WendyB

Keeping the journal sounds like a great idea. I'd like to try that. I'll tell you my day so far and my plans for the evening: Up at 7:30 and got the dog outside. Then I had some cereal for breakfast and took all my meds. I spent most of the day knitting and watching tv. I'm trying to get a jump on Christmas presents. After lunch of a peanut butter sandwich, I did some research on the computer and took a nap. I was going to cook dinner and realized that I had miscalculated the cooking time for my chicken so tonight will be left-over chili and we'll have chicken tomorrow. For the evening, I'll probably knit a little more and watch tv and talk with my husband and daughter. Not sure how long that will last since I'm really tired. By 10:00 I will be upstairs in bed.

I'm not exactly sure when my symptoms started. I know when the severe ones started, that's for sure. I was diagnosed 15 years ago with RSD and after surgery it went into remission. At times I'll have RSD flares. However, now some of the things that I've thought were RSD flares may actually have been the beginning of POTS, I don't really know for sure.

When you're feeling down and your husband brings you a giant box of spoons from Costco.

The color is darkest in the morning and tends to lighten a bit during the day, but it does vary during the day. I drink constantly but it seems to go out as fast as it goes in. No matter how much I drink, I'm still dehydrated. I can't get the fluids in fast enough. I have a lapband, so that does slow me down. No chugging water for me.

We've been using the Clean Eating series of cook books by Tosca Reno. I like her books a lot. I also follow Gracious Pantry on Facebook. She has some great recipes and many of them are kid friendly both for eating and making. Her "mini chef" helps in the kitchen and gives his thumbs up or thumbs down on taste in the taste tests.

Thanks everyone. I'm keeping water by my bed and drinking if I wake up. Fortunately the last few nights I've slept through the night. Yay!!! I make sure there's enough there to have a big glass before I get up. In some ways I'd love to get up a few times during the night to drink, but then that would rule out the eight hours of uninterrupted sleep. Maybe I could learn to sleep drink LOL.

Chaos - I love the idea of doing your own SOAP notes. I remember when I had a very bad car accident 15 years ago and developed RSD I was told to keep detailed notes of every doctor visit, pt visit, test, etc. Seems like a good idea to do it again. And for my husband, your point about the doctor's incorrect info being in there is a good one. Jackie - SOAP is an acronym for writing chart notes: Subjective, Objective, Assessment, Plan. Subjective: What the patient tells the doctor. Objective: What the doctor observes. Assessment: What the doctor determines. Plan: What the plan of care is going forward.

Hi Looneymom, They they checked some levels when I was in the hospital but they were only looking for pheochromocytoma and they were normal for that. When they did my ttt they did not take any blood. Some of the research I did said that blood is taken during the ttt to check adrenaline levels. If I had to guess, I would say mine is on the high side. I quite often feel that adrenaline rush and it takes a long time to wear off. I couldn't sleep the other night because I could feel the adrenaline running wild and my heart rate going with it. Wendy

I've noticed something strange and I wonder if anyone else has the same issue. I also wonder if any of you have any suggestions. I have a really hard time getting up in the morning because I get very dehydrated over night. I drink constantly during the day and make sure I drink a big glass of water right before I go to bed. No matter how well hydrated I am at bedtime, when I wake up in the morning I'm very dehydrated. I'm guessing it is because I'm going for such a long period with no water plus I get terrible periods of sweating throughout the night. Any suggestions? Thanks, Wendy

Ashley, I'm so sorry for your loss. Please know that I am thinking of you and your family. Take good care of yourself during this stressful time.

I'm working on my letter now. I'm trying to keep it professional and to the point, I don't want it to turn into War and Peace. My husband thinks I'm stupid for writing it. His reasons are what if I need to go back in the future, um no, not happening. And the best one, it will go in my permanent record. Didn't that threat lose power in eighth grade? So what? If the letter is professional and factual, big deal if it becomes part of my record. I'm only stating what I believe to be the truth. I also have all of the e-mails between us, so I can show that she never answered any of my questions.

Jackie - Thanks for the welcome. Chaos - That's just insane. I guess getting shoes that fit would have been out of the question LOL. People truly are nuts, but they try to label us. Argh!

I was wondering if any of you have experience firing a doctor. I have been seeing a hypertension specialist since the beginning of June. I went to see her when my local doctors didn't know what to do with my blood pressure. It originally was not responding to any blood pressure medications but by the time I saw the specialist it had crashed and was see sawing all over the place. The specialist is at a large teaching hospital in a large city a good distance from my home. At the first visit I did not click with her. She spent a lot of time looking at her computer and not at me. She spoke down to me and she was "the doctor" and I was the lowly patient. My husband liked her because she spoke with authority and knew what she was talking about. Um, not really, she just sounded like she did. She did not take me seriously at all and basically poo pooed my symptoms. Same at the second visit. At that visit I didn't have to see her again for three months, but I was supposed to send her my blood pressure readings each week using the medical center's website. Reading communications from her office, it's obvious that she either didn't read the messages or didn't care. I'm not sure in which alternate universe 102/42 is a good number. Since I now have my diagnosis, I really don't need a hypertension specialist so I don't need to see her anymore. I would like to tell her that I don't need her services any more but that I also wasn't satisfied with her care. Now I'm always the good girl and would never do half the things I would love to do. Probably the best thing would be to fade into the sunset, but I would really like to fire her and let her know what I think. I know I have to do it maturely and politely even though the little kid in me would like to call her every name in the book. So what's the best way to do it - make an appointment and tell her I won't be back, write a letter or use the web message system. With either method I'll have to ask for my records. I'm sure it won't make any difference, but it might make me feel better to let her know what I think and to let her know how her attitude and behavior effected me. Any tips for firing your doctor are greatly appreciated. Thanks, Wendy

Hi, I just wanted to let everyone know how I made out on my first venture out of the house. Since I'm here typing, I survived LOL. Before we left home my son went out and cooled off the car and made sure it was stocked with water. Same when we left the funeral home. My daughter stayed home because she was coming down with something so I had the back seat to myself and stretched out. I had my pillow and blanket with me. At the funeral I sat down and everyone stopped and chatted with me. Everyone was surprised to see me there. While not big facebook posters, apparently my extended family has been following my saga so knew I was sick. My cousins were surprised to see me there. They didn't think I'd be able to come. They were completely understanding about not being able to come the next day. I'm so glad that I was able to go. There weren't many people there, so I"m glad we made it. I do wish I could have gone today but it would have been too much. I'm wiped out today. The hardest part was the awful storm we had on the way home. My husband and son wanted to stop for ice cream, good thing they did. As soon as they went in the sky turned black and opened up, the wind was so strong it was shaking the car, the trees were bending over and there was sky to ground lightening. I made the mistake of looking up only to see that we were parked under electric wires which were really swaying back and forth. I did not enjoy sitting in the car waiting for them. But, as quickly as the storm moved in, it moved out. It was strange because I didn't feel very well afterwards. Well thanks again for the tips. Wendy

Thanks for more welcomes! This is such a great place, I'm really glad to be here. Janet - I forget sometimes how lucky I am to have such a great family. Writing my intro helped to remind how special they are. Chaos - I actually had one doctor tell me I couldn't have two particular symptoms at the same time because it doesn't happen that way. His other patients don't do that. Oh, ok, sorry I'll try to be just like your other patients. Ugh. My family doctor loves me because I'm never boring LOL. Looneymom - I can't imagine seeing a child go through this. Thanks again everyone! Wendy