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blackbirdsings

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Everything posted by blackbirdsings

  1. Lauren, I am glad to hear you are having small improvements each day. That certainly makes it a little easier on you and a little less stressfull. I hope they continue! Going outpatient should make it easier on you. Some of the tests may still be tough. For me being able to leave places and go to a different environment helps, so hopefully you will do really well. Are you going to have somebody come to all the appointments and testing with you? I don't know where you are staying while you are there. One of my favorite hotels is in Nashville and has outstanding service. I was so sick and felt so horrible one of the first times I was there. Their room serivce goes 24/7 and was great about fixing me special meals, since I was on a limited diet for several days. If you need info on the hotel let me know. Good luck and let us all know how it goes! I so hope they find something to help you :-)
  2. Hi Ernie, Thanks for your comment. It would have been nice when I went there that not everybody has a positive experience. I remember talking to you about your time there, and it was worse than mine. I also, wouldn't go back there even if I was paid. If people are even in that area and need medical help, the other two hospitals are wonderful and even know about POTS. I do hope Lauren has a really good experience there and gets the helps she needs. I just think people should know both sides going into a situation, especially when they already feel bad.
  3. I am sorry to hear about Vanderbilt and you having to wait to go, when you need help days ago. That has got to be very frustrating and upsetting to you. I hope things get better soon and you get some improvement. School...can you take a semester off OR do a class from home via independent study or online, etc? That is how I ended up doing college, and it helped to be able to work from bed on bad days. I got to decide when I would do the work and for how long. The school was understanding if I was sick and needed extensions. That might be a good option, so you at least have something going on and don't have the pressure of having to go to a campus. My next comment may not be appreciated, but I believe it is important to be honest about medial experiences. I got in at NIH and Vanderbilt a few years ago. I went to NIH first and had a good experience and decided to go to Vanderbilt for a week in house. I had a truly horrible experience, and there is ALOT that went on that was not positive. I did have a very nice nurse on one shift, people were okay to deal with, some were not (you can always request a different nurse-you have that right!). There were things I was not told up front, stuff they wanted me to do to stay in the study that wasn't told to me until after I was admitted. I have multiple food allergies and wasn't able to adhere to their diet and they wouldn't accomendate. I cried most of my stay, was in great physical pain, and they were not willing to work with me or do anything further. I left far worse than I arrived. I know several others that had bad experiences there, BUT I also know lots of people that have had very positive experiences there. I am aware that from complaints my family made about my stay, etc. that the program has been evaluated and things are supposed to be a bit different now. I hope yours is a very positive visit, try to find out everything before you get there, and don't put all of your hopes into getting all better there. That's not reality though they should be able to help you. We have since found out my POTS is so different because it is caused by lyme disease and should improve and go away when my lyme disease is completely treated. That wasn't know when I was there, and I presented much differently than the other patients, despite positive tilts and sycope. The other patients on the floor did nothing but stay in bed all day, watch tv and eat. That's not how I am, and it wasn't a good match. I went back to NIH several more times and was very happy with everything there. So if Vanderbilt goes great, hooray! Otherwise, know there are other options out there, and keep your hope going! Good luck!
  4. Have you been tried on anything other than Florinef? There are LOTS of other meds out there, not tons, but certainly more options than just Florinef. I had a rough time with Florinef and I did much worse on it, and with lots of side effects. Works for some, others it doesn't. Are you continuing with extra fluids, salty foods, and all those little things? Any little thing you can do is better than nothing, until you can get to a better doctor.
  5. That doesn't sound right to me. When I was in college I took my exams outside of class in a room with a cool temp, no noise, could put legs up, have food/water, extended time, etc. We did have to have a doctors letter stating that 74F is too warm for me, and I needed something in the low 60s. It had to be VERY specific and once I had that, I got what I needed. Maybe mention your lawyer will call them, or the Americans With Dissabilities Act....those things usually scare them a bit and they realize you mean busineess. Has your daughter passed out in class? I came mega close several times in a summer class and it scared the professor and entire class. After that, if I said I felt bad, needed to be home in air conditioning, etc. there wasn't a problem with it. A student pointed out to the professor that if I passed out in class after I had said it was too much for me, the professor and class would have to provide emergency medical support for me. None of them wanted that. Maybe you all need more specific doctor notes. Let us know what happens!
  6. The prep is rough, but you can get through it. Try to get scheduled first thing in the morning and discuss why. Thay way you get on an IV sooner, and don't have to go as long without fluids and food. The hospital mine was done at kept me on the IV until I felt "better" and was able to get fluids and some crackers in me without getting sick. We waited until I was coherant and I no longer felt dehydrated and had color in my face. I went home and slept. I was told I could stay for as long as I needd. The prep and the thought of what they are going to do was the worst for me. There may be a little bloating but it goes away within a day. They medicate you well, and I don't remember a thing from mine. Good luck!
  7. I have a very soft spot for books in general and a horrendously fluffy, soft spot for old books. I have an insane amount of books, but they keep calling me and I love the softness, and care and how elegant old books are. Today books are so mass printed for the most part. I love the specialness of an old book, the leather cover, the binding, how they do gold on it, and just tons of other things. I shall stop...Thank you for sharing the exeperience of that book with us. :-) Very happy for you!!! It's awesome that you got to just sit with the book like that. Some places make you go into a "clean" room, no pens, water, etc. allowed in that room. Than you have to wear special cotton white gloves, sit at a special table, etc. Not as comfy as what you got to do!! Let us know about the other book when you get to see it.
  8. This is a great idea, but if it gets done I wanted to add this suggestion for consideration. I have been researching another heath problem and looked at another forum. They have a list that has TONS of information, links, etc. but due to the way its organized, it's really hard to get through. When you feel bad to begin with, and added issue of researching what is going on with your body, its nice to be able to go straight to the info. you want, and not have to sift through everything. I'm not sure if this makes sense...A really loooooong page, or even several pages of info, not well organzied on the internet is hard for me to get through. I would assume the others on here would likely have the same problem, and if it is a newbie they might be a bit overwhelmed too by something like that. So just some way to make it really easy to read, easy to use, easy to get to specific info., in certain topics. Dinet reamins the one forum I find easy to use to read, use, and has the most supportive and informed members that stay focused on why are all here. I read at least once everyday and try to post when I feel I can help and have the energy. Thanks to Michelle, Nina and everybody for keeping this going!!!
  9. Nina-Good luck! It's most important that you love running above how you place. Have you looked into hiring a trainer full time to work with you each week or every other week? Along with getting somebody to do the trigger release that helps you so much. It just sounds like the training support has helped you so much, it would make sense to continue working with experienced trainers so you continue to progress. Do let us know how you do!!
  10. Alot, of not so Dysautonomia educated doctors will insist that Florinef is the only med out there and your only option. It's not and just make sure you remember that! I really like that Nina pointed out Midodrine would be another med to consider. We knew within in one dose that it wasn't the med for me, and the nice thing about it was that I could just stop taking it. It wasn't stuck in my system for a long time, and I knew if I could make it through a few more hours I would be okay. Florinef was a VERY bad med for me. Do a search on the forum for more info. on florinef, because we have discussed it many times. It has worked well for several on this forum. Good luck!! This is slightly random, but there is a bagel shop in Cambridge that has SALT BAGELS!!! I love them, and they are made fresh without preservatives, etc. Those help up my blood pressure with lots of water, etc when I can get them.
  11. I am going to reply to this later on, when I am feeling a little bit better and can provide the correct info. to back what I have to say. I appreciate seeing other sides of saliva testing and I believe there are some really good, legitimate companies out there BUT there are also some bad ones. My testing is being done through a doctor and through a lab NOT through something on the internet. Similar to this is labs that do specific blood testing for things like lyme disease, etc. like Igenex. They are an incredible lab, but people tend to say bad things about them that are not fully informed on the matter. Mainly because they are not a "typical" lab that you are used to and are very highly trained. People just jump to conclusions and assume since they cost alot and people go to them that are very ill, they must be bad. That's really not the case. I find this to be similar to the saliva testing, due to it not being mainstream and common. Quackwatch went through MAJOR legal issues a few months ago. I remember reading the article about it, and will track it down and post a link on here. They had information up on that site that was invalid and just did further damage for people with hard to diagnose medical problems such as lyme and even POTS. I'll post info. later on, but I do not put any confidence in that website. People have varying hormonal issues. Blood tests find big imbalances and check that the you have the hormones. If your hormones are just slightly out of whack and not enough to show up there, the saliva test is good. It checks how your hormones are being used NOT that they are there. I will try to find more info. on this with sources, so we can all learn more about this. I will read the sites against this testing, since it is always good to know both sides. I am also going to post more info. later and if anybody does it before me, please feel free. This is an area that affects my POTS and how I am able to function. When I hear that it has helped others have an improved life, it makes me even more interested. Especially when the stronger hormones are too much for my body.
  12. I am waiting on the saliva kit to test that way. My understanding is that the blood tests just check to make sure it's there, but the saliva can test what the levels really are and if your body is adjusting them correctly. Not sure if I said that correctly or not. My doctor has had alot of success with patients responding well to the creams. I like the idea of the creams, especially after hearing Pooh and Kathy having good experiences with them. I think the pills are too extreme for my body and might be too much for me right now. If for some reason, I don't fair well with the cream, I would re-consider stopping my period for several months, and seeing how I do. Now I think I would like to avoid doing something like that. Finnette-I think the cream will be mixed up for me, according to results and is done through a good pharmacy. After what you said, I will get the lab info, etc. and look them up to confirm. I've not done well with beta blockers or any other meds to help my POTs. What we did find out is that people with Lyme Disease can develop NMH/POTS. I wish I had known this years ago. In my first month of light treatment for lyme, my fainting was reduced. I was fainting everyday, a minimum of 3 faints most days, and on worse days more. Very exhausting! Suddenly it was one faint and now I have pre-syncope, but have only fainted a few times. On bad days I still faint but not as bad, and its no longer every single day. My doctor said having the lyme, affects hormonal levels in females, so with the meds to treat me, and monthly cycles it makes everything worse. I've had some infections lately and have had trouble standing in stores that I can usually do okay in...I explained and they gave me a stool and said whenever I need it to just ask. I'm pretty sure my insurance will cover this, if not it's worth spending the money if it would help me. I have found that insurance will try to keep from paying for some of the meds I will have to go on. If you have bloodwork proving you have the problem, and submit that to them, they will pay. I don't get the insurance junk and them trying to get out of paying for peoples meds when they are sick.
  13. I remember awhile ago people had talked about getting the saliva testing done, and from there if needed a cream is done and you apply it to wrists and it helps your hormones. Can anybody tell me more about this? Has it helped their POTS and your general heath? We have noticed a connection of hormonal problems that are just enough off to make things worse. On top of that my Lyme Disease and co-infections cause menstral cycles and the time surrounding them pretty miserable. So that combined with POTS leaves me feeling horrible, unable to function, etc. since everything is made so much worse. I had a gyno nurse say never to do saliva testing, that its nothing, etc. etc. To do birth control, but that has SO many more side effects and is pretty major. Turns out this office while good is very against doing vitamins and homeopathic types of treatment. I do agree with pills for some things, but if you can manage something with dietary changes, or a vitamin, I would rather do that. Anyhow, I know there are alot of people against this type of hormonal testing and treatment BUT I would like to know if anybody has done this before. Positive or negative? Suggestions or any other advice is welcome. Thank you! We are hoping if we help my body with this, it will lessen everything else. My doctor says it has worked with his other female patients. Thanks!!
  14. Instead of taking a class, I suggest taking a private lesson with a certified, very advanced pilates instructor at least once a week. All of my pilates instructors have gone through extensive training, and also have degrees specific to anatomy, physical therapy, etc. I do an hour with an instructor once a week that is very intense. We have set up various programs for me to do at home the other six days. Take home exercises can be very simple and will help you. Mine are set up so on a bad day, I do very easy stuff that at the worst I can do in bed. Than medium, good, and very good days...different exercises for each days, and I know how to rotate them, etc. I love pilates, its so cool when you get to the advanced moves!!! That is when you get to do super cool stuff, that is using everything you were taught in the beginning!
  15. Not really a "normal" POTS thing. Carpel tunnel was mentioned and there is another thing that starts with an R but not sure how to spell it. This is one of those things, that you do need to go to the doctor for and really have it checked out. Sorry. I hope it goes away and is okay. Let us know!
  16. That *****, especially since you are improving with him. I always use the same massage person and I have a team of folks that work with me on my conditioning etc. I have a head coach and than other people and we rotate who works with me, and it works really well for me. My place is unique with how well trained they all are and they are all trained on how to work with me...nobody works with me until they have sat down with my head person and gone over my history, chart, etc. We have even had people observe my sessions and go around with me and my trainers, so they can ask questions and see how I do. It's no big deal, but you have to have people that know how to work with you and get results. I would ask your therapist if he knows of anyone there that he thinks would do a good job. If so, have them come to your sessions, and work with him some, so they understand your case, and how to work with you. I would also have a back up plan. Driving that far three days a week is likely too tough to do on your own. So I would ask your trainer if you find you do okay with the new person, but still benefit from them, can you come to them once a week. If you get another therapist and they aren't as good, and you aren't getting results, I would make it very clear up front what your expectations of them are. If they do not do what they need to do, fire them, plain and simple. You could also see about spending an hour on the training and than follow it with an hour massage. That might work really well for you, and you sound as if the massage truly makes your life better. Than you can push more in your training and the massage will help calm things down and make soreness less, etc. Also, gives you some recovery folloing the workout before you have to drive. Last option...see about getting somebody to drive you to your sessions if you need to stick with the same person. It's just not worth the time or money, or being bad to your body to work with somebody that doesn't meet your needs. Good luck!! Are you taping your toes? Broken toes are such a pain, sometimes taping them helps. Watch it on the running, so you don't get a stress fracture in your foot.
  17. I have had bone scans and MRIs with contrast. They are both different BUT it does depend on what area of the body it is for, and what medical center it is done at. A few weeks ago I had an MRI with contrast done, and since I am allergic to shellfish, they had to skip using part of the stuff they use to place the contrast directly into my joint. I'm not sure if that makes sense. On a bone scan its typically an injection in your arm, and is about like getting blood drawn. Than you drink lots of water and wait an hour and they do the test. The MRI was alot different...it has a special name but I forget what its called. For mine they took an x-ray, kept me in the same place on the table. Than the doctor used a floroscope (sp?) and marked the place on my hip the injection would go in with a sharpie. Next he numbed me with lidocane (sp?). Once that kicked in, he injected me with a combination of the contrast, saline and epinephrine. It is done with a floroscope so they can make sure it goes in the right place and there is enough. The decision was made to not use the tracer due to my allergies, and the doctor went by feel and how I said it felt. He got it right and it wasn't a big deal (BUT he is a top guy for this procedure and does this everyday...I asked if it was gonne be a major guess or was he solid). They also kept extra epinephrine on hand at all times "just in case" since I go into anaphalaxis from shellfish. It is very rare for people to have a reaction to the stuff they use for MRIs and normally do not even keep the epi right there during the procedure. I was also told if I felt funny, had trouble breathing, itched, felt uncomfortable, or anything else at any point in the MRI to immediantly let them know. I did fine and had no side effects. Since it was my hip, I had major issues walking due to all the extra fluid for several days. I was also unable to carry anything or do much of anything for several days. They had me in a wheelchair, and I had to use that to get to the car too. I needed help walking (somebody to lean on) for the rest of the day. The next day I limped and walked really slowly. It took a few days to go back to normal but wasn't bad. I think that may be a version of what they are doing to you. Not sure, but maybe that will be of some help to you. The medical staff at the hospital I was at, was outstanding. I had two nurses with me during the injections, and they allowed my mother to stay with me for everything except for the MRI. I do recommend bringing a bunch of CDs to have them blast during the MRI. I get really cold on normal days, so I was even colder during the MRI. Ask for extra blankets and even some warm ones during the MRI. If you shiver it will mess up the pictures and they will have to re-do them. Hope some of this helped. I know the others on here will be able to offer more experience with this. It is nothing like the horror of drinking Barium or those sort of tests. Good luck!
  18. I'm one of those odd folks that likes interviews. I know who I am, and what I want. So an interview is fun for me, because I sit and talk about myself. Not to sound vain, but you know yourself better than anybody else. Some interviewers can be really tough, but just stay calm and don't let them rattle your cage. It's a time for you to sell yourself, and let them get to know you and for you to get to know the interviewer/company etc. You can ask questions too! Ernie said to detach yourself...I think that is how she said it. I agree, you will have situations in life where you just need to stay calm, breath through it, and detach yourself. You can get hysterical later on in the privacy of your home, and rant, but don't let them see it. Nina is correct about it being illegal to ask much on heath stuff. I just mention that I sometimes pass out, need extra fluids, a cool space and a chair for when I need which is most of the time. Everybody I tell is cool with it, and just wants to know what to do if I pass out so they don't panic or do the wrong thing. If people are horrible to you, you know right away, "Hey, this isn't the place for me." It varies on the situation but I like to let people know I pass out and need to sit etc. Otherwise people think I am lazy and spoiled and I'm not. I just need those things so I can function. There is no shame in being sick, it can be really tough at times but its okay not to be like everybody else. Part of life is learning how to deal with these things along with rejection and acceptence. If I get rejected for something, it bothers me, but I know there is a good reason and I typically find out I am really glad I didn't get the job down the road. Things have a way of working out...it just doesn't always seem like it at the time. Take care and good luck! The more you have to do these things, the easier it gets!
  19. I'm not certain what is going on, but it does sound like its time to go get another opinion for a SPORTS Orthopedist. I had alot of trouble with shin splints years ago that became really severe. Lovely how people try to make you ignore what is a really bad pain, you keep pushing and it can get worse. That is how it is in sports, I don't mean that for everybody, but pain needs to be checked. Anybody can get shin splints but they are more common in runners, gymnasts, etc. Sports where you have a constant repetition and pounding of the leg. If I wear a doozy pair of shoes, I can actually get a mild shin splint. Hence I am incredibly picky about comfy shoes. It's odd that its not constant, but it could still be something that is just flairing. I had issues with my shins for months and than it just went "away" and came but but far worse. I highly recomend finding a TOP sports orthopedist that deals with Olympic athletes and professional athletes on a regular basis. You don't have to be an athlete to go to one of those doctors, but the great thing about them is that they are very specialized. I have one doctor that only does legs, another hips and knees, one wrists, etc. So when you say something hurts, they really know what you are talking about, far more than your regular doctor. The excellent ones can listen to what is going on, examine and give you an idea of what is going on VERY quickly and prove it with the tests. Shin problems don't always show up in x-rays and you have to wait months for a stress fracture to show in some cases. A bone scan or MRI will show more. Mine showed up all over an MRI, but not on an x-ray for months. You mentioned pain with pointing and flexing. Some stuff in there can get too tight and cause problems. A good sports orthopedist should be able to figure out what is going on, and help you get a good PT program going etc. to get it taken care of. Good luck and let us know how your doing! I hope this helped some.
  20. AARP Magazine published a really great article recently about pain. For me it was extremely benefitial in better understanding pain management issues, and that pain needs to be controlled and patients shouldn't suffer. They also had alot of really good link to pain organizations will alot of educational material, that was easy to read through. I don't know the link, but if you google the magazine you should be able to find it. Doctors vary on how they want to treat pain. There does come a point where if a patient has tried everything that is non-prescription, massage, pt, etc. and are miserable and they are no longer able to function, they do need something stronger. There is a big discussion on people needing the strong pain meds. If you have to take it, it doesn't mean you are addicted, nor does it mean you will become addicted. Yes, there is that chance, so you need to know those things and monitor as you take the meds. If people are taking the meds to "cope" and not really having physical pain, and they take and hurt themselves its an addiction problem. If you have to take the meds to be reasonably comfortable, and function, AND they IMPROVE FUNCTIONABILITY, they are needed. Such a difference, and it seems to somehow get confused. I will see if I can find the links, because those would tell you so much more. Do research about pain treatment so you know more. I found that to help me learn more, because it is a bit complex and there is controversy surrounding the meds. More so in some parts of the country than others. With most pain you don't want it to get unbearable, although that can still happen on meds. You have to talk to the doctor and come up with a plan on what to do if your pain worsens on meds, etc. Keeping a log of whenever you take a pill is a good thing to do and take that to your doctor. We space out my pain med throughout the day and night. On days my pain is really severe, we have a plan on how to slowly increase the dose, monitor it, etc. Than when the pain is less, I take far less. If it goes on for more than a day or two, or I am just really miserable and pain is beyound bad, we go ahead and call my doctor and discuss what to do. Different forms of massage and even several times a week can be benefitial in conjunction with the meds. I refused to take anything until I was unable to function and sobbing from pain. Doing everything you can to lower your pain levels and cope with it is always best and than add meds. It also helps in coming off of the meds. I'm rambling...Mine usually works in 30-45 mins. Sometimes its really hard to get through that time, but knowing I have relief in a few more minutes helps. Occasionally I am doing really bad and it doesn't bring much relief and we do an increase, and within a day can back off to normal doses and it doesn't tend to happen for awhile. Hope some of this helps! Being in severe pain is really rough, and I do hope something works for you and you feel a bit better!
  21. I am so happy you have such a great goal and are moving forward with it! I have always loved training and having goals and a set training schedule to get there is so important. I am doing a big Ditto on what Kite said about running sneakers. I am getting back into running as I am doing better but used to run an insane amount each week. I always have at least two pairs of sneakers, sometimes three for training. I use one pair in the gym and the other two are kept for running and rotated. I know that seems kinda nuts, but running shoes are MEGA important to how well you are able to perfom, how well you recover and your longevity. Shin splints are such an issue and once you get those, if you keep pushing, you will get stress fractures which lead to bone infarcts. I have a bad word for what those are like, but they can take a year to heal and you aren't able to put any weight on the leg for that duration. Been there done that. I think its good that while it most likely won't happen people know about these things, so they can prevent them from happening. I have gone to a hardcore running store since a fairly young age. They have me stand bare foot to see bone structure, pronation etc. Followed by walking and running on a firm surface. I have major pronation, and wear out sneakers in less than a month if they aren't really good. When i was younger I wanted the shoes with pretty colors, but it really comes down to being "pretty" and having injuries, or having a truly solid and functional shoe. I also have a hard arch support that goes in my running shoes, and can sometimes be replaced before I have to replace the shoe. We do a few other things like half insoles, etc. that help. Lacing makes a difference too. I don't mean for this to be a lecture, but its something I am really firm about. I've done elite sports for so long, and have had alot of injuries that you just end up getting when you do something for that long. Whenever I can tell people about sneakers, or things that have helped me I try too, because it can make such a difference in performance. I go to an incredible running store and when I'm not able to get there, if I am still in the same model they send it to me no matter where I am. OH! Just remembered, another cool thing about the store I go to, is that they have a treadmill in the store. So you can try out a shoe before you buy it, and really get an idea about how its going to perform. They also discount sneakers majorly after so many pairs, and if you bring in your old sneakers and donate them for charity and to be ground up for footing, you get a really good discount. Most stores do stuff like that, so it makes the cost alot less. Your shoes sound really cute! Nike has some really great clothes, cut for women. Adidas has some super stuff out too. Anyhow, Keep on with your training and I know we all look forward to hearing how you do! Take care and train hard!
  22. Deb, I would look into getting your heart checked, since you mentioned heart pains. Even if it means getting another opinion. Have you had an exercise stress test? Where you have all the heart monitors on, etc. and you run while they monitor your heart? It's a good test for athletes to go through, because there are heart things that can be picked up here and not in other ways. POTS itself isn't really chest pains, so I would get it checked to be sure, because you should be able to exercise without that happening. I have POTS and can exercise at a very high level without trouble, my only trouble is stopping...if I go and stop and stand still, I black out. If you do well swimming, just go swimming several days a week or see about a water strengthening/aerobics class to make it more interesting. Or go work with a personal trainer for those four days, so you are supervised/monitored and have a specific program, that changes depending on how you are doing. Also, if they want you to loose weight, see what changes you can make with your diet. Sometimes just keeping a log, adding more water, cutting back of some foods, adding in more veggies can make all the difference. Good luck!!!
  23. Yes, there are places that make clear bracelets, etc. I love the clear idea! Seriously a great idea, we should follow through on that...thanks wareagle!!!!
  24. I have the virus thing too...its going around and is mega nasty. Flat out in bed for days...been sick since last week. I'm having dehydration issues too...grrrr...feel better soon!
  25. In publicity info. you are trying to "brand" us...so people see the Lance Armstrong Yellow bracelets and they are able to connect it. Like the Nike swoosh, stands out, and is consistent through all of their merch and publicity info. Nine pointed out that the printed info, has a certain shade of blue/navy blue. I would suggest using the same color for everything. That way it is consistent. When you get into publicity stuff its very important to decide on the logo and colors and how it will be used in all situations. Aside from it just looking better, its easier on the company to know they always use the logo this way and the colors this way. From there the public is better able to "relate" and know that, "Oh, I saw that color blue and it has to do with people that have dysautonomia" Another way of saying it is, making an "image" for us. Not us all passed out, etc. but for what we are and stand for. I am very brain foggy and not sure if I am making sense, so I am going to stop not, because the thoughts don't seem to be coming out to well. I can re-explain or add to this later if you all want. I do think it is a great idea to have a specific color! The blue used on the bracelets, etc. is likely the best to stick to, since they are already out there and we couuld continue on that theme. If people are really into teal, we could use that in another way and make it work.
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