Skip to content

It’s the little things taken for granted.

It’s the little things taken for granted. The past week I have been pretty sick and refused to go to the hospital. The reason why is because for any little thing my primary doctor says go to the emergency room. Even after the xrays and blood work came back great.

Frustration settled in from constant lectures on why I should go. Then having to uproot and go directly to the emergency room via ambulance just to be transported back and given antibiotics the same day for the same thing. Then repeat in two weeks. At what point does the cycle stop?
Well, the green mucus is gone, I never went to the emergency room and my primary doctor would not prescribe antibiotics because she wanted me to go to the emergency room. I’m done.

I told my nurses and my husband that I am not going. If I go unconscious then let me be.
I prayed, I have prayed every night for peace. To help me with the plan and to tell me if I am being selfish or not.
I wrote my husband a letter explaining why I made the decision that I made. I’m tired. I have a bed sore (I really do) and when I tell my doctor you know what she will say? Go to the emergency room.

My plan :
I’m not going to the emergency room
I’m doing my best to tolerate Repositioning, however, it is very painful
I’m at 35,000 in my book
We are calling palliative Monday because the pain is intolerable. So much so that hospice and ending all care sounds peaceful, I would be comfortable and sleeping.
I am praying for guidance.

I’m tired. I feel like everyone except my nurses, cna, husband, boys, respiratory therapist, a couple friends out of state and Morgan from wabi has given up on me.
I feel like I’m dead to everyone else because they don’t know how to man up and face reality.I have tubes coming out of me, I have a machine that breathes for me, I am not mobile and I can’t talk except with a machine. So everything is so uncomfortable and you don’t know how to handle it. They don’t realize what that has done to me emotionally. They give excuses of why they can’t help but did you know all you need to learn is suctioning and giving medication.

The fact that you are here would be a blessing. My boys can only do that and the only thing that stops them from being with me more is their jobs. What is your excuse? I have seen Erika more than anyone in the past four years and she lives in maryland. I’m human too, let’s face the uncomfortable together.
This is what I face everyday. I so want to get out of the house and enjoy the weather but I am in so much pain.

I’m tired of being a job, I miss being a friend, someone that listens and provides guidance. I was that friend that would face uncomfortable moments.

I would be the one in the hospital holding your hand when your family member was dying. I was there rubbing my friends legs in icu and praying for her. Facing the uncomfortable uncertainty of if she would survive the night. I was there for my friends when they were giving birth because they asked me to. I was available all hours of the night when you needed to talk. I was there for my friend when she called me about her mother dying. I was there for my friend who was involved in a shooting.I was there when my friends lost their home in a fire. I was there delivering food, tissues, medication and hugs. I was there.

I’m not looking for recognition or praise, I am wondering if I have the definition of a friend wrong?

My nurses are paid to be my friend. They have become emotionally involved. They are here wiping my eyes when I cry during the day. They put on a smile with hope that my day will be a good one. I allow them to vent and pour their feelings on me. I’m great at listening. I pray for them, my husband and my boys. I pray for patience, understanding and that they don’t get burnt out.

I struggle.
I struggle to get my point across by typing words on the computer with my eyes taking forever to type. So a few things happen, I interrupt the new topic because I am too slow and missed the previous topic. If it’s really important I will play it. If it’s not I delete it and risk being told that I am having a problem, I am mad or making things uncomfortable because I didn’t talk. When in reality I tried but I am too slow to participate.

I’m constantly having to defend myself because I typed shorthand to be quick and immediately got misunderstood because I was not clear enough. I then provide an explanation after a very frustrating conversation where the other person gets upset and angry and I’m crying so my eyes won’t register on the computer. My final response will come hours later because I took the time to carefully explain why. Recapturing the moment and then explaining what I really meant. This could be not important to someone else but it is so important to me. To try and explain the difficulties and struggles hoping that they would understand.

So the plan for now is to try and enjoy what I have. I will do my best not to complain about what I don’t have, all it does is bring me down.
I love,
I love my yogurt dates with David after he has given me my ALS medication Relyvrio.
I love when David reads to me. The past couple of days we have been reading ‘An Orphan’s Tale’ by Pam Jenoff.
I love teaching Daniel new recipes.
I love getting messages from Tyler every day telling me he loves me.
I love when Parker calls just to say hello.
I love Harry Potter night with Grammy

It’s the little things. I try so hard not to take it for granted. I don’t know what tomorrow will bring but I know that today was a good day. I think I have eaten at least five linden truffle chocolates that were sent to me as a gift. They are so delicious. My nails are beautiful from the new gel kit. David painted them and Nicole added hand painted shamrocks to them. My legs are almost due for another waxing that Stephanie did. Finally I get to watch a baby boy grow inside Kaylee. I can’t wait to meet him in September. It’s the little things.

Today was a good day. We will take it one day at a time. An hour at a time, a minute at a time and finally every second of a time. Today I feel pain but the love I received from my husband has helped me get through the pain. 

Today was spent reading, watching ‘ The last of us ‘ and enjoying the company of Tyler. 

This is part of the final chapter in my book. Why give away the end? Well because my story is not just about the end. My story is about the beginning and everything in between. 

Published inALS
Verified by MonsterInsights