Sunday, 9 December 2007
Sunday, 2 September 2007
Filling in the blanks ABOUT ME
I'm really struggling, wondering if I can save myself on my own, or if I would have a better chance of surviving if I had friends who would visit, or my companion here, but now that I have written it out, I realize that is wasting my energy to worry about, because I can't bring my companion to me or the friends. Its all in the hands of God's will, so I WILL be doing this on my own, whether I like it or not, and if I can't be strong enough to save myself, (even if I try until I bleed from every pore) then I can't, and that is God's will also. And if I CAN survive alone all this pain and the emotions and overwhelming feelings that a person goes through at the end of their life, then I will thank God for all the assistance that He gave me to do that. I think I would feel worse with someone else here, because I would be thinking that I am making them suffer also, so maybe God knows that would be more of a burden to me, to know that I am making someone else suffer, so that's why I am doing it alone. I never experienced loneliness in the 10 years I have been alone in this bedroom. I had my computer friends and savored my solitude, after being in a family (ex husband's) where I was forced to help with 5 day long family parties, where family from all over many states would show up and stay at the house and play games and eat and visit and sleep all in different shifts, and I had to stay and be the other hostess no matter how sick I was, and I did it until I never wanted to entertain again. Ok, so it helps to write down your thoughts...good thing to learn. So this is really hard, especially at night, and especially when I can't even get myself a drink, because dehydration makes your body and brain start to shut down, so I need to find a way to make it easier.
*****NEW POST******
Someone who just wrote pointed out that I haven't supplied you with enough information to put the puzzle pieces together. Let me fill that in for you. I live in Canada, and married a man from Swat in the Himalayan mountains. Its also where both 'Lost Horizon" movies were shot, and is the 'Shangri-La' the Asians speak of. Its where Buddha was born. We have been running a business online for 2 years of translating and proofreading to earn money for immigration. I have been with him for 4-8 hours a day on webcam for 4+ years and I know about 10 other people in his town that all know and respect him. I met him through one of these other friends online. I am in the end stages of lupus, with heart failure and a few weeks ago was told that if I didn't get some treatment soon, I would be too sick for any kind of treatment. The Dr. told me I might have to wait 6-12 months for testing and treatment. I lived in the USA for 20 years, and there I would be treated within 24 hours. There have been an eerie amount of delays with the immigration, but those seem inspired, because I cannot take care of him and help him adapt to this society when I can't even get myself a sandwich. I can't even keep him fed unless I get well, and since the medical world gave up on my lupus years ago, all my treatments except for unbearable pain, are natural. I am also going through Rapid Eye Technique sessions and energetic healing sessions, since the medical system seems to be so lacking with chronic disease. Natural medicine has been here since man first walked the earth. Modern medicine is only 100 years old and is good for many things but has almost destroyed itself with greed. I decided to learn a bit of "The secret", energetic healing, changing the way you think and speak, etc. in hopes that I can start a whole new life. I have a degree in world religions, but my education completely passed over this new enlightened way of thinking, maybe because it can't be classified as a religion. I am Christian, but also have beliefs from every major religion and still enjoy studying them. I have had more than 12 NDEs (Near death experiences), so I am not afraid of dying. In fact, until I started the Rapid Eye Technique, I wanted to die. RET removed that desire and changed it into a desire to start all over and to give to people as much as I possibly can, and to enjoy some things in life. I am bedridden so even going to the park would be enjoying life, I moved to Canada 9 years ago this week but have been too sick to go meet friends. I did meet a few, but was not able to share in the give and take that friendships need to survive, so the friendships didn't survive. I am living with my terminally ill mother (also lupus) and my terminally ill father (just went into a nursing home in March but we cared for him before that) and my terminally ill brother (who got his own apartment and goes to feed dad twice a day). We don't know who will go first. I wish we could all go at once. We are so close, it will be really hard to miss even one of the others...but knowing we will soon all be together is a comfort. It is possible that this threat of me dying is just like all the others, where the Dr. would say "You can't live past 2 more years", then in 2 years I would have a NDE, get sent back to earth, and it would start again, but this time the feeling is completely different. I have enough organ damage now that death is possible.Death itself is easy. Its living alone through this pain and fear and starving that is bugging me. Mom is not well enough to help me. She is living on ensure drinks since I can't cook for us anymore. Just after being told my prognosis, I made it a full time job to find an agency to help my family. I went through them all, no luck. I have had ads up to hire someone for years with no reply. There is a real labor shortage crisis in Canada so they are begging for immigrants to come work here. There is NO REASON my husband should not be allowed in.. There is no security problem or legal problem or anything questionable about him. My husband couldn't bear to see me suffer so much, and loves me so much, he wanted to come here and help my family, but that's not happening either. I guess that's good because it would be awful for him to come here and live with a sick wife, not able to enjoy life or get help to adapt, and then if I died, he's be left in strange country alone. It would be much better if he could come after I could get this heart treatment so I would have a little bit of strength to help him. I feel so bad that I can't be the kind of wife I want to be, the kind he deserves, but I "SERVED" hubby #1 so much that I wore out my body before I was 35, then when I started slowing down, he tossed me out like a used Kleenex. He then married an oriental woman, thinking that was the only way he would get "served" like I served him, but that backfired on him. I am thankful that God got me out of that marriage, because even though I thought I knew what love really was, it was completely different compared to the love I get now, even from 10,000 miles away. If there is such a thing as a twin flame or mirror spirit or soul mate, this man makes me believe there are such things. We are so much in tune with each other, even calling at the same time, saying the same things, knowing what the other is feeling. I want this man despite breaking all the rules of his society and he feels the same. Rules of marrying outside the tribe, color, religion,age group, away from the family, everything. It sounds foolish, and I do fight with my practical side and my desire to be with him, because I know how hard marriage is at the best of times, he doesn't. He's an innocent. Even with the heart condition taken care of, if that would take me back to where I was 4 months ago before the heart problem, then I will only have 4 hours a day of strength, but I still HOPE I can find ways to change that. If I can't, then I feel very sorry for the life my husband will face with a sick, but adoring wife.I am ashamed to complain, because I know things could be worse...but sometimes it really needs to be vocalized that I am struggling and alone and need encouragement, and soon will need a real human local friend or employee to help with living skills. Mom is sick upstairs in her room, I am sick downstairs in my room, and rarely are able to do much for each other. I am SO thankful to be alive in the age of internet so I can reach people even from my bed. People from all over the world. I am a knowledge sponge, so I am learning more from bed than I could if I traveled the world if I were healthy, so this little box is a blessing.
Posted by Bluebirdy at 13:35 0 comments
Labels: chronic illness, divorce, faith, lonliness, lovesickness, lupus, terminal illness, The secret
Thursday, 30 August 2007
Oh Lord make it stop
I am NOT a PollyAnna Most of the time.
I try to act brave and cheerful and positive in emails and around others and on phone calls and in blogs
1) So others don't completely abandon me because they can't stand my negative complaining anymore
2) Because people have enough of their own problems without me adding more of a burden to their life
3) Because I keep getting told this new age stuff of "What you think, is what will happen." I think that movie "The Secret" is DANGEROUS. It blames the person for everything that happens to them, and leaves NO ROOM for the thought that maybe some things were God's will and had a purpose, and no room for having compassion for a suffering person or helping them out, because "They did this to themselves and they have to get themselves out of it and they deserve whatever they get." "The Secret" is a double edged sword. One side of the sword can cut you a new life, new way of looking at things in a positive light, the other side of the sword cuts out the existence of God's power in your life or the thought of compassion for suffering and serving others. I can't believe that people who were born with things, like me and people with cerebral palsy and other horrible diseases "thought" about that and chose that for themselves. What did I do? While in the womb I thought "Yeah I want to be in pain and alone and in a prison of a body for about 70 years or so, and the suffering never go away and no doctor will help or be kind, and your children will not understand and your husband will abandon you as soon as you are no longer able to serve him. Yeah that's what I choose." How stupid is that to teach, but that's what the secret says, that we brought on ourselves everything that we have, and we deserve everything we have, and the way you think can get out out of everything. So they way you think can get Christopher Reeves off a ventilator and get him walking? He certainly tried and had tons of support and thought positive things every moment, but as hard as he tried, he still died. Then his loving, positive, supportive wife died of cancer. Did she want that, to leave her kids alone? Its evil to think that "if you would just do this or that or think differently, you would be well, so if you WANT to be sick, I will leave you alone and let you be sick, until you choose to think differently and heal yourself." Hate days like this with pain and weakness and discouragement.
Posted by Bluebirdy at 12:17 0 comments
Labels: lupus, pain control, prayer, terminal illness
Monday, 27 August 2007
To Be or Not To Be?
I wonder what percentage of people feel like they just want to die, but hide it. I know its got to be at least double of what it was 25 years ago. Ok here's a switch on the track of thought for you. I have thought this same way as you for about 15 years. I am in disabling pain, weakness. I have lost my husband, children, country, home, jobs, ability to work, friends, and ended up in a bedroom in my parents home. I have other overwhelming stress that I mention further on in this post. I wanted to go home to heaven! Then 3 weeks ago I got told that I probably have less than a year to live. I should be happy I am out of this pain wracked, useless, alone body! (Lupus). I should be happy I finished my journey and get to go home early. (mid 40s). After all, that's all I wanted. My heart stopped many times, I had NDEs, got revived, and questioned God for not letting me stay on the other side. I should be happy I will no longer be a burden on my terminally ill mother, father and brother. Daily we all wonder who will die first.) I keep wondering how I will do all I need to do before the end, since I have NO help. People who die with cancer are pampered with help, agencies, hospices, medicines, home care, books, supportive friends and neighbors, but dying with any other disease, you are on your own. I am so much on my own that I don't even have anyone who would come to my funeral...I have been told a dozen times before that I can only live about 2 years in my condition, and I always thought "So what? My heart will stop again, I will have another NDE , I will be sent back to earth again, then they will tell me "2 years" again." I want to add here one thing I learned in those NDEs. WE expect a lot more of ourselves than God expects of us. He expects us to learn to love Him, find a relationship with Him though we can't see Him, and expects us to be good to our fellow man, but not to overdo our limits. He knows we have limitations because He created us the way we are. "Don't expect so much from yourself", is what I was told. But this time of being told I may not live...it feels different. I actually believe the Dr. this time, because I know that I am struggling to even breathe and think and move. Maybe its my rebellion, but I suddenly WANT to get well, to ENJOY some of life, to learn as much as possible before going on to the next stage of our existence, maybe even stick around to see the Lord's second coming! It seems so ironic that when I wanted to die, even when my heart stopped, I was not allowed to die, and now I have a new husband (waiting for his immigration to come through, and now may never be with him, may never experience all my plans and dreams of a new life with him). This time I am on oxygen and have strength to be up less than 5 minutes. I am thankful for even 5 minutes because last week before I got the oxygen, my limit was 10 seconds. Lupus attacks different organs of the body as if they are foreign particles, thinking they are germs or viruses etc. I have had kidney failure, pancreas failure (diabetes), stomach failure (gastroparesis) well just damage to every organ, then it moves on to another organ to cause pain, fatigue, fever, inflammation, weakness. I have had 18 surgeries, many to remove lupus destroyed tissue. I've had just about everything expendable removed, and parts of some organs I really need. Ok so what if hubby can't immigrate? What if I don't feel better after the treatment they offer me? Then I will want to die again, but will I have missed my opportunity to "go home"? Depression is genetic in my family and I have spent my life fighting it with prescriptions, natural meds, alternative medicine, changing the way I am thinking, energy healing, chakra healing, A VERY STRONG FAITH AND COMFORT from my Lord (yes, people with faith get depressed too, there are suicidal people in the Bible) positive thinking, on and on...and you DO get to the point that you think that NOTHING is going to work. One thing I have learned is that I am still here for a reason and I am not going to get out of here until I learn more or finish what I was sent to earth to do.(We ALL have a purpose here , whether we learn what it is or not.) Maybe learning to love life was my major test, and as soon as I learned to appreciate it, then I "graduated" and got told I get to go home from this school called "earth". Is this feeling of wanting to live just a joke that will help me live through the current crisis, and then I will still be sick and alone and useless and in unbearable pain and still want to die? At least if this was cancer, I could KNOW it would end one way or another. Either you are cured or you die. With most chronic illnesses, you don't get that assurance, the pain is WORSE than cancer, and you don't get the medicines or the understanding or the support of any agency or family or friends or work or church. They don't understand an illness that goes on for 20+ years. They stop bringing "get well" cards and visits after 2 weeks! We are the "Pariah" house, no one dares come to see us because thinking of 4 people who are dying makes them too sad. It's as if we have leprosy. My husband loves me so much he wanted to come help me take care of myself and my family, but there have been so many ridiculous delays that are too much to be coincidence, that I think it's too selfish of me to want him with me, if it means I might pass away and he would be left a widower in a new country. It would also be horrible to live with a terminally ill wife and be in a country that he didn't know the culture yet and I can't even give him 3 meals a day. We have fantasized about going to some cruise or resort that supplies all the meals, entertainment, housekeeping, and just love each other until the "end"...but we are not rich...so I want to ask God why he wanted me to be SOOOO alone at the end and why no agency will help anyone in this house and I've even had ads in the papers to hire someone but there is a labor shortage in Canada so there is not enough people willing to work for private people. So do we really want to throw out the baby with the bath water? Do we really want to stop the joy we feel when we see, taste or smell something great, or learn something new, or hear children laugh, or accomplish something new, or overcome a trial, or millions of other things that make up the small joys of life? Or do we just want the pain (mental or physical) to stop? We are only sent to earth once, and if we don't learn from our trials, or do what we came here to do, we will spend eternity in worse depression and torment than we feel temporarily now...so since we are going to stay on this earth until we are finished, and even if we try suicide, or our heart stops, we will still live, unless its God's will that we have finished and can go home...we might as well make each day as enjoyable and bearable as possible. We should seek books or people or websites that can teach us how to enjoy life. The small joys are the only joys we have, but they do add up to lessons and memories and wisdom that we can share with others to help them get through their lives. Since we MUST be here, lets make it as wonderful as possible.Lets go home with lessons learned, knowing we tried our best, even when things were too much to carry, and that we asked the Lord to help us carry our loads, so that we can hear Him say "Well done thou good and faithful servant, enter therein."
Posted by Bluebirdy at 18:01 0 comments
Labels: lupus, terminal illness
How Do You Begin Something As Big As A Blog?
A blog! It seems so big...so...public...so profound...speaking of profound, I am profoundly private, so I am surprised that I have been thinking of a blog for a few weeks instead of just writing privately in a journal.
3 weeks ago I was told that I might not live through the year, so I thought I should share my journey with others, in hopes that I can say something to help someone else. Everyone wants to think that they have done some good in the world, or in someone else's world, before they move on to the next birth, that we call death. I have about 4 hours of strength a day, hence, trying to live a life 4 hours at a time. Last week I only had 10 seconds to be up and around before I would almost collapse. This week I have oxygen, so I can be up for 5 minutes at a time, which is a big difference. I can do a lot, if I do it 5 minutes, then rest, over and over.
I would have started weeks ago, but I had no clue how blogs worked, or where to open an account. My posts will look out of order, because I was trying to get all my posts in order that I had sent to people and they had sent back to me since I started sharing that I might not live, but I have very little strength, so that was taking too long.
Most of my blogs will be letters that I sent to friends, and the touching replies I get back. I am doing it this way because in those letters I share what's going on in my day and how I feel, and I don't have the time to write it out twice.
Some of my blogs will be articles I wrote just for the blog, things I won't tell those close to me in case it would upset them. I also have 150 published magazine articls, so I will put the best of those too.
To be continued. I am out of energy for today. See you tomorrow, my little blog!

Posted by Bluebirdy at 00:18 0 comments
Labels: death, dying, lupus, terminal illness, writing


