Sunny Sunday

It is nice to have a sunny day outside.  I was out in it yesterday as our granddaughter had a volleyball tournament.  She’s becoming a good player and along with a good player comes the struggle of being hard on herself.  Her dad is really good at talking things through with her.  It helps that he talks and not yells.  I was thinking how proud I am of the man and father he’s become.  I couldn’t ask for anything more!!

Our fridge went out (the bottom part not the freezer).  My brain registered on Monday that the fridge didn’t seem to be cold, but I was cold and figured it was me.  It wasn’t until hubby asked me on Wednesday night if I thought the fridge was cold, did I remember my thought on Monday.  We called our landlord on Thursday and someone was out on Friday fixing it.  Unfortunately we lost all that was in the fridge.  Yesterday, we went out to replace most of the spoiled items.  It’s frustrating but that’s the way it goes.  I’m thankful that it got fixed and we were financially able to replace those items.  If we were thinking, on Monday, we could have moved everything to a cooler and put in the garage as it was quite cold out there!!

I must admit, I’m ready for spring.  I saw how bad Northern Nevada got hit with 130-150 miles per hour winds.  It tore up trees, roof tiles, etc.  I feel bad for the cleanup that is going on, however, it looks like they are ok.

My arms have been screaming lately.   I only have 1 pain med left and I’m saving it until it’s completely unbearable.  I go to my new rheumy on the 21st (I think that’s the date).  I can’t wait!  It will be interesting to see what she tells me as my other rheumy had only seen about 5 cases, while this new one has more.  Hoping that she’s more informed on this disease.

Our van is doing good, even though we haven’t driven it much.  With the snow this past week, we tend to stay home until the streets dry up.  The weather is supposed to be good this week so hopefully the snow will be gone.

That’s all we’ve been up to.  Hope you have a great Sunday!!!

Happy New Year, 19 Days Late

Wow, was November really my last post?  Well, the old house got packed, the truck got loaded, thanks to many amazing friends and we drove half way across the country thanks to our son!!  Also Thanks to our oldest daughter for letting us crash at her house along the way!

We found ourselves in Nebraska, Homeless, Car-less and Jobless.  It’s a weird feeling when everything you own is in a 10 x 15 storage unit!  Well with overflow in our son’s garage and basement.  We lived in his basement for a month, which was nice as we were able to spend Christmas and New Years with them, get to know the baby or have her get to know us.  LOL

On December 31st we signed a lease for a 2 bdrm, 1 bath duplex (we’re on the main level and have neighbors upstairs.)  However, we didn’t move our stuff in until the 2nd, again thanks to our son and his friends!!

We’ve actually only lived here since the 7th as we’ve been sick for a month and no energy to do this.  We learned from our new doctor here that the first month in a new area, your body has no immunity.  Well, it’s a double whammy as I don’t have an immunity system at all.  We’ve managed to catch this every lingering upper respiratory mess.  One or two days you start feeling better and then it’s back to feeling crappy for another one or two days.  And that’s on antibiotics.  I’m hoping we’ll be done with this soon!!  I’d say we both are about 75% better and just started the second round of antibiotics … yeehaw!  I’ll be so very happy when this coughing stops along with the blowing of my nose!!

We still are car-less, so we borrow our son’s vehicle when we need to go out.  Wow, that’s come full circle … having to ask to borrow the car!

It has been very cold, however, this week it’s been real nice.  I’m able to go out in a sweatshirt and sweatpants.  I still wear my warm fuzzy boots, keep my feeties warm!

All in all, we are doing good.  Trying to get into a routine, but not compromise the body’s immune system.  Such a fine line I have to walk.  I need to listen to my body more and not want to go and see the grandbabies in their activities.  This Sunday was a good example of that, I had insomnia Saturday night and my body was telling me to stay home and not go out.  So I missed the band concert and the b-ball game.  My son did take me to the pharmacy to get the next round of the drugs.  So instead we stayed home and are tying to put the front room together.  It’s coming along, I still have a few things to do, but it may have to wait until tomorrow, we’ll see.

Hope you all are having a great Monday!!  I’m going to see what I can or cannot do … lol … dang body!!!

I know, it’s been a long time

The months have flown by and we are now in November.  I have about 1/3 of the house packed and we load the truck on December 6th.  God help me, please!!

As you can tell we are still moving to the Midwest.  This is similar but different from the last times we’ve moved.  Why?  I’m so glad you asked, because I would be in the same amount of completed packing, because I was working full time.  Now it’s due to my body not cooperating with me from Scleroderma.  However, thankfully I march on with help from family and friends!!

This morning while going through my emails I came across an article about Chronic Illnesses.  The article was written by a fellow sufferer of these illnesses.  Mind you, she has Lupus, Sjogrens, & Rheumatoid Arthritis, however, they are all in the same family as my Systemic Sclerosis (Scleroderma).  All of these diseases are debilitating, painful as well as frustrating when one has been an active person.   If you have time, it’s a great read.  You can read it here.

Every point she made is so true.  I was glad to know I’m not the only one feeling this way.  HOWEVER, I must say that I have the BEST set of friends and family.  They don’t judge me for what I can or cannot do.  They are very willing to help me with whatever I need, if I only ask them.

She talks about having to grieve daily over the new daily things she cannot do.  Oh. My. Gosh.  She is so right!!   I know to those that are well, this makes no sense.  But to those of us that suffer, everyday there is a new degree of things that can’t be done.  As I type this, I can see my fingers curving more and more.  I’m not able to spread my hands.  Here’s a test, take a ruler, open your hand and spread out your fingers.  Measure from your thumb to your little finger and note the measurement.  I just did this and I measure 5 1/2 inches.  Weird!!

When my husband holds my hand, if we interlock fingers, his fingers only go to my middle knuckles because the rest are stiff.  Another thing to grieve, not being able to interlock fingers with my hubby.  It’s a sad and scary thing to realize what normal function is gradually slipping away.

She talks about the pain.  Oh yes, the pain.  You know the pain can be a real pain in the a** and it is EXACTLY as she mentions in this article.  What I find frustrating is the FDA in all their infinite wisdom, changed the medication I’m on and limited the amount of pills given at a time.  Not only did they do that, they DO NOT allow refills.  So that means, I have to go to my doctors office each time to get a new script and take it to the pharmacy to be filled.  The ONLY people this hinders are those that have a legitimate reason to be on these medications.  Those that use them to get high, will be able to obtain them some other way.  Can you tell I’m just a tad frustrated?  Oh well, Let It Be as The Beatles sing  OR Let It Go as in Frozen.    Or as her article reads, “Not giving up, but giving up.”  Some would think that is strange, but it really isn’t.  Giving up trying to figure out the whys, what-for, the infinite wisdom of those in charge … etc.  It does make for a better blood pressure reading.

When hubby goes off on something, I just look at him and tell him, I can’t change it.  OR, I don’t have the brain space to deal with that right now.  Which is true!  I now get overwhelmed.  This person who used to be an Escrow Officer handling thousands and millions of dollars now gets overwhelmed and has to stop, breathe and focus my brain and write down what I need to accomplish for that day.  AND not be disappointed that I didn’t get everything on my list checked off.  I spend a lot of time shaking my head at myself.

Her 3 things are very helpful.  I also a fourth thing, which should be my first thing, that is my faith and trust in God.  My fifth thing, which should be my second thing, is my counselor.  Without her, I would not have made it through this year and preparing for this move.

 

 

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.