Today I want and need to bitch and whine. I have spent two days in bed this past week and feeling very weak,tired and have pain which is a level 5 but for most others it would be much higher. When one is in chronic pain the number system of grading pain levels does not apply, which sends a mixed message to the Dr.'s. They hear a level 3-5 on the particular day you are in clinic and consider it "mild", but what they do not take into consideration is that the pain can go from 3-8 in an hour and when one has a higher tolerance this number is irrelevant. I read the Dr.'s reports and they tell me the lupus is inactive, and thanks to the daily dose of toxic meds which control it, I am "basically" symptom free. What they do not take into effect is the damage and activity I feel no matter what the lab tests show. This has been proven. There are times when labs look terrible but we patients feel great and vise versa. Most days I see our Dr. I do feel OK and I put on my happy face so they do not think I am weak or a whiner. That really irritates people.
So why do I want to bitch and complain? I feel it is harder emotionally with the lupus being virtually inactive, while on a ton of drugs, than it is to be in a full fledged raging flare. At least when I am in a bad flare I can validate how I feel. When I am in limbo and the meds are keeping the activity generally low I feel that Dr.'s and family-friends assume I am well and therefore can go back to normal activity and that all is good. This is not true. Plus the damage that has been caused to bones, skin, kidneys and other organ systems is already done. There is nothing to be done about that. I can not take pain meds, which would make life so much easier, and on the occasion I bite the bullet and do take pain meds I suffer through the hellish side effects, but also realize what it is like to be virtually pain free. I guess even I do not realize how much pain I feel until I numb it. But what is more frustrating is how, even experienced Dr.s, will say I look so healthy and give me a clean bill of health and call my pain or symptoms "Mild"....Mild to who? I have a friend who is a Dr., not practicing, and has lupus. She did not understand what patients went through until she had the disease herself. What a teacher she has been. She knows that Dr.'s really can never fully understand what we patients feel. It may seem mild in comparison to life threatening symptoms, but it is not mild to spend two hours napping daily and at least two days a week in bed, having sleepless nights due to pain, feeling so tired at times I can not walk, all the nasty side effects and damage from toxic drugs and so on. The emotional toll of being in this limbo is worse than facing death. The ironic part is that I want to be seen as healthy but I want my Dr.'s to truly understand and write it down as it is not just report that day I see them but the entire picture. Take the time to acknowledge spikes of pain up to 8-10, sleeplessness, weakness, pain upon doing anything physical, bone decay and pain as a result, missing out on much of life's experiences much of the time and trying to look good and healthy because that is what our society expects. We want and need to be heard and understood not blown off. I have great Dr.'s who I respect and care for, but I still do not feel they understand. They are also victims of insurance and cost effective medicine. They have fifteen minutes to spend with each patient. That is absurd!!!!
I want to be healthy and positive but I also want people to know what I go through so they can empathize a bit. Imagine having the flu your entire life with arthritis and bone loss. Imagine wanting to sleep and forcing yourself to get out in the world with a smile to be a positive role model and to be "normal". Just imagine for a moment then tell me if it is "Mild".
Thanks for listening......whoever reads this. No worries I will be happy and feeling good soon, just let me feel it.
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