What support means to me

I have been reading through the blogs posts. I saw one really upset a lot of people, but it got me to thinking about what support means to me.

Support means to me that you all will love me enough to say what I need to hear not always what I want to hear. I have been dealing with TN now for 18 yrs, but that does not mean I do not have things yet to learn. There will be times I will speak when I think someone is heading towards a fall off a cliff. Those are mainly rush into surgery and when one talks about taking high doses of opiate medications. I understand fully wanting this pain to end trust me, I do, but I have strong feelings that neurosurgeons will often see TN patients as easy marks due to our pain and will push surgery. I once saw someone diagnosed and with no MRI done in surgery five days later. On that one, a lot of us tried to get them to slow down. They went ahead and came back later stating their diagnoses was not right and they were now worse off than when they started.

Another one is a person commenting about wanting extremely high doses of opiates. I do not believe one ends up like the non-functioning addict we often see on the street, but I have seen where TN patients have become addicted. One person got all the pain meds they wanted and later came back saying they were going through horrible withdraws to the point they called their medications master as the were enslaved to them. They were encouraging people to take as little opiates as possible. Wise advice, based on a hard learned experience. I was grateful to read they are through the worst of the withdraws and doing much, much better.

I was chatting with someone earlier and I told them while I am known as everyone's mother, I respect you all are not my children. I totally respect everyone's right to make the decisions that they feel are the best for them. I will share based on my personal experience. I will always strive to keep my swearing to a point of non existence but people who know me will tell you if I am swearing things have gotten really bad and that is when I am going to need the most help. I will share in another blog my MVD story and the problem that caused my TN being so rare the neurosurgeon said he had never seen it in 13 years of practice. I will also share the time the neurosurgeon told me that any more open skull surgeries would kill me. Talk about it being hard to hear what the doctor was saying, but once I got done shaking and crying over that news, I realized I could trust the doctor as he was really honest about my odds though they were really bad.

I am going to continue to read through the blogs and discussions. Together I believe we can find the solutions we are needing.

My heart is with you all! <3 ,


((( Sarah ))), I look forward to reading your story. I appreciate you sharing your thoughts and agree that if I’m swearing, you know it’s bad! Lol I joke with my husband that TN has given me a whole new vocabulary…but he gets it!
Learning and leaning on each other is good, respecting one another is even better.
Take care, Mimi

God bless you Sarah! ♥