Let’s talk. It’s been a long road for me. I’ve had a lot of complications arise directly caused from my sleeve gastrectomy. But these are not related. At least not that we are aware of.
I joke with friends and family who have been with me through everything that to an outsider, my story must seem complicated or unbelievable. I don’t blame any one for scratching their head and asking questions.
My goal in starting this blog a few years ago was only to document my weight loss progress. But it has become so much more. It has become my outlet to release pain. To begin the process of healing. To show others that there is hope. To show myself that there is hope. There is hope.
HOPE. Such a small word with a meaning so large and heavy that not one person could carry the weight alone on their shoulders. Sure, you can catch a glimmer here or there. Or feel something stirring in your heart. But true hope isn’t something you carry alone. I’ve learned in the last month that the full weight of hope is carried in pieces by individual people who are moved to give that hope to you in a time when you need it most. They feel it in their soul that you need to hear it. Anything from a prayer to a song to a meal, that hope given in small pieces over time gets us through the big things in life that we could never get through alone.
To the people who felt called to reach out to me and answered that call, thank you. It has given me that piece of hope to this puzzle that life has given me and is helping me to move through some of the most difficult days of my life.
I have been rather quiet about most of what I have been dealing with. Mostly because I don’t want to burden anyone or have anyone feel that I seek pity. But I’ve also never been one to keep quiet.
So, I’d like to tell you what I know as of today. I don’t have all of the answers. I only know what has been told to me as of now. I’ll let you into my world for a brief moment as you read about how my body seems to betray me yet again.
Sometime in the early hours of January 22nd, I awoke to use the restroom. I noticed I was unusually weak walking from my bed to my toilet. When I was done using the restroom, I went to stand up, but my legs were too weak and could not support my weight. I ended up falling face first onto the floor. I tried to stand up but could not. I tried to crawl but could not. I tried to army crawl but could not. I tried rolling but could only roll onto my side. I laid there long enough that I fell asleep.
My alarm went off at 6 am. I woke up to it and knew that I had to do something. My 13 year old and I were the only ones home and I didn’t want him to see me that way. So I somehow forced myself to crawl to my bed and turn off my alarm. At that point, I slowly and carefully stood up knowing I had to figure out a way to walk to my son’s room to wake him for school. I did just that and managed to make my way back to my bed before collapsing into it.
Later that day, I went into the emergency room knowing something was wrong. After the bloodwork came back, it was determined that I had rhabdomyolysis. This is something typical in bodybuilders. It is a tear in a muscle which then releases toxic proteins into your bloodstream that attack your kidneys. The doctors said I was just hours from kidney damage. The way they treat this is by hooking you up to fluids and flushing your system until those protein levels are lower. I was hospitalized for 5 days.
I followed up with my primary care provider who couldn’t figure out why I would be so weak and fall the way I did. Suspecting a seizure, he referred me to a neurologist.
When I say the neurologist was old school, I mean it. He walked in with a pad of paper and a pencil. Everything I said, he wrote down. Not once did he touch the computer. He was definitely the most experienced neurologist in the office. The EEG had come back normal, but he wanted an MRI because I have been having headaches for close to a year now. Almost daily. And I knew it would come back normal. Even this much older neurologist with tons of experience knew for sure nothing would be found on the MRI. But, just to be sure….
We were both wrong. I received a call from the neurologist himself that Monday morning saying that there was a tumor in my brain and the next step was to see a neurosurgeon. That was the only information given.
Terrified, I asked my aunt, my mother’s sister, the next best thing to her, and wanting more than anything to grab and squeeze her hand, the hand that has seen so many years of factory work and arthritis. I didn’t want to hurt her. I resigned myself to wringing my own hands, though it brought little comfort.
The doctor was calming from the moment he walked into the exam room. The tumor is benign. Non-cancerous. In an area that has few nerves that can be affected. Slow growing. Three options. First, wait to see what it does. Do an MRI every 6 months. Second, radiation. However, if the tumor grows 0.2 cm, radiation is no longer an option. Third, surgery. The decision is mine.
I opt for radiation because I don’t want any more surgeries and I am afraid that the tumor will grow. If it grows, then surgery is the only option.
The size of the tumor is near a golf ball but shaped like an egg. Trying to keep a sense of humor, my family and I have named him George. Here he is in all of his glory. He is located behind my left ear.
With a plan in place, everything went back to usual. I began to get back back to normal even though I still felt tired. It was a new normal. I slowly started telling friends and family about the tumor and what our plan was.
Until, I woke up in the early hours of Valentine’s Day to use the restroom. I stepped out of bed and fell hard to the floor. My right leg had nothing to it. It was limp and would not move. For the mothers out there who have had an epidural, that’s what it felt like. Like I had an epidural in my right leg. I tried everything I could to do anything. But with an entire leg as dead weight, there wasn’t much. I tried pulling myself back into bed, but was unsuccessful. Again, I fell asleep on the floor. At some point I awoke and army crawled into the bathroom to dress myself because I knew I was going to the hospital by ambulance. I’m sure I fell asleep in there too. My alarm went off again at 6 am. It was 7:38 before I was able to get to get to my phone. It is about 10-15 feet from where I was to my phone. I pulled myself into bed and called out for my son who finally heard me. I advised him to get ready for school as I called my sister in law. As soon as she arrived, I called for an ambulance knowing I wouldn’t be able to make it down my stairs. The diagnosis was, again, rhabdomyolysis.
It was a full 24 hours before I was able to move my right leg.
The hospitalist thought for sure it was the brain tumor causing these problems: the weakness, limpness, and numbness in my leg. So he called my neurosurgeon for a consult. When he came to the hospital, he said that the tumor was not the cause, but that the bulging/herniated disc in my spine might be. It may be pushing into my spinal chord hard enough to cause nerve damage. We are hoping this is the outcome because at least we would know and it could be fixed surgically. The only way to know if it is a bulging/herniated disc is to do an MRI. If it isn’t that, then I’ll have to undergo extensive neurological testing.
Right now, we are waiting for our insurance to approve an MRI. We’ve never had any issues with them approving things, but this has been a struggle. My neurosurgeon has to do a peer to peer call to discuss whether I really need this or not. And because I’ve been hospitalized with rhabdomyolysis twice within a month, the benign brain tumor will need to wait until the cause of my falling down is discovered. I’m not sure what will happen if the MRI is not approved.
In the meantime and with the blessing of my doctors, my husband swooped in to save the day. He packed myself and our son up to stay with him. He travels for work and we own a camper. So we are in North Carolina now. Our 13 year old struggled with public education so we enrolled him in private online homeschool. And he is excelling at it.
I am still being monitored from afar. From calls from nurses to lab work from 3rd party labs, I am in good hands. I am almost never alone so the risk of something happening and being alone for hours at a time has been eliminated. We will return for any medical testing needed that can not be done here. We have a plan if we need immediate medical care. And we are also within a few hours of Duke University Hospital, a very highly ranked hospital.
We have a plan to return home towards the end of April and will return to stay with my husband dependent on what needs done. If the MRI isn’t approved and I don’t have any more episodes, I’ll move forward with radiation. But if I continue to have these episodes of falling and tearing muscles, we will have to continue to seek answers.
Of everything I’ve been through in life, I know I can get through this. From the deepest pits of my soul, I feel called to shout out that anything is possible. God makes it possible. You make it possible. I make it possible. Together, we make anything possible.
Forget when they told you to give up. Forget when they said you aren’t worthy. Forget when they said you aren’t good enough. You are. You. YOU are good enough. YOU are strong enough. YOU can make it through. YOU are loved.
Thank you. If you’ve made it this far in this lengthy blog that has taken me so long to write, thank you.