Saturday, October 25, 2014

And here we are again..

Wow I can't believe it's been 4 years since I've been back on here. I have been lucky enough to have 4 years without jaw pain, eating what I want and enjoying a pain free life. I thought I was in the clear and would never have to go back to the HELL I was in 4 years ago. But here I am again back in that hell :(

 A little catch up...I had TMJ my whole life, had 4 wisdom teeth removed in 2009 and the "POS" dentist must have wiggled my TMJ so much the disc pushed out. I went through the hardest year of my entire life with 24/7 excruciating jaw pain, all over muscle pain from Arthritis, losing 25 pounds on a soft food diet and pretty much losing myself. Had 3 surgeries that only made me worse and I just gave up. I was on so much medication I was angry, so emotional and just a mess the whole year. One night all 115 pounds of me went out dancing, fell down HARD and hit my face, broke my collar bone and bruised my entire left side of my body. That fall pushed my jaw disc back in and it has stayed in for 4 years. Two months ago I was eating wheat pasta and chicken and heard POP::(((( And shit, I knew I was immediately back in hell. 

So here we are again back on soft foods, back with all day and night chronic pain, back to medication and heating pads and wearing a mouthguard all day and night. The emotions are back the feeling crazy are back...it's all back and I am so angry!!! Went back to the surgeon at BMC and heard the words if never thought I'd hear.."your jaw won't ever be permanently fixed"?!?!!? And just like that my whole life was changed... 

I have the option of trying injections and the surgeon will see if he can get the disc back in. If he can't I have to consider major jaw surgery. But all of these surgeries will only be able to give me 2 to 4 years relief IF they work. I'm on a soft food diet for life and I now have Degenerative Arthritis in my jaw joint. This is the hardest thing to explain to friends and family. It's frustrating actually. No one understands  until they've gone through it. They think oh it's just a tooth ache or just another thing Mandis going through or Mandi is crazy. Non of which are true so how do I explain this? I'll try now...

I wake up in the morning and my jaw feels like stabbing pains. It's unbearable pain! I have a headache all day long. My neck and back kill and every morning I feel like total crap. But I have to get up and get through the day. I take my meds, make myself eat something soft and put myself together. Mouthguard is in all day and I hardly speak to anyone much...because talking more then 15 minutes or laughing sets the pain off. Yawning, sneezing, eating too much, stress, bending forward or backward, resting my head back or putting my face on a pillow trigger the pain. All normal ways we live life. Oh and eating soft foods is horrible! I have zero social life and hardly leave the house. Thank God I work from home and have the most amazing kids!! Watching them all day makes me so happy and keeps me busy! So this is the best way to explain it and it's just a pure hell and there's no cure...which scares the shit out of me!! How am I suppose to live this way? What kind of a life is this? They say it could be worse but honestly it couldn't. This is a horrible horrible way to live and it's very unfair! I've been through a lot in my life and I'm sure people are sick of hearing it but I didn't choose any of this! I'm so lucky I have an amazing family and boyfriend and some friends to get me through this and support me! But I've had some people turn their backs on me and it hurts very much! No matter what, you should ALWAYS be there for your friends!! Especially when they reach out!! I'm not the greatest friend, I miss things, I hate talking on the phone, I don't enjoy going out much, I'm difficult but friendships work both ways! It takes two not one! And I would never turn my back on anyone going through anything, never!! So unfortunately going through this you learn who's your true friend and who's not. And it's sad because friends are what get you through hard times. But I have to focus on myself and my health and figure out what the heck to do!? I just want to explain to people what I'm going through. It's a very isolating lonely life living with a jaw disease. I'm sad thinking about the Holidays and Aruba and next year and so forth, not knowing what the future will hold and if I'll be in pain?! 

 I'm a very outgoing, funny, fun, crazy little dancing drinking gal, so this is very hard losing all that right now. I don't know how I'm going to get through this but I will!!

I'll never stop researching and talking to others struggling with this disease. I'll never give up!! If anyone knows anyone going through this or TMJD or even Chronic Pain send them my way :) Having someone else who understands makes this a little easier! Im praying, I'm trying to stay positive, I'm pushing myself daily and I'm fighting!! 
The love and support means the world to me! And I hope people have a better understanding of what I'm going through. I'm embarrassed to talk with my mouthguard and I feel funny holding my jaw while talking to people. My face is always blue from my joint cream. Most days I look like a hot mess. But writing this makes me feel better and hopefully explains this better :) 

I don't know why all this bad keeps happening but I'm strong enough to handle it!! Life is so short so live life the best way you can. Forgive those who you have grudges with. Go for your dreams. Be kind to people. Stop complaining about senseless small things. Be there for your friends know matter how shitty they are because you have no idea what they are going through!! Reach out to family and spend more time with your parents!! Laugh and live and be grateful you are healthy and have been given a blessed life!! And if you need some reassurance come talk to me ;)
Mandi xxoo


4 comments:

The TMJ Association said...

Mandi,

Thank you for reaching out to The TMJ Association. We're sorry to hear what you're going through. Please know you're not alone! Let us know if we could share your blog and feature your story in an upcoming issue of TMJ News Bites, our e-newsletter, http://www.tmj.org/Newsletters. We look forward to your reply. Please email us at info@tmj.org. Thank you!

Mandiash said...

Thank you so much!! So glad for your page!! Helps a lot!! Yes of course! Anything you need I'm here :)

Lin said...

Hi Mandi,

SO sorry to hear you are on this merry-go--round we call TMJ, TMD, TMJD. The experts can't even agree on what to call it, so where does that leave us? .. For that matter.. there are no "experts" either, as the ADA and AMA do not offer a specialty, so anyone treating TMJ patients can call themselves an expert...

The only advice I can give you is to continue what you are doing, reach out to other patients, the TMJ Association has been my lifeline since the late 90's. Use them for up the minute scientific and treatment information. They "get it" They have a blog and FB page too. Research your options, ask questions, none are dumb. Because of the lack of real science, the NIH recommends exhausting all self help and reversible treatments before moving forward.

Best thing is to know you are not alone, and realizing most of your friends and family will not "get it" because using those three letter words "TMJ" causes people to assume you have a pesky little dental problem and will go away with a dental visit.. So don't feel too bad , talk, email, connect with those of us who do feel your pain. It also helps to reach out to someone you can trust like a counselor, pastor, or doctor.

And because most of us have middle names called Chronic Pain, be sure you address that very important issue . As you probably know, sometimes we will do anything, any treatment.. just to make that 24/7 pain go away. None of us deserve to live like this and there are so many different avenues to follow from pain meds to meditation , to tens units, to massage..
Sorry Mandi, i just wrote a book, hang in there.. take each day one at a time.. and know your computer can be your best friend, especially if you are like me, and have trouble talking... Good Luck with your blog, hope you can reach out and meet many new friends and people who care...



Mandiash said...

Hi Lin,l
Thank you for reaching out and reading my blog!!i know, I agree and it's sad!!i am, I'll never give up!! They want to try injections again and I'm scared. This can either make the pain worse or lessen it so I don't know what to so yet?! I do love all the Facebook support pages though, they really help!
Exactly, Mandi has a boo boo and doesn't want to hang out....so not the truth!! What we deal with on a daily basis is indescribable!
Thanks love! You too, I'm always here for you!! What a crappy want to live and it's so isolating so I appreciate the support so much!! Keep in touch!
Xxoo Mandi