Scattered brain fog

It’s times like this that I wish I had a man in my life that was there for me whenever I needed him. I say this because I have been up all night and I wish I had someone to talk me through the pain.  I have my parents but they like everyone else that is normal is asleep at 3:23am.  My sister also is sleeping peacefully as she has to go to work in the morning.  I would hope that if I did have a man in my life he too would be sleeping because of his six figure job he had to report to but, would wake up at the drop of a hat if I called. Insomnia has been a bigger issue for me lately because of my chemo treatments for my kidneys.  It’s something that I know I have to go through and insomnia, on the big scheme of things is a mild side effect that will eventually go away.  Well, it actually may not because it’s also a side effect of several meds that I am on but, hasn’t effected me as frequently as the cytoxan infusions has caused.  On another note, I was playing phone tag with a therapist that my PCP referred me to and I gave up. It’s been about s week so I’m going to try again this week.  I hate to beat a dead horse and because of my brain fog from lupus I can’t remember if I mentioned this in previous posts.  As I type this I haven’t titled it yet because I do believe I am all over the place, which is nothing new. I love to write and I have been told by a journalist that I truly have skills but I have no knowledge of structure in how to properly write, I’m not sure if that is even the proper wording.  I have always thought that writing is my passion but, in dealing with lupus it is a chore more than something I enjoy and look forward to.  I was writing a book loosely based on my life years ago and it was really good.  I had portions written and portions on disk, yes, a floppy disk. That shows how long ago it was.  I have no idea where it is, but I truly believe if I thought long enough I could get it back and make it even better now that I have been through so much more in my life.  I recently started a second book that is completely fiction, I had it all over, in notebooks my phone and computer, well something happened with my phone and I lost a huge portion of the story. It was so new in my head that it’s not possible for me to remember what I’ve lost.  If I wanted to continue this story I would have to basically start over.  Even if I were to complete a book, I have no idea what to do with it. Would I have to put out money in order to possibly make money? I have no idea.  I recently read a book written by Jen Arnold and Bill Klein of The Little Couple, a TV show on TLC.  Because of her career as a doctor and his background as a business man I expected a lot more.  I could have written this book. The story, which was of their lives individually as kids growing up was fascinating but the way it was told was very underwhelming and disappointing.  I assume because of their popularity it is a best seller. I was also surprised to find out that it was co written by a well knowN publishing company. I think if people would want to read about their lives why not mine, but I don’t have a reality show.  I am an unknown person to the public.  I would have to have some sort of marketing strategy to become relevant.  I am currently only getting disability and it’s extremely hard to live off of, my sister and her husband live with me at the moment and pay me rent and that is what is sustaining me.  Once they move out, it will be extremely tight.  I do have good days but not enough that any company would feel confident in hiring me.  I am not consistent and not reliable.  This is so hard for me to admit but having lupus makes it that way.  On many occasions I have cancelled on family and friends because of an unexpected flare of lupus. Family understands and unfortunately not all friends do and I have lost some because of it.  One friend in particular, who meant a lot to me, in my opinion, criticized me at an extremely low time in my life. I do think in her mind she was encouraging me but her words cut me where I was already wounded and I have never healed from it and she has never contacted me again.  I always thought there was hope for our relationship but earlier this summer my sister and I were both in the hospital and she visited my sister and not me.  I can’t tell you how badly I was hurt, my sister told me that she didn’t visit me because she didn’t know where we stood or what to say. From my perspective a hug would have been a good start and we could have gone from there.  I guess I expect people to do what I would do and there is no way I would not have not visited her had she been in the hospital.  I do miss her but I do feel this friendship is over, we had been friends since we were 13 years old and I am now 41 and she will be October 11. She is honestly the only friendship I’ve lost, not that I had so many friends to begin with but, despite becoming a hermit and losing my social butterfly status, they have kept in contact with me, encouraging me with cards, text messages, emails. They have never given up on me and have chosen to let me take the lead and meet me where I am instead of wanting me to be where they are.  They have stopped inviting me out because I would always cancel and I must admit it wasn’t because I was ill on all occasions.  I became comfortable with staying at home. I even became fearful of going out so I stopped, I feared the way people would look at me and was so insecure about my weight gain and the fullness of my face due to the steroids.  Dinner, movies, parties were all a no go for me, these things became a chore for me to do instead of a pleasure.  This is where I presently am in my life.  I know I have friends that love me and they have tried to sneak through my sister to get me out of the house but, she knew it could have negative effect on me and discouraged them and they understood.   I keep all of their cards and notes that they have written as encouragement but, I’m still in this place of wanting to be in isolation.  My life is relatively sad and it should not be.  I think I have written about the therapist in a previous post, I am so sorry that I repeat myself on many occasions but it’s the brain fog and it’s not just in my writing entries it’s in life as well. I now know what the title will be for this entry.  It’s now 4:28am and I have so many ideas running through my head about a book it’s crazy.  I need to take advantage of this creativity. Thanks and be blessed.

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