Tuesday, May 1, 2012

I'm Coming Out!

I'm coming out and I named my Blog "The L Word."

What could this mean?  Obviously, this is me telling the world that I have Lupus -- a disease that's highly misunderstood and difficult to diagnose.  I intend to use this blog as an outlet and a tool for my own good health because being ashamed and hiding it is slowly killing me.  I have been reluctant to share my diagnosis, but I know I'm not alone and I don't want to feel like I have this giant black cloud that follows me everywhere. Everyone sees the cloud, but no one talks to me about it.  It feels very disingenuous.

Presently, I am a 35 (almost 36) year old Mother of 2 boys, a wife to the love of my life, a daughter to 2 amazing parents and a sister to 1 pretty awesome brother.  We took some family pictures for my Dad's birthday back in November and this is a pretty accurate representation of my current nuclear family:

That's Dad (aka "Jerry" to most, "Buddy" to Johnson family, "Poppy" to my kids and "Daddy") and my Mom (aka "Ruth," "Nana" & "Mommy") in back, our now 9 year old son Grant on the left and DJ (will be 11 in July) on the Right.  In the center is my OLDER brother Jerry III and his wife Dana Candace (what a beautiful name) then there's David (aka "Dave") and me (aka "Candace Renee") front and center.  (side note: we all laughed A LOT when these pictures were being taken.  My brother and David were laughing the most at some inside joke about poking?)

Dad, Mom, me, David, Betty & Roger
I also have fantastic in-laws (well some are better than others... I'm kidding!). My parents have been married for 43.5 years and my in-laws have been married 37 years this May.  So if the law of averages is somewhat accurate it looks like David and I have a future together. David has 2 brothers who are both married to great ladies and between them I have 2 nieces, 2 nephews  and 2 great-nephews.  I also have some cool Aunts and Uncles and a few good cousins.  My family, both near and far consists of several comedians and a few that try very hard.  We laugh a lot, but we cry hard too.  I know that at any time of day I could call any of them (those related by blood and those by marriage).
I am an emotional human being.
I still want to make my parents proud.  I still cry when I disappoint them.
I may put on a brave face, but I scare just like most.
Cry like many.
Love passionately and deeply.
And I love to laugh until it hurts, I snort, or I pee my pants.
Life has been full of challenges and I'm not vain enough to think that Lupus is the worst thing to ever happen to me or anyone around me.  This is just a part of who I am and learning how to live with Lupus has been challenging.

Truth be known, the first time I ever heard of Lupus I was in college.  I don't remember why I had gone to the doctor except that I was having general joint pain which I attributed to my arthritis.
I was never ashamed of the arthritis.  I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) in 1983 at the age of 7.  From what I remember, I had been in pain for several months and the pediatrician had run many tests and sent me from Orlando, FL to Shand's hospital in Gainesville, FL.  In 1983, JRA was an uncommon diagnosis and pediatricians didn't want to touch me.
I remember missing 2 weeks of second grade because I couldn't walk.  Since the doctors didn't have a name for it and it didn't seem like anything else was wrong with me, a lot of people (including my Mom) thought I was faking the pain to stay home from school.  My Mom still harbors guilt for doubting me, but I can't blame her for it.  After all, I was 7. As the mother of 2 boys who are now 9 and 10, I would probably doubt me too.
Honestly, it was at the age of 7 that I started to suppress my pain and keep things to myself. Nothing the doctors ever did really helped with the pain and complaining about it didn't get me much either. I quickly learned to hate the feeling of "other people's pity."  I learned that in order to avoid "other people's pity," I needed to keep shit to myself.

I say that to say this; my tolerance for pain is roughly 28 years strong.  When I complain, it's gotten pretty bad because I hate pity and I hate even more not being able to do stuff for myself.  My joints have been aching for 28 years and my ankles crack with every step I take.  I can't sneak up the stairs in my own house.

Back to the doctor I saw in college: That I even took myself to the doctor suggests the pain was bad and my not remembering the intensity of pain suggests that I blocked it.  This was in 1998 and I still have the lab-work printout with his handwriting on top. It says "systemic lupus erythematosus."
He delicately told me that a diagnosis was not simple and that I shouldn't pursue a diagnosis because there wasn't much I could do about it and the label might make me uninsurable.  So, I let it go.
But remember, in 1998 we were still using dial-up modems and this was before "Google" launched in September of 98, and the internet was hardly what it is today.  And "The Library" was the name of a club in Tallahassee which I never checked out just like I avoided checking out books.  So, I didn't do too much research.

I didn't think about lupus again until 2 years ago.  Based on that doctor's visit in college and the few times I had heard the word mentioned, I had a very negative understanding of Lupus myself.  I had associated the disease with mental illness and crazy people.
I couldn't have been more wrong.
I have battled severe depression since I was 17.  I have been on Prozac, Paxil, Wellbutrin and several other anti-depressants in the last 20 years.  Some worked well and some had negative side-effects like weight gain, low libido, and zombie-ness, to name a few.

In college and while on Prozac I tried to commit suicide.  Twice, in fact.  I've never shared that with anyone (other than the people who were present).  I was Baker-acted twice.  I had two charcoal-slurpees and that's all I want to share about that.

My intent was real and I didn't place any value on my own life.  I didn't understand the effect that my planned suicide would have on my family.  Until that second time, when my Dad and Ed Soistman (a man who was installed as an "associate in ministry" on the same Sunday as my Dad and loved me like his own daughter) dropped everything late on a Friday night and drove from Orlando to Tallahassee.

Eddie had a reputation for having a double-solid-lead foot when driving.  A drive that should have taken 4+ hours was done in 3.  Eddie and my Dad had chaplain responsibilities and privileges and they busted me out of the crazy hospital.  At that time I was stoic.  At that time, I didn't think anyone would even notice if I were to disappear.  My Daddy and Eddie were (and still are) Angels sent to set me straight.

Eddie passed away suddenly in 2010 at the very young age of 91.  I played my flute at his funeral because I needed that time to honor him and it was by far the most difficult performance of my life.  I met Eddie when I was 3 and he was at every single milestone in my life from age 3 to age 34.  I know that he will continue to be there in spirit just as he is with me now as I type these thoughts.

I've been ashamed of the suicide attempts and depression.  I've taught myself to hide those things from the world and I have poisoned myself by doing that.
Depression is a beast.  That stupid commercial for whatever depression drug that says "depression hurts," well it's true but I still hate that commercial.  The deeper point is, depression isn't just in the head -- it actually physically hurts.

People hear about depression, and if they haven't had a chemical imbalance of serotonin or an otherwise uncontrolled depression, they will give awesome advice.  Like, "Snap out of it," or, "You have so much to be happy about." That's when my depression monster completely retreats in my head, otherwise I would scream at those awesomely fantastically optimistic people to "STFU!"
But I don't, and I only get that much more depressed. It sucks SO bad to be sad just for the sake of being sad.  Wanting to be happy and faking a smile so you don't bring everyone down, but deep inside screaming of just plain miserableness.  Only living life because of the guilt and pain that comes with suicide.  Living for others and not for yourself which ultimately turns you into a "people-pleaser" which is just another illness.  Learning to say "no" and learning to be selfish have been life-changing skills for me.  Those two things alone are an anti-depressant.  But, if you truly have a chemical imbalance as I do, it is impossible to treat depression with will-power alone.  I'm not ashamed of it anymore. It's just not a conversation starter.

Obviously, depression is not Lupus.  But, Lupus is very much a depression stimulant.  At times my health starts a downward spiral, and that's when the depression kicks into overdrive.  (More on that in another post).
Depression and an early childhood diagnosis of JRA with ANA's that were thru the roof were actually early indicators that I had lupus.  My first child was born 3 months premature.  He weighed 1 lb. 15 oz and he spent 84 days in the NICU.  I had a miscarriage after he was born and then I had my second child full-term with the help of 3 perinatologists and months of bed rest.
I now know that I was lucky to have children at all because I wasn't properly diagnosed at the time and therefore not under the proper treatment.  The best article I found about pregnancy and lupus can be found here.  However, I didn't have this information 11 years ago during my first pregnancy because I wasn't diagnosed.

I can't say that I particularly care for labels.  But the labels are the facts and I want to share my journey. There's the hope that it might help my family and friends understand why I push people away and clam-up, but also because I hope that it might help someone else who is going through this painful journey or knows someone that's crying out for help in their own journey.  If you are one who likes to stick to the facts and feels that labels are important, here is a small list that I hope to discuss as they pertain to me:
Lupus  (um, duh)
Rheumatoid Arthritis (kinda covered that a little)
Fatigue (sounds really lame but it consumes me)
Raynaud's disease (I have pictures)
Sjogren's (the reason I have had several root canals, 2 dental implants and the need for a few more)
Depression (I think I covered that a bit)
Photosensitivity (this is my favorite because it's not just the sun, it's UV lights too)
Hypertension (one of the most difficult labels to accept at 35 years old)
ADD (not really related to Lupus, just part of who I am)
OCD (the only diagnosis I embrace and affectionately call CDO) (CDO is just like OCD except the letters are in alphabetical order. - THE WAY THAT THEY SHOULD BE)
OCD is also the reason I just made that list.  

Many people (if not most), have not heard of Lupus at all or they don't know much about it.  This video was made by the Lupus Foundation of America:


  1. Well..this might take a few minutes to read..but I wanted to be first to tag you! Glad to see you're writing!!

  2. Very, very, very touching to read. I love your honesty & I'm so proud of you for sharing your story!


  3. I found you because of a search for Sjogren's Syndrome Cruise because I've learned I'll be in Alaska with all this sun sensitivity... and find here a person that seems so very familiar. It's good to "meet" you - I too have Lupus, Sjogren's, and various other assorted beasties to fight. Congratulations on "coming out" and becoming an advocate for these diseases. :)

    1. Ellen: Thanks for your comments and best wishes on your cruise. I am an avid cruiser and it's still my absolute favorite thing to do. I live so much of my life as a vampire, that it's easy to enjoy a cruise without the sun.

    2. Candace, I'm stopping by your blog again as I prepare for the cruise. True, it won't take place until next summer, but I would rather plan slowly and easily and stress free, than wait until I need things and have to run around looking for them. I have considered a wet or dry suit for swimming, but that's about all the farther I've gotten. Would love more information on how you manage to cruise with sun sensitivity!