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

Not Learning = Not Living

I like to think I am learning something everyday day and I can never know enough. Last night confirmed once again how little I do know. I attended the first of a series of writing classes. I was motivated and reminded how much I still need to learn- not just about writing- but everything. It was a reminder life is a series of events and if I don't take the time to learn from these events, I'm missing the the whole point.

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.