Wednesday, December 28, 2011

Christmas is behind us and New Years is on the way.

I got through Christmas and we had a nice day.

We are planning our annual New Years trip to Florida tomorrow. We will spend some time at Regina's and see Jason as well as 5 of our grandkids. We will stop by Della and Clark's and then to Rick's moms. Donna is actually going to sing at their New Years Eve Service!
UPDATE:  She was not able to sing, she is getting vry congested and coughing.  She can not go to church...


On my Lupus I have been having very painful nights. Alot of it is my arms and my hands actually feel like they are on fire they feel so hot. Yesterday I had extreme knee pain in both knees but it was all gone today...

One day at a time....

Monday, December 5, 2011

I have to trust....

Confusing, frustrating, annoying......Dr says I have Fibromyalgia too.....she gave me a pamphlet on it and I see that it is not unusual to have Lupus then to be diagnosed with Fibromyalgia afterwards but NOT vise versa......Both are similar in symptoms, it is not unusual for Lupus patients to have Fibromyalgia.....I just don't want to have either....denial is what I want....frustrated is what I feel......

Night time pain and numbing, tingling pain in both legs both arms all night or anytime I am still for a period of time was my biggest concern to talk to her about when I went in today and the not sleeping well.....those were 2 big clues to her...I guess...this led to changing 2 meds I have been on for 2+ years....that makes me nervous but I guess if I am going to go to this Rhemotologist that I have to trust her, believe her and do what she says...... Ugh!!!

Lord help me to listen, trust and be patient....

2 Cor. 1:7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

Saturday, December 3, 2011

I anxiously await to see what will the next step is....

On Monday December 5th I have my follow up with my Rheumotologist. This will be the first time I have seen her since my Lupus diagnoses. I have had to call her 3 times due to side effects of the medication I am on. Plaquenil causes stomach issues and I have had to cut back to half the medication that she originally prescribed due to the side effects. I also have had to start a new prescription for the side effects...

So I anxiously await to see what will the next step is....the daytime pain is MUCH better, nighttime is same or worse...joint pain..both arms and legs. I am still on a muscle relaxer and an anti-inflammatory that she had said she wants to wean me off of and increase plaquenil.

Other things that have been ah ha moments since my diagnoses is the butterfly rash on my chest and that my primary dr thinks previous lung issues could of been Lupus before we knew I had it....all said I anxiously await my 11:30 appointment.

I'm Thankful and I'm Blessed

I got family everywhere but here..both daughters are in New York City for long weekend. My son in Corpus flys everyday (US Navy Pilot), other son is hunting with Rick for long weekend at hunting lease in our camper....I am here alone. No plans..I can do what I like when I like or do nothing....I have a couple Christmas cooking craft ideas I may do. I can always clean the house...or go shopping but right now here I sit with my iPad curled up in my pjs with a Christmas Movie on...I can do that all day if I want to too.....I think I would rather be in NYC but since I'm not...I'll be thankful I'm blessed and get on with my day.

Saturday, November 26, 2011

Thanksgiving Trip to Florida and Marley's First Trip To The Beach

Thanksgiving Trip to Florida and Marley's First Trip To The Beach

We went to Florida for Thanksgiving. Spent Thanksgiving with Ricks family. His mom is doing really good considering.

Saturday we were going to go to my sisters house but her and her husband were sick so we decide to go to the beach....

On the way to Crescent Beach we stopped in Palatka to walk down the long dock where 2 of my brothers ashes were put.

When we started to get out of the car we realized we forgot Marleys leash. We left her in the car and walked and took pictures.

Then we had to stop at a dollar general (only thing we came across) to get a leash and I bought the only one they had. It was $3....

So we go on about our trip, windows down, beach on the horizon when I heard a flapping noise and turned around just in time to see Ricks church shirt fly out the window.....I start yelling... He pulls over and runs back while 3-4 cars run over his shirt....(well now at least it won't need ironing) ..As he gets back into the car he says under his breath... "I am still wearing it to church tomorrow"....so on to the beach.

It's a beautiful day maybe 72 degrees sunny. Marley (and us) get our feet wet just about the time she sees a sea gull. Snap goes the $3 leash and off goes Marley. She didn't go far and we were able to tie her to the leash so she could still get in the water (leash law).


Rick and I both ended up getting our jeans wet all the way up to the crotch. Got some great pictures and video and enough sun so we headed out.

Found a great "hole in the wall" Seafood Restaurant for a delicious fresh flounder sandwich.

All in all it was a fun trip and we made some great memories and a list of how to be more prepared the next time we go to the beach....

Tuesday, November 22, 2011

There Will Always Be A First.....

But there will only be one last....

Rubbermaid tub full of journals...dating back 11 years consecutively and others dated farther off.....I searched through trying to find the last one... I found it...May 2011. In the front you wrote " this is a very big journal that Darlene bought me...I wonder if I will be around long enough to finish it"....you got to May 3rd no writings after that..... The 8th was Mothers Day, the last time we visited you at home...the last time....

You fell on the 9th...

There will always be a first....
A first time I drive by your house...
My first birthday......your first birthday.....
The anniversary of when You fell...your surgery anniversary........the anniversary of when God took you home...
The first thanksgiving...the first Christmas..all without you....

There will never be another last...last visit..last time I sat by your bed..last time I held your hand... Last time I told you I love you...

I miss you mom...

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  (2 Corinthians 12:9)

I lift up my eyes to the hills—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.  (Psalm 121:1-2)

Monday, November 14, 2011

Could it of been a flare up before I even knew I had Lupus?

Today I had to go to my primary Dr because I am congested and coughing with sore throat and not feeling well..... This is the first time I have seen her since she suspected Lupus and sent me to the Rhemotologist.

She made a comment that the past issues I have had with my lungs could very well of been flare ups from Lupus before I even knew I had it...

I had gone to the ER with chest pains last year and a Dr questioned my lung X-ray. Told me to have a follow up. When I did there was still no changes..there was a dark area on one of the lungs that appeared to be partially deflated...

Today the Dr told me to be careful of this upper respiratory as it could turn to pneumonia easily. Also that once I get past this that she will want me to get a follow up chest X-ray to see how it looks now that we know I have Lupus...

Sunday, November 13, 2011

One little blue eraser....

One little blue eraser...the kind that fits on a pencil....

I have been wanting to get my car back in the garage..it has been full of stuff, moms stuff, things left over from the garage sale..not things I necessarily want but things at that point I could not sale...could not throw away...

My hubby was trying to get it all organized, put away, thrown away.. My car has been sitting outside the garage since the 1st of August, getting bombarded by acorns...more acorns than our trees have put out in all the 14 years we have lived here...

I wasn't feeling well so I was sitting there watching him break down boxes...and one little blue eraser fell out...he didn't reach to get it...and as I stared at it..it just reminded me about my mom...she would of went for it. Reached for it...she loved, drawing, writing, painting...she would of wanted it...

For us, it was not important..until I saw it..and my heart ached..over one little blue eraser, that I now will cherish...for mom..because it fell out of a box and into my heart...one little blue eraser...

I miss you mom..I love you mom....

Friday, November 11, 2011

I hope that this helps you understand me.

I have had good days and bad days health wise over the last month. More good than bad. I continue to educate myself and prepare myself for flare ups. This week I found an article that helps me to feel better about how I am feeling. For instance today I have been exhausted...I wanted to go to the Dr but I couldn't really put my finger on why... I am just tired...too tired to even talk...maybe this article can better explain.


********************************************************************************************

This disease is called Lupus for a reason. Lupus, like the wolf it is named for, is a disease as allusive, hard to capture, and almost impossible to tame as the wolf!


 My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulders, but tomorrow it may be in my hips or gone. My pain is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't get out of bed today, it isn't because I don't want to. I am, most likely, paying the price for pushing myself beyond my capability.

My forgetfulness - Those of us who suffer from it call it brain fog. I may not always remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me.

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I have not experienced all of this but some I have and it helps me to know that I indeed have reasons for what I am feeling.

Saturday, November 5, 2011

A loaf of sun-maid raisin bread brought me to tears in Walmart....

A loaf of sun-maid raisin bread brought me to tears in Walmart...the thought of going to Olive Garden makes me cry.......I want to be strong but ....I am tired and scared and weak....there I said it...... I have never celebrated a birthday without my mother.....How do you do that?

I know I have a Father who formed me in my Mother's womb and since I was borne 57 years ago my life has been in His hands. (My baby pic)

It is through God's strength and prayer that I have gotten through the last few months. I pray God will let me see all the blessings that surround me tomorrow. I have so much to be thankful for and I am blessed with a Godly husband, 4 wonderful children and 13 amazing grandchildren. I have a sister and brother although far away I love very much. I have so much to be thankful for.


Lord let me see through your eyes tomorrow and feel your strength. I know my mom and dad will be looking down on me and I want to make them proud.

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them...
Isaiah 42:16

Thursday, November 3, 2011

Imagination or Denial

I have a Butterfly on my chest. The last 3 mornings I realized it but it's not new to me .I see it every time I get out of the shower or out of the pool in the summer...just never put it together..... I am educating myself and now I am realizing things and am putting things together that I would not have normally known prior to my diagnosis.....

It was just a dream.....

I had dreams about my mom the last few nights... When I awake I am shoving them out of my mind....I cant think about her.....it's too hard... I don't want to think about my dreams...don't want to talk about it....


Now..... I want to remember but I can't.... it was so real at the time, but now I can not will the memories back into my mind...I should of blogged it. Wrote it down....I will from now on....

Saturday, October 29, 2011

Footloose

Got myself all geared up and mopped kitchen and steamed cleaned the living room and dining room. Showered and picked up Hope and Isabella at noon. Stevie B's pizza buffet for lunch and pumpkin pizza for dessert. On to the movies to see Footloose complete with popcorn and Reese's....Story line was good, music was great, Julianna was great but the language was not....ugh!!! Dropped the girls off so their mom could take them to their neewollah at church ( Halloween backwards).

During the movie my arms were killing me...They go to sleep and have that numb tingling feeling...I hate it...one of the worst symptoms so far and it is far worse at night...every night..if I am not moving them...they do it....

Off to Walmart to do some light shopping...zaxbys to go and home to put the house back together. Clean floors, new bed for Marley and now I rest. Great day.

Thursday, October 27, 2011

What an eye opening experience!

The medication I am on for my Lupus is called Plaquenil. According to my Rheumotologist I have to have my eyes checked every 6 months to be sure the medication does not effect my eye sight...a side effect.....

I am typing this with contacts in my eyes !!!!! Now if you know me, you are shocked right now...I do not like the idea of anything in my eyes....BUT I couldn't see the glasses frames I was trying on.  My Eye Dr. had to numb my eyes for a test and he said "lets just put in contacts so you can pick out your frames"...he said I wouldn't even feel them go in.. I am NOT a contact person...the whole idea just turned me off....But he insisted I would probably enjoy them...He said, "Let's just do it" and we did.....and he was right.....

What an eye opening experience!
It was unbelievable seeing through contacts.......I was amazed.

But then it was time to take them out and that was a whole different story...he could not get them out...after 3 tries him grabbing at them... me blinking...twitching...he had to put numbing drops back in my eyes again to get them out.

I think he was getting nervous because as he was trying one last time to grab them out and he said, "It's a good thing you don't want contacts!!!"
And although it was an enlightening experience it is not one I will ever choose to do again :)

So glad we don't need glasses or contacts to see our Lord. He is always there. He sees our every move, hears our every prayer.


Reminds me of one of my favorite songs:
I have a maker He formed my heart Before even time began My life was in his hands
He knows my name He knows my every thought He sees each tear that falls And hears me when I call.I have a Father He calls me his own He'll never leave me No matter where I go He knows my name He knows my every thought He sees each tear that falls And hears me when I call.

Friday, October 21, 2011

In His power not ours...

I can't tell any difference in my Lupus symptoms. I don't know if the medication is even working (3 weeks in) it's a disturbing drug when I research it but I have faith that in my weakness He is strong. Sometimes we take leaps of faith when we are full aware we are doing it not caring the results just wanting the quick satisfaction of an expensive toy, a new home, a high on weakness....this came to mind as I was driving the T-Rex (4wheeler) I had Marley in the back as always and I was going pretty fast.....ahead I see a squirrel and as I brake I look over my shoulder just in time to see a white blur flying through the air...yes, she saw it too....so in a fleeting moment she chose to take chase....not giving thought to the results of her choice....as she picks herself up I am reminded how thankful I am God gave me the wisdom to make wise choices.... In His power not ours...


2 Corinthians 12:9 But he said to me, "My grace is enough for you, for my power is made perfect in weakness." So then, I will boast most gladly about my weaknesses, so that the power of Christ may reside in me.

Tuesday, October 18, 2011

As We Drive Through The Mountaintops

It is a beautiful day for a fall drive. The sun skips and plays off the dazzling colors of the trees as we cruise down the Blue Ridge Parkway.  It backlights the trees enhancing the yellow, orange, and red of the leaves. Peak weekend. A trip we have been anticipating all year...but who ever thought that Rick's sister Lisa would be laying in a hospital in Texas with cancer....Lord as we look at this weekend and back at this year we see the mountaintops and the valleys. We see you in all of them. We praise you through it all knowing its in the valleys we grow......as we drive through the mountain tops......

Luke 3:5-6 Every valley will be filled, and every mountain and hill will be brought low, and the crooked will be made straight, and the rough ways will be made smooth, and all humanity will see the salvation of God.'"

Wednesday, October 12, 2011

There is no Denying That

Over the last few months I have struggled with denial. Denying my mom is really dead...denying I hear God telling me its ok...denying I am worshipping in the right place..the devil can really feed you some lines.....denying I really have Lupus.....other people get this...not me... Denying a true friend would really let me down and not care...she wouldn't do that .......life is full of unexpected storms..ups and downs...seasons....trials....let downs....But God is always there holding my hand. There is no denying that!! Because without Him I would not survive these storms...a wise man once said, " you are either getting ready to go into a storm, coming out of a storm or you are in a storm". How true.

Thankful for His perfect strength during this time.

Ephesians 1:19 And what is the incomparable greatness of his power toward us who believe, as displayed in the exercise of his immense strength.

Impatience is not a Virtue

I hate to wait....on vacation, weekends, Christmas, paydays, anticipated purchases, visitors, camping trips, test results...I guess I should say I am impatient... I am so glad God is not impatient with me....to forgive, to ask for forgiveness, forgetting my daily walk, for not sharing my salvation, repeating my besetting sin...over and over...Lord help me to be more patient in all things....and remember you in all things...

In all your ways acknowledge him and he shall direct thy path. Proverbs 3:5

Saturday, October 8, 2011

Where Does The Time Go?

October is my favorite time of year. The windows are open at night with the cool autumn breeze blowing over us. Pumpkin bread, pumpkin muffins, just pumpkins in general and fall decor. October always gives us the itch to camp so we look forward to our annual camping trip to the North Carolina Mountains. This year we will go without the concerns of leaving my mom behind...but with leaving Rick's mom behind...She is a part of this annual trip...our tradition has gone on for near 20 years....but this season of our life has seen many changes.....my mom has gone on to be with The Lord, Ricks mom is preparing to go....this season of life makes us appreciate each day, each minute, each breath...live in the moment don't let even a single moment pass without telling those you love just how much they mean to you...just yesterday I was raising my little boy and girl...today...they are raising my grandchildren...oh where does the time go...

Friday, October 7, 2011

It's Very Noisy At My House...AND I AM ALONE......

It's very noisy in my house and I am alone....the clambering and commotion on our roof  is keeping me from my rest...I venture outside with dog in tow to see what all the noise is about...no it's not Santa...It's several squirrels on our roof..as I stood staring at these rodents the hairs on my arms stand at attention.....my hubby is off to Florida to visit his mom and I stayed home to rest and pack for our upcoming camping trip...there is no rest for me with all this commotion..........as I squeal and jump about hoping to scare them off the fear of one rolling off the roof and landing on me scares me to the safety of my home......Is that how God feels when we are out of his will?  No rest for Him as we clammer about......as He waits for us to run to the safety of His arms.......
 
Hebrews 4:10 For he that is entered into his rest, he also hath ceased from his own works, as God did from His.
 

Thursday, October 6, 2011

That Is Enough....

I really need to talk to my mom…. I need to tell her I have Lupus…but I can’t…She died 2 1/2 months ago… I miss her… She would be praying for me…But she would be worried about me too and I wouldn’t want that…So I am glad God spared her this pain… She had so much of her own.  When our kids hurt we hurt.  That is the worse pain there is… So  I thank The Lord for family and Godly friends that are lifting me up in prayer.  His power, His grace and His faithfulness are with me and that is enough….

Wednesday, October 5, 2011

Purple Butterflies

Last night I dreamed my hubby and I came upon hundreds of beautiful purple butterflies. He was picking them up by the double handfuls and putting them all over my body. When I woke up from this very real dream I realized the Purple Butterflies were a symbol of a word I was researching the night before... Lupus...An unfamiliar word to me had become all to real...I was diagnosed on Monday October 3,2011 by Dr Geetha Jonnala.