Well hello those of you in the blog universe, today's blog is about, well not too much. Lol.
Today was one of those days, you know, the one's where you wake up more tired then when you finally got to sleep. These days I find it harder and harder to fall asleep. Last night was a good night, putting me in bed at 11pm but not settling into a restless sleep until about 2am.
Cue gasp and eye roll right about...here! That's about right.
Now some wonder, what does one do for 3 hours, I'll tell you. The first task is trying to lie just so, so that my hips aren't hurting. That is easier said than done, first if i lay on either side, its a no go because well if i lie with my hips parallel to the bed, there is this pulsing pain so I take out me trusty body pillow, but sometimes that doesn't work, like last night. Honestly I think what it came down to was my mind finally shutting down and me passing out in exhaustion. Not a walk in the part kiddies, let me tell you.
Any who, I have been talking to my family (meaning my mother and sister) and I find that I lost at least 3 years worth of memories. Now I don't think that is normal, but i could be wrong. I mean if people tell me stories then i can vaguely recall little things but on the larger scale, its like I wasn't there or its kind of hazy. Like just the other day we were talking and i made some comment about my sister not being home that much during her pregnancy.
Everyone kind of looked at me, and then started to shake their heads. Clearly she was there, she would work (big ups IHOP), come home and then worry about me. Now my nephew was born in 2005, I graduated in 2004, and I don't remember seeing much of anyone really during that time. I get glimpses of peep rallies and high school crushes but nothing too concrete.
I should be extremely worried but everyone tells me I mostly slept, so I guess its all gravy. I just thought that was really odd, loosing time like that.
Any who, I'm off to bother my siblings and I might even think about feeding them. Oh the woes of playing Mom to 12 year old twins when my mother is out of town.
Later people...
Tuesday, March 9, 2010
Monday, March 8, 2010
Why Blog? What's the point?
I asked myself this question many times over the last few weeks. Why blog about something that i rarely talk about in my day to day life.
And there is my answer right there. I DON'T talk about being diagnosed with Lupus and that is why I feel the need to share with people what life has been throwing at me for almost 8 years now. Let me state right now that I AM NOT NOW, WILL I EVER BE A DOCTOR. I am simple a lowly semi-cynic that lives with Lupus and felt the need to share my story.
Okay wait let me back up a bit here. I have been living with this disease since 2002 and I was in 10Th grade, so that would but me at age 15. At the time I felt like I was on top of the world. I was an honor student, was the captain of my step team and was making plans to go away to college and starting a life where the world was my oyster and all that jazz.
Well I guess if I really wanted to still do all that, I could, I would just have to take a different route then I originally planned, but that is neither here nor there. The point of this blog to have a place where people around the world to just come and feel like they can vent and have kind of a sounding board and not be afraid to be judged or ridiculed or be told that they are being dramatic. Trust me, I have dramatic pegged so feel free to go all shouty capitals and foul language on here. There are no rules, well of course besides 'respecting others opinions' and whatnot but hey the 'golden rule' is just common sense right.
So, while I was being poked and prodded, I had the pleasure of seeing the pitying looks on the doctors faces, you know the ones I am talking about. The 'oh poor child, she is so young,' and for the record, I HATE those looks so if you even think of using that look with me I might have to punch you in the face. Of course not literally, I am not a violent person by nature I just play one on TV.
Okay, sorry I went off on a tangent, I tend to do that, if you know me you are aware of my problem. Anywho, like I was saying, I was 15 and stubborn as all get out so it took my sister (bless her heart) to run to my mother and MAKE me go to the doctor. I remember the night as if it happened yesterday, which is amazing to me, I was lying in bed, on the top bunk (gotta love the invention of bunk beds) and I just couldn't get comfortable. At this point i had a rash covering my entire back and arms, and as I was setting up my pallet on the floor my sister rolls over on her bottom bunk and catches a glimpse of the rash mentioned above and demands to know what is up. So of course I beg off and say, "Oh it's from the carpet, it's not a big deal" I know not my proudest moment but I was never good at pulling off a lie.
My sister was always the bossy 'momma bear' type (can you tell she is older) and she replies with a, "That is NOT from the rug, have you told mom?" So i knew I was in deep, I again try to come up with some kind of lie about it being late and I'll tell her tomorrow. Of course Sister McBossyPants bolts from the room and down the hall to bring to light what has been going on. And really, to this day I don't remember what happened after that, I may have fallen asleep, I may have even talked to someone but my memory is hazy as to the specifics of that night. After that I started getting really tired all of the time. Honestly at first i thought it was nothing, I thought it was because I was practicing to hard at my step team practices and had too much pressure put on my shoulders.
For those of you in the blog universe know, the telltale sign of lupus is the butterfly like rash over the bridge of your nose, but at that point I had no such rash, so of course, Lupus was not on the radar and unfortunately until that rash came I was tested for everything they could think of, what all it was, I must have skipped out on those conversations because I just don't know. I was in such denial that I was in Gym class, outside, learning archery in 70 degree weather with a hoodie on. Again, not my finest moment but I wanted to continue to live in my little bubble of perfection a little longer. Sue me!!
Skip to a few months later and I am sitting in the doctor's office, and in comes the doctor to tell me that I have Lupus and I have to go see a specialist. Now I was 15 but when they say words like specialist and Rheumatologists, I freak the freak out you know, but my mom's eyes were stuck on my face like tractor beams and so I have to swallow the panic and nod like my life didn't just get changed beyond all recognition.
Now let me tell you something else about me, I tend to shut down my feelings better than a virgin on prom night. That is one of my many character flaws and it almost always comes to bite me in the behind. Now looking back on it, I think that I blamed myself for getting sick. I thought because I wasn't the best daughter or sister, because I didn't do everything I said I would, that this was my penance or something, and I'm not even Catholic! I didn't grasp the fact that this was one of things that I have to go through, that nothing I did or was going to do in the future could change the outcome of this disease being a part of my life.
One day my mother and I were sitting in the living room watching TV, again there may have been other people in the room but I'm not sure but I burst into tears asking my mother why me? Why did I have to have this disease, why did I have to live with all the medications and all the doctors? I learned that day that holding in everything you ever feel, will leave you to explode at the most inopportune times, so don't do it. Find someone, whether it be your parental units, significant other, or best friend. Talk to somebody because while they may not totally understand, they will listen. Or if you just know someone who has Lupus and feel out of your element as to how to help or what to say, you can see how one person deals with life.
I am not the most sane person, so maybe if you need to hear a semi-cynical account of living with Lupus as well as ramblings that may not always make sense, come one, come all and witness the craziness that is my mind and life.
I guess this is the reason for this blog, a place where, if you feel alone, if you feel like you have no one who understands having all the doctors appointments, or the times when you feel like you can't get out of bed or just want to tell a funny story to, I'm here. I get it, its not the easiest thing to live with, nor is it the hardest, it just is.
It's a part of my life that I have to learn to deal with, and will continue to do so, to the best of my ability.
And there is my answer right there. I DON'T talk about being diagnosed with Lupus and that is why I feel the need to share with people what life has been throwing at me for almost 8 years now. Let me state right now that I AM NOT NOW, WILL I EVER BE A DOCTOR. I am simple a lowly semi-cynic that lives with Lupus and felt the need to share my story.
Okay wait let me back up a bit here. I have been living with this disease since 2002 and I was in 10Th grade, so that would but me at age 15. At the time I felt like I was on top of the world. I was an honor student, was the captain of my step team and was making plans to go away to college and starting a life where the world was my oyster and all that jazz.
Well I guess if I really wanted to still do all that, I could, I would just have to take a different route then I originally planned, but that is neither here nor there. The point of this blog to have a place where people around the world to just come and feel like they can vent and have kind of a sounding board and not be afraid to be judged or ridiculed or be told that they are being dramatic. Trust me, I have dramatic pegged so feel free to go all shouty capitals and foul language on here. There are no rules, well of course besides 'respecting others opinions' and whatnot but hey the 'golden rule' is just common sense right.
So, while I was being poked and prodded, I had the pleasure of seeing the pitying looks on the doctors faces, you know the ones I am talking about. The 'oh poor child, she is so young,' and for the record, I HATE those looks so if you even think of using that look with me I might have to punch you in the face. Of course not literally, I am not a violent person by nature I just play one on TV.
Okay, sorry I went off on a tangent, I tend to do that, if you know me you are aware of my problem. Anywho, like I was saying, I was 15 and stubborn as all get out so it took my sister (bless her heart) to run to my mother and MAKE me go to the doctor. I remember the night as if it happened yesterday, which is amazing to me, I was lying in bed, on the top bunk (gotta love the invention of bunk beds) and I just couldn't get comfortable. At this point i had a rash covering my entire back and arms, and as I was setting up my pallet on the floor my sister rolls over on her bottom bunk and catches a glimpse of the rash mentioned above and demands to know what is up. So of course I beg off and say, "Oh it's from the carpet, it's not a big deal" I know not my proudest moment but I was never good at pulling off a lie.
My sister was always the bossy 'momma bear' type (can you tell she is older) and she replies with a, "That is NOT from the rug, have you told mom?" So i knew I was in deep, I again try to come up with some kind of lie about it being late and I'll tell her tomorrow. Of course Sister McBossyPants bolts from the room and down the hall to bring to light what has been going on. And really, to this day I don't remember what happened after that, I may have fallen asleep, I may have even talked to someone but my memory is hazy as to the specifics of that night. After that I started getting really tired all of the time. Honestly at first i thought it was nothing, I thought it was because I was practicing to hard at my step team practices and had too much pressure put on my shoulders.
For those of you in the blog universe know, the telltale sign of lupus is the butterfly like rash over the bridge of your nose, but at that point I had no such rash, so of course, Lupus was not on the radar and unfortunately until that rash came I was tested for everything they could think of, what all it was, I must have skipped out on those conversations because I just don't know. I was in such denial that I was in Gym class, outside, learning archery in 70 degree weather with a hoodie on. Again, not my finest moment but I wanted to continue to live in my little bubble of perfection a little longer. Sue me!!
Skip to a few months later and I am sitting in the doctor's office, and in comes the doctor to tell me that I have Lupus and I have to go see a specialist. Now I was 15 but when they say words like specialist and Rheumatologists, I freak the freak out you know, but my mom's eyes were stuck on my face like tractor beams and so I have to swallow the panic and nod like my life didn't just get changed beyond all recognition.
Now let me tell you something else about me, I tend to shut down my feelings better than a virgin on prom night. That is one of my many character flaws and it almost always comes to bite me in the behind. Now looking back on it, I think that I blamed myself for getting sick. I thought because I wasn't the best daughter or sister, because I didn't do everything I said I would, that this was my penance or something, and I'm not even Catholic! I didn't grasp the fact that this was one of things that I have to go through, that nothing I did or was going to do in the future could change the outcome of this disease being a part of my life.
One day my mother and I were sitting in the living room watching TV, again there may have been other people in the room but I'm not sure but I burst into tears asking my mother why me? Why did I have to have this disease, why did I have to live with all the medications and all the doctors? I learned that day that holding in everything you ever feel, will leave you to explode at the most inopportune times, so don't do it. Find someone, whether it be your parental units, significant other, or best friend. Talk to somebody because while they may not totally understand, they will listen. Or if you just know someone who has Lupus and feel out of your element as to how to help or what to say, you can see how one person deals with life.
I am not the most sane person, so maybe if you need to hear a semi-cynical account of living with Lupus as well as ramblings that may not always make sense, come one, come all and witness the craziness that is my mind and life.
I guess this is the reason for this blog, a place where, if you feel alone, if you feel like you have no one who understands having all the doctors appointments, or the times when you feel like you can't get out of bed or just want to tell a funny story to, I'm here. I get it, its not the easiest thing to live with, nor is it the hardest, it just is.
It's a part of my life that I have to learn to deal with, and will continue to do so, to the best of my ability.
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