Guest Post by Angie Alt: The Compromises of Autoimmune Disease

March 20, 2013 in Living with Autoimmune Disease

Angie AltAngie Alt is wife, mother, world traveler & blogger. She’s also a warrior in the autoimmunity war. Angie confronts three autoimmune disorders each day, including Celiac Disease, with powerful management techniques like AIPaleo & the Paleolithic lifestyle. She blogs regularly about the emotional side of tackling autoimmunity, adopting Paleo, and how it impacts her, her family, & their way of life. You can read more by Angela Alt at her blog and connect with her on Facebook.

The following is a very personal story, but I think it is a familiar one in the autoimmune community.  After much discussion with my husband, I’ve decided to share here.

 When it comes to dealing with the realities of an autoimmune disorder (or multiple disorders, as the case often is), I am a firm believer in a positive outlook.  Basically, if I didn’t try to keep it “on the sunny side,” I’d be in trouble.  An AIer makes alot of compromises and some of them are heartbreaking.  It would just be endless depression if I focused on all that grief all the time.

 That being said, recently I’ve had to look closely at some of those losses.  I found myself in situations where I needed to articulate my emotions about them.  It turned out to be a cathartic exercise and I thought I would write about it for The Paleo Mom, since it is such a big part of living with autoimmunity.

 One of my greatest losses was fertility.  I actually have a child.  My daughter was born when I was in my early twenties.  At the time I had no idea that my journey with autoimmunity had begun with the birth of my baby.  I was even less aware that I would one day be facing secondary infertility.  I’d just had a baby; naturally it did not occur to me that when I was ready to have my second, it just wouldn’t happen.

 When that reality did sink in, three years after we started trying, I wrestled with so much pain.  My husband and I had been so excited to add to our little family.  There were times that disappointment felt like it had swallowed my heart.  I didn’t dare walk by the baby clothes in a department store and I never allowed myself to think very long about my daughter without a sister or brother.  Those tiny clothes or the idea of happy, giggling siblings . . . both constantly threatened to bring me to tears.  I focused hard on how lucky I was to have my beautiful little girl and worked tirelessly not to let envy eat me up when all our friends started having babies and growing their families.

 A lot of time has passed since the first glimmers of hope for a new baby.  It’s been six years.  Half of those years, I was so extremely ill that I could barely think about the dashed hope.  Honestly, I often told myself that it was better . . . I could barely care for my own sick body, so it was better that I didn’t have an infant or a rambunctious toddler.  Then I got a diagnosis and began the slow climb to health.

 Knowing what caused my infertility hasn’t been much of a comfort.  As I have learned more and more about autoimmunity, I have realized that despite my best efforts at healing, I might never regain fertility.  It might be one of the things that have been irreversibly damaged by AI disease.  Worse yet, pregnancy might even pose a huge risk for me, resulting in even greater autoimmune struggle.

 I often think, if I could heal enough to recover fertility, I would just endure any autoimmune flares for the joy of a long wanted baby, but that would also mean undoing hard mental and emotional work my husband and I have done.  We decided a few years ago, after I’d had laparoscopic surgery, that we were okay with our family being just the three of us.  We have concentrated on raising an awesome kid and started to plan for being young empty nesters.  Starting over with the sensitive ups and downs is not a simple decision now.

 Sometimes my husband and I still talk about the names we had picked out in the beginning, when we thought it would happen easily.  I’m not sure if we still love the names or if we have both decided, without any discussion, to stand by them loyally.  We’ve accepted the infertility as the collateral damage of autoimmunity, but it seems a bit wrong to give up on the names for a little life we thought would be.

 I know at times it seems unimaginable, but I have actually gained some incredible things in my life due to my multiple autoimmune diseases.  Even with the gains, I think a big part of keeping a positive outlook is occasionally taking a minute to reflect on all that was compromised.

Guest Post by Angie Alt: Autoimmunity, AIP, & Family Life

November 27, 2012 in Living with Autoimmune Disease

Angie Alt is wife, mother, world traveler & blogger.  She’s also a warrior in the autoimmunity war.  Angie confronts three autoimmune disorders each day, including Celiac Disease, with powerful management techniques like AIPaleo & the Paleolithic lifestyle.  She blogs regularly about the emotional side of tackling autoimmunity, adopting Paleo, and how it impacts her, her family, & their way of life.  You can read more by Angela Alt at her blog and connect with her on Facebook.

I’ve been on a long, looong journey with autoimmunity.  It started about 12 years ago and in February of this year, I believe I finally got the full picture when I was diagnosed with Celiac Disease (in addition to two other previously diagnosed autoimmunes.)  I’ve been a mother that whole time and married for seven of those years.  My entire autoimmune journey has been conducted with a family at my side.  I’ve been thinking a lot recently about how chronic illness (as autoimmune disorders often lead to) and management strategies, like AIP, impact family life.

 As anyone with an autoimmune disorder knows, the level of illness changes over time.  At points I was keenly aware that something was wrong as I struggled with flares of painful and confusing symptoms and at other times, things would seem to have completely disappeared.  For me, the last three years were the most extreme and the rollercoaster ride was grueling not only for me, but also for my husband and daughter.

 My sickest years coincided with our family living in West Africa for my husband’s work.  The bewildering, irregular symptoms were virtually impossible to nail down there and resulted in three medical evacuations.  Even more disheartening, I found little to no help from the mainstream medical community each time I returned to the U.S.   It was intensely stressful and frightening for all of us.  I felt ashamed and guilty for putting my husband and young daughter through such traumatic events over and over.  As my shame and guilt grew, so did my emotional distance from the two people who cared about me most.

 Last October, it became clear that I had to return to the U.S. permanently and dedicate myself to finding an answer.  It meant that my illness was effectively ending my husband’s work abroad.  While he knew this was the right decision, it was a complicated transition.  Quite obviously, it was hard on our marriage and parenting.   None of it helped my guilt and shame.  I blamed myself for putting my family in such a spot, especially as I saw doctor after doctor and still got no answers.

 On the other side, my husband felt helpless.  It was clear to him that I was steadily becoming sicker, but without clear answers he did not know how to address the situation.  He was privately afraid of what might be wrong, but nervous to express his fears.  As he struggled to balance his career and role in the family, with the pressures of taking care of my needs, he became insecure about how to label it for our family and friends.  I had previously been a solace for him, but now I was a source of anxiety.  His guilt and shame over these negative emotions also grew and widened the gulf between us.

 That “in-between” was inhabited by our daughter.  Naturally, we did everything possible to shield her from what we could and help her roll with the punches where we couldn’t.  Nonetheless, autoimmunity sometimes looms over a whole family, touching every member.  She ended up attending multiple schools for the third and fifth grades, in large part due to our attempts to discover and treat my illness.  We celebrated her 10th birthday just days after I got out of the hospital (with chronic appendicitis and endometriosis complications).  The photos of that day show me with dark circles under my eyes and a gaunt body.  I actually missed her 11th birthday party, because I was again in the hospital, suffering through what I now know was a Celiac crisis.  Most of the time she has been incredibly strong and flexible, but occasionally she tells us how hard it was to walk through such a scary period not knowing what was wrong with me or what her place was supposed to be in it.

 With all of that build up, you can imagine the flood of relief for all of us when I was diagnosed in February.  Knowing was half the battle for our family.  The more I researched, the better we understood the whole autoimmune process and so much that was unresolved for us came together.  In May, after three months of struggling to get my health on track with a traditional gluten-free diet, I discovered The Paleo Mom & started AIP.  It was an incredible breakthrough in my healing.  Not only did we understand autoimmunity, but we also began to understand nutrition’s role as a serious way forward.

 As I have passionately followed it for nearly seven months now, it has changed our lives again.  I’ve come to understand that it will not “cure” me, but it has had amazingly positive impacts on all three of us.  For starters, I am 1,000% healthier than I was a year ago.  Being healthier has allowed me to begin dealing with all the guilt and shame.  Letting that go has meant renewed connection to my husband and daughter.  No more brain fog and debilitating fatigue means we can begin to process together what chronic illness has meant and mend the damaged bridges.

 For my husband, a return of my emotional stability, in particular, has allowed him to open up and our marriage to heal.  It also resulted in him adopting Paleo 80/20 and dropping dairy entirely.  When I discovered a new functional medicine doctor, he saw her too and learned about Vitamin D & magnesium deficiencies he needed to treat.  He’s lost weight and restarted his beloved fitness routines with great results.

 For my daughter seeing me slowly return to health has meant that we can enjoy more time that feels secure and less unpredictable in the face of autoimmune flares.  Gradually, we have worked to deal with each upsetting moment from our past.  And while convincing a 12 year old to drop a SAD diet is not the easiest thing on the planet, she got on board after we finally drew a connection between migraines she has suffered since she was a toddler and gluten.  She is now roughly an 80/20 Paleo girl too, with 99% avoidance of gluten at all times.  The results have been amazing.

 We plan, prepare, and clean up countless meals together every week now.  My daughter has a better understanding of real nutrition than almost any child her age, for that matter, than most adults.  We have a 100% gluten-free household and my family’s support on that non-negotiable has been humbling for me.  We’ve discovered new treats together and stretched ourselves in an effort to heal from the negative impacts of autoimmunity.

 This is actually just a small silver of the way autoimmunity and AIP have altered our family life.  I can’t say that I am 100% able to view this journey as a blessing, but I can say that our bond has actually gotten stronger despite the serious pressures.  We’ve weathered some major storms together as a family and managed to come out on the other side with some significant rewards . . . the gifts of health and each other.

TPM Tidbit: Dangit! It’s the chocolate! (My face palm moment)

October 5, 2012 in Sarah's Personal AI Struggles, TPM Tidbits

I love chocolate.  Sometimes, I feel like I need chocolate.  Very dark chocolate is one of the ways I satisfy sweet cravings without actually consuming many carbs.  Chocolate is my Go To stress food.  Yes, these aren’t great habits.  But it’s better than what I used to do.

So, even when I started the autoimmune protocol in January, I ate some chocolate (so many people report tolerating chocolate).  In April, I learned how ridiculously high in phytic acid it is, and cut it out completely.  This is also when I saw dramatic improvements in my lichen planus, but I never linked it to cutting out chocolate.

But then, the stressful summer hit (refrigerator leaks, mold growing in the floor, replacing kitchen floor, sick cats, family dynamics, finding out we need a whole new HVAC, finding out my husband’s car is on its last legs, the stress of the kindergarten transition…).  I once again turned to chocolate as my buddy, my confidant, my friend through thick and thin.  I wanted to tolerate it so badly that I ignored the warning signs that my lichen planus was no longer healing (although not getting worse).  And then I had tomatoes.  I think that was kinda like adding gasoline to an already roaring fire.

Last Saturday, I posted a post about my frustration with my current lichen planus flare.  I received dozens of wonderful comments, many with suggestions on what I might be able to change to address it.  One e-mail I received, pointed me to this paper showing that high Vitamin-A consumption can exaggerate a gluten reaction.  Seriously?!  Well, I am consuming a ton of Vitamin A, so this got me thinking.  And I consuming gluten?  Or a food that cross-reacts with gluten?  I was already aware that coffee cross-reacts with gluten, so I just needed to see if any other foods I was consuming were also gluten cross-reactors.  On this list was chocolate (which I consume frequently), yeast (and I’ve been drinking kombucha, eating homemade sauerkraut and eating a little yeast-based paleo bread), and tapioca (which I’ve been using in baking a lot lately).  A light bulb turned on in my head.  And then the cursing began.

The difference in my lesions in just 5 days is astounding.  Many of the smaller lesions higher up my shins are gone.  I actually took before pictures this time, so in a week or two I will post them with after photos to show you the difference.  I am really ticked off that I can’t eat chocolate, but I am happy to have found my missing link.

Still Looking For My “Missing Link”

September 29, 2012 in 2012, Sarah's Personal AI Struggles

This post is about frustration.  My frustration.  With my [expletive deleted] autoimmune disease that seemed to be improving dramatically in the late spring, then flared after eating tomatoes in July.  And three months later, it’s still not getting any better (although thankfully, I seem to have stabilized and am not getting any worse).  I get that nightshades are a problem for me, but what happened?  Not what happened to cause the flare (clearly tomatoes and stress), but why is it taking so long to heal?  What am I doing wrong?  Or maybe more importantly, what was I doing right before?!

The reason why my blog has so much autoimmune disease content on it is because I personally suffer from an autoimmune disease called lichen planus, a skin condition similar to psoriasis where itchy, painful, scaly purple lesions cover my ankles and shins (I have had lesions on my wrists and forearms in the past, but these have fortunately not reappeared with the current flare except for a couple very small spots).  Understanding which diet and lifestyle changes can mitigate autoimmune disease is something I am personally vested in and care deeply about.  I am constantly trying to understand the various facets of the paleo diet autoimmune protocol, research nutritional and herbal supplements that may help, and tweak as many different aspects of my diet, lifestyle and environment as I can to get a grip on my disease.

So, what was I doing right in May and June that saw such dramatic improvement?  I was following the autoimmune protocol (with the notable exception of occasional bites of nut- or egg-containing foods).  This was before I gave up coffee (yes, for those of you keeping track, I am still too chicken to try reintroducing it).  I spent a good amount of time outside (but I was still outside a good amount after the flare too).  I went on an amazing weekend trip to the beach with my family (stress relief?) and got a sunburn (vitamin D?).  I got sick immediately upon returning home (did I take any immune support supplements like zinc, Vitamin C or Echinacea?  I can’t remember, but it’s likely.).  I didn’t wear any makeup for a few days between the vacation and being sick (I know my make-up is gluten free, but maybe there’s a chemical sensitivity piece to this puzzle?).  I was eating similarly to how I eat now (maybe more coconut oil because I was drinking it in my coffee?).  I was getting about the same amount of sleep as I am now (and I’m sleeping way more soundly these days which should help!).  My activity level was about the same.  Am I more stressed now?  Even though I am sleeping well, I do feel quite tired, but that may just be a symptom of the flare.  Do I need to go back to the strictest version of the Autoimmune Protocol for a while and the reintroduce the foods that I seem okay with?  There’s just nothing obvious and it’s so frustrating!

Being frustrated makes it harder to comply with a very restrictive diet.  For me, the hardest part is sticking with the low sugar aspect of the autoimmune protocol.  I’m hanging in there, but I find it’s more of a battle and much more willpower and discipline is needed these days than usual.  I have added some supplements in the last couple of months (notably Fermented Cod Liver Oil and L-Glutamine), and these do seem to be helping and I think are a large contributor to the fact that my lesions are no longer growing.  I am working to switch up any supplements I was on that had potentially irritating fillers (mostly trying to steer clear of magnesium stearate).  I am also in the process of going chemical-free in my house.  I gave up shampoo in late April.  I am in the process of giving up my skin care products (and this one is tough for me because I’ve always liked them!) and moving to just using Tropical Traditions Gold Label Coconut Oil on my skin (actually, my skin is looking pretty great so far!).  I am giving up makeup on a trial basis (this one is hard!).  I didn’t like the Tropical Traditions deodorant so I’m still trying to find a chemical free solution for that (next thing to try will be making my own).  I have switched to Tropical Traditions liquid hand soap (which I LOVE!  I’m even using it to shave my legs and it’s awesome).  I have stopped buying our old cleaners and we are switching to a combination of different chemical-free cleaners and using vinegar too.  I am giving our tap water a very critical eye and am making an effort to only drink filtered water (I already did this for straight water, but I’m also trying to use filtered water to make tea and steam veggies etc.).  I feel like I’m constantly tweaking, constantly trying to find my missing link.  And the more I research and learn, the more possible culprits there seems to be.

When we recorded this week’s episode of The Paleo View, we had Diane Sanfilippo of Balanced Bites and author of my absolute favorite paleo resource book Practical Paleo (seriously, I cannot recommend this book highly enough.  You can read my review here).  Diane is one smart woman plus super nice (is there any better combination?!).  She was kind enough to chat with me a bit about my disease and what I’ve tried so far after we finished recording.  Very reassuringly, Diane confirmed that I’m on the right track.  She had some good supplement ideas, which I am going to try (changing up my vitamin D3 supplement, adding more fermented cod liver oil, trying a gamma linolenic acid supplement, using the Green Pasture Beauty Balm on my lesions, going to a tanning bed, and continuing with my efforts to reduce chemical exposure by changing beauty products and household cleaners).  I will be doing my best to change only one thing at a time, so this may take a while.  But, it helps me to have a plan.

Diane also had something really important to say that I needed to hear.  Sometimes these things just happen.  For people with autoimmune disease, there is no cure.  The disease can be in remission for years, maybe our entire lives, and it feels like it’s gone, but it isn’t really.  You can do everything right and still have a flare (the converse is true too; some lucky people can do everything wrong and still reduce symptoms).  Lichen planus is known for flaring up for 3-5 years and then mysteriously subsiding.  I hope I don’t have to wait years.  I hope I can figure out my missing link.  There is much more that is not understood about autoimmunity than understood.  And there is so much that is individual.  It’s about much more than just diet.  And time is such an important factor.  I might be doing everything right and all I need to do now is be more patient.  That’s not easy.

So, what do I do when I’m frustrated?  I take some deep breaths and try to focus on the positive.  I have a plan for the near future thanks to the brilliant mind of Diane Sanfilippo.  I have an amazing paleo support network developing around me because of my blog (that means you!).  My lesions are no longer getting worse (big sigh of relief) and I do not have to slather my skin with steroid creams to make it through the day.  Actually, that’s pretty positive, isn’t it?  Maybe all I really need to do is redefine success?