Coping with POTS

I was recently provided with a very well-written article about POTS (postural orthostatic tachycardia syndrome) by a fellow POTSie who sees the same specialist I do. The article was written by the specialist, his nurse, and some of his patients who are in the healthcare field. Please feel free to share the article with friends and family members! 😊

While I enjoyed all aspects of the article, the part that surprised me the most, mainly due to the fact that it was even included, was the section entitled “How Do I Cope Emotionally With POTS?” This section discusses emotions that may be felt by an individual with POTS (or any chronic illness for that matter) and tips about how to cope with these feelings. As an exercise, I stayed up very late last night writing out how I’ve experienced these emotions with relation to my POTS diagnosis and course of illness. It was a very nice catharsis!

All definitions below are from the document cited above. Continue reading “Coping with POTS”

…That Surpasses Understanding

For the past week or so, something has been happening to me that I can’t explain.

My sleep has been a bit off-kilter, although this isn’t unusual. Since I don’t work anymore, my circadian rhythm somewhat resembles this:

Doctor Who GIF - Find & Share on GIPHY

Anyway, on some days, I’ve found myself awake very early, between 4 and 5 am, unable to sleep anymore. Ok, whatever. Not a big deal.

But once the sun comes up, it starts. A near-skin-tingling anxiety that has me pacing, sitting on my bed rocking back and forth, and punching pillows because I can’t relax. I can’t sit still to read or write. Listening to music doesn’t calm me at all. Continue reading “…That Surpasses Understanding”

June Book Haul

All book blurbs are from Goodreads.

This month I selected two books from the Book of the Month club.

IMG_1371Chemistry by Weike Wang (2017). I’m not quite sure what drew me to this one, but I guess I’ll find out when I read it.

 

 

IMG_1372Theft by Finding: Diaries (1977-2002) by David Sedaris (2017). Ok, I’ll be the first to admit I don’t know who David Sedaris is. All I know about him is he’s supposedly very funny. I was drawn to this 500+ page behemoth because of its curious format: a diary.

Now for my Amazon finds. Continue reading “June Book Haul”

Nocturnal Musings #23: Out of Hell

I have to go there today.

That place.

That hospital of which I am deeply afraid.

For a follow-up visit with my endocrinologist to check my prolactin to make sure my tumor is still in check, even though my MRI from two months ago (7 months post-op) was clear.

I can already smell the smells. Starbucks, of all things. Alcohol wipes. Plastic tubing. Fluid bags from patients going for walks. I can smell a TPN fifty yards away. Occupational hazard.

I can already see the blindingly white walls and stainless steel everything that provide zero comfort to a terrified patient. And possibly a need for sunglasses.

I can already hear the ever-present music that is supposed to be soothing playing over hidden speakers. Continue reading “Nocturnal Musings #23: Out of Hell”

Nocturnal Musings #22: Say Something…

I just don’t have the heart right now.

Nothing’s changed.

And maybe that’s the reason.

Say something…

You think you’re fine and then suddenly you’re not.

Again.

Biding my time.

Until what? Continue reading “Nocturnal Musings #22: Say Something…”

Sunday Stealing: The Procrastination Tool

Greetings, one and all! Time to have some fun! I picked up these lovely questions down South at the McClendon Villa! Originally, however, they were the loot of Sunday Stealing! Check them both out!

But as for me…

1. What is your favorite sit-down restaurant?

This is a tricky one. I was diagnosed with celiac disease in 2012 and in this area of the country, it’s actually quite challenging to find a restaurant that can safely cater to a gluten free diet. The only place I really feel safe at is a restaurant called Skye.

2. What food could you eat for 2 weeks straight and not get sick of it?

Gluten free lemon bars from “Mom’s Place Gluten Free.” Great place if you’re looking for gluten free baking mixes!

3. Have you ever had anything removed from your body?

DesignA baby tooth that wouldn’t fall out because there was no adult tooth under it at the time, four wisdom teeth, appendix, endometriosis lesions, and a brain tumor.

4. What is the last heavy item you lifted?

The glass piece for the storm door after we put the screen in for the summer. It takes two people to lift that thing.

5. Have you ever been knocked unconscious?

Not really “knocked” unconscious as in punched in the head or anything. But I’ve had six surgeries and two endoscopies, so full general anesthesia six times and brief sedation twice.

6. If it were possible, would you want to know the day you were going to die?

No, because I’d spend my whole life freaking out about it.

7. If you could change your name, what would you change it to?

 Sara Renee.

8. What’s your goal for the year?

No emergency room visits, hospitalizations, or surgeries! (I have to have an angiogram in November, but I’m going to count that as imaging, even if there is sedation involved…)

9. Last person you hugged?

My hubby David.

10. First place you went this morning?

 The bathroom.

11. Do you always answer your phone?

 Only if I recognize the number.

12. It’s four in the morning and you get a text message, who is it?

 Probably my brother on his way to O’Hare.

13. If you could change your eye color what would it be?

 I like my hazel eyes, but I wouldn’t mind having green eyes.

14. What’s on your wish list for your birthday?

 Books.

15. Does the future make you more nervous or excited?

With all my chronic illnesses and not knowing what’s going to get me next…nervous.

16. Do you have any saved texts?

 All of my texts are saved.

17. Ever been in a car wreck?

A few fender benders. I got rear-ended on Interstate 90 once when someone cut me off and I had to slam on the brakes. But everyone was fine and there was little damage to the vehicles.

The scariest one was my freshman year of high school. It was January and my brother, who was a senior, was driving us to school. He had pulled into the intersection waiting for traffic to pass to make a left turn, which he did just as the light was changing to red. Some idiot from our school was coming from the opposite direction to turn onto the same road (a right turn for him) and he ran the light and swung wide into our lane just as my brother was making the turn. The reckless driver clipped our passenger side door where I was sitting (I can still remember the scraaaaaaaaping sound) and somehow managed to rip the front bumper off our car. He took off, but not before my brother got most of the license plate. I’m proud of my brother; he kept a cool head (after letting loose some choice words), pulled into a CVS parking lot that was right there and immediately called 911 for a police dispatch. We were fine, but the car needed some attention. Later in the day, my brother went out to the student parking lot at school and found the car and was able to give the full license plate to the police. For months afterwards, if I was in the front passenger seat of a car and we were at a four-way stop, I would panic that other cars would run the stop signs and T-bone the passenger door.

18. Do you have an accent?

Technically everyone has an accent. But this seems to be the one I have, called the Northern Cities Vowel Shift. Who knew? (It’s “Raaaaaahchester…”)

19. What was the last song to make you cry?

20. What did you do last night?

Went to bed early because I didn’t feel well. 

21. Have you ever felt like you hit rock bottom?

 Yes. The entire year of 2016.

22. Current hate right now?

Warm weather. I usually enjoy summer because I tend to be freezing all the time. But this is my first summer with Postural Orthostatic Tachycardia Syndrome (POTS). Many POTsies (apparently myself included) have severe heat intolerance and the warm temperatures cause us to dehydrate very easily, even more so than we usually do. (For example, I get extremely dehydrated just from sleeping too long.) But we do have central air, ceiling fans, and a pool, so hopefully that will keep things tolerable.

23. Met someone who changed your life?

 I accepted Jesus Christ as my Lord and Savior on April 13, 2001 when I was 15 years old. It was Good Friday that year, so it ended up being a very Good Friday.

24. How did you bring in the New Year?

Watched the Times Square countdown on TV with hubby. Then a neighbor had a very large (and very illegal) fireworks display that we could see out the back windows, so we watched that for a solid five minutes. No idea where this neighbor managed to get fireworks of this size and quality.IMG_1572

25. What song represents you?

💛ribbonrx

She Told Me I Was Beautiful

And now she’s dead.

Back up.

This post contains discussions of untimely death and suicide. Please stay safe and steer clear if these subjects may be triggering for you.

One of the interesting things about having chronic illness(es) is how your friendships change. In many unfortunate cases, people who were once your friends fade into the background. Sometimes it’s because they’re uncomfortable being around someone who is ill. Or maybe they don’t like the new version of this person they knew for so long. Or they could simply just not believe there’s anything wrong with this person because, like it or not, many chronic illnesses are invisible illnesses.

As a result of this, many individuals with chronic illness develop online friendships with others who are ill; people like themselves who understand exactly what they’re going through. Although not all of these friendships are with people who are ill. I have found new friends who are like-minded in faith and love of literature who I care for just as much.

But in the world of cyberspace, these friendships can result in heartache more often than you might think.

Continue reading “She Told Me I Was Beautiful”