Readers: Forgive me if things are repeated. This oxygen makes me an airhead. lol. Also fibro causes a REAL, scientifically proven problem called fibro fog, and pain and medication cause painfog. A lot of these posts are from letters that I wrote to others, so I tell more than one person the same thing, so it will be repeated.
July 30/07 (Day I found out I might not live a year)
Finally got into the heart Dr. today. I waited 6 weeks for this. When I first went to see my family Dr. 6 weeks ago, he said it was quite serious and wanted to admit me but he doesn't have hospital privileges. He called this Dr. to see if he would admit me. He said no, not until he sees me in an appointment in 6 weeks. He said "I am telling you I have a young woman here who could die at any moment and you are telling me she has to wait 6 weeks? What if she goes to the E.R.?" The heart Dr said they would stabilize me and send me home but still HE wouldn't see me until the 6 week appointment. He didn't even tell my family Dr. that HE doesn't have hospital privileges either! Now I am being referred to a heart Dr. WITH hospital privileges which will take 8 more weeks. If my family Dr. would have known this first heart specialist didn't have hospital privileges, he would have sought out one WITH hospital privileges to begin with! Now I will be wasting 8 more weeks! This heart Dr. said if this amount of heart damage continues every 6 weeks, I might not make it until treatment, because in Canada it could take 6 to 12 months! In the USA you can get treatment within 24 hours of finding out you need it.
So many doctors will not deal with the local hospital! THEY ARE DISGUSTED by the politics that go on there. I have seen many leave town, GOOD ONES, and others just do not deal with the hospital at all, just home care. Anyway, 6 weeks ago my EKG looked almost normal. Yesterday's EKG showed "a significant amount of damage to happen in just 6 weeks". He wants me to have another test to see if angioplasty would be any help, but that will take another 8 weeks, and if I have the same amount of heart damage in the next 6 weeks as I have had in the last 6 weeks, I will be even closer to dying. Then if I AM edible for angioplasty, I will have to wait 6 months or more. By then my heart will be too damaged to do the surgery. So I am dying because of Canada health care delay??? Makes me want to go to another country to get this test and treatment.
The biggest new travel industry is medical tourism. Its hugely popular to go to other countries for state of the art medical care, which is much cheaper and faster and they put you up in a 5 star hotel with doctors on staff at the hotel, to heal for $25 a day!
I don't know whether to ask our politician to hurry my husband's immigration so I can get well, because I do think I will get healthier if he is here, or to just leave it as it is and I will get worse. I don't want him to come here if he will just end up being a widower. I don't want to put anyone through the hell of living with a dying wife in a strange country where he couldn't even get his meals taken care of.
I am working full time calling agency after agency trying to find someone to talk to, and getting passed around and put on hold and told they won't talk to me, which is just making me more and more frustrated every time I pick up the phone.
Why does God want me to be so alone? Yes, HE is with me, but at a time like this, we need a human being to talk to and more than one to help my family with day to day living.
On the first day that I spent so many hours trying to call agencies and getting pushed away by them all, it just reinforced the idea that for some reason God wants me to do this completely alone. Even the distress line put me on hold (sounds like a skit from a Saturday Night Live Skit, doesn't it?lol) and an agency that advertises that they are there to refer people to other agencies that could help them, and their motto is "THAT'S WHAT WE DO"...said they had no idea where to refer me, that she was closing up in 15 minutes and didn't want to turn her computer back on, and other excuses, and I called the hospice. I asked if there was a counselor there or someone I could talk to after just hearing this news. They told me I could not even talk to them until I got a referral from my Dr, but that the Dr won't refer me until he is SURE I only have 6 months left, and if I live past that 6 month time, I am taken off the program, no matter how sick I am, and put at the bottom of the waiting list again, so they don't refer people unless they are ABSOLUTELY sure it is shorter than 6 months so the people don't have to go through the hell of being removed from the program while they are at their worst. I don't think I will even be referred there, because as some here said, doctors can't give a specific time line. That is up to God to decide. I have had my heart stop many times, but they resuscitated me and I'm still here! I was able to find an online hospice support group yesterday, and so far they are very kind, but they are all hospice workers, or family members of people who died, none in there who went through this themselves. If I could live longer I'd write a book for people who have just been told they are dying. There is obviously nothing out there for us now. Someone suggested to make lists, like a list of things people could help me with, a list of things I WANT to do if I get the strength and money, a list of things that need to be done, but its overwhelming because I barely have the strength to think of the lists, and certainly don't have the strength to do all the things on the lists. One friend suggested to just write my will and maybe plan my funeral and then just relax and enjoy life. Everything I own (it all fits into one room) can be sold to someone who buys estates. So many things that were on my "to do " list last week, I look at now, and think "if I'm not going to be here, why bother with that? If I have limited time and energy, I want to use it on things that I want." I am a newlywed and was in the process of getting all my cards changed over to my married name, but now wonder if the hassle is worth it. My husband is overseas waiting for immigration and it has been delayed time and time again. now I see why. It would be horribly miserable if he came to a new country to live with a dying woman and could not even get 3 meals a day because he doesn't cook and neither can I at the moment. hmmm...I think I am repeating myself. Forgive me if that's the case. Too many thoughts swimming in my head all at once. I have even thought of trying to get a loan to do something I have always wanted to do, or even to go to another country to get FASTER treatment so that I might live! I am not well enough to travel, and it will take so long for me to get a passport, that I don't know if that is practical. Just thinking of every possible option. Now if I had money, someone to help me get to another place, and a bit more energy, I would have a bit of fun before I go! I thought of selling almost everything I own so I could do that, but at the moment I don't even have the strength for a garage sale or to take all my items to the local place that sells it on ebay. I sold on ebay by myself for a year, but didn't have the strength for the picture taking, documenting, taking 20 boxes to the post office every week, dealing with honry customers, etc. Oh well, I have faith. I have HOPE. HOPE is the only thing that keeps us sane and keeps us going...so I have to hope that some people will be sent to help me. In our house with 4 terminally ill people, we tried for 10 years to get home care, but were always turned down because unless we need someone to feed us, or bath us, or give us meds, we don't get help. I don't need any of that...and if that's all they offer, why have them come?
Ha! I won a nice 2 disk CD today! So this week I won 2 hamburgers, $10, a pop and a CD. I think I'd better buy a ticket of some kind for something big, since I'm on a roll! Maybe one of those tickets that the money goes towards helping charity, and the raffle prize is a car or house or something. lol. Are raffles gambling? Wow isn't it awesome how sometimes God drops little gifts from heaven to make up for the hard times? Sometimes material, but more often spiritual or emotional, in the way of friends who say just the right thing at the right time, or you flip open the Bible to the verse that you needed right then, or are led to read a certain book that helps you get through another day...God is good.
About an hour ago we had a real faith promoting experience that I will put into my journal.
First, some background that led up to the experience. I live with mom, who has been semi-conscious since I got home from the Dr. and told her only part of the news, but she put 2 and 2 together, and the stress caused her blood sugar to raise so high that she went into a really deep sleep, one step before diabetic coma. Also right when I got home from the doc, an email was waiting for me telling me that a friends 18 day old baby just died...so my head was just spinning with dealing with my own bad news, the friend's baby, and trying to decide whether to call 911 for mom or not. I didn't know whether she had accidentally taken too much medicine, and that's why she was so unresponsive, or if it was high blood sugar, or some other reason. I prayed about it and got a calm feeling that she would be ok if I just kept trying to wake her and as long as she could respond and I could keep getting fluids into her, she would be ok. It happens quite often to me also, but I don't have anyone to check on me or to help me the way I was able to help mom. Anyway for all Monday afternoon, all Tuesday, and Wednesday most of the day,she was in this sleep.
I should not have told her anything about the Dr. appointment I guess. Then she would not have stressed out so much that her blood sugar raised so high. Anyway, without telling me, Mom got up out of her semi-conscious stupor, gets dressed, gets in the car (she should not have been driving) and went and got groceries...more than I have seen her get in about 6 months. That was another sign that she was still not quite thinking clearly. We have this folding cart with wheels on it to carry groceries from the car to the house, and she put some in there, and came to the house, and I lifted the cart up all the stairs to the kitchen, (which I shouldn't have, I paid for that physically)... then she went back out for load #2. I was unpacking groceries in the kitchen, and heard a crash. I looked outside and mom had fallen down the stairs with the cart on top of her. I ran out and pulled off all the groceries and tried to pull her up. Half of her was hanging off the edge of the stairs. AT THAT VERY MOMENT....GOD'S PERFECT TIMING...my brother came to the house, ran to us and helped me lift mom up and see if she had a broken hip or shoulder or whatever. Dad was just put into a nursing home last March, which has completely turned our lives upside down, and now thoughts of mom being in a nursing home was running through our minds too. I got mom settled down and examined while my brother put away the groceries for the first time in years, and when we determined she just had a scrape and a bruise, we thanked the Lord that it was not worse, and we realized that it was a very visual sign that the Lord was protecting us! By then, my heart was going a mile a minute and causing pain , so I collapsed on my bed, and again, perfect timing, my husband from overseas called me! its 3:45 in the morning for him. It felt good to know that we still have that kind of connection. So I told him what happened and that it was a sign that God was watching out for all of us, etc. and he was very happy that he could hear the whispering of the Holy Spirit loud enough to obey and call me at that perfect moment. I love the Lord's perfect timing!!!
What is even a greater blessing, is that my brother, who has suicidal depression, and he was attacked by a dog 2 weeks ago, and 2 days ago really spilled his guts about how frustrated he is with religion etc, just called me tonight he told me that he KNOWS that was PERFECT timing and the fact that Mom didn't get hurt absolutely is a visible sign of God protecting us! She's 75 years old and has many illnesses and osteoporosis and that fall should have broken a hip and a shoulder!
I pray and pray and pray to know what to say to my brother or what to do to help him see life differently, then today I prayed, saying that I don't know what to say or do, and asked that the Lord would do something, point him in the direction of things he could read, or something people say to him, to let the light bulb go on and help him start thinking better, to have a better life, and this seemed a bit dramatic, but it was needed, something to shock him, something VERY obvious that God is protecting us. I hope he remembers this visible sign that God is protecting us. It was a valuable lesson for Mom and I too, at this time when our family's lives seem to be such a delicate balancing act, it was reassuring to see the Lord in action, protecting us.
Just thought it would be good to share a good experience with you for a change.
I found thousands of books and websites about grieving for someone who is dying or has passed away, but NOTHING about people who have been told they are dying. I also found that people dying of Cancer are very pampered by the medical system and by society in general, but if you are dying with any other disease, you are pretty much on your own, even though we go through all the same things as those people with cancer. With cancer, there is a chance to recover. People with other diseases, by the time they have been told they are going to die, probably will not recover, yet they are not taken care of like Cancer victims are. I am happy that Cancer victims get that type of care, but I am hoping that the medical world will wake up and realize that people dying of other diseases need the same type of care, hospice, pain control, counseling, clubs and groups of family members trying to deal with it, etc.
I am a very private person. I have not even told my family that I have been told that I could die. I write in a journal, but never thought of a blog. I hope I live long enough to write a book about dying from the dying person’s perspective. Its sure needed. I don’t even pray out loud, for fear that any negative spirits around might hear it and might arrange things to look like the answer is from God, but really it turns out the answer is from the wrong source…and I am desperately scared of doing this, because I don’t have the strength to handle people’s rude or insulting comments, and once you go public, you will get that, because there are all kinds of people out there.
I am so grateful for the internet. I have a cartoon .jpg I wish I could put here of a man hugging his computer that says “I love my computer, all my friends live in it!” That’s my lifeline to the outside world.
The day I discovered how Oxygen helps:
I got so desperate with this heart failure that I used my mom's oxygen, and the difference was like night and day! The muscle spasms went away, the fibrofog went away, the sweating so bad that I looked like I was in the rain went away, the ability to stand and walk went from 10 seconds to about 5 minutes! It reminds me that we must have opposition in all things. Darkness and light; hot and cold; happy and sad; healthy and sick; because how can we appreciate the good without experiencing the bad, and how can we discern something that might be bad or untrue or dark without experiencing the light, the truth, the peace of the information from the right source?
I was feeling alone for the first time in my life. I actually enjoyed my solitude because of the pain and weakness, then getting the horrible news, all of a sudden I didn't want to be alone anymore, but I have kind of liked my solitude up to that point.
The Lord has been doing things to make my life better, little blessings here and there to show me that He knows my problems and He cares and He is with me.
All my life I have had lupus and fibro, which makes you seldom get positive medical tests, so you get told you should go home and leave the doctors alone, because its just stress or that you are neurotic or seeking attention or a list of whatever they can insult us with because something doesn't show up on a test. It seems weird to be happy that something shows up, but it means that I will be given some treatment, and that there might be something they can do for me. With lupus, chronic fatigue, fibro, and various other diseases that they don't know much about yet, we don't have those comforts. I was actually happy when I developed another health problem about 12 years ago that required stronger pain medicine, because that pain medicine could help with the lupus pain, too, so its weird to think of a painful condition as a blessing.
Though my heart test not showing good news is not a good thing, it IS a blessing to actually get looked at with respect and treated kindly because something actually does show up as being wrong. My Dr. last week told me to go to the E.R. to get my blood oxygen tested when I was having a hard time with sweating and inability to breathe and muscle spasms and not able to think and chest pain, so I was ready to go yesterday, but thought I would call my Dr. first to ask a question about it. The nurse said "You can't get a prescription for oxygen from the E.R! First you have to make another appointment with the Dr...he's not available for 3 weeks, then he has to order a special 24 hour oxygen test, which will take another 3 weeks, then you have to wait for the results which will take another week." I said "I have been in there 3 times already about this! It takes everything I've got to get in there! I don't have any help, and why didn't he order this test the last 3 times? It seems your office really likes the $46 fee for each appointment, so you deliberately put off something I need so I have to come back!" I never talked like that to a nurse before but I was in pain, I could not breathe well, I was ready for the E.R., and now she was telling me that I would be flat in bed unable to breathe or even get myself something to eat for another 7 weeks?
I called the oxygen company to re-order Mom's oxygen, because I had used it all, and asked them if there wasn't an easier way to get oxygen. He told me that he would set up a blood test for Tuesday and I would get the results immediately and get the oxygen the same day. So, there ARE ways to get things done faster in Canada, you just have to know the right people, or bribe the right people, or be someone famous, or something! So now I am going to pray to find someone who can get my 6-8 hour cardiolite test done before 6 weeks, and if it shows I need angioplasty, some way to get that done ASAP instead of the 6 months to a year that I was warned about. In the USA they do angioplasty 24 hours after the test shows that you need it. In fact in most developed countries they do it that way, but not Canada.
So, for those that don't know, 100% oxygen is what we should have in our blood. If you get down to 90% is when they give you oxygen. They took the first test, and it was 77%. The nurse took it into the other room and the supervisor said "That can't be right or she would be unconscious." They took it again, and it was 86%, so I qualify for oxygen. I got it brought to my house. Now I can get back into life, and it sounds weird to be thankful to be up for 5 minutes at a time, but I can clean, 5 minutes at a time, then rest in between. I can cook, 5 minutes at a time, go for walks, resting every 5 minutes on the walker or my seat cane, so shopping for the first time in 8 years or so, go to the park...boohoo. So this energy is what I have been missing? This is what "normal" people feel like ? Now I feel this energy but still not allowed to do a lot of activity until the heart surgery because after only 10 steps my heart rate was 145...but now I have HOPE! I don't think the Dr. is right about me dying in 1 year. Only God decides that, and I am not finished what I came here to do and to learn. I want to enjoy life before I go. I never got much of a chance to enjoy it yet. What little blessings I do get, I am grateful for, but I want to have more experiences and do more in life.
How ironic that when things get worse, they can seem better, because you appreciate the small things more, and every little blessing is a JOY! Every little improvement in health makes you appreciate what you have because you did not have that much health earlier.
Being grateful seems to bring more and more blessings. Maybe because so few remember to thank the Lord for anything.
My living circumstances
I am 47, RE-married, but my husband is still trying to immigrate. My children are grown and married with kids but I have only seen them and my grandchildren for 3 hours in 10 years. I live with my mom who is also in the last stages of lupus. My father lived with us until March when he could no longer stand so he is in a nursing home. We could take care of him despite the Alzheimer's, heart failure, diabetes and cancer until he could no longer stand. Now we have to go feed him twice a day. Mom and I are too sick, so my sick brother who has Parkinson's disease takes care of him. He lived with us and cooked every night until Dad went to the nursing home, then he got an apartment of his own and feeding Dad is all he has strength for each day, so none of us is eating well. Just 4 months ago I got so weak that I can't stand for more than 10 seconds to even make a sandwich or a meal, so we are living on things you can grab, like cereal, ensure nutrition drink, yogurt, pudding, fruit. I get a few dollars from disability but not enough to live on my own. I was able to earn more a few months ago by doing freelance proofreading online and worked with my husband’s translation company. I have not been well enough to do that for months.
HOSPICE IS NO HELPAs for hospice...seems like cancer victims get pampered,especially if a Dr. can give an estimated time left,like 1 year orwhatever. Listen to the rules of my local hospice and see if itseems weird. My doctor MUST certify that I have less than 6 months.He says he can't do that, because only God knows when I will go, noperson does. Until I get a "time" of 6 months, they won't even talkto me on the phone. When you are enrolled, if you live longer thanthe 6 months, you will be taken off the program. So even if I amonly 10 days away from dying at that stage, too bad, I went overtheir limit. I am then on my own to die alone at the worst time. Isthat how most of them work? I think its barbaric to leave a person,walk out of their house with the equipment, meds and staff and justleave a person alone at their worst time, closest to death.I think when a person leaves this life, they have learned allthey needed to, so they have "graduated" from this school of lifeand they get to go home. She just learned faster than the rest ofus. Some of us don't have as much to learn as others. Some religionsbelieve that our souls lived with God before we came here, andlearned different amounts there, so that made us have to learndifferent amounts when we got to earth. some religions believe thatbabies who die were so intelligent and wise, that all they had to dowas to get a body for the resurrection. They didn't need to learnall that we have to learn. Also that same religion believes thatpeople who are born with mental limitations, like Down's syndrome,etc. didn't need to learn much, but that we need to learn from them.So now I am stuck in planning my funeral. I NEVER imagined Iwould be so alone at the last stage of my life. I moved to a newcity and was too sick to go out and meet anyone, so there would beno one to come to my funeral. All the years I was sick, I did haveideas of what I wanted, and now I'm a bit heartbroken to know itwon't happen, because I planned on sticking around (in spirit) tosee it, and to see who cared enough to come. I did see a movie where a lady had her funeral BEFORE she left, so she could see who would come etc. but then the lived longer than the Dr. said, so people got mad at her instead of happy for her. People are strange sometimes. I hope to hear from someone soon.
How do I tell, who do I tell? When do I tell? I have not even told my family or anything. I don't think I could bear their sadness, and couldn't bear their grief. It would "break my heart" even more. I told a few friends, but 2 decided never to speak to me again. One was onlineand I didn't know how much he cared about me, and he almost had astroke. Had to lay his head down on his desk for a long time, andwhen he recovered a bit I told him to go get a wet paper towel toput on the back of his neck and cold water over his wrists to drawthe high blood pressure from his head to the wrists.The other friend is just too sad about me dying, and doesn'tknow what to say to me anymore. I told her to just forget that I amdying, because if I have it my way I am NOT dying yet, and just talkabout everyday topics like we usually do, but she can't do it. Shewont even take my emails or phone calls anymore...so this REALLYmakes me feel alone. I don't want to cause anyone else to suffer.Has anyone else been through this or had a family member go throughall these things that happen when they get told they are dying?Blessings,Sheila
There are some books for people that are dying: One Year to Live by Stephen LevineOn Death and Dying by Elisabeth Kubler-RossDying WellHandbook for MortalsThe Grace in Dying : How We Are Transformed Spiritually as We Die Sacred Dying: Creating Rituals for Embracing the End of LifeAfterShock – What to do next when you or someone you love gets devastating news
I will live as fully as I can as long as I am alive, and I will just make my final arrangements and leave it at that. After all, we are all going to die and don't know when.
Actually my heart has stopped more than a dozen times and they have brought me back, then tell me I can't live more than 2 years, and I tell them "So? my heart will stop, I'll get sent back, and I'll still be alive" but this time when the tests looked so much more serious, it felt much more real when he told me I might not make it through a year...but I think I have things left to do on earth, and since my heart kept stopping, and I would have driven everyone in Hell crazy, and Heaven won't take me until I learn what I was sent here to learn and to do, so I'm stuck here on earth for a while. lol. Its just quite hard to be so sick and so alone, so support groups are GREAT.
There are THOUSANDS of groups for people who are grieving for others, very few for those who are trying to deal with the emotions of dealing with their own demise. Some say my family will never forgive me if I don't tell them I am dying, so they can say what they want to say to me, finish things with me, but how is that different than what happened to your daughter? No one had a chance to say goodbye to her either or say last words of love to her either, but you can still say those things even after the person has passed, and the message will get through to them. They KNOW we love them, and often they try to get through to us that they love us too, and that they are fine, so that we will stop grieving and keep living.