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! :)
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