Fantastic Toys - Printable fun!

The past few days I haven't been feeling great and have been a bit run down. Whether it's my APS or Sjorgrens' or Connectivity Disease I can't tell you... I only know this feeling as one thing: Fatigue.  There's no sense in looking for reasons cause I know what I need to do... rest.

But with a happy, energetic three year old in the house every afternoon that's not always easy.  It's also not entirely fair to plop her in front of the TV for four hours or force her to have a long nap cause 'Mommy is feeling tired.' Instead I try to invent activities that don't run me down and that are new and exciting to keep her entertained.

Thank goodness for creative people like Timothy Haugen at Fantastic Toys!! I bought his Mushroom Cottage Playset via his Etsy Shop today to assmble and play with Sera this afternoon. Fantastic Toys has many different playsets you can purchase for just a few Euro and they're adorably designed.  The other great thing is that you can print them over and over again because the PDF file is yours to keep!  With all the cutting and pasting we're sure to have an easy, relaxing time and I'm sure Sera will love playing with the finished product!

I've created other toys from printables online in the past. Remember these Cone Girls? Sera still plays with them!

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Negli ultimi giorni non mi sento tanto bene. Che si tratti di APS o Sjorgrens o la malattia connettività non posso dirti ...  so solo questo sentimento come una cosa: Fatica e stanchezza. Non c'è alcun senso nel cercare ragioni perché so già quello che devo fare... riposarmi.

Ma con una felice, energica bimba di tre anni in casa ogni pomeriggio non è sempre facile. Non è neanche giusto possizionarla davanti alla TV per quattro ore o costringerla ad avere una lunga sonnellino perchè ' la mamma si sente stanca.'  Cerco invece di inventare attività  dove non devo muovermi troppo e che sono nuovo ed eccitante per mantenere il suo attenzioni .

Grazie a Dio per le persone creative come Timothy Haugen a Fantastic Toys! Ho comprato il suo Mushroom Cottage Playset via il suo Etsy shop oggi. Fantastic Toys ha molte playset che si possono acquistare per pochi euro e stanno adorabilmente progettato. L'altra cosa bella è che è possibile stampare più e più volte perché il file PDF è il vostro da mantenere! Con tutto il taglia e incolla siamo sicuri di avere un pomeriggio divertente e rilassante e sono sicuro Sera amerà giocare con il prodotto finito!

Ho creato altri giocattoli dai PDF nel passato. Ricordate questi Cone Girls? Sera li gioca ancora!

♥ Jess

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Paleo-AIP progress, four months on

Bacon wrapped apricots with sage

Back in September I started a pretty restrictive Paleo-AIP diet in the hopes to find some relief from several autoimmune diseases I suffer from. That meant I could no longer eat any grains (gluten or gluten-free), dairy, legumes, nightshades (tomato, potato, eggplant and peppers), eggs, seeds or nuts. In theory I should have also excluded alcohol, chocolate and coffee, but never did. (I'm a bit of a coffee drinking chocolate indulged wino it seems)

The main concern I heard from friends and family was that I would lose too much weight on the new diet. I'm thin as it is and have, when I've been unwell, come to look quite sickly when I lose a kilo or two.  They were worried that by excluding carbohydrates from my diet (something that happens quite naturally when you remove grain) that I wouldn't have any energy and would not maintain any fats.  I do have to admit that I have lost a few kilos since starting the diet, but my energy levels are an all-time high (just have a look at my other posts!) and even though I weigh a bit less I'm not looking sickly because of it. It's as if my body has found its ideal state.  I am also careful to make sure I'm eating enough healthy fruit and vegetables so I can maintain some kind of carbohydrate intake as well as fibre.

SCD & Paleo Vanilla Granola

Four months on and I'm still very very happy with the changes I've seen in my health.  I have more energy and less pain and swelling. I'm sticking to it!

I did fall off the waggon a few times, only to be reminded by my body, quite aggressively, that this diet is the best thing for me right now.

At Halloween I ate a load of Sera's candies and ended up with the worst pre-period acne I've had in years. That month the amount of refined, processed sugar I had consumed really messed with my hormone levels and triggered a big PCOS flare up. No more candies for me!

Then a few weeks back I made a spinach sformatino (eggs in the oven essentially) and ended up with terrible terrible stomach cramps from the cheese I added. Since I had experimented with hard cheeses and didn't have adverse reactions I decided to try out softer cheeses and it was a fail.

BLT Zucchini 'Pasta'

I'm still playing around with figuring out what I can and can't eat without getting sick.  This morning I had yogurt and haven't felt unwell but will have to wait to see if it triggers inflammation in my joints in the next few days.  It's a super-interesting process and I'm pleased to say I've reintroduced eggs and nuts without much trouble.

I've been cooking loads as well and would love to direct you to some of the best recipes I've been using over the past 4 months and some I've just discovered!

-Cauliflower Fried Rice from Mickey Prescott's cookbook Autoimmune-Paleo
I eat this at least 5 times a week. I like this version because of the turmeric and ginger but you can search for other versions on line. There are loads of options!

-SCD & Paleo Vanilla Granola from Danielle Against All Grain
I've only just recently whipped up my first batch of this stuff but breakfast tomorrow is going to be heavenly! Yum!

-Taco Lettuce Boats

-BLT Zucchini pasta from Ali at Inspiralized
This stuff is heaven sent and really sticks to your insides... I just leave out the tomato!

-Bacon wrapped apricots with sage

These are lovely appetisers for a party! You can do the same thing with prunes or perhaps figs wrapped with prosciutto!

-Lebanese Kebabs from A Clean Plate

Yum yummy Yum!

Since starting this foodventure I've been lucky to find how many foods I enjoy that I'd never even tasted in the past!  I can't believe I went 34 years without discovering pomegranate! I'm now in love with the fruit and eating it 3 times a week (while it's in season). 

I have a lot to be thankful to this diet for. If you're reading this and you also suffer from any sort of an autoimmune disease I suggest you run out right now and try it!  Oh, and get well soon!

♥ Jess

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The Universe Delivers the Lessons

Last night we went out for dinner.  It was really quite nice and the food was great but the reason why I'm posting is because something interesting happened while we were there. I was taught a profound lesson in compassion and tolerance 100% relevant to my own life and current situation without even getting up from the table.

The couple at the table next to ours were in their 60's. They weren't married (at least not to each other) and it seemed as if it must be relatively fresh into their relationship.  She was loud and a strong woman. Her voice cut through the restaurant and she was hard to ignore. As soon as they sat down she grabbed my atterntion  because she kept using swear words and I was noting my own reaction to them. I thought it was crass and unnecessary and I was glad that I outgrew any form of swearing with adolescence. It made her seem uglier to me even though otherwise she was a sophisticated lady.

When people hear Fabri and I speaking English, they often assume that you just can't understand Italian at all and proceed to talk about you, or your child openly with their company.  This too happened... luckily they were talking about how nice Sera was behaving and a little bit about the difference between a Nintendo and an Ipad.

We continued or meal.

But then I head the word autoimmunity.

A new conversation had begun at the next table over and the woman began asking, no, interviewing the man about the subject.  How do you catch it? Why does it happen? Is it transmittable to others? What is the outcome? How can it be cured? Will a child get it if its parents do? Why is it hard to diagnose? Does it go away?

The answers popping into my own head to her questions were synchronised with his and I began to wonder if I should interrupt them and start asking him my own questions. Perhaps he was an expert in the field?  But then I decided to just listen and let them get on with their evening considering I'm currently satisfied with my level of care.

I listened and listened and after about 15 minutes I realised why the universe had brought these two to the table next to mine to have that conversation. I had something to learn.  In the past I have been impatient with my husband, mother, relatives, friends and acquaintances when talking about my autoimmune disease.  I have been frustrated that they haven't believed me when I explain that I am doing my best to take care of myself and that there's no quick cure or special doctor that I can just call.  I have felt accused by them of not wanting to get better... I have taken their suggestions on diet and exercises and rest as insults.  I have pushed them away because of it.

Watching this crass and classy woman ask impartial questions to this man who either was or wasn't a doctor, two strangers, set off a light bulb in my head.  The only reason why the people who love me ask questions or make suggestions or doubt what I tell them about my disease is because they just don't know anything about it.  I suddenly realised that I really am an expert on autoimmune diseases (at least my own small collection of them) due to my vast 13 years of experience in the field.  How on earth can I expect a friend or relative who's only just hearing that these diseases exist or only now coming into contact with someone who has one to possibly understand as thoroughly as I do what it means and the road I've had to travel towards accepting it?  My heart suddenly opened up to this woman with the loud voice whom I was judging moments before as well as to everyone who has ever taken the time to even talk with me about my disease.  I was wrong to place my anger, fear and sorrow on you all. I will try to do better.

On another note, the revelation has made me so much more compassionate and sympathetic to other people's individual situations.  I can't possibly comprehend what it means to be anyone else or to be in their skin.  I can't possibly ever assume to know what someone is living or feeling. None of us can.  We're each so completely unique and have our own gifts and challenges in this life. I suddenly understood that it would serve me well to have more humility in my encounters with others and to always assume that I don't know anything about them or their lives... It's clear now that this is accurate more of the time than assuming that I know everything about them and their lives!

I find it amazing when the universe teaches you a lesson that you so desperately needed to learn, even if you didn't know it before hand. Keep your eyes open for these lessons!  Last night was proof that they do come! They're probably the most valuable ones we'll ever learn.

Autoimmunity part 5 - limbo without the fun music and my new friend Hughes

I've been holding out on you, dear readers, on the latest instalment of the adventure that is my autoimmunity. I'm not one for cliff-hangers and hate when my shows break up for the summer so I decided not to give you half of a story without a resolution, but now that I have a resolution I figured you might like to hear the whole story.

Remember in July when I found out that I was stupidly taking medication for one problem which was completely contraindicated for the other? I had been taking the birth control pill for my polycistic ovaries but shouldn't have been because it increases blood clotting and I carry antiphospholipid antibodies. Then all through August I had fatigue and it got me thinking.... What else do those antibodies mean?

I did some net-research (never recommended by the way... Make sure you cross check anything you discovered on line with your doctor) and realised that maybe the fatigue and headaches and vision problems were never related to my connective tissue disease, maybe they were connected to the antiphospholipid antibodies and a clotting disorder called Hughes Syndrome, sticky blood or APS. Maybe I had had a stroke and not known it. Maybe when I blacked out in a health-food shop in Grenoble in May I had really had a mini stroke. Maybe when I lose balance it's because oxygen isn't getting to parts of my brain because I have blood clots!!!! Maybe I can't feel my arms and legs sometime for some neurological reason. Maybe I have the neurological manifestations like MS that APS can provoke.  Maybe maybe maybe. I thought maybe I'd talk to my immunologist before going crazy.

And he said maybe I was right. 

Now, if I was into cliffhangers this is where I would have left you on September 10th. Instead I'll tell you how the MRI went.

I think the hardest part of the MRI was waiting for it for the two weeks. I was very worried that I would feel claustrophobic in the tube or panic or move and they'd have to start over. I was worried that it would take a log time and what Sera would do in the waiting room. By the time we actually got to the waiting room I was really worked up and was yelling at Sera and hubby repeatedly. A kind nurse showed them to a room full of toys for Sera to play with.

I wore clothes with no buttons or zips so that I wouldn't have to take them off in the machine. They made me take them off anyways and that made me feel vulnerable and sad. I waited in a hospital gown outside the room on a cold metal chair while a couple of off-duty doctors gossipped across from where I was sitting. It made me feel vulnerable and sad.

The technician who put me in the machine was kind and I was ready to relax and try to use my meditation breathing techniques inside. I closed my eyes as the table set up. I was given headphones to 'protect my ears' but they were horrible and didn't help with the sound at all.  

The sound. The sound was insane for lack of a better word. Not scary but shockingly loud to the point of exaggeration. It seemed impossible to me that the sound I was hearing was just a consequence of the machine doing its work and not some joke by a sadist. It seemed completely ridiculous the randomness of the patterns of sound. Some people say it sounds like a jackhammer or drill, but it's quite a bit more guitar like than that. It's heavy-metal strumming. It's a concert with one instrument. It's random and on purpose. It's mathematical in the same way the universe is.

You may note that I had quite a profound voyage while pondering this sound inside the machine.

And then it was done. 

Having not moved a muscle for 35 minutes it took some time for me to get moving and to get off the table. As I was doing so I realised that one wall of the room was glass and behind it was he technician who was currently looking at the scans. I was suddenly embarrassed that I wasn't moving faster, that I needed the extra seconds to get my body moving.

I cried in the 'dressing room' which was actually a supply closet.  It may be that I was having a flashback to my post-partum experience (if you're interested I'll tell you about that someday) or just because I had two weeks of stress anticipation to get through and was relieved it had gone well and was over. I was so happy to get back to Sera and hubby playing happily in the real world.

I got the results so much sooner than I expected. I went to the pool with Sera the next day because I finally felt like getting on with my life and My immunologist called just after I got home.  

The scans were clear.

Celebrations!

for those of you who wonder what's going on in my head.
That's actually how I look in profile!

My doc and I have decided to start treatment for the antiphospholipid antibodies despite me not having had a traumatic event regardless. Having clear scans now doesn't mean I haven't had a transient ischemic attack in the past and doesn't mean I won't have one in the future.  It's unclear why some patients with APL (the anitibodies) have 'events' and why others don't. I guess I'm just lucky for now.  I don't currently have APS but do have APL so that's enough to take precautions.  I contacted someone at the Hughes Syndrome Foundation in the UK and they confirmed that I should be treating my disorder now as a preventative measure.  It means I will probably be on blood thinners for the rest of my life but on the upside those same blood thinners may help with my eyes and fatigue. The Hughes syndrome foundation claimed that it may help with my joint pains and digestive inflammation as well. 

I'm feeling wonderful because not only do I not have any damages but I am also on the road to feeling better with a new medical regime and diet.  No cliffhangers here.... Let's hope that we don't have to sit through another episode of 'autoimmunity' for a very long while.

For more information on APL and APS/Hughes Syndrome visit the Hughes Syndrome Foundation's fantastic website.

For more posts on autoimmunity click here.

Paleo-AIP progress

Well, I've been following (or almost following) a strict Paleo-AutoImmune Protocol diet for the past two weeks and I thought I'd give you an update on how it's going.

For a full list of the foods permitted and not permitted on the diet have a look here.

First, I would like to list the things in the AIP diet that I haven't managed to cut out as of yet, but am intending to in the near-future. The reasons why I haven't eliminated them yet vary, but mostly it's because I am taking things at a pace that feels right for me and have found in the past that I am more successful at change (diet or otherwise) if I follow my instincts completely. The forbidden foods I have eaten in the past weeks are:

• chocolate
• red peppers (if only because I made these wonderful stuffed peppers and have yet to finish them all... my last hooorah!)
• wine (it's Italy... this will be the last to go and the first to return)
• goats and sheep's cheeses 
• potatoes
• sugar
• coffee
• NSAIDs (aspirin)

Of course with a list this long of foods I'm still eating you'd be surprised to hear that I have had any changes at all in my symptoms, but I assure you I have.  In the past I would eat my food and then almost immediately have brain-fog, sleepiness, crankiness and heavy bloating in my abdomen (especially gluten heavy meals like pasta). These symptoms have disappeared. I am also experiencing less hunger and nausea in between meals. It's funny, I never even realised that that weird sensation I was having between meals happened until it stopped happening.  So I think the diet is working on an intestinal level.  

I haven't had much relief from the arthritis or the fatigue as of yet, but working with my Immunologist we're doing some more tests and research to see if I'm going to need to change my medications. I've started taking Plaquenil again (after many years off of it) and that should start to help with the more debilitating symptoms soon as well.

I'm loving Mickey Trescott's cookbook as a guide! The weekly meal plans are awsome and take so much thinking out of prep and shopping. What a wonderful resource!  I have been surprised on many occasions how good the food is! I can't get enough of the cauliflower 'rice' and am enjoying my mini hamburgers for breakfast every morning.  I have had to adjust portions and sizes for my own consumption levels but otherwise the food is great!  I've even prepared two dinner parties since I've started with the diet and everyone was thrilled with the cooking. Nobody missed grains, gluten, dairy or anything else!

This time around, I'm also not missing gluten at all. It's a relief because my past tries at a gluten-free life saw me consuming tones of rice, corn and potato and nothing with any real nutrients.  I'm going to keep going and am aiming to be fully on the program by the end of the month.  

I'm also learning a lot from this experience. Having any type of diet really amkes you think about food in general... where is it coming from? Do I want to put this in my body? Can I afford to put this in my body? Maybe these are questions everyone should be learning to ask themselves.

PS I don't like smoked herring.

Is the AIP paleo diet for me?

About two years ago my homoeopath suggested I go gluten-free as his MORA machine picked up an intolerance. I had had the slew of tests for Celiac disease repeatedly and they had all come up clear but he had me do a few genetic tests as well and it seems I carry the HLA-DQB1 *03:01, *03:02 markers that show a predisposition to the disease. Clearly, if someone has this sort of predisposition they do what they can to avoid it right?

Well, sometimes they don't. To prove to you how much of an idiot I am I will just tell you what I had for dinner last* night... Yes that's right. It's Italy and I had pasta.

I have gone gluten free on and off in the past few years but I feel like I've been off the diet more than I'm on it. A friend asked me the other day why I don't follow the diet if I know that eating gluten is slowly making me sick (gluten has also been proven a huge trigger for autoimmune diseases) and I tried to explain to her that I feel as if its the same reasons why smokers continue to smoke. Smokers enjoy smoking and I enjoy eating pasta but its deeper than that. Really addicted smokers have a psychological barrier to overcome if they really want to quit. They have to give up their identity and self-image as a 'smoker'.  I will have to give up my self-image as being normal and free to eat what I want.

Maybe it's time? 

Ive been doing research and i think that the reason why i may have come back to gluten in the past was because a gluten-free diet isn't for me. I just ended up eating loads of gluten free pasta and still feeling hungry. I hadn't changed my diet, I had simply removed one ingredient.  It always make me feel deprived cause the flavour wasn't there and I was trying to pretend it was. Eventually I would just cave in and eat an entire pizza.

Perhaps I need something Even more extreme than eliminating gluten to allow my body the rest it needs and to get used to not having that level of energy provided by carbohydrates.  I've become very interested in the autoimmune protocol paleo diet instead of just gluten free... It's the elimination of all grains without substitution coupled with the elimination of all foods that cause inflammation and allergic reactions in the body.  It sounds terrifying, but I'm thinking of giving it a shot.

I'm going to use this article, which you can find on the awsome PaleoMom site, as a guide in this new change and see if it helps me to feel any better. Then when I start to slowly introduce foods back into my system ill be able to feel what they're doing to me. I may even keep a food diary, which I've never done. I'm going to approach avoiding the foods they suggest to avoid the same way I approached quitting smoking myself eleven years ago. In the same way I said to myself 'just don't have a cigarette' ill have to say 'just don't order the pasta'.

Some reasons why I'm hoping the autoimmune protocol paleo diet may work for me:

-cutting out gluten means reducing the risk of having Celiac disease down the line

-avoiding nightshade foods and gluten should reduce swelling in my joints

-PCOS has recently been linked to forms of diabetes and insulin intolerance... carbohydrates  raise blood glucose levels and this diet eliminates all carbs

-research has shown that people with my blood type (0-) are at optimum health following a hunter-gatherers type diet of only meat and vegetables, but no grains

-removing these foods may help with my ulcerative colitis and bloating/pain after eating

-maybe forcing myself to eat more meat will help with my energy and iron levels.

Sounds like a pretty optimistic list!

I bought The Autoimmune Paleo Cookbook by Mickey Trescott online to help me with the new diet. It's in PDF format and so far really nice to look at and explains a lot.

I also bought some paleo-friendly (but not AIP friendly... one step at a time) flaxseed flour and had a really filling lunch by basically just mixing 2 tablespoons up with water, herbs and spices and then cooking it in a frypan with oiliveoil in the exact same way you would cook a scrambled egg.... It looked like a burger (being dark brown in colour) but was very delicious and even Sera loved it! "More flassseeed pleeeeeease!"

*by last night I mean the night before I first wrote this post... several days ago.

autoimmunity - part 4 - fatigue

The ongoing mystery as to how my body works was back to its old tricks this past weekend with a huge flare-up consisting mainly of swelling in my wrists, fingers and knees and more debilitating, severe fatigue.

Lying in bed with the sensation that someone had replaced my skin with those lead vests that you wear to protect your organs during x-rays, I had a lot of time to think about fatigue, energy, sleepiness and wakefulness and to try to remember to be grateful for my good days.

Now that I'm feeling a little better I thought I'd post a bit about it. 

I didn't know what fatigue even was until my sickness.  Sure I had been tired, lazy, wiped-out, exhausted, drowsy, hungover, floored, .lethargic and loads of other versions of tired but never fatigued.  I didn't realise that such a terrifying state of lack of energy even existed. You can be wide awake in your mind but your body, no matter how hard you try, is resisting any form of movement in an active and opposite way.  It's as if gravity suddenly has an 80% stronger pull on you or the ground/chair/bed have become magnetic and your bones and muscles are made up of iron. Then on top of  that there is a strange and foreign energy running up and down inside of your body at a frantic rate keeping your muscles, bones and tendons from doing as their told.

As in my case it can come on slowly, with warning signs like headaches and joint pain and swelling, or all of a sudden, regardless of how much you've slept and without warning. Then when it decides to go it can just vanish, leaving behind confusion, relief and the subtle residue of fear.

If you had seen me yesterday morning at around 8am you would have been shocked at the states was in. I was up, yes, because I had to look after Sera, but moving as slowly as a sloth (who I'm sure knows what fatigue means perfectly). 

It took me over two full minutes to get down the staircase.  If I had to stand I needed to use both hands, placed strategically and pull myself up from a seat. Showering was out of the question because of that crazy energy running around me and my low blood pressure so I just had a coffee and stayed perfectly still unless I had to move. I put on cartoons for the kiddie and didn't feel guilty at all (well, a little bit guilty, but that's how I always am).  When a friend popped by at 9:30 I had to tell her that I couldn't have a coffee with her (after finally making it to answer the door). Then, all of a sudden at 10:30 it was gone! I was better.

And this morning when I woke up I felt fine as well.

I spend a lot of energy trying to find answers to what triggers the fatigue and flare ups and I do my best to try to avoid them, but I have also spent quite a bit of time trying to learn how to accept them and let to of the stress my mind causes mean top of my bad days... I find that when my body is at its very worst, my mind goes off and worries about the future, feels angry that I have this challenge in my life and feels like a failure for not having 'resolved' it by now (though I have been told on many occasions that there is no cure, only treatment). Since I can't control the sickness I can at least try to control how I feel about it and that may make things a little better.

I am grateful today to have energy and vitality to play with my daughter, see a friend and cook a healthy meal for my family tonight. I am grateful to be working on my memory quilt, to be able to continue to do my crafting projects and to be able to work on my short film.  I am grateful that my recent x-rays have resulted in no deterioration to my finger, wrist, ankle or feet joints. 

I am also grateful to be able to be writing this post for you today. I have spent a lot of the past 13 years hiding my sickness from the people around me.  Of course, I don't want to burden anyone with my problems, we all have them, and I'm not throwing myself a pity party, I'm the first to say how lucky I am and have been. But I still think the reason I don't normally share is part of my life with anyone is a combination of shame, fear, denial and anger.  I want everyone to perceive me as strong and the sickness makes me feel weak. I am afraid of being judged, but more so of what the significance of my sickness means to my future and the people around me. I am in denial of the disease (hey! I've already made a step in the right direction, calling it a disease instead of a sickness or illness) and I figure if no one knows that I am struggling with it, it will go away, or won't be true.  And I'm angry.... So so so angry at times. 

Perhaps I can find strength instead by learning how to accept my weaknesses. Perhaps I can be brave while facing my fears. Perhaps I can learn to accept this disease and in doing so live with it in harmony and perhaps, instead of anger I can learn about compassion and gratitude from all of this.  Surely, at the end of this journey I will be changed because of it, perhaps it is my choice as to how.

My joints are still swollen today, and I take that as one of the warning signs, so I'm going easy on myself in the next few days. I'm hoping that the fatigue won't return again for some time. Wish me luck!

For more of my posts on autoimmunity click here.

autoimmunity - part 3

advanced thrombotic microangiopathy: for something that almost killed me its rather beautiful!

I never intended for this to be a blog about medical conditions and I'm sorry for all of you faithful readers who come to see my crafting posts who have to put up with an occasional downer as well.

I didn't even expect to have to write a post on autoimmunity again for a little while. I know you're all dying to hear more about homeopathy and gluten free from my last post of the series but something unexpected came up this Wednesday which I think can help teach a super important, and in my case, life saving lesson to even the healthiest of my readers.

Here's the story:  I have always suffered from PCOS (polycistic ovaries syndrome) and have managed my symptoms successfully with the regular old birth control pill. There's much discussion as to the cause of PCOS and whether or not it's related to autoimmunity, but no one knows for sure. Regardless, since I've been taking the pill for about 20 years now (with a few brakes including a large one to allow for my little princess) for me it seemed something so natural, essential (for the PCOS symptoms) and irrelevant almost to the point of not mentioning it to doctors when I give my medical history.

When I was pregnant, I had a few extra tests done because of my autoimmunity to make sure that the pregnancy wouldn't be at risk for some as-ofyet unknown factors. I had some specific tests done which my immunologist assured me 'In your case shouldn't come back positive', but a few did... specifically the anticardiolipid antibodies and the lupus anticoagulant, which put together,  in most cases mean Antiphospholipid Syndrome.  Enough large words and links to Wikipedia.... In normal lingo that means my blood is thick and sticky and is very dangerous in pregnancy for miscarriage, stillbirths or lots of other nasty things that you don't want to hear when you're pregnant. I ran straight back to the doc with the results and was put on baby aspirin for the rest of the pregnancy with my levels being monitored closely and regular ultrasounds to make sure the baby was ok.  4 weeks before my due date I had to stop taking the aspirin (which increases the risk of hemorrhage during delivery) and in fact, Sera was born almost 2 weeks early and quite underweight for her gestational age.

I took my new baby home and after 40 days of injecting blood thinners to make sure that I didn't have strange clotting in my uterus never thought about Antiphospholipid Syndrome, or APS, again.

Until Wednesday; when, by chance I mentioned to my immunologist that I had had a abdominal ultrasound (for more fun autoimmune problems) and that all the technician had found was my PCOS which 'I already knew I had anyways and am controlling with the birth control pill' - I said.

I have never seen a doctor turn white. Especially not my doc, who I've known for five years now and who I pass most appointments joking around with.  He started leafing through my entire folder and repeating 'but I didn't know you were taking the pill... did I know? No, I didn't know... did I?'

Well, no he didn't... at least he didn't know I had restarted taking the pill about 4 months after Sera was born when the PCOS started to creep up again.  My gynaecologist prescribed it and since I didn't know much about Antiphospholipid Syndrome (nor do most people or doctors) didn't mention that to the gyno either... I didn't think it was something I had to mention.  I had always taking the pill before with no problems.

But it turns out there is a problem, a very serious one actually.  APS and oral contraceptives don't play nice together at all apparently... they both thicken the blood and mixed can cause significant problems such as deep vein thrombosis, stroke, heart attack, and pumonary embolism (what fun to hear... imagine me now in the doc's office and the colour of my face!)  The immunologist ran upstairs to the Thrombosis clinique with my data and came back with a game-plan:  stop taking the pill immediately, get these and tese and these blood tests (13 samples!) and when you have the results we'll figure out what to do about the PCOS and if you need more treatment for the APS.

Dear readers,  I have always had APS (or at least as long as y other autoimmune problems) so we're talking about roughly 13-20 years of walking around with a super-high risk of the above-mentioned killers and not knowing about it.  I'm having a hard time getting my mind around it, but am grateful and thankful to now know. I had been considering postponing the appointment on Wednesday but am so happy I went. The simple conversation with my doc may have saved my life and I'm lucky to have had it.

Even after stopping the pill I will have to learn more about APS and how to scan myself for warning signs of the potential problems related to it.  I noticed a bruise on my leg this morning which I would have normally not thought twice about, but will be keeping a close eye on it (although I think that it would be too coincidentaly to have a DVT 2 days after learning that you have a syndrome that created DVTs... there would have to be some strange powers at work).

The biggest lesson I learnt from the experience is that you should tell your doctor EVERYTHING... even the things you think are not important, even the things that you think that you already told them. 

not me talking with not my doctor

Had I told my immunologist back in 2011 that I was thinking of taking the pill again or had started to take it then he would have told me not to and that I couldn't and had I told my gynaecologist that I had APS (having understood its' significance) there's no way he would have prescribed me the pill... we would have had to find a new way to control the PCOS.  For as much as I am an expert on my health and have learnt to be in these past 13 years, I'm not a full expert and will need to learn to collaborate more with my docs and to live with a new full-disclosure at the risk of being banal policy.  For in as many times as I've filled out a form and they've asked what medications I take and I've written 'the contraceptive pill' and they're told me it's irrelevant, in my case it was VERY relevant this info and I had erroneously let myself be convinced otherwise.

The second biggest lesson I learnt is that when you are diagnosed with something, or prescribed something you need to go and find out everything you can about that illness or medication, then you have to make sure you ask questions... over and over.  Sometimes doctors don't know what they're doing.

I'm going to have to find out if there are alternatives which don't cause thrombosis that can help with my PCOS.  I'm not looking forward to the symptoms coming back and the pain that goes with them.  The thrombosis clinic mentioned one drug that may work and has fewer risks but I haven't looked into it yet as I have to wait for my blood results on the 19th.  I'm a bit worried about what the future holds for me with regards to that but as I mentioned before there were other times I lived with the symptoms and I'm sure I can do it again.

As all of my medical posts, this was a long and heavy one, but I'm sure that you understand it's been a strange and heavy few days for me.  If anyone out there is going through something similar I'd love to exchange ideas or tell you a bit more about my experiences.

Thanks for reading!

autoimmunity - part 2

This is part two of my personal story on autoimmune disease/disorders. To read part one please click here.

I was really nervous during the drive to Marina di Massa to visit the homoeopath. I don't know what I was expecting, but it certainly wasn't what I found when we arrived.

The office was quite small with a waiting room with 5 chairs and a table with magazines. We were greeted by a very kind and happy-energetic receptionist and told to wait a few minutes. I was then directed into the doctor's office and asked to sit in a wooden director's chair and to take off all my jewellery, socks and shoes.

The doctor was reserved and quiet, kept pretty much to himself and didn't explain much. The MORA machine, which too me looked like an electroshock device from the 50's sat on the table in front of him. He wet my hand (I still don't know what with... probably just plain water), placed metal plates under my feet, handed me a metal rod connected to the machine, then took my other hand and started to poke it with another rod, this one ending in a dulled metal point, also connected to the machine.

The MORA machine was created in the 1970's by German physician Dr. Franz Morell and electronics engineer Mr. Erich Rasche t measure the electromagnetic component of the body. All substances, whether living or non-living, emit electromagnetic frequencies based on the amount and rotational speed of their atoms. Every bio-chemical process in a human or animal's body are controlled by the “information” carried by electromagnetic oscillations. The MORA machine is able to read this information as electrical frequencies and find any imbalances in an individuals electromagnetic oscillations.  Then with the help of traditional acupuncture points (although without any actual needles or breakage of skin) and homoeopathic remedies, can help to rebalanced these problems.

So the machine finds your bodies' issues and then suggests cures based upon components that will balance these electromagnetic oscillations.

My appointment lasted 2 hours, the first hour and an half connecting the machine to each of my accupuncture spots in my hands and feet correlating to my major organs.  In my case the machine picked up 3 viruses my body was combating: Streptoccocus, Epstein-Barr (aka Mononucleosis), and Campillobacter (Helicobacter-Pylori). It registered several common allergies including pollen, grass and dust as wel as gluten, which was quite shocking and upsetting as the doc told me I'd have to cut out the pasta, bread and grains that I've gotten accustomed to eating since living in Italy.
The machine seemed to pick up on things I hadn't even mentioned to the doctor, such as my policyctic ovaries and frequent bladder infections. It revealed several zones of degeneration and inflammation in my body: bladder, ovaries, stomach, intestine, joints and articulations, eyes. The doc said my arthritis and fatigue and pretty much all of my symptoms would be due to my immune system not knowing, or having forgotten, how to deal with those three very common viruses.  The last half hour of the appointment was spent more or less searching for the right homeopatic remedies which would balance the oscillations. If the machine's dial read 50% the homeopathic remedy would work.

I was sent home with a shopping list of homoeopathic remedies to order from Switzerland.

Now, let me mention that there is a LOT of talk on the internet about how MORA practitioners are fraudsters and how the machine doesn't work and blah blah blah... I'm a sceptic at heart and definitely felt ridiculous sitting in the chair holding the probes, but no more so than when I have had countless blood tests and x-rays and side effects to 'modern' medicinal practises and drug treatments.... should I now go and claim that my own rheumatologists and immunologists have been fraudsters and that steroids, cortisone and antibiotics don't work?

More on my life with homeopathy, Marina di Massa and going Gluten free in a future post.
Images from http://www.moranoosa.com/

autoimmunity - part1

For a very long time I followed the route of steroids and antibiotics for my own chronic health conditions moon-face for a year while taking cortisone based steroids for my arthritis but still had the arthritis.  I was lucky enough to change doctors in 2006 and what followed was a period of 5 years where I took penicillin for five days a month to combat and circumvent my body's exaggerated autoimmune reaction to the streptococcus virus.  Anytime I mentioned taking antibiotics on such a regular basis, for such a long time, people seemed very concerned and asked how the rest of my system was handing that. Well, it was a concern that of course I had as well... but at least I no longer got locked in rooms because I couldn't grip and turn a doorknob. Suppressing the strep virus worked and my hands didn't swell.  I was happy to remain a long-term antibiotic treatment patient, for as long as it worked and I could live a normal life without steroids, of which the potential side-effects were worse (and in my case, which didn't work anyhow).

Then in 2010 I got pregnant and my immunologist and I decided to suspend the antibiotics and 'see what happens' for a few months... in the interest of the foetus of course I was happy to have joint pain, fatigue and swelling... isn't that what pregnancy is all about for a healthy woman as well?

When you're pregnant the maternal immune system is modified in order to achieve immune tolerance toward paternal antigen expressed on foetal cells.These modifications, which occur both at the
foeto-maternal interface and in the systemic circulation, are driven by oestrogen and progesterone
whose blood concentrations increase during pregnancy.  This means that your immune system, triggered by the oestrogen and progesterone, takes a chilled out back seat during pregnancy in order to let the little baby survive in the womb.  Otherwise, half of the baby would be recognised as foreign to the mother (because it caries the DNA and genetic mapping of the father) and destroyed.  If this system doesn't work in fact, miscarriage is inevitable... as is the case in several autoimmune diseased where the natural immunosuppressant doesn't kick in in time (this may explain also why so many autoimmune pathologies have trouble 'getting pregnant' in the first place...  the embryo is rejected by the over-active system before it ever had a chance to register any hCG in the urine or blood).

In my case, pregnancy turned me into a healthy woman for the first time in 10 years. I had no more joint pain or swelling, was not taking any medication to control my symptoms and had a wonderful pregnancy with little discomfort, fatigue or dismay.  Yay for a suppressed immune system!

After Sera was born, it was a different story.  My joint swelling and pain came back with a vengeance in order to make up for my nine month holiday.... and what's worse, going back on the antibiotics didn't help at all.  My A-Streptosilinico levels were at an all-time high and the stress of a new baby, sleepless nights, breast-feeding and back pain didn't help at all.... what was a girl to do? My immunologist, with an apologetic face told me that I'd have to start injecting a stronger form of antibiotics into my buttocks on a monthly basis just to feel normal. There I was, nostalgic for the carefree, easy days of opening pickle jars and bending my fingers to make a fist that I had just experienced during pregnancy and he was telling me my disease had progressed... depression wasn't far away.

I asked about acupuncture, hypnotherapy, homoeopathy, osteopathy, massage therapy, changing diets, drinking more water, hormone therapy (hey, if it worked when I was pregnant)... friends even joked that I should become a surrogate, but after a traumatic birth experience, that wasn't in the cards.  I looked into everything and anything and the doctors' answers were always that it 'couldn't hurt to try'... but they weren't confirming anything.

When Sera was 6 months old, on a friend's passionate recommendation, we packed up the car and drove three hours to a doctor's appointment with a homoeopath who uses the MORA machine in Marina di Massa and I haven't taking traditional medicine since.

More on MORA, Marina di Massa and homoeopathy in a future post.