Biggest challenges you face in your current journey?
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
Navigating life's journey involves facing challenges and seeking support. Many find understanding and guidance in communities, therapy and trusted relationships. Support that listens and empathizes often makes the biggest difference.
Thank you for highlighting the importance of emotional support via patient support communities, therapy and trusted relationships. As you mention, needs for understanding and guidance along our healthcare journeys can also be met through these avenues. Additionally, your initial words regarding 'facing our challenges' and 'seeking support' highlighted for me my need to keep myself free of shame, to be able to confidently continue to seek out empathic support. I've definitely found myself on a ongoing journey of self-compassion.
Thanks, again, Benjamin. Hope you're having a good day!
Gina (Team Member)
I have Homocystinuria. My medication has been my biggest hurdle since last year. My insurance has raised the price so much that I can’t afford it anymore. I have to get it through Facebook groups.
I used to get a grant through health well but the company that was funding them quit because we were grouped with another condition that had a lot of treatments. I'm so sorry to hear that.
Healthwell was were my initial grant came from. I am now currently getting help through The Assistance Fund.
I sure hope there will be another avenue for copay assistance that will open up for you...the only other thing that I can think of is to ask your local pharmacist to see if they might know of other options? Also, maybe even doctors' offices that treat your illness might be a potential resource for info?Hugs,
Gina (Team Member)
Trying to get information to the right people who would listen and believe my pain.
That's true, finding supportive listeners who believe in your experience can make a big difference. 
, is your healthcare team receptive to helping you investigate the causes? - Warmly, Donna (Team Member)
Being taken seriously
Oh yes they have all the research that I've provided plus all the links to the information that I could find. And it's okay for other people to have POTS but as a daughter/sister, I'm supposed to either "Adapt and Overcome" or push myself to the brink to meet expectations. Adapt and overcome looks different for everyone... I got out of bed without help this morning. That's adapting and overcoming. Other days it's I did 5 sets of stairs throughout the day... (my form of fitness) Pushing to the brink to meet expectations? Frankly it's amazing that more of us haven't had serious heart disease due to stress. , ugh - yes it is easy for people to view "adapt and overcome" through their own lenses, without respect for the lenses others must use. I completely understand how it is changeable for you. And I'm glad you had a successful start to your day. The only expectations we should worry about meeting are our own (and we have to safeguard about not being too demanding of ourselves!). - Warmly, Donna (Team member)
