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HOME.....Thank goodness I'm a homebody and hardly ever get sick of being home. And I Thank God this jaw disc popped out in the Fall rather than have destroyed my/our Summer.

It's been 3 months since I heard the "pop" of the jaw and life changed for the worse, most likely for good. 

I've been in way more then ever and sometimes it's fine and other times I get stir crazy, lonely, isolated. Luckily I have Joey but with working for Paint Nites now and his main job he's hardly ever home...and that's fine he's a hard working man and I appreciate him and am very lucky! But I'm home alone a lot which is great for my jaw pain but hard on the heart.

Trips grocery shopping or running errands are pretty much the only time I leave this house. Hardly anyone talks while running errands so it's easy :)

But last night we had a family dinner and I realized how badly it is to be out in a social environment and how much of a struggle it is...and all I wanted to do was be HOME. In my pjs under the heating blanket with my wine, dog and tv....where I'm happiest and the pain is minimal. 

If you know me you know I'm chatty, I'm loud, I laugh A LOT, I make everyone laugh and I love being a goof. I'm outgoing and been told the life of the party. But for my first outing last night I struggled. And I realized how bad this jaw disease, TMJD, jaw disc dislocation, whatever you call it it really really sucks!! I wasn't at all myself. I was sad I couldn't join in some of the livily conversation or talk about me and the excitement/nervousness of Aruba coming up. I couldn't make them all laugh and sitting in the chair I was in pain and felt like I was 90:(

I get it, who cares if I have to wear a mouthguard every time I talk to people. No one cares right? We'll I care!! I have insecurities as does every girl and this big plastic thing in my mouth doesn't help. It's ruins my smile, the way I speak and makes me feel ridiculous. So I'd much rather be home living this way then out at all times. But that's not healthy.

Since this disease spreads to my arms, neck and back, it's hard to sit. And with the Degenerative Arthrirts in my jaw joint it always hurts and throbs. Anxiety and talking and stress bring the pain on so much worse.

So being home I'm more happy, comfortable and the pain isn't too bad. 

Last night I realized this life I've been given right now is terrible. I can't be who I am. I can't laugh as loud. I can't talk as much. I can't bend over and kiss my dog. I can't sneeze or cough without holding my face. I can't lay on my face. I can't eat anything that's not super soft....ever again! I can't dance and jump up and down acting like the goof that I am. I have to be careful around people and hugging and kissing people just incase they hit my face. I can't have a few friends over because of the anxiety and pain that would set in. I can't be in a loud atmosphere. I can't sit too long I can't lay back too long. I can't sleep without meds. I CAN'T BE HAPPY! 

I know I'm lucky and blessed with some things. I have an amazing family and one of the best most caring and selfless mothers in the whole world!! I have love and am in love after 8 years with Joey. He's my best friend and for some reason is willing to be with a "sick" person. I have my bulldog Bailey who's my life! I have a home. I have food. I have the best job that allows me to stay home. I have a car, clothes on my back and a yearly island vacation and I do have a lot of good I'm grateful for! That's what keeps me going! 

I have some amazing friends who try and understand this all and reach out and just care and want to come visit. 

 And it takes time to get over the hurt but eventually you stop caring about the ones who don't reach out or care or understand. I don't have time for that! My health is way more important than selfishness! Sorry!! I was hurt for awhile by some, and now I choose to focus on me and my health and happiness! And if I end up with a handful of friends after all this then those are the handful of real, true friends I have! Some people just aren't worth it especially going through all this...

I would give anything, ANYTHING to have someone be able to get this jaw disc back in for good so I can have my life back!!! I don't know if this will ever happen. So I have to go on. I have to be strong and I have to say NO A LOT and I know friends and family and sometimes even my mom and BF don't understand that. I will push myself to attend big events in family and friends lives but there will be days I'm too pained to attend. I'm sorry! 

And no I don't have a toothache, I have a Jaw that's painfully throbs like a broken bone(pain goes from a 6 to an 8) and a neck and back that ache and hurt everyday. I feel like a sick person and although I don't have a deadly disease (thank God) everyday I don't feel well and this could possible be for life :( 

Hopefully we can have people over for a few yearly events since home is where I'm comfortable. But that comes with how I'm feeling. This is now my life. I will lose some things and will have to pick and choose where I can go. I will have to pick and choose what I can handle due to stress and anxiety. I will have to pick and choose if I can be ME or not. Being pushed to go out or hang out and attend stuff is very frustrating so I hope there's a better understanding as to why "Mandi can't come" or why "Mandi isn't here...again"!! 

I don't know why this happened to me. Bad things happen to people all the time. I don't want this pain anymore and I'm sick of it but I guess God thinks I'm strong enough to handle it so all I can do is show him he's right....

Xxoo

Pain thoughts...

Live life to the absolute fullest and appreciate all the good you have! I had 4 years of zero jaw pain and talked as much as I wanted and ate whatever I wanted and felt great! But I wish I lived it better then I did. Without complaining so much and wanting what I didn't have and focusing on things that didn't matter. As I sit here in pain as usual, week 12 and ongoing (still happy though) all I can say is be happy and grateful and don't stress over stuff that's small and meaningless! Appreciate your life!! I'd give anything to have those 4 years back and to have one pain free day and be able to laugh and dance and socialize with big groups of friends and eat pizza and sleep and enjoy the holidays and upcoming vacation....anything!!!! 💕💕💕

The fear got the best of me..

Had a bad emotional night last night. Cried and got angry and cried. It's been 11 weeks since my jaw disc popped out AGAIN, and I haven't really been allowing it to destroy my life. But last night the fear set in.

With the Holidays coming up, our Aruba vacation and a few events, I don't know how I'm going to survive them with this pain? The pain is not as bad all day if home (which I always am) hardly talking and eating soft foods. I wear my mouthguard all day and night and rub blue BioFreeze on my face throughout the day. But  when people come over and socialize the pain sets in with a vengeance within 10 minutes. All we do is talk to friends in Aruba so how will I get through this?? I can't tell everyone I can't talk, that sounds ridiculous but I will have to do what's best for me and this pain!  

I don't understand why this has happened? I don't understand why there is no cure and they can't get my jaw disc back in for good? I don't understand how the doctors and surgeons expect us to live like this?? This is no life! This is an unhappy, pain each and everyday, isolating, lonely life and for some reason us tmj, tmjd, jaw disease suffers cannot be fixed??? And I read posts of sufferers being so depressed, wanting to give up and hating their lives and some say they can't go on anymore:( 

Wish there was more time spent finding cures for us!!! Chronic pain that causes you to sit in the house all day everyday not talking and hardly eating, on a heating pad or ice pack all day, some taking tons of meds, some wanting to give up, is NO way to live and very very unfair! It could not be worse for us, I'm sorry but if you haven't felt what we feel you wouldn't understand! 

Luckily I am happy this time around and stronger and more positive and this hasn't brought me down a great deal typically. Of course I have good days and hours and bad ones. But in 2010 when this was so much worse and the doctors and dentist had me on 9 different meds, I was very very depressed and I wanted to give up. I was done!! And if that fall on my face didn't happen in October of 2010...I would not be here!! As crazy and terrible at that sounds, this is how tmj, tmjd, chronic pain and jaw disease sufferers feel and it is not fair!!! That fall saved my life!! Now going through this all again I don't rely on meds to get me through I rely on strength and hope and support and amazing TMJ and TMJD Facebook pages!! And my family and some great friends!! And of course not talking, a mouthguard, hardly eating...you get it...... AWFULNESS!! But I wake up each morning, thank God for another day and fight through! 

Don't ever give up my sufferers!! Fight the good fight and pray and reach out to friends and family when your feeling down! 

Maybe one day they'll have a cure for us but until then keep on fighting and I'm here for anyone who needs me!

Xxoo 

Happy first Sunday of November!

Happy Sunday! It's crazy it's already November! Gonna try and update this blog once a week. Best way to communicate since I can hardly talk.

I decided to try no meds with this chronic jaw pain. One week I've made it so far and it's not easy! But a life on meds is not a life I want. Been there done that for one whole year and it's like poisoning your body.

Plus for me the meds make me incredibly moody, down, depressed and all over the place. But they do help with the pain so it's a lose lose situation. 

Weekends are tough. Weekends are when people usually chit chat and get together. My mom came over Halloween night for 3 hours and I was in incredible pain the whole time. Made me really sad to sit there not myself and not being the goofy loud person I usually am. I worry about my mom because no parent wants to see their child in pain. I worry about my friends and losing friends because what kind of friend am I?? I can't have them over and talk for hours. I can't meet them out (not like I do anyway) I can't attend parties coming up or get togethers. I should worry about myself but I worry about everyone else and how they'll handle this if this is my life from now on. 

Many have walked into this house and said instantly my face is so thin or I look so thin. And then some have said I don't look sick and I look fine. Hard to hear but I put on a brave face,I talk as much as I can and I don't ever want people to see me down or not myself. I fight to continue to be Mandi and make people happy and laugh...but it's hard! 

 I've told Joey(boyfriend of 8 years) he doesn't have to deal with this and he can go find someone who's healthy and can give him a happy fun life. I feel bad we can't do anything and he sits in most weekends. It's not fair to him. But for some reason he loves me and doesn't care. I just hope all this  doesn't  destroy my friendships and relationships. No one wants to deal with a sick girl. I'm sure it gets annoying. Again, I should worry about myself 😊

With the Holidays coming up and our week and a half yearly vacation in Aruba, I'm so scared! I don't know how I'm going to get through this all. At home, I have my heating pad, my ice, my blue joint cream that I rub on every hour and tuns my face blue (if you see me blue faced you know why;) my mouthguard and my comfort. Even if you do tell people you can't talk a lot and your in pain they don't truly understand. So I don't know how I'll get through my most favorite time of the year but what doesn't kill you makes you stronger right?! 

I have good days and bad days, good hours and bad hours. I wake up and immediately feel the soreness in my jaw and pain. I cry a lot and I do feel bad for myself, sorry. Your mouth and jaw is one of the most used body parts. Talking and eating are the main ways of life. So having that taken away is something I'll never be able to explain. But it's not fair! I can't spend my life not talking and hardly eating so to be honest I am scared everyday! Afraid of the future... what if they can't get this disc back in and I'm in more pain then now like I was in 2010...then what?? I don't think anyone understands that this is a lifelong injury and all they can do is try to get the disc in and it'll maybe stay in for a few years until it pops out again and this all is repeated for life:(  I know I'm strong but this is one of the hardest things I've ever gone through and this time around I'm handling it much better, but I'm just so sad and angry that this happened to me!

Aside from this, some know some don't, I've been struggling with Infertility for about 2 years now. I've had one Chemical Pregnacy, one miscarriage this past March, 3 surgeries and I've seen Doctors more then I can count. It is the most emotional, sad, heartbreaking thing I've ever gone through and I'm still not over the miscarriage in March, as I realized this past Halloween. We would have had our baby in October and dressing he or she up for Halloween, so I balled a lot that day. I guess my hearts still not healed💔💔

As a child all I wanted to do when I grow up was get married and be a mom to 3 to 5 kids. But for some reason in the back of my mind I always knew I'd struggle to have a baby. I just knew it and here I am....crazy!!

I think I've seen about 18 friends get pregnant easily and have babies. And you want to be happy for them but it is SO hard!! So hard! Now, I can't attend baby showers and I have a hard time being around anyone who's pregnant. Seeing the constant announcements and baby pictures on social media killed me so I took a 5 month break from FB. I'm back on Facebook now but only with a few close friends and family. I'm sure people are offended that I'm not friend requesting them or vise versa, but going through all this pain and not being good company I only want people who truly know me and understand me in my life right now. And I hope people understand that!! 

I don't know what's going to happen with all this. I'll never ever give up on trying to have our baby!! There's nothing wrong with me so they can't figure out why I can't get pregnant. So frustrating! I need a break from it right now though so January I'll consider Fertitly Treatments. But I'm not healthy right now and I have to take aspirin everyday so I don't think it's the best time to get pregnant, but it's in Gods hands!! I've never believed "everything happens for a reason" until now. I'm pretty calm this time around with this jaw Injury because it's out of my hands and there's nothing I can do. Last time I was fixed for 4 years because I fell on my face....so maybe I'll fall again who knows. Whatever is suppose to happen will!! God only gives us what we can handle!! 

Thank you to all those who've reached out or came by for a quick visit and made me soft foods. You don't know how much I appreciate you!! Got my family and my amazing dad and a handful of good friends, so thank you all!!  My mother is my angel and even though she comes here talking her ass off, I love that she's here everyday!! Best mother in this universe!! I'm so lucky!! 

The bf has been amazing throughout this too and I do feel badly for him having to deal with all this crap!! I want to give him a child more then anything in this world and I want to make him laugh and happy so I worry and feel terrible:( But either way he wants to be with me and I am lucky to have him too....because most guys would leave! 

I'm so lucky to have one of my best friends (my Yang) who lives a house away from me. Everyone gets busy and has their own lives so it's nice to know a friend is steps away and I can text or go over anytime! And her 7 year old daughter is one of my best friends too :) it makes this a bit easier just knowing I have friends and they are steps away!  So reach out to friends and don't isolate yourself! 

Always tell those who are there for you how much you appreciate them and thank them often!! I'm learning this through all this pain and want to be a better person, friend, daughter, girlfriend! 

My prayers are with anyone going through hard times! If you need me I'm here for you! And to anyone who's been given a blessed life, never stop thanking God and appreciating it! Because some of us would give anything to have what you have, even through your most stressful difficult days :) 

Xxoo Mandi

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