Pain pain go away and come back….uhhhhhh….never!

I’m sitting here at 11:43pm waiting on my pain meds to kick in and watching John Wick, if you haven’t seen it and are a fan of action and a lot of guns plus Keanu Reeves look it up. I’ve always wondered why my meds kick in immediately sometimes and sometimes they just don’t. I guess my body maybe at a different balance or level of something that causes the meds to not absorb as quickly every single time. I wish I knew what it was so I could have everything in a line when it’s time to take them. I am having a surprise bridal shower for a friend on Saturday and I’m kind of excited because I haven’t seen my friends in awhile, one in particular in probably 6 or 7 years. I consider her one of my closest girlfriends but we just don’t see each other or really talk that often but, if I were to call her and need something she would be here for me in a heartbeat. I need advice on something, I may have mentioned in a previous post. Since becoming sick with lupus I have alienated myself from all of my friends. When I am sick or in the hospital none of them knows and therefore can’t visit. Now that I’m spending more time in the hospital and undergoing treatments I would like visitors. Should I ask them to visit me or call them when I’m in the hospital to let them know and then let them decide whether or not they will visit? I’m lost because I don’t want to come off as needy or begging but, I miss them and seeing them when I’m sick will lift my spirits. I’ve gone without them for so long and granted this is my doing and I want to reverse this. My mom told me if I make myself more present and frequent in their lives they will notice if they haven’t heard from me and therefore know something must be wrong. This makes sense. I also am going to tell them that I would like to start getting together at least once a month if their schedules allow. I’m really not a phone talker but to text frequently wouldn’t be an issue either. My health is so unpredictable and I never know from minute to minute how I’m going to feel, I cancel a lot and this is the most frustrating part of lupus. I have so many plans in my head and at times I can’t execute them. I will be constantly apologizing to them I am sure but,,I will do my best to push myself if plans have been made. I told myself even if I am flaring with a fever on Saturday, I am not cancelling this get together, I will just get medicated up wrapped in my favorite robe and be amongst the party. It actually seems that when I’m with someone talking and focusing on something else I deal with the flare a lot better. I guess this makes sense because your mind is on something else and not the pain. When alone all you think about is the pain you are in. Case in point, right now, alone and all I can think about is this pain. The typing is helping slightly but, not really. I wish I could call my mom but it’s to late and she has an early appointment before we go out to get everything for my party tomorrow. She came over here today and completely cleaned my bathroom for me. She has dusted my furniture and cleaned my carpet and vacuumed. She’s also going to help me clean off my counters in my kitchen. I would think my sister would help me but, she’s busy with school and just life in general.  I wanted to clean out my fridge because it is so unorganized, just in case my guests go in to get something but, I’ve decided to have an ice chest out with the drinks in it so there will be no need to go in the fridge at all. I am having sushi, cocktail shrimp, meatballs, chicken wings, pasta salad, a vegetable tray and cake with ice cream. Along with soda, water, wine and the brides favorite drink, Jack Daniels and 7UP. It should be fun, it’s a small group just 4 of us and we had a bet many years ago that Frances, the bride, should be married by a certain year and if her boyfriend at the time didn’t propose she should move on. I’m not sure if she signed the agreement or not but, I think she did. Needless to say it was well past the date on the paper that they finally got married. I’m sure the year was more than 10 years ago on the paper. This is hilarious to me and it will be brought up for sure.  My fingers are cramping so I must stop or now. Be blessed.

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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.