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.

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

I Will be an Artist! Update 3/7/19

I was pretty happy being a nurse for many years but when I retired I had no plan for what comes next, then I read that anyone can be an artist so I thought I’m anyone, I  will be an artist.

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I am a woman wondering what comes next, open to new ideas, willing to exchange thoughts but confused and restless about who I am now in these later decades of my life.

Being a twice-retired person of meager resources and advanced age, I started out cheap, buying craft paints and board panels and skinny canvas. I painted flowers the ‘one stroke’ Donna Dewberry way. (she is the one who said anyone can paint) I had fun painting pretty flowers for children and sold them at school and community sales.

But lately, I have been watching u-tube videos of abstract painting and this is my new favorite way to paint.  I am a self-taught (artist) painter with help from U-Tube videos, Mr. Lang and Ms. Dewberry and  Mr.Tim Gagnon plus a heap of art how-to books  There is so much to learn, so many new ways to create art, I’ll need another life-time to learn all this , maybe next life?

By the way, this painting became an  amazing table! Resin was the perfect  finish!

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sold

Update 3/7/19

Still of meager resources and even yet older, Life has moved on with me to a very new reality, an old lady on wheels. And I’m loving this new life style with GiGI my gas guzzling RV and my Smart car youcandoitBabe.I’m excited to get my life in my tiny RV settled soon so I can get back to painting I’ll need to find a space, I thought perhaps I’d paint outside at the table but it is really windy here, not sure it’s always as windy as it has been here lately, maybe it calms during the summer. Other than the wind, I think this is the best place to be now, warm and snow-less.

Update 7/19

I found a space to paint in, Kathy’s Studio is almost a reality.

Flan de la casa

Have you ever laughed uncontrollably about something no one else thought was funny? I didn’t we want to forget this post idea so I made a voice memo to myself. I tried to add it here but haven’t been able but there I am laughing uncontrollably about what?

As I was trying to sleep I got this image of me with my family going out my son who was was 8 or 10 in this dream-like image and he says I want hot dog buns. This never happened in real life and again I’m laughing. Hysterically.

Itts like the time we went out to eat and my daughter says flan de la casa and we all started laughing, that really did happen as Nancy can attest bewildered that we found it so darn funny! Even today I can still grin about it

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

Hysterical laughing is almost frightening, the sense of lost power, tears rolling down your cheeks and then you feel that oops damn and you probably look pretty silly. But you are laughing and that is good for your soul

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.

What a Beautiful Day, Time to get Busy!

It was a beautiful morning only 65 degrees but Charley was shivering, I will need a jacket for him sooner than I thought he has very thin skin (me too) So I spent much of the day in the studio trying to make one. First I tried using a Mexican blanket I wasn’t using but that was not a good idea because after cutting it up I realized it really wasn’t warm, and besides I’d made a mess of it. I looked for patterns on line but did poorly making my measurements of Charley though he tried to cooperate but got impatient with my “stand still Charley”. then I remembered this huge soft bathrobe my sister gave me a while back and figured I could share a piece of it to make him his own bathrobe.

So far it’s not working, after hours of trying I gave up for the day and will try again tomorrow hoping we have another cool morning. It was a beautiful day until later when the winds picked up and blew over my chairs, all good

Living with Charley means making some changes, like when do I get groceries? He hates the car and snuggles too close to me, maybe his own seat belt may help him feel more secure but I doubt I’ll ever be able to leave him in the car to shop and I know he will not be quiet if I leave him in the RV alone. So now I’m seeing how long I can wait before getting groceries, using the staples I have on hand. I’ll probably save a heap of money staying out of town!

Could I say he’s a therapy dog? What kind of requirements are there? He certainly qualifies, giving me emotional support and loving companionship. Does he need a badge? Who gives out the badges? Can I make him a badge or whatever, guess I’ll look into this possibility, he is a calm pooch and when I took Becky out to lunch for her birthday he sat nicely under false pretenses of being a support dog.

Later………

After some research it seems there are no special qualifications for the dog, but I would need something wrong with me to need a emotional support animal. I’m old, alone and sometimes feel a little bit lonely so I qualify and could probably get a MD note saying so but don’t expect to need one, really who is going to ask me for it? Its not like I want to fly with him or rent an apartment.

After spending $100 on a collar, leash id and vest I now have an emotional support pet that I can take in the stores or where ever I go, he goes with me.

I guess I don’t have to tell you that I ordered the wrong set of what I need , at least I noticed it immediately but not in time, so there you are.

Hoping to catch up with myself again!

Finally starting to cool down here in Caballo. I even was chilly this morning but we’re still in the upper 80’s all week.

We went out to get a new leash this morning, the one I got from Joan broke and I couldn’t repair it, they allow you dog in the store if on a leash, they have everything Charley needs at this place, which is very good as I won’t be able to bring him in when I need to grocery shop. It gets complicated, he barks if I leave him alone for more than 2 minutes.Now he is sleeping in my space and I am in his., we need to work on that.

The park hasn’t been real busy, people park for a night and are gone in the morning. There have been some really huge RV’s in here lately. Soon the snow birds will be here, CJ (owner)expects many of the same people as were here last year. A nice sense of community here. I look forward to seeing them.

I’m having serious procrastination issues lately can’t get started on my to do list. It’s because I’m reading too much. I get library books on Overdrive. and I just keep reading. I don’t even cook. Do you have it on your reader? Saves huge amounts of money and I can read anytime on my ipad. If you have a library card you can download it. I just don’t have space for a lot of books and this is a great option.

My paints have dried up so I ordered new, can’t wait to get started, I want to paint the mountains that I see from here, it won’t be easy but I have time to work on it, ready for a challenge.

I’ve only had one Acupuncture client recently, one treatment only but I wasn’t able to help her with her stiff neck, she only gave me one chance had she been willing for a 2nd treatment I think she would have been fine, she wanted a magic pill so went to a clinic. I thought I had a good chance to fix her as she had only been hurting 1-2 days. She’s is feeling better now, I’m glad.

Charley and Me

Life changes when you live in a confined place and add a dog to it.

But I chose well and Charley makes no demands, but obligates me to at least three walks daily which is only good but that first am trip comes early…….. which makes me start my day earlier than I want, but even that is good.

I could go on and on, or tell you about some of his “cute” dance patterns he makes before the multiple droppings to get a treat. (He loves this treat so much that I’m afraid he’s going to hurt himself trying to do his business too often)

He’s a cuddle baby

We’re both happy with our choice.