Monday, May 9, 2011

Give, Inspire, Bring Hope with Simple Gestures

This evening I wandered away from Dustin's place down towards Metropolitan Market.  We had a nice dinner at Laredo's in lower Queen Anne.  But I needed to get home since I am needing to be up early, despite insomnia. Regardless I was craving a small scoop of gelato.  As I walk towards the steps down into the grocery store I see a young boy, most likely younger than 20 years old.  He was sitting holding his knees and not making any sounds or eye contact with anyone.  He had a sign saying he was homeless, hungry, anything helps.

I have been waiting for this.  I have seen many homeless and such but I have been waiting for someone who truly needs it and is not demanding about their requests.  It felt right in my gut and in my heart.  I went inside and bought him a sandwich, bottle of water, apple, orange, bag of chips and a cookie.  Not much but it is nice when you're hungry.

I made my purchase and bought my ice cream.  I don't really have any money what-so-ever to spare lately, but that didn't seem to matter at the time, and still doesn't.  I walked up to the boy and handed him the grocery bag.  I told him it wasn't much but it would feed an empty stomach.  There was a gleam in his blue eyes that read of hope.

He thanked me quietly and humbly.  As I walked away I turned back to look once more, he was peeking in the bag and pulling out one of the items to eat.  I felt great, and it was truly inspiring.  The kind of good feeling that actually makes you feel choked up like you may cry.

Today was a long and frustrating day with work and my RA.  My mother used to say to do something for someone else and it will change your view of the day and how you feel.  It was the perfect way to end the day.  I hope that he realizes that there are people who care, even strangers.  I hope that he could tell I was inspired and overjoyed to help him in such a simple way.

Even if he was a scammer, he would eat the food and be full.  Sometimes that's all a person needs.  Sometimes a person just needs a smile and an acknowledgement that they exist.  It is amazing how God influences us in beautiful ways.  Open you eyes to the world around you, regardless of your beliefs.  Help someone, even if it straps you for cash or takes a little extra time.  It'll not only make them feel good and hopeful but it will help you as well.  Try it.

Friday, May 6, 2011

Remember Not to Compare Yourself to Others

"Be kind, for everyone you meet is fighting a hard battle" - Plato

I ended my last post with that quote.  This is something that should pass through a human's mind before judging, jumping to conclusions, assuming, suggesting, condeming, etc.  I once heard the hardest thing about being a human being is living, being born and dying are the easy things in life.  I have conversations with family, friends, and even strangers where we will talk about life and our woes.  Even at times we just talk about the mundane things in life such as the weather or the recent holiday or the plans for the weekend.

There are a couple things I have heard a lot since my diagnosis with RA, "You're too young for that!" is one of them.  Common myth debunked: RA is diagnosed throughout a life span, not just once you hit your "senoir years".  Another thing I run into a lot is people assuming my condition is worse than their own conditions or health concerns. 

I was talking with my sister today on facebook and I was inspired to tell everyone. My health concerns are mine and yours are yours.  Neither one is more or less important that the other.  We all deal with our health in our own ways because we are unique.  Yes, I deal with chronic pain, but many other people do as well.  Am I worse than they are or are they worse off than I am?  It doesn't matter because it's not a competition.  I feel everyone has a right to express themselves and vent without feeling judged or compared to.  I am completely for people empathizing but remember once again we are unique.  We have differences in the way we feel, see, taste, cope, etc. 

Watching how different medications work for some while others don't is another way of viewing this.  When I was going to start on Enbrel I was excited because I knew a half dozen people who were on it and it worked great.  However, I wasn't one of them.  It is common for us as humans to compare ourselves to others.  Sometimes we belittle ourselves in the process while other times we may demean others to make us feel better. 

Always remember:
"Be kind for everyone you meet is fighting a hard battle" - Plato

Thursday, May 5, 2011

Your body attacks your joints? What?

I have a demon that I deal with on a daily basis.  Sometimes this demon interrupts my life, sometimes it doesn't do anything.  It can stop my hands from working, or my hips from allowing me to walk.  The demon is more commonly known as Rheumatoid Arthritis (RA).  I was diagnosed in February 2010.  My doctors believe I may have been dealing with RA for much longer.

When I young, about the age for puberty to kick in, I had pain in my knees all the time.  In middle school and high school pain developed in my wrists.  My doctor at the time assumed I strained them too much causing tendinitis.  When started I living with my first roommate Niki I started have issues with my shoulders and minor issues with my hands.  I started becoming more and more fatigued.  This became confused with depression, which I wasn't dealing with at the time.

After discussing everything that was happening with me starting in summer of 2009 with my coworker Marnie she mentioned how it sounded like RA.  I went to a doctor in November 2009.  At this point my hands, hips, shoulder, and wrists were painful, swollen at times, and achy.  The doctor said it did sound like RA.  This doctor was in Kent, WA and I had informed him that I was going to move to Seattle so if I was seeing a specialist I wanted to see one there.  He ended up referring me to Covington, WA.  So I went some time without seeing a specialist. 

In February 2010, I went to the Seattle Rheumatology Associates after seeing Dr. Morrison at Swedish Queen Anne.  They're great.  I met Lynn, my nurse practioner, and Dr. Mease my rheumatologist.  My blood work came back with very normal markers.  However, I was symptomatic, along with a family history of assorted autoimmune diseases.  Dr. Mease diagnosed me with servo-negative RA.  Which is a fancy way to say that they can't track my disease through my blood work, because the standard markers that would indicate RA are normal.  RA is an autoimmune disease that works on your immune system.  For some unknown reason my immune system thinks my joints are foreign.  Like the body does when a person receives a transplant.  Therefore it attacks my joints causing pain, swelling, redness, and over time damage.

We started down the road of medications, side effects, and frustration.  In the summer of 2010 I started Humira.  This worked great, except I started getting infections which I hadn't ever had a problem with before.  Humira is classified as a biologic drug that attacks the cells that can build up along with inflammation cells.  Needlesstosay, biologic medications are all injection type medication and increase the risk of infection. 

In November 2010, I stopped taking the Humira.  I called Lynn and she understood that I was feeling 100% better and I didn't want to be on a medication if I didn't need to.  She said that I could stop the Humira if I wanted to but to schedule an exam.  My last flare up for a two month period was November 15ish.  During those two months I felt amazing.  I wasn't fatigued, I didn't hurt, it was great but I was waiting for the other shoe to drop.  It dropped in February, I was worse than I was when I was initially diagnosed.  We upped my Tramdol and Pred, added Celebrex and switched over to Enbrel.

I was excited for Enbrel because many of the people I knew who were on biologics were on Enbrel.  A month passed and I wasn't getting any results except for nasty injection site reactions.  I went to the emergency room over the last one because it made my left thigh swell up, inflame, red, painful, etc.  I was worried and scared.

We stopped the Enbrel and I went in for an appointment mid April to see what else we could do.  Of course, the next step in medication was either an actual injection or an infusion.  With RA and many other autoimmune diseases you have to start with NSAIDS, then progress to DMARDS, have to take Methotrexate (lose dose chemo) before you can try any biologics.  Humira and Enbrel had come in a handy-dandy pen with a button.  This way I didn't see the needle going into my skin.  I was terrified to do injections. I had blood work done and radiographs which came back looking beautiful, which I guess is good.

After talking with Lynn and discussing the concern she said I could come in and have the nurses give me the injection.  Which I was much happier with.  So, I scheduled an appointment for May 3rd to start my new medication called Cimzia.

I went into my appointment with Lori, the nurse, extremely nervous.  I'm usually fine with other people poking me with needles.  I enjoy donating blood, etc.  But between the time I had my appointment with Lynn and my Cimzia appointment with Lori I decided I should be able to do this.  I had many people who were supportive of my ability to do my injections myself.

The version of Cimzia I am on is in a preHumira and Enbrel did.  Which was immensely relieving to me.

Cimzia starts off with a loading dose: inject two syringes at week 0 then two at week 2 and two at week 4.  These are given the same day within minutes of each other.  So, I had another injection to do.  Since I can give it in my thigh or my stomach, two finger tips away from the navel I decided to try my stomach for the second one.  First off it's an awkward angle for my hands.  Secondly, my tummy was sore afterwards.  So, I decided to stay with my thighs.

Lately, I have been flaring up terribly, pain ranging from a 7 to a 9 on a scale of one to ten, one being nothing and 10 being unbearable.  Swelling has been bad too.  The worst part is I have lost quite a bit of strength in my hands and often can't open things.  My hips like to seize up as well making it difficult to walk.

I don't want to deal with RA, but I don't exactly have a choice.  I will be posting information here and there about the disease and how people can understand it or help others.  The absolutely most difficult thing about autoimmune diseases is often you do not look sick therefore a lot of people don't think you are or they don't understand.  I do get glared at when I take the elevator even though I'm 24 and look healthy.

My posts about RA are with hope that I will help others understand autoimmune diseases and that you cannot assume anything about anyone.  Just because I take the elevator doesn't mean I am lazy, it means my knees or hips are in too much pain to go up or down the stairs.  I have chosen it to be an endeavor to enlighten and help others grasp this. 

On May 21st, 2011 I am walking with a dear friend Olivia, she is in a very similar situation however she has Stills disease as well.  She inspires me with her up beat attitude and presence.  This walk is put together to raise awareness, and money for research. 

Here is the link if you would like to check it out: I am a part of Team Oly.

I also am in two research programs through Dr. Mease's office.  One is anonymous and tracks how I am doing with my disease through a survey every couple months.  The other one is not anonymous.  I filled out a huge survey and donate blood to the research of the complexities of RA.  They are testing for variances in the people with RA and why some medications work perfect while others don't.  I will help in any way I can so that some day we will have a better understanding of autoimmune diseases.  I know my time, blood, energy, surveys may help someone in the future.  That's what I give to the world in light of a negative situation.  That makes me happy and feel good.

Greet the world with a smile.
Always look for the good because it will keep you strong.

Always Remember:
"Be kind, for everyone you meet is fighting a hard battle" - Plato 

Wednesday, May 4, 2011

When the Summer Turned Bleak, Dark And Slow

It's a warm and sunny Sunday in July. It was either late afternoon or early evening. I am obsessed with Imogen Heap - Hide and Seek. Mama and I chat like always, nearly every day, sometimes multiple times a day. The conversation ends with "I love you!". I always meant it deep down too. Time to relax, drink red wine and sing along with Imogen Heap. I lay back on my bed singing to Hide and Seek with the wine glass in my hand. I had been working out a lot at that point and was probably in the best shape I had ever been, that changed.

With a slight alcohol influence I went to bed after sundown. I didn't sleep well at all. It was about 1:00 a.m. when I awoke. Wide awake like I had been startled or shook. For the rest of the night I was tossing, turning, getting up, just very uneasy.

I go to work, exhausted, slightly grumpy from my so-called-sleep. I am attempting to do my job but frankly I was suffering from compassion fatigue combined with work frustrations. I had been trying my best to leave my phone in my purse in treatment and not in my pocket, per the rile. I wandered back to send a lengthy fax so I checked my phone. My brother had called a few times and sent a couple texts. However, the messages were vague. So I started the fax and called my brother from the clinic phone, uncertain of whats going on.

Though I never once thought what I was about to hear would be why he called. He asked me where I was and if I could get to Kent. I told him.I was working and I couldn't get to Kent followed up with a why? I'm sure a deep sigh was given before he told me that Mom died. The words out of my mouth were "Are you KIDDING me?" instant response. Reflecting back on it, who would kid about that? Regardless John replied with that response of I wouldn't joke about that.

Everything at this point is starting blur. I remember saying "Yeah, I will find a way, I'll be there" then the phone clicking. I hung up the phone, my knees gave out and I buckled to the floor sobbing. The only way I could speak and be understood was to practically yell. Lizzie and Katie tossed back and forth about who would drive me to Kent. Katie was the one who did. We stopped by my place and I dropped off Quinn assuming Heather would be there but she wasn't. The trip to Kent is a blur of phone calls, texts, crying, giving directions, etc.

By the point I had gotten to Mom and Jay's apartment Mom had already been taken away. Part of me wishes I could have held her hand to say good bye; however, part of me is very glad I didn't have that image to place in my mind of her.

The last time I physically saw her was shortly after Mother's Day, so in May. She came over to get her Mother's Day presents which made her laugh and happy. She told me how much she loved me and how much I didn't need to do this or spend that much money on her. I vividly remember her walking away to her car after I hugged her and told her I loved her and I would talk to her soon. I told her to let me know she made it home safe. That evening she texted me to let me know.

She died, unexpectedly in her sleep, Sunday July 11th in the night. This is the worst thing I have ever encountered, next to dealing with my RA. Everything in me shattered... it's still partially shattered. Just writing this out makes me cry. I was so angry with the world, and God for taking my best friend in the entire world away. My friends, coworkers, relatives, etc comforted me but I just wanted her back. I wanted to wake up from this nightmare.

I still want to wake up. I dream about her constantly. At first it was like I couldn't see her. Then I had a dream where she sat down next to me and told me everything I needed to hear. Now the dreams are more interactive, which is a blessing and a curse. So much has happened since she passed and I want to call her to tell her about such and such or find out how to deal with something or cook something. I want to hear her laugh and her say "Kiddo". There are times where I realize this is a "mom moment" where I would call and see her perspective. Mind you, I know her perspective on a ton of things but she always had something that would open my eyes. I enjoy seeing other perspectives and hers was one of my favorites.

I am 100% convinced this pain will never go away or get easier, I will just understand it more and more as I feel it. There will be further posts in regards to my Mama. But at the moment I am too caught up in the grief to say much more. I love her and will always love her. My heart bleeds for the day I can see her, hug her, and talk to her again. That will be my heaven.
I will often quote her and reference her in future posts.
*Picture shown is at John and Jamie's Wedding April, 2010

My Life and The Free Pile: Inspiration

Friday April 29th, 2011, my good friend from work Ana came over to have dinner and watch The Walking Dead. Often her and I talk about the free pile located in the garage of my apartment building. She told me I should write a book called, "My Life and the Free Pile". Since I am not a novelist, I decided a blog was more interesting and easy to compile. I have always considered myself a lucky person. I'm often given items, finding items, getting deals, or inhertiting something.

What's the "free pile"?

I live in a really nifty eight floor apartment building in lower Queen Anne. Nice neighborhood too! In the main garage connected to the building we have recycling and garbage dumpsters. Also, we have created a free pile, located between two of the parking spots. This area has been designated as such since before I moved into the building. I have lived there for a year and a half. So, people who have items that are still in good shape and usage will often bring these items down with their garbage and put them in the free pile. Throughout the weeks the items come and go. Free pile items range from shoes, books, clothes, furniture, slates of wood or marble, bed, frames, car stuff, pet items, frames, electronics, etc; you get the idea.

What's "free" mean?

According to Merriam-Webster Dictionary (online) free has over a dozen different meanings. These range from political to scientific to standard meanings. The ones below seem to fit what I am dicussing.

2.c.: made, done, or given voluntarily or spontaneously.
4.a: having no trade restrictions.

Free to many often means it requires no monitary exhange, or nothing in exchange. Most often Free can be tangible and intangible. Tangible free are the items you recieve like the items found in the free pile or that are inherited. Examples of intangible free things are your smile, your time, effort, and caring. Words are powerful things if used the right way; mind you yes, they can be powerful when used wrong as well. But thats not to be dwelled on now.

So my recent ephiphany is spawning from the free pile, and how much I give as a person. This blog is not to brag about what I found in the free pile or was given to me. Thats not the point. The point is to show people that when you give some you recieve some in a very similar way. You just have to open your mind and eyes to realizing it's correlation between giving and recieving.

I have chosen to be nicer, smile at people, help out in ways that I am capable. This is a simple process. You walk down the street, don't stare at the ground, smile at the person passing you, comment on their dog, or say "Hello". I know personally, I feel better when I am acknowledged by people, even more so if they compliment my dog or my purse, etc. Big factor: it has to be genuine! Don't search for an aimless compliment if you don't have a genuine one to give.

The second thing I started doing is helping people on the bus when they're looking for a stop or a location. If they are sitting in ear shot I will help them, sometimes even pull the chord for them. If a person is getting off at the same stop as me I offer to point them in the right direction. I have done this for elderly people and visitors.

Another huge one to do while on the bus or waiting for the bus is offer your seat to someone who seems like they would benefit from the seat. (This is a personal pet peeve of mine.) I will often intentionally sit up in the front of the bus when it appears busy so I can offer my seat to an elderly person, or a parent with a small child. I cannot count how many times I have been riding a busy bus full of kids and young adults my age, someone who could benefit from sitting climbs on the bus, scans the bus for a spot, and no one gets up. It's not right.

*In another post I will touch base on the fact that I have Rheumatoid Arthritis. This is an invisible to most autoimmune disease. So, even on days where I am flared up and in pain I know it's easier for me to stand than others and I'm willing to endure it for someone else's comfort.

I had elderly lady (this has happened a few times) offer to give me money or pay my fare for giving her my seat. I always decline the offer. However, this shows me that she might have been forced to stand when she shouldn't have had to. I offered my seat to a woman a couple months ago. The bus was packed, and the driver shouted back for someone to give this woman a seat. I stood up, ended up chatting with the women. She was very appreciative of the gesture. After she got off the bus, the young lady sitting next to me told me I deserve a "gold star" and that I was very approachable.

Doing things to help others, even just making them smile not only makes them feel good or brighten their day but it makes you feel better. My mother, bless her soul, used to tell me when I ws having a bad day to do something to make someone else smile. That this will help me feel better. As a teenager I was angst and would sluff it off at times. Now as an adult I strive to do it when I recognize that's where my mental state is at.

*In the next post I will talk about my mother, who I love dearly. She passed away July 2010.

Golden Rule #1: Treat people the way you want to be treated.


do something genuine that will

potentionally change a person's day

around towards the positive.

That is my challange to you, as a reader.