Share Your World- March 27, 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!

Does your first or middle name have any significance (or were you named after another family member)? My first name, no. My middle name is my mother’s first name (same with my brother; his middle name is my father’s first name.)

Music or silence while working? It really depends on what I’m doing and what kind of mood I’m in. I have music on right now and I generally do while I’m blogging. But while I’m writing in my journal, I’m a bit more introspective, so I prefer silence. If I happen to be doing anything else, like folding laundry, I like music to be on. Continue reading “Share Your World- March 27, 2017”

Share Your World- March 13, 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!

Do you push the elevator button more than once? Do you really believe it makes the elevator faster? Not usually. There was one particular elevator at work where the buttons wouldn’t light up when you pushed the button on the second floor, so sometimes I would push it more than once…just in case…and sometimes if I had to run to a code on a different floor (and trust me, the stairs would have been slower), I would be internally panicking, so I would take it out on the elevator button. And no, I don’t believe it makes the elevator faster. Continue reading “Share Your World- March 13, 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!

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Share Your World- January 30, 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!

What is the most incredible natural venue that you’ve ever seen in person? The Grand Canyon. I traveled there with family in 2013. We hiked all the way to the bottom and stayed at Phantom Ranch. Getting out was a bit of a disaster for me, but that’s another story for another time…

How many siblings do you have? What’s your birth order? One sibling, an older brother.

If you were a shoe, what kind would you be and why? A pointe shoe. I used to be a dancer.

What is the strangest/weirdest thing you have ever eaten? I’m not a very adventurous food person, so I don’t really think I’ve ever allowed myself to eat anything too strange or weird.

Optional Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up? I’m grateful that I had a few “good” days last week. I’ve worked out a few quirks that enable me to feel slightly better than in previous weeks (but only if my body as a whole decides to behave itself that day.) This involves taking salt tablets and drinking Gatorade in the middle of the night if I happen to wake up, but I’ll do what I have to do.

This week, I am looking forward to trying to challenge myself in new ways to get myself feeling better. The more I figure out about how my body works and wants to behave, the more I can understand how to make it better.

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We Wish You A Spoon-ful Christmas!

Now that Christmas has come and gone, I suppose it’s time to be like everyone else and write about it! I’ll start with Christmas Eve, since that’s when all the action started.

The day began quite horribly. I was still wearing the Holter monitor, and it’s a good thing too, because I was extremely symptomatic. I have never had to try so hard in my life to get off the couch. A lot of it was because I hated the way I felt when I stood up, so I tried to avoid it. At one point I got up to get a snack and wound up having to sit down on the kitchen floor to eat it, because even sitting in a chair would have been a bad idea. The only way I was able to do anything that still had to get done was to drink a ton of water. Meanwhile, I got a message from my endocrinologist (on Christmas Eve, bless her) that the thyroid labs she had ordered the day before (TSH, free T3, and prolactin) were normal, so my thyroid is not causing this issue.

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Get this thing off me!

I had to keep the Holter monitor on until 3:30 pm. Taking it off and then finally being able to shower was glorious. I made it through my shower, but when I checked my heart rate on a monitor a full 25 minutes after having first stood up to take my shower, it was at 130. So I grabbed a 30 oz container of water and a bag of pretzels (gluten free, of course) and stuffed myself. Remarkably, it made me feel a lot better; another giant clue that I have some sort of orthostatic intolerance, as increasing sodium intake and hydration is basically the primary means of managing POTS. But more on that at another time.

My family (parents and brother) arrived in the evening and David got home from work shortly thereafter. Since it’s a tradition in David’s family to have homemade New England clam chowder on Christmas Eve, we had that for dinner. We spent the rest of the night catching up. Based on my response to my “salt loading,” David and I came up with a daily hydration plan to try to keep my symptoms at bay. First thing when I get up in the morning, I will drink a Gatorade to get some sodium into me. Then, after I’ve at some point consumed two 30 oz containers of water, another Gatorade, and so on.

I tried out the hydration plan when I got up Christmas morning. And by golly, it worked! I felt great for most of the day! David’s parents arrived around 11:30 am as David was finishing preparing Christmas dinner. It was delicious and enjoyed by all!

Following Christmas dinner, we did a video chat with my brother-in-law and sister-in-law, which was, as always, very entertaining! By 3 pm, it was time for presents! It took us two hours to get through everything with there being seven of us. It was a lot of fun because I think everyone got things they wanted. I got a nice haul of books I wanted and other stuff. Even the cats were enjoying their new valerian-filled pouches (except Aurora; she gave it a sniff and went back to sleep. Molly, meanwhile, was going nuts.) David’s parents headed home after we all spent some more time chatting, and the rest of us just basically hung around being lazy for the rest of the night. I suppose you could say it was technically a white Christmas, but all the snow was melting and there were patches of grass everywhere. All the rest of the snow melted today since we hit a record high of 64 degrees Fahrenheit (18 degrees Celsius.) But the snow will be back in a few days…

This weekend was a true test for me. I will be upfront and say both days completely depleted my spoons. Last night, as I was folding up tissue paper to store away and be used again, I suddenly started to feel off, so I had David get me a Gatorade, which was my second one of the day. I finally crashed to a stop around 7 pm, when I sat down on the couch and realized I could do nothing more functional that day. I was even too tired and unable to concentrate on anything that we didn’t even watch the Doctor Who Christmas special live. I’m so ashamed; it’s been a whole year since we had a new episode of Who. When midnight hit, I could no longer keep my eyes open, so I went to bed and didn’t get up until 11:30 am today. I’ve felt reasonably well today, despite being tachycardic when I got out of bed, but right now my head hurts and my throat is sore since we have a cold front coming through. So I really don’t feel well at the moment and it’s making me grumpy. It’s getting hard for me to think right now.

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Good night, Christmas.

I also learned that I still have a long way to go as far as my health is concerned. Yes, I got through the weekend, but definitely at a price. I’m not the same as I was a year ago and I may never be again. I’m anxious about what happens next.

Anyway, this post is crap because I can’t think very well anymore. So I’m just going to stop now. Hope everyone had a great Christmas!

💛ribbonrx

 

How to Support a Loved One Who Has Endometriosis

Endometriosis is a challenging disease. Not only is it poorly understood in the medical arena, but most people in general have never even heard of it. Yet it affects 1 in 10 women worldwide and can take up to ten years, or longer, to be properly diagnosed. Symptoms can be debilitating, and women may have to endure multiple surgeries to find relief. The gold standard and best treatment available, surgical excision, is challenging for many women to have access to, due to insurance issues, geography, and the sheer lack of skilled and experienced surgeons who are able to perform this meticulous surgery.

So what can you do if you have a loved one who is diagnosed with this life-altering disease? Continue reading “How to Support a Loved One Who Has Endometriosis”

A Therapeutic Thanksgiving: Coming Home

Last Thursday was Thanksgiving here in America. The real, official start of the holiday season. No one can deny it’s too early for Christmas music any longer!

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Boo says, “Oh. It’s you.”

After barely managing to drag myself out of bed Wednesday afternoon, David and I headed to my hometown, a four-hour drive away. Having not been there since May, I was very much looking forward to it. Luckily we had good weather and made good time, despite needing to stop at a rest stop to use the facilities and because I had to walk around to prevent blood clots. Once we got there, we were immediately greeted by Boo and Ziggy, the household rescue tuxedo cats. I missed them so! We had dinner with my dad and brother since my mom was at work. My dad and I spent the rest of the evening talking about a range of topics, including blogging and writing in general. He’s given me good advice throughout this whole blogging adventure, since he is a writer himself. Pretty much everything I know about writing I learned from him.

My mom got home from work after midnight (she’s a nurse) but she and I stayed up until 4 am talking and going through old photos of her and my grandparents and great-grandparents. I love looking at old photos, and there were a few I had never seen before. Since I manage a lot of my family’s ancestry information, it was good to be able to put faces to names.

On Thursday, I awoke early afternoon to the delicious smells of turkey and stuffing in the oven that can only mean it’s Thanksgiving! However, I was still so exhausted from my hospital adventure earlier in the week that I didn’t manage to drag myself out of bed until 2:30 pm. (I used to watch the Macy’s Thanksgiving Day Parade when I was younger, mainly to see the Garfield balloon, but now I value my sleep more!) But I had to get up because relatives were due to come over at 3 pm and they arrived right on time.

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Left: my mom, dad, and brother Brian   Middle: Connie    Right: Uncle Bob

We had my Aunt Mary, Uncle Bob, and his mother Connie, who is 95 years old, sharp as a tack, and the sweetest elderly lady you will ever meet. I was a little embarrassed that I was in my pajamas, since the groin pain didn’t even really allow me to put jeans on, but no one cared; they all know I’ve been through some unbelievable crap this year.

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Aunt Mary, David, and me

Dinner was a tremendous success. My family has really gotten the whole gluten free thing down in the last four years since my celiac disease diagnosis. I had my own stuffing made with gluten free bread and my own bowl of gravy. We had ensured beforehand that the turkey was gluten free (it was farm fresh anyway, but as an FYI, many companies inject gluten-containing fillers to plump up the turkey, so you need to be careful if you can’t eat gluten.) David made the pumpkin pie with a gluten free crust and my mom made our dessert staple called Hydrox Dessert with gluten free chocolate sandwich cookies. No one could tell the difference!

After dinner, we engaged in the age-old pastime of watching football while trying not to sink into food comas. I usually don’t watch football, but it just felt right to watch it with my family on Thanksgiving.

Thursday really did a number on me in terms of social expenditure and spoons, because I woke up with a migraine on Friday. As a result, I was unable to go see The Nutcracker with my family, which disappointed me greatly, but it is what it is.

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Finally meeting CeCe!

At least I was feeling well enough by evening, because our family members came back over, but this time with my cousin Ken, his wife Laura, and their 9-month old little girl Cecelia. This was actually my first time meeting Laura due to a confluence of circumstances, but we got along well right away. And this was my first time meeting CeCe as well. She was born prematurely in February, but is doing wonderfully now! She’s crawling all over the place and can pull herself to stand up. Holding her just felt so right. Maybe someday soon…

(Left: The look of a man who wants to be a daddy! Right: Ziggy watches curiously as CeCe plays with his crinkle ball)

Saturday we had to wait until The Game was finished before we headed back home. It went into double overtime and I thought my poor husband was going to have a stroke, but thankfully the Buckeyes came out on top! O-H! We didn’t leave until 4:30 pm, so it was almost dark, and ran into periods of heavy rain, but thank goodness it wasn’t snow. We made good time getting home, too!

Feeling very run down aside (I literally spent the whole weekend in my pajamas), it was a wonderful weekend. It was exactly what I needed to perk myself up. Especially when I realized that the last time we went out of town was in July…when we went to Atlanta for my surgery at the CEC. So even that trip was tainted by hospitals and surgery. So I desperately needed this trip. To see my family that loves me and cares for me, even though I don’t see them often. To see Boo and Ziggy (animals are very therapeutic.) Just to be back in my hometown with its familiarity. It did wonders for my mental health as well. I feel like I’ve broken through some barrier that was keeping me from being happy. Not that things are all sunshine and daisies, but I feel…different. In a good way.

And the blood will dry
Underneath my nails
And the wind will rise up
To fill my sails
So you can doubt
And you can hate
But I know, no matter what it takes
I’m coming home
I’m coming home
Tell the world I’m coming home
Let the rain wash away
All the pain of yesterday
I know my kingdom awaits
And they’ve forgiven my mistakes
I’m coming home
I’m coming home
Tell the world I’m coming…

Coming Home, Part II: Skylar Grey

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