Ejection Fraction Of 15% ??

[stacdliw]

Thanks for the time to update you and your husband's condition. I will continue to keep you and your husband in my thoughts and prayers!

[Lovebug]

Please just remember that we are all here for you! You are in our prayers as well as everything going on with your husband. I pray that God's hands will be with the surgeons and everything will turn out with the best possible outcome. Please let us know how things are going when you get a chance. I'm sure you will be extremely busy but we will be here! HUGS!

[MomtoGiuliana]

Thanks for the update; you are in my thoughts.

[hilbiligrl]

hello everyone,

Wow, has this been one scary rollercoaster ride. First, thank you all for well, just, everything. These past several days have been an endless nightmare. My mom, who was keeping the kids for me for a few days or so, ended up in the hospital for a a few days with pneumonia and a fever of 106. She's out now and doing good.

Hubbys surgeon is great, we like him. He has not set surgery date, as he wanted a heart cath done tomorrow to determine if any blockage exists in order to address it and also he says to give him a idea of what the pressures are in each chamber/ventricle/er-whatever are, to try to get an idea of the likelihood of chances of surviing or not. He cant fit in the surgery until 1 up to 2 weeks, but then that is right at my vanderbilt appt were we will have to drive down and stay overnight for it. So, the surgeon thinks he could work around that, perhaps do it when we get back, but he said he couldnst say for sure till the heart cath gets back. Oh, and it is open heart surgery, he will replace the aorta and build some valves that he wasnt born with (hubby has some bicuspid valve when it should be tricuspid).

We are having constant meltdowns and falling under the stress of everything cuz more bad stuff keep coming up each day and adding to it.... I had a MAJOR meltdown yesterday cuz were i was doing good with the DYS and MCAD, now im back to not being able to hardly walk or talk..... im fighting it so so so so hard but just am really caving in quiet deeply. I called my new fam doc for some help with nerves for a short period of time, but he wont be in until the 7th. They offered to set up an appt with one of the other docs, but i just dont feel comfortable having another doc i havent met to prescribe me a benzo..... so, i'll wait and see if i can get fit in on the 7th..... wow... im so not dealing with this well at all.

Im applying everywhere i can apply for financial assistance/etc for the surgery, cuz they also wanna put in a defibrilator/pacemaker too..... surgeon said somwhere around 140 thousand.... ugh.

I have to cut this short, as I gotta run... ok, run is not the word...... i gotta slowly walk and go try to help hubby for a while today and get some paperwork done.

thank you all so very very much for the thoughtgs and prayers,

tennille

[juliegee]

hello everyone,

Wow, has this been one scary rollercoaster ride. First, thank you all for well, just, everything. These past several days have been an endless nightmare. My mom, who was keeping the kids for me for a few days or so, ended up in the hospital for a a few days with pneumonia and a fever of 106. She's out now and doing good.

Hubbys surgeon is great, we like him. He has not set surgery date, as he wanted a heart cath done tomorrow to determine if any blockage exists in order to address it and also he says to give him a idea of what the pressures are in each chamber/ventricle/er-whatever are, to try to get an idea of the likelihood of chances of surviing or not. He cant fit in the surgery until 1 up to 2 weeks, but then that is right at my vanderbilt appt were we will have to drive down and stay overnight for it. So, the surgeon thinks he could work around that, perhaps do it when we get back, but he said he couldnst say for sure till the heart cath gets back. Oh, and it is open heart surgery, he will replace the aorta and build some valves that he wasnt born with (hubby has some bicuspid valve when it should be tricuspid).

We are having constant meltdowns and falling under the stress of everything cuz more bad stuff keep coming up each day and adding to it.... I had a MAJOR meltdown yesterday cuz were i was doing good with the DYS and MCAD, now im back to not being able to hardly walk or talk..... im fighting it so so so so hard but just am really caving in quiet deeply. I called my new fam doc for some help with nerves for a short period of time, but he wont be in until the 7th. They offered to set up an appt with one of the other docs, but i just dont feel comfortable having another doc i havent met to prescribe me a benzo..... so, i'll wait and see if i can get fit in on the 7th..... wow... im so not dealing with this well at all.

Im applying everywhere i can apply for financial assistance/etc for the surgery, cuz they also wanna put in a defibrilator/pacemaker too..... surgeon said somwhere around 140 thousand.... ugh.

I have to cut this short, as I gotta run... ok, run is not the word...... i gotta slowly walk and go try to help hubby for a while today and get some paperwork done.

thank you all so very very much for the thoughtgs and prayers,

tennille

Hey Tennille-

Thanks for taking the time to share your news. I just wanted to let you know that the heart cath (NBD) before the surgery is standard & will most definitely give your husband's surgeon a better idea of what he's getting into. I'm guessing your husband has aortic stenosis caused by a bicuspid valve, rather than a tricuspid. Most patients with this condition (most don't know they have it!) make it to around age 50 before they need things replaced. Your husband's lasted longer- he's a tough bird This is the same condition that Barbara Walters had surgery for this summer. ( BTW, she's having a special on Friday night at 10PM EST about open heart surgeries that might be very helpful for you & your husband to see.) My friend just had this same surgery due to aortic stenosis this past Christmas. She's doing great- about to start a cardiac rehab program.

Did your husband's cardiologist or surgeon link this condition to his previous heart symptoms? If so, I suspect he has a great chance of complete resolution once he's got the re-built aorta & new valve

I hate that you're feeling so badly. Could you call Vanderbilt & see if you can re-schedule your appt. for 2 months from now w/o having to go to the back of the line? That might ease things up for you....although I know you need their help badly.

Please know that your whole family is in my daily thoughts and prayers.

Hugs-

Julie

[Lovebug]

Hi Tennille!

I just wanted to offer you some words of encouragement for the next time you check in...we do so appreciate your updates. You say that ya'll are having major meltdowns and I just want to let you know that it is completely OK & normal for you to be feeling all these emotions. Let them out so that they aren't bottled inside. But please, please, please remember that you are never alone. I don't know how religious you are but at times of turmoil, I find comfort in some of God's words to me (& to you). I have a few for you to ponder and I hope they help you. Please share them with your husband:

John 16:33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

Isaiah 43:2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

Psalm 16:1 Keep me safe, my God, for in you I take refuge.

Matthew 7:7 Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.

Psalm 40:1 I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.

Last, this is a link to a song about how God keeps you. I hope it brings you peace b/c you and your husband are in God's hands:

[hilbiligrl]

Lovebug ~ thank you for the wonderful uplifting verses and words and song.... very nice and well appreciated. I think i needed to reply to you about mvp weeks ago, but i never could remember to...... I appreciate it and i had looked into the mvp thing and they describe me in their description..... i need to keep looking at that too....

Ok.... lots of stuff since last post.

Hubby had a heart cath done on last friday. We were suppose to go in (me that is) and talk to their financial aid dept and get some applications in and all that, so that we wouldnt have to be threatened with i wen hub went in for heart cath. WEEEEELLLLL...... i sat by the phone 2 days and no one called. Then we get to the appt.... hubbs was already crying cuz his friend kept saying they would take him straight into heart surgery right after so he was flipping out and crying..... then wen we got there the receptionist sent us to the finanicial aid office and she says 'todays procedure is 12 thousand some odd dollars, how much can you pay today?"...... i was pissed and hubbs got up and said, 'forget this, im not doing this'. HE WALKED OUT. I told the lady that this was supposed to be disscussed days earlier so this exact thing wouldnt happen. They had to get the director to come down, another lady with finiancing and one the heart cath nurse and come out to find hubby and saw him so enraged, but also crying and just not saying a word.

anyways, he finally agreed after they calmed him down after 2 hours and told him this and that...... heart cath went great, he has no blockages and his heart pressures are normal and his surgery is the 23rd.... the surgeon felt it would be ok to postpone it so that i can get to vandy on the 17. Surgeon also says hubbs chances of survival of open heart surgery is great! Surgeon is confident, very confident.... so we are too

Now.... me..... im all to ****..... havent asked for xanax yet, but so afraid to ask, so afraid.... cuz im telling ya, all docs here look at you like you are a pill head if you do. Hubb and I have had so so many meltdowns....

I have been up at 6 am every morning for weeks since this, towing with him, doctors appts, his and mine, so many, applications to submit, tows, phone calls, attorneys, wills, etc..... ITS BEEN ****. IM ALL TO **** MENTALLY, PHYSICALLY, EMOTIONALLY, SPIRITUALLY.

Since this, ive done so so so so much..... hubbs doesnt give a **** if im sick or not, he pushed me and pushed me and my anger is so intense at all this........ i needed to talk to him about how i was feeling and he just NEVER LISTENS, EVER. I direly needed him to talk to me, to show compassion on me, just once.... .and what does he do.... starts yealling at me cuz im so sick all the time. ?????????

How can you be there for someone to the point it ravages your already sick and weak body and mind, and not even feel an appreciation of it, and not even hear.... 'honey, how are you feeling'.... I NEVER GET THAT. But im always asking him.

I know im not in the right mindset to post right now, but im overwhelmed everywhere in my mind and body. God is nowhere it seems and each day for weeks now, has been nothing but bad things going wrong over and over and over. I am missing my direly needed appts cuz his docs are overbooking, therefore when we think we can get out in 2 hours, then we find ourselves there for 4 hours and THEY DONT EVEN TELL US THIS. So, while we are at these appts, im calling my appts to cancel them and being put back on a month later ......

This is too much and hubby doesnt care...... im offering ideas on how to make it better for he and I, but he refuses to take my advice.... advice that would allow some of this not to be on my shoulders... to no avail.

It's gotten so bad that my illness is nonexistant to him anymore......... and now, i find myself hopeless for me, for my illness...... and too much to deal with on his end. We have 12 appts to make in less than 2 weeks, and that's what its been like.... doc appt every day... tests every few days..... so on and so forth..... we are at a doc office literally 4 days out of their 5 a week. And, these docs dont have an OUNCE of compassion and it makes it so much worse.

In all honesty, i want to check into the mental ward, cuz no one is helping me stay on top of this.... and i dont know who or how to ask for help, i need it. Im getting so overwhelmed and panic and so many many many things at one time all the time that i end up vomitting alot, dirreaha on myself and im getting to were i cant walk again. And the soonest my doc can get me in is the 28th. I asked the surgeon the wrong question: I said 'cant i ask an ethical question" 'he said well yea i guess"... i asked him about if this was an appropriate time to ask my doc for nerve medication such as benzo..... well, he went OFF. Told me it was hogwash and he didnt believe people needed meds like that..... i was fuming already, cuz even though we like him, his bedside manner is rather rude and rash. His words made me feel like a pill seeker..... upset me even more.

I need some meds to help my illness and my nerves before this gets so bad that im in the hospital.... .i dont know what to do you guys.... it was so excited i was feeling better as a whole for once.... and now its all to h*ll, my nerves aer shot all to heck..... its all back, the whole sickness... i can feel it everywhere and i hate it . Every part of me is at a volcanic exploding level *** no way to calm down. Im such a strong woman, but not with this illness and not with all thats going on, hubby expects and demands me to keep up with EVERYTHING and do it all..... im doing it, but im paying the price and he doesnt care.... i keep saying, i gotta rest, i gotta stop, my body is shutting down..... no one will ilsten. Im tired..... macks mom... i watched the cfs video last week, wow, i mean.... wow..... thank you for that.... i do very much understand why some commit suicide.... i sincerely understand it. You get to a point that you aer so desperate for relief plus hopelessness and aloneness....... i so understand to want to stop it all.

Im wandering if my doc could add mestinon and maybe florinef now before vanderbilt? is that a good idea?

Im so angry.... i wanna take caer of myself, i wanna not feel ike this day in and day out.... its alwasy with me.... i feel the sickness and exhaustion in my sleep, all day long, its pure, pure ****.

I have prayed and read the bible since i was little, still do pray day and night, raised kiddies in church...... but my faith...... i just dont have any any more. The last 12 years of my life have been a repeat of bad things over and over. I have worked so hard to make my way, went to school, and raise my children, then i keep getting sick and sick......I just can't take no more, no more and i tell god that in sobbing screaming tears that i cant-take-no-more..... but im not lying here, the momenti have my breakdowns begging god to help in some way or let me know he's there and that i cant handle no more (ive spent hours laying in the fetal position on the floor screaming and crying at god).... then the next moment, a phone call saing something is wrong here or there, and so on and so forth..... these past 3-4 weeks have been torture. I tell god no more, but he keeps piling it on DAILY. I feel like a slave to my husband....... my husband has no ounce of compassion on me..... he's a great man and treats me good and all for the most part, but my god, he has no compassion or understanding of how sick i am. He did for a long while, until his heart stuff came up again. ON the other hand, i have been so compassionate, hugging him, talking to him in a reassuring voice, letting him know im here, its gonna be ok...... I have put him over my kids for 3 weeks just to help him get thorugh this and do all applying and paperwork and all the doctor calls, appts.... yet, i get nothing in return..... not one 'how are you feeling dear'... nothing.... im so mad, angry and hurt. I keep having migraines with blinding auroras... had a bad one the other night while driving and out of nowhere i lost 75% of my vision.... was with the kids.... had to pull over and have someone to come get us..... hate those.

Ugh, im wiped out yall....... pure crazyness going on in my head. so sick of no one understanding how very very sick we are......

oh and my old doc who i fired..... well, she got mad cuz i fired her.... so she sent me a REGISTERED LETTER in the mail for me to sign saying that she was firing me as patient and that i needed to find a new doc who would be willing to accept me as their responsibility. It was rather crude in nature....... the thing is, i already had found my new doc and since my husbands primary care doc works beside my old fired doc... well, i decided it would be best to just leave things unsaid so that there wouldnt be any issues and it not affect my hubbs care. She decided to be nasty about it.... my whole family said what she done was very distasteful and i am appalled and hurt with how she handled it, even though i know it is the correct way, she could have done it at a better time... she is well aware of hubbys open heart surgery. I want to respond with a kind letter, but just cant get my mind to come up with something appropriate and tactfull to put her in her place. And she's starting crap on facebook with some of my friends???????????? And here ive been quiet about it so that things wouldnt be a big mess........ sigh.

well.... i hope some of this makes sense..... my eyes and mind aernt working their best right now. I just know i need some intervention with my illness and nerves and i just dont know to get help..........

do any of you think it would be alright if i started mestinon before i went to vanderbilt on the 17th?

ok.... gosh, so sorry such crappy stuff.... its just this is the ONLY place that understands how crazy enough it is inside us with our diseases we have, but then on top of that all this crap lately, and on top of that a hubb that wont let me talk wen i need him nor is there any compassion.... so alone, so alone.... so tired, very very tired..... breaking down many times a day (and i just am not like that, cuz like i said, i normally am as strong as a mountain)....... at home in bed today, I pulled out my back when i towed a car yesterday.... walking with a cane slowly about the house today.

ladies/gents.... forgive me, please forgive me......but i needed to vent

much love to you all and thank you, each of you for the kind posts and love.... i read each and every one of them

tennille

[firewatcher]

(((((((((((((((((((Tenille))))))))))))))))))))))

[Sarah4444]

I'm so sorry things are so hard right now, Tennille. Is there anyone else who could help you manage this stuff at all, any relatives or friends? And don't forget about suicide hotlines. Your kids need you.

[MomtoGiuliana]

You are facing a lot of stresses. It sounds like it would help to have someone to talk to who can listen. I'm sorry you have been missing your appointments b/c you need medical support too. Hope you have some friends and family nearby who can help you through this difficult time. That is great news that the surgeon was so confident abou the surgery.

Hope you can get better rest, and that you are eating well and taking care of yourself.

[hilbiligrl]

firewatcher ~ you make me smile when you comment ..... and i wanted to say 'well said' on the klonipin post, but havent had the chance.....

sarah ~ Last night I put the suicide hotline at my bedside, as i was going into the paralyzed episodes that i have i had to lay down. But i felt like i needed something cuz i didnt trust myself, so i grabbed the number so it would be on hand beside my bed. Im also making another added appt with my therapist cuz i need some therapy. Looking at my med bottles and wanting to take them all got me scared.... an illness that has had catastrophic effects on my life, career, future, kids... etc.... how do doctors and God expect us to endure this disease(s)... i mean, these diseases are remarkably cruel to you and I.

Honestly, my family is helping with the kids, running them were they need to go... i missed my sons braces getting put on due to one of hubbs doc appts... i felt so guilty. So my family is busy with their own kids and mine... my mom and dad are the main ones helping but my sister and brother step in when my folks can't. My hubbs family... you can forget it on that. And well..... i just wanted my husband to STOP: take a breather, go somewhere and HEAR me..... but... nope.

I just now set my appt with my therapist, but she cant get to me for 2 weeks. I do have the option of seeing my new fam doc's partners in his practice, who all practice the way he does..... should i do that?

My main culprit is the severe weakness from head to toe, i need to be able to move and walk and talk to get through this and when im waking up sicker than i was wen i went to sleep and getting out of bed, my legs just collapse. When i start forcing them, they are jelly, or i cant get one in front of the other, then i get scared, start to speak and i slur. Inside my head is wow, so crazy right now..... and i feel the 'sick, rotting' feeling inside me all over, in my skin, bones, organs, everywhere. I just wonder if i could start on mestinon to see if it will help with energy. My tachycardia is still not treated, so getting in the shower and washing hair = heart rate of 166... and so on and so forth.

Im trying every option of calming down.... candles, soft light, quietness. a good movie at the end of the day...... but its not helping my illness or the nerves going wacky.

As i have spent the morning alone in bed... ive managed to calm down slightly, but i still feel all that firing going on in my body......

oh, and the heart center has been good to us and all, but again, why are 90% of docs and nurses have no compassion..... geez

having hope, i guess

I am so thankful for you guys listening to my dirt..... so sorry, i just didnt know who to 'go to'......

much much love,

tennille

[hilbiligrl]

momtoguiliana ~ yes, we are super happy that surgeon was very confident..... our worries are calming down. I have no close friends who would honestly take the time to come over and spend time with me. It's like, our generation doesnt seem to 'be there' when friends say they will, get what i mean. They mean well, but they have kids and ballgames and all that stuff. I do have my mom.... she is my anchor, but i just didnt want to upset her. But she's had the kids alot too. I have asked hubby to go away for a few days, shut the business down and allow us to go and chill and calm down and talk and get our frame of mind solid again..... but he wont until after the surgery.

Why is there no such thing of a support program for couples/families dealing with major things like this at heart centers? It would be nice.

anyway, i wanted to thank you momtoguiliana for your thoughts and support and kindness too

tennille

[firewatcher]

Tenille,

You know that you have a horrendous amount of stress on you. I think you need to regroup and take care of yourself. If your therapist can't see you, call a POTS friend. I have several from the forum that I call and vent to/dump on and they do the same to me. Maybe you should take the "do nothing" approach (it works for so many of our doctors! ) When faced with something that you just can't handle, do NOTHING...just breathe. The moment will pass and you will move on. So many of us just forget to breathe.

Be good to yourself.

Be well.

[Lovebug]

Hi Tennille,

I feel terrible that you are going through all this right now especially with this illness which you must deal with on a daily basis. It just makes everything you are going through that much harder. The best advice I can give you is as follows:

First, I think maybe now is a bad time to rely on your husband. He has so much on his mind and is fearing for his life and may be thinking irrational thoughts due to this fear. I notice you said you don't have any close friends that you can lean on so please continue doing your venting on here...with us. We ARE listening to you even though it's on the computer, and if we are all you've got right now, then go ahead and let us have it. Sometimes just writing down all your troubles helps and clicking that submit button so that we share your burden with you may help just a little bit more. You've stated in other posts that your husband has always been supportive so it sounds like he just has nothing to give right now. Be there for him as much as you can and know that when he is better, he will be there for you...again!

Second, I too get very angry with God. Sometimes my life seems so unfair. Other times I feel extremely blessed. But make no mistake that God sometimes just pisses me off, ya know? You have every right to feel that way and guess what? He wants you to share that with him. When you are angry with someone, you let them know. God is no exception. He wants to be our friend (on top of everything else) so talk to him like a friend. Just venting to him will sometimes help. I've often been angry at God b/c I've felt so alone and distant from Him. I would just ask (in tears) "WHERE ARE YOU?"...still, no answer. But I never stopped asking and I feel much closer to Him now. Keep seeking Him. The bible tells us "draw near to Him and he will draw near to you". I so hope you feel as though He hears b/c He really does. I hate to keep posting songs for you but below I've attached another one by Natalie Grant that talks about the false belief that we have thinking God will give us all the answers and make everything better, which isn't necessarily true. His promise to us is to carry us through the hard times, he won't abandon us...we WILL have trials, troubles, and heartaches BUT he is with us "holding" us the whole time. And that's the name of the song "Held". I hope it touches you.

Third, don't forget to take care of Yourself first! I always tell my patients that want to check out of the hospital AMA (against medical advice) to go take care of family or personal matters that "you can't take care of someone else if you can't take care of yourself". And that's so true. If you need to lay in the bed all day to recoup, then do just that. Maybe have your parents take your husband to the doctors appt and leave the kids at home with you (since they are older)...just a suggestion..?

Fourth, don't hesitate to talk with your doctors about the need for Xanax or other meds. If they know what you are going through right now, they should have no problem giving you what you need. It's what they are there for. I can't answer about the other meds b/c I've never taken them but maybe some of the others on here can.

Fifth, make lists. Maybe you will feel better and have somewhat of a sense of accomplishment if you wake up each day and can cross only ONE thing off your list. I'm obsessive compulsive and lists help me tremendously. It can also help you if you have memory issues. Sometimes I just brainstorm and jot down everything important to get done. Then I actually make a nice, neat, numbered list with most important things first. It feels so good when I can complete a list or an item on the list.

Whatever happens just know that we care about you and we are all here for you. I pray for brighter days for you in the very near future. Being realistic, it will take your body a while to adjust to all the stress you are going through so let the goal be to feel a little better each day with some relapses being inevitable. And this period of healing may not even begin until after your husbands surgery. Hopefully you can count on your family/friends to assist where needed.

[juliegee]

Oh Honey,

Know how much we care & how we hurt for you. I get that it feels like too much right now. It is.

I, too, have a hard time finding God when I need Him most. After a recent rash of awful doctor's visits, learning that I had heart failure, possible fatal blood clotting problems, possible cancer, etc; I was devastated. After a day paralyzed on the sofa, I finally got up the oomph to go for a slow run, my Ipod keeping the beat with my familiar rock & roll. My legs felt heavy & I was so full of fear and doubt. Is it OK to run? Will this hurt or help me? I felt like I was running for my very life, when a new song popped up on my Ipod: "Be not afraid. I go before you always. Come follow me & I will give you rest...." Tears poured down my face. I had given up on God, but he hadn't given up on me. Through an accidentally uploaded song, HE spoke to me... I hope you can hear Him in quiet moments or even through us- all of the love that we have for you.

I hate that you're still trying to keep the business going, but totally understand why you have to. I hate that you are so sick when your dear husband is even more so. I hate that you have to keep on dancing to your kid's schedules. I hate that your husband's health insurance lapsed when he needed it most. I hate that your doctors are hurting and not helping you...

On the other hand, I'm thrilled that your husband's surgery is scheduled. The surgeon is wonderful, optimistic, and confident that your husband will make a full recovery!!! I'm thrilled that you will get to go to Vanderbilt before his surgery!!! I'm especially thrilled that your family is so supportive during this trying time... Glimmers of grace peaking through the dark clouds

A quick side note: Be sure that the 12 grand is the discounted price, the price that an insured patient would pay. Hospitals sometimes charge a different rate for uninsured patients. Be certain this is the price you (with insurance) would pay. It is WRONG to penalize the uninsured by charging a higher price.

Just breath, honey, one tiny baby step at a time. Know that you are not alone. We love and care for you, Tennille. You can do this. You can get through this. Take the very best care of yourself & your hubby that you can.

Gentle Hugs-

Julie

[Sallysblooms]

God doesn't promise we will all be healthy, but he is always with us. I don't ever get angry. I just ask for direction...to doctors, supplements etc. I just want to be led to the right places for help. I have not been let down.

I am so sorry about how you are feeling. I am sorry your husband is ill, prayers for you both.

[hilbiligrl]

Hey you all.... I just wanted to say a big THANK YOU SO MUCH for all the advice, comments, encouragment and everything. It helped knowing others get mad at God too.... I sometimes fight with him, like he's right here and im having a loud fussing conversation with him kinda thing. Not sure what's lifted, but today has been so peaceful and i so needed it you guys. I've been home in bed for 2 days, today i moved around a bit and done just a few things, but im still realy exhausted and weak. Hubby is in a brighter mood thankfully, but still, I don't think my illness will be on his mind for many months, but i will undersstand.

I did make a appt with my doc for tom (not my new fam doc, but a partner of his)... this time im not going to be too chicken to go. I am gonna insist to be tried on mestinon to see if i can get some energy.... im missing so much stuff with my kids and it's killing me! The guilt is tremendous.

So.... let's hope for a better tomorrow.

Thank you for all your ears, and responses... i.... just.... reallly needed them and it helped to know its ok that i flip out. I just get scared sometimes cuz i get so desperate for relief of so much agony and stress and sickness, and instinct kinda takes over yet turns my thoughts irrational.

I go to vanderbilt next week on the 17th, so i will let you guys knows what they say and do!

Man, im so glad this forum is here.... such a safe haven where here is the only world that truly understands how cruel these disease we have are.

many thanks and mucho love to each of you!

tennille

[MomtoGiuliana]

I understand the feelings of guilt. You can only do so much, and you have a lot on you, right now. That is great that your mom can help you with the kids right now. When I was really sick with POTS the image of the parent placing the oxygen mask on her own face before placing it on her child's was what I tried to keep in my mind (you know the directions given regarding what to do in event of loss of cabin pressure on an airplane...)--a caregiver cannot give of herself until she has taken care of her basic needs. You must take care of yourself.

Let us know how things go at Vanderbilt.

We're here for you when you need to vent. As others have said, remember to breathe.

In response to you post to me--you're welcome. I can never forget how difficult it was for me when I was desperately sick with POTS and I hope I can offer comfort to those experiencing it now. It can get better!

[Lovebug]

It's great to hear you had a better day. And I get angry with God alot. I think he understands. Afterall, he made us. May I recommend the book "The Shack"...it's given me an entirely different perspective on God and my relationship with Him. It's a little strange (unconventional) but opens up alot & I feel more free in how I can communicate with Him.

Keep hanging in there!