Troubled by my choices

What's is troubling you today? Well, if it is your Hidradenitis Suppurativa, you are not alone. I have been managing my Hs through diet for the past 11 months. It has been going really well. Until now.  

Mostly I have avoided having any foods or drinks that I know kick my HS off – not too much fruit, no gluten, only raw dairy – no milk, limited night shades and so it goes on.  

Remember how I told you I was just about resisting temptation? Well, along came Christmas. 

I fell off the wagon. I ate three or four homemade mince pies. I ate some homemade tiramisu. I ate some homemade Eton mess. I ate some homemade Panna cotta. I know, I know, you get it. Lots of puddings. That's not all. I drank some Baileys. I had some Cadbury's chocolate. Do you know what? I thoroughly enjoyed all of it!  

So now I am suffering. I have had recurring sores and old tracts have opened up, causing me to have pain when I walk. Along came the familiar pattern of having to change dressings whenever I had to use the bathroom. Not only that, but I have had two more spots come up – both in completely new sites, where I have never had HS before. I have tried to be positive; however, being grateful for the amazing technology of the dressings I use and the fact I get them all free can only carry me so far. I am grateful, but ai also want to cry. Is it fair that I can't enjoy a few desserts over Christmas? It wasn't even like I had too much!  

I know I have the option to go back to the antibiotics. It gives me comfort that if I really cannot get it back under control using my diet (studies show that willpower is finite!), I have a Plan B. Part of me feels like it is selfish to try and manage the disease using diet as it takes so much longer to heal. I feel sad that my pain and grumpiness affects my family, when it could so easily be rectified if I just took the drugs. We could all be happy. Temporarily. 

That said, the results I have seen from eating a balanced, but carefully tailored way of eating have allowed me to live a pain-free life for nearly a year, with no side-effects, no risk of immunity to antibiotics, no need to constantly balance the good bacteria in my body with probiotics. Now, if I can just get there again…. 

So what is next? Well, we will see. I give my body, my mind and my willpower another couple of weeks. If the pain starts to subside and the wounds begin to heal, I will hold off on the antibiotics. If the pain continues and my quality of life continues to diminish, there will be a (reluctant) call to the Dermatologist and I will take the medication that gave me life back in 2012.  

I feel I am able to make choices about how to manage my disease and just for today, that gives me the power to say no to a croissant!  

Whatever your choices are today, remember, you are trying your best – be kind to yourself. 

 

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Winter is not my friend!

It's that time of year again. It is bitterly cold and miserable and I find myself wondering why it is we are not given time to hibernate? All summer and autumn, I have been happily eating beautiful salads, smothered in homemade salad dressing; gorging on sweet potato chips, courgettes and the odd grass-fed steak, when bam! Winter hit. Suddenly it's all about the comfort foods, the carbs, the sugar, the crumbly texture of cake, pie, mash and gravy, hot croissants, warm toasted baguettes, hot chocolate with marshmallows. Everywhere I look I am greeted with invitations to try the latest spiced latte, topped with cream. 

But I am resisting. Some days it is torture, but I am hanging on in there!

I found remission from my debilitating autoimmune disease not so long ago and I liked it. So the mantras continue….

Today, I will wait until I reach work and I will make a fresh, organic ground coffee in my Bodum caftière cup (which is fabulous by the way!). I will continue to buy sweet potatoes, but will indulge in the richness of butternut squash, roasted with lashings of duck fat (and coconut oil); I will rev up my slow cooker and get stuck back into the naturally delicious depth of flavours in homemade soups; I will  focus on how far my life has improved by the huge changes I have adapted to in the past three years…..

There are only 7 more sleeps until the days start getting longer. Light and energy will begin to warm our souls once more. Be kind to yourself – the worst is nearly over :)

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Product review – Salt Of The Earth Natural Deodorant Spray by Crystal Spring

Like many of you, I have never found a convenient or good alternative to a standard deodorant. I have tried many of the 'natural' brands out there and none of them could stand the test of time. Even though I am reluctant to use harsh chemicals, I am also reluctant to subject my fellow human beings to a day's worth of body odour, so I always reverted back to a standard deodorant.

Until now.

Enter Salt Of The Earth Natural Deodorant Unscented award-winning spray by Crystal Spring. It comes in a bottle pump spray format and against all odds, it actually does what it says on the tin! 

As you may know, I have been working in a fast food restaurant and I do not stop running around from the moment I get there until the moment I leave, so it is really important to me to have a deodorant that lasts. I started using Salt Of The Earth Spray on my days off, but was quickly confident enough to use it on work days. I was amazed that it lasted all day, even on days when I worked a full 10 hours! I love the fact that there are no artificial ingredients and I am not left with that caked on feel I get when using standard deodorants. 

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Functional and virtuous – who could ask for more?!

My husband suffers from skin irritation and we had never found a deodorant that worked for him, without causing itching, redness and sore underarms. He started using Salt Of The Earth Spray in April and hasn't looked back! He too, is amazed at it's durability considering it contains no aluminium nor alcohol. He went away for a business trip last week and left the spray here. Upon his return the soreness had returned under his arms and it was a little raw. A week later and back to using Salt of The Earth Spray daily, his underarms are healed and back to normal.

So, if you have been looking for a natural deodorant solution, you have found it. Suitable for vegans, it leaves no stains or marks, it is odourless and above all it is effective. We are currently halfway through a 100 ml bottle, which we have had since April, thus one bottle should last at the very least, three months.

Buy Salt Of The Earth Spray  – I cannot recommend this product highly enough!

This product retails from £3.84 from Crystal Spring in the UK (plus £3 p&P) where you will find the full range of Crystal Spring products available and get free postage in the United Kingdom AND Europe when you spend over £40. Worldwide shipping is also offered at £10.

Alternatively, it is available on amazon.co.uk or amazon.com (affiliate links)

I received this product for free to write a review, however I have found this product to be awesome enough that I will be buying the next one!

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No baguettes or bananas.

Gluten-free living is currently proving to be the best for me. When I say gluten-free is best I am talking purely from a health point of view. Obviously there is nothing remotely amazing about being gluten-free on a practical level, seeing as a) I'm a human who lives around normal people and 2) I live in France where it is pretty much compulsory to eat amazing baguettes, croissants and patisseries. Still, seeing as my old scar-line HS lump appears to have diminished to nearly nothing – flatter than when I was on antibiotics (when I was still eating gluten intermittently), my gluten-free efforts are reaping some good results. I have also been avoiding nightshades and egg whites. Wine and "Paleo" baking? Well,they're still in there. Not often, but I'm definitely not following an AIP diet at the moment.

I had a little bit of a food disaster a few weeks ago. I had been eating too much fruit and I knew I needed to cut down. Then one night, after having spent a happy evening snacking on bananas and cashews, I was physically sick. Whilst camping. On an inflatable mattress. Not my finest hour, I must say. With no Google to hand, I assumed it was the cashews and vowed not to touch them. Later that day, I snacked on a few more bananas and lets just say the results weren't pretty.

Back home and in the land of Google and FB, I found that having an allergy to bananas seemed like a fairly commonplace affair, which sent my Inner Hypcohcondriac into overdrive. What would I do without bananas?! How would I live without their velvety, comforting, squishy goodness?? A little dramatic outburst about my new and terrible living conditions on FB saw a lovely positive response and some advice that I'd probably over done it on the whole potassium front. Well, I had heard that if you eat something like 18 bananas a day for 9 days, on the 10 day you would die (this is based on pure teenage hearsay and I have never once even Googled this "fact"). As I was at least 13 bananas a day away from this, I didn't even think that it could be potassium related. A little word from a friend and it all made sense (thanks, Teri!). She told me that I may. Have reacted to too much potassium from the bananas and that cashews were high in potassium, too. The relief I felt, knowing that it might not be a lifelong banana allergy, was immense! My Inner Hypochondriac retreated all appeased and satisfied that life was going to continue to be worth living after all.

So whilst baguettes and bananas are off the menu for the foreseeable future, life goes on…..

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Working my way back to AIP. Again

It's been well over a month since I finished my antis and I have a few flares on my unmentionables. They are at the front, so don't rub when I walk and I've actually learnt to accept them. I realised that just because I am having a flare, it does not have to mean I am a failure or that it is game over. It is just part of my life and if it pops up in an area that doesn't cause me too much grief, I'm happy with that!

I really am trying to be good. I had been writing a food diary religiously and I do plan to get back to my nutritionist doctor. I have ordered more Bactivit and more Permeaprotect and have been taking it all as advised, along with cod liver oil. Do these things work? Who knows?! 

Going back to AIP eating is a tough call. The best part is that eating mostly paleo/AIP for the past two years means that jumping back in the saddle is not too scary, although I can't say I'm 100% back on board just yet. However, I rarely eat processed foods, so that's no biggy. I never drink any sodas or fruit juice, so nothing to miss there. I have cut out wine for the past two weeks – I didn't even drink when we went to visit some vineyards. It doesn't take as much effort to say no anymore and I guess coming to terms with the longevity of the disease has stopped me being so emotional about having to be denied certain foods. That's not to say I've got it cracked, but it's just that if I look at where I was a year ago, it really has gotten easier and easier.

We currently have a freezer full of bones, carrot peels/ends and celery just waiting for my stockpile of stock to run low. We have a slow cooker ready to make the stock if it does get low. We have pork belly curing in the fridge ready to make the next batch of bacon. We have a bag full of measured out ground spiced pork sausage for breakfast. I have sliced onions and frozen them in weeks worth of portions, ready to use and peeled and halved all the garlic I need for the week. I have peeled and topped and tailed carrots in a tupperware in the fridge – easy for a snack or to use in my recipes.

We do all of these things as a family, which takes a lot of the effort out of them and even if I am in the kitchen prepping food, Mr B will be helping by entertaining Baby B or sorting out another meal and Ty will be folding washing or unloading the dishwasher. There is definitely about having a complete group effort that takes the pressure off and makes the whole thing much easier.

I am still battling with a bit of a sugar dragon. Tonight I caved and as I have a whole bag of beautifully ripe avocados, I indulged myself and made an avocado chocolate dessert using 100% unsweetened cocoa powder, organic honey, coconut oil and of course avocados all thrown in a blender and whipped up into chocolatey heaven. No reactions yet and even though it was a little avocadoey, I really could see how avocados can be used as a creamy substitute in puddings. I reckon if there had been another stronger flavour in there (mint perhaps?), I really would not have tasted the avocado at all. In any case, it was delicious and filling and not forgetting that if I was eating like any normal person, I would've just made one of the healthiest chocolate mousses out there!

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Open minds.

I have always had a deep admiration for Mr B. He has a beautiful, lasting smile and a very relaxed aura (ok, this may have changed a little due to the many battles we seem to always be fighting). He takes compliments well and has absolutely no need for external affirmation – qualities I would just love to possess. Another thing that he does that I admire, is make friends with people very easily and invite them for tea, dinner, drinks etc. I'm not sure if it is just me, but I struggle to take these first steps with people I barely know.

 

His latter quality has been a Godsend for us, especially when we were in Louisiana. He would get chatting to people at work, or through business connections and next thing I knew, we would be having a BBQ with their whole family, or spending the afternoon at their summer camp. It really was a saving grace.

 

Here in France, he has not stopped. At a recent visit to a new home exhibition, we were invited to discuss our financial situation over a glass of champagne at a Financial Advisor stall. Child-free and in no hurry, we stopped for the drink and allowed the sales pitch to start. What happened next was quite unexpected. The advisor, a French man in his forties, was fascinated by our travels and experiences and abandoned his sales pitch right away. We chatted and listened to each other's stories of travel and ended by exchanging numbers. We left the exhibition with lots of ideas for our build and a new friend.

 

A few months later and we had exchanged visits with Mr Financial Advisor and his family. They have a beautiful apartment in Arcachon and it was nice to take a trip out there. We learnt that their eldest son had autism and when they last came to visit, his wife explained that they had been to see a different type of doctor for their son. The doctor had prescribed them probiotics and had started to advise them on how to use diet to help their son. She said that they had eliminated gluten and dairy on his advice and their little boy had since been sleeping for the whole night for the first time in years, his behaviour also improving immensely. Of course, I was immediately animated by the whole conversation. It's not that you ever want to here of anyone going through a tough time or suffering any kind of condition or disease, but the moment you meet somebody who is embarking on the same journey you are, well, it's hard not to get excited.

 

She talked about how it was going so far and I really did sympathise with her plight – eating Paleo is one thing, but trying to get your 9 year old, to eat Paleo is something else! We talked about different recipes, ideas and ingredients and it felt good to speak to somebody who had seen results from eating this way. She gave me the name of the doctor and I gave her the name of the diet. She had not heard of Paleo and I told her I would do a bit of research on some French sites for her.

 

Fast-forward two weeks and I am at home with a new prescription for probiotics and glutamine and some renewed hope. I visited Dr Bruno Geoffray, an osteopath doctor by trade, but one who had diversified into micro-nutrition. He was completely engaged when I was explaining my condition and spoke to me about healing my leaky gut. Bizarrely, I almost felt sceptical – I mean, doctors are supposed to be telling us that leaky gut is a thing of myth and a prescription of antibiotics would be my next step to health. To hear a doctor tell me that we were going to get me better by using diet was almost too good to be true.

 

So, with new friends made and at last, some support from a professional, I am newly inspired. Fingers crossed :)

 

 

 

 

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Budgeting – is it all about priorities?

I see a lot of comments about budgeting: how can I eat Paleo for less? How can I afford grass-fed meat? I used to think I had some good tips, but now I am not so sure…..

When I go to the butcher every week, I spend €50 or more. Top that with the €50 -100 spent on fruit and veg and perhaps another €50-€60 for standard dry store foodstuffs/cleaning products/baby nappies at the supermarket and we’re probably looking at a good €200 a week. I think we budget fairly well, but talking to a close friend of mine, who budgets £200 (about €240) a month for food with only an extra £15-20 a week for fresh fruit and veg, it got me thinking. Is it really possible for me to apply my budgeting tips to somebody else’s life, realistically?

My own life is also an example in point….

In 2008, I was a full-time Probation Officer, earning just over £28,000 a year and living in hideous debt. I had absolutely no clue why or how I was in the red every month. I did spreadsheets, lists, made plans and even gave myself a weekly cash allowance. Nothing worked. I had literally gone from living on benefits as a single mum for three years, to earning 4 times as much, but I was still skint. I had started to earn a grown up wage, yet I could not fathom how to budget. I stayed like this until I gave up my job in 2011.

Whilst my spending power hadn’t always been enormous, my terrible spending habits had. For years, I suffered terribly with depression. I would spend money like it was endless and a diagnosis of bipolar in 2009 allowed me to label my spending as “out of my control”. The truth was it was just “out of control”. I would shop smartly, spending hours scouring catalogue sales online, buying all my Christmas cards in the January sales and buying key pieces of clothing that I would wear for years. However, this was coupled with days of frivolity, drinks out with friends; weeks of depression, which I desperately tried to alleviate with purchases here and there; hundreds of pounds spent on my daughter for her birthday and Christmas, trying to compensate for the fact that I was too depressed to get off my backside and entertain her for free. This and my self-righteous sense of entitlement to the newest mobile phone on the market every year, Sky TV and well, anything that anyone else had, left me thousands of pounds in the red.

Fast forward to February 2011. I had married Mr B, I was 4 months pregnant and I had handed my notice in at work. I was no longer financially independent. I could no longer justify buying that new little gadget or another lip-gloss. There was no spending in the sales, in case there was a bargain I would never ever see again. No. I was in freaking bizarre territory and there was no fighting it. My lovely husband was now supporting us as a family. No longer Miss Independent, I was going to have to consult with another person and be made accountable about every single purchase I made. For the first time since I started earning money aged 15, I actually had to stop and think before I flexed the plastic. Did I need it or did I just want it? Could it wait until tomorrow? Until next week? Until next payday? Would I manage without it? Would Mr B consider spending the equivalent on himself? WWJD( What would Jesus do)? Ok, maybe not WWJD.

When I met Mr B, it seemed like he spent a fortune on food. Good, wholesome food, which he would spend hours cooking. I winced as he placed organic produce into the shopping basket, up to three or four times the price I would’ve paid for my usual groceries. Before we got together, I had scrimped and bought frozen, processed food for years. Living on pasta and beans was the norm. I refused to buy battery farmed chicken and was reluctant to buy cheap meat. As such, my diet was largely vegetarian, but not healthy vegetarian. I mean meat substitute, Quorn, noodles, canned baked beans, canned tomatoes – anything in a tin really. I “didn’t have time” to cut vegetables and certainly didn’t have the motivation.

Looking back now, I think I understand where I was going wrong. I’m not sure that back then, as a depressed, single mum, that I was ever in any hope of changing it though. So what has changed? I have a supportive husband, whose catch phrase is “next payday” and who is super motivated to save money. I have an autoimmune disease, which is massively helped by eating “clean”. I have re-educated myself on what a healthy diet is and am at my slimmest ever weight since I was a teen. I live across the road from a greengrocer and a butcher, where most produce is locally sourced.

We are also fortunate to be living under a Socialist Government, where medical is free. All my HS treatments and prescriptions are free – is it even possible to put a figure on how much we save on medical?? It used to cost us $1000 per month for health insurance, reimbursed at 80% in Louisiana. Here it is less than €70 per month and reimbursed at 100% in most cases (dental and optical, too) We are healthily reimbursed for childcare costs incurred by us both working. Mr B also gets “cheques restaurant”, cheques provided by his work which give us an extra 100 euro a month to spend on food in supermarkets or the butchers. We are building a new house here in France, helped financially by Government subsidised loans and building initiatives. If I don’t get my haircut more than twice this year, I’ll be able to buy a fig tree when we finally move in.

We cut costs in so many places…. We are living in a two-bed 75 m2 flat (807 square feet), whilst we save for the build. The kitchen was not equipped and as we are also saving to buy a kitchen, we cook on a two-hob Campingaz stove, attached to a gas bottle on our kitchen side. We rarely buy clothes for ourselves and when we do, they’re in the sales. The kids get a minimal amount of presents (from us) for Christmas and birthdays. Instead they have loads of time with us, out for walks in the countryside, at the seaside, swimming in the lake, cooking, playing games and watching movies at home. We very rarely eat out and most takeouts are replaced by a trusty tin of ‘confit de canard’ (just local duck and duck fat), ready to eat in under 20 minutes with minimal effort and maximum flavour. We don’t go to concerts, festivals, or anywhere that costs anything. We were so fortunate to go to so many festivals in the UK for years that we try to just be thankful for that!

Mr B has a basic work phone and I have an old mobile phone with a phone tariff of 2 euro a month (phone calls only). I have no roaming Internet and I don’t really miss it. Who needs the ability to Tweet stuff in the moment anyway – surely it’s better to wait until you are back in the land of Wifi, so you’ve had time to consider whether it should be public? And if I really, really need to Google something up, I’ll remember it when I’m back home.

Our list of cutbacks is endless, but they are cuts that suit us here in France. When I tell my sister that she can save money too, by wearing the same coat she has had for the past 2 years, she wrinkles her nose. When my cousin started Uni, she asked me for ways to save – I told her not to buy coffee or magazines when she was out, but just read stuff on the Net instead and drink at home. She told me that was just “tight”. Perhaps it is. For some people my version of budgeting is just not viable. Is it even possible to compare myself to two other people living completely different lives to my own? I can’t even imagine taking my own advice I if I lived back home in the UK. Style would hold more importance for me, as I would be socialising more with friends and would be likely to bump into people I knew. I would use my phone more, so an old phone with limited calling credit would be out of the question. I would be tempted by the constant sales (they are only on twice a year in France) and Red Hot Chilli Peppers playing at the Isle of Wight Festival?? That’s 300 quid gone straight away!

So when I hear people ask if there are any tips for spending less on good food, I am afraid that my answers may not be relevant. Sure, shopping around is best, using everything you have in the fridge to make leftovers, being creative, filling up on vegetables and many other tips are all out there on the Net. Google them up. However, as a family who spend 800 Euro a month on food, who has limited fashion sense and a bird's nest of hair, I may not be best placed to give you any advice.

All I know is, if I can’t Tweet a selfie of me and my besties drinking Mojitos with the Chilli’s playing in the background, I have just got to be grateful for the good food in my belly and the dream kitchen I’ll be cooking in next year!

 

 

 

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Paleo, depression and being God-damned hangry all the time.

Right, I've had enough. Enough of being hangry (hungry+angry), enough of being permenantly hungry and enough of feeling tired and gru-u-mpy. I've binged, gorged, eaten sugar, wheat – everything really and now I've had enough. I'm starting the AIP again.

I am super excited and as motivated as a Christmas elf in December! 

All I need is a star chart and I'm good to go!

So what's changed? Well, I feel prepared. Not just physically, (although yes, I have bought a slow cooker and made chicken stock and beef stock, bought Michelle Tam's Nom Nom Paleo, Food for Humans recipe book (which although is not exactly AIP, is just freaking awesome all the same!) and written lists and posters, but also mentally.

When I first started the AIP last time, I was still a bit of a novice and I had under-estimated the longevity of the process. I thought I could do it in 60 days and, voila, I'd be cured! Not so. Unfortunately this is an experimental process. So far I haven't acheived my final goal of getting the HS under total control, but it has vastly improved and, boy, have I seen some other amazing results in my life! So even if it doesn't cure my HS, it is a journey well worth taking and here's why….

I was diagnosed with bipolar disorder in 2009 after at least 16 years of suffering from depression, agoraphobia, seasonal affective disorder and hideous mood swings. I was irrational, hangry ALL the time and suffered at least two breakdowns. Life was miserable. Sunshine walked into my life in early 2009 when I fell in love with my husband, Mr B. He helped me to see the good in myself and had a Mary Poppin's bag of support (God knows where he learnt to dole out love and patience like that, but if I could bottle and sell him to sad women with low self-esteem I'd definitely be on Forbes' list). Needless to say, my depression improved. A lot. I stopped taking medication nearly a year after meeting him and I was slowly getting there. In the meantime, I suffered a huge HS boil on my bikini line down in my groin (at this time I was yet to be diagnosed with HS), and had Incision and Drainage (I&D) surgery. Despite not being able to walk and the wound becoming infected, Mr B cleaned the wound daily and looked after me. My depression threatened every now and then and I was still a whopping 12 stone /76 kg/168lbs, having ballooned after taking mood stabilisers.

Gradually I felt better. I exercised more – up to four times a week in my lunch break –  and I lost some weight. My mood swings were still pretty bad and if Mr B ever went away and left me for a few days, my coping abilities were limited. In short, he was my live-in counsellor and without him I was still a bit of a wreck.

Fast-forward past the eloping, new baby, emmigrating (twice), settling into our new homeland and eating a mostly-paleo diet from June 2012. I feel great! Sure I get down from time to time – especially fighting this awful disease amongst other life battles – but I'm talking overall, life-coping, getting-washed-and-dressed, general well-being. Life is just not the same terrifying, empty place anymore. There has been a dramatic shift for the better. When eating clean, I no longer crave sugar. I have ZERO energy crashes during the day. I can cope with a bit less sleep. I can go hours without food and not even think about being hungry. I lose weight. My skin is amazing. As for my depression – I can't even believe that I had it, it's been so long! Everything is just a whole lot better. When Mr B goes away now, I don't panic at all. I miss him, but I can still manage to do stuff without him – something I really struggled with before.

So, that's why I'm back here. My mood crashes have been horrible, I've found the childrens' behaviour a lot harder to cope with and I have been craving carbs again – sometimes eating so much that I feel sick. My skin had been awful and I have gained at least 7lbs. I am tired and am starting to dread not having enough sleep. Since starting the antibiotics, I got lazy again. I knew it would clear my HS up and I could sneak in the odd pain-au-chocolat here and there without suffering too bad, so that's what started to happen. My Mum sent some Cadbury's Roses over to us at Christmas and I'm ashamed to say I ate those, too.

Last November, I dipped out of the HS community online, largely because I felt like I would be contributing nothing of value. I had written all about my antibiotic experience last time and this time it didn't seem much different. I always feel bit of a fraud taking medication, when I'm such an advocate for doing it all naturally, but I'm not a die-hard hippy and I trust that the medical profession do have a lot of solutions, even if they don't suit my holistic lifestyle choices. That's also when I started eating a bit poorly again. Not out and out eating processed food all the time, but as well as enjoying French patisseries, the odd takeaway snuck in and dark chocolate became my evening pleasure once more.

Getting back on the wagon is so much easier this time. I don't have to worry about what I'll do if there's no salad AIP dressing (I eat my salad mostly nature nowadays). I don't stress if I'm being invited anywhere with food – I just eat a shed load before I go out and politely turn all their processed stuff down. Most of all I look forward to feeling absolutely effing fantastic and looking pretty darn good too, because sometimes, you can just live off the compliments you are thrown all day long 😉 Mr B has stopped taking sugar in his tea and coffee and is slowly heading towards a full-paleo existence, which is making it all seem so much more natural now, too.

With the antis working their magic, my HS has cleared up and I'm in remission. I am so happy and relieved, but I need to start eating clean again. Until last week, I was reluctant to start preparing for the reality of when the antibiotics end. Part of me wants to be a good patient and dutifully agree with my dermatologist that once the antis fail, TNF/immunosuppressant therapy is the way forward, whilst the other part of me is screaming "No freaking way! Are you out of your mind Mr Doctor??!!" 

D-day is coming mid-February, when the prescription ends and I have a date with my good-looking, yet horribly ignorant and patronising dermatologist and I have decided to get my house in order.

Today, I have got a prescription to have blood tests done, refused to take umbrage at my GPs insistence that I'll be a deficient wreck in no time, am no longer scared about how I'll eat AIP everyday at work (you do know I work at McDonald's, right??) and have stocked up with lots of lovely vegetables. I have got back in touch with my lovely HS friends and am brimming with motivation (which is slightly marred by another upcoming battle with our home insurers in the UK). It's not always gonna be easy, but it's a damn sight more easier than being a hangry, horrible, out-of-control mess.

So, I'm back in the game guys and gals. Hit me up with some feedback and lets do this!

 

 

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Filed under Autoimmune DIsease, Diet, Doctors, Hidradenitis Suppurativa

Sauerkraut – you’re back in play!

I'm on them again. My Clindamycin and Rifampicin combo antibiotic drug treatment. It is day 3. How do I feel? Like a failure. I really do try and stay away from offending foods, but when I get hormonal flares, what can I do? I get into a bit of a cycle when I have a flare going on. I feel bad, the flare hurts, I think f*%k it, I'll just have some of this "enter trigger food here" and to hell with the results. Hmmm. Not feeling so wild child now, am I?

So what's my reasoning behind the antis? Well, I went to see a top specialist dermatologist, who refused to listen to anything I said about how food affects my HS. In fact, he rolled his eyes at me whe I said that I flare from certain foods and told me that he had in fact, done enough research into the subject to know how it works. I said there had been papers published in medical journals about it and the research was being done, but was in its infancy. He said, "There are medical journals and then there are medical journals."

I asked about CO2 surgery "It is not an effective treatment for HS – regular surgery works just as well," he said. He also told me surgery was only an option if you have an advanced stage HS. Er…did you even take the time to feel the maze of tracts under my healed HS scars? I explained that when I squeeze in one area it leaks elsewhere and he said, "Oh, well we'd definitely be considering surgery then". Right. Perhaps if you took the time to do a proper examination, you would know how bad my HS is!

His other option for me is TNF therapy, which I said I really didn't want to do because of the side effects. He told me the side effects weren't that bad. Wow – I feel way more informed now. The fact that I work in a fast-food restaurant and am subject to hundreds of different people and their germs daily is probably fairly significant if I were to be taking an immunosuppressant drug. In his defence though, he did a Dermatology Life Quality Index score card with me and said that it appeared my HS was quite detrimental to my life. He wrote me a prescription for 10 weeks antis and told me to come back and see him. I made the appointment for four months time in order for me to get my head round whether or not I would take the tablets.

Since then I have wrestled with my conscience – do I take them, do I not? Surely I should have some respect for the dermatologist and his wealth of knowledge, be a good patient and see if what they have works for me? Should I just stick to trying to identify all my food triggers? In the meantime, I developed an open lesion on my bikini line, making it painful to walk. I walk all day at work. Decision made. I started the tablets that day.

Ultimately my health comes first, but working is for a longer term vision. I work because we are building a house. A house with a big kitchen – somewhere I will be able to create all my wonderful recipes and a space big enough for me to have a centrifugal juicer, a slow-cooker, my food-processor, a microwave, etc. I work to take some of the financial pressures off of my lovely husband.

 So, it's back on the sauerkraut now. As I write this I am avoiding my sauerkraut breakfast. I need to get in the kitchen and just get it down me and a a few hours after that I'll take my antis.

For all of those struggling, wondering what the right or wrong thing is to do, I say do whatever you think is best for you. One day I will make a full commitment to getting this disease under control by what I eat, but until then life goes on and I will do whatever it takes in order for me to get to work and achieve my goals for me and for my family.

This post was written on November 21st 2013. I have no excuses for not blogging other than life getting in the way and feeling a bit meh. Sorry! 

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My Hidradenitis Suppurativa diagnosis, home birth, holistic care and help from my homies.

Back in early 2011, I knew nothing of Hidradenitis Suppurativa. It is bizarre, because I am a curious person and I knew I had something, I just clearly wasn't using my Google finger correctly to try and find out what it was. In hindsight, I think it was my blind faith in the medical community that stopped me researching more (I am usually a little researching Duracell bunny). I mean, when I've been operated on twice (I'm guessing by two different surgeons) and at least 6 or 7 different doctors tell me it is an ingrown hair/folliculitis/cellulitis, who am I to argue?

My experience of HS before it became diagnosed ranged from just a small annoyance to a post-op nightmare. Mostly I would visit the doctors with a painful lump on my bikini line and sent home with some standard antibiotics. I had two surgeries and for the last one, the surgeon packed the wound and forgot to tell me it was packed. A week later, after considerable pain and a growing infection, a large pus-covered lump fell out of my wound and I was horrified. I had no idea the lump was surgical packing and I was left weak, confused and completely in distress. Still, once I had recovered from this wound, the spots were few and far between, almost always healing fully with no intervention.

My diagnosis is a long story, because it means that I would have to explain that my husband and I left the UK to move to New Orleans when I was 32 weeks pregnant, with no health insurance, an 8 year old, a tiny budget and some high hopes…. but I won't bore you with that story. When we arrived, I looked for a home-birth midwife in New Orleans and was pretty shocked to find out that not many people knew that they even existed, let alone where I could find one (needle in a haystack comes to mind).

My Google finger worked this time though and I found the beautiful Emmy Trammell, home-birth midwife extraordinaire, who has delivered over 400 babies in her career. She was 1 of just 5 home birth midwives in Louisiana state at that time (Google Louisiana – it's a very big expanse of land that probably needs more than 5 midwives). Emmy was obliged to refer me to an obstetrician to check I was a suitable home-birth candidate and off I went to meet the lovely Dr Jennifer Lapeyrolerie (health insurance had been approved at this point!). I was sporting a half inch open lesion on the front of my pubic bone at this time, which I had had for about 7 months (my HS hadn't fully developed, it was just one or two at a time at this point). Dr Lap took one look at it and uttered the words that changed my life:

"Oh, I know what that is, that's Hidradenitis Suppurativa. Here I'll write it on a Post-It for you and you can Google it."

I got home and Google became my best friend. I knew nothing about how diet played a part in it though and could only find information about strong antibiotic treatments and no known cures. Antibiotics were of course a big no-no, as I was pregnant and I was planning to breast-feed. Plus I'd just qualified as a hippy, choosing to have a hypnobirth at home, with no medical intervention (not even gas, air or paracetamol/Tylenol) and was not willing to start pumping my body with drugs. Plus, most significantly the pain was still tolerable at this point. In short, I wasn't the desperate mess I was to become a year down the line.

Beautiful Baby B arrived at home at 12:02 in time for lunch, in a birthing pool, in a serene environment and slept like no baby I'd ever seen before. I ate chocolate cake to recover and we all shared a homemade lasagne that I had frozen ready for the big day. In the evening we toasted with champagne and the lovely neighbours brought us homemade ravioli. Baby B woke for her second feed and slept another 7 hours. Life was good.

A few weeks later HS had a little word with my hormones and they plotted, schemed and planned. They hatched a plan to ruin my life and they almost won. The HS begun its takeover bid and I slowly developed more and more lesions all on my bikini line and genital/peri-anal area. With no weapons in my arsenal to fight it, I was losing control and the only thing that kept me sane, was seeing that there were pictures of those worse than me. I studied pictures of post-surgery, which looked terrible and decided it wasn't that bad after all. I was determined not to go down that route (like I even had any clue of how this disease worked!) and I chose to suck it up for as long as I could.

Looking back now, I realise my diet probably was pretty bad at this time. I was drinking a lot of beer. Nightshades were my staple. Marco's pizza was a weekly thing (oooh I LOVE Marco's pizza!) On top of that, the move back to Europe was a stress-induced, crazy kind of nightmare, which involved selling loads of stuff and packing the rest of our life belongings in a container, selling our car and driving from Louisiana to Orlando to get a cheap flight home. Oh, and we did it all on our own. With a baby. In two and a half weeks.

My Hidradenitis Suppurativa fluctuated then. Sometimes I felt like the sores might clear, but they would just open up elsewhere. Occupied with moving around Europe and spending time with all our lovely friends and family whom we had missed whilst in Louisiana, I let it run its course, hoping it might clear up, as it had before. Unfortunately, this was not stage 1 HS anymore. There were no more one-offs, no more "once this has popped, I'll be ok" moments, because when one popped, there were so many others leaking, it was just temporary relief. It meant instead of waddling, I could actually walk like a normal human. The pain remained though. There were no pain-free days, just days that were less painful than others.

As I was still breast-feeding, I started looking for alternatives. I had always dabbled in low carb diets and I found the Paleo community online. The testimonials for better health were amazing. I found people declaring that they had stopped medication for all sorts of diseases: MS, diabetes, Hashimoto's, high blood pressure to name but a few. I searched for a link between HS and diet and stumbled across Tara Grant's site, primalgirl.com and the rest, as they say, is all in this blog!

Today, I am joined by thousands of others, who are seeking to find a solution to living with this disease. Many of us have passed up on the idea of a cure. All we want are answers and some credibility given to the fact that diet does have an impact on this disease. We want to be able to visit a medical professional and be given some dietary advice, some guidance. Perhaps even just for the dermatologists to admit that this disease is so devious, so varied, triggered by so many different bio-chemical interactions within the complex human body, that they have very little idea on how to advise us. Instead we are laughed at, belittled and shamed. We are made to feel irresponsible for not accepting some of the harshest drugs on the market. 

If you have recently been diagnosed yourself, I would say be patient, keep in touch with your doctor/dermatologist, but also develop a relationship with the HS community online. Be confident in your ability to understand your own body. If you think a certain food, environment or time of the month makes your HS worse, it is likely that you are right.

I am not giving up on the medical profession yet, but I should be able to get the answers I want – the support I need. What we need are more holistic dermatologists – realistic, whole, soulful doctors, who are not robotic pharmaceutical reps. We need doctors who will encourage us to get in touch with our bodies, whilst offering us the wealth of their knowledge in order for us to find a way of living more comfortably with this disease.

Until I find one of those lovely dermatologists, I will stay in touch with my current doctors, but I will continue to rely on my HS homies, my HS sisters and brothers to keep me informed and motivated to stay living life to the fullest with HS.

For more laymens' help and advice on how to deal with Hidradenitis Suppurativa, join us on the following Facebook pages/groups:

All of the views and opinions on this page are based on my own experience only. I am not a trained medical/health professional. If you wish to get a diagnosis or treatment for your Hidradenitis Suppurativa, please start by making an appointment with a medical professional.

The views and opinions expressed in the Facebook groups posted above are their own and are not affiliated to me or my blog page.

 

 

 

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Filed under Autoimmune DIsease, Diagnosis, Hidradenitis Suppurativa