More Questions and Answers
Oh my, you all can ask some tough questions and I will do my best to answer them as fully as I can. This is not something I normally write on as I do not believe in focusing on what is wrong with me but on what I can do to make life better and on solutions to problems I have with my health.
1. What is wrong with me?
You mean besides being wacky? LOL. I will answer this but I do not want pity nor do I want you to see only the things I have wrong and not see me. Because as you know, I truly believe I am not my diseases or disorders, I am danLrene…with many sides to me as seen on the right side of this blog. I already answered the person that asked this but this question leads to the next question so I am posting the answer here.
I have auto immune disorders. Yes, that means more than one. I have Sarcoidosis, Fibromyalgia, Sjorgens, auto immune pernicious anemia and Rheumatoid Arthritis which is also an auto immune disorder and I am on treatment for it. I also have COPD and have had for years and am on oxygen 24/7. I have degenerative disc and joint disease. I have had back surgery on the lower spine and have had in the past couple of years radio frequency ablation, which is burning the nerves coming out of the spine to help with the constant pain. I suffer with chronic pain from degeneration of my spine, a genetic flaw in my spine that causes our spine to curve more than normal , stenosis of the spine and neuropathy. I have had three vertebrae fracture during the past ten years. And just last week, I had 8 trigger point injections in my back to try to help the pain until the doctor could do a OMT to take the pressure off the nerves. I will be having RFA again in the near future. I also have a knee that was badly injured and requires me to wear a brace to put any weight on my right leg. I am in a hospital bed with a special gel mattress a large part of my day from the pain and use a power chair the rest of the time but I am fighting to bet back up on my forearm crutches. Even with pain meds and other treatments, I have pain that never goes below a 5 with meds and usually stays at a 7 or 8 causing me to be bed bound almost all the time.
I have neuropathy which is another cause of my chronic pain. Chronic pain is the monster under the bed. It loves to creep out at night and make sleep impossible and due to my stomach issues which are below, I can not take meds for the neuropathy and use a gel anti-inflammatory gel to help relieve some of the pain. I have balance issues from it, feet and calves that feel like they are on fire, weakness in my legs and arms and hands. The neuropathy and the spine issues have caused me to have bladder weakness as the nerves affect the signals send to my bladder. I have stomach and bowel issues ranging from GERD to IBD to metaplasia in my stomach which is where the cells have changed structure and can turn into malignant cells. I just finished treatment for H Pylori, a bacteria infection in my stomach which required high doses of antibiotics. All of the GERD issues caused so much scar tissue that I have stricture of the esophagus and cause swallowing problems.
I have seizure disorder which was causing me to fall a lot and injure myself. One fall tore the rotator cuff, pulled my collar-bone, 8 ribs out-of-place and rotated three vertebra. Once they got me on seizure meds, the falling has dropped off. I have osteoarthritis, osteopenia, osteoporosis, sarcoid arthritis and the auto immune Rheumatoid arthritis. My bones have thinned significantly and falling is very risky for me because I could easily break something. I have Hypertensive Heart disease, Blood pressure issues, tachycardia and brachycardia and on medicines for all. I have sleep apnea and must use a CPAP machine when I sleep. I have a blood clotting disorder and take medicine to thin my blood to keep me from having another stroke. I also have diabetes for which I take meds to keep it under control. I have chronic cystitis and tumors in my kidneys for which I have had a partial nephrectomy to remove the largest tumor at the time and kidney surgery again to ablate (cut off blood supply to) a large tumor a year and a half ago and will have to have this done again in the future as the tumors grow. And I suffer with chronic fatigue. I also have hypothyroidism and Hyperlipidemia And I think that may be the end of the list but I am not sure. I live on a huge amount of medicine but as long as it keeps me going, I will take it.
2. How do you keep so upbeat and happy?
I imagine anyone reading the first question would think I would be the most down in the dumps, miserable person but I am not. I am happy because I choose to be. It is that simple. Life is a continual series of choices and the most important one should be the choice to be happy.
Yes, I have a lot of medical problems but I refuse to focus daily on all that is wrong. I get through the tough times and enjoy the heck out of the good times. No matter how bad it gets, whether it is me hanging on to my “blue bag” sick to my stomach or me sitting in my power chair, I have always been able to find something good to focus on. My son, who is my caretaker, says I am the only person he has ever seen that could be throwing up one minute and look up and smile when it was over. I am on the “Long Term Care” program which means you are so sick that you can not take care of yourself and my son is a paid family caretaker and I have a caretaker that comes in several times a week to help with bathing, shampooing and doing my hair, cleaning, laundry, etc. This program is to keep people who should be in a nursing home in their own home by giving them the appropriate help they need. Requirements to be on this program are quite strict.
What keeps me so upbeat and happy is my faith. I can see some of you rolling your eyes and thinking “Oh a God freak.” and maybe I am by your definition. All I know is my faith in God, my faith in that He will provide my needs, that He will not forsake me and that He loves me so much that He sent his son to die for me keeps me going. I have had people ask me to prove God is real and my response is “that is what faith is about…believing in what you can not see”. I do not think anyone has to “Prove” their faith to anyone no matter what their faith is. And so I do not “prove” my faith in the way they want. I prove my faith by living my faith even in the throes of all this sickness.
How do I stay so happy? I stay so happy because I discovered some time back that my happiness lies within me not outside me. It does not lie in people, places or things. There is not enough money to make a person happy. Yes, money can bring joy but joy passes once the excitement passes. People can bring us joy but they can not bring us happiness and neither can places. Happiness is a place of contentment within us that stays no matter how bad it gets. It does not mean we never get sad at loss. I cried when my godfather died a few weeks back but my happiness did not disappear because my happiness was not centered around him.
And so, the same is true with my health. My health does not make our break my happiness. If I have good health does not mean I am automatically happy. And so by the same token, being chronically ill should not be what determines that I am unhappy. Do I want to be chronically ill? No, but I am not going to let being chronically ill take any more from me than it already has. I have two choices….and that is either become the victim and constantly complain about all my health issues or become the survivor and look for ways to make my life better and I choose the latter. I do not spend every minute of every day talking about my health..which is evident as I do not normally post about my health on here. When people do that they drive people away and lose minutes that could be spent with loved ones or doing things they love. Minutes that can never be gotten back.
And there are answers to two of the toughest questions that I have gotten so far. I hope that it answers it and that it gives insight into how I choose to live my life as a chronically ill person. I choose happiness, I choose looking for the good and not dwelling on what I can not change and I choose be a fighter.
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