Rachel Cox

Does anyone else have anything they do to help them along? A cuddly toy or a pet? A favourite pair of socks or funky hat? A "silly" thing they do to get by?

Hi Poppet.

I am a closet doll player. thankfully i have a daughter and my dolls have become 'hers', but honestly when she's at school I LOVE to get out the hairbrush and brush sarah's hair... i like to dress them all and launder their clothes! I CANNOT believe I am admitting to this!

Recently my big sister (nearly 40) asked me if my daughter would like her 'old doll'. Well, that doll was the object of my affections all my childhood and big sis never let me play with her. She's like a real baby, weighty and the perfect size for newborn clothes. my daughter was mildly interested, but I had to really refrain from shouting with glee "YES YES YES!". So finally, Annabelle has found her home with me! I bought her some new clothes and washed her and re did her hair. She looks even better than i remember from when i was a little girl. From time to time I tell my sister how much the kids love annabelle, but the truth is, it's me. the kids play with her a little bit (very carefully, I think they know she is special).

if i let myself, i'd play dolls all day, i'd carry annabelle in a front pack to the shops! i know, i am CRAZY.

nobody knows this except for all of you! I LOVE THIS FORUM!

Rachel

How did it go?

I went to mine last year, before the disastrous resurge of POTS and after losing 17kg. Felt amazing. Bumped into a guy I 'Went out with' ...briefly. His jaw actually dropped! I will live off that moment for many years! Tee hee!

Did you re-connect with anyone that surprised you. Do tell!!

Rachel

Hi Valerie,

I'd like to know more about licorice root too. Does anyone know if you can you take it with the other meds or is it instead of?

thanks,

Rachel

Hi Maisie.

I just wanted to write to you. I am a Mum, but there were times in my twenties that I doubted it would ever happen. I was told that because of my endometriosis I would need to get pregnant earlier rather than later (they told me this at 17). Well, thank goodness i didn't have "the Daddy" at that time. When eventually i found him ....some thirteen years later... I was able to have a small surgery which made it possible. When I was seventeen the advice I got was really different to what they told me at 30. Now, I know POTS and endo are entirely different but I guess what I am saying is don't underestimate the progress that can be made in the time between now and when it (may) be right for you to have kids. They might just figure out this POTS by then and be able to re-code our autonomic systems (dreams!). It might not even be an issue for you. Just hold the idea of having kids in the way all young women your age do. Keep it in your heart and nurture it with some hope every now and then. The rest of the time, focus on you and your health, on finding a partner who will be your best friend. I think it is excellent to be wondering and trying to prepare yourself for any eventuality. I just think that on this count it isn't worth worrying about it not happening. What's that saying? 99% of our fears never come true.

Thinking of you,

Rachel

Hi Elfie -

I have a lot of empathy for you as I had the experience of having to transfer colleges and move back home. Only you can really make the best decision for yourself in the long run. That said, I strongly caution you to think twice before moving into a place with a serious mold problem. Certain kinds of mold can be neurotoxic and can make you very sick. Symptoms of mold exposure can also mimic POTS - such as fatigue, dizziness, etc. Has your family had air testing done? Could remediation be moved up and done before you go home? What may not affect your other healthy family members could seriously affect you on a long-term basis. Something important to think about before making any major decisions!

Kristen

Hiya, just a thought that occured to me reading Kirsten's post. I don't know if it's useful or not...

oil of cloves is a great mold killer and can be sprayed on (without the fume prob) and wiped off next day. it's not a high energy kind of job to clean it off then. it kills the spores and is non toxic for people. great for areas you need to use (like your own room and the bathroom) more frequently.

i can only give my opinion about the home situation which is only worth 2 cents!

I think it is worth it for the short time you'll be gaining benefit for your future. When you get aggro from your brother, don't be judgemental, just give him sunny smiles back. Acting in the opposite to aggressive people can sure surprise them. I think it works most times. you'll be able to try the new drug and have a good doc and your mum really close. i don't know what to recommend about your dad, but in general i think it's worth trying something difficult for a short time to get long term gain.

let us know what you decide to do!

....no question in my mind you should leave your current course. don't let the turkeys get you down!!

Thank you, both of you! It did my heart such good to write it down. My husband thinks we should write a letter to the pre-school to explain POTS (not that I haven't tried...) and explain how that comment was received.

I really like the pre-school, and until yesterday, would have told you that the supervisor was a sweet heart. I feel bad knowing that they (she) thinks I am just a complainer who takes up her time. It's disappointing.

but onward and upward. I think a letter is a good idea, I will try to not be too emotive, obviously my feelings aren't welcome! Nonethless, I think my point of view is valid feedback for them. If they don't listen we may have to look elsewhere for our son. Our little girl is starting school soon. It's so sad when a place doesn't live up to its founding philosophies. We chose the centre after weeks of visiting pre-schools around the city, researching early childcare and carefully deliberating. One of the things that appealed to me was the community focus and how they talk about valuing the individual. They cost so much more than the others but I thought we were getting a really professional, seriously caring environment. Now I feel quite disillusioned. I think I will need to resolve this.

do you guys think a letter is appropriate?

Rach

Hi, I know many of you will have discussed this before, so please bear with me, I need to vent!

I went to my daughter's parent teacher interview yesterday. it was a massive challenge to even get out the door yesterday, it was a bad day following a really bad night. but i did get out the door.

when I got to the pre-school, with my two children in tow (you know the marathon, just getting out of the car had me spent) I was greeted by the centre supervisor who said

"Hi Rachel, how are you? -no, wait, I asked you that yesterday and regretted it!"

she then motioned me into the interview room to discuss my daughters progress.

I know I am sensitive to people's dismissal of how I am feeling, but I felt really aggrieved yesterday. I am a teacher myself and I thought that comment was so insensitive and unprofessional. I was on the back foot immediately. I want to address the issue with her or the centre but I also don't want to make things awkward. I don't like making waves.

It's just that I think them not 'getting it' is a real problem. Not getting it means they don't understand my kids either.

They said that my daughter is over-sensitive and cries a lot. Small wonder, we've had some really tough times at home lately, not the least of which was my sudden admission to hospital, subsequent operation and my daily struggles with ...everything. They think she needs to 'harden up'. I just wanted to cry. How many times have I been told that myself? She's only four for crying out loud.

Anyhooooooooo. I am grateful for this forum, your thoughts would be so appreciated.

Rachel

In my case having two became a help because they have each other to play with (and fight with)!

Me too. I have two, a four year old and a two year old.

I credit them with providing me some really solid motivation for getting up!

I think it is probably easier with two because they can hang out together and laugh at the silly kid-funny-stuff that only kids get. Mine love me to start them on running races (I can just sit and call out ready, set GO!") and we do wacky races too. You know, racing like a frog, or an elephant, or a hippopotamus. They get really tuckered out and you can do it indoors (down hallways) or outside. Most of the time they dissolve in fits of giggles watching each other run in such bizarre ways. I alternate the winning criteria so the littlest can win too... they don't notice that I'm not running, after all, they're egocentric, they notice what THEY are doing!

We also engage in lots of verbal games. We make up lots of nonsense poems with rhyming words. I start it and they have to guess a word which finishes the line. This is fantastic pre-school stuff, gets them used to word families ahead of time.

they especially love it if the word has to rhyme with the ew/oo/u sound... invariably they guess POO and it cracks them up!

It is really hard to inject your voice with enthusiasm when you feel like this, but worth all the effort you can muster, I think the kids give you more of a break even if they've only had ten minutes of your focused attention. It's like pay ten to get twenty.

Other favourites are bath play (brilliant on a rainy day), making music with stuff they can find from the cupboards or the toy box. They love playing musical statues (FREEZE!), i just put on a kid songs CD and then hit the pause button. the suspense really gets them going and the only thing I have to move is my finger! Dress ups are a big favourite too. We choose a character from a story, or make one up. Our friends donate old bits and pieces to our dress up box (I think they are happy to have a gift suggestion that doesn't cost much). Grandparents love trawling second hand shops for costume jewellery, outlandish shoes and hats. I don't dress them but let them try to get things on themselves. Accessories make better dress ups for that reason!

For me, organisation is the only way any of this can happen. if your husband or a friend can help you to set up the night before you can get a couple of TV free hours of fun out of it. Then everyone can flop down next to you in front of the TV at the end. Thank goodness for TV, it is a godsend. Just thought I'd post these ideas in case they are useful to anyone!

Rach

PS. does anyone else here go stark raving bonkers when they hear cartoon voices?! I am SO OVER kids TV!

Unfortunately, you probably aren't too young for cataracts or glaucoma. I was 'too young' for heart problems, so they didn't consider it until the very end of my testing, but that's what it was. There are too many cases out there that prove one is 'never too young' to get what are typically consider older person's diseases.

How do you get to the doctor? Do you have a wheelchair? Somehow, there has to be a way to get you some help.

Hi Radha. No wonder you are afraid, that sounds terrible.

I went to my eye doctor yesterday ( I post this because it was information for me but it is related and might be useful to you) and she told me that people on routine doses of steroids are at greater risk of cataracts, so need really good sun protection for their eyes. also, the increased ocular pressure which is common in POTS can lead to glaucoma. once the optic nerve is damaged it can't be repaired so somehow, you need to see someone. I am 35 and my eye doctor is very concerned about both cataracts and glaucoma. As i am learning, there is no such thing as too young for anything. the treatment for glaucoma, if it is caught at an early stage, is simply eye drops.

I don't know if this will help you, but eyesight is very precious and if you need to scream really loudly to the people around you for help, please do!

-Rachel

...trying to get a perscription for compression hose has been interesting. i have found some others that are slightly (ahem) more sexy than the white/blue jobbies. they are hideously expensive here in NZ, as they're imported from Switzerland. they cost me $120 a pair! i only got two but it is a challenge to get them through the wash in a timely fashion. nothing is fast around here. i notice a real difference when i wear them.

...i ramble too. great to find another rambler!

It isn't a classic POTS finding, but many people who faint on the tilt table have a period of asystole, where the heart temporarily stops. The TTT can trigger a strong vasovagal response which slows or pauses the heart for a short period. The usual treatment for this in adults is a pacemaker which will prevent the heart from going too slowly or pausing. These vagal reactions can be dramatic but are not life-threatening, in fact many children with RAS (reflex anoxic seizures or reflex asystolic syncope) have lots of these episodes with no long-term adverse effects.

Flop

thank you. you guys know so much. it's like having a POTS encyclopedia on my desktop!!

wow! this forum is fantastic. this is close to one of the conundrums i've been facing. i don't know what hookah is, but since my diagnosis i have turned back to cigarettes. not for medicinal purposes, but out of emtional desperation. they made me feel more in control of my life (go figure!) I know that is crazy. but the nicotine thing has been on my mind and I wondered if I could use patches or gum. I was too embarassed to ask my doctor but i think now I will. smoking is so horrid to everyone else and I know my husband is worried i will get back to a smoking habit like i used to have. i don't want that on top of everything else, just want to feel better.

...maybe i need to find out about hookah!?

I have too. a nurse once told me that the body is at its weakest in the wee small hours. the defenses are down. apparently that is the time of night in hospitals and nursing homes when they have the greatest number of deaths too. not to say that we are dying, not at all, just that our bodies work pretty hard all day and I guess we wind down more than most some nights. it does make you wonder ...and fear for the worst. Interestingly, my pacemaker recorded an incident at 4am when i felt that way. It had to pace to get my heart rate back up, I had gone from 80 to 180 and back to 50 in less than a minute, without me even moving! I must have been having a pretty good dream!!

Hi everyone, I'm new. I live in New Zealand. When I had my tilt table test, my heart stopped completely. I have fainted many many times in my life and the attending doctor said that when I had faints with rigidity (my words) it was likely an episode like the one on the tilt table ...catastrophic autonomic failure (docs words). It was extremely worrying for me to know that my heart could just stop like that. I have two little ones (4 and 2) and I was really afraid that I might faint upright when I'm with them, my heart would stop and that would be it. If I fall down, the blood return from my legs would usually start my heart up again, like it did on the tilt table. But what if I didn't fall into the horizontal position? I didn't want them to have to deal with that! I have recently had a pacemaker inserted which responds to a fast rate drop and fires up my heart to beat really quickly for five minutes. It has already done its job and I am glad it is in and reassured by its presence! I have also been diagnosed with POTS (which makes me faint in the first place) and I was wondering if anyone else has had this experience on the tilt table? if so, what did your doctors say of it?

thanks,

Rach

PS. I am glad to be here on the dinet forum!