September is Interstitial cystitis awareness month

A word to encourage those suffering with IC that it can get better over time and may not always get worse.

I’ve had IC since about 1990 , I don’t expect to be cured of it. I want to manage it and not let it manage me.

I was lucky to be a nurse with access to the medical library and realized early what my diagnosis was, when I told a MD friend I thought I had IC he said “no you don’t want that.” He was right, I didn’t want that, but here we are years later and I still have IC. Many suffer for years before they get a diagnosis.

Initially it was pretty awful if you are reading this you know what I mean. So I won’t get into the many ways we suffer with this bladderbitch.
I have found that stress reduction and medication has made a difference in my symptoms, I can eat what I could not and even drink coffee if I am cautious . I know that if I wake up in the morning in pain, which happens less and less, I need to be careful and avoid my triggers. I drink ensure every morning instead of having coffee.

I’ve seen several urologist over these years, some good and one really terrible, who thought I was drug seeking and told me there is no such thing as bladder spasms and I didn’t have IC.

I never went back to see her.

The next urologist I saw insisted I had to have a cysto but agreed I couldn’t have it done in the office because the last one I’d had the MD punctured my bladder and it was horrible. So in the OR he found I had profound damage and ulcers in my bladder, he was convinced I had severe IC and gave me what I needed for pain started me on what for me is the miracle drug elavil (amitriptyline) 10 mg at bedtime, I currently take 100 mg and even more if in a flare, but it works for me and I don’t expect I’ll ever stop needing it, I’ve tried to decrease the dose when feeling good but always need to go back to 100 mg. So yes, I’m much better than I’ve ever been and I remain cautiously optimistic and hope that reading this might give hope to someone just starting on this rocky road that it can get better.

Elavil is an old drug, super cheap and has of course some side effects that include weight gain, dry mouth, & constipation and for some an increased heart rate all easily managed if you hang in there. If your uro hasn’t suggested this medication for you, you should ask about it. Cheap, effective is an antidepressant and helps with nerve pain and sleep. I think this outweighs the tolerable side effects.

I have a urine cytology test yearly because chronic inflammation anywhere can cause a change in cells (and no matter what you are told, it can initiate cancer growth). I have inflammatory cells in my urine even though I feel better, it’s still a damaged bladder.

Not everyone can take the steps I’ve taken to manage life, nor would they want to, I wonder if I’ve made the right choices. Then I remember last year I still lost several days in pain every month and since I’ve moved I’ve only had a few hours in pain and haven’t needed pain medications more than 4 or 5 times for comfort. It can be lonely but now I have Charley to take care of and that helps us both. This works for me right now.

I really hope that some one reads this message with hope and if I can help anyone understand interstitial cystitis you will only have to ask.

We need a cure.

Charley tells me, again & again

Charlie tells me when he has to go out to do his business but he’s taking advantage of my willingness to respond whenever he indicates, sometimes with great energy, that he needs to go out quick and urgently, but when we get outside and he just looks around. Two out of the 5 times during the night he did this, he would raise his leg to sprinkle a few bushes but mostly he just looked around, probably grinning to himself that he has it made in the shade with this new human. We finally went to sleep until 7 am and it was time to start all over again. By the way, my kipling, was neutered early and never knew he should lift his leg not squat like a female, I think the raised leg is icky and rude………what can I say, especially since this is done where ever when ever a bush is passed by. No bush is exempt.

He walks very well on the leash, I keep him tight by me but the leash expands, and he spotted another dog walker with her dog, way up ahead and he tried to tear off after them, Charley the runner was very fast until the extending leash stopped him in his tracks. Ouch!

He likes papaya, I wonder if it likes him, guess I’ll find out.

He only weighs 12 pounds of skin and bones..and long legs and thin skin, shivers in the morning air.

He’ll soon need a jacket.

I’ve been watching a set of videos that I have from Tim Gagnon, painting lessons with attention on clouds and landscapes. I’m a dedicated cloud freak, a danger on the roads because I am watching for clouds and not the road, the traffic here is so sparce it’s almost not dangerous. Clouds are what I want to learn to paint and will be spending plenty of time trying, it seems simple but if you don’t know how to paint them they look like white blobs, flat and boring blobs. Some of my paints have dried up, glad I can order on line, not much available at Walmart.

This morning was cool enough to paint in the studio but I had to reorganize my space for Charley, he wants to be beside me where ever I am, guess it’s a dog thing. I don’t mind, he sleeps a lot but wakes up if I move to watch what I’m doing, okay enough dog talk really, I promise to write of other thoughts, not only about Charlie but this is new and I am enjoying his company.

Ciao

Noises in the Night 2

Glad I didn’t ask my neighbor about the snoring sounds, it was my gray tank telling me to empty! I thought it was open to drain but since I’d moved the RV all the levers were closed and when I cleaned the shower I noticed the water wasn’t going down, I’m such a dummy! No more snoring sounds.

I’ve thought and thought about this dog,  tomorrow I’m going to get him, and all his stuff. Dogs have stuff you know, bowls and dog food for sure and toys not sure about a bed, better a blanket on the passenger seat so he can get up and down himself. Doubt he could jump up to my loungybed. It’s pretty high off the floor.

It was cool this morning and I as awake at 6am I did some cleanup in the studio before it got too warm and added more cardboard to the wall, I’m not sure that the barrier I used has helped as much as I’d hoped, it’s damn hot in there in the afternoon.

I have this plant we called papos I can’t remember it’s real name, grasshoppers love it and will destroy it I’m sure. Big grasshoppers I’ve caught two of them and I’m a little ashamed but I killed them both, in my hand. It was awful. But I knew they would come back and I like my plant so I did it. Then I noticed a dragonfly resting on the plant. Do dragonflies eat plants, I thought bugs . Anyway I put the plant in the studio and will keep it there just opening the door for morning sun. This plant had dozens of buds but never a flower they ate them before they could Bloom.

I’ve been so busy today that I forgot to put in my upper and didn’t think of it until I called the humane society about the dog. My voice sounds different without my teeth in, I sound like a little old toothless lady and I have to enunciate each word to be understood. I said I’ll call right back. Sometimes I forget I don’t have it in when I put something in my mouth and realize I can’t chew it. annoying

Hasta mañana

Noises in the Night?

Went to check out the dogs at the local shelter today with Becky,( I found out belatedly that she doesn’t like to be called Becca because she doesn’t like a woman she knows as Becca and I thought it was too cool so now she is Becky again) they only had one small dog, the poor pooch is so skinny, he looks like a mini greyhound, he was found wandering alone and some one took him..or her in to the shelter. I can’t remember the sex but I think I will get this small dog and fatten it up. I think he is small enough to be comfortable in my passenger seat for a bed. He, I think he’s a he, with long legs but small head, thin body he may be just what I need and may even be part greyhound which is what I wanted to get when I started out on this adventure. Life is funny that way.

Tomorrow I’ll go get dog food and stuff, not sure if he has been ‘fixed’ yet but they take care of that and for so much less than it would have cost me in Texas. It’s a small unit without resources to insist on home checks before adoption so it will not be a great expense for me, I think I’ll call him/her Charley, Yeah

Some weird sounds are happening outside of my RV. It sounds like a person snoring, I can’t figure it out and it first wondered if it was possible to hear my neighbor snoring all the way to my RV. !! But I heard it during the day too so I guess that is not the cause, unless he sleeps during the day which I don’t think he does as I see him sitting outside, maybe I’ll ask him if he hears these snoring noises, I hear it now……..weird.

GG my gas guzzling RV and I went to T or C for propane

A few days ago my propane ran out so we went to Tor C to fill the tank, but when I tried to light the pilot light on the water heater I couldn’t.

Neither could my helpful neighbors. We tried changing the thermocupler but it wasn’t the problem, time to get expert help.

helpful neighbors

Chip, who is said to know everything about RV’s was called. We decided to say good bye to propane and he made it all electric using a PL gas-to-electric conversion kit. I don’t see myself camping without electric services anywhere anymore so I think it a good plan. Now I want to sell the parts I’d bought for the new small tank that I no longer need, maybe on craigs list.

I’ve been thinking about getting a dog. I keep myself busy but a couple weeks ago I was feeling a little lonely and not getting out to walk. I have plenty of things I can do and a few things I should do but haven’t done. Maybe walking a dog would be good and I’d have something to take care of besides myself. The cons don’t outweigh the pros but I need to go check out the humane society to find out more availability and cost. Must be small and not noisy

It’s too hot!

The trip to Truth or Consequences was as usual messy. The door to my pantry flew open and stuff landed everywhere as I carefully turned a corner, the bathroom door opened but I had put stuff in the shower so not much mess, I need to put hooks on to keep these doors closed while traveling. Otherwise we’re traveling easier than before and going for propane was the only time I went anywhere in GG and now I don’t need to do even that now.

Life goes on as I anxiously await the fall and cooler days so I can get out to my studio which now is too hot except early am or late pm, both times which I’m asleep!

Did I Tell You GG sprung Another Roof Leak?

Yup, I felt drips fall on my head during a robust wind and rain session last week. Frank was informed and showed up 3 days later. Seems to be okay now but I was perplexed what to do about the wrinkles in my ceiling over the leak area, Frank said he thought as a smart hippy woman I would figure it out. I have but I’m not sure if I like it or if it looks silly. (why would he call me a hippy?) I covered the area of the ceiling affected with more of my Indian fabric and it matches the fabric on the loft so you get a full circle of the mandela, I don’t think a picture will make any sense but I’ll try to add one here. What do you say? Ceiling, loft, dust cover over clothes, too much? Today I love it, maybe not tomorrow. I think I’ll pull down the area that shows white between the loft and the ceiling tomorrow as it looks better on the right side of it. Fun.

I’ve been lazily reading this week and not doing much else but the books I read were educational so I think thinking is as good as doing. I read a wonderful book on Winston Churchill, An informal study on greatness by Robert Lewis Taylor. A really delightful read into this amazing politician full of his wit and charm and intelligence.

Finished that and started Grant by Ron Chernow. I highly recommend anything by Chernow if you enjoy biographies, but Grant was an eye opener, truly one of the great men of his time unappreciated in ours while on a par with Lincoln in deeds. (yeah, I cried in the end)

Now I’ve started Washington, the Indispensable Man by James Thomas Flexner. So far he has not been shown in a very bright light during the war but I expect he will shine shortly. Did you know he was a flirt with the ladies? Just getting started here…………

Good night, the sunset was beautiful

What Would You Do?

I’d take away their guns

but that’s not possible so here’s what I would do

a government DO NOT SELL LIST updated daily and monitored , required of all gun sellers to sign into when making a sale with sales information and cross checked with POLICE RECORDS

Permits and proof of purchase of a locked box

Profile exam taken before sale, reason for purchase and intent

Wait time at least 2 weeks

buy back program

inspectors to monitor sales

tax handguns 400% or more

BAN ASSAULT AND MILITARY WEAPONS

BAN GUN LOBBISTS

allow hunting guns

allow shot guns

allow smart guns

WHAT WOULD YOU DO?

GET SERIOUS ABOUT GUN CONTROL

Update

I left out the most important thing!

Teach in schools, from the earliest years to graduation,

Citizenship and Civics lessons to inform our children of the responsibilities and the advantages of living and growing in this country, teaching universal values of honestly and decency. so as they grow they are informed correctly

I believe we can all agree that one answer to our gun problem in the long term means we need to solve the problems of ill informed young people, and some not so young, who feel disenfranchised and left behind to organize and fight back against their perceived condition to demand their rights and freedom via violence .

Thinking my Thoughts

I’d like people to read my blog because they are interested in learning how this old woman finds her world today, not because they are friends or family but i add my posts on my FB site because I like to see my stats and without FB I would not have many readers, it’s a vanity thing I guess.I will probably need to work harder to keep readers interested if I don’t count on face book to bring readers here. But my goal is to write not to amuse or otherwise entertain…..but it’s fun to see stats on readership, especially readers from different countries that read my words, I’m honored.

I lay here at 5am thinking about painting my kitchen shelf and other more interesting thoughts and ideas on my mind, lost before I could write them down, thoughtful and provoking thoughts if I could remember true,

Bird sounds are distracting me, is it one bird making all that chirping or is it a conversation among early birds? And now they are gone, I guess it was just one giving instructions on their agenda for the day and flew away and now it’s quiet and getting light, the moon has a orange ring around it and the bird is back with follow up chirping,and I hear more birds answering, distracting but in a good nature’s blessings kind of way.

I have a small collection of books that I read when I need to feel inspired . They are Penguin books, in the Great Ideas series.

It is written that throughout history there are books that have changed the world they are books that have enriched lives, inspired debate, dissent, war. They are little 4 x 6 inch books paperback bound in white, they are a pleasure to hold in my hand and I can leave notes and underline thoughts that surprise or enrich my reading. I have 11 of them which makes me think I’ve lost one of them, yes I’m missing Thomas Kemp’s Inner Life. I’ve been carrying these small books around with me for many years and they still look like new because I’ve known that I will someday read them all, someday when I have time to really read and take that knowledge into my life, and finally that time has arrived. Recently I’ve been reading Seneca on the Shortness of Life and as a coincidence I found this article on brain pickings website (which you may like as much as I do) http://brainpickings.org

Here is a quote from Seneca on the shortness of Life.

It is not that we have a short time to live, but that we waste a lot of it. Life is long enough, and a sufficiently generous amount has been given to us for the highest achievements if it were all well invested. But when it is wasted in heedless luxury and spent on no good activity, we are forced at last by death’s final constraint to realize that it has passed away before we knew it was passing. So it is: we are not given a short life but we make it short, and we are not ill-supplied but wasteful of it… Life is long if you know how to use it.

Seneca on Busyness and the Art of Living Wide Rather Than Living Long on Brain Pickingshttps://www.brainpickings.org/2014/09/01/seneca-on-the-shortness-of-life/?mc_cid=19af039bb6&mc_eid=cc9aea78a2