Life, Love and the pursuit of normalcy etc.

An Internist I had in the Hospital in July recommended that I let go of (ok, so technically fire but “let go of” sounded less bitchy) two of my Dr.’s and try out two that he felt were better fits. Apparently he knew what I had sensed; these two particular Dr.’s I currently had weren’t the best that were available to me. I took his advice and he was definitely right! One of the Dr.’s is the ALL IMPORTANT Rheumatologist that is responsible for testing and helping me manage and stay on top of the Lupus and related issues. Very seasoned and has many years of experience. My ‘Rheumy’ did more extensive blood work hoping that I was pulling false ANA/Lupus positives, which made me very hopeful too, but then I got the letter on the day of the follow up with my Rheumy… “Dear Ms. X, after extensive testing, it has been determined that you DO indeed have Systemic Lupus Erythematosus, blah blah blah blah blah because that’s all I read after the first line. Although the final diagnosis wasn’t a shock, it was still like getting punched in the stomach by seeing it in writing. I was actually beginning to believe that maybe it was some big fat mistake. Darn!


I have been feeling much better week by week with only minor setbacks. Actually, at times I have felt great but am definitely not disillusioned about my condition. I am finally at the point where I can enter a grocery store and not feel nauseous! YAY! I actually got some of my appetite back and cooked some meals this week. YAY! So you’re thinking big deal right? HECK YES, big deal for me. The thought of food and grocery stores have made me want to hurl for 6 months. I am excited about this return to food normalcy and being able to eat without constantly feeling nauseous. I am also able to pick my 7 year old at her after school program at the Y. The camp counselors are in shock at the sudden appearance of her Mom (me) as Chuck has been dealing with that end of things since April. I had texted my friend Jen one day last April that I would give ANYTHING to be well enough to take my youngest to the playground. I smiled (for you too Jen) while leisurely sitting and watching her play with her friends on the playground on Friday October 22, 2010.


I have returned to working out again daily at home with slipping in some Y time on the Elliptical here and there. Every day, with this autoimmune disorder, I have to pace myself and save on energy to be able to do all I want to get accomplished. I now explain my illness to people by using the spoon theory and it makes a lot of sense to them; http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/  . With little kids you could use candy or chocolate squares but spoons or any utensils work for adults. It’s normal for people to want to BOOST their immune system so it’s hard for me to explain why it’s dangerous for me to do anything that will boost my immune system. One of my online friends describes it the best in layman’s terms:


“Our immune system has 4 different cells that work together to give our body protection. These are called T-cells. These 4 cells have different jobs...1. Helper cells do just that "help" antibodies fight, 2. NK or Killer cells - go straight to whatever needs killed (bacteria) and kills it. 3. Memory cells- these build up our immunity, like with chicken pox and why normally you only get it once because you built up immunity. Then there are 4. Suppressor cells - these tell all the other cells when to stop attacking. We don’t have these cells....so our body doesn’t know when to stop attacking. It’s like an army going into fight and shoot until they see nothing moving and wait until the commander stays to stop...well the commander never shows up so they keep killing. Good or bad doesn’t matter, they just keep shooting. These NK or killer cells are just attacking everything because nothing has told them to quit. If you boost your immune system you are just going to add more people that are shooting to that army and more things that don’t need to be killed will be killed” ~ thehoff


Today, I prayed for Suppressor Cells in Church. I will pray for them again tomorrow. I will pray for them every single day. You pray for them for me too okay? Really. Just a simple “dear Heavenly Father, I pray that you help Julie by giving her Suppressor Cells and healing her. I ask this in the Lord Jesus Christ’s name, Amen”. I even gave you the prayer; all you have to do is say it.


Also, please say a prayer for my 51 year old Stepfather who is on a Neuro ICU unit in my city with a brain bleed. If you read my blog, you know he had a massive heart attack 11/20/09 at age 50 that left him brain injured . My R.N. Mother brings him home from his Nursing Home ‘rehab’ every weekend. He took a bad fall off the porch backwards last night and landed on his head. My Mom thought she lost him as he had a blank stare and started into an Agonal breathing pattern. He is not in a coma and so far there does not seem to be any hard core Neurological damage. God truly wants him alive. Considering he died twice and was brought back to life last Nov. by the EMT’s and now this makes me know beyond a doubt, miracles DO happen every day.


Thanks for reading,


<3 Julie