Tuesday, October 16, 2018

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 have it together and we rise to whatever the occasion presents.  At other times, we fall hard and fast.  I've experienced each of these moments so many times over the years, especially this year. 

The good thing is, with every fall, there is a rise. 
The good thing is, with every rise, there is a fall...It's all good. 

There are things to be learned on the way up, while on the top of a mountain with a breathtaking view, and on the way down, in the valley, where the water runs cold and clear and carves out a path through the rocks and wildflowers.  In the valley, it's lush and thick with new growth.  On the mountain, the trees are old and wise and the view like nothing else.


I think I'm currently in the valley.  I'm choosing to refer to my recent fall in life as the valley.  Instead of considering all the ways I have fallen short, I'm learning to see how the sun hides between the far reaching trees and casts a shadowy lace along the path.  The ground is soft and the lazy river feeds the moss and trees and it begs you stop trying to climb the slippery slope.  Somehow, we've been conditioned to like the mountaintops more than the valleys.

There are some pretty amazing views from down in the valley.


Thursday, October 11, 2018

Of Bark and Leaves

She calls me Kat.  For two hours, I unplug twice a week, set my work aside and close the door on the world of half-truths and mean people.  I shake off whatever the chaos of the day has been and enter the imagination world of 6 year old, little girl, dreams.  We make up silly songs, talk about mermaids and dancing.  We create and adventure.  We bake cookies and makes messes and we laugh like nothing else matters.  Maybe it's just me, but we leave each other better than we were to start, I think.

Shelbie had a photo shoot during our play time today, so we tagged along, down by the river banks.  The sun was wringing out the last bit of afternoon sun, the clouds chased circles around the sky, and the air was crisp. We sat on our stools of rock, made dinner of bark on plates of leaves. We ran through the trees, made walking sticks and found the river and stumbled on an amazing world that only exists when you play.


I love this time with her and the memories that flood my mind of days so long ago when I played in the haystacks on long summer days by myself, tended the field mice, dressed up the cat and hid in a happy world in the sunflower house, my dad planted.  In her eyes, I see my own kids who were once that small and full of imagination and dreams and it seemed I had all the time in the world to play with them but it all went by too fast!

I thought of this song by Priscilla Ahn...one of my favorites.

I was a little girl alone in my little world

Who dreamed of a little home for me

I played pretend between the trees
And fed my house guests bark and leaves
And laughed in my pretty bed of green
I had a dream

That I could fly from the highest swing

I had a dream
Long walks in the dark through woods grown behind the park

I asked God who I'm supposed to be

The stars smiled down on me
God answered in silent reverie
I said a prayer and fell asleep
I had a dream

That I could fly from the highest tree

I had a dream
Now I'm old and feeling gray

I don't know what's left to say about this life I'm willing to leave

I lived it full and I lived it well
There's many tales I've lived to tell
I'm ready now, I'm ready now
I'm ready now to fly from the highest wing
I had a dream

I still ask God who I'm suppose to be and how I ended up here but on these days, each week when I get to babysit this darling little girl, it doesn't really matter much, I'm where I like to be.  She feels like a gift to me. In these moments, life seems almost bearable. 

Wednesday, October 10, 2018

Updated Appointments





We had a welcomed change of plans in Shelbie's medical drama this week.  Our Neuro-Immunologist sent me a message and she has opened up a morning at the end of the month for her to see Shelbie.  She is on board with starting a trial of extended, high dose steroid or Rituximab, a chemotherapy agent.   I'm not sure if we will have a choice or not but we have not had good results with past efforts of high dose steroids.  The side effects are horrible and hard and the results are short lived.  Rituximab also has hard side effects but they are better managed and the results are more long term.  The downside to Rituximab, is that she will need a port placed, and it will completely kill off what little working immune system Shelbie has left.  She's on plasma infusions so that covers her but it isn't 100% perfect or protective. 

We have a couple of weeks to think it through and get some inspiring thoughts together. 

Last week was a tough week.  I joked on my social media that I just couldn't be emotionally there for Shelbie like I have been in the past and that I should get her an emotional support animal. I ended up getting her an emotional support person- a skeleton of me!  My kids call me Stumps, so that is what we called our new emotional support friend; for those moments when I am emotionally unavailable. 

Honestly, we are goofballs but it got us through a hard week!

I stuck a pin on her bones that says, "Normal People Scare Me"  Ha ha....truth right there!




Tuesday, October 9, 2018

Letting God be God

One of my favorite scholars; spiritual leaders, of all time, is Neil A. Maxwell. In my book of 'buoys'...the words and thoughts I hold on to for dear life, when things aren't making sense or hard with a serving of distress, I read his words...

"While we may be ready to move on, having had enough of a particular learning experience, our continual presence is often needed as part of the learning environment of others."

So, my personal plea is...Could you all please learn your lessons from me so we can all move on from here??!! Please?  Pretty Please? 

UGH.

When it rains, it pours and I don't see any sign of it letting up. 

In my effort to scale back my million jobs, I gave away two nights of office cleaning to my friend.  I figured, just one week ago, that I could still manage financially and it felt like the right thing to do.  Today, I found out that the Government decided to cut Spencer from my health insurance.  We found out after a doctor's appointment yesterday and while trying to fill a prescription, that he was no longer covered- since his birthday last month. 

Today, I had to spend the morning arguing with the Department of Health and Welfare why I wanted him on my policy until he was 26- 2 more years; which I have always understood was the law under Obamacare...The healthcare I love to hate.  They gave me all sorts of flack, raised my premium by nearly $400 and threatened to penalize me when I do my taxes, because they don't believe he qualifies as a 'dependent'.  Honestly, I had zero energy in my soul to argue with them so I just reassured them he did qualify, so they would get off my back because honestly, he needs his heart medication today, and I'm not screwing around with the government while he goes without.

The powers that be neglected to figure in young adults with chronic illness.  For Spencer to get his own insurance, his premium will be $400 minimum with a deductible of thousands!! He is barely making enough money to pay rent because he still hasn't been able to find steady work, just contract work so I will ultimately end up paying double premiums and double deductibles and that is far more than I have the capacity to make.  I'm not sure how to handle this.

I was able to talk to my insurance adjuster about the ridiculous demand for settlement I received over the weekend from the woman Spencer hit in April.  They are offering her $4600.00 which is still $2600 above and beyond chiropractic treatments she milked all summer.  He thinks the worst case will be that they end up paying her $8-10,000.00 which is still insane!!  Either way, it's coming back to bite me.  My premiums have already gone up exponentially.

At times, and without effort at all, I put God in a box. I lose sight of the point to life and as these problems, through no fault of my own, roll over me, I feel doomed.  I can see no way out from under it all.  I recently walked with a friend through an ugly, heart wrenching divorce trial.  It's been months of preparation.  Months of guessing and second guessing the outcomes. Months of listening to her weep for hours about how devastating each setback was to her case.  Months of hearing myself say to her..."Just be patient."  "Let God put his meaning on this."  "It may look bad now but somehow, it will all work for your good!"  Over and over, I told her of my deepest and heartfelt belief in the things I know to my core about God. So, it's really frustrating when I can't hold these truths for myself.

Tonight, I am trying to let God be God; to let him continue to allow these trying times, these discouraging moments that are beginning to feel like life itself and less like moments. I'm trying to watch how it will all come together for my good but even my best effort feels like a drop of sweat in a tumultuous ocean of trial.





Friday, October 5, 2018

Done.

Disclaimer: If you are looking for a feel good read...move on.

This week was everything I thought it would be and more. Hard. It was hard. The hardest week I've had in awhile, which isn't saying much.  Monday and Tuesday were so frustrating and by the time our last appointment of the day happened, I was done being patient and I had somewhat of a come apart with our Pulmonologist.  I am done with the tests.  I've lost track of how many CT Scans we've done to look at the same thing.  About the time when she suggested they do yet another 'walk' test to see what her oxygen saturation rate does, I lost it. 

"You know what? No!! We aren't doing another stupid walk test.  It's a 2 minute walk back and forth down the hospital hall that represents  nothing but a 2 minute walk.  Do you really want to see how my daughter is doing?  Let's all go for lunch down at the mall.  Watch her try to get from the parking garage to the escalators.  Watch how she has to stop every 3 minutes to catch her breath!  Spend the day with us, watch what I have to watch every minute of every day.  Watch how crappy her quality of life is.  Don't keep watching one single number that means absolutely nothing to me."

Of course, I was upset and my voice was shaking and I could feel the Fellow sitting at the computer, staring nervously at me and my face was hot and my heart was racing. 

"I can't do this anymore.  I can't keep chasing this disease.  What I want is for one doctor to be brave enough to just say, 'We can't fix this.'  That's what I want!"

I gotta hand it to this doctor.  She didn't defend herself, or medicine or any of our other doctors.  She simply said, "I know.  I don't live your life so I don't know exactly, but I know you are tired.  I understand you're done.  I don't know that any of us can fix this, it's so rare and complicated but I know we can try something."

That's really all I wanted to hear.  I'm tired beyond words of the run around with test after test.  After my little rant, she did tell me that she had reached out to our Oncologist and Immunologist with a plan and the consensus was it was time to start either a long term, high dose of steroids or chemotherapy.  The preferred treatment for CVID is chemotherapy, especially in light of her lung dysfunction and the fact that the natural course of the disease is lymphoma.   She wanted to get the opinion of our Neuro Immunologist still but chemo is her gold standard as well so I think that is where we are headed.  It still may take a few more weeks before that happens.  Shelbie will need a port because the last 9 months of chemo she had a few years ago destroyed her veins.

I'm upset.  I don't want to watch her go through chemo for a third time. I honestly don't know how much more we can manage.  Every day feels like another day we are drowning.

We got home late Tuesday night.  I was able to work a whopping 7 hours on Wednesday.  We were down again yesterday to meet with the cardiac surgeon and cardiac neurologist.  We practically got killed because of a serious road rage incident on the way down so by the time we got to the hospital, my last nerve was gone.  The short version of our appointments, is that they can't/won't repair the hole in Shelbie's heart and they believe the shunting of her tricuspid valve is due to pressure growing on the right side of her heart because her lungs are diseased.   The cardiac neurologist agreed that they shouldn't attempt to close the hole and she thinks the dose of epilepsy medication is too low so she bumped that up.

It was a long hard day!  We didn't leave the hospital until nearly 6 and met Spencer and his friend for a quick dinner before heading home.  We ended up in a broken elevator with a 5 year old girl.  I have no idea how she ended up alone in an elevator in the bottom of a parking garage but there she was.  We could hear her mom yelling from above..."Elsie, push the help button!  Push the button with the star.  Elsie!!! Can you hear me?"  The little girl was laughing but then her face would get serious and she would say, "I need my mom!" 

We kept yelling through the elevator door that the elevator was broken.  Shelbie was trying to get the mother's cell number but I was already calling Spencer who was up in the restaurant.  He found the family of this little girl and told them that she was with us and safe.  5 minutes later, a whole crew of men from her family came running to her rescue, through the parking garage.  It was pretty cool to see Elsie's dad and 4 Uncles all coming to save her! 

We got home at 11 pm and I had to drop Shelbie off and go to work.  On my way home, I stopped to get the mail.  In the mail was a letter from an Attorney.  I am being sued for $25,000!! The woman who Spencer hit back in April is suing me and my insurance company.  My insurance company has already paid out for her $5000 in medical bills but now she is claiming Psychological damage and loss of enjoyment of life!!  LOSS OF ENJOYMENT OF LIFE???!!! Don't talk to me about loss of enjoyment of life.  The police report says Spencer was going 10-15 mph.  The woman in her report claims Spencer, 'Slammed' into her.  She even wrote a sob story about how it has put stress on her marriage since her husband had to be patient with her because she was now a mean person and he had to drive her around quite a bit.  And, she had to take a week off from studying for her Master's program which caused her to nearly fail her class. 

I am so tired of people;  whiny, crabby, mean people who take advantage of others without any thought but a selfish, dishonest one.  I don't even know what to do with this situation.  I feel absolutely overwhelmed in the worst way possible.  I can't even approach this until next week.  I have an entire day in Court tomorrow to support a good friend and a wedding in Wyoming I am decorating for all day Saturday.  It never ends... 



Thursday, September 27, 2018

Deep Waters

I woke up this morning on day two of my Cosentyx hangover and to my surprise, I could hardly walk.  I forgot I had an appointment at the Rheumatologist's first thing so I hobbled off to that and it felt like the perfect thing to do on a day such as this.  Usually when I go, I'm feeling alright and it feels like a waste being there but not today!  Nope.  I had all sorts of complaints to keep him busy for 2 solid hours with yours truly!

Right off the bat, he noticed my hands were swollen.  Each joint on my fingers are red hot and big.  He ended up doing ultra sound on most of my joints and they are all in active inflammation and swollen, even my Achilles tendons.  If I have the choice to cry or be sarcastic, I will typically resort to sarcasm but there is a language barrier with my doc so what I think is freaking hilarious, he looks at me puzzled.  So, it was sort of a waste of good jokes but the nurse was trying to keep it together.

I mentioned my shoulder problem the other day and how I opted out of the cortisone shot.  Today, my Rheumy doc looked at it through ultrasound and it's a mess.  The ends of all the tendons are calcified.  The joint has eroded so the bones are grinding together and smashing all those tendons and ligaments as I move my arm which is causing the impingement.  And, I have bursitis.  So, under guided ultrasound, he slipped a needle into the narrow space of my joint and filled it up with something, hoping to create some temporary space.  I laid there for about 15 minutes for it to settle in and then he tested my mobility.  It was only marginally better but still so painful.  He then did a second injection of Cortisone with strict instructions to rest my arm for a week.  He's afraid I'm going to have no choice but to do surgery to clean out all the calcification from the tendons and ligaments, clean out the rotator cuff in hopes of saving what is left of that joint.

It doesn't appear that the Cosentyx is doing the job.  I wanted to call it quits and just try to remedy this disease in alternative ways but what I saw and felt today, scared me.  For now, I'll finish the 5 week loading dose but I may have to start weekly infusions at an infusion center which is going to suck!!!

When I finally got out of there, I had five missed calls from Salt Lake.  They need to get Shelbie in for another high contrast CT Scan of her lungs!  Before Tuesday.  I am so over this! How many times do they need to keep looking at her lungs!  I think they are in denial that she has a lung problem...plain and simple.  Let's just start treatment and move ahead!  This is a terrible way to live, hanging from one test to the next. Next week already has me exhausted.  So, now, we will be down there Monday, Tuesday, Thursday and Friday!  Back and Forth...

It's been an overwhelming two weeks.  I know I have to make some serious changes to my life but I don't even know where to start.  I don't know how I can keep up with one job, let alone all 5 when I am spending the majority of my days in doctor's offices and hospitals.  It is ridiculously foolish to think I can keep up with this pace but at the same time, doing anything less than what I do, makes me feel like a slacker, and a whiner.   I'm losing this battle.  I'm going to be incapacitated in more ways than one if I don't muster up some courage to face some hard decisions.

The most devastating thing I have had to endure, besides divorce, was being laid off in 2009.  It was a horrible feeling to have a living wage disappear in 10 minutes.  It has taken me years to recover from that and I swore to myself I would never leave myself vulnerable again with just one stream of income.   I am really busy with my design clients right now, but I don't dare rely on that income alone because it is so dependent on the economy and I have no hope in that right now.

I feel like I'm drowning tonight.  I had to go through some big changes with church on Sunday.  Our ward was split and I am in a different ward now.  I know the new people I congregate with will be awesome great people but it feels like a terrible time to lose that safety net of people who know and understand our situation.  It's overwhelming at best and to go through it all again with new people is kind of devastating.  I already feel like my life is way too big, even for me to handle.  It's just plain embarrassing to discuss it with strangers. 

Last night, my new Bishop and his counselors came over and I really think they are great and I was really trying to not freak them out and Shelbie was there so I always try to sugar coat things so she doesn't feel alarmed hearing the story of us, spoken out loud because trust me, when I run down our reality, it brings me to tears.  They asked about possible callings for me and I was all excited on the outside but inside I was dying, and when they left, I cried because I can't do anything they suggested.  I am at the end of the proverbial rope and I hate it!  That's another reason, I need to change the course of my life.

That's a lot of rambling tonight.  I have my work cut out for me.



Wednesday, September 26, 2018

Wishful Thinking

Two weeks ago, I started my injections in hopes of putting my Ankylosing Spondylitis into remission.  The first injection was a piece of cake...it hurt a fair bit but no reactions or funky side effects.  It felt like a win, actually!   From past experiences with similar drugs, I thought I would be in for some crazy swelling and other reactions. 

Week two, I had no reservations about giving myself the second injection.  I didn't think it would be much different than week one.  I missed the mark on that assumption.  I was thoroughly miserable! Miserable!! I was so sick just a few hours later and the following day felt like I had influenza.  I didn't but those are the written side effects.  So, tonight, it's time for my third injection and I'm not excited! I'm thinking it may result in death or close to it...Probably not, but if it's incrementally worse, then I'm in trouble.  This is why I generally have to be in serious trouble before I will take pharmaceuticals.  They seem to create a dozen new problems.

And another thing...the first thing on the instructions says..."Don't take this drug if you are allergic to Secukinumab."

I have a couple of questions about this...how do you know if you are allergic to Secukin-watchamicallit...Is that something we should just know?  Because I don't know that.  And!! I'm a little concerned, that I don't know that information.  It seems important.   Seeing as how death can result if you are allergic, it seems like high stakes.  It's like a game of Roulette I guess.  So, going in to tonight's injection, I'm like...will I live or will I die...nobody knows. We'll know in the morning when someone comes looking for breakfast.

Also, who came up with that name?  I suppose it's the scientific name because the commercial name is Cosentyx but that's a weird name too. I've spent more time than I'd like to admit trying to figure out what this name means...like trying to read someone's vanity plate on their car when all of the vowels are missing.   I'd like to sit around the conference room coming up with drug names.  I think the name should reflect more of what you can expect from the medication, not a name that means nothing.

For example...

In-F-ectu-al-  It's pronounced ineffectual...this would mean, 'Don't expect to achieve relief from your disease.'  So, I think that would be a good name for this drug.

Moribund-  Just pronounce this the way it sounds.  It means...'As I lay dying' because that's actually what it feels like for 12 to 18 hours after each dose.

Swind-EL- This isn't a bad option either because it robs you of what little health you had before treatment and after you pay for a month's dosing...you're basically too poor to pay for month two, but that's not all bad because if you're allergic to it, there won't be a month two. It's a win/win.

I really don't think this drug is going to help me.  Honestly, I still curse trying to get out of bed in the morning, or take a deep breath...it's all pretty painful but maybe the crooked pharmaceutical companies think it helps because you forget how much pain your in, in lieu of vomiting for 12 hours instead.  Maybe that's where they are coming from.  I'm not sure.

At any rate, I haven't slept for roughly 37 months because of inflammation and an impingement in my shoulder, and since this shot is slow to work, I asked my doctor today for a cortisone shot.  Apparently, since it wouldn't be going in the joint, but in the bicep tendon, the risk of rupturing that tendon is pretty high and would result in not being able to move my right arm and surgery would be required to reattach it.  Since he put it that way, I opted to pretend the pain away.  He suggested taking a month off from using it...that's an interesting option but I think I'll just pretend it doesn't hurt.  I'll just pretend I didn't need to lift anything, raise my arm higher than my elbow...that should work out just fine. 

It's been another award winning day!  Whew!  It's good.  Lots of good stuff here. 

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...