Chapter 46 Life's Adjustments

                                                     Chapter 46 Life’s Adjustments

Steph studied child development at Uni so she wasn't ignorant on the subject, and we talked of baby care often on the phone. Her baby thrived.

    One day while she was pregnant with her second baby, she planned to visit me, and I decided to get the bathroom mopped over before she came. I was past being able to use a regular mop and had bought a little short one about three feet long. It was agoniing work, and before long I put my foot on the soapy floor tiles and slipped. I was unhurt, but stuck on the floor unable to move, I was forced to wait until she arrived.

     When she came and found me, she was horrified and upset. Interestingly, the baby, nearly two, was delighted, and collapsed into my arms hugging and kissing me, ecstatic that I was down on her level. She seemed to think it was time to play.

     I wanted Steph to be cautious because of her advanced pregnancy, but she insisted on dragging me out of the bathroom and propping me up against the bed. Then she tried to lift me. I’m not small; I’m what used to be called tall, and overweight since being less active.

     Desperately, I begged her to go across the road and ask for help from the young woman in the house.

     “All right, I’ll just put the baby in the lounge, Mum,” she said, “and then I’ll go.”

      When she returned she was aghast to find the baby with the tail of a lizard in her mouth.

     “Mum,” she groaned, “My daughter had a lizard’s tail in her mouth, and it was still wriggling!”

    The two helpers together got me up easily and I was soon back walking with my walker.

    Although she had been told several times by the hospital staff she was having a girl, to everyone’s delight, especially her husbands, she gave birth to a son in 2005.

    In the late 90‘s Ashley too obtained a job at Princess Alexandra Hospital. Previously, he taught karate lessons and had a variety of other jobs. Though he started at the hospital as a messenger, his integrity and ability to help out in any job asked of him paid off. One day as I sat quilting at the sewing machine, I got a rare phone call from him.

     “Hi Mum, just wanted to let you know I got a new job...I’m the manager of medical records now.” We had no idea he had applied for any jobs. A mother needs more of those kind of phone calls.

    At karate he met a pretty young colleague and fell madly in love. She had been married twice before and had four sweet little children. The couple married in 1998. Unfortunately, by 2000 they were separated. They divorced in 2002, and in May of 2005, Ashley was married for the second time to his new sweetheart, 10 years his junior. They already had an eight-month-old daughter. They now have two sons as well.

    In 2000 I was still using the stick at work, and what caused me so much agony was walking to the toilet from the chemist shop baby clinic. It became very busy and I felt embarrassed to walk away while mothers were sitting there with their babies, waiting for a consultation with me. There were times when I sat in agony, and fear of a disaster.

    For a time, I took herbal tablets for a sluggish bladder, and they worked, but after a while, I developed side effects from them. Forever after that I relished the sound of that trickling water in the toilet. What a privilege! Most people with M.S. have similar problems. Medical intervention usually consists of catheterisation, but I have resisted this consistently for many years, knowing full well that catheters inevitably introduce infection.

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     Back in 1997 I had gone to see the film, 'How to make an American Quilt,' and the minute the movie finished, I knew I too had to make a quilt! Steph was overseas, and I made my first quilt for her. Not knowing anything about quilting, and not being able to use a needle because of hand weakness and loss of fine motor skills, I devised a plan I thought I could manage. I bought a large quantity of unbleached calico, and collected lengths of coloured fabrics that I took a fancy to. Finally, I set to work with pen and ruler and ruled up squares, cutting them out with scissors. The calico squares were an inch larger all round than the coloured squares, and I machine-sewed one on top of the other, making a half inch seam and poking loose synthetic filling in as I sewed. After sewing all the squares together, though quite imperfect, it looked attractive, (and it was my own creation.)

     In 1998, (via Ashly’s wedding photographer,) I was persuaded to try N... vitamins. It was suggested I consult a highly qualified naturopath near the Gold Coast who also used them, and I attended his clinic for quite some time, until the cost of the supplements and the distance to travel became too high a hill to climb.

    Also in 1997 I visited a new dentist who was very interested in nutrition, (so much so that he treated his patients nutritionally as well as dentally,) and his expertise included acupuncture and electroacupuncture. He employed a naturopath in his rooms to assist patients on to a healthy diet, and he understood a lot about heavy metal toxicity. He gave me literature explaining mercury toxicity and its possible link with M.S. He had a particular interest in M.S., and I was grateful for his help and advice.

      The dentist used electroacupuncture to test my levels of heavy metals and toxins. The results showed I had high levels of Mercury, arsenic and other toxic substances. On his advice I took  specific vitamins and minerals, and he removed all my amalgam fillings, three of which were root fillings. Those were particularly difficult, took two hours each, and were the worst ordeal I have ever had to endure at the dentist. This was because, according to specialist dentists, when root fillings are removed the bone should be scraped to stimulate new bone growth, and remove all trace of infection. I understand it is a specialised type of dentistry, requiring skill to avoid causing the patient to swallow amalgam fragments and result in more toxicity to the bloodstream.

     The dentist was also using N... products at the time, and sold the toothpaste at his surgery. I started taking vitamins and minerals according to his advice.

    After the dental treatment failed to make any noticeable improvements in my condition, he referred me to a GP he knew who had a particular interest in nutrition. The new doctor administered intravenous DMSO, (dimethyl sulphoxide,) via four monthly IV injections, to rid the body of Mercury, and when that had limited success, he gave me DMSA  (dimercaptosuccinic acid) tablets to rid the brain of Mercury. That also failed to act significantly.

    Incidentally, on the Internet the GP came across a request from a research doctor in Melbourne for blood samples from patients with autoimmune diseases. As it happened, he had three patients with M.S. (including myself).  He took the blood samples from the three of us and sent them away, only to find that we all had coxiella burnettii, the causative agent responsible for Q fever. Consequently he advised me that he would give me a script for antibiotics. There were to be four different antibiotics used once a month for a week each, over a four-month period, rotated for a period of up to two years, depending on results. During the off three weeks of the month, abdominal integrity was to be restored using probiotics.

    His words to me were, "You won't need to come back, I'll call you when I have the script ready". (I understood he wanted to do some more research on the latest treatment and appropriate antibiotics for Q fever.)

    Three weeks later, as I hadn't heard anything, I rang his rooms and left a message with his secretary, questioning the delay. “I’ll leave a message in his pigeonhole,” she responded. I'm still waiting for his call!

    For what it was worth in 2008 via e-mail, I related the story of the Q fever to a research doctor at Sydney University. He accepted it graciously.

    It is disappointing that I made no great improvement while I was under the care of either the dentist or his professional colleague, although I must admit that I was quite well in general health during that time. In fact, ever since I started on my better nutritional programme with Laurie Power, I have felt well and people have remarked that I, 'look so well'. In fact it’s only rarely that I’ve had a cold; and that has only been after I’ve strayed from the diet. Often people were, and still are, astounded that M.S. was the problem that I had.

    Again in1997, a friend referred me to a massage therapist. She was unfamiliar with MS, but had managed to cure a client of Dowagers Hump, and another of Elephantiasis. She massaged me six days out of seven for two years, for the princely sum of $10 a time. They were full body massages which took two hours. At first I improved somewhat, but after a year I realised I was still slowly deteriorating. I wasn't surprised because I knew she couldn’t cure me. But because of her earlier triumphs, she was disappointed.

    One day she suggested, “Why don’t you just get up and walk without thinking about it? You never know, it might work.”

    I replied, "Oh, that’s happened before--and that's when I fall." 

    After that first two years I had massages about twice a week, but eventually I realised that the two hours was too long, and it was taking me some days to recover. I insisted she reduce them to an hour, and soon after that I started using the walking stick.

    Two other friends, were into natural health in the most extreme way I have ever known. The couple introduced me to many things over the years, some of which I adopted and some I rejected. They were always sure they had found the answer this time--could cure my MS this time. I couldn't possibly list all the different cures or treatments they tried on themselves first. Always certain they had found the answer this time, they were very convincing. Peter, being the more level headed of the two of us, often rejected their ideas before I did. One time I remember being persuaded to drink a cup of water with a teaspoon of garden minerals mixed up in it, (which were purchased from a landscaping yard.) After a while good sense prevailed and I stopped doing that though. For liver cleansing, they used Dr Gerson’s cancer regime of coffee enemas, but one of the most bizarre treatments they tried, which I never for a moment considered, was drinking their own urine.

    They did however, in 1996, introduce me to an American company selling vitamins and minerals  of a high quality. Notably, they also sold natural progesterone cream under another name. I listened to cassette tapes of Dr John Lee talking about natural progesterone, which were very interesting, and staggeringly enlightening. I was having some mild, but nevertheless aggravating, menopausal symptoms at the time and the progesterone cream made a big difference. I was also happy to know that it was capable of balancing all the hormones in the body, and also increasing bone density. In fact there were very many benefits to using the cream and I still use it today, under the guidance of a GP. Although it was freely available when I started to use it.

    I felt so well in ’97 I decided to apply for a part-time job in a baby clinic district near home. I was also working for the Fortitude Valley Child Health Clinic at the time which incorporated the Royal Women's Hospital home visiting program, which I was being trained to do so that I could relieve the sister who was already doing that job. She was a sweet girl and one evening she came to my house and advised me about words and phrases that I needed to use at my interview for the job.

    This was the time when we were undergoing all the changes brought on by the Goss Labour government. It was mind blowing. She showed me an 18 page application she had written out for a job. The repetitiveness and the airy fairy wording were phenomenal. Peter had helped me with the written application that I’d put in for my job, and we had used a bullet-point format which meant that I had sent in a fairly brief application. I prepared palm cards with key words for my interview, and faced a panel of three charge nurses. The chairman of the panel told me later that I had topped the interview. I must have done a good job on those fancy words and phrases! But because my written application was so brief, I didn't get the job.

    As it turned out, I realised within months that I had been lucky not to get that position. My legs were weakening to the point where I was having bad dreams about coping with daily life. If I worked a day in a baby clinic, I dreaded having to get up from behind the desk. It took all my strength to stay steady--to not look as if I was drunk. One night I dreamt that I was clambering over rocks along the side of a busy highway. I remember the terrible effort, but I also remember how pleased I felt that I could jump from one rock to another. In reality, I could no more clamber over rocks than fly to the moon.

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      After my first amateurish quilting effort, a book on colour-wash quilts inspired me to make a quilt for mum. I used a picture as my guide. I lost my temper so many times though, that Peter begged me to do the Beginner's Quilting course. I was determined to finish the quilt once I’d got started anyway, and despite the terrible quality of my sewing, Mum loved her quilt, and still uses it today. The cost of the course was $90, but with Pete's encouragement, I decided to bite the bullet. I loved that course.

      Although still driving, on arrival I couldn't carry my sewing machine into the building, and was forced to depend on someone else to carry it from the car and haul it into position for me. They did it willingly, but of course I was embarrassed.

    Although my right foot was starting to drop, I still had plenty of strength in it for the sewing machine pedal, (and the car accelerator pedal....Thank goodness!) Eventually though, the foot became so weak that I had to lift it off with my hands under my knee. Many a time the machine went on a wild ride on its own while I struggled to get my foot off the pedal. When it became just too weak to do the job, I pushed the pedal over to the left and used my left foot. It didn't work for driving the car though! And one day while driving home from work, I got too close to the back of another car which pulled up suddenly, and it frightened me half to death. I took to the gravel, struggling to get my foot off the accelerator, and avoided disaster, but I knew then it was time to give driving away.

    Anyway I attacked the whole quilting process with zeal and despite the fact that one quilt could take six months or more, I ploughed on and in the end made quite a few quilts.  

    Down at The Patchwork Tree quilting centre one day when I was lamenting my inadequacies, the manager said to me. "Anything you do, is right."  I found that very encouraging, and never forgot what she said.