The Day I Thought I Had Lupus (Actually, it was more like 1,460 days but whatever).

Before I begin this post, I want to say a few things.  First, this post will be long.  I make no apologies.  I tried to break it up into sections to make it more reader-friendly for you.  You’re welcome.  Second, May is Lupus Awareness Month so I will continue posting about this topic this month.  And lastly (and most importantly), THIS POST SAYS EVERYTHING ABOUT THE DISEASE AND NOTHING NEGATIVE ABOUT MY DOCTORS!!!!!!  I HAVE BEEN BLESSED WITH THE MOST WONDERFUL DOCTORS EVER AND I DON’T BLAME THEM FOR A SECOND FOR THE HELL I WENT THROUGH!!  Lupus is a disease that is diagnosed based on RULING OUT other problems and is very difficult to rule in.  There is not one test (that I am aware of) that can definitively diagnose it.

It all started about 2 years after I went back to school.  This was also the year my mother died.  Stress can do wonderful things.

I was working on my Associates Degree full-time during the spring and fall and part-time during the summers.  This particular summer was very stressful for me.  I always sucked in math and this summer was dedicated to taking (and acing) Statistics and Pre-Calc.  My mom had also been sick again.  By “again” I mean “still sick but now we need to get her to the hospital even though she said she would never go to the hospital again.”  More on that in a later post.

Zits, Bald Spots, and Allergies

It seemed like out of the blue, I started developing these things on my chest that looked like zits but when they never cleared up, I started to worry that it was Psoriasis.  My Mother-in-Law was sure it was Shingles and my Mom said Scabies (EWWWW, Mom!!!  It isn’t bugs!) and when I spent any time in the sun, these zit-like things started to really burn.  It hurt like hell and at first I thought I was allergic to the suntan oil I was using.  Being the procrastinator that I am, I put off going to the doctor.  I just figured that if I stop picking at them, they would clear up.  They didn’t.  They just turned into red, scaly spots that never cleared up and would sometimes scar.

One day, while I was hanging out at the firehouse, my friend said, “What happened to your head?  It is all red.”  I had just dyed my hair that morning so I told him that the hair dye must have stained my scalp.  No biggie.  He knew that wasn’t it but he also knew better than to argue with me and he dropped it.  A few minutes later, we got an ambulance call.  While I was tending to the patient, my driver said, “Nicki, what happened to your head?”  JC, AGAIN??!!  ”It’s hair dye.”  He said, “No, it’s all red and you have a bald spot!”  I was pissed that he had to announce this WHILE I WAS TAKING CARE OF THE FREAKIN’ PATIENT and although I started to get worried, I decided that he was exaggerating and I wasn’t going to worry while I had a patient to take care of.

I got back to the firehouse and went straight to the bathroom mirror.  I had a bald spot the size of a dime and the skin was very red right on the top of my head.  I freaked and checked the rest of my head.  Because my hair is incredibly thick, I didn’t realize until then that I had several bald spots.  Some were the size of a nickel!  I started crying.  My husband told me that it was nothing to worry about and I screamed at him, “Sudden, unexplained hair loss in a woman in her 30′s IS something to worry about!!”  I called the dermatologist.  Because I had never been there before, they told me I could be seen in a month.  I cried again.  The receptionist asked if it was an emergency and I replied that I seemed to have developed bald spots overnight.  She told me to come in the following day.  ”See Chris???  I TOLD you it was serious!!”

After I made that appointment, I noticed that the spots on my head were starting to hurt and by the time my appointment came, it felt like my head was on fire.  I walked into the office crying and when the doctor asked me what brought me in that day, I blurted out through tears, “I HAVE LUPUS!!!”  She asked me if I was given that diagnosis by my doctor.  ”No.  But I KNOW it’s Lupus.  My aunt died of Lupus.  My sister has Psoriasis.  My mom has Scleroderma.  We are the autoimmune family.  Now I am losing my hair and I have this zitty-rash thing all over my chest, near my ears, and on the top of my back.”  I was sobbing.  Partly because of the pain but mostly because of the fear.

She assured me that she didn’t think I had Lupus.  ”Let’s see what you are allergic to.”  She did a Patch Test.  Three days later, I had the test read and it turns out that I am allergic to a ton of crap.  One of the things I am allergic to is in all of my shampoos, conditioners, and hair dye.  That totally made sense.  My breakouts on my chest, face, and back were due to the hair dripping.  All I had to do was read the labels and avoid that ingredient and I would be all set.  Thank God.  She gave me a prescription for steroidal creams for my head, special shampoo, and lotion for my skin.  It cost a fortune and of course, none of it came in generic form but I didn’t care.  I didn’t have Lupus.

“You Have Alopecia Areata.”

After six months, the spots didn’t improve.  They got worse.  Although they no longer burned, I had several bald areas.  Luckily, my hair is so thick that I was usually able to do creative things to cover the spots but at one point, it looked like this at the nape of my neck and extending behind both ears.

This is a pic from the internet. I refused to take pics of my own head.

I looked like a person undergoing Chemotherapy treatments.  And of course, I cried a LOT.  Thinking back to the Patch Test, I remembered that I was also allergic to latex.  I thought, “Nicki, you stupid ass.  There is latex in the headbands!”  I stopped wearing headbands but I still kept losing hair.

I started seeing the Physician’s Assistant instead of the doctor at the dermatologist’s office.  I liked her better.  She had much more compassion for me and I really needed to feel like I wasn’t being a drama queen.  She told me that I had Alopecia Areata, an autoimmune disorder that is exacerbated by stress.  The treatment is to limit stress, continue to avoid anything I am allergic to, and cortisone injections in the scalp to reduce the swelling around the hair follicles.  Shots?  In my head?  Sure, sign me the fuck up!!  I received about 90 injections that day.  Again…you guessed it…I cried.  This time the tears were because of the pain due to the shots and the despair I was starting to feel.  How long was this going to go on?  Would I have to deal with this for the rest of my life?  Will I eventually no longer be able to hide the bald spots?

Joint Pain

About a year later, I was STILL getting new bald spots despite the fact that I have been avoiding the allergens and I was STILL getting painful shots in my scalp every 6 weeks.  The hair would grow back but then new spots would appear.

I also started having pain in my right big toe and both of my hips.  My neck hurt all the time but more so in the morning so I kept thinking that I slept on it wrong.  I went to the chiropractor and spent a fortune on pillows that promised me a good night’s rest.  When the chiropractor checked out my hip, he told me that I have a swollen bursa.  Great.  Now I have Bursitis…like my grandmother had.  Damn, aging sucks ass!  He recommended ice packs and it really did help the pain a lot.  I also went for regular adjustments for my neck and say whatever you want about chiropractors but I SWEAR by mine!!!  It did help my neck feel so much better but I still woke up every day with a splitting headache and neck pain which usually wore off by early afternoon.

But the damned toe!  It kept locking up on me.  I never realized how much I need that damn thing to drive and walk until it would lock up.  And the pain?  Holy hell, it is just a toe!  Why does it hurt so bad???

I Wasn’t Convinced

After about a year and a half since the start of all of this, I decided to talk to my primary physician about it.  He asked me what has been going on.

“I have Lupus”

“Why do you think you have Lupus?”

“I have this rash all over my chest and back, I have a HOLE next to my ear, my hair is falling out, my hips hurt all the time, my neck hurts, and I have headaches and severe neck pain in the mornings.  Oh yeah…AND (if that all isn’t enough), my aunt died of Lupus.  My sister has Psoriasis, my mom had Scleroderma and I was told I have Alopecia.  Autoimmune runs in the immediate family.  AND MY TOE HURTS!!!!!”

“Your toe hurts?”

“I know…it sounds minor but it REALLY hurts!”

I told him that the dermatologist diagnosed me with allergies and Alopecia and the chiropractor diagnosed me with Bursitis.  He looked at my rash, my toe, and the HOLE in my skin near my ear.  He said he didn’t think I had Lupus but he ordered an ANA test.

“Now don’t be alarmed if it comes back positive.  A positive ANA test doesn’t always mean you have Lupus.”

The test came back negative.  He confirmed that I had Alopecia and Bursitis and added arthritis in the toe to the pot.

He told me to continue my treatments with the dermatologist and the chiropractor and to take Ibuprofen for the toe pain and to get good shoes.

Still Status Quo

Two year later (and still getting injections every 6 weeks), having no change in my symptoms, my dermatologist sent me for a complete blood work-up.  She checked everything, including hormone levels, thyroid function, and even ordered another ANA.

The results?

“You are deficient in vitamin D.  That doesn’t explain any of your symptoms but you need to take Vitamin D supplements.”

Fanfuckingtastic.

And so it went.  Another 2 years of head shots (only not the glamorous ones), bursitis, arthritis, skin lesions, expensive shampoos, lotions, and foams with steroids.  But at least I didn’t have Lupus!!!

Exhaustion

During the summer of 2009, I started to get incredibly tired.  This was the Tired-Zilla.  I would walk outside all energetic and gung-ho to work in the yard and literally 5 minutes later, I was crawling inside, gasping for air.  Too tired to even walk or breathe!  I thought, “Shit, Nicki!  You really have to get to the gym!  You are a lazy douche!”  I remember walking in the sun on campus one day and feeling such instant fatigue that I seriously considered laying on the sidewalk to take a nap.  My body just fizzled out on me.  I told myself that with a life that included crazy and long hours of studying, no exercise, shitty diet, and smoking, I have no reason to be surprised.  But it wasn’t JUST tired.  It was COMPLETE PHYSICAL EXHAUSTION and it came on so suddenly.  Fine one minute, crawling and gasping the next.

“You’re Depressed!”

I spent that ENTIRE summer in my bedroom.  I felt happy and I enjoyed watching TV, cross-stitching, drawing, painting, and being around my family…as long as all of that could be accomplished in my bedroom.  Most of it was.  I have the paint stains on my carpet to prove it.  But my family didn’t understand why I was hiding in my bedroom all the time.  My husband decided it was time to set me straight.

“The kids and I think you are depressed.”

“I’m not depressed.  I am tired.”

“That is what all depressed people say because they are too depressed to know they are depressed.”

“I am a psych major.  I know depression when I see it!  I am NOT depressed!!  I am physically fucking exhausted!  I am telling you that there is something physically wrong with me!  THAT may be making me depressed…the fact that I am too exhausted to get out of bed…BUT I AM SICK, NOT DEPRESSED!!”

“Depression IS a sickness.”

“Fuck off.”

“You are in denial about your depression.”

“Shut up.”

Back for more shots in the skull from the dermatologist.  Only this visit was different.

“I want to do a biopsy on these two little guys.”

“Why?  Do you think I have cancer?”

“No.  I want to see if it is Lupus.”

“Didn’t we rule out Lupus like 4 times now??”

“We never did a biopsy.  You had 2 negative ANA’s but a negative doesn’t always mean you don’t have it.”

Well what the fuck???  If a positive isn’t always positive and a negative isn’t always negative then why do we have this good-for-nothing test and why didn’t anyone tell me a negative isn’t always negative TWO YEARS AGO?!

“Okay.  Should I schedule the biopsy when I pay?”

“Lay down.”

Crap.  I wasn’t expecting to have my skin sliced, cauterized, and sewn today but sure, no problem!

I waited 8 days to get the results.  Eight. Long. Days.

“You Have Lupus….and Sjogren’s Syndrome.”

When I went back to the dermatologist, she told me the news that I have known since the first day I walked into that office 4 years prior.  I have Lupus.  I will say that the Sjogren’s was a nice added surprise.  Go me!  She told me I definitely had Discoid Lupus and Sub-Acute Cutaneous Lupus.  She didn’t think I had Systemic Lupus but I need to see a Rheumatologist.

He confirmed her diagnosis.  (“I TOLD YOU I WAS SICK, CHRIS!!!!)  Luckily, it wasn’t systemic…at the time.  Last year, my doc told me it has progressed and is now systemic.

Finally hearing that diagnosis was bitter-sweet as you can imagine.  I was THRILLED that 1) I finally had an answer and 2) that answer wasn’t “It’s all in your head.”  I was so excited that my doctor told me that although there isn’t a cure, there are ways to treat the symptoms.  I left the doctor’s office sort of happy.  Then it started to really sink in.

I HAVE LUPUS.  Oh yeah….and Sjogren’s.

For information about Lupus, visit The Lupus Foundation of America.  You can also get info from the Mayo Clinic’s webpage HERE.

May 14, 2012 | Categories: Alopecia, Autoimmune Disorders, Lupus, Sickness | Tags: Alopecia, autoimmune, Lupus, Lupus Arthritis, Lupus Diagnosis, Lupus Signs and Symptoms, Sickness | 1 Comment »