Tips for a Successful I.V. treatment

When I was first diagnosed with UC my doctor reccomened the standard pill treatment. I took 3 to 4 horse pills everyday while also taking prednisone to try and get things under control. However as we ended the prednisone treatment the UC symptoms increased again. Obviously we could've kept me on prednisone but for the safety of my family and the world as a whole we decided instead to change medications all together. I started an I.V. medication Remicade and I've been on it since. 

You may have some questions about all this so let me briefly explain how things work. I schedule my I.V. appointment through my Drs office and on the scheduled day I arrive at my local hospital. After checking in and getting my wrist band I go to outpatient short stay. They get me checked in and in a room. A standard room has a little reliner for me to sit in as well as a few chairs for others and all the equipment needed by the nurses to perform my procedure. Then they check my weight (the medications quantity is based off of weight and they mix it up in the hospital pharmacy) and do my vitals. Then the nurse gives me my pre-meds (Tylenol and benadryl) to help with any side-effects from the medication. And they get an I.V. in my hand. Once the medication arrive they hook everything up and I hang out for a few hours while the bag of meds empty. Once that's done they remove the I.V. and send me home. Ta-da! Now that you know the jist of the experience you can better appreciate my 10 tips for an I.V. treatment. 

1. Dress comfy! (And warm) Sounds weird but honestly go in PJs, bring the slippers, and above all don't choose fancy outfits that require lots of clasping and stuff! You are having huge amounts of fluids pumped directly into your blood stream you'll be using the bathroom a lot. Also ask for those warm blankets! They are a godsend and sooooo nice. 

2. Just like with an airplane, download your media entertainment before hand. You will want to watch a movie or read a book or listen to music. However in my experience hospital free WiFi isn't the greatest so download ahead of time to save your data and have better streaming in the moment. 

3. Bring a friend. Before Covid-19 I always asked a friend or family member to drive me. I usually feel pretty sleepy afterwards and it gives me someone to talk to. That's not to say you can't go by yourself and be just fine but it's nice to not be alone. 

4. Be an advocate for yourself!! I cannot stress this enough! If you know which hand you like the I.V. in tell them nurses! If you want apple juice to drink instead of water ask for it. Don't be a "Karen" or anything but speak up for yourself and take care of yourself. Your future self will be grateful for your courage. 

5. Use lidocaine! Lidocaine is the numbing medication that they can put in your hand before the I.V. to help with any pain or discomfort. USE IT!! You will be more comfortable and less anxious if you know its not gonna hurt. And when necessary be a self advocate and ask for it from your nursing staff. 

6. Be okay with napping. Benadryl makes me sleepy but even if it didn't you get bored sitting in a little room. Let yourself rest I.V.s aren't easy and your body needs you to take care of yourself. Don't come into your I.V. with a huge to-do list (unless you can be forgiving if you don't get it done) just allow yourself the time to relax and rest. 

7. Get to know the staff. You will have I.Vs anywhere from every 6 weeks to every 8. Get to know these people, try to remember them and their lives. It makes the experience nicer to feel like you're going to visit some friends instead of being sick at a hospital. 

8. Go easy on yourself after the I.V. don't make plans for that evening. Don't over use your hands and don't be surprised if it takes a few days for you to feel 100% again. Be patient with yourself! 

9. Expect it to not go well sometimes. Sometimes the I.V. isn't gonna go in well. Sometimes the medications will take longer to get from the pharmacy. Sometimes it's gonna hurt more than others. Sometimes you'll get giant bruises. This is all OKAY!!! For every time it doesn't go well there will be 3 times it does. Also be patient as the staff and you get used to things it's gonna take a few visits to find your rhythm. 

10. Find something to be grateful for. Sounds silly and sorta unrelated, but if you can find something to be grateful for you will find joy. There is some much you have been given and remembering that will keep you kind and happy. Life is hard, this might be hard too. But don't give up! 

Things not to say

If I had to guess you or someone you know has a chronic illness, if not just wait this is a literal freaking epidemic! Ok. That was a bit dramatic. Where am I going with this?! Ahh yes that's right.... here is a quick list of things NOT to say to someone who has a chronic illness. 

1. You'll just need to learn to live with it. (Okay sure, why don't I just hire someone to hit you in the head all day with a mallet and you can learn to live with that, huh?)

2. Do you really need that medication? (Listen if I didn't need it I wouldn't take it, 9 times out of 10 the symptoms make me feel terrible but you know, I wanna live....)

3. So you're better now, right? (Listen, and I'll try to make this simple, chronic=forever. You're welcome) 

4. Have you tried..... (If one more person suggests CBD oil, essential oil, some medication they heard about on a commercial or a "cure all diet" I. WILL. CUT. YOU.) 

5. Oh but you're so young. (Yeah the thing is they must have forgotten to I.D me before handing out the illnesses. And yes, I truly appriacte the reminder that I have tons of time to "learn" to deal with these problems)

6. Why are you always tired? (Because my body is always trying to kill itself, sorry if this inconveniences you) 

7. Well you don't look sick. (You're not wrong, I try my best to keep the zombie buried deep inside) 

8. Why can't you do.... (Listen sometimes it's that I can't, sometimes it's a choice of what thing I want to do more. But beleive me I'm trying)

9. You must be so strong to deal with this (I know you mean well, but I don't feel strong, I don't love the idea that because I'm "strong" somehow that makes my struggles okay. Honestly they suck and I'm exhausted and I don't want to be the "strong" one anymore) 

10. But how are you really? (I know you mean well, and this is your way of showing it. But if I say, "I'm fine" there's a reason! *stay tuned for the 10 things "I'm fine actually means") 

11. I understand... (Listen I get it you want to empathise with me, but you don't understand. Okay? You just don't know what this is like and it hurts to be reminded of that)

The thing to remember everytime someone says one of the annoying things to you what they are trying to say is: I care about you. So try to resist the eye rolls ;)

And maybe send them this; a quick list of 5 things that we (well, I) actually like hearing:

1. I like you're Pjs 

2. Oh, I've never heard of [your illness] can you tell me what it is? 

3. Want me to get you your hot pad?

4. Do you want to talk about it or be distracted from it? 

5. Would a hug help?

Honestly compassion (not pity there is a huge difference!) and kindness will always be effective. And when in doubt just listen, more often then not we'll tell you want we need. Hang in there friends! 

Two whole years, can you believe it?

So today I got a very excited Marco Polo from my MTC companion. She was happily wishing me congratulations at our mutual anniversary of coming home from our 18 month mission in Jacksonville. Yup! Two years ago today I was flying home emotionally and physically exhausted after giving my all for 18 months serving the wonderful people of Jacksonville. And "celebrating" being home for two years doesn't really make me feel very happy. Let's do a quick side my side of me and my MTC companion:

Companion: 

Moved out of parents house, happily married, expecting 1st baby, working from home, cute rental house (you get the idea #perfect)

Me:

Lives in parents basement, haven't been on a date since last Dec, working part-time if lucky, sick constantly (but at least that's consistent)

I'm sure from that breif picture you get the idea why I wasn't loving the idea of "celebrating" two years home. I mean I spent the day at the dentist finding out that I might have some autoimmune mouth disorder or something and the evening icing my swollen painfull hand wondering what's up with that new problem. She spent this evening celebrating Halloween with her sweet in-laws. Now please don't misunderstand!! I am so beyond happy for her! She's one of my very best friends and I love that she is so happy and fulfilled and blessed. I know she works hard and faces her fair share of trials. It's just on days like these I start to wonder what on earth God's plan is for me. 

Sometimes it feels like He's up there doing a evil chuckle and having this type of conversation with his angel buddies;

God: So how's Onaleigh doing down there on earth?

Angel: She's doing pretty well after the whole chronic illness bomb we dropped a few months ago. 

God: So she's starting to figure things out, dealing with pain well, you know starting to feel hopeful again?

Angel: Yeah she's really risen to this trial, I think she's gonna be just fine! 

God: Oh great! So now I'm thinking we throw down some problems with her hand, pretty basic just make it hurt randomly and frequently oh! Definitely whenever she's baking or you know using it to do anything that makes her happy.

Angel: Excuse me what now? 

God: No, no trust me on this she's gonna learn a lot and she'll definitely rise to this one too! 

Angel: So like this is it though,  right? I mean she's good now on the whole trials thing, at least for a year or so?

God: Mhm... I mean maybe, but probably not. I'm thinking we go after her teeth next after that I'm sure we'll find some new medical mystery. And then there's always her social life can you imagine trying to get her on a date? I mean come on! Isn't this so fun?! 

*And scene* 

Okay that was sassy and honestly I don't think God gets a kick out of my suffering (most days) but sometimes I just wonder you know? Like maybe a few years or months ago I was at a cross roads and it was like left leads you to marriage, baby and happiness or you choose right and you get health challenges, emotional distress and "a great personality." Obviously the correct choice was left but I went right and now look at this pickle in I'm! Or maybe it's all you know, "This is a good thing, think how much your learning." "This will be a blessing later in life." "Just think it could be much worse." Which honestly doesn't make me feel much better. I just really don't understand why. 

Why is this where I am in life? Literally what is the point to all this? Will it ever end? Does it get better? Do you actually have a plan or are we like rolling dice and guessing as we go? 

Sadly this post, like those questions that will go unfinished because I don't have the answers. (Shocking I know!) I'm trying to trust, which is the literal worst. I'm trying to be patient, which feels almost impossible. I'm really trying to be positive, cause that's what your supposed to do. And mostly I'm just trying to be happy, but it's not always easy. I know eventually I'll figure this whole thing out, probably when I'm 90 (but at this rate who knows if I'll even get there! Haha) and don't worry when I get some answers I'll definitely let you know. Until then, just keep hanging on! 

Flare-up Rules

So you're in a flare up, it sucks obviously, but what do you do now? Here are some hard and fast rules that have helped me! 

1. You can only call out sick from work IF you have diarrhea, are vomiting, or have a fever. They need you to be there, and you can do this!  

2. You have dietary restrictions! Corn will end you! Dairy is a no-no! So JUST SAY NO!

2.5 You must eat food everyday! Your body needs to be fed, find something it will eat! 

3. You must brush you're teeth and put on deodorant EVERYDAY! Changing clothes is optional changing underwear recommend. 

4. You have to get out of bed everyday. No specific requirements on the amount of time spent outside of bed and you can get back in it however often as you need too. 

5. You must see and feel the sun everyday! Through your bedroom window doesn't really count and you know that. Go get some of that D! 

6. Be nice to someone everyday! Kindness counts and will make you feel a little better. 

7. You are not allowed to wallow! Cry about your afflictions for a moment feel  all the sorrow and suffering, and then remember that the sun still shines and tomorrow will be better than today. 

Welcome to my brain, there is no explanation

Been a while since I posted and I feel like all my loyal readers must be devastated without my wit and charm. (Hahaha JK I know no one reads this, that's the point!)
So this is just gonna be an example of some of the thoughts, and how they change, that pop into the head of someone with chronic illness!
#bulletpointlist

•We've all seen the commercials for medications when watching the TV.... you know: "Talk to your doctor about 'xyz'.... see if 'xyz' is right for you today!" And then the list of side effects that often feels longer than the positive part of the medications commercial. Now confession time! I loved making fun of those commercials! I know!! I know... literally why! But the fact is most people have snarky comments in response to those commercials: "Why don't they just come right out and say this might make you better or it could kill you?" Or "those side effects sound so much worse than the problem!" Or my favorite "I would rather be sick than take a medication with those kinds of side effects!" And I was so here for this! I was on this toxic bandwagon! #shameonme The thing is now I'm the sick person who is literally grasping at straws some days looking for anything that might stop the pain or make me healthy again. Literally willing to try just about anything! And yes the medication I take have a huge list of side effects you know things like: fever, headache, chest tightness, heart failure, lupus-like symptoms and you know certain types of cancer! Fun right? But here's the thing! It works well enough that I'm willing to take that chance! And honestly yes you need to be aware of what side effects can come with your medications! It's your body, your health and you have to take charge! But it's heart breaking that "healthy" people feel the need to mock and judge those who are willing to try anything to be healthy! This is truly something you just don't understand until your in that boat.

•Farting in front of your SO. Okay so I'm a huge fan to Queer Eye and I love the #fab5! They are such positive icons for our society and I just adore them! However I was watching an interview where they give advice to those getting excited newly weds out there. And they (minus Karamo) literally went off on how you should never pass gass in front of your spouce. *insert best Jonathan voice* Oh no Honey! My anxiety went from 0 to 60 in a snap! As someone who has a "bathroom disease" and everything that comes with it: diarrhea, bloating, gas, pain and general discomfort, etc. Hearing people talk negatively about completely natural body functions, that for me are often unnatural, as if they are gross or somehow wrong is so so SO toxic! This is literally for everyone not just those with Ulcerative Colitis. I'm talking about how we get grossed out about body hair (yes I choose to always shave my pits but legs not so much), or how we shame women over their menstrual cycle (you have the ability to carry life inside of you so you  rock your cycle honey!), or how we feel like it's somehow wrong or absolutely disgusting to pass gas. But wake up America! These are normal functions of the human body and creating toxic stigmas about those normal functions need to stop! If your not comfortable around your SO to allow your human body to function normally I would encourage you to think about why that is and if it's to maintain your attractiveness or to hide your authentic self for fear of rejection than there is some toxins in your mind and heart and even your relationship and I would encourage you to address these because only on authenticity can you find true healing. (Also just to clarify! I am totally fine with the #fab5 feeling this way, and anyone else for that matter! I still absolutely adore these guys! #nohatehere)

•Finally let's talk about the elephant in the room of so many ill individuals! The cost of pharmaceuticals is ridiculous! Honestly being sick has seriously killed my bank account! Every medication, procedure, treatment, test, doctor visit, literally anything health related cost money! And the sad part is in a sick person's life their income is usually already hurting because of being sick now they have to pay to be well. It's so sad and for some it can really lead to some serious depression and despair for your situation. Now I am going to acknowledge my blessings (or privilege, call it whatever you want) I have decent insurance and my parents are happy to help pay for my co-pay and so a lot of my cost is pretty well covered. But I do see the strain that this causes my parents as they face financial challenges. Let me give you an idea of what I mean in the form of a little story:
I was recently placed on a new medication in the form of a suppository. And it is a very expensive medication thankfully insurance covers a lot of it. But it's still pricey for just a 30 day supply. It was late the other night and I needed to place my suppositpry before I went to bed and I went to put it in and I'm sitting on the toilet and after I place it in my rectum just absolutely rejected it and out it fell into the toilet!! (now thankfully I had already gone to the bathroom and flushed so it was just the bowel and water, but still...) And I stood up and totally freaked! I needed to get that suppository out of the toilet and where it needed to go!!! Under no circumstances was I willing to even entertain the idea of letting this one go and getting another one. So I'm rummaging in desperation looking for something, anything literally anything, to get it out of toilet. I got nothing! Nothing! I've never been more ashamed of my bathroom. So I just went for it. I shoved my bare hand into the toilet and grabbed my suppository right out of the toilet I rinsed it and my hand off quickly and inserted it, thankfully that time it took. And as I'm washing my hands off it dawns on me what I've just done. I willingly shoved my hand into the toilet to get something out of it to put into my body. I had a good laugh and obviously told my mom the whole story immediately following.
The sad part of the story is I justified my actions because of the expense of the medication. And some people face much worse because they are desperate for treatment and the chance to be well, literally just so they can live.

Well we're done now. My mind finally feels quiet. (Maybe it's the Nyquil, I'm writing this while facing some sort of head cold allergy situation #notfun) Hope you enjoyed this peek into my brain! Remember: choose kindness first!

Reaction

So I literally just got home from seeing a new movie, Five Feet Apart (heard of it? Yeah the sappy chick flick about CF... seen it? Well you should! Yes, you'll cry but it'll be so worth it), it was really good and made me cry, a lot, so points. But it also made me want to write this. Here's why:

#1; Awareness! This movie centers on the struggle and lives of 2 individuals who live with CF, Cystic Fibrosis, which is a terminal illness and it's all very sad. This particular movie did an incredible job promoting awareness for CF. The director was a friend of Claire's (if you follow the CF vlog community you know who that is) and she helped and played a role in the movie although she died before it was finished. It was sorta obvious throughout the movie that a huge part of its purpose was awareness. Many people have compared it to The Fault in Our Stars another teen rom-com about sick teenagers who "against all odd fall in love" (which in my opinion is a crap ton of BS but that's another blog) however a key difference was the lack of awareness tFiOS. Yes it's cute and whatever but significantly different. Among the CF community there has been a huge response to five feet apart, both positive and negative. But for the most part the movie did some incredible justice. They really tried to be authentic and show us what CF is really like. That alone was powerful. And for people who live with disease the desire for awareness is huge!!! I mean it's so important to us for people to know and understand what's happening in our lives. In addition to that awareness leads to money that allows for study and that keeps the dream of a cure alive. A real cure. A miracle. Obviously one movie doesn't make you an expert but hopefully it makes you more aware and more open to learning more. Because, speaking for myself alone here, I'd be more than happy to explain my illness to you. I don't know everything but I try to. And if you want to know I'll happily tell you. I honestly think the key to awareness is taking away all the taboos!!! It's okay to not understand something and ask about it. It's okay to be asked. Stop being sensitive. And yeah Google is great but 9/10 each illness is unique to the person so they can really tell you what's up. Anyways... I think yes awareness is the goal. But let's remember to pace ourselves! Just because you know about CF doesn't mean you're aware of UC and you can't know everything about every disease out there but being open and trying makes all the difference.

#2; It felt really relatable. Now let me preface I do not have CF nor do I know anyone personally who does. However as someone who lives with a chronic disease there where just moments that felt so real and relatable to me. Example (no spoilers fear not) expressing fears about relationships. From medical costs to needing extra care to the general uncertainty of being sick. It's hard, so hard and it's a nightmare to imagine bringing another person into that. Or imagining another person being okay with that. Now UC, ulcerative colitis if you don't know, is NOT a terminal illness. However people do die from it, that's usually due to not properly treating it though. More often than not they die of complications it involves, i.e. cancer or ruptured bowels and such. So yeah death is real but not at all like it is for those with CF. That being said the fact that it sort of looms in the corner of your vision is real. And the fact that it take and steals so much from you. That was so real... so real. Any disease, I don't care what, steals something from you; be it freedom, "normal", touch, peace, happiness, breast's, colons, breath you name it... it takes it. And that sucks. And it hurts. So there are moments when you take or steal things back. And I think that's so important.

#3 Obviously the whole premise of five feet apart is that they literally can't be together for fear of the chance of transferring bacteria and well, R.I.P so you can probably guess the ending. My thing is that's a bunch of bull sh*t. Literally Drs know basically nothing (JK they know so much and I'd probably be dead if they didn't). A lot, a painful amount honestly, is still being learned about illnesses, UC and CF alike. And you have to be willing to way your own risks and do your own research and make your own choices. Now am I saying be reckless and who care nobody's getting out of life alive anyways? NO! I am so totally not saying that. However I am saying that we were put on this earth for a reason, each of us has divine purpose here. And one of our personal purposes of living is to have and find Joy. If we can't have that then what's the point. I mean really? Why are we even here if it's just to take our medicine and follow every rule and go through the motions. I call crap on that!!! Find what makes you happy and hold onto it. Why in five feet apart did they literally separate to the point of loosing contact? It doesn't have to be that way. Stay friends, stay close with the boundaries you choose. YOU CHOOSE! Don't give up what brings you true happiness because fact is happiness, joy, true joy is a gift. And if it's the whole point of this than it should be cherished above all else.

Oh you know, just another emotional break down

You can probably guess the content of this post due to the title.... So let's jump right in!

And of course we'll start with a story.
A few weeks ago I got a little cold, it was right after my infusion too. Needless to say I've been in a flare since. I contacted my Dr and he had me do the standard blood and stool tests. Results? Normal, of course. *long sigh*

Thankfully my Dr pulled some strings and got me an appointment with him for this week. #blessed So I drove to my appointment and went to the desk to check in. Turns out somehow the days got mixed up and I'd missed it.

The poor receptionist I'm sure thought I was a crazy person because I didn't hold it together very well. I got another appointment in March! Went to my car and cried my eyes out. I even called my parents and cried at them.

It was a mess!! I also felt kinda stupid. I mean how irrational is it to be crying over a missed appointment. But honestly it was just my breaking point, between the pain and discomfort and lack of sleep I wasn't feeling very stable.

But here's the thing; was it really irrational to express the emotions I was feeling? I'm thinking no. Maybe my belief that someone my Dr was gonna be able to fix everything was irrational. But expressing the emotions you are feeling in a safe and controlled way is good and very healthy.

You need to acknowledge and validate these feelings. It's only right and it's only fair to yourself. But then we act!! We don't just sit there depressed and crying forever. We do something about it. For me I went to the store bought some nature sleep aids, bubble bath, food... things that I can control. That's what we need to focus on especially when things get bad.

So if your in a bad moment, bad day or bad week hang in there. Control what you can. And let the emotions you feel flow through you. It's gonna be alright.

My UC Story

I was diagnosed with ulcerative colitis in March of this year, just following my 21st birthday. But that is not where my story begins....
My story starts like many great fairytales, with an upcoming adventure. I had just turned 19 and made the decision to serve as a full time missionary for the Church of Jesus Christ of Latter day Saints, that meant that for 18 months I would live somewhere away from home serving, teaching and working to help those around me. I was so excited! I had a deep love for those around me and I wanted to share the happiness I had found in following the teachings of Jesus Christ. I received my mission call to Jacksonville Florida and I would go to Utah for 3 weeks to recieve training and preparation at the MTC I was to report there April 13th of 2016.
I was nervous to be leaving home for the first time but I took a deep breath and off I went. It was kinda insane but in a good way. My body didn't react well to the stress, I got sick very quickly being unable to eat and needing to use the bathroom very frequently. Which is more than an inconvenience when you have to bring another person with you, it's a rule for missionaries to stay with a companion 24/7. I was also having some rectal bleeding now I know that should've been a red flag for me but since I had worked as a CNA I knew how to recognize internal bleeding in a BM and that's not what this was. Frankly I thought it was hemroids, they run in my family and I've struggled with bleeding on and off most of my teenage years, always attributing it back to hemroids.
Regardless I was concerned and between my companion and my Branch President in the MTC they had me go to the Dr to try and figure things out. It helped they gave me medications that made it possible to eat and did some blood work. Things looked fine, other than low iron (the bleeding would explain that), they checked for hemroids and surprise I didn't have any! Also a little concerning becuase where was the blood coming from? The Dr wanted to do some stool samples but that would've kept me in Utah and I didn't want to be kept there. I wanted to get to Florida and get to helping people. So I declined and off I went, probably the first if many dumb decisions. (Haha)
Florida was beautiful! My first companion was compassionate and patient. She was a huge blessing. And my health improved slightly. Until suddenly I was sick with fever and chills and the runs all out if no where and unexplainable. Well back to the Dr's I went and this time I did the stool sample, turns out I had gotten Salmonella. Medications helped (sorta) and I was also put on a probiotic to help heal my gut.
The next hurdle came when my grandfather passed away at home. It was hard not to be around to help and my health plummeted. It wasn't made any easier becuase at the time I was training a new Sister Missionary who was struggling with anxiety among other things. I was stretched beyond my limits and so overwhelmed. Once again the bathroom became a close friend and I began to notice bleeding again, I was exhausted constantly, I was hurting and I stopped being able to eat regularly I just sorta nibbled and then forced myself when in public. I sought help but everyone attributed it to stress and irritable bowel syndrome, which also ran in my family. I did get a priesthood blessing where I was promised the ability to eat throughout the remainder of my mission. And that promise was fulfilled! Which was a huge blessing and made things far more manageable.
All things run their course, this was no different, eventually things changed I went to a different city in Florida and was put it a different situation, slightly less stressful. And things actually got quite a bit better. But my health just couldn't behave for long so just over a year in Florida, in March actually, I ended up in the ER and needing emergency surgery due to Appendicitis. That was easily the hardest part of my mission. For a few weeks I was too week and trying to heal so I stayed mostly in bed. I was blessed with caring companions and friends who were wonderfuk caregivers and taught me how to seek help. It was a humbling experience and it very nearly broke me. My health directly following the surgery actually seemed to be perfect and then BAM! Suddenly I was so sick everything came crashing down around me so I once again asked for help and decided to cut sugar and dairy from my diet and it was an answer to pray for over a month my symptoms where in remision and I thought I'd found my answers.
Until once again I was moved to a new area and was asked to train a new Sister Missionary. This sweet sister was my rock as my health both physically and emotionally fell apart around me. She was more patient and understanding than I could've asked for. I even remember talking with her and mentioning that I wondered if I had Crohns or something, I knew nothing about it but I wondered, at this point I was too tired of the hoops it took to get to the Dr and the never ending string of questions with no answers. I only had a few months left I decided to soldier through and deal with it when I got home.
My final month and a half in the mission was my breaking point. There wasn't a day I didn't see blood after a bowel movement, the pain never ceased and I   was totally exhausted. My stress level was once again through the roof between coming home and my health and just struggling with my new and final companion I could go no further. And although it broke my heart I was relieved to be going home. And I was hopefull I could finally find answers, despite my fears of what those might be.
I got home to Wisconsin on Halloween and was too busy to deal with anything at that moment! Both my older siblings got married in rapid succession first November then December. When I finally got to the Dr they did some allergy testing which came back negative and decided to send me to a GI specialist. I met with Dr P. and I wasn't surprised when he simply diagnosed me with IBS. That's what's I'd called it my entire mission. It seemed like a logical diagnosis. We even decided to try a newer treatment for IBS it was an antibiotic treatment that had put many sufferers with IBS into remision.
I started the antibiotic treatment just following a bout with the flu and my health spiralled into nothing the last few weeks of April I was a disaster. I tried to tough it out, downplayed my problems and keep life as close to normal as I could.
March came and so did my 21st birthday and it was the Sunday following that I went in to the ER I couldn't pretend any longer something was wrong and I was terrified. Finally the right questions were asked and they determined to do a CAT scan. My colon lit up light a Christmas tree and the Dr gave the diagnosis of Colitis, however a confirmation was still needed before treatment could start so we got me scheduled for a colonoscopy a week later. That week was hell, no point in sugar coating it. I couldn't eat I had fevers and exhaustion. Emotionally I was broken. My life was held together by my loving parents and a few close friends who repeatedly came to my rescue. The Sunday before my colonoscopy I thought I was going to die, only being slightly melodramatic there. I was so sick at this point I had lost over 20 pounds and saw no end in sight. I tried to go to church and ended up puking in the female bathroom before just going home with a fever to sleep on the couch. My heart was breaking... I was so broken....
They performed the colonoscopy and I was finally diagnosed with ulcerative colitis which is a chronic inflamitory bowl disease. The treatments started and slowly I've begun to heal. Sadly it's been an uphill battle and it's not over yet. And I still fight daily against the anxiety this has created and the pain as we try to find the right medications and truly understand what my bodies doing. Throughout this all I've learned a lot about empathy and compassion both giving and receiving. I've also learned about hope and faith, what they are and what they are not. I've also been so blessed in hundreds of small ways each one reminding me that I am not alone.
The most important thing I've learned is that this isn't "my story" this is simply a chapter in my novel. There is more to who I am than this disease and there will be so much more to my life and my future than this. I am a daughter of God, a true and loving friend, a creater of beautiful food, a lover of good books, a professional napper, a girl with a chronic illness but most of all I am a warrior! UC got nothing on me.

Had a bad day.. :(

Man oh man! Bad days strike out of no where! Life is mostly good, things are always a little stressful but oh well! You deal and find joy anyways. And sure you have "bad moments" in day to day life. Maybe you get the wrong order filled during lunch. Maybe a co-worker calls you out for no good reason. Maybe you date cancels last minute. But those things ultimately don't make you day all out, no good, bad!

So let's talk about bad days.... I'm talking you wake up and your whole body aches. You feel nauseous and can barely eat. You expel far more BM then you expect and your bum hurts for the rest of the day. Then you have a fever and go between hot and cold all day long. Ooh and did I forget to mention you're supposed to work today. And no where is comfortable, not the bed or the couch of even the floor. You just hurt, period.
So you cry and that causes a headache. And you worry about work because they really need you. And you really hate letting people down. But despite your best efforts you call in, and then cry some more. You try to go to Wal-Mart, after all you need a few essentials and yup, you guesses it, you cry at Wal-Mart. And so you spend most of the day napping and crying, kinda pathetic but there's not much else to do frankly. And that is the sum total of this bad day.

So why do bad days happen? And what do we do to deal with them? Well I believe bad days happen for a variety of reasons: (1) we live in a fallen world, and sometimes mortality just stinks, (2) humility is very important in life and sadly  sometimes it takes a bad day to remind you of that, (3) it causes us to remember and rely on Him more, finally (4) it makes every good day all the better and so much more appreciated.
How do you deal with a bad day? Sometimes you just have to wait it out. Know that this too shall pass, your story isn't over yet. And hard as it may seem sometimes bad days are giant pause buttons from our body. So I give you permission to Stop! Rest and take care of yourself. But you do not and never will have permission to give up! Nope never! I promise the sun will come out again soon! And if you open your eyes you will see that He is here, especially when things are hard. So my lovely hang in there. And I pray tomorrow is a good day.