‘Twas the night before Ketamine

My first ketamine infusion is tomorrow. Seriously,  thank you all for your prayers and donations on the GoFundMe page. We haven’t made our goal but have enough for the first two infusions and since I can’t seem to get out of this flare, depression, and pain wise, we are just trusting The Lord and going for it.

My anxiety is on overdrive. (when did anxiety become buzzword) Last night I made Steven take me for Mexican food so I could eat my feelings, followed by a walk around Hobby Lobby. It sounds silly but I needed to read all the inspirational stuff, to hope for the future, and to get excited about Christmas decorations.  I don’t know what I’m more afraid of…. The infusion therapy working or it not.

I’ve put all my eggs in this one basket so to speak so if it doesn’t work I’m back to square one. When you’re chronically ill you must accept the fact that sometimes you aren’t going to get better. The pain will always be there, the fatigue will always be there. You can try to manage the symptoms but things won’t be the same. I know that these infusions wont cure me, only help my symptoms but if these work it will be the closest thing to “normal” I’ve felt in a few years. So if it doesn’t work I’ll be somewhat devastated since we have exhausted ALL available options for treating my pain.

If these do work it will come with its own set of worries. How long will it last? How can I pace myself? Can I work again? If so doing what? Where? Will it help my depression? Can I stop taking so many meds? I’m currently on 3 antidepressants, a mood stabilizer and an anxiety medicine…….just to try to control my depression.

I remember very vividly telling my mother I wanted to go walk around Walmart following my colonoscopy with the ketamine. We got out of the car and I saw Mt. Rainer in a way I’d never seen before. It sounds crazy but the fog and fuzziness I had been experiencing for 10 + years seemed to be lifted.

I don’t talk about how bad my depression is most of the time. I’ve always been open about it and my anxiety but usually I keep details out. I admitted to Steven, Mom, and my bible study this week that it may be time to look at hospitalization if nothing changes. Something I have fought hard to keep off my medical record because of future adoption stuff.  A couple weeks ago when it first started getting worse, I basically showed up at my best friends house and made her and her family hang out with me. I couldn’t tell her(or anyone) the pain was so unbearable that my meds weren’t’ working. I tried so hard to forget that I was sick that day.

I guess that what I I’m praying so hard that these infusions will allow me to do ….let me forget I’m sick for just a little bit

Allow my body and mind to have some time to breathe. At this point even if it’s just for 24 hours I feel it would be worth it.

Shower and Leave

Leaving the house and showering have become increasingly difficult. I wish I could say if it’s the pain or depression making things so bad but it all seems to be running together lately.

I went to an appointment yesterday, the sun was shining, the rain had stopped and it was cool enough outside I wasn’t drenched in sweat by the time I got home. I really thought getting out would help. It didn’t. Actually seems to have made things worse on the fatigue front. 

Since getting sick, I’ve had a love-hate relationship with the water for sure. Ask anyone, showering is one of the most exhausting things to do when you are chronically ill. Then when you add the pain the water causes its just easier not to shower, unless absolutely necessary. Baths with epsom salt, a fan, ice pack seem to do the most bearable. My hair has been falling out pretty bad lately, it’s either the new antidepressants or the mono wreaking havoc on my body.

Tomorrow I will have to leave the house and go to a work function with Steven. I feel so silly that its Friday night and I’m writing (to calm my anxieties) about showering and leaving the house.  Oh well, here to a Saturday not on the couch no matter how I feel!

Depression

It’s been so long since I’ve blogged. I wish I could blame is all on my illnesses but this hiatus has probably been more from my depression than a flare.

I started some new anti-viral therapy to help with my EBV & CMV. Let me tell you, it’s been rough! As rough as it’s been I think it’s working, some days I think I can feel my body battling.

That being said I think it’s messing with my depression medication. Because of insurance stuff and how hard it is to jump through behavioral health hoops it took me longer than expected to see a new psychiatrist. (mine retired)

As easy as it is for me to talk openly about my healthy stuff, hysterectomy, and life, my depression is one of the harder topics!

My hope is to keep blogging about my experiences with the antivirals. I also have a cool new medication app I’m trying that some of y’all may benefit from!

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!