Monday, September 25, 2017

My Mental Health Goes to Shit Sometimes #RABlogWeek2017

wooden background tinted darkly with white text: #RABlogWeek2017 - My Mental Health Goes to Shit Sometimes - Not Standing Still's Disease

It's RA Blog Week! Today's prompt is: Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?

I've talked a lot about how my mental health is impacted by being chronically ill. It's a process that we all go through as patients.

It's one of the most difficult struggles we face.

My biggest struggle with mental health is completely linked with my physical health. I wind up pushing through and not asking for help I need. Obviously, part of that is being an abuse survivor, but a lot of it is because I'm incredibly independent (read: stubborn). I've always wanted to take care of things on my own because that was my childhood. When I cannot do things on my own, I usually just struggle through as best as I can or forgo whatever activity. 

I get angry and shut down emotionally instead of communicating my frustrations. I know that sometimes, it's because sharing how angry I am with my body will lead to crying - something I absolutely hate to do... mostly because of how I was raised.

Crying was showing weakness. It meant I wasn't being strong or resilient or persevering. I know now that this is bullshit, but it's a hard thing to change.

selfie of me with short hair; in the background are posters of the skeletal system and muscular system; I look tired/annoyed/run down and am wearing a hospital gown, though you only see a snippet of it on my right shoulder; there is a filter on this photo that makes it look distressed and discolored

The unpredictability of living with chronic illnesses is detrimental to my mental health as well. I can't plan effectively when I don't know how my body will react.

I was just in New York for a trip. I had tons of fun and spent time with some of my favorite rheummates. Even though I've started to buffer my trips to give myself time to recover, that doesn't always do the trick. Sometimes I only need a day and other times I need a week - and there's no real way to predict that, even when I get home.

It's hard to know if I will be up for appointments like physical therapy, let alone to clean the guinea pigs' house.

That's really hard, especially being a planner.

It's taken me nearly thirty years, but I'm starting to learn how to communicate my pain more effectively and ask for help. I'm sure it'll be a continuous process until the day I die. Hell, what person is good at this without illness?

Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

Friday, September 22, 2017

Guess Who's Back? (rash is back)

on left, picture of Kirsten with purple cloth across chest and rash on face, chest, arm; on right, a reddish text box with white text "Guess Who's Back (rash is back) Not Standing Still's Disease"

Yesterday was one of the roughest rheumatic days I've had in a really long time.

I woke up in extreme pain, with my hip feeling as though I had bursitis again. My knees and ankles were horrendously achy. It was so bad that I set up a ton of pillows, broke out the ice packs, and turned on my Oska Pulse.

All day, I was just in a lot of pain. It wasn't until T came home that it got even worse - the rash hit full force.

Because I struggle with temperature regulation issues, I often get warm randomly. This was different, though. I knew there was rash. Listen, this damn rash is something I remember dealing with all my life. Sometimes I wrongly assume that I have it, but that's pretty rare. It's obvious to me when it appears. It hasn't really popped up recently, though, because my disease has been well-controlled.

I got up and went to the bathroom, nearly crying when I saw just how bad my rash was.

It switched sides throughout the night, moving from my left to my right over about an hour. Soon, it was on my legs, too. Sleeping was hard, though not nearly as hard as when I was a child. I remember barely sleeping, tossing and turning in pain. This time, I just couldn't get to sleep and then I was out quickly for a few hours at a time.

Not everyone's rash itches or is uncomfortable. If I recall correctly, I think it's under 10% (5% maybe?) who do have that... and I'm one. Hooray?

I'm hoping that this is all due to the quickly-changing weather we've been having. We had a horrid storm run through the night before with temps still near 100 at night. As much as I want to, though, I can't exactly rule out that this isn't from upping my nortriptyline, either. I hope that it isn't, but only time will tell.

Thursday, September 21, 2017

Nortriptyline Day 21

darkened photo of syringe, a pink pill, a white capsule, and two orange and white capsules - under, a yellow label with black text: "Nortriptyline Day 21" - under is a white space with black text "Not Standing Still's Disease"

I called my neurologist's office the other day to update them on how the nortiptyline was working.

After waiting five hours for a call back, I explained that this was helping a bit but not as much as I'd like. I also brought up nausea I've been having with this medication - something that's made the motion sickness I've had for a few years even worse.

I threw up several times the other day in a car. I've learned I really can't sit in the backseat right now.

We decided to double my dose and see what happens. If the nausea gets to be too much, we'll look at a new medication.

I have been able to be more productive lately, which is nice. I still am waking up with migraines, but they dissipate throughout the day - not always, obviously, but usually. I'm having to rely less on my Axon Optics. I love them but it is nice to not always have to have them on.

We'll see how 20 mg of nortiptyline works.