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!
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!
I’ve been watching way too many Hallmark and Lifetime movies this holiday season. It’s 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. It’s been two years since that time and he still feels like home.
Instead I’ll tell you a different part of our love story; The part that isn’t 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 doesn’t 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 wasn’t going to be woman enough anymore. He didn’t leave.
It was after surgery that threw us both for a loop (actually it’s 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 wasn’t 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 can’t 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 can’t 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 it’s 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 I’ve become since getting sick.
I doubt our story will ever be made into a Hallmark movie and that’s okay. I feel I have a different type of Love, one that heals, and comforts, and feels like home.
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.
I’ve always wanted to be a mom. A stay at home mom actually, it was quite a foreign concept to me growing up. No one in my family was a “homemaker” and the majority of the extended members were divorced and working so the idea of a stay at home mom was fascinating to me.
The hunger grew while I was at Hillsong. I was forced to go to Sisterhood and be around girly things and talk about families, children and everything it is to be a woman of God. I secretly loved it though if you knew me then you would be surprised. It was hard, while in Sydney I had two procedures on my female parts and faced some of the same thoughts and fears as I’m facing now…
As the years went by and I got older I heard the biological clock tick louder. I celebrated with friends through weddings, engagements and birth their babies. Somewhere along the way I let my guard down and actually believed I would know this joy one day too. A few years ago I actually had a dr tell me the cysts in my ovaries were gone, that really allowed me to dream even bigger.
I keep singing I dreamed a dream from Les Miserables. I was trying to explain to my mom that my tears weren’t all about not having children of my own. They are about not even getting to dream about them, their freckles, their births, surprise gender announcements, and fun ways to tell friends and family the happiest news ever.
I’ve been through life, heartache and loss….
I’ve just never had my dreams taken away before.
“I had a dream my life would be So different from this life I’m living So different now from what it seemed Now life has killed the dream I dreamed”
It was 3:18 when I woke up to the sound of my stomach growling this morning. Something I’ve gotten used to in the past few weeks of being on this diet….. or lifestyle change as people keep reminding me. I constantly eat but am never full and always craving something I cant have. Its times like theses that I try find peace in the fact that this is hard and no one expects it to be easy. If it was easy obesity would be such a problem. Alcholohics cut out alcohol, druggies – their drug of choice. I’m not comparing my food issues with a serious illness or addiction but you get the point. They aren’t hit with the temptation everywhere they turn, in their own homes, grocery stores, entertainment etc… I so wish I could cut out food all together but that’s just not an option.
I am currently
Dairy- we all know how much I love cheese
Nightshades ( I bet half of you don’t even know what that is- I didn’t) – Tomatoes, peppers and anything with flavor it seems like
Did I mention all meat should be grass fed (I’m currently not working so this just isn’t an option money wise)
and those are just the big ones
The diet ( I mean lifestyle change) I’m on is the Autoimmune Paleo Protocol which I high recommend to anyone with arthritis, autoimmune, and other inflammatory diseases
There is a half gallon of my favorite chocolate mint chip ice cream in the freezer… Mom was given a glorious box of chocolate for her birthday and then did a crappy job of hiding them ( though she tried). These temptations are all around me. Hello Self Control. I’m so thankful that God provided some money to do this diet with, I haven’t gotten a refund check in years due to student loans but suddenly it shows up. That being said I’m hungry and sick and tired, it would be so much easier to buy some $1 bread and be full than $30 worth of veggies that need to be cooked. I hate to just be venting but its my blog so I’m allowed 🙂
I’ve been praying and have downloaded a few sermons on self control. Self Control is a fruit of the spirit I just don’t have.
Good news is though, its working. The majority of my gastrointestinal issues have stopped- which is a miracle after spending all summer basically in the bathroom. I haven’t actually eaten the ice cream that is in the freezer- I have my $6 a tiny thing of coconut, dairy, soy, gluten free crap right next to it. that most mean some of my prayers are working. Did I put a tiny bit of barbeque sauce on my discusting AIP pulled pork today- maybe. It was better than the alternative though.
I’m learning. This isn’t going to happen over night for me. I’m reversing years and years of bad eating habits. I’m trying though, that should count for something