A glimmer of Hope..?

Just  wanted to update on whats been  going on recently, since its been quiet a while since I’ve posted last!

Today I had my yearly optometry/contact lens visit. She looked over the reports from the retina specialist and neuro-oplthalmologist and confirmed there doesn’t seem to be anything structural that could explain the light flashes in my vision, so its likely neurological!

Like a week and a half ago, my lips and cheeks and chin suddenly felt uncomfortably numb and tingly, but i just thought  maybe i slept wrong or something  and it would go away. Well like a week later it didnt, so i contacted my drs office and one of the nurses advised me  to go to the Er! (Because i also advised them of 2 more near-passing out episodes i had) and said id been dizzy, but they werent at the same time. I didnt go to the ER though, because i thought well its been a week and it hasnt killed me yet?! 😂 but seriously i wasn’t that concerned.

With my doubts, i still wanted to know of anybody else had felt this before, so i asked some people on facebook. and one of them -in an almost urgent tone- said i should get checked for chiari malformation (a brain abnormality) and cervical/cranial instability. She shared a picture of the symptoms with me and lo and behold! Light flashes -or photopsia- was one of them!

I will say that there are some symptoms that I dont have though, like headaches; but the form I would most likey have called adult chiari or type 1, can be symptom less.

If i do have this, it would explain my back of the head pain, neck pain, numbness and tingling in my hands/fingers, and maybe even my scoliosis!

Theres a potential cure for this too, which involves some kind of brain surgery, but that would be great if this is what  i have, that there could be a fix to some of my symptoms! 🙂

…

I contacted my electrophysilogist’s nurse to hopefully get her opinion about this numbness/tingling in my face, (and see if maybe it’s pots related) and i asked her about the chiari, and if i could possibly get and mri… and hopefully I will hear back from her soon!

 …

*Update: The nurse asked the dr, and said its not pots related, and i should to go to neurologist. I see my family dr on the 24th. Hopefully she’ll be able to find what’s going on.

… I’ll update soon!

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! 😀

Amazing News!

 

The other day I was so surprised to see that I got a packet in the mail, adressed from Vanderbilt! When I opened it though I was disheartened to discover it was only a bunch of blank new patient papers, similar to the ones I filled out already. I was very confused as to why they would have sent me the papers I had already filled out. I faxed them over to the electrophysiologist’s office for them to look at.The nurse must have figured it out… because 2 days later… on November 10th I got the phone call i’ve been waiting about 2 months for!…
…

I got accepted to Vanderbilt’s autonomic center!😀😂😁

The first appt is on February 28th, 2017!

Thats all the lady could tell us, but I was informed they will be sending a packet with papers and more information. I am so happy! 😄

I have more good news! I have not had any appointments since I went to the Neuro-opthalmologist on Oct 7th! And I also (currently) don’t have any coming up! It’s been so much nicer not having to go to any appt’s!☉🌴…

… Especially since I was going to one every week! Its sooo nice.

*Update- I recieved the packet of info about the appt, and to my surprise they sent me the papers again and one paper says they want the blood pressure measurements again and to fill them out within a month of my appt…

…which im really hoping is not the case.

Here’s my appointment times! Looks like its only going to be one day so far, but I hope I can see one of their Neuro-opthalmologists while we’re there (for the flashes of light in my vision.) Im not sure if they can or how to even go about this, but its gotten really bothersome.

I also almost went to the ER again on Nov 12 after something weird happend… but now that i think about it i was being pretty careless…So I didnt eat all day (because I wasnt really hungry) and I went to my brothers soccer game and sat out in the sun for a few hours, and then on top of that I ate a bunch (well alot for me) of McDonalds.

About 2-3 hours later I started having really bad “waves” of palpitations which came with a migrating pain in my jaw, sweating profusely, shortness of breathe (which i havent felt in a while) everytime I moved or changed postions. I was also extremely fatigued, pins and needles and numbeness in my feet, and had a mild headache. The palpitations and sweating and everything was just so uncomfortable! …

I was somehow able to stand it though and after another 2 hours or so it gradually wen’t away.

Staying Strong

I hope everyone had a good Halloween!

My brothers and I

I spent Halloween as I normally do-scaring people! (In our yard haunted house.)

My legs were so sore from helping build it, and I had been having alot of palpitations, so I was so glad I got to lay down for my scaring job on our trampoline!

I was completely burned out afterwards, and litterally spent the whole day Tuesday on the couch. 😂

Before halloween I stopped taking the Verapamil, since it still wasnt working, and this morning I got the official “notice” I guess from the electrophysiologist’s nurse to stop taking it. They also informed me theres “nothing more they can do” which sucks, because i’ve been getting a ton of dizzy “episodes” lately, and having a ton of palpitations. They also said I need to try and contact Vanderbilt to check the status of my application.

In other news, Ive been deeling with some pretty painful lymph nodes in my throat all day, muscle spasms, and battling these intense stomach cramps. I’ve also been seeing alot of those “light flashes still, especially the orange ones. Yesturday while walking into my living room, I saw a really bright one but this time it had a black center. I really wish i knew what was causing this!

The unknown is truely the worst part of having an undiagnosed illness.

Even though i have some diagnoses’, there are still alot of unknowns.

I’m not letting this bring me down though.

As much as all the pain and the unknown sucks, I hold on to hope that it will all be sorted- out soon and i will get accepted to Vanderbilt, and they can figure it all out!

Hope everyone has a good rest of the week:)

The Great Big Symptoms List

Yesturday, after a horrible morning of low back pain and a sore throat (again) I took some bood pressure measurents from home for my electrophysiologist, to determine if I need to stop the Verapamil, or increase it again. (I already increased it once, because i’m not noticing any change on it.)

Verapamil is a cacium channel blocker, which is kind of like a beta blocker…but it’s goal is to control my Atrial Tachycardia arrhythmia, and it also can be used for high blood pressure.

Since I had no idea which measurements they wanted (sitting,laying,standing), I took all three. I layed down for about 10 minutes (like I do at the office) and then stood up,

 and WOAH- that was dangerous!

My vision went completely black for like a minute, and i felt like I was about to pass-out. (Update, my vision has been going black a lot now…)

(My blood pressure went from 98/65 laying down, to 129/86 standing up!)

The hr went from about 73 – 102.(According to my bp monitor, it was probably higher)

If you haven’t figured it out already from my previous posts, here is a great big list of everything I have to/have had to endure thus far:

• “Extreme exercise Intolerance” aka when I exert myself my heart rate goes up very high, very quickly, causing me to become lightheaded/dizzy/feel like I’m going to pass-out (although I never have, yet.) My heart pounds through my chest, and I get disturbing palpitations where my heart THUMPS so hard, that it makes me cough! (After having stopped exercising because of the lightheadedness I now also began having chest pain when I try to exercise.)
• Also take a long time to recover from exercise (3-4) days, and I am exhausted on those days.
• Shortness of breathe with exercise 

• High heart-rate/ Dizziness when standing. (Vision sometimes goes black.)

• Fatigue. All the time… Suddenly become randomly exhausted sometimes during the day. (May be due to my arrhythmia.)

• Nausea/ Discomfort after eating while upright.Along with bloating and belching. That’s right. I have to eat while either slouching back or laying back in a chair. This symptom has progressively worse and causes huge problems..:(

• Cannot tolerate sitting straight upright at all- w/out tachycardia, lightheadedness/ dizziness. Or standing still, or walking for a long time. I either have to be leaned back or laying down.

• Hyperhydrosis- aka excessive sweating. Enough said.

• Chronic (episodes of) muscle spasms, joint pain, random frequent sore throats, swollen glands, fatigue (possibly CFS, Ankylosing Spondylitis -Arthritis)

• Mild Kypho- Scoliosis (~16°)

• Concentration and Memory problems, aka “brain fog.”
• sensory overstimulation.
• Disorientation almost (like poor mental clarity and slow thinking.Its also harder for me to have a conversation while sitting/standing upright.)

• Previous random, monthly vomiting.(only vomited 1x per incident.)

• Ocassional finger/hand numbness and tingling. Cold hands.

• Possible “absence seizures” in middle school. Possible “panic attacks” (which I believe was the new diagnosis’ all along…)

•  “Borderline- exercise induced athsma” (also probably the other problem’s)

• “Light Flashes” in vision. (1 spot of light that’s either white, orange or blue and lasts ~1 sec.) Happens several times per day.

I think thats everything major…

After reading all that, here’s a daily dose of relaxation from st pete beach!

(We took a much needed break to the beach on Wednesday 🙂 )

From Monday to Wednesday next week (24th-26th)  for every picture posted on this page https://www.facebook.com/events/670923763063841/  of someone wearing turquoise

Cutting Edge Kitchen and Bath in Arlington, Washington will donate $1 to Dysautonomia International to help find a cure!

🙂

I still haven’t heard anything from Vanderbilt… but I’ll be sure to let you all know!

  Have a great weekend! 🙂

Neuro-Ophthalmologist/ Hurricane

This morning I saw a neuro-ophthalmologist, to hopefully figure out why I keep seeing “light flashes.” Of course he didn’t have a clue, but thinks they actually might be related to my POTS somehow, (although I guess with POTS or conditions with reduced blood flow to the brain the flashes usually last longer.) so if I get into Vanderbilt he suggests I ask them for a referral to their neuro-ophthalmologists because he knows them apparently, and said they are excellent. He also said it could be from the vitreous (jelly) in my eyes tugging on the retina (and to go back to the retina specialist if there is suddenly a shadow in my vision), but that they are just hypothesis’s and he doesn’t know…

-Story of my LIFE!

In other news, the hurricane Matthew came though last night, but luckily I am on the other coast of Florida- so we virtually got nothing from the storm.

I hope everyone who was/is in the path of the hurricane stays safe and is ok! 😦

Happy Dysautonomia Awareness Month!

Welcome To My Blog!

And Happy Dysautonomia Awareness Month!

It is also the Awareness month of 2 other causes near and dear to me: Pregnancy and infant Loss awareness, and Breast cancer awareness Month.

We need to remember to keep them in our hearts as well. ❤

October is STRONGTOBER!

❤

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I’m so excited to finally share my blog with everyone!

With excitement, comes a little apprehension though. I often feel very guilty for sharing my pain, when I know a lot of people have it worse…So it’s been really hard for me to share my blog…

I hope though, that by sharing my story, I can help other people who are going through chronic illness’s

and raise more awareness!

If you have any questions, feel free to contact me!

Hold on to me, I’m a little Unsteady…

This past week has been a bit rough. My brothers and I have been sick with an cold, and then Sunday I got a really bad muscle spasm again in my left upper back, which has been relentless.

It’s actually radiating pain up into my jaw, and has made it hard to bend my neck to the side… I’ve tried everything, and it refuses to go away! 😦

Tuesday night, I broke down and whipped out some old muscle relaxers, to try to see if they help. I’ve been taking them non-stop since then, although it’s honestly not helping much- just been just knocking me out for a few hours at a time.

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This past Sunday, I went to watch my parents second soccer game of the fall season. I cant even describe how hard it was, to sit and talk to some of my old teammates, and not be able to play. It hurts so bad that it’s the only chance I had to play, and it was taken away from me. Even if I could play tomorrow,

I’m now too old. (for the u/19 team)

Even though I am allowed to exercise again, I experience chest pain every time try to now. I asked the Electrophysiologist about it at my last appointment and he said it could be due to the arrhythmia.

-So now I’m stuck avoiding exercise all over again.

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In other news: I actually went this entire week without going to an appointment! (Although, I have 2 coming up next week.)

Monday: I’m going to see the electrophysiologists nurse, to bring back those papers for Vanderbilt.

And next Friday, I am going to the Neuro-ophthalmologist.

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*Update: My muscle pain FINALLY began to subside on Friday. Yay!

Update #2- Monday: After going to get blood pressure measurements, I found out I had to come back one more time…because they need 3 measurement’s from different days… So now I have to go back early (7 am) on Tuesday morning as well.-And in other good news, my muscle pain has returned!

Update #3 Tuesday- The last blood pressure measurement went good, now the nurse can send this huge pile of records and those to Vanderbilt! She said It could be a month though before I hear if I’m accepted… I hope it doesn’t take that long!

After that appointment, something weird happened… I went to a store, and both of my whole hands went completely numb and felt stiff. It was really strange. It went away soon after I sat down… this happens to me occasionally, and at first I thought maybe it was from my neck, because usually just one or two fingers go numb… The electrophysiologist asked about it before, so maybe it has something to do with the POTS.*

…

*The Neuro-ophthalmologist questioned it too, and thinks the numbness could be related to reduced blood flow from the POTS.

And Now We Wait.

Somebody at the soccer park once asked me (while I was coaching 3/4 year olds.)

“how do you have so much patience?”

I responded as “oh, because I have 3 younger brothers” Yes, they are definitely part of the reason, but the biggest reason is this:

because I have to.

When you get sick with a chronic illness you are forced to have patience.

• patience waiting for short-term dr. visits
• patience waiting for long-term dr. visits
• patience waiting for test results
• patience waiting to hear back from a dr. or nurse
• patience waiting for new medicines to work
• patience waiting for any side effects
• patience waiting for symptoms to subside
• patience waiting for symptoms to appear
• patience waiting for friends/family to understand
• patience waiting for a diagnosis

• patience waiting for a cure.

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Thankfully, I haven’t been having to wait very long lately!

In fact, I haven’t been able to go more than 1 week without seeing a dr!

     On the 8th, I saw a new primary care dr. Where after asking a few questions about my friends/ work etc.. she “diagnosed” me with Depression.

My Response?

…

Who wouldn’t be!

You cannot just get a chronic illness, and have it change your life, and just be ok with that. When it impacts every single thing you do and is a constant battle, you cannot just be ok with it.

You can say you are.

But you’re not.

I know I speak for all of us when I say we would much rather be healthy and not have all these limitations in our lives!

But we do.

But what don’t we do?

We don’t give up. We find a way.

We don’t stop fighting.

Because we are brave,

and strong

WARRIORS!

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Last Wednesday (14th), I saw the electrophysiologist’s nurse, to take a bunch of blood pressure and heart rate measurements while laying down and standing up for Vanderbilt. They let me take the papers home to fill-out and I will bring them back soon and take a few more blood pressure measurements, then I will hear from them if I got accepted or not!

Today, I saw a retina specialist to try and figure out why I keep seeing “light flashes.”

For about a year (maybe a little longer) I have been seeing “light flashes” in my vision.

I have asked pretty much every dr. I’ve been too about them.

The cardiologist said they were likely from POTS, the electrophysiologist said no, because they are not postural and happen randomly, they are most likely from an eye condition.

I went to my optometrist in January, and she did a dilated exam, and didn’t see anything, so she wanted me to see a neuro-ophthalmologist.

When I called to make the appointment, the person told me that dr. didn’t treat light flashes, so they said “I can send you to one of our other ophthalmologists”

so, I said Ok.

retina pictures

 

They dilated my eyes and then I had pictures taken of my retinas to look for any problems there, but like my optometrist said previously, there was nothing there. SO he told me to make an appointment with the neuro-ophthalmologist (like I was supposed to all-along!)

This dr. did say it could maybe, possibly, have something to do with my POTS or the other conditions, and he also said it could possibly be from blood vessels spasming in my head or something?

Idk…He really didn’t seem to have a clue!

…

So now I see the neuro-ophthalmologist on October 7th.

Has anyone else experienced this, or something similar?

Let me know in the comments!