Dear Mr. President,

Juvenile Arthritis effects 300,000 children in the US.  I think it is hard for me to have RA but I can't imagine having arthritis at such a young age when all I want to do is go outside  and play or doing something fun with my friends and I can't because I don't feel well.  One child says she has to swallow 30 pills each day and you know these are not small pills.  Hey, even I have a hard time some days swallowing all those pills!  It is tough for an adult but for a child and their family that must be devastating.

The Arthritis Foundation put together this video message to President Obama asking him to start taking about arthritis.  Please check it out.

Click Ask Obama to ask the President to make arthritis a national priority.

Now, The Ugly Side Of RA

There are sides of RA that are not so pretty and there are sides of RA that are really ugly.  In this post I am going to share one part that is really ugly.  **Warning: Parents with small children may want to have them leave the room.   If you have a weak stomach or a heart condition, this post may not be safe for you to read.**

When I got RA, my immune system went haywire, then the doctors threw in some drugs that suppressed my immune system and that made my body go even more haywire.  I bruise if you even look at me hard, I can twist an ankle just by walking, I can have sore gums from eating popcorn and I get infections from hangnails.

But the absolute worse thing that happened is warts.  Warts are disgusting and horrible.  I have them and I can't get rid of them.  I have been trying for so long my dermatologist and I are on a first name basis.  I bring vacation photos to show her staff.  I have started to expect a birthday card from them!  I have tried almost every known medical and holistic way to rid myself of the warts to no avail.  I have tried duct tape, various medicines, and liquid nitrogen. Despite using all these methods, the warts are able to party on down, grow and spread.  Being on Enbrel, which suppresses my immune system, allows the warts the ability to thrive in this environment.

photo from Wikipedia

Warts are caused by a single virus, of which there is many strains. This virus is the human papillomavirus or hpv. This virus is one of the most prevalent infections in the world – it affects approximately 40% of all humans. Because of the warts that result from HPV, it is often times referred to as “the wart virus”.  Plantar’s warts come from type 1, in the plantar area of the foot.  Warts are actual viruses living IN the skin. Blood vessels feed the wart, and therefore the virus itself, keeping it alive and present. This is the reason that wart removal can often times be very painful - the wart is attached to capillaries and embedded in the skin. If you look at your wart, you will probably see little black dots inside. Those black dots are actually the clotted blood vessels feeding your wart. Yummmmm.

Now you might ask, "Why don't you have them surgically removed?"  Great question.  That posses a whole other problem for those of us using Enbrel.  Enbrel opens it's users up to infections.  I am unusually susceptible to infections.  Any type of infection.  Therefore surgery, any type of surgery, is out of the question unless it is life threatening.

 So, I am stuck visiting my dermatologist once a month and getting the warts burned off until my immune system suddenly wakes up and decides to fight the good fight.  Then I will be wart free!  Yay!  Until then, I will continue to hide my feet.

Some Days I Dislike My Hands

I am pretty lucky.  My hands are in pretty good shape considering I have RA.  I don't have visible joint damage and most days I don't have horrible swelling.  What I do have is a problem holding items and opening things.  I get frustrated that I drop things constantly.  I will be in the shower and drop my razor, then get out of the shower and drop my brush and the day just continues like that.  I drop pens, forks, knives, keys, pills, remotes, phones, and the list goes on.  I also have a hard time opening jars, bottles, cans, etc. 

I find it frustrating when I am alone and I can't get a bottle open or I can't turn the can opener which means I can't get the can open.  I really depend on my partner to help me with these tasks.  When my hands first started getting stiff, I would get so frustrated, I would cry.  But then I realized that was getting me nowhere.  I have to let go and ask for help. Meanwhile, bending over to pick things up has now become part of my workout routine! 

I know how my hands will most likely look in the not to distant future so I try to look at them while they still look nice. I know that sounds vain but I want my hands to stay pretty.  And stay functional!  I try hard to love my hands everyday!

What Will You Do For World Arthritis Day?

Did you know that there was a World Arthritis Day?  I didn't know.  But I guess I should have known since there is a day for everything, isn't there?  February 11th - Don't Cry Over Spilled Milk Day, June 4th - Hug Your Cat Day, October 14th - Be Bald and Free Day are just some examples!  My all time favorite is September 19th - Talk Like a Pirate Day.  Argh, Matey, we're going to make you walk the plank!  Bizarre and Wacky Holidays! 

World Arthritis Day is October 12th, 2011. This year the theme is Move To Improve.  The site is packed with ideas how to get up and exercise.  There is also a booklet, titled Arthritis and Exercise, that has beginner exercises. 

What am I going to do on October 12th, you ask?  I have no plans at the moment.  I have been trying to walk since the weather is nice. So I guess I will try to move to improve and do some walking. 

I researched and found out October 12th is also Moment of Frustration Day, Cookbook Launch Day, Emergency Nurses Day,  and Old Farmers Day.  I think having World Arthritis Day and Moment of Frustration Day on the same day is hysterical mostly because I find dealing with arthritis quite frustrating!

I will continue the week: Thursday, October 13th with International Skeptics Day because I am a skeptic, Friday, October 14th with National Dessert Day, when I will eat dessert before my meals because life is short (or so they say!) and end the week with October 15th Sweetest Day on a date with my honey!

Simplify the Process and Get the Medication You Need

We've all gone through the process...
The doctor says this prescription drug will help your arthritis and give you pain relief, but in order to access the medication you must obtain prior authorization from your insurance company. Many times prior authorization can take days, sometimes weeks and you are without the medication you need. 

There is hope. California State Senator Ed Hernandez is sponsoring a bill (SB 866) that urges a uniform authorization form. If signed by the Governor, this bill will speed up and simplify the approval process for the medication you need. You don't need to be from California to sign the petition. 

Taking medication can be tricky - obtaining it shouldn't be.

Pain In My A****

I have a stiffness in a new joint, my ANKLES.  I have had pain in my ankles before but not this continuous stiffness.  It feels like my legs are fused to my feet.  For normal walking it doesn't bother me but walking downstairs is really difficult.  I sound like Herman Munster when I am just walking down the stairs!

Medicine alone will not always help joint issues so I researched other options that can help during this flare.  The Arthritis Today website has an article "51 Ways to Be Good to Your Joints" about joint health.  Below are a few of best tips for me:

• Resolve to reduce. Lose weight because every pound means more pressure on your knees and ankles.
• Sneak in healthy food.  Make healthy foods easy and accessible.
• Stttrrreeetttccchhh.  Take stretch breaks throughout the day.
•  Develop abs of steel.  Develop a strong core and improve strength and balance.
• Walk Fido.  Walking pups means getting up and getting some exercise!
• Don't stomp your feet.  Pounding exercises can be hard on joints.
• Soak it up.  Take a warm bath to soothe those muscles and joints.
• Do the write thing.  Writing down your feelings and frustrations can be therapeutic. 

Make a plan and keep to the plan!  Then see how I feel in a week.  Make those Herman Munster ankles go away!

Overwhelming Fatigue

For the last couple of weeks, I have been having this overwhelming fatigue in the afternoons.  I will be sitting at my computer and all of a sudden my arms feel like they weigh hundreds of pounds, my eyelids cannot stay open and I cannot concentrate on anything.  I feel almost helpless to fight it.  The only action I can take is inaction.  I can only sleep.  I take a short nap.  Little by little the fog clears and I can get back into the game of life.

This fatigue is aggravating.  I am not normally a person who takes naps.  I find it stressful.  If I am so tired, I should just go to sleep earlier.  I just can't seem to stay awake in the afternoon.  I am lucky that I work for myself and can take a nap if I absolutely have to.  I just hope this bout with fatigue passes quickly.

Arthritis Today magazine states that 95% of rheumatoid arthritis sufferers report having fatigue.  At least I am in good company!

Arthritis Today magazine has some great tips on dealing with the fatigue:
1. figure out the reason for the fatigue.
2. keep a fatigue diary.
3. ask your doctor how the fatigue can be treated.
4. figure out ways to cope with the fatigue.
5. make sure to get a good night's sleep.
6. deal with limitations to your energy.
7. ask for help!

If you have fatigue, figure out the reasons and talk to your doctor.  Also, know that if you have RA, you will have fatigue at certain times.  Prepare yourself for those times so you are ready for them.  It doesn't mean you won't despise those times, but at least you are prepared for them and they are not a surprise.

I have a plan when the fatigue gets really bad.  I have a bunch of movies ready for those times when I can't get off the couch, my partner knows she will have to take care of the dogs and all activities we have planned will most likely have to be canceled.  But on the good days, we try to make up for the bad days!  We know the good days will come again soon!!  Hey, the sun is finally shining where we are, so life is good!

The Machines Are Against Me

Ever feel like machines are against us?  Today is just capping off the insane week I had.  First I took my car in to get some electrical problem fixed and they said we need to keep it for three days while they wait for the part to come in.  The angel on my shoulder said "Don't leave it." But I ignored that angel (as we often do) and left it. Never again! Then the next day my computer network (I work from home) decided to quit working. I spent the whole day trying to fix it (including taking two buses to and from Best Buy) to buy a part that I ultimately didn't need because I fixed myself at the end of the day.  Then when I went to pick up my car, the drivers side mirror was broken.  Not the actual mirror but the whole mirror housing was BROKEN and they didn't point it out to me.  I had to notice it myself.  Didn't the guy who drove the car out to me notice the broken mirror?  No.  After yelling about the broken mirror and them promising to make it right with a new one, I calmed down.  At least I got the car back for the weekend; although with a broken mirror...

Lemon Pie Cookies

I decided the problems are over, right, they come in threes! I decided to make cookies using the Meyer lemons from my backyard.  I took some to my neighbor who's roommate recently passed away.  Turns out it was his birthday!  I had no idea but wasn't that happenstance! 

While making the cookies, I found a new way to zest a lemon.  I am not sure if you have a problem zesting lemons but I do.  I can't hold onto the lemon with my stiff hands.  The lemon slips out of my hands. This time I cut the lemon in half first, juiced it and then zested it.  That way my thumb had a place to go and have leverage.  Made it much easier!  I also used my grandmothers juicer (pictured right) which made it easier to get the juice.  Elegant and effortless!

Then this morning my bad luck with machines has struck again!  I took out my brand new camera to download the photos from the children's party we went to yesterday.  It doesn't work.  The camera is only one month old!  At least this time I got my pictures off before it died.  Oh, I guess I never wrote this but during my last vacation, my camera died and I lost over 100 photos of our vacation.  I probably didn't write about it because I was so depressed.  Luckily I have the greatest family and everyone sent me their photos so I feel like I have my photos back! 

This trend can not continue!  How do I make machines love me again?  Is there a throne to the machine goddess where I can put some oil, tighten some screws or remove some dust bunnies? Come on, there has to be something I can do to turn this around....Any one have some advise??

Ask Obama: Make Arthritis a National Priority

• Arthritis affects an estimated 50 million (one in five) American adults and 300,000 children and is the nation’s leading cause of disability.
• Without appropriate interventions, the number of Americans with arthritis is expected to increase to 67 million Americans within the next 20 years.

Why then is our nation’s leader failing to even mention this disease?

Please send this letter to President Obama urging him to make arthritis a national priority.

Learn more about this issue.

Increased Risk Of Skin Cancer?

How many of us use Enbrel, Humira, Cimzia, Remicade, and Simponi?  These drugs inhibit a natural protein called tumor necrosis factor alpha (TNFa). TNF inhibitors protect the body from infections and cancers.  A 2006 report in the Journal of the American Medical Association found an increased risk of cancer and serious infections in people using anti-TNF drugs.

A recent analysis of 21 studies conducted between 1998 and 2010, as well as eight study summaries that had been presented at research conferences during the same time frame showed no increase in other cancers, but appear to show an increase in the risk of developing skin cancer. All the studies focused on the potential for cancer risk in association with the use of standard TNF inhibitors. 

“But while we can perhaps now put aside our worries about other types of cancers, this does give us some indication that we need to be vigilant when it comes to skin cancer,” Dr. W. Hayes Wilson, chief of rheumatology at Piedmont Hospital in Atlanta added. “And we certainly need to have a high index of suspicion if a patient has a skin abnormality, and make certain that they see their dermatologist.”

The Mariette study appears in the Sept. 8 online issue of the Annals of Rheumatic Diseases.

Read the full story at WebMD or Health.com

Personal Comments
I know I have to be diligent to keep applying sunscreen.  My dear friend recently had some skin cancer removed and it is scary.  When I was taking Methotrexate I was SO sun sensitive I could not go into the sun without being covered up and "lubed up"with sunscreen for the two days following taking the medicine .  If I didn't, I would sizzle like a french fry!  My dermatologist would scream at me. 

It is an interesting dilemma for me.  I have blood tests where I have low Vitamin D levels.  The best way to get Vitamin D is to go into the sun.  Sunscreen blocks your skin from absorbing Vitamin D.  Since I work from home I try to sit in the sun for short periods of time so I can get some Vitamin D but don't get skin cancer.  It is a fine balance.  Skin cancer vs. osteoporosis.

Please be vigilant with that sunscreen and keep the skin cancer away!

Visit With The Doctor

I went to see the doctor and no endoscopy yet!  She gave me a stern warning that if the new medication didn't work the next step would be scoping me up AND down.  Doesn't that sound like fun?!  If the new medication fails, she will have to go back in to see if anything new has gone wrong.  The new medication is liquid Carafate and a lovely shade of neon pink.  I have to take it four times a day on an empty stomach plus I have to take one Aciphex each day.  And I have to take Pentasa four times a day. 

So fingers crossed that I feel better in the next week because as much as I love a tube down my throat, I really think once in a life time is plenty!  The thought of having another colonoscopy is really not amusing.  It is good news for now.

Remembering 9/11

Today is a day of remembrance.  Discussions of  "where were you on 9/11?"  Such a tough day.

Let there be peace and tolerance.

Friends With Picasso

Yesterday I went to see a Picasso exhibit with my friends (I will call them A and B).  A is 78 and B is a senior and I am guessing just over the senior cusp.  They were a blast.  If you have never seen Picasso's work, you really should.  It is quite  fun to see and if you are not a fine arts connoisseur, go with someone who has a great sense of humor.  Picasso is fun to view with laughter.  I have not had such a hearty belly laugh in a great while.  I am sure Picasso would not be happy to hear we were hysterical but come on, ladies with two heads and boobies all over the place painted green, at a certain point it becomes funny.  There were some young kids, probably around 11 years old,  in front of us through part of it.  They must have been from a home school collective.  They were amazing because they had studied the paintings at home and knew some of the names.   I am not sure I knew who Picasso was at 11 years old. 

Okay, I have gotten off my point.  The point I was getting at was that I did better at this museum visit than my last visit but I still had to sit down two times to rest.  I had to sit down when my senior buddies were raring to go.  Out walked by a 78 year old woman!  I can take as my victory that I was able to:

1. walk and not stop more often to rest
2. see the whole exhibit and not have to stop and miss the rest of the exhibit
3. not use a wheelchair!
4. go see the exhibit at all!

 Overall, the day was very nice.  A little art, a little bit of time with friends, a little lunch, then home to do a little work. Overall a good day!

On a side note: I went to give myself my Enbrel shot on Thursday night and something happened that never happened before.  I give myself the free hand injection shot not the sure click or the pre-filled injection.  As I was filling the syringes, the liquid part of the syringe didn't screw into the vial adapter that has the powder in it all the way.  The liquid squirted out and dripped out all over so I didn't have anything to inject.  I thought it was screwed in all the way.  Needless to say, I only had one injection on Thursday night and one $700 shower of Enbrel down the front of me.  Nice!

A Burnin' Deep In My Heart

For the last few weeks I have had the most horrible acid reflux/heart burn.  I have had heart burn before, that was part of the reason I had that pleasant endoscopy last year.  But I have not had heart burn like this before.  This is HEART BURN!  It takes my breath away and would make me cry (if only I could make tears!)  It should really be called "knife in my chest" but that isn't as catchy as heart burn.  I am even taking this horrible medicine three to four times a day.  Here is how the medicine has to be taken since I can't swallow the pills:  One half hour before a meal OR 2 hours after a meal I crush up two pills and put them in water.  I drink the water/pill concoction as fast as I can (because it tastes like chalk.)  Doesn't that sound appetizing?

I don't know what is going on because I am taking the medicine but still getting the acid reflux.  I have a doctor's appointment on Monday and will ask the doctor what is going on.  Keep your fingers crossed this doesn't mean another endoscopy!

If you have acid reflux, here are some helpful suggestions to keep from having it reoccur.

- There are certain foods to avoid:

• Chocolate
• Peppermint
• Caffeinated beverages
• Alcohol
• Fatty foods
• Greasy or fried foods
• Citrus fruits and juices
• Tomatoes and tomato-based products
• Chili peppers
• Black pepper

- Avoid large meals, stick to smaller meals.  Don't eat to quickly.
- Avoid high-fat foods.
- Avoid spicy foods.
- Stay away from alcohol.
- After you eat, don't smoke.
- After you eat, chew some gum.  Chewing gum stimulates saliva production that neutralizes stomach acid.
- After meals, drink water.  A cup of lukewarm water or herbal tea can flush out stomach acid.

Now you ask, what can I eat?  There is a list of items that are less likely to cause heart burn.  They are call safe foods.  Tonight I stuck to the list and ate a baked potato.  So far, so good.

If you are having heart burn/acid reflux issues and need more information, I found this great site that has recipes of all sorts, even vegetarian recipes!  Check it out if you suffer from "knife in my chest" disease!  I am off to make myself some tea, just not peppermint tea!

Got My First Shout Out!

A fellow blogger, Rheumatoid Arthritis Guy, posted my blog address on his home page!  Thank you RA Guy! This is exciting!  For a while now I have been thinking I am writing this blog and only my friends and family are reading it.  I mean, it is great that anyone is reading it, but it would be nice if someone with RA would also read it. You know, someone who didn't love me already!

Not that I am a person who is a people pleaser because if you knew me, you would know that is not true.  As my family can attest.  But if you knew me you would also know that writing a blog is way out of my comfort zone.  I had RA for many years before I told anyone outside of my immediate family.  I would hide my pills and Medic Alert necklace.  At work I only told the President of the organization after swearing her to secrecy.  I didn't want anyone to know.  I didn't want anyone to treat me differently.  I wonder how many opportunities I missed to educate people by keeping my mouth shut. 

The absolute funniest part is the President I worked for was the first person who ever said to me "you don't look sick" one day when she was asking me how I was feeling with my RA.  And she was a nurse prior to being the organization's President.  I just goes to show you that even people educated in the medical field do not always understand RA. 

So what made me not want to tell people?  I guess was afraid of being treated like I was sick but as you can see from the President's reaction, I probably didn't have to worry about that!  I thought  I would miss opportunities because people would see me as "disabled" or "not as abled".  You know "don't give more work to Adrienne, she doesn't need more stress."  I didn't want to hear that.  I wanted to hear that I was being treated like everyone else.

The other reason I didn't always tell people is the reason people with other diseases don't tell people: they don't want to become the disease.  I didn't want to become "the girl with RA".  I didn't want all my conversations to be about RA.  I didn't want everyone to always ask, with that tone in their voice, "how are you?".  I know they mean well but RA is a long haul and I didn't want to always be reminded that I am ill.  For a while last year, I was going through a bad spell where the doctor's could not figure out what was wrong with me (turns out it was Crohn's) but for months I was quite ill.  I finally asked my family (I have a large family) to stop asking me how I feel or about being sick.  I could not hear any more about it.  All the phone calls asking me how I was feeling just kept reminding me that I was ill.  I also have the well meaning folks that try to diagnose my illnesses.  "My friend had XYZ so maybe you have that."  XYZ is never a hang nail or split ends!  It is always some horrible disease that I didn't want to think about.

With this blog, I have come out of the closet, so to speak.  I am laying it all out on the table.  I have RA (and all the other lovely autoimmune diseases) and I am no longer keeping my mouth shut.  I am here to educate and advocate.

Met My Deductible!

I thought it would take forever to meet the $4,000 deductible for my new insurance with The-Company-Who-Must-Not-Be-Named.  I was so worried when I heard the high deductible and thought it would take months to meet.  I didn't realize Enbrel was so expensive that I would meet the deductible in just two months.  I thought the insurance was so bad but once the $4,000 deductible is met, The-Company-Who-Must-Not-Be-Named pays 100% of everything.  I guess those pricey monthly premiums are good for something!

Did You Labor On Labor Day?

I tried very hard not to labor today.  I wanted to have a relaxing day.  I walked my little dog, tried to return something at Best Buy (they wouldn't take it back at that store, long story), went to the park and read a magazine, and watched 1.5 movies (what is up with Source Code, did anyone get it?) and one of my favorite shows "The Great Food Truck Race".  So I think I met my goal of doing no labor today!

I have been having pain in my left knee.  I worry a little bit that it is serious.  It isn't the regular, oh my knee is swollen, pain.  It is sharp pain on the outside of my knee when I twist it.  Maybe it is a pulled/torn ligament but after two knee surgeries I think I recognize this pain.  Keep your fingers crossed that I just tore a ligament and it will feel better in a few weeks.

I saw my primary doctor last week and it seemed like a good appointment.  I have a few issues that if they flare up again, I have to go in a see him.  I don't know about you but I have these weird little things that happen once in a while that need to be checked out.  Sores on my tongue and issues with my scalp.  Always something new happening.  Never a dull moment!

By the way, a huge landmark happened in my life!  My car, my baby, turned 50,000.  My 2002 car has 50,000 miles on it. I had to memorialize it with a photo.  It is getting old!  So sad.  I love this car!

Venus Williams and I Have Something In Common

Venus Williams

Sjogren's Syndrome can happen anyone, even Venus Williams, even me!  I would not wish Sjogren's on anyone.  It is not an easy disease since You Don't Look Sick but inside you can be feeling achy and miserable.

On my recent plane trip, my eyes were hurting so much from the dry air on the plane.  I hate putting the eye drops in my eyes because they irritate my eyes.  I can't make tears so my eyes burn and feel like sandpaper.  It must be so difficult for Venus playing tennis when her eyes get so dry.  Then the dry mouth must be horrible on a hot tennis court during a match that lasts for 20-30 minutes.  I don't go anywhere without a bottle of water because when my mouth gets dry I need water NOW.

I didn't think I would have something in common with an American professional tennis player who is a former World Number 1 and is ranked World No. 32 as of July 2011 in singles and World No. 20 in doubles as of 2011.  Too bad it is Sjogren's Syndrome and not something fun like we both won the lottery or a trip to Bali.  Or our dogs go to the same dog park.  Or we shop at the same supermarket. (By the way, I once saw her sister Serena at a supermarket in West Palm Beach, FL.  It was so exciting!) 

Good Health Venus!