Monday, May 27, 2013

Remission Research

I didn't find a whole lot out there on RA research and coming out of it. Really only the article below. Will have to keep reading and schedule an appt with Rheumy tomorrow. Big toes and hip joints hurt tonight.

http://rheum4us.org/rheumatoid-arthritis-questions/rheumatoid-arthritis-remission/
What struck here me here is that estimated only 6% RA patients considered themselves in remission, even if they clinically were and disease progression/damage can still happen in remission.

RA....It's Back????

In order to focus myself, this blog is back to life with RA, but check out my new Mommy blog if you are interested on my daily life adventures with Max.

http://melklemtheimperfectmommy.blogspot.com/


So, I was truly hoping I'd kicked this RA thing once and for all. I should have known better. I should have remembered that it is a LIFELONG autoimmune disease, but it's hard when you are feeling so good to remember that.

It started a few weeks ago when I started having foot, hip, and hand pain in my joints at night. 2 Advil seemed to be doing the trick, but everyday, is that safe? So I made an appt to get a physical. Turns out it is ok in the short term but not for a long period of time.

Doctor's order: Make an appt with your Rhuemy for asap. UGH. NO. That means it is back. That means this complete normalcy I've been feeling is over. Not just "fake" normalcy like before where I had to take pills and shots to feel mostly normal. I don't want to go back on meds, shots, feel that pain, that tiredness, that crapyness. NO, I will not I thought. No no no no no.

And them yesterday was a crazy day and today I sit this morning with pain in my feet, again. Not so bad that I can't handle it, but pain. During the day. In the morning. All to eerily familiar. And hives. They came back. About 15 on the bottom of my left leg. They are mostly gone now, but that is how everything started in the beginning....

So an appt I will make and hope this is as worse as it gets, research RA "remission" and hope this isn't me coming out of it.

More to come. While I'm glad you are here RA blogger friends, I am not happy to say that I am back, dealing with this disease, once again.

Tuesday, November 20, 2012

I've never been one for politics...

But after stumbling upon this I might!

Drug companies are trying to put biologic drugs that treat RA into special high tiers that wouldn't be just a normal co-pay but split the cost with the patient anywhere from 20-50%. Now this doesn't sound too bad until you think about what a ONE month supply costs, 3000-4000 dollars! 1500 a month is my mortgage payment which I'd no longer be able to afford should the insurance companies put this into place.

Arthritis.org has a website where you can be an e-advocate. You just sign up with your name and email address and then they pre write letters for you on legislation, etc. that affects arthritis. There is a lot out there that I never knew about. You can edit and personalize the letter telling your story or just a concerned citizen.

So please, for me, I urge you to go to the website below, sign up to be an e-advocate, and send a letter to your member of congress for their support to ensure we continue to have access to these vital drugs that make our "normal" a bit closer to healthy people's normal. Please. Do this.

http://www.arthritis.org/inside-advocacy.php

Here is some additional info:


Patients' Access to Treatments Act of 2012
in·sur·ance, noun \in-ˈshu̇r-ən(t)s alsoˈin-ˌ\
a: the business of insuring persons or property
b: coverage by contract whereby one party undertakes to indemnify or guarantee another against loss by a specified contingency or peril
c: a means of guaranteeing protection or safety
(source: Merriam-Webster Dictionary)
Health insurance has always been your safety net. It promises to protect your savings and your future in the event of an accident or illness. Today, thousands of Americans dependent on biologic drugs for the treatment of rheumatic disease are finding this promise empty.

Many commercial insurance plans have placed the costliest drugs, like biologics, in "specialty tiers." Insurers pay only a small percent of specialty tier drug costs, leaving patients to pick up the tab. Drugs that were formerly covered with $30 or $50 co-pays now cost patients hundreds or thousands of dollars each month to access.


The Patients' Access to Treatments Act of 2012 (PATA) restores insurance to its founding principles: a system of protection for people in their time of need. If enacted, PATA will limit commercial health insurers from charging more for biologic treatments than they do for other non-preferred brand drugs.

Ask your Member of Congress for their support and help us ensure access to vital drugs.


Why is this so important to me? Because at 26 years od when my biggest concern should hve been on what flowers to have for my wedding or how pages my grad school paper should be, I was diagnosed with RA after being in crippling pain for over a year. Buttoning buttons was dang near impossible, opening a jar is still difficult for me some days. After 9 months of trying to find the right drug that I didn't have a severe allergic reaction to or that worked for me to stop the progression of this life long disease, I ended up on a biologic drug called Enbrel. This drug gave me back my "normal" and as allowed me to finish my masters degree(almost) work full time and start a family. Without it, I'd be the person who can barely get out of bed instead of the superwoman described above. Please, I urge you- act and send a letter to encourage Congress to enact PATA today!


Saturday, July 7, 2012

Stopping to smell the roses

Hello Readers! How I've missed writing. I have no excuse except to say its been busy and I've been tired. Baby K is growing perfectly and doing amazing! I am so anxious, excited, and nervous to meet him! I constantly imagine what his perfect face, dark hair, tiny little feet and toes will look like. It's weird to love someone so much already that I havent met. It's so hard to believe we will get to meet him in 6-10 weeks! Boy has nesting kicked in, pics of nursery to come soon :) The pregnancy itself has been up and down. What is has taught me is to slow down and stop to smell the roses. This isn't easy for me, I am a type A person and am always trying to do a lot. As I type this, I have my feet up even though dishes need to be put away and laundry needs to be done. It's killing me, but it's not just me to think about, it's my sweet baby boy and I need to know I followed doctors orders in order to keep him cooking as long as possible. My other new project in my spare time, I've started writing a book. More to come on this when I'm not so tired. I haven't figured out how to posts pics from my new IPad... if anyone knows please comment and tell me! Here is a link to one of my pics a few weeks ago at 28 weeks: https://www.facebook.com/photo.php?fbid=10151862168255374&set=a.10151700222135374.852719.703980373&type=3

Thursday, May 24, 2012

That's Why I Pray

I heard this song on the radio and instantly loved it. Had to share.





That's Why I Pray
Big & Rich

Oh oh oh oh, oh oh, yeah
Land on the TV’s gone insane, everybody’s just laughing
People across the world holding on
The earth cave in, the ocean came down crashing
My neighbor lost his house ’cause he can’t find a job
Don’t you dare pledge allegiance, don’t you dare speak of God
Speak of God
 
Oh! Oh! Oh! Oh!
I’m begging for forgiveness
I want to make a difference even in the smallest way
I’m only one person, but I can feel it working
I believe in better days
That’s why I pray
Some stupid video posted as a joke, somebody’s life get ruined
Out of everything we can create
Where is the cure that keep us safe from losing
Babies having babies ’cause their parents are always gone
Somehow we have forgotten how to make a house a home
How to make a house a home
 
Oh! Oh! Yeah! Yeah!
I’m begging for forgiveness, I want to make a difference
Even in the smallest way
I’m only one person, but I can feel it working
I believe in better days
That’s why I pray, yea-yeah
That’s why I pray, yea-yeah
Has demon from my past haunt me every night
And I just can’t get through it
 
If I could forgive them on my own, I’ll let go and just move on
But heaven knows I am only human
That’s why I pray, yeah yeah
That’s why I pray, I pray, I pray, I pray
Yes I’m begging for forgiveness (I’m begging for forgiveness)
I just wanna make a difference (just wanna make a difference)
I believe (I believe) in better days
That’s why I pray

Tuesday, May 22, 2012

How are you (feeling)?


It's a normal question to ask someone, in fact, I think sometimes people ask it without even thinking about it, like we are an auto pilot.

People seem to ask me this a lot lately. I get it. Mainly they hear the news about the death in our family or see my pregnant belly and ask....how are you?

There are 2 schools of thought when asking this question. Are you making small talk or do you really want to know how the other person is? What answer do you expect to hear?

Do you expect to hear the answer, good, ok, fine, well or other one word answers of choice or do you expect to hear the real answer: overwhelmed, shocked, exhausted, sad, angry, mad, heartburn & acid reflux (yes, they are 2 different things), back pain, throbbing hands, nervous, happy.

I advocate that the only time we should ask this question is when we really have the time and want the real answer the other person wants to give. I'm guilty of the first one as well, it can become a habit that I think we need to be aware of.

Think about the last two times you asked someone this question. Which answer did you expect to hear? What answer did you hear?  If you had paused, stopped walking, or made eye contact for a few extra seconds, what answer might you have heard?

Sunday, May 20, 2012

Highs and Lows

I'm back....

What a week. There is a local radio station where they shared highs and lows of the week or weekend. This is my post, sharing my highs and lows this week.

This post will have nothing and everything to do with RA, life, and love.

It started with an extreme high on Sunday, my first "real" Mother's Day (I'd get cards from my "furry" kids") and the first weekend day with no homework even though my official "last class" was Monday night. I was done with grad school- attained my goal of getting my Masters in HR after 4 long years!!! My wonderful husband had new lights on the patio which are beautiful to celebrate this. (pics to come as I didn't take any in the moment)

Then Tuesday morning hit. 6am text from my Mom, call me as soon as you get this. Oh sh**. My heart sank. I called, she was crying. I thought about my Great Aunt who is 98 years old. After a minute she shared the news, but I didn't believe it. My beautiful 26 year old cousin Ashley was in a tragic car accident and died, a beautiful story on her life can be viewed here

There were many ups and downs during the week as you can imagine. Ups seeing family and remembering good times, seeing the outpouring of love on her facebook page from all over the world and pictures. Downs, well, you can imagine the downs.

The last time I saw Ashley was at Christmas. She stopped by my parents as she was in town from MA where she had moved 6 months before. We talked a lot about her writing, teaching, and courses at UMass. She was so happy and excited to be out there and talked about how much she loved teaching and writing!!

The last time I saw Ashley, Christmas at my parents.
Ashley and Me at a wedding, we danced all night!




Fast forward to Saturday, Graduation Day. I thought about not going, and then knew I needed to. Ashley had so many adventures in her short life, backpacking through Europe, studying abroad in Italy, love of music, beautiful art she created, love of photography, her creative writing, and she was so passionate about all these things she did.

She'd want me to celebrate the accomplishment of one of my passions, getting my Master's Degree! So we celebrated by attending the ceremony (only teared up a few times), a wonderful lunch, and went to a gathering of family and friends to celebrate Ashley's life. She would've loved it, her family and friends together on a rooftop patio having drinks and sharing good memories.

Graduation Ceremony!

My Family

My Mother-In-Law was so great and came to the ceremony too!

Graduation! It was windy and hot- 95 degrees!

My amazing husband!

My family, had to ditch the robe to show the baby bump!






So as I reflect back on the ups and downs this week, it makes me question a few things. Do I have the right priorities set today? Am I living life to it's fullest like Ashley did? What if I watched less TV and spent more time doing what I am passionate about?  What am I passionate about?

As I was looking through pictures this week I found a letter from my favorite Pastor from my high school graduation. I was so glad I kept it and cried after reading it. The middle section had advice from a 27 year old writer named Nate Dybvig in 2001 which was the commencement address he wish he would have received.

Here is what he said:
  • The first rule of life is that it is not fair. The sooner you learn that, the better of you will be. (This is one I think many of us know all too well. Life has dealt many of us some bum cards, like health problems, death, financial problems, etc.)
  •  The most successful people in life are passionate about their work. (So true. How often do we stay at a job we hate because of money, etc.)
  • Keep life in perspective. Higher up the ladder of life, there will always be people you believe to be less qualified than you. But remember there are probably people below you who think the same of you.
  • Question religion. Don't allow it to be an inherit trait, but rather seek a spiritual path on your own terms.
  • Stop worrying about what others will think. Similarly, stop judging the actions of others. (I need to put this on a post it note somewhere I will see it everyday)
  • Network. In today's society, who you know means just as much as what you know, and who knows you is more important than both of them combined. 
  • Get a library card.
  • Spend more time developing a creative art (I need to do this, been thinking about this even more since Ashley...)
  • Tell your family and friends repeatedly that you love them. 
  • If your job sucks, quit. Life is too short to be doing something 40 hours a week that you detest. 
  • A strong work ethic will help you advance when business is good and will keep you employed when it is not. 
  • Always look at animal crackers before eating them. The day you stop seeing them as the tiny creatures they were created to be is the same day that you are officially ordained as an old fuddy duddy. (Love this one, more accurate than stop and smell the roses and I was dangerously close to fuddy duddy status)
  • And finally, live every day as if it will be your last because, eventually, you will be right.
 
A few others I would add:
  • Discover what you are passionate about and do that, a lot. 
  • If you have to disappoint someone, choose wisely who you disappoint (good reminder for me, work or family?)
  • Every man dies, not every man really lives. (Ashley really lived. I hope I can say the same thing about myself when the day comes)
  • Hug your loved ones. Everyday. Tell them how much they mean to you. 
  • Dance. Sing.

A poem, by Ashley Goetz:
all of your existence is saved in a boxful of dreams
you will watch them some day
in the theater of life where you will see every embarrassing moment
every gasp of ecstasy
every meditation to the sun
every glance of human life
every composition of your life
a screenshot of your humanity
and will connect to the web of feeling that can be captured in light particles
and projected in a halodeck
recreated in your minds eye
-Ashley Ellen Goetz