nadine

Dear Jhjd- I am sorry, but your post did make me laugh. I think the humor is necessary at times, to off set the sadness we experience. The trash can story was a riot. I wish you better days, hoping you can continue to work,-- keep that secretary- lol- and get that permit. Take care

Susan- I am reading your post and feel your frustration regarding the unknown and anxiety regarding your daughter. I don't know what to say as it seems everyone's experience is dift.,but we all seem to have life changes due to illness. I do know how hard it is to raise a child when you are ill and I remember many many times I was terrified, as I didn't know how I would feel or if I would collapse. Somehow I got through it, but with a lot of help from family and friends and actually had to send her to daycare even when I wasn't working for a period of time. It is good that you have the summer off and can hopefully get stronger, being able to rest when you need to. I can imagine how difficult it must be to no longer be able to tolerate the exercise you used to love. I am not an athletic person and never was, but I can imagine for you that would be a major loss. Try to remember all the good days you have and that you do have them and hopefully they will increase. If I think too much of what I lost it becomes overwhelming. I find that if I journal everything I do in a day, and I mean everything, it makes me feel more positive. Of course I tend to journal more on the very bad days, As far as being with your daughter and not feeling well. I always had contact info with me, before the day cell phones were ever so available, should I need to hand quickly to someone for help. Sounds somewhat dramatic, but I felt at least they would know who to call, meds, etc. Do you take snacks and water when you are out? I do that every time I leave the house, no matter how long I will be-even just stepping out in the yard for a bit. Take care--

Interesting post as I called this morning to get my temp. card updated again. I keep asking for 3 months, thinking it will pass, so here is round 4!! I am not able to drive, but even with others driving me it has been helpful as they can't always drop off at the door. I agree with all the others, didn't want it-but a must for me. I wouldn't make it through most of my apts. if I had to walk across the parking lot. Saved energy is a bonus. You can't worry what others think if they don't see a wheelchair or cane, etc.

So glad that you were able to enjoy the summer plans you had as a family. I was wondering how you were all doing. I hope that your husband's health continues to improve! I was not sure if he plans to only take the meds when he is very symptomatic?? Not sure what he was given and if that will benefit him, if he doesn't take on a daily basis? - There is no place like home, when it comes to bed and sleeping--

First- SUE I think I may have posted in error in regards to your niece?? I believe it was not your niece's dad that had the heart attack?? I am sorry about that, ? it was her uncle. I still think a scrapbook, would be great but a focus for family memories, so sorry if I misunderstood. I thought it may be healing for you in some way-personal choice about that- or you could do some other scrapbook topic. Angela- You are one amazing 22 yr. old!!! I loved your post and will save it- anyone could use your ideas for a variety of reasons. Your friend was right about your self education!!

Dear Rebecca- Welcome- I understand exactly what you are saying about the whole diagnosis thing. I am also still waiting for clear diagnosis. Everything seems to be we think, not sure, unclear by tests, etc. I am still hoping for clarification in many areas, but after many years of this- I will be happy to just get any relief from symptoms and back to some functioning level, regardless of diagnosis. It is very difficult to explain to others and they just don't get it, for the most part-although supportive. I did wish for "the label or diagnosis" more than anything, other than a long list of possibilities and symptoms. Part of the process it seems. I hope the new path they are now looking at will be helpful in some way for you.

Sandra- I am still learning about the food relationship, but I do notice a connection. I am at least thankful that you know what to expect daily -not the ups and downs, but it is still a major adjustment in your life. I find I get a lot of what seems like abdominal bloating and pooling, at times, drives me crazy. Sometimes I haven't had anything to eat-so not sure, sometimes happens after sitting, so try to move as much as I can. Nadine

Sue- I was wondering how old your niece is? My sister and I are also very close and I am sorry about the loss of your brother, that must be very difficult. I was wondering if there was something you could do to stay connected with your niece when you can't see her. My sister lives approx. 3 hours away and we talk weekly by phone and chat by email. She has a 4 yr old son who I miss dearly and it kills me, because when I first became ill with CFIDS (many years ago) she was there for me. She cared for my then 2 yr old on many weekends and she is basically a single parent, so I wish I could do more. Some things for suggestions- she sends video or dvd- one hopefully coming today of his preschool play and awards, him riding his "big boy" bike and just talking on video, etc. She has also sent cards that were lovely and I do on occasion as well, when I can get one. Wondering if doing a scrapbook of your brother for your niece, might be something special for both of you. I am not very crafty, but I feel it doesn't have to be super fancy. Just memories. I lost my father at a very young age- 4 and have no memories, I love anything that was given to me and hearing stories from family. Maybe you could enter some memories for her as well. Just some thoughts. Take care and hang in there

EVIE- CONGRATS ON YOUR SUCCESS!!!!! I have a daughter who also has CFIDS and she was also diagonosed around 2000. She has made many adjustments to her schedule and transf. from living on campus to living at home and going to school at night. She has missed all that comes with being a traditional student, but is doing well with the current changes. It is also her dream to travel, semester at sea or anywhere-- she hangs on to that goal just as you did and I know she will get there. What is your major study? Thanks for posting.

Willows- Well it sounds like you have had quite a week! I hope your son is now feeling better. You are both doing great on your weight loss. Congrats to sticking with it, despite the bad health days!

Another member of the TMJ club, had it for years and worse lately. I have apparently been a teeth grinder for over 30 years, but didn't know it. My college roomie still teases me about the night she stayed awake to figure out what the heck the noise was coming from my side of the room!! I have chosen not to use the mouth guard, as I feel like I can't breathe.

Jacquie- Well I have had this done twice and my experience was very positive. Didn't remember a thing and had no problems after. I can say with all the procedures and tests I had, this was a piece of cake. My cousin had it as well-she said the same thing. Sorry- just wanted to be sure that you do have someone taking you?? I was pretty sleepy the entire day, but actually felt better physically. I am sure it was the drugs!!

Hello Sky and Welcome- I am still new here and learning myself. Things really turned upside down for me a year ago after going on a flight to Nashville of all places!! We were going away on vacation and I suffered some ear trauma on flight and was on a lot of medication for this. Long story, had CFIDS and NCS before going, but nothing like the problems I have now. I find it ironic and very frustrating that the leading research hospital is in Nashville!!! If I had only known, I would have figured out a way to see someone there. It would have been interesting to see what would have happened, if instead of going to the outpt. clinic in Nashville that I was referred to by the hotel, that I had gone to the Vanderbilt hosp. With my history, I wonder if anyone would have picked up on anything there!! Well, I have no desire to go back after the flight experience and the 18 hour drive home, as we couldn't fly. So I am hoping to learn here through the experience of others and working with my physicians. One of the physicians thought I may have MSA, one specialist says no-but something is clearly not right and symptoms still persist. He thought I was too young for MSA. So I continue on the journey to sort out treatment for the symptoms and official diagnosis. Truly ironic.

I understand that this is a normal experience for many here, but I am not sure I agree with your MD and cardio saying -don't go to ER. I understand they know your history and want to save you time and money, all good things, and if you feel you are able to wait for call back- but I know how alarming this can feel and you must know your prior experiences-so I see the ER as appropriate if in doubt and can't get quick call back from MD. Someitimes one has to wait for some time for that call back. Just my thoughts. Hope your feeling better- did you say you are doing monitor? That will give a better picture over time.

ditto------------ right there with Morgan. I feel more comfortable being at home, due to symptoms. May feel symptomatic without warning and god forbid I need the bathroom, there is no waiting. For me, mobility is a real issue. This being said, I realize that I need human contact-so this forum certainly helps, I do sit on my porch that I love and enjoy friends and family-who come to me. With people coming here, I can lay down when needed. I do feel others think I should get out more, but they don't understand what the payback is. Have to do what feels right for me and build up the going out on good days. Right now I agree-when no doctor apts- I am thrilled. I do occas. ride with husband as well.

My first thought in reading your post was GERD as well. I agree that dift. meds work for dift. people. I have been on Nexium, Prilosec,Zantac in the past, now Protonix. Was doing well until recently. Having a real bad week for some reason. I take my Protonix at night. Have you had Gastro consult or just ER doc? Lori- that does not sound like a fun test at all. Never heard of that. Did you have endoscopy as well? I also feel that there has to be vagus nerve involvement, I often feel bloated and like everything is just pooling to stomach several times during the day, very dift. than what my normal GERD experience was until past year.

Well not the way to go find good air conditioning Jacquie-lol- Seriously, sorry you had to make the trip and hope you soon feel back to the norm for you. I also seem to be having a rough time the past two weeks, as if it wasn't bad enough already. Thought it was heat realted, but staying cool, so not sure what is up. I also woke from sound sleep, with the old adrenalin flowing and heart racing-BP was up some for morning read for me and HR was also up for me. So laying low today and hoping things will turn around. Lots of Gastro stuff the last few days as well, not sure what that is about as I take meds for GERD, been real bad for some reason. Well lets hope for a better day. Take care.

Yes, I do have this as well-all the same places and more. Have a lot of muscle ,nerve, joint stiffness, pain-all of it. I cycle through days where it is worse than others. Movement is difficult in general for me. Today the heat was a killer, as for many I am sure. Inside with a/c going all day right next to me, if I move to warmer area, feel achey, pain, unable to breathe, lightheaded-the usual. Have to stay where I feel cool air moving.

Morgan- I hope that you will somehow, with feeding tube or not, be able to at least get enough strength to get out without fainting on your son's front lawn! My goodness. I am sure your family is used to this, but still frustrating for you I am sure. Sunfish, I also thank you for the website. My situation is not the same as yours or Morgan's, but at several times in my life, I was unable to eat and keep food down,was losing weight, etc. -so the information is handy should I run into this again. Thanks

I have had very similar experiences, waking up early morning with symptoms such as you desribe. I always debate hospital ER visit or not- hard to know at times. I would say this would be worth calling your physician about. When in doubt on chest pain, as you described I would call for medical advice. My physician's office doesn't mess around with chest pain, not sure of your full circumstance. Have you had cardio eval?

I can't imagine being in the military and even attempting the physical requirements, one standing alone, would be enough for me. Incredible strength you and your friend have. My brother-in-law was there as well and he is in his mid 50's and was thinking more of retirement than going back to war. He is a Vietnam vet as well. Anway, he had quite a time trying to stay hydrated with all the heat and he had many care packages sent from family, friends and church to give him extra nutrition as well. I really can't imagine how you would be able to function at a level of alertness even to serve there with POTS. You and your friend are making great sacrifices for us, just trying to serve with your health concerns.

Melissa- I just wanted you to know, as a new member, that I have really enjoyed reading your posts. I hope that you will continue to educate, inform and converse freely when you are feeling well enough. I have great admiration for those working so hard to keep this forum going. I am not sure how the admin. team manages it when they are also battling their own health problems, such as yourself. You seem to have an amazing outlook on life, a wonderful family and deep faith- but everyone still needs time to just absorb, process and grieve what they are experiencing. I think if people were more specific with some of their experiences and stories, we would find that we have even more in common. It is difficult to write and express our true feelings sometimes, for many reasons, but I am glad you did-even if it takes several attempts at rewriting. I also do lots of rewriting-as the brain just isn't working like it should these days. I wish you the best as you enter this next phase of treatments.

Your post is encouraging to know that things can change. I was hoping that after a year, my body would turn around. I have my mind in the right place many times, believe me-but the body isn't in the right place. I do believe in mind/body connection and that is why everyday, even at my bottom of bottom days - I try to focus on movement of any kind. It may not be kickboxing or weight lifting, but it's moving. Small steps. I did get motivated to print off once again, another combination of simple exercises. I can even do some in bed if I have to. Glad you are doing so well--

Morgan- you write like a true veteran of this illness! Some very interesting points. Your comments regarding the ability to treat the illness and it's difficulties -trial and error,certainly seems to be my experience. Many times I have stated, that when people talk about cancer or other well known diseases, HIV,etc. -people respond and know how serious the illness is. Far more public awareness and understanding from the public, family, friends, medical profession,insurance companies and money for research etc. -hopefully someday we will see the same and more physicians who feel encouraged to research this as a specialty. I have also worked with physicians for many years and most were hard working, compassionate individuals-who work endless hours and I really would not want to be in their position everyday. Of course, we all have our negative experiences with physicians, myself included-but I will keep trying until I get one that I feel I connect with, more important to me sometimes than the diagnosis. I am thankful that although my MD and I don't always agree,for sure- HE KNOWS Me and that is worth a million specialists or fancy tests sometimes. I am open minded and understanding in regard to people wanting to try and learn about new options for treatment and testing. I just agree - do the research and make sure the benefits exceed the cost, in all areas. That's how I look at it. Will I benefit, physically or emotionally--

Jacquie- I am having a bad day too, HR was up this morning and BP down, woke me up. Not sure about your IBS, which is a problem for me, but whenever I am symptomatic - I will need to use bathroom and can't wait because my HR and BP will elevate and I will feel horrible. It then will go down after. I sometimes will feels shaky for awhile after as well. I don't worry about my heart rate as much, because they are so varied, unless way out of line for me. Not that I don't check when symptomatic, but I just try to get through the symptoms that drive me crazy. If they are way out of line for my high or low I worry. IBS is something usually pretty on going and chronic. I am not sure if that is your experience? I will fluctuate between can''t go and can't wait -if you know what I mean.