A moment’s reprieve. That is all but short of asking for the world.

When you have a rheumatic flare up, it can be agony! It can be torturous! Not in the sense you might think of when being in pain, but rather the limitations that this pain can bring about. The frustration at just being able to do the things you were so happily doing with ease the day before. The word ‘disabled’ comes to mind. A frightening word, and one that shouldn’t be used so lightly. I suppose that was being a little over melodramatic, but sometimes it really does feel that way. There have been days where I would struggle to even pull my clothes on, and nights where I could not sleep because the pain is keeping me up. So far I have been fortunate that my current dose of medication has been sufficient to control my flare ups. Also, when I do have flare ups I tend to recover quicker than before having started medication. That is not to say I enjoy taking my medication. It doesn’t taste foul per se, but rather I find it…unnatural. As unnatural as a knee bending in the wrong direction. After all, medication isn’t exactly the stuff of Sunday roasts nor Michelin starred meals.

These last 4 months have been a curious learning experience. I have traveled to Japan, I have served at youth camps, I have listened to numerous inspirational talks and shows in search for answers and direction in life, I have continued to work, and in the end I am still here. Hopefully wiser. As cliched as it sounds, these last 4 months have taught me to chase my dreams more and to basically just enjoy life. Very bog standard boring advice you hear all the time from the people around you. Except a lot of the times it seems like short term advice. Advice which doesn’t help you plan ahead if you intend to live longer than people expect. Honestly speaking, these last 4 months have taught me to be more pragmatic, more realistic, and to give my own future more consideration. I know that while my hands and legs can still carry me, I should pursue life’s joys like eating, travelling, meeting new people, climb mountains, do extreme sports, save the world etc.

But the most humbling thought came when you start asking yourself, what to do when my hands and legs can no longer carry me. What then? When I am writhing in pain and can barely pull my clothes on, what then…? When I can no longer work to support myself and my family, what then? What then…must I do now to protect my future when the present mind set is to borrow from one’s future to enable their current luxuries?

 

~OnlyRen

01/08/2014 First day of the rest of a rheumatoid arthritic kind of life

It was yesterday. The day that finally gave a name to the condition that I have been living with since around the age of 12.

Rheumatoid arthritis.

The sero-negative kind – which translates to the kind where nothing shows up on blood tests. No abnormal blood counts. No rheumatoid factors. Just healthy looking blood (which I suppose is a good thing).

It took almost half a year of insisting, an xray, 2 blood tests, and a rheumatology clinic referral to get me to the diagnosis yesterday. This is the current attempt. I have made numerous previous attempts in the past (since I was 12) to see the GP about an unexplained pain in my wrists, but to no concrete outcome.

 

It would appear impossible, if not the very least far-fetched, to have been suffering from rheumatoid arthritis at such a young age. But I remember that far back when I first started to get pains in my wrists. Pain that would make it difficult to move my hands and even to clench them into a fist. At its worse, pain that would keep me from sleep. I remember at the time all I was worried about was the legibility of my hand writing. I remember forewarning teachers at school that due to my wrist pain, I may not be able to write very legibly. How silly and naive that all seemed now!  At first I had reasoned that the pain was due to carpel tunnel or poor posture as I was an avid computer user (mostly playing games). Though after yesterday’s consultation at the rheumatology clinic that hopeful justification of denial was blown out of the water.

So what now? What now indeed!!

To be perfectly honest, it doesn’t seem that much different to the day before. Just now there is name for this pain. It wasn’t the diagnosis that I had wanted, but not much I can do about that. Should I have lived a healthier life when I was younger? In every circumstance and scenario this answer will always be YES!  Will it have made a difference? A question that breeds hopeful speculations which are comforting, but not practical.

I suppose what I really should be writing down is how I really feel about this revelation in my life. Today, was like any other day. I did life as normal. A luxury which I am afraid that I might not be lucky enough to have in a couple of decades time. I am afraid. To give the reader (whomever you may be) some context:

I am 25 year old Male living in the UK. I studied Pharmacy and am a practicing pharmacist. I am not completely ignorant of these health implications/consequences, I know what medications are used in the treatment of rheumatoid arthritis and their respective risks and benefits, I’ve served patients who have been treated with these medication to varying results, I have done an entire degree about drugs and despite all that knowledge and experience…I am afraid (and still to some degree in denial). Rheumatoid arthritis to me has always been something that I would expect to get when I am older – MUCH older! The scariest part is that my condition isn’t even considered to be ‘early stage’. It is in fact quite late stage and has progressed to the extent where the flexibility in my wrists have been heavily compromised. The x-ray that I saw yesterday confirmed that the bones in my carpus (the bones between your wrist and where your fingers start) are all very bunched up leaving little to no room between each other as one may observe in a healthy hand. On a plus note my bones did form properly as I was growing up, but somewhere somehow as I grew up the inflammatory process of rheumatoid arthritis was taking its toll on the joints.

I don’t quite 100% know exactly what to do right now in terms of treatment. I am not too keen on the methotrexate and NSAIDs and steroids route. I understand their benefits and risks well which is why I would rather not have to go down that route if possible. I understand that RA is currently incurable and the best form of treatment currently available is to target symptoms and suppress the body’s immune system.  Family members have been suggesting that I try alternative medicine/ treatment (i.e. acupuncture, herbal remedies from various cultures, nutrition etc). But the health professional side of me is skeptical of herbal remedies owing to the lack of evidence in some cases and the possibility of non-standardised formulations and presence of contaminants. I need more time to research. More time to really think things through. I need help!

~onlyren