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)
Showing posts with label http://www.scleroderma.org/medical/frequent-questions/frequent-questions.shtm. Show all posts
Showing posts with label http://www.scleroderma.org/medical/frequent-questions/frequent-questions.shtm. Show all posts
Friday, November 5, 2010
Thursday, September 2, 2010
Support Steppin' Out in Pink
In 1994, I moved to La Crosse, Wisconsin from Southern California. Being a California native, let's just say I'm lucky I didn't die of hypothermia. I survived Wisconsin and fell in love with it thanks to the Krause Family. Roger and Luanne, their children Christie, Leora, Roberta and Carl. I met Carl while I was in the Navy and I moved to Wisconsin with him so we could both attend nursing school at Viterbo College (now University). The Krause Family of West Salem made me feel welcome, even at my bitchiest. I was no picnic to live with. We started out at Roger and Luanne’s and eventually, Roberta, who lived alone at the time, was nice enough to let me be her roommate. Again, I was no picnic. I was newly diagnosed with Scleroderma, in a lot of pain and very hard to live with, yet Roberta still made me feel welcome. We folded laundry on her couch and she taught me how to make a great seafood Alfredo my son absolutely loves. The Krause Family continued to invite me over to holidays and make me feel welcome, even after Carl and I broke up. They made me feel like I had a family 2000 miles from home. (On a side note, Carl’s a great guy, but when you have two Scorpios together, it's the equivalent combining gasoline and a blowtorch- that and I was such a bitch!) I'm very grateful to all of them. They showed me just how great Wisconsin is. They taught me golf, football, introduced me lutefisk, how yummy hotdish is and about how important it is to wave to my neighbors. I will never forget their hospitality and I'm very grateful for getting the opportunity to know them. I'm very grateful to their son, Carl for telling me about La Crosse and sharing his family with me.
I haven't seen the Krause Family since 1999 after I moved back to California. I recently found Leora and Roberta on Facebook and have kept in touch with them through wall postings and picture sharing. They have also been very generous contributors to the Scleroderma Foundation and have sponsored me and my son on our walks since we have regained contact.
In 2008, Roberta and her mom Luanne were both diagnosed with breast cancer. Luanne is done with her treatment and doing well. Roberta has not been so lucky. The cancer has metastasized and moved into her bones, called Metastatic Breast Cancer. This is often not diagnosed until stage IV. Metastatic cancer is often considered incurable, but there are many survivors.
Roberta has the support of her family and friends but she is in the fight of her life. This blog isn't just about Scleroderma and Sarcoidosis, it's about being human. All diseases are bad. If one disease comes closer to a cure or treatment, the research and information has a ripple effect that will help the research of others. No matter how small, progress is progress.
Everyone knows someone who has been touched by cancer. Help Roberta and her team exceed their goal of $300.00. Sponsor Roberta for the Steppin' Out in Pink Walk, Saturday, September 11. Pitch in what you can. Every donation makes a difference. If 20 people donate $5.00 each, that’s $100.00. Every dollar counts.
Thank you for taking the time to read about a family who really made a difference in my life. Thank you in advance for making a generous donation to fund research, patient support, effective treatment and one day a cure for one more horrible disease.
Roberta's Page
More about Metastatic Breast Cancer
A Survivor's Story
METS Matters Blog
Gunderson Lutheran Medical Foundation
Join Steppin Out In Pink on Face Book
Speak to a Survivor: 1-866-891-2392
I haven't seen the Krause Family since 1999 after I moved back to California. I recently found Leora and Roberta on Facebook and have kept in touch with them through wall postings and picture sharing. They have also been very generous contributors to the Scleroderma Foundation and have sponsored me and my son on our walks since we have regained contact.
In 2008, Roberta and her mom Luanne were both diagnosed with breast cancer. Luanne is done with her treatment and doing well. Roberta has not been so lucky. The cancer has metastasized and moved into her bones, called Metastatic Breast Cancer. This is often not diagnosed until stage IV. Metastatic cancer is often considered incurable, but there are many survivors.
Roberta has the support of her family and friends but she is in the fight of her life. This blog isn't just about Scleroderma and Sarcoidosis, it's about being human. All diseases are bad. If one disease comes closer to a cure or treatment, the research and information has a ripple effect that will help the research of others. No matter how small, progress is progress.
Everyone knows someone who has been touched by cancer. Help Roberta and her team exceed their goal of $300.00. Sponsor Roberta for the Steppin' Out in Pink Walk, Saturday, September 11. Pitch in what you can. Every donation makes a difference. If 20 people donate $5.00 each, that’s $100.00. Every dollar counts.
Thank you for taking the time to read about a family who really made a difference in my life. Thank you in advance for making a generous donation to fund research, patient support, effective treatment and one day a cure for one more horrible disease.
Roberta's Page
More about Metastatic Breast Cancer
A Survivor's Story
METS Matters Blog
Gunderson Lutheran Medical Foundation
Join Steppin Out In Pink on Face Book
Speak to a Survivor: 1-866-891-2392
Friday, August 20, 2010
Normal Mom
Happy Friday Everyone:-)
First, I want to apologize to those with Sarcoidosis for not mentioning I have it in the following story about my son. Scleroderma is more noticable in me and this is the true story. I'm not sure if mentioning one disease to my son at a time is the right idea, but 2 seems a lot for a 6 year old to handle. I haven't quite figured out how to tell him that part of it. I will keep you posted. Really, I think Scleroderma would be interchangable with any disease in my story. One disease isn't worse than the other. They ALL suck.
I posted a picture on Face Book of myself holding my son. The reason- I always felt self conscious when holding him the way I had to because of the condition of my fingers. I’m still self conscious, but I’ve come to a place where it no longer bothers me. The self consciousness is more like- stare if you want, I’m busy.
Before I had my son, I had stopped touching other people except for handshakes. I’m completely the opposite about handshakes. I love sticking my hand out just to watch someone’s reaction. Cheap entertainment for me, but I digress. My interest in touching stopped sometime in the 90’s. I’m not sure when, but one day I just stopped touching people. I shake hands when I meet people, but anything close or intimate- not so much. Simple things like putting a hand on the shoulder of a friend when she was crying or upset felt useless or fake to me. I was much better with hugs.
I didn’t really notice my aversion to touching others until the first time I held my son. I picked him up so awkwardly, I was afraid I was going to drop him. I touched him, and my heart broke when I realized I could touch him with my knuckles, not my fingertips. There are ways I could touch him with my fingertips, but to pick him up or hold him, I had to use my knuckles. I never missed touching anything until then. I became worried I wouldn't be able to do the things a normal mom could do. I became depressed about it and didn't even realize my behavior had changed. I was told constantly by friends, family, my son's pediatrician, and my shrink how good a job I was doing at being a mom but I just wouldn't buy it.
Now that my son is 6, I look back and here's what I do know and I want every mom to know, disabled or not. There is no such thing as a normal mom. I thought my son was adapting to my disabilities, but the truth is he didn't have to adapt to anything because I'm the only mom he knows. There was so much I put into my head about what I couldn't do, I forgot that there was so much I could do, especially in public. I made myself feel like a freak show and would miss out on simple activities so I wouldn’t draw attention to myself.
Kids don't judge. My son never thought anything was wrong with me. I allowed my mind to make a bigger deal out of things than they were. Every parent has something different about them. It could be hard to spot or in plain sight, but there's always something. Sure, disabled parents
have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will scare you right out of your shoes
(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) Wanda Sykes used to talk about what parents told her about having kids, "yeah... but there worth it." She had no children at the time and called it a conspiracy by parents to recruit more parents. She was right. I think if all parents knew exactly how tough it was to be a parent, the human race would've been extinct a long time ago.
Now, I'd be making a huge omission if I did not mention my son noticed my hands were different at a very young age. I think it was before he could talk. He would take one of my hands and try to straighten them. Sometimes he would catch me off guard and it would hurt like hell. I would gently loosen his grip and tell him, "Mommy's hands don't work that way." His curiosity was satisfied with such a simple answer he would move on to something else. As he got older, he started asking questions. The answers started out simply "That's just the way Mommy's hands are" then became, "Mommy has Scleroderma.", followed by a simple explaination. Once he had that 75 cent word in his vocabulary, the questions became more complex, but at weird times. It was actually kind of funny watching him wrap his head around it. This was a typical conversation,
"I need to sit on the couch, this floor is not very comfortable."
He'd ask, "Mommy, is it because you have Scleroderma?"
"No Honey, it's because the floor is cold and hard."
About Scleroderma, I kept my answers simple and honest. I did not want to worry or lie to him, but simple worked well and still works today. That short attention span kids have really comes in handy sometimes.
When he was 5, I laid it all out for him. I sat him down and explained Scleroderma the best that I could and made sure he knew I was going to be okay, no matter what. It took him a while to process it, but I think he understood then and understands it now as best as any 6 year old can.
Short story long, I posted the picture because a person with finger contractures holding their kid with no make up on (Warning) is rarely seen. So there you go. Check it out. Parenting
Thanks for reading.
For more reading:
Parenting and Disability: Disabled Parents' Experiences of Raising Children
(I haven't read this yet, I just found it on Amazon. If anyone has read it, leave a comment about it. Thanks)
Foundation for Sarcoid Research
Scleroderma Foundation
Scleroderma Research Foundation
First, I want to apologize to those with Sarcoidosis for not mentioning I have it in the following story about my son. Scleroderma is more noticable in me and this is the true story. I'm not sure if mentioning one disease to my son at a time is the right idea, but 2 seems a lot for a 6 year old to handle. I haven't quite figured out how to tell him that part of it. I will keep you posted. Really, I think Scleroderma would be interchangable with any disease in my story. One disease isn't worse than the other. They ALL suck.
I posted a picture on Face Book of myself holding my son. The reason- I always felt self conscious when holding him the way I had to because of the condition of my fingers. I’m still self conscious, but I’ve come to a place where it no longer bothers me. The self consciousness is more like- stare if you want, I’m busy.
Before I had my son, I had stopped touching other people except for handshakes. I’m completely the opposite about handshakes. I love sticking my hand out just to watch someone’s reaction. Cheap entertainment for me, but I digress. My interest in touching stopped sometime in the 90’s. I’m not sure when, but one day I just stopped touching people. I shake hands when I meet people, but anything close or intimate- not so much. Simple things like putting a hand on the shoulder of a friend when she was crying or upset felt useless or fake to me. I was much better with hugs.
I didn’t really notice my aversion to touching others until the first time I held my son. I picked him up so awkwardly, I was afraid I was going to drop him. I touched him, and my heart broke when I realized I could touch him with my knuckles, not my fingertips. There are ways I could touch him with my fingertips, but to pick him up or hold him, I had to use my knuckles. I never missed touching anything until then. I became worried I wouldn't be able to do the things a normal mom could do. I became depressed about it and didn't even realize my behavior had changed. I was told constantly by friends, family, my son's pediatrician, and my shrink how good a job I was doing at being a mom but I just wouldn't buy it.
Now that my son is 6, I look back and here's what I do know and I want every mom to know, disabled or not. There is no such thing as a normal mom. I thought my son was adapting to my disabilities, but the truth is he didn't have to adapt to anything because I'm the only mom he knows. There was so much I put into my head about what I couldn't do, I forgot that there was so much I could do, especially in public. I made myself feel like a freak show and would miss out on simple activities so I wouldn’t draw attention to myself.
Kids don't judge. My son never thought anything was wrong with me. I allowed my mind to make a bigger deal out of things than they were. Every parent has something different about them. It could be hard to spot or in plain sight, but there's always something. Sure, disabled parents
have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will scare you right out of your shoes(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) Wanda Sykes used to talk about what parents told her about having kids, "yeah... but there worth it." She had no children at the time and called it a conspiracy by parents to recruit more parents. She was right. I think if all parents knew exactly how tough it was to be a parent, the human race would've been extinct a long time ago. Now, I'd be making a huge omission if I did not mention my son noticed my hands were different at a very young age. I think it was before he could talk. He would take one of my hands and try to straighten them. Sometimes he would catch me off guard and it would hurt like hell. I would gently loosen his grip and tell him, "Mommy's hands don't work that way." His curiosity was satisfied with such a simple answer he would move on to something else. As he got older, he started asking questions. The answers started out simply "That's just the way Mommy's hands are" then became, "Mommy has Scleroderma.", followed by a simple explaination. Once he had that 75 cent word in his vocabulary, the questions became more complex, but at weird times. It was actually kind of funny watching him wrap his head around it. This was a typical conversation,
"I need to sit on the couch, this floor is not very comfortable."
He'd ask, "Mommy, is it because you have Scleroderma?"
"No Honey, it's because the floor is cold and hard."
About Scleroderma, I kept my answers simple and honest. I did not want to worry or lie to him, but simple worked well and still works today. That short attention span kids have really comes in handy sometimes.
When he was 5, I laid it all out for him. I sat him down and explained Scleroderma the best that I could and made sure he knew I was going to be okay, no matter what. It took him a while to process it, but I think he understood then and understands it now as best as any 6 year old can.
Short story long, I posted the picture because a person with finger contractures holding their kid with no make up on (Warning) is rarely seen. So there you go. Check it out. Parenting
Thanks for reading.
For more reading:
Parenting and Disability: Disabled Parents' Experiences of Raising Children
(I haven't read this yet, I just found it on Amazon. If anyone has read it, leave a comment about it. Thanks)Foundation for Sarcoid Research
Scleroderma Foundation
Scleroderma Research Foundation
Thursday, July 15, 2010
Can I Do This?
That's the question I asked myself Wednesday morning after waking up tired. Before I woke up, I was dreaming I was getting ready to go to sleep after a long night helping my best friend from high school rescue her child from a werewolf kidnapper. It turns out he only wanted to celebrate Christmas with us. I don’t really care what that dream means. I just wish I would remember those insightful dreams that leave me with thought provoking solutions that I usually forget 30 seconds after I’m awake. I know I'm supposed to write these down, but that would be WORK.
Speaking of work... (Call me Queen Segue) I started a part time job doing bookkeeping services for a local business. I haven't worked steadily for 2 years. I had grown accustomed to showering late mornings after my coffee and work out. Since July 1st, It's get up, shower, get dressed, have breakfast and get to work. I am enjoying my new job. The people are great and I am learning so much related to bookkeeping.
On the surface, it's great, but I have a concern lurking in my mind regarding my commitment to my new responsibility. It is only part time. My employer is very willing to be flexible with my schedule regarding doctor's appointments. He must be very willing to work with me because on my 3rd day I had to call in sick. Two years ago, I practically worked myself to death, but I did own my own business and have a failing marriage. Now I'm working part time for someone else and have a very happy and fulfilling personal life. My goal is to find balance. Changing my thinking of finding balance instead of just, "Can I do this?" reminded me quitting is not the answer. If I don't try, I've already failed. So I'm giving it a go.
So far, I have been pretty tired. Fatigue has been hitting me hard. I don't want to give up yet because it is still early and maybe my body needs to adjust. I will be working 4 days. I am thinking of changing my day off to Thursday, so I can take it easy and finish off the week with enough energy to enjoy my weekend. Plus, with the extra income I will be able to afford regular massages and pedicures. Massages and pedicures may sound a bit indulgent, but I have found a great deal of pain relief with regular visits to my massage therapist. A pedicure once a month helps my circulation and the massage also helps with foot pain. The more I think about it, the more I feel I’m making the right decision. Again, it is early and I need to give myself time to balance between my health and work. I know balance is possible and necessary to succeed; I just need to find it.
Recommended reading:
Pedicure Safety
Inner Peace for Busy People
Foundation for Sarcoidosis Research
Scleroderma Foundation
Speaking of work... (Call me Queen Segue) I started a part time job doing bookkeeping services for a local business. I haven't worked steadily for 2 years. I had grown accustomed to showering late mornings after my coffee and work out. Since July 1st, It's get up, shower, get dressed, have breakfast and get to work. I am enjoying my new job. The people are great and I am learning so much related to bookkeeping.
On the surface, it's great, but I have a concern lurking in my mind regarding my commitment to my new responsibility. It is only part time. My employer is very willing to be flexible with my schedule regarding doctor's appointments. He must be very willing to work with me because on my 3rd day I had to call in sick. Two years ago, I practically worked myself to death, but I did own my own business and have a failing marriage. Now I'm working part time for someone else and have a very happy and fulfilling personal life. My goal is to find balance. Changing my thinking of finding balance instead of just, "Can I do this?" reminded me quitting is not the answer. If I don't try, I've already failed. So I'm giving it a go.
So far, I have been pretty tired. Fatigue has been hitting me hard. I don't want to give up yet because it is still early and maybe my body needs to adjust. I will be working 4 days. I am thinking of changing my day off to Thursday, so I can take it easy and finish off the week with enough energy to enjoy my weekend. Plus, with the extra income I will be able to afford regular massages and pedicures. Massages and pedicures may sound a bit indulgent, but I have found a great deal of pain relief with regular visits to my massage therapist. A pedicure once a month helps my circulation and the massage also helps with foot pain. The more I think about it, the more I feel I’m making the right decision. Again, it is early and I need to give myself time to balance between my health and work. I know balance is possible and necessary to succeed; I just need to find it.
Recommended reading:
Pedicure Safety
Inner Peace for Busy People
Foundation for Sarcoidosis Research
Scleroderma Foundation
Monday, January 11, 2010
Bracelets
I think it’s a given we want the world rid of diseases and the discomfort and pain of others to be relieved, but do we have to wear a rubber bracelet to prove it?
Why can’t we just make a donation, get a receipt and be on our way? I took notice of my beautiful blue bracelet for Scleroderma Awareness and it just struck a nerve with me this morning. My friends and family don’t need a bracelet to make them “aware” of Scleroderma.
The roots of the bracelet go back to the AIDS ribbon. I can’t knock that. I think it got everyone’s attention, it was cloth so it was biodegradable and there was no multi-million dollar business behind the mass production of the ribbons. You just took a ribbon, made a loop and stuck a pin through it. Now we have bracelets for everything. As far as the bracelets go, the only one I can really stand behind is Steven Colbert’s Wrist Strong Bracelet because it raises awareness about wrist injuries and bracelet only seems practical.
So let’s make a deal. I agree to donate money to causes that offer bracelets, but will not take delivery of said bracelets, because when I die these bracelets can take a year to break down. Oh wait, that's not that long, but still, do I really need a rubber bracelet? Besides, my son already thinks I'm a goofball, why prove it by leaving him a pile of rubber bracelets? I suppose I could save him a trip to the garbage after I drop dead.
Want to help raise funds for Scleroderma Awareness? Check out www.scleroderma.org and buy something besides a bracelet or make a donation. If you really need a bracelet, go to Avon and help support my spa habit and help the environment by improving my appearance.
Why can’t we just make a donation, get a receipt and be on our way? I took notice of my beautiful blue bracelet for Scleroderma Awareness and it just struck a nerve with me this morning. My friends and family don’t need a bracelet to make them “aware” of Scleroderma.
The roots of the bracelet go back to the AIDS ribbon. I can’t knock that. I think it got everyone’s attention, it was cloth so it was biodegradable and there was no multi-million dollar business behind the mass production of the ribbons. You just took a ribbon, made a loop and stuck a pin through it. Now we have bracelets for everything. As far as the bracelets go, the only one I can really stand behind is Steven Colbert’s Wrist Strong Bracelet because it raises awareness about wrist injuries and bracelet only seems practical.
So let’s make a deal. I agree to donate money to causes that offer bracelets, but will not take delivery of said bracelets, because when I die these bracelets can take a year to break down. Oh wait, that's not that long, but still, do I really need a rubber bracelet? Besides, my son already thinks I'm a goofball, why prove it by leaving him a pile of rubber bracelets? I suppose I could save him a trip to the garbage after I drop dead.
Want to help raise funds for Scleroderma Awareness? Check out www.scleroderma.org and buy something besides a bracelet or make a donation. If you really need a bracelet, go to Avon and help support my spa habit and help the environment by improving my appearance.
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