The date is April 9th, 2020 and things are far from normal. I never imagined the whole world being on a complete lock down and forced to quarantine. But today, that is the reality. It has been a long time since my last blog post, which means I have a lot of catching up to do so I apologize for the long post. Kudos to those who read all the way through.
In regard to my health journey, I started a new medication back in August called Humira. You may see the MANY commercials for this medication on television, especially now that many businesses are no longer advertising due to closures. This medication is a self-injection that I started doing bi-weekly in my thighs. The decision to start this medication was not an easy one, but it was a decision I made with a lot of hope for future remission. I needed to make some sort of change in my life because at that time, I was absolutely miserable and the most sick I had ever been since being diagnosed. After a visit to the ER, I finally took the plunge to start Humira and do self-injections for the rest of my life.
At first, the Humira helped me tremendously. I saw immediate results and for the first month I felt like I had my life back. I was able to go out and do things without fear of needing to use the bathroom. It was the beginning of October when I slowly started falling back into a flare. I began to develop severe fatigue, body aches, inability to focus, more weight loss, and I honestly became really depressed. I thought that I was coming down with the flu, but after multiple visits to the doctor they had no answers for me. It wasn’t until I got some blood work done that I found out my iron was dangerously low. I had become anemic due to the amount of blood I was losing in my stool, in addition to the blood I would lose during monthly periods. It was another hard pill to swallow. There were days when I couldn’t even muster the energy to get out of my bed or even open my eyes when waking up. I would take an endless amount of naps and had to skip multiple classes. It was another wake-up call that something had to change. I began to add more iron-rich foods into my diet as well as a supplement, which brought immediate relief to my symptoms.
While all of this was happening, my family and I attended a Crohn’s and Colitis Conference in Berkeley in November and I continued doing my Humira bi-weekly, which still had not completely healed me. This conference was a chance for me to meet others who were my age with this disease and even some really great doctors from the Bay Area who lived for this stuff. We got a ton of great information from that conference, and I even got connections with the Crohn’s and Colitis Foundation to start my own support group here in Reno (which is still in the works!).
After this conference I had an honest conversation with my GI doctor and said that I was not satisfied with how the medication was working. In response, my doctor suggested I get a second opinion before changing my treatment plan. Thankfully, I was able to work with my insurance to set up an appointment with a prestigious doctor in Salt Lake City at the University of Utah Hospital.
In January, my parents and I flew to Salt Lake and our doctor’s visit was over two hours long. We were able to ask all the questions we wanted to get the clarity we needed and figure out next steps. The doctor in Utah decided to increase my Humira dosage to once weekly, along with some diet changes, and if after one month this treatment plan did not work we would consider switching to Entyvio which is an IV infusion. I had all the hope in the world that switching to once weekly would help me improve, especially since the bi-weekly dosage was present in my system and making a small, noticeable impact. I immediately went home and followed his orders, doing Humira injections once weekly for one month.
Once I hit four weeks, I still was not seeing a total recovery from my symptoms. I didn’t want to consider this a failure, but rather give it more time to work. After five weeks of weekly Humira injections, I finally started to see a huge improvement. This came after I made the conscious decision to cut out all added sugars from my diet and really pay attention to what I was eating. I also decided to make more positive changes in my lifestyle, like getting eight hours of sleep every night, regular yoga sessions to relieve any stress, switching to organic only products, and digestion activating stretches. The changes in my lifestyle in combination with the injections are what made the significant difference. Now, all I had to do was avoid wavering from the path.
Little did I know that my new insurance company would give me SUCH a hard time when trying to order my medication for weekly dosage! I spent every afternoon for about a month trying to get my medication approved to order, and my insurance company kept denying it. How could they deny me of medication that was deemed necessary and was helping me improve?? My biggest fear was becoming so overwhelmed and stressed that I wouldn’t get my medication in time for my next dose and fall back into a flare just like I did before. I was finally at a good place and I didn’t want to risk losing that.
Luckily, I finally got my insurance to approve my weekly Humira dosage, but with the syringe instead of the pen (sort of like an epi-pen). This meant I had to re-learn how to inject myself with a syringe at my doctor’s office since I had only ever used the pen. Believe me, I was so nervous to actually poke a giant needle into my thigh, but it hasn’t been as terrifying as I thought it would. In fact, I think it’s slightly easier than using the pen and I don’t get any bruising or rash side effects on my thighs. Regardless, I am happy to say that I have my medication and insurance all sorted out and the stress of possibly not getting my medication has been lifted off my shoulders. (Yikes, I sound like a drug addict!)
At this point in my health journey, I think it’s safe to say that I am in remission, but I don’t want to jinx it! I have never felt better since being diagnosed and before this quarantine started, I was doing things that I hadn’t done in years due to fear. I was finally able to live my life the way I wanted to, not the way my disease wanted me to. I still have some bad days, but I try to focus on the good. I celebrate the good days and embrace the bad days so that I can try to move forward in a positive way. My mindset since making those small lifestyle changes has drastically improved my way of life.
Amidst this roller coaster, I did have some exciting things to celebrate! I graduated from UNR Magna Cum Laude with my bachelor’s degree in December and accepted a full-time job at USAC in November. While these first few months as a full-time employee in the workforce have not been ideal, I am just glad I graduated when I did and I am able to gain new knowledge and skills from this experience. I have been working from home now since March 17th and life has changed dramatically, but I think this quarantine period has been a good mental reset for me and a good time to reevaluate the goals I set for myself in January.
Because I do have a lowered immune system due to my condition, I want everyone to know that I am taking the proper precautions during this coronavirus outbreak and I am healthy! I know we will all come out of this stronger and hopefully a little more grateful for the things and people we take for granted. Check in on your friends and loved ones to make sure they are okay. Everyone deals with tragedy in different ways and it is important to be mindful of how others may be coping. So here’s to three more weeks of quarantine! Stay strong!
P.S. if there are any topics you would like me to post about during quarantine, please let me know! Send me a text, email, or go to the Contact page and type your request there. I am always up for suggestions.