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.

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The truth about remission.

Once again…I’m back! Losing internet connection is a little bit like being on a desert island, isn’t it? Especially if you live abroad and don’t watch local TV. It doesn’t look like I missed much and despite the frustration at not being able to Google-up everything, I survived.

So much has happened in the past few weeks:

We moved house (the second time in under two months).

We had two lots of visitors.

I underwent a three-step interview/recruitment process. In French.

I got a job.

Bubba Bodros went into childcare.

However, despite all of those highly stressful little challenges, stopping my antibiotics last Monday was the change I feared the most. Especially as I was starting work the very same day I stopped my tablets. I wasn’t sure if it was work suicide to stop the tablets, but I crossed my fingers and stopped them anyway.

The result? I’m still in remission. It’s early stages though and I am being a little bit more careful with my diet. I have no medical knowledge, but I am assuming the effects of the antibiotics will hang around for a little longer before I experience any flares. From the Rifampicin and Clindamycin combo research that I looked at, it appeared that many people remained in remission for a while after their treatment, so it could just be temporary. But lets not get down about that! Lets evaluate the absolutely fantastic situation that I currently find myself in. Remission.

I read many comments of people asking what is remission. What does it look like? Is it when your lesions heal, but tracts remain? Is it when you just have one or two spots, but the general area has improved? Is it just improvement generally? Is it possible to achieve remission at all or are these people just exaggerating??

The online Oxford dictionary states that remission is a:

“temporary diminution of the severity of disease or pain”.

I didn’t like that one. I don’t want to hear that remission is only a ‘diminution of the severity’. I had a diminution of severity the week I started eating Paleo, but it sure as heck wasn’t remission! I carried on my search down a different vein. As I have always heard of remission in the context of cancer patients, I looked up a cancer definition of remission. It states:

“A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”

I prefer that one. It was a much better description of what I thought full remission was, and what I wished for when I was in the full throes of a Hidradenitis Suppurativa flare. It was what I dreamed my diet would bring about, but a state I was unable to reach. It wasn’t the diet’s fault, I just think there were too many open sores to heal and I was still working out which foods caused me to flare.

Remission for my case is no open sores, no swelling and no pain. I can still feel tracts under my skin (perhaps just the scars from them) and have small bulges of scar tissue all around my groin. It is amazing! I hope to stay in remission by keeping away from trigger foods. it is all gravy so far!

To summarise, it would appear that when people say they are in remission , but still have some HS activity, they are right to state their case. However, for those of you seeking remission in the way that I understand it – no current symptoms at all, it really is possible, too.

Go see your derm, keep working at the diet, be positive and above all be kind to yourself 🙂

 

Bye-bye Clindamycin and Rifampicin. It’s been a pleasure.

It has been an amazing 9 weeks. I have seen an improvement in my Hidradenitis Suppurativa that I never thought I would. I’ve been living pain-free for weeks. I’ve worn my bikini lots and lots. I’ve spent evenings in the hot tub on holiday. With no daily swelling, I’ve found my trigger foods easier to spot, any little flare being noticeable. I’ve enjoyed nights and days off this crazy diet with little impact to my HS.

I’ve been living!

So now, I’m getting ready to say goodbye. Goodbye to Clindamycin and Rifampicin. My little security blankets in tablet form. My little silver linings. Goodbye to the guarantee that I will have consecutive days of no pain. Goodbye to cheating on my diet.

Guess what? I’m super scared!

I am trying to get it into perspective. I have made progress on working out triggers. I’ve had a long period of nearly 100% remission. I’ve had an even longer time with no open lesions. I’ve found a temporary fix that I may be able to use for future holidays or situations where I think I may not be able to stick to my diet. I have made progress on accepting my new eating habits – although sometimes I feel I am a long way from being fully committed to paleo eating! I have organically phased out certain foods that I believe will very, very rarely – if ever-  pass these lips again. Above all, I have enjoyed my physical freedom and am grateful for being able to once again, experience pain-free living.

Many of you have said that it will be fine. So long as I stick to the diet, I will stay in remission. I’m hoping so. The problem is, life is always getting in the way. Due to the storm damage, I no longer have a freezer. I have lost all my homemade chicken stock, fish stock, coconut milk, bones and gluten/sugar-free goodies I had made and frozen. I have a Campingaz stove instead of a proper stove top/hob. I am in the middle of moving house again – the second time in 6 weeks. I have a second job interview for a 22 hour post – minimum. I need to find a child-minder. I have a super active 2 year old and a very teenage 10 year old! I am dealing with all of life’s hiccups and obstacles in a foreign language. This is enough to make anyone lose their cooking mojo, right??!

To deal with all this, I am trying to focus on staying prepared as much as possible. I’ve been making an excess of food at dinner to ensure I have plenty left over to eat for breakfast or lunch. I am eating plenty of fruit (I am not about to make any inroads on this sugar dragon with this level of stress!). I am looking at lots of lovely recipes of all the foods I can eat. I am reading my lovely new Digestive Health with Real Food book, to remind myself why I am eating like this.

Despite all my efforts and due to the chaos we are living in, we are still having take outs on occasion. I still try to avoid things that I know will really aggravate my HS. However,  I’m sure once I’m off the antibiotics, these foods will cause me big problems, if I were to eat them as often as I am now. That’s what scares me. Just a day or two of undisciplined eating could send me back to those dark days of pain.

On the positive side, I will be antibiotic free. My stomach will be normal again. I won’t feel lethargic anymore. I won’t be reminded by my Inner Hypochondriac that I am slowly poisoning myself to death. My feet will stop peeling. Certain other parts will stop itching! My body flora will be graciously returned to its natural state – although I’m sure it’ll be awhile before I get a good balance back!

In al, I will have achieved what I set out to achieve – a clean slate to start afresh with. No leaks, no spots, no swelling.

I have been free and I have enjoyed it. Every. Single. Day.

One week left of this free ride, then it’s back to business. Better get my head back in those books!

Serocytol immunosuppressant therapy and Hidradenitis Suppurativa.

I’ve been back to see my Homeopath. I’ve been prescribed a second batch of Serocytols, a Swiss homeopathic immunosuppressant treatment. It is a natural remedy made using blood from immunised horses, who are apparently very well cared for on the Serolab farm. Serum therapy, as it is known, has been around for over a century and was initially used to treat diphtheria and tetanus patients. The development of Serocytol came from this in the 1930’s.

It has no side effects, but I have yet to see any improvement from taking it thus far. I have had a three-month treatment and am about to embark on another three months. It costs me just under 120 euro (about 156 dollars/102 pound sterling) for the three months and I take it orally in a tincture. If you haven’t already read about why I’m taking Serocytol, here’s a little recap.

A good friend of ours, a lovely French man lived in the UK and married an English woman. She had Rheumatoid arthritis. She was young and had tried different treatments. He persuaded her to go and see his family homeopath back in France (in France it is common to have a homeopath treat you as regularly as a General Practitioner). She was prescribed Serocytol and took it for three months with no results. She was further persuaded to take it for another three months and noticed improvements. About 6 months later, she took another 3-month course and she is cured.

Horsing around with Homeopathics...

Horsing around with Homeopathics…

I did some Googling, but was not very successful – you can bet that most of the research is in French, as it is a Swiss drug, and I didn’t Google it up in Français. Anyway, I like to think I am pretty open-minded and whilst the treatment is expensive, it has no known side effects (apart from burning a small hole in your pocket). Meh…I’m willing to give it ago. Also, I wanted to write about the success (or failure) of the Serocytol therapy, you know, just in case it is the cure-all for this nasty little disease!

I started the treatment at the same time as I started my AI diet, so it was lucky enough to be credited for some good results at first. However, when I fell of my AI wagon (with a few bumps appearing shortly after), I knew that it was really my strict diet that had given me respite. Despite all that, I’m not a quitter and where would be the sense in starting a treatment, if I wasn’t to give it its best shot? So, mug or not, I am going to order a second batch.

The Homeopath has already tried me on about 8 other different homeopathic remedies and this time, he has prescribed another three on top of the Serocytols. He’s a persistent man and I thank him for that, because if I were a homeopath faced with a disease as complicated and diverse as Hidradenitis Suppurativa, I would have just thrown in the towel!

I am reimbursed by the French state for all homeopathic treatments (apart from the Serocytols), including most of the consultation fee, which is only 36 euro anyway. So, it’s off to the pharmacy I go today (for my freebie homeopathic granules and probiotics). Serocytol will have to wait until next payday, but fortunately HS is very patient and I know it’ll stick around until then. 🙂

 

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……

Zero pressure = increased motivation.

Hangover. Day 3.

Wow. This is not good. How did I used to suffer this pain all the time? I am 3 days into recovery from my ‘binge’ on Saturday and my HS is horrible! I have new spots, pain and all over discomfort. It hurts to sit down again – well, it always hurts a little to sit down, but right now? Horrible! I am taking paracetamol again – just one in the morning and one at night to help me sleep. I am having to completely strap all my wounds up, to stop the pain that I am getting from the chaffing. there are so many unmentionable side effects from a flare, I am just going to stop right now!

Monday was a complete right off. Now that was due to the wine hangover. When did it get so hard to overcome a night of drinking? I guess I didn’t feel so bad Sunday, because I was still buzzing a little from the lovely evening we’d had the night before, but Monday was a different story. I was tired, in pain and just one thing after another went wrong – I even locked myself out and had to break in by climbing through the neighbours’ gardens – not an easy feat when you are suffering a big HS flare!

The good news is I’m coming out of it though and I know it will get better than this. Before, a flare like this would have really gotten me down, as I would have had no clue as to how to reduce the pain again.   I wouldn’t say I feel completely in control, but at least I know that by staying on the right food path, the inflammation will slowly subside. Even though I am moaning now, I know that the reality is that this pain could be 100% worse right now. My ‘golf ball’ has not swollen back up to a golf ball since I started the AI diet. All the HS spots I have right now have done a complete cycle over the last three days and at the risk of sounding icky (which we always do with this disease!), all are leaking nicely!

So it’s been a tough couple of days, but I am still feeling positive. The worst thing I can do is start thinking about what I haven’t/can’t do when I’m in pain. This morning I put zero pressure on myself to achieve anything and it worked; no expectations for me =  increased motivation. In the end, I managed to bake bread for the rest of the family (which always makes you feel like you’ve achieved something doesn’t it?) and ended up doing a lot of washing and housework – success!

As far as the diet goes, I am pretty keen to start reintroducing foods in a controlled way soon. I hope I don’t trip myself up again and manage to stay on the right path!