Diane you certainly do have a lot in your plate and I can well imagine you must feel at breaking point.



When you are anxious about something, everything can become overwhelming. Please remember you are doing an amazing job with Tyler and the meter you have been using has been fine up until now. I can’t see anything in his numbers that would indicate that the meter is not working as it should.
A coincidence.. I read this article yesterday.
https://www.google.com.au/amp/s/amp...n/news-story/a1dfe9ac15f9bd564b99c44074098bb3
Wow that is a coincidence, most people have it in their limbs, Ashley mainly has it in her ears, she cannot go outside, other than doctor visits
Any sound will make her ears worse, like someone is stabbing her with an ice pic, then the pain leads to her entire face, neck, eyes, even teeth
Its a pain in the summer, people cut the lawns, leaf blowers, we have to leave the house and go park some where until they are down
Do you know how exhausting that is
Same thing in the winter , snow blowers, leave the house
They do offer ketamine infusions which she has had, 10 days in a row, to long to explain but they didn't help
Most people get relief with some options, but not Ashley because of it being so bad in her ears, been all over, NYC, NJ, Michigan, Philadelphia, Florida
No doctor has come across anyone as bad as her having it in the ears, so its like she's in prison. No quality of life what so ever
And she's such a loving daughter and has so much to offer some one but it's not in the cards for her, my heart just breaks
I can't even begin to tell you about the depression and loneliness she feels
She also had 2 jaw surgery's for TMJ and that made the ears worse, besides that the jaw is all screwed up again , can't have another surgery, that would kill her
So alot of jaw pain now, which makes everything worse
What people read on the internet doesn't even come close to what people go through
I belong to many support groups and it's heartbreaking to read
Its actually known as the Suicide Disease, her best friend , same age 31 committed suicide 3 years ago, she couldn't take the pain any longer and didn't want to live yet life in bed
Many have committed suicide, mothers, dads, younger people
The damn Center for Disease Control and the FDA have no idea how many kill themselves
This is not a rare disease like many think, the number is overwhelming
Its been around since the civil war
They will never find a cure for this
Its just me and her, husband died 11 years ago age 51
I do have a sister and brother and my dad , but told you about him
He's all there yet, he is just sick over Ashley
She just doesn't want to live any more ,but doesn't want to die either
I'm sorry I'm rambling on.
If I could switch places with her I wouldn't think twice
She is 33 yes old , so got this around 19 or 20
Never got to experience those years, so she doesn't feel like she's 33
No boyfriend , her friends dumped her because she couldn't go out
So sorry to keep going on,
I will stop now because it just makes me furious ,angry and helpless that she has this . Thank you Bron for your kindness
I'm sure we will speak again
