My Eight Week IV Fun Fest

Real quick - I SWEAR ...

I got my Central Line installed - it broke my brain (see previous post if you are confused and / or you care) and I headed home three days later than planned since it snowed in Dallas and they could not start my Home Health Nursing Care because they could not drive my drugs to Houston ...

Problems like freak Winter storms became the norm of my 8 Week Count down.  My favorite was that I was using an Infusion Pump that said the software was written in 1987 - and it behaved EXACTLY LIKE something well beyond it's prime - malfunctioning more than it worked correctly.  It was fun!  Especially the part where they did not supply the User Manual - Fun, Fun, Fun Times!

I managed to take one semi-appropriate shot of me giving myself an injection.  Modesty - heck - actual taking a photograph - was not high on any list of mine at the time - I was just too sick to care:

Fun times ...

When the eight weeks were up - somehow we had accrued a two years supply of all sorts of medical supplies that we will (hopefully) never use again ...

Anybody need a hundred syringes of Heparin?

And since I am out of photos and I am not going to go into my two hospital stays - or the time I mostly ripped the catheter out (by accident) and had to go in and get it re-stitched up or the number of nights that I was so messed up I didn't dare go to sleep for fear I would die in my sleep ... Or any of a number of issues that I suddenly had to start dealing with ...

Take all that out of here and there really is not much left.

A SHORT POST!

Written by ME!

Who would have thought it possible?

Not me ...

THE END.

Twenty Thirteen - A Quick Recap ...

The year Twenty Thirteen turned out to be very simplistic in a very confusing and complicated way.

Let's just hit upon one subject - how much more simple can a single subject recap of an entire year be?

 

We will enter just the highlights in the category of: "My Health"

 

Oh yeah ...

 

February:

 

One day I walked in the kitchen to get a glass of milk. I opened the fridge, unscrewed the top of the gallon milk jug and the last thought I had was that I was 'going down' and how in the world was I going to protect my head from the granite counter top and the tile floor?

Apparently my head is much hardier than my feet as I soon discovered.  Upon waking me - after experiencing what I can only imagine what must have been a very luxurious "Milk Bath" - Gary found me still unconscious,  clutching an empty gallon milk container and having had absorbed every drop of milk from the jug.  And yet - my head was unscathed! 

 

Somehow I had broken my foot though, in a very complicated manner.  It was called a Lisfranc Injury. 

 

In Wikipedia it states:

 

The Lisfranc injury (also known as the Lisfranc fracture, Lisfranc dislocation, Lisfranc fracture dislocation, tarsometatarsal injury, or simply midfoot injury) is an injury of the foot in which one or more of the metatarsal bones are displaced from the tarsus. This type of injury is named after Jacques Lisfranc de St. Martin (2 April 1790–13 May 1847), a French surgeon and gynecologist who first described the injury in 1815, after the War of the Sixth Coalition. 

The surgeon had noticed this sort of injury in soldiers who had fallen off their horse.

I do not recall actually riding a horse into my kitchen, but weirder things have happened to me ...

And, of course me being good friends with 'Murphy' surgery was required to re-align and repair the broken bones.

 

March:

 

Surgery on my left foot was performed.

A few weeks later I was very ill and I was starting to tell Gary it was time to take me to the ER when I began to have multiple seizures.  Unfortunately, I was conscious for the first few seizures and nothing in recent memory has terrified me more.

 

April:
 

One Saturday morning, Gary tried to rouse me, but could not ... for quite some time.  

 

When I became conscious - I was deaf, paralyzed and experienced some other disconcerting things that - again - until unconscious - was rather terrifying.

 

At the hospital I was subjected to what was to become a 'typical' battery of tests.  The MRI, the ER Doctor told us (and a very kind man from our ward) showed that I had suffered a 'venous thrombosis' or in English:I had a stroke, but it was very unusual as it was in a vein and not in an artery like a usual stroke.

 

Apparently I am rather difficult and complicated when it comes to my health ... 

 

Not so unusual for my personality - but seriously ... why can't 

 

 

SOMETHING, 

 

 

ANYTHING 

 

 

in my life be simple and uncomplicated?

 

JUST ONE THING?

 

WHY?

 

May:

 

Had the enjoyable experience of going through my second production of a kidney stone. It had been less than six months since my very first one.  Apparently when it comes to my health - I am a late bloomer.

 

June:

Multiple seizures.

 

July:

 

Annnddd again with the seizures.  

 

Ambulance ride to another Memorial Herman Hospital.  The same 'family' of hospital but with the difference of having a full neurological floor and much better imaging equipment. 

 

Of course explaining some of this at the time of the transfer, but I was not being transferred because I would be among better versed Neurological Doctors and really cool equipment.  No.  I was later told the truth: They thought they were going to have to do emergency brain surgery but the better equipment somehow showed it was not necessary.

EMERGENCY BRAIN SURGERY ...

 

We decided that since this place had a 'Full Neurological' floor - that next time - if we were driving ourselves there (and since no one could even come close to explaining why I suddenly started to have seizures / develop epilepsy there was most definitely in our minds going to be a 'next time') we would head to this hospital thus ensuring that I got better neurological care. 

 

August: 

 

Started getting sick like I usually do right before the seizures start so we drove to the 'Full Neurological Floor' hospital.  I couldn't stop throwing up and we tried to explain the 'Neuro' issue, but they stuck us on another floor.

 

Very disappointing.

 

In the middle of the night a doctor came in and asked: 

 

"Do you remember me?"

 

Not wanting to fail this simple test - I hedged and said: "Maybe"

 

He said he was a Neurologist and that he was moving me to the 'Neurological Floor'.

 

I was SO relieved and mentioned our non-successful attempts.  He then said "

 

Well, since I watched you have 15 seizures in a row, it sort of seems appropriate ... now" 

 

And then he said he would see me in the morning and left.

he next morning he was back and I apologized for not knowing him and he said: "Well, fifteen seizures in a row tends to 'thrash' your brain. You were also totally conscious the entire time. 

 

TOTALLY COOL!

 

I have read about it but never seen a person who experienced them!"

 

I told him I was ever so glad that I could make his day - and if he could figure out why this was happening - I would name my first born son after him ...

 

He told me he was not sure he could solve it - it seemed very complicated. He mentioned that even when he asked the ER about not starting me out on the Neuro Floor - they told him that my explanation was so bizarre they thought I was crazy and that I should be pretty much happy that I was not on the Psych floor.

 

Good to know ...

 

I told the Neurologist; "That's OK - my First-Born son is 24 years old and just might resent me changing his name ..."

 

Presently, the theory is that it is a blood pressure fluctuation issue.  Since I am overweight - I was feeling rather guilty until after some testing and studies - they said it was probably genetic or random and that the main thing was that other than watching it with medication- there was little I could do about it.

 

I feel much better now that a huge, stinking pile of guilt has been removed ...

 

September: 

 

Can't remember if I had any seizures ... probably all that 'Brain Thrashing' ...

 

October:

 

Seizures ...

 

November:

 

On the Saturday after Thanksgiving, Ryan was checking on me - apparently it was his turn to 'Babysit' me.  I had been too ill to sit down and even eat with the family for Thanksgiving Dinner.  It had been the first time this had ever happened, an all time low for me and presumably I was pretty ill.  Just felt sick - but apparently it was more than that.

Ryan mentioned the problem to Gary when he got home and Gary called 911.  

 

Since I still could not be roused by the time the EMS personnel had arrived, they all decided that it was pretty serious and that I needed to be Life Flighted to the Medical Center.  They drove me in the ambulance to a nearby Elementary School where the helicopter picked me up in the Schools field.

 

I am sure it was very exciting and all, but I was unconscious the entire time - so no fun times for me!

 

As I was still unconscious after working on me in the ER, they recommended to Gary that I be intubated.  They said that the respirator wouldn't really bother me since I would be so drugged up - so the decision was made and I was intubated.

 

Thus began my very sad mental slide from 'Keeping It Together' to 'Total Mental Chaos'.

 

First problem: 

 

They inserted a tube that was just a twee too big for my throat and my throat started swelling around it.

 

Second problem: 

 

I woke up some time on Sunday so quite a bit of time had elapsed. In addition I was in and out of some state where it was hard to distinguish what was dream and what was reality.  

 

I thought at one point that I heard Gary talking to a doctor about me falling.

 

Had I fallen down the stairs?  

 

I didn't know ... 

 

Which was the:

 

Third problem: 

 

No one ever thought to sit down and tell me what was going on.  This is not a fun scenario, people.  

 

They did - AT LENGTH explain the:

 

 

Fourth Problem:

See First Problem. 

 

They explained over and over that I was on a respirator and the reason my wrists and ankles were tied down to the bed.  Each time they suctioned out my lungs - it was so traumatically painful I would involuntary jerk in pain and desperately try to tell myself that I couldn't aspirate anything into my lungs by this method or:

 

Problem Five: 

 

Would have occurred - 

 

They would have IN ADDITION TO ALWAYS YELLING AT ME TO STOP JERKING I WAS TIED DOWN AND THAT WOULD NOT HELP RELEASE ME they would have TOLD ME that I could aspirate junk into my lungs like this ...

 

Right?

 

Since no one offered me paper I could neither tell them that this was involuntary nor ask them about aspirating stuff into my lungs OR ANY OTHER QUESTION that I might have had - which was hundreds - so maybe the reason a pencil and paper never materialized ...

 

Problem Six:

 

Was on Sunday when my thinking became much clearer and they stopped saying that they were giving me morphine to help with the comfort of the respirator.

 

They explained that due to the swelling in my throat they had to take me off all my medications and start me on a very high dose of steroids to get the swelling to go down.  When it had gone down enough, they would be able to pull the respirator out without damaging my vocal chords.

 

Then the two 'Respirator Doctors' said that they would see me Monday morning and walked out the door with me screaming: "WAIT!"  Over and over again in my head ...

 

Monday morning and 'Respirator Doctors' came, shook their heads and said: "No, we will see you in another 24 hours," and out the door they went.

 

So, of course, in Addition to the screaming in my head came:

 

Problem Seven: 

 

How am I going to survive the next Twenty Four hours? And tiny cracks and fissures began forming in my brain as I thought about the hourly painful lung suction and being tied to a bed unable to get answers to questions I desperately needed. It is SIMPLY AMAZING how long a minute can be under these circumstances ...

 

Problem Eight: 

 

Tuesday morning and 'Respirator Doctors' repeating their Monday Mantra.  What was difference?  

 

The cracks in my brain were at some sort of Red Line Status and it had been a while since I had been diagnosed with PTSD (Post Traumatic Stress Disorder) and my controlling serious out-of-control panic attacks skills were more than rusty ...

 

BUT!

 

Wednesday morning the tube came out!

 

It was the first time I could talk to anyone about my out of control pain, or ask questions or asked what happened.  My Hospital Doctor had taken me off all my pain meds and life was pretty unbearable.

BUT THE TUBE WAS OUT! 

HAPPY DAY!

My worries were over ...

Until we were informed Wednesday afternoon that they had figured out what had brought me to the hospital in the first place: 

 

Problem Zero: 

 

I was a few hours from dying from Septic Shock.  I was currently infected with a staph infection and would have to go on an Eight Week IV Antibiotic Therapy to get rid of it.  This seemed totally impossible since for a year I had been totally incapable of staying of the hospital for 8 weeks ...

Apparently my two hospital stays while I had my central line in - in 2014 proved it can be done ...

Up to this point, I harbored a secret dream that my scheduled surgery to insert a Pain Pump would still go forward on December 12th.  As it was December 10th at the time - I was being pretty unrealistic ...

As it was, I was going to have a Central Line inserted into my chest on Friday, the 12th - and as opposed to the first time I had one inserted - this time I would not be under general anesthesia - just (what I thought) was those drugs that make you loopy and totally forget the procedure once you come to. I was a bit nervous and skittish, but decided I could live with that ...

Friday came around and I was moved down to the Radiology Room for quite a bit of a wait - then they came in - told me that it would be five minutes at most and whisked me off to the operating room.

They started, and IN ADDITION to being fully conscious and not loopy at all - the pain was so severe I was having a hard time not jumping whenever the scalpel / needle pierced my flesh. The (apparent) trainee seemed to take umbrage with this and after twenty minutes he disgustedly told the guy with him that he had totally messed up and he would need to start over and fix it. 

They spoke as if I couldn't hear them - which was nearly true based on the complete and totally uncontrollable screaming That was going on in my head.

The 'My Brains Total Mental Chaos' was almost complete ...

The other guy working on me (I REFUSE to refer to them as doctors) finished up rather quickly, then the transportation guy was there to take me back to my room.

I was completely exhausted and seemed as if I was moving under water ... in a totally catatonic state.

My doctor came in about a half hour later and I was still sitting on the side of my bed more traumatized than I have ever felt ... in forever. She asked how it went, and so I told her. I said that I asked afterwards what they had given me and the guy who was playing anesthesiologist said: "Morphine" which I have built up a tolerance to - thus it hadn't worked at all. 

As I was figuring this out - so was my doctor who then said (and I quote): 

"If you didn't eat Morphine like it was candy, it wouldn't have happened." 

Using a disgusted voice - this explained a lot on why she had taken me off my pain meds in the first place, and I was taking a dose my doctor had prescribed to me based on my pain level.  There was nothing like 'candy' about it ...

I remember just staring at this woman thinking: 

"If we could just trade our pain levels for one day: JUST ONE DAY you would never have said that to me."

And my brain suddenly dissolved into a million pieces consisting of pain, anger, disappointment, sadness, frustration, helplessness and fear ... so much fear.

I don't understand why - but the drive home was rather telling - but it is late and I have to get some sleep!  I thought I would do a quick recap, write a few things about the 8 Week IV Fun Fest then move on to the Pain Pump Surgery and its aftermath yesterday - but it is clear to me that two more posts are in order!

Each has photos - sorry this one doesn't - but if this post does anything - it highlights the fact that my year in 'Health' is one big Whine-a-Thon and why I didn't write it in the first place.  But people have been asking so ...

READ AT YOUR OWN RISK!

You're Welcome

I'M BACK!

Since I was basically in and out of the hospital(s) the entire last year / this year I have not travelled or taken photos which breaks my heart - my photos -  since becoming ill and discovering photography while living in Norway (2004 - 2006) are my love, my joy, my reason to get up in the morning ... 

Thus it has been rather frustrating for me, but I happen to be surrounded by people who love me very much, and knowing my obsessive love of flowers they kept me "fully stocked".

While talking to my very good friend who faithfully came over to my house twice a day to let out Charlie when I could not and then continued to do so since I have been in the lovely position of not being able to rouse me and upon arriving at  the hospital was told I had only hours before I would have died as my systems were shutting down ... 

Thus Gary wanted someone to check on me as he puts it 

"To make sure you are still breathing" 

which never ceases to amaze me since I have been a very huge pain lately - I am super pleased he is still valiantly trying to keep me alive! But she was being super nice since a phone call would do - we both know that, but she is wonderful company and one more reminder to me that there are many people who love me - surprising but true!

So we were talking the other day discussing my missing my photography and all that goes along with it and said, smiling: "Even I am getting sick of photographing flowers!"  And we laughed.

That night I realized that was not really true and even though I had not been posting them, the were all stunningly beautiful and when I was well enough to stand up - I made sure I documented my treasures.  

Sadly there are a few "holes" where I missed catching them in full bloom and wile going through the photos today - could have kicked myself for not just hobbling out there and taking a few shots.  

Now those beauties are in a landfill and will never grace my blog or my computer - and to me - that really is a loss ...

So I have been editing those I have received in the past few months - some of the most stunning I have received as of late - so an extra treat!

Gary brought these beauties home all closed so that I could watch / photograph them open.  

Sadly, My computer is acting hinky right now and I had copied them over before the keyboard decided to quit working (and yes - I have tried multiple keyboards).

My computer has not been the same since installing some legitamite piece of software and telling it that NO - I didn't want the Bing Toolbar installed and then it 

WENT AHEAD AND INSTALLED IT ANYWAY.  

Am I bitter?  

I SO moved beyond bitter a month ago ,,,

But the flowers are pretty, yes?

Here are my Belated Valentines Day Tulips.  

Again - Gary brought these beauties home all closed so that I could watch / photograph them open - which I did, but missed the end when they wewe all open ... 

So sad ...

Almost all open ...

My wonderful Relief Society President dropped these off for no reason one day.  They are stunningly beautiful at any time of day, but I happened to be hobbling past them when the light was hitting them just right and was able to do them justice;

I have been playing with some painting Apps on my iPad since I am not able to sit for long.  

I have been taking advantage if all the Photo Apps I have amassed:

These were from a wonderful friend and I was feeling rather good when they were brighetining my home so I have a TON of photos.  Aren't they the most spectaculer mix you have ever seen?

And the reason this post was written:

Another wonderful friend would about weekly drop off flowers from her yard beautifully arranged in a vase.  

She is my Flower Fairy Guardian Angel and does a spectacular job of it!  

As I type this I am remembering all of the vases she has brought over that are on my computer and not here on my iPad.  

I will have to go find them and add them tonorrow when it is not past my bed time!

As I mentioned - this was the reason I started this.  I wanted to post photos of these beautiful Bluebonnet's and let her know that I took these photos today.  

When she dropped them off, she was leaving on a cruise and mentioned that she wouldn't be home to enjoy them so she was bringing them to me to enjoy - which I have.  

She arrived home from her cruise today so it was perfect and they still look beautiful!

I will post the rest soon.

Twenty Eight Weeks, Four Days, Seven Hours & Thirty Two Minutes ... What I Have Learned ... So Far ...

That is how long it has been since I was laying in bed in April - very ill and had just opened my mouth to tell Gary that I thought that it was time he took me to the ER when I started having a seizure. See - I KNEW I was having a seizure because I was still conscious and it was the scariest thing I can remember (I have had something happen to me that was scarier - but I cannot remember what it was. I dreamed about a smell about a month ago and woke up terrified - more terrified than I have ever been - I believe it has something to do with what ever happened - but that is for another time - I just thought I would clarify that I am not lying about this being scary). I have been through a LOT of scary things - but none took over my body and would not let me do what I wanted until it was good and done with me.

It stopped after what seemed ages but was probably measured in seconds. I got out a shaky 'Help Me' before another seizure shook me. And then another.

I don't remember much of the rest of the night - thankfully the Greek god Hypnos took over and I did not need to experience any more seizures. This was my first time in a hospital in years. The memories it brought back were neither happy nor comfortable. But I was an AMATUER!

I have since been to the hospital seven more times and feel as if I am becoming much more of an expert at it.

I have separated out my new-found knowledge into sections here - enjoy - or stop reading - what ever ...

Hospitals:

- Power. You have none. Nothing more to say - just get over it.

- Dignity - see above ...

- You tend to collect doctors - and they all have their own idiosyncrasies - and choice of meds. It tends - after eight fun-filled trips to the ER - to get rather complicated.

- You can always have a plan of what to do the next time things get bad - this does not necessarily mean that it is going to work ... We decided that next time I started throwing up violently that we would take me to the ER since April the throwing up has always, always been followed by seizures. So we were going to the last place I had been since I had been transferred there from where we had been going that was closer to us. They had explained that they had a full Neuro floor and better imaging instrumentation. They failed to mention that the reason they were transferring me there via an ambulance with lights and sirens was that they thought I needed emergency surgery - ON MY BRAIN. The food was better too - so the plan was to head there and they would take care of me.

As luck would have it - I started throwing up the night before Gary was headed on a backpacking trip. I started throwing up every twenty minutes at midnight Thursday/Friday and at 4:00am I finally woke him up and told him I had to go in. I could tell he was frustrated. Especially since I was only throwing up - no seizures - but I am so scared of them - I didn't care and since he is a wonderful man - he took me in.

We told them our story and they stuck me in the ER where I tried to tell my story to a nurse and doctor while throwing up in a bowl. I will mention here - skip ahead 2 weeks and I am at my new cardiologists mentioning how badly our plan had gone awry and he said - 'Well - you have a very unusual case ... and they thought you were crazy.' Well - that explains a few things.

They transferred me to the eleventh floor - but started to read my records and did see that I had seizures so they sent in a masochistic tech to give me an EEG and he started to attach eleventy-billion doodads to my head and hair with sandy glue. Oh boy! And TO THIS DAY - I could swear that I was conscious the entire time. He had told me not to talk - I asked him just to keep me informed of how much time I had to lie there perfectly still since the sandy glue sucked and every time one of the billions of leads fell off I thought he was going to slug me. And then it was over.

They took me for an MRI - with contrast - of course - just like I had had five days before (Monday) and then for some reason - they moved me to the Neuro floor.

That night - I don't remember much of what was going on during the day - and I didn't know why. Why was I so confused? Why was everything in stop motion? Just polaroid shots of images? I couldn't grasp and hold onto anything ... and I was crying - I had no idea why - tears were just leaking out of my eyes when a young, handsome doctor walked in and said "Do you remember me?" I said I was not sure and was embarrassed that I could not stop crying - I apologized for being 'such a girl' and told him I had no idea why I was crying and he told me it was a stressful time and a lot to take in. Take in? Take in what? I made me follow his penlight, point to what fingers were moving while looking into his very kind brown eyes and then had me smile and push my arms and legs against him trying to hold them down. "Try to get some sleep - I will see you in the morning." and he was out the door.

He came back looking very tired and I realized that I don't think he had gone home between seeing me the night before. He explained to me that the MRI showed that the venous thrombosis was gone - my BLOOD CLOT had disappeared so they were taking me off the warfarin - no more RAT POISON! I could not be more thrilled ... until he said that he was in my room while I was having the EEG and that yes - I was conscious during the FIFTEEN seizures I had while hooked up to the equipment. He said I was talking to him and it was clear that I could be conscious during a seizure - something he had never seen but had read about - it was really, really rare and he agreed - it was most likely very frightening.

This news was not so great. He kept checking on me and I realized that I had some paralysis and weakness on the right side of my body. He told me a few days later that anything over 5 seizures all in a row will really 'thrash your brain' which apparently mine was ... this made me rather uncomfortable.

As the days progressed I collected doctors like baseball cards. A Cardiologist, a Rheumatologist, a Hematologist along with my Neurologist - who was only a hospital specialist - he did not see private patients. He did his specialty in what my brain was doing so I was lucky he was there because it was the first time we got a diagnosis as to what was happening - rather than just reacting to it and making it stop. I called him 'House' especially since I could not pronounce his last name - he was American - but it was rather weird and my brain just could not hold on to it.

He thought at first that I had vasculitis and immediately put me on steroids which he explained would stop the seizures. The problem in my brain has always been clear in the MRI's - my arteries and veins are constricted to the point where the pressure causes stuff to leak into my brain - causing nausea, violent vomiting and a host of other unpleasantries. This was the first time we realized that by the time I was throwing up - the problem had already started in my brain.

A bit later he came into my room and sat down and said that his 'House' and my Rheumatologist's 'House' had talked on the phone the evening before for about an hour and decided that it might not be vasculitis at all (but failed to mention why - the Rheumatologist told me later - so next time I see my cutie Neurologist - I will firmly slug him in the stomach ...) but that it was PRES. I had heard this term the first time I was admitted for my first seizures.

PRES cutely stands for 'Posterior Reversible Encephalopathy Syndrome' the cool part of that is the 'reversible' part.

Wiki states: Posterior reversible encephalopathy syndrome (PRES), also known as reversible posterior leukoencephalopathy syndrome (RPLS), is a syndrome characterized by headache, confusion, seizures and visual loss. It may occur due to a number of causes, predominantly malignant hypertension, eclampsia and some medical treatments. On magnetic resonance imaging (MRI) of the brain, areas of edema (swelling) are seen. The symptoms tend to resolve after a period of time, although visual changes sometimes remain.[1][2] It was first described in 1996.

They explained it as a pressure in the back of my brain - and they thought that it was brought about by my blood pressure fluctuating - some times it is violently high - sometimes it is very low.

They wanted to finish up the IV steroids before they sent me home on prednisone and then - wham bam I was out the door - with a list of new meds and a bunch of follow-up visits.

Since I am what is called a 'hard stick' and my veins are getting more and more ... stubborn - this was not a pleasant part of the stay. I cannot figure out what this is:

One night my IV blew - a very normal thing. The eight tries to get another one started was not. It blew in the night and the six attempts in the morning to start another was not very much fun either. We even got so desperate we tried the underside of my wrist - three times on each arm - turn your arm over and look at those itty bitty veins right below your wrist - a) it hurts like hell to jam a needle in them and b) they are too small - they will blow every time - so pretty much my nurses were either desperate, stupid or just being mean ...

They finished the steroids and I headed home, and collapsed in bed - completely exhausted and overwhelmed.

 

Doctors:

- Doctors equally love and abhor a good mystery. Which is me ...

- If one more person looks at with me with manic eyes and says "What you have / did / etc. is really, really rare!" I will probably throw something at them ... At first it made me feel special - it validated that something was really wrong with me - now it is just annoying ...

- Doctors vary in the quality of care that they are giving you. I have learned that since I was busy with the medical profession and hospitals years ago things have changed. There are hospital doctors who do not see patients in a private practice and then there are doctors that see patients at a private practice but have no hospital privileges. This is frustrating because of the lack of continuity. There are a few special ones that actually still do both - the trick is finding them ...

- At my follow-up appointment with the Cardiologist - one of those rare ones that sees patients and works at the hospital - we came up with a plan that would actually work next time I needed to show up at the ER - so I was happy.

- I then saw my Rheumatologist who explained that they didn't think it was vasculitis since with vasculitis it NEVER gets better without steroids and I had seizures before where I didn't deteriorate and die without steroids which is basically what happens with it - so we are now weaning me off prednisone.

Just so you know - being on steroids is AWESOME! I have never sweated more in my life. I probably have actually sweated more buckets of sweat this month that I have in the other 51 years of my life - seriously AWESOME ...

Just to show you - I needed to stand by my desk and do something for a bit ... here is what I had to clean up:

Like I said: AWESOME ...

Prescriptions:

- Lovely segue into prescriptions. Like I mentioned - each doctor has his own likes and dislikes and it is a hard thing to balance everything out. I came home with a two page list of prescriptions to take from my last hospital stay and that listed none of the PRN (take as needed) medications. See here:

My prescription stash? HELL NO! This is just a batch Gary brought home from Walgreens one evening. I was going to take a photo of all my prescriptions but just couldn't do it - it is too overwhelming. It is in triple digits (yes - this includes duplicates and other things) but it is all rather overwhelming. Some days I feel as if all I do is take my meds ... nothing more. And yes - I realize this is no way to live your life ...

Gary:

- Gary, to put it mildly is not having a good time. He has taken on most all of the responsibility of the house along with working full time. I feel sorry for him but I am too tired, sick and overwhelmed to help.

- He has started a multitude of projects and I have taken photos but have yet to have the energy to post them. I will - it will just take a bit.

- He brings me home flowers all the time - he knows I like to photograph them and since I don't get out except for Doctors appointments I have nothing to photograph. I sorta wish he wouldn't hand them to me and say: "Here - these are your 'I'm happy you didn't die flowers'" but actually I am rather glad he is happy - if I died - things would be ever so much easier on the poor man ...

I do like to photograph them though ... I do take multiple exposures (thus the tri-pod) to make HDR photos but have yet to get the energy to play around much ...

- Maybe one day I will be able to make it up to him - but I have no idea how.

Facing Your Fears

- Yes - I am terrified that I will start throwing up - knowing full well now that seizures are on the way. I take my blood pressure medication faithfully since they think it is the fluctuation, but I was on it before and I still had seizures - so I realize it is just a matter of time. It seems to be wearing me down and I really need to suck it up and stop living in fear of these abominable creatures that sneak into my body and take control ...

- Since I am no longer on Warfarin (blood thinners) I can start again with something that my doctor thought it was time for - a Pain Pump. It is surgically inserted and delivers a small amount of pain medication into your spine which is way better than taking huge doses by mouth. I was hoping there were other options and asked my Rheumatologist if there was anything and he said I was on such a high dose of morphine that was no longer working that I was 'out of options'.

I had an appointment with the surgeon that does the Pain Pump Trial yesterday and got all my questions out of the way. I don't know why I am so afraid of the entire procedure - yes there are a TON of risks but I truly am out of options and I have heard that it really will help my quality of life.

So Friday I head back to the Pain Clinic so they can insert a ginormous needle between T10 and T11 and inject some pain medicine in my spine to see how I do. They have said that there has been nobody that did not say this worked for them.

I then go back next week and schedule the surgery for a few weeks later and go from there. I hope it works. I told the surgeon (who will do the Friday procedure - another surgeon in a hospital will insert the Pain Pump and the catheter into my spine) that I wanted my life back - I wanted to travel and take photographs and I was not ready to be done. He smiled and said they would do their best to get me on my way ...

and I believed him.

The recovery from the surgery is dangerous and long but I know I can do it ...

Wish me luck ...

Box Crazy ...

My husband is a FANTASTIC Scoutmaster. He is actually not a Scoutmaster right now - but has been many, many times. I remember once when he was called how many of the parents in the Ward had told me how excited they were to have him be their sons Scoutmaster - I understood.

When a bit later he was released to be called to the Stake High Council a couple of those same parents came up to me and said they came 'this close' (finger and thumb mere millimeters apart) from standing up during Stake Conference and objecting - I didn't understand ...

 But was enormously happy it didn't happen.

Still - the man is basically a 12 year old in a gorgeous mans body. He seems to have the energy for it too.

Gary finds it physically impossible to sit around and just read a book, do nothing, veg - it is nowhere in his make up and as foreign to him as a day as a Sherpa in Nepal.  Since it is basically all I do - I figure energy wise - we even each other out ...


Everyone loves him as Scoutmaster - basically because every year he applies for the Philmont Lottery and basically generally gets it. So the boys get to go to Philmont. The older boys are always treated to some amazing, fantastical High Adventure experience - usually involving canoes, rivers and white water rapids.

His goal - ALWAYS, ALWAYS - is to help the boys earn Merit Badges. This is for his underlying ULTIMATE goal: to have the boys, by 14 ready to start working on their Eagle. Ryan earned his when he was 12 and we were moving to Norway.

On the day we stepped on the plane for our New Adventure on the other side of the World - EVERY SINGLE ONE OF HIS SCOUTS (and, yes - they are MOST DEFINITELY 'his' Scouts) had all the requirements to start working on their Eagle.

Every.


Single.


Boy.

If there is one thing my husband does not understand or know much about having rarely experienced it is: failure. He sets out to do something and he gets it done - no excuses, no dilly dallying - just work with your head down until it is finished.

In our house in Sugar Land he wanted a bigger patio. So he built the forms and poured it himself.

In our house in Sugar Land he needed 220V power in the garage to run his Industrial Strength power tools, so he wired it himself.

In our house in Sugar Land the tile in his shower was cracking - so he bought a book on how to tile and tiled it himself.

In our house in Sugar Land we got tired of our linoleum floor in the kitchen - so he tiled it himself.

In our house in Sugar Land, one sleepy Sunday morning, Ryan came in our room and told us that it 'was raining in the kitchen' ... a leak. So Gary repaired it, re sheet rocked? the ceiling and painted it himself.

I truly believe that there is nothing that he cannot do.

The man is magic - pure, lovely, wonderful, pure magic.

A month or so back he realized that he needed to make some more small Shaker Boxes. He had made them for all the boys in Young Mens (he is the Young Mens president and HEAVILY involved in their Scouting). I showed it in an earlier post. Inside he had taken leather and his leather kit (yes - he tools leather - are you surprised?) and cut out a piece for a Buck brand pocket knife. He tooled into then leather the inscription "Buck Up" above the pocket knife and below it "Do Your Duty to God". He decided that at least it was different and was hoping the boys would keep them in their room somewhere and maybe, just maybe they would do some good.

Enter a new batch of young'uns and he decided he would make 'just a few more' boxes for them too and out he went into his beloved wood shop - which - of course he built - added support beams to the ceiling, laid down the plywood for a fabulously HUGE attic (his shop doubling as an over sized 3 car garage - but don't mention that to him - it makes him ... testy), sheet rocked the whole thing, painted it, added chair rails - cause - you know - you might hit the wall with a large piece of equipment, wired it for 220V complete with a separate fuse box, installed banks and banks of fluorescent lights (my sister calls it the 'Tanning Booth') and then read a book on air conditioners and installed one - the freaking shop is cooler than the house when he is in there!

But then a dilemma! Since now the lawnmower, bikes and other 'garagey' type items were not worthy to live in his beloved shop - he built a shed - poured the concrete, built the shed complete with two windows - duplicated the siding and shingles to match the house and now we have a wee bitty mini house in our back yard holding all the 'unworthy items'. Not once did it occur to the man that any of this would be beyond his capabilities. And it wasn't.

I vacillate between thinking he is a genius and thinking he is a bona fide freak show - I am pretty sure he is a little of both and I love every bit of each!

So - as I mentioned before I went off on Gary's multitude of talents and savant-like ability to do anything he sets his mind to - he headed out to the garage to 'make a few small boxes'.

That was two months ago.


Just a sprinkling of comments he has said as he wandered in from his shop and passed me lying in bed.

"Since I had everything out - I decided to make a few more sewing boxes - what size should I make them?" To this, being rather well versed in Shaker Box Sizing I said "At least a 10 - you need to make sure that a large pair of scissors will fit in the tray." To which he nodded and wandered off.

"I bought a bunch of Walnut wood today. I would like to mix and match the Sewing Boxes." I readily agreed, then started wondering with all the beautiful combinations - how was I going to pick mine?

"Um, I think I went a bit overboard - I have made a TON of Shaker Boxes in addition to the Sewing Boxes and trays. Everything was out and I couldn't stop myself." To which I told him that I was sure we could find some pour souls to give them to - not to worry ...

"Uh - I made a few more boxes. I am not sure why." I had nothing for that ...

I have not ventured out to his garage and my car for some time - but the other night I went out - for a COMPLETELY DIFFERENT project he was working on (post to follow ...) and took photos.


Sitting atop his main workbench sit just a few of his 'partials' waiting for their master to finish them.

Some of the sewing boxes were clumped together in various states of completion - all beautiful:

Even the trays are unbelievably beautiful:

Each and every one of them is different - maple and walnut, solid maple, solid walnut and various other combinations.

I am a bit partial to the walnut - after he finishes it and gets it shiny smooth - the color is unbelievably beautiful. I realized that I have never seen a box 'in the process' before. Before he makes them beautiful.

Pegs sticking out - waiting to be cut of and gently sanded smooth. Little strays of the ... what? It is a grass - he uses it as a string and 'stitches the boxes' with but I am at a total loss as to what it is called right now ... but I have never - not once seen an errant, stray piece as is showing here. He told me he trims them all off.

I guess I just assumed that they came out perfect the first time ...

This combination is lovely - it is going to be a beauty:

The trays showing their 'toothpick nails'- sitting there all pretty - waiting to be finished ...

The 'stitching' before Gary finishes it. I told him I was going to use this photo since it showed his adorable legs. He had just come back from one out of many sessions with one of the boys he was teaching to swim so that he could pass off that merit badge (Have I mentioned that he is a swim instructor, lifeguard and certified in CPR? Are you really surprised?)

Gary is a generous man - one boy - hours at the pool. He passed him off last week and the boy will be able to now advance with all his requirements on time.

That grassy stuff - before Gary does what ever he does to make the inside pretty:

I am not as generous with Gary's time - I am rather protective of him. I don't think the parents or the boys realize the time commitment Gary puts into his calling. He made each boy a 'Paddle Plaque' for a Court of Honor just a few weeks ago.

He had read about how to transfer a photo to wood. Bought a bundle of mini paddles and started. It was not working out well - when he would peel of the transfer - 8 times out of 10 he lost a piece of the photo with it. He was batting about a 20% success rate - but that didn't bother nor stop him - he took the 'failures' out to his shop and sanded of the bad photo and tried again.

I am not sure how many attempts he made to get one Paddle Plaque for each boy but he printed, transferred, sanded off over and over and over again until he had enough - 50 times comes to mind. He never thought that he wouldn't eventually have enough - but hours and hours and in 15 minutes handed out at a ceremony.

He mentioned the boys liked them, but I am rather sure they do not realize what went into having them sitting there at the Court of Honor. Oh, did I mention that they were awards for surviving the white water rapids on their High Adventure trip this summer that Gary put together - not a Scoutmaster - but helping out a bunch ...

And between sanding paddles he worked on his 'boxes' ...

I was curious about the stitching and the 'un-named' stitching material. He showed me how it came:

And then he soaks it for over 24 hours in glycerin or something. I told him that it DIDN'T look like glycerin but something ... much more unpleasant - he assured me it was glycerin ...

Then I wandered and took a few more shots.

 I liked this one because of all the beautiful patterns in the background:

That 'to die for beautiful' walnut wood again.

You just wait - when this is finish it will be unbelievably beautiful, I have no doubt whatsoever:

A few of the less complete pieces - gently set off to the side - patiently waiting for 'their time' in the masters hands:

A tiny mystery box, sitting dejectedly in the windowsill. I asked Gary about it - he mentioned something was wrong with it. I don't see it, but usually I never do. Gary is EXTREMELY discriminating and any minuscule imperfection will bother him for life - thus everything is fixed or given away so he cannot see it ...

I smiled as I snapped a photo of his burgeoning clamp collection. He always says: "A man can NEVER have too many clamps." And is CONSTANTLY increasing his stash just to make sure he isn't a liar ...

I don't get it ... but I find it one of the most ... endearing traits in him! 

He hoards clamps and routers - it makes me smile and reminds me that he really, truly is ... human ...

A bowl full of his 'toothpick nails'. I told him that it looked like a pain to cut them all.

He said in a semi-exhausted, exaggerated voice: "It takes hours and hours - I hate it."

 Then he smiles and says - "I just cut the entire box in half on the band saw - it takes me ten seconds."

And I smile back ...

And now he is in Korea - mediating meetings and making sure physical violence does not ensue - or some such thing - did I mention that he is a very patient man, can tell people to got to hell, or that they are wrong and never offend, and make sure meetings do not get out of hand. He has GREAT people skills ... surprised yet?


Soon he will be home and back to his 'projects' out in the shop.

One project he needs to get on pretty quick? Those small boxes that hold that Buck knife ... apparently he got so distracted by beautiful sewing boxes that he has not even started on the wee little ones.

Wanna bet me they will be done and ready to go on the date he needs them?


Didn't think so ....