Halloween 2013

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!

Ok, I tried cropping this photo several times hoping it wouldn't come out sideways, but didn't seem to work!  Oh well.
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!

 

As always, I like to put a little comedy relief in the midst of too much avm stuff!  Here are some fun things I've found on Facebook!

 

Our favorite subjects - our furry kids!  Here's Bella looking as if to say, "Again with the camera mommy?" It's hard to catch her sitting still, she's usually on the move and my photos of her are a blur!

And our sweet boy Hanz!  He's mommy's angel!  He loves to climb on my lap when I get home from work and sniff me out to see where I've been and what I've been eating!

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

Greetings Everyone! 

How have you been?  Well, I hadn't blogged in a while, as I've not had much to blog about!  Last you heard, I was "done" with my embolizations and ready to move on to my reconstructive surgery!  That was 10 long years of traveling to Denver to see Dr. Yakes!  I probably had approx. 80 some embolizations!  Unfortunately several delays have prevented my continuing my journey to get rid of this avm - the main one being that Humana (my secondary insurance) doesn't feel it's medically necessary for me to have reconstructive surgery!  What?  What part of my teeth are cracking, my speech and hearing is impaired, my lower lip is busted, I have facial paralysis from embolizations and coils under my chin that still need to be removed during the debulking of the fluids and tissue that would give me more of a normal appearance is Humana not understanding?!  Yikes!  It's not like I'm requesting a cute, turned up nose - I'd just like the one I had before to look like it used to! I'm so tired of people staring @ me like I'm a freak!  Mark and I went to Joanne's Fabrics the other day to look for material to get some Halloween costumes made for Hanz and Bella - I was fed up with stares I was getting, so I loudly yelled, "Quit staring @ me, I'm not that interesting"!  One of my besties suggested I have a t-shirt made that says, "It's an AVM - Google it"!  Or maybe, "Settle down, it's just an AVM"!  Love that idea! Thanks Felice!  I was just telling my brother-in-law Jim about it and he thought it was a great idea, so wants to have the t-shirt made for me!

We've had a sad turn of events in our family!  We've lost my step-father Vicente Morin on September 20th.  What started off as bronchitis, went into pneumonia and he was hospitalized and discovered he also had pulmonary fibrosis.  Put on a respirator as the family gathered around knowing it was only a matter of time. Vicente would have been 82 at the end of this month and he and my mom would be married 15 years in November.  Right around the time of his illness, I was still trying to control my bleeds coming from capillaries in my mouth/gums that I'm waiting for the plastic surgeon to laser and/or resect!  Meanwhile, I constantly have to monitor my blood pressure to keep it from going over 130/80 and that involves taking my regular HBP meds, plus Clonodine to lower it every 6 hours.  My PCP gave me a new med. to take @ bedtime that would be longer lasting so I could try and get some much needed rest and not worry about getting up to take more meds if the six hours were up. Well, the new pill didn't work and I woke up a couple of nights with a bleed or blood clots in my mouth.  Gross I know, but I had to pack my mouth in gauze and missed a couple days work.  Even with my mouth packed, I had more bleeding seeping out of my mouth as I just sat on the couch watching TV.  That was the day of Vicente's rosary that I was not able to attend - afraid of having a bleed in the middle of a large crowd of people.  I still didn't have the bleeds under control to where I could attend the funeral Mass the next day.  I will go to the Veterans Cemetery where Vicente is buried once his marker is put up.  He was always so good to me and I considered him my ally!  May he rest in peace.

 

So the other day I was on Facebook and a fellow avm-er sent me a message asking how I was - said her mom was worried that I hadn't updated my blog and hoped I was ok!  Nice to know someone out there is reading it!  Thanks Ryann and Joanne!  Celia and I met them during one of our trips to Denver!I'm updating this for you!  I appreciate the support!  Ryann is currently taking a break from having embolizations with Dr. Yakes and asked why I didn't do the same.  I don't have that luxury, as right now the main focus is to get my bleeds stopped - not to mention it would be nice to get back to looking more normal and have my life back!

One of the great things about being done with the embolizations is I'm finally off of all the steroids and pain meds!  That makes me a lot nicer person to live with!  My husband Mark has been amazing to put up with me throughout the overwhelming appetite I had with the steroids, not to mention the irritability that came with the pain after procedures. 

Of course my entire family is awesome in helping in any way they can!  My sister Celia is helping me with the Humana battle and we've contacted a patient advocate that will hopefully help with the appeal!  As of now, the earliest I can be seen by Dr. Robinson is Nov. 21st, so a week before Thanksgiving, Celia and I will travel to Denver to start the next series of surgeries in closing out this chapter of my life!  Actually, we're trying to arrange for Celia to go with me on the start of this trip and half way through, Mark will take over and finish the last half of the trip with me!  It's just too much for my sister to be away from her responsibilities, home and family for 10 whole days in a row!  Plus, she's wanting to prepare her home for the Thanksgiving holiday!  We usually gather in their home and she sets a beautiful table with gourmet goodies everyone brings!  Wonder how much of that I'll get to really enjoy this year?  Oh well, there's no one that can do it for me and however bad it gets, it's got to be better than where I am now!

 

Meanwhile, for some comedy relief - saw this cute photo on Facebook and it reminded me so much of my nephew Mark!  We had a heck of a time getting our family wedding group photo after our ceremony in 1992, because each time the photographer was about ready to snap the photo, Mark our ring bearer (5 years old) made a face!  We used to tease my sister that she had an affair with Jim Carrey, because her son is big on that type of comedy quick wit!  Right before walking down the isle with the flower girl (one of my cousins daughters, also about 5 - a doll of Asian/Hispanic ethnicity!), my nephew told someone, "I hope they don't think it's ME getting married"!  Runs in our family actually - we're not well and we know it, so it's ok!  It's the people that don't know it that you have to worry about, right?

Oh!  Here's a cute sign mom found in a shop in a nearby town!  It's rare to find anything here with Brussels stuff on it, so I was happy mom got it for us!  Course our kids are cuter if I do say so myself!

Speaking of Brussels, we have a running joke (what isn't in our house?) that we call our 3 year old Brussels, Bella - "Bel-cro" because she follows Mark everywhere!  Can you tell what this next photo is?  It's Bella peeking under the door because Mark is in the bathroom!  "I know you're in there daddy", "you can run, but you can't hide"! "Let me in, I want to be with you"!

A while back, we got some steps @ the pet store for the kids to be able to get up on our bed.  Unfortunately, they are only 3 steps and now that I sleep on that twin size hospital bed next to our king size bed, Hanz still has a bit of a jump to get up after the third step and has fallen a couple of times!  Can't have that!  So, finally got Mark to make him some steps that will get Hanz up to my bed easier and safely!  For whatever reason, Bella won't go up the steps!  She'd rather go around to the other side of the bed where the old steps are and use those to get up on the king size bed, then she'll hop over to mine!  She does enjoy munching out on the corner of the wooden steps though!  Here's Hanz taking a trial run!

 

 

As I'm sure y'all know by now, we adore our furry kids and they are great therapy for me to @ least temporarily forget about my medical set backs!  We sing to them and just spoil them rotten!  Fun!  Currently working on their Halloween costumes as we take them to Petsmart for a photo op on the 19th of this month!  Course a trip to see Santa will be in order in December!

My brother-in-law Jim came by earlier - he and my husband Mark have been taking some wood carving classes and I'll post a photo soon of some of their work!  Jim's and Shelley were able to come to Vicente's funeral Mass so that really meant a lot to us!

I've been doing fairly well, but recently have been dealing with a bout of bronchitis.  Soooo tired of hacking!  Made a doctor appt. and got a shot and some meds to start getting rid of that!  My PCP prescribed a different pill to take @ bedtime, hoping it would allow me to rest and not worry about getting up @ an odd hour to take a Clonodine.  Nope!  Didn't work!  This is the second time I try to take something else - woke up @ 5 am having a minor bleed from my mouth.  UGH!  To boot, while the Clonodine does work, it dries my mouth so much, so I drink more water, so I need to get up in the middle of the night to use the bathroom - vicious cycle!  Again, what part of this miserable life is Humana not understanding I need to get fixed?  I do have some mouth spray made by Biotene that helps, but ugh!

So our battle of appealing the claim to Humana continues and I absolutely must try and work with my therabite to try and get my mouth open wider so the plastic surgeon and oral surgeon will be able to get some work done in my mouth in November!  Sent a letter to the 7 North nurses station that takes such awesome care of me @ Swedish that I hope to see them soon!  I've never been so well taken care of - they excel @ patient care and have always made me feel special!  Kuddos to them!  Ok, gotta go - guess who's pawing @ me to get off the computer?  Hanz!

Thanks everyone for all your prayer, love and support!  I know I am truly blessed and love my life (except for the avm)!

We have the two cutest furry kids in the world, I enjoy my family, friends and my work - I just want to feel well enough to function properly and enjoy a movie, eat what I want and have a drink once in a while!  I miss that!  With all the meds I'm taking and the bleeds, I can't risk not having all my wits about me (yes, insert joke here)!  I miss the times Mark and I would play card games and drink White Russians!  Mark would always say, "Hey, what about a White German"?  Not well.

Went to the library earlier to return some books and pick up a few more. 

Here's my current read - we grew up watching and enjoying The Flip Wilson Show! Have given my Nook a break, and lately the free Friday books offered on the Barnes & Noble Nook blog aren't that great, but I look forward to some good books coming out soon!  I almost sure one of my favorite authors P.C. Cast has a book coming out soon, as does another author Celia and I enjoy - Diana Gabaldon that has the Highlander time travel series of books!  My stamp table has too much junk on it that I haven't felt up to cleaning the clutter to stamp out a card.... I'd love to do one of my work in progress counted cross stitch, but don't want to risk having a bleed on the fabric.  :(  Soon I hope to resume that hobby!  Ok, enough of all that!  Anyone seen the movie GRAVITY  yet?  I'd love to see it, but just not up for it - would probably fall asleep if I sit still too long.Take care everyone!  Much love and hugs to all!
I may tweak this entry again and I hope to keep updating it with some good news soon!

Cyndi
P.S. Saw this on Facebook and wanted to share!

Heading off to bed where I'll usually pop in a dvd of my favorite show or one of my favorite Twilight Saga movies!

 

 

 

 

 

 

Yikes!

Well, heck!  We are currently without firewalls on our computer - hope to get them back up by Friday - so if you see any ads on my blog - esp. with Obama on it - it was not my doing!  Eeeeeek!  I can't seem to even get into the previous blog entry to edit it, so we'll see what happens!

Fear of sneezing.

Hi again!  How is everyone?  Hope you are well and doing all the things you enjoy!  I'm going to try and blog a bit while the rest of the household is asleep!  Especially Hanz - he really doesn't like me sitting @ the computer when I could be paying attention to him!
As you know, I've been having bleeding issues lately - apparently even though I'm "done" seeing Dr. Yakes, I still have tiny capillaries that need to be cauterized or resect by the doctor who will be doing the next stage of my surgeries!  We have been trying for several months to get all my paperwork in order so I can get scheduled to begin this next round of surgeries, but it's been one thing after the other that hasn't gotten us there yet.  Unfortunately for me, that means I'm still having bleeding issues!  The worst is not knowing when these bleeds will happen - I just had that one July 3 and it was bad enough that I immediately went in to get a blood count to see if I needed a transfusion.  I should have gone ahead and gotten it, even though I was @ a decent level.
Wed., July 10th I had gone in to work, and couldn't decide what to do for lunch.  I went to the Wal-Mart near work and was looking around, when I felt a sneeze coming on.  I dread sneezing, because many times that triggers a bleed. (Although there are times bleeding can start when I'm sitting still)  Sure enough, after sneezing I touched my chin and had blood on my hand.  I wasn't too far from the ladies room toward the back of the store, so I made my way there as soon as I could.  I barely got in and could already feel blood coagulating in my mouth. Made me want to gag and I leaned over the sink to spit it out!  A lady was in one of the stalls and when she came out she washed her hands and hadn't really glanced over to what was going on w/me in the sink next to her.  When she did, she asked if I needed help.  I told her I had already called my husband, but she said she really wanted to call 911.  She walked out and I guess got a Wal-Mart employee - she was a manager and agreed that they would call 911.  Mark had just sat down to have lunch w/his brother Jim @ a barbeque place when I called - but he got to me very quickly!  The first lady kept handing me paper towels as I leaned over the sink bleeding all over the place.  I kept trying to rinse my mouth by cupping water in my hand.  Meanwhile gobs of coagulated blood were clogging the sink, and I would try and grab a handful of paper towels to throw it out, but that would make me gag!  The one lady asked if I needed a chair and I said yes.  I thanked her for helping and wondered how all the blood wasn't freaking her out!  Between the first lady and the manager, they were trying to help with blood everywhere!  Mark arrived and asked if I had any gauze - I usually pack my mouth with it to try and stop the bleeding.  Told him there was some in the car, so he ran out to get it and finally seemed to get it under control.  It seemed to be coming from way in the back of my lower left molars.  It kept coagulating, but I would pull that because it was gagging me and the bleeding would continue!  Somewhere along that time, the EMT's arrived and started trying to help.  I had sat down on the chair by this time, but still leaned over the sink bleeding.  I was feeling light headed and apparently passed out!  Mark heard one of the ladies say she thought I wasn't breathing - so he removed my trache cap!  I think @ this point the EMT's had cut my kerchief off, as it was in the way and all bloody.  I wear it over my trache to keep dirt out, so a lot of people aren't aware I even have it.  That's unfortunate, because of what happened with all the bleeding!  Thank God Mark thought to pull my trache cap - he saved my life!  I started breathing again and the EMT's started an IV by putting a needle on the back of my right hand.  Too bad my mediport wasn't accessed, they could have used that.  I do not like going to the hospital, especially here locally, but had no other choice with the way I was feeling.  Got put in the ambulance and headed to the hospital, with Mark following in his car.  He notified my family and they all met us in the hospital emergency room. 
Right away I was put in one of the rooms in Emergency, and one of the nurses helped take off my clothes that were soaked in blood.  She cleaned my hands that of course were also all bloody.  My mouth is packed in gauze and I'm thirsty and can't have anything to drink.  Or at least I don't want to because I don't know what's going on in my mouth until I would be able to pull the gauze out and rinse.  Course no one wants me to do that yet.  My primary care physician Dr. Boynton is notified and arrives soon.  My family asks him when I can remove the gauze and he said to wait @ least 4 hours.  It's freezing in the ER, my sister Celia is calling up to CO to ask what the hold up has been to get me in for my next appt.  We need this bleeding stopped completely!  My brother-in-law Jim peeked in @ one time - I waved a greeting.  There was only 2 people allowed to be w/me, so family was taking turns.  At one point, Celia looked out of the ER room and there was no one around.  Seems there was a major emergency, and all staff was trying to help!  I can understand that and waited patiently.  I probably got to the ER about 1pm and wasn't taken to a room until 7pm or so.  I was admitted to ICU because my doctor said that way I would have better care in case I had any bleeding issues.  We sent mom home and Celia stayed with me while Mark went home to get a few of my things and checked on the kids (Hanz and Bella).
I kept wanting to remove the gauze from my mouth and rinse so I could have something to drink.  All I had all day was a couple of pop-tarts and some coffee while @ work!  Mark had to go to my work and get my purse (I had put my license and debit card in my pants pocket) and my "what if" bag that had medical supplies!
The nurse on duty wanted to call my doctor to be present when I removed the gauze.  I told him that wasn't necessary - but did wait until Mark came back.  He knows best how to help me with everything I need!  By the time I was able to remove the gauze in my mouth it was almost 8pm!  I knew from a previous visit that there is a thing that is like a stick w/a sponge @ the end that I could clean my mouth up with, so I asked for that.  Of course I was given a liquid diet.  The only thing I wanted was the teeny cup of apple juice.  I know, if I'm complaining I couldn't be feeling that bad - but when you are feeling that bad, it really sucks when you can't even feel better by getting anything decent!  Mark insisted I try the chicken broth - gross!  Got a popsicle that I told him to eat because I can't open my mouth wide enough to eat that - and orange jello.  Ugh.
I kept asking for someone to access my mediport and no one wanted to go there.  Meanwhile I am hooked up to all these wires w/a heart monitor and a blood pressure cuff on the left arm.  The nurse puts those darned hose on my legs that are hooked up to more wires for circulation.  They tell me, "try to get some rest".  Connected to all those wires and guess what?  I have to go to the bathroom.  Celia had asked me when she was there earlier where the bathroom for the room was.  I pointed to the toilet chair.  Are we having fun yet? 
Someone from the lab came by to draw blood - ironic, huh?  Mark was still with me and again asked the nurse to access my mediport.  Finally they found someone to do this and I know I'm complaining, but OUCH!  This nurse did not know what she was doing - the last time my mediport was accessed in CO - I think it was nurse Jason and I barely felt it at all!  Soon after this I had asked Mark to go home to be with the kids.  Don't like them being home alone so long.  I have to show you my baby Hanz sitting in my spot on the couch, keeping it warm for mommy!  That's one of the hard things about going to CO or having a hospital stay here - being away from my babies!

Then later, he kept my bed warm - so precious!

Of course Bella was nearby on the king size bed! "Where's mommy"?

In case you don't know by now, my kiddos are pretty special to us!  So Mark's gone and I decide to watch tv.  I don't even have the strength or will to even read my Nook.  I am freezing and asked for an extra blanket several times and never got it. 
I was given 4 units of blood through the night and first thing in the morning, Dr. Boynton came in to see me.  I asked if I could go home and he said no problem, he would write up my orders for release!  Yay!  Got home about 10 a.m. - Hanz and Bella were so happy to see me!  Got settled in and communicated a little bit on Facebook to let friends and family know the latest.  I didn't want to spend any time on the computer that I could be enjoying Hanz and Bella!  Mark as always is amazing!  Right away, he fixed me a bowl of grits - nice to have something warm in my stomach!  For lunch I asked him for a baked potato, with shredded cheese and sour cream!  Normally, I would have tried to go in to work the following day, but I really was feeling weak and needed to regain my strength!  Mark had spoken to my supervisor right after the bleeding incident and had no problems there.  My supervisor Kathleen is awesome!  I texted her later to tell her I would probably wait until Monday to come in and she answered to take more time if needed.  I'm glad this bleeding didn't happen @ work!  Mark said he hugged the two ladies that helped me after the EMT's took me on the gurney.  We'll go back after a while so I can thank them personally.  I have been blessed to be surrounded by angels all the time!  Can you imagine if I had been in that bathroom alone and had passed out?  Well, enough for now - I'm signing off to go check on my kiddos!  I'm sure as always I'll tweak this here and there and add info or photos, but just wanted to post this so everyone could know the latest.  For now, I have a tentative appt. to see Dr. Robinson (plastic surgeon) in CO on Sept. 11th, but we're trying to get something sooner!
Thanks for all your love, prayer and support!
Cyndi

 

.... and the nightmare continues.

Hey!  Happy 4th of July everyone!  Hope y'all have a safe, fun one!  We'll probably just hang out here @ home, even though we've had a couple offers to join friends and family.  Unfortunately, I had a major bleed this morning as I was starting to try and brush my teeth @ 6:30 a.m.  I had just leaned over the sink to rinse my mouth and I saw blood.  It started coming fast and I called out to Mark to come help.  He was still asleep, but heard me and came right away.  I couldn't tell exactly where bleeding was coming from and no matter how much I tried packing my mouth w/gauze, it just seemed to soak through right away and kept bleeding!  I could tell it was spurting out and I finally got a hand mirror and it seemed to be coming out from under my tongue!  After about 5 minutes or so of it finally stopping, I decided since it seemed under control, that I needed to shower in case (heaven forbid) I ended up needing to go to the hospital.  I don't like the showers in the hospital I go to a few blocks from our home - I need a hand held shower head to maneuver water away from avm area.  Due to partial paralysis on my left side, it's hard for me to shut my left eye, so don't want to get soap in it!  Anyway, called my primary care physician to get some lab work done and get a blood/hemoglobin count.  Didn't get results until about 1pm - still anemic, but unless actively bleeding, then didn't require a transfusion.  As I figured, my doctors office would be closed Friday, so I asked if they could fax the orders for a transfusion where I have them done @ the Spohn Cancer Center.  That way in case I had any more bleeding, @ least the orders would be in and I could go in for a cross match and then schedule a transfusion.  My husband Mark had already put in for some time off that was to start this afternoon, but w/my bleed, neither of us made it to work in the morning.  I went w/him for a follow up doctor appt. he had - as I didn't want to be home alone in case of another bleed.  UGH!  Ok, I've been feeling so lost and in limbo lately - since I haven't been able to schedule an appt. w/the dentist/plastic surgeon that will continue my next phase of treatments for reconstruction!  I had written to Kelly, Dr. Yakes P.A. to ask why I was still having bleeds.  I'm writing her answer so that everyone can also understand why this is happening. Let me just say how fantastic Dr. Yakes and his team are!  From the P.A.'s to the patient coordinators, office manager (Hi Mona!) and everyone @ Swedish goes above and beyond to help the patient feel well taken care of!

     Kelly wrote: "Hang in there girl, we will get you through this!! You can do it.  Dr. Yakes said the bleeding may be from the swelling pushing back from the treatment, so give it a little more time.  There are also very tiny little capillaries next to the cheeks and gums, in your case, very close.  These are too small for Dr. Yakes to treat, but different in you as opposed to another person with no AVM.  Hopefully Dr. Robinson can get in there and resect what is left and close those areas up to prevent that in the future.  I know you are constantly in fear, and I still want to remind you that you will not die from this bleeding, you know what to do and you have good doctors there to see you at those times in need!  Wet gauze, breathe, relax and then see your doctors.
As far as us you can see us in 6 months for MRI and arteriogram.  If you are in recovery from a surgery or it's not convenient, then you can wait longer on this.  Keep us updated to how you are doing".
Kelly

One of the things that has really helped, is recently joining an AVM Support Group on Face Book!  Wow - just knowing that you aren't alone and that someone else completely gets what you're going through is a tremendous help!
Every time I have a major bleed, it freaks me out and I don't want to be alone or stray too far from home.  Glad it didn't happen @ work!  As it is, I really limit my outings to work, to Barnes and Noble to get free WiFi and my free Friday book and to Petsmart to take the kiddos on an outing!  That's it!  Oh, and to the grocery store a few blocks from home - usually w/Mark.  I just can't see myself trying to take in a movie.  What if I start bleeding and I'm sitting there in the dark!  Can't eat popcorn - limited to what I can eat w/the avm stuff going on in my mouth.  If I sit still too long I'll fall asleep from never getting enough sleep @ night and pain killers that make me drowsy!  The only movies I've ventured out to see in the last few years are all the Twilight movies, as I'm a Twi-hard! (One of my besties @ work got me this cross stitch pattern!  She was putting in an order from Mystic Stitch and they had a sale, buy 3 get 3 free!) Don't know when/if I'll do this, but it will be time consuming that's for sure!  Yes I know Kristen and Rob aren't together anymore, but they'll always be Edward and Bella!

 During the Breaking Dawn 2 movie - it hadn't started and I was already falling asleep!  I had to take a steroid to stay awake!  I just feel safer and more comfortable @ home.  Besides, I really don't like how people gawk at me when I'm out in public.  I didn't think I was THAT hideous!  Where are the parents of these kids that see me and just stop in their tracks and stare at me?  I know they are innocent, but it makes me feel like crap.
I really don't want to get back on anti-depressants, but I don't like who I am w/out them.  Unfortunately, being on them causes me to have very strange dreams and have restless sleep!  Mark would tell me I was kicking and squirming all night!  I really try and psych myself into having a better outlook, but it's hard when my left ear is draining, I'm drooling, hacking or bleeding.  I can feel the coils that are still in until I get debulked under my chin.  Can't wear make up to look any better and I just feel like my life has been on hold now for 10 years!

Come on!  I have to put something "Big Bang Theory related" in my blog!

  I miss Mark-a-ritas - can't drink, I need to have my wits about me in case of a bleed!  I do have things to be grateful for.  I have a trache, but don't need it to breathe, just to be intubated. (I'm limited on how wide I can open my mouth right now, due to avm). I know some people need their trache to breathe and need to be suctioned daily - so @ least I'm not having to go through that on top of everything else!
I'll be tweaking this blog entry, as I always seem to do w/all my other entries!  I need to put in some photos and I wanted to tell y'all about all my besties that make my life a little easier by being so fantastic and supportive!
I'd better call it a night.  Dread going back into the bedroom - fear of having a bleed during the night.  Mark usually falls asleep on the couch and comes to bed about 4 or 5 a.m.  I can't fall asleep on the couch since I need to be hooked up to my humidifier on my trache and sleep almost sitting up in my hospital bed.  If I do doze off on the couch, I end up having a hard time "waking up" and feel like I can't catch my breath!  Thanks for putting up w/me!  If you're healthy, don't ever take it for granted!  I'll check back soon!  Hanz already came by earlier to tell me to get off the computer!
Cyndi
I just had to put this in here - cute, huh?

Hurry up and fix my lip Dr. Robinson!  I want to kiss my furry kids! (This isn't one of them, but still, you get the gist)!
Ok... here's my kids!  Bella is two!  She snores like me and she is daddy's girl!  If I baby talk one of them, the other one has to run up to me as if to say, "me to mommy, me too"!

 Hanz is four!  He's mamma's boy.  Usually hangs w/me on the couch and in bed!  He's our "special boy"!  They are such great therapy for me!  We just adore them and can't imagine our lives w/out them!

 

 

 

 

The trials to which the Lord subjects you and will subject you are all signs of divine love and are jewels for the soul. Winter will pass and the never-ending spring will come, all the more rich in beauty as violent were the storms. St. Padre Pio

 

Ok, so I'm having a hard time ending the tweaking of my latest entry!  I was telling my husband Mark earlier, that the other night as I got into bed, I couldn't decide whether to read or watch TV.  I ended up getting my phone and checking out You-Tube.  There was an artist that I love(d) - he is no longer with us - Dan Fogelberg.  Passed away @ the end of 2007.  If you aren't familiar w/him or his music, please take time to research him, I don't think you'd be disappointed.  I was lucky enough to see him in a live dinner theater atmosphere while I lived in Miami while I went to college for a few years.  Such a shame he's gone, but his music will live forever!  Kinda reminds me of how Taylor Swift writes - you can just envision what happened by listening to the lyrics.  Definitely telling a story.

 

 

 

Spouse/Caregiver

Hi Everyone!

Well, It's been a little over a week that I've been back from Denver and doing well.  Doesn't mean I'm happy, but @ least I'm not bleeding!  For those of you maybe not too familiar w/my situation (Hi Lindsey!), for a while I would have severe bleeds from inside my mouth.  This is spontaneous and has happened so severely @ work that I've had to be transported by ambulance to the hospital.  I'm really trying to make a conscious effort to feel better about my whole situation.
Even though I got the "all done until a check up in 6 months" from Dr. Yakes, I can't even enjoy that since I've had a few bleeds since leaving Denver.  So am I REALLY done, is the bleeding just a "hic-cup"?  Let me just say that I love my life. Everything about my life is awesome, except for the avm.  I am very blessed to have a family that loves and support me,
(here are my nephews Mark and Davis)

 

 

 

 

 

 

 a fantastic husband who is my soulmate and an amazing cook, the 2 cutest furry kids in the world and terrific friends and co-workers! 
Here is one of my favorite photos of Mark and Hanz!

This next one was taken the day we got Bella!  Probably the only time she was smaller than Hanz!  They are Brussels Griffons, like Verdell in the movie As Good As It Gets with Jack Nicholson and Helen Hunt!

I love comedy (Big Bang Theory),

 

 

 

 music (Taylor Swift - LOVE her!  Since I can't hear well right now, I enjoy blasting her cd's in the car - all her songs are so cool!  Did you know her song Back to December from her Speak Now cd is supposed to be about what happened between her and Taylor Lautner from Twilight?  I loved seeing the two of them together in the movie Valentines Day!

 The Band Perry - Neal, Kim and Reid)

and I enjoy several hobbies: cross stitching, rubberstamping, calligraphy, reading, blogging). I've always loved to write, so this gives me an opportunity to do that and to vent and share!
Did you know that I have an Aunt that is about to celebrate her Jubilee in a few weeks with the Sisters of St. Mary in Oregon?  We grew up close to Sister Juanita, she is one of my moms younger sisters - she was my inspiration for learning calligraphy!  Sister J. did all our wedding rehearsal dinner menu's in calligraphy @ Edelweiss!!  Here she is and I'm including a photo of her bestie Sister Adele!  I really am blessed to have such an awesome family!

As some of you fellow avm-ers know, having embolizations results in swelling and steroids are needed to reduce swelling.  I used to love steroids - it meant energy and feeling better!  Unfortunately being on steroids for any length of time also means a huge increase in appetite, can't wind down enough to get a good nights rest, skin drying to cracking/splitting and losing bone density.  My potassium is always low lately, so I take extra potassium - if I take the liquid form, it tastes like eating a cube of salt (even w/the mango flavoring from the pharmacy) and the pill form is huge and chalky!  Ugh!  I also take extra iron since I have/had frequent bleeds and calcium to help my bones and hair!  Everything on the left side of my face is messed up due to the avm. 
I recently came across this photo - this was when Dr. Yakes aggressively went after a huge artery I had - ugh!  This took several years to heal!  Mark would do my wound care between sessions when I would go in to have it cleaned - and had to have it covered to keep germs out.  It was hot and uncomfortable.

My family always tells me how "brave" I am - what does that really mean?  I feel like I don't have a choice but to go out into the world and live my life.  What's the alternative - cowering in the corner and shutting down?  I'm sooo tired of people staring @ me when I'm @ the grocery store, or I go out to grab a bite to eat.  Wish they could be a little more subtle about it.  People need to explain to their children that we all don't always look well due to complications.  Please educate kids!
 Avm's don't go away either - having one means seeing it through until a doctor can get rid of it.  If you can find a doctor that is willing to take you on as a patient - believe me, there's been a couple of doctors not wanting to touch this and can't blame them either!  I feel it is a curse.  It isn't something that can be dealt with easily - it's an ongoing process that can take years of treatments.
This has been extremely difficult on my marriage - how could it not be?  Mark and I will be married 22 years in December.  Here are some old photos I ran across. I wish I could wear makeup - someone asked recently if I could wear foundation.  No - my skin is soooo sensitive right now - even if I could apply it, removing it might cause irritation or bleeding.  I have lots of little blood vessels all over right now that hopefully will be taken care of later.  The only thing I might be able to do is wear some eyebrow pencil and some eye shadow and mascara. For a long time I was very weak from losing so much blood, that I didn't feel well enough to even think about trying to improve my appearance.

Marriage is difficult enough on it's own, without throwing something like an avm into the mix!  If I'm going through hell, my husband Mark is right there with me.  He's had to clean up the bloody mess I make when I have a bleed, as I'm certainly not feeling well enough, or can't bend over to get it done myself!  He's handing me gauze to pack my mouth with as I lean over the sink trying not to get blood everywhere! 
I've been hacking lately due to allergies, so I asked Mark to replace my trache.  I'm so lucky he does these things for me - I know men that won't even carry their wives purse to help them, much less clean and change out their trache!  My friend and neighbor Terry is a respiratory tech, so she has always been available to us for any help we need in that area!  Back to Mark being my caregiver ....
Of course there's times we lose our patience and lash out - no one could blame Mark.  It isn't just a matter of my saying, "Oh, I don't  feel well, but I'm going to be as nice as I can anyway."  When you're gushing blood clots or in pain (or both), all you can think of is stopping it in any way possible.  I don't like to wander too far away from home, as of course that is where I can be most comfortable.  I'm doing good to get to work and back.  I pull a hobby cart full of anything that will make my life easier every day to work!  I have meds, snacks, books, magazines, cd's - anything that will help get me through the day!
Yesterday after work, I had asked Mark if we could take our kids to Petco and Petsmart, as they hadn't really had much of an outing lately.  It was really too soon for me to go on an outing after my last treatment.  It's been so hot out, that we don't like going out in the yard to walk Hanz and Bella on the leash - and this way, we all get out of the house for a little fun and stay cool too!  I don't know why I even bother w/Petco (diversity), as their employees are never friendly or helpful.  I've even spoken to the manager when I'm seeking a particular item, and he's just as bad.  Anyway, by the time we left Petco and then went to Petsmart - (where we were cheerfully greeted by employees), I was already planning what I could eat the minute I got home!  Yesterday was my last day on steroids and I knew I had to have food right away when I got home!  Soon as we walked in the door, Mark started making me a baked potato (loaded) while I had a peanut butter jelly sandwich and then I had a big bowl of Basmani rice!  I have to eat soft foods due to losing some crowns and some of my teeth are damaged from the bleeds and have cracked!  I am limited to how wide I can open my mouth w/all the avm things going on, so it's been difficult to eat, brush and function normally. 
Thought you might find this interesting.  The following is a description of "phase one" of the proposed treatment plan that Dr. Robinson (Cosmetic Surgeon) wants to start my reconstruction with:  Keep in mind I hope to be able to hear again on the left side and need an earlobe reconstructed, amongst other things.

Surgical removal of erupted tooth (Tooth #1,#2,#3,#18,#19,#20,#21,#22)
Surgical removal of erupted tooth (Tooth #12,#13,#14) possible.
Blepharoplasty, lower eyelid
Adjacent tissue transfer or rearrangement, forehead, cheeks, chin, mouth, neck;defect 10.130 sq cm
Repair lip, full thickness; over one-half vertical height or complex.
Established patient-history, examination, counseling and ordering lab or diagnostic procedures.

Since the left side of my face has been so damaged with embolizations, Dr. Robinson said he may be able to use some of the skin under my chin in that area.

In speaking to my brother-in-law Greg, DDS., he's told me how some patients have all their teeth removed @ once!  I can't even begin to imagine.  It's bad enough I have to have any removed, not to mention what is going through my head is - will the blood start gushing upon removal?  It shouldn't, as I'm supposed to "be done" with the avm, but this thing has a mind of it's own.  How can I not be concerned or anxious?  I'll be living on mashed potatoes and liquids for a while until my gums heal and I can have "temporary teeth" until possible titanium implants later?  Right now I drool due to my split lip - can't wait to get that fixed.  Hard to use a spoon and must use a straw to drink from a glass.  I can drink bottled water from small opening.  All these things are going through my mind and I'm having to deal with figuring out what I can eat, am I drooling, bleeding, hacking, etc. - so my primary concern isn't always being the best patient possible.  Poor Mark works all day (out in the hot sun a lot) then comes home to help take care of me and cook and keep our home running!  He feeds, bathes and cleans up after our furry kids Hanz and Bella.  They are essential to my recovery - they make me so happy and help me forget what I'm going through, at least for a bit.  They are both have a good disposition (esp. Hanz) and we adore them!  Bella is a live wire and we can't help but laugh @ her antics!  My job is to snuggle and love them!  Here are my kids, making sure mommy knows they love her!

My sister and her husband Greg have been instrumental in helping us get through this terrible ordeal.  They help monetarily of course, but they supply us with lots of love, prayer and time!  For the most part, I'm a happy person, but going through all of this crushes my spirit @ times, and I sometimes wonder how I'll ever get through it.  I do realize there are avm patients that may not be as lucky as I am or are going through this on their own - but believe me, this is the toughest thing I've ever been through.  I'm grateful that I don't have children to worry about - can you imagine having  to go through this and have to be trying to find someone to take care of my kids when I'm in CO!  We have awesome neighbors that take care of Hanz and Bella when Mark accompanies me to CO - breaks my heart to leave my babies!
In my mind, how I feel and how I look are two different things.  When I feel well enough and I'm enjoying music - I'm not thinking about how I have facial paralysis - how I can't sing along (hard to understand what I'm saying with my split lip and bulk from avm that hopefully will be debulked soon) - not to mention I have hearing loss on my left side.  All I can hear on the left side is my pulse.
I am grateful not to have had any bleeds for almost 5 days.  Mark has a pulled pork going in the crockpot that smells wonderful!  I believe there is some acorn squash and fries to go with it!!!  I'm doing some laundry and need to go check on the furry kids to make sure they're not into any trouble!  I went to Mom's earlier and Mark texted me that he found Hanz and Bella with some bread on their bed.  One of my step-sisters had a dog that ate a loaf of bread and died, so of course I was horrified to know Mark had found bread on the floor the kids had gotten into!  Luckily, I don't think they ate any of it before he found them!  Whew! 
I may tweak this here and there, but I've been wanting to write some more about how I'm feeling and what I'm going through right now.

Take care!
Cyndi