Out with the old; in with the new.

Yesterday the receptionist at the 'new cardiologist's office called me and said that she found someone else in their group that would take me on as a patient. He's just joining the group in July and I'm seeing him on his first day July 19th. I'm anxious to see how it will go.I'm not exactly comforted by the fact that he's new, so I'm going to try and do some research on him to see what his history is like.
(I'm extremely irritated that none of the original participants in the group would take me, but whatever.)

All I can say is that he better have an idea of what POTS is and what I'm talking about or I'm going to be very upset.

I did call The Jerk's office to cancel my follow up with him. I told the woman I wasn't sure if I was ever coming back based on his treatment. I felt bad doing it because his employees are very nice people; but his attitude and treatment weren't something I was going to tolerate any longer. Plus, his care wasn't helping me any. So that's that.

I wish I could say it was a relief, but right now it's too soon to tell.
If this new guy works out, then I'll be relieved; but for now I'm still just stressed about finding someone new who has knowledge about POTS.

Tomorrow, I'll be going to my GP's office to pick up my copy of my records and then I'll spend the rest of the day calling to get a free consultation or two from a lawyer.

***

I need a vacation.

What a joke.

Today I got a call from the office of the person I had hoped would be my new cardiologist. He rejected me.

Why? Because I was affiliated with "The Jerk".

You have got to be kidding me!!

At least it feels like progress...

Today, I made the rounds with phone calls again and actually had a pleasant(ish) surprise- my records were finally transferred from The Jerk to my regular GP. Hallelujah!

I immediately asked the lady who works in the records department (who I owe a fruit basket or something to by now just for taking my repeated phone calls) to send my testing records and results to the new potential cardiologist. She called me back once she'd done that; so I feel better knowing there's progress being made there.

I also asked her to get a copy of my complete records (not just tests/results) for the last five years for my own personal files. She said it costs $.75 per page so I can only imagine what this is going to run me. (sigh) She should have them for me by the end of the week.

In the meantime, I'm going to call around for lawyers to see if any of them will give me a free consultation on this matter. If I can set up one or two for next week, I'll have my records in hand and I can get a definitive answer on the lawsuit situation. Again, small step but I feel progress is being made.

I've also talked to my boyfriend and we are going to sell off some of our stocks to make sure I can cover my bills for this month. It's breaking my heart to do it, but it needs to be done and I'm grateful to have invested it a few years ago so I can use part of it now. It will ease the stress only minimally, but I'll take any improvement I can.

***

On the more-enjoyable part of the plus side:

• Over the weekend I spent a few hours at my boyfriend's house hanging out with his new roommate and a friend of mine (roommate's girlfriend). I felt pretty poorly for most of the night, but I'm glad I chose to go. It was my first time 'hanging out' with anyone, for an extended period of time, in over three years. A big deal for me.
  

• This morning I felt fantastic; better than I have in a long time...I got up early and went hunting for the perfect present for a friend of mine (I have something specific in mind) and then I did an epic 2-hour shop at the grocery store. Sadly, the feeling-well was fleeting; when I got home I unloaded everything and then was completely incapacitated for the rest of the day. I actually passed out in a chair in the afternoon- which is something that I NEVER do. (Hell, I get maybe two hours of sleep a night if I'm lucky because my meds-induced insomnia is so bad...so to be so tired I drop off just shows how exhausted I was.) Bad weather is moving in so tomorrow will be rough, but today I did it and that's what counts.
  

Heartsick

It's days like this that make me really wish I could just give up entirely.

I took a shower and I was so tired, so tachycardic, so sick afterward that I just sat on the bed, looked at this body, my body, that won't do what I want it to - that sometimes can't do what I need it to - and cried.

Not giving up just yet.

I told my mom about the lawyer thing when she got home; as I was really upset about it.

She surprised me by having the opposite reaction I had expected her to have.
In my mind, she told me to suck it up, deal with it and forget about it...but she actually reacted in a different way.

She thinks I should get a copy of all of my records to have in my personal possession; then I should contact a lawyer (either this one, or another one) that will allow a free consultation and show them all of my records and see what they say. In her mind, when I officially started to fall ill is debatable as I had a horrible round of the stomach flu around the same time...so the timing might actually be more in my favor than they're giving me credit for.

She also feels someone needs to see the actual proof (my records) of my illness and the timeline, along with hearing more than five minutes worth of my story, before decided whether or not we can proceed with this because a phone consult isn't exactly detailed; nor are there any concrete facts and documentation to be shared and gone over.

In my mind, she's right. I talked to a paralegal for all of five minutes and that's not sufficient time to give the matter the full attention and weight it deserves. She's also right that I should have someone go over my records in person, in detail before they come to any conclusion about deadlines I've missed. (or anything else for that matter...like whether or not they'll represent me.)

She's also wondering what they would say about other things that have gone on in the last three years that I've been trying to figure out what the hell is wrong with me. (Don't want to go into more detail here, just in case legal action can/will be taken...but if you're curious you can ask.)

So, I've decided to get a copy of my records for myself (I have to call them tomorrow anyways to make sure the jerk cardiologist finally sent them for real this time) and I'm going to hopefully find a lawyer or two who will give me a free consultation to hear me out, and go over everything with me.

If, at that point, they say there's nothing that can be done then I'll have to accept that. I know it's an extremely long shot anyways. But, this is my quality of life that I'm fighting for; and if these people are responsible for doing this to me...for giving me this condition...then I owe it to myself to see this through to the end; whatever that might be.

I may have to give up eventually; but I'm not giving up just yet.

End of the Line.

I received a call this morning from a paralegal who works for the lawyer I'd called Monday. She took my information and asked me all kinds of questions so she could talk to the lawyer, and see if he would take on my case.

She called back about an hour later and said that he also believes we're beyond the statute of limitations so they won't be taking on my case.

The End.

"Under the Weather"

Up until I started getting sick, and my POTS progressed to where it is now, I never put much stock in the phrase "under the weather".

Now, it's a completely different story. It's interesting to me how big of a role the weather plays in how I feel and how I function. It's funny how some days I honestly am "under the weather" (or at least majorly impacted by it.)

Today, for example, it's hot and unbearably muggy. You can't even breathe when you walk outside.
A 'normal' person would find this to be annoying and a minor inconvenience.

For me, the pressure is physically painful.
I can feel is weighing on my limbs and my chest to the point where standing up makes my heart race and ache.

(You know it's bad when my sister looks at me and goes "Wow, you really don't feel well today do you? You can tell")

It's supposed to start raining and storming tonight, which will last all week long. Looks like I'll be "under the weather" for a while :/

***

On a separate note, the cardiologist's office called me back. Her (the office manager's) exact words were that he thought my purple hand was a neurological issue so he wrote it off; but now that he neurologist says it's cardiac-related, he wants me to come in for another visit.

My thought: When Hell freezes over.

After my last appointment, and everything since that, you have the gall to think I'll come back? You must be out of your mind!

I said I would call back if I wanted to make an appointment. Which was partially a lie.
I will call back, but that will be to end my association with this doctor once I have a new cardiologist and for nothing more.

Fruitless Labors

Today I decided to really try and knock some things off of my 'to do' list that have been gnawing at my insides. Things I hoped to make some headway on and the progress (or lack of progress) I made on them...

***

1. Find (and talk to) a lawyer:

First, I spent over an hour on the phone talking to the Bar Association trying to find a lawyer who might have some insight into my situation. While the POTS doctor feels I've missed the boat on filing a claim against the makers of the vaccine that she believes caused my POTS, I want an opinion from a legal professional. Without it, I would always wonder "what if".

So, I called our local Bar Association lawyer referral service. They are supposed to listen to your situation and be able to refer you to a lawyer who takes cases based on your need. They told me that mine would be considered "product liability" and gave me the name of a lawyer; who I promptly called after disconnecting with the Bar.

When I talked to him, he told me that he's never even heard of POTS (no shock there), and he's never heard of the vaccine that I had either. Now, that irritated me. It's a popular vaccine that's being recommended for everyone to have...how can he not have ever heard of it?? He apologized and said that he couldn't help me as he had no idea about either of those things.

I wasn't willing to give up that easily, so I called the Bar Association back. I got the number of another lawyer; and I called his office. His secretary damn near ripped my head off demanding to know what I wanted. She then told me that he was in court today and put me through to his voicemail so I could leave him a message myself; which I did. Who knows if he'll ever get back to me. Hopefully he'll be able to help.

***

2. Find a new Cardiologist...

The next thing I did was to call the office of a new cardiologist that I hope will take me on. He was actually recommended to me by one of my mom's coworkers (through my mom).

I looked him up through my insurance company to make sure he would take my insurance (he does) and to make sure that he was accepting new patients. (According to my insurance company, he was.)

So, I gave them a call. The receptionist told me that he wasn't accepting new patients. (ugh, seriously?) The only way he'll accept new patients is if they're referred by a doctor (I was seeking him on my own) and if there was a medical reason. She asked if I had a cardiac condition (yep I do!) and said "great!" (I laughed at that...but I knew what she meant lol) and said that if I had my records sent there, she would put them in front of him, have him look at them, and call me back to let me know if he would take me on as a patient or not. I figured that was no big deal, as I'd had my records from the jerk cardiologist sent to my GP last week. I could call the GP and have them sent as soon as I got off the phone with the new cardiologist's office.

I called my GP's office to make sure that the records from the jerk cardiologist had transferred...and guess what! They never sent them. Why I was even surprised is beyond me.

So, I called the jerk's office and talked to the office manager, who was actually out with a family emergency so I couldn't be too upset. She said the records would be there by Weds come Hell or high water. (They damn well better be, or I will raise holy Hell. Be warned.) I asked what the doctor had to say about my purple hand scenario, and she said he didn't even look at it. (Of course he didn't. God I'm starting to reallllly hate him.) She would have an answer to that tomorrow. (She damn well better.)

The records will be at my GP's by Wednesday, and then I will send them to the new cardiologist. Hopefully, he will take me on. I'm not too worried about the meds side of things because the POTS lady can take care of that. I *am* worried about why my circulation is uneven. The POTS lady told me that she has no idea and that's strictly something I would need a cardiologist for; otherwise I wouldn't bother seeking another one out.

At least the wheels are set in motion for that. There isn't anything else I can do before Weds, although I *will* cause problems tomorrow if that lady doesn't call me back.

***
3. Figure out what the hell is wrong with my garden.

Okay, this one's not all that important, or related to POTS...but it's been eating at me and, seeing as I struck out at everything else, I figured I would get this checked off lickety-split...all I had to do was get our soil tested to find out what keeps killing off our plants. (Three rounds and counting...)

I called our local nursery, and apparently no one tests soil anymore but I can get a kit to test it myself for $20. Well, that just torqued me off...both because it's inconvenient (even if I test it, I won't know what the hell to do about it!) and because I don't have $20 to spend on a kit. My dreams of a charming little garden are given up for this year. ~sigh~

***
4. Take back our defective brand-new grill

We bought a nice brand-new grill a couple of weeks ago and when we went to use it last week, it burst into flames, inside and out. The entire thing turned into a giant fireball that almost burned down the deck that my dad and I built together by hand. (I would NOT have been a happy camper then.)

We called the company that sold it to us, and they apologized profusely and told us that they would replace it if we brought it in. Nice and simple: bring it in, get new grill. By far the easiest thing to get done right?

Yeah.Right. I should have taken the cue from the rest of my day and not bothered.

Boyfriend came over to help me return the grill (too heavy for little me) and wouldn't you know it: it doesn't fit in the car. (It got here in a different car than mine)It didn't fit in his car either, so even that didn't get accomplished today. Although, thankfully, we had a nice (but too brief) dinner together. That, and that I got a surprise in the mail (yay!) are the only things that made this day the tiniest bit a success.

*****

Now, I'm exhausted. Last night, I got a grand total of two hours of fractured sleep, and (believe it or not) that was a lot of things to do in one day.
Oh, I also watered the gardens twice and worked on a project.

It's just frustrating to have done so much, and yet have accomplished absolutely nothing.

But, I tried... and that counts for something right?

The hardest parts...

There's so much that I want to say. That I feel. That I just can't share.
That I just don't feel right sharing.

My depression and fear from POTS has really flared this time. Even though there are so many sweet people who have checked in on me the last day or two, I just want to hide away completely. I feel so completely useless...to my family, to my friends and to society.

Today, I feel like a failure. I've spent the last (almost) week laid up with a terrible soul-sucking migraine and today I decided I was going to go out. I took a long-ish walk with my oldest dog, and played outside with my youngest. It was a perfect weather day. I somehow got volunteered to go get dinner for everyone, and as I'm driving I start to feel really sick. I've felt sick ever since; though I eventually managed to eat dinner. (This sometimes happens to me when I ride in the car because of the pressure changes.)

It's heartbreaking. Even on the most perfect of days weather-wise (which is a big factor for me), I still am incapable of going out and doing things. It's upsetting.

I was talking to a friend last night, and I was explaining the biggest problem with POTS; which is blood pressure regulation. (That's why I feel so awful all of the time.) BP regulation is something that everyone else's body does automatically...mine doesn't; which is why I have 'autonomic dysfunction.' On any given day, my heart rate ranges from 50bpm to 160+bpm. I'll have BPs fluctuating from the 70/30s to the 110/60s.

So many things affect it: movement, humidity, temperature, exercise, heat, etc. The list goes on and on. I almost pass out walking out into humidity from the a/c. Taking a hot shower is a marathon. Just standing up has me seeing stars, let alone any other movement. Drinking a very hot drink, or something iced can set my POTS off so I do neither.

You know that air pressure sound when you drive with the windows cracked in your car? That sets off my POTS too. I'm sure that's probably what happened to be today. I went out and the movements and the driving set off a chain reaction.

So far it's been impossible to regulate. I take in a lot of salt, take meds for salt retention, take vasoconstrictors, and am going to get compression stockings. I have specified diets and do what I can, when I can.

I'm so incredibly tired of having to work so hard just to be normal.
Not to mention that it's still not working, and I still feel awful.
I know why they say this feels like congestive heart failure. (I haven't had it, but I can understand the comparison.) I can also understand why all research shows that POTS patients use three times as much energy as a normal person, just to do 'normal' things.

I hate that I'm back to square one with trying to find doctors and answers.
I wish I was understood more because I don't like being so alone and I feel so guilty talking to other people about it. (A friend pointed out that if I showed how I really felt more often, this might be better...but I'm not so sure that's the case with my family.)

I'm sure I would feel a little bit better if I wasn't so afraid to sleep...but the nightmares are so terrifying and realistic, I just can't. I'm scared.

I'm trying so hard to fight the urge to just pack it in entirely.

By the way, thank you to the kind people who have been re-routed here from you-know-who's blog. (I don't know if she'd want me to share, so I won't.) I appreciate you taking the time to stop in as a favor to her. She's lucky to have friends like you.

Falling apart at the seams.

Horrible depression over my situation is setting in today.
No job, no money, no career, no plans.
I have no idea what I'm going to do or where my life is going.

It seems that my mom's words have cut deeper than I thought they had.
In a way, she's right; my life is on hold.
On the other hand she's incredibly wrong.
I didn't put my life on hold; POTS did.
I don't live on government assistance and I don't want to live on government assistance.

I want to get better. I'm trying to get better.
I want a job, a career, a family...my own self-sufficient life.
I want to do and enjoy the things that everyone else does without even realizing it.
Things like: going to the store, going to the movies, taking a walk outside, going to the beach, etc.
What she fails to see is that I have a chronic illness that affects every single part of my life.
I can't just suck it up and deal with it. I physically can't.
In order for me to move on with my life, to be able to do any of those things, I have to get better.

Right now, it's hard to think about the future and make future plans when I'm not feeling any better.
Why torture myself with dreams that may not come true?
***
Fear has set in too.
Fear over my heart giving out.
Fear over not waking up.
(It doesn't help that I'm having nightmares about that.)
Fear of ending up alone because my health is too much of a burden.
Fear that I will die young; something I've worried about longer than I've even known that I was/am ill.
I'm having a hard time keeping it together.

All the cool kids dream of chronic illness.

Last night my mom and I got into it.
Again.

She thinks that I've been doing absolutely nothing with my time. She says that I should have figured out other schools to go to and have a job by now; that I'm doing nothing with my life.

I find this attitude to be incredibly hurtful.

As if it's not enough to deal with almost-constantly feeling awful, I have to put up with this too?

***

This is something that seems to be a common theme among chronic illness patients.

Parents, family members, coworkers, and friends don't understand what having a chronic illness is truly like because they've never had one.
Just because a chronically ill person looks fine, doesn't mean that they are fine.

POTS is considered to be an invisible illness for a reason.
I look fine, healthy even.
But the reality is that I'm not. As this blog can attest to.
I mean, really, would I spend thousands of dollars on doctors and specialists for absolutely nothing? For no reason?
Would anyone want to go through this for fun?!?!
According to her, yes.
I'm doing this just to "live off the government" and do nothing with my life.

Apparently, all the cool kids dream of chronic illness.
thanks J for the great sarcastic line :)

The Opposite of Helpful.

This entry is about my totally-ridiculous-and-complete-bullsh*t visit to the cardiologist yesterday.

First, a play-by-play:

To start off with, I arrived early for my appointment. I also made sure to bring everything that I needed: the logs he had asked for, and As usual, the cardiologist was behind schedule. I waited for what seemed like an eternity, and finally (45 minutes after my appointment time) I was called back. Which, of course, led to more waiting.

When the cardiologist finally got around to getting to my appointment, it was...aggravating.

He walked in, and asked me the generic "how have you been doing?" (I said "alright.")
He asked, "Have you had any more episodes since the last time we spoke?"
I replied, "yes, I have. I had one just the other night." (Saturday)
Him: "Tell me about it, what happened?"

So I start to tell him what happened. (Sitting on the couch, start getting light headed and my feet, lips and teeth went numb. My heart rate was relatively low but it felt like it was out of control...)

Halfway through my explanation, he cut me off and asked me if I had tried the Midodrine. Which, I told him yes I had, but I was taking the dosage that my POTS specialist recommended instead of the one he had.

He demanded to know who this person was. He said he needs to see those records because he's my GP and has a right to them.
(First off, he is NOT my GP. Secondly, he already knew I was seeing the POTS specialist, I had already told him this so his attitude was completely unwarranted.)

He walked out of my appointment and didn't come back.

Seriously...he didn't come back. He said nothing else to me, walked out of the door and didn't come back.

So, I walked out of the room and out to the reception area; where the woman proceeded to get my bill together. I asked her "am I going to finish my appointment?" She goes "what do you mean?" (In a very nice way, she's a lovely woman...she wasn't being snarky.)

I said, "He hasn't said anything to me. He didn't give me the results from my testing. He didn't go over the logs I brought in -or- listen to to my concerns or questions. He didn't even let me finish answering his question; he just walked out of my appointment and didn't come back."

*insert look of total confusion on the look of the receptionist.*

The receptionist then disappears to find out where he went. When she comes back, she says he told her I would have to come back some other time; and he had moved on to the next patient.

WHAT?!?!

Yep. He had moved on to the next patient, after walking out of my appointment and not doing anything...and I PAID for this treatment. What the f--k.

Needless to say, I wasn't taking that and I asked to speak to the office manager. I asked her about my test results, and the cardiologist is the only person who is medically allowed to release the results to me. She said she would be getting in his face to find out what was going on and would call me with my results so I wouldn't have to be there any longer- I'd already been there over two hours already.
(I believed her, she's gotten in his face before.)

*****

How can someone behave so unbelievably unprofessional? He didn't address a single one of my concerns. He didn't go over any of the work I'd brought in. He didn't even tell me what the results of my tests were. He didn't even let me finish a sentence.

The only thing that I can think of that happened is that he got upset I was seeing the POTS specialist- which is ridiculous because he already knew that. It seems that his ego is so fragile, that he got offended and turned it into a pissing contest. Instead of being a grown up (POTS specialist and cardiologist are supposed to be working TOGETHER), he threw a hissy fit and walked out refusing to treat me.

What a child.

And this is the person I have taking care of my heart?

*****

Coming to a decision...

I did a lot of thinking after I got home. A LOT of thinking.
A lot of mentally abusing the cardiologist for treating me so poorly.
A lot of "what do I do now?" thinking.

This is what I decided to do:

First, find out about the results of my tests.
Second, get all of my labwork and testing files sent to my actual GP.
Third, terminate my relationship with this doctor.
Fourth, find a new doctor.

Today the office manager called me...

My test results are clean. He didn't look at any of the things I left yesterday. (I left copies of the picture of my purple hand, and my BP logs because the office manager said she would get him to look at them...he was an ass and didn't look at them either.)

She said she would get those in front of him tomorrow and call be back about that also. Along with my instructions and recommendations. How he can have any is beyond me; but whatever. Little does she know that I won't be coming back.

Tomorrow I'm going to my regular doctor's office to sign a release form to get the records sent the records from the cardiologist. Then my affiliation with them will be terminated.

*****

Obviously, I'm hurt and upset. I wasted time, energy and money on this person.
Time, money and energy that I don't have.

Looks like it's back to the drawing board for me.
I could just break down and cry.
Sigh.

these last few days...

I haven't been doing well at all; today being the absolute worst.

I'm not up to talking about it just yet, but maybe I'll update later.

When POTS attacks

Last night, I was at my boyfriend's house when I had one of the worst POTS attacks than I've had in a long time.

We were just watching tv when all of the sudden I couldn't breathe. I was gasping for air, my fingers and teeth and lips and feet were numb. I wasn't panicking, my heart was flipping out. My pulse was actually only around 80, but the arrhythmia was so bad it felt like it was racing out of control.

My boyfriend wanted to call an ambulance.

I said no purely because there isn't a thing they could do for me. I've had attacks before and there's nothing I can do but wait them out. The cardiologist says my heart's in fine shape so I'm not going to have a heart attack, so why call the paramedics?

Eventually it quieted, and now I'm okay. (though exhausted)

He was scared...hell, I was scared.
It's not doing much to calm my fears of having my heart give out, or dying young.

Saturday at Bat

Amount of sleep: six hours or so, I'll take it.

Diet:
- Breakfast: pastry, 3 cups water
- Lunch: I honestly can't remember....
- Dinner: steak and roasted potatoes, lime fizz, 1 cup water
- Snack 1: rice cakes, 1.5 cups dr. pepper
- Snack 2:

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: chest pain, arrhythmia, exhaustion, nausea

Misc:
white spots are back :(

TDIF

Overall, today was an okay day.
I got out of the house to cruise around my hometown for a scavenger hunt...
(God I love my hometown.)
Which was a nice change of pace.

Emotionally, not a great day...but I'm not in the mood to talk about it.
Hopefully, it's just the change in the weather (big storm moving in).

Amount of sleep: four or five hours

Diet:
- Breakfast: pastry, 3 cups water
- Lunch: pasta salad with olives and italian dressing
- Dinner: grilled hamburger and roasted potatoes
- Snack 1:
- Snack 2:

Exercise/activities:
- cleaned the entire house
- searched for photos for the scavenger hunt!

P.O.T.S. symptoms experienced:
so far: headache, chills, sweats, cold extremities, anxiety, nausea, arrhythmia

Misc:
white spots are back :(

Pictures from our garden:

Sticky Thursday

Ugh today is miserable out; not exceedingly hot but muggy as all get out.
I took the dogs out for a walk this morning, and by the time I got home my heart was pounding and I couldn't breathe. (From heat intolerance I have no doubt.)
So, at the moment, I'm hiding out in the a/c...which is fine because I've been sick all morning.

Amount of sleep: nowhere near enough. Maybe five hours? Horrible nightmares though. Waking up screaming and crying does not make for a good night's sleep :(

BP a.m.:
standing: 75/41 HR: 129
laying down: 78/55 HR 51 arrhythmia

Diet:
- Breakfast: Ensure
- Snack 1: pretzels, 4 cups water
- Snack 2: rice cakes, 2 cups dr. pepper, 3 cups water
Just horrible today. I really need to get past the stress and work harder at this.

Exercise/activities:
- took each of the dogs for a walk

P.O.T.S. symptoms experienced:
so far: nausea, cold extremities, stomach upset (lower), heart pounding, migraine, sweats, visual disturbances, extreme heat intolerance, fatigue, insomnia, mood swings, difficulty breathing.

Misc: I'm having that pain in my side again from my surgery. :(

More Misc:
Here are a smattering of my recent BPs. I was dumb and didn't put them in my blog as soon as I recorded them, and I didn't write down the dates I took them...so I'm not entirely sure what days they go with. (Like I said: dumb.) But they are important to know so here they are:

84/64 HR: 82 arrhythmia
81/57 HR: 52
84/50 HR: 105
100/68 HR: 57
94/91 HR: 61

104/61 HR: 76 arrhythmia
84/41 HR: 57 arr.
93/53 HR: 73
72/48 HR: 123
83/58 HR: 142

82/34 HR: 49
80/34 HR:47
99/67 HR: 76
77/40 HR:51

When they're all listed like that, it gives a pretty clear picture of what my body goes through every day. Heart rates ranging from 47 to three times that? Holy crap. No wonder I feel so awful.

Hot and Sultry Wednesday

Horrible diet day.
What I need is to go to the store and buy some actual food to have in the house
(we have none)
But I don't have the funds to do that; so I'll have to make do with what we have for now.

Amount of sleep: five hours max. Punctuated by thunderstorms and bad dreams.

BP morning:
(will update later...I really am taking them)

Diet:
- Breakfast: 6 rice cakes. I love them. 2.5 cups water
- Lunch: three slices bread, 1 cup dr. pepper
- Dinner: pasta salad, 1 cup dr. pepper, 3 cups water
- Snack 1: handful pretzels
- Snack 2: handful m&ms

Exercise/activities:
-

BP p.m.:
standing: 83/57 HR: 97
laying down: 86/35 HR:54
symptom: 77/34 HR: 57

P.O.T.S. symptoms experienced:
so far: nausea, cold extremities, chills, sweats, heart pounding, walking difficulties, memory loss, brain fog

Misc:

It's Tuesday; whatever.

Want to do: head back to bed and never get up

Will do: I'll find something
***
Okay, so I did end up doing something with my day. I tried to vacuum out the pool. It's hard work, and it was very hot today (tomorrow even hotter) so I didn't get to finish it, but I tried.

Later on, I went to boyfriend's to get some time and space away from the stress at home.
It was well worth it.

Amount of sleep: five hours maybe?

BP morning:

Diet:
- Breakfast: 2 cups fruit preserves, 2 cups water
- Lunch: pasta salad 1.5 cups ginger ale
- Dinner: hamburger and pasta, 1.5 cups homemade lime fizz! (heaven)
- Snack 1: handful m&ms, 2.5 cups water
- Snack 2:

Exercise/activities:
- vacuumed some of the pool

P.O.T.S. symptoms experienced:
so far: nausea, cold extremities, chills, sweats, light headed, heart pounding

Misc:
-

This is getting really old.

Once again, I'm in a bad place.

To the best of my observations, the new meds aren't helping me any.
I take it, and an hour later my head starts tingling away; which leads to chills and cold sweats.
The tingling compounds with a migraine that follows shortly after.
The migraine then leads to an upset stomach...
On top of this, my POTS symptoms aren't alleviated any (to my knowledge).

They say to give any new medication a couple of months to wear work their way into your system.
Which, I can understand...but what happens if they aren't helping?
It's only been a week, and I can't expect miracles...but I shouldn't be expecting to feel weird and gross and sweaty and shivery. I shouldn't need pants and a sweater when it's 90 degrees out.
(yes, I wore pants and a freakin sweater today.)

What if this doesn't work and I've wasted 2-3 months of time, energy and money on something that doesn't provide me with anything positive?

In the meantime, tomorrow my credit card payment goes through.
After that, I will have $11 to my name.
Not even enough to cover next month's prescriptions; whether they're helping or not.

Eleven. Dollars.
That's it.

Sad Monday

Sad news today...Great Grammy died this morning.
***

Amount of sleep: about six hours

BP morning:
laying: 94/71 HR: 61
standing: 84/50 HR: 105 arrhythmia

Diet:
- Breakfast: nutella on bread, 2.5 cups water
- Lunch: chicken nuggets and fries from McD's (I forgot how gross their nuggets are...won't be having those again)
- Dinner: pasta salad
- Snack 1:
- Snack 2:

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: nausea, exhaustion, cold extremities, chills, sweats, light headed, heart pounding

Misc:
-

Up-in-the-air Sunday

A nice day here...was sick a bit, but overall it was decent.
Still waiting on some news.
Now, however, I'm beyond exhausted.

Amount of sleep: about six hours

BP morning:
laying: 84/47 HR: 59
standing: 76/61 HR: 108

Diet:
- Breakfast: nutella on bread, 2.5 cups water
- Lunch: n/a sick again out of nowhere :(
- Dinner: hamburger (and roll), baked potato (cheese, sour cream, bacon bits), applesauce, browie, 1.5 cups dr. pepper
- Snack 1: half an iced mocha
- Snack 2:

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: nausea, exhaustion, headache/migraine, cold extremities, chills, sweats, arrhythmia, heart pounding

BP evening:
laying: 81/57 HR: 52
standing: 84/64 HR: 82 arrhythmia

Misc:
-

Saturday

All that's left of our garden :(

Amount of sleep: few hours

Diet:
- Breakfast: nutella on bread, 2.5 cups water
- Lunch: n/a too sick.
- Dinner: salmon, pasta, lime fizz.
- Snack 1: half an iced mocha (what's making me sick now)
- Snack 2: 2 cups water

Exercise/activities:
- nothing really. so exhausted from overdoing it yesterday

P.O.T.S. symptoms experienced:
so far: nausea, exhaustion, headache/migraine, cold extremities, chills, sweats

Misc:
-

It's My Birthday Damnit!

You guessed it, today's my birthday. I'm turning the big 2-4.
The weather is perfect (65-70, sunny, not a cloud in the sky, light breeze...heaven)
I've gone on two walks already today and it's not even noon!
Still not feeling great,and I shouldn't push myself; but screw it, I'm going to.

Amount of sleep: sadly, not much :(

Diet:
- Breakfast: brownie, 2.5 cups water
- Lunch: potato pancakes, cheese, sour cream, bacon bits, 1 cup dr. pepper, 1 cup water
- Dinner: (going to be) pepperjack stuffed burgers, salt potatoes, dr. pepper
- Snack 1:
- Snack 2:

Exercise/activities:
- took both dogs out for a walk
- short walk through the nature trail
- watering the garden (which is hard work, believe me)

P.O.T.S. symptoms experienced:
so far: heart pounding, light headed, difficulty breathing, weakness, exhaustion, migraine again

Misc:
-

Some pictures:

Crash Thursday

Physically feeling just awful today.
I can't keep my eyes open, my heart physically hurts and is beating funny, and I can barely stand.
I haven't been able to get off the couch.
:(

Amount of sleep: not much

Diet:
- Breakfast: fruit puree, 1 cup water
- Lunch: mac and cheese, 2 cups water
- Dinner: potato pancakes with sour cream, shredded cheese, bacon bits, 2 cups water
- Snack 1: small brownie
- Snack 2:

90/60 HR:71 arrhythmia
81/54 HR:69 Arr.
78/51 HR: 70 Arr.

Exercise/activities:
- house cleaning (thanks to a late-day burst of energy)

P.O.T.S. symptoms experienced:
so far: shakes, head tingle, difficulty breathing, weakness, exhaustion, migraine again

Misc:
-

Breezy Wednesday

It is a beautiful (though windy) day in my neighborhood. Sunny, 75 and breezy.
In my opinion, near perfect.
(little less wind and it would be perfect)

Physically, I'm feeling pretty awful today because of the huge weather change...
But, I can breathe outdoors; and tonight we're going to grill beef kabobs on our brand new grill, and maybe make homemade lime fizz (my favorite!) so I will take the physical suckiness to have a much more beautiful, and enjoyable, day than yesterday.
***

Amount of sleep: Maybe six hours?
HORRIBLE nightmares. I sure hope that's not a side effect.

BPs a.m.:
Laying down: 83/48 59
77/46 81
Standing: 87/63 94

Diet:
- Breakfast: two swiss cake rolls, 2.5 cups water. (it's the only thing I wanted!)
- Lunch: garlic bread, 3 cups water
- Dinner: beef kabob with onions and peppers, oven roasted potatoes, 1 cup ginger ale.
no lime fizz- I felt way too sick for that unfortunately. :(
- Snack 1:
- Snack 2:

Exercise/activities:
- had the best of intentions to walk, but instead I cleaned the backyard and the pool

P.O.T.S. symptoms experienced:
so far: shakes, head tingle, difficulty breathing, weakness, exhaustion, migraine so bad my head's going to explode :(

Misc:
-