Advocacy

Test after test with no results.

A powerful post on the truth of addison’s disease by foundation contributor, Ilena Bickley.

 

One of the most frustrating things about having Addison’s Disease is the extreme exhaustion. I want to do things, but my body doesn’t allow for it. I have a life to live, but I can barely make it from my bed to the couch. I can’t explain what causes the exhaustion. I have tried to track what I have done, but no matter what it is, there is no consistency. One day I can rest all day long and the next day, I am even more exhausted.

One day I can push through and get everything I need done and the next day have all the energy in the world. No matter what I do, I can never predict when I am going to have a bad day.
All the other strange symptoms that come with it as well. I have no clue where they are coming from or if it’s from Addison’s. I can’t tell if one day I will be able to walk, or have nausea, or extreme joint pain. I know that I have gotten worse and when I go to the Drs. they want to run tests to see what is wrong. And of course the tests all come back normal. Why are they normal, when I don’t feel normal? Is this my new normal? When do you stop going in for tests and just accept all the new, weird, painful symptoms? Can we do that? What are the risks for ignoring them? So many unanswered questions.
I just had my colonoscopy and endoscopy on Tuesday and that was hell. They ended up taking some tissue and sent it off, but everything else looked good. I have horrible pain, bloating, and nausea when eating, so why does it all look normal? I know this is not in my head. I want to be able to eat again, but if the results come back with normal results, what do I do? I am already vegan. This issue just started over a month ago so I am at a loss of what is going on.
I like to look through Facebook and Instagram to see if other Addisonians are having these same issues. I know every Body is different, everyone has multiple autoimmune diseases, so all the symptoms are different (a lot are similar though).
When will Drs. start taking us seriously? I wouldn’t wish this disease on anyone. It is such a difficult life to live. People don’t believe you…. Drs. don’t believe you. You feel like you are losing your mind and then start to question your own symptoms. No one wants to feel like this. No one wants to live with this kind of pain (at least I hope not).
I can understand when results always come back as normal. It’s hard to believe that something is going on when there is no proof. There is no proof of a lot of things, but people will search and search to find answers…. So why is it different when it’s a person’s body. I think that autoimmune diseases are known about enough for their to be more research done on it.
I recently watched Brain on Fire. It was like watching my own life (to a point). They ran test after test and said she was fine, but there was something wrong. She had amazing parents who wouldn’t stand for their answers and they pushed. Finally one Dr. knew something was missing and she went seeking help and found it. The Dr. worked hard and finally found out what was going on. I know if I was a Dr. I would want to exhaust every resource in order to find answers and then keep going. We are not guinea pigs, but to some extent I would be willing to try things in order to get answers and help the research in curing autoimmune diseases. There is so much out there on cancer, but autoimmune diseases seem to be just as common as cancers.
Even though your test results might not show anything, please don’t give up. There might be some Dr. out there that will look harder and find something that will change the game for all of us. Keep fighting and keep advocating for yourself. I know it’s exhausting, but we have to keep fighting.

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