Feelin' it burn

Michelin Man

One of the main medications I have been taking since my diagnosis is Prednisone.  Prednisone is a non-anabolic steroid and not the kind of steroid that body builders take.  No, I haven't gotten any giant muscles or had any roid rage.  All I get is really hungry sometimes.  Another wonderful side effect is weight gain!  When I first went on Prednisone I gained 60 pounds.  I was real puffy and looked like the Michelin Man.  I worked hard and lost 40 pounds.

I recently tore/hurt the ligament in my ankle therefore I have not been able to exercise much.  I gained back 20 pounds.  Now I am on a mission to lose the weight.  Since I can't walk too much, I am chained to the stationary elliptical bicycle.  Some mornings I don't have the motivation to get up and get on the bike.  I go to bed with motivation to get up in the morning and then the morning comes and the motivation goes right out the window.  I am sure many of you out there know what I mean.  The bed is warm, the pillow is soft and I don't want to get up and get dressed and go out to the garage and get on a bike for 45 minutes.  Who in their right mind wants to do that?  I would much rather curl up and go back to sleep and then wake up and get some food and a cup of tea and sit on the couch and watch TV.  Wouldn't you?  That is much more civilized. 

Here's to me getting up tomorrow morning and getting on that bike!  Help give me the motivation.

I Won! Or at least I like to think so...

WINNER

After a month long, stressful and agonizing time, the insurance company (The-Company-Who-Must-Not-Be-Named) finally relented and has given the approval for the guarantee-issue insurance for both Brenda and I.  Yeah!  The fight has been won, the battle is over.  I feel like 100 pounds has been lifted off my back.  You have no idea what it is like stressing out and fighting with an insurance company about whether they feel you deserve insurance, unless you have lived through it.

For a short time I worked in the insurance field and I know insurance people are not evil.  We had a wonderful woman Michelle working for us in the last few days.  She really pushed our applications through underwriting for us.  I owe her a debt of gratitude for keeping me updated and giving me the "good news" phone call so we didn't have to wait for "7-10 days" for a letter to tell us that we got the insurance.

So I won!  I have an insurance plan with a $4,000 deductible.  Hurray!  I figure with medications that cost $1,000 a month and $736 month, I will get to that $4,000 deductible fairly quickly, then I will stick it to them because then The-Company-Who-Must-Not-Be-Named will have to pay for almost everything.  Ha ha ha!  (read as evil laugh)   So see how I have won!  Or at least I like to think so, in my mind....

Love and Other Drugs

I just finished watching a movie that made me cry.  It was Love and Other Drugs starring Jake Gyllenhaal, Anne Hathaway, and Oliver Platt.  It is a cute movie about a guy (a drug rep) who falls for a girl he knows has a disease that will eventually kill her.  Their relationship is casual at first because she is sick and doesn't want to get serious.  Then he says those words "I love you".  He asks someone for some advice as to what the future holds for Maggie and that scares him.  He tries really hard to make her  "better".  Get her the right treatments, the right doctors, and the right medicines.  It becomes clear that he needs her to get better to love her.  They break up.  Time goes by and on the day he gets his big break, they run into each other.  He realizes that he loves her and doesn't want to live without her (soppy story line, I know) and runs (well, drives his Porsche) after her.  They do have this really great conversation that made me cry.  He says that she made him a better person and he needed her.  She says that it would never be fair because she would always need him more.

So you can imagine why I was crying.  Sometimes people don't understand other people's relationships but I feel it isn't our place to understand other people's relationships.  My partner is always there for me when I can't make it and she pushes me when I need it.  I know that in the future I will need her more than she will need me.

Just like the time we wanted to walk in the Gay Pride Parade after the Winter of Love.  I knew there was no way I would ever be able to walk that far so we rented a wheelchair and she and a friend pushed me the whole way down Market Street.  The wheelchair had a sign that said "In sickness and in health".   Or the time we went to the zoo and I could not walk the whole way and had to get a wheelchair.  Or the many times we have had to skip parties, events, or outings because I could not walk that far or didn't feel well enough to attend.  She tries to cheer me up by popping popcorn, making me a cup of tea, drawing me a bath or putting in a good movie.

Lucky

On to funnier things: This weekend I thought my little dog, Lucky, ate a tiny screw.  I was hanging some frames and had to put the hook things on the back of the frame. I had 6 extra little screws in a little plastic bag.  I left the bag on a table and she got up on the table.  Oh, yeah, I guess I should tell you that Lucky has PICA which means she chews and sometimes eats anything.  (She can't have toys or bedding because she eats it!) So little Lucky got up on the table and chewed up the little baggy and I found the screws on the floor - but only 5 of them!  I panicked.  All evening I looked everywhere for that little screw.  When I couldn't find it, I rushed her the vet emergency room. They sent me home and told me to feed her and wait it out, if you know what I mean...  wink, wink.  So I was on poop patrol all day today.  We didn't go to the Pride Parade because we were nervous leaving her alone.  At 4pm I happened to look in my other dog's cage and there was the little screw!  Whew!  I am no longer on poop patrol.  Let me tell you that was so much fun!

You are getting very, very sleepy

One symptom of RA and chronic fatigue is an overwhelming fatigue.  Sometimes I am so tired I will start to fall asleep with my hands on my computer at 3 in the afternoon.  Have you ever seen an infant sitting up and trying not to fall asleep?  That is what I look like.  My head snapping back and forth while I nod off.  The fatigue is so bad sometimes that I wake up tired and go to sleep tired, even after I sleep for a good 7-8 hours. 

This brings on "brain fog".  It makes remembering things difficult because I am so tired.  It is similar to what new mommies have during the first few months after having babies.  Instead of being sleepless because of the baby, I get sleep but can't get enough sleep or enough good sleep.  Without the thrill of a sweet little bundle of joy!

The fatigue makes me want sit like a bump on a log.  Contemplating things like taking a walk or going out feel like they would be expending too much energy.  Even making dinner seems exhausting.  Today I had a big lunch so I had popcorn for dinner.  Too much energy to make or heat up dinner.  We all know that nuking food takes way too much energy!  Tomorrow is another day, off to get a good night sleep!

Take Your Medicine

Tonight is the night I take my medicine.  Well, I take medicine everyday but tonight I take my Enbrel shot.  You may have seen the commercial for Enbrel on TV or in a magazine.  They spend a tremendous amount of money on advertising.  Do you think that could be the reason the medicine costs more than $700 per month?  My partner, Brenda, hates those commercials because they make it seems like once you take a shot, you will be mountain climbing or hang gliding.  That is not how it works for me.  I take the Enbrel shots and I am not as tired and my pain is not too bad.  But I still can't mountain climb!

HOW ENBREL WORKS
Chronic inflammatory diseases like moderate to severe rheumatoid arthritis are believed to be caused by a problem with the immune system. The immune system protects the body from infections and certain diseases. One of the proteins that plays an important role in the immune system is called tumor necrosis factor (TNF). People with these inflammatory conditions have too much TNF in their bodies. Although TNF is a normal part of immune response, increased levels of TNF play a role in the inflammation associated with certain rheumatic conditions. ENBREL reduces levels of the active form of TNF. ENBREL works on your immune system to reduce inflammation and help manage certain rheumatic conditions.  Enbrel is called a TNF blocker medicine.  ENBREL was the first biologic approved for moderate to severe rheumatoid arthritis.  ENBREL can lower the ability of your immune system to fight infections.

So tonight is the night for my shots. First, I have to take the medicine out of the refrigerator one hour ahead of time to cool it off.  Then I take the two syringes and prepare the ENBREL solution by mixing the dry solution with the liquid in the syringe.  I prepare the syringes for the injection and then inject myself in my upper thighs.  I give myself one shot in each of my thighs once a week.  It really doesn't hurt.  I once used the Pre-filled syringes and, boy, did they hurt!  I also tried the Sureclick autoinjector (it is like one of those epi-pens) and those are painful too.  I really hate to cause myself pain so I will stick with the syringes.

It is time to do the deed.  So, here I go. 

Miracles do happen!

What a week this has been!  First I am told that I am losing my health coverage post dated back to March 1, 2011.  I freak out, as any of you would in my situation.  I call the Department of Insurance and am told they can't do that!  Duh!  Fill out a complaint form and we will look into it. Then I work real fast to get my application and my partner's application in for a guaranteed issue (in insurance speak means they can't turn you down and can charge you butt loads of money for a high deductible) plan.  All the while appealing an individual plan for my partner who was declined.  Faxing here and there!  Today I get a letter stating I am now cancelled January 1, 2011!  How can I be cancelled back to the beginning of the year?  Before I could panic too much (actually this has become so comical, I almost started to laugh) the phone rings and it is a representative from the insurance company.  She calls to apologize to me!  She tells me a huge mistake has been made and she is personally calling to make it up to me and assure me that I have been reinstated until July 1, 2011.  At that time, they will work with me to get me on another plan...  I need to make sure to not cash the refund check but to send it back to the company.  They are so sorry this happened.  She continues to suck up to me.  Please accept our apology.  Everything will reinstated by 5pm today.  Hallelujah!  I guess making a complaint to the Department of Insurance must have gotten someone's attention.  Hummm...

The Necessity of Insurance

One thing that is really important when you have a chronic illness is health insurance.  When I was laid off from my job 33 months ago, I began COBRA insurance payments.  Every month I take my COBRA insurance payment to the Post Office and mail it with a return receipt so I will have proof that I mailed it.  The clerks at the Post Office know every month that I am mailing my insurance payment. They look forward to seeing me each month.

Today I received a letter in the mail stating that my COBRA insurance was canceled on March 1!  This is June! It turns out that the company I worked for canceled their insurance policy on March 1 so I no longer have any insurance through COBRA.  I tried to stay calm when I opened the letter.

I called the insurance company and was told that I am part of a group of people who are unable to get individual insurance policies therefore the insurance company has to give me an insurance policy called a guarantee issue policy.  Guarantee issue policies are expensive and have a huge deductible but will be medical insurance!

Hey sometimes life serves you a curve ball.  The funny part is that my COBRA insurance was going to come to an end in three months and it has been so stressful for so many months, I am almost happy it is over.  There will be no more running to the post office every month to pay the bill on time.  No more worrying about filling out the applications and getting them completed and sent in on time.  No more stressing over which plan to choose.  I just wish they had told me in March not in June.  I guess with all this modern technology it still takes more than 3 months to notify someone that their insurance is canceled.  I am sure if I had missed a payment, I would have been sent a cancellation letter in days not months! 

My Date with Bono

Tonight I finally got to see the long awaited U2 concert.  Those of us in the Bay Area were supposed to be the first to see the U2 360 tour.  Instead Bono got injured and we are now toward the end of the tour.  To give you the timeline: I bought the tickets in October of 2009 for a concert that was supposed to happen in June of 2010.  Instead the concert took place tonight!  As Bono stated: Some of you aged two years waiting to see this concert!

When I bought these tickets, I am sure I was aware that the concert was going to be held at an outside venue.  But of course, that was 18 months ago and as we have already established I have CRS.  Tonight about 15 minutes before we are about to leave the house, I suddenly think maybe I should check where the concert is playing.  In Oakland, the two venues for concerts (indoor and outdoor) are at the same location.  It turns out the concert is an outdoor concert!  I run around gathering appropriate clothing.  Luckily today the weather changed for the better so it is not raining or foggy and gross.  But once the sun went down at the concert, the temperature dropped about 20 degrees!  I was none to happy.

It is funny how things change.  18 months ago I am sure I would have been more excited about the concert but today, was not a good day and it was cold, real cold.  So we left the concert early.  This is the first time in my life I ever left a concert early, I mean really early.  Home by 11 pm.  But I got to see Bono and as a bonus, Lenny Kravitz, even for a little time.  So the night was a success!

Am I The Next Food Network Star?

I am sitting here watching The Next Food Network Star and it got me to thinking about cooking.  I am a vegetarian and that means cutting many, many vegetables.  All that chopping, slicing and dicing is really hard on the hands of someone with arthritis.  There are many tips that can help any people with stiff fingers and aching knees and backs.  Below are shortcuts from Arthritis Today that help make cooking easier:

• Use kitchen or cooking utensils with padded handles or grips.
• Instead of standing at your counter or stovetop, pull up a high barstool and sit down to chop, mix or stir.
• Batch cook. Prepare two portions of your protein at a time and refrigerate the leftovers to use in salads or sandwiches the next day.
• When you have a lot of prep work to do, sit at a table instead of standing.
• To accomplish your cutting and slicing needs, purchase an ergonomically designed knife with a large handle. This allows you to have leverage and stability using your body weight to maneuver the knife. OXO makes a line of large handle kitchen items called Good Grips. 
  
• Many times when you buy a bottle of sauce, it needs shaking before opening. Don’t shake it; roll it. If your hands are sore, use your forearm and the weight of your body.
• Buy a mandolin to help you cut vegetables easily.  Just watch those fingers!
• A food processor can help you with big chopping and dicing projects.
• My favorite new item is my microplane herb mill.  You put the herbs in the mill, then just twist the handle and out comes minced herbs.  

 Another great shortcut (and my favorite) is to get someone else to cut up the vegetables for you!  Anytime someone volunteers to cut up the vegetables, don't be too proud to let them do it for you.  Save your hands for something else; something fun!   One of our favorite meals is a tofu scramble but that means chopping and dicing tons of veggies.  I make an agreement with my partner that she is going to do a bunch of the chopping and I will stand there and do the stirring and seasoning.  That way I don't have stiff hands the next morning.

I guess I will not be The Next Food Network Star anywhere but in my own home.  In another post I will write about nutrition and how my food consumption changed.  Yum!

Any feedback is welcome.  Remember to become a follower if you want to continue getting my posts.  I have been told they are "educational and humorous".  Just what I was going for.

Sjogren's syndrome

The ability to make tears.  For years my partner has teased me that I don't cry; that I "mist".  Meaning that I look like I am crying but the tears rarely come.  In some ways it is funny that I can't cry.  I mean who can't cry??  I never mentioned it to my doctor because I didn't think anything of it.  I just thought it me. 

Finally, I mentioned my dry eye issue to my eye doctor because I was having trouble seeing the TV.  Of course not being about see my favorite TV shows would cause me to see a doctor; not the fact that I can't cry.  Oiy!  He ran some tests and found that I produce no tears.  None, nada, zip, zilch.  Crazy, huh.  Who produces no tears?  Me.  No wonder I don't cry.  This is a symptom of Sjogren's syndrome.  The other symptom is dry mouth which is why when you see me I am most likely carrying a water bottle.  I used to think my dry mouth was from my medication but now I know it probably is not.

My eye doctor put some punctal plugs in my tear ducts to see if they would increase my eye's tear film and surface moisture to relieve my dry eyes.  The plugs fit into my tear ducts and stop the remaining tears from draining away.  I have not felt such pain in my eyes.  The plugs were temporary and dissolved in three days.  But it was the longest three days of my life!  I told the doctor I do not want the permanent plugs, thank you very much.  I told him the pain was so bad that I would have cried, if I could have produced tears!  Ha ha. 

Another experiment failed.  I am sticking with the eye drops and maybe another procedure can be found to help with dry eye in a few years.  So if you see me at a sad movie and I am not crying, now you will know why!  Remember, I only "mist".