April 23, 2019 at 2:39 pm #16775
Since being on a PEG tube for the last few months keeping me nourished for my surgery, I have lost a total of 12 lbs. This doesn’t seem like much to lose, but when my starting weight was 107, this is quite the loss. Looking at my body I feel uncomfortable, embarrassed, and unhealthy. I never felt this type of discomfort with the way I look.
Looking at the way I look and realizing just how much weight loss has effected me physically and mentally, it makes me angry and upset because it is something that is so beyond my own control . The weight that I have lost is something that I can’t exactly “fix” until the surgery. After the surgery, it will still be a long road of recovery, maybe some more weigh lost, and I will have to start eating softer foods before graduating to actual meals again.
Have you struggled with your weight and body image? How do you cope with feelings of embarrassment and the physical and mental toll this takes on you?
April 24, 2019 at 7:41 pm #16798VKParticipant
Thanks for your bravery in discussing weight issues. The problem with weight issues is that they’re half societal, half psychological, and half genuine health reasons. That’s a lot of halves.
For example, you probably don’t like society telling you that “thin is in”, just like you don’t like seeing that low number on the scale. (Great conflict… ugh.)
My pulmonologist unfortunately seems to be encouraging “thin is in”, saying that my 150 lb. weight at 5’8″ is “borderline obese” in my special case because my lungs are so small they can only support a body weight of 110 at most.
April 24, 2019 at 7:47 pm #16799
I’m sorry that they are making you feel borderline overweight because for someone that height that certainly doesn’t seem overweight !!!! When i was playing hockey and had a lot more muscle on my body I was 120 lbs at 5 foot 2. To me, I felt strong and healthy. It’s hard knowing I won’t get back to that same physical strength any time soon but I hope after my surgery I can start gaining a bit back. A lot of people don’t understand how hard it is to actually gain weight. Especially with medical problems that my body has adjusted to at the size I am (actually realistically I have about 10 lbs to gain to be in the “healthy” range. I also do not FEEL healthy and strong right now. When I am able to eat, I try to measure myself and my weight by how I feel and don’t focus too much on the number. It has been hard now that the number has been such a focus the last few months with the weight loss and feeding tube. It was a lot more simple when I didn’t know my weight and just tried to be intuitive with my body. I think being intuitive and mindful about how we physically feel at a certain weight is more important than charts and numbers and “ideal weight” . I am passionate about this topic, as you can probably tell LOL
May 4, 2019 at 1:35 pm #16947
So sorry! Some doctors can be so rude! I don’t feel like that is anywhere near Obese!
Carol, great coping as we shouldn’t shame our bodies and not let others shame us either, but it happens, unfortunately. I have to remind myself daily, often several times es per day the things that are out of my control and those that are!
Brittany, I agree, gaining weight is much harder than most think and to gain the muscle mass , there’s where we have to try and be sure we are fueling our bodies with the best foods. Thanks again for your bravery and sharing your concerns with us.
May 6, 2019 at 8:48 am #16956
I will have to find a good brand of protein drinks to sustain my energy and my muscle repair post surgery !!! Do you have any recommendations?
April 25, 2019 at 12:48 pm #16800Carol VolckmannParticipant
Your right, your weight loss is out of your control. Right now before your surgery it must be very important for you to be receiving the nutrients your body needs.
My coping mechanism for issues out of my control is to focus on issues I can control and try and stop myself from “shaming” and not let others try tell me what I “should” do or not do.
I like to say “…don’t should on me … don’t should on others and … don’t hould on myself”!
My prayers along with so many others are wishing you strength and courage wrapped in love for your up coming surgery. Please allow yourself with positive thoughts and positive energy.
All the best,
April 25, 2019 at 5:33 pm #16806
Thank you so much for your words of wisdom and your great advice! I really needed to hear that. Keeping a positive mindset can be so difficult when going through such a long road of hard days and months but there is hope in knowing that things will be better than they are now. I like that “don’t should on me!” So true ! Thank you for the well wishes and I will definitely be keeping everyone here updated after the surgery.
April 25, 2019 at 1:27 pm #16805Jimi McintoshParticipant
You somehow manage to discuss those things that cause a little discomfort,
But usually joy and food for thought. LOL. This body image is a major concern
for me, no matter what I do or do not eat, I am obese and swollen, it changes by the day, based on fluid retention.
My doctors cannot agree on gastric lap band, protein supplements. Two said the weight is a major issue to longevity and PH management. My GP and Nephrologist, said risk of kidney problems from the protein and surgery is too high. I live , not liking my body image and size, but, not knowing what to do about it. On Adcirca, I was
Able to exercise more, walk further, breathe deeper. My kidneys and liver screamed for relief. There was also the risk of more clots. On Adempas, my PH pressures are better, my cardiologist and pulmonologist feels that a gastric band or bypass will help greatly
Brittany thanks for keeping everyone discussing our issues. We all benefit by sharing and caring. We appreciate you and we all have your back
April 25, 2019 at 5:36 pm #16807
Thank you so much Jimi. I really appreciate you talking about your own struggles with weight. That must be such a frustrating conversation to have with the doctors, especially if they are having conflicting thoughts about it involving your safety. It’s hard to hear such differing opinions. I’ve been there before too. I try to be vulnerable on here because there are so many people out there who have similar thoughts that may not know how to express it. I like to give them a voice too.
May 4, 2019 at 1:28 pm #16946
I applaud you once again as you address these tough topics! I have been overweight and underweight and it seems , either way I’m not happy , neither is anyone else, lol
I know when I feel the best about my body, is a certain weight and the doctors want me to gain a few more pounds! I’ve gained about 12 in a few years and that’s huge to me! I still feel like my body image is not good as I have more skin than muscle and pre-PH, I was more fit! This itself takes a toll on our mental health, so I’m trying to love myself as of is and remind myself I’m doing the best I can. Although, watching you , I think I need to try harder !
I know that post surgery you’ll be taking small steps to get some mass and I know it will take time for you to put the weight on as you’re so small to start with. We are hear to get you through those days and that process!
May 6, 2019 at 8:47 am #16955
I can’t begin to tell you how much your support means to me and to all of us on the forums, Jen. Thank you for speaking out about things like weight gain and weight loss. I know what you mean by not feeling as “fit” or even as “toned” as you were before. Losing that and losing the look of my muscular body was really difficult to me. People still think I have an athletic build (even though it is much more petite and slender than it once was). People assume I do something like ballet or dance and they would never assume that I once was a muscular ice hockey player that could get into fights with anyone that crossed my path hahaha! You definitely wouldn’t believe it by just looking at me, but I still have that fighter spirit.
May 6, 2019 at 2:27 pm #16973
Thanks for the kind words, Brittany!
I try and help others as I’ve been dealing with these issues and PH many years now.
I enjoy talking to others to share my experience as well as listen to their own experiences and tips. I always learn new things!
You definitely still show that fighter spirit , no matter what your weight is at the moment! I know, with time, you will gain some of the weight you lost back. Hoping you can just love your body as it is and know these transitions are not your fault . You work so hard at keeping your body strong!
May 6, 2019 at 3:07 pm #16979
Ironically, this part of my “Medical journey” has taught me a lot about body acceptance even though I physically do not like the way I look, I still accept it for what it is and appreciate all that it is still doing for me at the end of the day.
May 6, 2019 at 3:58 pm #16985
I am with you Brittany !
I may want to improve my body , but after all it’s been through , I’m thankful each new day! Our bodies are so amazing and complex!
May 8, 2019 at 2:26 pm #17036Christopher Cassata Bobby ShowsParticipant
I am struggling really bad with this.When diagnosed with PAH and CTEPH I was 444 lbs. I lost nearly 100 in a year. Then I have plateaued finally at about 360-370lbs. I am very proud of this loss. But my family and Dr.s see my weight is not getting lower and I am seriously losing my mind because as we all know Dr.’s are all about weight loss. I can’t have the lapband surgery and don’t want it for personal reasons. I am really going crazy and I am afraid of losing my way and becoming angry at all of this. Not to mention I am very weary of Dr.s and everything at this point due to fact I feel like a total failure because I am not loosing weight like I want to.
May 8, 2019 at 4:40 pm #17091
I am so sorry that you are having to deal with the body image and weight troubles right now. I know it’s hard when they are focused on how far you have to go and now how far you have come. It always motivates me when I look towards the things that I did well to get met to a better state of health. For my body, I have always struggled with weight gain, and my doctors put a lot of focus on the number and not as much focus on how I was physically feeling. For me, I can physically feel okay at 105 lbs even though that is borderline underweight for my height of 5’3 . It helped me when I found a great dietitian who worked with medical conditions before and she didn’t put the focus on the number on the scale and she also worked with my doctors too. I still see a dietitian who does the same for me. Have you talked with your doctors about possible dietitians that they would recommend or a program that would be sustainable and work WITH you? I feel like it’s always best when you have some type of say in the care plan and help your doctors to come up with one.
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