This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish 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 HOPE this will help and inspire not only myself but others.
 
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It All Sucks.....my motto lately.....things are looking up though :)

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!

11 comments:

mdmhvonpa said...

Suckage seems to be going around ... sorry you got some on ya.

Heather said...

Sorry to hear you have been having some symptom issues, and very sorry to hear about your son's health issues. I hope you are able to take care of yourself and him--I am sure it's hard to have someone else to watch out for, too.

I think Tysabri would scare me too, and I don't have a history of cancer or anything. Good luck as you discern the possibilities!

matt said...

glad you're back!

someone i know is having the same weight problems with depression meds as your son is. he's not really losing any weight, but he's having to fricken eat like 2 or 3 doughnuts for breakfast every day and a whole bunch of shakes and everything. but it's all working out.

and it turns out that it actually was the 150 mile bike ride that i heard about. people have been training for months lol. i'm not gonna be able to do that. but the next time we have a run thing over here i'll try to participate! :P

good luck with everything!

Iain Dughlais said...

11 year old on anti-depressants... that depresses ME!

We do what we have to, I guess.

Good luck with the MRI resluts, I hope it works out for you.

BTW: You're still alive! ;)

Baitulos@aol.com said...

Jaime,

Wow, what a couple of weeks for you...may the winds of calm blow your way soon!

Linda D. in Seattle

Linda D. said...

As we say in Seattle, "When it rains....well, it sucks!" Hang in there as best you can...

Linda D. in Seattle

Jaime said...

Thanks everyone for the warm comments and support. I am sure things will get better really soon. We all have our ups and downs...this is just part of life! :) I really appreciate all of you! I hope you are all doing well. Take care.

Jaime

Lauren said...

Hi Jamie, I'm Lauren and I've had MS for 30+ years. For 29 of those years, I was r/r, but a very bad attack in June 05, left me in a w/c. The reason I'm commenting to you and your readers is about Tysabri, which is 68% more efficious than the ABCR's, and extremely safe when used as a monotherapy (by itself with no other drug). I had one infusion of Tysabri in 2/05, and OMG, I felt better than I had in YEARS, and my disabling symptoms improved!
I support anyone's choice of therapy, I just hate to hear that people are afraid of Tysabri, or don't have all the facts. Should you or anyone wish to write me, feel free to do so at LGLBGL2003@AOL.COM. I will also be starting my own blog soon called "Living With MS". Take care now Jaime, I'm glad you are feeling better. My very best wishes to you and everyone, always. Lauren

Skip said...

Thanks for the Pearl Jam trivia. I figured the song was about adoption/not knowing his biofather.

And of course your MS. I haven't done much with blogs, so it's kind of new to me. But it's good to see how others deal with it. Tysabri looks like the best drug for it now that it's back. Just don't mix it with the interferons or other immune suppressants and PML won't be an issue. Repeat what Lauren said above. :-)

Enough rambling from someone with MS who found his biofather a few months after he died. :-( Pearl Jam rules!

Skip

Jaime said...

Lauren,
I am sorry to hear of your recent attack. It is good to hear from someone who has ACTUALLY had experience with Tysabri. For me it is still a scary thought. I completely trust my neurologist and know she would monitor me close and of course there is no way I think anyone who goes onto Tysabri would be allowed to do any of the other meds (ABCR's). For me it goes beyond that. I have had cancer three times and none of these things ran in my family. I just have not had the best of luck when it comes to my health and feel as if it would be too much of a risk. I am a single mom and so I am just not sure it would be the best thing for me. If my illness got drastically worse or the other meds were no longer working then I think maybe it would be worth the risk. For now I think I am best staying with the Avonex.

I look forward to reading your blog when you get it up and running. Please let me know and I will get you blogrolled. I hope that you are doing okay and can get that Tysabri started again. Sounds to me like this is something that will be of great benefit to you. I wish you the best.

Jaime

Jaime said...

Skip,
Thanks for stopping by. As much as I hate the idea of anyone going through what I go through (and I know there are many people who have it worse than I do) it is interesting to find out about famous people going through the same thing. I am sorry for Eddie Vedder that he did not know his father and feel bad for anyone who has to deal with this unpredictable illness. I do know that if we stick together though, we will be okay. It is through each other we can find ways to manage and fight the illness! :)

I think often times the media makes celeberites out to be "bigger than life" and so when we find out about others who are dealing with the same problems it reminds us that they are just like everyone else. They may have more money, but there are problems that go along with that too! The hope is that all people touched by this illness....famous or not, would do whatever we can to fight it...together!

If you decide to start a blog, please let me know. I will blogroll you. I hope that you are well and please keep in touch! Take care.

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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