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Aug 12 2009

The Old Vaccine and Vaccinations Debate

vaccination needle

With the end of summer fast approaching, parents everywhere are beginning to turn their thoughts to the back to school madness that accompanies this time of year. Along with the purchase of school supplies and clothes, many parents take the time to make sure their children are up-to-date on their vaccinations. For those living in my home state of Texas, a new vaccination schedule has parents especially concerned with the subject.

Now, I know the debate over whether or not a child should receive vaccinations is often an emotionally charged, heated one. Parents on both sides tend to be rather passionate about their decision and rightfully so. That is why this post isn’t about which side is right and which side is wrong. This post, like many others on Demyelinated Not Destroyed, is about education.

I found out about the new vaccination schedule from an e-mail that was sent from my children’s school. I have to admit, I was pretty annoyed when I read it. I don’t mind that the school sent the e-mail. I’m sure many parents appreciated it. What I do mind is the total lack of any information concerning the fact that parents have the right to waive vaccinations for their children. It also failed to mention or give a link to a website that lists the various side effects the vaccines have.

I firmly believe that if someone is going to go to the trouble of listing a vaccination schedule, they need to include information on the potentially serious side effects or a link to a website that houses that information. Most parents sincerely want to do what they think is best for their child. How can they when they don’t have all of the facts before they make that decision? Thankfully the internet has made it easier for parents to research such things but the onus shouldn’t be on them to seek it out.

Vaccines can cause permanent damage to someone. The flu vaccine has been known to trigger Guillian-Barre Syndrome or GBS which can be downright deadly. Some of them aren’t even all that effective. There are reports that the varicella vaccine is only about 70-80% effective. My oldest child had it and still caught the chicken pox eight months later.

The flu vaccine is even worse at about 20%. Many people don’t realize that in order for the flu vaccine to be ready on time for flu season, doctors have to begin work on it the year before. The flu virus replicates rapidly. It can also evolve into different strains almost as fast. This means that doctors working on the flu vaccine have to basically guess which strains to focus on and how it’s going to evolve from one year to the next. Since guessing is far from an exact science, they often get it wrong.

It is true that the likelihood that a child will develop a serious side effect from a vaccine is slim. Still, parents need to sit down and seriously consider how they would feel if their child suffered one of the more debilitating side effects that vaccinations can cause.

Before my youngest began school last year, my husband and I did just that. While my oldest children received their vaccinations on time, our move to a new state and the worsening of my health made it difficult for us to stay current on my son’s. After doing as much research as I could on the vaccinations he still needed and my CIDP, we sat down and discussed the pros and cons of getting him caught up on his vaccinations and how we would feel if he experienced a serious side effect from them. Ultimately, we decided the risks outweighed the potential benefits at this moment in time. Should that change, such as if someone in the community developed measles or polio, we won’t hesitate to get him vaccinated. Once he’s old enough to understand all of the risks and benefits involved, we are going to let him make the decision on whether or not he wants to get vaccinated.

The decision we made may not be right for you and that’s perfectly okay. What’s important is that you do some research and a heck of a lot of soul searching before you make that decision. In the end, I am neither for nor against vaccinations. I simply want people to be educated about them before they get their child vaccinated.

Since vaccinations are all about creating an immunity to a virus or disease your body hasn’t encountered on its own, you might want to check out the book “Defending Your Health Naturally “. As the name implies, it’s an alternative medicine book that aims to boost your immune system, decrease pain, increase energy, provide ways to reduce stress, and detoxify. You can read more about it at the link below.


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Aug 07 2009

Life or something like it

Published by kithlyara under My Journey Edit This

Tugger

 

Meet Rum Tum Tugger or, as he is commonly known around my house, Tugger. Tugger is a beautiful, two year old, blue tabby/Abyssinian mix who adores playing with water. What, you might ask, does Tugger have to do with my blog about demyelinating diseases? Quite a bit, it seems. Tugger is the main reason why I have not posted in awhile.

 

You see, one night, I fell asleep on the couch, curled up around my laptop. I hadn’t intended to fall asleep on the couch but it has been known to happen from time to time when my fatigue gets particularly bad. I was awoken from a rather deep sleep by a feeling of being wet. After the initial confusion of waking up wet, on the couch passed, I noticed, much to my horror, that the nearly full glass of water I had on the end table near the couch had been knocked over. The river of water ran down the table, onto me, the couch, and my laptop. Who do I see swaggering away? Tugger, quite pleased with himself, I might add. Needless to say, my laptop was hopelessly fried.

 

I had recently done a back up of my laptop, thankfully. I didn’t lose many files because of it. I also have a back up laptop but the thing is roughly five years old. It’s barely able to run more than one program at once nowadays. With the heavy system requirements most browsers have now, getting online and staying online for any length of time with it is tricky.

 

I have a new laptop now that I absolutely love! It’s faster than the one Tugger killed for me, which is always nice. I’m planning on getting back into the groove of a regular posting schedule. It might be a little spotty for the next couple of weeks but please bear with me. If there is anything anyone would like to see covered in a post or any other way I can help you out, let me know!

 


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Dec 25 2008

MERRY CHRISTMAS!!!

Published by kithlyara under My Journey Edit This

I want to wish all of my readers and those who happen upon my page a wonderful Christmas! On this busy holiday, may you be reminded of what is truly important: family and friends. Take time to love, time to laugh, and time to rest and be refreshed by those you hold dear.

Most of all, take time to help those around you who need it. Times are hard for many families this year. While we may not all have money to give, we all have the gifts of love, time, and talent. As 2008 becomes 2009, find a charity who supports a cause you believe in and find out ways you can help in their mission. Even an hour once a month can do wonders for the many charities out there. In helping others, you will find that you are really helping yourself.

And now, a Christmas poem. May you hold it’s message close to your heart all year through.

The True Spirit of Christmas
by Marajo Tenderass

Lots of people
Crowds everywhere
Rushing and pushing and shoving,
Going nowhere.
It’s Christmas time again
Have to get all those things done
Hustle, bustle, quickly,
We must beat the sun.
Must get this and must get that
Maybe this nic, maybe that nak
When did it happen?
When did we lose track…
It’s a race, yes it is
We are running, yes we are
But lets not forget
Before we get too far-
What is really really important
Doesn’t take much to figure out
Take time to love
and love from the heart.

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Dec 17 2008

Living with CIDP - Eventful Days

Published by kithlyara under My Journey Edit This

This time of year tends to get hectic as the holidays have a habit of bringing together loved ones and all of the the social events that go along with them. While I have had some of that sort of busyness over the past few days, I’ve also had other things requiring my attention.

Last Wednesday, I had to make a trip to the doctor to get antibiotics for a sinus infection.

Last Friday, I had a neurology appointment. The numbness, tingling, and reflexes are getting worse but my balance and strength are still doing well. I learned that sinus headaches are now being considered migraines because they both irritate the same nerve. As can be expected, my sinus infection has been giving me bad headaches. Since I have a history of migraines in general, my neurologist sent me home with samples of several different migraine medications to try.

Last Sunday, I strained my ankle. I had been sitting at my computer desk, typing, for several hours. I have a habit of curling my legs up underneath me whenever I sit down. The numbness and tingling I experience constantly causes me to lose all feeling in my legs rather quickly when I do this. Usually when I stand up after sitting like that for awhile, the feeling returns fairly quickly once I start walking. That didn’t happen on Sunday.

I went to take a step with my left foot. My body moved; my leg moved; my foot didn’t. Essentially, I wound up tripping over my foot. I caught my balance fairly quickly and managed to make it to the nearby couch by sort of lunging at it. Looking back, I probably should have just let myself fall. Because I didn’t, I put a lot of weight on the top part of my foot, which is probably what led to the muscle strain. The swelling has gone down but I have to admit, I was shaken by the experience. It’s the first time something like that has happened to me. I hate being reminded of what my limitations are.

Earlier today, I had an interview at one of the many nursing homes in the area for a CNA position. I don’t presently hold a CNA certificate, however they are giving free classes and will pay for the certification exam, which is awesome. The downside is the only available shifts are in the evening and overnight which would seriously restrict the amount of time I have to spend with my husband and children. So, I have some thinking to do over the next several days about whether or not the job would be right for me.

I had the beginnings of a migraine when I got home, so I decided to take one of the samples my neurologist had given me. I also took some Benadryl at the same time because my allergies were starting to act up. Boy, am I ever glad that I did! The sample I took had naproxen in it. One of the brand names for naproxen is Aleve. Naproxen is also derived from aspirin. I’m deathly allergic to aspirin.

About a half hour later, I was on the phone with my husband when my inner ear and scalp started to itch really bad. I mean, insanely bad. After a moment, it registered that I had had a similar reaction to aspirin several years ago. Immediately, I went to check the sample and discovered that naproxen was a main ingredient. Right about then, I started to cough, which is my body’s way of telling me that I’m having an asthma attack. I took some more Benadryl in an effort to counter the allergic reaction. Thankfully, it worked.

I know I should have gone to the hospital but I was home alone. Driving myself to the hospital wasn’t an option under the circumstances and I was loathe to call an ambulance unless I absolutely needed to. If the added Benadryl hadn’t worked, I would have.

I’m extremely careful whenever I buy over-the-counter medications. I know all the various names for aspirin and it’s various derivatives. I always scrutinize the ingredients list to make sure it’s safe for me to take. I didn’t check the sample because I thought my doctor would take my allergies into account when giving me the samples. Although, now that I’m thinking about it, his medical assistant is the one who got the samples for me. At any rate, I’m definitely going to read over the ingredients of any samples given to me from now on to prevent something like this from happening again.

Hopefully, that’s all the excitement I’ll have for this week!


Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International


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Dec 14 2008

Sunday Inspirations - Butterflies

As upbeat and chipper as I try to be for everyone, I would be lying if I said I don’t occasionally get saddled with my own feelings of depression and pity parties, particularly where my CIDP is concerned. Today was one of the days where I’ve been feeling particularly down for a variety of reasons, most of which have to deal with my disease. Then, I came across this picture:

Photobucket

For those who may not be able to see the picture, it’s of a simple butterfly on a blue background and says the following: Like the butterfly, I have the strength and the hope to believe, in time I will emerge from my cocoon… Transformed.

I have long loved butterflies for what they represent. The thought that a fuzzy caterpillar can turn into a beautiful being with gossamer, multicolored wings and the ability to fly is nothing short of miraculous. If such a wonderful thing can happen to such a lowly insect, then imagine the change that can happen in us.

We can’t always control the changes that happen in us. I know I never asked for nor wanted to have CIDP. But, we can control the way these changes affect our spirit. Our bodies may be weak but no one has to tell our hearts that. Our hearts can soar to the heavens… right along with the butterfly.


Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International


Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

 

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Dec 13 2008

Support Saturday - Patient and Caregiver CIDP Support

It should come as no great surprise that I’m going to discuss in greater detail the forums provided by the GBS-CIDP Foundation International. Anyone who has been affected by Chronic Inflammatory Demyelinating Polyneuropathy needs to visit these forums.

As stated previously in this blog, unlike the majority of the online forums I’ve visited, the ones located at the GBS-CIDP Foundation International are fairly active. You’ll rarely have to wait more than a couple of hours to get a response to a post. It’s amazing how much stress can be relieved just by knowing someone will respond to your question soon, instead of having to wait for days or weeks as I have had to do on other message boards. That almost immediate access to knowledge is especially important if you have a rare disease like CIDP where not a whole lot of information can be found about it online.

The forums at the GBS-CIDP Foundation International is filled with a mix of people who have been living with or caring for someone with CIDP for years and those who are newly diagnosed. Since the disease progresses differently in everyone, you can find people with various levels of disability. That can be extremely helpful if you’re newly disabled or having to encounter a new situation or experience with a disability. Also, no matter what treatment option your neurologist and you settle upon, odds are good someone is either presently on a similar treatment or has been on it in the past. Hearing their experiences with the various treatment options can help you know better what to expect. As we all know, it’s one thing to read about the side effects and another thing entirely to actually hear someone discuss how the side effects affected them.

Just about any kind of support you need can also be found at the forums. Anything from needing cheering up after a bad day to worries about job hunting with a disability have all been addressed by the loving, caring members of the message boards.

Should it ever be needed, the admin of the message board is easily reached. They do an excellent job of staying on top of things.

I am not exaggerating when I say that just having access to the GBS-CIDP Foundation International forums has been a huge blessing to me. I’m sure it will be for you, too!


Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International


Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

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Dec 12 2008

CIDP Research & Treatment in Sweden

Socialstyrelsen in Stockholm, Sweden is presently doing research on CIDP.

From their website:

The Neurology Clinic at Karolinska University Hospital and Linköping University Hospital are conducting research projects on CIDP. Current projects aim to investigate changes in immunological characteristics of white blood cells as well as neuropeptides and nerve growth factors in blood, spinal fluid, and nerve tissue. There is also an on-going physiotherapeutic long-term study of CIDP patients which aims to map the degree of disability over time, and to develop new methodology and scales to measure the effect of CIDP treatment. For more information please contact Dr. Rayomand Press, (see contact details under the heading “Resource personnel”), and Professor Jan Ernerudh at the Departments of Neurology and Immunology at Linköping University Hospital.

For more information, please click here .

There is also a TON of information posted about CIDP at the link. While the medical jargon might be a bit heavy for some, it’s definitely worth a read.


Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International


Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

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Dec 11 2008

Spotlight on: Chronic Inflammatory Demyelinating Polyneuropathy or CIDP

It’s a little late, but I am making the demyelinating disease up for discussion this month CIDP. I just felt that with the new blog schedule I posted yesterday it would be appropriate to name a demyelinating disease to be focused on for this month. Given that there are only a few weeks left in December, Chronic Inflammatory Demyelinating Polyneuropathy was the natural choice. A lot about it has already been discussed on this blog and will be discussed in the future when I share my experiences so only having a few weeks won’t be an issue.

A little bit about CIDP, it’s symptoms, treatment, and other information can be found here .

The charity in the spotlight this month is the GBS-CIDP Foundation International. Information on it can be found here .

With those two topics already covered, that means this post is going to be dedicated to a Blog Review!

The blog being reviewed is: CIDP And Me

What is the blog about?

CIDP And Me provides a snapshot of one woman’s life experiences and how CIDP affects them. She chronicles the various highs and lows of her life with humor and hope, creating an engaging read that everyone can relate to, regardless of whether or not they are living with a demyelinating disease.

How often is it updated?

A few times every month, making it perfect for those who may not have a lot of time to devote to daily blog reading.

Can I subscribe to it?

Yup! There’s a link to subscribe to an e-mail newsletter of the blog posts on the blog. I can’t find a link to subscribe to it via an RSS Reader but I’m pretty sure those a little more blog savvy than me will be able to set it up as some sort of RSS feed.

Overall

Kristen, the blogger behind CIDP And Me, is a wonderfully sweet woman and a talented writer. Normally upbeat and positive, CIDP And Me is a great blog to read for hope and inspiration. Since CIDP progresses differently in everyone, it’s important to read as many personal experiences as possible in order to get some sort of idea of what to expect when living with such a disease. CIDP And Me is definitely a blog everyone should check out!


Demyelinating Disease of the Month - Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. More info can be found here.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International


Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

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Dec 10 2008

A couple of changes to the blog

Published by kithlyara under Introduction Edit This

As my dedicated readers of my blog might have noticed, I’ve changed the background theme. I’ve lost a customized header but gained more room for pages, three columns that actually work the way they’re supposed to, and greater paragraph definition, making it easier to read. RSS and e-mail readers won’t notice the changes, of course.

Earlier today, I had a brainstorm. I was trying to figure out a posting schedule so my blog posts wouldn’t seem so random. I’ve come up with a very tentative schedule. As guest bloggers get assigned or I come across information that I feel needs to be posted right away, the schedule will be adapted to accommodate it. Here is the tentative schedule:

  • Sunday - Inspiring stories of those living with demyelinating diseases or their loved ones.
  • Monday - Living with CIDP: Experiences and thoughts of my personal journey with a demyelinating disease.
  • Tuesday - Information on Western based medical treatments.
  • Wednesday - Information on symptoms
  • Thursday - Information on Alternative based medical treatments
  • Friday - Research
  • Saturday - Information on support groups, both online and off, for patients and caregivers. Reader support will also be given as needed through responding to questions or just giving emotional support. Readers can seek support through leaving comments or e-mailing me.

Another change is I have decided to highlight a different demyelinating disease each month. The first week of the month will be dedicated to getting information out about the highlighted disease. The topics discussed will be:

  • Demyelinating Disease - Done much in the way of my “A little bit about CIDP ” post. It will provide basic information on the disease and provide links to where additional information can be found, if available.
  • Charity Spotlight - A “review” of a charity that focuses on the demyelinating disease being spotlit for the month. This will be handled in the same way as my “Charity Spotlight: GBS-CIDP Foundation International ” post.
  • Blog Review - A review of a blog about the demyelinating disease. The blog will also receive a permanent link in my blogroll.

As often as possible during the month, the weekly inspiring stories, information on treatments, symptoms, research, and support posts will be tailored in accordance with the demyelinating disease being highlighted.

So, now I put it to you, my wonderful readers: What do you think? Is this a good idea? Do you love it or do you hate it? Do you have a better one? Leave me a comment or e-mail to let me know! I’m always open to your feedback.


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Dec 09 2008

Charity Spotlight: GBS-CIDP Foundation International

For various reasons, I feel it’s best to start off my discussion of the many charities out there for demyelinating diseases with the GBS-CIDP Foundation International .

Who are they?

The GBS-CIDP Foundation International is a charity that exists to inform the public, encourage research, and provide support for those living with Guillian-Barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and any of their variants.

Originally founded in 1980 by Robert and Estelle Benson, the GBS-CIDP Foundation International has grown from a grass-roots effort to an international organization with over 23,000 members in 160 chapters on five continents.

What can they do for me?

Anyone that goes to the website and signs up to receive information on their local chapter will receive a packet in the mail that contains A LOT of information. One of the items I received in my packet was a copy of the book “Overview for the Layperson”. This 76 page booklet has answers to just about every single question someone newly diagnosed with Guillian-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy would have. It has been a God-send to me as I search for answers and information to living with CIDP.

Another wonderful asset of the GBS-CIDP Foundation International is their forums. The members are educated, supportive, and very helpful. If you’re ever feeling depressed about anything, you can count on them to rally around you and cheer you up. If you have any fears or worries, they will reassure you as best as they can through information and sharing their experiences with you. The forums are also fairly active so it’s unlikely you’ll be left hanging while waiting for a response for long. Hands down, the forum members are simply the best.

Every year, the GBS-CIDP Foundation International also hosts a symposium where patients, caregivers, and doctors can all get together to share information on the latest treatments, research, and simply make new friends. While I haveyet to personally go, many of the members look forward to attending the symposium every year.

A lot of inspirational and motivational stories can be found on their website, particularly dealing with individuals diagnosed with GBS. Reading through any of the stories posted front and center on their website will give anyone the hope they need for the future.

Overall

The GBS-CIDP Foundation International is really a wonderful organization. The amount of information and support they freely give to those who need it is astounding. Their forum members are simply some of the best, most caring individuals I have ever been blessed enough to meet online. If you or anyone you know is living with Guillian-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy, definitely check them out and donate to the cause !


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