The past three Saturdays, I have witnessed three couples parted by death far too soon. Their ages ranging from 58 to 68, not young- but unfinished lives, taken from us too soon, leaving us all wanting for more.
It's a strong reminder of my own mortality and how much I take for granted time I do have. This is nothing new or groundbreaking. What amazed me most was the strength I saw in the spouses and children of those laid to rest. Strength brought on by shock and pain, a survival skill that gets the departed laid to rest.
Monday, February 8, 2010
Monday, January 25, 2010
To Breed or Not to Breed
I'm trying not to make this a Scleroderma/Sarcoidosis blog, but I wanted to republish this piece for those who don't have this information.
To Breed, or Not to Breed
It doesn't matter if you have Scleroderma, another debilitating chronic disease or even a hangnail. This is an important question that all parents to be should consider, not just disabled women considering pregnancy. And only those deciding whether or not to have a baby have the right answer. There is an entire industry out there based on our fears of what to expect and how to avoid being a "bad" parent. Recently I read this wonderful book called, The Disabled Woman's Guide to Pregnancy and Birth. I have been putting off writing this entry until I finished this book; but it's a large book with a wealth of information and I wanted to get this information out right away. None of the participants interviewed had Scleroderma, Sarcoidosis or a hangnail but many of the women interviewed shared many of the same concerns, hopes and fears. So far, it has been the best parenting and childbirth book I have ever read. I found it at the library. If your library does not have it, the librarian can request it from other locations. The book can be purchased, but check it out at the library first before spending money. If it is in your budget, it's worth the investment. If you decide to purchase the book, at the end of this entry is a link.
I have no plans to have any more children. But I am so relieved this information is out there for all disabled women. With the increasing number of wounded and disabled women returning from Iraq and Afghanistan, this book will be a valuable tool. I do wish The Disabled Woman's Guide to Pregnancy and Birth, existed when I was pregnant. The women in this book had many of the same fears and questions as I did. I felt the overall message of the book was no matter what medical condition a disabled woman has, as long as she has a great professional relationship with her high risk OBGYN, primary specialist and all professional caregivers (I like to refer to as "The Team"), her chances of having a healthy pregnancy are just as good as any "able-bodied" woman. Granted, there is much more involved with chronic illnesses such as Scleroderma , but the bottom line to me was, knowledge is power, fear keeps us alert, family (parents siblings, in-laws) can make us crazy and sometimes give advice based on their needs, not yours. The best message I saw in this book was, the ONLY people the disabled woman should listen to when making this decision to most is herself, her partner and doctor(s). Deciding to become a parent is such a personal thing. Friends and family are never shy to give advice, solicited or not, and there is a wealth of information for disabled women and the professionals who work with them in The Disabled Woman's Guide to Pregnancy and Birth. Another great source is any patient conferences and seminars. I was lucky enough to attend my first Scleroderma Conference in 2008 and found a wealth of information about pregnancy from Elaine Furst, who gave the workshop on Scleroderma and Sexuality at a conference i attended. I also met a couple who was planning their family's future before beginning to have children. I really admired how in tune with one another they appeared and the obvious commitment to each other to make sure they were well informed to make such a big decision. Most pregnancies happen before the research can be done, and if this is the case for anyone reading this, don't panic. Remain calm, we humans have been at this whole reproduction thing for a while, we're designed for it and as long as a woman has a good high risk medical team on board and is monitored closely, there is a chance for a successful pregnacy. Two things to remember; A successful pregnancy is not uneventful and nothing worth having ever comes without risks and with that comes the possibility of some very tough decisions. Be sure to discuss all concerns with your OBGYN and specialist.
The Disabeld Woman's Guide to Pregnancy and Birth can be found on Amazon for $22.76,
Read about Scleroderma and pregnancy from the Scleroderma Foundation, Click here
To Breed, or Not to Breed
It doesn't matter if you have Scleroderma, another debilitating chronic disease or even a hangnail. This is an important question that all parents to be should consider, not just disabled women considering pregnancy. And only those deciding whether or not to have a baby have the right answer. There is an entire industry out there based on our fears of what to expect and how to avoid being a "bad" parent. Recently I read this wonderful book called, The Disabled Woman's Guide to Pregnancy and Birth. I have been putting off writing this entry until I finished this book; but it's a large book with a wealth of information and I wanted to get this information out right away. None of the participants interviewed had Scleroderma, Sarcoidosis or a hangnail but many of the women interviewed shared many of the same concerns, hopes and fears. So far, it has been the best parenting and childbirth book I have ever read. I found it at the library. If your library does not have it, the librarian can request it from other locations. The book can be purchased, but check it out at the library first before spending money. If it is in your budget, it's worth the investment. If you decide to purchase the book, at the end of this entry is a link.
I have no plans to have any more children. But I am so relieved this information is out there for all disabled women. With the increasing number of wounded and disabled women returning from Iraq and Afghanistan, this book will be a valuable tool. I do wish The Disabled Woman's Guide to Pregnancy and Birth, existed when I was pregnant. The women in this book had many of the same fears and questions as I did. I felt the overall message of the book was no matter what medical condition a disabled woman has, as long as she has a great professional relationship with her high risk OBGYN, primary specialist and all professional caregivers (I like to refer to as "The Team"), her chances of having a healthy pregnancy are just as good as any "able-bodied" woman. Granted, there is much more involved with chronic illnesses such as Scleroderma , but the bottom line to me was, knowledge is power, fear keeps us alert, family (parents siblings, in-laws) can make us crazy and sometimes give advice based on their needs, not yours. The best message I saw in this book was, the ONLY people the disabled woman should listen to when making this decision to most is herself, her partner and doctor(s). Deciding to become a parent is such a personal thing. Friends and family are never shy to give advice, solicited or not, and there is a wealth of information for disabled women and the professionals who work with them in The Disabled Woman's Guide to Pregnancy and Birth. Another great source is any patient conferences and seminars. I was lucky enough to attend my first Scleroderma Conference in 2008 and found a wealth of information about pregnancy from Elaine Furst, who gave the workshop on Scleroderma and Sexuality at a conference i attended. I also met a couple who was planning their family's future before beginning to have children. I really admired how in tune with one another they appeared and the obvious commitment to each other to make sure they were well informed to make such a big decision. Most pregnancies happen before the research can be done, and if this is the case for anyone reading this, don't panic. Remain calm, we humans have been at this whole reproduction thing for a while, we're designed for it and as long as a woman has a good high risk medical team on board and is monitored closely, there is a chance for a successful pregnacy. Two things to remember; A successful pregnancy is not uneventful and nothing worth having ever comes without risks and with that comes the possibility of some very tough decisions. Be sure to discuss all concerns with your OBGYN and specialist.
The Disabeld Woman's Guide to Pregnancy and Birth can be found on Amazon for $22.76,
Read about Scleroderma and pregnancy from the Scleroderma Foundation, Click here
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.
Thursday, January 7, 2010
Castrated Hearts
Let me tell you about a great book I got today. It's called, Castrated Hearts, Post Traumatic Disorder Through the Voices of Military Veterans. This book is an anthology of poetry written by American Veterans. I am inspired by their amazing poetry and this book made me laugh, think, cry and reminded me of the true cost of war. If you really want to see the faces and hearts of bravery and honor, you need to read this book.
Get your copy, go to Castrated Hearts on amazon.com
Get your copy, go to Castrated Hearts on amazon.com
Wednesday, January 6, 2010
Not Yet Back
Happy New year Everyone!
Hope everyone found some bit of joy over this holiday season. I found lots of inspiration to write, but have yet to put down a word for no other reason except that I'm still unpacking from a great two-weeks.
So in the spirit of "Coffee Talk" and the whole here's a topic-discuss, if you are craving something bloggish and obscene to read I suggest checking out The Rude Pundit. I caught his "Final F-off" to the decade while eating lunch today and rather than be jealous of his thinking up some things first, I'll share, because sharing is nice. He had some interesting things to say about the Underpants Bomber, I scrolled past the Haiku section and read the final F-offs. This is not for the faint, so if you are easily offended, you may want to just skip it watch a clip of "Coffee Talk". So check a couple things out and discuss amongst yourselves. Now it's back to unpacking and opening up mail.
Thanks for taking the time to read my blog today. Have a good one.
Hope everyone found some bit of joy over this holiday season. I found lots of inspiration to write, but have yet to put down a word for no other reason except that I'm still unpacking from a great two-weeks.
So in the spirit of "Coffee Talk" and the whole here's a topic-discuss, if you are craving something bloggish and obscene to read I suggest checking out The Rude Pundit. I caught his "Final F-off" to the decade while eating lunch today and rather than be jealous of his thinking up some things first, I'll share, because sharing is nice. He had some interesting things to say about the Underpants Bomber, I scrolled past the Haiku section and read the final F-offs. This is not for the faint, so if you are easily offended, you may want to just skip it watch a clip of "Coffee Talk". So check a couple things out and discuss amongst yourselves. Now it's back to unpacking and opening up mail.
Thanks for taking the time to read my blog today. Have a good one.
Wednesday, December 16, 2009
WTF-Ville
I have been told my whole life that God has a plan. That we are here on earth preparing for the afterlife and everything happens for a reason. As I child, I went to bed every night afraid I “would die before I wake”. Until I was twelve, I tucked in my four stuffed animals and would lay down between them and the wall in my twin bed. Maybe I thought angels would take my stuffed animals instead of me. I did the sign of the cross, and silently said an Our Father, Hail Mary, Act of Contrition and asked God to bless everyone I could think of. On days I got in trouble, I would say a rosary- which was usually every day. After years of soul searching, nights of drunken stupors, years of angry words and of course, spending the 4th grade with bat-shit crazy Sister Kathleen, I have come to the conclusion the plan is- there is no plan. I had to accept anything can happen and I live in WhatTheFuck?-ville, Planet Earth.
Ten years later in 1992, the first signs appeared. They asked if I got regular periods. Several doctors at Balboa Naval Hospital told me this was all in my head, that I drank too much caffeine and maybe I need to quit taking birth control pills, (because nothing is more hazardous than preventing pregnancy-right?). Then, in 1994 at the VA in Madison Wisconsin, I was diagnosed with Scleroderma. Three months later I could almost pronounce it and one year later I could spell it (Denial? -oh hell ya).
I was in nursing school at the time and one of my textbooks had an exquisite picture of what Scleroderma could do to my hands. Crying hysterically I called my ex-boyfriend. I think anyone who saw this picture would have found it horrifying. Today I look at my curled fingers and frozen hands and laugh about how my ex-boyfriend told me I was being paranoid.
I have been to dozens of doctors. I have been prescribed “homeopathic” and “Natural
Remedies”, only to have them make my condition worse. For some reason it felt empowering to go ‘off the grid’ of western medicine. It made me feel in control. Before moving to WhatTheFuck?-ville, I made Denial my home.
I don’t waste my energy on anger and have no time for depression. I gave up on bargaining. Denial is my greatest defense mechanism and acceptance is not an option. Every now and then one of the five stages of grief worm their way into my head. Fourteen years, is that too long to be in therapy? What’s the anniversary gift for 15?
I am told that God has a plan and everything happens for a reason. I disagree. If he does exist; he created us followed by a series of random events he thought he could control. That’s no plan- he’s just as confused as I am. If he does exist, we are most likely floats in a terrarium he keeps in his office where he resides in WhatTheFuck?-ville, Universe, where he sits at his desk and procrastinates about writing poetry. Just like me.
Additional Links: CREST Syndrome
Elisabeth Kubler-Ross
Ten years later in 1992, the first signs appeared. They asked if I got regular periods. Several doctors at Balboa Naval Hospital told me this was all in my head, that I drank too much caffeine and maybe I need to quit taking birth control pills, (because nothing is more hazardous than preventing pregnancy-right?). Then, in 1994 at the VA in Madison Wisconsin, I was diagnosed with Scleroderma. Three months later I could almost pronounce it and one year later I could spell it (Denial? -oh hell ya).
I was in nursing school at the time and one of my textbooks had an exquisite picture of what Scleroderma could do to my hands. Crying hysterically I called my ex-boyfriend. I think anyone who saw this picture would have found it horrifying. Today I look at my curled fingers and frozen hands and laugh about how my ex-boyfriend told me I was being paranoid.
I have been to dozens of doctors. I have been prescribed “homeopathic” and “Natural
Remedies”, only to have them make my condition worse. For some reason it felt empowering to go ‘off the grid’ of western medicine. It made me feel in control. Before moving to WhatTheFuck?-ville, I made Denial my home.
I don’t waste my energy on anger and have no time for depression. I gave up on bargaining. Denial is my greatest defense mechanism and acceptance is not an option. Every now and then one of the five stages of grief worm their way into my head. Fourteen years, is that too long to be in therapy? What’s the anniversary gift for 15?
I am told that God has a plan and everything happens for a reason. I disagree. If he does exist; he created us followed by a series of random events he thought he could control. That’s no plan- he’s just as confused as I am. If he does exist, we are most likely floats in a terrarium he keeps in his office where he resides in WhatTheFuck?-ville, Universe, where he sits at his desk and procrastinates about writing poetry. Just like me.
Additional Links: CREST Syndrome
Elisabeth Kubler-Ross
Monday, December 14, 2009
Left Behind
My train of though left without me this morning. So, I thought I would use this time to post some helpful links for Scleroderma.
Scleroderma.org
Become a friend to The Scleroderma Founadtion on Facebook
Scleroderma on FaceBook
There is a great tip on FB about Raynaud's and making meatloaf.
So check it out, learn something and have a great Monday!
-
Karen
PS: Behind on Christmas shopping? Shop at Avon Online and have it sent to you in days. (Spa bills people:-)
Scleroderma.org
Become a friend to The Scleroderma Founadtion on Facebook
Scleroderma on FaceBook
There is a great tip on FB about Raynaud's and making meatloaf.
So check it out, learn something and have a great Monday!
-
Karen
PS: Behind on Christmas shopping? Shop at Avon Online and have it sent to you in days. (Spa bills people:-)
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