Old member, new name, and new issues...cant chew

[AmberD86]

Hey guys! I was once here a few years ago but name was “duby1186” or something but I couldnt get back into old account, not sure email or username EXACTLY. I remember talking to bossman a few times personally tho.

Anyways, names Amber and im now 27 and I have NF2. Went deaf at 17 and have had 27 surgeries and procedures in past ten years. I get eye removed on 22nd and waiting to get approved for a major surgery in coming few months.

It is also now going on a solid year since last MAJOR surgery, I had a 5cm tumor debulked in frontal lobe region of head. Its taken a lot more then I would like and although I was decent at the fitness stuff before, this surgery killed me. Im a tad confused as to what I need nutrition wise more so then fitness.

Here is the major issue. I can NOT chew food. The first two months I had a feeding tube bc I was so out of it from surgery, it also really caused havoc on memory for a bit but finally getting settled and back into things. I was then able to swallow fine and put it this way, I was reborn and started over bc the first thing I could only use was a sippy cup LOL I cant close mouth bc it messed up jaw function and now that its been a year, plan to look into being corrected if can. Otherwise, intake is pretty spacific. Only liquid or soft things. After time I learned new ways to adapt and what I can and cant eat as well as finding new 'big kids' cups to drink from

if its hard or crusty I cant have it. I basically live off those boost drinks, like ensure I guess but way tastier that is usually “breakfest”

lunches and dinners range more now tho. I do make a killer shake. Oatmeal, muscle milk powder, peanut butter, ice cream and milk to fill it and blend it in a blender. Its a good 20oz drink and filling. I can eat like mac and cheese or anything noodle based as long as its ovgercooked a lil and just cut up small. I can eat like a grilled chicken breast as long as, again, its cut up small. And I just swallow. I have experimented with things like bread and dip. No chips whatsoever but the bread with it is easy. I know this isnt all nutritious LOL but idk what else to eat that doesnt involve chewing it. I can do digiorno pizza also as long as its not burnt and yeah I hand pick everything off and tear it up as I eat it to swallow it.

Mind you, I am only 123lbs, so its not so much as needing 'diet' advice but maybe suggestions as to either other shake fillers or powders or suppliments bc I think I may be low in iron and tired and need naps everyday.

Basically questions are about ideas of healthy food if I cant chew it? I only take depressants and also melatonin at night bc even tho im tired, without it I never fall asleep bc I have an over active mind I guess. So im trying to get back on feet better bc that surgery did another major thing to me, it fractured lower spine and made me weak from waist down. After I get into better food tactics ill go into the fitness stage next and describe it further I appreciate any advice as to what are healthy things to eat if you cant chew it? Thanks!

[Boss Man]

Hi Amber, it's really good to speak to you again.

I have to say first of all, that as always I found your heartfelt admissions of such difficult times, both beautiful and humbling and if I had the proverbial magic wand, I would give you the life you are truly worth in a heartbeat .

I am so sorry to read about all the problems with your eating and having eye problems and back problems and I just want to send you a BIG HUG, because your life has been such a difficult one, but you have always seemed to me to be such a positive and touching Lady and right now I feel a slight sense of sadness, but I also feel immensely proud of you, for being able to speak about your life so expressively and with such beauty.

You really are a true inspiration , especially when you were trying some time back to run long distance races and in the future I hope we can help you to be that person again and help you discover more moments in your life where you will be able to shine and inspire people with your achievements, like you deserve to.

In terms of what you're talking about, you can buy things like benefibre, fibresure and metamucil, that will allow you to get more fibre in your diet as those products dissolve in water, or you could look up supplements like psyllium and psyllium husk.

As for other supplements, you could try glutamine, which helps with immune system function and sleep patterns.

You can also have something in your diet like boiled, blended carrot. As it's been shown that raw carrot releases about 30% of the beta carotene, but the action of boiling and blending, allows around 90% of the beta carotene to be released which is a good thing, as I appreciate with your current issue raw carrot would be totally unworkable as an option anyway.

You could use seasonings with food like sea salt, pepper, mustard and you might find finely diced parsley would work and parsley is very good for iron and b vits, although it often is largely overlooked as anything other than a garnish

You could also have soup like tomato for example, or oxtail, as the small bits of oxtail should go down easily enough as the soup content would wash them down, so it should avoid the need for chewing the meat. You might also get away with things like chicken soup and pea and ham, using the same premise.

You could also use yoghurt perhaps as it just requires swallowing, or you try kefir.

If you're not sure you can google kefir growers and they sometimes produce so much they send you some for free and depending on your liking for it, you leave it in milk for 12 to 36 hours and it dissolves the lactose sugars in the milk and turns it into a yoghurt like substance.

You could also try juicing fruits and vegetables to get some of your nutrition.and try things like fish oil capsules or an omega 3, 6, 9 supplement, as they often come in liquicap type form, with a smooth gelatine coating, so they're easy to swallow with water, or you could try rill oil capsules as well which get good revues. Cod liver oil might be an option, but the liquid isn't that great tasting to be honest.

You could try mashing up banana like people do with babies. I don't mean that in a patronising way, just a practical way .

You could experiment with scrambled egg, as it isn't as solid as boiled, poached, fried or omelette, but if you cut it up enough into small pieces you might be okay eating it and you can make that in less than 90 seconds, so it's quick and easy.

As you said with very small bits of chicken, maybe you could try that with turkey and ham, or try minced beef and quorn mince and see how they work out for you, as mince is generally quite moist and is in small pieces that should make it easy to swallow

You might find some fruits a little easier to eat if you use custard, like banana, as opposed to mushing it up, because you've then got a nice thickish liquid that will help the banana to travel down more smoothly, or if you slice things like cherries and strawberries enough, you could use cream as a medium to help the bits go down.

You could try spaghetti, if you cut it up small enough into pieces when cooked and see if you could eat it with things like minced beef, quorn mince or tomatoes reduced into sauce.

Mashed potato might work as well, as you can have small easy to swallow mouthfuls and see how that works.

There's some useful suggestions for you and if I think of any more I'll let you know.

I will apologise sincerely if I am about to ask anything I shouldn't and I would completely understand if you would rather not discuss this, but what would the eye surgery entail?

I presume this has been touted as an absolute last resort, I:E: laser surgery won't work, or other surgeries like a vitrectomy wouldn't work.

All that I can say as well at this point, is GOOD LUCK with everything, I really, really mean that. You're an amazing, amazing Lady and we will give you as much support with anything in your life as is realistic and when we can and as always I am here for people to talk to in private, so if you have any personal concerns, worries or things that are troubling or upsetting you and you need a private, discreet and confidential outlet for your feelings, send me a PM any time you like and I will endeavour to try and get back to you if I can within 24 hours which often is the case and I will try to understand, empathise and never ever judge you for anything you say, but I will give you the carte blanche to talk about anything as much as you like and as often as you like, in whatever way(s) you like, because personal time for members has no restrictions on content, because peoples emotional and mental well being are key cornerstones to good physical progress and I will try to be here for you privately as well if you ever want me to be .

I hope I have been of some help to you Amber, but anything you need at all, we are here for you as a community. I absolutely admire and hugely respect your bravery, courage and inner beauty and I hope life will start to give you more of the happiness and achievement a very, very special person like you is definitely worth.



Oh and out of interest your old username was Hope4life .

[musculArgirl2]

uncle once had an issue where he could only eat soft foods.
You are pretty incredible and quite inspirational with all you've gone through

Blessings, Becky

[AmberD86]

Aww well thank you! I have some guests but give me a couple days. Im gonna write down a few of the suppliments and fiber fillers. Mind you I am from florida and I did come across some things or foods I never heard of

I never got into eating babyfood yet and that wouldnt bother me in social terms lol but the flavors might im not the biggest on veggies mushed up unless maybe for a chicken and dumpling stew or something. I can eat chicken and turkey good as long as moist but I think ham would be to thick of a meat and wouldnt break up well. There is a lot of crockpot stews I wouldnt mind trying. I make a good greenbean cassaroll but not the normal way. I use cream of chicken soup and cook chicken breast in the crockpot for like four hours on high and that alone makes the chicken increadibly easy for me to eat. Like melt in your mouth good. Then I do the seasonings and greenbeans in then bake for half hour and makes the greenbeans soft to eat.

Id make a great chef at a retirement home LOL a lot of what you suggested I have done. Mashed potatoes or meatloaf sorta, depends on how its cooked. I do have to overcook things a tad. I can also manage a taco salad if thats 'healthy'

as for medical side. Idk what I was dealing with back then, totally didnt think of that username either lol when I had this last major surgery they tied me down to tight for 12 hours, was a new doctor, and I must have been to out of it to notice till they took me off meds to go home cause thats when I felt the pain and back was fractured. I could not stand up from sitting on the floor by myself for a while but I got that back now. Im just weaker till I start working out better.

The eye thing, they are removeing the entire eye. Its bad one/blinde side. Over time the eye 'died' more and scared up after I went fully blinde ten years ago in it. They are removing it and I will have a fake eye/prosthetic lens to replace it. Im excited for this LOL its a really good thing.

I am more focusing on health/eating first bc the next surgery deals with a 4cm tumor near brainstem and I have NO idea how that could leave me so I dont wanna work out hard then surgery and loose it all....again...so once I can get a good diet back up and running, ill move on.

And if ANYONE wants to know anything, I really have NO problem answering questions about what I deal with. Some do think they may offend me but nah, it is what it is and I am always trying to find a way to make the best of it.

in a few days I may cross over to the diet section for more of just basic imput and not so much whole story lol. Once things settle here ill update profile and such to explain story there. Thanks again for the imput!

[Boss Man]

No problems Amber; you must do whatever you think is best. I can only begin to imagine what your life must have been like for so long, but you have shown yourself to be an incredible inspiration and even when you have had to go through so much, it seems to me as though you still remain an optimistic person to a large degree and it makes me happy to know you have someone in your life, who is giving you the sort of emotional nourishment you richly deserve and I hope it works out for you and he I really do .

Your body is not as physically sound as I'm sure you would like to be, but one thing that your condition can never steal from you unless you let it, is the pure and beautiful emotion in your heart and if you still have that, then I feel you still have so much and you have proven to me in the past that you still have so much to give to the world and undying respect and support will remain yours for as long you want them and unconditional strength, so take as much of that as you need anytime and know that certainly myself and no doubt others here, are 10,000,000% behind you and I want you to be the fittest and best you can realistically be as soon as is humanly possible, so you can one day have as much of the life as you will richly deserve, in the given circumstances.

Oh and thank you for keeping us updated of your ongoing fight with the NF2, because you have never had to do that, but I feel extremely privileged to have been given the chance, to understand just a small bit of what someone like you goes through, from first hand experience and I'm constantly proud of you for having the courage to talk about it and share such difficult and heartfelt things in such a beautiful and unique way.

Your bf is definitely living his life with an incredibly special Lady, that's for certain .

GOOD LUCK again and whatever you want to ask, say, or need advice, support or opinions on, we'll be here whenever it's feasible, to give you all the added support I know you are worth every single day.