Poohbear

I wish I had some good answers for you. I am no longer working; I had to stop three years ago but I worked for 5 in a situation that sounds similar to yours. The only reason I was able to remain working as long as I did was because I worked out of my home, pretty much set my own hours (with limits though), had a boss that was flexible and not a micro-manager. Like you, I would come home and crash and I would sleep most of the weekend. I had no life except to work. Eventually, even that became more than I could do. It is very hard to get others to understand that you are not necessarily better...even if you "look" good. The only thing I can think of that helped me some are things like....easy meals and freezing portions when I could. If I had to brown beef for anything I would buy extra and prepare some for taco's, some for spaghetti, some for meatballs. I invested in a good foodsaver (because I don't like freezer burned food and I could portion control much better with the foodsaver). If I was buying chicken-- boil some and use some for a casserole, some for chicken and dumplings, some for chicken salad. I tried to make several dishes at once if I was able to get in the kitchen at all. I had to be very strict with my schedule--set aside a day and time to pay bills and review mail on a weekly basis. I tried to multi-task as much as possible and I had to keep lists for EVERYTHING. I would put a load of clothes in the washing machine while brushing my teeth, empty the dishwasher while my toast was in the toaster...stuff like that. I can't do these kinds of things now and I don't know if any of that will help you or not. Depending on where you live and if you have a little extra income, there are some places were you can buy prepared meals. Check out this site http://www.supersuppers.com/locations.php What about hiring a responsible teenager or college student to help dust, vacuum, run errands for you?

Missing you Ernie and worried about you. "No news is NOT necessarily good news" We're here for you!

Sorry...didn't mean to worry any of you!!! Thanks for thinking of me and checking on me. I am having a really rough time and recovery has been filled with lots of complications. I'm being told that it will take months and months for me to recover from all that I've been through. Emotionally it's hard on me too....I was not ready to give up my dream of having children. I really did not have a choice; we had to do the hysterectomy because I had severe anemia and uncontrolled bleeding. I still have severe anemia but hopefully we can attempt to correct it now. I'm still on IV fluids and occasional nutrition by IV (we tried to cut back but it didn't work so this week we had to go back to a daily routine). I have home health nurses in and out all the time, Occupational therapy, physical therapy (although we're limited because I can't do much for another month until ligaments heal). It is good because I need all this but it's draining and a full time job. We had multiple issues to deal with while I was in the hospital and EVERYTHING we did had complications. I had several rare complications, ended up having three major surgeries (requiring general anaesthesia) and two other minor surgical procedures within two weeks time. In addition to tests, blood transfusions etc. Since I've been home I've had several more complications and major frustrations with what appears to have been a very incompetent and arrogant surgeon. I DID have one WONDERFUL surgeon who kept me alive so I have to give kudos to him (uh....Corina...have you heard of "kudos" yet?) Em, I love the smidgets! I didn't know that's what they were called. I have a couple of those also and they are great for meds. Corina, I've been to the tupperware headquarters in Orlando too but I don't remember seeing much actual tupperware when I was there. It was mostly offices and they had a huge auditorium (I was there for a marching band competition....many years ago though so it may be different now). Thanks to all of you for your supportive thoughts and well wishes. I'm lurking but not able to post much.

Howdy Sunfish! I can only imagine how weary you are of feeding off the bottom of the ocean. No wonder your tummy hurts!! Seriously though, as I've said before...I struggle to find words that don't sound trite and that help ease your burden in some way. You are in my thoughts and prayers and heart all the time though. Hey... you'll probably appreciate this story..... a friend and I were talking earlier this week about God and various stories in the bible and people on earth etc. I told my friend I need a T-shirt that says something like, "Job's friends were miserable comforters until they learned to shut their mouths and just sit with him SO....Keep your mouth shut and sit down" (this is not meant to offend anyone...we were just talking about how people mean well but don't know what to say and often make you feel worse). Sometimes there are no words. Reminds me of Forest Gump when the girl goes back to the house she was abused by her father in. In her anger she's throwing rocks and then falls to the ground in tears and I think Forest Gump says, "Sometimes, there just aren't enough rocks" If you need me to send you some new PJ's I will and I'll include a note that says you are to wear them as long as you need to! I recently met a new Dr and we were discussing my ADL's and what I can/can't do. She said the one thing that stuck with her and helped her understand my limitations was when I said I can't even do all my ADL's on a daily basis....that I make choices like, "Do I shower today or fix lunch" because I don't have the energy or stamina to do both. I'm sorry that on top of all of this you aren't getting timely responses from all your Dr's!!

Thanks to everyone for the well wishes and sharing your thoughts and experiences. I am on dial-up at the hospital and it takes more energy than I have to do web searches right now. Just to add a few things to maybe help others understand some of the particulars of my case. I have a central line (well..currently it came out while hospitalized and nobody will place another picc and I'm scheduled to have a port placed at the same time the other surgery is done). Anyhow, I'm on coumadin because I devleoped blood clot and will probably be on a pretty high dose of coumadin for the forseeable future. Nobody likes the fact that I have a central line and yet nobody can figure out a way for me to be rid of it. I am severely anemic and being on the coumadin has now made the bleeding issues critical. There is no way to control my anemia without a hysterectomy. I was not prepared for this at all and it's been very emotional for me. I have been told that if I don't have the hysterectomy I may not have my own life much longer (again...long story with way too many complications to list right now). I can't do any of the endometrial ablation procedures because I have cardiac pacemaker. One Dr. says we need to leave ovaries because I should not be on coumadin and estrogen at the same time. The surgeon says "take it all while we are in there". I am consulting with as many people as possible. My gut says leave the ovaries...my body has been through so much already and will have a huge recovery ahead of me and I think taking the ovaries will be too much. I of course never want to have surgery again but I also don't want to remove something unnecessarily. I'm not even 40 yet so this is difficult both physically and emotionally. I do not handle hormones well at all...even small topical compounded ones so that makes me fearful of estrogen. I have arranged to keep somebody updated so they can keep all of you updated. I am now sick after getting a blood transfusion (not BECAUSE of the transfusion but because I'm in the hospital and everyone has been coughing on me all week). I'm running fevers and feeling horrible. Now we have to get me well from this in order to proceed with surgery. Surgery is tentatively scheduled for Tuesday and I will be taken to ICU afterward for at least 24 hours. If I do okay with that, they will move me to a regular floor for a few days. I am also having a port placed at the same time so that I only go under once. I asked about other methods (spinal block etc) but because my autonomics are unstable they want me under so they control my vitals and have airway access. Thanks again for prayers and good thoughts--they are much appreciated especially during the difficult and trying time. Hugs, Poohbear I'm scared but praying that all will go well and looking forward to surgery being over.

Keep in mind that even at Mayo, there are not that many Dr's that deal with these disorders (there are 3 or 4 I think) AND often one or more of them is traveling around the country and not even in the office. Typically their wait for an appointment is anywhere from 4-8 months long. So....be persistent and keep doing what you are doing but know that the reality is that it sometimes takes a long time to get in or accepted at any of these places. Last I checked Vanderbilt had a 6-8 month waiting list and Dr. Grubb had 9-12 months. There just aren't many Dr's available to take cases like ours.

Funny! I'll be thinking of you as you make your journey. Please keep us updated as you feel up to it! I hope you get great care and more importantly, a plan of action that will allow you a better quality of life!

Hey there Em! I don't have any advice but I just wanted to stop in and say "hello". I'm sorry you are struggling so much and feeling so lousy. I hope the new meds give you some relief with no side effects! Hugs, Poohbear

Glad you got to see your cat Melissa! I am hoping this NG tube will settle down for you. I know how uncomfortable they are and I hope that you will be feeling much better within a day or two. My thoughts are with you and of course I'm sending lots of hugs your way. For those of you who are interested....each case is different but in general when you have small bowel bacterial overgrowth it can be the result of the muscles and nerves not working properly. Over time, there is so much overgrowth in the lower GI tract that it moves from the colon back up into the small bowel. Even when a person can't eat, the GI muscles will still move and contract some and of course there is still acid and bacteria hanging out. I think the hope is that if they can get something in Melissa's stomach or intestines that it will start to help control the bacterial overgrowth. This is a VERY simplified explanation and there's much more to all of this but that's the "starter explanation"

I spoke to Melissa yesturday. She was doing a little better but still very sick overall. Basically she is in a "holding pattern" right now. They have a game plan for the next step but have to wait until Monday to see how things work out (Dr's and hospitals don't seem to accomplish much on weekend) ---they are trying to coordinate the next step for her. She has a long road ahead of her but she's a trooper!

Hello Melissa! I just wanted you to know that you remain in my thoughts and prayers and we are all 'rootin' for you. I hope tomorrows transport will go as smoothly as possible and that you will get some positive answers and response from the folks at U of M. Actually...now that I think of it....your appointment is Thursday so you may actually already be en route???

I was just about to post this topic too as I just saw a commercial. I went to the website and I'm a little worried that they won't do a good job on this story but I suppose we just have to watch and see. The "first impression" from the website isn't the greatest. Here's a piece from the website: (you can read this yourself on http://abcnews.go.com/Health/story?id=2815904&page=1 Jan. 23, 2007 ? Norwich, England, is home to rolling rivers, quaint streets and old churches, so it might be surprising to learn that it's also home to the Circus of Horrors. From the bearded lady to the elephant man, mysterious medical conditions have a long history of attracting audiences to a circus tent. And those days have not disappeared. The crowd lining up in a theater lobby for tonight's performance proves the "freak show" is not a thing of the past. Elastic Skin And More! The Circus of Horrors is a touring extravaganza, packing the house wherever it goes. It features everything people don't want to see but can't stop looking at. The show includes all sorts of characters with all sorts of body piercings and tattoos. But the star of this show is 37-year-old Garry "Stretch" Turner, and his wild skin-stretching act. Watch the story on "Primetime: Medical Mysteries" and go to ABCNEWS.com during the show to solve a real medical mystery. Ehlers-Danlos Syndrome Turner suffers from an extreme case of Ehlers-Danlos syndrome, a rare genetic disorder that can severely weaken a person's joints, blood vessels and in Turner's case, skin. The disorder, which most commonly attacks a person's joints, affects about one in 10,000 people. However, the odds of Turner's special variety of the disease are astronomical. The skin on Turner's body is truly elastic. "If [you] ? look at your own skin cells under a microscope, they'd be nice and round and lock in many places. ? But my skin cells tend to be more jagged, and don't fit together quite so well," he said. "The best way to describe it is I'm built rather like a badly woven basket, if you can imagine that, which will pull apart." Normal human body cells are held together by a kind of chemical glue called collagen, which keeps them tightly bound. But the collagen of someone with EDS is misshapen and loose, which, in the most extreme and rare circumstances, produces skin like Turner's. Paper Thin Skin Backstage at the Circus of Horrors, Turner demonstrates how the skin on parts of his body can be pulled away. "There's areas of skin, like on the belly, for instance, that will stretch a lot further," he said. "It's actually twice as thin as regular skin," he continued. "Although you wouldn't believe it to look at it ? it is actually quite paper thin

First check the date on the syringes. Heparin does not have a long shelf life and there is a chance it's expired already. FDA has strict guidelines on things like this but generally speaking, as Dancinglight said, SOME cities have free clinics that can accept these meds by law. Also you are allowed to donate SOME supplies and meds to either hospice, a medical missions team (check with local churches) or veterinarians. Meds that cannot be donated can be taken to your local pharmacy for proper disposal.

Continuing to think of you and sending lots of hugs, prayers and good energy your way. I hope you are getting some answers and improvement! Anyone heard an update on our sunfish? Has she been transferred?

Rita, How did your appointment go?

Hi Tearose! I can relate to your post. I've seen your name on here through the years and like you, I don't post here much anymore because I've hit that wall....where there just doesn't seem to be anything out there working and you long for improvement and quality of life. I would suggest you start writing down all of this stuff if you can. Try to organize it in a way that is concise so the Dr's will be more likely to read it. I would make lists as much as possible. For example, I would write down on a sheet of paper what my goal for this visit was. I would write down (to refresh their memories) what treatments you've already tried. What specific issues you want addressed. This isn't to say they will address them all but it will be clear to them what you are wanting addressed and I would like to think they will address as many of your issues that they can in the time that you are there. I might also recommend you try to put them in the order of importance. For example, if you really feel like you could never leave there without the knee issue being addressed put that at the top of the list. (I understand it may be extremely difficult to put these in some type of order though). You have every right to participate in your care as much as you can and I believe we all have the responsiblity to do as much as we can. It's common sense that a person is more likely to carry out a treatment plan that he/she helped to develop! I would let them know that your preference is to do as much as possible that is "natural" (diet, exercise, vitamins) and express your concerns about your fears. Like you, I've had good Dr's and bad Dr's. I think it is more disappointing when you get a bad Dr. at a place like Mayo but if you've been reading on these boards you know that that is the reality. It's not YOU it's THEM so keep that in mind if you do get a bad one. I understand the anxiety around your trip. I'm facing some of that myself as I prepare to go back for a follow up at another top clinic. You wonder if they will be helpful this time, if they are going to listen to you, if they will have something to offer you. You sometimes feel desperate for some positive answer, some renewed hope etc. AND, you sometimes feel like if THESE Dr's don't get it (at places like Mayo, Cleveland, Vandy etc) then WHO WILL??? I don't have answers but I do think this is normal in the context of cases like ours. Know that you will always have the support of others suffering from these disorders and at least you have a safe outlet here. Hugs, Poohbear

Hey Melissa, Hope you are improving with each day. Here is a little something to remind you that you're loved and thought about. I'll spare you my singing it but it goes to the tune of Gilligan's Island theme song. To the Tune of Giligan?s Island Oh here?s a wish for our little sunfish That?s aimed to make her smile We hate to hear when she?s so sick And away on her OWN isle. Our fish has a mighty gumptious gill A heart that?s brave and sure Her body don?t accommodate And we yearn for her a cure. And we yearn for her a cure The ups and downs they are real tough But our hopes do not get tossed If not for the prayers of her faithful friends She might feel much more lost?she might feel much more lost We?ll take your hand and stand with you, do you feel us with you now? There?s Mighty Mouse, and JaneEyre too Your family and Dancinglight, A sad Poohbear, the Corina and MANY MORE Here on Dinet?s site So this is our wish for our little sunfish We?ll be here through all times We?ll help you make the best of things When you don?t feel in your prime Your Doctors and their nurses too Will do their very best To make your stay more comfortable So maybe you?ll get some rest. We long, We yearn, We miss you so You?re heavy on our minds We send our hugs and angel wings And all things good and kind So get well fast and chat real soon We sure do miss your smile We want you back in swimming form And floating in OUR isle Get well soon! Love, Meagan J.(Poohbear)

I hope you get some answers for your Mom. I have a blood clot so I've gone through some of this (although not to the extent that your Mom is dealing with). Coumadin does NOT get rid of existing blood clots. When they found my clots they immediately started me on Arixtra and Luvenox shots (they are immediate acting while the coumadin builds to a therapuetic level). It can take several weeks to get the coumadin in a therapeutic range and she needs the shots until the coumadin is therapeutic level. Then, they should be doing weekly blood tests to make sure the coumadin is consistent and staying in range. I've learned that EVERYTHING effects coumadin and it is a royal PAIN to keep regulated but you do learn along the way. Keeping a consisten diet is extremely important and even one missed dose can mess up the whole week. It takes 5-7 days for changes in coumadin to be reflected in the blood stream. Make sure the pharmacist has instructed her of all the foods she should avoid or have in only small portions once or twice a week (generally stay away from leafy green veggies, cranberries, reduce liquid meal supplements in your diet--like Boost, Ensure etc.) Also, make sure the pharmacist is aware of ALL medications, including vitamins and supplements that she is taking because most meds have effect on coumadin. Meanwhile, have they considered giving your Mom clot busting drugs to get rid of the clots or help dissolve them? Also, once you have a blood clot you can continue to have swelling (and may always have some for life) because the vein walls are then irritated however, it's always important to have it evaluated because you really don't know without having scans done whether it's blood clot or other complications.

I don't want to discourage you from finding answers but I wanted to offer a couple of things that might help you decide what is best for you. Of course, this is a personal decision and only you know what you need so this is just my opinion based on my experiences. Mayo is very good at ruling out disorders that may be causing this syndrome. So, if they didn't find anything in your case that is the root cause then your "odds" lessen that anyone else will figure it out. That's not to say you aren't sick....only to say the researchers are still very limited on what they know but they do admit that there are probably hundreds of reasons why people get this syndrome. You know the options to help control symptoms and hopefully you are trying those options and something will help. My experience is that I have been seen by two mayo clinics, vanderbilt and countless other Dr's. I got a lot of good answers about what my body does and does not do but still no "real name" for the disorder and still no effective treatment. I wouldn't change what I did at all but I was very aware that I was probably not going to get the answers I wanted. If you have the time and money to pursue your answers then go for it but if it puts you in greater financial strain, family strain etc. then it's probably not worth at this point, your treatment options wouldn't change.

I can feel your frustration with being your own best Dr! Sounds like you are in the same boat I've been in with the hypertension and fast heart rate. I have ashtma that was made worse by most of the beta blockers. I responded well to Aldomet initially but then ended up allergic to it. Clonidine was my second best option in a very small dose (please know that sometimes folks like us need to start out on tiny amounts and slowly build). I have been able to use a small compounded dose (I'm actually taking 1 to 2 mg) of metoprolol. It is somewhat of a pain to have to have the med compounded and obviously much more expensive but it's one of the few that have worked for me. If you haven't read it yet the Patient handbook on NDRF may help you to review as well. Good luck in your search

When you get emails from 1-800-wheelchairs.com advertising "Gifts for you and your loved ones" during the holiday season.

I'm so sorry to hear this! I know you just want to pull your hair out at times; it seems like there is always one complication after another. I am praying that you do not have another line infection and that if you do they will quickly treat it and get you feeling much better soon and back at home. At the very least....I hope you have GOOD nurses and Dr's taking care of you. Big Hugs! Poohbear

I'm happy for you April and I wish you the best in this pregnancy. Keep us posted on how you are doing and your progress

Brand name drugs are regulated a little differently than generic and that is why brand vs. generic can work differently. FDA requires ALL ingredients in a brand name drug to be consistent and reliable in EACH pill however, for generic pills the FDA only requires a consistent amount of the ACTIVE ingredient in each pill. Therefore, not only are the inactive ingredients different in generic pills but each pill in the bottle may be different amounts of inactive ingredients. (My dad's a research chemist which is how I know this) As a GENERAL rule if the medication requires a very accurate, consistent and specific dose, you should stick with Brand name (like in birth control pills or any hormones--thyroid medicine etc) or at the very least do not switch brands in these types of drugs. I am very reactive to different brands. For example, Tenormin (Brand name) I can take a lot less of the drug and it works well but if I take generic I have to take twice as much medication and it still does not work as well. I can't switch my brands of thyroid medication without having a few days of terrible tachycarida.

Cardiac Disease Specialists in Atlanta. I just moved away from there but I had been seeing them the last 5 years and they are the only ones in the state that really deal with this and know what they are doing. There are a couple of Dr's at Emory that were good Electrophysiologists but didn't know anything about POTS. Make sure you ask to see Dr. Thomas Deering or one of the other electrophysiologists (make SURE you tell the secretary you need electrophysiology) PA's John DerCola, Debbie Fikes, Ken Lyda. They have a website you can check out..do a search for Cardiac Disease Specialists They also have a surgeon in the group who studied with Dr Grubb years back and they are also familiar with Vanderbilts protocol for getting people in to the research programs. Their address and phone # is 404-355-9815 95 Collier Road St 2035 Atlanta, GA 30309 Good luck!