Jacquie802 Posted December 30, 2005 Report Share Posted December 30, 2005 I have seen many posts about families not understanding POTS and making comments that we must be lazy( I used to get those alot!). Know what bothers me the most...? No one in my family ever acknoledges (sp?) that something is wrong with me. They expect me to do all sorts of things a healthy person can do. It just gets frustrating...I'm not asking for special attention or anything, I just want ppl to understand that I really can't do some of the things they ask me to do, w/o them getting mad...Oh, I had posted earlier about how I applied for disability and all my specialists told me to have my PCP fill out the health insurance form...so today while I was sleeping I got a message from my PCP nurse practitioner for me to call her back. I put it off today because I know she's going to tell me I need someone else to fill it out, etc. etc. and I really don't feel like dealing with it...all I want is insurance to get these tests I need done....I guess I am asking for alot. Is anyone else having any of these problems?? I know someone out there must be LOL! Thanks for listening/reading/whatever you wanna call it! Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted December 30, 2005 Report Share Posted December 30, 2005 Yes... FRUSTRATING!!! Mom and dad (both have pacemakers...) both tell me that if I would get a pacemaker I would be just fine. I tell them I have had one for almost three years now and so far it hasn't helped. Dad faints but won't acknowledge he has a problem... ERGGGG!!!!!!Glad I'm 3 hours away.I go months at a time without talking to them because they always ask when I'm going to get a job. My dad actually told me not to move close because "the state can't afford any more freeloaders"! Let's just totally ignore the fact that I held down a job - usually 2 or 3 - for 30 years and paid into Social Security... Quote Link to comment Share on other sites More sharing options...
futurehope Posted December 30, 2005 Report Share Posted December 30, 2005 Let's get realistic. If you do not have this disorder, it is VERY difficult to understand how it impacts everyday life, especially if you LOOK fine. Right?After three years, my husband/family still ask me to go on outings that I know I can't do. I say I cannot and I'm sure they think I'm being masochistic or self-pitying or something.You have to realize that only YOU can understand what you are going through and be patient and forgive all the others who don't understand.It could be worse. What if we didn't have this forum, or the internet? Then we would REALLY be suffering in silence. Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 30, 2005 Report Share Posted December 30, 2005 Hi JacquieI know what it feels like for people to treat you as if nothing is wrong. The only family that is around me is my husband, son, daughter, soninlaw and grandsons, and they understand, because they have been through it with me every step of the way. The ones who dont understand is my friends. They never call me any more and never come by to see me, they cannot understand why I cant go to church. I have told them that it is not only the sitting but it is everything else. The fatigue, the lights the loud music the different odors, I cant handle any of them any more, but I still dont see or hear from any of them. I guess they are just too busy in their lives or something. I too had problems getting one of my doctors fill out a form. Finally my lawyer sent out a seperate form to each of my doctors,and as far as I know they have all filled them out. I know that if Social Security department goes by what my Cardiologist said I will get disability the first time. It is frustrating when you feel so bad and people treat you like nothing is wrong with you. VanessaI have seen many posts about families not understanding POTS and making comments that we must be lazy( I used to get those alot!). Know what bothers me the most...? No one in my family ever acknoledges (sp?) that something is wrong with me. They expect me to do all sorts of things a healthy person can do. It just gets frustrating...I'm not asking for special attention or anything, I just want ppl to understand that I really can't do some of the things they ask me to do, w/o them getting mad...Oh, I had posted earlier about how I applied for disability and all my specialists told me to have my PCP fill out the health insurance form...so today while I was sleeping I got a message from my PCP nurse practitioner for me to call her back. I put it off today because I know she's going to tell me I need someone else to fill it out, etc. etc. and I really don't feel like dealing with it...all I want is insurance to get these tests I need done....I guess I am asking for alot. Is anyone else having any of these problems?? I know someone out there must be LOL! Thanks for listening/reading/whatever you wanna call it! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 30, 2005 Author Report Share Posted December 30, 2005 Thanks for the replies, I am soo very glad that you guys are here. I was wrong about my PCP nurse practitioner she had left a message on my cell phone and she said that she needs me to come in so I can answer the questions that she has to fill out ( I never see them for my POTS since I have the specialists). Thank goodness. So now I go in Wednesday and I am going to tell her about my SOB, etc. and I am going to bring in all my medical records that I have so they can copy them, etc. I guess it helped that I left a note with the form so I can get ins. that explained all the probs I have been going through about getting the form filled out. So, I am feeling a little better. Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted December 30, 2005 Report Share Posted December 30, 2005 Jacquie-Make sure you post about what she says about the s.o.b., it is major symptom for me right now and I am curious to what someone else says about it,I hope you start feeling better sounds like oyu are a little.Take care..Belinda Quote Link to comment Share on other sites More sharing options...
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