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.

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

Silver City, Gila National Park & Emory Pass, Rock City

Becca and I went to Silver city, we had to see what this artists conclave was all about. Said to be the most diverse art collective in New Mexico,( what about Santa Fe? ) Studios, galleries and museums number over 50 in some out of town areas, but down town is replete with shops and galleries, we saw but a few then had lunch in a pub for a local brew. We plan to come back to see more, they offer workshops, weaving would be fun to learn! But it is a bit far from home.

We wanted to stop in Rock City before going home, glad we did, what a incredible site of huge volcanic rock . You can camp in this area but we only saw a couple people, there is a nice visitors information building with bathrooms and an informational video.

Then I took a wrong turn.

We ended up in Gila National forest NM 152 which lead to Emory pass. A road of continuous twists and hairpin curves and no guardrails. What a great ride! So glad I was driving my smart car, anything bigger would have been scary. Too bad these photos don’t show how deep was the valley, the peak is 8149 elevation, I read that it is a favorite ride for motorcyclists but even they follow the suggested 10-15 mile speed recommended and enjoy the scenery. I’m glad I filled my tank before heading out, that would have been a big mistake as the ride is long, I was beginning to wonder when it would end, and then it did.

Kathy’s attempt to save her garden from the heat

This foil stuff is super strong and gives shade where there was none, gusts of wind only rocked the tables I have it held onto. That is the weakness, not having anything better to attach it to.

This is the foil stuff I’m using to insulate the studio, plus cardboard.That project awaits a ladder I ordered should get here soon, thank you amazon, with my smart car there aren’t many things I can easily fit in so amazon prime has been delivering my supplies.

A neighbor saw my cover and mentioned an awning he had and until then I had not thought of an awning, that would do the job and look a lot better. I’ll look into it.

I sewed four pieces of this fabric like foil together, I should have gotten a photo of me with my sewing machine outside sewing these large sections together and stapling them to the studio wall, what a job but kinda fun. Satisfying work.

So I may get a awning when this gets blown away. This will not tear, the only thing that could happen is if the tables I have it attached to, despite being weighed down with rocks and a full watering container holding it down gets upturned by the wind. I guess if it rained really hard it could get heavy with water and pull down the tables. Today is the first time I only needed to water my plants once, not two or three times to save them from drying up from the sun.

it’s very hot, Seems it is for almost everyone everywhere. Worrisome for the future, what a world  we are leaving for posterity.

These photos are not great but gives you an idea. I’ve been lazy about writing here don’t know why, probably not having much to say.

My words are being Found Easier

I think writing has been an asset for me but spelling hasn’t improved much. Seems like if I type fast enough the words will come without much thought……. it’s when I slow down that I have problems. When I have to think………

It’s hot about 100 degrees this week, I have to keep a close eye on my plants, they are suffering the heat and the wind but I may see flowers and cucumbers soon if I carefully tend them.

Work on the studio progresses slowly, I was even out there painting yesterday and the AC works hard but tomorrow I’ll get the material I need to insulate and it should be comfortable. My new fabric is at the post office to be picked up too so I’ll have some busy days ahead, Happy for that.

I found something I had written 6 years ago and wonder who I was then and am happy that is not who I am today. I’ll share it.

My mind feels light, sluggishly languishing here empty

Get old become an inconvenience

My thoughts have no weight to hold them in

they are forgotten before they are recognized

lost in the void that is my mind with no exit

to embrace only half a thought is useless to me

get old become an inconvenience

when your greatest fear is to be unloved

to be taken for a foolish melancholy woman

then you are certainly a foolish melancholy woman

melancholy thoughts bring sadness

they do not serve you well

step away

free yourself.

Inside every Old Woman………

Is a young woman wishing to be heard

But life flows by so fast

almost without noticing, time has passed

suddenly you wonder

Why wasn’t I prepared to be an old woman?

Should I have taken a class?

attended a seminar?

read a book?

who would write the book?

‘How to be as old woman’

another old woman?

Are some things left better unsaid?

Do we have choices?

Yes, we have limited choices,

unlimited for those who decide

to live our best lives

whatever our age,

to contribute

write your own book

What a Glorious evening finally no Wind!

Wish you could enjoy this evening with me sitting outside listening to my man Bocelli and enjoying a glass of wine, with the sound of crickets debating with my music. It’s an overcast evening can’t see many stars sitting here under the mesquite Tree.

Busy day today finally have a full tank of propane but haven’t lit my water heater yet,okay I tried but couldn’t, it was getting dark I’ll do it in the morning no problem.

I told myself I was going to spend my evening listening to music instead of on my computer, I don’t have tv but do watch a movie on my computer now and again and think I’d sleep better if I turned off electronics earlier but here I am outside listening while writing on my iPad. I just wanted to drop a note here, I’ll finish this tomorrow.

Ive been able to listen loudly because almost no one is in the park, people just leave their rv here and take off for parts unknown and come back when they do, I’ll do that someday probably but I still need to get something to tow ‘youcandoitbabe’ I have too much to do here first.

I have to tell you, I am so glad to be where I am, both psychologically and geographically

Good night