Life After Acceptance

Archive Blogs (Read Only)
1

My Inbox is full. I wish I had time to answer all of my dear friends here who have written to inquire as to my condition. The truth is, I wonder how they are, as well, and the new members who have written to me. I would love to know your story. I empathize with anyone who is living this "nightmare" and making life out of well, we know what the doctors call this, right? Ahhh . . .please forgive me. You, Elaine, special note, I've been quiet, but thanks for not forgetting me, if you're reading this.

Ok, so I was a Mortgage Closer, then Processor, then Originator, then Closer again, the Credit Processor, all of which required A LOT of verbal communication. Well, guess what is the 2nd chief regions my Type II attacks happen? Talking. Oops! Career change is inevitable.

These past few months, I've been soul searching, sometimes finding that an hour or two have passed as I search my memories for tools from the past, and drain my brain for solutions for the future.

My teenager is angry because I fell down with this disease, therefore, I cannot help her with getting a car, like, she says, most kids her age have. I mean, "what kind of parent is like that"? My 9 yr. old is still in the "compassion" stage. I'm wondering when the other shoe will drop. I want to scream, BUT I WORKED WITH THIS PAIN FROM 2003-2008, TO SUPPORT YOU GUYS, WHEN I THOUGHT IT WAS JUST HORRIBLE TMJ!!!! YOU SHOULD BE PROUD OF YOUR OLD MUM!!! WOW!

Then, there's my husband. "Do something for yourself!", and "I married the most beautiful woman in the world only to find myself pushing around a (proverbial) wheelchair. I have pain! I fight it to take care of THIS family, which is NOT MINE!" (Ok, that stings, but he had been drinking, due to the sheer sadness of being broke and laid off - AGAIN for the second time in two years, and with a new wife with a chronic pain disorder. Anyone reading this will probably deem him a jerk, but he has done a lot to show that he does love us. He's just venting. I do it.)

If my girls' father, my first husband were alive, I know he would be more compassionate. He knew the girl in the suit with the near to corner office in a prestigious local bank and knows I would never have asked for this.

I have not been as active lately, but that does not mean that I have not thought of many of you every day as I try to figure out what to do. Every day, I ponder the answer to this question as the big 4-0 lingers over my head this summer, the age when most already have a settled career path. Me, I not only have to fight Type II Trigeminal Neuralgia, I have to fight there being absolutely no market for my somewhat diminished skill set, diminished due to the fact that guidelines change and I've been out of the game now for almost 4 yrs.

I think of you. I think of Living with TN, all of the support I've both gained and given here, and plan to give again when I have time. I just wanted to reach out to anyone listening to let you know, if you're struggling with life decisions while facing such an unimaginable challenge, you're not alone. Also, if you've written to me, I intend to write back. But, when I opened my Inbox, I had so many letters, it was overwhelming. It made me feel cared for, as if I had made a difference here. If I can make a difference here, then maybe I can still make a difference somewhere else in the world, somewhere where I can earn a paycheck to help myself and the other three people who love and depend upon me to be part of a team.

I'd like to thank the doctors who cared enough to believe and compassionately prescribe the meds which would help to the best that anything has so far.

I'm ready to run. I just wish someone could tell me which direction. Be patient with me, friends, while I try to figure this out.

Randy Jackson was on The Rachel Ray Show this morning and quoted as saying, "Figure out what you want to be and be the hell out of it"! Well, at almost 40, in a field with little work, children to support, a relationship on the rocks, and with chronic distracting pain, easier said than done, Randy.

Sending out best of hopes and prayers to all of my friends here and everyone who suffers with Type I, or Type II TN.

Sincerely,

Stef

P.S. I'm not proofing this. No time. Type-o's? Deal with it. :)

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This is very brave. Right there with you, particularly the part where you are dismayed when people are disappointed because you have been incredibly tough just to survive. Teenagers are focused on themselves, but I'm sure your daughters are very proud of you. As someone with a kid of a similar age, that's what keeps me going. All that toughness and the leadership you show here will pay off and good things are coming your way in the future, even though your life is different than you expected it to be.

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Thank you for the understanding, encouragement and caring in your reply, Mac.

I would also like to wish you the best of luck parenting while also facing this life changing condition. Of course, you are right when you speak of bravery. Perhaps, it has not so much to do with luck as with "bravery".

I relate with the entirety of what you say, and appreciate this validation.

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hi ya stef i know what your feeling iam the one who gose out working while my husband has lost his job i have my two sons living here with us aswell they dont work so i work 53 hours a week and with this horibile pain every day i dont no how i cope some times i do hope you will be ok and chin up some ting nice will come our way some time soon.thats what i say to myself every day best wishes xx

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Thank you for writeing about your husband its helpfulto know that I am not the only one dealing with a frustrated man. I think that is the hardest thing for me and dealing with all this. thank you - Sarah

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I always enjoy reading your pieces stef even though this particular ones seam is tainted with sadness… I too feel that I have reached a “acceptance” and do not frequent the site nearly as frequently as when my search for answers began so long ago. Part of me still has hope that scientists will find a cure for neurological pain conditions one day and our suffering all will end one day. Recently I’ve had to face a lot of confrontational experiences with the HARD questions being asked by drs, physics etc you name it. When you get a regime that works you don’t have too many confrontations but when things go wrong again you find yourself back in the system and you have to face your deterioration which you may not have noticed as day to day you don’t seem to change… I’m finding it hard to face what we sacrifice: team sports, dinner out with friends, a work placement, travel, etc.) I manage to block this deep down most of the time… at the moment Though I have encouragement coming from the system to realise normality. BUT can we ever achieve it ? I still live in hope and I hope that you do too ! Hang in there stef, you’ve inspired many many ATN patients

Ps no typo checks either :smiley:

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Thank you, Luke.

I find you an inspiration as well, the way that you soldier on and still have time to give a kind word to others who suffer with this.

I haven't checked in for awhile. Balancing a career, pain, household responsibilities and side effects from medications leaves me wiped out most of the time.

I feel lucky, at times, though. There are some who cannot find any relief at all at any time. There are still some pain free hours for me, thanks to my medication.

I am switching jobs this week. I needed one closer to home, and was blessed with someone who would give me a chance. I'm actually going to tell my new employer about my condition. It would explain a lot about me. I may seem mysterious to my coworkers, because I don't chit chat a lot due to pain. I have more doctor's appointments than I should. This may put me in danger of being fired. I am sensitive to light. I just want all of those things on the table to begin with. I am a dedicated worker. They will see that if I am allowed to stick around.

The boss I had at the job I just resigned from was a cold person. I hope my next boss is more human.

I could go on and on about why I resigned, but that's another story for another site.

I wish you well, as I do all of my friends here. I hope to be back, and more active with helping others very soon. It is good for my soul to reach out to those who have TN and ATN. Now that I've had a long look at the outside world again, I realize how much most people take for granted every day.

Take care friend.

Stef