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".

The Genetic News

I went to the geneticist on Thursday thinking that the worst news I could get would be that I had Vascular Ehler-Danlos Syndrome. Once again I had a failure of imagination.
Before I left for the big city I picked up a copy of my mom's autopsy report that I had had faxed to my internist's office shortly after her death.
Thanks to my nurse's training I could instantly translate the jargon that protects most of us from the more horrible details that it contained and quickly realized what the doctor later told me, that she was surprised that Mom lived to be 64. At the time of her death she had 5 aneurysms, a torturous (twisted) aorta and several other findings.
Even though I was standing there as evidence that my mother had obviously given birth at least once, she continued to ask me about my mother's pregnancies. I told her that she had been pregnant twice, at an early age, 20 and 21, delivered us both at 34 weeks and then had not been able to get pregnant again. I was taken aback when she told be that was a good thing. She then went on to quiz me about the pregnancies of my aunts, cousins and nieces with emphases on their ages at deliveries, gestational ages, which seem to have been fairly early upon examination and was relieved to discover that no one had ever had a uterine or aortic rupture or died during pregnancy. Of course most of the women in my family give birth early in their lives, one or twice and then never again.
Finally at hour 2 of my appointment is where thing went from interesting to scary. She noted my widespread eyes, that I artfully disguise with makeup, my velvety skin, my translucent skin through which you can see all the blood vessels in my chest,my poorly healing skin as evidenced by various scars and surgical incisions and my old hands (her words, not mine, that one hurt).
But the one that tipped the scale was my unique and and seemly harmless bifid uvula. Yup, that little thing that hangs down from your throat should not split in two like a snake unless you have a cleft palate, or are American Indian or unless you have Loeys-Deitz Syndrome.
After I shared my bifid uvula with all the learning interns and residents they could round up (I am that kind of patient, thank God I wasn't in the stirrup!), we finished the rest of the exam and then the doctor shared with me the very scary news and implications of the bifid uvula, the rest of my physical exam and the finding of my mother's autopsy results.
The short version is that she thinks that based on these things she thinks I should have my mother's tissue tested for Vascular Ehler-Danlos and Loey-Deitz Syndrome and them when she tests positive for one we will know which to test the rest of the family for. She would also like my uncle's tissue's as well to test, both died in 2006 and were autopsied, so this should not be difficult, other than contacting my aunt and the authorities. However, the down side is the cost, which is $3000.00 to test each.. Not covered by insurance, and we are pouring our money into our post Ike recovery, so we will most like just go with genetic testing for me. The blood has already been drawn and I am thinking to just test my mom's tissue once we know which one I have that will save us some as it seem likely that we have the more serious Leoy-Dietz.
I am in a fog and have felt like I should have a sign above my head exclaiming "Dead Woman Walking". My husband and I have tried to use humor to deal with this horrible turn of events but I am just barely keeping my head above the water. The life expectancy of those with Vascular Ehler Danlos is between 44 to 48, 36 for Leoy-Deitz . I just had my 45th birthday.
I am still processing and have not yet told my daughters about this horrible turn of events. I am praying that the genetic clues are wrong and do not really lead to this disease and that we can continue to search for something that won't have a 50 percent mortality rate during pregnancy and doesn't involve a disease that is autosomal dominant as both of these are. Both of my daughters share my mystery affliction with me.
It is for them that I am most sad, sad at the thought of their shortened lives, to have to risk child bearing with a 50 percent mortality rate with a 50 percent chance of passing this disease on to their child? What kind of risk is that, simply unacceptable is what I think and I am overwhelmed with sadness that I have done this to my children.
My days are passing in a familiar pattern of waking, going through the motions and then being so grateful to tumble to bed at night to toss there with thoughts of "no more babies", not just for me but for my girls, ever. It breaks my heart.

The Cone of Uncertainty

The month is almost over, for which I am very grateful. I am back from a 2 week vacation that has left me depressed for reasons uncertain. I am struggling to understand why. We had an enchanting time, but did spend much time wet and cold, but didn't seem to mind, although neither of us could convince the natives of this. We tried explaining the 100 degree weather we had left here in Texas, but only those who had actually experienced such could comprehend that choosing which sweater (heavy black or heavy green?) to wear each morning in August was not a problem.
We spent a magical day in Crieff, Scotland where I celebrated my 45th birthday and attended the Highland Games. Crieff is also the home to the home to Ewan MacGregor and The Famous Grouse Whiskey. While Ewan wasn't in attendance this year, his father and brother were and there was plenty of Scottish Whiskey. We also went to the Isle of Skye, rode the sleeper car to Aberdeen and shopped at all my favorite stores. ( Almost every store in Scotland is my favorite, even the ones with the really trashy Nessies.)
We also spent some time in London and spent a whirlwind day on a bus tour that took us to Stonehenge, Windsor Castle and Oxford England. Stonehenge was strangely disappointing and I am not sure if it was the crowds of people or that it seemed so diminished by it location in the middle of fields, or by my increasing depression. It just was not as I had imagined it, after all these years of watching television specials and reading articles and books. I felt detached and without the imagined magic.
I have felt this way before, this detached, survival mode, but didn't expect to feel it in England on vacation, surrounded by multitudes of strangers. It is only now, with a few days to think that I realize that my inner clock had understood what I had traveled half the world to escape, that this particular month of August marked the anniversary of the birth and death of our child.
It is only recently that I told my oldest son about his second sister, as he was just a toddler when she was born. He was sad and said he suddenly understood the age gap between him and next sibling. He and his older sister are only 14 months apart and there is a considerably bigger gap between him and his next living sister. I have not yet told the other kids about their sister, as we are suddenly dealing with another health related revelation that affects their future in a very negative way and I do not want to add to the girls' burden.
The pregnancy with my daughter over 20 years ago was not a planned one nor an especially welcomed one. This of course causes me all sorts of guilt and angst even 20 plus years later.
At the time I was in my mid 20s with 2 year old and a one year old and my husband had just gotten out of the Navy after 4 years. I spent 6 weeks living in Stephenville Texas in a hotel while DH drove to his new job as a nuclear engineer at the nearby power plant. I lost 25 pounds in 6 weeks due in part to stress, I had quit college to marry, and could see no way clear with a very unhappy husband, I was stranded in a hotel without a car during the week and frantically looking for a place to live during the weekends.
We quickly made an offer on a fixer upper in a small town, moved in without our furniture, which was in storage and set about finding an ob/gyn. Then as Tash would say the wheels started to come off. The dates never matched on the ultrasounds, and I kept telling the doctors that the baby was too small for dates. Instead of listening to me, I was just told that I must be wrong and that my doctors in Connecticut were wrong, that I wasn't really pregnant when I thought I was and that I got pregnant much later.
Of course, if you have a daughter that turned two in March and a son that turned one in May you don't keep track of you periods as if your life depended on it and know exactly the morning that you woke up to find the diaphragm in the sheets? I know, too much information, but I had a very early blood test as soon a possible so I knew exactly how many weeks pregnant I was by dates. However, because I conceived and got my early prenatal care in Connecticut it was as those early weeks of care never happened.
We went to specialists for more comprehensive ultrasounds and the results were the same, my dates must be wrong. When confronted with my positive pregnancy tests there was only puzzlement, until finally my baby died in utero and then all the experts agreed that okay, there must have been something wrong.
21 years later there is a sort of mind numbing amnesia around that time. New friends took the two children so that I could go and deliver my tiny child. We didn't tell our families, embarrassed by my accidental pregnancy and not wanting to share our very private pain, and the Midwestern sense of privacy from his family and the intrusive questions from mine.
We grieved for our little girl and have always felt an absence in our planned family. Even now, with a possible diagnosis of Vascular Ehler Danlos Syndrome likely to ring the death knoll on our plans to finally add to our family through donor IVF, I can't help but wonder if this diagnosis is what killed our little girl. I go for genetic testing on September 25th, so I will let you know.

Back From The Near Dead

I am back, returned from the dead, or near dead, as it were. I had a sinus surgery on July 3rd, designed to eradicate the MRSA infection that has derailed our plans to add to our family. The surgery went well and I was amazed that I went home without any pain, especially considering that my doctor removed the walls between each sinus cell within my sinus cavity using a laser knife. I was worried as he refused to take my MRSA infection seriously,and I actually has to get the appropriate antibiotic coverage from my internist.
About a week after my surgery my daughter was hospitalized and had surgery. I was with her during her 5 day stay and while there kept feeling progressively worse. My theory was that I just needed a good night's sleep in my bed instead of a chair. After she was discharged I was still ill and started to be cold all the time, something that never happens to this no so thin woman who lives in the tropical Gulf Coast of Texas in mid July.
I had finished my three different oral antibiotics about 4 days earlier so off I went to my internist to get some more. I had been to see the surgeon 2 days previously and he had removed my packing, had spent a lot of time asking me how I felt,(a very new concern), and then had spent 5 minutes suctioning mucous out of my sinuses. I knew I had a post-op infection, but he had chosen to ignore it and also was not going to treat.
When I saw my internist he decided that I was most likely septic with MRSA, so off to the hospital I went. Sepsis is when a bacteria gets into your bloodstream and MRSA is very difficult to treat, usually with IV vancomycin given IV for 6 weeks. So now I have a central line that goes into my heart for IV therapy, a nurse who comes to my home to draw my blood before and after every 4th dose to check by blood levels.
I was in the hospital for a week for sepsis, had an emergency room visit when my central line broke and the line bunched up in my subclavian vein causing a large bulge in my throat and panic in the emergency room staff. I never want to see Trauma Room 1 again. That episode resulted in having my line replaced.
The worst part of sepsis is that having bacteria in your blood stream is that it takes months to recover. You feel mentally foggy, and physically weak. I am doing physical therapy and was before I became ill in preparation for our trip to England and Scotland, I started out strong, so I hope my recovery time will be shorter and our donor IVF plans for the spring will not be delayed.

Afraid of Blogging

I am afraid of blogging. I have written a post almost every day, but when it comes time to hit the publish button I instead save it to draft. I am not sure why. The topics range from my desire to have a child to my recent visit with my dad. The topics are diverse, the grammar usually poor, the spelling checked and rechecked, but one thing remains constant, each post is very revealing.
In real life I seem to be an extroverted person who leaves no thought unexpressed, but in truth I am intensely private, someone who is comfortable alone. My home is not open to those who stop by uninvited, something unheard of in the friendly South. We don't entertain, instead we spend our time at home alone. But my posts are full of my thoughts, like this one. They say way too much about me. And I feel vulnerable and exposed, even in cyberspace, with a readership of two, or three.
I started blogging so that I could document our journey as we try to have a child but instead it feels as if every word I write exposes some deep and needy part of me that is better left hidden. It is strange, Helen of Everyday Stranger, a blog that I love and read religiously sent me a lovely email about writing about her twins and how she didn't want that to be painful for me. Interestingly enough, that has never been painful for me. I always thought that it was because I have had children, so I didn't feel entitled to the angst of those women who have never had a child. It is recently that have allowed myself to dream again, to see a baby and turn to my husband and say, "I want one of those".
Please forgive the misspelled words, any grammar errors, etc., because if I don't publish now, this will join all the other drafts.

Off To See The Wizard

I leave for Washington DC in just a few hours to visit with my dad. When I was a kid he worked for a mysterious government agency that has now been featured in many television shows and novels about the Cold War. But when I was a kid he was a one of those Cold War warriors who traveled for weeks at a time returning from abroad with exotic candies, dolls for me and swords for my brother. On a day to day basis we either lived overseas or in the Virginia countryside while my dad commuted to DC or Langley.
If I asked my dad what he did that day he would give me a vague answer, or if he was feeling humorous he would tell me one of his Cold War jokes, that he had "pushed back the Communist tide or made the world safe for democracy".
My dad is now retired, but still working for friends of friends, still keeping the world safe, although the Communists he will tell you are the good kind of enemies, easy to keep track of, followers of the rules, honorable in their own way.
It is a new era in the business of watching our enemies. It doesn't help that my dad forgets things. At 65 he has begun to have trouble with day to day stuff, like getting from point a to point b and remembering to get his ATM card from the cash machine after the withdrawal. Taken alone, it doesn't seem like much, and it actually isn't, but I have watched these changes for the last 5 years.
I have tried talking to my dad, he blows me off, and cites his ability to remember cyphers from 40 years ago. It breaks my heart that he cannot remember a conversation from yesterday. So far, he seems to still be functioning. He has bought the house next door to use for when he retires again, I anticipate that if we are successful with our IVF I will be raising a baby and taking care of my dad at the same time which is fine. I am trained as a nurse and have been anticipating this for a while. My dad is very young and in very good physical health, he use to say that we were all going to grow old together, meaning me, my mom and him. Unfortunately my mom died in 2006 so he is the only parent I have left.
I do worry about what will happen when I am no longer able to take care of him at home. I guess we will have to talk about that. For now we have not told our family about our plans for IVF. We have discussed it with the kids, but no one else. My dad will only think in terms of how it will affect him, unfortunately being a defender of democracy has never meant he wasn't egocentric.
Of course, all of this is moot, for now, as we are not there yet, so no counting chickens etc.
This week will be spent working in my dad's yard, attending my nephew's high school graduation, my niece's college graduation and a family reunion. I will have to come home to recover.