Hi Everyone! How are you? As always, I have my good days and bad days - forever trying to keep bleeds under control by keeping my blood pressure under 130/80. Apparently, anything higher than that, has me bleeding from the capillaries in my gums that I'm hoping Dr. Robinson will start working on in a couple of weeks! Until then it is physically and emotionally exhausting! My PCP had me double the dose of Clonodine I take every six hours and while that's working better ... it also knocks me out! Hard to stay awake @ work since I'm constantly staring @ a computer monitor and exercising my eyes with constant reading!
We're still battling Humana (Marks work insurance), while my work insurance has approved my procedures. So none of that has changed yet.
Did everyone have a fun Halloween? I had been wanting to have some costumes made for our furry kids - my sister graciously made time in her very busy schedule to do that for me! Mark and I chose the fabric and trim and they both already had their crowns - so here's a few photos of when Celia was working on their costumes and the kids once they were all done! I added some sheer, gold lace trim to the ends of Bella's cape! Mark had found a cabbage patch baby doll on the roof of one of the city buildings and I told him I should have wrapped the baby in a blanket and dressed Hanz and Bella again and they could have gone as William and Kate, Duke and Dutchess of Cambridge and Prince George!
Here is a photo of a great dane named Shadow in the Corpus Christi Dog Group! Love it! I've always wanted to find a Frankenstein head costume for Hanz and have Bella be the Bride of Frankenstein - that would be awesome!
Mark put this alien mask on and scared Hanz and Bella! They did not like it @ all and barked @ Mark until he took it off! He went next door to the neighbors where they sat in the driveway and handed out candy to the Trick or Treaters!
One of moms good friends put this on her facebook page and I really liked it! I added a comment that said, "... and don't you forget it!"
Oh, I had mentioned in my last entry how my brother-in-law Jim had been taking a wood carving class with Mark - and here is his completed project! It is an intricately designed cane that he gave his dad George! It is impressive with so much detail! Wish this were a better photo - it doesn't do it justice!
I had hoped to dress up for Halloween in a hard hat and tool belt and say I was "Under Construction"! Unfortunately, we're not allowed to wear costumes to work and I was home that day anyway, having had a bleed and had my mouth packed in gauze most of the morning.
Here is a great photo of the lovely, fellow former avm-er Shalon Whitgob as Wonder Woman! She got a co-worker to go along with her to be her Superman friend! Shalon was a life-saver for me - she helped me see I was not alone in what I was going through, and set my blog up and paved the way as she had her debulking surgery once she was done with her embolizations! She's the sweetest, inspiring person - full of love and fun and she too has an amazing husband - Joshua that has been right beside her through her avm journey!
I follow the gang from The Big Bang Theory on Twitter, and Kaley Cuoco posted this photo of kids dressed up like some of their characters on the show! Leonard, Penny and Sheldon! Adorable!
I wanted to post this photo that a fellow Brussels owner posted on her Facebook page! She lives in northern Massachusetts! We sure don't see these colors in South Texas!
My Aunt Elsa is my moms youngest sister, and she was here for a few days visiting from Washington State! She came to Texas for her High School Reunion and was voted Most Closest to Looking Like She Did in High School and also for coming from furthest away, but I think she declined that one as she had already won one prize! Aunt Elsa was a big help in getting mom organized and packing some of her things since mom will be moving to a retirement community soon! Aunt Elsa has always made me feel special and we spent many weekends with our grandparents as we were growing up and we adored spending time with them and Aunt Elsa!
A week or so ago, we had dinner @ the Fossums with special guest Fr. Roche, and we were happy Aunt Elsa was still here! Fr. Roche is a patient of Greg's and had come in for his appt. earlier that day, and had brought with him a holy relic to bless Greg and his practice. Greg always asks priests and nuns that come in the office to pray for me, and wanted Fr. Roche to give me a special blessing. Greg was not sure about the relic's background and called to ask Celia about it sending her a photo on her cell phone. The relic is of St. Faustina of the Divine Mercy. Celia was astonished, as she had just been praying that morning for a miracle for me! My family prays for me through the intercession of Blessed John Paul II - he is responsible for bringing St. Faustina and her mission, to show the world the Image of the Divine Mercy. He, as pope, brought it to the forefront of the world and was the one who cannonized Sr. Faustina as the first saint of the 21st century! Those two are very closely linked. Blessed JP2 established the Divine Mercy Sunday and went to heaven on the vigil of the Divine Mercy Sunday. Later, Pope Benedict XVI elevated John Paul II to Blessed, on Divine Mercy Sunday, May 1, 2011 - my 50th birthday - and he will be canonized to Sainthood on Divine Mercy Sunday by Pope Francis! The motto of the image of the Divine Mercy? "Jesus, I trust in You". Each of us must make that commitment to trust in Jesus completely, no matter how impossible it might seem. I especially need this right now with what I'm going through and will be facing as I start my reconstructive surgery in a couple of weeks!! Were it not for my incredibly supportive family, there is no way we could be doing this on our own! Here are some photos of that evening! Here we are with Fr. Ed Roche as I hold the relic and mom holds the certificate of authenticity and prayer!
The Holy Relic of of St. Faustina of the Divine Mercy
Here is my brother-in-law Greg, wearing a cowboy had mom gave him that belonged to Vicente - with my husband Mark.
Here we are, mom, me, my sister Celia, my Aunt Elsa and the Fossums dog, Penny!
I have to say after seeing these photos, I am so unhappy with my appearance. The paralysis on the left side of my face is the result of all the embolizations I had done in order to get rid of the avm. While Dr. Robinson plans to help make me look as symmetrical as possible, I have no idea what the end result will be - especially because this will be done in stages over the next couple of years and there may be only so much debulking that can be done if a lot of that tissue that needs to be removed is too involved with nerves - don't want to cause any more nerve damage! I am so ready to have something done - because it's even scarier to not have anything done! When I've seen nurses and doctors while I've had to be hospitalized locally after a major bleed, that don't even want to go near messing with my avm - I can only be grateful that there are doctors that face the medical challenges with the best of their abilities to help patients that desperately need their help! I remember thinking this when I first met Dr. Reed that is the head of Voice and Swallow in Denver and he would see me every other visit to check my airways before having an embolization. He was always honest with me and didn't sugar coat anything - but at least we knew where we stood. Dr. Reed was very impressive in his knowledge and it didn't hurt that he also was easy on the eyes! Were it not for these doctors, people like me would be in very big trouble!
I just realized the t-shirt I'm wearing says, Frequent Victim of Brussels Griffon Drama! So true!
In a couple of weeks, Celia and I head out to CO to finally start getting my reconstructive surgery started! She will be with me during the first five days in CO, then my husband Mark will take over the next five days I am scheduled to be there. I'll be having a consultation visit with Dr. Robinson, then the surgery in the next day or so and also a follow up visit after the surgery. Not sure exactly what Dr. Robinson will be doing, but I know he is probably the best doctor possible to help me @ this stage!
I must also tell you that one of the reasons I'm not afraid of having these procedures, is because everyone @ Swedish Medical Center is so fantastic! Of course Dr. Yakes, his P.A.'s and office staff. The Admitting staff, gift shop owners and especially the nursing staff, techs, housekeeping ...! They've always been right there making sure I'm getting the best care possible! So friendly, that I look forward to seeing them all during my treatments!
I always like including some inspirational sayings I've collected when I see them on Facebook!
I have to remind myself on a daily basis sometimes!
I can totally relate!
Alrrrighty then! I've gone on long enough ... I love to write and express myself and hopefully help other avm-ers as we struggle to heal and lead as normal a life as we can while we deal with this on a daily basis at different levels. I am very blessed to be surrounded by supportive family and friends that make it possible for me to carry on through this avm journey!
I will keep you posted! This next trip to Denver will be a major one as Dr. Robinson starts helping me fix several things that all the embolizations left me unable to function normally. However bad going through these next surgeries is, at least I will finally be on the road to recovery from this ordeal.
Much love to all! I appreciate all your prayer, love and support!
Cyndi
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