It makes no sense, I have been walking around more over the past year, able to walk places I couldn't before, like doing a whole city block to watch a parade, having the ability to walk in a Kroger's grocery store and an Aldis with just me and the walker. Over the past year, I've had to watch every morsel of food to keep the sugars down at a reasonable level. Every little thing affects them. Even if I sleep less they are a bit higher, today's was 133 because I went to bed at 1:00 am and woke up at 6:30 am but the peak sugar [taken two hours after eating] was very good. Diabetes meant sinking the food down even more. We have had food insecurity where I have been happy for organic apples and going without many foods. All carbohydrates have been cut for the sake of the diabetes, all pasta cut down to much smaller portions. Eating many more salads then ever. I have never missed a Flexitouch session and have not missed any wrapping. The results were disappointing though. I'm in the same range, but knowing I need to see where the weight goes on a less bloated day, I can gain or lose 30 in one week.
I do know with less heat at least 15 will come off if not 30, but this is frustration beyond belief. It does trouble me. CICO has failed me beyond belief. The doctors ARE NOT BLAMING ME. Thank God. They know I have a lot to deal with. My regular doctor says I am his most compliant and controlled diabetic patient he has. I have tried my best.
If I become bedbound you will hear about it. If I can walk still you will hear about it. I tried my best. I can only keep going on, what other choice is there? My brain hurts.
Sorry. That really stinks. I wish they could give you more and better help. Life is just so unfair. I hate that.
ReplyDeleteThanks. I am kind of scared. Not sure what to do at this point. There is a lot of time I fight to be at the baseline, AKA DO NOT GAIN MORE....I told them I'm coming back to reweight when I am less bloated and doing it more consistent. They were okay with that. I am supposed to be active this weekend so who knows how much bloat will come then. If some want to ask, What's wrong with Peep, I have lost my mind from this body.
DeleteI am sorry to hear that things didn't go well. Do the doctors ever give you any constructive advice on what you can do about your weight? Other people at even higher weights than you and in worse health also with lipodima have turned their situations around.
ReplyDeleteI've seen nutritionists and follow their advice. I've had the physical therapists and OTs at home and followed their advice, that's how I can walk a lot better. It seems that lower stage people with Lipodema on the health boards do have success in turning things around.
DeleteI am getting the feeling Lipo-lymphedema, the stage 4 where the fluids build up on your body is a whole other ballgame. I have met women on Lipedema health boards at my size or above, and their successes seem far harder to obtain. I'm not sure what is going wrong, I cut the food even more then before. I have done more exercise. Is it the heat?
I am very swollen and told my doctor the other day that problem is getting worse--the overall swelling is getting far WORSE and if I didn't have the Flexitouch and compression, things would be really bad. I refuse to ever move south because this hot summer has put me through hell, with the weather affecting me even indoors.
Like if I was diagnosed in 2014, I'd already be bedbound. I plan to do the gym, and get more things figured out. 1. Pursuing possible Dercums diagnosis, some high stage Lippies have both Dercums and Lipedema 2. Advanced Lymphedema treatment [in huge city some distance away] 3. Cut carbs further down but I can't go entirely carb free. 4. Asking doctor for hormonal testing--my testosterone could be sky high---this is complicating my weight loss efforts--when I was FORCED to go off spirolactone two years ago for the sake of the kidneys--androgens are probably to the ceiling. I noticed ever since I was forced off this drug, I had more problems with my weight.
5. Discussion of what else to do. I also have to find a way to reduce stress and get the finances in better order. I think the forcing to eat at food pantries, and boom and bust cycles with having the money for decent food and then not is taking a massive toll. There's times where food is really reduced. I know ironic......Life is sad when you are down to 2 dollars and need groceries.
Living in affluent area where my visible disabilities aren't as "accepted" and life is harder even as an Aspie. Just lonely having long distance social life and marriage carry all social needs.
Sure some Lipedemics have turned their situations around. I noticed they do have access to more resources, better food etc. I am even struggling with compression supplies and plan to make an appointment with my MLD to seek more advanced care too. So add that to the list.
The doctors tell me I have severe lipo-lymphedema and the outcomes are serious. I talked to my doctor about the bad effect of swelling so badly when active and saying I am ending up in bed more then I want to be and he said, "There's no cure for that outside of what you are doing, and told me I could take more water pills--I do have congestive heart failure too. As I said I wouldn't wish this body on my worse enemy. I know other severe stage Lipedemics who have lost their mobility. I believe they all have tried everything they could. I suppose if I die of this crap, God will know what I did and didn't do. It's been sheer hell, the judgment. I never got to be treated like a human being. Thrown away even by the family long before I went NC. I sometimes fear cracking up, why wouldn't I?
It seems as I got older, socially things got worse, I don't know if its this community or if I just happened to live in a time and place where people were the kind to treat me like a human being in my rural town for those too short years.
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I notice people everywhere seem to be pulled into themselves; so the social thing might be the times. Do they have a senior center where you live. Our senior center is for fifty years old and up. Who knew I was a senior already. Plus it is harder to make friends when your older and have no kids.
ReplyDeleteI hate when doctors say that's all they can do. It feels like there has to be more. I hope things turn for the better for you soon.
Maybe Camus was right " life is absurd"...
I tried to join senior center but they won't take anyone over 60. I was allowed to go to the one in my old community. I am glad you can go to yours. Yes it is hard to make friends when older and there's no kids or famly either. I hate it too, I know if I had real money I could puruse the extreme specialists but I know of severe stage lippies not always having perfect outcomes there either. Thanks I hope life gets better too, and you enjoy your times at the senior center. One thing happening to me is I don't have a lot in common with most people, and that is a tough one to overcome and it got worse as I got older. Agree with Camus. LOL
DeleteI also don't have a lot in common with most people. I'm not even wanting friends right now. I am just trying to clean my house , make meals, do my art, and read. I just don't have the emotional or physical energy. So I gave up and am resigned to being alone a lot. I figure at some point it will happen naturally if it's supposed to. I have so much stress and also chronic pain to deal with. I also am very sensitive and can get anxious around people often. I am an empath. I have been trying to see how I can work that out to my advantage as it has not always served me well.We have to learn to work with our unique traits. Wish I had not waited as long, but regret is always hindsight. It's very hard to be an empath and have had a lot of trauma in your life.
ReplyDeleteI'm not really trying lately. I just hang out with husband, write on here, do art work, watch TV movies and shows I like, do medical stuff--that takes up enough hours--have dentist appointment tommorrow which I made for morning instead of afternoon so I can breathe. Husband told me it's probably best to lighten up any social demands on myself. I think as I got older in this state of health things got harder too. There is less energy to give to people when in person, and the deafness even with hearing aids, its better but it still affects things had a major impact. Yes stress and chronic pain make it tiring. I am in bed more, even though I get more walking and exercise in, the swelling is bad. [My weight failures, I do not think are fat weight, even pictures of myself are looking like night and day depending on how swollen I am] So I am in bed to take off fluids a LOT. Not exactly the stuff of happening social lives. Sorry you face stress and chronic pain, relate to that too. Am glad you are an empath but know that has its painful element. Yes empaths with a lot of trauma it's painful. I don't know if I am an empath but have read enough of their writings to know how it can be tough in this society. Yes this can be worked to an advantage but feeling all the emotions and input can be overwhelming.
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