Monday, July 30, 2012

Adjusting to the change

Well, my Copaxone nurse came out on Friday morning and showed me how to inject copaxone.... It burned like hell but I've been through worse.

So I've been doing well with taking my shot... I've been setting an alarm on my phone so I don't forget to take it.

I did however make a "boo boo" yesterday with my shot. I went to inject, hit he button and nothing came out.. (I'm using the auto inject) well silly me forgot to take off the lid cap thing.

So I went to take it off and medicine was leaking everywhere since I had already pressed the inject button... Can we say oops!

This is definitely going to take some time to get used to. But hey, I'm surviving with it. I took a fall Thursday evening ... Clumsy me. It's taken some time to get feeling better, but I'm doing better.

I basically relaxed all weekend, thanks to my mom being here.
Because on Friday night.... Guess who ran smack dab in not the corner of a table... This girl. Double injury!

I feel better now that I got to relax and take it easy, but this heat is still getting to me. I feel bad cause the boys keep wanting to go outside and play and i just can't do it.

So I'm trying to make it fun for them being inside. I think we're going to head to the store and pick u some board games... And I think I'm gonna get them some movies too.

I feel bad that I'm "trapping" them in the house... But at least I can still function by doing so. I try and make things fun for them... since I can't be outside with them.. and I can only hope I'm doing a good job of it.

So all in all I'm not just adjusting to the change from Tysabri to Copaxone... but also the change in my spasticity medication... and this Texas heat. I hate having the feeling that I'm letting my MS keep me in doors... but then I have to sit back and think that a lot of people can't even be outside right now, not just those that have MS.

I try REALLY hard not to let MS control my life... and always be my topic of conversation, but it's hard not to talk about my MS in conversation all the time, when it's effecting me all the time.

I think that's why I'm finding it easier to talk to people who have MS and build friendships with them, rather than try and talk about it with someone who doesn't get it. My husband gets it in a sense... because he in a way has MS... since he helps me and cares for me... but then I just don't want to over load him with all of my feelings... he already does a lot for the MS community as it is... A lot more than a lot of caregivers do.

In a way I feel that with every change I have in a medication to slow progression, it's like going through the whole diagnosis phase again. Maybe third time is the charm? Let's hope so.

Well, it's hot... and it's time to watch some G-Force w/ my boys!


Saturday, July 21, 2012

Goodbye Tysabri...

Well, here is my update to my previous post...
I went to my neuro on Wednesday & we had a LONG discussion about what we were going to do.

So to get the spasticity issue solved, we decided to taper off the Baclofen & start on Tizanidine. Just waiting for the script to be filled and I will start that soon, already trying to taper off of Baclofen but not having the Tizanidine to compensate is very difficult and painful.

So he asked me what I would pick out of the approved medications we have right now to slow progression. I deliberated and eventually answered Copaxone, due to it's success rate. My neuro agreed with me & we put in the paperwork for me to start Copaxone, so just waiting on that at the moment.

I understand that I shouldn't just wait for BG12 to come out... not being protected during that time. I of course would worry about relapsing and my neuro also expressed his concern about not being protected.

So at least now, I can say that I will be taking a medication to "try" and slow the progression. I'm not trying to sound negative at all about taking a med to "try" and slow progression, but none have shown to STOP progression, that's what I'm saying.

I'm also not going to get my hopes up right now, because that seems to jinx it all lol I just sit here and believe there is a plan for me and it will all fall in to place.

Even though I haven't been diagnosed all that long (diagnosed 8/30/10) I have still done A LOT of research and stay very active in the MS community.

I'm really enjoying that there is all of this new information coming out about MS and the trials they are doing. But I'm just sitting here wondering, when the SYMPTOMS are going to be addressed. Yeah, I want MS to be cured... and for better meds to be available... but I also want something to address the damage that has already been done by MS as well.

And while I hear people say "they're getting closer to a cure"... yeah they could be, but how can you be  moving closer to a cure, when you are not even sure of the cause..?

I mean, I just don't want everyone in the MS Community to get their hopes up, like they did when CCSVI was first being brought up. I just don't want statements to be made and not followed through with. It's very upsetting, and there are some people with MS that take everything that researchers say and studies say to heart.

Well, hopefully the Copaxone will be ready for me soon, I'm in a way excited to try it out. I will keep everyone updated on the journey... Be well & STAY COOL! So hot outside! I haven't been going out there at all lol Any errands needed to be run can wait till it cools off.


Saturday, July 14, 2012

My future and MS

Well I spoke to my neuro's office and I'm going in on Wednesday (July 18th) to talk about my options since I no longer feel comfortable taking Tysabri. Also, because they recently increased my dosage of Baclofen to 100mg a day. It's not completely controlling my spasticity, but it is helping. However, the side effects of taking the much Baclofen is really taking it's toll on me, making me extra drowsy.

So, as I'm sitting here, thinking that my only option is going to be to wait till BG-12 comes out... It makes me think about having a flare during that break time... With my MS, if I'm not on a medication to slow progression, it is really aggressive.

I've had people ask me... Well aren't you worried about being in a wheelchair... well with all honesty, I've been in a wheelchair, so I guess I can say that nothing will come to a surprise for me. I've been in a wheelchair, and worked my way out of it. I just feel like I need to focus on my day-to-day well being, and not the what could happen... because nothing is certain.

I know that people see me on the conference coverage ( and think, oh she is fine... I am in pain... every minute of every day.... but eventually you get 'used' to it... and just learn to live with it. I just feel that I'm not going to let MS keep me down from doing what I love, and that's trying to help all those living with MS.

Maybe now that I know more abut MS and what can "cause" a flare, I can help try and prevent flares... Whereas before, I didn't know I had MS.. and I didn't know what was causing my issues.

I guess I feel more at ease knowing that I can have a flare, not being on a medication... then sitting there for a two-hour infusion, wondering if I'm going to get PML. I understand everyone's views... and the fact that the chance for PML does not increase until have 24 infusions of Tysabri... and you are closely monitored. But by looking, the signs and symptoms of PML mimic MS symptoms.

Just a small clarification of my "odds with percentage"... I have two kids... both of those I conceived while using 99% effective birth control... so now you know where I stand on my chances w/ the percentage of chances.

I just have this feeling in my stomach that I'm SPMS... and it's not being said. I mean, there are so many people that have MS...that are older and have had the disease for a long time... and mine is more aggressive than theirs... and they just flat out say, "It sounds like you're SPMS".

So on my recent MRI... I had NO new activity! Yayyy! But, it stil noted that my previous lesions were still inflamed.... even being on the Tysabri.

I don't know where my future with MS will go... but I know that I'm going to focus on the day-to-day things... and whatever the future brings, I will deal with that when the time comes. You have to think that right after I was diagnosed, I had a really bad flare, that left me in a wheelchair/walker & the right side of my face paralyzed. I've dealt with a lot already... and I have the support to deal with whatever comes my way.

I'm in no way saying I'm going to be "miss happy go lucky" if I have a flare after stopping Tysabri... Cause I will be mad/upset.... but that's normal. My outlook on MS in general will still remain the same, and I will still continue to try and make a difference to all those living with MS.

So, for the future of MS, I have: BG-12; Alemtuzumab; & Teriflunomide to look forward to, as long as everything goes as planned.

I have to be thankful about the 'timing' for when I was diagnosed... because look at all the progress they are making in studies, where as, 30 years ago... that wasn't the case. Now I know that all these pharma companies are making all these new findings in medication to slow-progression, but I just wish there was a little more attention on how to help us in our day to day side-effects of the damage that is already done.

That's enough of my rambling for right now, I will do an update after I talk to the neuro on Wednesday... fingers crossed?