Sunday, August 28, 2005

Do you ever...?

Do you ever just wish you could turn back time?

I would like to go back to before the Rheumatoid Arthritis.

Do you ever wish you could just sleep and wake up refreshed?

Most of you probably do.  I often wake up still tired.  Like today.

Do you ever wish you could just play with your kids?

You probably do, and never give it a thought.

We played family whiffle ball last night and apparently, I am now suffering in several places because of it.  I woke up in pain.  My shoulder from swinging the bat.  My knees, my ankles from the running.

Do you ever wish you could just not take any medicines?

You may have a choice.  I don't.  Today was methotrexate day.  I actually put it off from Wednesday, since I had that reaction to the Remicade, so it has been 11 days since I last took it. 

It makes me tired and upsets my stomach a bit.  It is hard some days.  Thankfully, it is just once a week, right?

I also had to take my other "usual" meds...no day goes by without them.  Feldene, anti-inflammatory, 2 folic acid, a diuretic to help keep swelling down and 5 mgs of prednisone to keep away the inflammation and fatigue.

At night, paxil to help with pain, sleep and anxiety.

Do you ever just wish things were just simple?

I do. 

I wish I could just simply be well, just simply play and have fun with the kids without worrying about being sore, just simply take a tylenol or occasional motrin, not medicines that carry their own set of problems.  Just simple.

I just wish...

but instead, I have to fight.

Today, I am taking a jammie day.  Tomorrow, I will fight.

Be well,

Dawn

 

12 comments:

klconard1 said...

(((((((((((((Dawn dear))))))))))))))) oh yes the list of what we who have autoimmune diseases wish is endless.  I am sorry you are paying a big price for some family fun dear.  The long list of meds you must take to try and keep the symptoms and disease under control is not anything most folks can imagine!

I have my own lists, of course.  At the top of it is when I see people just standing out in the sunlight talking casually, I am occasionally filled with awe and envy.  They are not slathered in heavy-duty sunblock.  They are not wearing long sleeves and pants and wide-brimmed hats in the 90-100 degree weather.  They don't have to think of getting very sick --- not just for a few days but for weeks or maybe months --- or landing in the ER --- just by getting a few minutes of unprotected UV's.  I have forgotten what it felt like to be so free to do what most folks take for granted.

Time travel is not an option for us.  You --- and I --- and the others with autoimmune diseases know that well.  Instead we will do what we have to do and make the best lives we can make with what we have.  And pray for mercy, comfort, strength and patience while we do it!
loving you
karyl

thebaabee said...

Dawn,
I wish I could go back to before Lupus.

I wish I could even go a day without the myriad of meds I take.

Oh how I wish I could sleep and just once wake up refreshed.

Most of all I wish things were just simple.

But, they are not.  I watch my life going by.  Sometimes I feel that I am not part of that life.  Only sometimes.  Because most of the time I am very much in tune with my life.  In tune with the horrible pain and paralizing fatigue.  And, this is on all my meds.  Others do not know.  Others do not see.  I have become an expert at swallowing ten or more pills at a time.  Why wait.  Take one at a time ~~ I am told.  If I did that I would be swallowing pills all day.

But, I often wonder what sort of mess I would be in without those pills.  How would I feel?  At times, I wonder if taking them is in vain.  That maybe this is all not true.  Because after all "I look good."  Most of the time.  

Love you bunches ........... {{{{{{{{{{{Dawn}}}}}}}}}}
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS

jckfrstross said...

I hear ya but since we can't go back keep fighting:)

Essayons

Deb

lv2trnscrb said...

Dawn,

Praying for you! Although I think I would like to go back before things happened and see if there were ways not to have them happen, I'm still glad for some of the things that have happened in my life (even though they were unpleasant going through them at the time) because of what the Lord was teaching me during that time.

I don't have a chronic illness like yours, though, so I can't imagine the pain you deal with on a daily basis. Enjoy your pajama day today; because I know you will be up and fighting tomorrow.

betty

sdoscher458 said...

Instead of going back I wish they would find a cure. You would think with all the research that is going on someone, somewhere would come up with something to actually cure these diseases. I know some of the things they have help..but I am talking cure...I don;t think it's too much to ask for a country that put men in space.Sandi

darlenedennis said...

DO I EVER......
FOR YOU I WOULD WISH ONLY THE BEST, NOT TO HAVE THIS CROSS THAT YOU MUST BEAR. YOU MUST KNOW I WOULD TAKE IT FROM YOU IF I COULD.
BE WELL, YOU ARE STRONG AND CAN HANDLE ANYTHING GOD GIVES YOU, AFTER ALL YOU ARE MY DAUGHTER. ALL MY LOVE ALWAYS, MOM.

schnozbeary said...

You deserve a jammie day......Hugs to you!!! Penny

my78novata said...

OH man wish I could make my kids small and at home again all day on rainy days with me not out about and driving and going all the time. But I do wish I could feel good when I wake up. I thikn its from years of not more than four hours sleep a night. But I do bet you really wish you could wake up and turn back time

swibirun said...

Your post reminded me of how lucky I am.  Thanks for keeping my eyes on what counts!

I hope your RA slacks up and gives you a break!  Prednisone is some nasty stuff, but any steroid is.

Chris
http://journals.aol.com/swibirun/Inanethoughtsandinsaneramblings
http://journals.aol.com/swibirun/MyJournalJarSaturdaySixetcanswer

shar9416 said...

Dear Dawn,
My name is Sharon. I have been reading about your saga with the squirrel...good luck!! Sounds like he wants to be one of the kids.

I  send you hugs and prayers, and offer encouragement in your fight to survive the battle you are struggling with. I also suffer with health problems that have changed my life. I know what it feels like to dream of days when you could just jump out of bed and start your day like any other person and not be bothered with pills and regimens that reminded you that life was
forever changed.  Or sat up in bed and instantly your body said, hey...take it easy...a little slower, please...

I have severe kidney disease and I am headed for dialysis and transplant and also COPD (lung disease) with insulin dependent diabetes.  It seems the meds are endless. I try to look for the sunshine in any corner of my life and search for any reason to laugh and smile. My husband and I are on a quest to keep darkness at bay at all costs!!! But as you know, being human, the ugly ol' devil depression does rear it's ugly head sometimes.  I keep God at my side at all times...my family on the other side...hang in there girl. Don't be afraid to cry or ask for help either. No one can hold it inside and we all need help.

God Bless You and thanks for sharing. Your story about the squirrel is soooo funny, given him a seat at the table yet? Take care of yourself.
shar9416@aol.com

jgrand1 said...

Hi Dawn,  Sorry you are suffering so much from R.A.  I am sure you have tried every remedy under the sun but I would like to suggest Yoga to you if you haven't already tried it.  I also am warding off back and joint problems as I get older but find that yoga works wonders to help keep me strong, supple and flexible.  I get stiff if I stay away from it too long.  Dont' worry you don't have to stand on your head.  You can begin very gently.  Another alternative choice would be Acupuncture.  Haven't tried it myself but I know it can also work wonders with people in pain!

Jeanne x

nyboots said...


ENJOY YOUR JAMMIE DAY ! i WISH i COULD HELP YOU COULD GO BACK, BUT FOR NOW DO WHAT U CAN TO STAY AS STRONG AS POSSIBLE, EXERCISE, SUPPLEMENTS , AND KEEP LAUGHTER AND MUSIC IN YOUR LIFE EVERY DAY!!!http://journals.aol.com/nyboots/AssistedLivingCenterActivi