morgan617

paige, they told me when i called them for about the third time. i also actually got a letter stating they had to give me a decision in 120 days. so it was even in writing. i had a local person assigned to me and she said that was correct. morgan

i have to tell you, my hubby got yesterday off, very rare, so we went on a few errands. by the time we got to the grocery store i was walking through molasses. i told dave i was going to the car. i met my daughter in laws mom, so we chatted for a bit, then i said well bye. she asked me if i was driving and i said no i haven't driven in over a year. i was just too tired to stay in the store. she opened her mouth and i said, do not tell me i look great! she said no, i wasn't going to let you drive because you look like h$#%. whoa, stop the press, someone actually saying you look like you don't feel well. just in response to your last sentence julie.... sorry you are feeling so badly. i think i'm glad i'm not going all the way across the country, because as good as these guys are, they still aren't a lot of help a lot of the time. i hope the other things bogging you down clear up soon and am glad you have a very supportive hubby like me. feel better soon, hugs going your way!!!!!! morgan

yes gayle, a lot!!!!! you shouldn't feel anything but the full bladder. it's called anesticon i believe. make sure he lets you lie there for a few minutes before he does the procedure so you get the full effect. good luck, you'll do fine and probably discover it wasn't nearly as bad as you expected. hugs your way, morgan

when you are constantly under barrage from your own body's fight or flight response, it's just about impossible not to have anxiety. i know a lot of people on here benefit from low dose anti depressents. that sounds like it might be a good option for you. i have just found over time, if i sit quietly and tell myself this episode is going to pass and i know i'm going to feel drained, but will be ok it seems to help some. i unfortunately can't take antidepressents, so i just talk myself to death about how it's not lethal and it doesn't last forever and i've had worse things, (colonoscopy preps lol) and it does always pass. till the next one. but you might try the med route as sometimes we get stuck and then develop a generalized anxiety, just that vague feeling that's always there. my son has it and uses celexa. it works great for him. hope you feel better soon. morgan

time for a new doctor shanna, sorry you have to deal with this. but it's the doctor that approves the handicap tag, and there is no spot for tachy. just can't walk far etc. nothing really really specific. so he's being a total jerk. did you say you were a student? you might be able to get a disability tag from the scool. see the disability counselor and explain your problem. my son has one. it won't help you anywhere else, but that's better than nothing! new doctor time. morgan

paige, don't give up. if you work and exceed their limits you get rejected for sure. we lost everything too. i know this is not fun, but i was told the state had to respond within 120 days. i would call and ask about your right to hear something within that time frame. i found out on the 120th day. exactly. so depending on when you filed, they should only have that long. morgan

gayle, he will probably do a cysto on your first exam. it only takes a few minutes. it's kind of like a gyne exam. doesn't take any longer than a pap smear really, so don't be surprised if he does one. they just insert a small catheter after they've deadened the urethra and fill your bladder to capacity with warm saline, then he just looks around in there for a bit. really the most uncomfortable part is that your bladder feels very full, but he empties it out. you will give a sample of urine when you go in and then they will cath you with a very tiny catheter to see if you retain urine. trust me, even tho this is not fun, you have had far more barbaric things done, so don't stress about it. it's only uncomfortable for a couple of minutes and no drugs to react to. but you will know immediately if there's a problem. i've had about 10-15 of them. it will be fine morgan

my potassium has always been low. i had a doctor give me a diuretic once and after two doses it was 2.5. lethal level. i felt like a wet wash cloth. i think the pots really messes with the body's ability to maintain correct electolyte balances and potassium is the easiest one to drop. who knows why, except stress on the body affects everything and there's nothing that stresses our bodies more than constant adrenaline rushes. this disease has so many aspects to it, Lord only knows what can happen. morgan

now they have stuff that makes it much more comfortable. not so bad afterwards either. i tore my urethra with my second baby, talk about peeing fire!!!! morgan

sorry, always, ALWAYS pee right after sex. it washes everything out of the urethra. any germs or anything. remember how close that urethra is to the bladder. flush it after fun. morgan

i posted, but it didn't go thru and it was such a good one too. dang, lol. i don't think the government spends nearly enough on us and if there's a chance they can find something and go oh me oh my, and then want to do more then go for it girl! who knows what the ripple effect could be! morgan

gayle, yea that's a fair amount of time to be on it, it is not a drug that i've seen given for uti, but if you can't take anything else..... we usually gave macrobid for 5-7 days so emily's isn't really long enough. weird. you should still finish the entire thing tho gayle otherwise your body will stop responding to it. i think i remember you saying it's the only antibx you can take. i'm glad you got your appt. it is very important to find the cause of this. sometimes it's simple, like honeymoon cystitis, which you can use your imagination on, sometimes for some reason you just get a stubborn bug that won't leave. the good thing about cultures is that they will tell you which drugs will treat infections. a lot of gals get recurring infections because they are getting an antibx that doesn't kill the particular bug in their urine. frankly i think all urines should be cultured so you get the right med. and anytime i get antibx, i get a script for a yeast infection too. for a lot of people you trade one for the other. the joys of womanhood women are much more prone to these problems because our urethras are very short, only about 1 1/2 inches to the bladder, so it's a very quick trip to the bladder. the trade off is, men have a harder time with the cystos, because of the length of theirs. also it sits right in harms way at the opening of the vagina, so is easy to get irritated from any number of things. (will never understand thongs) including pads, tampons, sex, even drying yourself too roughly after peeing can cause problems. but regardless, we need to find out whatever the culprit is that is giving us problems. we have actually had women come in and the only time they bled was when they peed, but the bleeding was coming from an irritated cervix! that's why we need to be strong advocates for ourselves. so good job girls, i'm proud of you all! morgan

gayle, please my post under dancing light. thanks morgan

be sure and take the macrobid with food. and i find it REALLY strange they didn't do a u/a. emily, the urethra is very small and can be pretty difficult to find yourself. i mean to put lidicaine in it. they use it when they do cystos, but i don't know of anyone who does it on a routine basis. i think you were talking about getting your urethra dilated ling? that does help with hesitancy and poor flow and retention, but will not help ic. two separate issues. however retaining urine does promote infections. gayle i would still recommend you see someone as you have had blood and now an infection in such a short period of time. if there was no infection, where was the blood coming from? hope you feel better soon emily and it's an infection that clears up soon. i guess i don't know about otc because i seldom use them. they aren't contolled and you never know what's in them. i used some eye drops and thought i had pored acid in them. my opthamologist said that even the preservatives in some things are more wicked than the problem. so i get drops without preservatives. my point being, if you are not sure what's in it and most of us already react to everything, just get an ok from the doctor for otc. just my opinion. just my itty bitty suggestion....morgan

gayle,you are correct, an ultrasound will not show ic. and cranberry pills and juice do help neutalize the acidity of urine to help decrease burning. the only way to see the lining and check for ic is cysto. but the renal u/s is good, showing no major abnormalities. it would appear to point more towards your bladder. sorry about my spelling and stuff, major visual problems tonight. good luck and be firm on this! morgan

welcome to the board and just want to reiterate what everyone else has said. hope you get better very soon! morgan

i almost always have a cough trigger with my arrythmias. my hubby always knows when i'm having them because it's a weird sudden cough. i go through spurts where i have jillions of them and then none for a bit. but the darn things always come back. morgan

i also find that if i keep my hair shoeter i have less of a tendency to lose it. my hiar was fine and thin to begin with, and i have lost a lot of it. morgan

gayle, i know a ton about ic. it is never normal to have blood in your urine, especially if you are not on your cycle, and they don't see an infection on a dip stick, which by the way, if they don't , it should be sent to a lab for a culture. if two weeks out you are having any symptoms, like frequency, lower abd pain, irritation in the vaginal area, peeing small amounts, but feeling like you have not emptied your bladder, or any other symptom, you should see a urologist. hmo's are so notorious for not wanting to refer people. if you have a gynecologist, there are usually certain times during the day you can just go in and leave a sample. they will tell you if there is blood in your urine. then you have documentation from someone besides your hmo, who is being less than cooperative. we just had people wait while we dipped it, so you found out right away. a urologist can tell you if the blood is coming from irritation in your bladder. if you are having hematuria and it's not from that, you need to find out where it is coming from. like i said, i've had ic for 20 years, ,i see a urologist every few years just to make sure the blood is still from ic and not something else going on. i have NEVER actually seen my pee bloody, it's always on a dip or microscopic, so don't assume if you can't see it, it's not there. when mine was first discovered in a routine lab, i had a cystoscopy, and also ct of my kidneys to make sure they were not having problems. my kidneys are okay, but my bladder is not. and it would be nice to try and prevent further damage now as opposed to waiting until you are miserable all the time. so, in a word yes, if you still have blood in your urine you need to see a urologist. hope that helps, and good luck!!! morgan p.s. that is crap that it's normal to have bladder pain or problems, don't let them get away with that. sorry, but that just fries me!

gayle, blood in the urine is a cardinal symptom of ic. it's usually only mild however. i have had hematuria or blood in my urine for 20 years. you can't see it, only find it on a dip. so if you are passing large amounts of blood in your urine, you need to see someone. soon. i agree that a bladder infection needs to be ruled out, but they tend to have an acute onset, it doesn't matter whether it's day or nite, and you feel very sick from them as a rule. when i worked for an ob/gyn we had walkins every single day with uti's and these gals were so miserable, and usually had obvious blood in the urine. it's never a bad idea if you have chronic symptoms to get a cystoscopy and have a urologist look at the bladder wall. and your urethra and also to see if you are actually retaining more urine than normal. it is not a very comfortable procedure, however they do anesthetize the urethra. it only takes a few minutes and is done in their office. they can tell a whole lot by one look at what's going on. i know, i know one more barbaric thing. but it can be something that can be serious. ic usually can be treated and they have come up with a lot of new things to treat it. so it's worth a look, so to speak. morgan

i go through this every night. it drives me crazy. i do have interstitial cystitis, which is a chronic inflammation of the lining of the bladder. i've had a few cystoscopies. i also have a very tight urethra, which makes it hard for the urine to pass, so i pee like an 80 year old man with a prostate the size of a football. lol that's what i tell my doctors i have. bph. just dribble away. anyway, i can't tolerate the medicine, so just have to deal with it. sorry anyone else has to go through it, as it is so annoying. and mine seldom bothers me in the daytime either. i also will sometimes have a bladder spasm AFTER i've voided and will have a tiny little spurt of urine come out. that is also quite fun. it's not even a sneeze or cough thing. it's after i've emptied it. ahhh i love my body..... morgan

sorry you are going through this. the crashes just suck. i can't get the energy to clean my house and i'm telling you, it's bad. i've been showering every other day for the same reason, now i've gone three. i wish i could help you. maybe you should go into the hospital, because at least they are trying something. have they checked a theophylline level? that may be a place to start, because it's a drug you can easily get toxic on. maybe just start there. best of luck, morgan

http://www.levaquin.com/about/important_info.htm idon't usually put up sites, but found it very interesting that if people are going to allergic reactions to this drug it is after the first dose! i would certainly not take anymore and list it as an allergy! i am so sorry this happened. hospitals are just getting more and more awful, and there seems to be no solution in site. if he continues to have problems you might try some otc benadryl which is commonly used in drug reactions. how they got bronchitis out of this is so beyond me, i can't even respond.... morgan

hopefully, you will not mind my butting in. last year at this time i was so ill, i was sure i was going to die. i am not a whole lot better now, but then i had had to stop working, we had to sell our house and we had to sell our car and get cheaper ones. i have to tell you, i loved that car. it was a subaru r/s and i know my husband loved it too. so there i was, sitting useless, day after day, after working my whole life, watching my husband work so hard, knowing it was my fault we had to sell our house and get a cheaper car. i felt like Job, i must say. although Job was such a righteous man and never doubted the Lord. then one saturday in september i found out that my very best friend had just had a tragedy no mother should go through. her son had killed someone. you would have to know this man to find it so incredibly unbelievable. he had called her to tell him he had to kill himself and just wanted to hear her voice one more time. she talked him into turning himself in and he was placed on suicide watch. she has three other adult children, but they have never been a real support for her. she traveled 10 hours to where he was with her daughter. her daughter made it clear she could only stay a couple days. i looked at my husband and he said pack your things. he called his work and took a day off and drove me down there and brought her daughter back. we stayed for a week and a half. we had to go clean and empty the house where this nightmare occured. she was not allowed to see or talk to joshua. she just moved like a zombie. i made her eat and shower, and even tho i was feeling so awful, i made her take me shopping. i tripped and whacked my big toe and fractured it. and as much as it hurt, i heard her laugh for the first time in days, because i was laughing so hard , even tho it was sooo painful. after 10 days, i convinced her that she could do no more and needed to come home. she agreed. when we got back, she held me for 10 minutes and said i never could have done this without you. joshua is still in jail awaiting his trial. they can find no one to say anything for the prosecution, not even the family of the victim. he is going to be in prison for a long time. the chances are she will not see him free in her lifetime. my husband came to get me from her house and as we were driving home, he said how were you able to function? i said i just prayed everyday for the Lord to give me the strength to help my friend. and he said, look at it this way. you always question why you became so ill. if you had not, you would have been working, we would have had a car with bald tires that wouldn't have gotten us to oregon, and we wouldn't have had a little extra money we got the day before this happened from selling the house. you would not have been able to be there at all for your friend. i must tell you i walked around on that broken toe for 4 days and waited till i got home to check it out. my friend said, if it was broken i wouldn't be able to walk. it was a very bad break actually and i was in a cast for 8 weeks! when i got home i was very ill and really don't think i've ever recovered, but while i was there i did things i never thought i could. and if i wasn't plagued by illness, and things hadn't happened like they did, i never could have been there for my very best friend. Have you not known? Have you not heard? The everlasting God, the Lord, The Creator of the ends of the earth, neithers faints nor is weary. His understanding is unsearchable. He gives power to the weak, And to those who have no might, He increases strength. Even the youths shall be faint and weary, and the young men shall utterly fall, But those who wait upon the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint. Isaiah 40:28-31 morgan

me too. more of the head rush if i bend over and the pulse in my ears, but have felt my eyes pulsing. too dang bizarre!! morgan