Doctors Need to Be More Open to Looking for Zebras When They Hear Hooves

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Oh joy! Another odd, strange, bizarre symptom to add to the collection has reared its ugly head. You know what I needed was another “thing” for my battalion of doctors to test for. Something that “doesn’t make sense,” “doesn’t follow conventional rules” – we who live with autoimmune diseases like lupus are so used to this it’s like an old friend. We live in the world of the unknown.

There is an old adage in medical school that tells doctors when they hear hooves to look for horses – not zebras; in other words, look for the most common, not the exotic. Unfortunately,we lupies tend to live in the Sahara with the zebras and doctors who aren’t willing to look past the hoofprints of the horses are frustrating and exhausting for us. In my early years, I lived in the uncertain world of pre-diagnosis, a miserable 15 years of test after test, a parade of doctors, some more willing to embrace the exotic and others unwilling or unable to remove the blinders that only horses existed. I can’t even get into the damage those doctors did to my self-esteem and my health (that’s a whole other post!). Just know I am forever grateful for the amazing, brilliant, compassionate team I have assembled now.

Even with my amazing team of doctors, the thought of dealing with another “party favor” from either the lupus or fibromyalgia or Hashimoto’s thyroiditis or diabetes or any of the host of medications ingested to treat the symptoms of all of these (and the medications taken for the complications caused by these medications!) is daunting. I’ve already done the “do I really need to report this?” debate as all of us with chronic illness learn to do. I swear, most of us could have a limb falling off and we’d do a pro/con list about going to the ER. Then you do the “which doctor do I report this to?” question, which is never easy. Sometimes it’s easy and clearly easy to trace back to a new medicine or organ system (involves breathing? call the pulmonologist!). Other times it involves multiple systems or defies logic and there’s no clear cut answer.

 

Sometimes your doctors will give you a “flowchart” of whom to call. Other times they play “pass the patient” and bounce you back and forth. This time I spent time on the phone with nurses, receptionists and various doctors’ personnel (have I mentioned yet how important it is to be on a first name basis with these people?) from two different doctors’ offices only to be sent to my primary care doctor who immediately said I should have been at the specialist’s office. She’s an amazing, brilliant clinician who always has my back and gets as frustrated as I do when this happens. And this happens – a lot. Until you find the right specialists who aren’t afraid to ask the tough questions, look a little deeper than the surface and spend more than the 15 minutes the computer has squeezed you in for, you end up feeling like a tennis ball, passed back and forth from doctor to doctor. (Incidentally, my favorite quote from my primary care doctor is: “Amanda, I dream of the day you come in with strep throat or a sinus infection – just something easy I can fix for you!” I love this lady! No matter how hard and murky things get, she keeps fighting for me.)

I once had a neurologist who was great with my migraines but once things progressed into the more murky world of autoimmune territory he wasn’t the right fit anymore as he wasn’t willing/able to look past the simple answer, even when it didn’t fit. When I called with horrible pins and needles and shooting pains in my feet and up my legs he insisted I didn’t need to see him – I needed a dermatologist, as this was clearly a rash. Um… Looking down, I clearly saw no rash; however, a visit to my rheumatologist confirmed it looked like we were now dealing with neuropathy, a neurological complication from lupus and other autoimmune diseases. Once I finally convinced this neurologist to see me and he saw no rash (um, hello, vision is not one of my issues here?), he reluctantly agreed this was neuropathy (tell me something I didn’t know already). Needless to say, this was my last appointment with him.

As I go into the unknown tomorrow, here are a few things I’ve learned (some the really hard way!) over 30 years of dealing with the weird, strange and odd world of symptoms that don’t make sense.

1. Go in with no expectations. I used to go in expecting the doctor to have all of the answers, only to be anywhere from upset to devastated to find out further testing/another doctor/”wait and see” was going to be the answer. When you go in with no expectations, you can’t be upset as you don’t get your hopes up – you just go in and listen.

2. Do not Google your symptoms, no matter how tempted you may be. No matter how benign it may be, you may end up being convinced you have weeks to live. Before you start making your will and planning on finally telling off your boss, remember that if you ever want any reliable information about your disease, look for ending extensions like .edu, .org or .gov (best advice from my beloved rheumy). Anyone can write and publish under .com (just look – they are publishing my words!) Personally, I like the Mayo Clinic, the National Institute of Health and, for lupus, the Lupus Foundation of America.

3. Write down everything you need to report, including a timeline of this newest problem. In the heat of the moment, you are apt to forget something and don’t want to waste valuable time fumbling with your phone calendar to figure out exactly when things started. This is especially important for those of us impacted by lupus/fibromyalgia fog, when there are times we are lucky if we can remember our name, let alone specifically what day or in what order things happened.

4. Keep calm and know this too shall pass and more will come. Yes, life in the land of lupus is never dull. You can’t get all excited and panic every time something odd or weird pops up. Seriously, you won’t make it through the first few years of strangeness if you ring the alarm bell every time your body does something bizarre. I’ve developed a kind of odd, detached, fascinating, narrating-a-wilderness-documentary-special approach to my own body. (“Look, the lupie is showing her bold red markings across the cheeks and nose. The blazing hot to the touch rash is common amongst her kind and marks her as a member of her tribe. Was it the brief walk from her place of employment to her car and the exposure to the bright day sun that caused this today? Perhaps the lupie should not have stopped to exchange pleasantries with her coworker, a non-lupie, who did not have the same UV concerns. Stay tuned to see if this will produce a full-blown flare or blow over by the morning.”)

As for me, I go into tomorrow’s appointments knowing it’s just the latest chapter in this saga that is “Life With Lupus.” There are no easy answers when it comes to dealing with chronic illness, especially autoimmune illnesses like lupus. But it won’t stop me and my team of intrepid doctors from continuing to look. And I’m forever grateful for those doctors who know that while not all hoofbeats are horses, we lupies are sometimes zebras, ostriches, meerkats and half the cast of “The Lion King.”

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Thinkstock photo via LAByrne.

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How the Sun Affects My Skin Because of Lupus

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The UK is currently celebrating something of a rare phenomenon: the skies are blue, the temperatures are up and, for the first time in an eternity, it’s actually sunny! I love this weather, I really do. Everything always seems so much easier to achieve when the sun’s out. Sadly, however, this weather doesn’t really love me. Aside from the heat making me feel triply sluggish, going out in the sun can be an incredibly risky business.

One of the many annoyances of having lupus is being extremely sensitive to sunlight; this is called photosensitivity. For many, exposure to sunlight can make symptoms, such as rashes, much worse. In my case, the pigmentation on my face darkens with lightening quick speed. A quick, unprotected trip outside, and I look like I’ve been stamped on the forehead with a triangular branding iron.

The strange shape of this pigmentation is something of a mystery, both to me and the dermatologist who checked it out. I’m guessing that either I fell to earth from Krypton and have undiscovered superpowers, or it’s some sort of magic inner eye. Either option would be acceptable and more than welcome.

Unusual markings aside, if my ridiculously sensitive skin is exposed to the sun, it soon starts to tingle and feel like it’s on fire.Well, actually, it’s more like a freezing cold case of prickly pins and needles. I imagine this is how vampires feel – or at least it’s how they are portrayed in the “Twilight films,” when their skin glows and sparkles in the sunlight.

Spending too much time in the sun can also bring on a lupus flare-up and make me feel downright grotty. This can be accompanied by full-on flu-like symptoms that can knock me out for days.

Taking Azathioprine makes me that much more sensitive still. I reckon my skin now starts to burn before I’ve even put my shoes on and headed outside. Take this morning for example. I walked around the garden once and sat down for five minutes with a cup of tea. Now that I’m back inside, my arms are already cold, tingling and decidedly sore. This is both frustrating, annoying and painful, in equal measures.

Yes, it’s safe to say the days of dousing myself in tanning oil and sizzling like a sausage on the beach are long gone. I shudder at the thought of all the damage I must have caused my young skin in those heady, uneducated days of the ’80s and ’90s, when everyone smelt like Hawaiian Tropic and looked like overcooked bacon.

These days it’s all about finding a fake tanning product that gives me the right color. I’m aiming for a realistically sun-kissed shade, rather than a toxic glow.

The pluses of being so sun sensitive are that I have no choice but to stay out of the sun as much as possible; this helps to keep the crows feet at bay. On the negative side, however, the additional sensitivity brought on by taking Azathioprine increases the risk of skin cancer. A pretty major negative I know, but one I really have no choice but to take. These toxic drugs I pop every day are helping to make life much more bearable and relatively pain-free. It’s all swings and roundabouts, as they say.

When living the life of a vampire, all you can really do is be sensible, resist the urge to top up your tan and make sure you protect yourself any which way.

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Fighting the Chronic Illness Battle Alongside My Daughter

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You know that saying, “You don’t know how strong you are until being strong is the only option you have?” Well, that is the story of our lives, the words we live by, our “family anthem.”

I have lupus, and am now battling CNS lupus in which my lupus is attacking my brain, nerves and nervous system, causing me to have facial droop off and on, be unable to walk at times and, just last week, I was unable to see for three days. I’m on chemotherapy – Cytoxan with combination of Rituxan and other immunosuppressants – to try to treat this miserable disease.

If you think that’s hard enough, imagine going through this battle and then watching your daughter just starting to fight her own battle at the same time. My oldest daughter, Hailey, who is 17, just started her difficult journey. After having been diagnosed with Graves’ disease and battling thyroid cancer (and just last year she had a thyroidectomy and a parathyroid gland auto-transplant), Hailey is now battling new slew of autoimmune diseases: mixed connective tissue disease (MCTD) with a positive test for SLE, scleroderma, polycystic ovary syndrome (PCOS), Celiac disease and chronic fatigue.

We have days where we just lie in bed together. As I lie with her, we both try to encourage each other: “We can do it, we got this, let’s get up!,” like two cheerleaders cheering on the same team of doom. I see myself in her, and I cannot imagine her going through what I am going through now.

 

Our days are spent going to each other’s doctor appointments, specialist visits, treatments, labs and x-rays, like it’s our full-time job. Our 45-minute commute to the medical center is spent talking about our symptoms of the day, writing down questions for the doctor and listening to our favorite music in the car as we complain about our aches and pains. My kitchen’s chalk board is usually full of the “medical things to do” that month.

My husband works in the oilfield industry so he works mostly out of town and state, leaving me to care for Hailey and our youngest daughter alone. At times, I do feel as though I am a single parent – to no fault of my husband. He is the only person in our family working after I had to resign from my job. He cannot afford to take days off because of our expensive treatments, the hospital stays, surgeries, the chemo and copays. Being chronically ill is expensive and financially draining, especially if there is more than one of you in the household battling illness at the exact same time. Therefore I remind him that his job is just as important as mine. Even though he is there and I am here, we are in this together.

Some days I’m so weak due to my leg tremors that I can barely walk. My hands shake and my body is in tremendous pain. Those are the days Hailey will drive us around, and though she’s not feeling well herself, she reassures me, “It’s OK mom, you are feeling worse right now.” She holds my hand during my chemo treatments or infusions, then I hold hers when it’s her turn.

I remember when she was in the hospital after her thyroidectomy and parathyroid transplant surgery, I would go across the street for my infusion treatment and then rush back, physically struggling, to be by her side. I would lie in the fold-out chair next to her, and both of us would be lying there, quietly, each fighting our own battle.

We have this unspoken support for each other. We know we both are going through a lot, but we never, not once ever question it. Anytime one of us needs to go the ER, we just do it. It is like second nature. Even my youngest daughter who is 14 knows the routine: text or call Dad to let him know and make sure she is by the phone just in case one of us calls with updates. It’s a routine that’s become “normal” to us.

Some people tell me I am so strong, or they can’t wrap their minds around what we go through. My husband’s coworkers ask, “How do you do it, being here and not there?” You know, we have never actually thought about that. You honestly cannot understand what it is like to go through this type of situation until you live it. I’m not just “strong” – I’m a parent and I don’t have a choice. I would like to think any parent would do the same.

I’m not going to lie and say I have never broken down and cried. I’ve broken down quite a few times in the car, and so has Hailey, my husband and even my youngest daughter, who recently said, “I wish we could all go back to being happy and healthy.” It’s not easy hearing that. As a family we do miss out on a lot fun functions and activities. Hailey can no longer play sports. We don’t go hiking or camping anymore. Most of our family time is spent being sick at home or in the hospital, but we never wonder, why us? We just accept it and we always get through it. Our family of four has this bond that is unbreakable, and being strong is the only option we have. We take one day at a time, fight one battle at a time and stay strong one day at a time.

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To My Husband Who Didn't Sign Up for My Chronic Illness

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Dear husband,

We met a couple of months before I turned 18. At that age, we didn’t really think about the future. We were young. You were funny, cute (still are!) and we got along for the most part. We moved in together very quickly. So fast that we celebrated my 18th while living together. It wasn’t easy but we made it work. Every fight, every move, every family issue…it was easy to work it out with each other. You have been my rock and biggest supporter through the most difficult moments of my life. Even the parts I wish you didn’t have to be there to see.

 

A mere six months into our marriage I went from “healthy” to chronically ill. When I first got sick, you held my hand when I thought I was going to die. My anxiety over my health kept me up late at night but you didn’t leave my side. You let me stay home with our son. You didn’t blink when you needed to quit school and take an awful job to pay my new medical bills. Never once have I heard you complain. I didn’t hear you complain when we had to move in with family because I needed more help than you could give while working. Not even when you would come home to a dirty house and have to make dinner for our little family. From day one, you supported me without hesitation. You helped me get to all my appointments, you made sure I took my medications, you made sure I ate healthy when I wanted to just sleep and most of all you loved me when I couldn’t even love myself. As always, you’re my rock and my best friend.

I thank you for being my everything and putting your family first when many might have left. I also want to apologize. I’m sorry you didn’t know what you were getting into. You didn’t sign up for my diseases. More often than not I wonder if you regret marrying me since I’m sick so frequently and we have buried ourselves in debt to keep me alive. I wish I would have known when we met. I could have saved you from me; I could have saved you from a disease that has pushed so many of your dreams aside. When I look at you I feel that you deserve so much more than what I have to offer. Although you have never shown me you feel that way, it is constantly lingering in my mind.

While I’m in better health now, I have my bad days. You still smile and ask me how my day was when you come home. Even if I haven’t showered and the dishes are still in the sink. If I have been pushing myself too hard to keep up with our daily life, you’ll remind me to rest. When you look at me all I see is love. I know in my heart you would still say “I do” even if you knew about my lupus. I’m sure you would jump in with the same enthusiasm and love that you do now. When my guilt from my illnesses surfaces I have to remind myself that you love me. That even with lupus and my other issues I am worthy to love you and to be loved. Thank you for being you, for accepting me for who I am and for being there unconditionally. Without you, I wouldn’t have made it this far.

– Your Loving Wife

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I May Be 1 of 5 Million With Lupus, but I Am Far More Than a Statistic

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Medicine can’t tell you much about lupus, but it loves to throw out facts. If you Google lupus right now, a range of statistics will pop up. According to Monash University, lupus affects five million people worldwide. It’s most predominate in the 15-44-year-old age bracket, and 90 percent of those who have lupus are female.

The thing I hate about these numbers is that while definitive, they’re cold and don’t tell you anything about the people who make up these statistics.

Being diagnosed with lupus meant I was forced to face my morality. It meant that life is no longer a never-ending journey where I don’t know what’s coming for me.

 

Somewhere along my path a signpost has been stuck in the road, signifying there’s now a definite end point to my life. At 21, I know that one day I’m going to die. And it’s completely probable that what’s going to be the root cause of my death is the very thing I fight against every day. As dire as that may sound, I’m as at peace with that information as possible. It’s just fact.

But something I do struggle with is the numbers. My passing will make me another piece of quantitative data in relation to lupus. I will be just another person lost to this illness that wreaks havoc on so many, yet we know so little about.

Those numbers won’t tell you anything about the mass of amazing people who live with lupus, fighting a life-sucking condition every day of their life, only to one day lose an ultimately un-win-able battle.

Numbers can’t tell you how many nights we fight insomnia, how many mornings we struggle with just waking or how bouts of anxiety and depression plague us.

They can’t tell you how many of us have reached out to support one another, found camaraderie in shared hardship and created strength out of what should’ve been weakness.

Numbers can’t tell you how many of us were forced to mourn our old selves, how many careers weren’t pursued or how many relationships suffered and broke down at the hands of our illness.

90 percent is such a telling number, such a large majority. But one number can’t tell you that many of the women who make up that 90 percent probably struggled with pregnancy. And if they were successful, they lived in fear of passing on their greatest struggle to their greatest love.

There are five million people in the world with lupus. Five million people who get up every day and refuse to give in to a never-ending struggle. Five million people who deserve to be remembered as more than just a statistic.

I don’t know what number I am in that five million, but I do know it can’t tell you the best things about me.

It might be the number 4,789,199, but that won’t tell you how I refuse to bow down to my illness in defiance, in honor of the girl I mourn and used to be. Maybe it’s the number 826, but even that can’t tell you how it feels to achieve my goals, despite the odds being stacked against me. Or maybe it’ll be 134,222, but that won’t ever be sufficient in outlining my accomplishments and my struggles.

All I know is the most important number, as of today, is 347: that’s the number of days since my diagnosis and the number of times I’ve woken up and taken my life back from my soul-devouring illness.

I’m more than just my illness, more than a statistic could ever tell you. I’m more than just a number.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Thinkstock photo via RossHelen.

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How Building Walls to Protect Myself Against Lupus Also Shields Me From Love

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Lupus was the ultimate wrench in the works. There isn’t one aspect of my life that went untouched; nothing was safe or left unchanged. I have to admit that in most cases it’s been a positive thing. However, when it comes to love, I can’t bring myself to confidently place it in the “good” category.

Lupus has made me an incredibly strong individual. Evolving into a stronger version of myself wasn’t so much a choice, but a necessity. To not choose strength would mean relinquishing control of my life to my illness.

But with strength come walls and barriers. You can only take so many hits before boxing yourself in becomes not only instinctual, but a mode of survival. The first two punches come flying in at you hard and fast, the shock of them leaves you stunned and it takes a while for the pain to properly set in. After a while every blow feels just like the last. Just another attack on the system, and you start building up and pushing out – hiding the soft side of yourself from anything that could damage it.

 

Looking back I remember myself as a “softer” person. Before lupus I was lucky in that I really hadn’t seen much loss or pain in my life. I made it to 20 years before something truly shook me, but it was only a sample of what was to come with my diagnosis mere months later.

The best thing about living without this hard exterior shell was the ease I felt in loving someone. I was free to love them without boundaries; I didn’t have to break myself down bit by bit to let them in. I wasn’t afraid to be vulnerable for them.

Relationships require an openness and honesty that no longer comes easily to me. I can’t yet trust myself to feel truly vulnerable, as I only associate such an emotion with memories of overwhelming hurt.

It’s not that I push people away; it’s more that I hold them at a distance that seems safe to me. Close enough to form something, but just far enough away that I can cut all ties and run at the faintest sign of trouble. No one deserves that.

I want to love and to be loved, but in this modified version of myself, I’m not sure I know how anymore. You can’t love just half of a person. Yet I don’t know if I can trust anyone with everything I am. I’m so scared to hand over what’s left of my “soft” self.

Under all my layers, I know there’s still a part of the old me, the “soft” me. Every time I start to like someone I feel her peeking out from behind all of the walls I’ve built up, smiling at them and trying to form a real connection. But out of habit, I gently coax her back inside, and close off that part of myself out of fear.

I fear that if I let her out to form something real, and get close to someone to love, that she’ll only get her heart broken. This part of me is so hopelessly romantic and so naively optimistic, and I while I adore it, it also scares me to death.

I’m scared because I’m so imperfect, and I know this only too well.

I don’t want to get my hopes up just to watch them come crashing down in front of me. I don’t want to feel things for you, in case one day you change your mind on a whim. And even though you might bare your soul for me, I’ll really struggle to bare mine, because I’m afraid that when it comes down to it, you’re just not going to like what you see.

I’ve built walls to protect myself, to shield myself from pain and hurt. The reason I can’t break them down to let you in is that ultimately, I’m just so scared that my greatest imperfection, my lupus, means I won’t be worth fighting for.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Thinkstock photo via Liderina.

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