Search Results for dercum's disease
Family members and friends have enquired so perhaps it is helpful to explain what I understand about my medical condition.
I have an unusual and excessive growth of lipomas. These are fatty deposits. I think my body doesn’t know where to channel or how to process fatty acids so it gets dumped in random parts of my body. Some people have one or two lumps but I have a lot more. Having multiple lipomas is called Dercum’s Disease. According to NORD, “Dercum’s disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously).”
This is an uncommon condition, so rare that there is no known cause and no known cure. I am just thankful there is also no known danger. Apparently, these folks are most prone to Dercum’s Disease: older obese menopausal women. I fit none of the above four categories. None in my bloodline have it too. So I trust God for having a purpose in my pain.
Well, I need to remove these thorns in my flesh because they cause pain and discomfort. Some lipomas grow over nerves so it is painful when pressure is applied — like when Eden steps on me, or I get tackled during football, etc. Some lipomas grow in inconvenient places so it becomes uncomfortable — like on my wrist so it affects typing/writing, and on my back so I can’t lean against a hard surface (like a chair) for too long.
Yesterday’s surgery was my third. The first in 2007 was under LA, removed three lipomas. The second in 2010 under GA removed 25. This time, also under GA, another 20+ were removed. It is obvious that the lumps have increased with my weight gain; I’ve put on about 10 kilograms in the last decade. Most of the lipomas are on my arms, trunk, thighs and groin. I’m thankful that it’s not on my face, neck, palms, feet or on any joints. By God’s grace all these lumps are benign. The truth is, because this is not a life-threatening condition, it doesn’t scare me into a drastic change of lifestyle.
Unfortunately, I only bought my insurance after my first surgery so I can’t make claims for this treating pre-existing condition (the proper name treatment is called excision and biopsy of multiple lipomas). But God is good. He’s always provided for every operation and I trust him to continue to provide for my needs. For example, this time, the Lord’s providence came in the form of the surgeon, who is my church friend, and he has helped me defray the surgery costs and ensured that I have good care. I am grateful to God for him. Pray along with me that the group hospitalisation plan that the church purchased for pastors would be able to pay for this surgery.
The two to three-week recovery phase is always the most challenging because my mobility is significantly affected. Simple activities like sleeping and sitting (where I put weight on the wounds) and showering (potentially wetting it) or even using the bathroom can become troublesome. But the most arduous task is changing the dressing. Each dressing costs $2.50 (sigh) and I may have to change some wounds twice a day. There are also some wounds (on my back) that are beyond my reach so I need others to help me change it. So sometimes changing dressing and applying scar-reducing cream can take up to an hour.
I am grateful for family members and friends who have uplifted me in their prayers — thank you for raising your shield of faith for me. Every prayer counts. I am also believing that God my healer will one day heal me completely of this condition. Perhaps there’s a miracle waiting to happen with my body and I look forward to it. I have faith in God and I trust in His plans. For now, I shall look forward to my two weeks of rest and recovery, and I believe by faith that this surgery will be the last of my lipoma-related condition. Amen. God is good!
And yes, I’m going to make some lifestyle changes…
We have arrived at the end of our mini-sabbath… And it has been a good one that I am thankful for. Today’s programme was even more relaxing than yesterday’s. I slept in ’til the late morning while Huiyi and Ervina had D&M at a coffee joint in Fremantle. After that, we went to North Bridge Road (coincidentally also Perth’s Chinatown) to have lunch at the Vietnamese restaurant Tra Vinh. Then we headed to Coogee Beach to enjoy a beautiful sunset before returning home to enjoy home-cooked chicken and pork ribs curry prepared by Granny Aw. She treats me like her grandson. (:
So, I’ve decided to write something alternative on the eve of my departure from Down Under. Sounds untypically cryptic for me to write in a pessimistic manner, but here goes – my eight regrets on this trip (so far):
1. Oversleeping and missing the annual Anzac Dawn Parade today; not that I planned to go for it anyway…
2. Not reading any of the books I brought along; instead I bought three more at CS+E’s church.
3. Not dining at the famed Ciao Italia because it’s closed until 29th April; I need the tiramisu… NOW!
4. This is the biggest bummer of ’em all – not hanging out with Liang Zhi; I haven’t had quality time with him in years!
5. Not meeting up with Ps Benny as our schedules didn’t coincide; I was on a road trip on his free days.
6. Not asking Granny Aw to pray my recovery from Dercum’s Disease; I’m going to strike this out tomorrow though.
7. Earning a surface scratch on Liang’s car with a dustbin that I couldn’t see with either mirror; I’m flabbergasted.
8. Not applying medication to my huge ulcer below the tongue sooner; ulcers have a way of tainting any experience.
Less than 24 hours before Huiyi and I return to Singapore… I’m looking forward but I’m also feeling bittersweet. Won’t we all after a good break? (:
Rocking it out at Coogee Beach with air instruments…
Those who follow my blog and know me personally would remember my association with Dercum’s disease, a collection of fatty deposits all over my body. I went for my routine (every 6-9 months) check-up today and it left a deep enough impression to blog about. I spent the chunk of my day with Keith Yeo and I was glad he was there to witness what happened.
A quick background – each check-up costs about $70 and lasts no more than five minutes. Today, I arrived on time and waited 40 minutes before I was served. And I was done within one minute – Keith’s surprised expression when I exited the room verified the swift consultation that just transpired. While I was treated by the best in the business, today’s check-up amounted to $65, or about $1 per second. Cut throat? You tell me.
I walked to the counter and was ready to pay, but as I took out my wallet, I felt uncomfortable – that’s not cost-effective at all! I spent all that time waiting to be told something that I already knew from the last visit – that regrowth is normal and that I should wait for a lot more lumps to grow before I decide upon another operation. So I decided to walk back to the room to perhaps, negotiate with the doctor.
I knocked on the door gently as there was another patient in the room but the nurse curtly shooed me away. The way she told me to take a seat was rude and unnecessary but I tolerated it and waited as instructed. A couple of minutes later, the patient left the room and I entered it.
Before I could even present my case, the doctor suddenly became extremely defensive and started to put words in my mouth.
“If you feel it’s a waste of your time, you can drop the case immediately.”
“If you want a subsidised price, you can close this case and reapply through a polyclinic.”
“If you think that I’m overcharging you, you can always change a doctor.”
And all these were fired at me before I could even utter a word.
Now, I was caught off guard because this wasn’t the doctor whom I’ve interacted with for the past three consultations. And certainly neither professional nor acceptable for a man of his stature. I was taken aback and I stopped him in his tracks.
“Doctor, why are you putting words in my mouth, when I haven’t said anything at all?”
“Why are you behaving so defensively and taking this so personally?”
“All I wanted to do was to come in here to clarify the fee, but I was quite ready to head out to pay the full amount of this consultation.”
“If anything at all, I don’t think I’m the kind to be unreasonable – I just needed to hear an explanation.”
“Why did you jump to so many conclusions before I even asked you anything?”
“I think you should have a word with your staff about the things she told you before I came in…”
I think I must have caught him off guard too, with the way I retorted his (baseless) accusations. And I think he didn’t see that coming from someone who’s probably half his age. He composed himself after a couple of more defensive statements and I remember counting three verbal apologies from him; it was a professional apology though, not a genuine one. But I decided to be gracious about it so that he had some space to 下台 (retreat).
I couldn’t help but to assume three preconceived ideas he had before our little exchange:
- his nurse fed him with the wrong information
- he felt that I was about to attack him professionally and personally
- he probably had a bad day
I left the room feeling confused but something that annoyed me more was the injustice that I experienced. I felt maligned. I believe the medical staff owe me an apology. I was surprised though, that I didn’t lose my temper during the exchange. Instead, I spoke calmly, gently yet assertively. I asked the Spirit to help me respond like Jesus. Still, I left the hospital feeling 不爽 (unsatisfied).
On my way home after leaving Keith, I brought this before the Lord and asked Him to help me make sense of it. I haven’t heard from Him but I am glad that in my anger, I did not sin. Conversely speaking, I’m proud of my conduct and my reaction in the aftermath.
So this is what I am going to do now… I’m going to write this doctor an email to affirm him of my appreciation of his skills and expertise, make him reflect upon his (regrettable, haha) words and actions, close this incident, ask for his composed response to what happened today and tell him I look forward to see him again two years later at my next appointment with him.
Finally (and this is where you can join me), I am going to pray that this would lead to a divine opportunity for me to share the Gospel with him. Of course, I may not get a reply, but if you never ask, you never know.
Yet another classic quote by the legendary RW that drew resounding laughter from the congregation. I love it when this man speaks – be it over the pulpit, vis-a-vis or in a meeting – he talks with aplomb, littered with audacity, authority and authenticity.
For those who attended the combined service at GII today, you’d have downloaded an excellent sermon preached by RW on the topic of faith. HY and I responded to the altar call and it was my first response at the altar as a full-time staff. What I thank God for was that this message did not make me think, “Yes, I can do it!” or even, “Yes, God can do it!” but it forced me to step back and ask, “Do I trust God about it?” For if I do, then I should also trust Him for the process and outcome.
Like many others who attempt to pursue God seriously, I too have countless questions regarding faith. RW gave a good reminder that true faith is based on the word of God – that when it’s beyond my ability to accomplish it, I still believe in my heart that it will be done. We ought not to place our faith in the things of God but in God and His attributes; that signals the activation of your faith.
I remember a cognitively spiritual (or spiritually cognitive) battle at the turn of the year when I asked for a second opinion regarding treatment for the Dercum’s Disease in my body. (Read these two two recaps if you want the context.) From when I discovered the first lump at 14 years old, to the day that I scheduled a surgery to remove all 25 in my body, I’ve asked people to pray that God would miraculously remove every lump; I prayed that myself too. But as soon as the operation date was confirmed, I realised that people started to change the way they prayed for me.
Now, why doesn’t the original prayer retain its contents after people found out that I’d be heading for an operation? Where is the faith that existed before surgeries and operations were medically possible? This got me thinking about whether we trusted more in modern science that medicates or in Jehovah Rapha who heals. Is faith then determined by what we already know and are sure of (the surgery that would remove all lumps) or by what we do not know and are unsure of? How am I supposed to apply the Hebrews 11:1 definition of faith into this given context? Have we pigeonholed our faith and allowed our eyes (i.e. walking by sight) to determine how and what we pray for? How can we rise to another level of faith? I still haven’t found satisfactory answers to this series of questions so I will continue to mull over it.
That aside, faith does not presume – I’ve learnt that presumption could lead to hurt you and your faith or both. RW casted such a timely reminder that “good” (in the context of Romans 8:28) may not be God’s best for me. In reality, it is in the difficult times that the heroes of faith are born. Regardless of how small or little our faith is, we should exercise it, act upon it and learn to embrace the challenges that come with it!
When we juxtapose Hebrews 11:33-35 with 36-38, we must remember that those who suffer for the faith are very much in the will of God as those who experience miracles and answered prayers. In light of irresponsible and suicidal “Name It, Claim It” prosperity teaching, there may be pockets of Christians who only see positivity as part of God’s will for their lives and reject the other side of the coin. Those who are undergoing a tough time may struggle to see or understand God’s purpose in that moment – so they need to exercise even more faith than those who are going through a good time and enjoying fruitful outcomes. God is indeed still and always in control.
At the altar, HY and I prayed together and we asked God to give us the grace to submit fully to His will for our lives. And we’ll present our needs to God only after we’ve submitted to Him. We asked God to help us to wait expectantly (and be inspired by those who have gone before us in history and in the scriptures). Everyone has a different journey of faith – so we must learn to not give up or give in so easily but instead persevere by taking up the challenge to rise to occasion that faith demands us to. Today, HY and I asked God to help us to live a proper Christian life and to be joyous in our every in and out.
I like what RW stood for – that if you truly aspire to shine for Jesus, you must “find trouble” – and solve it by the grace of God. For when that happens, people stand up and take notice of what God is doing through you. God, who enables the problem to be solved and the trouble to be shot, will take the full glory alone. I believe that you can’t go wrong if you keep doing something right.
I don’t really write about events because I’ve set out this blog to capture more thoughts and reflections than moments, but I think I should remember my thoughts and feelings about this particular piece of memory in my operation recovery.
Many of you would know that on Tuesday I underwent surgery to deal with Dercum’s Disease; the team of surgeons removed all 25 lumps (L arm-2, R arm-5, L leg-2, R leg-2, F torso-9, B torso-5) which I had identified on my body. There are many things which I am thankful for throughout the entire process:
- The excellent SGH team – be it nurses, assistants, anesthetists or administrators. There’s a lot that could be learnt from their care-giving; I left that evening with better idea of what it meant to show hospitality, from none other than a hospital team.
- Normal bodily motion and function – with 25 dressings all over my body, my movement is restricted, uncomfortable and painful. I believe I would never take normality for granted again; the temporal inability of doing things normally heighten my appreciation.
- Sudden and unexpected team of prayer warriors – be it from my DoYouLoveMe? cell, Shanghai MannaM@X cell, REAL2010, colleagues, family members and random friends. I must have had at least 25 people praying with and for me. God does His math properly – one for every lipoma.
- Non-reaction to General Anesthetic – I’ve had neither allergic nor nauseating reactions to GA. Seems like everyone whom I’ve spoken to (who has undergone GA) either puked or felt really giddy. My doctor said I may also get sore throats and coughs. But praise God – I’ve had zero reactions. (By the way, I managed to stay awake for all of four seconds.)
- Mummy’s unfailing storge (natural love and affection from parents) – 10th March marks her birthday and yet she spent the entire day making sure I was all right. The closest agape an unmarried man would experience would undoubtedly be from his mother. I could never be more thankful for the last 27 years of care-giving, self-sacrificing and out-loving from this remarkable woman.
I’m also especially thankful for HY. Three years ago, immediately after I left the SAF, I went for a minor operation to remove three lipomas on both arms. HY was there with me; back then, I was still courting her. Three years on, HY was also there with me, this time as my girlfriend and what a difference three years have made:
- The comfort and assurance I felt when I was pushed back to my ward to recover, and to find a familiar face of love who had been waiting there for the last two hours. That is something I should never take for granted because she doesn’t owe it to me; she didn’t need to do it, she wanted to.
- HY had a fear and natural dislike for hospitals and yet she overcame that to care for me. Of course there were boo-boo moments (for us to know, for others never to find out), but it made it all the more memorable.
- She demonstrated patience for my impatience and a cool head for my hot head. This last statement actually does sum up how HY makes me a holier person by allowing me to overcome my weaknesses by learning from her strengths.
- HY came to my place today to also celebrate Mummy’s birthday. She bought and brought along with her my recovery pack – two boxes of Post cereal and Magnolia milk for my breakfasts over the next week, Bee Cheng Hiang pork floss for my congee lunches and (my two favourite snacks of) Famous Amos cookies and Jollybean peanut pancakes in case I go hungry at night. It doesn’t get more thoughtful than that! HY never fails to demonstrate to me that love is indeed a verb.
- Her presence during my absence from work this week have made and will continue to make a world of difference. She was there on Tuesday, Wednesday and she has offered to accompany me for Thursday. Every Naruto needs a Sakura in their lives for speedy healing, uh? (:
All right, I’ll be missing in action until next Monday (when I visit my doctor for the follow-up medical appointment). I doubt I’ll be mobile enough to make it to church services this weekend. I’m gonna try to work on the Newbies sermon series during this period of absence but I highly doubt my productivity. There’s little packing that I can do at home due to the awkwardness in moving around too. So… I think I’ll just be reading, playing FM (hehe), watching free movies on MioTV and couch-potato-ing a lot during the next few days. I welcome company.
There’s so much to praise God and to give Him glory for. He is good, in control and will bring it to pass. I serve a God who heals and a God who provides. And so I continue to covet your prayers. Please pray that:
- The root of the disease has been removed;
- There won’t be a recurrence – new lumps won’t grow, old lumps won’t return;
- Insurance will cover the bulk of the surgery cost – it wasn’t a cheap operation by any measure, and as it stands, I’m footing the entire bill;
- My body will heal well;
- Scars will be minimal;
- Wounds won’t be painful when I move around, sit or sleep, and
- There will be no infections or complications
And now I shall head off to watch Man Utd beat the living daylights out of AC Milan. (It’s 1-0 now but I may come back to edit this last sentence depending on the final score 90 minutes later…) [Edit: I’m a prophet. The final score: Man Utd 4 AC Milan 0.]
Extracted from Wikipedia:
Adiposis dolorosa, also known as Dercum’s disease (and which is different from Ander’s disease in which painful or painless fatty growths that do not resolve with weight loss), is a rare disease characterized by multiple painful lipomas that arise in adult life… …It also occurs in men and women of all ages. The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands. It was first formally described by Francis Xavier Dercum in 1888.
A disease accompanied by painful localized fatty swellings and by various nerve lesions… …Dercum’s disease is a rare disorder in which there are fatty deposits which apply pressure to the nerves, resulting in weakness and pain. Various areas of the body may swell for no apparent reason. The swelling may disappear without treatment, leaving hardened tissue or pendulous skin folds.
Read more here.
That’s the most current (and I think most accurate) diagnosis of my condition. I’ve already scheduled a surgery on 9th March to remove all the lumps (approximately 20+) on my body; it will be the first time that I’d be under general anesthetic. I could have gone for the operation before Chinese New Year but I didn’t want to fly to Sri Lanka risking infection with open wounds. If you are reading this blog, please pray that:
- Every lump to be identified and completely removed.
- No recurrence or regrowth.
- Root of the problem be eradicated.
- Insurance to cover 100% of medical and hospitalisation expenses (about S$3,000).
- No side or post-surgery effects.
- Surgeon to have skillful hands so that I won’t be left with unsightly scars.
- Peace of mind and trust in my Jehovah Rapha.
While you’re at it, do pray for the REAL team too. We are heading to Tanjung Pinang in Pulau Bintan (Indonesia) from 23-25 January. Our ministry includes preaching, sharing testimonies, conducting children’s church and youth programmes, giving English tuition, visiting homes as well as presenting a special item. RL and I will be leading a team of nine boys and six girls. Prayer pointers include:
- God’s anointing to accomplish His work for His glory alone.
- Good health and quick recovery for those who become unwell.
- Journey mercies in sea and road travels.
- Wisdom to do what’s right and appropriate.
- Sensitivity to the Holy Spirit.
- Flexibility when programmes change.
- Favour of the locals.
Thank you for praying. Have a good weekend.