Thanks to the incredible heat we had last week and the stress I have been under the past couple months, I am in a doozie of a flair-up. My symptoms are not nearly as bad as they could be and I thank God for that every day. When I read blogs of fellow Lupus…?…onians? I feel like I am acting like such a baby for complaining at all. But, all I have are my own experiences to compare things to and this week has been tough.
On a good note, this entry isn’t going to be full of complaints. Complaints like how my back hurts so bad that it feels like there are knives going in my shoulder blades. Or complaints like I think I pulled an eye muscle from trying to look around because it seems my neck has turned to stone. Or complaints about how more hair is in the tub when I wash my hair or how I have 3…no 5 new lesions on my neck, chest, and face that make me look like I am battling puberty all over again. Complaints like how I can’t really hit the brakes in my truck because my feet are in too much pain or how I can’t carry anything because while my neck was turning to stone, my arms and legs were turning into spaghetti. I also won’t complain about how my hip has been having this amazingly painful electric shock thing going on and I feel like I am being intermittently tasered. Or how my GI track feels like it is on a loopy roller coaster and I am seriously considering seeing if they make Pull-Ups in my size. I will only buy them if they have Looney Toons characters on them though. Because without them, they are just diapers for big people.
Nope! You won’t have to read about any of that!! You are welcome.
Instead, I am going to tell you about how I managed to become mobile yesterday despite the pain.
I remembered the day my doctor quoted Newton’s First Law of Motion to me.
My doctor told me that people with chronic pain get themselves in a vicious cycle of which I need to be very mindful.
Onset of pain leads to decreased movement which leads to increase in stiffening of the joints and even more decrease in movement which leads to even more pain and so on and so forth until we turn into a big pile of hurting concrete. Okay, the concrete was my imagination…he didn’t say that.
So yesterday, despite the pain I was in, despite the lack of strength in my body, despite the fact that my joints seemed fused together, I picked up some dumbbells. I did a few bench presses with a light weight. I did some stiff-legged dead lifts even though it felt like my elbows were going to pop. I did 50 squats without holding any weights and I did 12 minutes on the elliptical. The workout was NOTHING compared to what I can do on a good day and it seemed like a waste of time while I was doing it. When I was done, I was 100% exhausted.
My neck moved!!!!! For the rest of the day, I was able to turn my head from side to side without pain. Some discomfort but no pain! It was totally worth it!
I decided yesterday that I need to do this every day. I need to do SOMETHING every day to stay moving. Even if it is just 5 minutes on the elliptical and nothing more. No matter how tired I feel or how much I hurt, I need to keep moving.
And I need to accept that the goal of my workouts is no longer to loose weight and get ripped. My goal is to stay mobile and not turn to stone. That makes me sad but it is a reality and one I am willing to accept.
- May is Lupus Awareness Month! (redefininggood.wordpress.com)
- Lupus Shoes (thenlistblog.com)
- upper left back lupus (duanesnodgrass1.typepad.com)
- Lupus Awareness Month (lohnniecakes.wordpress.com)
- Depression and lupus (butterflywarrior.typepad.com)
- Lupus and autoimmunity in 2 minutes (lupuschronicles.com)
- Lupus: My Blessing In Disguise (thenlistblog.com)
- Lupus Symptoms In Women & Coping Tips (e-prescribe.biz)
- Easy Ways To Keep Your Lupus Symptoms Under Control (e-prescribe.biz)
- Excuse me Lupus is real (butterflywarrior.typepad.com)
- Nutritional Diet For Lupus (e-prescribe.biz)
- My Self Esteem (butterflywarrior.typepad.com)
- Top 5 Reasons I Write About Lupus (Day 4 of #HAWMC) (butterflylessons.com)
- Lupus and a letter to my younger self (lupusadventurebetweenthelines.wordpress.com)
- Lupus Shoes (lupuschronicles.com)
- Reasons I Have Cried This Weekend And Will Cry Again Today; A Top 5 List (thenlistblog.com)
NO, NOT THOSE HAIRS! Get your mind out of the gutter!!
I have ALWAYS had a full head of hair. My mother had a natural afro.
One day (while my hair was short, mind you) I got brave and posted to Facebook what my hair looks like when I put a brush to it.
This is why I LOVED Gilda Radner!!! We had so much in common.
About a year after I was diagnosed with Lupus, my sister was diagnosed with Esophageal Cancer. Understandably, she was concerned about losing her hair.
I felt so useless during the time she was in treatment for cancer.
I couldn’t turn back the clock.
I couldn’t take the cancer out of her body.
I couldn’t endure the treatments for her.
I COULD pray for her and I PRAYED MY GUTS OUT.
(Thank you, Heavenly Father, for hearing and answering my prayers!!!)
And I could help her feel less alone.
When she lost her hair, I had her shave my head too.
I was surprised at how much I LOVED not having hair to deal with every day. It was incredibly liberating!!
Because of my Lupus, I already had plenty of bald spots and my scalp was polka-dotted. If it wasn’t for this issue, I would have stayed bald longer and I would have gone in public without my caps and scarves on.
I think Sinead O’Connor had something going there!
And now that I have THIS song in my head, you can too. You are welcome.
This post is for The 30 Days of Writing Challenge hosted by We Work For Cheese. Today’s prompt is “The Short Hairs.”
- Hair With a Plan (hartlove.wordpress.com)
- Beauty Hacker: A Genius Tip for Pinning Short Hair Up (theblush.com)
- Becoming an Esophageal Cancer Survivor (everydayhealth.com)
- Types of Esophageal Cancer (everydayhealth.com)
- Detecting Esophageal Cancer (everydayhealth.com)
I have been doing some thinking and I have come to the conclusion that none of my doctors know what the hell they are talking about. Luckily, I do know a thing or three about medicine. I have decided that I do NOT have Lupus (yayyy!!!). I am a vampire. I always suspected it because the sun is my kryptonite and I used to joke that my next coffee table will be a coffin. But now, I am sure of it. How you ask?
Well, I did some research on the Random Facts website (http://facts.randomhistory.com/2009/05/02_vampires.html). Here are the top 14 reasons that I am a vampire.
#14) A group a vampires has variously been called a clutch, brood, coven, pack, or a clan
I often refer to myself as the “leader of my pack” and my dog totally sees me as such.
#13) Probably the most famous vampire of all time, Count Dracula, quoted Deuteronomy 12:23: “The blood is the life.
I too, have quoted Deuteronomy…just not 12:23
#12) The Muppet vampire, Count von Count from Sesame Street, is based on actual vampire myth. One way to supposedly deter a vampire is to throw seeds (usually mustard) outside a door or place fishing net outside a window. Vampires are compelled to count the seeds or the holes in the net, delaying them until the sun comes up.
The Count was my favorite muppet character!!! I loved him way more than I loved Grover and I want to bash Elmo’s face in.
#11) Documented medical disorders that people accused of being a vampire may have suffered from include haematodipsia, which is a sexual thirst for blood, and hemeralopia or day blindness. Anemia (“bloodlessness”) was often mistaken for a symptom of a vampire attack
I have not developed a sexual thirst for blood (yet. I am a relatively young vampire…only 40) but I am anemic and my doctor always tells me that I need more red blood (cells).
#10) One of the most famous “true vampires” was Countess Elizabeth Bathory (1560-1614) who was accused of biting the flesh of girls while torturing them and bathing in their blood to retain her youthful beauty. She was by all accounts a very attractive woman.
I too try to retain my youthful beauty and I AM by all accounts a very attractive woman. Well, at least by my accounts and my boy dog who has a major Oedipus Complex.
#9) A vampire supposedly has control over the animal world and can turn into a bat, rat, owl, moth, fox, or wolf.
I have within my house or my yard (and I shit you not) 3 dogs, 2 tree frogs, 2 fish in an aquarium, 4 Koi in my pond, a baby bunny, a fox, a woodchuck, skunks, a few chipmunks, squirrels, ducks, deer, birds galore, the occasional wild turkey, and a mangy coyote. I have also had pet mice, hamsters, geckos, a parakeet, a cockateil, and a guinea pig.
#8) Joseph Sheridan Le Fany’s gothic 1872 novella about a female vampire, “Carmilla,” is considered the prototype for female and lesbian vampires and greatly influenced Bram Stoker’s own Dracula. In the story, Carmilla is eventually discovered as a vampire and, true to folklore remedies, she is staked in her blood-filled coffin, beheaded, and cremated.
My middle name is Carmela. Close enough!
#7) After the advent of Christianity, methods of repelling vampires began to include holy water, crucifixes, and Eucharist wafers. These methods were usually not fatal to the vampire, and their effectiveness depended on the belief of the user.
Although I was baptized Catholic, I never received Communion. Additionally, I am not Catholic anymore (independent Christian) and I do not believe the Crucifix is a proper symbol of Christianity.
#6) That sunlight can kill vampires seems to be a modern invention, perhaps started by the U.S. government to scare superstitious guerrillas in the Philippines in the 1950s. While sunlight can be used by vampires to kill other vampires, as in Ann Rice’s popular novel Interview with a Vampire, other vampires such as Lord Ruthven and Varney were able to walk in daylight.
I am able to walk in daylight but too much sun will kill me.
#5) The legend that vampires must sleep in coffins probably arose from reports of gravediggers and morticians who described corpses suddenly sitting up in their graves or coffins. This eerie phenomenon could be caused by the decomposing process.
I sit up suddenly while I am sleeping. Especially if I have to pee or I hear a noise.
#4) Hollywood vampires are typically pale, aristocratic, very old, need their native soil, are supernaturally beautiful, and usually need to be bitten to become a vampire.
I am freakishly pale for an Italian and I don’t tan; I burn. I feel very old, I have lived in the same town my entire life and I am even supernaturally beautiful. Well, I think I am kinda good looking and although my beauty may not be SUPERnatural, it is UNnatural. I had a tummy tuck.
#3) The most popular vampire in children’s fiction in recent years had been Bunnicula, the cute little rabbit that lives a happy existence as a vegetarian vampire.
PEETA???? For those of you who do not know, Peeta is the baby bunny I rescued, raised for 12 days, and I believe is the one living in my front yard now.
#2) A rare disease called porphyria (also called the “vampire” or “Dracula” disease) causes vampire-like symptoms, such as an extreme sensitivity to sunlight and sometimes hairiness. In extreme cases, teeth might be stained reddish brown, and eventually the patient may go mad.
I have extreme sensitivity to sunlight, the hair ON MY HEAD is very thick (even with the occasional bald spots), my teeth are stained a bit…always thought that was coffee but now I know better…and I am ALWAYS going mad. Hence, the Xanax.
And the #1 reason I am a vampire…
I had my fire department physical last night. The woman told me, “Your eyesight sucks but your hearing is incredible. I bet nothing gets past you! I can imagine that even the slightest sounds drive you nuts (YUPPP!!!). YOU HAVE THE EYES AND EARS OF A BAT!”
And now that I want to watch this movie again, you can too!
- Famous Fangs: Tales of Our Favorite Vampires (livescience.com)
- ‘Vampire’ corpses found in Bulgaria (thesun.co.uk)
- VAMPIRE SKELETONS: Shocking Discovery Made in Bulgaria (PHOTO) (blippitt.com)
- Anno Dracula ~ The Best Vampire Novel In Three Decades? (lilywight.com)
- V is for Vampires (nagzilla.wordpress.com)
- Bloodsucker Collection: Twilight, Dracula, True Blood, and The Vampire Diaries (digitalproductsonline.typepad.com)
- Opinion: Death, Sex and Vampires (nytimes.com)
- Will Hill’s top 10 vampires (guardian.co.uk)
- Why are so many vampire stories so weak? [Horror] (io9.com)
- ‘Vampire’ corpses found in Bulgaria (thesun.co.uk)
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.
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?
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.
“You are deficient in vitamin D. That doesn’t explain any of your symptoms but you need to take Vitamin D supplements.”
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!!!
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.
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.”
“You are in denial about your depression.”
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?”
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.