Trying To Hold On

It was the year 2003 when as I know now lupus symptoms reoccurred. I started to feel sick like I had the flu, but it really was not the flu. I stayed cold all the time, sluggish, joints hurting, people that I know was asking me was I alright and that I looked tired and ran down. I would brush it off and replied I'm okay just a little tired that's all. But this kind of tired was different. I remember making several stops to the ER trying to find out what was going on and as usual they found nothing.


You may say she has been in the medical field for 30+ years and she didn't know what was going on with her body? No I didn't know, all I knew at the time that I was not feeling well, and that I had to continue on, and so I did. You see my mother was ill and we were taking care of her at home, so I made the concousios choice to put myself on the back burner and put my mother first, the women who took care of me all my life, so now the role had reversed and it was my turn to take care of her.


In the fall of 2003, I was getting ready for work and while I was putting on my makeup I noticed on the left side of my face a small protrusion, I felt it, not hard it didn't hurt, so I figured that I must have been bitten by something in that area. Weeks went on and it became bigger and started to hurt, so I went to the doctor and he stated that I needed some test performed. When the results came back he stated that it was an infected submandibular gland that needed to be removed, so he refered me to a surgeon.


At this time I did not say anything to my family, I went ahead with the surgery for the removal of the gland, but during surgery, while they were bringing me out of the anethisea,

I heard the surgeon say, "she is bleeding internally put her back under". When I woke up I had been admitted into the hospital. I ask the nurse why am I here? What happened?, Why is my throat sore? What the hell is going on? She stated Susan they (the doctors ) did not tell you what happened? I stated no, what's going on?


By this time the doctors entered the room, they were feeling my legs, I stated to them what happened? The surgeon replied and stated Susan there were some complications, you started bleeding internally and we had to go back in your main artery was nipped and we had to place 4 titanium clamps on your main artery, my response was did you have a student physician operating on me? he stated no, I didn't belief a word that he stated at all.


So my next question was, "why is my throat sore? he (the surgeon ) stated you aspirated on the table 3 times. Then I asked why do I need to have blood? he stated because you loss a quite a bit of blood Susan. My girlfriend who was with me at the time was a retired nurse, after they (the doctors) left out of the room, my girlfriend stated that she knew something went wrong because, she kept asking what was going on she should have been in the recovery room by now. I told her not to say anything to my family ( based on the fact that my mother was ill ), she agreed, she asked me what are you going to do? my reply was I going to handle what I have to handle, and keep trying to hold on.


After I was released, I told my girlfriend that I needed to go see my mother, and she drove me to my parents home. My sister opened the door she looked and stated "what's wrong with you"? I stated I'm okay it's nothing. I walked up the stairs and into my mother room, rubbed her arm and gave her a kiss and told her that I would see her tomorrrow

and I left out. At this point everyone could see the weight loss, I mean I was dropping weight rapidly, but I was trying to hold on. Now the spring of 2004 came and I was still not feeling well, so I made an appointment to see my PCP ( primary care physician ) as usual he ran test and told me to come back in two weeks.


But, two weeks did not come, I received a phone call at work, it was my PCP, he stated Susan I need for you to come into the office your results are back. I told him you could tell me over the phone, he stated no I need for you to come in, I replied ok. So I left work early went to his office, he came in along with his partner, he stated "Susan I don't know how to tell you this" I stated just come on out with it, they both looked at each other. So I stated what your trying to tell me is that I have Lupus, my doctor stated "why do you say that"? I informed him that I did my research and I have all of the clinical signs, so what is our next move and the plan of care that we will approach? My doctor stated "do you need someone to talk to " I replied no, it is what it is, I'm good, I know there is no cure and that the only thing that can be done is to control my symptoms.


So, this is where my story began again, trying to hold on, while hiding the fact that I was fighting with my own body.





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