Still Feeling Like Crap

            

First off, I have to give Dawn a great big cyber hug.  http://journals.aol.com/princesssaurora/CarpeDiem/

                        

Since I have know her, Dawn has always been a big inspiration in my life.  There are times when I wake up in the morning and actually think I wish I could have an attitude like Dawn does.  She always puts things into perspective.  I'm trying Dawn.

      

Now, I am still feeling like crap.  Can't seem to shake this URT infection.  It's getting worse I think.  I get very short of breath.  I should call my doctor, I know, but I just don't feel like it.  I have a follow up appt. on Thursday.  Maybe I will be better by then.  I'm still on antibiotics.  Which has given me the start of a yeast infection.  Yikes.

I am hurting.  Mostly my right leg.  From hip to toe.  The duragesic patch doesn't even touch that pain.  Or, maybe it might be that much worse without the patch.  Who knows?  I'm forced to take the breakthrough pain meds my rheumi prescribed.  I have an appointment with my pain management doc on Thursday.  Maybe he can suggest something.

                                       

Hubby will be taking a test on Saturday afternoon.  For those of you who remember, he started a new job a little over a year ago.  Working for the City.  He has to take a test to go from provisional to permanent.  I believe that he will ace this test.  He is not so confident.  Please say a prayer for him.  I don't know why hedoesn't feel confident.  The man is an electrical genius.

                          

I have a oven stuffer cooking.  I didn't stuff it.  Just seasoned it and threw it into a Reynolds Oven Bag.  We are going to have that for dinner with some yummy mashed potatoes and corn.  And, some broccoli au grattin (sp? can't for the life of me remember how to spell this) for me and Lauren.  It's a cold day and I love cooking in the oven.  It just reminds me of love and family.  I have been using my slow cooker a lot lately.  It's really great.  Mom picked up some slow cooker cookbooks for me.  I bought some too.  It's really easy because I can prepare everything and just set it and forget it.  Eight hours later we have an entire meal.  I got those crock pot liners so clean up is a snap.  Also, my mother in law gave me a counter top convection oven.  This works great because I can cook an entire roast beef in half the time it takes in the regular oven.  I've made dozens of meals with this too.  Cooking when you have a chronic debilitating illness is a challenge.  When I am feeling crappie these things come in handy.  I'd appreciate any recipes from you guys.  I'm always up to try new things.

               

Well, I'm going back to lay down on the couch.  I have to get up every so often because of my leg pain.  It's time to go rest again.

Hugs,

LuAnne

 

Dawn's Meme

Good evening.  It's 1:24 AM.  I should be in bed, but for some reason I am awake.  I've been feeling sick for a few days.  I have (if I wrote about this before,forgive me.  It's just my Lupie Fog) an upper respiratory tract infection plus a urinary tract infection.  My doc put me on antibiotics and a cough med.  Hopefully the antibiotic will do the trick.  I always end up with pneumonia when I get a Respiratory tract infection and a UTI usually turns into a kidney infection.  These meds are going to screw up my coumadin levels.  In the four years since I have started taking anti coagulants I have never gone more than three weeks at a therapeutic level.  The meds I am on play havoc with my levels.  Some raise the level.  Others lower it.  For the past week or so I've been on increased prednisione.  That alone will screw up my levels.  Now add the antiobiotic and you have a recipe for disaster.  I suspect my level is high as I am developing purple blotches on my chest, legs and belly.  I also have petechiae on my feet and calves.  I have an appointment on Monday morning to have my INR levels checked.

This meme is from Dawn (http://journals.aol.com/princesssaurora/CarpeDiem/)

A     Apple or PC?

We have two PCs, one Apple and three laptops

B     Banking... online or in person, and if in person, drive thru or inside the bank?

Just like Dawn, I check my balances online (or via telephone), most banking is done via the drive through or sometimes at the bank (it's in Pathmark).

C     Coffee and Chocolate!  The two most important 'C's  Favorites please.

I'm a coffee addict.  Love Eight O'clock French Roast.  If I am near a Starbucks I'll stop in and get a white chocolate something.  And.... talking about chocolate.  Has anyone ever had Godiva White Chocolate?  I am dying to try Duncan Donuts White Hot Chocolate.

D     Dogs.  Do you have one?  If yes, what kind and it's name and why you named it that.  If no, then if you had one what kind would you choose?

We have Wilson.  He's a black lab mix (I think Dalmatian).  Willie is still a puppy at 10 months old.  Talk about rambunctious.  He is a "Dog Burglar".  He'll steal anything that he can chew up.  I lost count as to how many times I have chased him around the dining room table.  He is a cutie pie.

E     Elvis.  There was only one.  Favorite song, and if you ever or your parents ever, saw him live.

It's Now or Never.  Mom loves him.  I don't know if my parents ever saw him.  It's possible though because they spent a lot of time vacationing in LasVegas in the 70s.

F     Flowers.  Do you have a favorite to receive and/or a favorite to give?

My favoriteare Lilies.  I love to grow Sunflowers.  I always send mixed arrangements.

G     Grandparents, do you have any left and if you are one, to how many?

They are no longer with us.  My maternal grandparents owned the house we lived in.  It was a two family home and they lived upstairs.  I called them Grandma and Grandpa Upstairs.  My paternal grandparents lived a 25 minute car ride away.  Hence, they were Grandma and Grandpa FarAway.

H     Handy or call for help?

I can do stuff.

I     IOU's any out there to a person, a friend or family?

Nope.

J     Jello.  Love it?  Hate it?  Favorite flavor?  With whipped cream or cool whip or neither?

There is always room for Jello.  I love it.  Lime Jello  with Whipped Cream.  Or Cherry with Bananas inside.  None of that cool whip stuff for me. 

K     Kiss.  Do you remember your first real kiss?  Where, who?

Yes.  I had just turned 15.  It was with SM.  In front of my house.  I had never kissed (made out, LOL) and I faked it.  Little did I know, he had never kissed  either.

L     Language.  Do you speak any others?  Fluently or a little?

I used to speak proper Italian.  My paternal grandfather was from Genoa.  Now if you would ask me to speak it, I couldn't.

M     Mickey Mouse or Donald Duck?

Mickey

N     Neighbors.  Do you know their names?  Occupations?  Phone numbers?  Or not?

Yes.  To the right, I know their names, occupations and phone numbers.  To the left their names and occupations.  I know most of my across the street neighbors.  We are friends.

O     Olympics.  Do you watch?  Which is your favorite winter or summer?

I love the Winter Olympics.  Love to watch figure skating.

P     Pluto.  What is your take on the planet being downgraded? 

Sorry, but I could care less.

Q     Quiche.  Have you ever had it?  Do you like it and what is your favorite?

Love it.  Broccoli with mushrooms

R     Refrigerator.  Name three things in your refrigerator that you think are unusual.

Suppositories, Coumadin testing materials, can't think of anything else.

S     Safari.  Have you ever been to Africa on one?  A theme park version?

I've never been to either.

T     Telescope.  Have you ever looked thru a telescope? 

I can't recall

U     Umbrella.  Do you have one and what is its design?

I have an obsession with having enough umbrellas and gloves.  Three are tiny; black ones.  There is one giant rain umbrella that says LuLu's on it.  And, an assortment of others in various colors.

V     Vintage.  Do you have a favorite wine to share?  Or drink?

nope.

W     Willies.  What gives you the willies?  You know, that shudder you can't stop?

Watching medial operations on TV

X     X-ray.  Last one?  What body part and why?

ARE YOU KIDDING? 

I am always going for some kind of X-Ray.  Especially during those frequent Hospital Stays.  They always do a chest film.

Y     Yolk.  How do you like your eggs?

I like them over easy. I also love soft boiled eggs.

Z     Zodiac.  What's your sign and does it fit your personality, in your opinion?

I am a Taurus. But don't believe in it at all.  I never read my horoscope.

Now you try.  I am tagging you all.

Well, the great feeling has gone.  I am sick again.  I am unhappy about this.  Urrrggg!!!

No other words to write about this.

I want to thank Paul over at http://journals.aol.ca/plittle/AuroraWalkingVacation/ for doing an entry about how a "normal" person views others with chronic illnesses.  It was very refreshing to read his entry.  Not many people get it.  Paul seems to though.  Something he wrote was quite sensitive.  He wrote about how Dawn http://journals.aol.com/princesssaurora/CarpeDiem/ looked in her mirror and saw that she needed to put her hair in a pony tail but couldn't because her hands hurt. (Dawn has Lupus and RA).  It's not a simple task for those like Dawn and myself (and the countless others who blog about their illnesses.  I have written about the effort it would take most days for me just to get into a shower.  On worse days even the act of washing my face was the chore from hell.

I hope everyone reads Paul's entry.  And, just take the time  to reflect about the things that you don't think about when you are doing them.  I read a story somewhere, or saw a show I don't remember about someone trying to see what it was like to be blind.  They put a blindfold on their eyes and walked around for a little while.  It gave them a taste of what it was like.  Think about these things.

I also want to thank Paul for his suggestion to offer help.  I want to make one more suggestion.  Offer company.  Offer to sit and have a cup of coffee (bring the coffee because it might be a day where making a pot of coffee is too much).  Visit.  I sit alone most days.  Living in a changed life.  Losing friends.  I would cherish a visit from someone.  Anyone.  Someone to sit and talk with.  Someone to make me feel like a person. 

PREDNISIONE AND MY eBAY STORE

I am so happy today!  I feel great! 

I wasn't so great at the beginning of the week.  I was really hurting horribly and was fatigued and drained beyond belief. 

Hubby suggested  that I give my rheumi a call, but at first I said, "Why? What is he going to do except tell me to go to the ER?" and I didn't want to do that.

But, the more I thought about it, the more I realized that I might be feeling that way because of the reduction of prednisione.  So, I gave the rheumi a call.  We spoke through my tears and came to the conclusion to increase the prednisione to 15 mgs a day.  The doc keeps trying to bring me down to 5 mgs a day and every time I get below 10 I start to flare.  It's amazing how the prednisione works.  There are a lot of side effects.  But right now, for me, the benefits outweight the risks. And, until Rituximab is approved here in New York for Lupus, this and methotrexate is what I have to use.

Here are some:

What side effects may occur:
Deltasone may cause euphoria, insomnia, mood changes, personality changes, psychotic behavior, or severe depression.  It may worsen any existing emotional instability.

At a high dose, Deltasone may cause fluid retention and high blood pressure.  If this happens, you may need a low-salt diet and a potassium supplement.

With prolonged Deltasone treatment, eye problems may develop (e.g. a viral or fungal eye infection, cataracts, or glaucoma).

If you take Deltasone over the long term, the buildup of adrenal hormones in your body may cause a condition called Cushing's syndrome, marked by weight gain, a "moon-faced" appearance, thin, fragile skin, muscle weakness, brittle bones, and purplish stripe marks on the skin.  Women are more vulnerable to this problem than men.  Alternate-day therapy may help prevent its development.

Other potential prednisione side effects from include:
Bone fractures, bruising, bulging eyes, congestive heart failure, convulsions, distended abdomen, face redness, glaucoma, headache, hives and other allergic-type reactions, increased pressure inside eyes or skull, inflamed esophagus or pancreas, irregular menstrual periods, muscle weakness or disease, osteoporosis, peptic ulcer, poor healing of wounds, stunted growth (in children), sweating, thin, fragile skin, vertigo

(the above is from: http://www.bodynhealth.com/inflammation_prednisone.html)

Anyway, I feel pretty good.  I even went out to Target yesterday and did some shopping.

MY eBAY STORE~~  http://stores.ebay.com/OCCUPY-MY-TIME

Please check it out.  And, if you would, please give my store a little plug in your journal.  I would really appreciate it.

I started selling on eBay to have something to do.  Hence, the name OCCUPY MY TIME.  I just went around the house and collected stuff that we no longer used or needed and listed them.  So far I have been selling at a low level, but that is okay with me.  And, when my Lupus flares, I just put the store on vacation.  Or, if I happen to have a few bad days and need to ship stuff out it's pretty easy.  I have a postage scale here.  I can order boxes from the Post Office and they deliver them. Bubble wrap, padded envelopes, packing peanuts and packing tape are easily ordered on eBay for a fraction of the price they sell for at one of those mega office supply stores. Most of the stuff I have for sale is already partly packaged.  So all I have to do is print the postage label out and slap it on the package.  The USPS even comes to the house and picks up the packages.  It's pretty easy.  And, if I sell stuff and make a profit it gives me money in my Pay Pal account to buy stuff we need.  I even have a Pay Pal Debit Master card to use to purchase stuff locally.  I love it.  Most of all it helps keep me sane.  I miss working outside the home so much.  This helps with our finances too!    Check out the store.  http://stores.ebay.com/OCCUPY-MY-TIME

Have a great day Gentle Readers.  I love you guys for all the support and comfort you have given me through the rough times.

 

 

MY POOR HUBBY IS SICK

Now, you have to know my husband to understand this.  It takes a whole lot to get him to stay home from work.   Today is his second day home from work.  Hubby has a very bad Upper Respiratory Tract infection.  I mean bad.  He is coughing up a storm.  He says that it feels as if his head is going to explode when he coughs.  So, yesterday, off to the doctor we went.  Dr. C examined him and yup, he is sick.  I asked if he needed to stay home from work for a while and the doc said, YES, he needs to rest.  Right now he is sleeping soundly.  I heard him stirring in the bedroom about an hour ago and took that opportunity to get some of the prescription cough syrup in him.  When I go back to bed in a little while I'll bring him some water and his antibiotic.  I would like him to finish out the week at home, but no.  He plans on returning to work tomorrow.  Why, you ask?  Because if he is not there on a Friday, he won't get to work overtime on Saturday.  He is like that.  He will never turn down working overtime.  What a guy I have!! 

I'm coming down with what he has.  There was no way to avoid it.  Dr. C. gave me a prescription for a Z pack just to have in the house.  He suspects I will need it.  I don't know if you remember but last year at this time I ended up in the hospital with what they thought was pneumonia.  Turns out it was just a very bad case of bronchitis.  I have to watch out.  So, the doctor wanted to be prepared.

 I am enjoying having Gary home.  We both like each other's company.  Even if we are just sitting around watching television, we are happy.  We don't go out much and that is fine with both of us.  Every once in a while we will go out to dinner.  Gary said that if he feels better today maybe we will go to Applebee's for a late lunch, early dinner thing.  We received two gift cards for Christmas.  We'll use the Applebee's one today.  Next week we will use the Outback card.  We will be celebrating our anniversary next Tuesday.  We will be married for 23 years.  The best years of my life.  Both of us always say that we can't believe how fast the time has gone by.  Time flies when you are having fun. 

53 Things about my hubby and one for good luck

I just finished reading Dawn's journal (http://journals.aol.com/princesssaurora/CarpeDiem/) where she lists 42 (plus one for good luck) things about her hubby.  I am going to follow her by listing 53 (plus one for good luck) things about my hubby.

1.  He will be turning 54 this April.

2.  He is four years older than me for one month.

3.  I love him dearly.

4.  There is no one in this entire world who comes close to being the man he is.

5.  We will be married for 23 years in one week.

6.  He puts up with a lot of crap from me. I'm not talking about my illness, just my craziness.

7.  Speaking of my illness, he takes great care of me.  He has picked up the slack and has done so gladly.

8.  He tells me that he married me IN SICKNESS AND IN HEALTH.

9.  His name is Gary.

10.  Gary is an electrician and works for the city.

11.  Gary has no idea how wonderful he really is.

12.  Gary is very involved with the Boy Scouts.  He has gone on almost every camping trip with our son.  He belongs to committees.  And, was Quartermaster.

13.  I love him so much.

14. I am his third wife.

15. He had a beloved White Shepherd named Baron when he was growing up.

16. He knows how to do EVERYTHING.

17. He is an amazing father.

18. He is an even more amazing husband.

19. He has had micro surgery twice.  Once to repair his hand that was almost torn off.  It was stuck when a bucket truck malfunctioned.  Also, the tip of his finger was crushed while he was working on the subway tracks.

20. No matter how much his hands hurt, he will give me a back massage.

21. He has a happy personality.

22. He has never smoked.

23. He doesn't drink alcohol.

24. He is a meat and potato man.

25. He cooks.

26. He used to ride motorcycles.

27. He still kisses me good night.

28. And, when he leaves for work and comes home.

29. He is one of the funniest men I know.

30. He can fix just about everything.

31. He is very handsome.

32. He is 6 feet tall.

33. He suffers from the gout.

34. Has bad knees.

35. He works very hard to take care of our family.

36. He has nice feet.

37. Everyone who meets him, loves him.

38. He has a great personality.

39. He never makes a phone call just to chat with someone.

40. Although, he calls me during the day just to see how I am.

41. When I am comfy on the couch, he makes sure if I need a drink I have one.

42. He always asks if I need anything.

43. He is my rock.

44. He is my lover.

45. He is my hero. My rock.  He has strong shoulders both physically and emotionally for me to lean on.

46. He hardly ever says no to me.

47. He loves our puppy.

48. Our puppy (Wilson) goes crazy when he comes home from work.

49. He enjoys Sinatra just as much as Big and Rich.

50. He sings along to songs.

51. He is cute.

52. No matter how much he hurts, he gets up every day and goes to work.

53. He leaves an hour early for work.  He has never been late to work.

54. He is very responsible.

I love him more than I could possibly say.  These 54 things are only a smigin of what he is about.

My mood is happy because of him.

 

I'm not writing in this journal as much as I used to.  I thought that it was because the words didn't flow the way they once did.  My mind, I would say, is not the same.  Blaming everything on my cognitive dysfunction was my way out of having to make decisions.  HA!!

But, in reality, my lack of journaling really only comes down to one simple fact.  I could care less about My Lupus.  I've just come to terms with it and it's part of my daily existence.  My journaling was my way of learning.  My quest at understanding.  My lupus persona.

I believed that I had to embrace this Lupus crap the way I had embraced everything else in my life. 

But, I was wrong.  I don't have to embrace a gosh darn thing.  I used to like the "I have Lupus but it doesn't have me!" slogan.  I don't any longer.

It's not necessary for me to rise above Lupus.  I'm a person with Lupus and most of the time it does have me.  It's taken away a lot of my zest.  But, who cares?

I no longer whine about it.  I could you know.  But, I don't.  It's been too long and most are tired of hearing about it anyway.  I am tired of hearing about it.

I am no longer diligent in keeping my medical appointments.  There were times when I would hobble and limp.  Hold on to anything to get me to the doctor's office.  Now, I cancel and reschedule.  Another week or two is not going to make me better.  I'm not going to get better.

This is not me giving up.  This is not me feeling sorry for myself.  This is definitely not me whining.  It's just me falling into my place in life. 

I no longer care that I have Lupus.  Or if that new stabbing pain behind my eye is something to be concerned about.  If it is, it will reveal itself eventually.  I no longer search for answers.

I just no longer care that I have Lupus. It's not my job to keep abreast of the new treatments.  That is my doctor's job.

 I am LuAnne.

Tags: lupus, self-pitty, medical crap, research, LuAnne

Karyl's Weight Loss Journey

I would like you to check out my friend Karyl's journal.  Karyl has embarked on a weight loss journey.  Actually, she is a contestant in a local weight loss challenge.  Drop by her journal to give her some moral support.

http://journals.aol.com/klconard1/GlimpsesofEternity/

I know that Karyl has put the weight loss bug in me.  I have to do it too.  Thanks Karyl and Good Luck