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Showing posts from April, 2018

Drenched in Suffering

Sometime last Fall, when my boys' heart's were failing them, I was asked to help a single mother that lived nearby.  I knew bits and pieces of her tragic story and when I say tragic, I really mean horrific.   A marriage of horror you have probably only read about.  A dissolution of a marriage that remains caught up in legalities and other entities, warring for some of the sweetest children you could meet.  I dragged my feet about getting involved.  It seemed like an overwhelming situation and I was caught up in my own feelings of overwhelm.

I felt like my plane was going down and I was struggling to find my oxygen mask that was suppose to magically dangle in front of me.  Until I had that securely attached, I didn't feel like there was room or resources for me to get involved.  I did small, insignificant, physical tasks around her house; things that took an hour or less so I could get back to my own awful stories of hardship.

Selfish...I know.  I knew that then and I know …

No news is bad news

Well, no call from oncology.

I am feeling everything you can imagine...angry, frustrated, annoyed, bugged, sad, worried, anxious.

Basically, I feel like a train wreck and look even worse.  Shelbie is barely holding herself together and I am little to no help for her.  I can't even believe we have to go through the weekend waiting around for bad news or worse news...good news is not even an option.

In other news, I am seeing my Nephrologist on Monday and I forgot I was suppose to get lab work done a week ago.  They called to tell me they had not received any labs.  So, I hustled up to get that done.  While I was at the hospital, I picked up my labs and radiology reports from two weeks ago that the Rheumatologist ordered. I have no trace of autoimmune disease, no antibodies to Rheumatoid arthritis, Lupus or any of the other big ones.   I don't get how that happens because I have 5 years of lab work that shows otherwise and a mountain of joint pain and disintegrating joints.

My k…

Meeting of the minds

I received an email from our Hematologist/Oncologist last night.  He is concerned about the PET scan results on both kids.  He is having a meeting with several of his oncology colleagues to discuss Shelbie and Spencer's case on Friday morning.  He did not elaborate.  He said he will call me on Friday afternoon.  That means, I'm cancelling my day on Friday.  There is no way I will be able to focus, knowing our future could take a drastic turn.

It's easy to come to all sorts of conclusions about this...The first thing that came to my mind is that, of course, he is concerned, otherwise he would just say, "Don't worry.  We'll see you for the yearly check up next January."  The fact that he is calling in the troops to help him decipher the situation is unnerving at best.

To say the least, Shelbie is not handling the news well.  It is more upsetting to see her giving up and terrified of dying than just about any other thing I could face.  Spencer doesn't kn…

It's A Wrap

One minute, you have a beautiful, 2016 Nissan Altima and in a split second event, you don't.   The car has been deemed a complete loss so that's the end of that. 

Now that I have had time to process it, I guess it really was the best outcome for us.  This car was a lease and that was working out fine when Shelbie drove it because she used it just around town, so she was able to keep the miles low and in check.  When Spencer started driving it, he racked up the miles driving from Provo to Salt Lake for weekly hospital visits and then all around the Salt Lake Valley for work, so by the time we returned the car a year from now, we would have been well over the allotted miles.  Someone had scraped up her bumper in a parking lot and we were waiting to fix that until just before we returned the car to the lease company, as well as replace the windshield...so, in the end, this saved us in some huge fees and penalties, even after I pay the deductible.

Spencer's injuries will mend …

Just Because

Have you ever wondered what it would be like if car insurance companies behaved the same way health insurance companies do?  Think about it, we get better treatment for our cars than our bodies.  How is this even possible?

Unfortunately, just because we've been living on easy street the past, oh, I don't how long, months at least, it was time for a little hiccup a little trial of sorts.  We've been spoiled, just coasting and such.  Things have been going so well, it's to be expected that we had to have something go wrong.  Everyone has something right?  Why should we be exempt?  We are such slackers. I've just been waiting for the shoe to drop.

Spencer was in a significant accident tonight...in Shelbie's car.  Air bags deployed, hyper extending his fingers on both hands, possibly breaking one thumb at least,  whip lash, and impact to his pace maker again!! The last thing the cardiologist said after the snowmobile accident...no more accidents!

He called me at 5 …

I'm fine.

In my parked car this afternoon, I sat alone and listened for the birds who finally found their way home via Spring.Shelbie is off in the woods somewhere, capturing memories for a young, growing family so it seemed a perfect moment to be still. If you know me, you’ll know I don’t sit and I’m never still. I don’t have time to let a quiet moment break into the vaulted thoughts of worry and fear that I have so systematically shelved, in my very worn out head.In so many ways, I’ve been deeply detached from the impact of my unique circumstances of testing.
I always imagined a simple life for myself.  A quiet life.  A husband, a few kids, a family tethered securely to a well worn porch swing where everything was right with my little unnoticed, simple life. Sitting here, as the birds chatter back and forth, I am cursed to be alone, with nothing to do. I am profoundly aware that I am tired of living life on the edge of ‘We will be fine’, because I just don’t know how much longer I can be fin…

Meh!

Today was another big day.   I had an early morning appointment to get some ultrasounds of my joints and I also received a big ole steroid shot in my hips.  It wasn't good news.  There's just no way to sugar coat this.  Every. Single. Joint in both of my hands is deteriorating.  I have severe synovial hypertophy.  It's in my hands and my left wrist and my right shoulder.  I don't know exactly what is causing it or how they will treat it until the end of June...My doctor is leaving the country for 6 weeks!  
She did say that I need to stop overusing my hands or I will be facing complete disability in a very short amount of time.  
UGH>...Everything I do involves my hands...from playing the organ every week at the temple or church, to my jobs, cake decorating, flower arranging...everything.  I'm a little worried and upset with the news but of course, as is customary, trying to keep it under wraps so I don't upset the kids.
She said it's so severe that I h…

The waiting game

This has been an epic week...no trips to Salt Lake.

 It feels weird actually.  I'm itching for a long road trip when I can leave late at night, after having only a few short hours of sleep and chew caffeinated  gum like there's no tomorrow. 

Just kidding...I'm sick of my car.

No PET scan results in yet.  I imagine by next week. 

This week is not without a barrage of medical stuff to do.  Monday, I spent over two hours at the hospital getting all the blood work, scans and x-rays I needed that I was shamed out of getting last week at the Rheumatologist's office.  This morning, I get to have an injection in my back that, fingers crossed, will improve the quality of my life some.  I can't even imagine what it would feel like to be pain free, even if for one day.  Because my kidneys are screwed up, I've been avoiding Ibuprofen or Tylenol so life has been extra miserable in the pain department.

Also today, Shelbie gets her splint off and we get to see how horrible he…

Miracles and Mayhem

Today was a day of lessons learned. 

An adventure with God.

A culmination of every effort of faith I have ever gathered.

We left our hotel in a rush early this morning, got stuck in massive traffic and not just morning traffic in Salt Lake but there was some crazy person driving the wrong way down the freeway so things were moving extra slow in an effort to keep everyone safe.  It was pouring rain, as if we were in the middle of a car wash.  It took a solid hour to get from our hotel to the hospital which normally would have been a 20 minute drive. 

There was no sitting around once we arrived and they whisked Spencer off for his two hour PET scan.  Shelbie, Sam and I went back to the car with our plan to show up in the ER at the University Hospital so that they would call a Nephrologist on call and Sam could get the help his kidneys need. 

When we got to the car, I suggested we stop for a minute to pray.  I prayed that I would know the steps I needed to take in order to get Sam the ca…

Stuff you can't make up

I know most of my life seems made up because really...it has become a bit ridiculous but today was the tops in crazy.

I've been waffling about canceling my appointment today to see my Rheumatologist.  I've felt like it's a waste of time and resources, especially since office protocol means I don't even get to see the doctor until the end of JUNE!!  Yep.  I saw a PA today and he just does an assessment, listens to me whine and complain but he isn't allowed to do anything other than just that, even though I'm quite certain he could do more intellectually.   The second appointment is with a different PA and they do more examines and then a few weeks later, you see the doctor. 

This is probably a wonderful way of doing things if all you deal with is arthritis or whatever.  I don't have time for this kind of circus side show, but, I didn't cancel.  In fact, they called and asked if I could come in 2 hours earlier and I said, "If I come in and change my …

Ball of Stress

Stress kills...I'm convinced of that more than ever.  That means, at the rate things are going, I have about 3 weeks left of life. 

It's been a stressful few days. 

I have been trying so hard, harder than I have ever tried before to just leave things in God's hands.  That's hard work.  I'm telling you.  Hard. Work.

It's always a struggle to balance the act of a gracious surrender with the overwhelming feelings of anxiety and worry.  I don't do this well, but I try. 

I have often joked that if jumping to conclusions was an Olympic Sport, I will have earned me a few gold medals.   This whole kidney failure, bone marrow biopsy, small bowel cancer theory, broken bones and the whole 9 yards is wearing on me.   I've tried to do what I can to get Sam an appointment with a Nephrologist in Utah but I have been running into incompetent people, forgetful people and people who won't break protocol.  It's so frustrating.

I finally called our family doc again…

Surgery and Kidney Updates

Shelbie had her surgery on Friday.  Everything went well.

Unfortunately, the surgeon was unable to save the joints in her finger and he ended up having to fuse it.  She went too long without the bone in the right place and he didn't have enough healthy tissue to make a pin work.  So, from top to bottom of the second joint, is a screw. 

He said it was tricky because her fingers are so tiny and he used the smallest screw they had and it just barely worked.  She was a little traumatized because she woke up during the procedure to the sound of the drill.  When they took me back to the recovery room she was sobbing and pretty upset that she had woken up and that she won't be able to bend her finger anymore.  It seems like such an inconsequential body part but the pinky really does account for most of your grip.

She has been handling the pain very well!! I've been so surprised in fact.  She is having to take some pain meds but for the most part, it's totally manageable.  To…

All Things Difficult

I've been MIA around here.  My life just got exponentially more difficult and worrisome. 

Sunday, Sam seemed really tired but okay.   In the late afternoon, he came to me and said he was having some extreme pain.  We had a house full of cousins and friends so I gave him some Advil and figured things would get better.  They didn't and he ended up in the ER Sunday/Monday.  IT was a bit of a joke in the ER.  We got our favored doc actually but he was not on his game...too many Easter Eggs I guess.  He didn't do an exam, didn't order blood work, did nothing but shrug us off.  So, it was a wasted visit.

After just a couple of hours of sleep,  I was able to get him to a Urologist in the city.  We rushed to get there in time only to find out he wasn't in our Network.  In fact, there are no Urologists in our Network within 2 hours of here but I knew I had no choice so that will be coming 100% out of pocket.   They diagnosed him with Epididymitis, and an infection.  They pu…