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

Thanks for the welcomes! Tara - I'm in Kendall Park, NJ. I'm very lucky because my family doctor really stays on top of things. He's great because if he doesn't know something, he'll find out. He also listens and takes my opinions seriously. He also refers to specialists who are very much like him. Of course I've still had my fair share of morons along the way. Margiebee - My little shadow is a bichon yorkie mix. It took me awhile to realize that he was telling me something was wrong. At first I was thinking what is wrong with this dog, he's always acting weird and wanting attention when I'm not feeling well. Then it clicked, he was telling me to do something. He's also great company. All my life I've had big dogs and never thought I'd have a small dog so when we adopted him I wasn't sure what it would be like, but he stole my heart. Corina - Thanks for the welcome. Wendy

Hi Jackie and Cupcakemom - Thanks for the advice. I'm trying not to get overwhelmed by all of this. I'm working up to washing my hair. I've already decided to wear slacks so I don't have to shave me legs lol. Hair, legs and going out all in one day might push me over the edge. I'll let you know how I make out. Thanks again, Wendy

I haven't really been out of the house since I got sick and got my diagnosis. The only times I've been out have been for doctor's appointments and tests. All of those "excursions" have worn me out. I have to go out tomorrow and I'm scared to death. Tomorrow evening I have to go to a viewing. My mom's cousin's wife died. (I won't try to describe the relationship to me because once you add in the second cousin or the once removed stuff I get very confused.) My mom's cousin passed away three years ago. We were always close and close to their kids. The kids are 15 and 20 years older than me and my cousin was 90. Not going is not an option. Anyway, I'm very nervous about going. The funeral home is an hour away. We'll be there for awhile. I'll feel weird just sitting and not walking around mingling. I'm worried that even just sitting up straight for two hours will be tough. At home I always have me feet up and I'm not absolutely straight and I always have a water bottle. I also feel really bad about not going to the funeral the following day. My husband thinks it would be too much for me. An hour to the funeral home. The funeral. Then an hour to the cemetary. Standing in the heat at the cemetary and then an hour to the dinner. I think he's right especially because I'm sure tomorrow will wipe me out particularly since it's in the evening. Any tips on what I should do for me first time out? Should I explain to people that there's something wrong so they don't think I'm weird for just sitting? Should I explain why I can't go the next day? Part of me wants to explain but I also don't want to be whining about myself at a viewing. Any tips on what I should bring for the car ride? What I should bring for the actual viewing? How I should keep from worrying myself into a state over my first time out? Thanks in advance for any advice. Wendy

I'm with both of you. I'm ready for them to stop!!! I'd like to just roll of in a couple of blankets and go to bed but I have to wait. Boo! I took my midodrine late this afternoon so I can't lay down yet. I'm not alone in my suffering, Tuffy is freaking out. They poor thing is on my lap shuddering so hard I feel like I'm on one of those old vibrating beds. He's a tiny little guy but boy can he shake. I think his heart is beating faster than mine and that's saying something. LOL. I just hope tonight will be the end of it. Wendy

Hi, my name is Wendy. I've just recently been diagnosed with Autonomic Dysfunction which they believe is a comibination of Orthostatic Intolerance and POTS. While I just started getting very sick about three months ago, looking back I'm sure I've had it much longer. It explains a lot of the strange things I've experienced. In addition to Autonomic Dysfunction, I also have RSD which I've had for 15 years. What fun! I'm 50 years old and I have a fantastic husband and two great kids and an a great little dog. My kids are 22 and almost 21, a daughter and a son. My daughter just received her bacherlor's degree in education and history and is doing an internship this summer. My son is studying communications/broadcasting. His job for the summer is taking care of me while his dad is at work. My son is great. He has a number of health problems himself - all invisible and not all easily diagnosed - so he gets it. Even the dog is great. No one believed me until they saw if for themselves, but when my BP starts crashing he knows before I do and starts whining and hitting me with his paw. When I've actually passed out, he sits on my chest and licks my face. My interests before getting sick were traveling, in particular cruising, quilting, reading, knitting and cooking. I also like camping and being outdoors. Last year my husband and I bought a little cabin in the camp community where we've been renting for the last few years. It was a wreck so this summer we were going to rebuild it. So, DH is rebuilding it and it will be ready for the fall. It will be nice to be up there and see all the leaves change. I also work part time from home as a travel agent. Right now, I'm not sure how much I'll be able to do. This is all so new and we're still not sure we have all the meds right. Have to take it one day at a time and see what I can and can't do. The last few months have been a roller coaster. Getting a diagnosis was frustrating. I think I used every ounce of strenth I had on some days just keeping myself from punching some of my doctors. I can't believe how obnoxious some of them were. Now that I know what's wrong and how my body is working, I understand why I had so many problems with the doctors. The symptoms are so elusive and unless you see them yourself they sound bizarre. Some docs are so quick to lable things anxiety especially if the patient is female. So glad to have a diagnosis now. Well, I just wanted to say hello. I'm looking forward to getting to know all of you and learning to adjust to this interesting new condition. Wendy