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hi everybody this is Mary and some of you might have seen my prior videos on scleroderma and I haven’t made one in a while and I apologize but this is going to be a little bit of a different one I have moved back to New Jersey from California after being away for five or six years and so I’ve kind of been cooped up in the house and it’s been tough it’s it’s I think 30 degrees out there right now but past couple days there were wind chills even up into the single digits and when it’s that cold those of us who have scleroderma you know how difficult it is but this this is going to be about specific the problem I am having if he explored Dharma you have a 90% probability that you have some issues with your digestive tract and mine were actually the very first symptoms that I had of scleroderma it was waking up and vomiting in my sleep heartburn that was just so awful was like fire ants and by the time I got to yes sir a neurologist I was already diagnosed with Barrett’s esophagitis so it was pretty serious and since then and I was diagnosed in 2006 since then I have been dogged with a lot of terrible digestive issues the worst is that I have no peristalsis I have no motility or whatsoever and I haven’t in years so eating is tough for me I also have microsomia my mouth has shrunk I’ve lost some teeth that I can’t get replaced because nobody can get into the back of my mouth to replace them with an implant I can’t wear a partial denture so as years have gone on my diet has gotten I don’t want to say worse it’s been different it’s become less varied I’ll put it that way I have to eat food that’s bland food that is soft and I love my fresh fruits and vegetables and I found that I just can’t chew them I can’t digest them I cancel all of them and so I I’ve taken to eating a lot of mush and I found that oatmeal is something that I’ve eaten quite a bit of I try to stick to the steel cut oats because it’s soft its mushy it digests well another thing that I do a lot of is yogurt I like Greek yogurt and I make my own soups in fact today the only thing I’ve eaten today are my homemade vegetable soup which I think you can see it very well but it has carrots and celery and spinach and I put some little noodles in there it’s got tomato it’s got some beans I put it can I’m sorry a frozen bag of soup vegetables in there and if it’s got good stuff and I don’t push it and put much in here except maybe some basil a bay leaf which I take out salt and pepper and and last night it had me awake at 3 o’clock in the morning after eating a bowl of soup I just couldn’t I just couldn’t handle it and I know that a lot of you have the same issues so that’s why I wanted to make the video you see I’m gonna use myself kind of as a guinea pig I was so fed up and the past couple weeks have been so bad with bloating I saw my gastroenterologist about a month ago and he said boy you’ve got some bloating going on here I said well you know it comes and it goes but last week I called and he happened to be out of the office and I had to leave a message he’s gonna call me back next week but I said the bloating has gotten outrageous so they they I’m sorry two weeks ago I called and they called my pharmacist for an antibiotic called psych Faxon and this antibiotic is generally used for people who have like travelers diarrhea kind of thing if they come back from traveling and they you know they’re it’s messed up their gut entirely I’ve used it before and it’s worked on me so I asked him if he could just call me in a new prescription for it and they got certification from my insurance company that they would pay for it when I went to pick it up it was nearly $800 and I told the farms no I don’t want it I will figure it out oh man my doctor suggested when I saw him about a month or so ago he suggested that I try taking a probiotic this is I can’t remember which one of us for years I’ve been taking nexium which awesome that it’s over-the-counter now and he also suggested that I try a fiber

supplement like citrus or sitrus al I think it works for me but I think I need to use half the dosage because it’s pretty tough on my stomach those of you like I said you have you have the who have scleroderma and the digestive issues it’s it’s kind of trial and error with us to try to see what works I sleep with antacids dirtbikes pillow because I will wake up in the middle of the night with heartburn nearly every night it doesn’t really matter what I eat matters when I eat sometimes something that didn’t bother me for before it’s just gonna suddenly start bothering my stomach it’s it’s almost laughable you know I don’t think people believe us I’m not a skinny person I’m you know kind of overweight but I’m gonna show you what my stomach looks like I am NOT pushing my stomach out this is what bloating has done oh my god when I eat I’m I’m full right away I have early satiety protein is difficult getting protein into me I stuff I try to eat eggs eggs can get really tiresome after a while cheese is okay but I don’t like to overdo on the cheese I’m also diabetic fingers crossed though my diabetes is controlled 100% with my diet which is totally awesome my a1c was normal the last time for the first time I think in years and even though I have a family predisposition for diabetes I was on prednisone like many of you for a long time and the prednisone kind of just it pumped me into pumped me into diabetes as well as the prednisone I take two different medications for my blood pressure my blood pressure has been spiking it’s spiked quite a lot to 250 over 200 that landed me in the hospital I take my blood pressure every single day my blood pressure keeps running high then I met my rheumatologist know right away and they’ve been upping and up being my blood pressure medications from what my pharmacist told me they just keep throwing more and more medications on the amlodipine that I take for my blood pressure also supposedly helps with the Reynaud which would be awesome being in on the East Coast in the wintertime like I said really tough and if any of you saw my video before I don’t want to scare anybody but I I did have hand surgery I did I did lose a finger I lost my right index finger and that is because I had a huge cow cenotes that grew and ate right through my ate right through my knuckles I’m gonna try to get a picture of that on here I don’t know if I can I’m sure I can I’ve never never done it before but I’ve got sons that are tech-savvy so I’ll ask them to help me out and I also take medications for pain I have very severe joint issues and what they call mixed connective tissue disease I think is his scleroderma rheumatoid arthritis Sjogren’s and lupus and so far the only one I don’t have is lupus so I have kind of some waffle joint issues and I take two meds or paint I’ve been seeing a pain specialist and that was another that was another fun adventure because like anybody else I don’t think they really understand much about scleroderma and our of issues and they can’t treat us they can’t pay us with the same brush they treat everybody else but same with a pulmonary specialist I have some interstitial lung disease pulmonary fibrosis and now I have some pulmonary arterial hypertension right now it’s mild but I need to keep keep an eye on that the first pulmonologist i saw in california said oh you’ve got to lure me you’re gonna need a double lung transplant and I said well when was the last time you really studied the new medications that are out to treat pulmonary arterial hypertension and pulmonary fibrosis and scleroderma patients and I I spent the next half hour educating him because I had just been to one of his third or my foundation meetings and hurled out all the new stuff that’s coming out to keep us alive and who was like oh thank you very much for spending this time with me I’ve never met a patient who is better educated and I felt like saying I never met a doctor who was so poorly educated that we don’t go there so in kind of

desperation everything is like oh you’re it can’t hurt I bought myself a juicer this week tried mine that’s kind enough to give me a nice gift card for Amazon and and with it I bought myself a juicer here is my juicers it is pretty cool the thing I like about it is it’s got suction cups so it keeps it really stable on the base it is a Q essential essential essential juicer which I don’t know one juicer from another I know there are different kinds of juicers there’s the kind that’s a macerator that grinds it very slowly and apparently the pulp is very dry and it gets the maximum amount and make sure our nutrients with all that out this one is a centrifugal which just kind of goes around in circles with it like an like really an old-fashioned grater I guess and greets everything I have not used it yet but I did go out to the store and I bought myself all kinds of you whole-person vegetable I don’t know if you can see them off but um on them straight I got uh I got this thing a grapefruit I got a bunch of grapefruits I got some juice oranges a lot of them used ginger and ginger has always been something like my mom when I was a kid she would have me drink ginger ale if I had a stomachache ginger is supposedly good for digestive ailments I’m kind of sensitive to ginger so I’m I’m not gonna use it for my first juicing experiences I’m gonna wait and see how I tolerate this stuff I got a couple big bags of carrots I got a few different kinds of apples I got Gala and they got McIntosh I got Granny Smith I got I think it’s cameo cameo ambrosia maybe I love apples and a huge Apple fan and I slice my apples up very thin and I chew them very well there’s big applesauce in my mouth because I just love them and they’re so good for you and I’m an apple a day sometimes too I like to experiment with them all I have my favorites and I’ve got lemons and limes I’m gonna do some juicing as well when I got kale I like kale and celery and cucumbers I cut this in half because well I’ll tell you about the recipe and I got pears and with the juicing too not juicing but you can’t juice bananas but you can put them in the blender so I got myself bananas I got some berries I have my plain yogurt I had almond milk like coconut water so for all these fruits and vegetables and I got a gigantic amount was just over 30 so this this is gonna last me a week at least I’ve got maybe six bags I got two giant bucks bunches of kale and they were a dollar seventy-five each and the bags of apples were three pounds or five pounds for two or three dollars it’s my local produce place here in South Jersey so I didn’t have to go to the grocery store and spend a ton of money real juicing people will probably look this and be horrified but I’m not doing juicing for the same reasons other people are doing it I’m doing it because I have a hard time eating and uh I love salad but I just can’t do it can’t digest it real now I’m hoping that I can digest the vegetables better than even my homemade vegetable soup and same goes for the smoothies right I I have to admit that as a scleroderma patient I’m very anxious about having to become one of those people who can’t eat at all I don’t want to be in a bed and have to be on TPN nobody does that’s that’s not living and in my mind as far as the juicing people go – I’m gonna keep – my coffee I keep I have coffee in the morning I know that it it can cause heartburn in people though I have it early in the day and I don’t have it again during the day I don’t drink carbonated beverages at all I only ever drink water or herbal tea I like chamomile I’m not a big green tea fan but I go to my I go online and I and I order some fresh fresh leaf tea and through it myself and that’s really all

I’ll drink in a day is is my herbal tea and my water and now I will try these I I hope that they don’t fill me up too much that’s that’s one of the questions that I have you know so I’m inviting you to watch my first juicing experience these things don’t take very long for my understand and from what I’ve read you’re better off taking your leafy greens and they said rolling them up seduce them I prepared my juicer I got all my all my ingredients and I put a bag and the waste things so that it’ll be easier to throw away all the waste wish me luck I know it’s kind of scary when I smile isn’t it I don’t really have another thing is I lost my hair so I’m wearing I’m wearing a wig this is one of my favorite ones I like it but I do kind of change change them up as everybody in my office know I do work part-time as a bookkeeper when I moved back to New Jersey I was an office manager for a dental offices for the past thirty years that’s what I did in my regular life when I got diagnosed and was so sick I I couldn’t work full-time anymore and I really can’t even work part-time anymore but my old employer who is a wonderful person offered me to come back to do his bookkeeping and help with his billing and I can kind of do that on my own I don’t have to go into the office I can do a lot from home and he I can’t say enough good about him keeps keeps my brain lively my body can go to wrack and ruin but I don’t want my brain to but the office is used to me being a little on the eccentric side and coming in with different hair whenever I feel like it so back to the juicing I hope I did stuff too much in there I think I put too much in there this has one of the wider openings and some of the other ones that I saw I’m hoping my goodness I have juice coming out see no here you go that’s in juice in there I’m not done yet it just said to turn it off when you’re in between putting stuff in we also you don’t burn the matter out if I did pack that kale in there a little too much and it said to to put something hard in after your greens I guess to clear out the green thingy

Wow Wow I said tilts it didn’t meet you sooner but you’d be stuck in there and I don’t see any which is good because that thing’s kind of heavy well this is what I ended up with this was three leaves of kale three stalks of celery a Hulk hair a half an apple and a half of a large really large cucumber I didn’t want to put the whole cucumber in there yep so that’s what I got might be a spoon and stir it and see what we have yours found on the top which they learned that in the videos this recipe I’ve been like everybody else on the planet I think I’ve seen fat sick and nearly dead not that I believe and and everything that he said I would never go on a juice fast not with my health condition but I think there might be a place where in my life we’ll find out let’s see what it tastes like it’s green alright Cheers it smells vaguely of pear so yeah it’s pretty good I can drink that goes down easily I think it’ll give me a lot fewer issues then I already have with eating perhaps kind of late in the evening and I’m having this now because I didn’t field all today I don’t know and I spent a good part of the day in bed and lying flat and eating don’t go well together and most of us player means have to make the choice between eating and sleeping if we eat we can’t sleep than if we sleep can’t eat so I had my soup a good bit earlier I’m gonna have this now and then I’ll go to bed probably in a couple three hours this this is all I’m gonna do right now but I will check in again in a few days I’m sorry to show you my nasty bloated middle but if any of you have the same issues and if this can help if it can help me l-little help you even better so thanks for watching and I’m gonna try to post that picture of my finger I can’t I’ll get it on here somewhere or either but I’m gonna make another video in a few days see how I’m getting on thanks for watching and have a great day

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