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.

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?

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.

Healthy Haircut

At this point in this never ending health saga I am absolutely desperate for some sort of relief. Somewhere between the pain and fatigue my depression jumps in and makes everything much worse leaving me in what seems to be a chronic cycle of me just trying to function like a normal human.

Yesterday was ME/CFS & Fibromyalgia awareness day, while I have not been officially diagnosed with either of these or anything at this point ( besides mono…) I do take comfort in the community of people I have found online experiencing the same issues as I am. It’s nice to know you are not alone even though my depression tells me otherwise- I am not the only person in the world with random symptoms, the only one who has to nap after a shower, who’s skin feels like fire after the smallest touch, who can’t seem to be hugged anymore without severe pain, who’s blood results are great yet abnormal at the same time. I am not the only one who is desperate for some relief and knowing that brings the comfort that I cherish late at night and into the wee hours of the morning when I’m left alone with the pain and darkness.
Last night was one of the worsts I’ve had in a long time. I feel like it was trying new medications plus the disappointment of having no answers from the rheumatologist, mixed with a little bit of Mother’s day is tomorrow and the whole childless hysterectomy thing.
So I cut my hair.
I’ve been thinking about for a bit. In preparation for explaining and convincing those closest to me that I’m not being compulsive,  I came up with this list.
MY HAIR HURTS
Why not? It will grow back right?
What if it works? How silly would I feel if cutting my hair helped some of my symptoms where my head is concerned?
At this point my double chins don’t matter.
It’s exhausting to wash it hurts so bad to brush it
It is falling out. I’m so tired of seeing it in the shower, in the sink, pillow. I know cutting it won’t help the shedding but at least it won’t be as long right?
I am aware that I’ve always been on the masculine side and do worry about the short hair but desperation wins this battle. I’ll just have to learn makeup and jewelry to pretty things up Or because I rarely leave the house just deal with it. Looking like my dad should be a compliment 😉