I'm A Fucking Zebra.

. Rare autoimmune disease. 🦓 Borderline personality disorder. ADHD. Started IVIG infusions 5/9/18.

[stardustinmyhands]

I’m in pain all over.

But

It was worth it, my boyfriend and I haven’t made love since June cause of my injuries and my hospital stay.

We made love twice yesterday, it was spontaneous and wonderful. Well today every joint in my body is hurting. I don’t regret it one bit. Being with my boyfriend was worth it.

He’s taking take of me today, as he does every day.

We also went out to dinner with another couple we are friends with. That was nice tbh, I’ve been stuck in the apartment so long. He talked me into it, I’m glad he did.

[stardustinmyhands]

I was started on two blood pressure medications. They cause headaches.

And I am having mild headaches for sure.

😩

[stardustinmyhands]

A nap didn’t help me feeling blah.

I’m not as groggy anymore.

But

My head hurts. My legs sore, but not painful.

I’ve taken my otc migraine med, my prescription pain med, nausea med, and another med that is strong.

I may cave and take a prescription migraine medicine. 💊

[stardustinmyhands]

I had severe knee pain all day long.

My pain meds, and my dinosaur weighted blanket helped.

I went to the dr, I got 7 vials of blood drawn. Tomorrow I go to the burn unit, I will see what they say about my left foot that is still freaking healing (today is August 10, I got the sunburn on July 3rd).

Dr just increased my one med, nothing big.

My tummy is actually doing ok. I’m so glad for that.

[stardustinmyhands]

EVERY SINGLE JOINT IN MY BODY HURTS TODAY.

Today is a very big variety of medicine, hydration, a heating pad, and sitting on the couch watching tv. (Right now I’m watching Fellowship of the ring, extended edition). I’m trying to color to distract myself.

I went to a party yesterday, from 6:30 pm to 11:45 pm. By the end of it I was so overstimulated, I was hugging my capybara named Kippy, and crying, while my boyfriend soothed me. I was hugging Kippy the whole time my boyfriend drove us home, I couldn’t handle to see the car lights.

I had a lot of fun at the party, I got to socialize with my community. Since I’ve been on the injured list, and then in the hospital. My boyfriend and I haven’t been anywhere in like 2 months cause of me basically.

I feel like I’m a burden on my boyfriend, he always tells me I’m worth it all. Everyday he changes my bandages on my feet and says he does it cause he loves me.

I remember when I moved in with him, I said I’m not crimping your life style. His reply “you are my lifestyle”

When I moved in he put shelves for me and cleared other shelves for my stuff.

He’s the best thing to ever happen to me.

[stardustinmyhands]

I start this today.

Another shot I have to take.

[dragonpyre]

Migraines are literally the stupidest thing in human evolution. "Oh no, we're experiencing too much Thing! Better send a rail spike through the skull and blind ourselves about it" like c'mon, man

[stardustinmyhands]

I’m ready to get back to my normal. Going to work, driving, helping around the apartment more. Right now I’m kinda a lump on the log

My burns I got on July 3rd are still healing on my left foot (I’m writing this August 7th). I’m a slow healer in general when it comes to everything. And it’s really prevalent now. I wanna return to my normal.

I was afraid I would have to return to the hospital today, but after talking to my boyfriend and taking drugs I feel better.

I’m seriously thinking I have to get on disability. I will have to talk to my boyfriend more about this. (He got the new Samsung phone today, so he has a new toy).

I think I will find a lawyer this time to help me through it. I’ve never had a good one, my boyfriend will help me find one for sure. I saw how much I would get in an estimate on the social security website. We would be able to live with my disability income and his income.

I’m also in a lot of pain today. I’m also itching where I was sunburnt and while I was in the hospital I didn’t take a shower, so I think my skins moisture barrier was ruined. So I’ve been living on atarax, and putting on the cream the burn unit gave me.

While I was in the hospital they gave me atarax to calm me down. I’m not allowed to take regular anxiety meds cause of the contract I have with the pain dr (they were shocked I stopped Valium cold turkey). I take 2 types of class two controlled substances. I feel a little weird when I go pick up at the pharmacy together. But I have chronic pain and AUHD.

I was put on Samsca, cause they wouldn’t touch my behavioral meds. They won’t touch meds prescribed by my psychiatrist, and I’m stable on my mood meds. So they have to adjust.

I will say Samsca is hella expensive, and I’m shocked my insurance covered it 100%.

[stardustinmyhands]

I got a new diagnosis while in the hospital.

[stardustinmyhands]

I’m home (as of last night) after 7 days in the hospital. My new kidney dr put me on a pill called Samsca, its use to increase blood sodium. It’s hella pricey.

That is the price for 15 pills, 15 mg pills. I take half a pill a day. It keeps me out of the hospital. Soooooo it’s so worth it to me.

[stardustinmyhands]

I got admitted to the hospital for critical low sodium levels.

My boyfriend just left to go home and sleep for work tomorrow.

He said he will spend the night with me tomorrow.

[stardustinmyhands]

I went to the burn center yesterday. I was quite impressed. They treated me wonderfully.

They sent me home with supplies for wrapping my feet. (Since both feet are burned).

I have to go back Monday, and then they will determine if I need a procedure to remove the dead skin on my left foot. The dead skin is in the shape of a heart, it’s kinda funny.

I’ve cried 4 times since yesterday, I do feel better today. Even more since they are being so aggressive with my treatment.

[stardustinmyhands]

Boo-booed feet.

We are going to the burn center tomorrow, I’m just too exhausted today

My dr changed my pain meds to every 5 hrs, down from every 8 hrs.

I’m so relieved about that.

[stardustinmyhands]

My boyfriend changed my feet wrapping, he said my feet look better.

Im happy about that.

[stardustinmyhands]

[stardustinmyhands]

So I ended up in the er last night for my burns on my feet. They wrapped them in Vaseline gauze (which stings like hell, thank you pain medicine)

They told me to go the Az Burn Center. So I will go the center later this week.

I cry a lot out of frustration and pain.

I have amazing support and I don’t have to worry about working. My boyfriend said me getting better is more important than money. Money is tight, but we are making it. My boyfriend is amazing. And I’m grateful.

Lots of Lady Gaga on YouTube, Lord of the Rings movies while I’m a bump on the log. I feel so guilty that I’m not able to help, but then I have to remember it hurts to walk and stand.

[stardustinmyhands]

Guess who is missing my other two days of work. The tops of both of my feet are raw and red and I’m unable to wear shoes, let alone slippers.

I’m still taking pain meds around the clock. I sleep in 3 hr increments cause I need more meds and lidocaine spray.

I’m tired and crying all the time. I apologize to my boyfriend all the time that I’m a big crybaby.

I have a pain dr appointment on Wednesday, so I will have to buck it up and wear slippers regardless of how my feet are feeling.

This really sucks. I’m in constant pain and I done dealing with it.