Tears and Fears

Last week was my last infusion for my GPA, as well as a first-time meeting with my new rheumatologist, the person who is my new go to doctor. During this whole journey, every doctor we came across told us that any GPA question we had would get answered by my rheumatologist, that he would have all the answers. It’s a rare disease, and he would be the one with the all the answers. (We had met with a rheumatologist before my treatments, but he came off as unorganized and poor at time efficiency, so my lung doctor got us in with one that she liked and had worked with before).

For several weeks, I wrote down all my questions that I had, planning on asking this one doctor. Questions about my future, questions about what the hell is happening in my body right now, questions about when I can work towards my life again. So, when we finally met the guy last week it was more than a little overwhelming. All the emotions I’d kept bottled up, because I didn’t even know if mourning for myself was necessary, came spilling out. Not to mention I’m PMSing, so like, shit’s real emotional right now. The entire week leading up to the appointment, my carefully painted and grown out nails got all bitten off because of my anxiety of what he might say, and what my future could look like.

Unfortunately, my new doctor took my tears and fears as a sign of depression.

Here’s the thing. I’ve been depressed.
I spent many a day in high school feeling numb and unaffected by the world around me. Dark days that started with hating my reflection in the mirror as I got ready for school and ended with me heading straight to bed when I got home. I’ve got the diary entries to prove it, Jesus it was terrifying. Heck, my Depression is one of the reasons I read so much, it was an escape. And many of those traumatic days were triggered by health flares, so I am in no way trying to claim that my mental health is uninfluenced by my physiological health.

But I was not experiencing Depression last week. If anything, I was experiencing Release.

One thing my mother and I have both learned through the past couple months is how important our voices are when dealing with doctors. We should have picked up on it sooner probably, since we have dealt with so many, but for some reason we didn’t “Get It” till now. My mother pushing the doctors to do tests they thought were unnecessary is very likely the reason that they caught my GPA so quickly. My lack of trust in my first Ear Nose and Throat surgeon is the reason that we got a different one (I’m sorry ENT #1, but why would you wear a creepy smile while talking about cutting into my sinus passage??? Wtf). So with this in mind, I brought up my concerns with my new rheumatologist, that I was not Depressed. I tried to talk about the little projects I’d assigned myself like writing, or cleaning, or painting, or photography.

I’m not saying he ignored me, but he certainly wasn’t listening. And I love my mother, but her immediate agreement with him about the Depression certainly didn’t help my case either.

I’ve been thinking back on that appointment for days now. And I think what happened, was reality punched me in the face. For weeks, I had been spending my days in a fairy tale land. Where my only job is to stay home and indulge myself in my own creativity. It was days of nature documentaries, and decorating dream apartments on Sims, and planning a Go Green initiative for my family. With the exception of a couple spastic 5 second breakdowns over my morning coffee after having issues opening something, my illness wasn’t directly impacting what I was doing. I had restructured my routine so well that the amount of times I interacted with the disease was limited. I stayed bundled up in blankets in sweaters, which meant my lungs didn’t hurt. I washed out my sinuses regularly, so they didn’t hurt too much either. Even on hard days, when I felt I needed to just stay in bed, I only felt like I needed to stay in bed because my limbs were tired, so by staying bed and watching a movie or writing, I didn’t experience a high level of discomfort. It was almost as if nothing was wrong with me at all.

And then we jump forward to that doctor’s appointment and everything became reality.

When I had been “well” I was a public transportation user. So, I walked and bused almost exclusively. Bellevue has plenty of hills, not to mention I regularly wear heels, AND I was in ballet classes. In October, my calves were quite lovely. Not like, athlete lovely, but average civilian lovely. When he tested my leg strength, and I was forced to acknowledge that I wasn’t as strong anymore.
So, yea, there were tears and fears.

When I had been “well” I bought my first pair of pants that were a size 5. In fact, I bought three pairs of pants that were not size 0. After struggling with being underweight as a child, I, Raelee, had a butt. Not like, a Nicki Minaj butt, but a butt. Since I bought those pants I’ve lost 10 lbs., and my butt. When he asked about my appetite, I was forced to acknowledge that I hadn’t been eating as well and that my new pants didn’t fit so well.
So, yea, there were tears and fears.

When I had been “well” I had a semi-decent social life. Girlfriend and I went exploring in Seattle, or hiking with Dog, or study dates at Starbucks. In October, I went to a corn maze with a group of friends; I went shopping; I was in rehearsals for a show. Not like, a huge show, but a decent little script. When he asked if my pain was interfering with my life, and I was forced to acknowledge that I was scared to try to leave my house.

So… YAH!
There were plenty of tears and fears.


This past weekend, ever since he made his claim that I am Depressed, it’s like that part of my brain that’s so slightly miswired was like “Oh! We’re Depressed!? OKAY! We’re Depressed now.” The routine that I had worked so hard on pushing myself into, got shaken. I couldn’t write, I couldn’t draw. Girlfriend and I have been slowing working our way through Lost, and all I wanted to do was lie in bed and watch till my eyes bled.

I’ve spent the past couple days trying to talk myself back into being productive. On Saturday, I planned a party, and I’ve been pushing myself to make decorations. I even walked to the grocery store next door with Girlfriend for the first time in months. On Sunday, I missed an audition that I’d been really pumped for back in October, and I pushed myself to email the director to see if she wanted tech help so that I could still be a part of the project; as well as made plans with friends to help me with party preparations. On Monday, I made Girlfriend’s Valentine’s Day presents.

I’ve been trying to teach that so slightly miswired part of my brain, that while someone looking in on my life might think that I’m not being productive, only I get to decide what my Productive looks like. Trying to teach myself that if I can’t focus on one of my goals, to find an alternative way to have that goal, or push myself to work on my other goals. Depression comes back to haunt me when I get distracted from what I’m working towards, and very quickly it tries to derail me. Instead, I’ve been trying to work with it, instead of getting rid of it completely. Too numb to get out of bed Raelee? Fine, set a timer for 2 hours and read, then you can watch 2 episodes of [blank] but you have to doodle or play Solitare while you watch. Too numb to actually get dressed Raelee? Fine, but you have to brush your hair and wash your face.

So, Mr. Doctor, I understand that I have no medical education other than living through what I’ve lived through. But I do not consider myself Depressed until I let myself slack off.

And considering I haven’t slacked off since before my surgery at the end of December, I am not Depressed.

~Raelee



I should also mention that the appointment went fine otherwise, and I’ve possibly already gained some of my weight back. He and my lung doctor want me to start working towards my “normal” life and to try to leave more often, hence the grocery store walk. I’m still scared to be around other people, because like questions, and my immune system is suppressed, but I got a flu shot and I have hand sanitizer. I’m working on my plans for Spring quarter at school, and I think I’m going to try to get back to my actual job soon, but limit my shifts so that I’m not overdoing it. Other than the Depression thing, he was very calm and explanatory, and it’s sounding like my life may not be as derailed as I thought it would by my new friend, GPA.
If you are dealing with health issues, don’t forget that it is YOUR body. You get to decide what happens to it, and who is happening to your body. If you don’t like a doctor, and you have the means to find a different one, do it. I think I’ll write about my ENT doctor drama to give you a better picture, but I am so grateful that we got a second opinion and replaced her. But also if doctors are telling you one thing, and your body is telling you another, TELL THE DOCTOR, because you know your body better than anyone.
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