Don't Let It Get You Down

My friends have joked that I am a Pollyanna. I try to face my day with a positive attitude. When faced with adversity I think, "Someone else has it worse." When I think about having the MVD surgery I think, "Its only a few months of my life for a long term result." I read the stories on here and think , "I am so glad we have each other." When I look in the mirror and see the changes TN has made, I think, "Not bad for 43." (lol) When I look at my significant other and think of all he has had to deal with, I think, "I am so lucky to have him." And then there is my job, "How wonderful it has been that they work with me though all of this." My children are so in tune to my pain and are trying so hard to help me though it. I think, "I raised great kids."

I am truly blessed. My life is surrounded by people who support me even when they don't fully understand.

There was a point where the true meaning on TN, the suicide disease almost got me. In Feb of 2009 a month after my ENT doc preformed a sinus surgery to correct the only thing he could find wrong with my face, a broken cheek bone that had healed badly and a deviated septum, I came out of surgery in the worst pain I had ever felt. Drugs wouldn't touch it. I couldn't sleep. I cried and cried. In the middle of the night I would do every thing I could to find relief. I even had thoughts of jamming a knife into my face. It really was my darkest time. The pain would radiate up my face. It was always there. I lost 27 lbs in 1 month...hell of a diet. But through it all I was still a Mom, still an employee, still had to live. I faced every day thinking, "At least I'm alive."

Hi Bobbie

You sound as if you've dealt with alot and still have a postive attitude. The sinus surgery sounded like a horrible time in your life but im glad you got through it.

I just take one day at a time as i have a 17 month daughter who needs her mummy to be strong. Some days are far worse than others but i know that some people are having a harder time with this than me. Having a good support system around you does help alot and you sound like you have a loving family. Hopefully you continue to stay postive throughout this. Take care



Sweetheart, it sounds like you have endured some truly darker times, like I have. I am a Mom who just now feels she has hope again to be a viable employee. It's harder than most people know, trying to be "Mom" when it feels like someone is burning (in my case) your face, gum, tongues and teeth from the inside out!!!!

But, like you, I am surrounded by people who truly bless and enrich my life. The fact is, though, that sympathize, as they may, they cannot possibly understand. "The Suicide Disease", what a nickname. I remember thinking, "Oh, take heart, chickie-poo (to myself), you only have the suicide disease"!!!! Wow.

Yes, you are alive, vivacious and making impressive and helpful contributions to our site of support here.

I just got new the other day, around the same time I got on the medication which finally has me stabilized again and ready to face the world, that a person I have known well for 21 yrs. has what is probably terminal cancer. His sunrises and sunsets are counted, in a probability of 4-7 yrs. My story knows no end, yet. Every time I look into the faces of my kids, I am so thankful for that. I have a great guy, super Mr. Fiance Dude! Well, we'll get married if I can find a new career (I want enough money to do it right this time. My marriage to my late husband was quick, but happy. I was in borrowed clothes, and hardly anyone was there).

This time, I want to be surrounded by family and friends, and look at them all, the people who have been questioning sometimes, "is it all in her head"? No. It's not, of I would be wanting to take more of the medication that I am prescribed, instead of using it conservatively. IT WORKS! I THINK I'M FREE!!!

You have such a strong spirit. I think you will find your way free of this pain too, someday.

In the larger scheme of things, it is refreshing to see someone who focuses not on the gloom and doom of this condition, but on the things which make it tolerable. It is what I had to do for sooooooooo long.

Everyone is not as blessed as Bobbie, or Stef. They don't have understanding kids, a great partner, etc. That is why I love this site so much. It is here for people who have no one. We are all equals here, and understanding abounds.

Yes, here's to being alive!

Hugs, your friend,


BTW - excuse type-os. It’s not the meds. It’s the rush. My fiance is waiting to eat breakfast. I didn’t proof. Sorry :slight_smile:

LOL I'm not the spelling police. One of the hardest things for me to get used to is how the meds block signals from my brain to my hands. Spelling errors happen frequently for me now. I want spell check for me...You could type in pig-latin....I'm cool with that as long as they add a translator on here...LOL

Thank you for sharing with me.

Una, I could not imagine having TN while my children were babies. Mine set in when my youngest was 4. That was bad enough. The frustration of not knowing what was wrong and tring to be a "good" mother. I hope you have support and understanding of this life altering blight.

My "babies" are 21,20,12 and 10. Monsters, all of them. (LOL)They have lived with TN as much as I have. They see the pain, they know my good days and bad. They have seen the attacks come on so sudden. Recently my youngest son (12) asked me if the tumor was back. I lied and said "No" He told me he sees the pain in my face.

Thank you for reading and sharing.

Hi Bobbie,

I am also guilty of having a "pollyanna" attitude but I would hate what the alternative would be for me. Please keep sharing and helping our members when you can because your positive energy is great!

I am also blessed to be here so I find it hard to complain or let the TN win because I have made it through so much and the TN pain actually saved my life because I kept going back until a larger cancerous tumor was found that would have taken my life in a matter of months. I survived and am thankful for all these extra days I would not have had . . . even to they are full of pain and a constant burning in my face, I'm still here and cancer free. I have a rare tumor condition, like a walking time bomb so to speak but am being monitored by a great team and that is key.

My kids love me for who I am and understand past their years. My youngest is five and my oldest is sixteen. I also have s stepdaughter who is twenty. They keep me focused and because my memory has been effected so much they are my little memory banks and help us stick to the schedule.

This is all new to them because before I was always two steps ahead, the family didn't need to remember a thing on their own or do much for themselves. I also worked a corporate job and volenteered for many things. Now Im on TLD and my kids and ex have stepped up way above my expectations are doing things for me to make my life that much easier, they worry about stressing me and seem happy to help. This is new to me :)

I am blessed but not only for my new lease on life, and my kids and their health, I have you my frieds here who have also been here for me on my really bad days and big changes in my life. Knowing I have friends here that mean so much to me and I can go to them anytime helps me stay positive and want to make them proud too. I'm glad to have you all and seeing your post and sharing with others helps us all.

Love, hugs and prayers,