Colorful Ciss

Hi there, So, its that season again. Cold and flu season. Yay. Sneezing, snot filled humans around every corner. Ironically this time of year is when everyone seems to be more "huggy" more "touchy" which may be part of the reason germs spread so much. Spread of germs means virtually every single being of human form is, was, or will be sick. Every year during this time I get sick. It is inevitable. However, I consider myself blessed, being that I get one cold and I am done for the rest of the year. This year I was a bit unsure of how that would go being that I am on Remicade which compromises my immune system. Some people get sick easier on this medicine. I have been fortunate to find that this is not the case with me. I do take extra precautions, like washing my hands more often, using hand sanitizer, etc. It seems to be working, and Ryan is good about reminding me to sanitize when we have been out and about. Alright, where am I going with this? Well, guess who got ...

Hi there, Wow it has been quite a year! 2015 has brought lots of ups and lots of downs. I know, everyone says that. But this year has definitely brought me many answers, and has helped me into next stages of my life. It has definitely been a life changing year! There are two events this year that stand out the very most, and they are what have made my year so amazing.  The beginning of this year I finally got answers to all of the pain I had been living with. I got a diagnosis, a name for what I had. That has forever changed me. I was able to take the next step in my life and find a way to manage my disease. This year I feel that I was given my life back. I began chemo (never thought I would say that) and I have been able to have the confidence that I can live my life relatively normal. I am able to not have to worry about getting myself to the bathroom in the morning, I don't have to worry about whether I can make it through my work shift. I have be...

Hi there, Well, here we are, rolling into the last month of the year. December. In just a few short weeks we will all have to learn how to write the year again. For me, it seems to be the busiest month of the year. My fiancé, Ryan, and I have our dating anniversary coming up this week, meeting with the pastor who is marrying us next week, a resting week, Christmases the week after (no, I did not add too many letters to Christmas, we actually have multiple events coming up), and then Ryan's birthday the week after that. Thankfully, even though it is crazy busy, I really enjoy it. It's not stressful busy, it's fun busy.  With all the craziness though, I find that I have to remind myself to take a break. I get caught up, thinking I can do everything, not wanting to miss out on too much. But there lies my mistake. By doing too much at once, I will in fact miss out on more. So, to those of you who don't know what I mean, it's like this: Say I worked a morning shif...

Hi there, Recently, this world has lost two amazing people. Both of whom were battling their own forms of disease. It really hit me hard to not only know these two, but to watch their battles and realize that I myself am diagnosed with my own disease. Disease comes with complications. We all know that. It's scary and true. We live day to day, putting that reality aside and try to survive as a normal person. Then there comes a day where some of us no longer can put it aside, and complications arise, and battles are lost. One of the purposes of this blog is to share people's stories. I would like to share the story of the first friend I lost since I was diagnosed. Scott was one of the happiest people I knew. No matter what happened he always found a way to smile. I had the pleasure of working along side of him in my first ever job. We both worked at a local restaurant, I as a host, and he was a bus boy. The hosts and bus boys had each others backs. Not too long after I ...

Hi there, So, if any of you are like me, you cannot walk into a doctors office without being stabbed with a needle. Weather it be for labs or for infusions or whatever else, the instant I decide to walk into a doctors office I can fully know that I will in fact have a needle put in me. I have come to prepare myself and always bring a snack bar. (I don't do well with needles and have found that eating something after being poked calms me down and prevents me from passing out.) I find it funny how it is the solution to everything for me nowadays. Oh you are having nose bleeds? Blood work. Oh you have a cold? Blood work. Oh you are feeling fine? Blood work. I mean half of my reason I go to a doctors office is to have a needle put in. Every six weeks I voluntarily go to a doctors office to get my regular labs, and every eight weeks I am walking into the infusion lab to get an IV with meds.  Now I completely understand why I always have needles in me whe...

Hi there, So, I have come to realize that I am fighting a loosing battle. No I'm not talking about with my disease (that's a whole other story). I'm talking about my infusions themselves.  Okay, okay, so not the entire infusion is a lost battle but let me take you on a little trip that happens to be my infusions.   First things first, this is an IV, well part of it anyway.  This is what gets to be my little buddy, my pal, my BFEEW (for those who are not familiar, that means "best friend every eight weeks"). There are two bags with tubes that are run through the box shaped machine and are combined into one tube that is attached to my vein. That box-shaped machine beeps extremely obnoxiously in my ear every 15 minutes to remind my nurse to check my vitals. One of the bags is my lovely life-in-a-bag, my Remicade. And the other is the saline.  And this, my friends, is where my loosing battle is. One fourth Benadryl, that makes me sleepy, one fourth t...

Hi there,  Wow! So this week has been interesting. I got sick for the first time since treatment. Honestly, I'm surprised that I haven't been sick more often, due to remicade compromising my immune system and all. But it's like weird sick. Not sure if it's just because my body has so much going on, or if it's because I haven't been this kind of sick in a long time, but it feels weird.  I had a sore throat that was only my upper throat and a bit of a stuffy nose. Honestly, I sounded like a man (and for a few minutes I was able to perfectly impersonate Batman). But that was it. Nothing more than that. But it was getting worse. And yesterday I woke up and it was hard to breathe and swallow, so off to the doctors I went. Anybody want to guess what they ordered while I was there? If you guessed lab work, you would be correct! More blood work... Of course. I mean, how else would they be able to be thorough if it weren't for sticking me with a needle every ...

Hi there,  It has been quite a while since my last post! I have been busy with being engaged, volunteering, and of course, work. I honestly didn't realize how long it had been! Recently, it has been raining where I live. Mind you I live in an area that does not rain often at all. There's this saying that "when it rains it pours," which is so true! In a matter of minutes, we watched a river form in my fiancé's backyard. This is the first time it had heavily rained since I had been diagnosed.  I finally realized what it was like to have my bones predict the weather. The sky was clear with a few lone clouds lingering over the mountains. And I texted to my fiancé while I waited for my shift at work and told him, "it may rain today, my bones say so." Honestly, I wasn't sure if I was kidding or if I actually thought that it would rain. But, what I did know is my body was sore. Then, my fiancé texted me back saying "Ok. You sound like an ol...

Hi there, I recently have gotten engaged and am extremely ecstatic. We have taken care of planning out our necessities for our marriage, and have moved into the beginning stages of wedding brainstorming. However, as I am starting to think about the wedding day and what I want, I realize that I have an extra worry for my big day. All I hear is that it is to be "my day." But what happens if I can't walk down the isle? What if I have so much pain that I can't enjoy the day for myself? The process of planning such a significant day is worrisome enough as it is. But, to add in having to consider that my body may not be able to do such a simple task as to function the way it should, that is a whole other worry.  I feel a little more confident that my day will go smoothly because of the treatment I am receiving. But there is still that worry. That little nagging voice telling me to be careful or I may blow it for myself. And I don't know if...

Hi there, Everyone says that life is unpredictable. But really, life is crazy. No, no, life is insane. No. Life is an absolute mental, psycho maniac, with a side of nuts. One minute it's happy and fun and going right and in an instant it throws you into a bad cycle of unfortunate events.  For me, it has been literally one bad thing after another occurring for over a year. From a traumatic event, to people going through surgeries, to life long diseases, to car issues. And I know that we are supposed to look at the "bright side." We are supposed focus on the good. But you know what, sometimes that just isn't what I want to do. Sometimes, I just want to be upset about my situation. I want to be mad about what is going on. I want to have a "woe is me" moment. Anybody else?   Now, as I have mentioned in other posts, I work in a restaurant. Unfortunately, that happens to be a high stress environment as it is. But I'm sure everyone who has ever had a job ca...

Hi there, I would like to take a moment and step aside to address not only those who take care of us, but are just in our lives in general. I know it's tough for us to express to you what we need and want and that can make it frustrating on your end. There are a few things that we want you to know, and understand, but not always want to say. First off, we love you and appreciate you. We are so thankful for you still being by our side even when we don't say so. We love everything you do. Thanks for understanding when we literally don't feel like going out, not because its not interesting to us, but we are mentally and physically drained. Thanks for being our friends, and our care givers. I know that sometimes that we don't tell you thank you. Don't take it to heart when we don't.  Sometimes, we just don't know how to thank you enough.  Yes, sometimes we annoy ourselves. We know we are using the same reasons over and ...

Hi there, I just wanted to drop a little update on how my treatment is going.  I have made it through my induction phase of Remicade and am glad to report that all is going well with it. Pain wise, I am feeling relief most days. It is easy to get up out of bed and walk myself to the bathroom. I feel as though I don't have to plan my day around my pain. I can enjoy myself when I am out with friends, rather than wondering if my next step will end the fun. I am able to relax a little more, which is nice.  I do still have bad days, which seem to bring me down emotionally. Thankfully, I have people around me who support me and allow me to get upset and cry if I need to. If there is one thing I have learned, it is that having someone with you in this is the greatest blessing you can have. Although you may still feel alone, that person (or people) can hold you and let you cry or distract you and make you laugh. They may not fully understand what you feel, b...

Hi there, Although I am nervous about this, I want to share my story. What I have, how I got diagnosed, etcetera. It has been difficult for me to figure it out myself, and I find it even harder to put it into words. But, here goes nothing... I am a 20 year old woman who has something called Undifferentiated Spondyloarthropathy (Yeah try saying that one five times fast). It is an autoimmune disease that, in my case, means my immune system is looking at my good tissues in my body, thinking they are bad foreign substances, and attacking them. It usually starts with severe back pain, specifically in the Sacroiliac joint (the part of the back where the spine and hips meet) and then moves on to other parts of the back as well as other organs. Often times, if the immune system attacks joints, bones will calcify, or grow, and sometimes fuse together. Spondylitis is three times more likely in men than it is in woman, but is first discovered in young adults. Like all ...

Hi there, As I come up on another treatment of Remicade, I realize how much I had searched the web for any kind of video or blog describing how everyone's experience with this treatment went for the first treatment, what they bring, how it goes, how they feel after, etc. So, I decided that maybe, now that I have had my first treatment, I should share my experience of how treatment 1 and week 0 went.  The day before my Remicade treatment   I was a bundle of nerves. I was excited because this may actually help me. Nervous that it wouldn't or that I would react weird to it. Scared about getting poked by a needle. I was second guessing myself and my decision. What if I didn't need this treatment? But I was lucky enough to have someone who supported me by my side. That was definitely something I needed. We both made sure we had everything for the day and made lists of what we should each remember the next day. We also decided to call it a night ea...

Hi there, I have been considering what I wanted my first post to be for some time now. I had gotten as far as wanting to begin and then not sure from there. What do I say first? Where do I start? What would people want to read? I have come to the conclusion to start from the beginning. Usually a good place to start. I don't want to give you my whole story, not yet. I am still working on figuring that out myself. So for now, how about the story of why this blog exists, some goals I have in store for the future, etc.  It began one dark and stormy night.... Just kidding! The idea did make its presence during the night, however, I don't remember the weather. I had been toying with the idea of starting a blog for quite a while, honestly for something to do. But I could not figure out where to start idea wise. What did I wish to write about? Thus, I never had any motivation to pursue this blog idea. It wasn't until I got diagnosed with an autoimmune disease, or as my doc...