sara-pezzini Posted March 18, 2017 Author Share Posted March 18, 2017 Oh yeah forgot to say... the numbness in my cheek is gone but my tongue is still numb....it feels like i ate my soup too hot and burnt it....all the time....that can be okay again but can also stay this way.... Link to comment
Seraphim Posted March 18, 2017 Share Posted March 18, 2017 I am so so so glad you are healing well Sara!! I guess your mom is there to help you a lot? My greatest wish for you is that you are totally healed and it never comes back! Link to comment
sara-pezzini Posted March 18, 2017 Author Share Posted March 18, 2017 My parents were here for a little while every day this week, i have a freezer full of tubs of food, for 5 weeks! So when i get up i look in the freezer and decide what i want to eat that day and take it out, this is ideal! And on Monday every week my mom is here all day, we've done that for years now, and now on those days she'll cook fresh for me. I have a desk chair in my kitchen that i can lower and that way load and unload the dishwasher. And for this weekend i had planned not to see anyone, i desperately need some alone time after the 7 days in the hospital where they keep walking in every moment. But well R is an exception of course.... So him tonight and then a day of peace! I need that, i need alone time.... Thank you for your wish! I wish for you the exact same thing, that in a few years this will all be a distant memory for both of us!! How are you doing? Link to comment
Seraphim Posted March 18, 2017 Share Posted March 18, 2017 I am in pain weekly. And next Wed they put me out to take that shattered tooth out. It is right where my TN starts and he has to cut the gums open and drill and all kinds of stuff. Scary! But we all do what we can. They say this tooth coming out might be better for the TN. We will see. Link to comment
sara-pezzini Posted March 18, 2017 Author Share Posted March 18, 2017 Oh God that does sound scary!! Anytime they work on our Teath is scary now, they have to be so aware of the tn, but sounds like that are and you'll be in good hands! I'll think of you! Link to comment
Seraphim Posted March 18, 2017 Share Posted March 18, 2017 Oh God that does sound scary!! Anytime they work on our Teath is scary now, they have to be so aware of the tn, but sounds like that are and you'll be in good hands! I'll think of you! He is and sounds knowledgable about it . That's why he is going to put me out and cut through the gums to get it out that way. He said there's absolutely no way he would ever do a dental nerve block on me ever . And my own dentist now has stopped doing nerve blocks she will do local only . Doesn't matter anywhere in my mouth she will just do local and increase the local shots if she has to but no blocks. Link to comment
sara-pezzini Posted March 18, 2017 Author Share Posted March 18, 2017 Very good that he is so knowledgeable, it sounds promising.... I took a nap, i just fall asleep like that...body needs it apparently. Now a shower and some more rest before R gets here.... Link to comment
sara-pezzini Posted March 18, 2017 Author Share Posted March 18, 2017 Woohoo! Recently he gave me red roses, this time a huge bouquet of pink and white roses, so gorgeous! He is so sweet! I wore my scarf because the wig was impossible and it just felt natural with him, i wasn't self-conscious at all.... Now off to bed cause all that excitement had an effect on my head! Link to comment
Seraphim Posted March 21, 2017 Share Posted March 21, 2017 Awwww sounds so sweet. How are you doing Sara? Link to comment
RainyCoast Posted March 21, 2017 Share Posted March 21, 2017 this all sounds great sara. so happy for you!!! Link to comment
sara-pezzini Posted March 21, 2017 Author Share Posted March 21, 2017 His flowers are gorgeous! My mom was here yesterday and she was jealous hahaha Well i was able to stop with the pain meds for the wound! It does hurt a bit and i am absolutely unable to lay on that side of my head but okay... The stitches are starting to dissolve, except two tiny knots at either end and i cut those off myself.....i do feel some other parts of the thread but i hope that dissolves as well.... I get some headaches now and then and i am tired a lot. My mom was here all day yesterday as we have done for years and years, every Monday, but at the end of the day i was very tired, went to bed at 9 pm haha so company and having to talk is tiring.... But it's nowhere near as bad as i expected!! The meds, I'm weaning off them and so far the gabapentin which was 3600mg is now 2700mg and the tegretol was 1200mg and as of today will be 1000mg and then slowly every few days something comes off. No pain so far, with the exception of last Thursday.... I have an entire schedule of how to do it and i follow that but a bit slower because of the scare Thursday.... So it's going as well as can be expected!! Thank you guys so much for the support!! Truly means a lot! Link to comment
Seraphim Posted March 21, 2017 Share Posted March 21, 2017 Oh my goodness I am so excited at your progress!! This is a dream for you! Link to comment
RainyCoast Posted March 21, 2017 Share Posted March 21, 2017 i love seeing this. you've waited and ached for so long. you are right yo wean off the meds slowly. you will be freeeee.in no time!!!! Link to comment
RainyCoast Posted March 21, 2017 Share Posted March 21, 2017 so glad your parents are helpful too. sara, didn't you name the tumor? isn't it interesting how when *name* could no longer cause you pain this thoughtful new guy showed up? rest well. Link to comment
sara-pezzini Posted March 21, 2017 Author Share Posted March 21, 2017 Lol rainy, yes i named it after my ex hahaha and it is shrinking now lol but my ex was already out of my head looooong before that, i ended things with him so i wasn't hurting either but he did give me so much stress!!! Phew! I already knew R and in fact have complained to him about ex hahaha We work at the same company but he works in the office and i clean there so it's very easy to either see him or avoid him if it ever comes to that. After ex i never ever wanted another man, i was very adamant about that. But then i get this tumour and my boss announced it at work so that people knew what i was dealing with and from that moment on he was there for me, and he never lost that interest or care, it's been 2 years now since i found out and he's still here and he knows everything, i can share every detail with him and yeah slowly i began to feel more for him and i think and so does everyone around me and him, that he feels the same but we're both scared and hurt by our exes. He has told someone at work that he needs time.....i give it to him..... lol He makes me feel very good in spite of everything...... Oh yeah in the hospital they came to weigh me......shock horror! In 2 years time with these meds i gained 35 pounds! Sheesh! That was shocking! So i can't wait to be off them! Link to comment
RainyCoast Posted March 21, 2017 Share Posted March 21, 2017 that's so good, that you both respected each others' need for time and space before giving it a go. if more people did that it would save a lot of trouble. your boss announced it? not sure how i would feel about that but hopefully everyone was as sympathetic as him. how is the pain? getting used to not lowering your head and the new sleeping position? i wonder what it's going to feel like when all this heals, to suddenly feel good again. sometimes when a longterm problem is lifted i suddenly realize what i was up against. then i finally get some compassion for myself and forgive myself for coping badly and stop getting irritated with myself when i can't do something. it leaves me feeling more..centered and whole...to see that burden GONE. so glad it's shrinking. and that you are comfortable with R about the wound and the scarf and all. you're not keeping bits of yourself out of connection. that's so heartwarming. Link to comment
sara-pezzini Posted March 21, 2017 Author Share Posted March 21, 2017 I work in a small company where we are very friendly and sympathetic with each other. It's hard to explain but it is almost family, so many co-workers have come to visit me since I've been ill. So i didn't mind him telling them, it was a huge shock throughout the entire company and everyone has been very supportive and i can tell my story over and over which has also been super helpful, also with my shyness haha It was a huge deal to first tell R about my hair and then later see him with my scarf on, 2 years ago i wouldn't have been able to do that.... And he was very sweet about it obviously.... The scar is painful, i removed most of the stitching thread so that hurts now but hopefully that will make it better now. The thread was stuck.... In the afternoon i took off the first 200mg of the tegretol which is very scary!! Tegretol has been my safety blanket for 2 years...... Not bending down is hard but i have to! And yes it will be very weird to be painfree! That will be such a weird feeling! Link to comment
sara-pezzini Posted March 22, 2017 Author Share Posted March 22, 2017 Oh this is so weird! An old friend contacted me through Facebook messenger..... we got into a huge fight and there were little things that had annoyed me for years and suddenly it all came out, well not suddenly but..... that was 4 years ago and i had told her i never wanted to have contact anymore cause she had hurt me and needed to appologize first.... But yeah time passed and i found myself mellowing and actually thinking about her every once in a while, especially now in this hard time, she was my best friend for 10 years, she was very self involved at the time but time has passed now....i forgot a lot of the things that hurt me Well i forgot a lot period hahaha But her message touched me...... so i messaged her back and we'll see what happens.... Haven't been in touch in over 4 years so a lot happened.... This excited me today........ Link to comment
Seraphim Posted March 25, 2017 Share Posted March 25, 2017 I hope you both become friends again. Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 As of yesterday i am down exactly a third of my meds! From 3600 to 2400 and from 1200 to 800 and no pain! Other than that i feel good, have to really think about not bending down and take it easy.... Last night for the first time i was able to sleep on that side for an hour! That piece of healing skull hurts but it's getting better! And the scar is beautiful and doesn't hurt anymore... I'm doing well! Finally some good news! Link to comment
Seraphim Posted March 28, 2017 Share Posted March 28, 2017 As of yesterday i am down exactly a third of my meds! From 3600 to 2400 and from 1200 to 800 and no pain! Other than that i feel good, have to really think about not bending down and take it easy.... Last night for the first time i was able to sleep on that side for an hour! That piece of healing skull hurts but it's getting better! And the scar is beautiful and doesn't hurt anymore... I'm doing well! Finally some good news! I am so excited for you Sara!! That is so freaking awesome !!!! Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 Thank you! Yes I'm so excited as well, finally finally! Should i ever need this surgery again then i would in a heartbeat..... but let's hope this one sticks! I'm getting myself back again once all the meds are gone. Can't wait!! Link to comment
Seraphim Posted March 28, 2017 Share Posted March 28, 2017 Thank you! Yes I'm so excited as well, finally finally! Should i ever need this surgery again then i would in a heartbeat..... but let's hope this one sticks! I'm getting myself back again once all the meds are gone. Can't wait!! Someday I hope they will offer it to me . 🙏🏻 Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 I asked for it myself! Don't think they'll offer it anytime soon since it has risks and with this disease they pretty much leave it all up to you... But it depends on which form of TN you have, thou need the one with the electric shocks, typical TN.... For the other form of TN it won't work and can even make it worse. First have them do an mri and see if they can spot m see a vessel issuing against the nerve. If that's the case then this surgery and the anaesthesia is worth it!! Link to comment
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