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erikainorlando

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Everything posted by erikainorlando

  1. I hate to say it but that is my life...all except for the nausea. But I get diahrea. Add to all the other feeling so weak and wore out. My hbeart goes out to you. I have two kids and it is very difficult managing them. I haven't found the solution yet...but when I do I will share it Good luck. Erika
  2. this girl goes to my daughter's high school..perhaps you've see the story. http://www.parentdish.com/2009/12/17/teen-...ncid=webmaildl4 someone else learning to live with disability
  3. Michelle, I am so sorry. I read that it is another neurological idsease...is this correct? Do they think there is any coorelation? Sending you prayers for healing.....keep the faith girlfriend... Erika
  4. People are thoughtless...unless they have experienced something (altho it is no exccuse)..however the thing that really irritates me are the people that DO use their mothers handicapped parking badges and have absolutaely no regard for the fact that someone who is handicapped will not be able to park there. Moreover the folks that park in the handicapped spot with NO badge claiming there are no other spots and they will just be a minute etc.. Now I have been known to approach them myself!!
  5. Elena11 - you really hit the nail on the head. I don't push...if I am hurrying or stressed I get very symptomatic very easily!
  6. I like baths because I don't have to stand!!! I like that a lot. On days I have to wash my hair I shower...that is always an ordeal!! Erika
  7. Tachy - I have posted before that I have vasomotor rhinitis...self diagnosed btw!! However, it was my only real tangible symptom before I realized that my hr was so high. Both came on at the same time after the virus that seemed to kick this all off. I was tested for allergy after allergy...many months after my POTS diagnosis an great ENT finally said the blood vessels in my nose were probably affected from wild swings in hr or bp... No sinus infection here...nothing like it..just autonomic dys,,now I have no words of wisdom just identification. After sitting my nose is usually better... Steriods did work but obviously not a long term solution. Erika
  8. I don't really know how to do a poll.....but I am curious...if we assume we sleep 8 hours a nite, how many of the remaining 16 can you be up and doing things? And what does it looks like? For me, I am good in the mornings (not always tho)...can be moving for 3-4 hours...then I have to lay down for several hours..then I may be able to get back upright after that so for me I probably have about 6 - 7 hours a day that I can be somewhat functional. The rest of the hours are spent reclining and many times not feeling well at all. Just wondering Erika
  9. Thanks so much you guys..It is a real life saver to be ablt to talk to others who can empathise with the frustrations of just basic living with POTS. I am not sure how I would make it if I didn't have a place to express the mental challenges of dealing with this physical illness. Brye - can't even imagine having to change diapers with POTS..you rock!
  10. Erik - do you have OI or POTS? or both? Exercise seems to help for sure...but not overnite and I always get maliase from any activity. Yesterday was a great day for me as I did NOTHING.....had a stomach ache so I sat on the couch all day. Felt better than usual with POTS stuff. But I know that is not the cure ...it is like cheating on your diet...the instantanious reward..i.e. sitting doing nothing is doing nothing for me even if I feel better in the short run. Erika
  11. Sorry. But you all know what I go through and I am certainly short on folks who can comprehend my illness let alone relate. I had to bring my son to the store to get a game for a party this afternoon....I feel fortunate that I can usually do an errand. But we are at the game store, the young man greets us and stands at the door. While he is standing there we are waiting in line (I just do gift cards)...I wait...standing..standing..finally I say to the other guy waiting on folks "can't the other guy help us rather than letting us all stand here?"...you all know how irritable I get when I have to stand... now I do realize this is my problem and I need to understand that most folks don't get as ill as me when I stand..so I feel a little bad for being impatient. Now on to CVS to get some water (i say to myself that I will not get impatient). I can't find the water...I ask (standing again)..they don't know where it is "look down aisle 25 bla bla bla" finally a young man does know but doesn't show me then I get someone to show me...and they walk away. The water is heavy (24 bottles). My 11 year old son knows I can't carry it so he tries. I am furious again when we get back to the cashier..i say something about customer service. I am probably going to be kicked out of central Florida for being such a crab... I just can't stand well.. I know "get a wheelchair" but I don't want to and probably don't even need one most of the time..I just need to get in and out. I know that most folks can't understand that I don't have just a couple more minutes to stand in line as I may just keel over. Life is just way harder for me (us)....and some things I just have to do...I am a single mom..then I get upset with myself for getting irritable. I am working on this but still fall way short at times. Anyone else? I know my frustratin is at my own limitations as much as it is at anyone else really. Thanks alll. Erika
  12. Thanks everyone! I always know where to come for imformatin. Abbrigs - I sent you a PM...but how exactly did the ablation help? What are your symptoms now? My EP says he leaves the sinus node alone with POTS pateints...I assume and am waiting to talk to him more that he is just focusing on the atrial tachycardia. Erika
  13. Yes. I have gotten the veins too! But my eyes get very dark underneath when I have been up upright too long. Erika
  14. thanks guys! I really haven't had that many anxiety feelings...nor have I had too many doc's tell me it is anxiety...but all the same..when I hear my own complaints I would point to anxiety if I didn't know better. But having had anxiety in the past..one can certainly tell the difference of a heart problem and anxiety ... I guess we just have to fight to be heard at times..which is really a shame as many many times I feel way too sick to fight to be heard......and believed. Thanks for you all! Erika
  15. It depends...on many factors so I don't always go into it. Sometimes it just isn't worth the energy. But I am not a private person so it doesn't bother me to tell people for the most part...but they really don't understand. I do get embarrassed tho at the being winded, can't stand, have to prop feet up, sweating, got to go home...I sm so ill. But I think we find our way. However, it at the moment it is what is...and there is no shame in not being well. Erika
  16. The last couple of days...well..today I feel awful. If I didn't know it was POTS, I would be running to the hospital. For sure! My chest hurts, difficulty breathing, dizzy, feel like I am dying....can feel heart going crazy. Now, I know if I was a doctor at the ER I would say anxiety....it is funny isn't it...afraid to even say how awful I feel because even I know it sound like anxiety...without the anxiety feeling.. Just seeing if anyone relates. Erika
  17. Well, no I haven't had that one....but it still doesn't seem normal to me...so somehow you have to get some help. I don't think it matters what it is,POTS, or otherwise...I would imagine Dr. Grubb could help.
  18. Hmmm. Well I am at a high point today. I recently went through a breakup and was so totally in love with him...but I love what Jan said....what kind of man leaves a woman who is sick? What kind of man ____? Fill in your own blank. This is certainly not a man who loves me in a way that works and somehow somewhere we will be better off. I still cry...and often. I thought this was the one...after a terrible marraige..but it wasn't. BUT I am at am really so much happier all in all. IU just am. I choose to only do what makes me happy. I exercise as much as I can...I focus on my kids. I am doing little projects around my house when able. I am chatting with friends...occasionally even have a cup of coffee. I read spiritual stuff.......and I vent often to wonderful people who understand. When we are at the end of our rope, tie a knot. I am sure I am older than you and my experienece tells me....life is like a ride, sometimes it is so great and exilierating...and sometimes it just makes up throw up. I really appreciate your honesty...God bless. Erika
  19. Hmmm. i did have this post Guillain Barre. It was terrible...once fell asleep standing in line at Disney!! With POTS, I am not really tired. I just can't function...terrible pressure up the bacj of mny head when I stand...pain down my arm...so ill feeling from any activity....but I am really not tired so to say. Really don't sleep well at all in fact...I usually need a sleep aide to help me sleep. Always feel like I am struggling for air and have chest pain a lot....not really comfortable to sleep!! No words of wisdom...just comparing notes!! Erika
  20. Hi All, I went to see my favorite EP this afternoon. My doc knows alot about POTS and treats many POTS people. So he was looking at the resutls and said he sees a misfiring in the artium. He thinks he can make me feel better with an ablation. I asked if then perhaps I didn't have POTS afterall (which we know if not the case as I always have a hr of 30+ when I stand)...He said he thinks there may be a few things going on but thinks that an ablation will help me. I got so excited....but then I started thinking of all the posts on failed ablations etc. Help....any input would be so appreciated. Thanks, Erika
  21. I was told it matters how many you have...I believe they told me it had to be over 500 in a 24 hour holter monitor test. Although I had about 1500 ventricular events andd my EP didn't seem too concerned. So that is my experience. Erika
  22. Yes, I too would uold suggest a home health aide. You might want to check your local community resources. It is a shame that many times unless you have a big name illness or are "old" it is more challenging to get help. Perhaps a neighborhood teenager who wants some extra $$.. I also want to know your history. I have had months of being so ill....many times I still am but I am seeing a lot of improvement...I say this so you can have some hope. Hang in there. Erika
  23. On toprol XL...loads of palps still...I always think it is the ANS acting up. Erika
  24. Helped to me too. .....it is so normal to be sick and tired of sick and tired...I do belive we just hang in there...live thru this and it does change...thanks for your post...we can all relate. Erika
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