Share Your World: April 24, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

Wanting something to quench your thirst, what would you drink? This is an interesting question, given the fact that I have POTS, which means I take in about 4-5 liters of fluid a day just to be able to stand up. Most of that is Gatorade, with a little bit being water, water with a Nuun tablet, pop, or milk. But of all the beverages I drink every day, Gatorade is the most thirst-quenching for me, probably because my body craves the sodium and other electrolytes.

Complete this sentence: Never In My Life Have I…

Continue reading “Share Your World: April 24, 2017”

A Good Thing

That place still traumatizes me.

Wait, back up. I should start at the beginning.

Yesterday it was finally time for my 7-month MRI following my brain tumor removal last September (and my 7th lifetime MRI at that!) My mom came down a few days ago to spend some time with me while my husband was out of town, and to drive me to my appointments.

I was already stressed out about the day because of the timing. My MRI was scheduled for 9:20 am at a nearby family health center. Originally, my appointment with my neurosurgeon was at 11:40 am at main campus, but last week it was changed to 9:40 am. The office called me and told me it was ok to get there as soon as I could after the MRI. Ok, then…but it still stressed me out because if there is one thing I can’t stand, it’s tardiness. Continue reading “A Good Thing”

Things We Lost in the Fire

“Things we lost to the flame
Things we’ll never see again
All that we’ve amassed
Sits before us, shattered into ash…”

Things We Lost in the Fire (Bastille)

 

IMG_1123As Esther Smith said in her excellent book, When Chronic Pain and Illness Take Everything Away, “Grief is the process by which we actively release all that we feel, question, and remember at the feet of God and the people He has placed in our lives.”

At the end of the second chapter, she poses some questions that have me wrestling with my thoughts, emotions, and feelings towards God. Questioning God isn’t a bad thing. In fact, He encourages us to come to Him with our questions, fears, or doubts. If you’ve ever read Psalms, you know this to be true!

As part of my grief process, I am going to share my answers to the questions, as you all are the people God has placed in my life. I assume the intention of that is to find help through grief from a different perspective than God’s. Continue reading “Things We Lost in the Fire”

2016, In the Style of Personal Journals: March

Way behind in publishing this, but I still want to continue this series.

Last year was a rough year for me due to all the medical problems I had. I poured out my heart and soul into my personal journals, which were my lifeline keeping me somewhat grounded. To give you an idea of what it was really like to go through all that I did, the rest of this entry is only direct quotes from my journals. I plan to do this every month this year. If you want to read the previous months to set the stage, here’s January and February.

Welcome to the inside of my head and heart. Be warned, this is honest and raw.

March 1, 2016: “In other news, I actually got a reply from Dr. F about my lab results…’Well, I think we may have some answers for you! Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause)…This is very different from PCOS and likely reflects a small growth in your pituitary gland (your prolactin was elevated.) This is the most common kind of pituitary growth and is usually NOT CANCER…The next step will be a head MRI (I see you had a normal CT). As long as the pituitary gland looks as expected, we can start a medicine to bring down your prolactin levels and you should start cycling again and be able to get pregnant.’

“So I guess I might have a ‘brain tumor’ after all. I had a feeling this whole time that something wasn’t right in my head.”

March 4, 2016: “Next winter. A point at which I will still be childless, if pregnant at all yet. Which is sad to think about considering everything I’ve been through lately. A few months ago we were so sure that it would be this year.”

March 8, 2016: “I just don’t know what I’ll do if [the MRI] is negative. Given my labs and headaches and other symptoms, I feel like there has to be something there. I pray that there is, because then it can be treated and then hopefully my headaches will go away, I’ll start ovulating, and then be able to get pregnant naturally. No Clomid or anything like that. And we’ll have a beautiful, healthy baby next winter or spring. Even summer would be ok. I just hope to be pregnant by the end of 2016. And everything will be awesome. Life is going to get better.”

March 9, 2016: “‘6 mm area of diminished enhancement in the pituitary gland suggestive of a prolactinoma.'”

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March 12, 2016: “The tumor. I have a brain tumor. I really, actually, truly have a brain tumor. I’m still having difficulty wrapping my mind around that. Just because it’s not cancer doesn’t mean it’s not still affecting my life tremendously. I mean, I missed four weeks of work in two months because of the headaches. And if the medication doesn’t work or I can’t tolerate the side effects, I’ll likely end up having surgery.”

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Evil, expensive drug…

March 15, 2016: “Dr. F is starting me on cabergoline twice a week.”

March 17, 2016: “I’m still having side effects from the cabergoline. The headache wasn’t nearly as bad today, but I still needed Percocet to control it. Today I really noticed lightheadedness upon standing. Still a little nauseous, too, but not nearly as bad as yesterday. I have to admit, I’m still a little overwhelmed with this diagnosis. And as far as the cabergoline is concerned, how long do I try to tolerate these side effects before I just throw in the towel and pursue surgery? But will the med have shrunk the tumor enough that…I have to go off the med and let it grow back? I can’t imagine having to go through all of this again. I can’t do it.”

March 19, 2016: “I was reading another post where someone asked if the tumors ever really go away (are you ever fully ‘recovered’) and if there is light at the end of the tunnel. So far 27 people have responded with a resounding ‘no.’ Well that’s just fantastic. I’m frustrated now. Frustrated that this could turn out so much differently than I thought last week…I’m a walking disaster. Seriously, could things get any worse? (Shut up, of course they can. Don’t tempt fate with this health of yours).”

March 24, 2016: “Stupid amitriptyline. Dr. L had said it can cause nightmares at lower doses. I remember him asking me in the ED a month ago when I was taking 30 mg if I was having nightmares and actually, I was. And they did go away when I went up to 50 mg, for the most part. But now they’re back in full force since I decreased my dose last week. I can’t stand the nightmares. I can’t stand the urinary retention. I can’t stand the twitching. I don’t know how anyone can even tolerate the higher doses used for depression. Any higher dose and I would never pee again.”

March 25, 2016: “I can’t miss any more work. I can’t keep letting everyone down. I want that phase of all of this to be over…I’m sure they’re all sick of hearing about my health problems.”

March 28, 2016: “I just want this to be over. I want to feel like a normal human being again. But I don’t know what I have to do to get there. It’s not like I can slack off at work; that would make things more stressful and that’s not how I roll. Calling off would probably also stress me out more in the long run; some of the worst days I had psychologically two months ago were days I called off and it was the calling off that stressed me out.”

March 30, 2016: “All of a sudden I feel so overwhelmed. And nauseous. And…I don’t know, just not right. I don’t like feeling this way. I don’t know what’s wrong. What’s wrong? What’s wrong? Why do I feel like this? What’s wrong? I’m freezing and shaking. I don’t feel good. I don’t feel right. I’m nauseous. I don’t feel good.”

💛ribbonrx

 

 

Migraine Prevention from Axon Optics

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Disclosure: This is a sponsored post. I was not compensated monetarily, but received the glasses to review. The opinions are entirely my own.

I had my first migraine when I was 13 years old. Thankfully, through my teens and twenties, they weren’t all that frequent, with weather changes, light sensitivity (particularly sunlight and fluorescent light), and stress being my primary triggers.

But that all changed in 2016. Continue reading “Migraine Prevention from Axon Optics”

Share Your World: April 10, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

Have you ever participated in a distance walking, swimming, running, or biking event? Tell your story. Well, I suppose it wasn’t a “distance” event in terms of how that term is usually used. But in March 2015, I took part in the 2nd Annual Worldwide EndoMarch in Washington D.C., an event that also occurred on the same day in dozens of cities throughout the world. This event raises awareness for endometriosis, a painful condition which affects 1 in 10 women worldwide, which I happen to suffer from. The march itself is fairly short, given the degree of pain many of the women are in. I haven’t been able to participate the past two years for other health reasons, but the one time I went was amazing! I did not know the ladies I’m pictured with below before the march, but we found each other as members of our home state and marched together!

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Continue reading “Share Your World: April 10, 2017”

Nocturnal Musings #21: A Conversation

A lot of people find it hard to believe that God still speaks to us today. But He does. Not in the way He used to in ancient times to the Prophets; if I heard a deep voice bellow my name out of thin air, I think I’d have a heart attack right then and there!

But if you are listening and honestly seeking Him, you can hear Him if He has something to say. My former youth pastor, John, said it like this: “You know how when you’re in a loud, crowded room, and you hear someone you know really well call your name, and you know it’s them without having to turn around? That’s what hearing God’s voice is like. You know it’s Him.”

I have also found I know when the Lord is speaking to me when I’m thinking a question and the answer is given (in that recognizable voice), while I’m still thinking, before I’ve even finished thinking the question. You can’t think two thoughts at the exact same time.

I had such an encounter tonight. I wasn’t going to share this, because it is a private journal entry, but I feel like the Lord wants me to. So here’s the entry in its entirety, with no edits. Continue reading “Nocturnal Musings #21: A Conversation”