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Jun 04, 2015 7:49 PM

Well, this has been a lovely freaking week. Got told on Tuesday that I do have this condition by my surgeon and that it is going to be basically a lifelong battle with surgery to keep this condition under control. Kind of sucks to be told that at 34 years of age and to also be told that it might never go into remission. I'm sorry, I just have too much on my mind tonight.

Jun 04, 2015 8:15 PM

Amanda it's best to let it out. Don't hold it in. I'm so sorry for your rough week and even more so for this diagnosis. You lean on us whenever you need to, we'll be here. I'd hug you if I could. Do some research and learn what you can. Doctors have been wrong before, so we can hope & pray it won't be as bad as the doctor said. I'm 53 and overwhelmed at 20+ years more like I am, so I know it's much harder for you and all those younger with chronic issues. I will keep you in my prayers, and my heart! 🙏🌼

Jun 04, 2015 8:23 PM

Vent all you need to! Everyone needs somewhere to let out. I used to keep everything bottled up until it got to be more than I could handle. I won't go into details because I don't feel that's what you need right now. Just know that we are here and willing to listen. Sending you a cyber hug.

Jun 04, 2015 8:34 PM

I'm just so incredibly frustrated that they just now decide to tell me this. And it didn't help that she told me right as she was sticking me to numb the back of my leg. That just blew my mind but it's okay at this point. I just wish all my docs(however many I have, I don't even know at this point) would all get on the same page and figure out a plan of care to see if they can get it in remission if that's even possible.

Jun 05, 2015 12:12 PM

Amanda, I am so very sorry you got such distressing news. I understand what you mean because every time I go to the Rheumatologist or the Neurologist or orthopedist, I keep getting more diagnosis of these autoimmune diseases and it sucks. They all cause their own kind of pain and intensity of pain. I am 50 and have been dealing with this for over 22 years now. I don't remember what it is like to not have any pain. It is something I guess we all have to live with and pray that as time goes on someone somewhere comes up with something that can help with pain and these terrible diseases. In the meanwhile, we all have one another and we will somehow keep pushing on and getting through day by day. Always remember that you're not alone and there are people like me and lots of others who are praying for you and each other.

Jun 05, 2015 1:30 PM

Amanda, I'm so sorry that you got this news, and that you have this awful chronic condition. It sounds terrible. ((Hugs))

Jun 05, 2015 1:37 PM

Amie, it's not really awful. It can be at times in full flare but I think once I get everything kind of settled, we should be good to go for a bit without a problem

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