To ER or Not to ER: That Is the Question When You Live With Chronic Illness

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Life with chronic illness means inevitable trips to the ER. We all hate it, loathe it, most will do anything to avoid it, but it’s a necessary evil. I’ve joked before that we can have an arm half falling off and will still play “Let’s Make a Deal” with our doctor, saying, “Are you sure I really have to go? Can’t I just take something in my arsenal of medicines?” In the end, you bundle up in the car (many of us have “to go” bags at the ready filled with everything we need – more about that later) and make the trip to our local ER, resigned that whatever we had planned for the day is now shot as this is never an “in and out” visit.

For me, living with lupus, fibromyalgia, asthma, hemiplegic migraines and a host of other “party favors” that have come along, I have been warned to “report any new, odd or troubling symptoms immediately” to my doctors. I’ll be honest folks; if I reported every new, odd or troubling thing my body did on a daily basis, I would never leave the hospital. Life in the Land of Lupus is never dull, so you learn to only notice the really big things.

Pain is constant, pain is chronic, pain is always there. Sometimes it’s worse, sometimes it’s better, but on average I live at about a “4” on the one-to-10 scale and I get used to it. If it spikes to a nine (I never call a “10”) I take something and deal, but if it’s in a “troublesome place,” a.k.a. chest or head, then I play the “Pains of the Past” game. Is this a familiar pain? Stabbing, throbbing, slicing, dull, radiating, constant or intermittent? If so, what did I do in the past? Repeat as necessary. If this is new, go directly to your local ER, do not pass go, do not collect $200 (but be ready to pay the copay as many now collect at the visit) and be ready to answer the above questions – over and over and over again.

 

Sadly, by this time, as a “frequent flier,” you are probably known at the ER already and some of the staff may even greet you as you come in (remember the greeting “NORM” as he walked into the “Cheers” bar – there are times in my fantasy life I feel like that at the pharmacy, ER, doctors’ offices, etc…). By this time, the ER is no longer an “exciting” experience for anyone involved.

In fact, because my children are young and need their dad, often they just drop me at the curb and I do this alone. It’s not ideal, but you do what you have to and I refuse to expose my kids to any more of the ugliness that is life with chronic illness. It has robbed them of too much of their precious childhood, so we try to make this as routine as possible. Does it truly suck to go through this alone most times? Yes. Having an advocate by your side makes all the difference in the hospital and having to be the patient and fight for yourself is not easy (that’s a whole other topic) but it’s reality for many of us who have kids, so you make do and put on your big girl panties (clean, always – remember what Mom always said about going to the hospital!) and soldier on.

Remember that “to go” bag I mentioned? Here’s where it comes in really handy. Life with chronic illness means a lot of time in waiting room. They call them waiting rooms for a reason! My handy-dandy list of items to have on hand:

1. Up-to-date list of medications! Most crucial. Every “professional patient” knows that trying to list all of your meds with dosages (over and over again) is exhausting and tough enough on a good day but when you are in a medical crisis it can truly save your life. Also include any medication allergies!

2. Up-to-date list of all medical conditions. Handy tip – there is an emergency button on iPhones that anyone can unlock without your passcode where you can load the crucial information.

3. List of doctors and their phone numbers. No doubt, like me, the “D”s in your phone are a “who’s who” of doctors and specialists. (My friends all know – need a doctor, ask Amanda! I’ve fired more doctors than most will see in a lifetime!) This is especially important when you have a “complex” medical history. That’s their favorite term for me: “medically complex.” Most ER docs will have little, if any experience dealing with your disease(s) and hopefully will consult your doctors.

4. Tablet/iPod (iPad, Kindle, etc…) – something you can use to read, entertain yourself, contact social media, connect to the outside world and distract yourself from the chaos around you. Ear phones are also key to drown out the noise and calm yourself when needed. Most hospitals have free wifi so if you have Netflix, Hulu or other services it’s a good time to binge on a fun, distracting show. Love to read? Great time to dive into a new series. That’s the nice part of the electronic component – finish your book at 3:00 a.m. while you’re waiting for the results of the CT scan? Go online and download the next one in no time. I swear, what did our chronically ill ancestors do? Poor souls forced to read the one book they came in with? How did they survive?

5. Your phone. You may be like me and not let anyone know when you’re at the ER or you may post it to your Facebook page – everyone has different ways of dealing with their chronic illness and no one way is right. For me, I don’t like to worry anyone until I have to. As one doctor said to me, “With you it’s either life-threatening or nothing – just a part of everything else – we can’t play around.” Um…OK?! So I can’t sound the panic alarm every time something goes wrong. I can’t do that to the people in my life nor do I need that amount of drama around me.

Usually I let a very few core people in on a “need to know” basis. They are my #squad, my village, my lupus support group – the people on whom I can, and do lean for my support in times of crisis. The people who don’t tell you how upset you being in this position makes them feel. They are the people who are there to listen to your fears and pain and listen, really listen, without judgment or preaching. They are the people in your life you know you can count on in good times and bad. Family isn’t always blood and I am blessed to have some incredible people in my life who are there for me and my husband and children day in and day out. But I digress. This is yet another topic for another post. So, bring your phone so you can keep in touch with those who need to know what’s going on.

6. Your chargers. With many electronics comes much battery. I even stick an extra battery charger in the bag just in case. My husband once got a seriously cool charger that has three different prongs for three different kinds of devices at a conference. I totally stole that sucker from him and love it for its versatility. (Maybe I should look into becoming a spokesperson for some of these companies – I could totally nail that. “Spending a lot of time in waiting rooms? Don’t let a dead iPhone battery hold you back. Try the new Super Battery 2000!”)

7. Magazine, sudoku or something non-electronic to read/do. Sometimes electronics do die and/or the light can bother your eyes.

8. Comfort items. Lip balm, eye drops, bottle of water, coloring book, soft blanket, anything that brings a little comfort to you in this very uncomfortable situation.

9. Patience and your sense of humor. My lupus support group and I like to joke about an ER bingo game of “common sights in your local ER,” such as a patient wandering the halls with the back of their gown open, giving everyone a “show,” or a patient screaming, “Help me, help me! Nurse, nurse!” at the top of their lungs nonstop. I’d love to hear yours in the comments!

The ER can be a few hours or sadly a day or two depending on how backed up things are. The gurney is ridiculously uncomfortable and things are understaffed and the staff is overworked. Complicated cases, like mine, take time and resources, two things that are in low supply in the ER. There’s often nothing “open and shut” and the doctors and nurses often know less about our diseases than we do. I’ve done more lupus awareness educating in the ER than in a month of lupus awareness posts. Occasionally, I’ve gotten a sympathetic nurse who has a friend or family member with lupus who understands and I don’t have to explain and that’s a blessing. Other than that, it’s a whole lot of “Wow, you’ve been through so much!” (tell me something I don’t know) and “You’ve got such a great attitude about things.”

Here’s my take on surviving the ER when you are a “professional patient.” You have no choice but to have a great attitude. Patients who are nasty and belligerent do not get better care. Because I’m usually on my own, I have to be my own advocate and willing to stand up for myself and my rights while being pleasant and polite. This is a hard line to walk, as you need to be strong yet sweet. You are the “good cop” and “bad cop” in one while lying in pain on the stretcher. You’re scared, alone and must keep your wits about you. Getting all emotional and unhinged will not help. You need that “calm place” to go, a way to distance and distract, that sense of off-kilter humor to keep you in a good mental place. At least that’s how I survive. So if the next time you’re in the ER and you hear someone shout “Bingo!” and giggle from the cubicle next to you, poke a head in and see if it’s me and say “hello.”

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Thinkstock photo via ddea.

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How My Face Changed Over 3 Years While on Steroids for Lupus

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This is a comparison of my face from 2015, 2016 and 2017, all from around the same time of the year:

In other words, pre-diagnosis of lupus, when I was on about 40 mg of Prednisolone and nowadays when I’m on 10 mg.

I like looking at the contrast between non-moon face, utter moon face and nearly gone moon face to remind myself that it wasn’t permanent.

I used to think I wasn’t very vain or fixated with my physical appearance. Then I realized it was because I’ve always been more or less comfortable with the way I looked, and when that was taken away from me by Prednisolone my self-esteem just crashed. It’s silly to be so preoccupied with how my face looked different – but being unable to recognize myself in photos was a shock, and when you’re only 22 and you feel like you’ve already lived your best looking days, it can feel like a huge loss.

 

Chronic illness can take away a lot of things – self-esteem, carefree days, quality of life, as well as your health. It can also change things such as your physical appearance, way of life and even goals and ambitions. The impact isn’t just on your body in terms of organs or symptoms, but it has an impact on how you see life and yourself through a different lens. Even when you appear normal to others. And not being able to recognize your own face or feeling like it’s a face that isn’t yours adds to this. Your sense of personal identity changes.

So I increased my use of make-up, got extra layers in my hair, avoided contact lenses so my glasses could frame my face, felt silly getting dressed up feeling like I shouldn’t have bothered, avoided guys so I didn’t fall into the f***boy trap when I was feeling low, admired how my more confident friends could just expect guys to like them and only took selfies with filters. When one random classmate once told me how beautiful he thought I was, I nearly cried. Then I got angry with myself for how grateful I was to hear that from a random classmate, when it should be me telling myself that. I also had to deal with being unable to fit into some clothes and losing what little muscle mass I had.

Anyone on it can tell you – Prednisolone is a bitch.

I didn’t have any sudden revelation or overwhelming acceptance of who I am, sad to say. But hey, maybe this can just be a friendly reminder to myself and anyone else struggling with Prednisolone that it may not be permanent. And all those frustrating feelings you have, the times you want to cry – or have cried – we’ve all been there. There is a huge community of people who understand completely.

It’s hard for anyone when we live in a world that is image obsessed. But it helps to remember that your personality will always be awesome because you’re a fighter, a listener and a sympathizer.

This post originally appeared on Inside a Mind.

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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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Thinkstock Image By: Grape_vein

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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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Thinkstock photo via Kerkez.

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