Thursday, June 28

My lawyer has advised me to stop doing blogs. I'm so sorry, I thought it was a great idea. BTW, i started swallowing on Sunday!

June 26, 2007

Sorry I haven't caught up for a few days, our internet was down.

It seems that the esophogeal dialation along with the e stim has been a success! I ate my first meal last night for dinner. Let me take you back a few days.

If you remember, Friday was a tough day. I only swallowed about 25 percent of the time. It was soooooo frustrating and they were talking about maybe having to do the dialation again.

Well, Sunday I was feeling confident and was going to chew and spit a piece of cantalope. A little piece was left after spitting so I decided to swallow, and it went. I decided to try a pudding pak and swallowed the whole thing without choking once!

Yesterday at swallow therapy, I asked Martha (my therapist) not to get mad and told her that story. She was ecstatic! So, during therapy, I tried ice cream, cheetos, and fritos, all with no problems.

So, last night, I decided to try a whole meal. Not my ideal first meal, but I've got to take it slow. I got down about half a cheese burger without the bun, fried cabbage (I LOVE cabbage), and a bunch of mashed potatoe!

This morning, I had scrambled eggs with minimal problems. My issues right now are swallowing liquids, but that too will come.

I want to thank the badastronomer for his fundraising, he's brought in themost so far! Great job, Phil, and thank you sooooooo much!

The benefit is this saturday and we are getting scared that it may not be big enough. Don't let that keep you from coming, though, we are raffling and auctioning some GREAT stuff. Some local businesses have been great about donating,and some individuals as well, I'm so excited and am pretty sure I wil be able to stick it out the whole time as long as it doesn't get too crazy! Can't wait to meet some of the people who have been thinking about me and working so hard for me.

Friday, June 22

Today I had my third e stim session with my speech therapist, Martha.

I swallowed today about 60 percent of the time which is much better than yesterday which was only about a quarter of the time. I'm still not allowed food, so saliva and ice chips are it. It may take longer than two weeks of e stim, and I may have to be dialated again, but I'm sticking it out.

I want to thank so many people for being so great and donating stuff for the fundraiser on the 30th. I even heard a rumor that there may be WWE wrestlers coming? So many people have worked so hard on this there is no way I could ever thank them!

I have a great, cute story I'd like to share: My friend Liz' daughter, Emma, is one of my biggest "fans" and a great little friend. Yesterday Liz explained to her about the fundraiser and what it was all about, so she went through all her toys and sat outside with box of toys and a sign selling them for $2 to raise money for me. She refused to come inside and was out in the dark trying to raise money to help me...what a doll! I love that little squirt! I hope to see many of you at the benefit next weekend!

Wednesday June 20

Just in case any of you missed the five o'clock news, I had my swallow procedure today and it seems to have worked.

For those of you who did see it, unfortunately I did NOT get to go to Cold Stone on the way home, I am limited to swallowing ice chips and saliva for now. But, that will change.

I want to thank PSL and the entire staff there for taking such good care of me....Angie, Tricia (she held my hand while they stuck tubes down my throat), Martha, Gloria and Sharon, and of course Dr. Mallory for doing the procedure.

Thanks also to channel 7 for being there for me again!

I will be at speech therapy for the next two weeks to retrain my muscles to swallow properly.

I also want to thank some old friends of mine, Bad Penny, who are playing their last show at the Bluebird tomorrow night. They are donating the proceeds of ticket and merch sales to my benefit. Check them out if you aren't busy, they rock and have something for just about everyone!

Tuesday, June 19

I met with a new neuro doc today and I love her. Sounds like she will be good for me. She's putting me on a new pain med for nerve pain, so we'll see if it works.

My swallow procedure starts tomorrow, and I'm so excited. I know my grandma will be there cheering me on and making sure it all goes ok! I'm scared for sure, to say the least. Not scared so much of the procedure, though having tubes repeatedly stuck down my throat doesn't really make me too happy, I'm more scared it won't work. I'm trying to remain positive, but it's so hard to be positive all the time. And it's been sooooo long since I've swallowed....Think good thoughts! Wish me luck!

Thursday, June 14

I'm so proud of myself today. I woke up feeling like crap, but did all my morning prep without taking a break. Usually it's: brush my teeth, sit down, get dressed, sit down, take meds, sit down, get some protein shake, sit down...you get the picture.

Today I pushed myself to just do it wihout taking breaks and I made it. Maybe my recovery isn't as stagnant as I thought. It's just the swallowing and eye things that make me feel that way.

BUT! I may be in for my swallow therapy next week! Keep your fingers crossed!

Wednesday, June 13

I finally am back in physical therapy! I can already tell a difference and I love my new PT, Chris. She's wonderful and I can tell she will be implemental in my recovery.

We are having a fundraiser at Sam Taylor's BBQ on June 30 from 2-7, no admission fee. CC Collier is donating his time and providing entertainment.

I just want to thank all the people who have found it in their hearts to make donations, as well. You will never know how much your generousity is helping me.

I got my report from my opthamologist visit, and I have to see someone in a specialty I've never heard of to see what really needs to be done for my eyes. I think in my heart I just believe that I will wake up one day and they will be normal again.

Same with my swallow. Still waiting to hear on that.

I want to thank all the people who have kept me in their thoughts through this time.

Tuesday, June 12

It's a frustrating day, as a result of yesterday actually. It's so hard for me to go out in public, people stare like I'm some big freak, and it makes me so sad.

I felt so good after acupuncture, though it hurts because my scar tissue is so thick, but then we went to WalMart. People look at me like I'm a freak. My upper body is very stiff, so I walk like Frankenstein.

Because of my eyes, I have to turn my head slightly to see what's in front of me, and then to top it off my eyes are severely visibly messed up. It hurts to be stared at like a freak, I've never done that to others and never would. It makes me sad.

I'm still waiting to hear from my GI Dr. about my swallowing procedure, so I'm anxious about that. He's waiting for approval from my neuro and spine docs, and that's frustrating because I know that I could have started as early as Thursday without those approvals. But, everyone has to be on the same page, I understand. Hopefully I can start next week.

Pres. St. Luke's hospital is being awesome about helping and providing a lot of care for my swallowing recovery.

I'm finally getting back into physical therapy after about a month and a half of none, and they got me in as early as today! That should lighten up my day!

I need it, my muscles are sooooo tight and I am so weak, it's hard for me to roll up a car window. Can you imagine?

Monday, June 11

I had a rough weekend. I was really sick yesterday and I miss my cheerleading phone calls from my grandma...I miss her terribly, as she really was my biggest cheerleader.

I'm really sore today so am glad I've got acupuncture today, as it always helps sooooo much.

For anyone interested, we are planning a fundraiser for June 30. Stay posted for details.

Friday, June 8

So I saw a GI, Dr. Mallory today, and I remain indifferent as to whether or not I will swallow again.

There are so many things going on inside me: nerve damage, muscle deterioration, etc, that who knows the real reason I can't swallow.

We do know that the opening to my esophogus might as well be glued shut, so this is what they are going to do: They are going to use tapered tubes and stick them down my throat (yes, I have to be conscious), starting with a small one and then getting bigger and bigger.

Then the plan is to go straight to a speech therapist so they can use electric stim on my neck to keep the muscles "awake." sound like fun? But, with other drs oking the procedure, I may be able to start as early as next week!

I miss food more and more every day, and when I'm thirsty I don't get immediate satisfaction, I have to shoot water in my peg tube and wait for it to hydrate my body.

On a lighter note, my spine dr, Dr. Ghiselli, forwarded me a letter his office received from a twelve year old girl with similar injuries. Her accident was the first of January so her halo has come off. There are some similarities in our conditions, so it's nice to hear from her. My heart goes out to her as I know what she and her family are going through.

Reading her letter was an inspiration, to know somoeone so small and young could go through similar things.

Thursday, June 7

So, we are back from NE and things seem to be getting back to kind of "normal," (for us anyway).

I have a consultation tomorrow to see if the recomended swallow therapy will work or is worth a try at least (that's all they'll really tell us, no one knows if it'll work or not).

So what they want to do is stick a tube into my esophogus and dilate it, and then I will go straight to swallowing therapy and for one to two weeks will have electric stimulation on my throat (yes, it HURTS!).

Hopefully it works, who knows, maybe I can hit a bbq for july 4?

May 30

My grandma passed away this morning, so this will be my last blog for a few days as I am going back to NE for the services. This is a sad day for me, she was such a rock for me through my recovery. I don't know what I will do without her.

May 29

It's been a rough weekend. Yesterday we found out my only living grandparent, my maternal grandma, was life flighted to a hospital in Omaha because of her heart. She ended up having a triple bi-pass yesterday and I am stuck here 600 miles away. She's still critical and it's all touch and go and we don't know if she's going to make it.

I'm not in any condition to travel so I sit here anxious and scared to death that something will go wrong. They say for now she is holding her own, but she is critical. For all the people sending me prayers and well wishes, please extend them to my grandma as well.

It's been a fight with the healthcare system that no one should have to fight. I am hoping to be able to step up and do something about our system that doesn't work so people don't have to continue going through the red tape I have encountered.

I have been lucky enough to get the bare essentials of what I need, and am happy to finally be getting back to physical therapy next week.

Thank you again to all the people who are thinking of me and sending me well wishes.

May 25

Today is a strange day... I had an upsetting dream last night because I thought it was real when I woke up. I dreamt that I could swallow and that I was eating everything I love -- lobster, chocolate, fondue, steak, gummy bears, you name it! Then I woke up and realized it was just a dream.

However, I did find out today that I may be starting therapy to help recover my swallow as early as next week! How exciting.

Today I'm doing an interview with AP television because they have so much interest overseas...who would have thought?

I still wonder every day where I get the strength to keep pushing forward, there must be a lot of people pulling for me somewhere because I never would have thought I could make it through these days.

Speaking of eating, my feeding pump is beeping at me to come back and "eat," so have a great day!

May 24

It blows my mind the compassion and generousity of complete strangers that have been touched by my story and keep me in their thoughts.

There have been a few blogs I've found to be negative, but I just laugh and wonder why they are wasting their time on such trivialities when I am in need of so much care and assistance, when I am already in so much pain, both physically and emotionally. What is the harm in making fun of me or my condition, or my need for help?

I'll tell you....I'm a real person with real problems that are effecting every aspect of my life. But again, I just have to laugh that people can be so ignorant, cruel or disregarding of others.

What really affects me is all the positive energy people have put out there for me, and I am so grateful. There is even a fundraser being planned for me in June.

I really want to thank Jane Slater for all she has done in getting my story out there and continuing to work so hard on helping me. Without her I wouldn't be as far along as I am, as she has done so much to screen and promote my needs and my story.

Laying in the hospital for five weeks, at no time ever did I think that I would be such a big story. I don't even care about any of that, really, I just want to swallow again and see straight. Thanks to everyone for your continued support!

May 23

I ended up in the ER again last night as my infection seemed to have gotten worse. We were there for four hours and they did nothing to help. The healthcare system is so frustrating, and I daily spend time thinking about how unfair it is.

I try to remain positive through it all, but I know there are procedures that will help me with swallowing and seeing straight and they are just out of reach. It starts to wear on me no matter how hard I try to keep my spirits up. But, I just have to have hope that someday soon I will get what I need.

There is a benefit being planned for me in June, so I will keep you updated.

Thanks for reading!

May 22

I'm still trying to get used to the phone calls and seeing my name and face so many places.

I heard that last night I was on the Colbert Report? Sorry I missed that, I love that show!

Things are up and down on a constant basis. Sunday I went to the ER because of an infection in my GI (feeding) tube where I received IV antibiotics AND two scripts for antibiotics to help cure the infection.

Finally, I also had a stitch replaced so I don't have to keep taping in.

However, today the infection seems worse and I may have to go to the ER again tonight. It is so frustrating that I have all these big things going on with my health and then I get an infection that gets worse with antibiotics. ugh!

The most frustrating about the infection is that I was offered a spot on Miami Ink (they'll even cover expenses) next week and won't be able to go because of my condition...We even found the greatest tattoo that will say "lucky lady" and is beautiful. I'm heartbroken as I am a tattoo collector and a fan of the show -- and my favorite artist would be doing it.

I spent the day being evaluated psychologically (that's a scary thought, LOL) and am hoping to get into counseling soon.

I want to send my deepest and most sincere thanks to the people who have taken an interest in me and my recovery, and the people who have donated to my fund. You will never know how much of an impact your empathy has had on me.