Fighting Back With Love

Recently, I wrote a post that ended up being quite popular within the dysautonomia community. It’s actually been the most popular post I’ve written this year. I honestly have no idea why; I have read it over and over again and can’t seem to find what is so remarkable about it. When I asked my husband, even he said there was nothing profound about it. (Thanks, honey; I can always count on you to be honest. 😊) But whatever it is, I’m still grateful for the 843 hits, plus the 70 Facebook shares thus far. (That’s a lot for my blog, ok?) To those who found it worthy of reading and/or sharing, thank you so much! I hope the post was helpful to you in your own fight, or friend’s or family member’s fight, with dysautonomia.

It was encouraging to me to write because as I reminisced, I realized that I have made some decent progress since I was diagnosed in January as I’ve teased out what works and what doesn’t regarding symptom management. Things are a bit challenging at the moment because my cardiologist has been on unexpected medical leave since April (starting two days before my appointment where we were going to start Florinef) and I don’t see a POTS neurologist until July (after having waited seven months for the appointment), so right now everything is on hold and nobody is managing my POTS at all. So I likely could have made even more progress by now had things gone differently, but I’m just being patient and trying to do my best in the meantime.

But that particular post unfortunately brought up another issue that coincides all too often with posting things of a medical nature on social media: people who feel they have the right to judge you for how you’re handling your illness. Continue reading “Fighting Back With Love”

When Your Depression Is Invalidated

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 have struggled with depression for a year and a half now, starting when infertility problems really came to the forefront of my life. But those issues were usurped by far more serious problems. Continue reading “When Your Depression Is Invalidated”

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”

Share Your World- February 6, 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!

Regarding your fridge, is it organized or a mess inside? An absolute mess. Ever play Tetris with food? Continue reading “Share Your World- February 6, 2017”

50 Questions You’ve Never Been Asked

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.

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Look how he is not touching her midriff. Such a gentleman!

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!

💛ribbonrx

For All That You Have Done

Start humming “Auld Lang Syne.” (Seriously, just work with me here.)

“Your grace will never be forgot
Your mercy all my life
Will be my soul’s forever song
My story and my light…”

It’s easy for me to sit here and bash 2016 for what a horrendous year it was. I’ve already done a pretty good job of that in my personal journal.

I am not yet done grieving the past year and what it did to me. But I would be remiss if I said that nothing good came out of this year. I almost have to grit my teeth saying that, because I want nothing more than to scream and cry and release some serious emotions about this trash heap of a year. But not knowing what is to come in 2017, maybe 2016 can at least go out on a high note.

So what have I gained from all of the nonsense of 2016? What good did I get out of everything I went through? Continue reading “For All That You Have Done”

Top Posts of 2016: Endo and Tumors and Aneurysms, oh my!

As the year is (finally!) drawing to a close, I decided to go back and look at some of my old posts to see how life has changed in the past six months since I started this blog. My goal was, and still is, to raise awareness about certain chronic health issues that affect me, including endometriosis, adenomyosis, infertility, depression, self harm, social anxiety, celiac disease, pituitary tumor, and I guess that pesky little aneurysm.

Here are my top ten posts from 2016, starting with the most hits and working downward. Feel free to re-visit them if you’ve read them before or check them out if you’re new to 💛ribbonrx! Continue reading “Top Posts of 2016: Endo and Tumors and Aneurysms, oh my!”