Tuesday, November 29, 2016

Life Hack

I've always wanted to come up with some awesome life hack of my own.  And...today is not the day!

Ha ha...but I do want to share the most phenomenal discovery that has changed my life.  Believe me, it has to be an incredible hack in order to excite me.

If you are over 50 years old or suffer with a disease like Lupus or Fibromyalgia, then you will be able to relate.  Watery eyes!  I have been suffering with this to an increasing degree for over a year.  If I yawn, the tears run down my face.  If the wind is blowing, my eyes water.  If it's cold, my eyes water. As soon as I put my make-up on, my eyes start watering.  It's annoying.  My tears seem so salty, the skin under my eyes is constantly burning and dry.  By 8 am, my makeup on at least one eye is completely off.

This past weekend, it was so bothersome, I went and bought lacquer eyeliner.

Out of the blue, something showed up on my Pinterest feed about watery eyes.  Their remedy was a dab of Vaseline in each corner of your eye- as close as you can get without getting it inside your eye.  I was pretty skeptical especially since it said "the tears find a different path to take."  I don't think tears just divert themselves because of a little Vaseline but I'm desperate to try anything.

Low and behold- it works!  I forgot what I was missing all this time having eyes that didn't leak!  I feel like I was just given a new lease on life. Seriously though, it was non-stop. All this time, I thought I had a blocked tear duct and maybe I do but as long as this is working, I'm not going to worry about it.

I do have one question though, why do I have to deal with things that shouldn't happen for another 20 years?  I'm an old soul!!

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Monday, November 28, 2016

Around we go...

Updates from the trenches include the good, the bad and the ugly...

Sam has turned the corner on the pneumonia!  Hooray!  He is up and around and it seems that for now, things are improving with the antibiotics.  He threw me a curve ball this afternoon when I got home from meetings and a doctor appointment with Spencer...He's moving out!

Gah!!  I thought I had successfully convinced him that saving $1200 would be the way to go.  I reminded him of all the wonderful things he could buy for $1200 instead of paying rent.  I told him how much we would miss him.  I made him think life would stop without him here!  Just kidding...I didn't do any of that.  Well, I do think it's a waste of money to spend on apartment living when you have a home 2 miles from the college you attend.

Alas, he's Mr. Independent and the pull from his friends is greater than his dear old mom.  I realize he will only be living 4 miles away but still! My kids are my friends and I love their company so much.  Not seeing him everyday or having family dinners together every night or family home evening will be so sad.  I'm not sure how to transition when he will be so close.

With Spencer gone it was hard but he was in another State so I really knew there was no way those traditions could happen.  Oh well, I will survive this I'm sure.

Spencer!  Poor Spencer.  We saw our Ophthalmologist this afternoon.  If you are local, I'm giving a shout out to Dr. Josh Fullmer.  He rocks as a doctor.  He is so kind and thoughtful.  He called me early this morning, even before the clinic opened to see how Spencer was doing.  Not many doctors are that mindful.  He fit Spence into the schedule and Spencer has an autoimmune disease called Scleritis.  His immune system has attacked his eyeball.  It creates extreme pain, vision loss, swelling and inflammation.  The treatment is steroid eye drops which we have been doing since Saturday but that isn't making a difference so far.  Dr. Fullmer wants to give it a few more days to see if it will work.  If not, he will switch to oral steroids.  It can be hard to treat and can last for weeks.

I tell you, that boy is being tried right now.  I feel so sorry for him.  It's tough. He's busy with work and when you can't see much out of one eye, it makes being a videographer a little difficult.

This morning, I had to go to a lab in the City to get my blood drawn.  NIH is testing me for Dyskeratosis Congenita.  To say this makes me anxious is an understatement.  At this point, I have opted out from having them send me the results.  It makes my kids so angry that I am refusing to find out.  I don't care.  I know my head, I have more than enough to deal with emotionally, I don't need that looming like a dark cloud.

I have decided not to call the doctor about Shelbie's incident on Wednesday night.  We have her transfusion again this week so I'm waiting to see if anything comes of it before I get worked up.

We are off on another busy and insane week.  I am trying to get some projects wrapped up and applying for a job that I really, really want.  I am hoping to hear soon.  It would make for a very happy Christmas for me if it worked out.  Still, I worry if I can do it, especially if the new year continues like this entire year has been.  I'm leaving it up to God and see what he has in store.



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Sunday, November 27, 2016

It's raining, it's pouring...

We are 3 for 3!

Today was Spencer's turn for the urgent care.  Never underestimate the power of God to keep you humble and on your toes.

His problems actually started on Wednesday.  He was complaining that his left eye wasn't focusing and his brain was hurting deep inside on the left.  I did what I always do..."Do you want some Advil?  If you're nauseous I have some Zofran too.  Maybe just take a nap, your eyes are probably strained from all the computer work."

I offer the worst  kind of sympathy but I don't know what to say anymore, and half the time, the symptoms are so random I have no clue what to do.  I do know that it isn't reasonable to be running to the doctor every time something comes up.

It went away after a few hours and then I didn't hear another thing about it mostly because he's been at his dad's house for the holiday.  I guess this morning it flared up again but this time he couldn't focus on anything close.  In order to see, he had to have things at the length beyond his arms reach.  Still, I didn't hear about it until tonight and when I saw him, I was shocked.

His left eye is sort of drooping.  That looks like the only problem but when you lift up his lid there is no white space left, it's completely bloodshot.  Just bright red!   His eye isn't tracking well and his vision is getting worse and the pain is in the back of his eye, in his head, not where you would expect pain if he had pink eye. He's also really sensitive to light.

I took him straight in to the urgent care.  All three kids have the gene for Lebers Hereditary Optic Neuropathy.  LHON.  It raises it's ugly head in young adults.  It starts with blurred vision and then within two weeks, they go completely blind.  I was reading up on it and there is a mutation called LHON Plus...this causes a tremor and heart arrhythmia... A plus?  They couldn't think of a better name than LHON Plus?  You get to go blind...AND your heart stops too!

Anyways, of course the PA on duty had no clue what to do, but to his credit he said, "I have no clue what to do about this but before I start doing anything, I wonder if you would be okay with me stepping out so I can read up on Dyskeratosis Congenita and LHON's and then I would like to call your Ophthalmologist to let him know what is going on." I was super impressed!

They don't think that this is related to LHON's, thank goodness!  They think he has an autoimmune disease of the eye but until we can get in to see our doctor on Monday, they are starting him on steroids.

Science hasn't come very far in the world of Mitochondrial problems which LHON's is.  Some say it takes two genes for the disease to manifest itself and some say the disease can happen with only one gene.  My kids just have one gene.  Oddly enough, they have started doing gene therapy and are seeing great results if it's done before you go blind. I pray we never have to go down this road. I think we have enough to deal with and DC has it's own array of damaging eye issues.

Sometimes, I just don't understand how so many things can happen to us all the time and then I am reminded that DC is an aging disease.  The more a cell turns over, the more damage occurs and the more disease you experience.  It's crazy.  This is a crazy disease with crazy consequences, especially when you have three!

I hate to wonder what's next...

Today, I also received two letters from our insurance company.  One was dated the 16th and the other the 17th. The first letter said that they had approved Shelbie's hospital stay from October 28th to November 3. That's nice of them to let me know more than two weeks after the fact. I just received it today.  The second letter said after closer review, they won't be covering the hospital stay or any of the tests!  Is this even fair?  NOPE. I hate Obamacare!  What a load of nonsense!  I haven't even received a hospital bill yet so who knows how much that is going to be.  Now, I have to go the rounds again and fight for coverage!  This is becoming my latest part time job.   The amount of money I have had to pay out above and beyond our deductible and out of pocket maximum is staggering...all because they refuse coverage after the fact.  It's insanity at its best.

And speaking of insanity...I've about arrived to that proverbial place.  This is where I usually say I can't wait for this year to be over but silly me...this disease will march on into next year.  I'm so excited to start a new debt load of medical bills in just 4 weeks.




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Friday, November 25, 2016

Giving and Receiving

In the spirit of this week of giving thanks, this post is about giving and receiving but it's not what you are thinking.

Last Friday/Saturday, Sam started getting sick.  It sounded like your basic, run of the mill head cold you get in October and wrestle with til April.  On Sunday, I was summoned by my Wasband that he had gotten worse and maybe a trip to the hospital was in order.

I went over to his house where Sam was, to assess the situation.  He had no fever, a wicked cough and a sore throat but that was about it.  Without a fever, I figured it was just a man- cold.  I teased him a little, got him some cold medicine, zinc, vitamin C, apple cider vinegar, ibuprofen for his joint pain and later in the day, took him some homemade chicken soup for them.  (Note: my Wasband is completely capable of taking care of a cold but he had been out of town for a few days and hadn't had a chance to go grocery shopping which is why I offered the soup.)

Sam said, "I really feel like something is wrong."
"Nah...it just sucks you have a bad cold."

He had a temporary job this past Monday so I made him go.  He worked 14 hours! Woke up and went back the next day for another 10 hour shift.

Sam never complained about how bad he was feeling.  We just kept living life.

This morning I was summoned again that Sam was getting sicker.

He came home and I ran him to the urgent care but still, I was certain it was a bad cold even though he kept saying he thought he had pneumonia.

The poor kid has pneumonia!!  What the heck? It's not just any pneumonia.  That would be far too easy! The real name is Mycoplasma Pneumoniae.  It is a unique bacteria that is highly contagious.  Incubation is 1-4 weeks before symptoms start but you are contagious during that time!  It's a bacteria that outbreaks about every 3-4 years.  Most people will never know they have it and worse case, get a cold.  The majority of the time, people never get pneumonia from it, just the basic cold symptoms.

Sam on the other hand has a shotty immune system so he gets to deal with the finer, complications of this bacteria.  It is very dangerous for him because his marrow is so suppressed right now.  He has nothing in the way of white cells or neutrophils to fight this.  He has several venous malformations in his lungs that already compromise his breathing and most recently, has developed a nodule in his lung as well.  The bacteria is a rotten one to get because it has no cell walls which makes it resistant to antibiotics. It's one of the smallest bacteria that lives and reproduces on its own and one of the few that can live without oxygen. Small germs like viruses can only live and reproduce inside another cell. If it isn't controlled quickly, it spreads to other parts of the body like the ears, nervous system, GI tract and heart, affecting the lining of the area around the heart and brain which causes encephalitis.

Sheesh...of all things!  So far, the only other place they know it has spread to are his ears.  Poor kid has a pretty nasty ear infection and throat infection.

I feel terrible because of all the people he may have shared this with not knowing he was even sick!  In this case, it's embarrassing to be the giver but honestly, it stinks to be the receiver too!

When my kids were little, I would get so angry when friends would bring their kids over to play and they have a gross, green runny nose!  Or they would say, "She threw up last night but she's fine now." NO!! Why?  My kids get the 24 hour stomach flu and they puke for days and days! It got to the point when I would have a list of acceptable excuses why we couldn't have play dates or any interaction, really.

So, I'm embarrassed that we are 'those' people!  Ugh.  The Wasband has a house full of company too! I'm sure everyone will be fine because they are robust, healthy people. the doctor assured me that everyone won't even get a cold.  I worry about Spencer with lungs that barely function, white cells that do not function, not to mention his heart that beats to its own drum and of course Shelbie.  So, far, they have all been just fine.  Not even a sniffle.  By now, it's too late to confine him to a room and pull out my bleaching regime.

What a rotten deal and what's worse, is now Sam has entered the twilight zone where he doesn't get fevers that signal his body is fighting something.  That is what I have always relied on to know when to panic.  Without a fever, its nothing to me.  I don't even know how you take care of people who don't mount an immune response.  Deep sigh...

We are going to treat it with a Z-pak in hopes that this gets rid of it.  If he isn't getting better in the next 48 hours, he will find himself in a beautiful suite at the hospital...probably in Utah.  At that point, the next step would likely be IV steroids, antibiotics and plasma transfusions.

Well, at least we avoided the hospital on Thanksgiving.  That's some kind of something to rejoice in!





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Thursday, November 24, 2016

Thanksgiving

Today is Thanksgiving.  In fact, it's 2:30 in the morning and I am still awake.

I'm not making pies, or prepping the bird.  I'm not busy cleaning for company to arrive or finishing up the laundry.

I had planned to be in bed 6 hours ago.  I had big plans for a quiet day as the kids are at their dad's for the rest of the week.  I was selfishly looking forward to doing nothing.  Well, not nothing.  I had some things planned that have been neglected the past few months.

As is usual and customary, making plans is an activity in futility.

Instead of a quiet night, I ended up working until very late.  At nearly midnight, while I was still at work, I got a series of text messages from Shelbie. (The kids are at their dad's for the holiday.)
 She felt like she was having a heart attack or another stroke.  She was in extreme pain in her left jaw and it radiated down to her shoulders and arm.  She was pretty scared, as is to be expected after the month she has had.  I was pretty nervous myself.

We texted back and forth about what to do.  It's a sad day when you spend over an hour trying to decide how you will get treated if you go to the ER.   The first time these symptoms happened, I took her in and the doctor made her think she was having an anxiety attack.  She clearly was not but he also wanted nothing to do with novel idea of listening.

The second time, she had these symptoms plus an actual stroke, I took her in and the ER doc tried to convince her she was experiencing a migraine.

So...why would we go back there?  It's not so much that I don't think the doctors are smart enough to help, it's that they aren't willing to listen and help.  If they would just engage in the process and listen and think critically, it would be a much better experience for all of us.  And, it's not all of them just a couple wing nuts that spoil the experience.  I realize 24 year olds don't have strokes and heart attacks but nothing about her health history resembles a normal 24 year old.  It isn't like they are just meeting us for the first time ever!  They know our story and their ignorance and patronizing way stings even more and makes us feel so 'other'.  I hate that!  I won't put her through that either.

Yesterday was her first treatment on the increased dose of Plasma.  The last two events also happened on the night she received her plasma so I'm thinking that she has started to have reactions to the plasma!  This is bad news on so many fronts.  Our immunologist had wondered if the plasma was increasing the inflammation in her arteries.  With that increased reaction, the vasculitis becomes so much worse.  Tiny clots form, the artery clamps down or worse, scars and she is prone to clots and strokes.  Hizentra has a black box warning for creating clots and causing strokes!  Ugh.

The plasma is the gold standard of treatment for her condition of CVID and vasculitis!   They were hoping that by increasing the dose, they would be able to get things calmed down but that doesn't seem to be the case.  Without the plasma, so many things will run unchecked in her body and it's anybody's guess what will happen then.

Our team said that if the plasma didn't turn things around on its own, then we would need to seriously consider a few months of chemotherapy to destroy her immune system.  I can not even go there... not again!  That would mean a port would need to be placed but that is going to create extreme issues with her fragile arteries and then all side effects of chemo.  Aye, Aye, Aye.

So, instead of getting some much needed rest and down time, I am sitting here waiting for the phone to ring.  I spoke at length with my Wasband and we are on the same page.  We have loaded her up with anti inflammatories in an effort to calm down the likely spasms in her vascular system.  (according to the latest theories anyways) pain meds and even some meds to help her sleep.  I really didn't want her to be alone so the boys, bless their heart, are sleeping beside her to make sure she doesn't need anything.  If none of the medications I concocted work, and her symptoms continue to get worse, then we will go to the hospital.  I have to ask myself...why am I the one trying to think through this process of calming things down?

I realized tonight that we need our team to write up a protocol that we will keep at our local hospital so I don't have to be the one with all the answers that are really just a shot in the dark.

The truth is, I am scared to go to sleep.  I am so tired and I'm afraid if they call to have me meet them at the hospital, I won't hear the phone.  Not only that, my mind is going in a million different directions and then all the worry of what to do next.

I can't even remember the last time we had a Thanksgiving that wasn't centered around a trip to the hospital or sick kids.

I wish there were easy answers.  It's such a complicated situation and one problem leads to another.

Nevertheless...it's Thanksgiving.  A day to express thanks and gratitude.  And even though today has not been easy, there is still so much to be thankful for!  So much!

Our very good friends sent a wonderful surprise a couple of days ago.  The box was large and the kids were unwrapping it and all I heard were shrieks of happiness and joy!  It was a big Gnome!  He is so cute and lights up.  I will take a picture and post it soon!  Shelbie adores Gnomes!  It's a funny story that I will share sometime but it was so fun to see her so excited and happy!  It was the best surprise!

About 6 weeks ago, Spencer entered a videography contest hosted by a 'Big Deal' Videography company in the area.  The winner was to receive a top of the line Drone and a job with the company.  The company sent those in the contest random footage of either an Alaskan Vacation or a Lake Powell Vacation.  They had to create a promotional video for either place, using the footage the company sent.  I believe there were well over 30 entries.  Spencer ended up in the Top 5!  Last week, he found out he was not selected as the winner...BUT...They sent him an email saying they loved his video and would be interested in collaborating with him on future projects.

I thought that was just a nice way for them to soften the blow.  Boy was I wrong!  They called back yesterday and told Spencer that everyone had actually thought his video was the best and though they settled on giving the Drone to someone else, they wanted to offer Spencer the job!  He meets with them on Monday and then they want him to be on board for their big Social Media Blitz that starts Tuesday.

I am so happy for him!  He has been struggling for so long and working so hard on his videography skills.  I am happy that he gets to experience a little success and see his dream start to take shape.  He deserves it so much!

Sam has been sick since Sunday but he seems to be on the mend finally!  Fingers crossed it doesn't take a wrong turn and become pneumonia like it usually does.

I feel blessed to be able to take care of my kids.  I feel grateful to those who offer me work, who share advertisements for my company.  It means a lot to me.

I could go on...It's important to focus today on just the good things that make all the other crummy things worth it.  I have very close friends who are not nearly as fortunate as we are right now and that is a humbling and reverent thought.

So, as you gather around a table filled with food and full of family, be grateful.  Be happy.  Glennon Doyle Melton put it this way, "Family are the people who keep showing up.  They may be a mess but they are our mess but we are a mess too, but we are their mess!"   I love that thought!  I will miss being with my family today, the ones near and the ones far. We are without a doubt, a messy family but we keep showing up for each other and I wouldn't want it any other way!  What a great, big messy blessing that is!

Happy Thanksgiving!
























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Monday, November 21, 2016

So that's why?

It's a great day when one of God's little mysteries comes to light, don't you think?  That great day happened to me on Saturday!

Shelbie and her friends had their Friendsgiving.  It was a blazing success from what I hear.  After dinner, they wanted to go to Lava Hotsprings which is a little over an hour drive from home.  Since Shelbie still can't drive (which I've decided is dumb...another day, another story) I got to take them down.  It was dark when we left and even darker when we arrived.

The hot pools are outside and there are three large pools of natural springs, hot water.  They have some canopies over the pools, lights to create a nice little mood for soaking with 200 of your 'closest friends', (who probably hadn't showered on their way into the pool), on a 40 degree Saturday night.  The steam from the pools was heavy at times as the hot water met the cold night air.

I'm realizing that as I get older, my germaphobic tendancy gets worse or maybe it has nothing to do with my age and more to do with the fact that my germaphobic tendancy is just getting worse. I was ready to leave after about 5 minutes because as I looked across the pools with people crammed in there shoulder to shoulder, I was sicked out!  It looked like we were all simmering in a vat of human stew!   Bleh.  Gross!  It might not have been so bad if I hadn't already worn myself out trying to get changed in the women's restroom when there were 6" cracks between the dividers of the stalls.  What is the point to that? Makes me wonder if Peeping Tom designed those.  Sheesh!  People just look so much better with clothes on!  It was exhausting trying to keep pressed up against the door of the changing room so that no one could tell a human life was in there.  It's always embarrassing when someone catches a glimpse of you and the whole crowd leaves in droves, running and screaming for their life! For the record, all the women were complaining about the changing rooms!

Anyways, that's not the story here...but that paragraph just hit on several tales I could tell about my dysfunction!

So, I was sitting beside three people who were having the most entertaining conversation which I was thoroughly enjoying.  Now...they used some tasteless sort of words so if that offends you, turn back now!  I'm a big fan of calling body parts by the name science intended for them to be called, not what society has deemed an appropriate version. When I hear words like they used, it screeches in my ears, yet to change the words, all humor is lost.  So, here goes...

A guy and two girls were sitting there and these two girls, I judged to be about in their late twenties, early thirties.  They were a little rough around the edges, had a myriad of passions they felt inclined to needle into their skin and they had been greatly blessed in the way of curves.  I looked like Ethiopia next to them.  They probably could have mistaken me for the railing on the edge of the stairs.  I was afraid someone might trip over me! If I go there again, I'm going to put that orange reflective tape on the outline of my body to alert people that I'm there!  This is an important image to sear into your brain at this point in the story.

Girl one says: "I use to be so afraid of water and swimming!"
Girl two: "Really?  Why is that?"
Girl one:  "I don't know, I just felt like I could sink at any minute but then I got boobs and I wasn't scared anymore.  I just float now!  There's no way I could sink, even if I wanted to."
Girl two: " Oh, ya, I know what you mean! Boobs are God's way of saying 'You're going to make it!'

Oh my gosh!  The crazy thing is, this was a dead serious conversation!  They didn't laugh or even snicker.  No 'Ha ha' or 'LOL',  They just carried on to the next in depth topic.

But really, I think they unlocked the mystery of why I always feel like I'm drowning in life!  That must be it!

I was not blessed with the same message from God as they were...if you catch my drift!  My 'girls' are still in training!  They have been since I was 12.  I think my mom just took me on a pity trip to buy a training bra because all my friends needed one.  I didn't need one, nor did I want one but it seemed the culturally acceptable, hopeful thing to do! If you buy it they will come sort of thing... I didn't realize back then that she was actually buying me what she thought would become a life preserver.

  No one told me!  It's a shame I had to find this information out at nearly age 50, in a dark corner of a hot pool, some distance from home, by two total strangers I was stewing with in the steam!  That's just not how I wanted to find out!

Well, life isn't fair..you sink, you swim.





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Sunday, November 20, 2016

All the light we can not see

Do you spend much time looking at the night sky?  We just had the opportunity to see the Super Moon but honestly, I missed it.  I was distracted and when I did remember, it wasn't the optimal time and clouds hid the moon, super or not. All I saw was a cloudy dark sky.

Spencer recently took this picture of the Milky Way at night, up in the mountains about an hour from home. He loves shooting pictures at night.  By leaving the shutter open, he is able to capture amazing images like this as his camera collects all the light from the stars.   This picture has not been edited or changed to create more or less than what you see.


When he showed me this picture, I was amazed.  I couldn't stop looking at it.   How many times do we look Heavenward and see nothing but a few stars, the constellations we learned in 1st grade and maybe a glimpse of the Milky Way if the moon and clouds are just right.

I can't help but think about how this picture is a metaphor for life here in mortality.  It is so easy to be distracted, weighed down, even worldly in our pursuit of some definition of happiness and joy.  Troubles toil and trials come and we can so easily become beset with darkness that surrounds us.  We offer up prayers to Heaven in hopes that He will rescue us in our first, fresh moments of despair and angst.  When all we see are more problems, we give up, curse God and think he doesn't care.  We become exasperated with His silence and wonder what the point to a heartfelt prayer was in the first place if he isn't going to answer?

Remember back to summer?  You look up on a warm summer's night when the air is still and crickets keep time and contentment rests gently all around, and the big dipper sits right where it always is in the night sky.  The Big Dipper is predictable and easy to spot. We think that God is too.  We have in our mind, what seems to be the easiest way to fix our problems yet the easy way never comes.  God isn't about shortcuts and easy ways out just because we are.

This is a lesson I have learned over the years; God is never where you expect him to be but that doesn't mean he isn't here, close by, filling us with light and love.

Like this picture of Spencer's, His light is always there!  His love surrounds us in ways we can't even see!  Step outside tonight, look up into that dark sky...look at all the light you can not see!  Isn't it amazing and miraculous?

I know I have a long ways to go but I have tried to see more clearly, all the ways I am being blessed even when it seems there are no blessings to be had.  It's a powerful image...an astounding thought.

Today, in church, we talked briefly about the miracle of Jesus giving sight to a blind man.  Now, if I were in the business of granting miracles, I would probably, simply, perform a miracle.  Like, touch the blind man's eyes and voila!  He has sight.   Simple, straightforward, even predictable.

But not Jesus...He first spit into the dirt, made a clay with that and then rubbed it across the blind man's eyes then told him to go wash it off in the Pool of Siloam.  That's a little complicated don't you think?  It struck me in class that this is exactly how we should consider God to work all the little miracles we expect and require of him.  He isn't a Wizard.  He doesn't wander through our life with a magic wand, striking all the bad things into better.  He teaches us.  We have to trust Him, feel after Him, obey Him.  We have to look for him and when you don't readily find him where you think he should be, look harder, he's there.  He will be found exactly where he needs to be, working on a masterpiece of sanctification.  Step by step...he comes, miracles are felt in all the light we can not see.

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Friday, November 18, 2016

The Standard Issue

I have found myself being amazed at how difficult life can be when you weren't offered the standard issue that you perceive everyone else ended up with.  The reality of our unique situation made for one very long week!

What made it long...everyone has been in a funk!  It has made me so aggravated at times and more than once, I expressed my aggravation in an aggravated way...😒  If you think toddlers are hard, try living with three medically challenged adults who are trying to plod through life in the most unconventional manner.  It's not easy for them and most of the time, they press on in an energetic spirit but not this week.  I don't blame them but at some point, the sorrowful, bad attitudes get wearying.

I guess, if I think about it, I only get aggravated because I know I can't do anything to make their situations better so, I'm more angry with myself than I really am with them.  It's just too much heartbreak at once and I feel like I'm smothering when I see them struggle so much. So, really, I shouldn't have been aggravated with them...which makes me even more aggravated that I did that!

Today, though, things came together more than they have all week and at least we are ending the week on a somewhat, peaceful note.  Here's to holding my breath it continues!

Aside from the shortcomings of the week, it's been a week of Christmas preparations!  Not for me but for others.  One of my favorite things to do is decorate people's homes for the Holidays.  I did three houses this week and my own!  Today in fact, I reached an impressive milestone!

I have been decorating the very same Christmas tree with the very same decorations for 28 years!! That blew my ever loving mind today! Doesn't that make me like 97 years old?

28 years ago, I came to this Country ( ha ha) as a student.  28 years ago I was introduced to a wonderful family who made me feel right at home here.  They are actually shirt tale relatives, a few times removed; however all that family history works.  My dad and Carol are 2nd cousins.   Carol and Bernie are two of my favorite people.  Carol had a bright smile, loving countenance and a quick wit and humor.  She was a gifted pianist.  I spent countless hours in their home.  From the day after Halloween, their house transformed into a winter wonderland.  It was impressive.  I helped them decorate and after Thanksgiving, she would let me help her make chocolates, even sharing with me the famous Aunt Fern Wood's truffle recipe!  Yes, the Fernwood Chocolate company popular in Utah! Yes, I have that truffle recipe and a few other secrets!

Carol loved Christmas more than anyone I know.  She passed away  12 years ago, quite unexpectedly on a Sunday morning in the Fall.  For 12 years, Bernie has maintained the Christmas traditions and still makes all the same chocolates that Carol did.  Bernie is now well into the middle of his 80's.


Carol's signature color was pink and her favorite flower was a rose...so, together, 28 years ago, we came up with this tree to symbolize her beauty.  Every year since Carol's passing, Bernie and I decorate this tree together, just way the she liked it and we share sweet stories about Carol.  It was the perfect way to escape this week.

When I was getting ready to leave, Bernie gave me the best hug.  I don't get many hugs, ever...so that was awesome.  He is an amazing man!

Right after that, I left for the Teton Valley to work on the 'Forgotten Home'.  New life is coming to that project!  It's going to be exciting.  The drive was beautiful and clear and the peace and quiet was a surprising gift.
The Grand Tetons, finally have some snow!  The Grand is hiding behind that breezy cloud

This house is full of mold from a very unfortunate water leak.  This weekend, they will be spraying the entire home, every stud, with baking soda and ground walnut!  Did you know that kills mold?

All the finishes have been stripped in preparation and the remodel begins next week.  Moving walls, adding pieces from the past...It will be beautiful and amazing when we are done!

I rushed back home to get the house decorated for Shelbie's 'Friendsgiving' she is hosting this weekend with her friends.  They are a great group of girls and I love to hear them laughing when they are together.  Shelbie had a great day!  I got the house finished just in time for the girls to arrive.  They will be making their own turkey dinner tomorrow...at the Wasband's home because he has a bigger house and a way nicer and bigger kitchen.


Ready for Friendsgiving.  It's a little early for Christmas decorations personally but I have to admit, it is a nice change and really, what does it matter?
 This tree was another milestone.  It's 25 years old this week!  It was the first major purchase my Wasband and I made when we were married our first year.  I was working at a Christmas Store down at the mall and with my discount and some saved pennies, we sweat bullets as we forked over the $200 to buy it.  I love this tree!  When I got divorced, I only wanted 4 things...The piano, a set of black picture frames, a carved rocking chair and this tree.   It fits perfectly in my shoebox of a house.


This is what the tree looks like before...


It's skinny and scrawny much like us, but boy, those branches are sturdy and carry more weight than one would expect! With all the decorations on it, it's full and beautiful and each ornament tells a weighty story of its own.  There is so much to see in this tree, so much depth and so many layers.



One last picture...The mantel with our little tribute to our Forever, Angel Santa...Mike who passed away just over a year ago.



I wonder if I could cram anymore into one day!  It's pretty much a typical day in the life of me...busy as all get out! I'm on the go from sunrise to nearly the next sunrise!

Truth be told, the holidays are not my favorite time of the year for a number of reasons but I did wander back through time today, with some great memories.  Here's a little piece of trivia I bet you didn't know about me.  Before I became obsessed with keeping my children alive, I designed, created and then decorated homes in Park City for the Holidays.  It was so much fun.  I would work on my designs in June, start making them in August and then the weekend before Thanksgiving, would pack them all up, travel to Park City and decorate vacation homes with all my handmade ornaments. The owner's of the homes would show up from their permanent residence back East and walk into a wonderland of Christmas.  It was a cool gig! I can't believe the hundreds and hundreds of ornaments I made...In a single wide trailer, with a 3 year old and 1 year old...those were the days!
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Wednesday, November 16, 2016

The graveyard within

I read this poem a short while ago and it intrigues me.

You will become a graveyard
of all the women you once were
before you rise one morning
embraced by your own skin.

You will swallow a thousand 
different names
before you taste the meaning 
held within your own.

Pavana

Amazing words right?  I wish I could say that I have finally become that graveyard of once was. Instead, I find myself swallowing a thousand regrets, uncomfortable in my own skin and the meaning of my purpose here is often lost on me.

It seems there are so many people around me who have been stung with the loss of loved ones in the blink of an eye. No warning, they're just gone.  Young. Older but young all the same.  Some of them I haven't known at all, some I am acquainted with their family, some I have only had casual interaction with, even distant interactions but they have all impacted me, all the same.

I probably spend too much time thinking about death but I can't help wondering if those who have passed on, did so, content with their life; if they could look back and be satisfied and happy with the person they became.

Sam received a special blessing two weeks ago and he was promised that when his time in this life is done, he will know he had accomplished everything he was meant to do here.  That is simply a staggering thought to me. A peaceful thought.

This week has been a week of wrestling with these restless thoughts of my own.  I feel dragged down and done, yet with this feeling of panic that there is more I need to do, want to do.  My thoughts dart around looking for that one satisfying thing that will bring contentment, creativity, fulfillment.  Something that is as far from depressed and drudgery as possible.  It seems only a distant wishful sort of thought.

We are way off our regular schedule and the time to finally start processing and recovering from the month we've had has arrived.  All of that makes for a long week.   We won't be able to do Shelbie's transfusion this week which is a shame.   With all her mouth sores and low counts, the extra immunity would be welcomed.  The supplier wasn't able to get the increased dosing of plasma out to Utah Pharmacy in time and they weren't able to get it to us in time.  We probably won't even receive it until Friday.  It's a huge undertaking to make the nursing company completely revamp their schedule to accommodate us and I'm not about to put that pressure on them. If we infuse Friday, then next week, we either have to infuse Friday again the following week or Thursday but then we are into Thanksgiving and Black Friday so that won't work...  I just need simplicity in my life and infusion isn't a battle I'm willing to fight.  These things happen.

Even though it seems we are in a strange funk of growing pains, some good things have happened.  Sam is officially registered for College.  That was an undertaking this morning.   He only suffered a few panic attacks today at the thought of more schooling but he will survive!  I only suffered a few panic attacks knowing that my youngest is in college and that Christmas is coming and I haven't even given it one single thought!

Well, I digress.




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Monday, November 14, 2016

Status Quo

I lucked out this weekend.  I was suppose to make a quick trip back to Utah to drop a girl off at the airport. It was actually something Shelbie had committed to several weeks ago but since she can't drive... It's a long story...Anyways, I was prepared to do that but to my surprise, Spencer said he wanted to take the girl.  I was so relieved because I have hit the proverbial wall.  I felt guilty because I knew he wasn't feeling very well and I could see that he was as tired as I was.

On got an unexpected call from our Gastroenterologist on Sunday afternoon.  I was surprised to hear from a doctor on a Sunday but grateful for her call.  She wanted to visit with me about some issues that she didn't want to discuss with the kids around.  I so glad that she was sensitive to whole situation.  I really like this doctor!  She also told me that she had been doing some studying on Dyskeratosis Congenita and wanted to reassure me that we were covering all of our basis.  There is a high rate of cancer of the gut in DC people so we need to make sure we are managing symptoms and watching for changes.

I was relieved when she said that she really enjoyed our family and was looking forward to working with us and being a part of the team.  She was happy that I was a researching mom.   That helped to hear that after being kicked out of that appointment last week.  I don't think I am an obnoxious mom and I rarely get angry so I have been wracking my brain trying to figure out how I made that other doctor so angry. Oh well, moving on.

Today has been a weird day.  Just some random energy that didn't feel very good.  I felt it in all of us tonight.  Not entirely sure what's up.

This week, Shelbie starts her new dosing of plasma.  Since she has so many complicated things going on, they want to keep the rate of infusion slow.  By slow, I mean over 7 hours!  It's strange to me how this feels like forever.  It's only 7 hours.  I hope we start seeing some benefit to the increased dose.  Shelbie's been so tired and her mouth is full of ulcers because her white count has been so low.

The boys have a handful of tests to do this week but no planned trips out of town!  I need to start getting Sam's follow up plan for his brain abnormality underway so, no rest for the wicked.


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Saturday, November 12, 2016

We escaped

On our way out of Salt Lake on Wednesday night, we passed an Escape House.  The kids are always talking about this escape place down town so, in my effort to recoup from a rotten sort of day, I told Shelbie to call and reserve us a spot.

The one Shelbie signed us up for was a mad scientist themed room.  The description said there was blood and gore and surprise elements.  For some reason, I thought that meant there would be people jumping out at us while we tried to escape a room so I wasn't exactly going in to this party very excited.

The blood and gore were stickers and paint and the surprise element was giant stuffed spider that fell from the ceiling.  However, we had to escape this room in the dark! Pitch blackness.  Our first chore was to find 4 sources of light.  Those sources of light were three half dead, tiny dollar store flashlights and an old lantern that was only working half the time.

There were various clues hidden, codes and puzzles that unlocked doors and boxes and one clue even had us gathering notes to play on a very old organ.   We had an hour in total darkness, except our dying flashlights to get four chains unlocked and a key code punched into the escape door.

We had so much fun.  I was surprised at how much fun we had.  The girl running the place could see us via cameras and microphones to hear us.  I'm sure she was amused at how stupid we were.

We escaped with 11 minutes to spare.  The newest record apparently so I guess we weren't that dumb.  She said most groups have more than 6 and get out with just seconds to spare.

As we were driving home, Shelbie commented that she thought the escape room was a metaphor for our life.

"Why, because we are half dead, in darkness and trapped with no apparent way to escape?" I asked.

"NO.  Because we all worked together to get out.  That's what we do as a family.  We go through everything together and we are there for each other and we make it out together and alive and laughing."  She explained.

She's right.  I can't think of any other kids I would like to go through these hard things with.  They are patient an resilient and try to look on the bright side.

I am amazed at how quickly we have fallen back into a pattern of normalcy even when things can not possibly be normal.   Shelbie is in good spirits, very tired all the time and a little traumatized but she wakes up each day and does what she has to in order to get caught up on work.   Spencer is working hard and he doesn't skip out on anything even though his heart functions in fits and starts.  Sam has taken his bit of bad news in stride.  I actually think Spencer and Shelbie were more saddened to hear of Sam's brain problem than Sam was.  At least, he didn't let on to be too scared.  Worried, a little and maybe as time goes on and he has a chance to really process things, it will make more of a difference to him.

Today Sam hasn't been feeling well at all and has had one of his bad headaches.  He has had a really bad tremor too and his heart rate is clipping along.  His usual heart rate of 35 was in the high 70's and 80's this afternoon and his blood pressure was really high! 170/70.  Sam runs a low blood pressure too.  I really wanted to ask him to stay home tonight but as I eluded to that thought, I knew he wasn't going to slow down on account of his crummy health.

For me, there are still moments when I feel trapped and wonder how our circumstances are ever going to improve but, then I look at my kids and they are still moving ahead, holding out that everything is going to be okay.  So, I'll tag alone for the ride as we work together to carve out a life worth living.  I've been blessed to be able to let them go and not be consumed with fear.  I've been blessed in some ways, to be emotionally distant from the latest blows.  I'm trying to keep my perspective on the blessings and good gifts we receive from a loving Father in Heaven.  I'm not always successful on this front but I am making a more concerted effort to be a gracious host to these difficult things.


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Thursday, November 10, 2016

Surprised

We've been in Salt Lake again.  This week was mostly to meet our new Gastroenterology doc.  She was pretty great.  We've been more than blessed to have put together such a great team of doctors this year.  It's been challenging and exhausting but good.  In the past, I spend a fair amount of time getting prepared for each appointment.  The past few months, I haven't had the energy or mindset to do that.

There were so many surprises in one day of clinic.  We arrived pretty late on Tuesday night.  Once we got settled in the hotel, I sat down to check emails and make sure I had all our appointment times straight.  There was a message from MYChart and a letter from our Neurologist that Sam saw a few weeks ago about his vision loss.   I was not at all prepared for what I read next.

Sam has 'Low lying cerebellar tonsils'.  This means that there is a part of his brain that is elongated and pushed through an opening in the base of the skull.  It can also mean he has a disease called Chiari Malformation.  We won't know for sure until more testing is done.  It could be that his abnormality is mild.  When the cerebral spinal fluid is blocked, bad things start to happen. The doctor didn't give any specifics.  We will follow up with a neurosurgeon but it made for a restless sleep on Tuesday night as I worried about more brain defects in my kids.

What I find interesting about this is that it can be found in people with Dyskeratosis Congenita and symptoms, if the abnormality is bad enough, can mimic a stroke.  I can't help but wonder, the more I think about this, if perhaps this could be what Shelbie has as well. I have also found some correlation between Hashimotos, low lying cerebellar tonsils and strokes.  Hmmm, Shelbie has Hashimotos and has now had two stroke events.  Maybe this will end up being a blessing more than we realize.  So...as our world turns, hopefully more information will unfold.

Our first appointment of the day was at Faint and Fall clinic for Spencer.  The doctor came in and asked if we were only there because they told us to come.  Basically, we were there because they told us to be there.  I don't find that they are very helpful.  In fact, for the first time in 24 years of advocating for my kids, I was kicked out of an exam!!  (Insert angry emoticon here)  I hadn't said anything controversial or rude in fact, I was acknowledging that Spencer's heart issues are complicated.  The doctor even agreed that there are definite electrical issues with his heart and definite problems with his autonomic nervous system.  We seemed to be getting along fine and then she just said, "You know, I need to ask you to leave."
"Why?'
"It's just standard protocol." was her reply.
I walked out and was not happy!!  I was so not happy, I threw my stuff on a chair beside my Wasband and Shelbie and Sam and walked out of the clinic into the corridor.  I was kind of just done!  She saw Spencer for 3 minutes after his heart stopped.  She knows nothing about what he has been through the past two months.

As I was leaving, I saw a lady walking towards me.  She was a tall, heavy set woman and her hair was tattered and the color of a Smurf.  She wore a bright blue tunic to match her hair and blue pants.  She was sobbing.  She was almost hysterical.  In a very strange moment, our eyes met and it was as if she was begging for help.  Without even a thought in my head, I put my arm around her as we walked and said, "Let me help you!"

I surprised myself.  I don't make a habit of grabbing strangers let alone telling them I want to help. She stopped and said, "I'm so sad!  I'm just so sad!!"
"I can see that you are sad.  I'm so sorry. Are you alone?"
"Yes! I'm all alone and I'm so sad."
"I'll stay with you so you don't have to be alone.  What happened?  Do you need a hug?"
"Yes I need a hug!"

I held her as tight as I could and she cried into my shoulder.  There, in the middle of the hall with swarms of people bustling by and it was as if she was the most important thing in the Universe to God.  It was an incredible moment.

Through her sobs of flowing tears, she said, "I know I will be okay.  I'll be okay.  Thank you for helping me." and she rushed out of the hospital.  All my anger from being kicked out of Spencer's exam and melted away and my  heart felt warm.

Apparently, in my absence, the doctor was trying to convince Spencer that he was just depressed and his heart would improve if he didn't worry so much about his condition.   I was ticked.  Spencer has moments of melancholy but he of all people, lives beyond his health issues.  When she finally invited me back, she said she wanted him on compression stockings and a compression shirt since his heart has a hard time moving fluid from his extremities and abdomen.  I don't get it...She claims he would get better if he wasn't depressed yet acknowledged his heart sucks!  We will probably not be going back to that doctor.

Our appointments with the GI doc went well.  Spencer's gut is a mess.  Both boys have some major GI struggles and she is doing a ton of stool studies to check for inflammation, bacteria, fungal infections and pancreatic issues.  She thinks that Spencer's symptoms have a lot to do with his Pancreas.  Sam has had bouts with high liver enzymes and pain around his liver.  With the next bout we will do an ultrasound to make sure he doesn't have any issues starting in his liver.

She wants Spencer to start an extremely restrictive diet called the FODMAP diet.  It is a diet of elimination.  After he is on it for a month or so, we can start adding foods back in one at a time.  He has been on dairy free and gluten free diets without any changes in his health so I'm not holding my breath that this is going to provide any relief.  Rather than cook for several different diets, we are all going on the stupid diet just to keep life as simple as possible.

The only meats you can have are red meat in moderation, chicken, fish and Kangaroo! Yes, Kangaroo.  Since red meat makes Spencer really sick, that one is out, he doesn't like fish so that leaves us with Kangaroo and Chicken!  I'm fresh out of Kangaroo and don't have another trip to Australia planned until December so I guess we will burn ourselves out on chicken!  Unless, someone reading this has some Kangaroo steaks they can share... Call me if you have some to spare!

It was just an all round surprising couple of days.  I'm trying to remain positive that somehow, Sam's brain issue is to help guide us to a possible break through in Shelbie's stroke like events.  However, the thought of my kids undergoing brain surgery freaks me out!  I'm trying to save my meltdowns for the day when I know for sure that will be the course of action.

In the meantime, we are holding on and holding out that someday soon...things will get better for us.  It's been a rough and tough year and I'm surprised it hasn't let up yet!





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Friday, November 4, 2016

Blessings abound

It's been such a busy day just trying to restore order to the house.  Sam did a great job of cleaning up after himself but I left it a wreck.  The vacuum had been broken a few days before I left and was in the repair shop, the washer was in pieces and the garage was full of junk that was in my car to take to the thrift store but when everything happened so unexpectedly, I just dumped it wherever I could and left.

Today, I got the vacuum back, the washer got fixed, laundry is nearly done, I made it to the thrift store, bills got paid and a bunch of other things.

I had a great surprise when two of my friends came over to haul an old chair to the dump that has been taking up residence in the garage.  They also took some things that I was going to try to sell and they are going to take care of all that for me.  It is probably the greatest thing anyone could do for me this week!  I was so relieved.  Everything felt like it was crashing in on me...I know, weird.  Some people appreciate meals...I just appreciate getting junk out of my way!!  When my life feels overwhelming, the first thing I do is throw everything out!  Order is everything to me.

I was going to sell a handcarved rocking chair that my Wasband made for me when Shelbie was born.  As I was moving it, I got a little nostalgic and couldn't part with it.

Aside from the mundane chores, it was a tough morning.  I left early because Shelbie was sleeping and since Sam was at his dad's and Spencer is in Utah working, I thought she would sleep all morning and I could get my errands run.  She called me as I was almost home and couldn't get up the stairs from her room in the basement.  I felt bad for leaving.  She didn't wait for me to get home so she crawled up them.  She refuses to take my bedroom which would be so much easier on her and me really,  I could care less about the kind of room I sleep in.

She has a photo shoot in the morning up in the Teton Valley so Sam drove her up there to look around in order to find a good place to do the photos.  The house was so quiet and then everything that happened this week caught up to me.  I make every effort to keep myself together and positive for the kids when they are around.  It helps them cope better and we get back into our groove sooner, or so I like to think.  There weren't even gone 10 minutes and I couldn't stop crying.

When my friends came to the door, the 2nd wave of tears hit.  It was more an overwhelming feeling of being blessed, mixed with sadness that Shelbie had to crawl up the stairs.

The kids got home just after I pulled myself together so it was good timing.  It was so nice to visit together with our friends.  That in itself is often the greatest service because we always feel so isolated and lonely.  It was perfect.

This afternoon, my friend and owner of the architectural company I use to work for came over to look at my wall that leaks water.  Another amazing blessing.  The foundation was built for brick but they ended up putting cultured stone so water is leaking from the top of the foundation wall where there are no finishes and they didn't use flashing or anything else they were suppose to.  He has some guys who are going to come and take off about 2' of stone and lay down some ice and water shield and then some flashing, then re-stone it.  He has been swamped with work so I am going to do some contract work for them to trade the bill to repair my house!

I really feel that Heavenly Father is taking good care of us.  Shelbie went to sleep right after our friends left and she woke up about an hour ago.  She is really dizzy and nauseated.  I took her blood pressure and it is still really low.  I gave her some nausea meds and put her back to bed in my room.  I really hope it's just from being so tired and a change in meds.  I have a little pizza party planned for her and her friends tonight.  She has some great friends and they have missed her so much.  They were going to watch movies and snack.

Today has been full of great things.  Each day, I'm sure we will cope better than we did today.

Thursday, November 3, 2016

Home for now

We made it home tonight!  It was a long, long day.  Not that much was happening with us, other than a crazy, intense blood test that took two days to plan for.  That was done by 10 this morning but then we had to wait for rounds and for the biopsy report to come rolling in so it was late in the day by the time all the loose ends were tied up.

While we were waiting for pharmacy and discharge papers, Shelbie sat in the rocking chair by the window and I sat across from her.  It might be one of the saddest moments of the year.  I asked her how she was feeling about coming home, about not being able to drive for a couple of months or take a shower alone and all the other things that transpired this week.  To be honest, I haven't even sat still for a minute to think about it myself.

She immediately broke down and looked at me and said through her tears, "I don't ever want to forget you mom!  I don't care what else happens to me, I don't care if I die, I don't want to keep living if it means I forget you."

Those words were the most real things I have felt all week.  I have been successful in being disconnected through this whole ordeal.  Only once, one late night did I start feeling a little panic.  It took all I had to keep from crying.  I knew the nurse would come through the door any minute I didn't want us to be unraveling before her eyes.

The doctors didn't spend too much time on the problems they found in Shelbie's brain but if you have the brain of an 80 year old, and you are only 24, you may have a problem on your hands.  Dementia is the natural course of aging.  Oddly enough, mitochondrial testing the kids had years ago came back with some dementia markers for all three kids and Shelbie's memory has gotten so much worse over the past two years.  More times than not, she comments on how she feels 'lofty' and that her brain is floating and not keeping up with her eyes.  I'm not sure if any of this is related but it's a scary thing.  I didn't know that after everything Shelbie has been through, that was the thing that scared her the most.

I hope she doesn't forget me either and the very thought makes me so sad.

Of course, she is scared of other things too.  They aren't sure if she will have another event.  They aren't sure if the measures they are taking will protect her enough.  All we can do is hope and pray.  She said, "Every day we wake up could be our last day!  None of us can take a day for granted.  We all have such complicated and bad things happening, any one of us kids could die at any moment."

I was glad that she was getting her thoughts and worries out there but boy, was it tough to hear.  Every time Spencer is out of my sight, I worry.  His darn heart is just a mess and it worries me.  It worries me that he is either experiencing tachycardia or bradycardia, there is no steady, normal beat. He drove to Utah this morning for work and missed being a part of an accident by a hair!

Now, when Shelbie leaves for work, I will have to try hard to not panic.

It was even hard to say goodnight.  This past week, nurses were monitoring her, checking on her and I was sleeping right beside her.  Now, she's on another floor of the house and it's hard.

The reality of life now is starting to hit.  I have a list a mile long of things to get done tomorrow and another mile of thoughts to sort out and work to catch up on.  I don't imagine the weekend is going to be a very restful one and guess what...we do this all again in 4 more days!!!  Another trip to Utah...another couple of days of testing for the kids!  

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Wednesday, November 2, 2016

Hard to complain

It's hard to complain about anything in this hospital...Well, it is plenty easy to complain but you feel rotten doing so when your neighbor is facing an uphill battle and weeks on end of being a patient here.  We really have nothing to complain about.  I am fully aware of the fact that things can always be worse!  We have yet to experience anything quite like some of the suffering I see here.

Shelbie had an alright day.  She had a biopsy today on her arm that is streaked up and down with petechiae and some of that has spread onto her chest.  Her IV infiltrated  today which only adds evidence to the mounting problems with her vascular system. They haven't even been using her IV the past two days so it's only had saline through it.  The hives on her other arm are angry and sore.

The MRI she endured last night only showed that her right leg is larger than her left.  There were no hidden clots. The swelling and pain remains a mystery of sorts.

Tomorrow, they will do a very fragile and specific blood test on her platelets.  She has to be fasting and people from the specialty lab at the U have to come to her room with controls, draw her blood and carefully walk the samples back to the lab.  They can't be jostled or messed with in any way.  Good grief...It sounds like a million things could go wrong to end with a false reading.

After that is over with we get to go home.  Our doctor was so apologetic that we couldn't leave today.  I could see how much it pained him to say that.

The plan is to increase the plasma transfusions incrementally.  The hope is that it will calm down all the inflammation she is experiencing her vessels and slow the progression of the growths in her lungs.

We were hoping to see her Cardiologist today to review the growing problem with her tricuspid valve but he didn't come and quite frankly, we are leaving whether he comes in the morning or not.

We had a good visit with Dr. Gundlapalli as well.  He is going to be consulting with an Autoimmune Neurologist because they have picked up on so many neurological problems.   They haven't spent too much time discussing the issue with the white matter in her brain.  The meylin is showing deficits and there is a theory that maybe, the nerves surrounding her vessels are becoming swollen and that is setting off these other issues.  Somehow, all these things that have fallen like dominoes this week seem so disconnected.  It's trying to sort it all out that is the issue.

Dr. G. said, "Shelbie, you probably don't realize how important you have become to this hospital.  You are educating the next generation of specialists and researchers."  It's true.  I can see the eagerness in the eyes of all the students and residents who pass through here.  One Fellow even commented that Shelbie is an example of the theory of John Hickam, a faculty member at Duke, called the Hickam Dictum.  His theory is that one person can have several unrelated diseases.

I'm not entirely sold on that.  our family seems a little ridiculous and we have gathered up far too many rare diseases but I also see his point.  Other doctors try to explain it all away with one simple boxed disease you just add water to and that isn't the answer either.

We have met some very nice people here.  All of the nurses have been great and the volunteers very kind.  One lady who volunteers here, came in and gave Shelbie a boxed set of Skull Candy headphones.  They brought in gift packages but mostly we've enjoyed the stories and visits.

The doctors have acknowledged that finding a way to live in a normal state is going to be hard.  Since there are still so many questions, missing details and blank spaces for what happened last week, what happened last December and the clot in her lung, they can't say when the next episode will happen.  They know they can't fix the problem, they can try to slow things down but there is no fix.  There is no way to know when it will happen again and to what degree and severity.

Again, I can see that God is wanting us to rely on him and only him.  He has put us in these situations that can only be managed with Faith.  That is both comforting and terrifying.  I have had to learn to live that way with Spencer, especially knowing that he is not on any heart medication for another few days and living with a heart that doesn't keep the steady rhythm that God intended. Every time he leaves the house, I have to focus on hope.  It's a hard way to live and now things just got a little harder.

Here are the highlights of today.

This was a service dog in training just outside Shelbie's window.  The trainer made her sit down with her nose to the wall while she went around the terrace hiding treats.  On command, the dog had to go and sniff them all out.  We laughed...she has a ways to go. 

Getting ready for the punch biopsy.  All that discoloration on her arm is petechiae.  It follows her veins and arteries which is interesting you can actually see the pattern of her vessels. 

While Shelbie napped for a bit, I stood up on the second floor and listened to the piano music.  So many volunteers keep this place classy.
 I was ready to drop today so I too went up to her room and flopped on the couch.  I was out and when I woke up, the room was so dark and I woke up crazy!  I couldn't remember where I was and why Shelbie was in a hospital bed across from me!  That's what happens when you don't get enough sleep and then too much all at once!  

 Another day comes to an end.  Shelbie got to facetime with her little sister tonight, her dad and the boys and even her cousin so that was good for Shelbie to connect with family.


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Day 6

Yesterday was a mixed bag.

They took Shelbie for her MRI at 5:30.  It was suppose to take about an hour and a half.  By 8:15, she still wasn't back!  I was getting really nervous as I watched the seconds tick by.  Finally at about 8:30,  they wheeled her through the door of her room.  I could tell from the look on her face, she was not okay.

We helped her into bed and she sobbed and sobbed.  3 hours in the MRI!  They had a very hard time with the test.  Interventional Radiology was overseeing things and they wanted to get it right.  Within seconds, her Aide was in the room and immediately picked up the phone for the nurse to bring pain meds. I was so impressed with their quick response.  I guess the guy who transported Shelbie ran straight to get our nurse when he left our room.

While she was gone, Dr. Gundlapalli came by to see her.  He is our Immunologist.  I love him as well.  He confirmed that we are dealing with a rare condition of the vessels.  Takayasu is the name.  He said there are a few different names that often get used interchangeably but they all mean the same thing.   The vessels become so inflamed and create tiny blood clots.  The vessel can become scarred, narrowed and diseased.  At times, without warning, it can clamp down on itself and blood flow stops.  The little clots can build up and you experience small strokes or, life threatening strokes.
He told me the treatment is going to be tricky.  For starters, with Shelbie's permission, they will increase her plasma meds a gram a week.  The second line of treatment is massive amounts of steroids.  Shelbie does not manage well on steroids so that will probably not be an option.  The third line is a chemotherapy drug, possibly Rituxan.   She was on that in 2010 and that was no fun but in the end, it did fix  her platelet problem.  Dr. G thinks that is going to be our best move but we need to think about that some more.

Dr. G said, "I am so sorry.  We need to watch Shelbie for PTSD.  This is not going to be an easy thing to live with and the fact that she had an event while driving alone is terrifying for me, I can only imagine how she feels."

Honestly, I hadn't thought about that.  It still hasn't really hit me how horrible things could have been!

He went on to ask how I was feeling and doing with all this.  I told him I'm tired and trying to figure out how we are going to move forward in making a living and taking care of my kids.  He said, "You need to keep yourself healthy and manage the stress better.  I haven't had a chance to talk to you alone but Dr. Shami and I were talking about Shelbie's case and we both agree that you are the sole reason she is alive today.  You have done your research, kept up with us and even a few steps ahead.  You questioned the process, put pieces together.  We needed your guidance.  Please take care of yourself."

That hit me like a sack of bricks!  Most days, I feel like I have one foot in the grave. I don't know how to manage the stress of three kids struggling.  My Wasband has really been helpful this year but it's even more than the two of us can always manage.  I know I need to make some changes with my employment but it's going to take some fresh courage and new faith to make that change.

Dr. Gundlapalli and Dr. Shami are worried about how to support Shelbie as her life changes a little and she has to slow down a bit, for awhile at least, and give up a little of her independence.  I am worried about that too.  I'm not a fan of depression and feeling sorry for yourself.  I don't want her to give up her business and stop altogether.  We have a lot to think about, a lot to decide, a lot of leaning on God.

I ran out to get her a Frosty last night after we got her back into bed.  She hadn't eaten most of the day and had to start fasting for her last big test today.  They brought her some food but it was horrible tasting!  While I was out, Sam texted me that he needed some help with his Financial Aid papers for college.  My heart took off racing and flip flopping.  I got dizzy and had to pull over.  I know it was just a run off of anxiety from the day.  I sat there a minute and took some deep breaths.  I need to stay focused on this moment, not a hundred moments from now.

I think we will be able to go home this afternoon or tonight.  I want to be home but it's nice to be in a place where I know she is safe.   Our dear friends bought us tickets to see the Bar J Wranglers on Thursday.  They were going to come with us but they will not be able to be there.  Hopefully, we will be home in time to still go. I know it will make the kids so happy to do something fun together.  So, that is our goal...get home and do something fun and pretend to be normal as we figure on a new one.

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Tuesday, November 1, 2016

Day 5

Things are finally falling into place.

This morning, Dr. Shami came through with his team and it was a great visit but emotional as well.  I felt so much gratitude that God blessed us with Dr. Shami.  He has definitely been an answer to prayers and today, I let him know that.  Each conversation we have with him, another piece of the puzzle is uncovered.

So, here is today's run down.  The case for a rare arthritis of her arteries is even stronger.  She is now covered in hives so they have discontinued anymore tests with contrast and even CBC's have been discontinued.  Every time they do anything with her veins and arteries, she has an 'event'.

This morning, she experienced some abnormal bleeding in her gums, lots of blood!  Her arm is covered in Petechiae as well, just from the blood pressure cuff.  Dr. S looked at it and I said, "Oh, don't worry about that, it happens all the time!"

He looked back at me and said, "It's not suppose to happen at all!"  I always just thought it was a vasculitis kind of thing because of her hypermobility and connective tissue problems but he said it almost always means her platelets are not functioning.  Her platelet count has been dropping since we got here but they are still high enough, we shouldn't be seeing petechiae.  They are calling in some docs who specialize in platelet disorders.

One of the things that has been throwing off the docs is the fact that her inflammatory markers keep coming back normal.  They consulted with our Immunologist who follows Shelbie and her ITP and CVID and he said that the plasma she receives changes the results on the inflammatory tests so those results can not be relied upon.  Our immunologist agrees that we are looking at a rare arthritis of her vascular system.  We are hoping to see him today or tomorrow.

They also found that the tricuspid valve in her heart is getting worse and there was more regurgitation on this past echo than there was last year.  That is a worry as well and they may start considering a repair of the hole in her heart since it is starting to create problems in her heart.  We will hopefully see our Cardiologist today as well.

They think they have done all they can for Shelbie in determining what happened.  We need to wrap up a few tests today and hopefully, they will let her go home tomorrow afternoon.

They have told Shelbie that she can't drive for two months, she isn't even allowed to take a bath or shower alone for two months.  We have to address the problem with the stairs in our house.  They are concerned about her going up and down them, especially since they aren't carpeted.  Her bedroom is in the basement as well as her studio and there isn't a bathroom down there either so she is always up and down.  I'm not sure I can afford carpet or to put in a bathroom so I offered to give her the master bedroom on the main floor and there is a big master suite she could have as well.  She doesn't love the idea but I think it's the best option we have right now.  We will continue to think this through.

Side note...my basement has been getting water in it since I've been down here.  The boys were kind enough to not tell me and just take care of it.  Spencer had to pull back the piece of carpet just laying there because it was soaked through.  The water is coming through the front wall of my house so it's not going to be an easy or cheap fix!  Arghhh, another reason I don't want to finish the basement with carpet and a bathroom.

Anyways...

As far as treatment goes, she has to continue on the blood thinner shots but it creates a very complicated situation with her platelets and ITP and now, abnormal platelet functioning.  It will protect her from the tiny clots caused by the Arteritis but it is making the other issues worse.

I think they are going to increase her plasma transfusions and possibly add a strong drug to shut down her immune system...I'm wondering if it will be a chemo agent like we have had to do in the past.  Time will tell.

The doctors and nurses are continually commenting on how complicated and difficult Shelbie's case is.  I am starting to feel like I might need to consider moving closer to the hospital here.  I don't see how anything is ever going to get better...just more progressive.  It's an overwhelming thought at this point.  Everything is sort of overwhelming.  I need to find a different job for sure.  I have missed the bulk of my income by being here this past week and we have to come down every week until Mid December!  It's starting to feel like a lot for our little family to recover from.



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