Weekends

Lately I have been working a lot. I am running my companies flu clinics around the area. It’s been stressful to say the least but I know it’s a good resume builder. So when I am not on call on the weekends I am really trying hard to put myself first and to also enjoy them as much as I can.

This weekend started with a quiet night sitting on my couch with my Sestra having a few drinks and talking. It was so needed for both of us. Saturday morning I got up and went to PT and was released to resume all activities with my knee. Then I went with my brother and niece to Letchworth State Park. We walked around, took pictures, had lunch and just talked. It was a great day spent with two of my favorite people. But when I got home after that I felt horrible. My knee was fine but my body was angry. So I took today to rest, drink lots of fluids and relax and I feel much better tonight.

I am not on call again next weekend and I already have some plans. I need to make the most of my weekends combining self care and family/friends. I really do love fall and the holiday seasons. Here’s to making the most out of life.

Ménière’s disease

So I have a Ménière’s disease it is a disease of the inner ear that causing vertigo, ear ringing, ear pain, ear pressure and hearing loss. For the last five years I have been struggling with this disease and there have been quite a few times I thought it would win. But about 7-8 months ago I started seeing a new ENT who recommended steroid injection into my worse ear. It would stop the vertigo but it would also cause my hearing loss to accelerate in that ear. And believe it or not I said yes without much thought to the injections. I knew I would be going deaf in that ear anyways that if there was a glimmer of hope my vertigo could be controlled and allow me to live a “normal” life I was willing to sacrifice my hearing.

Now that certainly doesn’t mean I am ok with going deaf. I am not. I try to be positive about it and not get down about it but I will never be ok with it. But that’s ok too. I think if I was ok with going deaf I would be giving in. Do I know I will be deaf in one ear for sure within 5-10 years, yes I sure do. I am not going to lie to myself about my prognosis. However I am still going to be mad about it. I am still going to struggle with learning to cope with it. And now after my 3rd injection in my left ear I am really noticing my hearing going in that ear. And that is very hard for me to accept.

However I still truly believe I made the right decision with this treatment. The fact is life is not fair and dealing with a chronic disease is hard AF but I won’t let it win. So yes I will still cry when I think about my new life but I won’t let that cloud stay forever over me. I want to enjoy my life and be the best person I can be. I don’t ever want to be seen as bitter. I know there are worse things that could happen to me. So while I am definitely mourning the loss of my hearing I will continue to try and make my life worth it because deep down I can overcome this disease. It will knock me down but I will get back up every time.

random photos

Here are some random photos I have taken over the past few months. A couple from Vermont trip with my niece Ani. A few of the Doctor, my demon kitty. And some from this weekend, apple picking with both my nieces.

Fall is here

I for one am thrilled fall is officially here. So much to look forward to… Apple picking, soup of dinner, cuddling up on the couch with the cats and a book, the leaves changing and sweater weather. This girl is super excited about fall. And maybe just maybe I will post on here more.

Struggles of life

Lately I have been avoiding posting on here because I don’t like admitting my struggles. However I know the only way to get better is to face all my struggles head on and stop hiding and start working on them.

So first of all I have struggled with mental illness my whole life, I spent 10 years misdiagnosed as bipolar, the medication they put me on literally drove me crazy, my life was an absolute mess, and I hated myself. But then in my early 30’s I found a doctor who finally listened to me. I was diagnosed was bipolar with no mania other than insomnia and racing thoughts. Now I know my insomnia stems from a rape when I was 18, but I have dealt with that and know the insomnia will be around but I can handle it. So that doctor listened and realized I was clinically depressed but the bipolar medication had caused me to get worse, I heard voices due to it, saw things that wasn’t there because of it, I wanted to die because I saw no hope for my future. But then over the course of a year I was taken off those medication and put simply on an antidepressant to help my clinical depression and anxiety. Over the next ten years my life changed, I found I had hope and finally saw a person in the mirror I didn’t totally hate anymore.

However looking in the mirror has never been easy for me, I suffer from body image issues and am anorexic. And most people would look at me now and say how can you be anorexic, you weight way more than you should. Well that’s because I am not actively anorexic at the moment. I refuse to diet because I know I will spiral out of control. And the last time that happened I ended up weighting 93lbs and having massive health issues due to my restricting my calorie intake to 250 a day. Yes I said 250 a day. And what is the saddest is I can still look at the pictures of me at that weight and I still see imperfections, because I don’t see my body like I should. So while I have been able to keep my anorexic under control I have struggled with my weight. I have no thyroid due to a medical issue and it’s hard to keep my thyroid levels under control, as due to my being very crappy at remembering to take medication.

My life seems to be filled with medical issue after medical issue. About 5 years ago I though I was finally getting everything under control and finally getting to a place I wanted to be and then I was struck with vertigo. Now I had had vertigo numerous times so I went to the doctors to get medication and they referred me to an ENT who quickly saw this was not just vertigo. So after many tests I was told I had Ménière’s disease which causes vertigo, ear pain, ear pressure, balance issues, and hearing loss. So over the next few years I had to come to terms with a new normal for me. I moved back to Rochester to be around my family so they could help me when this condition knocked me down. My job has been great about it and I am lucky for that. But it was spiraling. I was dealing with horrible bouts of vertigo 3 to 4 times a week, barely able to function, I was ready to give up. I was unable to function and going deaf, I saw no hope at the end of the tunnel. But then my PCP referred me to a new ENT in the area and he suggested steroid injections into my inner ear to stop the vertigo. This treatment has been life changing, I now have very mild vertigo spells and them rarely lasting more than a day, and those days are getting rarer. He and I still need to figure out the best amount of time between doses but I have a glimmer of hope again.

So just when I had a glimmer of hope again, I injured my knee, I was so scared I was going to need surgery again and I hate being stuck in my house and not being able to move normally or go to the gym. After getting my Ménière’s under control I finally hoped I was going to be able to get back to the gym, get back in shape and I know all those things will help my mental health but then I blew my knee. It crushed me, I was struggling and truly didn’t know what I could do. But I talked to my mom and I admitted my mental health had been struggling for a long time. And everything I was doing to get it under control it wasn’t working. I was struggling to get out of bed, find no joy in anything, crying often, sitting in the silence and dark by myself hiding from the world, I knew I needed more help. So I got into see my PCP and she agreed on upping my dose of Prozac as I was on a very low dose. This pleased me Prozac has been the only antidepressant that worked and gave me no side effects. So I am one week one of my increased dose and while I haven’t noticed a change I know it can take up to 4 weeks for it to work. I am also going to try light therapy as she thinks this may be seasonal effective disorder as well.

And then yesterday I finally saw the knee surgeon who replaced my ACL 5 years ago, I had nothing torn but a lot of arthritis in my knee, which runs in my family so that’s not surprising, and while nothing was torn I had sprained my knee and that will take time and work to get better, so he injected my knee with cortisone and I will start PT very soon.

So I am once again seeing a light at the end of the tunnel, I am finally hopeful things will improve and yet I know I will always face struggles, that’s life, but if I refuse to give up I will be ok. I will be ok because I am strong enough to handle this, no matter how weak I feel, I have gotten this far, I can keep going. I will be ok because of my family, my mom and dad are truly my rocks, they lift me up when I can’t do it myself and they have refused to give up on me through all my struggles. They tell I am loved and make me feel loved when I think I am unlovable. They have put up a lot with me but they tell me it’s all worth it, because to them I am just who I was supposed to be and they are proud of me. That helps me a lot. My brother still texts me every single morning to tell me he loves me, he started this after a suicide attempt many many years ago and he never lets a day go by without telling me I am loved. He is someone who I can be honest about my life with and he truly has never judged me, he has saved my life more than once and I am forever grateful to have him as my big brother and one of my best friends. And I will be ok because I have friends who are like family to me. I live in the same complex as two of my best friends and their two kids, who help cheer me up and keep me going on my dark days. I can tell Katie the darkest thoughts I have and she hugs me and tell me they are ok to have and I will be ok. She reminds me I am not my dark days and thoughts, they are a part of my but they do not define me, she reminds me that I am loved and worthy of love. My friend Sheryl is like a big sister, she calls me on my bullshit and reminds me I am a good person in spite of my fault. She checks on me and reminds me that I am allowed to be annoyed by my health and struggles but that it’s worth it to keep going. She lifts me up when I feel lost and has truly changed my life by being in it. I have so many others I could mention who make my life worth it… Lessa, Ani, Mia, Gabe, Randy, my coworkers and friends near and far, they all remind me that it’s worth it to get through the struggles.

So while life isn’t easy I do know that no matter how dark the days feel, better days are in the way and it’s all worth it. Life is worth it, I am worth it. So thanks for listening to my struggles and know you are worth it too, and never let anyone or anything make you feel otherwise.

Jes

Duck

My parents got me a tiny rubber ducky luck charm earlier this year… here are some of the Duck’s adventures….

The Duck went to Vermont

I take work very seriously

Duck and Sestra

Bear and the Duck

Leila and the Duck

Vermont

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