mindylee1

So sorry to hear your having such a hard time. I have been feeling like that alot lately. My muscles hurt sooo bad I can't stand it sometimes. Have you ever tried Epson salts?? take a warm bath with some epson salts.. this will help those charley horses. Let me know if it helps hang in there Mindy

Boy it's been a horrible last few days. Starting Friday morning it felt like my heart was racing a mile a minute. I took my bp and hr and it was 165/102 and my har was 125...resting. I started to develop my tremors and couldn't stop shaking or catch my breath. It kept going all the way up and all the way down. I called the Doctor and he said to back off of the Effexor...which he was having me increase. But I know it wasn't that because when I up my effexor I am really slow and spacey. Any Ideas why this is going on. It has been so scary. My bp and heart rate are usually quite normal until I stand they they just drop. I don't know if it's new meds or not...COQ10, riboflavin, Levisin.. Hope you all had a good weekend mindy

merril, Dr. Stillman(cleveland Clinic) recently started me on Co Q10 150mg a day. and Vit B2 400mg a day. It's been about 2 wks now and I have felt worse. Rapid heart rate, anxiety...really bad at night. I have hears great things about it as well..but so far just getting worse. It's so hard for us to tell what does what to us with all the med we take. I am up to 25 pills a day... how crazy!! Sometimes I wonder why I take them when it seems as if nothing helps. Have you ever had any experience with Ritalin?? I've read some good things about it and considering asking him about it best of luck to you Mindy

Nina and others, Just simply amazing. We could really change the way the world views us with these. I am constantly wowed with all of your knowledge and abilities to make life better for us. Thank you from the bottom of me heart!!! I have spread the word and I and my family and friends will wear ours proudly!! Mindy

Tearose and Emily, Thank you so much for your caring thoughts. It's so wonderful to have a team of support. I had a long cry yesterday and I have to say I felt much better. I did color my hair and I guess you could say it's the new me for awhile. The most amazing thing happened yesterday. After having such a depressing day I recieved a card in the mail, from a lady I have never known. It was a card encouraging me that those around me are praying for my health...etc. Well I asked the whole family and nobody knows her.... how cool is that. It made me feel so wonderful that someone that I don't even knows is thinking about me. Thank you guys for your support.... today is much better Hugs Mindy

Wow Tearose.. thanks so much for your advise. Maybe I do need to do something for myself today. Maybe I'll color my hair.. a change always makes me feel better.. have a good day

Hi guys, So sorry I haven't been on lately. I've had some pretty bad days. My emotions are all over the map right now. I need your help. Am I just feeling this way because it's the holidays and I'm not able to do the things I want to do or what?? I can't decide if I want to cry or scream anymore. The weather outside is just plain yucky... I don't know why that matters, I haven't been able to go out anyway. Help I need some encouragement right now. Dr. Stillman is admitting me to the Clevland Clinic after Christmas for a few days of observation. When I went to my appointment with him I said "I have packed my bags, I'm ready to stay... I need you to see what is happening to me!" Don't you all just want them to see just how bad it gets? Well he thought it was a good idea and said he wants to do it after Christmas so that he can be with me the whole time. I was very satisfied with that. By the way sorry I haven't responded about the angels. I'm probably going to have to take your orders after the holidays. (Sorry I know some of you wanted to give them as gifts) My husband and I are making gifts for our family. I have a friend form the meet others program that is going to help me work on the angels. On a positive note, Michelle I want to say thank you to you. I have a new wonderful friend through your meet others program! She lives about ten minutes from me. We haven't met in person but we talk on the phone all the time. I feel like she is my twin. We have so much in common it's just great. So thank you. I reccomend that you all try to meet the others if you haven't Mindy

I second all of that! I am so thankful to have found all of you. This has been a very rough year for me. I'm thankful for all who have provided encouragement and support. Yesterday I decided to make everyday a thaksgiving. Sometimes I get so frustrated that I fail to notice the gifts I have in my life. Bless you all!! Mindy

Yipeee! Thanks Michelle... Boy have I missed you all. Its so hard to read your stories and not be able to provide encouragement.. Mindy

I finally have pictures of the angels. I would like to put them in the Faces of DINET site. How do I do that?? thanks Mindy

I need to get a BP and heart rate monitor. Do you all have any suggestions on a good one. Or where is a good place to buy?? thanks Mindy

I've been on Zofran and Phenergan for over a year now. They say that Zofran is the best and strongest med for nausea. They use Zofran for cancer patients going through chemotherapy. Zofran works best for me...hopefully you also. Good luck. I know how you feel. tanke care mindy

I will have someone with a digital camera take a picture this weekend. Nina I'm not sure how paypal works. If you give me someinfo I'm sure we can do this. I guess it would work best like this... e-mail me at melindaary@yahoo.com and let me know how many you would like, colors are.... red, gold, copper, silver, green, blue, white and black. Also let me know if you would like it to be an ornament or a pin to wear. I will try to get a pic up soon. thanks for all the support. love to all Mindy

Well I just wanted you all to know that the angels I am making are selling well. I am charging $4. Today I helped my mom with a craft show and I brought in $40 towards our foundation and a friend of the family wrote a $50 check towards the foundation. So today the total is $90 for our foundation!!! I hope you are all as excited as I am. Each angel came with a description of DINET and info on how to donate or learn more. I'll be sending a check soon. Yeah for us. spread the word. thanks Mindy

I just have to tell this story to put a smile on some faces out there. We have a dog named Hercules. He is a three year old Boston Bulldog. Lately I have not been feeling so well. Hercules knows when I don't feel good because he will not leave my side. Usually he goes about the house minding his own business..sleeps where he wants..ect. Well it's so funny how they know things and can sense illness. When I am sick he will lay by my side and give me kisses or snuggle on me. I think it the sweetest and most amazing thing in the world. Does anyone else experience this with your pets?? If you don't have a pet you might want to consider it. It has been very theraputic for me. He brings me so much joy and always makes me smile. Mindy

Wow Amy. I am so sorry. This is really a tough one. I think that the toughest time in my life and in my marriage was fearing the unknown. It is sooooo hard to cope and live when you really don't know what you have or are dealing with. I am very fortunate my husband is wonderful with this situation, but we both have had to work really hard to keep our relationship good. This disorder can destroy a relationship (as Dr. Grubb would say) You need to erase your old life and start a new one. What may have been a fun activity for you now may not be possible. If your husband love you and I think he really does... he will help you with this. Let me tell you how we do things in my house. We have decided to start working on crafts together, we read together. We talk and express our feelings about this all the time. There have been many nights when the two of us have sat on the floor and cried and screamed because we were so mad at whats happening. Let me tell you, it really helps. Every week we have "date night Wednesday night" If I am feeling well we may go get something to eat. If I am not feeling well we may rent a movie or play a game. We love games. All that matters on that night is that we enjoy in eachother. That is what you need. What you really need to do is share your fears but also share your hopes. None of us have a clue why we have been dealt this hand. But you know what they say when you are given lemons make lemonade. Trust me it really takes a while to gain a different perspective on life. A great book you might want to read is "When bad things happen to good people" it has helped me more than I can tell you. I wish I could help you more, but you just have to trust in your relationship, confide in eachother, and keep in mind that things may always turn around for you. Best of Luck Mindy

Here is a link that I found. http://wire-sculpture.com/patterns/jewelry...ypattern114.php They are a bit different than this but it will help you get the idea. I am making them out of red, gold, silver, blue, green, and copper wire. enjoy

Alright I rounded up the materials to make the tags. Great Idea Emily!!!! Here is what they will say. Thanks for being an angel. This was purchased in honor of your caring and half of the proceeds will go to benefit The Dysautonomia Information Network. DINET raises awareness of autonomic nervous system dysfunction and promotes dysautonomia education. I am going to stick with $3. Sounds affordable. I guess I'm going to have to get busy. Thanks all of you for your ideas... this will be great!! Mindy

Thanks for all the responses. I am so excited about this. I've been up all night making these angels. It's so much fun to do now that they really will mean something. I will have my sister take pictures and send them to you all. I'm thinking three dollars.... let me know what you think. It cost me about $1.50 to make so I think thats a fair price. I am going to contact my church today I know that they would love to purchase them. They pray for me all the time. Well I will keep you posted Thanks a bunch Mindy

I've been making jewelry for about a year or so. I've been doing alot of work with wire lately. Well anyway I have made these angels and if I do say so myself they are pretty cute. I had this idea that I should sell them and half of the profits will go to our foundation. I think this angel should be symbolic. Let me know what you think, or if you have any ideas.... Thank You Mindy

Do you think we should send him something?? Lord only knows how he has been there for us?? Let me knoe what you think I would be happy to do so. Mindy

Boy have I missed you all!! My husband and I have moved into this dinky apartment and had no room for a computer. He insisted that I need to be back in the support group so we finally found room. We had to leave Columbus and move near my family due to my illness. The POTS is no better. I've been on everything and no luck so far. In August I got a blood clot in my leg. I was in the hospital for 8 days. My leg is still huge. They say that the swelling may never go away. It's been a horrible summer. I finally got in to see Dr. Grubb. Wow what great guy. He spent 4 hours with us. So now I see him and Dr. Stillman (cleveland Clinic). I guess you can't go wrong with two great doctors. I'm in the midst of filing for Social Security Disability.....sure soounds like it's going to be a long haul. Here's a question does anyone else have this problem...? Sometimes my hands feel like they are on fire. Everyday I have to put an ice pack on them. It's really uncomfortable. Well anyways.... I missed you all Mindy

Hello all, It's been awhile since I've visited. Unfortunately My husband and I had to sell our house in Dublin and move in with my parents. With me not working and the threat of his job being cut we just couldn't take the chance. How many bricks can be thrown in your path.. ya know. We moved to Fostoria where my husband found a wonderful job (praise the lord). Now its just a matter of getting on our feet again. We have not even been married a year and I think we have face more than most normal couples face in a lifetime. My POTS has really been taking a turn downhill lately. I have been so scared. I have no control and no warnings anymore. The main problem is that my parents really freak out when things get bad. As some of you know the best way to treat us is not to baby us. How in the wor;d to I explain to them what is going on and how they should deal with it. I put myself in their shoes and it must be horrible to watch your child go through this but I need them to calm down. My husband knows exactly how to handle my spells and he has even tried talking to them, but it has not helped. So any advice would be great. thanks a bunch Mindy

My husband and I have to leave Columbus and move in with my parents for awhile. Times are really tough with my sickness and one income. I hate to leave my primary doctor here I absolutely love him Thomas Hospel. He has been by my side through this whole ordeal, and we all know how much that means. Good docotrs are hard to come by these days. We have really had to make some tough decisions lately I'm leaving all my friends and my husbands family... but my parents are such a support system to us right now. He found a grest job there so he is really excited. He will be making more money so it's for the best. Does anyone know of any good family doctors in Findlay, Tiffin ? Thanks Mindy

Welcome to the group. You are not alone. I feel as if I have just read my own life story. I also found my pots diasgosis throught migraines at the Clevand Clinic. I just got over a four month migraine....horrible!!!! Dr. Stillman is the head of neurology at CC you should try to get in to see him. He is just amazing, and truly cares. Best of luck to you.