.... 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.