Happy Health and Halloween 2010 =)

The fall air is so sharp with the smell of leaves.  The air is warm and the slight breeze is blowing the fallen hues of red, orange, yellow and brown crispy leaves around my still green grass that is now dew-laden and sparkling in the sunlight.  Birds are sunning and bathing at the backyard fountain, coming and going every few minutes.   I have a hot cup of pumpkin spice coffee in my hands, savoring the extra dash of creamer and strong brew.  A morning like hundreds of others only I truly see the scenery in a different light.  A much more slowed down and appreciative light.  Why is it that I never realized how beautiful the scenery out my own window is? 

I love the sun but appreciate it even more because of my Lupus.  I know spending too much time in it could cause me to go into a dangerous flare but I still walk out into it during the day and raise my face directly at it.  I close my eyes but love that It feels so warm and wonderful.  I would love to be able to enjoy it against my skin for long periods of time but can’t.  I will savor a few minutes here and there and be thankful that my skin will be porcelain and pretty for the rest of my life.  

I am still kind of in a daze over feeling as if I have lost the last seven months of my life, let alone the fact that it is already October 31^st.  It was just getting really warm in April when I became ill and it was at the prime of summer when I was hospitalized.  I spent the month of August getting used to my new Lupus diagnosis and medications that I must now take to manage this disorder, and September and October trying to get back into the swing of life, loving, praising, parenting, jewelry design and just trying to find the new “me”.  I missed the warm days swimming in the pool; daily walks/jogs with my friend and neighbor, driving to meet up with my best friend and her daughter for picnics in the park while our 7 year old daughters play fight tolerate each other.  I didn’t travel, take my youngest to any theme parks or spend any time walking hand-in-hand on a beautiful beach.  I did do one thing…. Survive!

There are so many things and people to be thankful for each day.  Today, I am thankful that I am well enough to walk around with my little Medieval Princess while she collects candy at the Trunk-or-Treat Church party and then Trick-or-Treating with friends.  My 18 year old attended a more grown-up party last night and is driving back to her college today.  I hope to see her on her way through.  I thank God for allowing me to witness another day of my daughter’s smiles.  Happy Halloween 2010!!

thanks for reading today,

Julie

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

Sometimes Anesthesia is FUN!

I had a double procedure with biopsies done on Oct 6th that I had to have done in the hospital under total Anesthesia. Fun times people, fun times. Not because it was that big of a deal but because my Doc was concerned with being able to keep me “under” in the office/day surgery setting, with the anesthesia they are able to use. Apparently, I am used to high levels of pain but am also now used to very high doses of pain medication that would normally knock people out for a day or so. I can take a high dose and stand and talk to someone or read out of a medical journal. I don’t know why this amazes my Dr.’s but it does.

The lady admitting me said you’re way too pretty and way too young to be having a procedure like this done today. I told her she was way too kind and then said “OMG I’m 41, you must have people younger than me that get this done right?” She laughed and said that some are as young as 17 – whew. I had showered, put on make-up, beach curled my hair and smelled good. I even painted my nails and toe nails Hot Pink the night before. I figured if I had to have a procedure, I might as well look good right?

I leave pre-op finally and they are wheeling me down the hall and the nurses are gathered at the door to my room smiling? Geez people, I’m 41 what is all the fuss about? My Dr. is there waiting and looking like he walked off the cover of a GQ Mag as usual... So I know the routine. Lay on your left side and they come up behind you and put the sleepy stuff in your IV. I told my Doctor and Anesthesiologist I would take no responsibility for my actions or potty mouth when I came out of it. They asked what happened the last time I was "under" so I told them. When I went under I was immediately visited by Fairies – yes Fairies– who kept saying “don’t go back, come with us to the waterfall” and was in this dream-like setting with a lush waterfall and beautiful foliage. I was quite happy in that location and a little mad at first when I realized it was just a dream.

When I came out of that Anesthesia that time I looked at my husband, Nurse and Dr. and said verbatim (apology for language here) “OH my effn psychedelic trip!” Everyone blushed including me I think so I put my hand to my mouth and said “I am so effn sorry for my language y’all but those Fairies were weird”. Everyone got a kick out of that. I sounded like a drunken sailor but couldn’t help myself.

My Dr. told me that with this stuff he was having administered, the most common thing reported were people having erotic dreams. I am thinking OH NO, PLEASE LORD NO EROTIC DREAMS OR TALK. 

This time wasn’t as fun. I watched them put the stuff in my IV, I watched the bubble move through the tubing and it got to the IV port on my hand and I waved to my Dr. and said “night night”. I woke up smiling and said “are we gonna do this or what?” When I found out it was done I was thinking what? No Fairies, no waterfalls, no erotic dreams? Geez, no fair I feel so gyped LOL.


Thanks for reading,
Julie