ME/CFS Documentary
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine?ref=card
Friday, June 28, 2013
Kickstarter Project...
Please check out the following Kickstarter Project from a ME/CFS patient and now documentary filmaker.
ME/CFS Documentary
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine?ref=card
ME/CFS Documentary
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine?ref=card
Sunday, June 23, 2013
Saturday, June 22, 2013
Luck
I miss my friends.
Tonight via Facetime it shook me to the core of how much this illness has cost me. And sometimes it's just too much. I cling to the beauty that I am lucky to have had so much to lose; I will tell you one thing I have learned, I never needed to get ill to understand this fact. I have learned a lot about myself and how to push on when you think you can't do it another second. I have learned what it feels like to be isolated and compassion for those that have never known any other way. But I never needed to learn what I had to lose, and for anyone out there waiting for some big event to show you, I have learned to find a place in my heart for you that it took you so long.
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| How lucky are those that find true friends I am one of the lucky ones |
Tonight via Facetime it shook me to the core of how much this illness has cost me. And sometimes it's just too much. I cling to the beauty that I am lucky to have had so much to lose; I will tell you one thing I have learned, I never needed to get ill to understand this fact. I have learned a lot about myself and how to push on when you think you can't do it another second. I have learned what it feels like to be isolated and compassion for those that have never known any other way. But I never needed to learn what I had to lose, and for anyone out there waiting for some big event to show you, I have learned to find a place in my heart for you that it took you so long.
Tuesday, June 18, 2013
Crafty
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| Like those Make-Up Kits with a whole lot of too much |
It has been a complicated and challenging four weeks. The most difficult was once again accepting the reality that I could go from walking into my BFF's daughter's first communion and being treated like the "Aunt" rock star jet setting for four days for the special occasion and then feeling like it was all a mirage. Participating in life for a bit and then your fairy godmother turned into the mean queen and your 3 wishes disappear; I returned from that high to Phoenix with soul crushing fatigue. The mind game of believing you had pulled this whole damn thing off and then then falling into a sink hole just when you thought you were walking on solid ground.
Right now I don't feel like going into the details. But this event reminded me of what it feels like to be desperate with this illness. I called my parents at noon Milwaukee time and asked my mom to get on the 5pm flight to Phoenix. I just couldn't do this without 24 hour help. And she was here. And it made all the difference. It's a humbling and frightening feeling not being able to care for yourself. I am doing better now, my mom stayed for three weeks and left this past Friday. My doctor is out of town this week and wanted me here longer and see how I hold up without a week of treatments.
I am too tired to do much of anything, and the days get very long. A friend suggested I do a craft, luckily he prefaced that statement with, "I know it sounds silly, but what about some sort of craft, knitting..." that's about as far as he got before I said, "have you met me?" However, I had a few weeks back done a "craft" photo book for my niece as a present for missing pre-school graduation. Then a bit of nostalgia brought me back to the special days my Aunt would take me to the needlework store and patiently try to share with me the joy of counted cross stitch, it didn't work. There never was a craft that I finished. My cousin Katie and I had a bet who could finish one of those 70's loop yarn projects where you got the little tool and the mesh was color coated, Katie finished a Panda pillow, God only knows what happened to mine. My sister took up knitting in second grade, even made me a sweater, and this was way before the Hollywood knitting craze. Me, not interested, not at all.
However, despite the idea feeling as rousing as being a 40 year old at a nursing home; I found myself on Amazon searching out craft projects and with one click had ordered the above box and some canvases.
Yesterday I never left bed. But today I felt a bit stronger, and that "deluxe craft set" was way too overwhelming, so I stuck to crayons and some sharpies, and I have to say it wasn't that bad. It made me laugh because of the absolute lunacy that on a Tuesday afternoon I was doing an "art" project, made more bearable that Sex in the City re-runs were on in the background. Then I laughed more picturing my friends and I in a nursing home listening to some lame 20 year old shout out where to glue your tissue paper as the soundtrack of our hay day would be playing v/s the big bands and Betty Davis movies that I would hear when I sat with my grandma at those equally soul crushing institutions.
If nothing else, it gave me some humor back in this mostly overwhelming condition. It forced me to adjust what felt like success for a day and be grateful that I was even downstairs rather than the confines of my pretty bedroom. Who knows...maybe I will take up knitting next...not a Fucking chance in Hell. I'm down, but I'm not out...
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| Can you guess which is my Work of Art |
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| Project 2...Niece just informed me to add some people on the mountain... and maybe some birds and a cactus....will do... |
Signed sealed to be delivered
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| Sophie...really? can we fit any more on this bed |
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| The Side I am not Sleeping On - |
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| The Side I am Sleeping On - |
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| Everything Within Reach |
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| Me too Soph...I'm Beat... |
Wednesday, June 12, 2013
Long Haul
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| Be Kind Whenever Possible ~ It is always Possible Dalai Lama |
Wednesday, May 29, 2013
Want to meet...
I like this woman...I like her a lot and I have never met her, probably never will, but it doesn't matter, her brain is working faster than mine is right now and I like anyone who is wicked smart..
Check out her blog...thank you Mary Schweitzer, thank you very much.
Slightly Alive
Check out her blog...thank you Mary Schweitzer, thank you very much.
Slightly Alive
Sunday, May 19, 2013
Hair
My hair is beginning to fall out and I am scared. It's one of those things that at first you kind of ignore or make excuses for such as..."well it's always in a pony tail.." Well my hair has been firmly in a pony tale for about the last 5 years and I don't remember taking a shower and putting a handful of hair on the edge of the shower so it doesn't clog the drain. I don't ever remember the waste basket besides my bed all of a sudden accumulating hair that comes out when I run my fingers through it. Or the new routine of feeling like a need a shower to remove the strands of hair that or lingering on my arms, legs and shoulders. It's these things that you don't ever remember even crossing your mind. And then it's the careful examination in front of the mirror and seeing these little areas of a hairline that use to be different.
I don't say this about most of my features, but I love my hair. I became devastated about fourteen years ago when I became allergic to hair dye. It took about a year to figure it out. I kept breaking out in hives around special occasions. People would say, well maybe you are nervous to be in your cousin's wedding...no disrespect but why in the hell would I be nervous, I'm not the one getting married. And then the fateful day when I got a deep deep red color and 6 hours after I got home my neck was so swollen in hives that I took so much Benadryl I was knocked out cold. When in the morning I still was swollen, I called the salon and said, "are people allergic to hair dye?" and got a resounding "yes." No fucking way!!!! Had I known what was coming down the pipe line this would have been a blip, but at the time I LOVED dying my hair. I tried for awhile all different types, but after landing in Prednisone land for over 2 weeks a wise decision was made that this was the end of the road. One of the up sides is that because I no longer dyed my hair I have Locks of Loved it twice.
Luckily, I have pretty hair. The color is really nice, and somehow at 41 so far I haven't gone gray...where is the wood I can knock on. Now in the grand scheme of things this hair dye thing, though I still miss those fresh shiny locks that seem to wake up your face, it's one more thing that just moved way down on the list. But this, please no.
I was okay until I was going through old pictures while putting together a picture book for my niece and saw some photos from this past Thanksgiving, and my friend Jami even said, there is no denying your hair isn't the same. The good news/ bad news is, I thought it would make me cry. But it hasn't, and that in it's own way shows me what I have learned to live with or I should say without. It's hair.
I talked to my doctor briefly about it, and she said she was surprised I hadn't lost more sooner. So, we will see. I am ever hopeful it's a temporary situation from the exhaustion of the treatments. I have three more treatment days left and then the summer off. So we are working on the plan to "re-build." If you had given me a list 8 years ago of all that would be taken away from me I would hand you it right back and say give me a bottle of pills and a cozy bed and it's been a good ride. And then you come to find what you are really made of.
I don't say this about most of my features, but I love my hair. I became devastated about fourteen years ago when I became allergic to hair dye. It took about a year to figure it out. I kept breaking out in hives around special occasions. People would say, well maybe you are nervous to be in your cousin's wedding...no disrespect but why in the hell would I be nervous, I'm not the one getting married. And then the fateful day when I got a deep deep red color and 6 hours after I got home my neck was so swollen in hives that I took so much Benadryl I was knocked out cold. When in the morning I still was swollen, I called the salon and said, "are people allergic to hair dye?" and got a resounding "yes." No fucking way!!!! Had I known what was coming down the pipe line this would have been a blip, but at the time I LOVED dying my hair. I tried for awhile all different types, but after landing in Prednisone land for over 2 weeks a wise decision was made that this was the end of the road. One of the up sides is that because I no longer dyed my hair I have Locks of Loved it twice.
Luckily, I have pretty hair. The color is really nice, and somehow at 41 so far I haven't gone gray...where is the wood I can knock on. Now in the grand scheme of things this hair dye thing, though I still miss those fresh shiny locks that seem to wake up your face, it's one more thing that just moved way down on the list. But this, please no.
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| Good Hair Day - November 2012 |
I talked to my doctor briefly about it, and she said she was surprised I hadn't lost more sooner. So, we will see. I am ever hopeful it's a temporary situation from the exhaustion of the treatments. I have three more treatment days left and then the summer off. So we are working on the plan to "re-build." If you had given me a list 8 years ago of all that would be taken away from me I would hand you it right back and say give me a bottle of pills and a cozy bed and it's been a good ride. And then you come to find what you are really made of.
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