Category Archives: Tysabri MS

Ocean Waves and Other News

My 2nd Ocean Waves block is finished. They both took 90 days. This time I fussy cut the center with a bird. I’m not sure where I’m going with the birds. I haven’t looked over the print to see how many variations there are. Not worried about it. Based on my process, I have time. I need 3 more blocks so this whole thing is going to take a while. I have an update on my hand/wrist but it’s not huge news and really, not much has changed. We’ll just see how things go is the best way to explain it I think.

P1016874

In other news…

I’m having a round of IV steroids for a minor MS flare-up. I haven’t had a flare that required treatment since August of 2008. The medication I was on, Tysabri, was incredible. I’m off that as of the 9/5/13. I’ve done well off the drug, no sudden Rebound Effect or anything, just this minor episode. They wanted to give my body 90 days for the drug to wash out of my system but we actually got 5 months so that’s a win in my book.

I don’t feel like doing anything. No food tastes good and all I want to do is lay around. I’ve tried reading and I can go for a couple pages then that’s it. The treatment of IV Solu Medrol is a gift because it’s something that can slow down what’s happening in the moment BUT it’s a rough go. However, it can’t be that bad if I’m sitting up and writing you now can it? True!

Talk to you soon I hope!  …and thanks for still being here y’all. *kd.

 

 

 

Just Thinking…

Oh no, I haven’t thrown in the towel on this thing, this blog, but let me tell you I’ve come close. I like to quilt.  Shucks, who am I kidding? I love to quilt but it’s not all I have going on. One thing though, I love coming across inspiring quilts like the HST pink quilt that Lori shared when she went to the Aurora quilt show. I’ve been into HST’s lately which I swear I thought would never happen in my life.

It happened because Paula Barnes and the Bonnie Blue Cotton Club BOM. You can see below where I made the 5.5 unfinished Crown of Thorns and lordy bee after I made that one I had to take the pattern and up all the measurements so I could make it bigger.  Ohhh, I love that block. (What do you think of a Crown of Thorns quilt?) I have to admit it’s a heck of a lot easier with Inklingo so that’s probably why I’m good with these.  They whip together like butter. Slick and quick. No papers to print on or tear off. Its all on your fabric. If you’re seriously interested, and I hope someone someday really is – do let me know!

And hey, what do you think of my Blueberry Crumb Cake (Blackbird Designs) blocks? It’s one of those I can’t buy but I thought with the Charm Packs I could mess with and mess with I did. I came up with nothin’ until a friend of mine worked this idea up.  Those block are 5″ unfinished and the HST’s are 1.5″ finished. I’m adding a few pieces from my own stash as I go along with No Plan.  ;)

Then there are the Square-in-a-Square blocks. You know I really like that block? It’s a favorite of mine. So I made a couple different sizes yesterday playing around with my new ruler. I picked this up at the Quilt Show a month or so ago but didn’t have time to play with it.

There’s no plan here though except to keep going. I’ve got these plus 4 more that need some frogging. I’ve been working on this during sew days. Lots of progress and lot more to go. This is not the final layout. It’s up for motivation and general sizing.

So that’s the quilting life and I’m grateful for it. In between the threads I got to practice being a patient – going thru tests, waiting for results (and boy that’s fun), finding out the results and dealing with the emotional distresses from all that. Ultimately it all worked out for the best for this moment in time. I’m moving ahead with an uncertain future but that makes me just like everyone else – doesn’t it?

And my microwave gave up the ghost and you know I’m thinking of living without it for a bit?! Grocery shopping this morning felt like bags of work for me! I’m starting this week with spaghetti and a lot of steamed vege’s because I do have a steamer and then rice. Sandwiches. Apples and Yogurt. Eggs. I reckon it’ll be time to bring out the crock pot, ha?

Dear friends, thank you for your visit. I hope to get back into the groove of blogging but you know, I’m still just not sure how I’m going to work it out. I have to give this all some thought. Can I blow off this One Ton Burnout and find a new vibe or is it time for me to just walk away. It’s been about 6 years by now. That’s a good run…

Superstitous

Pleased as punch, I’m ready.  Slept well, fully hydrated and pretty much relaxed.  Finally!  I’m learning.  Well, not just that.  I have a great network of support and while I imagine it get’s monotonous to go through the “call tree” routine at this point – it’s a routine that keeps me grounded and feeling safe and loved.  

Look, we’re pumping a bunch of a new drug into the body to deal with MS and it’s working and it’s all great.  But I’m as superstitious as professional sports player. I’ll take all the charms and prayers and little routines I can get.
Anyway, taking this drug is literally a death-defying act. Whatever works!  My Neurologist says:  “I’m all for the placebo effect.”

By the way, Dr. S (my neuro) says they’re not going to be reporting when a person die’s from this drug to the public pretty soon.  I need a little more info on that.  Maybe I didn’t hear that correctly.  Surely we can trust the Gov’t and the Drug Companies.  Right?  hee!

The Duke of LeeHaven-shire

No quilting to share. Just a little “remember when…”

Happy 2nd B-day Duke (wiggidy).


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“I’m very busy climbing up this tree. See my foot here at the bottom of the shot? I had to get this stick the nice lady shared with me today.”

“A nice lady came today?”

“Yepppp. She likes me.”


“You made a friend?”

“I did, I did, I did!!! I heard her mention I was lean. Can I have more food now please? I’m a starved-half-to-death dog”

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And while he’s starved have to death, I’m in the process of recovering from my IV infusion. Today wasn’t as I had hoped. The IV dose wasn’t as easy as I had planned but I kept busy and moving. No quilting just doing things, puttering. I’ve got some pain going on. Joint and whatever. Called the Medical Establishment so the lines of communication are open but at this point I’m simply not supposed to over-do-it and stress my body out. I get it. Whatever.

Tomorrow’s a new day and we’re likely to be feeling fine…

Morning Motivation

Good Morning and thank you for spending a bit of your time at LeeHaven. I only have one project in focus to share this morning. I love this quilt and thank you to everyone that offered their take on how to get it nice and flat.


You have to have a dream so you can get up in the morning.

~Billy Wilder


My dream. Lots of those dreams in the quilter’s realm, eh? Wish I had more progress to show but I guess I really only sew 3 hours a day max (I’ll have to maybe track that because I feel so slow). Maybe more on a really good day but that’s about it. And I’m not a fast sewer either. I’ll bet there’s lots of fast sewers around. You one of those – a fast sewer? I’m slower. Even with paper I’m slow. If I speed up I miss the lines; what’s the point then?

I wonder if I was a slow kid with the crayons, too? I mean, did I need to be slow to stay in the lines? Just a rambly thought.

Over at The Squash House, Candace shares something really cool that I think might help me to speed up though. Stitching Lines. I’ve never seen them and if you haven’t her post is here.

If I remember correctly Kanga had a very busy day and was all tuckered out. I can’t exactly recall what the day was about but surely she was busy – doesn’t the picture say it all? Surely she isn’t taking advantage of me. Surely not…


There’s new info over the wire. The drug Tysabri continues to prove it’s benefit to MS patients overall health and well being. If you’re interested in reading about this update in its entirety check it out here. Also, not in this particular update but of interest – they’re learning more about how it triggers PML, which if you missed that update it’s just a seriously bad side effect.

I have some side effects. One of them is a kickin’ joint pain. Especially in my left hip. Ouchie mamma! Enough to put those pain management techniques into gear. Plus Aleve. Working through it. Keep moving always helps but still, joint pain is not fun. I’m understanding how that feels now.


sunrise photo credit here.

The Healing Arts


I woke this morning a bit scattered in my thoughts. It took a bit of quiet before I could shift and drift into my own landscape.

Skilled in the Healing Arts I am Not. But I am aware when it’s time to switch gears and tend to my own Spirit, my own body and cells in order to assist in the healing treatment I go through. I know that I have to leave everything behind and connect to the best I can bring to the infusion. The best Karen I have in this moment.

And it sometimes takes a little bit of something from deep, deep, deep inside because life interferes and it’s a rough go. There isn’t anything more important than this moment. This moment with all its pollutants and mind viruses. Those things, the viruses of the mind specifically, have to be cleared out. It’s utterly important. And it is with sheer force will and utter determination I do this. Then, I let go and shift.

So it is that I’ve been shifting. Shifting into a place where I can be open, connected and ready. Open to the best Karen has in order to receive the best that the medication has to offer. This is serious business. Not because of the content of the medication or the side effects (although those aren’t to be ignored) but serious because this is about Healing.

Figuring out how to open up to being healed in the first place is no small task. A feat and an on-going practice. And in practicing you notice the buds being opened and the petals reaching out, rejoicing the light. Because these are the thoughts, the healthy viruses that keep it all flowing… It’s kind of how it works. Mystically and with Love.

(ps: I can’t believe I have that entire quilt cut out! I’ve never done that before and I’m ready to sew, sew, sew.)

The Little Adventurer

What is the essence of a noteworthy experience? Is it the emotion that lingers or simply the fact that something occurred? Maybe a little of both as you’ll see from my noteworthy day.

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The sun was not out. It was only 80′ so that meant I could go to the quilt shop. I’ve been feeling great, why not? An opportunity for an outing. I load up and go. Again, the burning, sizzling, raging, radioactive sun was not out. Gosh it was only 80′ out. It never crossed my mind that I wouldn’t be able to do this. You know, take a quick trip to the Quilt Shop. I was able but really, I wasn’t.

I did okay, don’t get me wrong. There was no drama. I simply needed to stop and rest and stop and rest. When I made it home I put my stuff down, didn’t let the dogs out of their crates (1.5 hrs – they’re fine) as is the routine, didn’t eat lunch, didn’t do anything but the chores for nap mode. Phone goes and I go to bed. Even Kingston left me alone. Didn’t bother to snuggle with me at all. He knew.

This is MS and hitting the wall with fatigue ~ suddenly. When I woke from my nap I found out the lawn dudes were here. That always wakes me up. Not today. I slept right through it. Gosh today was like waking up in Oz. The thick grass was no more and everything was clean. Magically. I was seriously tripped out. My neighbor clarified when I checked.

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I’ve been asked by friends and family if I’m noticing any changes/feeling different since I started taking this new medication. I’ve got a couple things going now. More active lately around here which is great and today’s sudden hitting the wall fatigue. It does happen but this was of more significance when weighed against the activity. What I’m saying is that for the way I felt you would have expected a walk along the back forty of the Mall Parking lot. There’s no troubleshooting needed or judgment and analysis here. It’s a fact worth noting. An experience. Thing is, it’s also a little scary. I didn’t like being out in public feeling that bad. I didn’t drive home, I made it home. ~ and those are my emotions associated with the experience.

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Sounds more like an adventure when I think about it! hee.