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CatchMyPain Community and Pain Diary App to manage chronic illness

Voice for us all

Nov 18, 2015 12:01 PM

Hi, guys. My name is Hannah. I have lupus. And I know the struggles first hand and how hard it is to live with. But I am done letting it control me. I am done hiding it from the world. I will be a voice for those who don't have one. I am going to spred awareness because that is our only chance at a cure. I am putting together a video and I need support. Share your lupus story and let me help you be heard. You have something to say. And it could help to put a stop to all the pain. I hear you. Let me share your stories so the world will listen too.

Nov 18, 2015 12:25 PM

Hannah, welcome to the family community. I want you to know that this is a wonderful place to come and voice whatever is bothering you or whatever you want to talk about. There are no judgements here. We all "get it" because we live with pain every day. I have DDD/DJD, cervical spondalytic myelopathy, scoliosis, lordosis, bilateral vagus deformities of the knees, have about another dozen diagnosis including possible lupus. I have had 29 surgeries in 22 years. There are many wonderful, compassionate and loving people here and you will never be alone. There is always someone who will come running (or at least waking fast.. LOL!!) to help when you need it. I hope you settle in with us for the long haul. So, welcome again, sending {{{Hugs}}} and prayers to you. 🌻🙏🏻

Nov 19, 2015 5:29 AM

Hannah, I think that is a great idea. As Always said this is a safe place to communicate about our pain and how it's affecting our lives.

I don't have lupus. I have fibromyalgia, Sjogrens, & hypothyroidism, OA,DDD, TMJD, Asthma & Allergies, and multiple other issues. I had surgeries and illnesses before 2010, but always bounced back with pretty good health. Then in 2010 they removed a pelvic mass (paraovarian cyst), along with 4 other procedures in one. I've developed all my autoimmune disorders since then, among other complications from the mass.

Although I have bad days, and some really BAD days, I chose to not let my illnesses rob me of living. It's been a battle but I'm not giving in to it, I'm not giving up. I'm trying everything I can to stay as active and mobile as I possibly can. Even with my illnesses I am thankful. My faith in God is strong. I'm blessed with so much I've never thought of before I became chronically ill. I've been blessed with finding this community and meeting so many people, who not only understand, but also have become dear and important friends, like family.

I wish you the best with your video. Good luck & God bless! 🙏🌼

Nov 19, 2015 8:26 AM

It sounds like an interesting project. At one point I made a photo essay called "Living (or not) with Chronic Pain" I don't know if I have lupus, the docs think maybe but there are so many other things I might have, it almost doesn't matter anymore.

Honestly, my dad and I both have symptoms of Parkinson's, but that's one answer that I won't see, because it's diagnosed after death. Ib might have lupus, I've had the characteristic rash, but at one or I just felt like I was blushing at a weird moment, or had to put my head down on my desk so people wouldn't stare.

My story is simply sickness, awkwardness, being 15 and shy and tired. Going through a cycle of needing a cane, then a walker. Of getting better, then worse. I've let my illness define me in many ways, because I've always had it. I've had pain free days, once or twice a year for as long as I can remember,and they're wonderful but I don't know what it's like to have a live like that.

It still amuses me when adults talk about "energy and vitality of youth" and here I am, trying not to fall asleep in class, trying to live, laugh, and love, giving my all, but really just surviving. I come home, and crash, then do my chores. Last night was the first night I've slept this week.

Every person has a different story, when I gave my presentation to my photography class, I ended up crying but did find other people with chronic pain, and it opened up a conversation most teens don't have. In my freshman year, we did a full school 3 day camp to kick off the school year, and I was having horrible pain and little to no medication. I met a few juniors and it was nice to just talk, because they had chronic pain too, but docs doesn't grieve them, neither did their families so they were having the easiest meds to find, alcohol and cigarettes mostly, but it was nice to just be able to talk about pain without judgement.

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