Wednesday, January 21, 2009

A Little Bit About Me....

I wanted to write a little bit about myself since I seem to have some new readers who do not know me in real life (IRL). I may seem like a normal Christian homeschooling wife and mom, teaching my four kids, growing in love for Christ and others, facilitating online courses and tutoring four students, directing a writers' group and working with our local arts council. It's a busy life that sometimes drives me distracted, but it's a good life.

But most of you have little idea how much effort doing simple daily tasks cost me. Seven years ago this month I was diagnosed with fibromyalgia, and since then I have also received diagnoses of rheumatoid arthritis and chronic fatigue syndrome. Within five months of my first diagnosis, I was having to use a wheelchair on a trip back east for a retreat with online friends. Within eight months I was pretty much wheelchair-bound outside of the house. Simple things like going to church, going to the grocery store, even homeschooling, were hugely challenging for me. Friends from church drove up the mountain once a week to clean our house (a task the kids have taken over now that they're older). Keith started cooking dinner each night which he continues to do as he's a far superior cook than I am, and E does the dishes nearly every night. A friend volunteered to drive up the mountain to homeschool our kids for an entire school year. I was basically either in bed or lying on the sofa all day for over two years.

The doctor who diagnosed me is a specialist in fibromyalgia, but even she was kerflummoxed by my case which didn't respond to any oral meds, including just about every antidepressant under the sun, muscle relaxants, even oral morphine. Most of the time the meds *increased* my pain rather than decreased it. I was in so much pain I simply couldn't function. I couldn't concentrate enough to read, much less write. I felt as though I couldn't even pray.

I started seeing a Christian osteopath, hoping that he had more answers than my HMO (Kaiser) did, as the specialist there gave up on me and recommended my seeing a psychiatrist as "they had more drugs to offer." But drugs weren't working. I was so relieved when my new doctor told me that my pain was NOT in my head; it was purely physical. We started trying different drugs combined natural supplements, and he worked in tandem with my Christian chiropractor who had noticed the symptoms that resulted in my first diagnosis. When they started a rheumatoid arthritis protocol that included fentanyl patches (usually for terminal cancer patients), I finally started getting some relief from the pain. Somehow my body just couldn't absorb oral medications. My osteopath also started me on chelation treatments for heavy metal poisoning, and I started improving. I could now walk with a four-pronged cane on short trips although I still needed the wheelchair for long shopping expeditions, days at the zoo or Disneyland, etc. (Still do.)

A year ago I transitioned fully off the patches (which were mondo-expensive!) to oral methadone which works fairly well for my pain. My three older kids spent one year in school in 2004-2005 (my middle son two years), but we were back homeschooling after that year because it was simply easier on me than running tight schedules at two schools and dealing with homework that was glorified busywork. I've slowly regained strength so that I rarely need the wheelchair -- just for long days on my feet. I can walk short distances, but standing in one place, especially on concrete or a hard surface, is still quite painful. I soak every night in my special therapeutic jacuzzi to help me sleep at night, and I take 80 mg of methadone daily along with some supplements. I'm still in constant pain, but it's quite manageable now. I have occasional bad days after I've done too much, but I can power through them if I need to. Unfortunately, the steroids I started taking 18 months ago have put on an extra 50 pounds that I would far rather NOT have, but I no longer have to take them. They helped greatly and I certainly needed them. So I'm dealing with the weight issue, trying to get back to my normal size.

I am supposed to avoid stress, but that simply doesn't happen, so I try to relax through prayer, meditation, and creatively expressing myself. I am sloooowwwly trying to build up my exercise routine to help lose weight: I can walk to our Post Office and back home on most days (eight minutes), and on good days I can walk to the library and back (15-20 minutes all together, with a long rest before starting home). I also have been slowly increasing my time and distance on my recumbent stationary bike; I started at three minutes and am now up to 10-15, depending on how I'm doing that day. On some days my hands hurt so much I can't straighten them, and they stay curled most of the day. I write with a fountain pen as it requires practically no pressure to write -- I just allow it to glide across the page and don't have to press down. Mornings are the most difficult as I'm usually quite stiff after sleeping and my legs don't want to work. But I make myself get up and start moving around, and within 30-60 minutes I feel better. I'm nauseous most mornings from my meds but that clears up after I eat.

My solace during this difficult time (physically and *definitely* financially) has been my faith, especially the Anglican liturgy. Each Friday morning I attend an Anglican healing service in which we pray for doctors, nurses, and health care workers, for the sick, injured and disabled, and I am prayed for specifically, with a hand upon my head and anointed with oil. The prayer is simple yet profound:

Susanne, I lay my hands upon you in the Name of the Father and of the Son and of the Holy Spirit, beseeching our Lord Jesus Christ to sustain you with His presence, to drive away all sickness of body and spirit, and to give you that victory of life and peace which will enable you to serve Him both now and evermore. Amen.

Susanne, I anoint you with oil in the Name of the Father, and of the Son, and of the Holy Spirit. Amen.

Several people have asked me why I am not fully healed after attending these weekly services for over five years. I just feel God's grace and strength filling me up when Father prays for me and anoints me with a small cross in oil upon my forehead -- grace and strength for another week of living in pain. God uses these quiet Friday mornings of Scripture, prayer, and Holy Communion to encourage me and help me get out of bed each day for the next week. I couldn't do it without Him, I can tell you that. No way.

So now our newer readers know a little more about me. It's not something I like to dwell on here, but I do want to give God the glory in enabling me to accomplish all He allows me to do. My physical condition is obviously a big part of my life, but it's far from all that I am.

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