Does My Butt Make My Butt Look Big?

So, I stepped on the scale yesterday and the digital screen must be broken or something. It said I weighed 142 lbs. That’s not bad, but for a 5’1 ½” me, it’s a bit on the chunky side.

I can’t diet. No, let me rephrase that, I won’t diet. My esophagus is so damaged and with the progression of my disease, I don’t cut anything out of my diet unless it causes me harm, such as alcohol and jalapenos. So, I’ve got to get moving. With hand and foot contractures, not to mention zero fat pads on my feet, high impact exercises such as running is out. I’d like to get back o swimming, but with the cold weather, I risk a Raynaud’s attack so I’m going to challenge myself to 120 days of yoga.

So, here I go. Would today be Day 120 or Day1? I will go with Day 120 because I like to count backwards. So, here I go. I give it 7 days. Maybe we could get a pool going?

I also added this blog to Open Salon. It has a built in audience and maybe we could raise some awarenss there. If you are already a member and would like to follow me there, just type Karen Vasquez into the search box. My first blog will be an introduction to Scleroderma and Sarcoidosis for new readers. After that, posts will be identical.

So here I go, Day 120. I'll keep you all posted. Have a great day everyone!
For more Reading"

"Exercise Can Help" By Jane Brandenstein, P.T., University of Pittsburgh Medical Center (originally published in "Scleroderma Foundation Newsline," vol. 2, no. 3, Summer/Fall 1999)

Everything Else Is Just "Spoons"

This blog is not just about me and my experiences. I want my readers find things that have helped me and form their own opinions.

I am very grateful to Christine Miserandino. She wrote "The Spoon Theory" at butyoudontlooksick.com. Check out her blog and learn about someone living with Lupus. You don't have to have Lupus to find it helpful. I have adopted her Spoon Theory to help me when things get overwhelming. The Spoon Theory has helped me understand why I need to consider my health when deciding what I can handle. I have a very hard time accepting my limitations. Turning my projects into "spoons" has helped me let go of my unrealistic guilt I give myself when I don't live up to my own expectations. I don't think of myself as sick or limited, I probably never will thanks to denial. The Spoon Theory helps me put into perspective what is really important, like taking care of myself so I can be there for my son. Everything else is just "spoons".
Thanks Christine!
Progress that brings us closer to a cure or provides better treatment for symptoms of Lupus helps everyone with a chronic disease. We are all connected. If you want to help, join me and make a donation to sponser Team Christine at the 17th Annual Walk Along for Lupus. If a donation isn't in your budget, check out her blog and learn about her experiences. Awareness and education is priceless.

For further reading...

Foundation for Sarcoidosis Research

The Scleroderma Foundation

Scleroderma Research Foundation
Lupus Alliance of America

No Big Wup, Let's Talk

Paul La Due brought to my attention an article in Huff Post "Is There a Cure for Autoimmune Diseases?", based on a young girl who eliminated gluten, dairy and sugar from her diet. I am currently doing research. I do not agree with the title of the article. A cure would mean universal elimination of a disease for all patients. The last true cure was Polio. Treatment of symptoms is not a cure but simply that, treatment. I do however see how a change so dramatic as eliminating sugar, gluten and dairy could really benefit a person with an autoimmune disease. My question is, has everyone who has eliminated these things experienced relief?

I have started a disussion on Face Book. If you have done something like this and would like to share, go to my FB Page and join the discussion.

Please note, all soliciations will be deleted and solicitors will be blocked from my FB page and be flagged.

Thanks Mike Myers for the Title

"Lay off me, I'm Starving!"

"Is There a Cure for Autoimmune Diseases?"

Scleroderma, Sarcoidosis and Box Wine on Face Book

And just to make you smile and remember Phil Hartman and Chris Farley

My Dreams Make Me Tired

And according to Regis and Kelly, my bra doesn't fit me either, but I digress.

I woke up this morning exhausted. I was asleep by 9:30 and when I woke up at 7 this morning, my whole body was tired. I wish I could remember what I did last night in my dreams because I know I accomplished something.

I could feel the lymph nodes in my chest because I could not breathe as deeply as my norm and the more I think about my day of packing and calling utility companies to set up services, the shallower my breath gets. It’s time for some serious stress relief. First, I am going to set up my utilities. Then I am going to the Y to do some exercises in the pool. There is something so relaxing about it. Hopefully that will help me reboot and get me packing. I'll keep you posted.

I have to admit I feel very egocentric going on about how I'm dealing with stress and keeping people posted. But I also fell like if I don't share, maybe there's someone out there who woke up feeling exhausted and maybe taking the time to share my experience can give them some ideas to help them get through their tough day. I have had so many days that started out like this and resulted in leaving me curled up in a ball under my covers. Just finding a healthy way to deal with what the universe throws at me is an accomplishment in and of itself and it makes me feel as if I am kicking my depression in it's teeth. Or I have an over active case of undiagnosed narcissism. Either way, sharing makes me feel like time curled up in a ball was not spent in vain.

Foundation for Sarcoidosis Research
Scleroderma Foundation
Scleroderma Research Foundation
Interstitial Lung Disease
Depression with Chronic Illness
The Stress of Moving


http://www.thenakedscientists.com/HTML/content/latest-questions/question/2032/

A Word About Sarcoidosis

I'm moving this weekend and doing the prep that comes with it. I haven't had much time to write, but I did find a blog with some helpful entries and links to other blogs. These nasty diseases are different for everyone and I encourage readers to visit other blogs to get as much info as possible. Check out The Sarcoidosis Experience, if you get the chance. I am also happy to post for the first time, a link to a Sarcoidosis fundraiser. I found it at The Sarcoidosis Experience blog and there is also a link at the Bernie Mac Foundation website. If you can't donate, please take the opportunity to learn more about Sarcoidosis.


Scleroderma Foundation
Scleroderma Research Foundation
American Lung Association California

Now What?

Well, I'm not in remission or cured. I just feel better. Sure I have ongoing health issues, but that part of my life. I will still have the PFT's, Echo Cardiograms, Thoracic CT's, upper endoscopies, infusions and blood work. That list I just mentioned- I'm terrible at making those appointments. I dread them all. (Except the endoscopies because I never remember them and I always feel very relaxed and happy afterward.)

My problem isn't the tests. My problem is I need to stop making such a big deal out of it. It's important, but every day people make changes because of their health. For example, a person gets a high cholesterol score and works really hard to make everyday lifestyle changes just to prevent something from getting worse. They cut things out of their diet cold turkey, take the extra time to prepare fresh vegetables and learn to love them and make time to exercise. It doesn't happen for them overnight, but they do it. I have a lot to learn from them.

I take the easy way and the easy way is not always the best way. I feel like it's making me lazy. I avoid preparing food for myself. I'll opt for a protein shake and maybe some toast instead of taking time out to prepare fresh food. Sure that's okay sometimes, but I am doing it all the time. The result of this is I forget to shop for food. When I do feel like eating I end up eating fast food. After reading the last two statements, I don't just feel like it's making me lazy- it is making me lazy. Maybe it is time to be hard on myself.

Infusion Fun

I was the lucky recipient of a Remicade infusion I get every 8 weeks. I planned on doing a ton of writing, but instead opted for the nap. I rocked out to Snatam Kaur while I feel asleep. Something about the chanting of a mantra with some smooth sounds from a sitar, really clears my brain. I'm no chanting aficionado. I heard this CD at Kundalini Yoga class I took three years ago; I attended regularly and bought a DVD. At the end of the workout, there was meditation with Snatam Kaur’s music, very mind clearing.

I learned something today. It tool 3 sticks to get my IV started. More is not the norm. I think it was the Jack in The Box I ate before my appointment. So I'll just add that to my list of things not to do before my infusion. I have no scientific data to back this up. I am basing my theory of how I can control things on my personal experience. For example, if I don't drink enough water before an IV stick, that usually results in a second, third or 4th IV stick. I came to that conclusion when I was in the hospital on the cardiac floor of UCLA with a MRSA (that's a whole other blog entry). My IV had to be moved and there was consideration of a PIC line. Determined not to add another complication to my hospital stay, I tried to think if there was something I could do to make my veins behave. I thought about my routine in the hospital, and while in my morphine/hydrocodone haze, realized I wasn't getting enough water. So, I finished what was in my lovely pitcher I could take as a parting gift. I was on a lot of morphine and hydrocodone and it's easy to get dehydrated. An hour later, another attempt was made to move my IV before calling the PIC line Nurse, and it was started with ease.

As I stated earlier, this is just my personal experience. The results of my drinking water could have been psychosomatic, but who cares? I really don't care how something works, just so long as it does. Besides, what better ways to relax a control freak than letting her think she can control a situation most likely out of her control. Denial ain't just a river in Egypt (Mark Twain); it's a fabulous coping skill.

Thanks for reading:-)


Best Description of Sarcodosis I have read yet
Foundation for Sarcoidosis Reasearch
Scleroderma Foundation
Scleroderma Research Foundation
Remicade
Spirit Voyage
Snatam Kaur
Livestrong.com
Books I have read and found helpful:
Strength in the storm: Creating Calm in Difficult Times
The Places That Scare You: A guide to Fearlessness in Difficult Times
(Just for fun)
My Horizontal Life: A Collection of One Night Stands