bottles of pills sitting on wood surface

On Monday evening I took my weekly dose of methotrexate which means Tuesday sucked. I couldn’t stay home Tuesday as I usually do. I had a meeting at school and another at church. In the midst of the metho burn and the lupus/fibromyalgia medieval torture techniques, I sought out my kitchen cabinet for some relief before going to bed at 2:30 in the afternoon. Alas, the bottle of Norco was down to four lonely tablets. I stood there debating. Do I take a precious tablet or do I save it for an even rainier day? After quick yet painful deliberation, I left all four huddled together in the bottom of the bottle. I went upstairs to grin and bear it. After all, with these recent attacks on opioid use, these may be my last four. I was already hurting enough to want my legs pulled off, but I might hurt even more next week.

I got that bottle of 30 tablets almost six months ago after being drilled by my doctor about my use to make sure I am not addicted and to make sure I am responsible enough to care for myself. I felt that, as a pain patient, I was believed to be unable to use reason when it comes to my own body.

Don’t I have other options? Certainly.

1. Massage — Works wonders on me! It isn’t covered by my insurance, and at about $100 a session isn’t realistic as an ongoing treatment.

2. Physical therapy — Love it! My insurance covers some of it. But, I am being denied it for some unknown reason, and no one will return my call to explain why. My physical therapist is just as confused as I am.

3. Acupuncture — Also works. It’s also not covered by insurance. While not as expensive as massage, the cost still adds up too quickly. Yes, I understand that it might be a placebo effect. If it works, so what?

4. Other prescription pain meds — I have tried Lyrica, Cymbalta, Amitriptyline, Topomax, and Gabapentin. The Gabapentin works best for me, but makes me sound asleep. Therefore, I take it at bedtime.

5. Over the counter meds — Acetaminophen helps me with headaches and minor pains. It does nothing for the major pain. All the others thin my blood. I am already too short of platelets.

6. Medical cannabis — Been there, done that, wrote the book. It did help me. It also was too much of a burden on my family because of the stigma surrounding it, much like the opioid crisis.

7. Hot baths, stretches, meditation, etc. — Check, check, and check. I do all that and more.

8. Opioids — An option eroding away by government policies, media hype, and well-meaning public out to save me from myself.

I don’t need to be saved from myself. I need to be saved from my lupus. A cure would eradicate much of this discussion. For me, lupus is controllable to some extent. So why is society hell bent on taking away one of my necessary tools to control it? I need my opioid of choice, not to escape the world but to join it.

How can I be viewed as a drug addict when a 30-pill bottle lasts a good six months? Why am I being treated like a child just because I have a chronic disease? I have been using Norco for four years now. Might I become addicted in the future? Maybe, but I doubt it. It should have happened four years ago when I was taking multiple pills a day.

I am not alone in my ability to responsibly use painkillers to control my condition. Far from it. Of course I know people who have struggled with major addiction issues, who lost everything they had to drugs, some even their lives. Who hasn’t? But, who doesn’t know someone with major chronic pain issues? There are millions of us.

I am not going to quote statistics. I will leave that to the experts. I am also not so naive as to believe I could beat addiction should it ever grab hold of me. However, I am currently in the midst of a battle with a disease that wants to steal my very life and everything I hold dear in it. Being a part of my family, having a place in this world — these are the things that matter most to me.

What the h-e-double-hockey-sticks is going on that I and others like me are being denied our rights to pain relief?

Where are our advocates? I haven’t the stamina. When my own doctor says I should be able to double my Gabapentin dose because he can, I haven’t the words to remind him that I am not him. He is twice my size. He does not share my diseases. Has he forgotten that individuals do not all respond the same to medications? Should I change doctors? Do you know how changing doctors looks to a pharmacist or an ER physician looking to write or fill a pain prescription?

Help! Somebody get to that opioid discussion table! I’ve seen Britt Johnson out there working to get our voices heard. Still, we patients are being left in the dust. This needs to change.


Crisp breezes, falling leaves, and beautiful snowflakes are often a welcoming time of year but for those of us with lupus we can feel the aches and pain of the seasonal changes. The cooler air can cause stiff and painful joints among other things. Here are a few simple tips to help ease into this cooler time of season.

1. Hand warmers are amazing for this time of year. I like to wear mine through the cooler months to help prevent the cold setting in and causing those unwanted pains. HotHands hand warmers are amazing, especially if you have an outdoor event you’d like to attend such as going to the pumpkin patch with the family. I like to put them in my hand warmers, pants pockets, and if it’s extremely chilly I will even put them in my socks!

2. Infinity scarves have become my best friend this time of year. Being able to keep any cool air from entering into my shirt or on my neck tends to help keep my body temperature regulated, not to mention they look adorable which is always a plus.

3. Warm beverages throughout the day are a great way to help keep yourself hydrated as well as keep your body warm. Warm tea or a cup of cocoa is always comforting during the cooler months.

4. Always have extra blankets or clothes on hand. We may think we are adequately dressed until we get to a friend’s house or a shopping mall and realize we are freezing. Temperatures fluctuate dramatically from store to store or house to house, so always have a winter survival kit of clothes and blankets in your car handy.

5. A portable heater (used safely and properly) is essential when you have Raynaud’s disease to help keep your fingers and toes nice and toasty on those extremely cold days. Personally I have bouts of extremely cold hands and feet and just a few minutes in front of the portable heater can definitely do the trick to warm them right up.

6. Electric blankets at night are a great trick, or even during the day. It’s like have a heating pad on all your joints and can feel amazing with some relief from the stiff joints.

7. Keep your skin hydrated! Many people with lupus and other autoimmune diseases can suffer from very dry skin, especially in the cooler months. Running a humidifier can help keep humidity in your home, and always apply lotions after showering and before bed.

The fall and winter months can definitely be a challenge but they don’t have to make you miss out on all the festivities. I hope some of my tips can help you enjoy the cooler months a little more comfortably.

We sit in the waiting room as we have so many time before. I can’t help but look around and note it is full of older people. And me. It has been this way for quite some time. You think I would have been used to it by now, having been diagnosed with lupus all those years ago. But it seems each visit brings with it the searing reminder that I am not like the others. Young or old. Because while still young, I need to be here now.

I inhale deep, feeling my anxiety rise, as I scour my purse for an activity for my 2-year-old daughter. Anything to prevent the dreaded meltdown. I can feel what little energy I have pouring out of me as I search, and my aching joints are faithful to remind me of my unrelenting disease. I tell myself we just have to make it through. Make it through one more appointment.

But there are so many appointments.

Too many appointments for me and my girl.

Five minutes pass, and we watch as a tall woman in a white coat and stethoscope exits the waiting room. I can’t help but recall my own white coat and stethoscope tucked carefully away at home. And with it, my career as a nurse practitioner.

I exhale slowly, knowing I wear a different coat now. A stained coat, in need of a good dry cleaning. I am a stay-at-home mama. Or at least that’s what I tell people. It somehow seemed easier than explaining the ins and outs of debilitating disease. I’ve just grown tired of scaring people. And watching the discomfort of my reality rest on their faces.

My reality, like so many with an invisible illness, is far from what it seems. While I have a 2-year-old attached to my side, my life has felt anything but youthful. My reality is that of chemotherapy and hair loss. It is that of prednisone and weight gain. It is all-consuming exhaustion and a wheelchair. It is hip replacement surgery and a handicapped sticker for my car. It is rashes and anemia. It is enlarged lymph nodes and painful swollen joints. It is going from doctor to doctor and jumping from one health crisis to the next. It is feeling beaten down, and too often, out of control on all accounts.

But these are not play date conversations. These are not the type of things you can lead with around the table of juice boxes and animal crackers. It seems the sicker I become, the more irrelevant I feel among my own peer group. Discussions regarding the latest preschool or outdoor adventure couldn’t be further from my reality.

Didn’t they know it took just about all I had to make it to said play date?

I have struggled for a long time with what others think of me. I have never wanted to appear weak, so I have put on a brave face in public only to fall apart in private. But that only works for so long. Because sometimes invisible illness becomes visible.

I have longed for others to see me, not as a “victim” or a “lazy” person, and not as a weak person or “the sick one.” I think too often, healthy people can become numb and even callous as new health crises continue to arise for those of us who battle chronic illness, and without them even realizing it, we are placed in one of the above categories.

But we are more. More than a label or category, and those who stick by us see our gold.

Truthfully, I no longer have time to worry about such things.

Because now I’m a mama.

And that girl of mine, she lights up my whole world.

Even still, most days I feel like I’m drowning.

And I can’t come up for air.

Motherhood for me has come at a price. Because being a mama, to me, means putting her first. Every single time. This has meant less rest, ultimately leading to activation of my disease. It has meant shielding her from the darkness of chronic illness so she can feel safe. It has meant sucking it up in countless waiting rooms when I feel like I’m going to pass out on the ground but stubbornly know I can’t because I need to be strong for my girl. It has meant not doing my hair or even taking a shower every day because I know I’ll need that energy to care for her instead.

It has been said that every mom is faced with guilt of some kind, commonly referred to as “mom guilt.” Being a mom with a chronic illness has added a whole new and unwelcome piece to this pie. More days than I’d like to admit, it is all I can do to get off the couch and play with my girl. My guilt haunts me as I tell my daughter we can’t play outside during most of the day, as I need to avoid all UV exposure. My guilt weighs on me as I watch the dishes pile in the sink, knowing there are three loads of laundry that haven’t been touched in 10 days. My daughter thinks of this pile now as her new fort. All the while my body screams at me for rest.

People often look at my daughter and ask me if this is the happiest time in my life. And I never know how to respond. The joy that my girl has brought to both mine and my husband’s hearts is unexplainable. She is, by far, our best gift in life. But most days I just wish things weren’t so hard. I wish we didn’t have to fight the crushing pressure of my disease.

I wish we could live easy. Even for a little while.

Being a mama is hard.

Being a sick mama is harder.

Sanober Khan says, “This life has been a landscape of pain and still, flowers bloom in it.”

Well, that girl of mine, she is my flower.

I’d like to say I woke up feeling so-and-so, but the reality with lupus is that I have already awoken quite a few times throughout the night; that is if I went to sleep at all. Many people have asked the question, “What does lupus feel like?” Honestly, this can be a tough one to answer, first because every lupus patient’s symptoms can be different and vary in severity. Second, the pain at times can just be indescribable. I am going to do my best to try to put this answer so many ask into words.

If you’ve ever had pneumonia or the flu, you know the kind of sickness that takes your breath away after you walked just a few steps? This is what I feel when I am experiencing on any given day at any chosen time that a lupus flare decides to show up. (Unfortunately for me, I’ve never had the pleasure of seeing a day without a lupus flare since being diagnosed). There are times I have to sit after walking to the bathroom just to catch your breath to be able to walk back.

Take a deep breath. Refreshing, isn’t it? Now imagine with every deep breath your chest has a sharp agonizing pain in it with each deep breath you took, this is what it feels on days when pleurisy (pleurisy is when the pleura, a membrane consisting of a layer of tissue that lines the inner side of the chest cavity and a layer of tissue that surrounds the lungs, becomes inflamed) hits. This can happen to me as often as seven to 10 days out of the month. It’s terrifying and makes you feel as though you’re having a heart attack, which then brings on the ever-so-horrifying panic attack.

It can be quite relaxing to sit and look out the window at the scenery surrounding me — then I start to feel a burn so badly my skin feels like it’s beginning to peel off, only to realize while momentarily enjoying the beauty outside that my skin has came in contact with the sun through the window. This is what lupus and sun exposure is for me.

A refreshing shower after a long day, washing my hair only to end up with a handful of it in my hands — this is lupus.

Have you ever experienced a cold sore, or a blister on your fingers? Now imagine those surrounding your inner mouth and nose. This happens several times a month and is very painful.

We all love to relax and watch a movie with our loved one cozied up; who wouldn’t? Except if your loved one holding your hand made you feel as though every bone in your hand was breaking into a million pieces, while each joint in your body was burning in pain from sitting still for all of an hour and a half from watching a movie curled up with your loved one.

This is just part of what my lupus feels like. I didn’t even touch on the walking up and down stairs,
riding in cars, etc. Maybe this can help you understand a little and empathize with a friend or loved one who may be living with lupus.

So your friend with a chronic illness has rejected your party invitation… again. Or they’ve included a list of terms and conditions just in case they have to bail last minute. What’s up with that? Do they hate you or something? I booked a champagne brunch the other day for the boy’s birthday and thought, why not use it as a real life example to provide insight? Shall we go through the experience together?

Physical and Mental Preparation

I got lucky with this booking. It was only on one specific date, the prices were reasonable, and it had magnificent views on the 43rd floor! I was anticipating his happiness, which fueled my excitement. I checked the date again — perfect. It wasn’t around the “bad weeks” of my period, where extra inflammation occurs.

I started to keep a close watch on my INR (to monitor my blood clotting) using my blood test machine, and adjusted my diet to maintain an optimal range. If I was going to consume alcohol, I had to make sure that my blood wasn’t too thin, and this does not change overnight. Sometimes I need to avoid leafy greens for awhile to normalize it (you heard me right). I made sure that I had enough exercise, especially the day before the brunch itself. That always seems to help take some stress off my body from alcohol consumption. I braced myself for one to two weeks of downtime and possible pain, as alcohol and inflammation go hand in hand.

The Big Day

And so the big day arrived. I pricked my finger and checked my INR again — all good. Of course if my blood had been too thin, I would have stayed clear of the alcohol. My boyfriend did not force me to drink; it was my decision to celebrate with him. I took a sip of champagne to judge its effects. It was delicious, but I started to feel dizzy and ill after only half a glass. So I slid it across the table to the birthday boy, and switched to red wine.

I wondered where the inflammation would strike first; it is always a lucky draw. You have heard the word “inflammation” mentioned a few times by now. What does it mean in this instance? They usually appear as angry red swells that can clump up on any body part. I’ve had big lumps on my forehead before (who knew there were so many blood vessels between that flat patch of skin and skull?!). It struck like clockwork after two hours. The swollen wrist I had from the day before was now a bloated, unbendable chunk of meat. The muscles in my upper arms started to throb with aches, and I had mild vertigo.

A sudden wave of nausea struck me when we stood up to leave. Descending 43 floors wasn’t much fun. Thank goodness there was no one else with us, as I looked unglamorous squatting in my dress. I had forewarned my boyfriend that we might have to hop into a cab straight home after, and this was exactly what happened.

I passed out in bed the moment we got home, and this was just from 2.5 glasses of wine! I was experiencing nausea and swelling without any of the happy effects. That was a bit upsetting, especially after all my careful planning. If I am going to feel sick, at least let me have a bit of fun!

Post Event

I had ran through the possible scenarios in my head, but wasn’t prepared for the internal inflammation that occurred this time. It did cause me to panic a little, as my stomach felt bloated and swollen for days. I worried about internal bleeding, so I kept watch on all my vital signs and daily activities. I am not being paranoid, a chronic illness person doesn’t need much to sustain injury.

I spent the following day in bed unwell, and utilized whatever energy I had to make a simple stew for dinner. It soothed the stomach to my relief, as that was a sign that there were no blockages from gut swelling. I recovered after a few slow days, which was a pleasant surprise. I had been prepared for up to two weeks of discomfort.

What is the Point?

You might have been muttering expletives while reading this piece. Or you might be judging me now for what I did. Why would I even do that, especially when I knew the possible consequences?! Well, I do it for the exact reasons anyone else does — to have a good time! And I do enjoy getting involved in the “normal world” once in a while. It is pretty hit or miss with me when it comes to alcohol, so I save these wildcards for special occasions with my favorite people. On the good days, I actually have a lot of fun, although the downtime is the same. You can imagine the level of exhaustion a “relaxing” Friday night out might bring. The pain and fatigue might even last throughout the whole of the next work week.

Would I do it again? Of course! It’s fun and I get to bond with my friends in a different way. It just requires a lot of planning, and willingness to take some damage (not recommended during bouts of bad flares!). I have also decided long ago that keeping myself in a bubble isn’t exactly being alive either.

Am I advocating for you to go wild and party hard? Of course not. All I wanted to do was use a single experience, to illustrate the amount of effort it can take for us to socialize. “Casual” barbecues have cost me just as much energy. What I am saying is – have some fun if you can, your way!

To view the original post and more stories like this, visit: A Chronic Voice.

Over the last few years I’ve been retraining myself to have a healthier relationship with overlapping autoimmune conditions. I finally realized they’re not going anywhere, so I’d better make some peace with them. In an effort to not punish myself for having systemic lupus (SLE) and rheumatoid arthritis (RA) I’ve had to change my self-talk.

Most of it was easy — don’t say mean things like you’re lazy or it’s all in your head. I know that’s not true. But there’s one thing I had been saying that wasn’t so easy to recognize as harmful:

“I didn’t do anything today.” 

I’ve been off of work for the last four years due to these conditions, including chronic fatigue. Then two months ago, I was diagnosed with stage III and V lupus nephritis, an inflammation of the kidneys connected to SLE. I was immediately started on a chemotherapy infusion medication called cyclophosphamide. With the added infusions, I find myself even more fatigued. But because my days aren’t structured with work or school, I’d find myself saying I did “nothing” all day.

I recently realized saying this is a disservice to myself. Firstly, it’s not true. I did something. I took a shower; that takes a lot of energy these days. I took a nap when I needed to. I stayed hydrated. I knitted two rows on a scarf. I may have even baked banana bread. Saying “I didn’t do anything” actually negates what I did accomplish within the limited amount of ability and energy I have to take care of myself.

It’s very easy to get caught up in the grief of what my life used to be; it’s the underlying cause of what’s going on. I was active in my community. I had a fulfilling career in arts education. I was more involved in my nieces’ lives. I began my master’s. I loved it.

Now, just doing one simple task can be my whole day.

It’s quite a change.

But even in that grief, there’s a place of acceptance that I finally get to embrace. Yes, I’m dealing with overlap autoimmune conditions. No, my life doesn’t look exactly like I thought it would at this stage. But why not honor the one task I was able to accomplish instead of punishing myself for it not being more? Do I need a trophy? No, but self-compassion is good to add in the mix. Why not give to myself what I so easily give to others? If this was a friend or loved one, I’d say, “Your ability in any given moment still doesn’t define the sum of who you are. Your heart does. Your soul does. And I see you.”

So I see you, Tiffany. I see you folded the laundry. I see you napped all day. I see you made a phone call or went to an appointment.

You did it.

You did something.

Now take a break.

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