Tuesday, November 26, 2013

Remission of Systemic Lupus Erythematosus

I went to the Rheumatologist yesterday (the one assigned to me by my insurance) to discuss the many, many blood tests he ordered. It was a short visit, but it was very informative.

The Blood Test Results.

Lupus Panel

The first panel he ordered was the Lupus panel. There's no single test that can determine if a person has Lupus or not, but these tests along with a list of symptoms can help narrow it down. It also shows if you have any kind of mixed connective tissue disease or something similar. When I was first diagnosed, I was told I had Undifferentiated Connective Tissue Disease. My doctor explained it as 'almost Lupus' because I didn't have enough symptoms. After getting more symptoms, it was switched to a Lupus diagnosis.

I aced that blood test. The ANA screening was negative, DNA Antibody showed up negative, and the other two tests that I still haven't figured out were negative also. The Sjogren's (pronounced 'show-grin') Antibody tests came out negative. The thyroid test was perfect. A Rheumatoid Arthritis test came out negative. All good news.

Comprehensive Metabolic Panel

My glucose was normal. The Blood Urea Nitrogen (BUN) test came out fine (the BUN test shows how well your kidneys and liver are working). A whole slew of tests came out perfect, including calcium, protein in blood, globulin, white and red blood cell count, platelet count, and a test that shows how well my body absorbs B12. Everything was perfect on my blood tests.

Your Lupus Is In Remission

I was happy to hear that but not completely surprised. My primary Rheumatologist told me last time I saw him that my disease activity had calmed down and extended the time between our visits. I haven't had a flare since.

Now I trust my primary Rheumy with my life and I am going to show him these test results when I see him. I want to hear what he says. It is hilarious watching my insurance-given Rheumatologist fan-girl over my primary Rheumy. Part of me thinks he's taking such good care of me because he wants me to say nice things about him to the primary. 

The Next Day...

After the glow of being told my Lupus is in remission wore off I was able to contemplate my situation. What does remission mean? Well I looked up the definition for you (and me).

re·mis·sion (rĕ-mish'ŭn)1. Abatement or lessening in severity of the symptoms of a disease.
2. The period during which such abatement occurs.
[L. remissio, fr. re-mitto, pp. -missus, to send back, slacken, relax]
remission. (n.d.) Medical Dictionary for the Health Professions and Nursing. (2012). Retrieved November 26 2013 from http://medical-dictionary.thefreedictionary.com/remission
Well that explains a lot. I believed remission meant I would be completely better for however long. But the "lessening in severity" killed my dreams. Remission is not like a cure for some people. And I guess it's not for me. When I go in the sun I still get a rash on my face. I did yesterday. I still feel joint pain even though I lack inflammation in my body (weird, right?). And I still feel tired all the time (though that could be because of the possible endometriosis).

So I'm happy. And I'm sad. And I'm happy, again. With a touch of sad. But at least I conquered my Lupus for who knows how long.

Are you or have you been in remission? What has your experience been? Any advice for me?

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Sunday, November 17, 2013

Losing Friends Because Of Lupus: 4 Tips On How To Recover

A few days ago, an old "friend" replied to a post on Facebook about my upcoming wedding and she said that she would like to attend. I was angry, but I was polite and said that it's a small wedding in another state.

I wasn't angry because she asked to come to my wedding. I want all my friends to attend my wedding. But there is a reason quotations surround her title as a "friend".

Health Isn't The Only Casualty With Chronic Illnesses

This person was one of the many people who disappeared from my life as soon as I triggered my Lupus. For more than 6 months I watched my friends post pictures of them hanging out together on Facebook without me. I never received a single invitation to hang out. I never had replies to any posts on Facebook about how I was in the ER for something new. No "Get better soon". Nothing. I had one friend who stuck around and behaved like a friend.
The Only Friend

It has been two years and it still hurts. The people I would drop anything for deserted me and I don't understand it. My friends who live 500 miles away could be with me in spirit but the people who lived closest couldn't bother.

Apparently This Is Common

I have heard many similar stories from other patients with chronic illnesses over the past two years. Some of them were deserting friends. Some were left by their significant other (I was, too). And others were deserted by family. It breaks my heart to hear all these stories. And I get angry at the selfishness and ignorance of the people who leave. 

I have learned to choose my friends wisely. And I have gained so much from this new wisdom. I have met my soulmate. He is caring and he runs to help me instead of running away. And I have a best friend who I care for deeply. Our friendship was started because we can understand about each other what very few can; we both have chronic illnesses. But that is not all our friendship is made out of. We have something my other friendships lacked. Loyalty.

If You Have Lost Friends

If you have lost friends because of your chronic illness do not despair. You aren't alone. And there are things you can do to fight off the loneliness until you find better people to befriend.

  1. Social Media: Twitter seems to be the best place to meet people. Twitter has such a strong Lupus community. Just search #Lupus. Include the # because you get better results. Same goes with any other disease or illness.
  2. Support Groups: These are great because you can meet people face to face and make new friends. 
  3. Lupus-friendly Hobbies and Activities: I joined an Arthritis Foundation Exercise Program. That's where I met my best friend. We even got certified and taught together for a while. What your hobbies might be depends on your health level. In the beginning I couldn't do much, but now I could do more intense activities if I wanted to. Just remember your health is top priority. Why not try volunteering? The animal shelters can always use help whenever you can give it.
  4. Old Friends: Don't forget about your friends that stuck around just because some decided they can't handle your awesome anymore. Even if going out on the town is out right now, movie nights in your pjs are always fun. Or playing card or board games. 

Have you lost any friends after getting a chronic illness? How did you deal with the loss?

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