Msunderstood Issue1

Issue 1

This Issue: Welcome to MS. Understood About Jackie pg. 1

Ms. Understood…Misunderstood….or MS Understood. However you read it, it means something different to all of us. Maybe that’s what we can accomplish here. We can take the misunderstandings and learn to understand Multiple Sclerosis. I say we, because this belongs to us. There are no barriers here, no rules and it is open to everyone. We are the sufferers of MS. We can choose to accept it, laugh at it, and learn from it, or …not. As I said this belongs to us. You can contribute it with your opinions, your comments, and your writing. Is there anything you want to read about? Anything you have to say? Bring it on. Do you hate this newsletter and me, and want it to stop? E-mail me and let me know! I’ll always distribute what is sent to me, regardless of how nice, rude, crude, or whatever it is. Send me your stories, your questions, your rants, hell, even your dirty jokes. If this piece of paper can put a smile on your face once a month it will all be worth it.

Ms. Understood

So welcome to issue one.

pg.2

Misunderstood

-Jackie Zimmerman

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MS Understood pg.2

www.msunderstoodnewsletter.blogspot.com

o t s U . r n d e s M

d o

About Jackie

The Depressing Stuff pg. 3

Questionnaire pg.3

It Could Be Worse pg.3

Locating Others pg.4

Contact Info: MSUnderstood.Newsletter @gmail.com

To begin, I hate talking about myself, so we’ll make this short and sweet. I’m 22 and from Michigan. I graduated college in December of 2006 with my degree in Graphic Design. One of my goals for this newsletter is to always be well designed. However, there are no guarantees on that one... I am unemployed at the moment, not because of my MS, but because of the shitty economic state of Michigan, thanks Granholm. I was diagnosed in September of 2006, and my symptoms were numbness of lower extremities. I have since had an optic neuritis twice. I am not going to give you the run down of “my story” because frankly I’m tired of reading other people’s stories. Most are the same beginning with unexpected

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(cont.)

symptoms, bad doctor experiences, possible misdiagnosis, and now a ticket on the MS train. I’ve thought about writing a memoir, but in the books I’ve already read, I’m pretty sure someone else has written the exact same thing, and it’s really hard to write a whole book about yourself. And as you will soon realize, I’m not exactly a talented writer, or editor. So I apologize in advance for all future spelling and grammatical mistakes. Also, for those of you who originally e-mailed me your home addresses, I have decided to E-mail the newsletter given my current state of unemployment...this girl can’t even afford postage. My goal is one newsletter a month, but if unemployment continues it might be more, if I’m bored. I also have never written a newsletter, so if there is some unwritten law that I’m not following, clue me in so I don’t look like a dumbass. Real quick, here’s why I wanted to start this newsletter. When I was diagnosed, I searched all over to find something dedicated to us, the 20-30 year old group. We are the most diagnosed, however somehow we have the LEAST amount of materials marketed to us. The support groups are filled with a lot of older people who aren’t exactly uplifting. I wanted something for me, a way to meet people, a place to talk about things I care about, like college, or new careers, or anything else that's of concern to people my age. So I’m hoping to create something here to provide support, humor, or a “place” of refuge. I can’t do it on my own, so send me your thoughts, and email addresses of your friends with MS and spread the word, MS.Understood has officially landed!

Ms. Understood This section is dedicated to us women and all of our issues. Since we are twice as likely as men to develop MS, we get our own section in my newsletter. So write in with your stories, your questions, all and any of the above.

Misunderstood This section is reserved for problems that we experience with MS. It’s about how we are misunderstood by our loved ones, others around us and the medical community.

MS Understood Here is where we talk about the latest and greatest advances in MS treatment and care. Hopefully some day, there will be a cure here. Until then..we’ll talk about CRABs, and all of those lovely new oral medications that will hopefully be out soon otherwise I’m going to have to start killing people because I’m tired of shooting up.

POLL Every month I’ll post a new poll to my blog,

www.msunderstoodnewsletter.blogspot.com

log on to my blog, vote and I’ll post the results in next months issue.

What were your first symptoms at diagnosis?

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The Depressing Stuff Multiple Sclerosis is the most common progressive and disabling neurological condition in young adults As of 2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years. Every week about 200 people are diagnosed We still don’t know what causes MS. In case you haven’t heard, there is still no cure.

It Could Be Worse I think it’s important to know about other diseases. Until I was diagnosed I had no idea what MS was. So every month we’re going to give the basics about another disease, if there are any you’d like to learn about, email me!

Fibromyalgia What Is Fibromyalgia? Fibromyalgia is a disorder that causes muscle pain and fatigue (feeling tired). People with fibromyalgia have "tender points" on the body. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs. These points hurt when pressure is put on them.

Questionnaire

What Causes Fibromyalgia? The causes of fibromyalgia are unknown.

I know many of you have already completed this, and if you have I still have it, but if you haven’t, please email me with this info so I can get to know you too. Thanks!

Fibromyalgia has been linked to: Stressful or traumatic events, such as car accidents. Repetitive injuries Illness

[email protected]

Certain diseases. Fibromyalgia can also occur on its own. Some scien-

Name:

tists think that a gene or genes might

City,State:

be involved in fibromyalgia. The genes

E-mail address:

could make a person react strongly

Male or Female:

to things that other people would not find painful.

Age:

Who Is Affected by Fibromyalgia?

Age at diagnosis:

Fibromyalgia affects as many as 1 in

First symptoms:

50 Americans. Most people with fibromyalgia are women. Most people are

Current Condition ("normal life", some disability, total disability) What type of MS do you have? Are you interested in helping with the newsletter? If yes, what would you like to do/ what can you offer? Is there anything that you really want included in the newsletter/ any ideas for the newsletter? Any thing you are dying to say??

diagnosed during middle age. How Is Fibromyalgia Treated? Many family physicians, general internists, or rheumatologists can treat fibromyalgia. Fibromyalgia treatment often requires a team approach. The team may include your doctor, a physical therapist, and possibly other health care providers. The U.S. Food and Drug Administration (FDA) has not yet approved any medicines to treat fibromyalgia.

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Locating Others

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JACKIE!

Who is tired of hearing “My mom’s second cousin’s brother-in-laws wife has MS”? Who is tired of that super distant friend or relative being the only person out there you know who has MS? I Live in Michigan, and I KNOW that there are other 20-30 year olds out there who are in the same or similar boat that I am. The question is, where the hell are they? By law, your doctor or the person who supplies your meds cannot tell you anyone’s contact information, so finding those people can a little difficult. So I’m proposing a trust system. I’m looking for other people with MS, so I’m assuming you are too, we just need a common ground to meet each other. Maybe MS.Understood can help. Send me your email address and your location, and I’ll publish them in the monthly magazine. Yes, it’s a little scary publishing your email address to the world, but it could prove to be beneficial if you meet some cool people. You could always create a spare hotmail/yahoo/gmail account that isn’t your primary for this reason. We have a lot to learn from each other, so lets get started. Send me your name, age, location and email. Disclaimer: No I’m not going to sell your email addresses. Yes, they will be published monthly. I am not responsible for who contacts you or anything that is said thereafter. I am merely responsible for bringing people in close areas together. Please don't sue me, I’m unemployed, remember.

MSUnderstood.Newsletter @gmail.com

www.msunderstoodnewsletter.blogspot.com