That’s right! Ask questions and take nothing at face value. Love this!
and now you are here helping others and making a difference!! <3
Wow, Amanda! That is amazing many congratulations to you. You Rock!! Thank you for sharing.
Thank you so much for sharing, Daniel!! You are making a huge difference. I resonate with making a joke out of things or needing to request to be alone to process. I also had tears in my eyes when I wrote this question! Keep doing what you do.
Yes! I would tell myself the same thing. I didn’t know how to be my own advocate and just was fed what doctors told me. Second opinions, even third or fourth ones are a great idea. Thanks for sharing, Frank!
Love your response!! So true and I resonate with what you said. I feel I could write a whole book on what I would tell myself, lol! Thanks for sharing, Brittany!
Zoann, very true!! You can’t give love or care to others without pouring your own cup first. This is something I’ve had to learn too. That saying no and not pushing myself to belong or succumb to peer pressure, when all I needed was to step back and heal. Love your reply. Thanks for sharing!
Jesus, very well said!! Especially about balance. I honestly have to say that angels have been a huge part in my journey as well when I’ve felt alone or had hard times, the signs are always there if you are willing to be open to embrace them. Love this. Thank you so much for sharing and doing what you do!
Lynn, definitely would be something I would tell myself too. Thank you for sharing!!
Thank you, Pedro for sharing! I have an extended family member with MS and I live with juvenile arthritis, an autoimmune disease as well. I know how hard it is to do what you mentioned and I would tell myself to do even better as well. It’s not easy.
Judy, I agree 100% with you. Many doctors don’t agree or listen. I’m glad you were able to find out what was really going on with you health recently. Sorry to hear that it’s been hard getting the right answers. I empathsize, as I’ve been in the same boat as well at times. Thank you for sharing!! take care of yourself
I wish I could have known that while it would be rough roads ahead (brain surgeries and spinal surgeries), I would be ok. Freaking out is ok. I wish I had allowed myself that. I bottled up my fear for so long- tried to be strong and brave for others. My feelings were and are valid. That if a doctor tries to write off my symptoms- it is up to ME to ask for second opinions. I am entitled to that as a person and a patient. I wish I could tell my past self to live. There won’t be many opportunities for a few years, but seize them when they do occur. That I’m not alone and I can live as an example; I can prove to be a warrior against my disease. I have seen so many of my fellow IHers give in to the pain. We need more inspiration and hope. And we are our own best advocates. That means me too.
The day I was diagnosed, I always knew something was going on. You know your own body and I already had migraines, peripheral neuropathy, arthritis, depression, anxiety/panic attacks…all the necessary signs. I went to doctors and most of them blamed it on my weight. Then finally I was given a diagnosis in 2014 for Hashimoto’s Thyroiditis and hypothyroidism. Then the diagnosis of Lupus and Sjogren’s in 2016.
So true! I diagnosed myself before I was even diagnosed. Sometimes your intuition/body just knows. Thank you for sharing!
Wow! Thank you for sharing. I would tell myself these things too. <3
My life isn’t over. It’s just the beginning of a new chapter in which you will never forget, or regret. Yes it will be hard at times, but what’s life without a little struggle? Embrace the life you have, even through the pain.
I just got my official diagnosis with endometriosis in the summer of 2019. After not knowing for 16 years. After having the surgery and officially finding out I felt relived. I wish that I would have been offered the opportunity to get officially diagnosed a lot earlier. 16 years is a long time.