Liebe Forum, wegen meine Erkrankung (Takayasu Arteriitis -TA-) komme ich oft in einem Forum über diese Krankheit. In diesem Forum habe ich etwas gelesen, was mir geholfen hat, über das Thema Cortison-Gewichtzunahme. Das hat eine Frau geschrieben, die auch TA wie ich hat und die gleiche Probleme wie viele von uns mit dem Cortison. Ich habe gesehen, dass viele von uns diese Probleme haben, und dachte, vielleicht kann das auch jemanden von euch helfen, wie es mir geholfen hat. Das ist auf Englisch geschrieben. Damit ihr das besser versteht, ich erkläre, dass Vanessa ist eine die eine OP an Magen (verkleinerung??) hat wegen zu viel Gewicht. Es ist sehr lang, aber es lohnt sich zu lesen. Sie nennt Corti- prednison,pred und TA heisst Takayasu (die Erkrankung, die wir haben). Viel spass: "I chatted with Vanesa this a.m. before she packed for the hospital. Vanesa going to the lengths she’s going to and putting herself in the danger she’s willing to put herself in has caused me great pause over the last week. I’ve come to a decision that might not be popular, but I feel is very very important to you as my friends and fellow TA patients. This is a discussion starter and a place to speak your own mind and give yourself an opportunity to think about your own behavior. I’m constantly having to re-evaluate my own behavior and thinking and it’s damned hard work to stay on yourself so much. But, in the situation we’re in we must not allow ourselves to become so obviously conflicted with our different behaviors that don’t make any real sense at all. It’s dangerous behavior and we’re here to support and help each other and sometimes that means talking bout something that’s not easily talked about. So many of us can list five things that are horrible in our lives and that list always contains something that is fairly easy to deal with, but those lists inevitably contain the weight issue. It’s one of the biggest problems we face. Before I lost the 60 lbs (thanks to almost losing my leg and life and Ike when there was no food around) I weighed 260 lbs. I’m 5’9 and I should weigh 150-170. Although when Dr. John used the word “obese” it hurt me to the bone, it was true. When one is almost 100 lbs over what they should be that’s obese. End of story. Like it or not. My docs, all of them, refuse to allow me to lie to myself. They will tell me the truth so many times and then rather than say the words, they just stand there and let me say it. Somewhere deep inside I know I’m being a fool and that only adds to the horrible self esteem. These are people I want to please and I’m saying stuff that they and I know is a lie. It’s sorta like when they ask “are you still smoking?” and I know my clothes smell of it and yet I’ll say “no”. Then I feel so bad I’ll have to tell the truth. I mean, if I want them to help me, I can’t not give them truthful information. But, the doctors knew and told me and I came to fully realize that I could not stand on that leg with the weight I was carrying. I would lose my leg and that was just too much to lose. Did the TA cause that? NO!!! I did. Many, many, many and more many people have to take Prednisone. Usually at the first we take some pretty high doses. But, so does anyone who has cancer, or one of the hundreds of autoimmune diseases or asthma or a rash or anything that uses a steroid. You can tell who’s on Pred. Cushings ROUND the face and body. It’s obvious. (Think about the people you see daily or on TV. You can tell Cushings from weight.) When the doses go down the round goes down. Take high pred and turn round. Lower the dosage and the round goes down and is replaced with the fat that you’ve managed to acquire due to the incessant need to eat. Once the Pred is down to 10 or so then the Cushings goes away and we’re back to what we’ve done to our bodies, not what the Pred has done. As far as Pred staying in body if you’re drinking water and flushing your system then the pred will be washed from the tissues. Cushing, once again, is round. Fat is pocket. Cushings is symmetric and fat is not. If someone tells me they are on pred and that’s the reason they are fat, then I know they are fooling themselves. I know Pred. I’ve taken it. So have you and you know too the difference. Prednisone causes swelling round faces and bodies. (We’re not discussing mania) So let’s get Prednisone out of the way. Discuss it with your doctor with an opened mind and accept what he says. Until that happens the easiest answer will be the one you choose. What caused my fat in relation to the TA? Lots of things I refused to consider for years and years. My own behavior caused my fat. I am totally responsible for what fat was on my body. I want to share with you some of those things. You might have other things, but there are some things that are consistent throughout our TA friends and patients. WHAT HAPPENS WHEN WE’RE DIAGNOSED? Well, first thing is we’ve probably been feel pretty damned bad for a long time. We’ve been told that nothing’s wrong and we look good, so it must be us and we must be crazy. We’ve lost use or some use of our very important arms and legs. We’ve had to go to the stores barely able to handle that pain in our legs that feels like somebody has reached into our calves and is pulling out our muscle through the skin. But we push onward. We reach for that brush and sigh because we don’t want to brush our hair… it hurts too bad. We don’t want to reach that high cabinet because if we do we won’t be able to stir the pot on the stove. Though the pain goes away as soon as we bring our arms down, there’s some that linger and we find ourselves with tired arms. But… nothing wrong with us, or so they say. So, we file it away in our fear file because we must be a hypochondriac. But, many many people lose their arms and legs forever. Ours is basically and in most cases temporary. Our activity level is grossly reduced. We sit because it hurts too bad to move. Our muscles feel like we’ve got the flu. Our body sometimes turns cold. We’re dizzy and sometimes feel that pounding in our chest. Our temper is shorter because we are dealing with something we don’t understand or can even talk about at length because “there’s nothing wrong”. We’re simply depressed or getting older. (***sigh*** memories of those days is sometimes hard to remember) We start pulling away because we can’t stand the looks we get when we try to explain something even we don’t understand. So, we’re already on our way to getting fat. We quit the bowling team or softball team. Our golf game sucks because we can swing the club for 18 holes. We don’t go to the gym anymore because it seems it’s just not doing any good and we feel bad anyway. Lifting our children become a burden, but we use what energy we have to do so because it’s just too important not to. But we hand them off more often than we’d like. I use to hold my son in a chair so I could prop my arm on the chair arm. It hurt less that way. Walking from the parking lot to the church or meeting or school or work becomes something we dread and we begin to look for the closest parking spot. It gets so bad for some of us that we finally grab that wheel chair because our desire that we have left to function demands it. We still have the desire to go where we want just not the ability. Then we’re sitting in a wheelchair and somebody’s having to push us which is a feeling that I know I had that was like a bomb. Somebody was having to help me do the smallest thing…. Get from place to place. I don’t know if there is anything bigger to me than the feeling I have when I’m in a wheelchair. How embarrassing!!! And we have to see everyone from the waist rather than face to face. That’s a killer for me. Our programmed mind all the way from childhood is demanding comfort. Well, we can’t really get it from those that love us. Remember… there’s nothing wrong with us. Our significant other heard the doctor say it. So we must comfort ourselves. How can we do that the easiest and best way????? We can eat our favorite food. That’ll fix what ails me. Give me that baked potato or bag of chips. Run into Starbucks for me and get me my favorite coffee. Sugar and starch and fry it all together…. (being a Southerner, that’s a way of life… sorta like ending all sentences with a preposition… all us Southerners do that, you know…) THEN WE FINALLY GET DIAGNOSED: Be it from an alert doctor (not many of those around the family doctor or g/p circles.) After all, it’s not an easy thing to find. Those symptoms can be many many different things. Sometimes, as with me, it’s strokes or loss of kidney. Whatever it is for you, it all amounts to the same thing. We get hit with something alien that nobody’s ever heard of and some will even refuse to believe it’s even real. One doctor has another patient who is early 20’s and her mother and father refuse to accept it. It doesn’t exist. She comes to her appointments alone and her family just sorta plays the game. Some things for some people are so horrendous the mind won’t accept it. Those that love us are the worst. My son to this day, even at 24 years old will not cross into that realm of “mom’s really sick and I might lose her”. He acts as if every hospitalization is no big deal. Even when I was 40/20 and dying and had to be paddled back to life, he accepted it as “oh”… I want to beg him to face reality, but he can’t. His light went out of his eyes the day when he was 11 or 12 years old and I had to tell him how serious this was and how I might leave him. He made me promise that I’d try my best and I made that promise. But, inside me I still harbored a sense of “letting him down”. How bad did I let him down by gaining all that weight? I gotta think about that. Being obese was much more a threat to him and his chance of losing me than the TA. It seemed that I was taking care of those who loved me… friends and family alike rather than the other way around. Sooooooo give me comfort… give me food. Strokes, surgeries, Pred induced hunger, TA fatigue, TA pain, fear, lack of control all require comfort. They make you immoveable and the least you can have when you’re stationary is a Coke. Watching TV become a pleasure that goes so well with food. I find it impossible to even watch a movie in my home or in a theater without butter popcorn, candy AND a drink. FEAR: I don’t think any of us can totally understand all our fears. It would take a professional therapist to take us all the way back to when we started cementing our fears in our brain. But, when your hit with a terminal illness, especially one that’s not fully understood, every fear we possess comes into play. I don’t know about you guys, but there’s a phrase that pretty much describes me when I was diagnosed…. “deer in the headlights”. “What?????” “What does that mean?” “What just hit me???” “Is this the end?” Just sitting at my desk trying to slot all this into it’s proper place would leave me with issues that simply had my mouth dropping and damn near drooling. I spent a couple of years not knowing if I was going to drop dead the next hour. Therefore, I would eat. It made me feel better somewhere deep in my soul. At least I could do that and feel better. Those Starburst hit a particularly needy spot and we won’t even talk about chocolate. The lbs of chocolate that’s gone through my body is am embarrassment all in itself. So we’re scared. We have to go get that chemo treatment and we must stop and eat on the way so at least my cravings will be satisfied. I know I’ll throw it all up over the next three days. But, so what. I’m having Chemo and I deserve it. If they’re gonna put poison in me then I’ll just put something nice in too. I’ll put that chicken fried steak and potato in before they get a chance to get their poison in. If I have to take those 15 medicines every single morning then obviously my mouth is my pathway to wellness. The brain does strange things to our psyche. It doesn’t make mature sense, but we’re dealing with behavior learned as a child and nothing that goes into our brain ever comes out. It can only be better understood as to why it’s so important. Fear is powerful. It’s a necessity for our life, but too often we use it as a basis for our behavior. We’ve just been knocked on our butts and we have no control over anything we feel. We’ve lost our sense of well-being and comfort is essential to us even if it’s just for a moment. TA vs. OBSEITY: The TA comes with enough problems, but the fat on us gives us a much more dangerous life. I’ve mentioned before that it took forever to find someone who would do surgery on me. I didn’t admit it to you, but most of that was because of my weight. We HAVE to have the surgeries and the fix-it’s if we want to overcome the damage TA does to us. Some choose not to, but I demand it. I want my life back as much as I can get and I can’t not fix it. It puts me way too far back into allowing TA to take parts of me. I have to take ‘em back. Doctors saw my weight and I become a seriously big surgery risk. If one doesn’t have TA and has the weight they are a serious risk for surgery. So add that to the TA and it’s huge. I chose to think and tell that the reason they couldn’t find anyone was because the TA was too dangerous… but it was the TA AND the weight. I don’t know if you’ve ever seen what the body looks like inside with all that fat, but it will scare the living daylight out of you. The fat is yellow and literally is suffocating the organs. You should see it around the heart. But, even seeing that didn’t make a big enough impression for me to do something about it. I was just in such need for comfort and I was tired of dealing with things. So that went to the back of my mind. Only now can I think about it and cringe. Fat makes us out of breath. Fat stores our poisons. Fat has to be processed through the liver or kidneys. That yellow fat gets carried through our suffering arteries and simply adds on top of our TA disease. Those are facts. I can’t tell you how much of that yellow stuff got sent through my arteries over Christmas and the holidays. The boredom of being off work is giving me extra hours to eat. I’ve put on 5 lbs. Shame on me. DIETS: It’s a proven fact that diets and stopping eating only sends signals to the body to store. It takes about 3 days for your body to realize that you’re starving it. Therefore, everything you eat after that gets stored for the body and it doesn’t get used for energy or anything else. The diets that are out there are so dangerous for us. If we continue to eat then that fat is simply compounded on top of the stored fat. Hence we gain back what we lost and we gain a bit more. We’re still eating too many calories so we’re continuing to gain weight, AND we have all that stored stuff. Portion control and calories are the only things that have been shown over and over again to work. If one cuts the portions and calories, then the body will accept that and within days one can feel their appetite decrease. How can we do this with all the fears and troubles with TA? Don’t ask me. I still lose the battle over and over again. What I can do now is realize it and chastise myself into getting back on the path. I’m still grossly overweight even with the 60 lbs. But, I feel slimmer and I am. I’m just moderately obese now. Lol It’s about control. It’s about controlling and being knowledgeable about our own particular disease and taking charge of it and knowing where and what’s affected. It’s about not adding things to TA that are a result of destructive behavior. Some of our problems are not TA related, but seem to be because we need them to be. Some of my blood pressure problems is because of weight. I like it to be the TA because that’s a great excuse. But, the bleeding I have is not TA. The b/p is not TA. The dizzy is all TA. All my fatigue isn’t TA. My bowel problems that flare up time to time aren’t TA. My lack of breath and chest pains aren’t TA. I’ve been checked. There’s nothing TA about ‘em. I just choose not to admit it. But, when my behavior causes these things and it begins to pile up and Dr. John shakes his head and says “sorry, Pat, this isn’t the TA”, I’m forced to delve into my psyche and figure out what I’m doing. We’ve got to let TA be what it is and not make it a death sentence for all of us. TA can become a huge monster if we continue to add strength to it, in our minds, by allowing all the things that happen to us due to lifestyle or simply genetic or simply age. We can put it all on TA and we won’t be responsible to a retched thing that happens to us. I find these things very very important because over the years people I know and have been friends with have died. I know things about them and their lifestyles that some don’t know and I know that some did not have to die. It makes me angry and it scares the living daylights out of me that Vanesa has to go have this surgery although I know her life will be better for it. This is an extreme consequence and a necessity to her to find her self-esteem again. I know too many patients who’ve resorted to suicidal efforts because they felt so out of control. Just too much for one person to handle and too much “weary”. The ones who’ve simply given up and just lay down and passively committee suicide are the ones that we cry for the most because in our minds we know the why. Being fat, being sick, and being a burden is just too much not to spend the time working it all out and grasping it. It’s about survival. It’s about adjusting to life and what you’re given to deal with without constantly adding on to the base. If we pile on and pile on it just gets too big. When a friend gives up or refuses to deal with the responsibilities of TA it does almost give me permission to give up. IT’s damned hard and too much is expected. The losses that comes with all the TA and problems we allow gives us that suicidal permission too. It’s a responsibility to ourselves and those that love us and our community and our God to take that which we are given and become better from it, not worse. Most of us can live with the TA and have good lives and see our children grow and our grandchildren and go to their plays and events. We can have relationships with our spouses and partners and lovers. But we can’t do it if we hate ourselves and we’re setting ourselves up. In Baltimore there were over 50 patients. Maybe 10 were overweight. Does that tell you anything? You don’t have to be overweight just because you’ve been or are on Pred. Most people who take Pred for an autoimmune disease AREN’T overweight. Sheri’s not overweight. She fights the same weight battle that everyone fights that has a family and a child to feed and a husband to feel. She eats the foods that she fixes. But she’s not losing weight because of the Pred. I use her for an example because I know her. She feels the same responsibility to her doctor that I do. We’ve got to give that up. We owe it to the patients that we will help in the future. There will be new TA patients, some of them very young that will offer up Pred as an excuse. If we continue to lie to ourselves then we will lie to them and become enablers for them. That’s not what we’re here for. If you need to be stroked? You’ll get stroked for trying and you’ll get a listening ear. But to lie to you and to enable you to kill yourself and go into a depression that bad, is a crime at best and we’re lying to ourselves if we feel we’re helping. If you tell me it’s OK that I’m obese then you’re of no use to me at all. If you stroke my bad behavior then you are not helping me. I’m not sorry this is a strong post. I know I’m taking a chance of making someone angry with me. But, Vanesa is doing something that is so dangerous and so extreme that it is scarey. Her self-esteem is so low that she has to go to this extreme to begin to fix it. Her child is affected. Her daughter is scared to death. I’m sure her husband is fearful. I know many of you are scared for her and will only breath a deep breath when we get the news that she’s out and Ok. This is a consequence of enabling each other and allowing excuses for destructive behavior. But, we are surrounded by enablers. My husband was so impotent to help with the TA that his answer for me was to “take me out to eat”. I thought it was wonderful and so thoughtful. Now I don’t. I see it for what it really is. He didn’t know what else to do. He couldn’t talk about it or make it “my problem” and support my choices, he needed to do something… so he fed me. Thanks Steve. I was wayyyyyy to weak minded and physically and mentally to understand by saying yes, I accepted his gift to my detriment. My son does that now. And my friends do it. And the circle continues. Please think about what I’ve said here and talk to your doctor about it. When he tells you the truth listen and accept it. What you do about it is your business. They went to medical school and know alllll about Prednisone. They know it doesn’t make you fat and you might want to think before you embarrass yourself by trying to convince them it is. It’ll change your body shape, but it doesn’t continue to cause that hand-to-mouth disease. Did you know that the sugar from fruit is more satisfying to the body than the sugar in candy? That sugar comes and goes fast, but fruit and natural sugar stays with the body? If you cut out candy and replace it with fruit, after a few days your body will begin to crave the fruit sugar. Fact. Most of our favorite foods are not that fattening. It’s just that some we eat so much of that they become a problem and become a steady part of our diet. NEVER deny yourself when you have so much to deal with. Give yourself the food you want and crave. Just don’t have it all in one meal…. Lol I say as I put the second spoon of sugar and a bit of chocolate in my coffee…. I’m the worst…. Jeez. Will I ever get it together?"