Ernie Posted July 14, 2008 Report Share Posted July 14, 2008 My dear friends,I have finally found a researcher who is willing to test my familly to find which genetic mutation we have!!!!!!!!!!!!!I am the matriarch or as NIH called me the Honeybee Queen. I will have the recruit from 30-50 of my family members to participate in that study.Part of my job is to convince my extended family that they have the disorder and to accept to stand for 2 hours of until they faint or almost faint. I am a therapist - not a salesperson. I am freaking out at the idea of convincing that many people to join the study. I also have to resolve family disputes and miscelleneous other problems. It is a huge responsibility on my shoulders and I am willing to take it for our common welfare.I have such mood swings when I am under pressure that I am afraid to sabotage the study by being agressive with the main researcher or some of his team members. When I have adrenaline surges I just can't control myself. I have to be at the testing lab for all my family members. Tomorrow my sister and my niece will be tested. I am very very very very protective of my family. I have gone through so much with doctors that I don't accept any crap for my family.So my plea to you is to pray or send postive thought for me and my family so that all this research goes well and that the researchers find which mutation we have that causes the syncopes so that we can help science and you guys.It will take from 1 to 2 years before we get results.Thanks for your support.Love you all. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 15, 2008 Report Share Posted July 15, 2008 Hang in there Ernie, I'm sure that many of your family will participate. Maybe you could ask them to do it in your brother's honor? (and their own, of course). I know that you've worked hard for this.Nina Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 15, 2008 Report Share Posted July 15, 2008 good luck, please don't push yourself TOO hard. Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 15, 2008 Report Share Posted July 15, 2008 Dear Ernie,Thank you for sharing about this opportunity you and your family have. That is wonderful that there is a researcher who is willing to do tests to find the genetic mutation you all have!!! I will be praying for you during all of this. I'm sure it will be a tough road. I pray that your family members will be willing to join in the research, and that you will be able to find the answers you need.Hang in there and please keep us updated with the research progress!All the best,Rachel Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 15, 2008 Report Share Posted July 15, 2008 Well Honeybee Queen, you sure have worked hard to get to this point! I know you can find a diplomatic way of finding the words that will encourage your family to participate. Use that Bee image to help you! Use the honey not the stinger to get them to realize that they will be helping future generations of your family and many other non-family members probably too.Of course I pray for you and your family, the researchers too. I think there will be so much to be done that the two years will pass very quickly.best regards,tearose Quote Link to comment Share on other sites More sharing options...
momofsara Posted July 15, 2008 Report Share Posted July 15, 2008 Ernie--- I will be sending my best wishes and sincere hopes for you and your family during this time. Just take care of yourself and dont get over exerted. We all care about you and wish you much success in this. Hugs and prayers--Susan Quote Link to comment Share on other sites More sharing options...
sheba Posted July 15, 2008 Report Share Posted July 15, 2008 Way to go Ernie!!! Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted July 15, 2008 Report Share Posted July 15, 2008 That's great news - well done for persisting.Perhaps you could write a letter to send to each member of your family. I know it sounds formal, but it would help people less familiar with the dyautonomia issues to understand the study's importance and to take in the information in their own time. You could always follow it up with a call when people are calmer and less emotional.Good luck! Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 16, 2008 Author Report Share Posted July 16, 2008 Hi,Thank you Nina, Pat, Rachel, Tearose, Susan, Cathy, and hopefulcase. I appreciate very much your suggestions and support.Today I spent 8 hours at the hospital for my sister's and my niece's tests. I am exhausted. They both passed out during the postural test. They gave their DNA. So far, we have 4 family members who have given their DNA.The doctor and the nurse did not want me in the testing lab and I told them that I was staying with my family while they were being tested. They agreed to let me stay. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 16, 2008 Report Share Posted July 16, 2008 Ernie,Wow! Sounds like A LOT of hard work and time! Congratulations on having them decide to research your family and hopefully help find an answer and in turn a better more individualized form of treatment. Sounds quite interesting, seeing it from the inside!I hope that it continues to work out well! Don't overwork yourself too much!!!Sending you and your family best wishes and positive thoughts!Keep us updated! Quote Link to comment Share on other sites More sharing options...
Michelle F. Posted July 16, 2008 Report Share Posted July 16, 2008 Hang in there, Ernie. You can do this! Michelle F. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 16, 2008 Report Share Posted July 16, 2008 Good luck Ernie and thank you for persevering. It will help all of us. Quote Link to comment Share on other sites More sharing options...
corina Posted July 16, 2008 Report Share Posted July 16, 2008 dear ernieyou are an example to so many people. don't be too hard on yourself. although i know about your struggles (moods), i also know that you are a very sweet and caring person. it is very courageous of you to be there for your family, as you have your own problems as well. you have worked so very hard to find doctors that will work with you and your family. doing that you had a lot of ignorant doctors on your path and i can imagine you want to keep your family from that. i admire you ernie (i think i told you before ) you are a big help in learning about dysautonomia. thank you for that.love,corina Quote Link to comment Share on other sites More sharing options...
Maxine Posted July 17, 2008 Report Share Posted July 17, 2008 Ernie,I'm so very proud of you for all you have done for research--------AND your family!I'm chiming in late because I have a lot going on, but wanted to let you know I'll be praying for you to get though this research project.Maxine :0) Quote Link to comment Share on other sites More sharing options...
lalalisa Posted July 17, 2008 Report Share Posted July 17, 2008 Ernie,Thanks for sharing about this exciting and yet difficult process you are going through. I will pray that your family will be willing to help. I am so impressed by your perseverance and determination and I'm sure it will pay off. You are an inspiration to so many!!Take care "Honeybee Queen" =)Lisa Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 17, 2008 Report Share Posted July 17, 2008 Ernie,Each of us adds a drop into the bucket of information, and you and your family have just turned on the tap! Bless you and your family for suffering through this for the information that will be gained from it! May you have peace and strength!Jennifer Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted July 18, 2008 Report Share Posted July 18, 2008 Have you looked into mitochondrial disorders? I ask because we suspect that my daughter has a mitochondrial disorder which she got from me. My symptoms are dysautonomia, but hers are more neurological. The thing about mito disorders is that they manifest themselves differently, even in the same family. The test is a live muscle biopsy and the results come in a few months instead of years. Just wasn't sure if it is something that you had considered yet. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 18, 2008 Report Share Posted July 18, 2008 Good job ernie, this is a hard thing to do, but i surely admire you for all you, not only for your family, but for all of us! You are always a honey! morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 19, 2008 Author Report Share Posted July 19, 2008 Hi everyone,Thank you so much for your support.Next Wednesday I have two more nieces that are being tested. It will also be a long day. One of them is a nurse!I just got up from sleeping 14 hours. I finally recuperated from my week. I had appointments at the hospital every day and had to wake up every day early so I was pooped out.My nieces have 6 hours round trip to drive to come an do the tests so they will stay at my place as well. They are staying for 3 days because the testing is very exhauting. Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 19, 2008 Report Share Posted July 19, 2008 please maintain a reasonable pace. That may not be so easy but I think you must.Don't you? Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 19, 2008 Author Report Share Posted July 19, 2008 Hi AprilI have not been checked for mitochondrial disorders. No doctors have done a muscle biopsy even if my endocrinologist have asked a neurologist about it.Hi PatI will do my best to pace myself because I don't want to crash. I have worked so hard to get where I am. Thanks for your concern. Quote Link to comment Share on other sites More sharing options...
Tessa Posted July 19, 2008 Report Share Posted July 19, 2008 Ernie! How great that they decided doing this test!!! Well done.You can do it. I am sure.Looking forward to seeing the results.Take care and take it easy,Love,Tessa Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 22, 2008 Report Share Posted July 22, 2008 your nieces are coming tomorrow? Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 22, 2008 Author Report Share Posted July 22, 2008 Hi Pat,My nieces are arriving any minutes now. They left Ottawa at noon ant it is a 3 hours drive here. I am so excited. I am preparing a good supper for them.The test starts at 7:00 a.m. tomorrow and might take 8 hours. I am so nervous. One of them is a nurse and as been fainting since the age of 9 years old.I have so much responsibility on my shoulder to take care of al my relative but at the same time it is very challenging and satisfying. I love my family and I would give them the moon! or the sun!!!! Quote Link to comment Share on other sites More sharing options...
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