The Magic of Skype

My boyfriend is deployed to what feels like the other side of the world.  A completely different time zone, and completely (well almost) different climate.  But through the wonders of skype I was able to see his smiling face this morning on my computer.  It is amazing how just hearing someones voice and seeing their smile can make things that you thought were unbearable a little less so.  

I am still on bed rest because of this phantom illness they have yet to solve.  Being on bed rest without the joy of having someone surprise you at lunch with a coffee or come home at the end of the day to snuggle is not easy.  But now that I know the possibility of skyping while he is gone it makes it a little more digestible. 

I have 3 specialist appointments this week, 3 of them to help determine what is causing me such discomfort, such unease, such pain to be honest.  It isn’t my RA, although that is just a nagging thing on top of it, and it isn’t a flu, it has been going non stop for approximately a month now.  I hope one of the specialists can figure this conundrum out. 

From there I’m not sure what I will do.  It will be just me until at least the end of April, which seems like an eternity from now. I might go home for some time, perhaps visit my sister.  Me and the dog might become a traveling side show of illness.  I just have to get through this week and then I will make some decisions.

Yours in Pain,

Ginny 

He is off

He is off.  

This morning I woke up at the crack of dawn, loaded the car and drove the love of my life to the air terminal to see him off on his longest deployment to date.  7 weeks is the planned time apart, with the option of it being extended.  I hate that extension, I hate the idea of him being away for much longer, mainly because I already hate the idea of him being away.  I miss him already and it has been all of 7 hours.  My puppy keeps going to the door to look for him, and it is breaking my heart.

I have always been an independent woman.  I have always been someone who considered herself able to do what she needs to and take care of herself, it was a huge part of my identity.  So why do I feel so lost now that he is gone. I have a hard time thinking of myself without him.  Even just hanging out with him, spending time together, now there seems to be a bit of void.  I will miss him, but I need to dust myself off and get on with this.

He is off. 

Yours in Pain,

Ginny

The Job Hunt.

The job hunt has started for me once again, I was working at a fabulous job in retail but because of my RA and the strain it was putting on my joints, mixed with my chronic infections and chronic fatigue, the job in itself was doing more harm then good.  So the I resume the job hunt, and I always run though such a variety of conundrums when I am interviewing for a job.  Do I tell them up front about my RA? I mean I know legally I am not obligated to but it does often come up while I am employed for someone.  How do I approach them and see their response towards sick days without throwing up red flags.  It is hard to work and not get labeled as someone who is often truant or a slacker because of my illness.  But at the same time I don’t want sympathy or people feeling bad for me because of my illness.  I want to have a successful career and be able to contribute meaningfully to society but I feel that I am being held back.

What sort of jobs were made for someone in my situation?  It has been suggested to me more than once that I should just start my own business, but when I am already in a great deal of student debt, the idea of fronting more capital for something that could ultimately fail and put me back at the beginning seems pretty terrifying.   It also seems terrifying to think I went to University for 4 years, through all the blood, sweat, and tears, to end up working at a retail job with little hope of advancement or career opportunities.   I know I am not the only one in this situation.  My whole generation is currently suffering through a tough job hunt mixed with a frustratingly large student debt load.  Mine seems to just be coupled with increasing costs of medication and trips to doctors offices.

So the job hunt continues. 

Yours in Pain,

Ginny

Another Successful Trip Around the Sun

The day is finally here.  

I am officially 23 years old. 

Birthdays are kind of a weird concept.  I have a million people on facebook wishing me a Happy Birthday, basically congratulating me for making it through another year.  I suppose it is the thought of hoping I have a good day that is kind, but the impersonal touch that comes with facebook kind of ruins any of the intention behind the action.

The snow is falling like crazy here, and like usual I am spending the day curled up on the couch with my dog in pain.  I don’t know why I expected something different, I spent the days leading up to today trying to convince myself that it wasn’t going to be a big deal so I wouldn’t be let down, and yet I still have this overwhelming sense of dread and of being let down hanging over me.  It isn’t any one thing really.  Maybe the lack of company, lack of friends visiting or calling, it could be that my dad isn’t calling because he is on a warm vacation, or that fact that my boyfriend got called into work on his day off when he is getting deployed for 2 months on Sunday.  Birthdays are like New Years Eve, they never really live up to the hype. And when the expected actions involve lots of drinking and partying, it can be tough for someone with chronic fatigue to keep up.

I guess I am just bummed out.  As much as I said I was dreading today I was kind of hoping the universe would pull something off and surprise me.  So far the only surprise is how heavy and slushy the snow outside is.  Which to be honest isn’t that much of a surprise given the fact I first came into this world during a blizzard.  I’ve reached the end of milestone birthdays.  The next big one isn’t until 30, which is a  whole 7 years away.  I am ok with that.  I am ok with having a quiet birthday.  It actually is nice to be in my comfy clothes (sorority letters of course).  Covered in my favorite blanket and doing what I want on my computer.  I do wish that some things could be different, but one of the best things about birthdays is if I screw this one up, I will hopefully have at least a few more to make it better.

I do have one really great thing about today.  I have a fabulous boyfriend.  And he is so stressed with work I just want him to know that spending time together is really the only gift I desire.  He has been through everything it seems like with me.  From doctors visits, drastic hair loss, weight gain, mood swings, the works, and yet he still gives me that little boyish grin and tells me how much he loves me.  I really don’t need anything else in this world.  I have a dog that is hilarious, a family that drives me crazy but loves me, and as corny as it sounds, the man of my dreams.  I would say that that makes me a pretty lucky girl and makes today and pretty happy birthday.

Yours in Pain (possibly from the amount of sushi, nutella and cake I will be consuming later),

Ginny

Moving On

The best thing about a new day is that is brings a new perspective.  Today may have been my melt down day, but today I am taking control of my feelings and I am flipping them around.  Tomorrow is in fact my birthday, and I am ready to start a new.  The truth is what is the point of celebrating another successful trip around the sun without first being somewhat reflective and setting some new goals.  It is hard to know where to start in summarizing what has been a year of big accomplishments and big changes. 

My 22nd year is review; Over the last 364 days I have:

• graduated with high honors from Carleton University
• and I did it in 4 years (with some summer courses) despite suffering through a diagnosis of RA and depression

• I moved in with my boyfriend and I can honestly say that this is the first adult relationship I have ever been in, it takes work, but it is the best kind of work
• moved to Trenton, Ontario from Ottawa.  It has not been an easy transition but I feel like I am starting to find my stride in this little town
• I have been more open and honest with those I have relationships with
• I saw my big sister marry her high school sweetheart and got to sign her wedding license which is kind of a big deal I guess

• I adopted a dog from the Humane Society name Nellie, and surprised myself with how much I love her.  I didn't think I was capable of such unconditional love, and she has shown me that.  She also has shown me I am such a push over, thank goodness we have Kent to discipline her.

Ok so the list might not be all that impressive to someone reading this but to me these were big steps.  Now who knows what the next 365 days will bring, but there are some general directions I am hoping to take.

• I am so over feeling bad for eating chips, or chocolate or cookies.  I am not going to only eat those, but when I decide I want to have some junk food I am not going to feel guilty about it.  Life is short and I want to enjoy some yummy foods along the way.
• I am so not going to worry about the number on the tags in my clothing.  If the clothes fit, if they look good, and I like them, that is all that matters.  This whole worrying about what size I am is so not important.  I happen to have other concerns I want to focus on and this year I am putting all of the energy I have put towards self shame towards something more productive.
• I am going to get more active.  It is so easy with arthritis to loaf, especially when in pain or when sick with whatever infection I have that week.  But no more.  I need to get my butt up, even if it is just for a short walk to get my joints moving, plus I am sure Miss Nellie will be happy to get our and about. 
• I am going to worry less about what other people think.  I cannot control people, and if they are going to be stressed because of me or concerned about me or think I am an awful person there is not much I can do about it.  
• I am going to own my disease rather then let it own me.  I am a strong woman, and the fact is some things have changed since my diagnosis but most things haven’t.  I am still able to do most things, and I still believe in the things I believe in.
• I am not going to stop challenging societal norms when it comes to illness and feminism. I am a feminist.  I have a mental illness.  And I am proud of me.  I am proud of my strength, my willingness to talk about my mental illness, and even though I fear a stigma I know that in reality my brain is just a little mixed up, just like my immune system.  And the way I see my rheumatologist, I also see my psychiatrist.  And just as I take meds to treat my sore joints, I take meds to help treat my sore sad thoughts.

Ultimately I am proud of me.  It might not be what I dreamed it would be, but I am still having fun.

Yours in Pain (and Pride),

Ginny

I'll Cry If I Want To

So I had a meltdown this afternoon when I realized that what I had tried to avoid all month was quickly approaching, my birthday.  Now this isn’t a diatribe about why I don’t want to grow old or how another birthday is another year closer to death, no, I am happy to be another year older.  To be honest after the deep dark depression I have suffered through over the past year I am thrilled to have made it to see my 23rd birthday.  No I am just having a moment of anxiety over my birthday, I feel guilty for putting extra stress on my boyfriend before he gets deployed to do something for my Bday.  I am also anxious that I will get my hopes up for something spectacular to happen only to have it dashed when the day passes with little fan fare. 

To be honest I have never really had the best connotation with my birthday.  Its not like I had a particularly traumatic childhood, on the opposite I grew up in a loving home where my birthday was often greeted with fan fare and a well planned party.  I desperately tried to pick myself out of this funk I was feeling about the impending February 27th.  I sat in the bath tub and tried to think of some positive birthday memories and all I could remember was when I was in grade six.  The school board released their decision on boundaries on my birthday and I found out I was going to have to change schools, meaning that after having attended the same school since I was 4 I was going to have to figure out how to survive somewhere else.  I remember crying as I walked home from the bus stop that day.  Later that night, when I was at the laser tag where my birthday party was being held, I heard a friend’s mom tell my mom that the parents in our district just didn’t petition or work hard enough.  I remember feeling so incredibly bitter towards that woman, and kind of bitter towards my parents for having full time jobs and in fact not petitioning at all.  I ended up changing schools, and things worked out for the best ultimately but it was a devastating birthday for a fragile 12 year old none the less. 

Then there was my 22nd birthday, my most recent birthday which served to be absolutely horrible.  I cried pretty much the whole day, I had the flu, I was sick and sad.  I had recently tumbled into my dark depression of which I was yet to emerge, and my thoughts had grown increasingly dark.  I thought of self injury and even suicide.  I remember when I was little how shitty it would be to die on your birthday but also how it would be a suitable ending.  How departing this life on the same day you came into it would be a neat and tidy ending (I was a bit of a morbid child).  Earlier the week of my birthday my roommates had thought about taking me to the hospital because they didn’t want me to hurt myself, I said I was fine, then went in my room and quietly cried myself into a nap.  My boyfriend had just returned from an exercise, was exhausted and preparing to move, so he didn’t plan much.  Needless to say it was a specularly depressing day that passed with more tears then smiles and getting yelled at by one of my potential future in-laws

So here I am 2 sleeps away from my 23rd birthday.  I think a lot of my anxiety stems not only from my past experiences and how painful they were, but also from an internal sense of dread.  A sense that my life is not where I expected it to be at when I turned 23.  I am spending more time in doctors offices and hospitals then I am at trendy bars or even a place of work.  I am past the point of frustration with my illness and at a point in my life where I am just waiting for the next obstacle to come.  I know this point might come off as a little whiny, but to be honest I am in a whiny kind of self reflecting mood.  

Maybe Wednesday won’t be so bad, or maybe a huge blizzard will hit and they will call off my birthday as a snow day.  Here’s hoping. 

Yours in Pain,

Ginny

The Oscars

While I was watching the Oscars last night I was reminded of a book I read last year by a fellow Rheum warrior Christine Schwab called, “take me home from the oscars.”   I won’t get into an excessive synopsis of the book, but if you or someone you know has been diagnosed with Rheumatoid you should definitely give it a read.

I remember getting this book because some of the bloggers and tweeps I knew had recommended it and being the procrastinator I am, I decided to pick up a book to read for fun whilst in the middle of finishing my undergrad thesis.  I absolutely loved it.  For me the book was a lot more than just a good biography that was interesting and well written, it was also a liberating book to read.  I have always heard how people say it helps children and adults alike to see people like themselves represented in the media but I never really understood this explanation fully. Then I read this book.  For the first time this my diagnosis I actually felt like someone out on the world understood what this journey was actually like.  I felt like maybe all this pain and nonsense wasn’t in my head (like I had been suspecting because of doctors indifference, but thats a whole other blog post). 

It was a freeing type of feeling.  And yet at the same time so self indulgent.  Why did I think I was the only person in the world who could possibly understand the pain and suffering of Rheumatoid arthritis.  It had a lot to do with being in my self indulgent adolescence years, but also the fact that no one I knew, no one around me could understand it.  No one really understood the pain, the fatigue and the frustration that came with this diagnosis.  It was through reading about someone else’s pain, fatigue and frustrating that mine felt validated.  It was the first time since my diagnosis that I was able to put words to what I was feeling and it was incredibly liberating. 

I have progressed a lot in a year, but I am not free from taking steps back as well.  Although I am able to be more verbal with how I am feeling, I am still stuck in how to reveal to people my illness, and having the fear of coming off as a whiney self indulgent twenty something.  Most of the difficulties with my illness are self inflicted and that is something that comes with an invisible illness.  THe constant worry about letting people down, or what people will think is completely self induced, but that doesn’t make it any less real, or any less frustrating. I have been able to start putting more words and verbs in my sentences when describing my RA to people now.  And slowly, I am over coming my fear or judgement from those who do not understand.  I like to think this progress was in part because of this powerful book.  

So go give it a read.

Yours in Pain,

Ginny