Possible Autoimmune Disorder.. struggling!

Thank you for the reply. I am sorry to hear you are going through the same. If you don’t mind me asking, what type of autoimmune disorder do you have? I try to do things to keep me busy when I feel ok. I’ve recently been writing in a journal daily and that has helped some. I made an appointment with a psychologist in April to help deal with how I’m feeling about this. 

Hey. I have been dealing with this for ten years. I have been to the Mayo Clinic twice with no answers. At this moment it is an undiagnosed immune disorder. Its not that my immune system is weak but seems to be in overdrive. Stress, sunlight any kind of physical contact triggers it. Probably like you I feel like I am just wasting away waiting for the end. I’m on my 14th round of medicine. I used to have what I called flair ups that would last for days and then I would get a break of no symptoms for a while. For the last three months it’s been non stop constantly. I’m getting quite depressed. Prednisone was the only thing that helped and now it is becoming ineffective. But you have given me a very good idea me that is to start writing my thoughts down. It seems like a better idea than it rolling around in my head day and night. All the doctors can tell me now is they hope it just stops. Know that someone is out there feeling like you are feeling. You are not alone by no means. 

I am so very sorry for what you are going through. My Mom has also been to the Mayo Clinic with little answers at all over the years. She has Sjogren’s but several other undiagnosed issues as well. I know how frustrated you must feel. It’s nice to find people to be able to talk to that can relate to what we are going through. Long term use of Prednisone is not good for you at all. Plus, your body becomes immune to long term use of medications as you probably already know. I really hope they can figure out some way to help you feel better and get back to living. My primary care physician thinks I have RA or Lupus but I can’t see a specialist until August so I am extremely frustrated at this point. I just try to have Faith. 

Hey. It is nice to find someone to talk to. I’m sorry to hear that about your mother. My mother recently had to move in wirh me for health reasons. I split my house into two apartments years ago never thinking I’d have to Move back here. I kept the other side empty cause I knew it was just a matter of time before I’d have to take care of her. But she has her side and I have mine. I had a friend with lupus and she would spend weeks in bed. I hope that’s not a possibility for you because she said it was very rough. I was disappointed in the Mayo Clinic at first but they studied my records more thoroughly and called me back for another visit and told me the doctor I was seeing was doing as good a job of trying to help me as 9 of 10 doctors there. So I just came back home and started back on another round of meds. They have basically just started over with the same meds. I’m taking prograf which is what they give transplant patients so their bodies won’t reject their organ transplant. And it still doesn’t work. I have also thought about seeing a shrink about my mental state because as you know it’s so hard. I’m not suicidal but when I say if it wasn’t for my son I don’t know if this life is worth it because it’s no life. My son is my best friend and I have only one friend really. Try to keep a network of friends that you can trust and talk to. I’m just a very untrustful person and don’t make friends very easy. I hope you have someone you can really confide in. It’s good to know you have faith no matter what that faith is in. Keep in touch and let me know if you have any improvement no matter how small. Yes the steroids long term is terrible on your body and it has already given me type two diabetes. That almost killed before I knew what was happening cause nobody told me long term use would give you diabetes. It’s a terrible balancing act between the prednisone and my blood sugar. I’m having to take more and more steroids and it is driving my sugar thru the roof. I know your frustration. Some days I don’t want the next day to come but then I’ll have a slightly better day and it helps me get to the next day. That’s why I say just a day at a time. For people like us that’s all we have. I will check my mail more often now because at first all I was receiving was good luck, prayers etc. not really anybody I felt like I could communicate with who knows how it is. Anytime you need someone to talk to or just need to gripe I’m listening. I hope today is a good one for you. Be good. Be safe. Peace.