[catra121]

So...in 2009 I was hurt at work and now have CRPS in my left ankle. Have posted about some of my more recent troubles after getting to lumbar sympathetic blocks in January and the quick downward spiral since then. It's been frustrating because it's like I am the patient that no one wants to touch now. I don't even know whether these new problems are related to the CRPS and the blocks or not (though the timing makes the chances of it not being related seem like that would be QUITE a coincidence).

Anyway...basically I can't even take care of myself anymore. The hypersensitivity in my back, neck, shoulders, arms, thighs, etc is spreading and INCREASING at an alarming rate...and the PAIN in my SPINE is SO bad...last night I couldn't sleep at all because it was so bad. Did get hours of sleep later in the day so it's not like I am not sleeping at all. My mom who lives out of state is coming to live with me and my boyfriend so that she can take care of me on a daily basis because the neurologist and my primary care both say I cannot be left alone. But boyfriend has to work (someone has to pay the bills, and mom doesn't work or do anything so it's not like she has any reason NOT to come).

But sitting here, without a diagnosis and therefore no plan of treatment gets one to thinking about a lot of things. I have always felt blessed to have the people around me that I do, friends, family, boyfriends family...all of whom have never once doubted my pain and have always offered to do anything they can to help me without ever losing sight of the fact that all I want is to be normal. It's something you can't really express to anyone what that means and have them truly understand unless they've been and/or are going through your pain. These people have kept me strong and focused one the I WILL get better attitude that allowed me to continue a normal pace of life for about 6 months before fate stepped in and it all fell to pieces.

These things happen...and the happen to good people...and no one will ever know why. But I'm 27 years old and I need to use a walker to walk around the house...I can't see straight most of the time between blurry vision, double vision, dizziness...whatever...I can't stitch which has been my primary therapy to help me through the pain in the past...the pain is so much worse than it has ever been...I feel weaker than ever before...and I have a headache that just can't be defined in any way that makes sense...and a never ending list of other problems.

But I'm still surrounded by these wonderful people (and the friends are all internet friends because I'm such a hermit in real life that I just can't deal with people in real life...lol). And I have the worst luck with doctors. I think it's mostly my fault because I just put faith in the doctor to know best and I don't question or take control of my own care. After this last disaster following the block I now bring people with me (as well as lists of questions) who can be my advocates and get in the doctor's/nurse's faces to keep things focused and to get answers. I know I need to be able to do this myself...but until I can I will continue to bring these people with me to make this happen.

My neurologist said I don't need to be seeing a pain doc at this point and my family/friends agree that there's no real point in trying to treat the CRPS in my ankle until we fix these other issues first. But my primary care doctor referred me to a pain doc that he thinks is very good. And everyone has said just put that off until you get the rest sorted out.

But while I was awake last night because I couldn't sleep because of the pain I thought...no...this is the perfect time for me to meet a new pain doc and decided if this is someone who will work for me. I've thought a lot about what the difference between this last doc (who messed me up so bad) and the one I had before (who gave me 6 months of being normal before he stopped seeing patients and I was forced to switch). And after a lot of thought I realized that the good doc asked me what my goals were and the bad doc did not. So why wouldn't I take this time while I'm going through this other stuff to discuss my goals with this "new" potential doc. To discuss what has worked and what hasn't. And to discuss possible treatment plans that may work for ME...rather than rushing into some procedure because that's what this doc likes to do. I feel like now is not the time to do any procedures or treatments for the CRPS because they are pointless until this other stuff is fixed. But why wouldn't I want to develop a trusting relationship with a doc and go over what the right treatment plan for ME is while all this other stuff is being diagnosed and hopefully treated? So I am in the process of trying to make that appointment although the dr's receptionist seems like an evil witch determined to make things difficult despite the fact that my primary doc spoke to the new pain doc personally about me and she said she wants to take me on. But I apparently have all the time inthe world to work that out.

But yesterday I also decided to leave the house and go to my boyfriend's family get together for his sister in law. I went back and forth over whether it was worth it with how much pain I am in...but decided that leaving the house for something other than going to the doctor would be a good thing. I worry because my boyfriend has a nephew who is 2...his name is Daniel and he is SO smart. And he likes me for some crazy reason. He was very disappointed that I didn't come to the last get together and talked the whole time about me and how I needed to get better. He came with to the last LSB because my boyfriend's mom drove me and she had to babysit. I felt guilty because a dr office is no place for a 2 yr old child. But he is so well behaved and so good and it couldn't be helped. But my big concern yesterday is that I don't want him to see me in REALLY bad shape. He's 2...he's impressionable...and a kid should never be exposed to real suffering in someone they care about if it can be helped. But I figured I could hold it together for a couple of hours and I didn't take the walker, just leaned on the boyfriend for the walk to the car inside and sat in the closest seat to the door. I played with Daniel for an hour or so and he gave me a picture he colored in with some typing on it. It said, "To Aunt Nicole. vghoijoicjfoij (Daniel's version of Get Well Soon) Love Daniel" And there were a bunch of stickers on it. Apparently he was so excited because I might be coming that he kept looking out the window to see if I was there yet. He asked if I liked the picture. I said I LOVED it and that I would put it where I could see it every day...and I did...it's taped to the entertainment system in the family room since I can't make it to the kitchen often to see it on the fridge.

Anyway...it was an exhausting...painful trip...but totally worth it for the soul. I am SO very happy I went. And the picture hanging on the entertainment system makes me cry everytime I see it.

I also run an online cross stitch board. And the girls on there are incredible. Their love and support has been incredible...they always make me cry with their love and support. Not being able to actually stitch has been hard on me lately. One of the girls needed a double lung and heart transplant and she got it finally just over a year ago. She's made me so strong through all this both before and after her transplant that all I can hope is that I can be as strong as she is. She's like my yoda man...and one of the girls gifted me a chart called Small Miracles today. It really touched my soul and once I can stitch again (hopefully soon)...I will start it. Because once you lose your health and it feels like the world is just crashing down around you...it really is those small miracles that can bring you back again.

Anyway...I don't know if any of this means anything...but I just felt the need to share these thoughts with people who get it. They've been swimming around in my head all day...and I wanted to get them out...