Does This Stick Make My Butt Look Big?

Do you ever have one of those days where nothing is funny? Everything feels inappropriate? And you just want your own ideas to work and any criticism of them is an attack on your reason for existance? Today is one of those days for me. So, I'm working hard to pull out that stick I have up my butt today. I'll be doing some yoga later. I don't have a specific story- or at least one I want to share on the internet. Maybe this is attention seeking behavior? I'm only posting my thoughts on the internet. Doesn't everyone want to know my thoughts and opinions? Seriously what is up with my blogging? Why is it I want to convey to the world that I too wish to know how to say "soup of the day in Latin"? Maybe I'm just jealous Stephen Colbert could come up with a joke using Latin or King Tut's Penis and I can't think of anything funny about a goofy GI system. Seriously- that should write itself. All this and I completely forgot about the complementary medicine teleseminar put on by the Scleroderma Foundation. I'm really slacking here. So I'm off to remove this stick and somehow grow my sense of humor back with some yoga- or Ben and Jerry's. OMG have you tried Americone Dream? I can't get enough of that waffle cone goodness. Oh man it's Stephen Colbert's flavor. I am vexed- COLBERT!!!

Taste the Truthiness
Could it save your life?
Still can't get enough? It's on FaceBook for Ra's Sake!

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

A Hole and Border Patrol

I would like to send a big shout out to the Border Patrol Officers who helped me last night. It was 10:30pm and I thought I had at least 20 more miles left in my gas tank, but I was very wrong. Luckily, my car died right in front of a Border Patrol Check Point. The Officers hooked me up with some fuel to get me the next 5 miles to the nearest gas station. They were helpful, friendly and while waiting I had front row seats as they pulled one tweaker over after another during a surprise checkpoint stop. Drug addiction is a horrible disease, but you have to find the humor in the silly way some adults will try to fool someone sober into thinking they are not high.
Thanks Officers for the help- and the show!!

One of the reasons I routinely play chicken with my gas tank is because I need assistance pumping gas into my car. It gets messy and I can’t open my gas cap with my contractured fingers. I don't know if its pride or stupidity, but I hate going to gas stations and asking for help. I would pay for full serve, but to get that I would have to go to Wisconsin or Beverly Hills (seriously). I have regular stations I go to locally where I know people and they are always happy to help, but at night attendants are usually alone and I hate asking even more. I know it's no excuse for doing something as stupid as playing chicken with my gas tank, but I wanted to explain.

And now, a gross story about my elbow, enjoy...
So, yesterday while sitting at a stoplight in my car. I bumped my elbow on my arm rest right on a dried out sore. I took a look at it in my rear view mirror and saw a hole in place of the sore. Sounds gross right? Well, there was no blood or fluid of any kind. just a perfectly round hole. It looked like someone took a one sided hole punch to my elbow. There was live healthy skin in the depression and healthy tissue around the circumference of my sore. It doesn't even hurt. So, I'm just going to keep an eye on it and keep it clean. It sounds crazy to me but I just had to tell someone. I hope you weren’t eating when you read this.

Common Treatment for pressure sores
Picture of Digital Ulcer
More about Digital Ulcers
Wound Care (Do not click on the pictures they are a bit gross, but the article is good)
ALWAYS consult your physician about the care and treatment of your own digital ulcers. These articles and links are provided as information only.

Big Changes for my Little Guy

I guess he's not so little anymore. He starts 1st grade tomorrow. I rearranged his room. We went to the store last night and I gave him a budget to buy toys. He picked them out, we brought them home and he got to open one. The rest he will get to play with AFTER he goes through his toys and picks out what he does not play with anymore. The, "I'll buy you new toys" thing no longer works. My little ADHD guy needs to see the toys as a reminder when he looses interest in cleaning- which is about every 20 minutes. When he gives up, he goes to the kitchen table, asks me if he can open them,I remind him to get back on task and he does. We'll see how long this technique works.

A Few Changes

The School year starts for my son this week and every year at this time is a new beginning for me as well. When I was a kid, I never understood why the year ended in January, not the last weekend in summer. Here I am again, all grown up looking forward to a new year in August.

I'm not the one starting a new school year, but I still wanted to start something new. The obvious change is the design template of my blog. I'm not talented enough to design my own, so I picked this template. It seemed light. Then I removed my G ads. I left out the whole word because I don't want to get kicked off blog spot. I took off the ads because I was starting to worry I might see the, "Cure Scleroderma by eating a jar of mayonaise." ad. The only thing I will continue to plug are things I find helpful or interesting, like a book from Amazon, etc...

So, that's what I have so far. Some nice superficial changes. There's always room for growth and change. I'm not sure where to start, I'm staring from the outside and working my way in. If I get too nuts someone may have to remind me that my underwear goes on inside the pants. Then I know I've run out of ideas and should probably be reminded to get a meds check.

Stuff that caught my eye today...
Genuine Imitations By Phil Taylor
Tips on where I can get fiber from Stephen Colbert

Just One Study

My emotional rant yesterday did leave out a few things. First of all, any OT or health practitioner worth his/her salt will question any study. The study I sighted was important, but important to me. It showed something I was sure of was effective. How valid a study is, is the replication of that study. Many things touted as facts in our culture begin with statements like, "Studies show...", or "Some say...", or "They say...". I say, "What Studies?" "Who are They?" and "How do Some know?".

I have sent the study to my OT. I may need to find more studies about massage and it's effects on scar tissue- and that's okay. Anytime something is called into questions that I tout as fact, I hadv better make a case for it by doing my homework.

I'll blog about my progress next week. Right now, I've got some outdoors to get to.

Have a great weekend everyone!
Karen

Not Angry but Annoyed.

I was all set up for my OT to begin today and 40 minutes before my appointment my OT called to cancel. Her reason; she was unfamiliar with the study, she sounded a little iritated that my doctor had found "some study" and she was unsure the treatment was appropriate.

If there is a gold star for patience, I would've got mine during that phone call. I told her I was the one who found the study, not my doctor. I asked her for her email and I'm bringing in a hardcopy.

It's very hard not to take this sort of thing personally, but I don't. She's a great OT, but unfamiliar with Scleroderma. It's a very familiar wit most caregivers throughout my battle with Scleroderma. I'm trying to keep it in the VA because that's where I get my healthcare and funds are very tight. It's hard to find any practitioner within 120 miles who has worked with Scleroderma. My choice, get her the right info to get this going. I could try to take it to a different VA, but I do dread the thoght of the next service connected veteran to walk into that department with Scleroderma and being denied treatment. I also have to take into consideration two other factors.
1. She's at the VA and she has a ginormous case load with 2 wars going on- this is not her fault.
2. She always appeared apprehensive to touch my hands because of their scarred condition. This is her issue, but it's an ignorance issue. Ignorance can be treated with knowledge.

I have to scram. I have an another appointment in an hour so please forgive my typos and spelling errors. I just wanted to get this out before anyone else has this problem.

We can let ignorance trump hope.
Happy Friday everyone!

Breast Feeding

Why would I even care about Gisele Bundchen's opinion about breast feeding? Well, I have a horror story of my own about being bullied into spending hours with my "A" cups hooked up to an unmerciful motorized breast pump days after the 8 week premature birth of my son. And, there's also a possibility the blog will pop up in some search engine with the Gisele mention.

First, if you can breast feed, do it. I would have if I could. I support public breast feeding. The reality, not everyone can do it. In 2004, my son was born at 32 weeks. I had HELLP Syndrome and my organs were failing. The only cure was to end my pregnancy. So, my doctors delivered my son by C-section.

I never had that whole filling with breast milk that usually happens to pregnant women. In fact, my bra size only went up because of my increased circumference.

Long story short, a few days after delivering my son, a breast feeding nurse came in to counsel me. I guess she didn't read my chart because she tried to scare me by telling me, "Your child will be protected from getting certain autoimmune diseases if you breast feed." Being a breast fed child myself, the only thing stopping me from taking my IV stand and beating her with it were witnesses. My ex husband also threw in, "Honey, you're a mom now and your son has to come first. You have to try." or something like that. I was in the middle of a morphine induced haze while being given medication to get my blood pressure down from 200/99. (hence the term ex)

Once released from the hospital, I spent way too much time with the breast pump and after days of tears and stress with less than an ounce of breast milk to show for it, I stuck with the formula the NICU had been feeding my son. The stigma of not breast feeding your baby is beyond annoying. The time and stress I put upon myself could've been better spent with my son in the NICU.

My son is now a healthy six year old about to start first grade. Not having breast milk has not impeded his development. He is short because he was 8 weeks premature and I am very lucky he's as healthy as he is for as early as he arrived.

Thanks Gisele for the remark. You may have helped spread awareness for Scleroderma and Sarcoidosis by helping with my search engine placement.

Some reading if you like
HELLP Syndrome
Preeclampsia Foundation
March of Dimes
Mary Birch Hospital for Women and Newborns

Spreading Awareness.

I would like to thank all my readers and everyone who "liked" my page on FB. It's a great way to spread awareness. One person who helped raise some awareness was Paul LaDue. He has created a Face Book page to get Stephanie Miller to replace Larry King when he steps down. I think it's a great idea. Check it out... The Stephanie Miller Show with her Mookes have entertained and informed me during many hours of driving to doctor's appointments and tests. I drive 46 miles one way to my medical team at the VA Hospital and 120 miles one way to my specialists in LA.
It would be wrong not to mention the infamous Mrs. Taylor, who keeps Stephanie in printer ink and has shown tremendous restraint by not throwing Steph down a flight of stairs especially in her "infirmed" state.

I also noticed Paul is supporting a movement to draft Jon Stewart to moderate the 2012 presidential debate. I have been watching Stewart since he started at Comedy Central and I have seen him ask questions I wish a real journalist would ask of those he's interviewed. And he's a fake journalist! I have to agree with Paul on this one as well. Maybe Steph should be added to the list of potential moderators?

For those of you upset about my mentioning some liberal shows, thanks for hanging in there. My dad is a Republican/ Tea Partier. I love him to pieces and we have some great conversations. If you need something else to get your mind off your frustraion with my liberalness, here is is... boobies. Boobies, they make everyone smile, don't they? My next entry is about boobies. If you found that offensive, well I've run out of things to clear your mind and I'll just thank you for hanging in there and continuing to read. Scleroderma and Sarcoidosis have no opinion.

My upcoming topic is about breastfeeding while having an autoimmune disease. A certain super model seems to think it should be mandatory to breast feed a child. But what happens when you can't?