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About lieze

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  • Birthday 09/10/1966

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  1. Oh boy so all this worrying about BP could be somewhat a waste of time.
  2. Scout one of my episodes at work was triggered when I turned to look over my shoulder so I get what you are saying. I had been “okay” up til that point so I have also wondered what was up with this head turning ability to trigger an episode.
  3. You are my hero. So much respect for what you did and what you are willing to sacrifice to experience a time slot of “normal”. I sit and lament about loss of life in the form of what I call living but I am a wimp. I get freaked out and scared off of trying because I fear the symptoms and implications too much. And by implications it is all just fear of the unknown to me. There are no secrets I know that I am holding back as far as what we should be doing or what we shouldn’t be doing and what will happen accordingly. It’s all fear and anxiety that hold me back. And trying to string up a bunch of events like dot to dot and make sense of it and I can’t. I don’t get it.
  4. I had inquired about home health care a couple weeks back. I am getting PT , OT, Speech therapy, a social worker is due to come out also. I have an aide that comes twice a week to help with my bath although that did not go well at all Friday. Even though I took a very short bath it triggered an episode that lasted for hours. Got so overheated after. But I am receiving services through Medicare for anyone that this might help. Requirements are being home bound for six months with extreme difficulty going places. Requiring assistive devices when going places etc. Obviously I do have Medicare but I believe these services are also available through Medicaid. They last for 4 weeks at which point you are re-evaluated. I just started last week. They do take vitals when they come out and record them. For my PT they want me standing at least 12 minutes and I can choose a task around home I want to get done for that 12 min. Wow you know what I get to choose between 2 or 3 days a week for the PT. Right now I am 2 days but I’m just thinking if I chose 3 days and I am feeling up to it then I would have that oversight for an extra day.
  5. I’m sorry you had to go through that scary uncomfortable incident whoami. I’m glad you are okay.
  6. When I could tolerate warm baths I felt it helped me. I couldn’t do hot but soaking in a warm tub was very soothing to me. I just had to be cautious when I got out that I gave my body a cool off period. But then I was up and ready to do some tasks or a short outing and felt moderately good and did not get symptomatic.
  7. I have a full house here and many things end up on the floor. I can bend once or twice but when I start looking around and there are a dozen things laying on the floor I get overwhelmed. I’m not sure I’m tolerating all this bending well. I have had grippers from time to time but I think the ones I gave bought have been cheaply made and fall apart easily. I’m looking more at getting a heavy duty one that can handle picking up heavier items. Either that or get a kid to help with that task. It honestly has been a cause of much frustration that my family will just leave things on the floor or I think my husband will purposely go to the store and come home pull the food out and throw the bags on the floor and there they lay. It is a small thing not worth fighting over. But I think it might be my POTS or health in general that makes some of this stuff that should be trivial like climbing a mountain for me. I realize my family already sacrifices and have to put up with having a sick mom/ sick wife is how they view me I think. yesterday when I walked out to the kitchen and saw the bags once again on the floor I was like screw it just get a gripper pick the stuff up and quit stressing over it. i just wondered if you think it’s POTS that makes all of this more challenging both physically and emotionally.
  8. Keep up the exercise if you can tolerate it. It is one of the recommended treatments. Or things that seem to help it. I am not sure that treatment is the right description.
  9. You are amazing to have gotten through that tremendous challenge.
  10. Yes I’ve felt it before.
  11. I am also very frustrated with this and comments I get. At the moment I do not have the energy to try to explain my own situation but I get it. i just feel angry and want to cry this morning. i think my coping is running low. i wish you the best hang in there. We need support just from the emotional psychological toll this all takes. I don’t know that talking changes anything though-so sad.
  12. This is what I got. It may not be practice for all purposes but I got it because at the time I was hoping to get out to outdoor activities with my family. I got a really good deal on the price. I would probably like to have a wheelchair also which would be much more portable and for certain situations more appropriate. I love the scooter though. I have not been able to try it out yet other than around home. I’ve become very heat intolerant and have had a bit of a worsening of symptoms just here lately.
  13. Have you tried the neck brace and did it help? if I knew I could live a normal life just no head movement I would probably do it
  14. I will ask with my doctor. I had looked up what you needed to qualify and it looked like maybe I did but I could be wrong. I will update once I find out. I have Medicare part A and B. I pay a monthly premium for one of those.
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