To The Dawgs!

Not the best picture in the world, but this is our Gentleman Jake.  He wasn't having much fun this day.  He was chained in the front yard while my son was mowing the back.  I hope to get some better pictures of the animals soon.

Jake was on my mind today.  I was up and down last night unable to sleep and he was whining because he could hear me and wanted company.  I have not felt well and He has been a bit neglected lately.  I have not been able to go outside as much and lavish him with love and good skritches.

Huh?

Well I was back in the ER Friday night.  I had felt blah all week and Friday was pretty bad, but I had been working longer hours due to training.  So I thought I was just overtired ... boy I wish.

By the time I got home I was hurting so bad that I was vomiting in the front yard.  My son ran inside to get my S/O.  He took me to the ER and sat with me through the night.  I know some people who have passed kidney stones with little pain ... I'm jealous!

For me, both times the pain has been worse than any labor pains could think to be. I don't like to fall apart in front of others, but these boogers made me do it.

They finally released me in the wee hours of Saturday morning.  Why no I don't remember the time, they had just given me a double dose of pain meds. 

Whhheeeeeeeeeeeee!

The CRT or whatever showed that the stone was almost through it's course, so they pumped me full of pain and nausea meds and sent me home.  It was the first time I hadn't hurt since 6 pm including with the pain meds.  Needless to say I was exhausted and passed out when I got home.

When I woke up later I felt no pain, but was very tired and dehydrated.  I took it easy the rest of the weekend and tried to drink lots of fluids.  Sunday when I woke up all my muscles around my rib cage and back hurt due to all the vomiting.

They still hurt today.

I'm back at work, but boy did I want just one more day of taking it easy.

Loss

I read the following poem at Curse Of The Invisible Illness and it resonated.  I thought I would share it with you today.

After a While

by Veronica Shoftsall

After a while you learn the subtle difference between holding a hand and chaining a soul.

And you learn that love doesn't mean leaning, and company doesn't mean security.

And you begin to learn that kisses aren't contracts, and presents aren't promises.

And you begin to accept your defeats with your head up and your eyes ahead, with the grace of a woman, not the grief of a child.

And you learn to build all your roads on today because tomorrow's ground is too uncertain for plans, and futures have a way of falling down in mid-flight.

After a while you learn that even sunshine burns if you get too much.

So you plant your own garden and decorate your own soul, instead of waiting for someone to bring you flowers.

And you learn that you really can endure;

You really are strong, you really do have worth;

And you learn, and you learn

With every goodbye you learn.

I'm a Grinch

I don't know about you, but I thought I was doing good with the Christmas spirit this year.  But it seems that Grinchness has swallowed me whole.  I've been a gripey, grumpy, mean ole heifer this week and I can't see to claw my way clear of this funk.

We have had big changes this year at my job, that will be culminating the first quarter of next year and anxiety is getting to me.  There are some family financial issues that I need to stop procrastinating on and just find the time to do it.  I also have been having some medical issues that I keep pushing aside to take care of everyone else.

It's time to try and destress this coming weekend, get my thoughts together, make a plan of action and then DO IT.

If I survive my Grinchness.

Or my co-workers and family do.

I need a Nap

Tired, I'm just so tired. 

This is the first year in quite a few years that I am in the "Holiday Spirit."  But the Holiday season is busy and cram packed full of things to do.  Of course, I always try to do too much.  Last week I just kept going and going, like I thought I was the Energizer bunny or something; until my body finally slammed me to a HALT and said no more.

Yep it caught up to me and I stayed horizontal most of Saturday, Sunday and Monday.  Then Tuesday night I had to keep Dad up til midnight, then wake him back up at 3 a.m.  Dad needed to be sleep deprived for his EEG test on Wednesday morning, so guess who else was sleep deprived. 

Uh Huh, that would be ME. 

So after running myself to the point of exhaustion shutdown and then participating in the sleep deprivation, I'm in a "flare" revival. 

Everything and I do mean everything has flared. 

Digestive system,
fibro,
sjorgrens ...

it ain't pretty people. 

I still have a few gifts to get for Christmas and I'm trying to spread it out over the next week to conserve energy.  I don't think I'm going to get everything done, especially the decorating, because...

while my house is not decorated, my work cubicle is.

Thankful

The week before last, one of my Aunt's passed away from lung cancer.  I was not fortunate enough to have spent much time with her and her family, but what I remember about her is her kindness.  Other than my Mom, she was one of the kindest people I've ever known.  I grieve for and with her three sons and many grandchildren and family.  She will be greatly missed.

Thanksgiving was a very thought provoking day as all the things in my life that I am grateful for ran through my brain.  I'm thankful that I've been here to see my son grow up.  He will be 20 this weekend and I love him and am proud of him.  I'm thankful for my family, friends and that my health is not as bad as it could be.

I pray that all of you have many things to be thankful for and that this next year brings many blessings into your life.

Love and Big Hugs,

Hallelujah!  It appears that the stone has passed.  When and where I do not know, but hallelujah it is gone.  I hope that this post finds everyone doing well.  At this point in time me and mine are doing pretty dang well.

Hugs,
Karen

Stones

The urologist says that I have to have an ultrasound done of my kidney, urethra (sp?) and bladder.  He also said that I need to pass the stone soon as the kidney can only be blocked from the bladder for so long without causing damage.  O_O  Really ... really, really?  DUH!

So I'm at work, with the kidney stone setting in my urethra tube causing chaos.  I'm drinking enough water to sail a ship and it's still not moving.

Here I am, still with a kidney stone ... and I'm quietly going crazy.  Even when the pain is not intense, it's like I'm walking around in a constant brain fog.  Not to mention that it's taken me the last two weeks to get my "flares' back under control. 

The hospital did not have half my meds and gave me some others that made me worse.  So really by the time I left not only did I still have the frackin kidney stone, but my gastric paresis was in full swing, my blood pressure was up, my sugar was out of whack, and I hurt everywhere, not just with the stone.

OK enough complaining.  When I got to work this morning a friend had left me this funny.  It made me smile, which I sorely needed, so I'm sharing.

Middle Age Texting Codes

ATD - at the doctor
BFF - best friend fell
BTW - bring the wheelchair
BYOT - bring your own teeth
GGPBL - gotta go, pacemaker battery low
GHA - got heartburn again
IMHO - is my hearing aid on?
LMDO - laughing my dentures out
OMMR - on my massage recliner
ROFLACGU - rolling on floor laughing and can't get up
TTYL - talk to you louder

and my personal favorite ...

FWIW - forgot where I was.

Have a wonderful weekend!

Kidney Stone

Need I say more?  Really?  Well ok...

Friday, Oct 7th I woke up with a radiating pain in my abdomen.  With all the digestive and other medical issues I have, I didn't think much of it.  I took some pain meds, got ready and D and I headed into work.  I was driving that morning and on the hour drive in, it was getting worse and worse.  As we got close to my job, D suggested that I just pull into the ER.  I said no, it will get better, you go on to school and if it keeps hurting I'll let you know and you can pick me up early when you get out of school.

Two hours later D told me "I told you so Mom."  As the pain steadily increased I became nauseous and then became a permanent fixture in the restroom.  A friend and co-worker agreed to take me to the local ER and off we went.  As I was triaged and waiting to go in the back I told her to go on back to work I was fine.  Uh huh, right.

When they called me into the back and started poking and prodding on my abdomen, it got worse.  It steadily increased until I wasn't sure if I could hold still and be quiet any longer.  I've seen those ER shows on TV where the person in pain is sort of thrashing around, crying and begging ... that was almost me ... SERIOUSLY.  I was that close and then my blessed nurse injected pain meds into my IV.  It didn't knock me out or make the pain completely go away but it was bearable.

Honestly peeps, I have NEVER had anything hurt this bad besides labor ... NEVER.

Anyway, I was admitted and they kept an eye on me til late afternoon Sunday, when they released me to go home.  I saw a urologist and because I do not have any infection (no fever), I'm having no nausea and the pain has never reached that intensity again they want me to wait ... wait and see if it will pass. O_o

I was out all last week because I don't do well with strong pain meds and mine were fairly strong.  There is no way I could concentrate on work, not even to do anything from home.  Friday, I started halving the meds and was able to do some work.  I was planning on going in this morning, but all last night I alternated between freezing cold and sweating.  No fever though, how strange.  It finally eased up and I was able to rest.  

So now I'm aiming for tomorrow.  I hope to be at work at least for most of the day.  I have followup visits and a cardiology visit this week.  I hate it when I'm feeling pretty good, weather is beautiful, life is good ... and then WHAM upside the head!

I hope and pray that you are all doing well and I hope that I will be soon.

Update

I don't have much time today as I am swamped at work, but wanted to post a couple of updates.

1.  First of all we finally received all the paperwork on the 5 hour neurological testing that Dad had taken almost a month ago.  My Aunt L is coming tomorrow to take Dad into his regular doctor.  The visit is to go over the results and to start the referral process with his insurance company.  The referral will be to go see a geriatric neurologist to verify and treat the Parkinson's.  I hope that the doctor will be able to help some with the symptoms.

2.  Myrtle (my truck) only needed new battery cables and a new battery.  Not too awfully much money and WoooHooo, she's back on the road.  However my car now needs to have the plugs and cables changed out on it.  :(

3.  I'm feeling pretty good this week and the weather is wonderful.  This past weekend was beautiful, it makes me wish I had a large table outside on the porch to sit and eat supper.

I hope you are all have a good week.
Blessings.

On The List

Yesterday is fairly high on my list of worst day ever.

I think everything I have flared up in about a 6 hour window of time.  I awoke in the wee hours of the morning Thursday hurting no matter how a lay in the bed.  A hour or so later the gastric paresis crap set in and then a short time later this sparked the IBS.

I spent half of the day laying in the bed crying and the other half knocked out as a side affect of the combined meds.  J has never seen it this bad and really wanted me to go to the ER.  I've been here before and know I can just ride it out. 

Our ER's around here are so busy that it's hours and hours before you are seen.  I'd much rather be miserable, crying and in pain laying in my own bed, then in a hard plastic chair in a cold ass waiting room.  There's really not that much the doctors could do that I don't have meds for myself ... so I stayed home.

J?  He went outside to fiddle around with different projects because he can't stand to see me cry.  He asked me to text him or send my son out to get him if I changed my mind about going in.  Sweet Man, I love you.

Every time I was awake I was worrying about my job.  I'm in accounting and the end of the month is massive deadlines for us.  My wonderful boss got me a short reprieve for my 5 p.m. deadline that evening, until noon today. 

Yes I'm at work today.

Tired, foggy brained, still in some pain ... but here.

I really hope I feel much better this weekend.  The weekend here is supposed to be absolutely beautiful and I would like to be able to enjoy it as much as possible.

I hope you all have a wonderfully blessed weekend!

Where did the week go?

This week has just drug by for me.  Most likely because I've been recuperating from going to the family reunion last Saturday.  My days this week have consisted of:

Drag my butt out of bed and walk "ouch ... OUCH" to the bathroom.
After taking twice as long as normal to get ready, leave for work.
Realize I haven't taken meds and go back inside house
Go back out to car and head for work
(An hour later), sit in parking garage for 5 minutes wishing I didn't have to get up and go inside.
Go to break room for caffeine fix
Stare bleary eyed at monitors (have two) and try valiantly to complete necessary tasks efficiently.
Go to break room for caffeine fix
Catch myself staring off into space instead of working.
Go to break room for caffeine fix
Look at time for 4,000th time today and realize it's time to go home.
Make it to car and sit thinking of long drive home
Make it home and think about supper that needs to be cooked
Get son to help me with supper
Stand over stove dreaming of my bed
Finish eating and sigh loudly, because I need to put away food and pickup kitchen
Crawl into bed and then remember I haven't taken my meds, get out and get some water
Get back in bed, double check alarm and lay there ... exhausted.

I think I'm going to be doing a whole big bunch of NOTHING this weekend.

Have a great weekend.

Invisible Illness Week

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is:  Sjogren’s Syndrome and I also have: Hypothyroidism, Diabetes, Gastroparesis, High Blood pressure, Irritable Bowel Syndrome, Fibromyalgia and Polycystic Ovarian Syndrome
2. I was diagnosed with it in the year:  2006
3. But I had symptoms since:  I was a teenager
4. The biggest adjustment I’ve had to make is:  all the medications I have to take and the exhaustion.
5. Most people assume:  That because I don’t look ill, or I’m smiling, that I’m not sick.
6. The hardest part about mornings are:   waking up and standing up from the bed (feet hurt, knees hurt, hips hurt).
7. My favorite medical TV show is:   Mystery Diagnosis!
8. A gadget I couldn’t live without is:   My soap/shampoo dispenser.  It attaches to the wall and I keep it filled up.  Showering is a big ordeal and so was opening the shampoo bottles.
9. The hardest part about nights are:   The inability to sleep well due to joint pain and other issues.
10. Each day I take __ pills & vitamins. (No comments, please) 17
11. Regarding alternative treatments I:  wish that I could afford to try some alternative treatments, such as acupuncture.                                                                                     
12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!
13. Regarding working and career:   I am still working full-time … barely.
14. People would be surprised to know:  How much pain I have sitting at my desk and how much sleep I need.
15. The hardest thing to accept about my new reality has been:  Not being able to physically do as much as I used to do (ie. Cleaning, socializing).  Coming to terms with the fact that the day is coming when I will not be able to work full-time any longer.
16. Something I never thought I could do with my illness that I did was:  remain fat fluffy (gastroparesis).
17. The commercials about my illness:   don’t exist.
18. Something I really miss doing since I was diagnosed is:   crafts, gardening, hanging out with friends.  I’m just too tired when I get home from work and the weekend is for minimal chores and resting.
19. It was really hard to have to give up:   The ability to take care of everything by myself because I had the energy to do so.
20. A new hobby I have taken up since my diagnosis is:  LOL, none.  I’ve had to give up most of my hobbies and activities.
21. If I could have one day of feeling normal again I would:  I would start off the morning outside.  Perhaps checking on my flowers.  Then I would go someplace with some friends for lunch and perhaps to a book store.  I would like to invite friends over that evening for a BBQ, good conversation and lots of fun.
22. My illness has taught me:   patience and that the important things in life are basic and do not include a spotless, pristine home.
23. Want to know a secret? One thing people say that gets under my skin is:  How come you go to the doctor so much?  Oh that’s not so bad.  Have you tried (blank)? 
24. I love it when people:   Keep me in their prayers.  Also when they really care about what is going on with me medically
25. My favorite motto, scripture, quote that gets me through tough times is:   “Be strong and courageous, do not be discouraged, for the Lord will be with you wherever you go.” Josh 9:1     
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.” ~ Maya Angelou      
26. When someone is diagnosed I’d like to tell them:   You are not alone.
27. Something that has surprised me about living with an illness is:   How much I cannot do anymore, how little people understand and the fact that they do not want to.                                                  
28. The nicest thing someone did for me when I wasn’t feeling well was:   Clean my house, tell me it was ok and gave me a hug.
29. I’m involved with Invisible Illness Week because:   I have Sjogren’s Syndrome.
30. The fact that you read this list makes me feel:   That I am not alone and that someone out there understands me.

It's a Mess

About a month ago, my Dad had a 5 hour neurological test with a Neurophsychiatrist.  At the follow-up visit she stated that I needed to get a Texas Durable Medical Power of Attorney and a Texas Durable Financial Power of Attorney completed for Dad.  She also stated that I should be able to locate the forms online for free ...


Yeah.  Right.


I have found lots of sites with lots of information, but to get the form cost $ ... that I don't have.  I'm going to keep looking, but it looks like I may have to call a local attorney that we know to see how much he would charge.  At least that way I would know that it is completed correctly.


I detest wading in the legal stuff.  It is a maze of madness.

Stand Back Up

I was way late for work today.


Way ....


I didn't get here til noon.


I hate when I'm hurting and sooo exhausted I just can't get up.  Well I did get up eventually.  I even took a shower.  It took me two hours to get ready.  Two friggin hours ... TWO.  I kept having to sit down and rest.


I'm feeling a bit pushed down


Pushed around


And all around weary


On my hour long trek to work, I popped in my Sugarland CD.  It helped.  It helped a lot when this song came on:

"Stand Back Up"

Go ahead and take your best shot,

Let'er rip, give it all you've got,

I'm laid out on the floor, but I've been here before,

I may stumble, yeah I might fall,

Only human aren't we all?

I might lose my way, but hear me when I say,

I will stand back up,

You'll know just the moment when I've had enough,

Sometimes I'm afraid, and I don't feel that tough,

But I'll stand back up,

I've been beaten up and bruised,

I've been kicked right off my shoes,

Been down on my knees more times than you'd believe,

When the darkness tries to get me,

There's a light that just won't let me.

It might take my pride, and my tears may fill my eyes,

But I'll stand back up,

I've weathered all these storms,

But I just turn them into wind, so I can fly,

What don't kill you makes you stronger,

When I take my last breath,

That's when I'll just give up,

So, go ahead and take your best shot,

Let'er rip, give it all you've got,

You might win this round but you can't keep me down,

'Cause I'll stand back up,

And you'll know just the moment when I've had enough,

Sometimes I'm afraid and I don't feel that tough,

But I'll stand back up.

Music always bolsters my mood.  I think perhaps I need to make a Mix CD of songs that help my Morale on days I'm low.  I'll call it "Fighting The Demon."

Parkinson's

Dad and I saw the specialist last Thursday and she went over all of his test results with us.  She believes that Dad has Parkinson's and said that Dad needs to go see a regular Neurologist.  She said that in some rare cases that Parkinson's can include hallucinations/dementia.  I've spent the last few days pouring over medical websites and have found mention of this in only a few places.  Parkinson's Disease Foundation says this, "cognitive issues, such as memory difficulties, slowed thinking, confusion and in some cases, dementia".

The specialist is sending her report to Dad's PCP and a copy to us.  As soon as his PCP gets the copy, we will see if we have to go in and see them first, or if they will go ahead and start working on the referral to the neurologist.  Neither Dad of I are looking forward to all the doctor visits and test, but at least we have a starting point now.

The absolutely hardest part of the entire meeting, was the doctor explaining to Dad that he is no longer considered competent to make his own financial and medical decisions.  Whew that was very emotional for both of us.  My Dad is so independent and is struggling to hang on to as much of it as possible.

So now there are some legal issues to take care of.  Actually Dad seems more at ease with that aspect of things.  What is getting his goat is that I have to watch him take his meds now.  He absolutely hates that.  He kept taking it before I got in there.  I think we may have it worked out now, at least I hope so.

Well I have lots of catchup work to get done today, so I had better stop here.  We appreciate your well wishes, blessings and prayers.

Spoon Theory

Today, I read the Spoon Theory by Christine Miserandino.  It's amazing how something simple can have such a profound affect on your life.  As I read this, I felt that I had found someone who "gets me."  What I had yet to find out is that I had found many who "get me." 

If you get the chance and have time, click the link and read the story.  So many people who are healthy do not understand what a person with a chronic illness goes through on a daily basis.  We are excellent at hiding our illness, therefore it is invisible to so many.

Hi, my name is Karen and I'm a Spoonie.