I am feeling so much better, now that my "permanent" teeth are in place!!! They are not perfect, but at last, I can eat sandwiches and pizza and non-mushy foods! Whether I will be able to get back to radio is a big question, but I am working a little at a "normal" job and I'm no longer considered disabled. My speech is coming along very well. Trying to maintain, and eventually improve, what I have. I have been posting videos on the Photos and Videos page here. Trying to update a latest one. YouTube is acting buggy today.
Thanks for your support... Have a happy and safe Memrial Day weekend!
The benefit in Clayton was a success. I think we raised about $650. Still waiting to hear the grand total for sure. Thanks to April for organizing the event, to the band Minus Mike for providing great entertainment, to new friends Joedy and Megan, and to EVERYBODY who came out to support me. I have a major procedure scheduled for later this afternoon. Nervous and excited all at once. Whatever happens, at least it is forward momentum. I thank you all for continued prayers. More updates to follow...
Complications. That's the word of the day. Please continue to pray for me.
The other day, I got to meet a bunch of really special people. Some of the big-hearted "kids" at the DPAO (Disabled Persons Action Organization) put on a bowl-a-thon for me at Seaway Lanes. Terri is the lady who contacted me about it and she told me more than once, "it's not gonna be a whole lot of money." But they raised (drum roll, please)... over $700 for me!!!!!!!!!!!!!! I am humbled, touched, and utterly blown away. Those wonderful folks treated me like I was a superstar when I showed up to meet them. Lots of smiles, handshakes and hugs all around! The "best-est" medicine of all = LOVE!!!!
Went to Dr. Panjali's yesterday. Great news... The wax "try-on" looked and fit great! So it has been sent back to the lab, and the permanent piece should arrive in 7-10 business days! Then it's just a matter of making another appointment and having the thing installed. Then I gotta get used to talking and eating with it. I will be posting a new video here, as well as updates on 2 more benefits! Thanks for following my story!
My next appointment is on Tuesday at 11AM. I will be getting a wax "try-on" to make sure everything is gonna fit. This is because my bite has changed since they took the first impressions, with bone shrinkage and all. They'll send this to the lab right away. I'm not sure if the piece that comes back will be the "immediate denture" (the name is sort of misfitting now) or the permanent "overdenture." Guess I'll find out Tuesday. Meanwhile, I'm in a lot of discomfort with my top teeth. Just a yucky, icky feeling. I can't explain it. Dry mouth all the time, with a bad taste. I think I can talk pretty good, but it's an effort.
I have another benefit coming up on May 10 at the Clayton Boathouse. My friend April is setting that one up. She got the band Minus Mike to play at it. I don't even know the details, LOL! I'll let you know when I know more. :)
I can't thank everyone enough who came out to support me on Sunday. Whether you volunteered your time, talent, donations or encouragement... or all of the above! I will be grateful to you until the day I die. I am not worthy. I can't believe so many people care about me. I feel so lucky to know you. You boosted my spirits. You give me a reason to hang on. Sometimes I gety so dejected and hopeless. I just of all of YOU and it pulls me through another disappointment, another setback, another minute of a long hard day. You helped me to raise almost $1,700!!!! Thank you, thank you, thank you.
I am continuing to heal. Please keep the prayers coming my way.
It was a day of disappointment and pain. I went into Sunshine Dental with high hopes of getting a prosthesis inserted. At long last, something to chew solid food with, and to talk clearly with.
It didn't happen.
I have had further bone loss in my jaw, which was expected. That happens after you get extractions. The left side, where I had grafts, has healed very well. Earlier, the doc had wanted to do an implant there, but there simply wasn't enought bone. No that there is, he gave me one today... instead of the prosthesis. Now when I say "implant," I don't mean a thing that looks like a real tooth, that is visible when you smile. It's a "mini-implant," which is basically just a screw. The screws in my mouth (must be five or six all together) will help secure the prosthesis, when I finally get it, which is now not gonna be for another two or three weeks. My mouth is currently sore from the drilling and implantation process. I have stitches again. No hot foods or rinsing my mouth out for a couple of days. I was so looking forward to getting back to work soon!
Thank God for my friend, Hope, who accompanied me to the appointment, and who bought me some ice cream and applesauce at Great American on the way home.
No internet 'til Thursday, because I just moved and Time Warner Cable effed up my order. So, I am typing this at the library.
I want to wake up and find out that this whole day has been a cruel April Fool's joke.
I am hoping that the TV appearance I did with my friend and event co-organizer, Robin, on Channel 7 News yesterday was seen by a lot of people. We've so much work into everything. I hope that in addition to raisding a lot of money, we also raise lots of AWARENESS about NF!
I am immensely disappointed. It seems there was a misunderstanding between Dr. Panjali and myself. Apparently it takes 6 weeks for the bone grafts (or any bone in one's body) to heal. So. No prostheses was inserted today. All he did was take out the remaining sutures that hadn't dissolved and the "membrane," which is like a barrier he inserted to keep the gums from growing where the new bone is supposed to grow. Still have nothing down there to chew with. I am SOOOOOO sick of ice cream, mashed potatoes, smoothies and oatmeal!!!!! Very bummed. I am now scheduled to get the temporary "teeth" in on April 1.
I was worried about the state of my upper teeth. There was a bad taste in my mouth, and I was afraid maybe they were infected. Fortunately, I got in to see the hygientist (Janelle) at Sunsine Dental, and she performed a "deep cleaning" and got rid of the bacteria that had been the source of the problem. I'll need this done every three months. The cost of everything was $254. They charge "per quadrent" so in this case, it pays not to have my bottom teeth. This is actually a discount price, through the Careington dental savings plan, which I believe costs about seven bucks a month. Well worth it. Janelle told me that when I get my prostheses on Monday, it might feel like I have "too much tongue," because the tongue actually expands when there are no bottom teeth in one's mouth. It does eventually shrink back to normal after awhile. She said it might not be too bad in my case, because I've only gone a few weeks, not years, minus the lower teeth. Meanwhile, she was very impressed with how nicely the gums have healed where I got the extractions. I am looking forward to Monday's milestone operation. I trust that Dr. Panjali will continue to do good work for me.
Well, I feel really blessed to have so many good friends. My benefit the other day was more like a family reunion, I saw so many friendly faces I have not seen in ages. It was a blast hearing everyone sing. I made about $350. The next one will be even better! Sunday's event really boosted my spirits. I thank everyone for their support so far!
I have been going stir crazy not working. It's hard not to be depressed, even with all the love surrounding me. Just hearing how the radio world goes on without me, with lottery ticket giveaways and such, gets me feeling really down. I can't listen. I hope to be back on the air March 18 or 19, if I can talk clearly following the procedure. I'm trying not to worry so much. It isn't easy. At least I am not in pain, other than the stirches feeling really annoying. I am heartened to see that our donations are almost up to $7,000... and I haven't even had my first benefit yet!
I had a good checkup with Dr. Penjali today. I had been worried. One side looked like it was healing better than the other. Shows you how much I know. But Dr. P said that while there is some inflammation, it is coming along nicely. Next appointment is March 17. He will remove the membrane that's now serving as a barrier between the tissue and the bone grafts. He'll put in "mini implants" and install (for lack of a better term) the prosthesis which will precede the permanent denture. Also, we atre developing a plan of attack to try and salvage those loose upper teeth. Please continue to pray for me! Thanks for your donations so far. I will have a new video up tonight, too!
Saw the doc for a followup yesterday. He was delighted with how well my mouth was healing after just 24 hours. He praised me for obviously listening to all the instructions and rules he gave me for post-op care. He marveled that I had hardly any swelling/ bruising, and theorized that this is because he grafted stem cells from my own body. He says My treatment plan might be reduced by a month or two, if I keep progressing at this rate!
I have to make ONE correction from yesterday. I wasn’t in surgery for six hours; it was more like eight! I went in at 8AM and got out of there around 4PM. I always did suck at math, LOL!
Doc says it’s safe for me to have hot foods and beverages now, but I’m holding off. I don’t need sutures bursting and bleeding over the weekend. Sticking to ice cream, Jell-O and smoothies (but not with a straw… another danger) for now. Not too nutritious, I know. I need to get hummus.
Got a WaterPic flosser, as recommended, for my top teeth. Am also rinsing after every “meal” (if you can call it that) with warm water w/ sea salt, as directed. Not in any great pain, just discomfort. Worried about those top teeth. Dr. P says “they’re not as bad,” but that doesn’t mean they’re good. They have wide spaces between them, which results in hissy “s” sounds when I speak, almost like a lisp. Not good if I am going to continue doing radio. I need to think and plan ahead. I want to be healthy and enjoy my future without worries… and then I can help others as well.
The surgery lasted about 6 hours. Afterextracting the bottom teeth, it took the doc an hour and a half just to scarpe all the infection out of the bone. He was able to put in three steel implants, I think, in preparation for the temporary prosthetic. Unfortuately, the left side had so little bone that he has to wait. Gary, my boyfriend, saw the CAT scans while I was recuperating and said that it looked like Dr. P had grafted "a good half inch" of bone in that section. Dr. P's technique also involved the use of lasers (to kill infection), surtures (to sew up holes in the tissue) and two layers of membrame (to act both as a barrier for foreign materials getting into the fresh wound and to help the new bone grow). Deep details, if you care to learn more about this complicated procedure) can be found here: http://www.oralhealthgroup.com/news/successful-bone-grafting/1000367055/?&er=NA
I have a mouth full of gauze (bleeding has decreased quite a bit) and stiches. I will not have bottom teeth for four to six weeks, as I cannot put pressure on the fresh bone grafts. I am not to talk for 72 hours. I must be on a liquid diet for 4-6 weeks. Ate a lot of ice cream last night. Ensure this morning. A bit woozy from the ordeal and the painkillers. Follow-up checkup this morning. Thanks to my friends Hope, Gary and April for their help yesterday!
Praying that my healing continues. And that the bone loss in my top teeth stops in its tracks, and that they never get infected like the bottom ones did.
Getting nervous, approaching the day of surgery. I have had a terrible case of dry mouth. It is very annoying, but I suppose it's good in a way, because the docs told me ahead of time that I am to drink, drink, drink tons of fluids post-op, in order to flush all the sedatives out of my system. Good lord, are they going to be giving me enough to knock out a small elephant? Scared. I want more than anything to be healthy and return the love that has been given to me without all these burdens on my mind and heart. I to thrive, to move forward and to get back to work....
The twentieth cannot get here soon enough. I am grateful, in the meantime, for my support system.
I was hoping that the Watertown Daily Times would have run in the Watertown Daily Times by now. I talked with Rebecca Madden, the reporter who did my story, and she said that the thing that's holding her up is that she has not been able to talk to Dr. Panjali. He is not returning her phone calls to provide addtitional comments on my case/ diagnosis/ prognosis, etc. She wants to add an expert angle to my story to give it more credibility. I gave her the names of other docs I've seen to follow up, but I'm getting discourgaed. I hope my story runs!!!!
I am going in at 8AM to get the most painful teeth pulled. That is the only way they can get rid of the infection.
The 7 News segment was awesome! Very effective. There are a lot of kind people in the world. I only wish my pain were not so great. I am in agony. I think I may get the extractions done earlier than the 20th, and just go without teeth. Anything would be preferrable to the pain I am in and this rotten feeling in my mouth. I am planning a couple of fundraisers. If I live that long.
I got a second opinion on my case. I won't even mention the oral surgeon's name. I will say that he was incredibly rude, abrasive and condescending. He thought that I need to find a specialist, called a "prosthodontist," in Syracuse. I've neither the means nor the mode of transportation to do so. Not only that, the doc wouldn't refer me to anyone specific. He said it was up to me to find someone. He and the other dentists who referred me there did not think I should go to Sunshine, because they only do "general dentistry." He was all too eager to tell me why the procedures outlined by Dr. P will not work. Got me into a total panic state. I was at the end of my rope, ready to give up. I felt so hopeless. I called Dr. P the next day with what felt like a hundred questions. He was very thorough and convincing in his explanation of everything, and he put my fears to rest. I rest my fate in his hands. This is no minor ordeal. It's a huge deal. It's my future. I think I've made the right choice. I will be doing a new video and posting it soon.
I'm in excruciating pain. I honestly don't know if I can make it to my surgery date. I alternately want to rip my teeth out, or put a shotgun to my head. Fortunately, I do not own a shotgun. I have wonderful friends and a fabulous, supportive boyfriend. If only I had money, insurance and all those good things.
Might be getting local media coverage... This might help things along! Fingers crossed!
As you may have noticed from the change in my main page, the cost of my operation has skyrocketed drastically from less than $5,000 to more than $25,000! I am feeling completely and utterly hopeless. I need your support! PLEASE!!!!
Going to have CAT scans done today. Thanks in advance to my friend April, who is coming out from Depauville to drive me/ accopmany me to my appointment. I will find out today if my procedure will involve a hospital stay. I probably will, as they'll have to do bone grafts. Dr. P wants to take bone from my hip, but I have osteoporosis, so I don't know if this will be possible. Can't they use synthetic bone??? I am really scared. I have no insurance, and the cost is going to be astronomical. The pain, I can handle. This isn't about aesthetics. Saving my radio career is important. Keeping a roof over my head is first and foremost. I don't want to go bankrupt. My mouth is a source of constant discompfort. I want relief. Prayers are appreciated.
I have spoken with Dr. Ward's office. Highly recommended. Problem is, they take 6 weeks to do extractions, with several (expensive) appointments in between. McCue was also a frontrunner, but after talking to them, I have eliminatede them as a contender. Ahlgrim was recommended by friends and two co-workers. Plus, he's right across the street from my workplace! Unfortunately, his office was closed when I got off work at 4PM. I went back to Aspen to talk w/ the manager of the Watertown office. His name is Mark. He told me cold, hard facts. I'll fill you in more at a later date. But the important thing is, he said: "I can tell you're very nervous. I recommend you get a second opinion." Practically ORDERED me to! And reassured me that if I decide to go with Aspen, that they'd be able to fit me in quickly. Sorry to all of you who've had bad experiences with Aspen, but the Watertown office so far earns high marks from me for honesty. As for cost... they all seem to equate about the same when you add up cost of dentures plus office visits, etc. A very difficult choice indeed.
Mouth is sore today. The roots of my bottom teeth hurt... So Super Sensitive! Hoping I can make it til next week. Brittany on the phone at Aspen was very reassuring. I called her TWICE today, having a panic attack! I'm so scared of being disfigured or unable to talk properly after this procedure... Good friends telling me not to worry, but dang, it's easier said than done! Thanks to my donors so far! Let's make this happen!!!!
I am having an issue with this WePay thing... If you use PayPal and wish to make a donation, please send payment through PayPal.com to firstname.lastname@example.org. I am not finding a way to integrate WePay to my bank account. So far $20 raised. Thanks! If anyone has used this WePay tool before, please let me know what I'm doing wrong.