So, How are You Doing Today ???

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Permalink Reply by beka on January 18, 2009 at 4:28am

I figured I would begin this thread. How am I doing ? It seems that the past 10 to 12 weeks have been long. Too long. And frustrating to a great degree as I have had to wait that amount of time for DBS battery change Approval from the Medical Facility. I think they kept running my neurosurgeon around in circles. Finnaly, I sent an email to the top person, warned them about the use of the media and legal rights and, low and behold, within 24 hours I had approval for the Battery Change, scheduled Feb 5th. Relief...
I can tell that my battery doesn't quite have that much juice in it anymore and symptoms are increasing. After a 3 day work week, I end up collapsing in bed when I get home on Mondays and sleeping the entire day. Sometimes, well into Tuesdays. With neck pain increasing. As time as goes on I have questioned more and more on whether I should go back to MyoBloc or wait for the PurTox trials that are coming our way, or even have the entire system pulled. It just seems increasingly more and more difficult to live with an implantable device.
It was easy to go in and be shot up every 12 weeks. Life went on. Now, one has to think about Ipods, magnets, environmental effects and changes. Even the weather. The weather has been soo Cold that entire body stiffness is becoming an issue for me. Anyone else ??? I don't want to crawl out of bed...! zzzzz...zzzz..
I have had to increase my Klonopin daily doses to at least 4 mgs per day in divided doses. No side effects. Tolerance - YES.
As we also move forward towards the Inauguration this coming week and the entire issue of CHANGE, it does make me wonder what needs to change in dystonia to MAKE THINGS HAPPEN. Things just seem to be occuring at a slow pace and now with even less people contributing to nonprofits financially, who the heck will care about dystonia?? Really ?? Any truth in that line or assumption ???
Am I the only one thinking this or are others beginning to worry. The economy is not good. I'm beginning to worry.
It also doesn't help to have had a GI bug - no peanut butter- for a few weeks. I feel like I have been hit with the Noravirus one gets on cruise shifts. of course, all this aggravates dystonia and won't make it go away...
ICU work has been busy, I have been bitten, beaten, hit, yelled at by alcoholics entering withdrawal. Not too many pleasant assignments. Only leaving me more tired by the am...
But, now counting down to Feb 5th with mixed emotions.
So, HOW IS YOUR DAY GOING TODAY ? Share..
beka

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Permalink Reply by Rosemary on January 18, 2009 at 1:19pm

Well, it is a beautiful day. I am still hyperthyroid, which means Dystonia is pretty bad. What is so frustrating is that it effects my right neck/clavicle/shoulder/arm so much with such searing pain- so hard to write, use pc, eat, or cook. This AM, I placed Muscle Simulator pads in worst area and put an ice pack over it to see if it calms things. I am so hoping to be able to take a class this semester; sure hope things calm down soon. It has been two weeks since they dropped the thyroid dosage, 6 weeks til they re-evaluate. I was diagnosed with a thyroid condition in 2006 (attributed to too much inflammation from too many neck surgeries), and we still have not gotten it balanced!

This week I got a letter from my Disability Insurance offering to "buy out" my term (I have been disabled since 2003, after the failed surgeries)- in other words give me a lump sum and discontinue monthly payments. I don't have to take it, which is a good thing since it is a very unattractive offer. Can't imagine why any one would take it.

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Permalink Reply by beka on January 19, 2009 at 10:01am

Rosemary - If your Endocrinologist can't get your thyroid balanced in a 2 year period , time to find a better one...depending on what type of thyroid disease you have - Graves, Hashimotos, etc...

beka

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Permalink Reply by Robin Wood on January 18, 2009 at 10:28am

Great topic Beka, thanks for posting :)

Today I feel all sorts of spasms wanting to creep up, I am trying so hard to quit smoking. My little nerves feel a bit frazzeled ... don't know if I'll be able to go the entire day without one today. Two days ago I did really good, yesterday I had to go bum one, today I feel like I need to go buy some just to appease my dystonia before I go into full blown spasms.

Robin

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Permalink Reply by Rosemary on January 18, 2009 at 1:06pm

Oh, Robin. Please try not to give in to the cigarette. We are all rooting for you. I was under the impression that smoking was as bad for Dystonia as it was for everything else. Does going for a walk help? Is there anything we can do to help you with this?

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Permalink Reply by bentnotbroke on January 18, 2009 at 3:24pm

Don't buy the pack, Robin. Take it from the voice of experience...you'll only feel obliged to smoke the whole thing, & the cycle begins again...I have been smoke free since '01 & while it sure was no picnic I haven't looked back. I feel SOO much better, stronger, dystonia notwithstanding...I don't even have those 'smoking dreams' anymore. Stick to your guns, girl, you can do it! I watched both my folks die of smoking related illnesss before giving up the habit. I have never seen or heard of a person dying from dystonia.

Good luck, & if it is a setback, don't beat yourself up, wait a bit & try again.

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Permalink Reply by Robin Wood on January 19, 2009 at 4:19am

Yee ha !!! I held strong. I fixed myself a really healthy breakfest and went back to bed. Taking one hurdle at a time even if it means staying down and quite in order to manage the spasms.

Thanks all for the support :)

Robin

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Permalink Reply by beka on January 19, 2009 at 10:09am

Have you tried the drug Chantix , Nicotine patches ??? Or just going cold turkey , but I must admit I have wondered about the effects of nicotine on the brain.

Nicotine and the Brain :
For centuries, people have chewed and smoked tobacco, which comes from the plant nicotiana tabacum. The reason tobacco is used by so many people is because it contains a powerful drug known as nicotine.

When tobacco is smoked, nicotine is absorbed by the lungs and quickly moved into the bloodstream, where it is circulated throughout the brain. All of this happens very rapidly. In fact, nicotine reaches the brain within 8 seconds after someone inhales tobacco smoke. Nicotine can also enter the bloodstream through the mucous membranes that line the mouth (if tobacco is chewed) or nose (if snuff is used), and even through the skin.

Nicotine affects the entire body. Nicotine acts directly on the heart to change heart rate and blood pressure. It also acts on the nerves that control respiration to change breathing patterns. In high concentrations, nicotine is deadly, in fact one drop of purified nicotine on the tongue will kill a person. It's so lethal that it has been used as a pesticide for centuries.

So why do people smoke? Because nicotine acts in the brain where it can stimulate feelings of pleasure.

Your brain is made up of billions of nerve cells. They communicate by releasing chemical messengers called neurotransmitters. Each neurotransmitter is like a key that fits into a special "lock," called a receptor, located on the surface of nerve cells. When a neurotransmitter finds its receptor, it activates the receptor's nerve cell.

The nicotine molecule is shaped like a neurotransmitter called acetylcholine. Acetylcholine and its receptors are involved in many functions, including muscle movement, breathing, heart rate, learning, and memory. They also cause the release of other neurotransmitters and hormones that affect your mood, appetite, memory, and more. When nicotine gets into the brain, it attaches to acetylcholine receptors and mimics the actions of acetylcholine.

Nicotine also activates areas of the brain that are involved in producing feelings of pleasure and reward. Recently, scientists discovered that nicotine raises the levels of a neurotransmitter called dopamine in the parts of the brain that produce feelings of pleasure and reward. Dopamine, which is sometimes called the pleasure molecule, is the same neurotransmitter that is involved in addictions to other drugs such as cocaine and heroin. Researchers now believe that this change in dopamine may play a key role in all addictions. This may help explain why it is so hard for people to stop smoking.

How's that for a quick lesson ???

beka

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Permalink Reply by Trudy on January 18, 2009 at 4:40pm

Overwhelmed...the drug induced loopy feeling combined with the extreme fatigue due to my required 'drug holiday' from taking my narcolepsy medication on Sundays is making getting anything accomplished quite an effort.

Frustrated that I have a financial fiasco swirling around me and seeing (even through my foggy head) time ticking away and not receiving answers or even direction from the only people, professionals I know who to ask. Here is but a slice of what I mean...I currently have very little money on hand to live on. I do have investments (401K and minor investments) I am required to liquidate in order to qualify for SSI, which is fine, I understand. Because I am in the process of a home foreclosure, one of the answers I am trying to obtain through my 3 lawyers is, am I correct in my understanding that IF I open any account (ie savings, checking) the mortgage company can legally take the money contained in these accounts? If this is true, then any money I liquidate from my investments to live on until I can receive SSI will or could ultimately be sucked up by my mortgage company. I live in a very small town, imagine Mayberry minus Opie, the only way I can 'cash a check' is by endorsing it and having the money then deposited to my Father's account, however, if I would do this with any investment withdraw he will be taxed on this money as income. Actually the only reason why I have been lucky enough to do this(while also paying the fee) in the last few months with money given graciously by friends, is because my Dad has been 'a valued customer' with this bank since 1957!

I may very well be overlooking something or an easy solution due to 1) my own ignorance in such matters or 2) said loopiness from meds.

I am trying to limit as best I can, using my Father's money. Especially because he lives on a very small pension from being a tool and die maker in a small family owned factory as well as the fact that he, over the holidays, paid for my homeowners deductible after a pipe burst X-Mas eve flooding my home and the 3 adjoining condos.

Through all of this my symptoms have also taken some turns, some more welcomed than others. One thought I have clung to through it all is something Will Smith said when asked by an interviewer how he and Jada keep their marriage going? He said 'We just don't allow divorce to be an option.' For me, I don't allow giving up to be an option. I will admit though, I do 'give in' to much needed naps though. :-)

As much as I try to avoid the question, 'how are you today,' today I welcome the opportunity to let go of some of the pressure in my head by sharing...knowing someone is (virtually) listening and I am being heard. Not necessarily asking for anything more than that....Thank you....Trudy

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Permalink Reply by beka on January 19, 2009 at 10:10am

Everyone is hearing you- Trudy. Don't be ashamed to share what you feel today...
beka

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Permalink Reply by Rosemary on January 19, 2009 at 11:42am

Trudy:

What about calling your Congressman- Social Services rep., perhaps to see if they can help out with the SSI?

Is it SSI or SSDI? Are you trying to get on Disability?

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Permalink Reply by Trudy on January 19, 2009 at 12:13pm

Hi Rosemary,

I currently have a lawyer working on my appeal for Social Security Disability. I was denied November 2008. After I submitted my original application I also went to see a representative at my congressman's office. They would send me updates they received as my case progressed. I have thought about contacting them again regarding this situation as well.

My above post is in reference to qualifying for SSI -- which at this point I don't qualify because of my investments and 401K.

I did finally receive a response from one lawyer and based on her assessment, I am going to proceed with withdrawing my investments. I still think there is a slim possibility I may lose some of it to the mortgage company but I will take the chance since either way, me using it or me losing it, is the only way I can ultimately qualify for SSI.

Thanks for your response.
Trudy

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