erikainorlando

You all arfe so great. Thank you for your encouraging words. Jan - what a great message. Thank you. My ex-husband goes to some events and practices but he thinks I should do my share. He thinks I am bing lazy. He by the way has taken the kids all of 10 dys all year. And he is thousands of dollars behind in child support payments. So I know better than to get offended at his statements but I am already struggling with my own limitations... Thanks for all your kind words....and as you know....i usually always did my share and then some...but I can't...it is nice to have a spot where you understand that it isn't that I could just push myself a little harder. Erika

Are they better than Vanderbilt? I am scheduled for Vanderbilt because of my insurance...butI can't get in until April. Thanks!! Erika

OK.. My daughter is a cheer leader. Go girls!! My son plays baseball. I have POTS and can't work. I can only go for a few hours and then have to lay flat for a few hours...intermittent very sick episodes. Anyway, my daugther had a game tonite. My son had baseball practice. I took my daughter to the game (1 hour away) and told my ex-husband that I couldn't bring my son then to baseball for 1 1/2 hour practice. In fact I was already so guilty for not staying at the game with my daughter. My ex-husband said "well...it is part of being a parent Erika!!". I can't do it...I get way too sick...am I depreving my kids? I mean I know I am but I don't know how else to raise them. I get frightened that they would be better off with a healthy mom...or someone else. All I can do is rides sometimes...most times I ca't stay at a baseball game...or a football game..even when I stay for an hour I goo home and am so ill I think I am going to the hospital. I don't know what to do...I love my kids...but I can't do much more than a few rides to extra-curricular activies a week...you know sometimes I can' barely stand... Anyone relate...I know I have mentioned this before here but I need another pep talk. Erika

I am in the category of I can go in the morning. I do not feel good...joints hurt etc...but my body is happy that it has been laying flat for 8+ hours.. I can go until around noon. Not tht I feel good...but then the real sick e5pisodes start around 1 or 2..............I am always down from about 2 - 5. Then if I have been flat for 3 - 4 hours I can go again..for a while..but sick and weak...slow.. Erika

I have been adjusting to my recent breakup (not without some tears...ok a lot of tears) but I invited a good friend over for dinner tonite. He has been a great friend for years. I have told him how sick I have been. But I am not sure anyone besides you all get it anyway... So I had an appointment this morning and then I layed down and tried to go to the store in the late afternoon to get a few things...so by that time I was ill...very ill...my "sick spells". So then I reclined for about an hour...and he called and said he was on his way...so I hop up and start trying to get dinner...I cna't even see straight during dinner....can barely function.. I just get too embarrassed to say I can't...I don't want to seem like a pain. I was sweating so bad and in weird spots by the time dinner was over. I cannot even pretend for a night that I am like other people...if I say something too...I feel like a complainer...or they say let's reschedule but the truth is I ALWAYS FEEL SICK...sometimes better sometimes a lot worse...but ALWAYS sick... Thanks for letting me vent.... Erika

Boy - I am on beta blockers but I keep loosing weight...I am now down to 101 again...haven't been this thin since before bb's. I think I have had some stress lately...so all the weight I had gained...I was up to 109 and feeling positively fat is gone. I don't think it is any blessing to be so thin...I look like a scarecrow. Good luck. Erika

I have chest pain a lot!! I have irregular heart beat a lot as well. I have been in ventricual bigeminy...I have it all and many times feel like I ill die. But...when I rest...it can all get better...my cardio says not to worry...I usually let it go...I have always had bad EKG's after being upright and then in the morning it is normal again...so that is my story... I don't know if that relates...it is a bad day for me...but wanted to add my 2 cents... Erika

Hi. Just wanted to say welcome. I am a mom too. My kids are 15 and 11. I am 46. I got POTS 1 year ago after a virus. I can'timagine how hard it would be with a 5 year old. Well...yes I can...I was very ill when my kids were young...so yes..I remember. Anyway..no words of wisdom on Dr. Grubb...or any medical magical cure. I find the more exercise I try to do the more I can do...sometimes just reclining seems to make it even worse. but it is a balance. sometimes if I try to do too much I pay so dearly afterwards...I feel like I will be in the ER. I think we find our way. My tricks have been pacing myself, drinking lots and lots, salt, and beta blockers...and prayer.. Erika

I was so sick prior to my diagnosis that I really pushed to get a TTT and all testing as fast as possible. I didn't think I had POTS...I just had no idea what was wrong...but I knew that a wrong diagnosis meant that I wouldn't get well becasue they can't help with the wrong diagnosis. Good luck. Erika

Hi. Welcom! Just wanted to add htat POTS is not treated with a high priority here in the US either!! But we do have each other here! Sorry to hear of the loss of your baby. I had 3 miscarraiges myself. It seems any stress on the body doesn't seem to help POTS or any other autoimmune disorder. I had Guiilain Barre Syndrome in 2001 and almost died. I recovered for the most part. Then last year I had been underr terrile stress, got a virus and got POTS...it is as if my nervous system just sort of short circuts. it is too bad that thyey won't guve you beta blockers...thye saved my life...I can do so much more on them. Exercise is my friend and I try to exercise and push myself to do as much "normal life" stuff as possible. I hate feeling so sick afterwards but I know I have to try to retrain my body....this at least helps me feel as something might help!! Anyhway.welcome. I am Dutch by the way and spent 6 months in Amsterdam as a kid! Erika

I am glad you are feeing betterr. Yes...I do think that all these autonomic problems do make us gun shy to go to the docs. I really get afraid they will think I am crazy. What a shame right? I feel so ill most of the time...feel like I am dying...but I am burned out on docs...so I just won't go and/or complain to them. Erika

I do a little helping out at a place that has recently had a resident come down with H1N1...or so they think. I am hesitant to go back until they find out for sure...not knowing how this would affect me with my over active immune system. The director seems to act as if I am a baby..but I am really concerned given my post-viral history...anyonen think I am over reacting? Thanks. Erika

Thank you! Thank you! I know it is all in our attitude..andyet I forget so often. Erika

I needed to read this post!! I have recently borken up with someone and I really feel very old and defective and scared as I keep getting wierd things. I can't fake it!! I have to even tell my friends when we go to dinner etc as I sometimes get so sick I can't talk...I say..."you talk for a while". I think acceptance cures a lot. We are not defective and we are loveable and we have a lot to give..even if we can't make it to the beach...or sometimes even to dinner. I know for myself that I need to love and accept myself for where I am...I am not good at apologizing for being ioll anymore...it just makes me feel too bad..I am trying to now say I have a condition..and somedays are better than others and love always finds a way............. Thanks for posting. Erika

Hi Thankful... I thought I would never have kids myself. I had 3 miscarraiges...terrible pain. Thought I wouldn't get thru it..but I have 2 kids...wonderful kids who keep me going. I thought I would never wlk again after a very severe bout of Guillain Barre. I walk and even snow ski'd 2 years ago. I thought I would recently when my boyfriend told me he was going to Utah and didn't know what he was doing when he gets back in March...I feel abandoned sick and rejected. I replay the relationship etc,, and my failings..I am full of fear over my health and being alone...BUT I remember that life is long and sometimes we just have to hang in there...love pray forgive and remember they told me I'd die in 2001...but I am still here complaining about another difficulty. We don't know what is around the corner..I am sending you lots of love. Erika

I have to say this is the only place in the free world tht I can whine about this and get support. Sometimes I just need to whineand whine and cry and cry. And then I move on.. Even my own mother who knows how sick I am asked if I wanted to go out to eat after my son's baseball game on Saturday...I felt so irritated that she can't seem to get it. If I can make part of the game I most vertainy will not make it out to eat........... Most folks cannot wrap their heads around the fact that we can't and there is no fix...only our attitudes..like firewatcher said...but love and support helps..understanding is the ultimate...thank you Erika

Great topic! I am not homebound...but am home a lot as they say!! Sometimes I am just way too sick to even talk. I have two great kids. I can't imagine how lonely I would be without them. BUT I have friends that I talk with on the phone a lot!! I recently broke up withmy boyfriend...basically because I was so in love with him and he was still so confused on what he was doing with his life and how I fit in...and I do miss the company but honestly...I don't miss being made to feel less than...so I'll be a lone and find another way...you will too. Can you take any online classes? I am very goal oriented..thiks makes me feel like I am still accomplishing something. Erika

How do I register? At that website? Thanks!

Many years ago...when I was young, I took Xanax for anxiety. It helped with that but it was so hard to get off I neverr took it again. I do sometimes take pain meds for the achey..horrlbe stuff. Or lay down and drink lots or both... Good luck and I am so glad to see you posting more. I am thinking you are feeling a little better?? I hope so! Erika

I was helping (doing a little work on my masters)..I only help a few hours in the morning when I can. So today I had something to do in the am and so I didn't arrive until 10:30. At noon...I am really ready to leave andlay down!! SO I start heading for the door...and the woman who works there says ...aren't you staying..(like I am not putting the hours in needed). She says "you couln't work these hours if you worked here"...well, da....I don't work there!! I can't work there or anywhere!! I can't stand up!! I can't do much...so if I get there late....I still have to leave becasue my body doesn't care how much I have done at yoru facility....it just doesn't want to be upright mor than 3-4 hours tops!!! HELP!! Why don't they get it?? DO they think I am faking? SO sick now...I like to push myself becasue I think it will help in the long run...but I am running on empty now.. Erika

Honestly, after I take the BB my hr gets better and I feel better for a while. I don't do that bad in the morning. For me it is that after being upright and moving around for a few hours I get very ill feeling. The afternoon hours from about 1 - 4 are very very bad...then if I rest, I can go again for a while...then I am ill again. Night time when I lay down to go to sleep is no picnic either...my heart feels like a bag of worms are in it...flippingnand flopping. Anyway...that is my experience. Erika

My feet swell whenever I am on them too long. They also turn purple and red. My kids noticed this way back last December before I was first diagnosed. They would get sooo swollen. Most days it is better than back then but I have notiiced that if I try to push it (which I always do lately) they swell!! I am sure it is the circulation thing. Good luck!! Erika

OK... Yesterday I tried Zoloft for the first time. I only took 10mg...but I did not feel well. I thought it was the heat...but as I feel similiar today I am questioning and suspect...I feel like I will die...buring in my chest...evenmore unwell than usual. Nausiated from the buring in my chest. I looked up the side effects and don't see this as one.. I seem to do very poorly on anti-depressents.. Maybe tomorrow I will not take it and see if this is just a new symptom...any ideas would be greatly apprecited. Erika

What an interesting thread. AND I was speaking with a friend about this this evening. It was such a horrible time. I got sick last Sept. but because they always took my hr sitting they thought it king of high...but alas..no help..altho I couldn't function. HR was 188 standing finally when someone got onto it!! I thought I was going crazy...TTT in March confirmed POTS. BUT now...do we have a fix please???? I want to add tho that with Guillain Barre...even when I couldn't stand by myself or feel my feet...my PCP told me I was dehydrated. I insisted on going to the hospital...9 days later I was on life support..go figure Erika

I went to my son's baseball game....on top of being so emotionally toiled lately(crying never helps me). ANyway...it was 95 degress...we sat in the sun...I had to go to the bathroom which was about 1/2 mile away...the bathroom was hot, smelly, the air was stagnant. I got so sick. Then I had volunteered to do a group (I was working my my masters in counseling psych when I got sick). The men in the group went on and on...I kept thinking, I am going to throw up and then pass out and then have a stroke. I barely pulled myself in the door. Why can't I force my body to do this stuff..boy do I feel awful...I know the other lady at the grooup place must have thought I was lazy...I bolted right after the group...didn't think I could drive home...I can want to do things...I can even picture myself doing them..but then...well..my body won't pull it off. Just venting... Erika