Sunday, March 29, 2009


I kind of count down the days of my life...just biding time until I can have surgery. And now I can say that I made it through another weekend. It was mostly sick and rough and crabby, but ended on a more positive note, when I was able to cook dinner for Gus and myself. That hasn't happened in months! But he's swamped with work for grad school, of course. And next weekend, he'll be out of town for a conference, so it will be a while until I can see him again. This would be so much easier if we could just live together full-time already. But circumstances like his work and my health don't allow.

So, I'm wondering if my workout Friday contributed to my particularly sick day Saturday. The other option is that whatever was causing my fever was the culprit for my misery. But, it doesn't matter much anymore, because my fever seemed better today, and the abdominal pain was much less than it has been. So perhaps Dr. Marshal was right in his guess that I had torn some scar tissue and adherences by twisting the wrong way. It seems unlikely that this would have caused so much pain, but I'll take it, if that means the pain will go away on its own. I would just need to maintain some amount of core twisting to not allow the scar to adhere to the surrounding tissue so that doesn't happen again. We'll wait and see on this one.

I can't believe it snowed this weekend, and it's already Monday. That makes my mood much darker and discouraged. I sometimes feel so hopeful about my bone density improving and the surgery helping. And other times, I feel like this vitamin D can't possibly be enough to harden my bones, and who knows if the surgery will work? The doctors are always so confident that the surgery will make me better. But better in what way? Normal? Yeah right; I am so far past normal, I could never get back. Less pain? Less fatigue? Less nausea? No pain? No fatigue? No nausea? Who knows? No one can really tell me what to expect or what state I can hope to be in. Because some people have this surgery, and it fails...they just don't get any better. Due to the effectiveness of manual cervical traction, I believe that I will feel better. I just don't know how much better.

I wonder what I'll be able to do, once I spend a year (yes, a full year...maybe more) recovering from surgery. Will I become a perfect housewife? Will I become a volunteer at a hospital or animal shelter? Will I finally learn how to speak Spanish (Yo pienso que no, nunca, es imposible)? Or will I be satisfied with my current existence? Will I want to find more work?

I know I'll want to walk around more (ditch the wheelchair)...take my dogs for walks for no a better supporter for those I love...develop more something able to do things that other people do...become the person I was meant to be, but haven't had the chance!!!

I've been getting gradually sicker since childhood...moreso during adolescence, but certainly during my most important formative years. If my health were to drastically change, I could change, too. Maybe I would like myself more.

I file all of these things under the category of "someday".

And while I'm on the subject, I might as well mention the subject that never really leaves my mind...the possibility of becoming a mother in my lifetime. I believe that it is part of the reason I am on this earth. With such good role models and examples all around me, I know I would have so much to pass on to another person. My life wouldn't be complete without it. There are, of course, many practical dilemmas with this idea. First of all, when I talk about this, I'm truly speaking of a time many years from now. However, with my personality, I need to be allowed to think about and discuss the possibilities now, so I don't feel that I am doomed for life.

One major restriction on my future motherhood is my health and its effect on my ability to raise a child. I hope that in time, and with the right treatment (this next surgery), my health will not be such a great restriction. In addition, if I reach a state of improved health, could I really risk losing it by putting my body through the trauma of pregnancy and childbirth? I might never come back from that.

The other problem may be the moral dilemma of my lifetime. Chiari, POTS, and my form of EDS are still genetic mysteries. However, when you talk to families in the chiari world, you see how common it is for a mother to pass on one or all of her conditions to all of her children. With chiari alone, it seems less likely. But with the "trifecta", we're seeing whole families that are extremely sick and requiring a lifetime of medical treatment. Would I be able to live with myself if I knowingly gave this sickness and pain to someone I loved? Is it right to create a person just to put them through a life of torture...just so I can feel that my life is more complete? How could I take my child, as many are having to do, to have the same surgeries that I have suffered through? It doesn't seem right. We don't know the statistics, but with each study that is done, the chances of inheritance seem to get higher, as more and more chiari families are found and studied.

So, without too much more rambling, other options may need to be considered, such as surrogacy and adoption. This is a challenge for another day, but as people say, "my biological clock is ticking..." I do see pregnant women and women with infants around me and envy them for having something I may never have.

Those are all of my hypotheticals for the day. I'm a girl with a lot on my mind.