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Showing posts from 2020

Love & happiness in 2020

  Have you ever watched a movie with a love story and thought that the relationships on them aren’t ever what they appear to be? In real life, love isn’t something that’s easy, or something that makes you so happy it still makes you crazy years after meeting someone. I thought love became a habit overtime, you just become used to each other and go through the motions of each day together.  At the risk of sounding cheesy, I found that movie romance in real life. After 3 years and 3 months I still get butterflies when he texts me. I still watch for him out the window when he’s coming home from work. We still kiss goodnight and say I love you 150 times a day. I look forward to my time with him every single day and never get sick of it. I love the way he looks at me, the way he protects me, treats me and the way he loves me.  I know people get sick of hearing it. A lot of people don’t know how to act around happy couples but I honestly don’t care what anyone thinks. I will go on and on for

Fears

  I have had some fears in my life. I was scared to give birth and scared to be a mother. I was scared to get married and scared to get divorced. I was scared to go on a first date and have a new relationship. I was scared to fall in love but once I did I was scared to lose that feeling. I’m scared of being on a bridge in my car. I’m scared of saying no. I’m scared of hurting people. I was scared to have brain surgery and didn’t think I was going to wake up. I have an unrealistic fear of a raccoon attacking me. I’m scared to share my opinion with most people. I’m scared of big crowds and feeling out of place. Im scared of losing the people I love and I’m scared about where I’m going to live. Many of these fears are things I live with every day but don’t talk about. Many of them are things I’m working to get over and live with.   The thing that has scared me the most is dystonia in my abdominal muscles. When my stomach tightens up, I can’t catch my breathe and it’s hard to talk. My bigg

Before you judge me, make sure you’re perfect

I’m overweight. I’m not happy about the way I look but I’m happy with my life.  Since Covid has attacked and pretty much made everything impossible, I have had a hard time. It started with the homeschooling and all us of trying to adjust. Then being told Cody was doing summer school. He does school on zoom three times a week, speech on zoom three times a week and speech outside of the house twice a week. He hates the zoom meetings and sometimes struggles to sit through it. Hailey gets bored when he’s doing it. I can’t bring them anywhere because they need masks and they’re little and hate them and it’s hot. I don’t have time to go grocery shopping, I don’t have time or motivation to work out. My dystonia is getting worse by the day and I’m pretty much just a fat crippled mess. I’m trying to think positive but it’s especially hard when people are judging your every move. People I don’t even like so I don’t even know why I care. What makes you so perfect? Because your healthy and can wo

Scared

When I had my DBS put in last year, for the third time, I had a positive attitude that it would help me but I also was having bad dreams that something bad was going to happen.  I was anxious and scared the morning of my surgery but I went into the OR feeling pretty hopeful.  When I woke up in the recovery room, I was so thankful that I was alive.  I didn't know if my DBS was going to work, but I knew I made it through the surgery.  Shortly after having my DBS turned on, my dystonia symptoms seemed to be improving.  I was so excited to finally get some movement back and feel less pain.  A few months after seeing my symptoms improve, I was told what my surgeon really thought.  She told my mom and Jim after the surgery that there was a lot of scar tissue and she wasn't sure if it would work.  It didn't seem to help in the OR when she turned it on like it did the first time I had it done.  She did not think it would work this time.  I was so ready to prove everyone wrong with

Never give up

Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it. I’m truly trying. It’s been about a year since my first hand surgery and I had hope I’d have that one surgery and my hand would be normal. It wasn’t. 7 months later I had another one to tweak what was done and I thought for sure it would be 100% after that one. It wasn’t. 3 months later I had my third surgery and said to myself, “this is the last one, it’s going to work!” It didn’t. Over the last 4 months, my hand has progressively gotten worse. I now have no feeling in my thumb or index finger, all fingers are hyperextending, severe pain in my forearm and a shock like feeling in the top of my hand. There is nothing I want more than to just give up right now. But every time I think that’s what i want to do, I realize that’s not who I am and there is no way I will just be ok with everyone telling me there’s nothing that can be done. I

Done

At what point do you give up?  When do you just stop with doctors and accept that this is how you were supposed to be? I think I’ve hit that point. I am tired of the doctors visits, the therapy appointments, the never ending supply of splints (I mean at this point I could open my own medical supply store). I am sick of the laughing and the guessing, the 11 scars I have all over my hand. I’m sick of the looks I get when I can’t grab something with my left hand, and I’m sick of spilling something almost everyday. I’m sick of looking at my beautiful engagement ring and thinking how much better it would look on a normal hand.  I hate that I can’t do Haileys hair and I can’t hold Jim’s hand. I can’t do the dishes, or laundry or grocery shop.  But the thing I hate most is the anxiety it causes me to constantly worry about how to make it better. I’ve come to the realization that maybe it’s just not going to ever be normal again and I’m ok with that. It’s time to move on and accept this

My left hand disaster

Friday was a hard day.  It was the day I had been waiting for since my surgery... to get my cast off and find out what was done to my hand.  My arm was itchy from the cast and I couldn't wait to have relief.  When I got there, the medical assistant cut the cast off and removed my stitches and almost immediately I wanted the cast back on. My arm started to have spasms and the pain was horrible. I got really light headed and nauseous then ended up laying down on the bed.  I started to cry because my arm felt dead, I couldn't lift it and I had no feeling in my thumb.  The doctor came in, laughing, and I started asking questions...What was done? How long will the pain last? Will I get the feeling back in my thumb? The answer to every question was "I don't know." I burst into tears again and went to OT to get a new brace made.  I cried while I walked over there, mostly because of disappointment but also because of pain and the fact that I had to use my other arm to ho

Hands

A few days ago I went in for my 16th surgery. It was my third surgery on my hand. My hand is so screwed up and will never be normal again. The reason it got this bad was because it took a year and a half for someone to realize my DBS was broken. It makes me sick to think about it and to know that if it was fixed right away I wouldn’t be having these problems with my hand. I had a nerve block and at the end of the surgery it wore off, even though the nurses are telling me it worked great. I was screaming in pain because I could feel everything that was happening. I could feel someone grabbing my fingers that they just cut up. It was horrible. They ended up giving me pain medicine and sending me home. Last night I realized I have no feeling in my thumb. I’m hoping this is just part of the healing and I’ll eventually get it back.    The pain is getting a little better each day and I know I’ll be fine but I don’t know if I’ll ever really be able to use my hand normally again. I’m tryi