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bellajulz

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Everything posted by bellajulz

  1. What l use to be: Independent mommy of 3 little ones.. Worked full time as a police dispatcher/9-1-1 operator, worked 12 hr. shifts on graveyard.. On my days off I would work on a business of my own (framed poetry) along with everyday day to day life! I lived alone, was dating, my daily workout was kickboxing and playing with my kiddos One evening (Sept. 2008) out of the blue I fainted without warning, this was the beginning to my now.... My mother became my caretaker very graciously. In December I was dx after numerous hospital stays , my cardio advised me to move immediately out of my home which had mold in the closet, I moved out within a week, by this point I could no longer work, drive , bathe on my own ( too weak) or care for my children without help or even stand without fainting. I became housebound in a new home (no mold). I was never left alone . I fainted many times and was transported by ambulance so many times due to my stop of breathing during the worst fainting bouts. This leads me to my question... I haven't fainted in a month, I can pretty much tell when I am going to faint though I am limited as to how much I can do since I have fainted standing, sitting and while in bed. My family is very close and over protective (even when I'm healthy) but times this by 100 now... I want to start venturing on my own, I have slowly begun walking to the park around the block or my community pool 2 blks away from my house. This freaks everyone out!!!! I try to explain that if I do something it's because I'm up for it, I wouldn't put myself or my children in danger. Last night I was feeling depressed and frustrated and bored, (kids were gone at their dad's) so I went for a short walk to the pool alone to clear my head... well this enraged my family who said I was immature and trying to get attention by worrying everyone. (I?m 29 by the way not 15). Well this of course was the opposite of what I was trying to do, I want everyone to back off to leave me alone and not have a say in everything I do. Though which by the way is impossible since I am pretty much home bound aside from my short walks to the park down the street. My mom still lives with me and has continued to be my full time caretaker, (which I feel I no longer need). Please help me and tell me if you feel I am being unreasonable? I just feel that my entire life has been stripped away, and it?s so heartbreaking for me. I feel so smothered, as I have a constant babysitter, (though for my own good they do this, I know) I try telling my mom she can move out and that I can call her when I need her help, but she refuses stating that I'm not well enough. The horrible part that she's half right... My siblings have also all pitched in to help me, but I don't have anyone that understands. They believe it's unsafe for me to drive or to be alone. Which is sadly partly true still.. I was looking into a service dog as I think this would help, though most of the wait lists are at least 2 years... Any ideas would be so helpful...
  2. My prayers are with you both... I also wanted to say that though you feel a bit helpless during this time, by being there and doing what you can I'm sure is enough for him. He obviously loves you very much and the emotional healing you can help him with is in just your presence. I hope you start feeling well soon also.
  3. If I may say it is much better to vent then to keep it in. I really do hope you start feeling better and are able to eat soon. Please don't feel bad for being depressed I think at one point (or more) we all feel this way in this illness. Please believe that things will get better, and always feel open to venting with all of us that truly do understand. My prayers are with you...
  4. I just wanted to add that apart from our illness and disability that when I left my husband a few years ago with 3 little ones , I as a stay at home mommy at the time qualified for emergency cash and food assistance with the state I live in (AZ). I continued recieving partial assistane after getting a part time job. I am positive your state offers some type of assistance for you while you are awaiting disability. Also, I began receiving child support which helped too. I hope and pray the best comes out of this for you. I agree with potsgirl, check out your state's websites.
  5. Thank you for your responses... I have had an EEG a 2 hour one and then a 24 hr. when I was in the hospital before I was dx with pots in Nov. 08' and I acutally had a full blown "episode" while the EEG was hooked up just as I explained in my first post. Both came out negative on the siezures. As for the crying, I do this with every fainting bout' and when I'm close to fainting and feel so silly but no doc. has been able to explain why this happens to me. My cardio does not seem at all concern for the loss of breathing and continous fainting while laying down, though this happens about once every 2-3 months or so.
  6. I have been on Midodrine since dec. 08' and can't live without it, I'm not too sure what side effects I've had other then feeling fatigue , but without this medication for me I would not be able to function at all. I went from 30mg all the way up to 70 mg a day to now 50mg. I have found that this med has been a life saver for me, but find that it wears off about 3 or so hours after talking it. Hope this helps!
  7. I wanted to see if anyone had similar fainting episodes as I do... or if those of you who are fainters could describe what happens to you when you faint. (as best you recall, of course). During a normal episode for me I can usually feel it coming on, my arms and legs get tingley, my heartrate goes up I have an upside down feeling as if I'm being flipped upside down on a rollacoaster. I then usually drop and then began crying which I do not know why. Then I have to lay flat for about an hour in order for it to pass. Though I usually now can just lay down before actually fainting. This is what happens on rare occasions, such as last nite! I was feeling the lite headedness and upside down feeling over and over, naseaus. I was laying flat waiting for it to pass, which it didn't. I got up to use bathroom (which for some reason everytime I faint or feel faint have to do) and on the way back to my bed I fainted and began crying uncontrolably , though I was not in pain or even scared. I continued to faint for the next 20 minutes or so even while laying flat, I then had the sensation that I couldn't breathe and began gasping for air and was still fainting over and over. I was transported to hospital and was eventually back to normal. Though my question is does anyone else cry when they faint or near fainting? Does anyone ever stop breathing for any amount of time? Does oxygen seem to relieve any symptoms? Thanks for any input!
  8. I first got sick in September 08', and have been out of work since October 08'. I never ever expected to be out of work this long. I am hoping to go back this summer starting out with 4 hours a day, but even that's a stretch for me as I can only go for about 20 to 30 minutes of any activity before feeling faint or actually fainting. I too, am surprised and in awe when I see that others with POTS are able to work or drive, though it gives me hope.
  9. I had a day like that recently and I'm happy you were out and about! May you have many more days just like this!
  10. I am very sorry that you are having such a hard time... I have been finding that there are days that I feel exactly the same... I think I must be home about 90% of the time since I got sick in Oct. 08'. On MY good days, I have been sewing anything I can get my hands on.. catching up on emails... polishing my nails... and my latest is starting a blog. At times I am so bored and frusterated that I just lay in bed... I think it's just about finding what fullfills you at the moment... This entire experience with POTS changes everyday for me and the emotional ups and downs can be tough to keep up with... I will keep you in my thoughts & prayers... I hope you feel better soon...
  11. You Go Girl! I say go for it! It sounds like your b/f is very helpful and will help you at all times... As far as any tips.. Sounds like you have most things set in place? Do you use a wheelchair? That's the only thing I can think of that may come in handy. Have lots of fun and don't forget to take lots of pictures!
  12. when you click on someone's user name a small window should open up and you have the option to either send msg./ add as a friend/ or view profile. I just clicked add friend on your name... hopfully that works for you. :)

  13. I am so with you! Anything I can do to help, let me know. Good luck!
  14. Hi, I just wanted to add that I live in Phoenix and the flight from Phx to LA is usually only about 45 mins to an hour depending on the airline. Thought that the shorter trip might help you out! Good Luck, my prayers and thoughts are with you!
  15. Hi there, I am new to posting, but just wanted to let you know that I too am having the same kinda week. Being positive is usually my strength, but this week I am just frusterated and mad that I can no longer fend for myself. From driving to putting the dishes where they belong. I actually wanted to say thank you for sharing your frusterations, because I was feeling very guilty and silly about it. Though reading your post showed me that its maybe just part of what we are all going through while we must learn to live with POTS. I really do hope you feel better and have better days!
  16. For me I try to give each new medicine at least a full week to determine whether or not its effective or not... I can usually feel the difference, but everyone is different. Good luck! [ i take it at 20mg one time a day per vanderbilts instructions and i was wondering how long do you have to take it to know if it is going to help or not.
  17. I take it at 20mg three times a day, I started it twice a day and after a week doc said to go to three... it seems to have helped me but I also take Midodrine (50 mg day) which for me the combo seems to do well in helping me perform mild tasks. I had tried the beta blocker alone which did not keep me from fainting.
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