I am struggling. I am struggling with my weight. I am struggling with pain. I am struggling with getting out of bed. I am struggling pretty much alone because even the people who care FOR you get tired of caring ABOUT you.
Jeez it seems that in this day and age there would be a cure for the myriad of illnesses that are holding me hostage but no I am forced to take medicines that fix one thing and cause another but it is only an illusion because I am NEVER really better. I have pain somewhere all the damn time and I swear it is lonely. No one around me gets it and it really makes me feel so much worse.
I read many blogs of people who struggle with lupus and fibromyalgia and Sjogrens syndrome and arthritis and scleroderma and hypothyroidism and manage to have a positive attitude and outlook but I don't know why I can't. Do other people have great doctors and friends? I keep going to doctors and they are nice and well meaning but they don't ever have answers...just more doctors and more pills or injections. It is pretty damn hard to feel positive when something is constantly attacking my body from the inside-a phantom menace inside just destroying my hips one day then stabbing the top of my foot the next or shooting fire up my spine or down my leg. So I am struggling with all of this all by myself while my family and the few friends I have left just look at me with pity and go on with their normal lives. I seriously don't know how all of you do it.
I'm sorry Claudia, for the pain you endure on a daily basis. I, myself, am guilty of not knowing how painful it must be and what you are going through. Don't ever forget that you are an extraordinary woman, beautiful inside and out, an amazing mother, and a wonderful educator. You have touched and continue to impact the lives of many students. You have always been an inspiration to me as an educator, and now more than ever, I admire your strength during this battle with Lupus. I cannot say "I understand what you are going through", because I don't. Only you and God truly know the pain you endure with this disease. I can only imagine by the words you use to express how you feel. However, one thing that I am sure about is that you are STRONG. You are a hero to many, especially to your beautiful children. Doctors lean only on THEIR understanding, but God is a Healer. Put your trust and faith in Him. I pray for healing and for a cure for Lupus. May God continue to give you strength. -Karina Soto (Garcia)
ReplyDeleteI had not seen this Karina, but thank you for those beautiful words. Believe me, your words helped. I pray every day I get better and even thought these illnesses have tested my faith, I do believe in the power of God. Thank you.
DeleteI feel your pain! I have lupus as well and every day is a constant battle. Chronic illness is no joke, especially since people can not physically see the pain you are in. It is easy for others to think it's all in your head or that you are really not in that much pain. The only reason I stay positive and hopeful is God. Without God, misery would consume me. Positive attitude = less flares. God = peace in the midst of turmoil and pain:-) We have to work with what we got. Praying for a cure!
ReplyDeleteThank you LaQuanda, I try to see the positive in every day but I am sometimes overwhelmed by pain and it is hard to stay positive. Thank you for your kind words.
DeleteI just happened upon your blog for the first time. You are covering excellent topics on issuers for those with Lupus, and first hand accounts are more powerful than anything the medical world can say. Staying positive is as much a challenge as dealing with the pain. Personally I have only found the ability to remain in a good mental place when I give in to the disease. If I try to fight it - it always gets worse. I know this is not what people want to hear. They want to hear that fighting with help you overcome. Well this is a different kind of fight. It's long term and requires a proper pace to make it to the end. I find the most peace when I let the Lupus be in charge. Yes - It runs my life - not me. But if I cooperate (ie; pay attention to symptoms and give them what they need, eat well, sleep if I can, low stress, etc) I can usually overcome the flair mostly unscathed emotionally. I think that what pains us more than the physical is the emotional and mental issues that no one but a fellow lupie can understand. The random roving phantom pains are some of the strangest symptoms involved. They make me jump sometimes. It seems like no one ever understands what I'm talking about. Even when they want to.
ReplyDeleteI give you props for doing this blog. I have considered it - but have not been willing to put my life out there in this way. Good for you - keep giving this pain a voice. Dont try to minimize your experience for the comfort of others. Track your symptoms and activity. Its a lot of work - but will bring great insight into what triggers some symptoms. I was diagnosed in 1997. I keep a Lupus journal that tracks, food, sleep, and activity - as well as daily symptoms. I have learned a great deal of management options thru doing this. I have found the medical world to be only helpful in emergency situations. They do not live like us - so they can not understand how to effectively treat us in the day to day. Keep up the good work and may you stay healthy. (for us that means something different than others.)