Trying to turn the engine over

Isn’t that what it’s called when your battery is low and you are being careful to not flood it? A too-heavy foot on the gas will be the end of going anywhere for a while. That’s where I am now; trying to get up and move quickly without using ALL my energy for the day. It’s a true balancing act.
Driving to Savannah is a BIG FREAKING DEAL for me, but at least now after 30+ dives, I can do it without “dying”. One of my docs told me yesterday that she had blood work results on me (taken BEFORE HBOT) and the level measuring inflammation was enormous… it will be something to look forward to – a comparison of that measurement before treatment to after.
Its way past time to begin today – I’m working on reversing my strong desire to stay up all night & sleep all day.

turning, turned, turn…

I have no idea what I am doing up this early except that in ten minutes, I turn 59.  I was born at 8:13 AM.  Perhaps that is why I hate mornings.  I was originally disturbed from the comfort of the womb and never got over it.

I am at #30 of a series of Hyperbaric Oxygen treatments.  It is – temporarily I’m told – affecting my sight.  It is especially difficult on the computer with the lighting but I am committed to begin “blogging in earnest” today.  I was always the writer. I still write but mostly in brilliant posts on Facebook explaining my political views.  What passion!

Why I decided to be here at my blogsite for my last few minutes living at the age of 58, I’m not sure, but was compelled to do.  If I did what I know I should, I’d be spending them in prayer.  I don’t always do what I know is best for me.

I have made decisions about this year.  I will be a hermit for the first time in my life.  I have a ton of reflecting and a ton of decisions regarding the direction of my life from 60 0n.  Since I’ve wandered rather blindly through the past few years with my main focus as trying to stay out of pain, I feel I owe it to my Lord, myself, and my muse to spend time reflecting and re-evaluating. At 8:13 AM, now 59 years old, a type of rebirth.  That has always been the theme of my life in any event – rebirth, renewal, re-creation.

My smallest dog has decided to bark his head off.  I suppose he needs to pee.

Nope, he was barking at some poor animal in the backyard and ran into another room when I went to attend to him.

I see my husband has laid out a glass tray and breakfast settings.  Seems like he’s planning breakfast in bed… nice!

I received one birthday card from a good friend.  I took those birthday calendars off FB.  It will be interesting to see if anyone remembers without FB’s annoying direction.

My plan for this year involves organization.  It involves decision. It involves focus on creating. I have been hurling through life with my main focus to stay out of pain as much as possible, and I am bored.  Of that, not of life. Of life, I’m never bored, ever.  I can’t understand people who are.  I can’t understand being so bored that one would revert to games, reality shows, romance novels, etc.  I cram as much as I physically can into each day, and when my body says “enough”, my mind is frustrated and wants to keep going.

My challenge right now are these Hyperbaric Oxygen dives.   They take place every day, usually at 12 noon. I’m not complaining, as they’ve done incredible things for me – excepting that I’m half blind right now – making me able to do things previously impossible.  I have lessened my pain medication by 66% or more. I have the energy to do more than one thing a day. Usually if I go out, drive, whatever, then I need to go home and rest. Depending on the day, maybe that’ll be it; maybe I’ll be in bed the rest of the day.  Or maybe I’ll be able to get up and sit at my desk and do computer things, or maybe even some undemanding artwork.  I’m finding now that I can do some things after my treatment, like go to the store, or make dinner (though usually not both).  But this is huge for me.

So now, my dear doctor wants me to try to stop taking all pain meds for the rest of my treatment time. Apparently the drug interferes with the efficiency of the oxygen.  My dilemma is that it’s activity that triggers the pain many times. Do I go back to being sedentary  to keep from having to medicate myself?  I won’t just “tolerate” it.  I have tolerated beaucoup pain in my sweet short life, and I’m done with that.  I’m so used to pain that I have the ability to ignore things that would send others straight to the ER.  I pride myself on being “tough” and a “real trooper”.  I was in the midst of a procedure where I was in and out of twilight sleep (isn’t that what they call it when you are “knocked out”?), and told the anesthesiologist “I’m a tough girl” as he pushed a twenty inch long syringe into the side of my neck.

So now my choices are – do I tough it out by continuing to experience my new-found energy?  Do I push myself and take whatever meds I need to, thereby not getting the full impact of this very expensive treatment? Or do I go back to taking it easy and resting, not doing more than the one comfortable activity per day (which right now is driving to the Island, having the dive, and going home) so that I don’t set off any problems?  It can be the most simple, ridiculous thing that sets me off.  The other day I was taking items out of a box and putting them on a table and photographing them, then putting them aside.  I took pictures of about 20 things.  I was in such agony – just from bending & straightening – that I put on my back brace & ended up needing meds and that was that for the day,  Another time I was moving supplies around my home studio and sorting through things for a while.  I was okay. Then I went to where my husband was and leaned down to give him a kiss.  Searing pain through my neck, then the muscle seized up.  That’s how it is with nerve damage.  You never know what simple thing will set you off.

I talked this over with my dh, and we both decided that I’ll do option #3.  So I begin age 59 with a two week “vacation”.  I love to read.  When I’m “down” I read since I’m not a TV person. This will be interesting since I can barely see.  Reading is now giving me a headache. It would have been nice to spend these 2 weeks catching up online and book reading.  I will need to find some interesting video, I suppose. Tomorrow’s challenge.

I can also talk on the phone, which I pretty much hate.  I have some hearing issues and they rear their ugly heads when I’m trying to hear whats being said on the other end of the line. Having Cricket, with it’s lousy reception, doesn’t help.

So I hope my friends understand this stage I’m going through.  I hope they don’t get insulted when I don’t go to lunch and don’t go to meetings, and pretty much stay home.  I am open to visits, as long as I can work on my art while chatting.

Sitting here on the computer is now making my low back hurt.  No, not enough to take pain meds, but enough so that I’d better stop soon.  Thank God I know where the letters on the keyboard are and that errors show up in red so mistakes can be corrected.

I believe we are approaching End Times, if not here now.  I believe every moment of life is precious and to be celebrated. I believe that we Christians need to focus on Christ’s Saving Grace to fulfill our  direction from the Prophets.  I am excited about this facet of my journey.

Detailed History of my Physical Issues

Detailed History of my Physical Issues

In 1990, I was living a happy, “normal” life. My husband had a good job with Westinghouse, we had a nice home in rural upstate Jersey, and I was Mom to two wonderful boys. I had my own business as a commercial insurance broker in Sparta, NJ, which was just getting up and running after I had gone to school for all my licenses. It was a good job for me, as a Mom, because I could work flexible hours and was my own boss. I was pregnant with my daughter at age 38. I adore my boys but was thrilled I was having a girl this time.

I had pain in my right shoulder radiating down my arm. I had this pain for a couple of years and chalked it up to carrying kids around on my hip. I went to a chiropractor who told me that my problem was that I didn’t come in for treatment enough. I tried to but sometimes the adjustments made my neck and arm feel even worse.

I had my baby daughter in the hospital and immediately had horrendous pain in my neck, shoulder and arm. I thought maybe I had really hurt myself during the birth. I could barely hold her to nurse. Pain meds were out of the question because of nursing.

I got home and was miserable. I could barely lift her or do anything myself. I finally went to my local walk-in clinic where I was friends with the doctor. He sent me for PT. The PT therapist was afraid to work on me. She thought I had disk issues, and told me to go back & ask the dr. for an MRI. Little did I realize but she had just saved my life.

The MRI showed that I had a lesion the size of a golf ball in my spinal cord, growing through the dura, imbedding itself in the nerves, and wrapping itself around a major artery. If the MRI had not caught it, I would have soon had a stroke at age 38, and no one would have known why. It was growing quickly and would soon cause irreversible damage, if not death. I was despondent – I finally had the family I wanted and now might not live to see them grow up.

I had to have my six-week obstetrical exam to clear me for the pre-op testing. I was miserable and in such pain. The pediatrician finally convinced me it was best to stop nursing so I could take pain meds. My surgery was scheduled for March 6, 1991; my baby daughter was not yet 3 months old. It was hard on my husband and my two boys as well, the youngest being three. I was blessed to have an incredible neurosurgeon, Dr. Ved Sachdev, at Mt. Sinai Hospital in NY. Although it was a rare kind of tumor, Dr. Sachdev had operated on its type many times. The outcome of the 8 and a half hour surgery could have been death, paralysis from the neck down, or varying degrees of paralysis. I had my head shaved and a nine-inch incision from my mid-head down my neck into my upper back. I had half of two vertebrae sawed off to get to the lesion. The nerve roots for C-4 and C-5 had to be sacrificed.

I was told I was “lucky” because I was only partially paralyzed on my right side, including use of my right arm. I didn’t feel lucky. I had to have strangers in to care for what I knew would be my last baby, my other little one, and my pre-teen aged son. I was in horrific pain.
My husband was wonderful through it all. This was the first time we had to exhaust our savings. Even though we had good insurance, there a large amount not covered, and certainly the outside help we needed wasn’t covered. Our modest retirement fund was now zilch and it was like starting over.

After being bed-ridden for months, I had to have three and a half years of intense Physical Therapy. It encompassed all my time and energy. I was able to gain minimal range of motion in my neck and some strength in my right arm.  My deltoid atrophied and my right arm is very weak.  I lose grasp of my right hand, and the muscles of the arm seize up painfully often.  I developed severe and debilitating migraine headaches that would put me to bed in a dark quiet room for days.  I have RSD – Reflex Sympathetic Dystrophy. There was no way I could return to my work. I looked into all kinds of treatment from having an electronic pain blocker installed in my hip to having healthy muscle transferred from my back to the front of my shoulder which was atrophying.  Everything was a struggle, most of all taking care of a home and family.  Every nickel went to pay for the help I had to have while my husband was at work.

But, luckily he had a decent job and while we weren’t living extravagantly, we could at least pay our bills and were a happy family.  At one point I fell on the ice and that helped cement the decision to move south.  We bought a modest little ranch in Bluffton.  My husband was employed by an electrical supply house and our kids were thriving.  I was functioning better and even began to teach some art workshops and sell some of my work.

Then came the car accident on Route 278.  I was slammed from behind by a car going full speed and pushed over two lanes of traffic and into the parking lot driveway of McDonalds.  I had quite a set back and returned to Physical Therapy. After about six months I became worse instead of better, and this time the pain was all over my body, both arms and legs had a burning pain and my entire back was killing me.  By this time we had moved into a bigger home and this one was two stories.  I found myself crawling up the steps slowly or avoiding them all together.  I recall being so exhausted that I’d lie in my bed until 3:00 PM and pray to God for enough energy to get up and take a shower.  My husband had to hire help to take care of me, drive the kids around, shop and do errands.  He worked so hard to make money to take care of us, and when he was home, he still had the laundry, the cleaning, etc., so life was challenging for us all. At least my husband made enough to get help for me but it really put a squeeze on the finances.

Around the time I began thinking that my life was barely worth living, going from doctor to doctor trying to get diagnosed and get some relief, I met Dr. Joseph Hickey.  He knew what was wrong with me (Fibromyalgia and Chronic Fatigue, coupled with RSD and my neuromuscular issues) and suggested I try Chelation Therapy to rid my system of heavy metals released into my system when I was in the accident.  I would have tried anything at that point.  The IV Therapy made me feel worse at first, and gave me terrible headaches. I was given Manitol after each treatment to help with the head pain. The treatments plus Manitol were $300.00 each, and I needed about 3 per week.  My husband was making decent money but that was still a huge strain on the family budget.  Once again, anything we had accumulated and then some was spent on treatment.  Dr. Hickey was patient with our paying late but we were stressed by owing money.

I felt better after a few months of treatment but finally stopped before the Doctor wanted me to because of the debt piling up.  Although I went back now and then for an IV Therapy or two, it was just too much to keep up with long-term.  I do credit Joseph Hickey for finally diagnosing me correctly and getting me on the road back to health.  Since then I’ve tried to take good care of myself, eat right, etc.  He sent me to Dr. Brosman for pain medication management.  I have been taking many types of medications for these issues for a very long time, and that concerns both my husband and me.

So all was going on well; we moved again back into a ranch, the kids were in high school and college.  Then, about two years ago, another shocker:  City Electrical Supply’s branch in New River closed it’s doors and my husband was laid off.  We went from a decent salary, a company car, company cell phone, life insurance on him, health insurance for all of us – to nothing.  Of course he tried unceasingly to look for a job but there isn’t much out there for a 61-year-old man who was pretty far up in management, self-made with no degree and a pool full of recent college grads willing to work for minimal pay.  Plus with the economy and the lack of jobs in general, things were not looking good.

He decided he should fall back on his musical talent.  He has been giving guitar lessons at a studio we rented and performs whenever he can.  I was starting to be up to teaching some art workshops at the studio myself. It was very tight financially but we were okay and both loved what we were doing. There were no vacations, no dinners out, no buying much of anything “new” for a very long time. The last time we had a vacation was a 3 day cruise in 2005 for our Twenty-Fifth anniversary. Our cars are from 1999 and 2002.  But we were okay.  Life was good and we were optimistic that it would get better.  We were excited to get the arts and music studio off the ground.  I was feeling better than I had in a long time.  Not fantastic by normal standards, but if I really paced myself, I could slowly accomplish some things I hadn’t been able to prior.  Life was good again.

Then SUDDENLY I crashed. Just like that. Set off by who knows what… maybe stress?  There are just so many times you can hold up when your world shatters. I stayed in my bed, unable to lift my arms or my head, or keep my eyes open.  When I wasn’t sleeping, I was crying with pain. The burning in my legs was unbearable. The pain in my back was sharp, throbbing, and unrelenting.  I felt hopeless.  I actually began to think it would be easier to not have to go on.  I was like that for a couple of weeks.

One recent Saturday when I was particularly despondent, my husband urged me to call Hyperbaric Therapy. I had seen the articles and ads and always thought it might be a good idea for me. I had even asked Dr. Hickey what he thought.  I called the number, never expecting anyone to pick up on a Saturday.  I wanted to simply find out if insurance would cover treatment. To my surprise Dr. Pete Stephens got on the phone. He did verify that my insurance wouldn’t cover the treatments.  But he wouldn’t let me get off – he kept asking me questions about myself and I told him what I could muster the energy to talk about. I was a real basket case.  He persuaded me to come in and begin treatment. He has told me that the goal is to get me off all the prescriptions I take to get my body to even function. I’ve been taking many types of prescription drugs for years.

I have had ten dives so far but can’t pay every week as we did the first week.  We have a car to pick up from the shop, studio rent and electricity are due, finances hanging by a thread, and I am stressing a lot. So is my husband.  Dr. Pete thinks I am looking better but advises that 40 dives will be what I need for the pain and RSD.  I gave him this letter to read to make sure I got the factual information correct.

We were just starting to get on our feet again – starting over once more at the age when most are thinking about retiring.

I do want to finish this treatment because I have much optimism about what I’ll be able to do again when I’m done. I need to get through the obstacle of  illness and pain so I can live.  We try to do many things for the community,  we promote many worthy projects, and we try to give of ourselves.       We want to be able to continue that.