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Taking charge of your health 5 years 9 months ago #53983

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
As some of you know, I've had Lupus for the past 10 years. It's been one thing after another, one medication after another. I depended solely on medication to help but it really hasn't and in fact, has caused long-term damage. I currently take 9 prescriptions a day.

A few months ago, I found out that I had high cholesterol and was pre-diabetic. I can't stand the thought of one more thing to manage or one more thing to medicate. Each medication leads to more side effects and more prescriptions. Each diagnosis leads to more symptoms and loss of quality of life. So, I decided to research in the hopes that I could change the course of events. I can stay on this path of unhealthy eating and just wait until I'm diabetic or have a heart attack, or I could change the future. Too many of us just accept the cards we're dealt without realizing that we have the power to change it. I usually ate salads, fruit, vegetables and fish, but it isn't enough. I have to eliminate certain foods and I have to add certain foods. For the past week, I've eaten all organic, cut out all sugar (except for a bit of creamer), and stopped eating gluten.

The first thing I noticed is that I have a lot less reflux. I've been on medication for that but still woke up at least 3 to 4 nights a week with a mouthful of bile. I had to sit up fast when it happened and it would take an hour or two to fall asleep again because it stayed burning in my throat for that long. Gross. Since the new diet, I have not had this happen one time and in fact, stopped the medication. One of the side effects of the medication is hair breakage, and right now, one side of my head has much less hair than the other side. What's the trade off here.... take medication, have hair loss and eat what I want, or eat healthier, take no medication and have pretty hair. It's too easy to rely on pills and I've done that far too long. Pills rarely make you healthy; they really just give you license to stay sick (for many chronic conditions). I don't know if diet changes would make a difference for ITP, some people have claimed that it did. But it sure wouldn't hurt to try it at least to try to prevent some of the damage that the treatments cause, or any other illness that might pop up. I know that I cannot continue to deny that food is literally killing me. It's easy to deny when you feel well but when you don't, you have to change. By the way, I am only 20 pounds overweight, so weight is not really the cause of all of this.

Anyway, below are three very good documentaries that I watched. These can be live changing.

Fat Sick and Nearly Dead

www.youtube.com/watch?v=i_MxCKKIgJI

Escape Fire

www.youtube.com/watch?v=g1uEnXtykbU

Bought

www.boughtmovie.com/free-viewing/watch.php?

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Taking charge of your health 5 years 9 months ago #53984

  • Rob16
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Sandi, I am glad to learn that you are taking steps to improve your diet so as to improve your health.

I just finished reading a couple of articles that I hope will change my eating habits and hopefully help me to lose my excess weight and reclaim my health.

The mistaken theory that dietary fat and cholesterol were the culprits causing heart disease and obesity (etc.) began in 1955 with Eisenhower's heart attack. The real culprits are sugar and refined carbohydrates; the research to prove that began in 1957, and by now is incontrovertible, but still has been accepted by fewer than half of doctors. These articles tell the story of how badly "science" got it so wrong and how bad science became entrenched. Both articles tell the same story, one briefly and the other at length; the longer read is well worth it.

www.investors.com/politics/capital-hill/how-settled-science-caused-a-massive-public-health-crisis/
How ‘Settled Science’ Helped Create A Massive Public Health Crisis

www.theguardian.com/society/2016/apr/07/the-sugar-conspiracy-robert-lustig-john-yudkin
The Long Read: The Sugar Conspiracy
In 1972, a British scientist sounded the alarm that sugar – and not fat – was the greatest danger to our health. But his findings were ridiculed and his reputation ruined. How did the world’s top nutrition scientists get it so wrong for so long?

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Taking charge of your health 5 years 9 months ago #53986

  • TerriC14
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Sandi I am so glad to hear that these changes are making you feel better. Good luck as you continue this journey.

My 30+ years in nursing have given me the perspective that the American way is for every symptom there is a pill to cure it. Unfortunately most of these pills have side effects which then require another pill to control the side effects. I am not anti medication if it is necessary (if your blood pressure is high it needs to be controlled) but I don't think patients take lifestyle changes seriously. If my blood pressure is borderline I will do whatever is possible to change the outcome before taking that first pill. If I needed to start meds could changes decrease the dose or eliminate them? I find that adult practitioners are more likely to do this then pediatric practitioners, although many times they are pressured even for things like antibiotics because the parents want the child better quickly. I am quite nervous about my daughter changing to an adult hematologist because of this, the pediatric hematologist gave her the opportunity to "watch and wait" and never pushed steroids.

I am also working to really clean up my diet, my belief is that so many health issues are caused by all the sugars and preservatives in our food. For me it is still a work in progress but I am trying to get ahead of health issues before they start. And I used to run but have gotten lazy.. like I said a work in progress.

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Taking charge of your health 5 years 9 months ago #53990

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Terri - It is definitely a mind set. I do take blood pressure pills and am hoping to get off of them. I did live by the thought that a pill can fix everything, but I decided that I'm not willing to sit by and allow myself to end up with two more medications. I don't want to have to manage diabetes and all the problems that go with it. I have enough problems. I hear horrible things about cholesterol meds and don't want to go there either. So far, it hasn't been hard. I don't crave junk food at all and I was crazy about cakes and pies. Good luck with your life-style change. I'm going to my local organic store today to see what else I can find!

Rob - I've read that and don't really avoid fats. I mainly use EVOO and Hemp Oil for salads and cooking. The only problem with those are the calories.

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Taking charge of your health 5 years 9 months ago #53991

  • DeeDee Marie
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Sandy, I met Dr. Furman (not sure of the spelling) at the ITP conference in Colorado and also read his book. He is an inspiration! He is older but you would never know it. I still have his book and do try to apply some of his principles to my diet. I think you are on the right path in your new decisions to get off some of the pills. This is exactly what Dr. Furman does for his patients: He gets them off their medication. Prednisone is one of the culprits in causing your blood pressure to rise and the pre-diabetes. I know this is one medication that you do have to take.

If you could exercise, this would also help a lot. I can no longer run as I get a lot of back pain. But, I do a fast walk and use some of the machines at the gym. This helps to keep my blood pressure down so I don't have to take any medications for any of this at the present (and, I'm going to be 68!!).

Good luck on your journey; I know you can do this!
Dee Dee

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Taking charge of your health 5 years 9 months ago #53994

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yes, I know that Prednisone has a lot to do with it. I am trying to get to a lower dose. I've been alternating between 15 mg's and 12.5 mg's every day. I had trouble with muscle weakness before and it's even worse now. I can barely get through a shower without my legs giving out. I want to add exercise, but I am barely able to do dishes or walk into another room at this point. I had trouble even before I was tapering Prednisone, but thought it was due to the stenosis. It's not any better, so we will be looking at other causes. In the meantime, losing weight and eating better should help some of it. I need to call and schedule PT but that seems too much of a commitment right now. They are only going to do heat and massage anyway. I keep saying maybe tomorrow. I rarely go out of the house and when I do, I'm done for the day.

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Taking charge of your health 5 years 9 months ago #53996

  • DeeDee Marie
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Sandi, do you think the muscle weakness could be because you are cutting back on the Prednisone? I know
that it always affects me with muscle weakness after I took the Decadron pulses. Just take it one day at a a time and try to make progress on you walking activity. My husband has a lot of pain and numbness in his lower body (mostly his legs), but he does try to work through it with some exercise during the day. He has a lot of symptoms of MS and we are going to have the doctor test him for it (he's had problems for at least 25 years--but they are progressing).

You had mentioned that you had a swimming pool? Would water therapy help you? I use to swim and really loved it, but stopped as I was getting sick a lot (too many people and the bacteria at the gym).

Just keep trying and do not give up! My husband and I are still horseback riding and we both have a lot of problems!

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Taking charge of your health 5 years 9 months ago #53997

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
I just started tapering Prednisone last week, and have had the muscle weakness for about 9 months. I've been through tests, but I guess they need to do more. I see the Neurosurgeon again in three weeks.

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Taking charge of your health 5 years 9 months ago #54019

  • Aoi
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Good luck with these changes, Sandi. I've read the book by Fuhrman Rob16 mentioned and enjoyed it. I'm also big on minimizing low-quality foods in my diet and eating mostly plants, which seems to work pretty well most of the time. But as I'm sure you know, everyone's metabolism and nutritional needs are different, so the benefits often come slowly, and only after trial and error.

Keep us apprised of your progress.

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Taking charge of your health 5 years 9 months ago #54050

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
I went off of the diet for two days while the funeral was going on because I had no time to make my own food. GERD is back full force. Every time I lay down, I get a throat full.

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Taking charge of your health 5 years 9 months ago #54056

  • Aoi
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Sorry to hear that, and my condolences on your sister's death. Sometimes I think it's not so bad to just focus on one thing and let everything pass for a day or two. GERD is common among my family and friends,and it sounds very unpleasant. I hope your negative for Bartlett's esophagus, and just dealing with some loss of muscle tone.

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Taking charge of your health 5 years 9 months ago #54058

  • DeeDee Marie
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Sandi, my deepest condolences on your sister's death. It is very understandable to go off your diet during a stressful time like this. When my only brother died at 56 in 2002 is was a very sad time for me. Don't be too hard on yourself. You'll get back on track.
The following user(s) said Thank You: Sandi

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Taking charge of your health 5 years 8 months ago #54120

  • meredithjane
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Just catching up . . .
This is really interesting. About a month ago I was slightly unwell & felt very tired. Decided to give up sugar, snacks & chocolate. Didn't even feel like a glass of Ros`e wine as I usually do with dinner. Ate more fruit & veg etc.
THEN - I had a blood test & it had gone from 32 to 77! I am sure they got it wrong, but hey, I'm not complaining. AND guess who's taking me out for dinner? (Was promised dinner if my platelets were over my age . . . well that was 12 years ago so they've got some catching up to do!)
Have just spent the last week with grandies, flat out, diet out the window. Feel like having another test out of curiosity, BUT I will try to get back on track & wait another month.
Meanwhile, I am growing veggies & will enjoy some bok choy tonight.
mj

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Taking charge of your health 5 years 8 months ago #54189

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Hey MJ. Maybe it wasn't a mistake? I'm starting to believe in a food connection more and more. Not to say that platelets go up when we change our diet, but it can improve overall health which makes a difference. Once I started learning about what is in food, I can't go back to eating most of it. I've always loved Big Mac's but I can tell you right now, I'll never touch one again. That's only one example.

I just watched a great documentary on Netflix called Prescription Thugs. Very interesting.

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