Troubled by my choices

What’s is troubling you today? Is it your Hidradenitis Suppurativa?

Well, if it is you are not alone. I have been managing my HS through diet for the past 11 months. It has been going really well. There have been ups and downs and even some remission.

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. Ever wondered what you would do if it suddenly sprouted in your armpit? Well, here it is! There is nothing I can do, except be a little sad. 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 I 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 to 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 week. 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.

My Paleo Success story!

I sent in my Paleo story to paleoplan.com and the lovely Neely Quinn sent me an email to say it had been published. Have a little read 🙂Screen Shot 2013-09-25 at 15.08.30

http://www.paleoplan.com/2013/09-24/paleo-success-story-losing-weight-healing-hidradenitis/

 

Hello Day one, I’ve missed you.

I’m done messing with my diet (she says for the 17th day in a row). No, but seriously, I really need to stop using these antibiotics as a crutch and start clean-eating again. I am a month into my 10 week course of Clindamycin and Rifampicin and although taking antibiotics goes against everything I believe in, I have to say the results are amazing. I am barely leaking at all, and the persistent swelling has decreased so much so, that I can throw myself down into a seat and there is no pain. Nada. Zilch. Nothing. HEAVEN!!!

Excellent, you say, no need to write anymore blog! Actually, no. These tablets are like a holiday for me. A little respite from real life. They are toxic and have horrible side effects. They can cause liver disease. They make my tongue furry (which swilling my mouth out with apple cider vinegar has cured, by the way). They have brought back my peeling, dry, itchy skin on my feet. They make me need to poop – and it’s not a pretty picture. I have to eat loads of sauerkraut (which actually isn’t too bad). They make me tired, a little out of sorts.

Most of all, I feel the opposite of how I did when I started the autoimmune diet. I feel like I am poisoning my body instead of healing it (did I mention I was a drama queen?). I was trying to heal my leaky gut with all that lovely, nourishing, home-cooked good food and now I am attacking my insides with chemicals.

Such a dichotomy.

Whilst I’m not looking a gift-horse in the mouth (that’s a really weird idiom!), I am only on these tablets short-term. I am still anticipating that after my 10 weeks is up, I am only going to get some major remission going on by sticking to my autoimmune protocol diet. In the meantime, I want to take advantage of the healing that has happened. I want to keep those sinus tracts shrunk, or healed or whatever has happened to them. I want to wear my bikini again and agin. I want to wear mini-skirts all summer, without Micropore peeping out of the bottom. I want to enjoy the freedom of spending under 2 minutes in the bathroom, because I have no dressings to change. I want to have a go on a Space Hopper. I want to sit comfortably with my baby on my knees, without wincing when she wiggles. I want the whole, entire and wonderful healed-upness of my Hidradenitis Suppurativa to stay just the way it is.

Today I got busy. I went to an amazing farmer’s market of organic goods  Lidl and bought as much of the fresh produce as I could fit in the bags I was carrying (it’s in the ghetto and they don’t have baskets). Their organic range is CHEEEEAP! They also stock the cured ham that I eat. It lists only ham and salt as the two ingredients and it’s cheaper by at least 2 euro here than in any other local supermarket. The only other packaged item I bought from there was Perrier. I dodged the drug dealers on the way out and Mr B did the rest of the food shopping at Auchan – the actual, biggest supermarket I have ever seen. So big, I walked for about 5 minutes before I even reached the food section. So big, I think it may be bigger, even, than Sam’s Club in Slidell, Louisiana! Maybe not as big as a supermarket in Texas, though. I digress.

I made a meal plan for this week to keep me on track. We kicked off tonight with cod, marinated in a lime, garlic, coconut oil sauce with fresh parsley and basil, Himalayan pink salt and organic cracked black pepper. This was served with sautéed green beans, oyster mushrooms, onion and garlic and all cooked by the lovely Mr B!

De-li-cious! Made even more tasty, because I didn’t have to lift a finger to cook it!

For the rest of the week, main meals are as follows (not in any particular order):

  1. Easiest roast chicken ever –  Instead of leeks, which we don’t have, we ‘ll be subbing courgettes in to this dish and serving it with salad. Who says roasties can’t be served up with a salad??
  2. Chicken and vegetable curry – using leftover chicken, homemade coconut milk, homemade curry paste (excluding paprika and chilli), ginger, garlic, onion, carrots and homemade chicken stock (I use this recipe, with frozen leftover peels and chicken bones). Served with cauliflower rice, fried with peas.
  3. Healthy Gluten-free Life’s Dutch Oven Pork – as featured on Nomnompaleo’s page. Love our Le Creuset Dutch Oven cocotte, which cooks food so evenly and keeps it moist. We’ll have that with sautéed broccoli, onion and garlic all fried in silky smooth organic coconut oil of course! Perhaps a side of salad, too.
  4. Large wild gamba, marinated in lime, garlic and ginger, seared on the griddle and served with my scrummy roasted sweet potatoes. And salad. And probably sauerkraut for me.
  5. Asian chicken thighs – again Michelle from Nomnompaleo’s recipe. What? Again? Yup. Each time I Googled the ingredients, hers was way up there and looked delicious, with only a few ingredients that I needed to remove to adapt for the autoimmune protocol. Served with salad.
  6. Sweet potato and prawn soup, which we’ve adapted from an Everyday Paleo recipe. We’ll have some leftover coconut milk and prawns (there are two kilos in the freezer and we’ll have to defrost the lot , so we’ll cook ’em all and throw some back in the freezer for this dish.

Et voila! That’s me all sorted for the week. I hope to all that is Holy and Mighty that there are no more sh*t storms this week and I manage to keep on track (and off the incredible Bordeaux wine).

Day one is done…..

Antibiotics. Day….bleurgh…can I quit yet?

I am not a happy bunny. My tummy is getting worse and trips to the restroom have increased significantly. I am trying to deal with my Inner Hypochondriac, normal logic, a chaotic moving house schedule and a two-year old. It’s pretty tough trying to give them all some dedicated time, especially as mostly, I just want to sleep. I am fighting the urge to quit, but am being sensible and just increasing my fluid intake. Lots of lovely organic herbal teas, fresh ginger and lemon infusions and strictly no coffee.

I stopped taking Sauerkraut the day before yesterday and it is since then that my tummy has gotten worse. Coincidence maybe, as we are now Day 10 and the antibiotics may have just slaughtered all my good, internal gut bacteria. Or, who knows, perhaps the Sauerkraut really was helping? Obviously I’m back on it. A huge bowl at breakfast only to be told by Mr B that it makes more sense to have them apart from the antibiotics. I knew that really. Well, I didn’t, but it does make sense, so I researched it and it says, yes – at least two hours after the antibiotics. I’ve also just had a huge bowl of fermented raw whole milk yoghurt. I’ll eat some more Sauerkraut later. A little bit of overkill (‘scuse the pun), but I like to be proactive.

Whilst I was buying the Sauerkraut at the organic shop, I stopped to take a look at the probiotics. I couldn’t find any that weren’t in maltodextrin or didn’t contain other unsavoury ingredients. The main probiotic that they use here is Brewer’s Yeast, also know as Saccharomyces_cerevisiae and it’s ‘close cousin’ Saccharomyces boulardii (the strain often found in over-the-counter probiotics). I’m not sure if I should take this yeast. I am yet to find any conclusive, scientific evidence online that tells me which yeast is good, which is bad and whether or not I can take them with an autoimmune disease . I’ve found plenty of sites selling their yeast products, that state their yeast is fine, but I’ve been duped by the food industry for so long, there’s no way I would even consider this information advisory in any way shape or form! I’m sure the medical/scientific explanation is out there somewhere. Voila!

Despite my gastrointestinal distress, my HS is much better. It is less inflamed and hardly leaking at all. I had paprika and chilli flakes last night for the first time since going autoimmune and I did have a mild reaction. Nothing too bad, just more leaking and a little painful late last night and this morning, but it’s all calm again now. That’s one more food stuff I can cross off my list. I am not as sad as I thought I would be – there will be no mourning for chilli today. I’m sure I previously consumed enough to last me my whole lifetime anyway.

So life goes on. I won’t quit the antibiotics just yet and I will be taking it easy. Mr B tells me just to keep resting, so that makes me feel better about the whole thing. I do what I can around the house and whatever isn’t done can wait. As usual this methodology works well for me and I am being quite productive. In particular, I’m looking forward to a peaceful end of the day and making dinner tonight – pizza. Home-made dough bases for the others and a sweet potato or cauliflower crust for me with spinach, cured ham (cured with salt), raw cheese Comte, olives and capers.

Probably with a side of Sauerkraut.

The Bridget Jones of dieting and yam-yams.

8 days. 8 days of antibiotics and 8 days of eating clean. Supposedly.

I’m happy to say that I have only missed one dose of my antibiotics. Not happy because I’m intoxicating my lovely gut with these drugs and a missed dose means a health break for my insides. No, happy that with the chaos of moving out, I have managed to remember to take them so often. It helps that Mr B is on board and I get the odd gentle reminder to get my ass of the sofa at night and take them. If I’m going to trial this antibiotics thing, I’ve got to do it 100% otherwise, what is the point?

My update on the antibiotics…well, I have still got the unmentionable going on in (and then swiftly out of) my stomach, although it is only happening once a day, so it’s bearable.  I have no gouty symptoms anymore, but what I do have is overwhelming tiredness. Like the type you get when having a flare (or a hangover). Just ridiculous I’m-gonna-lie-down-right-here-on-the-tiles type tiredness. Tiredness that makes my fuse reaaaaally short. The same as when you’re horomonal. That kind of tiredness. I’m hoping it’s yet another one of those symptoms that will gradually fade away, but until then I am having to be extra kind to myself, in order to achieve anything. Otherwise my Inner Perfectionist (she lives on the opposite side to my Inner Hypochondriac) keeps getting really cross that I am not getting my chores done, efficiently or at done all in some cases. I’m ignoring her and the Hypochondriac. Let them battle it out together. I’m just too tired to listen to either of them.

A new side-effect is yam-yams. This term may not be a familiar term to you, but you’ll see it makes true, onomatopoeic sense. Have you ever had a dry mouth from surgery, or from taking medication? When you are so dehydrated , your mouth feels like the inside of Ghandi’s flip-flop, in the desert, after he’s walked a few hundred miles? Well, yam-yams is the sound your mouth makes when you try to rehydrate it without actually drinking. When you suck your tongue and open and shut your mouth. Yam, yam, yam. This is what I have. Constantly. Despite drinking a fish pond of fluids daily. Still, I won’t die (really, Inner Hypochondriac, I really won’t.)

Then there’s my diet. Hmmm. I am mostly doing good. Lots of beautiful meals, but little creativity going on. Roast chicken or pork. Roasted vegetables. Pan-fried fish. Sautéed courgettes, garlic and onions. Roasted sweet potatoes. In cubes. In wedges. In bigger chunks. Lots of smooth coconut oil, lavished all over everything I cook. Lots of raw coconut. Tinned fish. Sauerkraut. No grains, bread, pasta, sweets, processed food.  Ok, no processed foods apart from two or three. Dried apricots and wine. And a little cheese. I had one glass of beautiful, high-quality, red wine at a Wine and Cheese party Saturday night. You would think that I would have learnt my lesson after nearly dying the day before of all the side effects of my meds; instead I ignored the potential cirrhosis of the liver and sipped a lovely glass of Burgundy.

I am Bridget Jones. Of the diet world. I make poor choices, repeatedly.

To be fair, the wine didn’t cause me to flare, neither did the raw milk cheese, called Langres (delicious by the way and from a beautiful little Fromagerie, where 95% of their stock is cheese made from raw milk). Maybe this lulled me into a false sense of security.Then came the dried apricots….

Yesterday, I was baking for Ty’s school fair. My Sugar Dragon was mocking me, as it always does when I’m baking. How tough is it to wash your hands every time a bit of chocolate or cake mix touches your fingers? To put the dark chocolate-smeared spoon straight in the dishwasher, fighting every instinct to put it in your mouth?? So, I caved and had a few apricots. No big deal, I thought, I’m on killer antibiotics, so it should be all right…

WRONG! The apricots have the highest fructose content of anything in the house (apart from the dried figs – thank goodness I didn’t see those!). Fructose and anything high sugar causes me to flare. In fact there is so much fructose in those little, seemingly harmless, gooey balls of organic, dried fruit, that I would probably have been better off licking the dark chocolate off the spoon.

So, take antibiotics if you want. Or don’t, it really is an individual choice that may even change over time. However, if you are going to make one personal choice that helps you to heal, try to cut out the sugar. It does seem that sugar, along with heat and humidity, really does affect so many people’s Hidradenitis Suppurativa. It is not that easy, especially if you live with others who happen to exist in a world where school fairs demand cakes. Especially if you continue to feed your inner Sugar Dragon, instead of slaying it. But it is definitely worth it in the end.

Today’s conclusion. An autoimmune protocol diet (with no added sugar) definitely works and hopefully Bridget Jones will learn to accept this very soon.

Day 8 and the jury is still out on the antibiotics. Now, where did I put my pint of water? Yam, yam, yam……

Antibiotics. Day 2

I have started my antibiotics and am back to the strict Autoimmune protocol diet – except for organic coffee (insert here: compulsory human deviation to any given diet to suit oneself). I am feeling positive, but apprehensive. I have minimised the amount of time I Google up all the negative effects of big pharmaceutical drugs, but can’t help being a bit of a hypochondriac already. I think my ribs hurt – is that a side effect? I have earache – that must be a side effect. I’m a bit tired – a side effect no doubt. Or maybe that was just because I stayed up until 1 am last night….

To prepare for the antibiotics, I bought some probiotics in the form of organic sauerkraut and Kombucha. My research on probiotics was a bit fruitless. I read some interesting stuff here by Matthew A.Ciorba, MD, Missouri, which gave a comprehensive overview of studies that have been conducted so far.

Can I have a croissant instead??

Breakfast? Can’t I just have a croissant instead??

My conclusion: probiotics work, but not all probiotics are equal; not all probiotics have the amount of million, billion bacteria load in them that they promise; not all probiotics survive stomach acid to make it to the gut to protect you; not all probiotics will populate the specific bacteria you need to protect your gut. Pretty conclusive stuff then, right? I’m still not sure I’ve properly researched controversial Kombucha properly and I’m not sure what other probiotic foods I can have. I tried kefir once and it made me feel funny! Plus, I’m supposed to be avoiding dairy, right? Tips please!

I’m still feeling pretty down about taking the antibiotics, but I can’t help feeling that little sparkle of hope that you get when you feel a) in control and 2) you may have found something that alleviates the incessant pain and misery HS lavishes upon us. It’s enough hope to motivate me to get back to eating salads anyway. My sugar dragon is raging again and if I can just get past the next two weeks without losing my mind or biting anyone’s head off, I’ll be a happy bunny. I’m just going to take it easy and see how these antibiotics work out. Not really. We’re moving house in two weeks, so that should take my mind off the pain and the drugs….

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Antibiotics, a 10 week trial.

I have made a decision. I am going to try the combination of antibiotics that I was prescribed in December last year and refused to take – Rifampicin and Clindamycin. Recently, I haven’t had any standard medical treatment for my HS. Years ago, I was prescribed topical steroid cream, antibiotic cream and standard antibiotics, when the HS was misdiagnosed as foliculitis/ingrown hair. Since being properly diagnosed, I have been taking homeopathic meds and painkillers. Despite my recent failure to keep it up, the autoimmune protocol diet has proven to be the most successful treatment I have had. But I have well and truly off that wagon and rolled way off down the hill. I need something to help me get back on. Is this it?

I have completely mixed emotions about this decision. In fact, when I agreed with my GP yesterday that I would try the antibiotics, I burst into tears. Then when I went to the pharmacy to collect them, I welled up again. It seems that I have spent so long (it has only been a few months, but I have never denied being just a wee bit melodramatic), trying to deal with this disease without hard drugs that this just seems like an epic fail. On the other hand, there is so much going on in our lives at the moment – trying to pack the house up for our move, deal with an awkward landlord and all the other general life stuff that happens when you are dealing with a building insurance claim from abroad and building a house! I am struggling to keep up with a varied diet for me and deal with the various food intolerances that my little one seems to have, too. All in all, I just don’t feel like I am making progress at the moment and my meandering motivation just will not come back. And combating this disease by diet needs 100% motivation.

I have come to the end of my Serocytol homeopathic treatment and had written it off as not working. However, after speaking to my friend, who recommended it in the first place, I probably should carry on with it for another 3 months before making any firm conclusions. At the moment though, I haven’t got time for this disease. Waking up in the night in pain and barely being able to sit down or walk, makes it very hard to deal with life. So I will book an appointment with my homeopath (who lives a long drive away) and get on with my other meds. On the plus side, my GP gave me another referral to a Dermatologist who he says has a lot of experience in her field. Lets hope she’s more cop than the last one!

I have read plenty of stuff from you guys and medical publications about the treatment that I am about to embark on. Many say it’s the Devil’s work. Many say they work just fine. Others stop due to gastrointestinal distress they suffer, whilst some say probiotics (sauerkraut, kefir, or pills) stave off the worst of the side effects. I would love to hear more positive (or negative!) experiences and if anyone has a time frame as to how long it worked for, or the type of improvements they found – or even if it worked in harmony with a change in their diet? I’d really appreciate more information about it.

All I know now is I don’t feel proud of what I’m about to do to my body, but like everything else, I am willing to give it a shot. I’m going to have one last weekend of Champagne (my hubby’s birthday is today), eating out and pretending that this disease isn’t having a major effect on my life.

So Monday here we come. I have my sauerkraut ready, antibiotics waiting and I’m good to go.

Bring it on.