Okay, so this title is a little too deep, but it really goes with the song I wanted. I know I have really been on my soap box a bit too much lately, so I apologize for that. I guess it just seems that sometimes you need to speak up about things when the system is not what it needs to be.

As I start to think over the events of this week and how things have unfolded, it is amazing to me. I have somehow responded very much as if I was once again told I have MS. That is just stupid! I know that I have not been feeling well, and I have been depressed because of a variety of things (meds, not feeling well, tired, etc.), but I am stronger than that. I HAVE to be. I have to pull myself up from all of this and find a way to make this work. This is the conclusion that I think I ultimately came to by the end of everything yesterday, and so I think I have got it.

At the beginning of the week, when all of this started to really fall apart, I was like someone going through the 5 stages of grief. I really showed the signs of denial. This can't be happening, there must be a mistake. Who are we kidding? I am still somewhat in denial. I can't believe this is how the system is set up. I believe we are meant to have better. I KNOW we deserve a better system. Anyway, I was pretty sure that there HAD to be some other programs out there, even though I was getting the run around. I was right, I kept digging and did not take no for an answer, and found out some information (I will get into that in a minute).

The run around, that led me to the next stage. Anger. I don't think I really ever hit the why me part as I have never really been one to ask that question. More than anything it just made me mad. I really got angry, had some serious hate in me, an anger I have not had in me in years. I did not think I had it in me to have that kind of feeling, actually. It scared me to think I could actually get that angry, almost hateful. I have worked very hard to be the kind of person who does not hate, and to think I could get that upset, then brought on guilt. I don't think that is one of the stages though.

Depression is actually the 3rd stage, and well I have been dealing with that all week. I really do think that the Avonex has a lot to do with that. I have never really been a depressed person and the times I have been sad or whatever have NEVER been like I have been this week. I had uncontrollable crying and everything. It was crazy! I am sure that it will come and go too, just like all the other symptoms do with this illness.

Acceptance is the next stage. I am okay here. I am accepting that the government has these laws and regulations, and I am okay with that. I don't agree with them necessarily, and as I stated in my post from last night, I think these things should be based on factors like what the disability is, # of people in the household, cost of living in the area. Things like that. I don't think it would be fair for me to get the same SSDI as someone living in New York City. I know for sure it cost A LOT more to live there. They need more to live on and support themselves and their families. That type of thing. I am accepting what I can control though. That is what I can do. I have made many calls and that leads me to the last stage.

Stage 5: Getting Help. Well, the only help I need here is a medical insurance policy. But, I think I have that figured out. After about a dozen people tossing me around through different phone tree systems and telling me I had no other options just pay the money and take that plan, I told them no. There had to be some program for working people, low-income people who don't have SSI, SSDI, or other insurances, what do they do? That is where they then were like, well, um, there is this other program but you don't want to do that, it might not be as good of coverage.

Well, I used to work in medicine. So, I got the information, I have contacted the company and am getting all the benefit stuff sent to me so I can compare coverage. It looks as if for a small premium each month (which is a lot less than $3000/year) I can get a basic plan that will cover all of my medical appointments with just a $15 copay, including my specialist. All but one of my doctors are providers, and they will cover hospitals, chemo, home health, etc. The coverage turns out is not that much different that what I have now. The main difference is I have a pay a little more and there is no coverage for durable medical equipment. There is a deductible of $150. Plus, If anything major happens, it turns out and with the SSDI I will always have the spenddown available, so if I ever end up spending $3000 out of my own pocket they will kick in as a secondary to my insurance that I have purchased. They don't cover the meds real well either, but there are ways to go about that too.

See I knew there were things that could be done. It just upset me for them to tell me there was nothing I could do. That was probably their first mistake. I didn't do well when an insurance company would not cover things for my patients when I worked in medicine and I always went out of my way to make things happen for them, and was KNOWN to get things done. This was just the fuel I needed I guess.

So, today ended up being a good productive day for me. I have been feeling a bit better. Still very tired, maybe that is because I am not sleeping well. I think I have been so upset and let this get the best of me. I can't let that happen again. The stress is not good. Tomorrow should be a quiet day. I am going to Seattle to see my GI doctor and my Nathan comes home. He is so cute he sent me a letter from camp. He caught a fish while camping, and was saying how it is bigger than the one his dad caught. :) He is having so much fun! He will be home tomorrow. Yeah! Well, I hope you are all doing well. Please take care of yourselves and have a good night. Happy Friday tomorrow! Remember to SMILE!

What a day today has been. I have been on this emotional roller coaster lately in regards to how I am feeling both from a medical and mental standpoint. I have been under a lot of stress and it seems that I just can't handle stress like I used to. What is that all about anyway? A couple years ago it seemed like I did better when I was under stress. That was my coping skill. Now I just fall apart.

It seems as if I should not have as much stress now that I am not working. That should have taken away the bulk of my stress. It has helped, but it seems that as aspects of my health has gotten better (my asthma, allergies), other aspects have progressed (my MS). I am sure it is the natural progression of the illness and as it is unpredictable, it is likely that just as it has progressed, next week I may feel better and not have another relapse for a year (I can always hope). You just never know. I am sure all of the stressors lately along with starting the new medications and the most current relapse that I have been fighting is only making it more difficult for me to get to feeling better. This is the constant battle.

Speaking of current meds. My PCP freaked me out the way he talked about how interferons have "major side effects". He has used them quite a bit to treat hep c. I looked into it. The interferons for hep c are alpha and the ones for MS are beta. The side effects are a bit different. Some are the same. One that I am a bit concerned about is the depression. I am noticing that I have been depressed a lot lately. I am not even a depressed person. The Avonex mentions that depression can be a side effect and I am noticing that each day I seem to be more and more depressed. I seem to cry for even stupid little things. Then I feel stupid about it and that makes me cry. It is like this big cycle. I hate that. I think this medicine is screwing me up. All of this stuff going on stresses me out so much that I couldn't help it and spent most of the morning crying in between phone calls while I was looking into ways to figure out what my solutions are. There are some things that can be done. There are a couple of low-income health insurance plans I may be able to get on to, it won't have real good coverage, but it would pay for my doctor's appointments and buy me a couple years until the Medicare kicked in, and I could qualify for a Medicare supplemental insurance plan. Then I could apply for a prescription assistance plan for my medications. I have been very busy making phone calls today!

One quick thing from the soap box: This really upsets me. I had one state agency tell me today that basically people with disabilities are not given any more respect than those who live off welfare, and the ones who are SSDI have it even harder because they are penalized for working. The reason I would have the pay the roughly $3000/year in order to get the medical is because how it is explained to me is that people with disabilities who want medical coverage are only allowed to have a certain income (varies by state = SSI amount) If your SSDI is more than that amount then for you to get medical you have to pay that amount in medical bills before the state will help you with medical bills. So, I get the full SSDI amount allowed in my state, which is ~$256 more than the full SSI amount allowed in my state, therefore I would have to have that amount in medical bills (or spenddown so my income is actually the SSI income) before I qualify for medical. Therefore you are penalized for working. No one should be penalized for working or disabled. The policies should be the same, based on disability, family size, cost of living in your area, and need (i.e. medical bills). This is what should determine what your benefits are in my opinion. I am glad that the benefits are there and available and appreciate what the system was designed for. I just think that somewhere, somehow things got screwed up.

I include all of this because I was told by my doctors and the representatives at the state who helped me when I filled out my application for SSI/SSDI that it was in my best interest to apply for SSI/SSDI because I was no longer able to work. My health is fragile and because of the major health issues that I have (MS, history of cancer, GI, Asthma, etc.) that this is the only way I could guarantee to have medical insurance coverage for me and my son for the rest of my life. I was told that I was no longer insurable through private health insurance companies and unless I got a job with a big company which offered group insurance, which would be difficult to do with the MS because of how unpredictable it is and that I could not guarantee a company that I would be a steady employee, I would never have another way to get medical insurance. I am on about 20 meds each day, I see 4 specialist a month, am being monitored for multiple medical issues, and most importantly have to keep it all together because I am first and foremost a mom.

Now, I am in a position where I may have to go without medical insurance for up to two years. I am not sure that I would have had it any different if I did not go through this process, and I would NOT encourage anyone not to apply. I DO encourage you NOT to get discouraged as I did if you are let down when you finally get your SSDI approval only to find out that you may have to go for two years with little to no medical insurance. I would hate for someone to go through the stress and misconception that I did, that I would have my worries taken care of, FINALLY. Just please be aware that when you get that approval that may not mean things will finally start to get better, it just may be the first step. That is how I am having to look at it. As the first step on a very long road ahead. But, please keep looking forward, somehow, someway, it HAS to get better.

I have decided after spending most of the morning upset, sad, depressed, and crying. Then the afternoon angry, mad, and asking myself if I have made the biggest mistake of my life by even doing all of this. I thought to myself maybe I should have ignored this illness and just went on as if it did not exist, but then there is reality, how long could that really have lasted? I wasted a good part of my day today, for what? A bad day. I guess I needed that. I have really had a lot of those feelings lately. I guess we all have those feelings sometimes. But, I am tired of those feelings. I hate having those feelings. I just don't know how to make those feelings go away sometimes. So, I try and tell myself that I am not going to think that way. It is not always that easy, but that is what I am going to try and do. I have decided that each morning I am going to try my hardest to try to smile and make the best out of each day. Dave reminded me today that I needed to smile. :) (Thanks!) Sometimes it is just that simple.

My ex-husband Justin is coming into town tomorrow. He is being a sweetheart (yes, we have an interesting relationship!) and driving me to Seattle on Friday. I have an appointment with my GI doctor. Nathan will be home on Friday from camp too! I am so happy about that. I also decided I needed to get out of the house, so I signed the three of us up to volunteer at the MS walk this weekend. I wanted to form a team to walk (not sure I could walk it, but I would try to make it as far as I could) but I was not sure if my dad would be out of the hospital or what would be going on. He is doing great though. He had a follow-up yesterday and the toe is healing just fine. Well, I hope you are all doing well. Please take care and Smile. :)

Just as I was about to close this out, my mom called. She told me that I need to always fight this and think of it as if it was some insurance denying one of the kids in the nephrology clinic I used to work in something they needed. I would have fought for them, so I need to fight for me. I hope you all have a good night.

Music choice:

I am so frustrated! I have not been feeling well again. That stupid twitch under my left eye is back, just when I thought I was rid of it, it came back yesterday morning. I woke up with a headache this morning, and now I am having problems with my vision. My PCP says that the twitch could be because my potassium is low so he started me on some pills for that. I have been fighting this relapse for a month now. I am so tired!

I went in for my follow-up appointment yesterday with my primary care and he does not think there is anything else going on (i.e. RA, etc.) He said that the interferon from the Avonex could be making me feel this way and that it could be making my relapse linger. He warned me to be careful that there can be many side effects from interferons. By time I left his office I almost wanted to question if it was worth it to take the medication, if it is safe to take. I do think it would be wise to discuss it further with my neurologist at my next appointment.

Speaking of that, I am not sure what will happen now. I spoke with the state today and was told that I had been approved on the CNP medical program which means that I would get medical for one year based on medical need. Then when I got home tonight from visiting my parents, I had a message on my voicemail stating that she made a mistake and that she gave me the wrong information, that I qualify for the spenddown program, which means, I qualify for a different program where every 6 months I have to pay for $1536 in medical bills before I can get medical insurance. My question is how am I supposed to afford to do that off SSDI, pay my bills, support my son, purchase my medicines, buy food, and anything else that may come up? Not to mention, I am trying to get my health back. I hate to be negative and I know that every other person who has a disability and is faced with having to go on SSDI goes through this, but I don't want this life. I want to be healthy, I want to work again. I don't want to live off SSDI for the rest of my life. I have to believe I can regain enough of my health and enough of my life to live a decent life. Because this is not cutting it. This is not the future that I want for me or my son.

I am just not sure how I am going to figure all of this out. I worry that I will have to go without medication or I will have to quit going to the doctor. The problem is that if I quit taking a medication then I get more sick, if I don't go to the doctor then my labs don't get done, I don't get treated, etc. It is all a big cycle. I am sure that this is the same cycle that every person with a disability must go through. As soon as I figure out the solution I will let you all know, so that it is not so difficult for everyone else. What a pain! It seems to me that it would be common sense. You would not be approved on SSDI if you were not disabled. Disabled = the need for medical insurance. SSDI = fixed income. This means there should be some kind of program in place to assist people who are on SSDI to get their medical needs met. Common sense. We would not be on SSDI unless there was a need to be on SSDI.

Okay, so enough of the complaining about the medical insurance stuff. That is frustrating and depressing. I will get more information soon enough in the mail and once I do I will go talk to someone about it. On a different note. My son is away this week. The whole 5th grade is at camp this week. I miss him like crazy. My house is so quiet with him gone. I am sure he is having so much fun. I am really glad that he got to go. It is good for him to get away and be a kid for once. He gets to be in the mountains where he can fish and hike. He gets to be a boy and not think about my being sick. I hope he is having so much fun. I am sure he is.

It's been a while since I have posted anything, just over a week in fact. There has been a lot going on with my family this week.

Last weekend my father ended up in the hospital. He is diabetic and developed an ulcer on his foot. It spread quick, and after some IV medication he had part of his toe removed Wednesday morning. He is doing great now. He is back at home and doing IV home health until May 7th. More than anything, I think he is just happy to be back at home.

Tuesday I had my follow-up appointment in Seattle with my neurologist. Usually my father would take me to these appointments, but seeing how he was in the hospital, my sister went with me. It was a very long day as we went over and back in one day (~3 1/2 hours each way). The appointment went well. It was long. I love my doctor, she did the typical exam and stuff. I have been in this relapse that has been lingering for a while now and so she increased my Topamax and added a couple new meds. One for memory and another for fatigue/depression. I am up to 20 meds now. That is frustrating, but I understand why it is necessary (not all are for MS, I have other medical problems, asthma, etc). Anyway, I go back to see her in one month for follow-up.

The rest of the week I have been focusing on helping my family with my father and dealing with insurance issues. Before I got sick I worked in the medical field and dealt with insurance companies quite regularly. With my dad going on IV home health for an extended period of time we wanted to make sure he was going to be covered. The last thing they needed was to get stuck with the bill.

Also, I got my social security approval this week. So, I am happy about that, but nervous at the same time. I am really happy because now I will have a better way to support my son since I have not been able to work in almost a year, but it makes me nervous about what this will do to my insurance coverage. So, I have been trying to figure out what kind of coverage I am eligible for. I have been told that once you are approved for SSDI, you are not eligible for Medicare for 2 years, but you may be eligible for Medicaid, but at the same time you may not be because the amount of SSDI you get may disqualify you, so that is the catch 22 of it all. There is a spenddown program where you have a deductible once every 6 months and then Medicaid kicks in, but the deductible can be anything from $5-$2000 or more every 6 months. I will find out more next week. I guess you just do what you have to. Something is better than nothing, and maybe I will be lucky enough to be closer to the $5 range than the $2000 range. I am unsure how they calculate it, but it all depends on your income. The way I look at it, is the Avonex alone is like $1500 a month, so it would not take long to meet that $2000 6-month deductible, so if Medicaid picks up everything else for the rest of the 6 months that would definitely help me out. And, as much as I HATE the idea of having to live off the government (that has been a very hard thing for me) because I have always worked, this is what these programs ARE for. It will be interesting to see how it all works out.

I find it interesting that stress is one of the WORST things you can have with this illness, but then you can't help but to have stress with this illness because it is so unpredictable, you must learn to change the way you live your life, and it can be done, but it is an adjustment (which is a stress factor) and limits our availability to resources that are necessary to live productive lives (without a serious fight, which creates more stress, like the need for health insurance). This is what it is like for those of us with an incurable illness, not just MS. This is why we need a cure.

Speaking of that. I got my MS Music Fest 2005 CD in the mail today. It was something put on by the Montel Williams MS Foundation last year. They are going to do another one this year. I will post a link for the dates when I know what they are. My only complaint. I listed Miss Jaime Hagarty on my contribution to the foundation and it came to Mr. Hello, pay attention. That is okay though, it is still for a good cause that will help many people, including me, even if they can't read. Maybe the person reading the email was having eye problems that day. I have blurred vision at times. :)

Well, I hope you are all doing well. Take care.

P.S. I just went on and was reading up on other bloggers. I saw that Camille is walking this year for the MS walk. If you are able, please go and support Camille. She is trying raise money and awareness for the National MS Society in her area. You can either click on the link to the right or click on the her walk site at https://www.nationalmssociety.org//njm/personal/default.asp?pa=51344179&pd=NJM0EWLK20060423SHO

Happy St. Patty's Day! I hope you are each touched with a little bit of the Luck of the Irish today.

It is a bit of a busy day for me. My son did not have school today. He is getting ready to head off to 5th grade camp at the end of the month. That should be a lot of fun for him. A whole week up in the mountains, with his teachers and the other 5th grade students. They get to learn all about the outdoors. He is especially looking forward to the fishing classes, learning to shoot a bow & arrow and a BB gun. All that boy stuff. He should have a blast. We have to finish getting him packed. The school needs us to have all the luggage to them next week so that they can get it up to the campsite before the kids leave. Then there is all of the other fun stuff to do, regular housework, laundry, etc. I usually do my Avonex on Thursdays, but I did not get everything done yesterday, so I will try and get everything finished up tonight and take it tonight. I know I am new to these injections, but considering when I was on the steroids my neurologist had me wait to take the Avonex, I don't think there is a problem if you put it off by a day. Anyone know for sure?

For the most part today has been a good day. I have had a bit of a headache, and tired as always. That just never really goes away though. I have learned to just live with that. It is not bad enough right now that I can't get some things done, so I am good. There seems to be something going around though. I have been in some kind of funk lately though. I have been trying so hard to be positive, and sometimes that is just difficult to do. Some days the more I try to be optimistic the more I want to scream or cry. What is that about?

Anyone else having issues with blogger? They have been doing maintenance or something on sites with a pacific time zone or something and it is so frustrating when you cannot access it. Not just when you can't update it, but you can't access it at all. I understand just how frustrated Amanda must have been the other night. I was there last night. What a pain. I hope they have fixed whatever it was.

Well, I hope that all of you are doing well. There is a lot of illness going around so please get some sleep and take care of yourselves. Have a good weekend! Do something for yourself!

Hey everyone. Dave, my friend over in the UK, is trying to raise money for the MS Soceity in the UK. In May he will participate in a 10,000 ft. tandem skydive to raise awareness and money to support the MS Society. This charity is the UK's largest organization dedicated to supporting the 85,000 people and their families who have been affected by MS in the UK. Any advances in medicine in UK is surely to help us all. Please do what you can to help. This is the link to Dave's jump page. It is a secure page through justgiving.com. Thank you.
http://www.justgiving.com/theeventualjump

*Just a tip* The donations are done in the UK, so if you are donating in american $ there is an exchange rate. An example is 20 UK = 35.96 American. Every bit helps, he appreciates whatever you can do. Thanks again.

Spring MUST be in the air or something. I woke up this morning with itchy, red eyes. Allergies. That wonderful thing that happens this time of year. Actually I love this time of year. It is when you start to come out of the winter funk that you can sometimes get into. Don't get me wrong, I love the snow. I think it is beautiful. I also think it looks best up in the mountains. I lived in Salt Lake City for 6 years and this is the time of year when you go outside in the morning and it is so beautiful. The mountains still have snow on them, but the sky is blue, it is sunny, and it is finally starting to warm up a bit. That is a great feeling! It makes you want to go out and play.

A few new things. I have updated my blog a bit. If you will notice off to the right. I made some formatting changes. I added a section of links for some other MS Bloggers to go check them out. They also deal with this illness each day. MS is one of those illness where each person has a different experience. Although two people may experience the same symptoms, how severe they have those symptoms, for how long they have them, etc. will vary. No two MS patients are the same or have the same story. You may read my experience or the experience of someone else and it may sound similar, and it may be just that similar, but it is not the same. That is part of what is so difficult about this illness. There is not a textbook answer as to what will happen to us, what to expect. No one knows, no one can predict what will happen. Each day is a different day. Just as I hope to inspire people through my blog, I feel it is important that people are aware that there is a whole network of us here who are going through the same thing. You are NOT alone! Also, I have added a guest book. I would encourage you to please go and sign it. I would like to know who is coming and reading the blog and would like to contact you to say thanks, see if there is anything I can do to help you, volunteer if you are with an organization, etc. Please leave me your comments on anything and everything from you like what I have to say to formatting issues to I need help, whatever. Any suggestions you have would also be appreciated. I would love to hear from YOU! Also, I have split up my links. This way there is an easy section to access other bloggers, useful MS links, and then more information on the current treatments available.

Today is my 4th Avonex injection. So, I should be down for the next couple of days. Usually I am sick as can be for about two days once I do my injection. But, what is the alternative. Not take the injection? What does that say to my 11 year old son. So, I take the injection and for two days am pretty much in pain, in bed. This is where blockbuster video has come to know me well. I am a single mom, and I don't like my son to see a lot of what happens. Of course, I can't hide everything from him, and he is TOO smart so he knows everything that goes on. He is so brave about it all. We usually will rent movies and hang out in my room where I can lie in bed and he can hang out with me and watch movies. Something I found that helps me with the pain. Well, I took extra advil last time and I am not sure that I am supposed to do that. It helped a little, but that probably has problems of its own. For me my WHOLE body aches. Every muscle and bone. It is hard to explain the kind of pain. I am just not comfortable sitting in a chair, on the couch, in bed, whatever. But, I decided to buy one of those memory foam mattress pads for my bed. Now, I have a California King size bed and those are really expensive and I was not sure it would work, so I only bought a twin size, so it only fits half the bed, but it does help. It does not take the pain away. That is from the medicine and the MS. But, it helps make me a little more comfortable while lying in bed for those two days and also when I sleep at night. Just a tip for anyone having a hard time with that kind of thing. Well, I hope that you are all doing well. This week has been a little better for me. I have been VERY tired for some reason. I am sure it is just the fatigue that comes along with having MS, anemia, and a vitamin b-12 deficiency. Next week I head back to Seattle to see my neurologist, so hopefully she can shed some light on what has been happening. By the way, Amanda is not doing well now, so please keep her in your thoughts and prayers. Get well soon! I hope today was a better day! For the rest of you keep smiling. :) Take care.

Here is an example of why every person who reads this needs to sign the petition for stem cell research to continue in this country. Please take a minute to read Jennifer Molson's story. Visit Kim's blog. She has a lot of great information posted. http://www.cbc.ca/story/science/national/2006/03/15/ms-molson060315.html?ref=rss
This just gives us a little more proof that we are so close. We can not allow this research to stop. I understand that there has been some controversy regarding stem cell research and that there are questions as to whether it is ethically correct. I believe that there is a way to find a balance. I believe the government can find a way to set boundaries so that the stem cells are donated appropriately. There is some belief that stem cells found from liposuction is as beneficial. Let's do more research into that. That would solve the problem. Hello, this country is very overweight. I am not sure that encouraging everyone to go out and get liposuction is the best idea, but I AM sure that there will not be as many ethical concerns if the government sets regulations allowing stems cells to be used ONLY if donated from a live birth, still born, or liposuction. If you take abortion OUT of the equation then you don't have the ethical problems that have been previously mentioned as a concern to why this research is unable to continue in this country. This research is TOO IMPORTANT. IT CAN NOT STOP. I urge you, if you have not already, sign the petition. http://www.thepetitionsite.com/takeaction/903715533
It is not just for those of us who have MS. It may one day be the cure for many illness, neurological, cancers, who knows what else it will possibly cure. DO YOUR PART. Thank You.

URGENT! Your help is needed. This concerns each one of us touched by MS. Funding for MS research is at jeopardy. The current annual NIH budget may drop by $1 million both in the year 2007 and 2008. The NIH (National institutes of Health) is a leading researcher in MS, which WILL only slow down our advancements in research to bring us better treatments and one day (hopefully sooner than later) a cure. WE CAN NOT allow this to happen. There are things we can do. Please visit The Montel Williams MS Foundation. I urge you to take the time to read up on this information and ACT FAST! There is not time to wait.

FIRST: VISIT Montel Williams MS Foundation for more information. You can access the information by clicking this link: http://www.montelms.org/NewsEvents

NEXT: Send an Action Alert Email to your legislators. Please log onto http://www.house.gov/ to identify your legislators and to access their email addresses and/or phone numbers. Download the appropriate text below.
Send an Action Alert Email to the House of Representatives.To download text, click here.
Send an Action Alert Email to The Senate.To download text, click here.

THEN, Call your legislators using the Action Alert phone script below.
Call your legislators using the Action Alert phone script.To download the script, click here.
Call The Senate using the Action Alert phone script.To download the script, click here.

FINALLY, Email the Montel Williams MS Foundation to let them know that you participated at info@montelms.org, and type in the subject line: "EMAIL ALERT DONE" OR "TELEPHONE ALERTCALL DONE"

I can not stress enough how important this is. This is OUR lives people. WE MUST FIGHT FOR THIS! I ask you to do both. Send the emails and make the phone calls. The more the better. Lets show them just how serious we are. When they realize we are NOT going away, then things will get done. There is power in numbers. If you do nothing, you will have no one but yourself to blame. DO YOUR PART! Thank you.

This week is MS Awareness Week. The National MS Society is hosting a variety of events each day this week.

Each day at 10 a.m. Eastern Time (7 a.m. Pacific) there will be a webcast with various topics from treatments, to daily living, to kids with MS. Each topic will be presented by a different physician.

Today is the start of a new website. FaceofMS.org This website has been created through the collaboration of the National MS Society. It has been designed to raise awareness. It is a place where people with MS can go on-line to share their stories and hear about the stories of others. It is also a place where people who know little about the disease can go to learn about the disease from those who know about it first hand, those who have been directly touched by it. I would encourage each person who reads this to take a minute out of your day to go check out this website and that of the National MS Society. I have links provided to both sites off to the side. Make a donation if you are able. Do some good. If you have been touched by MS share your story. EVERY VOICE MATTERS. EVERY STORY COUNTS.

Tuesday is MS Day of HOPE. Speak. There is power in numbers! Participate in a special MS Awareness action alert fighting for increased funding from NIH for MS research. Send an e-mail or make a free call to your legislators. We need YOU to speak out about an important issue impacting people with MS. Show Your Support. Wear MS bands of HOPE or ribbons of HOPE. Visit Goodsearch.com The National MS Society is the featured "charity of the day". Attention New Yorkers: The Empire State Building will be lit Red today in honor of MS Day of HOPE.

Wednesday. Hear stories by logging on the FaceofMS.org or checking out other blogs. Keep in touch with others who have MS. Contact your local National MS Society chapter. Log on and participate in the webcast.

Thursday. Share your experiences. Leave me a message. If you share your story with me I will post it on my site. Or, submit your story at FaceofMS.org. Join an online support group, go to a local support group. Talk to a friend or family member. Put a link to these websites on your blog.

Friday. Get involved. Join the National MS Society. Make a donation in honor or memory of a friend or loved one. Volunteer at a local chapter or other related organization. Give a gift of stock or securities. Attend an event. Get corporate sponsorship or workplace giving. Share the care with Avon. Sell on ebay and donate a % to the National MS Society. Join other organizations like Youth Against MS and Women Against MS. Participate in the MS walk, bike ride, or run. Do you like music? Who doesn't? Go to montelms.org and for as little as a $15 donation to the Montel Williams MS Foundation you can receive a gift of the 2005 MS Music Fest concert CD. Every bit helps. Do your part!

No matter where we happen to be in our lives currently, we each have the ability to do some good. I believe that we can make a difference. It is up to us to get our stories out. We are the ones who live with this every day. It is our responsibility to help others understand. It is through our helping others that we in turn help ourselves. This is how we become better people.

This link is for a petition to allow stem cell research to continue. I have added my name as I believe this research is the key to finding relief for those of us who have MS, but not only for us, also for others. If you agree with this research please consider adding your name.
http://www.thepetitionsite.com/takeaction/903715533

Finally, I am starting to feel a bit better. I had my 3rd Avonex injection on Friday. Those injections make me hurt all over. Every bone and muscle in my body hurts, to the very core. It is unlike any pain I can explain. The fevers and chills were not there this time. I am not sure if it is because I took extra advil this time. The doctor said I could take a couple advil about 2 hours before the injection. So, I did that, and then took a couple more with the injection. Now, I am not sure that I was supposed to do that, but I did. The first 2 injections were horrible. I am not sure that I want to do that every week. I am not sure that this pain each week is worth it. However, not having the chills and the fevers made it easier to tolerate.

I am still tired and weak, but I am feeling more energized emotionally (thanks Dave!) I had a great conversation with Dave today and something occurred to me. My attitude lately has really sucked! I am not sure if the depression part of MS has taken a hold of me or what, but this is not who I am. I have always been an optimistic person. What the heck! The 1st time I got sick I kicked into this attitude of life is worth living and I have to live it. I started to travel, even if it was just spontaneous weekend trips, made a list of things I wanted to do and started to do them. I went out more, had fun, lived life. With this illness I have been like a snail. I have gone into a shell. I think it is time to get over that already. It seems like I have lost touch with everything that I loved and what I wanted to do with my life. This illness should not stop me from living. I can't let it. That is what I realized. That is what I have been doing. I can't allow that to happen. I know that I can't necessarily do things the same way, but I can still do them. I can't just sit around and wait for a cure to fall into my lap. I can't sit around and wait for someone to hand me all of the answers. No one creates my happiness. I do. If I want good things to happen for me, I have to create the circumstances in which they will happen.

It has been 3 weeks or longer since the last time I felt well. When I say well I mean the ability to get up in the morning and function to the level that I can maintain my home, visit my family, go to the store. You know, the things we need to do to live each day.

Last month, I went to Seattle to see a couple of my doctors. During that trip I started to not feel well, and I have not felt well since. At first I thought I was just tired from all the traveling. So I gave it a couple of days and when I did not get better I figured maybe it was because of the fact I had a procedure in Seattle. I told myself maybe the sedation was lingering for some reason. After about 4 days I called the doctor who ordered a CBC, CMP, and UA. They determined that there was not an infection from the procedure and I was experiencing a flare-up of my MS.

The following week my neurologist ordered a 3-day course of IV methylprednislone. This is commonly used to treat MS relapses. This medicine really is supposed to work, but did nothing for me. At least it has not so far. This is why I am so frustrated. It has been a week since my treatments ended and I am still not better. I called my neurologist and she said that if this was from the MS the steroids should have relieved the symptoms. She sent me to the ER for a work up and they did a battery of tests only to put it back on the fact that this is MS. Sometimes I feel like a Human Push Pin. Or, as if I am going crazy. As if this is all a really bad dream and I just need to wake up.

I still do not feel good, and no one can seem to make a determination. I am so tired that I can barely function. The morning is not quite as bad as later in the day. I have this twitch under my left eye that has been there for at least 3 weeks. It does not really bother me, but you can see it if you look at my face. The pain and numbness has increased. Especially in my feet and legs. There is almost this feeling like I am walking on nails. I don't know how else to explain it. It comes and goes, but when it hits, it is so painful. I have had this strange taste in my mouth, dizzy spells, stabbing pains throughout the body, blurred vision comes and goes (even with my glasses on). The worse for me is the confusion. I get these spells where I can't remember things, even in mid-sentence. I am unable to form my thoughts, and things are just so foggy, confusing. It all comes in waves. None is at once, sometimes it is as my whole body is shutting down. It is difficult to explain.

I read not to long ago a woman who taught seminars to families who have loved ones with MS. She would put them in a room for an hour. She would tie their legs and arms with rope. Their hands and fingers with rubberbands. Then she would give them tasks like sewing a button and walking up stairs to do. She would have them do this just for an hour as an example of how we live each day. I am not sure that is really a good example. I do have a lot of physical problems from day to day, but there are so many aids. Walkers, wheelchairs. For me this relapse has been so scary because of the cognitive effects it has had on me. As much as I hate the idea of one day not having control over my body, that is not WHO I am. But to loose control of my mind. That is a whole other thing.

As I begin to write, I find it only appropriate to first start with who I am and why I am here. My name is Jaime. I am 29 years old. Here is where you would expect to hear something along the lines of two years ago my life was changed when I was diagnosed with MS. But, actually I have always had some struggle with my health. The reality is that MS is different.

Growing up it was asthma. Not bad enough to stop me from dancing or playing softball, but it was there. Then there was my brush with endometriosis and early stages of ovarian problems. That brought a lot of pain, and I never thought I could ever be more sick than I was when getting those injections. Finally, after the hysterectomy I figured I would have the life I always dreamed of.

I am a single mom, and so up to this point I had always worked so hard. I figured life is too short. I quit my job in the medical field and went back to school full time. I decided to go for a Business degree so that I could afford the flexibility to work really hard to make a good living while also maintaining the availability to be here for my son. It was during my time as a student that I was diagnosed with MS. I will never forget the day I was diagnosed. It was Friday, February 13, 2004. I am sure it is in part because of the news that I have MS, in part relief that someone had finally put a name to what was going on with me, and in part because it was Friday the 13th. What an experience this has been.

In all of my years of working and being around the medical field, this is the one area I knew very little about. Fortunately, I felt I had a lot of good resources. The doctors were optimistic. Get on a treatment early they would say. This is your best bet of reducing your number of relapses. The problem is my body very rarely seems to do anything by the book. And, of the current medications available, 3 have possible liver interactions, which make them not good choices for me. The medication used to treat my ovaries did damage to my liver, therefore, I am now at risk of again having liver problems. Once an organ is damaged, even if it is repaired, it is more susceptible to injury again. So, I started on Copaxone. Unfortunately, my body did not respond well to the Copaxone. Not to say that it will not work for others, so if you happen to read this and have not started a therapy, don't count it out! The symptoms came and went over the first year. Then the second year they have really hit hard.

In the early part of 2005, that is when I really started to notice a major change. All of a sudden, my memory was starting to be effected as well. No longer were the physical parts of the disease the only areas I had problems with. I now had some cognitive area problems. If it was not for the wonderful professors and staff at the college, along with a great group of friends, I am not sure that I would have ever made it through my last semester of school. Thanks guys! By summer of 2005 my doctors all pushed for me to move to an area where I could have a better support system. That is when things really took a turn. I fell on my graduation day, then again on the 4th of July.

In August we moved to Washigton State to be closer to family. I have not been able to work since. What an adjustment it has been. I have had to learn all over again how to cope with things. It turns out all these years my best coping skill was to throw myself into work. Keeping myself so busy was a way to not deal with all that was going on. This disease forces you to face it head on. A first for me! And, seeing how I am a classic type A personality, control freak, this has been one heck of a challenge.

Now that we have been here for 7 months it is not so bad. Days like today, however make me miss the big city. I have not been doing really well and my neurologist is located in Seattle (4 hour drive). I was to see her tomorrow, only a huge snow storm hit and the passes are now closed so I have had to reschedule for the 21st. This is when living in a big city like Salt Lake and having the doctors close is a nice resource. I do not miss the cold weather or the traffic, however. Anyway, I have spoken to my neurologists office and they will advise me on what they would like me to do in the meantime.

This is the beginning of a journal of HOPE. A log of my thoughts, feelings, hopes, prayers. My wishes that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I know there are many great people out there who are working very hard day after day to find an end to this and many other neurological diseases. To all of you, I thank you.