“I need you to survive. I need you, and you need me were all a part of God’s body stand with me. It is his will that every need is supplied. You are important to me. I need you to survive. I pray for you. You pray for me. I love you. I need you to SURVIVE.” – Hezekiah Walker
My intentions of the way I was going to walk into 2021 did not go as planned. I spent NYE and New Years Day in Critical Care in the hospital. That is the nature of having a CHRONIC ILLNESS. There is no concrete plan that will work for sure. I was supposed to be in some iridescent dress with my love and our closest friends. The “plan” was to take the morning to rest since Infusion the day before tends to knock me out. However, my face started to swell after breakfast, and my throat started to close up. This reaction is so familiar MCAS . This is epi-pen and time to head to the ER. Ironically one of the nurses who was there the last time this happened was there, and she recognized me as one of the most complex cases she has seen. She had never seen some go into anaphylactic shock and had a seizure at the same time. “hi Hayley,”
The last time I was intubated in July, my care plan we created a new care plan. I started infusion therapy to reduce how fast my mast cells are activated to avoid anaphylactic intubations plus the two epi-pen system inject wait 15 mins and another dose. Down side I also have some cardiological issues, which means my blood pressure can drop during anaphylactic reaction. or my heart rate spikes way to fast with the artificial adrenaline , meaning I have a higher chance of going into cardiac arrest. The Dr. was agitated because the nurses were not moving fast enough, and we watched my oxygen levels drop and I started to feel cold and euphoric . He had to ” borrow our extra epi-pen so he could intubate before things got any worse. So here I was being intubated on a ventilator 3 weeks post-op for a neck and shoulder decompression surgery.
They asked Bryan to leave the room so he could not see the procedure. I just waved goodbye. If you know me, you know how comfortable I am with death. I am not afraid if it is my time. I have written my gratitude letters and had variations of goodbye conversations with friends I’m sure some wouldn’t even realize it till later .I intentionally did this Just in case I no longer want to keep fighting, or my body can no longer handle the fight. I am okay if It is my time to meet the Lord. I did the best I could with the cards he dealt me. Some people think this is morbid, but I am tired of living in the body that hates me. That has given me so much loss, grief, and at times made my life isolating.
I don’t know how many times I have said Goodbye internally to the people I love every time I have been put under for surgery or intubation. This is the reality and the fragility of my life or anyone’s life. We never know when my Mast cells will react and how fast I am going to get care. I have become that friend who has to ask “what’s on the menu before I agree to be there”. Food is become something I worry about I’ve been on a cornflakes and ginger tea for a month because so far these are “safe” foods. Chronically illnesses never come as one diagnosis they came with multiple plus ones. So here I am healing from an intubated Then you add the physical pain of CRPS and FND. How much can one physically human take? I am fighting with my body to survive. I am fighting to stay alive , I’m fighting for my sanity in this medical mess and have some normalcy of a life ,BUT this is not normal; this is NOT FAIR. I do not DESERVE this, and I don’t believe that this is my FAULT. This is the body and the journey that God decided this was my fate, and only he can answer those for me, oh and trust me Its the top of my list to ask him when we meet because 🙄🤪
I was angry today at the world, to be quite frank. I have been on steroids, and for me, they give me the two-week bloat possibly pregnant looking belly, and I loathe it. 1) because based on my body’s ups and downs, we have been advised that trying for a family with a body that is in distress would not be easy. 2) there are days I can barely take care of myself, and bringing someone into the world who is completely dependent on me would not be fair. Another thing I have to put off / that is hindering my dream to be a mother . These are things that spin in my head all the time and have to pray for the strength of resilience and come out the the other side with grace.
So I was /and overwhelmed today, and I complained to my husband cried and shared how dark things felt today. I didn’t / don’t have the reserves in my faith and positivity tank today . So he sat next to me with 5 Ice packs in different places and we cried together. I cried for myself , for having him go through this with me and for us as husband and I wife . This might be because tomorrow ( when you’re reading this it’s already 01/04 this is our actual wedding anniversary where we walked into a courthouse and got married by a guy in ninja turtle pajamas and bed head. I’m writing this, and the irony is my body is so swollen my wedding bands don’t fit. I’m in post-op pain, but I can’t take anything until my immune system does not decide to reject the opioid medication. My anti-inflammatory medication interacts with the steroids. So I’m in survival mode, Every little breath is painful a reminder of a new trauma. I rock back and forth I can’t do this anymore.
I sat with this disdain and self-pity for half, the day pray I decided to pray but I could NOT, so I opted to listen to my Gospel Playlist, and the song I need you to survive by Hezekiah Walker came on as the second song that came on, and then it clicked. It is okay that I have bad days, and today I am just surviving. I do not have a plan for tomorrow; I just need to make it today and let it be his will. The 4th song was This too shall pass by Yolanda Adams, and as I write this, it’s 1:05. It is our Wedding and Diagnosis Anniversary. We know not to put all of our faith in humans because we all are faulty and not perfect, but today Scoot, you are the reason I am surviving today, and that’s all I can do. This is marriage sometimes I can’t show up with my 💯 to your 💯 but you carry me for both of us . We are not perfect but no one on this earth can say we haven’t been to hell and back together . Now I’m going to play our song Mamela by Micasa. The video and song are the epitome of us and our struggle.
Our Story In Song – MiCasa Mamela