Thank you so much ginnie, your support means a lot to me.
For everyone who has cared here is an update of what has happened lately -
SO much has happened in the last three months...
Actually my life has gone to heck. In early March my youngest daughter (5yrs) was kicked in the head by my horse. Her forehead was fractured into 18 pieces. Most miraculously none of the pieces penetrated the Dura, outer membrane encased the brain. Probably because the forehead is so thick and because she is so light - she mostly ;likely flew backwards quite a ways, her brain was only mildly damaged. She had an 7 inch incision from the horses hoof (shoeless thankfully), and it completely severed the skin, muscle and nerves on her forehead, so the wound was gaping when I got to her and I could see the skull fracture and indentation. She was life-flighted to the nearest children’s hospital and was scheduled for surgery immediately. It took a couple of hours for us to get there and we got to see her for about 5 mins before they took in to surgery. I have never had a worse day.
The stay in the hospital was a week and stayed the entire time. Joe went back and forth and his aunt watched the kids. She is on restricted movements until June 9th, meaning she cannot run, jump, climb, or play the way a normal 5 yro would. It has been extremely stressful and too make matters harder -right after the accident I had to ask my husband to move out. So now I am just struggling to get my life together, and fight my way through what ever comes next. I went off a lot of the medications I was on for my neuropathy and get this - I am in less
pain now off of them then while on them!? Crazy and irritating. Because I no longer have any help in the house I have had to reschedule my Dr apps, I will now hopefully see the neuro in July - but really my condition is at the bottom of the list right now.
I haven’t written in here or visited as I have been so completely overwhelmed with life, but I need to come back. I need the support and feedback. I have been going to therapy to get through this and it has really, really opened my eyes to how much I let Joe control my life and self-esteem. He mocked my on-line support and mocked everything I tried to talk about with him. At this time I am not to sure about reconciliation, he denies he has done anything wrong, that our marriage problems are all my fault because the meds I was on made me irrational. They did, but so did his treatment of me. So now I focus on me and the kids and try to get better psychologically. He has done a lot of damage to my “self” and I have to fix it. Thank you for listening to me. I am going to try to make more contact here again, try to develop some friendships. I really, really need them.
Now I am in therapy and probably dealing with PTSD due to the stress of the last three years. But it is great that I am on less medication.
I am learning more and more about regulating my condition w/o meds and using more supplements. And by taking it day-by-day. It is super hard with me being the only adult raising my 4 kids. Their emotional balance is horrible right now, they are all suffering and depressed. I ma harder on htem than I should be - but I am so fried being the only one doing the work. They see their father 3 evenings and one weekend day per week, but he doesn't do any discipline, follow-up on chores, etc - the bones and bane of raising kids, he makes his time with them all fun. Which means when they get home and have to do thier chores - they hate mom. So I try to do more and more - but end up hurting, and then I am still grouchy and exhausted as well as in pain. Its a no win situation and so last week I told my husband that if he did not get help with a therapist, then i will start divorce proceedings. So he now has an appointment for next week he says - i hope it gets somewhere.
I wish someone knew of a miracle dr. who really knows something about ganglionapathy. I am ready to get some firm answers and a more aggressive dr. I am having breathing, bowel, vision, blood pressure, dexterity and balance problems. My current neuro is 6 months waiting to see him. Anyone know of one in California?
Thanks for all who listen to my ragging.