savinggrace

[marie123]

Hi Grace. I am sorry you felt horrible yesterday. What was going on? Looks like your getting low on the trileptal. What dose are you on now? Marie.

[marie123]

Hi there Grace. How was your Thanksgiving this year? I hope you saw your grandkids. It's hard with covid to see people. I could not have guests or go anywhere if I wanted to since I was under quarantine after being exposed.

 

Marie

[Altostrata]

Hello, @savinggrace, how are you?

[Sicksagittarius]

@savinggrace Hi there! i read your story and was wondering how youre doing with healing your stomach issues. My naturopath is pushing me to take probiotics and enzymes etc but I couldnt tolerate them. I was sent into a a current months long wave from a multivitamin and trying probiotics at the same time. IS it possible to heal gut issues with just diet and stress relief? I have lots of issues due to taking traditional medicine like antibiotics, antiinflammatories, antispasmodics, PPIs for months. For example, I have c diff, giardia, candida, h pylori etc. Can these heal on their own as your brain heals its nervous system without the use of other interventions such as supplements? I follow an antihistamine, anti-inflammatory, low fodmap diet. 

[Ariel]

Hi @savinggrace

How are you going?

 

Just want to say how much I respect your comments and posts here on SA. The kindness, compassion, wisdom, honesty with which you extend yourself are truly admirable. Your insights are invaluable. 

 

Your story moves me, you have been through so much. I am sorry for all the suffering you have been through and are going through. I am blown away by your courage and strength. 

 

Thank you for your many contributions. You have helped me, and I'm certainly not the only one.

I wish you peace and relief on your healing journey.

A.

[savinggrace]

Ariel,

This post literally moved me to tears. Every day is a huge struggle, and today is particularly bad. I can’t seem to help myself, but if my lifelong struggle is worth anything, it is what I can share that might help someone else. Thank you so much. I realize that I could be deemed a failure, or weak by many here, but I know who I am, how hard I try and suffer, so I try to rise above the comparisons and help someone else, if I can. Thank you again. 
 

Grace

[Ariel]

Dear Grace,

You are a champion by all accounts. Don't let anyone tell you otherwise. 

 

I'm so sorry you are struggling.

I wish I could ease your burden. 

 

I am reaching out my hand

lending you my shoulder

offering you my arm

holding you in my heart. 

 

Your message today helps me so much. Thank you for your healing touch. 

 

I'll be thinking of you. 

Love and gratitude,

A. 

 

[savinggrace]

9 minutes ago, Ariel said:

Dear Grace,

You are a champion by all accounts. Don't let anyone tell you otherwise. 

 

I'm so sorry you are struggling.

I wish I could ease your burden. 

 

I am reaching out my hand

lending you my shoulder

offering you my arm

holding you in my heart. 

 

Your message today helps me so much. Thank you for your healing touch. 

 

I'll be thinking of you. 

Love and gratitude,

A. 

 

That is beautiful,Ariel. I will be reading your story soon. I am glad my message helped you! It’s interesting how the mere act of helping someone else can soothe us. I guess that is what SA is here for. 
 

Grace

[savinggrace]

On 9/24/2021 at 8:43 PM, Sicksagittarius said:

@savinggrace Hi there! i read your story and was wondering how youre doing with healing your stomach issues. My naturopath is pushing me to take probiotics and enzymes etc but I couldnt tolerate them. I was sent into a a current months long wave from a multivitamin and trying probiotics at the same time. IS it possible to heal gut issues with just diet and stress relief? I have lots of issues due to taking traditional medicine like antibiotics, antiinflammatories, antispasmodics, PPIs for months. For example, I have c diff, giardia, candida, h pylori etc. Can these heal on their own as your brain heals its nervous system without the use of other interventions such as supplements? I follow an antihistamine, anti-inflammatory, low fodmap diet. 

 

[savinggrace]

Hi Sicksaggitarius!

 

I am so very sorry.  I never saw this post and I don't know if you will every see this response.  Just in case, I am going to respond.  (I used to get notifications if someone posted in my thread which seldom happened so I never check)  I feel very badly that I seemed to have ignored your questions.

 

I hear you loud and clear.  Hopefully, by now, you are finding some relief for your very serious gut problems.  You have one great big thing going for you.  You are NOT on any psychiatric drugs and you have a chance of healing and maybe your body will start to "receive" the nutrients and meds you need for proper digestion.

 

I am still on my polypharmacy of drugs, though I try to quit a few crumbs at a time.  I am incredibly sensitive to anything that has the possibility of helping.  Digestive enzymes, vitamins, and probiotics are something I sorely need but they put me into worse withdrawal with just one tiny little dose.  So I have tried to heal my gut with just diet and lifestyle changes/control but I am failing BECAUSE I am still on the drugs.  You are not.  I think, for you, it is a waiting game and you will eventually be able to accept and benefit from therapeutic supplements and foods.

 

It is absolutely insidious how incredibly sensitized these drugs can make people like us.  I literally try opening capsules of things I need and trying tiny little doses.  I do the same with food.  I will try a new food like two grapes or 2 asparagus spears.  My body/brain will not accept change.

 

And so I suffer.  I currently am having excruciating pain in my stomach/pancreas area (for about 3-4 weeks) and my gastroenterologist won't see me as he feels he can't help me and I guess he is right...I can't take his drugs.  I know I need serious digestive enzymes but I can't take them...they will totally unglue me!  Do I go crazy from a rapid withdrawal or do I suffer with digestive and body pain?  I choose sanity though I am not sure how much longer I am going to be able to tolerate this.  My GI doctor actually told one of his nurses to tell me to "go see a psychiatrist" at one time (which he denied)  No, thank you.  I will end up on more and higher doses of drugs.   Doctors are supposed to "do no harm" but they have harmed me by their negligence and their dismissal (insinuating it is all anxiety, depression and stress)  Well, at 88#, it seems like someone should sit up and take notice but instead I suffer alone. 

 

I wish I could tell you that just diet and lifestyle choices will heal you but you do have some serious medical problems (or you did when you wrote so long ago...sorry again!)  I think following the diets that you are following is your best choice, for now, although eventually you can end us seriously malnourished like I have.  Also I have been on the same diets you are, and even more restrictions than that, and eventually I believe we become sensitized to the foods we are eating over and over again.  I would encourage you to try and introduce a new food now and then.  I have successfully added two apple slices/day to my diet, but it took me many months, and honestly, I don't know if I am reacting to it or not because I hurt all the time but I don't think I am worse.  Try just a little bit of new foods with essential nutrients when you feel like you can.  That is about all I can tell you to do, besides just giving it time.

 

When we are as sensitized as you and I are, the best we can do is keep trying, and you, my friend, are off these toxic drugs, and are healing more and more every day, even though it doesn't feel like it.

 

I hope you are doing better than when you wrote to me this past summer.  I wish you peace and healing.  Again my apologies for not responding so many months ago...

 

Grace

[Ariel]

@Sicksagittarius

savinggrace has responded to your inquiry, see post above 

 

[Ariel]

@savinggrace

Thinking of you, dear Grace. 

No pressure to respond, just leaving you a little note to say hi. 

I hold you in my heart and prayers.

Wishing you peace, relief, joy, meaning on your healing journey,

A.

[savinggrace]

Hi Ariel,

 

I just noticed this post today.  Thank you so much for thinking of me.  This is an endlessly, long journey and often quite lonely.

 

I notice you posting more and more.  I am not sure you can wrap your head around how uplifting a kind word and thoughtful advice given in a caring, non-judgmental manner can make a huge difference in someone's day.

 

Thank you.

I hope you are taking care of yourself as well.

 

Grace

[savinggrace]

Hi all,

 

I have to have a colonoscopy and upper endoscropy, which I have put off as long as I can.  The last two procedures like this I  had (one 3 years ago and the other 10 years)  done at a hospital, because they could only use propofol at a hospital. (something to do with Michael Jackson, I was told, but that was when this policy changed)  At outpatient centers they use versed (a benzo) and and maybe fentanyl, though I could probably request no fentanyl.  I feel like I made this choice (not to have versed) the last few times based on info I learned here.   I know versed is a very fast-acting benzo.  What would this do to me?  Is it likely to de-stablize me more than the propofol?  The out-patient center is far less expensive but I wanted to do whatever is the least upsetting to my already very sensitized nervous system.  I will be sensitizing it just with the prep as I react to the agents they use for prep.  Any opinions or logic about this would be really appreciated.  I have to make a decision on this before I see my GI doc next week.

 

Thank you.

Grace

[Ninabird]

@savinggrace

I have one scheduled for August. I was worried about the prep and procedure. I wanted to ask for no anaesthesia. 
 

Following this thread if that’s ok w you. 
 

NB

[savinggrace]

Hope we get an answer that makes us both more comfortable!

 

Sharing questions, support and answers is what this forum is about. 
 

Grace

[ChessieCat]

3 hours ago, savinggrace said:

Any opinions or logic about this would be really appreciated.  I have to make a decision on this before I see my GI doc next week.

 

You could tell them that you have had issues before with other things and request that they start with a low dose and increase it if needed.

[savinggrace]

Thanks, Chessie.  I will surely ask for the lowest dose of "whatever" that they can manage me with the question would be is propofol worse than verced or vice versa.  Maybe I will post this in the benzo thread?

 

Grace

[DataGuy]

Hi @savinggrace,

 

Can you direct me to a post where you describe what you have tried for diet? Have you tried elimination diets etc.? I had quite a bit problem with food triggering symptoms as well. Are there particular foods that trigger your symptoms worse than others?

 

I will check out the anesthetics in the next little while to see if one is preferable. But yes, definitely ask the doctor for an alternative option

[savinggrace]

Hi DataGuy,

It’s late and I am very tired but I look forward to talking with you about this more. Tomorrow?

 

Grace

[savinggrace]

Hello DataGuy,

 

This is a huge question and even I don't want to go back through my thread to see what I posted regarding diet!

 

I  will start with the things I absolutely avoid...milk and gluten (inflammatory foods) casein,(tested sky high on IgG testing)  soy,  high histamine foods, high FODMAP foods, citrus and spices (high histamine).  I cannot digest raw foods because of gastroparesis.  I avoid high oxalate foods (which eliminates a lot of healthy foods) because I tested high and am symptomic of oxalosis.  I do not have caffeine or alcohol and try to keep sugar as low as I can (preferably eating no added sugar)  I don't digest meat well, but my body and blood sugar demand protein so I eat softly cooked chicken daily.  I eat all organic food.

 

I probably shouldn't eat eggs but I get a lot of my calories from homemade "bread"...think muffin-like batter) made with organic ground flax seed, organic ground and gluten free oats, organic olive oil, water, salt, baking powder and about 1/6 egg per serving.  I eat two servings of this/day but it is high in fat.  It is essential to keep my gut moving.  I seem to tolerate it well.  It is calorie dense.  Without it, I don't think I could live on the amount of calories I tolerate from just meat and a few veggies.  There is no sugar in it other than the sugar naturally occuring with the carbs in the oats)  I do not seem to tolerate alternative gluten-free flours so I stay away from them.  I also don't seem to tolerate other grains well and have severe blood sugar disregulation if I eat even small serving.  The same goes for beans and legumes; small servings wreak havoc with my blood sugar.

 

So I eat little or no processed food.  The vegetables I tolerate are broccoli and squashes.  Sometimes I can eat 3-4 brussel sprouts.  I tried recently to add a few slices of apple/day but that seemed to make motility worse.  I only drink water.

 

I know I gave you a lot of information here but it includes the foods I eat.  I seldom eat anything else.  I often experiment with new veggies, esp.  Today I steamed some Romaine lettuce leaves as they are high in folate and I need folate.  I did not tolerate this well last time around, but I am trying again.

 

When I am starving between meals (not that often as I feel full and bloated most of the time) I eat a thin organic brown rice cake w/ 1 1/2 t. organic sunflower seed butter.  I hesitate to eat nuts at all because of lifelong mold allergy.

 

I have eaten these foods for almost 8 years now.  I do not eat in restaurants.  I only eat foods prepared in our home.  It's a truly miserable way to live.  I have spent the better part of 8 years trying to figure out a better way.  There is a reason that I don't eat every food not listed here.

 

Feel free to ask questions.  Any advice?  I'll take it!!!  I have worked to no avail with at least 5 dieticians.  They all have their "go-to" answers (for example, the GAPS diet which landed me in the hospital).

 

Thank you for making me re-think what to talk about with my GI on Monday.  As you say, their bread and butter is procedures but I really don't want any.  I am worried about my pancreas, though, as I did an independent stool analysis twice in the last 2 years and there was a big red flag both times. (very low fecal elastase)  My GI dismisses it.  I get pain, often, in my stomach/pancreas area right after I eat.

 

Grace

 

 

 

[savinggrace]

A few more things Data Guy,

 

I wish I tolerated fermented foods.  We have even tried long ferments of homemade sauerkraut.  Ferments are high histamine which I think inflames my bowels.  Pro and pre-biotics have all been a disaster.  Pre-biotics seem to feed the bad bacteria as well as the good so I get pain.  Most pro-biotics mess with my motility.  The more bloated I get, the less I eat.

 

Thanks for caring and asking.

Grace

[DataGuy]

Thanks @savinggrace. Yes, I had a lot of stomach problems and also ate a very limited diet for a long time. I can confirm it is miserable! I'm 4 years off now, but while on the drugs I had plenty of problems with my stomach and couldn't gain weight, and this got much worse when I tapered too fast. 

 

Can you tell me what happened with the GAPS diet? From reading about it, it seems like mostly a ketogenic style diet with natural foods. What did you eat in the time you were on it before you ended up in the hospital? Have you tried any other diets or elimination diets? 

 

Also, you say this started 8 years ago....was there anything that happened to trigger it? Or did it gradually develop? Has it gotten worse recently? Did it get worse with tapering?

[savinggrace]

The GAPS diet gave me severe tachycardia and low blood pressure w/in days and I wasn’t even embracing the whole thing yet. Bone broth is very high histamine. So is sauerkraut juice. 
I did not realize that it was the diet that gave me these symptoms until they couldn’t find any reason for them. As soon as I stopped the bone broth, I was fine. 
 

The happened to me when I took VSL (a very high potency probiotic) as well.  I tried it twice at less than half recommended dose. I had the same cardiac response. 
 

THAT is when I realized the whole histamine thing was one trigger. 
 

Preceding the rapid decline 8 years ago, I ate almost anything though I had starting cutting out milk and had already cut out gluten. 
 

We used to go to Mexico once or twice a year. The last few times we went I got traveler’s diarrhea really badly. 2012.  A GI back then called my syndrome “post infectious IBS”. My colon stopped working. I think the damage went up into my small intestine and caused SIBO.  The gastroparesis is likely caused by a damaged vagus nerve…probably the drugs. Reversing this damage is likely impossible. 
 

I said absolutely no to my GI about domperidone. He refuses to take no for an answer but I actually think it would be quite dangerous for me. I use no drugs to manage my gut. I just keep trying to broaden my diet but not very successfully. 
 

I had been tapering for several years before this all started. I think being on amitriptyline for 20 years, before these current drugs, didn’t do my gut any favors. It resulted in chronic  constipation and I was overweight the whole time I was on it. 
 

I likely need a keto diet but the gastroparesis makes digesting enough meat or protein impossible. I no longer tolerate vegetable-based protein supplements. 
 

Thanks for your interest.  Hope you are getting along okay after what had to have been a brutal taper. 
 

Grace

[DataGuy]

Will just leave this here in case anyone was interested and not following both threads:

 

 

[DataGuy]

Hi @savinggrace,

 

What really helped in withdrawal was the realization that I had a strange sensitivity to carbohydrates. How or why this works I'm not sure. It could have something to do with blood sugar levels. 

 

Basically while on drug (mostly clonazepam) I ate a very high carbohydrate diet and had a lot of trouble with protein and fat. I also could not really gain any weight and it seemed like there was a hard cap on the number of calories I could tolerate in a day. It seems like we had fairly similar problems. I was also offered the domperidone after losing a substantial amount of weight at university. Unfortunately I accepted and I don't think this did me any favors. It did help in the short term though. 

 

After stopping all of my drugs, I continued with the high carb diet, but started losing weight rapidly. In the 3 months after stopping I lost 30lbs. I honestly thought I might die because my stomach didn't seem to work at all. Around month 4 my weight stabilized, and at some point I tried meat and realized I tolerated it surprisingly well.

 

I had similar problems with bloating, constipation and gas. What really helped me was trying the keto diet. After eating like this for a couple days, I began to feel relaxed for the first time in months. It seems like something in carbohydrates (have to assume blood sugar related) revs up my nervous system to very high levels of activity, producing symptoms like gastroparesis, constipation, bloating, restlessness, muscle tension, elevated blood pressure and heart rate etc.

 

The thing is...I had no idea my high carb diet was doing this until I tried keto for a few days, but the relief was fairly dramatic. I am not saying you need to try and do that. It is possible we don't even have the same problem. I kind of hope we do, but I know it is a bit of a shot in the dark. But it may be worth pursuing as a possibility. What I have found is that adding more protein/fat to my diet tends to act as a sort of break on my nervous system, calms things down, and helps relieve bloating and constipation + the other symptoms. It can cause its own problems if I go too far in that direction. I think if I ate the GAPS diet or a diet with only fat and protein I would also experience some pretty severe health problems. I most definitely need some carbs to function. But it may help to gradually add in some protein and fat early in the day to see how it makes you feel. The thing I tolerated best was beef, but also ate quite a bit of cheese, avocados, eggs, and nuts. 

 

I found it interesting that you said you tolerated the homemade bread pretty well even though it is high in fat, and that it seemed essential to get your gut moving. Perhaps you could add more of that or make it even heavier? IDK. I just hope something in here helps you. It was a horrible feeling losing so much weight. I think I have already written too much, but please let me know what you think. 

 

DG

[Ariel]

@savinggrace

Not sure when your doctor's appointment is. 

Thinking of you and wishing it goes well <3

A.

[savinggrace]

Thanks, Ariel.  The appointment actually went quite well, but DataGuy gave me some very poignant things to think about.  I am not sure my frail mind/body are up to the procedures he is recommending.  He listened well though and only made one snarky remark.  "You read too much."  I kinda wish I had directly said to him, "I have to read and try to figure things out myself because no one else will take the time!"  Instead, I meekly shook my head and said quietly, "I am trying to be a well-informed advocate for my medical care."  The doctor then acquiesced...a little.

 

Hope you are feeling a bit better.

Grace

[Ariel]

@savinggrace

Glad to hear it went well, all things considered. Good on you for all the research you did and for being so well prepared, and that DataGuy was able to support you in your process. 

 

6 hours ago, savinggrace said:

He listened well though and only made one snarky remark.  "You read too much."  I kinda wish I had directly said to him, "I have to read and try to figure things out myself because no one else will take the time!"  Instead, I meekly shook my head and said quietly, "I am trying to be a well-informed advocate for my medical care."  The doctor then acquiesced...a little.

 

For what it's worth, this doesn't sound meek to me, although I know what you mean about sometimes wanting to let loose and air our frustration. From the doctor's remark it sounds like maybe he was on the defensive. What's beautiful is that your constructive, honest, non-violent communication seems to actually have deescalated the situation (potential defensive-defensive gridlock), and successfully disarmed (reassured) the doctor towards being able to hear you. Did you feel heard? 

 

Well done, brave Grace! <3

[savinggrace]

Hi Ariel,

 

This is a very late response to your last question.

 

Yes, I felt like I got through to this doctor, FINALLY, and that we had come to an amicable agreement about "next steps" for me that was palatable for me, and the only way forward for him.  In other words, I thought I made progress with him.

 

I made a big mistake, though.  I went on the patient portal to review lab results and clicked on "clinical summaries."  There were his notes from the appointment we had just had, in which, I though he had begun to respect why I make the choices I do, and why I have to work so hard at finding the least invasive treatment.

 

His "remarks" did not even sound like the conversation we had.  Any other doctor in the group (and it is a large one) would read his remarks and classify me (even if they hadn't met me) as a difficult, non-compliant patient.  In other words, my appointment was really a back-and-forth of both of us being polite, but he did not embrace ANYTHING of what I said.  The notes he wrote about me are passive-aggressively offensive.  Oh, how I wish I could leave him.  One of his remarks was about how I refused one of those weight-gain supplement drinks.  He said, "she thinks she can't drink it because it is milk-based but there is no lastose."  Well, there is casein in it and I am highly allergic to casein.  I am pretty sure he doesn't know what casein is.

 

I had an MRI (without dye, on my insistence) and it didn't show any pathology of my abdominal organs, including my pancreas.  I got this info on my own...through the portal...he didn't bother to call.  Meanwhile my weight has dropped another 2 pounds to 86#.  I have no idea in which direction to go as this doctor thinks I should just believe that the drug, domeperidone, "doesn't cross the blood-brain barrier".  Two psychiatrists have already told me it would be a dangerous drug to take with my current regimen.   He also doesn't believe that I get POTS syndrome for months after anti-biotics now.  His "next step" is a colonoscopy and endoscopy, both of which are invasive and involve anaesthesia, and possibly other drugs (none if I can help it).

 

In his opinion, I should "just go off my drugs" and if I can't I am an addict or won't, and he can't help me.  I am losing weight on the same diet I have been on for 8 years, admittedly trying to add new foods, here and there, whenever I am not in pain.

 

I could go to a different doctor but I do not want to repeat the numerous tests I have had and GI specialists take 6 months to a year to get into.  They will want to go forward the same way he does anyway, and I may have to give into something because I am headed for a feeding tube if I don't.  (which, btw, is not a choice I will accept)  I just wish he didn't marginalize me and mock me for being prepared and doing the research that he fails to do.

 

Thanks for your encouragement.

Grace

[Ariel]

@savinggrace

 

Oh, Grace. How disappointing. I'm sorry you've had this experience. 

 

I can relate. I have had a similar experience of checking journal notes and being appalled at what I found there. Like being punched in the gut with an alternate reality to the conversation I'd lived through with the practitioner in person. It's a disorienting, disgusting, destabilizing feeling. 

 

I'd like to take a moment to celebrate that your MRI "didn't show any pathology of my abdominal organs, including my pancreas". This is good news! Isn't it? How do you feel about these results?

 

As for the doctor, I hear you that the incongruence is dizzying and disturbing. I am in no way negating or diminishing that.

At the same time, maybe consider the possibility -- if only for your own peace of mind -- that the doctor has to write notes in this way to cover his a**. It is not impossible that your contact with him during your appointment was real and true, that he did hear you. Patient journals to a doctor serve as a legal document and there are liability issues involved; I can only imagine that doctors are instructed to CYA (cover your a**) whenever possible. Thought experiment of putting oneself in his shoes, maybe he felt afraid for legal reasons to accurately transcribe what the two of you had talked about because it was not conventional. I don't know. Is there a world in which you speak with him about this disconnect between the spoken and written? 

 

Then again, maybe he's just another a**hole and it's not worth it to waste any more breath on that line of communication. Sigh. 

 

I know that it's very unsatisfying and imperfect and ideally everything would match up and align. I know it totally stinks to have to do so much work on a meta level around your health care, from researching meticulously to communicating to checking journals afterwards to following up, etc. etc. It's exhausting and very unfair. I'm so sorry it's like this. I wish I could find you a good doctor who ticks all the boxes, or an excellent patient advocate (someone other than yourself), or better yet, I wish I had a magic wand I could wave to make everything all better! 

 

I'm rooting for you, dear Grace. I don't know what you're going through and hold space for the complexity and fullness of your experience. 

I hope you don't mind the pragmatism (or strategic optimism?) of my question above. I trust you are sufficiently seasoned a traveler on this path to know the necessity of pragmatism from time to time, as well as the value of staying true to oneself against all odds or in the face of others' notions of "common sense"; sometimes there is a middle ground between the two, sometimes we must take the leap and choose one over the other. Nobody can know this for us. 

 

I trust you.

I support you on your healing journey as you continue to move forward taking care of yourself and seeking help.

I'm sorry it's so d*amn hard. 

 

As I was writing to you, the serenity prayer came to mind, so I include it below. Feel free to disregard. 

 

God grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.

 

Love to you, Grace. 

A.

 

[savinggrace]

Oh, Ariel.  You are so right.  This doc is covering his ###.  He neglects to mention the red flags in my lab tests that I keep bringing up and he keeps ignoring.  (for 20 months now)  He is not documenting those issues.  My wonderful PCP calls his behavior "medical gaslighting."  He doesn't know how, or is too lazy, to best help me, so he is making it be about me and my reluctance to jump on the first bandwagon that goes by.

 

It's good my MRI was good,  but bad, because the right way to treat pancreatic insufficiency is through powerful digestive enzymes and they de-stabilize me just by looking at the bottle.  Not quite sure how I am going to proceed.  Too many "conditions" to manage at this point.

 

thanks for your support.  I HOPE that YOU are doing better than you were a couple weeks ago, but then, it is hard to tell, because as sick as you get, you are a wonderful support for all those who are lucky enough to know you.

 

Have a good day.

Grace

[Ariel]

Sending you a hug @savinggrace 

I believe in you <3

[savinggrace]

5 hours ago, Ariel said:

Sending you a hug @savinggrace 

I believe in you ❤️

💕💕

[DataGuy]

How are you doing @savinggrace? Don't worry about this GI doc. There is a pretty incredible number of docs who are absolute dopes. The only GI I ever saw was also a clown. He came in over an hour late and gave me zero explanation as to why. The crazy thing is my appointment was 9am, so it was one of the first appointments of the day!

 

@Arielis right, doctors are instructed to CYA by their lawyers. In fact they are instructed to deny everything (here in CA, anyway). I think it is probably the same in the US. You can see from this survey by ProPublica (one of the only news orgs who reports critically on the medical profession) that the vast majority of doctors simply refused to acknowledge patient harm. It is a dirty secret of the medical profession that they refuse to honestly treat patients who suffer iatrogenic harm and thus put their health in further jeopardy by failing to acknowledge the likely cause of their condition. Some doctors will be more brave and acknowledge or partially acknowledge harm. IMO doctors who do not do this are not worth your time. They are cowards and probably not terribly competent, hence their hesitancy to get involved in a situation where it might be tested beyond just the usual 'following treatment guidelines' scenario of everyday practice. 

 

I hope you are doing better. I am worried about your weight loss, but I think the options for treating it are limited. I still think holding is probably the best option. I wish I had a better solution. Have you tried any changes to diet or routine with any success (or failure)?

[savinggrace]

Hi DataGuy,

 

No, I don't know what to do.  I have tried to cut out any excess fat from my diet (by tweaking the ingredients to a couple things I make myself)  Not too sure it has made a difference because I didn't cut out that much fat.

 

The bottom line is, I need these really powerful enzymes and I can't take them.  I am not willing to sacrifice my mental health for my physical health.  I am struggling to just survive as it is.  The enzymes are not a magic bullet anyway; many people have trouble tolerating the side effects and I can't imagine layering any more pain/dysfunction on top of what I am and have been coping with.

 

I was going to make another trileptal cut but I decided to hold for a while as per your suggestion...it feels right...

 

I DO still take my B12 shots as I am trying to figure out if my extreme deficiency was contributing to my air hunger.  The jury is still out on that as I track my symptoms.

 

It occurred to me today that I am on the same dose of valium and remeron (2/3 less trileptal) that I was on when I weighed 110-115#.  I wonder what on earth that has done to how I metabolize these drugs.  At 86# I have no body fat for the valium to "hide out" in...I wonder what happens?

 

Kinda posing that as a general question, in case anyone has any thoughts...

 

Thanks for checking in.  I appreciate your time greatly.

Grace