Sometimes I wonder...why me? I already know the answer...I know that I won't ever get one...but as a is supposed to be a part of God's big plan. I desperately want the sleep [death] that is described in the bible. I am not suicidal, but I'm tired. I'm tired of being in this body, being constricted to what my body will allow me to do. Why? When I talk about it with family & friends...they feel sad for me and that's not what I wanted. I do not know how to describe the feeling, but what I really want is rest.
The reason I started this that I could vent out feelings of frustration without people judging me.
No one knows how I feel unless they have walked a mile in my shoes. Being a wife, mother & friend...has definitely taken it's toll on me. But that is something I truly enjoy. Now being a daughter, well on the other hand, I would opt out. My mother, well she isn't your normal mother. She left [abadoned] me when I was two years old to pursue medical school. Till this day, I ask her why she didn't take me? I didn't get to live with my mother until I was seven years old. And even then, I was transferred to one family member after another. She worked terrible hours, which meant that I never saw her. I can't say that I didn't have other things...monetary things...that I was never short of. Which she accounts for working so much. But I think I would have rather given up all of those things for time. I've seen many psychiatrists, therapists, etc. & I have been told the same thing over and over again. Until I resolve that part of my life, the animosity that I feel towards my mother will never be resolved. She never says sorry. The way she says sorry, is buying me things or taking me on extravagant trips. Some believe that's enough to heal a wound, but my wounds are deep. I have been told the only stable thing in my life is my husband. Because he has stayed with me through it all, good & bad. Not saying my husband is a saint either, but he has had his moments. But as much as he has to deal with...I'd say he'd qualify. Let's not tell him though. Maybe one day.
Like this european trip that I am going on [well hopefully] next week. My mother has decided to take me with her...and I can never go anywhere with out my daughter, so I pulled her out of school to come with. We make all the arrangements, airlines, hotels, etc. Then my mother pulls this "woest me" thing...saying she didn't think she was going to spend this much money. I want to tell her, then why take us on this trip? She is the one that suggested it? But my daughter has advised me otherwise. She said that I would just make grandma angry. But I have made it clear that I don't need the added stress - because of monetary issues. I finally broke down and asked for the wheelchair assistance. As many people know, Lupus is an invisible disease. If people look @ me, you would never be able to tell that I suffer. I look like an ordinary 30 year old person, who should be living an active lifestyle. But unfortunately, I'm not. I look 30 years old, but I have a body of an 80 year old woman, literally. I have felt on more than one occasion that I am defective [and if I was a store bought item, I should be returned].


Kathy said...

I have Lupus too and my Mother was a Nurse in labor & delivery. If I ever asked her questions about my blood work and what not, she'd reply "I don'tknow if it has nothing to do with babies being born, you need to ask your Dr".
(So much for support there) She has since past on, but she would travel across the world on her vacation, never once asking me to go. But she's take my other sisters or brother places around here in California.

I've had Grand Mal seizures sine I wa s 16 and she was probably embarassed I'd have a seizure in public, thus embarassing her or slowing her trip down and that's why I was never invited.

I'm glad your Mom wants to make up to you,but your own daughter should be included regardless.

I'm happy to hear you asked for a wheelchair because you will need it. I wish you luck and hope you get to enjoy your time in Europe.

I looked at your list of meds, seems like youhave some good Drs. taking care of you & your needs.
Hang in there, your'e never alone with this horrible diease.
Kathy in California.

Living With Lupus said...

Kathy - thank you for the reassuring words...Thank you for reminding me that I am not alone.

I am a little worried about the doctors that I see...hopefully they will figure out a plan that doesn't mean changing my meds every time I come in for an appt.