Skip to main content

Always there for me

When I was growing up and I was at the doctor more times than I could count, I realized how lucky I was to have the parents I have.  My mother took days off weekly to drive me to Boston, sit in the waiting room with me, hold my hand during tests and comfort me when I cried in pain and frustration. My parents fought time and time again for an answer, for diagnoses and for insurance companies to cover surgeries for me. It was a headache for everyone involved but they never once gave up on me.
As I got older, I moved to Florida and back and had two children and they still helped me through everything. There has never been a time when they weren’t there to pull me out of a bad situation, help me financially, medically or emotionally. I will never be able to tihank them enough for what they’ve done.

I’ve watched my parents for years take care of each other. Yes, I can be independent and do things for myself but the thought of having someone love me and be by my side through good times and bad is something I always wanted, just like my parents. 

When I met Jim, I knew that he would help me through so much.  Let me just tell you a little about him, and I’m sorry if you are sick of hearing it but I like to brag a little. 


He wants me to get better. The other day when I was complaining to him about my dystonia, he called Medtronic himself. He researched doctors who could help me and sent me a list. He’s gone above and beyond in helping me organize the walk, get sponsors and spread the word. He has done enough research to be able to know how my entire DBS works, and I have no doubt he knows more than my doctors. He’s worked on my car and let me use his truck for an entire week while he drove a work van because my car is broken down. He has loaned me money when I can’t afford stuff like food and gas. He has opened my door, driven me to appointments, and been amazing to my children. Every day, this man brings a smile to my face. He makes me want to be a better person. He makes me see the beauty in the world and enjoy the little things in life. Life is extremely difficult but with Jim by my side, I know that I’ll be ok. 

Comments

Post a Comment

Popular posts from this blog

When Pineapple socks aren’t enough

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc...
Post a Comment
Read more

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 comments
Read more