As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.
One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.
When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.
I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! 😛 I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol
I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]
A new adventure is happening, and as always, I will go in head first! Wish me luck!
Love and Light!
Making it Through the Rain 
Many of us understand, Tracy. You’re a lovely human being and you deserve to live a better life. The affects of the disease are too hard to bear and you’re trying the best you can. We can all but hope for you and this treatment. I so hope it can give you some independence back and more interaction with your family – and more chances to annoy them(!).
Much love and good wishes. We need you on this planet!!!!
~Hazel XXXXXXXXXXXXXXXXXXXXX
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TY Hazey, also need to annoy my friends! 😉
xxxxxxx
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I don’t do too well in these conversations…too emotional to do any good. I don’t know why I was brave today? Anyhow, I’m so glad that I already know what a wonderful guy he is, because, this was not one of Roger’s finer (or smarter, for that matter) moments. xoxo
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He actually made me think… That’s not a good thing! lol
xoxo
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I absolutely can feel your pain, Tracy. It always amazes me too, that others, unless they can walk in that person’s shoes, never really know how it feels…and that can include husbands at times, believe me I know.
I am praying for you and this treatment to work in some capacity. As you mentioned, just being able to drive and move around at your discretion, means a lot.
You are a dear friend and I send my love and gentle HUGS to you. Keep fighting, my Fab-sister, you are important to us!!!!
xoxoxoxoxoxoxox ❤
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Mary, as always, ty for your words my friend!! They mean a great deal to me!
xoxo
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I get you my BFFF, and damn those pesky side effects. I hope this works for you even if it is just a little I need you around to be annoyed and annoy you right back. Love ya♥
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I know u get me my bfff… sucks don’t it! ♥
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Tracy – Chronic illness is fatiguing and I SO get the ‘I don’t want to die, just want the pain to go away…’
I send you love, hugs, prayers, positive vibes and every other loving/positive thing I can muster for a miracle to happen for you.
*hugs*
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TY Maria, your words mean a lot to me!
xx
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I’ve got my fingers crossed for you, Mz Tracy!
Hugs & kisses,
Cathie
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fanks Cathie, cross the toes and eyes too! lol
xoxo
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I really hope it works for you! I want you to do all those things that you want to do. The walking, driving, playing with your kids and annoying them 😀 I wish you alot of luck my friend. (((Hugz)))
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Annoying my kids is on the top of my list!! 😉
hugggzz
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Tracy, you’ll remain in my prayers in hopes this treatment will help you. Your family, friends ..and even your “fab” acquaintances like me, are blessed to have you in this world of ours. Although I don’t know you like your family and friends, I know what an amazing lady and wonderful human being you are. You deserve to be well again and live the life you dream of. And I’m certain there are many of us out there, you don’t even know or hear from that keep you in prayer and wish for your miracle. Hugs & love to you, my fab friend. ♥
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Rose, ty so very much for that! I think of my fab girls as family!!
xoxo
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Extremely understandable there, I hope you do find some relief with this treatment!
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Thanks Kristi!!
xx
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I don’t have chronic pain, but my hubby does as you know.. So I kind of have an understanding of what you are going through.. I hope this medicine works great for you Tracy… I want you to be able to do everything you want to do plus more… God bless my friend!! ♥ ♥
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thank you so much!! I am hoping for the same! ♥ ♥
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Hey Tracy,
I`m new to your blog, I found it recently and I followed your progress through several posts of yours. You can inspire strength and hope to others with the same disease and you can offer advice which they cant find anywhere else. I cant imagine the daily struggles you must go through every day.
Be strong.
“May the love hidden deep inside your heart find the love waiting in your dreams. May the laughter that you find in your tomorrow wipe away the pain you find in your yesterdays.”
Best regards,
John.
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Thank you for your words John!
I try my best and fight the good fight daily!
Tracy 😀
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