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jojochristine

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    Nature walks, mind-body practices, holistic health, languages, other cultures

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  1. I have an autoimmune disease as well as dysautonomia, so I don't get flu shots anymore. My holistic doctor said that taking NAC has proven more prevantative than taking flu shots and much safer, because flu shots will activate the immune system. So I take several caps of NAC each day. It also helps with estrogen detox and lupus pain, so I'm killing 3 birds with one stone.
  2. I'm sorry to hear how hard it has been. I know what it's like to be stuck inside, in bed, tired, and not able to work. Though things are far from perfect, I'd say I'm functioning at about 70% most of the time, which is amazing compared to being bed bound. I do not technically have POTS, but I have a bunch of dysautonomia symptoms, including anxiety/panic and fatigue. I now work from home for the same company I was working for before my illness. I try to work hard on the days I feel good to make up for the days I don't. Working from home is tough because you're alone, but it does give me a certain sense of purpose and joy to be able to do something I can enjoy and to make an income. (Otherwise we couldn't afford the medical bills!!) What has been most helpful for me on my journey has been prioritizing sleep over everything. Sleeping any time I feel tired. Also, getting basic exercise every day, which is usually a gentle walk or gentle yoga (I never thought I'd be doing yoga, but now it's one of the few options of movement I can do when it's hot outside). Trying to enjoy nature and making sure I only focus on beneficial relationships. My counselor always tells me to not feel guilty about focusing on doing things to heal my body... I've also changed the way I eat to almost all whole foods...no processed foods and make sure I eat in such a way that controls my blood sugar. All these things have made a slow but sure difference for me and now I find myself in a place where I'm definitely functional, though I do have a number of limitations. I want to add that my biggest source of encouragement medically speaking has been my functional medicine doctor. He is confident that my health can improve, and his confidence has really helped me.
  3. The other day I listened to a Phoenix Helix podcast, in which Eileen Laird interviews an integrative doctor about doctor/patient relationships. It turns out that the doctor being interviewed has struggled with dysautonomia for over 10 years! When I heard this, I reached out to her to ask for her advice. She took the time to reply, which was so kind of her. I wanted to ask if anyone has had experience with the advice she gave me (see below). Would love to hear about it! What I have found most helpful for my dysautonomia--and what I recommend to my patients: Mind-body practices like qigong the most important thing for any kind of nerve damage, whether a motor nerve from a stroke or the autonomic nervous system from dysautonomia, is to exercise the nerves so they rewire and remember how to function. These need to be done, ideally, on a daily basis, even if 5 min 3 times a day. Careful not to overdo, so it worsens the symptoms, but pushing yourself so that some mild symptoms are triggered. Find that incremental training zone for yourself. Qigong helped my chronic vertigo and lightheadedness tremendously. Cranial osteopathy-- this is different than standard osteopathy and also different than craniosacral work. If you have an osteopath trained in cranial osteopathy in your area, it may be a great therapy to try. Painless, requires nothing of you except $ and showing up for appts. They are able to manipulate the central nervous system through mobilizing cerebrospinal fluid. If you don't have such an osteopath, a craniosacral therapist may be a great second option (they are typically physical therapists or massage therapists who get additional training). Get screened for chronic infections like stealth Lyme or other tick borne infections, which can wreak havoc on the autonomic nervous system. For years, I was a skeptic about such infections. I was also reluctant to go down that rabbit hole, so long as I was healing. But recently, I've had some health challenges that knocked me down, and I relented. My integrative doc screened me for a lot of infections and many were positive. Again, it doesn't always mean that everyone with positive tests needs treatment. It depends on how resilient that person's immune and nervous and hormone systems are keeping things in balance (or, in my case, not keeping things in balance). So I'm currently getting treated for those, and beginning to feel a deeper healing than I've had before-- and you might recall from my podcast that insomnia was still a big issue for me...my sleep has gotten significantly better!
  4. One of my main concerns is dealing with high anxiety, which I have because of dysautonomia. I'm already on an antidepressant to help keep me from panic attacks, but being in plane will only increase that anxiety.
  5. I've wondered about flying as well. Because of dysautonomia, I have breathing and anxiety issues, and am having trouble thinking of flying at this point. Any tips?
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