Poohbear

Morgan, I hope we will hear from you thousands and thousands of more times!!! Good luck in the hospital; you will be in my thoughts. Here are some things that helped me keep my humor while in the hospital... I kept a quote book of things that are funny when heard out of context; they really kept me laughing and still do. For example, one of my quotes was, "Would you please put my urine on ice". Normal for someone to say when having a 24 hr urine however, out of context it's kinda funny. The other thing I did (don't ask me why....I have no idea...I was just bored with little energy). I started collecting sugar packets to see how much sugar I had collected by the end of my hospital stay. By the end of about 7 days I had about 3/4 cup. I was amazed at how long it took for those tiny packets to amount to anything!! Hope you get some much needed answers and resolutions!

I've not had this test either. Here's a little something to refer to, it pretty much back up what Gena said but expains a few things further. http://www.gsdl.com/home/assessments/lacto...ance/index.html

Nina, I wish I could make things better for you!! I'm sending healing thoughts and wishes your way!!!!

Hopefully your Dr can shed some light on this. I would think that if you are able to sit up without symptoms you would be okay if you were leisurely riding a horse; I don't know how involved riding lessons would be though.

I'm glad Crissy is doing better. I'm sure you are worried and wondering what is contributing to her symptoms. I don't have any advice but wanted to "chime in" and say I'm glad she's doing well at school. I hope you are able to get some answers to the environmental issues.

I hope you can get in with a Dr soon and get things checked out. I also agree a therapist may be able to help you manage the anxiety. It is only natural for you to have anxiety and fears when your body is not acting "normal". Hopefully your anxiety will ease when you get answers from your Dr. I have several issues with bloating, gas, slow motility etc. At times, I will strongly feel my heartbeat in my abdomen. Though it's an unpleasant feeling and sometimes scary, I've had it enough to know it's nothing serious (I'm speaking for my case only). I often get leg pain as well. For me, this symptom is usually related to either low potassium or too much activity/prolonges standing during the day

Hi Patti! Just wanted to "alert" you...Do the research yourself first. Read that book I mentioned if you can. MANY MANY Dr's are not aware of the saliva testing and they certainly are not ready to admit something could be better than blood draw. Be prepared for an uneducated response. Hopefully you will find a great Dr but I went through many of them before I got one who really listened to me and tried to help. Also, talk to your Dr' about the "not so typical" thyroid test. They tested my thyroid over and over and said everything was fine but then I went to a Rheumatologist for some other problems and they did some autoantibody testing and found my Thyroid antibody was so high it was off the charts. Every Dr I went to said they had never seen an antibody test as high as mine. They started treating me for thyroid problems and it made a BIG difference.

Well, it's hard to give advice like this because everyone is so different about what they like and what their priorities and goals are. I guess my first 3 suggestions would be: Nashville, TN--several universities around and Vanderbilts Autonomic Dr's as well. Metro Atlanta--lots of universities and some decent cardiologists who are informed w/ dysautonomia Jacksonville, FL--again several universities and Mayo clinic. My thought in these larger cities vs. the North or midwest is because of the combination of more nanny jobs available at really good pay and these areas also have universities. I think you could get paid more $ for being a nanny in these places. Check this site out to see if it will help you plan. http://houseandhome.msn.com/pickaplace/com...0&PFS=WA&PTS=CA

Patti, Yes, I had my cortisol checked along with the other hormones when I did the saliva test. Initially, the lab sent me a checklist of symptoms that I checked what I was having problems with and how often. That helps them focus on each individual and what hormones are most likely to be affected. When I did the test it was two vials of saliva collected (one in morning and one before bed). The test results came back showing abnormal cortisol levels so that test was repeated using a 4 vial collection (one in morning, one at noon, one at dinner and one at bed)...this gave them a better feel for exactly how bad the cortisol issue was and how accurate the first test was (the first test was conclusive with the estrogen, progesterone and testosterone). My Dr. recommended this book if anybody is interested in it. I have found it to be very helpful and he also talks about why saliva testing is more accurate than blood or urine testing when it comes to hormone testing. Adrenal Fatigue: The 21st-Century Stress Syndrome (Paperback) by James L. Wilson ****Amazon.com has this book on sale right now for about $11 (shipping may be free if you purchase over $25 worth). I don't know how long the sale lasts Also, for anyone interested, here is a website http://www.salivatest.com/store/symptoms_women.html (there is also a separate list for men at this site). If you scroll down you will see there is a section for cortisol as well. From the book I've read, most people with chronic illness with have some adrenal issues. I've not improved a whole lot so it's not necessarily a cure but there are things that the book offers that are helpful to do and I certainly gained a lot of knowledge and affirmation by reading the book.

Melissa, So sorry you had this experience!! I know it's hard not to take this personally but it really isn't about you......she's the closed-minded one and it sounds like she may be intentionally trying to push your buttons. Some people can't handle the fact that there are those in the world who are sick and Dr's aren't able to "cure" so they blame the person with the illness/condition. You are not overreacting. As someone once told me...there really is no such thing as over-reacting. Your feelings are yours and you may not know why situations produce such strong feelings and emotions but there IS a reason. You may not be aware of all the things that tug on your "issues" but your feelings don't come out of "nowhere". There important thing is how you respond and react to them. I agree with Steph about mailing the letter to yourself. It seems your parents are also really supportive so can you send them a copy as well...someone else to also have a copy who could assist you later if you needed. If it were me in your shoes, I would not send a copy to the Dean because I don't trust it won't be opened. I would be more likely to send a copy to a therapist or Dr I work with. If It were me, I would also just try to limit my interactions with this professor and focus on building relationships with classmates. If you say anything more at this time you may just add "fuel to the fire" and until you get a better sense of her and her class and how things are going to work I would lay low and focus on doing the things I needed to do to protect myself. Of course, we are all different so what I choose to do may not be what's best for you. I support you no matter what you decide!!!!!!!!!!!!! You are definately not over-reacting though! Good luck & keep us posted on how things go and what you decide to do.

I got it on the first try. No lawyer ever involved. I had extremely detailed records and application and I think it also helped that I had been to Mayo and they couldn't offer anything further for treatment. (I should point out though, that the Mayo clinic, generally speaking, does not get involved in disability paperwork but I had their reports included as part of my medical file).

My BP sometimes spikes too high. My heart rate is always extremely elevated. I have POTS and NCS. Most Dr's don't know how to differentiate between the various forms of dysautonomia. You may not have POTS but you may have some other form of Dysautonomia (OI, NCS etc). Good luck working with your Dr.

That's great news Melissa!! I'm also glad to hear I'm not the only one "writing"/drafting letters for my Dr. to sign off on. I figure they are so busy that they usually don't put enough documentation in or all the facts so I do the work for them (usually getting their okay to help draft it in the first place) and then they just sign off or re-type things on their own. Enjoy the independence and assistance you get with the wheels but don't get a ticket for speeding Hope the other run-in you mention doesn't get you down!

Hi! I'm in the middle of this search/decision as well. I found a foldable power wheelchair that I thought was the best option for me.....it is small enough to have great mobility inside (often, the scooters don't have good turning radius which can be an issue inside). It's easily folded up like a wheelchair which makes transport much easier. Do you have insurance? If so, check to see what their policy is. Medicare has just changed their criteria for wheelchair benefits. Sometimes, insurance doesn't pay for the scooters (they aren't concerned if you can get outside....they sometimes only want to pay if you need the device to aid you in activities of daily living INSIDE your home ---bathing, dressing, eating, toiletry, grooming). Let me know if you want more info.

I hope tomorrow goes well for you. I'm hoping for the best outcome for you!!

Some good news!!!! We have found a couple of people via some of the internet survivor lists. We still haven't been able to talk to them but at least we know a couple made it out alive. If anyone is needing it, there is a whole list of sites to look on here are a handful of them. http://www.hurricanesurvivors.org/links.html

I'm relieved to hear you are safe!! Congratulations on the new job and the best of luck with that and your health!!!

I'm glad to hear your AC got fixed but sorry you are crashing so bad. Wish I had some magic cure or treatment to send your way! Hope you feel better soon!

Thanks everybody! It has been a really tough week for many many people. I have heard from some friends and their family members but there are still friends and former co-workers that have not been heard from. I just learned about 15 minutes ago that one co-worker is confirmed dead. Another good friend (who works for the army cor in MS) will probably be sent to New Orleans to work. He says they are setting up tents/camp to work out of. Locally in my state there are numerous shelters open, hundreds of hospital patients have been flown into the AFB and then sent to various hospitals all over metro atlanta. The shelters say most of them are prepared to be open for at least 4 months. Lots of children have been registered to start school here on Monday. Most of the schools around here started up a month ago but it's still early enough in the school year and LA schools start early Aug too so hopefully the kids can integrate with relative ease and will give them some sense of normalcy and stability. It's going to be a rough road for many many months to come. Atlanta is already a crowded place but we feel fortunate and blessed to help these people. It's wonderful and amazing to see people come together like they have to help out. Tension among people is high.... many stations have no gas, there are people trying to get here into shelters and can't find gas, hospitals are asking people not to come to the ER unless it's life or death otherwise they want people to call their on-call physicians or go to urgent care centers. (I'm thankful I have home health set up for IV's when I need them at this point). Definately very far reaching aftermath from this Hurricane. It's tough but I try to stay focused on what I can do to help and keeping my energy focused on that eases the worry some. Thanks again to everyone for your support! I hope all our board members in the affected areas are safe. I notice we still have not heard from some of them.

Yasmin has been GREAT for me; I have been unable to tolerate ANY OTHER bc pill. I have tried everything else and this one is actually helping. AND, in my case, the extra rise in potassium keeps me from having to take potassium pills. It has actually helped me with three problems (cyst, migraine and low potassium). I say try it if your Dr has prescribed it and see how you do and have your potassium checked every month until you feel comfortable that you are safe with it. I've copied and pasted the below from the web. Hope it helps. What should I discuss with my healthcare provider before taking Yasmin ? Drospirenone may increase potassium in the body. The following list of conditions and medications may also affect potassium levels in the body. Do not take Yasmin without first talking to your doctor if you have or are taking: ? liver disease or a history of yellowing of the skin or eyes due to pregnancy or previous use of birth control pills; ? kidney disease; ? adrenal insufficiency; ? a nonsteroidal anti-inflammatory drug (NSAID) such as ibuprofen (Motrin, Advil, others), naproxen (Aleve, Naprosyn, Anaprox, others), and others; ? a potassium-sparing diuretic such as spironolactone (Aldactone, others), triamterene (Dyrenium, Dyazide, Maxzide, others), amiloride (Midamor, others), or eplerenone (Inspra); ? a potassium supplement such as Klor-Con, K-Dur, K-Tab, Kaon, others; ? an ACE inhibitor such as benazepril (Lotensin), lisinopril (Prinivil, Zestril), enalapril (Vasotec), and others; ? an angiotensin II receptor antagonist such as candesartan (Atacand), losartan (Cozaar), telmisartan (Micardis), and others; or ? heparin. ? Also, do not take Yasmin without first talking to your doctor if you have ? had a stroke, heart attack, or blood clot; ? high blood pressure, angina, or heart disease; ? a bleeding or blood-clotting disorder; ? breast, uterine, or another hormone-related cancer; or ? undiagnosed, abnormal vaginal bleeding.

Hi Pete! Welcome to the "family"! Ask questions, vent....whatever you need....that's what we are here for I have a couple of questions for you.... What is the most challenging thing for you being around two people in your family who are often not feeling so great? For those of us that don't live with any family members and thus, they tend not to see our episodes and how sick we can get....got any recommendations for how we help them to understand or even believe our condition? Has it been hard for you to accept the "invisible" pieces of this disorder? You don't have to answer. I'm just curious and wondering if what you say will help others have insight from a different perspective.

What a bummer, especially when you were depending on this weekend to recover from the week and regroup for the next week!! Be careful!

I tend to have a really tough time early in the morning. I'm good from like 10AM to 2Pm and then I start crashing. By 3-4 I'm wiped out and around 7-8PM I get a second wind and if I don't go to bed by 10:30pm then my sleep cycle gets thrown off even more. You aren't alone but I don't really have any answers as to why this happens.

Yes, I too have this problem and I get up and take my medicine, lay back down, and keep doing that pattern until I feel better. I'll share this because I think it's an indication of how sensitive our ANS systems are and because it's a quirky part of me that is kinda funny .... I have a pacemaker because sometimes my heart rate drops, especially if there is a burst of adrenaline (such as a car pulling out in front of me, loud noises etc). The pacemaker keeps me from passing out from heart rate drops. Well, for a while I did not have a regular routine for getting up at the same time every morning. I traveled a lot and had crazy hours so my alarm was set for a different time almost every morning. When I went in to my cardiologist to have the pacemaker interrogated he was shocked to see that my pacemaker went off at such odd times of the early morning, then I realized that my ALARM was giving my system such a jolt I would get a surge of adrenaline. I started waking up to "Radio" mode instead of "Alarm" mode and I don't have this problem anymore. Isn't that funny though?? My heart still races when I get up but since my heart rate hasn't crashed first it doesn't exhaust me as quickly. The other thing I discovered by accident is that if my heart rate just suddenly jumps up to say 140-150 and I'm lying down if I get up and walk or do something active for even just a minute or two (I have to have someone around me just in case I pass out)...but that will actually help lower my heart rate again. It's almost like it jolts my body back into acting right again.

Nina, YIPPPEEEEEE! Hooray for the good night of sleep!!! Oh, how I've been there and can relate to what you've described. I've been worried about you and glad to hear that at least today is better. When I was working I would go through a week or two where I didn't get restful sleep and then suddenly I would just crash and I couldn't get enough sleep. Like you describe...I'd come home from work and want to catch just 10 minutes of the news and the next thing I knew it would be 12-1AM, I hadn't eaten dinner, Tv blaring, lights on (and I usually have to have things very quiet and dark to sleep). I would sometimes make it upstairs to bed and at other times I was so wiped out I would fall right back asleep in my clothes and everything and sleep until morning. Take care of yourself and I hope you continue to at least have good quality sleep!!