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I see my Uro tomorrow and I don't want to go on with the PT. Him and my PT are really excited about how it has been helping but I just don't really want to be bothered with it anymore. I stopped doing the exercises and walking. Do I just finish the month out and say nothing or tell him tomorrow and quit? I'm thinking she will be mad about it but I know he will understand why.
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Hummm... Just wandering if it was helping why do you want to quit?
But if you feel strongly about it just tell him the truth, tell him how you feel about it.. He seems like a very good doctor so im sure he will understand..
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Nothing in my life changes. It's a long story. Thanks for the replyComment
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Im sorry you feel that way Mary...
I wish I could do something to help you feel better.. I do understand you suffer with pain everyday.. I honestly feel for you.. I am so grateful that I do have some good days..Well you know if there is anything I can do please Pm me.. You are a great person and I am always here for you..
RondaHugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Waterflow
About your statement,"nothing in my life changes," if you think about it, every day changes in some manner. Perhaps what you mean is things in your life seem to change slower than you would like?
The good thing about slower changes is they are usually more permanent than the quick fix thing.
You sound really down today, I am sorry you feel so blue. If PT is helping and you are not paying out of your pocket to go, maybe tommorow you can rethink some of this?
Sammi
Sammi
Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
Diagnosis: IC, PFD (both in remission)Comment
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If you are getting help, I would continue to go. However if you have made your mind up to quit, I think it is only fair to tell your uro and PT. If you are on any ssd and the question arises about quiting pt and you were having success you may lose your benefits.
You have a whole life ahead of you, don't give up now.'The will of God will never take you where the Grace of God will not protect you.'
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I THINK that Mary posted before that she couldn't get the full PT covered anymore. She said that it only helped when she did the back massage with the heat and she can't get that done anymore. She said all the other PT is worthless without that so she doesn't want to continue it because it just gets her hopes up and very soon she won't be able to do it anymore. Maybe I have it wrong Mary, I just thought I read that before, which would make sense to me why she wants to quit now.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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Hi Mary,
Just want to let you know that IF it is the insurance coverage issue that is why you want to quit, that you do have the right to appeal within the insurance company & up the chain of command to the insurance commissioner. If the PT is helping you, maybe your doctor could help with the appeals process.
On the other hand, if it is due to depression that you want to quit, I would encourage you not to. If your emotional state is keeping you from doing things that are helpful to your physical recovery, then it is time to seek some help from a medical social worker or counselor.
People seek help for far less things than what we deal with daily from IC & I would bet that many, if not most, of us have had some level of counseling to deal with what a mess IC can make of our lives.
Hang in there & if something is working, fight to keep it!Kadi
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
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Oh well if that is it, I surely understand.. So will your dr and pt.'The will of God will never take you where the Grace of God will not protect you.'Comment
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has the PT made a difference to you? I think you started Pt about the same time as me. My uro wants to see me after 8 visits, so 2 more to go. My PT therapist asked me if I have noticed a difference, No. Am I feeling better ,no. I think that in the 6 visits I have been to only 1 week I felt ok. My pain is much worse. I was in such pain today I left work a couple hours early but that was only possible because it was slow. If my insurance was taking care of 95% I don't think I would continue. I don't want to do it anymore either so I feel the same way. I keep hoping that maybe it will start to make a difference so I am scared that if I stop I won't get better but scared it will make it worse!mom to 3 wonderful kids
IC symptoms 7/03,
hysterectomy 11/04,
prolapse cervix 7/07
diagnosed: IC 2007
IBS 2008Comment
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It's always a good idea to be truthful when dealing with your doctor. He/she can't know to try different things without knowing what you are doing and what's working (or not working) for you. And if it's finances that are stopping the PT, your doctor may be able to help you with your insurance appeal.
Hugs,
DonnaStay safe
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Mary,
I am sorry to hear that things didnt work out with Physical Therapy. I was really hoping that this would help you and finally bring you some much needed relief. I do agree with the others that it is best to just explain to them why you arent able to continue with it. I am sure you wont be the first to discontinue it for the reasons you have. If it is helping, they may know what to do to help you continue with your sessions. If it isnt helping, then they need to know that too, so they will know how to proceed in managing your care.
Please dont be distraught over this situation. If it doesnt work out, there are still lots of other things to try. If some of it is helping but some of it makes things worse, they may be able to modify it for you. If it is too expensive, they may know of programs that will cover it or loop holes with your insurance company to help get it covered. They have so much information and knowledge of services at their disposal. But, they cant use any of theirs to help you if you hold back the information on your end. Does that make any sense? (If not, it's b/c it is 2:25 am here, and I am pretty sleepy.
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Anyway, I really hope that once you talk things over with them that you all can work something out to help you start feeling better. Please let us know what happens. I know that we are all going to be worrying about you.
Hugs,
AmyComment
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hello!
I would definately speak with them both in detail. Just remain open to what they say, just so long as of course, they remain open to your concerns and regards. Wishing you all the best.Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.
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