The mad ramblings of a girl on her 10 diagnosis anniversary. I apologize for making little sense. I decided to make this video last minute. "Happy" lupiversary to me.
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I'm coming up on my 10 year anniversary of my diagnosis. When I was first diagnosed there was a lot of scary literature online with 5-10 year mortality rates. I'm sure some of that still exists. Yet here I am, at the ripe old age of 26 and I've been officially sick for 10 years. My first definitive symptom started 13 years ago though, so really I've been going even longer. Ticking along with my multiple diagnoses longer than a Google search would lead you to believe I should. My quality of life is anything but glamorous but I try really hard to remind myself that I'm pretty sure I'd rather be alive. I'm not going to lie and say there have not been a lot of days where I didn't want to be. I've always been the socially inept, academically inclined little nerd. Until I couldn't be. Until my health in every way possible took away my ability to finish out my plan for myself and have no one close to me understand. I didn't have many friends to begin with and I have lost most of them through the years from growing apart or me pushing people away. I imagined myself having a much different life. I imagined it being much more fulfilling. I think that is probably how alot of people feel, but I feel like most of my choices were taken from me these past 10 years. So now I've settled on not completely hating my life alone with 2 cats. I try to enjoy my job as a pharmacy tech as much as I can. I spend time with my family. And I pretend at all times that I am not in horrible pain. When I'm shifting my weight in my chair because the back pain is unreal. Trying to laugh so I can inconspicuously crack my jaw for the 5th time in 10 minutes. Wiggle my fingers over and over because my hand is stiff and hurts like hell. Try not to let anyone see me blowing blood into a tissue because I have ulcers in my nose again. Hide my hands so people don't comment on how they're blue. Ignore stares sitting on floors while shopping for bras. Hiding a limp because I don't need the questions. I spend more time pretending to be well than anyone could imagine. Its time consuming. I don't want anyone to realize anymore how bad off I am day to day. I don't want people thinking I'm incapable of doing my job. I don't want pity. After 10 years though, it would be nice to be able to drop the act, and just have people accept that this is me. I am the same, sick me. I'm not getting magically better, but it's ok.I need an adventure buddy. A friend to get through this whole life thing with. So far the journey has been far from easy. I thought my life was going to take a drastically different path, I'm sure most people could say the same thing. Every aspect of my life has turned into "playing it safe". I do everything to not upset my disease ridden body, and it's getting old. I love hiking, I love being outside, I love swimming, I love bike riding. I love doing a lot of things that this body hates. I'm always afraid to take the risk, because I'm alone so I'm the only person I can rely on. If things go sideways how am I going to pay the bills and get my meds? It's extra scary when you're sick. I wish so much that I had a friend, a partner, to navigate things with. Someone to push me to take the risk, be my adventure buddy. Someone who won't mind to be there for the possible fallout, the sick days that will follow. I have a travel bucket list that I'm afraid I'll never see through. I'm so sick of feeling like in order to be alive I'm not living. I'd really rather die next week doing something fun than spend another minute stuck in this apartment alone with my two cats. I don't want to play it safe anymore. I want to live.
How do you explain lupus to new people without scaring them away? I used to very boldly tell anyone who would listen I have lupus and what all it was. While I am still completely comfortable talking about having lupus and explaining it to people, I've found myself trying to keep it out of conversation with new people as much as possible. I feel like the older I get the more being sick is a real drag again. Oddly enough during college I wasn't out parting and going out often so I wasn't missing much other than class for the most part. Now I feel like I'm back in the boat of missing out on a lot because I'm both financially struggling (because I'm sick) and socially struggling because I'm sick. I can't go out during the week because I'm pretty tired from work, and I can't go out on the weekends because the Methotrexate wipes me out and I can't drink when I take it on Friday nights anyway. I don't even know how to explain to a healthy 24 year old how incredibly frustrating my life is right now trying to find a balance. I want more than anything to be able to fake it until I make it and at least give off the illusion of being normal, and let me tell you I've been trying really hard lately. It's really starting to catch up with me.
I could probably sleep for 2 days completely unfazed right now and wake up still exhausted. My clothes hurt. It hurt to have a blanket touching me last night. Getting in the water for aquatic therapy hurt yesterday and the lady probably thought I was a big loser, the 24 year old kid who showed up 15 minutes late. I didn't even want to go. I didn't want to leave my apartment. I wanted to lay in bed and have a pity party because it hurt to move yesterday morning and I made myself anyway. I went home and took a nap and cleaned my apartment top to bottom, because my roommate moved out and no one else was going to do it. It's seriously the hardest thing ever being on your own and being chronically ill. I just started seeing someone, and I seriously asked if they will help me take out the trash next time they come over. I live on the 3rd flood. The dumpsters feel like they're a mile away. I can barely make it that far carrying the trash bag on a good day and it's been a bad week. I need help and I don't know how to ask for it or who to ask because who's going to come help me clean up my own mess. How embarrassing is that? It's challenging, doing it on your own for the most part when you're sick. I'm going on 10 years now since the definite onset of my disease. It's taken a toll on me. I know I'm in so much better shape than some other people but some days are just so hard and sometimes I just wish I had someone to truly lean on day in and day out to make this journey easier. I don't feel like I ever had much of an idea of how the whole dating thing worked to begin with. I left high school with a chronic illness and a serious boyfriend that I thought I'd be with forever. And as most high school romances go it didn't last very long into college. I had to learn how to *shudders* meet new people. It's never been my strong suit. I was a cheerleader and a dancer growing up and my mom never understood how I was always in front of a crowd, had a loud mouth, but couldn't talk to someone right in front of me. I've never been much of a social butterfly, I live much more inside my head (or through pen and paper, or text lol). The beautiful thing about that is that I'm in that same boat as most other socially inept people my age and we've all joined the awkward world of online dating. You join and make a profile talking about yourself and your hobbies and try to sound interesting, even though lets be honest we spend about 85% of our time watching Netflix. You expect when you first join to have awkward dates and maybe meet some fun people but in my experience it's a lot of weeding out a lot of seriously creepy guys sending some seriously creepy messages. I've lost complete hope in meeting people this way. And it was kind of my only hope of meeting people outside of my friends trying to set me up with some guy that they met and haven't seen in some obscure amount of time but they swear he's normal and nice. Add onto all of this the added challenge of finding someone who isn't completely scared away the first time they see a snapchat of "chemo night" or "chemo recovery day sucks". Then as if by magic they disappear, never to be heard from again. No one in their 20s wants to deal with someone dealing with serious illness. Someone who has to force themselves out of bed some days. I've started to think lately that maybe it's selfish of me to want to ask someone to try to be with me. I want someone who loves the outdoors, who wants to travel, who thinks of life as an adventure. Only I would be where the adventure would stop. I can't go hiking and be in the sun all day like I want to. I'm not sure my body can handle the kind of travel I want to do. Why should I even look for someone who enjoys the same things in life as me when I may hold them back from ever living their life to the fullest.
Beyond all of this I don't know how to get myself back out there even if I truly wanted to. How do you get back out there when someone else already has your heart? And it just makes you feel foolish, because they don't feel the same way, and it's been over a year now. I should be able to just move on from it but I can't. No one else I try to talk to is good enough. They are boring, or annoying, or crazy, or selfish. I find something wrong with everyone. I know no one is perfect, but no one is him either. I'd rather keep some misguided hope instead but I know it's doing me no good. How do you truly love someone for the first time, have them not feel the same, and just move on and find some other nobody to be with? I was lucky enough to have a 3 day weekend and enjoy the beautiful weather we were having here. I started MTX (methotrexate) back in May, and it's been consistently followed by 2 sick days where I am sore and nauseous. I don't know if I caught a break this weekend, or if the side effects are getting better the longer I'm on it, but I actually went out on Saturday (after taking my medication Friday night). I don't typically go out much on the weekends now because of my meds, which is a huge bummer believe me. It is however a lot better than feeling sick for days at work. When I woke up feeling miraculously not like I wanted to throw up I decided to go to the zoo! It was a gorgeous day. We finally had a few days with little to no humidity for the first time in weeks. It's been a miserable summer. I walked the hills, I saw all the exhibits I wanted to see, and I got what I think are some really good pictures. I was even able to eat! I had pizza and ice cream. I paid for it on Sunday being a little sore (and sunburned, oops) but it was definitely worth it. The only part of the weekend I regret is eating way to much yummy food yesterday, I'm trying to lose weight but it was so good! I kind of dropped off the face of the planet with my blogs, my websites, my everything online lupus related. I have had a very hectic past few years and most of it was spent away from my computer. I've decided I'm finally in a place again where I can be of help to other lupus patients.
My health took a nose dive, both physically and mentally for awhile. I was sick, had no insurance, and then went through what was a very difficult break up for me early last year. I managed to get my body back to a place that I could function after a few months, but I was not myself. On top of my own struggles with my health and relationships, my mom found out she had breast cancer. Then a few short months after that we found out we were getting kicked out of our home. So fast forward a few months, after another break up and other stress like dropping out of college and getting a job at a pharmacy, I had my own apartment. That apartment and those 5 months I was there are an entirely different story that is much too long. Now I am taking care of my brother because no one else would, but he just turned 18 and I helped him get a job. I have an apartment with him, 2 precious kittens, and a job where I feel like I can be productive even though I have to sit while doing it most of the time. It was so very hard for me to step away from what I am truly passionate about, which is helping other lupus patients, especially younger ones, and advocating for us. I could barely focus on myself and my own life this past year or so though. I feel like the past few months my life has finally calmed back down, I have a routine and a stable living situation. I'm doing pretty well all things considered with my health, though my diagnosis has changed to MCTD (I'm still not sure if that's an addition to lupus, or a replacement. Very little definitive data on it.) I switched my main medication from cellcept to a low dose of methotrexate. I seem to already be feeling better on it, but I guess time will tell with that. I'm slowly but surely coming off of my steroids. I'm finally, after YEARS, down to 4mg of Medrol. The most difficult thing for me has been trying to safely lower my steroids without making myself sick. I have not been off of steroids for 5 years now, and I'm only 23. I already have side effects from the long term use. Right now my goal is to get off of it, and be able to lose some of this weight I've put on partly from it. It's very difficult being happy with your body when it is not the one you are used to! Please if you read this know that if you need someone to talk to, I am here. You are not alone. In my short life so far I feel like I've experienced quite a bit and I promise you I will listen and give the best advice I can. We have to be there for each other, even when it seems like no one else is there we as patients are there for one another as a support to fall back on. Some of these pictures are really old. I want to share all of them in one place, because I want to show everyone what a disease like lupus is doing "behind the scenes". No one really can appreciate what an invisible illness does, because...well...its invisible. I do not often have visible signs of disease, and when I do they are often things that are easily hidden, and honestly I prefer them that way. Yes, it's nice sometimes to have an outward sign I'm sick so people take my disease seriously, but I also don't want to look the way I feel most days. So lets begin. Also keep in mind most of these flares and pictures happened when I was medicated, and right now I'm not. Let that sink in as to how crappy I feel right now. Here is what the world sees: I normally look pretty ok, happy, not sick. Here is a picture of my face during a lupus flare: What girl doesn't love looking like a rashy tomato? Here is me during a vasculitis flare: Very unattractive, very painful, very itching. Here is a picture of my Raynauds flaring up: Who doesn't like turning into a smurf, right? Here is a picture or some lovely mouth issues I have been having: These are most likely from Sjogrens, but honestly who knows. Here's a picture of me sporting a heart monitor: Chords all over your boobs is sexy right? Here's a picture of my dysfunctioning lungs: Who doesn't love having scar tissue, even minimally, in your lungs? I may look just fine sometimes, but I have a lot of bad stuff going on in my body. It wears me down, makes me confused, and makes me very sick. Just because it's not always visible on my face, doesn't mean it's not there. Pain and fatigue are some of my biggest problems, and you'll never see them.
I really don't know what to say other than I've felt really lost lately. Health, money, school, family, relationship problems all piling on the past few months. I feel like the world is kind of crumbling around me some days and it's very overwhelming. I'm trying really hard to keep myself together. School will be on break for a month here soon, and I'm hoping that month will be enough time to get some other things straightened out. It's hard to have your life upended over, and over again on a regular basis. That's the reality of someone living with a chronic, incurable illness. I go through cycles with my many illnesses. It's both physically and mentally taxing to deal with getting sick on a regular basis; from feeling "normal" to being immobile. Most college seniors probably do not understand the struggle of getting up; of actually physically trying to push yourself up, and swinging your legs over the edge of the bed to get up. Most people don't have much thought during this process, other than maybe that they're tired and they'd like to sleep longer. I wake up more and more often spending at least a half hour trying to stretch out while laying flat in bed trying to get my muscles and joints mobile enough to get up with as little pain as possible. I stretch out a little more when I sit up. Then there's the quite painful standing up, which usually feels like the weight of the world on my bad hips, knees, ankles, and feet. I walk slowly to the other side of my room and put on my robe, hoping that eventually I will in fact make it into the shower. I slowly make my way up my stairs, which usually sucks most mornings lately. I'm already exhausted at this point. I take some ibuprofen and sit down in my recliner in the living room and put my feet up. I try to wake up more, because I'm still not mentally all there. I scroll through Facebook and try to do some reading for school. This usually ends with me getting really frustrated in my inability to read over and remember my school work, and I give up on it for awhile. If it's a good day and my joints are feeling a little better I'll hop in the shower. The hot water makes my joints feel a little bit better, but standing for so long is exhausting. Washing my hair, which is almost down to my butt, is a serious task for my arms. They are sore and weak and can't stay up long enough so I'm leaning up against the wall all weird trying to give them support while I get some shampoo washed in. The water feels so nice, especially if my Raynauds is acting up (which it usually is, because winter has set in here) but I know all this hot water is going to do terrible things to the dry patches of skin all over my upper arms and shoulders. I do my best with my arthritic hands to turn off the water, and then try not to fall when getting out (tub/shower) because my legs can't lift that high. It's probably anywhere between 12-3pm by this point. I've just gotten myself together for the day. I've missed my meetings, my classes, my routine. Chronic illness doesn't care at all about your routine, about your responsibilities. It lets you get stuff done when it feels like it. Sometimes I get to keep my routine and have my life, but other times I just don't have that option. I can "push through" and "be strong" as much as anyone else, but the reality is that I am physically unable to have the life I choose very often. I can not get around this fact. I can work around it to the best of my ability and find other things that are fulfilling during these times, but I can't just magically not be ill. Right now I'm going through a cycle of my life being upended, of having no routine, and being sick more often than not. I know that it will pass, but right now that is my life. I know and can accept it for the most part, I just wish those around me understood and could accept it as well.
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