HOORAY for Nicotine!

Not. Joking.

While the demon known as Myasthenia Gravis has been trying to suck the quality of life out of my Dad, we found something that is able to subdue it: Nicotine. Specifically the Nicotine patch.

Crazy right? Especially since my Dad stopped smoking, cold turkey, 40-some years ago.

Seventeen days ago my Dad could barely talk, breathe and had the negligible energy to walk between the bathroom and his recliner.

Seventeen days ago, from a suggestion they received from someone with an autoimmune disease also, my stepmom bought a store brand box of Nicotine patches, of the lowest dose, and stuck one on my Dad.

Unbelievably, and thankfully, it is working!

People trying to quit smoking typically start Nicotine therapy at the highest dose and gradually step down until they, hopefully, give up smoking for good. My Dad started at the lowest dose and has since moved up to the next higher dose and the improvement in him is, dare I say, miraculous?

Until the past few days, my Dad had not driven a vehicle or tractor in more than a year and his tool belt has hung, neglected, on the hook inside his workshop. Since wearing the Nicotine patch, not only has he been able to drive, two days ago he also tore down the engine in a go-kart, identified the problem, and FIXED it.

How this is working:

Myasthenia Gravis is attacking my Dad's immune system, causing a disconnect between impulses between thinking about doing something, "I want to lift my hand", and doing, which is, lift my hand. The Nicotine patch is giving the life-sucking creatures something else to devour instead. Kind of like Pac-Man.

So, YES, in this case, NICOTINE IS A BADASS (in a GOOD way)!

Seventeen Days Ago

I wrote this post about my Dad seventeen days ago yet, for whatever reason, didn't publish it. Here it is now.

-------
This past Friday (July 6, 2018) I was able to spend some one-on-one time with my Dad while my stepmom was visiting the neighbors down the hill. It's the first time he and I have been alone together outside of a hospital setting and I was finally able to tell him that I, too, am having a hard time dealing with his illness.

I could feel tears burning behind my eyes as I said those words and it took everything in me to hold back the downpour as I told him, "Dad, I just can't imagine my life without you in it." As he dabbed at his own eyes ("they've been watering a lot lately" he mumbled) he reminded me that everyone dies sometime and that "this will probably kill me".

"I know, Dad, that's the natural order of things...still...unlike ALS, you won't die from this [myasthenia gravis], yet I'm watching it suck the life out of you." He went on to say that he "wants to see 80, then I'm good."

My Dad will be 78 years old in September. He has outlived his brother, two sisters, his mom and dad and his first-born son.

Watching my Dad lose his independence - it's hell and seeing him depend on others for things he used to do for himself is heartbreaking.

False Negative

Approximately two months ago I had and "in-home" sleep study - which consisted of only a pulse oximeter attached to one of my fingers to monitor any drop in oxygen saturation. Not. Joking. Of course the result of that was negative. A false negative, which wasn't surprising. This is not an accurate measurement for sleep apnea, snoring, restless legs (in my case, restless body) or sleep talking, yet the insurance companies want to waste your time by doing something so simplistic (and wholly inaccurate). My guess is the insurance companies know this particular test is not indicative of, well, anything, and probably hope that a "negative" result will satisfy the physicians and patients and to not pursue further testing.

Not. This. Chica.

Having worked with one of the top physicians in sleep medicine, I learned a lot. Not only did I learn a lot from her, my current PCP and I have exhausted many other possible causes trying to figure out why I feel so tired and fatigued all the time so she ordered another sleep study.

I had hoped that the repeat parathyroidectomy would alleviate a lot of my symptoms - especially the depression - and am disappointed that, 6 months later, I still feel like crap.

On May 29th I had an "in-lab" sleep study where I spent the night in a sleep center wired from head to toe for sleep stages (multiple connections all over my scalp), sound and video recording, muscle movements (multiple connections to arms, legs and body), in addition to a pulse oximeter.

It was the. Night. From. Hell. I had a severely restless body so everytime I would settle and start to doze, my body would twitch, limbs would fly, and I flopped around on the bed. I eventually dozed off - then woke myself up because I was snoring so loud. The cycle continued.

Not surprising, the results came back that I do indeed have sleep apnea. (Ya don't say!?) Next week I will have a CPAP titration study (hooked up to a CPAP machine to determine the correct mask and settings to eliminate the apnea) and, like my dad, be a CPAPer.

Strangely, I am looking forward to this next test and have HIGH hopes that, like my dad, I will feel so much better!

Rainfalls

I surprised my dad yesterday afternoon when I strolled into the infusion center carrying a piece of pie. I cashed in some personal time, for yesterday and today, in order to see my dad as much as I can before they leave for Florida. He is waiting for his doctor to give him the go ahead so they can get away from the snow and cold. They are hoping to leave on Sunday.

My dad started to cry when he told me how depressed he feels and that he is hoping by finishing out the winter in the Florida sunshine will boost his mood.

Seeing my dad cry is gut wrenching, at best, and when the tears in his eyes overflowed down his cheeks I wanted to cry right along with him.

Muscles and Movement

I spent some time with my dad this past weekend and I am in pure disbelief at how quickly Myasthenia Gravis has grabbed hold of him. When I first found out about his diagnosis, and knowing nothing at all about it, I went to the internet to read up on it. The majority of the white papers and clinical studies I found indicated it was not a terminal disease.

I beg to differ.

Over the past seven months I have watched my 6'4" dad lose his ability to walk unassisted. His eyesight has reached a point where he is having to set aside one of his beloved hobbies: reading James Patterson novels. He has been unable to drive and has not driven a vehicle in more than a year.

This last weekend I noticed that while he is talking his face would become bright red. Bright crimson red. I found out that, because it takes so much of what energy he does have, his ability and effort to carry on a simple conversation uses all his strength.

While my dad was talking with me about the effect MG is having on his eyesight, my step mom, who was sitting off to the side where my dad could not see her, mouthed the word '♥' as she pointed to her own chest.

I am not quite sure what the meant by that gesture and I dont think I want to know.

Annie!

Thrilling!

My dad called me a few moments ago and, when I answered my phone, he said, "Hey, Annie!"

While most people may not understand the significance of that term of endearment, it means everything to me. Especially now.

For as long as I can remember, rarely has my dad addressed me by my birth name - that is until last summer/fall - I have always been "Annie". So tonight, being addressed as Annie by him is significant to me for two reasons. First, it is the name he has always used for me and, secondly, he hasn't sounded more like his old self than he did in that moment.

Welcome back, Dad.

Love, Annie

Working Late

My usual working schedule is from 8:00 am to 4:30 pm. This past Thursday, I didn't leave my office until almost 5:00 pm, then took the elevator to the 1st floor in order to make a stop at my eye doctor's office to order contacts for me to try. When I left that office, instead of taking the elevator back to the floor I worked on and using the Skywalk to cross the street for the cafeteria and parking ramp, I decided a walk would do me good and set out on foot down to the pedestrian crossing. My plan was to pick up No-Bake cookies in the cafeteria, which is located across the street from my office, and in the direction I was headed.

Now, I have a habit of talking with patients as I pass by commenting on flowers they have in their hand, their pretty hat, saying hello or asking if I can help when they appear to be lost. Today would be no different, I thought to myself, the patient pick-up area was jammed up, and I continued on.

As I walked into the patient pick-up area, where the only entrance to the hospital is, I saw a patient, about 50 feet in front of me, in a wheelchair holding a pot of beautiful fall colored flowers. I was about to comment on the beautiful flowers when my eyes drifted to the patient's face and stopped me dead in my tracks. 

I could NOT believe what I was seeing. 

My heart was flooded with every emotion known to humans, yet I didn't know if I should be angry or concerned, happy or sad, and whether or not I should hug him. Thankfully, neither he nor the hospital staff person sitting next to him had looked my way.

I. Just. Stood. There.

The man sitting there was someone I have loved and looked up to all of my life; and someone who has loved me all of mine.

Within about 20 seconds, I had pulled myself together and walked toward him. Standing in front of him I said, with more sarcasm than intended, "So, I have to come to the hospital to see you?" 

Although he knew I worked at that hospital, there was no way I could have known he was there. For 11 days.

ELEVEN FUCKING DAYS.

For 11 days I had been passing through the hospital when arriving to work, during lunch, for Starbuck's coffee, and again at the end of the day. For ELEVEN days I had been passing through the building with no idea my dad was a patient there.

----------------------------------

The egg donor and vessel prior to my birth, has two sons and a second daughter that, like the egg donor, I will never acknowledge again as long as I live. The one son is in the medical arena like I am and, as my dad, his wife and I discovered, thinks HIPPA doesn't count for members of his immediate family, and should have been booted from his job when he looked into my dad's chart a few years ago.

I, on the other hand, take HIPPA VERY VERY seriously. Not only would it be an invasion of a patient's privacy, I WOULD BE FIRED from my job immediately upon discovery of the breech. In every medical assistant position I have held, I have come into contact with family and friends. If I am the person putting one of those types of patients into a room to take vital signs, go over medication lists and past histories, I go ONLY into places within the chart that I need in order to do the job at hand. If one of these types of patients request refills on medications, ask for lab results, etc., I ask a different medical assistant to fulfill the patient's requests.*

------------------------------

Yet neither he nor his wife had bothered to let me know. Seriously?

SERIOUSLY!?

He didn't even address me in his usual way - and THAT hurt like a BITCH.

The hospital staff person sitting next to him said, "He has been my favorite patient!" Then I looked at him and said, "Well, he's not my favorite...

D A D

right now."

"Well..", he started, "I didn't think.." I cut him off, "I still love you, Dad, that won't ever change" and I bent over and kissed his cheek, noticing the infusion port that had been inserted into his neck.

I asked him why he was there and he told me it was for his fifth plasma exchange; he had already had four of them.

He told me he had been diagnosed this past July with Myasthenia Gravis and suddenly I couldn't breathe. The hospital staff person noticed his wife had pulled into the patient pick-up area and I turned my head to look. Even across the distance between us I could see her clenched jaw and the disgusted look on her face.

As I helped my dad into the car, I made a point - a very LOUD point - so she could hear my words clearly - that I have (and had) absolutely NO way of knowing he was in the hospital unless HE told me.** As much as I wanted to return the scowl and point those words directly at HER, I found that I couldn't even look at her. As the hurt began to rise inside of me, the woman I had loved and found guidance in over the years was now a stranger to me. She couldn't even bring herself to say hello.

I reminded my dad that I didn't live far from the hospital and that he should stop over. "Yeah, I'll do that", he said, in the tone of voice, that over the years I had learned was fake and hollow. I wanted to ask him if he would like to right now, but he reached out to close the car door before I could drag the words out of my head and onto my tongue. 

The conversation was over.

As his wife put the car into gear, I turned around and walked away. I couldn't watch them drive away because, before I had reached the entrance to the hospital, I was already crying. I sat down on the first chair I could find, turned away from all the hustle and bustle of patients, people and staff, and sobbed.

"Why would they do that to me?!" I asked myself over and over. "How could they NOT tell me?!" 

The pain was unbearable.

While were still waiting on the sidewalk for his wife to arrive I had reminded him that I have tried twice to see him this summer. "Yeah...well...we've been busy..."

"Apparently," I replied. Sounding just as hollow and fake as he did.

When they returned from their winter house, I had sent numerous texts to HIS phone about genealogy and such and the replies I received had come from his wife. It isn't hard to tell which person they came from; their styles and wording are completely different.

My dad's responses come with no capitalization, no periods, and are usually confusing because, for some reason, he skips words, shortens them, or misspells them altogether. Although the first time, a few years ago after he bought a REAL phone, he added LOL in a text to me - I was the one who burst out laughing. My 70-ish dad was learning the acronyms of texting.

I have no idea how long I sat in that chair crying and it was hard to pull myself together. It was obvious that I was employed by the hospital due to the scrubs I was wearing and I didn't think it very professional to walk through the hospital crying like a baby.

When I finally stood up and walked toward the cafeteria, the original reason why I had varied enormously from my normal routine, to find No-Bake cookies. As I was standing in front of the cookies I started crying again - and not because there were no No-Bake cookies left - I was feeling childish for everything that had transpired between my dad, his wife and me last fall/winter.

I finally settled on an entree in a to-go box and stepped in line for purchase where I also started crying all over again. I gave up on holding the emotions in. I cried all the way home.

By pure coincidence, by varying from my usual routine, and wanting to feed my desire for No-Bake cookies, I had seen my dad for the first time in almost a year.

I cried myself to sleep.

* When I started working in my current position at the hospital I was fortunate enough to be "trained" by a very unhappy, evil, bitch of a woman. During 4 weeks or so of training I was logged into my own profile, on HER computer. 

One day, the manager asked to speak with me privately in her office. After we sat down in her office she asked me if I had looked at my own chart. That answer was easy and truthful, "Never!" She went on to say that security had notified her of this and before she assumed I was guilty she wanted to talk with me first.

I told her I knew the consequences of such an action and NEVER in a lifetime would I do that. She took my word for it and the issue was settled with security.

It wasn't until several days later, when the woman who was training me, said something to another employee, that it clicked: SHE was the person who had been in my chart while it was logged in under my name and forgot to secure when I walked away from my desk.

I never said anything to my manager about it and now lock my computer without fail when I am not sitting in front of it.

The evil woman retired not long after that.

** I am fairly certain my dad's wife thought I had been in my dad's chart and discovered he was there.

An Invitation

I have made the decision that I will no longer just drop-in like I have done so many times over the yeard, if my Dad wishes to see me he will have to extend an invitation. Including Father's Day.

That is all.

The Voice (November 2016)

I talked with my dad a few minutes ago and as I had suspected he had no idea what had transpired between Kay and me earlier in the week. I told him about sleeping in my car at the farm and he was fine with it and said that sometimes people just need their space. I told him the stars were magnificent.  He did tell me I should have told someone where I went. The thing is, until I actually wound up there, I wasn't exactly sure where i was going. 

I didn''t sleep well at all. Not because of the bed arrangement, it was because looking up at the stars I realized how insignificant we are.  Not just me; all of us.  At the end of the day, nothing really mattered at all. (Waking up to Jack's deep baritone voice yelling my name didn''t help matters any either.)

Don't Be Ugly

I hate my mother.

I HATE my mother.

I hate MY mother.

I hate my MOTHER.

Every time I think that statement or say that statement out loud I can hear my beloved Grandmother's southern drawl, "Now, Carrie Denise, don't be ugly, that's your mother."

Forgive me, Grandmother, because I DO hate her. With every cell of my being, I hate that woman.

I wish you were here right now, Grandmother. So we could have one of our long talks – and I could ask you questions about things I've learned recently in regards to my mother and father. I would also have to tell you how hurt I am that, in all the talks we had over the years, you knew so much more.

I need to know why you withheld all of the horrible things about my mother from me. Grandmother, you saw how I struggled with the violence, we talked about it all the time. You and I – together – tried to figure out why my dad was like that when, all along, you knew. Grandmother, YOU KNEW why.

You KNEW it was my mother who put him into impossible situations.  It was because she didn't take care of us kids, or the house, or cook - you name it - she didn't do ANYTHING!  My dad worked his ASS off to provide for his family. She did NOTHING! It was every kid for himself – and she left everything for my dad to handle when he got home from work. From fixing dinner, to punishing whichever kid needed it at the time, that was what greeted him every night when he walked in the door.

(I am NOT, by any means, providing justification for how angry and violent my dad could be with my brothers. I do however understand how my mother kept him constantly stirred up to always, ALWAYS be the bad guy.)

I know you loved my mother "like a daughter".  She thought the world of you too. Why were you keeping her secrets? She was just like HER mother.

How many times were you, or one of my Aunts, called out to our house to take care of us kids when my mother took off on one of her whoring adventures again? Who took care of us so my dad could go to work and earn money to keep a roof over our heads?

Grandmother, how many times were you witness to any of us being locked out of the house by my mother? I know you and Aunt Peggy showed up one day, Jimmy was the only child at the time, and he was throwing rocks at the door trying to break INTO the house because my mother had locked him out.

The funny stories about Jimmy painting a stripe down the side of my parents brand new car and putting rocks in the gas tank of the lawnmower as well as the story of the three boys burning the horse barn down, really weren't "funny", were they?  These things probably happened on what was my mother's watch – except she wasn't watching, was she?

She filled my head with so many lies not only about her marriage to my dad, but also about my dad. She had me believing she was a victim of an abusive marriage, that my dad still (to THIS day) owes her child support arrearages AND he still owes her money from the sale of the house that SHE only lived in for ~1 year.

Everything she told me that day while sitting at MY table, in MY peach-colored kitchen, while looking me in the eye, was complete and utter bullshit.

My dad wasn’t able to have/keep friends because she cheated on him with several men in our community. She even slept with a deacon at our church, which explains why we suddenly stopped attending. Although I only remember her being in a psych hospital once, she had actually checked herself in twice, both times because my dad caught her cheating.

There is so very much more to write about all the things I now know about my mother, and how what she did so deeply wounded my dad and, as much as I dislike them, my brothers too.

At least now I know why she refuses to believe me about my brothers; it happened on HER watch and she wasn’t paying attention.

At the end of the day though, she just doesn’t give a fuck. She never did. I suppose I always knew that; now I have proof.

Another F*cked Up May

It feels as though I am in a constant state of turbulent emotions. For example, my birthday and Mother's Day were four days apart this year and I know, with absolute certainty, that my boys will NOT be calling to wish me a "Happy Birthday" nor will they be calling to wish me a "Happy Mother's Day".

First of all my kids have no idea when my birthday actually is, even though I'm on FB, where Connor and Matthew can plainly see it. Secondly, when Connor was in preschool/elementary school all his handmade gifts went to stepmom, and that set a precedent that still stands to this day. Not once - NOT ONCE - in 22 years have I received acknowledgement of any kind from Connor. Nada. Zero.  I couldn't even get his dad to automatically order school pictures for me (I would reimburse him when they were delivered), so I have no school pictures of Connor. No senior pictures. Nothing.

Matthew and Hunter, on the other hand, during the years they lived with me, I received their art projects for Mother's Day. Once Matthew moved to his dad's, at age 5, all that stopped. Hunter stopped when he moved to his dad's house.

Am I bitter? No. Hurt? You betcha. I played by the fucking rules where my kids were concerned by never speaking ill of their dads. (Although I had a LOT to say about Connor's and Hunter's dad. I still do.)

So, my birthday, followed four days later with Mother's Day, followed four days later with the 17th anniversary of the beginning of the HCA and I have a gun loaded, safety off, cocked and resting snugly underneath my chin.

All of the above doesn't even take into consideration how close I came to losing my dad at the end of March.

70

years ago today my Dad was born. How awesome is that?!

Celebrations!

Last Wednesday, Hunter started Junior High School and 7th grade. So far his year is starting off very well and I have received only two phone calls from the school.

The first call was from the school social worker letting me know that Hunter had been chosen to take a special MEAP test this fall. The second was to tell me that Hunter and another child ran into each other in gym and Hunter scraped his shin and needed ice.

WHEW!

Today is my dad's 69th birthday. Happy Birthday, Dad! (Even though you have no idea this blog exists!)

Wasn't

Thought

Professional

Uncertainty

Is

What

?

Midnight

Swirling
sea
uncertainty
pieces
life
unravel
around me

Overwhelming
thoughts
emotions
overstimulated
paralyzed

Universe
way
out
order
rearranged
somewhere
between
dark
darkness

I struggle to breathe