Friends, Can You Help Me?

I’ll try to keep this short and sweet so as to not burden anyone.

I need help from you, my faithful readers.

The brain fog caused by one of my medical conditions, POTS, a form of dysautonomia, has made it monumentally difficult for me to think. It’s like…my thoughts won’t connect, or certain parts of my brain won’t talk to each other. I can almost feel this void in the middle of my head, like a bridge is out over a river. I can feel an idea, or a sentence starting somewhere, but then it doesn’t get to where it needs to go, and it never materializes. I feel as though I’m stuck with all of these thoughts bouncing around in my head, but they won’t come out or even come to fruition.

I’m not using this as an excuse for my less than stellar writing as of late or for my general lack of writing altogether. I just can’t come up with anything that I think would be worth anyone’s while to read. So I’ve stopped writing. Or I’ll write something and immediately trash it because it’s not of a high enough standard for me to release to all of you.

So here’s where I need your help.

  1. If you have anything about any of our specific disease states (and this is being cross-posted, so this means endometriosis, adenomyosis, POTS and dysautonomia, that stupid brain tumor, celiac disease, depression, social anxiety, infertility, etc) that you would like to see a blog post written about, please comment and let me know! I can’t guarantee I’ll be able to get a post out of it, but I’ll give it a good college try.
  2. Is there anything regarding myself you’d be more interested in knowing about? I will answer questions about almost anything, while maintaining privacy where appropriate.
  3. My blog does better the more followers I have. So instead of having to scroll through Facebook and hope to stumble across one of my posts, I invite you to go to the About page of my blog, scroll down to where it says “Follow Blog By E-mail,” and sign up! You will receive an e-mail only when I post, and no spam! If you happen to have a WordPress account, you can sign up using that too.
  4. If you have a blog and want to share, feel free to comment and leave a link so we know about each other’s blogs! It’s best to encourage and inspire each other, not to mention providing support to each other because of what we’re going through.

I really just need a spark to light the fuse in my brain somewhere. I’ve been trying and trying and can’t get through this brain fog. It’s made me want to quit blogging, and I’m very close to doing just that because I can’t deliver quality blog posts to you, my dear readers, anymore. For that, I am sorry.

If you can do anything to help me out, don’t hesitate to suggest an idea. You all are what makes this blog possible and meaningful, not me. That’s why I need your help to get me off the floor and get my brain working again.

I don’t want to quit blogging. But if I just stay like this and don’t move forward soon, I’ll have no choice. Please help me to not let that happen.

I love you all.

💛ribbonrx

Is My Illness My Fault?

For me, 2016 was the year of the surgeries and bizarre diagnoses. Three surgeries, to be exact, spanning over a period of four months. Once the surgeries were over, I thought that once I had an adequate recovery period, I would be back to normal. I’d be able to return to work, from which I’d had to take an extended leave of absence, and I could put the entire year behind me as a gargantuan fluke.

But it was not to be. Almost exactly a month to the day after my third surgery, I started experiencing symptoms that very quickly led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). The tachycardia (rapid heart rate), shortness of breath, and presyncope (near fainting) were being caused by moderate hypovolemia (testing revealed my blood volume to be 18% below normal) and severe venous pooling (35% of my blood volume was pooling in my lower extremities; this number should be 5-10% in a normal person with quick resolution within two to three heartbeats).

Why did this suddenly happen? POTS has been linked to certain autoimmune diseases (including celiac disease, just my luck) and has been noted to occur following such events as pregnancy and trauma. However, medical science does not yet know why POTS happens. So what was going on with me? Continue reading “Is My Illness My Fault?”

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

Give Your Heart a Break

IMG_1239One more time around the sun, one more time passing through National Infertility Awareness Week as an unintentionally childless woman. I guess you could say this is my third time.

It’s an understatement to say that a lot has gotten in the way of my attempts to become a mom.

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Ready for excision surgery!

In 2014, not long after we had starting trying to get pregnant, my battle with endometriosis took the forefront. Within a span of six months, I was hospitalized, diagnosed, and had two surgeries, one of which was out of state with an excision specialist. Then recovery began, and our efforts to get pregnant resumed in 2015.

Needless to say, I did not become pregnant in 2015, and we were baffled as to why not. Continue reading “Give Your Heart a Break”

In Which People I’ve Never Met Become My Friends

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. Although I can still recall during the last two or three years (of a six-year program) a few examples of downright deliberate cruelty perpetuated by young women I thought were my friends…

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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.

But what does this have to do with friendship?

Everything. Continue reading “In Which People I’ve Never Met Become My Friends”

I’m a Little POTSie…

Sometimes the only way to get the best care is to take things into your own hands. I’ve done it before, and now I’ve had to do it again. But I’m glad I did.

Dr. J had told me to call his office about a week after my testing that occurred on January 11th and January 13th to talk to a nurse about my results. So I called on Thursday the 19th. They said they’d call me back in a few days. Nothing. So I called again Monday the 23rd. The said to give it “one more day.” Nothing. I sent a MyChart message Wednesday politely demanding the results be released and for someone to call me to discuss them. Last Thursday night most of my test results were released to MyChart, but with no explanation, so I had no idea what they meant. So I called the office Friday morning to see what the heck was going on. Continue reading “I’m a Little POTSie…”

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”