Tuesday, January 30, 2018

The Broken Finger Saga

Today we had an ortho appointment to see how the infamous broken finger is doing.  There is finally some good bone healing but not 100% yet.   Another 4 weeks in a splint but just at night.  They want her to try to start working the ligaments and getting it to bend better.

We felt pretty good about that plan when we left.  Her finger is still a little odd looking but way better than it was.

However, as the day as gone on, her finger looks terrible.  It's so swollen which I don't understand.  It's bright red and hot and drooping way more, just like it was when it was first broken.  I'm so confused about what is happening.  I guess we will give it a few more days and see how things transpire. 

Shelbie has really stepped up to some major life challenges and I'm proud of her.  The whole driving issue is so hard.  I can't even imagine how difficult that would be, especially at her age.  We have had some good talks and she decided that she wanted to give her car to Spencer for now.  Maybe, if we can get the seizures under control and managed with medication, she could drive again.   Spencer needs to sell his car so I will drive Shelbie's car down to Utah tomorrow and bring the shuttle home.  This way, he will be able to sell his car and when it sells, he will use the money to pay off the snowmobile.  He will also take over Shelbie's lease payment she makes each month, so really, it's a win win...I mean sort of a win.   It's just one of those bittersweet things.

It's been cool to see how much they love each other.  Shelbie offered to keep making the payment so Spencer can save more money for a down payment when we have to turn her car back in.  Spencer is worried that giving him the car will make her feel more sad about her situation and he doesn't want to feel bad about losing her car.   It's all going to work out. 

I actually did get some good news...Last week, my Wasband determined that he is no longer going to be able to help the kids with their car insurance.  They are not in a position to take care of that themselves so I will help them.  Over the past few months, I've been trying to get my car and house insurance lowered but my insurance company hasn't been super helpful in achieving that.  When I had to add the cars and drivers onto my policy, I shopped around and guess what?  I'm actually going to save $200 on car and house insurance!  How amazing is that?   I feel a little relieved. 

Sometimes the little things can make or break you. Anyways, my pity week has been going so well.  I'm having a great time.  I haven't heard back on my test results.  They should be in but I am not going to call until probably next week.  I just really need to focus on Spencer's heart the rest of the week.  The loop recorder has picked up so much tachycardia or fast heart rates over 200 bpm at times that don't correlate to exercise.  The last email they sent two weeks ago said they would discuss what it meant at our visit this week. 






Monday, January 29, 2018

Good news or bad news?

Do you want the good news or the bad news first?

If you are looking for good news, you might want to keep looking because you won't find it here.  You won't find even the slightest thing resembling good news here.  I thought about dressing things up to sound like good news, you know, using phrases like..."Well, at least..."  or "It's okay, I know something good is just around the corner."

But then I thought to myself, 'Nah' who cares?  The truth is, it's bad news.  Don't worry about trying to pray it away, convince me it's going to work out, brighter days are coming.  In fact, you don't have to say anything.  I don't even care if you read this to the end.  I just want to hang out and enjoy my bad news.  It's so exhausting trying to turn bad news into good and I'm tired.  I'm probably going to have a week long pity party, with a good measure of anger and resentment and maybe even some bitterness and I will celebrate in my pity-ness like I've never celebrated before.  So, that's my disclaimer.  You've been warned.

On Saturday, Spencer was in a bad accident.  He had been invited to go snowmobiling with some friends.  Long story short, there was a massive rock under what looked like a snow drift, he hit it head on, his body slammed into the handle bars, impact to his pacemaker and was then thrown 15'.  The snowmobile is totaled for which he has to pay for.  We aren't sure the damage to his pacemaker but we will find out on Thursday and he is a little banged up, but not dead.  His friends weren't far behind and helped him after getting the wind knocked out of him and made sure nothing was broken, like his neck, before helping him up and getting the sled back to the cabin. 

I did not handle it in the best way.  He obviously didn't tell me right away.  It took Shelbie breaking the news to me Saturday night because he sent her pictures of the totaled sled.  I sent him a text asking what happened and if he was going to live another day.  He simple stated the problem and that he would be fine.  I literally couldn't speak to him for a full day.  I was both angry and scared but my fear of what could have been really translated well into anger. Tonight, I finally talked him and apologized for being less than understanding and compassionate.  I know it was an accident, but he knows how much I loathe snowmobiles.  It seems that men get on a snowmobile and lose all sense of intelligence and think they become some Greek God, invincible to the mountains that tower over them. 

Today, I saw the Kidney doctor.  Unless by some miracle my labs come back perfect, I will be headed for a kidney biopsy and another procedure called a Cystoscopy to rule out cancer of the bladder lining.  There is a slight chance that the cyst I have had in my kidney since 2005 ruptured in October causing all the blood and pain.  It showed up on an ultrasound in August but was gone on the CT Scan in December, unless of course the Radiologist screwed up, which is plausible. 

So, the likely winners in today's visit is bladder cancer or some form of chronic kidney disease and it's just a matter of time before I lose function of my kidneys.  He pretty much made it sound like the biopsy for sure is inevitable and will probably happen next week or when the surgeon who does these is available.  Actually, now that I think about it, 'ASAP' in medical terms translates to 3 months down the road...So, maybe I'll actually be able to dodge the biopsy cause by the time they get me in the books and we can just cut to the chase with a stage 3 cancer.   He feels like there is something, Lupus, attacking the filters of the kidneys. 

It's been bothering me that after 10 days on antibiotics, the white cells, red cells and protein etc. were not much improved. I asked if maybe I just need more antibiotics and he doesn't think I ever had an infection at all; just a dying kidney.  Nothing ever cultured out.  I should have the lab reports and UA  in a couple of days.  He said, "Call me.  The secretary will track me down wherever I am and we will schedule the biopsy."  So, that makes it sound like he's planning on me not getting better.

And...as luck would have it, they don't use sedation when taking out a piece of your kidney.  Nice.  I'm super excited which is great actually, because then I can just drive myself home since I won't be all drugged up.  It's so annoying when you have to sleep through medical procedures, who has time for that?  Seriously, the least they can do is let me take a freaking NAP while they take out bits and pieces of my kidneys!!  I asked Why?  "It's more efficient this way." Yep, I see.  I hate the medical community.

I'm so completely beside myself.  For the first time in my LIFE, I feel angry and put upon and bitter and resentful and yes, hopeless.  I feel so hopeless.  I don't understand, even in the smallest of ways what God is intending to do here.  I'm don't understand what I am to learn that I seem to be missing.  I don't understand how He thinks I can take care of my three kids, work the way I do and deal with cancer or kidney disease all at the same time.  Nothing is working out in my life and hasn't worked out in months.  I am so freaking exhausted and tired of one thing after another. 

I try so hard, harder than is humanly possible, most days to find the silver lining.  To trust God.  To have faith.  To believe that all of this really will come together for our good but honestly...when?  When do we get a break?

It's so frustrating.  Even besides all this, I'm so frustrated and angry with how I am handling my life.  I don't even recognize what I am becoming.  I have never been here before.  Never.  Feeling so much despair is new territory for me.  Feeling so frustrated with God is also a completely foreign feeling which feels miserable and horrible.

So, excited for tomorrow's tragedy...

Sunday, January 28, 2018

The unraveling

This week is going to be the start of the great unraveling for us...actually, probably not THE great unraveling as I'm certain there will be plenty more months like this.

I've been anticipating these appointments with Spencer for weeks now, since Christmas. I feel like we are on a better track to sorting out the symptoms, the source of dis-ease and begin the arduous task of making a correct diagnosis, prognosis and treatment.  Not only for Spencer but I tackle my own kidney, liver and pelvis full of growths and stones.  Shelbie has decided to start the seizure medication on Monday...so that will be interesting to see what, if any effect it has on her quality of life. 

Earlier in the week, I heard someone share a thought, that the system of  healthcare we have evolved into, is meant to work for people who are average and passive.  The kind of people who are willing to sit around, take what a doctor says at face value, comply with scripts of medication that most often  never get close to the root of the issue, just cover up the symptoms like a giant band aid.

I can see why I have had so many problems this year with some of our doctors- we aren't the status quo.  We are too much work.  We require someone to stop and reassess everything they know about medicine.   Dyskeratosis Congenita requires a doctor to pause their busy, back to back schedules, take a step to the side and treat a person, rather than a symptom or an average population.

This kind of care is rare these days and it requires work on both sides...the patient and the provider.  I'm still not certain how to go about the coming weeks.  I wish that I could somehow get all of our doctors in a room and educate them on what it's like to be a caregiver of someone with a rare and chronic condition.  I wish I could help them see that an educated patient/caregiver is a vital part of a sustainable healthcare system.

I will try to write daily as we journey through these uncharted waters of liver and pancreas disease.  My responsibilities as a caregiver are getting more involved and complicated as Shelbie can no longer drive.  The last thing I want to do is make her feel like she is a burden so, I drop whatever I'm doing to help her feel like I have all the time in the world to get her to photo shoots, appointments or run her errands.  I am trying to find a better way of working, different hours while people are sleeping so I can stay caught up.  I'm really not sure what that is going to look like.  This week, I worked 65 hours and  nearly 30 of those hours happened over two short days.  I guess you could say these adjustments aren't going so well.

It's all part of the falling apart I guess...we will create something new for our lives and called it normal I guess.  In all the work I have, the medical trips, I am still fighting with insurance companies and my Wasband.  I pray for patience and boy, what amazing opportunities for patience have I been given!


Wednesday, January 24, 2018

Mamma Bear

I've been letting things ride with the GI department at the University of Utah after losing our GI doc.  I was hoping they would step up and do the right thing without me having to create waves.  It seemed like the Doc they gave us temporarily was going to hang in there with us but as of yesterday, that is clearly not the case. 

They did find us another GI doc but at a satellite clinic 45 minutes away from the hospital.  How ridiculous.  I've worked way too hard to get our team of doctors all in one place to have one 45 minutes away.  There are many occasions when one kid will be at Pulmonology while another or two are at Cardiology and GI.  All the clinics are on the same floor of the hospital and I can bounce between them all if needed.  I can't do that 45 minutes away and it just means more wasted time on clinic days. I'm not settling for this, but I am also too tired to keep fighting.

Sadly, they won't even deal with me, they keep calling Spencer directly and he immediately calls me..."Mom, the hospital called and they said..." he is trying to work, trying to manage his failing health and he really doesn't want them to keep calling him but they refuse to deal with me, even though Spencer signed the release of information.  Anyways, I see some enemies in my very near future.

We have three more days of peace and quiet before the insanity of February hits and our endless appointments...Starting Monday, I see my kidney doc and I just know that is going to lead to numerous follow up appointments.  I received the written report from my CT Scan the end of last week and they found a suspicious spot on my liver and and my pelvis has multiple calcified stones inside the veins, similar to kidney stones.  There were too many for the Radiologist to count.  This doesn't really sound good to me.  I think I'm just going to need to find me an Internist because this has gone beyond a simple UTI they keep telling me I have, yet antibiotics has yet to change my labs.

Tuesday, Shelbie follows up on her broken finger...Anyone want to bet on the outcome of that?  I'm guessing it's still broken, probably no change but at the same time, I'm hoping to be surprised. 

Wednesday and Thursday we are in Salt Lake and there weekly, all the way into March! Ugh.

So, that's where we are at.  I know in my soul that we are in for some strange twists in our story over the next few weeks.  It has me a little anxious. I wish I could hire someone to start fighting these battles for me.

Saturday, January 20, 2018

Me

Steve Jobs said, "You cannot connect the dots looking forward; you can only connect them looking backwards so you have to trust that the dots will somehow connect in the future."

I have had this draw to the past lately.  I'm not sure if I'm trying to understand all the dots in my life or trying to find hope that somehow, there is meaning to what we are going through now.  I look at these pictures and so many words and wonders fill my mind. 

Here's a little walk through memory lane... 

This was me as a chunky one year old hanging out on my grandma's sofa.  I lived with her shortly after I was born and for some time, because my mom had been diagnosed with  Non Hodgkin Lymphoma, right after I was born.  She was given just months to live and I was not an easy baby to care for when you are paralyzed and fighting cancer with two other littles under foot. 

Oh...the metal bars were not part of some 1960's high chair, that was my hip brace.  I was born with a congenital hip defect.  Today, it would be called Hip Dysplasia.  My hip socket didn't cover the ball of my hip so that made for useless legs.  As luck would have it, my parents were told I would likely never walk, nor would I bear children. 

When people say to me, "The problems just never stop do they?"  They have no idea how true that is.  I was born into the world of chronic illness.  Almost as if this is certainly where I am suppose to be. 

 I found these pictures of me in my grandma's basement a few years ago so naturally, I stole them.  They were in a dusty box and she was being prepared to be moved to an assisted living home...so Carpe Diem.  Almost 4 years old and I look at those eyes!  I love those smiling eyes, the joy, the innocence, so tender, so pure, unaware and unassuming. 

Oh to be so fierce... though she's not very convincing.  This picture reminds me that you can be brave and afraid at the same time and that can be okay too.

By the time I reached the ripe old age of 10, this little girl was already gone.  I began perfecting the art of disappearing.  In 6 short years, I learned that life was hard and people were mean and haystacks in the field were my sanctuary and dogs were my best friends.  School brought with it relentless bullying and long bus rides.  The only words I remember uttering at school during recess were..."Stop, or I'll get my sister!"  If I didn't say it, I would hear someone else say, "Go get her sister!"  Ha ha...I was a first class wimp!  I hated fighting and contention, I still do.  I will walk away from a fight of any nature. My sister wasn't a bully by any means but the kids seemed to know that she meant business and somehow, those were the magic words.  She was pretty popular and older than me and was my great protector through elementary school.

my brother Chad, my mom and me with Charlie and my treasured necklace- Skinny Dip
 

That year, all I wanted for Christmas was a ventriloquist doll.  A Charlie Mcarthy doll like the one I had seen on an Edger Bergen show.  Charlie was famous for his double meaning.  That was his gig.  He would say one thing, but meant something else.  Looking back, this was a dot to connect.  I was learning the hard way that people were all about saying one thing but meaning another or worse, doing something different than what they said, or appeared to be.  I practiced for hours how to speak without moving my lips, to say one thing, while saying nothing at all.  I know my parents would probably never admit it but I was their hardest kid.  Everyone else seemed to have a voice and use it. Even now, I would rather write my words than speak them.

One of my other prized possessions was a necklace my Grandpa F. gave me.  He always called me his Skinny Dip because I was so thin.  That necklace, I kept around Charlie's neck, the two things that came to define my world that year.

There were redeeming moments in my life, fence lines I rested upon on the outskirts of a world where I didn't think I fit.  I did end up with that one best friend everyone hopes to find.  Dana.  It was Dana who lived in a hospital and where I learned to accept what life was like there.  It's where I first experienced the holiness in trials.  She taught me that there was kindness in the world and she showed me kindness and love and acceptance.  She saw me as someone who had value, not because of what I could do for her but just because I was me.  There were only a handful or less of people I feel that safe and secure with- they have been few and far between, the ones who stay through the thick and thin.

And then came marriage...and then hard...and then harder...and love became something so hard to define and harder to accept when it wasn't there because I had grown to expect it and need it, but through it all, I somehow ended up with the most loving, perfect children a mother like me could hope to have.  I look back at that first picture of little unsuspecting me and I can't believe where I have been and how I got here and I have learned so much and grown exponentially.  It's somewhat of a miracle really!

Shelbie-5 Sam 2 months and Spencer-3
 Life has been merciless and harsh and many times, we could have allowed it to overtake us and drag us down into bitterness but through it all, we hung on for dear life, we clung to each other as if our lives depended on it...and in a way, they do.  We depend fiercely on each other. There are no three people I would rather journey with...the biggest dots of this tangled up life.






Friday, January 19, 2018

Cats don't always land on their feet

For my whole life, I was told, and believed, that cats always land on their feet.  I had no good reason to not believe this, especially when people would demonstrate this fact by throwing the nearest cat in the air and we would watch them land on their feet, but...I'm going to tell you otherwise.

A couple of afternoons ago, I was coming out of a medical plaza and the parking lot exits onto a frontage road beside the highway.  I was at the stop sign, waiting to turn right onto the frontage road.  It was late in the afternoon and the sun was hanging low.  I could see, not far off, a large truck coming down the frontage road.  He was clipping along at a good pace.  Just as he approached the intersection where I sat, something flew out of the bed of his truck!

Things happen fast in reality, but in your head it can really be quite slow.  I sat, staring at the thing now airborne, trying to determine if it was a plastic bag, but it seemed to have too much weight to be a bag, I thought maybe a jacket or some article of clothing and as I wondered of all the things it could be, I realized it was a cat!!

I'm not a huge fan of cats but this little guy stole my heart, as I saw his little front paws stretched out as if he was trying to catch his ride.  I had so much anxiety as I knew I would be watching this creature's demise right in front of my eyes!  I'm guessing at his greatest height he was about 25' in the air.  I'm sure he was feeling a bit anxious about his situation as well.  I don't think he had a lot of time to panic between the second he flew out of the truck and the next when he landed on his side, on the front of my car!  From there, he bounced twice across the road and landed on the edge of the ditch.

For another second, he laid there lifeless and then like a Jack in the Box, sprung to his feet and started darting all over the place.  He hit his head on a fence post then took off in a frenzied run across the field. 

I was still in shock at what I had witnessed!  I took off to catch up to the truck who was stopped at a 4 way stop.  I rolled down my window, while honking.  His kid rolled down the window and I said, "Hey, a cat just flew out of your truck bed!"
With utter horror on his face, he grabbed his cheeks and said, "Are you kidding me right now?"
"No!  He's alive."
"Was he a little grey cat? White under his chin and the tips of his ears?"
I said yes, but honestly, I didn't see if he had white under his chin or ears but I think it was safe to say there were no other flying cats in that moment so I think he got the description right.
Then he said, "Oh it's okay, it's not my cat.  We were just at a friend's house, he must have crawled in the truck.  It's okay.  I don't care."  Then his kid chimed in, "Ya, we don't care."

I've been thinking about that and it's kind of funny.  It was unbelievable to see a cat flying through the air and crash land on my car!  I thought how this is so appropriate to happen to me.  I actually think he was my spirit animal.  I feel like this is how we are getting through life right now.

We are in some unbelievable situations and we never land on our feet but we still manage to pull through, regardless of the impact it makes on us.  We may wander around a little dazed and confused, run into a pole or two but we eventually figure it out!

Ahhh, ya gotta laugh!

I have some big plans for this weekend...mostly just trying to survive, that's all.  Ya know, land on my feet!

Tuesday, January 16, 2018

Long Days Ahead

As is customary around here, it's either feast or famine in just about everything.  We rarely experience a day that isn't full of extremes, there's always too much of one thing or another. 

Today was just too much work.  Here we are after 11 pm and I just got home after being gone since 7:30 this morning.  Back to back appointments this morning in town, then I had a walk through on a job site in Idaho Falls and then off to Pocatello for my part time job there.  On my way home, I stopped in Rigby for a meeting, then Burton for a meeting then here for a meeting and then my night job!  Whew...! 

In between, I got a special treat.  I got to hear Shelbie sing.  The last time Shelbie sang was 4 years ago when she sang the National Anthem for a baseball game in Idaho Falls.

On Thursday of last week, my mother in law passed away- my ex mother in law if we are being particular.   The kids didn't get to spend very much time with her but she make a lot of effort to stay close to my kids.  She lived in Indiana.  My father in law passed away when Shelbie was just 2 months old so she has lived alone for 25 years!

We got off to a rough start, her and I but over time, we came to know and understand each other better.  She lived a very hard life.  Her husband was sick most of their marriage with severe diabetes and a battle with cancer. She had a daughter who was born with Downs Syndrome and passed away as an infant.  My mother in law was no stranger to suffering.  She never worked and she never drove a car.  She relied on him until he died and then she relied on God.  She had an amazing amount of Faith.  She always trusted that things would work out, even when it seemed there was no possible way. 

On Sunday, I had my nieces and nephews over and we spent a great deal of time talking about Grandma G and sharing stories of her life with one another.  It was really fun to reminisce about better times.   I got out the scrapbooks and we looked at pictures of her and each of her grandkids over the years.   At some point in our night, Shelbie decided that she really wanted to be at the funeral so as a surprised, bought herself a plane ticket to Indiana.  Grandma had always talked about having Shelbie sing at her funeral.  She listened to a CD Shelbie made, over and over again, even through the past few years as she lived with dementia, confined to a nursing facility. 

So, Shelbie and her cousins will be leaving tomorrow and Shelbie and her cousin Connor will be singing together, Consider the Lilies.  Tonight, in between work meetings, I met them at the church and we practiced it a few times.  It felt like home, to hear my daughter sing.  She has the most beautiful voice and still perfect pitch.   She doesn't have the lung capacity like she once had but it was still amazing.  I'm sad I won't be there to hear them sing at her funeral.

Also today, I spoke to our Neurologist.  She held her big meeting with a team of neurologists who all went over Shelbie's PET scan.  It showed even more slowing in her brain than they had first thought there was.  Our doctor said they are deeply concerned at how much her scans and clinical picture has advanced.   Shelbie has not been willing to start the epilepsy medication from the summer because of the side effects.  Our doctor was begging and pleading with me to try and convince her to start the medication in an effort to slow the damage from the countless seizures she is having.

I only had a short time to talk to Shelbie tonight and I think I have convinced her to start when she gets home next week.  I was expecting this news. 

For now...one day at a time I guess.

Monday, January 15, 2018

Pacing Sam

It's a strange thing to watch your child live with a pacemaker.  

Last week, Sam had an appointment to have his pacemaker interrogated and check in with our Cardiologist.  Interrogation consists of a guy from Boston Scientific who wheels in his computer that looks partly like a suitcase and a dated gaming system.  They hook Sam up with wires on his arms and legs and hang a large disk around his neck that encircles the pacemaker that still bulges from under his skin.  From there, they play with is heart rate.  With a simple, split second movement, his heart races like he was mid triathlon, yet there he sits beside me but again, in a brief second, it slows back down.  At one point, they shut the pacemaker off altogether to see what happens.  

I sit beside Sam, watching his face that shows no reflection of these changes going on inside of him and I just want to know what he is thinking, how all the thoughts in his head add up.  Sometimes, I think he is doing fine; that the pacemaker has become part of him now.  Mr. Boston Scientific interrupts my wanderings by saying, "Your heart is using the pace maker just over 50% of the time and things look good."  With that, he left the room.   

Our doctor came in a short while later, and reviewed the interrogation and sized the science up to Sam's symptoms.  He had some concern that Sam is experiencing dizziness and stumbling about.  He felt like Sam would benefit from a higher resting heart beat so Mr. Boston Scientific came in and within a 2 second span, Sam's heart was magically at 70 bpm. 

I still can't believe at times, that this is what we do now.  We monkey around with the heart like it's nothing.  It's hard to believe that all this feels almost normal. I didn't think we had it in us. 

70 bpm isn't feeling very good to Sam.  Imagine that your heart is constantly at a steady beat when you are at rest.  Normal people usually have a 10 bpm drop in their heart rate when they sleep, it helps with falling asleep and relaxing.  Sam doesn't get to do this and he is having a rough time adjusting to this higher pace.  In fact, he is asking to have it turned back to 60 pm.  

Spencer is next on the interrogation schedule so maybe, I can take Sam down with me and have his heart readjusted.   In the meantime, he is a little uncomfortable and it's not as easy as it seems.  With each adjustment, it takes a few weeks for his heart to settle down.  For now, his heart is racing and all over the map.  Hopefully, things will be calm for him soon. 

Friday, January 12, 2018

Nephrology

In other news, I have secured an appointment with a Nephrologist but not for another two weeks, in a town nearly two hours away.  If I had to hear one more medical personnel tell me "Let's give it another week." I am going to punch them in the throat but I'll do it like a lady of course. I am done and over peeing blood.  I am done with the freaking pain and no pain relief.  I'm done.  So, I took my health into my own capable hands and made my own referral to a specialist.   

I decided, since many doctors lately don't like dealing with me, I would just start out being offensive instead of blindsiding them with my knowledge and critical thinking skills at the time of our appointment.  There are four doctors at the clinic I chose, so when I was talking to the receptionist, she asked what symptoms I was having and I told her.  She deemed that I needed a doctor sooner than later and suggested the name of the provider with the first opening. 

I responded with a list of questions I rattled off to her.
  • Is he on time or late?  If he's late how late does he run?  I don't care if they are behind but I want to know ahead of time if I'll be sitting more than 20 min. 
  • How does he feel about patients who are educated?
  • How does he feel about educating his patients?
  • Does he play well with others?
  • Does he have any sense of humor?
  • Is he grouchy and uptight?
  • Is he easy to talk to?
  • Does he enjoy a challenge or just want an easy text book case?
She was amused with my line of questioning and assured me that the doctor I will be seeing isn't offended with smart patients and is in fact, Phenomenal.  So, I can't wait to meet Dr. Phenomenal.  


Trying to get providers to send my records for the past year is proving to be a challenge.  It's similar to cracking a padlock on the gates at Fort Knox.  I'm so glad they think my urine results are so precious but seriously!  Give me a break.  I do not have time for their ego inflating games.  One provider, who shall remain nameless, gave me the run around for 15 minutes and I politely said, "But why?  Why are you being difficult?"
"It's just protocol."  She said.
"It's protocol to be difficult?"  I asked.
"Well, we need to make sure that this is for continued care." She replied
"What else would it be for?  I don't need for myself.  I can assure you I see first hand the mess going on inside. These people don't collect urine and crap for fun."  Seriously...what am I missing here?  

IN the meantime, I am miserable and I have one nerve left and at the rate things are going, one kidney left too. 

I was thoroughly amused when one provider suggested I increase my fluids, even after describing in detail how peeing has literally become a part time job!  I'm drinking over 100 ounces of water a day and not just water, lemon juice and apple cider vinegar!  I have a disgusting life right now.  I also traded in my morning English Muffin and scrambled eggs for about 15 supplements! It's called the gel capsule diet, it's going so well!   When I went into the health food store to buy the said supplements, the lady helping me said, "You don't feel good do you?"

"No, I don't." I said.
"Ya, your adrenals are a mess! I can tell.  You look terrible!  Are you stressed?  You need to handle your stress better." 

Of course I do.  Why have I not considered this before now? 

I am living proof of what a life of chronic stress does to a body...

Thursday, January 11, 2018

Story telling

I'm not entirely sure why I was sitting in a dentist chair early this morning.  The text message last week said I needed to show up today, so I did.   I was hoping and praying I wasn't going to feel discomfort at today's appointment, I mean, when was the last time the dentist didn't invade your senses with something foul tasting or uncomfortable?  

As I laid down, the rollers from the back massage making its way along the landscape of knots that framed my spine, the dental assistant was fastening the paper bib around my neck.  Even though it's the standard issue, you feel silly and I think it could use a redesign.  I'm certain they used the same bib some 43 years ago and probably longer.   The sweet assistant, then proceeded to ask about the money I won from the Secret Santa.  It had become the talk of the office from what it sounded like. 

"It's so cool you won that money from the Secret Santa!" She said.

She's not the first person to comment on my winnings.  It seems odd to me to think I 'won' the money. It is even more strange to me when I think that other people think I 'won' the money.  I didn't even know I was in a contest.
Her excitement for me and all that money was heartwarming but left me panicking to find something equally warm and fuzzy to say next, because she wanted to know how I won?  What I spent the money on?  So many stories came to mind.  Fictional, Neverland kind of stories I could tell about how we stumbled upon such a great and rewarding contest; maybe award winning essays I fashioned?  My brain is tired and I suddenly felt exhausted trying to navigate this conversation and Peter Pan my way through this story because that's what I do best.  I have become really quite good at refusing to own up to the chaos of our life.  I've made it an art.
But...I couldn't make myself do it. 

I didn't want to create the most awkward moment of her sweet life, or mine but that's what happened next, actually. 

"I didn't win that money.  I was chosen by a generous guy who calls himself Santa who thought my story was sad because I am a train wreck and I have three kids who were born with a fatal, genetic disease and they aren't doing very well right now.  So, I lucked out I guess, for having a crappy life.  As for the money, I spread it out among the bill collectors...a little hush money."  

I can not just keep my sarcasm to myself, and I love run on sentences...I'm way too tired to punctuate anything...but truly, that is what I did with the money and I was hoping a little dark humor would create an escape for the silence that was surely rendered in that moment.  

So, the morning was a bit of a bust.  I didn't even get to subdue the anxiety with a little happy gas.  It was basically an uneventful visit, minus the $1000 dental bill coming my way soon. Whoop Di Do!


Wednesday, January 10, 2018

Shout out to Nigeria

One thing you may not know about blogging is, you get a lot of spam!  You get a lot of traffic that can not be justified.  For example...This week, I acquired over 1000 new friends from Nigeria, in addition to my closest 3000 readers in Russia.  I had no idea 1000 people in Nigeria had such an interest in our family and Dyskeratosis Congenita but apparently so. 

Yesterday when I asked for prayers, I'm certain these new 4000 friends or so answered my plea and things should start turning around soon.

Probably not, actually, because today, they all left my blog.  You know your life is more than even strangers can stand, when the hackers and spammers run away from you!  We have our own built in internet security, forget McAfee!  We've got me!  My life sucks the fun out of even strangers lives, I mean that's great! 

These hackers are notorious for blog stealing and identity theft, but they read one entry on this blog and they fled.  So, if nothing else, there's that.  I probably don't have to worry too much about someone stealing my blog or wanting to be me...although there has been a renegade or two in the past who still thought my life was better than their's. 

So, we'll see.  I'm sure sad to see my friends from Nigeria and Russia just leave me high and dry like that.  I thought we had something special going on.   Good friends are hard to come by!  The going gets tough and they are...

Peace OUT!!

Tuesday, January 9, 2018

Tough

I could feel the winds of change sometime last year, when I kept waiting for the bounce back from an overwhelming set of problems that seemed to hit at once.  I never got the bounce I had come to count on, even expect.  I could feel in my bones, that things were getting harder.  Still, I kept telling myself, "Don't worry.  It will all feel back to normal soon."  

I'm waiting...for normal.  Even an old normal that was still very dysfunctional and hard would be lovely! 

At the grocery store early this morning, I ran into someone who made their semi annual inquiry into the kids and such, not because they don't care, it's just that we only run into each other in the pasta aisle once or twice a year.  I gave the quick run down because I know she cares, but she was clearly overwhelmed with just the events of the past month...she said, "I don't know how you keep going.  I couldn't do what you do."

Usually, I shrug off comments like that.  I haven't found on the Contract of Mortality that there is a place to 'Opt out' and I definitely don't think there's a 'Return Policy' in place for trials that don't seem to 'fit' just right.   If I could, I would be sending these trials back.  Somehow, we ended up with duplicates...the kind of trials that spread your faith so thin, you even wonder if you have any faith at all.  We have too many trials that are short on answers and then there are the trials that are without a doubt, out of style and not in line with the current trends of Joy and Contentment.  Of course, I can't leave out the trials that just plain suck!  We have a lot of those too.  

Basically, these trials are feeling more like clutter than anything that is suppose to leave us better than the way they found us.  

Ugh...You know how people choose a new word for the year...Why choose one word when you can choose 4 good words for the year?   UGH!  GAH!  BLAH! DONE!  (insert a good eye roll)

Anyways, I have a point.  Here's my point. 


In answer to all the people who think I'm this amazing soul who God can trust with the hardest trials...which is nonsense...I'm just a normal weakling who is being toughened up with the battles of life.  I don't yet feel as tough as these hard battles need me to be but I suppose we will continue to rise the best we can to these occasions to prove ourselves but believe me, that in itself, is getting harder each day. 

If you happen to have some extra favors with the Lord, we could use a few whispered prayers sent in the direction of Heaven.  Mostly because all this feels like more than enough.  I made my 100th trip to the doctor today and my kidney issues are worsening even after 2 weeks on antibiotics.  If I don't start feeling better, this family is sunk.   I'm starting to have increasing worry that I have a serious problem that is not going to end well.  I haven't seen that anyone else is in line to take care of the upcoming problems with the kids...so it's all on me and I really need to be on top of my game, not stumbling along, barely able to live myself. 

Okay...well, another awesome, uplifting post from yours truly. 

Carry on fellow soldiers.

Sunday, January 7, 2018

Moving Day and other events

It's that dreadful time of year when Sam thinks he needs to spread his wings and flee the nest, and that he did!  He and his cousin were able to sell their contracts from one housing place to rent at the  newest complex in town.  It's a two story unit and he is in Heaven!  The managers are really excited for them to be there too.  One of the managers lives right across the street from me which is kind of cool.  They are paying much less than the one they had and it's way nicer.  As you can see, the apartment is extremely bright!  A large sliding glass door to let the morning sun in, a small balcony and then the brightest lights you've seen throughout the apartment.   They are well designed and I'm happy for him.  





 Sam's pretty apprehensive about starting school again.  We have all sorts of support in place through the disability office, which has been amazing, but he is very much overwhelmed with it all.  I hope once he gets through his first week, he will feel better about things.   From a health standpoint, I'm a little nervous.  It seems as soon as he gets on campus, he picks up a million viruses and gets sick immediately.  Here's hoping that is not the case.

This was a strange thing that happened to me...a dear, dear friend from a very long time ago, about 30 years ago, found me!   It came from out of the blue.  He was on Facebook and for some odd reason, the video from the Secret Santa was on his feed so he looked at it and was shocked to see that it was me!  He added me as a friend on FB and we've been communicating over email mostly until this weekend when I was able to call him.  We talked for nearly 3 hours!  It felt nothing like 30 years has passed us by.  He only has 5 FB friends, none of them common to any of my friends so it's almost like he was meant to find that video. 

We had such a close friendship when I was 17,18 and 19.  In fact, I took him to my high school graduation, even though he was quite a bit older than me.  When I was 19, he moved away and I moved to the States.  In a letter he left for me the night he moved, he said if we were meant to be together, our paths would cross again some day.  I really didn't believe that would be possible.  I still can't believe it happened. 

He was only married for a couple of years a long time ago.  He is alone now and was recently diagnosed with a brain tumor and Multiple Sclerosis.  Because of the tumor, he is losing his vision. He can no longer walk but a few steps.  He had to sell his home and move to an apartment.  When he told me that, I was so sad for him.  If I was in a different situation myself, I would move back in a heart beat and take care of him.  It is heartbreaking that he is facing these challenges alone.  We did share a very special friendship.  Even though there is a great distance between us, I know we will remain close from here on out.  It felt good to share all those old memories together this past weekend.  The best Friday night I've had in forever.

Saturday, I spent most of the day making a birthday cake for my nephew's wife.  They have only been married a year so I don't know her well, but she is a sweetheart and we love spending time with her.  I have to say, this is my favorite cake so far.  The flowers are edible!  I made them petal by petal out of a wafer/rice paper.  I hand painted them and then put it all together.  The cake is chocolate with a chocolate ganache between all three layers.  There is a chocolate lattice that encircles the cake.






 I'm grateful for these distractions this weekend even though I should have been working.  Friday, freaked me out quite a bit.  A mother posted on the Dyskeratosis Congenita page about her son who needs a bone marrow transplant and a liver transplant.  She was wondering which one they should do first.  What a horrible decision to face.  As the conversation unfolded, clearly, the number of young men and women in their late teens and 20's with DC are facing liver transplants.  I felt a sinking feeling that we will soon be joining the ranks.  With Sam, his liver  numbers wax and wane...for now, they become elevated for a couple of months but settle back down for a few more months.  His elevated numbers are just slightly above the upper normal limits.  Spencer's numbers are triple!

The fact that his pancreas is suffering, his GI system, his liver, makes me feel like we need to brace for the worst but hope for the best.  Many of these families are traveling to Boston for transplant.  I know we won't have that option unless we can raise the funds and fight our insurance company to let us go out of network...if they will even cover transplant in the first place.  It makes me sick to think about it but I can't think about anything else!  It's got me all up in knots.  The logistics of transplant would be a  nightmare. 

I've had to drive Shelbie everywhere the past month and she is not improving at all like I had hoped she would.  I have missed so much work in order to make that happen so if I have to be gone for an extended period of time, I don't know what we'll do. 

I know...it's too soon to worry yet but it seems to be my strength in life...putting the cart before the horse, counting my chickens...and all that good stuff.  I will continue to fight these feelings but it is hard and taking a toll on my mind. Spencer is not getting any better. 

Here we are, back on the hamster wheel of life, ready for another white knuckle week of who knows what.

Thursday, January 4, 2018

It's hard to say...Part 2

Here I go, doing what I do best...

Being a hypocrite!  I know.  Sorry to disappoint anyone.

Because you know why?  The whole Good or bad, hard to say idea is mostly hard to do.  Easy to say though.  It has a nice way of tumbling off your tongue.  It's catchy.

Here's the deal.  I'm pretty nervous about where things stand with Spence.  I received news on New Years Day that his liver is now in pretty rough shape.  His enzymes are extremely high, triply beyond the highest normal number.  Not just elevated...high.  Sam's liver enzymes have been rising and falling over the past year but never to these extents.  I also learned this week that a poor liver can cause all of Spencer's symptoms.  We've been looking at the wrong organ or answers!  I had no idea.  It stands to reason that when you have GI and malabsorption issues, the first place to look is the small bowel, colon; somewhere along that line.  No one ever thought to look closer at his liver until now.

I didn't want to ruin January 1st for him so planned to wait until Tuesday to tell him.  I didn't have to.  He called me.  The doctor called him.  We are adding a Hepatologist and Liver Clinic to our growing list of Utah trips, this, in addition to our new Endocrinology appointments.  Speaking of Endocrinology, not only is his insulin low but they found his insulin antibodies are elevated.  So, we are looking at pancreas, and liver problems for certain.

It's hard to see your child so sick and suffering so much and not think, 'This is bad'.  I guess it's all part of the 'being human' gig.  It isn't second nature to say, 'Hard to say'.

As I was looking through the liver clinic docs, to find the unfortunate soul who has been assigned to us, I saw our very first GI doc in the line up!  To say I had a mild panic attack would be...an understatement!  The woman who, 22 years ago, first told us Shelbie and Spencer had a rare disease called Shwachman Diamond Syndrome.  The woman who handed me a one page, 'get to know what's going to kill you', information sheet.  The one who said they wouldn't live to see 18.  The one who started treatment, only to back down 9 months later because of a political issue with a hospital, hell bent on being the first to find the gene and we would only muddy their waters of fame...and because of that...all of a sudden, she claimed my kids were normal, completely healthy, "Stop looking for trouble."  Ya, that woman...serving as a liver clinic doc...Oh ya, the same one who performed an intestinal biopsy on Spencer at the tender age of 18 months- without sedation.  She figured restraints would be better.  Ya...I might be harboring a little resentment and bitterness toward that woman.  Interesting how life plays out...Full Circle.  Thankfully, she is not going to be our Liver Doctor!

We saw the Ortho doc Tuesday for Shelbie's finger.  No healing to speak of.  I'm new to the world of bones; I'm better suited to marrow, brain, GI, liver and pancreas issues. It seems a bit extreme that they are seeing little evidence of bone healing on the X-rays.  I'm sure her lack of collagen is to blame but I can't say for sure.  We had a better experience this time.  I was in a better place mentally to deal with this. We didn't wait for hours so it must have been a better day for them too!  Sometimes, it's the little things, added upon little things that I don't do well with. 

I appreciated the PA that we saw, same as last time actually. (I liked him last time too!)  I appreciated his -matter of fact- here's what we're dealing with-spare me the patronizing sugar coated preamble... I really did and I appreciated his humor that was well suited to us.  He was confident when I was not.  I wanted them to just throw a pin in the dumb finger and call it good.  He wisely and patiently explained that while we could do that, why not let her body run it's course.  I agree, I just needed to hear someone confident, tell me that, I guess.   Surgery and infection risk would be pointless, I know.  Shelbie will do 4 more weeks in a splint, that will total 11 weeks with a broken finger.  Sheesh. 

These kids...it's hard to say why they never get a break. 

Wednesday, January 3, 2018

It's hard to say

I heard a woman retell a story of a farmer who responded to everything that happened to him with the phrase, "Good or bad, it's hard to say." When his cow got stuck in the mud, he said, "Good or bad, hard to say."  When his crop failed, he said "Good or bad, hard to say."

As we excel at being human, and with that flawed existence, comes an abundance of judgment.  We judge everything; people, animals, the weather, God...He can never do enough can he? How often do we catch ourselves saying...'Well that was nice but..." Too often if you ask me.

The moment we experience anything...we immediately place our judgments on it.  You wake up to the sun behind a wall of clouds and immediately feel depressed that rain is coming and that probably means gale force winds will come first and that means your hair is going to look crappy all day...

I can think of a few times over the past few months when I successfully lived this idea of waiting to see how it all works out.  The one that sticks out in my head is Sam's pacemaker.  When his surgery was postponed, I immediately jumped to the thought that it was bad news but I quickly corrected my thoughts and took the wait and see approach.  It didn't take long to see that it was actually a good thing, since the pacemaker he was going to receive had been recalled.  Good or bad...hard to say.

It's a really  hard concept to live by.  Try it for one day.  For one day, don't judge anything at face value.  Instead, say, 'Good or bad, hard to say.' then watch what happens.  I really don't know what happens.  I'm guessing things seem to have a way of working out.

Right now, I am watching Spencer's organs slowly deteriorate, literally, right before my eyes.  It's like watching dominoes fall and I am both intrigued and terrified and anxious beyond understanding but I am holding on with fierce effort to this thought- Good or bad, hard to say.

Tuesday, January 2, 2018

Making everything better

Yesterday was a discouraging post.  Probably because right now, we have a discouraging life.

Anyways...so I saw this thing on the internet and the headline read...52 tricks to make everything better!  I thought, 'That's exactly what I need!  It must be meant for me because I really need to make all this better...and fast!'  Here's how I'm going to fix my life, as per the article. (just a few that struck me as especially helpful.)

  • Buy a bomber jacket.  BECAUSE...celebrities, musicians and sports people wear them and it's the thing to do.  I guess that's why 2017 was so hard!  I don't have a bomber jacket so, I'm going to get one. 
  • Upgrade your camping gear.  YES!  That is the key.  My camping gear sucks! Just another reflection of all that is wrong in my life.  I did get a Yeti mug for Christmas and gee, it's awesome.  My diet coke stays so freaking cold!  Every day is way better with a quality diet coke mug.  Yeti...if you are lame and don't know what that is, is a camping brand and they make the greatest coolers too!  If your life sucks, you should start here at least, with a new YETI mug. 
  • Eat your veggies first.  I thought you were suppose to eat dessert first since life is so unpredictable?  Well, this article says eat veggies first so that's what I'm going to start doing.  I'll eat dessert second which won't be bad, it will wash down the remnants of brussel sprouts that leave a healthy film on your tongue. 
  • Go to Spain!  What?  I'm there.  They are suffering in a terrible recession so apparently that's good for me.  It says I can have a high end experience on a poor man's budget. Rooms are only $300 a night.  That's a bargain for sure!  A poor man's bargain! 
  • Buy a better office chair.  I have been thinking about this for sure.  Most days, I sit at my desk and think...If only I had a better chair, I would be happier. 
  • Step up your dating game.  I do need to do this. A man makes everything better, obviously.  I didn't fall into this mostly amazing life without the help of a man.  I just need to find another one that doesn't mind sticking around. The article suggests getting some new perfume and a haircut.  Who knew snatching the perfect man was all about perfume and haircuts?  I'm totally doing this.  Probably if I just even brushed my hair, now and again, they would see me and overlook all this baggage I'm dragging behind me!  I can't wait to go out tonight and see what I can catch! I think there is something to this though because three weeks ago, I was at Walmart on a day when I did actually comb my hair and I was even wearing jeans, not yoga pants and this incredibly handsome man walked passed me and then turned around and said, "You're rocking this look today! Wow!" and then disappeared in the fishing aisle.  I think I will also spend more time in the fly tying aisle at Walmart on the days I look presentable. 
  • Do the Downward Dog in the Himalayas.  I wish I was starting 2017 with this article, now I'm a year behind, at least on making everything better.  I should have time after Spain to get in a few downward dogs in the Himalayas...if I budget my time and poor man's budget right. 
  • Get fitted for running shoes.  It didn't say you had to actually run.  Just get fitted for running shoes.  That sounds easy enough, I mean, if the pay off is making everything else better, why not give it a shot?
  • Practice moderation.  I can see how this might be good.  I did eat an entire 5 lb bag of Swedish Fish once, in about 12 minutes.  It did make for a rough day, more than usual.  I'll try this. 
  • Upgrade your sunglasses!  Now this one makes total sense.  I currently don't own sunglasses which I'm sure is a huge part of my problem! I see everything!  EVERYTHING!  All the flaws and short comings of life.  I see what's coming next.  I see too much, that is clearly the problem.  Sunglasses are similar to Rose Colored glasses only not as bright and rosey.  It's better not to see what's coming at ya.  I think this is really good advice.  I should have thought of this myself.  So easy for such a great pay off to fix everything. 
  • Drink more Gin.  Oh, you didn't hear?!!...It's good for you this year! It's because it's made with Juniper Berry and we all know Juniper Berry helps with arthritis...which I have, joint pain...which I have, lung congestion...which I might have someday, improves digestion...who doesn't want that?  AND it improves liver function!  Gee whiz...my liver has felt sluggish lately.  This might be the best news I've heard all year!  It says that pink Gin is especially helpful and I love the color pink so that seems like a good fit. 
  • Buy a bed in a box.  Apparently, you get better sleep on a mattress that comes stuffed into a small box that UPS drops at your door.  This is a must for me!  I wonder if I could get the same effect just sleeping in a box?  Because I'm on a poor man's budget.  I'll consider this one but won't commit just yet.  I'd like to try some of these other helpful tips first.  
Maybe 2018 won't be so bad after all!  At least now, I have some direction.  Some hope.  Some tried and true ways to make everything better. Whew!

Monday, January 1, 2018

2017...2018 Ready or Not

It's a New Year...Believe it or not, I have been working on this post all week long...

AND...

I GOT NOTHIN' TO SAY!  Well, not entirely true.  I have a lot to say but it may not be especially appropriate for a New Year's post.

New Year's posts are suppose to read something like this:

"2017 was the BEST YEAR EVER!!"🎉
It was such a great year...and then I would proceed to report on all the amazing things I accomplished this year, the places we traveled, the hobbies I excelled at, the weight I lost, how I made it to the gym every day, cleaned up my eating, lost my diet coke habit, found love, made new friends, the kids made the honor roll...

You get it.

I feel like there's a lot of pressure this time of year to be happy, grateful, hopeful and excited about what a new year is going to bring.  In all my planning for this post, I thought that maybe I would write that somewhat fictional piece and dress up everything we've been through this year into something spiffy, spin it around to sound like a tragic story with a happy ending, hardships we sailed through with confidence and hope to spare; like it was nothing and came out better and stronger than ever because that's what trials are suppose to do.

Instead, I've discovered that a new year isn't the 'clean slate' I've been mislead to believe it is.  It's not a fresh start, but I wish it was.  I wish there was a way I could dump all the hurt and worry and fatigue and anxiety and sadness and rejection that 2017 brought, into a deep ditch at the end of the 2017 road.  Then I would turn the corner and feel the warm sun and cool breeze and head down the glittery path of 2018 which I'm sure will lead to greener pastures.

Honestly, the whole thing makes me sad.  I really want to be that person with the 'BEST YEAR EVER' thoughts and some equally hopeful thoughts on what awaits us for 2018.

2017 brought a lot of lessons to be learned and boy we tried to learn them.  We tried hard. We tried so hard, I am exhausted!   It was full of white knuckle and near death and even real death experiences that left me utterly in awe of what our Father in Heaven can require of his children.  Without a doubt, each and every trial did bring with it an abundance of tender mercies and holy moments that got me through but each event changed me just a bit.

In some ways, I can see that I am stronger than I was at the beginning of the year.  My faith in God has grown some, I've had moments when I had more hope than I thought was possible.  Paradoxically, I have felt what it's like to despair, to hope less, to wonder at the peculiar timing of God and even question what he is doing with us.

So, this new year is merely an accumulation of experiences and all the feelings that accompanied those- for good or for bad.  Realistically, this is not going to be an easy year.  I have a very, very sick boy on my hands.  I have a daughter who is struggling to function the past two weeks with a brain that can't stop seizing.  And yet another who is lost and alone and desperate to end the struggle he faces.

I guess I can't just end this post there...I have dared to think of some things I would like to see this year.  I would like to learn some new things.  I've been toying with the idea of  going back to school.  I would like to move and have been actively engaging in that process.  I would like to figure out how to deal more gracefully with these trials.  I would like to get some rest this year and read more and be less lonely and more helpful...I should probably stop right here the list of fixing my deficits could go on and on.

Well, here we are...the first day of 365.  Happy New Years.

The Rise and Fall

Sometimes, I think if I were to write a book about my life, it would be called, The Rise and Fall. There are times and seasons when we hav...