I am a 72 yrs old, Married to my wonderful husband Don. I have 3 children and 5 Grand Children.
I have been living with Intersistial Cystitis for 14+ yrs and doing my best at the moment to raise more awareness in Canada and hopefully leave a footprint to helping others.
I hope everyone is staying safe during this pandemic and practicing safe distancing. My heart felt thanks goes out to all those who are working during this time, shop workers, cleaning staff, doctors and nurses, paramedic`s , truck drivers, garbage collectors and many more that are keeping us going during this difficult time.
To my I.C. friends I hope you are all doing ok and able to get doctors appointments when needed. I know here in my town they don`t want you going to the hospital unless its an emergency and so far my doctors office is closed. I can at least email my nurse practitioner and ask for advice/help.
What is everyone doing to keep busy? I have been doing my knitting and teaching myself to crochet, I went and bought another Loom kit yesterday that you can link together into a shape you want so going to try making different things with it. I try and take a daily walk weather permitting I am getting so stiff not exercising think I will have to start doing the walking program on U-Tube that I used to do it was pretty good. Also been doing a little baking. Had a good laugh when I made oatmeal raisin cookies and forgot to put in the oatmeal..LOL
One strange thing I have to add is that I got really sick with the flu it was the worst in a long time but somehow or other my I.C. symptoms got better, strange but true.
My Thoughts and Prayers go out to all those suffering with the virus and my heart felt thanks go out to all front line workers at this time. Having said that I implore those that are stockpiling and taking advantage of people please stop. If we all just buy like normal then I’m sure that there will be lots for everyone and PLEASE do not take advantage of people who are already struggling and trying to make ends meet.
I know firsthand that so many of us suffering with I.C. are very generous and caring people we try to reach out and support each other so I think it would be wonderful if everyone did this by reaching out to friends, neighbours and those in need of help whether it’s a ride to the grocery store or where ever and/or picking up groceries or medications. Let’s all show some humanity and caring to each other not to mention being a good example to the younger generation. So my friends stay safe and in good health and please God this will pass quickly and life can return to normal.
Well just going through a terrible bout of the flu but, thank goodness it has not triggered a flare up with my IC so feeling lucky there.
I don’t know if I have mentioned this before or not but, I have suffered with terrible irritation and not been able to get rid of it even the doctors have done nothing to help. I do use Premarin for dryness and still have problems. Well during one of my searches at the drug store I came across Vagisil ph balance and you wash with it twice a day; I think it is actually helping so keeping me fingers crossed.
I have been trying to get Queen’s University to set up a website for IC where donations can be made for research and people can get a tax receipt since last year without any luck so far they keep telling me that they have to talk to the IC specialist here and decided how the money will be distributed. So far I am getting nowhere; I would love to organize a couple of walks for IC this year but it will be hard to do if I can’t offer tax receipts. I think I have said before Queen’s is the only university in Canada that does IC research and patient care. So I will keep on trying. Hope you all have a good day; Pauline
Last night I had a minor miracle in that I thought I had slept right through till 7am but my husband said that I was up at 2am think I must have sleepwalked because don’t remember doing it , anyway still way better than the usual every 2 hours🙂 after suffering with intermittent low back pain for a number of years found out today that I have arthritis in my SI joints
If anyone is interested IC Support Canada is offering deals on supplements for I.C.
First this hasn’t been a great time for me since Christmas with another UTI to deal with and the most terrible irritation but, doing my best to deal with it all. I am now back on the Demannose in hopes that will help.
Now to the exciting news from Jill Osborne of the IC Network first was the new book she is saying is an absolute must to read for physicians and patients alike, the book is “Breaking Through Chronic Pelvic Pain a Holistic approach for relief” written by Jerome M. Weiss M.D. It is available on Amazon and also the I.C. Network is now selling it for a cheaper price.
There are now a couple of new supplements out that are supposed to be very good. Bladder Rest
Peaora – this is suppose to be having very good results.
And coming out this month for those always fighting infections “PrVnt” a new formula the same company as above supplements have come out with. Would love to hear from you all out there if you have tried any of these and if so what results did you have?
After seeing my IC specialist and him giving me Mirabegron for nocturia it caused me more problems just didn’t work for me at all if anything it made it worse in that it stopped me from actually going but the pain and pressure was still there made me really miserable. I was put on 50mg and even when I took half that and it didn’t help.
My family doctor is now referring me to a Pelvic Floor Therapist so waiting to get my appointment for that and hoping that it will give me some relief. I am also suffering terribly with irritation below and just don’t know what to do about it so if there is anyone reading this that might have a suggestion then please share. As always my
thoughts and prayers go out to those suffering with this disease.
Just seen this on instagram and thought it worth sharing; icsupportcanada Pumpkin seed oil has been shown to be useful for the treatment of nocturia in patients with urinary disorders. An extract of pumpkin seed oil from C. maxima (10 g of oil/day) was orally administrated for 12 wks. After 6 and 12 wks, urinary function was evaluated using the Overactive Bladder Symptom Score (OABSS). Pumpkin seed oil from C. maxima significantly reduced the degree of OABSS in the subjects. Definitely worth a try for those suffering with frequency and nocturia. I promote supplements that I feel are most beneficial from my research and experience for bladder health. To access these, see the link in my bio. You can get 10% off of all of these supplements by using code ICSC-10 at checkout.
I just wanted to share some books that have really helped me on my journey with I.C. I have already mentioned Along the Healing Path (recovering from Interstitial Cystitis) by Cathrine M. Simone; Another is Solving the Interstitial Cystitis Puzzle ( A Guide to Natural Healing) Amrit K. Willis, RN, BSN, BA and others. I think one of the most up to date ones I have read is The Interstitial Cystitis Solution by Nicole Cozean, P.T., D.P.T., W.C.S., and Jesse Cozean the cover quite a lot even pelvic floor therapy.
I last left off telling about the tea’s I have used there is one I forgot to mention it’s a Presidents Choice Tea calledSoothing Tea it has peppermint, Ginger and Fennel that I really like as an everyday tea and like it says it is soothing.
During flares I like to use Lavender oil which I rub into the pubic area to relief symptoms I don’t know how it works but it does; I also use 1/4 tsp. bicarbonate of soda in a glass of water or Alka Seltzer. I guess the biggest natural product I have used is Cytsa-Q along with products like Glucosamine Chondritin, D-Mannose, L-Glutamine, Prelief and Aloe Vera. I am very sensitive to Medications and have had some bad side effects like with Elmiron my whole mouth ulcerated beside other side effects like hair loss which have never fully come back. Two years ago my family doctor put me on Nabilone ( a chemical Marijuana product), for a long while I thought I had hit the jackpot and finally got something that let me lead an almost normal life and I could get some decent sleep. Then fall of 2018 I started to get worried my memory was getting worse and worse and my husband was really afraid for me, there was also some other side effects like occasional fast heart beat, weakness, depression, dry mouth, and trouble concentrating. I was on a very low dose 25 mg and didn’t think it would harm to stop taking it because of the symptoms and not being able to get to my doctor right away. Well it put me into a terrible withdrawal, didn’t sleep for a week, my whole insides was shaking until I finally went to the hospital where they had to put me on medication to bring me down from the withdrawals.
The upshot of all this was it put me back almost to square one as regards my I.C. and I am still struggling to get it back to where I once was. I quit almost everything except my teas and Lavender Oil and I am now slowly adding back things one at a time and trying the CBD oil in hopes of helping with my Nocturia.
I have another specialist appointment early December so will see what they will have to say then. I’ll keep you informed. I’d like to say if you have any advice of things you have tried and worked please let me and others who may read this blog know.