Disappointed, POTS-y, and scared

[Merrill]

Hi all ... I first introduced myself to the group with a post about impending IVF and hopes for a successful pregnancy despite the POTS ... Well the last few weeks have been intense to say the least, and today I found out our attempt was unsuccessful. Meanwhile, I can barely walk at all without feeling winded and exhausted (I was hoping it was the hormones, but noooooo, it's the pots...) and with rather intense tachycardia that's freaking me out a little. Yeah, I'm doing the gatorade and salt, and eating well and all that... but can I just say, SHOOOOT!

Perhaps the stress in my life made all the difference, but I'll never know for sure. Dad fell and broke his dominant arm the day after the implantation; he's been in the hospital all week and today I'm transferring him to a nursing facility for healing... It's all been overwhelming, but I've been holding up OK nonetheless. (Husband out of town, no siblings here, I'm totally on my own.) Crazy, huh?

So what am I scared about, I ask myself. That IVF will never work (we've got 10 more frozen, so 3 more attempts are possible, I guess), that my body's a rather inhospitable place right now, that the POTS is getting worse and I'm on a slippery slope, that summer's coming and I've been in denial about how hot these compression hose are going to be. I'm already grieving the loss of shorts and sandals... let alone the possibility of a family.

Oh, woe is me! Sorry to sound so crappy today; hubby home tomorrow, and things will be brighter then. Yes???

Merrill

[denabob]

I'm sooooooooooo very sorry!!! I hope all improves soon! They say "bad things come in threes" sounds like you've got yours out of the way for a while

You know....when you're down and on your back there's nowhere to look but up?! Pray( not sure if you've ever mentioned your "religious" preferences or not but in an instance like this-or any other for that matter- God is the only one who can help!! I'm sending you hugs and prayers and hoping you'll feel them both.

Do your best to relax (easier said than done I know) turn the IVF over to the Lord we never know what his plans are for us!

Worst case senario: friends of mine lost two children to rare genetic disorders and then found out that her life would be in jepardy if they tried again! Now they are adopting a child who might otherwise not have had a good life!

Silver linings arent always clear but they are always there!

Hope you feel better soon!

Deanna

[MightyMouse]

You're allowed to feel "woe is me" right now!!! You, your body, your mind and heart have all had a stressful number of weeks. Part of the goal of this forum is to be here for support. I've taken my turn on the "woe is me" platform too. So, it's your turn now. Don't feel badly for venting...that's NORMAL.

Thi, too, shall pass!

If you can, try to focus on what you CAN do now rather than the bad stuff. I know that isn't the easiest thing to do...perhaps still give yourself a bit more time to be sad because that is VERY normal. But, when you are ready to start thinking about what to do next, think as positively as you can.

It's important to do things for yourself that help you to set the stage for feeling better inside. Everyone has their own ways...for me, I've practiced some Buddhist meditations...even just reading about that culture made me feel good. Their way of thinking is so positively oriented that I couldn't help but feel better afterward. After a while, I started practicing some ritual components to help myself get into the right frame of mind. For example, I set up a small area in the house that I use to meditate. I put up a wall hanging of one of the dieties that is supposed to be a positive influence in moving through life. I would light a candle and just practice breathing...

Anyway, it helped me immensely to get through a year of being completely homebound and having had multiple spinal procedures and surgeries. I still use those mediatations 2 years later. It helps me deal with the stresses of everyday llife...and with the extra stuff that comes my way, like my health issues.

Hang in there as best you can and feel free to ask us for any help we can provide. Big, giant hug! Nina

[genie]

You absolutely have the right to feel low and sad. There is a lot to deal with, physically and mentally. I find that having friends to call in cases of emergency ?pity parties? J Does help. Also, some sunshine, even if it?s opening the shades and looking out for a bit helps me too and some fresh flowers, what?s your fav, they always brighten the room a bit too. But, all in all you are grieving and you have the right too. Take as long as you need and know that you have support here!!! Sending healing energy your way!

[Merrill]

I can't thank you enough for your kind and gentle words tonight, my friends. They are so important, and they mean so much.

I didn't mention in my earlier post that my brother, who lives across the country and with whom I'm very close, was recently diagnosed with MS... He is suffering, truly suffering right now. It's horrible--the meds aren't working and he's so sick and sad. It makes my own stuff seem so incidental--in the scope of the many things I have to grieve for, I actually think it tops the list. (Perhaps I protect myself from fully feeling my own experience...) I say this now, I suppose, in the hopes that people who read this and believe in the power of prayer or positive thinking or healing energy or what have you will include my brother in your thoughts tonight.

MM--I think I might enjoy the Buddhist meditations you wrote about (Thic Nhat Han, right?) I have a friend I can borrow from. (You had such a brutal year...No fair!)

For tonight, I'm cuddling with my parrot and watching The Daily Show (Jojo and Jon Stewart can make me laugh no matter how sad I feel.) And I think it's time to reread Judith Viorst's excellent work "Imperfect Control." (She also wrote "Necessary Losses," which I haven't read but think I now should.)

Thanks again...here's hoping for better days for us all.

[MightyMouse]

I have a Ticht Nhat Hanh cd that I love to listen to...even if just to hear the cadence of his voice--very melodic. Mostly, though, I just practice breathing without anything more than maybe repeating, to myself, some of the tenents of Buddhism, such as "use kind words, use kind actions, eliminate the causes of suffering..." etc. That means to others just as much as to YOURSELF.

I think you did mention somewhere before about your brother being diagnosed with MS. There are many things in this world that help me remember that I am, even with all my bodily oddities, pretty lucky. When bad things like that happen to someone you love, it tends to snap you into a different perspective, huh? Not always an easy thing, but I suppose that's all part of being human. Big sigh.

Nina

[Guest tearose]

Dear Merrill, I am so sorry for your loss.

I hope you will try IVF again. When/if you do, let us know so we can all visualize a strong, solid implantation with you.

Is the fast heart rate still with you? Are you having too much sugar? Are you able to switch from gatorade to a sugarless or sugarfree electrolyte? I love to have my sugar in the form of cakes so I limit the sugar I drink. This helped me have the best of both worlds.

How's the nursing facility working out for your dad? It is so hard to see our parents fail before our eyes. I'm sure he is being well cared for, he would want you to keep strong too... let the facility do their magic and take care of him! We can't have you wearing yourself any thinner.

About compression pantyhose...I couldn't live without them but wow are they a lot of work. From experience I can tell you that you will grow accoustomed to them over the warmer weather. They will wick away any sweat you may produce and you'll actually feel a coolness at times. Juzo makes a variety of pressures, styles and fabric contents. I switch between cotton content over the summer. For me it is a choice between dealing with swelling/more pots symptoms OR compression/ less pots symptoms. Try to play with what works for you. I changed my wardrobe too. I have some crop pants but even more wonderful is this fabric that is a bouncy knit. You get it overpriced at chicos or at inexpensive at QVC and the line is called citiknits at QVC. I live in citiknits from spring through fall.

Oh, please don't ever hesitate sharing your frustrations, dissapointments or pain. We all a familiar with the "it could be worse, who am I to complain" thought pattern...but this is not always the right place to jump to. We must support each other and not diminish our real saddness and pain over the struggles with our bodies when we experience it. I promise to do my best not to let you stay in that introspective solitute too long, but I think the healing that comes from the "darkness" is spiritually transformational. With love, tearose

[MomtoGiuliana]

Merrill

So sorry that you had a disappointing first try with IVF and that your symptoms flared on top of everything else. You are going through such a tough time right now and I sympathize with you--and send my good thoughts. Any even minor surgical/medical procedure sends me into a bad POTS episode. I wonder if the IVF procedure did the same to you.

Meditation does help me too, and breathing exercises (have you read Spontaneous Healing by Dr. Andrew Weil? It's a helpful book, especially for times like these.)

Allow yourself to grieve.

We're all here to support each other as much as we can, so please write as much as you need to.

Katherine

[Merrill]

Thank you so much, dear friends, for your kindness and suggestions for calming and nurturing the spirit and cooling the body come warmer weather. I will print them all out and refer to them in the days ahead (and read and reread all your words of advice and compassion.)

Dad made it through his first day in the nursing facility (I just can't bring myself to say "home" -- he swore he'd never go to one and made me promise years ago I'd never "put" him in one!) and he's doing fine. Don't know how long they'll let him stay... but we'll work something out.

My IVF doctor, who I love, told me he was sorry it didn't work out this time, but he's not giving up on me. (He was out of town during the most intense 2 weeks of the cycle, and only just found out how productive the old ovaries turned out to be!) We're out of insurance money, tho, and may actually have one more try ahead. But we'll do it, and it will be less physically intense for me... and anything less physically intense for me right now is a very good thing indeed.

Bless you all,

merrill

[mindylee1]

merill,

I know how hard it is to smile right now. It seems like when it rains it pours. Just remember you are never given more then you can handle. That means you are a strong person, which may seem hard to believe somedays. A good friend once told me that after evey rainfall there comes a rainbow. Although our rainbows maybe small ones we must take them for what they are worth. I wisht the best for you. Medidtation is a wonderful idea. I also have printed out some of the encouraging responses... they sure do help.

hang in there

Mindy

[EarthMother]

Thank you for sharing how hard it has been for you. Your story amazes me. People ask how do we work .... well what you described seems like the equivilant of three full times jobs. What a POTS pioneer! I think able bodied people would be having a difficult time given your circumstances. The fact that you have kept going is an inspiration to all of us.

I love the book list we are generating from the responses. I have been enjoying Pema Chodron for my meditation journey. Recently I started reading Eckhard Tolle -- what I liked was the way he could weave so many belief systems into a common present truth.

Katherine's book recommendation on Andrew Weil is also terrific. I read it early on in my healing journey and become a big fan of this holistic practitioner. In fact, Dr. Weil has a great web site with lots of free advice. Here's a link to an article on IVF:

http://www.drweil.com/app/cda/drw_cda.html...uestionId=89074

With light, love and laughter,

EM

[Merrill]

ooh ooh, more good resources! Yay! I'm having trouble loading the Weil article tonight, but I think I know another way to go after it (through the home page). I'll definitely take a look. (A friend at work is on the Weil email list and gets articles and recipes that she often forwards to me; so many, I'm learning, are Weil devotees... I'll probably soon be one too.)

So I have a funny (?) story I forgot to share last night about my conversation with my IVF doc (who had only heard of POTS but knew little until I sent him the article my cardiologist sent me and I told him what I could). Apparently at 42 I had an extremely rare reaction to the stimulation meds, producing 19 eggs, 15 of which were worth their salt and fertilized. (I never told y'all what kind of intense pain followed... couldn't stand up straight or work for a couple days.) When I reminded him about the POTS and that I've been a bit more symptomatic lately, he spoke of a patient with thyroid problems whose hr was 90-95. I started to laugh--That's nuthin', I said, I'm doing 150-155 just walking down the hall! Long pause. He then told me he was glad I didn't have heart failure. Excuuuuussseee me? I didn't completely follow everything he then explained; my brain stalled with the words "heart failure."

We agreed that even though our attempt was not successful, I should keep tomorrow's appointment with a cardiologist who specializes in pregnancy (pregnant cardiac patients, I guess). I made the appointment back when I was sure we couldn't fail! Anyway, I'll find out how dangerous it is for me to pursue all this... and I'm praying she knows something about pots! I'll let you know if I learn anything interesting. Who knows? There may be others out there in a similar situation who will come searching the forum for stories from people like me.

Take care, everyone.

m

[Merrill]

Just a quick follow-up b/c I saw the new cardiologist today ... I really liked her a lot, especially when she answered a convincing "yes" when I asked my first question: whether she knew what POTS was and whether she had worked with pregnant pots people before. Not many, of course, but enough that she understood my concerns, was thorough in her interview, and considerate in her advice. She looked at my previous test results and said that I would not have been in danger of cardiac failure--even after being overstimulated with the drugs--because my heart is healthy. (Someone with an underlying cardiac condition could have had problems with the amount of retained fluid as a result of the medication. But not me! Phew!)

She wants me to switch from compression knee socks to the pantyhose to the waist! (Move over tearose, I'm joining you...) I can't stand anything tight around my waist... ugh... but she insisted on it, or said the thigh highs would be OK if I really couldn't do it. She also wants to see me start some conditioning training... doing a little walking with the pantyhose on. Never do it without them, she said. She also emphasized the 2.5 litres of water a day and salt. All in the name of lowering my heart rate. And I found out it's true that hr should never exceed 160 in pregnancy--and that bedrest could end up being part of my future. We'll see; and I'll see her again if I ever make it to the end of first trimester. So that's the scoop. Take care, you guys.

m

[goldicedance]

Glad that you found a cardiologist that can be helpful. Word of caution--bedrest could be terrible for a POTS patient. On bedrest, your body would release more fluids and you would get really deconditioned. Then, when you stand up, you will really feel faint. Bedrest affects people without POTS in the same way, but for us POTS people the situation becomes exacerbated.

On a brighter side, you might want to try drinking ice water when you are not feeling ok. Put your feet up and enjoy a glass of ice water. Apparently the chilled water causes your gut to tighten up and then helps stop the pooling of blood in your legs. I have heard this now from two docs who are experts on treating POTS. One doctor (Dr. Low) called it a self infusion.

Keep us posted on how you are doing. You know that you have friends out here in cyberspace.

Good luck and most importantly feel better.

[Jersey Girl]

Sorry you have been going through so much lately. I was pregnant at 41 with my 4th and delivered at 42 (Now I'm 51 1/2) and I developed POTS at age 49 1/2, but always wonder if I didn't have symptoms all along, especially after what happened after the last delivery and I ended up in the hospital for a week because of the terrible leg swelling --my legs had no shape to them and I couldn't walk (Was this a predictor of things to come?) I was totally deconditioned initially but finally felt great a couple weeks later at home. I had been on bedrest for 12 weeks prior to delilvery for premature contractions. I truly believe there is a hormonal connection to POTS (mine possibly perimenopause at this point)--and Dr. G at NIH agrees with me, he just doesn't know what it is exactly. I don't know how we manage to get through anyone's elses crisis when we are continually having our own, but we do! This board is wonderful for those of us with POTS.. I think we're the only ones that can really understand what each of us is faced with. I will hope that your next IVF is successful but don't wait too long to get onto an adoption list--the older you are, the older the child who is available to you for adoption.

[Merrill]

Thanks for your kindness, JG... I'm beginning to think that the reason we ARE so good at managing the crises of others is because we have become so accustomed to managing our own.

I'm a little confused by your last line ... Do you mean that if we adopt 7 or more months down the line when I'm 43 (husband will be 44), we're less likely to be able to adopt an infant?

take care, m

PS Just found out I'll be on pill in April; next try in May.