CIDP, a memoir

[cidpmemoir]

Any stress at all physically hurts my body. My skin, my muscles, my brain, my heart. And if I get mad enough, sometimes if I'm lucky, I'll randomly pass out.

My life is so different from what it was.

[cidpmemoir]

Nurses are always the real heroes

My infusion nurse is trying to get me accepted into some program so that I can actually afford the steroid that I need. If angels are real, it's her. If I get it, I won't be able to see her anymore and.. While I am grateful to possibly get the steroid, I will feel an extreme sense of loss because I've been seeing her every three weeks for the past couple of years. So many emotions to process while I wait. I'll be waiting for an answer for the next three months at least.

Why is it this difficult?

[cidpmemoir]

Vygart Hytrulo

I've been waiting for this steroid to get approved for months now. I've really been looking forward to it, since IVIG seems to not be working as well.

Well they called me and explained that since I'm on Medicare, I pay 20%. Which adds up to $3,200. A week.

Without Medicare this steroid would cost me $16,000. And I would need this PER WEEK.

I already had applied for the PAN grant and was accepted. They only pay for 2 1/2 weeks.

...I'm just truly devastated right now. I really needed this.

How can they justify $16,000 for something that works for a rare disease?? That's so fucked up to capitalize on my suffering. I know that they're banking on the insurance companies covering it or maybe I can get family and friends to start me a GoFundMe. FUCK THAT. THIS IS RIDICULOUS. HOW CAN THEY DO THIS.

[cidpmemoir]

My car broke down while I was already having a bad day

Yesterday, while my partner and I were out driving, our car started overheating. I pulled over, turned it off, and then it wouldn't start again. I already wasn't feeling it that morning, but fine errands need to ran. And now we're sitting in the sun, with no water, midday which means everyone that could possibly pick us up will be at work.

My first thought, was no problem, we can just walk to a gas station - Oh wait, I have ankle braces, I'm not walking anywhere lol especially in the direct sun. My partner was worried the car would be towed if we left it. My second thought, no problem! I can help you push the car up this hill....nope nope.

Young, healthy Ashley could do these things and deal with these situations. Who I am now, not really. I called my dad and I was trying to explain where we were and I couldn't even think. It was so hard to communicate to him what was happening. It was like my brain just wouldn't work. I just broke down and cried. I felt so useless. I would have been so fucked if I didn't have my boyfriend with me. I'm so lucky I had him to deal with the situation.

The car cooled, we got it to start again and drove home. I slept almost the entire day. We brought the car in this morning and now I'm waiting.... But the stress of all of this is literally hurting me so badly and I don't even know how to describe it to anyone. What hurts? My joints, my skin, my muscles, my neck, my back, my hips, I feel like I can't breathe.

This life is really annoying when you have to deal with real life stressful situations. And honestly this ordeal really wasn't even that stressful, but to me, I think I'll be feeling this for the next week at least.

[cidpmemoir]

[cidpmemoir]

Just trying to each some m&m's to not pass out.

Don't worry, this actually isn't that bad of an episode. I'll be fine. This just happens. This is just apart of my life.

Sometimes my hands can't cooperate.

[cidpmemoir]

Through the PAN Foundation, I was approved for a grant for the vygart hytrulo!

That's all I know so far lol it's supposed to help pay for it, which makes me nervous that it's really expensive then 😅 hah we will see! But at least part of it is paid for.

[cidpmemoir]

I'm feeling so terrified of the world I'm in

The amount of stress the world is putting on my body right now, it makes me want to scream. I can feel it in my bones. Under my skin. My brain is too cluttered to focus on my movements today. I'm jittery, clumsy, off balance. Everything aches and I know exactly who to blame.

[cidpmemoir]

A Keppra Journey in America

This story starts in my gynecologist's office. I was getting a new IUD placed. I had one put in before, but that was when I was healthy. Since I've become sick, my body does not react well to any kind of stress, mental or physical.

So I'm laying there on the table, I prepare for the pain, but I pass out instead. I wake up as they are yelling my name and placing oxygen over my face. I have three doctors holding me down and the room is FULL of paramedics. And yes, I still had my legs open with all of the tools still inside of me. They tell me I had a grand mal seizure.

Now, this sort of thing has happened to me before but each time, it does seem to get worse. Apparently when I pass out, my blood pressure drops so low that it seems like a seizure, however my CT's and MRI's all clear me for seizures every time this happens.

This time, my hands were so locked up, I couldn't move them at all, my legs were in so much pain, and this was the first time I could tell I had been chewing on my tongue.

The paramedics start loading me onto a stretcher, I explain that my brother is here, he was my ride, and the hospital is across the parking lot. I protest that I really don't want an ambulance bill but all the doctors in the room strongly suggested I go with the paramedics. I was literally too out of it to argue.

At the hospital everything comes back normal, but since this has happened before, they wanted to put me on anti-seizure medication. The ER doc is staring at my chart and actually said, "I can put you on Keppra, but it does have a lot of side effects...but you take gabapentin already and THAT has a lot of side effects. This shouldn't be too different." I thought he meant drowsiness since that's the main effect I have with gabapentin. No.

Immediately after starting Keppra, I could tell my brain was firing differently. Right away I started having intrusive thoughts - what's the point of anything? why am I even trying? I should just end it all.

The rage I felt all the time, I literally didn't recognize myself during these angry moments. I could not control myself. I hated everyone and everything.

I had an appointment with my PCP right after the hospital. I told him, I can't stay on this medication. He said I have to see my neurologist but I can't quit cold turkey, that could cause more seizures/problems. I see Neuro about a month later. He takes the dosage down by half, which I appreciated but it wasn't enough. I saw my psychiatrist, she couldn't change it, my therapist couldn't change it. I called Neuro again and the soonest appointment they had was 5 months away.

I lost it. There was no way I could live with my brain like this for that long. I was going to end up hurting myself or someone else. I checked myself into a psychiatric hospital.

Once you go to a place like that, they don't just let you leave. I thought they took my insurance but apparently they didn't. Plus with my medical condition, they didn't really know what to do with me. I needed access to my ankle braces but I need to wear them with shoes. In a psych ward, they take away your shoe laces and without my laces, the shoes wouldn't stay on my feet.

They called an ambulance and relocated me to a psych ward that was inside of a hospital. They were better equipped for someone with disabilities. I spent a couple days there. They got me off Keppra, now I take Lamotrigine and everything is much better. I was able to schedule a follow-up with their Neuro doctor since I still couldn't get in early to see mine.

Insurance helped me pay for all of this of course, but I still paid over $600 for this entire experience. For something that was out of my control. Even for the ambulance ride that I was required to take.

Being sick isn't fair, but how is any of this fair??

And no, the iud was never placed.

[cidpmemoir]

When you think about sickness, you probably think about becoming sick, then either dying or getting better. There's some sort of ending.

With chronic illness, there doesn't seem to be an ending. If there is some sort of ending, it just turns into another beginning of a new problem.

The pain, the discomfort, the sadness and anger, it never stops.

[cidpmemoir]

Wake up around 5am drenched in sweat. Literally peel my shirt off of me and grab a new one. Lay back down on a damp pillow, damp comforter, damp sheets. I can't wake my sleeping partner, so I just try to go back to sleep...but my skin is sticky, my hair is disgusting, matted, and sweaty.

With the covers off of me, I'm freezing. It's better with them on, but there is no way I'm able to go back to sleep under these circumstances.

That's unfortunate because waking up sweating is VERY exhausting for no reason at all.

If I get up, I need to shower. And showering is an even more exhausting activity. So I'm just laying here, trying to decide what to do.

There's no winning with chronic illness. I start my day like this most of my days. Waking up on the wrong side of the bed is a daily occurrence for people with chronic illness.

The crazy part is aside from writing this post, no one would know..this is such a normal part of my life I wouldn't even mention it to anyone.

[cidpmemoir]

Reminiscing on how far I've (had to) come

Today is my last IVIG treatment for the moment. I'm thinking about when I first started doing this. I hated needles. When I first started they would leave a port in my arm since I would come back the next day. They did this so that I wouldn't have to be stabbed twice. I didn't mind because they ruptured my veins so often just trying to get it in the first time. But I do remember having to be really careful with my port. Careful with my arm. It wouldn't matter, it would get snagged and leave a giant bruise. I remember the shame I felt as people would see the bruises and snide thinking I was abused or shooting up.

I remember having to take pills before treatment. Just pre-med's for the oncoming headache that you get treatment. I was so bad at swallowing pills. especially with water! idk why lol ever since I was a kid, I would have to swallow pills with food otherwise I would choke. But there I was in a doctors office with a nurse staring at me to swallow multiple pills. It was so embarrassing lol.

Now, I can swallow 3-4 pills at the same time. I never mind getting stuck with needles. I dare anyone to say something about my bruises. I wear them as a badge of honor to show that I'm still choosing to try.

In the beginning, I was trying to reach the end of my CIDP. I was treating it like there was some kind of finish line. But there's not. It's a marathon. Some parts are easier than others. Some parts are so difficult, I can't keep going. But I get back up eventually.

The difference between before and now, is that I know how it ends, and I am not in a rush to get there. I'll equip myself with the tools, techniques, knowledge, and habits to make my life easier. I adapted to needles and pills. I will keep adapting.