Wednesday, 24 October 2007

Husband is in danger, prayers appreciated!

Hello all;

I ask a favor of you please. Please pray for my DH (dear husband, for those not familar with the terms of DH, DW, DD, DS, etc) and the area he lives in. In the middle of the night, I got a call from him saying there will be a military action taken between the Taliban and the military, so all communications and roads will be cut off to them for a few days, so we won't be able to reach him by phone or computer or radios of any kind. He bought extra food to last a few days so they don't have to leave their house. It will be very dangerous. He has already lost 2 relatives and his family are getting kidnapping threats, and a man was shot 1 meter away from DH (dear husband) and the blood splattered all over him. Swat is such a peaceful place, that was an independent country where Buddha was born. Pakistan somehow overcame the leader of Swat in 1979, so they hate being called "Pakistanis". They have been trying to peacefully become their own independent country again all these years, and now the Taliban show up there and bring violence and terror and murder of innocent victims to a town that has never know violence. I can't believe the Taliban chose that area to go kill innocent people. I didn't think I would be involved and so close to people going through war. My sons in law also are in the military. One served one tour in Iraq and now is being asked to go do another, and the other son in law will never see battle but he might be called to do airplane maintenance or be a pilot. He already went to Guam for that purpose, but since he's only in the reserves, he did not have to stay long. I remember as a teenager, I prayed not to have boys if they would have to go to war, but having girls is the same worry, because the boys that marry the girls are now my "sons". Below is the news story about what I just explained.

Google News Alert for: Mingora pakistan

Hindu - Chennai,India
Additional Frontier Corps troops had been deployed in Mingora, Saidu Sharif and Matta areas of Swat "to reinforce the local administration and police in ...
See all stories on this topic

Sunday, 21 October 2007


I want to share with you something this man who wrote this book who went through the WW2 holocaust says about love.

"It just occurred to me that I didn't know where my wife was. In fact, I didn't even know if she was alive or dead! I knew only one thing--which I have learned well by now: Love goes very far beyond just loving the physical body of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not one is present, whether or not he is still alive at all, doesn't seem important. During all the years of prison life, I could not find out if she was alive, but at that time, it didn't seem to matter. I still loved her. I knew that. I was still alive because I could love. There was no need to know if she was alive or not because nothing could touch the strength of my love, my thoughts, my image of my beloved. Love goes past death into the eternity.
For hours as I stood hitting the icy ground with my shovel, my thoughts would be with her. I would ask her a question or tell her something in my mind, and I would imagine what she would reply to me. More and more I felt like she was present, that she was with me; I had the feeling that I was able to touch her, able to stretch out my hand and touch hers.
The feeling was very strong: she was there. "
-Viktor Frankl "Man's search for meaning

Honey...that's how it is when I think of you sometimes. You are in my mind every second, as if you are here. I wonder what you would say or do every moment as I go through my day. SO OFTEN I smile, knowing what joy it would be to show you so many new things you never saw or experienced, and also I get afraid sometimes, knowing that I can't do all the things you will need...but I am learning slowly, and have to remind myself, that we can't plan those moments. We just live life as it comes, we deal with it when it happens. Sweetie, the same way that man felt his wife's hand, when I hug my "hubby pillow", I AM laying my head on your chest. When we are talking about intimate things, I DO feel you there. You are real to me. No one could ever understand how a person could be so close to someone they never met, but I have met you, I have been with you in every way, and felt you. When people go through such intense feelings and situations as you and I have had to bear, we realize that we love more than just the physical person. We love their spirit, and that lasts through time, and space, and separation, and death. I love you deeper than most people on earth have ever experienced.
Love, Wifey


Earlier I sent a post called "Ten Guidelines From God". That message and this one I just found that I didn't finish writing would have gone very well together. I should have sent them together.

Sharing with you a message that really fed my spirit. I like "Hour of Power" . One Sunday Robert Schuller Jr. spoke of "Happiness From Within." These are just a few parts that I loved enough to keep in my journal. If you want to read the whole message, go to

"Do not be anxious about anything
but in everything by prayer and petition
with thanksgiving, present your requests to God
and the peace of God which transforms
all understanding will guard your hearts
and your minds in Christ Jesus."
(Philippians 4: 6 & 7)

"It begins with those powerful words "be anxious for nothing." I can't tell you how difficult it is for me to live by those words. They are the most difficult commands or words to follow there is."

Give all your worries and cares to God,
for he cares about what happens to you. 1 Peter 5:7

It's interesting when you study anxiety.

  • 40% of all people who have anxiety is related to events that will never happen.
  • 30% of all our anxiety is regarding situations in the past that cannot be changed.
  • 12% percent is related to criticism or gossip, which is mostly untrue.
  • 10% is about health, which gets worse with added stress and anxiety.
  • 8% of anxiety is related to real problems that we face.
  • That means 92% of the anxiety we feel can surely be cured.

Oh Lord, we need Your touch today. Oh Lord, we need Your love today. Oh Lord, we thank You for sending a garrison of angels to guard our hearts and our minds in Jesus Christ. Lord, give us the strength to be mindful of Your words and to be anxious for nothing; but in everything by prayer and petition and thanksgiving, come and allow Your peace to fill our hearts and our minds. We love You Lord, Amen.

Happy Sabbath; Happy Indian Summer!


Saturday, 20 October 2007


Ten Guidelines From God

Effective Immediately, please be aware that there are changes YOU need to make in YOUR life.

These changes need to be completed in order that I may fulfill My promises to you to grant you peace, joy and happiness in this life.

I apologize for any inconvenience, but after all that I am doing, this seems very little to ask of you.

Please, follow these 10 guidelines

1. QUIT WORRYING: Life has dealt you a blow and all you do is sit and worry. Have you forgotten that I am here to take all your burdens and carry them for you? Or do you just enjoy fretting over every little thing that comes your way?

2. PUT IT ON THE LIST: Something needs done or taken care of. Put it on the list. No, not YOUR list. Put it on MY to-do-list. Let ME be the one to take care of the problem. I can't help you until you turn it over to Me. And although My to-do-list is long, I am after all... God. I can take care of anything you put into My hands. In fact, if the truth were ever really known, I take care of a lot of things for you that you never even realize.

3. TRUST ME: Once you've given your burdens to Me, quit trying to take them back. Trust in Me. Have the faith that I will take care of all your needs, your problems and your trials. Problems with the kids? Put them on My list. Problem with finances? Put it on My list. Problems with your emotional roller coaster? For My sake, put it on My list. I want to help you. All you have to do is ask.

4. LEAVE IT ALONE: Don't wake up one morning and say, "Well, I'm feeling much stronger now, I think I can handle it from here." Why do you think you are feeling stronger now? It's simple. You gave Me your burdens and I'm taking care of them. I also renew your strength and cover you in my peace. Don't you know that if I give you these problems back, you will be right back where you started? Leave them with Me and forget about them. Just let Me do my job.

5. TALK TO ME: I want you to forget a lot of things. Forget what was making you crazy. Forget the worry and the fretting because you know I'm in control. But there's one thing I pray you never forget. Please, don't forget to talk to Me - OFTEN! I love YOU! I want to hear your voice. I want you to include Me in on the things going on in your life. I want to hear you talk about your friends and family. Prayer is simply you having a conversation with Me. I want to be your dearest friend.

6. HAVE FAITH: I see a lot of things from up here that you can't see from where you are. Have faith in Me that I know what I'm doing. Trust Me; you wouldn't want the view from My eyes. I will continue to care for you, watch over you, and meet your needs. You only have to trust Me. Although I have a much he bigger task than you, it seems as if you have so much trouble just doing your simple part. How hard can trust be?

7. SHARE: You were taught to share when you were only two years old. When did you forget? That rule still applies. Share with those who are less fortunate than you. Share your joy with those who need encouragement. Share your laughter with those who haven't heard any in such a long time. Share your tears with those who have forgotten how to cry. Share your faith with those who have none.

8. BE PATIENT: I managed to fix it so in just one lifetime you could have so many diverse experiences. You grow from a child to an adult, have children, change jobs many times, learn many trades, travel to so many places, meet thousands of people, and experience so much. How can you be so impatient then when it takes Me a little longer than you expect to handle something on My to-do-list? Trust in My timing, for My timing is perfect. Just because I created the entire universe in only six days, everyone thinks I should always rush, rush, rush.

9. BE KIND: Be kind to others, for I love them just as much as I love you. They may not dress like you, or talk like you, or live the same way you do, but I still love you all. Please try to get along, for My sake. I created each of you different in some way. It would be too boring if you were all identical. Please, know I love each of your differences.

10. LOVE YOURSELF: As much as I love you, how can you not love yourself? You were created by me for one reason only -- to be loved, and to love in return. I am a God of Love. Love Me. Love your neighbors. But also love yourself. It makes My heart ache when I see you so angry with yourself when things go wrong. You are very precious to me. Don't ever forget......

Note: I received this from a friend and I have no idea who wrote it, but I was so touched by it, that I had to share it with you. I hope that you will be blessed by it and will share it with others.

Touch someone with your love.

Rather than focus upon the thorns of life,
smell the roses and count your blessings!

Monday, 15 October 2007

Today was like a gift!!!

I went out of town to my family Dr. He only works a few afternoons a month, so I can only see him about every 3 months. He is recovering from mouth cancer, where they removed half his tongue, and replaced one of his jaws with titanium. Its hard to understand him when he speaks, but you adapt to his "accent" like you would with every other accent.
I explained to him about the oral surgery and the complications and that I am still hurting and sick from it. He took a blood test, and found that the infection is still all throughout my body. I asked him for a pain shot, and he said he didn't dare even break my skin with a shot, or it would get infected because of the amount of infection in my body.
He insisted that I increase my pain medicine. He said that bone pain and nerve pain are the worst pains on earth, and I have them both, and if my body is busy fighting the pain, it can't fight the infection. I also got super strong antibiotics, and since he has had horrible mouth/jaw pain, he was VERY good to me!
I am sure that the pain felt worse when I knew that no matter how bad it got, I could not get medical help for it, and now that I know that I CAN get help if I drive to the other city, it eases the pain some.
Night before last, I said some things to my hubby that hurt his feelings. I was expressing my fears by saying that I didn't feel very loved at the moment. He took it as an insult and was very hurt and angry. That turned into a very emotionally painful couple of days, and I wasn't even sure if he would forgive me for it. We talked things out just as I was leaving to go out of town, so it has been a wonderful day. Its also so pretty outside, our roses are blooming again! Mid October and our flowers are blooming in Canada! Unheard of! I LOVE IT! Its so pretty outside, smells so fresh, not too hot or too cold, I would love it to stay this way all winter. I could really use more good days like this. I hope I can teach myself to make EVERY day a good, beautiful day.

When you want to speed up heaven. (and more great articles)

I found an  amazing website for people with chronic illness. These are Christian oriented articles by Lisa Copen, my fibro group founder, and founder of RestMinistries. Check out all the other great articles on the left side of the page of these articles. Even though they are Christian articles, there is a lot of good information in each article that would help even non-Christians. Look around the whole Restministries site. It is amazing all that is offered there.

When you want to speed up heaven. http://www.restministries.org/art-spbelieve.htm

Being Normal (A Poem)
6 reasons not to worry
God doesn't waste illness
Finding purpose in the pain
10 Choices You Must Make to Live Successfully with Chronic Illness
Why should we accept our illness?
What a gold mine!!!

Bone Infection

I thought I should be able to chew even soft things by now. It has been 10 days. I called the dentist, who told me that bone infections are very difficult to get rid of, sometimes it takes years to get rid of them. I just sighed. It sure seems to pour all at once. The heart problem, then oxygen, then being told I couldn't get medical treatment anymore, then jaw infection/cracked jaw with extraction, with pain that not even morphine is taking care of. I can't eat or sleep much, also things needed for healing, so that is delaying healing also. If bone infections can stay for years, I am HOPING that maybe part of my worsening health has been due to the bone infection, and that when we get the infection cleared up, maybe I will feel better than I have in a long time! Maybe that has been the source of my face pain all these years, and maybe it will go away! Well I can hope, anyway. I was hoping to lose some weight from not eating, but no such luck, because again my body thinks its starving so it won't burn any fat or calories. I'm really really tired of this. I think that knowing that I can't get medical help has made the pain worse. When I knew that I could get help if it got too bad, the pain seemed easier to bear. I'll go to my family Dr. tomorrow to see if there's anything he can/will do that the specialist refused to do.

Saturday, 13 October 2007

The Worst Days--when I'm out of spoons.

I still have no idea how to make this blog separate the lines and the paragraphs and to start a new line. Even when I use "view blog" to see how it will look before I publish it onto the blog, it looks fine there, but not when it's published, so I guess what I will have to do to start a new line or paragraph is to change colors.

These letters between a friend and I will explain why I haven't blogged for a while.

Dear Bluebirdy of Happiness./

How is the mouth. Im thinking about you. Can't seem to sleep tonight and hope this is not a preview of things to come. I've always slept well and don't wishto give this blessing up. I just found out that mybest friends grandaughter has return cancer for the second time in as many years and she is 27. It is just too hard sometimes,

Love, Ç./

Hi Sis;/
I guess we are both struggling. I don't want to get chastised publicly for my scary thinking, so I have just stayed silent. I am so sorry about your best friends granddaughter. Cancer is a plague, like the black plague, and I seem to hear about another victim every few days. I chose the name "bluebirdy" hoping it would help me become the happy person I was 10 years ago, but its a constant struggle. I have been in such horrible pain, not eating, not sleeping, even morphine not getting the pain, missing Canadian thanksgiving, unable to even visit Dad, for a long time now. I am getting enough liquids, though. I sleep about 3 to 5 hours a night usually, its been that way all my adult life, so I understand your insomnia. I was so miserable physically and emotionally this week, I kept thinking of
Rev. 9:6 "And in those days shall men seek death, and shall not find it; and shall desire to die, and death shall flee from them." /
I can't help wondering if it would be harder to be with someone right now or easier. Been thinking also that if it is my time to go, maybe I failed in what I was sent here to do, so I have been making myself miserable with thoughts like that, beating myself up with worse things than I would say to my worst enemy. When you are in level 10+ pain, its almost impossible to think rationally and change your thinking. Even Job in the Bible only suffered 5 months. Lupus decided to start a riot in my body because of the trauma of oral surgery and the infection that went into my system, so I am as sick as if I had been poisoned. You are the only person on earth I have told this to so far, because I know you have like that when severely ill too, in fact, just last week! To anyone else, I would be seen as a whining exaggerator...because they can't imagine a person can continue to survive pain that morphine doesn't take care of. /
I'm SOOOO happy you wrote. I have felt especially alone, because if I can't write something good, I'd rather not write on my blog or to the group , so I just laid here suffering, My voice is gone so I couldn't even talk to my husband. He would come online but I could only see clearly for a few minutes, then I had to quit. Part of me misses him so much, but the other part of me knows I CAN NOT take on a man as helpless as a child in this new world. I've been bawling for days, like I'm having a nervous breakdown./
Ok enough, I'm sorry, but thanks for letting me vent. You are so dear to me. You are in my thoughts and prayers daily.
Love, S /

Hi Sheila,/
I'm writing immediately because I do understand although I'm not in any real pain, ( Well, my feet and my head, but I've gotten used to those). Somedays after chemo I feel so badly that I, too, think that I don't want to live like this, it passes though, even though I don't. I want your pain to stop, has it subsided? There are few things worse than mouth trauma. S, I think you SHOULD post your letters like this, How are our care givers to know that some days there are NO spoons at all and it really sucks. I love you. Thanks for calling me SIS as I am an only child. I have trouble sitting at the computer for long, soI'll close now. I'm good for an e-mail ANYTIME, GOOD OR BAD./


Tuesday, 9 October 2007

Awaiting Christ's Return

Thankyou to whoever the artist is for this and all the pictures that I use. I use public domain pictures so I won't break copyright laws. Being a writer, I am sensitive to having work stolen. I wish I knew the artists names, to give them credit for such beauty.

Monday, 8 October 2007

One of those days

I hate days like this when the pain is so bad almost the only thing I can think is "oh Father in heaven make it stop" over and over. The area with the stitches in my mouth turned into one huge canker, lupus has attacked the area causing fever, pain, swelling, throbbing. My inside cheek is stitched to my gums, to graft some skin onto the gum, its on my damaged nerve on my face, causing trigeminal neuralgia attack (also called the suicide disease). I hurt too much to even get to the emergency room, so I will take any pain meds I have here and cold pack and just pray. Hard to think positively through this kind of pain, but this too shall pass. Wow, this took hours to type, kept stopping for pain. This is Canadian Thanksgiving. Turkey smells great but no one can eat it, it was silly for mom to make it. I guess we can freeze the meat for later. I don't know when I'll get strength to cut the meat off the bird.

Bye for now.


Saturday, 6 October 2007

We don't get the rainbow without going through the rain!

Friday, 5 October 2007


Hello all;
     My email program once again erased over 500 of my MOST IMPORTANT emails. Things I needed to reply to, emails with pictures, my bills, my transaction receipts, things I needed to do, advice from others that have become so precious to me, my daily newsletters, my new website membership codes, EVERYTHING---GONE! So if you have sent a letter to me in the past couple of months, that you are waiting for a reply about, I'm sorry, it's gone. Also today I had a big physical setback, I'm too tired to retype it, so if you are interested, its the next blog entry below this one.
    Oh gosh I am praying that losing all those emails and documents will not cause me too many problems in the near future. Anyway, hope you are well. I am doing GREAT SPIRITUALLY AND EMOTIONALLY! Better than ever! It has been the greatest gift that Heavenly Father could give me.

Miss Complications

That's my new nickname at the dentist office. "Miss Complications". He has NEVER treated someone who has so many complications. He agrees with me when I say I am an alien.
I went in to get a few fillings, and they finished 2 of the fillings, started on the third, and found it went to the root, but they couldn't do a root canal because the roots were crooked and strongly attached to the bone, so they tried to pull the tooth, and the dentist is a lady and I'm sure she doesn't even weigh 100 pounds, but she sure had to stand up and get leverage to get that thing out. When she did, pus came out of my jaw, so that tooth and my jaw were infected and I didn't even know it, which weakened the jawbone, so she broke my jaw (cracked,not a bad break) when getting the tooth out. She said I will probably get more swollen, bruised, more pain and more sick in the next few days because that infection has now been released into my system. So they gave me a really strong antibiotic and strong pain meds. Its thanksgiving here in Canada this weekend, but since we are sick, we are not cooking or having a big dinner until the 10th when we go to the Nursing home to share dinner with my Dad, so that's a blessing, and you know, I AM SO VERY VERY THANKFUL that I live in the days of anesthetic. I was praying that she could get it out easily and remembering horror stories of dentists before there was Novocain, and thought that what I went through was not bad at all compared to what they went through. Now I have no back teeth, so I have to have a partial denture made for the back upper and bottom. Diabetes and lupus REALLY destroy the teeth, even if you brush 3 times a day. That's all I needed, was more pain, and now sepsis, infection in my blood stream, right ? Life is never boring, anyway! The stitches come out in a week. Maybe I'll lose a pound or 2 by only having liquids for that time, but maybe not, since I eat as little as a bird anyway. It would be nice for something good to come out of this.
Smile, it makes things better.
Blessings, Sheila

Just a couple of thoughts

"For I know the plans I have for you," declares the LORD,
"plans to prosper you and not to harm you, plans to give you
hope and a future. " Jer. 29:11.

And the day came when the risk it took to remain tight inside the bud was more painful than the risk it took to blossom.
~Anais Nin



The Spoon Theory

Did you ever read THE SPOON THEORY? It has made it so much easier for me to understand myself and for me to tell others how my life works, and how all of us struggle with invisible chronic illness. You can read it here (short story). http://www.butyoudontlooksick.com/the_spoon_theory/

That whole website of "But you don't look sick" is really great! Some people have told me they couldn't open the file, so here it is:

The Spoon Theory
My best friend and I were in the restaurant, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner (restaurant) while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me what it felt like to have Lupus and be sick. I was shocked, not only because she asked the unexpected question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, every decision has to be carefully made, and that Lupus had changed me from the person I once was. How do I explain the emotions a sick person goes through with clarity? I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking, “If I don’t try to explain this, how could I ever expect her to understand? If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.”

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; then I grabbed spoons off of the other tables. I looked at her in the eyes and said, “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. I have to choose what size I will wear today, because some days I am swollen and some clothes or shoes don’t fit. I have to have at least 2 sizes of clothes to choose from. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she didn’t even get to work yet in this pretend game, and she was left with 6 only spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone, and she will be laying in weakness and pain, unable to think or do anything else.. Sometimes you can borrow tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseated, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or bath, or iron clothes, or do paperwork, but you can’t do it all.
I rarely see her emotional, so when I saw her get upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. The healthy have the beautiful ability to just do what needs doing without thinking about it. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
Christine Miserandino http://www.butyoudontlooksick.com/

Blessings, Bluebirdy
Only exceptional people get lupus or fibro. Average people could not handle it. -Dr. P. Knibbe, Rheumatologist
"For I know the plans I have for you," declares the LORD,
"plans to prosper you and not to harm you, plans to give you
hope and a future. " Jer. 29:11.

Thursday, 4 October 2007

A little gift for you

Do you remember when you were a child, laying on the grass, finding a patch of shamrocks/ 3 leaf clovers, looking through it for hours for a 4 leaf one for good luck? Here's a cute little game to help you veg-out when you need a break. Look for the 4-leaf clovers for good luck. There are 7 in total. click on them when you find them.

How I Am Finding Contentment

(I wish I could figure out how to make the new lines, paragraphs, separated sections show up in this blog, instead of all running together. Even the "preview" doesn't show the same way it ends up posting. I think what I have to do is to type ** to indicate where a new line or paragraph starts. )

**A few people are asking how I got that contentment I blogged about earlier, so here's how:a very short summary of what I've learned. Maybe later I can include the books and tapes that got me to this point over the past 3 months.

**As for the contentment, How I wish I could magically send it as an attachment to an email. It's not yet a permanent condition. It took a lot of study about how to stop worrying, and I am still practicing. Old habits die hard, but I am hoping I can keep practicing what I learned whenever the contentment starts to leave me. This article (you might have been in the hospital when I sent it) helped sum up a lot of what I learned about not worrying. http://bluebirdyliving.blogspot.com/2007_09_01_archive.html
I also found my 2 biggest tricks are:

**1) I decide if its something I can control or not. If not, I ask God to please take it from me because I can't do anything; and if I can control it, I ask Him to help me make the right decision, and to give me the strength to do what I need to do with it, and

** 2) I have to keep reminding myself to live in the moment. Are things fine NOW? Enjoy NOW. I was so worried about the future and about everything else that I was not enjoying anything in life. I ask "Is what I am worrying about something that might not even happen and/or in the future?" What a shame to suffer for it twice, once now, before it even happens (when it might not even happen), and then again in the future if it does happen. Even if you are worrying about something that WILL happen, "will worrying add one moment to the length of your life" (as Jesus said). Does worrying solve anything? It just makes you suffer, so I have to practice pushing those worrying thoughts out of my mind and replacing them with something else.

**One more thing...I stopped fighting/denying my situation, started accepting, and trying to learn what I can do to make life better now that I have accepted the way things really are. I also decided I have to cut out all negative media/music/books, etc. that drains my energy.

**During an NDE, I learned that I am much harder on myself than even God is, and that He expects much less of me than the world and my religion does. I have to remind myself of that often, so I am learning to quit being mean to myself for not accomplishing much.

**I hope something I have learned will help someone else, even if for a few moments a day!
**Blessings, Bluebirdy

Tuesday, 2 October 2007

Sharing My Blessings

Wow!---so THIS is what contentment feels like? I have not felt this ....maybe years. I can't even remember. Even with all my faith and love for God and constant reading of uplifting material, I couldn't shake being hyperactive and worried inside all the time. WHAT A GIFT AND BLESSING THIS IS!I'm still really weak and have pain...but I'm CONTENT! It's interesting for me to discover that I can handle pain better and push myself through the pain more. I PRAY THAT ALL OF YOU CAN FEEL THIS FEELING...PERMANENTLY!!!
Blessings, Bluebirdy

new word for the day-FRUSTIPATION!!

Ok what's with this blogger? I spent HOURS separating lines, paragraphs etc, in the previous blog, I even used "preview" to see how it would look when it was published. It looked fine, with lines separating sections and paragraphs, and now when its published, all the lines that separated sections and paragraphs are all run together!!! FRUSTIPATING! Also my people's comments do not show up, even though my settings say to "show" the comments. Other problems but I guess it will take a lot of time to learn how to run this thing properly.

Monday, 1 October 2007


.....of the Canadian Health System. I am happier to seek remedies in the world of alternative medicine and natural supplements, as I have since I was first told "there is nothing we can do for you" 30+ years ago. I only need the medical system for emergencies. I have bad reactions to the prescriptions anyway, so there is nothing they can offer me. Take away the little white prescription pad of a Dr. and he will be helpless. They don't do many procedures anymore, the nurses do. I guess surgeons can do more, and those who deliver babies and set bones and stitch up cuts are useful, but those who can't do those things are just very educated pharmacists, useless without toxic medicines to pass out. It is forbidden to speak of prevention, or of natural remedies. When the American Medical Association was founded in 1900, they all made a vow to cast out all natural healer and herbalists as quacks, and to never mention such remedies that were no more than old wives tales. In just over 100 years, they have become greedy and corrupt, and those who go in wanting to serve mankind and heal them, are soon taught the corrupt ways of their peers, or pushed out of their secret society. it is rare to find a real "healer", one who wants the patient to feel better and is willing to find the source of the disease and the source of the remedy, even if it is natural. natural medicine has been here since mankind began. Yet now that it has been banned, there has never been such a high percentage of sick people. Modern medicine is a self perpetuating business. 40% of people in the hospital are there due to the side effects of medicines. There is a book I read about 30 years ago called "The medical heretic" and I guess after being cast out of the medical system this time because of corruption and greed, I will now call myself a medical heretic. My mother and I are blessed to have family doctors who agree with us, and offer us natural alternatives, and plan to retire soon from the secret combinations and private religion of modern medicine.

The Summary of just a few months of medical Insanity.
Follow this thread of emails to know the insanity of the local medical system. I don't know if all of Canada is like this.

First one of my support groups was sent this article:

Is hospice really about dying? By Kristopher Stice - Special to the Argus Observer Sunday, September 30, 2007 12:34 AM PDT

Hello all!
My name is Kristopher Stice. I am the director of Human Resources for Heart ‘n Home Hospice & Palliative Care, LLC. I’ve been with Heart ‘n Home since its inception in March of 2004. Each month I will be writing this column with the intent of informing you, the public, of hospice and its benefits.

Hospice is a set of services that we all may need someday — if not for ourselves, for our parents. While death is not optional for any of us, we do have choices about the services we use at the end of life. Hospice is, without a doubt, the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

Yet, despite its many advantages, hospice is still a mystery to most Americans, 25 years after its introduction to this country.

That hospice remains a mystery is due in part to our society’s resistance to discuss matters related to death. We, as Americans, seem to think that we are invincible; death is not an option. A National Hospice Foundation research on end-of-life care found this manner of thinking to be accurate. The study revealed that Americans are more willing to talk about safe sex and drugs with their children than to discuss end-of-life care with their terminally ill parents. It is this lack of communication that leaves people unprepared for the physical, spiritual and emotional strains caused by terminal illnesses.

The good news is hospice can help. We are specialists in end-of-life care. Hospice providers are committed to the idea that hospice isn’t about dying; it’s about living and making each journey the best it can be. It’s about living life to its fullest, up to the final moment. It’s about receiving comfort and care. It’s about surrounding yourself and your loved ones with medical, emotional and spiritual support.

Hospice doesn’t give you the power to shorten or prolong life, just the power to live it as you choose, to be at home, if you wish, to be pain-free, to be comforted and cared for. This is the essence of what hospice is. This is what we want people to understand. And this is why we love what we do.

You know, a hospice patient once grabbed a nurse by the cheek and said, “Don’t you ever forget what a privilege it is to walk someone to the gates of eternity. It is a privilege not a right.” This patient couldn’t have been more precise. It is a privilege and a great honor to serve these people in their homes wherever that may be.

It is for this reason I’m writing this column, to help everyone understand hospice. If you need the help, please get it. It will be one of the best decisions you could ever make for you and your loved one.

If you have any questions or concerns please feel free to call me or the staff at Heart ‘n Home Hospice & Palliative Care, LLC, at our Fruitland office, (208) 452-2663, Baker City office, (541) 524-7688, Caldwell office, (208) 454-0262, or Emmett office, (208) 365-2099. You can e-mail me at
kstice@gohospice.com, or visit National Hospice & Palliative Care Organization Web site: www.nhpco.org

Then G. from the group replied:

I've been involved recently with hospice twice, once in-home and once in-hospital, so I've been exposed to both types of the services they offer.
I am on the fence regarding hospice.
The theory is, of course, excellent. However, in practice........I agree that most folks don't understand what is involved here. But we part on much of what that disagreement entails. I cannot speak for how hospice works in other areas, but again, the two experiences I've had have been in vastly different areas. The one was here in our rural hometown, the other was in a very urban setting. They were both the same, however, in how rarely the nurses are on-site. The actual care was left to either the "regular" staff nurses (as in the hospital with my dad) or the home care agency folks (non-nurses) that had been tending to my aunt's needs prior to her going into hospice. The BEST thing without a doubt is the painkilling drugs and how there is no hassle with the availability of these. However, if people think that hospice nurses are on-hand throughout the experience, that is not the case. The brunt of the care is left to others. Hospice makes arrangements for things that are needed, such as the meds, hospital bed, things like that, but they are a phone call away..........not on-site. I know I'm not the only one to have had somewhat differing illusions that I found were inaccurate when reality hit. I'm not saying that it's realistic to expect hospice to provide a nurse 'round-the-clock, but that seems to be the impression that they give.....
I'd be curious to hear of others' experiences.....

Then I replied to the group and to G.:

Hi G.,
I had a bad experience lately with my local hospice and I am wondering if these same rules apply to every hospice. It seems as if a person has cancer, he can get hospice, but if he is dying of any other condition, he can't.

When I was told a few months ago that I probably have less than a year to live,(due to end stage lupus causing my organs to shut down), I started calling every agency in town to ask questions and to try to deal with all the confusing ideas swimming in my head. No one could help me. I called the hospice, and asked if there was anyone there I could even talk to after being told this news. I didn't know whether to tell my family or not, because there are 4 terminally ill people in this house and I didn't want to add to their problems. I was told that I couldn't even speak to someone from hospice until I got a Doctor's referral saying I have less than 6 months to live. I told them that my Dr. said he could never tell a patient with that much exactness how long they have to live, because each person is different, and a lot of it depends on God, not on what the body is doing. So first rule is that you don't get in if your Dr. doesn't say you have less than 6 months. The second rule they have, is that if you live longer than 6 months from the time you were signed up, you get dropped from the program at the end of that 6 months. So if I were to live 6 months and 2 weeks, the last 2 weeks I would be on my own when I need help the most. Is that a rule of all hospices? I thought it was horrid to think that suddenly they could take away my oxygen and pain relief etc. on the day that my 6 months runs out. It would make people consider suicide as that 6 month day approaches !

Calling home care agencies has been a joke. The other agency had stupid rules. For example, they would sweep, mop, vacuum, dust, but would not pick up anything that needed to be put away before dusting or vacuuming. They would dust or vacuum around them. If I had the strength to pick up all the things before dusting or vacuuming, I would not need to hire someone to dust or vacuum! The other rule was for the medical home care, I can't get that until I need help to bath or dress or be fed or take my meds, but they will not help do any laundry or iron any clothes to put on me when I need to get dressed. If I had the strength to do my laundry and ironing, I would not need to have someone dress me! They are not even allowed to empty a garbage or make a bed. Sounds like a dang easy job for $25 an hour. Even people with health problems or not able to speak English could do that very easy job and wow, maybe if I get feeling a bit better, I will apply there myself! Of course I know that I would wear myself out doing as much as possible for the clients. That's just how I think. I love to help.

I'm really glad you posted your letter, because I DID think hospice offered more help than you point out. I am writing to the author of that article to find out some hospice laws and ask him if our hospice is out of line.

G's reply:


This is utterly horrible. First of all, hospice should pertain to ANY terminally ill patient, and I don't even believe you have to actually have an appointment with death, necessarily. You certainly should not need to have a particular timetable!! That's beyond absurd.

And as you say, rarely any more does a doctor give a specific timeline. They know better. That hospice sounds like it needs a kick in the head. I do believe there must be national guidelines, they can't be making this up as they go along. It needs further investigation. What area are you in?

And, those home care agencies, they sound like a bad joke as well. You're right, you may as well be doing this stuff yourself, if you have to supplement what they are "allowed" to do. And for 25 bucks an hour?? I'll come and do it......yes, very easy money for the little work they are ASKED to do. It's nuts. I really feel for you, and I'm sure you're not the only one who can tell this story. The homecare my aunt had, while individually there were a couple of really excellent ladies, basically was the same. At one point, the lack of housekeeping was so awful, they had to fumigate the apartment (and my aunt was wealthy, lived on the 30th floor of a high-rise), it was dreadful. That particular "caregiver" finally was fired, but I'm sure this kind of thing runs rampant.

Your complaints need to be aired publicly. Try contacting your local legislature and also there should be what's known as an ombudsman who takes care of this kind of thing. They also cover nursing homes. Again, where are you?
People in your situation do not need to have to deal with this!!
Love, G.

my reply:

I'm in Canada, I don't know if every province has these rules but I do know our province has the shortest waiting lists and the most medical employees, so less shortage of help.

This whole time since I have been told I have about a year to live, I have found that it is very hard work to be sick, to do all the research, make all the phone calls, go to all the tests (and treatments if they are offered), to fight every door that has been closed, etc.

I feel like I am walking through a maze from Alice in Wonderland with such absurd rules and illegal, unethical rules, that I am just worn out. I have an Internet friend who works for a government representative, and they pretty much said "too bad, there's a million other people in the same situation as you and we can't save them all and we can't change all the rules by ourselves." From what she could find from some digging, she figured that if you want to find the answer to why there was such a stupid rule made, follow the dollar signs. You just follow the trail to who was paid off in order to pass such a rule or law, or someone who decided it would save a dollar a day or some minuscule amount. Yeah its absurd that there have been 4 critically ill people in this house for 10 years that can't get help, and when we did tall to lawyers and legislators, the College of Physicians and Surgeons (The governing body for the medical system, where you report neglect and abuse) in the past AND EVEN A TV STATION, who called the agencies involved, the agencies were saying "What are you talking about? There are many times this family got treated medically, and many agencies that offered to help them with housekeeping and home care, but THEY turned us away! " And that's true. I don't have the strength to clean BEFORE they come to vacuum and mop. I don't have the energy to do the laundry BEFORE they come to dress me and nag me into the bathtub, and I didn't want to pay for them to come here at THEIR convenience to not do what I need, when I could maybe find some private person to hire who WOULD do the things I need done. If I had a husband or even 2 or 3 friends locally, I might have enough of a support system to fight with, but I don't have that, and I don't have the physical strength to fight, even though my spirit is willing, my flesh is too week to do publicity and go to appointments and court and hearings etc. etc. etc...so I am just at the point of doing all I can to improve my quality of life, attitude, improve my health, and live as comfortably and happily as possible for as long as possible. I believe there is a reason for everything, and there must be a reason that I was suddenly forced to move to Canada from my US home for 20 years, and then have my health decline here, be neglected here, and eventually die here. Maybe its for no other reason that all those who died innocently due to ridiculous greed and corruption will be justified by the leaders having to pay for their crimes sometime in the next life. Maybe its because it is part of God's plan for my life that I was only supposed to live to my mid 40s, and in order to facilitate my demise in a natural manner, maybe I had to leave the USA where I WOULD get treatment, even though it did bankrupt me. I don't know. I guess in the next world we will find out the reason for all these things. Thanks for your kind support and compassionate heart!!!


Happy Oct. 1!

It's October already. Got to start on Christmas stuff cuz I can do so little at a time. It's only fair that I report the good as well as the bad. Except for severe pain and weakness, things have been very peaceful since my last post. I would rather deal with physical pain than emotional pain anytime. I had a long list of things that I could not stop worrying about, and now I am trying to retain more of what I learn and read, to remember the comfort I find in the scriptures and from Internet friends and from the many books I have bought to try to teach myself to be peaceful. The only thing I am being bothered about is that I wish I could push myself more through the pain. I can push myself through pain that is on levels 1 to 7 on a scale of 1 to 10, but once the pain hits 8-10, I can't push myself through that to keep doing my duties, and that's what I've been living with, but there is SO much that needs to be done, and I SHOULD be with my Dad once every day, but I can't. And he forgets how people live on the outside world, so he doesn't understand why we can't be with him 24 hours a day. We get so sad for his loneliness and confusion and sadness. I just do a LOT of praying for him,hoping that angels will surround him and comfort him. He has been such a precious father. I don't know of any better fathers. He was always so generous and patient, and now I wish I could give to him all the time and patience and generosity he gave to me.
I've been dreaming a lot about my children lately, feeling bad that I can't be a mom/grandma to them and the kids. Last night I dreamed the kids were injured and needed to go to the hospital but I couldn't help them. I imagine that is the feeling I will have when my husband lives here and needs me to do something for him when I can't . I am so scared I will even resent him and God for putting me in a position that is beyond my abilities. OK got to back up. Got to stop worrying about that, and worry about things as they happen. IF he gets a visa we will deal with those things as they happen. No use suffering twice for them,once now, and then again when they happen. Also worrying makes lupus worse, so I have to keep practicing peace, and practicing the skill of not worrying. God has always prepared me for things before they happened (except the divorce and losing touch with my kids), and has helped me develop skills for circumstances that I did not have before. How do I explain it? When something bad happens, it seems like I just recently learned a skill to help me through that circumstance, and if it had happened a month earlier, I would not have been prepared for it, so I have to believe that either God will lighten my load or strengthen my back for whatever comes up. I have to let God carry my load, since I am not able. I know I still have to PLAN for the future, but planning doesn't mean worrying. It has been nice to have a few days where a crisis didn't come up. For a LONG time, it seemed that I was getting a crisis daily with no break. So now I am just reading these amazing books and hoping to remember what I learn. My memory is bad since the bad pain started, but I hear that's normal. It helps because I forget the pain that I had a few days ago, but is frustrating for other things I forget.
I want to get my husband out of that terrible dangerous war zone, and the pollution is making him sick quite often too. If he can't come here, I will still try to get him a visa to another country. I am now trying to find out info about other countries he could go to until he gets a Canadian visa.
I wore myself out. Gosh if I can't even type for a few minutes without being worn out, how can I care for him? (OH STOP IT ! HABITS ARE SO HARD TO BREAK!) Still working on it.

Newer Posts Older Posts Home