purplefocus

Today is the 4th anniversary of my moms death and I feel hopeless. I normally have a positive outlook even if it doesn't mean I go back to work or back to the way I was several years ago, but today I feel like what is the use. I get up and struggle everyday to just get to nite time. My symptoms are up and down, I never know how I am gonna be so I never can make plans. Today though, it just kinda hit me, like why bother, what's the use, who am I benefitting........I cause more work on everyone around me.......i'm not productive in any form. I am hoping that i'm just in a depression from missing my mom so much, I haven't felt like this since the beginning of my illness when I had to face the fact I could no longer work. It's just the thought that if this is the way the rest of my life is gonna be.......then what is the purpose. I'm sorry for being so down, I just didn't know where else to go. My husband has enough problems and my family and friends don't need to hear this. Hopefully today will go by quickly and I will feel better tomorrow. Thanks for listening. purplefocus

I am so sorry you are having to go thru that. I wish you the best. purplefocus

I don't know if my varicose veins have anything to do with the dysautonomia or the fact I worked standing on hard concrete floors for almost 20 years. I do have heavy restless and painful legs. After numerous complaints to my doctor about my legs and several different trials of treatments for them, we found out the Neurontin keeps it pretty much under control. Check with your doctor and see what he says. purplefocus

Baby boy, I hope you find out what is causing your symptoms soon and something will be done to help them. I'm sure the majority of everyone on here can relate to the physician saying "its" anxiety. Will your testing involve a tilt table test? I wish you the best of luck. purplefocus

Hi everyone. I was just considering this morning of calling around for interviews for a job.........and I came in here and seen all that ya had written. I haven't worked now for almost 2 years, I still have daily symptoms but I feel so guilty not helping out more than just my disability check. I miss so much being a nurse that I think (mind over matter) that I can make myself better to where I can tolerate it. I really don't even know where to start......I want to work back in nursing, but I don't feel it would be safe for my patients so I am just at a lost right now.......plus the argument with my husband, his concern that I will just cause more problems than I already have. I''m sure most of you are understanding what I am saying. This disease is so frustrating. Mary Jo, I also think sometimes am I just being lazy. I know I worked my butt off for 20 years so why would I get lazy now? I guess because I often don't look sick on the outside then people look at me like.....what's wrong with you. Seems like alot of us can relate. purplefocus

Jan, I agree with the others.......accept help from all that offers. I am so sorry that you all are having to go thru this. Being positive will help both of you tremendously. I am glad you had the time with your family today......to me being with family always finds a laugh somehow. I am praying for both of ya and will have others praying. Jan, can you call your doctor to see if maybe a little change in your medicine right now might help you, maybe stop some of the chest pain. You can do this.......somehow the strength will come to you and we will be here for whatever we can do. I will make sure there is alot of prayers going on while ya are at the oncologist tomorrow. purplefocus

Jan and Jeff, I can't begin to imagine the fear both of ya are going thru. You both are in my thougths and prayers. I also have family members that have survived cancer that no one thought they would and are still doing great. Miracles happen everyday. Take care of yourself Jan. Purplefocus

Hey everyone.......I have been in a pots hole for weeks now but this thread just cheered me up so much. I have a few contributions.........how about Nickelbacks song.........."Flat on the floor" or Led Zepplin....."Dazed and confused". Peace to everyone and stay cool in all this heat. Purplefocus

Welcome to the forum......I know you will get alot out of here. There are times that I don't know what I would do with out the support of these guys..... For your question about working. I am also a nurse.........had worked for 17 years then had to quit Feb. 2004 due to POTS......passing out in patients rooms is not a good thing, lol. I do miss it and hope to get back to that one day but for now I stay at home and I did get approved for SSDI. I am currently working with a doctor that actually knows about dysautonomia and we are goaling for my return to work. Can't ever give up hope. purplefocus

Nina, I hope you can get out of that hole quickly. I admire you for all that you are accomplishing. I'm sure you will be out flying in no time. purplefocus

If you are unable to , can you get someone to help you bathe on your bed. All they need is a large bowl of water, soap, several wash clothes and towels. I used to work in a nursing home and we did this everyday. You just bathe or have someone bathe you as normal and then rinse off with a wet clothe and dry. We put towels underneath the person where we were bathing them to keep the bed from getting wet. This is also good for your circulation. It might take awhile to do it , you might have to take many breaks, and it might be something that you can do a few times a week . Just my suggestion. I sit in a shower on a plastic yard chair and use a shower nozzle. Sometimes I do get very tired and just have to sit there or get my husband to help finish. Also, the cooler the water I can stand the better I tolerate it. I wish you the best. purplefocus

I am so glad he is ok........and everything else seems to have a way of working out. purplefocus

I often feel like a burden to my family but I have tried to realize that I did not choose for this disease to hit me. I would much rather be working and doing with my family as I did several years ago but that is not the path that was chosen for me. My husband at times seems to want to make me more dependent than I think I am and then there are times that I don't think he believes I'm sick. We haven't had marital problems and I don't forsee it but I do feel guilty. Guilty for the things that they (hubby and sons) miss out on because they won't leave me alone. I have thought about leaving also but that is in my minutes of severe depression. I'm sorry you are having to go thru this, you aren't alone, and I wish I had words of comfort and wisdom for you. purplefocus

I don't have any advice, I just wanted to add I know how you feel. This is my scene......I get comfortable in the low stage, but I think I should be pushing myself incase I can get better.......then I do push myself and knock myself into a large crash. I like to think that it will go away one day but I do try to stay realisitic. My fear is becoming so deconditioned that I won't be able to get out of it. purplefocus

I am so sorry for the pain you are going thru. I totally understand that tragedy of losing love ones. I have endured this the past 7 weeks. Just remember that tomorrow shall be a little easier and then the next day a little easier than that one and you will get thru. You were offered wonderful advice here. I am praying for you and hope you find your peace here. purplefocus

Guys, I need help again..........after my exmother n law died, two weeks later my Godmother died unexpectenly and now Mindi (my 7 year old niece) passed away yesterday. I have not been able to function at all since I talked with her mother yesterday. I have no idea how to adapt to this. I am so sad but so very angry. This little girl stayed with me the first years of her life while her mother worked and went to school and then after that she was more with me than with her mom. I had so much pain when my own mother died 3 years ago but this is so different. My symptoms are greater now than they have been in so long and all I want to do is sit and stare. I need to be able to help my 2 sons who loved her dearly but I can't stand talking with them either. I need advice. Right now I want to find a deep hole and dive into it. Enough is enough. Thanks for letting me vent. Purplefocus

Hey Everyone, My husband and I enjoyed reading this post together. It was so funny and the dating part was hilarious. This is the job that comes to my mind but I don't know what it's called........the guy that stands on the runway and holds the lights to direct the planes. Can you imagine. This was very uplifting. purplefocus

Mary, Thank you so much for your post. My niece.......her name is Mindi and she just turned 7 last week. She has been dealing with the leukemia for over a year now. There is nothing else they can do for her, they say if they do anymore chemo that her liver and kidneys are so damaged that it will be terminal so they are just stopping everything and making her as comfortable as possible. Last week she got to spend a whole week at Disney World with her family, she has an older sister and a younger brother. She is a precious child and I don't understand but I don't focus on that I just focus on spending as much time as I can with her. Thanks again everyone for your support. purplefocus

Nina, I hope the pain is less today. Girl you need to put up siderails or something in your house or change the "Nina moves" to the Nina New Moves". I really hope you are feeling better. purplefocus

Thank you guys for all the support.........we were able to get thru the funeral and everyone stills seems to be intact...........my niece is pitiful..........they have started given her morphine now for all the pain she is having.........she no longer can walk. It is just so very sad but somehow we will find the strength to go to the next day. Thanks once again to all of you. purplefocus

Jessica, Congratulations on "It's a Boy." I have 2 boys also and I wouldn't want life without them. They are so very loving. It is wonderful that you are having good health. purplefocus

Mary, I'm so sorry you had to deal with the incompetent people at the ER. I'm praying for you to get out of this cycle you seem to be in. I know life is just too hard at times, but some how we do have to find strength to push on. I have the wake to attend tonite and then the funeral tomorrow. It has been tough, but so far my symptoms have stayed intact. I hope you daughter is well. I guess as women, no matter what we are going thru, we feel like we have to keep going. Maybe something that is in our genes when we are born . Peace to you Mary, Purplefocus

Thank you all for all the encouraging words you had to say and all the strenght you sent my way. Apparently I receieved it..........I have went nonstop for almost 12 hours and I haven't had any symptoms. I was able to assist my ex sisinlaw with all the preparations for her mom, call as many people as I could possibly remember, shopped with my boys for appropriate clothes, and took my boys to see there dad and I was actually able to comfort him in a way............My neice is in disney world this week thru the wish foundation..........it is her dad's mom that passed...........they are suppose to becoming home thursday for the funeral...........it just seems to much for one family to go thru but I know there is a plan for everything. Just thanks guys for letting me vent here and you know what I have to mention this my husband has been so understanding and has even offered his assistant to my exinlaws for anything he could do for them. I am greatful for this site. Thank you purplefocus

Guys, you know ya are the strength that helps me get thru the days sometimes. Well this is off topic but I need peace, prayers, energy.........all sent my way. I hope my symptoms stay intact over this next week. I found my exmothernlaw of 17 years dead in her house yesterday...........along with that, my neice that is 7, probably on has a few weeks to live if she survives that long (leukemia).........the family is so at odds with each other that no one will do anything and I use to be the strength in that family and I see them trying to pull me back into it. I have to be there because of my two sons........please send me peace. Thank you guy purplefocus

JLB, That is so wonderful about you being able to sit thru all those hours. You story was an inspiration. Paige