Imagination, A Nice Place to Visit....

I have made a commitment to myself to write at least 10 minutes a day. It doesn't sound like much but I'm having a real time management problem. It's nothing new, I've had a time management problem my whole life. I'm going to be 40 in November and there's no excuse for it. I'm still in denial of even having a time management problem. I used to set my clocks ahead 15 minutes trying to fool myself into arriving early. Who was I fooling here, really? Fool, that's the key word here. Tricking MYSELF? As they say in Minnesota, "Yoou bet'cha!"
Here's how it would go: Already running behind, I would get behind the wheel. Eyes on the road I would glance at my clock, back at the road, then at my speedometer, triggering my inner voice, sounding very similar to Golem's. The only thing missing was replacing the word "somehow" with "tricksies"
I can shave a minute or two off my time by going one or two miles over the speed limit. I am somehow bending the time-space continuum. Yes, yes... Shhh. Stop over thinking- it's working. As long as I believe it, it's true. Shhh.
Oh yeah, that worked in my head, but never really played out in reality. Imagination. A nice place to visit, not a place to live.

Monday

Well, today I start back to work. I'm doing customer service for a business my grandfather started in 1985. My ex-husband has been"running" things and it's time for me to step up and help improve sales and customer service.

I have been out of it for over a year now and I am ready to work, but I am having trouble finding that drive I had. I think it was called youth!

Naming My Elephants

Since I changed the name, thought it would be a great time to give my definitions of Scleroderma and Sarcoidosis.
Today, let's talk about Scleroderma. There are so many better definitions than mine, but here goes. It's an autoimmune disease that causes an overproduction of collagen resulting in lots and lots of scar tissue. What is an autoimmune disease? Well, every autoimmune disease manifests itself differently so I will use some familiar references.
An autoimmune disease is some type of reaction with no know cause, where your body doesn't recognize and attacks it's own healthy cells. Remember the end of Scarface where tony Montoya was saying hello to everybody with his little "friend"? He takes out his sister and his best friend -those he needs the most, but he's so coked out he doesn't recognize they are truly the only people who love him. That's the autoimmune disease. All coked out and killing everything important to the body.

I just found a great website about autoimmunity. I'm still checking it out and I would love to hear any feedback from anyone who has visited this site.
aarda.org

My Elephants in the Room

No, I'm not having a mid-life identity crisis, I just changed the name of my blog. This is supposed to be about my own experiences and these experiences usually have to do with my symptoms of Scleroderma and Sarcoidosis. Those diseases are not my identity, but my elephants in the room. My elephants effect my everyday experiences as complicated as parenting, going through an ugly divorce or just getting dressed. Thank you for continuing to read my blog.

Unfinished Lives

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.

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

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.