Hey, this is MS Awareness Week. I’m fully aware!!!
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Last friday I decided I’m going to go ahead with the Tysabri. I looked over my MRI reports dating back to 1997 (didn’t have the 1995 scan report on-hand) and was able to read where I am slowly progressing. It’s like quilting man – It’s obvious. Anyway, slow progression is actually lucky I’m thinkin’ since this MS thing can get mighty busy and hungry. So I had a late night discussion with my Neurologist and we agreed. Not in the whole gun to your head kind of way but in the more keep quilting direction. Really! I want to keep quilting as long as I can, keep that vision as long as I can, so I’m going for it.
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I’m in a Yahoo Group with people that have MS. Quite a few have taken Tsyabri. Most have good results – some not. Everyone’s alive. No one died. Naturally I wouldn’t be talking to the deceased. I do like that cosmicvibe but come on, get real! Overall I received some good information from the group and that helped. I think not talking to any dead patients or any near dead patients helped. That last group – near dead – would have freaked me out even more I think. ;> Sick humor always allowed!
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I’m was provided with some skilled support and got a handle on the risks if you can even say such a thing. I don’t believe you can. But I know what my role is. “She” did that for me. She grabbed some information about this MS drug that put some action squarely in my lap. I have a friend that’s just super cool like that. She rested my spirit and continues to remind me of little things when discussing this drug and it’s risk by pointing out … “all the more reason to take extra care of your mind and body in order to keep your immunity the highest possible.” but backs these statements up with facts. Facts that I didn’t have to dig up. Facts about PML (the thing that might possibly take your life but probably not) which can be read here. The Fact is, this level of support is just what I needed from Lorrie, my friend of many years. I guess it’s just easier for her to “grab the bull by the horns” and find out what’s going on rather than depend on me to do all the work. “Reese”, my “Goddess Friend” – she gets it – helps me to carry the burden.
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My Spirit rested. It know where to settle in. That doesn’t mean I’m not pacing a little bit more than usual or having a difficult time sleeping. I am. Because on some level I’m scared. A person in my situation with my personal level of functionality and age should carry a bit of scared. But I’m not all flipped out. I’m not sideways.
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Where to from here? Massive blood donation to the Vampire Department and then a Chest Xray and then a Doctors Appointment to review the results. Then and only then, if I “pass” we can go on to the next step which is all about gearing up for the Infusion of Tysabri. If I don’t “pass” my CXR and detailed in depth blood work we have much bigger problems than MS.
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So Life at LeeHaven is a little busy in that I’m emotionally focused and centered and gearing up for what I believe will prove to be a positive experience. What can you do? Shoot off some simple prayers from time to time. I believe in the power of prayer. …and it’s back to quilting for us. I’ll keep you posted.
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Real Life at LeeHaven Love, *karendianne.
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I know that you can do this. You have incredible faith…endearing love from friends, near and far…and a kicka$$ sense of humor.Now…remember about those 101 questions I asked you? Music? Munchies? ‘Member? I’ve got pencil-in-hand…awaiting your reply. At your convenience though. I just want you to know that I was serious.Prayer-filled hugs….
Prayers are being said for you!
That was a big decision, and I know you did not make it lightly. You gathered as much information as possible and talked to a lot of folks. Your choice was educated, and that is the best kind. Good luck with this treatment. Keep focused and be well. Eyes open love.
Each day, I make out a prayer list for that night and to remember in quiet moments during the day. You are always on it and remain so. I am so glad you made your decision, that has to feel really good to have taken that step! I hope it is wonderful!!! I love the hawk/woman/wolf at the beginning of your post. Parts of all of us!
(((KarenDiane))) prayers will be with you and all around you.
Decision made, that may be one of the hardest parts. Hopefully this will work for you and you will be able to keep quilting for a while.
I am behind in what has been happening with you, but not surprised to hear that you are moving forward. Michele described it best and it is worth repeatingYou go girl-woman-child of the universe… you fly, you howl, you run with the wolves!!!!!!!!!!I look forward to continuing to watch you grow with your quilting!!! Big Prayers, Big HugsAlways!Ru
You have built a great community that surrounds you with healing love. Everyone has said it, just making the decision is the hard part. Now just go along for the best ride possible. We are all with you…Big Love
Spoken and unspoken ~ prayers have been and will continue to be offered for you ~ mind, body, and soul! Take care, dear one . . .
I am glad you feel good about your decision. That is important. I think it helps things work. Hoping the best for you. Love, Em
You’ve made the right decision and you are good to go! Now it is just time to move forward into that action. You have the strength of many women here to hold you tight. We will be your quilt when you come home and need our comfort. Showing up daily to check on you!xoxoxo
You must feel so relieved that the decision has been made. I read all of the detailed information you provided recently and am convinced you’ve made the right choice.Prayers? of course.
I am sending you calm strength, love, healing thoughts, and I will be thinking of you every step of this new journey. I know all will be well.
You are always in my thoughts. Good luck with the vampires…
Sending love, hugs, prayers, good vibes, they’re all coming your way – brace yourself sweetie!
Keep on quilting – and we’ll try to help you to not go sideways!!!! Love and hugs and Ben says he’ll “kiss you on the head” (from his favorite Laurie Berkner song)
As I start my day out with prayer, I try to always mention your name. I will make sure that will be on a regular basis now. I am glad you have made the decision, no matter which way it went. The decision was the hurdle you had to cross first. Now on to the next thing armed with FAITH! Wishing you many blessings as you travel this new journey with lots of blogging friends by your side in spirit.
Wow, you did make a big decision. How great that you have yahoo friends who have had experience to share and ease your mind. Good wishes and kisses!
I agree with everyone else who said that making the decision is the hardest part. Whatever your decision it is the right one. We are all here for you. Sending positive thoughts your way.
Big prayers coming your way….Big. Prayers.Big. Prayers….Please God…
As always, my prayers are with you! I am glad you feel good about your decision, that means much of the battle is won. Positive thinking is a key. I love the book written by Norman Vincent Peale, the Power of Positive Thinking. It really does work, and of course MOST OF ALL, PRAYERS! They are going up for you, dear girl.
I certainly am hoping and praying that the new meds will make you so much better. God bless.
I’ll certainly shoot some prayers your way, Karen.
I’ll certainly shoot some prayers your way, Karen.
Making a huge decision like that is an enormous task. I hope you’re feeling relieved at having made it and ready for the next steps.
What ever you decide to do, we are all here for you. We will pray for you to make the right decision.Lots of hugs!
This didn’t come easy, I know, I am surrounding you with positive loving affirmation of your decision.
Good for you! I know the decision must have been very difficult to make. I wish you the best and pray for a positive outcome. I think it’s time for a “My Tsyabri Journey” quilt. Get crackin’ girl! LOL! Hugs!
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KarenDianne…you will have my prayers on a regular basis. I can only imagine how “on edge” you must be. Sounds like you have some great friends and some support from your group of quilters who have MS.God bless you.Hugs, Mimi
The prayer flags are flying, the energies flowing and if you want any of my blood,you can have it. You go, girl-woman-child of the universe…you fly, you howl and you run with the wolves…you can do this!!!
Good for you for making a decision, often the hardest part. My sister’s still in the decision process. Prayers will be regular from this home.
Well I think you spent a good deal of time making the right decision, Karen! Now that the decision making process is done – you can get back to quilting! My prayers are always with you!Cheers!
Hey girl …. we are right beside you as you go along this new path!
I agree, making the actual decision is probably the hardest part. Here’s hoping it’s all goodness from here on out. You definitely have my prayers winging their way to you from Washington State.
Sometimes making the decision is the toughest part of all…I’ll hang the rosary beads out the window for ya!(sort of like being told you most likely have MS was harder than two months later when the doc told me I did have MS…weird aye?!)