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.

Managing Prednisolone Withdrawal Symptoms

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

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

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)

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

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

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

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

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

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

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?

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?

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

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!