Tomi found her way!

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Re: Tomi found her way!

Post by tomi1000 on Tue May 15, 2018 9:07 pm

I see the NP Thursday afternoon. As long as I have had the gut trouble and know my symptoms so well, I'm fairly confident she will agree that is has returned. Even if she doesn't agree, I know my body and I'm going to do the treatment I've ordered. It won't hurt anything if by a slim chance this isn't SIBO resurrected. It's all herbal and probiotics. Nothing that can do harm or cause more issues. If there is no bad bacteria in my small intestines then it will have nothing to work on. There is a questionnaire on the Amy Myers website - I answered all the questions and the results came out to Very Likely to be SIBO.

Yes, I am happy that I didn't gain. I really don't think I ate more while not tracking. I just naturally don't eat much, I never have. I think I learned early on as a child that food made my stomach hurt, so I just learned to eat very little.

I don't feel like I'm healing. I should be healing --- as my diet is pretty darn healthy, and I'm doing all the right things according to the NPs instructions. I'm taking all my vitamins and minerals and digestive aids and avoiding known troublesome foods. I'm sleeping better. But I feel like I'm still spinning my wheels. I've been on this crusade of healing since Nov. 2011. For honesty's sake I have not gone a long period eating 100% clean. I am 90-95% all the time though.

I know it is going to take a monumental effort on my part to get past this monster. I'm thinking I need to be no less than 100% for an extended period - like indefinitely - with diet, sleep, rest, movement and emotions. It would be so much easier if I could stop eating. I wouldn't mind never eating again if it meant no more gut pain and diarrhea. Smile Smile Smile Someone needs to invent a pill that people like me can take to give us the nutrients and calories that we need so we can just not eat.

As always - I will never give up. The fight continues - maybe my efforts have not been enough and I need to step it up.
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Re: Tomi found her way!

Post by marcadav on Tue May 15, 2018 10:24 pm

Tomi, this is a marathon, not a sprint. Please be gentle with yourself and continue to focus on what you can control-- your daily choices.

Life is, also, not a success only journey. Because of that, I believe we need to take comfort in, and embrace, the small successes we afford ourselves every day.

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Re: Tomi found her way!

Post by Lovebird on Wed May 16, 2018 12:57 am

marcadav wrote:Tomi, this is a marathon, not a sprint. Please be gentle with yourself and continue to focus on what you can control-- your daily choices.  

Life is, also, not a success only journey. Because of that, I believe we need to take comfort in, and embrace, the small successes we afford ourselves every day.

+1!

Great news on the counselor being such a good match.

Perfection is overrated. Cool
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Re: Tomi found her way!

Post by tomi1000 on Wed May 16, 2018 2:47 am

Thank you, ladies, for the kind and gentle words.

"Perfection is overrated" Smile I love it!

I want a magic pill, DAMN IT! I have never fallen into the "why me" pit --- but tonight I am seriously teetering on the edge. I want to scream, "IT'S NOT FAIR!". But, the realist in me is saying - "OH PSHAW! There is no FAIR in this world. Why not you? and Why not something even worse? Why not cancer? Why not Parkinson's or MS or Early Onset Dementia?" I have friends who are battling all those things and more. Me? I'm just a slave to the toilet and barely have the energy to keep the house clean - but I still have my faculties about me! I can still move about and I'm not facing a life threatening illness. It can always be worse.

I might be practically housebound by the diarrhea and the fatigue --- but I'm still living. Smile There is something to say about that. And I've been blessed with a beautiful place to live and a husband who loves me unconditionally. I have loving friends and family who support and encourage me when I'm down. And even though we've never met (Marcadav is an exception) I consider you all friends.

Marcadav --- can you tell me how freakin' long this marathon is? Smile Cuz it feels like I've just about ran across the entire country! Smile As for the journey --- this one is growing tiresome, and I'm weary of it. I'd like to get off now and start something that is more pleasant! Smile

Perhaps God is growing me. Cultivating a spirit of compassion for suffering maybe. I need to embrace the lesson.
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Re: Tomi found her way!

Post by tomi1000 on Wed May 16, 2018 2:54 am

Another thought that I need to discuss with the counselor: I feel like I am letting the people in my world down. My illness places limitations on me - and in turn stops me from being all that I want to be in the lives of those I care about. This causes a great deal of stress. It fuels my intense desire to HEAL and stop being unable to meet the obligations of life.

This is really huge! and although I've played with the thoughts in my head I have never really owned and expressed them.

My illness isn't just crippling me --- its limiting me and the role I want to be playing in the lives of others.
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Re: Tomi found her way!

Post by tomi1000 on Wed May 16, 2018 4:58 pm

Wow, rough night. I went to bed at midnight feeling really bloated and was uncomfortable all night. I woke up a lot. So I just allowed myself to stay in bed as long as my body needed to rest. I got up at noon. I made a nice tall glass of juice - 3 celery stalks, 3 carrots, a cucumber, an apple and some pureed beets. Yummy. Its very refreshing and I much prefer starting the day with that than solid food.

I need to catch up on boat shop bills today.

I have my list of topics ready for the NP appointment tomorrow.

I watched the video on Lovebirds last post -- the one with Marisa Peer. I really like her.
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Re: Tomi found her way!

Post by Greensprout on Wed May 16, 2018 7:10 pm

tomi1000 wrote:Another thought that I need to discuss with the counselor:  I feel like I am letting the people in my world down.  My illness places limitations on me - and in turn stops me from being all that I want to be in the lives of those I care about.  This causes a great deal of stress.  It fuels my intense desire to HEAL and stop being unable to meet the obligations of life.  

This is really huge!  and although I've played with the thoughts in my head I have never really owned and expressed them.  

My illness isn't just crippling me --- its limiting me and the role I want to be playing in the lives of others.

I am very familiar with this feeling, of letting people down, as part of my depression. Any of my friends/colleagues I’ve mentioned this too say HELL to that, you’ve given so much and now need to take the time to focus on my own health and not worry about others or the organization. I think this is very similar to what you’re feeling. Don’t have the answers, but keep focusing on your own healing.
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Re: Tomi found her way!

Post by marcadav on Wed May 16, 2018 8:30 pm

tomi1000 wrote:Another thought that I need to discuss with the counselor:  I feel like I am letting the people in my world down.  My illness places limitations on me - and in turn stops me from being all that I want to be in the lives of those I care about.  This causes a great deal of stress.  It fuels my intense desire to HEAL and stop being unable to meet the obligations of life.  

This is really huge!  and although I've played with the thoughts in my head I have never really owned and expressed them.  

My illness isn't just crippling me --- its limiting me and the role I want to be playing in the lives of others.

First, I will admit I detest any form of the word "cripple". I find it self limiting.

I think getting satisfaction/feeling needed from/by helping others is a typical way of being for adult children of alcoholics. The problem with this, as I see it, is we tend to put ourselves last and often do for others what they can and, possibly, should do for themselves.. We also have a hard time grasping the idea of-- the best way to help others is to be the best person we can be for ourselves.

Tomi, you asked early how long the marathon will last. My answer is--until. I also think, that when the process seems to be taking too long, reflection is helpful and, for me, usually necessary.

I would ask myself these things:
1. Are my food choices consistently on point. If not, why? Where/how can they be better?
2. Am I expecting things to change overnight or resolve after I've been stellar for x amount of time?
3. Is my focus on the process and my choices? Or are my choices dictated by whether or not I'm getting the results I think I should be seeing?
4. Am I letting setbacks derail the choices I know I need to consistently make to insure long term success?
5. What foods am I eating that, most likely, need to be exiled for a long time so I can have long term success?
6. Am I will to give up xyz, maybe permanently, if it means I'll be the healthy person I want to be?

I hope this helps.

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Re: Tomi found her way!

Post by Narrowminded on Wed May 16, 2018 8:59 pm

Love these questions

I might add that Terry Wahls has you keep a very specific diary. She has questions that you need to complete on a regular basis so you can see how you are healing. Sometimes its the little things we miss that can really be an encouragement when we actually notice them getting better.

If you’ve never read her book Wahl’s Protocol, I’d check it out. Basically the same as other AIP with a few different tweaks as they all do, but there is so much more in there than just what to eat or avoid

I think you’re trying hard and I’m sure it’s very frustrating and thinking that it could take a year or more has to be very hard. Better to focus on just this meal, just this day and let the time take care of itself.

Hugs
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Re: Tomi found her way!

Post by tomi1000 on Thu May 17, 2018 12:07 am

Greensprout wrote:
tomi1000 wrote:Another thought that I need to discuss with the counselor:  I feel like I am letting the people in my world down.  My illness places limitations on me - and in turn stops me from being all that I want to be in the lives of those I care about.  This causes a great deal of stress.  It fuels my intense desire to HEAL and stop being unable to meet the obligations of life.  

This is really huge!  and although I've played with the thoughts in my head I have never really owned and expressed them.  

My illness isn't just crippling me --- its limiting me and the role I want to be playing in the lives of others.

I am very familiar with this feeling, of letting people down, as part of my depression.  Any of my friends/colleagues I’ve mentioned this too say HELL to that, you’ve given so much and now need to take the time to focus on my own health and not worry about others or the organization.  I think this is very similar to what you’re feeling.  Don’t have the answers, but keep focusing on your own healing.

I like what your friends says - and I totally agree. Until I feel like I need to be something to someone. I'm sorry that you understand, but its comforting to know that someone does. I hope you are focusing on yourself - everyone else can take care of themselves. (I'm saying this to myself also). Smile
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Re: Tomi found her way!

Post by tomi1000 on Thu May 17, 2018 12:19 am

marcadav wrote:Tomi, you asked early how long the marathon will last. My answer is--until.  I also think, that when the process seems to be taking too long, reflection is  helpful and, for me, usually necessary.

I would ask myself these things:
1. Are my food choices consistently on point. If not, why?  Where/how can they be better?
2. Am I expecting things to change overnight or resolve after I've been stellar for x amount of time?
3. Is my focus on the process and my choices? Or are my choices dictated by whether or not I'm getting the results I think I should be seeing?
4. Am I letting setbacks derail the choices I know I need to consistently make to insure long term success?
5. What foods am I eating that, most likely, need to be exiled for a long time so I can have long term success?
6. Am I will to give up xyz, maybe permanently, if it means I'll be the healthy person I want to be?

I hope this helps.

Are you in my head???? Smile Smile Smile Yes, I ask those questions too. But I usually avoid answering them cuz I don't like the answers. Embarassed

And yes - spot on about the child of alcoholics always taking care of others. I didn't have a life where I was picking up the pieces for my mom - she wasn't a fall down/pass out drunk and she kept the house and always had dinner on the stove. But I was always stressed out and feared for my own safety and security due to her drinking. Like when she would make the second run to the store for her second 6 pack of the day - I would either go with her, or I would sit at the top of the stairs and wait to her come home. Always hypervigilant.

Oh the things we carry with us from childhood.
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Re: Tomi found her way!

Post by tomi1000 on Thu May 17, 2018 12:23 am

Narrowminded wrote:Love these questions

I might add that Terry Wahls has you keep a very specific diary.  She has questions that you need to complete on a regular basis so you can see how you are healing.  Sometimes its the little things we miss that can really be an encouragement when we actually notice them getting better.

If you’ve never read her book Wahl’s Protocol, I’d check it out.  Basically the same as other AIP with a few different tweaks as they all do, but there is so much more in there than just what to eat or avoid

I think you’re trying hard and I’m sure it’s very frustrating and thinking that it could take a year or more has to be very hard.  Better to focus on just this meal, just this day and let the time take care of itself.

Hugs

yes, I need to stop wanting the process to move swiftly and steadily.  I know it doesn't work that way.  It's usually 3 steps forward 2 steps back  which leaves you feeling like no progress is being made a all.  But there is still a gain - hard as it is to see it.
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Re: Tomi found her way!

Post by tomi1000 on Thu May 17, 2018 3:57 pm

I might try to pick up that book by Terry Wahl. I am familiar with her story, and her healing process. She is amazing!

I decided to start keeping closer tabs on what is happening with my body. To see if there is any type of pattern or if something should stand out as a trigger or an obvious cause/effect. So -- more charts! What would I do without my Excel? I'm going to track bowel function (time, pain, bristol stool #, timing of meals/snacks, possible food triggers). May be overkill -- but it could prove to be helpful in understanding what is happening.

Okay - ramblings to follow as I am attempting to sort my thoughts.

Quite honestly -- I am beginning to think this is much less food related and more physiological in nature. I don't think its that my body is sensitive to or unable to process certain types of foods (or frankenfoods), but that it is simply not functioning properly to digest any types of foods. I really am doubting that a "clean diet" (even 100% for a year) is going to heal my broken digestive system. It MAY eventually get me to a life of less pain and somewhat normalcy, but after 6.5 years of trying, my confidence is fading. AND -- if a clean diet is simply masking the real issue, then it will continue to rear its ugly head and cause trouble. Not saying I'm giving up on the "eat to heal" philosophy, I'm just throwing out some thoughts that are rattling around in my brain.

My reasoning for these rattling thoughts is this: it is logical to think that an improvement in diet would show an improvement in bowel function and a decrease in pain. Logically.......... that makes total sense. But, that is not my reality. My reality is 95% improvement in diet has resulted in no improvement in bowel function or pain levels. The SIBO was fixed with meds --- but I continued to have severe IBS. If IBS is completely food related - as all the doctors and research indicates - then why am I not seeing any improvement? Not that I don't have a few good days here and there - but that happened even when the SIBO was raging. You'd think with such a healthy diet I should be seeing lots more good days than bad - but thats not the case. My good days, where I have only 1 or 2 BMs and little to no pain come maybe twice a month. So, honestly, I don't see any connection between eating clean and better gut health. I do see that my gut is LESS tolerant of certain things, but it still seems to be intolerant to some degree of EVERYTHING. And eliminating those things that cause the most harm is not resulting in very much improvement. At least not enough to satisfy me.

I made a decision this morning. I'm going to do the 2 months of Myer's SIBO Breakthrough Kit treatment, and start the Valtrex (assuming NP is going to give me a script today) and if I do not see a marked improvement in my gut function at the end of 2 months, then I'm going try CBD oil. I know there is no scientific backing for it's use, although studies are beginning to emerge. I'm sure if there is money to made Big Pharma will get its hands in the pot (see what I did there?) Smile But there is certainly mountains of anecdotal documentation of it's uses and benefits. Hubby's nephew has Crohn's and since using CBD oil his symptoms are completely under control. The Crohn's doesn't effect his life at all. He's working full-time, he has a very active life with his wife and 2 kids and extended family. He doesn't have to worry about what to eat or where the bathroom is - he just lives his life. I won't abandon my clean eating habits - I see other benefits in eating clean.

I want my life back! I want to be able to go to the grocery store without fearing a gut ache and the need to find a bathroom. I want to be able to go on a road trip where I have no idea where the next bathroom stop will be. I want to be able to go to dinner in a restaurant and enjoy the food without getting a gut ache and having to run to the bathroom or quickly go home. I want to be free of this prison of pain and embarrassment. My husband is also deeply effected my this - its not fair to him.

Okay............. emotional breakdown there. Sorry.
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Re: Tomi found her way!

Post by marcadav on Thu May 17, 2018 7:47 pm

tomi1000 wrote:

Are you in my head????  Smile Smile Smile  Yes, I ask those questions too.  But I usually avoid answering them cuz I don't like the answers.  Embarassed

And yes - spot on about the child of alcoholics always taking care of others.  I didn't have a life where I was picking up the pieces for my mom - she wasn't a fall down/pass out drunk and she kept the house and always had dinner on the stove.  But I was always stressed out and feared for my own safety and security due to her drinking.  Like when she would make the second run to the store for her second 6 pack of the day - I would either go with her, or I would sit at the top of the stairs and wait to her come home.  Always hypervigilant.  

Oh the things we carry with us from childhood.

No, I'm not in your head. Being in my own head is a full time job, with plenty of overtime Razz

Has not answering personal questions, like the ones I posted, helped you get to where you want to go? What if answering them and internalizing the specifics of what you need to do helped you get where you want to be?

I question myself a lot. I do not have to like the answers to the questions I ask myself. However, I owe it to myself to be honest about whether I'm helping or hindering myself. I tend to be someone who doesn't pull punches, especially with myself.

Have you ever considered that your hypervigilance, ingrained in childhood, mays play a role in your issues?

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Re: Tomi found her way!

Post by tomi1000 on Thu May 17, 2018 9:15 pm

Marcadav -- you make me chuckle Smile

I have thought deeply about my hypervigilance and how it effects everything in my life. And this is another reason I have decided to go with the counseling. NP was very please that I am exploring that part of the puzzle.

My appointment with NP was very productive today.

1. She is thinking the gut/brain connection is playing a huge role in my issues since diet isn't having much of an impact. And is please that I am seeing a counselor.

2. She gave me an Rx for Valtrex. Don't start for one week to see if being off Crestor makes any difference in energy.

3. She wants me to continue on Fluconazole for another 3 months

4. She wants me to stop taking the 40 mg Crestor for 3 months to see if the high dose is impacting my energy. We will test cholesterol in 6 weeks (as well as a host of other things) and assess need or not for meds.

5. She wants me to try again to do daily yoga and maybe start walking. My weight concerns her.

6. The SIBO confuses her since motility plays a huge role in the migration of the bacteria - and my motility is in hyperdrive - so I shouldn't be having SIBO. She doesn't want to treat yet, but will agree if symptoms continue.

7. We will stay in touch over the summer and regroup in the fall to assess.
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Re: Tomi found her way!

Post by marcadav on Thu May 17, 2018 9:57 pm

I'm glad you got a chuckle out of my post. I'm also beyond happy you are getting off the cholesterol med. It is something I would/will never take.

Now for the tough stuff--If you really want to get healthy, I believe you have to be stellar in in your food choices. For me, that means no gluten, no processed foods, no restaurant foods (god knows what's in it or how it's cooked), no sugar, no deviations, and getting adequate calories. This is for, at least, the 3 months you're off Crestor.

The other issue, IMO, is this-- You say you are eating according to hunger. The problem is,as I see it, you've taught your body to exist on very low calories. That means your hunger cues are most likely compromised. I think you should eat on a schedule with at least 3 meals a day, hungry or not.

I also agree with the exercise. For me, that means possibly starting at 5 min/day and increasing as tolerable. It's, again in my mind, creating a routine much like brushing your teeth.

Feel free to tell me to GTH.


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Re: Tomi found her way!

Post by The Walrus on Fri May 18, 2018 3:42 am

I wouldn’t be surprised if getting off the Crestor doesn’t help a lot of your symptoms. I hope so!
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 4:06 am

thanks, Marcadav - all food for thought Smile


Last edited by tomi1000 on Fri May 18, 2018 1:30 pm; edited 1 time in total
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Re: Tomi found her way!

Post by Pedidoc on Fri May 18, 2018 7:00 am

I know I've been MIA, but where are you affirmations?
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 1:32 pm

I haven't done them in a few days. ooops. I just forgot.
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Re: Tomi found her way!

Post by Pedidoc on Fri May 18, 2018 2:26 pm

tomi1000 wrote:I haven't done them in a few days.  ooops.  I just forgot.

Back to day 1 in count! Laughing
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 6:06 pm

The Walrus wrote:I wouldn’t be surprised if getting off the Crestor doesn’t help a lot of your symptoms.  I hope so!

Yes - NP was really upset when I told her that former doctor put me straight on the highest dose instead of titrating up. Even though my CRP was at 20 at my 6 week blood draw. That alone could have a lot to do with my total crash in October when I had to quit my job. So, it will be interesting to see if there are any changes in my energy in the next week.
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 6:08 pm

Affirmations:

1. I am beautiful inside
2. I am attractive outside
3. I am strong
4. I am determined
5. I will heal
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 6:09 pm

Pedidoc wrote:
tomi1000 wrote:I haven't done them in a few days.  ooops.  I just forgot.

Back to day 1 in count! Laughing

oh dear............. what was my assignment? How many days?
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Re: Tomi found her way!

Post by tomi1000 on Fri May 18, 2018 6:30 pm

I wrote a long post last night and then decided this morning to delete it. So if you read it - please disregard my late night, already took my sleep meds blabbering.

I'm feeling really good about the plans we have in place now. I realized this morning that I have a pattern of kinda freaking out right before I have a health care appointment. I think it is because I have been told all my life from doctors that there is nothing they can do for me and I just have to learn to live with it -- so I think I have this anxiety and expectation that I am going to hear it now, and it freaks me out a bit.

I must have multiple, maybe dozens, of tapes playing in my head that I need to rip out and burn!

Counseling appt got rescheduled to next Friday. I took too much Skullcap last night and I'm just not mentally clear enough to have a session today. I slept until 9:30, then fell asleep twice more and didn't get out of bed until 2:00 pm. I feel like I have a hang over. I need to be careful in the Skullcap - its potent stuff. NP warned me of this.
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