How do I get over this feeling?

[Skynard]

Okay....feeling like a drug addict and hating it.

Growing up, we never took pills for anything. You had a headache - get over it, you smashed your finger - it'll heal. We never even took vitamins! I have carried that over into adulthood and now I am HAVING to take meds for my physical well being and my sanity - and I struggle with feeling like a pill head. This mental block even includes the Aloe and the Cystoprotek. I know if I don't take them when I need to, then I will be heading in the wrong direction. You should have seen me debating the other day about taking two Tylenol! Oh, the drama...The most comical part of this is, my mother NOW tells me, "look, you have to do what you have to do." She is so supportive, but in the back of my mind, I wonder what the ramifications are to taking these meds. What will they do to my other organs over time? Do you just tell your mind that you do what makes you feel better today and not struggle with the what-ifs? The whole thing makes me anxious and then I need my Valium! Vicious cycle. Ugh.

Feeling the bad attitude coming on..........

Skyn

[kadi]

I felt that way in the beginning, but I have had IC for six and a half years now.
There is no doubt in my mind that IC is serious and quality of life destroying, so I am grateful for whatever helps me - diet, medications, physical therapy, instillations.

Every time I take my medicine (oral or instillations) I say, "Thank you God, that this works." and "Please God, let it keep working."

I had a dear friend who decided to stop taking her osteoporosis medication because she didn't want to take that one pill a day anymore.
She broke her hip and the last I heard, it had been over a year & had not healed, in spite of surgery, rest and physical therapy.

Medicines are intended to help us and I believe it is actually irresponsible not to take medication as prescribed in order to get better.

[ICNDonna]

I have to agree with Kadi. If you read any history at all, you will find that life expectancy in the 1800s was something like 45 --- we've come a long way from that --- partly because we eat more healthy foods, but mostly because conditions that killed people then can now be treated, if not cured.

I do think it's important to work with our physicians --- I even asked if it is safe to take tylenol with my current meds --- and was assured that it was okay as long as I followed the directions on the container. I take medications for high blood pressure, high cholesterol, diabetes, and my IC. They are essential for me if I want to have any kind of life style. I'm like Kadi, but would add that I'm happy to be living now instead of a century ago when such things as tylenol were not available.

Sending encouraging hugs,
Donna

[Skynard]

Thanks guys. I'm still trying to work through some of the kinks of this diagnosis and sometimes I just have a bad day. I'm trying to get to that "place", but it is slow in coming!

Skyn

[Jereme]

I'd take the medications if they help. I'm thankful that there are treatments that can make living with this condition bearable.

[nottoc4]

I take lots of pills too and once in awhile want to start cutting back on them.
I have given myself a stern talking to about this and am convinced that the pills are necessary for me at this time. Some time in the future I can cut down on the pills but not right now. My other organs are just fine and I have blood work done every 6 months to check the liver and kidneys.My asthma meds I will never be cut out...I can't breathe well without them.

I have to give my body a chance to heal before I can cut down on what is actually helpinfg me.
Please give your body a chance to heal.

[lttlewun]

I also worry about what the long term affects of taking meds will do to me, but I try to wipe that thought out of my mind. There is no point in worrying about what the future may hold. This may sound silly, but I would much rather have quality of life than quantity. That is just my point of view. Believe me, I KNOW it's hard. I struggle every day with this both physically and emotionally. I'm actually having a much harder time dealing with this emotionally. My hope is that we all get to a "good" place very soon. I keep everyone in my prayers always!:)

[123456]

Me too!

[Melanie526]

I struggle with the same problem. I'm so stubborn and won't take my Lyrica unless I absolutely have to, and by that point I'm miserable. However, the Lyrica does save me when I'm having lots of pain (IC or abdominal adhesions). I just worry about the side effects. I did have my liver checked recently, and it was okay. However, my potassium levels are low...I'm sure this is why my depression and anxiety have been worse lately (or at least I've read low potassium causes these issues). Now I'm trying to figure out how to find bladder friendly foods that are high in potassium.

I'm fairly new to the whole IC thing (just diagnosed this past spring).
What exactly are Shaklee Pro/Prebiotics and DH Aloe Vera?

[123456]

Eat potatoes! They're loaded with potassium!

[Melanie526]

Thanks! I do eat some potatoes, but maybe I should eat more.

[suncaro23]

Thanks for that info on potatoes! I didn't know that!
Skynard,
I struggle with the same feelings about meds. I seem to be super sensitive to them and like so many others, I have had to try and discard some and then try something else. It is frustrating, but if it helps in our day to day lives, then it's OK, and for us that is the case.
Wishing you the best, a good night's sleep tonight, and a great day tomorrow!
dawnja

[Skynard]

Melanie -

The DH Aloe Vera is Desert Harvest Aloe Vera. It is a natural anti-inflammatory and the laxative ingredient has been removed that is found in normal aloe vera. That's a good thing for those of us that have IBS as well as IC! The Shaklee Pre/Probiotics I use to normalize the natural bacteria in my colon - also great for us with IBS!

Skyn

[Charisse]

I am so thankful for all the medications I am currently taking. I feel they all work together and help contribute to the healing of not just my IC but my other issues as well. That being said I feel like a drug addict at times with my pill organizer and how many meds I take each day. I feel like people look at me like you are so normal why do you take so much? Most don't know the health struggles I've been through though. Even my poor husband can't keep all my meds straight.

[curlycue]

Kadi you got it going on girl. I am going to quote my friend "Medicines are intended to help us and I believe it is actually irresponsible not to take medication as prescribed in order to get better." I love you for saying that.THANK GRACIAS


I grew up in the school that even if you were on your death bed if you went to the dr you were a weak person, I was born in 5/1970 when I was about 9yrs old I had a relative come stay with us for about 3weeks he had the tyfoid virus (I cant remember the spelling) well right after they left guess who got really sick ME it got the point where I allready new that if my parents did not get medical help for me I would die. I told me mom pls take me to the drs by this time I allready was really sick for about a month it happend 7/1979 I had dropped alot of weight and my parents were just thinking it was a summer cold? my aunts came to see me they said oh yea its a summer cold some said it was a stomach virus and so on. It got to the point I could no longer get out of bed and thats when my mom said to my dad you know what we better take her to the dr she said and I quote her as well cuz I will never forget it" I had a dream last night Ruth had died" so my parents and yes my friend we did have health Insuracne and it was back then Kaiser in fontana califorinia they took me to a pediatrician in Tijuana Mexico he took one look at me and said you are lucky she has not died on you he quickly did blood work and found out I had this tydfoid virus you think the relative had mention something about it never did. Years later I asked my mom what was wrong with you and dad who dosent take there kids to the dr. my mom said "well we never went to the dr and we always turned out ok" never took a pill untill I came here to the united states all I thougth I think I was 15 yrs old OK whatever, now my parents are constantly asking me about my health care and I oftern wonder if they have some guilt in them cuz I have IC Fibro I asked my mother she said yes she does she feels If they had gotten the correct attention I needed at the time I would never have IC.

I am sorry I made it so long girls but thats my little bit about YES take meds if you need them.

[curlycue]

shout out to Charrise as well my husband is in the same situation good thing I have them all writen down when and how and were.

[Skynard]

Ruth - I found your posting interesting. You said so many things that I also heard growing up. I wonder if it is a cultural thing, my mother is from Ecuador and we too, had health insurance. My mother also blames herself for my IC.

It is not as if I don't understand why we have meds and what purpose they serve, it is just getting past the mental barrier that is the problem.

Skyn

[curlycue]

skynard .............. yea I was born here van nyus california my parents are from chihuhua mexico. I think it is a cultural thing as well, its kind of sad to cuz other people have to suffer from it. I had a uro tell me in Tijuana once I was going through a really bad depression and he suggested a psytirist my mom was apauld what she said NO she is not crazy? the dr explained why he thought I needed help my mom then she tells him then I guess we all need help some time or other in our lives from psytrist. Thanks for sharing this with us.

[lttlewun]

CurlyCue ~

My dad is from Michoacan, Mexico and my mother was from Zacatecas.

I have heard you can get Elmiron in Tijuana. I wonder if it's cheaper? My friend suggested that I go see a doctor in T.J. and maybe can suggest other things we can do for IC. I guess it's worth a try. I know the doctors over there don't mess around. My parents used to take us over there as kids when we would get sick. They would give us a shot of Penicillin or whatever else we needed and we were feeling better by the time we crossed back over the boarder.

[jvr]

Hi Littlewun,

I see that your in southern California....there seem to be several good IC Specialists down south. Have you checked under the doctors listing on this site? Maybe you might have more luck that way than traveling to Mexico?

Jill

[lttlewun]

Hi Jill!

I actually have a Uro that is really nice and listens when I talk which is a great plus. He is the first Uro I was sent to. The only thing that kinda bothered me about him was that he does not perscribe Atarax or Elavil often. He said he only provides this to severe IC cases which is only about 10% of his clients. Hmmmm.

The looked on this site for a good Uro and it pulled up a Dr. Weinberg I believe right near me. Luckily, my referral was to a Dr. Gazaninga who works in the same office as Dr. Weinberg. It is safe for me to assume that since they work in the same office, they have the same beliefs/treatments for IC? I sure hope so!!

[jvr]

Hi Littlewun,

Honestly, my personal experience is that every urologist carries their own ideas even if in the same practice. I know another regular poster on here who saw one doctor who told her she did not have IC and then she saw another doctor in the practice who confirmed IC and began treatment for her. Something to think about-they might be the same, but there's also a good chance they may not. As far as the Atarax and Elavil issue-that is strange. Maybe your primary doctor would be willing to prescribe one of these to you? They seem like pretty straight forward and standard meds to prescribe. My primary doctor was willing to prescribe Elmiron for me if Dr. Parsons guided him on how to use it. Luckily I found a local urologist whom I think I'll be able to work with:) I'm an hour north of San Francisco and am heading down to San Diego to see Dr. Parsons in about 3 weeks. I'm hoping that Dr. Parsons will put together a plan of attack for my local urologist to consider and work with. There are always options to consider:)

Jill

[lttlewun]

Jvr~

My Uro is very familiar with Dr. Parsons. He gave me some info about his practice and says he likes to follow his procedures on how to treat IC patients since he is very knowledgeable. That made me feel better just knowing he knows who Dr. Parson's is! I am going to ask my PCP about adding either Atarax or Elavil. Ativan helps me a ton. Does anyone know of another drug similar to this that isn't a narcotic? I get paranoid that I am going to build up a tolerance for this drug. Thanks all!

[jvr]

Hi,

That's interesting because to the best of my knowledge, Dr. Parsons uses Atarax for his patients. I do believe he uses Elavil sometimes too. If you watch his Youtube lectures (Lecture 3) he mentions that most patients need Elmiron and Atarax together. Also his UCSD website mentions using these meds too. I don't get why he wouldn't want to try these? Maybe he's thinking your a mild case that only needs the Elmiron? I just don't know. He put my daughter who has mild IC on just the Elmiron initially thinking that that would do the trick so maybe there is more to Dr. Parsons protocol that I'm not aware of.:confused: I guess I'll find out really soon.

Jill

[lttlewun]

Jill ~

I read that about Dr. Parson's too! He uses Atarax, Elavil and Elmiron, but feels patients benefit more from the Atarax for some reason. He did tell me I had a pretty mild case so maybe that is why he is reluctant to put me on it? Please let me know what you find out! You can PM me if you want. How is your daughter responding to Elmiron? How long has she been on it and what are her symptoms? How long before she was diagnosed. It gives me comfort to know that Dr. Parson's realllly believes that Elmiron can help a large amount of patients if they just give it a shot and wait it out. I know waiting is the hardest part!

[curlycue]

lttlewun........ the last time I was in Tijuana was in 9-09 and my uro said I was still unable to buy Elmiron in Tijuana that Elmiron has a 20yr patent on it and wont or cant give the break down of the meds my uros name over there is Andres Hernandez Porras I have also seen Alexandro Moctezuma Ledesma they are great dr but he or both have adviced me to buy my meds here in the USA, I also see Dr. Lowell Parsons he is a great dr his staff is great I love them and see him every 6 months I stay down at the days inn hotel and make a day out of it, go down to Tijuana if I have to I see a dermatoligist there for acne there and my mom sees a Cardiologist. I love them. It would be great to get Elmiron at a cheaper rate I dont know what you pay I get it through prescription solutions 90 pills for 20.00 when I started taking it back in 2000 I would pay 120.00 a month its crazy, but what I pay for now is heparin sodium barb and lidocaine and all the stuff that comes with it that is 200.00 a month pls elmiron pls all kinds of meds for my other illnesses I have. thanks

[lttlewun]

Hi Ruth!

Thanks for telling me that we can't get Elmiron in Tijuana. What do the Uro's over there give their patients if they can't prescribe them Elmiron? What do they have to say about IC?

You're very luck to be able to see Dr. Parsons! Right now I pay $10 for my Elmiron and it lasts me about a month. I take it 3 pills a day, but the $10 a month only lasts for the first 4 months. Once that time is up, I will pay $25 which I still don't think is bad.

How long have you been on Elmiron? How long have you had IC?

[dking2]

My purse looks like a drug reps bag. My family knows and my immediate supervisor knows I do what I have to do to make it through a day. This is not what I want , but I also didn't ask for IC, DDD, Fibromyalgia, IBS etc. About 2 years ago I had a conversasion with my GP at the time (have since moved to another state) He said if I did not take the meds I might live longer (chronic pain in itself can kill you), or i could choose to take what I had to take to function. I Want to live every minute of my life the best I can.So I do what I have to, even with meds it is still a struggle, but I refuse to give up.

[suncaro23]

I know what you mean about the purse. Mine is getting heavier and heavier all the time with orange bottles and baggies of herbal meds. I'm hoping that soon this starts to help me feel better. Otherwise, I wouldn't be doing it.
I wish all of you the best, and hope your meds do what they need to do to help improve the quality of your lives.

[Skynard]

Thanks guys. I am getting to the "acceptance phase" of all the drug taking. I will do whatever I have to do, even if it is getting a larger purse for my traveling drug store!! I am grateful to be alive and I have to do what I have to do!

I appreciate all of you and all of your positive comments. We will all get through this one way or another. Hope you all have a great upcoming week!

Skyn

[curlycue]

lttlewun...........

I was diagnosed in 1996 I was 26yrs old at the time, I went to Tijuana out of desperation cuz I had been seen a couple of dr here at Kaiser and they were not doing or telling me anything and at the end of 4 months they said I had a diseasd bladder and want to take it out? crazy is what I said so My parents said well mabey you should go to Tijuna see what they tell you over there and the Uro over there finally was able to put a name of the illness Cystitis Interstitial CRAZY I said so we did DMSO treatments and all kind of other things I dont really remember but at the time it really helped. The only reason that I still have a realationship with the uro over there is cuz he was there at the time of my need you know helped me out when I was desperate and now one else would help me.

I have been on Elmiron since 1999 and doing heparin instills since 2003.