WendyB Posted July 7, 2013 Report Share Posted July 7, 2013 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 Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted July 7, 2013 Report Share Posted July 7, 2013 Hi there Wendy!My name is Tara, dx (somewhat with POTS). Still waiting to see specialist. Sounds like you were fortunate and have adoctore that knows about invisible illnesses. Where are you located? Quote Link to comment Share on other sites More sharing options...
margiebee Posted July 7, 2013 Report Share Posted July 7, 2013 Hi! Sounds like you are on the right track at least. I've been recently diagnosed after having this for a really long time as well.Also, so funny you should mention your dog, mine does the same thing! I've heard there are specially trained service dogs who do this, but mine seems to do it naturally. And since he is so large (150 pounds) he is actually able to stand next to me and help me walk if I need it. He's a Saint Bernard so he has a natural instinct to "shadow" his owner. So funny! Quote Link to comment Share on other sites More sharing options...
corina Posted July 7, 2013 Report Share Posted July 7, 2013 Hi Wendy, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
WendyB Posted July 7, 2013 Author Report Share Posted July 7, 2013 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 Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted July 8, 2013 Report Share Posted July 8, 2013 Hi Wendy and welcome to this forum. I'm so glad you found it. You will find this a very supportive, informative and encouraging environment. Thank you for sharing your story. I know it can be such a long and frustrating journey trying to get the correct diagnosis and treatment. I'm all about being proactive so continuing on in your quest for information and knowledge in how to best manage your symptoms and improve your functionality is so important. That's great that you have such strong family support. I do as well and am so thankful for it. I hope you continue to find more answers and the help you need. Janet Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 8, 2013 Report Share Posted July 8, 2013 Hi Wendy! Welcome! Your story sounds very familiar, especially the part about wanting to punch some doctors, unfortunately. I think part of the problem is that we have so many symptoms that overlap so many different systems that no one doctor really knows what to do with us, especially given how our current medical system wants to only address one part at a time. So much easier for them to just label us "anxious" or "depressed" and dismiss us rather than having to actually think and find answers to something that doesn't fit their nice little check-off boxes.Having a diagnosis is a huge relief so at least you can put a name to it and have some credibility with the docs you see now. Glad you found the forum and hope you can find some support and answers here. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 8, 2013 Report Share Posted July 8, 2013 Hi Wendy,POTS can be a roller coaster. Glad you have found a doctor that will help you through it. I am a mom with a 13 year son that was diagnosed with POTS when he was 11. It's been a long struggle so far but it sounds like you've been there too. It's also great to have family members that understand also. Keep posting and asking questions. Quote Link to comment Share on other sites More sharing options...
WendyB Posted July 8, 2013 Author Report Share Posted July 8, 2013 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 Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted July 9, 2013 Report Share Posted July 9, 2013 Welcome! Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 10, 2013 Report Share Posted July 10, 2013 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. What else can you say to that level of lack of understanding, except YOU'RE FIRED!!! LOL Had a doc tell me about a patient who fired him because he refused to give her a referral to have a toe amputated so she could fit into high heeled shoes better. And they want to tell me I'M crazy when all I'm trying to do is get my life back so I can be functional again??? Ugh! Quote Link to comment Share on other sites More sharing options...
WendyB Posted July 10, 2013 Author Report Share Posted July 10, 2013 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! Quote Link to comment Share on other sites More sharing options...
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