selfadvocacy

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    17 years until a diagnosis

    Optic neuritis, extreme nerve sensitivity, numbness, wandering eye, numb butt (really) and all kinds of doctors and testing – Spencer is such an authentic voice talking about his own zigzag journey with MS. www.youtube.com/watch

    Every #myMSstory is powerful. What's yours?

    #multiplesclerosis #selfadvocacy #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Disability #Support

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    "This experience of being dismissed, or having symptoms confused for another illness, isn’t uncommon in MS...

    ... making it even more important to be your own best advocate."

    Bumping Jenna Green's column on The Mighty called How I Stepped up to the Plate As the Manager of My Health:

    How I Stepped Up to the Plate as the Manager of My Health

    Jenna says, Don’t be afraid to advocate for yourself and your wishes to find a treatment plan that fits with your life. You call the shots, you manage the team of healthcare professionals that respects and serves you best. She tried several neurologists before deciding on the bestvfor her. She says she gains confidence for her appointments by staying informed with trusted sources like MS Society and MS Focus.

    I wish I'd read Jenna when I was newly diagnosed. It took me a lot of years.

    #multiplesclerosis #selfadvocacy #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Caregiving #Disability #Support

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    Self-Advocacy ☝🏼

    Putting your own needs first can feel “wrong” when the world has taught you that your way of thinking is “odd” and not just “different”. As such, some NDs may have trouble setting boundaries, while ensuring that our needs are met usually takes a back seat.

    I’m guilty of this, for sure! 😬

    #selfadvocacy #boundaries #nds #workinprogress #limits #Selfcare #neurodivergent #Support

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    Mighty Virtual Events: Wednesday 5/19/21!

    For World IBD Day, listen to this panel of IBD experts and advocates at 11am PT / 2pm ET: bit.ly/3bnwcJg

    After, head over to an interactive webinar that teaches you new tools for self-advocacy at 2pm PT / 5pm ET: bit.ly/3eKiAda

    End the night with our weekly support group for spoonies starting at 4:30pm PT / 7:30pm ET: bit.ly/3u2MVc5

    #MightyEvents #MentalHealth #WorldIBDDay #InflammatoryBowelDiseaseIBD #UlcerativeColitis #CrohnsDisease #ChronicIllness #selfadvocacy #Spoonie

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    Another lesson I've learned from disability part 2.

    #Autism #Disability #InvisibleDisability #Dependence #Independence #Neurodiversity #selfadvocacy #Advocacy (slight repeat to maintain intelligibility) Being able to rest has led to some miraculous things, including an underlying peace of mind and satisfaction with my life I could never have imagined growing up, and that I'm told most people never find in their endless search for "more". (Now if I could just get back there for more than minutes at a time!! But that will come.) Being "dependent", has led me to develop a previously unimagined independence, and as I said, sense of well being, that the rest of my (supposedly nondisabled) family can only dream of! It's still pretty amazing to be compared favourably to my siblings! And it is because I never stopped fighting and striving, and demanding the support services I needed to make my life work out. (And the supportive community to support all this.) Until I needed a rest and a break from engaging with the world. And now, maybe, I'm willing to engage with it again. Maybe. Still debating that one.
    Fighting all these invisible disabilities, while at the same time being obviously intelligent, and appearing to know what the hell I'm doing in and with the world has been hard, and will continue to be, especially as I get reacquainted with some of the ones that faded into the background for a while while I was essentially hibernating from involvement in the world, and which are now reemerging. But slowly, society is starting to "catch up" to the reality that diversity is a natural fact of life, and that invisible disabilities exist, and not all disabilities are visible, or even prexent consistently. Also, that, in reality, pretending that life doesn't thow everybody major challenges, at some point or another (or several), or that everybody has the same skills, abilities, and resources, hurts everybody.we need to recognize that life is hard for everybody. Being human is hard. Ignoring this basic fact makes everything even harder, for no good reason. It gives me hope that someday we'll end up with a more egalitarian society!!

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    Another lesson I've learned from disability part 1.

    #Autism #InvisibleDisability #Disability #Advocacy #selfadvocacy #Dependence #Independence #Neurodiversity Just finished (I hope) writing the letter that will hopefully convince the government to fund my continued professional relationship with my psychologist/autism specialist. I'm pretty proud of it. I realized several times while writing it that there have been benefits to having no money/not being independant in that sense, and having to be part of "the system". It means I've gotten proficient at writing letters of this sort, and convincing organizations to provide me with the money to do stuff I otherwise wouldn't be able to. Whether it is for assistive technology (over and over again), an updated computer so I can do my term papers and email etc. or living expenses in extraordinary circumstances (i.e. when I was less than a full time student, even for a disabled student, but only had one class left to complete my degree, and so would've ordinarily "falien through the cracks" between student loans and social services). Or whether it was a scholarship, or conference attendence funding (the latter was never successful. The former sometimes was). I got a lot of practice, and a lot of support from people who were on my side, and wanted to help. (And those few experiences to the contrary!). Combined with all that practice writing term papers, and learning how to write convincing thesis statements, and craft an argument...
    Not only has this all given me the ability to craft these letters, but it's given me the experience to see that being open about my needs, and my differences has been the best thing for me. Many people would tell me I need to be more independent, or that being "part of the system" is bad, and should be avoided, etc. And I should do as much for myself as I can, (or, more accurately, as they can!), but all hiding my difficulties and differences ever got me was a whole lot of heartache and pain and frustration. And probably no small amount of rage. Being open about who I am, and what my limitations are has opened a whole new world of opportunities for me. It has led to people stopping blaming me (as much) for my difficulties, and recognizing such things as disabilities, rather than as attitude, or deliberate obstructive behaviour on my part. It has led me to be able to explore my actual abilities once many of the burdens of my disabilities were removed.
    Allowing myself to even have limitations, even if they are much different, and much greater than other people's has led to all sorts of possibilities I never would've discovered if I had been crushed under all those neurotypical and nondisabled expectations and demands!! It has even led to some abilities that others don't have! Being able to rest has led to some miraculous things, including an underlying peace of mind and satisfaction with my life I could never have imagined growing up, and that I'm told most people never find in their endless search for "more".

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    The Psych Med Song, for my one-time medical provider

    For the record: no, I don't actually think I know more than an NP. And yes I believe that medications can and do help people and that there is NO SHAME AT ALL in taking your meds. I believe that there are medications that work for different people, with different results. I do know more about my medical history and experience with medications and their efficacy for my own self though and this is a list of meds I have been on that did NOT work for me, and I really dont want to re-start the trial and error "lets see how THIS makes you feel" during a pandemic while I'm more level than usual.
    #Medication #selfadvocacy #AnxietyDisorders

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    Derrek’s Story for Networking and Meeting People #AutismEmployment

    I loved working with Derrek Freitas and making his new YouTube video for the #LetsWorkCA project. Derrek helped with the Let’s Work Networking Guide and created his own video. Check it out (go to youtu.be/jGfDEIhSZ-U to ) and let Derrek know how awesome it is by leaving him a comment. #Autism #Storytelling #selfadvocacy #California #Employment

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    What Are You Fighting For? #CheckInWithMe 💪💛

    Most people would think that when we fight for treatment, support and understanding; they might think that fight is for ourselves. At times it is, but my fight is no longer for me.

    I never fought for treatment and diagnosis; that was my parents. If I'm truly honest, I never thought that was an option. I just knew I was in a downward spiral of hating myself and hurting those around me. I was a child; I didn't know better.

    I used to fight to prevent kids from being in the positions I was in as a child. After a lot of therapy I understand that isn't in my control; and neither were the things that happened to me.

    When I relapsed badly at nineteen; I fought for treatment I knew I deserved (and desperately needed). I fought that fight for the first time and it's not an exaggeration when I say it almost cost me my life. Rounding up professionals, waiting lists then the knock backs and at times doing their jobs was the most exhausting; more exhausting than my relapse.. which is a lot. My safety plans, treatment plans and "support" were not my savior.

    It's changed my view on life and circumstances massively. Especially in terms on how I keep myself safe next time; because they haven't each other time.

    At this point I understood the true weight of what my parents had to live through. They fought for over three years, having me taken from them, being called unfit parents and the consistent neglect of any support other than the police to keep me safe at the darkest of times. I can't imagine the pain they must of been in watching me get worse; with nobody to help but one another.

    My fight for treatment isn't about me anymore. Of course I want to know I'm safe guarded appropriately and working on having a supportive community team. However, what means most to me; is that there is faith and trust, belief that when my parents aren't here I will be safe. I try my best to unburden them as much as I can, but the one burden we share universally is one I cannot fix. Reforms and systematic change is what will keep me safe; allow me to have a net to fall into if need be.

    My fight is for reforms that means my family aren't the only ones to pick up the pieces when they inevitably fall. So they don't enter their old age terrified that if they aren't at their best my life could be lost. We don't leave cancer patients with no support and hope for the best. I'm fighting for a life where my illness is protected by the appropriate people. I'm fighting for my illness to be my own and truly self managed, not lumped with those who are willing or love me enough to carry that weight.

    Fighting for my parents to be my parents again. Fighting for my needs to be treated medically as needs; not dismissed. 🌼

    #BipolarDisorder #EatingDisorders #selfadvocacy #Recovery

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    Self-Advocacy & a Naturopathic/PCP duo

    I advocated on my own behalf to have bloodwork done (anemia and other panels) when I visited with my naturopath last week. Turns out I need blood infusions. I know that i've been anemic for at least 2 years. I have the complexion of Wednesday Addams and eye bags like Uncle Fester.

    This is one example of self-advocacy when it comes to my plethora of mental/physical health concerns and/or issues. A few years ago, I came to the harsh realization that I needed to be the one to ask for what I needed - and to do my part in researching scholarly and medical articles regarding my diagnosis, symptoms and treatment options.

    I have a primary care physician as well as a naturopathic doctor. I have seen my PCP for over 10 years and my naturopath for 2 months. Having this Dr.- duo team in my life has allowed for new and second opinions. If you have never met with a naturopathic provider, you're missing out. (Warning - rant) Example - Instead of making an appointment to see my PCP in order to get a referral from said PCP to see a dietician, waiting 2 months just to pay extra to see the specialist, then wait in the lobby for 30 minutes for your actual appointment -- all to have them reassure you that your food restrictions/sensitivities/intolerances are shitty, to give you a meal plan for one week, devalues the fact that money plays a part in the ability to afford healthy and balanced foods IN ORDER TO MAINTAIN A HEALTHY DIET, and says "call the office if you want to come back in a month", with no further instructions -- I have had the pleasure of seeing a wonderful & holistic naturopath who has offered many meal substitutions, natural remedies/supplements and possible tests in just two appointments (did I mention I can see this Dr. weekly?! - all thanks to state insurance at present, however). I'm excited to try cupping and dry needling next week to address my cervical spondylosis pain and lymphatic facial massage for migraines (some covered my insurance, some at low cost).

    Anywho, the fact that you may have/need to advocate for yourself can be frustrating. I have found a system that is working well for me at this time and would encourage anyone to seek out naturopathic medicine if it is available to you. In my experience thus far, I have not had terrible side effects from suggested medications or herbal therapies like I do when doctors prescribe random medicines that they think might work, but side effects are ALWAYS a huge issue.

    #Naturopathic #Doctors #selfadvocacy #Advocacy #MentalHealth #ChronicIllness #nutrition