How is it possible to feel stuck and be on your path at the same time? My body lies "frozen" and still on my bed, my arms wrapped around the front of my body, waiting patiently for this to pass. I call them "Law & Order" days, as I watch re-runs on TNT. My body and Sam McCoy arguing all at once, with my jury being out at the moment.
Awoke today with the usual flare day symptoms but then the pressure in my head began to mount. Not a migraine but just flat-out pressure. Felt scared, as my golden lab (Murphy) won't leave my side. I see the worry in those normally happy brown eyes as he keeps sniffing my arms and legs. I know Murphy senses the changes in my body. His big paws and golden fur make me feel connected in my "frozen" state. This is a gift from God to feel Life when your body is at war.

Yesterday I went for my 1st consultation with a naturopath and found myself driving home afterward with a High level of Hope & Enthusiasm. My Mom had been encouraging me to do this and so grateful she did. I do have a lot of faith in my rheumatologist (last time I went for my appointment, I had written down 10 questions which he answered very thoroughly and with great patience.) but addressing the powerlessness one experiences over this autoimmune war going on inside my body is not something we never discussed. I told a friend that it feels as if a violent video game is being played out inside of me and all I can do is rest on my bed, watching from the sidelines. No power in that. No control. No hope? That is the worst for me.

Diet is another important aspect of this path (or ANY Life path) but I had to ask the doc, not the other way around. When I inquired he recommended the Mediterranean Diet and the Naturopath echoed that as a good choice. Though in her treatment of patients with autoimmune diseases, staying away from gluten/wheat products has produced effective results. So for the next month I'll do the food diary thing, avoid gluten products and cut out all dairy as well. This will take time but if 3 months from now I have a % of my energy back, then I will be thankful for changing a pattern of food which may NOT have always been in best interests.

Back to powerlessness: I think that women live with a sense of this most of their lives. Battling the opposite sex for the same rights, choices, jobs, etc. Regarding health care we are so often dismissed as "whiny" or "acting like a woman." So our emotional sensitivities are not really at the forefront. Well anyone's should be, especially in dealing with a life threatening or chronic illness.
I think I've felt "victimized" by this disease and want to explore taking my life back. 

We spoke yesterday at length about the effect of prednisone on Adrenal glands, the level of magnesium in the body due to its effect on our bones. Dietary changes such as eating chicken NOT treated with hormones. (For anyone with a Fresh & Easy market in your town: Hormone free chicken for 0.98 a lb. Half the price of a clucker from Trader Joe's or Whole Foods!)

I feel excited about this lifestyle change! It will be a challenge because the whole process will take time and not occur overnight. Since being diagnosed last Dec. I've been waking up each day with faith that I'd feel "normal" again. Or that a particular vitamin or health supplement would return me back to my-old-self. (Damn! Who was I anyway?) But I'm psyched there there might be a PLAN now...other than the prednisone/plaquenil path. Thank God for Hope!

 

I just wrote an update on my blog here, pushed a button I shouldn't have and navigated away from ALL my efforts. Grrrr....NO STRESS Lupus Path!? lol!

Ok. Here we go again. I have not posted for awhile and thats primarily due to my obsession with Twittering. Geez! The program actually helps me to feel "normal." As if there is a roomful of cool people in my house. Talking, laughing, having fun...
My "Twitter Legs" going on down the Twitter Path...
Ok. Sunday night I had a revelation. It came to me that MY FEAR of Lupus (and now Fibromyalgia has been added to my diagnosis) will probably be more harmful and counter productive than anything swirling around in my system. Man! I get scared sometimes...and pissed too! This girl loves to hike, walk, swim and has not spent her life living in the shadows.
So my new motto is NO FEAR! Praying helps a lot too and I notice when I don't...there is a tendency to get depressed or "stuck."
Anyhow I'm learning to "be prudent."
Let me explain: I use to work in downtown Phoenix and during the morning drive, there would usually be a group of homeless men gathered in a circle out in an abandoned lot. Always a few in wheelchairs during the winter months when the early morning temps are
in the 20's and 30's. I'd say: "Yikes! How can I drive by this? Stop! Bring them coffee, food to eat, a blanket or two!" Then FEAR would set in and I'd think to myself that something bad would happen if I walked over there.
I finally mentioned my emotional morning ritual to a Nun who has been a mentor to me. Sister Theresa said, "Jenny. You have to be prudent. Keep one eye open!" She indicated it would be good to do this but get a group to go with me and/or call a shelter in downtown Phoenix for help. Her point: think before doing, don't give up and do the right thing for yourself and others.
So now I am washing myself of FEAR and adopting the word "prudent" as part of my Lupus Path. No walking outside mid-day when its 100+ (who wants to do that ANYWAY!) but in the early evening...stretch your REAL legs and go for a walk. Just keep one eye open...on yourself.

Lupus marker: I went to the doctor in the late '90's. Outbreak! On our anniversary broke out in a horrible case of hives. The nurse said my chest looked as if I had a continent tattooed on my body. A shot of cortizone and they sent me packin' with some benadryl for back-up. 24 hours later I was "cured." Hives deterred and life sprang back to normal. Now I know my system was under a Lupus attack.

Today was better but I have a tendency to do TOO much when I have some energy. How do I learn to pace myself? Yikes! Me? A former marathon runner who ALWAYS ran with pulled hamstrings and raw tenacity. Stupid is as stupid does=type A+ personality when combined with exercise.
But that was all part of a former path, with the new "distance" being to stay healthy and graduate to an educated playing field. Yeah!
Tonight I watched "60 Minutes" and there was an unbelievable story about the public hospital in Las Vegas closing the oncology dept, pre-natal unit, etc. I know this story is not about Lupus but it could be any of us with a chronic disease. Due to our economic times the head of this hospital had to make some horribly drastic decisions...leaving people without any place to get chemotherapy or the care they need. One woman had a supply company actually take her bed and wheelchair out from under her in the hospital room.
What made me so mad-while inhaling all of this-was thinking about the bonus money some ceo's enjoy. How can SO many people receive little or NO medical care? All age groups affected, folks laid off, no health care or your condition denied/rejected...only to end up spending your days on the phone attempting to find someone who will help for little or no money. Someone who wants to help ease your pain because they actually give a damn. Resulting path: listening to the blues and posting, sharing here...
A link to the story is posted below:
"Recently thousands of letters went out across Las Vegas telling cancer patients that the only public hospital in the state was closing its outpatient clinic for chemotherapy.
It's the next thing in the recession - communities cutting back on services like schools or cops or public hospitals because tax revenues have fallen with the economy."
http://www.cbsnews.com/sections/60minutes/main3415.shtml

My husband means well but keeps insisting I'm fine! He said tonight: "You're not sick!" I thought: "No! I enjoy running a fever all day long."
I went to Twitter and saw a link to this article. Here is a pinch of a description from a woman who is living with Lupus:

"Then, in November 2004, I was hit by a high fever and pain all over my body so intense in my bones and muscles that no one could touch me. I was throwing up and experienced flu-like symptoms. At that time we were doing mission work in Mexico and had been there for four years already. There was not much income for blood tests or doctor visits. I started to go in Mexico but the blood work was
inconclusive - one day my liver function was fine, another time the kidneys would show irregularities, then they would be fine. I had swelling in all my joints and mostly my fingers would swell really bad and get hot and red and other times my ankles and knees.

"In May of 2005, I returned to California with my family to continue seeing a doctor through Medi-Cal. I was here two months and the blood work was inconclusive. I had lost 40 pounds, was in more pain to where I couldn't walk, insomnia at night and sleeping all day, hair loss, extremely dry skin, sores in my mouth and bleeding gums, broken blood vessels in my finger tips, depression, extreme fatigue, anemia, dehydration and migraines to name a few."
Full article at:
http://www.redlandsdailyfacts.com/news/ci_12049027

When I was at Arizona State University, almost 12 years ago, I awoke one morning to find 1/2 of my face drooping. There was no warning, explanation and needless to say...looking in the mirror just freaked me right the hell out!
That part of my path sent me running to the Doctor whereupon he informed him that I had "Bell's Palsy."  (The following definition is from Wikipedia:
"Bell's palsy is a paralysis of cranial nerve VII (the facial nerve) resulting in inability to control facial muscles on the affected side. Several conditions can cause a facial paralysis, e.g., brain tumor, stroke, and Lyme disease. However, if no specific cause can be identified, the condition is known as Bell's Palsy. Named after Scottish anatomist Charles Bell, who first described it, Bell's palsy is the most common acute mononeuropathy (disease involving only one nerve), and is the most common cause of acute facial nerve paralysis.")
It was horrible and I was worried about being permanently disfigured forever. In any event the drooping disappeared within 2 weeks. Vanised as quickly as it came on. I remember all of this so well because my Spanish 102 teacher insisted I give my oral presentation to the class during the episode. (What a witch!) Geez! I could hardly speak at all and then to try and pronounce a paragraph in Spanish was embarrassing to say the least. 
A book I ordered arrived from Amazon today entitled "The First Year: Lupus" by Nancy C. Hanger. There is a page on Bell's Palsy and Lupus. This is all part of my personal CSI into my path: past, present and future. Grissom would be proud!

 When I was about 10 years old I spent the summer out on Fire Island, off the coast of Long Island, with my family. Out of the blue I began to experience horrible pain throughout my body and became feverish as well. I'll never forget the horrible joint pain. I could not even walk and my Dad had to take me to see the Dr while pulling me in a wagon. In any event, they could not figure out what was wrong with me. The only explanation anyone could come up with was: "It must be psychological!" Back then (in the 1960's) most everything had a 
psychological basis and because my parents were divorced, then the pain was seen as a way of "getting attention" or "acting out." Basically I think my parents were just confused with my crying and symptoms. I was a pretty healthy kid and always outside, exploring and/or up a tree somewhere. No one really understood what was happening & how to get to the bottom of it. After a few days I recovered and went back to being the tomboy I happily was. The pain just left and there I was back on my bike, (with a banana seat and high handlebars to boot!) riding all over the Island in search of actor Tony Randall, who we had run into at the grocery store. Ha! Boy! Was I star struck. But even now, at 55 years of age, I recall how fearful that I was that I'd get sick again. NO warning...NO explanation. Now as I look back, I believe it was my first bout with Lupus.