POTS Awareness Week

POTS Awareness week starts today! Some good friends of mine helped to create this image for me (and fellow POTSies!)

One heck of a doctor's visit

Boyfriend and I made the trek to meet the new specialist. Outside of having a horrible POTS day, it was actually a fairly pleasant 45 minute drive thanks to light traffic and the way my boyfriend speeds (lol).

As soon as we got there, they took us immediately and I was talking to a doctor within minutes. The office definitely gets some serious points with me for being on time! The first doctor I saw was actually shadowing the specialist I was there to see. He took care of all the preliminary stuff: BPs, a thorough stethoscope exam, family history, going over all of my symptoms and previous testing.

Then, the doctor came in and went over everything. He also did an examination of his own. He then sent me to have an arterial ultrasound and a TBI right while I was there.

To make a long story short, here were his opinions/thoughts/comments:

- I don’t have EDS. Apparently people who have EDS tend to have a lot of the same physical features (eyes, nose, chins, etc) almost like someone who has, say, Down Syndrome. I don’t have those. Plus, if I had vascular EDS, I would have had ruptures and several aneurysms by now which all of my tests have shown that I haven’t. (They would have shown if they’d happened in the past a well.) That wasn’t entirely shocking as I read last night that people with vascular EDS have serious problems if they reach their 20s, and often die in their 40s. Needless to say, I’m relieved that I don’t have it. (I wish there was a definitive test that they could do. I’d feel better with a definite no.)

- I don’t have Raynauds phenomenon. The color that my hand/foot turns isn’t consistent with Raynauds. The fact that the ‘episodes’ aren’t related to cold is another point. With RP, the color changes are entirely related to temperature. While it’s still possible, in theory, that it’s RP, he’s treated a lot of people with it and is fairly certain it’s not that.

- The good news is that all the super serious things have been ruled out. No FMD, no EDS, etc. (Though I'm debating a second opinion on the EDS just to be safe)

- In the end, he’s just as mystified as everyone else. He wants me to have two tests. One is a blood panel for lupus (which has been in my family) and other rare rheumatological disorders. He doesn’t think it will come up positive for anything, but after about a million rounds so far this year, bloodwork is a cake walk for me and he wants to be sure. The other is some sort of rheumatology test to check the blood flow down into my hands. From what he said, it seemed like an ABI but for my arms and fingers. I’ll get my resting results, and then I’ll do a few arm exercises and take those results as well. It’s non-invasive so it’s not a big deal…just annoying that I have to drive all the way back there for it. I also have to keep a diary of my ‘episodes’ and what I’m doing during them. (One more thing to keep track of. Ugh!)

I shad my bloodwork earlier this week and they’re going to call me about scheduling my test. I scheduled my follow up for everything to be on December 30th. While I know it’s optimistic (and possibly delusional), I’m hoping that, no matter what the diagnosis is, I’ll be done with all of this before the new year. (Obviously, I’ll still be treating my POTS and that’s not included in that goal lol)

Tomorrow

I'm going to meet with the specialist who will, hopefully, be able to tell me if I have EDS or not. While I'm sure I probably don't have it, I'll be glad to hear for sure seeing as the kind that would be most likely is the vascular one; which does not have very good stats. With any luck, he'll be able to figure out why my hand keeps turning purple, and why my arm and leg ache constantly! Especially, now that I know it's not a cardiac, circulatory, or neurological issue.

I'm also glad that my MRI came back as normal, meaning my vision loss was just an aural migraine! I'm very relieved. I have my fingers crossed that those won't become a frequent thing as that scared the bejeezus out of me!

***

As far as an update on POTS goes, I started my higher dosage of Midodrine and my aches seemed to get worse. I started to get nasty headaches as well. I've dropped back to my original dose for a day or so and my headache (which has been around for five days!) has significantly decreased. I'm going to talk to my specialist about it at my next appointment because I saw some improvements fatigue-wise with the higher dose, and some drawbacks. I'd be curious to see what she has to say.

A visit to the specialist

I had a visit with my specialist yesterday. We discussed a lot of things, including recent testing that I've had done and how I've been feeling.

When I told her that I felt I was having a lot of setbacks lately, her opinion was that it's probably from doing a job that is not exactly a good choice for someone with POTS. I'm constantly on my feet for hours at a time and I have a lot of bending and standing to do as well- none of which adds up to a great job for someone with dysautonomia. Right now, the job I have is my only option. It took me a very long time to get it, and I'm lucky to have it. So, even if it would be best for my health to leave it, I'm not going to do that. After all, how am I supposed to afford my medications if I'm not working at all? I'm not fortunate (or unfortunate, depending on your point of view) enough to receive any kind of aid, so not working isn't an option.

She is impressed, for lack of better word, that I am working as much as I am. Working 8-12 hours a week is a big deal for someone with my condition. While she's happy with that, I obviously am not. I can't work enough to support myself living with my family with minimal expenses and it feels like I will never be able to work enough to save money and move out. While my family doesn't exactly appreciate my illness for what it is, or it's severity, I'm lucky that I can still live at home. There's no way I could move out or support myself. It's...heartbreaking to be so reliant on someone else. It's even more upsetting because I'm in my mid twenties. I should be out exploring the world, living on my own, working, going to school, etc...and instead I'm penniless and living at home.

Yes, I've made some strides. I can run errands. I can work a four hour shift. (Although, to be honest, I tolerate it very poorly.) While these are great things, it's far from enough. I'm coming to terms with the fact that my life will probably never be what it used to be before POTS, and my health may never be what I want it to be...but there has to be more than this. I can't live a life like this.

***

My doctor and I discussed how I'm handling having a chronic, disabling illness, and she asked me if I felt I was depressed. I've always been very wary of that word. Depression seems like something that is so overdiagnosed and that most doctors just want to throw pills at. That is not what I want, or want to have associated with me. My last general doctor (not specialist) thought all of my symptoms were just anxiety and depression and wanted me to take pills.

(They were wrong, I had POTS.)

I think, considering everything that I'm dealing with on a daily basis, I'm doing fairly well. At least, I thought so until she starting asking me about my sleeping habits, how often I cry or get overwhelmed, and what my support system is like. Answering her questions, I almost broke down right in the office.

I was told that it's normal to feel depressed about all of this. After all, POTS completely changed the course of my life and I struggle against it constantly. Some days are tolerable, but some are completely unbearable.

It's difficult to be exhausted from the simplest of tasks and I'm frustrated by my lack of progress. It's hard to watch the people I was friends with, or my family members, go on with their lives while it feels like I'm trapped no matter how hard I try. It's extremely hard having to explain my condition over and over, or worse- complete lack of empathy or even an attempt at empathy from people I come into contact with. Hearing all of the "you don't look sick" and "what do you do all day?" comments.

On top that, there's the lack of awareness and understanding from most medical professionals. (I can't even count the number of doctor' I've had to inform about POTS...shouldn't it be the other way around?)

Who wouldn't be unhappy?

My boyfriend was there and he feels it's a bit more serious that I let on, and he said so. Based on what she asked me, I sounded like I was depressed, or becoming depressed, from fighting POTS. I cry pretty frequently, I rarely sleep, and I'm having a hard time dealing with the fairly constant criticism (for lack of better word) that I have to put up with. I'm also lonely from the isolation.

I may try to find someone to talk to who specializes in chronic illness. (I tried before, but the person my specialist recommended wasn't accepting patients and couldn't recommend anyone else who deals with chronic illness.)

***

After that, we decided to up my midrodrine to 7.5mg three times a day (on top of my florinef) because I'm tolerating it well and there's a lot of play room for dosages before we would try switching to something else.

I'm also going to be having a brain MRI. Last week I lost a fairly large portion of my vision temporarily and she thinks it was an migraine with aura. She's not overly concerned but it's something I've never had before and it would be better to be safe and make sure that is what it was. Plus, over the last few months I've noticed an almost constant aching and stiffness on the right side of my body; and trouble focusing with my right eye. She gave me an in-office neurological test and wants me to have the scan just to be sure. (and it would give us a 'base' point for comparison in case I would start developing anything else.) I was nervous when I couldn't do one of the tests though (walking backwards), and she asked me to repeat holding my fingers up together twice.

She also suggested I seek out a rheumatologist for my recurrent purple hand.

(I never posted the result of that, so to make a VERY long story short: I had a lot of cardio testing and there's a mild stenosis in my arteries but not severe enough to be causing my hand to change colors.)

I'm also to ask about Ehler's Danlos Syndrome, which is common with people who have POTS. I'm hoping the person my cardio/vascular specialist recommended is familiar with EDS and would be able to diagnose it if I have it. He's almost two hours away, so it would be good to know if he's capable of diagnosing EDS before I would even make an appointment.

***

Overall, I guess it was okay. She's pleased with my progress- though I'm obviously not. What can I say- I'm impatient. I am not thrilled about more testing, and another possible condition to deal with but I know that checking for them is doing due diligence. At least I have a doctor now who wants to be thorough, so I can't complain too much. Better to be taken seriously than blown off like I have been in the past.

All I can do is what I've been doing: getting up every morning and trying as best I can.

(Almost) back to square one

Over the past few weeks I've been having more and more setbacks. Considering that I was finally starting to push forward, I'm pretty upset over it.

Being upset, naturally, I want to talk to somebody about it and it's times like these when it's glaringly obvious how much POTS has taken from me- in terms of relationships. I feel incredibly alone; very isolated. When I make a stray comment or something to my family, through facebook or whatever, they ignore it completely. As far as friends go? Forget it. Of course, I know people are busy and have lives, I don't expect anyone to be sitting around waiting for me, but when I'm reaching out in some form and receive no response, I'm definitely not going to approach someone and force the to talk about something they have no interest in. (I have a few really great online friends, but I'm talking people I know in 'real life'.)

I'm very lucky that my boyfriend is supportive. He's always willing to listen and be leaned on...but POTS is a huge imposition and has been for years. I feel guilty talking about it. I try my best not to complain but he knows when I'm not feeling well. (We've been together for years, he can just sense it at this point.)

I guess my only hope right at this point is to just keep pushing to get better, then be able to get out more. Until then, I'm on my own. I'll be talking to my specialist on Thursday to see what to try next.

Awareness Week

After searching the internet over and over, I've found that while there's an "Invisible Illness Awareness Week, there is no POTS Awareness week.

So, I'm instituting one and here it is:

Postural Orthostatic Tachycardia Awareness Week:

December 11th-18th!

downturn

My downslide continues. I'm becoming more and more disheartened by it. I wish I knew whether it was the weather or the meds failing. Last night, I was too sick to take my meds when I normally do and when I was able to take them (two hours later) I needed help standing to get and take them. I wanted to scream, or cry, in frustration.

Today, I'm all the way back to where I was. Nauseous, black spots, trembles, arrhythmia, migraine/headache, aches, chest pains, tightness in my chest, unable to breathe, inability to stand (at least on he first try or two), blood pooling in my legs, etc...

I'm really struggling.

Struggling lately.

For a while, I was doing fairly well. I was walking a few times a week, I was running errands pretty frequently and I started a part time job. Yes, I was only working eight-ish hours a week, but those eight hours were a huge step for me. It was still a long way from what I want my life to be like, and hope it will be like someday, but I was definitely starting to feel useful again.

Lately, things just seem to have taken a large step backward. I only worked for four hours this week, and I'm so overrun with symptoms that I can barely stand. I'm constantly exhausted and run down. My vision is wonky, my arrhythmia is back, and I feel like I'm constantly trembling from the exertion of just standing or walking around. Yesterday, I started to see spots again just standing in the shower- something that hasn't happened in quite a while. I don't know if it's the weather fluctuations or something else, but it's upsetting.

Needless to say, I'm very discouraged. I'm so tired of struggling on a day-to-day basis. Some days are better than others, but it's still a constant battle of wills between what I want to do and what my body will allow me to do; sometimes coming to the point of crying from frustration. I'm trying very hard to keep my head up and plow ahead, but some days it just seems impossible.

Working through it

I can't think of a better title for a post! Work has been increasingly difficult. I was hoping that I would build up some sort of tolerance, but with POTS it doesn't seem that that's possible. I knew it probably wouldn't work that way, but I had hoped!

Some days are better than others. I've worked out a system of waking up over an hour before I need to get up just to take my meds; then I grab another hour of sleep. They take about an hour to kick in, so when I get up it's definitely easier.

The weather is definitely becoming an issue though. We've had awful weather for the last few days, and my symptoms are crazy. My heart's skipping beats, I have migraines, my stomach is upset and my hands and feet keep going numb. My compression stockings help, but they're still not great. I've tried upping my midodrine dosage but it doesn't seem to help all that much.

Rough few days.

I've been having a rough couple of days. First, my POTS has been out of control due to all of the weather fluctuations. Second, work hasn't been going well. I'm struggling a lot and am not keeping up the pace that they want. I said that I would try harder, but I've been driving myself to sickness for the last two days and I physically can't go any faster. Today, I pushed so hard that I broke out into a sweat. I felt so sick that, after work, I went home and bawled.

Maybe I should move.

This last week has been very POTSy. It's been raining on and off all week, and non-stop for the last 3.5 days. I woke up this morning, and I could barely get out of bed. When I stood up, my heart went nuts. I'm shaking and my head is foggy. My hands and feet are constantly numb. (Yes, it's cold outside but in my house it's around 70 degrees- definitely not cold.)

I've wondered before if I should be living somewhere else with more consistent weather; seeing as Fall and Spring are the hardest. (Too many temperature/weather fluctuations.) I'm starting to think it might be what's best for me.

Today I almost quit.

I got up, took my meds, and felt so awful by the time I rolled into work an hour later that I debated just turning around and going home. I felt way too guilty to do that (because I was already there), so I decided to stick it out.

Halfway through my shift, I started to have a full-out POTS attack. Dizzy, nauseous, sweating, shaking, aches, arrhythmia, head pounding, short of breath, heart pounding, etc... I almost started bawling right in the middle of the store.

I took my break, tried to relax and put my feet up; and forced myself to finish the day. It's the worst I've felt since I started work.

I'm home now, and I took a shower- so I'm taking the rest of the day to rest up for tomorrow; when I work again.

If I didn't need the money so badly, I would have quit today. It was that bad. I was worried I would need an ambulance.

Pushing too hard.

Last night, my work called to see if I could work again this morning. I (foolishly) said yes. I knew I was feeling awful from my 8-hour week, so adding four more hours would be rough.

Halfway through work this morning, I started to feel sick and my arrhythmia was starting up and getting progressively worse as the day went on. Yes, it was only a four hour shift, but you couldn't convince my body that four hours is "no big deal".

I could feel the blood draining out of my face, my arms were tingling and my hands kept going numb. I broke out into a sweat and my head started getting fuzzy, while my body felt 'light headed'. (It started to tingle all over like it had fallen asleep.)

I had to send out birthday presents for my dad in the mail, and hit the bank (hurray, I got paid! My first paycheck.) so I ran those two errands, then I went home, took a shower and crashed.

My boss today asked if I could work again tomorrow, I'm glad I said that I couldn't. I feel like hell.

Follow up

Yesterday, I had a follow up with my POTS specialist. She was very impressed with the fact that I now have a job; though she kept telling me that the type of job I have isn't exactly the best fit for someone with POTS because I'm on my feet for hours at a time. While I know that, I don't think she exactly understood that it was literally my only option, and I needed the money because POTS has brought me to my last $5. (She's a very nice person, but she's foreign and there's a definite language barrier between us, so I don't think when I tried to explain all of that to her that she really understood just what I was saying. She just kept saying to get a different type of job...if I could do that I wouldn't be working where I am!)

She's going to give me a little more freedom with my medications this time. I was taking midodrine 5mg three times daily, and now she's giving me some leeway to take an extra half or full tablet when I feel I need it. During the last few months of trying the midodrine, it has helped, but I can feel it wearing off. I'll do well for two hours or so and then I feel myself wearing down. So now, when that happens, I can try taking half of a tablet . Another example: If I'm working and I need the extra help, I can take two tablets beforehand. I'm still on a really low dose and I can be taking up to eight full tablets a day. (I wouldn't do that lol but it's good to know that I have some leeway with it.)

While I was there, I also asked if she could recommend a counselor who specializes in chronic illness. It killed me to do it, but the emotional side of dealing with this is overwhelming; especially because no one in my life understands what it's really like. It's hard to hear from schools, teachers, potential employers that you're 'damaged goods'. (Yes, someone actually told me that no one wants to buy a broken item.) Some of my family is trying to work with it, but some refuse to believe it's as bad as it is. They tell me to just get over it and deal with it. Anytime I meet someone and they ask "what do you do" and "are you in school?"...they give me a look of disappointment and distaste because I'm not in school, and I'm not working full time because I'm ill. They see that as 'an excuse'. (Yes, I've been told that too.) It's hard to deal with when I'm already thinking all of those things about myself...it's even harder to hear it from other people; strangers, friends, family and boyfriend's family.

Anyways, she did give me someone's number, and maybe if I can work enough to afford it I'll give it a try.

Beyond that, she's recommending finding another type of job where it's a desk job or something like that. We're going to see how this medication change helps- hopefully it will. She's also wanting me to start exercising- which I've started to do but I should try to do more.

My boyfriend was a bit unhappy with me because he thinks I never tell her how bad it really still is; but that's hard for me. I went through 3 years of doctors blowing me off and telling me to stop complaining; so it's hard to believe I can trust this person and tell her everything that's wrong. I'll do better next time.

Overall, I think it was a pretty positive appointment. Hey, at least she's impressed with me right?

I have a job!

Last weekend, I was hired at a local business.
(I say that, but really they're a national business with a local branch)

Anyways, I started work right away this week. I worked two four-hour shifts. So far, I like it.
My POTS, however, doesn't seem to like it. I have a really hard time getting moving in the morning despite the motivation to do so. I did some research and it seems like this is normal for a POTS patient.

I've been wearing my compression stockings to my shifts and they seem to do an okay job at helping me. I know they're helping somewhat because I do a lot of crouching/standing stocking shelves and I don't get as dizzy or disoriented as I used to but when I'm working the customer service end of things, I have a really hard time still with the pooling of blood in my feet. Yesterday, just standing there, I could feel all of the blood draining down into my legs.

The toughest parts are still the insomnia and the nausea. I eat and I get nauseous; I don't eat and I still get nauseous. When I put the compression stockings on, I'm nauseous and when I take them off...you guessed it! Nauseous.

Last night, and today, I'm achy, shaky and exhausted. My brain's very foggy too and my vision's wonky. I'm going to see the POTS specialist this week, so I'll be telling her all of this and seeing what she has to say.

***

It's hard. Much harder than I thought it would be- and it's only eight hours a week. I can't imagine doing any more just yet and that upsets me. I'm in my mid-twenties and I have no savings anymore thanks to POTS, and I'm completely worn out just working eight hours. There was a lot more that I wanted to do, and have done, in my life than this. Right now, I'm hoping that I can at least make enough money to pay my bills and pay for my meds every month...which looks like it's going to be tight. I guess we'll see. For now, I'm just grateful that someone is willing to take me on, POTS and all.

Update

The interview turned out to be more-or-less a waste. The job was very labor intensive and when I told them about POTS, the interviewer expressed a lot of doubts over my ability to handle it. (I have quite a few doubts about it too.) They said they'll let me know in a couple of weeks, but I have a feeling it wasn't a good fit for me or for the company.

The only upsetting part for me, was hearing the doubts from the employer because of POTS. While I appreciate that they're (partially) thinking about my health and safety, it still was awful to hear it.

A big step forward.

Tomorrow, I have an interview. I'm incredibly nervous. I can't even describe how nervous. My biggest concern is obviously POTS. I don't want to have a POTS attack in the middle of the interview-which has happened before; when I interviewed for a graduate school program.) I also worry about how this prospective employer will take hearing about POTS. I don't feel it's right to keep something that affects my daily life and my physical abilities a secret. It's unfair to them, and it's certainly unfair to me as I'll need adjustments made for me. Possibly a stool if I'm working a cash register, or more frequent breaks if I'm on the floor. Either way, they deserve to know and I don't feel it's right to hide it until after I would get hired (if I would get hired.) I want the job but I'm not going to lie to get it.

So, hopefully they will be willing to give me (and my POTS) a chance.
Fingers crossed.

Awful Day

Today was a horrible POTS day.
I spent almost the entire day in bed.

I got up early to send a package to a friend, and when I was at the post office I couldn't feel my legs or my arm. I started to get dizzy and my heart started pounding. My arrhythmia went crazy. I wasn't panicking, but my chest and head started to hurt.

I went home, and I could barely move. I could barely lift my arms or stand. I couldn't breathe.
I almost passed out in the bathroom.

I thought maybe I had forgotten my meds, but when I double checked I definitely had taken them.

I crawled into bed, and cried myself to sleep. Much later, I was able to eat something and move back downstairs but I couldn't do anything else. Still too tired and almost completely debilitated.

Hopefully, tomorrow will bring a better day.

Fatigue and Being Stubborn

Today started innocently enough; I got up, took the dogs for a walk and managed to go out to a local craft store and the grocery store with my sister.
Halfway through grocery shopping, I just could not do anymore.
I was so tired, and everything ached so badly that all I wanted to do was head home.
I went home, ate my lunch, and sat down to read.

Even now, I'm so tired I can barely move. Lifting my arms is a struggle and my whole body feels tingly like it fell "asleep" and is now on pins and needles.
It's taking all of my will power not to jump into bed and stay there.
(I refuse to give in.)

Amount of sleep: 6 ish hours

Diet:
- Breakfast: nutella on bread, 3 cups water
- Lunch: bologna sandwich, handful potato chips, nectarine, 2.5 cups water
- Dinner: homemade fresh veggie pizza, 3.5 cups water
- Snack 1: 3 cups Dr. Pepper (over the course of the whole day)
- Snack 2:

Exercise/activities:
- two walks (one with each dog)

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, aches, nausea, headache, light headed, trembles, pounding heart, anxiety

Misc:

Fresh Air

Lovely day out- 60s and cool. Perfect for having the windows open and getting fresh air.
I was able to take both dogs for a walk and, after a rest, I went job hunting for a very short while.
***
I've been wearing the compression stockings for a few days and I'm not really noticing any different in how I feel with them. The only things I've noticed are that my hands aren't ice cold (good thing) and I get a horrible migraine (bad thing). I'll be asking my specialist about them at my next appointment.

Amount of sleep: 6 ish hours

Diet:
- Breakfast: nutella on bread, 3 cups water
- Lunch: hamburger on white bread, apple slices, hot mocha
- Dinner: stir fry with chicken, corn, red pepper, orange pepper, yellow pepper, onions and rice, 2.5 cups water
- Snack 1: 2 cups water
- Snack 2:

Exercise/activities:
- 1 mile walk (half mile with each dog)
- errands

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, aches, nausea, upset stomach (lower), headache/migraine, chills, dizziness, light headed, trembles, pounding heart.

Misc:
-

falling off the wagon

I've totally dropped off the whole 'recording my diet and symptoms' thing. A lot has been going on with my health aside from POTS, so my stress has been high and my diet's been (relatively) poor. I know that I have to get back to it, and will. Tomorrow starts a new week, so I'll press on then.

Staycation...

I tried on my compression stockings today. I didn't notice any difference in how I felt symptom-wise, other than having a headache.

I did push them to the limit by going on a trip to see Niagara Falls and the Buffalo History Museum. Overall, it was a 4.5 hour trip and we walked over 2.5 miles!
While it was nice to be out for a little while, the compression stockings didn't really help my symptoms. I guess time will tell if they're any good at all.

Here's a picture of the Horseshoe Falls

Amount of sleep: 5 ish hours

Diet:
- Breakfast: nutella on bread, 3 cups water
- Lunch: n/a...felt too sick
- Dinner: homemade white pizza, 3.5 cups water
- Snack 1: half a candy bar, 2 cups water
- Snack 2:

Exercise/activities:
- over 2.5 miles of walking around Niagara Falls

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

Misc:
-

(Slightly) Less Compression

I went and returned my last pair of compression stockings, and they offered to give me the pressure just below the one I had. They're going to call the doctor and see if that's acceptable. For now they exchanged them for me anyways because the other ones were 100% unwearable. (These ones are still insanely tight but I can at least get them on.)

If it is acceptable, then I'll have the order a tan pair because they only had black and those stand out terribly when you're wearing shorts. Talk about inviting gawkers!

Amount of sleep: barely any

Diet:
- Breakfast: nutella on bread, 3 cups water
- Lunch: large baked potato, sour cream, butter, shredded cheese, 'bacon' bits. 1 cup dr. pepper
- Dinner: chicken, pasta, onions and peppers, 2.5 cups water, 1 cup lime fizz
- Snack 1: half a candy bar
- Snack 2:

Exercise/activities:
- walking the nature trail
- errands

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, arrhythmia, pounding heart, aches, nausea, headache/migraine, visual disturbances, shakes/trembles,

Misc:
-

Sunday

Amount of sleep: barely any

Diet:
- Breakfast: nutella on bread, 3 cups water
- Dinner: homemade, fresh veggie pizza 4 cups water
- Snack 1: handful M&Ms, 3 cups water
- Snack 2: pretzels, 1 cup dr. pepper

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, aches, nausea, headache/migraine, visual disturbances, shakes/trembles, heat intolerance, chest pain, difficulty breathing

Misc:
- week 2 vitamin D supplement.

tired

Absolutely exhausted today because I stayed up until the wee hours of the morning so I could catch the meteor shower. While I know it's going to aggravate my symptoms, it was well worth it. Besides, there are big storms moving in and that's already wreaking a bit of havoc with my POTS, so it's no extra harm done!

Amount of sleep: about 5 hours. Stayed up late to watch the meteor shower

Diet:
- Breakfast: large bowl rice krispies with lactaid, 2.5 cups water
- Lunch: potato pancakes with sour cream, cheddar cheese and 'bacon', 2.5 cups water
- Dinner: pasta salad, 4 cups water
- Snack 1: handful M&Ms
- Snack 2:

Exercise/activities:
- bathing both dogs

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

Misc:

Stressed.

“Out of clutter, find simplicity.”

- Albert Einstein -

Amount of sleep: about 4 hours. horrible nightmares.

Diet:
- Breakfast: 3 pieces cinnamon swirl bread, 2.5 cups water
- Lunch: homemade pasta salad, 1 cup dr. pepper
- Dinner: steak with baked potato, 1 cup dr. pepper, 2 cups water
- Snack 1: handful M&Ms, 4 cups water
- Snack 2:

Exercise/activities:
- up early and walked around the nature trail
- laundry and cleaning

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

Misc:
purpleish hand

Interesting Info.

I was doing some research this week on a topic I was curious about: POTS+ birth control pills.

I went off of the pill well over a year ago because it was making the symptoms of my as-yet-undiagnosed condition much worse. My chest hurt, my flutters were worse, etc. Recently, I've been debating going back on it for the regulatory benefits (I find that the addition of Midodrine to my system has really thrown off my cycle- something I have to ask my doctor about) as well as the obvious protection benefits.

So, out of curiosity, I took to the internet to see what the internet has to say about POTS and birth control pills.

What I found was a bit surprising to me. On a dysautomnia message board - the topic was POTS/birth control- I found out that quite a number of birth control pills contain diuretics. The benefit of this for a 'normal' woman is that it should help with the bloating that comes before/with your period. They can also help to lower your blood pressure.

For a POTS patient, having a diuretic is the exact OPPOSITE of what is needed. Diuretics aid your body in ridding itself of water; a POTS patient needs to retain water and salt to keep their blood pressure and blood volume up.

So, it would seem (though I'll ask just to be sure) that birth control pills/patches are out of the question. I'm not sure about other methods, but I would assume they would be safe as they're not introducing diuretics into the body. This also means that period-related aids that contain diuretics are not recommended; such as Midol or Pamprin. (I don't use them, but it's good to know and share I think.)

Very interesting.

Gorgeous out

Still feeling pretty awful...but the nice part is that it's beautiful outside.
We have the windows open and it's nice to have the fresh air in the house.

Amount of sleep: about 6 hours. Horrible upsetting nightmares.

Diet:
- Breakfast: piece of breakfast strata, 2.5 cups water
- Lunch: bologna, cheese and crackers lunchable with capri sun. 2.5 cups water.
- Dinner: pasta salad, 2 cups dr. pepper
- Snack 1: handful m&ms, 2.5 cups water
- Snack 2:

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: headache, cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, chest pain, depression

Misc:

Yuck.

I've been up since 7am because my POTS has been so bad. It's been a long time since I've woken up in the middle of the night gasping for air, but that's what happened this morning.
My chest hurts, my heart's pounding and I can't breathe.
I'm not pleased.

Amount of sleep: about 6 hours with weird dreams.

Diet:
- Breakfast: slice of bread with nutella, 2.5 cups water
- Lunch: mini potato pancakes with shredded cheese, sour cream and 'facon', half an apple, 1 cup iced mocha
- Dinner: n/a (was feeling too sick)
- Snack 1: few slices cinnamon bread, 2.5 cups water
- Snack 2: 2.5 cups water

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: headache, cold extremities, exhaustion, dizziness, heat intolerance, arrhythmia, pounding heart, chest pain, depression, nausea

Misc:
-

How do these things work?

So. I tried my compression stockings on today.
Correction: I tried to get my compression stockings on today.
I couldn't do it. They are so tight that I couldn't even get my foot into foot part, and I couldn't get the rest of it on past my calf. Then, I couldn't get the damn things off either...so I sat on my bed and yelled out of frustration.
Finally, I ripped the horrible things off and cursed at them.
I'll make another attempt later or tomorrow.

Amount of sleep: about 6 hours

Diet:
- Breakfast: slice of bread with nutella, 1.5 cups water
- Lunch: salami sandwich wrap, 1 cup dr. pepper, 1 cup water
- Dinner: steak with roasted potatoes, 2 cups water
- Snack 1: fruit puree, 1.5 cup tea
- Snack 2:

Exercise/activities:
- not much; very rough POTS day; probably due to the weather

P.O.T.S. symptoms experienced: (May be skewed from the testing obviously)
so far: headache, nausea, weakness, exhaustion, dizziness, heat intolerance, arrhythmia, pounding heart

Misc:
- super humid, pouring rain

Pushing through

Pushed myself hard today.
I went and picked up my compression stockings- which are not what I wanted. It turns out that the strength I need only comes in one form: opaque. They're the Sophia Petrillo stockings I was dreading. I'll be trying them tomorrow.

I also took my sister out to run errands today. By the end, I was exhausted but it was productive.
***
On the negative side, I'm having to ration out my meds right now because I can't afford any more. It's incredibly upsetting.

Amount of sleep: about 6 hours

Diet:
- Breakfast: slice of bread with nutella, 3 cups water
- Lunch: large bowl mac and cheese, 2.5 cups water, 2 cups dr. pepper
- Dinner: McDonalds hamburger and handful fries, 2.5 cups water. (I still can't believe the recommend high calorie foods like this for me...but I still eat them rarely.)
- Snack 1:
- Snack 2:

Exercise/activities:
- testing

P.O.T.S. symptoms experienced: (May be skewed from the testing obviously)
so far: headache, nausea, hand/feet numbness, shakes, weakness, exhaustion, dizziness, heat intolerance

Misc:
- Week #1 of my Vitamin D regimen. So far, so good.

Testing: Day 2

Second, and hopefully last, day of testing.
Thankfully, it was better today than yesterday's was!
So glad it's over with.

Amount of sleep: about 5 hours

Diet:
- Breakfast: two small homemade donuts, 2 cups water
- Lunch: leftover salmon and chips, 2 cups ginger ale
- Snack 1: 6 bite-sized almond biscotti, 2.5 cup water
- Snack 2:

Exercise/activities:
- testing

P.O.T.S. symptoms experienced: (May be skewed from the testing obviously)
so far: headache, nausea, hand/feet numbness, purple hand, shakes, weakness, vision problems, exhaustion

Misc:
-

Testing Day 1

I had testing this morning. It was long, sucky and threw my POTS completely out of whack so now I feel downright awful!

Amount of sleep: about 5 hours

Diet:
- Brunch: banana cocoa muffin, 4 cups water
- Dinner: leftover salmon and chips, 2 cups water
- Snack 1: two small homemade donuts, 1 cup water
- Snack 2: handful m&ms.

Exercise/activities:
- testing

P.O.T.S. symptoms experienced: (May be skewed from the testing obviously)
so far: headache, nausea, hand/feet numbness, purple hand, shakes, weakness, vision problems, dizziness, spots in front of my eyes, exhaustion

Misc:
-

Nervous Wednesday

Getting nervous about some testing I'm having tomorrow so my eating habits are a bit wonky. (Tomorrow they'll be even worse.) Looking forward to being done!
I also threw out my back yesterday so I'm on light duty. Thankfully today it's a bit better, but I'm taking it easy just in case.

Amount of sleep: about 7 hours. Had a rough night of sleeping so when my alarm went off I rolled over and went back to bed.

Diet:
- Breakfast: two banana cocoa muffin, 2.5 cups water
- Lunch: bacon, cheddar and scallion scones, 2 cups water
- Dinner: herby salmon, rice
- Snack 1: 1 cup dr. pepper
- Snack 2:

Exercise/activities:
- none

P.O.T.S. symptoms experienced:
so far: headache, nausea, hand/feet numbness, heat intolerance, shakes, weakness, vision problems, dizziness, spots in front of my eyes :(

Misc:
- raining all day; very muggy

Compressed Tuesday

Got up early this morning and went to a medical supply place that can get my compression stockings! They're going to call me once they place the order. I'm looking forward to seeing how I feel with them and if they help me!

Amount of sleep: 5-6 hours

Diet:
- Breakfast: one banana cocoa muffin, 2.5 cups water
- Lunch: mac and cheese, 1.5 cups dr. pepper
- Dinner: fresh veggie pizza, 3 cups water
- Snack 1: handful M&Ms, 2 cups water
- Snack 2: homemade doughnuts, 2 cups water

Exercise/activities:
- errands

P.O.T.S. symptoms experienced:
so far: headache, hand/feet numbness, heat intolerance, shakes, weakness

Misc:
-

Hello August

So far, not a great POTS day.
I went out and ran errands this morning. First, it was okay. Then about an hour into it, the heat started to get to me and my stomach started to get upset. I was also really lightheaded and my feet started to get a lot of blood pooling in them. They started to get heavy and lose feeling and walking was iffy, so I decided to go home. Driving home was tough and I wonder if it's safe...
Either way, I went home, had lunch (something super salty) and put my legs up which is helping.

I've also called a few places and finally managed to find somewhere that will fit me for my compression stockings. I'm hoping to feel up to making it there tomorrow.

Amount of sleep: about six hours

Diet:
- Breakfast: two banana cocoa muffins, 2.5 cups water
- Lunch: potato pancakes with shredded cheese, sour cream and facon bits. 1.5 cups dr. pepper
- Dinner: veggie stir fry with pasta (yellow and orange peppers, red onion, cauliflower and green beans), 2.5 cups water
- Snack 1: handful M&Ms.
- Snack 2:

Exercise/activities:
- errands

P.O.T.S. symptoms experienced:
so far: headache, hand/feet numbness, arrhythmia, heart pounding, heat intolerance, shakes, weakness

Misc:
- sharp pains in my side

Rocky start

The weather's been a bit odd so far today; flip-flopping between sunny and storming and I'm feeling it. I can barely breathe and am constantly lightheaded/ light-limbed
(which is what I'm calling the tingles in my arms/legs from now on.)
Hopefully, the rest of the day will even out nicely and my symptoms will ease off!

Amount of sleep: about five hours, nightmares

Diet:
- Breakfast: bowl of rice krispies, 1 cup lactaid, 1 cup water, 1 fruit puree
- Lunch: bologna sandwich (so bad, but so delicious), potato chip snack bag, 1.5 cups dr. pepper
- Dinner: chicken, potatoes, half a cob of corn, 3 cups water
- Snack 1:
- Snack 2:

Exercise/activities:
- tons of baking.

P.O.T.S. symptoms experienced:
so far: difficulty breathing, arrhythmia, heart pounding, heat intolerance, shakes, weakness

Misc:
-

Summery Saturday.

Ran a couple of errands today, and I'm pleased with that.
The rest of the day was spent in true summer fashion: a few minutes in the pool and grilling food.We tried a new recipe using a pepper picked from my own garden, but unfortunately the recipe wasn't very good.
(Moreso, wasn't our taste; too sweet.)

Amount of sleep: about six hours

Diet:
- Breakfast: bowl of rice krispies, 1 cup lactaid, 2.5 cups water
- Lunch: grilled italian sausage, 3 cups water
- Dinner: steak with potato salad- both homemade with a new recipe, not very good unfortunately...but we were bound to come across a bad recipe. 2 cups water
- Snack 1: starbucks mocha
- Snack 2:

Exercise/activities:
- errands

P.O.T.S. symptoms experienced:
so far: difficulty breathing, arrhythmia, cold extremities, aches, tingling/numbness, headache, heart pounding, heat intolerance

Misc:
-

Rainy (Hurray!) Friday

It's finally raining! Our first real rain in almost a month and it's wonderful; we've desperately needed it. Yeah, the rain exacerbates my symptoms, but it's going to be so nice to see the grass turn green again!

Amount of sleep: about six hours

Diet:
- Breakfast: 3 slices cinnamon swirl bread, 1 fruit puree, 2 cups water
- Lunch: fresh veggie pizza, 3 cups water
- Dinner: p.f. changs pepper steak/ mongolian beef with white rice. 2.5 cups water
- Snack 1: handful m&ms, 2.5 cups water
- Snack 2: strawberries with sour cream and brown sugar, 1.5 cups water

Exercise/activities:
- errands

P.O.T.S. symptoms experienced:
so far: difficulty breathing, arrhythmia, cold extremities, aches, tingling/numbness, headache, heart pounding

Misc:
- purple hand is back

Productive Morning

Was up and out early this morning and I'm so glad that (so far at least) my stomach seems to be feeling better for the first time in over a week. Went on a nature walk and did the grocery shopping all before 10 am! I also managed to get the laundry done and the house cleaned.
Now, I'm drained but it feels good to have been productive.

Amount of sleep: about six hours

Diet:
- Breakfast: 2 eggo waffles, 1 hawaiian delight fruit puree, 2 cups water
- Lunch: fresh veggie pizza, 2.5 cups water
- Dinner: mac and cheese with a chicken drumstick, 4 cups water
- Snack 1: handful m&ms
- Snack 2:

Exercise/activities:
- got up early and took a walk in the park
- large grocery shop
- small amount of gardening
- laundry
- house cleaning

P.O.T.S. symptoms experienced:
so far: difficulty breathing, arrhythmia, cold extremities, aches, tingling/numbness

Misc:
-

back to logging...

I'm working my way back into daily logging; and, because I've had the stomach flu for over a week, I'm also working my way back to eating.

Amount of sleep: about seven hours

Diet:
- Breakfast: 2 slices cinnamon bread, half granny smith apple, 1.5 cups water
- Lunch: slice of pepperoni pizza, 2.5 cups lime fizz (kindly made by my sister)
- Dinner: fresh veggie and ranch pizza
- Snack 1:
- Snack 2:

Exercise/activities:
- got up early and took a walk in the park

P.O.T.S. symptoms experienced:
so far: headache, upset stomach (lower), difficulty breathing, arrhythmia, cold extremities, aches

Misc:
-

Getting back on track

I've kind of diverted away from my daily logging, which was really helping me, so I have to get back to it. I also have to get back in the swing of recording my BPs, my diet and my symptoms.

I'll work on it.

ABI- check!

I had my Ankle- Brachial Index (ABI) test this morning.

In the grande scheme of testing that I've had, it wasn't that bad.
You go in, lay on a table in a fancy gown, and they put BP cuffs on your arms and legs. Then they take the pressures in your arms (elbows) and two pressures in your leg; one on the top of the foot, and one on the back.

After that, they took a wave sonogram of the arteries in my legs: groin, behind the knees, and two places in my feet. That part took forever.

Then, there's an 'exercise' portion of the test where I had to walk on a treadmill for five minutes and then hop on the table while the did the arm and leg blood pressures again. Thankfully, that was the end.

The tech thought that everything looked good (meaning no Peripheral Artery Disease) but she can't say 100% for sure because the doctor has to look at it.

***

Not such a bad test really...although, unfortunately, I had a massive POTS attack in the middle (lack of movement, posture changes, temperature changes...from 90 outside to 65 inside, etc). So that part was a nightmare and I couldn't wait to go home.

New Cardiologist

Yesterday I went to see a new cardiologist.

He was really nice, and he made me laugh. We talked about POTS and what I was doing for it, and he said there's nothing else he can suggest. I'm doing everything I can. He'd seen a few patients with it, but none of the ones my age or older had 'grown out' of it, or gotten better; though some had some relief with medications and lifestyle changes. There's no standard form of treatment; it's just trial and error. There isn't enough information out there about it because it's so new, and there aren't many physicians who know about it. In his words: "POTS is a shitty condition." Like I don't know that!

Even though that news wasn't particularly positive or helpful, it did make me feel better that I'm doing everything I can; the problem isn't me or my efforts, it's the condition and lack of medical knowledge on it.

I have to take a vitamin D supplement because my levels are really low (it's a specific 8 week regimen to restore my vitamin D, not just a regular vitamin).

As for the purple hand/foot, I have to have an Ankle-Brachial Index test (ABI) to rule out Peripheral Artery Disease.

There were other things that went on in my appointment; some that were upsetting...but they're not related to POTS so I'm going to keep them in my private blog instead.

Some like it hot.

Some...don't.
Actually, it's more a case of 'the heat hates me'.

The last few days have been pretty rough for me. It's been almost 90 degrees out every day. The outlook for the next week: more 90 degree weather. Thursday it might even be 95! Ugh.

A couple of days ago, Saturday, I did pretty well. I'd never been in heat this high since starting my medications so I decided to test the waters. I stocked up on salty snacks and tons of water. My boyfriend and I went swimming and I spent a couple of hours outside. I thought I was doing really well until I started to crash later.

On the way to my boyfriend's for dinner, I had a full out attack. I couldn't breathe, I couldn't see straight (which was not a good thing while driving!), I was nauseous and my throat stopped working. I couldn't even tell my boyfriend what was wrong. I walked in, sat on his couch and cried because I'm so tired of feeling like this and having these problems. It was only a few hours and most of it was in the shade! The later the day got, the worse I felt. I became very achey and sore with a bad headache and nausea. All I could do was pound the water. It felt like how other people describe a hangover. (I wouldn't know because I've never had more than two drinks in a sitting before in my life, and I don't drink with my medication.)

***

The next day, I was still feeling iffy, so I stayed inside almost the entire day. I decided to swim for literally 30 minutes, and I started to feel very sick again. A half hour! That was the end of my being outdoors time for the day. Thankfully it wasn't as bad for the rest of the day, but it was still bad.

***

The last few days have been really muggy, which is almost worse. I can feel the heaviness in the air. My heart pounds, my headaches are awful and my arrhythmia trips more often. The pooling in my legs is so uncomfortable that I want to scream!

***
*

The part that's really upsetting about all of it to me, is that I was asked to go on vacation with my boyfriend's family this year; and (for once) I was seriously debating going.
They're going to one of my favorite beach locations, and I very much would like to go to the beach. After everything, it would be so nice to go and relax.
But, I just don't think I can go.
If I'm unable to tolerate an hour outside here when it's 90 degrees out, there's no way I can tolerate 100+ degrees for the 8-10 hours a day they spend on the beach.
They are getting rooms with a/c, but to drive 14 hours (which is also very hard on my POTS) to sit in a hotel room 23 hours a day is a huge waste of time and money.
I want to go to the beach, not watch them be at the beach from the hotel.
Maybe next year.
sigh.

Sex POTS

I'm just going to warn everyone now...this entry is going to be a lot of TMI.
I've debated a lot about it and I think it's an important thing to talk about in case any other POTS patient is out there researching what life with it is like.

We're going to venture into an arena that is extremely private for me: sex and having periods as a POTS patient. I'm going to try and keep in detached and clinical, but the fact is it's still going to be about those two things. (I lumped them together to get them out of the way)
So, you've been warned.
I apologize whole-heartedly for making anyone uncomfortable.
Okay, here we go.
*****

POTS presents a daily challenge even on the best of days. So many things affect it: moving, postures, the weather, temperatures, pressures, stress, physical exertion...the list goes on and on. Just getting out of bed, showering or using the bathroom can be tough some days.

Even on the best of days, I have a hard time functioning like a normal person.

Being a woman, part of life is having a special visitor once a month...

For a normal woman, that visitor can range from being mildly irritating to being an all out horror show. Before I had POTS, mine were somewhere inbetween the two extremes. I had migraines and bad cramps, but I could function normally. I started taking birth control and it completely regulated my periods and even helped my migraines and cramps. I won't say having it was a pleasure, but it wasn't intolerable.

Now, however is a completely different story. First of all, I had to stop taking birth control. I found that it exacerbated my symptoms and made me very sick. My periods have become highly irregular. (This last go round was 8 weeks in between.) My legs and feet feel heavy and uncooperative, and the pooling of blood in them is worse that normal. They go numb quickly, so I have to have them elevated almost constantly. My whole body trembles, and I'm very weak. I wear out easily. My nausea is almost constant for the entire duration. I have HORRIBLE blood clots- massive, painful ones. My period also lasts for-what feels like-an eternity. Much longer than it used to anyways.
I know, a lot of these things women have every day...but when your body doesn't regulate itself like everyone else's does, it's much worse.

The pain of cramping is much, much worse than it used to be. Pain is a trigger, so my heart rates spike when the pain is worse, which makes my pressures wonky and makes me feel sick and tachycardic. (It's like being stabbed in the ovary, and then having a small heart attack as a result. Painful, then scary, then painful.)

While it's awful, and borderline unbearable, it happens every few weeks and is more-or-less predictable. I mean, I've had my period since I was 14; I know it's not a pleasure cruise. This is just taking that awfulness and making it more intense. Knowing what's coming though makes it a bit more manageable.

*****

Now sex is a different ball game altogether.

Sex isn't a scheduled event...at least for me it's not. (Maybe for some people it is, but not for me)
Sex is all around a very difficult and, sometimes, uncomfortable thing for someone with POTS.

Normal Scenario: Your 'average' person will be with someone they're interested in, they'll start getting into the things leading up to sex (kissing, etc...whatever it means to you) and that gets their heart rate going. They're body is equipped to handle these changes naturally, so it's smooth sailing for them. They get turned on, they 'do the deed', they (theoretically) enjoy it, then they relax and enjoy post-coital bliss.

For a POTS patient, this isn't the case. The biggest problem with POTS is the fact that the body is dysfunctional at handling blood pressure changes, and compensating for them.

POTS Scenario: You're with someone you're interested in having sex with. Cue foreplay (kissing, etc) *BAM* heart out of whack. BPs out of whack. Arrhythmia sets in. Chest pains...sometimes so bad that it scares you. You feel like you're having a small heart attack and you haven't even done anything yet. This happens every time. Some attacks are worse than others.

Let's assume this is a minor attack. These things happen, but they're tolerable enough that you can get through them. Next your big challenge is: your body is uh...not in the mood. Your heart rate and BP are not well controlled...and to be in the mood, certain areas of your body (male or female) have to have well-controlled, constant, steady blood flow just to make the necessary things happen to be turned on. Have a POTS attack while making out? Chances are even if your mind says 'yes' to sex, your other areas are not prepared or able to. Think 'that must be embarrassing'? Guess what, it is.

It works the other way around too. With POTS, your nerve are affected to so your sensations are also off. So, all those pleasurable zings down your spine when you get kissed just right? Sometimes they happen, sometimes they don't. That feeling of being turned on? Sometimes it happens, and sometimes it doesn't. So your body might be turned on, but you'd never know it.

(Sounding complicated already? Good. It is.)

Okay, let's say it's a perfect scenario...you get turned on, you feel turned on and your POTSyness has been minimal up until this point. Here's the moment of truth: the actual sex part.

POTS is called Postural Orthostatic Tachycardia for a reason. Different postures make it worse.
So...naturally you can see where the problem now lies. Sex requires different positions and postures, even the most basic of them present problems. At best, you lose feelings in hands and feet...at worse, you have a major POTS attack (heart pounding, chest pains, inability to breathe-not the good kind-, limbs going numb, arrhythmia, dizziness, nausea, so on and so forth...) Some positions are better than others. Some are worse. Each person is different.

You have no idea how humiliating it is to be half way through something, and have to stop because your face is ashen, you can't breathe, and your heart is squeezing so painfully you could cry-but I do. You look and feel like you're having a heart attack. You scare the hell out of your partner. Not sexy.

Let's say you've made it through all of that with minor symptoms. (A rare occurrence.)
Now, the afterglow segment. Or, so you'd like to think. I mean, you've made it through all of that so now you should at least be able to relax and enjoy it right?

Unfortunately, no. Right afterward, your BP drops significantly in a normal person. For someone with a normal body, they relax and their BP drops but they've recovered after a minute or two and their bodies can bring them down gently.

For a POTS patient, that significant drop in blood pressure is a big deal. Sometimes, it feels like your heart just fell out of your chest. Coming down afterwards feels like touching down a helicopter in wind shears: jumpy, rough, painful, nauseating. Sometimes there is trembling. Sometimes it's another full out attack.

*****

Now, for any POTS patient out there reading this: know that it is possible to have sex. It's possible to get through these things, and it's possible to deal with them as best you can. The plain, brutal honesty though is that it could be like everything I've outlined. That is what my sex life is.

I'm lucky to have an incredibly understanding partner, but it crushes me often to not be able to have sex as often we'd like to- we're only in our 20s. It's embarrassing to have my body fail again and again and again. It's hard to never feel likes I want sex even though my body says yes because POTS affects my sensation recognition. It's hard to want sex and have my body be unable or unwilling to want it too. It's downright humiliating to have to stop at any point in the process because you're clammy and pale and feel like you're having a heart attack. It's scary and upsetting to see fear on your partners face while you're having an attack. It's hurtful to see them wanting to help you but being unable to.

It makes me insecure, it hurts, it's upsetting to be unlike everyone else my age in this arena too.
It makes me feel like less of a person because I can't share this with the person I love like everyone else can and does naturally, with minimal thought or effort involved.

To the normal people reading this: The next time you have sex (make love, whatever you call it)... remember how lucky you are, and be grateful for the experience and the ability. You're extremely fortunate.

Making contact...

Now that I have the records from my doctor's office, I got up today with full intent to call lawyers. Enough time has already been wasted.

Looking through the phone book, there are two that do product liability cases, which is what I'm told mine would be considered. Both are big firms in this area. I actually live-chatted with one of the firms this morning to see if they even take my kind of case; which they do. Someone from their office is going to call me. I e-mailed the other.

Both offer free consultations, so I'm hoping to be able to take up those offers and get more clarification on whether or not I have a case and can file.

While my POTS specialist said that I'm over the statute of limitations, my mom and I have been doing some research on the vaccine separately. We've also looked at cases associated with the vaccine; and nowhere on their site or in transcripts of other cases does it talk about any specific time period...so I'm keeping my fingers crossed.

It's a long shot. A very long shot. But either way I'm going to get some closure on this issue. I'm just hoping that it'll be in a way that's beneficial to me.

Heaven knows I could really use it. While my dad was very nice in paying back some money he owed me (from a deal we'd made a long time ago that we both forgot about) it's only going to sustain me for maybe two months. I've applied for a job just to have some sort of income, but I'm not sure I can even handle it physically. Some sort of assistance has the potential to change my life.

I know (at least for the time being) I'm not going to get better physically, it's a case of trying to manage my symptoms, but I could be in better shape for taking care of the needs I have that this vaccine forced me to need.

I'm hoping someone gets back to me soon, and that I get some much-needed good news.

*crossing my fingers*

Quit yer Bitchin'

Warning: This entry is about to be unkind.
Today the weather is brutal and my POTS symptoms are out of control. I couldn't even stay up to shower, and when I could I near passed out after taking the stupid shower. Both my hand and my foot on the right side are purple, my hearts pounding out of my chest, and I'm gasping for air. I'm hiding in my house praying the a/c will at least help me breathe. I'm a bit miserable.

Which brings me to this entry.

I am SO sick of people complaining about things that are totally stupid and ridiculous. Whenever I see someone on facebook say "omg I have the worst paper cut ever" I just want to punch them in the face. Or when they complain about something that's entirely their fault ("ugh feeling so sick and hungover") Do you know what happens to me if I have half of a single drink? I'm sicker than a dog and you expect sympathy for downing 20 beers and forcing yourself to be sick? Not going to happen. Or when people complain about being caught doing something illegal and having to actually pay for their mistakes. ("I don't understand why so-and-so doesn't trust me") I'm over here unable to use the bathroom for crying out loud and you're pissing your life away with that and then expect me to feel sorry for you? No, I won't.

Don't get me wrong, I understand people need to vent sometimes, and I can be a complainer (I try to keep it here and away from "real life" and others.) but I'm not complaining about something that's my fault, or some stupid decision that I made, or a PAPER CUT.

I just want to shake these people, knock their heads together and tell them to shut the hell up. They have no appreciation for just how good they really have it and sometimes it makes me so angry I could scream. I wish I could trade lives with them for just one day and help them get some perspective on things.

You have no idea just how lucky you are.
So, for cryin' out loud- shut up, count your blessings and quit your bitchin'.

(Note: This obviously doesn't apply to everyone; just a select few who seem to think that a sniffle should be front page news and that their own stupidity is something they should get sympathy for when some people have REAL problems.)

So now it's tomorrow...

I fully intended to get my records today and start calling some lawyers. I really did.
The records lady had told me that she would have my stuff together for my by the end of last week, so it should be no problem today right? Well, in theory anyways.

I got up early-around 8 (which I realize isn't early for most working people)- and headed out there.
I went in and asked for my records, and the receptionist looked at me like I was crazy. She went through the files cabinet of records waiting to be picked up and couldn't find mine. Ugh.

So, she went to ask the woman in charge of records, and she came out to tell me that she hadn't gotten to them yet. Double ugh. She then told me that she could have them for me by the end of the week-again but as long as I was there I should sign a records release. I wasn't pleased.

It turns out that irritation is a great motivator. I went for a short drive after that, and by the time I'd gotten home and settle in for lunch, she called me to double check what I'd requested (last 5 years of records in full. everything) and then said she should have them for me tomorrow. She would call me either way so I don't waste another trip.

I'm crossing my fingers that I really do get my hands on them tomorrow. It's important to not keep wasting time on this, seeing as the odds are already way against me.
Plus, I'm very curious to see what's in them. Like that pesky "fatal" note in my record that my specialist keeps talking about...

On the plus side, my irritation served me well as I got the whole house cleaned up...quite the task considering the weather's continued effect on my POTS- bad arrhythmia, heat intolerance, migraines, nausea...the whole gamut. (In spite of it, I hope to make it to my sister's outdoor concert tonight...)

Somedays I wonder...

What a supportive family would be like.

Today, I was pretty proud of myself. It's freakin' hot out (85+) and muggy, which for me usually means feeling crappy. I've done my best to battle it as well as I can. I loaded up on salty foods, caffeine (I'll be sick tomorrow from my allergy I'm sure), and lots of water. I stayed in the shade all morning/afternoon- up until now, when I'm in the house of course; because it looks like rain and the air is too heavy to breathe. I even managed to give the dogs an impromptu outdoor bath. (They were very good and now they're clean and fluffy and smell wonderful!)

Anyways, I did what I could. I tried hard, and now I'm shaking and exhausted so I decided to take a break. I had an iced coffee and sat down to try and read a book, when my mom and sister came out to chat.

First, it was benign stuff. Then the conversation turned to my acne and face picking, that my sister also does when she's stressed. She's had a rough few days so she's been doing it a lot and my mom said "well it's okay because she's stressed."

I said, "why is it okay for her to do it when she's stressed? All you do is yell at me whenever I do it."

She goes, "what do you have to be stressed about? You don't have any stress in your life."

um...what?!?!!?

Oh no, no stress at all. Chronic heart problems and a chronic illness are both fun and enjoyable. Endless doctors (most of whom have never even heard of POTS) and their testing is a joy. Little relief from my constant symptoms is gratifying. No funds and no way to work isn't stressful at all; it's a vacation! Support like this from you is a pleasure!
(sarcasm obviously)

I swear she will never get it. Never. I don't understand how she can be this unsupportive and this obtuse. How can you be so blind to your child's condition and how it affects them? How can you honestly think a POTS patient's life is a stress free pleasure cruise.

Her parting words were: "just suck it up like everyone else does."

Yeah.