Demyelinated not Destroyed

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:

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.

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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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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!

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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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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.

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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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.