Well, this blog is now officially a roller coaster. Up, down, up, down. When I started it, I thought I could be all strength and encouragement and powerful...but it has not turned out that way. This is not how I thought I would deal with this. I guess there are lessons to be learned from illness, and here is where I record those lessons.
This blog gets the worst of my personality and thoughts. When I am with other people online, in emails, chatrooms, messenger, I am a joker and positive and I am the one comforting others, so here is where I get the pain out of my system.
Despite everything I am going through, things could be worse if I was not a Christian. There is a peaceful joy about being a Christian, and that is that promise that the Lord will always be with us, comfort and strengthen us, no matter what we are going through, and that there is hope of things getting better, and that we feel the comfort that passes all understanding. These are things that non-believers will never know.
Wow! feelings can change so fast! Yesterday I was so encouraged, felt so hopeful, as if my new life was starting soon and that it was going to be great! I felt so strong emotionally, even though still weak from the pneumonia. I was thanking the Lord for all the people he had sent me lately to teach me, to help me see the light through my dark pain, and thanking Him for all the positive media that I have been sent lately to help me see life in a new way. I don't have much energy now for more study, but when I do, it's all positive. I had been only reading/seeing positive websites, TV shows, radio talk programs, magazines etc. and was on the upswing.
Today I feel like I have been knocked down the mountain that I had just struggled to climb.
I'm not sure if I told you about another disease I have, it is called "Trigeminal Neuralgia", also called "The suicide disease" because it is the worst pain a human being can feel. Please look here:
I bear that along with organ damage to almost all of my organs from lupus, and fibromyalgia, and multiple other problems.
My regular Dr. gave me enough pain meds for the 6 months he would be gone out of the country, and that ended March 25, so I have been cutting meds in half until my Dr. would get back because he is late. We don't know if or when he will return, because he talked about retiring, and he has not even contacted the clinic to tell anyone what is going on. This week I was too sick to drive 30 miles to his office to see the Dr. that is taking his place, so I called and asked him to call my pharmacy to refill my meds, which has been done many times in the past. His nurse has tried to solve the problem between me and the Dr. on call and the pharmacy since Tuesday. Finally I ran out of meds and I decided I need to go talk to this Dr. face to face so he knows I am not a drug abuser, I am not doing anything wrong, as he insinuated over the phone for 3 days, (Is it really a crime to have pain?) and to tell him I just getting over pneumonia, was given 1 year to live, and I am 9 months into that, and I am struggling with my Dad's death, trying to support my terminally ill mom and mentally ill brother, and trying to stay strong enough for my husband to come home to a whole person. I told him I don't want to increase my dosage, I just want to keep the dosage I am on, or even lower it a bit if he has a big problem with my regular dosage. This Dr. said no, he would not help me. He took my Mom on as a patient and gave her MORE than she needs of pain medicine because she is 75, and said that if my Dr. doesn't come back (he is thinking of retiring), then I am just straight out of luck and he said he could guarantee that I would not be getting any more pain relief because I am too young. If my mom and I are both dying from lupus and heart/kidney failure, what sense does it make that the 75 year old gets the pain relief but the daughter (me) that has to keep the house running doesn't need or deserve relief? Mom thinks we are all just going to die of neglect, like Dad.
It's still ironic that even in a third world country, I could PAY to get treatment, but here, you can not pay, so you can't even pay to get some treatment! So now I understand why some very good, honest Christians, good citizens, resort to buying painkillers from neighbors who get extra, or from more illicit sellers! There's just no choice! I also now understand that there IS a breaking point where a person who KNOWS that suicide is a sin, just can not bear the pain anymore, and takes his own life. I guess I am getting more understanding/compassionate, less judgmental in some ways.
At this point I feel like if you are young and in pain, you have no right to be taking up space on this earth. He added a few more insults and pretty much made me feel like I have no right to take up room on this planet if I am young and in severe pain, and I have no right to ask for help, and no right to even complain about the pain.
He insinuated that ALL my life's problems were caused by the pain medicine...which is wacky because most of my life problems came before I started taking pain medicine, and most of my life problems are caused by PAIN! Not by trying to get out of pain! Even my ex-husband got upset as soon as I started seeking for pain relief. He worked me so hard that I was in severe pain, but when I tried to get pain relief so I could continue to care for his home and family, he would not stay with me. I guess he would rather have had me in excruciating pain. He never did much to help me around the house or with the kids. I wonder how he thinks anything would have gotten done if I didn't get help for my pain?
I explained that I don't WANT to be on this medicine...this was the last resort. I don't take it just because I like taking pills or something. I tried every possible other medicine combination before I was put onto this medicine. I was put on this because my heart stopped from the pain, and the Dr. decided that it would be better to be alive and on pain medicine, than be dead before I was 40. I am addicted to being out of pain and addicted to life! Not addicted to a drug. If I wanted to die, all I would do is STOP taking my pain meds, and soon I would be in critical condition, or possibly my heart would stop from the pain again.
This substitute Dr. pretty much said he didn't care if I died, and said if I am flat in bed now with the morphine, then if he takes it away I will still be flat in bed, so what's the difference? I said "the difference is me screaming in pain and wanting to die, and my family suffering as they watch that; as opposed to helping people on the computer 12 hours a day, and looking forward to a life and a future! Also, my worst weakness now is the pneumonia, which will pass, then I will be stronger, so I can help make my life better. Without pain control, I will be rotting in bed, and my mom is not able to care for me, and so far I can't find any Dr. to take care of me. It would be a living nightmare for my whole family!
Most people in the world, and all doctors that trained more than 5 years ago, seem to not understand the new pain control research.
It shows that people are GROSSLY under treated, and shows that people who take the RIGHT amount of pain medicine for their severe pain do not get high, they do not get addicted psychologically. Their body gets dependent on it, so we will go through suffering if we stop taking it, but it's not the kind of withdrawal of people who get high. All the medicine does, is neutralize the pain in my body. This new science of pain control is being taught in all medical schools.
Also, synthetic opiates such as Vicodin, Lortab, Lorcet, oxycontin, etc. are much more addicting than morphine. When I lived in the USA I took a weak dose of hydrocodone, but I really hated the buzz in my head that everyone else LOVES about it. When I got to Canada where they don't even have that drug, I was put on low dose morphine, because every other pain killer was tried and caused severe side effects or didn't work.
This substitute Dr. is from Africa. He said "There is way too many painkillers being passed out in this country." I thought to myself "I thought that's why God made it, was to help people in pain, and when I think of your country of Africa, where every third person is dying a horrible painful death of AIDS, and not even those people get pain control, then when you compare that to the compassion of Canada, then I can see why he thinks we have too much "PAIN CONTROL". Maybe he thinks people are not supposed to get pain control.
I don't know what I did in my life to deserve such a death, without seeing my grandchildren or children for 11 years and without even having my honeymoon yet, and now looking toward making my mom and brother and husband suffer as I suffer without any medical help or anyone to even hire to help me clean my room or do laundry, etc. I just want to crawl in a hole...and I'm so ashamed of feeling like I need support yet AGAIN, and I feel like an emotionally abused wife, who has to get abused over and over and over
and has no way to get out of it, and when I need help instead of abuse, I am expected to endure insults and neglect and abuse when I don't have the strength to defend myself.
In the USA doctors would not get away with this kind of behavior, but in Canada they can do whatever they want because there are so few doctors, that no one else will take them. Most doctors here even have a list of things they won't treat, so if you develop one of those illnesses, you just suffer with it, because you can't get another Dr. very easily.
Now I wonder if that Dr. that told me I have 1 year to live (last July) knew that, because he knew the gov't had cut off medical care, and that's how long I would live without treatment, in the condition I was in.
What a mess. It seems like this medical system thinks I don't deserve medical care, don't deserve to ask for emotional support because I have asked too much already, and I'm ashamed of needing it and SOOO tired of being abused again and again and again like an abused wife who has to keep going back, getting abused when I need help the most.
We have started talking about moving to another country, but we don't have the strength to go through immigration or to move.
I'm so confused. Did God have my first husband leave me, so that I would be sent back to Canada so I can die in my mid 40s in loneliness and uncontrollable pain?
I'll just go have a nap and try to pray myself out of this hole. Thanks for being here. For cheerier news, look below 2 blogs, the blog under the cartoon. That is all the good things that are happening right now, which I DO APPRECIATE. I don't know what I'd do if I had to be Mom's nurse right now too. Yes I do. She would probably die in the hospital from mistakes and neglect because I am too sick to be there with her. Maybe the Lord should just take all 3 of us to be with my Dad, so none of us has to suffer the loss of the others.
I WANT a new life with my husband! I want to experience EVERYTHING, go everywhere, see every culture, see, hear, taste, feel new things...but I can only do that if I can keep the pain control I have been getting. If I lose that, life is over, unless I get healed, and since that has not happened yet, it seems obvious that it is not the Lord's will to heal me. I know he CAN, and if its his will, he will do it, but in one of my visits to the spirit world, I was told straight out that the Lord would help me with my illness, but I would not be completely healed, because there are important purposes for it. One is that others who know me will learn things from it. I don't know the others yet.
My husband was SOOOO encouraging and loving and supporting when I got home from the Dr. today. He coincidentally called about 10 minutes after I got home when I was still crying and feeling beat up and hopeless. I was ashamed for telling him my problems because he is going through a war, then he said "Honey, we are BOTH going through a war in our own ways. One is as bad as the other. It's ok if you tell me what you are going through." He is such a gift from God. I love him.