sally

I'm very sorry your doctor informed you of this news but maybe when your condition stabilizes a bit better; could it not be possible at that time to have a child? Is this a specialist that you have spoken with regarding pregnancy and your condition? He is probably thinking of how your body would react under the stress of pregnancy and is on the side of safety. Everyone is different I know and I don't know the severity of your situation medically but I do know that some people have had children while having this condition. Me included. I didn't know though what the problem was back then, I only knew I felt like I must have had some terrible disease that no one was finding. Pregnancy for me was a blessing, it was the only time I felt normal in my life but soon after birth the condition re-appeared to stay. Didn't understand that either and caring for children while ill was another huge challenge that required a ton of support from my husband. And, unfortunately I passed our condition on to both our daughters as it is genetic. Unknown to me at the time. Maybe when things get a little better for you physically, it will be a better time for you then. I am very sorry. This is one of the harsh realities of chronic illness that really stinks!!. Our oldest has this same realization before her due to her illnesses and meds that cause severe birth defects as well, so I do understand where you are coming from. Wishing you the best and good luck and I hope you feel better soon.

Hi all, just came across this...interesting reading for those to take melatonin. I wonder how many of those with low bp and have sleeping difficulty take melatonin. something to ask the doc about. http://www.aphroditewomenshealth.com/news/...alth_news.shtml

Hello, To try to answer some of your questions, I can only tell you some of what I've been told by a doc at Hopkins, genetics at chop & NIH. In EDS everything is more laxed than in normal people so yes, having EDS can affect your blood pressure and heart rate (to pull your bp up to normal) your veins are laxed which causes blood pooling. Also in EDS about over half I believe experience painful joints about 54% take some sort of narcotic medications to deal with the pain along with numerous and various other treatments to help. It is said that the hyper mobile type of EDS can be the most debilitating due to the painful joints. Check on the EDNF site for a better explanation of the different types of EDS and the various symptoms it may cause. Although the symptoms are not locked into a certain type, people of one type can experience symptoms of another type. EDS can cause this tendon thing as well as many other symptoms and dislocations/sublux. The pain in the joints can be quite excruciating that not much seems to touch but there are things you can try to lessen the pain so you can live a more productive life. It?s different for everyone. There are milder cases and more severe cases as well. For your why, the best way I know how to explain it is, that your body is made up of collagen and it is everywhere and EDS people have faulty collagen so the structure or foundation is faulty so things do not hold together properly. http://www.sciencedaily.com/encyclopedia/Collagen best wishes

Amy, Hi, I'm not sure what age your husband is or his health history but keep an eye on it and if he gets worse call 911 next time. My mom in law, had a heart attack and when first symptoms showed up, the blood tests and EKG were all fine and she was sent home. about 18 hours later, she developed worse pain and continued symptoms and we went back again and then the tests all showed that she indeed had a heart attack. Not to scare you but this goes to show you that sometimes at first the tests may not reveal a problem yet but that doesn't mean that there is no problem there. I'm glad your seeing your regular physician in the am so maybe he/she can retest the blood levels to be sure if he is having continued symptoms. good luck and best wishes.

Hi Kate, Luv your name by the way. I'm sorry you are not feeling well enough to go on your vacation today. I can't count the number of times that we've had to cancel or re-arrange plans to accomodate our health. It is a frustration of having a chronic health issue. Maybe if you explain to your father that you understand his frustration but it doesn't compare to the frustration you feel and deal with and explain how it impacts you. If he is not open to listening, I would just wait until he comes down with a virus of some sort and then tell him that is exactly how you feel on a daily basis and now does he understand? Some people will come around and then again some people never get it. It sounds like at least your mother is supportive. good luck on your vacation and feel better

April Showers Happy Holidays to you as well and all who celebrate

Hi Lisa, I'm sorry to hear that you are feeling so poorly and things are not going well. My oldest daughter takes this medication (azathioprine - Imuran) 100mg for her Ulcerative Colitis. She has been on it for about 2 years now I guess. I have spoken to another person with UC that has taken it for 18 years without any difficulites or major side effects. I was very nervous seeing my daughter start it as well because she is a young person, but so far there has been no problems what so ever (knock on wood). When you are taking it, you need to make sure that the things you come into contact are clean and free as possible from bacteria. Stay away from illness as much as possible, washing hands frequently when around ill people. But, don't freak out totally about germs, our daughter still teaches children in school and has 2 ferrets at home etc, she just uses purel and lysol wipies on things and washes her hands freq. Also, you may need to take an antibiotic before dental work or if you cut yourself and watch for bruising if you start bruising more than normal to contact the doc for a blood test. You may have to have blood work done to check you blood count every 3 months just to make sure everything is okay because this type medication can effect your bone marrow in some people or in large dosage and cause pancreatitis in some, but you'll know within about 3 weeks if it causes pancreatitis. And, I believe you have to be weaned off of it as well. It doesn't work right away either, it takes about 3 months to have full effect. Meanwhile, you'll probably be getting regular blood test to make sure your blood count is okay during this period. Your doc is correct in saying there are stronger ones but this medication is pretty strong depending on the dosage. She has taken it and believe it or not, she has caught less colds and when she does it has been shorter in duration. For her, her immune system was over doing itself and attacking her colon that she was constantly sick with colds and resp viruses. But since the Imuran, things have improved plus kept the UC at bay. If you are on the 100 mgs dosage, if it upsets your stomach, which it can, ask your doc if you can have 50mg to take one in morning and one in PM, thats what our daughter did to avoid upset stomach with it. Now, some bad news about it....if you haven't already read it.....it is not recommended to get pregnant while taking this medication and in your system due to birth defects. Athough, there are some studies I've read that state its not a problem but from what I've been reading on it....the jury is still out. here's some information http://www.medicinenet.com/azathioprine/article.htm I know it is always scarey taking a new medication especially a med such as this one but for our daughter, it has been a life saver, she would have lost her colon entirely without it and probably her life due to Ulcerative colits. She had severe pancolitis from the UC. If you have any other questions about it while taking it, feel free to email.

Congrats on your degree and all the hard work! wonderful job!

Hi Roselover Your bracelets are lovely!! Great job! Also, I went into your website and saw your watercolor paintings and I think you are very talented indeed! I've placed a link to an artist website that is terrific, if you haven't already seen it. It has forums that you are able to learn tons of information that are graciously donated by other artists. Some beginners and some professionals that are very willing to share their wisdom about anything from painting, sketching, inks, and also publishing & supplies as well as the how toos. Also if you want to place your artwork on the forum for fellow artists to critique and give advice they have a spot for that. No one is cruel they give educational instructions, advice or kudos. If you like the site, and need help in any of the areas just holler at me or anyone on there for the how toos. http://www.wetcanvas.com/ Keep up the good work and keep creating! best wishes from a fellow artist.

Shannon, I just read your post and had to comment.....Great outlook! I believe in what you say whole heartedly and you sound like you've learned the method (thats it in a nutshell) to get through things well in life while living with a chronic illness.

Hi, Speaking from 26 years of marriage almost 28 years total being together and having many health issues the whole entire time. I would say first finding a person who can understand what you are going through is important in the first place for a good foundation, which it sounds like you've found that with your BF. I would just keep things honest and real and wouldn't hide anything emotionally or otherwise regarding health as a whole as it effects everything in your waking life anyway but having said that, I would also not complain about every single symptom constantly as it wears anyone down on a daily basis. Just explain what your down days are in the first place and then after that tell him you are having a down day whenever your having one, he will understand. I call them my low gravity days and my husband knows exactly what I am referring to. I would say to just take everything in stride as much as possible and it is okay to have down times but just realize that there will also be up times and look forward to those. What he feels is perfectly normal response to someone who is ill alot I think but as long as he is listening and understanding (as best as he can without having this problem anyway) you can always work through the rest by talking and understanding. My daughter had this same talk with her BF of 5 years regarding her illness especially when she was diagnosed with ulcerative colitis on top of things that she already has. She told him that things would not be changing any time soon and if he didn't think that he could handle things let her know now because her health would not be getting any better and most likely would get worse over time. But they focused on the good of the relationship and realized it outways any of the cruddy health parts so its okay. There is alot that she can't do at times but then when she can, they do as much as possible to make up for it. It also helps if you have a person who is like minded in activities....this might not work as well if she were teamed up with a physical person who loved to run, ski, or other such major physical things all the time and expected her to be with him doing it, which would never be possible. Alot of men will feel powerless and not know what to do during an illness because they want to fix things and get things back to normal as fast as possible, so they may get frustrated on what to do to handle it. Thats is where you come in, tell him what would help you best to work through the tough time that way he is contributing to your getting better or getting through things. Its okay to lean on each other, after all, if you are planning on getting married, thats what it is all about. Believe me, you'll need that for sure throughout marriage numerous times on many things outside health issues as well. Plus there will be times he will lean on you as well and need you to be the strong one. good luck and best wishes sent your way.

I would suggest you get another opinion from a different ENT or pulmonary physician. Have you had a CT of your sinuses? If you are using a nasal spray, that could also possibly cause problems in the sinuses if you are having some strange reaction to it.

Hey Sophia, I'm right there with ya in the same boat, was told about ablation for bleeding and fibroids etc. They told me that I along with fibroids also have adenomyosis (from symptoms) and since the only sure way to diagnose and or cure those is hysterectomy, suggested that or abalation to see if it would help the bleeding issue. OR, wait for menopause, no hormones - no more problem per doc. So, here I sit waiting for that to happen, tapping my fingers....... As long as cancer is not an issue, I personally prefer to wait for meno to happen unless things get worse that is. for myself, I've not decided on the ablation as yet, I was told that it would not help with the pain but would with the bleeding issues. Boy, what we women have to go through! Good luck to you in which ever decision you choose.

I got one for ya.....when I was having a cervical bio done and feeling frightened the doc said well, I know how you feel, I just had to get a prostate check. The nurse and I just looked at each other dumb founded. Must be nice to have his reality huh? Good luck and if you can, try to take some Advil about 40 min before you go in. They are def no fun! I've had them myself and some were fine and others made me crampy and faint feeling.

Hi Dayna, Hope you are feeling better soon. Alot of us on the board can relate to what you are feeling I'm sure. Its very hard to raise children while ill with any illness that wipes you out constantly. For me, I raised both my children like this (unknowning what was wrong with me at the time), it was very hard and heart breaking at times not being the mom I thought I should be when I was ill alot. If your children are smaller, try to do things that don't require alot of energy to do like reading together or coloring or just watching movies. My kids did ALOT of reading and coloring or painting believe me. Hopefully you'll be on the upswing of things soon and can do more physical things with them and enjoy it when you feel a little better. As far as any negative statements from others about your illness, ignore any negative statement. People will not understand fully what you are dealing with and how it impacts your life unless they themselves have a chronic illness to deal with and can relate and any negative statements will just make you feel worse. Maybe suggest they help you out if they are not already doing so. Best wishes sent your way.

Hi here's a link that discusses overhydration and problems it can cause. I think it can occur if you drink water at large quanities in a short duration of time and your kidneys are unable to process it properly. http://chemistry.about.com/cs/5/f/blwaterintox.htm

Melissa, Well wishes sent your way, feel better soon.

Sophia, I forgot to mention that when I was anemic for some reason my potassium was low as well causing terrible muscle cramping. They said it was due to being anemic...So if you're experiencing that symptom also, don't forget the orange juice. good luck

Hi Sophia, It took me about a month before I felt better, I was pretty weak until then and had alot of breathlessness with any activity. Hang in there and feel better soon

I've seen many more 'normal' people out there driving that frankly scare me. I'll take someone who is aware of their body and how they might feel and choose not to drive that day or pull over than some of the people I've noticed on the highways chatting along on their cells and not paying attention, putting on makeup, fixing their hair and believe it or not.....actually reading the paper or looking a catalog while driving! I've actually seen a guy have the paper open across the steering wheel and reading it while driving along! And lets not forget the all time favorite driving under the influence, we get alot in the ER, its scarey how many people out there are driving while intoxicated and cause accidents. At least we are aware of our bodies and how we are feeling to determine if it is safe to drive that day.

Hi Melissa Welcome aboard. Shame on that person for trying to dampen your dream and your effort. Don't let someone else determine what you want to accomplish only you know what is best for yourself. Both my daughters are in full time college with many health issues. My oldest is also near completion of her degree for teaching and was told my her advisor to just quit school that she was too unhealthy to complete her degree to teach. My daughter informed her that she would indeed finish and it was quite frankly not her place (the advisors) to determine what is best for her. It made my daughter very upset that this statement was made to her as well. Don't give up, if you have to take time out when needed, ours had to take a break due to health and hospitalization and recuperating. It has taken her longer than the normal person. What medications have you tried to help you for the blood pressure issues? Hang in there and don't let the negative statements of others dampen your spirit. Good luck to you and congrats on achieving what you have so far and what you will accomplish in the future.

Hi, Any chest pain should be taken seriously until otherwise proven through testing that everything is okay. Especially with someone with Ehlers Danlos

Hi Sophia, yes, anemia can make you feel horrible especially with OI. I took two tablets of iron (per doc) everyday because my iron was so low due to the same factors you described. Fun isn't it? I had to cut back to one though due to GI upset. Here's a link to foods that contain iron as well for you. According to this site, cream of wheat contains the highest amount of iron listed so if you like that maybe it would help as well if you cannot tolerate the prescribed iron. http://scc.uchicago.edu/iron.htm Once through the anemia, I usually take the iron tablets a week to 10 days before and during dot time to avoid a problem so far it seems to be working. hope you feel better.

Nina, you have EDS, if you have painful joints that are made worse by walking long distances as well as the blood pressure problems, if your pain management doc doesn't feel the tag is needed by symptoms from the blood pressure try the eds angle. As EDSers have days where walking any distance is painful this might work as well. depending on your symptoms. good luck

Hi, Sorry to hear that you are feeling badly, when I had pneumonia, I felt horrible, fever, weak, sweats, coughing, tachycardia, could hear and feel congestion (rattling) in the lungs. I don't know if you have previously had pneumonia but as with any illness especially lung or bronchial infection it can make you feel weak for quite a while especially if you have other health conditions that get aggravated by being ill. You may not have the infection going on but symptoms left over until you are completely better such as coughing and weakness. Although with that type of thing, secondary infections or problems can occur which I experienced when I had pneumonia. It just about buried me for months with bronchitis and asthma problems that occurred after the pneumonia and my blood pressure problems made things worse. You might want to get checked out via x-ray to make sure your infection is clearing up completely and don't require additional antibiotics. Also if you haven't had it yet, when you get better, check into getting the pneumovax shot, it is suppose to cover the most common strains of bacterial pneumonia. See link http://www.drugs.com/cons/Pneumovax_23.html Just give yourself time to heal, people tend to rush into normal activity after being ill and then feel worse because of it especially with chronic conditions that can make things worse. Your system has been busy fighting the infection and may need extra time. Hope you feel better soon.