How My Support Dog Helps Me Through Life With Chronic Pain

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About two and a half years ago, my husband and I went to the local shelter “just to see” the dogs. (I really should know better. I’m the type of person who would take all of the dogs home if I could.)

During this time, I had really been struggling with health issues. My depression had hit an all time low, and physically, things were going downhill for me and the doctors couldn’t figure out what was going on. (This was shortly before I received the additional diagnoses of lupus and rheumatoid arthritis.)

While we were at the shelter, we came across this shaggy, mid-size (about 50 lbs.) collie mix named Wilson, who I connected with immediately. We asked about him, and the volunteer provided what little information was known about him, and asked if we’d like to play with him outside. The shelter had these great fenced play areas with picnic tables, and so I sat at the picnic table and got to know Wilson a bit better.

 

He approached me cautiously, not out of fear, but concern before turning and sitting on my foot, leaning his head back in my lap for me to pet. This was extremely significant because of past dogs in my family’s life who had done the same with my mom. It was as if those animals who’d crossed over the rainbow bridge were telling me this was my dog.

A few days later, we officially adopted Wilson into our home. Initially, we were going to be the type of pet parents that didn’t allow him on the furniture or feed him people food. (That didn’t last long.) He was classified as an emotional support animal to help me cope with my depression and anxiety, but he seemed to sense how sick I was physically. Where he would play fully with my husband, tug on that toy harder, run faster, jump harder, he was gentle with me.

From the emotional and psychological standpoint, I call Wilson my Angel Dog. He’s brought so much joy into our lives, made me laugh with his goofiness, comforted me when I’m having difficulties, and just brings a sense of calm and peace. But about a year ago, our very smart dog showed me how much he was clued into me.

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I had had a really rough few days where I was essentially living off of pain pills and Glucerna. I spent the majority of the time sleeping and it was just me and Wilson at home.

About mid-morning, I was awakened by the feeling of being pushed by something. When I came to, I realized Wilson was lying next to me in bed pushing me with his paws to wake me up and he didn’t stop pushing until I sat up on the edge of the bed. He then did his “I need to go outside” routine, and I stumbled through the house, heading toward the back door. But rather than go to the back door, Wilson stopped in front of the fridge, watched me for a while, and then looked back at the fridge. It took me a minute, but I realized I was likely hypoglycemic. I grabbed a meal replacement shake out of the fridge, downed it, and only then would Wilson go outside.

I returned to bed for more sleep after he came back in, and a few hours later, found myself repeating a similar pattern. Again, he woke me up by pushing me, but this time it wasn’t food he was after me to get, but water. And this time, he wouldn’t let me go back to sleep forcing me to stay awake. (Which is actually a really good thing because otherwise I would not be sleeping at night.)

He has also helped keep me from having panic attacks, alerted me to low blood sugar episodes and tried to warm my feet by lying on them when I’m having problems with Raynaud’s. Wilson loves to snuggle…he just hasn’t figured out that lying on top of me when I’m having a really high pain day isn’t the way to go sometimes. Wilson tracks me at night, particularly if I’m having a really bad night, and will keep tabs on me. (The night after my most recent surgery he made things really interesting for me. Every time I got out of bed, he would move and lie on the floor so I would have to step over him to return to bed. He made sure he knew where I was, but lifting legs over a dog after abdominal surgery isn’t the most fun thing ever.)

I’m not bringing up this topic to just brag about how awesome my dog is, although he is pretty awesome. There are a lot of positives to pets in the lives of people, regardless of their ability or disability. But when you have a disability, there are also some considerations to take regarding animals.

So, Wilson provides a great deal of services to me. But Wilson, like any pet, requires a great deal of care and has his own needs. For some people with the types of illnesses that chronic pain warriors deal with, the needs of a pet are too great and are more of a responsibility than some can handle. That leads me to: what questions should one ask themselves when considering taking on a pet/emotional support animal/therapy animal/companion animal/service animal?

(There are a variety of differences between an animal that is a pet vs. emotional support animal vs. therapy animal vs. companion animal vs. service animal, and the laws that govern the type of animal and where they are allowed are far more detailed than I wish to get into here. For people who are interested, I encourage you to look to the Americans with Disabilities Act and Regulations on Service Animals for further information.)

Questions to ask before taking on an animal:

1. Why do I want this animal in my life?  

Are you looking to adopt because you saw that Sarah McLachlan SPCA commercial one too many times? Or do you really feel ready to take on an animal with their needs? Have you researched the specific breeds/types of animals and temperaments?  If you adopt a puppy or kitten, are you aware of the increased care requirements you’ll have for a while? If this is a service animal, have you thought about the costs of training and education? These are all things to take into consideration.

2. Will this animal fit into my lifestyle?

Some chronic pain warriors are still able to work full-time, so is this animal going to be alone most of the day? If so, are they able to entertain themselves or will you return home to find things torn up? If you’re fairly sedentary, adopting a high energy animal who requires lots of exercise probably isn’t the way to go. Animals have personalities, too, so if you’re a person who enjoys peace and quiet, bringing a barker home might not be the best way to go.

3. Can I afford this animal?

Vet bills, food, medication, treats, toys…it all adds up. And if your animal becomes chronically ill themselves or requires special food or medication? It can get even pricier.

4. On my bad days, will I be able to exercise/play with this animal as they need to be?

On my extremely bad days, it can be hard for me to let the dog out; is this something you would have to consider?

5.  Is there support for me to turn to if I have to be hospitalized for a length of time because of my illness? 

Or even on those days where you suddenly find yourself stuck at the medical center for 13 hours, is there someone you can call who can help your animal out? I know Wilson can hold it for a while, but a dog can only cross their legs for so long.

And ultimately, the question that needs to be answered is: Will this animal bring more joy and help to my life or will the animal cause too much of a burden on me to care for it in my present health state?

I can’t imagine my life without Wilson in it, but I have the help of my husband for things like bathing him and making sure he gets enough exercise. Wilson is also calm enough of a dog that he doesn’t require constant stimulus, and while he has his hyper moments, that’s not his constant state. He fits into this family perfectly.

I’m all for animals in our lives as I believe they bring great joy and value, but we owe it to those animals to bring joy and value to their lives as well.

Note: Since writing this original blog entry, Wilson has been reclassified as a service animal. He continually surprises me with the ways he’s figured out to help me.

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How Baking Helps Me Cope With Lupus

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I frequently step into my kitchen to bake. Before I gather my ingredients, I think my way through the creation process and put together the finished product in my mind. The excitement, the anticipation!

As I begin my recipes I always have the recipe written down in front of my work space. No matter how many times I have repeated the procedure I always have the words at my fingertips. Nothing can be missed or forgotten – that is one way I have control over the end result.

I have baked nonstop since I began my journey with lupus and Crohn’s disease almost 11 years ago. Baking has been my outlet for coping with the unknowns and uncontrollable side effects and damage that lupus causes.  Even if I cannot eat what I am making (Crohn’s limits my fat intake) I still end up presenting a special someone with a baked gift.

 

The beautiful thing about baking is that only those who are the most patient, delicate and dedicated will end up with a perfect result. There is a process and reason behind every fold, stir and scoop. Some desserts cannot simply be combined in any which way – one must be gently folded into the other. This prevents air from escaping and texture from disappearing.

As I mix my dry ingredients together in one bowl and my wet ingredients into another,  I always feel an overwhelming sense of satisfaction and inspiration as the batter slowly comes together. It smells as it should, the consistency is smooth, the color is ideal and I know right then that I put the effort in and got the batter perfect. The feeling of losing control over my life and feeling slightly off kilter almost all the time while I have battled through the struggles of autoimmune diseases made a devastating impact on my overall mental health.

Wrapping your head around the idea that you do not have full control over this disease and can only do so much to react to its flares tends to leave me baffled. Thankfully outlets such as baking have helped to create a channel to feel more in control and not allow the “what ifs” to enter my mind.

I have always loved receiving a quality cake pan, cookie sheet or pie dish. You need to have good tools in order to give the batter ingredients the support they need to do their job. I choose to educate myself on every medication my doctor suggests in order to know each mechanism of action and further understand how the disease will be affected. Yes, it may seem over-zealous to some; however, you are your best advocate. I know with the right tools in my hand I can find the right doctor for me and be able to utilize his tools to find that stable place…for now.

The pan goes in, and I always say “time to bake!” before I set the timer. Pulling out the lightly golden brown pie or the fluffy and evenly baked cake is utterly satisfying. I have the cooling process down to a science, which helps me unveil a magazine-worthy dessert. Spoiler alert! My creations are not always perfect! I sit there and go through the process in my head to determine what could have gone wrong.  Ironically enough, it usually ends up being something I cannot control – thank you humidity!

But at that point I am able to accept that sometimes it happens and side effects are out of my control. Whether it is the weather or a prescription side effect that causes this hiccup, I know I have to work through it and know I can and will come out the other side.

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My Battle Towards Remission From Lupus

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I have debated sharing my story publicly. I wondered how the message would be received, but then I realized a lot of people with lupus struggle like I do explaining the gravity of what we go through on a daily basis.

That is what most people forget. That this is a daily battle. It doesn’t end just because we are having a better day than yesterday. And we struggle to explain to our family and friends the frustrations we have to reconcile within ourselves.

Maybe, if I share this, it will help someone else feel not so alone on their journey. My goal is remission. Although I have yet to experience remission in the six years since my diagnosis, I am hopeful, and diligent in my journey to get there. I know it is a long process and an often frustrating one. I am battling against my own physical body and I believe a spiritual one as well, but I am strong even on days I do not feel strong.

This is my lupus journey…so far.

 

In January 2010 I returned from a trip to Uganda, Africa. Two days later I woke up burning with fever and immediately went to the hospital knowing I had malaria. Because the United States is not equipped to handle malaria (no, it isn’t contagious; yes, I am fine) I was quarantined and had a million tests run. Because of the amount of tests, some came back with some anomalies. They referred me to a rheumatologist. I didn’t know why. I didn’t have arthritis. After a battery of tests from them as well, I was in fact diagnosed in February with SLE (lupus). I wasn’t given a lot of explanation, just handed a stack of prescriptions and sent home with follow-up appointments every four weeks. I didn’t tell a lot of a lot of people because I didn’t really know what to tell them. All I knew was I had a disease and there was no cure. It all made sense, though.

I’d had these symptoms that had gone unexplained for years. Aching joints, headaches, a bout of mono that lasted almost a year, a rare form of asthma, constant kidney infections, constant and extreme fatigue, “head colds” that lasted months, chest colds that also lasted months…now it all made sense. At least it wasn’t “all in my head.”

Unable to get my symptoms under control after my diagnosis, they started me on chemotherapy treatments, which lasted for six months. It was a rough year, to say the least. I went from being an Air Force Academy Prep and college athlete to barely being able to walk.

In 2012 my lungs took a turn for the worse and I was admitted to the ICU. I was on such high doses of prednisone to control the massive inflammation that they also had to put me on insulin to control my blood sugar. Because I was bedridden I was also put on blood thinners which caused severe nose bleeds that would soak my bed sheets. When I was finally released, I was on 19 prescription medications.

I have been in near kidney failure twice since I was diagnosed and I am currently fighting with my kidneys now. Before I even get out of bed in the morning I take several medications to get my day started. When my joints are stiff, getting out of bed in the morning is the most exhausting thing I will do all day. This also makes me more prone to injury. As an athlete, this is incredibly frustrating and I don’t think I will ever really get used to the changes. Last year I injured my back doing what I love the most – playing volleyball. The injury was so severe I couldn’t walk and even after a month of rehab I still had to use two walking canes to stay mobile.

Now, when I play volleyball I often have to use a professional back brace.
For me, lupus affects my lungs, my joints, my eyes and my kidneys. My photosensitivity has drastically increased as time goes on and I also suffer from debilitating migraines. These migraines cause vision problems, nausea and memory loss. The medicine for them also has extreme side effects. I work with a rheumatologist, nephrologist, neurologist, primary care physician, pulmonologist and chiropractor to keep everything functioning.

Lupus affects everyone differently, which makes it very difficult to diagnose. The stigma of “but you don’t look sick” even begins to fool you. They estimate that while I was diagnosed in 2010, my lupus initially flared in 2003 when I went to military school and possibly as early as 2001 when I suffered a concussion from a wakeboarding accident in high school. Since my diagnosis, I have been working towards remission.

Lupus is also a very misunderstood disease and sharing this information is scary. Those who know me well know I am stubborn and fiercely independent. The last thing I want to be known as or labeled as is “the sick girl.” I work hard to stay healthy.

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I started a new diet recently. It is a specifically tailored ketogenic diet (pretty much no carbs) to help with my migraines. It isn’t a diet to lose weight. It isn’t for vanity. It is for survival, so when someone makes fun of me for it or does something like eat a cookie in my face while laughing, it isn’t funny. This is my life. This is my survival. I am beginning to realize that people just don’t understand what lupus even is. And unless it touches their daily life it is a sad story they can brush by with a look of sympathy. But I am literally just trying to make it through the next five years, the next 10 years, and eventually that will add up to a lifetime. It is that serious. I am living in a body that for whatever reason wants to kill itself.

Some days I feel strong, other days I feel angry and some days I am tired. I seem to go through the stages of grief with each new issue that arises because while it is all lupus-related, it all needs to be dealt with in its own right as well. I have good days and bad days. It is frustrating when you think you are going to have a good day and then by lunch, somehow, all your spoons are gone.

When people find out I have lupus they are generally surprised. I try to keep it that way. This disease does not define me and it never will. My goal is remission. Each day I diligently work towards that goal. My body fights against me, but I was born with a purpose.

This post originally appeared on The Better Half of Me.

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Getting Home Before Midnight: Self-Care Planning With Chronic Illness

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June 7, 6:55 p.m.

I’m standing proud and tall dressed in my new “official school chorus” shirt, generously provided by the parent of one of my students. As I raise my iPhone to my ear to hear the starting pitch (yes, there really is an app for everything), I take a calming breath, ignore the sounds of the crowd and focus on the eager faces of the 53 young children in my chorus.

Tonight we are to sing the National Anthem for our local minor league baseball team and 400 people from our school community have come to cheer us on. With a bright smile to allay the fears of my young charges, I raise my arms and begin to conduct. They sing their hearts out, stand proud and I’m overcome with joy and honored to be given the gift of leading them. And just like that, it’s over. We run off the field as instructed (and because they are 9-11-year-olds they take the instruction to run very literally, leaving me chasing after them) and it’s time for me to assume the role of General. My chaperones jump into action with their clipboards I’ve prepared for them so we can assure all children are safely and orderly returned to the correct parent/guardian that dropped them in my care (they tend to frown when given one that looks similar but isn’t the right model).

Once all have been accounted for, and the last of the chaperones has been thanked, I can enter the game and join my family for a fun night out at the park. This of course means catching up with alums, parents, students and generally spending so much time enjoying myself talking and hugging and laughing that I forget to sit, eat and drink my water. (My husband jokes I don’t really need a seat since I never sit anyway). But nevertheless, I love these moments.

 

The “outside the classroom – OMG she’s human” moments are so crucial to developing relationships with your students and their families. I see sisters I taught from when they were 6 who are now accomplished young women, one about to go off to college. There’s the big brother of one of my current students, a former chorus student who discovered a love of singing in fifth grade who is now off at our next building and mom brings him by “just because he was dying to see you.” I could go on and on (and I tend to, just ask anyone) because these are my “kids.”

Finally, I make my way back to my seat, as my back and neck are screaming, only to find my husband and kids on their way to find me. He knows that, just like Cinderella, my time at the ball(game) is almost up and he needs to get me out before the magic is gone, the clock strikes midnight (OK, more like 9:00 p.m.) and the lupus takes over.

June 8, 6:55 p.m.

Slowly and gingerly, my husband helps me up the stairs. The swelling in my ankles and knees makes one flight feel like Mt. Everest. He has to help me undress and get ready for bed since I just don’t have the strength. I sat too long on the couch. I should have gone up when he told me to a half hour ago (he will love seeing he was right in print – OK, he can have this one). We make sure I have my doses of medication I take before bedtime, iPad, phone and anything else by my bedside. Things hurt and I’m mentally and physically done. My face is on fire from the maylar or “butterfly” rash currently spreading across my cheeks and nose, telltale signs of a lupus flare.

As I struggle to find a comfortable position to rest my weary body, my son comes in to read with me. This is one of the ways we’ve found to stay close as a family, despite the fact that on nights like this, my kids are tucking Mommy in. I know my daughter will be up in a bit and the three of us can have some nice snuggle time before their bedtime…if I can only keep my eyes open.

None of what’s happened tonight is a surprise. In fact, my husband and I planned for it when I set the date for this event back in September. As they say on the popular television show  “Once Upon a Time,” “Magic always comes with a price, deary.” Well, I may not live in Storybrook, the fictional town of the series, but I know that in the land of lupus, fibromyalgia and other chronic illnesses, a night out, fun event or even sometimes a trip to the food store (um…not so glamorous) can require hours to days of recovery.

We all know that as we age we remark that we can’t “bounce back” like we used to. When you live with chronic illness, forget bounce – think belly flop. We’re talking the kind you see at the neighborhood pool and everyone cringes in horror (yet video of it makes the finals of America’s Funniest Home Videos, go figure). The overwhelming fatigue can hit you like a ton of bricks stopping you in your tracks, the kind of fatigue that you’re still tired after you’ve woken up from 10 hours of sleep and need another nap.

Everyone has different ways in which their own body lets them know “I’m shutting you down for repairs” and eventually you learn to listen to it or end up face-planting somewhere (not pleasant, been there, face-planted there, usually involves a ride in a truck with very loud sirens to the “white coat hotel”). So, don’t be as stubborn as I was – learn to listen to your body and realize that rest and recovery is an essential part of your self-care.

Going to bed at 7:00 p.m. is not my ideal (we didn’t even have dessert!) but tonight, this was always part of the self-care plan. We knew not to plan anything for this afternoon or evening as “the price” for last night’s fun was the flare and crash tonight. Hopefully, by getting the rest and recovery time my body needs, I can, if not “bounce,” maybe land a little more gracefully. Just in case, we’ve kept tomorrow’s itinerary after school light as well. These are the lessons learned after too many “belly flops” and way too many “I told you sos” from my husband, who somehow can always spot when it’s a “quarter to midnight” way before I can.

Do I regret going out last night because of the pain I’m in today? Not one bit. I refuse to let these diseases stop me from living the fullest life I can. I refuse to let these diseases rob me and my family of any more amazing memories. I refuse to let these diseases hold me back professionally. But most of all, I refuse to let these diseases rob me of today’s joy because I fear tomorrow’s pain. Today is all we are promised, tomorrow is never a given. Now if you’ll excuse me, there’s an adorable little girl who just climbed into bed with me who needs some cuddles.

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When Someone Referred to Me as the 'Lazy Mom in the Shade'

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It always seems the school year goes slow, then without any warning summer arrives.

I used to dread summer.

Summers are hard for our family. With severe photosensitivity because of my lupus, I have a short window of being able to be outside. Before 9:00 a.m. and after 6:00 p.m., otherwise I am useless for at least a day or two. I spent the summers watching my kids from the window or the shade of a tree. The kids knew I wouldn’t be joining them on the playground or in the pool.

 

Then there was the day, while I was sitting in the shade, when one comment broke me. The “lazy mom.” It was only one comment. My heart hurt. My kids were 4 and 2. I knew they were safe, they knew I was always in view. My kids never complained.

So, why did I let one comment bother me? In all honesty…it was what I thought. I hadn’t dealt with what parenting with lupus would look like.

As the kids got older they never questioned why we went to the park at night or had limited play dates outside. They didn’t know any different.

woman's feet in the shade with just her toes peeking out into the sun

Parenting with lupus will have its challenges. There will be events I miss. Lots of naps. Sudden stays with friends. Visits in the hospital. Dad will cook via take-out. Summer days spent binging on TV. Challenges are what we face every day and have strengthened our family. We wouldn’t have become the people we are without challenges. We have to take the good with the bad. And maybe we appreciate the good a little more.

I don’t dread the summer as I once did. I’ve become quite content to sit under my umbrella. Watching from the shade, I’ve slowly embraced my limitations. I will never be afraid to speak up and share what having lupus is like to someone who is quick to judge. But, most of all, I no longer believe I’m the “lazy mom.”

This post originally appeared on Normal for Us.

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When Do You Tell the Person You're Dating You Have a Chronic Illness?

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A few years back, shortly after my lupus diagnosis, I met this guy who was a friend of a friend. At the time I didn’t think much of it. You meet new people every day, right? We ended up in the same friend group a few times and that’s when we started to talk.

Now at the time I was extremely reserved about telling anyone about my illness, aside from family and close friends. But as time went on and our friendship grew, it was pretty obvious we had feelings for each other. And that’s when I kind of started to freak out. You see, when I was diagnosed I was pretty much under the assumption that no guy could want someone like me with such an unpredictable illness. I thought I’d be too much of a gamble for someone. I wanted to tell him but I felt I missed my window – like I should have told him when I first started getting to know him. Now I was at the point where I was afraid if I was right, and I was too much of a gamble, it would hurt too much to face that. I let these feelings plague me for way too long.

 

It was only months after realizing our personalities didn’t quite mesh and we were better as friends that I told him. And you know what? The world didn’t go up in flames! It was just him casually asking how I was, and I was actually completely honest and told him I had been sick as a result of lupus, and actually this person was pretty awesome about it. It opened the way for a good conversation about what lupus is and what it meant for me and my future.

What have I learned from this? It’s not good to hide things like this that are such a part of who you are and affect your everyday life. I had built it up to be such a huge thing in my mind when it didn’t have to be! Had he reacted how I was afraid he would react, then I would have gotten over it and known for sure it was for the better. But sometimes people will surprise you.

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Thinkstock photo via ArthurHidden.

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