WinterSown Posted July 18, 2018 Report Share Posted July 18, 2018 NO, no No NO! I'm not ready yet for six months! Three, please three. The EP looked at me and smiled so warmly I felt deeply cared for. I almost started to cry. He is the antithesis of everything bad we have all encountered. He diagnosed me over a year ago after I did NOT faint on the TTT, he asked then what makes it feel better. "I go lie down." And that was how I got diagnosed--a doctor who cared enough to listen. He's been slowly cutting down my meds as I get stronger and today I could have graduated to six months between visits. But I am not ready. Maybe physically but my head isn't there yet. "I love seeing you, Trudi, I will see you anytime ever." I got out to my car and I did start to cry as I have when I left some of my other doctors. But this time it was joy and not frustration. It took so long to find good doctors that are also good people. I love seeing him too. Now I am crying again. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 19, 2018 Report Share Posted July 19, 2018 I am happy for you!!! Baby steps can mean so much sometimes. It sounds like you are pretty stable with your medication now? Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 19, 2018 Author Report Share Posted July 19, 2018 He thinks so. I'm off many drugs and am down to two halves of carvedilol (25/2=12.5x2) and a half of lisinopril--5mg. I still have motility drugs but the BP drugs are a fraction of what I was on. I am better perfused because I walk and exercise. I try to eat electrolyte-rich foods with every meal. And, importantly, I think I am getting used to the sudden onset of symptoms--I deal with it better. I no longer freak over it. The last time I saw my neuro we talked about me reaching acceptance. Dysautonomia is a bad diagnosis and at 60 I have a lifetime of possible causes--we all chose not to pursue them and instead focus on reducing symptoms. I still love advocacy, reading and being creative. All this together got me better. It has been quite a journey but it's just beginning and it looks better now than a couple of years ago when I was still haywire with out of control symptoms. So, three months it is until I say six. Joy! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 19, 2018 Report Share Posted July 19, 2018 That sounds awesome that you are feeling so much better. I think acceptance is the hardest thing. But once you do it gets easier. I am only 32 and for me it was like a punch in the gut at first. But now it is more my body is broken, it reacts funny to things, and is weird. It is OK. I just had to change things up a bit. I am still searching for my underlying cause. For myself as well as my kids. My 15 year old has been showing symptoms for a while. But was able to manage without meds. I will have to push for his diagnosis soon though because it is getting worse. I am gonna worry about that after he gets back from vacation though. I think autonomic dysfunction symptoms are much less scary when you understand what is going on and learn the tips and tricks of helping to alleviate them. Or at least lessening them. Hope things keep getting better for you!! Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 19, 2018 Author Report Share Posted July 19, 2018 21 minutes ago, StayAtHomeMom said: I am only 32 and for me it was like a punch in the gut at first. But now it is more my body is broken, it reacts funny to things, and is weird. It is OK. I just had to change things up a bit. That is exactly how it is! I am so sorry to hear about your son; I hope his symptoms lessen soon. Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 19, 2018 Report Share Posted July 19, 2018 I am so happy to read your post. It is such a good feeling to be cared about and it can change everything. Similar thing happened to me many years ago and I cried happy tears, too! Sending you my best wishes. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 19, 2018 Author Report Share Posted July 19, 2018 40 minutes ago, songcanary said: I am so happy to read your post. It is such a good feeling to be cared about and it can change everything. Similar thing happened to me many years ago and I cried happy tears, too! Sending you my best wishes. I'm so glad you wrote that. Hope isn't something fake and getting better isn't impossible though it takes a lot of determination. I believe in healing. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 19, 2018 Report Share Posted July 19, 2018 2 hours ago, WinterSown said: That is exactly how it is! I am so sorry to hear about your son; I hope his symptoms lessen soon. I hope his is just from growing. He grows for 6 months and then stops for six months. When his symptoms started he grew 4 inches in 6 months. He is 5'10" as of a month ago but I suspect he is hitting a growth spurt again. It kills me when he laughs at my shortness and he gets something for me on the top shelf at stores (I am 5'4"). Or puts dishes away and forgets I am short and puts stuff I need on the top shelf. Lol Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 19, 2018 Report Share Posted July 19, 2018 I agree with @StayAtHomeMom acceptance and understanding of our condition makes life easier and it just puts everything back into perspective. I went through all of the stages of grief throughout this illness and it took me a long time to reach acceptance ( because I am very stubborn ). But now there is less anxiety, less frustration ( except for with doctors ) and less confusion ( again - except for doctors lol ). And instead of focusing on how bad things are I can relish small successes ( I played 37 seconds of badminton with my daughter yesterday and she was tickled pink! ) --- I am happy for you @WinterSown and I understand how you felt almost scared at first when he said 6 months. You do a wonderful job of taking care of yourself and are an encouragement to many! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 19, 2018 Report Share Posted July 19, 2018 Great that you are stabilizing and feeling better!! Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 19, 2018 Author Report Share Posted July 19, 2018 42 minutes ago, POTSGIRL123 said: Winter would you mind sharing the name of your doctor with us so we can know a great doctor....My doctor was in North Shore Long Island too..his name was Dr. Bogonese ....thanks I will PM you. 13 hours ago, StayAtHomeMom said: I hope his is just from growing. He grows for 6 months and then stops for six months. When his symptoms started he grew 4 inches in 6 months. He is 5'10" as of a month ago but I suspect he is hitting a growth spurt again. It kills me when he laughs at my shortness and he gets something for me on the top shelf at stores (I am 5'4"). Or puts dishes away and forgets I am short and puts stuff I need on the top shelf. Lol Seriously, you would be a giant among women in my family. At the supermarket I get the biggest smiles from people when I ask them to be tall for me. My brother went to a sleep away summer camp--he came home after six weeks and was six inches taller. His cuffs were up to his calves! My uncles also did this when they were young. Maybe ask the men in the family if any of them had similar growth spurts--it could be familial and nothing to worry about. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted July 19, 2018 Report Share Posted July 19, 2018 1 minute ago, WinterSown said: I will PM you. Seriously, you would be a giant among women in my family. At the supermarket I get the biggest smiles from people when I ask them to be tall for me. My brother went to a sleep away summer camp--he came home after six weeks and was six inches taller. His cuffs were up to his calves! My uncles also did this when they were young. Maybe ask the men in the family if any of them had similar growth spurts--it could be familial and nothing to worry about. My youngest brother is 6'. The other is 6'4". The taller one growth spurted a little in his young teenage years but mostly just steady. Honestly I feel like I blinked and missed my youngest's growth spurt. I think his was steady though too. I have to buy my oldest son 2 pant sizes up every time I buy him clothes. He is wearing a 12 1/2 shoe but I think they are getting too small again because he hates them and prefers his flip flops which are a 13/14. My son's biological father was adopted so not sure there. He himself is only 5'6". I envy his height sometimes... until he smacks himself in the face with a low lying tree branch while walking down the sidewalk. Lol Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 19, 2018 Author Report Share Posted July 19, 2018 We had bottled milk delivered to the door. Every week my Mom bought commercial-size boxes of dunker oatmeal cookies from Dugan's. We'd come home from school and I'd watch my brother and his friend put down a few quarts each with a whole case of cookies dunked and gone. He grew up strong and tall. Bro got cookies and milk, I had egg shakes. All of the girls had an egg-shake everyday. Milk, a packet of Instant Breakfast, and a whole egg--shell and all--went into the blender and whirrrr. Mom said she didn't want us turning into bent-over old ladies so that's why the egg-shell went in. I never had symptoms as a girl and I wonder if the calcium was very important for that--it's helpful with osmostic fluid transport in our cells. Maybe I should nibble on a cuttlebone, lol. Quote Link to comment Share on other sites More sharing options...
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