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.
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!
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.
I may tweak this entry again and I hope to keep updating it with some good news soon!
P.S. Saw this on Facebook and wanted to share!