I am inspired by your words and your presence in my life. Being your own advocate, "writing anyway", and feeling such gratitude in the face of such life-altering circumstances is full of Spirit Light. Thank you
You inspire me, Jacque, another member of the MS club. The light you bring into our writing community is a true gift. Thank you for sharing this part of your story.
…and Wendy, you are an inspiration to me. You too, always go out of your way to be kind and encouraging. You were the first person who was really nice and welcoming to me here, even though I think we joined at the same time. I am grateful to know you and I had no idea the health challenges that you have faced. Always sending healing love to you.
Dear Jacque, like others all I can say is thank you for being so honest. As another chronic illness sufferer, I am sure I am not facing anything like your struggle but I can still relate. How can we explain that our “tired” is so bone numbingly deep, when everyone seems to think we just had one poor night of sleep? I am so sorry your first neurologist mistreated you and so glad the second one did not. I am grateful for the medication that is working better. And I am so glad you write anyway. Thank you for sharing.
What a powerful post, Jacque. Thank you for sharing your journey with such honesty and grace. For those of us without MS, you’ve given us a deeper understanding of the complex and often frustrating path to diagnosis and treatment.
Sadly, your experience mirrors what many patients—especially women—face here in the U.S. Too often, doctors (and insurance companies) make assumptions or cling to a “God complex” that discourages second opinions.
Your story is an important reminder that we must all be proactive in advocating for ourselves and our loved ones, ensuring we receive the care and answers we deserve.
Thank you, Karen. It is SO difficult to advocate for ourselves when we are sick and exhausted. I have wonderful family support. Sadly, so many others do not. I was LUCKY to be diagnosed so quickly (in less than a year). I hear stories of so many others who struggle, while ill, for years and years. All of that lost time can translate into accumulated disability from lack of treatment. It is sad. The thing that has improved most for those of us with MS is that there are now NUMEROUS disease-modifying therapies available now. There were only 3 when I was diagnosed, and that was a 3XHUGE improvement of the nothing that was available before that. So…I remain grateful.
I’m so glad you had the perseverance to keep fighting to find answers. What a difficult world it is when a nurse practitioner can’t encourage you to look elsewhere for help, and that shrug from a doctor..ugh! Just devastating. I’m so thankful you eventually found the right care, and even more grateful that your journey is helping others find theirs. Thank you for sharing your story. You are an amazing woman and such an important part of our writing community.
Jacque, you have a lot of support for this post. It is honest, vulnerable, and yet it embodies hope. Thank you. It is one of my favorites that you have written, probably because I relate to so much of what you wrote: the years without a diagnosis, and “lost years” with my family and friends, the comments from doctors that it is all in my head, the subtle and not so subtle shaming from those that don’t understand, the people (even friends) who think Addison’s disease just makes me tired. (It indeed does that, too), but, no it is a potentially life threatening endocrine disorder that I have to manage carefully otherwise I will end up in the hospital.
Unfortunately there has not been much progress in the U.S. since cortisone was discovered to treat it. I am glad that there are other DMT for MS that make your life much better. That helps. Yet, I am grateful that I have a semblance of my life back, without cortisone I wouldn’t survive. Definitely I am not the peak of my performance, but good enough as long as I pay attention to my body and don’t push myself beyond my limits. Sometimes my limits sneak up on me though.
You are doing amazingly well with what life has given you, and that is the best we can do to create a rich and full life. Congratulations! Thanks for the inspiration. Let’s keep on Writing!
Wendy. It is 1 am and this is the first time I have seen Jacque’s post… and then Wendy Carr’s and now yours. All three of you have always seemed so completely able to do anything and make a point of going out of your way to inspire others. Thank you for sharing and I’m sending healing thoughts always. 💙
Thank you for sharing your journey. I am in tears. I am so happy you have such strong, loving support. You are such a fierce advocate for yourself and for everyone else and your strength shines through.
Jacque. It is 1:10 am. I am just reading this now. I had no idea because I see, every single day, a woman who goes out of her way to purposefully inspire others and make everyone around you feel good about themselves. I am so sorry that you were misdiagnosed for so long and I do know that is common. We must always advocate for ourselves, almost be our own drs and saviors. You are quite amazing. You always seem ready for anything and everything. I’m sending healing thoughts always and thank you!
Jacque, your enthusiasm for life is out there in the words you write and in the ways you interact with members of A Writing Room. You’re an inspiration to keep going regardless of the challenges.
So many great messages here on hope, being our own advocate, and accepting help. Thanks for sharing your journey.
Thank you, Tony. I appreciate your encouragement. Happy writing!
I am inspired by your words and your presence in my life. Being your own advocate, "writing anyway", and feeling such gratitude in the face of such life-altering circumstances is full of Spirit Light. Thank you
Thank you, Nancy. Your words of affirmation and encouragement lift me up. So happy that we are in Community together. 💕
You inspire me, Jacque, another member of the MS club. The light you bring into our writing community is a true gift. Thank you for sharing this part of your story.
Thank you, Wendy. I know that you understand. Sorry we are in the MS club. NOT sorry that we are in the writing club! That is pure joy for me. 💕
…and Wendy, you are an inspiration to me. You too, always go out of your way to be kind and encouraging. You were the first person who was really nice and welcoming to me here, even though I think we joined at the same time. I am grateful to know you and I had no idea the health challenges that you have faced. Always sending healing love to you.
💙✨💙
I'm so glad you told your story. So glad you share yourself with us, your cohort. Much love sent your way.
Thank you, Catherine. Your kind support means so much to me. Hugs & hugs.
Thank you for sharing your story! So helpful and inspiring. I'm glad you advocated for yourself. Needed this message today.
Thank you, Katie. I love that we can encourage and inspire each other through telling our stories. Take good care.
Dear Jacque, like others all I can say is thank you for being so honest. As another chronic illness sufferer, I am sure I am not facing anything like your struggle but I can still relate. How can we explain that our “tired” is so bone numbingly deep, when everyone seems to think we just had one poor night of sleep? I am so sorry your first neurologist mistreated you and so glad the second one did not. I am grateful for the medication that is working better. And I am so glad you write anyway. Thank you for sharing.
What a powerful post, Jacque. Thank you for sharing your journey with such honesty and grace. For those of us without MS, you’ve given us a deeper understanding of the complex and often frustrating path to diagnosis and treatment.
Sadly, your experience mirrors what many patients—especially women—face here in the U.S. Too often, doctors (and insurance companies) make assumptions or cling to a “God complex” that discourages second opinions.
Your story is an important reminder that we must all be proactive in advocating for ourselves and our loved ones, ensuring we receive the care and answers we deserve.
Thank you, Karen. It is SO difficult to advocate for ourselves when we are sick and exhausted. I have wonderful family support. Sadly, so many others do not. I was LUCKY to be diagnosed so quickly (in less than a year). I hear stories of so many others who struggle, while ill, for years and years. All of that lost time can translate into accumulated disability from lack of treatment. It is sad. The thing that has improved most for those of us with MS is that there are now NUMEROUS disease-modifying therapies available now. There were only 3 when I was diagnosed, and that was a 3XHUGE improvement of the nothing that was available before that. So…I remain grateful.
I’m so glad you had the perseverance to keep fighting to find answers. What a difficult world it is when a nurse practitioner can’t encourage you to look elsewhere for help, and that shrug from a doctor..ugh! Just devastating. I’m so thankful you eventually found the right care, and even more grateful that your journey is helping others find theirs. Thank you for sharing your story. You are an amazing woman and such an important part of our writing community.
Jacque, you have a lot of support for this post. It is honest, vulnerable, and yet it embodies hope. Thank you. It is one of my favorites that you have written, probably because I relate to so much of what you wrote: the years without a diagnosis, and “lost years” with my family and friends, the comments from doctors that it is all in my head, the subtle and not so subtle shaming from those that don’t understand, the people (even friends) who think Addison’s disease just makes me tired. (It indeed does that, too), but, no it is a potentially life threatening endocrine disorder that I have to manage carefully otherwise I will end up in the hospital.
Unfortunately there has not been much progress in the U.S. since cortisone was discovered to treat it. I am glad that there are other DMT for MS that make your life much better. That helps. Yet, I am grateful that I have a semblance of my life back, without cortisone I wouldn’t survive. Definitely I am not the peak of my performance, but good enough as long as I pay attention to my body and don’t push myself beyond my limits. Sometimes my limits sneak up on me though.
You are doing amazingly well with what life has given you, and that is the best we can do to create a rich and full life. Congratulations! Thanks for the inspiration. Let’s keep on Writing!
Wendy. It is 1 am and this is the first time I have seen Jacque’s post… and then Wendy Carr’s and now yours. All three of you have always seemed so completely able to do anything and make a point of going out of your way to inspire others. Thank you for sharing and I’m sending healing thoughts always. 💙
Thank you Ann. You are always so full of love that you give without hesitation. I appreciate you.
Thank you for sharing your journey. I am in tears. I am so happy you have such strong, loving support. You are such a fierce advocate for yourself and for everyone else and your strength shines through.
Jacque. It is 1:10 am. I am just reading this now. I had no idea because I see, every single day, a woman who goes out of her way to purposefully inspire others and make everyone around you feel good about themselves. I am so sorry that you were misdiagnosed for so long and I do know that is common. We must always advocate for ourselves, almost be our own drs and saviors. You are quite amazing. You always seem ready for anything and everything. I’m sending healing thoughts always and thank you!
Also, I have to say it… how do you do all you do?
💙✨💙
Thank you for sharing, Jacque. You are very brave and inspiring...
Wow. What a story. Thank you for sharing.
Jacque, your enthusiasm for life is out there in the words you write and in the ways you interact with members of A Writing Room. You’re an inspiration to keep going regardless of the challenges.