Saturday, July 30, 2011

Made It To The Shore. The Jersey Shore, That Is!

After a horrendous flight and a visit with Brenda's mother, we are finally at our intended destination, The Jersey Shore.  I say the flight was horrendous not because it was delayed or bumpy but because it was hot.  The flight was just plain hot.  So hot it was uncomfortable and I could not sleep.  Oh, did I forget to mention it was a red eye?!  I tossed, I turned (as much as one can in an airplane seat) and I tried to catch some "red eye".  All to no avail.  Then at 5 AM Brenda didn't feel well and she needed to jump up immediately.  I grabbed our stuff and got up but my glasses ended up on the seat where they, wait for it... got sat on.  This added a trip to the eye glass store to fix my bent and broken glasses to our already packed itinerary. 

After a few days visiting Brenda's family, we are now at The Jersey Shore.  Not that part of The Jersey Shore!  There are other places along The Jersey Shore beside Seaside Heights where they film that stupid but sometimes entertaining reality series The Jersey Shore.  We are in a much more tame and family-oriented part of The Jersey Shore.  I am here with 26 of my family members for a family reunion. The trick after my last vacation is to stay healthy.

How to stay healthy at The Shore you ask?  I am glad you asked!  Follow these steps:
  1. Eat right.  For me that means eat healthy.  I made sure I have my protein and balanced meals by bringing my own food.
  2. Getting enough rest.  I haven't done a very good job of that so far but today when we arrived I made sure to take a nap after 2.5 hours of driving in bumper to bumper traffic.
  3. Be careful in the sun.  Keep sunscreen on at all times. Wear a hat.  Be careful about how many hours I spend in the sun.  I know that if I get sunburned I get sick, so don't over do it.
  4. Don't get stressed out.  That goes without saying.
  5. Don't do more than I should.  This is the one I struggle with all the time.  I don't like to feel like I can't do something so I push myself.  I have to stop when I have had enough.  I also need to listen to Brenda when she says I have had enough.
This is my list to live by at The Jersey Shore.

Monday, July 25, 2011

Getting Ready for The Trip

Up, up and away!
Two days until the trip back East!  I am trying to get plenty of sleep and eat well so I don't flare while I travel.  The planning for this trip is going well.  I am shipping food to myself so I can eat what I need.  I am packing all my medication with Dr's letters so the TSA doesn't have any reason to stop me.  Taking all my medication regularly.  Downloaded some good, relaxing music, bringing a good book and some fun movies to entertain.  Bringing some good-for-me snacks to eat on the plane.  Printed the directions to my next location in order to lower stress when we land.  Wearing loose, layered clothing so I will be comfortable and warm.  Buying plenty of water so I will stay hydrated.  I shipped some stuff ahead of time so I don't have to carry too much.  Calm, relaxing travel...

Friday, July 22, 2011

First Ambassador Assignment

Today I completed my first Arthritis Foundation Ambassador assignment.  I  looked up the Health Legislative Assistant for my two Senators and my Representative.  Then once I had all the information I called their DC office and asked to speak to the Health Legislative Assistant.  Like they took my call!  Once I got their voice mail, I left my pre-arranged message.  Hi my name is Adrienne XX and I live in XX.  I have arthritis and I care about health funding... 

It was easy and fun.  Then after I made the calls I went online and reported what happened.  That way the AF knows that I completed the assignment and tracked what occurred.  Next week is the meeting to get the next assignment.  If this deficit thing ever gets settled, I will try to attend a local town hall meeting.

I think Washington should do the same thing they did in California.  They told the elected officials they would not get paid until they sorted out the budget problems.  Let me tell you, that problem got sorted out very quickly.  Tell the DC politicians that they can't leave the city and won't get paid and no health care, fancy gym and no other perks until the deficit problem is solved.  See how fast they move to solve this problem!

Wednesday, July 20, 2011

Tuesday, July 19, 2011

Why Don't I Take My Medication?

Each and every week I have to give myself an Enbrel shot.  Every morning I have to take two pills.  Every night I have to take at least seven pills. I am also supposed to give myself a B12 shot once a week.  When my Crohn's is acting up I take two pills four times a day and then get to grind up and take two more pills three times a day.  If you add up what I am supposed to take, it barely leaves me time to do anything else!  This doesn't include various other pills and shots if other "issues" come along. 

Sometimes I am really bad at taking my medication, like today.  I was supposed to be taking my Crohn's medication but today I have been lazy so now I have terrible heartburn.  Hey, the medication is a pain in the neck!  Who can remember to crush up and take medication 1/2 hour before they eat?  It is a chalky substance that I mix with water and drink down.  Yummy!  If I forget to take it 1/2 hour before I eat, I have to remember to take it 2 hours after I eat.  Convenient!  Who can remember that?  I only remember to take it if I already have heartburn but then it is too late!

Recently I read an article that talks about the Medication Rebellion titled Skipping your Meds? in Arthritis Today Magazine (March/April 2011).  It points out the three barriers to taking medication consistently:
  1. Cost.  The cost of the medication dictates if patient will take it.  Higher the cost, the less the patient takes the medication.
  2. Complexity of the medication regimen.  Who wants to do a multi-step process to take a medication?
  3. Beliefs about medication.  If a patient feels the medication is not doing anything for them or worries about side effects, they may not take the medication.
As M. Robin DiMatteo, Distinguished Professor of Psychology at the University of California, Riverside, was quoted, "People get tired of having a chronic disease. Maintenance and management take a lot of energy, and it keeps reminding you that you have the disease."

As I know (and find out with each bout of heartburn) skipping my medication is not good for me.  One way I have overcome forgetting taking my Enbrel is using a gimmick.  I watch TV on Sunday nights so I have a plan that during the 9 PM show I take the medication out of the refrigerator, then during the 10 PM show I give myself the shot.  I guess need to have a gimmick for taking the Crohn's medication.  I need to conquer my Medication Rebellion. 

Sunday, July 17, 2011

Traveling with Crohn's Disease

Up up and away!
Less than two weeks until we go to our family reunion.  Who likes traveling?  With those small airplane seats, going through security, and changing planes?  Traveling with arthritis and Crohn's makes a vacation that much more exciting!  The planning has begun to make sure my Crohn's disease doesn't act up during the fun.  On my last vacation I had a horrible bout of Crohn's that had me down for a whole day and lingered for about 4 days.  I want to try and avoid it this time.  Who wants to share a condo with someone who has stomach issues?!  I don't want to be hanging around the condo when everyone else is out boating and jet skiing.

One way to avoid having those stomach "issues" is to eat the same food that you eat at home and cook them the same way too.  I know this means I am missing the culinary extravaganza but if it means I get to join in more of the fun, I will eat whatever I have to.

So, here is the plan.  I am shipping myself the food I know I can eat and that I can't readily get on the East Coast.  If I have the food that I am used to, I will lower the chances of getting ill.  I have an itinerary of the food plan for the group and I can bring "like" foods for myself.  (Oh, yeah, I am a vegetarian and can't eat a long, long list of foods which makes me SO much harder to cook for.  Basically, I am that pain-in-the-neck to cook for!) 

Happy Tummy!
On barbeque night, I can have a garden burger (shipped from home) with veggie sides that I can buy at a local store.  On Italian night I can make myself a goat cheese (shipped from home) pizza that I have made before and doesn't bother me.  The night the family goes to the seafood place, I can bring my cooked tofu (shipped from home) with me and order sides at the restaurant. I can bring the new "cheese" that is made from tapioca and make myself a grilled "cheese" sandwich (also shipped from home).  This way I get the protein I need and eat the foods I can eat.  My tummy will be happy and I will have the energy I need to swim, boat and jet ski to my hearts content.  And not spend the whole time stuck in the condo!

Saturday, July 16, 2011

I became an Arthritis Ambassador

This week I signed up to become an Arthritis Ambassador for the Arthritis Foundation.  Arthritis Ambassadors are volunteers committed to taking part in the democratic process and serve as liaisons between the Arthritis Foundation and their Congressional District’s Representative.  Every other month I am asked to listen to a conference call and then asked to do a special project "to advance the Foundation's advocacy efforts and to share their story with important decision makers."   I am also encouraged to attend the annual Advocacy Summit in Washington, DC at the end of February.

This month I have my pick of two assignments: 1) call my three Health Legislative Assistants (one Representative and two Senators) and request support for arthritis research in the FY 2012 budget or 2) either attend a town hall meeting or schedule a district meeting with my Representative.  Since we all know our Representatives are still in DC dealing with that debt issue, I will be calling my Health Legislative Assistants this week. 

Some of the tasks I may be asked to do are: Contacting my members of Congress, recruiting new advocates, and writing letters to local newspapers.

I am really excited to be a part of advocacy work again.  I loved it when I did advocacy work with Mobilization Against AIDS.  I always felt like I was working directly toward something.  Telling my story. 

If there are any activities that are easy to do, like the e-letter earlier on my blog, I will post them here for folks to participate if they want to. 

Wednesday, July 13, 2011

I cried and she said she was sorry

Today was one of those days where I just had to cry.  The day is going along well.  I had lots of work to do (finally) and I am getting things done for my impending vacation.  Then the phone rings...  Brenda says it is Amy (the names have been changed to protect the not-so-innocent) from The-Company-Who-Must-Not-Be-Named.  Amy told me that the company where I used to work's broker has offered me a Kaiser plan for one month (7/1/11-8/1/11). 

RECAP: If you you have been reading this blog you may remember, my Cobra coverage is for 36 months.  Those 36 months run from 8/1/08 through 8/1/11.  My health insurance from The-Company-Who-Must-Not-Be-Named was through the company I used to work for.  The company I used to work for went out of business or dropped their medical coverage on or around 1/1/11.  That meant I lost my health coverage.  The-Company-Who-Must-Not-Be-Named tried to retroactively cancel me (twice) but ended up keeping me on until 7/1/11. Whether my complaint to the Department of Insurance had anything to do with it, we will never know.  Now you are caught up to today's events.

So Amy tells me over the phone that my coverage with The-Company-Who-Must-Not-Be-Named is going to retroactively be cancelled YET AGAIN back to 7/1/11.  I have been offered the one month of Kaiser coverage from 7/1/11 - 8/1/11 that I have to take.  Then I can go back with The-Company-Who-Must-Not-Be-Named on 8/1/11.  That begin a RANT that poor Amy has never before heard:
I can't believe they are doing this to me again.  How many times are you going to cancel me?  I don't want to go on Kaiser for one month, my doctor's aren't on the Kaiser plan.  It is the 13th of the month already!  So for two weeks I have to go on to Kaiser and then what?  Why do you keep doing this to me? 
Then I begin to sob uncontrollably!  I am ranting and crying into the phone!  It was a sight to see.  Poor Brenda is standing behind me rubbing my shoulders.  
I have a chronic disease and you people keep cancelling my insurance. How many times are you going to cancel my insurance?   Do you know how many times The-Company-Who-Must-Not-Be-Named has cancelled my insurance?  This is unbelievable! Now you want me to go onto Kaiser for two weeks, where I have no doctor's and then switch back in two weeks?  For what?  I was approved already!  Now you are going to retro cancel me again?!  I don't mean to take this all out on you Amy, I am just so mad!  Why do you keep doing this to me?
Kauai 2004
 At this point Amy is trying to calm me down.  She is apologizing to me!  She says I understand.  I will get my boss to look into it.  I tell her thank you between the sobs. We hang up.  In less than 10 minutes, the phone rings, it is Amy.  She apologizes to me for upsetting me and says I have nothing to worry about.  She spoke to her boss and I don't have to go onto a Kaiser plan.  She said "I have looked into your file and you have been through enough.  We don't need to put you through anymore."  I thanked her and said when you have a chronic disease, it is hard enough to get insurance and to keep it, you will fight tooth and nail.  I need this insurance.  She said don't worry you have the insurance.

Some one told me once to just cry but I thought the tears wouldn't come with the Sjogren's.  They came today!  Like a waterfall!  So, how was your day?

Sunday, July 10, 2011

Limping Along

The Very Pretty Brace
When we were in Palm Desert in April, I injured my ankle.  At first I thought I broke it or fractured it but then it became clear I torn/injured the ligament.  I was given a really attractive soft brace to wear for 8-10 weeks.  Well, it has now been 13 weeks and still I am wearing the brace.  I don't have the same pain I had when I originally injured it but it still hurts if I turn my ankle the wrong way or if I walk on it too much.  I have to wear my ugliest pair of sneakers because those are the only shoes that will fit over the brace.  My little dog, Lucky, keeps chewing on the sneakers so they keep looking worse and worse.  You can see them in the background of the photo above.

One side effect of RA and the RA medications is not healing quickly.  It takes me a LONG time to heal when I get a cut or I get sick.  I have been told I am not allowed to have surgery of any kind without my primary doctor being notified in advance.  My last surgery was appendicitis and I ended up getting a secondary infection and ended up back in the hospital.  Two years ago I got the flu and it turned into pneumonia really fast.  So, I guess this torn ligament is taking it's time to heal.  If it takes regular folks 8-10 weeks to heal, it will take me 16-20 weeks to heal.  Just in time for the next excursion to New Jersey!

Chocolate Chip Cookies...Yum!

I don't know what I was thinking last night.  Yesterday I bought a mix to make chocolate chip cookies.  My days of making cookies from scratch are long gone.  Too much time, too many ingredients, you get the picture.  So, I bought the mix, remembered to leave out the butter to get soft and rescued one egg from my partner who was about to hard boil it.  I was set.  I put the softened butter in the bowl with the egg.  For some insane reason I didn't get out the Kitchen Aid and thought I would be able to stir the two together with a spoon.  Most of you right now are saying to yourself "Okay, what is the problem."  I have RA!  About one and a half minutes into stirring my hands were so sore and stiff, I could not stir anymore.  My partner was asleep and I had this bowl full of lumps of butter and egg goo.  Lovely!  No where near the "creamy mixture" I was supposed to have.  About 15 minutes later, after stops and starts, I finished stirring.  I knew it was not going to get any better or "creamier".  I added in the dry mixture and stirred some more.  And more.  And more.  I felt like I was kneading dough not baking cookies! When I finally got it all mixed as well as I could, I scooped it into little balls, put those balls on the baking sheet and popped them in the oven.  Guess what? 
My Semi-homemade Chocolate Chip Cookies
The cookies tasted fine.  I had six of them before I went to bed and didn't feel the least bit guilty!  I must have worked off 100 calories making the stupid things!   Yummy ummy gooey-ness!

Wednesday, July 6, 2011

Rethinking Medical Care

Today we got our new insurance cards from The-Company-Who-Must-Not-Be-Named!  It is interesting how I am rethinking healthcare now that I have a $4,000 deductible.  The-Company-Who-Must-Not-Be-Named has this great tool on their website that keeps track of all claims and tells me when I hit the $4,000 limit.

I am looking at healthcare differently now that I have to come up with that money.  I never thought about how much a doctor visit costs. Who gets a bill from their doctor or even knows how much it costs to see a doctor these days?  Or how much it costs to get an x-ray?  If you have HMO insurance,  you probably don't know how much these things cost.  I know how much some of my prescriptions cost but not all of them.  It was shocking to find out that one of my Crohn's medications costs $700 for 30-days of pills.  What are they making it out of Caviar?  Liquid Gold?  The best part is that the mediation gives me heartburn so I have to take another medication to get rid of the heartburn!  That medication is not covered by my insurance so my doctor's office takes pity on me and gives me free samples.  And don't even bring up my Enbrel.  It costs somewhere between $700 - $2,000 each month depending on the market value.  In some ways, that is liquid gold!

I blame the HMO's for not telling us how much things cost.  If HMOs told people how much doctor visits, x-rays, and tests cost, people would be more informed and understand more clearly what their insurance is worth.  Last year I had a gastrointestinal issue where I had to stay in the hospital overnight.  That one night stay cost a whopping $17,000.  Who knew?   Now I will know!

Monday, July 4, 2011


HAPPY 4TH OF JULY!  Fireworks are going off all around; most illegal.  Friends came over to hang out. Good food.  It was a nice day.