!  I was all bent on getting it but do I really want to know what it said?  Nope...not really.

Sam doesn't want to commit to breathing treatments because it's acknowledging the disease and that he is sick.

I guess for now, it's the way it is.  I don't know if there is a right way or a wrong way of doing things.  We've never faced these things before.  I don't know how we are suppose to be.  Suppose to do it.

Life is hard sometimes and the lessons...inspiring but not always empowering.


Monday, June 15, 2015

The weekend review

This past weekend was the first weekend in 2015 that I had very little work to do.  It left for a lot of time to get caught up on medical stuff, yard stuff, other stuff and make some plans for today.

Here's a recap:

  • Spoke to one of my docs on Saturday and I do indeed have Lupus.  I started back up on the anti malarial drugs only they doubled my original dose.  This stuff is so toxic, I have to have my eyes checked every three months.   Remind me again why I want to do this to myself...sure, put lupus in remission and go blind in the process.  
  • I decided to finally email our local Oncologist and Dr. Shimamura in Seattle.  I heard back from both of them today.  Dr. S is really sad to be leaving us and said she was going to call me personally because we have found our way to her heart.  She said we can always email her.  She suggested transitioning all three kids to her adult Hematologist friend in Seattle and the Cancer Alliance Center.  I have met the new doctor and I know they will keep in close contact with each other should something come up but I just don't know...Dr. S said if we get it scheduled the first week in August, she will meet us at Dr. Keel's office and make sure the transition goes well.
  • I gave our local Oncologist an out but he said he would be willing to stay with us.  For now, we will plan on doing biopsies with him in August...I think. 
Well, those are the three big things.  I still feel very confused and lost as to what to do for the kids.  

I think something strange happens to me when I'm not working a hundred hours a week...I have too much time to think and worry.  Today has been such a low energy day! 

At Pulmonary Rehab, the therapist and I were talking while Shelbie was doing her exercises.  I mentioned that Shelbie had a really bad weekend.  Always winded, even just walking the shortest distances and not even walking fast.   The therapist said that in a couple more weeks, we should see some improvement but that we might need to consider using oxygen at home.  

Ugh...I can't even go there yet!   What she says makes total sense but still...

They continually monitor Shelbie while she is exercising.  Each exercise and reps is designed just for her based on what her heart rate, blood pressure and respiration rates are doing.  It's pretty amazing how they do all the monitoring.  A couple of therapists sit at computers and just keep track of everyone's heart rate, etc.  The therapist told me that even though Shelbie's oxygen sats are 'okay' at 92-95, whenever she exerts any energy, her heart rate goes sky high!   That is a sign that she is not moving oxygen correctly between her lungs and heart.  For now, her heart is compensating for the lung issues but eventually, it's going to wear her heart out.  She's too young for a worn out heart.  When she wears the oxygen, her heart doesn't have to work so hard.  

See...it makes total sense but there is just something about 'going' there...I just can't do. 

Sam came with us today and she was asking why Sam isn't here and I said that for now the steroids seem to be helping him.  But...again, he is having the same issues as Shelbie. 

Every time we go, everyone is so kind.  The men there are completely smitten by Shelbie.  They LOVE her and she loves the attention.  The women love her too.  After she was done, a couple of ladies invited her to sit down and have a drink of V8 juice with them.  They asked about her photography and she shared some of her latest pictures.  They just doted over her.  

When a couple of the men came in, they said, "Now, where is that beautiful little girl of yours?"  They would scan the room and wave to her wherever she was.  

With Sam there, the women couldn't stop talking about how handsome he was.  One lady said, "Well, you may have screwed up their lung and heart genes but boy you did okay in the looks department!"  

I love these people!  They make me smile and they make all the crap outside of those walls just disappear for an hour or so.  

Shelbie completely wilted after rehab today.  I don't know what is happening to her.  She seems to be going downhill.  Tired ALL the time...just not feeling well.  Something is going on, I'm just not sure what. 


Sunday, June 14, 2015

Let's talk about...


It's hard being a woman.  Seriously.  We have to do some of the darnedest things like, oh, I don't know...give birth for one thing.  That's not entirely fun and enjoyable I mean, unless you love doubling your body weight in 9 short months, squeezing a watermelon out a hole the size of a lemon, get the life sucked out of you and other unmentionables.

We do it all like champs, veterans...like it's just another line item on the to do list.  We rarely complain, we just git 'er done.

It makes me wonder about Bruce Jenner.  Why in the world would any man want to become a woman?  What kind of guy signs up for that?  Well, keep in mind, he waited until well after menopause to become a woman...wimp!  See, even a real man can't do what a woman naturally does.

But then there are mammograms.

Medicine has come so far but when it comes to mammograms, not far enough.  Is this really the best we can do?  I don't think there is another cancer screening test as primitive as a mammogram. It looks all high tech but don't be fooled...it's primitive.

To test for colon cancer, they don't squeeze the crap out of it until cancer cells show up on a computer screen. Nope, you take a nice little nap, they look around and you don't feel a thing.  Brain cancer, they don't place your head in a vice and flatten it out until it's about 1/8" thick so why do they do this for breast cancer screening?  Why?

Here are some survival tips for getting a mammogram...

  • Take Ibuprofen before you go.  Takes lots of it!  Your back is going to hurt by the time you're done with this nonsense.
  • Don't be misled by the lovely pink smock they give you to wear.  This is nothing like a morning at the spa...and it really serves no purpose other than to get from the changing room to the testing room. 
  • When they start the vice up, don't look down. It will terrify you. Stare straight ahead. 
  • When she tells you to hold on...she means it. 
  • Don't become friends with the tech.  Any conversation will just distract them from getting over to push the button. See the note below...
  • Make sure you get a tech who is fit and fast.  You want them to be nimble and bound back and forth between the machine and behind the radiation screen.
  • When they tell you not to breathe, don't worry, you won't be anyways.  It's just something they have to say.  In fact, if they don't get the shots they need first time, they will need to supply you with oxygen.
  • Don't be alarmed when the tech has to sit on the floor in order to get things lined up.  This is pretty much the point when you stop feeling human and more like an experiment.
  • Don't cry.  Big girls don't cry.
Note:  My tech ended up being good friends with my friend who died the week before, Mike.  We saw each other at his viewing.  This is no joke...once I was sufficiently flattened and caught in the machine, she decided to start talking about Mike and his wife Cindy.  She stood there detailing out her thoughts and I have no idea what she was saying...I think I was starting to black out.  I just wanted to will her to shut up and get on with it.  At one point, I'm pretty sure she didn't realize how far she was hand cranking things because she was rambling on.  It wasn't until I let out a squeal that she said, "Oh sorry! Too far?"  

I just really think that they need to come up with more advanced methods of doing a mammogram.  Oh well...I'm good now for another year!  I'm going to enjoy the break!


Friday, June 12, 2015

Philosophy on life

Today, I was reminded about my philosophy on life.

1.  Do what you can.
2.  Live without regret

Do what you can...There are so many things in life that I am discovering I cannot control.  I hate that!  So, it becomes very important for me to look for the things that I do have some influence, choice, control...call it what you may.

 I can't control the hardships of people around me but there is always something I can do to show love and support to them.  I can't change the disease my kids have, but I can take measures to keep them as healthy as possible.

There's always something to do...so do what you can.

Live without regret...The worst phrase I have ever heard is...YOU SHOULD HAVE... or I WISH I HAD OF...regret sucks.  I do everything in my power to live without regret.  I find that as long as I am following the philosophy from above, then I don't have to face regret.

I have had experiences in my life that I am not happy about, proud of or really want to be reminded of but...I don't regret them.   I can honestly look back at those times and know that I did what I could to make the most out of it.

People often ask me if I regret getting divorced.  Obviously, staying married would have been my preference if the marriage was one of contentment, peace, understanding...blah, blah, blah...but it wasn't,   I did the best I could at the time.  We took our marriage apart as gently as possible and we came together in the interest of the kids.  I changed, He changed.  We are better for it.  So...no regrets.

Today, I had my lovely mammogram and ultrasound.  I have fibrocystic breast disease and have had for 10 years.  In the past 5 years, I have had to have 3 lumpectomies.  The lumps never showed up on the mammogram but on the ultrasound.  With each surgery, I asked my trusty surgeon if I had just been overly cautious by having them removed.  With each one, he said, "Absolutely NO!"  In fact, he stated that we would have fewer cases of breast cancer if women and their doctors were more aggressive. Two of those were showing early signs of becoming cancerous because of the way the cells were changing.

So...I'm not interested in playing around with the wait and see approach.  Remember...No regrets!

Well, after the mammogram, they have the radiologist check the films before proceeding with the ultrasound.  Today, the tech came back and said the radiologist wasn't going to let me do the ultrasound because the mammogram was stable from last year...I have several calcifications showing up which almost always progress to cancer but they are stable.

I told her I didn't agree with his decision and since he knows nothing about my history, my situation now, I wanted the ultrasound and my doctor agrees because she wrote the orders for one.  She went back and still he said, "No".  That's a bunch of crap!  As if I'm going to let some cavalier doctor who thinks they have a license to play God, dictate how I choose to take care of my body.

I told the tech I would just reschedule the ultrasound.  She said, "Well, that's going to be hard to get it through your insurance now since he already dictated it wasn't necessary."
"It's been less than 5 minutes and he's already completed the dictation and that's that?"

I marched over to my doctor's office and explained what was happening and they were not happy!

Now...I have to fight.

At first, I thought I should just keep quiet but I kept coming back to my philosophy on life.  I'm not going to back down on this one.  I would much rather be proactive when it comes to health than listen to any doctor.  The extent of their knowledge lies in the pages of a text book written by someone else who still only had limited knowledge.  I know my body.  I know what needs to happen.  I know I'm not going to be the woman who hears the words..."If only we had caught this sooner..."

Not today!!


Thursday, June 11, 2015

Another Strange Day

It's been a terribly long time since I had such strange and funny days!  Today was another one.

I had a furniture rep call me to see if he could stop by and bring some promotional stuff over.

He knocked on the door and when I opened it, there was a dog by his side.  I invited him in and the dog walked politely beside him.

I had my dog Bentley, locked in my room so he wouldn't jump up on the guy but Bentley was not happy that there was company and he was not out there sniffing up his welcome.

This other dog was running through the house, eating my dog's food, getting dog toys out of the basket, jumping all over and laying in the dog bed.  He was just making himself all at home.  The furniture rep just kept rambling on and I'm thinking..."This guy has a lot of nerve bringing his stupid dog to my house and letting him get into everything!"

Meanwhile, Bentley is going crazy trying to get out of my room.  I politely interrupted the rep and said, "Do you mind if I just get the dog out the room so he will stop barking?  Maybe these two can just play?"

"Ya sure.  I don't mind."  He said.

I brought my dog out and he jumped out of my arms and started chasing the other dog.  It was crazy!!  They guy was yelling over the barking and commotion..."What kind of dog is that?"

"A Shih tzu. What kind do you have?"

"A Yorkie."  He said.  I was so confused because this was clearly not a Yorkie in my house.

"Are you sure he's a Yorkie?  He doesn't look anything like a Yorkie." I said,

"Ya, for sure he's a Yorkie." He replied.

Just then, my dog lit in to the other dog and was trying to bite him so I swooped him up and started apologizing profusely!

The rep goes, "You don't owe me an apology."
"Yes, I don't know why he's acting like this!"
"That's not my dog!!  I thought it was your dog!  That's not your dog?"
"WHAT??  That's not YOUR dog?"  I asked
"No.  Why would I bring my dog with me."

Oh my gosh...I have never laughed so hard.  I had tears streaming down my face.  I have no clue where this other dog came from but I quickly let him out the door!

Later this afternoon, I had to go clean a house for my elderly friends.  I've mentioned them before...I took them donuts last week.  Today, the wife was sleeping when I got there and he was just sitting in his chair.  Two little girls came wandering into the house and I had never seen them before so I asked them who they were.

"We just came to play with the dogs." One little girl responded.
"Oh, Okay.  Let me tell Reed you're here."  I turned to leave and the two little girls started whispering to each other.  When I came back, one girl said,  "Are you a servant?"

Sometimes, I just can't resist messing with people so I said, "Yes."
"So you clean and serve them?"
"Yes, I do."
"Wow!!  Well, we really need some water can you get that for us?"
I got them both a tall glass of ice water.  Reed puttered out with his walker to see what they were doing.  He didn't seem too excited to have these girls here and he was going to tell them to go home.  Just then, one of the girls said, "Oh, I see you left your man cave!"

Keep in mind, these girls are probably 7 years old, if that.  They had a lot of sass for 7 year olds but at that, Reed about fell over laughing!  I helped him back to his room and went back to pack up my cleaning stuff.  The girls said, "My parents can't afford a servant.  We would like a cookie please.  She wants chocolate chip and I will have an iced graham cracker."


I'm looking at these two in my best servant look.  "Okay.  I'm not sure we have iced graham crackers left."  Lucky for me...I happened to know they did have these cookies!  Ha ha...so I took great care in laying out their snacks on a plate, filling their water glasses and rounding up some coloring books and crayons to keep them from bugging the sleeping adults. At first it was funny.  They must of thought they had been transported to Daddy Warbuck's house but they quickly became annoying and entitled.

Funny day...all sorts of craziness.


Old People Are Funny

Shelbie started pulmonary rehab today.  Neither one of us really knew what to expect.  It turned out to be quite an entertaining afternoon.
Not sure how I feel about seeing her with oxygen...

Shelbie is the youngest in there by at least 45 years.  It was packed with elderly people.  Some were on treadmills, some on bikes, some lifting weights...just a flurry of activity.

As we walked in, everyone said "Hi".  I mean everyone!  The nicest group of people I have ever met!  The therapist greeted us and whisked Shelbie away to get her set up with heart monitors, blood pressure monitors etc. then took her for a walk around the hospital.  I stayed in the room and sat at this large round table with two other elderly women.

Lady 1 said, "Is that your daughter?  She's so young!  She doesn't look a day over 15."
Me: "Yes, that is my daughter.  She's 22!"
Lady 1: "That's too young to be here.  What's wrong with her?"
Me: "She has a genetic disease that is creating holes in her lungs and heart."
Lady 1:"NO!!!  Can they plug them up?"  She turns to Lady 2: "Did you hear that?  The girl has holes in her lungs and heart!"
Lady 2: "She has a cold in her lungs and heart?"
Lady 1: "NO...HOLES!"
Lady 2: "That's the worst thing I've heard!  Is she your only child?"
Me: "No, I have three kids with the same disease."

Just then, the husband of lady 1 sits down and he mumbled something to lady 2.
Lady 2 replied, "Listen!! If your Bull@#$& was music, you'd be a brass band!  Now sit down and listen to this!"  She went on to talk about Shelbie.
Husband: "Geez!!  Sounds like you got nothing but bad luck!"

Then a third lady sat down and she started complaining about the air conditioner in her car going out and that she had a hole in her septum.   Lady 2 said, "Just stop complaining.  You have no right to complain.  We are in perfect health compared to that girl.  Look at that little girl over there!  Holes in her lungs!"

The third lady let out a gasp!  "Well, I have a hole in my septum!  Can't imagine what it's like having a hole in your lungs!"
Then the man said, "Good Hell!  I'm getting healthier and healthier the longer I sit here!"

I could not stop laughing.  Then he said to his wife who was lady 1, "I say we just go home and make love!"  Well, that started a little argument about who he thought he would be making love to since she would have no part of that!

That started a whole line of conversation about love and dating!   Lady 3 apparently went on a date the night before to Perkins and her date took their chocolate cake home and she didn't get any so fat chance that he is going to get a second date.   The husband just kept bringing up afternoon love making and I'm sitting there going..."What the heck, these 80 year olds are getting way more action than I've seen in a decade!

We spent about 15 minutes discussing the menu at Perkins.  Apparently, that's where they all meet up after rehab for chocolate peanut butter pie or the chocolate muffins. They were astounded that I have never eaten at Perkins and debriefed me on what to order when we go...after rehab.

Those people jumped from one amusing conversation to the next.  They even got into religion.  Two of them were Catholics and two were ex-Mormons.   They were talking about how their friend Karen missed today because she was being cornered by the Mormon ladies..."Boy those Mormons sure like to visit and help.  They call themselves Relief sisters or something like that. Nice people but I'm not joining."

It was just so comical.  They were all so smitten with Shelbie.  Most of the men came up to talk to her.  One lady told her she hopes she gets better quickly so she can get married and make love.

Seriously...is making love all old people think about?  Making love and eating chocolate cake.  I guess pulmonary rehab is working for them.


Tuesday, June 9, 2015

The Journey

It's been an eventful weekend.

Saturday, I made an impromptu trip to Salt Lake to take Sam and a couple of friends to an amusement park for which they had free tickets.  I had a lot of time...a lot of time, to think.  In fact, I ended up sitting at a Barnes and Noble for 5 hours!  I spent most of that time working but had all sorts of thoughts going through my head.

Today, I attended the funeral of Santa, aka- Mike.  I had the same thoughts I had on Saturday.


 Today at the funeral, I got lost in watching people at the cemetery. Mike was a huge part of the scouting program and the Mountain Men Rendezvous organization.  His fellow Mountain Men were there in costume.  They did a special salute to him.  Once the program at the cemetery was over, the Mountain Men each walked up to the casket and laid something on top.  The items were things from the mountains; a sprig of pine, a pine cone, a hand made leather satchel.  Each man had tears in their eyes.  Several bent over and kissed the casket.

I couldn't help but consider how much Mike's influence had reached.  I wondered what each of his friends were going through.

As people were departing, I watched each of Mike's daughters stand quietly alone at the side of the casket just weeping and sharing one last moment with their dad.  There was so much going on with the people visiting, the Mountain Men congregating...I looked over and saw Mike's wife just sitting alone under the tent.  She looked tired and lost and completely exhausted.

You don't have to look far to find struggle.  Everyone has something hard they are going through. We seem to be experts in suffering silently and privately.  We end up being a bunch of satellites that merely circle each other, rarely making contact.

Seeing all the heartache today was almost worse than the day I found out Mike had died.  It was just such a lonely sight.  The worst thing about a long, hard journey is a long hard journey you make alone.  I wish there could have been something I could have done to make it all better.

The struggles we face may look different but underneath it all, we are very much the same.  On the same journey.


Thursday, June 4, 2015

Lessons from suffering

Sam made it home from his little trip...sick.

Ahhh...a fever.  I guess I wasn't too surprised.  He was sunburned, tired and coughing.  He looked miserable.  Other than that, he did okay.  He said the hiking was fine but he did get winded several times and had to take a break.  All in all...he did great.

Today, the news of Mike is still sinking in.  I don't think it will seem real until his funeral.

Today, I cleaned a house for an older couple.  Such a sweet couple.  They are always so thoughtful and kind.  The husband has been quite sick.  Today, his wife told me he is being moved to Hospice.  So sad.  I wish it wasn't so.  Tomorrow, I am going to take them donuts for National Donut Day.  It's a small thing to do, a meaningless thing really but the smile on his face was priceless when I told him it was National Donut Day on Friday.  The relief in her eyes that I will be back to spend time with them was almost more than my heart could handle.  I recognized those tired eyes.

Sunday, I had a moment to visit with my friend who recently had open heart surgery to replace a valve.  He commented on how bad he feels for bringing 'this' onto his family.  I knew exactly what he was feeling.  I know all too well the feelings of shame and guilt and even embarrassment that you have to admit to more setbacks, more trials.  As he spoke those words, it dawned on me...how is it that HE brought this upon his family.  His heart problems weren't a result of poor choices it was a result of God's trial for him; for them.   I gave him my one minute reprimand about that thought and figured, I could use a little reprimand myself.

Often, it is hard for me to admit to another doctor's appointment.
Another disease.
Another disorder.
Another fever.
Another infection.
Another test.

 I view it myself as something I must have done.  I have grand thoughts that others must look at me and think..."look at all the problems she is bringing upon her family.  If she would just stop."

Maybe others don't judge me as harshly as my inner critic does but, it's still a battle that goes on in my head daily, many times a day in some cases. It's the very thing that urges me to isolate and use words like, 'fine'.  'Great'.  'Hanging in there.'  'This too shall pass.' 'Oh, we are use to it.'  'It's no big deal.'  On and on goes the lies in my head and spill out so easily, even without thinking anymore.

The truth is, the truth scares me.  It's too real.  Too harsh.  Too unbelievable. I don't want to own that kind of story let alone have a life like that.  So, I pad the truth, coat it in sugar, roll it around in my mind to knock off a few sharp edges and then let it fall ever so gently from my mind until it almost drifts far enough way, I hardly recognize it as my own.

There is so much to be learned from suffering. Not just my own, but others. There is power in the very thing, for good or for bad.  It can energize you, or quiet the roar that facilitates a forward motion. Either way, there is no way around it, only slogging through.


Is the North Pole in Heaven?

It is now!

Today was the saddest of days.  My favorite person in the world passed away unexpectedly from a massive heart attack.  Santa Claus.  AKA...Mike P.

 It feels like I lost my best friend.  A family member.  There will surely be a hole that I will now have to fill with the sweetest memories of Mike and what he did for my family.

2014- Meeting Winston the Hedgehog for the first time

2014- He always had a hug for me

I love how much the kids loved him!

2007- He surprised Shelbie as she came out of voice lessons with her Wish from Make a Wish! 
September 2007  Shelbie had already been through 4 months of chemotherapy. 

I hired Mike one Christmas when I had seen him at the Elementary school doing a Santa gig.  He was amazing.  He was so endearing and enchanting with his stories of reindeer and the North Pole.  He captured the magical feeling of Christmas.  His beard was real, his hair was white like the snow.  I knew that I needed more of him, his spirit.  I walked right up to him and asked if he would consider coming to my house to meet with my kids.

He said, "Yes".
I think I was more excited than they ever could have been at just 2 years old. Ever since that first Christmas, he has been coming.

Every Christmas, we would buy Christmas for another family.  That was also part of the tradition for him to come.  I wanted to instill in my kids the importance of giving and we learn that not only from Christ but from Santa.  After he was done visiting us, we would fill his bag with wrapped presents and hand him a piece of paper with an address on it.  He didn't know the family and sometimes, we didn't really know them either.  He would often just go barging through their front door, jingle bells ringing and a hearty "Ho, Ho, Ho" or sometimes, he would sneak ever so quietly through their front door and surprise them!  Well, terrify them sometimes.  ha ha.

He would always call me later and thank me for sending him to such amazing families that needed a little extra cheering up, mostly because they too had to deal with hard health problems.

Mike and I became such good friends.  He would call me several times in the year for updates on the kids.  As the kids got older, they would recognize him at the store.  I was so anxious one time that Spencer knew right off the guy in front of us was Santa.  I didn't want them to stop believing.   Mike knew how important this tradition was to me.

He leaned down and into Spencer's ear whispered..."You know who I am don't you?"
Spencer's eyes were huge!!  He nodded a firm "Yes."
Mike replied, "I told you I would be coming down here to check on you, to see if you are being naughty...or nice!  You are doing great this year!  Keep it up!  Don't tell anyone you saw me, I have to come in disguise while I take notes on how people are treating each other!"   Then he winked!

Spencer never doubted the reality of Santa for years!  I think he was 14 when he finally figured it out. Even the past few years, his visit was always a surprise and still as magical and wonderful as the first year.

The year Shelbie had to do chemo for a second time was rough.  I wasn't handling that very well.  It had only been three years since doing it for 9 months!  It's was harder the second time around.  He called me several times during the first few weeks to check up on us.  One afternoon, he got dressed up in his Santa suit and came up to the hospital to visit Shelbie.  She was so surprised!  It was the sweetest moment to see him sitting on the edge of her bed, holding her hand and making her smile.

When she was granted a Wish, he came with the Make a Wish team to surprise her with the wish.  Again, there was nothing sweeter than the gentle, loving way he had with my kids.

Most recently, Mike called me to get my opinion on something.  He had been offered a job with Mall Santas of America.  He had apparently caught some National recognition and he was thinking about taking the job.   They would send him anywhere in the United States to be a mall Santa for two months.

I was devastated when he told me he was considering that.  It would mean that this coming year, he wouldn't be able to come and see us.   I didn't want to tell him how sad I felt because I knew he was really excited about it.   He was retiring from his real job in December and this would have been a great opportunity.  He was worried too about the fact that he wouldn't be able to see us.   I told him that whatever he decided I would be fine with, he would just have to come and be Santa for Halloween but I was not going to miss a year of this tradition.

I have so many great stories about Santa.  He was just a genuine, loving guy.  He had a heart attack the night before his daughter's wedding.  They were at the rehearsal dinner.  He had bypass surgery that night and then next day, he showed up for the temple wedding and even made it for the daddy, daughter dance that night!

He came to Spencer's missionary farewell.  He always took an interest in what the kids were doing and how they were handling their life.

One such Christmas, we were struggling with so many setbacks.  He asked if he could pray with us.  He offered the most beautiful prayer, kneeling in our living room, Santa suit and all.  We cried together, we laughed together.  He has been a huge part of our family.

This past Christmas, he consoled Sam who was facing the reality of heart problems.  He told him all the reasons why he shouldn't be scared.  Christmas Eve, he was in a terrible car accident and totaled his truck on the icy highway.   He was upset more about the fact that that red truck was his 'SANTA' truck.  He spent so much time trying to find an exact replacement.  AND...he did!!!  He even showed me!

I was so glad he was okay from the accident.  I punched him in the arm and told him to take care of himself because he was such a good friend, I didn't want to lose him.

Last week was the last time I saw him!  I still can't believe it.  It feels like someone is just punched me in the gut.  I will miss him so much!!


Tuesday, June 2, 2015

Cardio Pulmonary Rehabilitation

Today, Shelbie had her first Cardio Pulmonary Rehab session.  I had my doubts about doing this but it didn't take long for me to see the value in this.

I'm never thrilled about the hospital in the big city.  I hate it.  But every now and again, we have a nurse that really makes a difference.  Today, the respiratory therapist we worked with was amazing.  She had spent a fair amount of time researching Dyskeratosis Congenita before we arrived and she was pretty well up to speed.   She spent an hour and a half counseling us about what the care plan would be over the next three months.

I have always thought that I should limit the kids' activities so they don't 'wear' out their lungs.  You know, the more you stress them, the quicker the disease will progress.  I told her about my concern.  She set me straight on a few things which I was so appreciative of.   I love being taught new things.

She explained that a big part of your lung function has to do with how strong your diaphragm muscle is.  It's one of the largest muscles in your body and it is mainly responsible for keep your lung function in tip top shape.   It is the thing that makes your lungs expand.

They discovered this during the Polio days.  Polio is a virus that attacks the muscles.  It would attack the diaphragm and people would lose their ability to breathe and have to spend time in an iron lung.   Cool right?

So, she said that the stronger they can get Shelbie's diaphragm, the better off her lungs will be, even as the disease progresses.  The diaphragm can compensate for poorly functioning lungs.   She went on to explain that the heart and lungs are so closely tied together.  Rarely do you see heart problems without it affecting the lungs and vice versa.  They rely on each other working properly.

They are going to start Shelbie on oxygen.  At first I felt panicked that we had arrived at that point.  It feels like a setback knowing my daughter needs oxygen.  She reassured me that it will help her and she doesn't have to be on it all the time, just during exertion.  Because Shelbie is in bone marrow failure and struggles with low hemoglobin and hematocrit, she isn't moving oxygen efficiently through her organs, including her lungs.   This is adding to the other lung issues and putting undo stress on her heart.  Because she has heart arrhythmia, adding oxygen should stabilize her heart rate and keep her safe while they run her through these rehabilitative exercises.

So, in the long run, it's going to be a good thing I guess.  Well, it will be.

After leaving, I felt a lot of peace and I believe we are doing the right thing for Shelbie.   I try not to think too far into the future about where this disease is going to take us.  It's scary but this is one thing that may prolong what feels inevitable.

Monday, June 1, 2015

The Winds of Change

I told you so...the winds of change are coming.  They arrived today. Out of the blue.

I got a call this morning that our favorite doctor of all time, in all the world is leaving.  Dr. Shimamura from Seattle Children's is packing up her practice and relocating to Harvard in Boston.

What does this mean for us?  It's complicated and difficult at best.

Our whole team is being dismantled.  As of July we have no one but our local docs who know nothing.  I like them but they don't make the effort to learn about the disease my children have.  Dr. Shimamura was and expert in both Shwachmand Diamond and Dyskeratosis Congenita.  We were clearly led to her.  Now, I don't know what we are going to do. I was hoping for bone marrow biopsies to be done in Seattle in August but she is leaving in July.  There's not enough time to get it all set up.  We were waiting for Spencer to get home so we could do it all together.

There are only 4 DC specialists that I know of in North America.  One is in Toronto, now 2 in Boston and one in Maryland at the National Institute of Health.  None of these clinics is in our insurance network.  AND...as if I have money to travel to any of these places when we need care.

Ironically, I got a call shortly after that from National Institute of Health. I have been working with them since 2004.  Since they found out last May about the kids DC mutation, they have been pursuing me for information.  I have been re-engaging with them.  The nurse was calling this morning to check in on us and see if there were any new developments.

I reported that the kids were recently diagnosed with Pulmonary AVM.  She was taken aback.  NIH is about to release a paper stating that AVM's are in fact a part of DC.   With my kids, they now have three handfuls of kids with DC and AVM's.   Interesting.

The weird part is, they want to start testing me for DC.  I have no desire to know if I have more than just carrier symptoms. I told them 'NO!'.  I think she was surprised but I'm not strong like my kids.  I have enough going on, I don't want that diagnosis looming over my head.  I don't know, I think we have enough going on without throwing my issues into the mix.

I explained our dilemma to NIH and they are going to try to find us resources in Salt Lake or Boise.  Until then, we are just going to stay the course and leave it in God's hands.

The rough part is, I was counting on future transplants to happen in Seattle.  We'd be closer to family for support and they have a special regimen they are testing on DC patients.  I think we have to go to transplant where the best docs are and that is feeling more like Boston.

I don't know what God is doing with us. I didn't expect this but I'm willing to be patient and wait for an answer to come.  It just caught me so off guard. In some ways, it's as intriguing as it is discouraging.  We'll have to wait and see what transpires next.