Ghost Walk

Sunday we went on a Ghost Walk in Virginia City.  There were 9 of us and I know for sure that 7 of us are Christians.  Why do I bring this up?  Well, on the Ghost Walk they give a few of those Electro Magnetic thinga-ma-gigs  that lets you know when a ghost is around.  One of us had this thing and it didn’t go off when the others did.  LOL    If you think about it, we were protected by Jesus during all this.

It was 90 minutes of walking, yes, I walked all the way, up and down hills and up stairs (thankfully the stairs weren’t tall steps) with my trusty cane and my trusty hubby, we walked all this way.  We did stop at each place of interest, so I got to rest for a couple of minutes.

In a ghost walk, one learns more about the history of a place.  I feel it provides the color of the town and all that the city was like many years ago with all the mining, bars, bar girls and all.  You learn about fires in the city, not just one but several.  You learn about the people that rebuild the structures.  You also learn about the people who died there.  Yes, they are part of the ghosts of interest, but when you think about it, their stories are interesting.  Whether true or not, still a sad story for each of them.

We did do a lot of laughing, just because the group I went with are  fun.   I think one of the guys was busy praying through it all!  LOL, how cool!  No wonder there were no shadowy figures.

So if you want to experience a ghost walk and see the lights glow on the thinga-ma-gig and/or see a shadowy figure – probably not a good idea to take a bunch of Christians with you!

Dog Days of Summer

It’s been pretty hot around here.  Thankful that it cools down when the sun goes down.  I’ve been busy dog sitting.  I had a puppy for a few days.  It reminded me that I don’t want a puppy … EVER!!!  LOL  Oh.  My.  Word.  “No Bite” was my vocabulary for all 3 days.

Then I had a Westi/mini poodle mix.  We fell in love with this little guy.  He was the perfect size and liked to cuddle.  Now I have a Blonde Cocker Spaniel.  As it’s hot outside and we have no a/c – I called his mom to get the name of their groomer.  He’s getting groomed tomorrow.  I hope that helps with his panting in the house.  I feel so bad for him.  He’s also been a joy.

A friend and I went to the park to visit.  On the way back, there’s a cherry tree, with a note that says, for 20 minutes,  pick all you can.  So we were picking cherries and piling them in our shirts.  It was fun and good exercise for my hands.

Can you believe it is already July?  I have to start packing now so I’m ready in 6 months!!

Our neighbors had a yard sale and hubby got me a Schwinn 5 speed cruiser bike for $10.  We just need to get a tube for the front tire and change a couple of cables and I’ll have wheels!!!  LOL   Now to see if I have balance!!  I’m excited and can’t wait to use it.   Hubby was happy as he was able to get a new full set of camping plates/kettle/etc.  along with table top propane heater and a propane lantern.  Big score at this yard sale!!

Since I haven’t been working, my nails have grown long, to the point that I cannot type.  LOL … I guess I had better think about filing them down.

Well, just thought I’d stop in and say hey!  I’m still here and doing good, considering!  Y’all have a safe and Happy Independence Day!!!

How am I

Well, since I’ve decided not to do the Cytoxan I’ve been wandering around the world wide web and am finding a few things that will help with my lung situation.  Doing a search for Natural Scleroderma treatment, Curcumin was one of the front runners.  It is supposed to help with the scaring, including my lungs.  Curcumin is found in Tumeric.  So every night I make myself a tea, consisting of Tumeric, Ginger and cinnamon as well as honey for a sweetener and almond milk.

My trial results on how I feel after drinking this for a week:  I can almost straighten my arms.  There is just a slight bend in them and my skin doesn’t feel like it’s going to rip when I do this.  The Scleroderma started to go above my elbows and it was difficult and hurt to bend my arms and try to bring my hands to my shoulders.  I can’t touch my shoulders yet, but I can bend my arms so my hands are straight up.  I have slightly more movement in my wrists.  With my palms up, I can bend them back, and bringing them forward, I can go slightly more than straight out – which is a huge improvement.  The biggest thing I have noticed is that I’m not coughing as much AND I can take a deep breath without choking.  The coughing/choking is due to the scarring in my lungs.  It doesn’t help that I also have it in my esophagus so my throat area feels stiff, but I am taking medication for this.

Let me be clearI AM NOT SAYING THIS WILL WORK FOR YOU OR ANYONE ELSE WITH SCLERODERMA – What I am saying is that for ME, I am noticing minor improvements with my symptoms which  I am praising God for, as He created all things and if this is something that will work, I will try it.

There are side effects (as in all things) to taking Tumeric.  It can affect your liver.  So I pretty much drink a cup of the tea at night before bed, when my body is trying to repair itself.  I drink nothing but water now, to help flush out my system so there is no lingering stuff in my that could cause damage.  I only drink filtered water from the Britta pitcher as I don’t want to drink the added minerals in the bottled water.

As for diet, well, I’m not real strict with that.  With limited funds, I cannot go crazy on a Paleo or Veggie diet, so … moderation is what I’m trying to do.  I can say I don’t have much 0f a craving for sweets.  Maybe an ice cream cone, as it’s pretty hot here in this non-air conditioned house.

Today I hooked up the portable swamp cooler.  I love that it keeps the front area of the house cool, however, it is so loud.

So that is  my world as of today.  I hope you all have a great week!!

Now the big drum roll

The results of my CT scan shows that Scleroderma is in my lungs, affecting 3 lobes, hence the 25% loss of lung function.

With little known about this disease, the only thing my Rheumy could suggest was Cytoxan, which is a Chemo drug.  Yes, it will bring all the side effects with this and  … AND … no guarantees this will work on slowing down the progress in my lungs.  With a possibility that it will give me cancer in another organ.

Friday, I was a mess.  Yesterday I decided that the odds were NOT good and I was not going to go on this drug.  If it did not work, my body would be screwed up even more than it is and my immune system would be nil, therefore, I would not be able to be around the grandkids.  So …. NO …. I am NOT going to do this drug.

The other alternative he gave me was to go to UCSF for a second opinion on treatment.  I’ve done my research and the clinical trial at UCSF is the Cytoxan for one group of people; the other is CellCept (another drug that will mess you up).  No thanks.

I know my docs with the hippocratic oath they have taken will not like my decision, but I am searching for a more natural treatment.  I know I have to be careful with herbs and things that will support my immune system, because my immune system is already working overtime attacking my body, so there is quite a bit of caution I need to heed.

Worst case scenario – whatever natural remedy I decide to do, doesn’t work, I have had a better quality of life than putting toxins in my body being isolated in bed.

Yes, somewhere down the line I will be going on oxygen, but that time is not here and I’m not going to worry about that until the time comes.

I could tell my Rheumy did not like giving me this information.  He’s even surprised how rapidly this disease is growing.  But, I have faith in God and I ask Him everyday to guide me in my research process.

Drum Roll Please

Okay, maybe just a small one – I’ve been complaining about breathing or not having enough of air or feeling that something is hindering my breathing – The doc did a breathing test yesterday and I’ve lost 25% pulmonary function.  That is why I get tired, as my reserves are not there.  He also said that it is a good thing I’m not working, so I can rest when I get fatigued and if I have a down day, to rest.  Pushing myself on a down day is not good as I would be worn out and it would take longer to get better.

But … with that said, I’m to stay active  … one of the things I do, if I’m not active at home, I’ll walk around a block.  The fun thing I’m doing is dancing to a cleaning mix on Spotify.  I try not to put too much stress on the knees, but I get my heart a racing.

A dumpster was delivered to my house yesterday.  So I had better get back to going through boxes!  Ugh.

Y’all have a wonder-filled day!!

Flyers in Driveway

We still get flyers thrown in our driveway inside a plastic cover every week.  We don’t subscribe to it, it just appears on each and every driveway in the neighborhood.   MOST of the neighbors pick it up and throw it away.  EXCEPT for THE neighbor next door.  She insists on leaving it out there until it blows into our yard and hubby picks it up and throws it away.  Her excuse is that she didn’t order it and she wasn’t going to pick it up!

Really?  Are you that consumed with yourself that you cannot bend at your waist to pick up the flyer and put it in your trash?!?!   She could have the social service person that cleans her house do it when they are here!!  Why does it bother me?  Because she won’t do it and if hubby doesn’t it will be in our yard until he throws it away.  I know what I would like to do with it, however, that wouldn’t be very Christian of me!

Well, that’s the thing that is bugging me today!  HAH – stay tuned to what it will be tomorrow!  :-)

 

 

May Already?

Wow, a lot has happened since I last posted.

First we had a great time in Lincoln.  It was cold, but my body felt better – go figure!

I came home and we’ve decided to move back to Lincoln.  It will probably be within a year, but God willing, things will work out sooner.

I quit my job at the church.  So many things played into this decision but mostly it was for my health.  I was tired of working and going to bed only to get up for work the next day.  And spend the weekend in bed so I could survive the next week.  Not much of a life and dealing with what I had to deal with there, it wasn’t worth my health.  So I am not working.  I’m enjoying not waking up to an alarm clock and I have to make a list of things to do, or I would stay on the couch watching tele.

Hubby’s job will be ending in November/December, so hopefully we will be able to move by then.  We’ll see!!

I had a CT Scan on my lungs on Monday, 5/12 – if my lungs are starting to get affected by the Scleroderma, then I will not be taking  Methotrexate as it compromises the lungs.  Ugh, just when I finally talked myself into it.  LOL … oh well, we’ll see what is in store for me, after I see the Rheumy.

So that is my news, time to go read.  Talk at ya later!!