I have exactly one week until surgery. My little brain surgery seems so insignificant in all the stuff that is happening in our world right now. I am scared for our world, our future. I am scared for my world, my future. I am scared for my daughter’s world, her future.
I’m sure those of you that have had a surgery recently never thought you would have a surgery during a pandemic. Well, I first never thought I would have brain surgery for chiari malformation. Growing up as a diabetic, I was never told that this was something that could happen to me because of my diabetes. I was told I would go blind or lose my feet. Well, guess what…. Brain surgery isn’t something that can happen to me because of my diabetes. I always thought by the time I was 40 I would have major nerve damage. I NEVER thought I would have to have surgery on my brain and skull, let alone in a pandemic and during such an unsettling time in our country.
Well, here I am. One week before my surgery and I think my brain (and Eric and Tatiana’s brain) is at its max capacity for stress. I talk to my friends living in Minneapolis trying to get the world to understand it wasn’t them that started the riot, I think about how my state believes the pandemic just magically disappeared, I think about the chance I could have an issue during surgery (die, become paralyzed or never actually be any better). Seriously, the stress….. Everyone has it right now, I just never thought we would be having a pandemic and riots across the country while I was lying in bed during brain surgery?
And my husband…. OMG do I love him! He fought for his company not to send them back to work (99% of the employees were working from home) so he could make sure his “high risk employees and me” were safe from covid. The stress he has had. See, Eric and I have been through a high risk, need to decontaminate stage when Tatiana was born. We were taught how to wash our hands (helped that I was in the food industry for years), we were taught distancing, we didn’t go out for months with her so she didn’t die from RSV, we were taught all that when Tatiana was born premature…… We were taught that, but nobody else really was. So he fought for his employees and he fought for me.
And then we add my Gastroparesis (GP) into the mix… WTF? For those that don’t know what Gastorparesis is, it is a stomach disease. My stomach muscles have decided to stop working properly. Therefore, that means if I eat something, my stomach might not digest it. Well, my new meal plan is 6-8 very small meals each day. No high fiber, no peels from fruits or vegetables, all vegetables need to be cooked or steamed, and when I eat each meal it consists of very little, about a ½ cup of food during each time. Visually speaking….. make a fist and cut it in half, that’s the amount of food my stomach can handle. Most hospitals around the country have never dealt with gastroparesis meal plans, let alone heard of Gastroparesis. Why is this little hospital in Wyoming going to be any different?
I have been working hard at controlling and understanding my GP. Personally, I think I have controlled my GP, but it is scary. If I eat the wrong thing I could be constipated for days! (I know, gross…. I’m sorry, but this has become my life and if you are reading I assume your reading because you care and love me or you are going through something similar). Well, after surgery they won’t release me until I have had a bowel movement. Let’s just say this is a small hospital, and although I love my neurosurgeon, the hospital still has to follow certain guidelines….. What if I overeat? What if they don’t have anything on the hospital plan that is GP friendly? What if I don’t get my coffee in the morning? What if….. What if….. What if…..
Before the pandemic hit America I was okay having this surgery. I knew Eric would be there to get me the food I needed or to provide me with the items I needed to continue to be healthy during this hospital visit, but now, I’m on my own. He won’t be there to get me my latte in the morning (which yes I am spoiled, but that is what I have to prevent myself from going into hypoglycemia – low blood sugar). I can’t just walk down to the hospital cafeteria after having brain surgery. He won’t be there to back me up if a nurse doesn’t believe me about needing to eat 6-8 small meals a day. And trust me, there have been multiple times where a nurse or doctor didn’t believe me because I was always the “Happy Thea” that everyone loved. The number of times I cried because they didn’t believe me is uncountable. The number of times I was bawling just trying to figure out what was going on with my health or my daughter before they actually listened and believed that I wasn’t making it up is more than I can recall. He won’t be there to back me up or hug me when I start crying and I just can’t form words anymore. It is scary for me. I have grown up to be a strong independent woman, but many of the reasons I am as strong as I am is because of the number of times I was pushed down and told I didn’t know what I was talking about. The number of times I was told I was a hypochondriac and it was all in my head. The number of times a doctor told me I was going to be blind at 30 if I didn’t do everything they said….. ALL THE TIME!
So, anyway…. I’ve been rambling quite a bit. If you are still with me here thank you for continuing. I went on a little rant about my past and the fears I have because of my past. I have been nervous. I have been nervous for my friends, I have been nervous for our county, I have been nervous about this surgery. Plain and simple I am nervous. At any second of any day I am nervous. It sucks! @#@#@
Currently I feel like I have no control in my life. After my car accident I started something that gave me a sense of control and a sense of being alive, this little thing I did for my family, it made me feel important and needed. So, what was this little thing? It was making dinner. Well, I feel like it’s being taken away again. See, after the car accident I had trauma. I wasn’t sure who I was. I didn’t talk to anyone. I was someone well known in my community and then I was a no body. I was lost. Now, I’m back where I was right after my car accident.
I feel hopeless. After my surgery I won’t be able to lift a gallon of milk without major pain. I can’t take care of Eric and Tatiana. I personally am going to have a difficult time having someone else take care of me. I have always been the mamma bear, being demoted to the baby bear is not okay by me. Especially since I have learned to fight for myself. I have told some people I’m worried about what we are going to have in the house for food, that I was trying to make a menu plan for Eric for after surgery. I have heard multiple times that I don’t need to worry, Eric and Tatiana can take care of themselves, they aren’t going to starve themselves. They are right, they can take care of themselves, but they have no idea what I can eat without me really getting sick because of the GP.
So, why is that such a big deal? They can feed themselves and I can feed myself, right? Well, I’m not sure if I can feed myself or if I will have enough energy to make something small for myself. I have heard that even the first week (sometimes the second) I might need help just taking a shower or going to the bathroom. If I need help taking a shower or using the bathroom there isn’t any way I can make myself food. Plus, if they make me whatever they eat, I may not be able to eat it. That means strain on my stomach, which means strain on my neck, which means I could have a cerebellum leak. Which in simple terms means….. NOT GOOD! So among all the other stress I have, I also have to worry about a cerebellum leak because of my GP, which could cause a brain herniation or a brain infection. ARG!
But it isn’t all gloom and doom in our household. One of our favorite things we say in our household is “What are you going to do about it?” We have said it to our daughter multiple times and Eric and I have said it to each other multiple times when things just don’t seem right. By doing this we have learned what powers we have within ourselves and how far we are willing to go to “fix” a problem.
Needless to say, Eric asked me what I was going to do about my nervousness about not having the right food for after the surgery. He wasn’t being mean, he really wanted to know what I wanted to do about it and how I could ease that stress I had. He wanted to know how he could help me, please understand he tries so hard to know what my body can and can’t eat, but my stomach changes constantly on what it will or won’t digest. One day I can have marinara sauce and the next day I can’t. He understands that and he was concerned for me on making sure I was getting the vitamins I needed, making sure I didn’t become malnourished because of not being able to eat the proper foods while I was healing from brain surgery.
Anyway, back to what was I going to do about it. Really, what was I going to do about it? At first, I sat and to tell you the truth I didn’t know. Then, I realized, there was something I could do about it. I could make gastroparesis friendly freezer meals. So, I started making freezer meals. I have meals for me for breakfast. I have meals for me for lunch and I have meals for my family for dinner. I currently have 30 meals planned for myself that Eric or Tatiana can throw in the oven and make for dinner. Something that I can eat to help prevent my brain from getting herniated or having a cerebellum leak because I won’t be strained from constipation.
There is always an answer, it just depends if you like the answer or not. It depends if you have help finding the truth and the safety within the answer if you go to a dark space. I could have gone to a dark space saying I had no control over what I could or couldn’t eat after surgery. Instead I went to a place that was beneficial to everyone that is going to be near me during, before and after the brain surgery.
Currently everyone in our country is stressed. Some because they feel like their rights are being taken away, some because their rights have truly never been given to them and some because they just are privileged and they don’t really understand how lucky they are. When you feel an injustice. When you have something that just doesn’t feel right….. ask yourself, “What are you going to do about it.....”
THEN DO IT!
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