You are not alone

We hear all too often of autoimmune diseases and chronic illnesses that plague people’s everyday lives. I have one of those myself that I battle every day. I haven’t been very open about this in the past, out of being embarrassed that I wasn’t a perfect human being. I wanted to keep up this visual of me having everything together and no problems what so ever. Well, news flash, that doesn’t help anyone, nor is it living my actual life. Granted, my blog is tiny and I am not sure anyone has even looked at it. I thought I could take this opportunity to talk about my chronic illness, and maybe, just maybe someone else has something similar and needs a little support.

My journey started a few years after I had my youngest child. I began to feel tired. Not just in need of extra coffee tired, but can’t move my arms and legs kind of exhausted. At that time, doctors dismissed it as usual, possibly caused by heavy menstrual cycles. They continued to test my iron levels coming back perfect every time. As time went on, I began to lose my hair in massive amounts and had trouble catching my breath, and my heart began to beat erratically and fast. It became so severe; my husband took me to the emergency room. That is where they decided I had nothing wrong with me; it was all in my head and needed a therapist. That was a gigantic blow to my soul. I knew deep down something was wrong, but I felt utterly alone, and at my wits end. Unless you have been to that spot, you don’t quite understand the desperation one feels. Keep in mind, I was a dancer most of my life and never had energy problems before. Not only did I feel like my body was failing me, but I had nowhere to turn. It felt like I was dying, causing me to make final wishes known. It was the worst moment of my life. With the urgency of my husband, I agreed to see one last doctor. He is my angel and saved my life. It was an internist that decided to test my levels. The standard iron test does not do this. It is an entirely separate test, and most doctors will not and do not run it. They found that my ferritin levels were deficient. What the heck is ferritin? It is the major protein concerned with iron storage and serves as an indicator of the amount of iron stored in the body. Think of it as a reserve, perhaps when it’s depleted; that is when iron deficiency anemia begins. This was the start of my journey. I wish I could tell you that everything was smooth after this, but I can’t. It was several years of iron infusions, second opinions, and many blood tests; needles don’t bother me anymore. It’s my new normal now.

I continue to get iron infusions every two months and see a hematologist every six months. They have no idea why this happens to me but have discovered it isn’t from blood loss. I have been told there is a possible genetic component. No matter the reason, it’s a chronic issue I have to deal with regularly. Having a treatment plan has helped me beyond measure. I feel like a person again. It’s not perfect, and I do have “why me” moments. Overall, the message I have for people is never to allow anyone to make you feel crazy or wrong when you know your body more than anyone. Keep fighting, keep looking for answers, and understand that the world is full of support. You are not alone. I would love to hear your story or answer any questions you may have.

 

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