For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if you will, of seeing myself hiking again, or being able to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.
One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.
However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.
I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?
Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.
But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.
I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.
With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.
Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.
To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.
For fuck’s sake!
Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?
Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.
For fuck’s sake.
I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.
So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.
Well… I say NO.
I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.
Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.
On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.
Let me be okay, if only for awhile.
Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?
My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.
I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice. To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.
When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.
Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have been made since I was 10…
My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.
Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.
With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?
I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.
These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?
Sometimes I feel so bound by my skin and bones. I wonder how it came to be that I was trapped by the very thing that makes me alive. My body feels like a prison and my disease the warden who lords over everything out of my control.
It’s amazing how you can feel completely alone in a world full of people. I have so many in my life who care for me and help support my medical needs. But when you have an illness that is more severe than most doctors have seen, how can you expect regular people in your life to really understand? Yes, they nod and listen to your answers to their questions. The polite questions that broach just enough of the topic to feign interest, but vague enough to not beg a lengthy answer. At least that’s what most hope. The problem with autoimmune disease is there is no simple answer. You try to answer the way you think they’d like, but their eyes glaze over after a minute. So you learn to clip your explanation to something short and perfunctory, knowing full well it doesn’t even uncover the tip of that iceberg.
This is one way you can start to feel really alone in your body.
Your doctors can’t even figure out why you’re so sick, can’t explain why as time goes by more diagnosis’s are added to the list, why every medication doesn’t make a dent in your pain. They have no idea, and you have no idea how to explain what your body has become.
Sometimes I sit by the window for hours, staring at the birds in the garden below. My jealousy of their absolute freedom sits heavy in my throat, like a dry piece of bread I can’t swallow. I listen to music without hearing the lyrics, barely comprehending when one song ends and another begins. Yet the sound soothes me. Reminding me that other people have felt as I do, trapped in their bodies and minds, sharing their feelings through melody, as I do with words.
I watch those birds, extending their wings, turning their faces to the sun, free to fly where they choose. I sit and watch them, as I watch my own hands curve and deform from pain. I wonder if they feel as we do, fear as we do. Do they sit and wonder how they fly and why? Are they alone in their minds as I am, wondering when will be their last flight?
This morning I start treatment again, after a 4 month hiatus while moving and settling in another country. It’s been a long time since I’ve had medication in my body that actually helps my Rheumatoid Disease, as opposed to just put a drug band-aid on it like steroids do. Four months is a long time to go without critical medicine that helps your mobility and pain.
Normally, I am pretty open with others about what treatments I am on, preferring to be upfront about everything. I am not ashamed or embarrassed that I used opiates for a long time when the pain was too much to bear. I won’t lie about the fact that four years of steroids caused my weight to go up so high that I didn’t recognize myself in the mirror. I am also not going to be bullied into the fact that a lot of people don’t like when I use the term chemotherapy to describe my treatment.
This is one of the key issues that we as patients deal with in Rheumatology. Not many can grasp the fact that our diseases are very serious and can take lives. Everyone just assumes, because it’s more well known and talked about, that the big C is the really bad one out there. But Cancer is not the only thing that kills! Many die from complications of Rheumatoid Disease and autoimmune diseases. The numbers would shock you. But because it’s not cancer, or you haven’t heard a lot about it, it can’t possibly be as deadly right? WRONG.
I am part of a very supportive group on Facebook for women suffering from Rheumatoid Arthritis/Disease. We were ripped apart about a month ago by a sickening argument over using the term chemotherapy when talking about some of our treatments. An alarming number of women were very negative about the fact that some of use the very name our doctors themselves speak. Angry that despite the fact that we are in fact on chemotherapy drugs, and go through many if not all the symptoms of dealing with it, we shouldn’t be allowed to say “I’m on chemotherapy”. As if cancer patients are the only ones with the right.
Here’s where I get angry. This isn’t the damned Pain Olympics. It’s not a competition on whom is more sick and who can have what treatment! We are all sick! Some of us dying! Have some fucking empathy!
My doctors, including my Rheumatologist, all refer to Remicade as a “chemotherapy drug”. Before starting a round of infusions, I am given the same list of side effects and ailment symptoms that any other patient on chemotherapy gets. Infusions, while helpful to my RD, are brutal on my body. They make me nauseated, I vomit, I sleep for hours with no real rested feeling in sight, I lose weight, my hair falls out, and my skin turns white and crepe-like. But it’s not cancer related, so it’s not really chemotherapy right? WRONG.
If it’s not really chemotherapy, then why has my Lymphoma and Cervical Cancer gone into remission after being on it? If it’s not chemotherapy, then why do I experience the same side effects as those with the big C? If it’s not chemotherapy, then why do ALL of my doctors use that term?
Because…. It IS Chemotherapy. It may not be the same doses as different diseases and illnesses, but it’s the same drug. It’s a drug that helps many people to live better lives, that they may not be able to have otherwise. It helps me. That’s all that matters. I have the right to call it what it is. It’s chemotherapy, and it’s saving my life.
So, today I will make my way down to my local clinic. I will be weighed, have my temperature taken, and put into a bed. I will be monitored like a hawk, because these are serious drugs. Four hours later I will emerge, exhausted beyond comparison to anything I’ve ever experienced, nauseated and yet hungry. I will go home where my mom will watch me for 24-48 hours to make sure I don’t get violently ill-it’s happened many times. I’ll barely keep my eyes open while I attempt a few bites of food and sips of water, before falling back into coma-like sleep for days. I’ll continue to lose weight, dark circles forming under my eyes, my skin thin as paper, more hair falling out with every shampoo and hair brush. But I’ll be closer to pain free than I ever have been.
I have Rheumatoid Disease, and I’m on chemotherapy.
As a gal living with Rheumatoid Disease, I face challenges day to day, often those challenges being the correction of what people think I have, as opposed to what I actually have. I know, I know, I probably sound like a broken record half of the time, but I wouldn’t have to if people would just LISTEN the first time round. So here I am today, sharing the differences again… Hopefully this time is the charm…
1) “Oh, you have Rheumatoid Arthritis? Everyone has that. I think I might have it.”
No. Correction: “Everyone” does not have that. And trust me when I say, if you have it, you would know.
* First off, the main difference between Rheumatoid Arthritis and Osteoarthritis, which is a much more common variety of arthritis, is the symptoms. Osteoarthritis is caused by the eventual breakdown of joints over time, which is why it’s so common in the elderly. Rheumatoid Arthritis is an autoimmune disease where your body’s immune system actually attacks its own joints. These are two different types of arthritis, that provide two very different outcomes on the body.
Osteoarthritis is the most common form of arthritis. When most people are referring to arthritis, osteoarthritis is typically the form they are talking about. While Osteoarthritis is known to affect the elderly the most, it can happen in younger ages as well. It’s based on the wear and tear of the cartilage of your joints, so weight gain, joint injury, work that engages using your joints often, and genetics, can also play a role in getting this form of Arthritis.
Rheumatoid Arthritis, or Rheumatoid Disease, is more common in women, even more so after the age of 40. But it’s not only limited to that age, obviously, and also is seen in younger children, known as Juvenile Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease that causes pain, stiffness, and swelling in the joints. The most commonly affected joints are the hands, wrists, feet, knees, elbows, ankles, and shoulders. But this disease is a double edged sword, as it not only causes pain through the inflammation of those joints, but also affects your body’s organs and immune system as well.
So unlike Osteoarthritis, which causes pain in the joints, and stiffness in movements, Rheumatoid Disease also attacks the body. So on top of pain, stiffness, swelling, and decreased mobility over time, patients with severe Rheumatoid Arthritis also have to deal with decreased immune systems, that make us vulnerable to life threatening illnesses. Our disease also opens us up to bone thinning, which can in turn lead us to Osteoporosis, another disease that I now have because of RA. I have to administer a daily injection into my belly with a sharp, painful needle, to deliver a medication called Forteo into my blood stream. Every single day. And, yes, it does hurt.
Patients can also get heart disease, stroke, several forms of cancer, lung problems, tuberculosis, anemia, and vasculitis, just to name a few. As well as host a laundry list of other issues including, but not limited to, depression and anxiety disorders.
So, please, before you open your mouth to state that “everyone ” has my disease, or in fact that you have it too, when you don’t, just think about the truth of your statement. Because blurting out incorrect facts to a person with a legitimate disease is beyond frustrating, and tends to make you look the fool.
2) If you exercised more, you wouldn’t be sick.
You know how people cringe when they hear certain sounds? Like nails on a chalkboard, or a metal chair being scraped back on a hard floor? Sounds like that tend to pull an involuntary response from us, a shudder, or a full body tense-up, that leaves us uncomfortable and stiff. Well, that tends to happen to me anytime I hear the phrases:
“If you exercised more you’d…
“If you were vegan or vegetarian, I bet your disease would go away…
“Healthy people don’t get sick, so you’re just living unhealthy…
Remember how I just talked about not wanting you to look the fool? Well, you might wanna go back and read through that again. First of all, there are THOUSANDS of people who have thought they were living completely healthy, active lives, who’ve turned around one day, and (BAM) they have cancer! In fact I just caught an Uber ride-share a few weeks ago, and my driver told me his sister had just passed away from stage 4 pancreatic cancer. He was of course devastated, but even more so because his sister had no idea she was sick until the very end! She lived an extremely healthy and active lifestyle, taking part in countless marathons and triathlons, and was funnily enough, vegan.
I understand that it is very trendy right now to be vegan, gluten free, vegetarian/pescetarian, wheat free, raw diet, green living, wonder hippies. I’ve seen the articles, read the magazines, watched the reality shows. I’ve seen the celebrities with their mats in one hand, being photographed on the way to Bikram yoga, with their kale chia smoothies in the other. Everyone is skinny and toned and tanned. Well, I might be too if I had a hundred thousand dollars a year to spend on a personal trainer, personal chef/nutritionist/dietician, have a sun bed in my home gym, and could afford the new Kate Hudson clothing line. Then again, maybe I couldn’t.
I’ve been sick for almost four years now. But truth be told, in that first year, diet and exercise wasn’t a large concern for me. I was still fairly active, going on walks and hikes, and weekend trips to the beach happened more often than not. But I was still eating fast food, and junk food, and basically whatever I wanted. Prednisone had not yet affected my weight, like I had been warned it would, and I was still fairly slim, and curvy.
It wasn’t until year two, and now three, that my weight drastically changed. I developed Cushingoid, also referred to as Moon Face, which meant my cheeks and chin ballooned out, causing my eyes to look sunken in, and everything else to just look fat. I gained 75lbs over the course of two years, that rested mostly in my belly and breasts. And once the weight gain became noticeable I completely switched my diet. I cut out soda, fatty snacks, trips through the drive-thru, candy, and a lot of carbs. I started drinking more water, eating tons of fruit and vegetables, and only eating healthy proteins, and very little carbs. The thing about Prednisone though… is as long as you’re on it, you’re going to keep gaining weight. My doctors have told me I could be eating the tiniest amount of food possible to get by, and be working out hours upon hours a day, but if I’m still taking steroids, I might as well be eating all that junk I gave up. I’m still going to gain weight. Now, will I actually keep eating that junk? No, of course not. I like my diet now. I like my fruits and vegetables. I like drinking water and tea instead of coke. And I love cooking for myself, which means I control what I put in my body.
I live a pretty healthy lifestyle right now. The other night at my family’s home, I ate a giant serving of Kale salad to start, followed by 2 oz of roast chicken, half a roasted red potato, and 6 spears of asparagus. I was full. And I refused dessert later on as well. Not because I’m dieting, but because I truly did not want it. I was still full from dinner, and didn’t need sweets to end my evening. I’ve learned that I do better “grazing”, eating small healthy meals throughout the day, instead of 3 large ones. And as I said before, I snack mostly on fruits, vegetables, and healthy proteins now. I truly cannot remember the last time I went to McDonalds, or ate a bag of chips.
So to recap… I eat a healthy, well rounded diet, that leans more towards Vegetatian than Omnivore. I get regular exercise when my body allows it, usually 3-4 times a week if I’m feeling good, and 1-2 when I’m struggling with pain. I drink well over 8 glasses of water a day, as well as juice and tea. While I love dessert, I never overindulge, usually only eating something of the sweeter variety 2-3 times a week, and only in moderation. And I take care of my body, meaning I use a fantastic skincare regimen by R+F on my face, I moisturize my limbs daily, and exfoliate dead skin as needed. For a “sick” person, I do more than the average patient in attempts to stay as healthy as possible and not add to the stress my body is already under. So PLEASE think before you speak when you tell me I would be cured if only I lived a healthier life. Because I’m betting if you really knew me, you’d be surprised to learn how very healthy I am, despite my incurable disease. Hell, I might even be healthier than you!
3) You should just go off your meds. I bet you would feel better if you stopped taking so many drugs.
When people tell me this, I have a really hard time with the struggle to not hit them in the face. The rage that consumes me runs deep, that’s how very serious I take this comment.
Going off of pain medication isn’t like the decision to stop taking Advil for your work-related headaches. It’s not like switching to a different multivitamin. And it’s certainly not a decision that can be made on the fly because you’re not a fan of Big Pharma. To be clear, I am not a fan either. But for now, Big Pharma is responsible for keeping me ALIVE.
I have gone off my meds on purpose, twice, in the last three and a half years. And to be clear, I didn’t even stop them cold turkey. I tapered down slowly, per recommended guidelines given by my doctors. However, that didn’t matter. My body freaked out from the withdrawal of much needed medicines. Medicines, that sole purpose is to keep me mobile, that help me walk and live an active life. I stopped talking them, or rather aggressively cut the dose down because I was tired of the side effects. Prednisone, for example, has caused 75lbs of weight gain, and while I remain on it, I continue to gain weight.
I had an appointment with a Neutologist last month, whom told me that as long as I’m on prednisone, I could be the healthiest woman alive, and it would mean nothing. I could starve myself, eat less than 500 calories a day, exercise until I bleed, and if I’m still taking he steroid, I will still gain weight. That kind of fact is hard for me sometimes. I hate looking at this body that I don’t feel is mine. And when I get really down about it, sometimes I think ‘why not just go off my meds?’
But every time I do, I end up in the hospital, with either catastrophic withdrawal symptoms, or worse… to be clear, none of us want to be in the hospital. It’s not like a vacation from reality, or a chance to ‘take naps all day’ like one idiot suggested. Being in the hospital sucks.
It’s all also extremely expensive. So before you think about commenting on how my life would be better if I went cold turkey on all my meds… I want you to stop and really think about what you’re telling me to do. You are asking me to not only put my life in danger, but also possibly die. And for all of you out there who don’t have chronic illnesses or diseases, none of us “sick people” have a death wish. We actually want to get better.
So yeah, maybe I am a broken record. Maybe I have told you and others many times what is and isn’t okay to say to someone like me. I’m just hoping one of these days it’s going to stick. That one day, hopefully not too far in the distant future, I can have a conversation with someone that doesn’t involve their “great advice”. Because at the end of the day, unless you have the letters MD attached to the end of your name, your “advice” is more harmful than you know. Stick with what you do know. Be a friend. Be helpful. Listen. Read medical journals if you truly want to know about my disease. Read facts that don’t come from Yoga magazine or from your fave celebrities’ hairdressers best friends nutritionist who knows a guy that had a girl who has what I have. Stop talking about what you don’t know, and concentrate on what you do.’you have a friend who is ill, and she just needs you to listen, be kind, be thoughtful, and just be there.
I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.
I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?
I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.
For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.
A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.
The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.
My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.
I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that
“You make time for the important people in your life, Christine. Actions speak louder than words.”
I cannot agree more with that statement.
I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.
I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..
Actions speak louder than words.
Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?
Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.
Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.
Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps
Today is Mother’s Day.
This morning, as I have done every single other Mother’s Day since I was old enough to understand, I contacted my mom and wished her a very special day. Then I called my step-mom nd wished her a happy day. And finally wrote a post on my social media pages to all the fabulous moms I know, wishing them a Happy Mother’s Day.
And then I sat back against my pillows in bed, and cried. I’d barely put my phone down on the bed before the tears spilled over my lower lids, streaming down my cheeks.
I should be used to this. It’s the second year in a row now that I’ve had to deal with the inconvenient truth of my predicament. It’s not like Mother’s Day is the only day I think about the fact that I can never have children. I think about it all the time.
I think about it whenever I see kids with their moms, especially when it’s little brunette girls that remind me of myself. I think about it when I hear a baby cry. I think about it when I see children’s clothing in department stores, and advertisements on tv for toys. A day does not go by that I do not think about the fact that I can never give birth myself.
Unfortunately, the nature of my disease and it’s severity makes it extremely hard for me to healthily have a child. Can I technically give birth? Yes. Should I? No, I really shouldn’t. Could it harm or kill me? Very much so, yes.
See, the issue is the chronic pain. I could have a child normally, through childbirth, but only if I go completely off my pain medications. Also my Osteoporosis medication, and depending on what I’m on for my Rheumatoid Disease, perhaps that as well. If I have no drugs in my body, then of course I could technically have a regular pregnancy. Technically, being the key word. See, if I go off all my medications then I would be bed ridden, unable to move at all due to excruciating pain that never ever ends. I would be subject to many illnesses because my immune system would crash, and because of the immobility I wouldn’t be able to exercise at all. So really a “healthy pregnancy” would not be on the table.
I’ve read that for some people with my disease, or ones like it, have had regular pregnancies and or childbirth because their diseases went “dormant” for 9 months. But since this hasn’t been medically proven, and has only happened to a small minority of patients, I wouldn’t put my body in jeopardy like that on the hopes that I get “lucky”. I’m never the lucky one. In fact, most of the time I’m the anomaly that gets all the weird and rare side effects. The point is, I wouldn’t put my body, or child, in jeopardy like that.
I met a girl a few years ago that had a child, whilst having a pretty aggressive strain of Lupus, another autoimmune disease that affects the whole body. She was lucky throughout her pregnancy, being one of that minority grouping whose disease went dormant for the duration. But her child was born with scales. No, not the fishy kind you’re probably thinking of, but more of a horrible skin condition. The baby was covered with patchy, flaky skin, that was red and rash-like, covering her whole body. Luckily, it wasn’t a fatal condition, but the baby had to be kept in an incubator for months, enduring multiple daily tests and treatments. The baby was able to go home after four months, and luckily there wasn’t too much scarring, but… to put your child through that.. I mean I know doctor’s must have warned her about complications of pregnancy due to the nature of her disease.
I guess it’s all about personal choice. But for me, even if I was willing to endure unending excruciating pain, and had the reassurance that said pain wouldn’t kill me, I would still not risk the health and life of my potential child. That’s my choice, my right. It sucks, but it is what it is.
Now, yes technically if I really wanted to be a mother there are other options available to me. I could adopt, though it’s doubtful with the severity of my disease that they would choose me as a capable parent. I certainly couldn’t raise a child on my own, so I would need to be married, and have a support system. Surrogacy is also an option, but I think it would be really difficult for me to watch someone go through the pregnancy of my child. And there’s still the issue of needing a husband for love, support, and of course, sperm.
Plus my clock is ticking down. No, not that one. Not the baby clock. That one has been ticking on and off since I turned 25. And two years ago I even went to a fertility specialist to see what my options were regarding my disease and age. I know my options, very limited as they are. I mean my life clock. A couple of months ago I went through a patch of heavy depression. I was hung up on the thought of how much longer I had. My disease, being so severe and chronic, was starting to worry me in the sense of time I had left. And so, despite the strong objections of one of my doctors, I set out to figure out an estimate of my time left on earth. Through research, my medical records, and the testimony of a very reluctant doctor, I was given an unofficial “estimate”.
I had a nervous breakdown and sobbed for a week.
Well, having a child of my own was now definitely off the table.
I would have to be accepting of my adorable kitties being my babes. Not hard, since I love them as much as I love my human family. And in a sense, I really am a true mother to them. I feed them, clean them (or rather their bathroom), play with them, nurture them, and give them unending love. I’d starve before I let them go hungry. I put them first whenever making decisions about going out of town or staying with my mom. They really are my children. My furry feline children.
Although, they can’t really understand what I’m saying most of the time… And my Mother’s Day present this morning was a pool of vomit next to the stove. Thanks, Aureus, you’re a gem. But gosh do they give great cuddles when I’m sore or sad. Cats are empathic, and give love and comfort when they feel it’s necessary. Which for me is kind of on a daily basis. So they are great for me. And regarding Mother’s Day… well, I just have to keep my chin up and remember that while I may never a be a mom to a child, I am a mom to Astrid and Aureus.
Also, I am blessed with having the unending love and support of my own mom. A woman who gives her love openly and freely. It’s never a strings attached situation. I don’t ever have to “owe” her anything, and she has never once told me that her love and kindness must be “earned”. She never makes me feel bad about myself, or treats me with disdain. She is a wonderful mom. She is what moms should aspire to be. I love her. She is a great mom and a wonderful grandma to her grandkitties.
Happy Mother’s Day to mothers of all caliber.
Thank you to all those who read my blog and support me in my journey. Please visit my webpage to lend more support, http://www.gofundme.com/sixthousandsteps
When my doctor first prescribed Prednisone I thought I had found a cure. After just a couple months of severe pain, without knowing what was going on, taking steroids zapped it away like it was never there. I convinced myself that I wouldn’t even need other medications for my RA. I mean why take anything else when I felt so good on the Prednisone? But my doctor cautioned me that I could only be on steroids for a short period of time because of the many bad side effects that would happen. I truly thought he was overreacting or talking about other patients, certainly not me.
Over time we came to realize that a lot of RA medications didn’t work on me. Either I had allergies to them, I built up a tolerance, or they just weren’t strong enough against my ever growing severe disease. And so I stayed on Prednisone much longer than my doctor would have preferred. In fact three years later, I am still on it. True, my dose is much smaller than it was in those first days, but the side effects were still the same.
The weight gain started out as a slow crawl. In fact, in the first year of being on steroids I thought that I was just lucky and had escaped the side effects everyone else would bemoan. The telltale “moon face”, medically known as Cushingoid, wasn’t happening, and I seemed to be faring well with the drug. It wasn’t until year two that I started to see the change. Again, it started slow, and then suddenly I looked in the mirror one day and there was “moon face” looking back at me. The weight started really piling on around the 16th month. Now I can honestly say that I have gained 80 pounds while being on Prednisone.
80 POUNDS! Shocking isn’t it? At first it was most noticeable in my face and breasts, and I thought I could handle a puffy face and a bigger cup size. But eventually it moved to my belly and now I look like I’m 8 months pregnant. I am disgusted when I look at myself in the mirror. It’s not me looking back. It’s HER. The girl who has this life I never asked for. The girl who carries all this pain and sadness and FAT.
And the absolute worst part about all of it is that I eat healthy. I know of cases where people start to put on the weight and they just decide to let themselves go because why not, it’s already happening. But that’s not me. I care about my diet, and my weight, and my body. I have a very healthy food regime, I count calories, I do portion control, I rarely allow myself to snack, and yet.. Nothing I do helps. It just keeps coming.
A typical day of eating looks like this for me:
Breakfast- one cup of tea or coffee, oatmeal, and a piece of fruit.
Mid-morning- a cup of tea (usually Yogi detox or slimming tea)
Lunch- salad, or roasted vegetables and quinoa, or dinner leftovers, or a healthy sandwich
Dinner- 4oz protein (fish, steak, chicken), steamed vegetables, quinoa or brown rice
And that’s it! Does that seem like the kind of diet that packs on the pounds?? No. My weight gain has nothing to do with what I eat. Prednisone is such a terrible terrible drug. I can look at a Snickers at the register at Safeway and gain two pounds, eating not required. The contents of my fridge are very boring. I have milk, cheese, juice, water, and fruit and vegetables in my fridge. My freezer is filled to the brim with bags of steamable vegetables, and frozen proteins. No ice cream, cookies, or chocolate. No pudding cups, or candy, or desserts. All I have is healthy food. My cupboards/pantry hold spices, oatmeal, soups, tuna, and rice. I don’t keep crackers or cookies or anything that could ruin my diet in the house, to avoid temptation.
And still, every morning I wake up and look into my mirror and see her. She won’t let me go. If only one day I will get to glimpse the girl I used to be, just once.
So you know what can be really hard to deal with, when I’m already faced daily with this depressing sight? A constant reminder that I’ve gained weight. Because, if this writing hasn’t already convinced you, I am very very aware of the fact that I have gained weight. I have successfully used a mirror every day since I was probably three or four years old. I know how they work. You look in, and you see what you look like. It doesn’t take a genius to figure it out. You don’t even need to be intelligent. My cats know what the mirror is, for goodness sake, and they love their reflection (good for them).
I know what I look like. I’ve been dealing with the changes every day for the last couple of years. I’ve dealt with the stress of trying clothes on in fitting rooms and realizing I’ve gone up another size. I’ve dealt with putting old clothes in storage because they don’t fit anymore, but I’m unwilling to part with them. I’ve dealt with learning new makeup tactics to slim down my face. Ive dealt with my hair falling out in clumps. I’ve dealt with less and less male attention as my body has grown round and unattractive. I AM AWARE THAT I’VE GAINED WEIGHT.
And in this very aware state of mine, you know what’s really unhelpful and hurtful? The constant reminder of the fact. You do not need to tell me. I already know. I knew before you had the idea in your head to tell me. I knew before you woke up this morning. I knew two years ago when you were still in denial that I was sick at all. Telling me what I already know serves no one but yourself.
I read a really great article today on RheumatoidArthritis.net talking about people giving unsolicited advice to people with chronic illness. The author made a really great point that I think can be applied here as well..
“Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn’t really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It’s like picking on someone else to make yourself feel better. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death,” “You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.”
“Giving advice to people…blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them.”
I could not agree more if these words came from my own mouth. In fact I’m sure the author and I share some sort of psychic connection. This statement while talking about giving medical advice to the chronically ill, can be used in the same context for weight gain for the same group of people.
We already know the problems that we face. We can see our bodies change and we know we have done everything in our power to change it. But there are some things beyond our control! It’s not like weight gain for a regular person. Our weight gain has nothing to do with binge eating, or portion control, or living on a diet of Oreos and McDonalds. Most of us with chronic illness are on very strict diets due to the medications we take. More often than not, we don’t even eat full meals because food makes us nauseated and/or sick. I’ve had days where I’ve eaten nothing but breakfast because for the rest of the day I felt nauseated and gross. Or just not hungry.
So when people give us ‘advice’ about how to handle our weight gain, it really comes off like a slap in the face. It’s insulting. Do you really think I haven’t tried everything I could possibly think of already to get rid of this excess weight? Do you think I’m just sitting at home twiddling my thumbs and eating a King Size Milky Way and lamenting about why I can’t lose weight? Trust me when I say I have tried whatever you want to suggest to me. I’ve done almost every fad diet out there. Gluten free? Tried it. Dairy free? Tried it. No/low carbs? Tried it. Only eating fruit til noon? Tried it. No dessert, sugar, salt, flavor, butter, fat (etc) of any kind? Tried it. Miracle supplements? Tried it. Vegan/vegetarian? Tried it. Lemonade diet? Tried it.
I’ve tried everything you can think of and some that you haven’t read about yet but will tell me about as soon as you have. Please do not insult me and my intelligence by suggesting that I am sitting around doing nothing to combat this disease that has settled upon my body. And I’m not just talking about the weight gain here. I have tried numerous medications, treatments, remedies, and “cure-alls” in my attempts to fight my incurable chronic disease. For you to suggest otherwise is extremely insulting and disrespectful.
Perhaps instead of spending so much time telling me how I should better my life and my health practices you should concentrate on your own. Go ahead and look into that mirror and think long and hard about why it’s so important to you how I look and feel. Read over that quote again from RheumatoidArthritis.net and think about who this lecture really is for. Because I have my stuff handled. I am doing everything in my power to get well and fight this disease. I am very aware of my own mortality, and they way I live my life. So next time, before you want to share your “advice” about how I should handle my body, my disease, and my life, I urge you to look into that mirror on the wall and ask yourself who you’re really worried about. I think the answer may shock you.
**Excerpt taken from “Don’t tell RA patients what they could be doing to cure themselves” by Angela Lundberg on http://www.rheumatoidarthritis.net**
Thank you for taking the time to read my blog. If you would like to help support my fight against severe Rheumatoid Disease and Osteoporosis please visit my page at http://www.gofundme.com/sixthousandsteps
As someone who has a lot of time on their hands, I find myself on social media quite a bit. It’s easy as pie to just tap my phone to see what’s been posted on Facebook or Twitter, or to have a quick laugh on Reddit. Quite honestly, I probably check my Facebook status anywhere from 15-30 times a day. A bit excessive yes I know, but be honest with yourselves, you do it too! Seriously, why don’t you go ahead and count sometime… I bet you’ll be surprised at how often you do it.
I think it’s part of human nature, the incessant desire to never miss out on anything. We want to be a part of everything and anything, and we feel let down if we aren’t “in the know”. This could pertain to anything too, be it sports scores, which celebrity is shagging another, your own friends relationship status updates, or how many potato chips the girl who’s dieting in the cubicle next to yours just ate. We have to know each other’s business, secrets, feelings, happiness, and pain. It’s just the way it is. We are obsessed with information.
My own personal vice is Who has read my blog?
I constantly check my stats on WordPress and Facebook. Has anyone new read them? Did they like what I wrote, did they leave a comment? Do people understand what I’m feeling? Am I making sense? Do they connect with the words on a spiritual level, or a physical one? Or do they even read them at all?
Have you ever noticed that you can post something online like a really long status update that’s a few paragraphs, or a blog, or an article, and people click like within seconds of you posting it? What exactly is it that they are liking? Cause it’s not your post, there’s no way they read it hat quick. So basically they like that you posted anything at all. And then you have no frame of reference on whether someone truly liked what you posted because they are just obsessive “clickers”. Someone posts something and hey are compelled to immediately react to it. Drives me nuts.
But why am I really annoyed by this? I mean, I don’t write my blog for anyone but me. Seriously. I may say that I love checking my stats and enjoy reading comments left, but at the end of the day, my blogs are for me, myself, and I. They are a way for me to express my darkest thoughts and feelings. Because in a way, they don’t feel read until I put pen to paper, or in this case-stylus to kindle. When I see my words, my feelings, my thoughts, well, that’s when they become real. It’s like saying something out loud makes it real for some people, well, writing it down makes it real for me.
It helps catalogue my thoughts, wishes, and dreams. I can always go back through them and remember exactly how I felt on that one day. Just like a diary, my blog is an extension of who I really am on the inside. So maybe my obsession with stats checking is really more about wanting to validate that people around me understand how I’m feeling.
In my last blog I talked about realizing my fears. Actualizing them and understanding how they affect my life and how in reality they have made me who I am today. Before writing that blog I lived in the fear of people knowing what I’m really feeling. I was saving their feelings and making them comfortable by not sharing my truths. And for what? So they don’t have to feel bad about my disease. What a senseless waste of time that was. Why should I hide what was really going on? Why were others comforts more important to me than my own? I guess I realized I was people pleasing, something that I’ve given up in recent days. I learned through putting my feelings out there that I was doing more damage than good. Mind blown.
Life is a journey. We learn new things every day, especially about ourselves. It took me three years to learn to put myself first. That time frame sounds ridiculous when I think about it, but that was my reality. But then I put my feelings into words and made the necessary changes. That’s what my blog helps me do. Realize what needs to change, how I can grow, and make it happen through actions.
Todays life lesson and realization is that social media does nothing for us if we aren’t commiting to being real and being ourselves. You’re not doing anyone any favors by liking every single thing that’s posted, or checking statuses every two minutes. You’re just feeding a compulsion to know information that isn’t necessary for your life. What we should really be focusing on is OURSELVES. What helps us move forward and grow. My life isn’t going to change drastically if I have more followers on Twitter or WordPress. The only thing that should matter is me, myself, and I. How I live, how I learn, how I grow. Everything else is just fodder. It’s time to remember that I am here for me.
If you would like to help support me, please visit my page here to learn more about my journey. Thank you.