New Day

That blood patch is looking pretty good to me right now! LOL I've been doing some searching online and it seems that this is the solution to my problem. More needles. I'm done with docs. I shouldn't say that, but I felt better before. I decided it was time to find a neurologist because I noticed I was a bit more spacey than usual. Background - I'm eating meat again! Is there truly a connection or do I just want there to be! I never full out gave up meat/products, but I had cut down drastically to maybe 4 items month. Not a whole meal, but maybe a slice of cheese one week, butter on toast another, things like that. Now it's full out eating everything. So I started feeling a bit weird- that's the only way I can describe it and I knew needed to have a neurologist anyway. I'm on SSD and I'd be up for review eventually. Who has headaches everyday for 6 years and not has a neurologist? Me! This is why people! Crap like this happens to me! I'm supposed to be this positive voice aren't I. Just take this as a lesson that you're not alone. I know this is happening to someone else out there. You have a kindred spirit.:0) We will get through this, with a small amount of bitching. It's healthy. I'm at the bargaining stage, just get me through this and I'll exercise and eat healthy! LOL For those who know me I'm in real pain because I never offer exercise as an exchange! I just want to feel better. Is that to much to ask? And now here comes the water works. What did I do that was so awful in another life, because I'm perfect in this one! LOL I can always make myself laugh! I'm done for now.

Live.Laugh.Love.Enjoy!
 

Just Pain

Am I a masochist? I was perfectly ok with the pain level I was at and I had to up the ante. (is that the right word?) This spinal tap has kicked my ass. I called and spoke with the nurse. She thinks there's a leak and that's why I'm still in so much pain when I sit up. She wanted to schedule me for a blood patch. WTF Don't like how that one sounds. She explained it to me and I still don't like it. For those who don't know - it's when they take some of your own blood and inject it into the puncture to cause clotting and close the puncture. Not going to happen. Not comfortable with it.
I was leaning towards having the Botox treatment for my headaches. At this juncture, I'm going to pass. More needles sticking into my body. No thanks. I'm leaving well enough alone. Just get me back to where I was before I walked into his office and I'll be happy!
I was able to see my results online and what I can see came back normal. Yay!! They still don't know what's wrong with me! LOL Damned if you do, damned if you don't. I have lupus. For reasons beyond me some docs don't want to believe the problems with my brain are from lupus, yet they have no other answers. And I'm left with no answers, no closure, no questions anymore ( because I never get answers!). Just pain. Enjoy the day for me!

Live.Love.Laugh.Enjoy
 

Nothing good to watch

Hello World!
I had a spinal tap on Tuesday and I still feel like crap. Losing confidence in my new neurologist. I can't catch a break with those! Any way. I've been watching TV because what else can you do while lying on your back? -Don't answer that one! LOL There are very few positive things on to watch. I'm watching Bang for Your Buck. I really liked that show. As I'm watching they are totally ripping these peoples' homes apart. I think their homes are beautiful. As I flick through the channels I see a lot of  infomercials. I can't take it.
 

lupus Walk

He lupus walk in West Hartford his year was amazing. I got a chance to see old friends and meet some new ones. I wish I had taken photos to share.
I'm back facilitating support groups. The New haven one is opening back up this month. And we are doing a one time group on World lupus Day in New London! So happy to be back home in CT.

I'm back!

Well I'm back in CT with the whole family. I'm actually thrilled to be back. You don't realize how good things are until you live somewhere else. CT isn't so bad. SC is a beautiful place to visit with very charming people. I look forward to visiting next year!
I drove 15 hrs straight and I'm paying for it. I'm in PT and on Valium. What the f#^*!
This too shall pass. Good to be home! Which is under construction due to a broken pipe over the winter!
Live.Love.Laugh.Enjoy!

Merry Christmas!!

Happy Holidays! It's been awhile. Things are still unsettled. Everyone is trying to figure out.... things. For now my day is quiet and peaceful. My husband and I are enjoying each others company. The kids are giving me a break. This is nice. I'm going to live in the moment!
Live.Love.Laugh.Enjoy!!!

What to do

My second to oldest child moved back home troubled. He had been living in the streets (not necessarily on the streets) and been exposed to a lot. He called me when he was mentally and physically tired and had finally had enough. On the street thousands of miles away with no where to go. Of course I said come home. I'm not that heartless. I tried to find somewhere for him to go first. But it's not that easy. You see, my son is a transgender.
He hasn't had an operation or started hormones, but he was trying to live as a woman. It hurts my husband to even think of his son as a woman. (that's all I'm going to say about that one for now). I was devastated when he first told me. My world felt like it was coming to an end. Like my son was dying. Intellectually I know my son is still alive. He would just be a she. But as a mom, my heart still bleeds. I've gone to a transgender support group to get some of my questions answered. The main one, "why"? And I learned so much more. Maybe I was more open to hear because these women weren't my baby. The main thing I got from the meeting was how unloved and alone they felt in the beginning by their family. At such a crucial part of their lives when things were turned upside down there was no family. I learned that the suicide rate for kids going through this is 55%! I love my child. I never want him to feel that way. So I had him come home. There are rules. He has to see a councilor. Not because I'm trying to change him, but I want him to be safe. 
Another thing I learned from my new friends was it takes time to accept. I have every right to feel the way I do. It's all a process. I would be seeing the councilor too, but financially it's not possible. It's more important for him to see her than me so I'll continue to go to the group meetings. ( for once I'm not the facilitator! lol) And I have you guys. I'm surprised I haven't landed in the hospital with all the stress.
He learned some other unsavory things on the streets when I lived up north that I said I would never put up with again while he was living in my house. Meeting people on the internet is one. How do I trust him? I can't keep him locked in the house forever. He's testing me I think. He went outside to smoke a cigarette for 3hrs. He had a journal with him and he said he was sitting in a quiet spot in the complex and was writing and talking on the phone. I didn't go out looking for him. I called and got the voice mail. I called a second time and that's when I got the story. I don't want to have to follow him all over the place. He's 22 and should be able to go out. But I don't want the same behavior as before, just a new place. We talked about this before the 'cigarette break'. I have a habit of blowing things out of proportion.(so they lead me to believe). I really don't think I do though. I think I'm right most times and years later they'll admit it, because that's what teenagers do. Hey, I was one once. I'm going to stop here, before this turns into a book. (one day it possible will- would you buy?!lol) For now I hope you all enjoy your day. I'll be back soon!
Live.Love.Laugh.Enjoy