2015 and all the little things

So it has been a very interesting few days, just before the start of 2015. So many good things as well :)

I found a support group for Dopa Responsive Dystonia, and wow it has been such a big help. It is nice getting to talk to people that truly understand what you have gone through and what you are going through! I had a very nice conversation with one of the members and I will have to say, that yes it was just an online conversation, but for me it was so much more than that! It was just nice sharing videos and just talking because I have felt so alone at times when I would try to explain it to my friends. When I would they would say things like, “Oh Dawn you’ll be fine I am sure it is just stress, don’t worry.” I know they meant well, but hearing stuff like that over and over again leaves you in a very lonely place. I eventually really stopped talking to a lot of people because well…. I was alone. I do have a few close friends I talk with though. Over the past years I have lost contact with so many people, even my family members, but I am now beginning to come out of that shell of being silent.

Another interesting thing that came out of the group is someone who has DRD and had been misdiagnosed for 33 years with CP. I had watched her video online and thought wow, this lady is absolutely amazing and so positive! And it was nice that I actually got the chance to tell her how inspiring she was! I have been reading through her blog and it is so inspiring to me! In her heading she has “It’s about the little things.” I thought that was really neat because I am always saying “Its all about the little things in life!” “You can not appreciate the big things if you do not appreciate all the wonderful little things!” So seeing that gave me a warm fuzzy. The strength that she has and how positive she is, is amazing. I have also been connected to other peoples blogs and it is nice to not feel so alone and read that I am not the only one that has struggled and such. All I can say is wow, it is nice to not be alone!

So in one of my conversations I had mentioned some of the funny things my children have said to me as well as other people while I have been going through this and she suggested that I share them in my blog, so here goes!

In Regards to my Dystonia, things my children have said:

“You should be a fill in on the walking dead, because you look like one of the zombies walking!”

“You look like a Robot!” (Then they would make electronic robot sounds)

“I bet you could do the Robot really good!”

None of these comments upset me because I know they are just kidding, we all joke with each other in our home, and I actually thought it was funny and laugh with them.

While I was on vacation at Tangier Island I was using my cane (this was before my diagnosis) an older man came up to me and asked, “Why does a young lady like you have to use a cane to walk?” I looked at him, smiled and said “It’s my portable stripper pole!” I thought him and his wife were going to fall over laughing ha ha. Then I asked him, “So why do you have a cane?” He replied, “It’s to fight the ladies off!” We then had a nice conversation and I explained I was not sure at the moment what was wrong.

Most of the time people just stare and not say a word. Honestly I would rather someone just ask me. I do not think that there is anything wrong with having a little bit of a sense of humor, I mean I rather make a silly joke than be bitter about something that I can not help. But I will admit when I first used it at work, I did get kind of tired of people saying stuff, and asking constantly, at times it was literally to the point it was rude. There was one guy that would ask me about it literally every single day! LOL oh well

Here recently I woke up from a nap and had forgotten my medication. My husband and son seen me walking through the house and it was around 1pm in the afternoon. My husband says loudly, “Dawn! How much have you been drinking! Its barely past noon!” My son chimes in saying “Ya mom your walking like a lurker!, How much did you drink!” I let them both know that I had not had anything at all! And that I just did not take my medication. Then they felt bad, but I told them not too. In their defense I had a wine glass in my hand that I was taking to the kitchen from the night before lol, so I am sure it looked that way ha ha. All I can do is laugh about it.

Well I just wanted to share some positive things and funny things that have been going on. This morning was kinda hard, I woke up and could hardly move my entire body, I could move it but it was very, very slow and stiff and was very painful, it was actually the pain that woke me. And I was getting the horrible choking feeling in my throat. I was able to wake my husband and he was kind enough to get all my meds for me and give me a nice massage, so sweet. This is something that has happened before, but I suppose I was not expecting it to happen, but I guess it will still happen from time to time. What I have learned from the support group for DRD that even if you are on the medication, stress, high protein diet, lack of sleep and over doing it will cause symptoms.  So here I was thinking ALL my symptoms would just be gone, but ummmm I just have to make sure I take good care of myself. I am sure I will learn a lot more as I read through blogs and the support group page for ways not to over do things and etc.

So this new year of 2015 has started with a new perspective about all of this, and I am feeling so much more hope everyday. It is not the end! It is the beginning of something new! I want to help inspire others, encourage others and just live life! As I always say, it is all about perspective! And it is all about the little things in life.

Happy New Year World!