Biohacking Update: 28 months on the AIP

28 months on the Autoimune ProtocolMatthew returned to work this week.

When he took disability leave at the end of 2013 we thought he’d never work again.

At that time, he was taking 6-8 hydromorphone painkillers a day, as well as a high dose of Methotrexate by injection weekly.

He had developed severe and disabling nausea that no one could diagnose.

Now, the pain and nausea are manageable and he is medication-free, except for a few Tylenol Arthritis a week.

That sounds dramatic, and it is, but there were many times during the past 28 months when his health didn’t seem to be improving at all. And times when it was definitely getting worse rather than better.

But all of his autoimmune symptoms have gradually improved, and he is now in better health than he has been in eight years.

Back to Work

We honestly weren’t sure how the back-to-work experiment would go.

When he initiated it, he was partially bluffing. His health was improving after an intensive yeast-busting protocol last fall, but he still wasn’t quite work material.

He was banking on continued recovery, and that once all the paperwork was done, he’d be ready.

He has competed his first week, and all signs indicate that he can keep it up.

Matthew was the quality manager for an aerospace company before he got sick. When his health started to decline, he switched to technical writing for the same company, as that was less stressful and he could work from home.

Now he’s going into the office for 6-hour days, and has been able to set his own schedule: 7am-1pm. His goal is to be at full-time hours within a month.

On his first day back, he was handed an urgent project to manage so he hasn’t wasted any time settling in!

How does it feel?

Matthew is elated. Getting back to work is such a tangible milestone in his recovery. He is enjoying the intellectual stimulation and his colleagues have gone out of their way to welcome him back.

What about for me?

It’s still sinking in. The past eight years have been incredibly hard.

I admit that I’m still wary. I’m waiting for the next crisis, because that’s what our life has been for a long time now: one crisis after another.

I don’t want to expect the worst, but right now it feels safer than relaxing.

But I am very open (very very open) to some stability, a bit of equilibrium, and the opportunity to begin to trust that maybe things will be okay.

Eight Long Years

Eight years ago, my 14-year old son was diagnosed with a brain tumour. The doctor who gave us the diagnosis told us that “the best-case scenario would be brain surgery”.

None of the doctors we consulted offered any recommendations for treatment. We were simply expected to wait for further testing to determine when his surgery would be scheduled.

In consultation with alternative health practitioners, my son began a demanding regime of non-pharmaceutical treatments and we launched a strict nutritional and lifestyle protocol.

He was scared enough to comply, but I had to manage everything and cajole him every step of the way. Cooking the food, doing the research, finding many thousands of dollars for his treatments (you know: all the mum stuff).

In less than a year, my son was given the all-clear. His tumour had resolved.

I was exhausted and in debt, but it had worked.

Just the Beginning

Once my son’s health crisis was over, Matthew’s health began to deteriorate. His crisis began with a severe flare of psoriatic arthritis and a series of bad reactions to pharmaceutical treatments that were prescribed in an attempt to manage the flare.

One of these reactions was Prednisone psychosis, which lasted for months, as it took a long time to reduce the dose of Prednisone.

For several months, he was in bed 18-20 hours a day and was hardly able to function at all.

That was in 2009. We’ve lived through a hundred other crises, large and small, since then.

My son’s dangerous rebellions throughout his teenage years as he worked through the trauma of his diagnosis and the murder of one his friends. The time Matthew’s fingernails were disintegrating from nail psoriasis and he genuinely wanted to die. My mum’s slow death from throat cancer.

I guess it’s understandable if I’m a little wary about relaxing. But all signs are good.

My children are all well.

If we do get a reprieve, if there isn’t another crisis around the corner, I think I will need to spend some time processing everything that has happened.

Thanks for sticking with me.

37 Comments

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37 responses to “Biohacking Update: 28 months on the AIP

  1. Holy wow, that is an amazing step. I pray and hope and wish that this is your reprieve, and you can finally take a deep breath and relax. ❤

  2. Katie

    You and your family have been most inspirational to me. I can’t thank you enough for sharing your highs and lows ( and
    intellect). May you and yours have peace. May you and yours be healthy.

  3. Marta Deike Brodsky

    Oh Petra! I had no idea of all this except for Matthews illness which, when I joined you, just seemed to be an ongoing chronic condition. Little did I know, things were so much worse. Which makes your success so much more impressive. I understand completely the hesitation to exhale, but I must send you my absolute admiration and congrats. You are an exceptionally brave and smart and compassionate human being. And your family is alive because of you. Moreover, you have and are helping ME, you make my whole investigation of my own super weird, rare illness kind of a fun caper. I hope you continue your blog. Just because Matthew is back to work doesn’t mean we don’t need you. 🙂 wishing you all intensive health and strength and love and comfort from here to eternity. Blessing, my sweet inspiration, Marta

  4. What a beautiful post. I’m really happy for you and your family, and I hope your road continues to level out at this high ground. Thanks for your honesty and bravery about your family’s struggles.
    I also have psoriasis and psoriatic arthritis (along with a couple other autoimmune conditions), so I particularly appreciate the privilege to follow Matthew’s progress. I’ve been AIP for nearly two years and have been making marked progress in waves. You inspire me to (want to) blog, to share answers, but I haven’t gotten around to it for several reasons. Maybe soon….
    Thank you for all the kinds of inspiration you offer.

  5. Sue

    Petra, thank you for sharing your family’s healing journey! All of you have provided such inspiration on so many different levels. And your sharing brings such humanity to this journey…the struggles, , the despair, the triumphs, the highs, the never ending search for answers.

    Hearty congratulations to Matthew on his return to work! and to you for your dedication and support to him, your family as well as those of us following you! To me you are one amazing woman!

    I certainly understand why you hesitate to let your guard down. However, I hope you will allow yourself some much needed breathing room and relaxation.

    Wishing you a day filled with peace and contentment!

  6. Sonja

    Petra, thank you for your honest sharing of so much of your journey. It is that honesty, even more than your brilliant scientific mind that keeps me reading and inspired. Sending wishes for continued good health for all three of you.

    • I appreciate that feedback, Sonja. If my honesty can help anyone feel less alone on their healing journey, I’m happy. Plus, the honesty has been really helpful for me. Sometimes it has felt like we’ve been living in our own private nightmare and writing this blog has helped rectify that.

  7. Kathy

    Wow awesome news Petra! Congratulations to Matthew. Totally understandable that it will take a while for you to shift from vigilance to ahhhh, exhale fully relaxed. Thank you for sharing your journey with such openness and honesty.

  8. Alice

    I am so happy for you. And awed by your phenomenal strength.

  9. Alyson

    Hi Petra:
    I have been following your blog for a long time, after I had a rash that got misdiagnosed as lupus that launched me into AIP research. Although I am fine, I still read your post because I find your devotion to your husband and the intelligence, faith & sheer bloody hard work you have brought to your service so inspiring. I don’t have the privilege of knowing you, but it
    would be a privilege!!
    I was inspired to write mainly because I remember some posts you did a long time back about “peak experiences” which when I read I resonated with … that fundamental okay-ness & alive-ness &
    connected-ness & appreciating the Beauty … as that is what you are, it is always there for you.
    There is a great blog “c ptsd a way out” about mindfulness & the recovery from traumatic stress you may want to check out. Really inspiring. And great intro to the healing power of just connecting with your breath. Maybe it can be helpful for you
    You are a beautiful bodhisavatta …
    Wishing you and your family well!

  10. Sarah

    What a huge step for Matthew and a milestone for you. You are truly inspirational, probably for more people than you will ever know. Thank you for everything that you share with us.

  11. Amanda

    What an amazing story! Congratulations to all of you! Your perseverance and belief that it could and would get better is so inspiring. Your skills in actually doing it are incredible. And your honesty is something to aspire to. Thank you for sharing these pieces of yourself. All the best in this new chapter and beyond—

  12. Lynda Maloney

    My Dear Petra,

    I had no idea your son (and you and everyone else in the family) went through a health crises as monumental as a brain tumour. I’m glad Matthew is back to work and all is well right now. My heart goes out to you all and maybe you could sneak in some relaxation when noone is looking!

    Lynda

  13. Ivonne

    Hi Petra,

    Just commenting to send you some love and good wishes. I read your blog regularly (my favorite, actually!) and would love to be able to give at least something back to you.
    Reading this, I relate a lot with the feeling… Going back to work can be both exciting and stressful. I couldn’t help but to be weary myself, since work can induce several flares. But as we heal, as a family, crisis become if not smaller, at least easier to overcome.
    May such crisis never come and may Matthew and you fully enjoy this amazing milestone.

    Hugs,

    Ivonne

  14. enjoyingthisjourney

    I’m genuinely happy to hear of Matthew’s improvements and how much healing has taken place in the last 28 months. I know it wasn’t an easy road, but together you took those steps. Petra, you are an inspiration. Your unconditional support and love for your family is clear. *please take some time to yourself* 🙂

  15. Shugaku

    Hi,
    I’ve read your blog for two years and never left a comment but this last post almost obliges me to introduce myself. I had no idea you had all that going on as well as Mathew’s illness.
    I was diagnosed with psoriatic arthritis two years ago and have been following an modified AIP diet since. I am not in complete remission but am completely drug free (not even the Tylenol) and manage to work full time and look after small children. Your blog has been a source of inspiration and encouragement when I went through flares or stagnated in my recovery. Thanks for putting yourself out there, it is helping people you have never heard from!
    My best wishes to you and to Mathew. Incidentally I have managed to accelerate my skin improvement (which has been very slow) by taking n-acetyl cysteine supplements. It is the only supplement I still take, perhaps it will help Mathew too?

  16. Ann

    What a journey! I appreciate your
    vulnerability in sharing this! I can relate to your feelings of not being able to relax. Are we really there yet?

    My hubby went through a health crisis
    almost two years ago and is now
    on the road to healing and back to work. His was related to stress, anxiety and depression, but the manifestation was physical. A small part of his healing has been writing about it.

    Again thank you for writing this! May the healing continue in your family!

    • Thank you so much, Ann. I am very aware that we’re not out of the woods yet. Matthew’s improvements feel miraculous but he needs to be careful. He’s loving being back at work but doesn’t want to gt in a situation where added stress causes a flare and a a reversion of his healing. We’re not sure what new his capacities are yet, so we’re cautious, but thrilled.

  17. Dawn

    Life seems to come to us in bunches Petra. Even your emails. I put them aside to read them for when I am less hurried, because they are delectable treats meant for reflection. Thus, this seemingly tardy reply. Congratulations to both you and Matthew for coming through something so transformative, together. Illness happens to families, not to individuals. And wives and mothers take the illness on, regardless of which member has the diagnosis. In my past life, I was a chaplain at St. Paul’s here in Vancouver. I frequently heard people talk about “beating” their illness, whether it was cancer, HIV/AIDS, etc. I found, however, those who truly healed never “beat” anything. But rather, they learned to overcome themselves. Your blog has been inspirational to so many people (who likely will never comment), because you have offered them a practical guide and shared your journey of how you overcame yourself with such deep honesty. You did this while navigating all that life continued to placed at your feet. Motivated by a desire to merely connect with others in a similar situation, you became a source of light for your family (and many who you will never meet) in their challenge to overcome themselves as well.
    Thank you for everything Petra.

  18. Sorry to hear about your testing period there! it sounds like quite an ordeal. I’m currently going my own little health crisis right now, and I know how tough it can be. Just wondering if you guys have come across Jack Kruse’s stuff, it could be really helpful possibly if you still need to make any progress?

    His stuff can be found at Jackkruse.com – his information has been really helpful to me personally, so not trying to spam, just thought it might genuinely help 🙂

    Cheers,

    Peter

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