Cooking with Arthritis

Do you have one of the 120 forms of arthritis? Have you ever been told you could not possibly be as sick as me? Let me explain. I usually do not write articles like this but I have been talking to many who have lupus, Rheumatoid arthritis and other chronic auto immune systems diseases over this past year, the topic of conversation is I am so tried of people telling me I don't look sick or my favorite statement is from fellow arthritis survivors, you could not possibly be as sick as me. I have been told by literally hundreds about how bad they are hurt after these statements have been made. I can relate. I have heard it so many times myself. Why would someone say such things? On average most do not. Unfortunately; there are those that just blurt it out never thinking twice about what they have just said or how the person on the receiving end feels. But here is the problem from those who do not have arthritis or maybe they do but not auto immune arthritis. They simply do not understand the disease. It’s really not their fault, if they don't have it and know no one who does have auto immune arthritis why would they know about its effects. Yes, they should have enough class not to say rude things. But open mouth and insert a big fat foot. Also if the person they are making these statements to do not have visible damage yet, its really hard for the person to understand. Most people believe what they can see and touch, when they see an attractive individual standing in front of them they just do not get it. There first thought not knowing the person is she or he does not look sick. Frustrating as it is it happens on a daily basis and in turn it hurts the person with the disease feelings at the very least. The sad facts are that arthritis is the leading cause of disability in this country and there is no where near enough awareness about this crippling disease. Auto immune arthritis affects Men, women and children it doesn’t discriminate against age, race or religion. It comes like a thief in the night and steals the quality of life of the affected person. I will tell you how you can help later. Let’s get onto the next statement. You could not possibly be as sick as I am this coming from someone who has the same disease as you, why? For me this one hits home. I have had severe active RA and four other forms of arthritis for over 25 years most of my doctors say my whole life. I also was born with a birth injury to my right arm leaving me with deformity 4” shorter than the other arm and almost no use of the arm. I can not lift it any higher than my waste not straighten it out or turn my arm or hand upright. I have visible damage, severe damage, twisted hands, fingers, toes arm and back. Swollen knees and shoulders that never go away and never will. So why would someone say this to me. They can obviously see the damage. Because I live an active life again, I still have active severe RA but I do not have severe pain anymore, I am one of the lucky ones. For whatever the reason people have the need to say these things it hurts my heart and others like me. Let me explain why I do not have the severe pain anymore for this reason after many, many,many medicines My physician and I have found a medicine and plan of treatment that works for me. As a matter of fact it has worked very well for me for almost five years now. I have my life back, something I never thought was possible . Even though I am not 100 % and have some level of pain daily it’s bearable pain and manageable. Will this biologic drug be my miracle that lasts forever, who knows? Once I began to feel better I was able to use products that help manage the little pain I had left. As an example I use the bed buddy hot and cold packs for those days the pain is worse. I starting using other parts of my body to complete daily tasks that my damaged joints can no longer perform. I exercise rather it be in the water, walking or while I unload the dishwasher, I try to keep moving. For me if I sit all day I still get stiff. I balance rest and activity to ease pain. I do understand some of you can not walk; I could not walk for well over a year, I was confined to a wheel chair. I would never say I know how you feel because I do not. I can not feel your pain as you can not feel mine. I can however offer you a shoulder or an ear when you need to talk. I surely have great respect for you and am very compassionate to your condition. Sorry off track again, I revamped the things in my home to ease the stress on my joints. I am a very active advocate for arthritis. I believe a busy mind is good for chronic illness. Will it take the pain away no. But it’s important for me to stay busy. I am a dweller , if I keep my mind occupied I personally feel better. Listen; I don’t want anyone to misunderstand what I am saying and it does not mean I have not have had my fair share of hell. Believe me I have been to hell and back. I went through flares where I could not pull my own pants up or down nor wipe myself; I lost any and all dignity I had. I was in a wheel chair for over a year. I had flares where I could not feed myself, lay down or move my head for days sometimes weeks on end all I could do was cry the pain was unbearable on morphine . When my fingers were twisting I thought I would lose my mind the pain was so bad. One day I met a man who’s damage was the worse case I had ever seen. He told me once the joint was done twisting I would have no more pain in it. Well; I thought he was plum off his rocker. It hurt so badly. I never saw an end in sight. Low and behold 16 years later the joints that are done twisting, at least for now, no longer hurt. I must say they are not a nice sight but pain free. I truly thought I was going to die for many years. My life spiraled out of control. Ever medicine I tried did nothing a handful may have taken the edge off but not enough for me to function. I was so young and so depressed. I am not a doctor or fortune teller, I can’t predict the future what works for me may or may not work for you. I talked with a woman yesterday who was so down by another’s words that it compelled me to write this. We are all in this fight together rather our disease is active, visible, not visible, in remission, doing well, not doing well, it does not change the fact we have auto immune arthritis and to date there is not a cure. I am in it for the long haul good or bad its my disease, my friends, my neighbor and the person I have not meet , I will continue to do everything in my power to bring awareness to auto immune arthritis and do my part to find a cure. . Please if you are reading this and you are one of those people who have said you don’t look sick or you could not possibly be as sick as me, think before you speak, you can not take back those hurtful words.

What a perfect post. I have been on both sides of that coin. I forgive those who say such dumb things but I don't forget. I am easier on those who do not have AMA. But when a fellow arthritis says I am not as sick as them It hurts. This is not a game , guess what no one wins here !

FANTASTIC!!!!......I couldnt have said it better myself.

Some people are cutting, we all cope with pain in different ways and the disease progresses differently in everyone. Just because we dont look sick doesnt mean we arent sick. Heres a tip, try looking in peoples eyes, they are windows to the soul and you cannot hide what they show.

Well Done Melinda, My Heroine!!! xxx

Good Health, Wealth and Happiness.

I can't stand for those statments to come from someone's mouth . But its the worse when a friend that has auto immune diseases says it. Perfectly said, Mel... This is not a game to see who has more pain or damage. If somone is that samll minded thats sad.

Been there heard that one and yes, it hurt. I get tired of it. But in their defence I do not complain so how would anyone know, mmm maybe I should but I won't. I am being silly today so pay me no mind.

Sounds like the person in the second statment is not a friend, sounds like he or she may have jelly on the face... I aree people should think before they speak

until swan thumb , no one ever thought I was sick , great post

Wonderful Post ! Melinda you rock !