June Colorado Trip

Greetings to all, how are you? Well, Celia accompanied me on this past trip for my embolization and everything went very well! Course there was a little mishap or two, but luckily nothing major! Left Corpus Christi early Tues. morning of the 19th, and the weather was nice and sunny when we arrived in CO. Picked up the car rental and headed to lunch @ Whole Foods! Every 3rd visit to CO, I see an ENT so he can check that my air passages are clear before having the embolization, so I had an appt. w/Dr. Lipkin @ 2:30 p.m.

Headed to Swedish hospital right after that to get checked in! Dr. Yakes P.A. Kelly took my vitals and got all my paperwork ready. Andie, another of Dr. Yakes P.A.'s peeked in to say hello! Then Dr. Yakes did too! Gave me a hug and said we were winning! Another of Dr. Yakes P.A.'s Mandi, walked us over to be admitted through the emergency room, so once we finished off that paperwork, Celia and I headed t0 finish the admitting process! I was still in my shorts and polo when Celia noticed my mouth was bleeding! I rushed over to the bathroom sink and sure enough! The nurse quickly got some gauze and I started trying to pack my mouth and get the bleeding stopped! Dr. Yakes Phy. Asst., Kelly was still in the room and she said something like how can you tell where to pack it if you can't see where it's bleeding from! Yeah, that's what I've been saying all along! Anyway, got that stopped w/out too much trouble - defintely the place to have a bleed if you're going to have one though!

Got settled in and each of us ordred a salad for dinner that I never got to touch due to the bleed, darn! Oh well. Had some breathing treatments done to help the bronchitis I had - so Celia headed to the hotel and we had no idea what time I would be having the procedure in the morning.

Had a nurse take me down to have another chest x-ray in the morning, to see how the bronchitis was doing. Turns out, a patient that should have shown up @ 6:00 a.m. for her embolization showed up 2 hours late, so there was an immediate opening for a procedure. Yikes! I didn't know what to do - even thought about waiting another day to give my bronchitis a chance to get better. Anyway, last minute - went for it and poor Celia shows up @ my room later and didn't know where I was! I hear Dr. Yakes used 10 cc's of alcohol inside the troublesome spot inside my mouth, so that looks like a war zone right now.

I get to see a lot of the same nurses of course and had nurse Laura again - she is sooo funny! Just the right amount of sting in a zing she'll throw @ you and make you laugh! She's an excellent nurse though and I always feel very safe with her on duty! Here is a photo of me with nurse Monica - she was a doll! Everyone @ Swedish is so professional and just super @ their job! You just always feel they really care about all their patients! Here is a photo of Resp. tech, Chris Jenky! He is cool - knows his stuff, always in a good mood and has a good sense of humor! I was familiar with him already, so I feel right @ home when I'm @ Swedish!

Sometimes I think it's ridiculous trying to blog and explain this avm to everyone, when I have it and don't even completely understand it myself! I had someone tell me a couple days ago that my face looked better. Well, it's just not a matter of looking better after each embolization - there is still fluids, tissue and stuff that will be debulked and until then, I don't think there will be much improvement! Right now my goal is to not bleed profusely spontaneouslly! I've felt so badly that I've been so out of commission I've missed out on some important family events! Our two nephews in Ohio recently married and I feel I completely missed out on all the goings on because of this darned avm! When the bleeds are happening, there is just nothing else to do but focus completey on that! Now that I've been doing better - I can step back and go - really? How did all that happen and life just goes on. Poor Mark - I've felt like I'm not here for him - I was so weak before, it was enough that I got up and made it to work and home - much less participated in life! I just hope things continue to improve and that I've made a significant turn around where I won't keep having so many set backs with my health!

As always, my friends and family amaze me with their love, prayer and devotion to helping us through in our time of need! Love to all!

Cyndi

I hope to put some more photos up when Celia sends them to me! I have her to especially thank for being so giving with her time, attention and compassion. I used to be bothered by those signs @ the gift stores that said, "my sister, my friend" and I used to laugh about it because until recently, Celia and I had not been especially close. Unfortunately it took having to deal with this avm to bring us closer and I have say I really enjoy the time now that we have to talk and share common interests! We both love to read and Celia generously replaced the cover of my Nook that my Bella had gently been noshing on. I had bled all over the original cover that I had gotten for my Nook, and actually found the same green cover again!

Yay! Poopie Poopie!

Hi Everyone! How are you? I am fantastic! Before we go any further, let me explain the title of this post - apparently, when our nephew Mark was a little boy and would get excited about something, he would say, "Yay! Poopie Poopie"! I'm really excited about the fact that I have not had a bleed - just thinking about going through that makes me cringe and wonder how I got past that! Let's hope we don't go there again anytime soon! Up until almost 2 weeks ago, I had felt very weak and was barely able to get myself to work and home. It's only been since I've been back and recovered some from this past procedure in Colorado, that I have felt well enough to - well, feel half way human! For a while since I was having so many bleeds, that was really making me very, very weak and unable to do much for myself @ all! As I've said though, my family and friends have really stepped up and done so much for me - things I couldn't do on my own! From basic things like taking me to a doctors appt., or just listening to me talking about how I was feeling or always volunteering to help in any way! My sister Celia always reminds me that I'm not alone and never will be. Even my co-workers that I don't know all that well, have taken the time to come tell me that they are there for me if I need them. To please let them know if they can help in any way! Wow! Again, like Celia tells me, I'm surrounded by angels that God has sent to help!

Had a culture done @ woundcare last week, since I'd been having some issues w/drainage and such on my left ear. Got the results on Sat. morning - I have a staph infection as well as a pseudemonous infection. I should have known - I was also trying to get by with not using my last few Oxycontin painkillers, but had to break down and use them because of the pain the infections were causing! Darn it! I also hated to bother my primary care physician, but my husband Mark kept after me to call him and let him know about the infections that wound care had informed me I had. They would be notifying Dr. Boynton on Monday, but I finally gave in to calling the doctor Sat. evening - and luckily I happened to have the 2 oral antibiotics that Dr. Boynton wanted me to get started on! This way @ least I'll get a head start on some meds, before he calls Quorum in San Antonio if he decides I need to go w/an IV Antibiotic. This will also mean having Nurses on Wheels come and put a needle in my mediport, that way when the IV meds do come in, Mark can get me started on them having access w/what the Nurses on Wheels have started. Believe me though, I am ok in dealing w/an infection - that is certainly something that can be taken care of pretty easily! I'll take that any day over having a bleed of any sort!

Another reason I'm excited (not sure that is the word I want) is that last week Wednesday, ELLEN had a guest on her show that will be on a new reality show called Push Girls. The guest is a 32 year old girl named Mia Schaikewitz, that says @ 15 she was in high school, healthy ... until she had severe abdominal pain and was taken to the hospital thinking it was appendicitis. Mia went on to say something about her legs feeling heavy, and an MRI was done, revealing that she had an avm in her spinal cord that had ruptured, causing her from then on to be wheel chair bound. YIKES! So many thoughts are running through my head, like, can't someone help her now? I've always known that as much as I'm going through - there are people worse off - I blog partially because I feel so bad that I'm "out of commission" because of what I'm going through and can't do all the things I enjoy doing or being due to this avm! Well however much I've been through w/all the bleeds, pain, swelling, etc. - how lucky am I that my avm has always been visible, even though I unsuccessfully sought treatment for it @ least 20 years before my sister Celia found Dr. Yakes through the internet! I wonder if there is any hope for Mia getting out of the wheelchair @ this point - if her avm is treatable. There is still so much I don't know about avm's and I have one!

Meanwhile, I think I might have mentioned in a past blog, that my mom Mary, her husband Vicente and my husband Mark had all gone to breakfast after Mass one Sunday, and had seen a lady that looked as if she had a facial avm. I had asked my family if they had approached this lady and they said no, they had lost track of her. Well, we ran into her again last weekend as we were leaving the same restaurant - and Mom, Mark and I approached the lady. She was with a young boy and actually I think she was waiting on her parents to join them. As I started to introduce myself and ask her about what looked like her having a facial avm, I got the impression she didn't completely understand what I was asking or wanting. Mark felt that what this lady looked worse than I ever have and we're actually not sure just by looking @ her what she may have. Her complexion was very dark - but never mind what she looked like - I worry if she is in any danger physically due to her possibly having an avm! What if it is damaging her heart, like the internal medicine doctor thought might be happening to me?! The lady tried telling us she was getting help or something to that affect. Didn't quite grasp what she said, but I'm hoping Mom and Vicente run into her again and maybe can give her family Dr. Yakes card!

I just wanted to put all this information out there. I need to add more to this blog. Will tweek it here and there when I get a chance. Meanwhile, here are some photos of our children! Took Hanz and Bella to Petsmart on Friday evening and ran into a Great Dane! Went on to Petco and here is Hanz looking @ the hamsters and Guinnie Pigs! Then that one photo of the kiddos on the couch with Mark - and just put in a few more, just because I love my furry children so much and they are so cute!

As always, thank you everyone for all your love and support! I was adding some stuff to this blog, but Hanz has already been over here several times to tell me to get off the computer - gotta go!