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Showing posts from 2018

Advocating

Taking care of loved ones with chronic and rare conditions is harder than I ever imagined it could be and each appointment we go to, seems to get harder.   Medicine is not like it was 20 years ago.  It's not even what it was like 5 years ago. 

Somehow, it's morphed into an unexpected profession that is hard to count on.  No matter how much I hope and wish it was different, I spend days after being disappointed in doctors.  It seems its becoming the norm, not the exception. 

Today was liver clinic.  Nice guy mostly but was unprepared.  Hadn't read anything about Spencer and his history; had no idea Spencer had a genetic disease and obviously, had never heard of it.  He did the one thing I absolutely have zero patience for...he was a textbook doctor.  He refused to consider that Spencer is not your normal, run of the mill, 23 year old kid.  He tried every possible angle to find a 'normal' reason for Spencer's liver problems.
       Do you take a lot of Tylenol?  …

Endocrinology

I had an epiphany today on the drive to Salt Lake.  Driving is when I have the most time to clear out space in my head to think.

I think I've said it before, that everything happens for a reason and for our good.  I don't always see the reason and purpose for things, especially lately.  Today, though, it seemed clear. 

I've been disappointed, and angry that I spent so much money on a CT scan that didn't even image the very organ that we need imaging of.  It seemed to be a bust but the more I thought about that, the more I think it might have been a blessing in disguise.  It's kind of a big deal that all the contrast Spencer had to drink in preparation for the test never left his stomach.  Not one bit.  It's a liquid and it didn't empty from his stomach.  That is a kind of a big deal.  A big serious deal. 

Our GI doctor has always been hunting an inflammatory process like Crohns or Colitis to explain his weight loss and other GI symptoms.  Never has anyone c…

CT Scan Results

I got the results of Spencer's CT Scan from last week.

Imagine my surprise to read that the contrast he spent an hour drinking after having fasted for 12, never left his stomach!  So, the test was a bust.  They could not even image his small bowel. 

It's been a pretty rough afternoon since seeing that.  They did note that he has several enlarged lymph nodes in his abdomen so that would indicate a major event happening- infection, inflammation; something to jack up his immune system.  He's had some large lymph nodes under his arms as well for the past three weeks so this kind of fits with what little they did find.

The night after Spencer's test, he got incredibly sick with non stop vomiting.  I'm wondering now if the reason why he got so sick was because the contrast never moved through his system.  That's so strange.  When I called the after hours/on call doc, aside from being no help whatsoever, thought it was strange he was so sick from the test.  Something …

Joke of the Day

So, three doctors walk in to the bar; a Gastrointerologist, a Pulmonologist and a Neurologist.  A man at the bar collapses.  Who starts CPR?

The Bartender.  CPR wasn't any of the Doctor's specialty.

Actually, this is not a joke.  This is our new reality.  The GI department has successfully backed us into a corner and I don't see a way out.  So, do I fight or back down?  That is the million dollar question.

The Director of the GI department passed us off to a scheduler.  She called today.  She sounded very helpful and had an array of choices for us to chose a new GI from.

A.  We could become part of the Fellows program and get a new GI doctor every 6 months.  "Don't worry," She said, "They have their White Coats but they aren't specialized in GI yet.
B.   We could have a Nurse Practitioner or Physician Assistant. 
C.   A General GI Doc but the ones they are offering to us really only prefer upper GI problems.

What kind of crappy set of choices is this…

Chasing the Light

The last couple of nights on my way to work, the sunset has been beautiful and brilliant, even breathtaking, though a phone camera hardly captures the beauty the eye can see.  

Last night, it was a little later in the day and the sun was settling down and yawning its light across the darkened sky, kissing the day goodbye.  Still so beautiful with the dark clouds leaning into the light.  In fact, as I drove, I thought how even the dark clouds looked beautiful in it's own right. 

I guess this week is all about light and dark and clouds, and dread...
I've been living my life as though everything that has happened over the past few, ridiculous months has been so shocking and insanely strange.  And it is! Without a doubt, our life is shocking.  But is it really?
In terms of Dyskeratosis Congenita, we probably have it easier than some families I know but harder than a few others.  In terms of a life we all deem to be 'normal', ours could be considered more difficult.  And aga…

Ancient Chinese Secrets

In all my spare time, I've been hitting the books on how to slow down the kidney disease train.  It seems that a future of dialysis is a great motivator.  I absolutely don't have time for the kidney biopsy or cystoscope, so all I can do, is all I can do. 

I have a strong feeling that I can make a difference with food until I can get proper treatment.  There was a time in the history of man, that food was the medicine they used to treat disease.  Food comes with their own healing cells. Now I think food actually causes disease, at least the salty, processed variety.

I am pretty sure that my high blood pressure and high cholesterol is contributing to my kidney problems and the Phleboliths/stones in my blood vessels and I'm certain that my high cholesterol is because I am not processing fat and protein correctly because of an unhealthy gut.   I know this because everything I eat causes canker sores and it's impossible that I am all of a sudden allergic to everything!  Wit…

Odds and ends

We aren't missing a beat around here.  The fun times never end.

We had an eventful weekend.  Saturday, I worked my tail off doing construction cleaning all morning.  Came home exhausted but made two loaves of sprouted spelt wheat bread in honor of Operation Save My Kidney- more on my new diet later.  While I was gone, Shelbie did a 3 hour photo shoot with twin newborns and their three siblings.  Thankfully she had a friend helping her out. 

When they were through, Shelbie needed to go to Walmart for some studio items and I was informed I was hosting a Super Bowl party for their cousins so I needed to get fixin's for that.  Not even 10 minutes into our shopping, Shelbie all but collapsed.  I don't know what happened.  I'm not sure if she had a seizure or what but when I looked back to see where she was, she was gripping the shopping cart and tears were streaming down her face and she was unable to walk.  She literally couldn't take a step.  She has neuropathy in her…

Kidney News

Well, curiosity was killing me and I didn't want to wait anymore to get my test results from earlier this week.  I called this morning.

I have kidney disease.  Some of the numbers were 'severely' high.  So, this just sucks.

I have to decide what to do next.  I really have this nagging feeling that I don't want to jump right to the kidney biopsy even though it will tell us in more detail what is happening.   It is such an invasive test and right now, I don't trust my body to heal itself from the test alone. Honestly, I'm in Salt Lake every week from now until Mid March!  I don't have time for surgery right now, let alone any other resources.

So...what to do?

I don't know.  Of course, my doctor wants to go straight to surgery. I'm digging in my heels.

Everything I read tells me I need to decrease stress, eat an anti-inflammatory diet, lose weight and exercise.  I really don't know where to start, it all seems overwhelming.  I would just as soon no…

Cardiology

Today was Cardiology.

We arrived a little early and they were a lot behind schedule so it made for a long wait.  For the first time in 3 years, the large waiting room was nearly packed.  There were very few empty seats and several people in wheelchairs filled the aisles.   They came out to get one guy and as he and the nurse were walking by, the guy said, "Did my doctor die? I think he must have died since I've been sitting here for two hours!" The whole place erupted in snickering as the nurse calmly said, "I'm sure it does feel like that but I assure you he is alive and well.  We've had a busy morning and we sincerely apologize."  I thought she handled it well but that old guy wins the award for funny today.

I love our Cardiologist.  His whole demeanor makes me feel completely confident in him.  He is soft spoken and has kind, gentle eyes that smile.  He is quite serious so I make it my personal challenge to make him laugh before we leave.  Today was …

Quitter

I have to admit, I didn't plan to be a quitter but I am.

I had big plans to have a pity party all week long but I cut it short.  The party only lasted a day.

It started out with a bang.  The guest list was unprecedented,  it was just me, the perfect party pooper!  No uninvited guests showed up or party crashers.  The last thing you want at a pity party is someone with a good attitude.  That's so yesterday!

I took a lot of care in keeping the blinds shut just for ambiance and decorated with black lights and lamps with burnt out bulbs.  I should have taken pictures of the decorations but that would have required too much work.

I read a really good book called, "Why does the Universe hate you?" It reiterated that life sucks and then you die.  There was also a riveting chapter called, "Life is not fair and other surprises." and I listened to some of my favorite songs, Tear Drops on My Guitar by T Swift.  There'll Be Sad Songs; remember that song by Billy Oc…

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 S…

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 celebrat…

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 ge…

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 h…

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 con…

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 ma…

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 …

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 …

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 li…

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 commen…

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 pro…

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&…

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 fe…