I’m sitting here in our new home … the blog I am writing has laid heavily on me since we decided to buy a home. The process of it is not anyone’s business but I felt I had to pour my heart out to people on Facebook due to some disgusting comments made about me and home ownership basically a year after needing a heart or liver transplant … basically people thought I used my health problems to get people to buy me a house … if it were that easy my parents would live in a mansion, drive expensive brand new cars, and I’d have owned a home around 18 years old … not 35! This is my house, regardless of what anyone’s says and I am in love with it … it’s become the child we don’t have yet, constantly we are in awe of this accomplishment and well literally I’ve spent a few weeks without internet (we are using our phones as hubs as the company we want to use is trying to figure out things since we are a new home build) and hoping to have cable TV soon!
I’ve had a lot of time to think!
I didn’t want my first blog back to be a review blog, because I have had such personal stuff going through my brain that I need to put it on paper or at least on the internet!
I have had comments made that people can’t believe we bought a two story home, when well I have not been walking for not even a year, it’s only been 8 months without a walker, 7 months without a cane, and less than 6 months and I’m still a wobbly mess who can’t climb stairs that well!
As if my life story didn’t tell you that I never give up or quit, why wouldn’t I have stairs in my home? Stairs are a part of life, and one day I will giggle as I jog up them or down them! I know what it’s like to have those things one day, and wake up unable to do them the next …
I have thought about a lot of things, mostly because Facebook Memories is reminding me of them, and it’s still fresh in my mind, maybe next year I won’t reflect so much but year ago I had a tracheotomy and didn’t know who I was when I was awake, or who my family, or Andy was. They pumped so much medication in me, that they looked different, in my mind! I was in a state of limbo for weeks! I honestly thought decades had passed and that every time I woke up, it was another ten years later and they just kept replacing my heart and liver. I didn’t know why I couldn’t remember going home or having a life in between these periods, who knows what your mind tells your body so you can fight and survive!
I just know one day I woke up and was lucid enough to realize I couldn’t move my hands or feet and I surely couldn’t lift my legs or arms. I was terrified, and why couldn’t I talk but most of all why was this disgusting thing over my neck blowing air on me. It was the worst feeling ever, and that is when I was told I had a trach, and my arms and legs didn’t work. I don’t remember who told me, or what they said exactly, or if I cried. I just remember I was shocked I had only lived this one time, it was still 2016, it was only weeks later rather than decades, and I resolved this is how it was going to be. I was going to live in a hospital for whatever time I had left, and this would be my life. A life of no movements and silence.
If you know me personally, your eyes might be full of tears, as this has always been my worst fear and I was living it! I was seriously paralyzed, and couldn’t talk. I knew I believed in God but if He was trying to teach me something, the Heavens better open up and speak because I was losing faith and trust in Him. I remember telling Him if this was my plan, why would we have done this whole transplant thing, why didn’t He let me go with the first decision of compassionate care? What was this? Why was this happening?
I will never forget the first day I realized physical therapy was there, I wanted to slap them. I guess I wasn’t really lucid all the other days because this day they decided to put on music!
I didn’t want music, I wanted to talk, I love to talk, music is my private way of dealing with things. Songs have meaning to me, that I would never share with others, and I like to zone out alone and listen to music. I did this for a few hours before my transplant with my family around me, half asleep as I silently wept for them and memorized what I could about their faces. I will never forget the first song that came on in physical therapy that day …
Adele’s “Hello” and I lost it! This was the song I told Andy to play if I died … play it loud and sing it! It was my calling to him from Heaven, and I wanted him to know I was always going to be there saying “hello” while he was remembering me!
I cried so hard, the therapist Claire said “who doesn’t love Adele” and I wanted to scream at her, this was my death song, I didn’t die … I wasn’t calling Andy, I was searching for him … and while he was there … in my mind it wasn’t him … now I have to tell you all why I thought this was … well I had horrible reactions to the medications and hallucinations which happen after traumatic surgeries like this when medication is introduced to a body that is dying and now living … so when he’d be standing there my mind was hallucinating that it wasn’t him … it was some replacement my parent’s had paid to be there … my mom and dad and even Andy laugh now but this was terrifying for me. I thought he had left me, and in my mind I was contemplating a life without him, I was missing someone who was right there and a few times I screamed at this “stranger” to leave, scarring him for life! This is why this song, broke me, because where was Andy, why wasn’t Andy here with me, why did everyone leave me? I couldn’t compose myself, the words kept playing in my head even when they turned the phone off … I barely did anything that day, but the feeling I had will never leave me! I wanted silence but since no one could understand me, music was played and I can’t even listen to those songs anymore … at least “Hello” is now my power ballad when I want to cry about how Andy will forever be changed by this surgery … and experience …
I came to the realization that eventually I would talk again, eat again (people don’t realize that I went two months without food, I had TPN which is a nutritional supplement but I couldn’t eat anything), but I did not expect to walk again at least without assistance! I was forced to do a lot after my hernia repair and it would take two physical therapists to basically carry me where they wanted me to be. I will never forget my first stay in physical rehabilitation when they said I could walk 12 steps without assistance. I could not even stand up by myself, those 12 steps were when I was put on a machine and pushed the whole way as I cried in pain! My parents would leave during my physical therapy, parts of me wished they hadn’t as I needed them, and parts of me understand why they did. Andy would participate later, by sitting with me or learning how to help me, but so did my mom and dad as they would help me shower alone (mom) and go the bathroom without someone standing over me which was my first taste of independence!
The first week of physical rehabilitation was overshadowed by the fact I had pneumonia, and I couldn’t do everything they wanted me to do! Yet, I will never forget the first time I stood up! Brittany who was my physical therapist worked with me for hours before we tried that first stand. I’d move my feet, pretend to walk from my wheelchair, and do all types of other exercises. My arms regained their strength quickly but Jess my occupational therapist had me doing things like folding clothes (I cried while doing that, as I never thought I’d be happy to see a pile of “laundry” again), putting pills in cases which would prove needed later on as I learned to do this weekly, and using small hand weights every day!
The first time I stood up I remember feeling everything on fire! I’m not talking about the times I was dragged to the standing position by the physical therapists in the hospital, I’m talking about the time I put all my weight on my legs. I wanted to scream, I will never forget being so embarrassed about the loud grunt I did because that was all I could do besides scream! No one seemed to notice or care, I stood for 10 seconds and it was the greatest feeling in the world. I could win the lottery today and never feel that way again! The pressure on my legs was extreme, everything hurt, I was pushing fear and pain to the side in a major way, and I was doing it without help. I will never forget the countdown to 10 seemed like it took 10 minutes, and I refused to drop until we got to 10, but on 10.1 I dropped and sighed as loud as I could. I sat there for a minute in all glory, until she said “Erin, we are doing it again” and I went from being on top of the world to the bottom really quickly!
There were so many of these moments, one was when I had accepted death as my fate! I was really just waiting to die, and for a few days I think I must have expressed this because when Dr. McLean came in … I had, had it! I knew I was dying, and no one would tell me different but her! She was calm, which is what I needed during that time, I have so much respect for medical professionals who can be cool as a cucumber when their patient is irrational. I’m sorry, I’m going to say this and I think I can after having lifelong experience as a patient, we can be irrational! I think fighting for our lives, has given us the right to not always act reserved, or hold things in, or be confused because medical information is overloading especially when it has to be learned or accepted in a short time. Irrational instead of combative is honestly what happens to me, when I get combative I have had it and it happened a few times in this whole journey. People see the “Erin” I post on Facebook, no one sees the woman rolling around in the bed in pain because the doctors decided to not diuresis her but refuses to give her pain medication and who screams at the doctor who has no ability to realize that their years of medical experience do not mean anything to me at this moment. It’s my life that I could lose, and I don’t care how many patients you’ve pulled the white sheet over, this is my body and I refuse to lose it because you aren’t able to explain to me what you are doing! Or the doctor who you trust with your life until they threaten hospice care if you don’t play by their rules and who has no problem a year later reminding you that they aren’t treating your mind, only your body. I want to point something out to medical professionals reading this, you may work on the body but I beg you in the process to try to not destroy the mind. It’s fragile, and while you can put tools in and out of the body and it can bounce back, the words you say cannot be taken back. Your half-hearted “apology” will always stand in the way of your medical knowledge if you don’t realize this patient has a choice in whether you treat them or not, and it’s a lot harder to hand your body over again and again with the hopes to be saved than you ever will realize.
Dr. McLean is not this type of doctor, she’s a strong woman! I admire her so much, because while she comes across strong and solid, she’s gentle when she needs to be and that day I needed her to be the gentle giant she is! She stood over my bed, holding my hand, and I literally was just wailing that I was dying and it was okay. I had accepted it and she basically did not let me finish. She said “Erin, I see people daily who are going to die and you are not going to die! I promise you, you aren’t going to die!” She left it at that, I couldn’t walk but I wasn’t going to die! It was final, a doctor who I trusted said I was going to live! I was going to live! I know she didn’t know if her words were true, or if I would put all of my soul into getting better from that moment on, but her works were like the spark that my “flame” needed to ignite!
The first time Andy saw me walk, I had walked 100 steps by now, back and forth every day! My mom had seen this, and so had my dad, and I’m not sure if they cried when they saw it, but I remember a twinkle! I am sure they cried a lot in private! I know I did, along without caring who saw too! While I was walking sometimes I would have a flashback and cry, I would remember something and cry, sometimes that happens now! I have learned my body is holding in a lot of pain and sometimes I need to let it out without fear! The first time Andy saw me walk, he cheered, clapped, and was smiling so big. Yet, I know my Andy and he whispered to me he had to go to the bathroom, and when he came back I knew he had taken a moment to himself. When he first watched me go up the stairs at rehab, he cried. I spun at the top like I was Cinderella at the ball and when I looked down he was wiping his eyes. He will never explain what being there did to him, and while I know it took from him … I also can see he’s gained so much from it. He watched me survive something that could have killed most, he watched me wake up from surgery months later, confused and unable to speak, and he watched me learn to live again! Walking again has taught me so many things, the first is that nothing is going to go as planned and even if it takes you years to get where you are going … don’t stop because you still have the chance to get there!
I'm Erin and I am the "Lady in the Home" in fact this name stems from being the only lady in my home. I have a wonderful husband and an amazing dog named Zeus. We are currently in the process of purchasing our first home, which we built. My blog documents my life in the home, as a college student, and lover of so many things. I had a heart and liver transplant Valentine's Day weekend in 2016, and so I also write about my recovery from that. I love to give my opinion about different things pertaining to our new home and if you work for a company that would like to be featured on this blog please email:
erinmriha (at) gmail (dot) com