I know I haven’t talked about Sjogren’s much, but now is the time. Part of the reason for this blog is to talk about it. This year I am going to be an ambassador for the Sjogren’s Syndrome Foundation. I decided that writing about it was one of the things that would help people. A person with Sjogren’s feels alone much of the time. People see you in public and think, you look fine so you must be fine. That is not the case. We have our good days and we can get out and do things then we have our bad days. If we have to out on our bad days we fake it the best that we can. If out in public I will not let you know how bad I am hurting. Of course that is just who I am.
It is hard for me to put this out there. I don’t really talk about my problems online or in public. Until recently I didn’t talk about it much to my family or friends. As it seems to be taking over my life I am talking about it more. I want people to understand. I also don’t want the others that have Sjogren’s to feel alone. You aren’t crazy, no matter how many times you go to the doctor and they can’t figure out what is wrong with you! On average it takes 7 years to diagnose a person with Sjogren’s. I want to change that or at least help change that.
The past 3 days have been bad for me. Sjogren’s can cause many things. I have come to the conclusion if you don’t know what is causing it then blame it on Sjogren’s. That doesn’t really seem fair, but for the most part it is true. Even if you do know what it is, more than likely it is still caused from Sjogren’s. It surprises me when something is not caused by Sjogren’s. This weekend I have been having a flare. Or should I say a flare within a flare? The past few month have been some of the worst months yet. The medicine is not helping and I have been in pain almost 24 hours a day.
This past weekend I had a gastro flare, which is also caused by SJS (Sjogren’s) I get to where I feel fatigue to the point that I can’t get up or do much. Sometimes I get to where I feel fluish. I am tired, achy and have chills. My gastro flare seems to be all of these things with nausea and headaches. My Hiatal Hernia also started acting up. I’ve had bad chest pain from it.
I have had gastro problems for years. I finally went to the Gastroenterologist last year. I had a study that watched the food move through my stomach. I found out that I have mild Gastroparesis. This would explain why I feel like puking after I eat, but it does not explain the pain that I have often. I have different pain. Sometimes it is right under my ribs and sharp. It feels like something heavy is there. I also have pain around my heart. I feel like it is a heart attack. The pain is so bad and I am doubled over. I had an endoscopy and found out that there is nothing causing my Gastroparesis, so the doctor thinks it is caused from Neuropathy. My Neurologist says he doesn’t think so. Hmmm… After many visits with my Neurologist I am going to change doctors.
Last time I felt like this it lasted almost three weeks and it got to where I couldn’t eat before it got better. I hope it doesn’t last as long this time. The pain is bad enough in my joints. The nausea, aches, chills and fatigue just put me out.