anger – The Lupie Chick Project

Wow, where did the time go? It has been 6 months since my lupus diagnosis. I had a doctor appointment Tuesday, and I was informed that I’m stable- not getting any worse, but thus far not any better. No reduction of the meds (bummer), next appointment Jan 4, 2012.

As I reflect on the past 6 months-it brings tears to my eyes. I’ve have several short stays in the hospital, many days/nights of pain, and depression. There were days when all I could do was cry.. ball up in my bed and cry. I see my doctor so often that I feel like we are dating. I know I’m a handful and I know I work his nerves. I’m always full of questions and comments. I just tell him straight- I can’t afford to do all of the things you want me to do! I know it sounds crazy that someone/anyone would say that they can’t afford to do something that may benefit them-BUT I can’t! I’ve made adjustment to my benefits at work (starting with getting the flexible spending account) in which I hope will help me financially with some of the things I need to incorporate. In the mean time, I’m doing the best I can with what I have. It has been extremely difficult for me to accept help. I’ve always been the care giver- not the one being cared for. I find myself ashamed of my appearance (because of the weight gain from the meds along with the scarring on my face). Ive had trouble with housekeeping and cooking meals sometimes-but THANKS to my children and my husband all of which have pitched in and got the job done when I couldn’t.

Some friends have hung in there with me and a lot have fallen by the wayside. That saying “out of sight out of mind “pops into my head. As long as I’m out of sight, I guess I don’t cross their mind(s). The other day my son’s step mother sent me a message on Facebook that said “you’re a fighter- I know firsthand” lol..lol.. That sentence made me laugh uncontrollably. The people that I least expect to hear from are the people that I’m in contact with. The people whom I thought didn’t care about me, have showed the most concern. For that I’m forever grateful.

November 20th my daughter turned 13 years old. Crazy me thought it would be a great idea to have a 3 day (weekend) celebration.

Pretty Girls Rock Party started Friday at 3:30pm and ended Sunday at 6:00pm. All I can say is a weekend of cupcakes, makeup, swimming, food, and dancing left me slaved to my bed for 5 days. I literally could not move. I had a conversation with my body and Lupus. I told them- “look I need for the both of you to cooperate and lean back this weekend. My mini me turns 13 once and I need to be there for her-if either of you act up, or show off there will be hell to pay!!!!!” My feet gave out Sunday afternoon, but all else was perfect!!!!! My daughter was so happy that I was able to participate and hang with the “girls” all weekend.

It’s been 6 months of living with Lupus. I’m determined to make the next 6 months much more enjoyable & pain free. I’m being forced to face one of my fears (water). It’s been demanded (by my doctor) that I begin an exercise regimen. It’s hard to imagine exercising when I’m in constant pain. I’m looking into water aerobics (to help with my joints) and yoga. I have an incredible fear of water (due to a childhood incident when I almost drowned).

I’m hoping that I can get back to wearing my stiletto’s shoes,walking without pain and leave the sneakers for workouts-not part of my daily uniform. I want to wear makeup when I want too-not because I feel like I have too (I’ve recently purchased the clarisonic brush-I’m already seeing results). I will also be doing a makeup over-a do over- a NEW ME!!!!!! So until next time Lupie Chicks-stay healthy and pain free!

** did you notice that my earrings match my jacket? I wrapped them myself using yarn**

I knew something weird was going on with me, but I was having difficulty putting my finger on what exactly it was. I was wigging out over basic things, I would get anxious whenever I received emails, or messages and I was feeling as if I was having conversations with myself, but I wasn’t “involved” in the actual conversation ( I guess similar to an outer body experience). I’ve caught myself day dreaming and feeling as if I’m in a heavy dialogue with someone only to “snap” out of it moments later realizing that there is no one there.

I ran across a thread on one of the yahoo groups I belong too, where someone was asking about a church to visit. I found this to be very interesting because I’d been telling myself that I needed to go to church. Actually I’d wanted to go to church for a while but something (internal) has been preventing me. Small things would happen that has prevented me from attending.

1. Someone posted about a church that has Sat service, I said PERFECT- Im’a go. I get dressed- go outside- my car is GONE- hubby took the car as opposed to the truck, and my purse and keys were in the CAR!!!!!! I call him spazzing out, and he quickly reminds me that Im unable to drive (dr’s orders) so I mine as well go back in the house! **grumbling** I go back in the house, get undressed and lay down

2. 2nd occasion: All set to go (have transportation, keys, etc) – the address is in my phone.. the security code on the front won’t unlock- I draw the pattern, but what I’m drawing isn’t appearing. Phone is frozen, I take the battery out- nothing, I try and try to break in my phone and the only thing I could do was make an emergency call. Get on the internet to try and Google the address- hour glass is spinning- unable to connect ( what?? ), Pull out my work cell phone- DEAD and the charger is at work, get the GPS ( in the car) , unable to locate (???)

WHAT IN THE HEEZY IS GOING ON? What is preventing me from making it to church?

I instantly burst into tears, crying somewhat uncontrollably. I got on Twitter and the 1st thing I saw was a tweet from Rev Run that said P.U.S.H (Pray Until Something Happen). who are you talkin too? Pray?? {I’m starting to have a conversation with myself. }

Self: Pray- haven’t I been praying?
Spirit: P.U.S.H (Pray Until Something Happen).
Self: What else can happen?? I’ve already gotten my world rocked praying didn’t fix it or make it go away…
Spirit: P.U.S.H (Pray Until Something Happen).
Self: You know what- if you can’t say something other than that- THAN HUSH!
Spirit: P.U.S.H (Pray Until Something Happen).

This went on for 10 minutes, my daughter asks “mom who are you talking too?” I’m speechless, because at the time I didn’t realize I was speaking out loud. So I responded “nobody”. I now realize I had been talking to God and he was talking back. I was allowing the devil and his foolishness to invade my spirit and my mind space.

For me my spiritual disconnect involve the following:

Negative Thoughts
No matter how hard I try, negative thoughts about Lupus creep in. I realize that although this disease hasn’t completely taken over my body, but I also realize that it can and at some point-it will.
To Eliminate: Learn to become aware instantly when a negative thought arises. Remind yourself it is not good for you or others, and it is not spiritual. Create the mental habit to switch the negative thought with something else, immediately. The negative thought pattern needs to be broken, so even thinking of a pencil stops the process.

Anger
To be honest, I’m angry that I have this disease. Yes, I’ve heard a thousand times the I was chosen for this, I had no control , blah, blah, blah, – that’s NOT helping my anger AT ALL. Maybe I need therapy; maybe I just need to get it out one good time- but I’m angry!
To Eliminate: become aware of why you are angry and notice that it is not bringing any kind of benefit to you at all. As soon as you become aware that you are angry, the destructive cycle and pattern of anger ends. Remember, if you are angry do not control or suppress it, but express it. Communication when calm helps conflict.

Tension
The other day, someone looked at me and said “relax” . They said they could see the tension. Yes, I’m tense, my body hurt, I find my self sitting in somewhat uncomfortable positions to relieve my self of knee pain or back pain.
To Eliminate: In the moment, take a deep breath. In the long run, learn to stretch your body and meditate a few times a day. This will help you become more relaxed physically, mentally, and spiritually.

Starting today, I’m taking the appropriate measures to re connect spiritually and to make peace. Peace is what everyone wants. It includes being loved, being comfortable in your own skin, having a life filled with purpose and joy. I cannot connect with any of you, until I connect with myself , create balance, well being, and be at total peace.

Disclaimer: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.

Category: anger

6 Months of Living with Lupus

A Spiritual Disconnect