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.

Happy New Year, 4 days late

I started the new year with a bang – sick – again!  I am not amused nor amazed!  Of course, hubby is worst than me.  All I can say is – Not. Again.

I was so happy to say goodbye to 2013.  It was a rough year, starting from the beginning.  I had high hopes that 2014 would be better, that is until we came down sick.  There’s an awful flu going around that can turn into viral pneumonia.  I’m worried that is what the hubs has.   Being viral, well, not much they can do.  He’s been on antibiotics to keep any infection at bay, but his ribs are hurting evrytime he coughs or sneezes.   He does have the strong cough syrup, I may give him another dose so he can sleep.

Looking out my window, the sky is blue and the sun is shining bright.  I have the front door open to let some air in.  I really just want to go out there and wander.  My knees are not letting me do too much wandering these days.  They hurt and I wince, sometimes scream, when I have to move them.  I’m not thrilled that the right knee is getting as bad as the left.

The time is getting closer for the new grand-baby’s arrival.   I can’t wait to meet this little bundle of joy.  Thankfully both mom  & baby are doing well.

Not much else is going on from this side of the computer.   I hope you have a great weekend!

 

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!

 

Discouraged

Tonight I was feeling discouraged and loss of hope.  So strong that I was mad, sad, frustrated and felt that I don’t have a purpose.   What is God’s purpose for me?  I’ve wasted my healthy years thinking of me and now that I’m not well, I’m still thinking of me.

How do I proceed to do what God put me on this earth to do without being bogged down with thinking about what I’m going through.  How my body is changing with Scleroderma.  How do I go through the physical changes and not get so discouraged?

While sitting in my pitty party, God smacked me up side the head and told me to look up the verses in the Bible on Discouragement.

There are several that struck me and thanks to hubby’s Life Application Bible, I was able to go through the verses and read the commentaries.

The ones I highlighted in my Bible are:  Deuteronomy 1:22; Deuteronomy 31:8; Joshua 1:9; Joshua 8:1; 1 Chronicles 22:13; 1 Chronicles 28:20; 2 Chronicles 20:15; 2 Chronicles 20:17; Job 4:5; Isaiah 42:4; and Ephesians 3:13.

Over and over I’m reminded Do not be afraid, to be strong and courageous.  Do not be discouraged.

In the commentaries of these verses, one said the only way to lose is to give up.  Giving up is something I think about.  What if I just gave up and stayed in bed all day long every day.  So when I read, “The only way to lose is to give up” – well that got my attention.

Another commentary really hit home as I’ve got some things to face and deal with.  In 1 Chronicles 28:20 it says, “Be strong and courageous and do the work.  Do not be afraid or discouraged for the Lord God is with you.  He will not fail you or forsake you until all the work for the service of the temple of the Lord is finished.”  The commentary of this said to not be frightened of this task.  Fear can immobilize us.  The size of a job, it’s risks or pressure of the situation can cause us to freeze and do nothing.  One remedy of fear is found here; instead, get to work – getting started is often the most difficult and frightening part of a job.  Yes, I’ve been hit by God’s 2 x 4 again.  It’s such a simple solution, but a hard one in the flesh.

The best commentary is about 2 Chronicles 20:15 – We may not fight an enemy army, but every day we battle temptation, pressure & rulers of this dark world, who want us to rebel against God.  Remember as believers, we have God’s Spirit in us.  If we ask God’s help when we face struggles, God will fight for us and God always Triumphs.

I love the list of how to let God fight for us:

  1. By realizing the battle is not ours, but God’s
  2. By recognizing human limitations & allowing God’s strength to work through our fears & weakness.
  3. By making sure we are pursuing God’s interest and not just our own selfish desires.
  4. By asking God for help in our daily battles.

Why do I try to do things in my own strength.  Why do I get discouraged when it says right there that He is with me, fighting for me?

What started out as a very discouraged, no hope evening has turned into a comfort and encouragement from my Heavenly Father.  I can’t wait to attack the next verses on Hope and Illness.

Don’t forget to Fall Back

It’s that time of year, for those states that do the time change,  to move the clocks back an hour or you will be real early for whatever you have planned for Sunday Morning.

This is new – I guess I’m going to watch the hour turn back as I am wide awake thanks to insomnia.  Sometimes my pain meds make me wide awake, so here I am staring into the computer screen.

I’m glad I don’t have to work tomorrow.  I may finally fall asleep around 5am or so.  However, I do hope it’s earlier than that!

This morning I had a class at the church.  I had to be there before 8:30am so I could open the building and make coffee.  After suffering a bit from insomnia last night, it was around 3am-ish when I fell asleep.  I rolled out of bed around 7:30am, ate, got dressed and zoomed to the church.

Ugh – this has got to stop before my body clock gets completely out of whack!!

I’m hoping the weather will hold out a little bit longer as I need to get the leaves raked up or borrow a blower to corral them into a pile and put them in the hopper.  As that sounds a lot like work, it may take me a couple of weekends to accomplish that.  I’m not sure the weather will cooperate, but we’ll see.

Here we are in November.  I only have 3 more Saturday classes and then it will Thanksgiving.

We haven’t figured out what we are going to do for Thanksgiving.  Again, I can’t decide if I’ll cook or eat out or both!  Sometimes it’s fun to go out for Turkey dinner at a casino and then cook on Friday, so we have left overs for the weekend.  But, you know me, we’ll see, as I always make up my mind that week, when everything is gone from the stores!

 

 

This is new

With this disease going up my arms, my forearms are now getting the tightening/stiffening that my hands would go through.  My hands would be stiff and sore, but then they’d feel better in a couple of days.

Yesterday, my hands were sore, tight & swollen.  All morning I really couldn’t use them.  After our staff meeting, I went home for a pain pill and rest.

Today, my hands are not as swollen, but the joints look inflamed.  Plus my forearms are getting tight and stiff.  It’s quite a strange sensation as it starts out like an Indian burn, then it aches & throbs (which is what is happening now) and then it releases.  Just strange I tell ya, just strange!!

I went to work this morning, in addition to my early morning Toastmasters meeting.  By 4:30pm I was done and left the office 15 minutes later.

Now, I’m aching and ready for my meds.  I think I’ll put on a video and crawl into bed, while hubby goes to church to do his Safety Team thing!

Hope your hump day was a good one – so glad we are on the down slide to the weekend!!

 

I’m singing along with Pandora trying to get the cobwebs out of my voice.  I have a wispy Marilyn Monroe voice right now.  I’m not sure if it’s because the cobwebs haven’t cleared or if the disease is affecting my voice.  Something to ponder.  I find that my range is lower than normal … let me just say … that is interesting!!

My favorite song is Louis Armstrong’s “What a Wonderful World” – my sisters did a 50 year birthday DVD for me with this song and the pictures of  me through the years.  Yeah, it made me cry!  Granted that’s been 4, almost 5 years ago, but it still is one of my favorite things they’ve done for me.

Yesterday we painted our Operation Pastor’s office.  He is off in Africa along with our Lead Pastor.  Before our OP left, he dropped many hints that he wanted his office painted.  so, his Admin Asst. and I spent yesterday afternoon painting.  Thanks to her husband, as he helped move the furniture out and back in when we were done.  We are excited for him to return, which won’t be until 10/22, when he’s back in the office or shortly thereafter.  Of course we cannot do something nice without playing a prank – which we do have something planned.  Should be fun!!!

When our pastors leave on a  mission trip or on vacation, we decorate their office for their return.  One never knows what we’ll do to the office and sometimes we can get crazy.  Our Comfort & Care pastor, the one I assist, had Dora puzzle pieces hanging from his ceiling with fishing wire;  Legos on his shelf!  He’s talked about writing a book, so I created chapters on composition books with his sayings.   As he’s the only Elder left while the other 2 are in Africa, I may have to dig out his chapter that says, “Bang head here  X”   LOL, either that or get him some nerf bonker things.  HAH!

So it’s Monday night and my knees are aching.  Thursday or Friday I’m going to get them X-Rayed or maybe Wednesday or Friday – not sure – maybe I’ll just do it Friday.  My doc appointment is the following Thursday.  I’m not thrilled at what he’ll tell me.  There are 3 things that I’m anticipating: 1) shots in the knees; 2) surgery; 3) nothing they can do.  You can see why my hesitation.  If it’s surgery, well that won’t be happening, I’m trying to pull out of a financial struggle.  Plus the fact that I am on way too many drugs to recuperate from any type of surgery.  Sometimes I wish I was in the Star Trek era when they could give me a pill to fix all my ailments!  But alas, I can’t ask Scotty to “Beam me up!”

I hope y’all have a great week.  I’m sure mine will be interesting!

 

Those of you that are my friends on Facebook – thank you for your prayers last night.  I had already taken a pain pill around 6pm, but it wasn’t working at 8:30-ish.  My knees hurt while moving my legs (bending or straightening), then my feet felt like there were horns on the bottom which hurt while laying down or if I stood up.  Plus my hands were stiff & sore and my forearms felt like someone was giving me Indian Burns.  Remember those?  Yeah, I was one of those kids that would get them from other kids when I was in school!

I couldn’t sleep as I was whimpering and wincing.  To keep from taking another pain pill, I asked for prayer.  They were answered as everything that hurt,  eased up and I finally went to sleep.  It was a deep sleep and I didn’t wake until 9-ish this morning.  So again, thank you all that prayed.  I truly appreciate it!!

I did my speech last Wednesday morning and it turned out better than I had expected.  I had everyone’s attention and it intrigued the audience to hear more.  LOL … as one of my childhood friends always told me, I should write a book on my life.  HAH … It would be an adventure.

Hubby just left for church as he serves on the Safety Team.  He won’t return until after 9pm tonight.  So, I guess, I’ll try watching NCIS.  I say try, because I always fall asleep.  It’s a good thing it’s DVR’d.

Y’all have a good rest of the week.  You know what day it is tomorrow!!!   Hump Day!!!   Love that commercial!!

 

Dog, Yard & X-rays

We’ve been dog sitting a Cocker Spaniel this past week.  His mom and dad come home sometime on Saturday and they’ll pick him up on Sunday.  I’ve really enjoyed having this dog around.  He is such a good boy and so loving.   Hubby just told the dog that he can’t tell his parents what we let him do.  LOL, yes, we’ve spoiled him.  Hopefully he’ll adjust to being home quickly.

One of our friend’s son needed extra money to get his phone fixed.  We had him over to rake the back yard as neither hubby nor I can do the yard.  It’s difficult with his messed up tendons in his elbow and my ridiculous disease.  He did a great job!!!

I’ve written my speech and now I need to memorize it.  It didn’t turn out like I thought it would, but I think it will be interesting.

I know my hubby tries to be supportive in all that I’m going through, but sometimes things get a little too overwhelming for him.  The other day his anger and frustration about not being able to fix it came out.  I feel bad as neither of us can do anything about it, just wait and see what’s next that the doc has to treat.  I now have to get X-rays on both knees.  It is never a dull moment in my world.

I’ve found a Vegan Blog with yummy sounding desserts, well yeah, it also had food, but I miss desserts!!  I got onto this blog because last night I had Kung Pao Tofu at the Chinese restaurant in town.  It’s now my new favorite thing to order there.  So I was trying to find recipes to make it at home.  I’m really missing  my sweets.

Anyway, thought I’d stop in and hear myself talk!  Y’all have a great weekend!!!

 

 

Systemic Scleroderma

Last Thursday, I asked the Rhuemy doc, “How do you know when this is no longer localized Sclerodermaa?”  So he say, “When it starts going beyond your hands and feet.”  Then he took a look and it is going beyond my hands and feet.  He feels I have the Systemic form of Scleroderma.

“Systemic Scleroderma can appear in three different ways:

  • Limited (often referred to as CREST.)
  • Diffuse
  • Scleroderma sine sclerosis

The limited is often referred to as CREST, which stands for:

  • Calcinosis:  Calcium deposits in the soft tissue of the skin.
  • Raynaud’s Phenomenion:  Most commonly seen in the hands, this is a condition in which the small blood vessels contract in response to cold or anxiety.  The fingertips usually turn white, blue, and/or red and often become numb.
  • Esophageal dysfunction: This is an impaired function of the esophagus.
  • Sclerodactyly:  Thick and tight skin on fingers due to excess collagen.
  • Telangiectasias:  Found on the face & hands, small red spots.

Diffuse – typically the onset is much more rapid in limited (CREST).  Thickening occurs more rapidly and includes more areas of the body.

Scleroderma sine sclerosis – resembles the above including organ involvement.  However, the main difference is that this type of scleroderma does not affect the skin.”

Not sure which is the worst of these, but time will tell which of these that I have.

Something I refuse to do, is let this disease steal my joy.  I refuse to let the pain of this disease steal my hope.

I am frustrated, mad, sad, and all the emotions that go along with receiving the news, but I refuse to give up!!  I did have 4 days of stress eating of all the wrong things.  I definitely felt it, as my hands and feet are reminding me what a stupid decision that was!!

My sister in Vegas reminded me, our sister that died from this, survived only 7 years.  I have way too many things to see and do to put any type of limit on myself.  So, I have my boxing gloves on and I’m gonna fight!

I know I had 4 days of eating anything I wanted, but today, I’m back on my Vegan diet.  I know my taste buds have changed, as most of the things I had, did not taste as good as I remember.  So, that’s a huge plus!!