Once again I want to thank all of you that have gone out and supported the MSAA by purchasing the Everybody Falls CD. This has been a great experience to become involved with such a project. It is rewarding to see so many people come out to help all of us who have this illness. Our total sales so far equal $1150.

I am so proud of my family. If it was not for the help and support they have given me and this project I am not sure I could have put all of this together. My dad has been a star! He has been running around for me to pick up tables and get the posters....none of which would fit in my car. He has been selling the CD's at a second table the whole time. There is no way that I could have done this without him! My sister has also been a great help. She has been out there almost everyday and that is a big deal for her seeing how she typically does not do well in situations where she has to speak to people (she has social anxiety). Even my mom has sold a bunch of CD's and she is busy working. I think Nathan is really the little salesman though. He is so cute that it appears people can't say no to him. They see this cute boy asking for help to support people with MS, like my mom, he says. I hope all of you have such a great support system.

I am currently taking a couple days off from the Wal-mart scene. Nathan is home sick today, he sounds horrible.....as if he has swallowed a piece of cardboard, and I have developed a little bit of a cough. I think taking a couple days off will be beneficial so that we are running at full capacity come Wednesday when we are scheduled to go out again! Currently Nathan is sleeping, but I am thinking that I will see if I can get him into the walk-in clinic. I just want to make sure that he does not have strep or something that needs antibiotics.

On a different note.....each day I do appear to be feeling better. I still have symptoms (I don't think I will ever be completely without) but I also have more energy and that is huge for me. I can't remember the last time I was able to get up in the morning and not feel like I needed to go right back to bed. I can't tell you how great it feels to get up and actually be awake. It sounds so silly to say, but really it is a big deal. Anyway, I am hoping that this will continue to work and that I will only get better everyday. Nothing be positive thoughts and expectations! :)

Hopefully all of you are doing good. Please take care of yourselves and keep in touch.

Jaime

Hi everyone. I am sorry I have not written anything in a while. I have been very busy helping to sell the Everybody Falls CD. My family has been out at the local Wal-mart stores selling the CD and in the last two days we have already made $620. :) Every dollar helps, so I am really happy that I am feeling well enough to be able to do this.


Tonight I was on the local news and tomorrow morning at 7:20 am and 5:50 pm I will be on the local news radio station helping to raise awareness of MS. The radio station had me go in yesterday to do a 5 minute interview and it will be played tomorrow. It turned out pretty good...I was very nervous, lol, and I am hoping that I will be able to get a copy of it (they said it could take a couple days but that they would get a CD made for me). I am hoping to get it and put it up here!

I want to thank all of you that have purchased a CD. I really think this is a great project as it will be not only bring more awareness to MS but raise lots of money to help all of us.

I also am happy to report that I think I am responding well to the Novantrone. The first couple of weeks I was not so sure, as I was still having a lot of problems. For the past week though I have had more energy and over all am noticing that each day I seem to feel just a little bit better. Now I am just hoping I will continue to respond. I did have an eye appointment on Monday that showed my ON has not gotten any better though, so I am just hoping that is because it can take a long time for it to get better. I have heard sometimes it can take a few months before the ON significantly improves and so I am sure that is all that is happening.

I hope that all of you are doing well. Please take care of yourselves and please support MSAA & Everybody Falls.

Jaime

As a follow-up to yesterdays post you can now listen to two of the songs from the Everybody Falls CD.

To purchase the CD please click here and you will be redirected to the Albert Adair Designs website who is the Official Sponsor of the “Everybody Falls” Charity CD for MSAA. The cost of the CD is $10 and it is going to a worthy cause...helping each of us touched by MS!

I got an email a while back from Jilladair Carlson, the music producer for the upcoming MSAA benefit CD: Everybody Falls (see previous post about the CD and email from Malcom at the MSAA). I wanted to know what I could do to help. I figure we all deserve a better quality of life with this illness and if there is something I can do than I want to do it. After all...this helps each of us who are touched by this illness.

I had a nice conversation with her and they need people to volunteer time trying to promote the CD locally. The Safeway stores in her area are letting them set up a table to promote and sell the CD. I decided to see if the Safeway store in my town would also let me set up a table. Every CD sold helps us..so why not? Unfortunately the Safeway stores in my area were unwilling to let me set up a table. They are overwhelmed with all of the breast cancer fundraising. I got the phone number for the regional corporate offices however, and I am hoping that in March we can set up a way for the Safeway stores to ask people when they are checking out to donate a dollar to MS. It seems to me every time I go shopping they ask me to donate to this charity or that one, but it is never for MS. Since MS awareness week is in March they said they can probably do something at that time (I am hoping for a full month, however...a week just is not long enough).

Next I called Costco. I figured this is a company that is founded out of Washington and may want to help (CD was created and produced out of Washington as well). They have a corporate policy that states they cannot allow anyone to sell items that are not directly part of Costco. The manager was very nice about it and explained that there are some organizations that they would not want to be associated with and the law states that if you allow one organization to set up you have to allow all of them (no discrimination I suppose). He wanted to help however and asked that we contact the corporate office donation person to arrange for a donation to be made. It is nice that they want to do something! :)

Finally I called Wal-Mart. I have heard that they are disability-friendly and sure enough. I am all set to promote/sell the CD starting on the 25th. They are giving me the afternoons on Wednesdays and Fridays at the Richland location and then I get to set up on Saturdays and Sundays at the Pasco location. They were really excited to be able to do something to help out!

Next I sent out an email to the local high school clubs asking for volunteers to help promote/sell the CD. I have not gotten any bites yet but it is still early. I then got a hold of the three local news stations, KNDU, KEPR, & KVEW, and they are going to do a news story on the CD and our fundraising at Wal-Mart....according to the newsroom they will probably come out the first day I am at Wal-Mart and do the story. This should give us some good advertising so maybe people will come out and purchase the CD to support the MSAA. I am also hoping to get a hold of the local newspaper so that a story can be published. It is about time there is some awareness in my area of MS.

So even though I have not been feeling the greatest I can say it felt pretty good to do something good today! It was nice to be able to get on the phone and make some things happen....especially knowing this will help each one of us touched by MS.

If you are interested in helping out as well, please let me know. Leave me a comment or email me. I am sure the Wal-Mart in your area would be happy to let you come by for a weekend or a couple afternoons to also promote the CD. The more people who help out the better! For more information on the CD or to purchase it online, please go to www.brightercd.com

I hope you are all doing well. Take care.

Jaime

I know it has been a while since I have written anything. I am sorry for that. I have been really tired and not feeling well. Over all the chemo went well, I think that my immune system is just run down right now because of the chemo and so I am hoping I will soon start to feel better. The oncologist explained to me that the first two weeks is when your immune system (blood counts, etc.) are lowered and so it is important not to over do it and not to get sick. Well, I am trying really hard not to get sick but I think I over did myself this weekend. Oops! He explained that the blood counts are at their lowest on the 14th day (which for me is on the 20th) and then the immune system starts to rebuild itself. I am staying positive that once that happens I will feel better than ever! One can hope.

I have had an increase in my MS symptoms over the last few days....headaches, fatigue, but the worst would have to be that I am shaky (feel off balance) and my eyes are acting up again. Once again that twitch has decided to show itself and my vision has not been great (even with the glasses on). I have also been having a whole lot of dizziness/vertigo...not sure what to call it. I look up, down, to the side, sit up....all things that seem to throw me off. My hope is that this is all a fluke but there is always the thought in the back of my mind that this better not be the start of something more. I have already had 3 relapses in a year....this better not be a 4th. Not to mention the last one was just in August. I need more than a month in between relapses thank you very much! So....nothing but positive thoughts. :)

I sure hope that all of you are doing well. I can only take a little bit on the computer at a time, so I have not been able to keep up with you all as much as I would like. I have missed you and will do my best to get around to each of you as soon as I can. Please take care of yourselves.

I have not done music in a while and so I decided to put this on. I love this song and especially the guitar! Dave Matthews & Tim Reynolds #41

New Medicare Policies Restrict Mobility
People with multiple sclerosis and other disabilities could lose mobility and independence under new Medicare policies that restrict coverage and significantly reduce reimbursement for power mobility devices. MS activists are taking action now, before these policies go into effect November 15, 2006.

MS Action Network members are calling and visiting legislators in their home districts during the electoral recess. The MS Public Policy Office is meeting with legislative staff on the Hill and partnering with other patient groups, such as the National Coalition for Assistive and Rehab Technology (NCART). And chapters are building grassroots support and raising attention with their local news media.

The Society is calling on members of Congress to ensure that the Centers for Medicare and Medicaid Services (CMS) revises these policies. New guidelines must be created to account for the progressive, functional needs of people with MS and other disabilities, as determined by medical experts. The increased burden on caregivers and other providers, as well as the disincentive to manufacturers, also must be carefully considered.

Don’t let people with MS lose mobility. Click here to take action now, and continue to keep an eye out for news coverage on this issue.

Click here to read what CMS is saying about the new Medicare power mobility device policies.
Click here to view a video against the policies from the National Coalition for Assistive and Rehab Technology (NCART).

NIH Funding and Other Appropriations on Hold
Congress made some progress on fiscal year 2007 appropriations last week, but failed to complete most of them before the end of FY 2006. Only two appropriations bills — funding Defense and Homeland Security — have been signed into law. The remaining bills will need to be finalized after the midterm elections or next year.

Congress passed a temporary spending bill — a Continuing Resolution (CR) — to provide ongoing funding at the FY 2006 rate for programs under the lingering appropriations bills. That includes the Labor, Health and Human Services (HHS), and Education bill that funds the National Institutes of Health (NIH), which is important in advancing research for people with MS. The CR is written to last until November 17, 2006.

Fight for FundingIn the meantime, members of the Senate and House are fighting for increased funding for medical research. Senators Specter (R-PA) and Harkin (D-IA) authored a “Dear Colleague” letter to Senate leaders seeking support for a $7 billion increase over the President’s request for education, health, and labor programs.

House moderates, led by Representative Castle (R-DE), also sent a letter to House Majority Leader Boehner (R-OH) urging him to keep his commitment to providing an additional $7.2 billion to the Labor, HHS, and Education bill. Currently, both the Senate and House bills fall short.

The MS Public Policy Office has furthered that effort by contacting key legislators and reminding them of the importance of NIH funding for people with MS.

After the ElectionsA “lame duck” session tentatively is scheduled to convene on November 13, at which time work is expected to resume on the remaining appropriations bills. Congress could pass all the bills, some of them, or enact another CR. Exactly what will happen depends in large part on the results of the midterm elections and any changes in congressional leadership. We will continue to keep you informed on this process.

Be an MS Activist … Vote
Election Day is November 7, 2006. With many contentious issues and races across the country, it will be especially important for you to cast your vote this year. Click here for more information on voter registration and elections in your state.

Email sent by the National MS Society Advocay Department.

Let me just start by saying how much I love my Oncologist. He is sharp and caring to boot! He was very thorough....went over my medical history and some concerns he had in regards to some bloodwork that was done. And, of course we discussed my MS.

When I arrived at the appointment I was sent straight to the lab for some bloodwork. It was interesting to me that he had ordered a LDH seeing how this is a test that I get once a year to monitor the lymphoma I had.....or thought I had. It turns out that what I thought was resolved from the surgery I had removing the lymph node thus removing the malignant cells is not actually resolved. Sure those particular cells were removed through surgery, but I do have Indolent Lymphoma. Next he talked to me about my liver. My liver function is currently normal...that is good news (has been since I have come off the Avonex & oral steroids) but the CT that was done in July showed my liver was enlarged. I knew this....no biggy right? I figured this was because of the Avonex as well. After all, my GI doctor ran a whole slew of tests to make sure there was nothing else going on with my liver.....and everything was normal (so I was told). He tells me that yes, everything was normal but one of the tests uncovered that I carry a genetic marker found in a rare type of liver cancer (at least rare in this country). It is called Hepatocellular Carcinoma. This type of cancer is slow-growing and usually not diagnosed until later in life when it is too late to do anything.....once cirrhosis has kicked in. It does not usually have any symptoms until later in life and so it can be hard to treat, however if it is caught early then there are options. They can do surgery to remove the tumors and follow-up with chemo and/or radiation. Fortunately for me there is a good chance that I only carry the genetic marker for this and don't actually have the cancer. Not to mention that if I was to develop the cancer my Oncologist would be on top of it seeing how he is aware of my risk factor and I will be tested every so often.

After being somewhat overwhelmed by all of the information I was given we got into what I was really there for....treatment options for my MS. He talked to me about the Novantrone (a.k.a. Mitoxantrone) and told me that he was happy to write the orders and get me started. I am scheduled for tomorrow at 2pm. He talked to me about the risks, side effects, etc. and told me that there is a limit to the number of doses because of the fact it can be cardiotoxic. He then told me that he would be happy to see me every three months and although I would need to see my neurologist (of course this is a given) he would be happy to write orders for each treatment so that I don't have to do the treatments in Seattle and have to travel after having the treatment (just in case I do get sick). He also told me about another chemo drug, Cytoxan, that he has some MS patients on. He mentioned this would be a good option for me to transition to after the Novantrone. I was happy to hear that there are more options out there....and more coming everyday!

When I got home of course I looked up information on these cancers as my head was kind of spinning. It turns out that one of the treatments used for Indolent Lymphoma is Rituxan which has been in the news lately as one of the medications currently showing some positive results in treating MS. Also, Cytoxan...the chemo drug he mentioned I could try after finishing the Novantrone is a standard therapy for HCC. So, even though the appointment was not great news, at least I know I am in good hands! As a matter of fact....my oncologist even called me this morning to see how I was doing, if there was anything I needed, and to make sure that I was aware they called me in a RX for anti-nausea meds for after my chemo.

Well, I need to get going for now. He has me scheduled for a CT of my abdominal area today to check for any problems in the liver and spread of the lymphoma. The appointment is not until 1:20 but I have to start drinking a horrible chalky (tried to make it taste like berry) contrast drink. One now and another a 1/2 hour before the scan. Wish me luck!

I hope you are all doing well. Please take care of yourself.
Have a good Thursday!

Jaime (this is for you Matt!)

Today I go in to see the Oncologist. I am sure everything will go fine. My appointment is at 2:45 but I have to be there at 1:45 because they want to do some labwork before and of course I have paperwork to fill out. Hopefully this means that I can get in to have my first Novantrone tomorrow.....maybe Friday. I would much prefer to get it done before the weekend rather than wait until the first of the week. This way I have the weekend to rest.

I am sorry that I have not been very good about keeping up my blog lately. I have been so tired lately and just can't seem to get any energy. It doesn't seem to matter how much sleep, how much I relax, rest...whatever, I am just so tired....physically exhausted. My fatigue just seems to be increasing. I am doing my best to stay positive that this Novantrone will help out! :) Speaking of the Novantrone it is about time for me to go get ready for my appointment.

I hope you are all doing well. Take care of yourselves. I will do my best to get around to each of your blogs to catch up real soon.

Jaime