EarthMother Posted September 5, 2014 Report Share Posted September 5, 2014 Deep bow, warm embrace to all my old DINET friends. It feels like I have been away for a very long time and something inside me just so needed to check in and hug people who would understand. I'm missing the connection with those who understand what it means to live with a life limiting illness. I don't talk about it much ... other than in graceful poetic ways from my blog. But right now, it just feels so hard ... and so very "alone" in it. That this is the only place I know to come where I know there are people who understand deeply the pain.I make whatever peace I can with being housebound (the dysautnomia is hard and my nerves are shot ... you know how it goes with hyperpots.) And while I think I've "known" that my kids are all orthostatic intolerant ... my son (who dropped out of college last year due to illness) was seen by a specialist last month and scored 8 out of 9 on the beighton test for EDS. Each of my kids are classic EDS bendy .. all of them are also text book POTS (80 pulse at test 120+ standing) .. we've never done any of the formal tilt table stuff with them because they each manage well ... until last year when my son took worse. When the specialist found out I had formal dysautnomia diagnosis he told him some version of .. awe that's too bad, there's nothing we can do for that. Which is true in my case. My own PCP knows that all too well. Nonetheless, we'll try and find an EDS specialist for my son and see if there is anything different he can try .. but we move so slowly .. and you all know what a long road he has ahead. Brings tears to my eyes. Well gosh .. I so like it better when people who are hiatus come back with GOOD NEWS ... LOL. Sorry. I promise to be more perky down the line. Right now, I'm just circling the drain a bit. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 5, 2014 Report Share Posted September 5, 2014 Good to hear from you! Wish it was under different circumstances. I have EDS and POTS and MCAS and something we haven't seemed to identify yet that seems autoimmune-ish. I can relate to your post. If you haven't found it yet, there is a forum called Inspire at www.ednf.org which is the Ehlers Danlos National Foundation. There is a wealth of information on the site and there are some really knowledgeable people on the forum especially the moderators. Hang in there.... Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 5, 2014 Report Share Posted September 5, 2014 Welcome back, but so sorry things are difficult right now for you and your kids. I hope you can find a specialist who is helpful. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 5, 2014 Report Share Posted September 5, 2014 Hi EarthMother! Good to hear from you! Like Katybug said, you can gather more information now that may help your kids. I hope there is a specialist close by that can give better care than the one that told him there's nothing to be done. Quote Link to comment Share on other sites More sharing options...
Raisin Posted September 6, 2014 Report Share Posted September 6, 2014 I just thought I'd share that when I am feeling very very low and wanting to give up on finding the cause of my Dysautonomia, I think about my family and the family that hasn't even been born yet and that maybe, just maybe, what I am doing may provide some information, strength, hope to someone or someones on down the line. I feel that things are now beginning to become more clear to the medical profession re Dysautonomia in the research area and in general awareness and hopefully, in compassion. Hang on to the hope. I don't think it's a pipe dream that we will be seeing new medicines and treatments soon. I am sorry to hear that your son is not feeling well now either. I'm sure that opens a floodgate of emotions. You are certainly entitled to that. Hang in. And, you're right. You will find understanding here. We need to carry each other through the rough spots and try to throw out life rafts to one another sometimes. So, in my thoughts, know that I am throwing out a life raft to you today. I'm sure I will need one in the future too (who knows? It may be tomorrow! Lol ) . Quote Link to comment Share on other sites More sharing options...
EarthMother Posted September 6, 2014 Author Report Share Posted September 6, 2014 Deep bow, warm smile. Thank you all for your good thoughts and wonderful resource links. I am versed in so many things on my own healing journey but I never thought twice about EDS as the cause of my POTS because I don't have the classic markers. So I didn't do a lot of reading in that area until more recently. When we saw that each of my now adult children do score high in the classic ways it helped shed light on the origin of our symptoms. Indeed it was then possible to track it back in our family for the ones who have "fibromyaligia" or vascular heart conditions etc. And yes its very hard to watch my son wake up everyday feeling the aches and pains and "flu like" symptoms that I have known for most of my adult life. My eldest daughter seems to manage her POT symptoms through the "normal" life adjustments and my youngest daughter just started college this year and prefers not to think about it. Really who does? Seeing her Mom and brother so sick ... it has to frighten my girls to some extent. But I've always told them we don't really know why things get worse or better in some people at some times and there isn't any reason to believe either of them will end up like me. Then again, I told my son that too. *sigh* So for now we'll just keep on keeping on, I do hope he opts to join some of the support networks for EDS I think he'll feel a bit more control if he talks with other people his age and hear about their healing journey.Thank you again for the information and kind words ♥ Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 6, 2014 Report Share Posted September 6, 2014 Welcome back! Have missed your kind and thoughtful insights these past several years. Sorry to hear you have been brought back down in the trenches again. So hard seeing our kids struggling with health problems. As hard as it is to live with these issues ourselves, I'd much rather do that than watch my kids suffer. My 4 have had way more than their share of major health issues on their path to adulthood so I can relate. Did your son have an illness that triggered an uptick in his symptoms? I always wonder what it is that causes the genes that we've had our entire lives to suddenly switch on and become problematic. I think this whole arena of epigenetics and neuro-immune-endocrine diseases is going to be revolutionary when they finally start getting some serious research money being put toward it.Hang in there. Glad you're back. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted September 6, 2014 Author Report Share Posted September 6, 2014 I wonder about that too ... through the wax and wane of symptoms over the years and what appears to be a slow and steady decline over time, what are the triggers that turn the disorder into such a life limiting condition. I use to warn my kids about drinking and drugs ... could our young and stupid years contribute to a metabolic shift? I read somewhere that having an auto accident can shift the autonomic system especially if you are genetically predisposed. What about long term stress? Auto-immune comorbidity? Lots more questions than answers. And I really don't want either of my daughters walking on eggshells wondering what they should or shouldn't do. Ultimately all of us are walking on thin ice, in one form or another. So for now we give ourselves Grace and put on the ice skates as we glide onward in our healing journey. Quote Link to comment Share on other sites More sharing options...
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