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Sunfish

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About Sunfish

  • Rank
    Advanced Member
  • Birthday 12/09/1979

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    muzicmam
  • Website URL
    http://www.freewebs.com/sunfishoutofwater
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    muzicmam

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  • Gender
    Female
  • Location
    Toledo, OH
  • Interests
    i can't partake in many of them anymore, but they're still my "interests" just the same & are by no means lacking in quantity!: rowing, reading, running(anywhere but a treadmill), swimming, coaching & teaching (swimming), singing (from lively gospel to more traditional to a cappella), cooking & baking, piano(classical to pop to showtunes), musical theater (on stage myself or watching), movies, deep conversation, triathlons, children, deepening & exploring my faith, listening to music (from classical to country to gospel to alternative rock to folk), cello (especially in a string quartet or full orchestra), riding (horses, that is), Bible study, hiking, reading, writing, talking & spending time with friends, learning new things, school (yes, i've always like it), animals, long late-night conversations, time with family, learning about family history, praise & worship, some crafty stuff (esp. knitting, beads/ jewelry making), gardening, using my life experiences to help others, camping, anatomy/physiology (not just b/c of my health), patient support & advocacy, traveling, hands-on volunteer work

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  1. i'll try to make it back to chime in re: discussion, but for now here are some links that may prove helpful: here are a variety of "gastroparesis diets" from various sources to perhaps give you some ideas: http://www.healthsystem.virginia.edu/inter...sisDietTips.pdf http://www.healthsystem.virginia.edu/inter...ARESIS-DIET.pdf http://www.acg.gi.org/patients/gihealth/pd...stroparesis.pdf http://www.gicare.co...ted/edtgs08.htm http://www.g-pact.org/diet.htm they vary greatly in terms of detail & i apologize if any are now "dead" (as i copied & pasted from an old post). i'll check them &a
  2. i have several thoughts but first one additional question for you. does your wife still have the original port-a-cath? i know fevers started before it was placed, but there's still a reason i'm asking. off to sleep for now but i'll await your answer & then reply at length. your wife is certainly lucky & blessed to have you. melissa
  3. first and foremost, i'm sorry that you're feeling so overwhelmed at the moment, and quite understandably. my following comments are not in any way intended to minimize that you certainly have a lot on your plate. i do have some thoughts - and quite a bit of experience - with part of what you're dealing with. some others who have commented have equated/ compared a literal dismissal/ refusal to treat by a physician to the type of dismissive attitude many of us have encountered re: certain symptoms, etc. over the years. while neither is enjoyable, i would argue strongly that they are not on t
  4. good to "see" you ernie, and certainly very happy for you and all the positive changes in your life. enjoy and keep dancing! melissa
  5. just to clarify, dr. grubb's wife has NOT died. she does have a very rough cancer diagnosis but is still fighting. and while his wife's health has/ does/ will continue to affect his schedule, in reality the current proposed waiting time has been similar for years....long before she was ill. and yes, if you truly want an appt, persistence is the way to go re: calling the office. they get non-stop calls from around the world - literally - and obviously no one cares as much as you so anyone wanting an appointment should not wait for them to call you (provided of course that you've met all requ
  6. many congrats on your fellowship. definitely very exciting on many levels!! melissa
  7. it might also help to know that propranolol, (also known as Inderal, it's brand name) is very short acting such that, if it doesn't end up being a good match for you, it will be out of your system within a matter of hours. i took a small dose of it myself years ago - in combination w/ other meds - and only stopped due to progression/ changes in my illness/ body, not b/c i was having any trouble w/ the med. i was actually tested on it - and then kept on it - while an inpatient research patient at vanderbilt years back (as part of a medication trial); on its own it didn't do well for me as it
  8. jana et al - concerta isn't an SSRI but a stimulant. it's in the same family - in fact quite similar at its core - to ritalin but is an extended-release formulation such that it very rarely is taken any more than once a day. as with ritalin it's official prescribing use is for those with ADD/ADHD but it is used off-label for some individuals with severe/ disabling fatigue caused by one or more underlying medical diagnoses. as an additional "side effect" these meds are, like midodrine, vasoconstrictors so that they very often raise blood pressure to some degree. i agree that the reaction t
  9. as others have mentioned there have been a LOT of discussions about vandy over the years - inpatient/ research, outpatient, etc. - so a search will give you more than you'll know what to do with. i went as an inpatient research patient a number of years back and wrote a pretty lengthy "report" of sorts upon my return; it's here on the board under "vanderbilt chronicles". of course some of the details in my ramblings are dated but from what i've heard a lot of the "big picture" info is still very much the same. all in all people have had mixed experiences over the years (@ vandy).....good, ba
  10. i've done different things for different docs over the years. as others have mentioned it truly is the thought that counts......far more than the technical "value"/ "worth" of said gift, etc. the best gifts actually tend to be those that are a bit more creative, thoughtful, personal, uniquely meaningful, etc. this doesn't preclude something pricey but certainly doesn't necessitate it either. i guarantee that some of the most meaningful gifts i've given have been on the low (very low!) end of the price spectrum. some great ideas have already been mentioned but i'll add some other that i ha
  11. i'll come back w/ my own response in a bit, but i agree that the numbers on the poll are not likely to give any sort of "real life" picture of members. polls on the forum are never official, scientifically accurate, etc. but BMI options across a more realistic spectrum would likely give at least somewhat of a better picture of where members fall on the underweight/ average weight/ overweight continuum. misspatient if you would like me to change the poll options to better reflect the overall balance of individuals (i.e. options for severely underweight, underweight, average range, slightly ove
  12. glad you saw your doc & hope you're soon feeling better. while it's a bit after-the-fact now, the "official" answer re: dysautonomia & antibiotics is that there is no more chance of any negative reaction than there is in the general population. as you've seen already there are of course individuals with experiences that range from A to Z (and everywhere in between). personally i would have died years ago without hard-core, intravenous antibiotics (many times over) but i am certainly the exception rather than the norm. that said, antibiotics certainly have there time & place when
  13. dr. shields is my fave in cleveland, though in some ways in may depend on what you are looking for in a doctor/ eval. i have written longer/ more detailed replies re: cleveland docs, options, etc. previously so you may want to do a search for those. i don't have personal experience w/ dr. faoud but have worked quite extensively w/ both dr. chelimsky at university hospitals and dr. shields at cleveland clinic (as well as a number of other specialists in cleveland.) if i have a chance i'll try to find my earlier ramblings & post a link myself. hope this helps, melissa
  14. glad that your appt. went better than expected & hope that you continue to have a good relationship w/ the doc....it definitely sounds like you're off to a good start!! congrats...it CAN happen! melissa
  15. there was a similar question awhile back. the specific question posed then was "when to head to the ER?" but many/ most of the issues at hand are the same, as are the main points in my reply/ discussion. here's my reply as copied & pasted from that post: as many others have said in various ways, ERs are truly not designed for those with POTS or most other day-to-days issues related to any of the many types of autonomic dysfunction. in my pre-diagnosis & early diagnosis years i too had my fair share of ER visits, many against my will when i would full-out faint (i was 17 & away a
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