When one is told that they have a chronic life disease many react that they have lost their lives. The disease ends up controlling their life and people feel a sense of hopelessness and despair. This blog is a reflection of my life with Lupus. I was officially diagnosed with Lupus in October 2007, but started having symptoms September 2005. I was 21 years old when my life with Lupus began and it has since been a difficult but life changing journey.
Let me explain to those who do not know what Lupus is. This explanation is from the Lupus Foundation of America's website. Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates auto-antibodies that attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.
Lupus can range from mild to life-threatening.
I had just started my life being a newly wed and just moved to Ohio. I started going to college studying nursing and working three jobs. I lived with my in-laws where there were seven of us living in a small apartment at that time. Life was not easy. I was trying to find my new way of life with my husband. As most can imagine, moving to a new place, living with a new family and being a young married couple was not easy and it was difficult.
It was about six months later after the move from NJ to Ohio that I started to feel the "symptoms". At that time, I had no idea what was going on. I just had pain in my knees and elbows. I was a waitress at a restaurant called Max and Ermas. It started to become difficult to carry the plates and I started to feel exhausted all the time. I did not take this as a sign to slow down but instead I got another job and continued taking classes. It was around March 2006 where I decided to quit Max and Erma's because my pain in the knees and the elbows became worst. I couldn't extend my elbows and I was having trouble walking up and down the stairs. I started to lose my hair and became more exhausted. At the time, I did not have health insurance so I did not go see a doctor. I started to lose weight, have more pain but this time it was to my other joints such as my fingers, hips and shoulders.
I went to a massage therapist, chiropractor, and even tried acupuncture. Nothing seemed to work. It was around October of 2006 where I couldn't handle the pain and I needed to know what was going on. So I went to a free clinic. Waited several hours to get in, then several more hours to be seen by someone. That is when they took some blood work. A week later they called me and said that my platelet levels were 50,000 (normal platelet count is 150,000-450,000) and they wanted me to come back in to take some more blood work. This time I did not have to wait. They took some more blood. I told them that I would be out of town for the next couple of weeks so I would not be able to follow up with them. It was about a week later, I was in NJ at that time and was planning to go to Israel for a peace assembly conference when I received a call from the clinic. They sounded paranoid and said that my platelet levels were 38,000 and that I should go to the emergency room immediately. They were worried that I would have a brain hemorrhage. I remember listening to them about going to the ER but the whole entire time when I was in the ER, I could not stop thinking about my medical expenses since I did not have insurance, and I also was not a NJ resident anymore. I waited 5 hours to get a room and the doctor saw me for two seconds and told me I should be admitted. They had told me that my platelet levels were 42,000. I thought "it has not gone down, and I can not afford this" so I told them that I was discharging myself. This all happened during a weekend, and by Monday I had to cancel my trip to Israel. I made an appointment to see a Rheumatologist in NJ before I left back to Ohio. They did a simple blood test in the office my platelets were about the same, but he checked my anti-body levels.
That is the first time I ever heard about Lupus. I can remember the exact words he said. "Kayo, I believe you may have a disease called Lupus. Have you ever heard about it?" I replied "No". "Well", he says "it is a chronic anti-inflammatory disease that effects your joints, and organs but it can be manageable. That is why you are probably feeling the way you are. But you will need to take some further test when you go back to Ohio to confirm that this is what you have". I remember I didn't know exactly what to think. I was not aware of what kind of journey this disease was going to take me. I just remember thinking "What am I going to do?"
I had just started my life being a newly wed and just moved to Ohio. I started going to college studying nursing and working three jobs. I lived with my in-laws where there were seven of us living in a small apartment at that time. Life was not easy. I was trying to find my new way of life with my husband. As most can imagine, moving to a new place, living with a new family and being a young married couple was not easy and it was difficult.
It was about six months later after the move from NJ to Ohio that I started to feel the "symptoms". At that time, I had no idea what was going on. I just had pain in my knees and elbows. I was a waitress at a restaurant called Max and Ermas. It started to become difficult to carry the plates and I started to feel exhausted all the time. I did not take this as a sign to slow down but instead I got another job and continued taking classes. It was around March 2006 where I decided to quit Max and Erma's because my pain in the knees and the elbows became worst. I couldn't extend my elbows and I was having trouble walking up and down the stairs. I started to lose my hair and became more exhausted. At the time, I did not have health insurance so I did not go see a doctor. I started to lose weight, have more pain but this time it was to my other joints such as my fingers, hips and shoulders.
I went to a massage therapist, chiropractor, and even tried acupuncture. Nothing seemed to work. It was around October of 2006 where I couldn't handle the pain and I needed to know what was going on. So I went to a free clinic. Waited several hours to get in, then several more hours to be seen by someone. That is when they took some blood work. A week later they called me and said that my platelet levels were 50,000 (normal platelet count is 150,000-450,000) and they wanted me to come back in to take some more blood work. This time I did not have to wait. They took some more blood. I told them that I would be out of town for the next couple of weeks so I would not be able to follow up with them. It was about a week later, I was in NJ at that time and was planning to go to Israel for a peace assembly conference when I received a call from the clinic. They sounded paranoid and said that my platelet levels were 38,000 and that I should go to the emergency room immediately. They were worried that I would have a brain hemorrhage. I remember listening to them about going to the ER but the whole entire time when I was in the ER, I could not stop thinking about my medical expenses since I did not have insurance, and I also was not a NJ resident anymore. I waited 5 hours to get a room and the doctor saw me for two seconds and told me I should be admitted. They had told me that my platelet levels were 42,000. I thought "it has not gone down, and I can not afford this" so I told them that I was discharging myself. This all happened during a weekend, and by Monday I had to cancel my trip to Israel. I made an appointment to see a Rheumatologist in NJ before I left back to Ohio. They did a simple blood test in the office my platelets were about the same, but he checked my anti-body levels.
That is the first time I ever heard about Lupus. I can remember the exact words he said. "Kayo, I believe you may have a disease called Lupus. Have you ever heard about it?" I replied "No". "Well", he says "it is a chronic anti-inflammatory disease that effects your joints, and organs but it can be manageable. That is why you are probably feeling the way you are. But you will need to take some further test when you go back to Ohio to confirm that this is what you have". I remember I didn't know exactly what to think. I was not aware of what kind of journey this disease was going to take me. I just remember thinking "What am I going to do?"
Hey Kayo, I think it is great that you started this blog. Not just for you but for all of us. Everyone went through a lot during your journey and I think this blog will not only remind you how much you've been through, but also give people who just diagnosed with Lupus hope and comfort. Can't wait till read more of your stories. :)
ReplyDeleteYelin <3
Hello Kayo, Your mom shared with us about this blog and I have found it very interesting. I'm sorry we couldn't support you more during your illness...I guess I was recuperating from my surgery at that time, but we prayed for you every day. We are SO GLAD you are feeling so well and are working! Our son, Dohi, was told he had lupus a few years ago, but it only affected his skin, not his internal organs. Your sharing in this blog will be so helpful for those who are told they have lupus. We love your family!
ReplyDeleteThank you Mrs. Ang. Please share this blog info to your son. I have been doing a lot of research and doing things personally that have been really helping me. I will share them in my blog or he can always call me. Lupus will eventually effect him but he can take control now! Thank you for all your prayers, I will never forget!
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