Hello potential friends, old timers, newbies, and curious people!
About me, the short version. I took Larium (mefloquine for anti-malaria), Accutane, and Propecia all in the late 1990s. Last year I finally got Social Security Disability after being cognitively unable to work for years.
SO… what keeps me going? Why am I still here?! How do I do it? What can you do to help yourself with your syndrome? Here are my suggestions, which work for me:
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Create a spirituality or a mindset/belief system that has a healthy dose of questioning everything, everything you have been taught, but also focuses on the present moment, the beauty of our world and life in it. We are alive, we are given the gift to experience it.
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Do something for yourself each day ideally, even something small, that makes you feel good or relaxed or content. Something that builds up you or others. Avoid destructive or negative actions, habits, news channels, social media posts, etc.
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Each moment, or as often as it happens, stop and be self aware: realize the thought or concept that is going through your mind. Is it a negative one? Is it making you feel sad or upset or angry or jealous? Recognize that thought for what it is—just a thought, existing nowhere in the universe except your own mind in that moment—and let it go. You can and will choose to focus on or think about something else, in that moment. See numbers 1 and 2 above.
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Cultivate, as soon as you can, in whatever way you can, at least 1 or 2 people in the universe who can and will listen to you, understand at least part of what you have been through, and decide to support you. You can avoid tons of Facebook or internet “friends” who exist only in a screen, especially if the interaction is superficial or triggering. I am talking about a real-live person, friend, doctor, therapist, family member, fellow sufferer, pet/animal companion even. IOW, being and staying connected to at least another human being keeps you human and okay.
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Keep notes in your phone, or journal, or notebook, that record something or someone you enjoyed or feel good about. See numbers 2 and 4 above. Do this notation as often as you want, every day, as long as you time. Use your person(s) in number 4 above to share and realize such occasions of positivity in daily life. Remember that the item can be “small” but that doesn’t matter. Just keep writing down everything that adds to your life in any way. This is especially good for those of us who have memory problems>
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If you need to, do have a doctor and or therapist and or prescriptions that help you get healthier and better–keeping in mind the healthy skepticism in number 1 above before you (a) start any new drug, and (b) let a heath professional make assumptions about you or try to take over your health with his/her opinion. Some of us do need to take medications for various conditions, and if a brief course of a safe medication for example helps you to do numbers 1 through 5 above, consider it. Be active in your own health; remember that since a little pill gave us a lot of problems, we can be justifiably suspicious of a little pill taking care of everything like magic. Continue your research before you make decisions.
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If you have time and or money and the energy, donate money to the PFS Foundation or to researchers, volunteer and help others who have disabilities and chronic conditions, email and send letters to congressmembers and senators and drug companies and health agencies. Or use your limited time and money and energy to find a good healthcare provider, or apply with help for disability benefits, or enroll in research studies. If you are encountering skeptical or difficult healthcare providers, get ahead of them by knowing, printing, and showing them the scientific research about finasteride and neurosteroids.
I do all these things; all of them have helped me not only survive but thrive in little ways all the time. I am not perfect at any of these and that is key: I do what I can, as best as I can.
Please feel free to message me for a dose of understanding, encouragement, and compassion.