Friday, April 3, 2015

This morning I was pleasantly surprised by a text that the kids wanted to come over.  As I got out of bed and dressed, they were already knocking on the door.  They had run over to our place.  LOL … that was too funny.  We talked for a little bit, then watched the recorded Dancing with the Stars while our grandson was playing a game on the computer.  Then they switched, our granddaughter played on the computer and he watched the turtles.  Once grandpa was up, we went to lunch at Raising Cains.  If you have a Raising Cains in your area and they are running an event about used cell phones, well, that’s a pretty good deal.

The deal runs through the end of April.  If you turn in an old used cell phone, and buy one meal & a drink, you get another meal of equal or lesser value free  (but you will need to buy a drink for the free meal.)  We turned in two used cell phones and got two free meals, such a great deal!  Why do they want used cell phones?  I’m so glad you asked.  They recycle them and in turn get calling cards to send to the troops out of the country to call home.  I told you it was a good deal!!

I’ve been reading a book titled, Heaven, by Randy Alcorn.

What is your idea of Heaven?  Boring or exciting?   What is your idea of hell?

In reading the first three chapters of Heaven, I desire to have my final destination to be Heaven.  I would not want to be in hell as “…the wicked suffer terribly, are fully conscious, retain their memories and reasoning, long for relief, cannot be comforted, cannot leave their torment and are bereft of hope. (Luke 16:19-31)…”  “Christ says the unsaved ‘will be thrown outside, into the darkness, where there will be weeping and gnashing of teeth’ (Matthew 8:12)”

There are many times that the Bible describes hell as a place of weeping and gnashing of teeth.  That doesn’t sound like a pleasant way to spend eternity to me.  I’d rather be in Heaven where I am with family, being loved, and most of all, with my Savior.  I can’t think of a better way to spend eternity.

In the dark, all alone, in pain, fully conscious and longing for relief that never comes, weeping and gnashing of teeth … um, no thanks, being in the light and love and peace and no pain in a new body is where I want to be.  Easter weekend – Thank You, Jesus, for suffering and paying a debt that I could not pay and thinking of me when you were suffering and dying on the cross.

He was despised and rejected—
    a man of sorrows, acquainted with deepest grief.
We turned our backs on him and looked the other way.
    He was despised, and we did not care.

Yet it was our weaknesses he carried;
    it was our sorrows that weighed him down.
And we thought his troubles were a punishment from God,
    a punishment for his own sins!
But he was pierced for our rebellion,
    crushed for our sins.
He was beaten so we could be whole.
    He was whipped so we could be healed.
All of us, like sheep, have strayed away.
    We have left God’s paths to follow our own.
Yet the Lord laid on him
    the sins of us all.

Isaiah 53:3-6 NLT

Thursday, 3/26/2015

Yesterday I made a pot roast in the crock pot.  It was so so easy and very tasty!  I took a 2-3 pound chuck roast, lightly browned both sides, put it in a warm crock pot, emptied a french onion soup packet on top of the roast, poured in a 20 ounce of coca cola all over the roast, added a small bag of small new potatoes (washed, of course,) a bag of baby carrots and one onion cut in 6 sections, put the cover on and let it cook on low for 6-8 hours until meat is tender OR on high for 4-6 hours, again until meat is tender.  For thicker sauce, I mixed water and about a tablespoon of flour until the flour was dissolved and poured it into the pot, stirred and turned it to high so it would thicken a bit and serve.  It was yummy.  If you want less liquid, you can use a 12 oz can of soda.  What we’ll have for dinner tonight … well, I have no idea!  HAH

I have two devotionals that I read in the morning.  They both are on YouVersion and if you want the app, click here.  The first devotional talked about work.  About changing the culture at your work.  It reminded me of Michael Jackson’s song, “Man In The Mirror,” because if you want to make a change, you have to start with yourself.  I’ve come from a bad experience working at a church.  Not all church staff are humble, me included.  So today’s devotion was a good reminder.  It is a good reminder to take 15 minutes before you drive onto your work’s property to settle and reset your mind to change your attitude, even if you are going to be facing one of the most difficult days of your week.  Now that I’m not working, I can apply this everywhere I go: doctors office, grocery store, hospital, etc.  How  many times have you almost been hit with a cart in the store?  As I walk with a cane, it seems like the cane is a beacon for people to aim their carts AND act frustrated at me.  I always say that I hope they do not come down with a debilitating disease that will leave them walking slower and needing some type of assistance.  So, yes, I do need to take those few minutes to reset before I enter the store.  I have to go to the store today … oy!

The verse of the day was Psalm 84:10:

“A single day in Your courts is better than a thousand anywhere else!  I would rather be a gatekeeper in the house of my God than live the good life in the homes of the wicked.”

I asked myself, “Is this true of me?”  What does that really mean to me?  Do I covet the good life of the wicked?  What does a day in Your courts mean?

I do wish I had an unlimited income so I could live in a big house with a cleaning person and take outrageous vacations, traveling the world.  But does that mean I would rather live the good life in the homes of the wicked?

I got to thinking to myself, “Self, what is one day in His court?”

His court is Heaven.  To spend one day in Heaven, with my Father and hearing the never ending voices of the angels worshiping and singing praise; OR Being the gatekeeper in Heaven at the gates and catching a glimpse of all that. is so much better than the best day of a good life with unlimited income.   The thought of how relaxing and stress free that would be to be in His presence and light.   For the commentary, you can click here.

That house and vacations just don’t seem that desirable any more.  I love the promise He has given me, an eternity with Him.

Sorry I’ve been so lax on the postings.  I haven’t had any motivation to write … anything.  But a friend, S4L, reminded me today that I should write again and that if I wait for motivation, I won’t write again.  You know what, she’s right, so here I write … lol

Life in the flat lands has been fine.  It’s starting to warm up and feeling springy.  It wasn’t much of a winter, which I’m thankful for, however, it doesn’t help with the dry conditions.  There have already been several wild fires, which is strange.  When we lived here before, it was so moist out, there were no wild fires.  Weird to come back to a dry Midwest.  It will be interesting to see what the summer will be like, however, I can wait to see that and just enjoy the temps that are now.

On St. Patrick’s day, we picked up our grandkids from school in our green van.  My hubby had a tee shirt with a green plaid vest & bow tie screen printed on it, in addition to wearing a green bow tie.  I had on a green sweatshirt with green shamrock clips in my hair and green beads.  Our grandson made it to the van first and said, “Whoa, that’s a lot of green you’re wearing!”  As our granddaughter was tied up and taking longer, hubby got out of the van to wait for her.  The car behind us saw him and started laughing at the getup.  She finally arrived and tried not to react.  Darn, she’s getting to that age where she tries to not react to the crazy things we do.  I guess we’ll have to try harder!!

My oldest sister has me hooked on National Geographic’s Live Wild Safari, which is online twice a day, morning and night drive.  You can only watch it online through the live feed.  As I won’t ever physically be able to go to So. Africa to go on safari, it is so much fun to watch, when I can and when there is no problem with the feed, the wild animals they come in contact with.

There have been several leopards they follow.  They are such beautiful kitties!  One has quite the personality, while the other that is the same age, just ignores the vehicle & camera.  They walk right next to the vehicle and just look at the guide.  The one with the personality actually charged the vehicle and stopped close, just because he could.  It even looked like he was chuckling after he did it.

Today they went to the hyena den and found the mom and three cubs.  It was late afternoon there and starting to get dark.  The mom was getting ready to hunt, leaving the cubs at the den.  The guide said they were going to leave the cubs as they didn’t want to call any predators attention to the cubs while mom was gone.  They were so cute.  Before mom left, one of the babies walked right up to the vehicle and looked at the camera.

One never knows what will happen on each drive.  If interested, the live feed is from 10am – 1pm Eastern time and 12am – 3am Eastern time, everyday.    It is quite fun as you can interact with the driver/guide through twitter or email.  Click here if you’d like to check it out.  During off hours, they run a loop of what is seen on that day’s drive.

Watching these animals and how they survive as part of the food chain, I’m reminded of a passage I read this morning:  Matthew 6:25-34 – Do not worry.

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

We humans are much more valuable to God than any bird or animal.  If we truly follow Christ and have Jesus in our hearts, there is no reason to worry about anything as He provides.  The question is, can you surrender and wait in faith for His provision?

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.

 

 

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.

First Month

My experiences in the first month with Lupus – it S U C K S!!!!   LOL, I felt so lost as everything I had read was such a doom & gloom type of thing.  Yes, it said that many have gone on to live productive lives for 30+ years, but it got me to thinking, if I’ve had this for awhile, how many of those 30+ years have I already spent??  Just one of the thoughts that goes through my mind.

So I actually had to grieve my health.  To give myself permission to feel the loss and sadness of not being able to do what I would take for granted.  So basically, I went through the 5 stages of grief.  I kept going back and forth between anger and depression, one feeding the other constantly, however, until I found a book about the first year of Lupus, by a person who was diagnosed with Lupus in 1999, did I start moving toward acceptance.

In this book everything that I am walking through, physically & emotionally, she has walked through and talks about it in her book.  It’s like having a friend right there with you, letting you know what to expect, however, NOT telling you what to do.  Which is pretty wise on her part as each body is different and unfortunately, Lupus affects each body different.    So I’m getting support through a book, even though many people I’ve come across have said that they know so and so who has Lupus and I can give them a call so you can talk.  I know it is a good thing to have a support system, which I do have, but to have a live support group of lupus fighters, I’m not ready for.  If I get too much info, my eyes glaze over and I tune them out.  So reading this book is a blessing.  I can read as much as I can handle, put it down, then in a couple of days, start up again.

One thing that she says, and unfortunately, I’ve found out myself, is that there will be trial and error.  More like trial and fire!  I’ve been trying to drink more water.  I detest the taste of water.  I know some of you will say there is no taste, but there really is.  So I have to chug it down.  If I have to drink water, I’m a water snob and have to drink bottled water.  Well, we ran out of bottled water and being the stubborn person that I am, wouldn’t drink even the Britta filtered water.  Instead I drank diet soda all day long for almost a week.  Well, my body let me know that it wasn’t happy with that.

Both of my wrists, both of my ankles and the balls of both of my feet felt like someone was stabbing them with nails all at the same time.  I’ve already been in pain, but with that much pain, I couldn’t move and all I could do was cry.  I did take a pain pill, but it was taking forever to get to these areas.    Hubby was the best, when he came into our room to check on me, he saw I was crying.  So he turned everything off in the front room and came to bed and sat with me until the meds took affect.  I now know I cannot do artificial sweeteners.

I had mentioned to one of my friends that I caught a glimpse of the pain Jesus went through for us.  If in my flesh I couldn’t handle it, it is just amazing to me how much He loves us to go through all that he went through for us.

Thankfully my regular doc tweaked my pain meds.  The pain isn’t a debilitating pain/ache.  I can actually move without too much discomfort.  Friday night I actually danced at the concert in the park.  I paid for it later, but after not being able to move without extreme pain for the last 5 months, I was celebrating with dance.   I even made it to church last night!!  I haven’t been in a long time.

So that is my first month’s experience.  I now feel almost normal, but still have to be careful not to over do it.  As the doc is able to manage my pain, there isn’t much he can do about the fatigue.   What my brain thinks I can do, I know I can only realistically do about 1/4 of what my brain thinks.  Dang that inner child!!!