IC UPDATE, no good news here

As though having IC is not bad enough now I’ve read that taking some medications long term is being reported as causing an increase in mental clouding….sometimes called dementia.

I’ve taken elavil for about 30 years and I feel sluggish all the time and concerned about my mind.! I’ll start tapering it down while I start something recommended called PEAORA POLY 500 dietary supplement. (sold on the IC website.) This has been used in Europe for years for pain management. I’ve started with one tablet daily to start and will taper back on the Elavil, which is kind of scary, but I’m hopeful.

I’ve added this information from the IC optimist website.

For interstitial cystitis and overactive bladder patients struggling with intense urinary frequency and urgency, physicians often prescribe anticholinergic medications such as Amitryptiline (Elavil), imipramine (Tofranil) or Nortryptiline (Pamelor), Oxybutynin (Ditropan, Oytrol) or Tolteradine (Detrol). Unfortunately, their use has now been linked to cognitive decline and dementia in some patients who use it daily for long periods of time.

New research from the United Kingdom studied the medical records of 58,769 people with dementia and 225,574 without dementia, all 55 years or older. They found that long-term, daily use (3 years or longer) of certain anticholinergic medications were associated with a 50% higher risk of dementia, including: bladder medications for overactive bladder, antidepressants, antipsychotic, anti-Parkinson’s and epilepsy drugs. The study found no significant risks for two other types of medications also used by IC patients (anthistamines and skeletal muscle relaxants)  although the number of patients using them were small. The authors strongly suggested that anticholinergic drugs should be prescribed with caution in middle-aged and older people.

We asked Dr. Robert Evans for his thoughts on this issue. “We have always known that elderly patients can develop mental status changes, confusion and even dementia if exposed to anticholinergics which is why so many of us prefer to use Mirabegron for pts with overactive bladder” he said. “I rarely use anticholinergics in patients with IC as I do not think they help decrease frequency.  The reason is that IC patients void frequently because of pain not because of overactivity. These meds will not decrease voiding frequency since they do not help with pain.  I especially want to avoid them on patients who are on other drugs with anticholinergic activity such as antihistamines, tricyclics or gabapentin.” 

Thankfully self-help strategies can also help! Many IC patients have learned that their frequency and urgency is often triggered by certain foods and beverages.  If you are struggling with symptoms and still drinking coffees, sodas, green teas, black teas, there is hope. You could feel much better in a relatively quick period of time by modifying your diet and eliminating these risk foods. It’s certainly worth trying, right?

You can find a more extensive discussion of this topic in the Spring/Summer 2019 IC Optimist, the ICN Member magazine. Learn more here! 

References:

1. Coupland C, et al. Anticholinergic Drug Exposure and the Risk of Dementia. JAMA Intern Med. Published online June 24, 2019. Accessed June 30, 2019 – https://jamanetwork.com/journals/jamai nternalmedicine/fullarticle/2736353

This new study is going to challenge the already challenging treatment of IC, now we can’t take the medications that allowed us to improve our quality of life with IC.

50% is a impressive number!

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Flan de la Casa

Have you ever laughed uncontrollably about something no one else thought was funny?

I didn’t want to forget to write this post idea so I made a voice memo to myself. I tried to add it here but haven’t been able, just as well because I am laughing so hard it I couldn’t speak and all that is heard is my hysterics you would have laughed too I’m sure! uncontrollable laughter about what?

As I was almost falling to sleep I got this image of my family. My son who was 8 or 10 in this dream-like state, he says I want hot dog buns. This never happened in real life and again I’m laughing. Hysterically all by myself.

then there is the time………with the family in the car going out for dinner and my daughter says she wants flan de la casa we all started laughing, but no one knows why it was so funny Even today I can still grin about it, I guess it was just the moment, even now it makes me giggle.

Then there is the time…… in Austin I was driving my sister and her daughter about to show them a bit of Austin and I couldn’t get out of the parking lot. Yeah big time hysterical laughter.silly ladies.

Yeah, none of those examples are really much to laugh about but all caused hysterics.

Hysterical laughing is almost frightening, there’s the sense of being out of control, tears rolling down your cheeks and then you probably look pretty silly. But you are laughing and that is good for your soul

(this needed some editing and made me laugh all over again)

Stuck on Pause?

Charley being Charley

About being stuck. I’m not really stuck. I just have periods of great activity that alternate with doing nothing.

I read a lot, I alternate my reading with something of value to my brain with thriller books in between. 2 thrillers to 1 bio or history . I’m reading The Kingdom of God is within you, by Tolstoy perhaps an odd choice for one with little or no interest in religion but I like to know stuff, to know why I have little or no interest.

I ‘m having trouble getting into Don Quijote in original Spanish. Really a tough read for me, but I’ll come back to it. This is what I do because I don’t have television. Really happy I can get plenty of library books on my ipad. If I didn’t I’d probably be more productive….but less informed.

I have (had) a nice 24 x 24 canvas that I didn’t like how it turned out so I sanded it down and put a coat of white house paint on it, lacking gesso. I’ve been curious to use a new set of inks and thought to give them a try on canvas though I doubt that is the usual use for them. I liked how they looked with just abstract forms and beautiful transparency but I wasn’t happy with the center of the painting and tried to cover it again with more white paint, then I spilled the blue paint…….and then I spilled the black. then trying to get it all together I messed up the whole canvas. What a waste! Maybe I can do a do over again. tomorrow.

We have seen some beautiful huge RV’s here lately but most just stay a short time, the snowbirds haven’t arrived yet, early for them still. CJ (owner) has regulars that come every winter. I’ve been here nearly a year, time flies.

It was chilly this morning Charley wore a sweater, so did I.

Miscellaneous Thoughts

Is Charley part horse?

Every time I say how well I’m managing my IC, I get smacked down. Or maybe I think I’m doing so well that I stop taking precautions. it is what it is.

My garden looks great! It has been raining and the winds have let up a bit, I’m thinking about making a raised bed garden behind my studio for mini veggies.

But I also want to upgrade my tiny bathroom with a tiny tub and replace the wall enclosure and that will cost a bit more than I can spend….oh yeah a new tiny sink too. And a new kitchen sink that I should have gotten when I changed the faucet.

Wants or Needs?

I have everything I need right here

human nature is to want more or better, i’m human.

I can’t remember if I told you that we went to Walmart, Charley wore his new emotional support animal ID thing and was super good walking around with me looking for the items I needed to unplug my stopped up shower drain, we didn’t do grocery shopping . A woman asked me what a emotional support dog does and all I could think of to say was that I’m old and live alone, he keeps me company.

I’m going to edit that remark and take a friends advise to simply say he gives me emotional support y mas nada! No more details.

Do you spend much time on the news? I do, too much time wasted it’s such a mess, we seem to have forgotten who we are, or maybe we are not who we thought we were.

Another Beautiful Sunset

Pink sky at night sailors delight.

This blog has gone from an interesting ( hmm) RV travel blog and experiences of an old lady, to a stay at home old lady with a dog.

But that is what is cool about life, you never know what to expect when you let things happen instead of having a plan. I haven’t done any long term planning and just live by the seat of my pants accepting what comes next without much thought.

I don’t recommend this life style unless you have plenty of money. And health insurance.

I am just now, after living 76 .5 years, finding out about myself and what is important to me. Also my deficiencies. I am a social isolationist, I must be, I like my own company enough to not miss the company of others.

Usually.

It’s hard to see my grandkids grow up without me around but I don’t think they will forget that I was with them from birth for 12 years, hands- on- grandma. that was my role then. Now it’s different, I’m grandma- at- a -distance, still loving them everyday.

But I can bore myself.

To counter that I start a project and then I’m a happy loner with Charley for company, so I am not really alone. By the way, I received the ’emotional service animal’ collar,leash and jacket thing to ID him as my support dog. He looks very cute in it I’ll get a photo tomorrow. We haven’t used them yet but I’m running out of food and will have to go to Walmart soon and he can go shopping with me. I wonder how that will turn out, he is well behaved so far though he ‘s disappeared twice when off the leash and I had to search for him calling Charley- charley, soon I had 4 neighbors coming out of their RV and helping me look for him calling Charley. I have to be more careful, less trusting and keep him on a leash, we have a dog run so he can be off the leash while in there.

And now the temperature is dropping and I’ll be able to paint in my studio, I am a fortunate woman.

Mother Nature God-smacked Me

I stepped out of my RV at about 7:30 to take Charley for a walk and it felt like I’d stepped into a another world that was tinged a most beautiful pink. Just before the sun went down the sky was pink and it seemed to reflect everything around me pink. We walked a bit checking on the sky that seemed to change in so many color and shape combinations one could not doubt the existence of a higher power nor marvel at the beauty we are so fortunate to observe.

Thank you.