Feeling Lost & Confused

[Gabes-Apg]

P.S. I have my feet in Epson salt Gabes ;)

so have I - after washing and preparing 7 classic chevys for a big two day event in two weeks time!

2 x 1937, 1 x 1955, 1 x 1956, 3 x 1957 chevy's
there was 4 of us doing the work so it was not too bad, but we are having an extended summer here in Aus and it got up to 79F so it was hot work
highlight was that I got to drive my favourite, the 1957 2 door cherry red belair delux for 30 mins.


REgarding the magnesium, if you (and your family) have reading time, spending the $15 for the Dr Carolyn Dean book - Magnesium Miracle will interest you. Fantastic explanations for a multitude of health conditions and loads of references in the back to support what is written.
my insulin resistance issues have faded since fixing magnesium deficiency.
some key info from the chapters is in this section of the forum
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20099

[Rebecca2z]

That foot bath feels good, how long do you soak ?
I can't do the water too hot, I have lots of burning in my feet.

Oh your day sounds lovely but a lot of work ! Now driving that 957 2 door cherry red Belair delux would be a blast ! I think you are in that in your avatar right ? I am surprised it is that hot there - it's fall there right now isn't it ?

I will get that book for sure, I am anxious to read it and I believe that is a book I will buy many of so I can give them out, that is what I am going to do with Tex's books too. Best gift is a book !

Oh and yah, I have reading time alright... hooked up to a feeding tube, 92 pounds and needing a bathroom every 5 minutes I am not able to do much else! I love to read thankfully.

Really happy you took the time to share with me Dr Carolyn Dean's book and I know I will benefit from it.
Have a good evening !

Hugs, Rebecca

[Vanessa]

Magnesium does lower BP, but from what I can tell it won't lower an already low BP. Since it is not a med, I think it acts as more of a balancer. It will bring your body into balance, it may even work to increase a BP that is dangerously low......Provided your kidneys are in good working order, I would think you would excrete the extra mag you couldn't utilize before it would dangerously effect BP. I'm totally making an educated guess here.

And Rebecca...whew you have quite the story. Have you let go and found forgiveness for the medical community. I find it hard to do that myself. Knowing I may have to deal with them in the future someday brings on not so cuddly warm feelings thats for sure....

[dfpowell]

Rebecca,

I have had CC for about 10 years, I was diagnosed in 2011. Previously I tried Entocort and Pepto bismol for extended periods of time they both helped some what, but I did not want to be on either of them forever. When I found this forum 4 years ago I made significant diet changes, however, I feel the diet that helped me the most is the Auto Immune Protocol, but I did not eat all of the fiber they encourage. I followed the diet strictly for about 9 months along with taking the Cholestyramine. I have since been able to expand my diet but have stuck with gluten free, soy free, egg free and dairy free. My diet tends to be high in fats, and I have found it helpful to keep track of my nutrient intake using the website Cron-o-meter. Also, my goal with the Cholestyramine is to eventually wean off, however I want to be stable for a year before I do that completely.

I hope this helps, everyone seems to find what works for them.

[Rebecca2z]

Thank you Vanessa, I think your comments make sense about the Magnesium. I have been taking a lot of it for the last 2-3 years. Powder, pills and spray oils. I stopped it all as I thought it was the cause for my D. I didn't notice my BP being any different on it or off it. I just can't make a BP due to my autonomic failure.

"let go and found forgiveness for the medical community"..... well there's a big black hole !

My body has Ehlers Danlos and I think who I am on a soulful level has it too. I am flexible in body, mind & spirit. I have learned that doctors are not taught how to get people well from their diseases. They are never taught how to get a patient truly well from disease, but they are taught how to give harmful drugs that cover up the symptoms of the disease, which then destroy the patient’s immune system, the very thing we need to get us well and keep us that way.

I have a hard time letting go of some of my anger about how the system works. I blame the drug companies, they have control over medical schools and the training of doctors because drug companies provide the bulk of the research money for medical school research ......to make more drugs.

The most valuable lesson I have learned is how to choose a doctor who can help me help myself. I learned to look at the specialty of each doctor, what has he/she published, how passionate are they, do they give talks, where did they receive their education, do they think outside the box ( published journal articles will have some clues on this) . I research each doctor as carefully as I can before I request a referral. I can tell the second they walk in the room if they have a healing heart as well as confidence and if they will be able to accept that I may know more than them about my conditions and allow me to work along side of them to find acceptable solutions.

I always apologize to each new doctor for dumping my complicated case on them, and let them know what I expect and what I don't. There is always a sigh of relief from the doctor after I explain my expectations, which are pretty low by the way.

If I get it wrong and I often do with my little system above, I forgive myself and move on with the goal to do better next time. We can only do the best we can with the tools we have. I feel this is my ship and I am captain, so no need to forgive anyone else but myself.

In spite of all I have going on I have never been depressed, how much harder that would make this journey. I am always very engaged in life. I have cried many tears along the way but nothing ever sticks. I have often thought about depression and wondered why I am not depressed and thought I should be depressed, doctors said I should be depressed, but they are shocked to find I am not - once I even took a day and said OK I am going to be depressed...lol ....this lasted about 3 min, and I was laughing at myself. I am just not wired that way I guess. My strongest asset is adaptability, so that's pretty handy considering what I was born with.

well I am babbling.... thanks for listening and thanks for your insight on the Mag & low BP !
Hugs,
Rebecca

[Rebecca2z]

Thanks Donna, that is a pretty handy app ( cronometer) I would load that but fear my pages would be mostly empty right now.

I wonder if you would mind sharing some of the fats you are incorporating into your diet, I am very much in need of some ideas.
Maybe you have written about this and could just provide a link.

Can you have avocado's or mayo with MC/CC ? I was mostly on liquid nutrition, before the MC hit 6 months ago and it is maybe part of the cause of my MC. ( Although I don't feel just 1 thing is the cause) I was drinking Orgain- Grass Fed and a low FODMAP commercial drink to sustain myself. I am scared to go back to those liquid diets. My husband contacted Orgain to ask about the FODMAPs in their nutritional (< insert laughter at word 'nutritional' ) drink and they said:
"Those that are on the FODMAP diet have reported good results with our grass fed shakes:"

This is lousy nutrition, believe me I know this, but with this gastroparesis I was desperate to find something I could take in and get off the TPN I was on for 2 years, the Orgain was a step up from the TPN. I am weak, in pain, and fatigued and had to have something I could just reach for and that didn't require a lot of work to prepare.

I was told I need to take in 4 of those Orgains a day, I was only able to drink 1 and 1/2 Orgains on most days, sometimes only 1. They are very filling. BUT I did get off the TPN and for 8 months held onto some weight- until the MC started. So well here is my problem, do I risk going back to those or try to find some foods with fat & protein that will work with my gastroparesis .

I have so much to learn, and I find the fact that the motility in my GI system is so bad, I am not left with many choices.. Meat is a problem. Dairy would be helpful but I think I do have a problem with dairy in regards to my WD. This being said I have been off all of the nutritional drinks for almost 2 weeks and nothing has changed in regards to the WD.

So what the heck, I might as well go back to them and with the new cholestyramine on board maybe this is my path to gaining some weight, controlling the WD and getting off the feeding tube.

I think I am realizing after running this by you all I need to lower my expectations on the quality of nutrition I am going to be able to have. It's one thing to have MC and other AI issues but having gastroparesis is a major player in what I can do. Hmmmm, seems I am having a light bulb moment here. lol ........this is a good thing, and just think my posts can be shorter !! Sometimes I can be so dense !!!

Thanks so much Donna for helping me and for sharing your personal journey.
Hugs, Rebecca

[tex]

Thanks Tex, I will try the lamb, but since having this gastroparesis I have not been able to digest any meat what so ever. It just sits in my gut and rots till I vomit it which I can't do very well - Maybe a ground lamb. I will try anything in small amounts and see how I do.

The main digestive ingredient for proper digestion of meat is gastric acid. You may be very low on stomach acid. Betaine HCL can remedy that if used properly. And eventually the parietal cells of your stomach may begin to regain their ability to produce more acid. The parietal cells are activated by histamine. Histamine release in the stomach is triggered by the sight, smell, and thought (anticipation) of food soon to be ingested. But without a normal hunger response, clearly part of the normal functioning of the enteric nervous system may be compromised to cause a breakdown in histamine release or in the activation process at the parietal cell receptors.

I had a Radionuclide gastric emptying study test ( 5 dreadful hours of being wheeled into a machine over and over) they had me eat scrambled eggs and in the 5 hours it didn't go anywhere. In fact I had to have the scan done twice the next day to see where that egg was, and it was still in there.

Another possible cause of gastroparesis that most medical professionals are probably not aware of is the fact that the enteric nervous system will not allow the chyme (partially-digested stomach contents) to pass into the duodenum unless it "knows" that the pancreas is capable of supplying sufficient bicarbonate to neutralize the acidity of the chyme. Otherwise the acid would digest the mucosa of the duodenum because unlike the lining of the stomach, the epithelium of the small intestine is not capable of withstanding exposure to low pH levels.

I blame everything on EDS because if my connective tissue was normal the uterus wouldn't have done that at 21 years of age. When I was 21 they didn't know I had EDS. So well we do the best we can and on ward we go.
I explain all that so people know surgeries on,in or around your abdomen can have risks.

Yes connective tissue disorders can cause a lot of problems. Virtually everyone who has abdominal surgery though, tends to develop adhesions. I had my first abdominal surgery in 2005. When I had another in 2010, there were adhesions all over my guts. It really complicated the surgery the second time.

Tonight I ate 1 shrimp cooked in olive oil and 2 Tablespoons of white beautiful fluffy jasmine rice, and it went right through me... WD !! I am furious !! I had no seasoning on it what so ever, no salt, no pepper and no garilc... I cooked it in a teeny tiny bit of oil.... GRRrrr what the heck !! I am doomed :(

Wait! Don't give up yet. We've all experienced that. It takes a while for the reactions to stop. For months we may experience unexplained reactions, simply because there are still a lot of antibodies floating around, and there needs to be more healing.

You should be getting BIG royalties, something's not right there ! Thanks for including the link, I will get one copy and one down load.

Other than a few members of this forum, I can't convince anyone to read it even when it's free. Everyone wants to read fiction by best-selling authors. "sigh"

Tex

[Gabes-Apg]

hope you are having a better day today.

re my foot soaks, i find 20 mins is good timing for me.
so far as water temp, go with what suits you.

in MC world there is no right way or wrong way per say - there is your way.
from all the information and suggestions here, whether it be diet, lifestyle changes, medication, etc adjust them to suit what works best for you.

Avocado can be high histamine so if you are reacting to high histamine ingredients I would limit intake a bit. down the track once we get key nutritional imbalances resolved then you will be able to increase intake

as you start to make the changes based on what you are learning here, keep expectations real. your body has been through alot and it will take time for the inflammation to reduce tracking things day by day and overthinking things a bit can increase the stress levels. maybe write it on a post it note and put it in the bathroom "i am on the right path to heal"
I am fairly confident that the colestryamine will take away some of the intensity of WD/multiple toilet trips.

I need to lower my expectations on the quality of nutrition I am going to be able to have.

you may be surprised, even with the limited base of ingredients, there are not many gaps in balanced nutrition. Current day, outside of the USA, there are many many populations of people in various countries across the earth - northern hemisphere, southern hemisphere that live current day on small base of ingredients. in these populations there are minimal to no health issues like diabetes, IBD's, high cancer rates, AI issues.
I heard in a podcast the other day that 1950's america there was only 50 different food products in the supermarket. now it is over 400.
I have been on bland small amount of ingredients eating plan for 7 years. 90% of my nutrient issues are due to life long health issues / excess of toxins due to years of leaky gut / nutritional imbalances / stressful life. not due to my eating plan.

coffee wise - I have one long black coffee every day. I use organic fresh ground beans that I brew italian style with stovetop maker.
getting a nice flavoured bean that is not bitter means i enjoy black coffee. good quality coffee has no toxins/heavy metals or risk of gluten soy etc

yes - the avatar is me in the 57.
here is a discussion about it and the 'fleet' of Chevy's my brother owns and the car show environment that I get to be part of
http://www.perskyfarms.com/phpBB2/viewt ... chev+dance

[Rebecca2z]

Found these, The Organic Quinoa Flour is some what concerning after what Tex told me about Quinoa

Komplete shakes by Kate Farms For Food Sensitivities
https://katefarms.com/collections/for-f ... /chocolate

[tex]

I can't do the water too hot, I have lots of burning in my feet.

That's a symptom of peripheral neuropathy, and it's almost surely due to a vitamin B-12 deficiency. Been there, done that.

Magnesium does lower BP, but from what I can tell it won't lower an already low BP. Since it is not a med, I think it acts as more of a balancer. It will bring your body into balance, it may even work to increase a BP that is dangerously low......Provided your kidneys are in good working order, I would think you would excrete the extra mag you couldn't utilize before it would dangerously effect BP. I'm totally making an educated guess here.

I "think" you're right, but my concern is that it might possibly interfere/counter the Northera. But of course that's just a guess also. A little testing would reveal the answer.

In spite of all I have going on I have never been depressed, how much harder that would make this journey.

Depression is a very common symptom of magnesium deficiency, and I'm convinced that most cases of depression are due to a chronic magnesium deficiency. So maybe you're not magnesium deficient, after all. However, I have to say that even when my magnesium deficiency was at a severe level, I can't say that I ever felt depressed, either.

Tex

[Rebecca2z]

Thanks Tex and Gabes,
I am so appreciative of all your posts and your grasp of all this is amazing.

Tex in regards to gastric acid, when this MC showed up 6 months along with that was a worsening of my acid reflux, I was having major issues with that anyways but along with the WD the reflux became much worse. The doctors at Stanford want me to do what is called fundoplication surgery because my reflux is that bad. I would never ever consider doing this procedure due to my EDS, I wouldn't risk it, I may never eat anything again. Not going to risk it. But when you speak of of being low on stomach acid would increasing that make my reflux even worse?

On one of my tests it says I have abnormal mucosa of the duodenum, does this say anything of value?

Thanks Gabes, I did 30 min in the foot soak ! It really did make me relax !

Those are awesome photo's and wow I wish your avatar could show the whole picture ! What fun !
Thank you for sharing, I didn't know there was a photo section on here !

Hugs, Rebecca

[Rebecca2z]

Thanks Tex, I have a condition ( besides the small fiber neuropathy) in my feet called Erythromelalgia , this comes and goes and of course worse in the summer. We are talking major red feet and HOT. All this neurological stuff came to light exactly 5 years ago. I can see how my nutritional intake due to the gastroparisis was a major reason.

I am happy hear you don't have depression either Tex, I see so many with chronic disease suffer more from that than the disease itself.

Oh man why did this MC have to show up..... That is really complicating my life !! LOL

Gabes your coffee sounds like mine, I admit it .....I am a coffee snob, I only drink that 1 cup a day but it has to be over the top great !

Hugs,
Rebecca

[Gabes-Apg]

Oh man why did this MC have to show up..... That is really complicating my life !! LOL

it may feel like this today

but in a few weeks when the suggestions you found here start to work, you will see it as a gift, a meant to be, a big hug from the universe.

you found people that 'get it' with the multiple /complex health issues
you found very affordable accessible solutions to the root causes of the health issues
and supporting caring people that want to help you...

for me the MC diagnosis explained years of symptoms and issues (that mainstream could not diagnose), after years of alienation i found a great bunch of people that 'get it', it forced me to make changes in my life that I now embrace and treasure, it gave some most wonderful friends in different parts of the world that i would not have met otherwise, it has given me knowledge that I have been able to share and help others.

I have had connective tissue issues, multiple bowel surgeries with loads of adhesion ( bowel is adhered to left ovary) all of these have improved vastly since sticking with low inflammation low toxin eating plan and lifestyle, clearing toxins and fixing nutrient imbalances. we can heal, so long as we have the right inputs.

abnormal mucosa of the duodenum, - excess inflammation
I did 30 min in the foot soak ! It really did make me relax ! - see you are on the right path... it might seem like baby steps, a good motto is 'progress not perfection'

not everyone gets depression - there are multiple causes. bit like MC - there are multiple inputs into why MC starts
main aspects are genetics, epigentics (food, lifestyle, emotional wellbeing through out life), medications /toxins/infections

Dr William Walsh who has written alot about nutritional balancing etc has this theory on reasons
https://integrativedepressionsolutions. ... epression/

in the graph on the link - some people may only have 1 or 2 or 3 of the biochemical causes. (I had pretty much all of them when my health was at its worst, with 3 years of focussed supplementation I am now only dealing with 2 of them)

[dfpowell]

Rebecca,

To increase the fat in my diet I eat high fat meats, which sounds like it may not be an option for you. Also, lots of bacon, is that something you could tolerate?
Cooking with olive and coconut oil is another source of fat. Can you tolerate nut flours such as almond flour, that is also another high fat food source. If so, I could give you a scone recipe that has coconut oil and almond flour and is a good source of calories. Sounds like you are getting some good ideas from Tex and Gabes, slow changes can help you figure out what is working or not. I have found keeping a journal to be helpful, something I have done for 4 years.
Take care,

[Rebecca2z]

Gabes that is a great a link for someone who struggles with depression, I would think that graph would be very helpful for them. I am thankful to the moon & back I don't have this issue.

It's wonderful to hear about how far you have come, it's a lot of hard work but so worth it ! I know I will figure out what works for me too and I have to accept there's going to be a lot of trail and error.


What's making things so hard is I can't drink the Orgain that was sustaining me before. I seem to react very badly to it now. I have ordered a new one from Kates Farm and hope that this can see me through the trail & error period. As things sit now- since I have been home from hospital ( last week ) I have had only 1 shrimp and the 2 tablespoons of rice last night, and a handful of Chex cereal.....as there is nothing I can eat either due to the gastroparesis or now this MC.

I am hoping this liquid nutritional product I just ordered will fill a gap temporarily. This is what I feel is the right direction for my immediate situation. I must get some protein & fats and I have yet to come up with anything that can be taken in on a regular basis or in a big enough amount. What works food wise for the gastroparisis is so not working for the MC... The feeding tube is running for 14 hours a day and that is fine for now, I hate it and I know the stuff is poison but that's where I am.

I am still doing better than I was when in hospital and I am enjoying my husband, home and animals. The weather is glorious here in Nothern Ca.
I am actually going to make a flourless cake today - only has 3 ingred - lots eggs ;(
It's not for me - but for my mother-in-law. She has a group of friends coming Monday afternoon and I always bake for her. I am a terrible cook but an excellent baker ! So I am looking forward to some good baking therapy !!

Hope you all are having a fun weekend !
Hugs, Rebecca