Losing Weight Helped When It Came Time to Manage My Disease

calvin , I have throid problems and i gained so much weight.im so exhusted.

Very encouraging. Hoping to copy you this year. Especially on all the other weights too. I suffer Sarcoidosis in silence as the hospital discharged me when my lung nodules were a little smaller then the previous scan. Now I know I have a flare up I can not be seen. So hopefully with ofloading all the weights God grants me a better management of this difficult condition.

Thank you

You make a lot of good points, and I congratulate you on your success. In my professional life I managed obesity and diabetes- and my father was a hall of fame wrestler and wrestling coach so almost from birth I knew how to maintain weight.
When I was diagnosed with a form of pulmonary fibrosis, I was close to my ideal body weight of 170 pounds but I was on track to die of the lung disease. I was treated with high dose steroids that helped my breathing, and 20 years later- I am still not dead. I was never able to completely resolve the lung issues- and now multiple systems without steroids- but I paid a huge price developing insulin resistance, low thyroid, low testosterone, and other issues- and weight ballooned to 320 pounds. I was always hungry, and would become shaky if I did not eat. My lungs did not allow me to exercise much- certainly not jog or run. My job required suit and tie- and dress shirts - and I got to the point where Brooks Brothers could no longer fit me.

I did what I told my patients to do. I tried to take control. I started a food diary- wrote down everything I ate before I ate it in a small notebook. I weighed myself on a schedule weekly. I lost weight almost immediately just by paying attention to what I was eating. When my weight stabilized --- I got out my calorie book and figured out how many calories I was eating on weeks when my weight was stable. I figured if I could reduce caloric intake by 500 calories a day (3500 in a week) - I would lose a pound a week. I also could see what foods I enjoyed but were too high in calories and what foods I liked that were low in calories. Fresh raspberries in diet jello is a good substitute for "diet" yogurt even if you add a squirt of whipped cream. As you go further you can read the contents of prepackaged foods-- and get your eyes opened. IF you can prepare your own food--- you can monitor calories as well as fat, carbs, and protein (and salt). With some planning, you can eat well, get satisfying foods to a great extent, and manage weight as well. There is a tipping point at which your body will just say NO--- it will think you are starving to death and try to preserve sometimes to your detriment. For an average person that is somewhere around 1000 calories a day. You already know what your daily caloric requirement is to stay the same weight, so based on that you can lose a pound a week for every 500 calories a day less then maintenance diet but not on a diet less than 900-1000 calories (starvation). It is hard to lose weight without exercise, but exercise alone usually fails. I started walking, first with a cane, then without for about a mile and a half in the morning and then again in the evening. I normalized my Thyroid and Testosterone, added Vitamin D, followed a regular 3 meals a day - 40% carbs half simple and half complex- 30% fat (try good fats)- and 30% protein. emphasis on fresh fruits and veggies if possible. Stopped sodas mostly. Little if any alcohol except rare social. Got a CPAP and try for 8-10 hours sleep a night. I was still requiring steroids, but with medication I controlled my blood sugars.
The end result is that I was able to lose 150+ pounds over about one year- cut my waist size by 18", and admit that I
DO feel better, and returned to full time work, I am now retired but mostly due to age. I weigh what I did in Medical School.
Managing your life with Sarcoid is not easy or simple, but it can be done if you use your brain to decide what foods and how much go into your stomach, how you will remain fit and active, and utilize healthcare professionals as you need them. Keep up to date on vaccinations, don't smoke, wear seat belts and drive responsibly. You may well live long in excess of your expectations.
Steroids can and will complicate your life, but if the alternative is death they are not all that bad and life can be managed. Even on steroids or Infusions, life can be productive and good.

Dear Bottina,
With 50+ years as a physician, I can tell you with confidence that a patient physician relationship should be a partnership. Patients who are involved in their own care do far better. That does not that you should self diagnose or self prescribe- but do find a provider who will take the time to listen to you. Sarcoid is rare, so that most physicians will only encounter one or two in a lifetime. Some providers will blame the patient for their disease--- If you are easily fatigued - it is because you are fat, lazy, or written off as drug seeking. I told my ophthalmologist that I couldn't read my newspaper in the morning, he said my vision was fine. Not a time to argue--- find someone who will help you and ask for help. If you have red hot swollen painful joints while taking 20 mg of Prednisone- and they tell you your sedimentation rate isn't "too bad", and you are doing fine. You can ask for a referral to someone who can help your problem. If you are in a managed care program, call the insurance company to see if they have a designated management person who can help you find the help you need. Never accept a statement that the insurance company is denying you help- at worst they are not authorizing a level of care without further information. If you do not complain, then the care must be OK. If you must, complain in writing and save a copy. Do not argue, but tell them that you have a problem, explain the problem and ask for their help. Lack of information IS a problem. If you feel you need to be seen sooner- standard billing of codes may require additional documentation by the nurse before submitting the bill, but that is their job. If something is not right- speak up. In my office I hired AP or NP nurses- who were able to spend more time and I used my intake LPNs and assistants to assure that I understood to complaints. In almost every occasion if you listen to a patient carefully, they WILL tell you what is wrong and what they do to make it better.

I wish you all the best, but from my experience the squeaky wheel gets the grease.

abc

Hi
I have Sarcoidosis of the lungs I also have shortness of breath inflammation I also get 'Edema Heart pumps slow and Doters' its all to do with my lungs i am forty-pounds over weight, I;m not sure its all to do with my lungs maybe lung trans plant

This was very inspirational. I live with Sarcoidosis, too. I have it in the lungs, skin, and eyes. I was diagnosed when I left Florida. The doctors were very aggressive with the meds and weight came. I’m now doing an entire lifestyle change. I believe with weight loss, healthy eating, limited stress, and much needed sleep, I will be able maintain. Thank you for sharing your story.