It has been a while since I last posted anything....sorry for that! I really appreciate all of the emails and comments, you guys are great. :) Things have not been great around here....today is better, and tomorrow is a new day. I figure take things day by day, thats all we can do anyway, right?

4th of July ended up being a sad day for us. My son was hospitalized.....he is home now. I am really happy to have him home but I am not sure he is really ready to be here. Over the weekend (just before the holiday) he was acting really strange.....not himself at all. I had taken him to see the PCP the previous week because I was worried at how skinny he seemed to be. He eats really well, but seemed to be loosing weight. Not to mention whenever we would go out in the heat and get in the car he would throw up. I figured car (motion) sickness, and that is what the PCP originally thought. He has lost a lot of weight (and did not have any to loose....he's a stick). Over the last month or so.....16 lbs. This is crazy! After his behavior over the weekend they realized he was probably having a reaction to one of the medications his doctor gave him for depression. One of the possible side effects is weight loss...and with the other behaviors, they now were thinking it was causing him to have seizures. Very scary.....especially since he has been healthy (it's rare for him to even get a cold)! The doctors feel that he is doing better though, and they will monitor him closely over the next few weeks! They took him off that medication and have started him drinking protein drinks (I got him some ice cream today so he can have shakes!) three times a day. For an 11 year old that is as tall as he is (almost 5') and only weighed just over 70 lbs to begin with....this is NOT good. They did an EEG and that came back okay (done after the meds were discontinued). They wanted to make sure that he did not have an actual seizure disorder and so waited until he had d/c meds to get an accurate reading. Fortunately it appears that this was just a reaction.

Justin (my ex) was here for the week too. It is great that Nathan has him to depend on. :) He had planned to come to the area that week to visit Nate and go to Seattle with us (I had my appointment with my neurologist last Thursday). That was one really long day. Nate was in the hospital here and since I have been having so many new symptoms and not feeling well at all, they moved my appointment up to July 6th. We drove to Seattle and back in one day. It was a very long trip and I think that I pissed off my neurologist. We were a 1/2 hour late for the appointment because there was construction at the top of the pass and we were delayed. They wanted me to reschedule and I pushed to be seen.....after all, I had rented a car so Justin could drive some of the way, it is almost 4 hours each way and honestly, I have no control over the fact that there was construction. I have not been late to her before and I plan my trips so I can get there on time. I always leave so that I have time to get there.....and I do get there on time, I was not in the mood to have driven that far only to be told to go home, however! I understand they have other patients, and I was more than happy to wait. Everything turned out okay though and I was able to be seen. I love my neuro though.....she really knows her stuff and I am grateful to have her! :) I just think that was not a good day for anyone. I really hope that it was not too big of an inconvenience for her.

My visit went okay. She thought that over all I looked pretty good. I am having a lot of new symptoms....and some old ones, but she thinks this has a lot to do with the HOT weather we have been having in Washington State! She gave me strict orders to basically stay inside and out of the heat......easier said than done, unfortunately. I have been trying really hard to stay out of the heat, but I am on my own here and so sometimes I must go out.....I don't actually have anyone else to do things for me (i.e. grocery shopping, laundry, etc.) and with Nate being in the hospital I had to go visit him each day and meet with his doctors.....this was just too important! I am doing my best to keep cool however. I even applied for a cooling kit from the MSAA. :)

So, today I went in for a repeat MRI to see how I am responding to the Avonex (I have been on it almost 6 months now) . My guess is that I will probably not officially get the results until next month when I go back to see her (August 7th). She discussed the possibility of having me switch from Avonex to Tysabri. We are not sure if I will even be a candidate for this medication but if the Avonex is not doing its job and with my still having symptoms......it may be the next step. With my history of cancer, I may not be eligible for it so we will just have to see what happens. Personally, I am good with staying on Avonex. The idea of taking Tysabri scares the crap out of me! With my history (cancer x3 and now MS) I feel like I would be asking for PML......or at least I would think that makes my risk higher. I have been lucky so far to have great doctors who caught things early and I was able to get the chemo/surgery needed, but I am not so sure about that. I trust my neuro fully and know she would monitor me close, but I am still not sure it is worth the risk. I am thinking that I would rather be disabled my whole life (even if it means I get much worse) than risk developing something like PML and dying. I want to be here to raise my son!

So....some good things! I have been talking with the National MS Society in Seattle and I am taking on MS Ambassador.......also Issues Ambassador! I feel like there is a lot that needs to be done and I need to do my part. They are having a training session on July 31st and so I suspect I will be able to do more after that training (done by phone....nice!) I am looking forward to working with them to create new programs and get better ideas out there to help MS'ers have a better quality of life! I know it is important to spend money towards a cure but we need to do something to have a better quality of life NOW! Not to mention the advocacy piece. Getting the government on board is also very important. As a matter of fact I have been asked to participate in a study that will be sent out to the Insurance Commission, all insurance company CEO's and will hopefully impact how businesses and insurance companies have to cover costs for MS'ers. I am really excited to find out the results of the survey.....of course, I had a lot to say!

I got a letter in the mail the day before yesterday. MS Helping Hands (reminder to go and donate to them or any of the other charities/foundations listed to the side-->>) approved me for assistance in the amount of $1000.00, so I have now met my spend down and have insurance again! Between that and the hospital bill from the other week....the state's requirements have been met. I still don't agree with the way the system is set up and think it needs to change (for everyone who will ever have to go on SSDI)........for now I am just happy to have some coverage! I really appreciate the folks over at MS Helping Hands and think they are doing great work. I don't know what I would have done without them.....Thanks again!

I hope that you are all doing well. I have a lot of catching up to do over the next couple of days....but I promise to get around to each of you soon! Seeing how crazy things have been, and will continue to be (Nate is being followed very close and has several appointments over the next week or so) I may not be updating everyday like I normally would. Once things calm down a bit and he is back to his old self....then I will resume! For now.........enjoy some great home grown music!

FYI.......a bit of Pearl Jam trivia! Did you know that Eddie Vedder has a connection to MS? 'Alive' is based on the fact that Eddie found out that the man he believed to be his father was not. And that his real father had passed away a couple years earlier (from complications of MS). "In the original story, a teenager is being made aware of a shocking truth that leaves him plenty confused", he explained, "It was a curse -- 'I'm still alive.'" I am sorry that he had such a difficult life but I am glad he found a healthy way to deal with his issues (by giving us all some great music to listen to!) Until next time.......Take care!