Wednesday, April 4, 2012

I Write About My Health Because...

I remember the day my doctor told me I have Undifferentiated Connective Tissue Disease very clearly. The visit before, he had suggested I might have a rare type of arthritis, like my aunt. She's always in pain and has to get her medication through an IV. My symptoms were very similar to hers, so we all assumed that was probably what I had. It's not what I wanted to have, but you don't have much of a say in these matters.

We were sitting in his office waiting for him to come give me the verdict. I was so nervous. I hated my mom for being there, while at the same time I was very grateful that she was there to support me.

My mom left to use the bathroom right before my doctor came into the office. He and I sat in silence while he looked through my records. My hands were shaking and my heart was beating out of my chest. I knew that in a few short moments, this would be the moment I would remember for the rest of my life. This would be the moment my fate would be decided and my whole life would change drastically.

My mom finally came back from the bathroom. The doctor stood up, shook her hand, and then leaned against his bookcase before starting his introduction. "Well, you don't have what your aunt has. Looking at your X-rays, at your blood work and your symptoms, you have what is called Undifferentiated Connective Tissue Disease." He then went into his explanation that basically, I have Lupus, but I don't have enough of the symptoms to be defined as such by the American College of Rheumatology. My heart dropped when I heard the word Lupus come out of his mouth. I had heard of it before, but I knew almost nothing about it. I desperately wanted to cry, but my mom and doctor were there. I needed time to process my feelings on my own. There were too many people there, and I had to listen to my doctor's explanation, my mom's questions, and figure out how I feel all at one time. I was overwhelmed.

When I got home, I googled Lupus and tried to find blogs written by people with Lupus. I looked up everything, from pain management, to cures, home remedies, what is Lupus. Everything I could think of. I didn't find much. Not as much as I would have liked. The blogs I did find, I didn't feel like I could relate to them. Or they hadn't been updated in years. I wanted useful information I could apply to my life. I wanted to see someone living with Lupus and living a full, wonderful life.

This is the face of someone who will conquer all.
After my medication started kicking in and I was able to do more things, I knew I had to do something for other people out there with Lupus or similar problems. Even though I am not yet at the point where I can say I am living life to the fullest,  I can work my way up to that point. People can watch me become something greater than this disease, and maybe I can help someone else. I don't want anyone to feel as alone and helpless as I did in the beginning. I want to be the face of Lupus. I want to be the face of victory and overcoming challenges. I want people to look at me and say "She is the girl who conquered in spite of everything she was put up against."

That is why I write about my health.
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  1. Oh, my gosh... I can so relate. I grew up knowing I had Neurofibromatosis type 1, and so when I was 30 and my blood tests came back revealing Undifferentiated Connective Tissue Disease I thought, really!?! This too!!!??? How can I have BOTH!? I was angry and scared. When I found out I was alone, at home, late at night. I had just started nursing school and I was devastated and heart broken and totally defeated. But like you say, I want to succeed despite what has been thrown at me. NF hasn't taken me down and neither will this. I think that already having one major diagnosis under my belt helped me pick up faster than I would have otherwise but I am now 34 days away from being pinned as an RN. :) I hope you keep fighting towards your victory. Thanks for your words and for sharing your experience.

  2. Congrats on your success! I will never stop fighting. I'm glad that you could relate to my experience. :)

  3. I started out about a year and a half ago just out of the blue with knee pain . I was positive RNP and negative ANA. My doctor told me that I have the cells for Lupus but I don't have Lupus. I have Psoriasis on my kneesand elbows and i have arthritis in my knees due to that also arthritis in my hands. They also believe i have Fibromyalgia. Since then I have had a lot of other problems over time. It was also stated when I first went to my Lupus doctor a year and a half ago that I might develop undifferentiated connective tissue disease. But have not been monitored since then and like I said have had lots and lots of more symptoms since then. In January I will be going back to my Lupus doctor about those symptoms and talk about talking either Methotrexate or Plaquenil. Can give me any insight or advice please?

    1. Well, I am on Plaquenil (the generic brand of it) and it took about 6 months for me to really notice a difference. It has helped, but I still deal with pain daily.

      I also have found an anti-inflammatory diet to be helpful. You might want to ask your doc about that. See if he/she knows anything about it.

      I would write every symptom down, even if it eventually goes away. Even the stuff that goes away is important. For example, I would get a rash when I went in the sun, but that happened my entire life so I didn't realize it was a symptom. And until recently it never occurred to me to tell my doctor about it. But after I did, I learned to wear sunscreen all the time and take vitamin d since I can't really soak up the sun.

      I'm kind of rambling, but there is so much I could tell you. Really, I've written quite a bit about it here on my blog. Some of my February posts deal with doctors. But if you have any specific questions, let me know and I'll do my best to help you out.