One of the worst feelings you can experience as a chronically ill person is invalidation. It’s not necessarily that others don’t believe you (although that is also a tremendous problem and a discussion for another time), but that they either don’t see or don’t understand how much your illness(es) impact your daily life. Especially when mental health plays a role in your battles.
And what makes it even more frustrating? When that invalidation comes from healthcare professionals. When, to their eyes, you “don’t look sick” enough or you don’t have “enough” chronic illnesses or you’re “too young” (no matter how thick your medical chart) to warrant feeling depressed.
I’m not quite sure I’ve gone this long without updating my blog before, even after my multiple surgeries last year. This week has been a weird one, though, and I just haven’t felt like writing. Probably because of my rebellion that kind of ended up going sideways.
Hubby was out of town presenting at an emergency medicine conference in Orlando, so I’ve been alone with the cats all week. They’re used to me being home all the time, but not to him being gone. Surprisingly, I didn’t oversleep any of those days, except perhaps today.
But last week, I just suddenly got so sick of being sick. I wanted to pretend that I was normal. Or maybe I was trying to convince myself that I’m not as sick as I appear to be. So I rebelled.
“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)
As 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”
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 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.
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 January first to set the stage, you can find it here.
Welcome to the inside of my head and heart. Be warned, this is honest and raw.
Trigger warning: depression, discussion of death
February 3, 2016: “Basically, I can’t think of any convincing reason to stay alive…Maybe, if I’m lucky, I have a brain tumor. Although the chances of that are basically zero. I’m sure these headaches are just due to significant stress…Although I’m not saying that I don’t still want to die. It would be the most excellent release from everything I’m going through.” Continue reading “2016, In the Style of Personal Journals: February”
I love fun stuff like this. It’s distracting me from the hell hole that is my life lately. Thanks Dangerously Normal Spoonie for the idea!
1. What’s your favorite candle scent? North Pole from Yankee Candle.
2. What female celebrity do you wish was your sister? Emma Watson
3. What male celebrity do you wish was your brother? Tom Hiddleston (seriously, he’s only four years older than me.)
4. How old do you think you’ll be when you get married? I was 24 when I got married, which is about how old I expected I would be.
5. Do you know a hoarder? Not as bad as on the show, but my husband is definitely a hoarder.
6. Can you do a split? Yes. I’ll have you know I haven’t stretched in two years and didn’t before taking these pictures just now.
7. How old were you when you learned how to ride a bike? I think about five?
8. How many oceans have you swam in? Umm…Atlantic, Caribbean, Mediterranean, and Adriatic. So four.
9. How many countries have you been to? I think eight…(excluding the U.S.) Canada, Honduras, France, Italy, Monaco, (is Monaco its own country?) Germany, United Kingdom (including England, Wales, and Northern Ireland), Republic of Ireland.
10. Is anyone in your family in the army? Nope.
11. What would you name your daughter if you had one? Alexis Ruth
12. What would you name your son if you had one? Jacob Daniel
13. What’s the worst grade you got on a test? F. Very, very F. (In the apt words of one of my uncle’s college professors, “Oh, you don’t get F, you get F minus!”)
14. What was your favorite TV show when you were a child? Adventures in Wonderland and Saved by the Bell
15. What did you dress up as on Halloween when you were eight? That would have been second grade…a black cat.
16. Have you read any of the Harry Potter, Hunger Games or Twilight series? Yes. I loved and need to reread Harry Potter. I need to finish Hunger Games (only finished the first book). And I need to set fire to Twilight.
17. Would you rather have an American accent or a British accent? British. It’s in my royal heritage, you know.
18. Did your mother go to college? Yes.
19. Are your grandparents still married? They’re dead.
20. Have you ever taken karate lessons? No
21. Do you know who Kermit the frog is? Of course. If you don’t, I don’t want to imagine how tragic your childhood was.
22. What’s the first amusement park you’ve been to? Seabreeze! (Twelfth oldest operating amusement park in the world, fourth oldest in the U.S.)
23. What language, besides your native language, would you like to be fluent in? Spanish
24. Do you spell the color as grey or gray? Gray
25. Is your father bald? Getting there.
26. Do you know triplets? Not personally.
27. Do you prefer Titanic or The Notebook? Neither, although if I had to pick one, The Notebook.
28. Have you ever had Indian food? Who hasn’t?
29. What’s the name of your favorite restaurant? Revolution Pizza (best gluten free pizza anywhere!)
30. Have you ever been to Olive Garden? Too many times.
31. Do you belong to any warehouse stores (Costco, BJ’s, etc.)?Sam’s Club
32. What would your parents have named you if you were the opposite gender? Kevin Charles
33. If you have a nickname, what is it? Bootie
34. Who’s your favorite person in the world? My hubby, David.
35. Would you rather live in a rural area or in the suburbs? Suburbs.
36. Can you whistle? Eh, not really.
37. Do you sleep with a nightlight? We have one over by the bathroom door that we put there while I was recovering from knee surgery so if I needed to crutch to the bathroom in the middle of the night, I could see where I was going. We just never got rid of it. But it’s pretty much hidden by a dresser, so you can’t see it until you’re right in front of the bathroom door.
38. Do you eat breakfast every morning? Nope. Stopped doing that when I was 12.
39. Do you take any pills or medication daily? HAHAHAHAHAHAHAHAHAHAHAHAHAHA! Yes. Ends up being about 30 pills daily.
40. What medical conditions do you have? Sigh…Endometriosis, adenomyosis, celiac disease, infertility, major depressive disorder, anxiety, episodic migraines, hypothyroidism, pituitary tumor (prolactinoma) that was surgically removed and had better not come back, left internal carotid artery aneurysm, dysautonomia, orthostatic intolerance, moderate hypovolemia (I don’t have enough blood, but I’m not anemic), and “very severe” venous pooling, both of which indicate POTS (postural orthostatic tachycardia syndrome). And I might have Ehlers-Danlos Syndrome; I have an appointment with a geneticist in a few weeks.
41. How many times have you been to the hospital? I work at one and trained in many, so I’m going to assume this question means as a patient. So then…15, to the best of my knowledge, including emergency room visits, admissions, and procedures or surgeries. That excludes appointments.
42. Have you ever seen Finding Nemo? What person in their 30s hasn’t!?
43. Where do you buy your jeans? New York and Company
44. What’s the last compliment you got? A comment from a lovely reader on my blog: “Thank you so much for such an informative post on brain fog. I know I get it a lot and it drives me bonkers. Reading your experience makes me feel less alone!”
45. Do you usually remember your dreams in the morning? Most of the time.
46. What flavor tea do you enjoy? Lady Gray and English Breakfast.
47. How many pairs of shoes do you currently own? Too many. I only wear about seven of them.
48. What religion will you raise your children to practice? Jesus is my Savior, not my religion.
49. How old were you when you found out that Santa wasn’t real? I think I was about 7 or 8.
50. Why do you have a Tumblr? I don’t. I just copied this list from someone else!