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!