momofsara

Sara had these used on her when she was in the hospital and her B/P was very low and didnt want to come up. They made her feel much better. Susan

As ususal, very well said firewatcher.. you always have the best way of expressing yourself..... Great advice........Susan

From one Mother to another, you have my heartfelt understanding and sympathy. My Sara has had her periods of losing her will also. And truly it is not any wonder when you are so young and see the rest of the world passing you by.I think depression and despair are some of the worst symptoms of this whole dysautonomic problem. Your body cant get better if your will is just too defeated to keep on trying. I dont know what methods may work for rebuilding her will, but I certainly hope something happens to help her. The same thing doesnt work with everyone, but with Sara, I simply told her if she didnt fight, she wouldnt live, and if she didnt live, I would lose my will also.... I tried to impress on her how vacant all our lives would be without her, it did seem to help her some. As I say, each person is different, so that might not work for her. As to the insurance deal, is there a possibility for home health?? They do some physical therapy also. We have had to fight for certain treatments for Sara also. Her doctor has been very helpful in getting her tests and treatments as well as hospitalization when she needs it. All that can be very difficult with Medicaid which is Saras only insurance. As others have suggested, your daughter sounds as if she could be admitted for IV infusion due to dehydration. Surely he can come up with something to warrent a hospital stay.. I am hoping he will think of something soon, immediately would be best!!!! I also know how hard it is to deal with this sort of thing, and your own will can begin to sag as well. People I've known for years who know something of our problems, will say, "I dont know how you do it", and I always say, " You do what you have to do, when its your child". Mothers always come up with the strength from somewhere way down deep inside. So, keep on fighting for her and for yourself. Please know that I will be holding you close in my heart and prayers for help with the insurance and also for your dear daughters renewed fighting spirit. Please keep us posted and know that we are all here for you any time. Much love to you both.. Susan

Welcome home, Ernie Hope you get some helpful information from your visit to Mayo. Best always-- Susan

Glad to hear the good news !!!! Susan

Simply beautiful!!!!!!!! Susan

Sara's numbers tend to be very close at times. Just Tuesday on a routine visit to have her power port flushed, her b/p was 106/88--- now, the upper number is fine for her, but the under number is too close to the upper and its also too high. She was feeling very bad that day also, more sluggish than normal, not mentally alert, having trouble finding her words, etc..... The closest I know of her numbers being is 15 I think. I cant think of any particular trigger causing hers to do this. Maybe its one aspect of the dysautonomia thing. I know I havent offered any real help here, but lets you know someone else is bothered by this problem. Best to you always, Susan

You are truly blessed.... And you can give yourself a pat on the back for your influence on your sweet daughter. I'm sure she learned much of her thoughtfulness from you. Cherish her and your family, they sound like "keepers" !!!!!!!!! Wishing you a belated happy anniversary and valentines day--- Gentle healing hugs, Susan

Amber, sweetie, I'm so sorry you are feeling so bad. I can understand a little about the mental illness thing, I've dealt with severe depression myself and Sara has some mental issues as well. I have been able to overcome my severe depression through counseling, medication and lots of prayer. I do know the frustration and fear associated with a mental illness. You have many friends here, and we are not judgemental, only compassionate and caring. I do know from Sara's experiences that medications can have such an impact on your mental health. Take good care of yourself and come here often for support and love..... Sending gentle healing hugs to you (((((((((Amber))))))))) Susan

Sara has this same problem with her speech. She also "loses her place" in the middle of a sentence, has trouble finding her words, etc. Yes it is very frustrating, and embarrassing for her. She will look at me sometimes and say," Mama, what is the word I'm looking for?"....... I guess it must be a common problem.. Susan

Likewise, Sara has never had a problem with needles, being stuck,blood, etc...... However, when the dysautonomia symptoms started, all of a sudden she felt very lightheaded, and like shes going to pass out. Her former neurologist explained that it was because it was an insult to the body to be stuck and the feeling of presyncope was a reaction to that. Now she is always prepared for the feeling and we try take preventative measures.... Susan

Welcome to our world, Bri- You have found a place where you will be encouraged, educated and always welcome. This forum has been a godsend for me. The only thing I will add to whats already been posted is to always get copies of your tests and reports. They will come in very handy many times. Sending you positive thoughts-- Susan

Just adding another voice to your post. Sara has experssed the same feelings to me as you. She has lost all her "so-called"friends, who at the age they are, have moved on with their lives, are out there having careers, going places, traveling, having families of their own. She feels so left out at times. I try so hard to fill as many needs for her as I can, but there is still a void I cant fill. When I take her to the doctors, it ends up being an exhausting outing for her and she is almost always bedridden for at least 1 or 2 days. If you read my post a few days ago, you know that we had a small family birthday gathering for her and it put her to bed with exhaustion. But it was worth it to her. I'm happy you have the older couple you mentioned to spend time with. Many times, older people are more understanding of medical problems than young folks. Spend as much time with them and your family as you can. Please know that we are always here for you and we do care about you. And this is one place you can come to be completely accepted and no explanations are needed. Sending you warm, healing hugs, Susan

Dear Suzy, I'm so sorry about your terrible experience. As if fainting in the grocery store isnt bad enough, medical personnel(who are supposed to be compassionate) treat you like you are being a bother to them. After all are they not getting paid to take care of people who come in the ER? Do they make less money if you are not having a heart attack, or have cut your leg off?????? Beats the heck out of me why they want to act this way. Sara has had experiences similar to yours, and let me tell you, it *****!!!!!!!! I would be willing to come and help you and Jan kick some white clad butts........ Just hang in there, sweetie, and dont let the jerks get you down. We all understand and are here for you anytime., Hugs and healing thoughts. Susan

HAPPY, HAPPY BIRTHDAY, AMI---AND MANY, MANY MORE---- HUGS TO YOU SUSAN

Maybe we all need a new game plan! Its true so many of our friends simply can't handle the truth (I can hear Jack Nicholas in a Few Good Men -- You want the Truth? You CAN'T HANDLE THE TRUTH!) Alright then, let's make up another story. Instead of telling friends (and family) that we are too sick to go out,or we have to cancel at the last minute, or explain why we are suddenly on the floor in the mega-mart ... let's tell them we have joined a secret branch of the secret service. Heck, we can even call it DINET -- and tell them it is like Die Hard with a twist. Much of what we do happens behind closed door, so we'll be spending alot of time at home. Because my new job takes me away unexpectedly I may have to cancel plans at the last minute. Oh, and if you see me drop to the ground, you had better do the same because there may be snipers in the area! I bet in this status conscious society we'd have a lot more "friends" hanging around, willing to put up with our odd hours and strange schedule because they thought it was cool to be friends with an international spy! As for finding the strength to go on .... sometimes its just one giggle at a time. May you smile just once today. ~EM EM---now that I have picked myself up off the floor from laughing You have hit the nail on the head and drove home a wonderful point. Love it, love it, love it...... I'll be sure to pass this along to Sara... she will get a laugh from it too..... Love your sense of humor-----keep it coming, we need it here.. Thanks for the chuckle.. Susan

Ernie--Holding you close in thought and prayer-- Best of luck at Mayo Susan

OUCH!!!!!!! sounds like a nice tall, cool drink and a big fan are definitely in order------- Take care and stay as cool as possible. Susan

Just thought I'd post a bit of good news. Last weekend we had a very small (family) birthday party for Sara. She was able to attend and felt pretty decent for most of the time. She enjoyed herself even though she was pushing the last part of the time. She was totally wasted the next day and slept most of the day away. Still wasnt up to par by the day after that, but she was still thinking about her party and her gifts. She so totally enjoyed it all. It was so good for all of us to see her be able to be up and with us for the celebration. She really enjoyed her birthday cake. It always does my heart good to see her up and about. Anyway--just wanted to share our joy and happiness, seems its rare these days....... Love and best to all Susan

Katherine, I'm so very sorry your Dad is not supportive of you. Speaking as the Mom of one who suffers with the effects of dysautonomia and numerous other maladies, I cant imagine not being fully involved in Sara's life. Yes, it hurts to my very core to see her sick, but also it makes my heart sing with joy when she has a good day and we can laugh and enjoy each other. The pain comes along with the joy when you are a parent. I hope you feel the love coming your way from this forum, because its definitely being sent your way. I hope your Dad will come around and become involved in your life, I know its very painful for you. Take good care of yourself and good luck with the new doctor. Keep us updated........ Love and (gentle) hugs, Susan

Welcome back, Amy---Take care of yourself, hopefully your doctors will find some help for your many problems. Sending healing thoughts your way-- Gentle hugs (((((((((AMY))))))))) Susan

Suzy--When my Mom was living, her doctor would get very concerned when her HR went below 50. She typically had a low HR normally, but if it got too low( under 50 ) she would be very weak, lethargic, etc. Susan

Sara definitely gets low grade fevers if she pushes too hard. Most any over-exertion can bring on this problem. After an outing to the doctor, or to have a meal at our house, she will typically be in bed for at least 2 days. Not always with a fever and exhaustion, but very often its both. We have wondered for a long time if it was dysautonomia related, and had decided it was just a while back. Hugs to all--- Susan

HIP-HIP-HOORAY!!!!!!!!! I'm so very happy someone went to bat for you. It is nice to find out that there are still some people out there who will see a need to help someone and DO IT. Glad it worked out for you---- Best always Susan

I have a question to pose to you all. When Sara was very small (just learning to walk), she fell often,what child doesnt? However, after a while, we noticed it seemed as if her legs were not altogether "right". On a regular doctor visit, I asked him about this. He had her walk for him and watched carefully, he said her hips, knees, and ankles were very loose. Described it as a steering wheel with too much play. He said if the problem didnt get better in several months she would have to be put in braces. I've been thinking about that lately and wondering if she could have something along the line of EDS. She still has one leg that swings outward slightly when she walks. I hate to put her through any additional tests right now. Also I dont want her doctor to think that I just keep dreaming up stuff to be wrong with her. Its not that, I just am trying to find out all I can to try to help her feel better, or at least know whats wrong so we can deal with it. Do any of you who have EDS think its possible that could be something for us to be concerned with??? Thanks for listening and offering your thoughts on this subject. Best to all and once again, thanks Susan