Insert interesting title

Hellllllooo

Joints are doing fine. Lungs suck. I have been getting headaches all of the time. they say it's from not enough oxygen.

I went skiing and kicked ass. Turns out it doesn't hurt my joints, and the next day I feel a really good sore. So that's awesome.

Working from home so I don't have to go out in the cold, and then I am going to go night skiing tonight. Maybe, it's really really cold.

Also found out people with RA tend to hit menopause super early.

Thanks to all of the support I have. you guys are the best.

Grilled cheese sandwiches are the best on a cold day.

It's just a bad day, not a bad life

Well hello

I went on a bike ride the other evening. I used to be able to bike 17 miles a day, at least 4 days a week. Now I can only manage 1.5 and I barely made that. My lungs felt like they were filled with rocks, and I couldn't get enough air into me no matter how hard I tried. I can't believe it got this bad after just a couple of months.

I am waiting for my pulmonologist appointment. My doctor referred me to some information to read online. One of the more depressing thoughts was

"Idiopathic pulmonary fibrosis has a poor outlook."
Well this is going to be fun.

The good news is my steroids and Malaria medications are helping greatly. I wake up and stretch, then I am good to go! Just a little burning in the joints when it is cold.

Addendum: I hate how the websites all talk about my lung disease as basically saying "there is no treatment, goal is to make the patient as comfortable as possible".



I had the best chicken sandwich ever over the weekend. I think a sammich is always better when a mom makes it.

Mosquitos

With my new medication, I can now travel wherever there is Maleria.

Trying new medication and steroids. Sasha Strong.


It makes me jittery. Didn't sleep last night, took some this morning again. Maybe I will be able to sleep tonight. I could use a good 8 hours.

Had a good walk this morning to the train, and then I was minding my own business, and my knee gave out and my elbow ended up in some guy's ribcage. 

Absolutely nothing exciting or eventful. Just tired, tired, tired.

I bought this and it has been shipped to me today.

Maybe it will remind me that I will overcome all of this.

Happy Weekend =)

To the three of you that read this.

Thursday

I thought I was tough.

My hands and feet have been going numb recently. I haven't been able to keep food down, and I don't sleep much anymore.

I have an appointment on Thursday to see what is going on with my liver and my hands and feet. MX can cause liver problems.

What scares me is this is the most aggressive treatment out there, and if it's not working...

I had a deep heart to heart with my friend last night.

WARNING: Morbidity ahead

You cannot die from RA, you die from symptoms of it. It's just constant suffering and pain and annoyances.

Anyway, I went to Cape Cod last night. wanted to get away from everything, which was awesome because I spent over 15 summers there growing up, and I felt so carefree for the first time in a long time.

Pulled up to the beach I used to go to when I was little. Then Matt treated me to a nice dinner out. It was really nice not worrying about anything, even if it was only for a couple of hours.

These posts are getting shorter and more depressing. Harder to type.

Here's to a good news Thursday.

1/4

Last night I hit the 1/4 way mark.

I took my Fourth dosage. I see my doctor the last week of January. Supposedly I'm only supposed to take it 12 times. My hair is already thinning, and getting out of bed is hard. My knees constantly feel like they are going to spontaneously catch on fire, and my hands cramp quickly.

Other than that, I am fantastic. Great support network, and I can still cook delicious food. I can't wait for winter to be over. I sleep with my heating pad between my knees and it's fantastic.

Now only if we could get more than 5 minutes of room temperature water in the shower... I'd be happy as a clam.

"Tis better to have love and lost, than never be loved at all" - Tennyson

Wow.

Thank you all so much for your love and support. Family, friends, and strangers who stumbled upon me. You guys are all amazing.

I am excited to see what 2014 brings.

I was doing some heavy thinking last night, reading over an RA Facebook page I joined, reading over the messages my family sent me, and reading over the two comments I received on this blog. One thing stuck with me from what I've been researching, and that's to make sure you are surrounded by a network of support. No problem there.

So now to why I chose Tennyson's quotation for my header.

I've always been looking for love (haven't most of us?)

I've gone through a few relationships, and each one has helped me grow a little. But I'm worried.

I feel guilty. I know everyone deserves love, but I don't think I should. Right now this whole RA thing is new to me. I am not going to look for love, if I stumble upon it and the timing is right, fantastic. But I don't want to put anyone through this. I tend to not tell people how I'm feeling health-wise, I don't want to burden anyone.

I don't want to meet a guy, and put him through this. In relationships, you talk about things that are on your mind, you talk about how you are feeling, and I don't want to burden anyone, I feel bad enough that my parents have to worry, I'm trying to minimize casualties here.

And I know, I know it's not my fault. But something else I have learned recently as an adoptee who went to a support group is... adoptees are people-pleasers. Maybe it's because we don't really feel like part of a family? We feel like permanent guests? Whatever the reason, we are always trying to make everyone else around us happy.

Anyway.

Here's to falling in like or love in 2014.

Or to falling into a pile of marshmallows... mmm...

"All the world is suffering, it is also full of overcoming" -Helen Keller

Hey world.

I have never been good with starting things. Conversations, projects, homework, and even sometimes my car. So I guess I'll just jump right in.

I'm a 23 year old college graduate. I have a great family, a handful of great friends, and my own room on the bottom floor of a triple-Decker in Boston.

I feel like I'm writing an elevator speech here.

I graduated college from a small liberal arts establishment. I got what I needed from it, and received my BFA in Photography. Immediately following college I entered the wonderful world of unemployment. Surprise. I went through two jobs after college. I started as a dispatcher for a towing company, and then moved on to a call taker at a fortune 500 company.

A few months after I started as a Customer Service rep, I woke up with horrible abdominal pain. After the longest 20 minute car ride of my life to the hospital, I was quickly diagnosed with "yucky pee" and tah-dah, a kidney stone. They put me on some pain killers, gave me a CAT Scan, and sent me home.

Had my college graduation party and my mom's 60th birthday when I got home. (sorry mom!) I don't remember much of either celebrations thanks to my partner, acetaminophen and hydrocodone, (aka Vicodin).

Fast forward to a few months, I'm back in the hospital for three days. Turns out my kidney stone was super long (okay only like 5 mm but hey that's long for a kidney stone) and they used a laser to break it up. Surgery went well, I was released. 

After I was released, I was reading my work up that had been done on me. I noticed something at the bottom of my CAT scan. "Slight scarring/interstitial fibrosis on bottom of lungs". Well I tend to over-think things, so naturally I freaked out. Mom said it was nothing to worry about, so naturally, I STILL WORRIED.

I reached out to my doctor, who set an appointment. I went in for some lung tests (sitting in the clear plastic box etc). They did a complete work up of my blood.

A week later, I moved to Boston from Washington D.C. I work for AmeriCorps, living at poverty level to help senior citizens by participating in SNAP Outreach. 

I get my blood results back, and my RA levels are elevated. My brain goes to "RA? Isn't that an old people disease??"

I set an appointment with a lovely Rheumatologist at MGH. 

I made a list of all of my symptoms/problems I have with my body. I have always had creaky/sore knees, and figured I was just super out of shape. I wrote that down. I also wrote down sore fingers, and my eyes are dry. 

When I met with the doctor, she took one feel of my fingers and said "yep you definitely have Rheumatoid Arthritis."

She immediately prescribed me non-oncology doses of Methotrexate. AKA MX. It's a mild drug in the chemo family. That's all I heard, way to go brain. 

For those of you who don't know what RA is, I shall enlighten you to the best of my ability. Rheumatoid arthritis is an auto immune disease. It means my immune system is attacking my joints. Basically my body is attacking itself. So cancer is the same kind of thing, and that's why they treat it like cancer.

This is the hard part. 

I was talking to a new friend the other day. And he asked me what my biggest fear was. Honestly, it's not the little mouse that now occupies a corner of my room, it's not spiders, it's not being mugged on my way home in Dorchester, I'm living it. I am trapped in my own body. My body basically killing itself.

I mean when I was little, and I woke up from a bad dream, I would just pull the covers over my head, and feel safe. I can always outrun the mugger in Dorchester, or provide a swift kick to the..., I can buy some mouse traps, I can squish the spider, but I can't escape my body. 

People always talk about fighting diseases. How do you fight your own body? I take my medicine, I eat healthy, I exercise as much as my lungs can take it (unfortunately I can't go up stairs quickly anymore, and cold air is horrible to me), but what is fighting? I never understood when people say "Sasha you can beat this". Okay I'll stay positive but I don't know it was always a fluid concept to me.

This turned quickly morbid and I'm sorry. I'm still dealing with this, and am waiting on my cardiologist appointment to see how my heart is doing with this. 

I am so lucky to have a great support system. I have my mom and dad, and thanks to being an AmeriCorps member, I have people across the country who are there. I have my extended family, who has been amazing. 

I will end this first post with a quotation my coworker said to me.

"Sasha, remember you have RA, RA does not have you!" sounds cheesy, but maybe I need some cheese in my life...

I do love cheddar...