Jump to content

hilbiligrl

Members
  • Posts

    327
  • Joined

  • Last visited

Everything posted by hilbiligrl

  1. 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
  2. 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
  3. 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
  4. 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
  5. Klonipin for me is a wonder drug. I was on it for about 8 mths (2 years before diagnosis) and i never had an 'episiode' and i never got 'sick' with my 'unknown illness'. I was born with wravled nerves...... However, they had me on 1mg twice daily and I think that may have been too much for me. The doc decided to stop it suddenly, i didnt know any better at the time, so i stopped it abruptly too..... wish i could sue, cuz the withdrawal took a good year to get through, it was scary, i was direly sick and the depression that followed was a true eye opener for me to know what those who have depression go through, it was deep, long and dark. I can't take ssris and most meds anyways, they make me really sick..... I do plan to get back on klonopin or at least valium, because i had NO side efffects, except some memory loss, and well, i deal with that every day anyways now. Yes, it is very addictive, but im ok with it myself knowing i wuld be on it forever. Some docs who slowly taper patients off of klonopin do it with valium, suppose to make it easier and safer. anyways, i had a great experience and i'll be asking for it soon, but not ready yet....... good luck hilbiligrl
  6. 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
  7. Hey yall, Just wanted to say how amazing you guys are on here and wanted to say how deeply I am grateful for the posts, encouraging words, prayers and love. Hubby is hanging in there but with lots of mild chest pain that's like a stabbing pain in rib cage where the heart is like a knife or someone who has their fingers clenched softly around the heart. His appt for the pre op is tuesday at 8 am. They said that was the soonest anyone could get him in. His surgeon has practiced for 19 years and has good reviews on him and specializes in thoracic aortic aneurisms, so we feel much better about that. Im a little shocked they didnt get him in sooner, but they said keep him from picking up anything, stressing, straining, bending over and etc until the pre op. Hubbys heart doc nurse is so so so sweet and so helpful as she is helping to apply hubby for financial assistance in one area and im applying him for severeal others. We are calm for now, but worried senseless about him making it through surgery with a very diseased heart. However, the heart surgeon's nurse is very rude, shallow and not helpful at all... i talked to her several times yesterday and each time she was rash and rude... and trust me, i will say something or kindly write in a 'constructive criticism' note in the future as she has made this much worse as i insisted on questions and she insisted she wasn't going to ask the surgeon and she didnt know herself. She flat out refused to ask surgeon anything, so we have to wait till tues. I talked to the heart center 5 times yesterday, and still nothing informative really...... Im a little appalled. We are working ever so hard to get 'things in order'. Im exhausted and after hubby's appt on tues morning, i think i may be brave enough to ask my new doc for maybe a small number of xanax or something as i feel im gonna crash at any moment but fighting my own illness so darn hard to get through this next week, but im very afraid to ask for a benzo as in our area the docs have became so paranoid with anyone asking for a controlled substance, so many times those who need it direly, get refused..... but i feel like if i can't get some med help with the nerves, anxiety and panic that is a constant volcanic level inside me that i have no ability to control or to fight; i feel like im gonna come crashing down at any moment. Just wantede to thank everyone so much again. When all this calms down, i'll get to posting some feedback on other posts that i want to post on.... hoping everyone is doing ok on here..... May God bless each one of you all so much tennille
  8. ok.... scratch any good news... just got off phone with heart center... hubby has what she said is a huge anurism in his aorta... thoracic something or another and needs surgery asap.... and they said his ejection fraction is actually 20 %.... said he is at high risk for death during this surgery..... i just can't handle this.... im on the phone with the heart doc as we speak trying to find some financial help for surgery and a defibrilator..... oh god, im so freaked out and upset..... thanks everyone tennille
  9. Hello all.... sorry such a long lapse in posting an update on hubby and me. I have fallen deeply back into a 'potshole' or what i call 'weak spells' or 'severe episodes'. I was feeling some normalcy for once after a year and half to 2 years of being in a disabled state, until after the bad news about hubby's echo last week.... it seems the stress and worry perhaps has lashed out against me and now im back to not being able to barely move or talk or function. I have very very little memory of this week, even when i went to hubby's echo.... no memory for days and today is patchy. My cognitive ablilities were improving for the first time in a good year and half too since i started the doxepin for mcad, but now it's all to heck again. Im just in bad shape again, and so let down cuz i was starting to look up that I might have been getting better with mcad treatment.... so now i am unsure of the backlash.... is it nerves? I've always have had bad nerves since i was wee little. Anyways, hubbys doc appt went ok. His new heart doc doesnt want to change any meds or add to them until hubby starts 'feeling' symptoms from the heart failure... he's afraid he will make things worse or make things progress faster. The heart doc also re-done his echo and also did a cat scan of his heart to deterimine if he needs surgery on the aorta. That was monday, and we still havent gotten results. My mind is so blotchy... but the new heart doc for hubby was very nice, hubby liked him and so did I. He seemed to calm us both down that although this is bad and things dont look well for hubby, that even with an ejection fraction in the teens, he could still live for quiet a while. Although he doesnt understand how his heart went from 35-45% ejection fraction to a 15 in less than a year. If it proceeds to drop that quickly, things look grim. So for now, it's a waiting game, trying to get things in order and going about living... well, he is for the moment... im stuck in the bed again worried sick about him, kids and everything in between. I got results back from my own echo and holtor monitor as well (same heart doc group but i have a different heart doc).... echo was fine for me, only showing a small hole in the heart but nothing to worry about. Holtor monitor caught quiet a few tachycardia episodes were the heart rate was in the 140s. The nurse called yesterday and said it was due to excersise..... i specificaly wrote on my diary that i wasnt able to excersise and that the tachycardia was from just getting up, cooking, walking in the house... no straining, no nothing. Well, she didnt know what to say and basically she caught me at the wrong time and wrong frame of mind. I let her have it, I wasnt nice about it either, i didnt cuss or yell, but i really let the feelings and thoughts flow and told her to share my thoughts with my heart doc and told her to tell my heart doc she needed to learn to study up in the rare disease catagory and that she could also gain from a class or two in the compassion catagory.... and so on and so forth. Felt good and at this point, i dont feel a bit bad about being so hateful and really saying what i want to say as the nurse kept 'making excuses' for everthing i pointed out that wasnt right..... oh well. I still have vanderbilt next month. I know there was some things i wanted to answer and respond to, but my mind is so disoriented and lost these past few days that i just really can't remember... and the fact that i can't remember so much has me even more scared and freaked out. To sarah and macks mom and those who deal with mcad..... I've been trying so hard to see if i can sort out the symtpoms that seem to be improved from the doxepin from other symptoms. Is it possible even with mcad and the doxepin helping, that i relapse into my previous disable state? I don't even know if i asked that question right or not. I keep re-reading it but nothing is making sense to me. I was hoping the doxepin was doing the trick and I was even planning on taking over many of the business aspects of our towing business and getting back into the truck again. We were going to get me back to driving a truck and towing again at the very least, so that I will be in a better positiion to run the business if hubby goes down but now im wandering if it really is possible for me to really get better and be better. I better stop there, cuz im prob a mumbled jumbled talking mess right now. thanks everyone for the prayers.... hubby actually is feeling ok and not showing symptoms of heart failure.... hoping somehow the ejection fraction can improve again and that he can maintain. many healing blessings to you all tennille hilbiligrl
  10. Hi you guys.... and thanks so much for your replies.... I appreciate them so much. Keep in mind hubby is 56 and im 33 - together for 10 years now (if you havent read my 'about me'). About 1 year after we met and dating, he came down with gout and was bedridden for a good 3 mths... as he was bedridden, two blood clots formed and passed through the heart to the lungs causing the congestive heart failure. He was bad off but refused to go to the doc cuz he had not seen one since the very early 60s when he had rheumatic fever as a child. I finally mad him mad enough to finally go to the hospital and they admitted him to icu immediately. He's recovered well in my book, with just a few maintainance meds these 7 years. Yes, he gets echos each year to keep up with how the heart is doing. He hadn't had one in about a year till now and he has had no symptoms, except a jabbing pain a few times in the heart area that he describes as like a muscle pinch or electric shock in the heart or around it. It's happened alot lately, maybe 3-5 times in a few months. Other than that, no shortness of breath, fatigue, or sleeping probs (he had all those on the first go around of heart failure). He doesnt have fluid in the lungs that they can tell by listening. He does keep some mild issues from me cuz he knows how sick I am and he knows I fall to pieces when he's sick or is having complications. But he called me immediately after the doc called him at work.... in 7 years the doc has NEVER called him at work, they always call me first, this time, they called him first and at work, so it's really got us scared to see the doc be so serious. Yes, his heart doc appt is 8:00 first thing monday morning. I am normally on top of these medical things that go wrong, but this one has us both scratching our heads and confused. His doc acted like it was really serious and said it was really serious. I've never seen hubby worry or be in a fret or be upset..... till now. They took him off of coumadin, lanoxin and lasix about 2 and 1/2 years after the ICU incident.... he's still on coreg, lisinopril, lopid, folic acid, fish oil for the past about 5 years. He's always has good blood test results with no high cholesterol and things like that. His blood pressure and heart rate seem to remain stable.... although i've noticed his heart rate is higher than normal.... but he just had the flu shot (which i was angry when he told me he got it as i wasnt there to say no) and the pneumonia shot at the same time 3 weeks ago at the doc's..... then he got a mild case of the flu for what has seemed like a few weeks, but is feeling much much better and back to normal now. I was upset with his doc for telling him to get both shots at the same time.... to me, that's just too much for a heart patient like him, even if he has been doing good. thank you so much for the prayers, they mean so much I have to go back to my new integrative doc appt on monday at 10 right after his appointment at 8..... Mack's mom: I really think this doxepin is helping alot, i've been able to get out and about and go towing this past week. and the bedridden for me is starting to become less a little each day. Although I'm not by any means running around, as i still have to rest alot still and i still have many symptoms, but no where near as many nor bad. I've also noticed for the first time in a year and a half that i have no headache, i'ts been about a week and half and i've had only one or 2 small headaches that weren't even enough to take tylenol.... that is so weird. Can it be that the doxepin is working this good already? I haven't got to re-read much on the mcad since hubby's tests have been showing up bad this past week or so, but does mcad cause persistant headaches too? once again, thanks so much for the thoughts and prayers many blessings to you all, tennille
  11. Sorry I havent posted in a lil while but we keep getting bad news from my husbands doctor. He and I had an echo on the same day (week ago today) and I wasnt able to make his or mine. I always to go his. This time the said he had a leak in his aorta but they werent sure if it was the valve or in the aorta itself. Then today he got a phone call from the doc telling him they got the results of this echo and it shows that his ejection fraction is now 15% and they said it didn't look good and wanted him in with his heart specialist first thing monday morning (they called at 4 o clock on a friday to tell us this), on today's phone call they didnt mention any 'leak', just the EJ. My husband had congestive heart failure 7 years ago due to a pulmonary embolism but recovered well... his ejection fraction at that time was 11% and he was almost dead, but he responded to meds quickly and has done well for 7 years now, with ejection fractions of 45% yearly, but now its all of the sudden 15%.... he is not showing any symptoms at all. He and I are both worried and freaked out to the max that this means a certain death sentence.... and he NEVER worries... he's all to pieces, so I'm all to pieces as well. He doesn't have any medical insurance at all, and has ran his own towing business for 16 years and it's just me and him running the business.... but we are more worried that this means he may die really soon. (so now my illness had to go on the backburner for a bit.... ) Does anyone know of recovery from an ejection fraction this low? I don't know enough about it to know whether or not meds can bring something like this back up? thanks so much, tennille hilbiligrl
  12. dear tearose: I could feel the nightmare coming out of your post. I've been in a mental hospital (during a bad separation with my husband, we are reconciled now, doing well, thank the good Lord). But I went on my own accord to help with some suicidal and panic issues at hand. I could never imagine having to undergo what you just described, oh my goodness, i just don't see how you kept it together and how you are keeping it together. My heart hurts so very bad for you and I am so angered, so very angered at what you had to endure. I am so so very sorry. Something like that would most break me and shatter me to the core, yet you had to endure it. I don't even have words to say because I am so appalled. Reading your post was like reading something from centuries ago about torture. It makes me so sad and disturbed that this happened. I hope you sue the crap out of whoever is at fault.... gosh, ... im just at such a loss for words.... my mouth is on the floor and i don't think i will be able to pick it off the floor for a week! This is so unacceptable! Im still in shock...... You will be in my prayers...... keep strong. lots of love, goodness, serenity, and repairing hugs to you..... hilbiligrl
  13. sallyB ~ that's so amazing! What a small world we live in indeed! What area of kingsport did you live? I've only went out of state to live for one year many yearsa go, (went to Kernersville, NC) and even though the scenery was even more beautiful, Im a homebody at heart. There's no way i could move from home.... but i LOVE to travel, but don't ever get to. Wow.... that's so neat that you lived here in the same city as me! Dianne and everyone else ~ thank you! Im tickled to pieces, but Im still afraid to let my guard down....... let's hope he's a keeper! tennille hilbiligrl
  14. I always forget something.... on the CFS, after reading the article that Mack's mom posted, it made me see CFS from a different point of view, so I told the new doc, that the way it's described in those 2 articles, that it sounded very possible indeed. Amazing how the CFS, dys, pots, mcad all kinda overlap each other and that we can't find the instigator of all these....... also, I had a good thought..... maybe my new doc can teach his student docs about Dysautonomia and Pots and Mcad..... maybe having a trickle effect in knowledge that it exists and is possible..... cuz no one around here sure hasnt heard of them, including him... until i came along. Food for optimistic thought......
  15. Hey all! sorry i'm slacking on the replies, but as Mack's mom says, the doxepin definitely makes you more tired, ugh.... soooo slugish. He started me out on 25 mg and he said it might knock me out, so take it at night. Wellllll....... i tend to be paranoid with all meds... so i wanted to take it in the morning with no other meds and see how i done during the day, that way, if i had a freaky reaction or didn't do well, then i would be awake so I would know. I first time i took it, WOW..... nothing has ever knocked me out, other than anesthesia, like this med.... no sleeping med has ever put me to sleep or hardly made me sleepy (ive tried em all), so I was surprised this simple doxepin could give such a powerful punch. I am now taking it at night cuz it does make me quiet sedated, (i can fight it though, but since taking it at night now, i lay down after an hour or two and sleep till about 8 am). I think we might jump back to 10 or 20 mg though, when i go back in a week cuz it sure is making my nausea even worse.... im hoping this will pass. My doctor is a family doctor. I had learned about him about 3 mths ago when I went to a psychologist appt for social security disability, and the psychologist was so wonderful. He knew about dysautonomia but not POTS. When we realized i was one very complicated case, he told me to seek out Dr. Reid Blackwelder. As an integrative doctor, he looks at things from many perspectives that most docs don't even consider. Number one being: that those of us posing a weird case are telling the truth and that it's not a figment of our imagination. But, being integrative, he is into chinese stuff, yoga, meditation, as well as all conventional methods with meds, etc. He treats the mind AND body, not just the body.... i think that's how he put it. He also states 'that he thinks all doctors should start accepting less patients in order to spend more time with them.' He is 51, and he also is a professor at our local medical school (quillen college of medicine) in Johnson City, TN. His practice is in Kingsport, TN (you can google him and you'll see a pic of him on ETSU's website). He reminds me of a hippy.... mind kind of person! In our area, he is seemingly well known and well known for being a 'rare case doc' as well as a 'chronic pain specialist' and he has goten awards and articles on him, etc..... He doesn't accept patients anymore, but he will screen 'rare cases' to see if he can help them. I was able to call his office and talk to a nurse and explain breifly wat was going on with an 8 yr long mystery illness and what vanderbilt has stated. So, they allowed me to submit my case and called me 6 weeks later informing me that he agreed to take on my case. This past monday was my first appt with him and what a breath of fresh air! I just hope he doesn't give up on me/my case. Cuz he was really sweet, and attentive. I left him with websites and articles to read (not but a few so i didnt overwhelm him), the first one being about dysautonomia.... and a few others. I can't wait to see how he responds when i go back. BUT, he wants to be involved with vanderbilt and all other docs on my case for that matter. It's kinda funny, cuz the doc i fired is in his 'practice group', but he is at a different office. Mack's mom: I had read your articles that you had posted on here regarding CFS, and the hughes syndrome, etc. I gave him those two articles that you had posted. I am not sure if i would be a likely candidate for the hughes syndrome, but for years phlebotomists have told me i had really thick blood and many times they have had to go to bigger needles just to get blood drawn and still have problems. Seems like it happens alot when iv's and bloods are drawn, and i have alot of the symptoms described.... but those syptoms coincide with the dys, pots, mcad, connective tissue, mvp as well. I meant to reply to your post and say thank you for the enticing info articles, cuz i sure used it. Dr. blackwelder asked me if i had thought I might have CFS and i told him for years that I didn't think so.... I had always thought I was much more worse and way tooo many severe symptoms.... and I see fatigue as different from exhaustion. I.E. 'fatigue' that people think of, to me it seems to be after some sort of excersise, long day at work and 'fatigued' at the end of the day sorta thing.... but my 'fatigue' is not like that. I am in a constant state of phenominal exhaustion from nothing, around the clock... i can even 'feel' the exhaustion in my body while im sleeping! I had tried an exercise program in the past for about a year, but never improved in symptoms, only in physical strength. He also made the all time ' oh no, you didn't go there' statement for me..... 'if you are so exhausted, how did you get up and drive yourself here?'..... it always ticks me in the wrong way BUT when he asked this, I culd tell he was just trying to understand this wicked puzzle. He also wants me to get the 4 strip adrenal function test at our local health foods drugstore.... anyone else done this? It's like 170 bux here, so i have to wait till the funds come in. ( i had begged previous doc to test my adrenals for possible adrenal failure, but she said adrenal failure itself wasn't possible in my case, she also stated that there was no test that exists to actually test the adrenals????? i believed her at the time)... funny, it's one of the first things new doc wants to test. He did ask about a connection from the breast implants but i pointed out that this has been going on since feb of 2002 (my first episode landing me in the hospital with a bad case of mono... took 9 mths just to get back to basic functioning at home.) But the implants weren't done till just 2 and 1/2 years ago during a 'remission' period and well, my episodes have been well documented for a good 8 years now, so he eliminated that quickly. (i also previously asked for testing me for chemicals, toxins, and arsenic just to make sure it wasnt the implants (silicone shell but saline fill)... and to make sure no one was poisoning me (you never know)..... and all those tests were fine many months ago. He also wants me to pick up some 'Gaba' while in there, which is im guessing an herb maybe? We talked about how well i respond to klonopin, so he said to try that cuz it replaces Gaba if Im not producing enough of it? I guess we will see if it works somewhat like a benzo........ I never really thought i had a chance at Dr. Blackwelder accepting my case I better get, I gotta get to an echo and get set up for a holter monitor for the weekend. Thanks everyone! If i missed a question that was asked, i'll re-read and post again later after my echocardiogram. Im glad to know that doxepin is both and H1 and H2... i was worried, cuz i keep searching on the net and coming up with some articles saying its just an H1 and other saying its a strong H1 and H2. Even my pharmacist said he could only find it was an H1..... ??? I had a little spec of curiosity when i happened to read up on H3s and H4 drugs and that they can effect energy in the body, perhaps the ATP process..... not sure though..... but has me 'hmmmm'-ing ..... Mucho blessings!!! tennille hilbiligrl
  16. Hi all! I just wanted to share about my first appointment with my new doc. He is my new primary doc, (i had fired previous one of 10 years) and he (the new one) practices integrative methods/treatments, etc. He carries a reknown reputation for helping those with rare cases/diseases. Luck was on my side monday morning, cuz only 2 patients showed up for their appts with him, another person and myself. So, I got to spend almost 3 hours! with him talking about my symptoms, and my whole 'mystery illness'. I had already typed out a 3 page 'info packet' with a description of my illness and a list of symptoms (which happened to be over 50) and gave it to him after we talked for a few mins, but he didn't get a chance to really read it over since we were busy talking to each other. But he seemed to be grateful that I had brought it. In it i had mentioned my most troublesome symptoms and goals for them. I also had wrote what I suspected myself to be checked for which was : MCAD, connective tissue disorder, elhers danlos and the hughes syndrome. But again, he didn't get to read it. However, After discussing my symptoms for a long while, and after i briefly mentioned what Vanderbilt has said it being dysautonomia...... he responded warmly and seems really interested in what's gonig on. As i was speaking to him, he was thinking and writing things down and then he started out of nowhere (before i even mentioned it either) that he was suspecting connective tissue disorder, elhers danlos.... and then he looked at my bottle of zantac and zyrtec and he said 'looking at those two meds make me think mast cell activation disorder..... When he said those 3, I lit up like a xmas tree and he said 'oh, you know if them?' and i said yes, i had bee suspecting them as culprits too and he asked if i had the hypermobility and i was showing him my thumb supermobility and others before he could finish asking. Its seemed he picked up right off on many things. I also mentioned i wanted to be tested for hughes syndrome as well. (thanks to that article that was posted aobut a week ago). Im my 3 page info, i included links to the ndrf handbook on dys and also gave him links to a few other articles posted on here about the chronic fatigue, etc. He seemed excited to read it. I was just completely shocked that he knew abvout the connective tissue and the MCAD, but he didnt know about dysautonomia or pots. So, he said he would read into it and wanted to be apart of the vanderbilt exeperience and talk to Dr. Raj himself. So, goody that he insists to be involved and learn about it! He does agree that it seems to be a cns/ans damage/malfunction of some kind that he didn't think a cure would probably found. He said it was his feeling that is it a physical thing that most likely cant be fixed but hopefully the symptoms could be controlled somewhat. He is wanting to do a 4 test adrenal test and suggests some acupuncture just as a start. He did mention, for a try at anxiety, that I could try a herbal product called "gaba' which is suppose to add needed gaba in the brain to calm us down (like a benzo works on gaba receptors)..... and he also wanted me to try Doxepin, he seems to think its an H1 and H2, but i only think its an h1 for mcad. Hey macks mom: if the doxepin is only an H1, then should i not continue to take the H2 with it? He seemed to state that doxepin could take the place of the zantac and zyrtec. Does that make sense to you? Also, macks mom, or anyone, how do they test for mcad again? and the connective tissue disord? I am very excited as he made a statement that indeed i was a very challenging case to figure out. But, he will try his best and he is thankful for the research i could do and give to him, as he will be doing the same. So, for now, im to take the doxepin for a week or 2 and see him again and see if there's improvement and then, we will talk about what he has learned about DYS AND POTS. So, i could tell he believed me and it seems he's intrigued to figure this out, but again, stressted that he or other doctor probably may never be able to pinpoint which comes first, what causes which and so on and so forth. He listened well, spoke well, excellent eye contact and was very into 'leanring about my mystery case' and seems determined to figure this all out. So, so far, I am impressed. He and I were both impressed that we each knew about the mcad, ed, ctd..... So, right now, he's going through the 3 pages of info on me and reading up about DYS and POTS. Let's hope he keeps up the good work, as it seems I have a motivated doctor to look further than all the others. I guess i'll see how much he learns by time i see him again in less than 2 weeks. Has anyone been on doxepin for mcad? Yep, the appt went absolutely great! He seems to be very caring, understanding and very realistic and wanting to help. Let's hope that those strengths of his dont fade. many blessings, hibiligrl
  17. Hello all again, As im trying to rest up from some appts, i just HAD to at least leave a comment. The breathing issues that each of you describe, is EXACTLY one of my main to bothersome symptoms and always has been from day one. It is utter torture. I never could describe it correctly to any doc. I finally started describing it as if my diaphram muscles werent working on its own and i have to concentrate hard and continuous to keep the breathing from stopping perhaps. But, as mack's mom says it, it is no longer automatic. That would best describe it for me. That phrase was exactly how i described it to my new doc yesterday (ill be posting about that soon.... lol... im slooooooow these past few weeks). He said he had never heard a breathing problem described like that. I did have a pulmonary function test done a few years back, only for me to have passed it and i was never diagnosed with asthma, but given combivent inhaler. The inhaler doesnt work either. So i just have to pant, and try my best to keep breathing. Ugh... horrible. All these ideas, even the Hughes syndrome of the sticky blood, to the painter's mask, all seem very worthy of looking into. I have thought to myself for the past year, if wearing a breathing mask might would help. I think i may be trying it, as im trying anything. Why oh why can't they find the mechanism that causes this? So grateful for all the suggestion and articles on here, cuz i bookmark them all, jot them down and am taking them to the new doc when i see him again. He's looking into the sticky blood and hughes syndrome as well as others, but i'll post more on that when i post aobut my appt with him yesterday. Just letting you know im in the same boat.... i have to go out into the cold air alot this winter just to breathe halfway alright.... but like you all say 'it's just not right' and i can't quiet put my finger on it. The weakness/exhaustion and breathing have always been the main culprits for me since this all started years ago. hilbiligrl
  18. nowwhat, sara and issie..... you all have such kind hearts. I understand we have to abide by guidelines posted, but I can't remember if i had read the post that is in question.... if not, to: nowwat and others.... feel free pm what you has said on here. I took a day or two off to prepare for my new doc appt today with a rare disease/integrative doctor. It was nothing short of AWESOME. Many folks cancelled because of the snow and i got to spend 2 and 1/2 hours with him! I almost cried a time or two because he was so intuitive and empathetic... not to mention younger than my hubby... lol (totally joking). He was sweet, and excellent exerience. I have some thoughts on this post still going ..... but i seem to be having an 'attack'...... so im gonna totally lay down for a while and then get back on here to post to others and to reply to a few pm's. So, those i need to reply to, it may take a day or two, cuz gosh, im so slow! About my new integrative doc.... i think i will start a new thread later in the day, as i felt some of us would be entirely tickled. ok, ima bout to pass on out... ugh.... no sleep.... I have so much appreciate for each one of you on here, personally, I dont think anyone needs to apologize just for letting out the pains of the heart..... cuz sometimes, it can open right up to healing. Much love to you all tennille hilbiligrl
  19. Hello there! I have meant to respond to this many days earlier, and other posts, but my doc appts and generalized confusion and much need to lay flat and rest has been overwhelming. So glad that sallysblooms mentioned those 2 products, they sound promising, as i have had sever brain fog for almost 2 years now. I am now jotting them down, as i have a notebook of things that need to be tried/tested with my new integrative doc. I didn't really know what to suggest, but I wanted to let you know that tried so hard to stay in college and fight this disease i have (which was not diagnosed at the time). I missed lots of morning classes, was late to alot of them and missed others.... and had to reschedule many tests for the evenings, as morning time has never ever worked well with me. Luckily, starting college at the later age of 28, my friends were mostly my professors. Each of my professors knew i was battling something and knew i was sick alot. And since I was able to 'teach' myself and come in to take tests and performs labs, and keep my As. If it weren't for my professors who where so compassionate and understanding... i don't know how i would have gotten through and I am most sure I would not have been able to keep the As. Even some classes that 'required' attendance, they were able to use me as an exception, because my professors knew I bought other books as well as solutions manuels to help me 'home study' when i couldnt make it to lectures. Right before i had to quit school and work abruptly, i was getting sicker and sicker and my 2 semesters in 2009 where treacherous, being that, parking was horrible and I was having to walk 20 mins to school up and down hills. Then having to walk up and down many steps. OMG, just to get to one class, i would totally park my butt outside the door of the building and try like heck to rest, breath and be able to go in. Worse, came to worse and these classes, i just missed 70-80 percent of them and take tests and finals late. All professors were understanding, as i had doctor notes, doctor explanations, etc. At that time though, I was just starting to notice the brain fog. And i would try to take pills that boasted about improved cognitive focus, memory and concentration, but nothing helped and well, i had no idea what was going wrong, and nor did the docs. I got worse fast, and had to quit school (6 mths away from undergrad degree and i was already accpeted as an alternate to pharmacy school)..... then immediately i had to quick work after 4 years at cvs pharmacy as a tech. That was on oct 2009 and i've been bedridden (75-100%). I am hoping wat sally suggests will help, as I am going to mention this to my new integrative doc in 2 weeks and see if the can work for me. It is the brain fog and cognitive abilities that really bothers me alot. Just letting you know that I understand, I have no idea what would be helpful, but i understand and I hope someone finds some help for you soon. bountiful blessings each of your's ways hilbiligrl
  20. Oh my everyone, I am so amazed at the support here. This forum and all of yall are my refuge and my deliverance. Even if i havent been on here long, ever since i found this forum in sept, i have clung to it, as it is priceless to me. Thank you each so very much for your kindness and empathy and warm hugs, as it helps in a healing process. I am so sorry each of you and so many others of us have to endure this again and again. I could tell horror stories from many of my visits and different docs. It seems ever since Vanderbilt gave that er diagnosis of autonomic dysfunction, no one, including my family and friends and colleagues just can't bring themselves to fathom the possibility of it. It's completely ridiculous the bias and persecution we suffer through, especially those that we rely on and hope in for medical intervention. I knew this one cardiology practice was going to be a challenge, but i guess i allowed myself to let my guard for one moment and actually allowed myself to hope again in a doc, which is something i seem to repeat. I just didn't expect to be treated so nonchalant. I am resting up as we speak, but contending with a bad migraine since yesterday, which has delayed my reply and may thanks. now what~ you have no idea how much the compliment of good writing meant to me. I wall telling my pharmacist the other day that i really missed my intellect due to this disease.... i was in tears as i read your post mack's mom~ right now im on no meds. When i came back with a diagnosis, my long time family doc wouldnt budge. She was very offended and 'wrath like' when she found out that i had someone take me to vanderbilt because she refused to do nothing. When i came back with a diagnosis, she never once looked at it, just put it inside my chart. So, from sept till a month or so ago, my many phone calls for her to consult with vandy went ignored, and then i started faxing her different info i had found on the net. She refused to even ponder the fact. It was when i lost complete ability to swallow for over a week and was in a pretty life threatening state and hubby called her office and told her i need to be admitted to the hospital for observation and some type of intervention as I had no way of communicating anything other than small scribbles. She refused, said to go to the er if i wish, but she was not going to do anything about it. So, i dropped her like she was hot... which she wasn't. She was always condenscending and very controlling as a doc. I hid my breast aumentation and tummy tuck from her because she openly judged it from a religious point of view, yet it was none of her business.... she said YES it was ber business to know why i choose to dome something so rash. I am not shy therefore, i have no problem talking about my experience and reasons of getting the BA and TT done, but with her, i knew she would 'attack' me, so to speak.... so, end of her. I did by luck, i had to change gynocologists, as my long time one was going back to school (she was a nurse practitioner at the gyno office, and she was good). Anyways, waited 3 hours to see a new one, their office/practice/group was restructuring and it was a complicated day for them.... but the wait was worth it. The gyno was my age, my 35 though, as im 33. And she was an intergrative doc. She actually supports legalizing cannibas. And she KNEW about dysautonomia, so my appt with her lasted over an hour, as she was teaching a student (i never care if they teach students, they alwasy ask first, and i love be able to be apart of a teaching protocol).... but she talked about my symptoms and agreed and rationalized that vanderbilt's diagnosis was right on, but that she had no clue how to treat it. But she supported me. And when she saw I had plastic surgery, she was like 'wow, great job on the BA, who done it? looks awesome!'.... so then we chatted about that for a while. She was so down to earth and real, so glad i have one doc like that.... let's just hope i find some more like that. to mack's mom and sarah4 both~ i do very much suspect mcad with hyper pots. This is something i am insisting upon once i can get a doc to listen and want to recognize this disease and learn with me. Mack's mom... i had been meaning to reply to one of my previous posts, as to how does it feel for yal to have an anaphalactic episode and how does a doc test for this? I had told the heart doc i felt i was having either that, or mvp (as someone has mentioned), vasovagal episode or an autonomic attack. She ignored me of course. I do have the flushing that i have read about with the mcad.... so much. Its aweful. sallysblooms~ when i fired my long time doc, i submitted my case to an integrative doctor, his name is Reid Blackwelder. You can search him on the net from the city of kingsport, tn. He is well known, well respected in this are and has be awarded some awards and several articles have been written about him. He is also a professor at our local college of medicine. He preaches doctors should have much less patients and spend much more time with them. He is quiet out of the ordinary and someone before his time it seems. I have deep hopes, but im gonna keep my gaurd up, as now im getting to were i dont trust any doc any more. I am however, going to give him some information on Dys and POTS and also have him ready some things i want to be tested for : mcad, eds, connective tissue disorder, vasovagal episodes, mvp, etc..... He only accepts rare difficult cases, and it took him twice as long to screen my medical history, but i was finally accepted as his patient about 6 weeks ago i think... i totally cried to the nurse that called and she proceeded to say, she had never had that reaction before. My first appt with him is on monday.... early in the am, when i am at my utmost worst! But if i have to have someone to carry me in, i will have to just do it. I just hate it when i took weak to even talk, its so hard to try to talk to a doc when your speech muscle ability is totally impaired in some form or fashion. To all of yal...... You guys helped whip my 'psychee' back into shape, as im no longer dwelling on that horrible appt from yesterday and now trying to put together some facts, info, symptom list, etc about me for my new family doc. You never know, if he takes me seriously and accepts me as prob one of his biggest challenges, then maybe he can teach this desease to his students and perhaps a small trickle effect of knowledge may take place. Who knows? I sure hope so. I hate to allow things to upset me so much, but it seems where i was once so steadfast stronger than everyone, over the years, i feel me crumbling quickly. You guys help to keep the pieces together. So many thanks, tennille hilbiligrl
  21. I saw my new heart doc yesterday. There's not a whole lot to say about really, but I wanted to share it. She was the only female heart doc and i had such high hopes, to only be treated, yet again, like a nut case and like she could care less if I was on death's door, which often i feel I am. I had be lapsing into an aggressive episode the day before that was getting worse as each hour progressed. So, taking a shower and getting ready was a major feat (as it always is).... i was so out of breath, short of breath and severely weak. So, i was very symptomatic going to the appt. Basically, she came into the room with a very mightier than god 'air' about her. All she wanted to do was look straight into her computer the whole time i was there.... about 5-10 with her alone = no where near enough time to appropriately **** what's going on. To make a long story short, she says in these exact words "I don't agree with vanderbilt, as im sure you have researched Autonomic dysfunction and you should know that it and orthostatic intolerance only affects the elderly population..... it's possible, but not likely for you.' I was already fuming, i wanted to correct her so bad, but didnt. I thought anyone who knew slightly about this disease, knows that it affects mostly young women. I already knew at that point she was not well educated on the issue, nor did she wish to be. She wasn't good with eye contact, and she was very cold as if she didn't have time to deal with me, as all doctors seem to treat me. So... i was nice, despite having to hold my tongue, which was so hard. I discussed wiht her the catastrophic weakness which i know all to well is a different feeling than fatigue. And also discussed the shortness of breath 24/7 which has been so bothersome this past week that it has had me in a panic state so much.... really scary. And i discussed with her aobut urniating a good 32 times in only 12 hours (wasnt going to mention that, but she asked if i urinated frequently). She typed and typed away never discussing it, yet kept on insisting i need to be tested with my primary doc for other disorders. I had already told her twice that over 8 years i had alrady been tested for everything possibly known around here and seen many specialists with many repeated tests, bloodwork, etc. She then went on to ask if i was so sick: 'how did you manage to get plastic surgery done'. I was appalled. It took all i had to not get up and walk out. I managed it for one, i had no idea i had dysautonomia, and two, it was during a 'remission' time. This is one of the exact reasons why i fired previous fam doc, because she had issues with me getting plastic surgery and didn't agree with it. Basically to make a long story short, she didn't LISTEN. I gave her a 'report' of my bp and hr readings from home..... she didnt even look at them, or take them for that matter. My bp in their office was 139/79 at that time and my HR was 111. She also said my TTT was inconclusive and that if I had pots that it would have been without a shadow of a doubt have showed it on the TTT and that it wouldnt have resulted in a borderline test. My bp didnt start to drop until 45 mins was up and right before they were lying me down it was dropping yet they said 45 min is the cut off, so they wouldnt let me stay standing for even a sec longer to see if the bp continued to bottom out. She said she didn't see the need in me being seen aagain by a heart doc. Even after i told her that i had numerous palpiations daily and that it seemed i could provoke them by laying on my left side a certain way. I also informed her that the palpitations sometimes felt like bubbles or knuckles popping iinside the heart. When she said she didnt see any reason why i needed to come back, i got irate and insisted on an echo and holter monitor. She disagreed, but i told her i had the right to get them, then she took a moment of silence and ordered them and said she would only see me again if the tests turned out something noteworthy. I insisted the holter montitor longer than 24 hours, she wouldnt' budge..... so i insisted to be 'handed on over' to the 2 heart specs in her practice who were more familiar with vanderbilt and dr. Raj.... she refused and said it wasn't needed. She had no clue of Dr. Raj in the first place, cuz i had to spell it and she didn't even know his first name. I tried to get her to understand that im getting worse every day. 8 years of this getting worse and not one doctor out there has been wiling to probe deeper or even care to take more than 10-15 with me. And when test results show nothing, then they just shove me off and arent even the least bit caring. And to think I only told her about the symtoms they asked about or what i felt was due to the heart issues. I was pass out-ish the whole time, and even more so after she opened her mouth. I was in sheer disbelief and her comments and carelessness. I fought back tears, but when i got out, i cried all the way home, and went off to a room to be by myself most the night. I can't count how many docs this makes who have turned me away. I am so angry as to me, there should be a protocol taught to docs to offer more compassion and more probing into rare and challenging cases. The hope in this situation: my friend who works there in research came down to talk to me after the appt before i left. He knew i was pretty much losing it, angry, sad, hopeless, crying (i am sooooo not a cryer). He said he was very close buddies with one of the heart specs inside who deal with rare cases and as i said before, knows alot more about dys and pots than this heart doc i just saw and that this heart research spec is the only one of 2 who actually talks to Dr. Raj and that the one that i just saw, never has. So, he's already discussed me with this spec and he is now trying to go behind the scenes and get me in with him, or have him take over my case in their practice. (see, i had to see this 'generic' heart doc, in order to get 'inside' to the 2 research heart specialists..... and well, since she refused, i have to keep trying right? So.... big hopes for geting some help. I am so tired of the severity of my case being ignored and being treated like it's a mental thing. Im smarter than that. I KNOW my body and mind all to well. Now, im second guesssing myself and afraid once i get to Raj, he'll say the same, that im not typical of dys..... everyting i am screams it though. If doctors only knew how badly they affect those of us who pose challenges, when they treat us with such a 'mightier than thou' attitude and treat you with such insignificance. Sigh..... never keep trying right? many thanks to you all, hilbiligrl
  22. Hey all, thanks so much for the replies and the ones that keep coming too. It has helped bring down my panic about my teeth. I am most definitely going to insist i be screened/tested for ED as well as connective tissue disorders. My dentist appt has been rescheduled 3 times now.... the first time we had an ice storm that shut down most of the city for one day, so my dentist called and cancelled.... the 2nd time, was about 4 inches of snow and couldnt make it out of my driveway, so i rescheduled... then yesterday, a substation had an electrical fire and small area was without power most the day, included my dentist. I am beginning to think, maybe God is trying to intervene here and that i had better discuss the teeth/heart issue with my new primary doc on the 10th before rescheduling again. (hoping my new doc will be openminded to all this aobut me) I did go out and buy the act, proenamel and sonicare. Wow! The first brush and rinsing witt act and i could tell a huge difference! I didnt think it would make such a difference in one brushing/rinsing, but wow, wish i had realized this years ago, perhaps i wouldnt have to have so many teeth issues. Im hoping it will ward off a root canal on one of the teeth until they get me in again. My heart doc appt yesterday was crap and im going to start a new thread, as it was a bit absurd as to how i was treated.... as usual. thanks everyone.... and when i get back to my dentist, very very soon... i'll let yall know how it goes! I appreciate each and everyone of you! many blessings, hilbiligrl
  23. Hi Lissy! I was just thinking were the holes are in my teeth last night. It's weird, cuz each one has started from where the gum and teeth meet. When i was in high school, the dentist put a sealant in my teeth because he stated they were deeper and more rigid than others at the top, therefore, easier for cavities. So, one day i am eating and one of those sealed molars just fell apart and i see the decay on the inside, but all round that tooth theres was no sign of decay. I can't figure out how it formed! The other teeth are holes that seem to have came out of nowhere and since i always have teeth that seem to break off easy, im getting them filled asap.... but scared at the same time. I wish i had a valium to take right before. I will insist on the pump that you guys have mentioned for the numbing med. Do you guys know if it costs more? As, i have no dental and all this is out of pocket... ugh. thanks again! hilbiligrl
  24. thanks so much for all the replies. It always is reassuring when others have the same issues as I do, but at the same time, I hate hearing other people have to suffer the same ways I do too. I do think my teeth are a bit sensitive due to using rembrandt for quite a few years, cuz it's a mega whitening toothpaste and we all know they cause tooth sensitivity. It looks like I may have to sever my ties with Rembrandt and move on to the pronamel. I don't have a sonicare toothbrush, but i have used electric oral b's for years. It's weird cuz, last week i was just thinking about investing in a sonicare. Today, hopefully i'll be able to go out and my shopping list, lo and behold, has a sonicare and the ACT mouthwash and sensodyne toothpaste. Perhaps my enamel is indeed poor. I need to ask about the flouride as well. Oh my at the root canals i've had to have as well.... id rather give birth... as i hate, hate going to the dentist, i can't remain calm at all i hate it that bad! And you bet I will post updates about Dr. Raj.! As, I'm very excited to share my journey with yal on here. I am excited to go, yet very scared that even yet, he will look at me like im half crazy. I guess i've went so long with so many negative tests over and over, that im afraid he'll say 'you have too many symptoms' or perhaps that he might not understand how i describe these.... Yet being in the dark for 8 years, and years of researching on the net, and after discovering this site, everything in me and of me KNOWS that i have at the very least POTS, most def autonomic dysfunction. When i left vanderbilt that day, i thought they were the ones that were crazy cuz here i am headed for pharmacy school and I had never heard of this before, and i do tons of research. It wasn't until i came here and spent a couple months just reading hundreds of posts on here and finally, after all these years, here are people who are describing me from top to bottom, inside out. So many posts here echo me. Im interested also in my new doc.... his name is Dr. Reid Blackwelder and you can search for him in kingsport, tn area. I have even been able to watch some of his lectures at the medical school on the net. He's had some awards and articles wrote about him. I didn't think he would accept me as a patient once seeing my records and all my symptoms and clear tests... it took him 6 weeks to get back with me, when they initally told me it would take 2. After 3 weeks, i was sure he hadnt accepted me and was bummed cuz i knew he didnt accept patients anymore but would possibly consider very rare ones, i figured my chances were slim due to how unbelievable this disease is.... then 3 more weeks pass and i get a call...... I WAS SO SURPRISED, never expected it.... I was relieved that i was bawling on the phone to the nurse. She apologized it took that long, but she said i had a longer and more difficult case than others he has screened in the past. I have a lot of hope with him as he treats the whole person through all methods.... not only conventional but meditation, yoga, acupuncture, holistic, etc.... I'm glad he's willing to learn about this disease as we go along.... i just hope he's willing to include me upon treating me, as i know 'me' better than any doc out there. I'm afraid i'll have it out with the local heart docs here though. My hubbs who has had heart failure for 6 years, (he's 56, im 33... together for 10 years) was once seen for years by one of the 2 heart specs that know about the dysautonomia. (this is in a heart center, also called cardiovascular associates, and they have at the very min 20 or more heart docs in this one group) And this particular doc has an ego the size of a mountain. He was gun hoe on a surgery that hubby didnt need, and we had major issues with meds he prescribed (coreg at 100 mg a day??? and lipitor scare). Anyways, my hubbs and i got into with him on several occassions, to finally the point that hubby just won't go back. So... i already know im dealing with some rather close minded docs in that group, but that's my only option for heart docs that are local. And, when i had the TTT done a month or two ago by this heart group, they insisted that dysautonmia only affects the electrical activity in the heart and that it does nothing other than that.... i couldn't even get through to him all the symptoms, he just said my symptoms weren't plausible and had nothing to do with dys..... he insisted again, dys ONLY affects the heart and nothing else about the body..... sigh..... what we have to deal with. Looks like i'll have a gay ol time with them. So sorry i talk to much on here... i guess it's the fact that i have held on to so many conversations on here beacuze it has been my life string and still is... I lean on this forum like my life is on stake, and well, i guess it is! This forum is what has helped me get through the utter devastation of all this since i found it. Everyone here unknowingly has helped me get past that dark hopelessness that i had no mental capacity to get past and im so glad im not alone anymore. Oh my, i would prob be locked up in a mental ward right now if it wasn't for this forum, or worse. So, i guess im hoping to help others who where in the same hopeless state i was in. Yes, i will definitely let you guys know how all my appts go! hope yal have a good day! hilbiligrl
×
×
  • Create New...