Slow down....

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...

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

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....

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

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

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...

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...

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....

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...

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...

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...

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?

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...

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...

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...

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...

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...

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

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

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...

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...

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:)!