My journey with MS

Keep up the fundraising...

2009-10-14T17:50:00.003-05:00

The MS Walk in Kemah is less than a month away and we're still $3,230.00 short of meeting our $6,000.00 goal! Let's really work hard these last couple of weeks to raise more funds!! Please e-mail or call me if you need suggestions or ideas on how to raise more money.

We can do it!! Let's go Angels!

2 Months & 2 Weeks

2009-08-22T16:28:00.003-05:00

The 2009 MS Walk at the Kemah Boardwalk is just around the corner! You know what that means....time to start the fund raising and registering!! I sent out a mass e-mail today to all of you who have either walked, donated, or done both in the past. We've got a lot of fun to make up for this year, since we didn't get to walk last year! And good news....the walk is in November this year, so hopefully we won't be dripping in sweat like the 2007 walk in September! Woohoo!!

Here's the link to my home page:
http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?px=3658802&pg=personal&fr_id=11721

And here is a link to the team page:
http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?team_id=158255&pg=team&fr_id=11721

Notice there are only 9 Angel's so far!! Let's get to work!! Send the links to everyone you think may want to participate!

Thank you in advance for your hard work, generosity, and support!!

The Spoon Theory

2009-07-10T14:26:00.003-05:00

So, I just read this awesome story that brought me to tears and really hit home. My mom found it online and sent it to me. It is a little long, but I would really love for all of you to read it. It's called "The Spoon Theory." Basically, it's a great way to explain what myself, others with MS, and others with any disease or illness they live with go through on a daily basis. Luckily my daily struggles aren't quite as extreme as the author of this story. But, I do have daily struggles that most people don't realize because you can't physically see them. And I do have to "count my spoons" every day, especially during the heat of the summer. Here's the link and hopefully all of this will make more sense:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Let me know what you think!

This is going to be really long........

2009-06-25T18:45:00.003-05:00

Wow, it's been super long since I last posted. I'm the worst blogger EVER!! Well, to update all of you.....I've been feeling well for the most part. I have some twinges and tingles here and there, but I've been able to pinpoint exactly what causes them....Not getting enough rest or getting too hot. So, the solution is pretty easy....get rest and NEVER go outside! Not really, I go outside, but I've got to be really careful and make sure I go inside to cool off often or stay in the pool or lake.

I know a lot of you have been asking about the MS Walk in Kemah. I asked you all to join my team several months ago during MS awareness week. I'll be getting back to all of you with details as it gets a little closer. It's not until November, so maybe like late August I'll start bugging you!!

I've been staying really busy with work. I'm working as an exercise physiologist in cardiac rehab at an amazing facility here in Longview. I'm loving it!! It's the most rewarding job I've had yet! I get to work with patients right after they've had a heart event, like a heart attack, open heart surgery, stents placed, etc. To see these patients come in discouraged, depressed, scared, and sometimes clueless as to what a heart healthy diet is or even exercise.....and by the end of their 12 weeks with us, they're totally changed! It's really amazing to watch:)

I did have a very difficult situation though at work, one that I hadn't had to encounter yet. I was doing my in-patient training in the hospital, which was about a month after I started the job. This consists of getting patients out of bed who just had open heart surgery to get them up and walking. Well, during my first week of training there were a lot of patients who needed A LOT of assistance. I don't know if you guys remember how my first bout of MS started, but it was caused by lifting a heavy book case. Then the next exacerbation was from lifting laundry detergent. So naturally, I get pretty nervous when I have to lift anything heavy.....especially a person!! I came home from work every day that week super anxious, nervous, and crying. I didn't want to have to tell my brand new supervisor that she hired a "dud." I was torn on whether to tell her or not. Doug and I decided my health was way more important than my job. So, I sat down with my supervisor and told her about my MS. I cried the entire time like a big baby!! I was surprised I cried because I'm not saddened by my MS. I guess it was just a situation I hadn't had to deal with yet and I was scared. I had no idea what my supervisor was going to think or say. I mean, my last employer knew me before I was diagnosed with MS. And he went through the whole thing with me and was SUPER supportive of me, along with all of my previous co-workers. I never really had to tell anyone at work the whole story because they all went through it with me. I was worried that my new supervisor and new co-workers would think of me as the new girl with MS or think that I'm not capable of fulfilling my job duties or think that I'm weak. Anyway, I sat down with my new supervisor and she was so supportive and understanding. She agreed that my health was #1! We found some ways to modify my in-patient duties and I'm pretty sure she doesn't think I'm a "dud." :) I also told my co-workers and they were all really nice about it. It's tough though because most people have heard about MS, but they really don't know what it is. But, maybe that's why I have it.....maybe I'm supposed to educate people and raise the awareness. Which in turn will hopefully lead us to a cure!!!

Anyway, on to other things....Longview is good. It's growing on me more and more each day. I still miss my family and friends like CRAZY, but we'll be near them again soon! Not soon enough:), but soon! We've made some great friends here. We've found the little restaurants and shops we like to go to, so it's kind of starting to feel like home. Apparently I've picked up a bit of an accent though! No one notices it here obviously, but everytime I go home to visit I get ragged on:)

We have a trip planned very soon that we cannot wait for!! We're going to Napa Valley in mid-July to celebrate our 5 year wedding anniversary!! Can ya'll believe it's been 5 years??!!

I think I've blabbed on enough now. I had so much to update you on though. I promise it won't be as long next time. I forgot how good it feels to blog!! Thanks to all of you who have asked about me and my blog. It's nice to know you guys are checking in on me:)

Stay cool in this Africa heat!!!

Day 6 of MS Awareness Week

2009-03-07T14:33:00.002-06:00

Okay, your final task for MS Awareness Week is......DONATE!!!

Join the movement and donate now to create a world free of MS. Whether you want to make a one-time or recurring gift, a planned gift, fundraise at our events or give at your workplace, you’ll know your contribution is helping to fund cutting-edge research, drive change through advocacy, facilitate professional education, and provide programs and services to help people with MS and their families move their lives forward.

There are several options when donating. Check out the link below:

http://www.nationalmssociety.org/donate/index.aspx

You can also go to my MS Walk page and donate to Nicole's Angels.

Thank you so much for your generosity and support!

Day 4.....sorry I skipped day 3.....of MS Awarness Week

2009-03-05T18:09:00.004-06:00

So sorry I slacked off yesterday, it was a crazy day. I started my new job yesterday.....and I love it!!! I'm working in cardiac rehab as an exercise physiologist. The girls I work with are AWESOME and so is the facility I'm working in. It's brand new, half a mile from my home, it has cardiac rehab, physical therapy, a full fitness center with several pools, great fitness classes, and a full service spa!! I'm so blessed and thankful for this opportunity.

Okay, back to business!! The task for Day 4 of MS Awareness week is to Walk MS. You can do that by joining my team, Nicole's Angels. This will be our 3rd year! We unfortunately didn't get to walk last year due to Hurricane Ike, but we still raised a lot of money. To join my team or donate, check out my website:

http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents/2032375347?pg=team&fr_id=11721&team_id=158255

We're going to do the Kemah walk again. Thank goodness they chose a cooler time of year for 2009, Saturday, November 7th. YAY!!!! Still in hurricane season, but hopefully this year we'll luck out. If you can't walk that day, please make a donation to the team.

If you're not a walker and would prefer to Bike MS , check out the following website:
http://www.nationalmssociety.org/get-involved/events/bike-ms/index.aspx
It's a totally different event, but all for the same cause!

I really encourage you to walk with us though at the Kemah Boardwalk in November. We had a blast in 2007! Please let me know if you have any questions regarding the walk, signing up, or donating. And please pass my walk website on to everyone you know to have them sign up or donate. Our goal this year is $6,000, so I need your help!!

Thank you in advance for your support!

Day 2 of MS Awareness Week: VOLUNTEER

2009-03-03T17:06:00.003-06:00

I hope everyone sent their e-mails to Congress yesterday!! Thank you to everyone who did! Today's task is..............VOLUNTEER

Check out this link to find ways to volunteer:
http://www.nationalmssociety.org/get-involved/volunteer/index.aspx

Last year I volunteered in LaGrange at the MS 150 it was such a rewarding experience! Check out my posting from April of last year to read about it and see pics. I would highly recommend volunteering at the MS 150 this year. There are a million ways to help! And you don't have to drive all the way to LaGrange, you can help in Houston when the bikers leave and/or return. As of yesterday, they still need 3,000 volunteers!!! Here's a link to sign up to volunteer at the MS 150, just click on "Sign Up as a Volunteer":
http://biketxh.nationalmssociety.org/site/TR/Bike/TXHBikeEvents?pg=entry&fr_id=10222

Unfortunately I won't be able to help at the MS 150 this year. Since I live so far from everything now except for Louisiana, Doug and I can't make the haul. We will be traveling the weekend before and after, so we have to stay in town that weekend. I'm super bummed because we had so much fun last year. I would highly recommend it!! Let me know if you have any questions on the volunteer process.

There are other ways to volunteer though if you're busy the weekend of the MS 150. Just click the first link I gave you and choose!!

Please send me comments or e-mails this week letting me know what you're doing to advocate, volunteer, and raise MS awareness. I've already received a few e-mails! Keem them coming!!!

Stand by for tomorrow's task.....

MS Awareness week is here......

2009-03-02T18:01:00.004-06:00

Hi everyone! Can you believe it's already MS Awareness Week again??!! This year I couldn't find a calendar of things to do each day of the week. The reason is, this year's motto is "Make Your Mark 365." We want you to make your MS mark all year round, not just this week. But, here are some ideas to get you started this week and hopefully you'll carry on throughout the whole year!

Here's the first way.......

ADVOCATE
–verb (used with object)

1.	to speak or write in favor of; support or urge by argument; recommend publicly

–noun

2.	a person who speaks or writes in support or defense of a person, cause, etc. (usually fol. by of): an advocate of peace.

3.	a person who pleads for or in behalf of another; intercessor.

4.	a person who pleads the cause of another in a court of law.

Any day now Congress will start making decisions about crucial funding for MS research. This legislation would invest $15 million to support MS researchers whose discoveries could hold the key to new treatments or a cure. Click on the following link or copy and paste it into your browser to contact your members of Congress today!

https://secure3.convio.net/nmss/site/Advocacy?cmd=display&page=UserAction&id=585

Here's another link to find other ways to advocate:

http://www.nationalmssociety.org/chapters/TXH/take-action/index.aspx

Please show your support!!! I'll be posting tomorrow to give you your next task!! Thank you for raising the awareness!!

Heads up.....

2009-02-26T18:15:00.001-06:00

Just a heads up.......Next week is MS Awareness Week!! So get ready to participate!!!

Worst Blogger Ever......

2009-02-04T21:13:00.003-06:00

So, it's been FOREVER since I've posted on my blog. I feel TERRIBLE about that. I picked up and moved to East Texas and you haven't heard from me since!!! I have no excuse other than I've been lazy when it comes to blogging and e-mailing.

We had a wonderful Thanksgiving in Dickinson, Christmas in Allen, and New Year's in Austin. Time has flown by that's for sure! I've already been living in ET for almost 3 months. For those of you who don't know by now, we are living in DEEP East Texas.....Longview to be exact. Longview is 2 hours east of Dallas and an hour and a half from Shreveport, LA. Going back to my cajun roots:)

ET has been a lot better than I had anticipated....or should I say dreaded. It's really beautiful here with the TALL pine trees and rolling hills. And it's been so nice to have a COLD winter.....it gets really cold up here! It is so dry here though, I NEVER thought I'd say I miss the humidity! We love our new apartment, it's super nice and so cozy. We have a great view of the pine trees. Our guest room is finally finished and is officially open for visitors! :) We'd love to show you around Longview and maybe party in Shreveport! We've met some really nice friends here and are so thankful for them.

Doug is loving his job! He's finally settled in to his new title.....Attorney at Law. He has a really nice, HUGE office. He's been meeting with and signing new clients, filing petitions, and is in charge of 12 or so cases.....all on his own! And he succeeded at his very first hearing!! He's kicking you know what and taking names:) I'm so proud of him!

As for me.....no luck on the job search. I have been working a temp job for the past couple of weeks in the HR department at the hospital in Marshall, which is about 30 minutes east of Longview. I am so thankful for the work! I really like the girls I'm working with and would love to stay there permanently, but they don't have any openings right now. I'm just helping them catch up on stuff while I look for a job. Please keep me in your prayers.

As far as my health.....I've been feeling GREAT! I would even say the best I've felt since my diagnosis! I'm pretty sure the cold weather is helping, as well as NO STRESS!!!! Hopefully Doug and I will be adding to our family in the near future, so I've got to keep up the good health! I'm headed to Houston Friday to see my retina specialist for my 3 month check up. My eyes are STILL giving me problems and I'm STILL on eye drops, but the plus side is they haven't gotten any worse.

I think this is enough of an update for now. I promise I will be better about blogging. I will update you all very soon. I miss my family and friends so very much, but ET isn't forever.....I will be back! Lots of love......

Here's the quote for today. A friend of mine sent me an e-mail that said this:

"When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!"

I want you guys to really think about this. I feel like this really relates to how I was feeling several months ago when Doug got this job offer and we went round and round about whether Longview was the right decision. Now I feel like God definitely is teaching me how to fly:)

It's been exactly one month from today since Ike....

2008-10-13T13:55:00.003-05:00

I just realized I haven't blogged since Ike! FINALLY everything is back to normal for the most part since the storm. I hope all of you made it through Hurricane Ike safely and are returning back to your normal lives by now.

I think most of you know by now that the MS Walk in Kemah was cancelled. It was originally scheduled for Saturday, September 20th at the Kemah Boardwalk. But, no thanks to Ike, Kemah was destroyed:( I was really sad that we didn't get to walk this year, but I was even more sad for the families that lost so much, if not everything, during Ike. The NMSS is rescheduling both the Downtown walk and The Woodlands walk, but the Kemah one isn't going to happen this year. We'll have to wait until next year. However, we still made it in the top three for fundraising, rounding out at $5,705.00!!! Wooohoooo!!! Thanks again for all of your generosity and support!!

As for my MS.....my symptoms are under control for now. I have a few pains and twinges of tingling here and there, but I've been doing well for the most part. I know I announced in my last blog that Doug and I are moving, so many of you have been wondering what I'll do for doctor's, etc. I am going to keep all of my AMAZING doctors here in Houston. They cannot be replaced!!! Plus, Doug and I will be living back in Houston in a few years:) I'll just commute to Houston for the next few years when I need to see them. The only new doctor I'll have to find in the Longview area will be a high risk pregnancy doctor for sometime in the future:)

I'll post again soon to keep you up to date on the big move!! Doug already moved almost two weeks ago and I'll be joining him in 5 weeks!!

I'd like to share something with you that has really got me through the last month.....

To get something you never had,

you have to do something you never did.

When God takes something from your grasp,

He's not punishing you,

but merely opening your hands to receive something better.

Conentrate on this sentence.....

The will of God will never take you

where the Grace of God will not protect you.

Back to the odd numbers again....

2008-09-04T10:39:00.003-05:00

So, I had another birthday last week. And I'm an odd number now:( So far though, it hasn't been too bad. I had a wonderful celebration....actually 3:).....with family and friends and wine!

Update on Nicole's Angels....we've exceeded our goal!!! Wooohooo!! So far we've raised $5,245.00!! The walk is in 2 weeks and it's still not too late to sign up if you want to walk with us or make a donation.

Update on my health....the heat and stress have effected me a little this summer, but overall I'm doing fine. I've had weird tingling and numbness in all different areas....my toes, feet, legs, arms, and even face, but none of it lasts very long. And I've experienced some fatigue. I've been better about resting and not overdoing it, but there is still room for improvement! I can't wait for some cooler weather though. Doug and I just got back from a 5 day vacation in Vail, Colorado. Talk about cooler weather!! It was in the 70's during the day and 50's at night. Sooooooo nice!!

Big news....Doug and I are moving to Longview, Tx!!! He got a job offer as an associate at a law firm in Longview. It's with an attorney that does work with the firm Doug works for now. It should only be for 2-3 years and then we'll be back in Houston. We're super excited:) Doug starts October 1st. Our current lease isn't up until November 15th, so that's when I'll be joining Doug in Longview. I'll keep you posted on the move!!

I think that's about all the updates I have for now. Please say a prayer that my odd numbered year goes well:)

"And in the end, it's not the years in your life that count. It's the life in your years." ~Abraham Lincoln

Nicole's AWESOME Angels

2008-08-08T11:04:00.003-05:00

I have the most awesome Walk MS Team ever!! We've been really working hard to be the first team to reach the $3,000 mark....and WE DID!!! We won the prize: having our own team tent set up at the walk, our own special starting spot for the walk, 25 t-shirts, and the bragging rights!! Wooohooo!! Thanks to all of my angels for working so hard:)

We only have $1,610 to go to meet our $5,000 goal!!

"Go for the moon. If you don't get it, you'll still be heading for a star."
-Willis Reed

Join the Movement to End MS

2008-07-18T09:16:00.004-05:00

We've got 2 months and 2 days to raise as much money as possible for the MS Walk in Kemah!! Last year we were the largest team at Kemah, let's do it again this year!! Last year we were the 3rd top fundraising team at Kemah, let's be number 1 this year!!! It's for such a great cause that is so dear to my heart because me and 399,000 people in America live with MS every day.

Here's the link to my personal page:
http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?px=3658802&pg=personal&fr_id=9339&s_tafId=76299

Here's the link to my team page:
http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?team_id=115978&pg=team&fr_id=9339&s_tafId=76299

I'm asking all of you to make some sort of donation, the bigger the better, but keep in mind, no donation is too small. I'm also inviting all of you to walk with us on September 20th at the Kemah Boardwalk as we push the movement to make the world free of MS! If you can't walk with us, you can still make a donation. Please send me an e-mail if you have any questions: nicreagan_2003@yahoo.com And remember, when you make a donation, make sure it's through Nicole's Angels so our team gets credit for it!!

Thanks in advance for your support and generosity!!

"Be the change you want to see in the world." ~Mahatma Gandhi

The heat is on....

2008-06-10T11:47:00.004-05:00

So, it's been a while. Sorry, but things are just now slowing down from Doug taking his last finals and FINALLY graduating from South Texas College of Law. Woooohooooo!! Here's my favorite picture from the big day:

I can't tell you how incredibly proud of him I am:) He's now studying for the bar exam....uggghhh! Just when he though he was done!! He takes it the last 3 days of July, please keep him in your prayers.

As for me, I've been feeling pretty good. As you all know, the Texas summer heat really gets MS symptoms going, but so far so good. I've been eating better, exercising....not as much as I should be though, and trying to stay cool and rested. I've been having some aches and pains in my legs, but at least I can feel them:)

I had a good check up with my retina specialist a few weeks ago. My left eye is doing a lot better, no inflammation or floaters. So, I'm doing a very low dose of steroid drops only twice a day in the left eye and still the non-steroidal anti-inflammatory drops 4 times a day in both eyes. As for the right eye, it's being more stubborn....still doing the stronger steroid drop 4 times a day in that eye. Still aftermath from me being a stubborn patient and getting off my drops in the right eye several months ago. Anyway, my doctor still has high hopes she can get me off at least the steroid drop sometime soon. I'm sure I'll be on the NSAID's a while, but that's fine because I see clearer with them.

Overall though, I'm feeling great! Hope everyone is having a good summer so far. Stay cool!!

"Love is to the heart what the summer is to the farmer’s year - it brings to harvest all the loveliest flowers of the soul."

Paintings for MS

2008-04-28T14:59:00.006-05:00

I just had to share something really awesome with all of you. A friend of mine was diagnosed with MS a couple of months ago and like most people newly diagnosed with MS, she's had a tough time finding how to release some of her stress and frustration.

She came up with the most brilliant idea EVER!! She went to Hobby Lobby and bought supplies to paint. She hasn't stopped painting since:) Her paintings are so neat, people are wanting to buy them. She wasn't willing to take money for them, but told her "buyers" they could have the paintings in exchange for a donation to the National MS Society through Nicole's Angels!!! She's already raised well over $100 for Nicole's Angels and is still painting to raise more money. Who would have thought that her new hobby would raise money for our cause??!! Nicole's Angels is definitely going to be the biggest fundraising team for the Kemah MS Walk! I'm so excited!!

I want to share a few pics of her paintings, they're awesome!! I'd definitely hang them in my house:)

Lots and lots of thanks go out to this very special artist! You ROCK!! Keep it up!!

Happy 1 Year Anniversary to Me!!

2008-04-24T20:25:00.004-05:00

Well, I've reached a milestone. It has been one year (and a few days) since I started my injections. Can you believe that it's already been a year?? Even with all of the pain, lumps, and anxiety from the injections, the time still flew by. It's just another one of my daily routines now. Don't get me wrong though, sometimes they still hurt like hell, but they've gotten so much better than this time last year. Maybe the pics will bring the reality of what one year of daily injections look like.....just think, there are over 365 injections laying there! Crazy, huh?

This post is especially for those of you just starting out on your MS treatment, aaaahhhemmm.....Melissa and Kristin. It may seem like a really long road right now and the injections may seem TERRIBLE and cause you GREAT anxiety, but you will get through it. There is light at the end of the tunnel. I know we'll be on the injections indefinitely, but since reaching my 1 year milestone I feel like it's a walk in the park....well, maybe that's exaggerating a little, but things do get better.....I promise:) You guys can do it!!

It is such a liberating feeling to be where I am today and look back at Nicole one year ago. And I feel so proud for sticking to the treatment....no pun intended:)

Oh ya, and I'd like to thank Doug for letting me scream as loud as I want, curse, and even cry sometimes when they really, really hurt....you've been an awesome nurse! Or is a male nurse called a murse??

I know I thank you all a lot for being so supportive, but thanks again. I wouldn't be where I am today without each of you.

One of the most touching experiences of my life...

2008-04-16T20:27:00.023-05:00

Last weekend was the 2008 BP MS 150, which as most of you know is a bike ride from Houston to Austin. The riders leave at the crack of dawn on Saturday morning and head to LaGrange. Once in LaGrange they eat, relax, and get some rest. Early Sunday morning the riders get up and make the last leg of their ride to Austin. They do all of this to show support and raise money for people with Multiple Sclerosis. To date this single event just for this year has raised $10,263,265.96 and is still going. The deadline for donations isn't until May 13!!!

This year I really wanted to show my appreciation to the riders and volunteer at the event. My Mom and step-dad, Steve, both work for Continental Airlines, which is one of the big corporate sponsors for the event. So, Mom, Doug, and I got up EARY Saturday morning and headed to LaGrange to meet Steve, who was already there helping set up the night before. As we headed down Dairy Ashford towards I-10 we saw the riders making their way to the starting point. We looked down Memorial Drive and for as far as we could see were hundreds of bikes and the sun hadn't even risen yet. This sight literally brought tears to my eyes. To know that so many people were riding for me and the other 400,000 people in the U.S. with MS. It made my heart swell:)

Once we got to LaGrange it was ALL work getting things ready for the riders to arrive. We helped the Continental booth set up and get all of the food ready.....and taste the beer:)

Apparently the head wind was so bad, the riders started showing up 2 hours later than they normally do. They were riding their hearts out! You could tell they were exhausted once they finally got to LaGrange. We cheered as loud as we could for every single Continental rider as they rode in. For lunch we served hot dogs and for dinner it was spaghetti and meatballs (so they could get their carbs) and the best darn jambalaya made by the nicest coonasses:) Some of the riders didn't even make it in time for lunch, they barely even made it for dinner. But, they made it!!! I was able to personally thank the riders as I helped serve them meals.

I met some of the neatest people Saturday. One of them was JoAnn, AKA "Rollin' Jo." She was experiencing symptoms of MS for 10 years, but they never actually diagnosed her.....until it was a little too late. She now has been officially diagnosed, but is in a wheel chair. She has a lot of complications due to her not being able to walk, but you would never know it. She's a HOOT! JoAnn is one of the funniest, most upbeat people you'll meet. The DJ started playing "Twist" and she was out there twisting around in her wheel chair!!! She's a professional clown now and visits the children at M.D. Anderson. Her clown name is "Rollin' Jo!" She said if you're ever throwing a pity party for yourself, go to the children's wing at M.D. Anderson, see a child with cancer, and you'll realize how blessed you are. She had an amazing spirit and I'll never forget her!!

They even had a team named after me!!! NRG!!!! :)

The whole day was one of the most touching experiences of my life. I hope to make it to every BP MS 150 from here on out. It's the least I can do for all of the wonderful people who are trying to do their part to make my life with MS better.

To everyone who participated in this amazing event, I want to thank you from the bottom of my heart. It was an awesome experience!!

Summing Up MS Awareness Week

2008-03-18T13:18:00.005-05:00

Sorry it took me a couple of days to get on here and thank you all for your support and participation last week for MS Awareness Week. I am so touched from all of the things you guys did to join the movement. Here are some of the highlights of what you did last week:

Joined "Nicole's Angels" MS Walk Team....
Cecile Ashby, Melissa Gattis, Liz Ginn, Natalie Hodge, Kiley Muthig, RoseAnn Rapp, Mark Reagan, Melissa Reagan, Rene' Reagan, Renee Reagan (Courtney, I know you said you signed up, but you're still not on the roster, you should probably check on that)

And some of you have already made donations and/or raised donations....
RoseAnn Rapp, Renee Reagan, Kathy Alexander, Karen Brown Hutcheson, Brenda Mitchiner

Karen Brown Hutcheson lives all the way in Chicago, IL and found out what she could do to raise the awareness in her area. She's going to do the Bike MS: Tour de Farms Ride 2008 for the National MS Society's Greater Illinois Chapter. THANKS KAREN!!

I know I didn't name everyone because most of you participated ALL week by doing the daily tasks: signing up to join the movement, writing letters to Congress, signing up for a walk or bike event, donating to the NMSS, and most of all spreading the word. And I can't thank you enough!

I really wasn't sure what kind of response I would get after e-mailing you EVERY day for one whole week. I thought I would probably drive you nuts, but most everyone responded WONDERFULLY! I've never felt so supported:)

I got so wrapped up in all of the activities for MS Awareness Week I didn't even realize Sunday, March 16th was the 1 year anniversary since I was officially diagnosed with Multiple Sclerosis. Can ya'll believe that???!!!

"I would thank you from the bottom of my heart, but for you my heart has no bottom."

Day 7: Suport the Society

2008-03-16T10:41:00.004-05:00

It's the last day of MS Awareness Week!! And you know we were going to ask you for money at some point:) Well, that's today's task...Support the Society: Every donation moves us closer to a world free of MS. I made my donation to the National MS Society!!!

There's a couple of things you can do as far as donating:

Option 1: Go to this website and either write a check and mail it to the address given or you can just donate online: http://www.nationalmssociety.org/donate/index.aspx

Option 2: Go to my homepage for the MS Walk in September and donate through me and my team, Nicole's Angels:
http://main.nationalmssociety.org/goto/Nicole.Grubbs08

Option 3: A good friend of mine from college is riding in the Dallas Sam's Club MS150 and he's dedicated the ride to me. His team name is Team Auwesome and they're even going to wear patches with my name on them!!! He's super sweet and is trying to raise money for the NMSS, check out his site and donate through him:
http://www.ms150.org/dallas/donate/donate.cfm?id=217410

It doesn't matter how you go about it, just please make some sort of a donation to the NMSS. Even if it's just $20, that $20 can help bring us closer to a cure!! I thank you in advance for your generosity and support!

This is your last task!! I will try to post tomorrow with all of the wonderful things you guys did throughout the week. I thank you all for everything and for all of your support:)

Day 6: Make your Mark

2008-03-15T10:37:00.002-05:00

Just finished my task for Day 6, Make your mark: Make your mark against MS and share it with the world, or tell your story on Face of MS. I told my story on the Face of MS. Here's the website:

http://www.faceofms.org/

It's really easy, you just go to the website, enter some information about yourself, and tell your story of how MS has effected your life. You don't have to have MS in order for it to effect your life. You can tell a story about someone you know that has MS....like me:) or maybe someone else you know.

It takes about a week for them to get your story up and running online, so you won't see mine or your's yet, but I'll be looking for everyone's next week!!!

Day 5: Find Opportunities to Volunteer

2008-03-14T09:23:00.003-05:00

TGIF!! Today's task is really important.....Find Opportunities to Volunteer.

I've already signed up for mine! I'm traveling to La Grange, TX on Saturday, April 12th to help Continental Airlines serve lunch and dinner to the riders in the BP MS150 during their pit stops. Doug and I are trying to find somewhere to stay the night so we can also serve breakfast Sunday morning before the riders start their last leg of the ride. The BP MS150 is a HUGE event, so I'm sure they need a lot more volunteers to help things run smoothly. And you don't necessarily have to go to La Grange....it starts in Houston Saturday morning, the riders stay the night in La Grange, and finish in Austin on Sunday. So, you have 3 different locations to choose from to volunteer. But, you don't have to volunteer at the BP MS150 there are plenty of other opportunities throughout the year!

Here's a link to the National MS Society's website to check out other opportunities to volunteer. Here's the Lone Star Chapter which is based out of Houston:
http://txh.nationalmssociety.org/site/PageServer?pagename=TXH_vol_homepage

Here's the link to the NMSS main page in case you're not in the Houston area you can check out where your local chapter is located and what volunteer opportunities are available near you:
http://www.nationalmssociety.org/find-a-chapter/index.aspx

Let me know what you guys plan to do. If you find something you want to do to volunteer and have no one join you, let me know and I'll be there!!

Hope everyone has a great weekend! Expect 2 more posts from me with Saturday and Sunday's tasks, it's the last two!!

"There aren't enough days in the weekend." ....isn't that the truth!!! :)

Appointment with Dr. Rivera

2008-03-13T10:58:00.003-05:00

I saw Dr. Rivera, my MS doctor, yesterday. He wanted to discuss my eyes and my vibrating tailbone.

He said the vibrations in my tailbone could have been a small relapse. But, because it went away on it's own, he wants to treat it conservatively for now and leave it be. If it starts up again I'm supposed to call him and he may want to do another MRI to see if any new lesions have formed.

As for my eyes, he is going to discuss my case with Dr. Tang, the neuro-opthamologist who referred me to my current retina specialist that has me on the drops. He's going to let Dr. Tang know what's going on with me and see what her thoughts are on being on the drops for so long. Depending on what Dr. Tang says, I may need to see her again or she may want to refer me to another retina specialist to get a second opinion or we may just leave it be and keep on doing what we're doing now. Dr. Rivera did say though that it's pretty common for MS patients with uveitis to be on some sort of eye treatment, usually drops, indefinitely. So, I'll let you all know once Dr. Rivera gets back to me regarding his talk with Dr. Tang.

All in all though it was a pretty good appointment. I don't have to see him again for another year, so next March, unless something happens between now and then.

Day 4: Spread the Word

2008-03-13T09:57:00.008-05:00

We're half way through MS Awareness Week, only three more days after today!! Today's task is the easiest of all....Spread the Word. All you have to do is e-mail your friends and family to let them know it's MS Awareness Week. In fact, I've sent out an e-mail to most of you already to forward on to everyone you know!! Every voice matters!!

I know it's not easy to understand what someone with MS may feel like. Since today's task is to spread the word, I want you guys to check out an awesome video that will help you get in the "shoes" of someone with MS and maybe understand what MS patients go through at times or even on a daily basis for some. It's kind of corny at first, but watch the whole thing, the best part is the second half. Just turn your sound up and click the play symbol in the center of the video screen.

http://www.youtube.com/watch?v=6oraM8IF2Gc

To check out more videos from the "Moving Forward Film Festival" click on the link below (there are 4 others that are ALL really good):
http://www.nationalmssociety.org/online-community/film-festival/index.aspx

One of the biggest difficulties in dealing with MS is trying to explain to your friends and family how you feel. There's really no way for them to understand completely, but hopefully the videos can help a little. Let me know what you guys thought of them!

Once again, I've made it super easy for you guys to complete the task for the day:) And thanks again for all of your participation. I have a good feeling Nicole's Angels will be even BIGGER this year!!

Until tomorrow.....

"Spread the Word."

Day 3: Sign Up for a local Walk MS or Bike MS Event

2008-03-12T09:42:00.006-05:00

It's Day 3 of MS Awareness Week and you guys are doing AWESOME so far!! I'm so excited with all of the e-mails I've recieved letting me know what you guys are doing to participate this week. Quite a few of you e-mailed Congress yesterday to encourage the increase of funds for MS research, you guys ROCK!!

Today's task is SUPER easy!! Sign up for a local Walk MS or Bike MS Event. "Nicole's Angels" are back!!!! I've already set up the page for the MS Walk in Kemah, it's not until September 20th, but it's never too early to sign up. It's free to register for the walk, but you can make your donation now if you want to or you can wait....either way you know I'll get it out of you :) But definitely sign up today to walk!! We had an awesome turnout last year, in fact we had the largest team there! And we raised a whopping $4,529.00!! So, this year I raised the goal to $5000.00, I'll probably increase it though because I know we can do it!! Feel free to start your fundraising now!! If you're not sure whether or not you want to walk with us, check out the pics on my blog I posted on September 10, 2007 to see how much fun we had last year!!

Here's the link to my MS Walk page so you can sign up, feel free to invite your friends and family to walk too....the more the merrier!!

http://main.nationalmssociety.org/goto/Nicole.Grubbs08

If you don't want to walk, then find a BIKE MS Event to ride in. Here's a link to all of the upcoming walk and bike events: http://txh.nationalmssociety.org/site/PageServer?pagename=TXH_events_homepage

I can't wait to check back at the end of the day to see how many teammates have already joined me!! Thanks for your support:)

"Walking gets the feet moving, the blood moving, the mind moving. And movement is life. " ~Carrie Latet

Day 2: Contact your members of Congress about important MS research

2008-03-11T09:23:00.002-05:00

I just finished my action to join the movement for Day 2 of MS Awareness Week and it feels great!! I sent an e-mail to Representative Al Green (D-TX 9th) asking him for his support to increase the funds for MS research. You too can write a letter.....it only takes a minute....seriously!! The link is below:

http://capwiz.com/nmss/issues/alert/?alertid=11058171

The letter is already typed up for you. You just enter your name and location, etc. and it sends it for you!! You can add your own story or words if you want to or you can just send the generic letter that's already typed up for you.

Please do todays task, it takes no time and should make a huge impact if everyone participates. We've got to keep the funds going for MS research so we can find a cure. Do you want me to have to complain about my injections forever??? :)

Thanks everyone for your support and participation. I've already got several e-mails from friends and family letting me know what they're going to do to join the movement this week. I'll be posting a list at the end of the week to share with you what everyone is doing to help.

Have a terrific Tuesday!!

"Research is creating new knowledge." ~Neil Armstrong

MS Awareness Week - March 10th-17th, 2008

2008-03-10T13:22:00.003-05:00

Okay, it's here.....MS Awareness Week starts today and goes through next Monday, March 17th! It's time to make yourself and others aware!! Here's a link to the "Seven Days of Action" page to find out how you can do your part all week. It gives you one small task to do each day to make a HUGE difference and move us one step closer to a world free of MS.

http://main.nationalmssociety.org/site/PageServer?pagename=MS_Awareness&autologin=true

I'm going to do my part each day, please do yours....it won't take much time at all and it's for a great cause! Even if you can only do one of the tasks, that's better than none:)

I'm going to try to post a blog each day this week to help raise the awareness and let you guys know what I'm doing each day. Today I made the commitment to the MS Movement and to participate in the "Seven Days of Action."

Please feel free to share with me what you're doing to raise the awareness of MS. You can e-mail me at nicreagan_2003@yahoo.com. I may even post your e-mails here on my blog to help motivate others to contribute to the MS Movement.

Sidenote: Please say a special prayer for me on Wednesday. I got a call from Dr. Rivera's office, my MS doctor, last Thursday and he wants to see me regarding a letter he received from my eye doctor last week. That's all they told me, so this makes me a little nervous. However, I'm hoping he just wants to see how I'm doing and if there's anything he can do to help with the symptoms in my eyes. We'll see! I'll let you know how it goes.

In the mean time....do your part!! And join the MS Movement!!

"Unselfish and noble actions are the most radiant pages in the biography of souls."

"Huge Improvement"

2008-03-05T10:51:00.003-06:00

So, I went to the eye doctor on Monday and received good news. She said the huge floater was gone in my right eye and the inflammation in my right retina had decreased greatly. The inflammation in my left eye is almost completely gone. She said it was a "huge improvement" from last month's visit! I'm still on the drops at the same level, she said next month she'll consider decreasing the drops, but I'm not going to hold my breath.

I finally called my MS doctor to let him know about my vibrating cell phone in my tail bone. I spoke to his nurse and she said I don't need to come in, but it's great that I called so they can make a note in my chart to keep track of the date and time that the buzzing occurred. She said since I could pinpoint exactly when it started and since it's decreased significantly over the past week, I probably just strained my lower back lifting the groceries and aggravated some nerves, maybe even caused a little inflammation. The buzzing only happened once on Monday and once yesterday, so that's good. If anything new develops or the buzzing intensifies or becomes more frequent I'm supposed to call the nurse back and let her know.

Glad I could deliver good news today:)

"Happiness held is the seed; happiness shared is the flower."

Is there a cell phone in my tailbone??

2008-03-03T09:33:00.005-06:00

Today there is good news and bad news. We'll start with the bad news.....It all started last Monday, a week ago from today. I went grocery shopping and as I was putting my groceries into my car I had to strain to lift a bag that had both the laundry detergent and the dishwasher detergent, so it was a little heavy. Right after I set the bag into my trunk and stood up, I felt this vibrating sensation in my tailbone area. I seriously thought my cell phone was vibrating in my pocket, so I checked it and realized it wasn't my phone that was vibrating. It was my tailbone!!!! It felt like an intense buzzing vibration, luckily I had no other symptoms with it other than some lower back pain from straining to lift the bag. However, I was nervous to go to bed that night because I was afraid I'd wake up and not be able to feel my legs. The buzzing lasted consistently until Thursday. By Thursday, it was off and on buzzing and by the weekend it was just a few times a day. So far today I haven't had it yet, but it is still early in the day. I know I should probably call my MS doctor and let him know, but I may see how the rest of the day goes before I call. Pretty weird though!

So, for the good news now....I know in my last blog I was pretty down in the dumps, but I'm happy to say the optimistic more hopeful Nicole is back:).....for now. I'm going to research through the National MS Society's website for some sort of meeting or gathering that discusses the emotional side of dealing with MS. I remember when I was first diagnosed I received all of the pamphlets from the doctors and the drug companies explaining how they are there to help us physically and emotionally. I never really understood how much emotional support one with MS may need. I know what I go through with the ups and downs emotionally is totally normal for people with MS, but maybe I can get some insight on how to deal with it. I do appreciate all of you that sent me the awesome inspirational and encouraging quotes and for those of you who kept me in your thoughts and prayers, you guys helped pull me out of my pessimism. I am so thankful for all of you:)

I have a follow up appointment with my eye doctor today, so keep your fingers crossed that the inflammation in my retinas has decreased. I'm now prepared to stay on the drops indefinitely, but I'd like the peace of mind that the inflammation has improved since my last visit. I'll blog again this week to let you guys know how the appointment went.

PS-MS Awareness Week is next week, March 10-17! I'm trying to get something together to do my part to make more people aware, maybe you guys can think of something to do too to help out.....even if it's just giving someone my blog address and telling them to read it!

"I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back." -Maya Angelou

Eye Drops & Injections FOREVER??

2008-02-05T10:54:00.000-06:00

It has been so long since I've posted an update!! That's because everything WAS going great the past few months. I've been feeling good, other than a few bouts of tingling in my legs and sharp pains (which have fortunately decreased). I had energy through the holidays, of course remembering not to over do it though. I've been super busy with work, I have a lot more responsibilities now than I did before. And we've been planning Doug's graduation party....YAY!!! The light at the end of the tunnel is getting closer=)

I am posting today though with a bit of pessimism and frustration. I'm hoping that typing this all out will make me feel better. I've got two things to vent about: my eyes and my injections.

We'll start with my eyes.....I'll briefly remind you I have an eye disease called uveitis which is an inflammation of the retina. I've been on steriodal and non-steroidal anti-inflammatory eye drops for almost a year now to keep the inflammation down which in turn keeps my symptoms under control.....but CANNOT cure the disease. One drop is 2 times a day and the other is 4 times a day. My right eye had no inflammation in it 2 months ago. I convinced the doctor to let me stop the drops in my right eye because I was so determined to get off of the drops completely. It's getting expensive, annoying to remember what time to do the drops, and time consuming to leave work to see the eye doctor every month. Well, I saw her last month and some of the inflammation was back in the right eye, she wanted me to start up again on the drops. I refused! So, I continued treating the left eye, but prayed that the right eye would be okay. Well, I woke up Saturday with a giant black floater and a few opaque circles floating around in my right eye. I hated to admit that the doctor was right, but I called her anyway and she worked me in yesterday. She could see an increase in the inflammation and put me back on the drops in the right eye. I'm sooooooo disappointed....am I going to be on these drops forever?? The long term risks from being on the drops for so long are equal to the risks of letting the inflammation go untreated, so it's kind of no brainer what I should do. So, for now and hopefully not forever I will continue to watch the clock to see what eye drops I need to do next=( On to my next complaint.....

When I first started the injections all of the videos, pamphlets, brochures, etc. really encouraged people to stay on their injections.....Don't stop taking them, blah, blah, blah. And I couldn't understand how any MS patient would just stop taking the injections. I mean, the injections have been proven to slow down the progression of the disease, why would anyone not want to slow down the progression of their MS?! Well, now I understand how tempting it is to just stop! I'm so sick of shooting up EVERY day! It's really getting old and EXPENSIVE! My medication just went up. Luckily I have insurance to help me out with a lot of the expense, but for someone who doesn't have insurance, it would cost $2,096.54 for one month's supply of Copaxone!! Can you believe that?! Anyway, the thoughts have gone through my head that I've been feeling pretty good, maybe I'm ready to take my chances without the injections.

Then all of these thoughts run through my head (with the help of Doug), like why would you want to risk your ability to walk and see and work and drive? We all complain so much about all of the everyday things we have to do like work, driving our kids to sports, laundry, grocery shopping, etc. when everyone should be so THANKFUL that they are ABLE to do all of those things! I also think about the future and how I want to be able to play with my kids and take care of them and be the best mom I can be. I don't want my kids to have to suffer because their mom is in a wheel chair or she's too tired to take them for a bike ride because of HER choice to stop the injections. It also wouldn't be fair to Doug.

I also think of all of the people that have a much more progressive kind of MS and how they are in wheelchairs or have to use walkers, they can't work, they can't drive, etc. They would probably do anything to have the abilities that I have right now. They would probably SCREAM at me for stopping my injections, why would I want to risk ending up like them? I also think of all of the older people who suffer from MS who didn't have the option to take injections when they were first diagnosed because they didn't exist. If they had had the option and chose to take the injections they may not be in the state they are in now. They would think I was CRAZY for not chosing to take the injections.

Well, obviously I'm staying on the injections, but I'm just really discouraged lately. If I had some sort of idea if there would be an oral medication in the NEAR future I may be more optimistic, like an exact date when I could start taking them. But, for now I see myself on the injections FOREVER!!

I'm sorry for being such a WHINEY BABY!! I know I have so much to be thankful and hopeful for, but I'm just stuck in a real rut. I'm hoping that with the season of Lent starting tomorrow, I'll find some sort peace and refreshment of my faith in all of this.

I really don't have any encouraging quotes to leave you with today, maybe you can send me a quote to lift me up?

Slow down....

2007-10-29T09:38:00.001-05:00

Well, I guess I spoke a little too soon earlier this month. I've kind of had a slight set back, nothing too bad though. It has been a couple of months since I've had any symptoms other than just being fatigued at times. Well 2 weeks ago some of my symptoms came back=( I've been having tingling in my legs off and on and STABBBING, INTENSE pain in my thighs. I'm pretty sure I figured out why they started up again, I just have to figure out how to fix it. I need to slow down!! I've been overdoing it, especially on the weekends. I've just been going non-stop EVERY weekend and then work has been REALLY stressful during the week. So, a combination of the two has not been good for my body. The frustrating part is I'm only 26 and I don't know how to make myself slow down. I feel like I should be able to go and do whatever I want, but then I have to remember I can't anymore.....well I can, I just have to make time to rest in between.

I was at the mall Saturday and was telling Mom and Meemaw how frustrating it is that I get worn out just from going shopping (however I guess that is good for Doug and my checkbook;)! Anyway, I was saying that I worry about how I'll be able to keep up with my kids once I have them. Just after that conversation was over, we passed a woman that had NO ARMS at all!!! And she had 2 kids with her. It was like God's way of quickly reminding me that it could be worse. I mean, I may not have the energy all of the time, but at least I have my arms!!

I'll keep you all posted on my symptoms. Please keep me in your prayers that I'll quickly get over this small bump in the road and learn to RELAX and REST!!

And, just remember.....

"It could always be worse."

No news is good news...

2007-10-04T10:52:00.001-05:00

Sorry I haven't posted in a while, but I guess the old saying "No news is good news" is true! I've been feeling wonderful the past couple of weeks...knock on wood:) This past Tuesday I worked all day, went grocery shopping, carried the groceries up to my 2nd floor apartment, put them away, unloaded the dishwasher, did a load of laundry, exercised for an hour (back to my old time again....3 miles on the eliptical machine in 28 minutes!!), showered, made some tuna salad, and then finally relaxed with Doug. This may sound like nothing for those of you with kids, but it was a huge accomplishment to have the energy to do all of this in one evening!! The only disappointing thing about all of this is that I must take advantage of it now because you never know how I'll feel next week.

I did receive a little bit of frustrating news from my retina specialist. I've been seeing her every 4-6 weeks since March for my pars planitis (inflammation of the retina). I've been on steroid drops and anti-inflammatory drops since I started seeing her. Each time she says "Ohhhh, your eyes are looking a little better than last time, but I'd like to get them even better." So each time I go in with hopes she'll stop the drops and she doesn't. There are other options to decrease the symptoms (oral meds, injections in the eyes, etc.), but since I have 20/20 (with no contacts or glasses) she doesn't want to risk my perfect vision. She actually wants me to go back and have MORE tests done to see if I have some other auto-immune disease like Lupus, Lyme Disease, etc. I've been through these tests twice now: once 6 years ago when my eye disease first started and then again earlier this year when they were ruling those same diseases out in order to diagnose me with MS. So honestly, I'm not up for more testing. I finally have a diagnosis of MS, I've learned to live with it, the injections are getting easier every day, and I've moved on emotionally!! So, I'm not really sure what I'm going to do, I'm considering stopping the drops myself. When I was first diagnosed with pars planitis 6 years ago, it was my understanding that a HUGE percentage of patients with this disease have no cause for it (ideopathic) and there is no cure for it, you just learn to live with it. I learned to live with it years ago, so why go through more medical testing and emotional rollercoasters at this point?!

Okay, I'm done ranting about that now:) On a more cheerful note, Nicole's Angels are still brining in the money. We're over $4,600 now and still counting!!

"Love the moment, and the energy of that moment will spread beyond all boundaries."

$4,412.00

2007-09-10T15:20:00.000-05:00

The MS Walk was this past Saturday, September 8th, at the Kemah Boardwalk. As I told you in my previous blog, I signed up as a team captain and named my team Nicole's Angels. Well, we had the biggest team at the Kemah Walk!!! I had just over 40 people walking with me:) I was so overwhelmed with emotions at all of the support I have. People drove from all over the Houston area to show their support. We had matching t-shirts that were a real hit! I have an unconfirmed donation total of $4,412.00 that me and my team raised!! (I say unconfirmed because some people donated at the actual walk, which means those totals aren't added into my online total yet. So, really I raised even more than $4,412.00!!)

Despite the heat and extra humidity, we all had a blast at the walk! Afterwards we met back at my tent and ate fresh fruit and re-hydrated. They had a great D.J. and cool door prizes! Thanks again to all of you who made the effort to come out and walk with me! I am so blessed to have each and every one of you in my life:)

"I would thank you from the bottom of my heart, but for you my heart has no bottom."

I'm an even number again....

2007-08-28T11:43:00.000-05:00

So, I have this weird thing about being an even numbered age. I just feel like the odd numbers are unlucky, which obviously 25 was not a good year. So today starts a whole new, lucky year of being 26!!! Just walking to my car this morning I felt lucky, like this next year is going to be great:) I did freak out last night though because I thought I had my first gray hair!!! Doug inspected it and we discovered it's just really light brown....at least that's what Doug tells me. He's so awesome;)

That's really all I have to say today other than it feels great to be an even number again!!

"And in the end, it's not the years in your life that count. It's the life in your years."
-Abraham Lincoln

$2,200.00

2007-08-21T13:58:00.000-05:00

Just wanted to update those of you who haven't checked out my MS Walk page in a while. My team and I have raised $2,200.00 in less than 2 weeks!! My heart has truly been touched by this outpour of support. There are people that have donated in my name that I have never even met. All of you have been so amazing and so generous and I thank you from the bottom of my heart:) You have no idea how much your support means to me and everyone else living with MS. If you haven't signed up to walk with me and you plan to, please register online. Technically you can just register when you get there, but a friend of mine is having "Nicole's Angels" t-shirts made and I'll be sending out an e-mail to everyone who has officially registered online asking who wants one and what size. If you're not registered online you may not have the chance to order my specially designed, super cool t-shirts;) If you need any help or are unsure how to register online, I'd be more than happy to help you out. Just let me know!

Keep up the good work and please pass on the information to anyone else you think may be interested in donating and/or walking. Thank you again to everyone who has donated and/or signed up to walk with me! I love you guys:)

Here's a quote on motivation:
"Life's ups and downs provide windows of opportunity to determine your values and goals. Think of using all obstacles as stepping stones to build the life you want."

MS Walk - Kemah - September 8, 2007

2007-08-07T10:42:00.000-05:00

I decided to start my own team for the MS Walk in Kemah on September 8, 2007. Our team name is "Nicole's Angels." I picked this name because the people I invited to walk are all considered angels to me because you have all helped and supported me in some way. I sent out a mass e-mail with the links to my home page and my team page so you can sign up to walk with me or make a donation. I hope all of you can find it in your hearts to make some sort of donation, even if it's $25.00. Every donation brings us closer to a cure! My team fundraising goal is $1500.00....let's make it happen!! If you are unable to make a donation then come walk with me:) There's no registration fee. The more people that walk, the more fun it will be! And I picked Kemah because it is the closest location to most of my family and friends, so NO EXCUSES. If you can't make the Kemah walk, there is one in Katy on the same day and one downtown in Houston the following day. Here are the links to get more information and register in case you didn't get the e-mail:

My personal page: http://www.nationalmssociety.org/site/TR?px=3658802&pg=personal&fr_id=6582&s_tafId=33273

My team page: http://www.nationalmssociety.org/site/TR?team_id=94903&pg=team&fr_id=6582&s_tafId=33273

Please feel free to forward on the information to any friends or family you think may be interested. There are some e-mail addresses that I didn't have, so pass it along! Please e-mail me if you have any questions, nicreagan_2003@yahoo.com

Thanks for all of your support!!

If nothing else, join me for a little exercise:)
"If it weren't for the fact that the TV set and the refrigerator are so far apart, some of us wouldn't get any exercise at all."

It's in REMISSION...

2007-08-03T08:45:00.000-05:00

Okay, I have fabulous news for everyone:) I saw my neurologist yesterday to get my MRI results and he had nothing but good news. One of the lesions on my spinal cord has completely disappeared and you can barely see the other one! That means the medication is working!! Which makes all of the painful injections so worth it! He wants to see me back in one year unless something changes with my symptoms before then. And no more MRI's for a while. I do have to continue my injections daily, but he said he PROMISES an oral version of the drug is just around the corner:) Doug and I are so relieved and excited! It really puts all of the medical drama we've been through over the past 8 months in the past. We're moving on now!!

I want to thank all of you for your thoughts and prayers. I really feel like it wasn't just the medication that put my MS into remission, it was also all of you:) Please continue to keep me in your prayers and pray that the oral drug comes out soon!

Time to celebrate!!

"The more you praise and celebrate your life, the more there is in life to celebrate."

One step closer to a cure...

2007-07-30T12:55:00.000-05:00

My cousin Pam e-mailed the link to an article regarding a new discovery in MS research. Not too long later a couple of other people e-mailed me the link also. Thanks for thinking of my guys:) I just wanted to share the article with everyone else because they've come one step closer to a cure for MS by discovering a second gene that increases one's risk of developing MS. The more they find out about what causes MS, the closer they are to finding a cure! There's hasn't been this significant of a breakthrough in MS research in 30 years! Here's the link to the article, please take the time to check it out:

http://health.msn.com/healthnews/articlepage.aspx?cp-documentid=100167096

On a less exciting note....I had my MRI done last week. It was not what I would call fun, but it's over now! I got through the first part, the brain, the cervical spine, and the thoracic spine without the dye, with no problems. Then they pulled me out and injected the dye. They did the cervical spine first, then the thoracic spine. Three quarters of the way through the thoracic spine I had a bit of a panic attack. I really had to use the little girl's room, but didn't want to interrupt the MRI right in the middle. I was sweating profusely, was short of breath, and couldn't hold still. Ahhhhhhh!!! Apparently I was wiggling my feet a lot, so the woman asked what was wrong and I told her. She said hang on for 5 more minutes and you can go. They had to re-do some of the images because I was moving so much. Five LONG minutes later they pulled me out and let me go. When I came back to complete the last part, the brain, they had to inject me with more dye since I had used the facilities. I got through the brain and 4 hours later I was done:)!!!! You would think a MRI is a piece of cake, but it's a very exhausting and challenging procedure, both mentally and physically. Now it's over and I'm just waiting for my doctor's office to call me to set up an appointment to discuss the results. I'll keep you posted!

Don't forget to read the article! And please keep the scientists and all of the people who help fund the research in your prayers!

"There is a single light of science, and to brighten it anywhere is to brighten it everywhere."
-Isaac Asimov

3 Month Check Up....

2007-07-17T13:38:00.000-05:00

Just wanted to give everyone an update. It's been just over 3 months since I started my injections, which means it's time to go for my check up to see if it's working. I am having a MRI done next week, on Tuesday the 24th. They will take images of my brain, cervical spine, and thoracic spine with and without contrast. That means they'll take several images of each area and then pull me out of the machine, inject a dye into my veins, and then put me back in the machine to take more images. I'll probaly be there for a few hours. NO FUN!!! I guess the worst part is having to stay still for so long. At least last time I had a MRI I couldn't feel my legs, so it was easy to keep them still. This time will probably be tougher. Wish me luck!! Once my neurologist gets my results he'll call me to set up an appointment to go over my results and see how I'm doing. Everyone cross your fingers that everything is going according to plan. I'm feeling better, so I have high hopes that the MRI results will show the injections are working!

I'll post an update after I get the results!

On a lighter note, I would like to say Happy Anniversary to my AWESOME hubbie:) Can you guys believe it's been 3 YEARS?!! Oh, Doug is a lucky man;) We're having a romantic dinner tonight at Carmello's and then this weekend we're staying at Moody Gardens!

Today I'll leave you with a quote about love:
"Love, like a river, will cut a new path whenever it meets an obstacle."

Doug and I have definitely cut new paths over the past 8 months, and they're so much stronger and closer:)

Jinxed...

2007-06-26T14:53:00.000-05:00

Okay, I totally jinxed myself! When I posted yesterday I told you I would update you today. I had planned on telling you guys how it's been over a week since I've had a really painful injection. I must have jinxed myself because last night I had one of the most painful injections I've had yet!

Before last night, my injections were getting so much better (I'm sure the tequila shots I take prior to injecting help though;)....j/k!) I've been having only a little pain at the injection site and very little swelling and redness....now this is compared to say a month ago when it was REALLY painful, so I'm not saying they feel great now. I'm still lumpy and bruised feeling at all of the injection sites, but I think I must be used to it by now because it's not as bad as before.

I'm coming up on the end of my third month of injections which means I have to have a MRI done. The MRI will be of my brain, cervical spine, and thoracic spine with and without contrast (that means one complete series of films for each section and then they do each series all over again after injecting dye into my veins). The films with contrast allow the doctors to see my spinal cord and nerves. The doctor is looking for any change (hopefully a decrease) in the lesions I already have and he wants to make sure there aren't anymore that have developed. The purpose of my injections is to keep the lesions I have from progressing and hopefully make them inactive, as well as slowing down the progression / formation of any new lesions. So, basically the MRI films will show if the medication is working or not. The doctor also wants to keep an eye on the syringomyelia, which is the syrinx I described in my post on March 28, 2007 under the subtitle "The First Neurologist." He wants to make sure it has not expanded or changed since the last MRI.

Overall I've been feeling a lot better. I'm learning what my body should and shouldn't do now. So far, I'm living the same life I was living before I was diagnosed. The only differences now are a few things I've had to make myself more aware of: I really try to rest when my body tells me to (which is more than before), I must take my vitamin, I try to stay away from sick people because I catch a cold much easier now and it's a lot tougher to get well than before, and I must stay out of the heat as much as possible.

Before I go, I'd like to give a special thanks to all of you for reading my blog. You have no idea how touched I am each time I see a friend or family member that tells me they've been reading my blog. I said from the very beginning of this blog that my goal is to raise the awareness of Multiple Sclerosis and how it effects peoples lives. So, every time you read this blog, I'm fulfilling that goal! Please keep reading...

Quote on Happiness:

"Being happy doesn't mean everything is perfect. It means you have decided to look beyond the imperfections."

Save the date...

2007-06-25T16:11:00.000-05:00

I know it's been forever since I last posted on my blog. I promise I will update you tomorrow, but for now I wanted to let everyone know that there is a MS Walk in Kemah on Saturday, September 8, 2007 at 8:00am. There is also one in Houston the next day, Sunday, September 9, 2007. I think the Kemah one will be more convenient for most of my family and friends, and it's probably more scenic since it starts at the boardwalk. I'll keep you posted with details once it gets closer, but mark it on your calendars now if you're interested in walking with me! I'll be back with an update on my journey with MS tomorrow:)

Still lumpy, but it's okay now...

2007-06-06T13:56:00.000-05:00

I have some bad news and some good news. The bad news is I'm still LUMPY! The good news is, I'm pretty much done letting it get me down. I mean, what can I do about it? Not much. So, why waste time being frustrated with it. And actually the less I think about it, the less it bothers me. I took the advice I left you with in my quote from the last posting. So, onto other things.....

I've been feeling pretty good lately. I've gone to the beach a few times this summer and soaked up some Vitamin D. As long as I cool off in the water every now and then, I do fine. Last week Doug and I started working out again, we kind of got off track with all of our traveling in April and May. Instead of going to the gym one evening last week, we swam laps in the pool at our apartment. It was a great workout and a great way to stay cool:) This week we've hit the gym a few times and I seem to be dealing with the heat a little better....as long as they actually have the air on. I finally was able to do my 3 miles on the eliptical trainer in 26 minutes yesterday, which was what I was doing before all of my health issues started. I've been feeling really good since we started working out again.

I do want to brag on my awesome husband a little. He truly has been my rock through all of this and I am so blessed to have him. I thank God for him every day. I believe my diagnosis has brought us closer together than we've ever been, which says a lot because we were already such bestfriends. Okay, I'm done boring you with all of the mushy gushy stuff, I'm just so gratful and happy with my life right now and I wanted to shout it from the rooftops:) Can you believe we're coming up on our 3 year anniversary this summer:)

Thanks to all of you for checking out my blog. It means a lot to me that so many people care about me and think about me. I also thank God for all of you and your support!

I'm headed to Las Vegas this weekend, so here's the quote I'll leave you with:

"What happens in Vegas, stays in Vegas!" :)

Will I be lumpy forever?

2007-05-24T10:49:00.000-05:00

Well, I haven't blogged in a while because I'm kind of frustrated with the injections now. The injections aren't as painful as before, but now I have lumps at most of the injection sites. You can actually feel the lumps, they feel like knots with a circumference the same as a ping pong ball. I have these lumps in both thighs, arms, hips, and stomach. The drug company has a support team you can call if you have any questions, concerns, etc. I spoke to them and they said it takes the body 6 to 12 months to get used to the medication and recognize it. They say the best thing to do is apply heat to the area and then massage (no sooner than 24 hours after injecting). I've tried it, but it didn't help much. It's pretty painful to massage the lumps. I just feel bruised and sore in all of the injected areas. I've had some of the lumps for a week! I've also noticed when I inject the arms and legs I have a giant red circle around the area for about 48-72 hours (it usually lasts longer on the legs) and the circle is very warm.

I hope I don't sound too whiny or negative, I'm just expressing my frustrations. It's only been 6 weeks today since I started the injections, so I still need to give it a chance. Other than the lumps, I've been feeling pretty good if I'm in the air conditioning. If I'm in the heat for very long I'm drained and useless. I'm dreading our electricity bills this summer!

Hopefully next time I blog, I'll have good news that the lumps are gone!! In the mean time, I'm just trying to stay cool:)

Today my quote is dedicated to myself:
"Happiness is an attitude. We either make ourselves miserable, or happy and strong. The amount of work is the same."

Refreshed...

2007-05-11T17:16:00.000-05:00

Sorry it's been so long since I last posted, but I'm still trying to get out of vacation mode. Doug and I had a wonderful time in Puerto Vallarta. We were there for 4 nights and 5 days. Our resort was amazing! It was a much needed vacation and it really helped me put the past 6 months behind me. Before we left I would do my injections around 7:30 in the evening and then lay on the couch the rest of the night because they were so painful. Well, while we were in Mexico I didn't want to waste any time laying around. So, I got used to doing my injection quickly and then we were out the door for a night on the town. Since we've been back, the injections have become a lot easier. They're still just as painful, but if I keep my mind busy I don't notice the pain as much. Giving myself the injection has become just another part of my daily routine.

I've been feeling better for the most part, I was actually feeling great until this week. I don't think I'm ready for the summer heat. This was the first week where it was consistently warm everyday (and it hasn't even reached the 90's yet!) and I've noticed a difference in my body. If I'm out and about during the day (in and out of the hot car) I just get really drained and fatigued. Most healthy adults get tired and sluggish in the heat anyway, but times that by probably 5 right now, I have a bad feeling it's going to get worse as the temperatures rise. When we were in Mexico I had to stay in the cool pool. If I got too hot laying out in the sun, my legs and arms felt like jello and I felt like passing out. As soon as I cooled down in the pool, I felt so much better. So, I'll just have to accomodate this summer. I'll have to get my cardio workout by swimming, stay in the shade at cookouts, and I've heard they make cooling wrist bands and neck bands that have ice packs in them. I may be investing in some of them....maybe I'll even start a fashion statement.

I was just telling Doug last night that I think I've finally accepted my diagnosis and moved on. For the first month I was constantly on the internet researching MS. I can't remember the last time I googled MS. For the past several months the thoughts of my future were constantly in my head.....will I be disabled and end up in a wheelchair? if so, will Doug be happy pushing me around and taking care of me? will I be able to have kids? if so, will they have MS? will I be able to take care of them and run around with them? There were so many questions constantly running through my head. Now, I'm just living in the present and trying to enjoy everyday. I'm just thankful for waking up each day and getting another day to live. I'm really trying to live life to the fullest now and not get so stressed about small things. MS has changed my outlook on life.....in a very positive way. I feel stronger and more confidant, like I could conquer anything! I know some people get sick of hearing, "everything happens for a reason," but it really does.

I'll leave you with this:
"One day at a time - this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet to come. Live in the present, and make it so beautiful it will be worth remembering."

$7,483,316.56...

2007-04-24T10:52:00.000-05:00

I just want to send a great big thanks to the riders, volunteers, donors, and sponsors of the BP MS150 that took place last weekend. So far the total amount raised is $7,483,316.56 and still counting (the pledges aren't due until May 22). I have an awesome story I'd like to share....I received an e-mail yesterday from my Aunt Renee. She forwarded me another e-mail from a friend of hers that rode in the MS150 this past weekend. At the start of the race she received a bandana. She wrote MY name on the bandana and tied it to her bike. When she got tired, she would look at my name and KEEP ON GOING!! She has offered to mail me the bandana as a reminder of all of the people who care. I was so touched by this story that it brought tears to my eyes. There are so many people who really do care and are willing to sacrifice their time and energy to help me and the other MS fighters. It's so crazy to think about how much this friend of my aunt's has impacted my life and I've never even met her! If those of you reading this participated in the MS 150 in some way or know someone who participated.....tell them they ROCK!!

On another positive note, my injections are getting better:)!! They're still painful, but not as bad as last week. And the welps at the injection site are not as big and do not last as long. I've been feeling quite well these past 2 weeks. I seem to have more energy than I've had in the past few months!

I thought this would be an appropriate quote since I'm headed to Puerto Vallarta on Thursday for a nice little vacation! "Vacation used to be a luxury, however, in today's world, it has become a necessity."

~Now isn't that the truth?!:)

I'm officially a pin cushion...

2007-04-17T09:51:00.000-05:00

Just thought I would update you guys on how my injections are going. Last night was my 5th time to inject. The actual process of setting up the autoject and then injecting the medication has gotten a bit easier. I'm definitely less nervous to do it, but still have a little anxiety when I see the clock is almost to 7:30 (that's become my injection time)! The pain and the welps at the injection site have not improved much. The intense wasp sting pain lasts about 30-45 minutes, then it's just a dull pain for about 2 hours. The welps are present until I wake up the next morning. I still feel bruised at each injection site thus far, which means tender areas in both arms, both hips, and the left leg. I would have to say the worst area to inject so far has been the arm and the leg because I don't have quite as much cushion there as in my hip. Tonight will be my right leg and tomorrow night will be my stomach. Then I'll start the cycle all over again. But, like I said in my previous post....the injections sure beat the alternative!

FYI....the BPMS150 is this weekend. Hopefully some of you are able to volunteer or ride in it to help support research and programs for people suffering with MS! Unfortunately I will not be in town to volunteer, we'll be in Ohio for a wedding. Let me know if any of you are involved!!

I survived my first injection...

2007-04-13T10:51:00.000-05:00

I finally got my medication, Copaxone, this past Wednesday. We met with the nurse yesterday afternoon so she could train me and Doug on how to give the injections. The nurse has had MS for the past 15 years and has been on Copaxone for 6 years and has not had an "episode" in 6 years. First she went over everything from the areas to inject, what to expect afterwards, skin reactions, traveling with the medication, etc. She answered all of our questions and then we got started on the actual injection training. YIKES!!

I am so thankful for my "autoject," which is the automatic injector. You just put the prefilled syringe into the autoject, place it on the injection site, and click the button. You have to count to 10 before you remove the needle from the skin to make sure all of the medication is released. She let me pick which area I wanted to inject, I went with the back of the arm because I figured it would be the most awkward area to reach. The areas you have to choose from are the back, fleshy part of the arms, top of the thighs, the stomach area just below the bellybutton, and the low back/hip area. You have to rotate areas every day and cannot do an area more than once a week. So, I sat down and rested my arm over the back of the chair to roll the fleshy part up, which still didn't give me a lot to work with. I took a deep breath and clicked the button. I didn't even feel the needle go in because it's so tiny and only goes in about 6 millimeters (on the autoject you can adjust how far the needle goes in depending on how much "thickness" you have, luckily I don't have much, so it doesn't need to go in very far). For the first 30 seconds I felt nothing. Then all of a sudden it felt like a wasp was stinging me. It got more and more intense for about 10 minutes. After about 15 minutes all I felt was soreness in the arm. I had a giant red welp at the injection site, which the nurse said was very normal. She also said the stinging was normal, she just didn't want to warn me about it before because she knew I was already really nervous. The injection site bled a little. The nurse said it doesn't usually bleed unless you hit a blood vessel, which doesn't happen often. But, of course I would hit one on my first try!! The red welp went away after about and hour. I had a red dot at the site for the rest of the evening and this morning you can't see anything at all:)

Today my arm just feels a little sore and bruised, nothing too bad though. The nurse said every injection reaction isn't the same. Some possible side effects are chest tightness or chest pain, dizziness, nausea, or vomitting, but these aren't very common and they should only last for 15-30 minutes if they do occur. The usual side effects are at the injection site and include the burning and stinging pain, itching at the site, redness, welps, swelling, lumps, bruising, and bleeding. Sometimes the welps and/or lumps may last for a week, luckily mine yesterday only lasted 1 hour. So, it's kind of an experiment every time! The nurse said the first 6 months are the toughest because that's how long it takes the body to recognize the medication. After a few years she no longer had the stinging pain or the injection site reactions because her body got so used to the medication. So, if I can stick it out for a while I think it will get better.

I'm really going to try to not complain too much about the injections because yesterday I was briefly reminded of what the alternative is. I saw a girl with MS in the waiting room while we were waiting for the nurse. She was probably in her early 20's and had to have her mom's assistance while walking and she was shaking a lot. I almost burst into tears knowing how blessed I am that they caught my disease so early and that I have access to such awesome drugs. I just pray that my body responds well to the medication, so hopefully I don't end up like that girl or like the other MS patients with disabilities. It's kind of scary to see what could happen. Anyway, on a more positive note.....I survived my first injection!!!:) I have to do the injection around the same time every day. So, we'll see how this evening goes....

I'm just so happy to have started my journey to SLOW this disease. I can do whatever I want now and know that my body is being protected by Copaxone. I'll have to have a MRI done in 3 months to check the lesions on my spinal cord. The goal of the medication is to minimize them, make them inactive and prevent any others from forming.

Thanks so much for your continued thoughts and prayers!

Here's a great quote from "The Secret":
"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly."

Frustrated...

2007-04-09T11:20:00.000-05:00

Well, I still don't have my medication yet! I've spent another morning on the phone with the insurance company. Supposedly they don't have all of the information they need, so my doctor's office will fax the information today, but who knows how long it will be until the specialty pharmacy will actually send the medication. It may be a few more days, I'm just trying to remain calm and patient. I've been told that stress can trigger an increase in MS symptoms or even trigger another episode. So wouldn't you think the drug and insurance companies would work together to get you your medication quickly?! Oh well, it's out of my control right now.

I hope everyone had a Happy Easter. I sure did! I got to be with my awesome family:) Stay tuned for news on the medication...

Still Waiting

2007-04-03T14:30:00.000-05:00

I know some of you keep asking if I've started my injections yet and the answer has been no. I found out yesterday why it's taking so long. The drug company sent my prescription to a specialty pharmacy that is not considered in-network with my insurance plan. So, after I spoke to them yesterday, they sent the prescription to the correct specialty pharmacy. It can take up to 72 hours from the time the pharmacy receives the prescription until I'll hear from them. They have to get the benefits from my insurance and get pre-authorization and blah, blah, blah. So, it may be the end of the week or even next week until I get started. I'll definitely update you guys once I finally get started! Has anyone watched "The Secret" yet?

The Secret

2007-03-30T09:40:00.000-05:00

Today I woke up and CHOSE to have a good day! Last night we watched The Secret, it's a DVD that was passed on to me by the same special person that encouraged me to start this blog. If you haven't seen it, you need to. It's a video for everyone! The Secret has been passed on for centuries and centuries. It was even used by Plato, Newton, Einstein, Shakespeare, Beethoven, and the list goes on. After watching it I felt very inspired, encouraged, and optimistic. You have to make your own conclusions after watching it. Not everyone understands it or interprets it the same. Try not to get too caught up in the scientific aspect of it and don't take it too literally. I took it to be more of a spiritual and positive message that already existed in my mind, but now I know how to apply it to my everday life. Okay, I'll stop talking about it now and just let you watch it for yourself. Here's the official website of The Secret movie http://www.thesecret.tv/home.html. Enjoy!

Let me know after you watch it. I'd like to know what you thought about it.

Why I started this blog...

2007-03-29T10:08:00.000-05:00

The purpose of this blog is to keep my family and friends updated on my health and also to increase the awareness of MS. Until this whole ordeal started, I knew very little about MS. Now that I've done all of my research I realize how big of an effect this disease has on so many people, not only the people with MS, but their families and friends as well. Since I was diagnosed, I feel like I have some sort of calling to increase the awareness of Multiple Sclerosis. I'm not sure yet exactly what I'm supposed to do, but I think this blog is a great start. I also plan to participate in a couple of walks in the fall....I'll keep you posted on those dates and locations, so you can walk too!

I'm hoping that maybe someone with MS or someone newly diagnosed with MS may come across my blog too. I had the pleasure of meeting a fellow patient at one of my doctor's offices who is my same age, 25, and was diagnosed with MS in September of 2006. We talked a little in the waiting room about our new experiences, symptoms, emotions, etc. She gave me her phone number and I called her a few days later. Just talking to someone else with the same disease as me helped SO MUCH! Not to mention, her symptoms were a lot worse than mine, so I quickly realized I could be a lot worse off and should be thankful for making just about a complete recovery from my first attack. (I do still deal with the off & on tingling in my legs when walking or when exposed to heat or when bending my neck down towards my chest, but it seems to be less and less every week.) Anyway, back to my mentors.....I also got in touch with another woman who is 30 and has had MS for 10 years. Again, talking to her made me feel more optimistic and even relieved to know this isn't the end of my life. Both of these girls I talked to were so bubbly and sweet. I really do thank them for taking the time to talk to me. I hope one day I can return the same favor for someone else.

Even though my family is so supportive and understanding, they still don't truly know what I am going through. But, these two girls do and so do the other 400,000 Americans with MS. So, my point is that hopefully this blog will reach out to other MS patients or even friends and family of MS patients and help them in some way.

Please feel free to comment on my blog, if you have any questions or thoughts. I'll be keeping you updated on how I am, as well as any new developments. For now, I'm just getting used to having good days and bad days, lately I have more good than bad:) Some days I have energy, some days I deal with fatigue. My main goal now is to keep on going, but to also listen to my body. I'll be blogging soon about starting the injections....stay tuned!

How my journey began...

2007-03-28T14:53:00.000-05:00

Okay, here goes....I'm not really sure how this whole blog thing works yet, but I'm giving it a try. A very special person suggested I create a blog to keep track of my new journey I've embarked on....LIVING with Multiple Sclerosis.

The Beginning - November 20, 2006
I guess I'll start with a brief (well, it won't seem brief, but it really is compared to what I've been through) description of how it all started. I've been completely healthy my entire life until November 20, 2006. I went to bed that Monday night and noticed my last two toes on my right foot were numb. When I woke up the next morning my body was completely numb from the waist down. I knew if something was touching my leg, but I couldn't really feel it....kind of like when you have dental work done and your cheeks and mouth feel numb. I also couldn't feel heat or cold. I could walk, but I had to do it a lot slower and more carefully because I felt very uncoordinated and off balance. I was pretty worried, but thought maybe I had a herniated disc or something that was applying pressure to a nerve in my lumbar spine. I thought, well luckily I work in an office of orthopedic surgeons, I'll just have one of them check out my back. That was on Wednesday, the day before Thanksgiving. Unfortunately, my x-rays and MRI of the lumbar spine were completely normal. At the time I was thinking of how terrible it would be to have a disc problem at such a young age, but now I realize that would have been a good diagnosis compared to the real one. The orthopedist told me if the numbness wasn't gone by Monday, once we returned from the Thanksgiving holiday, then I should see a neurologist. This really worried me because my mom had to see a neurologist several years ago to have testing done for Multiple Sclerosis (MS). She was having tingling in her legs for a while. In the end they found she has a B-12 deficiency, so she has to take an injection of B-12 once a week. Well, she's supposed to take it once a week...MOM!! So, of course the letters MS were constantly in the back of my head.

The Primary Care Physician - November 27, 2006
The Monday after Thanksgiving I visited my primary care physician. He was worried once he heard all of my symptoms and those same two letters, MS, popped in his head. He had a great concern for me because his mother has MS and is now confined to a wheel chair because back when she was diagnosed there were no drugs to slow the progression of the disease. So, he sent me for an MRI of the entire spine and set up an appointment with the neurologist.

The First Neurologist - December 6, 2006
The neurologist showed me my MRI films and explained the findings. They found 2 lesions or plaques in my cervical spine, which is one of the factors in diagnosing MS (lesions on the spinal cord and/or brain). They also found a syrnx in my cervical and thoracic spinal cord, called syringomyelia. As far as the lesions go, he wanted to do a MRI of the brain to see if there were any lesions there and then he wanted to do a spinal tap to check the fluid for oligoclonal bands (which are linked to MS). As for the syrinx, he felt like I have had it my entire life and just never knew about it. He just wanted to keep an eye on it to make sure it doesn't expand. If the syrinx were to expand it could apply pressure to the nerves and cause permanent paralysis. I've seen two neurosurgeons to get an opinion on whether or not the syrinx needed to be removed or drained and the answer was no, not at this time. I'll just need to have periodic MRI's done for the rest of my life to monitor it.

I had the brain MRI done, there were luckily no lesions found. I then had the spinal tap done and have been traumatized ever since. The neurologist that did the spinal tap had an incredibly difficult time, which caused me an incredible amount of pain and torture. I won't go into too many details since some of you reading this may have to have a spinal tap at some point in your life. As if the spinal tap wasn't enough, I had to go back to the hospital three days later to have a blood patch done because the spinal fluid was leaking from the MULTIPLE punctures done during the spinal tap. The leaking spinal fluid was causing me the worst headache you can imagine... my younger sister, Mel, can relate (she had the same thing happen after her spinal tap last year). But, the headache stopped almost immediately after the blood patch! It took me about 2 months to fully recover from the procedures. I couldn't even lift a gallon of milk for 2 months because of the pain and pressure in my lower back. It's still to this day sensitive to touch. The results of the spinal tap showed one oligoclonal band, which is another one of the three factors used to diagnose MS. However, this neurologist didn't diagnose me with MS because I didn't have any lesions in my brain. He diagnosed me with transverse myelitis. He wanted to wait and see what happened in the future. He said if I have any more episodes to call him. Well, obviously I wasn't satisfied with this answer. Why wait if I have two factors pointing to MS? The next episode could be a lot worse.

The Second Neurologist - December 27, 2006
My legs were still partially numb, but I could actually feel some areas again....I decided to get a second opinion. The second neurologist wasn't able to give me a diagnosis. He suggested I see a neurologist in the Medical Center that specializes in MS. So, on to the next doctor.

The Third Neurologist - January 18, 2007
At this point I could feel my legs again completely. By then I had tingling whenever I walked, was exposed to heat (showers, etc.), or when I bent my head down towards my chest. The neurologist we saw this time was not the MS specialist we were supposed to see....go figure, they had the same name! But, we found out the MS specialist wasn't on my insurance plan anyway, so we kept the appointment with the non-MS specialist. This guy sent me for 3 different evoked potential tests to check the response times of my nerves. I also had to see a neuro-opthamologist to have more tests done to check out my optic nerve, etc.

Follow Up Appointment with Third Neurologist - February 22, 2007
All of the evoked potentials came back normal, as well as the eye tests other than my eye disease, Pars Planits (inflammation of the retina), I've had since 2001. So, we got the dredded news that this doctor wanted to start treatment for MS, but he never would actually come out and say I have MS. He just said he has enough abnormal results (MRI reports and spinal tap) to start treatment. This was a little disturbing, not to mention we didn't feel 100% comfortable with this doctor in the first place. He was a little on the odd side, even for a neurologist. He just gave us a few pamphlets on each drug and basically said pick one. I left there feeling kind of numb and confused. Did I have MS or not? This leads us to the fourth and final neurologist....bare with me, I know this is becoming a novel:)

The Best Neurologist EVER - March 16, 2007
We met with one of the top neurologists, he's actually the medical director of the Maxine Mesinger MS Clinic in the Medical Center. Talk about BRILLIANT! I absolutley loved him! He was personable, funny, sincere, and he explained things very clearly. He did officially diagnose me with Multiple Sclerosis, which we luckily caught in the early stages. He does want to start treatment, he recommended two different drugs, both are low doses compared to the other two MS drugs. So he sent me home with these really cool packets with DVD's to watch and decide which one was best for me. All MS treatments are for the rest of your life. There is still no cure for MS, but the purpose of the drug is to slow the progression of the disease and decrease the amount of exacerbations / attacks. One is an intramuscular injection one time a week with a fairly large needle, but the side effects include flu-like symptoms. The other one is once a day with a much smaller needle and an auto-injector. This injection only goes under the skin and there are usually no side effects. So, after a lot of back and forth stress, I finally chose the smaller needle under the skin....Copaxone. I should be getting a call by Friday or Monday to set up a time to have a nurse come out to my house to train me on the injection. I'll be sure to keep you updated on how that goes....OUCH:( I'm really nervous, so please keep me in your prayers!

PS-I realized after reading this that I say "I" alot, but every single I should be "WE" because I did not go through this alone for one minute. I have the most amazingly supportive husband who went to every single doctor's appointment with me and rode with me the entire time on this emotional rollercoaster! I couldn't have done this without him or my family and friends. I am so very blessed to have such awesome and loving family and friends. I thank God for them every day. I love you guys:)!