Friday, February 27, 2009

Teeth pics and more

As I promised:


This is an awful picture of me (it's been a long day), but see how much more "beefed out" my lower lip is? I can smile with at least my top teeth showing now without my lower lip sinking in:


One of my hip scars, just to see how light they are now (someone asked me about this, it's been almost 2 years and they get lighter all the time). They follow the contour of my hip bone:


And this one, just for kicks...our cat sleeps on her back like a dog every night...this is her sleeping with me the other evening when I fell asleep watching TV after a long day:


Sunday, February 22, 2009

Post op tomorrow

I go in early to see the surgeons and prosthetics dr tomorrow. I am so glad because this is getting ridiculous! I cant barely eat and I cant even talk anymore it hurts so bad- the underside of my tongue is all raw and cut up on the left side. It looks like they either shaved the corner off the very back molar on the left side of the denture or it broke because there is a jagged piece just sticking out and that is what is doing all the cutting. So I am looking forward to having some relief from that- plus I am starving! I've already lost 5 pounds in less than a week (which isnt bad, I could stand to lose about 5 more but starving to do it is no fun!).

What has me a little worried is I am noticing whenever I eat or drink anything it gets caught up in the space under the teeth...there is a gap a few centimeters tall between the floor of my mouth and the denture and I am constantly having to clean it out and rinse with my peridex. It seems like no matter how careful I think I am, I find something trapped under there later! I am just so frightened of getting another infection under there, especially since I had one when I went in and for some reason my body doesnt show signs when I have one (fever, fatigue, pain and redness etc). I am going to end my antibiotic on Tuesday and I am going to ask for another week's worth tomorrow just to be sure...I cant help but have an ominous feeling about that infection I had, especially due to the fact that now there are teeth on top of it and I cant get a good look at it anymore and feel I cant clean it properly. So, I am going to talk to my surgeons tomorrow about that and see what they have to say.

I'll keep you all posted. Someone eat a big steak for me, please.

Day by day...

I often find myself in a constant state of unrest and worry when I think about what all is going on. Little things will trigger a crazy reaction of panic where I just cant think straight and start to get very anxious and nervous. Is my tumor coming back? Is that an infection? What is that new pain? What is that new bump?

Take last night for example. I had a wonderful night with Chris, we spent some time together reading some new books we had bought and cuddling on the couch (I know we sound so old already, dont we!) Well, when it was time to go to bed I was feeling fine, in a great mood actually since we hadnt spent any quality time together in about a week with my surgery and both of us just being too tired to do much beyond say hello at night when he got home from work.

So we go to bed, and I start to take the pillows off. I get down to my 2 pillows and notice...a big yellowish brown ring on one of my pillows. Seriously, it was like the size of my head. I immediately started to panic- obviously it came out of my mouth. I still have an infection, or else I have a new one from this last surgery. I started to cry and get upset. Chris of course tells me not to worry and just go to sleep and talk to the doctor on Monday when I go in, but I couldnt sleep very well at all.

I woke up this morning with an old hymn in my mind from church. I had gone to bed thinking of some old songs we used to sing in kids camp when I was growing up so I must have had hymns on my mind, because we don't really sing hymns at church much anymore, they've been replaced with choruses instead. Anyway, the song I had in my mind was this:

"Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear."

I am not sure what compelled me to do it, but all of a sudden I remembered a month ago when I had spilled a cup of coffee on one of our extra pillows and had to take the pillowcase off and wash it, but the pillow underneath still had a huge (that's right) yellowish brown ring left on it. I got up, took the pillowcase off the extra pillow, and took my second pillow and matched up the two stains. It was just an old coffee stain from a pillowcase I hadn't used in a long time. *Sigh.

I posted this for two reasons. One, so you can see the littlest things that can ruin my day and how sometimes I worry I will never be the same again after all of this I have gone through. But also for myself, because every day I am learning to trust a little more to God what is to become of me in the future with this ameloblastoma. I can't see now what is going to happen, but I just need to take it all in stride and just trust that he is going to give me the strength to deal with it all no matter what happens next and thats that. I need to take some of the burden off of my own shoulders and allow him to help me through this!

Saturday, February 21, 2009

Rare Disease Day February 28, 2009

"Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives." (quote from the website).

For more info go to:

Ouch and ick

I've been tasting a little blood in my mouth off and on since last night and was getting worried, as I havent tasted any blood at all since I got home from my surgery and new bleeding is never good...well, I finally figured out where its coming from. The teeth on the left side are very sharp for some reason and are cutting at my tongue every time I talk or try to eat something. I looked on the underside of my tongue and its filled with sores and they are now bleeding. Yuck! Also my throat is so incredibly doctor said I coughed quite a bit during surgery (I was coming down with a bit of a cold before I went in) and I had a tube in my throat for breathing so it must have scraped my throat raw in there because I cant eat anything that has any texture to it at all. Incredibly hot things/incredibly cold things also have been burning my throat, so I am getting more and more limited as to what I can eat until that heals up. Its exacerbated by the fact that my cold is getting even worse so I have been coughing a lot more every day and my throat is getting sorer from that.

Other than that I am just dandy.

Friday, February 20, 2009


Well, its been a pretty good couple of lips were pretty huge for the first 2 days but today they look SO much better. One side is still a little more swollen, but it just looks like I got hit in the mouth. The pain is mostly gone, just pretty sore still, so I do take the Vicodin to sleep better at night. The underside of my tongue is not liking the teeth down there and it keeps scraping on the edges when I talk so I have bumps all along the sides of my tongue that feel like when you bite your tongue over and over again in the same spot- pretty sore- so that makes it hard to talk normally. But that's about it. I still cant really chew, so am eating soft things like mashed potatoes, mac and cheese (swallowed directly- no chewing), strained chicken noodle soup, ice cream etc. I go back in on Monday to see the prosthetics doctor and my surgeons. They put me on an antibiotic every 6 hours for the infection I had and to prevent further infection and I am praying it works and am taking it religiously. Mostly it's just very very weird to feel teeth down there, and have them feel so secure and really in there. It's really hard to explain, as its something you just kinda take for granted since most people have them down there all the time! I am still getting used to sleeping with them in there (I used to take it out before bed) so that's a little uncomfortable but other than that I hope all is on the mend. *fingers crossed!*

On the home front things arent so son had pink eye last week right before my surgery, then I had surgery Tuesday and then Wednesday my daughter came down with pink eye as well and my son came down with a bad cold and cough. My husband only got the one day off of work (Wednesday) so on Thursday I had a sick Aron all by myself, good thing my parents took Ashley for me. It has not been easy, as my body just tells me it wants to sleep and rest but alas life just does not stop going just because I have had surgery so I just have to go on and do my daughter has her doctor appointnent which I have to take her to and it will be my first time driving since Monday, so I am a little anxious about it but hopefully it will be okay.

Here's a few pictures from this morning (excuse my face, I had literally just woke up):

Swelling going down:

The teeth:

Trying to smile my lopsided smile...the left side is still swollen inside pretty badly so my lip still sticks out:

Tuesday, February 17, 2009

out of surgery

I am in a surprising amount of pain, mostly due to the fact that the teeth are in there pressing on the swelling, my throat hurts terribly from the tube they stuck down it, and my lips are hugely swollen which is pulling them tight and they hurt pretty badly- but the surgery is done thank God. I did have an infection, which in my heart I just knew I did, but luckily it was localized and all in the little "sac" of fluid I had been noticing, and so I ended up losing one of the implants. However, my doctor put in 5 and said I can still have a stable base with 4 implants so they went ahead and did the teeth. I am on antibiotics now (and some vicodin- yippee! lol).

I found outsomething new today...they werent able to put the "regular" teeth in there...I guess those have a metal base on them for more permanency and stability but they werent able to put them on probably because of the infection and they just want to be sure all is well before attaching that final set. Soo that will be in another 6 months or so, after all of this is healed up nicely. They just converted the denture I have been wearing and attached it to the implants. I can still eat some foods that I wasnt able to eat before, yet nothing too hard yet. Kind of a bummer, as I assumed this was it. But, at least these teeth are in there and fixed nicely so I can eat again a little easier.

Here are a couple of pictures. Brace yourself, I know I look hideous...kinda like that lady that just gave birth to octuplets lol.


One Chris took of the cat sleeping with me, she has ben so loving, I think she knows I am in pain:


That's it for now, sitting up is making me feel nauseated. I'll keep you all posted.

Monday, February 16, 2009

Please no

when i changed my pillowcase this morning there was brown stuff on it that had come out of my mouth. Oh my gosh please dont let this be new infection. I have been so worried about that bubble forming in my mouth and feeling like it was possibly an infection but they told me not to be worried. Please dont let this be happening to me. I cant get a hold of anyone because its a holiday. I will just have to go in tomorrow and brace myself for the fact that my surgery probably isnt going to be happening. I dont want to lose that implant...I cant believe this, I am shaking all over. I just dont know what to do. Please dont let this be happening.

Friday, February 6, 2009

Surgery Feb 17th

So I just got a call that my next surgery is scheduled for Feb 17th...they are going to attach the teeth then. Finally- I have been waiting so long and was starting to get worried that I hadn't heard anything. I have been getting anxious because the skin in the floor of my mouth over the implant that lost its healing cap has been swelling up like a bubble, but getting a little bigger every day. When I wear my denture it flattens out again and then gets round again when I take it out. It's gross. I am worried and hope there is no infection or something underneath causing it to do that. I am so so tired of worrying and seems I can't have a moments peace with this darn thing. Every time I think I am done being worried I find something new to be anxious about. Now I am going to be worried until then that they are going to find that one of the implants is loose or something when I go in and they cant attach the teeth.

After this is done I want to take a break off surgeries for a bit. I will probably get another night job again a few days a week to help out with the finances a bit and just take some 'me' time off. I think my body is saying it needs a break. I know mentally I do. This is draining.