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Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts

Sunday, 14 December 2008

Amazing What A Human Can Endure, Isn't It?

Find all sorts of goodies with this slogan and the bottom of the blog at www.butyoudontlooksick.com

What's the saying? No rest for the wicked, or no rest for the weary? I must be both. lol.

Crazy 2 months-unbelievable amount of legal work I had to do, then HUGE work project for US government, then Mom in E.R. with flu/pneumonia, then I got flu, then pneumonia/bronchitis/asthma, then my computer died, losing 10 years of every precious picture and bit of information on it, then second computer breaks, then I develop some problem that feels exactly like I am in labor, end up in the hospital, I get abused, and my mother gets bullied and pulled out of my room by security guards because she told my abusive male nurse that I was in too much pain to change myself, so could he please get a woman nurse if he is not willing to help.


I know already which friends I will be making angry by saying that I am exhausted and a bit discouraged, but sorry if I offend those of you, because what I am going through is VERY tough at the moment. IT WILL get better, but unbearable pain+exhaustion+abuse when I seek help, affects your strength and attitude. Everything is NOT so positive right now. I WANT TO BE UP AND ACCOMPLISHING THINGS AND GETTING READY FOR CHRISTMAS!

This section was written on December 7, just so you can keep track of what has happened in what order in this series of events.


The mystery of the disappearing decade.

I have lost track of time. It has been week after week of one serious occurrence after another. I apologize for the length of this blog. I have shortened it many times, but it's the only way to explain my MUCH TOO ADVENTUROUS last month or two.

It seems as if a few overwhelming events happened before I took Mom to the hospital for the flu a few weeks ago, but I can't remember all of them. I know the Internet service man came to replace my modem and cable wiring for my Internet. A couple of days later, Mom got pneumonia or bronchitis and I got the flu. Then Mom's health cleared up and I got pneumonia/bronchitis and asthma. I was planning on getting a computer repairman to come to the house for about a month because of computer problems, but there were many delays. A complicated project of proofreading I had to do for US gov't, and then me getting sick so I didn't want to pass my illness on to the repairman, so I delayed calling, until my computer had a meltdown.


Well about a week ago, (maybe more, I have lost sense of time), my computer died. It would not even turn on. My brother was good enough to take it into a shop to have it fixed. I had a note on the side of the computer telling the problems I had been having with it, along with a note that said DON'T ERASE ANYTHING WITHOUT MY PERMISSION! I HAVE IMPORTANT GOVERNMENT DOCUMENTS ON HERE, AND ALL MY EMAIL ADDRESSES FROM THE PAST 10 YEARS ON THE DISK IN THE CD ROM. I had 10 years of important information on this computer, and I had saved the most critical information on a disk, which was still in the computer, but the power could not be turned on to get the disk out. The tech took apart the machine and found that the motherboard had burned out, due to the fan breaking. (The fan cools down the parts inside.)

Something had also happened to the hard drive as well, so I LOST ALL INFORMATION! The Tech couldn't get the disk out for days, so I just went into mourning, thinking of all that I had lost.


If any of you have my email address, will you please write to me to I can add you to my address book? Also if you have any old emails from me with email addresses of my friends on them, could you send me those? Unless people write to me, I have lost them all! A few might write to see if I am still alive or not, but I feel like everything I've done from bed on this computer for the past 10 years has just been lost. All my work, friends, writing, all my pictures of my grandchildren, 2 of which I have not even met yet, collections of encouraging inspirational forwards, all my writing, all my journal entries, books that I had saved information about and started to write... all that I have learned from the hardships that I have experiences, encouraging emails from dear friends that I read again and again, all the legal work that was recently sent to the courthouse to get my husband home due to hardship...all gone! I thought one of the reasons I was still on this earth was to write these books. Now everything I saved for them, every thought I had about them is GONE! So I even felt like my life's purpose was lost.

It's good that this happened AFTER I sent the info to the court, but this lawyer loses half of my information over and over, so if she loses it again, I don't have extras to send to her. I think that I am losing hope of being with my husband. Too many things have gone wrong for 5 years of trying to get him here. Not only do we have to get him out of the war zone, as a civilian instead of a military man (but he is working for UK and USA gov't in translations), but also he has to immigrate. One of the things needed for me to sponsor him is that I must be able to take care of him for 10 years in case he can't get a job or in case he gets in an accident or gets sick, and the legal system's stress has made my lupus so severe that I can no longer even care for myself, much less care for someone else. My husband is angry about that, because he WANTS to be here to help care for my family, who are so alone we don't even have a friend or neighbor to help us shovel a sidewalk or take us to the hospital. He wants to care for us. I think I won't be with my husband until after we are resurrected. I have days that I am very hopeful about us, but right now I am losing hope about us. Maybe because I was/am too overwhelmed to think with strength and positivism.


I am so tempted to go back to saving everything possible with pen and paper again, like before I got the computer 10 years ago, and anything electronic that MUST be saved, I will be saving to a removable USB memory stick that has more memory than my whole computer. I will use the computer for keeping in touch with others, and research, and for my writing, and proofreading job, but not for storing information.


Thank the Lord that we had a spare computer in the house that we just paid $150 to get repaired a few days before, so I started to hook it up to the Internet, but got to a certain point where I had to call my ISP (Internet service provider) to get codes and numbers, so I called them, and the technician on the phone started arguing with me, telling me it was impossible for me to have 3 computers in my house that all were connected to the Internet. I asked if I could please talk to someone else because I really don't want to fight, I just want my email working again. He said "OK let's try something else here." He led me from one place to another in my computer, and then told me to delete my drivers! I don't know much about computers, but I know the drivers are what make things work, like the monitor, sound, and everything else. I said, "Erase the drivers? Then how will I run my computer?" He said he wanted to see if those drivers were the reason for not being able to get onto the Internet, then he would help me re-install the drivers from my original disks in a minute. So I did what he said, then he told me to call the shop that the computer had just gone to a few days ago to see if they were able to get it onto the Internet, then call him back. I called the shop; they said they COULD get online. I called back the ISP, and that same technician refused to talk to me! I asked to speak to a supervisor, and told him that one of his employees just told me to delete all my drivers, and that it would cost about $150 to get the computer fixed, and I already had one computer in the shop, and is there any help he could offer me, since it was that employee's fault? He acknowledged that it was the company's fault, and said he would send a computer tech to the house in the morning to re-install everything that was lost. I really appreciated him doing that. So now I had 2 computers break down in 2 days, and was still a bit sick. I was so nerve-worn and physically worn out, and afraid that I would lose most of my friends.


What a blessing I have this blog!! All that is stored online on this blog is safe, and all of my dear friend that I have made through this blog can still find me. If not for this blog, I would have felt like my life just disappeared into thin air.


After a few days of taking the first computer apart, the computer shop got the CD with my info out of the computer, and I got it back, but something happened to that also, so when I tried to transfer the information back onto the spare computer, it tells me "transfer error", so I can't even retrieve the address book and other important business information and pictures from the disk! It will take months to replace every program and retrievable information back onto my computer. This computer has less memory, so I will have to use the memory on the computer for the programs, and save anything else on an external hard drive.


I know that there is a reason for everything, but I am eager to know the reason for this. I know things just happen, but to not even be able to get my information off of the disk I saved it to, that's just strange. Too strange to make sense.


I went into mourning for about 24 hours. The more things I realized that I lost, the harder I would cry. I got myself so upset that I started thinking about not only the things I lost on the computer, but that I had lost my first husband, all of their family that I loved like blood relatives, I lost my children when I had to leave the USA in a hurry, I lost my grandchildren because I have been too sick to get back to meet them, I lost my Dad, one brother is estranged, one sister told me she would never travel with me again to help me go see my daughters because she is scared of my diabetes. She did take me to see one daughter 8 years ago; I got to see both girls for 3 hours and to the younger daughter's wedding. Now she tells me she is going to visit my daughter and go to her Mrs. Idaho pageant that she will not go with me. I need help traveling, so I won't be seeing my daughter in the pageant. So I feel like have lost my sister. I feel like I have lost everything except my Mother. I am so very grateful for living in a peaceful country with no pollution, and for my overflowing basket of blessings, and for having food and shelter, but feel like I've lost everything else. I guess the saying "If you have your health, you have everything" is true, and the converse is true. If you are too sick to even care for yourself, you don't have much of a life.


Through the mess of trying to fix these 2 computers to get back online, my brother who lives locally completely flew off the handle and said some emotionally destroying things, so I thought I had lost him too, and God has some unknown reason for keeping my new husband and I apart, so I was mourning for everyone I had lost. There will be friends who will think I am dead, or think I am just ignoring them, and I hope some will write to me so I can explain what happened, and get their email addresses again.

Another blessing happened though. After my brother's heartbreaking outburst, the next day he brought me a cute toy white monkey holding a red heart pillow with "I love you" on it, as an apology, so I gave him a big hug and was so happy that he apologized and made up with me. With his mental illness, he's very much a "scrooge" (incurable negative grouch) and so I didn't expect him to ever get over his anger. Because of lots of prayer, and a soft hard under a hard exterior, he did. He felt sad for making me upset.

It took 5 repairmen to get me back online, working on 2 computers. It's also a blessing that we had a spare computer so I didn't have to wait to buy a new one. After the ISP technician left, my brother decided he would help by taking the RAM (memory card) from my first broken computer and put it into this second computer. He opened it up, put in the ram, then when he closed it up, a part from the back of the computer fell out, and I was no longer able to get online again! This made it the 4th time that things were done to cause the computer to not be able to get online! I didn't plan on telling him about the problem, because his first abusive outburst to me happened when I was telling him that he didn't have to worry about fixing my computer, because that a technician was being sent over to do it for free, and he yelled and screamed that he had to do it himself, and that's his curse in life and it never ends and on and on, and I told him I was trying to make this easier for him, and he told me he was trying to make things easier for me, and we fought about it. So there is no way that I could tell him that he broke my computer again, or there was no telling what he would do in his mental illness-scrooge-state of mind. I didn't know whom I would get to help me this time. I don't have the strength to carry the computer to a shop to fix it and I felt too sick to get a technician to come sit in my bedroom while I was sick in bed, so I just thought I would do without for a week or so. A couple of days later, my brother came over and asked why I was not on the commuter, because usually the computer is on 24/7. I just told him I was in too much pain right now, but he said "That never stopped you before, isn't it working?" I said, "I'm not sure, when I feel better I will test it and see." He came over and saw the part in the back of the computer that had fallen out, swore, tore all the wires off, walked out of the room with the computer, yelling about this being his curse in life and he wishes he could never see another computer as long as he lives and why is God doing this to him etc. etc. and he fixed it in just a couple of minutes, and brought it back in, turned it on, and it got online! I told him thanks a million and I really appreciate all that he has done but to please turn it off because I can't even bear the light or sound right now. So after a few hours when the pain eased up, I was happily, finally online again!


I was surprised that I cried so hard when I lost all of this info, and I really worked myself into a bad emotional place. I just had too much stress all at once and not enough energy to deal with it all. I am still trying to recover from the pneumonia/ bronchitis/ asthma, which has caused other complications with diabetes and lupus, then I had 4 MAJOR confrontations while trying to get my computer back online, 2 with family and 2 with the Internet company. I was sensitive due to the anniversaries of Dad's death, of my parents marriage, my first marriage, my new marriage, (all within days) and started wondering why God wanted me so very isolated and alone despite how sick I am, and how much help I needed. I started thinking of how Mom is the only human being I talk face to face with and can hug, and what will I do when she dies? I'm so glad we are so close and love each other so much. I started feeling so useless and hopeless and I hope someday to understand why God wants me to be so very alone (physically) through all of these trials. I know that was just Satan working on me when I was already down, and it passed soon. Our Redeemer IS there to comfort us, and He does, whenever we ask. He helped me remember many comforting scriptures, which calmed me down, such as "Worry not for tomorrow, for tomorrow will bring troubles of its own." And "He will supply all your needs" and "I will never leave nor forsake you" and many more. He is more powerful than Satan, and can send Satan away. I am blessed to have the emotional support of my Internet friends, and it helps A LOT, but no one can get through life alone. We all need the help of other people physically, and I hope the Lord will soon help in that area. I was ashamed of my "falling apart", but I guess everyone gets overwhelmed sometimes.

It does feel like I lost my mind, because everything that is in my mind was in that computer. My daily chores, weekly, monthly, my budget, the bills I have to pay, gift lists for all year long for birthdays and Christmas, grocery list, and due to my bad memory from illness, I have to write down everything. If I don't write down to brush my teeth, even that sometimes doesn't get done.

I have no right to complain, really. All of these problems are nothing compared to the torment of war that my husband is living every day, and the hardships of most people in these last days. I was ashamed of my negative feelings, but those are only human. Well I am thankful to be online so soon. It could have been worse. My sister is traveling here tomorrow in bad weather, so I am praying for her safety. She says she will help me get my Christmas boxes to the post office. I should go get her family's gifts wrapped and do some decorating before she gets here. It feels good to be in touch with you again. To you, it was just a couple of days since you heard from me, but to me, it felt like a traumatic month or so.
Blessings, All!
Bluebirdy


Written Dec 10/08
THE GIFTS THAT SCARED PEOPLE TO DEATH
This is just the latest of my husband's experiences there in the middle of the town that the Taliban are attacking. Yesterday is EID, which is the Muslim equivalent of Christmas. They have Eid in the Himalayan Mtns where my hubby is. It is the day that Abraham took his son to a mountain to offer him as a sacrifice, and then God stopped him before he actually did it. The Muslims slaughter an animal such as a goat or cow, and have a feast with the meat and exchange gifts. The houses in the area where my husband is, is like the times of Jesus. Each house is built in a square, with the rooms along the outside walls, then an empty courtyard in the center. There is a door from each of the rooms to the center courtyard, and there are steps up to the roof of the house. If anyone remembers the story in the Bible of the house where Jesus went to preach, and there was a very sick man laying on a stretcher, and he was lowered from the roof into the house where Jesus was preaching, well I could not picture how a person could be lowered into a house from the roof until I saw pictures of these houses with the courtyard.

Anyway, in the morning, they heard a huge helicopter, called a war-ship, getting closer and closer. It has 2 ends so it can fly backwards or frontwards, and they can shoot from the helicopter from both ends. It was getting so low and so loud it was scaring people, so everyone on the street where the houses are where my husband is, came out of their house into their courtyard. It was so close, they thought the people in the plane were going to start shooting into the houses or land on one of the roofs or something. The young wife next door to my husband fainted, and the heart specialist in the house on the other side of my husband's also passed out. They threw something out of the warship, and an elderly lady yelled, "IT'S A GRENADE! RUN!" She ran. When my husband looked closer, it was flat folded up cloth in plastic. They had thrown out about 5 in the courtyard of each house. They were shawls, (head coverings/hijabs), pretty ones, as EID gifts!

My husband has medical experience, and a few seconds later someone was at the door asking him to come next door to check the heart specialist who had passed out because he was not waking up. My husband went there, check the heartbeat etc. and his heart rate was dangerously slow, so he got the sons of the house to get the father to the hospital immediately. Then he called me to tell me what had just happened, and while we talked, another phone rang, and when he answered it, he was told that his neighbor had just passed away.

I want my husband to write a story to the newspaper, using an anonymous name if necessary to protect his safety, to tell what happened and to tell whoever gave those gifts that it was not such a good idea, and he wonders how many other people fainted or had heart attacks from that "gift giving" excursion.

About every 3 days now he has a very close encounter with death, even though he is working there as a civilian translator, not a soldier in combat. Last week there was a Taliban yelling at a woman who only had a shawl on her head instead of wearing a bursa that covers you from head to toe. My husband risked his life and went to the Taliban man and said "excuse me, but if you will have mercy on her, I am sure she will not make the same mistake again. Will you let her go just this once?" The Taliban man asked the woman if she will wear a burqa next time and she said yes. Then the Taliban guy told my husband "You know, if you grow a full beard it would be much better for you." He said this because this month, laws were made that women must wear burqas head to toe and women must not work in public anymore unless it is in medical care, and men wearing no beard can be imprisoned for 60 days, and partial beard can be imprisoned for 30 days. My husband has a baby face. He can only grow a partial beard, so he could have been taken prisoner right then, but my husband said "I am really trying, sir. My beard has never been very heavy. I know I should have a beard, and that woman knows she should have a burqa, but these rules are very new to us." The Taliban said "Would you like to sit and have tea with me?" My husband said "No thankyou, I need to get my marketing done, but thank you for being so kind." So now my husband hopes that one man stays guard on that corner, because he has made friends with him and will be safe as he goes to and from market with only part of a beard. Another Taliban man might not be so merciful. It's so sad. This valley is called SWAT; it is halfway between Afghanistan and China on the Kashmir border. It is the "Shangri-la" of the oriental traditional stories, a heavenly valley now overtaken by the Taliban because they want it for their own headquarters. A heavenly, peaceful mountain valley, away from civilization, has now been turned into a valley of torment and war. I have almost given up hope that my husband and I will ever be together until the resurrection. We are really stuck in a touch situation. We love each other too much to split up and be with anyone else, and there's no way we could stop thinking about each other, yet we can't be together either. Star-crossed lovers, maybe?





Written Dec. 13
Just moments after my sister left from her visit, I ended up on the floor, writhing in pain, in more pain than I knew a human being could endure. I was taken to the hospital, and abused so badly, and even my mother was abused so badly when she came to be with me, that I had to write a letter to the hospital administration, and if I don't get any action from them, I will take the case to the newspapers and to the higher medical boards in the province. I have HAD IT with this medical abuse when I am too sick to even defend myself! I was literally SCREAMING in pain and couldn't control it, and could not move on my own or think, and could talk only between screams and breaths, 1 word at a time...and when I needed help the most, I was insulted, neglected and my mother was taken out of the E.R. by security guards! Rather than try to write the whole incident again, I am going to post here the letter I wrote to the Hospital Administration. If this abusive male nurse dies not get disciplined from administration, I will take the case higher. I have changed some of the words for this blog, in case some of you are sensitive to terms of human functions. I made it more technical for the hospital administrator.


Dear Administrator;
I had an experience in the E.R. that I need to let you know about. I am upset enough that I am considering going to the newspaper and perhaps some higher authorities unless you can help me discipline the male nurse that was responsible.
On Thursday, Dec. 11, it was the second day that when I had to use the washroom, my whole torso would create one huge muscle spasm/contraction, like it felt when my body was being squeezed while giving birth. I had no clue what could cause that, but it would last for at least half an hour. It was just as intense as giving birth. I have had kidney stones, lupus nephritis kidney attacks, and other severe pain that I live with regularly, but NOTHING compared to this. I wondered if I was giving birth to a kidney or something! Friday afternoon, it was not going away as it had each time previously, and whatever was happening to me was squeezing me so hard that I fell to the floor and it was squeezing air out of me and through my throat, making me scream, and I couldn't control it. By then the pain had localized to right high kidney area and radiated down to my bladder area, and it was worse than any pain I had ever experienced.
I live with my mother, and in between these spasms and breaths, I yelled for her to call 911. The paramedics got here, but my house is built in a way that there's no way to get the gurney/stretcher into the house, so they lifted me up from under my armpits and were pretty much carrying me out, helping scoot my feet ahead at the same time.
When I got to the hospital and they helped me roll onto the hospital bed, I was still yelling and so terribly embarrassed about it! I have to deal with a lot of pain DAILY, with lupus and trigeminal neuralgia and fibromyalgia, but I have been very strong and silent about it. I avoid the E.R. until I think I might die, because in my experience of living in Lethbridge 11 years, I have found that if you go to the E.R. alone, you are insulted, abused, neglected, under-treated, but as soon as you take someone with you to be a "witness" or advocate, the things that the staff would say to me WITHOUT a witness/advocate, just don't happen.
I think I passed out from the pain once I got on the bed, and was awakened by a male nurse saying "Sheila, take off your shirt and put on this gown." He THREW the gown at me. I said in between breaths/spasms..."I can't move." He said, "The paramedics told me you got up and walked to the ambulance yourself, so don't give me that, and your screaming is completely unnecessary and you can stop that right now."
If I would have had a pillow, I would have put it over my face to muffle my screaming. He said "Well I am NOT going to change you, and you won't be seen by a Dr. until you change your clothes, so get to it." I tried for about half an hour, and he came back and asked what was my problem, why wasn't I changed, and I said I needed help. At that moment my Mother walked in. She is pretty much bedridden. She only came out of the house to be with me at the hospital. She heard the male nurse say, "You won't be seen until you change your clothes so you might was well get at it." Mom said, "She can't move! She needs help. She's been screaming in pain! If you don't want to help her, why don't you get a female nurse to help change her?" He pointed his finger in my Mom's face and said, "YOU sit DOWN! You are making her THINK she can't do it! She walked to the ambulance! She can change her clothes!" Mom started to describe that I did not walk alone, and the male nurse left and got the security guards, and told Mom to leave. Mom said, "I don't want to! She needs someone with her!" The male nurse said, "Are you going to leave alone or do these security guards carry you out?" Mom said, "I have a right to stay with my daughter!" So the male nurse had the security guards grab my 75-year-old frail mother who has multiple SERIOUS illnesses and haul her away. I didn't know if she might have a stroke or heart attack from that treatment, I didn't know if she was going to jail or going to be locked into a room or be sent out to her car or what was going on, and that made the pain even worse, so I was trying to cover my mouth with my hands to make the screaming and crying stop. I didn't know there WAS pain like this. I was thinking I was going to give birth to a kidney or that something inside me had torn apart or something. Now I was so afraid for my frail Mother, and also very afraid for myself because now I had no advocate, and this cruel nurse could pretty much treat me however he wanted, and it looked like he was going to make me suffer a lot during the worst pain I had ever experienced in my life!! I was SCARED, and now shaking, moaning, crying, and pushing like I was in labor, and pushing on my kidney with my fist as hard as possible because it seemed to help.
A female nurse came in and asked me to explain what I was feeling. In between these contractions or "squeezing attacks", I said "Like pushing out a baby, plus burning kidney pain, going from back to front." She left, and cam back with the male nurse, who said "If we raise you up, can you help us take off your shirt?" I nodded "yes". They raised me up, pulled off my shirt and put on the gown. Then the male nurse said, "See? You could have done that!" I said "No, way." Then he started trying to get an IV into me. He tried 10 times I think, from the marks on my arms, hands and even fingers, and he said "Has anyone ever told you that you need to lose weight?" This man was as fat as I was, but I didn't dare tell him he also needed to lose weight; or for sure he would have tortured me, so I said "It's tough when you have my diseases to lose weight." He said, "Well you're too big to find a vein!" Through my pushing--I said "Did anyone tell you that you need to learn some compassion, and people couldn't find my veins even when I was thin!" I'm not sure if there was 1 male nurse, or 2 that alternated coming in, because I couldn't see clearly due to the tears. I am just grateful for the female nurse that knows that when you are pushing out a baby, you can't move or think or do anything but push and moan.
They got some pain medicine into me, then helped me get to the bathroom for a specimen, and while in there, the attack started again, so I took paper towels to cover my mouth as I screamed because it echoed so much. After half an hour in there, a female nurse knocked on the door to see if I was ok, I said no. She opened the door, and said "why?" I couldn't even talk. I was doing the Lamaze breathing technique used when I had my children. She asked if I needed help to stand up. I nodded my head yes, so he helped me up and pulled up my pants and helped me back to bed.
When the urinalysis came back, Dr. Barsky came to tell me that I had a "little" infection and that he was going to start an antibiotic IV drip. I asked how a "little" infection could hurt more than any kidney stone or lupus nephritis attack I ever had, or even more than another painful condition I have, trigeminal neuralgia, which is also called the suicide disease due to its severity, the Dr. walked away. When the nurse returned with the antibiotic, I asked her the same question. She explained that if your kidneys have any damage, kidney pain can be worse, and maybe it was not a "little" bit of infection, maybe it was more severe than that.
I have also got arrhythmia, and I have had instances where my trigeminal neuralgia pain has made my heart stop. That day I was wishing it would make my heart stop again. I just wanted to die if I would not be getting any help until I could change my own clothes, because I could NOT change my clothes, so I would be there forever in that pain.
I have stayed at home through very serious pain, too serious for me to even get out the door to the ambulance, so I just stayed in bed and fought through the pain myself. Some days I thought my heart would stop and had chest and arm pain, but I knew I had no one to go with me to be my advocate, so I was actually safer to stay at home than to go to the hospital when I was too sick to defend myself.
I don't know what that male nurse was thinking, but I don't EVER want that to happen to another person again! I would appreciate if you would locate the male nurse that was assigned to me. I think his name was Brent or Bruce, and I would appreciate knowing SOON if any action has been taken in regards to him. If I don't hear from you within about 10 days of when you should have gotten this letter, I will be going to higher sources.
There are signs all over the E.R. saying, "This is a harassment/abuse free zone." For the first 3 E.R. appointments our family had after those signs went up, they were the best E.R. visits we had EVER had, so we thought something at the hospital had changed. Maybe the staff had been retrained and rules had been changed, but now I don't know if anything has changed.
My mother and I are seriously ill. I inherited her lupus, which affects all different organs at different times. We are seemingly punished for needing medical care. We bear a LOT of pain at home, and don't come to the hospital until we absolutely can't bear it and we think the incident might kill us, and then it seems we are treated badly as if to discourage us from coming back again.
Medical abuse causes a lot of problems, just as if a husband that she can't divorce is abusing a woman repeatedly. We cannot divorce our illness. We will continue to need emergency care. We try to avoid it, but there are times that we can't, and then the experience is a nightmare because we fear what kind of abuse/neglect we will face when we can barest even speak to remember the questions they ask us or defend ourselves. I can see why some people commit suicide or let themselves die by staying home---when they are faced with the fear of abuse again and again when seeking help. It gets to the point where you cannot face the abuse, combined with the medical crisis, one more time. We have nightmares again and again about being tortured when we need help in the E.R. We can't move away from Lethbridge. I think we show amazing courage to even come back to the E.R. when we KNOW we will be insulted and abused along with what else we are dealing with, but I beg of you to help this abuse stop, by taking one step against one male nurse that had no right to say or do what he did to me and my mother.
I kindly ask you for compassion and assistance in this matter, as life is getting increasingly hard to survive when we are being "punished" for having health problems.
Kind regards and with appreciation,
(my name here)


So how am I now? I continue to have these attacks every few hours that feel as if I am giving birth. I could have pushed out 25 babies by now if I had one baby with each attack. I would have rather done that than to get nothing out of it, because then I could give each child to someone who desperately wants a child. Today is Sunday so I can't get any clinic to help, but I called a nurse hotline that helps with medical questions, and that nurse thinks both my kidney and bowel that is touching my kidney could be infected. I REFUSE to go back to the hospital, so I hold a towel over my mouth as I scream through the attacks. Tomorrow I will call my Dr. and tell her what has been happening and ask if I can be treated at home rather than go back to be neglected and abused at the hospital. I am exhausted after what seems like going through labor every 2 hours. I am discouraged because of the pain and exhaustion. This too shall pass, but at this moment, it doesn't feel like it will pass. With this much pain, there is no "living". I am not eating at all, so because of my diabetes, my Dr. will have to get me treatment tomorrow, either at home or admit me to the hospital. Lupus is such a crazy insane disease! It attacks different parts of the body each day, and I didn't even have a fever with this, because lupus was so busy attacking my body that it did not fight the infection, so the infection continued to grow out of control. I'm sure I wore you all out...but I have no one on earth to talk to about this DRAMATIC life...so I blog it. I need your prayers that these attacks will stop. They are inhuman...TORTURE! Then to get abused when I seek help...I almost want to give up.
Bless you my dear patient friends!
Bluebirdy








Blessings:

1) The Lord helped me get my dozens of Christmas gifts wrapped and in the mail on time!

2) Mom did not suffer any ill effects physically or emotionally from the security guards

3) I am back online because we had a spare computer.

4) The Lord is with me, comforting me. HOW DO PEOPLE LIVE WITHOUT THE LORD IN THEIR LIFE???

Tuesday, 11 November 2008

Frustrated and Speechless-(sort of)


It's hard to think of myself as being rendered speechless, but I was. I had something I wanted to share, but after such wonderful things were said about me in that review and in the many comments after the review, I wondered if I dared post what was happening now, in case it might change everyone's view of me...but I started this blog planning to show the good and the bad in my life, so that when I am healed, people will know it was real, so I guess I'd better open up and be honest.

Mel very generously overestimated me. I am not the wise (spiritually) person that I think he sees me as. I get lost and frustrated and confused just like everyone else. Now is one of these times.

When I felt so changed with that nutritional supplement, (d-ribose), I thought God had given me a miracle, a healing. I accepted completely that I was healed, and I had gotten a miracle. I thanked Him so many times a day, and after a cautious waiting period to make sure it was not temporary, I got the courage to share my miracle with others, and they also praised God for it, for my healing and for the hope that they might get a miracle too. I hope they do, but people with lupus or other severe auto-immune disease might have a bad reaction. I say might, because maybe mine is an isolated case. I don't know.
I thought my loving Heavenly Father had finally rewarded me, like He rewarded Job after Job losing everything and suffering so much. I thought I was going to get the chance to be functional again, and feel alive and experience joy again, but it didn't last long. I am thankful for the memory of how life felt during that time, though.

I had to stop taking the D-ribose. It appears that it is so good for you, that it even strengthens your immune system. Well for a person with lupus, that can be fatal, because already our immune system is too strong, and the fighter cells attack our bodies and organs as if they are germs or foreign objects in our body. We can't even spend time in the sun, because the sun also strengthens your immune system, making lupus worse. I got so sick that for a few days I wasn't able to roll over in bed to reply to my emails, but I could read them, and was too weak to talk, or to hold up a book to read. I had a seizure, and another time, I think I got very close to death again, because I saw some of the things that I have seen during other near death experiences. I saw some wonderful things, but things that I have no words for, so I don't know how to explain it to people. I am still spending a lot of time thinking about those images and
trying to think of how to describe them.

There is a medicine used for lupus, (cortisone) and it's very strong and has such terrible side affects that I always said I would rather die of lupus than die of the side affects of that medicine. I have only been desperate enough to try it about 3 times in my life. I prayed for guidance about how to get feeling better. Obviously it's not my time to die, and I could not just lay there helpless forever. The impression I got was to take that medicine. I didn't want to do it. I called Mom upstairs and asked her advice. She has that medicine because she also has lupus. It suppresses the immune system so the fighter cells in your blood stop attacking you, and helps with any swelling or inflammation in the body. I spent days passing out and trying to do this US gov't proofreading project during the moments I was awake. I had pancreatitis, inflammation of the pancreas, and it has many nasty symptoms. The worst was that I kept passing out from my blood sugar going too high or too low because my pancreas was out of control. Mom said that the side affects of that medicine only come with large doses and long term use, but when I talked to my Dr. , she talked about large doses like 10 pills a day, or even put me in the hospital with cortisone IV, but said she didn't trust this hospital much, we are not even checked on often enough during the day while in this hospital. I didn't want the side affects from doing that, so I took a few pills and cut them into 4, and during the day would take one tiny piece of the pill, with a bite of food so I wouldn't get sicker. This is the third day of doing that, and finally many symptoms have lessened, I feel strong enough to type again, but not strong enough to get in the shower yet. So I am thankful now for this strong medicine with horrible side affects, in small doses, BUT...


I am wondering
WHY WOULD GOD GIVE ME THAT CURE,
AND A CHANCE AT LIVING AGAIN, THEN TAKE IT AWAY???
ANY IDEAS?
I accepted that healing! I thanked the Lord SO many times a day for it. I told others about my healing and my miracle and they also praised the Lord about it! I was convinced I had been given another chance at life, to have enough strength to enjoy life or to function a bit more than I do.


I know I will learn in time the reason why God took my healing away....but until I learn that, my feelings are hurt like a child whose parents did something that hurt the child, but was for the child's own good. I feel a bit betrayed and confused by the one who I love the most...my Heavenly Father.


I am so frustrated, I use my made-up word "FRUSTIPATED!!"---beyond frustration! So frustrated, that I am not able to accomplish anything else until this problem clears itself up. I have so much that needs doing urgently, and can't even find anyone to hire to help. I can't have anyone come live with me when I am in this condition, so I get upset thinking about my husband coming home. I can't bear the thought of making life hard or even miserable for him.


Interesting that the worst of my illness happened the day that I finished all the legal paperwork to go to court to get my husband here, 5 years of work, 1800 pages done in the last 5 days of work.

OH MY STARS!! I just noticed something!! I have had this picture as stationary for years, but the stationary had this as small pictures down the left side of the paper. I thought of putting it here because it reminds me of how I feel, looking out the window, trying to figure out "WHY??" Now I see this picture in a whole new light. I have never seen the wolf outside the window. Did you know "lupus" means WOLF? She is not looking out the window, she is turned away from the wolf, from the lupus. The dove in the corner, the symbol of the Holy Spirit, is watching over the lady! The wolf is standing in water, and that water is flowing into the window, and the woman's feet are in the water, so the effects of the wolf (the lupus) is affecting the woman. The light above the woman's head, I wonder what it's symbolism is. Light...spirit? knowledge? God? Any ideas from you, my friends? What do you think that light could symbolize in the picture and in how it could relate to me and the wolf (lupus) and my sitting by the window thinking? Any other symbols you would comment on? The moon, the fact the lady is wearing all white? The water? Whatever it is in the lower 1/4 left side of the picture? Maybe your insight will give me some insight.


Love you all---u r pieces of my life and heart.

















Oh, I need to add:
This is Remembrance Day here:
The day we remember and honor our veterans
the day WWII ended
11th hour of the 11th day of the 11th month.
Out of respect for all of our veterans form everywhere:

Support Our Troops

Thursday, 24 January 2008

NEW HOPE IN LUPUS RESEARCH FOUND

Two articles that might give you some hope.
http://www.news-medical.net/?id=33556

AND

http://story.100.com/?rid=12314224&cat=a1e025da3c02ca7c
Maybe there will be a cure in my lifetime yet, if they are finding the damaged gene (#13 by the way), and now finding a mutated gene that stops lupus! I am PAST ready....and waiting for a cure or a kind Dr. who will help with treatment, or for a release from this prison of a body! Sorry to not sound so upbeat and positive, but intense pain and weakness saps the ability to reason clearly or think positively. If I had someone around to help me change my thoughts, it would be great, but I don't...so I just keep praying.
Blessings,
Bluebirdy

Thursday, 10 January 2008

WE GOT ANOTHER MIRACLE!!!

Hello all!
THANKYOU FOR YOUR PRAYERS!

~WE GOT ANOTHER MIRACLE!! We went to the hospital and instead of admitting Mom, they sent her to the outpatient clinic first, where they kept us for 7 hours, the nurse acted like she was on drugs, kept carrying messages from Mom back to the Dr. who was doing scopes on people, then we would get his opinion back that way, and she kept messing up the messages, didn't understand anything we said, we repeated things up to 6 times, I finally went unconscious from my blood sugar going too low from lack of food or water and all the stress, so they some glucose to bring me around. (And mom was the one there to be treated. Gosh...what a joke, me trying to care for HER.) She is able to do some shopping and clean house a bit (do a LOT more than me), and she can get medical care anytime so she's less apt to die than me. Anyway we got so tired and in pain and frustrated after 7 hours of this carrying messages back and forth and no Dr. seeing mom, no admitting to hospital like she was told was supposed to happen, no test, nothing...so we walked out.
It was a tough day but WORTH IT cuz mom won't be having surgery soon!
Today we start over again and I take her out of town AGAIN (did this day before yesterday) to the Dr. and hospital there...BUT THIS MEANS THE SURGERY WILL BE DELAYED!!!---Which means she will be alive for a while which means I won't be homeless. They don't do surgery in this little town I take her to see her Dr. at
Now if she can delay this surgery until my husband gets home, he can earn enough that we can continue renting the house we are in now, if anything happens to Mom. Or if the Lord can delay the surgery until other living arrangements are made for me (in case my husband doesn't come back from the war zone), that would be a wonderful gift from the lord too.
Got to drag my painful body to put all mom's luggage in the car again. (Why am I doing this when she can do it and is healthier than me and doesn't use a walker and doesn't have any muscle pain at all?) ---yeah...cuz I'm the obedient daughter that is grateful for all the years she cared for me. My brothers and sister have all told me they are really worried that I will die before Mom, because she has been served and waited on for 30 years, and I have served and waited on my first hubby and now mom until my body is falling apart.
In July when that Dr. told me I would only live for 1 year...on days like yesterday, I sure feel like its true, but I won't believe any human. God decides when I go, not man, and I have things to do yet. I hope to be here for the second coming. lol.
Now I have to start looking into getting help for myself, like some cyber-friends have been urging me to do, (been trhying for 10 years but got to keep trying)...to go to the top if I have to...but have not had enough strength for that either. I can only do a little bit of functioning each day. I wish I could afford to hire a secretary for all my taxes, the legal work to get my hubby home, and now to get help for myself. I have not even had a minute or the strength to get gifts mailed out yet. grrrrrrrr!
Wow, such a faith building experience. Now if I could just keep remembering that he is taking care of us and will even make miracles for us! It is hard for me to believe that everything will be OK, because even though I put everything into God's hands, he HAS let some very awful things happen, because that's what life is all about...so even though in my heart I know God is in control...I am always afraid of how hard the next "test" is going to be and if I am up to the challenge.
See? I told you that whenever myu cyber friends pray for me, I feel it, and THINGS HAPPEN! I know the Lord hears the prayers of this group. I have never found so many sincerely faith filled people in one place. THANKYOU THANKYOU THANKYOU for your prayers!
Love you all! Bluebirdy

P.S. Though I cried and prayed half the night from the pain, hurting too much to even get up to get my medicine, hurting too much to get back to the hospital (where they wouldn't do much anyway), TODAY I DON'T HAVE MUCH PAIN! I am ready to help Mom again!!! Usually it takes me a few days to be functional after 2 days of running around like I just had. Yeah I will be hurting when I get back from out of town again, but that's ok if God helps me recover quickly like this time! Oh Lord please help me remember that you love me and are helping me and will continue to help me!

Tuesday, 8 January 2008

Like A Lamb To The Slaughter?

    Oh help. Just weeks after Dad's death, and all I have had time to do is to take mom to the Dr, and E.R. and hospital and stay with her at the hospital, then in between I collapse in pain. I have not even had a chance to get my family's Christmas boxes sent out!
  I took mom out of town to the Dr. today. I still feel so alone in these crisises. I know God is here but I need PHYSICAL help. My brother who lives here has his own physical/mental problems and is not able to help, other brother and sister live hundreds of miles away and that brother works too much to come even to the funerals.
    Mom will be admitted to the hospital in the morning before 9 a.m.  In about 3 days she will have the surgery that the doctors kept warning her she will not live through. I feel like I am carrying my mom into the place of her murder. It feels like she has accepted the surgery as a way to go be with Dad and that way it won't be considered suicide.  If she dies, I will be homeless. I have tried for years to get into cheaper housing that is sponsored by the government.My disability will not cover the price of moving or the price of an apartment. If she lives, I do not have the strength to take care of a surgery patient, or we will both be in the hospital within a day. What a messy crisis.
    I also saw a Dr. today that was on call for my Dr. who is gone for 6 months. No Dr. will take responsibility for me while my Dr. is away, (they say I'm too 'complicated') so mom is getting medical care, but no matter how bad I get physically or emotionally as I try to care for her or if she dies, I don't get any help. Feels like I will die of pain/lupus and other problems before Mom dies, because she CAN get all the medical help she needs. Maybe in July the Dr. that told me I only had a year to live knew something more than I do.
   Thanks for caring, you friends who do care and have been so supportive. Please pray for strength for my brother and I to bear our illnesses, mom's illness and surgery and maybe death, and the period after of taking care of her estate and trying to find a place to live so I won't be homeless.
Blessings,
Bluebirdy
  

Sunday, 23 December 2007

Drama, Drama, Always More Drama!

Three days ago I woke up in so much pain I didn't know how I would finish the urgent things that need done. I was considering going to the hospital. I finally got upstairs and Mom was also very sick and needed an ambulance, so I helped her get ready to go in the ambulance and went to be her advocate (if you don't take someone with you to this hospital, they neglect you.) I was glad to do it but wishing I had someone to take me to the E.R.
They sent her home and told her to go back the next day if she still didn't have a BM. Today is one month from the day Dad died, and today I was sick enough for the hospital again, but again Mom needed to go, so I took her, and they admitted her. This time though, I asked at the front desk if there was any way if I could sign myself in, but be seen in my Mom's room, instead of being separated in my own bed for many many hours. Usually they won't let me be with Mom if I ask that, but this time they did, so I got the medical help I needed while taking care of Mom.
She is talking about death a lot, and if the Lord is planning on taking her soon, I really hope He send a few more angels for Doug and I to bear it spiritually, emotionally and physically, financially. We will both be homeless if Mom dies, because disability income is not enough to live on alone.
So we won't be making any Christmas dinner. We will be opening gifts at the hospital and maybe eat lunch in the cafeteria there. They have turkey dinner that day.I hope Mom is here for 1 more Christmas at least.

Drama #2
My husband was near a building that exploded today due to a suicide bomber. God protected him AGAIN! He got a "percussion injury", where the air that is blasted hits you like a rock and makes a huge bruise and makes you fly through the air, and his ears are still ringing so he might have slight hearing damage. I am so sorry he has to live like that. I want him HOME and safe!...but I would not be very helpful to him right now. Maybe he is being delayed because we can't help each other the way we will need help right now. He will have PTSD for sure, the longer he stays, the worse it will be. Today he said he didn't know how he could stand this anymore, but we just do. We just keep waking up the next morning and we keep surviving.
Maybe he is being delayed by God because no man can live in a house with this much drama and crisis all the time. I don't want to ruin his life and make him unhappy by the hard lifestyle of living with a sick wife. He deserves children and I can't give him that. I'm finished with that. So hard to wait for him, and to wonder why the delay in him getting home.
I have an Aunt who barely ever talks to us because we have more dramatic crisises in 1 year than she has ever had in her life and she thinks its not possible or that we are making up all these things. Her crisis is to get a grass stain on her white pants.
I am SO exhausted, in so much pain, no one to help me or even to help Mom so I can rest enough...one of those times that I feel like I could die soon, but I won't. Lupus is a LONG severely painful existence. Lupus gets worse with stress, shutting down more organs. As soon as it hits the heart or liver or kidneys, you are getting close to death. My brother wonders about him dying soon too because all this stress is making his heart do crazy things...so wouldn't that be weird if all 4 of us died within a year or so of each other?
I thought God sent me a husband for strength to go through all these things with, but if I go through all these things alone, it shows I do not need a husband...but I would like the companionship. Maybe God is waiting until both parents have passed away, so I won't be lonely, but then Mom won't have to deal with living with a son-in-law. She really can't live alone anymore so we'd have to live with her to help her. I totally overthink things and constantly think "why". It wears me out. I'm going to go "lay me down and bleed awhile, then rise and fight again."
MERRY CHRISTMAS EVE-EVE. LOL

Bluebirdy

Saturday, 22 December 2007

PEOPLE CAN BE VERY GOOD!

     My life is so full of "coincidences" that I wouldn't believe it if it was not happening to me. Each one could make a good short story, but no one would believe that all these coincidences happen to one person. lol.
     Last night I was making out the grocery list for our boxing day dinner, which we are having with my sister instead of Christmas dinner. I said we needed potatoes and I needed to call my sister to see if she had a turkey or if I needed to buy one. Just then the doorbell rang. I went to answer it, and no one was there, but I looked down, and there was a huge Rubbermaid square container with  a turkey, turkey roaster, potatoes, stuffing,  canned soup, veggies, fruits, mac and cheese, hot chocolate and more. I have NO CLUE who brought it. It might have been an agency such as the food bank or the church, or it might have been an individual who knew what a tough month/year we have had and will have for a little while yet...BUT WHAT A JOY!!! All the years I had given to other people secretly, it was such a joy to give, but usually I feel guilty about receiving so much. Not this time, since I am not even well enough to get to the grocery store before boxing day.
     We also have been invited to someone's house for Christmas Eve (first time ever) and another house for Christmas Day, but I think I will invite them to our house instead for boxing day dinner. Life is looking up! Maybe the funeral reminded people that we are still here and alive, so we will have more of a social life. I think we will ask more people over for games  or videos or visiting now. Dad was so against having company. Now we can have more people over, so we won't be so isolated, like the prison of the past 10 (ten) years. Thankyou Lord. What a blessing to know good hearted people!
MERRY CHRISTMAS!!
Bluebirdy

Friday, 21 December 2007

Dear Second Family

 
Dear second family, we have another crisis.
     Forgive me for asking for prayer again so soon. I woke up in severe enough pain for the emergency room, and so did Mom, but her needs were greater than mine, so I have been in and out of the emergency room with her every 8 hours or so all day and night and it could continue for a few days. Dad just died 3 weeks ago and she talks as if she thinks her husband can't live without her in heaven and is coming to get her. To make it worse, the government messed things up and declared HER dead instead of my Dad, so her retirement pension, drivers license, bank account have all been cut off, and we could be homeless before we get lawyers, accountants and politicians to make it right again, and I think she decided that was the last straw, she could not face that long expensive fight and the possibility of homelessness, so maybe she is giving up.
    In our hospital, you do not go to the E.R. or even stay in the hospital without someone with you at all times or you are insulted and verbally abused and neglected. I wish I had someone who could go to the E.R. with me, I was in as much pain as she was when I took her. We need your prayers please. I know there is power in prayer and I feel it when others pray for us. I see it SO OFTEN that the other spouse dies shortly after the first, and I just don't have the strength to deal with that right now. We have not even put up any decorations and I have not gotten my children's and grandchildren's gifts wrapped and sent. We will just have to forget this Christmas. No matter how worn out and in severe pain I get from all this stress, I don't have anyone to go with me to the E.R. so I will really need some courage to face the severe pain at home or while in the E.R. with mom.
     Thanks for being here. (Ohhhh I just looked outside, we are in the middle of a BLIZZARD!! I don't even have the strength to shovel enough to get to the car and to scrape off the car to get to the hospital. I guess I jinxed myself when I was trying to find something to be thankful for, and told someone at least I was grateful the snow had melted and I didn't have to shovel or scrape off the car before following the ambulance.)
Thanks so much for your prayers
Blessings, Sheila W

Friday, 14 December 2007

The WHY of my Miracle, and I learned something else.







As this picture shows...I have been being carried by the Lord through all of the storms this past year or more. Struggling, but it would be so much worse without my faith and His comfort.

I just got a phone call from a really spiritual friend of my mom's. She called accidentally, thinking I had a computer for sale! She left a message on my machine. I am so weepy today that I didn't want to call her back, but the Holy Spirit reminded me that this year I have been taught that there are NO mistakes, NO coincidences, that even the mistakes turn out to have some reason, so her call was for a reason, so I called her back. I told her I didn't have a computer, we figured out the mistake, then started talking about other things.


It's been such a horrible day, everything I tried to do or call or write or work on went wrong, and then my daughter emailed me, telling me to send her gifts and my grandsons gifts to her grandmother's house, because she didn't want me to know where she is living. It made me not want to send the gifts, because she has never once sent me a gift for anything, but I don't want my grandsons to suffer because of her cruelty. I have not done ANYTHING but love and support that girl. That just broke me for today.


The lady that called me meant to come to Dad's funeral but went to the wrong church, so she missed it. I told her how angry I was at myself for having such negative thoughts when I am in severe pain or on days like this when I am grieving and weeping. She said that when I am thinking negative, defeating thoughts (almost always when the pain or the grieving comes), that its because that is when I am weakest, and I need to pray for the Lord to please take those thoughts from me until He decides to make me stronger, because I can't bear them when I am so weak. I'll have to remember that. I'm sure others are as tired of my sadness and fears as I am, but now I know its because they hit me when I am weakest, and I need to pray harder during those times for protection from those ideas.


I have been asking why God gave me the miracle of no pain for a week BEFORE Mom and Dad got sick, instead of when I needed it the most. If there was ever a time when I needed no pain and a positive outlook and strength, it was through their illness and Dad's passing and the funeral. Now I can see that if God had given me that week of no pain while mom and dad were both sick, then I would not have felt the emotional strength of joy and that I can do anything, and how beautiful life and the world are, and all the other wonderful clear thoughts that came to me. If that week of no pain would have come while they were sick, I would have still had the emotional sadness and stress, and would not have known how different life is without severe pain. I love learning new things, even if it takes pain to learn them. I pray this lesson stays with me. I hate that I forget so much of what life has taught me because of fibrofog and painfog, and I ask God to keep reminding me.


Blessings to you all, thanks for your love during this difficult time of grieving and fearing that I will lose my husband and mom and everyone else too. (Just a fear of losing others because I just lost Dad.)


Bluebirdy

Sunday, 9 December 2007

WARNING- (Could apply to any invisible illness)


TEN ANGELS
















































Laughing at Chronic Illness

Laugh!


 

Let's face it. . . chronic illness can have its humorous moments if we look for them.

You know you have a chronic illness when...
  • You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.
  • When you hear the term "Club Med" you automatically think of the hospital.
  • You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.
  • Your medical records have to be transported on a cart.
  • To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.
  • Your favorite Oprah program is when Dr. Oz is on.
  • To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.
  • When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.
  • Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."
  • Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.
  • You have a panic attack in public and say, "Praise God this is only the fourth one today!"
  • You're invited to the wedding of the gal who works at the hospital lab.
  • You're child thinks watching you do injections of medication is "cool."
  • You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make
    something up if you'd like."

 

Top 10 things NOT to say to a chronically ill person

See the Rest Ministries/HopeKeepers T-shirt with this saying on the back!

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

 

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

I thought my heart problem was cured, but...

I  guess it's not. I had to get a blood test a few days ago, an arterial blood gas. Its quite a painful test because they have to find an artery instead of a vein by feeling your pulse, and the arteries are usually wrapped in nerves, so when they poke it with  a needle, it just makes you hold your breath in pain. Anyway it took them quite a while to find a good artery, because my pulse was so erratic (irregular), which is what the problem was when I started this blog. My oxygen is still low, but I don't use the oxygen as much as I used to. I should have worn it today when I went out. Its freezing cold out, yet I was sweating from weakness. The problem is, the oxygen tank is in a shoulder pack, and if I barely have the strength to walk around without it, it is much harder to walk around carrying that heavy thing.
     Still they won't even offer me any medication that others with arrhythmia get, as if they are hoping I will die sooner. VERY SCARY to think that "the system" might have the power to let me die soon, ruining the lives of those who love me.
      I still don't think the Dr. knows when I will die. God will decide...but the more stress that happens, the closer I will move towards dying. I don't fear death at all, but knowing the pain that we are all feeling with Dad's death, I  don't want to cause anyone that kind of pain.
      I worry that hubby will get killed over there in the war zone, or that he will be delayed so long that I will not be much of a wife by the time we get together. I am doing everything in my power to get healthier and stronger, but maybe God has other plans.
     There is still the possibility that Mom could die soon. I thought since God found me a husband, that He found me a companion to be with me through these most traumatic times. I guess not. It does make me wonder about being a wife at all, if I  will not be getting any help, and I will be doing all the giving, like in my first marriage. I don't yet have the strength to even live a half way normal life or take care of my basic needs, nevermind trying to take care of someone else's needs who is going to be somewhat helpless for a while and might have PTSD (post traumatic stress disorder) on top of everything else.
     Ok here I go with my bad habit again. I am "what if"ing myself to death. We can't see the future. Its crazy to make yourself sick worrying about all that COULD happen. We need to hope for the best, envision the best, plan and work for the best, and live one day, one hour at a time, enjoying the moment. I used to worry so much about the future that I forgot to enjoy the present. Trying to kick that habit.
     I have really done a good job of taking in every moment and really feeling all of it, which makes life so much richer. Took a lot of reading and studying to change how I think. Hopefully I will continue improving with the way I think about life. It hard enough without adding more worries that are unnecessary.
     We have no interest or energy to decorate for Christmas this year. I think we need the joy that the decorations will bring, but we don't have the strength. The gifts that I am sending to children and grandchildren will be late, which doesn't make me happy, but I'm doing my best.
Blessings to you all,
Bluebirdy

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