Well, It's been a little over a week that I've been back from Denver and doing well. Doesn't mean I'm happy, but @ least I'm not bleeding! For those of you maybe not too familiar w/my situation (Hi Lindsey!), for a while I would have severe bleeds from inside my mouth. This is spontaneous and has happened so severely @ work that I've had to be transported by ambulance to the hospital. I'm really trying to make a conscious effort to feel better about my whole situation.
Even though I got the "all done until a check up in 6 months" from Dr. Yakes, I can't even enjoy that since I've had a few bleeds since leaving Denver. So am I REALLY done, is the bleeding just a "hic-cup"? Let me just say that I love my life. Everything about my life is awesome, except for the avm. I am very blessed to have a family that loves and support me,
(here are my nephews Mark and Davis)
Here is one of my favorite photos of Mark and Hanz!
This next one was taken the day we got Bella! Probably the only time she was smaller than Hanz! They are Brussels Griffons, like Verdell in the movie As Good As It Gets with Jack Nicholson and Helen Hunt!
I love comedy (Big Bang Theory),
music (Taylor Swift - LOVE her! Since I can't hear well right now, I enjoy blasting her cd's in the car - all her songs are so cool! Did you know her song Back to December from her Speak Now cd is supposed to be about what happened between her and Taylor Lautner from Twilight? I loved seeing the two of them together in the movie Valentines Day!
The Band Perry - Neal, Kim and Reid)
and I enjoy several hobbies: cross stitching, rubberstamping, calligraphy, reading, blogging). I've always loved to write, so this gives me an opportunity to do that and to vent and share!
Did you know that I have an Aunt that is about to celebrate her Jubilee in a few weeks with the Sisters of St. Mary in Oregon? We grew up close to Sister Juanita, she is one of my moms younger sisters - she was my inspiration for learning calligraphy! Sister J. did all our wedding rehearsal dinner menu's in calligraphy @ Edelweiss!! Here she is and I'm including a photo of her bestie Sister Adele! I really am blessed to have such an awesome family!
As some of you fellow avm-ers know, having embolizations results in swelling and steroids are needed to reduce swelling. I used to love steroids - it meant energy and feeling better! Unfortunately being on steroids for any length of time also means a huge increase in appetite, can't wind down enough to get a good nights rest, skin drying to cracking/splitting and losing bone density. My potassium is always low lately, so I take extra potassium - if I take the liquid form, it tastes like eating a cube of salt (even w/the mango flavoring from the pharmacy) and the pill form is huge and chalky! Ugh! I also take extra iron since I have/had frequent bleeds and calcium to help my bones and hair! Everything on the left side of my face is messed up due to the avm.
I recently came across this photo - this was when Dr. Yakes aggressively went after a huge artery I had - ugh! This took several years to heal! Mark would do my wound care between sessions when I would go in to have it cleaned - and had to have it covered to keep germs out. It was hot and uncomfortable.
My family always tells me how "brave" I am - what does that really mean? I feel like I don't have a choice but to go out into the world and live my life. What's the alternative - cowering in the corner and shutting down? I'm sooo tired of people staring @ me when I'm @ the grocery store, or I go out to grab a bite to eat. Wish they could be a little more subtle about it. People need to explain to their children that we all don't always look well due to complications. Please educate kids!
Avm's don't go away either - having one means seeing it through until a doctor can get rid of it. If you can find a doctor that is willing to take you on as a patient - believe me, there's been a couple of doctors not wanting to touch this and can't blame them either! I feel it is a curse. It isn't something that can be dealt with easily - it's an ongoing process that can take years of treatments.
This has been extremely difficult on my marriage - how could it not be? Mark and I will be married 22 years in December. Here are some old photos I ran across. I wish I could wear makeup - someone asked recently if I could wear foundation. No - my skin is soooo sensitive right now - even if I could apply it, removing it might cause irritation or bleeding. I have lots of little blood vessels all over right now that hopefully will be taken care of later. The only thing I might be able to do is wear some eyebrow pencil and some eye shadow and mascara. For a long time I was very weak from losing so much blood, that I didn't feel well enough to even think about trying to improve my appearance.
Marriage is difficult enough on it's own, without throwing something like an avm into the mix! If I'm going through hell, my husband Mark is right there with me. He's had to clean up the bloody mess I make when I have a bleed, as I'm certainly not feeling well enough, or can't bend over to get it done myself! He's handing me gauze to pack my mouth with as I lean over the sink trying not to get blood everywhere!
I've been hacking lately due to allergies, so I asked Mark to replace my trache. I'm so lucky he does these things for me - I know men that won't even carry their wives purse to help them, much less clean and change out their trache! My friend and neighbor Terry is a respiratory tech, so she has always been available to us for any help we need in that area! Back to Mark being my caregiver ....
Of course there's times we lose our patience and lash out - no one could blame Mark. It isn't just a matter of my saying, "Oh, I don't feel well, but I'm going to be as nice as I can anyway." When you're gushing blood clots or in pain (or both), all you can think of is stopping it in any way possible. I don't like to wander too far away from home, as of course that is where I can be most comfortable. I'm doing good to get to work and back. I pull a hobby cart full of anything that will make my life easier every day to work! I have meds, snacks, books, magazines, cd's - anything that will help get me through the day!
Yesterday after work, I had asked Mark if we could take our kids to Petco and Petsmart, as they hadn't really had much of an outing lately. It was really too soon for me to go on an outing after my last treatment. It's been so hot out, that we don't like going out in the yard to walk Hanz and Bella on the leash - and this way, we all get out of the house for a little fun and stay cool too! I don't know why I even bother w/Petco (diversity), as their employees are never friendly or helpful. I've even spoken to the manager when I'm seeking a particular item, and he's just as bad. Anyway, by the time we left Petco and then went to Petsmart - (where we were cheerfully greeted by employees), I was already planning what I could eat the minute I got home! Yesterday was my last day on steroids and I knew I had to have food right away when I got home! Soon as we walked in the door, Mark started making me a baked potato (loaded) while I had a peanut butter jelly sandwich and then I had a big bowl of Basmani rice! I have to eat soft foods due to losing some crowns and some of my teeth are damaged from the bleeds and have cracked! I am limited to how wide I can open my mouth w/all the avm things going on, so it's been difficult to eat, brush and function normally.
Thought you might find this interesting. The following is a description of "phase one" of the proposed treatment plan that Dr. Robinson (Cosmetic Surgeon) wants to start my reconstruction with: Keep in mind I hope to be able to hear again on the left side and need an earlobe reconstructed, amongst other things.
Surgical removal of erupted tooth (Tooth #1,#2,#3,#18,#19,#20,#21,#22)
Surgical removal of erupted tooth (Tooth #12,#13,#14) possible.
Blepharoplasty, lower eyelid
Adjacent tissue transfer or rearrangement, forehead, cheeks, chin, mouth, neck;defect 10.130 sq cm
Repair lip, full thickness; over one-half vertical height or complex.
Established patient-history, examination, counseling and ordering lab or diagnostic procedures.
Since the left side of my face has been so damaged with embolizations, Dr. Robinson said he may be able to use some of the skin under my chin in that area.
In speaking to my brother-in-law Greg, DDS., he's told me how some patients have all their teeth removed @ once! I can't even begin to imagine. It's bad enough I have to have any removed, not to mention what is going through my head is - will the blood start gushing upon removal? It shouldn't, as I'm supposed to "be done" with the avm, but this thing has a mind of it's own. How can I not be concerned or anxious? I'll be living on mashed potatoes and liquids for a while until my gums heal and I can have "temporary teeth" until possible titanium implants later? Right now I drool due to my split lip - can't wait to get that fixed. Hard to use a spoon and must use a straw to drink from a glass. I can drink bottled water from small opening. All these things are going through my mind and I'm having to deal with figuring out what I can eat, am I drooling, bleeding, hacking, etc. - so my primary concern isn't always being the best patient possible. Poor Mark works all day (out in the hot sun a lot) then comes home to help take care of me and cook and keep our home running! He feeds, bathes and cleans up after our furry kids Hanz and Bella. They are essential to my recovery - they make me so happy and help me forget what I'm going through, at least for a bit. They are both have a good disposition (esp. Hanz) and we adore them! Bella is a live wire and we can't help but laugh @ her antics! My job is to snuggle and love them! Here are my kids, making sure mommy knows they love her!
My sister and her husband Greg have been instrumental in helping us get through this terrible ordeal. They help monetarily of course, but they supply us with lots of love, prayer and time! For the most part, I'm a happy person, but going through all of this crushes my spirit @ times, and I sometimes wonder how I'll ever get through it. I do realize there are avm patients that may not be as lucky as I am or are going through this on their own - but believe me, this is the toughest thing I've ever been through. I'm grateful that I don't have children to worry about - can you imagine having to go through this and have to be trying to find someone to take care of my kids when I'm in CO! We have awesome neighbors that take care of Hanz and Bella when Mark accompanies me to CO - breaks my heart to leave my babies!
In my mind, how I feel and how I look are two different things. When I feel well enough and I'm enjoying music - I'm not thinking about how I have facial paralysis - how I can't sing along (hard to understand what I'm saying with my split lip and bulk from avm that hopefully will be debulked soon) - not to mention I have hearing loss on my left side. All I can hear on the left side is my pulse.
I am grateful not to have had any bleeds for almost 5 days. Mark has a pulled pork going in the crockpot that smells wonderful! I believe there is some acorn squash and fries to go with it!!! I'm doing some laundry and need to go check on the furry kids to make sure they're not into any trouble! I went to Mom's earlier and Mark texted me that he found Hanz and Bella with some bread on their bed. One of my step-sisters had a dog that ate a loaf of bread and died, so of course I was horrified to know Mark had found bread on the floor the kids had gotten into! Luckily, I don't think they ate any of it before he found them! Whew!
I may tweak this here and there, but I've been wanting to write some more about how I'm feeling and what I'm going through right now.