Saturday, June 30, 2012

Hello Reality...

I just got a slap of reality in my face recently... Let's catch you up to speed.

I went to see my neuro about increased spasticity on my whole right side. So I got the whole lab results down and a full MRI done last week... and I don't have any NEW lesions... and all of the lesions are still in my brain, so that's good news. I was relieved.

I had that feeling that the increased spasticity was from the increased heat here in Texas... the heat really  messes with my MS and I just despise summer now due to my MS.

So, I got a call from my neuro's office & turns out I'm JC Virus Positive... which they said I have probably been JCV positive this whole time and my previous blood was a "false-negative".

When my neuro first brought up Tysabri to me once we learned Avonex wasn't working my deciding factor was if I was JCV positive or negative. So being told I was negative, I was like alright let's do this. And I love being on Tysabri... no side effects from the medication... no NEW activity, etc.

Now I'm like okay... there has been posted that if you are JCV Positive and you're on Tysabri (or anything that suppresses the immune system) you have a 1 in 1000 chance of getting PML. So... My feeling is... I don't want to be on Tysabri anymore... because I would rather chance getting into a flare with my MS rather than even CHANCING get PML.

I have to think about not just myself... but my family. I have two little kids that depend on me and I have to do what's best for my family... and even taking a chance of getting something that cannot be fixed and has the potential of killing me... that's selfish and irresponsible for me to do, in my opinion.

I know there are many people who are JC positive and on Tysabri that's fine.. it's a personal decision. But I'm sitting here in my mind set thinking, okay... if I continue with Tysabri... I'm not going to be comfortable sitting in that chair getting the medication sitting there wondering, okay is this the treatment that is going to cause the PML..

I know there have been trials done about low risk for those that haven't had a lot of infusions... but thats a TRIAL... that's not a cold hard fact. I mean look at the luck I have...

I have arthritis... I get diagnosed with MS... during the spinal tap and MRIs being diagnosed I get told I also have degenerative disc disease and spinal stenosis. Look at my luck... if something can wrong, it goes wrong... I'm not a negative person when it comes to my medical concerns... I have a positive attitude about my MS and life in general, but I do reserve the right to be pissed off when I please.

That's the thing about MS... you never know what's going to happen. You can be doing fine for like a month and then one day, hello... pain and or numbness or both... with so many other possibilites.

So as of right now, I'm taking a "Tysabri Vacation" for the month of July, so I can continue to think about my decision... However, my decision at this point is to stop taking Tysabri and just wait for a medication to be approved by the FDA, which I'm really leaning towards BG-12!

That's all for now, will keep you posted as things change and or time passes by.

(stay cool, I know everyone is really experiencing some Texas Weather right now)

Monday, June 18, 2012

MS in the Limelight

Let me start off by saying, I'm not in anyway opposing MS getting noticed more by the media. But as we know... MS differs from person to person.

So when we have celebrities diagnosed with MS... for one... people need to keep in mind, they have enough money to get the certain doctors... maybe not even in the same country... and can have the modifications done to their house, get the best meds out there without having to fight insurance companies and so on and so forth.

This is why I feel that when MS does get in the "Limelight" that it's not really showing what MS really is and what it can really do.

In the news segments, they don't speak about that there are daily symptoms of MS... they just speak about the "episodes" aka exacerbations. They never speak about how there is no way to reverse the damage that has been done by these 'episodes'... they don't speak about the side effects of the medications that can TRY and slow the progression of MS...or the side effects of the medications for symptoms... none of that.

So while it's nice to see that MS is making headlines... I wish it was actually about the 'average' person with MS... not some one who has 10 billion dollars to do what they want with their medical care when it comes to their MS.

In any case, they talk about RRMS, they talk about remission like you are disease activity free like you're living life no even noticing your MS.

Then with the triggers, if you're like m and have heat intolerance ... You can't do a lot about that, I live in Central Texas an the highs this week are 100 and over. And I don't want to live my whole summer inside... But the cooling vest I have now... Does NOT work with this heat. It melts instantly!

There was a recent article about Jack Osbourne being diagnosed with MS... The headline was Sharon being quoted "I don't want my son to die."

I read that and was like ... Really? Ya MS can attribute to death but how common is that? Now they're talking about him doing a lot of supplements and exercising and a special diet. Great! But I've done the supplements some help some don't... I TRY and exercise but yet his only issue is his vision. If I work out I have to be careful cause I will pay for it the next day... And the only thing that I can really do that helps me is stretching and water exercise... I'm no stable enough to do workouts and my spasticity causes so much stiffness it's hard to do a lot, not to mention my right side is weaker than the left and that's my dominant size. And my foot doesn't pick up the way it should, so even walking isn't easy.

So my bottom line point is... If people want to know about MS... They should ask the everyday people about it... Because that's the REAL MS life... It's nothing against the famous people with MS... They are just able to have better resources for their MS. If where they live is too hot.. They probably have a house somewhere cool they can escape to.

Okay that's all from me. I'm actually at a softball tournament and tryin to stay cool.


Wednesday, June 6, 2012

Been awhile... so here is an update

Yeah, sorry that I haven't posted in a while, that thing called life has gotten me really busy... along with a conference I went to for MS in San Diego... (CMSC) ... but I got to meet Clay Walker, which was amazing. 

So what's up with me... I'm just aggravated, to be completely honest with you. I try and be this upbeat person and a MS Advocate... I love sharing my knowledge with others and learning more and helping others with their MS.. but at this very moment... I'm pissed off at MS. 

So let's see... I got put on meds for migraines... basically I would go outside and the heat caused this huge unbearable migraine for me... to where I couldn't eat or sleep or anything. So I got meds for that... but it's still freaking hot! 

My spasticity is like 10 times worse than it normally is because of the heat... and I can't even seem to be outside. It sucks, cause I love being outdoors and doing things outside with the kids and stuff and my MS Spasticity is putting a really big stop on that. 

I feel like a vampire. I won't go anywhere, unless it's at night. Like today... I needed to run errands, but I decided not to even try until there is NO sunlight outside. Which is also a problem, cause I have issues with driving in the dark. So it's like a lose/lose situation. 

I was talking to my mom  yesterday on the phone and I kinda broke down a little bit, because I just can't handle the pain... I try and put on a smile and be there for my kids and do what I can... but as of right now, I'm lazy and I can't do anything. Even though it's cool inside the house, it's still hard for me to move around because my body knows the temp outside. 

I'm also looking for a new car, because for one my car is old... and isn't gonna last much longer... for two it has leather seats... for three... every time I stop, the AC stops blowing cold air. So I've been trying to search online for new cars... but I can't go looking unless my husband is here to take me because my hands will not let me drive during the day. 

I just feel like I'm going to go through this every freaking year living here in Texas. It's depressing, it's painful and it just all around sucks. So that's why I haven't been so active lately. I did however LOVE being in San Diego.. where the high was like 66.... yeah, was amazing. 

I have to go get my Tysabri tomorrow... and I'm gonna try and talk to my neuro while I'm there, because I just can't handle the pain anymore. I'm on Baclofen and Clonozepam for Spasticity... I can't even take hot showers... note, my showers are consisting of a shower chair with a hand held shower head, but that's getting hard to hold to bath myself. 

Sorry this is such a downer post, but I just wanted to let everyone know too that yeah, I try and have the most positive attitude while fighting MS, but sometimes it just pisses me off and makes me not able to do anything. Kinda like the MS is winning right now... The bad part is... it's not even our HOT MONTHS yet... seriously?!

I really need a get a way to see my best friend in Idaho... I just think the both of us NEED each other right now, and not just on the phone. 

A lot of people ask me if I use cooling products... yes, I do use cooling products... still have spasticity... what do you know. The heat also drains me... like I've wanted to sleep all day long and I have fought it... ALL DAY LONG. I don't even want to go run errands tonight, but I know that I need to. 

Well, I'll check in soon... hopefully!
Take care!