Okay ladies and gents, I need some feedback.
I have Generalized Dystonia. It is some visible in my neck and also pain some same side in chest. My Neuro wants me to get the botox. Its tomorrow. I don't see why I need to waste money we don't have on something that is not twisting or turning and rarely hurts. He says you treat it before it gets that way.
Please give me feedback. I have been struggling inside as the days get closer to it.
I had gobs of blood work last week. I may have Mitrochondr…
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Added by Deanna on November 17, 2009 at 1:34pm —
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Headaches, one finally ends and another begins not far behind.
I did nothing big today other then get out of the house; had lunch with my son, went to the local college to get him set up for classes, bought much needed groceries and whosh, the headache I have been trying to get rid of.
Oh and the throat spasms are back...I hate them most of all. It hurt to even speak, makes them worse. Then feeling the spasms in my cheeks, so ridiculous!
My son says I keep repeating stuff I had just told him.…
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Added by Deanna on August 26, 2009 at 11:25pm —
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I might have asked this before and if so, I apologies. I don't remember if I did.
Does Artane make people extremely drowsy, out of it, drugged or is it the Dystonia? I can't figure if I need a different med or is its the disorder.
Deanna--offical General Dystonia..head to toe...really bad throat spasms!
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Added by Deanna on August 12, 2009 at 10:42pm —
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Can throat spasms cause a very sore throat feeling? I have had them increasingly and my throat is so sore. I have also discovered if I get upset about something, it starts spasming also. Other then never being upset, is there any thing to calm the spasms in my throat?
Deanna
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Added by Deanna on August 10, 2009 at 7:10pm —
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Today, I felt normal. Normal? Yes, ok, my old normal. The normal I used to be, before Dystonia. The normal I'd love to be again. I have heard that your health is priceless. Oh how true that statement is.
My mom has said,"A degree is something nobody can take away from you." But, health, well, I wish it were true about my health.
I was never driven to be a career woman or do anything in the work arena. But, I was looking forward to a career once my kids were raised....but, God has another plan…
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Added by Deanna on August 7, 2009 at 12:34am —
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Dystonia, I wish I never heard the word.
It may wake you up even if you are not ready to be woke.It may use a 'quiet voice' to wake you like a child whispering to its mother or it may scream at you as the pain itself shows in your entire body. It could wake you with a rythm, yet the rythm is a off beat spasm from head to toe.
Can I go out today or will the sun lead to a migrane? The child does want to go out and play in the sun and water, yet the parent knows one must restrict the outdoors sin…
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Added by Deanna on August 5, 2009 at 12:48pm —
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Driving 6 hours, can't do again, not at this point. As I lay down to sleep Friday night, 'it' shocked me...it, nerves. It was if I had stuck my finger in a high powered voltage.Starting at my toes and boom, straight up to my throat. A infamous, cervical spasms. Scary stuff when that happens for the first time.
I found my 20 yr old lamaze breathing helps for any kind of pain from the discomfort of a yearly pap and living with Dystonia. I got nauseated and took till about 2 a.m. to get to sleep.…
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Added by Deanna on August 2, 2009 at 11:00pm —
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My neck, right side.Oh shoot! Not the neck? Why can't this dreaded "D" word stay where it was....oh no, "let's move here, also."
Ok....someone has a voodo doll of me and I can guess two women specifically, or more who would LOVE to torture me like that. It has been extremely stressful lately. July was not fun at all with one exception; I must say, July 27th, I became a Grandma from 1,000 miles away.:(
I don't want to start visibly twisting....I can't dance so sure can't twist, ha-ha.
Blah bl…
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Added by Deanna on July 30, 2009 at 10:25pm —
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Today I wanted to spend time out and about. I met my mom at her house about 45 minutes away. She is a photographer and took our photos of a recent trip to Northern Europe, and made a power point type of album for us with music. I loved it! Over 1,000 photos of a 2 week trip to 8 countries. WOW!
Got home about 4:30 p.m. and went to church tonight with husband. I thought it was the last Wednesday of the month which is singing night. I have a horrible voice, but I love to praise God with it anyway…
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Added by Deanna on July 22, 2009 at 11:10pm —
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Warning: You don't want to hear it, don't read it.
I don't write these for anyone, but me. I have journaled since a child, its how I work out my thoughts.
Tired, so tired.
My dad had two more heart stints today and 2 last year. It was a major artery this time. The call it the'widow' artery. Thank God they found them.
My daughter is due this week to have a baby boy. She's not speaking to me though. It's breaking my heart!
I wonder, "Am I tired because of so much going on deep in my heart wit…
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Added by Deanna on July 20, 2009 at 9:48pm —
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Since when did Dystonia become a dictator of my life, my first waking moments, my day and going to sleep? That's the only time I can escape it, though it makes itself loud and clear in the morning. You know, my husband knows better then to talk to me first thing, but dystonia has some nerve. It doesn't even let my feet touch the floor in my jammies, and there it is.Please leave me alone!!!
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Added by Deanna on July 15, 2009 at 7:30pm —
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So I thought to keep my self awake today as my son and I ran errands I would skip my meds.I could barely keep my eyes open with the meds yesterday. Not a smart idea.But, I have never won a smart award anyway so nothing new there. DUH!
I think one of the hardest things is to not be thrilled my 18 year old son wants to go see a movie at 8:30 at night with old mom, but I declined. Sorry son.:( He is alot like me, sitting still is not our forte.
For those scared of the empty nest one day, it is no…
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Added by Deanna on July 14, 2009 at 11:20pm —
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I wish at 41 I could be doing all the things I have been able to do till this point.
I wish I never knew or felt Dystonia wipe me out of energy and fill me with pain.
I wish I could mow the yard and trim all before my hard working hubby got home from work.
I wish I could be at church tonight instead of being here in the coolness of my home alone.
I wish I could be as strong as I ever have been when nothing stopped me.
Wishes don't always come true forever. There seems to be a time limit on…
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Added by Deanna on July 14, 2009 at 11:49am —
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Relaxation is so important for everyone! Relaxing does not come "naturally"
as many people assume it should. It is actually a skill that needs to be
learned and practiced regularly. The following list is simply a palce to start
as not every suggestion will work or is practical for every person.
* Have a comfortable place to rest outside and enjoy nature
* Refuse to argue about things it usually isn't productive
* Start Christmas shopping in March
* Give other family members more responsibilitie…
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Added by Deanna on July 12, 2009 at 4:27pm —
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Today is the day that I spoke with my daughter. She is 1,000 miles away from us.We were able to talk about some things that happend a few weeks ago; time for healing and acceptance.
We had seen her last, with her brother before Christmas when she was just a few months pregnant. Now, she is due this month, in a few weeks.
My husband and I flew to VA for her baby shower. Mixed company shower. Men finally got to experience a baby shower. Her dad, and step dad and brother. A family affair.
I trie…
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Added by Deanna on July 7, 2009 at 4:32pm —
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Okay so, if its 1 minute to midnight that makes it the 4th, right? It's midnight somewhere.
I don't remember last year on this holiday and honestly, I can't remember alot anymore. It's scary. I try to fake knowing thngs when I am talking with my hubby cause I don't want him to see how foggy I feel, how the pain seems non-stop. I want him to think I am the same old Deanna and not someone who is forgetting, hurting and abit scared. I do not want to be a burden to him and him to need a break from…
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Added by Deanna on July 4, 2009 at 12:28am —
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I got out of my pj's the first time this week, alittle make up and off to grocery shop. No headache at the moment....what a relief. My computer for some odd reason would not start for a few days and we have waited for a call to fix it. Out of the blue, I tried it yesterday and there it was...working. Nothing changed with it. Makes no sense.
I have alot of making up to do with blessing my husband as much as he has been here for me thru the hours of crying, pain both in my heart and my body. So,…
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Added by Deanna on July 2, 2009 at 2:27pm —
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I do not know if it was the severe head aches of the past two weeks with tempertature up to 103 or the flying back and forth to Virginia two weekends in a row or maybe at 41, you are suppose to feel like your 91 and ready to rest? No matter if its one single thing or all put together I am exhausted with so much more then Dystonoia.
I am exhausted with feeling weak and allowing even family members to walk right over me again and again. You can tell by the size of each shoe whose belong to whose…
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Added by Deanna on July 1, 2009 at 9:11pm —
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Along with the migraines I have had the past 2 days, temp over 100 off and on and now finger pads numb, I am alittle scared.
My Neuro is out of town till first week in July. I never got mirgraines before, awful!!! Here its 84 degrees and I have on two pairs of pj's.
Suggestions please...Deanna :(
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Added by Deanna on June 24, 2009 at 8:00pm —
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Yesterday, I stayed put and just went outside to get the mail and a few moments picking tomatoes off out little garden.
Shortly after a headache, no a migrane. I never knew the difference, but I sure do now. Awful! By late evening I began running a temp. This morning, I feel spacy and like I am in a fog. I think its interesting that my migrane was only on one side of my head, the right side.
I love thunder, lightning and wind! I love to watch the skies change and clouds wip about during a hurr…
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Added by Deanna on June 24, 2009 at 10:02am —
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