Daycare. Finally

I finally signed up my six year-old son for 5 day care after school and summer camp. I kept putting it off because I would internalize criticisms from my ex. I don't blame him. I'm good at taking things, mulling them over and making them more important than they are. Like many, I am my toughest critic.

I had the day to myself and I feel like I am settling into the house I moved into in March. I spent the day putting things away. Shredding old bank documents that needed it. So much so, I overheated my shredder. Bank statements from 2006, two boxes of blank checks and a stack of old bills. My aha moment came when I realized I needed to be in Loma Linda then back in Temecula before the end of the day on Tuesday. That was 96 miles round trip. I automatically plaued the schedule of my day through my mind and realized I could never finish anything by 11:00. Then I realized my son started after school day camp and I had the whole day to finish my errands. I could actually feel myself standing up straighter. I had stopped running in circles.

Hitting the Wall

Yesterday my Wii age was 23, today it's 31 which to me is more realistic. At 23 I had full use of my hands, was in great shape and was training with my brother to play softball in college. Today, I feel a little hint of narcissism just reporting my Wii age. But if I don't do something, I might stop.

I feel like I've hit a wall. Really, how long can the meds I take fend off the progression of two diseases? If I wreck my liver, I will never get to drink box wine again! THAT would be the real tragedy. I feel strong enough inside, but there's pain on the the outside that makes me feel like I have hit a wall. It makes me think of that character in the movie Run Fatboy Run. (spoiler alert) He comes to the last 300 feet of his marathon and a brick wall appears in front of him. The people around him disappear and it's just him and this wall. He tries to walk through it, but fails. Finally, what seems to be hours, but is really only minutes, he gets the strength to get past his wall in his mind. That's where I feel I am. I have to get past my wall. So I'm doing it with Wii Fit Plus and writing about it. Soon the Vicodin will no longer dull the pain and I have to train my mind to be ready.

Watch the trailer for Run Fatboy Run

Me and my Wii

I had my Remicade infusion yesterday. I'm still feeling tired, but I have to get myself motivated. I have been using my Wii Fit for 610 days. For a while I was using it regularly with Isagenix shakes (I don't do the full program)and got down to a size 4. Now I'm up to a size 8 and feeling tired. So now I'm recommitting to my Wii. I'm doing it publicly hoping that shame will get me on my Wii Fit Board when my motivation is down. Let's face it, growing up Catholic might make shame a great tool when used for good. So I maybe this would qualify as a quasi-experiment. (No control group and only one test subject disqualify this experiment from scientific scrutiny.)

I will be getting on the Wii board after I finish this post today. Sunday the last time I was on it, my Wii Fit age was 51- 51!!!! I have some work to do.

Have a great day everyone. I will keep you posted and update you how using Wii Fit has benefitted me. In the meantime, here are some links about Wii-Hab, Wii-habilitation and Wii Fit used by seniors.

The 8th Annual Stepping Out For Scleroderma Walk

June is coming and it's time to go for a walk. The 8th Annual Stepping Out For Scleroderma Walk is Sunday, June 6th. Bring your friends, family or dogs or all of the above. There will be lunch, jumpies and more! Click here to sign up and join our team, No Brake Jakes. Last year, a member of our tam had so much energy, we were eating his dust during the walk. So this year, we named the team after him.

If you can't make it, show your support by sponsoring me. The Scleroderma Foundation has made great strides in treatment of symptoms and helping those with this disease cope by connecting with others. To learn more about Scleroderma, visit www.scleroderma.org

On another note, if anyone knows events for Sarcoidosis, please contact me about them. Thanks.

See you all at the walk! I will be posting updates about events as I get them

Check out my sponsor page at www.firstgiving.com/karenvs

Custody and Luaus

So a few weeks ago in mediation, my ex decided to try to get full custody of our 6 year old son. He told the mediator because of the severe contractures of my fingers, he felt I could not take care of our son. He could provide no conclusive evidence as to why other than, "because I say so". He managed to make the mediator angry, to my amusement (later). So a judge ruled in my favor for joint custody one week after mediation. My ex apologized on the way out of court, not to his credit- just to my amusement. So that's that.

On to a Mother-Son Luau at my son's school tonight. I'm wearing short sleeves and I am very self conscious about it. My hands look like out of place drumsticks on to end of my arms. If it was any other event, I would put a long sleeved t-shirt under my dress on, but what kind of chicken shit would I be wearing a long-sleeved shirt to a luau? That's no example to set for my son, right? So, despite my groans about it, I'm just going to go for it. For the record, I really, really don't want to. I feel like I'm jumping off some cliff all in spite of my own vanity.

Happy Tax Day Everyone!

Okay, so it's not the happiest day of the year because no one really likes to pay taxes. It's not always easy to shell out the money owed. I for one had to file an extension this year (oh the fun of divorce- but that's a whole other entry) While driving to the VA to get my 100% coverage paid for by taxes, I thought about the things I will get for my money once I do pay taxes. Roads. I really like these roads and the neat way the fire department will come if I get into an accident on one of them. The police are nice too. I like how if I call them they will come. Another amazing thing is I only have to remember 3 digits if I need them in an emergency. What else do I like... Oh yeah, that whole food safety thing and the FDA. Oh, and when my mom gets too old to work, she will get Social Security and Medicare so I don't have to worry too much about her if I can't support her. Schools are nice too. I'm not sure if I covered everything. No system is perfect, but I'll take this one.
Yeah, it's not so bad.

A Thing or Two About High Risk Pregnancy

Nebraska- Forget about prenatal care and the born, because we only want to protect the fetus. Once the fetus is out though, you're on your own.-

If you're going to stop women from having an abortion (a legitimate medical procedure that is always a last resort), you can't say you are Pro-Life if you cut prenatal care. That doesn't sound very Pro-Life to me. For individuals who want less government, they appear a little too excited about the government interfering with a personal family matter.

One problem with this is the reason they stopped the prenatal care bill was because it would cover illegal immigrants. They are here illegally, but they are human beings. If you are Pro-Life, isn't that supposed to be Pro-Human? Most Pro-Life advocates call themselves Christians, but there is nothing Christian about turning down medical care to ANYONE. What would Jesus do? I think he would be pissed. It appears to me to be another example of a group who wishes to push an agenda by cherry picking facts when in truth they are using Christianity to justify their bigotry. I don't belive this applies to all Christians. Just those who say they are Pro-Life because of their Christianity but want to cut off health care to other humans.

What does this have to do with Scleroderma, Sarcoidosis and Box Wine you ask? Anyone who has had a high risk pregnancy knows things can go very wrong. Sometimes the choice is, there is no choice. The only example I can give is my own personal experience.

I have a healthy six year old son with ADHD who is a little short for his age group. He runs on the small side because he was born 8 weeks early. Because of my Scleroderma, I was considered a high risk pregnancy. I went twice a week for fetal monitoring and once a week for ultra sounds. In my 28th week, my blood pressure skyrocketed. I was in and out of the hospital for the next two weeks. The last time I was discharged from a hospital before my son was born, I got home and realized I forgot to mention to my doctor I was seeing orange spots. I called my doctor at 11:00pm and he ordered me back to the hospital. The next morning I could not see out of my right eye. I felt fine, except for being blind in one eye. That was my only symptom. My doctor was puzzled and sent me to two different optomologists. During my visit with the second optamologist, I over heard him talking to my OB on the phone, "We may not be able to let her go. She may be pre eclamptic. This hospital is not equipped for that."
When he got off the phone he wrote out directions to Mary Birch Hospital. When I got there I was checked in immediately. My son was born two days later. They took him by c-section after pumping me full of steroids as long as they could. My organs were failing and they could wait no longer.

My son spent 28 days in the NICU. The doctors and staff were amazing. It was awful to leave the hospital without him, but the parenting training the nurses gave me and my ex-husband was priceless. I left the hospital after 9 days. My sight had returned, my blood pressure was stable.

I met with my doctor a week later. He told me and my ex-husband to never forget how close I came to dying that day. Never forget that fear. Because if i were to get pregnant again, their was a 35% chance the same thing would happen sooner in my pregnancy and faster. Most likely resulting in my death and the death of my unborn baby, if I was lucky. My doctor told us I had what is called HELLP Syndrome. Hemolysis, Elevated Liver enzymes, Low blood Platelets. In short, first your liver goes, then you go into a coma you will never wake up from as your organs shut down resulting in death. The only cure is to stop the pregnancy. Do the math.

Because of the increased risk of blood clots and high blood pressure, I cannot use any form of oral birth control. My ex decided he did not want a vasectomy because well, he didn't feel like it. To his credit we are getting a divorce and his girlfriend is a great candidate to procreate with. She's really great- I don't know what she's doing with him, but I really like her. Anyway, my next option for birth control would be an iud, but I'm allergic to copper so that's out. The plastic one has a hormone and that's out so my only option is sterilization. Right now my doctors are considering tying my tubes but because of their lack of experience with Scleroderma and the complications surgery brings, they keep researching while I wait. Condoms are great, but they can break. The morning after pill does the job, but nothing is 100%. So if I get pregnant after all I do to prevent it, I fall into that category of making a choice. That choice for me is: Do I risk orphaning the child I have to carry another child that most likely will not make it to term? If pregnant I would probably wait until symptoms come up, but 35% is very high for risks. To put some perspective on risk, the risk of side effects from most prescription drugs is .02%.

So there it is. Do the math.

Tomlearn about Scleroderma, for to scleroderma.org
or
sfcure.org

To learn about Sarcoidosis, check out clevelandclinic.com