Where are those onboard drinks? I could use one.
Dealing with an autoimmune/uncertain diagnosis not only creates physical problems, but also emotional ones. I’d dare say this has been the greatest challenge for me.
Yes, I try to be tongue in cheek here. I mean, if you can’t have some sense of humor about these kinds of things, you are in for a long haul. But the truth is when I first realized something was going on I was far from OK. So far.
I remember at one early point, dealing with some skin issues related to sun exposure, thinking haphazardly maybe it’s some kind of little autoimmune thing. What was autoimmune? I really had no idea.
As things seemed weirder and weirder . . . and as my dermatologist ordered some lab work, it started to sink in that maybe something was actually wrong.
As I started googling and researching, I found out a lot more about autoimmune diseases – and none of it was good.
After seeing the first rheumatologist and hearing that something “was not normal” it really sunk in that something was truly amiss. Up to that point, I’d been hoping there was a simple and less scary explanation.
Did I take this in stride? Absolutely not. I recall sleepless nights. Crying. Panic. And one day when I hadn’t slept, I googled a lot. And got to the point I was pacing and so afraid. I went to my regular health center’s urgent care hours. And when the PA came in, I was a complete mess. Thank god she was a kind, caring and compassionate person. She ordered some tests that helped allay some immediate concerns. She prescribed Xanax.
I followed up with my regular doctor, who was so very kind. She was trying to calm me down, and would say “when you hear hooves, don’t think of zebras”. She prescribed Zoloft. I went from 25mg>50mg>100mg.
The meds sank in. And I finally found a good rheumatologist, who I still remember saying (as I shared my fear of the various connective tissue diseases) “don’t despair – we have ways of treating all of these”. I hold on to that.
Do I still worry? Of course I do. In fact, between starting and finishing this blog post I “researched” some things. There are some minor “new” things I have noticed. My rheumatology appointment is in 2 months. Should I message her? Or just wait? I don’t want to seem overreactive or like a nag, because in all honesty I want/need my rheumatologist to like me. I am still undecided about this.
What I do try and do is just take each day as it comes. I feel OK. I can do what I need to do. I just want to be sure I am staying on top of things. So that I can be as proactive as possible. Address anything that needs addressing. But not dwell. Not dwelling is hard for me.
I have gotten considerably better at being able to put my anxieties aside in order to enjoy other things. In the beginning I just wanted to stay home and be scared. Either I burned out on the intense anxiety – or the meds really are doing their thing – probably both. But I think it’s important to recognize the emotional toll this can take. And that it’s not so abnormal to be anxious, since the future is not clear.
Each time a new symptom appears or reappears, the anxiety starts to creep back in and I work to push it back down. I can’t change the symptom. I can work to change my reaction.
I think most people around me don’t see my inner struggle. My husband saw when I completely fell apart for a bit there. But other than that I haven’t told but 3 people about anything I am going through, and they don’t really ask about it. Because I seem fine.
So, I guess a lot of those old adages ring true. “One day at a time”. “Live in the moment”. “Be thankful for today”. “Think positive”. I keep reminding myself….