Busy Saturday

Very full day trying to get stuff ready/together for my dad's visit tomorrow.
(The first time I've seen him in over a year)

Amount of sleep: 6ish hours.

Diet:
- Brunch: nutella on bread, 1.5 cups water
- Lunch: half salami sandwich, two ghirardelli squares, 1.5 cups water
- Dinner: as of right now...grilled beef kabobs (first of the season!) and garlic/herb pasta. 2 ghirardelli squares for dessert. 1 cup gingerale
- Snack 1: 2 cups popped popcorn, 1.5 cups dr. pepper
- Snack 2:

Exercise/activities:
- laundry
- errands (picking up stuff for dad's visit tomorrow)
- tried to get the mower going (long story...involving me, the mower, and a car battery charger...)

P.O.T.S. symptoms experienced:
so far: headache/migraine, exhaustion, muscle weakness, nausea, stomach death (lower), nightmares, slight anxiety (probably over tomorrow), light headed, dizzy, heart pounding, cold extremities

Misc:
- have to get back to recording my BP.

Burned Out Friday

Rough night of sleep, and bad news, leading to a crappy mood.

Amount of sleep: 7 hours. although I finally fell asleep around 4am, and slept until almost eleven (with a few wake ups in-between)

Diet:
- Brunch: nutella on bread, 2 cups water
- Dinner: chicken, and pasta, 1.5 cups dr. pepper
- Snack 1: handful pretzels, small cup dr. pepper
- Snack 2: two ghirardelli squares, 2 cups water.

Exercise/activities:
- laundry
- house cleaning

P.O.T.S. symptoms experienced:
so far: headache, exhaustion, muscle weakness, pounding heart, nausea, stomach death (lower)

Misc:
- last night I had an extremely low BP: 82/39.

Windswept Thursday

Last night's "storm" never materialized.
As usual, our weather channel got us all worked up for nothing.
I understand it's better safe than sorry, but it's irritating.
We didn't even get a thunderstorm...it's just insanely windy today.
(Seriously, so windy I get blown all over the place because I'm so thin...it's embarrassing.)
****
On a separate note, this has been one of the worst days I've had in a long time.
It started awful, it's gotten worse, and I can't see it getting better tonight.

Amount of sleep: 7 hours. nightmares

Diet:
- Breakfast: one cup cranberry juice (way too nauseous for anything else)
- Lunch: mac and cheese, 2 cups water
- Dinner: roasted chicken and potatoes, 1 cup dr. pepper for migraine.
- Snack 1: small handful m&ms
- Snack 2: pretzels and small glass dr. pepper (it's 3am on Friday, so I probably should put this on tomorrow's post but oh well)

Exercise/activities:
- n/a

P.O.T.S. symptoms experienced:
so far: nausea, headache, depression, exhaustion, trembles, body aches, memory trouble/ brain fog

Misc:
- called and had some of my records transferred to my POTS specialist...she thinks there could be a connection between a vaccine I received and the onset of my symptoms- wouldn't that be a kicker.

Start with sunshine, end with a Tornado?

In a surprise turn of events, today it's 80 degrees and sunny!
Although later we're supposed to get some wild thunderstorms- I sure hope so!
As of right now, we have a tornado watch too- so excited!

I've taken the dogs for a walk because they're stir crazy after all of our constant rain.
(I would play with them in the backyard but it's still completely under water)
It feels good to release some of our cabin fever.
*****
Called the cardiologist back, I figure any cardiologist I go to will want the same tests that this guy does, so why not just have the stress test done anyways?
I'm having my stress test and echo on May 17th.
I also have to go back for another round of ridiculous bloodwork. Seriously?
18 vials wasn't enough?
Way to ruin my relatively decent day.

Amount of sleep: about six hours, and not very restful.

Diet:
- Breakfast: nutella on bread, 2ish cups water
- Lunch: pizza rolls, 1.5 cups dr. pepper (I will regret this later, but it was worth it for now- I haven't had them in ages!)
- Dinner: hashbrown casserole, bacon, 1+ cups cranberry juice
- Snack 1: couple hershey eggs. 1.5 cups water
- Snack 2:

Exercise/activities:
- a walk with each of my dogs
- cleaned out and refilled the birdfeeders (so they can eat during the next round of storms)
- started draining off the top of the pool; the backyard's already a swamp, might as well get that taken care of
- cleaned up after the dogs...was much needed after being unable to for almost a week. Again, may as well do it before the next storm hits

P.O.T.S. symptoms experienced:
so far: erratic heartbeat, nausea, headaches, visual disturbances, depression (later in the day)

Misc:
- cold sensation on half of my body, very odd...has happened before as the result of a pinched nerve

Thunderstorming Tuesday

Today it's thunderstorming, which I love, but it makes me continue to feel crappy.
***
The Sabres have lost, and I've been treated like crap, so I'm really in a bad place tonight.

Amount of sleep: seven-ish hours. minimal rest though. Hilarious dreams involving my boyfriend's roommate. (lol!)

Diet:
- Breakfast: nutella on bread, cup of fruit, 2ish cups water
- Lunch: polish sausage, potato with butter/cheese/facon, 1 cup fresh fruit (pineapple, blackberries, strawberries), 1 cup pretzels, 1 cup dr. pepper
- Dinner: hamburger and baked potato, 2+ cups water
- Snack 1: handful hershey eggs
- Snack 2: rice krispies treats, 2 cups water

Exercise/activities:
- two long walks with my dogs during a break between thunderstorms. (appx 1 hr.)

P.O.T.S. symptoms experienced:
so far: pounding heart, extreme fatigue, body aches, cold extremities

Misc:

(Almost) Excruciating Monday

Well, yesterday was a full day and today I'm definitely feeling it.
I'm so sore that I can barely move.
(case in point: it's 1pm and I still haven't been able to shower yet because the pain and exhaustion are so intense that I could just cry.)
**********
The intense depression is back. I'm starting to see a definitive link between crappy weather days and the days I feel the worst; physically, mentally and emotionally.
(Today we had a large pressure change and it's pouring; which will continue solidly through the next week...oh joy.)

I feel like the only thing I want to do is get into bed and stay there forever.

Amount of sleep: seven-ish hours. minimal rest though

Diet:
- Brunch: two servings hashbrown casserole, 4 slices super thin bacon, rice krispie treat,1 cup cranberry juice
- Dinner: fresh polish sausage, potatoes with cheese/butter/facon bits, 1.5 cups dr. pepper
- Snack 1: two snack-sized packets mini m&ms, 1 cup water
- Snack 2: nutella on bread, 2.5 cups water

Exercise/activities: none

P.O.T.S. symptoms experienced:
so far: pounding heart, arrhythmia, headache/migraine, extreme fatigue, body aches

Misc:

I found this saying, by chance, on a different website that I use:

"I am because we are."

- African aphorism

couldn't be more true right now.

Easter (and Hockey) Sunday

What a day.

My family hosted Easter this year, so everyone came over for brunch. Last night, my cousin got really sick; the kind that makes me panic. (If you know me, you know what I mean.)
He supposedly doesn't have something anyone can catch, but I'm still grateful that he didn't show today, just to be safe.
(Color me a bad person, but I just can't handle it and my immune system is awful.)

Brunch went well. The food was good, and it was nice to spend some (very brief) amount of time with my extended family. Then it was off to the Sabres game.

***********
The game was:
1. Very exciting. Nine goals at least made for an interesting game.
The Sabres really should have pulled out a win. We missed too many opportunities and our defense was awful. Losing in OT was crushing.

2. Slightly annoying. Not just because of losing; because there were three unbelievably obnoxious fans next to us. Offensive, obscenely drunk, and insanely obnoxious. It was the worst "other fans" experience that I, and my boyfriend, have ever experienced.
(together or apart)
It was so bad, it makes me never want to go to another game.
plus two of the fans were talking about how violently ill they've been at games...yikes for me.
I freaked about germs and catching it.
They then proceeded to have literally 20 beers. No wonder they're sick. Idiots.

Overall, it was an okay time.
The fans (near us) were awful, and we lost.
The Sabres have pissed me off, and I don't know if I'm going to watch Game 7.
But: My boyfriend and I got to spend all afternoon together, always a plus.

I'm partly proud of myself; because I made it through the day. I ate some, and managed to go out and enjoy myself (until we lost).

*********************
Now, however, I'm beyond exhausted. My body aches from the stress of the day, and the POTS symptoms from being so active. I'm nervous to eat because of the germ-potential (I showered immediately upon getting home), but I'm going to try anyways and hope I'll be okay.

Amount of sleep: about 6.5 hours

Diet:
- Brunch: hashbrown casserole, mixed fruit (blackberries, pineapple, strawberries), bacon...1 cup cranberry juice
- Dinner: leftover salmon and chips, 3 cups water
- Snack 1: snack pack of mini m&ms (tiny, from my Easter basket)
- Snack 2:

Exercise/activities:
- cooking for Easter
- Sabres game

P.O.T.S. symptoms experienced:
so far: cold extremities, pounding heart, arrhythmia, headache, anxiety, nausea, heartburn, lightheaded, achey.
I'm sure a lot of it comes from the elevation changes and the strain of climbing hundreds of stairs to get to our seats.

Misc:
continuing intermittant abdomen pain

Gusty Saturday

It's a gorgeous, although windy, day here in Buffalo. So, in the middle of cleaning, we took some time to enjoy it by blowing bubbles!
(Pretty cool ones- the new Crayola Color Wonder colored ones)

Amount of sleep: about 8 hours! (Although, I had quite a few nightmares, I did get a pretty decent amount of sleep and it feels like it. I feel pretty good so far today)

Diet:
- Breakfast: chocolate cupcake, 2 cups water (shame on me, but I need the calories)
- Lunch: leftover salmon, potatoes, pretzels 2 cups gingerale
- Dinner: hamburger, potatoes (felt pretty sick)
- Snack 1: nutella bread, 3 cups water
- Snack 2:

Exercise/activities:
- finish house cleaning for Easter
- laundry

P.O.T.S. symptoms experienced:
so far: cold extremities, pounding heart,arrhythmia, headache, anxiety

Misc:
continuing intermittant abdomen pain

(Good) Good Friday

Well, it's Good Friday and that means avoiding meat (for those who subscribe to religious practices- I don't, but I'm always up for salmon anyways!) and coloring Easter eggs.
So today that's exactly what we did!
For the most part, I felt better today than I have, but that could have been because of my surprise visitor :)

Amount of sleep: about 6 hours...with a surprise visit this morning :)

Diet:
- Breakfast: chocolate banana muffin, 1.5 cups milk
- Lunch: pasta roni, hershey bunny 2.5 cups water
- Dinner: salmon, potatoes, 1.5 cups ginger ale
- Snack 1: chocolate cupcake, 2 cups water
- Snack 2:

Exercise/activities:
- house cleaning
- grocery store and various other fun with my surprise visitor!

P.O.T.S. symptoms experienced:
so far: nausea, stomach upset, cold extremities, pounding heart,arrhythmia, headache

Heart rate p.m. :
I keep forgetting to do this. Must work on it.

Misc:
awful abdomen pain again (same one I've been dealing with since my surgery)...way worse than it's been lately.

Celebratory Thursday

Still trying to recover from yesterday's test. I'm disheartened by the toll it takes on my body, but there's nothing I can do about it but try to press on.
I have a birthday party today, so I made cupcakes to help celebrate.

Here they are...aren't they adorable?

Amount of sleep: about 6 hours...a lot of dreams/nightmares

Heart rate a.m. :
laying down: 91/53 HR:60
standing: 83/66 HR:101
symptom: 88/52 HR:60 arrhythmia
93/57 HR:77
111/64 HR: 81
101/68 HR:94
93/67 HR:91 arrhythmia

Diet:
- Breakfast: two chocolate banana muffins, 1.5 cups water
- Lunch: macaroni and cheese, half cup ginger ale
- Dinner: beef on weck with fries and dr. pepper (which I'm grateful for because it really helped my migraine)
- Snack 1: hershey bunny, 3 cups water
- Snack 2:

Exercise/activities:
- nothing strenuous, only cupcake baking....two rounds because I forgot the chocolate chips in the first batch and, seeing as chocolate-chocolate chip cupcakes were specifically requested, I had to make a new batch.

P.O.T.S. symptoms experienced:
so far: nausea, stomach upset, cold extremities, pounding heart, migraine, trembles

Heart rate p.m. :
laying down:
standing up:

Misc:

G.E.T. Wednesday

Today was my Gastric Emptying Test to check for Gastroparesis.

In the grand scheme of things, it wasn't so bad.
I went there, and had to eat a cup of oatmeal laced with radioactive material. Then I had to lay down inside a weird CT scan machine (very tight fit) and had to lay there and be scanned continuously for two hours.

Thankfully, the tech was very nice and helped me change my cds; I'd brought some old radio broadcast murder mysteries (!) so I was (relatively) entertained for the whole two hours.
The results should come back in 3-4 days.
Right now, I'm exhausted.

Amount of sleep: about 6 hours, broken up often by thunder and lightning and getting up early to eat something before my fast.

Heart rate a.m. :
off because of testing

Diet:
- Breakfast: n/a
- Lunch: n/a
- Dinner: turkey pot pie, mushrooms, corn, potatoes, green beans
- Snack 1: cheddar rice cakes, gatorade 2.5 cups
- Snack 2: nutella bread, 2.5 cups water

Exercise/activities:
- n/a

P.O.T.S. symptoms experienced:
impossible to tell because my eating schedule is thrown off.

Heart rate p.m. :
sitting: 92/64 HR: 78

Misc:
- o.b.

Bleak Tuesday

After a night of really rough sleep, I'm up and trying to get into fighting shape.
My arrhythmia is out of control this morning, and my BP is really low so I'm kind of concerned about doing too much today...so we'll see what happens.

Amount of sleep: about 7 hours, quite a few dreams...sweating and nausea

Heart rate a.m. :
symptom: 95/48 HR:77 arrhythmia
79/57 HR:86 arr
90/50 H:73 arr
79/28 HR:136 ---holy hell. something I definitely have to talk to the doctor about.
87/59 HR:111
103/69 HR: 76
92/56 HR: 73

Diet:
- Breakfast: two chocolate banana muffins, 2.5 cups water
- Dinner: steak, potatoes and mushrooms, 2 cups dr. pepper
- Snack 1: pretzels, gatorade 1 cup
- Snack 2: nutella bread, 2 cups water

Exercise/activities:
- tried yoga; not possible.

P.O.T.S. symptoms experienced:
so far: arrhythmia, pounding heart, migraine, dizziness

Heart rate p.m. :
laying down:
standing:

Misc:
- o.b.

After my huge BP drop, I'm back to bawling my eyes out.
I'm scared.
I'm scared of being home alone.
I'm afraid my heart will give out.
I'm angry that I'm in my twenties and have to worry about this at all.

Dreary Monday

Today's been a down-right awful day. I've tried holding my own for almost a week, but I finally cracked. I found out someone I love received good news on the phone, and I bawled my eyes out because I'm so unhappy that I can't even feel glad for them.
(Although I am- they deserve it!)
It's just gotten to be too much piling on all at once, and I'm falling apart.

Amount of sleep: about 6 hours

Heart rate a.m. :
laying down: 87/46 HR:56
standing: 93/69 HR: 88
symptom: 94/58 HR:79 arrhythmia
88/67 HR:71
81/52 HR:95

Diet:
- Breakfast: chocolate banana muffins, 2.5 cups water
- Lunch: pasta with olives and italian dressing, 1 cup water, 1 cup ginger ale
- Dinner: sesame chicken and noodles, 2 cups water
- Snack 1: handful hershey eggs, 2.5 cups water
- Snack 2: nutella bread, 2 cups water

Exercise/activities:
- 20 minutes easy pilates

P.O.T.S. symptoms experienced:
so far: nausea, stomach upset, cold extremities, exhaustion, depression, numbness

Heart rate p.m. :
forgot to do this because I fell asleep on the couch.

Misc:
- o.b.

Snowy (?!?!) Sunday

It's an ugly slushy day here, so we're trapped inside.
I'm beyond exhausted from a very rough night of sleeping, so I'm hoping to just chill out and try to plan my week.

Amount of sleep: about 8 hours. Not very restful because of a few nightmares

Heart rate a.m. :
was up too late to take this reading
afternoon: 95/54HR:65
symptom: 91/51 HR:75 arrhythmia

Diet:
- Brunch: two chocolate banana muffins, 2.5 cups water
- Dinner: roast chicken, mac and cheese, 2 cups dr. pepper
- Snack 1: handful hershey eggs, 2 cups water
- Snack 2: nutella bread, 2.5 cups water

Exercise/activities:
- cleaned up after the dogs
- took out the garbage

P.O.T.S. symptoms experienced:
so far: arrhythmia, pounding heart, difficulty breathing, cold extremities, exhaustion

Heart rate p.m. :
95/62 arrhythmia

Misc:
- o.b.

Suffocating Saturday

Amount of sleep: about 6 hours...badly fragmented from a full-out bloody nose.

Heart rate a.m. :
laying down: 91/56 HR:70
standing: 80/61 HR:99 arrhythmia
symptom attack: 93/55 HR:72 arrhythmia
92/53 HR: 82 and arrhythmia

Diet:
- Breakfast: polish doughnut, glass of milk
- Lunch: half a mcdonald's happy meal, small dr. pepper
- Dinner: pasta with olives and italian dressing, 3 cups water
- Snack 1: tiramisu cup, 3 cups water
- Snack 2: handful hershey eggs, 3 cups water

Exercise/activities:
- played with the dogs
- decorated/cleaned for Easter

P.O.T.S. symptoms experienced:
so far: arrhythmia, pounding heart, tightness in chest, difficulty breathing, cold extremities, exhaustion

Heart rate p.m. :
laying down: 84/52 HR:62
standing: 97/59 HR: 83

Misc:
- o.b.

Windy Friday

Still having a hard time today.
I feel absolutely miserable and, honestly, I can't shake off the anger and unhappiness.

Amount of sleep:
about 6.5 hours...very interesting dreams too

Heart rate a.m. :
I had to get up and go out, so I completely forgot to do this.

Diet:
- Breakfast: polish doughnut/pastry, 1 cup water
- Lunch: mac and cheese, 1.5 cups water
- Dinner: bacon wrapped steak, boiled salt potatoes, small cup dr. pepper
- Snack 1: 1 cup water
- Snack 2: 1.5 cups water, handful hershey eggs.

Exercise/activities:
- ran errands
- house cleaning

P.O.T.S. symptoms experienced:
so far: shaking, weak, heart pounding, depression

Heart rate p.m. :
completely forgot this too. Well, moreso just didn't care.

Misc:
- O.B.

Hypovolemia Thursday

Yesterday I started feeling really awful after having my blood drawn, and last night I got horribly sick. I'm not sure if it was hypovolemic shock (possible because I'm so thin and have POTS) or if it was just a really bad POTS attack. Either way, I was sicker than I've been in well over a year.

I cancelled my test for gastroparesis because I just feel too awful.

I'm spending the day doing almost nothing.

Amount of sleep:
about 4.5 hours

Heart rate a.m. :
laying down: 93/55 HR 73
standing: 79/61 HR: 116
symptom attack: 86/61 HR:82
89/57 HR:93
109/70 HR:93
78/49 HR: 82
99/64 HR: 69
95/68 HR:90

Diet:
- Lunch: steak, potatoes, small glass dr. pepper.
- Dinner: turkey burger on a bun, sauteed mushrooms and green beans, small glass dr. pepper
- Snack 1: 2 cups water
- Snack 2: 2 more cups water

Exercise/activities:
- rescued a bird from our flue

P.O.T.S. symptoms experienced:
so far: nausea, pain, diarrhea, shaking, lightheaded, weak, heart pounding, depression

Heart rate p.m. :
laying down: 93/50 HR: 61
standing: 84/59 HR:77

Misc:
- O.B.
- terrible OCD day.

Bloodless Rainy Wednesday

Today I had to go back for my bloodwork.
I got there at 7:45am and waited for over an hour. The cortisol check has to be done between 7am and 9am and I was taken back at 8:45am...just in the nick of time!

Based on the bloodwork orders, they wanted TWENTY THREE vials of blood. Holy cow.
(here's a picture of the first 19 vials, the nurse left to get four 'frozen' ones from another room)



The nurse looked at me and said she didn't feel comfortable taking that much from me so we filled one doctor's order only: still more than eleven vials. (I think 16 was the final count...took away seven, and added a couple from a different room)

The nurse is going to contact the second doctor who ordered bloodwork, to see if any of the overlap can be taken care of by this first round of tests before I go give any more blood.

Amount of sleep:
about 5.5 hours

Heart rate a.m. :
laying down: 90/56 HR:92
standing: 80/57 HR: 147
symptom attack: 80/56 HR:87

Diet:
- Breakfast: big bowl of corn chex with lactaid and brown sugar. extra glass of milk. (about 2.5 cups total)
- Lunch: rest of roast beef and fries, small glass dr. pepper
- Dinner: stir fry beef, potatoes, green beans, small glass gingerale
- Snack 1: pretzels and 2.5 cups water
- Snack 2: handful m&ms and 2 cups water

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: pounding heart, irregular heartbeat, cold extremities, lightheadedness, hard to breathe, exhausted, heart pounding

Heart rate p.m. :
laying down:95/60 HR:61
standing: 82/56 HR: 94

Misc:
- Rainy day, making me feel exhausted and breathing is tough

Frustrating Tuesday

I received a call back from the POTS doc and she agreed that my blood pressures are too low to take a beta blocker like Atenolol. With blood pressures as low as I've recorded it could have ended up stopping my heart! I'm very grateful that I talked to the pharmacist before I started taking anything.
(It's not the POTS doc's fault either, by the way, because when I was in the office, I was nervous and my BP was in the 110s/60s which would be more than acceptable for taking Atenolol)

On to today's frustrating events...

I had made an appointment for this morning to go get my massive load of bloodwork done for both the cardiologist and the POTS doctor. (Two massive lists of tests!)

So, I got there at 9:15 for my 9:30 appointment and they took me early...score! right?
I wish.

I go back with the phlebotomist and she starts to work up the orders before drawing my blood and goes, "We can't do this today. You need to have your cortisol checked in the morning and that means the blood's drawn between 7 and 9 am, didn't someone tell you that?"
Seriously? No one had told me that.

Yep...I was fifteen minutes after the cut off point so they couldn't do it. I have to get the a.m. and p.m. cortisol tests done during the same day, so I have to go back tomorrow.

I also have to do a 24 hour urine test. Know what that involves? Peeing in a rather large jug...all.day. Yes...all day. So, tomorrow when I go back, I get to take them a huge bottle of piddle. Gross and humiliating.

Tomorrow I have to take that back, get my ten vials of blood drawn in the morning, then go back at night for another blood draw. Yippee.

Sigh.

Amount of sleep:
badly fragmented 6 hours

Heart rate a.m. :
laying down: 96/58 HR: 86
standing: 84/62 HR:83
Not the most accurate reading...I forgot to take my BP this morning, so these readings are after I was up and about running errands.
symptomatic: 91/66 HR:106
93/50 HR: 82
85/54 HR: 97
88/50 HR: 83
82/ 51 HR:122

Diet:
- Brunch: salt bagel with extra cream cheese, 1.5 cups cranberry juice.
- Dinner: roast beef on kimmelweck, french fries and dr. pepper.
- Snack 1: handful hershey eggs, 3 cups water
- Snack 2: 3 more cups water.

Exercise/activities:
- doctors twice was quite enough thank you.

P.O.T.S. symptoms experienced:
so far: short of breath, upset stomach, irregular heartbeat, cold extremities

Heart rate p.m. :
laying down: 95/56 HR:69
97/54 irregular beat detected
standing: 89/56 HR: 78 irregular beat detected.

Misc:
- The surgeon also feels that my pain is from adhesions, and says that I have to wait even more time to see if the pain in my groin (from my surgery) will go away. If it's not better in two months I have to go back.

Stormy Monday

Having some serious rage today over having to constantly monitor stuff and having to go through all of these friggin tests. I have to take my blood pressure four times a day, and any time I'm symptomatic. I also have to go for the gastric emptying test.

That is scheduled for Thursday.

Plus, I'm a little concerned about starting Atenolol. I picked up the prescription the other day and the pharmacist warned me to absolutely not take it if you have low blood pressure because it's a beta blocker. I have low blood pressure.

Now, I know that the doctor who prescribed it is aware of how low my blood pressure is, and that she's also a specialist in this condition. But still...I've left her a message just double checking with her that this is the route she wants to take because the warning freaked me out a little bit.

Amount of sleep:
pitiful. The dogs were horribly annoying all night. Went to bed at 12, up at 1:30, up at 3, up at 5, up at 6:15, then up at 9.

Heart rate a.m. :
laying down: 98/55 HR: 76
standing: 86/64 HR:134
symptom attack: 77/55 HR 90, 82/45 HR:98


Diet:
- Breakfast: big bowl of rice krispies with lactaid and brown sugar. extra glass of milk. (about 2.5 cups total)
- Lunch: turkey, stuffing, cranberry sauce, little dr. pepper.
- Dinner: steak, potatoes and green beans, 2.5 cups water
- Snack 1: pretzels, small glass dr. pepper
- Snack 2: handful hershey eggs...6+ cups of water over the course of the night

Exercise/activities:
- fixed the backyard fence

P.O.T.S. symptoms experienced:
so far: pounding heart, short of breath, extremely low blood pressure, inability to breathe

Heart rate p.m. :
laying down: 88/61 HR:59...also, irregular heartbeat
standing: 87/64 HR: 86

Misc:
- Feeling pretty off today. It's warm and incredibly humid, so it's very hard for me to breathe.
- cyst pain seems better

Gloomy Sunday

Amount of sleep:
~7 hours. not restful though with lots of dreams

Heart rate a.m. :
laying down: 83/55 HR:78
standing: 71/55 HR:114
(after one minute: 98/54 HR:104)

Diet:
- Breakfast: two waffles with butter, fruit, 1.5 cups cranberry juice
- Lunch: potato pancakes with cheddar cheese, sour cream, bacon bits and scallions, 2.5 cups water
- Dinner: turkey breast, mashed potatoes, green beans, stuffing, glass of dr. pepper
- Snack 1: handful hershey eggs, 1 cup water
- Snack 2: two mini monkey breads, about 3.5 cups water

Exercise/activities:
- gave the dogs a bath

P.O.T.S. symptoms experienced:
so far: cold extremities, pounding heart, short of breath, aches, light headed, headache, low level anxiety.

Heart rate p.m. : totally forgot. have to get better at this.

Misc:
completely sidelined today with, what I can only hope is, an ovarian cyst

Sunny Saturday

Well it looks to be a gorgeous day here in Buffalo...and I'm looking forward to enjoying it!

Amount of sleep:
~6.5 hours. not restful though with lots of dreams

Heart rate a.m. :
laying down: 96/59 HR:77
standing: 82/53 HR: 140

Diet:
- Breakfast: two waffles with butter, 1 cup chocolate milk
- Lunch: leftover steak with oven roasted potatoes, fruit, 2 cups water
- Dinner: roast chicken drumsticks, green beans with scallions, mushrooms, rice
- Dessert: strawberries, brown sugar and sour cream, 2 cups water
- Snack 1: handful hershey eggs, 1 cup milk
- Snack 2: mixed handful or cheddar chips and cheddar rice cakes. 1 cup lemonade, 1 cup water

Exercise/activities:
- went shopping for Mom's birthday
- sat out in the sun for a short time until POTS cropped up

P.O.T.S. symptoms experienced:
so far: cold extremities, pounding heart, short of breath, nausea, aches, light headed, dizziness

Heart rate p.m. :
laying down: 82/40 HR: 68
standing: 91/66 HR: 108

Misc:
cyst in my wrist is swollen

April 8th

Amount of sleep:
~6.5 hours. not restful though with lots of dreams

Diet:
- Breakfast: two waffles with butter, 2.5 cups water
- Dinner: steak with oven roasted potatoes, 4 cups water
- Snack 1: handful hershey eggs, 3 more cups water
- Snack 2: sour cream and cheddar chips, 1 cup dr. pepper

Exercise/activities:
- full house cleaning (~60 minutes)

P.O.T.S. symptoms experienced:
so far: heartburn, weakness, extreme fatigue, headache, cold extremities, pounding heart, short of breath

Misc:
cyst in my wrist is swollen

April 7th

Amount of sleep:
~ 6 hours in two 3 hour spurts. (I had to take my mom to the airport at 5)

Diet:
- Lunch: big bowl of beef stew (beef, baby corn, mushrooms, potatoes), glass of Dr. Pepper
- Snack 1: sour cream and cheddar chips, 3 cups water
- Dinner: steak hamburger patty, mac and cheese, glass dr. pepper
- Snack 2: hershey eggs, 3 cups water
- More water (3 more cups)

Exercise/activities:
- short walks with both of my dogs (~30minutes total)
- weeded/raked the backyard gardens (60+ minutes)
- planted some saplings











P.O.T.S. symptoms experienced:
so far: nausea, heartburn, stomach upset (upper and lower), blood pooling, cold extremities, disorientation

Cardiologist vs. POTS Specialist

As of today, I’ve seen both a cardiologist and a POTS specialist. Eventually, I will have to decide between them. Here’s a brief breakdown so far…

Cardiologist

Course of action:

• wants to try Midodrine, bloodwork, another stress test and a heart echo.

Pros:

• Seemed knowledgeable and caring. Listened to my concerns and actually believed me.

Cons:

• Extremely long wait time/ office disorganized
• Has yet to answer a phone call. I’ve called his office twice to ask questions, and haven’t had a call returned yet. On top of the wait time, I really don’t like this

POTS Specialist

Course of Action:

• Wants to try Atenolol, use compression stockings, bloodwork and stomach emptying test for Gastroparesis (GP)

Pros:

• She’s done a lot of research and clinical trials on POTS. She consults on drug side effects studies. She’s even been an expert witness on the topic.
• was on time and prepared. (huge plus)

Cons:

• None that I can see yet. Although I haven’t tried to call with a question or anything like that.

How I’m feeling so far:

I’m not entirely sure. I had high hopes for the cardiologist, but his office doesn’t return phone calls, nor is anyone ever in the office. I’m really angry about that. All I want to know is if I should get my testing done before I try the new meds. Yet they can’t return that call. It really upsets me because I should be able to get an answer on that. It totally undermines his credibility and my faith in him.

My only concern is that maybe something is wrong with my heart or cardiovascular system…and that, by walking away, I would never know. I hate to be a hypochondriac, but I’ve come this far and had so many tests already…I’m wondering if I should at least have the stress test/echo and find out.

What I’m debating doing is getting all the bloodwork done, then possibly having the stress test/echo done anyways, and the stomach emptying test. I can see how they all turn out, and then make my decision.

Today's the day...

I saw the POTS specialist this afternoon and it was interesting to say the least.

She went over the results of all my previous testing, especially my tilt table test, and also went over my symptoms. She said that everything was definitely consistent with POTS.
_{(Which I knew from my own research, but it’s still nice to have it definitively confirmed.)}

She gave me a neurological exam, which I performed pretty well at, and she doesn’t think any brain scans are necessary at the moment.

One test she is sending me for (outside of bloodwork) is a stomach emptying test. You eat something with radioactive stuff mixed in, and they take pictures to see how long it takes to move through, and out of, your stomach. She thinks I may have a condition called Gastroparesis that’s causing my nausea every time I eat.

Gastroparesis is a partial paralysis of the stomach that makes emptying it relatively difficult. Symptoms (that I have that she feels are consistent with GP) are: nausea, feeling full after only a few bites, weight loss, abdomen spasms, heartburn, GERD,and lack of appetite.

GP is most common with autonomic neuropathy, a type of which is POTS. She said there’s a good medication for it that can also help with the symptoms of POTS, which would be lovely, because nausea is one of my most debilitating symptoms. It’s also one of the reasons that I can’t gain weight.

She also disagrees with the cardiologist about taking Midodrine. She says it’s an option, but she wouldn’t prescribe it at this stage in the game. She would prefer that I try Atenolol (a beta blocker) instead. Starting with half of the smallest dose.

She’s also like me to try compression stockings for the blood pooling.

Amount of sleep:
~8 hours. not restful though with lots of dreams

Diet:
- Brunch: two waffles with butter, chocolate milk (woke up with awful heartburn/upset stomach again. I'm not sure why...so I ate later, around 11:30am)
- Dinner: roast chicken legs with plain pasta
- Snack 1: sour cream and cheddar chips, 3 cups water
- Snack 2: handful hershey eggs, 2 cups water

Exercise/activities:
- tried to do 'beginners' Pilates this morning but just couldn't make it through.

P.O.T.S. symptoms experienced:
so far: nausea, heartburn, stomach upset (upper and lower), weakness, extreme fatigue, headache, pounding chest, blood pooling, cold extremities

Schedule Change

Instead of going to the POTS specialist in two weeks, I'm going tomorrow! They had a cancellation and called to ask me if I'd like to take it, and I jumped on it.

Amount of sleep:
~7 hours...badly fragmented though, with horrible nightmares.

Diet:
- Breakfast: small glass of milk. (wasn't feeling great when I got up...probably the weather shift)
- Lunch: steak patty, mac and cheese, glass of dr. pepper, some hershey eggs.
- Dinner: homemade pizzas with cheese, olive oil, olives, mushrooms...3 cups water
- Snack: sour cream and cheddar potato chips, 3 cups water

Exercise/activities:
- half yoga dvd. ~20 minutes worth
- went to the store (twice) and ran errands

P.O.T.S. symptoms experienced:
so far: dizziness, cold extremities, headache, nausea (with eating), lower stomach upset, fatigue, muscle aches, pounding heart, heart burn, memory lapses, restless legs

Ever onward

I've been away from this for a long time. Mostly because trying to get back on my feet after my surgery has been a longer process than I thought. The recurrent pains in my abdomen and groin aren't normal and my doctor feels there's nothing he can do about it, so I'm going back to the surgeon in less than two weeks.

In the meantime I've been doing a lot of debating in how I can make the best use of this blog. I think for now I'll add these things to my posts:

Amount of sleep:

Diet:

Heart rate a.m. :
laying down:
standing:

Exercise/activities:

P.O.T.S. symptoms experienced:

Heart rate p.m. :
laying down:
standing:

Misc/Life Stuff:

I'll be taking my blood pressure for the cardiologist twice a day (as you can see) and I'll start recording it when the monitor I've ordered comes in.

exhaustion

Last night, even though the doctors appointments went well, I was slightly put out. This road to find relief has been a long one and, to be honest, I’m tired.

I’m tired of seeing 50 doctors a year. I’m tired of the unbelievable cost it’s racked up. I have no savings anymore, and am barely surviving on unemployment. I’m incredibly grateful for it (although I’m not sure I deserve it) because without it I wouldn’t have even found POTS.

I’m tired of the poking and prodding and invasive procedures. I know they’re for my own good, which is why I keep allowing them, but I can’t ignore the toll they’re taking on my body. Colonoscopy, endoscopy, more bloodwork than blood in my body, sonograms, ultrasounds, probes into my stomach through my nose, probes to check my throat, probes to check my esophagus and throat…the list goes on and on. Now a heart monitor and buying a blood pressure machine and checking it several times a day.

I’m tired of choking down pills (something that’s extremely difficult for me because I have no motility in my esophagus) and now they’re going to add even more pills to the mix. Plus they’re also expensive to me right now. $50 in pills a month is hard to come up with when you can’t work.

I’m tired of the boring diet that is pretty much the only way I can function. The intolerances POTS has brought up have totally changed my life. I’m tired of the nausea and the bathroom issues.

I’m tired of being trapped in this cage of a body most days. Unable to even connect to my peers because they’re out drinking, are partying and in school, are working. Most of them are out doing what they want, whenever they want; even on a whim while I have to plan my days (foods, movements, activities) and carry them out, to the minute, days in advance just to be able to do something on the one day I want to.

I’m put out that this could be my life for the rest of my life.

Yes, I know, others have it much worse than I do. I know that. But it’s already been a long journey, and it feels like I’m just in the middle of it. I climbed the first mountain, and found POTS after 2+ years of testing.

Now, I’m at the base of yet another mountain; the most important one. This uphill climb is filled with more tests, more meds, more expenses and more doctors.

I know, in the end, it will hopefully have been worth fighting through; but what can I say? I’m tired.

Thankfully, I also suffer from tenacity and am not about to give up yet.