The Days in the Life of a Young Celiac

Yet Another Setback

It has been close to 3 days now since I wrote a post and all for good reason! Just kidding, I kinda forgot and was really into unplugging and just reading this weekend. So that’s what I did. Finished two books and now I’m in that weird spot of, do I buy another book? Do I stop reading for the next 3 months again? Eh, not important.

So that super cool new medication that was supposed to be a breakthrough? Yeah, no. I’m finding out that the worst part about this process is the endless medications they will prescribe me come with SO many side effects, they just choose not to disclose them with me. This is where this is about to get TMI to the max, so if you’re uncomfortable with female menstruation, reproductive organs (i.e. breasts), and other such information, you may not enjoy this post too much.

I started this medication on Wednesday of last week, so by the time I started noticing some weird irregularities in my body, it’s only Saturday. 4 days after this tiny 5mg, 4 times a day, pill is introduced into my system, shit is already hitting the fan. I live in an upstairs apartment building and went down the front steps to check my mail, and I felt this weird soreness in my breasts for the first time. Mind you I am a 32B so I rarely wear a bra when I’m home. Another thing though, I rarely get breast soreness. Even on my period I don’t, and it was the last day of my period so I thought it was a weird delayed hormone thing. Then my period ended and my boobs still friggin’ hurt! Great, I’m probably pregnant. Breast tenderness is like #1 when wondering if you’re pregnant, but I just had my period? I push off the thought of pregnancy for another day, then yesterday (Monday) all those thoughts came rushing back. I thought I had felt the inside of my sweatshirt get wet right where my nipple was pressed against the fabric, so I quickly lift my shirt and squeeze my breast. Panic. Pure freaking panic. I’m halfway running into the bathroom just hoping what just happened wasn’t real and I didn’t want to freak out my boyfriend. I lift my sweatshirt again in the bathroom but squeeze each breast and once again here comes little white dots of milk surrounded in clear liquid oozing out of my nipples. (I told you this was major TMI.) PANIC!!!

I have the best boyfriend cause he calmed me down, reassured me I wasn’t pregnant, and went with me to buy a test just to be sure for myself, my mom, and my doctors. He was right, blatant negative. But the biggest reason I knew he was right was because before we went to get the test, he checked the side effects for my new medication on good ol’ Doctor Google. Almost 3/4 of the symptoms on that long list, I have already been experiencing and it hasn’t even been a week. So now that I know my swollen, painful, and milky boobs are part of this medication that isn’t even doing what it’s supposed to.

I was supposed to have more of an appetite, I don’t even have one. The nausea was supposed to lessen, I threw up for the first time in weeks yesterday. My bowel movements were regular, now it’s downtown to diarrhea lane everytime. I was less irritable and bitchy, that flew out the window. And so many more! I’m pissed honestly. Yes my doctors told me a few of the most common side effects, and normally I don’t really have any, so I didn’t really think about it. But now I can’t understand why even the smallest side effects are not disclosed to the patient who is trying everything to feel better, and Google is more help than they have been in months. I just want to feel better, not like my boobs are going to explode for absolutely no reason. And I just want to say to all those Mom’s out there who have Mastitis or other breast issues, I am so sorry. My Mom had mastitis with my oldest sibling, and talking to her about the pain I am feeling, I couldn’t imagine it 10x worse.

And now I wait for the final call back from my doctor telling me, “Yes! Stop taking that medication!” and hope in a few days my side effects start to go away.

Here’s to always hoping tomorrow is better.

Another day full of battles

I didn’t end up writing yesterday due to not thinking it would be worth a post. Yesterday was one of the better kinds of days where I get little things done here and there. Today though is a complete different story. It is pretty consistent for me to feel the worst as soon as I wake up, and today was the same thing. I always wake up to kiss my boyfriend goodbye as he goes to work and he can almost always tell how exactly it is I’m feeling based on that moment in the morning. I thought maybe after I went to the bathroom, I would feel better especially with the new stomach-emptying medication I started. Wrong. So once again I have a day of nothing but trips to the toilet and my bed to cuddle me all day. Nothing gets more tiring than figuring out exactly how to fill your day when you don’t feel good enough to get up and the 8 inches of snow that has fallen this week is keeping you from doing really anything. These are the days where the stress and guilt really get to me. All I can do is sit there and think, and that turns into hours of scouring the internet for a legitimate online job that pays enough to actually pay my bills. The constant stress of how I’m going to buy groceries, pay utilities, pay rent, cat food, litter, etc. etc. I could go on forever since the whole world relies on flimsy paper to survive. Without a constant income and not working 8 hour days, or even 1 hour days, I never know how exactly we’re going to pay for the things in our life. Then comes the stress of not finding any of these elusive jobs that supposedly make you hundreds of dollars per week or whatever bullshit offer they end up feeding you. So that’s what today ended up being, stress on top of sickness that never goes away.

This post feels like a waste and more-so just complaining than anything useful. But at the end of the day, I guess that is why I created this blog in the first place. So today sucks, and I’m hoping tomorrow will be better. There’s always something positive to look forward to even in the worst days and today, it’s just that I hope tomorrow is better. Not always does it have to be an exact one thing, but always be positive about the bigger picture. In the end everything always works out somehow, even when you truly think it won’t. So if today sucks for you, I’m hoping tomorrow is better for you too.

Maybe a Breakthrough?

Well the dreaded doctors appointment turned out to actually be the best one to date. All due to a medical student. Thankfully someone with fresh eyes and an actual give-a-shit attitude most doctors seem to lack over time was here to consult with me. I asked for my GI referral like I had planned with myself and my therapist. But the problem is, intestinal issues are really hard to test for and pinpoint, especially my overwhelming nausea. Both my doctor and the medical student said that it wouldn’t really be worth it to go see a specialist because they would say the same. From here, we went to the possibility that the nerves in my stomach were overworking and sending more pain receptors than needed, an antidepressant can target the spinal nerve endings for that. I said no. bUt wHY dId yOu dO tHaT? Because with past experience with antidepressants, I hate the shell of a person that I become. I have no emotion and am barely mentally present. No go and not a fan of the symptoms either.

Next we went to a very probable theory that my stomach wasn’t fully emptying. With the symptoms that I had: no appetite, nausea after eating, and not really hungry in general. With all of that said, ya girl gained 1 single pound in like 2 months so that shows everyone who was concerned about my weight! Also the amount of times the doctor and medical student told me they weren’t worried about me, they just want to help my nausea which, again, is really hard to pinpoint. That was such a relief because for once I didn’t feel insane. I felt heard by my medical providers and not once did the medical student even ask about my period or pregnancy assumptions!

I had my therapy appointment scheduled right after my doctors appointment and honestly it went really well. I don’t cry as much as I used to in therapy and when I do, it tends to be pretty rare. Last week I just weeped for an hour. This week I had a lot of breakthroughs and revelations. I’ve told everyone that 2020 is not a year to mess with me and I truly meant it. From all of this isolation and sickness you would expect me to be extremely depressed and in a very dangerous place, but in reality I have grown so much more from being able to reflect on my thoughts.

I see life a lot differently now so pushing out that negativity and loud voice in my head is so much easier now. I’ve finally been able to accept that all of the shitty things I’ve been forced into or had to deal with weren’t my doing. Not all of those things were my fault. I do take accountability for what is my wrongdoing, of course, but 5th grade me is where my identity was concreted in for everyone in school. My school counselor told me the bullying and the name-blaming was MY fault and that I had to apologize to them because “They aren’t going to and it really is your fault all of this happened.” Like what kind of person says that to a 11 year old?? Ever since then, any bad thing that happened or mistreatment from other people, I justified that it was my fault- somehow I had messed it up and I was the one who deserved to be sorry. Since then people have played me like a fiddle, and I have dropped everything for the people who have ever been close to me. I trained myself to wake up to any phone call no matter what the hour was, and I did it. I was there for anyone, no matter the consequence. That empathy is my biggest strength and also my greatest weakness.

But this week I realized I need to treat myself better on all of the fronts. Find some kind of self love, cut the horrific toxicity out of my life like what? 3 years ago? Yeah, something like that, and just focus on finally being able to fully be myself without the eyes of 350 other people on you 8 hours a day, 5 days a week. I’ve finally realized that I can set myself free of those burdens and finally lift the weights off of my conscious.

I know it will say I posted this on February 6th and not February 5th, but it’s late and I took a really refreshing nap today, so I’m proud that I at least got close. Talk to you later tomorrow/today.

February 4th, 2020

I guess I am kind of going to set this up like a diary. I will try and write a post everyday about how it is I’ve been feeling that day and what I may or may not have accomplished. Not everyday will I remember, or even get to it, but I will do my absolute best.

I didn’t sleep very well last night. Went to bed with a headache and just feeling all around sick. I don’t know how else to describe that feeling. I woke up cold from the barely insulated building my boyfriend and I live in, and hoping for a warm boyfriend to cuddle me, I got a boyfriend dead asleep as far away as possible. Went back to sleep to wake up again went to the bathroom and really didn’t feel good. Went back to sleep again to wake up to my boyfriend leaving for work, felt even worse as I rolled around trying to find just one comfortable position to fall back asleep in. Woke up to my work alarm to decide once again I was too sick to even be one bit useful at work. Then I laid in bed and consume content and media on all the addicting platforms. Really meaningless stuff and useless too. I had a Breakfast Essentials cause food in the morning makes me more nauseous. Then I decided today was the day to start this blog. And although the day isn’t over yet, I’m writing this now because I will probably stay in bed, look for online jobs, and try to get a load of laundry done. That’s pushing it though.

Like I said in my first post, every day is a different battle and today is nausea and diarrhea. TMI? Well it’s full honesty here everyone. I’ll spend all day thinking about what I can stomach for dinner, make it, lay in bed and watch stupid TV shows and videos. When I write it out, it really sounds worse than it is.

Well that’s all from me today, but maybe I’ll be back tomorrow with something actually happening in my obviously very enticing life.

Why did I, a 19-year old, start a blog about my experience with Celiacs?

Well, the answer is simple. My boyfriend is sick and tired of hearing about it. Ha-ha right?

But seriously, living with an autoimmune disease like Celiac disease is hard as hell! And yet, there was never a moment in my life where I thought I would be faced with it because I was never allergic to anything. When the words left my Doctor’s mouth, I truly couldn’t believe it. What about the pasta? Cookies? Cake? BROWNIES TOO?? But those were just the tip of the iceberg. They don’t tell you about the microscopic gluten that will sent your butt to toilet town for days upon days with nothing at all you can do to help or stop it. Or about how eating out will be a task in which you would rather cry and eat air then fight with one more server about how your food needs prepared. It’s taking the one thing you have to do to stay alive that you also reaaallly like to do and making it the hardest thing possible, eating food. So I decided to thrash out my anger towards this disease on the internet, hoping maybe there’s an audience out there who can relate.

I have always loved cooking, baking, and enjoying the diversity that lies within food. I have travelled to Belize, Ecuador and the Galapagos, Mexico, and I can tell you for a fact the food experiences that I had in those places just can’t compare to anything else. But do you think they would give a flying fluke about what gluten products are touching non-gluten products? Absolutely not. I ate llama and guinea pig while I was in Ecuador, no way in hell would they care about my autoimmune disease and the precautions I have to take for it. I’ve wanted to travel the world my whole life and now it feels like internationally I don’t have the options I need to not murder the lining of my small intestine. Which was my first very disheartening thought and realization.

Right after my doctor broke the news, I went home, opened all of my cabinets, and just started throwing everything with gluten into a big box. I donated the brand new bag of flour, crackers, more canned soup than I wanted to get rid of, and endless other snacks and ingredients to my local food pantry. Then came dividing up all of the opened goods to my family and coworkers so nothing went to waste. And during all of this I was so defeated already. I was two days in and it felt like everything was going down the drain. But it seemed like nothing could compare to the frustration that was the last 6 months fighting my doctors just to get to this diagnosis. But now here I lay 3 months later in the aftermath.

Right now after 3 months of being entirely gluten free and getting cross contaminated (microscopic gluten) by family on multiple occasions through the holidays, I still haven’t gotten better. I have been incredibly nauseous to a debilitating point since October 2019 and now February 2020 I am still in the same state. Tomorrow I have another doctors appointment that I am absolutely dreading due to fighting my doctors that I was, in fact, not pregnant for the last 6 months. I haven’t worked in months which is not like me. I was raised and have always been a very accountable person (if I can toot my own horn anyway) and now I can barely get out of bed and get anything done even around the house. Each day is a different battle. Some days there’s no way I can get out of bed without throwing up or having an unstoppable feeling that I will throw up. Then other days I have an hour at most where I feel just good enough to do the dishes or a load of laundry. Nothing makes you feel worse than when you don’t feel good enough to do anything and everyone around you is affected by it.

I think the biggest reason I want to start this blog is because I don’t know how to explain to the people around me the exact ways that I am struggling. I rarely ask for help because I hate being a burden or worrying someone for what to me, feels like not that big of a deal- even though I know it is. All of my family and people close to me want to help, but there is nothing to help this autoimmune disease. I have drank gallons upon gallons of water, cup after cup of tea to soothe my stomach, gluten free crackers galore because no food is appetizing, and every other remedy I have ever known to help soothe nausea and vomiting. I’ve tried medications for it too, and nothing helps. I hope maybe there’s something else may be wrong with me in the gastrointestinal region and that will explain why exactly I am still sick in bed. But to all of those around me who are frustrated with me and wonder what you can do to help- first, I’m sorry. Second, just talk to me. Treat me like the person I was before I got sick. I know I am at home isolated from the world, but I would love an actually genuine text or phone call seeing how I am doing, not physically but mentally, personally. Have real conversations with me, be honest and straight no matter if it might hurt my feelings. Just include me in your life like you normally would. I’ll do my best to be there in person as much as I can. And third, please please please be patient with me. I am doing my best. Truly I am doing everything I can to get back to normal. Finally though, I am okay. Everything else about me right now is okay, just not the nausea. After vomiting a lot the last few months, that has finally subsided with the gluten free diet. I am eating and making sure I am healthy so I do not want the over-concern or worry because it stresses me out! I can’t get better with all that worry.

So that’s my why. All of these struggles and frustrations that started over a year ago with joint pain has led up to a point where I honestly still don’t know what’s going on with me. But all my life I have been dealt some pretty crappy cards and each time I’ve won the round. My life is rich with the blessings I have put so carefully in my life. 2020 has already been really rough for everyone, but it is the year that life will finally deal the good cards. We are all in control of the things that happen in our life. Believe it or not, you are the God of your own reality. I believe that the only one that is in control of what happens to you, is you. I’m ready to take control of my own reality, and I think the world is too.