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.
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”
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.'”
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.”
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.”
I’ve always been a difficult person to be friends with. And I’m not easy to love.
Although life didn’t start out that way. One day in pre-school, my mom was shocked to see me sitting at a table with all the little boys in the class crowding around me, the only girl at the table. If only I had such admiration ten years later!
In all seriousness, I think a lot of my friend-making difficulty stems from my social anxiety, which started baring its teeth around the age of nine. There were really a lot of people who didn’t like me for reasons explained in that post, and it scarred me for life. I still remember the torment and how it made me feel. I was always the smart one, not the pretty one, and brains didn’t earn you many friends. Middle school and high school were awful for obvious reasons, so I was thrilled to go to college over 400 miles away from home where I didn’t know a soul. Friendships were much easier to maintain there because everyone was starting on a clean slate.
But it’s now been almost seven years since I graduated from pharmacy school. I’m almost seven years into my career. But for the past ten months, I’ve been on medical leave in order to have and recover from three surgeries in a four-month period: hernia repair, brain tumor removal, and aneurysm stenting. However, just as I was about to go back to work, POTS happened, likely as a result of all those surgeries. And having POTS sucks incredibly. It’s not something I would wish on my worst enemy.
No sleep for me. I’ve turned nocturnal again recently. But that’s not the main reason I’m awake right now.
I was awake for 30 hours straight the other day. No idea why, I just didn’t want to sleep. So yesterday I then slept for 20 hours. This got me doubly dehydrated, despite drinking a total of a liter of water throughout the day during my brief awakenings. (Although now my body laughs at such a puny amount of water!) I’ve now been awake for eight hours, but still feel awful. It would probably be dangerous for me to go to sleep now without being fully hydrated. So I’m awake still, trying to catch up.
I’m awake since I feel a bit sick right now. Nausea has become a fairly common occurrence during my days now, likely from all the salt tablets I’m ingesting…and all the food I’m not ingesting. I really don’t care, either.
I can’t predict the future. I don’t know what the Lord has in store for me. He’s started dropping hints again after a week’s silence following what happened just recently, which likely means something is going to happen again.