Holy moly! I don't even recognize this woman! Who is that??
Some Backstory
For some reason, moms feel it is essential for professional family photos to be done at some point in our lifetime. Hmmm, let's talk about timing shall we?? The ONE photo shoot with no repeats and no annual. UGH
From year to year, I would ignore knowing this frame exists.
I asked myself...
..are my mom's friend's judging me for being "chubby?" Why did I feel so much embarrassment for being so big? For having a MOON FACE.
Truthfully, I felt that NO ONE understands what it is like to feel the way you feel about something completely out of your control.
Corticosteroids take your life and more, just to achieve remission ...maybe, we can't be sure if there is remission in our future... no guarantee.
FYI TMI if you're not comfortable with potty talk, skip over the next paragraph:
Some of my most miserable moments would be spent three hours at a time (which felt like an eternity, 2 or 3 in the morning for a 7am rise was typical) sitting on the toilet... waiting tortuously for something to come out when nothing is left but your body attempting to eliminate itself, from yourself...WORST, PAIN, EVER.
It is under attack on itself all while you are sleep deprived, crying ugly tears because you want the simplest thing which is to lay in bed!
The isolation from hanging out with friends...
" I can't tonight guys, sorry"
The disappointment you were over and over again for not showing up to a friend's event.
Or maybe you were looked at as a slacker at work
...or a health hazard.
No one believed you when you said what your symptoms were (hence why us spoonies call it the "invisible illness" looking normal on the outside but destructive nightmare on the inside
...you would see true colors of friends...
which were passive aggressive with you because the activity they oh so wanted you to desperately join them in, didn't happen because they needed you by their side when you state clearly:
"please go without me and have fun. I simply can't do a damn thing about this."
Pessimistic? Hmmm, don't get me wrong, being med free CURRENTLY is amazing!! But there are fears that stem from experiences... that's why I share these misery moments of my past with you.
Some of my fears that emerge
from time to time
 |
| it gets me as frightened as when I am lost in an IKEA! |
1. "a flare will creep in ANY moment now."
It's PTSD for sure, despite the fact that I have accepted I will have UC for life and there is no cure...that little voice tells you " this may not be the end of it" can go both ways.
Either towards fear or hope...
2. "Shit, I still have peripheral neuropathy. Better go get my B12 shots so I don't fall face first to the floor from not feeling my feet on the ground"
...what do we call that in the rehab world when we cannot tell where our body is in space?:
impaired proprioception
it sucks and it's perceived invisible like ulcerative colitis.
3. This is A LOT of responsibility to remain in remission. What if I slip up?"
I fear I will blame myself for not staying consistent.
"...okay I'll have crappy food this one time because its just one time and I'm human so why not"
... my problem is not the one time I cheat or even the three times in one day
... it's when it becomes a bad habit again and "oops! I did it again"
A new 21 days strong of bad habit that is slowly poisoning me and putting my risk for flare back up in the high chance of "I will."
It's just the opposite direction of what we need for creating a good habit! So we might as well put all our effort into creating the good ones instead of "thinking about" all the bad ones we made, with it's regrets and all
it's important to give ourselves the pat on the back we deserve for making effort daily.
it's important to give ourselves the pat on the back we deserve for making effort daily.
The story of MY journey has been a long one and enough for an E-book (coming soon) but this one new chapter I reflect on today was worth the wait.
Are you willing to stick around a bit longer to read about it? Yes? Good.
...if you have an open mind and want change, stick around...or come back to read the rest when you don't find yourself distracted at work lunch hour attempting to read this or before a morning coffee...no no.
Some tough love for my fellow
UC warriors
I ABSOLUTELY DO NOT WANT TO WASTE YOUR TIME READING THE REST OF THIS IF THE FOLLOWING APPLIES TO YOU:
-You are looking for a cure... I am not here to preach one.
- Putting me down in your headspace of thought or via comments about your perception of what you will read here. Bye!
... Consider the following to be about the experience and journey that I had and am having...I chose to take the time to share here ONLY for those desiring to know about it. This is my platform, I have that right to share what's mine on my blog, correct?
-Forcing you do to something you do not want for yourself. I am not the hand that has you place something into your body or life that you do not fully support.
-A easy out. The "end all-be all" or "solution".
Okay now that's all out of the way...
Some things I am definitely not sure about:
1. I have NO CLUE when OR if this freedom of being free of flares will stick...
2. That while no meds are on board, I think
will it be 'too good to be true'?
OR
am I carrying around false hope?
OR
(Insert some other self limiting excuse
I have put in my path in the past)?
Do not get me wrong, I understand those who have opted out for a colon removal because the torture is unbearable and it consumes your WHOLE LIFE.
The day I told myself I want to stop contributing to chronically damaging my insides (both mental and physical), was the day I noticed improvement.
I did not let my disease take the better of me by just surrendering to stressors in my life or because of the way things are when it comes to this disease.
I FOUGHT TOOTH AND NAIL to get here with A LOT of falls. One thing I can say is after picking myself back up off the floor over and over again, I did many trials:
-15 (yes 15) different nutritional supplements, including very reputable ones like HealthForce products which for the average system work wonders( sadly not easily absorbed in my system...it was missing something). Others were poison like Ensure and Boost (lets save the why that is for another blog entry).
-multiple upon multiple ways to prep and eat my food
-spice or no spice ...which spice?... how often?... which kind and do I even know anymore? Exhausting.
One thing is for sure, you really get a sense of "foolproof" triggers that increase your chances of a flare very promptly. In contrast, the positive in other items when used on a long term basis actually reset your microbiome for the good not the worse.
 |
| 4 month anniversary med free |
ONE THING, IF ANYTHING
you get from my 6 month anniversary blog entry is this...
HAVE HOPE.
TAKE A LEAP OF FAITH.
SHIFT YOUR MINDSET.
ACCEPT that you WILL have to try again until you have
a minute
a week
a month
or even 6 months
a week
a month
or even 6 months
of being without symptoms, not in pain, and maybe even avoiding further destruction of the body.
meditate on it
and absorb it's goodness while its there
of any remission moment you get.
 |
| 2002: steroids to 2003: Mercaptopurine, switch of asacol (16 pills) to asacol HD (8 pills) to 2 Lialda pills and xanax and muscle relaxers to now, no pills and pure nutrition |
Here's some advice if you want to achieve the change
1. Do your RESEARCH!
Don't say what something is until you have done the following:
examined all sides
asked questions for yourself
and stop taking others words for it!
Go with your gut (no pun) but GET THE FACTS STRAIGHT!
Research is to determine opportunity for the thing being researched on having a probability to work in your favor but also
...asking "is this the right match for me??"
That is based on your hands-on experiences. Those experiences are a must for the knowledge yet to have been discovered.
That is what I did with EVERY SINGLE intervention I have taken with any product, service, practice or intervention I have implemented in a 13 year span.
It's also how I ended up choosing my nutritional shake. My favorite is vegan chocolate
My goodness.... let me tell you...my friend offered me samples for over a two year span and I tried them but I didn't commit more than a day serving... until I decided 'enough is enough, let me research this' (the graduate student in me, lol) and low and behold, I found something good!
Impressed actually...
and I wondered why I didn't start this earlier once I felt the results. Here's why:
your trusting friends can tell you ALL THEY WANT but
YOU WILL NOT believe them until you try it for yourself,
ya know??
ya know??
NUMBER 2. YOU HAVE TO DO THE WORK!
You have to put in the effort!!
Consistently, day after day, over and over until you are at your wits end and are tempted to say " I surrender."
Instead this is to be followed by " I never will give up, keep going with this!" My motto is to try anything at least a minimum of 21 days straight...yes, in a row (enough to break/create habits).
That applies to nutrition programs, supplements, exercise, exam studying, projects for your passion, whatever it may be. You HAVE TO STAY CONSISTENT IN DOING THE WORK TO GET THE RESULTS YOU SEEK.
In fact, you have to want it bad enough that you are willing to try.
3.TRIAL AND ERROR with a RINCE-REPEAT CYCLE.
Do your own personal research project with yourself.
How else are you to know unless you try something over a longer course of time?
How are you to experiment and be able to share what works or doesn't work with those that may benefit from your failures?
Was it one time you tried or several?
Alone or coupled with other things?
Those readers out there who suffer from Ulcerative Colitis, that hear my strategies and know they are the way to go but some, don't make you convinced of that when you don't "deep down, in-your-heart" believe that... I don't know what to say other than, okay, bye!
I am here to tell you what worked for me is a trial and error, with a rinse- repeat cycle. I challenge others to do the same with their life and choices.
...Let's take a food item like bell pepper for example.
I could not eat it raw for the life of me without major pains in my gut when I was in remission years ago.
So I decided to do some trial and error instead of giving up on bell pepper.
I pureed it for sauce in spaghetti squash or for a red bell pepper soup, I chopped it into bits and cooked them down so soft.
You have to do ongoing research and acting upon it to see what will change. To see if it will do so.
I can have bell pepper in those forms now. Cabbage however, no matter the way I try, forget it, I revisited that 10 fold and it is a no go. It's officially on my "don't go there" list. Same with some processed items like white/wheat breads (omg i loved white bread...I was sad to find out the one thing I thought I could take in was one of the many things contributing to the horror in my body. It masks itself quite well thinking it's great!)
Another thing I recognized is our bodies change every 7 years...my cousin is now allergic to avocado...it came on random! She most certainly did not have that problem when she was little. My mom, same thing for having strawberries and discovering this in her 60s! The same goes for what now may work for me that didn't before.
TRIAL AND ERROR, RINSE & REPEAT.
Next...
4. HAVE REALISTIC EXPECTATIONS
OF YOUR OUTCOMES
Having a neutral mindset. When your direct focus is on the facts of your actions (or lack of) without judgement, you cannot be disappointed when your results don't come...The same for the opposite: when you do not do the work but still want results?? Is that realistic?
My closing thoughts...
Yes, I am MED FREE and it feels AMAZING!!
Who do I thank for that:
1. My dear friend to thank for sharing those special little packets with me because I would not be here today sharing my story without her.
2. Myself for having hope and taking a leap of faith for a possibility for more.
I always talked about the concept of mentoring others with IBD as being a blog dream of mine or side job but never had the stamina, energy or health to do so...until now.
I want you to know I am here for you in your journey, only if you truly desire to seek the change, create your path and decide to go another way for an opportunity at what you most desire for your goals and wishes for your life.
If you invest in yourself, I am right there with you to cheer you on.
Cheers!!! Happy 6 month anniversary to being med free to me!!
Best to you spoonies and IBD warriors! - Lex
Let's talk definitions
REMISSION: free of symptoms (could be for short or long periods of time)
TREATMENT: intervention to address symptoms where the disease still exists
CURE: to be rid of a disease
ENTERIC NERVOUS SYSTEM (ENS): the second brain, a portion of the peripheral and autonomic nervous systems that CONTROL the gastrointestinal tract... why our thoughts are so powerful over our gut and why stress triggers inflammation, especially over time
ULCERATIVE COLITIS: inflammation of the colon where the autoimmune response triggers the body to attack the colon over and over again
SPOONIE: those who live with chronic illness where measuring daily task capacity is to delegate the amount of spoons needed for each. At times ample amount of spoons are available to distribute for your energy for the day and other times, coming up short
Please consult your physician before beginning any food, supplement or meal replacement product, particularly if you have any unique or special needs or conditions, such as, food allergies, dietary restrictions with or without medical conditions, or if you are pregnant/ breast feeding. The content on this site is for informational purposes only, that of the experience of the writer, and is not intended to provide any medical advice, diagnosis, or cure/treatments. The information contained on this site is intended for educational purposes only and does not substitute for advice, diagnosis or cures or treatments by a licensed physician. It is not meant to cover all possible precautions, drug interactions, circumstances or adverse effects. You should seek prompt medical care for any health issues and consult your doctor(s) before using alternative medicine or implementing change to your regimen.
UC Coaching:
Please consult your physician along the process to determine any changes to your routine are to be safe and not conflicting with the safety of your body including adverse reaction with combination of interventions or otherwise. Coaching sessions are to share the writer's experience living with Ulcerative Colitis including education, experience and results in order to provide value to the recipient of the information and support them through their process with encouragement, however, the information does not intend to take place of medical intervention at which is recommended or prescribed by a physician. Results amongst interventions vary based on age, extent of medical conditions, genetics, cognition, environmental factors, client effort and safety in application of intervention or otherwise.
Food, supplement or meal replacement:
Please consult your physician before beginning any food, supplement or meal replacement product, particularly if you have any unique or special needs or conditions, such as, food allergies, dietary restrictions with or without medical conditions, or if you are pregnant/ breast feeding. The content on this site is for informational purposes only, that of the experience of the writer, and is not intended to provide any medical advice, diagnosis, or cure/treatments. The information contained on this site is intended for educational purposes only and does not substitute for advice, diagnosis or cures or treatments by a licensed physician. It is not meant to cover all possible precautions, drug interactions, circumstances or adverse effects. You should seek prompt medical care for any health issues and consult your doctor(s) before using alternative medicine or implementing change to your regimen.
UC Coaching:
Please consult your physician along the process to determine any changes to your routine are to be safe and not conflicting with the safety of your body including adverse reaction with combination of interventions or otherwise. Coaching sessions are to share the writer's experience living with Ulcerative Colitis including education, experience and results in order to provide value to the recipient of the information and support them through their process with encouragement, however, the information does not intend to take place of medical intervention at which is recommended or prescribed by a physician. Results amongst interventions vary based on age, extent of medical conditions, genetics, cognition, environmental factors, client effort and safety in application of intervention or otherwise.
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