Tag Archives: Baclofen Pump

Cows: Made for Food NOT Milk

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Hey, you guys! So, I have a few weeks until surgery. Need to gain a little bit more weight before I personally feel comfortable to go under the knife for Baclofen Pump removal. (Permanently this time.) Did you know I was the first person in Arkansas to ever have a Baclofen pump?

Things having an ED Taught Me:

Cows are for meat…not milk (stick to almond, soy and oat.)

Room temperature drinking water is crucial.

Use pepper to season food and not salt.

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Drawing of cow standing in the grass by rain cloud

Spent the first part of the day in bed not feeling well; all because I drank a bottle of whole fat chocolate milk, not everyone in the house I am currently staying in is up to speed on the fact that my body does not need hormones in that type of way and that I need a milk alternative instead. (Although I have told them many times.)

That’s all I really have to say for today. Hope everything is going well for you (whoever you are.) Check out my Instagram by clicking on the logo at the end of this post for more Post-it note art.

-laurenmikael

She’s got a Body like an Hourglass, It’s Ticking like a Clock

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…and beeping.

I know it’s Tuesday, but today isn’t going to be like the usual Tuesday Starts with Tea. I haven’t been in the mood to read lately; which means I haven’t gotten any farther into The Bassoon King. In fact I think am going to have to pick another book soon, and maybe we can come back to The Bassoon King some other time.

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I’ve had a rough few days, my Baclofen pump started beeping this past Saturday….it beeps when it is getting low on medication. Most of the time that means there is still a week’s worth in the reservoir, but sometimes it can differ.

Baclofen relaxes your muscles, so obviously when it’s running low I get tense and more anxious than usual. Everytime I hear myself beep it freaks me out. People aren’t supposed to beep.

When I get tense and anxious I get little or no sleep. Plus, it’s hard to sleep when you beep at least once every hour until you can make it to the doctor, I always get scared I am going to go through drug withdrawal again. (Click the Baclofen pump link above to read about that.)

I was finally able to get it refilled today. I’m so glad; the beeping was getting annoying.

I usually get it filled a few days before beeping even starts, but the hospital made a scheduling error and never notified me of my appointment. I was under the impression that I wasn’t supposed to beep for almost another month…well, clearly not.

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For the first time in my life I was actually a little excited to go to the doctor, because that meant I was getting out of my apartment. I’ve been social distancing for weeks now. Aside from taking out the trash, and grabbing the mail I try my best to stay in.

I’ve tried to not talk or post about Corona virus much…because honestly I’m tired of hearing about it. Every meme you see that isn’t about that Tiger King show (which I don’t really ever plan on watching.) is about Corona. I may be tired of seeing it everywhere, but at least I understand how important it is to take precautions.

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Today when we (Mama and I) were out we wore masks and used hand sanitizer very frequently. (Mama is a nurse so she understands how serious all of this is.) After the appointment we ran another errand. Besides the two of us, we only ran into one other person wearing a mask during this errand, that frustrates me. All of those people aren’t taking this virus seriously. I understand a lot of people don’t have access to actual an actual mask, but there are alternatives you could use: A bandana, or cut up a T-shirt.

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The one masked person we saw today kept pulling her mask down exposing her mouth when she would talk to people. (Um, really dumb…that defeats the whole purpose!) The longer people do stupid things like not wearing a mask, or wearing one, but removing it and touching it while out in public…the longer that everything is going to be messed up and shut down the way it is. I would rather wear a mask and be safe than assume this is no big deal the way a lot of people still seem to think it is. I’m ready to hang out with friends, go to the movies…I miss going to live shows so bad, I need live music.

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Please be smart and stay in unless you absolutely have to get out of the house; and make sure to protect yourself if you do.

-laurenmikael

PS: Baclofen pumps occasionally make a very quiet ticking sound…just like a clock; hence the title of this post. Also, due to scoliosis my body is not like an hourglass. Title comes from the lyrics of Paramore’s “Misery Business“

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Baclofen Pump: Time to get my Batteries Replaced

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Since I have Cerebral Palsy (you can learn more about that here in my About Me page) my muscles are a lot tighter than the average person’s. I’m also very spastic…a loud noise (sometimes it doesn’t even have to be loud) can happen and I would practically get so jumpy that I swear I almost jumped out of my skin. Until I got a Baclofen Pump.

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When I was 10 years old I went through testing to see if my body could handle having a medicine pump to help me deal with these issues.

Turns out I was a match for the Baclofen pump (thank God!) Up until I got the pump, I had constant nerve pain and spasms in my legs, the nerve pain was like constant bolts of sharp, intense lightning shooting through my legs.

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The sad part is, until the Baclofen pump, I thought that was completely normal, I didn’t really know I was different than other people, aside from the wheelchair of course. I honestly thought everyone in the world had this nerve pain and we were all just supposed to just deal with it. Guess what? I was wrong.

Ever since then I’ve had the pump in my abdomen. It’s like a tuna fish can, or a hockey puck. The pump is connected to a catheter that runs up my spine and continuously bathes my spine in medication.

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Now I very, very rarely have lightning legs, and am far less jumpy, my muscles are a whole lot looser than they would be without it.

Every 4 to 6 months I go to get the pump refilled with medicine and the doctor adjust the dosage, if needed. They refill it by giving me a shot in the abdomen, the pump has a tiny rubber door and as long as the doctor hits it in the right spot it, it is easy to refill.

Every 7 years the batteries of the pump have to be replaced. Don’t want to let that slip up. Trust me, I know.

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When I was probably 14 years old the pump I had malfunctioned in the middle of the night. It was such weird timing. My family and I were watching an episode of House, MD in the episode everyone was on an airplane mid-flight, when suddenly they started breaking out in red itchy rashes. My family has always called me a hypochondriac. So, when I started itching at the exact same time as the characters in the show, my Dad didn’t believe me.

Flash forward to about 3:00 AM that morning, I am in the emergency room, going through drug withdrawals, lightning legs and everything. I had to have emergency surgery to have my pump replaced.

 I still tease my family about not listening to me when I first got itchy. I’m never going to let them live that one down. Ha! 

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Ever since that night I have the doctor check my battery percentage, every time I go for a medicine refill. I refuse to go through withdrawal again. It was one of the worst experiences of my life. itching everywhere, non stop…an itch that could not be satisfied with scratching. I remember laying in the hospital bed, praying that God would just let me die. I couldn’t handle it anymore.

So, anyway tomorrow it is time to get my batteries replaced yet again. I am not in any way a fan of doctors, hospitals, or surgeries. I have major white coat syndrome.

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So if you could please send prayers and positivity my way for tomorrow morning. I would really appreciate it. Surgery is at 7:00 AM.

-laurenmikael

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If you liked this post (or my blog in general) a tip/donation of any size would be greatly appreciated! You can update the quantity in your cart to adjust the amount of your tip. Thank you!

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