March 15, 2016

I’ve been a little sad these past couple of days. Hubby and I had a fight on Sunday.  I wanted to go to church without him.  I can still drive, but for some reason he doesn’t think I’m able.  The reason I wanted to go by myself, well, he can be kind of a jerk when we go to a new church.  I didn’t want to put up with his attitude and I really wanted some time alone without having to worry about what he’s thinking, doing, or whatever.

I had told him the night before that I was going to try and go to church on Sunday.  He asked where, and I told him, and that was the end of it.  On Sunday as I’m getting dressed, he jumps out of bed and gets all mad that I didn’t say anything about going.  I told him that I was going to drive and he jumped all over that and said, “No, I’m not going to let you kill yourself!”  Really??!!  Where in the heck did that come from??  I have NO plans for that, but it really bothered me that he would say such a thing.  Then he says, “What do I tell our son, if something happens?”  Again, Really??!!  *Sigh*  Needless to say, we went to church.  I hate walking on eggshells as I’ve done that most of our married life!

No, I’ve not brought it up again for fear of what may come out of my mouth.  I’m hurt and sad that he would think such things.  All I wanted to do was worship God and be in His presence in His house.

Today on Facebook, this was in my feed, “Whenever you feel unloved, unimportant or insecure, remember to whom you belong.”  Ephesians 2:9

It’s so comforting that He lets me know that He sees and knows what I’m going through.  I can’t get through my life with my disease without Him.  I just wish my hubby could understand that.

February 26, 2016

Oh, it looked so close!!  The PCH prize patrol looked like they were in the Midwest where hogs, corn & soybeans were the state’s commodity.  It was promising until the next clue was, the winner does NOT live in the capital of his or her state.  LOL, well that takes me out!!  Bummer … $5,000 a week.  What would you do with that???

It’s been awhile since I’ve played the computer keyboard.  I may hunt and peck on the tablet or phone, but to actually be typing, well, not so much.  Main reason is that I hit the wrong keys while typing.  Not because I don’t know how, as I could, at one point, type 70+ words per minute, but, my hand doesn’t stretch that little bit to reach the next key, just out of the position.  It also may not help that my hands are sitting at an angle.

I’ve been a bit on the blah side.  I’m not sure if I’ve lost my purpose of why I’m here on this earth or if I’m frustrated at the realization of what my body is going through and further realization that I have this f)*&%%g disease!  The anger part is sitting just under the skin and can erupt without too much provocation.  Unfortunately, it’s at hubby.  Sometimes he deserves it, sometimes he doesn’t.  Yes, I do drop F Bombs when I’m angry.  The sailor in me comes out and I wasn’t even in the Navy!!

This month is our annual physical month.  Hubby’s had to do his tests and now I have to do mine.  I’m not happy about the camera up the bum.  The doc wanted to know why I didn’t do it last year.   I told him that I was poked and prodded enough last year, that I refused to go.  So, I guess I’ll have to go this year.  Then I’ll be good for another 10 years … well on that test anyway.

I also have to get a mammogram.  Ugh, my records are in Nevada, so they will have to contact them to get those so they can be compared.  The doc showed hubby how to do my monthly breast exam.  My hands don’t flatten out, so I cannot properly do one (not that I ever did before).  LOL, I was changing shirts and hubby looked at me and said, “Is it time for a breast exam again?”  That cracked me up!

This getting old sh*t is getting, well, old!!  Tests, exams, medications, why in the world did I want to be older when I was a kid?!?!  Oh wait, my youth wasn’t that great.  It was sprinkled with little bits of greatness followed by fear, disappointment, & sadness.

Don’t get me wrong, I LOVE being near 3 of our grandchildren and seeing them every week.  They take away my blues and blahs, but when I’m not with them, I sit in this apartment watching the tele as my brain starts to lose it’s knowledge.  I’m not alone, as it is happening to hubby too.  I know we need to figure out what to do to keep us going, but sometimes, that seems a bit too much like work!  I did get to drive the other day as he was still loopy from his medical test.  It was quite fun and I should do that more often.  I’ll have to make small jaunts here and there, just so that I can feel a little more free.  The walls start to close in on me and it doesn’t help that winter was upon us.  Today is a beautiful day and I’m inside, marinating chicken wings to make fried Adobo wings.  It sounded good to me.  Not sure what I’m making with them, as I’m not as creative as my son.

Tomorrow morning, we are taking our grandson to his ice hockey tournament.  His team is 1st in his league, so he doesn’t have to be there until 10am.  I am excited to go and watch them play.  Near the ice rink is a store called Kolache Factory.  OMGosh … my son took me there last weekend, it was quite good and I look forward to stopping there tomorrow!!    So that’s my looking forward thing for this weekend.  I need to create more looking forward things each week, so I can get out of my rut.

Here’s hoping you all have a great weekend and thanks for stopping by my little blog!!

January 15, 2016

I’ve recently said to a friend that I accept and love her for who she is, the good, the bad & the ugly.  This got me to thinking, that she is more family to  me than a friend.  Which then got me thinking, what are the definitions of each?

Well, according to Merriam-Webster, these are the definitions:

Family:  A group of people who are related to each other

Friend:  One attached to each other by affection or esteem

I got to thinking, isn’t that supposed to be what is a family, attached to each other by affection or esteem?  I thought Merriam-Webster had them switched.  However, reading and hearing the news, people are demonstrating that they are just a group of people who are related to each other.  They lack the affection and esteem toward one another.  That thought made me sad.  My parents taught us that we are family through thick  and thin and that we are to love and respect each of our siblings as sometimes they may be all you have.

As I described my friend above, the actual definition of friend applies.  I think there should be a word in between that describes a friend that is more like family … Framily?  Famiend?  Familfriend?   LOL … I don’t know, but a combination of both.  I suppose Friend will do for now, if I go with the Merriam-Webster definition.  But she is family, as the saying goes, a sister from another mister!!

I am blessed to have family that are friends as well as friends who are family.  I wouldn’t have it any other way.  I just hope I can pass that on to my next generation.

 

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.

 

 

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!!!

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!

 

Melt Down

Yes, I finally melted down last Saturday night.  I was thinking of my longevity and started feeling unloved & unappreciated as I thought about my children and how they haven’t visited in a long time.  One did visit in March, but it was on the way to a funeral.  We did get to keep 2 of the 3 grandchildren overnight, which was great fun!!  With talk of returning sometime this summer, my hopes were dashed as summer is now over and the school year has started.

So, yeah, all the self-talk going on in my head just became too overwhelming and I lost it.  Hubby was so great at just holding me as I cried.  The next morning, he stayed home with me as I continue to cry uncontrollably.

I know my kids have their lives, which we’ve always told them that their immediate family (spouse & children) come first before anyone else, but one would hope all or any of them would visit more often.

As much as my husband was supportive, my son was just as much, with his words of encouragement and support.  He’s always been the one child that lets me into his life, whether good or bad.  It’s not favoritism, however, he is the farthest away, yet, he’s the closest, as he calls more often.

We’ve taught our children to be independent … It sucks that we did too good of a job!!