Grateful to be Alive and Living

I have not been able to write for quite a while. This inactivity of mine is not a bad thing as it means that I am largely free of serious illness during this period. I started this blog when I was diagnosed with SLE nearly 5 years ago. I needed an outlet to express the feelings and emotions that I go through as a lupus patients. Little did I expect that my posts especially the one that described lupus and shingles will resonate with so many of you out there. I guess it is because there are few articles that link these 2 illnesses together. I am happy that my blog which is largely a personal expression of feelings can bring comfort to some of you as you discover you are not alone in this journey.

Having been through several episodes of sufferings and experienced the death of a close relative due to cancer in the last few years, I have learned to cherish life more. I faithfully go for regular checkup (from monthly to every 3 months and now every 4 months) with my lupus doc, testing my blood and major organs like kidney function every time. I also go for annual eye checkup since the medication, Plaquenil that I am taking daily now may have side effects on the eye retina.  It is still hard to juggle family life and work life. But I am grateful that I am able to wake up everyday, hug my hubby, fetch girl to school, go to work and have dinner with them in the evening. Life is simple but it is the simplicity that brings joy. I try to be less critical of life and less critical of others. There are still times that I feel depressed and unhappy over things that people said of me or when I feel frustrated when things do not turn out the way it is supposed.  But at the end of the day, I try telling myself whether these things that irritate or stress me out now are important when I am at my death bed.  

I read an article recently on why Bhutan people are happy. It seems weird and paradoxical but it suggested that it is the thought about death everyday that make them happy. Here are the links if you are interested to read about it, though I must qualified that I am no advocate of any religion or any practice.   

http://www.bbc.com/travel/story/20150408-bhutans-dark-secret-to-happiness

http://www.livehappy.com/science/positive-psychology/death-becomes-us

I do not know how long I can live or how long I can stay healthy before I succumb to the next flare up or next illness . But as long as I wake up everyday healthily, I am grateful to be alive and living - to love and be loved by the loved ones around me. I wish the same for everyone who are reading this post.     

Gout and Lupus

It has been an emotion-filled past 2 weeks for me on both the work front and health status.  

Recent results on potassium level showed that the level is back to normal range.  I asked whether I should continue with Micardis since my blood pressure during the period I stopped the medication is perfectly normal. I somewhat suspect that diagnosis of hypertension way before the diagnosis of SLE could be lupus related.  And since I have my lupus under-control now, whether it would be mean that I can stop the hypertension medication. The answer from doc is to continue to take the Micardis (even though it may elevate potassium level). His reason - I have evidence of renal inflammation (in medical term - it is called nephritis) in the initial stage of my SLE and mild protein in the urine.  Micardis is useful to help control renal disease and therefore I should continue to take 40mg daily. I suppose that means I also need to watch my diet and not to take too much high potassium foods. 

Just recently, I wake up with pain on the big toe joint.  I thought it was a sprained joint from walking too much the day before. Didn't think too much about and thought it would heal after a day or so with some massage.  The next day, the pain became worse and I noticed the foot has become swollen.  It then daunted on me that it might be gout - though I has never had it before.  I read up about gout on the internet and learned that gout is due to uric acid accumulating at joints and cause it to be inflamed (commonly occurred at the big toe - a condition called podagra).  A diet of too much protein may cause too much uric acid for the kidney to excrete it, especially if the kidney function is not efficient - perhaps like mine. while I waited for the next day to see a doc, I also decided to self-medicate with Naproxen Sodium (Synflex) - a NSAID that I used sparingly for margarine or severe menses cramps.  While this medicine is effective for pain and inflammation and also can be used for gout, it is harsh on kidney thus I used it only when necessary or in low dose.  I had one tablet in the night and by next morning - the pain and the swell have both subsided. The doc visit was abandoned since I reckoned that the doc would prescribe the same medicine or if not, give me prednisolone that I would be reluctant to start.          

On reflection, I wonder why my health is being hit by one thing by another recently.  Stress could be a trigger since I have dealing with difficult work matters in recent weeks and some involve personnel issues which is emotional straining for me.  Diet could be another factor - but now I am in a fix - I actually do not know how to eat anymore since I need to exclude potassium rich food and also protein rich food... I really do not know how have a balance diet then.  Think I am giving up on this front and just continue to eat everything in moderation and don't care about their potassium or protein level.   Maybe that will make it happier and also help in my health!          
     

Lupus, Kidney Function and Potassium

Living with lupus is like living with a time bomb that you never know when it will explode. Regular doc follow up, blood and urine tests are essential routines that I adhere to so that I will have some early warning signs to prevent the time bomb from going off.  For people with SLE like me, it is always a worry that lupus flares might cause organs damage to kidney, liver, heart, etc, no matter how responsible I am towards health.   

Recent blood test shows that my potassium level is high - a sign that my kidney function may not be functioning properly (since it cannot eliminate excess potassium effectively), although most other indications like ds-DNA are stable. Doc has asked that I stopped my high blood pressure medicine (Micardis) temporary and also avoid food with high potassium like bananas. I will repeat the test in a week time. I read up information on the Internet and realize that high blood pressure medicines might cause high potassium level (apparently potassium helps to lower blood pressure).  Found that some food/drinks like potatoes and orange juices have high potassium level.  High potassium level can be dangerous as it might affect the heart condition and stop heart beating. Since I stopped Micardis, I also have been diligently measuring my blood pressure.  It has been at the healthy range so far.  Some time I also wonder that my high blood pressure is caused by lupus and now that I have my lupus under control, I also have blood pressure under control, then I should not need to take medicine for high blood pressure.  But medicine reference always says once you are diagnosed with high blood pressure, it is something that cannot be cured.... but what happened if the diagnosis is wrong in the first place? Anyone can shed light on this area? 

Though I remain quietly confident that my potassium level will go down during my repeated test next week, I wonder how to achieve the dedicate balance in controlling the different medical conditions and the side effects of medications.  Micardis helps to control high blood pressure but yet it can be harmful to the kidney.  Plaquenil controls lupus but yet it can be harmful to the eyes.  Doc will say it depends on whether the beneficial effects of the medicine exceed the cons at the time of treatment.

Anyway, no point worrying too much and I will just take one thing at a time.  I strive to live each day fully since I do not know what will happen next. Good luck to the my next test results.  
    

Azathioprine and Low White Blood Count

I have been dutifully going for my 3 monthly follow up with doc and taking my medicine daily without fail. But my red blood count has been low or border line low.  Worst still, my white blood has been low for quite some time and it is falling.  It was 2.7 three months ago and my recent test showed that it is 2.2 now (normal range is 4 to 11).  Despite these low counts, I did not feel unwell though theoretically I am prone to infections.  I have planned to get my flu vaccination done but due to the low white count, I have been postponing this jab. In fact, I have not take any medical leave for this calendar year and hope to continue this way.

My Doc has asked that I stopped azathioprine completely now and repeat the test 2 weeks later.  I googled and found out that one side effect of azathioprine is that it may affect bone marrow function and cause low blood counts.  Stopping azathioprine will reverse the side effects.  I suppose my doc is hypothesizing that my low blood count is due to azathioprine since my kidney and liver functions are fine and ESR reading is not too high.  So probably it cannot be lupus flare that causes these low blood counts.

So let's hope that my blood counts will go up and my doc will stop, or if not cut my dosage of azathioprine since the side effects now outweigh the benefits.  Besides the side effects, this is quite an expensive drug since it is about S$1.20 per tablet. So if I can stop taking it completely, it will add some amounts to my savings!  

 

I am off prednisolone!

It's been long long time since I last write on the blog. Days and then months just passed by without you realising it. But one thing I am glad to share is that I am finally taken off prednisolone since Feb this year! The weaning off process has been smooth without much withdrawal symptoms. The morale of the story is patience as you need to reduce the dosage a little every months, even it means a 1 mg reduction month by month. Besides this, I think change of mindset is the other thing you need do. Looking back, I deduce stress and constant worry are the trigger of illness like lupus. So since the last episode of singles, I take things a little easier. While I continue to work hard and responsibly, I stop fretting out of unfinished work constantly. Work will always be there and as along as you prioritise, there should be nothing to worry. Whenever I am tire, I rest well. Love your body, and it will love you back by allowing you to do things you like to do. For those who are struggling to wean off prednisolone, my advice is never rush. Listen to what your body is telling you, and take good care of it. Take your other medication faithfully and regularly. And most importantly, have a positive outlook and enjoy life and the days, and the family members and friends around you. Love yourself and love the ones around you.

Food for thoughts during the Anniversary

It's been slightly more than a year since I was diagnosed with SLE. Have been wanting to write on the blog at my "anniversary" but have been postponing due to my work. I have been transferred to a new department to take on a completely different portfolio in Aug. It's not easy as I have to learn new things from scratch and get to know the people whom I work with. You may wonder why I accepted it given my condition. It is not much of a choice if I want to carry on staying on with this present company. I also take it as a challenge since I am determined to live life as normal as I could despite my condition. So far I could cope with my new work but today I am down with a nasty throat infection and fatigue which forces me to stay home and thus this opportunity to come back to the blog. Sometimes I wonder whether I am addicted to work. While I am on leave and have finished the errands that I need to run, I could not resist but log on to my office VPN and start working. I am constantly worrying about unfinished works and the issues that I need to tackle at work. I also have the urge to do it now although I am supposed to rest so that I can recover faster. The body is weak but the mind is alert, thus this constant struggle. I know it is not healthy and unsustainable but I do not know how to overcome it at this point of time. Not sure whether it is my inner self wanting to proof myself or the competitive nature of mine that I want to show others that I can do the work and can do it even better even though I have SLE. But my new bosses do not know about my condition and so what am I trying to prove? At this stage of my worklife, am I still trying to show that I am a good employee with great capacity and definitely can do the work well? Think there is no need for me to do this given my track record in the company. Am I trying to earn promotion, I ask myself? Maybe yes and maybe not. Promotion means recognition of ability and good work done and it helps with my self esteem. It's also means more money and who will quibble with more money since it helps with my medical expenses? But promotion also means a bigger job and bigger responsibility. Am I ready to take this? Seriously I am not ready for it. The money I have now is not much but comfortable to live on. Do I really need to go after more money at the expense of my health, and of course the answer is no! Do I really need to climb to the top of the corporate ladder to feed my own ego that I am smarter and more capable than others? But those who are there now may not be there because they are smarter and more capable. In the corporate world, we all know some people are there due to luck and timing. If so, why do I need to be so hung up about it? Throughout my life, people have already perceived that I am one of the better ones be it at school, at home and at work. So why I am so afraid that I could not finish my work, get ridiculed or perceived by others to be incompetent? Fear seems to be a cause when I wrote the word "afraid" in my earlier sentence. Fear of rejection and fear of failure at work? So what if I fail? So what if I get scolded for being incompetent or making a wrong decision? Is this the end of the world? When I was seriously ill one year ago, nothing is important to me except my health and my family. Without health, I just can't do anything. But when one has the health, then we forget what is like without it and will take health for granted. Guess it's human nature and it's so hard to overcome it. I am still feeling worried about my unsettled work and the deadlines, despite the above rationalisation. Perhaps this is what people with type A personality traits suffered from. Well for now, I just have to keep telling myself to stop the worrying and go sleep so that I go back to work soon.

What is Happiness?

There have been a far bit of talks during about what is happiness after the much publicity about Bhutan royal wedding and at the recent Singapore parliamentary sessions.  

I have also asked myself numerous times in various stages of my life what is happiness for me. When I was sick and struggling to help myself to basis daily needs like eating and walking effortlessly then, my only wish and happiness to me is to able to do these basis tasks independently. Health is the only thing that matters then.  Life seems so simple at that moment.  But being human beings, we have an insatiable appetite.  Once we have health, we take it for granted and want more of other things - self-esteem, beauty, love, money, status, power, fame.... etc. We keep thinking only when we have these things we can be happy. And we keep wanting and wanting, with the thought that we need more of these "things" even though we have already have the other things.

I suppose as human beings, looking for ways to satisfy one's needs is our innate nature. No one is spared from this, not even for people who are seeking enlightenment or nirvana (which I intepret as freedom from all worldly concerns).  Englightment or nirvana is already a want or a need for that person who are seeking for it. It is not wrong to seek ways to satisfy one's need. Guess things start to go wrong and people feel unhappy when the needs and wants of a person become excessive and the act of seeking these needs by that person have inflicted pain/hurt to others.

I think a main key to happiness is the ability to feel contented and feel blessed with things that we already have.  It does not mean we will stop learning and improving ourselves.  But being appreciative of things and people around us, we are more likely to be at peace at oneselves (thus happier) and will be less likely to fall into the trap of "excessive needs or wants" and hence are also less likely to cause hurt to others in the search of our needs or wants.   

Theory has said that SLE may be triggered by stress. People who are less satisfied with things or people around them are supposedly less happy and more stressed.  So perhaps one way to overcome SLE or as a preventive measure is to first learn to be happy by feeling contented and blessed with things we have and not fall into the cycle of excessive needs.