Learning to live meaningfully with Lupus

Food for thoughts during the Anniversary

2011-10-20T14:18:00.000+08:00

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?

2011-10-20T14:13:00.005+08:00

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.

Managing Prednisolone Withdrawal Symptoms

2011-07-19T23:54:00.001+08:00

It has been a long while since I last accessed my blog. Have been extremely busy with work after my long medical leave. My nerve pain on my left finger has healed but not completely healed. It's not painful now but I can feel that it's not normal as before. Shingles has indeed left a bitter after taste for me.

I have learnt my lesson. It's important not to let your guard down especially when you are reducing the dosage of prednisolone. Your immune becomes weaker. Either your lupus flares up, got disease like Shingles or you suffer prednisolone withdrawal symptoms like fatigue. When my doc reduced my prednisolone to 6mg in Feb, I got Shingles. Then in May when dosage was down to 5mg, I experienced fatigue and my blood count showed low white cells and low haemoglobin. Doc then up the dosage to 7.5mg. It is really a hurdle to lower prednisolone let alone wane it off. So besides taking my western medication and my vitamins dutifully now, I am also seeing a Chinese physician who has experience with lupus patients. I am taking Chinese herbs regularly to supplement and "wake up" my adrenal gland since it has been on "sleep mode" for quite some time. The adrenal gland is responsible for the manufacturing of the "hormone" - corticosteroids. But when you start to take prednisolone and in doses more than the body level - (i.e. anything more than 5mg is considered as "treatment' dosage since the usual body level is between 5-7mg) , this gland reduces the output and eventually shuts down the production since it senses that there are more than enough corticosteroids in the body. And this is the reason that people will experience prednisolone withdrawal symptoms like fatigue if the dosage is suddenly or drastically reduced. I am hoping this works for me, though it's kind of troublesome as I must make sure there is at least a 2 hours gap in taking western and chinese medications. I am now on 6mg prednisolone for 2 months (and yes I think the doc is reducing it extremely slowly given my last 2 episodes) and also take my chinese medication (is in powder form and you mix it with warm water and drink it) twice a day. So far, my blood test is alright and I just have to keep my finger crossed that this combination of western and chinese treatment will eventually help me wane off prednisolone uneventfully.

Nerve Pain Managment

2011-03-19T00:26:00.002+08:00

Blisters caused by shingles have healed, but the nerve pain persists. Doc increased my Lyrica dosage to 300mg per day (4 tablets/day). My left hand continued to be painful, numb with pins & needles all day long. And when the intense shooting pain or aching pain comes, it can be so unbearable that I am reduced to tears. No painkiller seems to help too so I tried ultracet again in the night but by taking half a tablet instead of one. I was hoping that it does not cause nausea but may help in reducing the pain at night. So far, it works - while it does not completely reduce the pain, it has helped to reduce the pain intensity. I felt more tired the next day but at least I did not throw up. Doc also asked me to increase my prednisolone to 15 mg per day for a couple of days and then reduced it to 10mg for the next 5 days ( I was previously on my way to reduced prendnisolone and was taking 6mg). He was hoping that this would help to reduce the inflammation of the nerve and hence reduce my pain. We will monitor the pain and see whether the medications help. If not, the next step to manage my pain is to do a nerve block. Though it is simple procedure, but as it is carried out on the spine, it does carry some risks. So I will rather not go to this route, but hope that the nerve will heal over time and the pain will go away.

Diet wise, I am pumping myself with vitamin B complex, C and E daily. I read that celery juice is good in reducing nerve pain and I am thinking of trying too. Though Doc has given me medical leave for another week, I am thinking of slowly easing back to work by working half day. I have no idea when the nerve pain will go away and so it is better I start work now that the blisters have healed. I am hoping that work will distract me from the pain or the irritation of the pain and numbness of my hand. And since I work half day, I can at least rest in the afternoon. I also need to work to earn money to pay my medical bill! I have since spent near to $1000 on this episode of shingles. Think more will be needed if the nerve pain persists. Lupus medication and regular follow up with blood tests also cost me a few hundreds per month. And as a lupus patient now, I also wonder what will come next. So it is better to have money given I have limited medical insurance coverage now. There is a saying - "one can die but not ill". I fully understand what it means since medical costs is really an issue if you are not earning enough. If not for this reason, I think I will quit my job and take a long long long rest before I think what to do next.

Coping with Pains Physically and Mentally

2011-03-11T23:45:00.001+08:00

I left the clinic feeling devastated and desponded. Doc extended my medical leave and I have to be reviewed next week. While the skin was healing, the nerve pain was not getting any better. Doc told me to increase Lyrica from 1 to 2 tablets at night. I asked him how long can I take this medication and he replied that some patients take it for weeks! Though I know it before hand that nerve pains can last for a long time as it also takes a long time for an inflamed nerve to heal, hearing it from my Doc somewhat made me feel worse. I asked him why the pain was more intense in the night that I could not even sleep and he told me perhaps it was I am more aware of it at night while there were more distractions in the day. What a logical but lame reason I thought. Anyway, I know at this stage, the Doc is managing my pain more than the disease itself.

I came home and felt even more depressed. The unbearable pain of my left hand and shoulder was still there. But the mental pain of me suffering from lupus and then shingles, causing inconvenience to my family and colleagues, reducing me to a dependable and unpredictable person suddenly became too much for me to bear. I wonder what I have done that I deserved this punishment. I wonder why my life was always full of obstacles. I was so tired, feel like giving up and disappearing from this world and not care about anything. I laid down on my bed and started crying non-stop.

I felt much better after the crying. Guess it was an outlet for all the emotions I was bottling up for weeks. Illness can be a emotion draining journey for many. But then, when I saw the images of the damages caused by Japan's earthquake and tsunami, I realised I am the lucky one who is alive here receiving treatment. My pain will come and go. I just need more patient and endurance. But for those who lost their homes, their loved ones and perhaps everything in all these natural disasters, their pains may never go away.

Lupus and Shingles (Herpes Zoster)

2011-03-10T16:48:00.001+08:00

I have been very busy with both work and family. And while I diligently and faithfully take my medication daily, little did I know I will be "gunned down" and be confined to home suddenly by this disease - shingles - in the midst of a busy working schedule! It seems that people with lupus are prone to this disease. Shingles or herpes zoster is caused by the same virus that causes chicken pox. When you have chicken pox especially when you are young, apparently the virus does not completely leave your body when you recovered. Some virus hide in your nerves and become dormant like a volcano. When your immune system is weaken, as in the case of lupus patient who is taking steriods and immunosuppressant drugs for a long time and probably due to stress too, the virus will be awaken like a mummy and create havoc to your life and give your pains that can be killing, if not unbearable.

It all started with hypersensitive skin at part of my left hand. Then this hypersensitiveness slowly spread to my whole left hand and arm. And I also experienced numbness, tingling feelings, pin and needles and ache on my my hand and arm. As for my left shoulder, I have this stabbing pain and sometime piercing pain from the back of the shoulder to my heart area which can be unbearable. I ignored the hypersensitiveness of skin initially as I thought it will come and go like those I experienced before. But when it didn't and spread, I went to see my doc. He initially thought that it is nerve pain caused by nerve inflammation - probably due to my lupus fare. He increased my prednisolone to 15mg from 6.5mg and gave me a new medicine, Lyrica for my nerve pain. I stayed home the next day and noticed that rashes appearing on my left armpit and hands. I called the doc thinking it might be an allergic reaction to the new medicine I took. The doc ordered me to see him immediately. Just a look at the rashes, he concluded that I have shingles. He prescribed anti-viral drug, valaciclovi and asked me to go back to same level of prednisolone.

I have innocently thought that shingles is like chicken pox. I was so wrong. The pain both on the skin and the nerve are unbearable at times. Sometime when my spirit was weak and the pain was killing (even when I took the painkillers), I secretly wish I was dead so that I need not suffer the pains. I told my doc about the ineffectiveness of the painkillers (panadeine) and when he changed to another medicine - ultracet - it was effective in reducing the pain but I have adverse reaction to it - dizziness and nausea which was so bad that I was reduced to staying in the bed for almost 2 days. I guess there is no such thing as having the cake and eat it too.

I am still on medical leave recovering from shingles. Typically, it takes about 2 weeks to recover from it. The pains are still there but the rashes are drying out. I have stopped taking ultracet and relying solely on Lyrica to cope with the pain although it is not very effective. When I told my doc that shingles seems to be prone among the lupus patients, he said with a matter of fact that it is a "balancing act'. While steriods and immunosuppressant drugs are used to control lupus flare, it inevitably that they also weaken your immunity and make you suspectible to disease like shingles. It is unfortuntable but it is definitely something lupus patients must deal with and somewhat come to expect it. Personally, I am quite depressed over it, having to deal with 1 operation and 2 major illness within a short period of 1 year. Not only my family suffered, my career and work is also badly affected by my "roller coaster" health.

Nothing could change the fact that I have lupus and my life will be more unpredictable with it. But no matter what happen, I just have to take one day at a time, and live life to the fullest as I could since I do not know what will happen to me next.

Living a normal life which may not be normal

2011-01-09T12:51:00.000+08:00

Life is slowly going back to "normal" but deep inside me I know it is "not normal" as before. Taking a cocktail of medication has become a new routine now. Though still clocking an average of 55 hours for work, I know my energy level is not the same as before.... and even shopping which suppose to be a "therapeutic" event can be a tiring task now. Tend to get infected by bugs and viruses easily since immune system is weak and probably due to immune-suppressing drug..... Many times, I just feel tired, uncomfortable and sick but for no apparent reasons. It's a feeling but I find it difficult to explain and express it to others. For others who do not know what I'm suffering from, it is probably my excuse to be lazy.... but even for my hubby who is very understanding and considerate, I think it is difficult for him to comprehend why I am fine a while ago but may suddenly feel unwell and tired all of the sudden.

Just like my hair loss problem. It could still be very bad a while ago, but all of the sudden, it stopped with no apparent reason and started to go new hairs. Not something I groaned about but it just goes to show that things are pretty unpredictable for me now. And now I am left with a new and unused wig made of 100% human hair. Wonder I should put it up for sale now :))

Viewing Lupus as a Positive Life Changing Event

2010-11-13T16:54:00.000+08:00

I somewhat believe things in life happened for a purpose. But as we are always forever busied ourselves in this world with so many demands and so many distractions, we do not always discover what is that purpose that certain things that happened to your life are trying to tell you.

Knowing that you have an unpredictable chronic illness like lupus can be a devastating blow to many.

For me - it slows me down at least for a while - it let me discover or reconnect with many aspect of life - warmth, love, priorities in life, reading - to learn about many things - impermanence of life, diet, ..... and of course writing, Things that were lost when I buried myself with the day to days demands at home and at work.

At least compared to the past, I am now more aware and appreciative of the things that happened to me and my loved ones - that's being present which is most important thing. I should not delve in things that have passed and worry too much about future that has yet to happen. I need not wait for all conditions that I have set to be happy to be happy. What is matter most is the present.... and I should always enjoy my time with my loved ones.

Without lupus - I suppose I would continue my life without much reflections - not with a life without a more meaningful purpose.

Fear of Hairloss

2010-11-05T13:04:00.000+08:00

It has been a crazy month since I went back to work in early Oct. Things and issues just cropped up continuously. While I tried to take things easy, it could be tiring at times and I also did not get enough rest. Blogging has take a back seat for a moment.

Doc increased my Azathioprine dosage to 100mg while he reduced my prednisolone gradually. But then, not sure whether it was lupus flare due to stress (dealing with issues and office politics!!!) or not enough rest or due to increased dosage of azathioprine, I started to experience severe hair loss in the last 2-3 weeks. For a person who have thick hair, watching your hair thinning at an alarming rate was not pleasant. I told my hubby and kid that it was depressing to know that I might get bald patches in the near future. But then, it was a case of no choice given my medical condition. Doc advised that I should continue with the medication and the hair would grow back when the recent active lupus was better under control..... Anyway, got to focus on what I have and not what I have lost. So meanwhile am on active lookout for a nice wig.....:)).

Down with thrush

2010-09-22T21:46:00.000+08:00

The last few days were tiring but fulfilling as I tried to resume my household routine given my increased energy. I went marketing, prepared meals and fussed around the house. It made me felt independent and useful again. I started to work from home slowly so to ease myself back to work. I took less rest compared to the past weeks.

Hubby was busy with his work and did not have time for his regular run. I think stress caught up with him and he fell ill with throat infection and running nose. Since lupus patients taking corticosteroids have low resistance to infection and guess I did not rest as much too, I got a sore throat just 2 days after he caught the bug. Immediately I could feel the difference in energy level. I felt much weaker and have to breathe a little harder as usual at times. I thought it was throat infection like what my hubby had. But my doc said it was fungus infection, i.e thrush, which was likely to have caused by the prednisolone that I was taking. Apparently corticosteroid is one of the medications that could upset the balance of microorganisms in the mouth and may cause thrush. I have never experienced thrush before and so this was something new that I learned. The doc was cutting down the dosage of my prednisolone slowly from current 40mg to 30mg and then 20mg for the next 4 weeks. Wonder how long it would take to cut down to 5mg and to none completely. On the other hand, he was increasing my dosage of azathioprine from 200mg to 300mg and finally 400mg (which was dosage based on my weight). Again, I wonder how long I need to take this medication since one of the side effects of long term consumption of this drug was damage of retina cells that could lead to blindness. For now, I just have to take one thing at a time and see how things go.

Meditation

2010-09-16T21:37:00.002+08:00

Since I did not want to rely on drugs to solve my insomnia, I looked for non-drug sleeping aids. I decided to try meditation since the sleeping pill given the doc was supposed to calm me down. I have tried meditation by focusing on my breathing while I was in the hospital. But guess I was just too impatient, frustrated and worried then that it did not quite work out.

I read in MM Lee Kuan Yew' recent interview with NY Times that he started meditation a few years ago. He did it to calm himself whenever he heard sounds of his bedridden wife's discomfort. And this was what he said “The problem is to keep the monkey mind from running off into all kinds of thoughts. A certain tranquillity settles over you. The day’s pressures and worries are pushed out. Then there’s less problem sleeping.” So I said to myself, let's try it again.

I read more about meditation. This is one web page I thought is simple to read and understand about meditation and sleep. http://health.howstuffworks.com/wellness/natural-medicine/alternative/natural-sleep-aids5.htm

Soon I figured out the key is practice and perseverance, especially for people whose minds are constantly in active mode, thinking and also worrying I suppose. I started slowly, trying to stay focus on the Present like my breathing or the movement of abdominal area. Like what I have read, it was difficult. The mind wandered easily. In any case, since I have nothing much to do and cannot sleep, I told myself just keep practising it. If it's work, good for me. If it's fail, I lose nothing since I can't sleep anyway. I repeated the process and kept focusing on the regular movement of my abdominal area again. After many repeated attempts over a few nights, I discovered my breathing began to go slower and my body felt more relaxed. I stopped when I felt my body was tired but relaxed enough. I got into my usual sleeping position but did not get too anxious 'trying" to sleep. My mind again wandered to many things and there were some I did not understand or have encountered. Before I knew it, I finally slipped into my dreamland the night before! While I still did not get to sleep through the night, I managed 1to 2 hours of quality sleep now. It's definitely a good improvement compared to the a few winks I have during the last 3 weeks!

Look Good and Feel Good

2010-09-15T23:05:00.001+08:00

It's hard to look good when your are ill and suffering. Yet for lupus patients, based on what I have read on the net and experienced so far, it seems one common exclamation from people is "but you don't look sick!" When my insurance agent visited me at the hospital while I was pancytopenia , I remembered one of thing he said was "you still look quite okay". Not sure whether he really meant it or he said that to console me then!

Anyway when you are sick with low energy, many of us don't really care much about our appearance. I was one of them. My hair was thinning and messy, I dressed sloppily and I felt lousy. After a few days at home, I decided that enough was enough. I trimmed my hair, resumed my skincare routine and took effort to choose my clothing when I visited the doc. While I don't look 'fabulous", I look neat and I feel good.

Guess when you feel good, self-worth and self-esteem increase and so is the energy level (of course with the help of medications!). I am now able to do some housework and other stuff without the sense of uselessness or helplessness.

Stress Triggered Lupus?

2010-09-14T22:47:00.001+08:00

My close friend texted me to say based on her doc she saw during her regular medical review , lupus can be stress triggered. So she advised me to stay relax not only for now but especially when I go back to work. She understood very well that stresses, negative emotions like fear, anxiety would always ensue in the workplace.

I told her not to worry about me and joked that given the research and reading on lupus I have done so far, I am a quarter of a lupus' expert, if not a third. While it is not conclusive, stress seems to one of top triggers for lupus flare. Given stress means different things to different people and my GP once told me there would always be stresses in life, but the key in the degree is how the individuals manage or cope with these stresses. For one who manages the stress well, that stress is motivational and healthy. But for another person who is facing difficulty in managing that same kind of stress, then that stress becomes destructive. So now I am kind of hypothesising personality or character such as those with Type A personality traits (i.e. perfectionist, competitive, impatient, time urgency, achievement-oriented) can a predisposition to trigger lupus. Since one is always so tense-up and work up, the immune system also follows. So overtime, the system also gets "job" burnout, loses focus, slowly goes haywire and finally cannot even differentiate the foreign or own cells in your body!

Anyway, I cannot change the fact that I have lupus now. But what I can do is to adjust my lifestyle and career to work around it positively. Sometime I wonder my positiveness now is the side effect of prendisolone (since euphoria is one such side effect!). I do not know for how long I can sustain this positive attitude, especially when lupus flares up and you are suffering from it. But I certainly do not like to make my loved ones suffered because of me. Having been through 2 major illness within a short span of 6 months, you would know that when you are ill, the ones who are feeling more stressed may be your loved ones as they have to watch you suffer.

I saw this quote somewhere that I cannot remember: "the happiest people are not those who have the best of everything but they are ones who make the best of those things that they have". So to be happy, I just have to make the best of the current me! Love ourselves so that we can love others.

So Now what's for Work?

2010-09-13T16:04:00.003+08:00

I have a demanding and stressful job. But I am blessed with a good boss and supportive colleagues.

Knowing that you have lupus means you need to acknowledge your limitations. I tell myself there are things at work and life that I need to adjust if I want to keep my illness at bay. Thich Nhat Hanh, a leading monk and scholar of Zen Buddhism that I read in yesterday newspaper said and I quote him: "Without first knowing and loving ourselves, it is difficult to know and love others". So for me, I take it to mean aware of and accept what I am capable of doing now and what is happening to my body now so that I know when to charge and when to rest and relax. If I can do these well, it will keep lupus in remission. It is only with a heatlhy and positive me that I can know and love, attend to the needs of my loved ones and support my colleagues.

One of the things I adjusted is work. My medical leave ends this week, although the doc told me to let him know if I need more rest. I think it is better if I can ease back to work slowly since I still get tired easily especially with no quality sleep (yes, I am still dealing with my insomina as I do not want to depend on medication). My boss readily agreed to my idea of working from home for 2 weeks before I go back to office physically in Oct. With this arrangement, I can start to do some work, but lie on the bed to rest if necessary and it will also reduce infection risk (since air-conditioned office is full of virus and bugs and there will always be someone who is sick at work ;-).

Thank you boss for your understanding! But this is not the end. There may be more adjustments I need to make when I go back office. One thing I have decided is no more working late in office everyday. Work can wait but not health and life. I will now Work around Life. Life is certainty not just about and around work.

Lupus and Dog

2010-09-11T17:06:00.000+08:00

I have a family dog. While I was in the hospital, we decided to send him for dog-sitting since he is very active/playful and the doc said I must guard against infections. This would also help to lessen the stress on my hubby as he was busy with work, household chores and of course twice a day visits to the hospital then. I was grateful that my kind sister-in-law readily agreed to be the dog sitter for us for as long as we need.

While I was home, I tried looking up the net on whether lupus patient could keep pets especially dogs. But all I could find was lupus is a disease that happened to dogs too! Wonder anyone with lupus out there could share with me their experience with their dogs? Anyway, given my dog is a hypoallergenic breed, we have since decided to fetch our dog back this weekend. We miss him!

Bye Bye Medical insurance

2010-09-11T16:42:00.005+08:00

In Singapore, medical insurance is voluntary although medical savings is compulsory. I was on this basic medical insurance (basic as we could upgrade this scheme into one with higher payout) since I started working years ago. In 1995, I was diagnosed with mitral valve prolapse (MVP) during a routine employment checkup. Apparently, this was a genetic condition (since birth) but guess it was not picked up since I was asymptomatic all along. Since then, all the insurance policies I took up would exclude heart valve surgery as a critical illness for me due to this pre-existing illness. My insurance agent advised me to keep my basic medical insurance scheme since it would cover heart valve surgery given it was contracted before I was diagnosed with MVP. It was a wrong move looking at it now.

While I was in the hospital waiting for the bone marrow result, the doc asked whether I was covered by medical insurance. I asked about the cost of bone marrow transplant if I needed one and was told for first 3 months, the estimated cost could range between $150,000 to $250,000 if it was done at the government hospital assuming no complication. There were other costs like medications and follow-up for the rest of the life. It was then I checked up my medical insurance and realised how inadequate it would be when a major illness stuck you. Not only there were conditions about deductible and co-payment, there was a cap on total $50,000 payout a year and a total $200,000 payout per policy. And when I was diagnosed with lupus and wonder whether any insurance companies would underwrite me for hospitalisation and medical costs, I realised that even for basic medical insurance I had, there was this condition that the person must not be diagnosed with systemic lupus 12 months ago before the effective date of the policy. That means I would have no chance ever from now to find any insurance companies that would cover my medical cost since I am a high risk customer and if they really do, the premium I need to pay would be exorbitantly high that I must as well underwrite the risk myself!

Morale of my story: buy a comprehensive medical and hospitalisation insurance (better if it comes with payout for loss of income) while you are young and fit (i.e before any pre-existing illness)! No one is invincible but when you are ill, at least you have one less worry.

Confusing Urine Test Result?

2010-09-10T19:36:00.001+08:00

I have another appointment with my hematologist to review my bone marrow result on the same day I saw my rheumatologist. The rheumatologist clinic has kindly agreed to fax my blood test result to my hematologist so that I did not do another blood test on the same day.

Hooray! Blood test showed that my white blood cells and platelet counts have gone up to the normal range finally! Red blood count has not really gone up but I took comfort that it was at least stable. The hematologist also explained the bone marrow results. There were some atypical cells which are responsible for producing the platelets but the results were inconclusive. Given that I have been diagnosed with lupus and that my counts have increased, he was of the view that it could have been the cause of lupus. Bottom line was if you control lupus well, this problem would disappear too. It seemed that when you have lupus, suddenly many things could be explained by it. Ha..ha... But then, what if something else besides lupus is the cause of it? Guess nobody even the doc really know and this is what make lupus scary and unpredictable for many.

In my blood test report, it also contained the urine test results. Briefly, my hematologist explained that I still have proteins in my urine but the test for the kidney function seemed okay. One thing strange is having white and red blood cells as well as bacteria in the urine. This might suggest infection. I immediately thought of UTI (urinary tract infection) or vaginal infection given I need to urine frequently and was having some abnormal feelings around my vaginal area ever since my menses started with little spotting and then stopped completely suddenly about a week ago (which the doc said could be due to lupus or the medication, sighh...). Since the test was not ordered by the hematologist, he told me that he would leave it to other doc to review and explain more and see whether antibiotics was required. I went back to the rheumatologist but he already has gone for the ward visit. I would have to wait for his call then. Good luck to me!

My sleep and Imovane

2010-09-10T15:35:00.003+08:00

Feeling weaker and more tired today. Wonder whether it was because I was out for almost a full day attending to 2 doc appointment yesterday or the effect of "Imovane".

The Rheumatogolist reviewed my conditions and suggested that I kept to my current medication dosages (i.e. 40mg prednisolone, 50mg azathioprine, 200mg and 400mg plaquenil on alternative days) for another 2 weeks. He also ordered blood and urine tests. About the sleep problem I was experiencing, he said it could be due either to the lupus or steroids (steroids may cause hyper-activeness). And since it was important for me to have good rest and sleep, he prescribed 7.5mg Imovane (i.e. Zopiclone), which he said was not a sleeping pill but would help me to sleep. Based on what I read from the net, this drug is a form of depressants that is used to treat insomnia.

Hopeful to get my long lost undisturbed 6-7 hours sleep back, I took one tablet yesterday night. Sadly, the outcome did not turn out to what I have expected. I was light headed but heavy on feet about an hour after I took Imovane. I think I fell asleep for about 2 hours and then I was awake! again I tried going back to sleep, but it wasn't easy. I tossed and turned for the next few hours although I could sense that my mind was less active - thinking less compared to the last few days, but I just couldn't sleep. Then at about 5am, my heartburn came. I drank a can of ice-lemon tea while I was out and guessed this could be the culprit. Felt better about a dosage of antacid but it did not last very long. So I took my usual omeprazole medication in the morning to lessen the pain and discomfort. Thanks goodness, it helped but I was still tired without a good night sleep.

Early signs of lupus?

2010-09-09T15:46:00.001+08:00

Now with hindsight about the various non-specific symptoms of lupus, I think I might already have this disease sitting quietly in my system sometime ago before I was "officially" diagnosed with it. I go for medical screening annually. For those years (esp from 2006 to 2009) where the screening involved comprehensive blood test, the reports said I have low white blood cells - specifically Lymphocytes based on the reference range. But it would always say that it could be due to recovery from recent infections and it is not clinically significant. I discussed this with my doc during the previous visit, but he would not want to comment on it since the other results about liver, kidney and urine showed no abnormalities.

About a year plus ago, I also started to experience sudden pain or nerve sensitiveness on my fingers and toes. Such pains and ultra sensitiveness come and go. My GP pinned it to nerve inflammation problem. Taking Synflex - an anti-inflammatory medicine helped to solve these nerve problems. But at one time, my GP sent me for a hand x-ray thinking I might have thing growing in my thumb given the pain I was experiencing! Of course, the result was negative.

I was also diagnosed with high blood pressure about 3 years ago at a age of 37. Quite young for hypertension though not uncommon these days. I attributed it to my stressful work life then. Now looking at it, it could have been triggered by lupus, but no one would know for sure really given the unpredictability of lupus. I also experienced more and more ocular migraines in recent years where I see small, enlarging blind spot in my central vision with bright, flickering lights or a shimmering zig-zag line inside the blind spot. The blind spot usually enlarges and may move across my field of vision. This entire migraine phenomenon usually lasts about 10- 20 minutes. Based on what I have read so far, such migraine has something to do with the changes in blood flow in the brain.

Guess all these unspecific and seemingly unrelated symptoms of mine are early signs of systematic lupus. But then, it would take a serious flare up like this recent one - pancytopenia - to conclude that I am a lupis.

Sleepless day and night

2010-09-08T17:02:00.001+08:00

I have not been really sleeping since 3 weeks ago, no matter how tired I was. It was not as though I have been sleeping in the day and thus unable to sleep in the night. I was unable to sleep both at night and day and if I did, I have trouble staying asleep for more than half an hour. I tried different methods like eating a banana, warm milk, etc to induce sleep but to no avail. Sighhh... My brain seemed to be forever active even though I tried not to think about anything (symptom of depression???). Even in the brief moment I thought I felt asleep, I was dreaming since I was able to remember what those dreams were. The sleep problem was made worst with frequent urination in the night. Like last night, I went to the toilet every hour! That's was unthinkable and this frequent urination only happened in the night and not daytime. Wonder what doc is going to say about this tomorrow.

Changes in Taste buds

2010-09-08T14:19:00.000+08:00

Wonder anyone of you with lupus experienced change in taste bud during the flare up period. I was having this bitter taste initially when I have poor appetitte but before I know about my lupus condition. I earlier thought it was GERD - acid reflux that was causing the trouble. I overcame it by eating sweets but it was only temporary relief. My tougue was also coated with thick layer of whites. I constantly have dry throat especially at night too. Then, out of the sudden, think when I was hospitalised, even the plain water I drank tasted a tab funny kind of sweet - but not the kind of sweetness that I would like. I asked my hubby whether there was any difference in water I was drinking. He drank and told it was normal water taste. I concluded that it must be me then. While the bitterness of the tougue has gone away, the funny sweet taste of water stayed with me until yesterday. For once, I noticed and was happy that water finally tasted like water!!! But then, it lasted a day and the sweetness of water came back today again..... sighh...Now I understand why lupus can be unpredictiable at times.

I also did not know that Prednisolone tablets taste so bittter that I have to take a sweet everytime I took them. No amount of water could get rid of the bitternesss of the tablets. Wonder why the pharma companies cannot make it at least taste more neutral or at least marred the bitterness with a layer of coating that would dissolve in the stomach and not leave the bitterness in your tongue....

Hope for Increased Blood Count

2010-09-07T20:20:00.000+08:00

Guess the medications are working. I am feeling better with more energy these 2 days. I was able to do light cooking (oh yeah, I felt great to be able to cook a meal for my child) and simple housework chores like laundry using the washing machine. These were things that would be unimaginable during the last weeks of August. I could not at times lift up my hands and arms then. Even texting on the phone then required tons of energy from me.

I monitor my eyes to see whether I can see "red" blood vessels under eye lids everyday as they have been extremely pale due to the low red blood cells count. I saw some red vessels and would like to conclude that my bone marrow has started to produce blood cells as I am feeling better these 2 days. But these need to be confirmed by blood test on this coming Thursday when I see both my rheumatologist and hematologist. I am also curious about white blood cell count. Wonder it has stayed stable or drop.

Sleep is still a problem. Think I would talk to the doctor about my insomnia .

Another Milestone of My Child

2010-09-07T15:33:00.000+08:00

My child has entered into a new phase of her life today. Secretly glad that it happened while I was at home and not in office. She started her first period - menarche today! I have been preparing her for this event months ago. But guess nothing beat the real thing when it came. I reminded her about some hygiene pointers about menstruation and the implication of menstruation. It meant her body is matured and capable for reproduction. So she needs to take extra care about herself too. We talked about sex but I could sense her embarrassment and uneasiness. Anyway, I told her to approach me anytime if she has questions about her body and other things that may be bothering her. It's better this way rather than she gets misleading answers from her friends. She told me she was fine, just like it would be "troublesome". I could not agree with her more, haha!!! Welcome to womanhood, my gal!

Love and Kindness from Many!

2010-09-07T15:17:00.001+08:00

The past few days have been days of warmth and hope for me. Many of well-meaning colleagues and friends who knew I have not been well have been praying for me. On Sunday, I received a flower and fruit basket from my colleagues. In the message, it said "Rest Well, Our Dearest Boss. We missed you and hope to see you soon...." It warmed my heart and being a human being who needs self-assurance, guess it was always good to know that there were people besides your family who cared about you. I sent thank you message to them and told them I was very blessed with supportive colleagues and kind friends like them. But I also told them my recovery would be slow but I hope for a steady recovery. One of them told me most importantly I must get well. She also reaffirmed me that I was a good boss. Wah! That made my day knowing I have been doing something right all these while! Nevertheless, I still need to continue to learn to be a "good" boss as each individual is different. There is no one size fits all method. Most importantly, I think as bosses who are in position to influence, mentor and reward staff, we need to be fair and help bring out the potential and capacity of each individual so that they can feel that they are learning, growing, rewarded and also contributing both to the organisation and the society.

On Monday, I had another pleasant surprise. My neighbour, a 60 plus years old auntie visited me with bird nest, fruits and other stuff. I was overwhelmed by her concern and kindness. Wonder how she knew that I was not well, she told me that she met my hubby and my child while they were on the way to visit me at the hospital. We had a nice chat and she told me to approach her if I need any help. That's was very very kind of her. I was so touched and inspired by love and concern that human beings can show to one another, especially in this rat race and individualised society.

I have had another surprise in that evening when my 70 years old mom personally came with my dinner in the rain. My hubby was working late and could not get the dinner from my mom's place which was about a hour bus journey away. My dad who was the usual one who come to my place was tied up with renovation work which was going on at his place. My mom decided to deliver the dinner right to my doorstep! I was so so guilty that she did that for me. We had a nice chat and when I wanted to call taxi to send her home she stubbornly refused and went off in the rain. I felt so bad and guilty that evening even though I know she did that out of love for me....

I must take good care of myself and get well soon. The greatest gift that I can give to my family members is a Healthy Me. Then, they need not worry about me and I can also do things for them!

Hair Loss and Increased Appetite

2010-09-05T18:09:00.001+08:00

One of the classic symptoms of lupus is hair loss. I am no exception. Lupus medications can also cause side effects like hair loss. I notice my hair is thinning recently. It is quite unnerving at first for someone who is used to have thick hair. But I'm taking it in good stride. Most of the information I read said that it is a reversible problem. Hair loss will subside once lupus goes into remission or when the medication is stopped. Meanwhile, I just have to live with lesser hair but hopefully not patchy or bald head.

The other side effects of the steriods is increased appetite. It seems that I am constantly hungry. Not that I complained. Between loss of appetite like weeks before, I prefer the situation now that I can eat. I enjoy food and it was a torture for me when I could not eat! I try to eat a balanced diet and lots of vegatables and fruits. I am very grateful to my mom who prepare my home-cooked dinner regularly. Bon Appetit!

Learning to sleep

2010-09-05T17:52:00.001+08:00

My kid has a wonderful evening yesterday She enjoyed her performance tremenously and said that she would like to do it again. I was happy that I played a part in this milestone of hers by ensuring she have a neat bun and pretty make-up before she left for her performance.

I was exhausted after that. I tried to rest by sleeping. But as usual like the past weeks, I could not fall asleep and ended up lying aimlessly on the bed. I was already having difficulty sleeping the last night. I managed to catch a wink or so for a couple of minutes between 1 to 3am and have been stayed awake since then. Frequent night urination with 1 and 1.5 hours interval also disrupted my sleep. This has to do something with the kidney problem.

I do not like sleepless night but guess I just need to cope with it calmly. No point fretting over it and let it cause more stresses to my brain and body. Lying and relaxing on the bed is a form of resting too. Soon, my body and mind will learn to sleep easily again

Oh yeah, found some tips on this webpage about sleep.

http://www.uklupus.co.uk/sleep.html

Missing a concert of my kid

2010-09-03T21:56:00.000+08:00

My kid will be performing at a ballet concert tomorrow. It will be her first ballet concert performance since she took up ballet at the age of four. Too bad with my condition now, I will have to give it a miss. Luckily, my good friend and her child whom is also my kid's best friend will be there to support my kid and help me take video/picture of hers. Nevertheless, I will definitely help my kid to put on a nice make-up and hairdo so that she has a wonderful and memorable experience and time with her friends. I look forward to a healthier me so that I can attend her next ballet performance. Wish me luck!

To Tell or Not to Tell

2010-09-03T16:29:00.001+08:00

We were having dinner the other night and the conversation was on my lupus condition. I mentioned that I would want to keep my condition known only to my immediate family members and a close friend. I would not want to let my colleagues and others know about it, although many well-meaning people were asking what happened to me. My child asked why? I told her I want to live normally as far as possible and would not want people to look at me differently. In the US, apparently lupus was listed as a " disability" which qualified people with this condition with some state benefits or rights. I said there were still many people who have misconceptions about lupus thinking it was an infectious disease (perhaps due to it's name or perhaps because of the rashes/skin conditions that lupus tend to cause) or it was something related to AIDS since they both were related to immunity system. She laughed! Guess she was laughing about the ignorance of these people! But she promised she would not tell others about my illness.

Learning about Lupus Medication

2010-09-02T18:21:00.001+08:00

Hubby was worried about the side effects of corticosteroids (50 mg Prednisolone) and hydroxycholoquine (200mg Plaquenil) that the doctor prescribed. But at this time when my lupus was hyperactive and was suppressing my bone marrow function and affecting my kidneys, the benefits outweighed the side effects. Prednisolone would suppress my immune system while Plaquenil was an effective drug that would help to treat SLE, esp those with skin and joint involvement. I was also given calcium and iron tablets. Apparently prednisolone would soften the bones and it was better to have high intake of calcium to prevent it. Iron was to supplement my blood as I was still having low blood counts.

I noticed that once I took the medicines, I could almost feel my body becomes weak within 15 -20mins. And this feeling would last for an hour or so. Other than that, I was fine. I was secretly glad that the prednisolone increased my appetite - at least I could eat better now. Nevertheless, it may come to a point that I have moon face and gained weight which are all side effects of the drugs.

I continued to have sleep problems, dry throat and frequent night urination. Think these were caused by lupus and not so much of the drug side effects since I was experienced these symptoms before I started these drugs.

I went to doc for follow-up today. He explained to the blood and urine test results that he did one week ago. He told me no doubt I have systemic lupus (SLE) and it was suppressing my bone marrow function. It seemed that there were cases where the lupus is attacking the blood cells directly which was not my case. He explained more about the drug use to suppress my immune system and told me that he would start me with 50mg Azathioprine - an immunosuppresive drug. At the same time, he would reduce the dosage of Prednisolone to 40mg. I told me about my appointment with my eye doctor and he wrote me a letter indicating I have SLE and the drugs I was taking and requested for an eye screening. It seemed that side effects of these drugs plus lupus itself would include eye problems and so it was important to have regular eye checks too. I have to see doc in one week time and he would do a blood test to monitor my blood, liver and pancreas functions since Azathioprine may have side effects on these 2 areas.

During the visit, I also asked the doc about whether I could live normally and when I could go back to work. He advised that I could eventually do that but with caution and prevention such as taking the medications diligently, having enough rest, preventing infections and managing stress since it may trigger flare up of lupus. Meanwhile, I should take things easy and rest more since my lupus was in active stage.

How did I discover that I have systemic lupus

2010-09-01T22:53:00.002+08:00

It's been a while since I last wrote on the blog. I have decided to come back to record the feelings and the emotions that I experienced since I was told by doctor that I have lupus - a chronic condition where my immune system goes haywire and attacks my own tissues.

It started with a cough that did not go away for weeks. Since western medicine did not help, I decided to try TCM in early Jul 10. I was told that I have a weak lung and was advised to avoid cold stuff. One week after the TCM medication, I started to experience breathlessness, weakness and fatigue. I also have extremely dry throat and frequent night urination. The TCM doctor changed the medicine and I continued it for another week. But things seemed to get worse. I lost my appetite but keep thinking it was my gastritis acting up. I got tired easily and lose concentration easily. At one time i was so tired that I even have to take a lunch nap at work, which was something that I have never done during my whole career life. I stopped the TCM and went to my GP who could not quite pinpoint what was wrong with me since my symptoms are non-specific. He did ECG, chest x-ray and diabetic test and they were all normal. Urine test showed high level of protein and blood though. He asked me to do a comprehensive blood test and it turned out I have abnormal high level of enzymes in my liver and extremely low blood counts for red, white and platelets. Urine test continued to show high level of protein indicating kidney was not functioning well and leaking protein. He advised me to be admitted to hospital asap and fixed an appointment with a respiratory and internal medicine specialist the next morning.

The specialist saw the blood test results and ordered kidney ultrasound immediately, which turned out OK. He also arranged for my admission - with isolation. He was worried that I might get infection easily as my white blood cells were critically low then. Serious infection at that moment would be life threatening for me.

At the hospital, more blood tests, including that of auto-immune diseases followed. They were drawing my blood for testing everyday. On the second day in the hospital, I developed fever and was given antibiotics intravenously to treat the infection. The antibiotics made me nausea and uncomfortable. I lost my appetite completely and could not eat. With my low blood count, I also suffered from breathlessness and body weakness. I lost all energy in me and could not even lift my hands up. It was a terrible feeling and at times I felt like dying.

The specialist also got another specialist - a haematologist to see me on the 3rd evening of my hospitalisation. He did a bone marrow test the next morning. This was to determine whether I have abnormal bone marrow cells - i.e. cancerous cells like leukaemia or other underlying bone marrow conditions that were preventing it to producing blood cells. While the pain of bone marrow test was very bearable, it was not so for the wait for all test results, esp if it turned out to be bad news like leukaemia. I started to worry a lot on both the emotional and financial strains that it may have on my family. I also worried about my only daughter who may have no one to turn to should anything happen to me. Not knowing what was wrong with me also frustrated me a lot. I could not sleep - not sure whether it was due to these worries or due to my underlying medical condition.

On the 5th evening, I received news from the doctors that prelim results showed that bone marrow cells seemed normal - it was good news to me, although the bone biopsy results would still take a while to be ready. Nevertheless, I was relieved. The haematologist also decided to give me a HGF jab to increase my white blood cells on that evening. This would help me to fight infection. I responded to the HGF jab very well, my white blood cells increased to the normal level the next day.

Since my fever has subsided and I could not really sleep well in the hospital, I begged the doctors to let me go home to rest. The doctors finally agreed provided my blood counts were stable and I would go back to the clinic for blood test regularly. I went to the clinic 2 days later and it was then the haematologist told me that my auto-immune disease test result - i.e. lupus was positive. My low blood count was mostly likely caused by lupus attacking my bone marrow. He arranged an appointment with a Rheumatologist - a doctor who specialised in lupus to see me immediately. The Rheumatologist confirmed that I have lupus and started me with high dosage of steroids to suppress my immunity system immediately. He also ordered more blood tests and 24 hours urine test. And I would have to see him again in 5 days time.