5 Products That Are Helpful for Me as Someone With Sjogren's Syndrome

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For those of us with Sjogren’s syndrome, life can be full of unpredictable complications. This means we have to be prepared at all times. Usually, I do this by carrying a purse full of stuff others might not even think about. Sometimes it takes an entire extra bag of stuff.

But there is something I have learned in my 21 years of being diagnosed and listening to my body and its triggers: there are things that reduce the need for some of this excess stuff. There are actual products that have been invented that help me as a person with Sjogren’s, though I doubt that was their original intention. Here are my favorites and why:

1. My tablet: OK, this is not a new invention, but as an English Lit major, I love to read. And I am quite good at it, meaning I can devour a book in a day or two tops. I never thought I would give up my paper books. I love the smell, the turn of the page, the feel… But lately, my hands have been getting weaker, and I have started to drop the books while I am reading. It is also getting harder to turn the pages due to my essential tremor. Shaky fingers make everything more difficult for me. So I switched to ebooks. No more dropsies, no more hand cramps, and the back lighting option is so much easier on the eyes that it eliminates headaches for me as well!

 

2. Migraine glasses: These have eliminated a lot of tension headaches for me and reduced many of my trigeminal headaches. They are designed for people with extreme light sensitivity. And as people with Sjogren’s, so many of us have that issue due to our extremely dry eyes. These have a pleasant pink hue, and I am currently rocking the over Rx pair before I decide if it’s worth it to tint my everyday-wear glasses.

3. Wrap shoes: I know, you might be thinking, what? These are relatively new on the market, but I was intrigued when I saw them. Sjogren’s can cause neuropathy. Not in all of us, but from reading my support group pages, it seems to me a great many of us have it. At this point, I really cannot feel my feet. So I get into a lot of trouble because I love walking around barefoot. Enter these wrap shoes. The sole is rubber, the top is rubber and fabric. The can be worn indoors and out. Not exactly for rock climbing, but then again, when was the last time I went rock climbing? They are comfortable, easy, and protective. What else do I need in my oh so hectic (LOL) life?

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4. Litter boxes: There are a lot of new “scoop free” litter boxes out there. With three cats and three recorded back fractures (only two of which I remember — go figure), scooping each and every clumpy thingy became impossible. My new sift tray system has made cleaning three boxes quicker than cleaning one was previously! My back feels so much better with these. And in the long run, the litter isn’t getting wasted, adding to the overall benefits of this system.

Blue water bottle

5. Light-up water bottle: My overall favorite is my new water bottle. Though I wish it held more, its sensor syncs with my phone and keeps me on track with my hydration. As someone with Sjogren’s, I need to drink more than the average person. But as an average person, I sometimes get caught up with day-to-day activities — talking, watching a movie, running errands… If my own thirst does not become overwhelming, I can often forget to keep up my hydration at regular intervals like I should. Like we all should, to be honest. I can program this bottle to my hydration needs and it will track my intake and remind me with texts and flashing lights when I am falling behind. To be honest, even the best of us could use reminders like this. It has been a real eye-opener about my drinking habits!

I know to some of you, these objects may seem odd and a waste of money, but these items have been the answer to problems I have been struggling with on a daily basis. And I totally understand that not all people with Sjogren’s will develop all the same symptoms, but knowing there are products out there just in case, at least in my mind, could be really helpful if the need arises. I spent months thinking about and researching these items, and then thinking about trying them. They all actually worked for me. By writing this, I am hoping to bring some hidden but helpful products into the light.

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What I Want Lorde to Understand About Autoimmune Disease

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Dear Lorde,

First off, I want to start out by saying your music has literally seen me through all kinds of sh*t. It has seen me through my lonely sophomore year at university. But most important to me is that it has seen me through the last three which have been filled with emergency room visits, hospital stays, doctors’ appointments, and multiple surgeries. Song like “Bravado,” “Glory and Gore,” “Swinging Party,” and “Biting Down” helped me keep my head up and continue to fight. They are anthems for me. You may not have realized at the time, but you are connecting to a group of people who need fight songs. Who needs songs and music that make them feel like other people are pushing through. I know you didn’t mean to and these songs don’t have the same meaning to you but that’s the beauty of art. You make art and by making this art you connected with me, a person with an autoimmune disease.

That’s why I’m writing this letter to explain why your words — how you said being friends with famous people like Taylor Swift is “like having a friend with very specific allergies. There are certain places you can’t go together. Certain things you can’t do. There are these different sets of considerations within the friendship. It’s like having a friend with an autoimmune disease” — are hurtful to me.

I’m not writing to scold you or make you feel like you’re an awful person. I don’t know you but I don’t believe you could be an awful or cruel person. I just want to let you know where I’m coming from as a true and devoted fan. Every friendship has it own set of struggles. I have no doubt it can be difficult to be friends with Taylor Swift. She is always surrounded by the media. But being unable to escape the media and being unable to escape your body are two very different things. I don’t pretend to know what it is like for Taylor. You shouldn’t assume to know what it is like to be us.

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What makes your statement hurtful is that everyone I know in the autoimmune disease community already feels extremely guilty. We feel bad for all the canceled plans, all the things we want to do but can’t. We feel extremely guilty because we aren’t the same people we once were and that others have to actively sacrifice and continued to decide to be our friends. I have been blessed with a loyal group of friends but even with that loyal group of friends there are times when I see them freeze because they don’t know what to say or do. There are times when I can see the frustration on their faces and I don’t know if tomorrow they will wake up and decide being my friend and dealing with my issues are too much for them.

I know we plan ahead when we go out and I know they get annoyed when we have been planning to go out for a month and the night comes and I can’t move from my bed. They try to hide it but I’ve seen it. I try to push all these thoughts to back of my mind but my body is constantly reminding me of my limitations. So for someone of your status and platform to validate that my limitation can be taxing on a friendship is a bit crushing.

I got my official diagnosis of Sjogren’s syndrome which is a systematic disease that can affect your joints and your organs. It’s mostly know for causing dry eyes and mouth which come with their own sets of complications like not being able to cry or swallow your favorite foods. So I’m new to this community. But I’m not new to these problems. They have been going on for a majority of my life. It was a relief to have answers in the form of my diagnosis but it was also devastating to know I would live like this forever. I know you said you f***ked up and that you are sorry, but I didn’t want you walk away from this without knowing why or what is wrong with your statement.

This does not change how I feel about you. I love you and your music. We all say things sometimes without understanding why these things can be hurtful. I know I’m guilty of this. I will still try to see you on your North American tour and mostly importantly if I’m having a bad flare day I will still blast “Liability” and “Liability Reprise” because even if you didn’t mean for it to be, it represents my feelings about my relationships now that I have this illness. So thank you for your beautiful music.

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Photo by Constanza.CH via Flickr

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Yes, I Have Anxiety, and No, My Chronic Disease Isn't 'In My Head'

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Many people trying to find answers find themselves here. You’re in physical pain, experiencing bizarre symptoms for something yet to be discovered. You lay around with debilitating fatigue, looking to Google to guide you to a health forum with other people like yourself. They understand you.

You’ve already been through a handful of doctors. Some are charming and respectful, tastefully explaining they don’t know how to treat you. There are others who are quite the opposite — you know, the ones you wished you never saw. They question the validity of your symptoms. “Oh, you’re tired all the time? Do you have suicidal thoughts or actions?” You already know what they are getting at but you say, “No.” They try to argue with you, explaining that depression isn’t always being sad but it can be fatigue, too. Again, you protest. They send you on your way with a diagnosis of depression and a prescription for an SSRI. Or maybe you were dismissed like I was when you went to your primary doctor. You had labs that showed an autoimmune disease, but again you were dismissed and later fired by the doctor because they didn’t believe the labs (or even ask to look at them) and thought your only diagnosis was anxiety.

Well, guess what? I do.

I’ve had anxiety since my symptoms arose. I began to get anxious because nobody believed me. What I felt, what I noticed, well, that was apparently “normal.”

I saw roughly 10 doctors before I was diagnosed with undifferentiated connective tissue disorder (UCTD) and later on Sjogren’s syndrome. I was relieved. Let me repeat that. I was relieved. You know that moment you get your acceptance letter in the mail from the university of your dreams? That was me, shaking, crying, and thanking God that someone listened to me. Someone talked with me (not to me), they dug a little deeper and found an answer. All the heartbreak, family members telling me I was lazy, that I worked out and nothing was wrong with me because I looked healthy. (Now isn’t this sad? Was I relieved that I had an untreatable disease? No. Just relieved that what I felt was real).

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This was my moment, though. The moment that I actually felt like I could relax for a second and just breathe, because even though there isn’t a cure I still knew that I had an answer, and with that answer I had hope.

I started getting referred to other doctors for my bizarre symptoms. In the end they weren’t that bizarre. Uncommon? Sure. But “crazy,” no. I now have a handful of specialists who help me manage this disease and a year later I’m happy to report that I’m doing pretty well.

Yes, I do have anxiety. I have anxiety when I’m in that moment of pre-syncope and I don’t want to pass out in front of people. I have anxiety when I see a new doctor. I’m defensive and stern when they throw in their opinions. But that’s OK.

The only thing that is “all in my head” is my anxiety and I’ve learned to accept that and cope with it, knowing it doesn’t make my autoimmune disease any less real.

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Thinkstock photo by Favor_of_God

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I'm Not 'Sad' or 'Angry,' I'm Just Focused on Masking My Pain

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I have such a stern face. Every day. And some people are curious why. Why do you look so sad? So angry? So concentrated? The truth is, I am concentrating. I am concentrating so hard, all the time. You could call it RBF, but I’m not resting.

You see, I have a condition that causes me pain. Many people do. My condition, specifically, causes me to have a chronic headache. Me and my headache, actually, just celebrated our fourth anniversary this past February. She and I try so hard to make peace. Or, rather, I’m continuously trying to make peace with her. And the fatigue, that’s just something else. My body feels so heavy compared to the flesh, blood, bones and muscle it’s made of. My feet should not feel so tired, my hands so heavy.

Very few people in my life know about the ways I’m struggling. My family, of course, my best friend, my roommate, my boss and a few coworkers. Part of this is just my quiet, listening persona. Part of this is shame (which I would tell anyone struggling but myself that you do not deserve shame).

This shame leads me to do a lot of things to cover up symptoms. I don’t talk so much about the fact I have a handicap permit so I can make it to my classes. I don’t talk about how much I sleep. I don’t talk about how I spend my spring break going to different specialist appointments instead of going to the beach. I don’t talk about how I would rather spend that whole week in bed because I’m so worn from the simple day-to-day of going to classes, going to get groceries, doing homework and making myself food. I don’t talk about how heavy, how tired, how fatigued, how pained I feel every day. Because somehow I’ve convinced myself that this thing that sets me apart is something to be ashamed of. Logically I know it’s not, but emotionally I’m not there yet.

I am very aware of how my body presents these symptoms. Some of these I can’t really hide all that well. I have gained weight over the past two or three years. I walk slowly now. It wears me out just sitting up straight, just standing. I look visibly shorter because of how heavy I feel just being upright. But some things I can hide. I know if I’m not careful, the pain and fatigue show in my face. This is why I look so stern. Because I am concentrating. For some reason, I have convinced myself that it makes my life a little easier not having to explain things to everyone I interact with, and for everyone else, it allows them to avoid feeling uncomfortable in such a conversation.

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So the stern face. Yes, I’m OK. As OK as I get. But I’m getting through it.

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Thinkstock photo via thomasandreas.

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Why I'm Talking About My Life With Sjögren's Syndrome This April

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April is Sjögren’s Syndrome Awareness Month.

Sjögren’s is an autoimmune disorder that attacks the secretion glands in your body, but Sjögren’s is more than just the occasional dry eye or mouth.

I was diagnosed with Sjögren’s at the age of 22; the same year I was also diagnosed with Hashimoto’s thyroiditis and fibromyalgia. I have been fighting chronic Lyme disease and unspecified hypothyroidism since the age of 18 and chronic migraines since the age of 4. Growing up playing basketball, softball, soccer and field hockey (which I played competitively at the collegiate level and now coach for my high school alma mater), I was always on the move. Suddenly that all came to a halt and now I deal with a different reality.

Sjögren’s is an autoimmune disease, meaning that the body is attacking the healthy cells in the body, causing more issues than not. Not only does it cause severe keratoconjunctivitis sicca (dry eyes) and xerostomia (dry mouth), Sjögren’s can also cause dysfunction in other organs, such as the GI tract, kidneys, blood vessels, liver, lungs, pancreas and nervous system. It can cause chronic myalgia, severe inflammation in joints and fatigue and can also contribute to mental disorders such as anxiety and depression.

For those affected by Sjögren’s, most common over-the-counter lubricating eye drops do not relieve the dry, gritty pain that Sjögren’s causes. Vaginal dryness is also caused by Sjögren’s, which over-the-counter lubricants do not relieve. Not only does vaginal dryness effect one’s sex life because of unpleasant and painful intercourse, but it can also cause regular yeast and/or bacterial infections.

Imagine waking up with heavy chains weighing you down every day, dark circles so dark that even the best high end concealer won’t hide. Most days it’s impossible to get out of bed as a result of the widespread pain. Showering can be exhausting and dry shampoo will become your best friend.

Imagine eyes so dry that your lids stick to your eyes. Eyes so dry you develop ulcers on your eye due the use of contact lenses.

Imagine a mouth so dry that your tongue is covered with a white film and swallowing becomes difficult because of the lack of salvia. No matter the amount of fluids ingested, your mouth consistently stays dry, causing excessive thirst and, in many cases, tooth decay.

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Sjögren’s may have changed me, but that is not necessarily a negative thing. I know I am the strongest I have ever been. Being in my 20s and battling chronic illnesses, each day is a struggle. No day is the same, but I keep fighting. Because of Sjögren’s I have learned to become a professional liar. I can fake a smile better than most, and I have mastered hiding the pain behind my eyes. Sjögren’s has yet to stop me; I still work full-time as a phlebotomist and coach field hockey year-round.

This is my life. This is what I have learned to deal with. No amount of sleep will “cure me.” I hurt, my joints swell and something as simple as applying pressure to a gauze pad or tying a tourniquet causes extreme pain to flood over me which has put me in tears at work. Whether I am having a low pain day or a full blown flare-up, I push myself past the point that most people would give up. I keep fighting and I am chronically kicking Sjögren’s ass.

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Lead photos via Sjögren’s Syndrome Foundation Facebook page.

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5 Reasons I Value My 'Bucket List' as Someone With a Chronic Illness

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The term “bucket list” isn’t new. Creating a list of things to do before you die has become increasingly popular, with lifestyle blogs and online videos of people’s progress in crossing things off their lists. I have had a bucket list for years, although it had nothing to do with actually kicking the bucket. It’s not a “seize the day” or “live like there is no tomorrow”-type of list. I don’t look at a bucket list in terms of death, but in terms of life.

My bucket list is a written reminder of all of the things I want to do or accomplish in my lifetime. Some of the things on my current 70 item list include:

1.  Float in the Dead Sea
2. See penguins in South Africa
3. Write and publish a book
4. Go to a NFL football game
5. Meet Venus Williams (who has Sjogren’s syndrome, too!)
6. Go on a safari/game drive
7. Ride in a tuk tuk
8. Ride on the Philadelphia Zoo Balloon
9. Eat a beef wellington from a Gordon Ramsey restaurant
10. Be debt-free

Recently my chronic illnesses started to severely impact my quality of life. I decided that there was going to be more of a sense of urgency to the list. Not because I am going to kick the bucket, but because I want to actually fulfill these dreams instead of just looking at them on paper and making excuses for not acting.

Here are the five reasons why my bucket list is important to me:

1. Live For Experiences, Not Materials

The act of creating a bucket list has helped me realize what I value the most. I have realized that experiences are more valuable in my life than material things. I want to cherish the memories of those experiences because those memories will last a lifetime.

2. Prevent Complacency

Living with chronic illness, it is so easy for me to get so consumed by physical symptoms, mental health, doctor appointments, finances, and hospitalizations. Balancing those tasks with every day household chores, work and a social life can be difficult and daunting. It is easy to become content because of the worry of an additional burden or believing there is no sense in fighting. It is stressful and sometimes all-encompassing to deal with these burdens. However, I think complacency can cause serious consequences. My bucket list provides me with a list of things that I want to do and not the things in life that I have to do. They give me motivation to work towards bettering my life and providing me with experiences that I have only dreamed of.

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3. Provides a Sense of Hope

I have a lot of goals in my life, mainly that have focused on my career or my perception of success. However, these goals are not my dreams. I think we often work towards our goals in planning for success, but we often disregard our dreams. My bucket list enables me to see my written dreams and start planning for them. Writing these dreams down makes them more real and gives me a sense of both responsibility and accountability. It gives me hope for the future that there is a possibility to fulfill my dreams and something to look forward to. I don’t want to let myself down. As a person with a chronic illness, hope is important and is what motivates me to keep fighting for my quality of life.

4. Keep Me Active

As a person with chronic illness, it is so easy for me to stay in bed all day or not want to do anything because of my physical or mental health symptoms. However, my bucket list helps keep me active. All of the items on my bucket list require some sort of planning, whether it be saving money, making time or just the simple task of making a reservation. Once I succeed and cross another thing off my list, it energizes me to keep going. The items allow me to get out of the house and keep me moving. I can stay engaged with other people and not feel as isolated, as I continue to learn, grow and experience new things.

5. Give a Sense of Control

I am a person who loves control, so dealing with chronic illness is very difficult for me. I sometimes have very little control over my situation and even my body. However, I have control over every item on my bucket list. If it is no longer my dream, I can remove it without feeling guilty. If I come up with something new that peaks my interest, I can add it to the list. I also have control over when and how these items get crossed off. This bucket list is for no one but myself and I have control over every aspect of it.

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