So Mad

[mvdula]

OK, warning: this is a very angry rant - I am at the end with this illness. Can't take it anymore. Why do I have these problems at 35yo with 4 kids and 1 on the way???? OK, I made the mistake of not getting a cart at the store. Then decided to buy large chickens because theye were buy one-get one free. Got basket and started to carry it (with at least 15# in it) to the front of the store. Result: Chest Pain. I mean, COME ON. I can't even do that!!!!!??????? It was not what I'd call severe - but obviously real and caused by what I was doing - and I don't think it was muscular either. I can't take it - it sounds awful, but sometimes I'd just rather drop dead than keep dealing with this crap. Am I supposed to just sit around at home in a chair all day???????????????????????????? Sorry again - I really want an explanation for this garbage - but I'll take anything - theories, commiseration, whatever

[Mary P]

I can see that you've had a really bad day and have every reason to vent. This is a good place to do just that because we all understand. I'll bet you feel better already now that you got that off your chest. Be kind and gentle with yourself and I hope you get a good sleep. A good sleep for me is the best tonic in the world.

Sending hugs your way. Mary PO

[Guest tearose]

Hugs to you.

I hope the chest pain has passed now.

I am sorry to hear that you had a rough time. Yes, we do have to make adjustments and know when we can manage on our own or have to cut back or go to the doctor.

Be careful not to overdo things.

[sue1234]

I totally understand your frustration!! I am one of those that do sit at home everyday. Because of that, I will spend my free time trying to figure this out. I know there isn't a doctor out there that will devote the time/effort I WILL to figure this out. Please join in some of our posts that discuss theories. The more brain cells that can come together on this, the more headway we will make!

[Noreen]

{{{Maggie}}}

I hope you've recovered from your shopping trip. You now know to always grab a cart. Leaning on the cart while shopping can help stave off symptoms.

Cut yourself some slack. After all you are busy growing a human at the same time you are doing everything else.

wishing you Sweet dreams and restful slumber,

noreen

[mvdula]

Thanks for all the kind words. It was actually very short-lived. I just want an explanation! I have had countless EKGs, a stress echo a few years ago, an implanted loop recorder, etc....all is normal, all they ever catch are PVCs and a relatively high heart rate. I have trouble carrying heavy things or working with my arms too much - esp overhead. I basically solve this by avoiding those things - MUCH easier said than done when you are a mom with a large family. The kids help a lot, and my husband does too. I just don't get what I AM supposed to do when I am so limited - it makes me feel lazy....and scared, like I am basically just trying to avoid symptoms....and even death by avoiding activities. I can't do exercise, clean the floors, etc, or I will end up with a POTS spell feeling very weak, revved up, high hr, and on the verge of collapse (tho usu no chest pain) for 1+ hrs. I just wish I knew what is CAUSING the chest pain!

[lissy]

Thanks for all the kind words. It was actually very short-lived. I just want an explanation! I have had countless EKGs, a stress echo a few years ago, an implanted loop recorder, etc....all is normal, all they ever catch are PVCs and a relatively high heart rate. I have trouble carrying heavy things or working with my arms too much - esp overhead. I basically solve this by avoiding those things - MUCH easier said than done when you are a mom with a large family. The kids help a lot, and my husband does too. I just don't get what I AM supposed to do when I am so limited - it makes me feel lazy....and scared, like I am basically just trying to avoid symptoms....and even death by avoiding activities. I can't do exercise, clean the floors, etc, or I will end up with a POTS spell feeling very weak, revved up, high hr, and on the verge of collapse (tho usu no chest pain) for 1+ hrs. I just wish I knew what is CAUSING the chest pain!

Sorry about everything your dealing with, I also have those chest pains have had may echos and nuclear stress tests and was never told why. Everything is structurally sound I'm told, I think its hormonal because its worse with the changes of cycle and you said your pregnant right maybe that has something to do with it...? I was told before the dx of dysautonomia that it was MVP causing the pain I do have some leaky valves and its just part of it so I guess its just a guess when nothing shows up on the tests.

Hope these negative feelings your having pass quickly

Lissy

[pat57]

If memory serves me, the chest pain is becaUSE THE Tachycardia causes (obviously) quick beats and heart can't fill that fast.

Picture filling a container with water. Squeeze it and the bottle pulls in liquid as it reforms to its

original shape. You know it can only fill so fast. It remains partial imploded if you squeeze and release to fast.

[firewatcher]

This might seem like a simple question, but HOW were you carrying the weight?

If I had 15 pounds in a grocery basket, it would be with both hands held in front, up near my chest, at least that would be my first impulse. Two things come to mind: if that was your position, your pecs might be weak, the other is that it would cause a lot of pressure by those muscles on the chest cavity almost like the valsalva which limits blood flow to the heart to begin with---plus you are pregnant. Add in upright tachycardia and your poor heart was starving for O2. I try to carry my groceries down on either side with my arms slightly bent and back to open the chest and engage the bicep so that I don't strain my shoulder tendons. I can carry quite a bit of weight that way without discomfort, but a laundry basket is a pain and it is much lighter. I always had a hard time holding the kids in front of me with both arms and ended up with that classic Mommy-one-hip carry (not great for post pregnant hips!)

Just the pregnancy alone is taking a LOT of your energy, so cut yourself some slack and give your little helpers something to carry instead of you (except the eggs!)

[Tanzanite]

Get yourself checked for Chostochondritis (sp?). Press on your sternum, does it hurt? It's mostly likely to be Chosotochondritis.

[Noreen]

That is GREAT information to keep in mind.

Thanks for thinking things out for us.

This might seem like a simple question, but HOW were you carrying the weight?

If I had 15 pounds in a grocery basket, it would be with both hands held in front, up near my chest, at least that would be my first impulse. Two things come to mind: if that was your position, your pecs might be weak, the other is that it would cause a lot of pressure by those muscles on the chest cavity almost like the valsalva which limits blood flow to the heart to begin ... I try to carry my groceries down on either side with my arms slightly bent and back to open the chest and engage the bicep so that I don't strain my shoulder tendons. I can carry quite a bit of weight that way without discomfort, but a laundry basket is a pain and it is much lighter. I always had a hard time holding the kids in front of me with both arms and ended up with that classic Mommy-one-hip carry (not great for post pregnant hips!)

[mvdula]

I wish it were chostocondritis - my chest pain has never matched those symptoms. I was actually carrying the basket over my forearm - had my arm bent to hold the basket in the inside of my elbow - does that make sense? Also, I kept switching arms bc it was so heavy. I don't think I could have carried it in my hand with my arm extended - hard for my hand to hold - and seems the weight is so far away that it pulls more and seems heavier - does that make sense? I guess that's why I carried it the way I did. Any thoughts with that info?

[OBXGIRL]

OK, warning: this is a very angry rant - I am at the end with this illness. Can't take it anymore. Why do I have these problems at 35yo with 4 kids and 1 on the way???? OK, I made the mistake of not getting a cart at the store. Then decided to buy large chickens because theye were buy one-get one free. Got basket and started to carry it (with at least 15# in it) to the front of the store. Result: Chest Pain. I mean, COME ON. I can't even do that!!!!!??????? It was not what I'd call severe - but obviously real and caused by what I was doing - and I don't think it was muscular either. I can't take it - it sounds awful, but sometimes I'd just rather drop dead than keep dealing with this crap. Am I supposed to just sit around at home in a chair all day???????????????????????????? Sorry again - I really want an explanation for this garbage - but I'll take anything - theories, commiseration, whatever

Hi Maggie,

I read your post, and it made me giggle. Not in a bad way, but of course this has happened to me too!

It isn't really the problem of the heart, or that you didn't push the cart, or drive in that awful cart, that beeps when you go in reverse, REALLY, wide load beeping, give me a break, what is with the beeping.

This is really about being a very young woman in the prime of her life growing her family, wanting to be NORMAL, and trying to be as much as possible. Then in a everyday moment, "that everyone else does", we are reminded that OOPS, not you lady. I myself am very stubborn. My family always says drive the cart, don't go shopping, we will do it. But, we want to have our lives back. Be in control. And when we aren't, WE GET MAD!!!

So rant and rave, and know that you are not alone. Someone like me is listening, and feeling the same. But remember, LAUGH, out loud if you have to. For the day brings us many great moments too. Just look at your beautiful babies, and all the silly things they do.

Have a awesome day Maggie,

Thank you for reminding me, that I am not alone.

Kathleen

[firewatcher]

I wish it were chostocondritis - my chest pain has never matched those symptoms. I was actually carrying the basket over my forearm - had my arm bent to hold the basket in the inside of my elbow - does that make sense? Also, I kept switching arms bc it was so heavy. I don't think I could have carried it in my hand with my arm extended - hard for my hand to hold - and seems the weight is so far away that it pulls more and seems heavier - does that make sense? I guess that's why I carried it the way I did. Any thoughts with that info?

Yeah, that is kind of the position I was describing: You were holding it up at or above your waist, but attempting to carry it out slightly away from your body? You were really engaging your abdominals to keep yourself up straight and increasing the pressure on your ribs (which are already full of baby.) Can you remember if your were holding your breath during the effort? Holding over your elbow was also compressing your arteries, much like a BP cuff would so it may have been fluctuations of the blood stopping in your forearm and then filling again. I think there was probably a physiological reason for your chest pain, instead of it being a new symptom. I'd be curious if you could repeat the whole thing and get the pain again.

I have an awful time with attempting to raise my arms above my head; I'll get dizzy and HUGE BP spikes. I can't carry things at waist level either, it is just hard! I carry down with my shoulders back and biceps engaged (that way it won't hurt my shoulder or neck.) Good luck on your next trip!

[firewatcher]

Here's a thought: make one of your kids the "cart manager" when you go to the store. It is their job to get a cart for you, every time you go to the store...even if it is a quick trip! That way, they learn to help you and you won't forget. My 11 year old LOVES this job! (He's been doing this since his eyes were even with the cart handle.) He even gets to push the cart, while my 8 year old loads the stuff I give him into it. The older one will bag at the register as well (future job training!)

TIP: beware of crazy driver syndrome though, it took a little while for him to become good at avoiding other carts and people!

[mvdula]

Thanks, firewatcher. I do that - my 11-yr old is in charge of the cart, and loading the car, unloading at the house, etc. - I actually have trouble pushing ithe cart if it is not a smooth cart or is too full. He also checks out for me at self check-out, and pays. My 10yo and 8yo bag the groceries. So, I do have a lot of help usually. This trip with the chest pain incident - I had only my 8 and 4 yr olds with me and thought I would only buy a couple small things. Will not make that mistake again - the 8 yr old ended up getting me a cart and pushing it with the offending basket in it - even though he could barely see!

[MomtoGiuliana]

I get chest pain with exertion if I am dehydrated. Since you are in the first trimester your blood volume is supposed to be building every day. This is hard for/on POTS patients. Make sure you are getting enough fluids. Take care of yourself. I know, it is hard to accept limitations and unknowns!

[comfortzone]

I'm sorry you had such a kick in the teeth day with symptoms...... I had a rant myself today at the pain management doctors office... Kinda went like this:

Me:

I have turned over every freaking rock there is, I have exercised, I have eaten right, I have lost weight, I have taken my meds, I have a part time job, I have been worked up by 3 major hitters in the medical world - and tons of the minor hitters, I have traveled time zones, had every lab and scan and film and test -- and the bottom line is WWWWWWWWHhhhhhhhhhhaaaaaaaaT??????????????????????

WHAT the heck is there left to do!!!!!!!!???????????? I WANT TO FEEEEEEEEEEEL BETTTERRRR now!

HIM:

He steps back draws in an exagerrated breath and says, 'NO! REALLY? Now that's unusual!!' 'REALLY? YOU WANT TO FEEL BETTER? REALLY? NOW?'

Anyway just the way he said it made me bust out laughing ... maybe it was the stress but I really started cracking up -- and that's just exactly why he said it that way I guess...... To make me laugh and lighten up and give me a broader yet perspective....& validate me etc...

He's a great man and physician who knows what I've been through seeking answers for the last couple of years -- he's done more good for me than many doctors because he listens.... he cares..... he doesn't get all weird on you because you hurt or cry.... Just a decent man in my regard who has been there....

But back to you --- sorry about your frustration. Sometimes things do just mount up and it's healthy to give it a good scream............ Hang in there -- better days ahead.... If we were neighbors I'd shop for you in a heartbeat..... I don't get chest pains & it must be very hard - I'd love to help.

[HopeSprings]

Hi Maggie,

I read your post, and it made me giggle. Not in a bad way, but of course this has happened to me too!

It isn't really the problem of the heart, or that you didn't push the cart, or drive in that awful cart, that beeps when you go in reverse, REALLY, wide load beeping, give me a break, what is with the beeping.

This is really about being a very young woman in the prime of her life growing her family, wanting to be NORMAL, and trying to be as much as possible. Then in a everyday moment, "that everyone else does", we are reminded that OOPS, not you lady. I myself am very stubborn. My family always says drive the cart, don't go shopping, we will do it. But, we want to have our lives back. Be in control. And when we aren't, WE GET MAD!!!

So rant and rave, and know that you are not alone. Someone like me is listening, and feeling the same. But remember, LAUGH, out loud if you have to. For the day brings us many great moments too. Just look at your beautiful babies, and all the silly things they do.

Have a awesome day Maggie,

Thank you for reminding me, that I am not alone.

Kathleen

Oh my God Kathleen, yes, yes a thousand times YES. You are exactly right, you said it so well, you desrcibed exactly how I feel and I'll bet how so many of us feel. Your response gave me goosebumps and made me laugh and made me want to cry... I want to be in control again, to have my life back. This disease has robbed me of most of my twenties and now at almost 38, has taken my 30's too. Thank god for my two little children -- I love them so much and they have given me so much joy, but I want to enjoy them MORE and be able to give them more. I so hope a cure is possible.