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victim of the pharmaceutical industry

CagedBird

Entry posted by CagedBird

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Thanks everyone for all of the love and support on my stroke anniversary last month. In my last entry, I talked about how the medicines Im on made it hard for me to celebrate my stroke anniversary. I saw my neurologist and have to go back to see him in a few weeks. I told him about the side effects from my seizure medicine so he gave me a test trial of another seizure medicine to see if it helps decrease the side effects and help my white blood cell count. Today I seen my pain management doctor. I reminded him how tired the baclofen makes me but told him I decided not to get the baclofen pump. I just didnt want to get it implanted in me then if something happens to my dad's insurance I would just be out of luck. I am also going to stop taking the baclofen. We set up a schedule to gradually have me off of it by next week. I have been on it since 2007 and it has always been great at decreasing spasticity in my fingers and stopping muscle spasms in my legs. but im just tired of being tired. I need a break from these medicines. If the spasticity comes back and is worse, I will get back on the baclofen but I just wanted to take a chance and see what difference it will make without it.

I got bad news that my dad's insurance is not going to pay for the bioness. I don't know the total cost but Vocational Rehab might pay a portion of it ($8000?) if my rehabilitation counselor can convince her supervisor that it is legit and will help me in the workplace then she has to bring it in front of the board then the state has to approve it. I don't know how I would pay the rest. I know I said I was going to try and keep this blog positive but I have been feeling everything but positive so I probably won't be blogging as much. It just seems like I never get far in my recovery. I endure a painful session of botox injections just for it to wear off in a few months. I endure months of therapy just for it to end and my arm goes back to being the same. Baclofen makes me weak and tired and my only hope at ever using my hand again with bioness is no longer possible. The reality is painful and no list of academic accomplishments could take the place of me feeling my hand move just one more time. Thanks for reading and sorry I haven't been active in the boards and blogs (been sleeping a lot.)

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Guest hostwill

Guest hostwill

Posted

KATRINA,

I WAS ON BACLOFEN AND IT MADE ME TIRED TOO. THE DOC PUT ME ON KEPPRA FOR SEIZURES AND ZANAFLEX FOR SPASTICITY. I'M SORRY ABOUT THE BIONESS, BUT SINCE IT IS EXPERIMENTAL DEVICE A LOT OF INSURANCES WILL NOT PAY, i NO LONGER DO BOTOX EITHER BECAUSE IT IS JUST TEMPORARY AND THE SHOTS WERE PAINFUL. I KNOW YOU HATE TO HEAR THIS BUT TIME IS THE ONLY THINGS THAT WILL GET WHAT WE LOST BACK. THAT'S THE COLD HEART TRUTH AND I KNOW IT IS A TOUGH PILL TO SWALLOW.

-WILL

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HostAsha

Katrina:

 

I feel the same way about botox, never tried baclofen, though for me acceptance comes in handy. I refuse stroke to take away anything more than it has already done. I would not allow it to take away my happiness from me. I am enough & great without my left hand & I m not defined as a person without my left hand. I can't choose t o get happy when my left hand comes since I don't want to waste this precious present time with my family. if you constantly looking at something else to make you complete & happy you are missing rest of things which r making you such a special person as you are.

 

Asha

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Guest

I have a hard time seeing you as a victim of anything. I see you trying so hard and obstacles popping up left and right, but I see you finding ways around them and succeeding anyway.

 

I know sometimes it's frustrating as heck...I won't say it's not but a victim takes whatever they are handed and I never see you doing that because You, Katrina, are a survivor.

 

Whether it be Baclofen, Botox or Bioness or something else I believe you will find a way.

 

Jamie

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Ethyl17

Katrina: there are no "magic" pills in stroke. It is one day at a time, fight to the finish! I agree that it may be time to wean off some stuff, re-evaluate and re-consider the current difficulties and the new therapies, and yes that includes Pharmaceuticals, that are being offered. Our Dean follows these topics everyday.

 

You have been on an uphill run for so long and have worked so hard. Yes, give yourself a break, recharge and come out the other end stronger and positive. Best, Debbie

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clement

Katrina,

 

I am one year post and I had my Doctor wean me off of my seizure medicine due to the side affects and so far I have been OK. I too get tired and frustrated, but I just try to keep on keeping on. If I don't just push myself, I feel like I could sleep all day and sometimes I do just that. You have to do what your body is telling you to do and if that is rest then do it. I keep telling myself that there has to be a reason why I survived this. The other med that I had to stop was my Cholesterol medication. It gave me some really bad leg pain. So I understand what you are going thru with the whole pharmaceutical thing and on top of everything I do not have any insurance and I am not eligible for medicaid because my disability money puts me over the limit.(Yes that big stack of money) :2cents:

 

All of my care and medicine is out of pocket. Anyway, hang in there, things will get better. They have to Right!:happydance:

 

Mike

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