dramas of my life

As I have said in my previous post I am searching for bloggers who are lupie just like me, I stumbled upon justordinary’s blog. Although she is still waiting for her right diagnosis, which I hope would come sooner.

When I visited her blog I’ve look on her link to see some title which would somehow raise my curiosity and lead me to read his/her blog. Although if I have time I surely love to blog hop.

So, I choose Every Patient’s Advocate. Surely from it title you would know that the blog will speak of the right of each and every person to a right diagnosis. And I was right. But what I did not expect is the story behind the blog. Why did Trisha put up her blog.

Reading Trisha’s story have somehow bring back some not so good memory of my past. Which I have commented on her blog.

Before I was diagnosed with LUPUS, i am experienced a roller coaster of emotions. Not only before but also after. LUPUS is not a well know disease. It is not popular. In fact, at the time I was suffering from it, people would ask me why I was like this, why I was like that and I would answer them because of LUPUS they would just stare at me and I know I would have to explain about it. Actually even now, while waiting with other patients for my rheuma they would ask me, WHAT IS LUPUS? Although the difference now is that they would say ‘ YOU DON’T LOOK SICK AT ALL’.

Little did they know about my experiences before I met my rheuma.

Flashback to 2002. I was healthy. Then I got high fever. Loss of apetite and non stop coughing. Since I am stubborn I did not take any meds. Until my fever did not left me for about a week. My brother and sister and some officemates have told me to see a doctor. At first, I did not like to because for me my fever will go in no time. Since I am incurring a lot of absences, I went to see a doctor for the purpose of having a medical certificate (bad!).

At that time, the doctor gave me antibiotics, want a sample of my phlegm which I have a difficulty of getting and started examining me for gout arthritis. After a week of drinking the meds and not getting well somebody told me to go to another doctor who according to her is a good doctor.

So I went to that doctor. I remember being half conscious and half hallucinating at that time I consulted my 2nd doctor. I was shivering and came in with a thick jacket. I went in for an XRAY and based on the XRAY declared me as having PNEUMONIA. Again, another sets of meds which consist of high dose antibiotics.

I am not sure if those meds contribute to my hallucinations. After a week, my weight drastically went down, i was vomitting what I have eaten, my mobility slow down, i cannot walk properly and sit down properly. So my then boyfriend now husband accompanied to the hospital. Fortunately, rashes appeared on body and my face (the butterfly rash). It took the hospital one week to diagnose my lupus, claiming that i was their first ever lupus patient. I was like a guinea pig at that hospital and I felt really bad especially people stares at you as if you are out of this planet.

At first, I was clueless on what LUPUS is. Those people around me makes it worse, saying our former president died of LUPUS, my friend’s mother died of LUPUS, all of those people who tell tales of LUPUS ends up DEAD. So, what do you expect me to do ?

The doctor that the hospital put in charge of me is a nephrologist, who i think is clueless of LUPUS. When I got out of the hospital all she did was to increase and decrease my intake of prednisone. And she did not advise me of anything for example to drink milk to lessen the effect of pred in my bones. She did not know that I was researching my disease as well. And I have garnered enough knowledge to know that she is not doing what has to be done to help me. And I set my mind to find a RHEUMA because according to the net LUPUS is to be treated by a RHEUMA.

On my search for a rheuma I started to go to different doctors. One of whom have told me that my disease is UNCUREABLE. It was true, LUPUS is uncureable but it can be controlled. I walked out of his hospital after I paid him his consultation fee.

After a long search, I stumbled upon my rheuma who is well versed with LUPUS. Despite of the challenges we have encountered together LUPUS, PULMONARY EMBOLISM, CYST in MY OVARY i would have said I found a treasure with him.

Now, I am in remission. A newly mom to a growing child.

If I had not followed that hunch that i need to find a new doctor maybe I would be like those that they told story about.

I think its really best to look for second option.

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