Auto Immune Disorder
Things just got real…
Throughout my life, I have always seemed to be a bit more prone to getting sick and injured. My friends would give me crap because at the first sign of a sniffle or cough, I would ask that individual if they were feeling okay in anticipation that, whatever they had I was surely going to contract.
College was like clockwork. The moment my friends and I would return back to the dorms or to the classroom for fall semester, I would get strep or bronchitis. My young adult life was no different. If it were cold and flu season and I was around mom’s with young kids, whatever their kids brought home from daycare/school I knew was heading my way shortly. It became my norm and I knew that it would pass eventually. I’d be back on my feet shortly. However, what I didn’t know was that I had an underlying health issue causing me to be more prone to getting sick and slower than average recovery times.
2020
At the beginning of quarantine, in March of 2020, I was actually feeling really well all things considered. I had been a couple months strong with my switch to a mainly vegan diet. Work slowed down due to COVID, so my stress levels were low and I was consistently working out from home. And on top of that, Minneapolis weather was making a change for the better and starting to warm up! I was juggling home projects and feeling good!
That all seemed to change just a couple short months later. In May I was struggling to stay awake through an entire day. My energy levels were bottomed out and to say I felt sluggish is an understatement. This depleted feeling was not something caffeine could fix. So after being exhausted for two weeks straight, and consistently having to take 1-2 hour naps every day, I decided to go to the doctor to get my blood tested.
Like anyone, when you make a drastic change in your diet, you think all signs lead to the most obvious variable. However, what they found was two fold.
Hypothyroidism - If you’ve been keeping up with my posts, most of you know by now that I have hypothyroidism. Well, it turns out that my levels were low, so they had to increase my medication to help my tiny hormone gland due its powerful work. That one wasn’t a big surprise to me and was just a typical checkup that I have to do every 6 months.
Low Platelets - What I didn’t know was that I also had a low platelet count. Healthy ranges are between 150-450, and mine came in at 114.
When I heard my results back from the doctor, I of course had no idea what that meant. She informed me of the low count and told me that I needed to remove alcohol, Tylenol and Advil from my diet for the next month and then get retested. My first reaction was feeling a sad that I couldn’t have a cocktail (or 2) during quarantine. Of course my next thought was to head on over to WebMD to read up on what this could mean…which I would highly advise against. Possibly fatal, blood cancers and bone marrow issues were just a few that I learned about.
After chatting with family and a couple of close friends, I decided to just do as the doctor instructed and go about my days as normal as possible the next four weeks. In my mind, there was no point in worrying about a potential diagnosis that hasn’t been finalized and there was nothing I could do about it at that point. So…I waited for four weeks and then went to have my blood checked a second time.
Thankfully, I got my results within the same day. (I’m not a very patient person lol). After seeing that my platelet count was still low, I didn’t wait to hear from the doctor and instead called her. She informed me that she would be referring me to a specialist to have more blood tests run. What she didn’t tell me, was that the number she gave me to call was for a Blood Cancer Specialist.
Dialing that number and hearing those words ring in my ear immediately made my stomach drop. Here I am living by myself with no family in state, in the middle of a pandemic, and I have to go see a Hematologist-Oncologist. I called my mom, who happens to be a nurse, and of course got her two cents on it all. At first she told me I would be fine, but after a few hours had passed, she started sending me a bunch of questions to probe the doctor with about Leukemia and some other family illnesses. At that point, I just broke down and started crying. I could feel something was wrong with my body, but this! This was more than I felt I could handle.
After taking some time and talking myself off my own cliff, I calmed down. I was able to get scheduled with the Specialist the very next day thanks to a cancelation, and knew I would have answers shortly. My mom offered to take time off and drive up, but I wasn’t sure if that would help me stay strong or cause me to break down again, so I declined her offer and decided to proceed as I always do…solo.
The morning of my appointment, I allowed myself a few tears while I was out for a walk. I pushed all of my work to the side and told myself that I was going to stay busy, but concentrate on me that day. Allowing myself to cry that morning, gave me the chance to release the anxiety I had for the afternoon appointment. What I wasn’t expecting, was to walk through the door to check in, and to be handed a cancer brochure on chemo, family therapy and more. I thought to myself, I haven’t even been diagnosed yet. I don’t want to read this! So, that little bit of annoyance helped push aside my sadness and got me into that patient room.
ITP - Immune Thrombocytopenia
Now, although I didn’t have the best experience when I first arrived, I want to give this doctor a HUGE kudos. I was mentally prepared to break down in tears part way through whatever conversation was about to be had, but he started out EXACTLY how I needed him to. “This is most likely an auto immune disorder and not cancer. We are just going to rule everything out with some more blood tests and I’m going to talk you through it all.” Few! I am so thankful for him and his ability to lay out the facts from the get go. His professionalism was not missed even in the mix of emotions I was having.
During our conversation, he explained every blood test definition and what it meant dating all the way back to 2013. (Because I have hypothyroidism, I have my blood drawn 2x per year, so I had plenty of history). What my charts showed, is that I have actually had a low platelet count off and on throughout my entire blood chart history that they had on file. This was just the first time it was this low and had been caught.
Apparently auto immune disorders are fairly common in young women. They can be managed without medication and sometimes go undiagnosed. The typical risks that you want to be aware of are clotting issues both internally and externally. However, the cause of ITP is very interesting. Why it occurs is because the antibodies that are supposed to be fighting infections and illness, are instead a bit confused and fighting your platelets. Your platelets recycle themselves on a weekly basis, so you can have varying degrees of platelet levels in any given week. What you want to watch out for is if they get lower than 50. At that point in time, you would most likely need to be put on medication (which apparently has strong negative side effects, so no thanks). However, in my instance, because I was at 114 for my first test and 126 for my second test, I don’t need medication at this time and just have to monitor my platelet levels every 3-6 months. Fantastic news in my eyes!
Now you might be thinking “Well Jen, you were still diagnosed with an auto immune disorder. That’s still not a positive.” I don’t disagree, but what I’ve come to terms with is that I’ve already been living with it. It has been my normal for years and is something that I am now just cognizant of. I understand that I have a higher likely hood of getting COVID, and I now know that I will need extra monitoring if I were to get pregnant. However, this is not defining me or my life, so I’ve chosen to ignore it in a sense and move forward.
I’m grateful for having answers. I’m grateful for how the doctor handled our appointment. I’m grateful for my friends and family that supported me through this emotional time. And most of all, I’m grateful for my body. It might be a bit broken, but I am concentrating on making better decisions every day to make it stronger. Meditate. Increase water intake. Reduce stress. Eat healthy. Increase movement. All things that are in my control are what I’m deciding to concentrate on.
As I mentioned in my post on Tuesday, life is all about your outlook. You can decide what you allow to affect you both positively and negatively mentally. If you don’t like something, make a change and give yourself something else to focus on. I don’t have all the answers, but I do know that has helped me in my journey and I hope it does the same for you.
Be well my friends!
Jen
