Wednesday, May 28, 2014

Stress Paralyzed

Anyone watched Moms' Night Out? Didn't think so...

Anyway, it is about a group of friends who are desperate to break free for a night of fun. A term came up in the movie called, "stress paralyzed". If you are a mom or a human being for that matter, I don't think I need to describe it.

I have taken on this paralysis to a whole new level. I am fully embodying this catatonic state. It started months ago (maybe years) but it went to a whole other level the week before Mother's Day. See previous post...see I couldn't even make it past Wednesday.


That was the start. Then a series of some stupid and some significant events took me in a downward spiral despite trying to see the rainbows and lollipops.
Three traffic tickets, a few rocky relationships, a job on the rocks, and a shattered dream later here I am.

Nope. I am not curled up in a ball in bed (any more). I am a fully-dressed, functioning member of society. For that I am proud.

But truth be told I have shut down to a new degree. It is a defense-mechanism of sorts, perhaps. I have shared and been vulnerable and honest to the core with my journey. In the beginning I wanted to be an open book because I felt my loud mouth would help others who were the quieter and kinder version of me. As time went on, I needed to be an open book. It was my release so I wouldn't be paralyzed in the pain. Well, after the above mentioned happenings and many details that are inappropriate to share (yes, I have a filter) I felt like I might have hit four extremity paraplegia. No writing. No talking. Just going through the motions.

This is the full reason for this post! I can't sit still and let life happen to me anymore.  SO.....

Yesterday, I chose happiness! I woke up and did three hours of "summer school" with the kids. It was so fun. The kids even loved it.

When my husband called to say he would have to cancel our adoption meeting later that afternoon (second
meeting a row he has missed), I chose to too make lemonade out of lemons.
"Let's go to the pool, kids!"

When we went out the door to leave and Amelie fell and screamed bloody murder for 1 hour, I decided rather than recoiling to nap time for the house, I would instead plead the case for the benefits of chlorine water on boo-boos.

After we drove 20 minutes in a car without air-conditioning telling the kids all the way about the best kiddy pool in Missouri only to drive up to a closed Super Splash, I did NOT refused to give up and drove another 45 minutes the opposite direction to the best kiddy pool in Kansas...chanting I can do this, I can do this, the whole way.

Once we finally got to a pool, we enjoyed 3 1/2 hours of playing together in the sun! It was amazing. I found myself smiling more than I had in weeks. It was genuine. No one was watching me. I had no reason for false sentiments. I was happy. So happy that time jumped passed us and I was ecstatic when daddy called and said he could meet us for a post swim pizza.

See it's working! If you just be happy, life is better! I started to feed my brain. My body quickly rejected that notion.

By the time I walked the pruned kiddos to the car, I was starting to get extreme lower back pain. By the time we made it to the restaurant it had radiated to my lower abdomen. A kidney stone? I was starting to see double by the time I made it home. I told Dustin I thought I might have sun poisoning and told him I was getting a shower, would he bring my monitor to me. After checking and re-checking it was confirmed by blood sugar was in the extremely critical high range, over 600. I was so sick by now it was act fast or end up in the ER. Luckily, Dustin should have his Certified Diabetes Education degree and knows how to handle situations like this well. Several, hours later and my blood sugar in a more stable 250 range and still coming down, I was an emotional basket-case.

Just ONE day, I stammered out. Just ONE day having a good day! Is that too much to ask? Diabetes has ROBBED me!! It took parts of childhood, it took relationships, it took my child, and now it is robbing me of my life. I can't do this anymore! I won't!!

As I screamed those words, I had an epiphany. I had blamed so much on me, on others, on circumstances, when the blame should have been directed to what was sitting right in front of me all along in the form of an insulin bottle.
Diabetes is to blame. Fact is I want to ignore it's presence. It's devastation. It's hold on my every breathing moment and it's incredible hold on others in my life the last twenty four years. Maybe, I am over-reacting. It is just another autoimmune disease, right? Millions have them. It may kill me one day but I am living now right? NO! The answer is no I am not living now, because it has already robbed me.

But the destruction is over, Mr. Diabetes! I refuse to let your power over me take one more day. As I sat in bed last night I made a commitment to change. To do different. To do better. No it may not make a difference physically. After all, the best control I have ever had resulted in the death of my daughter. But I will no longer take that guilt on! Instead, I will redirect it to this mal-functioning pancreas and the havoc it has raged on me.

This morning I got up and drank my isotonic tea. I jumped in the car with my chocolate Isolean shake. I have no grand illusions of a new person emerging from the other side when I done with my 30 day cleanse, but I already have a new mindset...and really for now that is all I need!

Tuesday, May 6, 2014

Last Week

Two years ago Mother's Day marks the start of the most tragic and yet most beautiful week of my life. I have felt the need to put pen to paper so to speak so I don't forgot the details of those precious days.

Sunday, Mother's Day 
The warm Kansas air blows through my maternity dress as we enjoy the family time in Ottawa. Dustin and I had debated not leaving mom on Mother's Day but she was adamant we go enjoy grandma and the extended family. We had already had two celebrations both Dustin's step-mom and his mom before leaving for southeast Kansas. The thought was we would spend all evening with mom. Annye agreed to stay and keep an eye on her. She was giving us frequent updates about mom's condition.
"She is acting weird." "She won't wake up much today."
Turn up her oxygen. Let her rest.
My suggestions would haunt me for the next two years.
Around noon a call from my another sister out of town, Audra.
"Hey, sis. I am worried about mom. Something sounds off."
It's okay, Audra. Trust me, I spent all last night with her. She is fine. Sleepy and keeps saying strange things, but I think she is just depressed...
...more haunting words.

We were all on edge and short with one another. We had been for weeks. Normally, us siblings were an united front, but we had been bickering for days with our spouses and each other. We commented on it in a phone call earlier in the week. Our intuitions were on overdrive.

It was early evening around 5ish. We said our goodbyes. "Give Claudette our love!" Dad pulled out shortly after us. We were on the road mere minutes when the phone rang. I heard in her voice. She was nervous. Annye always speaks loudly and over-politely when she is worried. I started to worry too. "She just won't stay awake Alyvia. I think we need to call 911. Should we? I don't know what to do!"

Several minutes later..."They say they to take her to Shawnee Mission. They won't take her to the hospital her docs are at because it's too far away. [it's only 5 more minutes must be bad]
A heart attack?! It didn't add up. Mom had her fair share of issues, but her heart was always strong. She had been like this for days. It couldn't be her heart? Come on Alyvia, you are a nurse. THINK! THINK!

Okay, just stay as close as possible and we will be there as soon as we can.

"Mom, is waving to the neighbors goodbye. She is smiling and waving but the paramedics say she is very sick." My sister's voice is shaking.

We are coming.

Now to get dad's attention who had no phone and no idea of the latest. We pulled over the side of the road, he just a few miles behind us quickly noticed us honking on the side of the road.

It's mom! We need to get to the hospital.

"Give me your phone and you drive." were dad's only words.

This made me very anxious since it had been about 8 years since I drove a five speed, but I wasn't about to tell him that. I killed the car twice trying to pull out on the I-35. Once on the road, little was said, except a prayer. We both agreed we would drive well over the speed limit and explain to a cop if we got pulled over. Then we decided it might take to long to explain so we agreed on 75 MPH.

The phone rang a few minutes later. It was the cardiologist. They want to cath mom, thinking it was a heart attack. Still I was confused. So was dad it wasn't adding up.  Dad gave his consent over the phone since they said mom wasn't with it.

I was shaking. I think I saw dad tearing up. It felt more real than it had in the past. After all, we had gone through similar things for the last 18 months or so. Mom was diagnosed with the vasculitis and we have even discussed hospice the Thanksgiving before last. But I think we all knew then mom wasn't going to die. She still had so much hope. So much life left to give. She ended up moving in with us by that Christmas and was walking and doing great by the end of the winter. By the following winter we thought she was invincible given all she had gone through. Her kidneys had not fared so well and the dialysis along with the steroids and chemo had been brutal on her bones. Fracture after fracture. At least we were finally seeing some hope for a kidney transplant. I always compared her to my patients. Okay if she were one of my dialysis patients in the hospital how bad off would I think she was? About a 6 on a scale of 10. Not bad. I have seen a lot worse patients get a transplant and do great. Am I being irrational? Are biases taking over my medically-trained brain.

I dare not look at dad for fearing of starting to cry. We prayed and drove. FASTER. 80 MPH. I think we made the 90 minute trip in under an hour. As we pulled into the Shawnee Mission ER the sun was setting. I remember thinking it was gorgeous out.

We ran in. Dustin was behind us in the van with the kids. Everyone ran in. By this time more information was provided. Mom's arterial blood gases were horrible. I remember hearing the levels and asking the doc is that even conducive with life? He looked at me and said he had never seen worse and they need to intubate soon. I looked over at mom she was smiling and talking to kiddos. WHAT?!? This is not what someone looks like before intubation. Surely there was some mistake. The doc pulls me into the hall. If we intubate there is strong chance we won't be able to extubate. He looks at me for a knowing glance. I told him I already knew, but he needed to give us the opportunity for her to talk to her children before we intubated after all it was Mother's Day...there are EIGHT kids, doctor. A long pause. A knowing look and a shake of the head. I grab my already almost dead cell and start dialing. Who do I call first? Birth order. Here we go...

Allyson mom is getting intubated. She won't be able to talk with it on. She made never get off it. Do you understand? Allyson she is going to talk to you before she gets intubated okay?

And this is when for the first time I witnessed my mom's love like I had never seen it before. She, struggling to breathe, flushed and exhausted, spoke with love and understanding of each of her children's needs. "Oh, I am fine Allyson. I love you so much. Just fine."

Then Jake.  Reassurance.

Then John. Joking.

Then Audra. Reassurance again. And love to the boys and Stella.

How is she still talking I am thinking? How do I get her to stop talking to each kid? How can I take the phone away? I don't want it to die before she talks to everyone or before she has said what she needs to.

Then Josh. How's Shawna? I sure miss you. (falls asleep)

Mom wake up. We need to call Aryn Lea.

The baby, Aryn Lea. And now she is full on singing songs.

Now, it's Annye and my turn. I leave and let her have time with Annye and her family.

My turn. Mom you don't need to talk, okay. I love you. I know you are tired. They are going to put a tube down your throat and you might not get off it. I won't leave you mom okay...oh and mom, I am naming this baby after you, okay?
Mom perks up. She looks directly at me, "oh, you don't want a baby named Claudette."

I knew then and there we would have a little girl named Claudette.

8:30pm Mother's Day mom was intubated.

In the wee hours of the nights mom's siblings started to arrive. Aunt Candie. Aunt Sherry. I recognized their nervous energy and quickly realized how closely we were all related. Then Uncle Mark. Then Aunt Jeanne and grandma?!? It was almost 1am by now! Then my Aunt Rochelle with my cousin Danielle. I was starting to get upset
Why had they got Rochelle out? She had suffered a stroke years before and the last thing she needed was more stress. But I realized Rochelle needed to be there, she was mom's twin after all. Then my mind went to the story of when Rochelle went to the ER with unexplained abdominal pain the time mom went to the hospital to deliver one of us...yes they were that close. But Danielle too? She needed to be at her daughter, Addi's side. Addi and Conner were her micro-premie twins. Addi was facing insurmountable odds, including almost a year hospital stay, a trach, and now liver cancer. I remember thinking how cool it was both of the twins had daughters pregnant with twins. I, of course, went on to miscarry our twins and now the horrible fate handed to Danielle's babies. It was hard not to think there to be some sort of curse at this point.
As everyone arrived I felt at peace. It was nice having mom's family surrounding us. There we all waited and talked and prayed.
Before sunrise almost all eight of mom's children had almost all arrived. By noon we were all there. In a matter of mere hours every child had managed to get a plane ticket and arrive from Phoenix, Boulder, Atlanta, Moscow, Boise, Des Moines. It was a feat only mom could accomplish. We hadn't been together for years. We decided it had to have been mom and dad's 40 wedding anniversary, but even then we weren't all in the same room because I was in the hospital delivering Henry. He was four years old by now.
By this time mom was in the ICU. Grandma and mom's siblings, except Sherry, left as the hours drifted on; but there we siblings would stay camped out in the small waiting room outside. There were no couches, only a type of love seat with hard wooden arms. Those wooden arms felt like a cushion by 4am. Some would dose off and snore, then others would wake. One of us would take turns sleeping next to mom in the pull out bed. Jake and Audra took on that duty most. The nurses quickly realized by the end of the day we were not going anywhere and offered a small unused room in the back of the ICU.
To this day I don't know what it looks like because I never went to see it. Fact is, I barely got of the chair that Monday. I couldn't bare to see mom like that. I know what intubation looks like. I know what mom looked like. It was too hard. This couldn't be real. If all eight of us were here at the same time what did this mean for mom? My nurse-brain froze and I had a hard time thinking logically.
I texted my friend Hilary. She was the most brilliant nurse I knew and had lots of critical care experience. "Yes, that is normal," she would say. "Ask about this," her reassuring words all the while her taking care of her own patients was amazing. By 8am she was at my side after working all night at a hospital clear across town. This would be the first of so many acts of kindness that carried us like what I can only assume is fireman rescuing one from a tall, burning building.
The next act was from our church. The word church doesn't even capture what I am trying to convey. It was bigger than that. At the time Park Woods consisted of barely 10 families. We had no pastor. We barely had elders. It was a hard time for the body of believers, but the core that stayed was strong and resilient and we saw just how much that week. Monday night a couple of large coolers were delivered: toothbrushes, gum, candy, protein bars, water bottles, snacks, snacks, and more snacks, wet wipes. Anything and everything you might need. It was a godsend, especially for those who had traveled all night and had yet to shower or eat.

No change. She was heavily sedated and going in out of atrial fibrillation. She was in congestive heart failure. We had realized that essentially mom was suffocating for days if not weeks by now. She had been hospitalized a couple of weeks before and the blood gases were horrible then. The pulmonologist at that time thought they must be wrong based on mom's symptoms. I remember him telling me at one point, she would be able to know her own name with these gases, yet she was talking and laughing. However, thinking back on it she was saying such weird things about death and crying a lot. We attributed it to another pneumonia. Turns out my suggestion to turn up mom's oxygen was about as detrimental as any of the acts performed. Mom was taking quick, short breathes to compensate and was essentially hyperventilating. I gave her even more oxygen which effected her CO2 levels and made things even worse. No, I don't think it killed her but I will never forgive myself for not picking up on that.
Why was mom having such a hard time breathing? Well, over the course of the 18 months mom had lost over 100 lbs and over 6 inches of height (if not more). The years of steroids and chemo (she had RA since she was twenty) then the high dose steroids and chemo of late had caused irreplaceable bone loss. Essentially, mom's rib cage was being suffocated by her body. It had caused a pneumonia, CHF, and of course the need for a breathing tube.
Now, the questions started turning in our heads. What would change? How could we fix this? Can we fix this?
Anxiety was mounting.
Conversations ripped across the room. Some were helpful. Some were hurtful. But all the while we never left her side and knew we had to come to some decision.
But what? And how?

Mom was much less sedated now. She was blinking and pointing to things.
She kept pointing at her trach. She hated it. This was in some ways harder. Mom, was now aware of her suffering.
At one point she pointed to a pen and paper. On it she drew at heart. Then she pointed to every single of us.

I will never forget that moment. It was one the most beautiful things I had ever seen!
It was driving her nuts not being able to tell us she loved us (and frankly it was also driving me nuts she couldn't.)
By dinner time we were surprised with famous Oklahoma Joes BBQ from a dear old friend, Deborah. Most of us hadn't seen in her in over 20 years. I know it may seem like just BBQ, but that food at that moment might as well have been a check for a billion dollars.
We ate and laughed and talked with Uncle Brent and Aunt Jan. Audra's best friend from High School, Quion, and her husband showed up. It was such a lovely time. I remember thinking it was the first time I had breathed since Sunday. Looking back on it perhaps God was preparing our bodies and minds for what was to happen the next day...