I felt complete peace as I was rolled into pre-op. 30 hrs later I woke up in a very intense amount of pain. Immediately I could tell my head pressure and typical pain was gone. I was only left with surgical pain. Intense surgical pain. It was like I had my skull screwed into… oh wait I did.
I was reading through my journal recently and found this entry. It may seem strange to share now but I think it’s important to show that grief comes unexpectedly and manifests in different ways. I wish I could heal from grief just one time, and have an allotted time period I wouldn’t have to face it again, unfortunately life doesn’t work that way..
I’ve found myself writing a lot again. Hour a day, most the time many more than that. I know, you’re now wondering how I do that with four young boys. I do it with a heck of a lot interruptions!
Life has been thrown upside down for so many in the world. It’s an interesting time. I find I am struggling with it mostly because it postponed my surgery. My long awaited surgery. The one that would be the start of a new adventure. Be able to learn what my new normal would be with the inability to move my head and neck. We were as ready as you can be to take on something like this.
I’m dealing with grief as my main course with some irritability for a side. I know I can’t avoid feeling these heavy emotions in life but I realized this week that I feel burnt out with dealing with these emotions still from my postpartum psychosis.
Through my physical health journey I have had so many wonderful people sincerely check in on me concerned about my mental health. I could honestly say I was good. I had the tools needed this time. The truth, I think, is because I didn’t feel depressed, sad, I was in a place to just take it head on I wouldn’t let my head wander. I just would’t open that can of worms. But now, now, I have those emotions of grief and I cannot push them aside. I’m sure if we could we would push aside these uncomfortable emotions.
Learning self care, or coping mechanisms for dealing with mental health is an uphill battle, or it was for me. I tried daily to do some sort of grounding, which became so difficult to find a new form of these activities with my physical and mental capabilities ever changing. It feeds my grief and frustration at times.
Yet, with all that said, I feel like I am managing my situation to the best of my abilities. Which is all I can ask of myself.
I have conflicting thoughts about you. You were so good to us and yet so hard. I don’t know that anything good comes without hard. If it didn’t come through difficulty would we really experience the pureness of the good?
I’m reading back through my journal. I’m so glad I kept one so detailed through my journey. I came across my struggle of owning my story. It’s funny how sometimes when you look back you don’t remember things to be as hard as they really were.
I wrote this a few days before surgery but never got it posted so here it is, part 5:
I have to say the hospital is quite efficient here. In a matter of a hour I had 5 X-rays, blood, urine, covid, and cat scan done. We then went to a different clinic where we did a MRV scan. It is a 3D mapping of my arteries, and veins. We did see how things had moved with my instability. We gained valuable information through this scan. Turns out my right jugular doesn’t have blood flow basically at all. We hope that the fusion will be enough to unpinch this so I can avoid a jugular decompression.
It is an interesting time we live in. To travel we had to show medical forms every step of the way. Even in Salt Lake City airport. It is not easy currently to leave the country, and I’m not really sure why someone would want to leave without a good reason. Every person traveling was asked why they were traveling.
Traveling was really hard on my body. The pressure change during take off and landing sent shooting pains through my head. Not being able to lay down for so many hours. My head was just too heavy to hold up anymore.
Nothing can go smoothly when it comes to unknown conditions. Especially lots of them, not just one. Conditions that are just recently starting to be studied, looked at.
Even so, things were falling into place. Apartment booked, airplane tickets purchased.
I had no direction from Dr’s. Through hours of research I would find new disorders that would be comorbid to my condition and research those. Each one adding a piece to the puzzle. I’d find out what scans I’d need, blood work, where to go. Call around till I found the place and then contact my family Dr. I’d bring him up to speed on where I was at in my research and he would write the order I needed to travel out of state to get my MRI’s, and CINE scan.
I first learned of Ehlers-Danlos Syndrome (EDS) through a local pioneer in these medical conditions. She paved a way for many. I wouldn’t want to do what she had to do, she has blessed so many who are walking in the dark here.
I’ve wanted to write for so long. The words no longer flow from me. My mind is so confused all the time. Not able to think clearly, make sense of it. The surgeon says around day five post-op my thoughts should become more clear and I should begin to regain my focus again. I’m a former school nerd. I say former because it has been years since I’ve been able to sit and devour a book. My hope is I’ll regain my school nerd status once again.
“There’s no way to be a perfect mother and a million ways to be a good one.”
– Jill Churchill
Mothers Day. It’s a day of reflection for me. It wasn’t always that way. Traumatic experiences seem to change us as a person. For worse, or the better.
As I reflected this year I just was surprised at how far I’ve come as a mother. Through every child I’ve been molded, I’m sure mothers everywhere can relate to that one.