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

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14/08/14 Two weeks since diagnosis…

Two weeks since diagnosis…

I am alive!! Ha ha! Arthritis was never a major life or death condition to begin with, but I do understand other sufferers better now. Its not exactly easy to go through life when you are having a flare up. Especially when you may not necessary have the support from friends and family. When you may not necessarily have a caring but nagging mum to constantly worry for you and force you to live healthier.

For the  most part, I can carry on life as normal. It isn’t all doom and gloom. You wake up, you do your everyday kind of things, you eat your everyday kind of foods, and you dream your every night sort of dreams. Maybe I can say this now because I am not at some of the more severe and extreme cases that I have read/heard about. Still, it is good to be alive. You appreciate what you do have and not look so much at what you don’t have.

 

A friend shared this quote written by Pastor J.S. Park (who also has a blog on wordpress):

“If you’re suffering right now, you don’t have to pretend it’s all good. You don’t have to add, ‘But praise God.’ When Jesus was hours from crucifixion, he didn’t sing in the garden or act hyper-spiritual. He was sweating blood. He asked the Father for a way out. But Jesus ultimately went to that cross with joy: not a shallow consolation that knows no pain, but a joy deepened by sorrow and recognizing the hurt of humanity. God is always trying to make you more human and not less. You can cry out in agony. In that honesty, God is establishing great character in you. Such a Christian is both happier and sadder at the same time, because they long for a better home and already have one.”

J.S.

 

It’s OK to be human. It is OK and perfectly normal to be upset when things in life don’t necessarily go the way you intend or want it to go. You don’t have to pretend that it was for the good of some greater plan, or pretend to be joyful about it. If anything, cry your hearts out! And most importantly, be humbled by your bad experience(s). In humility, you learn to love greatly. In humility, you learn to see and notice the things that really matter in your life. You stop trying to succeed at the things that don’t matter.

 

Two weeks since diagnosis…I learnt that I don’t want to waste my life with the trivial things. I may not be dying in the terminal illness sense, but I want want my life to be significant – I want to add value to other people’s lives. 

09/08/2014 Killing arthritis with needles

I just came back from helping out for a week at a youth Christian camp. Fortunately, my arthritis had recovered in time for me to be constructively functional. I feel really blessed to be able to still carry on a normal life. One of the things that I was reminded of at the Christian camp was that time is our most precious commodity. There is nothing we can do to increase the number of days we are allocated, but we have no idea how many days we truly have. It is scary to think that despite knowing this we seldom act in such a way to make the best use of our time. I really urge people to stop and introspect on the things that really matter in their lives and make their own adjustments for a better life, and a better cause. Anyway, I digress….

Today, I had taken the first step to seek complimentary treatment. Despite seeing the doctors and the rheumatology specialist, I had not started to take the prescribed medicines. In fact I hadn’t been able to pick up my prescription due to being away from town to serve at the youth camp mentioned above. So before the doctors open again on Monday, mum had managed to book me in to see a traditional Chinese doctor today. I set aside my skepticism and gave it a go. It comprised of a brief chat so the doctor can gauge what the extent of my ailment and approximately 10 minutes of having needles stabbed into me. I kind of wished she had informed me that she was going to stab me with needles (I don’t handle being left in the dark too well). My advice for the people out there that intend to try out acupuncture is to stay still – very still!!! My mistake was to move my fingers to try and scratch an itch but totally forgot that I had needles stuck at certain points that make it very painful to move. Just stay still!!!

After the acupuncture, was this process of pinching/massaging certain other points in your body known as pressure points. This forms the basis of what is known as acupressure. That too was painful. The doctor grabbed my hand and squeezed it very tightly and twisted it in all directions. It hurts! On the plus side, it loosened up the joint and I could actually feel blood flowing back into my hands. She explained to me that my carpel tunnel was blocked/narrow which was restricting my blood circulation the rest of my hand. I noticed colour returning to my hand after the ordeal – a comforting sign. Though this didn’t restore full flexibility of my joint. I wasn’t expecting it, but the return of strength to my hand was a welcomed start! She didn’t prescribe me any herbal remedies but advised me to do self acupressure on my stomach daily for 5-10 minutes as a form of self care/preservation. Her explanation for my condition is that apparently there is too much acid in my blood and that is what is causing the inflammation. The most logical place that the body produces acid is in the stomach, hence the acupressure targeted at the stomach. Further advice on diet and general healthy living was given which are stuff that most people are generally aware of, but seldom act upon it. I really do need to take my own health more seriously.

I’ve been given a week to see how things go. If my joints are still stiff after a week, then I would need to go back. Otherwise, I am supposedly treated and the rest is self management. I must say that this was an interesting experience. I can’t say for certain whether this had worked, but I do feel better than I was. I shall see in a week’s time and hopefully no further treatment will be required. I would be interested to see a x-ray of my wrists now after all that twisting and squeezing. I am currently waiting for the health centre to book me an appointment at the hospital. Until then, I am wondering if I should start the methotrexate and folic acid treatment. I really wish I could avoid taking it if possible. Every medicine that cures is a poison for another.

02/08/2014 The over endearment of those who care

Of the people you rush to tell about your life events (be it good or bad), family and friends are usually quite high up the list, if not among the first. For me, it was my colleagues at work that found out first about my diagnosis of rheumatoid arthritis as I had to eat into the company’s time in order to attend my rheumatology appointment. So when they heard what I had been diagnosed with, they were sympathetic and tried to cheer me up through out the day. Though fortunately, there was a lot of work to help keep my mind off things. Even so, that didn’t stop the odd customer inquiring politely about why I was wearing a wrist support on my hand last Thursday. Rather than telling them that I had a steroid injection into my wrist in the morning and have been advised not to over exert it, I opted for the ‘grizzly bear wrestling’ story to deflect their questions. This worked surprisingly well at breaking the awkwardness of the situation where I didn’t quite feel comfortable with sharing the story of my life. Must use this excuse again sometime in the future.

Of all the people that took the news of hearing of my diagnosis to heart the most, it was none other than my mother. Can always rely on mum to be caring, but I can also rely on my mum to take things out of context and blow them up to biblical proportions. Seriously, I think mum was more shocked than I was about my diagnosis. Its not like she didn’t know I was going through my pains when I was growing up. The only difference now is that the pain has a name to it other than ‘annoying’. So, mum being her caring self, went online to do some research on my behalf and spoke to her friends and colleagues and various family members to get more insight into my condition. After all that, the conclusion that she can somehow be satisfied with is that I am either dying or at death’s door (to the extent that I may as well be a malnourished HIV patient that has contracted tuberculosis).

I suppose, being a health professional, I knew what I was expecting and understood with greater clarity what rheumatoid arthritis would mean. This had helped me accept the gravity of my situation faster, but also at the same time made me somewhat naive of the possible long term out comes. I know for certain that right now I am just about recovering from a recent flare up. The pain has mostly subsided and my joints appear to be stiffer than they were before the flare up. Just how much time would I have left before I lose practical functionality of my joints? Being young has also made one stubborn about the eventual complications that I may encounter as I get older. I think this is what mum is worried about the most. Worried about how I would look after myself in my older age and who would help look after me. To be honest, until just now, I hadn’t thought that far ahead with regards to my rheumatoid arthritis. I was naively still in fantasy land where I think I would be able to secure an adequate income stream to at least help support my late life. I understand that at one point I will be physically unable to do much. I keep thinking: until that time comes I am going to work really hard and make smart investments so that I won’t be left stranded. Not an invalid road to walk along, but definitely will need to put money where my mouth is.

My uncle wants me to move back to Hong Kong. One of my younger cousins over there was also diagnosed with rheumatoid arthritis. He decided to take the traditional Chinese  medicine route. It has worked for him so far which is great news! Though a life in Hong Kong is probably not one for me. Again, with my own personal skepticism of treatment that  lacks strong data and evidence, I would very much like to give most alternative therapy a miss. Yes, they may work, but not all will have a safety profile where the long term effects of those treatments are fully understood or even discovered. So longs as they don’t do any harm, I am open to the idea. Right now, first step is to focus on living healthily. Today mum, made me this lemon and ginger tea. From what I have read, there are certain biological chemicals in ginger that have known anti-inflammatory effects. I just wish mum added honey to that drink – sour is definitely not the flavour of the month. A common questions I find myself asking patients when they ask me which of two medicine I would recommend is: which one do you think would go down easier? All the health benefits will mean nothing if it doesn’t get into your body. Same applies to food. You can have the healthiest super food sitting in your fridge, but if it tastes so foul that you spit it out (heck not even rats and flies would touch it), it is not benefiting anyone.

 

~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