I’m A Fighter
I’ve been getting a lot of messages asking for updates on my health. For some reason I couldn’t bring myself to respond to anyone. I felt that the more people who knew, made it more of a reality. I’ll admit I was in denial and if I ignored it, just maybe it would all go away. I’m coming up on a year of my first scary test result and it’s safe to say life isn’t going to get any easier for me.
In April I was diagnosed with a dissection in my carotid artery after suffering in pain for months. Prior to their findings I was told I had a sinus infection and put on antibiotics for many weeks. After the dissection they found a renal artery aneurysm. I went to many appointments here in Rochester, NY and then a procedure angiogram. The medicine they give to relax most patients didn’t work on me and I laid through the entire thing awake and heard them say that they couldn’t operate on it and the kidney would have to be removed. I then met with a surgeon who told me he had a friend who worked at the Cleveland Clinic and who specialized in Fibromuscular Dysplasia, which is a rare vascular disease, that typically presents itself with dissections and aneurysms. I went to see the doctor who is now my Vascular Specialist. While at the Cleveland Clinic I underwent many tests to determine whether or not I had this disease and was diagnosed with FMD. While there I was also referred to a surgeon who decided he could not only repair the aneurysm but also could save my kidney, which was very important for someone who has a vascular disease. Most people can afford to lose a kidney and live their life without complications, but given the disease it was important I had two functioning kidneys. I went out to Cleveland three times before the surgery. I underwent an 11.5 hour renal artery repair and auto transplant of the kidney. This means they took my kidney out and repaired the aneurysm and then moved the kidney to a new location in my body. It now sits in my lower front right abdomen. I have new arteries made out of cow heart that connect to the kidney and my bladder. After my surgery, I felt like a brand new woman. I walked the next day and was out of the hospital 4 days after. I had to stay in Ohio for two and half weeks after surgery. I have a little boy and step son and I’ll admit the hardest part of the entire recovery was being away from them and away from home. Many nights I cried and it wasn’t because of the pain from my surgery but because of heartache. I went home and then had to go back out again to get my stent out. Since the day I had my stent out I have had nothing but problems, infections constantly and hospitalizations. I am too weak somedays to take care of my son so he has to spend a lot of time with my Mom. I have seen many doctors at Cleveland Clinic and here in Rochester. My care team consists of: A Vascular Specialist, Urologist/Surgeon, Pain Clinic, Cardiologist, ENT, Infectious Disease, Physical Therapist, rheumatology, nephrologist, otolaryngologist, neurologist and now psychiatrist and therapy to help me cope. These are appointments I go to frequently plus on top of that I have all different kinds of testing done. And if you asked me, I’d still answer that the time I miss out with my child, not being able to care for him or play with him is the worst of everything. I just met with my surgeon in Cleveland and was told that I need to be on an antibiotic to prevent the infections after surgery, I asked for how long and he seemed unsure so I’m assuming it’s going to be a long time, if not forever. On top of having the vascular disease, I’m constantly getting infections and on top of it I was also getting weird symptoms of my feet going numb and turning yellow and purple, but at the same time my hands and face would swell and get burning hot. They just diagnosed me with Erythromelalgia and Raynaud’s phenomenon. If those happen at the same time it’s called a vasomotor dysfunction. They believe I also have an autoimmune disease, but as of now my kidney “infections” and my “auto immune” disorder remain a mystery. I have some good days where I’ll get out, dress up and wear makeup… but even on my good days I’m fighting like hell to make it out the door. It’s so hard to appear fine to everyone else but you’re holding back tears just to get up and walk. I’ve learned that people say they care, but very few show up for you. When you’re presented with something like this you truly see who’s in your corner. And it doesn’t matter how much you want to pretend they’re different and how much it hurts you, you’re forced to see them for who they are. In the beginning I was relying on everyone else to just do everything for me. That lasted about a couple months. Nobody is ever going to do everything for you. And no matter how hard it is, I do it myself. I still take care of my house, my husband, my kids and my pets. Yes, sometimes I need breaks or days off to rest but for the most part I’m pushing in every way possible. I took a huge break from social media because I had a lot to work through mentally and emotionally. I didn’t want to tell my story. I was ashamed of a lot, I’ve gained some weight, my hair is falling out and I had to cut it shorter. But during that time spent I built someone so very powerful, in someways I truly feel this was my journey as hard and as unfair as it may seem. I’m the strongest version of myself. I have come so far and I cannot stop now. During my break from social media and on my good days, I brainstormed how I could make money from home and still have bad days, still be a good wife and mom and still go to all my appointments. I always wanted to own my own business, so I thought about what used to make me happy. I used to love shopping with my two grandmothers, my mom, my sister and my friends. I used to love getting dressed up in a new outfit and putting on makeup. I felt so good about myself when I could do that. Now I’m sick and I don’t get to do that very often. But when I’m working on my website or ordering clothes for the store it takes me back to those days. I’m not starting a business to become rich. I’m starting a business to pay off all my medical debt this has caused. I’m starting a business to make my family proud. I want to set an example for my children. I want them to watch and understand that life is a fight and the only way to make it anywhere is to NEVER backdown. My website has a blog and I’d like to build a community for people with health problems to feel comfortable venting. 5% of all purchases will go to a couple different charities. I haven’t picked which ones yet and I wanted to do a poll.
I think it’s important to remind everyone that while you’re under a dark cloud to not stay in the dark like I did. There’s always someone who cares, someone who will listen and someone who will shine some of their light your way. It may not be the people you want it to be. It could be a complete stranger on a blog post, but it is definitely better than going through it alone. Nobody deserves that. Don’t ever be embarrassed to express vulnerability. Pain is not a weakness. I see all of you who are fighting your way through this life. And I’m so very proud of you!!!!
Please share this post to help me build my community and to help me get feedback for my charity selection. I will pick the charities on Sunday @9pm. Comment your choice on this post below and why it’s important to you.
Thank you to everyone who is following my journey and for your support ❤️