Thursday, 28 August 2008

Catching up

Sorry to my friends who are wondering if I disappeared. Each morning I wake up with prayer and gratitude and things to do and goals and ask the Lord to help me accomplish as much as possible, but within hours, my body has betrayed me and I can't push myself no matter how hard I try and pray. People with good adrenal glands can push themselves through their pain and fatigue, but lupus destroyed my adrenal gland, so "my get up and go, got up and went". 3 days ago both my mother and I were taken to the hospital in separate ambulances at the same time. We both have lupus, and when the barometric pressure gets too high, we both get really ill, but the lupus affects different parts of our body. That was the second time I had been to the E.R. that day, and the first time, the meanest, most disliked, and actually the most dangerous Dr. was on call in the E.R., and again I was treated so badly, and in too much pain to defend myself, and didn't have anyone to go with me. They tried 7 times to get an IV in me, and in all the many years of me getting IV treatements, I have NEVER had them try these very painful spots. It almost seemed as if the Dr. told them to make it as uncomfortable as possible so I wouldn't be in a hurry to go back there. They tried places like my inner arm almost in my armpit, and my feet, and other places on my arms and legs where I have NEVER had someone look for a vein. I already stay away from the E.R. and hospital until I am screaming into my pillow and can't handle the torture anymore. I have even stayed home when I thought I was truly dying from heart pain, because I couldn't defend myself or advocate for myself if I went to the E.R. myself. Well, I am SO ready to get up and out and be among the living...and it seems the harder I try, the farther away that goal gets...but I will keep trying, knowing that the Lord has a reason for all things. Back to asking the Lord to help me hour by hour. I pray for all my computer friends. Friends are what makes life worth living...and I hope I can help some of you somehow in this life. We are in the last days, and we are all struggling.



Thursday, 14 August 2008

To Serve the Lord...MY ONLY DESIRE!

There is a BEAUTIFUL song that I was not able to embed here. I am smart enough yet to fix the errors, so please see/hear the song here:

And here are the Lyrics.

My Life's Song

Empty hands held high
Such small sacrifice
If not joined with my life
I sing in vain tonight
May the words I say
And the things I do
Make my lifesong sing
Bring a smile to You
Let my lifesong sing to You
Let my lifesong sing to You
I want to sign
Your name
to the end of this day
Knowing that my heart
was true
Let my lifesong sing to You
Lord I give my life
A living sacrifice
To reach a world in need
To be Your hands and feet
So may the words I say
And the things I do
Make my lifesong sing
Bring a smile to You
Let my lifesong sing to You

New Stem Cell Finding

I have been following the progress and politics of stem cell studies. There are hundreds of incurable diseases that could be cured with stem cells. The big hold-up of stem cells being used, is that uneducated leaders believe that the only place you can get stem cells is from aborted fetuses (feti?) and by embryos that have been frozen for later implantation into infertile mothers. This is not true. They have found stem cells in bone marrow, umbilical cords of mothers who deliver babies, and now even in menstrual blood! There is a story on a friend's blog about how we can save our menstrual blood so that it might save the life of someone in our family when stem cell use gets approved. Already there is a program for saving mothers' umbilical cords after birth. My daughter has saved hers, thinking someday it might help to cure my lupus. This website has a picture of the kit offered to collect and save the blood, and links to the organization that discovered this new advance in science, and offers the service. Please go to
http://mistipurple.blogspot.com/2008/07/ladies-can-save-lives.html . Thanks MistiPurple for writing the article! You are doing great work to aid in healing many diseases in the near future!


Wednesday, 13 August 2008

Doctors and Women

     I'm frustrated today. I have just spent almost a month trying to get a friend medical care. She keeps getting ignored and passed around like me and many other people in the country. She had some dizziness, and the doctors kept telling her it was nothing, and wouldn't even give her the usual prescriptions for dizziness. It got worse, she has a toddler and her step-son of 11 staying with her who wants to be entertained every minute. She would cook a bit, lay down, cook more, lay down. Then it got worse so that she was holding onto the wall every time she stood up. Then she was crawling on the floor. She went to the E.R. and they told her to talk to her family Dr. and get referred to a specialist. She called her Dr. who had seen her twice about this and said that the E.R. had found an inner ear problem and that he should give her a referral to an ear, nose and throat specialist immediately. The Dr. called the ENT specialist, he was on vacation, so called her back and left a message on her answering machine that he was on vacation, then he just forgot about her! He ignored her as she tried to call him at work and home again and again for help. It seems like he was thinking that the illness would stop progressing until she sees a specialist in 2-6 months...I don't know what he could have been thinking. So today she is so dehydrated from the nausea of dizziness that she is passing out, going unconscious to even try to get to the bathroom. I told her to PLEASE go back to the E.R. and take her husband with her as an advocate. They went, took her into the hospital in a wheelchair, she was again sent home to see her family Dr. (In Canada you can't see a specialist without being referred by a family Dr.) The husband got mad and called the family Dr. and told him that he is "watching her get worse and worse daily, and no one is doing anything, are they just waiting for her to die? She could not even get treatment for dehydration! She needs to be in the hospital! " Immediately the Dr. said to go back to the hospital, he will admit her. A MAN said something to the Dr., and the Dr. finally listened! A woman can talk and beg until she dies and it seems no one will do anything, but if they have a husband or male to speak for them, something happens!  I'm glad she is getting into the hospital, but now I wonder how much help she will get with that family Dr. treating her in the hospital because he didn't know what to do and wasn't willing to give her dizziness medication earlier. Will she get it now? Will he even know what to do, or even care enough to research the problem and do something to help her survive until she can see the specialist?
Case #2
    When my Dad was alive and we were in the E.R., the Dr. delayed giving me my pain shot until I was in so much pain I was crying and shaking. It had been about 10 hours. He told me the x-ray showed nothing so I should go home. I told him lupus does not show up on an x-ray, and that I could not even sit up to get out of the E.R.  He asked how I got in there. I told him I was not in so much pain when I got there. he said he could not give me pain medicine if no tests showed anything.  My Dad sat quietly by me, sort of as  a witness in case I was treated badly. Finally my Dad spoke up and said "Why don't you just give her the pain medicine so we can get out of your way?" The Dr. said, "Oh, ok." A man spoke, the Dr. listened. No questions asked, and the pain medicine was brought!
     I remember stories of women not being taken as seriously as men up until the 1970s, but with the newer doctors, I thought that had mostly disappeared. I talk to people in other countries, and it is still very much that way, that men are taken more seriously than women. A man can complain of pain and immediately he will get more and stronger painkillers than a woman who has suffered longer and with more pain. That's a documented fact. I found it in the book called "How Doctors Think" by Jerome Groopman M.D.
Case #3:
     My brother's sister-in-law knew something was seriously wrong and went to a Dr. She lives on the other end of the country, so obviously it's a nation-wide problem in Canada. She was told it was nothing. She insisted there was something wrong and made an appointment with another Dr. He also said it's nothing. She made an appointment with a third Dr.  He also said it was nothing. Part of her thought she should listen to the Dr. because they know more than her and you are supposed to respect them and obey them, but she made an appointment with doctor #4. Keep in mind that to get an appointment with a Dr. takes weeks, so she was waiting many weeks between each appointment. In the USA often you can see the Dr. within days. Not here.  By this time her husband went with her because of her getting so much worse. The 4th Dr. listened to her, took tests, and told her that she was now terminal, incurable, inoperative, and that she should have gone to a Dr. a month ago and she would have been ok. She just lost control of her emotions.  More than a month before, she was still making appointments with doctors trying to get someone to listen to her! Because a man was with her this time and speaking for her,  she immediately got the tests! She has small children and now a whole family will be destroyed because of lack of compassion, lack of desire to diagnose a difficult problem, and no longer do doctors listen to all the symptoms to try to diagnose a disease. They listen to one or 2 symptoms then take blood tests, and go completely on test results, and if the test results don't show the disease they were thinking of, instead of looking for another disease, they tell the patient they are fine and send them home to suffer.
Case #4. Me again. I have a heart problem that has been completely ignored, that one day the heart specialist told me he was very concerned, then 3 days later said he must have made a mistake and the tests must have been mistakes, and sent me home to suffer.  When I went to my family Dr. he read me the report from that specialist, which told about my heart problem but the specialist said he doesn't know what causes it or what to do about it, so instead of helping me find someone who WOULD know, or researching my heart problem, he just said he must have made a mistake, and sent me home to suffer.  Yesterday I asked a new internet friend who is a Dr. what would cause this certain abnormality on the heart test. He said it was quite serious, and that if a MAN came to him with that problem, he would give him a pacemaker immediately. I said "A man? Why not  a woman?" He said that it was true, but unfair that with heart disease, men and women are treated completely differently.  He said women with heart complaints more often get told it is just stress and to change their lifestyle. Men get treatment.
My mom is upstairs suffering, waiting, because no Dr. is willing to think about any case that is a bit difficult. 
My life is on hold, my anxiety raising as I wonder if I will even be well enough to be a wife when my husband gets home, or if I will even be alive. I have at least 4 online friends who have all told me the same thing this month, that they are being ignored and sent home to suffer alone.
    Maybe if my husband were here, if he would speak to the Dr. as my advocate and as my mom's advocate, we would get some results.
    It's the same story with an auto mechanic. they barely ever talk to women, if they do, they think we know nothing and take advantage of us. A Dr. is just a
mechanic of the body instead of  vehicles, and they no longer have the compassion or patience to listen and to investigate something chronic or unusual...unless a man speaks up for us.
   I don't have any answers. I don't think it will get better. We are blessed indeed if we find a compassionate Dr who will give us more than 5 minutes, will listen and will really try to find the problem and the remedy. It just adds to my frustration of suffering, laying here in pain and going unconscious and no strength, not alive but not dead. It adds to the stress and pain knowing that no matter how much pain I get in, or how close to death I become, I won't get any treatment. They have stopped treating me for over a year now except for my pain meds which I'm grateful for but would rather have a remedy! I am jealous of everyone who is fully alive, and of everyone who got to pass on to the next world. According to my beliefs, even if I passed away, I would be living fully and joyfully in spirit in the next world, so my desire is to LIVE and to live fully, and if I can get treatment here to make that happen, great. If I pass away and can live fully in the spirit world, fine...but this limbo world of not functioning and no human contact is inhuman. If I could get feeling better, then I would live life with more passion than most people have.
    I am very grateful for the many blessings I have, and I enjoy the small pleasures in life, because those are the only pleasures we have, and I know life could be so much worse. Gratefulness is a big part of my relationship with God, and that's what keeps me from being as miserable I could be without the Lord in my life. I have far to go to learn complete trust and peace...but I will keep practicing and learning in that area.
I just had to make people aware of the facts that women are not treated as often or as aggressively as men are, and that there are MANY people suffering at home WAITING for help, either waiting for more appointments, or just being told there's nothing to be done, go home and live or die with it. For those people who believe "That person must be faking, and if they were really THAT sick, they would be in the hospital or on some medicine or they would be dying"...that is not the case at all.
    I called a church lady this morning for this friend who was put in the hospital today. It was before we could get any help for her. The lady I called is in charge of service projects for those in the church who really need help with meals etc. because of illness or accidents etc. and she had an opinion that surprised me, but also taught me what most people must think of me and my mother, so that is why we are avoided like we have the plague. She said "If that lady was REALLY that sick, she'd be in the hospital." I said "that's not true, if the doctors are not listening and are not looking for the cause of her problem." Then she said "There is medicine for everything these days. If the doctor thought she needed medicine, she'd get it." I just told her there is not medicine for every illness, there are not even tests for every illness, they have not even discovered every illness yet...then I said my goodbyes, because the woman in charge of compassionate service was so indifferent, so my friend couldn't even get help from the part of the church that was in charge of helping members who really need help. Why was I surprised? Mom and Dad and I lived in this house,  for 11 years and can not get one person to visit or call or help. Mom and Dad helped build this church for 50 years, and we still call and check on members and consider them to be friends, but we never get a call or visit in return.  
    My friend felt so hopeless and like we don't even live in a civilized country. She is from Chile, where they are all poverty stricken, but still the hospital would help if she went there in her country, and the neighbors all chip in and help each other!  She is now in Canada. Immigrants here say that the biggest adjustment is the loneliness. People here don't have time to socialize like people do in most other countries.
   My friend thought she'd have something done within a week. I knew just how my friend felt, and told her that even though she told her doctor she wants something done this week, she probably would not get it. NOTHING in Canada health care happens in a week. I can be in acute pain, and it will take 1 week to get to see a Dr. for it. My family Dr. BEGGED the heart specialist to put me in the hospital THAT DAY that he saw me, but it took 6 weeks to get an appointment with him and he would not treat me before that appointment, then it took 2 months of testing after that. They just don't care how long you have to go home and suffer and that you could possibly die while waiting. This is why I think we need to take responsibility for our own health, not treat doctors as all-knowing Gods, and to seek out help in all areas. If that means more doctors, or natural remedies, look for it. I know also that your finances might stop you from getting further treatment. That's where I am...but still I can study and learn more and choose which test or treatment I think I could seek out if money did come available. 
    It's so frustrating. Women are the heart of civilization, yet we get a lower standard of care! If the health of a nation fails, the nation will fail.
    Again, here is the link of countries that have the best care in the world, down to the worst care. I daydream a LOT about getting to another country to get some help. http://www.photius.com/rankings/healthranks.html

Sunday, 10 August 2008


One of the most comforting things I've ever read!
Jasper National Park, Alberta
(about 5 hours from me)

In pastures green? Not always; sometimes He
Who knoweth best, in kindness leadeth me
In many ways where shadows be,
Out of the sunshine into the darkest night,
I oft' would faint with sorrow and affright,
Only for this - I know He holds my hand;
So whether in the green or desert land
I trust, although I may not understand.

And by still waters? No, not always so;
Oft' times the heavy tempests round me blow,
And o'er my soul the waters and the billows go
But when the storms beat loudest and I cry,
Aloud for help, the Master standeth by
And whispers to my soul, "Lo it is I."
Above the tempest wild I hear Him say,
"Beyond the darkness lies a perfect day.
In every path of thine I lead the way."

So whether on the hilltops high and fair
I dwell, or in the sunless valley where
The shadows lie, - what matters?
He is there!
So where He leads me, I can safely go.
And in the blest hereafter I shall know
Why in His wisdom, He hath led me so."

John F. Chaplain

Friday, 8 August 2008


Scientific studies that PROVE what so many of us THOUGHT was true...that the barometric pressure DOES make us sicker! It raises the inflammation "cytokines" in our blood!

"Summer Weather Adding to Your FM Pain?

The weather is warm and the skies are mostly sunny, so why are you feeling so lousy? It may be the storms or constant changes in summer weather patterns that are causing your increased symptoms.

Daniel Wallace, M.D., who treats FM patients in the Los Angeles area, noted from his clinical experience that changes in the barometric pressure are more important than whether it is hot, cold, wet, or dry. A study done in Cordoba, Argentina followed patients with various rheumatic diseases that may co-exist with FM (rheumatoid arthritis, RA, and osteoarthritis, OA) as well as a healthy control group. All patients were asked to record their pain on a daily basis over a 12-month period. Researchers followed the temperature, humidity, and atmospheric pressure during this time. Patients with FM reported more pain when experiencing cold temperatures and high atmospheric/barometric pressure. High barometric pressure occurs when the skies are clear and low pressure occurs when storms move in. It is hypothesized that increases in barometric pressure could lead to increased production of pro-inflammatory cytokines, which correlate with the pain intensity experienced by FM patients.

Another study done in Norway, noted that patients who have lived with FM less than 10 years were more weather sensitive than patients who had the illness more than 20 years.
But while patients seem to report more flares in January, watch out for the summer storms because they cause dramatic fluctuations in barometric pressure. The summer and fall seasons are usually full of weather changes that may zap your energy and intensify your pain. If you live in the hot Southwestern United States, try to stay out of cold, air conditioning drafts. Dress in lightweight but layered clothing so that you do not swelter in the outdoor heat or shiver in the grocery store and other chilly environments. If you live near a coastline, get extra rest and take care of yourself during the summer storms.

Your ability to tolerate the heat might also depend on your gender. In general, women prefer warmer climates more so than men because of differences in the way their sympathetic nervous system operates. When subjected to hot environments, this system constricts the peripheral blood flow more in women than in men. The result is a cooler skin temperature for women. Although the sympathetic nervous system is a major player in the body’s stress responses, this difference between men and women cannot be explained by psychological stress.

Charles Vierck, Ph.D., and colleagues at the University of Florida, tested the temperature preferences of male and female rats to bypass any psychological factors that may influence temperature sensitivities.* In fact, more than one strain or type of rat was tested, but the results were still the same. Female rats were much more cold-sensitive and preferred warmer temperatures, while male rats showed the opposite preference. These results mimic what has been shown in people and could imply that men might prefer cool wraps to soothe their achy muscles."

Taken from literature by: Fibromyalgia Network … Helping Patients Since 1988
PO Box 31750 Tucson, AZ 85751-1750 (800) 853-2929

There are also individual differences between people, such as many of us who can't handle damp weather, many who can't handle extremes of hot or cold. I guess that really does make me a "fair weather friend" because I'm a useless friend if it's not fair weather. lol.


Just hanging in there!

Wednesday, 6 August 2008

Research Study

Here is a website for Americans with Fibromyalgia that might be interested in trying new medications for the disease. http://www.ifeelpain.com

Friday, 1 August 2008

Humor in Illness



Let's face it. . . chronic illness can have its humorous moments if we look for them.
You know you have a chronic illness when...

  • You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.

  • When you hear the term "Club Med" you automatically think of the hospital.

  • You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.

  • Your medical records have to be transported on a cart.

  • To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.

  • Your favorite Oprah program is when Dr. Oz is on.

  • To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.

  • When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.

  • Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."

  • Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.

  • You have a panic attack in public and say, "Praise God this is only the fourth one today!"

  • You're invited to the wedding of the gal who works at the hospital lab.

  • You're child thinks watching you do injections of medication is "cool."

  • You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll makesomething up if you'd like.

Top 10 things NOT to say to a chronically ill person

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

BOTH ARTICLES Copyright, Lisa Copen, Reprint permission granted if the following is included:
Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week,


One year ago in July I was told I had 1 year to live. This is August 1st, so my 1 year deadline (no pun intended, lol) is over! I came close a few times to not making it, but now I am living on...not borrowed time...but on God given time! WOOHOO! Since it's not my time to go yet, and I obviously have something left to finish here on earth, I am praying, researching all I can to get feeling better and praying for the strength to do the things that I find that I need to do to get stronger and healthier.
Thanks to all who have congratulated me!

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