I remember when I was in kindergarten and my mom went for my progress
reports; you might know it as "conferences". My teacher told my mom I
was a good student but I was a "social butterfly". My teacher went on to say I talked too much during class, blah, blah, blah...I had a lot of friends and I liked to play; all the time. Throughout elementary it was the same thing every time my parents had met up with my teachers, "your daughter is a good student, but she's a social butterfly and talks too much". What was I supposed to do, sit in the corner and become a wall flower? I don't think so. I loved to be social and loved to have friends. I was popular. I couldn't help it. People liked me.
Recess time was awesome! I loved to play with the boys and girls. The girls used to play on the swings and monkey bars. Boy! I could do a mean flip off the monkey bars! But, I could do a mean flip of the finger with the marbles that I also played with the boys too. I loved to play marbles. I collected marbles like it was no body's business. My fingers would ache so bad from playing marbles but I loved it.
My friendliness continued from junior high through high school onward. I always had a ton of friends and loved to socialize. Who didn't? My friends and I were like Elmers Glue. We stuck together through thick and thin. When one of us got into trouble the others were there to help out and vice versus.
After high school graduation some of us were going to college out of state and some of us were staying local. That was an adjustment that we had to get used to. We realized that it would give us a reason to travel a little bit rather than missing the others so bad. We kept our chin up than becoming so upset.
Within a short time frame some of us drifted apart from our group and became distant. The loss of not talking to some of the friends became weird and didn't feel right. The socialization that we were accustomed to just wasn't there anymore.
Now that we were in our mid-20's some of us were getting married, some had already had children and some had already got divorced. Life had changed so much. We had already lost so much. One of us had already lost a parent in such a tragic way that it brought us all together and we were there to support her and we wouldn't have had it any other way and to know only a few years later would we come close to loosing her to a horrible disease that put her into a coma that was so scary. Fortunately for her she did come out of it. I'm so ever grateful that she came out of it.
Had my dear friend not come out of her coma, I don't know what I would have done. I was mourning the loss of my friend before she was gone. I couldn't think of life without my dearest friend. We had been together since we were 13 and had been through everything together. We had been through marriage, children, divorce, everything you can imagine together. She was and is my everything. We were separated by 2 states and it hurt that I wasn't by her side. I was in contact with her fiance during this time and he was my lifeline. I was so thankful for him and still am.
In 1999, I was first diagnosed with colitis. This was my first autoimmune diagnosis.
I couldn't believe how painful my abdomen was. My boyfriend (now husband) brought me to the hospital (per my GI) and they gave me some medicine for the pain. I told him to leave me there because there was nothing he could do for me and it's not fun to sit and wait. During the course of the next 10 years I had 5 pre-cancerous polyps removed out of my colon. I recall the last time I had an attack so bad that I couldn't leave the house. My husband was asked to be the Godfather of his brother's baby girl and it was the day she was to be baptized. I couldn't leave the bathroom and I felt horrible i was holding my husband up. I had to stay home while he went to the church. I just prayed the family would understand.
Sometimes when a person has an autoimmune disease, even families of the ill person don't understand the person or the persons condition. It makes it very difficult for the ill person to explain their situation of how ill they actually are when they don't look sick,http://www.butyoudontlooksick.com/.
When you're accustomed to having a social life and your friends stop calling your heart sinks. When you have a good friend and that friend tells you, "let's keep in touch", it makes you wonder if that friend actually means what they're saying or if that friend is just saying that to be polite. So, you do your best to keep in touch and each time you talk to that friend you bring up a place/time to meet up but then never hear from that friend. Then you realize that friend was just being polite all along. You're now mourning the loss of what was once your social life.
Now, you're wondering if you did something wrong to make these people disappear out of your life. Did you talk too much about your illness? Did you do something wrong? These people don't actually think Lupus is contagious; do they?
You receive birthday cards in the mail from your girlfriends and they sign the card with "I miss you". Then you think, "well, if they miss me, then why don't they call me"? You're still mourning the loss of your friends.
You receive a phone call and the person on the other end of the phone asks how you are, you respond with, "I don't feel well, my lupus has been bad for the past few days". The other person doesn't say anything and all you hear is crickets chirping. You're mourning sympathy from this person.
You're now taking a cancer type drug for your lupus. In the beginning your body is adjusting wonderfully to this new medication. After a while your body is rejecting the medication and you become very ill. You try to explain this to your friends and your friends don't think this is a big deal. These were your friends for a long time and you no longer hear from these friends at your lowest point of your illness. You're mourning a loss at your time of need.
Just because we haven't lost anyone to the other side doesn't mean don't mourn. We mourn all the time. We need people to understand what we're going through and we need them to stand by us. We have an autoimmune disease, not the plague.
~ Knowledge is Power ~
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