May is Lupus Awareness Month

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walk for lupus awareness lupus awareness, lupus, disease, SLE, auto-immune, disease, silent killerMy Story:

Hi my name is Lynne St. James and I have Lupus.  Lupus SLE to be exact.  My family, friends, and some of my readers know but I’ve never really “come out” about having the disease.  One main reason is I didn’t want sympathy.  I’d try to keep most of my symptoms to myself hoping if I ignore it, it won’t hurt, or restrict my activities, or lead to other diseases.  Well that didn’t work so well.

I was first diagnosed in 1995,  and I was a newly single parent and with five and seven year old daughters.  I was just going back into the workforce and I felt horrible ALL THE TIME.  By the end of every day I could barely move.  I was lucky that when I finally went to the doctor my regular doctor was on vacation and I had to see his covering physician and I credit her with saving my life.  She recognized irregularities in my prior blood work he hadn’t noticed.

When I went in to see her my hemoglobin was 7 (normal for a woman is usually 11-13), I had high blood pressure and a double ear infection and all my joints were red and swollen.  I begged her not to put me in the hospital because I had the girls to take care of and I was afraid if my ex found out he’d take them away from me.  She agreed but I had to go back the next day, and she gave me meds and made follow up appointments with specialists and after suffering for months or maybe years with this, I was finally diagnosed.

I’ll never forget the day I found out.  I went home and had movie night with the girls.  The movie “The Stepmom” with Susan Sarandon and Julia Roberts was on TV.  As I watched it I couldn’t stop crying, all I could think of is was happening to me.  The song “Ain’t No Mountain High Enough”  played an important part in the movie and the girls and I adopted it as our song from then on.

After I got them settled in bed  I made a promise to myself and to them that I would not give in, I’d fight, take whatever meds I had to and do what I could to get better and hopefully the disease would stabilize.  I was lucky again, flash forward to 2014 and I’m still here.  I’ve danced at both of my daughters weddings, and yup you guessed it — “Ain’t No Mountain High Enough.”

Why Share Now?

Why am I talking about this now?  Good question.  I’ve been thinking about it a lot and I’ve decided that hiding it isn’t the best thing.  By talking about it someone might realize they have the symptoms and go get checked out before it gets as bad as mine did.  Or maybe it will give some insight to those who love someone with Lupus.  I’m not going to kid you, Lupus sucks big time, but it’s better to know and get treatment then to ignore it and die.

There are different types of Lupus and not everyone will react the same or exhibit the same symptoms.  Most people think that if you have it you’ll get the butterfly rash on your face or elsewhere, but I have never gotten the rash.  Oh and another thing, because Lupus basically makes your body think it’s allergic to itself you can get lots of other diseases as by products of Lupus or the medicines to treat it.  I have diabetes because of 9 years on prednisone, I have also had 2 strokes, fibromyalgia and a very poor immune system.  Basically if you sneeze in my direction I’ll probably catch it.

Now those are the bad things I have, but I also have good things.  I have a loving husband and family, who are supportive but don’t pity me.  I have friends who help when I need it and understand when I can’t do something I’ve said I would.  But most of all I have LIFE– and that’s the most important part, and along the way I even managed to have a few dreams come true along the way like being published.

I’m going to make a concerted effort to keep posting about my story and how I’m dealing with the ups and downs.  Right now I have a goal to lose weight – a lot of weight.  One side effect of prednisone is weight gain, then the pain involved with Lupus makes it hard to exercise.  I’ll track my progress here too.

Well, I guess when I decide to share I go big or go home, huh?   If you’re still here reading this, thank you for your support.  If you or anyone you know has Lupus please feel free to share your stories.  I hope this will become an interactive segment on my blog for all of us.  If we fight together we will win — maybe not this month or next but eventually.

~~~~~

More Information About Lupus:

Lupus.org
What Is Lupus?
Common Symptoms
News & Stories

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12 Comments

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  2. Whoa, what an incredible story!! I was definitely fighting back tears when you got to the part about fighting and dancing at your daughters’ weddings. You are one strong woman! I can only imagine what a challenge it was to raise a 5 and 7 year old while working and battling this debilitating disease. I’m a part-time nanny and chasing two children (ages 2 and 3!) already wears me out, even though I’m lucky enough to be in good health.

    For my other job, I helped put together this lupus infographic last year, in case you want to check it out or use it in any of your endeavors to help educate the public! It can be found at http://www.achieveclinical.com/news/lupus-awareness-month-purple/. Thanks again for posting your inspirational journey. I think it’s awesome that you shared and that more people than you know will benefit from reading this. Hope you’re having an awesome week!

  3. Michelle

    Hiya Lynne,

    I had a friend who had Lupus. Unfortunately she didn’t take care of herself properly, and we lost her a few years ago. We, as a community rallied around her for years and still help her husband take care of her daughter Destiny. I think it’s great that you are taking the attitude you are. You truly are an inspiration, and I think if more women would have been around when she was diagnosed, maybe had a support group, she may have taken better care.

    Thank you for sharing your story. Big hugs and I look forward to hearing more. As a cancer survivor I know everyone has a story, but each one is unique. You are special and wonderful and brave.

    Hugs,
    Michelle

    • Lynne St. James

      Thank you, Michelle. It is a wonderful thing your community is doing to help Destiny and her father. I’m happy to hear you’re a survivor and I’m sure you have an inspiring story to tell as well. I look forward to getting to know you better.

  4. Patty Smith

    Hi. I also have SLE, Fibromyalgia & at least 10 other crappy things related to or caused by the Lupus. I was diagnosed in 1997, and though I’m no longer able to work as an RN because of the Lupus, I’m blessed to have a great family and 2 grandchildren I adore. At 45, I often feel 80, but like you, I’m still here and still going. Good luck with everything, especially the weight loss. I’m trying hard on that, too.

    • Lynne St. James

      Hi Patty,

      Thank you for sharing your story. I don’t think I’d still be working at my day job if I couldn’t telework. Maybe we can work together on the weight loss, I have to take it very slowly but I’m determined. I often feel 80 as well so I know what you mean. I think one of the worst parts for me is when I can’t concentrate on things and my brain just won’t wrap itself around ideas, for work that’s critical and for my writing as well.

      If you have any weight loss or living with Lupus ideas that work for you and you want to share I’d appreciate it. 🙂

  5. Janka Dustan

    Oh Lynne, you are so brave, Im crying here reading your life story. Thank you for sharing it with us. I have my own health issues that I deal with every day but compare to yours it is nothing. So keep going huni, dont give in and dont give up. Xoxo

    • Lynne St. James

      Janka,

      Thank you so much for stopping by. I am sorry it made you cry. *Hugs* One thing I have learned is that everyone has something and it’s just how we deal with it. I appreciate all the support from everyone that means so much to me, but hopefully this post will help someone somewhere and then it will be a great thing! <3

  6. Catharine

    Awesome post, Lynne! As someone with an autoimmune disorder I can certainly relate to all the struggles. Hang in there and keep fighting!

    • Lynne St. James

      Always, Catharine!!! I’m sorry to hear about your struggle and I’m glad you’re fighting as well. <3

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