Losing Weight Helped When It Came Time to Manage My Disease
“Calvin, put that doughnut down!” someone said to me about nine years ago, poking my stomach like I was the Pillsbury Doughboy. It was a funny joke that made me laugh, but it was also true. Over time, I had gained quite a bit of weight and didn’t need to be eating doughnuts.
This happened before I was diagnosed with sarcoidosis, so I couldn’t blame my weight gain as a side effect of prednisone. Nope, I was overweight because I ate too much and exercised too little.
I am not a big fan of New Year’s resolutions. I think they can be helpful sometimes if we stick with them, but I believe that if we want to change, we should do so, and not wait until Jan. 1.
So, despite not liking resolutions, I committed myself to getting back into shape in 2013. To mark that decision, I stepped onto the scale in December 2012. It read 272 pounds. Ouch!
I am a naturally big guy at 6 feet, 3 inches. I have never been skinny, but at 272 pounds I was heavier than I’d ever been. I was proof you could be a fat vegetarian, but being over 40 with a family history of obesity and weight-related health issues meant it was time to get it together physically.
To get started, I came up with a simple plan that I called “SEE.”
‘S’ for sleep, ‘E’ for eating and exercise
In SEE, the “S” stood for sleep. I made sure I got at least seven hours each night, something I had rarely done. The sleep allowed me to wake up feeling refreshed and with my body recovered from the previous day’s activities.
The first “E” stood for eating. I could eat whatever I wanted, but with a healthy balance of foods and a moderate caloric limit. And when I met my weekly goal, I allowed myself a “cheat day” each Sunday.
The second “E” stood for exercise. Working out and physical activity had to be strenuous, but also enjoyable.
That was it. I figured if I focused on all three areas — sleep, eating, and exercise — I would get into shape. It didn’t happen right away, but my plan did work. Each week I saw progress.
Some weeks I lost as many as 3 or 4 pounds, while other weeks I’d gain a pound or two, but I stuck with it. I exercised every day, and each Sunday, I gave myself a celebration cheat day off. I ate well, but if I had to have a doughnut, I ate it and wouldn’t beat myself up about it. I just didn’t let doughnuts be a daily habit, except on Sundays. Over the course of the year, I turned into one of those “after” pictures.
Losing weight — all kinds of it
That year, I learned quite a few life lessons, including realizing how many other parts of my life factored into my health, and that weight didn’t just have to mean physical weight. It could be emotional weight, financial weight, and spiritual weight. I came to see that I didn’t just need to lighten my physical weight, I needed to lose other types of weight that were holding me down, too. To help me do that, I focused on positive forces, such as my support system, and walked away from others that were holding me down.
That’s a lesson I continue to remember as I fight sarcoidosis. I often have to check in with my specialists at Johns Hopkins Sarcoidosis Clinic for ways to continue the fight. This disease is tough physically and it can cause a person to gain weight. But I’ve found that when other parts of my life are lighter, sometimes managing a disease can be easier.
When I stepped on the scale in December 2013 it read 231 pounds. I had dropped 41 pounds that year, but I knew I had shed more than just physical weight. And that was the biggest resolution win of all.
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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
wendy a schleyer
calvin , I have throid problems and i gained so much weight.im so exhusted.
Calvin Harris
I'm so sorry to hear this, Wendy. Stay encouraged, and all the best to you!
Bottina
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.
Calvin Harris
Thank you, Bottina. It's definitely not easy, and all the best to you!
LORNA HARRISON
Thank you
Calvin Harris
Thank you for reading, Lorna!
alan cameron
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.
Calvin Harris
Alan - Thank YOU so much here. I couldn't possibly say it any better. All the best! Calvin
Alan Bart Cameron MD
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
Calvin Harris
Thank you so much for your insights, Alan! Much appreciated. (I'm definitely a squeaky wheel...)
''sandy Roberto
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
Carmilla Hilton
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.