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Emily Kreiberg

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I HATE This Illness

Yesterday was a hard day.

It went from So good to So bad.

I saw my psychiatrist yesterday for the first time in person since this episode began a month ago.

In this whole episode, I’ve talked to her for a combined 18 minutes over the phone.

When I walked into her office yesterday morning and burst into tears, she looked at me, saw my shaking hands and flurry of tears and said ‘OH! This is Not where I expected you to be after a month of 900 mg of Lithium. Let’s get you Better!’

And my jaw dropped, because that is Exactly what I’ve been saying to Ryan the past two weeks.

‘I’m taking my Lithium. I’m getting my sleep. I Should be better than this.’

It was so validating to hear her say that I should be doing better, and then to suggest something that she thinks will make me better by NEXT WEEK!

I was SO excited to hear her say that. Sadie’s 3rd birthday is coming up April 13th and I want to be mentally Present for that moment. That’s my big goal coming out of this depression.

My doctor suggested going up to 1200 mg of Lithium and seeing how that goes by next Wednesday; and if that doesn’t have the desired effect, we’ll add in some Lamictal and that should do the trick.

She warned me that one of the side effects of Lamictal was a rash, and to call her office if I get one.

I laughed and said ‘rash or suicidal ideation; I’ll gladly take the rash!’

And then I burst into tears again and said ‘why do we have to wait until next Wednesday to start the Lamictal; can’t we start it Now?’

I’ve been in this place for a month- and this place is Hell. The idea of a pill that could lift me out of it within a week sounded incredible.

She gave me a prescription for it, and I called my sister to tell her how excited I was- ‘I’m going to be better in a Week!!’

When I went to the pharmacy to pick it up, the pharmacist pointed out some warnings that came along with it and I stuffed them into the bag and went home.

When I got home and read them, the first warning it has is about a potentially deadly rash that develops in 1 in 2500 people who take Lamictal.

From medicalnewstoday.com:

“Two severe complications, Stevens-Johnson syndrome and toxic epidermal necrolysis, occur in only 0.04 percent of people or 1 in every 2,500 taking lamotrigine.”

“Left untreated, Stevens-Johnson can cause sight loss, burn-like damage to the skin and mucous membranes. It can also be fatal.”

“Toxic epidermal necrolysis is a severe reaction that can cause the skin to peel off. This can cause serious infections. The symptoms mimic those of severe burns. Even with early treatment, this disorder may be fatal in around 10 percent of people.”

The FDA also released a warning in 2018 about the potential for Lamictal to shut down your organs and kill you another way:

“The Food and Drug Administration (FDA) is warning that the medicine lamotrigine (Lamictal) for seizures and bipolar disorder can cause a rare but very serious reaction (hemophagocytic lymphohistiocytosis) that excessively activates the body’s infection-fighting immune system. This can cause severe inflammation throughout the body and lead to hospitalization and death, especially if the reaction is not diagnosed and treated quickly.”

I spent hours last night looking at stats, user reviews and experiences and medical articles on Lamictal/Lamotrigine.

I know that every pharmaceutical drug has its own risks, but skin peeling off until you die?!! Skin and eyes filling with puss until you’re blind?? Your whole body turning on itself and shutting down your organs one by one?

In a world of options- these sound Fucking Terrible.

Can you imagine, if in trying to be a mentally present mother for my daughter’s third birthday party, I took my chance on this wonder drug and ended up having my skin peel off in sheets and dying instead?

Ryan was doing the research with me on his phone beside me and I just Burst into tears.

Here it is- 9 pm on a Wednesday night. Kids are in bed, dinner is cleaned up, and this is what we’re doing.

I wish I wasn’t like this. I wish I didn’t have this disorder. I wish I could just be normal. I wish Ryan could have a normal wife.

Other friends of mine have Lupus. Multiple Sclerosis. Cancer. And these are all Terrible. But I see so many of my loved ones sailing through these changes and navigating the turbulent waters with grace and calm. Their struggles are hard as hell- but they can set their mind as to how they will author their own journeys.

I Hate my illness because my ability to Choose how I feel about it is Exactly what my illness compromises.

I asked my psychiatrist about that yesterday too. I said ‘while I’m sick like this- should I be going to counselling? Should I be doing yoga and meditation? Is there stuff I Should be doing to get out of this faster?’

And she said ‘all of those things are Good for you- I won’t recommend Against any of them- but you have an Illness, Emily. Bipolar disorder is an illness that needs to be treated with the right medication.’

And today, while I sit in my housecoat, not speaking to anyone and not leaving the house, just waiting for my increased dose of lithium to work- I feel really futile. Like nothing I can personally do is going to make anything better and it’s a terrible feeling.

We made the decision last night to heed my doctor’s original advice- try the increased lithium for one more week, hope it does the trick by Wednesday the 9th, and only add that risky Lamictal drug next Wednesday if we have to.

I don’t have much more to say cuz I’m feeling pretty down in the dumps today, but please, if you have a moment, can you join me in hoping that the increased lithium is effective? And barring that- that if I have to start Lamictal, that the odds be in my favour?

XO,

Em

Please comment if anything I have said really spoke to you. I quit newspapers becuase they weren't interactive. PLeASE interact. Amen!
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