Hello everyone I’ve been a little behind in posts the last week due to some overwhelming bad news that I will explain in a minute. First I want to start this post by saying a huge thank you to my fellow blogger over at livingalunglife.com. She has nominated me for The Liebster Award which recognizes new up and coming bloggers to watch. I feel truly honored for the nomination and I will make another post about the award and follow the rules to keep paying it forward. I hope that I can continue to inspire others with my story and struggles I face each day. So don’t think I don’t appreciate the nomination I really do, I’ve just been overwhelmed with issues this week. I hope to follow through with my duties as a nominee within the next couple of days. 🙂
Now back to why the hits keep coming. If you’ve been reading my blog, you are probably familiar with the fact that I’ve been through a lot with my health over the years and very recently. It seems like the last 13 years of my life have been nothing but pain, suffering and major health issues. For 13 years I’ve suffered chronic back pain, had numerous back surgeries, procedures, treatments, tests all of which have not helped the pain. In addition to that for most of my life I’ve just had poor health. If the wind blows the wrong way I just get sick. I’m not sure which parent to thank for my horrible immune system but thanks Mom and Dad! You could say my life has become one similar to that of a Lab Rat. I get poked and prodded and have new treatments, drugs, surgeries, tests, and everything under the sun done to me. It seems like nothing ever helps and just leads to more unanswered questions and tests. I am sick of being sick and of living in hospitals and doctor’s offices.
So as if all the crap I’ve been through for years with my health wasn’t enough. This past April is when my first brain tumor the acoustic neuroma decided to make its presence known with some horrible vertigo that hit me hard and fast stopping my life in its tracks. Oh and also getting me fired from my new job. Thanks brain tumor! During the course of my journey with that tumor, finding my surgeon and getting ready for surgery I got hit with a horrible eye virus from hell. I actually officially call it the eye virus from hell because that’s the best description. I was supposed to have brain surgery to remove the acoustic neuroma in early August of 2015. But the eye virus from hell appeared swelling my eyes so bad I could barely open them. I was nearly legally blind for weeks and in severe eye pain and horrible headaches. I was running a fever and it made me horribly sick. My eyes were so red and the swelling was so bad I didn’t even look like me. I was hideous looking for a while. This virus put me in the hospital for 5 days. The first hospital misdiagnosed me and sent me home after a few days of major IV antibiotic treatments and eye care. I only had one eye infected at the first hospital and when they released me I seemed to be getting worse and the other eye started to show signs. So I questioned them. Also when I say they misdiagnosed me, they told me I had MRSA. MRSA is a word that should scare you, it’s an antibiotic resistant bacterial infection that can kill you. And it supposedly was in my eyes, near my brain…the brain with the brain tumor in it. You could say I was a tad scared. They released me and I get home. By the next morning my other eye was just as bad as the first infected eye. So we decided to head to the ER of one of the top hospitals in Dallas, UT Southwestern Medical Center. I am so glad we did! First of all, I show up to the ER looking like Quasimodo but worse! I was so sick by that point I could barely stand up and was horribly weak and running a high fever and nearly blind. Long story short UTSWMC got me admitted quickly and started running tests. They quickly ruled out that I did not have MRSA the deadly infection the previous hospital told me I had and terrified me about. They had all sorts of specialists come to see me. Had about three IV lines in me since they had to run a constant flow of antibiotics in me around the clock and also have other lines to give me other meds and take blood. They found out in less than 24 hours that what I had was a virus that was usually not that bad but mine somehow just was. Lucky me! You are wondering how I got this virus. We retraced things to figure out how and discovered that it was me who gave it to myself in the weirdest of ways. When I was doing my pre-op clearance appointments for brain surgery I had to do a PFT (pulmonary function test). Basically this test is breathing exercises into this face mask that makes you look like Darth Vader. When I did the test at my doctor’s office I had pretty much been home for months sick from the brain tumor and not exposed to any new germs. Well guess where germs like to live, at doctor’s offices. So we think that I picked up a virus at the doctor’s office since I was going so much at the time. When I did my PFT test I had to blow really hard and I felt a sudden air bubble/force in my eyeball through the little tear duct. That is when the virus got spread to my eye by infected snot being blown in my eyeball. Normally it would have just caused a respiratory infection. But when it gets in your eye…well it can cause PURE HELL! That’s my kind of luck I’ve had in my life. Before I left the doctor’s office that day my eye had already started turning red. So we knew that was the source. But seriously, who blow’s snot in their eye and winds up with a death eye virus from hell? I’m patient zero on that one. Once they diagnosed me properly and got me on the right medications within a day of treatment I was doing so much better. After a few days I was able to go home and continue treatment and working closely with my new ophthalmologist. We did have to reschedule my brain surgery until the virus was all clear out of my system so that delayed things a bit.
So far last year was bad. Up till this point I had endured the hell of my brain tumor and the eye virus from hell. Little did I know that we would find more… In August we did another MRI right before surgery after the eye virus to be sure all was good for surgery. In this MRI we found another brain tumor, a meningioma. This one is small but it’s in a tricky location. When my surgeon called me with the news my heart stopped for a minute and tears rolled down my face as he explained it to me on the phone. This second tumor is behind my left eye resting on my temporal lobe. The biggest concern at the moment is if it grows towards my optic nerve I could go blind in my left eye. Now you have to realize having one brain tumor is scary enough, but two in the same year well I was in panic mode. This terrified me. The only source of comfort I had was knowing it was small and this type of tumor typically grows slow. So despite the horrible things this tumor could eventually create for now it’s small and we are going to keep an eye on it, pun intended. J The time came for my brain surgery in September to remove my acoustic neuroma. It was a hard surgery but I made it out alive. The last 6 months since surgery have been hell. The surgery to remove the tumor forced them to sever my balance nerve in order to remove it all, and my hearing nerve was damaged. I lost my hearing in my left ear as a result and now have nonstop tinnitus (ringing) in my left ear that drives me insane 24/7. So I’m dizzy all the time, have horrible balance and fall over often and I’m half deaf. I have to use a cane to walk most of the time, which is an upgrade from my fancy walker I had for months! At least it’s a cool cane as the kids I often see out in public tell me since it’s got black and silver snake like scales on it. This recovery has been hard. I could make a list of all the daily issues I have but that might take me a while. I’ve also gotten chronic migraines from the surgery that are horrible. I have brain fog and major fatigue. My memory is horrible and I feel like I repeat myself often and have just become an idiot since surgery. But I was finally starting to get to a point where I’m becoming a little more active. They still won’t let me drive but I’ve been trying to get out of the house more. I thought progress was being made. I was being positive, so happy to have created this blog and trying to start helping others from my lessons learned. Till I got some bad news last week.
Since brain surgery my back pain has been bad likely from inactivity and I’ve been having some really bad neck pain that was new. I had neck pain in the past but it was minimal and I figured it was usually from poor posture. I went see a pain management specialist because I knew I didn’t want to do any more back surgeries to fix my messed up complex back. But I was hoping he could at least help manage my pain with some injections or other minimally invasive treatments. He was shocked at my x-rays from a few years ago and how bad my back was. He even said this truly explains why you hurt so much. We went over my long history of issues with my back and he did an exam. He was concerned about some of my results from the exam and with the pain in my neck and its severity he wanted a new MRI. Monday I got a phone call from him. Now in this past year I’ve learned when the doctor calls you after an MRI and not the nurse, it’s not good news. Especially when they call you really quickly after your MRI. He told me that they found some serious issues with my neck. We talked for a long time and he threw out some medical terms that none of you will likely know because I didn’t. But to sum it up, I have 3 herniated disks in my neck, bone spurs, narrowing of the spinal cord canal and my spinal cord is being compressed and flattened. Now if you know anything about human anatomy you’ll know the spinal cord is a major player in how your body functions. When you have a problem with it, that’s not good. I asked him what that all meant. He told me that if we did not intervene and correct the issues with the compression of my spinal cord that I would face being paralyzed and possibly even some life threatening situations. Fear hit me hard at that moment. He said I know you don’t want to have another surgery but this is necessary. So he’s referring me to a neurosurgeon. I asked him if this was something we could just do pain management with and put off major surgery for a while. He told me no. He could try to help with my pain but he doesn’t think he can and waiting only puts me at more risk. So here I am 6 months post op from brain surgery and now I’m facing another major surgery of my neck and spinal cord. You could say I have a bit of anxiety right now and I’m scared shitless.
So this is why the hits keep coming. It seems like my life has become one huge medical issue after another. I’m really sick of being sick. I’m trying very hard to keep it together and not break down. I’m also trying to stay positive. But I’m human and one person can only take so much. This week I’ve gone from a crying mess to angry to scared back to a crying mess to screw this crap I’m gonna fight it! Everyone tells me I’m strong and I will get through this. I’m glad they think that! But I know they are right. I’ve been hit with more than my fair share of bullshit in my 40 years on this earth. As hard as it may be I do bounce back eventually. I don’t know that this post will motivate anyone cause it’s really more about me telling you all the shit storm that is my life. But maybe on this journey I will find ways to inspire, I hope so. I’ve had a pity party for myself the last few days. But today I finally said you need to stop this crap and try to do something. So here I am writing. I am grateful so many people are starting to read my blog and that some of you have shared how my story has helped you. That makes me cry tears of joy. My life has been about suffering but I do hope somehow through my suffering I can help others cope with their suffering. Maybe I’ll be the lab rat that helps find some cure for something so others don’t have to go through the pain I have. But I hope somehow in my lifetime I will be able to look back and see that I helped others. Then all this pain and suffering I’ve endured won’t be for nothing. So to all my fellow warriors who fight each day with chronic illnesses I say to you keep on fighting. Keep on sharing your story. Keep on living despite the pain. Because people like us do make a difference. We are the ones who smile even through the tears of pain. So go forth and let your light shine bright and keep being the beacon of light that helps others see their way through the dark times.