Roselover

Em, please tell Melissa I have been praying for her and she will remain in my thoughts and prayers. And that I send a big hug to her! ~Roselover

LOL! Nina you crack me up too!!!! When I take Vicadin I get very happy and chatty. If ever I have some good moments and begin getting silly or chatting, my kids now tease me and alwasy ask "Are you on Vicadin?" LOL! Our poor little sunfish.... I love her so much! Thank you so much my dear dancing light for updating us! Melissia, if you're reading this, Melanie is praying for your LOTS! My husband just gave a message last weekend on trusting God and he reminded me that God's agenda is more glorious than we can imagine... I sure wonder why he's allowing you to go through all this, but I guess we have to trust and pray and hold on. I wish sooooooo badly I could come and visit you!!!!!! High Five to Nina, wink wink to Emily and a big hug for Melissa. ~Melanie

NO - you are not alone. In fact, Vanderbilt recognizes that we have varied sleep problems and are currently developing a sleep study. You might consider getting a sleep study - but sometimes it's like every other doctor we see... they don't understand the autonomic cuases of our problems. However, there are many sleep disorders that they could diagnose that might help you, so you might want to look into it! ~Melanie

Hi Ann, At this point, I'm not doing very much about it. Vanderbilt had no info or advice in this area. Some people do need to self cath. I had a urological study to make sure I'm not holding in urine and hurting my bladder. At this point though, it's mostly just discomfort. Sometimes I have difficulty urinating and have to go to the bathroom several times in a row. Sometimes I am just having spasms that cause a little drip. When this is most uncomfortable I take Levsin. I hope it doesn't get worse, but I know it does for many. I would sugget you do a search for bladder or urodynamic study. You might find some good info from the past as I know many here do have to self-cath. ~Melanie

HUGE SIGH OF RELIEF!!! I felt so helpless and am so glad to hear this news!!!!

Wareagle, that's an excellent suggestion. When I read your post it reminded me of a friend who is a drug rep and said the same thing. I'll try to check with him again about how you would go about this and let you know if I learn anything Em! ~Roselover

Oh Em, I know what you mean about the Ambien. My insurance won't give me more than 14 a month!!! Frustrating! But I now alternate it with clonazepam and that is working out great for me. I didn't have any withdrawl symptoms from either one when I stopped them for Vanderbilt. But, my sleep disturbance did come back! You may not have added to the snail mail count, but all those beautiful e-cards you sent me were very appreciated! I loved getting those from you. You are such a sweetie! Thank you everyone for your support and welcomes back "home". I'll try to use what I've learned in the things I post in the coming months. I figured out I was awake for 24 hours yesterday. Can hardly keep my eyes open now. TTFN Melanie

Hi everyone! I am home from my two weeks at Vanderbilt. I know there are constantly questions here on the forum about visiting Vanderbilt and Mayo and Dr. Grubb. So I thought I'd try to share my expereince for those who want to know more about Vanderbilt. First of all, I went as a research patient. If you go to their website - I've posted the link here - Vanderbilt - you can dowload an application for acceptance as an inpatient. In talking to the Director, I was told that she is unable to answer most phone calls of inquiry, but if you mail this application in, you will hear from her in 2-6 weeks. So, after mailing my application, I received an email inviting me to come as an inpatient. I sent my medical records and we set a date for my arrival and departure. If you go as an inpatient research patient, anything that falls under their research protocol is free (covered by their grants.) If you require or request tests or treatments that are not within their protocol, they will charge your insurance. After my two weeks stay, I now see that it's very important that you go with the right expectations. We must understand that they are still learning about us. They don't have magic answers, but they are very interested in understanding our symptoms and very committed to finding things that will help us. I found that their main focus with me was on HR and BP issues. They had little information about the bladder and stomach problems I also have, but were very interested in learning and possibly expanding their research in these directions in the future. I had a great discussion with Dr. Roberston about the stomach problems. They are also just begining to develp research in the area of sleep disturbance. Their research protocol changes periodically. As they learn and get the grants, they focus on different meds and procedures so someone visiting six months from now, may have a slightly different slant in their prcedures than what I have. They also said they may like to have me come back in a year or two or three as they understand our symptoms can change and their protocol will change. So... here's what I experienced in this visit. First of all, they treat you extremely well. They really understand and care about the patients symptoms and comfort. I had a nice private room. I am so glad I brought my computer. They have wireless internet in all the rooms so I was able to keep in contact with my family on a regular basis. There is a strict diet, but the dietician was wonderful. They adapted to my low fiber diet very well. She checked in with me daily to see how the food was and were very willing to make changes as I needed. The food was very good and always hot! (I've never had hot food in a hospital!) The nurses are fantastic and take the time to really know you and I found that they really helped me not feel too lonely! Once a nurse took me on a short walking tour of the building and another time when I was feeling really cooped up, a nurse took me outside for a bit in my wheelchair. As is normal for me, they had a hard time getting an IV placed. So I ended up with a PICC line. They put it in at the main hospital and were very quick and professional and able to deal with my Lidocaine intolerance. I had several days that involved different types of autonomic testing, blood volume testing etc. But most of my days were medication trials. On these days, I was awoken at 6:00 for Orthostatic vital signs. (They take your BP lying twice, 5 min. apart. Then you sit with BP and then stand for 5 min if you can.) Then I had breakfast at 6:30 and then I had to wait two hours after I finished breakfast to start the med trials. So these usually started about 9:00, sometimes a little later. For the med trial I had to sit in a comfortable chair for 30 min and stand for 10min. Anytime I had to stand they were very understanding and supportive of the fact that I might not be able to stand that long. Then I took the medication and for the next four hours, I would sit for an hour and then stand for 10 min. Throughout this whole time they had a machine taking and recording my BP. At the Baseline stand and the 2hr and 4hr stand I filled out a symptom list and rated each symptom. I also kept track of this in my journal along with anything else I was feeling. After all the med trials, they gave me a list of the meds I had tried and on which day. I was able to compare this to my journal of how I felt and then I discussed these meds with the Doctor. They were willing to send me home with prescriptions for the meds that worked best and I can email for more help if needed in the future. I had the priveledge of meeting all three of the specialists. I met Dr. Biagionni the second day I was there and there wasn't much he could tell me yet. Dr. Robertson also came by and talking quite a while with me. Mostly I saw Dr. Raj who I liked very much! This long visit is not a cure all. It did, however, help me understand more specifically what is happening in my body and how I might be able to find a little reduction in my symptoms. I also believe their research and work in understanding dysautomias is going to be very valuable to all of us in the future, so I am glad to have been a part of moving that forward. If you have questions, I'll try to answer them, but I'm back on dial-up so it might take me some time to get back to you. I am also exhausted from the travel and extremely glad to be home and back with my family!! Thank you to all of you who wrote to me! I felt so loved! I was told that I won the award for receiving the most mail!!!!! ~Roselover

Melissa, You have been on my heart and mind and in my prayers girl! You amaze me! The card you send me at Vandy really touched my heart and lifed my spirits with your care and spirit even in the midst of what you're doing! I love you!!!! So glad to hear your updates and I will keep praying that you have some positive results! They are very interested in what you're going through at Vandy so when you have the energy and time sometime in the next couple of weeks, you should email Bonnie. (BTW - thank you so much for your "Vanderbilt Chronicles"... I'm so glad I went! I got home at 2:30 AM last night and am exhausted. My husband flew out for the day to get me home and I'm sure glad he did!!! I'll be posting my own version of your Vanderbilt Chronicles so others will know what it's all about too!) So glad you are keeping us up to date! Call me if you need to talk!!! Your friend, Melanie

This is such an encouraging post! How exciting! I'd love to hear the music and read the song lyrics too! Maybe you can make a CD one day! I'm sure many of us would enjoy that. ~Roselover

Oooo this sounds scary and uncomfortable. Sorry, don't know anyting to help you, but you have checked in with your doctor about this haven't you? I'll be interested to hear if others have this problem. ~Roselover

Bec, I really hope your appointment goes well today. On top of all the difficulties we have, dealing with a not so helpful doctor is not what we need. You wil be in my thoughts and prayers this morning. ~Roselover

Fall would be a much better time for the auction. Ebay is slow right now and the July 4th week seems especially slow. In the fall, people are thinking Christmas. Michelle, did you think about doing the auction under the charity auctions? Maybe help the auctions be seen a little more. Don't worry, it takes a few years for aucitons to grow in reputation. I'll donate another painting when the next auction comes around. Also, keep your dinet account open on ebay. If everyone who bought this time around will post + feedback, it'll help with bids and amounts next time around. ~Melanie

Dayna, your first post could have been words out of my own mouth!!! I HATE (YES I'M YELLING) NAUSEA! It totally shuts me down from life! I've tried all the normal prescription meds you've all mentioned. My insurance finally approved some Zofran after three hospitalizations due to weeks of no food and little fluid intake. But it only helps sometimes. The thing that has been the best for me is Domperidone. So far, it has been my miracle pill for nausea! I still occaisionally get bouts of it but they are not as bad or as long. When one seems to hit, I keep taking my domperidone and switch to liquids for one day and full liquids for another day or two (pudding, creamed soups etc.) Then I'm almost always back to normal in a day or two. Dayna, remember that it's not the activities that your kids will remember and cherish about you. It's the love they can wathc movies all day long and as long as they know that they are loved and important to you they will be well adjusted! Focus your energies on making sure they feel loved and don't worry so much about what you have energy to "do" with them. Sonotech had some great ideas - I love the treasure chest idea!! There's also a med used for nausea in cancer patients that they are testing at Vandy. I'll try to find out why they are including it in their medication trials and get back to you. ~Melanie

Hey Em!!! So nice to hear from ya! I know - you're in the same boat as several of us "regulars" - we seem to be going through a bump in a road....I say bump, because I hope and pray it flattens out for all of us soon! YES! I have been PJ shopping! My sweet daughter who is 16, took me to her favorite new store and pushed me around in a wheelchair and helped me pick out some fun and very cute PJ's. I expect I'll stay in them a lot since there will be no hubby around to "impress" :-) You are very lucky to have such a sweet Mom you know! I envy you. Give her a big hug from me for taking such good care of you! I had a bad flare up of my stomach on Saturday.... almost as bad as when it put me in the hospital. You know this Vandy trip was schedulaed last Oct. but cancelled because I was in the hospital! Sunday was the last day I could take any meds so I was able to take my Zofran and Vicadin on Sat and yesterday just the nausea stayed around. I feel better today.... so I'm crosssing my fingers it was a flare and I will make it through. I'm sure the nerves don't help and the energy it takes to pack... I've been working a tiny bit each day for two weeks now! Today and tomorrow I will spend with my 16 year old as the other two are off for camp. We have a tradition of watching as many musicals as we can this week. She just got her drivers liscence so she's actually a little excited to have mom leave and be responsible to drive around town to spend time with friends! Thank you for all your good wishes and your prayers! ~Melanie

I'll buy somewhere between 1 and 4. Sorry can't narrow that - it will depend on what they look like. I will buy 1 Adult med for me, and if three more probably all Adult smalls or meds.

Rhonda, I'm going to Vanderbilt next week and this is one of my big questions for them. I too have weakness on the left side. It's both arm and leg. My MRI's are all normal. My PT says I have been compensating without realizing it - causing lots of my pain. She says my pelvis is now lopsided from the compensating possibly affecting my blader and bowels too. So I'll let you know what they say about this and it's connection to dysautonomia. Sorry you'll have to wait a couple weeks to hear what I learn though. ~Roselover

Thank you so much for your support everyone - esepcially as I haven't been posting much lately. I do make it here almost daily and try to respond to those that I have insight in. But you all remain close to me in heart! Julia, When I traveled to see Dr. Grubb, the one thing my DH and I did before heading home was spend some time in the Toledo Art Museum - on Dr. Grubbs advice! It was FANTASTIC! I was just enthralled. We had limited time and never even got to some parts of the Museum so we plan on visiting again on our next trip to Toledo. BUT - I could have sat in front of that Money for hours! And of course all the other wonderful paintings. Wow that was fun! Thanks everyone for being willing to send me mail. That will be so nice! Luv ya all! ~Roselover OH- and Corina - I hope you have a beautiful time in France!!! Don't forget to take pics for me to paint!!!

Hurray Lauren - keep at it - but don't let it kill you emotionally. We have to face that we just don't do things like we used to. That doesn't mean we don't do things.... it just means we do them differently and sometimes it's a struggle to find out what that means. I'm clapping my hands for you for continuing to learn how to do what you want to do with the body that you have! ~Melanie

Hi everyone, I've been "lurking" - checking in reading a few posts and then running. I've been in an escape mode lately. I hate this illness and the fun I've been stripped of, and so I've been seeking for fun that helps me ignore this DD. (if you don't know what DD is put disease with the second D and think of a strong description for the first D ) Actually, my escape has been very fun - I've escaped into a cyber space art world. I'm selling art on my website and on ebay and another auction type art website as well as chatting and learning. I actually really feel at peace with this DD - and I hope the peace I'm finding is real and not just an escapism that doesn't last. HOWEVER - though I refuse to spend my life focusing on this DD - I want to do all I can to live at my best level. So, after a long agonizing two weeks of debate, I have decided to go to Vanderbilt for their two week study. I leave on July 5th and will be there two weeks all by myself. I'd love it if any of you would write to me and tell me about yourself or write me your favorite poem or words to a song or something like that. Melanie Pruitt c/o Bonnie Black Research Coordinator Autonomic Dysfunction Center Vanderbilt University Medical Center AA3228 Medical Center North 1161 21st Avenue South Nashville TN 37232-2195 I've received info on all the tests they are going to do and I am going to find out a lot that I don't know for sure and I'm glad to be a part of what they will learn. I am scared though of the travel and the long testing days. On the possitive side, I actually get to meet one of my cyber art friends while I'm there. Here's what I figure comes next.... I either come home from Vanderbilt with a new med regimine to try, or we have proved that none of the meds work for me.... so I will either try the cocktail of meds they recommend or I will begin Procrit. (I have tried most of the meds they are testing- but the tests are much more extensive than just medication trials!) If Procrit works - whoooooooopeeeeee! If not - I have to learn to live with this DD contentedly if I'm going to have any life at all. My art plays a role here I am sure - but I know I have many more things to learn. My immediate path is medical, but my bigger path is learning to really "live" with this so maybe I'll share more about what I learn in the coming months. Maybe my journey will help someone else. Just wanted to give an update since I hardly post anymore. And please pray for my trip and that I can get the help I need in the airports and that I survive the air travel! I wish the t-shirts were ready! Then I could wear mine!!!! ~Roselover

Oh Linda- I feel very frustrated for you! I'm so sorry! I have many of the symptoms you list. Can't really comment on whether they are all a part of Dysautonomia cause I don't know. But I do know that I just started seeing a Physical therapist for some treatment for headaches and I am amazed at how many of my symptoms are coming from misplaced hips and ribs! So just a thought for you to consider. I'm going to paste your list of symptoms and highlight the ones that PT is helping. --Weakness--weight loss, even though I eat every two hours --severe low blood sugar (that's why I'm eating every two hours. I'm still skinny, even though I eat all the time!) --low blood pressure --joint and muscle aches--facial flushing --shaky legs sometimes --blurred vision all of the time! It's so bad at times, I can't read --Other vision disturbances, such as lighting going brighter or tunnel vision --fullness in head --fullness in ears--right eye pain --headache--nausea --dizziness, sometimes feeling as though I'll pass out --severe hunger at times --buzzing in ears--anxiety --low grade fever sometimes --rib pain --chills or feeling hot --clumsiness --smelly urine --tingling, especially in my legs--just feel awful That's a lot of symptoms PT is helping isn't it? Hope this idea helps you! ~Melanie

You should be getting my paintings in the mail soon too. I mailed them on Wed so maybe sat or Monday. Let me know when they get there! ~Roselover (Melanie)

Actually, the majority of the show was not about Procrit - that's just what caught my eye. Most of the story - as morgan said - was journalist hype trying to catch a counterfeiter. The majority of focus was on Viagra and a few of the common cholesterol and blood pressure meds. Also mentioned was Theraflu (I think) - the one used for the bird flu. I guess no one else saw the show.....that's probably good - though we ought to be encouraging our governements to be cracking down on this. One idea is to require drug companies to lable each product with a tracking microchip and then all pharmacies can easily scan and affirm that it really came from the company. I think it was very irresponsible journalism at it's best and I think that's what makes me the maddest (and you all know, I am a gentle spirit who doesn't get mad easily!) So many people rely on their medications and all it did was scare those who are most helpless. Maybe I'll write a lettet to Dateline! Sorry all, didn't mean to make it sound like those taking Procrit should freek out.... we ALL need to be careful! If these drugs can be imported into any country and sold as the real thing we need to be careful. It's not about a specific drug! BTW - I'm in the process of getting ready to start Procrit - it's not going to stop me. ~Roselover

Anyone else watch Dateline last night? I don't usually watch it, but just happeded to turn on the TV and they were talking about counterfeit drugs being smuggled into the US and being sold as real. What caught my eye and caused me to watch the whole show, was when they showed a bottle of procit!!! A woman with cancer died because the Procit she picked up at her pharmacy was counterfeit! What really irritated me was that the whole show only built the case to scare us all! No help, no ideas on how to make sure we aren't receiving counterfeit drugs. They said to make sure pills look right, smell right and taste right - but then went on to tell how perfectly made some of these counterfiets are - so that even pharmasicsts can't tell the difference. I hate shows like this that just scare me and leave me with nothing to do about it! SCARY! ~Roselover

Happy Birthday to you Happy Birhtday to you Happy Birthday dear...(what's your real name????) d4g7 Happy Birthday to youuuuuuuuuuu ! ~Roselover