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wareagle

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Everything posted by wareagle

  1. Hi guys...I was just wondering if any of you have tried taking electrolyte pills or tablets. I have a tentative dx. of IC and all of my electrolyte drinks have citric acid in them which irritates my bladder. It's really frusterating b/c I get a lot of my daily salt from drinks...I add it to Propel and now I'm not sure what to do. I've looked at all the sport drinks and fitness waters and of course they all have acid in them. Any ideas? I used to take thermatabs but they really don't have a lot of sodium per tab. I'm worried I'm not going to get enough salt w/o my drinks.
  2. Good to "see" you Melissa! I hope that things go your way and you're able to get home soon.
  3. All I've ever taken is the generic so I can't compair it to the name brand...but I've taken it for almost 3 yrs. now and from what I can gather it works the same. Pharm. companies often do this with drugs when there are a lot of generics available b/c it gets to expensive for them to compete...same thing happened with my b/c pill. It ***** trying something new...I'm leary of generics too. Hope everyone is okay with the change. Perhaps another company will pick it up and start producing it...that happens sometimes too.
  4. Melissa, You're in my thoughts and prayers! I hope that you are recovering well from the surgery and will be pain free soon! Thanks for keeping us updated Emily.
  5. Hello "me again"!! It's good to 'see' you back on the boards. Sorry to hear you had to go through so much confusion...it's so hard to get an accurate diagnosis especially with dysautonomia. I'm glad that you've found a doc. that has a handle on things and can start to give you the proper medical care and support. I hope that things start to improve for you soon now that you'll be getting some treatment. Take care! Michele
  6. It's good to see your name pop up Carmen! I'm so glad you've been doing well this summer. Sorry to hear about your shoulder...hope it heals up soon for you and your able to get back to the level of health you were experiencing before the fall! Take Care!
  7. Thanks for the update Emily and Nina. Melissa, I hope that they get the sepsis under control soon and are able to give you some comfort...you are in my thoughts and prayers. Take care, Michele
  8. Just wanted to check in and let ya'll know everything went fine yesterday. Now I just have to get through taking these antibiotics! The doctor said everything looked good...no lesions, no cancer...and that's about all I remember him saying. I'll call his office on Monday to get the whole scoop. Will give a further update later...thanks so much for all of your support!
  9. Wish me luck!! I go in to the hospital for 7:30 am and the procedure should start at 9:00. I'll be in the OR under anesthesia for the tests..they'll do a biopsy of my bladder and hydrodistention only if the docotor feels it's needed. I'm looking forward to having this over with! I'll post an update when I can...love to you all!
  10. Congratulations April! Welcome to the world Madelyn!
  11. (((Hugs))) So sorry for your loss.
  12. That's great Nina! My solider has an e-mail too and I've actually gotten a couple of responses from her already so I hope yours can do the same. I actually printed out a list of items for care packages from the "Soldier's Angels" forum. It's been really helpful in giving me ideas of items the soliders really need or like to receive. Some people get really creative and do theme packages..don't think I'm up for that yet...but they do have a lot of great ideas. I'm so glad so many of you are interested in this. And remember there are a lot of orgainizations out there for supporting the troops..maybe even one in your area, so if this one isn't for you don't give up...there may be another out there that fits you better!
  13. Okay guys..the name of the organization is "Solider's Angels" and the link is: soldiers angels This is just one of many support organizations for the troops...I read up on it before I joined and from what I can tell it's a good one!! Like I said before there is NO cost and you can tailor your involvement to suit your energy level! Let me know if any of you decide to do it...happy "adopting"!
  14. So I finally had to schedule the cystoscopy for my bladder issues. I've been putting it off as I am a whiney baby weenie when it comes to procedures like this. The Urologist is leaning towards a possible IC diagnosis for me...Yay...another chronic condition! As some of you may have read several weeks ago I opted not to do the potassium sensativity tests as whiney baby weenie me felt if I was going to have to have the cysto ANYWAY there was no reason to put myself through anymore potential pain. So, I've got the cysto set for Friday Aug. 3rd...yikes that's coming up soon...only like 3 weeks away. I will be having the procedure at the hospital in the OR under sedation. I asked my POTS specialist if this was okay and he said whenever a doc offers to sedate you for a procedure you should take the sedation...so I'm doing it. Not that it doesn't make me nervous...but the idea of a camera traveling through my urethra into my bladder trumps my nerves...I want to be OUT when that happens!! The Uro said he doesn't know if he'll do the hydrodistention or not and will decide once he's in my bladder...so I won't know how much recovery time I'll have until I'm fully awake. I've heard the hydro. can cause some lingering discomfort so I'm trying to mentally prepare for that. I know that several of you have been through this before and I'm using that fact to give myself courage!! I just wish that all these diagnositic tests weren't so unpleasent. I mean why can't we have tests that involve eating chocolate and getting our feet rubbed? Nothing scary about that...unless you're ticklish! Take care my friends...hugs and love to you all!!
  15. Hi guys..I hope it's okay to post about this...I didn't figure it was really political or anything that would offend anybody. I'm really excited...I've "adopted" a solider through a support organiziation (I don't know if I can say the name or not so I'll wait for Nina or Melissa's okay on that). I've wanted to do something like this for awhile but only recently started researching it. I found a wonderful organization that assigns you a solider to support. There is NO cost and there are different levels of comittment...for instance, I "adopted" a solider so I'm responsible for writing one letter a week and sending at leaste one care package a month for the length of their deployment (The care package can be as simple or lavish as you choose). If that's too much for a person to do then you can also join as a letter writer and simply indicate how many letters a week you can do and they e-mail you the name of different soliders every week. My solider is a female in the Air Force and I've been writing her for several weeks now...I can't tell you how good it feels to actually be able to DO something. Ever since I had to stop working (4 yrs now) I've been struggling to find things to fill my days and make me feel like I'm still contributing some how to this world we live in. It's so hard...especially on those days I can't even muster enough energy to sit up long enough to take a shower! I know this whole thing is supposed to be about supporting the troops but I must say I think I've gotten just as much from it as my solider! Anyway, I just wanted to let ya'll know what I've been up to. I know that we're always trying to find hobbies and interesting low energy tasks to do. So many of you are such wonderful writers and have so much to share I thought maybe this would be something you'd want to think about doing! Take care my Potsy friends!!
  16. Good grief Nina!!! I'm so glad that you are doing better...what a week you've had! I hope that you can finally get some rest and start to heal...continued good thoughts coming your way. Thanks for taking such good care of our Mouse Teri!
  17. Glad to hear you're back home and on the way to recovery Nina!
  18. Nina...I'm hoping that by now you are resting comfortably after your surgery and that everything has gone well!! You and your family will be in my thoughts...sending healing energy your way!
  19. Angela, I take florinef... but only 1/4 tab a day. I've been on this dose for a couple of yrs. now...just recently started adding another 1/4 tab. at night every couple of days. For ME I can't tolerate anything higher...not even 1/2 tab. I would get a bit tachy. and paniky when trying to take a higher dose but it would pass pretty quickly and then I'd just be really tired and out of it. I definately benifit, even from this small dose, and unfortunatly I don't think I'll ever be able to increase it too much. Just keep in mind everyone will react a bit differently to these meds. and sometimes even a small dose that wouldn't typically be seen as "theraputic" can help. Welcome aboard...I hope you find lots of support and comfort here!
  20. Hi Stacey...no info. here but wanted to chime in and say I hope that this will give you some answers. Keeping my fingers crossed that the docs. are able to get you some treatment and much needed relief!
  21. Thanks Pooh! I had actually read this before and was wondering if this test was such a good idea. My uro. is going to want to do a cysto anyway so this potassium test is probably overkill. If it were in some was a substitute for the scope then maybe but since I have to have the scope either way I'm thinking of cancelling this test. Other than the pain my main concern was having a reaction to the Marcaid they use to flush the bladder following the test. I just don't know how I would react to that and it makes me nervous. I forget sometimes that we are the ones in control of our bodies and we do have the right to say "no" to doctors. And since this is NOT a truely nessisary test then I think I'm going to exercise that right.
  22. Hey guys..I'm having a potassium sensitivity test at the urologist on Monday and was wondering if any of you had any experience with this before? I'm a bit worried about this kicking up my POTS symptoms...I know they flush out your bladder after the test with some sort of numbing agent...and wanted to know if this was okay for us. I have a call into my doctor but don't know if I'll hear back in time. Any info. is appreciated!
  23. Hi all..been meaning to post an update for awhile but things have been slow going in dx. these irritating bladder issues. I am seeing a urologist and so far he has ruled out any kind of infection (even did a round of antibiotics too make sure) and now we're moving in the direction of a possible IC dx. I did the pelvic pain questionere and based on that he wants to have a Potassium Sensativity Test done and then most likely a scope. Yeaaaahhhh...not really looking forward to ANY of this!! I go in for the PST in a couple of weeks...then probably won't get the scope scheduled for several weeks after that. I've been keeping a food journal right now to see if I can pick up any kind of pattern as my symptoms do wax and wane a lot. I know that several of you have experience with IC and any advice or info. you want to share as to the dx. procedures and treatments you have tried would be welcome. I've done a lot of research but it's so hard to say how a person with POTS is going to react to all of this. It's just so frustrating..everytime I think I'm getting a bit ahead of POTS something else hits and just drags me back down again!! Last year was the gall bladder and now this...yet another disorder that has an unknown cause and limited treatment options. Sheesh! At leaste with the gall bladder the problem was fixed once I had the dang thing taken out!! I hope that you guys are doing well....glad to see you back on the boards Melissa, hope your urethra is better Emily, thanks for your help Pat! Love to you all!
  24. Morgan, You and your family will be in my thoughts and prayers... Take care
  25. Happy Belated Birthday!! I'm so glad you had a good one Lisa!
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