Canadian Chat

[Quinn24]

Another reason why some people may not use this chat is that when they post, a lot of the time they get no replies or reponses. I have posted a few times on the regular posts and never get my questions replied to. (I had a different screen name). Once I asked about the Frozen Aloe Vera and got maybe two replies and others I see who post on the same subject will get 50 replies. I like the boards but they seem really clicky, it seems the same people chat back and forth with each other. I posted some questions on the Candian chat forum a few days ago and no one has responded. It's like saying "Hi" to someone for 2 months and they don't reply, eventually you just give up and don't bother trying to communicate any longer. Just my humble opinion about why some people may loose interest in the regular or Canadian chat rooms?? But what do I know. Please don't anyone give me a lashing for saying this, I don't mean any disrespect to anyone, it's just my own observation and experience.

[DebbieB]

Hello Quinn24;

Another reason why some people may not use this chat is that when they post, a lot of the time they get no replies or reponses.

I have try to reply to many on this message board, it is just hard when I do not know any thing about what you may be posting and the question that you asked " Once I asked about the Frozen Aloe Vera "

As for having this Canada chat message board it is good for newcomer that come on the board and I don't know if you were aware that we did not have our own "Canada IC message board for over two and half years and it was the same only a few people posted on it and we did not have a lot of support either on the message board and that is why it is no longer up and running at this time..
I was the administrator for this board and that is why Jill asked me to look about this Canada Chat board ..

I am in contact with many Canadian with IC and find that there is not much support for IC and that is why Jill try to help us with our own Canada IC message board but I find that no one wanted to take the interest in supporting the board by funding it to keep it going so Jill had no other choice of closing it ..

I am only one person that is trying to be here for support and giving the best that I can to answer to some of the questions but if I do not know much about it ..I do give them the web site for the patient hand book on the IC-network to read and that is where you will get lots of great information from ..


Debbie

[Quinn24]

Hi Debbie,
The Quote you put on your reply actually isn't specific to Canada Chat......My Aloe Vera Question was asked on the regular chat forum. No one answers in Canada because there are not enough people that regularly check with the Canadian Forum so everyone tends to use the regular one. The question I had on the Canadian Forum was in response to someone saying there was an IC support group at RCH and I was asking if I could get some information on that but that person never replied.

[DebbieB]

Hi Quinn:

No one answers in Canada because there are not enough people that regularly check with the Canadian Forum so everyone tends to use the regular one.

I am sorry but I am totally confused on what Canadian Forum you are taking about???

[Quinn24]

Hi Debbie,
Sorry I don't use the proper terminology as I have no idea what these chat line, forums are called. Wherever I am typing to now is what I called the Canadian Forum.......the Canada Chat portion of the ICN Network. Sorry for confusing you. I never know what these things are called. Anyways, it doesn't matter so don't worry about it, it's not an important subject.

[foofie]

Hi Quin 24. I sent a note to Maria, who is the coordinator for the Canada site. I told her that I only found this Canadian site today after being on the US site for quite a while. This site is hard to find. It should pop up by just typing in IC Canada, but that sends you to the US first and then you have to find the Canadian link. I'm quite computer literate and still found it difficult to get here. Please feel free to chat with me here. I'll try to answer you...that is if I can find my way back here again!! Good Luck and don't give up. Foofie

[foofie]

You sound discouraged and like you don't think you really matter to anyone. Well you do matter. I care. Foofie

[foofie]

I was so thrilled to find this Canadian IC site. I did find it hard to find though. When I typed in IC Canada, I ended up in the US site and then had to find my way to this Canadian site. Should be a more direct route, I think. Okay, this is my story. I was finally diagnosed with IC during a bladder lift surgery ( my 2nd one) at Vancouver General Hospital in April 07. I'm sure I've had IC for years and have not been diagnosed til now. Dr. Wilke, who is an eminent uro/gyn doctor there just told my family doctor that I should 'perhaps by on Elmiron" My family doctor retired soon after that, so I was left in a bit of a predicament, and a lot of pain. As we all know, here in Canada especially in BC, finding a family doctor is next to impossible. I have now finally found one, thank God. He has me on Elavil (for chronic pain...small doses 20 mg. in am and again in pm) Valium (1/2 tab in am and 1 tab in pm...Valium is not only helpful for stress , but also helps to control spasms) Elmiron (this is not helping much at all, but maybe I need to be on it longer) and Ty.3 for bad pain flare ups. I see a fully qualified naturopathic doctor who has me on a supplement called IC Blend by Vitanica. This has really, really worked. I ran out of it for a week and ended up flat in bed with ice packs again. Back on it and I was better in just days. She also suggested super greens supplements to keep my urine ph balanced. This works! I tested both my saliva and urine with ph strips. No question. It works and super greens are good for you. She also has me on an adrenal gland supplement...this may only pertain to me. I was very run down because of all the pain etc. Something that has really helped me is that I see a fully registered massage therapist weekly. She works on my pain trigger points and the pain relief is like overnight! I am getting better slowly, but surely. I strongly suggest that we all need to find what works for us. Anything invasive, such as infusions etc, just make me worse. Strong drugs don't really help and I was on morphine, but stopped because it is so addictive. Many doctors prescribe pyridium, but although this may help short term for pain, it is pure acid ( I know, I tested it) and could harm your bladder wall even more long term. I've tried so much, that I likely forgot something here, but am more that willing to help whoever however I can! Stay strong...and fight back. Don't let IC win! With a caring heart ( and a very faulty bladder) Foofie

[barb 1]

Hi there,

I have been using the States board and got responses but have never received anything back fro the Canadian site.

Hope to hear and see more people posting.

Barb 1

[barb 1]

Hi Foofie,

Good to read your message.

Hope we can see more posts from Canada.

I got a lot of help from the site in the States and even got info. that I could not get here.

Hope to hear from you all soon.

Barb 1

[barb 1]

Hi Debbie, Foofie, Quin and anyone else on the Canadian site.

I usually just type in Canadian Forum on the search bar of the American site and it goes thru very quickly to the Canadian site.

I have not written here for a while as I have been having some "new" adventures with healthcare!

The Aids to Daily living people came out to assess me for bathroom aids and what a nightmare this was.

They brought out a bath tub rail to help me get in and out of the bath, it would not fit my tub with the drainholes going into the tub so the guy screwed it onto my bath tub ackwards with the drainholes onto the floor and he said "there you go, now it fits"!

We wanted him to take it off and take it away but he "galloped off" to his van with the box before we could even unsrew the thing!

The apartment I have has stone tiles on the floor and any water on them is asking for trouble. My bathroom is so small that I would either end up in the toilet bowl or the cat litter box!

Before trying to fit the bath rail he put a bath seat in the tub and said "try this"! I am only about four feet ten and a half inches tall and to reah this seat I would need legs at least 3" longer. I managed to sit on the very edge and the foam rubber seat cover shot up and hit me on the bum followed by the seat!

He had also tried to fit a round raised toilet seat into my elongated toilet that rocked like a playground toy when you touched it!

Needless to say I did not try sitting on this!

I telephoned homecare and told them that I did not have time to deal with this and they would have to wait until after I came back from seeing Dr. Hassouna.

I flew down on Friday, we watched the news of the Quantas plane with its side torn out on the aircraft news channel, not a good idea.

Then on Saturday I had to get my daughter to rush me to the dollar store where I stocked up on "cheap" pads as I don't use this kind of thing anymore and neither does she.

I have my device for retention but on Friday it seemed to be working o.k. and then on Saturday I (it takes my delinquent knees a long time to get me off the bed) had this horrible urge to pee, thankfully made it to standing (thank goodness for wooden floors) and my bladder just let go and I peeded all over the floor!

My daughter said: "oh Mom, It is enough with the babies (one kid is 17, the others are two and a half and one)!, what happened!

I don't know what has happened and feel that my Wednesday appointment cannot come fast enough. Just hope I don't pee on Dr. Hassouna's floor! That will make it easier to explain!

It does not matter what kind of pads I get, got some cheap ones for incontinence from Walmart but there is no worse feeling than knowing that your legs won't get you to the bathroom and crossing the legs is going to land you on the floor, so I just have to stand there with the same expression as my grandson and pee in my pants!

On Saturday I felt an urge but did not want to go, then the floodgates opened without feeling and that was it!

I have absolutely no feeling that I need to go, just feel the trickle when it starts! There is no fullness or real sensation, but the embarrasment is something else!

Who knows what it is with me !

I turned the device off for the day and then back on but that made no difference either. I know I have an infection, burning when I pee again but have just finnished two lots of antibiotics including cipro. Maybe I need to try them for a three month stretch again.

I will promise that every time I go on the States site I will send a note to our Canadian site. We need to make each oher laugh, even when it it really isn't funny, laughter is the best healer.

I did get so much imformation and help and thru them I found the Canadian site.

Like having visions of throwing the bath support at the guy fleeing with the empty box from my apartment!

The joys of being poor (off work on short term disability now 34 weeks) which qualifies me for Aids to Daily Living in Alberta) but if this means having equipment that is absolutely no good for the purpose they are bing issues for then I would rather go without.

My neighbour and I got a bath stool that works for $2 and a grab bar for $3 (after this guy had gone) at the Salvation Army thrift shop so maybe I can keep searching and find more stuff.

Like you, Debbie, I will have to count my pennies!

When all else fails, laugh, watch a funny movie and really laugh at ourselves.

Normal people just don't understand how I can laugh at some of the things that have and are happening, they think it is terrible and that I should be very angry. They have no idea what we are going thru and we do not wish it on them.

Laughter makes me feel good and it really upsets the "enemy" if you laugh and smile!

Keeping our faith strong and praying a lot really helps. Being thankful and keeping a running record in our minds of all the reasons we have to be thankful for and that things could be a whole lot worse.

Debbie, I do hope you are feeling so much better. Let me know how it goes with you.

Hope you are all doing well and I promise to write the Canandian forum every week.

At the moment I need all the help I can get, so many wonderful people will help when you have a walker and a cane, suitcase and carry-on at the airports!

I am more trouble with the cane than without it, but they tell me that practice makes perfect! I try to remind myself of this when I am trying to come down my daughters twisty staircase with it!

Or better yet the one year old thinks it is a great toy!

Just when I think cross your legs and wait out the moment I just laugh so hard (that empties the bladders faster) I then proceed to fall over the cane!

There is no helping some people!

Talk to you guys again soon.

Barb 1

[Mothergoose]

Sorry to hear you are having so much trouble. Maybe try depends for awhile.

[barb 1]

Hi Mothergoose,

Thank you so much for the suggestion. Have you ever had this problem or know any one that did?

It is so embarrasing but I have to laugh.



Thank you so much.

Barb 1

[Mothergoose]

No sorry i don't know anybody with these sorts of problems, but you need some help. It does baffle me as to what is happening to you.

Is the thing you turn on and off an insterm (sp), and did you say that it was for retention? And where did you get it. I have IC, IBS, PFD, neurogenic bladder, and severe retention. I am waiting to see a new uro about the retention end of Aug.

People don't understand what we go through. Did you post your problems where more people will see it and maybe have some suggestions, like maybe in the in the section severe IC

Let me know how you do or what you find out.

[barb 1]

Hi Mothergoose, every one,

The visit today went quite well. Dr. H. told me that the problems with the legs can happen and to see a nuerologist.

The swollen bladder and eurethra{?} he told me to see my gyne. for! Not sure about that!

I told him about all of this "surge" and he thinks it is because of the bladder infection. I told him that I had just finnished two sets of antibiotics and they had not worked. He gave me a new persription and said he would wait for the tests to come back.

I have to go back to his office next week befor I fly back as the surgery report is not my information and I would like to get this corrected before I take it home. In the meantime I will fax it to the Minister's assistant tomorrow to see just why medical disasters happen.

It was not Dr. H. that wrote it but yo would think someone would proof read them befor they get into the system.

Then I gave him the wrog form for Revenue Canada for the dissability tax credit so I have to go back and get another one completed! I thought I was being so careful!

It is the Medtronic interstim and it worked so well until the diathermy.

I just don't understand why I am having this non stop bladder infection.

I noticed Dr. H. had IC imformation on his desk. He is a wonderful doctor so you might want to talk to him.

I will write more tomorrow as my daughter wants to go to bed and I am on her computer.

Thank you so much for all of your support and I will write again tomorrow.

Barb 1