On Turning 40 And 12 Years

[StaceyYount]

Hey everyone!

I have been reading but not up much to posting but today I felt I needed you all. People who would understand. Today I will have been ill for 12 years and each year that passes I say I cannot believe it has been this long. But this year it seems I realize just how much this illness has taken from me. I turned 40 last month and so had to go for my womens yearly check up and basically I was told I was running out of time. Which I knew and it has been something that has been weighing on my heart but not something I was ready to face. But I am running out of time and we had to have the discussion that I need to face that I may not ever be able to have a baby. Though she did say if you want to I will support you...I wanted to scream I can;t even take care of myself there is noooo way I could take care of a baby. I am not ready to face the idea that I will never have children (I burst into tears in her office poor thing) But anyway it just brought home to me that not only has this illness given me pain and suffering it is also taking away things I sooo wanted and things my husband wanted. And it is just not that we would love to travel, he would especially or just even the simple thing of taking a walk down a street holding hands that is just not part of our lives. My father has been really sick and realizing alll the time I missed being able to spend with him because of this. I am screaming inside and the fight and the belief that I will get well is going. I feel like the illness is winning and 12 yearssssss god that is just unbelievable. I have been ill and not able to go or do by myself in 12 years. I try to stay strong I try to stay positive but I guess today it is not possible. So much pain, so tired of feeling like crap all the time even on "good" days.

Just wanted to share with people who understand...friends and family try but it is not happening to them so they can't truly know.

12 years please don't let it be 12 more

Sorry I will stop now and hope that hope finds me tomorrow.

[Kitsakatsa]

I'm so sorry. It seems like you are saying that you've done a good and brave job of stashing everything for 12 years in a box at the top of the closet and just now it feels like the entire box will all contents have fallen on you. The baby thing is a very hard thing to think about. I think about it every day since I don't even have a husband yet etc. POTS does take away pieces of life. I hear you loud and clear. I wish I could say something that would help you. Its just very much not fair. Do you really think that you could not take care of a baby? I don't know if I could, but I don't know that I could not. I think if someone did not have to work outside of the home, and had someone to clean and shop for them, then they could sleep when the baby sleeps etc and be very careful etc. I don't know. Do you think it would be impossible even with the right help?

There are some moms on this board- maybe they can give us insight...

[P SUDIK]

Stacey,I have no great words of wisdom,but I want you to know I do understand and am thinking of you,Hugs Pat

[Maxine]

I'm sorry your having such a hard time right now when you feel like everything is coming down around you.

At one point my husband and I through about adopting an older child, like 3 years and up. Not a baby that I would have to lift, as I'm not supposed to lift more then 10 pounds. On occasion I have lifted my cat, and forget he's 18 pounds--- Babies quickly end up weighing more then that.

We thought about it, but I had so much going on at once with my health, we decided not to. I do have an older son that is 26, and now he is expecting his own baby with his fiance. They are getting married after the baby is born. I pray he doesn't have this disorder. He gets rapid heart rates, but so far his BP is borderline high.-- He's a big dude at 6ft. 2in., and he loves to climb, run, and still like to skate board on occasion. However, his running isn't what he would like it to be, he gets worn out. He is in school, his fiance is in school, and they are both in management at Starbucks. She has a 3 year old daughter, and my son has known her since she was 5 months old, so she knows him as her daddy--- They get so stressed, and I worry about his fiance who is almost 7 months pregnant.

This is so hard to deal with, and I know what it feels like to just want to take a simple walk, and not be able to do that.

My son is from a previous marriage, and my present husband and I tried to have a child of our own for 10 years, and it was found that my progesterone levels were very low. We stopped trying when I crashed with my POTS @ age 41. Of course We love my son dearly, my husband has known him for over 20 years, and has been a good father to him. My son still keeps in touch with is Bio father also.

I hope that you come to a place where your more at peace with your limitations. I'm still working on that, and it upsets me to hear my Dad talk about how he walks three miles every morning at the mall, and he is 76! Don't get me wrong, I'm happy for my Dad, and he is very supportive to me. The old ladies at the store walk faster then I do. However, I'm grateful I can get out and go to the store---

I talk with a therapist to help me through this, and try to focus on enjoyable things I can still do. I push myself hard to keep moving, as I feel my OI would get worse.

This stuff is overwhelming, and I fully understand your need to get some of it out by venting a little----------heck, vent more, that is what we're here for----------------We're your buddies, your shoulder to lean on--- or cry on.

Take care of yourself,

Maxine :0)

[smatuszak]

Stacey,

I wish that I could take all your problems away. God bless you. I hope that tomorrow will be a little brighter.

Sue

[dawn]

Stacey,

I feel your sorrow. This illness is hard to accept. Now at age 51, I can accept it most days without too much bitterness.

The years go by and it is our instinct to believe maybe next year will be better and then it is not. I have been ill over 16 years.

My husband is a very active man, runs, bike rides etc. Sometimes as I lay in bed I resent him.

What has helped me:

My 2 dogs. It is hard to feed them and take them out but I make myself do it.

My husband and I both had a son when we married. They are now 29 and 27.

When I was ill, we did do foster care for older children. They understood my illness and were just grateful to have me to talk to and help

them with homework. Bedtime stories were also a hit. We did adopt one of the boys when he was in 4th grade. He is now 17.

There are many children who are older that want a home. It is something to consider. They don't require alot of care, just reminders

and someone who loves them. They also appreciate the fact that mom is always home.

Try to remember you can still have goals. Yes, we have limitations, but we also have alot to offer.

My son Ben who is 27 always says "mom, when we are weak, HE IS STRONG." I cling to that.

Jesse my 17 year old, has learned compassion, a boy they labeled with attachment disorder, will say "mom, I wish it were me that had POTS."

He worries about me, checks on me when I am napping. A boy they said was "unadoptable."

We are still God's children. He has a purpose for each and everyone of us.

Stay strong,

Dawn

[Guest tearose]

Hi Stacey, it has been too long since I saw you post!

You are right, the time is passing so quickly and we are in a time warp with all these dysfunctions.

I wish I had the right words but I think you will find them inside you very soon.

I think it is good to keep asking those tough questions. These will lead you to answers and many times it is not even one of the original answers we thought we were looking at.

Hope is there, right in front of you. Just sit with the frustration of the pain, own it, and when you are ready to let it go, you will. It is important we allow ourselves to be angry and frustrated sometimes. Just let us know if you are stuck. I think you are on the verge of a new chapter in your life. I trust you will come through and be stronger and wiser for this current trial.

with warmest wishes,

tearose

[cordila]

Stacey; there seems nothing appropriate to say here. Your post brought tears to my eyes. Not only can I acutely share your pain and fear (I'm 35 with no children or husband and living with my parents) but I can cry for you and know how you feel from the inside out. I know we all try to keep a stiff upper lip for the most part but there are moments, times and situations where being sad or angry, upset or disappointed is what makes us human. This suffering is horrid. It's heartbreaking. It robs us of so many things other people take for granted. I won't say 'tomorrow will be a better day' because we all know it may not be. But it may bring the resolve you do not have today, in this moment. So be sad for what you have lost. It's worthy of your mourning. And my hope for you is that tomorrow will bring renewed strength. For all of us...

[MomtoGiuliana]

Dear Stacey

It is good to ?see? your name again on DINET. I?ve been thinking of you. You and I are about the same age. I can?t say anything to take away your very real pain. I wish very much that I could. Does your ob/gyn believe that you could manage pregnancy (it sounds like she does)? Could you talk to a high risk ob/gyn? Many POTS patients feel better during pregnancy and lactation. Would you be able to get support from family and friends with raising a child? I have also thought about foster care as Dawn mentions. There is such a need for foster homes.

I am sorry this illness has taken so much from you. Have you tried any new treatments or meds recently? I seem to remember you have been through a gamut of treatment trials and nothing has been all that helpful.

I am thinking of you.

[mom4cem]

Hi Stacey,

I wish I could find some comforting words to tell you right now. It's good that you let this out though. Hugs to you...

[corina]

stacey,

i don't know what to say, as i know how very blessed i am for having two children. and as i so enjoy them i would want everyone to be able to have children. i was blessed to have given birth to my children before pots hit me full blown (i've had bad periods all my life with fainting and very low bp but always came back to a certain baseline, until july 2001). after that, i haven't been able to take proper care of them (the way i would have wanted and meant to). now they are 13 and 16 and can take care of themselves (more or less of course, i am doing the talking where and when necessary).

i know how much you love children and think i can guess how much you and jim would want to have children. i hope the two of you will find a way to deal with this. i am thinking of you and send you a big hug,

love,

corina

[Sophia3]

Stacey

I am sorry for your pain.

I almost could not respond to this earlier.

I turned 50 last year after having this junk, on premature soc sec, 17 years. So I understand in many ways.

I do not have a husband (divorced years ago, my choice) nor the energy to go out 'socially' and meet people I know the regret of wanting something and thinking things will improve...and then realizing they will not. and actually I always knew they would not but wanted to be HOPEFUL. SOMETHING will be found to be the 'cause of this illness' then, poof, fixed.

Its normal for things to hit you with a birthday which is why I loathe and detest birtdays. We were never big on birthday parties in my family and I am glad...

Just re examine your grief, and cope the best you can...get counseling if you feel the need. Scream into your pillow, cry, listen to sad music and get it out of your system. Then try to work on healing with laugh therapy and the art of distraction.

Just remember this is nobody's fault. Just the hand we were dealt and we cope the best we can.

Be especially kind to yourself in the next few days...it took courage to start this thread.

I must confess, when I first saw the title, i thought you could not acknowledge a birthday..then I thought, why would she not be able to face being 52 as opposed to FIFTY?? (40 plus 12 = 52)

That's how my brain thinks.

Be well and I hope your husband helps you through this.

[Mrs. Burschman]

Stacey,

I am truly sorry for your pain. Losses are never easy, and not being able to have children (assuming that's the way your life ends up) is a loss just as painful as any other.

I know that there's no comparison at all to having your own, but are there any opportunities you can think of where you could "adopt" some children? I don't mean literally. I mean reading stories at the library, watching a friend's older child for the afternoon, maybe volunteering to rock babies at a local hospital? Maybe it would be too painful for you at this point, but you might also find some comfort in making a difference in the life of a child or two, even if it's not your own.

My dad died of cancer when I was 23 years old. I've found that volunteering at the American Cancer Society a few hours a week (just doing various office tasks) helps me feel like I'm helping others like him, even though I could do nothing for him at the time. There's no way I could have done it a few years ago. But at this point, I find it very comforting.

I hope you find some peace, Stacey. We're here for you!

Amy

[StaceyYount]

Sorry I was so long in responding I did not get any email telling me there were responses.

Thank you alllll sooooooooo muchhhhhh!! Your support and more than that your understanding is so appreciated. I send you all so many hugs!!

I am still so sad but am trying to cope with it best I can. I think I tend to just not think about it and then it all hits me...

It is true that you think well this is going to go away, it has to but maybe maybe not and that is so hard isn't it.

It was the first time my ob/gyn had seen me so she really did not understand that I am bed bound most days and cannot take care of myself so a baby would be impossible. I wishhhhhh I could say I could but many days it is all I can do to talk to Mukie (husband). I am actually trying not to think of the whole baby thing to much cause all I do is cry so I figured I need to face it but not quite yet. I gotta get stronger and over this deeeeeeeeeep pit I am in before I can ever think that for sure yes or even worse for sure no. You know that sad thing is I would have wanted a houseful. And it is hard because I am the one that is keeping Mukie from it as well...he is sad too but has never made me feel bad because of it.

It is also you know I have no treatments now, I have tried all the meds and for me they either make me worse or I can not take them. Just did the round of doctors once again. One thing we are investigating is vasculitis and perhaps it is the reason for my horrible headaches. The headache doctor seems to think that it maybe temporal arteritis (sp?) so a temporal artery biopsy is in my future.

I just don't wanttttt to be ill any more!!! She cried! lol

I will keep on fighting but do you ever just think I give up I cannot take this anymore? But then I think of the Peanuts cartoon that said where does one go to give up???

Thank you again...knowing I am not alone helps me more than i can ever say!! HUGS to you all!

[Sunfish]

stacey -

just REALLY quick i wanted to tell you (as i see you're still logged in) to keep checking back b/c i AM going to write out a reply & i'd hate for you to not see it. it's in my head & not typed out yet! later today or tomorrow hopefully...

hugs,

melissa

[Sophia3]

Stacey

I think of the movie from the 70's Network (maybe before your time? )

A guy delivering the news on TV said if you are mad as hello and can't take it anymore, go to your windows and shout that out the windows...

I used to feel like that a lot but THANKFULLy over the many years...learn to live a LOT in the moment...not just a day at a time, sometimes an hour...sometimes, truly, just a minute at a time.

Just hang in there.

[morgan617]

Stacey, I can't know how you feel about kids. I had 2, while very young and before I realized how sick I was. I am so blessed to have them, but I'm not sure it's a vice versa thing.

My kids don't say they missed out on much, but we had 2 vacations the entire time they were growing up. I had to work and was just too tired for travel and the stress involved with it. I was exhausted all the time, so I worked and then was too tired for them. I know I have a lot of guilt about the things they missed out on, because of my health and my husband hasn't had the best time either.

I have days where I feel okay about my life and days where I just want to give up. I do not regret having my kids, but I think somedays they regret having me. So, I guess what I'm trying to say is, there are pros and cons either way. Having had my kids, I would never wish I didn't have them, and feel blessed I do. But in hind sight, if I had known what was going on with my health, I wouldn't have subjected them to a mom with this many problems. I also realize that is easy for me to say, as I do have them. So, I feel a little funny saying anything.

There are several women on here in your spot, who must have a better idea of how you are affected by this. I can only give my opinion as someone who did have kids and now know that I am not the only one who has suffered from this illness and understand the ripple effect it has on everyone I love and that love me.

I just wanted you to know I was thinking about you and am sorry you are being faced with such difficult decisions. Things that shouldn't have to be so difficult. I will be thinking of you and hope you can gain insight from some people here. morgan

[runningshoe]

This thread made me cry! There is so much loss with illness. But what I found today was a thread filled with compassion and understanding. That is what I gained today! Stacey, all who posted before me had such wonderful things to say that all I can add is that I am sending you healing thoughts and peace in the days ahead!

Lina

[StaceyYount]

Thank you all for your continued support!!

Yeaa I have seen that movie it is exactlyyyyy how i feel!

Thank you Morgan your words helped and Lina too!

[Rachel]

Hi Stacey,

I'm late getting to this topic, but I did want to let you know that you've been on my heart, and I've been thinking of you and praying for you. It is hard to go through life with dysautonomia. We all have hopes and dreams, and facing the possibility that they might not come to be is difficult. It hurts. Thanks for sharing what is going on. I hope that in time you and your husband will be able to make a decision and have peace. Hang in there.

Big hugs,

Rachel

[deucykub]

Hi, Stacey:

I'm late to this post, too, and I don't have much of value to add to the amazing posts you've already received. My thoughts and prayers are with you. I'm in a bit of pit myself the last few days. I usually bounce right back, but as options seem to disappear, my hope seems to dwindle.

Just know you are not alone, and we will - all of us - get through this and find joy and contentment again where we are.

Sending you an encouraging hug...