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Tristen Wuori, on Going to the Beach in the Summer With Lupus

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Tristen Wuori has a master’s degree in marine biology. Before she had a stroke and was diagnosed with lupus, myasthenia gravis, mixed connective tissue disease, antiphospholipid antibody syndrome, fibromyalgia, and sick euthyroid syndrome, the 27-year-old could be found outside exploring every day.

“The beach has always been a piece of my soul, an important piece that I was so excited to share with my son,” Wuori said. “Pregnancy left me disabled, and in addition to a very premature baby, I left with six autoimmune diseases.”

Now, instead of exploring the forest, beach, or wetlands of Washington, Wuori spends most of her days inside. Anytime in the sun is plagued with concern over exacerbating her lupus, which can cause painful rashes or a fever.

When she does venture outdoors, Wuori must be covered from head to toe. “I actually don’t think I would look too shabby in a bikini,” Wuori said. “But I would become very ill if I chose to do so. It is difficult to feel confident and attractive anyways when you are visibly disabled.”

It isn’t just her conditions that make it difficult to get to the beach. As a wheelchair user, accessibility is Wuori’s biggest obstacle. “The inaccessibility of beaches, and so many natural places, has been one of my biggest disappointments after becoming disabled,” Wuori said.

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: How Jesse Marimat Learned to Embrace His Scars

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5 Things All Spoonies Looking for Love Should Remind Themselves

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Being in a relationship isn’t the easiest thing in the world. You have your fights, your “I love you’s,” your laughs, your cries, your “I’m sorries,” and your “Can you sort my meds?” No? Doesn’t sound familiar? Well, for a spoonie with an autoimmune or chronic illness condition, it’s all too real.

I have lupus, a chronic autoimmune inflammatory disease that can affect any part of my body at any time. Lupus makes my immune system attack its own tissues, mostly when I need it the most. Many of my days are spent trying to remember basic information, battling mood swings or trying to stay away from foods that will cause me to flare.

Flare — when you have a relapse in your disease which causes you experience sh*t ton of pain.

For the most part, I have figured a way to manipulate my disease so it works for me, mainly by maintaining my diet and managing my stress. But, there are some things you can’t control. For instance, anxiety attacks that send me into a panic, crying spurts no apparent reason, memory lapses at a drop of a dime, and decision making becomes a difficult milestone to conquer.

Alone, these things may seem like a difficult task for one person. But when introduced into a relationship with a significant other who has no hands-on experience in managing invisible illnesses, it can become quite a burden for someone who does not understand.

And I say burden lightly.

In my relationships I have encountered a number of uncomfortable situations, from breaking down the elements of my illness to crying because I thought I misplaced my earrings. When you enter into a partnership or a friendship you tend to learn what works and what doesn’t. Here are some of the things I took note of during my journey of finding myself and finding someone who understands and empathizes with my health.

1. We deserve it, too.

Don’t you dare think you don’t deserve love because of your condition. Because that’s exactly what it is, a condition — it’s not what defines you. It took me a while to understand that it will take a strong person to love me, but I still deserved love just as much as anyone else. We often feel hesitant and want to stay away from potential partners. I have come to realize that… yes, we should in fact be hesitant. We have been given a curse and a blessing. The person that sees it as a blessing is the person we want by our sides. So don’t hold out just yet. Get funky, see what’s out there. You might find your perfect meal-planning, pill-organizing and understanding significant other.

2. Let them know what’s up.

For many people, the thought of sharing their personal health makes them cringe. The words “I’m sorry,” “You look fine” or the famous “I know what can help” causes many of us anxiety. But, when we are interested in someone, it is a little different. I have had “situationships” (not a legit relationship but still interested in the person enough to explore the possibilities) where I have shared my health too soon and caused a halt in our communication. A lot of things come into play when deciding when to tell someone about your health, like… Do you guys have a soulful connection? Is it long-term? Is it a booty call? Is it a “I don’t really know what’s going on but I like this person” type of thing? Every possibility has a different response (unless you have a very, very serious condition which is essential that you tell them ASAP).

But in the case that your condition is being managed and you have identified the significance of your situationship, I think you should pace yourself and save your valuable information for someone who isn’t just checking in and checking out. We are built to fight everything that is thrown at us. We deserve someone who is strong enough to withstand such life-changing information.

3. Now you’re in…

So now you’re in a relationship and everything is going good. By now you may have had a few flares, anxiety attacks and arguments about why you respond the way you do. Sometimes we honestly can’t even give them an answer. I know personally have trouble trying to figure out why I did something or what we were arguing about the day before. It is important for us to understand that this is a new life for them. As hard as it is for us to let them know what’s going on with us, it’s just as hard for them to comprehend. Sometimes we have to break it down to them and say “Hey, there will be constant changes. Yesterday will never be like tomorrow.” If that’s a hard pill for them to swallow tell them to think of it as “spontaneity.” We may live like every day is our last (because we have no choice) so make sure you let them know that’s what you need in a partner. A ride or die! It’s critical in any relationship to have open communication even when it’s uncomfortable. As long as that’s consistent, everything else will flow.

4. What a spoonie wants, what a spoonie needs…

Whatever makes you happy and set you free cuz’ we need someone to understand us (I hope you sang that just like I did!). “Understanding” is just the cusp. It gets a lot deeper depending on the type of person you are. Are you an empath? Do you work? Do you have children? How does your illness affect you? All these questions come into play when deciding what kind of person we need standing by our sides.

If you’re like me and have a hard time communicating what you’re feeling because you feel bad about ruining plans, having pity put on you, or just don’t want to make people uncomfortable (I’m getting over it!)… We kind of need mind readers. I know, that sounds absurd. But you’ve seen those couples where they don’t even have to speak they just know. It’s actually a real thing called “telepathic love.” We need someone to be able to read our body language, understand our cues when it’s time to leave a dinner party because you ate something shady, or when you’re having a great day and you want to seize the moment. Being spoonies, we also need support in our endeavors and encouragement when we decide to get out of bed. We need that boost that inspires us to do our yoga and eat a healthy breakfast. It’s the little things that matter to us!

5. How to love a spoonie

If you’re reading this on behalf of a loved one or trying to wrap your head around the news that the person you’re with is battling an illness: First a foremost, kudos to you for taking the time to do your own research. That shows a lot of courage and says a lot about your relationship with the person. I’m taking it as if you’ve read this entire article before scrolling down to this section, so you have an an idea of what a spoonie is looking for in their love life. For the words I have failed to express to my past partners, I will bestow on you.

Please remember that I wake up every day hoping that I’ve been living a dream.

Please remember that I never wished to place my hurt onto your shoulders.

Please remember that when I forget, to be patient and remind me.

Please remember to make me smile when I am not feeling good.

Please remember to understand I don’t mean to flake on our plans.

Please remember that I do love you, and that the touch of you may hurt.

Please remember to anticipate what might trigger my illness.

Please remember that sometimes I am not in control.

Please remember that I am strong and stubborn and may need to be tricked in order to be helped.

Please remember that sometimes I lose hope and I need you to continue to love me even at my worst.

Please remember that I cherish you and all you do for me and will try my best to keep that in mind.

Mindfulness is the key.

So now we’ve either come to terms with what we need or verified what we already have is perfect. Always remember to not let your hurdles of health keep you away from the possibilities of a lifetime of love. We are not built to fight by ourselves!

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The Unexpected Gifts My Lupus Has Given Me

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No more trips to the great outdoors or amusement parks with my children. No more dreams of making an archaeological discovery that rewrites our understanding of prehistory. No more shopping trips with that person I mistakenly believed was my friend. No more amazing sexual — well, now, my husband would not appreciate my going there for all of you to read.

Everyone in my circle understands what lupus has taken from me. But this disease has given me and my family some unexpected blessings, too.

I realized this one day more than a year ago when my husband, my primary care giver, was home sick with the flu. While I was up in bed, he was downstairs on the couch, keeping his virus as far away from me as possible. Knowing he was in worse shape than me, I pushed myself to go downstairs to make him chicken noodle soup and tea. Our teenaged son came through the door just as I was serving it up. He took stock of the situation and declared, “Now that is the kind of marriage I want to have someday.” He made me consider the gifts lupus has given us.

Besides an example of a give and take marriage, it has given my children an understanding of what it takes to be a husband and father under difficult circumstances. My husband brings home the bacon, fries it up in the pan and scrubs the pan clean. He cleans up after me, his sick wife, while expressing love and affection to me even though I look nothing like the lovely woman he married some 25 years ago thanks to age, illness and medications. The kids are watching and learning from him, and that excites me.

It has given my husband a wife and children who appreciate and respect him. He works 40 to 80 hours a week at work depending on the due dates of his projects, cleans the house and handles all the kids’ stuff like sports and other activities that I used to handle. Our children are proud of him.

Lupus has given me an appreciation of who I am, what I have and what I can do.

I have a strong, healthy circle of family and friends who support us.

I have discovered a creativity within that has allowed me to focus on what I can do. As a result, I have self-published two books and am working on another.

It has given me the courage to express myself without fear of judgment and rejection.

It has taught me to prioritize. I choose my battles and focus on what is truly important.

It has taught me to stop trying to remove the splinter in another’s eye while this log is in mine. Too many have judged me and my handicapped placard. I don’t want to do that to others. I hope empathy and compassion have taken the place of judgment in my views of others.

Finally, I have learned to look at my husband and my children in a different light. Some days are good and some days are bad, but each day with them is a gift. Seeing them, talking with them, being together is enough to make me smile.

Thank you, lupus, not for what you have taken because I still hate you for that, but for the unexpected gifts you have given. I shall treasure them always.

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The One Thing I Want You to Remember Now That My Lupus Has Returned

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I’ve been hesitant to share this story. I don’t want anyone to worry or be upset. I’m not looking for pity or sympathy. I’m actually not looking for anything. This is more about allowing myself to talk about this, so I can breathe and move forward to heal. It is cathartic for me.

For several years now, my constant companion, lupus, has been sweetly sleeping. In my arrogance, I thought this sleep would be permanent. I’d struggled early in life with this beast and have very much enjoyed the reprieve. Alas, nothing lasts forever.

Janet Beckman

For the last few months, I have been undergoing tests to see why I had a few lab results that came back wonky. I’ve been to two specialists, three hospitals and completed six separate labs. Although I’m not done yet, the results are clear. My lupus has decided to make an encore appearance with a side of kidney disease.

Taking a deep breath, it’s not as bad as it sounds. I’m under the care of a pretty terrific team. I feel completely confident in not only their abilities but also my determination. This situation will improve if for no other reason than I’m too stubborn for it not to.

My hesitancy to share is multifaceted. First, I’ve lost people before when I was sick. I’m not judging or blaming anyone. This stuff gets ugly. It’s not for the weak. And I’m sure I’m even a bigger pain to deal with when I’m not feeling well. So if you’re in my life and this mess is too much for you, it’s OK. As I stated above, I’m not asking for anything. I just need to be able to admit that I have something going on and stop worrying how my medical issues might affect others. After all, it’s happening to me.

Second, I know very well-meaning people will try to give me advice. They’ll tell me what I should or shouldn’t eat. Maybe I should juice. Maybe I should take supplements. Maybe some miracle cure that your neighbor’s aunt’s second cousin told you about is the way to go. Please understand I appreciate any concern about my well-being, but I’m pretty solid in my diet and exercise and sleep plans. None of what is happening is my fault or the result of my own negligence. Remember, I’ve been on this carousel before. I plan to use my prior knowledge and the guide of my trusted medical community to ensure I can exit the ride.

I apologize for any inappropriate jokes I make about this situation. Misplaced and twisted humor is a coping skill that I’ve perfected all these years. I love making jokes at my own expense. It causes laughter and makes me happy, especially if I make someone else feel uncomfortable. Feel free to join in. I can’t go down this road being morose. That doesn’t work for me. Sarcasm, dry humor and generally not taking things too seriously is how this is going to work.

If you are still reading this, thank you. My ADHD meds have worn off and this could be a bit hard to follow. If you are in my life and are gonna stick around for the carnival, get comfy. Ask questions. I’m not shy about this. If you are willing to help out in any way, let me know, but only if you mean it. I don’t need any specific help at this time, but it would be great to know I have people I can count on if I get to a point where I do. And it would be super helpful if that support is genuine.

And lastly, please remember I am still me. I’m still the person you know, and this isn’t going to change that. I will still want to go out and have fun. I will still want to see people and volunteer with the animals. I will still want to do normal people things. I’m not sure how much future treatment might limit that, but I’m not going to be a breakable china doll that you have to be careful with. It will help me a lot just to be treated the same as always, with the understanding that I might just be a little off. 

And finally — educate yourself. Lupus is in my DNA. It’s hard-wired. It’s not something that can be cured, and it will never go away. But you can get treatment, and you can get better. That’s what I’m going to do.

A version of this post originally appeared on Medium.

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When a Person Thought I Was Undergoing Chemo for Cancer, Not Lupus

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I was recently asked by an acquaintance what kind of cancer I had since I’m undergoing chemotherapy. When I informed this person I didn’t have cancer, you would have thought I just told her I was a unicorn flying over a rainbow.

It’s unfortunate there is such a misconception that immunosuppressant therapy is only for cancer patients. This saddens me because it proves there’s a lack of education and awareness concerning autoimmune diseases. If people only really knew what some people endure day in and day out with an autoimmune disease.

Ironically, my husband just overcame kidney cancer without a single dose of chemotherapy, yet here I am doing chemotherapy without cancer. This truly baffles people, and honestly, sometimes it baffles me, too.

Truth be told, I had no clue what lupus was after my doctors first told me about it. I also had no clue that as the disease progressed that chemotherapy was in the treatment plan for me.

Another misconception is that immunosuppressant therapy cures autoimmune diseases, which is not true because there is no cure for lupus at this point. The use of these drugs for diseases such as lupus is to slow the progression of the disease and to help control an overactive immune system with the hope of putting the disease in remission.

Many have asked if lupus is a form of cancer, since cancer patients can also be treated with chemotherapy. No, lupus is not a cancer, nor is cancer lupus.

The dosage of chemotherapy drugs for cancer patients is much higher than for those with autoimmune diseases like lupus and rheumatoid arthritis, although the side effects can be just as severe as someone receiving higher dosages. For myself, I have severe nausea, hair loss and extreme fatigue. Common side effects can include infertility, diarrhea, low white blood cell counts and, of course, those I’m currently experiencing.

I’m only about two months into my chemo treatments. My first round was an IV treatment, and I had an allergic reaction, so we have decided to go the oral route this time.

I have yet to see any positive changes. Rheumatologists agree it can take weeks to months to see benefits of this form of treatment for autoimmune diseases. The benefits are seen gradually.

The more we can provide education on autoimmune diseases, the more people can understand and empathize with our situations. The more people understand the diseases, the more they can understand our treatments.

Lead photo source: Thinkstock Images

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When People Said It's 'Selfish' to Go for My Dreams Despite My Illness

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I’ve often wondered how many people give up on their dreams once they have been diagnosed with a chronic illness. I can remember when I was in college and getting my official diagnosis of lupus, then going through skin cancer, wondering how the hell am I going to do this, but you know what, I did it — even when people told me it was probably best to take a break and just take care of myself, but I personally believe taking care of myself also means not giving up on life and my dreams.

I actually had people say, “Isn’t it selfish to continue your dreams of obtaining a degree because if something happens to you, you’re leaving behind debt for your husband and children.” Wow is all I could really think, wow because I let these words actually keep me from going to law school. Yes I obtained my Associate’s degree, but these words haunted me, so much so that I never followed what then was my dream!

It was my husband though who encouraged me to never give up on my dreams no matter what the situation may be. That I can’t live my life thinking I may die tomorrow, or I won’t live today. His support encouraged me to enroll back in school to continue with my Bachelor’s degree. Unfortunately due to my medical conditions I ended up having to medically withdraw before I could graduate. I am OK with the outcome only because I know I gave it my all until I absolutely couldn’t go any further.

Unfortunately my diseases have progressed even further to the point where I am unable to work outside of the home. This didn’t discourage me — it just led me to what I found to be a new passion.

Through all of this I found a passion I continue to chase: starting a chronic illness support group. Helping others has always been something I have felt passionate about, and now it’s something I do on a daily basis and it’s rewarding beyond words. Some think I am strange because I make no money from this, but life isn’t always about making the most money to be happy, it’s about filling your heart with what’s rewarding.

Finding a passion when living with chronic illness is therapeutic. You need to find what makes you happy, because even on our worst days we need to know there is something to look forward to. Finding something that brings you tranquility and joy is invaluable.

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