Daily stuff

Hi!

I wanted to share something with all of you. Lately, I've been running across people again, saying "What happened to your face"! Or maybe not completely understanding what I'm going through - and it's important to me to educate everyone on all things avm! Of course I'm grateful for prayer and acceptance, but there are times it might help to have a more complete picture of what is really going on! I have to say though, that I know that even though I'm going through so much - there are people going through worse. I had a lady that called to reschedule her appt. today because she said she was in a lot of pain. I could relate to that for sure! This lady said she had cancer and had already had one breast removed, then had to have the other removed, and now had to have some lymph nodes removed and was told not to be lifting things because the doctor had cut too close to a nerve, and she had been helping her mom out in the yard and now she was paying the price experiencing the pain! So I know and am grateful that @ least I have hope and will someday be avm free! I certainly don't want to whine, and believe me, I do count my blessings! What really keeps me going is my awesome support team! From family that has been there for us and has supported us with prayer, emotional and financial support that is beyond anything we expected, but appreciate so very much! Mark of course is my constant support in every way! He always assures me we are in this together and takes such wonderful care of me! From just listening to me, to changing my dressings and doing wound care and making sure my humidifier has distilled water every night! He picks up my slack around the house, since I'm not always up to doing much! On a good day I help clean the kitchen and change out Hanz's pee pad trays! Normally, my main chore around here is doing wash! Of course Hanz is Mommy's angel! Just Hanz being in our lives has brought us so much happiness - he is one special puppy! We like to say that he "rescued us"! Everyone adores him and says how well adjusted he is! Super smart and cute and we can't get enough of him! He has done wonders for my over all well being in keeping my spirits up when I could be sitting home miserable w/all I'm going through!

One of the great things that has improved is no more real spontaneous bleeds! Not like before, when I would wake up covered in blood or sometimes that would happen @ work! I would be going about my daily routine and a co-worker would tell me I was bleeding from my facial wound! It has been very minimal that I've bled lately, and when I do, it isn't gushing like it used to be! So I know that Dr. Yakes is getting those arteries closed off, so the bleeding can be stopped quickly!

Unfortunately the one thing that I just can't do anything about is the pain involved! I remember when I first started having these procedures, I didn't have to even have any pain medication prescriptions filled @ all! Then I remember asking Dr. Yakes nurse @ the time - Julie LaBadie ... "as Dr. Yakes gets closer to my face in doing these embolizations, is this going to involve some pain"? Her answer was, "Well, you may be surprised ..." - but something just told me that it wouldn't be that easy. I know a couple years ago, Mark wondered about how long I would be taking the pain pills and believe me, no one wanted to be off of them more than I did! Being on this medication put a halt to the MARK-a-ritas we love so much around here! For me anyway! At one point, I was trying to use a "pain patch", which ended up "burning" my sensitive skin, and I made the mistake of thinking I could drink a Mark-a-rita and ended up throwing up and bleeding from the force of throwing up! Lesson learned! It took a long time for me to have any tequila after that! Every once in a while Mark will put a dollop or two of some Mark-a-rita in my glass now when he makes nachos! Or maybe I can handle just ONE bud light lime w/some pizza, but usually only half a beer! I know some of y'all don't drink out there, but down here in South Texas, we enjoy our brewskies! :) Anyway ... each time Dr. Yakes works on me and does an embolization, he may use anywhere from 2cc's to 24 cc's of alcohol and that means swelling and PAIN! It got to a point where I just wasn't able to get to the level of comfort that the nurse could get me to while I was in the hospital! I had a fabulous nurse named Justin during one of the times I got stuck @ Swedish for a week w/an infection - and he was nice enough to chart my meds for me to where I could understand what and when I was taking what I needed! I also had to see a pain management doctor here that felt that I needed to take my main pain medication THREE times a day instead of only two! There is just no way around having to take the pain meds and sometimes my dose falls @ taking it @ 4:00 a.m.! Short of setting an alarm, I sometimes sleep through that time (wonder why?)so I end up taking that medication several hours late when the alarm goes off for work! So I'm already starting my day off in a bad way - grumpy because I'm in pain and having to get dressed and get my day started as I'm waiting for the pain meds to kick in! Poor Mark, I just mess his sleep schedule all up! Sometimes he sleeps through my antics, but a lot of times I wake him up as I get up to take meds or can't sleep due to being wired from the steroids I'm on! I did not go to sleep until 4:30 a.m. Saturday morning! Not to mention the steroids make me soooo hungry! I want to keep eating in bed and then I'm drooling orange candy corn on my nightgown and sheets! All this while the loud sound of the humidifier (that sounds like an air compressor) is going! Hanz finally got used to it - when I first started having to wear that mist cup on my trache, I think it scared him - he didn't know WHAT to make of the blue hose attatched to mommies neck! Doesn't bother him a bit anymore! Sometimes taking the main pain med (Oxycontin)isn't enough, so I follow it up w/a Neurontin! That used to make me SOOOO SLEEPY! I remember Dr. Yakes P.A. Rhonda would tell me that I just had to get past a certain point w/that medication, to where I wouldn't be so sleepy anymore! I kept thinking, "what does she mean by THAT"? So, I finally got to be more tolerant of that medication where I wasn't nodding off ... and if I'm still in pain several hours later (I take the Oxy every 7 hours) I may take a Lortab too! That will hold me over until it's time to take another Oxy! I may as well sign my paycheck over to the pharmacy, because there are several daily meds I need too! It's ok though, because I'm getting the help I need and I am really happy with my amazing husband and cutie patootie Hanzie!

Meeting other avm-ers has helped tremendously as well! Shalon Whitgob has been instrumental in getting fellow avm-ers to meet and help support one another! I got her name from one of Dr. Yakes P.A.'s @ the time and right away Shalon set me up w/my blog and both of us have reached many other avm-ers to help them through their procedures and situations! My blog is mainly for family and friends to keep up w/my latest procedures - and Shalon has lots of great medical information, as well as starting her own business w/her FGG's - Feel Good Gowns hospital wear! You can get to her site from mine!

Well, I'd better be off to bed soon! It's late and I still have to iron my clothes for tomorrow! I just wanted to remind all of you that even though I may not look so good right now, or I have people staring or some wonder what the heck happened to me - I like going back and filling in the gaps to some questions some may have. Feel free to ask any questions if you see me out and about. It would be nice if some people were a little more tactful, but what can you do. Would you believe a lady saw Shalon and I writing to each other on Facebook and this lady is in Israel? Her daughter has an avm, so this lady wrote and she and I have been keeping in touch ever since! I love writing and am here for anyone that has questions!

Thanks for listening and keeping up with my procedures and adventures! Take care! Love to all!

Cyndi