Blogging for 30 Days (#NHBPM Day 3)

I have joined a group called Wego Health and they have a challenge for it's members to blog 30 posts in 30 days on health issues.  So I am taking that challenge!  They have given us a list of topics in case we get writers block.

I am also starting a new idea.  Since friends and family want to know how I am doing and I don't always want to write about it, I thought I would start using a emoticons to say if it is a

Good day



 Bad day

Just an okay day



The first two posts for 11/1 and 11/2 were to write the Title of My Future Book and My TV Show.  Skipping past those for right now, I am going right to 11/3 Write a Letter to My 18 Year Self.

The things I would tell my 18 year old self would be:

• things will get better
• life will get on track, just have patience
• do the things you want to now (because you will get RA and you might not be able to them later on!)
• you will move far away
•  college will end but not in four years
• believe it or not you will go to graduate school 
• you will get married, divorced and find a partner (there's a twist you probably didn't see coming)
• there will be these things called Ipods, Iphones, Ipads (funny sounding, I know)
• everyone will stop using LPs, then CDs and then MP3s
• Schools will stop teaching cursive writing, stop having gym, art and music classes
• you will own that red convertible

 What would you tell your 18 year old self?  Share your story.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J 

The Funny Side Of Crohn's (#NHBPM Day 2)

Today I saw my gastroenterologist.  There is a sentence I really didn't think I would ever say or at least wouldn't say until I was in my 80s.  I am really lucky that I get visit my gastroenterologist about every three months.  Talking about bowel movements and gas, what fun!  Today we discussed what my stool looked like.  She asked the question like she was asking me how my vacation was.  It took me a bit off guard.  I actually stuttered when I answered.  What do you say?  Solid, watery, regular....  

For a person with Crohn's what is regular?  I am lucky if I only have to poop (I prefer the term poop.  I use it for my dogs and for myself.) three times a day.  One lovely side effect of Crohn's is having to poop many times a day.  Some days it is more and some days less.  

Sometimes my poop is really messy and sometimes it is not.  I always keep those wet wipes handy.  Last time I was at the doctor's office I asked about having a sore tush (another one of my fav terms) and she prescribed Desitin.  You know for babies who have a rash on their tushies.  Now I am in my mid-life and I am using Desitin on my tush.  I guess it is true, we grow old and at a certain point, we start to go backward and become a baby again.  I guess I am on my way.

Oh, I haven't talked about food and Crohn's.  Here is a fun topic.  If I cook my own food I am usually fine but if we eat out at a restaurant, oh no.  Sometimes the rich food at restaurants goes right through me.  It is helpful if I make it home first!  One time we ate out and then decided to go to a bar.  I was at the bar for less than one hour when I had an OH NO moment.  I certainly was not going into a bar bathroom to have a Crohn's attack.  Crohn's attacks are really the type of thing you want to have in your home bathroom.  So I caught a taxi home and just made it to a bathroom just in time.  Phew!

My doctor said I don't have to be scoped (colonoscopy and/or endoscopy) and I don't have to go back for six months!  Yeah!  As much as I enjoy being cleaned out with a bottle washer, I think there should be a limit on how often one person can get scoped, like every 10 years.  Ha ha.  Okay every 5 years.

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!