One step back.

The other day as I was talking to to the electrophysiologist’s nurse because of some more paper issues, I decided to make another appt with the dr. since ive been feeling extra crappy lately. 😦

Today I went to this appt-

-And apparently I need the ablation asap.

As I sat on the table leaning forewardn nauseated, lightheaded and feeling like someone is sitting on my chest- the dr(s) were shocked as my heart rate was in the 140’s just sitting up. my heart has been racing alot lately and i’ve been feeling  worse and worse,  and now I know why…

Apparently its “whats to be expected.” my heart cant handle the increased hr all the time… and its putting me in danger of going into cardiomyopathy.

The dr now thinks my issue is leaning towards IST… but acknowledged that im a really complicated case.

I definatley need to be on some medicine starting immediately, he said-  so im going back on the Verapamil, because thats the only thing I havent had horrible side effects on. (Although it didn’t seem to work before either.)
The dr. wants to do the ablation ASAP

… I almost wasnt even going to be allowed to go home tonight.

Im waiting to hear back from the nurse now about scheduling.

He also said the best way to do the ablation for the ist is with open heart ablation but he want to try regular ablation (s) first.

I really want to go to Vanderbilt first, and get their opinion, but now they are pushing to do the ablation first.

I do have the option though, if the Verapamil miraculously starts to work- to wait until after Vanderbilt.
..I guess we’ll see.

 Update: My ablation is scheduled for March 15th, 2017

#December Spoonie Challenge!

Hey everyone, so I was scrolling through instagram and I came across this awesone challenge shared by a friend and I thought it would be fun to try! I will post all the days in this one post, so keep checking back for updates!

Day 1- The illnesses I have (which are what my blog is about! 🙂 ) are POTS syndrome, Inappropriate sinus tachy, Atrial Tachycardia, Ankylosing Spondylitis, and depression to name a few.

(I also have an increasingly hard time eating as I battled with tonight.)

Day 2- Ive heard a lot- but the craziest cure would probably be when my family dr. told me i needed to gain more weight (eveb though im not even underweight..) and ALL my problems would dissapear!..

Day 3- First, I want you to know what happened yesterday, because i’m still shaken up about it…(you can seee that in my next post “one step back”.)

I really want people to know that im not just trying to complain, or get attention. I want people to know that it is real, and I struggle in ways they probably dont even think about… I want people  to know that its not easy to be strong all the time.

Day 4- SWEET TEA.😍

I know your not supposed to have caffeine, but it honestly doesnt seem to bother me…and its sooo darn good.

Day 5-  My Favotite Hydration would have to be Propel flavored Electrolyte and Vitamin drink. Its flavored water, with  benefits. I dont always get that though because of price; so my second favorite is good old G2.

Day 6-

Day 7- I’ve had a rough past few days so this speaks well to me:

My heating pad is a must on muscle/ joint pain days, and so is Tylenol. (since I cant take ibuprofen anymore) and a mscle relaxer when it gets really bad. Zofran. And bland foods (for when my stomach is acting up) .

Day 8- 

Today Blends in to day 7, but I am currently taking only Verapamil (and vitamin D, regularly, and Zofran, Tylenol, and Muscle relaxers when needed).

Day 9- I think i’d need more than a spoonful…😁

But I need a spoonful of a lot of things.

  • Hope
  • Understanding
  • Compassion
  • Energy
  • Support

Day 10- If I could get rid of 1 symptom, I would get rid of my Hyperhydrosis, because of how much in impacts all the social aspects of my life.

Day 11- Pets. Although it would be so cool to have a service dog 🙂 I have a bunch of cats, and even kittens that I foster.

Day 12- I don’t have a hospital selfie per-say, but i do have this pic i took after my tilt table!

Day 13- My support system is quite small honestly.. but im lucky to have my parents and my grandparents and aunts and uncles to listen to me when i need to 🙂

Day 14- Thanks to @cardsforwarriors for this awesome project they are doing! (which so happens to go with todays post!) 🙂

My illnesses make me a warrior because i fight in ways peolple don’t know about everyday, which is one of the reasons i made this blog, to share my experience with chronic illness so others don’t feel alone!

Day 15- Throw-back to when I could (kind of ) play soccer!

Looking back at a year ago, its hard to believe I was able to play at all. Some People may think im weak for letting it stop me,even though honestly I had no choice (dr’s orders..) but I now realize just how much I ignored my body. I ignored the feeling faint, the palpitations, the pain…

 … I pushed so hard to get to that point of being able to play soccer.

And now not being able to play it, and practically being forced on bedrest…not only by my dr’s, but by my body…

…Well, i’d say that makes me pretty darn strong.

 Most days, its hard to see the light at the end of the tunnel. It’s hard to be optimistic. Does that mean im weak?

Maybe. But you can’t put on brave face every day.

On other days though, I can. I’m hopeful that Vanderbilt can help me, or the Ablation will work. I am hopeful that I will return to soccer, go to college finally, and/or even have a job, and start driving again.

One way having a chronic illness can effect you that i dont think  many people talk about, is how it effects how you see your body. This is especially true if you were very active before, and now hardly move at all. your muscles break down, and suddenly you have “flabbiness” And that certainly gets to you emotionally…

…and it only makes you feel weeker.

Looking through old “healthier” pics may be sad, and depressing, but it also only makes me want to get back to that point, and even be able to do more!

🙂

Day 16- The most helpful advice I have recieved is……

Day 17- Shout-out to all my dr.’s who didnt think im crazy. 😀 My favotite dr ive seen would have to be my first cardiologist even though he didnt know alot about my conditions, he was the one to diagnose my IST and POTS, and he was really nice and funny!

Day 18- My Favorite “safe”  food would either have to be sweet potato anything, or to just drink my meal in the form of “Carnation breakfast essentials”.

Day 19-

Does this count as an “awareness collage?” … I practically live in the dr’s offices… 😦 These are my upcoming appts but it will be sure to grow as i will soon be adding a gi dr to my list! As well as im sure a few more heart appts, eyen dentist…

Day 20- christmas decorations… we made stockings for all of the foster kittens 🙂  (we resued them from the local kill shelter)

Day 21- I dont even own pj’s ….

– or slippers.

Day 22- Hot chocolate… 4 sure ☕😊

Day 23- We do have lights outside, but heres the lights on our tree!

Day 24- My Favotite christmas movie would be either christmas vacationn or The Santa Clause (1, 2 and 3)

Day 25- Merry Christmas! ⛄❄🎄

…And happy holidays everyone! I hope you have a great new- year! 😀