Everyone Has a Story

When I worked for Ford we had a training in which they showed us a video made by “Chick-fil-a” talking about how everyone has a story you don’t know anything about (posted below). I was reminded of this video earlier when someone on my facebook feed posted about women leaving the house with their hair not looking brushed. Honestly, my first instinct was to be mad and get defensive, I even cried a little bit. Since becoming ill I can no longer care for my self or fix my hair like I used to. Being 100 % honest my hair is only washed once a week and then only combed through if I redo my ponytail/bun that day. My arms hurt, scalp hurts, water hitting me in the shower feels like needles sometimes. Growing up in the South where “Cleanliness is next to Godliness” comments about lack of hygiene seem to cut a little deeper. Now that I’m sick I feel the need to speak up for others like me that may be struggling with an invisible illness. I know I can’t change how society thinks as a whole but I can hopefully make a difference to some……

But……….. in saying this I realized I need to have an attitude adjustment myself. Everyone does have a story and I often times forget that.

Instead of just moaning and groaning about how bad the smoke has been ( but seriously it’s bad, yesterday’s news talked about how the air quality is equivalent to smoking 7 cigarettes ), I could spend more time praying about the ones who’ve lost their lives and homes to these fires. I thought about this in length last night, so many fires. So Many. Why aren’t we talking more about this in the news? Instead of getting upset and crying to myself, I could hope that peoples eyes are opened to how tiny little comments said on Facebook can affect someone. Instead of griping about how Netflix’s new show “Afflicted” harms the Chronic illness community I can speak up about my own story (to the appropriate channels) and be an advocate for those whose illnesses have progressed much further than mine and can no longer speak or write themselves. I often feel helpless and that I don’t contribute much to society but I know that just the depression talking, I can’t do much physically or monetarily to help I have a lot of time on my hands in which I can pray.

My attitude adjustment won’t happen overnight just like watching this video won’t change everyone’s way of thinking but maybe even if it just for today it can help make a difference to someone.

Everyone has a story.

What I Do Wednesdays- Not Real Estate Addition

I’ve been procrastinating writing my “what I do Wednesdays post this week. Partly because the answer is not much and partly because I’m embarrassed and still very much in my head about most of it. I spent hours reapplying for disability because I’m a procrastinator (thanks Mom) and too late to appeal, went to dog park a few times, went to the grocery store, and the rest of the time I’ve just been trying to stay cool (if you are in Texas and rolling your eyes because you know it’s only 85 up here and 110 there, just remember heat intolerance).

This weekend we went to go visit my BFF and her family at their new place in the PNW. I’m always so refreshed after seeing her! Besides my family, she’s one of the people who knew me way back when( 5th grade) when I was healthy, fun, and before the cloud of depression fogged up my life. The best part about her and her husband is that they let me dream and dream big. They run their own businesses and work hard so they can live life on their terms. They’re always encouraging of my own adventures and want me to do the same.

Real estate had been on my mind a bunch in the past 6 months. I need a way to make money, from home or an office but not have people rely on me. Because of my health, I never know how I’m going to feel each day and it can change so quickly and decided real estate was the way to go. So after some tax money came into my life I spoke with Steven and came up with a plan. I knew we were visiting them soon so in true best friend fashion I spent the weekend picking her brain about what she thought and if I could do it! I daydreamed, giggled, and we talked about ideas for the future. As always she was 100% supportive and just told me to do what I love! Steven said the same thing!

Perfect I thought! I was ready to start school, I snappchatted my friends, & I even got a planner! A weekend with her was just what I needed to get myself in gear! Of course, I’m fast forwarding through all of the parts about me talking to a few companies, researching tons of schools, reading a few books, articles and YouTube videos. I had this great plan to wait and not tell my family until was finished and had my license! Surprise! I did something with my life! Being the only one in the family without a degree I put a lot of my pressure on myself to impress them. So Sarah Carpenter Realtor was going to make them proud

But…..

I seriously could not bring myself to punch in my credit card information. I’d been thinking about this for a while and praying hard so surely this was what I was supposed to do, it had to be God’s answer to our prayers about finances and what I’m doing with my life.

But no, I kept getting sick to my stomach.

I waited until Steven got home and proceeded to pour my heart out about how I was feeling and what I should do. Was this really what I “loved” or did I just love the idea of being financially stable and contributing to the world? What do I even love besides my dog, traveling, and food? Was being a Real Estate Agent really they only way to obtain those things?
I finally realized and agreed that my mom was right and I really do have ZERO interest in real estate besides wanting a home and wanting to be the Property Brothers. I should focus on trying to find something that I enjoy doing even if I can only make $1 a month.

That’s the thing. What makes me happy? What do I enjoy? I’ve always struggled with what I wanted to be or do! I’ve wanted to be:

On Broadway
A veterinarian with a specialty in Poultry
An Ag teacher who volunteered with musicals
Worship Leader
Plus size model
Pallet sign maker
Phone screener on the Bobby Bones Show
Writer
Psychologist
Boss lady at an emergency clinic
……
The list goes on.

I’ve realized in the process of writing this blog post today, that I just want to be okay. While I would enjoy doing any of those things they aren’t in the cards right now. All I need to focus on right now is being the best daughter, girlfriend, sister, friend, “Aunt” Sarah, and dog Mom I can be.

So thanks for tuning into another “What I Do Wednesdays” guess it’s not real estate edition!

WHAT I DO WEDNESDAYS

“We all go back to work tomorrow” someone recently said, “all but Sarah”
I was surprised at how much this statement really got to me even though I know no harm was meant by it. It’s been well over a year since I stopped working, with the exception of the month I went back, but then ended up in the hospital again. Why am I still bothered by comments like this? Why do I still feel the need to defend myself or what I do all day?

My fear is similar to most people I’ve talked to: that people just think we’re lazy. Many people I’ve spoken with since I started this journey really are full-time patients. I loathe the question of “what did you do today?” because my gut reaction is to say “I tried to stay alive and not cry.” Let me tell you, people don’t like that answer. Sometimes the truth is hard to handle, especially those who don’t have a foot in this “world” of chronic pain and illness. So instead I usually go with something positive like “I got out of bed” I drove UberEats” I took the dog to the dog park” I leave out the rest. All the ugly parts about not showering, crying in the car at the dog park because I just don’t have the strength to walk all the way up there, the days I don’t actually get sonic there and use my walker to make it halfway around the block, or the fact that I don’t ever think I’ll be able to get the dishes and laundry all done at the same time or even in the same week.

I’ve been thinking about how I can do my part in changing the narrative for those spoonies like me. I don’t want to keep feeling ashamed or guilty when it comes to my health and lack of work. I want to start being 100% honest about what I do each day. So I’m going to try to start a new blog series called “What I Do Wednesdays!” Every few Wednesdays I’ll post exactly what I did for a few days that week.  

Monday, July 9th
8:30               Got out of bed, fed dog and put on clothes, vacuumed straightened up and started webinar on social media & graphics 
10:00            Took Sonic to the Dog Park- only lasted 30 mins
11is-1ish     Drove for UberEats and went to grocery store. Walked, didn’t use the cart.
2ish-5:30    Took a nap
7ish                Cooked dinner put up dinner, walked halfway around the block with Steven and Sonic. At this point in the day, I was                                     done, exhausted, going to the store alone is one of the hardest and most painful things I can do
10 ish            Went to bed

Tuesday, July 10th
10:30          Woke up after a bad painsomnia night, finished webinar
11- 1ish     Drove for UberEats
2ish             Got in bed to rest and read and fell asleep
5:45            Woke up and started cleaning the kitchen
6:30            Got in the bathtub. Hot water, essential oils, & Epson salt with an ice pack on neck and fan blowing in bathroom
7:40            Finished cooking dinner
8-10           TV, Blog, social media, and wind down
10ish          Bed

Do any of you struggle with this too?
Join me and create your own What I do Wednesday and link it here!!

A few months ago I got the bright idea to change up my blog and focus it more on helping those with Chronic Illness like me. I’ve done hours of research, training videos and blogging courses. I want so badly to be a influential writer, especially to those hurting like me. To be honest I also hope that one day I can monetize my blog to help off set the income lost by me being sick. Yesterday I wrote a post that was only 75% me though. Writing about my experiences with crashing was easy- trying to transition to selling items with amazon links was not.I took a course on instagram branding last night. I got so overwhelmed I shut my computer and went to bed defeated. I feel so lost in that word, I’ve always been the creative type but never had the ability to execute! So please bare with me as I fumble through social media and writing courses in hopes to better my hobby!

The Crash

I’m writing this in bed with the AC running even though it’s 75 outside. Its been a few days since I’ve showered, the laundry is in various piles on the floor and dishes piled high in the sink. My pantry shelf just gave in spilling all of our canned goods in the kitchen floor but am in too much pain to pick them up, scared that if I get in the floor I’ll have to stay there until Steven gets home. Sonic hasn’t been to the dog park in a few days because I’m too dizzy to drive. My increasingly swollen lymph nodes hint that my EBV has reactivated and intensifying symptoms have made it clear that I’ve crashed.I’ve been able to sit quietly and think and reflect on the past week or so. I am so so thankful I got to go and have a “normal” vacation. I completely wore my body out and pushed it to the limits though. I knew the crash was coming. Dr. S warned me and we took some precautions, even double up on antiviral supplements, but this seems to be what my life will be like now….. A roller coaster of ups and downs.ME/CFS is commonly known for the presence of Post Exertional Malaise, fibromyalgia patients have various terms for it including the push-crash cycle, flares and more. Basically, you are in this never-ending cycle of feeling good, overdoing it and crashing. PEM causes extreme exhaustion and can bring about symptoms that are more intense than “normal” leaving some bedridden for days. The activity level ranges from person to person, for some it could cause problems after an intense workout, others a big trip, or even the smallest of things like a walk to the mailbox, or a shower.The interesting thing for me is that I would do it again in a heartbeat. The past year I didn’t do much for fear of the crash, too long at the dog park would take me out so getting on a plane would for sure cause serious damage. While I feel like the roadkill squirrel my dad pretended to cook, seeing my family was worth it! Watching my little brother marry the love of his life and getting to reconnect with my sister brought me so much Joy!!
I even felt like a normal person for a few days because I took the time to prepare and make necessary adjustments! Here are some things that made my trip easier!Use a mobility aid and/or request assistance at the airport. My walker was a great asset to have when needing to sit down in the long security lines. It’s easy to request assistance at the airport or when you book your flights, the service is free, you just have to ask.Pack essentials in your carry on, or in a bag that’s easy to access. Because of my heat intolerance, I made sure I had cooling products in my carry on and easy to reach when we were on our long road trips. After using them so much on the trip these products have a new permanent home in my purse.
Chilly Towel- these are great! just wet it and go! 
Personal Fan– This saved me on a hot crowded flight, it was so bad I had to ask for a makeshift ice pack. I placed the fan on top of the ice to make it cooler, like a tiny A/C unit in my middle seat!

Young Living Lavaderm Cooling Mist
This stuff works wonders, I mainly used it at night to help with hot flashes but it proved useful in 107 degree heat!
For more information be sure to check out the Essential Oils tab above! My Oil Hub is the best place to find information and get started.What are some of your go-to tips for avoiding the crash or flares with traveling or big occasions?

Will’s Wedding and Vacation

As many of you know Steven and I recently went on vacation!!! Flew to Austin, drove through Waco, picked up Beverly in Dallas, drove to Kansas, did wedding stuff, drove to Papa’s, surprised Abby,  took a trip to the Beach, hung out with Grandma, flew home, picked up Sonic, then ended with Steven’s Uncle Rons wedding!

Here are some highlights from the trip!

My love feels like home

Ive been watching way too many Hallmark and Lifetime movies this holiday season. Its made me reflect on my own love story.
I could tell you all about the online dating, the nerves, me walking to a Red Robin because my car broke down and my phone was dead. Our first kiss on my birthday and the heartbreaking news that not only did I lose my passport; it was expired leaving me to spend Christmas alone. How Steven invited me to spend Christmas with his family, and ended up at the beach. It was Christmas Day, standing on a sand dune looking out at the water that, I realized I loved him. He felt like home. Its been two years since that time and he still feels like home.
Instead Ill tell you a different part of our love story; The part that isnt all merry and bright like a Christmas movie.
Last year the holidays were full of excitement about seeing both sides of my family and getting to introduce them to the man that makes me smile. The nerves and heartbreak of my upcoming hysterectomy were somewhat masked by the excitement of it all. Unfortunately my mind is kind of a jerk and doesnt always listen to my heart. It was full of anxiety and the fear that he would leave once the surgery was done. I felt as if I wasnt going to be woman enough anymore. He didnt leave.
It was after surgery that threw us both for a loop (actually its been more like a crazy roller coaster coming off the tracks). I never got better. We were introduced to the world of Chronic Illness. He held my hand and fought for me while searching for answers. Being undiagnosed for so many months was awful. As it became clearer that my chronic pain wasnt leaving anytime soon, I once again let my mind worry about him not loving me anymore.
I could not have been more wrong. He has held my hand through what seems like hundreds of blood tests and sat hours in waiting rooms. Supporting me while I try dozens of new medications and having to suffer the side effects right along with me. Never complaining about the times I cant get out of bed to make him dinner or having to make sure we have clean clothes. He takes care of me days when I cant care for myself. He has washed and brushed my hair, pulled me out of the bathtub, and some days changed my clothes. He sits in the floor with me while I cry and scream about wanting to feel normal again.
Recently my health insurance switched and suddenly everything health wise was no longer being blamed on “Just fibromyalgia and mono.” We have been thrown back onto the roller coaster and its even scarier this time around.
This Holiday season my heart and mind know that it will be okay, because he is by my side and loves me despite the person Ive become since getting sick.
I doubt our story will ever be made into a Hallmark movie and thats okay. I feel I have a different type of Love, one  that heals, and comforts, and feels like home.

The Hope a new Dr gives

Tomorrow I see a new Doctor. With all the insurance changes and having to get Medicaid I can no longer see Dr. P, my favorite and primary care for most of this crazy journey, or my psychiatrist who finally got the correct combo of meds!!
I have read enough articles, blogs and Chronic Illness facebook posts to know not to get my hopes up but here I am 24hrs away from an appointment, getting excited. TOMORROW’S THE DAY WE GET AN ANSWER AND FIX ME!!It’s this feeling I’ve had many times before. Before the neurologist, MRIs, every blood test, rheumatologist appointments, gastroenterologist and every other “ist” I have seen. Maybe someone will have an idea on how to help me or find answers in a new test.
Chronic illness are different than most, you never want tests to show anything bad but at the same time you want something to show up so maybe the medical community can fix it.
Though I have the diagnosis of Fibromyalgia, along with some other things, it doesn’t mean I’m well or that we actually know exactly what is wrong. I’m still having the same problems and the longer it goes on the more frustrated I get. I still have a plethora of symptoms that can’t be explained by just fibro, some of which are quite scary. Just this week I passed out, fell off the toilet and broke my glasses beyond repair. This isn’t something that exercise and mindfulness can fix. It’s not something I just work through or can blame on my depression.
Something in my body is off, I can feel it.
So here I am being hopeful and praying the Dr says something new or different tomorrow. I know deep down that I’m at the beginning of the marathon that is my new life and no person or miracle medicine can’t fix me…… yet.
I still want to believe that I, like so many others in the chronic illness community, are not forgotten or left to accept a diagnosis without treatment options. We all deserve to have hope in the medical community around us.
So off I go with my medical records, a 2 page list of medications I’m on, and a hopeful attitude.

Disability

I’ve been debating on if I should share this or not but considering I’m awake at 3AM I figured I could use extra prayer.
I have my disability interview tomorrow which is the first step in a very long process that I honestly don’t even want to go through. I never thought going in for surgery that I just wouldn’t recover. It’s been 7 months of battling. I don’t want to be on disability. I want to go back to work, I want to stay awake all day, and function like a normal person, I want to able to function every day without pain.
I recently went to a friend’s wedding, it was the first time I had traveled very far from home, gotten dressed up and was excited about something in a long time. Facebook told y’all that I was doing better, looking better, and sounding better. Reality was different, you didn’t see that I didn’t drive very long, hurt the whole way, needed to nap and rest in the car, or that during the reception the most comfortable place for me was on the ground. I’m sure people were like what in the world is she doing. Facebook doesn’t know how many days I stayed in bed or couldn’t function afterword’s, or how many showers I’ve managed to take in the past few weeks. I’m not saying I didn’t have a blast- it was great to see friends and old co workers and to celebrate a beautiful couple.
Y’all chronic illness is hard, dark and ugly, these days of social media make it harder. I don’t want people to see the part of me that is disabled now so I try and hide it. I only post on good days and try to stay positive . I should be glad if a few of you reading are like wow- she’s fine- not disabled- why on earth is she filing.
I should have filed months ago but was/am concerned about how this would effect foster and adoption in future. These decisions don’t just impact me, they effect Steven, my family, his family, and so on. I already have so much guilt that I can’t give anyone biological children so trusting Google to tell me you can foster while on disability is hard for me.
Trusting God to take care of it is even harder.I’m usually most honest while I blog and keeping with the spirit of that I’ll admit that I’m still at the “Kicking and Screaming” at God phase of this chronic illness battle. I shouldn’t be but I am. When thinking about it, looking at my medical records and discussion with my a few dr’s and therapist I realize that my health started going downhill after having Mono in high school. They tell me I should take comfort in knowing that it wasn’t “just” the hysterectomy or anything I did or could have done to prevent this.
Now here we are- almost 7 months after my surgery and I’m asking for prayer around this. I’m nervous and scared and not too thrilled about what will most likely be a long and drawn out process. Having my interview tomorrow doesn’t mean I’ll get it, and if I do it takes 3-6 months for a decision. This means another few months of hardly getting by and trouble paying bills, my mom and Steven can’t help me much longer.
All that to say Prayers are appreciated.
               Not all Disabilities are visible.