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Help! I've been so sick!


ethansmom
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I have been doing very well with managing my symptoms since last fall- I had finally adjusted my meds to what seemed like a comfortable place, was living a somewhat normal life, and BOOM the last 2 weeks have been ****. Thank goodness my mother is here visiting, and she's been helping with the baby, driving me places, etc...but she is leaving this afternoon. I am panicking- how am I going to take care of the baby by myself?

I have no doctor right now, and no health insurance- I am waiting for approval through Kaiser, and have an appointment with a new autonomic specialist in April. I was hoping I could hold out until all of this went through, but at this point I don't know what to do. I haven't been doing anything different that I can "blame" for the onset of symptoms again- except I had started taking generic Florinef instead of regular, but at this point I refilled my script for the brand name stuff to see if it helps- no luck yet. I haven't been able to go out in public without feeling like dying, let alone drive a car, or shower without supervision.

I am extremely lightheaded, the fatigue is worse than ever, my heart rate is out of control, I can't breathe normally, and I feel like having a panic attack every second- I have to talk myself down five hundred times a day. I haven't been able to eat well, so my already underweight status is just getting worse. My stomach is upset all the time. I was monitring my BP this morning, and it was all over the map from 100/60 to 140/120. I feel completely out of control...and I am so worried about my mom leaving and having no one to help. I take care of everything around the house, work part time, go to school (I'm graduating this semester), take care of Ethan, and run all the errands....how in the world is this going to work???? I need help!! My boyfriend does not understand the extent of this illness at times, and although he's a wonderful father and provider, he just isn't there emotionally when it comes to POTS- which is why I have this board to come to :)

Anyhow, if you've gotten this far, thanks for listening to my vent!! If anyone has any suggestions, I am open to everything right now. I've been staying hydrated, taking my meds on time, getting 9 hours of sleep at night, trying to stay relaxed, attempting to eat healthy when I can get it down, nothing is working.

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Jessica

How I feel for you and I wish that I lived just around the corner so I could help.

I hope someone has experience with the meds you are taking and has helpful experience. Unfortunately I can't offer any of my own experience there.

Are you still breastfeeding, or did you recently wean Ethan? B/c if you did recently stop, that hormonal flux could be having an affect.

You do push yourself really hard. Even a well person would be challenged by your schedule-- caring for a toddler, working part-time and going to school part-time. So, maybe it is your body's way of asking you to slow down?

I wish I had some great advice for you. Hopefully it is a short-term relapse.

You are in my thoughts today!

Katherine

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That no health insurance stuff is horrible. I never had a complete understanding of how bad it can be for people. I was always under the impression that you could get insurance. That was until I met my wife. Once she had her pacemaker put in and then had to quit her job, BAM, no insurance. And here's a big kicker. There are laws in place (at least in some states) that state that insurance companies need to provide insurance if you were insured at the time you were diagnosed with your now "pre-existing" condition, but there aren't any laws stating that their offering needs to be affordable. Just my two cents, but my wife's health problems have opened my eyes to alot of things.

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Hi Jessica,

Lots of love to you - and if you thouht your post was lengthly, try this one.

firstly don't apologise for venting your anger, we are all here to offer support and be supported from time to time, the help I received when in my POTS hole recently was fantastic, just to know other people are out there who understand is a help in itself. (topic title - I'm having a bad time)

could your mum stay on for a couple of days? If she can't try your hardest not to panic, as this will make it worse.

I have no idea how the health care works in the US, so I can't make any suggestions on this front, I hope someone else will make some suggestions.

Taking generic florinef, should have no affect - the drug should be identical, usually the difference is an additive, or a coating etc.

Try not to be cross with yourself for the things that you cannot do, try and focus on the things you can do - set yourself small challenges that our achievable, so you start thinking more positively. It doesn't matter if you need help today to get in the shower, it doesn't matter if you can't drive - you have achieved logging onto your computer to send an e-mail and read the messages we write back to you - so you have achieved something :) Keep telling yourself it is ok. Today is today, tomorrow is another day.

Try when you feel light headed, to lie down on the floor with your feet elevated, I find this helps - it brings the blood back to your brain and your heart.

My boyfriend is very supportive, but still doesn't quite understand - he is new to this too, although it has been two years, he doesn't understand what it's like in my body, and sometimes he gets cross, not with me, but because he is frustrated and doesn't know how to help me. The handbook on the NDRF is fabulous and has a section for caregivers - try to make him read it, i have found since my partner has read some of the info I have printed out ( I haven't given him the address of the board, this is my place!) he has started to understand my POTS body more, it takes time, but tell him exactly how you feel - I kept my problems a secret for too long.

So here's some tips, from what everyone told me...

1) Be Positive

2) Listen to your body, it knows best

3) Rest - with a big comfortable fluffy pillow (my tip lavender oil!)

4) Drink LOTS

5) Eat when you can (take advantage of being able to tuck into a huge pizza... if you fancy :) )

6) Try not to panic

7) Electrolyte drinks & plenty of salt

8) Panty Hose

9) Set yourself small achievable targets

10) Don't be cross with yourself, and no we are all here to support you, keep trying what usually works, and believe that it will - believe me that it will get better.

feel free to e-mail me, be brave - BIG hugs xx

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Guest tearose

My dear ethansmom,

All the loving words that come before me I echo. Please take care of yourself first! You are no good to Ethan if you don't take of you! I wish I could make you believe that things will look brighter soon...sometimes, I take the thing that bothers me most and try to deal with just that one thing. The only way to go from here is up! Think up!

Sending you healing thoughts and hugs, tearose

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Jessica-

Just letting you know that you are in my prayers as well. Whatever you do, don't do too much. We all know you will pay for it down the road. Please be as good to yourself as you can until things settle down. Wish I could be more help!

-Dan

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Hugs to you my dear. Know that you are among friends who care and who understand. Don't ever fret about venting among your extended POTS-family.

I actually have had dramatic differences in my meds when I've changed brands (including generic to name brands). The inert ingrediants are not regulated and some of us do have different absorbtion abilities. But even so, your body will adjust it may be having an extra hard time making this adjustment.

As for the panic, it sounds like you are doing all the right things. Catching yourself (even if it is 500 times each day) and re-focusing on your breathing. Remember even when POTS triggers our panic episodes we can help bring ourself back into step if we STOP and focus on our breath. Check to see if you are breathing through your chest or your tummy. Ideally we want to shift our breathing to our abdomen. With long slow exhales.

Recognize your "what-if" mental scenarios that you go through over and over and STOP yourself when you see your mind start to wonder down that same path. Come back to this MOMENT. This tiny moment. Right now. Right now (take a deep breath) recognize that you are breathing. Right now. It is ok. You may notice that as you begin to take big long sighs with slow exhales, your baby will begin to also slow down and feel that new sense of calm eminating from you.

I know it's not this easy. How could we want to be in the NOW when the NOW is so terrible? I struggle with this a thousand times every day myself. Many days I think I am losing the battle. I feel too sick. What did I do to bring this on again. I lost another 2 pounds. How am I going to make it to the doctor. What if ..... It's easy for me to go down that well worn road. Deep breath. But as I am able to focus again on just this tiny moment, and breath deeply I can ground myself (even if only for this instant) in a place that is spacious and free from the noise.

Be good to you. You are an amazing pioneer.

EM

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I was chatting with a friend of mine as I was reading some of the replies to this topic and she said " no matter what people say about the internet , you have to wonder what people like us would do if we didn't have access to each other through this site" I'm very thankful we have each other to turn to when it gets this hard. I noticed in your asking for support that you were first explaining how you are doing all the things you're supposed to and have done nothing to cause this "episode" . So my first piece of advice is to not blame yourself or feel you need to justify feeling out of control. Your schedule is demanding and your body just requires more care than most. I'm going to pray for you and know in my heart that you'll make it! As far as your baby is concerned , I can empathize in that situation. My youngest is 4 and still there are times when my parents have to help ,I'm lucky that they live close and I have friends near to help. I also know that your probably like me (sounds that way) and dont want to need the help of others to take care of your child. So pay close attention because when I'm sick next you'll need to remind me I said this!!!HA HA Your friends and family love you and it isn't an imposition to them to help you just like it wouldn't be for you in a reverse situation. ( I'm good at advice as long as I'm not recieving it ) But really try to take it easy because stress will only make it last longer.

Hang in there!!

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Ethansmom - I feel for you because even though I was just diagnosed last year, it was the hardest thing I've ever been through in my life (and still a continuing struggle to find help). During the very worst part of it, my husband, as wonderful as he is, was as supportive as he could be in some ways, but in other ways I felt totally deserted by him and I still have some hurt over that even though I forgive him because I realize how could he understand when I don't. Sometimes he is still kinda' short with me in his responses and doesn't seem to understand why I don't feel like taking off here and there and doing this and that all the while claiming to understand....its a fine line sometimes.

I totally understand your frustration and you are doing a remarkable job at doing what you can....I have trouble getting the fluids in and the food too...I'm just not thirsty enough I guess...I really need to force fluids so it sounds like you are doing a lot to help yourself.

I hope your boyfriend can become more understanding and helpful to you in taking care of that baby and other things until you get back on your feet if your mother cannot stay. I will pray for you :D This board has become my life line since I discovered it 2 days ago. It helps so much to talk to people who understand. First thing is I would stop being so hard on yourself and worrying about accomplishing everything...take it one day at a time...that is my new motto (although sometimes admittedly it seems like the Groundhog Day movie..the same day over and over again :) )

Here is an inspirational little quote that helps me to be patient through this ordeal:

?Lead Kindly Light?

Lead kindly light,

Keep Thou my feet;

I do not ask to see the distant scene;

One step enough for me.

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Well said, Earthmother! I like the idea of focusing on the NOW. Great advice. Our thoughts tend to run away and take us down the wrong path.

Ethansmom, whatever is going on at the moment, know for sure that it will not last. Nothing stays the same. There are better times ahead. I guarantee it.

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Jess, living with this for my entire 39 years, I can tell you this: you'll go through cycles of good and bad, all of varying lengths and intensities.

My best advice is to stay as positive as you can, while continuing to seek answers and help in the medical realm.

Hang in there. Nina

Edited by MightyMouse
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First, I will pray for you tonight and when I think of you.

Second, can you put your son in a daycare temporarily, till you get through this hump?

Third, could you take an incomplete on your classes? I've had to do that before. I know it would be terrible when you're so close to graduating.

I feel so bad for you. I wish I lived closer so I could help you with your baby as I'm doing good right now.

I know the above thoughts are not what you want to hear but sometimes it's better to step back a bit so that you don't lose it all. I had to quit my part-time job last year and also had to drop a couple classes because of my POTS. I freaked out a couple times when I had some bad spells and couldn't even talk but I got through it. I think my fear was more that I wouldn't get through the spell.

Also, if I may say so, the panic-attack like feelings you have may not be you being stressed but may simply be your autonomic system malfunctioning which then provokes everything that goes on physically during an actual panic attack.

I had major problems when the pharmacy gave me meds in the regular formula instead of extended release. After a couple days I managed to call the doctor and the nurse told me that for POTS patients and this med it must be extended release or you run into big trouble and she called my pharmacy right away. They re-did my meds and I recovered but it was scary.

I feel bad and will pray for you. Wish I could help.

Sarah

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Guest tearose

Hello again little mother! I couldn't get your struggle off my mind and wanted to reassure you that love and support and positive energy and prayers are all around you. Just believe and you will get through this. When my two sons were little like Ethan is now, I remember feeling sad that they would remember me as a "sick mom" and I let myself feel awful until I realized I could turn this around. I decided that the "good thing" that I would teach them from my horrible struggle was that when life gets really, really hard and you don't know how you will get through, you ask the universe/force/supreme energy to send you the grace to take just one step...and then you dare to take it. I showed them that mommy was sick but then she learned how to pick up and continue on. I taught them through my actions that they too will have the strength to move on when life throws them an unexpected curve. As I look back now, I think it was for them that I learned how to pick myself up. I seriously believe that this has contributed to my sons becoming compassionate, responsible fine young men. Please, let me know how else I can help, my hand is there but I know, and you know and Ethan knows that you will pull up! With love, tearose

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Dear ethansmom,

Wow, it sounds like you are going through a miserable time!

For me, the key was getting the anxiety under control. This first step allowed me to at least make it through the day. For me, Paxil CR in the lowest dose (12.5 mg) was a life saver. It really calmed me down and allowed me to think logically and actually go to my medical appointments and the grocery store (without panicking).

I hope you improve quickly!

Lisa

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Have you tried putting an ice pack on the back of your neck? This helps me when things are really bad. I even keep one of those "snap" ice packs in the car in case something happens while driving.

Another thing that helps is singing. Sounds crazy, I know, but it has to do with how you breath while you sing. My EP suggested this, and darned if it doesn't help.

I know how tough it is to hang in there when you feel lousy. I've got three kids, 10, 10, and 7, and some mornings getting everyone out the door and me to work is enough to put me over the edge. So, I slap an ice pack on my neck, and sing my heart out on the way to work!

Hang in there!

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I just wanted to say THANK YOU to everyone for your encouraging words and advice. Thankfully, these periods of terrible symptoms are few and far between most of the time, but this has been a longer stretch than normal, and it's fabulous to have such a great support network to help me through.

I saw my regular cardiologist this morning and he seems to think that I am overextending myself (what a concept :) ) and that the weather fluctuations here might be playing a role as well. I told him about the panicky episodes (like the one in Wal-Mart) and inquired about anti-anxiety meds. My pride has stopped me from asking for them until this point, but he agreed that Paxil might help with the anxiety and to help me sort of relax and not be running on adrenaline all day long. I am going to post separately about that topic...but at any rate I can't take it until I stop breastfeeding so I'll have to hang in there a while longer- and keep talking myself down 500 times a day :D

The other good news is that my doc agreed to treat me for free since I have no insurance right now, and proceeded to "officially" offer me a job working in his office every other Friday (for now, with potential to increase the hours later based on how I'm feeling). He even invited Ethan along since it's in his pediatric practice!! So I'll be starting in 2 weeks, which hopefully gives me time to recover from this little episode. Thanks again everyone for taking the time to read and respond...hope you are all feeling well today!!

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;) CONGRATS!!!! I guess everthing does happen for a reason! I'm glad to hear that you have a really caring doc, that's priceless! Good Luck on the new job and as for the anti-anxiety meds, pride shouldn't be an issue - you have a very complex illness and sooner or later we all have to get help dealing with it one way or another! I read somewhere that if a patient that has POTS isnt depressed already then they will be before it's all said and done! Take care and relax!
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