Back to the Beginning

 

It's a new year and a new decade, so I thought it would be interesting to take a look back and get some perspective on where I am now compared to where I've been.  The best way I know to do this is to take a look back at past journals, so I fished out my journal from two years ago - not long after I had been diagnosed - and started reading.  I have purposely not used my blog as an online journal, preferring to keep my deepest, unprocessed thoughts and feelings private, but I think these entries reveal what having RA was really like, especially in the beginning, in a stark and honest way and therefore, it feels right to put them out here now in an effort to keep shedding light on what is often an invisible and misunderstood disease.

I think these excerpts speak for themselves. 

January 3, 2008

I had my appointment with my neurologist today, whom I like very much.  She took my whole history, including how my RA first presented itself.  She asked me about my neck and recommended physical therapy for me.  She also commented on how much my lower body is less affected and stronger than my arms and upper body.  She sent me down to get neck xrays to make sure it is only (only?) the RA causing so much pain and stiffness.  She really seemed to empathize and get what things are like for me- noting during the exam that it's weird how I look perfectly healthy and fine, but it's clear from a closer look that I'm struggling.

So I got the neck xray then stopped by my rheumatologist's office to see about the precertification for the drugs- it may take another week, which is really frustrating.  Everyday I'm in pain. I want the meds.

My first reaction about the physical therapy was 'ick. not more to do.'  I feel like I am taking on another full time job managing all of my health things. I think 2008 is going to be the year of health. I'm basically dating my RA. How delightful.

I have been feeling glum and hopeless. I cried myself to sleep last night in a way I haven't done in ages. My life just feels entirely different and forlorn.  I was such a healthy little girl, running around with my brother climbing trees, riding my bike all over.  Now, it is hard to lift my arms overhead or walk.  I do not feel any hope.  I just feel dulled and distant, like there are shades over and around everything.

January 5, 2008

I am lonely, and I'm sad that I am sick. It is overwhelming to feel my life become so different, to know that I can't ever not have RA now that I have it.  

January 16, 2008

My precertification finally came through for my meds on Monday, so I picked them up today and have my appointment on Friday with the nurse, so I am happy about that. Though, at this point in time, I feel so depleted that I honestly don't actually feel anything like happiness about anything.  I feel dampened and kind of shattered emotionally.  I have a feeling of wanting to run away and start over and have a totally different life somehow. 

Obviously, or evidently, I am feeling quite downtrodden about most everything.  Twice I have nearly started crying on the subway.  I suddenly felt my life in that moment felt alien and strange and so far away from what it ought to be. I choked up and had to hold back the tears that had welled up in my eyes.  All I wanted was to escape and not feel smothered by everything.  Everything just feels worthless.  I just feel disconnected from everything around me and it makes me want to curl up and hibernate.  I go from feeling so raw and exposed and grated to feeling nothing but emptiness and this heavy, dank solidness that feels like it's a fog settling into me and closing me off.

When does it get any better?  What does it feel like, to feel anything other than nothing?

February 2, 2008

Luckily, I am feeling much more myself and much less pitiful about the outlook of life in general, and mine specifically.  The reasons for this are, I'm sure, because I think the meds have begun working, and I am not in a near-constant pain.  It is amazing what pain- physical pain, can do to your emotional and mental state.

I am feeling quite a lot better - sleeping so much better now, which is such a profound relief. My neck still bothers me quite a bit and my poor little toe is, I think, permanently deformed, and therefore painful still, but I feel so much better than before. With each improvement, I realize more and more how bad it really was, how bad it can be.

February 20, 2008

I had a massive reaction at my injection site - about 2.5 inches in diameter, massively swollen, red and throbbing.  It looked like I had been stung by a man of war jellyfish or some awful and giant, potent creature - but no, it's just the medicine, that's all.  It's better now - it just looks like someone slapped my leg incredibly hard.

February 25, 2008

Kate and I headed down to Loreley for Kelly and her brothers' birthdays. They rented a room since there were three of them, so it was great fun. My feet were killing me, but I got up and danced anyway, and it was fun to be out in the city.  Kate and I went to dinner afterwards for burgers- we were starving.  Luckily, it was close by as my toe hurt so badly by the end of it that Kate had to help me walk home.  RA sucks.

Sunday, I pretty much crashed and was in bed at 9pm. I am still quite exhausted, so off to bed I go again.

Reading these entries from my past makes me realize how much has changed since then, but I think the biggest change between now and then is not in me, but in the RA community itself. I wish that I had been able to tap into a network of others like me back then, but at that time, most of my google searches turned up nothing but academic or medical sites. Most of the organizations I found about arthritis seemed to cater more towards people much older than me who were dealing with osteoarthritis rather than autoimmune forms of arthritis.

In my darkest moments, I felt completely alone and isolated as I struggled with the physical implications of having a disease, but I struggled more with intense feelings of isolation and depression because it felt like I was completely alone and misunderstood. 

I wasn't the only one that felt that way.

Sick of being sick by ourselves, so many of us have turned to the internet and created a space of our own to understand what this disease is in a larger context, and to make connections with others in real time who are coping with many of the same feelings and questions. I know that I am stronger and better in part because of all of you.

Comments

[www.facebook.com/profile.php?id=728922186]

This window into your thoughts reveals how strong you are. In you, RA has a foe it cannot conquer.

[WarmSocks]

Excellent writing, capturing the emotional impact of early RA.

I'm starting to feel really optimistic that creating awareness can make it easier to deal with this disease.

[Amanda]

Your journal entries sound a lot like what I was thinking too! I know I can't go back and make it easier for me then but knowing we can make it easier for others now helps!

[millicent]

You've come a long way, Baby!

[jodi]

wow, sara, your journal entries really sum up how sad and alone we all feel at the beginning of our time with RA. i remember having such similar feelings and being so depressed. i am in such a better place now, thanks in part to you & your blog. thank you so much for doing what you do. xoxo

[Kat]

"I can't ever not have RA now that I have it."

I think this was one of the hardest things for me to overcome. When I was waiting for a diagnosis, I was hoping it wasn't RA but rather something that could be cured.

It's tough to realize that this is NEVER going to change, it's tough to not let it define you moving forward. It blows my mind that I've been living with this for two years now. I am only 26, so god willing, I may live with this for another 50 years (and I thought two years was hard enough).

But, because you have the disease doesn't mean you have to LIVE with it. I think that's an important realization for those just diagnosed.

[Mandy]

Thanks for this - you have come so far! I am going through a lot of the early acceptance difficulties with my RA so thanks for airing your feelings because it makes me feel less solo. After using a ChiliPad to help with my RA symptoms I decided to work with ChiliTechnology (http://www.chilitechnology.com) to promote it. The ChiliPad is a mattress pad that cools (or heats) any bed. They come in all sizes, they work using water, and they're small and efficient. I used to take sleeping pills because the pain in my hips would keep me up at night. After playing around with the temperature I finally found a way to sleep through the night: heating up the bed a bit and then setting the timer to cool it down in the few hours before dawn is what works for me.