Monday, October 13, 2008

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

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 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.

Thursday, September 4, 2008

Back to the odd numbers again....

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 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

Friday, August 8, 2008

Nicole's AWESOME Angels

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

Friday, July 18, 2008

Join the Movement to End MS

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:

Here's the link to my team page:

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: 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

Tuesday, June 10, 2008

The heat is on....

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."

Monday, April 28, 2008

Paintings for MS

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!!

Thursday, April 24, 2008

Happy 1 Year Anniversary to Me!!

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 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'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.

Wednesday, April 16, 2008

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

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!!

Tuesday, March 18, 2008

Summing Up MS Awareness Week

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."

Sunday, March 16, 2008

Day 7: Suport the Society

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:

Option 2: Go to my homepage for the MS Walk in September and donate through me and my team, Nicole's Angels:

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:

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:)

Saturday, March 15, 2008

Day 6: Make your Mark

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:

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 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!!!

Friday, March 14, 2008

Day 5: Find Opportunities to Volunteer

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 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:

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:

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!!! :)

Thursday, March 13, 2008

Appointment with Dr. Rivera

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

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.

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):

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."

Wednesday, March 12, 2008

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

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!!

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:

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

Tuesday, March 11, 2008

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

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 only takes a minute....seriously!! The link is below:

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

Monday, March 10, 2008

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

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.

I'm going to do my part each day, please do 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 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 your part!! And join the MS Movement!!

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

Wednesday, March 5, 2008

"Huge Improvement"

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."

Monday, March 3, 2008

Is there a cell phone in my tailbone??

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

Tuesday, February 5, 2008

Eye Drops & Injections FOREVER??

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 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?