the autoimmune professor

In the meantime, I started really researching lupus and other autoimmune diseases. I wanted to know everything that I possibly could. Thankfully, because I am a professor and in my second doctorate program, I have access to unlimited medical journals through my libraries. Therefore, I was able to not just see what a general search on the Internet had to offer, but actually able to view research that had been done, medicines that were used, side effects, etc. I am not going to lie… the research scared the absolute pants off of me. I have a friend who has Lupus so I kind of knew what I was dealing with in the grand scheme of things, but never knew some of the details of being diagnosed with an autoimmune disorder and all of the things that comes with that diagnosis. Additionally, I wanted to talk to someone, to see what other people had gone through at the diagnosis level and what they were using to live and to function. I started looking for blogs, websites, social media accounts, and while I found some great stuff out there (which I will be sharing throughout my articles) – I didn’t find anything that was super personal along with the follow through, the research, what worked, what didn’t. I wanted to hear others journeys, what they recommend, what are the good books out there, etc. I can do research all day long and see what the scientists have to say about it, but I wanted to hear personal stories, I wanted to know that everything was going to be ok, that there was a way to fight this, that it might be hard, but you can get through it. I also really wanted to know what happened at the doctor on those fateful days that people were diagnosed. Hence… the autoimmune professor was born!

Anyway, I kept researching, I made notes, downloaded medical articles, looked up other things that could contribute to my test results, because if you remember from the part 4 article, I still didn’t have access to the other test results, so I had no idea what else was possible. The waiting felt like a million years and I am pretty sure that I probably aged a few years that month, but finally February 8^th came and it was time for me to go to the doctor for my results. The weekend before, my husband and I had gone to Chicago for a long weekend and during this time I came across a series of articles about how much stress affects those with autoimmune disorders. I was in a doctorate program that I hated and was so stressed all of the time. In my other schooling, even when defending my dissertation, I had never felt stress like that. Sure, I would get stressed just like everyone else, but this program was like a constant knot in my shoulders at all times – even when I was logged out and not doing any work. So, I told my husband about it, I told him how stressed I was, how much I didn’t enjoy it (which was big as I didn’t need a second doctorate – I was doing it because I enjoy school and learning), and how I wasn’t sure that this program wasn’t possibly what was making me sick. We decided at that time that I could withdraw, that it would be ok, and that I could do something else in the future, but right now, I needed to de-stress. It was so nice to hear this from him, because I will be really honest, I am not sure he understands what is really wrong with me LOL! So, for him to understand that me saying this stress is making me sick and him understanding that made me so very happy and so the morning of Tuesday February 8^th, I withdrew from school and that afternoon I am going to get my answers.

One of the things I want to point out – while I was sick for a very long time – I never actually made it a point to seek out answers or a diagnosis. I honestly always thought anything that was wrong with me was my anxiety and so I really didn’t think much past that. So, while my path to diagnosis only took 2 months, this is the speed of light in getting diagnosed with an autoimmune disorder. According to a lot of research that I have read it can take an average of five doctors and five years for a person to finally be diagnosed. This leads me back to my first article “Path to Diagnosis Part 1” – LISTEN TO YOUR BODY!!! If you feel off, you are. If you feel sick, you are. You know your body and you know when something is not right. Never stop looking for answers and while I am a psychologist and I know that sometimes things are in your head, do not let people tell you it is all in your head if you know it really is not.

I am driving to the doctor’s office which is about 45 minutes from where I live and while I usually enjoy driving especially when the sun is out (even though it was like -10 degrees that day), the sun makes me happy, but the closer I got, the more nervous I got and honestly the more scared I got. I knew I was prepared or at least I thought I was…