Well, consider the tea spilt. I can no longer hide it anymore, I have an autoimmune disease. Two to be exact. I know what you’re thinking: How’d this happen? When did this happen? Are you ok?! Oh my gosh..she’s so melodramatic. Oh yeah definitely dramatic. It’s time to share because the first step in acceptance is sharing/telling or at least that what the ER doctor said. It’s time to accept the fact that I have these conditions and to make sure people are aware.
How’d this happen? Ya know I often ask myself the same question. It officially started the year I graduated high school. 17, and ready to take on the world, I started my first semester of college in California. But much to my chagrin it was nothing I’d hoped for. About half way through my semester I started gaining some weird cramping pains along my abdomen. I never liked the cafeteria food so I chose not to eat there as often. I started gaining some other side effects such as weight gain, migraines, hormonal imbalances and more cramping. I came home from college and within my first week of being back everything went back to normal. No more cramping or migraines, my hormones balanced themselves back out and I’d gone back to my normal weight. After some doctors visits, we came to the conclusion that all the health issues at college could only be side effects of hormonal injected food served in the cafeteria. Amongst other reasons, I did not return to California and stayed out in Arizona to keep an eye out on my health.
Everything seemed great for a while, none of my symptoms had come back in full force and I couldn’t have been happier. However, around the month of June I started experiencing my cramping pains again. I didn’t say much at first. The cramping would come off and on, and it was bearable. Until the day my pain came with bleeding that is. I freaked out a little, but it stopped. Since I had worked up my pain tolerance to be fairly high, I still didn’t say anything to my family. This continued until September of 2017, when I had my first round of pain that I couldn’t handle anymore. My mom found me in my bathroom sobbing in the fetal position cause the cramping was so bad. We then rushed to the ER where they had no idea what was causing the pain. They gave me rounds of pain medicine and did ultrasounds to see what it could possibly be. They came to the conclusion that my appendix was 50% inflamed and I had bursting cysts on my ovaries. They gave me some antibiotics and pain killers and sent me home. We thought that was the end of it, until two weeks later I found myself back in the ER with the same pain. Pain and no answers. I’d never been more frustrated in my life. I couldn’t eat without substantial pain which caused me to lose too much weight, and the doctors were as dumbfounded as me. I finally got used to waking up with a level 8 pain and working through my day. I didn’t want to make people worry over me, so I’d be as upbeat as possible and would literally crash as soon as I got home because my body was running on nothing.
What kinda of pain are we talking about? Well, let’s discuss. Average day, I typically wake up with pain along the sides of my abdomen. Nothing super painful, just feels like a strained muscle. For me, it’s about a level three. I have gotten used to it though, so I don't really register it anymore. Bad day...the pain increases to about a six within the hour, this comes with my whole abdomen cramping and the sensation of tearing around the belly button area. Really bad day, within 20 minutes my whole middle is cramping and contracting my back muscles are now being used to help bear some of the pain and I can not lay down, sitting or the fetal position are the only options. Typically I’ll start bleeding at this point too and my middle literally feels like it’s being torn apart. This is about a 8 or 9 pain level for me and the only solution is going to the ER. 10 pain level? One time my legs went numb?…and I’m sure I haven’t experienced the worse so I’ll save the 10.
In January of 2018, I finally got in with a GI doctor and had some extensive testing done. Yayyyyy… That was when we discovered I have ulcerative colitis. Finally some answers. They told me it’s semi treatable but I’d be on maintenance medication for the rest of my life. Score, as long as the pain goes down. But I had a lot of various side effects such as my iron levels. The average person has about a 75 count in iron, but due to my extreme blood loss, mine was at a 5. I know crazy. Technically could’ve been hospitalized. All my nutrition levels were off too since I wasn’t eating and the imbalances were accumulating. After some heavy steroids and the start up of my maintenance medication, I finally started feeling somewhat human again.
Then August rolled around, and I started feeling some dull pains again. I went back to my doctor and they added an additional steroid to my maintenance medication to help. It helped for a little, until it started messing with my heart rate. I would be sitting in a meeting and my heart rate would spike to about 185-195bpm and I would get massive adrenaline rushes. I immediately took myself off of that medication, and just dealt with the dull pain, because, well, I kinda like my heart.
December came and I still dealt with the dull pain that was evermore slightly increasing. I started going to a doctor that had a more holistic approach to see if it would help. While there, I was able to discover some dietary restrictions and stress relief help. We discovered that I had a pretty significant allergy to peanuts (they literally could’ve given me an epipen) and a moderate allergy to dairy. Then we discovered the round two. I got my blood drawn to see if I had the two genetic tracers for another autoimmune disease. Highly unlikely to get, and even more unlikely to test positive for both genetic tracers. Then bam!, the results came back and your girl tested positive for both genetic tracers for Celiac Disease.
I remember driving home that day actually in tears thinking how could a twenty year old have so much messed up? One autoimmune fine, but two? You’ve got to be joking. I felt so defeated and just at a loss. Nobody wants to watch every little thing they eat. Nobody wants to deal with 24/7 pain. So I dealt with it just how I normally do, acknowledge it’s existence, but didn’t give it much attention. I know, I’m sooo smart.
Fast forward to a couple weeks ago, I’ve had some testing done on my hormone levels to see if they could regulate them and if it was inadvertently affecting my colitis. To which we have not had any major results. I ended up catching a cold last week and noticed that my pain was increasing Saturday night. Sunday morning came and I was down for the count. Back at stage one and I had almost forgotten what it felt like to be in that much pain. Praise God for my Mom who knew exactly what to do and took me to the ER. Some morphine for pain, and zofran for nausea, and my pain levels decreased slowly. CAT scan showed the significance of my flare up and the ER doctor was convinced I needed to spend the night at the hospital. He reluctantly gave me the option to go home solely if my Mom watched me and if I took my steroid medication.
So that brings us to now now. If you stuck with me for this long you’re a real trooper.
Life is going to be different and part of me accepting what is, is being honest not only with myself but with others. I’ll be going to a new doctor to try to find a new medication with hopes of my condition going into remission. My diet will be different in that I will be gluten free, dairy free, and peanut free (and for those of you who seem to care more than me, alcohol free). I’ll be scaling back my sugar and coffee intake as well.
I know some light bulbs have come on and you’re probably thinking, "what in the world, Ashley?". Some of you probably want to help, or some of you are thinking "she's so melodramatic", or are thinking, "that explains a lot". One thing that I absolutely want to make clear is that I’m not writing this to be dramatic or for people to feel sorry for me. In fact, that’s the exact reason why I never mention anything. I’m saying this because I am almost for certain there’s someone else going through the same thing. It’s scary to think that you may be the only person dealing with this, but trust me you’re not alone.
For everyone else, most people tell me “hey you’d never know that you’re had these conditions.” And while I am proud of that, I can’t help but think that 20% of the US population (1 in every 5 people) suffer from some type of autoimmune disease. 50 million Americans, that you probably see hard at work, laughing with friends, eating with their family just trying to figure out what their new normal is. There are even days that are just bad, and we don’t really have a reason besides that our body is literally fighting itself. So next time maybe John at the office may not be mad at you, maybe he’s having a rough morning and can’t figure out why he’s got pain that morning. Does this excuse bad behavior? No never! But people, PERSPECTIVE!
For now, I’ll try new medications, seek out answers, and watch what I eat. Turns out finding your new “normal” is actually a little difficult. Lol. But I do feel like it’s time for me to stop “hiding” and start living aware. Am I scared? Sure who wouldn’t. Am I ok? You bet. And no Jannette, Im not dying, so chill.
Life goes on and sometimes we get thrown some curveballs or get new rules. God has a plan. My favorite verse as a kid and until now has been Philippians 4:13 “I can do all things through him who strengthens me.” I don’t know what the future holds, or if we’ll get any answers but I know that the God who holds the stars and knows them by name, cares for me, even though I don’t deserve it. That no matter the future, it’s Him who strengthens me. And sorry but I also have every intention of sticking around and annoying you all for as long as possible. ;)
If you have any tips and tricks or are in a similar situation, feel free to hit me up in the DMs or leave a comment below! I’m also looking for some awesome recipes that fit in my restrictions so let the recipes fly!
I’m kinda a fan of you all! Ashley