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About me

Dulce
From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body". I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!
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      • Brussels Grandma!
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      • At war with myself/the new me!
      • Are you tired of me yet?
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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

Brussels Grandma!

Wednesday, March 23, 2011


Hey Y'all! How is everyone? I am doing pretty darned good! Shhhh.... don't say that too loud, right? I thank God every day that I haven't had an bleeding from my mouth, nose or wound area! Yay! I am taking extra meds like Iron, Potassium and even something my brother-in-laws Greg's youngest brother is involved with - a multi-vitamin pack called Life-Pack Nano! I've been off steroids for almost a week - I was on them for a long, long time, so I'm happy to be ok!


I just wanted to add something when I was talking about my great support system! Lately, Mark has been working late and worked all weekend, and I had been telling Mom that Hanz and Bella weren't getting their walk that Mark usually takes them on. I would love to take them myself, but since I had been so weak before and I really couldn't handle them on my own .... but Mom volunteered to help me walk Hanz and Bella! Wasn't that sweet of her? I didn't take her up on it, but I sure appreciated her thoughtfulness! Hanz gets really excited when we tell him we're going to Grandmas! Bella is too little to understand all the Grandma hub-bub, but she's always happy to see Mom! Mom even has a "Brussels Grandma" T-shirt! She takes that role seriously, and always asks about our furry kids and says to give them a big squeeze for her!

I had a little big of a rough night - was a little anxious and couldn't seem to get comfortable. Wasn't time for any meds, although I felt like taking something, but it was too close to the time to get up, so I didn't want to take something that would make it that much more difficult to get up when the alarm rang! Hanzie was right there with me - if I got up, he got up. If I went to the bathroom, he followed me over there. Such a sweetie! Bella slept through the whole thing, which is good. She and Mark don't need me taking their rest away! Speaking of, I'm heading to my evening nap! Mark is working a little late, but he'll probably get in with time to walk the kiddos. I need to check on Bella, her latest habit is running off with my rubber stamps! Mark moved a group of them from a lower shelf, but she found more that she could reach! She had the rubber stamp of a Brussels Griffon a bit ago! Yikes! Hanz didn't do that for long when he was little, so here's hoping we can break Bella of that habit!


My love to all of you!


Cyndi

Posted by Dulce at 6:23 PM 0 comments  

Positive Energy!

Wednesday, March 16, 2011




































Hi! I don't even know how to open my blog entries anymore, so I'll just say, "Hi"! You know, Mark and I were watching the Celebrity Apprentice show Sunday and I was just shocked @ how Dionne Warwick and Star Jones were behaving! The job was to create a childrens book - each team was responsible for several objectives regarding the book, but the way Dionne and Star insisted on getting credit for coming up with the idea and having written the book was just embarassingly ugly. Yikes! I suppose I could see their point in making sure that they are given credit for coming up with such a great idea, but it was the way they went about it and I felt that since it was for charity, that it should have really been handled better. Very negative - if you saw the show, Marlee Maitlin was so mad about how terrible the attitude was that Dionne and Star had! I'm just using this as an example of what I had just written previously - how I really try to surround myself with positive people all the time - who would want to do otherwise? It just amazes me how much "bullying" there is out there in our daily lives. Just going about our business, have you noticed how much "evil" there is out there? OMG!! Why would anyone behave so badly? Apparently the people that act that way are very unhappy and want to make other people miserable! Wow. I mean, really? REALLY? There are people out there that are so bitter and angry that they thrive on "attacking" happy people like me?! You would be amazed. That's ok, I know who I am and what I believe in and I won't let anyone get me down - @ least not for long!
















I just want to emphasize how blessed I am to have these people I can call my family and friends! Here is a photo of my sister Celia and I - this was taken on Christmas Day in Mom's back yard!














Then, there is the beautiful Fossum family! My brother-in-law Greg is awesome - always trying to do something to help me in some way to make things better! The boys are so special - Davis tells his Mom that he prays for me and always asks how I'm doing. Mark (little Mark) has come to special prayer Masses for me - that has meant the world to me! He is such a doll! Both boys are very sweet and loving to their Aunt!












Here are some of my very best friends! Here is Patty (wearing glasses) and Dorinda - this was taken in December and the first time they met each other! Patty lives in Dallas and Dorinda in Houston! I've known Patty since I was 13 and Dorinda since I was in my mid-20's! Both are amazing and wonderfully supportive of me and my situation! Dorinda has been with me through countless surgeries through the years as I've tried to get rid of this avm! Dorinda is a party waiting to happen and very loving! Patty and I have always kept in touch through the years and whenever we see each other, it's as if no time has passed, we pick up right where we left off! Patty and I have always had fun laughing @ the same things and just feeling comfortable with each other, knowing we are there for one another no matter what!





Then there is the beautiful Felice, pictured here with her darling little girl Emily! She lives in Dallas with her husband Jon and of course
Emily! I met Felice when she joined the Cathedral Choir and we hit it off instantly and have known each other probably about 17 years! She and I have laughed so much and had lots of fun through the years! How can you go wrong having a friend named Felice - her name says it all!








You know I have to say that my kids are the cutest in the world! I come home to these adorable puppies that love me unconditionally! Hanz and Bella make me so happy - they are wonderful therapy for me when I've gone through some bad times with this avm! To me, heaven is jumping in bed wearing my jammies with my babies surrounding me and Mark laying next to me! Mark takes such great care of me - from doing all the cooking, to everything else in between! We always say that when we said "in sickness and in health", we had no idea it would be this difficult! It has brought us closer and has taught us so much about what is really important in life!
My Mom is always praying for me. My in-laws, Doris and George and thier friends are always praying and asking about me. My brother-in-law Jim and his wife Shelley have been so fantastic about helping us with whatever they can do to make our lives a little easier! I appreciate Jim taking Mark out to lunch or to an event, so that Mark can have some fun and get away from the having to take care of me!


Well, I have got to get some sleep! I must take a nap between my work day and dinner time! Thank you everyone - for being there for me!


Love,


Cyndi







Posted by Dulce at 6:13 PM 0 comments  

At war with myself/the new me!

Saturday, March 5, 2011




How is everyone? So much to think about, say and do, right? Managed to clear off a pile of clothes I'd been needing to do something with in the bedroom. Ridiculous that I don't get rid of old t-shirts when needed or things that don't fit - ugh! Mark told me not to over do and he prepared us pecan pancakes for breakfast and then went into cleaning mode! I ventured out for a quick errand and wanted to go to Wal-Mart, but my knee said no way! Mark just got back from walking Hanz and Bella and is fixing dinner - yay! I've got to go do my part and fold laundry. Can you believe it's Ash Wednesday next week? Our dear choir friend Terry Schneider is having a Mass for our Intention on Wed. @ St. Pauls in Fl. Bluff. @ 7pm.

Well, I have finally reached the point of having to make some changes in my life regarding how I take care of myself! I need to listen to my body and not my mind! I've been rebeling and in denial by not working with the Therabite. Well it got to where I can barely get my mouth open to put food in it (I know, I know ....) because I wasn't working with the Therabite - so I don't have a choice! Unfortunately, since I have a little paralysis on the left side, it's a little tricky to get it going, but it has already helped in just 2 days! Plus, I was always staying up as late as possible because I was enjoying what I was reading so much, but no more! When I drop the Nook or magazine, and my eyes start drooping - stop! I was trying to lead as normal a life as possible, but there is just no way with the horrid avm. I've had to take a step back and say it's ok to put the book down @ 10:30 p.m., instead of 1:00 a.m. I've been @ war with myself, refusing to give in to the fact that I can no longer function in a normal way! I don't know what I was thinking putting myself through staying up so late and not getting the rest I need in order to heal! I realized as well, that after that bleeding incident @ the restaurant, I was very "weak". I was b-a-r-e-l-y getting by as far as my work day. I recently told Celia about how I was feeling and she was the one that came up with the word "weak" - I had not even thought about it, but that is exactly the word I needed. Remember that poster of the kitten holding on to the knot @ the end of the rope? That was/is me!

First, a great day for me is no bleeding. Ahhhh, that is a fantastic day for me! Actually, I am having a slight problem related to that. I don't know whether it is fear that I may bleed, or psychosomatic (sp?) that I read in the hospital discharge papers that the patient may have a hard time breathing due to a possible blood clot in the lung? Every once in a while, I feel out of breath and I stop and take a deep breath and relax a few minutes. It's like I forget to breathe - I have to stop and tell myself to take in a deep breath.

Ok, so I get home after dealing with my work day, greet my babies that are super excited that Mommy is home .... get in my jammies and relax! Mark is usually home right before I am, so he gets out of his uniform, puts on some shorts and gets the kiddos ready for a good walk! While I'm napping, the kids are on their walk with Mark and he later comes in and starts getting our dinner ready. After dinner & watching TV, we try and get our things ready for the following day. I start getting sleepy and now I'm ready for bed right then! I used to ignore how I felt, thinking I could stay up (and would) until 1 or 2:00 a.m.! What was I thinking? Yikes!! I now go to sleep @ 10:00 or so and sometimes wake up @ 2:00 a.m. I'll read a few minutes and go back to sleep and maybe wake up @ 5:00 a.m. I'll read again a few minutes and drop back off to sleep until the alarm goes off @ 6:45 a.m. I am listening to what my body wants to do, due to medication or whatever.

I was due for a haircut a couple weeks ago, and told my hairdresser I needed something quick and easy! Nothing is going to make my avm look better and the least amount of time I spend in the shower the better! So now I have a cute, short cut that makes my life easier!

You know, a couple of my co-workers tell me they can't get over how cheerful I am, considering what I'm going through. I'm always in a good mood and trying to enjoy the day. One co-worker said I was remarkable. Well, I'd like to think that avm or not, I am a pretty happy person! None of that happened overnight of course, and it's not so much that I'm remarkable, but I surround myself with fantastic people! My support group is phenomenal! I've got prayers that give me the strength to endure my situation. From my amazing husband that tolerates me, cares for me, makes sure I have all my equipment/medical supplies. Our entire family contributes not only monetarily, but emotionally, and spiritiually! Having their support - and this means friends too! - enables me to carry on with my day! My friends always make sure I know they care - just by being in their thoughts and prayer and I get surprises sometimes like a cheery card/e-mail, or Starbucks gift card! All these things put a smile on my face and make this "hell" I'm going through a little easier! I must say that I never envisioned my sister Celia stepping up the way she has. She truly knows the meaning of being a good Christian and showing her love in so many ways. Celia is always busy taking care of something/someone, either helping her husband Greg with their business, doing something for the boys, or choir and friends. She still makes herself accessible to me/us whenever we have needed her. It is a huge help when she goes w/me on the trips to CO - but she gives something she has little of and that is time! Celia has found time to make sure I'm ok. Not only assuring me with words, but taking me to appts., picking me up after having a bleed, staying an extra Mass so that she can join us - just overall being there, giving up her time to help me! So, with everyones help, I can have some happy moments, knowing that I'm not alone while we wait for this avm to be overwith! I'll be seeing Dr Yakes again during the first week of May - yeah, I'll be spending my 50th birthday with my second family @ Swedish Medical Center!

Thanks again everyone for all your love and support! All of you together help me function in as close to "normal" way as possible! I still have so much to do - a lot of correspondense to catch up with! Take Care!
Love,

Cyndi

I'm putting in some photos that you may have seen before, but I just haven't had time to take any new ones! Oh! Took Hanz and Bella to Petsmart yesterday and Hanz weighed in @ 12.8 lbs. and Bella weighed in @ ..... drumroll please ..... 12.6lbs! Yikes! Hanz is 2 and Bella is 5 months old!

Posted by Dulce at 7:22 PM 0 comments  

Are you tired of me yet?

Good Morning everyone! Thanks for checking in - I really enjoy writing and keeping all of you up on the latest! Some time this weekend, I want to post a photo of me w/my babies! We'll see if I can accomplish that!
I was so happy to have made it through the entire work day Thursday w/no bleeds - yay! Got home, and started having pain in my left knee. I've been diagnosed w/a torn miniscus but have put off taking care of that for obvious reasons. I've neglected too many other things my body needs to have done due to this darned avm! I remember on my wedding day, trying to shift my weight off my left knee during Mass, since the pain was a little distracting. I would periodically have these pains, but being on such great pain meds, I was able to dismiss getting anything done. Well, actually about a year ago, I got as far as getting a cortizone shot and an MRI and an ortho appt., but just didn't schedule the surgery! Unfortunately dropped the ball on all that, probably due to some avm emergency. Back to Thursday night - went to bed and by 4:30 a.m., was in so much pain on my left knee, that Mark wanted to take me to the ER. Told him no way, I would wait a few hours for my PCP to open than to sit in the ER - this way @ least I could be somewhat comfortable in my bed!
Took another pain med. that let me sleep the next few hours! Called in to work, got in to see my PCP, got a cortizone shot and an appt. for an MRI @ 2pm. Arrived for the MRI, had asked whether I'd be stuck in the tube due to my claustrophobia. Really, from the neck up, I was outside the tube. I did run into some problems though - of course! Since we arrived early for the MRI appt. to fill out paper work, read magazines in the lobby until my turn, etc. Well, problem #1 was having to lay flat on my back - where I "normally" sleep almost sitting up. Plus, I should have checked the time on my pain meds - I was almost 2 hours late in taking that - causing me alot of anxiety! Since I was not propped up in a sitting position, my sinus's were draining to the back of my throat and I was going into withdrawls from wanting the narcotic in my system for pain. I called out for help but of course no one heard me! I had already been praying alot and just could not take it anymore! Finally was heard and the tech didn't want to let me out of the tube, saying he only had a few more minutes to go! Yikes! My mouth was so dry, I was pulling my hair out and going crazy! Was so happy to finally get out of there and get my situation under control! Whew! Went home to rest in bed - propped up - after having a snack. My knee was finally tolerable between my pain meds, the steroids I'm still on and the cortizone shot!
Woke up and didn't find Mark - thought he went to the grocery store, so called him on his cell. He was outside talking to our neighbor, and another neighbor had stopped by to talk and asked how I was. After Mark told her what we had been going through, she came back and handed Mark a plate full of home made tacos for our dinner! OMG! This was the perfect, neighborly, Christian thing she could have ever done! What a blessing! Gave Mark a break in having to cook and they were delicious!!! I told Mark that when ever I was well again, I wanted to really make concious decisions like that in always going the extra mile to help someone in need! Had our tacos as we relaxed and watched tv. Got read for bed and I realized Bella threw up! Had to remove the bedspread, thought she was ok, but nope! Threw up again - there goes the top sheet! Poor baby girl! Mark gave her a little "mylanta" that we had gotten from the Vet last time Hanz needed it. Bella still threw up a little more - but seems ok now. I stayed up until 2:00 a.m. trying to relax and to kinda watch Bella - but all seems well this Saturday morning. I'm going back to bed - just wanted to let you in on the latest! Take Care!

Cyndi

Got a disc of photos from the MRI - waiting for the Ortho appt. and will set up surgery for torn miniscus. Not letting this go this time - having to follow it through and will have to take care of it between CO trips and all!

Posted by Dulce at 7:40 AM 0 comments  

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