My parents got me a tiny rubber ducky luck charm earlier this year… here are some of the Duck’s adventures….
My parents got me a tiny rubber ducky luck charm earlier this year… here are some of the Duck’s adventures….
My niece Ani and I took a long weekend trip to Vermont recent. We had planned this trip to celebrate her 13th birthday and my 40th birthday. The trip was perfect, we went to Ben and Jerry’s to do the factory tour and have some ice cream, hiked Quechee Gorge and visited a horse farm. For me, this trip was just what I needed. I needed to get away and remember the good things in life. My father came with us as a driver, as we were unsure if my Meniere’s disease would allow me to drive and function as I wanted. Luckily for me, I have been seeing a new ENT who is taking an aggressive treatment plan which involves injections through my eardrum into my inner ear with steroids to stop the vertigo. Now I will go deaf quicker but I am willing to take that if the vertigo stops, as that is what prevents me from enjoying my life. However, I was lucky and only had one or two quick dizzy spells and was able to be active the whole time.
Below are a few pictures from the trip. I will definitely be back to Vermont again as soon as possible, I fell in love with Vermont completely, I would move there if I could.
Peace – JS
Yup I planned on posting on here more often but life just kept getting in the way. But I am really going to try to post more as I am taking a break from Facebook. I find facebook can be very toxic and I want to focus on the positives and good things in my life.
So since I last posted I added to my little family. In February I adopted a new cat, her name is the Doctor and she has been an amazing addition to my family.
She has settled in nicely and Bear has adjusted better than I could have dreamed. She hasn’t hissed once at the Doctor and the two of them now hang out and cause trouble together.
She is still her moody self but now I feel like my little family is complete.
I just got home from a trip to Vermont with my niece Ani and once I go through all my pictures I will post about the trip. I definitely fell in love with Vermont and will be going back there again soon.
Peace – JS
A week or so ago I promised my brother if he got me a certain beanie hat I would blog more and blog while wearing the hat. I believe in keeping my promises, so here I am on a Friday night, wearing said beanie hat and I thought… I should blog about this.
But seriously while I am not going to blog about the beanie hat, while it is an amazing beanie, I do want to update my site more. I pay for this domain name I might as well use it.
So lately I have been thinking about 2018 and how I believe it was a year of change for me. I started the year living in Maryland (where I had been living for almost four years) and I had started working at a new job back in October of 2017. I really liked the new place I worked and I was finally getting to a place in my life where I was very happy and content with myself. But I had the knowledge I was going deaf in both ears hanging over me. The more I thought about it the more I realized it was time to go back home. Now home for me is not where I grew up but the town I moved to and all my family now lived in, Rochester, NY. I had left Rochester NY four years earlier, I left for many reasons and I still believe my decision to leave back then was the right one. However, after living in Maryland, by myself with no family and to start no friends nearby, I had found myself. I had grown to realize I liked me and I had proved to myself I was actually ok. Now, this may sound simple but for me, it was life-changing. For years I had hated myself, I had hated every single thing about me. I couldn’t even look in a mirror as I hated the person I saw. But for some reason, those four years on my own in Maryland made me like me, made me be able to finally look in a mirror and not hate myself. I have no idea why it did that, but I am so damn grateful it did. Because when I knew I had ten years maximum until the doctors told me I would be legally deaf, I was ready to go back home, ready to be ok with asking for help. So I took a huge chance and took a position with the company I worked at but in their Rochester NY branch. It was a big step up career wise but I knew it was the right step.
So in June 2018 I packed a Uhaul with my stuff and my dad flew to Baltimore to drive my car back to New York with me. He and I stopped in Pennsylvania for the night at a pet-friendly hotel, as I had my trusty cat Bear with me, going on another 400-mile journey with me. And once again my cat amazed me with the ease at which she handled me uprooting her. I moved into an apartment complex that my best friends and their kids live in, they helped me unload my Uhaul, with my niece Mia shocking all of us with her brute strength basically single-handedly unloading most of the truck while her mother, father, brother and I attempted to put my IKEA bed back together. Then later that week my mom and I took one final journey back to Maryland to grab the rest of my stuff and go to one final appointment in Baltimore. Then I started work at my new job and threw myself back into life.
Over the next few months, I made friends at my new job and reconnected with old friends. I also got the chance to enjoy the small things, like taking my nephew out to eat, having my nieces sleepover and being at family events. But I also allowed my family to help when my Meniere’s disease reared its ugly head. My parents have picked me up from work when I was too dizzy to drive, my sestra has brought me over ginger ale when I was nauseous from vertigo and my brother has made time for me when I needed to talk.
So 2018 was a year of great change in my life and I am hoping 2019 is just as exciting. I have many plans for the year and coming years and I am hoping to uphold my promise to my big brother to blog more while wearing this beanie. 🙂
This is the little balcony garden I have at my apartment. I wish I had a house and a large lawn to garden but I don’t so I make the space I have work. This year I planted: numerous basil plants, parsley, rosemary, lemongrass, mint, French lavender, a stevia plant, 4 cherry tomato plants, coleus and flowers including my favorite, snapdragons.
I met this little monster at one of the gardening centers I went to yesterday:
I still need to get a small table and possibly another chair but slowly it’s getting there.
I am really trying hard to enjoy life and not focus on going deaf but instead focus on the things in life I love and will continue to love whether I can hear or not. I will eventually accept going deaf properly and cope and deal with it.
But right now I am still just taking it day by day. So far this weekend has been 2 very good days for me. And spent lots of quality time with this demon.
Spoiler alert: this blog post will be long and slightly discombobulated.
I have known for a few months now that I was losing hearing in my “good” ear. I have Meniere’s disease which affects the inner ear. It can cause ear pain and pressure, ringing in the ears, vertigo and most fun of all hearing loss. About three years ago when this started I was hoping to be able to save the hearing in my right ear. My left ear never really went back to normal after it flared up. If I stuck to the low sodium diet, ate healthily, exercised often and got plenty of rest I could keep it that way, or so I hoped.
Three years on I have coped pretty well all things considering. I have moderate/severe hearing loss in my left ear. I don’t get too many bouts of vertigo and I have gotten very good at working through those. I get ear infections much more often but medications help to make that manageable. The ringing in the ear can be maddening however I know when that stops it will also mean my hearing has gone. And as indicated earlier my hearing in my good ear has decided to go. My ENT is hoping that the hearing loss in this ear will progress much slower than it has in my left. My left ear has never had any hope, poor thing. However, I have had to accept that I will go completely or “legally” deaf in both ears. I am hoping I have five to ten years until that happens.
I am pretty pissed off about it honestly. But I also know being pissing off about it won’t change a thing. I have to figure out a way to make this challenge work and just move on. I am allowing myself to be angry about it. I feel robbed. I am pissed, I feel like I have really been through enough shit in my life taking my hearing is a sick joke. I love music. Music has quite literally saved my life on more than one occasion. My struggles with mental health issues consumed my twenties. But I pulled through that. I got help. I found my inner peace and started smiling again because I liked me again. Sure I still hit some bumps, I have never taken the easy path in life. But I always got back up, dusted my self off and figured my shit out. I took a huge chance and moved 400 miles away from my friends and family to prove to myself I was ok. And I was and I truly found my home down here.
Then Menieres decided to strike me. Now I have to think about things like where do I learn sign language. I need to get the apartment complex to install a fire alarm with a strobe light since sound won’t always be able to wake me. I need to get an alarm clock that shakes the bed to wake me in the morning. All of that is super annoying but to know I will one day not be able to hear breaks my heart. I won’t hear the sound of my cat purr or meow, the sounds of city life and traffic, the sound of laughter, the sound of birds in the morning, the sound of the waves crashing on the beach, the sound of my friends and family just talking.
I have been on an emotional rollercoaster lately. One minute I am angry about it, then crying about it, then sucking it up and getting on. Right now I am trying to cope my way. I am letting myself be angry, I am even letting myself cry and I am trying to enjoy as many sounds as I can before it happens. I always hated the term bucket list but fuck it. I am going to have a bucket list of sounds to hear before I go deaf. I am going to see Radiohead in July with my brother. I went to the Baltimore Symphony Orchestra the other night. I want to go see Carmen this summer again. I want to see Austra in concert. There are so many things I can’t even begin to list them all. My brother and I will be still going to concerts when I am deaf, nothing will ever break that bond between us.
I am in awe of my parent’s determination to be right there with me and refusing to even slightly budge. Up front, I will admit both of them will have sign language mastered way before I do! I put them both through a lot and I know this is hard on them, they hate seeing me hurting in any way. They know I will get through it though. I am just like my mother and father in my stubborn determination to never give in. It is definitely a family trait.
So I am going to go deaf and I need to figure it out. It is going to be difficult at times and my life will definitely be different but still good. I refuse to let it change my inner peace I will be OK. I refuse to give in to the darkness it has cast on me. I will go through the stages of grief about it and cope because there is no other option. I will fall down a few times, I will have to ask for help (something I absolutely hate doing) but I am smart enough to know I can’t do it all on my own. SO these next few month and years might be a little discombobulated (much like this post) while I figure this shit out. But I will figure it out. I always do….
2017 I had such high hopes for you and to be honest you didn’t live up to them. However, I did change my goals and plans mid-year and while the road was bumpy at times I made it and I am better off for having gone through what I did. As much as I hate the phrase ‘what doesn’t kill you makes you stronger’ it is true. This year I had my heart tested, my mental health tested and my strength to keep going tested but I made it. I survived. And I am in a better place now. I know what I want and where I want to go. I refuse to settle ever again. So while this past year definitely turned out very different than I planned, I believe I ended the year exactly where I need to be. Working and focusing only on me. I wasted way too many years trying to please others or be someone I wasn’t. But now I know myself better, I can be honest with myself about what I need to do. And while I am still working on myself overall I can look in the mirror and be ok with the woman I see looking back at me. She isn’t perfect far from it but she is me and I like me, flaws and all. So here is to hoping 2018 takes me exactly where I need to go. Where ever that may lead I am ready for it.
“Not all those who wander are lost.” – J. R. R. Tolkien