Governor Brown signed Senate Bill 866 (#NHBPM Day 1)

On October 9th, Governor Jerry Brown signed Senate Bill 866 (Hernandez) into law.  I asked all of you to write in to Governor Brown to ask him to support this bill.  It will make getting a prior authorization so much easier.  No more waiting weeks to get that prior auth!  Thank you for your support!  

As it states on the Arthritis Foundation email:

This law will make it easier for patients to get their medication quickly by streamlining the prior authorization process for medications and granting automatic approval if the insurer fails to respond to the provider’s prior authorization request within the time frame allowed.  

  
SB 866 becomes law on January 1, 2012 and will do the following:  

• Directs the Departments of Insurance and Managed Health Care to jointly develop a standardized prior authorization form for medications, with input from stakeholders, by July 2012. 
• Specifies the form cannot exceed two pages and must be electronically available and transmittable. 
• Requires health plans and insurers to use the standardized form for all prior authorization requests by January 2013. 
• Specifies if a plan or insurer does not use the form, or fails to respond within two business days, the prior authorization is deemed approved.

Thank you again for your help in getting this bill passed.  Have a great Halloween!!

Halloween Memories

Happi as a Spider by Adrienne

I was listening to the radio today and the DJ was reminiscing about childhood Halloween memories.  I remember being a hobo, a ballerina (I was taking ballet at the time), a dog (I was young) and a bunny (I was older).  Here are some of my Halloween memories:

• Plastic masks that were so hot you couldn't see and your eyes watered
• Homemade costumes that you and your parents stayed up all night to make, not buy!
• Hearing "Monster Mash" on the radio
• Eating dinner early so you could get out early to trick-or-treat
• Having mom make a dinner that was easy to eat or that we could eat-on-the-go (like hot dogs) so we could get out early
• Pillow cases used to collect the candy, not these fancy bags or pumpkins
• Getting apples and boxes of raisins, yuck!
• Having mom check the candy for razor blades (never found any but we always checked)
• Trick-or-treating in our own neighborhood and the surrounding neighborhoods (they "bus" kids into certain neighborhoods these days)
• Collecting so much candy that we had to stop at home to empty the bag halfway through the evening
• Remembering to skip the house in the neighborhood that didn't celebrate Halloween or we would get a lecture from the residents 
• Sorting the candy and swapping the stuff we didn't like with each other or give it to the parents
• Still having candy at the end of November but no chocolate bars!  Those went quickly.

Do you have any memories of Halloweens past? Please feel free to share them. 

Made the Call

A few weeks ago as an Arthritis Ambassador for the Arthritis Foundation, I called the offices of  my Senators  and Representative to ask their legislative health aide if they would sign on to a letter being sent to President Obama and Health and Human Service Secretary Sebelius.  It is asking them to make arthritis a national health priority.  


The other day my phone rings and it is an aide from my Senator's office asking me to send her the letter.  Yeah!!!  I was so excited that I could not find the letter.  Wouldn't you know it?  Of course when my computer crashed everything was so well organized now my new computer doesn't yet have all my old documents on it and my desk is a complete disaster.  I still have the old computer on my desk.  I had to email the Arthritis Foundation to get the sign on letter and, of course, my email went into her spam.  Could all the stars have aligned?  


Finally, I got the letter and sent it on the legislative aide and never heard anything back.  BUT, I got a call back!  Yeah.    Who knows maybe she will sign on?  Maybe I will make a difference.  

Never doubt that a small group of thoughtful,
committed people can change the world.
Indeed it is the only thing that ever has.
- Margaret Mead

Preparing a Will

A year ago I decided to have a will drawn up.  For more than a year now I have been trying to finish my will.  Hey, I have a chronic disease, I think it is prudent to have all paperwork in order.  What if I end up in the hospital for a long period of time.  Will my friends and relatives know where my important papers are located?  There are a few documents that I still need to put in place and some I have done already.  Here is a list of documents that are important:

• Advance Health Care Directive lets your physician, family and friends know your health care preferences, including the types of special treatment you want or don't want at the end of life, your desire for diagnostic testing, surgical procedures, cardiopulmonary resuscitation and organ donation. This is also called a living will.  AARP has a listing by state of  Advance Health Care Directives.  Most Advance Health Care Directives include an Authorization to Release Heath Care Information but if it doesn't, fill out a separate form.
• Will a legal declaration by which a person, the testator, names one or more persons to manage his/her estate and provides for the transfer of his/her property at death. 
• Revocable Trust. A trust agreement is a document that spells out the rules that you want followed for property held in trust for your beneficiaries. Common objectives for trusts are to reduce the estate tax liability, to protect property in your estate, and to avoid probate.

According to an article in the Wall Street Journal, The 25 Documents You Need Before You Die, by Saabira Chaudhuri, it is prudent to have all important paperwork in one place, like a safe deposit box or safe. Below is a list of the items you need:

Will
Letter of instruction
Trust documents
Living will
Life insurance policies
Do-not-resuscitate order
Tax returns
401K accounts
List of all bank accounts
All user names and passwords
Personal and medical family history
Durable health-care power of attorney
Authorization to release heath care information
Housing, land and cemetery deeds
Marriage license
Divorce papers
Escrow mortgage accounts
Stock certificates, savings bonds and brokerage accounts
Proof of loans made and debts owed
Vehicle titles
Partnership and corporate operating agreements
Individual retirement accounts
Pension documents
Annuity contracts
List of safe deposit boxes

I am working on finishing my list. Some folks think this list is depressing but I am a preparedness buff so I don't find it depressing at all. What do you think of this list?  Can anyone think of anything left off this list?  Let me know!

The Cone of Shame

My poor little dog Lucky had to go to the veterinarian yesterday because she has been licking a spot on her leg.  She licks and licks her "elbow" and won't stop.  Since she has aggression issues, I can't sort of make her stop by any other means than by letting her up on the couch and letting her cuddle (which she isn't supposed to do.)  She isn't supposed to get up on the couch because then she thinks it is Her Couch and growls at our other dog Happi if she comes near it.

Anyway, I have gotten off point.  Poor little Lucky went to vet early Saturday morning and she was already miserable because I can't feed her before going in the car unless I want to see her breakfast all over the seat about four blocks later.  Little Lucky gets carsick.  So she got no breakfast and had to go in the car.  (It is funny, she loves to go in the car; just hates when it moves.  Explain that to me.)  We drove to the vets with her doing this funny little whine/cry at about the half way point. 

Lucky Cone of Shame by Adrienne

When we got there of course she was a perfect angel.  The doctor did things to her that if I did them she would have take a snap at me!  Turns out she has a little bug bite or something that is just annoying her and she keeps licking it.  We have to get her to stop and that requires antibiotics and The Cone of Shame.  She is not happy about the cone. 

I brought her home and she just stood in the middle of the kitchen with the cone on.  She didn't move.  It was like she thought the cone would disappear the way it appeared if she just stood there long enough.  Well, it has not.  We went on a walk and she walked five steps then stopped, five steps then stopped.  It took us 40 minutes to go around the block.  She wanted me to carry her but I held strong.  She has to figure this out on her own.  Then she woke up at 2:30 am to cry because she could not get comfortable.  That went on for 30 minutes.  Finally I took her upstairs to put her in her cage and she fought to not be put in.  My heart melted.  I told her she could go back downstairs but no crying.  She ran downstairs (as fast as you can with a cone around your neck!) and got in her bed and that was the end of the crying.  A little tough love.

This morning she climbed the stairs herself and went outside herself.  I was very proud of her.  She seems to have given in to the fact that she will be wearing this for a while.  (really only a few days)  But she seems to have a new attitude about it this morning.

It got me thinking about when I had a flare like last week.  I know I want to cry and curl up in a ball (and wish someone would carry me around and up and down the stairs!) But I know with each flare I make it through, I do feel proud that I made it through yet another battle.  It is not fun to wear a cone or be in a wheelchair or have a foot brace and it sucks to have to give into using assistance devices but when I felt better and did not not have to use them, I felt like I had conquered something.  I know that someday I may have to use some assistance devices all the time but that day is not today.

Finally Feeling A Bit Better

This flare has kicked my butt.  I have been out for days.  My brain just cleared about an hour ago.  This is the first time my hands hurt this way.  I have never had my hands hurt so bad that they woke me up from a sound sleep. The pain was really bad.  I had a migraine, my stomach hurt, the heartburn kicked in.  I just wanted to make it all stop!  Let me off this train.

I went to the doctor and we talked about what to do.  We talked about changing medicines but decided that making any changes right now would just aggravate things. 

We talked about how taking the medicine is difficult.  Having to take the medicine 1/2 hour before eating is difficult.  Then making sure to not take any other medicine for at least 1/2 hour.  Just like swimming.  I have to wait or I get cramps!  I feel like the whole day is arranged around taking some sort of medication.

Then because my stomach is so upset, I have to eat certain types of food: mashed potatoes, sorbet, toast, rice, baked potatoes, and broth.  Boring! 

The fatigue just comes over me so quickly!  I will have energy one moment and then next I will be unable to keep my eyes open and be able to sit up in a chair.  How is this possible?  How can someone be so tired? 

I think I am going to take a nap and reinvigorate myself.  Tomorrow is another day!  I am sure I will be stronger and less tired tomorrow. 

Look - A Flare

well today is a rough morning.  yesterday my hands started to ache, got real tired and i got a migraine.  we all know what that means... a flare has hit.  last night i woke  up four times because my hands hurt so much.  luckily the migraine has subsided.  now i just have to get through the day. i know it will be fine and eventually it will go away so that is what i am focusing on.  hey, i am  happy it is not hitting my feet this time.  i hate when it strikes my feet cause then i cant walk my dogs or walk at all without pain.  i apologize for any typos. i amposting from the blogger android app for the first time.

What Would You Tell Someone Newly Diagnosed?

I had dinner with some friends last night and they told me that a friend of theirs was just diagnosed with RA.  They asked me what I would tell someone who just got diagnosed.  That led me to think about what I would tell someone.  Here are the things I told them:

• Get a really good rheumatology doctor. Find a doctor who will spend time with you and talk to you.  If you can't find one, ask someone who has RA for a referral. If you don't know anyone, ask your primary physician.
• Find reliable information about RA and don't always rely on the internet.  Doing a Google search for RA will make your head spin!  There is SO much information out there about RA and autoimmune diseases. Some of it is good and some of it is BAD.  Ask your doctor, other people with RA, etc. for places to get reliable information.
• Find out everything you can about your medications.  I met someone recently who was put on Methotrexate and was never told they would be sun sensitive.  I also met someone who was put on 20 mg of Prednisone and no one told her that she would be hungry all the time and gain weight if she was not careful of what she ate.  I am just shocked.  I guess I should not be since I have been taking a thyroid medication for months and no one told me I should not be taking my Crohn's medication and Zyrtec at the same time!  No one told me I needed to wait 30 minutes before taking each of them.
• Find out about all the mediation assistance programs for the medications you are taking.  I never knew I could have been on an Enbrel co-pay assistance program long before I was on it. 
• You are your own medical advocate.  You know you better than any doctor, nurse or technician.  Don't let any medical professional bully you into anything that you aren't comfortable with.  Medical professionals are only humans who have done more schooling, they are not gods or magicians.  Don't let them talk down to you, don't let them run tests you are not comfortable with, and don't let them treat you in a disrespectful manner.  You are the customer and should be treated with respect.  If a doctor doesn't have time for you, find another one.  You have heard my story but to recap: I had a doctor years ago who told me (I was in my early 30's) that I was "getting older now" so I should just get used to feeling this way.  I switched doctors and it turned out I was B12 deficient and had RA.  Imagine if I had listened to him?  I knew something was wrong so I switched doctors.
• When you are ready, reach out.  You can reach out for support groups, exercise groups, chat groups, blogs, advocacy groups, etc.  Everybody has a different way to get involved or not get involved.  I also found for myself that at different times or stages, I was interested in different types of involvement.  In the beginning I was more interested with finding out everything I could about RA.  I tried a walk-a-thon.  Then my next stage was not really getting involved at all because I was so occupied in getting myself back on track and healthy.  Now I am in another stage because I am more stable (or just damned used to being sick...) and I am involved in blogging, advocacy work and I am trying to start using the Arthritis Foundation walking program.
• Help your family by giving them information about RA.  If you educate them, then you will know the information they are being given.  
• You will probably grieve for the life you thought you were going to have.   I am in a place where I celebrate the life I have now and I feel I am blessed because I no longer live a life that is safe.  If I had not gotten ill, I would have never quit my job and started my own business.  I will never be rich but I am happier and healthier.  I live life on my terms now.  Getting sick freed me from worrying about the small stuff like I used to.  My stress level is so much lower than it used to be.
• There will be really shitty days but there will be really good days too.  The hope is that the good days outweigh the crappy days.  I am happy with a 70/30 split!  I don't think I am there yet.  I think I am probably a 60/40 split right now between the RA and Crohn's. 

That is my list of what I would tell a person who is newly diagnosed.  What would you tell someone that just got diagnosed?  What did I forget?  What were your experiences?

By the way, I had a fabulous dinner with a my friend and her new boyfriend.  I love eating good food. I just wish my Crohn's would not kick in when I occasionally eat rich food.  Kinda makes the end of the evening not that great because I have to hurry home.  I had a great time with my friends!

12 Nice Things You Can Do

I can across this article on the CNN website that I really liked.  It is titled "12 Nice Things You Can Do For Someone In Pain" By Anne Harding.  I am including the list for you to read.

1. Asking what you can do to help out is great but take that extra step.
2. See what you can do to make their shots less painful.
3. Support their dietary choices.
4. Slow down and walk their speed.  Help them if they need assistance walking.
5. Help them by making the bed.
6. Don't ask them how you can help, just pitch in and help.
7. Learn and understand what you can about RA. Being informed is one of the best ways you can help.
8. Make them a meal on a day they may not be feeling well.
9. Help them with their kids on a day when they may not be feeling up to it.
10. Offer them a lift to the doctor/hospital/supermarket.
11. Assist them with opening jars, bottles, etc.
12. Heating pads, hot water bottles are a life saver.
13. Exercising together is key!

 I have a few more ideas:

1. Ask if you can walk their dog or walk their dog with them.  Or take care of their dog if they are in the hospital.
2. Help them with yard work.
3. If you know they are not feeling well, take out their garbage cans, shovel their walk, cut their lawn, etc.
4. Ask them if they would like a book from the library.

Do you have any ideas?  I know I am so thankful when my friends help me out.  I have asked my neighbors more than one time to drive me to the hospital when I was unable to drive myself.  I am eternally grateful for their friendship. 

World Arthritis Day 10-12-11

 This is my first year blogging for World Arthritis Day.  Actually it is the first year I am even aware there is a World Arthritis Day.  But I should have guessed since there is a day for almost anything, which we already established (see post What Will You Do For World Arthritis Day?) 


I will probably celebrate it by taking an Enbrel shot.  Toast to a long flare-free year!  Yahoo!

I thought about a topic to write about and came upon a recent discussion about some bonehead thing Dr. Phil said.  Now, usually I like Dr. Phil.  I find him entertaining with his little southern sayings and his down home country tidbits.  I like that he doesn't let people (especially men) get away with saying stupid things.  But even Dr. Phil has to realize he is not a physician.  He is a psychologist. I understand that Dr. Phil received his Doctor of Philosophy in clinical psychology in 1979 at the University of North Texas, where his dissertation was titled "Rheumatoid Arthritis: A Psychological Intervention".  I also read that the Dr. Phil Foundation raises funds to fight childhood obesity. 

With all that information it would seem that Dr. Phil has a rudimentary understanding of both rheumatoid arthritis and childhood obesity.

I guess that is why it was so shocking to hear Dr. Phil say on his show that juvenile obesity can cause may issues including arthritis.  Huh?

During the January 6th, 2011 episode "The 17 Day Diet Challenge", Dr. Phil stated:
“Changing your lifestyle and becoming healthier can prolong your life and help your children.”Seventy percent of children who are obese become obese adults," Dr. Phil says. "And we're seeing adult diseases show up in children; adult diabetes, rheumatoid arthritis, essential hypertension. These things are showing up in children — and we didn't see [this] a few generations ago — because of this obesity.”

Dr. Phil has now said the stupidest thing I have heard in a long time. 

Let's be clear: Obesity can cause a problem with osteoarthritis not rheumatoid arthritis.

Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.  It is an autoimmune disease, which means the body's immune system mistakenly attacks healthy tissue.

Osteoarthritis (OA) is the most common joint disorder.  Osteoarthritis is caused by 'wear and tear' on a joint.  Being overweight increases the risk of OA in the hip, knee, ankle, and foot joints.

I am not obese and if you knew me before I got ill, I was beyond thin.  I was even asked many times if I was anorexic, I was so naturally slender.  I come from a family of thin people.  I am heavier now because I have been on doses of Prednisone for years.  Now I gain weight just dreaming of food! 

This is a case of not believing all that you hear even if it is on a show with a title that has the word "Doctor" in it.  Dr. Phil needs to retract his statements that are wrong, misleading and insensitive.

Happy World Arthritis Day!

My numbers are: 120-31-(40-50)  That is: weight at onset of RA, age at onset of RA, and current age.

  

Back From Tahoe

We just spent a weekend in Tahoe.  We went to have a relaxing weekend.  It was pretty relaxing and almost boring.  It is not ski season and it is way too cold so swimming is out of the question.  Our one great adventure (besides the drive over the mountain) was going on a boat ride.

Tahoe Queen photo taken by Adrienne

The boat ride was very relaxing.  The vessel is a paddle boat and it is a smooth ride.  It was a really sunny day and had I brought a hat (yes, I had on sunscreen) I probably wouldn't get yelled at by my dermatologist.  I came back to the hotel with a really red face and a line where my bangs were.  Not an attractive look.  I was so relaxed on the boat I practically fell asleep.  I now know what babies like about cars.  I felt like a little baby being lulled to sleep.
The ride was also educational.  The ship's captain gives all these facts about history, Indian lore, and geology.  I would recommend the Tahoe Queen as a fun thing to do.  

Lake Tahoe photo taken by Adrienne

The scenery was incredible.  Every direction was a postcard.  I swear I took 2 rolls of film on the boat in just the first hour.  Yes, I still use a non-digital camera sometimes.  (Especially when my digital camera breaks and Nikon has not returned it to me yet.  Ergh...)  Tomorrow I will take my film in to develop and we will see what my photos look like.  I also need to take my camera in to be cleaned, that became obvious on vacation.  It was hard not to look at each view and take a photo.  I have no idea what I am going to do with all these photos of mountains!

The drive was the drive. What can I say?  On the way up, my right hip was cramping and quite painful.  On the way down, my right ankle was stiff and sore.  Both ways my hands hurt and felt like there were knives stuck in them.  That is to be expected when driving so I know that will be the case.  I went in the hot tub when we arrived in Tahoe.  At least I had a few days of very little to do in between the drives! 

Machines -6, Adrienne - 0

Well, my battle with machines has continued.  The score was Machines - 4, Adrienne - 0. When we last talked about machines, I think my brand new camera had just died a slow death, my car had an electrical problem and then the mirror was broken and my computer network went down.  The trend has continued.  Last week my adored 1940's Wedgewood oven began acting crazy.  I tried to make more of those awesome lemon cookies (I hate that my Myer lemon tree has sooo many lemons that they are almost rotting before I can use them up. But how many lemony things can you cook...) and they burned.  I barely had them in the oven for 5 minutes and they were burning on the edges.  Then I cooked this awesome leek/potato pie thing and I only had it in the oven for 15 minutes and the pie crust was burning.  The oven was turned to 350 but the temperature on the cheapo thermostat that I bought was around 500 degrees.  The kitchen was about 125 degrees and I was literally sweating.  After baking the pie thing I had to stick it in the microwave because the potato slices were still raw!

To make a long story long, I called the guy and he came and said the oven's thermostat died.  It lived a long life of 70 years! They don't make them like that anymore.  Three days later we had a new thermostat and a $400 bill.  But a working oven!!  Yeah.

I heard back that my camera would be fixed under warranty after some haggling.  It was only 37 days old when it died.  You would think this would be a no brainer, you would think...

M new laptop

Then the latest machine debocle occured.  My trusty laptop died two nights ago.  I turned it on and it did this check disk thing and then froze.  I turned it off.  I turned it back on and it did it again.  Then froze.  (Understand these check disk things take at least one hour and I am just sitting there watching it tick tick....)  Then I turned it on and realized I could stop the check disk thing and did.  Windows started up and it turned on.  I ran into my office and backed up my hard drive.  I did a little work and then turned it off.  The fatal blow!  I turned it back on and it would not bring windows back up.  It brought up the words you never want to see "System Recovery".  I turned it off and went to bed.  I texted my brother and told him to call me in the morning.  When he did, as I suspected, the news was not good.  He was a sport to help me out as we problem solved and then I decided to go buy another computer.  He talked to me in the store (what did I do before cellphones?) and then came home with my new baby!  For 24 hours I have been making recovery disks, installing software, and recovering data.  Loads of fun!  Hey if you ever want a mindless thing to do, have your computer stop working, buy a new one and make recovery disks, install software and recover data.  I now know why I could not be an IT person.  I could not sit there and watch the computer install or write to disk.  I know IT people do other things but this task is so tedious for me.  I want it to go faster.  I have a need for speed.

One thing I did find out was that my back up was not as good as I thought it was.  Some of the data I thought was getting backed up was not.  So I will have to go back to the drawing board on the back up situation!

Well, the machines are winning but the war is not over!  The score is now Machines - 6, Adrienne -0

Being Gracious

One thing I have had a hard time learning is to be gracious.  I am a very independent person.  I tend to do for myself.  Before Adrienne's Disease (AD) struck, I was really good at being the person who helped others and not the person who needed help.  Then AD happened and I suddenly found myself in a position of needing help on occasion.  I needed rides to the hospital on occasion (my partner doesn't drive) or someone to push me in a wheelchair.  It was hard for me to ask and even harder for me to be gracious when people offered.  I tend to say, "Oh, no thanks, I am fine" or "No thanks, you don't have to do that."  It is still my first reaction when my parents try to slip me some money (like some parents do).  I tell them "you don't need to do that, I don't need it."   If I do accept the help/money/assistance I feel guilty for putting the person out or for taking anything from them.

It is part of my evolution to learn to be gracious and just say Thank You.  When a neighbor offers to get me something from the store, instead of saying "no, that is okay, I can get it." I need to learn to say, "that is very sweet, thank  you.  I will pick something up for you next time!"  Then feel good about it. 

Gracious means characterized by charm, good taste, kindness, and generosity of spirit.  I need to work hard to have a generosity of spirit.  Just say thank you, appreciate the kindness of others and know that I will do what I can to help them some time in the future.  I may not be able to push their wheelchair but I am sure there will be other things I can do to help out.

So for now I will smile and say Thank You. 

Sleepin' With The Fishes

Friday night a friend and I watched The Godfather.  I know this will sound unbelievable but I had never seen The Godfather.  I had heard all about The Godfather and had heard all the lines but had never sat down and actually watched the whole movie.  So, we made a date and made some snacks and got comfortable and watched the loooong movie. 

There were two quotes from the movie that I feel compelled to discuss.

"Good health is the most important thing. More than success, more than money, more than power."

~Hyman Roth~

(Hyman Roth is a fictional character in The Godfather.  He was born Hyman Suchowsky.  He was a Jewish investor and a business partner of Vito Corleone, and later his son Michael.  Hyman Roth is based on mobster Meyer Lansky. )

What is money and power if you don't have your health?  Some of the most powerful people have been brought down because of poor health such as Fidel Castro.  Successful and wealthy people (think Steve Jobs) hide the fact that they are ill in order to keep stock prices up and not scare away stockholders.  How many of us have hid the fact that we are ill from bosses, friends and family?  Scared we may lose our jobs, not get promotions or be treated differently.

"I'm gonna make him an offer he can't refuse."

~Don Corleone~

Marlon Brando from Wikipedia

If you have  watched The Godfather or heard of the The Godfather, you have heard this quote! You probably even know Marlon Brando's accent and can say the line, "I'm gonna make you an offer you can't refuse."  I like to think of this line when I think of Adrienne's Disease.  I want to look Adrienne's Disease in the eye (you know, if it had an eye) and use my best Brando accent and say "I'm gonna make you an offer you can't refuse."  Then Adrienne's Disease goes away!  Runs away scared or I would have to shoot it or strangle it or drop a piano on it or put a dead horse head in it's bed.  I am up for the challenge. I am not sure I could do the horse head thing...but the rest, I could do it.  Adrienne's disease be gone!