Oh but you look so good, I heard them say, Is that me you're talking to? I thank them for the compliment, wishing I felt that way, I wonder what that phrase is really suppose to mean? I'm no Marilyn Monroe and certainly no beauty queen. I'll admit I've done fairly well, quite the actress I've become. I try not to discuss my excruciating cranial nerves ,or my legs that are often numb.

My family has witnessed days in which I can hardly bear, Days when fatigue is so consuming I don't bother to fix my hair. I'll make it to the shower, a technique to hide the pain, you can't hear me crying and my tears are swallowed by the drain. Days when I can't budge and I feel frozen in one place. Of course, these are the days you won't see my face.

I suspect when you see me out in public, I project a certain glow. My good days are seldom now, but I'm truly sick you know? I don't know how to describe the symptoms of a disease still so misunderstood. But, I still don't mind hearing, "Oh, but you look so good."

Copyright @2006 Cheryl Lynn Conway

Only 17 days left until the MS Walk. It should be a great day. I am hoping and praying for good weather as last year it rained. Actually that is an UNDERSTATEMENT.....it poured. This year I am hoping that we will have good weather. It doesn't have to be perfect, just warm enough that no one gets sick and NO RAIN!

I have really enjoyed being on the MS Walk Committee this year. It has been quite the experience. I am tired though. I am also having a lot of fun putting my team together. The last time I checked our team had raised $1300. I feel very blessed to have felt well enough to be able to be a part of this....such an important cause. I am hoping to raise a lot more money still, so if you are able I ask that you please make a donation to my team. Any amount would be appreciated. You can go to the Team MMSJ webpage and click on any of the team members names and make a donation with your credit card on that individuals site. Or, you can mail a check to the NMSS at 192 Nickerson Street, Ste 100 Seattle, WA 98109. Just make sure that you put Team MMSJ - 2007 MS Walk on the memo line so that they know you are making a donation to the walk. Also, if you choose to make a donation this way, please leave me a comment and let me know (or send me an email). I am hoping that we can earn $3000 for the MS Society.....please help us reach that goal!

Once again I thank all of you who have given a donation already, supported my team, volunteered, and/or are on my team. You guys are great!

I am starting to notice a pattern of how I respond to my Novantrone treatments. It seems that I have had a similar reaction with each treatment and so I think maybe this is just how it is going to be for me. My treatments are once every three months. It seems to take about a week or so for my body to respond to the chemo (which is normal....the first 14 days or so your immune system is weakened, then rebuilds itself). After that week or so I then immediately seem to do really well. Better than I have done in a very long time (probably since before my diagnosis....or longer). This lasts for a couple of months and then about 4 weeks before my next dose is due it seems the chemo wears off.

When this happens it hits really fast and I seem to go downhill very quick. My headaches get worse, I tend to have problems with my eyes, my mind seems to race...I feel as if I am loosing my mind in some respects. It seems that my body just crashes all of a sudden. The first time this happened, you may remember, I ended up in the hospital for a while. This time my doctor jumped right in and started me on IVSM. Steroids suck! Let's face it, but they get me through. After about a week or so of my body just flat out crashing, my needing to be on IVSM and this time oral steroids....then I start to feel a bit better. This seems to buy me some time until my next dose of Novantrone.

This time around I have a new symptom....extreme dizziness. I can't turn my head at all (not even slightly) without feeling as if I am going to fall completely over. Oh, and to look up or down...forget about it. My vocal fatigue and low-grade hearing loss continues and tomorrow I start speech therapy. Fortunately the vocal/hearing problems seem to come and go. I notice that the more overall fatigue I have the worse these symptoms also are.

So, is my MS continuing to progress despite the treatment? Maybe. What I can say is that even if I have some progression, I also recognize that I am responding (even if not for the full three months) to this medication and that is something! Especially for someone like me who responded so adversely to the other medications available. For me I feel that two good months every three is better than no good months at all. That is something to be happy about! :)

I hope all of you are doing well. Please take care of yourself!

So here it is! This is basically what our t-shirts will look like for the MS Walk this year. (I am leaning towards going with a red foot however)This is the first year that I have formed a team and I have been so pleased with how generous everyone has been. A wonderful artist, Amber, at www.madscientistgraphics.com donated her time and talent so that we could have a logo for our team! I have also just found out that a local brewery and screen printing company are willing to help pay for the cost of the t-shirts. Now we just need to reach our goal and we will be good to go! We are about 1/2 way there, so if you have not donated yet and you are able....please take just a moment and do whatever you can. Every cent helps! And for those of you who have already donated, thanks again!

Sorry for the short post. Just thought I would let you all know I am still alive and kicking. The last week or so has been a bit rocky as my MS has decided to show its ugly face once again. I think that this is just how I probably respond to the Novantrone (I have never been one to respond by the book with these meds). This is how it was after my last treatment as well. The treatments come in three month increments and I seem to do REALLY well for about two months, but then it is as if the chemo wears off. That is the phase I seem to be in now. So, I have just finished a 3-day course of IV steroids and today have started the horrid oral steroids. I do have to say though that for whatever it is worth....I would take a good 2 months or so every three months over what I have been given in the past with this illness and for that I am grateful for the Novantrone. :) I am hopeful that because this time my docs jumped right on it I will be able to maintain a decent rest of the month until my next chemo in April. Anything is better than the hospital experience last time.

I hope that all of you are doing well and please keep in touch. Take care!

I don't have a lot of time now to update all of you.....but I wanted to share with you the video that I put together for our group of MS'ers who traveled to Olympia last month.



Also, if you get a chance...my friend Danielle is just starting up a business and although her website is not quite complete, you should all go and check it out! Click here to visit Mystic Mountain Boutique!

I hope you are all doing well. Take care and I will be back soon to update and check in on you (which thanks to Mdmhvonpa's hint of Google Reader...I have been keeping up to date on all of you!)
Have a great weekend!