Love, Marriage, Babies

[Kitsakatsa]

Okay, so this time of year makes me a little antsy with Single Awareness Day (Valentine's Day) and all.

Since being diagnosed 5 years ago, I have had lots of social stuff, but I just don't really care to hook up with anyone because I can barely take care of myself. I have lots of friends who are bugging me to date online, but I just think that would create even more stress in my already packed life (full time work in a demanding job, part time school, full time advice from parents, plus part time work in parent's business). Plus, how do you handle a blind date with having POTS? Wouldn't the stress alone do you in? I can just hear "Yes, she died from dating. She was doing her hair and changing into her ninth outfit when suddenly she dropped dead". I really think that can happen.

Then I think of even having kids. I would have to go off all meds..florinef, adderall, compasine, plus tons others, correct? I went off them for 1 day for a test and was just down in the recliner. How do you take care of the kids after you have them? I can assume that they won't understand enough as a newborn to be fully versed with all the Mayo clinic latest research in order to schedule their diapers at a reasonable rate. That is, even if I end up being able to conceive

So, I'm in a bit of dismay and am trying not to be too much of a downer amist the very happy red and pink couples everywhere and I have the following questions:

Have any of you with POTS dated online?

Have any of you stopped your medication in order to concieve?

I find my thirtys are wrapping up and I don't forsee enough energy to get all of this done in the next two years. How have you found ways to cope with a life that is turning out to be a little less than you expected?

Do you think its worth it to pursue love when you may not be able to offer children to your mate?

Still, I'll probably celebrate V day with a Glamour magazine, copious online shopping, 1 1/2 cats and whatever pathetic redbox movie I can find to recluse in with. But, your answers will make it a little easier to figure the whole picture out.

Thanks in advance!

Kits

[firewatcher]

Kits,

Imagine doing it and NOT knowing you had POTS! It ALWAYS seemed so much EASIER for everyone else! I couldn't figure out how these other new moms who were older than I was were managing to even get dressed each day, much less have the energy to exercise or brush their hair!

As to the dating, that is hard even without dysautonomia! Other than a matchmaker or a dating service...no clue...worked for me! I ended up with a great guy who is more than supportive.

I had no issues getting pregnant, and did pregnancy splendidly: after the first trimester, I felt great! I only got infertility issues after my second one was born, they still haven't figured that one out yet.

Not all men are looking for a mother of their children, so don't let that get you down. Despite what you might think, no relationship IS better than a bad one! (been there done that too!)

I don't know if any of this helps you.

Good luck sweetie, buy yourself a box of chocolates and some flowers, rent a good movie and treat yourself to something you enjoy.

You do actually create your own happiness.

[EarthMother]

I had three children with orthostatic intollerance (that's what they called it back then.) I was on a ton of meds for the first one and short term disability for a few months in the middle because I couldn't stand up at all. I swore after a horrid labor and nightmare hospital stay that I'd never do it again. But I'm pretty sure giving birth kills brain cells ... because five years later I decided to give it another go! My second and third pregnancies were uneventful (which is a good thing!) I was heavier for both, which helped in my case.

My personal belief is that when we follow our heart we are led to the place we were intended to be. Which doesn't always mean a picked fence and rug rats. Indeed separating what the greeting card company says we should want out of life and what is truly in our deepest soulful desires can be tricky to decipher. Ultimately I guess we are left to savor all that is in this tiny moment of now.

Good thoughts your way.

~EM

[MightyMouse]

I met my partner while very, very ill, but as yet diagnosed. Nearly 17 years later, we're still together. I've talked to Dr. Grubb about babies, but I've decided it's not a good idea. If I did get pregnant, there are a few meds I would need to stop, but must had a good safety profile for pregnancy...that medication question is a good one for docs who specialize in high risk and I'd suggest you see one before getting pregnant.

We are fine, together, without having kids. I was the one who has always wanted babies more. I still get sad a bit about not having kids of my own, but I do work with so many children that I have no illusions about how hard being a parent is.

If someone truly loves you, they will take you "as is". It can happen when you don't expect it, or like for me, when I was sure I didn't want it or even need it. I know that words don't fill that void for you, but when it's right, you'll know.

BTW, I did try personals before I met Teri, but that didn't work out well for me--I did get a few fun dates, but nothing serious. I know others, both family and friends, that have a wide range of experiences from wonderful to really, really bad. Whatever you do, be yourself and be careful.

Nina

[ramakentesh]

Im married already, but when i go out socially and its an anxious situation I am able to tolerate a small amount of alcohol - just a glass of beer or something.

Otherwise I can find background noise and stuff overstimulating.

Thankfully when im feeling better I just pace myself and Im ok with most things.

[cma]

This topic is so close to my heart. Well especially one part of it. I am in a relationship, actually we are engaged. I met him online and we've been together for five years. He is the most amazing guy I can imagine myself being with and the way he handles all this situation is brilliant. It is not easy for either of us, I feel so guilty sometimes, that because of me our life had to change so drastically. The circle of our friends became very small and we don't go clubing or drinking. But I still believe that everything happens for a reason and I am trying to be ok with whatever is going on in our life at the moment.

I do get scared thinking about the future, which I know isn't very healthy thing to do, but... I would love to have kids, but again I am having so many doubts how I would handle that. It would be a good time actually now that I am spending so much time at home anyways, but I guess it is not time yet since I am having so many doubts how would I take care of my kid. Maybe I am afraid that I won't be a good enough mom if I won't have enough the energy to run around with them, play, take them to fun places etc.

[jjb]

I was very POTSY when I was preg w/ Ava and on all sorts of meds. Course many of them made my POTS a lot worse.

[dsdmom]

kitsakatsa

I don't really have any advice on this since I was married and had my child before I developed dysautonomia, but I just wanted to let you know that you made me laugh - seriously, your post was pretty darn funny. So even though this is a tough subject, it's great to see you still can have a sense of humor - that will help you through anything you decide to do. And you are correct in that newborns (and my 2 year old) are not up on the latest research and will pretty much do what suits THEM, not YOU!!!

[lalalisa]

Kits,

Thanks for your open, honest and hilarious post. You really gave me a laugh today!

I wanted to just chime in and say that love, healthy marriages and children are all possible. It's so worth it. I did get married a few months before getting sick but truly believe that I would've married the same man even if I had been sick. He's been so patient and caring and it's totally worth the stresses that relationships add.

Also, I'm 27 weeks pregnant with our first child. We waited 6 years into marriage and despite the fact that my health isn't improving decided to take this step of faith. I know we will have a different family life than most but look forward to the simple life we are going to have and the love we have to share.

Please don't view yourself as a sick person who's sickness is going to scare away guys. The ones you wouldn't want to be in a relationship with may not stick around but the quality ones will stick around because of who you are. I'm sure you are a wonderful person with tons to offer.

Thanks for making me laugh and again for your transparency.

Lisa

p.s. I also meant to add that I've stayed on Midodrine throughout my pregnancy. My dr. thinks it's much better for the baby than to have me passing out. I did go off of Paxil but that was my preference....my dr. would've been ok with me staying on certain SSRI's. You really just have to take it one medicine at a time and determine what's best....

[MelissaCrystal]

Mine couldn't stand my problems the first few years (thought I was lazy + selfish, pulled him down)---broke up many times, but I had other redeeming qualities that kept getting us back together (he loves having an intelligent girlfriend who is pretty! His words). We stuck with it after the third year when I started looking for a diagnosis, and we sort of pledged that we wouldn't let my stuff get in the way of our relationship. That was the turning point, and now we're happy despite my worsened health problems. It's not perfect of course, but we're great teammates and best friends.

I haven't had an issue -meeting- people, but they do have a tendency to want to run like **** when I start to introduce them to my past (growing up with abuse) and my present (health) conditions. If you're a really understanding person with friendship qualities and practiced empathy, I don't think you're going to have an issue finding someone. Just try not to stress them out with your issues right away, is my advice. Unfortunately, we have to deal with our issues alone for a while before having someone volunteer to take care of us, or else no one will want to! But we've been doing that most of our lives though, haven't we? I do believe if you let the person fall in love with you, not your situation, first.... then they will be more than happy to deal with your situation in order to love you =)

Keep in mind also that a lot of men LOVE to take care of their women, makes them feel manlier sometimes. You may not want that type, but... just a little encouragement ;p

As for babies, honestly, I'm sad that I have been given advice not to. My mom offered to carry my baby though, which is endlessly sweet of her. I'd feel kind of horrible making her carry one at fifty though lol

[EarthMother]

...As for babies, honestly, I'm sad that I have been given advice not to. ...

While it may be the case for your specific situation .... I was told countless things by any number of "specialists" in my day. Sometimes people can only see what is in front of them. I did finally find an OB/GYN who was willing and able to take "high risk" pregnancies. He was knowledgeable and supportive and my advocate every step of the way.

[MelissaCrystal]

...As for babies, honestly, I'm sad that I have been given advice not to. ...

While it may be the case for your specific situation .... I was told countless things by any number of "specialists" in my day. Sometimes people can only see what is in front of them. I did finally find an OB/GYN who was willing and able to take "high risk" pregnancies. He was knowledgeable and supportive and my advocate every step of the way.

In my specific case, EDS caused my Dysautonomia, and I have a type that causes fragile skin and organs. Highly risky for my uterus... Not impossible, but risky no matter what. With my history I kind of think it'd be a horrible idea.

I think anyone who has POTS should not give up on searching for the cause of their case. I'm so glad I know why I have POTS/Dysautonomia. I think if each person was able to get down to why exactly their body has nervous system regulation problems, then it might be easier to make decisions like having kids. I'm going to look into having a test tube baby so that I don't pass on EDS (highly dominant gene) and maybe have someone carry it for me? I don't know.

[Kitsakatsa]

Hello, the is Kits here reporting live from Valentines Day night. In just about a half hour, the blasted holiday will be over and I will return to sanity! I have the suggested movies on, prescribed lovely chocolates, and I just downed the 6th cupcake! On the bright side, my taxes are done and if you can't have a boyfriend, at least get your money back from the government!

I just wanted to thank everyone for replying to my questions. It made me feel much better, and guess what?! I am communicating with a pretty hot guy through EHarmony. He is an ICU nurse and has said at least three times that my picture is pretty. I'm feeling much better about things. Plus, he's in the medical field, so maybe he will understand a little more about POTS than the average guy? Anyway I haven't mentioned anything about my illness. Its a bit overwhelming as it is, and I want him to see me as a normal person first (as normal as I can be, right). So, we should have a date soon. It may have been tonight, but I felt it was a little too soon and a way-big pressure, so I told him I was going out of town. I don't want so much pressure that I actually live out the "died from dating" scenario. POTS makes me hesitate a lot, but then I was buying cat food and litter at Target earlier today and I thought- what a sad, single girl Valentines day activity. So, after the cat food aisle epiphany, I think I will go out with him. Everybody pray for me and my outfit!!!

Again, thank you for letting me talk to you about this. I'd like to get back to a happy life.

Kits

[firewatcher]

Hey girl, don't knock it! My dearly beloved was out of town so I watched a movie with my kids after cooking our own dinner. The rest of the evening was washing dishes by the romantic glow of the pantry light and an early bedtime. GO FOR IT! with the guy from eHarmony! Just don't make your date at the ICU!

[janiedelite]

Hello Kits,

My hubby and I met through an online dating site (before I had POTS), but I became ill just after we were engaged. We dated 2 years before we got married and we'll be married 2 years next month. During the last 3 years, I've had 2 hip surgeries due to a car accident and POTS since 10/06 (when I first went to the ER for tachycardia). We've had severe financial hardship due to my disability as well as emotional heartache as doctor after doctor didn't know what to do with me and told me not to get pregnant. My hubby said that if it meant jeopardizing my health, he'd give up the dream of having a baby.

After being seen at Mayo by someone who actually understood dysautonomia, the doc there gave us the green light on getting pregnant, and I see a high-risk OB next month! I didn't get married til I was 33 because with or without POTS it's so hard to find a quality guy. But I'm so glad I waited for the right one. He really takes pride in being able to provide for us, even though we don't live in luxury on his teacher salary, and tells me whenever I'm down that he'd marry me again anyday.

I've been off all meds for 3 weeks now (except for occasional advil and zantac) and just have to be super diligent about rest, fluids, and salt. We'll see how things go... . If I can get pregnant and have a baby, I will most likely go back on meds at that time.

Hope this post wasn't too cheesy . We've had our rough patches, too, and will have more in the future. But our faith in God and each other helps guide us through the worst of things. I can't imagine dating again, especially with POTS, but I can't imagine raising a child with POTS either...

Take care and keep up the humor, Janie

[cordila]

Kits,

You're hysterical! And while you say you feel pathetic, you gave so many of us a good laugh and that, my friend, is worth a lot. Here's my little story in the hopes it brings you some cheer as well.

I lived in NYC when diagnosed w/POTS. Prior to my diagnosis I was dating a sexy stock broker (SSB), living in a loft in the Meatpacking District and running my own fashion company. Right after I started dating SSB I began getting really symptomatic. I had had episodes all my life but had somehow managed to always brush them off and recuperate relatively quickly. In 2006 that was not the case and the first night I spent at SSB's apartment I spent it on the bathroom floor. Let's just say that SSB had zero tolerance for me and my then-still-undiagnosed-medical-issues and dumped me shortly after returning from an Indian vacation with his ex-girlfriend (clearly he was a winner). I was finally diagnosed but by that time I had gotten so sick that I ended up having to liquidate my fashion company, break my lease on my loft, and move back in with my parents in no-one's-heard-of-Washington. I lived with them for 2 years. TWO YEARS! During that time my social calendar went blank, my ability to leave the house disappeared and I routinely spent whole days in bed. I could hardly imagine living a normal life again and certainly had no illusions about love.

But through copious research online, an epiphany about allergies/diet after a nuclear study, an 84 year old doctor out of Cleveland, OH, and the willingness to lest my body r.e.s.t. I was able to recover enough to move out of my parents house and back into a big(ger) city - Seattle. I've been here now since June 2008. But here is the best part...

I decided I was only going to rent a furnished, month-to-month apartment because who knew how my body would react to life on my own in a big city with a new big job with a fashion company. I certainly didn't want to be stuck in a lease. I found a fantastic loft (YES LOFT) in a very cool part of Seattle and snatched it up immediately. The landlord agreed to meet me at the loft to hand over the keys.

He not only handed me his keys - he gave me his heart.

We dated for 6 months before even leaving the house for our first date. He has been so incredibly cool and generous and protective and compassionate - it awes me. He has a capacity for patience that is overwhelming. I told him about my POTS between our first and second date. I should clarify 'told' - I actually forwarded him my complete medical history. Yes, yes I did. I'm sure this violates one hundred dating rules but I blasted the book out of the water when it came to him. He originally wasn't sure he could take on a romantic relationship due to my illness but committed to being my friend. On date two, when I opened the door, he took one look at me and collected me in his arms and has not let me go. We're approaching 9 months together and it's not been without it's hitches. His parents are from the Middle East and have deemed me 'too old and too sick' and therefore not good enough for their (only) son. This has put a tremendous strain on our relationship. We talk about marriage and kids and both of us want a big family and an active life. The reality is that I am 36 and in ill health and we just don't know what the future holds. In the meanwhile, I try and have grace with myself and allow myself rest when I need it. He currently is on the top of a ski slope while I have not managed to make it out of bed (it's 11am on a Saturday).

I am slowly getting better in the proverbial two steps forward, one step back fashion. After having a fantastic weekend (including going out to a party!!!!) I was feeling so cocky that I ate a bomb of marshmellows and chocolate and had a massive POTS episode two nights ago and have been in bed since. I apologized to him profusely because I now realize that my 'slips' impact more than just me. I realize that I have a responsibility to him to take care of myself - the best care I possibly can and this can be tricky. Why is it tricky? Because sometimes I just want to be a 'normal' person and I get irritated and mad and upset and then I do something, like push myself when I know I shouldn't or eat sugar bombs because I can and I deal with the fall out, which generally makes me more mad and upset. What I'm learning about relationships and POTS is that you have an obligation to your partner to take the very best care of yourself and that includes being open and honest with what's happening to you.

Kits, here's the thing, if you meet someone online I think you should lay it out there. If he's going to stick, he's going to stick. And if he's going to go, he's going to go - and the fact that you have POTS actually has very little to do with that. Living with POTS is just something that some of us live with. Other people live with other things. It's not what defines you and not what makes someone want to (or not want to) be with you. Someone will be able to see that hysterical sense of humor and that winning attitude that says 'I can laugh at myself in spite of all this' and THAT is what makes you extraordinary. I am sending you all my best wishes for your first date! And as far as the outfit is concerned...wear the one that makes you feel the most like you.

xx waterbaby

[Lizzegrl]

Ladies, I feel like I'm reading my own mind on this thread! I am 40, single, potsy, asthma-inflicted and sick of being sick and alone. I want to have fun, I want to DO things! I've tried the online thing, but frankly, have been too sick this past two years to get too far into it. Is it possible? I've sort of given up on the baby idea due to the lousy genes I know I carry, and my constant fatigue, but **** it.. I want a husband, a life! It is good to read that I'm not alone is this whole struggle. Lets keep on fighting the battle. I will keep hoping that there is a guy out there for me willing to take on all of my baggage, genetics and all.