I brought Lupus to my campus today. I wanted to do this last year and it didn't work out. I set up my little table and had all my information ready to go. I was a little discouraged that I wasn't getting many people over to my table when I first set up my table. I was so happy when people would slow down when they read my sign and stopped to ask what it was. So many conversations today started with "I've heard of Lupus but I don't know what it is". Then there were those who came up and had family or friends who were diagnosed with lupus, or suspected they had it. I did my best to describe it to them because this was effecting someone they loved and cared about. It's really hard to explain lupus in all of its complexity in just a few minutes, but I think I did a pretty good job! One girl really broke my heart. She ran up excited to see my table. The first thing I asked was if she knew someone with lupus. She said her sister died last year. She went on to tell me she's going to be doing a Walk to End Lupus in the coming weeks and she really wanted to get more involved. We took a picture together (I was wearing my lupus gear) and sent it to her mom. Being able to explain lupus better to her and give her avenues to get even more information was really great for me. Her sister unfortunately fell into the group of people I'm fighting hardest for to be visible. She was diagnosed at 8 years old and died when she was 20. Stories like that break my heart more than anything. She said she'd love to try to start something on campus and I gave her my contact information. I really hope we can bring more lupus awareness to others on campus!
In 3 weeks I will be celebrating my birthday. I'll be 22 which is not nearly as exciting as turning 21 but I expect to have fun nonetheless. Right before my 16th birthday was when I got my referral to see my first Rheumatologist at Children's Hospital. It's crazy to think that the ball started rolling this time 6 years ago for my lupus journey. I thought that in honor of officially making it a year longer than the 5 year outdated life expectancy for lupus patients I would post a slideshow of my birthday pictures the last 6 years :) Never stop celebrating birthdays! When you're sick all the time it's a great reminder to make the most of life in my opinion. I've been really down and out lately. I feel like I don't have much going for me. I try to keep the whole positive thing going all the time but it's been very challenging lately. I try not to dwell on the things that are upsetting me but dwelling on bad things is something I'm really good at unfortunately. I often feel like I don't particularly "fit in" well (nothing to do with lupus) because in many aspects of my life I'm kind of the odd one out. Lately I've realized my friend count is dwindling and I have very few people I can turn to. People I thought of as friends are anything but and I just need to cut them out of my life. It's hard realizing that you can't trust people that you thought were friends. I guess it's just a part of life. So today was spent vegged out in my pjs watching Disney movies and laying down. So if you're having a bad day you should probably just watch Despicable Me or something, because Minions rule. I'm ultimately a kid at heart and life is best when I remember that and throw my adult issues to the side for a bit. Need something to cheer you up because you're having a bad day too? Here I have lots of cute pictures to help make your day much better! Enjoy. I'm fairly certain that anyone can relate to what I'm about to say: stress makes me sick! Whether you're otherwise healthy or have a chronic illness, stress wears you down and makes you feel bad. I've had a lot of stressful things happen this year, especially the past few months. First let me point out that after this school year I'm apart of the "real world" and the looming threat of not being able to handle it is hanging over all the other stressors I'm about to talk about. My family is going through a hard time. I live at home with my mom because I live pretty close to my college and it saves me money, on top of the added bonus of having people to help me when I'm feeling bad. At the beginning of this year my mom and her husband separated. I love my mom more than anything, so seeing her dealing with everything has been hard at times. Add in having two teenage brothers who are, well, teenage boys and our house can be really crazy sometimes! My adorable 8 year old brother has been thrown in the mix and I know what he's going through because I dealt with it when I was his age. What I'm trying to say is, my home has been stressful this year. Things are starting to settle down though. Tied into this divorce is financial unpleasantness. There isn't a lot of income in our house. I took on a summer job with two crazy little kids that proved to be WAY too much for my body to handle. So halfway through the summer I gave up that job. The money made is all I have right now, because my schools financial aid department is taking a really long time processing my information (because of the divorce). Well who needs an extra $700-1000 right away when they just live at home right? Me, because in the mix of all these other things my cars transmission decided to die. That sounds like a ton of fun doesn't it? If you thought that there couldn't be anymore annoyances in my life right now you were wrong. I'm also about to lose my insurance. I don't work, and my mom is trying to find a job. Once the divorce is final I'll have nothing to cover my medications. I've been trying to apply for insurance, but of course the website for that hasn't been working in 4 days. The thought of not being able to see my doctor if I need to, or afford my meds is really frightening. Through all of this I've come to one conclusion: Being an adult is highly overrated lol I do not have the strength and energy to deal with anymore at the moment. I haven't dealt with unpaid medical bills yet because I just want to throw everything under the rug and pretend it's not there until I get the bigger problems of money, car, tuition, and insurance figured out. But in the midst of all these things that are stressing me out (and making me flare up) I've found out I get to be a part of PARTNERS (Patients, Advocates and Rheumatology Teams Network for Research and Service) which will allow me to be a voice for patients in research. I'm more than thrilled to be able to do this. I get to help give a voice to families living with pediatric rheumatic disease, including childhood lupus. The sun is my enemy. I put on sunblock before our lab today, and I still came in looking like a tomato. I'm guessing the fact I'm already flaring a little bit didn't help any. It seems like every year I become more photosensitive and it really sucks. I like being outside! I swear lights are starting to effect me now too when I'm in class. One day I will find a better sunblock to use. I do love Aveeno, but it's so expensive I can't really afford to get it when I'm not working. Summer is thankfully almost over, so sun exposure won't be a problem for much longer. Winter brings about a whole new set of problems though. I've been sick a good chunk of my life so I guess my first blog should be about that.
I have always had what was thought of as minor health issues. I always had aches and pains and they were always thought to be “growing pains” or something along those lines. At about 13 I started to notice a change in my toes. They started to feel numb and I could see that they looked drained of color. It was a little uncomfortable but I tried to ignore it. After awhile though they started turning purple and would be so cold. I would walk around on my “tippy toes” trying to get feeling back in them. I didn’t know what was going on and it seemed to be getting worse so I went to see my pediatrician who told me I had Raynaud’s and that I just needed to keep myself warm and that would make it better. I started to dress in warm clothing all the time and it wasn’t getting better. It started to creep into my fingers and after many months it was so bad I went back to my doctor to ask if there was anything else I could do. He noticed what I thought were “weird holes” on the tips of my fingers and said he wanted me to see a Rheumatologist at Children’s Hospital. I wasn’t really that concerned because I had no idea that there were diseases associated with Raynaud’s. I had to wait months for my appointment and the closer it got I decided to look on the internet and found that there were many diseases that were associated with Raynaud’s and I started to get scared. I came home from school one day and told my mom what I had found out online and we both said that many of these diseases had symptoms that I had for years but didn’t realize they could be symptoms of any disease. I actually said to my mom the day before my appointment “mom I don’t want it to be lupus. That sounds like a bad one.” And as strange as this may be my mom got a call from the Lupus Foundation asking if we had any clothes they could pick up. She said that it must have just been one of those weird signs that life sends us sometimes. A month after my first Rheumatologist appointment I called to get the blood results and I knew that there must have been something when they said well we shouldn’t really talk about this over the phone your doctor wants to see you. So they got me in within days to come in. They told me that I had a lot of abnormal test results and that they thought I had lupus. I didn’t know what to think, I had read horror stories online before even going in. Organ failure, short life span, death. I had just turned 16. My doctor started talking about how I shouldn’t get pregnant and if I did I would have to plan for it. I was only 16. I felt so overwhelmed. Based on all the things I told her were going on she sent me for more tests, including a chest x-ray. The memory I have of that day that stands out the most, is trying not to cry while texting my boyfriend of the time about how I might not be able to have kids while sitting in a waiting room at the hospital. Of everything she said that was the most devastating. I have 6 brothers and sisters, and always imagined the same big family for myself. She put me on Norvasc and Plaquenil and told me to start taking a baby aspirin every day. I was the type of person who usually didn’t take a pill for a headache, and suddenly I was taking 5 every day. I was told to make an appointment for a few months away unless anything happened between then and my next appointment. Well all the sudden I started swelling and actually having pain in my joints, especially in my hands. She put me on Prednisone. I felt like other than being really tired with occasional pain I had been mostly fine and suddenly I was falling apart within a matter of 6-8 months. I couldn’t go to the pool that summer, and when I did I couldn’t stay in the pool because no matter how nice it felt to everyone else, it was always too cold for my fingers and toes. I was up and down for awhile and then seemingly out of nowhere I started getting really sick at the end of my senior year. I kept complaining about how badly my feet hurt. They were so swollen I could barely wear any of my shoes, and none of them were comfortable. I went in to see my doctor and had several blood tests run over the course of a few weeks. She had started me on Prednisone again, 30mg. She told me to come back in a week and we would see how I was doing. I was just getting worse and was getting no relief. She accused me of not taking the Prednisone ( I had not taken my medications in the past) and I was so upset and with my moms support convinced her I had been taking the medicine. They realized I wasn’t metabolizing the Prednisone and had to switch me to Medrol. By this time I had gotten pretty sick. The vasculitis in my legs had made it almost impossible to walk. I was miserable. They had me on a high dose of oral steroids and then it was decided I needed a three day round of IV steroids to try to get things under control. I had a really bad reaction though; every possible side effect hit me. I was almost more miserable then than I had been previously. They kept saying my blood work was looking better, but I didn’t feel better at all. It took weeks to get to the point that I could walk again and make it too school. I feel like I missed out on so much of the end of my senior year and it is filled with bad memories, not happy ones. I have been diagnosed with Lupus, Vasculitis, Myositis, GERD, Interstial Lung Disease, Raynauds, Sjogrens, and fibromyalgia. I am 21 years old now and I'm in my last year of college. It has been a very difficult journey, but I have come through it. I want others to know that no matter what happens there is always a way to over come the obstacles life often throws at us. |
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