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/

 

A dramatic mini flare.

Life has been rosy lately. No Hidradenitis Suppurativa means I am a new woman. I can sit down like a young person again – no awkward movements whilst I ease myself into a chair like an arthritic 90-year-old sucking on a lemon. I can walk for miles without developing a John Wayne swagger. I can let Baby Bodros jump up and down on my lap without wanting to cry out like a wounded dog. I go to work. Actual work and I physically work my ass off. To a normal person, these little delights are commonplace and now I am also guilty of taking it all for granted, as it has been so long with no pain.

Then – uh, oh…complacency came and bit me on my healed, pain-free, little ass! We had a take-out and the next day – mini flare!

It was an asian shrimp and ginger dish. No extras, no rice, no noodles, but no doubt cooked with sugar, soy and God only knows what other unhelpful foods this HS sufferer should probably avoid. And it wasn’t even that good!

I developed a tiny spot in one of the unmentionable zones. It was small and leaked straight away. I nearly cried. Not from the pain, but reaching for all my little potions to clean it brought back the horrible memories of constant cleaning, wound dressing, confinement to the house during a flare and all the emotions I went through at these times. Yes. I was feeling very sorry for myself.

Two days later and it is all fine. It has nearly healed and after much placation by Mr B, my Inner Drama Queen has headed back up to her tower, back on look out for the next inevitable, looming crisis. He gently explained that it took the HS two years to get as bad as it was, so a little hiccup is unlikely to induce over 30 open sores overnight. I had been so used to any little flare aggravating the whole area, it is hard to believe that with no open sores, a little flare will remain just that. Little.

So the moral of the story? Be kind to yourself and don’t freak out. Our HS is always going to be a part of us – a part of us that we have limited control over – so we will always have to find ways to adapt around it.

Bonne journée 🙂

A fortnight post-Clindamycin and Rifampicin

It has been two weeks since my last antibiotic pill. I am in remission. I did feel absolutely fantastic….then my stomach went a little crazy.

It started Wednesday evening and followed the next day. I was working and was a little worried, but managed to control it all until I got home. Then it really was bad! I was feeling pretty weak by then, as I had just been drinking chicken soup (hardly chicken soup – just hot water with an organic stock cube, as we have no homemade stock due to freezer fail – see earlier posts). I managed a trip to the pharmacy with the wee one and purchased some Immodium and some super expensive probiotic. I then dealt with two more days of gastric distress and working really hard, trying to placate Inner Hypochondriac who had completely written me off as a terminal IBS sufferer.

A few days later and I have some perspective. It turns our Inner Hypochondriac was wrong once again. In fact, everyone in the family had a dodgy tummy and we’d all had some sort of bug. On the plus side, I lost 5 pounds and I look fabulous 😉

The Hidradenitis is behaving itself. There have been no flares. I still haven’t got my cooking mojo back. It is exacerbated by working and no hob/freezer, but it doesn’t mean we’re not eating amazingly tasty food, it just means I’m not being as creative, which is a shame. I have been mainly eating salads and basic proteins – fish, chicken, duck and steak. Steak hasn’t made me flare, which is strange, as it used to. It may be the fact we are buying it from a local butcher and it could be less pumped full of antibiotics etc. Who knows? I am also eating plenty of raw milk cheese – Gruyère, Comté and recently Saint Félicien – very stinky! Before my dodgy tummy, I was also eating a little bit of my organic homemade bread, made from spelt flour. I let it do a double rise, before I cook it and it doesn’t make me flare. I know I really shouldn’t eat bread, but occasionally I have felt the urge to eat it and as my work has been pretty physical, I’m not about to get stressed out about what I should and shouldn’t be eating on top of being physically tired. It has been fine if I just have a small amount and needless to say, I only ever eat the bread I make.

So far, so good. Generally being kind to myself. Generally working really hard. Generally loving life 🙂

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!

You say saccharose, I say sucralose.

So far – so good – the meal plan is working! It has been a success (with only one slip up –  a last-minute fresh pizza when the day ran away from us) and I feel good. My Hidradenitis Suppurativa is well and truly behaving itself. I am still taking my antibiotics and have the odd nap here and there, but mostly I’m much better. The doctor has prescribed some steroid cream for my feet and they have healed nicely.

I did have a little flare earlier in the week. I was a little shocked (and reminded of the horror of this disease) and experienced some pain for the first time in what seems an age. I couldn’t work out what had happened (it wasn’t the pizza, which was later on in the week and incidentally didn’t cause any reaction), so had to do a little rethink about my food consumption this week.

I saw a friend do this the other day – he asked his girlfriend what she had eaten yesterday and the day before. As she sat thinking really hard, I asked him why he had asked her that. He told me it was a remedy for hiccups. Thinking so hard made them stop. This isn’t relevant, but apparently it works and everyday can be a school day, right?

Anyway, I had to think about what I’d eaten, which was fairly easy, as I written it all over Facebook and this blog. A was a little baffled, as it had all been whole foods and not much fruit. Then I had a thought. My supplements. Uh-oh. Rookie error. Checked my French probiotics and – bam! There it was! Saccharose. In my probiotics. All white, innocent and promising to heal my little tum tum, when actually the devious little beggars were running around my insides causing chaos! Now, I had taken a little peek at the ingredients and honestly? I thought saccharose was a sweetener. Straight up. Totally confused it with sucralose. I just thought to myself that I’d forgo a little chemical toxicity to get the benefits of the probiotic. Silly, silly me. Luckily, I had only started taking them the day before and since I’ve stopped, little flare/leak has totally healed.

There have been no sh*t storms this week – a few minor issues, like our upcoming holiday to the UK being delayed because the car is still in the garage, but on the whole a good week. Also, I have concluded that pure sugar= instant flare, but fresh pizza=no flare. I’m sure that I would have to explore this further and whilst I’m not about to go out and eat a ton of gluten/dairy/nightshade laden foods, I am happy that the odd slip with certain foods may not be the be all and end all for my HS.

Meal plan recipe tonight is the wild prawns on the BBQ – yummy!