Blood patch

Had blood patch done today. Me and my little veins. He couldn't get the typical amount of blood. Wish me luck with what he got. Wasn't as bad as spinal tap. 

Upgrade to miserable

This has been going on too long! I have an appointment for the blood patch tomorrow. I'm done. I'm done. I'm done. I should have never went to the neurologist looking for the answers to my brain issues. This is like one of those old family secrets that you don't go looking for the answers. You just except it for what it is and don't dig for answers. Come on you all know what I'm talking about. The why is so and so they way they are, or what happened to the blank that mom had.  No one knows. Someone knows just don't go digging for the answers. LOL Hmm. Don't know if I should be laughing at that one. :0) Oh well. If I can laugh right now than let me. I'll look back at this later and say WTF was I thinking. Getting off the computer for now. My back is starting to hurt.
Have an awesome evening.

Live.Love.Laugh.Enjoy!

Dizzy

Getting dizzier by the moment. That can be taken two ways! LOL Still not back up to snuff. Put in a call to my primary last night and this morning. Last night because I took a double dose of my gabapentin I'm so off. OMG I couldn't believe it. I took my dose in the living room before I went to bed. Went to the bathroom, walked in the bedroom, saw my bottle of water by the bed and took my medicine again. Didn't realize it until I got in the bed and about 15 min later I started feeling the room spin. Call the ER who instructed me to call my on call doc. Instead of taking 900mg I took 1800mg. As I read this, I'm thinking, I'm a mess. But I don't like to think I'm this much of a mess. Any who, put in a call to primary this morning to find out what I should do about my reaction to the spinal tap. For various reasons I'm not comfortable with my neurologists office. Ran my reasons by a friend and had her speak to the nurse with me on the phone ( she uses the office) and she agrees with me. I'm not crazy. Shit isn't right in that office. So now I'm getting rid of yet another neurologist. What is this number 4? Well I'm still sitting up. Still dizzy, but not nauseas. Is that a good sign of getting better or I still need the blood patch? Time to get some answers.

Live.Laugh.Love.Enjoy!

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!