When Your Illness Ages You Before Your Time

For a long time I have battled with my illness – not because it makes me sick, but because emotionally, I hate how sick it makes me. I’m a 20-something, who should be out with her friends.

I have always been angry that it took my youth away from me. I was angry that I would be at home with my walker instead of out at bars with friends, or at carnivals, concerts, or doing just about anything that wasn’t based around taking meds, refilling meds, doctors appointments, trying to get rid of the chronic pain, and trying to just deal with all of the above.

When I did go out with my cane or walker, I would pass girls my age on the street who were able-bodied and seemed smiling and happy. For me, every time I confronted that scenario, it just represented everything that had been taken from me by my illness – the land of youth, the land of spontaneity, adventure, and running through parks in the summer barefoot.

And this is not to say that chronic illness makes you old literally. As you will see, with a quick glance around the Mighty site, it sort of does. It makes you old before your time.

During the time while I was waiting for my diagnosis, I sat at home, an arm chair warrior, while my friends could have done a season abroad or a trimester of pregnancy in that amount of time. They broke up and got back together, had new flames and left old ones, completed courses, got fired and got new jobs, and had all sorts of news. Meanwhile, all I had to tell them about was, no, haven’t heard back from the doctor yet. I’m still sick in bed.

I remember that time well. I was 22 and a half years old when I was diagnosed with lupus. Now, turning 29 next week, I see those years in between as a mixed bag of some of the best and some of the worst, but they are not what I pictured for my 20s, or what most people picture for their 20s. They are filled with loss and pain, and many other things, because of my illness.

A big part of losing your youth is due to losing the things that youth represents, and what we may associate with it or that comes along with it. For example: When you take medications, you aren’t supposed to drink. This is very taboo and nobody really talks about it But, this is important – especially with conditions like lupus. Your life sustaining organs are at risk with that.

Over these six or so years, I have tried just about everything I could to “stay young and hip” while I was in fact becoming old due to my illness. I tried the alcohol thing. I tried a high-fat, fuck-you lupus and kale diet, thinking to myself, “What’s the kale gonna really do when I’m in this much pain anyway?” I also (unintentionally) tried retaining youth with its characteristic of poor sleep habits, living in a land of Netflix, while eating fast food. When doctors asked me why I was so stupid, I would reply, “You don’t know what it’s like to have an illness and be young, do you?”

Because they don’t. And you’ll know this, if you have chronic illness and see doctors, who don’t understand.

Having an illness and being young at the same time means wanting to remain young. It means wanting to go out with that cute guy and not be embarrassed by your cane – especially when you have to cane your way down the long aisle if he chooses a middle seat at the movie theater. Or, it means that when he takes you to a restaurant that was a “surprise,” it turns out to be up three flights of stairs – and on a bad pain day. Then he never calls again.

Two photos of the writer. To the left she's holding a drink, to the right she's walking with a walker.

It means being on a date or at anyone’s house and getting a nausea wave and they all just have to understand while you hide in the bathroom, or at the restaurant in the toilets. It means balancing that act with a smile and then resuming, just as quickly, the act of, “So, what did your boyfriend say about your new dress?” and going back to just munching on some chips, secretly hoping you didn’t get puke in your hair.

It means not being able to go out as much. It means passing on that big concert, or maybe taking online school instead of university, or a combination of both. It means hoping to have friends who will understand that. It means making new friends and a new version of fun that is healthier for your body.

It means wanting to be able to make your own choices such as staying up all night giggling with your girlfriends over a bottle of wine and maybe having a smoke, with some chocolate frozen yoghurt – if you feel like it. Instead, your chronic fatigue and pain has you laid up in bed around 9 p.m., so the good friends will come cuddle in bed and watch movies with you there.

It means grieving all of this, too, just like you do when you grieved your illness diagnosis.

People who are young and sick have to grieve two things:

1. The youth they could have had. The one they have lost. The one that was taken by their illness.

2. The future they could have had. The future that is now different because of illness.

We have to find something else, something better, that will replace the hole that the grief leaves.

I set out to write this to share my experience with other young girls who have lupus and chronic illness. Because, for too long, I tried to keep one foot in the land of, “Hey, I’m healthy, fine and still in my 20s,” and then the other foot in the, “this foot hurts from trying to balance all this and I’m also a bit tired standing up from all this chronic pain,” land.

And it is an all encompassing grief.

Every time I miss out on something fun, turn down a date or leave a party early, I come home wrecked. Not just in pain, but more so from a sadness that this is my life now. Visions of me prior to my illness will play in my head and make me angry. Yet, with each day and over time, I have accepted my new normal and am in my own way adjusting to it.

Part of adjusting to it is letting go of the connection between things that youth typically represents in society, or letting go of what particular things you idealized as being related to being young for you.

For example: Its always made me feel awkward, annoyed, and almost proved how much I’ve lost, when I have to turn down that drink or turn down going on that date because of chemo or a bad pain day, or any number of reasons. I would get angry and want to try anyway, so that I could feel young again.

In time, I learned this was a bad idea and stopped. I started listening to my body. I realized that the only reason it upset me to begin with was because I was associating having that drink, going to that party, or going to that concert with being young – something that I couldn’t do or really be anymore. I found other things to replace it, like neat nonalcoholic drinks and I also started making my own vitamin water with fresh fruit. I found other hobbies and activities that I enjoyed, and in time they became habit.

Sex is another one of these “things” where illness and youth interface – like that one time when I had to delicately find a way to tell my one night stand that my knees hurt.

And, it’s hard and emotionally challenging to have to go from being young, foot loose and fancy free, to living with limitations. Instead I’m living in a way where each choice that I make affects my health, and where my health affects my choices. I’m no longer living by fun or my social calendar anymore.

These points are important because they show that being young and sick isn’t just about grieving the youth that illness takes with it. Being young and sick means trying to live a delicate balance of still being young and yourself, but also while being sick.

It means that even though we have lost a portion of our youth, that doesn’t take away our desire for it or the things youth represents to us.

When I go to the ER, I am not texting my friends about my symptoms. I am texting my friends about the hot ambulance guys. Maybe after we discuss that and their uniforms, then we talk about the pain in my chest. She’ll say something like, “I see you are using your time there wisely,” to cheer me up, and I’ll laugh.

When I wake up in the morning, I take my pain meds, and then I worry about what I’m going to wear – just as much as the next girl. I want my cane to match my outfits.

I want to go to grad school and actually sit in class. Sit, mind you, without my knees hurting – and I want to walk around campus, and be just like anyone my age.

I don’t want to come home early from parties to rest, or get sick at a dinner party because of my treatment, or pack a medication bag the size of a first aid kid when I go stay at someone’s house…And I don’t want to become upset if I forget the meds to deal with the side effects of those meds.

I just want to be balance being young and sick, and so do we all.

It is maybe hardest, because people think that when you get sick at a young age, you lose all:

1. Ability to be still be young, because you are so sick.

2. That you lose your desire for the regular, normal young person things, because of the stereotypes around what being sick means.

But I can tell you, just from my experience, that this isn’t true. I do not desire these things any less than a regular 20-something year old girl would because I have multiple chronic conditions.

I want just as much as the next girl to sleep with Ryan Gosling. I want all the things that any girl my age wants. It’s just that I can’t always have them.

Being young and sick is about finding and keeping a foot in the place where you can still enjoy being young, but also be sick at the same time.

Have I figured that out yet? No. But I’m trying.

A part of me doesn’t know if I’ll ever fully realize the grief for my lost youth. A part of me feels like I’ve gotten a second chance at life, a different life, one that was maybe better for me than the one before…Like having two bikes and you lost your favorite bike and you’ve been given a different bike that maybe, in the beginning, you don’t really like as much. Maybe in time you’ll learn that it is better. Maybe it takes hills easier, will last longer and actually turn out to be the better bike.

And, maybe I’ll like this bike better, but for now I still have the training wheels on.

Follow this journey on Twenty Something and Sick.

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Diabetic Supplies Should Not Be Considered a ‘Luxury’ Item

I am a type 1 diabetic who deals with constant changes in my blood glucose levels due to lack of insulin and proper supplies because of the cost. My insurance is through BCBS, which, might I add I pay a pretty penny each month and I have been struggling for the past year trying to get my supplies and medications to be covered.

I have finally received my Dexcom G5 CMG after almost seven months of back and forth with my insurance and diabetes management and supplies. Now my Dexcom is covered at 100 percent; it’s supplies along with any pump supplies I will need. But on the other hand, I’m told insulin and insulin pumps aren’t covered because they are not a medically necessary item. It’s a shame that insurance companies look at things like insulin, which keeps me alive, as luxury items.

diabetes supplies

None of my supplies are covered 100 percent by insurance except my glucose meter but its supplies cost me over $50 a month. And then my insulin alone costs me $35 each time I need to get a refill. My needles cost me $20 just so I can give my insulin injections. We shouldn’t have to pay so much for the items we need to live. My pancreas doesn’t exist in the proper way it should. So insulin is my only way to stay alive.

Insurance companies make a decent amount of money off those who are insured through them, yet they are not willing to pay to keep their insured alive and well. What kind of world do we live in?

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The Letter I Sent to the Canadian Government to End the Stigma Around Arthritis

I recently sent out a bunch of letters to every premier in my country Canada – including Health Canada and Justin Trudeau himself. Responses are trickling in, unfortunately not directly from Trudeau himself. I hope some good can come of my persistence.

When was the last time you were in pain? Did the pain go away? Was it fixed with treatment, rest or medication? Did the pain get in your way of working? Daily living? Stop you from activities and hobbies you once loved? Your parenting? Your love life? Have you been promised that pain will never go away? Does the pain cost you thousands of dollars to treat? Was it accompanied with crushing fatigue? Was this pain and fatigue caused by an autoimmune disease attacking healthy cells in your body, affecting organs such as your lungs, heart and brain? Does the disease come with complications that often lead to severe illnesses, conditions, surgeries, an opioid dependency, permanent disability or in some cases acts as a silent killer?

Do you know what 4.6 million Canadians are struggling with and what is the number one cause of disability in Canada, affecting one in five working age adults? Do you know there is a stigma behind the disease that puts off diagnoses, treatments, awareness funding and leaves the those struggling with the monstrous condition in the dark?

My name is Eileen Davidson. I am a 31 year old single mother from Burnaby, British Columbia. I am one of those Canadians that have been promised that life of pain and fatigue. My 4-year-old son, Jacob, has just entered kindergarten. I am taking the opportunity of having a little more time on my hands to send these letters out. For the past two and a half years I have been a stay at home, single mother after saying goodbye to my nine year long beloved career as an esthetician – but not by choice. This chronic and incurable disease placed me on that disability list at the young and usually able age of 29.

Two responses to her letter.

I have a disease which is well known, but commonly misunderstood placing an overbearing stigma which can lead to difficulty for the many living with this atrocious debility, including myself. I live with an invisible illness where when looking at me, I look like a young and vibrant mother. But, underneath those looks that can be deceiving, I live with an incurable and disabling illness.

My villain is arthritis. Autoimmune seropositive rheumatoid arthritis and degenerative osteoarthritis to be exact. Chances are you’ve heard of any of these, you may know someone with a form of arthritis or you yourself may have one of the over 100 types including lupus, fibromyalgia, gout, rheumatoid arthritis and osteoarthritis. It wasn’t until I was diagnosed did I know that someone my age could get a form of arthritis, as is common among many.

As a mother and someone with this monstrous disease, my heart sank when I found out children as young as an infant can be diagnosed – every three in 1,000 children in Canada. I can’t stand the thought of my child or any child experiencing a lifetime of the pain, fatigue and side effects from living with this chronic debilitating illness. Arthritis isn’t just my own personal villain. My late grandmother and aunt both severely struggled from this atrocious disease. What I do is also in memory of them. I did not understand their struggles until I too was diagnosed.

A response to her letter.

In my time living with arthritis I have been left with more questions than answers. How do you expose a stigma and change the mind of people who haven’t been introduced to the hell of arthritis? To understand that the disease is much more than just achy joints in the elderly? How do we get better treatment and support for those struggling with the disease? How come I have such a major and common disease but never see anything for it? I’ve been left with so many questions I decided to become an ambassador with The Arthritis Society and blogger. I live with the purpose to raise awareness and help for a better future for the lives of those struggling in silence from the caustic impact illness has on one’s life.

I am asking for help after noticing what the charity and myself as a patient is lacking. With so many other charities out there, how do we get anyone to pick The Arthritis Society for its time in the spotlight? Why is The Arthritis Society, the largest charity for arthritis in Canada, not government funded when arthritis is the leading cause of disability in this country?

I come to you as someone with two forms of this disease. Someone who had my life disrupted, placed on disability, promised a life of pain and fatigue, a real authentic story of the impact this disease has on someone’s life and a family. I am asking you to help me make arthritis have the moment it needs for so many people across Canada, North America and the globe. Please help me banish the stigma that is debilitating arthritis and improve treatments, support, research and advocacy.

Thank you and sincerely,
Eileen Davidson

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Women With Ostomies Try Lingerie Designed for Ostomy Bags

If you live with an ostomy, you’re likely familiar with adjusting your wardrobe to be ostomy-friendly. While there are many ways you can adapt mainstream brands to suit your ostomy, few brands offer clothes made specifically for people with ostomies.

To give women with ostomies more options, Jasmine Stacey, a 25-year-old designer living with Crohn’s disease, created the Jasmine Stacey Collection, a line of lingerie for women like herself.

“My goal was to make women who were in the same position as myself feel confident again,” Stacey told The Mighty. “All the products we use are so medical, so to make something that is personal, made with beautiful fabrics that are specifically chosen and designed for ladies with ostomies, I hope adds a bit of comfort as well as spice.”

To see how functional Stacey’s line is, The Mighty asked three women living with ostomies to try different pieces of lingerie. Here’s what they thought.

Gaylynn Henderson

Founder of Gutless and Glamorous, lives with Crohn’s disease

A black woman wearing lingerie and a hat.

Gaylynn is wearing the Ravine bodysuit in a U.K. size 8 (the smallest size available).

Fit: It wasn’t a good fit for me. Even after the double straps were adjusted, the item gaped in the back.

What she liked: [It’s] stylish. This item could be worn as both lingerie and/or styled as outerwear. [I] love the idea behind the product and the brand.

What could use improvement: There is a mesh insert that is designed to be flesh-toned and should be neutral against the skin to create a more alluring look. As is, this is not the case for people of color. This item will not have the same alluring effect on people of color.

Her rating:  Three stars

Jessica Grossman

Founder of Uncover Ostomy, lives with Crohn’s disease

White woman wearing two piece lingerie in black.

Jessica is wearing the Black Widow Wrap bra and brief in a U.K. size 8.

Fit: I didn’t really understand what this was supposed to offer people with ostomies. It didn’t cover my ostomy bag, and I didn’t really feel like it offered much support. When it comes to keeping my ostomy bag “safe,” I prefer to wear boy type shorts to keep my bag covered from top to bottom under my pants. I wasn’t sure if this was supposed to be an alternative to that?

To each their own. If someone else thinks that this offers them support and gives them the confidence that they need to get intimate with another person, then they should go for it.

What she liked: [It] seemed to be good quality.

Her thoughts: I prefer to wear clothes meant for “normal” people, including lingerie, as I don’t have any problems with “normal” people clothing and don’t feel the need to purchase ostomy-only products. I am confident in who [I am] and the differences with my body, so I don’t feel like I need something tailored to the ostomy when I can just as easily buy lingerie like anyone else can. In fact, I prefer that and prefer to shop as any other person.

Her rating:  Three stars

Jearlean Taylor

Founder of Osto Beauties, cancer survivor 

Jearlean is wearing a black suspender belt and bra in a U.K size 12.

Fit: The fit was really awesome. I was surprised it fit me perfectly. It is very fashionable. The style had some lace but still gave good coverage. It’s a two-piece lingerie set, but I still felt very comfortable trying it on.

What she liked: I really liked everything about it. I love the color and the coverage helps hide my colostomy bags. Yes!

What could use improvement: Maybe bring the waist up just a little more.

Her rating:  five stars

Those interested can shop the Jasmine Stacey Collection here.

All lingerie was provided to The Mighty by the Jasmine Stacey Collection free of charge. 

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Female Veterans With PTSD, Where Are You?

Editor’s Note: If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact the National Sexual Assault Telephone Hotline at 1-800-656-4673.

I have searched my local and regional Veteran Affairs offices for other female veterans who are in my age demographic, the ones who fought in “the war on terror.” I have talked about various things with a few older women and have been met with sympathy or interest, but they can’t really understand the ways of “the sandbox.”

The contributor with her fellow soldiers

Submitted by Julia

I love shooting a few words with the more mature generations. They look at me like I’m in a different world, which is true. So much is the same and so much is different. My insecurities tell me the ones who don’t say anything think I am a wife of a veteran. I’m used to that, even with my ex-husband. It’s too bad that I hate baseball caps because they all wear them proudly.

It is hard to write or speak about this because it means admitting I’m vulnerable. I was taught that vulnerability is a weakness. It is not though, and I am finding that sometimes I feel better after I share. The shame eventually chips away to reveal strength and perseverance.

I was raped while I was in Iraq by my platoon sergeant. I’m not going to say anything to justify it, because it happened. I have lived on the defensive for too long and I should not have to. There are other things like being shot at, mortar explosions, friends you barbecued with one night who were then gone the next, or the worst, driving past what was left of children. Those are the easier things to talk about because people accept them. There were two serial rapists on my post, four that we knew of in Kuwait with different “MO’s.” They were us, whether they were civilian contractors or in any branch of the military, foreign and domestic.

How am I supposed to talk about this to a group of guys? Any of them could be one of them, or know one of them. It is a polarizing topic in the spirals of my thoughts. It is isolating. I’m reaching out here for other sisters, regardless if you were in the military. I know you’re out there. I understand you may say nothing. I did not for a very long time. We each have our own journey. If anything I want you to know that you are not alone. I’m here and I’m listening in the quiet.

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

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Getty image via Jupiterimages

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I’m Bringing in the New Year Sick, but That’s OK

Some people wish others health and happiness for the New Year. I have had to learn how to achieve happiness without the guarantee of health. If I want to enjoy my life and take advantage of still being here on this beautiful planet full of love, potential and opportunity, I need to be able to see happiness, feel joy – regardless of the things I can’t control.

On December 30th, after my boyfriend asked me to please go to a clinic and just see if I have pneumonia again, I agreed to go. For him. I wasn’t sure if it was pneumonia or not so I had been hesitating. Thinking it might be a viral chest cold.

It turned out to be pneumonia. Again. So, we brought in the New Year while sitting inside our warm home. Wrapped in blankets, in our pajamas – me on antibiotics, inhalers, prednisone, Tylenol, coffee… the whole pneumonia shebang. Bringing in the new year with a bang. And we had a lovely night. Warm. Safe. Full of love. Taking care of my health. Being together. Counting down, watching the ball drop. Laughing, holding hands and a kiss at midnight.

blanket covered with pill bottles and text saying 'happy new year!'

My year isn’t “ruined” because it started off with pneumonia. It’s one week that happened to land right when one year ends and another begins. One of many days I will be sick with something. It’s part of what my body does. And I refuse to let that ruin my life or let my mind interpret it as being a lousy omen for the year.

Nope. It’s not an omen. It’s just part of my life. And I’m glad to be alive. I’m glad to be loved. I’m glad to know I will have new days full of new moments. Good ones, great ones, funny ones, hard ones, sad ones, sick ones. It’s part of the human experience.

I hope, if you also started out the year on a hard note, health-wise, that you can try to fight the easy-to-happen negative feelings. The fears about this being a portent for the future days to come.

We can’t control everything our bodies throw at us, but we can control how we respond to it. How we approach the day after. How we bring in the year. Each day is a new start.

Each rough section is hard. Sometimes it can be so hard. I’m not denying that. I’m not living in a fantasy land. Sometimes we can wind up drowning in pain, sickness and despair. Sometimes it can last for far too long. Sometimes it is an illness that will never end. And that can be hard to take.

But please know that others understand. That others care. Please try to see the potential underneath the pain. I’m here for you on the days when it’s hard to see the promise of future joy. I feel blessed to know that many of you will be there for me on the days I struggle to see any hope of returning happiness. Together we can bring joy and love to each other on the days we need it most. And that’s a truly beautiful thing. That’s what I love about life.

Happy New Year, my chronic illness friends. I wish you all happiness and joy; I wish you others who will hold you up on the days when joy is darkened. I wish you love.

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How I Celebrate New Year’s as Someone With Scleroderma

As 2017 comes to a close I sit at my computer reflecting on my year and try to look forward to a brand new year and all it has to offer. Any “normal” 35-year-old adult would be excited to “party out the old year” and kick off a new year in style by going out on the town with their significant other or a bunch of their close friends. They would be buying a new outfit and making plans to “live up the rest of 2017!”

Sometimes, if I am really honest with myself, I do envy the people who are able to go all out for New Year’s Eve and spend a fortune on lavish outfits and expensive bottles of wine and go out for fancy dinners, eating filet mignon and lobster tails. I miss that time in my life when everything was so simple and the only problems I had were what dress to wear out for the night and which of my friends to hang out with for the evening.

The last time I went out for a New Year’s Eve celebration was when I was 20 years old. At that time in my life I was already diagnosed with scleroderma (a rare chronic illness that affects the skin, blood vessels, circulation and major organs like the heart, lungs, kidneys and liver, causing them to harden and thicken) for about a year, maybe two years. I was really denying my disease at that point in my life and so I continued on as if I was perfectly normal and I brushed aside all of the pain and discomfort I was feeling and chalked it up to feeling “under the weather.”

I had made plans to go out with a few of my close friends to a local bar and celebrate with a few drinks and some dancing. Sounds pretty normal, right? Well by the end my evening was anything but normal. I ended up getting sick in the bathroom after only a half a sip of my cocktail and feeling so dizzy I could barely stand, let alone try any sort of dance moves of any kind. I ended up leaving an hour after I got there by myself and having to pull over three times on my way home to vomit out my driver’s side door on the side of the road. I couldn’t understand why I was feeling like this or what was wrong with me that I couldn’t even enjoy a evening out with my friends. In my mind I was still thinking I just had the flu or something and the reality was that I was having a flare-up and serious symptoms brought on by scleroderma.

the author with a girl wearing a purple mask

It took me several more years to finally accept I was not a healthy, “normal” person and I really couldn’t do all of the things I once enjoyed doing. Realizing that and eventually having to give up some of the things I loved to do was extremely heartbreaking and difficult for me to accept as a 20-something-year-old.

I am now a 35-year-old woman living with scleroderma and every aspect of my life has drastically changed since that New Year’s Eve 15 years ago. Going out to bars and hitting the clubs isn’t really an option for me anymore. I am so tired the majority of the time that I would never be able to stay up until 11 to go out to a bar or nightclub and drink and dance until 4 or 5 in the morning! That just isn’t possible anymore. Running around downtown in a sleeveless dress without a coat on, walking block after block to hit up every bar on the strip definitely is not something I can ever do again! For starters, it’s way too cold to be walking around wearing nothing but a cocktail dress and high heels. Secondly, I can barely walk up the stairs in my house and there are only eight, so trying to walk a few blocks in the middle of winter outside is impossible!

Learning to accept my disease and my limitations also forced me to accept that I have to live a lot differently than I was before my diagnosis. Having scleroderma meant I could no longer walk around outside without a coat, a warm hat, boots, a scarf and mittens in the winter. I needed to keep my body healthy and strong and that required changing my life habits along with my expectations for myself and my life. Trying to accomplish those changes was a lot easier said than done.

I wanted to still be able to have the same experiences and fun I had always had but I couldn’t because my body had other plans. I wanted to be able to enjoy going to outdoor concerts and walking the mall. I wanted to still have my life on my terms and as time passed I quickly realized that my disease was not going to simply fall in line and allow me to go on as if nothing had happened! Scleroderma was here to stay and it was definitely making its presence known!

New Year’s Eve looks very different now for me. I spend the night at home in my warm fuzzy pajamas watching scary movies and eating veggies and dip and cheese and crackers, drinking caffeine-free soda covered up with a warm blanket and slippers. Funny how different my life is now than it was before I got sick.

two women wearing gold and silver masks

I think a part of me will always miss the days when I could go out and dance all night long and celebrate with my friends and come home in the wee hours of the morning exhausted and laughing, but that chapter of my life is long gone. I know my limits and I would much rather spend a quiet evening at home watching movies with my bestie than risk going out and maybe getting a cold that could turn fatal in the blink of an eye or slip and fall on some black ice and possibly break a leg or an arm. My priorities have 100 percent changed and although some may look at me and say I am boring or I am too cautious and play it safe, I would completely agree. I can’t afford to throw caution to the wind anymore. My life depends on me making healthy decisions for my body.

Yes! There are a ton of things I just cannot do physically anymore, and yes! My life has been changed forever and my disease may seem like it runs my life! In a way it does run a portion life, but only to a certain extent. I am myself and I am still the fun-loving, silly, sarcastic person I have always been. That part of me has not changed but I do have to consider the fact that I have a rare, chronic, terminal illness when making decisions that can affect my health and my body.

Now I realize a lot of people may not necessarily understand why or agree with my choices and might think I am being a “baby” or that I am “a party pooper,” and that’s OK – everyone is entitled to their own opinions in life. If you have not been around someone living with a chronic illness on a daily basis, you cannot possibly begin to understand the struggle that is my life and the issues I have to take into consideration just to get through my day, and that is OK too.

No, I may not get to ring in the new year at a wild party or out on the town with my other friends, and no, I might not get to enjoy everything I want to do in life. However, I am alive and I am doing everything in my power to keep my body healthy, and that is something I can celebrate for myself and be proud of. It’s not easy and there definitely are regrets for me and things I miss out on, but I think everyone has things they wish they could change in their lives. The reality is none of us can go back and fix our mistakes or fulfill the parts of our lives we missed out on in the past. The only thing we can do is live in the “now!” and not take what we have or the people who love us for granted!

two women standing in front of christmas trees

So my New Year’s Eve celebration might not be the most amazing way to say goodbye to 2017, but for me it is a way to appreciate making it through another year living and as healthy as I can be. For me it’s a way to toss out the old year and all the ups and downs that came that year living with scleroderma, and quietly bring in a brand new year with a fresh outlook on my life and my illness and a positive attitude, so I can prepare to fight my way through another 365 days living with scleroderma!

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