AIP Elimination Week 1

Well, this is certainly the strictest diet I’ve ever been on, but thanks to my food angel…not yet the most painful one.  The week got off to a rocky start due to a stomach bug I caught the night before I was to begin.  Thankfully the worst was only one night and the next day I spent recovering, but still able to start the diet and keep the food down.

Pros of the Week:  

  • The food has been pretty tasty.
  • I have found a decrease (not yet eliminated) pain in my joints.
  • I’ve had lots of energy.
  • I’m always full.
  • I’ve lost a few pounds.
  • Husband has noticed my hands being smoother (roughness is a sign of my disease)…and I think I’m taking note of it too.
  • Was able to cook a couple meals for my family that I am allowed as well…so I’m learning.

Cons of the Week:

  • I feel like I’m constantly chasing calories, even when I’m not hungry
  • Because I’m chasing calories, I feel like my whole day is based around food, thinking of the food, logging the food, seeing that the food is still not enough calories, looking for more food, eating twice as much as I would normally eat and still not reaching my caloric goals.
  • I’ve never been one to snack or make a habit of overeating…so dealing with food fantasies of stuffing my face with every last thing I find in my house that isn’t allowed is a bit disturbing.
  • Because I haven’t been able to up the calories, I’ve opted out of exercise this week (although I plan to do it back to regular levels next week).

Remained the Same:

  • Joint issues in my left wrist don’t feel very different, it always has been my worst one.
  • Breathing issues feel the same (always on the lookout for that miracle breath!).
  • Still taking nightly epsom salt baths, but plan to take them aways around week 3 or 4 to see how I feel.  I don’t want to take too much away at once.
  • Body still heavy at the end and beginning on the day…muscle fatigue still an issue.

Three more weeks of elimination remain until it is time to start adding ingredients back in one-by-one.  Stay tuned for subsequent updates!

 

What People Don’t See When They Look at Me

Invisible-illness-under-the-surface.jpg

There is so much about all of us that isn’t seen from the outside.  Our internal struggles, our physical struggles, issues we may be encountering with family, friends, career, etc.  Although I know people didn’t have x-ray vision into my world prior to diagnosis, post-diagnosis it seems even more inevitable that most folks wouldn’t even come close to guessing what my day-to-day is like just by looking at me.

5 Things People Don’t See When They Look at Me

I Don’t Feel as Good as I Look

If you catch me on a decent day, where I’ve decided to put valuable time and energy into putting on makeup and getting a shower in, I can pull off healthy pretty well.  Many people mistake my efforts as a sign that I’m feeling as well as I am looking.  Although I appreciate the compliments, it is not safe to assume my outside matches my inside.

I Never Get a Day Off

Regardless of how good I seem, how good I look, how much I have or am accomplishing, I have never, ever, EVER had a single waking hour off from my disease.  From the first noticed symptom to now over two years there hasn’t been even a minor amount of time that I’ve been allowed to forget or not have to make allowances for my body’s shortcomings.  That alone is an exhausting reality.  It is a constant that demands my attention and deference…more than even any of my children ever have, and one that will not ever go away.

I Had Attainable Life Plans That Were Crushed

My symptoms came on rapidly and therefore a chronic condition didn’t enter my mind.  I thought that as soon as I got a correct diagnosis, then the appropriate treatment plan, probably some course of drugs would be administered to clear this all up and I could go about my life.  I was very naive in the beginning as to the long-term life goals that I never doubted would happen, would never be able to come to fruition.

Social Events Often Have Great Consequences

I’ve always been a social person and I love seeing friends and spending time with people.  I’m in awe when I actually make it out to one and will do all I can to show up with a smile on my face.  It makes me happy to get out and  I relish that time and I have gratitude in my heart that I can enjoy it.  I also may not function for two or more days afterwards.  My children may have to feed themselves.  The house will succumb to complete disarray.  I most likely didn’t schedule anything for the days after an event, but if I did, they are often cancelled.  These are the things I have come to expect and anticipate.

I’m Surprised at What I Can Do – And at What I Can’t Do

It’s amazing that I can go to the gym.  Having needed assistance in the past accomplishing simple things around the house and with my children, I’m ecstatic that I’m able to do most “normal” things others can do.  However, what may not be as obvious is that going to the grocery store feels more difficult than going to the gym.  That when I take a shower, I have to take a break between shampooing and conditioning because holding my arms up makes them feel like they are made of lead.  The pace you see me move around in,  is not my natural inclination and it is designed to keep me from being out of breath in a situation that doesn’t call for that.

 

Food: The Final Frontier

the-paleo-mom-paleo-aip-no-foods

It’s been awhile since my last post.  I’ve been doing a lot of thinking about what my next moves are – in life and for this blog.  And this is what I’ve worked out so far:

For some time now I’ve enjoyed a certain level of predictability in my life.  My symptoms, while always with me, are relatively stable.  My sleep has been typically good, without any further need for anything stronger than a nightly epsom salt bath.  My exercise level has been as good and varied as it has ever been.  Winters are harder on my symptoms, their increases still remain predictable.  I have learned to control my daily life in many major and minor ways in order to get the most out of what I’ve been given.  That is, in most areas except one glaring one…diet.

I haven’t been able to fully research the ways in which various food might negatively affect my life for 2 reasons 1) Most of the last 2+ years has been too variable to be able to pinpoint cause and effect relationships with food and 2) It is really really hard and the couple of times I tried an elimination diet, I failed miserably.

The Autoimmune Protocol Elimination Diet seems to be about the strictest one out there for this purpose.  It is like a paleo diet and then you take about 20 additional things off the menu.  I’m not a great cook when I have every ingredient available to me, so I’m especially terrible when it is restricted more than one can imagine without studying the list.  So when I realized that it might just be the perfect timing to try to really complete one and once and for all identify any food items that could help rid my body of pain, fatigue and who knows what else, I knew I had to at least see if I could find someone out there that could help me succeed for a reasonable price.

I made a plea post on my local mom’s Facebook group.  I explained why I’ve always failed and what I would need in terms of help from another.  Amazingly, a wonderful woman accepted the call.  She has researched my needs, shopped for my groceries, prepped for my meals and left a list of suggestions on my fridge.  She did all this for a price that I couldn’t refuse and basically eliminated all barriers to making this happen.  Shit!  I really had to do this!  Sometimes it is hard to come to grips when you run out of excuses.  The only thing between me and this research project, was me.

I am currently on day 3 of what will be at least 30 days of the complete elimination diet before I start reintroducing each eliminated item or category to determine if it makes a difference to my health.  I can say, with the help of a woman that has so graciously bestowed her time, energy and willingness to come to my side with support this has already been more successful than any of my solo efforts.  It still isn’t easy, but having help makes it possible.

About the blog.  I will continue to chronicle my personal updates here as I’ve done.  However, I’d like to see if I’m able to write and reach more people that are struggling with chronic illness.  Perhaps there is something I’ve learned and experienced that I can impart on another to make their life easier…or at the very least, less alone.  There will be some forthcoming posts that I will continue to share, but are directed towards a wider audience of sufferers.  Please feel free to share any of my posts with those that might benefit from their content.

2 Years After

laughter-and-tears

Well, it is that time of year again where dates are flying towards me and reminding me of the first days, weeks and months of this new life of mine.  It is a time of reflection and admittedly, sadness.  Although one is not able to conjure up the feeling of physical pain they once experienced, but it is quite easy for me to re-feel all the terrifing things I’ve felt in an almost uncontrollable rush.

It bothers me still how emotional I can get about my health.  But, despite all the improvements I’ve made over the last two years…every day is still a struggle.  And to know that one can improve by the leaps and bounds, beyond anyone’s expectations, and yet still have to struggle to do the most basic things in life…for the rest of my life…is daunting.  The fears that I had two years ago for myself and for my family have not diminished.  Although I don’t feel I’m in as imminent danger as I once did…I continue to feel that imminent danger could come to me at any time.  This is not an easy space to move around the world in.  However, for me to forget it would make it more likely to occur due to the carelessness that would follow.

I share all this only to shed light on the truth of my emotional juxtaposition.  I am both a positive person and a realist.  I am motivated and exhausted.  I am joyful and sad.  I am confident and scared.  I am composed and anxious.  I have hope and despair.  I am extremely happy and still pissed off.  The love for and from my husband, my children, my family, my friends can not be underestimated in what keeps me pushing me to do more, be more, want more, fight more.

Last year I wrote a detailed timeline of the upcoming dates, which can be found here:  https://relativelyunscathed.me/2015/10/14/a-month-of-remembrances/

This year, I’d like briefly breakdown the timeline of the last couple years as how I have defined them in my mind.

2014

September – October:  Noticeable Symptoms

October – November: Diagnosis, Mayo Clinic, Treatment Plan

December:  Supplemental Oxygen

2015

January – June: In Home Assistance and Tapering and Withdrawals of Prednisone

July – December: Decreased Oxygen Use and “Stabilization”

2016

January – June: Random Medical Struggles – Muscle Testing and Treatment Plan

July – August: Unexpected Improvement with the Realization that Supplemental Oxygen is No Longer Required

September – October: Abilities Testing and Accomplishments 2 Years in Waiting

October and Beyond:  What I hope for moving forward from this 2 year mark is that I can stop…for as long as possible, marking my life by my health milestones (and setbacks).  I’ve already put in place a rule that I’m only scheduling doctors in September and March unless it is an urgent matter.  I am starting a peer-led support group for those with chronic illness starting this November.  I hope I can continue pushing the boundaries of my physical and mental thresholds.  I hope that although not a day goes by that I don’t feel the struggle and reminder of my limitations…that I can continue on my current path of living as close to a normal life as I can muster.

To all those that have loved me, encouraged me, helped me, listened to me, put up with me in all the ways that have been necessary and just generally been there for me and my family over the last 2 years I can’t even begin to express my gratitude.  Thank You!

The Time to Shine

kids in school

I sometimes have ideas for a blogpost long before I am ready to write the whole thing.  In that case I may save a draft with just a meme or just a title or in this case, both.  I thought about this topic somewhere around the end of last year.  What’s interesting about this title and meme is that the blogpost will now end up the complete opposite of what was intended when I saved the first draft.

Having stepped out of the world of full time employment to stay home with my kids 4 1/2 years ago, I’ve had a lot of time to think about what life would be like when I got all 3 of them in school full time.  And when I initially had the idea for this post, it was going to be about how disappointed I was in all the ways in which it didn’t resemble that dream at all.  Not because my dream was too grand for anyone to fulfill, but because my limitations were too great for me to fulfill it.

It was an emotional struggle to know I had so many hours a day without any children under foot and yet, most days I still couldn’t measure up to even the most basic level of standards.  This is probably why the post never got written…it is hard to talk about feelings of failure when the feeling is fresh.  It is easier for me to reflect upon it in hindsight when my spirit is in a more uplifted place.

The main thing that made me give myself a break on it all was the fact that the only reason my 2 year old was even in school at all was because of my illness.  Otherwise, she would have still been with me all day, every day anyway and probably a similar level of inability would have persisted.  In fact, I realized that without this illness, she wouldn’t have been full time in school until September 2018!  So I took deep breaths, found a deep sense of gratitude for having a husband that did not judge me on my shortcomings in the home and continued to do all that I knew to do to improve my life and in turn, the lives of my family.

Fast forward to today and amazing and totally unexpected things have taken place.  I am no longer using supplemental oxygen.  Although still short of breath, I’ve been totally cleared of any heart or lung issues that could prohibit any type of activity.  I have learned to treat my shortness of breath as if I am in the gym exercising (even if I’m just folding laundry or picking up after the kids).  I simply remind myself that if I’m short of breath, that means my body is in exercise mode and I change my breathing pattern to reflect that.  I’ve been able to pick up my walking pace, with the help of deliberate breathing so that whatever short burst I have to give, will allow me to make it to my destination and back (without doubling over to catch my breath!).

With this new found freedom and energy and ability, I’ve put it to use.  Since the kids went back to school I’ve taken on house projects that have been on a list for 2 years now.  I have done things in the last month that would have been unthinkable in the last couple of years.  I’m still not the perfect housewife, but that more often has to do with running out of time in a day, rather than barely starting one.  Well…that and the fact that my husband will always be the better chef in the house, regardless of how much time or energy I might muster.

Today I am reminded that while it is important to know my limits, I must not arbitrarily limit myself.   My symptoms may sometimes whisper great fears into my heart, but it better to follow that up with testing and trusted physicians to better understand what fears are fact and which are fantasy.

Now that it is only September of 2016…I’m 2 years ahead of where I thought I’d be in terms of having 3 children in school full time.  I plan on taking advantage of that time for as long as my health can hold out!

Always.Wanting.More.

i-want-more

Some may look at that title and think that wanting more than what you have is a bad thing…but not me.  It is the thing that keeps me going.  It is the thing that has provided me with drive and determination.  It is what made me travel the world.  It is what made me come back.  It is why I waited to marry until I met the perfect man for me.  It is how I was able to graduate, 10 years post high school, Magma Cum Laude.  It is why I left one entrepreneurial dream to set out to an unknown career path, which led to my most favorite job I’ve ever held.  It is why I had 3 amazing kids in less than 4 years.  It is why I decided to leave my most favorite job for a life home with the kids.  It’s why I wanted us to move to Tahoe instead of Naples.

It is also why I never hesitated to use supplemental oxygen.  It is why I utilized numerous paths of healing from the best modern medicine could offer to meditation and acupuncture.  It is how I dragged myself to the gym when it felt like an elephant was sitting on my chest.  It is how I can wipe away my tears and smile at my children.  It is how I survived with a cannula, prednisone moon face and a humped neck and pregnant looking belly walking slower than the slowest poke in town with a complete lack of embarrassment.   It is how I asked for all the help I could get.  It is why I was able to withstand 3 days of steroid withdrawal symptoms every week for months on end.  It’s why I do not hesitate to go to the ER or call on a doctor for advice immediately.  It is why when we went to Disneyland I ordered and utilized a scooter and registered as a disabled person. It is why I still go outside, even though I have to cover myself head-to-toe to keep out of the sun. It is why I will say yes to a social invitation and also not hesitate to cancel at the last minute of needed.

I always want more out of this life.  As a close friend and confidant recently wrote, “Life is so very rich, and I find myself wanting more.  More time to witness the lives of those I love, more adventures, more experiences.  Always. Wanting. More”  I absolutely couldn’t agree with her more and she inspired this long-overdue post.

I was blessed with a pretty awesome summer filled with a Disneyland adventure, hosting my dad’s 70th birthday week at our home and various fun filled days with the kids and evenings with my husband.  It wasn’t without its struggles or its medical issues.  But it was a happy summer.  It was more…more than we had last year and more than I expected it could be.  I don’t always have an end goal in mind, but wherever I am…I strive to go to the next level.  Some days that is to get out of bed or to take a shower or feed my kids.  Other days…that’s getting to the gym, cleaning the house or doing a favor for someone else for a change.  Sometimes it is just to hang on the the little shred of sanity I might have left in the day.  But I’m always wanting…always striving for more.

Unbelievably, that wanting and subsequent striving has gotten me places that I didn’t know were even possible.  I’m no longer using oxygen.  I did a muscle retest and the effort I’ve put in is registering improvements.  I’m going longer periods of good days.  I ran….I ran without the use of oxygen and my children had a look of shock, pure joy and utter confusion and it was a glorious 30 seconds.  And it doesn’t matter it was only 30 seconds…it only matters that it was more than before.  Once I could barely walk across a room and now I RAN.  No matter what state you are in, you may not be able to be who you once were or have what you once had or do what you once were able to do…but you can always look at any moment and want more and do something to get more out of this life.

Interlude – Machu Picchu

machu picchu

I would like to take a moment and step back into time before moving forward from my grief of my dear friend Jason and continue my blog with stories of our recent Disneyland trip, my family’s visit to our home and my upcoming medical procedures and tests.  So I hope you will indulge me for just a few minutes as I reflect on a place that gave me great peace in my heart one Sunday afternoon.

2 Septiembre 2001 Domingo

Machu Picchu, Peru

Photos are almost meaningless and television does not inspire the mystical energies of the world.  This is why I travel. 
 Many times I have been confronted with the fact that nature and man have powers beyond my comprehension.  Today this fact has been shown to me in the form of Machu Picchu, a place where both nature and man are at their best.  (It is) A place where they have come together in perfect harmony – a place so grand in style, structure, forethought and beauty that the ones who have come before me seem to have remained to fill my heart with love and beauty and yes even “god” as some may call it.
I breathe in the air and it seems to take me away to another place – another time.  If only the Incas were here to tell the tale of this magical place. Instead we peripatetically seek our own answers – all to draw their own personal conclusions as to how this might fit into the “big picture”. Perhaps it doesn’t.
Perhaps it’s just yet another speck of dust created by self-serving humans.  But isn’t that all we are anyway?  Even if this was for the purpose of the Gods – it certainly isn’t for the God’s enjoyment. It could be so our children will not fall ill – our aching bellies will be fed, our old will die in peace.  I don’t know if happiness could feel more pure – more innocent – as it does right now.
I wish I could spend my days writing here – here alone in a room forgotten and re-discovered – a room filled with history unknown. Maybe then I could release my own private history and al the end of the day feel only warmth and goodness. These stone walls are strangely capable of providing the kind of safety and security we humans yearn for from birth until our lonely death.
As people pass me by I am reminded that I am not in a sacred place of my own – but a mere tourist attraction. I snap back for a brief moment to the realities of my life. But as they leave my sight they also quickly fade away from my memory and I can once again reunite with the living spirits of this place.