Sue

I was just told that there is going to be another conference/lecture in July with Dr. Grubb and two other dyst. doctors speaking I am wondering if anyone here would be going???? I have never been but I am seriously considering, so if anyone else has gone to something like this could you tell me what it is like, how long, etc. Thanks Sue

As most of you know my children, mostly my daughter are constantly on this site reading and learning. My daughter is mostly angry with the medical field for the lack of knowledge in this area, especially the Emergency Room. Most of us go there only when the situation is more then ourselves or families can handle, when you get there you expect for them to be able to help you not further torment you by their lack of knowledge. What Kelly wants to do is download the NDRF book on dys. She then figures if she makes twenty five copies her and her friends are going to random doctors offices and drop the book off with a letter asking the physician (s) to please read the book and to educate themselves if possible. This from the mind of a sixteen year old!! She figures there isn't much she can do but if she could get other people todo the same and commit to even a couple copies it may make a difference. Please tell me what you think. She is bound and determined and has already a few of her friends involved. she figures if they drop them off it will save envelopes and postage!!! Sue

Thank you everyone so much for caring. Its too bad we all don't live close to each other.. Wouldn't that be great. All of you are the best support I have had with this. I really don't know what or where I would go without you's. Dr. Grubb believes I went into autonomic failure, I still am not sure. All I know is I can't seem to get rid of the presyncopic mode. I am constantly going back and forth between lightheaded and dizzy. No fun... I can't seem to find any relief. I call the dr.s office and all I get now is the nurse telling me I need to get patient. So I got smart and wrote Grubb a letter marked it personal and confidential, we'll see what happens. I'm spending most of my time either on the couch or in my room lying on my bed with the keyboard (my umbilical cord!!) lol Anyway I need to get off the computer, we have tormado warnings right now. It was beautiful and sunny an hour ago, now its storming and greyish yellow out there. Hmmm Michigan weather!!! Love you guys, Sue Oh and by the way that is so awesome that your family does that for you!! I think that is the coolest!!

Mighty Mouse & Tearose It is more than I am upset with myself, I don't think my daughter is mad, probley more disappointed that I wasn't there at her big moment. I had flowers delivered for her so she will be surprised when she gets home from school thanks for listening, always sue

My daughter Kelly has been playing soccer for a long time. She is actually really good at!!! Last night was her soccer banquet and even though I really wasn't up to going I forced myself out the door!! Well we get to the hall, can you believe the air was broke!!! It was 91' degrees yesterday without the heat index. So I told my daughter I would stay as long as I could. Well they stretched the dinner for two hours, why they do that I have no idea. The kids all had finals today... Well we got there at 7:00 by 9:00 I was wiped out, hot, and nauseaus. So I have my mom pick me up.. Two hours later!!! She finally gets home, She won MVP of the year!!!!! And I missed it. I am still so upset. I have always been there for my kids, never missing a game, event or anything. This was her BEST year, I missed every game but one and then I missed out on the best moment of high school. I still can't believe it. When she came home she was so excited and then started to cry. She wouldn't tell me why she was crying but I know why... I hate to disappoint my kids but I just don't know what to do. I know they understand but deep down inside I know this really bothers them that I am not there. To make matters worse they are both teenagers and I am one of the lucky ones that my kids want me there!!! If this goes on much longer, who knows maybe they won't even miss me being there That would break my heart. This is the longest it has ever taken me to snap out of this. It has been since January with two bad episodes ending up in the hospital as well. There are so many more people with this I don't understand why the medical field can't get a grip on this. There has to be an answer somewhere. I am so sorry to vent on you guys again, I just want my life back. I don't even care any more if I never go back to work or drive again. I just want to be able to function for two hours out of my house to attend the important things. Sry, Sue

((((((((((((((((((((((((((((((Stephanie and baby))))))))))))))))))))))))))))))))))))) thoughts and prayers your way, Sue

Danelle Before you do anything you need to sit down with hubby and have a heart to heart with him. I too thought my husband was at his wits end with me being sick. I finally told him we needed to talk. Here I am think he was at his wits end and ready to leave when in reality he was so scared for me he just didn't know what to do. My husband really believes I am dying a slow death. He has told this to my primary physician as well as to Dr. Grubb. They reassure him that I am not but he is truly afraid. I really had to sit down and reverse the situation. I know if I saw anyone going through this I would truly be afraid for them. My family walks on egg shells around me. They know the littlest thing can set me right off. But we have all sat down recently and I tried to explain to them the best I could how I feel when I am sick and what I needed from them. and of course I listened to them so they could tell me how they feel, especially my two teenagers. As far as your job can you take some personal time off. It sounds to me like you really need some r and r. Stress only makes our situation worse, I am sure you know that by now. I haven't been to work since January and am still not ready to go back. I hope things get better for you soon. Don't give up, keep searching. Sue

Hi Ernie!! First of all CONGRATULATIONS!! My advice is this. If it was me, I would wear either the compression hose or super tight nylons, and then the least I could get away with. Your not going to be taking off your gown anyway so why be HOT. Just one more symptom to deal with. Noone else will know anyway What a cool secret!! Then instead of being nervous up there, you'll just have a smile thinking if they only knew Best wishes, I for one am very VERY PROUD. Sue

Today I managed to struggle out of the house to do some grocery shopping. The last couple of months my children have had to do it. So of course I am buying everything in abundance!! Cases of juice boxes, copius amounts of cereal, frozen food, fruit, juice, etc So we're in line, my son and I, and he keeps asking me, mom are you ok. The lady behind us looks at me and says my god if I had to buy that much groceries I would faint right here on the spot. LOL Can you believe that.. How ironic for her to say that to me. I thought my son was going to bust his gut. I can only share this with all of you, noone else would think it was funny Sue

I too have been suffering with a nasty headache since upping my dosage of celexa, feels like my brain is swollen and throbbing.

Thanks for your responses, God always has a way of making me see my situation is not so bad. A friend called this morning to see how I was doing. Her in laws both in their 50's have been recently diagnosed with cancer. The father has esophagus and stomach cancer, the mother ovarian, had a hysterectomy plus over the weekend and found it everywhere!! They had to cut her open from her tailbone around up to her chest. The father is going through radiation everyday!! My girlfriend says he barely has the energy to get up much less dressed and out the door. Her husband is an only child and works 80-90 hours a week. So my friend has her hands full right now. I wish I was well enuf to help her, (I am going to make some dinners), but I also realize that I could be so more worse off then I am. I just want to function somewhat normally everyday. If I could only get rid of the "dizzies". Congrats on your pregnancy. Children are lifes more prescious blessings. I don't know what I would do without mine!! Thanks again Sue

Hi Paige Yeah I think thats where I am too, I am calling my primary physician tomorrow. she is a family friend and I can talk to her. Even though she is totally baffled by this she is my age and we can relate. We honestly did think about not cancelling our vacation but we were going to Florida in our camper/we live in Michigan so we're talking a 24 hour drive. So we have now decided to camp around Michigan. The weather is not so humid and I can tolerate it. My sister is also going with us so I won't ever be by myself. Thanks for listening Sue

I am so tired of this. I get two half way decent days and we're right back where we started from, actually almost worse. Started yesterday afternoon and today I can bearly sit here. I get so lightheaded and nauseaus. We finally decided to cancel our trip to Florida. I bet you know that makes me the hero in my family. I think everyone is sick of me feeling so bad. I have had to cancel so much stuff this year, I haven't even been to my parents in three months. Why?? Cause I just don't want them to see me like this. My dad is paralyzed from a stroke and it breaks my heart that he has to call me and ask how I am. I missed a whole season of soccer with my daughter, baseball is coming up and I'm betting we get to miss out on that too. This is my longest bad spell, will it ever go away Just another feeling sorry for myself day. sorry to vent on you guys AGAIN!! Sue

Hi everyone!! Just wanted to put my two cents in about Dr. Grubb. I too have had my share of disappointing appointments with him. He always seems to be pressed for time but even with that in mind, he does seem to be the one with the most knowledge on these disorders. So with that in mind. I would suggest keeping your appointment, but before hand talk to your physician and see if he/she would be willing to work with Dr. Grubb on your care. He has no problem with this. I still see Dr. Grubb, especially during the rough times. But imbetween he has been very good with communicating with my primary physician. Just a thought. Take care and good luck Sue

Dear Morgan I too am very saddened by your loss. I know how important our pets (more like our children) are to us. We have lost two dogs in the last couple of years. They can never be replaced but it is nice to share our lives with another pet. When your ready I'm sure you will make another kitty very happy and blessed. Sue

Nina Best of luck on your presentation, I for one am very proud of you. You seem to have accomplished alot in your life dispite all of the obstacles!! Bravo to you!! Sue

how beautiful both of your pictures are!! It is really nice to put faces to your names but better yet its nice to see even though we all have problems in our lives there are still BEAUTIFUL ASPECTS to them also Sue

Hi one more question from me I am now on 50 mg. of Celexa!! Is that a massive dosage or what??? When I first started off on it I was at 10 mg. throughout the last month Grubb keeps upping my dosage. I am wondering if anyone else is on that high of a dosage. Thanks Sue

Good morning!! I wanted to share something with everyone that I have been doing for two weeks now. I started on the South Beach Diet per Dr. Grubb, even though I am still so symptamatic I cannot stand the extra weight I put on with the Lexapro. More importantly I wanted to share with you my mental clearity has definately improved with this diet. Right now I am in phase I of this, which basically means I am only eating protein,(skinless chicken and turkey breast, Lean cuts of pork and sirloin hamburger) skim milk, low fat/ no fat cheeses, and vegetables. So I have not had any fruit, processed foods, breads, no cookies, ice cream, junk food. Only decaf coffee, (but have kept my gatorade, but one a day) and lots of water. You are suppose to stay on this phase for two weeks, I may do an extra one just because I like the way my mind is right now. After that you gradually let each one of the above in with moderation. So I may find my culprit!!! When I do, I will banish it forever (Unless of course, it is the cookies ) I am just curious if anyone has actually found that certain foods have made you worse off?? Have a wonderful day Sue

Wow our families must all be from the same planet!! Too bad that don't realize I don't want to slow down, I happened to have enjoyed my life the way it was... Moving into a new home is a wonderful idea, please don't overwhelm yourself in the move though.

Hi everyone Well I am disappointed. Before any therapy here in Michigan you have to be evaluated by the therapist. She doesn't feel water therapy would be good for me at this point. What she wants is for me to go to a cardiac center where you are monitored and have cardiac personnel right on hand. Which I guess is a good thing. But I love the water.. We have a pool/but not opening it til the weather settles down here. Lots of storms lately. Actually in the water is where I feel my best. So I was actually looking forward to this. I did talk to her though about it. It is basically a small in ground pool with seats around the outside border in the pool. You basically just sit there and start off with some slow leg excercises. Sounds nice and relaxing huh. Her concerns were that I would get sick and they are not equipped for anything at this facility. I told her I am never equipped for this/it is a part of my life. I even told her I would never come by myself, but she still wasn't satisfied. I am actually more nervous to think what they may want me to try at a cardiac center. NO TREADMILLS FOR ME/can't handle them anymore.. If anyone is thinking about this, I did questioned her about being covered on insurance policies. She said most policies do cover this as a cardia reconditioning. Sue

Deb You'll love this.... I don't know yet!!! All I know it is to strengthen my legs/blood vessels, and overall cardia. So I am imagining it is in a pool, and basically excercising my legs. Dr. Grubb suggested it at my last visit. and when I saw my primary physician she totally agreed. I am determined to do anything and everything to get this under control. oh and if it doesn't help the symptoms, maybe it'll help the weight loss... 32 out of the 40 to go. UGH I start tomorrow so I will let you know Sue

Hi After filling out all the paper work and telephone interviews they flat out refused me and said my husband makes a sufficient amount of money for our household!! What a bunch of crap. They wouldn't even look into all of the years I worked they just don't care. and then she had the nerve to tell me maybe this was something I would outgrow. Just one day in our shoes/thats all I ask then you watch how fast we would all be approved...

Hi Grubb has me starting water therapy next week. Suppose to strengthen the blood vessels and overall cardiac Just wondering if anyone else has done this. Did you see any results??? Thanks Sue

but the image in my mind was quite hysterical Sue