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?
Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.
All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.
Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?
Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…
Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.
I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…
Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.
Only for a moment.
On this past New Year’s Eve an old friend from college made a generous donation to my Life Fund of $100. After thanking her profusely she told me she made the donation in a way of thanks to me. Confused, I asked why on earth she felt the need to thank me when she was the one who had made a donation. Her answer has attributed to many hours of contemplation and wonderment, that of which I’m sharing today.
Over the past few years I’ve gotten used to to people telling me that my illness and unique situation has made them see the ‘good in life’. Which is understandable, I guess. It’s human nature to feel thankful for what we have when seeing the suffering or hardships of others. Personally, I always feel grateful for having a roof over my head and food on the table when I cross paths with a homeless person. Or enjoying all the colors of the world when I see someone using a cane for blindness. Before I was ill I felt grateful for my healthy disposition when I saw someone less fortunate than myself.
Even now, I feel like I have a lot more sympathy for people like me, than I did in the people. To be honest, I used to be really judgmental of hugely fat and or obese people I saw on the street or bus. I always jumped right to the conclusion that their weight must be due to lack of control with food and binge eating. But now I know that many people can’t help their weight if it’s attributed to a medical reason. They could have diabetes or gained steroid weight like I had. There are many medical issues that can contribute to excessive weight gain.
Now, obviously not everyone who is overweight has a medical problem. Yes, there clearly are many people who eat bad food, and a lot of it. Especially in Hawaii. The point is I’m not mean in my head when I pass someone by who’s fighting their weight like I am. Though I still have no sympathy for those people you see in Wal-Mart using the motorized carts while stuffing their face with a giant bag of Lays. I mean come on, you’re just asking for someone to discreetly snap pics of you on their iPhones and upload you to People of Walmart at that point. Have some dignity.
My point, before my mini-rant, is that being ill has broadened my mind. I too see the finer things in life, and appreciate the little things a lot more now. Like my friend Liz, who told me that normally in the past when she’s had to work late and miss spending time with her husband she has been bitter. But upon thinking about me and my struggles she decided that instead of being upset, she would be grateful. Grateful to have a great job with fair employers that treat her well. Grateful to have wonderful husband who loves and adores her. Grateful to be happy and healthy. So on that night, instead of complaining about working late, she decided to be happy that she got paid double for her excellent work ethic and in turn made a donation to my Life Fund as a way of thanks, for being her “unofficial life coach”. The whole thing made me tear up a bit to be honest.
Besides accepting such a huge compliment as well as a lovely donation, the whole ordeal has really made me think. Mostly about how our life experiences change us. My disease, while being a big bummer for me, seems to help a lot of my friends and family gain a lot of healthy perspective. And that in turn makes me happy that I can contribute in some way to help others. Just like how this blog has helped others dealing with RA or other chronic illnesses see other perspectives than their own.
For two years now I’ve been seeing a Pain Management Psychologist, (who is basically a therapist that knows extensive information about medications and how people deal with their pain). He has helped me immensely, not only with my pain, but also how I perceive my disease and the people around me. Each week we discuss mortality, the progression of my disease, the people in my life, and how I’m living day to day. He has helped me find hobbies while not working, reminded me to keep active, and kept me grounded. In a way he has been a life coach.
But now I see that while people can help us on our journey, we also need to learn to help ourselves. And I actually think we already are. In everything we do. Sure others can motivate us in the right direction, but we are the ones making the decisions to change. I may have motivated Liz to feel grateful for her healthy life, but it is she who made the decision to be a supportive friend, and a loving wife. My therapist may motivate me to see the positive parts of my life, but I am the one who chooses to live with the positivity moving forward.
So at the end of the day, while we all have people in our life that drive us to do good, and to be good… We are the ones that choose to follow through.
We are our own life coaches.
And we are winning.
Today my therapist told me that it’s important to address my fears. I guess there is a part of me that’s been hiding from them and from the reality of my disease. So here they are in list form so I can start working on them…
**My own mortality
Each week I am faced with a new diagnosis, often scarier than the last. Two short years ago I only had Rheumatoid Arthritis, and now it’s super aggressive, and I also have Lymphoma, Osteoporosis, possibly Cervical Cancer, and a soon to be increased risk of Bone Cancer.
This isn’t just me looking to the future for remission anymore. With the increasing fractures brought on by day to day activities, the worsening symptoms and side effects, it’s been made clear to me that I am not getting better and that I should be aware of all possible outcomes, including death.
33. I’m 33 and I have to think about the chances of my life ending in the next decade, and not five to six.
Its becoming more and more of an increasing reality with each passing day. I haven’t raised enough to move out and I need to find a new place to live very very soon. I’ve asked, even begged, family members to help and have received very little in return. I always thought that if my circumstances became dire, somehow someone would step up and help me. It’s incredibly horrifying and scary to realize that I was wrong. Blood is not thicker than water as it turns out.
I can only be eternally grateful that friends and even friends of friends have stepped up and made amazing contributions to my health and wellbeing. To those who have supported me selflessly… Thank you.
You’d think I’d be used to the pain by now. But I’m not. I thought I had experienced the worst that my body could deliver in the form of inflamed joint pain… Then my ribs cracked. I felt every bump, every pothole, and every imperfection on Hawaii’s roads today as if they were a tiny Armageddon inside my body. Each time the car hit a crack in the road my ribs felt like they were splitting slowly one by one. Each time we came to a stop it was as if I had all the air sucked from my lungs, an elephant placed on my chest, and a drill sergeant yelling at me, demanding I take in a deep breath.
Every day I feel more pain than the last. A new nightmare setting up shop inside a body that welcomes it with open arms.
**Loss of self
All these crazy medications on the market these days have some of the worst side effects you can imagine. And the insanity of it all is that I started with ONE DISEASE. Rheumatoid Arthritis. But to fix the RA and manage the pain, I had to take steroids, biologics, and opiates. These three types of meds can cause a myriad of health problems including exhaustion, pain, weight gain, cancers, loss of Bone density, dizziness, compromised immune system, and more. I received ALL of these complications including two types of cancer. So instead of ONE problem, I now had several. Two years later I have now ALSO developed Osteoporosis. And the only good medications on the market for really helping with that can cause you to become half of yourself. To function on this medication I will have to have a pain medication pump surgically implanted in my body, take anti-depression and anti-anxiety medications, and basically hermit myself in my home as to not accidentally break my body.
Yes, this is definitely the life I’ve always dreamt of…
But you know, I’m lucky they tell me. Lucky to be alive.
Alive… Is that what this looks like?
Please help me not be homeless by donating here:
Disappointment is a fact of life. It’s going to happen no matter what, at some point, whether you want it or not. Most likely not as I don’t know anyone who wants to be disappointed. But what I’ve come to find during my time being ill is that disappointment hits me so much harder than if I were a normal healthy person.
I remember the days before this, the days I lived normally, had a regular 9 to 5, dated, had relationships, went out with friends at night, etc. There were definitely times where I felt rejection, disappointment, sorrow; I mean these are all parts of human nature and connection. But I got through it, found a way to move on or start over, process the feeling and swallow the hurt, continue on with life as you need to.
But now, when people disappoint me, or upset me, or do something purposefully hurtful, well it’s just so much worse. I guess it’s because when I dealt with bummer situations before, I was able to shrug it off because that was life, you need to take things with a grain of salt, not dwell. And at the end of the day I always knew that there were people out there that just suck. I mean we can’t all be fabulous! As I see it if people’s actions or words let you down you have two choices…
1) You can get mad, throw a fit, and let your sentiment be known that you are PISSED.
2) You can shrug it off. Take the higher road. Move on and learn from the experience, or mistake, whichever scenario the disappointment encompasses.
But when you’re sick, there’s an option three. Now I guess it depends on your illness, be it short lived, or aggressive and deadly like many of us unfortunately. Anyways,
3) Brood. You sit, you agonize, you wonder. And because you’re sick, and like in my case have time on your hands, you go through the scenario or experience or rejection or conversation and pick it apart piece by piece to analyze it.
There’s no sticking a pin in this one for later, you’ve got all the time you want right now to sit, ponder, and brood. Why did that person flake on me? Why did that person hurt me? Why wasn’t I invited to that BBQ? Why was I not thanked for helping someone out?
They may be small things, or large, but when you’re sick, a disappointment that seems small to anyone else is magnified to you. And you can’t stop it. It’s one of those festering sores that you pick at slowly even though it’s started to scab over. You don’t care. You have all the time in the world. And I won’t lie when I say some of my disappointments probably seen silly and ridiculous to others.
For example, yesterday my favorite hair clip broke. Small, silly, replaceable in the eyes of someone else. But for me, I was really upset. I’d had that clip for ages. I’ve never seen another one like it, deeming it irreplaceable in my eyes. Also being poor and broke makes hair accessories not high on the shopping necessity list. It was very handy, I’d always kept it in my bag in case of hair emergencies. I was really bummed. Now, I didn’t cry about it. I mean it’s a piece of plastic. But not having a lot of money at my disposal, or a car to run around looking for a similar product, made the loss a pretty big bummer for me.
On a much larger scale, I was disappointed in someone’s actions towards me last month. So disappointed that it haunts my thoughts to this day. A promise was made, a very important one. And then the person reneged. I shouldn’t be that surprised; the same person had flaked on me in the past several times. But being sick now, that disappointment hit me like a ton of bricks. Why had that person made a promise they knew they wouldn’t keep? Was it a vengeful decision done on purpose to cause me pain? Or did they merely just not realise how hurtful their flakiness could be? Why make a promise? Why break it? Why offer help at all if there was never going to be follow through? Tons of similar questions swirl through my head constantly. I often wonder if I would be this mad or disappointed if I were healthy. If I still worked my 9 to 5, had savings in the bank, if I were more independent, more mentally put together, would a rejection or disappointment such as this one, hit me as hard? I guess I’ll never know.
The upside about disappointments when you’re ill is that since you’re on limited time or borrowed time, or just aware of time in general, you’re less likely to accept people’s bullshit. When I was healthy I was more apt to accepting apologies, or even just bad behavior. I was willing to sweep things under the rug or look the other way. Not so much now.
Mess with me now, flake out, treat me badly, reject me, disappointment me… I don’t need to keep you around. I have no time for disappointing behavior. My time is precious, and the people who share it with me treat me with the respect that I deserve. If you want to behave badly, you can do that with someone else that will put up with your BS. Cause this girl right here, isn’t having it.
If you’d like to help me become more independent and less likely to fall for the BS help of others, please donate to my life fund. I am trying to raise money for rent and life necessities while I’m ill and can’t work.