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My "well woman" check up revealed my weight has indeed gone up 26 pounds since going back on prednisone two months ago. I am eating too much. But three weeks ago I started walking at least 30 minutes every morning. Usually more like 45. I cut out sweets --- not perfect in terms of success, but very good. I cut down on food to the point that all I ever think about is food or eating or being fat. Or the fact that sometimes the skin of my upper thighs feels like it's about to burst because I'm so fat.

And still I gain weight. So today I had intense pain all day. Fever up around 100 (my normal is 97.6 f). I broke down and ate white rice. I love white rice. It's comforting and, more importantly, it makes me "regular". I've tried bran cereal, more fiber, you name it. The only t hing that really works without hurting is white rice. And it tastes sooooo good with a tiny bit of sugar or a drizzle of maple syrup and then with almond milk poured over.

I now feel like a food slut. And I know that I have to get up tomorrow and figure out what to eat. I don't digest protein well. Never have. I have GERD very bad -- exacerbated by the prednisone. Eating raw veggies is like swallowing nails. Yes, I take Prilosec. But the Sjogren's keeps me so dry that bits of food stick in the back of my throat. Veggies are the worst offenders.

Ok, post just got ridiculously long. I'm just whining again. I'm so fat I'm disgusted with myself. I have no willpower. My older sister is a size 0. She is borderline anorexic. Sometimes I wish I could handle a bit of starving myself. Just can't do it. Of course, she's borderline diabetic, too. But she's thin.

Enough. Got to go to sleep. I'm so tired but hurt sooooo bad tonight.

Thanks for reading this screed,
Sunny
 

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Oh Sunny, you poor thing!

I know exactly where you are coming from. At 5'2, I can't really afford to be carrying extra weight - if not for my health for my height. I've been on weight watchers for 4 months now and all I've lost is a measly 4lbs. At my recent Dr's appointment I could see the disappointment in his face which reflected how I felt too. I've decided to take action and get hold of this and beat it - I have at least 56 lbs to lose to get back to some kind of 'normality'. I, however, feel I have a luxury in terms of how I'm feeling right now - my muscles don't hurt, my knees are ok (ish) and although my breathing is up the spout, I think I'm good to go.

I'll let you know how I get on and if I come up with any ideas I think might help you - sorry I can't be more help right now.

Amanda
 

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Sunny

I'm with you all the way! I lost 6.5 stone on WW 3 years ago, but the last 6 months, with increasing joint pain & fatigue I've found activity difficult, and after a day at work it's just too easy to eat the wrong things.

I too think I need to take control back from this illness - and it's hard!

Today I walked to the doctors for my blood tests (about a mile) - and when I think back 2 years when I power walked a marathon, I nearly cried at how much effort I had to put into a 20 minute walk.

I then got a bus to town, and did a little shopping, came home and I am exhausted. I too need to sleep!

My only consolation is when I'm sleeping I'm not eating!

Keep trying - you'll get back there :)

Lxx
 

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Sunny,

A very long while ago , way back in the land of non lupus I talked to a psychologist about how I felt about running, how I HAD/MUST run when , where and for how long , I HAD/MUST to do it or I felt like I was loosing something or not achieving some goal.
If I didnt get there or did not do it on the day or time I had/must do it I did not feel right about myself

His reply to me was to ask me if I ever read the 'Caucus Race' from Alice in Wonderland.

Read the quote below and I will explain what he meant...


First it marked out a race-course, in a sort of circle ("the exact shape doesn’t matter,” it said), and then all the party were placed along the course, here and there.
There was no “One, two, three, and away!” but they began running when they liked, and left off when they liked, so that it was not easy to know when the race was over. However, when they had been running half an hour or so, and were quite dry again, the Dodo suddenly called out "The race is over!” and they all crowded round it, panting, and asking, “But who has won?”
This question the Dodo could not answer without a great deal of thought, and it stood for a long time with one finger pressed upon its forehead (the position in which you usually see Shakespeare, in the pictures of him), while the rest waited in silence.
At last the Dodo said, “Everybody has won, and all must have prizes.”

He explained that everyone is trying to 'get somewhere' in their own way and in life there is no finishing line.
He told me that he used to run great distances and now accepts as he gets older that he can simply just try to walk fast and still get benefits.
He told me that he tried to play the Banjo and he tried in an obsessive way and that if he really thought about it he could probably enjoy it more if he relaxed and took his time knowing that he will get there eventually.

I think he was trying to say that we do not have to be anywhere in particular in life, we are all just trying to do things at different rates, different times and paces. Some times things do not go as we want but we can still be part of something and be valuable.

At least I think that is what he meant, it was a very very long time ago.

Try not to be so hard on yourself.:)
 

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Hi Sunny,

I read your post and am amazed at how much alike we are with the view-point of how we feel about our bodys. I'm trying very hard to change my eating habits and pay attention to evey thing that I eat and hope it helps my body. I too have "inside" problems, as with constipation, and try to drink more fluids, take stool softeners, which are not addictive like laxatives can be. I thinks the meds we take make it worse (for me anyway).

We can only do what we know to do to change our bodys, I don't think starving yourself is the right thing to do, we all have to eat. Eat your meal, only one serving or plate with moderate amounts, then eat less late in the day, but we all must eat!

I can tell you that it just has to be just as hard being over-weight than it is being under-weight. I am grossly underweight, last weighing was 94 1/2 pounds, I am 5'6" tall, nothing fits me and if it did it would look rediculous so I wear long "tunic" lenght shirts and tops, my jeans I fill-out with a padded girdle, and then I feel like I almost look "normal" except for my skinny arms! A friend of mine once told me she'd love to have my problem and that all fat wemon hate skinny wemon, I hated hearing that!!!! how ludicris!!! I can't help the way I am anymore that she could. Wouldn't it be wonderful if everyone could be just right!!! be we aren't ! All we can do is try to improve but I will no longer beat myself up over how pathetic I look I can only try to change it as best I can.

Please be kind to yourself, you deserve better! and please don't tell me that I can just gain some weight, that would just defeat what I'm trying to tell you.

Best wishes to you from my heart

annada
 

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According to the US standards I am about 90+ overweight...I try to eat right but it does not matter...lupus does make it hard to loss weight...
some proteins are actually good for you while others are not...some veggies are good and some are not...we each have to find what foods we can intake without difficulties...I am now having digestive problems...not sure if it is the meds or not but I did stop eating all "nightshades" (tomatoes, potatoes, peppers & eggplant) search nightshades and read all about them and you too will stop eating them...they contain a toxin that is really bad for anyone with a compromised immune system which includes us...I am starting to feel less flares thru the day and seem to be more balanced out...
rice is good...pasta is good...soups work well...be creative in the kitchen...
take all the things you like to eat and feel you can eat...put them on the counter and start trying different combinations...example: I stopped eating tomatoes a long time ago...so when I make pasta I take things like leftover bacon, veggies, cheeses, hot dogs, chicken or anything I find that I have that I like to eat...I started mixing these with my pasta and boy have I come up with some of the best meals ever...I would love some day to find the strenght to do a cookbook for lupus patients...but still not enough recipes...
confused1, you might need to revamp your entire food intake...try to eliminate the nightshades, and maybe even gluten...you might have to take a day and fast with just liquids and then add things one at a time to find foods that are digestable...I wish I could be there to help you because I know how difficult it is...I am Italian and taking away tomatoes, peppers and eggplant was diasterous but I feel so much better...
Best of luck to everyone out there with this stupid disease in finding foods that you can eat...
 

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((((((((((Sunny))))))))))))))) please don't be so down on yourself. You are who you are "inside" not the outside. You bring such encouragement and are always there for everyone on this board. You are a wonderful person and so very kind. I don't like to see you get down on yourself.

As for the white rice, did you ever try .....ok brain fog here...I'll have to remember the name, it is the white rice that is really healthy for you, very silky? Oh boy this is killing me ! I'll have to get back to you on it, but it is way healthier than regular white rice.

Also the vegies .... I am not a veggie person at all.......but I force them down every day. Since you are having the swallowing problem, have you perhaps tried to blend the veggies up? Like a squash? I did this before when I had my wisdom teeth out and I know it sounds gross, but it does not taste gross, you can add cinnamen or anything to spice it up.

There is something else you said about adding fiber and not being able to handle the bran cereal, etc.? Did you ever try the fiber pills? You chew one or two a day and adds the fiber to you. The doctor that gave me prilosec suggested trying that so maybe that is an option for you.

But keep your faith up and don't compare youself to anyone else. You are doing the best you can.

 

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I'm starting to use some pureed vegetables in meals in order to sneak some veggies into my 3 year old daughter. :) Some of those recipes you really can't tell at all that they are in there. There are a couple of good books out there to get some recipes from - that's my best suggestion for how to get some veggies in you especially given the physical problems from the Sjorgens.

It is soooo hard to control the appetite on prednisone - I hear you on that one! One thing I have learned over the years is that if I eat protein and fat at every meal/snack, then I stay fuller longer and won't get that ravenous MUST EAT now feeling that I would get within 1 hour of eating an all carb/simple carb meal.

But the most important thing is to remember to always be kind to yourself... as kind as you would be to others if they told you they felt the way you are feeling now about your weight and eating habits. Being too hard on yourself perpetuates more bad feelings and just makes everything harder.

(((hugs)))
 

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Hi Sunny,
Maia is so right! I never thought of it that way before. I am also very hard on myself, not just with weight, but I'm very impatient when it comes to my symptoms. I would never dream of speaking that way to a friend or family member, but I'm always mean to myself. We all need to remember to be kind to ourselves. It's very comforting to come onto this sight and know that so many others are going through the exact same thing, and when I feel alone in what I'm going through, I'm really surrounded by many loving and caring people.
Hang in there Sunny! Try and say one nice thing about yourself everyday. It will become a good habit. When you hear yourself saying something mean, stop and turn it into something nice. Take care,

Angie
 

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Oh my gosh I hear you I am extremely upset about my weight too before prednisone and lyrica and amytriptiline I was 30 lbs lighter now it seems that nothing can save the me from the scale I like how you called yourself a food slut that was funny, but don't be so hard on yourself the main thing is that you get better first, I like to give advice but not take it, I have been having back problems so my movement level is about nil not exactly helping my weight issue, I have in my closet before prednisone clothes, after and during and they range from a size 7 to a 16 even some 18 I wasn't this heavy when I was pregnant,
So I think its safe to say your not alone and don't give up you are probably gaining muscle while excercising, sounds good to me!!:)
 

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"food slut", too funny. Me too, believe me. I worked for months to get down 1mg a month from 15mg to 4mgof stupid prednisone. Then I got anemia from the imuran, yes a seprate post all together, and they bumped me up to 5mg, and now 10 of pred, and I still can't shake this godawful weakness and fatigue. And I hate prednisone, except my pain level is much better, thank God. I can't eat veggies or much fruit either. Hugs, Jen.
 
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