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Thread: Need advice PLEASE. Feeling desperate

  1. #11
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    Hello Melissa,

    You are much welcome...

    I don't think there is a such a thing as a Lupus Diet, but to eat things that may not contribute to inflammation, yes..from my research. Items I listed in my other post. Lower fat regime. Proven, I don't know, studied, yes. I do know when I don't eat clean I don't feel too swell.

    Me, I eat my vegetables steamed or blanched. I believe they still retain almost all of their vitamins and minerals. If not, it is too rough on my stomach to eat daily. There are others who would say cooked food is harder to digest.

    I do admit, chumping on carrots, rutabaggies, broccoli raw while preparing. But for me I wouldn't couldn't eat a complete raw vegetable diet.

    I would think a continuous raw food diet, may create bowel irritation in some form.

    Moderation in nuts..too much fat consumed otherwise. Handful is plenty a day. Almonds, pumpkin seeds, ground flaxseed tablespoon..walnuts. Peanuts, pass.

    Fruits, pompegranates, grapes, berries, apples, pears, ruby grapefruit (unless you are on anit-seizure meds), plums...food like that.

    I would just keep in mind, avoid, additives, preservatives, food dye...sugar..and avoid too much red meat if you do decide to be a flesh eater.

    I am not the healthiest myself. I am 25 lbs. overweight put that on after dosing with scaryroids. Sedentary lifestyle due to the heavy load Lupus is. Perimenopause too. So, I too am trying to adjust. I always ate pretty healthy as a whole, but I have to change up something. Add more exercise or lower my calories even further. I am not ready for either. My attempts haven't been good enough to make a difference.

    I am hoping Lupus will turn around and give me a break so I can get myself back on track to so I can be a physically fit self . I know I probably will never be 110 again, but I could handle 120...135 for me is too heavy as I am only 5'3". I lose 5, gain it back...

    When I was at the doctors the other day, the nurse asked me if I wanted to take my shoes off and rest my purse before she weighed me. I replied, Why? I am fat. What's another few more pounds, a lower number isn't going to make me feel thin nor a higher going to make me feel fatter. A few years I would have said different. And mentally I would have calculated the weight of my clothes to mentally subtract. Weird I had an ED.

    Pop into the library or a Barnes & Noble...a book store an skim the contents of those books I mentioned..maybe one would be right for you.

    The weekend begins now..enjoy,
    Oluwa

  2. #12
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    Oluwa, you are the book of knowledge! Thanks for all the info. I am picking up my plaquenil today. Something that you said rang a bell. I think my doctor too primarily deals with older patients with RA. I have been seeing him for 6 years now and since he has put me back on my meds. I will stick with him. I have a fear of going to another rheumy and them telling me that there is nothing wrong with me and my blood work is just a flooke. I have had some bad experiences with doctors. I had a mass in my chest for 7 years prior to Melanoma cancer. The STUPID radiologists NEVER saw the mass. Then, on a routine x-ray I found out that I had a mass (thymoma) which had to be removed with open chest/heart surgery. My nightmare of APS/Lupus happened after the HORRIBLE surgery/recovery. That is just one of several mis-interpritted tests I have had in the past. So, I have doctor phobia.

    Have a great weekend and thank you again. PS- I look disgustingly skinny so its not always a good thing to loose weight. At least with you, g-d forbid something healthwise happens to you, your body has fat to live on.

    Hugs,
    Melissa

  3. #13
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    I enjoyed your words..chuckling..
    At least with you, g-d forbid something healthwise happens to you, your body has fat to live on. I'll share my fat if I could. Will 10 pounds do?

    I am so sorry you had to go through so much. How is your skin cancer today? Did you have to have your Thymus removed too?

    I know your apprehension with doctors, wrong diagnoses and etc. I went through the spin with my first back surgery. I lost faith, but I still jump back on the merry-go-round for another spin. Sometimes I've only had to take it around once. What keeps me going is..saying..wow, this could be the day. I could just feel better...with such great hope. I get let down too, but faith and hope keeps me going.

    I did indeed have a good weekend. Purchased plants galore..now who is going to put them in. Maybe my husband this coming weekend when he flies in..or perhaps I will have to hire out. Ah, if it was a plant or two I would do it but I have over a dozen trees and shrubs. Sounds exhausting just typing it.

    Have you decide what type of nutritional program to follow? How has you week been thus far?

    And you're welcome...I'm happy I can help in a small way.
    Oluwa

  4. #14
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    Hi Oluwa,
    I hope you didn't take offense to what I said about the weight . It was said with love "). I would gladly take 10lbs from you!

    As for the Melanoma cancer......Thank g-d I am a survivor and have not had any metastasis (knock on wood). Not sure if I mentioned that the only reason why I found I had melanoma cancer was because of a close friend having it, who eventually died from it (leaving behind a one month old baby). Yes, my thymus was removed and was found to be a THYMOMA, which can turn to cancer alot of the time (is often times found in people with auto-immune disease). I like to think I have an angel watching over me and protecting me.

    My weekend was uneventful as Im still not feeling great. We live on 5 acres with about 30 animals. I find solice alot of times just spending time with my animals. It always makes me feel better. Is your husband a pilot? Maybe you should hire someone to plant for you that way you can spend quality time with your husband. Just a thought. So, you had back surgery? That must have been rough. Do you think that is why you got Lupus? Maybe from the stress on your body after the surgery?

    Not sure what diet Im going to go on yet. I have NO APPETITE which makes it even harder to want to eat. I know that I need food for fuel and I HAVE TO start eating healthy for my baby. He NEEDS to have a healthy mommy!

    Thank you for your concern. Its hard to find people who understand what it feels like to not feel well sometimes. Im lucky that my hubby understands but the rest of my family doesn't get it.

    Big hugs,
    Melissa

  5. #15
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    No offense was taken. I was laughing and out loud too.

    My husband is a Computer Architect. Traveling or working from home. Depends on the project and with whom. If it is a project with Boeing..away. With say Jones Of New York, Proctor and Gamble...50% here and the other there.

    What kind of animals? I have a Jack Russell and a miscellaneous cat and fat at that. I tried to help her lose weight. Even put here litter box upstairs. Nothing. It is just her the vets say. Prescription food, not budging.

    I had three back surgeries. Two lumbar and one cervical. The last, cervical..sent me into a mammoth flare. I believe I had Lupus in my life for quite some time, before the surgeries. Symptoms spread out over the years before coming to a head. Cumulative. Things like rashes, dermatitis, cosmetic allergies, hives, nose ulcers, arthritis..bouts of fatigue, then waning for years..treating those as typical medical woes, without thinking an auto-immune disease. Taking Vioxx, topical creams and etc. Even thought it was early peri-menopause.

    One day the face rash never went away, two by two my joints cried, then the muscles..then down for the count..exhaustion. Unable to hold a toothbrush or walk. You know how it is...so here I am.

    I stumbled into this forum, as I was looking for answers to help me out of my mental and physical anguish. Desperate...anything.

    I have learned flare or no flare always treat yourself with care and make sure you always have a reserve. Just because I feel well enough I can't run myself ragged. Since learning that here and through my reads I am doing so much better. And being able to read and relate with others just like us. Different symptoms, but we all want to be understood and also I learn to be understanding of those who don't have Lupus by understanding why they don't get it.

    You are a survivor ..being through so much. Hugs. My Mum had lung cancer, it metastasized and my Mum died. I miss her. I wasn't done learning. She died when I was 33.

    You are welcome and thank you for sharing your words, thoughts with me...
    Enjoy your dreams,
    Oluwa

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