Tuesday, October 30, 2012

Complicated Symptoms

I'm not sure if it's just my perception of my health or if it's actual reality but I view my health symptoms as a product of complications that originally started with FAP, not as symptoms of FAP. In the beginning, I explained what FAP is and my experience in general of FAP. Allow me to clarify how I classify the symptoms from FAP and complications. The cancerous polyps and the resulting surgeries were because of FAP, but the complications from surgeries were not because of FAP. I don't view my bowel issues as a problem because of my FAP but instead it's a result of complications from surgeries that I initially had because of FAP. If I had not had surgery complications, I very likely wouldn't have the SBS. So although it is a distant effect of FAP, it is not directly caused by FAP.

Because of this distinction I become ever so slightly vexed when I'm asked if such and such issue is because of my FAP. I suppose you could technically consider symptoms as such, but I don't and I'm not going to blame things on FAP disease that aren't directly caused by it. Doing so is like milking the disease and falsifying information. FAP sucks and is a horrible disease, but by itself it isn't necessarily such a god awful disease. Yea you're guaranteed to develop cancer at some point, but caught early enough is easily treated and likely will only require surgery as treatment option. I view desmoid tumors, although benign, as the 2nd worst symptom or effect of FAP because of the effects on other body parts and organs, especially if the tumors are inoperable.
I don't know why I'm touchy about this, but for whatever reason it irritates me and I prefer the distinction to be acknowledged. To me, it's a simple distinction that doesn't need to be muddied or misidentified. That doesn't help matters, it doesn't help the public understanding of FAP and it doesn't help the individual with FAP. FAP isn't a well known disease, it's a rare disease and the majority of people have never heard of it. Misguided information won't raise awareness, just myths.

Awareness is important for public knowledge, higher rates of screenings to detect cancer early, and increased funding for research of the genetics, treatments and cures. There isn't a whole lot known about FAP in comparison to non-rare diseases and there isn't very much research on FAP. If we want this to change, we're going to have to work together to increase educated awareness and provide valid reasoning for research.

Sunday, October 14, 2012

Death Warp

In an earlier post I wrote about how chronic life threatening illness warps your mind and I started thinking about how else my mind has been warped over the years. It brought me back to an earlier realization that my warped mind has re-warped itself in the aspect of accepting death since I've married. Prior to marriage, I would have been fine dying any day, any time and wouldn't have thought much about it. I had decided if I were to develop cancer again that I wouldn't undergo any treatment again. This may sound as though I had given up on life or was extremely depressed. I had just accepted the inevitable that I cheated years before.

But something  happened, I found my soul mate and yet again some of my life views changed, contrary to what my life views had been for so many years. Life with my husband has provided new hope and new dreams for the future which in turn has led to altered life views. Although I am still adamant about being the first to die within my immediate family, I am not as ready to die as quickly as before. I believe if I were diagnosed with cancer again that I'd agree to undergo treatment, although I may not complete the treatment depending on the quality of life. I still don't believe I'd agree to aggressive treatment for any disease until the absolute end. At some point, I believe I'd defer to palliative care once the quality of life began to become unbearable. I acknowledge that of course, one can't truly know what one would decide to do until faced with such decisions. Especially as times have changed and new hope is given.
My views have changed even to the point that if I were to outlive my husband (absolutely fearful of this occurring) and we have children that I would try to continue life for our children, who hopefully would be adult children at that point if such a horrific tragedy should occur.
Even though I have new hope and dreams for our future, such life view alterations instills more fear as I may decide to fight off death longer than previously believed. The increased fear resides in the ever flowing fear of not being the first to die in my immediate family. I do not want to outlive my parents, and especially my husband. Life has been very hard for me and is quite terrifying to me. These 3 individuals are my rock, my salvation and the thought of losing even one of these most dear persons floods my heart and soul with horrified pain.
To further complicate such life decisions, I am now an adult with the decision making ability over my own life whereas as a child, when my health was at its worst, my parents made these decisions for me and I was not to question or object to their decisions or the treatments or procedures. I have more strength in my own decisions now and perhaps as a measure of rebellion or a statement of mere exhaustion, am defiant to recommended procedures or tests and if needed, may even be defiant to treatments.
Even with these life changes, I hope for the simple solutions so that I will never have to face such decisions and I will go peacefully in my sleep one night before the rest in my immediate family.
As always, we are left with only hopes in the end. Whatever our choices, some things in life are simply out of our control and we must take the best course we believe through life and hope for the best.

Saturday, October 6, 2012

Happy WOD!

Today is World Ostomy Day to raise awareness of ostomies, bladder and bowel disorders or dysfunction. So happy World Ostomy Day!
There are so many new groups that have come together since I was a child. When I was 9, I knew 2 others with ostomies. My parents started taking me to the local ostomy support group to try to help me cope with all I'd gone through that year. I was the only young person and was absolutely the only child that attended the support group meetings. At age 11 I went to the youth rally and for the first time met other children with ostomies and similar health issues. It was absolutely amazing and helpful, I enjoyed being a camper until I was age 17. I attended the local support group meetings periodically until the support group was disbanded last year and attended several years of the UOAA and YODAA conferences and enjoy the UOAA discussion boards as well.
For years these were the only support resources available. Over the last couple of years various additional awareness campaigns and groups have started as social media has increased allowing for widespread information, advocacy and support with fewer obstacles. With all the access to others with similar experiences, you never know you can reach out to or who will reach out to you. These are amazing developments with powerful results. World Ostomy Day is another part of this new era of ostomy awareness and every new way to raise awareness is important, to think outside of the box is essential as the world and the way the world communicates changes.
What are some of your favorite ways to raise awareness and celebrate life?