Tagged and Honored

Tash, one of my 4 readers,loves my blog! Who knew? Goof that I am, totally didn't get that the award went with the meme, so I was just happy to be linked with Tash's thoughtful heartfelt blog. So I did the meme, answered the questions and then realized that she sent me an award. As I said, not, on the ball at all.
I am making progress of a sort. I saw the pain control specialist and scheduled my radioablation frequency of my sacroiliac joints. I neglected to tell him that I had given up by three time a day dose of narcotics for said joint pain. The dose is no longer adequate and I refuse to increase, due in part to respect for my liver, and my hearing (think Rush Limbaugh) and my fear of needing rehab one day or needing really strong drugs one day and being tolerant to everything.
Because I was able to discontinue the blood thinner in anticipation of being pregnant I have been taking anti-inflammatories instead and once I got over the first three days I have actually felt much better, just as I suspected I would. I still have pain, but am hoping that it will get better once I have the ablation.
I heard from the Fertility Clinic recently with an updated donor list. Considering all that is going on health wise, I haven't gotten around to emailing them yet. I am waiting to my genetic results back, if they are negative for everything I am not sure what I will do. I spent the last year getting ready for this donor IVF pregnancy. I lost 70 pounds, got off any meds that could cause birth defects, worked on my bad back and older than normal body. Hell I even got my house in shape
On that note I shall start my questions and edify my reading public.
Here goes:
1. Where is your cell phone? pocket
2. Where is your significant other? running club
3. Your hair color? auburn
4. Your mother? dead
5. Your father? demanding but delightful(I know)
6. Your favorite thing? life
7. Your dream last night? dreamless
8. Your dream/goal? return to Scotland
9. The room you're in? bedroom
10. Your hobby? pastime? dogs
11. Your fear? disability
12. Where do you want to be in six years? alive
13. Where were you last night? home
14. What you're not? a quitter
15. One of your wish list items? landscaping
16. Where you grew up? Virginia
17. The last thing you did? Dinner
18. What are you wearing? p.j.s
19. Your T.V.? old
20. Your pet? schipperkes
21. Your computer? Compac
22. Your mood? optimistic
23. Missing someone? always
24. Your car? Stratus
25. Something you're not wearing? makeup
26. Favorite store? Smith and Hawkins
27. Your Summer? eventful
28. Love someone? deffiontly
29. Your favorite color? olive
30. When is the last time you laughed? minutes
31. Last time you cried? daily
I would like to pass this award along to a couple of ladies that I have read forever; both have gone through infertility and IVF and come out the other side but are now facing new challenges with their familiar grace and courage. First is Helen at Everyday Stranger who has recently been diagnosed with Ehlers-Danlos Syndrome, the same connective tissue disorder that I was diagnosed with over 20 years ago and then there is Tertia, who writes So Close, who is pregnant for the seventh time with a much wanted baby. Lucky Number Seven, however, is causing much debilitating nausea and thoughts of previous losses. Both of these writers, like Tash, have shown me grace through adversity and could use our support and good wishes now.

"Maybe They Are Wrong"

It is amazing the level of denial that people will try to thrust upon you when you tell them really horrible news. I know that all the dead baby mom and dads already know this and it shouldn't shock me, but I guess that I expected better.
Right after I left the office of the head of genetics at Big City Medical School to call my best friend who has been a nurse for 35 years she was indignant that I had been given this short life scenario and these two disease choices. Her exact words were "Well, How does Dr. Fancy Genes knows she isn't going to be hit by a car tomorrow?" As I was driving through rush hour traffic I was trying to digest this I and I said, "I'm sure she doesn't, but her thoughts are that I won't live a normal life span and my mom was lucky to live to be 64, and that explains why my mom's sister is so ill at 60, her brothers died at 23 and 45 and her other sister died at 38." I usually speak and write in run on sentences, so forgive the example.
My dad was the same. I tried to explain, using language that he could understand, that I had had a difficult day, that I wasn't up to balancing the checkbook with him or going online to help him set up the checkbook computer account. I finally had to tell him that the doctor had told me that there was a high degree that the illness that had killed Mom had been passed to me and that it would shorten my life as well as the girl's lives considerably. He looked at me and said "so you are talking about this disconnective tissue disorder?". ( I thought close enough) and answered yes. I then told him the statistics of 44 to 48 years for Vascular EDS and 36 years for Leoy-Dietz and expressed sadness my for my daughters who are also affected. He waited until I stopped crying them looked at me and stated that since this was his last night in Texas he would really love some Mexican food and would I call the family to see who was available to go out to eat.
When I called to make an appointment to speak to with my internist, he had already heard the news from the geneticist who had thoughtfully called with a plan of care that includes MRIs, xrays, and other diagnostic tools. While there is no real effective treatment and the disease is ultimately fatal, if you can have your aorta replaced before it ruptures in time you seem to survive for a while after surgery, however, this is a recurring process as my mom had 5 aneurysms discovered at autopsy and my uncle survived his first dissecting aortic aneurysm only to develop another one a year later.
I was the last appointment of the day, and no surprise to anyone I also had my own plan. Do all the plan but also get to my surviving aunt to get more info about our family history, track down my aunt's medical records, my uncles' autopsy reports and their medical records and to track down two cousins given up for adoption in the 1970s.
This may seem like a huge list but it will keep me sane while I wait to see which way the pendulum swings. As I was leaving I asked my doc what he thought and never a demonstrative man in the 12 years that I have been his patient or his coworker, he hugged me and said "maybe they are wrong".