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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The Day Before.....

It is the day before my appointment and let's hope this time everything goes as planned (last two have been rescheduled). I sure hope that everything went okay for my neurologist...she had surgery herself last week.

I have so much that I need to do today and so I am praying that I can sustain enough energy to get it all done. One can only hope, eh? I have been up for a couple hours now, getting some things ready for tomorrow and sending off emails. I have been communicating with Nathan's teachers through email, which personally I prefer to communicate this way as I am not always available on the phone (doctor's appointments, etc.) and with their schedules sometimes it can be difficult to get them on the phone. I feel it is important for us to all work together to help Nathan have the best year he can. He really loves his classes this year and enjoys each of his teachers....a very welcoming change from previous years (don't get me wrong, he liked some of his previous teachers but was unhappy at school).

With him dealing with some depression and anxiety I felt it was important to have something in order so that if he is having a hard day there was a plan in place for him to be able to go see the school counselor or just get away for a minute. He has done well so far but one of the things I know about my son is that he is very sensitive when it comes to how I am doing and his attitude really reflects it. When I have flares and/or my MS symptoms get worse he worries more and I don't want this to interfere with school. If he is unable to focus because of problems at home, he needs the availability to go take a time out or talk to someone. Hopefully my doctors will be able to get me on a treatment plan that will work but there are never any guarantees with this illness. I feel it would be better to have a plan in place so that he is supported no matter what!

I have had 3 flares in less than a year and the reality is that my illness is progressing. This is something that we have to deal with and at his age it is difficult to accept, heck some days it is hard for me to accept...but I have. Now I have to help him get by until he is ready to accept it. As difficult as this illness is on us...I think many times it is much more difficult for those around us, the ones who love us, help us, and take care of us....our support system. As helpless as we feel at times, I think it must kill them to not be able to "fix" it for us.

I have been on the computer for a while now and so my eyes have just about had it. I was so hoping after all of those steroids my eyes would be have been better by now. I guess it all just takes time. Over all I feel headache is minimal, I am not limping so much today (I think the spasms in my leg have finally slowed some). I almost wonder if I am just getting more used to some of the symptoms and so they are no longer as bothersome, even though they are still here and noticeable to me. I have had a new symtpom recently however that is very bothersome. I lost all feeling in my right hand and one of the times my right arm. This is not a good thing as I am right handed. Each time I would just loose feeling suddenly and then it would come back slowly over the next hour or two. Only once did I get it back in about a half-hour. I am hoping this is just a temporary thing!

Well, wish me luck tomorrow. I have lots to discuss with my neurologist and then I get to go in for the endoscopy where hopefully my GI can shed some light on all the abdominal pain. For now it is important to just try and remain postitive that there is something out there to help! I hope you are all doing well and having a great day! Take care.


personallog! said...

I really am thinking of you today as I have not seen you sign in and I miss you so much. I hope the appointment goes well for you and you get some resbite from this disease.
Love ya babe!
x said...

Here's wishing you a safe trip and positive results!

Linda D. in Seattle

Jaime said...

Thanks! The trip itself is always a beautiful drive...if only I was going for fun and not for an appointment...that would be a nice change. One of these days we are going to have to meet up...maybe have lunch. Seeing how I seem to get over there about once a month. I hope you are well. Take care of yourself.

Jaime said...

It is always wonderful to read a comment from you. I have told you many times there is not many people who can make me smile or laugh the way you do. Everything will be just fine...not to worry. I have missed talking to you as well. We will talk soon...I promise. Take care of yourself.

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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 life with MS (among other things).

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