Yesterday was productive. Today I'm in so much pain I can barely function. It isn't the kind of pain you get from over doing, but pain that festers from a lupus flare. We were so blessed with quite a bit of rain yesterday and chances are there today. Unfortunately rain and the wacky up and down weather we've had pushed my flares into overdrive. Such is life with this horrible disease.
So I'm stuck in bed again praying my next door neighbor will settle down and stop slamming doors so I can rest!
I actually had someone tell me the other day that when I had an actual illness to let them know. Instead of responding with "well you don't look stupid. Perhaps you hide it well," I merely walked away. The Bible teaches in Proverbs that if you argue with a fool you are no better than him.
So for that Proverbial Fool I say the following: 1. Lupus is a real illness. It causes your body to attack itself and the damage is irreparable. 2. Lupus causes other illness as well. This disease has spawned twelve new ones. I'm taking fifteen medications, plus Benlysta infusions, to manage them because none are curable. Sometimes I think I rattle when I walk! 3. Lupus will not only send you to the ER and put you in the hospital, it gives you countless doctors to visit. You literally become a professional patient. 4. It Rob's you of a normal life. You reach a point you can no longer function let alone work. Each year something stops working causing you to learn how to cope. This becomes your normal. 4. Friends become far and few between. I've lost several lifelong Friends who either thought I might need their health from time to time or simply didn't care. Then there are those who Get tired of you being sick all of the time and their last minute invitations stop. Get sick and see how yours handle it. 5. You lose jobs. I was laid off because of lupus. Reason being? They didn't want my honourable disease to cause their insurance premiums to go up. Top it off with the fact I was working for a large church at the time. 6. And this disease kills. Many have died from it including author Flannery O'Connor. Her father died from it as well. Causes heat attacks, kidney failure, lung damage, plus a multitude of other things. 7. The weather will literally make you sick! Up and down temperatures, rain, snow, extreme heat, extreme cold. Believe me when I say you have no control when it happens. 8. If you still have family you're not guaranteed they will be there for you. And if you don't (mine were all dead by the time I was 35), you have to find your own strength to get through it. Some days are impossible. Others not. You have to decide whether to spend your life being angry and blaming God, or realize He's the one who loves and cares about you everyday and will provide your needs when a friend is too busy in their own life. And if you are still single, you have to face facts that illness will chase off any potential of marriage. I was engaged twice. Both hit the road because they didn't want to deal with this horrible disease. You find a way to face the truth and go on. 10. Majority of doctors don't listen or care. It is just a job to them When you find one who does, hang onto them! I was stupid by moving out of state leaving behind the best doctor I ever had and paying the consequences by being back on the doctor to doctor trail.
Just remember that every action has a cause and affect. You reap what you so. You learn what to do and what not to do. To this person I say that I am sick. I did not ask for this life, but still know God works all things to good. I'm weak mentally and physically. Stress makes it worse. The stress others put on me is far worse because I can't seem to avoid it. You never know when someone will go off on you. I have suffered twenty-two years with this disease and believe me when I say it is far too real. Doctors predicted I would die within ten years. Let it be known you're not leaving this world until it comes your time. And know this disease is a horribly expensive one. Costs of medicine, hospital costs, doctors, treatments, inability to ever work again can take you down. Before there ever was a Medicare part D, I lost all of my savings and was bankrupt from it. We're talking some individual meds costing into the higher hundreds per month. Now multiply that with fifteen medications.
Systemic lupus is more real than you could ever know. And did I mention total strangers will judge whether you're sick or not? Perhaps that is why I have no patience with people who whine and whimper over things that just don't matter in the long run. when you have to bury you mama, daddy, and only siblings, when you suffer alone in life from an unwelcome disease that you did not cause or ask for, and when you're left to deal with the hard task of life without someone giving you money whenever your hand is out merely wanting something you don't want to work for, then I will listen. Better yet I'll care and help you the best way I can. otherwise remember life IS hard for all of us. Kindness and compassion goes a long way! What a life!
With the side effects, cost, and dealing with this all alone, it is hard. So I've had to return to my Go Fund Me account for help. My insurance covers all but 20 percent. The medication is given by IV once a month. This month there were two treatments. My bill will be rolling in soon and I can't do it by myself. I had to end my treatment one and a half years ago because of cost. Please pass on the link. Life is hard enough. Stress is deadly to lupus patients. https://www.gofundme.com/Need-Medication
My body is still affected by the Benlysta. The best side effect is solid sleep for a few days. The worst is headaches, pain, exhaustion, etc. Will take time to adjust to it. Just hope I can afford to keep the treatments.
I just wasted an hour responding to fools. The Bible says a fool says in his heart there is no God. Some talk just to hear their own words. Unfortunately the Bible also says responding to a fool makes you one as well. I just hate hearing fools attack a pastor's facebook page. Why is it that people who are so angry, disillusioned and don't believe God exists are bullies as well? If you don't believe, fine, don't push your agenda on others. If a train was heading straight for you and someone reached out and snatched you off the tracks, would you be a bully or appreciate the help? And I'm sick of Bible bashers. If you haven't read it, don't speak. I feel the same way about the Harry Potter books. Personally I don't think they're any different than the Disney movies. And yes I have read the books and watched the movies. How can anyone judge something they know nothing about?
Sad to say I'm now aware of the multitude of fools in this world. My advice to you is do your own searching and find the truth. Start reading the Bible, not a prayer book, not a how to book, the Bible. If you don't agree, keep it to yourself.
I had one person say if you use man made medicine you have no faith. Really? Do you wear glasses or know someone who does? Do they not have enough faith? We live in a fallen world. Sin came in with Adam and Eve. This is not the world God created for them. It was a beautiful garden. Man chose sin and the world has gone downhill ever since. Thankfully the end is coming faster than we can ever know. The Bible says when events start occurring like labor pains, the end is near. I look at the news and read the Bible. Both are running neck and neck these days.
Another person said everyone should be angry we have to die. That one hit me hard and made me mad. Then again Jesus had bouts of stating his opinion and his actions spoke louder than words. I have lost every member of my family. It has been twenty years. Lost my health. Yes, I was confused and angry until I learned over time this was part of life. One day I won't hurt anymore and I will dance in Heaven. There won't be a time I ever hate God for my circumstances. I get angry. I get frustrated. I'm human and weak. But I know there comes a time when all of this mess will be gone and life will be eternal.
I finally stopped myself from responding to fools. I realized I was no different than them. Lord forgive me. And Lord please come quickly!
He is the great artist, the great creator. I am so thankful to have His peace.
This morning when I went outside to check on the kitties, I looked up at the sunrise. All I could say was "WOW!" God is the ultimate artist! My vision is going faster than I thought, especially in one eye. Today I am so thankful for the gift of sight.
When the holidays roll around, I always feel more depressed than ever. The loss of family (in my case all of them) is overwhelming enough, but at Thanksgiving and Christmas the loss is more intense. I miss them so much even though many years have passed.
I have found very few people who open their doors at the holidays. When I do find an invitation (which is rare), I find myself feeling more alone in the crowd than I would at home. Perhaps it is because I can distract myself at home by reading, watching a movie, etc. So either answer is hard. Some would never open their homes at this time of year because they see it as a family only gathering. And if you sense someone is asking out of obligation or feel sorry for you because you're alone, you can sense it immediately.
There are many people, old and young, who don't have a family anymore. Many who suffer severely this time of year. Remember them and do something. Random thoughts don't matter. Action does.
Cold temps have hit in Wilmore. Even after putting up plastic on the windows, I can still feel the cold when the temps drop outside. There is no way to stay warm in this apartment without running the heat at full blast. When you have to pay for fifteen medications, plus the Benlysta treatment bill coming soon, and you are disabled, it is extremely hard. You have to make a choice: heat, food, medications, necessities. So I spend a great deal of time under a heated blanket. So do the kitties. Heat and some food take a backseat. The cold affects lupus. My joints are so swollen and painful. I can barely walk across the floor this week. And Benlysta treatment number two is tomorrow. So everything around me is a clutter. Easier to reach things and walk less when it is in reach. My allergies seem to have worsened and I've been stopped up and sneezing for days. Just hoping for a few days of life without pain and being able to stay warm.
Had one super good day with the first treatment. Then I crashed for days. Couldn't function. Barely could get out of bed. Another treatment (number 2 of the month) comes Wednesday, the day before Thanksgiving. Not sure how it will affect me so this year may be spent in bed. Know the 20% cost will hit me before the year is up, but Benlysta is the last medication I can take. I've been through a gamut of meds for over twenty-two years of suffering from this disease. All stopped working.
This time of year is especially hard. Losing my family so early in life has been difficult. While others sit down with parents, siblings, grandparents, aunts, uncles, etc. I only have a memory of doing so. If you still have your family, make sure you spend time with them. Once they're gone, they're gone.
Wanted to say one thing about Donald Trump. I watched an interview done on Fox News website/channel this past Saturday. In it he spoke of his brother who died at age 42 from alcoholism. He has never taken a drink because of it. This gave me far more respect for the man. The interviewer shared how a friend of his heard Mr. Trump tell his daughter he didn't want her drinking when she was going out with her friends. That stayed with him. He also stated he never took drugs or smoked cigarettes.
Growing up with a functioning alcoholic father (meaning he still held a job), I understand the trauma that hits you. It is easy to become ashamed of what you were experiencing at home so you avoided people altogether. I did. Still I was bullied for being a goody goody and never taking a drink, smoking and other things. It just seemed as though what was wrong was accepted more than what was right and today that sentiment is completely on target. I was beginning to think I was the only person in the world today who has never touched alcohol. And I never will.
Mr. Trump shared this story in hopes someone would be affected by it. I was affected. I found out I wasn't alone in the world on this decision. I have more respect knowing our new president will not be under the influence when making decisions.
My father stopped drinking after my brother died. Was so thankful to have two years of a sober father, but grieved the fact I would only have him two years in that condition.
I start back on Benlysta tomorrow. Having been removed from plaquenil after taking it for 22 years, I've reached the end of the line of medicine to treat lupus. The plaquenil caused eye damage. Add to it glaucoma and cataracts on both eyes, they hope removing me from the medication and removing the cataracts will help some. At least they will be able to tell how much damage glaucoma has caused. Today I had trouble reading the election ballot. What will it be like next time?
My greatest concern is the twenty percent of the cost of Benlysta not covered under my insurance. Big worry!
Last week I returned to the retina specialist. He did several more tests to determine the plaquenil damage. I was there four hours, two of which were spent waiting. The new test measured the eye brain connection that somehow clarified the extent of damage to my eyes from medication. They took a string similar to dental floss and stretched it across my eye with the string touching the eye. This was done to both. Hooked up electrodes to both earlobes and to my arm. By the time the day was done my eyes were screaming with pain. All I could think was this brand new machine, the only one in Kentucky, was progress? Lunatic must have designed it.
I'm tired of being a guinea pig. Tired of pills. Tired of struggling alone. Tired of counting pennies just to survive. Tired of being sick and tired. Sometimes I wish I were a child who was adopted by someone who would take care of me. So what do I do? No open doors. No opportunities. Back to taking one day at a time. It is the only way to function.