Emotional Support Penis

I’m not sure when I realized that I needed my husband to validate my concerns when I see a doctor, but sweet baby Jeebus, do I ever. Especially on first-time visits.

I thought that fully-formed words leaving my mouth in an acceptable order at an audible volume met the sufficient requirements of communicating clearly. I had no idea that I was missing an integral element to actually be heard.

A penis. I was missing a penis.

You see, quite often when a woman goes alone to see a physician for health issues, chronic or not, there is an underlying perception that she is…how can I put this delicately?

From the Classical Era of Ancient Greece (and let’s be honest, probably long before that), women have been viewed to hold hysterical tendencies. Hysteria was literally thought to be the product of a “wandering womb”(1).

Let that sink in for a moment–if a woman had any complaint, whether physical, emotional, or mental, it was believed to be because her uterus was taking a stroll. If you can’t actually hear me rolling my eyes, rest assured, I am.

The unsaid flip side to this mindset was that women were unable to suffer like men, that certainly they had to be exaggerating, or confused, or flat-out just seeking attention when they presented complaints.

Lest you think this is a man-hatin’ slugfest, I should mention that female physicians generally aren’t any better. In fact, there can be the additional issue of female physicians looking down on their female patients for seeking help instead of toughing it out; “manning up”, so to speak.

For instance, there was the rheumatologist that told me that I needed to “pull myself together” when I tried to explain that I had had to withdraw from college and was finding it increasingly difficult to work even part-time due to pain and fatigue. Because she had been able to work her way through med school, she saw no reason why I couldn’t work and/or complete my undergraduate degree without complaint; my concerns were completely dismissed. There was palatable contempt because I was exhibiting a negative female stereotype–weakness–and I was making the rest of womankind look bad.

The hysteria mentality is embedded in medical culture, much to the detriment of women the world over. I asked a couple of my chronic pain social media groups if they had ever experienced misogyny with medical providers, and within half an hour, I had received 20 incidents that made me positively ragey. Less than 24 hours later, there were 80. EIGHTY. And none of them were any less infuriating. Here are a few examples:

“My whole life. And in contrast- my dad went in with an almost identical problem, got a diagnosis and a fix almost immediately.
I have been anemic my whole entire life. Complained of being sleepy and cold. I was told I have heavy periods and eat red meat (I am allergic). I quit leaving the house out of fear of being cold. I got dark circles under my eyes from severe anemia at age 10.
I napped every single day of my school years. My joints creak like an old wooden door. I’m tiny and underweight so I must be fine.
I got turned away from so many doctors because girls are just anemic sometimes (it was before I got periods and continued after my periods were stopped with medication by OB/GYN because she said I could die with iron that low).  I’m fine I was told for 17 years. I was never fine. I have severe Crohn’s and it’s suspected I have for over 20 years. I complained to anyone who would listen and no one believed that I could be sick. Crohn’s almost killed me from internal bleeding. That’s why I was anemic. It took a team of 6 great (all female) doctors to realize women and girls aren’t ‘just anemic sometimes’. I hate every doctor that told me I was too skinny to be sick and that I was making it up for attention.”

“I was pretty much told that I was making it up and should look into seeking help for possible Munchhausen when I went to the ER for severe pain in my abdomen. The male doctor told me that it was probably just bad cramps and that I should get used to it. I didn’t tell anyone about the pain for the next year until my mom caught me crying from it, which she knows is a big red flag because I’m used to a certain level of constant pain. It was stage 3 endometriosis and and what was now a golf ball sized cyst that had cause pretty severe uterine torsion.”

“I have PCOS and went to the ER with shooting pains in my legs and they said it was just cramps. My first OB/GYN thought I was just saying I had pains to get birth control and then found cysts and an irregular shaped uterus.”

“I had an ovarian cyst that had hurt constantly for three months and the male doctor told me it was probably my period. When I asked “you think the constant, one sided pain is my period?” he sighed super heavily and was like “so you want a CT or something?” Then, my insurance called to tell me they were denying the CT and when I asked why, they said they’d been given insufficient information on why I needed it. Apparently the doctor had written on the order ‘unnecessary; patient request’.”

“Boiled down my breathing problems to anxiety…nope. I had food allergies.”

“My GI doctor called me ‘a precious little girl’ when I had to go in for an ultrasound and sonogram for my insides. He then made fun of the amount of anxiety medications I’m on, stating I had ‘white woman’s disease’ and said he would’ve diagnosed me with hysteria if he were my GP (seriously what year is this?) my issues/complaints fell on deaf ears. When I stated I wanted a second opinion, I received a letter stating that I was no longer allowed at that GI practice, regardless of which doctor I was to see. It was a really unfortunate time and I definitely was dismissed as just being a ‘hysterical woman’.”

” I had a broken neck misdiagnosed as stress, LOL.”

“My gynecologist recommended I get the Mirena IUD, well, long story short, I hemorrhaged really badly as a result, to the point I was so anemic I was having difficulty breathing and was passing out. I wound up in the ER. I was explaining everything to the doctor there and, out of nowhere, this other doctor comes in to the room and starts listening to the tail end of my description (I guess because it’s a teaching hospital…hell if I know). He butts in, says, ‘If you’re that dramatic over having your period you should have a hysterectomy.’ Then he turned around and walked out. I just sat there stunned. Turns out I had bled so much I had to be given blood and a shit ton of iron. Thankfully, the damn IUD actually came out because I was bleeding so much.”

“I wound up having a hysterectomy at age 25 (and childless) for stage IV endometriosis (which means it was in other organs at that point, no longer just limited to my reproductive system). The reason it had progressed to stage IV is because I had been previously diagnosed as having IBS and anxiety by one doctor & ‘female complaint’ by another.”

“When I had horrible stomach pain and severe rectal bleeding as a 17 year old, my doctor sent me to stress therapy. I lost 1/5 of my body weight and got admitted to the hospital with a high fever before anyone believed I was sick, and got my Crohn’s diagnosis. (Doctor was female as well, which goes to show that misogyny is just that pervasive in medicine.)”

For the sake of my own sanity, I’ll limit myself to relaying only these experiences, but know beyond any doubt that I could write a full post just like this one about each and every woman that has had to deal with persistent medical issues. I think that I would be hard-pressed to find anywomen that haven’t felt disregarded by someone in the medical profession at some point.

It’s maddening that the presence of a penis at an appointment is the catalyst that leads to being taken at my word. Suddenly, my symptoms aren’t second-guessed, my mental status is not brought into question, and I’m not given a heavy sigh and asked if I’m sure I’m not exaggerating.

Having a physically intimidating husband escort me to visits doesn’t necessarily erase all problems, but I can guarantee you that Dr. Dick would never have been such an ass if I had been accompanied by my 6’4″ soldier. My husband’s mere presence conveys that at least one man believes that I’m worth being heard. Think of it as the medical equivalent of telling a creeper that you have a boyfriend–no matter what else you might say, the fact that you ‘belong’ to a man is what is actually heeded.

So, as infuriating as it is, I highly suggest women take a spouse/boyfriend/father/brother/male friend to, at the very least, the first appointment with a new doctor or when presenting a familiar doctor with new symptoms.

It’s up to you whether or not you make him wear an EMOTIONAL SUPPORT PENIS vest.

 

 

(1) Hysteria and the Wandering Womb-

https://academic.mu.edu/meissnerd/hysteria.html

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I Am Weary

I wish I had something witty and poignant to say, but I spent hours at the hospital today for MRIs and x-rays to appease new doctors, and I am weary.

Somewhere between being stuck, frozen and motionless in a loud tube and performing painful calisthenics in order to get accurate images, I realized that I have lost count of how many medical procedures I’ve complied with, both in the 16 years I’ve been dealing with lupus and the many years before that. I am just. so. weary.

I am weary of blood draws and blood work and lab tests and results that may or may not reflect the turmoil I’m experiencing within my traitorous body. I am weary of filling out paperwork that doesn’t allow nearly enough space for all of the medications and diseases and surgeries they’re so keen to know about.

I am weary of having been through so much that I forget to mention medications and diseases and surgeries, only to have office personnel and nurses and doctors look at me with incredulity, because who would forget taking a chemotherapy drug, or having fibromyalgia, or having their gallbladder removed?

I am weary of repeating myself over and over to both new providers and those that just don’t listen. How many times can I tell a nurse that I had a hysterectomy in 2013, only to have her ask me when my last period was or if I think I may be pregnant?

I am weary of being overcome with emotion and gratitude because a doctor doesn’t challenge my diagnoses and wants me to have a decent quality of life. I am weary that my bar has become so low.

I am weary of knowing that I fail the most important people in my life on a daily basis. I am weary that I cannot depend on myself for simplistic functions. I am weary that the most basic and undemanding joys in my life are unobtainable. I am weary that I don’t know when I will be able to do them again, if ever.

I am weary that pain and fatigue are my constant companions on the best of days.

I am weary of the fog that clouds my brain unbidden, preventing me from expressing myself adequately.

I am weary of the weight of knowing there is no end.

I am weary.

 

The Things Nightmares Are Made Of

Any Spoonie will tell you that having a good medical team is essential. Having a doctor–particularly a specialist–that is both knowledgeable and up to date on current studies and treatments AND genuinely empathetic is like finding a unicorn. A unicorn that farts rainbows and can slay Chuck Norris. I can say from my experiences as both a college student and military wife that has relocated often, they’re less common than Willy Wonka’s golden ticket and much, much more valuable.

Being in Colorado for 6 years (an eternity by military standards), I was fortunate enough to find a unicorn! I can’t gush enough about what a great rheumatology staff the University of Colorado at Anschutz has, and how very, very much I miss them.

Today was my first visit to my new facility here in Maryland, and while I’ve been dreading reorienting myself with new doctors, this morning was above and beyond any worse case scenario I’d feared; so much so that I’m filing a complaint against a rheumatologist I’ll refer to as “Dr. Dick”, and I think you’ll soon understand why.

But first, I have to explain the miracle that is Benlysta.

For science dorks, Benlysta is a human monoclonal antibody that was approved for the treatment of lupus by the U.S. Food and Drug Administration in 2011–the first drug designed specifically for lupus. This A monoclonal antibody is a type of protein made in the laboratory that is developed to find and attach to only one type of substance in the body. Benlysta is a human monoclonal antibody that specifically recognizes and blocks the biological activity of B-lymphocyte stimulator (BLyS), a naturally occurring protein. Elevated levels of BLyS prolong the survival of B cells which can contribute to the production of autoantibodies–antibodies that target the body’s own tissues. Studies have shown that Benlysta can reduce autoantibody levels and help control autoimmune disease activity. (1)

For laymen dorks, I can say my personal experience with Benlysta has been amazing. Of course there are risks associated with Benlysta, such as an increased vulnerability to infection and a serious risk of severe depression; it’s not for everyone. As for me, while my baseline of normality is still exponentially lower than it was pre-lupus, I can confidently say my quality of life has drastically improved. The fact that I was able to relocate our family 1,700 miles across the country by myself with only the loss of a stinker of a cat that shrugged off her harness and collar (Sorry, Little Grey. We’re still hoping we’ll find you!) should be testimony enough.

The thing about the efficacy of Benlysta, though, is that after the starting doses, you need infusions every 4 weeks to keep levels sufficient. Exactly every 4 weeks. Infusion centers will schedule up to a year in advance to make sure dosages are received on time.

Some people feel like they’re dragging by week 3, which I have been fortunate to not experience, but my most recent infusion was due 2 weeks ago, so I’m now 6 weeks removed and feeling it hard. It was an unavoidable delay, but every health care coordinator that I’ve spoken with assured me that the medical facilities available here would mean the initial appointment with my new primary care manager (think Family Practice doctor), my new rheumatologist, and the infusion itself would happen on the same day.

However, some doctors, like Dr. Dick, do not care about your experiences, your needs, your history, the opinions of other professionals, or common f***ing sense.

At this point I will confess that I went to the appointment as the living definition of hot mess. Since the Hot Blonde left for training in June, every ounce of energy has gone to caring for the Little Miss and Little Mister or untangling the clusterf*** that has been our cross-country move. As such, I need a haircut and color, a brow wax, a manicure, a pedicure, and a three-week coma to attain a semblance of my normal self. On top of that, the heat and humidity have wreaked havoc on my skin, leaving me with acne that would be embarrassing at 14, let alone 41.

I detest meeting new doctors like this, but I literally had no choice. At least I showered.

My visit with Dr. Dick was preceded by another doctor that chatted with me about my medical history. I ran through the lengthy lists of medications and surgeries and SLE-related infections that have since resolved. Typical. He slipped out to the hall and returned with Dr. Dick less than 5 minutes later. And lest you think I’m exaggerating, I opened a game of Candy Crush when First Doc left and didn’t have time to get through a level.

The first thing Dr. Dick said (without lab work or medical records to reference) was, “You don’t have SLE, you have fibromyalgia.” I immediately saw red, but I took a deep breath and patiently explained that, actually, I have both and it’s as much fun as it sounds. The next thing he said was that he wouldn’t be scheduling my infusion until after he’d had time to look over all of my records–so a couple of weeks.

Again, I calmly explained that I was already well past my infusion date, and that I need Benlysta to function. Little Miss and Little Mister were there with me. I gestured to them as exhibits A and B and explained the Hot Blonde (my husband) wouldn’t be home until late September, so they were completely dependent on me and I am completely dependent on Benlysta.

I explained that in the last 48 hours, I’d had no more than 5 or 6 hours of sleep because the pain in my muscles and joints is starting to get out of control, and not even THC is helping now. I explained that without the infusion, I’m much more likely to have a real, nasty, debilitating flare, and if that happens, I’m utterly screwed. (I’m conscientious of being accurate and brutally honest in self-reporting; neither exaggerating nor “toughing it out” helps your doctor to treat you.)

At my pleas for the simple courtesy of the continuation of a proven medication that I’d been taking for over a year, Dr. Dick scoffed and said there was no way that he was going to prescribe anything after just having met me. First Doc may as well have been wearing a leash and trying not to piddle on Dr. Dick’s feet.

I was quite proud of the fact that I did not shrink away and defer to Dr. Dick’s “expertise”, but instead firmly challenged him as to why. He wouldn’t give me a reason other than “he didn’t think I needed it”. I’m also quite proud I didn’t punch him in the throat.

To make things perfectly clear, Benlysta is not an opiate, opioid, or narcotic. (2) There is no chance for addiction. If I had never had it before, I would understand his reservations completely, but the worst that could possibly come from the appointment is that we’d have to go head-to-head about it at a later date. I said as much, but kept getting rebuffed with his same, lame excuse.

I told him he was being dismissive and obstinate, which in hindsight was probably not the thing to say to an older, white male, but that shoe fit like it was for Cinderella. I also wouldn’t stand for him mansplaining my own medical history to me, interrupting as civily as possible when I saw the glassy look of I-like-to-hear-myself-speak fall over his eyes. He wasn’t a fan.

I asked him bluntly– was he was going to wait until I was flaring to schedule the injection, or until I was actually in the hospital with organ involvement? He wasn’t a fan of that, either, but considering his only reasoning for not scheduling was “I DON’T WANNA, AND I’M ALWAYS RIGHT!”, I didn’t feel like my questions were exactly out of bounds.

When it became evident that he wasn’t going to change his mind, and just as evident that I was refusing to acquiesce to his authority, he said I could see another provider, which I jumped on before he’d finished his sentence. He seemed shocked that I’d forgo his wisdom for someone else, and quickly backpedaled, saying *it would take a couple of weeks to reschedule. I told him that I was able to see civilian providers without a referral, and he said *that wasn’t how it worked, I had to stay within the military system.

(Remember those 2 stated *facts.)

At that point Dr. Dick said he’d order blood work and he and First Doc left. I was seething, but it was important to me to keep a cool head in front of the Littles, as I’ve been struggling to show them that rational, composed communication is paramount to being a good human being. It was shortly after that I heard Dr. Dick–through the closed door–mocking me!

Again, in case you may think I was mistaken or just being sensitive, Dr. Dick was quoting my concerns verbatim in a sing-songy voice.

“I’ve only had 5 hours of sleep in the last 48 hours! I drove 1,700 miles! I’m the only one that can take care of these kids!”

I. WAS. FURIOUS.

I threw the door open, and it wasn’t that he was even standing just outside of it–he was in another office! It was then that I finally lost my s***.

I yelled, “I CAN HEAR YOU!”, and that didn’t stop him! I stormed toward his voice and yelled it again, confronting his unprofessional and inappropriate behavior.

Anyone that is remotely familiar with healthcare is aware of HIPAA, the Health Insurance Portability and Accountability Act; there are serious consequences to relaying private information (3). You know, like the ones Dr. Dick was loudly stating to an uninvolved coworker with the door open to several other offices of likewise uninvolved coworkers.

I went back to my exam room, shaking with anger (and the unexplained tremors that Dr. Dick wouldn’t even acknowledge, but that’s probably going to be its own blog post). When he came in, he was alone, and I reiterated my disgust at his behavior. To his credit, he recognized that he was wrong, and apologized, but the fact that there were no witnesses outside of a 6-year old, a 7-year old, and the object of his ridicule made me skeptical of his sincerity.

Oh, and the aforementioned *facts? Total bulls***. Both of his scare-tactics to try and cow me to his opinion were outright lies, which was affirmed in less than an hour by an administrative advocate.

The silver lining to this polished turd of a stormcloud is that I do have a great administrative network in my corner. As soon as I relayed what had happened, I had more support than a whalebone corset, and sometimes that comfort is enough to keep you fighting the next round.

 

References:

(1) Benlysta: What You Need to Know

(2) Opiate, Opioid, Narcotic- What’s the Difference?

(3) Summary of the HIPAA Privacy Rule

Me Too

If you’re on social media at all, you should be aware of a recent trend- #MeToo. On Facebook, it’s a status that generally looks like this:

On Twitter, it’s likely a personal account of being harassed or assaulted, like this:

My Me Too happened when I was in the ninth grade.

Saturday night. Ten-ish. Orem, Utah. My cousin, Rob (one year older, one grade ahead), and I were walking back from a stag dance at our high school, which was less than a mile away from our homes. Just outside of our neighborhood, we saw two guys moving in our direction and they couldn’t be avoided. Rob said he had a class with them; they were dirtbags and they might be trouble. He said hello and we tried to keep moving, but they blocked our path. One of them asked Rob if I was his girlfriend. When Rob told them, “No, she’s my cousin.”, we tried again to skirt around them. They sneered and crowded in closer. One of them rubbed his crotch and said something to the effect of taking turns with me behind a nearby shrub for some “fun”.

I froze.

I still remember wearing long, baggy white shorts and a GAP blouse. I still remember feeling naked and exposed.

One of them grabbed for me, but Rob had the wherewithal to seize my arm and run in the opposite direction. We pounded and screamed on a stranger’s front door. The dirtbags ran away.

When I got home, my mom called the police. I was armed with Rob’s yearbook. I could give the police faces, names, and a witness. The male police officer that showed up at my home wouldn’t look at the yearbook; he never asked to talk to Rob.

Instead he asked me why I was out so late.

My Me Too happened five years later.

I was walking in downtown Salt Lake City on my way to meet friends and go dancing. I passed a car with a passenger in the driver’s seat. He waved his arms frantically to get my attention, then he aimed his erect penis in my direction and began to masturbate. I hurried into the relative safety of the club. I was unable to voice what I had witnessed.

I didn’t believe anything would happen even if I could.

My Me too happened shortly after that.

I was in my apartment, making out  with a boy I thought I was in love with. In response to my physical boundaries that didn’t include sex, he said he “wanted to rape me”  I laughed it off, saying something like, “Ha, ha. You can’t rape the willing. Ha ha, ha…” while suffocating inside, knowing that if he truly decided to, I couldn’t stop him. He was bigger and stronger than I was.

He was a returned missionary for The Church of Jesus Christ of Latter-Day Saints, he wouldn’t really rape me…would he? (He didn’t, but he made the remark at least one more time.)

In addition to the “big” Me Toos, I could rattle off so many “little” ones- avoiding mosh pits or crowd surfing because I couldn’t stop men from grabbing my breasts and/or ass, being pawed at in a club when all I wanted was to do was dance with my friends, being accosted by creepers that would only leave me alone if I said I had a boyfriend- the list could go on forever. Off the top of my head, I can name over a dozen women and a handful of men that I know personally who have been raped. I consider myself fortunate that I’m not numbered among them, but it sickening that this is absolutely routine in the life of a female.

 

It’s in the Job Description, Lady

School is starting again, with the little Miss and little Mister starting Kindergarten and First Grade, respectively. I’m excited for what lies in the school year ahead (I may or may not have lost track of my happy dances one does when all of their children are in all-day school). I’m also apprehensive for what my kids are inevitably going to encounter- conflicts with friends, hurt feelings- the kinds of things that are inescapable through the human experience.

If that sounds cynical or foreboding when referencing younger children, let me rewind to their last school year:

When the little Miss was four, quickly rounding to five; she was in her second year of preschool. She’d had several years of Sunday School at church, time with other kids in child watch at the gym, and a myriad of play dates. What I’m trying to say is that she was/is very sociable. She makes friends easily and laughs freely. Even though I’m completely biased as her mom, I can confidently say she is a joy.

I take it seriously when her feelings are hurt.

During our usual after-school recap conversation one day, she was uncharacteristically quiet from the back seat. This is a girl that talks herself to sleep, so silence is significant. When I asked her what was wrong, she said that GIRL wouldn’t play with her anymore. Even though the Miss was friends with all of the boys and girls in her class, GIRL was one of her closest friends. Delving deeper, we had the back and forth conversation of potential solutions from me (I’ll bet that you and GIRL and BOY could all play together.) and counters from the Miss (No, GIRL said that BOY was her new friend, and when she gets new friends, she doesn’t play with her old friends.).

As agonizing as it was for me to hear the hurt in her voice, I was also proud (so proud!) that for every possible conflict resolution I proposed, she had already used it on her own; it was impressive and mature coming from a four year-old. I finally asked the Miss if she’d like me to talk to GIRL’s MOM*, and relief flooded her face.

*I wouldn’t have offered if the Miss was fourteen, but again, she was four.

The next day after MOM and I signed our kids into class and were out of range from little ears, I explained what was happening, and that Scarlet was hurt because she thought GIRL was her friend.

The response, you ask?

MOM- “Well, she’d better get used to it because girls are mean, and it’s only going to get worse as they get older.”

That was where the conversation ended, because my jaw hit the floor so hard I was stunned into silence. Honestly, where do you go from there?

Despite my disappointment in MOM’s dismissal of the situation, the Miss and I were able to salvage a lot of good from the experience. The Miss’ teacher was amazing; she redoubled her efforts to promote healthy friendship qualities during class, and helped me to steer the Miss toward other friends that acted kinder. Talking with the Miss after school each day, I was able to identify the good qualities her other friends were exhibiting and juxtapose them against GIRL’s actions. We talked about how the different behaviors made her feel, and whether or not she would want to make others feel that way. You could almost hear the lessons clicking in place, and she’s put them to use several times since.

Within a few days, GIRL was playing with the Miss again, and MOM made a point of observing, “See? They’re fine.” I was less convinced, but I was also struggling to keep my inner Mama Bear in check and remember that the little girl that hurt my little girl was still a little girl.

Before the reconciliation I made it clear to the Miss that she should always be kind, but if GIRL acted maliciously, it was up to the Miss to tell her that GIRL’s actions were hurting her feelings and that she was going to play with other friends until GIRL made better choices. The Miss only had to do that once or twice before GIRL cut the crap and acted like a better friend, which empowered the Miss with 1- the knowledge that her words have power and 2- she is brave enough to stand up for herself. (Have I mentioned that I’m proud of her?)

Enough time has passed that I can look at the situation without acrimony/annoyance/rage, and I can’t help but feel a little sorry for MOM and GIRL. GIRL lost the chance for a first-hand lesson about empathy and how our words and actions have consequences. MOM missed a window of opportunity to impart a valuable life lesson while the circumstances were still fresh. I hate to think that MOM didn’t bother to correct the behavior because she doesn’t think her words would have enough of an impact on her kid to even try, because that would be tragic.

I confidently speak for every parent that has ever and will ever live with this announcement:

Everything we say to our kids, from “wash your hands” to “don’t be a dick”, feels unheard, if not blatantly ignored. Despite that, the important things- the really important things, like lessons defining character and kindness- need to be repeated again and again. And again. And yet again. Those teachings need to be etched indelibly in their little minds to give them a better likelihood that they’ll grow into good adults.

So I’m sorry if the effort seems futile, but molding your children into good human beings is in the job description, lady. Put forth the effort, because we’re all counting on you to raise a kid that will be a betterment to society.

What Not to Say to Someone with Lupus

Many people do not understand what lupus is, and that’s okay; it’s a sneaky, dastardly malady.

My sister should be 52 today, and even after watching her lose her 20-year battle with it, and suffering its effects myself  for over a decade, I am still learning new things about the disease.

If you really want to know more about the particulars of how lupus works, you’re obviously online, use your Google-fu.

However, if you’re looking to communicate with someone suffering from lupus, here are a few quick pointers to keep you from sounding like an ignorant/insensitive jackass:

1. You’re still sick?

Yes, I’m still sick. Lupus isn’t something that you can clear up with a quick dose of penicillin, unlike your mom’s gonorrhea. I’m still sick, and I’ll be sick until the day that I die. God willing, THAT will be relatively quick and not involve organ transplants or long, drawn out hospital stays that can only serve to traumatize my kids.

2. You’re sick again?

Actually, I’m sick still. (See answer #1)When you see me and I seem “not sick”, I’m either putting on a really good game face, or I’m between flares. Flares are the time period when the “normal” pains like migraine-level headaches and arthritic joints I deal with every day mutate, grow, and basically make me beg for death.

3. At least it’s not cancer!

Long answer: You’re right, lupus is not cancer. Cancer can be fatal. Wait, so can lupus. Cancer requires toxic drugs like chemo to keep the disease in check. Oh wait, so does lupus. Cancer guarantees that you will never have a completely pain-free day again. Wait, wait, wait- that’s not cancer, that’s just lupus.

Short answer: F*** you, you f***ing f***. Go to hell and stay there until you grow a f***ing brain. And then stay there another week. I hear they have great barbecue, which is better than you deserve.

4. God has a plan.

I believe in a loving God, but I also believe that life throws some really s***ty curve balls in the direction of unsuspecting humans when it thinks it will be the most entertaining. God grants me strength and has surrounded me with amazing family and friends that have helped lead me through my darkest hours, but I don’t believe He gave me lupus as some sort of a Master Plan. Also, see short answer #3.

5. My roommate/cousin/dog walker has lupus, so I know exactly how you feel.

See short answer #3, because no, you f***ing DO NOT.

6. I’m sure you’ll feel better soon.

No, actually, I won’t. Again, life-long affliction. Thanks for the reminder, because sometimes I forget why I take handfuls of pills multiple times a day.

This list is by no means exhaustive, so if you feel you absolutely must comment on how someone is dealing with lupus, take a long pause and think before you speak. Better yet, keep your uninformed thoughts to yourself and don’t comment at all.

 

Find Your Tribe

For better or worse, May is Lupus Awareness Month. Purple ribbons abound and sufferers are patted on the head and given extra “bless your heart”s.

I honestly couldn’t tell you whether or not that is an improvement over complete ignorance.

All of us dealing with lupus, whether we are the patients or the families, friends, and/or caretakers of the suffering, know how isolating the disease can be. Those of us afflicted with lupus lose their careers, their plans, their very future. Those who love us lose the people that we were and all of the things we may have been. It is easy for anyone faced with these losses to lose patience, to lose hope.

Though any light at the end of the tunnel may feel like an oncoming train, there is much illumination to be had by turning to support groups. Notwithstanding the potential benefit, it cannot be stressed enough that all groups are not created equal. In my experience, crummy lupus support groups consist of these characteristics:

  • Existing only to complain. These factions are comprised of people that refuse to see the bright side of any situation, ever. They are offended by humor. How can anyone laugh while they are suffering? Furthermore, they refuse to make any adjustments that could improve their quality of life. It is completely normal and necessary to bemoan the daily pain and fatigue and loss, but it is corrosive to restrict your thoughts and offerings to those tragedies.
  • Existing to market miracle cures. I’ve seen these run by doctors, and on a scale of moral repugnance, I rank that on the same level as drowning kittens. The most vile in this category also try to rope desperate people into selling snake oil to other desperate people.
  • Existing for the pursuit to expose conspiracies. Lupus is not caused by vapor trails, vaccines, or the Illuminati. I concede that lupus and its origins are baffling at best, but there’s nothing to be gained by worrying about fictional demons. If you find yourself in this group, RUN.
  • Existing to ask for handouts. It should come as no surprise that lupies often struggle with financial concerns; the physical inability to work doubled with the high cost of drugs, doctors, and testing don’t correlate with a healthy checkbook. However, I find it inappropriate to solicit monetary support those that are likely in the same economic position.
  • Existing to shame you for your choices. Smoke weed for relief? You’re a vile hippy. Use prescription painkillers? You’re an addict in the making. Forgo pain management to try and muddle through on your own? You just want to prolong your pain so you can garner sympathy. Everyone need constructive criticism, but this is toxic and demoralizing.

The best groups fit your personality and support your choices without enabling detrimental habits. Much like lupus symptoms, all of us experience communication in different ways. Some prefer physical meetings, the ability to see for themselves others that suffer as they do. Others would rather reach out electronically, seeking camaraderie from the comfort of their home. You do you and find what you’re comfortable with, but know that it will likely take adjustments through trial and error.

Personally, I need to laugh. I need to feel that I can bleed raw truth and have it returned. I need to hear experiences, successes and failures, and be able to reach out to those that understand my disease and all that it entails. I need to know how they cope, and determine if their methods will work for me.

I am blessed with a wonderful tribe. I have understanding children, a loving husband, and supportive friends. Despite this, I still need my lupie sisters (and brothers, uncommon though they may be). No one can understand my trials like they do, and that connection is vital. The cliche, “misery loves company” comes to mind, but I think it is more than that. We need to know we are not alone.

Why Women’s Rights Matter

There’s been a lot of vitriol on my social media about supporting A Day Without Women, an attitude that’s been bothering me since the Million Women March earlier this year.

The common consensus against feminism in general seems to come down to two arguments– it’s an anti-male enterprise and/or I (or the women in my life) don’t need it.

Here’s why both of those arguments are bulls***

First off, yes, there are indeed rabid “feminists”– women that argue every man is a rapist in waiting, and that history should be referred to as herstory. They’re inflammatory and sensationalistic, so they garner a lot of media attention.They are not truly feminists, but separatists, and do little but alienate moderate-minded individuals and obstruct legitimate progress. It needs to be understood that these radical separatists are a tiny minority apart; a viewpoint so drastic that the other side of the spectrum would be women that believe they have no purpose of life outside of breeding.

The vast majority of all women fall somewhere well between these two extremes, and that needs to be recognized. Feminism is not anti-male, it is pro-equality. Equality is not a finite resource; making sure women are regarded as equals to their male counterparts does not diminish the standing of the male population. Feminism is the idea that boys and girls should be afforded the same consideration and opportunities.

As to the second point, that women already have equal rights…I’m afraid that’s unfortunately not the case. Not for everyone. It’s 2017, we should be progressed past this, but we’re not.

Here’s a short, overwhelmingly incomprehensive list of what I mean:

  • In the United States in 2016, women in the workforce earned 79% of every dollar their male counterparts earned. (1)
  • From the last major election in November, 2016, women represent less than 20% of our Senate and House members, and only 5 governors out of 50. (2)
  • In Russia, THIS YEAR, parliament voted to decriminalize domestic violence 380-3, putting women and children’s lives at risk.
  • This letter written by a Utah state official THIS YEAR-

    I wish I was making this up.

  • Having read multiple instances of concern from women that if they were to participate in the DWW protest and abstain from their homemaking duties, they would be met with bodily harm from their spouses.
  • Accusing a boy/man of acting like a girl/woman is still one of the most devastating insults given.

I, personally, have a college degree and I’m a stay-at-home-mom by choice and health-remanded circumstance. I have a loving, supportive husband that treats me like an equal partner, not a glorified housekeeper, and together we’re raising our son and daughter to know their own worth and recognize the worth in others. Admittedly, today’s Day Without Women protest is nothing to do with me directly. However, I recognize that not every woman lives in these conditions. And that is why I feel it is so important for all of us to participate in whatever way we can.

Not every woman in the world, or my state, or my town have the same privileges that I do, and I don’t think that is fair or equitable. I was given the platform of a non-violent protest to make that opinion heard, so I did. If you chose not to because you could not, people understand. However, if you chose not to participate because you didn’t think it was worth it, read this article again.

Feminism, by definition, is the idea that everyone should be treated equally, regardless of their gender. We should all be feminists.

(1) Gender Pay Inequality; Consequences for Women, Families, and the Economy, a report generated by the Joint Economic Committee on behalf of the United States Congress in 2016-

http://https://www.jec.senate.gov/public/_cache/files/0779dc2f-4a4e-4386-b847-9ae919735acc/gender-pay-inequality—-us-congress-joint-economic-committee.pdf

(2) The US Made Zero Progress in Adding Women to Congress, Laura Cohn of Fortune Magazine- http://fortune.com/2016/11/10/election-results-women-in-congress/

Drugs Are Bad, M’Kay? Except Some Drugs Are Awesome.

In honor of blogging from the great state of Colorado on April 20th, I’m going to provide a brief overview on the necessary evil known as drugs.

colorado_mj

It’s 4/20, heh-heh. Juvenile, yet mandatory.

Addiction runs so rampantly through my family tree that I’m pretty sure it’s embedded in the bark; in light of that, I’m fastidious of what medications I put into my body, and I’ve never even tried alcohol, let alone anything illegal. However, drugs and chronic disease are as synonymous as…well, drugs and chronic.

If you weren’t convinced of my fun-drug ignorance yet, perhaps my terrible similes will persuade you.

Regardless of their legality, all drugs have side-effects, and none of them are pleasant. To my knowledge, there are none that leave you with firmly toned abs and farts that smell like freshly-baked cinnamon buns. Most of them are more like this:

Sorry for all of the puke. That’s actually a very common side-effect of a lot of meds, and it never leads to firmly toned abs.

Aside from opiates/narcotics, there are a myriad of different prescriptions available to alleviate the symptoms of lupus, but only one specifically for treatment of the disease. So on a daily basis, I take steroids, anti-inflammatories, antidepressants, anti-malarials, anti-epileptics, and even a chemotherapy immunosuppressant, a drug created for organ transplant recipients. On top of that, every four weeks, I sit in a hospital for several hours while I’m administered a biologic- the only drug that was created explicitly for lupus. Every prescription plays a part in trying to stop my immune system from killing me, which is great, but it doesn’t come without a price.

Side effects include, but are not limited to: acne, hair loss, weight gain, and nausea. If anyone could explain how the last two happen in tandem, that’d be fantastic.

More serious but less common side effects can include, but are not limited to: internal bleeding, osteoporosis, high blood pressure, infection, and blindness. Super fun. The hard pill to swallow (yep, went there) is that these meds are not dispensed lightly, so a medical professional that went to school for at least 10 years has determined that the benefits to me outweigh the risks.

Not going to lie- this takes a great leap of faith and constant monitoring on my part, and I do it in hopes of a few more quality years with my littles and their daddy.

But enough about drugs, let’s talk about drugs.

Having pain necessitates the need for painkillers. Seems like common-enough-sense, right? Except it’s not. Without going into the science of it (because I have no desire to do the research to find the articles that would validate my claims right this minute), narcotics are not meant for long-term use. There are dozens of names for narcotic painkillers, familiar brands are Percocet, Vicodin, Oxycontin, and Lortab. All of them are wonderful for acute pain, such as a broken bone or surgery, but when used on a regular basis in an attempt to control daily pain, it leads to:

  • Tolerance- Diminished efficacy of the drug. You need to continually take higher doses to get the same desired effect, but the unwanted effects multiply accordingly. This is often a reason for unintentional overdose deaths.
  • Hyperalgesia- An increased sensitivity to pain. An ironic side-effect for a painkiller, for sure.
  • A drop in natural endorphin production- Regular, repeated use of opiates literally drains your system and leaves your body unable to create the natural painkilling neurotransmitters.
  • Mood swings- Chronic pain patients don’t take drugs to get high, per se, but there is still an inevitable shift between responding to the pleasantries and experiencing the inevitable let down.
  • Withdrawal- Unless you plan to take an increasing amounts of opioids until you die, you would eventually go through withdrawal. Symptoms include, but are not limited to- uncontrollable tremors, nausea and vomiting, clamminess and night sweats, delirium, hallucinations, paranoia, depression, anxiety, and an increase of pain.

Having a Pain Management doctor is essential- more essential is having a PM doc that is principled and actually understands how drugs work. Unfortunately, they’re not all created equal; in my experience, the most knowledgeable ones have been Anesthesiologists that avidly research new procedures and treatments. Being a military wife means moving every three years on average, so I’ve had more exposure to different doctors than most, and I’ve experienced the full gamut of competency from delivering angel to glorified pusher.

Currently I’m a thankful patient of the former, but one particularly distasteful experience involved an MD that was willing to dispense large amounts of Oxycontin and Percocet on my first visit- before even looking at my chart. I left his office sans meds, disgusted by the fact that if I didn’t know any better, he could have easily further corrupted my health.

Being in Colorado, I’ve had the opportunity to look into medical marijuana (MMJ) as an option. Getting a medical card when you’re an old lady with lupus is easy, but knowing what to take and how to take it is hard.

As much as certain groups rail against the pharmaceutical industry as a whole (and it’s certainly not without its flaws), there’s a certain comfort in knowing that the amount I’m prescribed, and when and how to take it, has been thoroughly researched. MMJ is all about trial and error, and it’s all on you. In the year that I’ve had my MMJ card, I’ve tried various products with varying success. There are a number of CBD/THC products in varying ratios, and learning your tolerance for any of them takes both concentrated effort and the time to put them into your system when you know you don’t need to be behind the wheel or anything of that ilk.

Just as a refresher of the differences:

  • THC- This is what people generally think of when you say “marijuana”. It is the cause of psychoactive effects.
  • CBD- Will never cause a “high”, no matter how much is consumed.

There are so many different strains of both THC and CBD that tackling those would be its own blog post, and deciding what fits your needs is entirely up to you and your research. On top of strains, there’s also many different ways to get it into your system.

Some of the options of ingestion include:

  • Smoking/vaping- I personally don’t think the benefits of ingesting MMJ this way outweigh the risks to my lungs, so I’ve never tried it.
  • Edibles- This includes everything from chocolates to tea to gummies and everything in between. There are measured edibles, like scored chocolate bars with the dosage imprinted, and edibles that are so nasty that I couldn’t choke them down.
  • Balms- These are GREAT for site-specific pain. The one drawback is that it never completely absorbs into the skin, but the stickiness is a minor inconvenience compared to the relief.
  • Oils/tinctures- I’ve found this has been the most effective choice for overall pain. As manufacturers become more savvy, they’re recognizing the need for specific measurements and dosage options. 20:1 CBD:THC ratio works very well during the day and allows me to function, while a straight THC lets me sleep through the night. That’s something I haven’t done in far too long.

As much as I wish I could give everyone a comprehensive list of medications and dosages that would alleviate all symptoms…I can’t. I’m just a blogger with too much experience for my own good. However, if I were a practicing physician…I still couldn’t. This s*** doesn’t work that way.

Sorry.

BUT,

Don’t give up. Keep an open dialogue with your doctor(s) and educate yourself about every medication you take. If you have questions, ask them. If you have concerns, have them validated or discredited. Basically, if you’re taking anything know why and what effects to look for- good and bad.

Emotional Support Penis

I’m not sure when I realized that I needed my husband to validate my concerns when I see a doctor, but sweet baby Jeebus, do I ever. Especially on first-time visits.

I thought that fully-formed words leaving my mouth in an acceptable order at an audible volume met the sufficient requirements of communicating clearly. I had no idea that I was missing an integral element to actually be heard.

 

A penis. I was missing a penis.

 

You see, quite often when a woman goes alone to see a physician for health issues, chronic or not, there is an underlying perception that she is…how can I put this delicately?

From the Classical Era of Ancient Greece (and let’s be honest, probably long before that), women have been viewed to hold hysterical tendencies. Hysteria was literally thought to be the product of a “wandering womb”(1).

Let that sink in for a moment–if a woman had any complaint, whether physical, emotional, or mental, it was believed to be because her uterus was taking a stroll. If you can’t actually hear me rolling my eyes, rest assured, I am.

The unsaid flip side to this mindset was that women were unable to suffer like men, that certainly they had to be exaggerating, or confused, or flat-out just seeking attention when they presented complaints.

Lest you think this is a man-hatin’ slugfest, I should mention that female physicians generally aren’t any better. In fact, there can be the additional issue of female physicians looking down on their female patients for seeking help instead of toughing it out; “manning up”, so to speak.

For instance, there was the rheumatologist that told me that I needed to “pull myself together” when I tried to explain that I had had to withdraw from college and was finding it increasingly difficult to work even part-time due to pain and fatigue. Because she had been able to work her way through med school, she saw no reason why I couldn’t work and/or complete my undergraduate degree without complaint; my concerns were completely dismissed. There was palatable contempt because I was exhibiting a negative female stereotype–weakness–and I was making the rest of womankind look bad.

The hysteria mentality is embedded in medical culture, much to the detriment of women the world over. I asked a couple of my chronic pain social media groups if they had ever experienced misogyny with medical providers, and within half an hour, I had received 20 incidents that made me positively ragey. Less than 24 hours later, there were 80. EIGHTY. And none of them were any less infuriating. Here are a few examples:

“My whole life. And in contrast- my dad went in with an almost identical problem, got a diagnosis and a fix almost immediately.
I have been anemic my whole entire life. Complained of being sleepy and cold. I was told I have heavy periods and eat red meat (I am allergic). I quit leaving the house out of fear of being cold. I got dark circles under my eyes from severe anemia at age 10.
I napped every single day of my school years. My joints creak like an old wooden door. I’m tiny and underweight so I must be fine.
I got turned away from so many doctors because girls are just anemic sometimes (it was before I got periods and continued after my periods were stopped with medication by OB/GYN because she said I could die with iron that low).  I’m fine I was told for 17 years. I was never fine. I have severe Crohn’s and it’s suspected I have for over 20 years. I complained to anyone who would listen and no one believed that I could be sick. Crohn’s almost killed me from internal bleeding. That’s why I was anemic. It took a team of 6 great (all female) doctors to realize women and girls aren’t ‘just anemic sometimes’. I hate every doctor that told me I was too skinny to be sick and that I was making it up for attention.”

“I was pretty much told that I was making it up and should look into seeking help for possible Munchhausen when I went to the ER for severe pain in my abdomen. The male doctor told me that it was probably just bad cramps and that I should get used to it. I didn’t tell anyone about the pain for the next year until my mom caught me crying from it, which she knows is a big red flag because I’m used to a certain level of constant pain. It was stage 3 endometriosis and and what was now a golf ball sized cyst that had cause pretty severe uterine torsion.”

“I have PCOS and went to the ER with shooting pains in my legs and they said it was just cramps. My first OB/GYN thought I was just saying I had pains to get birth control and then found cysts and an irregular shaped uterus.”

“I had an ovarian cyst that had hurt constantly for three months and the male doctor told me it was probably my period. When I asked “you think the constant, one sided pain is my period?” he sighed super heavily and was like “so you want a CT or something?” Then, my insurance called to tell me they were denying the CT and when I asked why, they said they’d been given insufficient information on why I needed it. Apparently the doctor had written on the order ‘unnecessary; patient request’.”

“Boiled down my breathing problems to anxiety…nope. I had food allergies.”

“My GI doctor called me ‘a precious little girl’ when I had to go in for an ultrasound and sonogram for my insides. He then made fun of the amount of anxiety medications I’m on, stating I had ‘white woman’s disease’ and said he would’ve diagnosed me with hysteria if he were my GP (seriously what year is this?) my issues/complaints fell on deaf ears. When I stated I wanted a second opinion, I received a letter stating that I was no longer allowed at that GI practice, regardless of which doctor I was to see. It was a really unfortunate time and I definitely was dismissed as just being a ‘hysterical woman’.”

” I had a broken neck misdiagnosed as stress, LOL.”

“My gynecologist recommended I get the Mirena IUD, well, long story short, I hemorrhaged really badly as a result, to the point I was so anemic I was having difficulty breathing and was passing out. I wound up in the ER. I was explaining everything to the doctor there and, out of nowhere, this other doctor comes in to the room and starts listening to the tail end of my description (I guess because it’s a teaching hospital…hell if I know). He butts in, says, ‘If you’re that dramatic over having your period you should have a hysterectomy.’ Then he turned around and walked out. I just sat there stunned. Turns out I had bled so much I had to be given blood and a shit ton of iron. Thankfully, the damn IUD actually came out because I was bleeding so much.”

“I wound up having a hysterectomy at age 25 (and childless) for stage IV endometriosis (which means it was in other organs at that point, no longer just limited to my reproductive system). The reason it had progressed to stage IV is because I had been previously diagnosed as having IBS and anxiety by one doctor & ‘female complaint’ by another.”

“When I had horrible stomach pain and severe rectal bleeding as a 17 year old, my doctor sent me to stress therapy. I lost 1/5 of my body weight and got admitted to the hospital with a high fever before anyone believed I was sick, and got my Crohn’s diagnosis. (Doctor was female as well, which goes to show that misogyny is just that pervasive in medicine.)”

For the sake of my own sanity, I’ll limit myself to relaying only these experiences, but know beyond any doubt that I could write a full post just like this one about each and every woman that has had to deal with persistent medical issues. I think that I would be hard-pressed to find any women that haven’t felt disregarded by someone in the medical profession at some point.

It’s maddening that the presence of a penis at an appointment is the catalyst that leads to being taken at my word. Suddenly, my symptoms aren’t second-guessed, my mental status is not brought into question, and I’m not given a heavy sigh and asked if I’m sure I’m not exaggerating.

Having a physically intimidating husband escort me to visits doesn’t necessarily erase all problems, but I can guarantee you that Dr. Dick would never have been such an ass if I had been accompanied by my 6’4″ soldier. My husband’s mere presence conveys that at least one man believes that I’m worth being heard. Think of it as the medical equivalent of telling a creeper that you have a boyfriend–no matter what else you might say, the fact that you ‘belong’ to a man is what is actually heeded.

So, as infuriating as it is, I highly suggest women take a spouse/boyfriend/father/brother/male friend to, at the very least, the first appointment with a new doctor or when presenting a familiar doctor with new symptoms.

It’s up to you whether or not you make him wear an EMOTIONAL SUPPORT PENIS vest.

 

 

(1) Hysteria and the Wandering Womb-

https://academic.mu.edu/meissnerd/hysteria.html