Re: / heart palpitations

April 14, 2010

Hi , - I meant to send this and found it saved so here's a 2nd email from me

this morning while my coffee kicks in.

2 years ago I got a part time job - and then we learned Darwyn would need a 3rd

heart surgery and then my work asked me to work from home which meant no adult

interaction or escape from home which was why I'd needed to work. So I started

having tingly limbs and heart racing and trouble sleeping. Went to Dr to have

thyroid checked, but I was healthy. She gave me a test for depression too. I was

probably on the cusp, but not clinical. So I quit the job (would have preferred

to quit the heart surgery) and started taking long walks when Dar was at

preschool (instead of frantically trying to do work and run errands like buying

the only foods he'll eat at different stores) and the heart/limb tingling went

away. Financially I'm lucky we could do this. Since then we've moved to a

smaller city and also cut way back on those stressful family events. This has

helped with my anxiety levels. No more tingly limbs and racing heart. So - its

not " all in your head " because that seems to imply a weakness on your part. I

think its your body and head agreeing that humans weren't meant to be quite so

overtaxed. If there is anything stressful that you can quit (obviously not

family), go for it. Our society just has to evolve and become more supportive to

parents of extra needs kids, but until then, I've adopted a " do less " attitude

for things that are important but can be left undone so that I can do what is

more important. And sometimes I have to write myself silly lists of what is

most important versus important. Sometimes going for a walk is more important

than a regular dental check up which can be bumped forward a few months.

Mom to Darwyn age 5 DS ASD and too many heart surgeries

Re:

>To all who have responded to these family situations, I want to say 'Thank

you' for opening up. You have no idea how many people are out there in the

similar situations but have no one to fall back on. Please, if anyone is

having a bad day and over frustrated, write to the group and share it. You

aren't alone out there.<<

Thanks, I needed to hear this...

With 4 kids (3 of whom are on the spectrum!), my life can be a total scheduling

mess. Today seems especially bad... had a 7:45 Dr's appt to look at the

cracks on his toes. He got these big cracks on the outer side of the nail on

both big toes, possibly from his orthotics. He used to fan his big toes in

towards each other when he walked, and he turned his entire foot in as well

(both sides). The PT at school recommended Sure Steps but with a longer toe bed,

so they come out slightly past his toes. He also wears derotatuon straps. It's

making a huge difference in his gait (I'm so thankful for this PT!). But it

seems like he's still pressing with that toe, then the skin gets sorta folded,

and finally it started to split. Of course, we'renot getting any bandaids on

there (they come right off). So keeping it clean is hard!

Anyway, he had an appt for that and he brought our 6-year-old in as well.

has Asperger's and OCD. But his OCD and tics have skyrocketed since he came down

with strep. So we asked the Dr for a script to get a blood test for PANDAS. She

refused, directing us to our psychiatrist, only we're no longer seeing her

because after 3 failed med trials, the only word she knows how to say is

" Abilify " . We're seeing a neurologist next week, but he hasn't seen yet so

I dunno.

Anyway, I had to wake up extra early to get the other two ready and get them to

school. Annika wet the bed last night (for the second time in her life!) so I

was up at 1:30 changing sheets and calming her. I don't know if it's not enough

sleep, or the weather, or what, but today my heart palpitations are going wild.

My heart is fine, these are the " harmless " kind but they still make me stop

whatever I'm doing because I want them to stop. My allergies are awful and a

kidney stone is bugging me, but I don't have energy to deal with either (allergy

meds either zonk me or make my heart race, which makes the palpitations worse).

I see Endocrine tomorrow, she will likely tell me that my thyroid is just fine

and not the cause of my fatigue, palpitations, and etc. It's gotta be all in my

head because my bloodwork is always fine.

Friday, we have our IEP meeting for , 9. was dx'd with mild

Asperger's last month. He also has ADHD, SPD, and mild dyspraxia (DCD), and some

sort of language disorder. His needs are not being met at school, though they

try a little bit. I'd like to see him placed at a school for kids who are

high-functioning like he is. With the budget being what it is, I doubt we'll get

it but we need to try. Ugh. I'm so sick of fighting!!!

And with all this, my mom's having a very hard time with her DH and calls up

crying, miserable. She won't leave, though. He's alienated her friends so she

has no support structure, I'm the only one she talks to, and I feel so guilty

that there's just not much left for her with all the demands my kids make on me.

I'm drained, exhausted. Acupuncture has helped a lot but the fact is, stress is

what's making me exhausted... but it's not like I can just change my career and

make it all better. My stress comes from my family and I love them dearly.

Ugh.

April 14, 2010

Hi,

Thanks for sharing your coffee time (and wisdom) with me! I have the tingling,

too, and migraines. The migraines started suddenly around my 40th bday. I've

had all these tests to see why I'm exhausted (more than I should be!) and my

heart palps, migraine, stomach issues, and yea, I get the tingling too.

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