Tuesday, April 24, 2007

$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?!:)

Tuesday, April 17, 2007

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!!

Friday, April 13, 2007

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."

Monday, April 9, 2007

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...

Tuesday, April 3, 2007

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?

Friday, March 30, 2007

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.

Thursday, March 29, 2007

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!