Today's post is focusing more on what was really happening within me. I'm not sharing this part-or even any part of my story-so people can feel sorry for me and what I had to go through. Although it has been a very tough few years, I have learned and grown more than I ever thought imaginable and I can see the positive outcomes. I am writing this story to show how poorly the American healthcare system took care of me when I needed it most and I want others that feel like they've been abandoned by the system to know they are not alone and that there is hope and answers out there for everyone. So I ask that you please take this as more of a PSA, that you never know what people are going through and to be kind to everyone-no, you don't have to love or even like everyone, but you can be kind.
It was now 2.5 years into dealing with these difficult health issues, and still no one had any answers for me. I was getting desperate an was willing to try just about anything to make the pain stop, yet this wasn't the lowest point I would hit.
By now, both mentally and physically I was a mess. My body had been through so much in the past two years, and everyday was an obstacle that I had to get through. Here's an idea of what my days looked like around that time:
i planned to put a few pictures in this post to break it up, but took a total of 5 pictures from fall 2014-spring 2015 none of which are relevant, but i'm sharing because i think this shows how i was feeling during that time.
Every morning my stomach would wake me up, needing a bathroom urgently. Yes, literally every. single. morning. No laying in bed an extra five minutes or taking my time to wake up. I would dash to the bathroom as soon as my eyes popped open and I would spend 15-20 minutes in pain starting my day. Waking up in extreme pain everyday was exhausting, by the time I was done in the bathroom all I wanted to do was to go back to bed, but most of the time I didn't have that option. I was *fortunate* at this point that I was still having these bowel movements every morning, as painful as they were-no seriously, that isn't sarcasm. I would cry while in the bathroom often, because I was in so much pain and I had no end in sight. Some days I needed to have a bucket next to me, in case the pain was so intense it caused me to vomit. It was not my most glamorous time, and I was beyond lucky to have the support of my family and boyfriend that kept me going.
All day long I would continue to have urgent bathroom runs with bloody diarrhea, sometimes 7-10 times a day. It would be so sudden that I ALWAYS needed to know where the nearest bathroom was and would panic if I wasn't within a few feet of one. My body was malnourished and fighting so hard every single day just to survive. I had lost a lot of weight with the constant bathroom trips, and it was obvious I was sick just by looking at me, or so I thought. One of the saddest things I found during this time is that people would actually COMPLIMENT me on how thin I was, telling me they wish they could have my body. This spoke volumes to me on how messed up America is with their constant messaging to be as thin as possible even if it means giving up your health. A lesson I learned during all of this is to NEVER EVER comment on someone's weight, unless you know them, know their story, know if they are trying to lose weight for healthy reasons. I hope if you already don't do this, that you will start thinking before you speak, you never know when someone is fighting a silent battle.
Finally the end of the day would come. I would eat dinner and watch TV and just settle in for the night. Nighttime was my saving grace. I could eat and not have to worry about how I felt after. I could be bloated or in pain, but I wouldn't really care because I would get to go to bed soon. Sleep was my only reprieve from feeling miserable both physically and mentally and I waited all day for it. I would finally relax as I laid down in bed, knowing that for the next few hours at least I would get some relief from the physical pain and from my own thoughts. The best part of my life during this, was when I was sleeping.
I was constantly trying to figure out a solution, the right medication, or supplement, or treatment, or anything that would just make the pain and suffering stop. Physically my body was barely making it, and mentally wasn't any better. I'm not sure I can even properly explain what I was feeling and what was going through my head at the time but I'm going to try because it is just as, if not more important, than what I had to physically go through.
Any time I had to leave the house I would straight up panic. How far was I going? What if I can't make it there? What other stores are on the way that I could stop at? If I have to stop at a random place will they even let me into the bathroom? Will they understand it is an emergency? What happens if I can't make it to a bathroom and I go in my car? How humiliating that would be! Sometimes a 5 minute trip down the road was too much and I just couldn't get myself to leave the house, at least there I wouldn't have an accident. If I had to go somewhere in the morning, that meant waking up an extra hour early so I could have plenty of bathroom time before I had to leave. I also would leave extra time to get anywhere in case I needed to make bathroom stops along the way. Even getting to my doctor appointments was incredibly stressful and sometimes I had to cancel because my body just wasn't going to make it out of the house that day.
At age 26 I was often afraid to leave the house, and I felt extremely isolated and so far all the healthcare system had provided me with was "take these pills and see me in another month if you're not getting any better". No concern about my mental health, no concern about my loss of weight, no concern that I had no quality of life. I did see a therapist for awhile, to get me through, and it was helpful, but I was still struggling mentally most days. I gave up so much and it was so tough on me during these post college years that I had been waiting for. Dinners out with friends were a huge commitment and I often had to decline or bail last minute. Even just hanging out at another house was anxiety ridden especially if I knew there would be multiple people and only one bathroom available. It was easier just to stay in and stay in my routine trying to find a way out through truly healing. Tears were a daily occurrence and total meltdowns at least once a week.
I don't even think I was hiding any of my pain very well at this point to those closest to me. I would snap easily, get irritated, panic if I had to make plans. I mostly just wanted to be left alone because no one else could understand. When I couldn't just hide in my house, I would put on my best smile, and pretend that everything was fine, while internally struggling with underlying pain and exhaustion. Only a select few people in my life truly knew what I was feeling, to everyone else, I had a mild sickness, but was generally ok and happy. I didn't want to talk about it with everyone because it already was consuming so much of my life, so whenever anyone asked how I was, I gave them a generic "good" and changed the subject.
My anxiety was through the roof and I was at a loss of what to do about it. Therapy was only helping so much, but something needed to change because stress plays a very big role in this disease. I knew that if I ever wanted to get better, that I needed to get my stress levels to come down significantly, but I didn't want to just take another pill with other side effects. I turned to acupuncture, hoping it would help not only with my stress, but with my stomach symptoms as well.
I had a local recommendation from a family friend and the acupuncturist was truly amazing. She made me feel at ease immediately and so clearly wanted to help me feel better. I started with 2 sessions a week since my body was in such bad shape. It took a couple sessions to really relax into it, but once I got used to it, it was a wonderful reprieve for me. I would feel calmness wash right over me within minutes of the treatment starting and be able to relax for a full hour, something my body desperately needed. After a few weeks I did notice that my diarrhea would be a bit better for a day or so after treatment, but it never stayed better for more than 48 hours. Even so, I was thrilled to be seeing some kind of change. I continued for a couple years, paying out of pocket, for this amazing treatment. Of course insurance wouldn't cover it- they don't cover types of treatments that get you further away from big pharma. I'm very fortunate that I could continue this anyway, and I always looked forward to my session, and would leave feeling so much calmer and relaxed. Acupuncture can help a vast range of health issues, so if you've ever wondered if it could help you, I urge you to give it a try! And no, the needles don't hurt at all :)
So I found something at last that could help-albeit only for a few hours, but I would take whatever I could get at this point, and the stress relief was much needed. Acupuncture was helping symptom relief, but I knew it wasn't actually healing me, so I knew that I was going to have to continue looking for my answer. That's when I headed out to Philadelphia to find a new gastroenterologist, hoping to find someone that could help my difficult case.