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The 12 Days Of Christmas: Spoonie Edition

hi my magical ones! its been a minute, huh? hope you all are well tho!!!

I’m back with a very fun post that is holiday themed because its finally December and that means I’m pumping out Christmas music non-stop and basically making everyone sick lol. But I came up with this idea this summer and I have been doodling on it on and off the past few months and I finally finished it and I’m so happy with it! I basically wrote the 12 days of  Christmas: Spoonie Edition as a fun little nod to having a chronic illness during the holidays. My thought is that we need a good little giggle this holiday season!! Please enjoy!

 

on the first day of Christmas my illness gave to me one big dose of chronic fatigue!

on the second day of Christmas my illness gave to me two cases of Sepsis!

on the third day of Christmas my illness gave to me three mood swings!

on the forth day of Christmas my illness gave to  me four cases of painsomnia!

on the fifth day of Christmas my illness gave to me, Five days in the Hospital!!!

on the sixth day of Christmas my illness gave to me six anxiety attacks!

on the seventh day of Christmas my illness gave to me seven blood draws!

on the eighth day of Christmas my illness gave to me eight doctors appointments!

on the ninth day of Christmas my illness gave to me nine new allergies!

on the tenth day of Christmas my illness gave to me ten finger sticks!

on the eleventh day of Christmas my illness gave to me eleven IVs!

on the twelfth day of Christmas my illness gave to me twelve new prescriptions!

but no matter what my illness throws at me, i keep my head up because I’m a FIGHTER!

 

HAPPY HOLIDAYS MY MAGICAL FIGHTERS!

XOXO -Rachel

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I am 1 in 10

I am 1 in 10

Its March and month long, all of Instagram, Facebook and Twitter has been awash of yellow- full endometriosis awareness posts. If you didn’t know, March is endometriosis awareness month and every year; my endo sisters and I take to sharing more about the devastating disease that for many of us controls and ruins our lives.

Endometriosis (en-doe-me-tree-O-sis) is an often-painful disorder where tissue that normally lines the inside of your uterus called the endometrium, grows outside your uterus. Generally, endometriosis is found in the pelvic cavity where can attach to any of the female reproductive organs like the uterus, fallopian tubes, ovaries or on the uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus/vagina, and rectum. Endometriosis can also be found on the bladder, bowel, intestines, appendix or rectum.

Common symptoms of endo are the horrible “Killer cramps”, pain that effects daily life not just during your period, bloating known as the “endo belly”, long periods with heavy menstrual flow, wacky periods with irregular schedules, bowel disorders like IBS, nausea and/or vomiting, pain during sex which is particularly heartbreaking, infertility and chronic fatigue.

The only way to be diagnosed is with a Laparoscopy. I had mine on July 7th, 2013- 5 years ago. Its mind boggling to thing of the things I’ve undergone in those five years when it comes to this illness.

The biggest thing is I learned I wasn’t a failure as a woman. When I started my period at the fresh-faced age of 12 I was suddenly side lined with horrible symptoms and terrible debilitating pain that ruined my life. My moms mother (whom we are estranged from for sooooo many reasons like this) said it was just what women go through and that I needed to “suck it up and stop being so weak” so I did. I suffered in silence for years. Then, when I was in college and I had a found a someone, I discovered that sex was very painful. And I was scared I was broken. Having that intimate moment ruined by gut wrenching pain is devastating. I was still having these debilitating periods and now I was stating to have daily pain and it made sex was a nightmare.

I told a PA in my gynecologist’s office she dismissed it and told me to do Kegels and take Motrin. I remember the defeat as I rode the bus home. The tears behind my sunglasses. But like so many times before I sucked it up.

Then came July 4th. It was my turning point. I had been bleeding for about 12 days. I wasn’t eating because everything made me run straight to the bathroom and that was incredibly painful. I wasn’t drinking because when my bladder would fill up it hurt. But, I sucked it up and helped at my family’s barbeque. It was so hot that day – 110* and I could barely walk. I was so woozy. I passed out carrying a tray of food and My parents called an ambulance.

I was rushed to the hospital and admitted. Dehydrated, scared and in pain, my regular gynecologist came to see me. I couldn’t suck it any longer. I sat and cried to him. Telling him about the years of pain. About how no one listened to me. About sucking it up and how weak I was because I couldn’t.

He stabilized me over the next few days and scheduled a Laparoscopy. I finally had my answer. I wasn’t weak- I was sick. Stage 3 endometriosis. When he told me, I had a flood of emotions- angry, sad, confusion, hurt, relief. Loads of relief.

A treatment plan was put into place and it’s been difficult road the last 5 years. I’ve tried some treatments that made everything worse (Lupron) and some that have helped. I’m still learning how to manage this illness. How to listen to my body when it needs rest, to fuel it properly to avoid flares, how to properly advocate for my own care and be a part of my health care team. But I no longer feel like I am less of a woman. I’m a warrior. I am one in 10 women who suffer from endometriosis.

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2018: the road so far

2018: the road so far

My life has been a roller coaster of emotion the last few weeks of 2017 and the first bit of 2018 & taking the time to sit down and write this blog… taking the time to deal and process these emotions…I’ve cried the most cleansing tears ever.

In December, my mom started experiencing extremely low blood sugars. I’m talking 20s and teens here. This triggered a month long health scare that had her spending Christmas and New Years in the hospital. She would get discharged for no more than a day before being rushed back to the hospital by ambulance. The horror ended with her, in early January, being admitted to C-ICU with a breathing tube for 5 days and waking up with brain damage.

The feeling of not knowing if my mom would even wake up and sitting at her bedside trying to figure out how to say goodbye to her was so painful. And then she woke up and she didn’t know who I was. And I was broken even worse because my mom was still here yet gone from me all at the same time. I remember sobbing violently on the way home, tears falling faster than I could wipe them. Over the next few days she made gradual improvement and was sent home and the real challenge began.

She has been confused and it’s been stressful as fuck when she doesn’t know what’s going on. But around the furbabies she gets that glimmer of her old self back and it’s wonderful but I’m so heartbroken still because I can’t talk to her like I used to. I’ve lost my best friend. I’ve lost the one person who knew me better than I knew myself and I don’t understand how I’m supposed to go on from that loss. It’s a loss that I’m not sure how to cope with because the person I lost is still here.

February has been better. I adopted two rats, Princess Leia and Primrose Everdeen. They are twin 3 month old hooded rats and they are absolutely amazing. Leia is adventurous and bold while Prim is soft, sweet and cuddly. They have brought so much joy into my life.

I’m under so much stress stepping up and taking on the head of household role while also being a caretaker and a chronically ill and mentally ill person. I’m always so tired and I’m so much pain but there’s always something to do.

February is also the time when I would be celebrating my care Bear’s first birthday this month if he hadn’t passed last July and that’s weighing on me particularly heavily right now. I still miss him so much. I’m planning a memorial tattoo of his paw print on the day he died- July 8th.

Health wise, I’m undergoing testing for damage to my liver, pancreas and heart during the month of March and I’m so nervous about it to be completely honest. My doctor changed my depression meds and anxiety meds so I’m not a weepy emotional mess… well 90% of the time that is.

Right now, it’s 3:33am. The house is quiet, I’m sitting at the kitchen table drinking a cup of coffee and listening to the silence and the calm around me with only the gentle tap of my laptop keys to break the quiet. It’s moments like this, that have helped me stay sane in the last few weeks.

Hope you all have a fabulous day/night/whatever wherever you are.

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30 days of blogging- day 30

hi my magical ones! hope you are all well. thank you for joining me for day 30 of my 30 days of blogging! todays topic is what I’ve learned during this month.

This month was so important for me as far as growing as a writer. I feel like I pushed myself to step out of my comfort zone some as I wrote on topics that I don’t typically like to.

Personally, I put self care as a priority for myself. It really made a difference as I was recovering from surgery.

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30 days of blogging- Day 29

hi my magical ones! hope you are all well. thank you for joining me for day 29 of my 30 days of blogging! todays topic is the ways I relax!

Being a spoonie who also cares for another chronically ill person and who is also trying to write a book and maintain relationships can be stressful so I try to have ways I can relax.

My favorite way to relax is to turn Netflix on and lay down and watch one of my favorite shows. It seems to take me to another place and that takes all the stress away.

Another way I relax is adult coloring books. There are so many different ones available now and even Apps so it’s really accessible and fun.

Music is another way I relax. I have a playlist for every mood and I love just putting my earbuds in and singing my stress away.

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30 days of blogging- day 28

hi my magical ones! hope you are all well. thank you for joining me for day 28 of my 30 days of blogging! todays topic is my most embarrassing moment.

When I was in the 6th grade I was running to get to my algebra class and I was late. So I thought I would take a shortcut and run around the side of the building and go in the side doors and maybe get to class on time.

Well, I was wearing these sandals with this elastic band across the top and the toe of the shoe got caught on the sidewalk and I fell face first into a large mud puddle.

Worst part? I still had to go into my math class while covered in mud from head to toe and ask for permission to go call my mom.

My mom and I still laugh about this.

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30 days of blogging- day 27

hi my magical ones! hope you are all well. thank you for joining me for day 27 of my 30 days of blogging! todays topic is my 5 favorite songs.

I am a firm believer that music has the power to change our moods and whenever I need a mood boost I go to these songs:

>Even if it breaks your heart

By: Eli Young Band

>Gasoline

By: Halsey

>H.O.L.Y

By: Florida Georgia Line

>Look what you made me do

By: Taylor Swift

>Live Forever

By: The Band Perry

This list changes really regularly honestly but for right now, these are the songs I’m loving and singing along to the most.

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