Thursday, November 3, 2011

Untold Story of My Medical History Part 3

If you haven't read "untold story of my medical history" part 1 and part 2, you can read it here and here. If you are not interested, please come back to my sewing/crafty posts. :)

Ok, where was I... That's right, the part that Dr.D's partner, Dr.T became my doctor.

So, like I said his first impression wasn't bad, he was talkative, and friendly.
My condition wasn't improving at all. I had excruciating pain in my leg and my body kept rejecting the blood transfusion I was receiving. Because of the pain (yeah, did I mention that I am allergic to most of the pain meds?) I hardly ate the last three months, and my weight dropped to 89 lbs.

In the beginning of getting to know Dr.T, he told us that he is not familiar with my disorder. He said, he read the name of the syndrome in a text book when he was a medical student once, but never met a patient before... (I was thinking to myself, “oh, no”).

*Side note* At the time, I thought I had a condition called "Kasabach-Merritt Syndrome" which the doctors in Japan diagnosed me with. The doctors told my parents that I will not live past my teenage years. After the diagnosis, my mother tracked down two people in Japan who had the same syndrome as me. I think her intention was to find out if what the doctors told her was true and they were both deceased.

After several visit, Dr.T told us that he is been doing his own research, but at this point he thinks I should have the rest of my right leg amputated. Practically growing up in the hospital, I have met several people who lost their leg from the pelvis and I have seen how hard it is to learn to walk. I thought not having below the knee is bad enough, but to lose the rest of my right leg is whole new different challenge. I have to relearn everything anew. I thought, if that was the only option, I guess I have to do so, but I really didn't want to. Besides, if he is not familiar with the syndrome, how can he know amputation is the best option?

I was also thinking about my sweet husband, who never once complained in the last three months and kept taking care of me. At the time he was going to school part time, working full time and still managed to come home on his lunch break to take care of me. I felt really bad for him, if I lost the rest of my leg, he might have a hard time getting used to my new form.

At that time our chance of having our own child was very slim too. I was really sad and depressed, if I wasn't sleeping, I was crying. I don't think I cried that much ever before, I probably could have collected my tears in several mason jars.

Between my crying in the hospital bed I was remembering something that happened after our engagement.

My mom liked Mr.TRH and respected him, but she was also afraid that one day I will get very ill like I often did growing up and Mr.TRH will get fed up with the stress, chaos, and financial mess. It was indeed very hard for my father; he was often very cold and distant. Before Mr.TRH (well, way before he became Mr.TRH) asked me to marry him, I really tried my best to explain my syndrome to him and how bad it can be, basically I tried to scare him off.

My mother even said to him that "It was hard to raise her as a parent, what makes you think you can handle everything and take care of her? You might get sick of everything and divorce her someday".

He politely but firmly said, "I won't, I will take care of her and love her. Don't worry"

I didn't know where his confidence was coming from but one of his good/bad quality is that he can be strong headed and stubborn. He didn't budge.

I was remembering all that and thought I really didn't want him to feel like he is stuck in this marriage. He doesn't need to prove anything to anyone. I told him that he can divorce me if it is too much for him and I will not have bitter feelings toward him... When I think of it now, I was so ill and needed the care, it's not like I could walk out of the room and say good-by, or that Mr. TRH would throw me in a ditch somewhere, but when I told him the "D" word, I was dead serious. I felt like I was going to ruin his life.

He was sitting by the side of my bed and quietly listening to me. Then when I was done talking he leaned over and started to stroke my hair. He was looking at me with his most tender eyes... then he said,

"I didn't marry you to just have children. I married to you because I love you and for who you are. If we can have a child that's great, but if we can't I am ok with it. Besides we are married for eternity, not until things get hard or death do us apart. I just want you to get better. I am not going to divorce you sweetheart, don't say stuff like that anymore."

In our religion, we believe that a marriage and families can be together forever. I do believe that strongly, but at the time I was in such a dark place in my life and couldn't think that way. Although, Mr. TRH's unconditional love and support pulled me out from that place and I realized how blessed I am to have such a loving person beside me in such a difficult time... I was crying again, but for different reasons.

I desperately wanted to get better for him, myself and for our future. At the time we had no idea what would happen next. Mr.TRH came to see me at least once or twice every day and we had our mini dates watching movies and such. He always had ways to make me laugh with his jokes and stories.

Later on I found out from my mother-in-law that he was actually really devastated at the time. He never showed me that side of him, he was always cheerful and optimistic around me... but he was afraid that he might lose me if things stay the same for much longer (I was still rejecting the blood I was receiving and my hematocrit level was dangerously low. No one knew what to do).

It was hard to watch her son suffer and be in anguish, my mother-in-law really wanted to help us. We didn't know this, but around that time, she started extensively researching to find a specialist who can help me...

To be continued...

This post got really long, so I will tell you more in part 4. I hope you all have great weekend! :)


  1. Your story makes me cry, but how lucky actually you are, to find such love.. I really hope you will be much better one day!

  2. What a blessing to have such a supportive husband :) Thank for writing out your story :)

  3. I really am enjoying reading your story

  4. happy weekend four you.
    Feliz fin de semana para ti también.
    Un buerte abrazo.

  5. Thank you for telling your story, I'm on pins and needles wanting to know more!

  6. I hope you post part 4 soon, I really want to hear the rest! You're very blessed to have such a husband (and mother-in-law!)

  7. I share with you a love for making things...and also have had several chronic medical issues as well (I refer to myself as our "Money Pit"), and can truly appreciate the emotional roller coaster that goes along with a challenges of a long-term condition. Friends and family kindly ask how I am, but most of the time my health status is exactly what I DON'T want to talk about. Even if it would be cathartic to do so.

    Sachiko, over several years I've subscribed to a lot of blogs; I prefer them in my mailbox rather than a feed. I've unsubscribed from many, and know it's time to do so when I skim through my in-box and skip one more than click to read it.

    That's not so with TRH. Your tutorials are inspirational, your ideas are amazing, and your tender spirit touches my heart. If I were to have a blog I'd hope it could be like yours.

    Thank you for sharing your gifts with us as well as your medical story and your faith. May we enjoy your posts for a very long time!

  8. Thank you for sharing your story, I'm sure it is not easy. But you are very seem have have a wonderful man by your side!

  9. I just finished reading all first 3 parts this morning. You've reeled me in and I'm ready for the next part! :)

  10. Your story is really quite lovely. I feel like I am reading a good book. It has all the elements, drama, suspense, saddness, and romance. I cry several times and I am so moved by your strength.

  11. Your story makes me cry as well! Thank you for sharing. You married a great guy--and he married a great girl.

  12. Thanks for sharing all this with us Sachiko, I can't even begin to imagine the suffering and anxious you must have felt. You and your husband are both remarkably courageous to love and support one another through such a difficult time... Can't wait for Part 4!

  13. My prayers and love goes out to you.
    What a blessing to have such a supportive husband.

    Blessings to You and Yours,
    Patricia aka Mamaw

  14. Mr TRH is an example of how I want to be- positive and caring and committed.

  15. Even though I know the story it still makes me tear up. And because I know you as real people too I just love you all the more! Aren't good husbands the greatest blessing ever!?

  16. didn't just do that. You left me hanging at a very beautiful and suspenseful part of the story! Please tell us the rest soon =D

  17. wow.....this story made me cry....this is a true love story, not like those silly movies! I'm so glad to hear that people are good to each other

  18. I hope you don't make us wait too long to hear more.. it is such a great story to read. In addition to being interested in hearing about your medical condition, I feel like I am reading a wonderful romance novel.

  19. I have spent the last two days eagerly reading over all of your tutorials and posts. I am a lifelong crafter/sewer/paper artist/watercolor painter (well, I try anyway!) and I have to say you have really sparked a new creativity in me! Anyway, I went to your homepage and saw your medical story - it is very similar to what my hubbs & I went through (though I didn't lose my legs, I know exactly what you mean about the burning stinging pain, not moving all night, hobbling/stumbling/crawling to the bathroom that is only 10 steps from your bed. I KNOW). Anyway, your Mr. TRH sounds a lot like my DH who got me through the worst. I'm glad things have obviously improved for you since your terrifying beginnings here in America. I am so glad to see there are others who really honestly believe in eternal love and fidelity! God bless you so much!
    with lots of love, CWP <3

  20. I am enjoying your story- not the pain and suffering you have endured, but your hope and determination. Please don't make us wait too long for part four. . .

  21. Thanks for sharing your story!! a very corageous story.. you are blessed!! Hope you don't have any pain right now. Looking forward for the 4th. part :)
    Have a great Sunday

  22. you are such a lucky girl to find the most beautiful gift in the world. He is the your strength and the breath you take everyday.

  23. Thank you for your story...I have been anxiously awaiting your continuation...and will wait for more. I have been a follower for only a few months loving all your crafty ideas. I loved finding out that you believe that Families can be together forever! What a blessing to know that we can have such loving support for eternity.

  24. I hardly ever leave comments on blogs. Ever. But you touched my heart and reminded me to trust God. You remind me of faith, and patience, and charity, and endurance. I need those reminders today, so thank you! Thanks for sharing YOU. Maybe I can learn that as well.

  25. Thank you everyone for your kind comments! I know I am so blessed to have such a nice husband, and that is one of the things I am always grateful for. :)

  26. I'm waiting with bated breath for the next installment.


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