This is all one big roller coaster ride.
Everything started on the summer of 2008. That's the last year I was "normal" so to say.
I was in school trying to finish my requirements for a High School Diploma, and it was such a hot summer in my city, that the mountain near my house had a massive wild fire. The fire would trigger a simple bronchitis and though that has nothing to do with the rest, it has no contribution to my present state, this is the last time I ever felt healthy again.
After that, it was a few years of turbulence. My health instead of getting better seemed to get worse with the years. from 2008's Bronchitis, Costochondritis and misdiagnosis', many severe colds, flu's, etc, to a chain of severe migraines at the end of 2011, my mental health spiraling down into a dark, dark place, I began to feel as if I'd never feel better. It was not true, of course. I felt better with time and medicine, but for some reason, something felt off during my day to day activities after that year. Something seemed to have changed and I wasn't sure what. I just realized that everyday, I was so tired.
It was in 2012 when I found out what that was. I had noticed one of my fingers seemed to be out of alignment with the rest. Honestly, I was convinced I had twisted it, seeing how I had carried something quite heavy. But it didn't hurt. I didn't feel pain when I moved it or bent it or even when I picked things up. I told my mom and she also had no clue what could be behind it all. And so I made an appointment with my local clinic, where they already knew me because of so many visits over the years. My doctor at the time ran some tests and analysis. It seems that they had actually started having my blood tested earlier than I had thought because she figured there might've been something wrong from previous blood work. And so in Spring of 2012, the tests I took confirmed I had the Auto Immune illness
Rheumatoid Arthritis. When she told me, it was so serious and scary; the way she made me sit down like I've never had done before. And she told me some details about what was going on. About how RA is an auto immune disorder and not anything to do with the skeletal system. How the body attacks itself and harms the articulations in the body especially, but also internal organs and glands. How my life expectancy has been cut by at least 20 years. And I was so numb. I didn't know what any of this meant for me and my future at the time. All I know is that when she said "I'm sorry" I felt like I wasn't going to get better. But she tried to reassure me with the proper treatments, I could live a long, pretty much normal life, and it was fine. I didn't really know what to respond, I was fine.
And then one day I wasn't.
It took nearly a year for me to see a specialist since I had a low income referral. They told me to wait to see a specialist for the medicines I would need, and so with the diagnosis came the symptoms in a matter of weeks. I was severely tired. I had already been so worn out from the many times I had been sick with something between 2008-2011 that it was hard to see what was a symptom and what was just those other things returning. But it was such an awful feeling, waking up everyday so exhausted, as if I had joined a marathon then worked out for 5 hours right after. My fingers started swelling like crazy too. My knees hurt and then also started swelling. I've been so sickly and accident prone all my life, but this is a kind of pain I didn't think I could feel. I tried to go on about life like normal despite it all. But yeah, that was just not working out. It took so much effort to get up everyday. I spent many months just sleeping and laying in my bed unable to get up because it hurt so much to do so. Sometimes the pain was so severe, I had to go to the ER in the middle of the night, especially when the pain reached the back of my head it didn't allow me to rest until I was given a good dose of Morphine. I couldn't walk well, so errands were out of the question, I couldn't help around my house, I had lots of trouble with basic everyday things, like opening things (bottles, bags of chips etc), I couldn't draw anymore because it hurt to clench my hands, or open the faucet to wash my hands, turn a knob, type quickly. I couldn't even shower or use the restroom without help, but forced myself to do so while crying in pain. It was so humiliating to me.
I think that's when the reality of what had changed hit me. And I got angry.
I kept thinking "Why? Why is it always me? Why the hell did this have to happen to me?" and the more I thought of it, the more I looked back to back to 2008 and everything that happened, it seemed like this was the cherry on top of it all. Instead of being sad, I just became bitter, angry and full of rage.
They gave me Plaquenil, a generic RA medication to help with the flares (as they're called when the body swells with an AI) and though it helped to take some of it away, it only did so much. I was severely depressed and angry and seeing my frustration and lack of treatment, My doctor prescribed Corticosteroids. And they felt great. I felt normal, I felt no pain with them. But by fuck, they are also the worse thing I have taken. I had made the mistake of taking them with small meals (as I had no appetite) and their side effects affected me quite strongly. But when I took them with a large meal, they ended up giving me acid reflux and many stomach issues I had never had before. In the end, the Corticosteroids did more harm than good, their effect fucked up my stomach so much to this day I haven't recovered.
I was miserable.
Even when the first appointment came and my increase of medications with it, I was so severely unhappy. They explained to me the side effects of what these medicines were (No standing in the sun for one, no alcohol at any level for another, only once a week for two). All I could think of was about how I could never go back to being like I was. What I couldn't do. I was scared to do anything in fear of pain. And as I walked into the first appointment with the Rheumatologist and saw all the people who had the same thing I do, but in wheelchairs and with canes, even young people, younger than me, I just wanted to disappear. I felt like I was seeing my own future.
That has been my mentality ever since. I was diagnosed 7 years ago and I've spent most of my life ever since damning the very day I was born. I firmly believed I was a factory defect. I still do, actually. My siblings are perfectly fine, healthy and normal. I watch them in envy, envious of the things they can do and won't do, and of all the things I wish I could do. Of all the things I wished I had the health to continue, to try. And I'm so happy it's not them, because that would've been much worse to me. But inside, I was so sad for all the things I had planned for my future and that I couldn't even think of doing anymore. I can't wear heels, I can't take kickboxing like I had always wished to do. I can't really go climbing or running or pedaling a bike. I no longer have the energy for a full day's adventure. It's very hard finding a job with my lack of experience that I can do. I can't be a waitress at a restaurant. I can't clean hotel rooms. I can't even stand a full 2 hours for a grocery store job. I can't carry my nephews for more than a moment (they're very heavy), I live my day to day life fearing I'll flare, and they say you need to live a stress free life because stress can become physical pain in the form of flares, so I'm on edge so much of the time, and so much more.
I had always prided myself in being independent growing up, but now, I need someone to help me when I can't do things anymore and I hate it so fuckin much. And in a desperate attempt to keep that, I went all these years pretending nothing was wrong. I pretended this didn't exist. I did things I wasn't supposed to (wore heels to a wedding a few years back, maaaaaaaan I'm an idiot, my feet hurt so awfully after I couldn't walk for a few days, I've never done that again), and only a few friends and family knew there was something wrong in the first place. I pretended so much that nothing was wrong that when I came across things and moments that reminded me of what I couldn't do anymore, I was enraged.
That's what I'm trying to change now.
It took me years, but I realized the only way to have peace with this all, the way life has basically "screwed me over", is to acknowledge that I'm never going to be how I was before. Not the way I wish I could be anyway. There are many things that I cannot do and will not do out of fear anymore. I need to learn to be ok with that. I need to learn to let go of those old dreams and make new ones to replace them. Life changed, this whole thing changed me whether I wanted to or not. I need to learn to move on.
Instead I should consider myself lucky. Despite it all, I'm doing ok. It hurts (my hands hurt alot typing this out) but I can still do some things like a normal person. And I've seen so many people's stories who's condition is much more severe than I am. I walk more than I used to now. and I enjoy it alot too. I guess I learned to appreciate movement. I try a little harder to maintain health. I'm a bit overweight, but even so, I'm the lightest I've been since childhood. I still get to go outside unlike those months in which I couldn't leave my house, and though only slightly different, I still have fun in my life. I have access to my medication (one of my biggest stress factors) and Rheumatologist, something I know others might not have. I can still do so much (with my medications, I can do most of the basic things again). And I've wasted so much of my youth hating what happened, the curse of this illness that I felt took away my life so much to the point that I forgot to live. I don't want to do that anymore. Even though things are more limited now to many restrictions, a lifetime of medications and movements, and of course the fear of things taking a turn for the worse because of RA (and
Sjrogens, another Auto Immune illness I got diagnosed with in 2013) I don't want to hate my life and myself anymore. I don't want to blame all my failures in life to this.
From now on, I want to finally fuckin live.
I don't know what changed exactly but something did at the end of 2018. I got very tired of the way things are. I know that it will take a long time. I know that it might take the rest of my life to try to make up for the things I didn't have the courage to do in the past. All I know is that I really don't want to wake up every day hating myself, hating my life and everything when there ARE many good things that I have had. My family isn't perfect but they have never deserted me. They stood by me as I faced this life changing ordeal. And I've been so ungrateful with the way I am, instead of trying my best, I let everything get to me. I have wonderful friends that because of insecurities I neglected and lost a few along the way. That's life, I understand that, but I wonder if things would've been different had I tried to stay in touch more. I have a job that I never thought I'd have, I have nephews that I also never thought I'd see. I have the basics to get through my day's, food on my table, clean water, power, and so much more. I have the power of choice. I love the place I live in. And I'm turning thirty this year. Looking back, one of the things that hit the most is that I don't have a single picture in important moments in my life that I'm in. Life is so fleeting, and I don't have anything to remember my childhood, teen years and early adulthood. I have no memories of participating in my own life.
From now on, I want to live, taking pictures, making memories, meeting people and stopping myself from giving in to that dark part of bad things. Because there's no point of me taking pictures of my journey if I'm not even in the pictures themselves.
