Going Through a 'Break-Up' Every Time New Medication Doesn't Work

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Tonight I lie in bed feeling betrayed for the fourth time in the past two years. I am not necessarily great at relationships, but I am even worse at break-ups. Yet here I am again…lying awake in bed, replaying our whole relationship in my mind. What happened? Things were going so well. Was it me? Could I have done something different to make sure this last one was “The One?” We were getting along so well at first. I was beginning to feel strong and secure about myself again. Yet here we are…again. The fourth medication with which I have been forced to break up in the last two years.

You see, when you have rheumatoid arthritis, you are forced to get into these very committed relationships with some of the meds out there. And when they fail to work, it is as if you were breaking up with who you hoped would be “The One” – that evasive remission drug that could change your entire life and make you really “live” again. But sometimes finding it is harder than finding your soulmate. As if it were a game of matchmaking, doctors parade this list of “suitors” in front of you, admitting that it’s a hit-or-miss game. Your choices are not limitless, as doctors are very clear that there’s only a few available for your condition. Just as in real life, you cringe as you hear some of the warnings that each of them carry, and secretly wonder if it’s maybe best to just stay single instead. But your 15 minutes with the doctor are almost up, so you need to make a quick decision before he/she leaves. Hopeful that this next one will work, you choose the one that seems to have “the most potential.”

I have been on this revolving door of medications four times now. The last two were not that sad to break up with, as the good times did not outweigh the bad times. I was looking forward to moving onto the next one. But this last dalliance and subsequent break-up was extremely rough.

First of all, the break-up was not mutual. Not this one. I fiercely tried to hang on to it. For the first time in years, I was feeling better. It was working. Pain was manageable. Fatigue was minimal. It was working. I was so attached to the possibilities that I chose to ignore the warning signs. So what if I had frequent nausea and vomiting? That’s a small price to pay for being able to take the dogs out for a walk. I found myself making many excuses to cover its flaws. Yes, the stomach pain and acid reflux can be debilitating at times, but if I could just concentrate on the fact that I worked eight hours and cooked that night, those were normal relationship problems. Besides, no relationship is perfect. I even repeated these excuses to my rheumatologist, who without hesitation said, “No more. Those can lead to even more harmful conditions. It can rupture your intestines. It is done.” My heart sank. He didn’t allow any room for bargaining. No excuses were good enough, and just like that…it was over.

And so, here we are again – at the cusp of another emerging relationship that I wasn’t ready to take on. Although, if I am being completely honest, just like in real life, it is getting harder and harder to stay positive and not judge this one based on the flaws of the last one. I am suddenly very aware that with every break-up, my possibilities of finding “The One” – that allusive remission drug – decrease. After all, I am painfully aware that when it comes to specialty medications, there are not plenty of fish in the sea left for me to pick from.

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Thinkstock photo via grinvalds.

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5 Things My Loved Ones Should Know About Life With Rheumatoid Arthritis

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There are so many things I do not know how to express or explain to the people who love me. The next five bullet points are some of the most important to me.

1. I never wanted to become sick.

I pray every day that God will see fit to heal me. At this point in my illness I do not even fully understand what is going on in my body most days. I just made a list of symptoms to show my doctor which was about 20 bullet points. I am hoping they will connect them to form a more solid diagnosis. I am hoping they have answers, that there is something to be found that is fixable. I have rheumatoid arthritis and have ignored it for many years. Not facing it has only made my symptoms worse. It can take six months sometimes for my body to recover from a flare, surgery, injury or infection.

2. Please be considerate and know I am trying my best.

I am actively involved in a couple different ministries and charities and I love the opportunity to serve. However, if I am there, know it is taking all my energy to get by. Please do not judge me for not being extra social or participating in every event. Please do not exclude me from group activities. I tend to leave as soon as the event is over and I sometimes get left out of group pictures and after event lunches or activities. It can be a painful reminder that I am disappearing from the lives of my friends.

3. There are weeks when I do not leave the house for days.

Texting and social media are very much a lifeline for me right now. Getting up and out of the house is taking an increasing amount of energy. So, I connect with friends via my phone. Sometimes I just need to text and share that I am having a bad day. Even if I do not receive a response, just being able to share it lightens the burden. The friends I do have in my life are very important to me. So, if one of them needs me, even if I cannot make it out, I am always available by phone or text.

4. I have a “knee-jerk” reaction to apologize.

I am always saying I am sorry. I apologize for apologizing too much. I have been trying to shift my behavior to saying thank you instead. Thank you for understanding, thank you for your help, thank you for including me and so on and so forth. Apologizing for my illness only makes me a victim to it, versus having gratitude for what I can do.

5. I do not want to hear how high your pain tolerance is.

That is a phrase I really do not like to hear. It is dismissive, ignorant and comes with an air of superiority. People with chronic pain probably have a high pain tolerance but the pain never goes away! It would wear down the toughest of the tough if there was no end in sight. I am really glad that your pain tolerance is high; that is a good thing. It is just very insensitive to say that to someone who has shared their struggle in chronic pain with you.

Please do not ever take your health for granted because we rarely get warning when things go bad. Becoming chronically ill can go from bad to worse very quickly. If you love someone with a chronic illness, tell them you appreciate the things they can do. Listen to them cry and resist the need to “fix” them. The more you try to fix them, the more broken they feel.

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You Don't Have to Be 'Old' to Have Arthritis

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Let’s get straight to the nitty gritty here. I’m not old. Well my kids would say I am, but contextually I’m not. I’m pushing 40, but was diagnosed with a rare type of rheumatoid arthritis at 14 years old. I’ve spent a lifetime on and off crutches, in and out of wheelchairs and hospitals. I’ve spent forever looking pretty damn normal in between times.

For a good portion of my 20s, I made up elaborate reasons why I looked like this….When I used a stick, crutches or splints, it often brought up the tiresome question, “What have you done to yourself now?” I’d reply with various responses:

“I fell in a skiing accident.”

“I went down in a bad tackle last week at football.”

“My dog tripped me over.”

“I was escaping a bear and slipped.”

“Whilst running from an alien invasion I fell down a ravine.”

It became easier for a while to make up stories than it was to try and explain how someone who looked so young and well could be so ill inside.

Then there’s the word arthritis.

It makes you think of your granny, right? It’s an “old person’s” problem, caused by aging and living a good, long, active life.

Except at 14, I hadn’t lived a good, long, active life, and people saying,”Oh, you can’t possibly have arthritis at your age,” was surprisingly unhelpful.

So I made up tall tales, mostly to amuse myself and occasionally because I just thought, “I can say anything right now. You don’t really care about my answer. It’s not going to change your life, so what does it matter?”

The problem with much of the media is that a lot of these rare and unusual diagnoses are overlooked, or in my case hugely overgeneralized.

Arthritis. We all know what that is, right?

In fact, everyone knows what osteoarthritis is, just not rheumatoid. Pretty much every elderly character on TV ever has complained of creaky knees, hips or back, the weather effecting their bones, their arthritis giving them problems.

Osteoarthritis is a degeneration of the bones, rubbing away through wear and tear. Rheumatoid arthritis is a swelling of the tissues within the joints, that causes inflammation, pain and joint deformation.

They are very, very different with two very different causes.

One comes with life, one is caused by the immune system.

One generally comes with age. One can effect anyone, even very young children.

Rheumatoid arthritis has the added fabulous bonus that it can also inflame organs, and has a whole host of other invisible complications and symptoms that no one can see, and will invariably struggle to comprehend.

Next time someone youthful tells you they have arthritis, please don’t say:

“Oh you are too young.”

“Oh you look too well.”

“Isn’t that an old person’s problem?”

“How old are you?!”

“My nan/grandad/elderly relative has that.”

Don’t. Please. Don’t.

Just say, “Hey that sucks. Is there anything I can help with?”

Or ask compassionate questions: What’s the treatment? What strategies do you use to manage? How has that changed your life?

Ask me anything about my life, just don’t, for the love of God, tell me I’m the same as your gran, or too young to have arthritis. Evidently I am. I’ve stood right in front of you, having been sick with this disease for 25 years, and I’m not yet 40.

Yes, I definitely do have arthritis. Plenty of specialist doctors did, in fact, extensively check before labelling me an “old lady.”

Thank you.

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How Saying 'I'm Fine' Helps Me Stay Hopeful for the Future

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There’s a difference between being tired and having fatigue. There’s a difference between intermittent pain and the daily pain that comes with disease and flares. What I say or show does not always reflect how I feel. There is a difference between “feeling fine and functioning” versus “feeling fine and actually living.” I understand that saying “I’m fine” doesn’t give anyone any indication that I’m not fine, but it gives me something to say without having to constantly complain or lie and say I’m doing well. It’s the same concept when any woman says she’s fine. We all know that means she most definitely is not fine.

For myself and others alike, feeling fine is an actual feeling, just as much as feeling happy or sad, good or bad. All “feeling fine” means is that the threshold for how I typically feel has not moved, despite it being higher than what you would naturally expect of someone functioning as well as I am.

Having an illness, or any trial in life, does not define who you are as a person and it most certainly does not stop your life. So pain or no pain, symptoms or no symptoms, flare or no flare, I have to continue pushing forward in life. Refusing to let chronic illnesses dampen my dreams and aspirations results in resilience and character, determination and strength and the ability to push through the pain and fatigue, nausea and vomiting, anxiety and tears. Ultimately, you learn to function at this new threshold.

This threshold, however, unpredictably changes every day, adding to the challenge of functioning normally. Therefore, it is hard for someone with an illness that flares to plan too far ahead, and it’s why we “constantly cancel.” We never know how we are going to feel when we wake up. Every morning is a surprise. Feeling “fine” includes the pain, daily symptoms and side effects I struggle with but have learned to live with and adapt to daily to function as much as possible. If I cancel, complain or sacrifice some pride and ask for help, the flare is probably considerably bad.

This is often true for anyone who is struggling – no one’s challenges are “better” or “worse” than others’. It’s something you just simply have to learn to understand. While this is often challenging at times, I cannot overuse this excuse or cancel too often, putting life on hold. I cannot let it control my life or define who I am. Rheumatoid arthritis is something I have, not what I am. I have SMAS but I am not superior mesenteric artery syndrome. I am an aspiring writer. I am a volunteer. I am a student. I am a daughter, a sister, a niece and a cousin. I am fearless, and most days I am also fine.

woman smiling with a tube in her nose

I have come to realize there is another side to this life. Struggling with rare and chronic diseases and constantly being in the hospital or at doctor appointments is not the only side. The other side holds my future, my career, my wedding and children. It is essential to always remind myself of this side and try to believe in it and strive to live in it. There is more to my life than my illness and I have more to offer than co-pays. Feeling fine is what allows me to live on the other side of illness where I can truly be full of light and hope rather than just giving in and crawling back in bed like I would like to do.

While it is not always as easy as it seems, and some days pushing through falls victim to needing an important rest and recovery day, it is also not impossible. Feeling fine is what makes it possible. Feeling fine means: Hold these pills, I have a future to chase after.

This post originally appeared on I Had a Good Day.

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Going Through the Grieving Process After a Chronic Disease Diagnosis

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I never thought that in being diagnosed with diseases that I would lose a sense of purpose. It is a very odd thing to try to explain, but with having illness, it is almost the same process as grieving the loss of someone you love…in this case, yourself.

I have been seeing a mental health specialist for a few months now, and it’s been the saddest and probably the most difficult thing I’ve ever had to do. Most people out there think that disease takes over your body, but it can actually take over your mind and mental state as well.

Since being diagnosed, I lived with the daily obstacle of focusing so much on who I had previously been, and what I was capable of doing before. I was in denial that who I was prior was not going to resurface, and I was in even more denial that my rheumatoid arthritis and other autoimmune conditions would be something that I’ll have to live with for the rest of my life. Yes, medications are out there that may help to make your symptoms less severe, but there is no cure. It was during Christmas time that I had an appointment with my therapist, and we both decided that it was time for me to accept this “different” me and try to be OK with what I have been set up against.

I went through a grieving process, letting go of the exercise I was once able to do, the days of sleeping so soundly without pain and insomnia, and thinking back on how I used to be able to go full days without needing naps for hours in the afternoon.

I sat in the office and tried to come up with things that were positive about my current lifestyle. The only thing I could say was that I believed that this had all made me stronger. Almost three years ago, I’d never have been able to handle the amount of stress and problems that come with having chronic illness. Most days, I’m hitting so many roadblocks. But, like I said, current me can laugh about this and try not to stress.

From that point, I found myself closed up and into the next stage of anger. I had nothing to say. I held so much anger within at the fact that my life was the same everyday, no improvements. I felt like a broken record to not only my therapist, but my family and friends. Can you imagine being stagnant in a state where even after taking upwards of 10 medications, you can’t even say that you’ve improved?

I wanted to know what I had personally done to whatever higher being there is to deserve this. I kept thinking that I had somehow caused this, when deep down, I knew there was no way I brought this on myself. I blamed myself for being how I am because I didn’t have anyone else to blame. That is why chronic illnesses are so hard to understand. You question every single day why you are in the state you are in when there is no concrete answer.

I’d say that I’ve now moved on to the depression stage — the one where I am so undeniably sad and feel like I have lost all purpose in the world. I feel like I’m this lost person who wakes up every single day and does the same thing, only to repeat the next day.

Most people identify themselves by their career, and since I currently cannot work, I just feel like I am unsure of myself and don’t necessarily have a purpose. It’s a really hard thing to feel like you have a lot you can contribute to society, but you have no outlet in doing so. I am at a point currently where my fatigue is so bad that it’s hard to even make myself meals or stay awake for more than a couple of hours without needing to go back to sleep.

I know the final stage of grieving is acceptance, and that is my ultimate goal. I have a long way to go, but it’s incredibly important for others out there to know that it’s not uncommon to face mental health issues when you have physical issues.

In my case, my doctors never informed me this could happen. It just struck me one day, and I have been trapped since. I wish that I could easily wake up one day and be back in my previous life, but I know that isn’t a reality, which is why I must keep going.

I do have a good support system, which I am very grateful for, but I know they do not understand the extent to which I am experiencing these things. It only makes it that much more important that I learn to depend on myself, and find the strength I need from within.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Why I Believe Being Diagnosed With RA at Such a Young Age Was Lucky

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Receiving a diagnosis is one of the hardest things in life a person and family can go through. You never believe it will happen to you. You don’t wake up feeling “off,” maybe a little achy or stiff, and think this is a feeling you will grow accustomed to as it continues to worsen. You can never fully grasp the concept of what such an event feels like until it happens to you.

To the mother who woke up stiff and achy, it would only make sense for her to believe these feelings were due to the stress of chasing three young children around and staying ahead of chores the night prior. To the athlete who trains hard every day but woke up one morning to a swollen joint, logically she would believe she somehow injured it the night prior or perhaps pushed herself too hard. To the teacher who is instilling knowledge into our future generations or the musician who’s fingers dance across the ivory keys. To the grandmother who is passing along her secrets to her grandchildren, or to the person simply trying to enjoy life and its greatest adventures. It can happen to anyone.

Although the general population believes I am “too young” to have rheumatoid arthritis, I do, and I have for 20 years now. There is a popular stigma centered around the notion of arthritis that correlates to our elders’ pain and arthritis from years of wear and tear. Unfortunately, autoimmune diseases don’t follow a timeline or adhere to such stigmas. As much as I would love to tell my arthritis I’m too young and to come back when I’m 70, I must deal with it in the here and now.

Rheumatoid arthritis is an autoimmune disease; your own body is attacking itself. Osteoarthritis is when you have cartilage break down due to years of wear and tear, hence why it is most common in our elders.

My chronic illness has developed with me, and we’ve grown together. There was no sudden hold put on life. There was no emotional or physical battle trying to understand why I felt the way you did and how to fix it. There was no what-if thinking. What if I had gone to the gym more? What if I swam instead of ran? What if I didn’t do this or that, what if I had done this or that?

When it’s a diagnosis you received shortly after birth, you don’t remember any of the trials and tribulations that led up to the diagnosis. You didn’t have to spend hours a day researching the disease, side effects and symptoms, treatments and remedies, searching for the most innovative options out there. Receiving a systemic, autoimmune disease diagnosis is scary and undoubtedly you go through a grieving stage of pre-diagnosis life and feelings of loneliness. Then comes that first year or so of figuring out what your new normal is and what your flares feel like, when to call the doctor and when to wait it out at home in agony. Not only is it a huge adjustment for the patient, but for everyone around them as well.

Think of it this way — suddenly you are taken out of your home, without anyone, and thrown into another country that speaks a different language and has their own sets of beliefs, traditions, and cultures. Eventually you learn to navigate and fit in, learn the essential part of the language and the general concepts of their culture, but you never regain that feeling of belonging. Slowly your loved ones are brought in, but they must learn at their own pace and are just as clueless as you were originally. They are behind you despite their best efforts and yours to educate them because they cannot fully understand what rheumatoid arthritis really is without having it themselves. This is the general experience of a family receiving this new diagnosis. My early diagnosis allowed me to skip all these steps of acceptance and adjustment. Although my family had to go through some of this, they too could learn as I grew and help adapt as life continued moving forward.

I feel lucky to have received my diagnosis so early in life that I you can’t remember any different. Yes, I did just use the word “lucky.” You’re probably wondering how anyone can consider a chronic illness “lucky.” Rather than being taken out of the world I knew and thrown into a world opposite to everything I once relied on, I simply had to adapt as I came across each situation. I didn’t have to figure it out all at once. Growing up with (juvenile) rheumatoid arthritis was like someone growing up left handed in a world dominated by right handers, simply adapting as they come across something created for right-handed people. Some learn to use their right hand during these situations, and others adapt whatever they are using into something compatible for left handers. With regards to understanding the difference in age of diagnosis in accordance to how it affects the rest of your life, it is as simple as this analogy.

Being diagnosed that young is not all glitz and glamor. Of course, I would have rather not developed this in the first place. Dealing with this as a child, even if it is all you have ever known, still does have some negative effects. Years of pain and struggle, medications and side effects, progression and damage take a toll on not only the physical body, but the emotional and mental wellbeing of the body. One autoimmune disease leads to the next. One medication and associated side effects lead to the next medication. It becomes a domino effect, and the longer this protocol is followed, the more havoc is reaped on your body. I do not know of anyone who doesn’t experience a mental health problem and struggle with their emotions, typically anxiety and depression, after years of built-up emotions from battling RA.

I’ve been asked if I had to be diagnosed with RA at some point in my life, would I choose an early diagnosis or a late one. In these simple terms I would go with the early diagnosis. I understand that a later diagnosis would have meant I’d spend less of my life dealing with disease and doctors, hospitals and medications. As much as I love the idea of having the first half of my life without any disease, I believe it’s been easier for me to adapt physically and mentally at a younger age. With a little love and strength, new and improved medications, I was still able to lead a mostly normal childhood and was very active in music and sports throughout the years. Every now and then there were setbacks, but everyone has setbacks in life whether it is medically related or not.

Unfortunately, we do not get to choose in life, or I would never have chosen this in the first place. However, we must deal with whatever life throws at us — and I am thankful for all the love and support I had growing up and continue to receive.

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