Jenna’s Story

Does anyone else worry they talk about their illnesses too much? I did, especially online. So, I stopped talking about it. But keeping it all inside, for a year, has not served me well. I need to get it off my chest. I guess I wanna talk about it now because it’s a mixture of feeling like I need to remind people that just because I don’t always look sick or act sic, doesn’t mean that I’m not sick. It’s a big part of my life. I feel a responsibility to talk about the impact of chronic illness for all those who are too ill to do so. It feels good to raise more awareness around it and be vulnerable to the thoughts chronic illness can present in your life. But there’s no doubt I still worry often that I talk about it too much.  The reality is that illness is a part of my life 24/7. So the amount I talk about it is an absolute smidgen to the thoughts and impact that the illness has on my life every day. My illness impacts everything I do. So it can be hard not to talk about it when it’s so present in my life. I have been feeling ashamed for a little while now, afraid that people would think differently of me once they knew I was ill. But the fact that I have been sick my whole life and didn’t know why is so huge to me.  Recently I’ve had a huge breakthrough, and I’m somewhat comforted by the realization that there was a reason. I recently learned something about my body, and it might be a major factor in everything that has gone wrong in my whole life.

I listened to my body. My body told me when I was really sick. I had severe headaches, weakness, and numbness in my extremities; uncontrollable nausea and vomiting; loss of vision/hearing/speech ability; chronic pain; etc. And when my body told me something was really wrong, I sought medical attention. So I started with my blood work. And for a while now, my white blood cell count has been testing through the roof. My platelet count is also really screwed up, and I have been having some neurological issues. I got sent to a hematologist, and they looked at my blood and decided it wasn’t cancer. Although they thought something was wrong, they couldn’t pinpoint it. They decided that they were going to monitor my blood for further changes in the future. My primary care doctor started looking into MS and Fibromyalgia. She said I had two options, I could go to a spine clinic, or I could get an MRI of my brain. So I chose to get an MRI done of my brain and my cervical spine. I knew that the migraines and pain I was feeling were not right. I received the results back that I don’t have MS, but they found that something else was wrong.  They found some messed-up blood vessels in my brain. I always joked with people that I had something wrong with my brain. I’m grateful that I chose to move forward with that MRI so that I led to this discovery.

On June 9, 2021, I was diagnosed with CCM disease, a benign vascular brain tumor, and Spinal Stenosis of my Neck. My cavernoma in my Cerebellum explains all my symptoms. {Cerebral cavernous malformations (CCM) or cavernomas are collections of structurally abnormal slow-flow capillaries in the central nervous system. Often, individual cavernomas are surrounded by hemosiderin representing remote oozing due to the abnormal capillaries.} The specialist said I’ve likely been experiencing symptoms of my CCM since I was a child. Many people have such minor symptoms and live their entire lives not realizing they have this condition. The specialist also told me how common it actually is. He says about 1 out of every 500 people you walk by on the street have them and may not even know it; they remain dormant. Many people start to discover that they have one around 37 years of age; however, they can present at any age. They are dark red to blue in color and look a little bit like small mulberries. Brain berries! Sometimes they rupture and bleed and ooze. Bleeding in the brain is not a good thing. It can cause temporary or permanent damage, resulting in things such as an inability to walk, talk, swallow, see, hear, smell, feel, etc. It can cause headaches, seizures, and even cause death.

Once I knew what was going on, it all made sense. My life has literally been turned upside down and placed on hold while I dealt with understanding my diagnosis and how it has affected me. My brain hemorrhage changed the way I look at my life. Brain surgery is the only current treatment for the illness, but there are medications under development to strengthen the vessels and stop more cavernous malformations from forming and bleeding/leaking. Unfortunately, I can’t have brain surgery to remove my cavernous malformations because they are located next to a developmental venous anomaly (DVA) (A major blood vessel feeding my brain. This dilated blood vessel only rarely causes symptoms on its own. However, it may create conditions that make it more likely for cavernous malformations to form.) On December 7, 2021, I learned that I have a second cavernous malformation also in my cerebellum; it’s smaller and is also inoperable. Unless something changes, I have to live with this for the rest of my life. Once a cavernous malformation has bled once, it is a greater risk of bleeding again, so I am at significant risk of having another hemorrhagic stroke. The Stenosis of my Neck causes a lot of nerve pain. I still have really bad flair-ups sometimes, but I managing. Migraines are dangerous and confusing because I have to decide if I need medical attention. And as for feeling dizzy, that’s confusing as well in the same manner.

Unfortunately, always in the back of my mind is the anxiety of not knowing what is going on in there… it’s kind of like a ticking time bomb. Things have changed so much in the past year within me within my body and mindset. Everything that was going on with my illnesses came to a precipice. I would always ask myself, “why am I so sick” and realizing that there’s a reason behind my symptoms is so comforting to me. For so long, I dismissed my symptoms. I thought I was just getting weird migraines. Now that I know there is a reason for my symptoms, I’m no longer ashamed of everything that has gone wrong. Heck, I can probably attribute the two times I’ve broken my leg to the balance issues that my CCM has caused. Also, my CCMs may contribute to the psychological issues I experience, such as difficulty regulating my moods.

Yeah, my brain berries ooze and leak sometimes, but I’m learning to manage it better. It’s like, wow, I can move forward with the information that I have. Proceed to have a better life and make better decisions. This rare disorder has made me realize how much I love each and every one of you with all my whole heart. That life is too short not to live like that. I thought that I would be so down and depressed, and I kind of was for the past year, mulling all over all the information and gaining an understanding of my disorder. But at this point, the opposite has happened; it’s made me grow as a person, and it’s made me love more. My closing advice: listen to your body and intuition.

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