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!!

Walking through Mud

That is how I feel.  It is taking everything I have to move.  Not sure what that is about.   I’ve had a sore throat for a week now.  I did a candida spit test and I have candida, but not as much as I thought I would have.   I probably should have taken the test BEFORE I started the Candida Cleanse.  HAH – I always do things backwards – no wonder my body does the same.

Listening to The Black Atlantic as part of the coffee house music on Spotify.  I should really get up off my rear and accomplish something, but I’m not sure I am able.  I have one thing crossed off my list today, not a good start as it’s 11:26am.

I watched The View to see Barbara Walter’s last show.  I have her special set for the DVD – I don’t know why, maybe it’s just a part of history in the making.  It is interesting to see how many women she opened the door to be a news person.  HAH, after the show, the ladies on our local ABC channel commented about why they weren’t there.  I yelled at the Tele and said because you aren’t that good!!  The whole daytime news team (which includes 1 male)  can’t read a script.  Sad Sad Sad!!

The local CBS channel morning news team, oy … when this person arrived, she couldn’t figure out which camera to look at.  Of course, I yelled at the tele – Hello, look at the camera with the light on top!!  Sometimes I wonder if it’s the producer messing with her, switching the camera back and forth.

I guess with everything, standards have ‘laxed.

Well, time to start checking off items on the list  Lord, help me!!

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!!

The First Day of February

Disclaimer – I’m not responsible for any typos or non complete sentences as I’m blogging under the influence.  

The progression of my disease keeps  me in pain.  I’ve had to back out of a couple of meetings due to my body not cooperating with the morning.  I miss Toastmasters and Women of Grace, because I’m doing good just getting to work before the doors open.

I’m now walking with a cane.  I don’t know why I hadn’t done this before as it takes the weight off my knee, so hopefully it won’t be as painful AND I need to stop being stubborn and just use the darn thing!  The cool thing about this cane – it was my brother’s.  Hubby cut it down for me.  I’m still getting used to being in sync with walking and steps, but I’m getting there.  I still cannot go up a flight of stairs.

In March we are traveling to Nebraska to meet our new granddaughter.  Then after that we will be going to Vegas to visit family.  I’ve been debating on taking advantage of the wheelchair offered at the airport.  I probably should use the wheelchair that way I won’t end up over exerting myself and be down for a day or two of my 1 week vacation at each destination.

I left work early yesterday as my knees decided to rebel and the pain was affecting my thoughts.  I couldn’t stay focused with the throbbing.  Hubby picked me up and brought me home.  He surprised me with the cane, as it had been a couple of weeks that he said he was going to cut it down.

I think my knees finally had enough as it had been an active week at work.  The constant walking/moving/up and down out of the chair was enough that they finally decided to quit working.  My right knee wouldn’t bend without shooting pains.  I get aggravated but there isn’t much I can do.  Well, I could start taking a mild form a chemo drug (in addition to the other ones) to see if it will work on the pain, but I’m still being resistant to this option.

I have applied for a handicap placard so we can park closer wherever we go.  I’m hoping to have it before we leave for Nebraska at the end of this month.

I’m excited to travel and see my kids/grandkids but apprehensive as I’m not as mobile as I was the last time I saw them.  Heck I’m not as mobile as I was last March.  Strange how fast this disease is progressing and affecting me.  I’m thankful hubby is going with us as I know I would not be able to travel without him.  I know he gets frustrated being my caretaker, but he really is there for me.

We’ve talked to my doctor about disability.  As it takes so long I guess I really should look into it.  If I continue to progress as fast as I have these last 7 months, what will the next 7 months look like?

The 30th was one of our pastor’s birthdays.  Actually the one I have a good working relationship with.  I made him the Better Than Sex Cake (that’s what it’s called) or as my brother-in-law calls it, “The Chocolate Death Cake”!  LOL, I was glad to hear he really liked it.

Sunday is the Super Bowl.  Which team are you rooting  for?  As my Steelers and  hubby’s Vikings are not there, I don’t have  a  preference.  I saw a preview of the puppy and the horse commercial (of course it was Budwiser) so I may be watching for the commercials AND to see Bruno Mars.  Other than that, I don’t have much interested in the game.  Personally, I think the Broncos will dominate the game.  But kudos to both teams for getting to the Super Bowl!!  How cool is that!?!?!

I’m going back to bed to get these legs up!  As I spend so much time in bed, I may need to get a new mattress or switch the one from the spare room to our room.  I’d really like to get a memory foam mattress and I keep eyeing the ones on Overstock.com … but that will be in time.

Well, y’all have a great weekend.  Talk at you later.

Almost Christmas

Christmas is so close.  I know the next couple of days will fly by as we have 5 Christmas Eve services between Monday and Tuesday evening.  Thankfully, we are closed on Christmas AND there are no services next weekend for Volunteer Appreciation Weekend.  It takes many volunteers to put on a service, not to mention an additional 5 Christmas Eve Services.  I’m not sure hubby will know what to do with a weekend off.

I wasn’t going to put up our little tree.  When I walked into the house Friday night, hubby had our little 2 foot tree up.

2013 tree.

He did a great  job.  I guess you can tell what movie I’m watching on the tele – “A Knights Tale”   HAH!

Yesterday, I went with a couple of friends to S4L’s house.  She had a class on Essential Oils.  I’ve  learned quite a bit and look forward to learning more!  Scleroderma has made a mess of my skin (among other things).  After 3 different oils rubbed into my hands and 2 different ones in my water, this morning my skin felt calmer and some of the weird scaly spots are not as bad.  The interesting thing the instructor had mentioned is that most auto-immune diseases are caused by an over abundance of Candida in the body.  What she said made sense and it would definitely be worth checking this out.  As I’m still within the 1st year of this disease, what if this cures it?   I’m all for that!!  I must say that I was exhausted when I got home.  Not sure if it was drinking information from a fire hose or the oils working in my body.  Today, I’m vertical, which is a great thing!

The new medication I started on Friday, can cause facial muscle twitches, seizures and more lovely neurological side effects that I’m not too thrilled about.   Plus another future medication is a mild form of chemo.    I’ll let y’all know the progress as I venture on this new path of Essential Oils

Later today we are going to S4L’s house for a gathering.  It will be fun, as this will be the last time I get to see her and her family before they leave to visit her family in Seattle.  It’s a potluck so I’m going to make Mac & Cheese.  LOL, hopefully it will turn out as I haven’t made it in quite some time.

I wish you all a Merry Christmas!!  Have a great time with you family and friends and hopeful in the perfect gift that was given to us over 2000 years ago!!

Love you all!