"We Have No Surgery Scheduled" she said

What a day. I woke up planning my week before surgery. I returned the waterproof cast covers at Walgreens. While sitting in my car near a busy intersection, I phoned my surgeons office. I had not received my pre-surgery packet. When I got the docs assistant and I asked her about my surgery packet. She replied What surgery? Huh?! I said I am having surgery on April 5th. She said no you aren't. You aren't scheduled. I broke into actual tears. I was crying hysterically. I hung up the phone. People walking by were staring. Five minutes later I decided this needed a face- to-face talk.

I got to the office and she took me in the back and explained to me it was a mistake. Turns out some temp scheduled me as an appointment not as surgery. She never left a message for the docs assistant. so, now I have no surgery time scheduled.

So no surgery on April 5th. The world has mae it clear surgery on 4/5 is a bad idea. I am at peace for many reasons. One being that even though my plans are messed up, my work commitments will be easier in April. This will work I think.

I am exhausted and need to go to sleep. thanks Sabrina.

Until tomorrow...

Here's the Plan

Today I went to see my Rheum Doctor.  She gave me a plan for the impending surgery.  Here is the plan:

1. Stop Enbrel immediately.  Until a couple of weeks after the surgery.  I have to wait to make sure there is no infection before I begin giving shots again.
2. Large doses of steroids before and during surgery to keep from having adrenal insufficiency.
3. Take double doses of steroids for a few days after surgery and then taper down slowly.
4. Be prepared that recovery can take double or triple the amount of time the surgeon says it will.

 My rheum doctor was supportive and motherly.

Then we spoke about my bone density test.  After the surgery, I will try and taper down on the steroids.  I have tried before but always have some crazy flare or something worse.  Once I get over this surgery, I will give it another try.

One week until surgery.  I am getting everything organized.  Getting my hair cut, shopping for food, getting a waterproof thing to cover my cast, putting movies on my Ipad, bought a book, and filling my Rx.

On a side note: just found out my niece and nephew both have chicken pox!! Poor dears.

Until tomorrow...

No Internet

Yesterday we had a technology breakdown. Something happened with our phone line and since we have dsl, we lost the internet. This was a problem because among other things, I work from home. I whittled my internet work down and I what little I had to do I did through my phone.
It is funny how dependent we are on the internet. All day and evening I wanted to look something up or do something and it involved using the phone or the internet. We were lucky I have a work phone line so in a pinch we could use that.
Finally today at 12pm it was fixed. Halleluah!

Focus On The Journey

It is funny. When you go on a trip people say "Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it.” A quote by Greg Anderson. I think I have been focusing too much on the destination. Not enough on the journey of this surgery experience.

How soon will I be back on my feet? How soon will I be back at work? Will I be able to drive? Will I get a secondary infection? Will it take me forever to heal? These questions have been consuming me and quite frankly, no one has the answers. Not the doctors, not the surgeon, not even a higher power. It all depends on how things go. It is out of my control so I need to let it go. I need to block out all the voices that are leading me down that path. Because those voices are driving me CRAZY! There are no answers.

I just have to go into this surgery with the faith and positivity that I face every challenge. It is going to be okay however it turns out. Take it one step at a time. Pre-op tests completed. Check. Next I have to find out about my medication. Then I have to let my doctor know what I have decided.

Not sure if I am 100% there yet without talking to Brenda but I am feeling much better. I am so grateful for everyone who has offered up some kind words, advise, supportive words of wisdom on or off my blog. You have no idea what this means to someone who is going through a rough time making a decision. I would squeeze out a tear now but, alas, Sjogren's kicks up its ugly head again and no tears will run down my face. But know there are tears running down my face in my mind!

I will go back to finding the joy not only in the destination but also in the journey. No matter how painful that journey is! (Isn't that what pain medication is for? Ha ha ha...). She's back!!

Until tomorrow...

Thank You For Your Comments

I just wanted to leave a quick post thanking everyone for your helpful and insightful comments. Making the decision whether or not to have the surgery on my ankle has been difficult. The pros and cons have been weighing heavily on me but hearing your support makes me realize there is no wrong decision. I just have to choose. Surgery or no surgery. I am getting closer to a decision, I promise! So thank you.

Until tomorrow..

To Do Surgery Or Not To Do Surgery, That Is The Question.

Today I went for my pre-surgery check up.  I thought nothing when I went to the office, parked my car, took the elevator up, waited for my appointment.  I had my EKG with the nurse.  Then my doctor came in. And we began talking. I asked him what he thought about my impending surgery.  He said he was worried.  I asked why.  He said because I am the "poster child for RA" he is worried that I will not heal well.

He calls me the poster child for RA because if there is an infection I will get it, if there is a weird thing, I will have it, if there is a slight chance something could happen, it will happen.  I am just that person.  The Lucky Person!  I get all the gifts!  My friends laugh!

Since I don't heal well and recuperate well, he is worried this will not go well. He said I never want you to have surgery.  Ever.

Case in point: Knee surgery prior to being diagnosed took 9 months to heal.  Supposed to be up and walking in three days!  I had to have a second knee surgery because I still could not walk after the first one.

Appendicitis should take about a week to be up and moving about.  Two weeks to be part time back at work.  I was back at work at two weeks only to end up back in the hospital with a secondary infection!  Three more weeks to recoup from that.

A simple case of a cough that turned into bronchitis and then pneumonia.  You all know!  It is never simple.

Here I am in his office and he is telling me this two weeks before surgery.  What do I do?  He suggests a second opinion but that would mean putting off the surgery.  I have everything organized!  I just told all my clients and they are all ready.

He asks me if it limits my life in any way.  Well, YES.  It isn't as painful as it was a year ago or even 9 months ago but I think I am just used to it.  As we all know RA patients have crazy pain tolerance.  I think a regular person would have given up by now.  I can walk fine as long as I don't twist my foot/ankle in any way.  Once I do ZING, knife through my ankle.  So I don't walk my dogs or walk very far.  I have put on weight from not exercising.  I am not myself because I can't do things.  So, yeah, it has limited my life.

He then told me (after I asked) what could go wrong.  He said it could end up worse off then it is now.  Better the Devil you know, then the Devil you don't?

Now I am distraught. What to do?  I was so mentally ready to get this done.  Now I am so conflicted.  To do the surgery or not do the surgery, that is the question.

Until tomorrow...

Night in the Pet Emergency Room

Remember how your mom used to say "It's all fun and games until some body gets hurt." Well, I say it to my dogs when they run around and play. Last evening someone got hurt. They were running around and the little dog came inside with what looked like something on her foot. A few minutes later we noticed her foot was bleeding. Twenty minutes later it was still bleeding so I took her to the pet emergency room. She would not let me touch it and bared her teeth if I even went near it. I decided to let a professional take over (hey they get paid to deal with biting dogs!)

Turns out her baby toe nail was ripped off down to the quick! Very painful. They had to clean it off and give her some pain meds. She was so funny on the pain meds! She was standing up and weaving. She looked like a really drunk dog. Sad but so funny. Then she began dozing off in that, I am drunk but don't want to fall asleep, kind of way. So cute.

Two hours later they brought her out and her foot was still bleeding. She went back and they put a florescent pink bandage on her little foot. Then she got The Cone of Shame. Poor little girl.

The photo below is the next morning when she had a baggy on her foot to keep the bandage dry. She is holding up well despite it all. She has two weeks of antibiotics and pain meds to look forward to, as well as the cone. She should be all better just in time for my surgery. She is not too happy.

Until tomorrow!

Mizunderstood

Have you ever said something to someone and it is misunderstood? Something so innocent. The other day I said something to someone, I will call him John. very casually, with no malice. Then yesterday I found out John heard something totally different. What John told a middle person I said just blew me out of the water! It was a whole story using words I never said and would never say.
Did John make it up? Or did he really just mishear what I said? And if John misheard me, did he put his slant on it? His bias? Because what he said I said, is not what I said.
Well, I have learned my lesson. I will be VERY careful around John in the future. I will be cordial and not say much else. Fool me once shame on you, fool me twice shame on me.

Things That Remind Me Of Other Things

I was driving the other day and I saw this cute little car.  It was adorable.  It looked like a toy car.  I am really tall and I am not sure I would be able to fit in it comfortably.  I already have a small car and I would not want to go any smaller.  The car was a Smart car.  So teeny.

It made me think of these little baby socks that I bought my adorable nephew last year.  They are socks that look like the child is wearing shoes.  They are so cute.


So is the car.  The lines in the socks and the car are very similar.  The car and the socks come in the same colors. So Cute!  But I am still not so sure I would want to drive the little car. 

Have you ever seen something that reminds you of something else?  Two things that are totally different. 

Until tomorrow...

Surgery, Surgery Everywhere

Okay, we all know I have to have to have surgery in a few weeks.  Then I found out my partner has to have surgery sometime this year to remove very large fibroids. They are size of a small watermelon. I call it the alien.

Then my friend called to tell me she needs knee surgery soon. What is going on? Is there something in the water? In the air?

The three of us are going to have to help each other out. It is just surgery everywhere I turn.

Poor Bones

Well, it is true.  I have poor bones.  I had the Bone Density Test and got the report today.  Well, I got the report six times.  Talk about being efficient!  Or not. The person faxed it to me six times. 

Drum roll please... the results are that I have osteopenia.  That is like pre-osteoporosis.  It is already showing in my lumbar and my ankles.  My neck seems to be fine so far.  It is borderline.

Digitalart

Borderline.

 Feels like I'm goin' to lose my mind.

You just keep pushing my love over the Borderline.

(Just a little music interlude.  I just can't say the word borderline without singing that song. Ah, the 80's...)

Anyway, I guess something is going to have to be done.  I am at a "high risk for stress fractures".  A little late for that diagnosis, don't you think?  How many do I have to have before someone comes to that conclusion!  Okay, seriously, seems like some calcium is going to have be taken or something.  Since I am lactose intolerant, I can't eat cheese or ice cream or anything fun like pizza.

I see my doctor to discuss the options next week.  Let's hope it doesn't include horse-sized pills.  I hate the horse-sized pills!  They should only be given to horses!  With their strong bones.

I will check in tomorrow!

I Was Right and He Smiled

Went to see my primary doc yesterday . I had to break the news to him about all the fun I have been having. You know, stress fractures and torn ligaments. Of course he wanted to see the MRI report.  He smiled when I said I was right about having a stress fracture in my ankle all along and the Other Doc missed it. He said the edema around my ankle concerns him.  I should just diagnose myself sometimes! We have a plan now to do a pre-op work up next week and and stress doses of steroids during and after surgery.

Today is the big bone density test! Yippee! Let's hope it goes well. Gotta rise and shine to get to the appointment on time!

The bone density test was quick. It took me longer to dress and undress.  I should have just gone in my pajamas and dressed for work there!  Results in about five days.

Worst Night Of Sleep Ever

I don't know if it was Daylight savings Time or the cup of tea I had or the stress I am under or what but I could not sleep last night. First, I could not go to sleep. I was working and then I realized it was 12 am. I went to bed. I let out the dogs and turned on tv like every other night. Next thing I knew it was 1:30 am. I have to be up at 7:30 am. I turn off the tv and closed my eyes. Nothing.
Nothing happens. I may have dosed off for a few minutes but then I have to get up and pee. This goes on all night. Dose for a few bit then get up to pee.
This is not like me. Normally I can get up in the middle of the night and go back to bed and fall back to sleep. Oh, sometimes I have bouts of insomnia but not like last night. I usually have problems falling asleep because I am thinking too much. I can solve that by reading or putting on some boring tv show that lulls me to sleep.
Last night was different. Like I got some kind of energy shot. Maybe it was the tea. Maybe it had caffeine in it. I will check that out. I don't normally drink caffeine.  Meanwhile wish me luck keeping my eyes open and my brain in the game!

Dogs Don't Have Watches

Dogs don't understand Daylight Savings Time.  Neither do babies.  But I am writing about dogs because I have dogs.  My dogs (Lucky and Happi) do not get it.  Especially this year.  Why this year you ask?  Because usually winter is dark and gloomy which makes the dogs think 7 am is still night time so they sleep late.  This year the west coast has not had a usual winter so the sun rises at 6:45 am and it is sunny and bright.  Not that I am complaining!  My lovely Lucky and Happi get up and think the day has begun.

You see, dogs don't have watches.  They don't know how to read time so they use the sun. When the sun rises the dogs rise and want to eat.  When the sun hits a certain spot in the sky, it is feeding time.  They don't understand that the governments of the world have decided to have this thing called Daylight Savings Time.  They just know it when it is feeding time, waking time, and time to go to sleep.

So, each year we turn our clocks back and the dogs get so confused because the sun says it is feeding time and they are told they have to wait.  They sit by their bowl and cry and bark: Please feed me!  In our house we tell them to get some puppy watches because they have to wait a whole hour until 5 pm.  If we feed them too early then in the morning, they wake me too early to eat breakfast.

Today we turned our clocks forward and those pesky pups woke me at 6:45 am (before the clocks were turned) to tell me the sun was up and it was time to eat.  I got them to lay down for about 45 more minutes but then the crying and whining became unbearable and I got up to feed them and change all the clocks.  Starting tomorrow I wonder what time they will be waking me up?  If the clocks get turned forward does the sunrise come earlier or later?  Bollocks, will I be waking up even earlier until the sunrise gets later?  I guess I will be seeing some great sunrises!  

How Full is My Glass?

A few people have mentioned that I have not been my usual positive self about my upcoming surgery. I don't feel like I am being negative but folks have been pointing out that I seem less than upbeat about this medical situation.  A little glass half empty.
You see I have not had the best experiences with past surgeries. My recovery times have been long and I have a history of secondary infections. So any surgery makes me concerned.
I don't think my hesitation about surgery is negativity. It is nervousness. I want to have the surgery and recover quickly so I can get back to work. 
I don't see myself as anything as glass half full about this surgery. I know it will make me feel better and make the pain go away. I am not looking forward to April 5th but when it comes I will be my upbeat self.  I may even wear my tiara!

Being On Time

I like to be on time. Whether it is to an appointment or with a project. I hate being late. I get embarrassed. I want to be the on-time person.

Today I had a project due. It had no particular deadline but I said I would have it done by Friday in a meeting with a few people.  Last night I worked very hard to get it to a point where all I had to do was put the pieces together in Acrobat. Well, that is where all heck broke loose.

I worked for two to three hours and the stupid project kept coming out too large to email as an attachment. I kept putting together the project over and over to no avail.

I had a doctors appointment late in the afternoon and now I was totally stressed out that I didn't send the project before the appointment. While I was at the appointment, waiting for the doctor, I figured out the problem!  I had saved a scanned document at too high a dpi. That made the document too big to email. As soon as I got home I fixed the problem and got the project to the client.

I still was embarrassed that it was late. Also, I didn't need to spend so much time on one task today.

I have one client who is always late to meetings, phone calls, etc. I used to sit there and fume. Then I realized I could just charge him. If we were scheduled to meet at 2 pm and he showed up at 2:20 I am now relaxed. My clock started at 2:00. If he wanted to pay me sit and wait, well better for me!

How do you feel about being on-time?

Take Action to End Discrimination Against Arthritis

Traditionally health insurance plans have charged fixed co-pays for different tiers of medications: generics (Tier I), name brands (Tier II), and off formulary medications (Tier III). Each tier has a set co-pay such as $10, $20 or $50. Unfortunately, some health insurance policies are moving vital medications, mostly biologic medications, into "specialty tiers" that utilize high patient cost-sharing methods or co-insurance. This fourth tier now commonly requires patients to pay a percentage of the cost of medication – from 25% to 33% or more, often hundreds or thousands of dollars each month – rather than a fixed co-payment amount. 

U.S. Representative David McKinley (R-WV) has agreed to introduce legislation later this month, known as the Patient Access to Critical Therapies Act (PACTA), to end this discrimination by requiring insurers to impose the same co-pay obligations for Tier IV/specialty drugs, such as biologics, as they do for Tier III medications. 

Rep. McKinley has agreed to be the lead sponsor for PACTA and he needs your help getting other Members of Congress to support this legislation.

You can help get co-sponsors for PACTA! Please click here to send a pre-written letter to your U.S. Representative to ask them to be an original co-sponsor of this legislation.

I encourage you to edit the letter to share your story of how high-cost sharing of medications have affected your life.

Joining the Challenge in April

April is the Health Activist Writer’s Month Challenge! I figure since I will be laid up for some of the month, I might as well join the Health Activist Writer's Month Challenge.  I like these challenges because they focus my posts.  Sometimes the posts ideas are dry and hard to do but for the most part they make me think.  I also try to stick to the challenge but if I have something else to say, well, I am going to veer off and say it.  By signing up early, I will get the blog suggestions ahead of time so I can think them through.  Thinking is half of my process.  Double Stuffed Oreos are the half.

If you want to join me in this challenge, just click on the join now button and sign up.  It is more fun to do these challenges when others are doing them too.  I like reading other blogs and seeing the different angles folks took on the challenge.  I remember the challenge last year, the "National Health Blog Post Month".  It really made me address my issue of contemplating subjects to write about.  I would read other people's blogs and think "wow, I should have written that!"  I no longer read other blogs before writing my own. 
 

Join me – participate in the Health Activist Writer's Month Challenge – 30 posts, 30 days: http://bit.ly/xLV5yz #HAWMC

Best Gift

Recently I had a birthday and today I received the best present. My sister-in-law (SIL) and my brother sent me some scrapbook stuff. Not only did I get some very colorful pages for scrapbooks, I also got a cool kit in which to put the do-dads. When I scrapbook I always have a ton of things I call do-dads. They are little items that get adhered to the scrapbook pages to give it pizzazz.

My SIL sent me a kit that has two sides with four containers on each side. The containers look amazingly like my pill holder for a whole week. You know what I mean: the pill holder that has seven sections, one for each day, and is about five inches long. My SIL filled about one-third of the sections with little do-dads. Some are moving eyes, ladybugs, and flowers. This is SO great. I am excited to do a scrapnooking project. If only I had some time to work on a project.

I have two scrapbook projects waiting for me to work on: when we got married during the Winter of Love and one for our dog, Taiko, who passed away. I have the books and the do-dads, I just need the time. Where does it all go?

Rebecca, Really?

Book club was tonight. We all brought books to vote on. I brought three books and another member brought the same book. I thought for sure our book, The Kitchen House, was a shoe in. I was really looking forward to reading it.

Somehow the tide changed and all of a sudden the group wanted to read Rebecca. Ugh! Not that I dislike the book; honestly I have never read it. I am just not a big fan of the classics. I think one classic a year is enough. Sometimes the classics are slow moving and wordy. I know I am supposed to love the classics and I try, I really do. It is just too hard. I took a whole semester of Shakespeare in college and that was torture. I want to read for relaxation and fun. I don't want reading to be work.

I think I am going to skip Rebecca and read The Kitchen House. I am going to be laid up after surgery so I get a pass.

My feeling is Life is too short to read boring books! What would you do?

I scheduled my surgery for April 5th in the morning. I am glad to get it on the calendar. Now it is real.

Choosing A Book

I spent an hour tonight looking at books for book club tomorrow night.  For the last few book clubs the members have not been bringing many options to vote on.  So I decided to find some options to bring with me.  Since I don't have time to go to the library or to a book store, I am printing out options from the internet. 

The books for book club have to be a certain type of book.  It can't be too gory (one of our members doesn't like too much gore) or too romantic.  If it is too romantic, there is not much to discuss.  Plus sometimes it gets uncomfortable discussing really romantic themes. It is best if the book has some sort of controversial theme.  Someone dying or moves somewhere for a reason.

Like the book Hotel On the Corner of Bitter and Sweet.  The story is about two people who meet as kids and then a tragedy hits and one of the kids has to move away.  It talks about how that incident molds not just the person but their family.  That is a great book to discuss.

Or Like Water For Elephants.  The story is about a guy who has a tragedy occur and he joins the circus. The story goes on to tell you how his life changes and is told through the voice of an elderly man.  There were lots of ethical issues to discuss.

This time we have been reading Finding Nouf.  It was a mystery that kept me guessing until the end.  I really didn't want to put it down.  Because of the way the murder mystery occurred, there are issues to discuss.  I am not sure how long the discussion will last because the book doesn't have too many controversial points to discuss but we will see tomorrow.  I highly recommend this book if you like murder mysteries.

Tomorrow we will see what the next book club book will be.  Let's hope it is interesting. Keep your fingers crossed!

National Autoimmune Diseases Awareness Month

The month of March is the National Autoimmune Diseases Awareness Month. More than 50 million people suffer with one or more of the 100+ autoimmune diseases.

Here are some facts from their website:
1. 50 million Americans have an autoimmune disease comprising a major U.S. health crisis
2. There are 100+ autoimmune diseases including, lupus, Crohn's disease, celiac, Addison's disease, vasculitis, vitiligo, rheumatoid arthritis (RA), and ulcerative colitis.
3. Autoimmune diseases tend to "cluster" in families, for example, if your grandmother had rheumatoid arthritis (RA) or lupus, you could be at greater risk for developing an autoimmune disease.
4. Less than 13 percent of American's can name an autoimmune disease and yet it ranks as deadly as Cancer and Heart Disease.
5. Autoimmune diseases target women 75 percent more often than men and they are one of the top ten killers of women under the age of 64.

Unwanted Gifts

What do you do when someone gives you an unwanted gift? Every once in awhile I get a gift from a family member or friend that I don't need or want. I don't mean to sound ungrateful. It's just I already have too much stuff and if you saw my garage, you would understand. Sometimes I think my garage looks like we are hoarders. We moved, then packed up the house for a three year construction remodel, then unpacked. There are still boxes that have not been unpacked.

I have this one person who used to give me chachskis (you know things that need dusting) for every holiday. I finally had to ask them to stop. I was nice at first, When they continued, I told them I would send them back or donate anymore items they gave me. The "dustables" have stopped. I still get weird things from folks sometimes. I wonder of people are re-gifting or cleaning out their gift drawer.

Do you have a gift drawer? I do. It is a small drawer of items I found on sale or things that folks have given me that are just not right for me.

Some of the interesting gifts I have been given: ornamental bird house (1' tall), set of gambling dice, and clothing with various decorations on it. I don't need anymore things. No more stuff.

So what do you do when you are given unwanted or not needed stuff? I say thank you. Then I put in the donation pile or regift drawer and smile that it will get a happy home.

The Lorax

After an incredibly busy day, we went to see the movie the Lorax. Before I give my review, I have to tell you what happened. I got these tickets for free through a credit card pre-screening give away. I was so excited to see this movie because a) I love animated movies and b) there was so much hype surrounding this movie. I got the tickets and they clearly said 7 pm.

At 5:30 pm we got ready and left to get there early. Free tickets mean lots of people and a long line. I drop off Brenda to get in line while I park the car. I parked the car at two minutes before six. I walk two blocks to the theatre where Brenda has the tickets. We go up the escalators to the theater and I get on line to get popcorn. Brenda goes to get seats. A few minutes later I go into the theatre and Brenda is standing along the wall. The movie has started and the only seats are in the front row. Now, it is a 3D movie. Not that great in the front row. Brenda asks me why I didn't know the movie was at 6 pm. I said the receipt said 7 pm.

So we watched the movie in the inclined position. At the end of the movie we check the receipt and sure enough it clearly says 7 pm!

The movie was cute. Very colorful. Not sure there was very much 3D to make it worthwhile or maybe we were too close to the screen to see it. It has a great message about the environment very reminiscent of Wall-E or this animated rainforest movie from years ago. It is a good message for kids to hear. Although I liked it, I was not blown away by it. I would recommend it for kids. The whole audience of kids seemed to like the movie.