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Why I'm 'Happy to Be Here' – Regardless of My Health

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“Hey! How are you?” is a casual greeting that I hear many times a day.

“Seriously, how are you doing?” is a more pointed question asked by those who know that I’m sick and want to show that they care.

I will be honest about my health with those nearest and dearest to me, but I choose to answer the casual, “How are you?” question with, “I’m happy to be here!” for many reasons.

How I am doing is very, very complicated. I endure a variety of medical treatments for my relapsing polychondritis and other illnesses. Sometimes I’m ill from my disease. Other times I’m ill from medication side-effects. Usually I’m upbeat about this, but not always. Often I just prefer not to talk about it and enjoy casual conversations like a normal person would.

Those asking how I’m doing might not be prepared for real answers and won’t know how to respond. If I told the truth about how I was doing at all times, I would be greeted with silence or pity. Either way, I would bring all casual conversations to a screeching halt. I avoid the social awkwardness and give my easy,”Happy to be here!”

Honestly, I am happy to be here. I’m happy to be alive, because I know well that life is a gift. The fact that I’m still alive and anywhere at all is a miracle to me and I don’t take a minute this life for granted. If I’m dressed and in public, able to have a conversation, I worked hard to get there. I may have spent days and days at home, turning down other outings and saving energy for this specific time. I possibly spread out the preparations over several days so I wouldn’t be completely worn out by the time I arrived. If I’m there, I promise that it is by design and not accident.

If you ask me, “How are you?” expect my, “Happy to be here!” answer.  Please know that I’m happy you asked, happy to answer, and truly happy to be here!

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How It Honestly Feels to Receive Yet Another Diagnosis

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I have relapsing polychondritis, an autoimmune disease that destroys the cartilage in my body. The rule with autoimmune diseases, like the rule when seeing deer along the side of the road, is: “When there’s one, look out for more.”

I was recently blindsided by a new, third diagnosis. I try to be a grown-up and take things as they come. “No big deal!” I tell myself.

The reality is that it’s a bigger deal than I first acknowledged to myself. I’m sad. I’m angry. I don’t want another diagnosis. I don’t want more pain, more drugs, more side effects. I wish I had a choice. I get tired of smiling. I get tired of being the one to make others feel better about my health. I get tired of apologizing to my husband who is amazing and doesn’t deserve to deal with all of this. In short, I get tired.

I’ve been in this mental space a time or two before and have a name for it: grief. I’m mourning the loss of who I was yesterday, the loss of the already limited future I thought I had. I have already accepted my limitations and the side effects of the medications I already take, but I’ve lost that too.

I will make whatever decisions are necessary to manage my pain and deal with medication side effects. I will learn to accept this, and that acceptance will come soon.

Until then though, I’m being nice to myself and giving myself the time and space I need to get there.

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Thinkstock photo via a-wrangler.

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Why I Use 'Silly' Terms to Communicate My Serious Pain

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I have learned many new things since my diagnosis four years ago. I now know relapsing polychondritis is an autoimmune disease which causes my body to attack all of my cartilage — and cartilage is everywhere. I never thought I’d know that, but I now know about inflammation, infusions, immunosuppressants and so much more.

I learned about costochondritis, inflammation in the cartilage of my ribs. This pain comes out of nowhere and on a pain scale of 1-10, it rates about 9,000. When it hits, I can’t breathe or move. The pain has knocked me off my feet at times. This isn’t much fun for me, but it also isn’t fun for my husband to watch when I suddenly fall to the ground and writhe in agony. As my husband and I are adjusting to this new life, I try to give my him a clue about how I’m doing on any given day with a simple “I just feel icky today but I’ll be OK,” or “Today is not good and I’m still deciding if medical intervention is necessary,” or “Take me to the hospital now!”

When I can’t breathe, however, it’s hard to give him a status update. After one costochondritis event, I described the pain as, “It’s like a ninja* snuck up on me and stabbed me in the ribs!” This became our term for my rib pain.

“Ninja pain.”

When I’m trying to breathe despite the pain, my husband will ask “ninjas?” and I’ll nod. Then he knows that there’s nothing he can do for me but wait for the worst to pass. When I can breathe again, I’ll gasp, “Stupid ninjas!” and we’ll smile a bit. If we’re in public when this happens, I’m sure overhearing a conversation that is limited to “ninjas?” a nod, and then laughter is confusing for bystanders, but it works for us.

Relapsing polychondritis has taken away the thought of pain-free days. Some days are pretty good, but when my disease is acting up and making a nuisance of itself, I may start the day with debilitating pain in my hip. An hour later, my hip will still be sore but the sharp pains will have moved to an elbow, a wrist, my big toe, or any other joint in my body. When the pain just bounces around my body, I call that “pinball pain.” It’s another shorthand term for the benefit of those around me, letting them know I hurt and not to expect much from me. “Pinball pain” days cause me to re-evaluate my to-do list. I cancel everything that doesn’t really need to be accomplished that day and go to bed early. I’m one of the lucky ones; these pains usually go away after 18-36 hours for me. Many of my friends in the relapsing polychondritis community aren’t so lucky.

So why do I use silly terms for a serious disease? I use them because I can. There are so many things about relapsing polychondritis beyond my control: the disease, the medications, the side-effects and the whole “BAM! Some new symptom appeared and your whole life is about to change yet again” thing.

I will always look for the laugh in my situation. Always.

It makes me feel like I have just a little control over a disease that is dominating my life.

*I’m sure real-life ninjas are rather nice people and that we’d be good friends. It’s these imaginary ninjas that I despise.

Follow this journey on Relapsing Polychondritis

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Focusing on What I Can Do With a Relapsing Polychondritis Diagnosis

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Author standing in front of the arch of a canyon on a hike I was adopted at birth. It has never been a secret and it has never been a problem in my life. You may have, at least once, looked at your family and thought, “How on Earth can I be related to these people?” I’m not.  Score! There is one less than perfect aspect, though: I do not look much like my family.

My mother and sister have very elegant hands with long, thin fingers and beautiful nails. My hands? Not so much.

All of the members of my adopted family have olive skin that tans beautifully. My skin? I am so white I am see-through.

All of the members of my adopted family have lovely, thick, wavy hair. My hair? Baby-fine and stick straight.

I have, at times, hated my hands and my skin and my hair, but recently I am experiencing a different form of body-hate: my body hates me.

On October 9, 2012, I was diagnosed with relapsing polychondritis. Don’t worry, it’s not contagious. Relapsing polychondritis is an auto-immune disorder. There is no known cause and there is no cure.

My immune system is attacking and destroying the cartilage in my body.  The first cartilage destroyed was in my left ear. I woke up one day with a cauliflower ear. My ear now resembles one of a wrestler, boxer, or rugby player. Bizarre, yes, but it was not really a huge deal. I keep it covered with my long hair.  It can actually be a source of some amusement. I tried to convince some of my children’s friends that I was injured engaging in a mixed-martial arts event or perhaps a backyard cage match. They almost fell for it.

My next symptom was pain in my joints — my hands, elbows, jaws, knees, feet, and hips. The pain came on gradually so I did not notice it at first. Trust me, I notice it now. I am 43 years old but feel 83. Often I feel even older than that.

This insidious disease next struck my right ear and my nose. I have experienced painful cartilage deterioration in both places. Fortunately the damage is not yet visible to the casual observer. I can cover an ear with my hair — even both ears — but my nose? My hair won’t cover that. I am reminded of a Rita Rudner joke: “I was going to have cosmetic surgery until I noticed that the doctor’s office was full of portraits by Picasso. My nose may not be perfect, but at least it’s centered.” I have never loved my nose, but I am very grateful to still have it!

And now for the really bizarre parts: This disease can attack my trachea. If it becomes severely damaged, I may need a tracheotomy where I would forever breathe through a hole in my neck. I may lose my voice as well. This disease can attack my heart. If it becomes severely damaged, I may need stents to support my weakened arteries. A few days ago I began to have trouble swallowing liquids and may need to have my esophagus stretched. I am not making this up — they actually can stretch an esophagus. I am experiencing pressure inside my ears and have already lost a significant amount of hearing. My eyes are currently unaffected, but they are at risk.

This disease is truly a little slice of heaven.

I will live on medication for the rest of my life. Pain medication. Anti-inflammatories. Immunosuppressants. Steroids. The list will get longer.

I have told some friends and a few family members. I am not telling the people I work with because I want to continue to work as long as I am able. If they know I am sick, I may not get the contracts I rely on. So why am I blogging about this? I need a space to process all that is happening to me.

Since my diagnosis, I am rotating between shock, horror and depression while trying to ignore the all-consuming fear. Every new symptom causes me to loathe this disease even more. But I am a planner and I am a do-er. So what are my plans? What can I do?

I can fight this every step of the way.

I can be grateful for every good day and every small blessing.

I can love my body even while it hates me.

I can stay out of the sun, eat right, exercise, get enough rest and manage my stress.

I plan to be healthier in one year than I am today.

In short: I plan to make relapsing polychondritis look sexy.

One of my favorite books is “Rita Hayworth and the Shawshank Redemption” by Stephen King. The last line of the book is fitting: “I hope.”

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When a Boy Told Me, 'You Aren't Handicapped, You're a Junkie'

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Today I woke up knowing it was going to be a rough day. My pain was somewhere between a grimace and the crying face on the pain scale. I don’t even use numbers anymore; my face tells the story.

Tamara Macnaughton

But I had a meeting today, so I woke up, showered then lied down for 10 minutes. I got up again, put on half of my makeup and lied back down for 10 minutes again. Then I got back up, did the other half of my makeup and rested for another ten minutes. I got up again, got dressed and rested for 10 minutes one last time. Finally, in my last brazen attempt to make it out the door before I gave up all hope, I packed my lunch, gathered my purse and got into my car.

But I had to pick up my prescription before going to work first. I decided to pull into the disabled parking space because walking from my car into the store was going to be a challenge — making it all the way back to the pharmacy and the impending line was going to be an even larger one.

I don’t always park in a disabled parking spot. Actually, I rarely do. But yes, on bad days I use it. I slowly walked through the store with the frailness of someone three times my age. I stood in line with my legs fighting against me. They were practically screaming, “Sit down, right here!” “Not on the floor,” I argued against them. I just needed to make it back to my car. I got my prescription and said I didn’t need a bag, knowing I would be taking a pill immediately.

As I slowly teetered my way back to my car, fighting a war against my own body to put one foot in front of the other, I opened the pill bottle, grabbed my water from my purse and took one quickly. The next 15 minutes while I waited for relief was going to be a challenge.

As I walked towards my car, two young boys behind me were talking about drug addicts. The conversation caught my attention because I work in the substance abuse field. Behavioral health is my passion. But as I listened closer, this wasn’t just any conversation. They were talking about someone. Clearly, they couldn’t be talking about me. Or were they? As I opened my car door, it became apparent they were talking about me. Loudly. For anyone within earshot to hear. And before I had time to close my door, one of them yelled, “You aren’t handicapped, you’re a junkie.” I sat there for a few minutes. I was on the verge of tears, wondering how it was possible someone could lack even the most basic amount of compassion.

This morning, I fought against pain those young boys have likely never experienced, let alone suffer from chronically. I realized it took me nearly an hour longer than normal to get ready today because I simply couldn’t keep going without a break. 40 minutes were wasted because I needed to lie down. 40 minutes! And they had the audacity to place judgment over me for a five-minute snapshot of my life that they witnessed.

As I was sitting on my desk later, my feelings rotated between anger, sadness and embarrassment. I wish I would have said something. I wish I would have been able to construct a sentence that would provided them even the most basic amount of insight on what I was feeling.

I wish I could have told them about optic neuritis and neuropathy. I wish I could have shown them the lesions on my brain. I wish I could have shared the story of waking up blind only to hear the words, “You have multiple sclerosis.” I wish I could have told them about what it feels like never knowing which body you’re going to wake up to next morning. I wish I would have told them what it’s like to spend your life being poked and prodded and being emotionally, mentally and physically exhausted as you fight against your own immune system.

But I couldn’t. I didn’t. I wasn’t ready to hear that. I didn’t need to hear the uneducated, uncompassionate banter of those young men because today I’m already out of spoons.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Pain From Endometriosis Was Brushed Off for 12 Years

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Pain: one of my least favorite words. It reminds me of the struggles I have faced for over a decade. I was 9 years old when I started my period. It didn’t seem like a big deal at the time. In fact, my mom was over zealous with welcoming me into “womanhood.” It wasn’t until a few months later that the pain began. A few days before my cycle I would get very nauseous,the color in my face would fade to gray and I experienced horrible cramps. They were so excruciating that during my period I missed three to four days of school per month. My heating pad became my best friend. When I told my mom how bad the pain was she said, “Oh honey, I understand.” I was bedridden for days out of the month, too. I accepted this as normal thing because my mom did, too.

I never sought medical treatment because my pain ended when my period did. It wasn’t until I was 22 that the pain started and never stopped. It was located on my lower right side. It was sharp, twisting, gnawing and commanded attention. I went to the gynecologist searching for answers. She did an ultrasound and said that nothing was gynecologically wrong. She thought that it could be my appendix rupturing. I was ordered to go to the hospital for an outpatient CAT scan. The technician informed me that they would be using an IV contrast. I never had a contrast before, but I ignorantly obliged. She injected it into my vein and scurried into the booth. Seconds after being injected and put into the tube I started to gasp for air. I wasn’t visible to the tech and I was terrified. I couldn’t speak and started to lose consciousness. The only thing I knew to do was bang my arms against the machine, praying that help would arrive. I remember “blacking out.” Long story short I went into anaphylaxis. I was revived after one minute, but want to know what? No appendicitis. No answers, no nothing. I was a “healthy” 22-year-old girl.

I went on to see over eight different doctors until I finally said enough is enough. The diagnosis came after me pleading with my new gynecologist for months on end to perform a laparoscopy to see why I was having pelvic pain. After months of personal research, I was positive I had endometriosis. My gynecologist was very adamant about it. She bluntly stated, “You’re too young to have endometriosis.”  Endometriosis is a gynecological condition in which tissue similar to the lining of the uterus implants lesions on the outside of the uterus. This can cause pain similar to appendicitis, bowel problems such as constipation and or diarrhea, infertility, scar tissue and many other symptoms.

I was crushed because I knew I needed to figure out what was going on with me before things got even worse. I was barely able to eat and function in daily life. I took birth control pills for months to appease her. With no relief from the medication, my doctor scheduled me for the surgery. I was so nervous that I wouldn’t have anything wrong with me. Maybe she was right and I just had a low tolerance for pain? After a few hours in the operating room, I woke up foggy and anxious, waiting to hear the results. I was diagnosed with stage 4 endometriosis. I started to cry tears of happiness. After all the years of being brushed off by doctors, I felt so validated for the first time!

Being diagnosed meant I wasn’t imagining it and I had the chance to get better.

I was diagnosed 12 years after my initial symptoms. With endometriosis, on average it takes 10 years to figure out what’s going on because of a lack of knowledge in the medical community and the symptoms can be so similar to gastrointestinal issues. Only surgery can officially diagnose it.

Being diagnosed at 22 was tough. At that age, you’re supposed to be going out with your friends, having intimacy with your partner, going to school and working towards a career. For me it all came to a screeching halt. My plans to go to nursing school had vanished. I wasn’t able to attend due to the severe pain. Sex became so unbearable that I would bleed and cry and even end up in the emergency room.

woman with dark hair standing next to man wearing hooded jacket
Jacquie and her husband.

People innocently ask, “So, are you still sick?” or “When are you going to get a job?” These are all very honest questions, but the truth is, I truly don’t know. I have accepted that I may never be back to my “old self.” Instead, I have become a newer version of myself. I may not be able to attend events all the time, but I’m wise enough to know it is not my fault. I know my limits and take care of myself. Being chronically ill has given me the ability to appreciate my good days.

Support is one of the best things you can have, especially when you’re sick. My husband is my biggest advocate. He never let me give up without finding a diagnosis. I feel so lucky to have him in my life. Having an amazing team of doctors helps as well. I’ve had seven surgeries in the last three years and I’m slowly starting to feel as best as I can given my circumstance. Many women have multiple failed surgeries.

Since my last surgery, my life has improved. I currently go to pelvic floor physical therapy to help relax my tight muscles, see my specialist every few weeks to follow up and go to the chiropractor to help with my pain. There is no cure for endometriosis, but I take each day at a time and know that I am not alone.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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