PAIN, excruciating pain.

I could write forever on this topic but nothing, no words will ever be able to truly and adequately describe how I feel everytime I hear Charmaine complains of "PAIN".

Pain is no longer an English word to me. It is more than a word. Or should I say it feels more like a ghost haunting you, an invisble knife stabbing a thousand times at your body or fire burning on your skin very slowly.

I've never been stabbed, never got burned and never met a ghost.

But when I hear the word "PAIN" from Charmaine, I can literally and physically feel my gut jumping out of my body, my heart sink into my stomach and I feel a knot in my intestines. I feel nausea immediately and I find myself gasping for air. Than I feel like my entire body is going to give way; every part feels limp.

Is this the feeling of death or fear? I dont know.

In all my 30 years of life, even after Charmaine was diagnosed last year, she was blessed with not experiencing much pain in her body except during those painful 3F8 infusions. The relapse on her right femur brought on a whole terrfiying and painful ordeal. Pain that comes on as suddenly as it goes off. Pain that will render her literally bedridden and immobile.

Yesterday she resorted to just dragging her butt on the floor to give herself a tiny bit of mobility. She found it somewhat amusing but it was sheer devastation for me as her mother to watch her.

Yes, she is suffering from pain on her right knee again. She started complaining of pain on Saturday afternoon. Based on past experience, I immediately restricted her movement totally and told her to lay in bed, complete bed rest. She said OKAY but would still hop around every now and than. Saturday night, I couldnt sleep. Her pain always seem to get so much worse at night because she has such a high threshold of pain that she could tolerate and bear with all of it during the day when she is conscious and awake. Come night time, her subconscious takes over and while her body is tired, trying to sleep, she feels all the pain and would often sob throughout the night. I observed her until past 3am and finally fell asleep when I was certain that the pain med were working and she is able to sleep comfortably.

Sunday night, it was horrible. She couldnt sleep the whole night. She basically just sobbed herself till morning wee hours until she was exhuasted, until I could give her the next dose of pain med. On Monday morning, she seemed to be better again.

Yesterday night, I adjusted the timing of the different pain med to fit her sleep hours and prayed that it would provide relief and comfort so that she can at least get some decent sleep. It worked. I watched till 3am and she was still sleeping good. So I decided I could sleep.

This morning at 8am, she suddenly woke up screaming in pain and crying. My little girl doesnt scream and cry in pain that much because she always tolerates the pain with her own amazing strength. I jumped up in shocked. And than she started mumbling, in between the sobs that she couldnt even move her body an inch. She just laid there in a awkward sideways position, crying non stop. I tried to help her but I barely touched her leg and she started screaming out in more pain. And than suddenly, between more crying, she said "I dont want to be like this forever~~~"

I'm heartbroken and I just want to pause the clock so everything would come to a standstill, a complete nothingness.

Finally, she calm herself down and tried with all her might to turn her body onto the other side. I need to know she can do that and I know she can!!! Inch by inch, she bit her lips down hard and pushed herself over. I was just so relieved.

I checked her knee, it didnt swell up worse.

One of the biggest reason why I didnt bring her in immediately on Saturday is because our doctor, Dr Aung is out of town the entire week. :-( It is unfortunate but I can only say I trust only her. I'm simply not comfortable with anyone else. And pain in her knee is not something I am confident that mother's instincts is always correct. How much or how far should I question the decisions of the other doctors who seemed to always prefer to start on a level I am uncomfortable with. Usually, once you stepped into the ward, its numerous blood tests...

But enough is enough, I'm going to bring her into the Emergency once she wakes up. And I hope with enough prayers and luck, we will meet only guardian angels who truly know what they are doing. Or, with enough prayer, maybe God will hear my cries and miraculously ease Charmaine's pain totally.

Please please please keep those prayers coming in. Please pray that this is not any infection and please pray that its another case of Charmaine over-exerting her already weak knee. Please pray that she will sleep soundly tonight with no pain.

Thank you so much.

PS: We have no results yet. Will update once I get something.

Love,
Cyn mommy