Friday 14 June 2013

In a bid to keep up with all the lovely technology that keeps us all connected so well, I have moved my blog to Wordpress... All these posts and more are at the new address www.healinghidradenitis.com

Please come along and you can now follow me on Twittter @healingmyHS, Facebook at Healinghidradenitis and click the "follow" button at my blog to receive my updates whenever I post!



See you there! :)

Saturday 8 June 2013

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 love to hear more 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.

Wednesday 22 May 2013

I am broken.

My holiday is finished and my HS is having the time of it's life. For those of you who are using diet to control your HS - well done. Stick with it - it really does work. I have eaten potatoes, crisps, sugary desserts; I have drunk many different types of alcohol - one too many cocktails. I have eaten bread, had gravy and just thrown caution to the wind. I'm paying for it now.

I was definitely allowed the mackerel, rocket and the flowers. Don't ask about the rest...
Whilst away, I didn't get my usual 8 hours sleep as Nina woke up every morning between 6:00 and 7:00. I didn't stick to my diet. I lived on painkillers. I spent lots of time with friends and family. I had an amazing time.
Strawberries are Paleo, right? 
I must admit that I'm feeling pretty rough right now, though. Not only are there post-holiday blues to contend with, but I am almost back to where I started diet-wise. I have a lot of admiration for those who can stick to the diet whilst away.
I definitely wasn't the one laughing last....
Perhaps if I hadn't had so many different things planned and so many dinners out, I could have made more of a concerted effort to eat better. Perhaps not. Perhaps I'm just not ready to admit that I can control this disease, by limiting the foods I eat. Although it is apparent, now more than ever, that my HS is definitely affected by my food intake. I did learn that it seemed to be at its worst when I had a combination of gluten and sugar. The occasional glass of good wine didn't affect me too badly before, but a combination of apple crumble and rum cocktails induced a major flare.

It's probably a good time to mention that I have been on the homeopathic treatment, Serocytol, for three months. I have been taking a combination of four different drops: SRE, Neuro-vasculaire, Malphigien and Emonctoires. I started taking them the week after I started the AI protocol diet, so when my symptoms improved, I was not sure if the Serocytol had had an effect. However, after the last couple of weeks of free-eating, and the return of the bad-boy flares, I am 100% sure that they haven't worked for me. I should go back to the homeopath and try something new. I really should. Soon. Not now, but soon.

So, its back to reality. Now, if I could just find where I left my motivation before I went on holiday.....


Sunday 19 May 2013

A Hen weekend of dancing, camping, drinking and amazing company is at an end. I am soooo sore - it's horrible, but it was worth it!

Extra large erection - no men involved!

Preparation was pretty easy, as we'd already taken tents etc out to the campsite. I just had to make sure I had all my dressings and food that I could eat (and the essential camping item - a pillow). I had packed a whole load of mackerel, salad, fruit and chopped raw veg to snack on, but in the end, after I'd had a mackerel salad lunch, I couldn't resist all the lovingly prepared cakes that were laid out.

What's the deal with cheating when the outcome is not about weight gain though?? It seems that now when I want to eat something sweet, it's not the same as cheating for normal diet reasons.  When I used to diet, I would have had a couple of small slices of everything - savouring the taste and knowing that even a small amount is better than nothing. There was even the possibility that by my next weigh-in, I could have lost the extra pound or two. Now, the philosophy is different. Any sweets I have WILL have an impact on my HS, so I don't seem to be able to limit the intake, stuffing in as much as my (now delicate) tummy can handle! On this special occasion, it was also being washed down by a Malibu rum cocktail.....

A couple of hours later and the effects of having this yucky disease started to creep in. I suffered some stomach distress from the creamy cake fillings and various sugars from the alcohol and juice (yummy...oooh..ouchy). It's pretty annoying, but cutting out all dairy has made me lactose intolerant. Another annoyance...I couldn't partake in a Space Hopper race to the pub, as bouncing on this sore backside is out of the question. I'm sure I would've won. On a positive note, I got to take some great photos. Every cloud and all that.

The limousine was cancelled...
I managed to curb my indulgence at the pub and ordered a poached salmon and salad. It was delicious, but instead of replacing the usual potatoes with an equivalent sized salad, I was given just one small side bowl-full of green leaves and green pepper (that I can't eat, as peppers are from the nightshade family). Usually my portions of salad at home are enormous and contain more than just leaves, like carrots, fennel, radishes and cucumber - yummers. Next time I must remember to specify that I'd like a rabbit hutch portion of salad to replace my carbs.

Back at the camp, I got back on the cocktails. I only had a couple of glasses before I got the camping stove on for some green tea. Instead of feeling like I was missing out, I quite enjoyed nursing a hot cup of tea and watching the others get hideously drunk!

The following morning I woke up in pain and headed straight up to the shower block. Surely there's nothing more annoying than that person on a camping trip who gets showered and dressed before you've even lifted one heavy, hungover eyelid?? And the others were all very hungover! I had to do it though - I needed to wash all my wounds and redress them, so that I could walk with less pain, help take the tent down and clear up our stuff. I think I was back before anyone really noticed I was gone.

I took some anti-inflammatories to reduce the swelling and the pain. When I am strictly AI, I don't use ibuprofen as it messes with your stomach. On this occasion, one more bad ingredient in there couldn't have made any difference. For breakfast I had a tin of mackerel and a grapefruit - I can't believe I managed to resist the bacon rolls that the girls were eating! Pain is pretty motivating though, so I was glad I'd packed some sensible food to eat.

We packed up in about 40 minutes - amazing considering the hangovers. I was back in Sandown ready to meet my family for a pub lunch...another food minefield, but at this stage I'm so broken, I'm just enjoying the food and upping the painkillers.... holidays don't last forever!




Tuesday 14 May 2013

I am heading back to the UK for a surprise visit for a close friend's hen weekend. I am so excited about the holiday and seeing friends and family, but extremely apprehensive. I guess travelling alone with a 22 month old baby would be a scary enough prospect for anyone, but for me that is not the biggest issue. I have different concerns.

I will not have my own food and limited access to kitchens for the first couple of days. After a day of travelling on Tuesday, we will be staying at a friend's house in Hassock's for one night and will be visiting in London the following day. I won't be at Mum's until Wednesday evening. I'm still struggling to come to terms with the limited foods that I can eat. As I so often fall off the wagon, I feel it's a little hypocritical of me to start demanding that people make allowances for my diet. On the other hand, I should have the right to choose when I want to fall off my wagon - shouldn't I? Even 3 months on, I'm still not sure how to deal with my dietary changes in new situations. In any case, I've packed a whole loads of fruit for the trip and plan on buying bags of washed salad for my lunch on Wednesday. My lovely, accommodating friend has reassured me that my food needs are not too tricky, so Tuesday evening should be fine, too.

My other issues are a bit more icky. Dressings and washable pads. I'll strap on some Mepilex, gauze and Micropore before I leave, and at my first loo break, I'll just ditch them. If I don't strap up and I have to walk for some distance, I get sore much quicker. However, with a suitcase, baby and baby-carrier, I don't think I'll quite manage to replace the dressings on my journey. What will I do with my washable pads (yes, I have made my own home-made sanitary pads and they are much more comfortable than the plasticky disposables)? I think I have a waterproof zip bag that I can use - but who wants to be carrying dirty pads around with them?! After weighing it up, I figure it is just another thing I should get over. I just need to be prepared when I go change the pads, and have my little bag ready.

I'm disappointed that I'm already flaring from my last holiday. I so wanted to be flare-free and hoped to indulge a little more this time. With a camping trip planned for the weekend, with camping food and cocktails, I really wanted some leeway. On the other hand, I'm also disappointed that I'm completely off track. I so wanted to be disciplined with this. I wanted to heal my leaky gut, be flare-free, head into remission and live a pain-free life. Instead I am on a different path, but one that means I am living and enjoying life. I am not ensconced in my diet and I am not monitoring every little change in my skin. I am socialising, laughing, having fun and eating fun foods. I am, for much of the time, pretending I haven't got this disease. My flares are much worse, but I know that after these holidays, I will back to reality. HS doesn't let you forget for long.

Sunday 12 May 2013

We're home!

I made it through and did not run out of salad, nor starve. I had a lovely time, although I did spend an inordinate amount of it preparing salad for seven people every meal!
Serving up my famous roasted sweet potatoes, grated ginger, cumin and garlic...
I did cheat a little, but I didn't suffer too badly. I definitely felt the effects of having some wine and cheese, with the inflammation getting quite bad towards the end. Everybody was super accommodating and I really didn't feel like my diet had too much of an impact on anyone else, which was a relief.

A little reading break at the Beach Library...
Definitely not wearing my bikini in this one!
The weather was crappy and the boys only got to surf a few times. It was so cold, that there were no bikini moments - another thing I was dreading! I had bought a lovely pair of bikini surf style, short shorts for the occasion, so that I could wear bikini bottoms underneath with all my dressings, too. I know when the time comes, I'll still be paranoid about wearing a tight fitting pair of shorts. C'est la vie!

When everyone had ice cream, Nina and I had sorbet, which was delicious. I really savoured those junk food moments, knowing that it would all have to be very worth it for the consequences that would follow!


We had to have the apartment clean, sheets laundered and be out by 10 am Sunday morning, so thought it would be easier to clean up Saturday and spend the last night at our place - just an hour's drive from the apartment and on the way home for the others. We packed up, cleaned up and Ed and I headed home with Nina, whilst Tyla and the others spent a few hours at the lake.

Our holiday roomie, Elliot - what a beauty!

We got a BBQ on the go and finished up with plenty of good wine. A plus for me was that I had everything unpacked, put away, washing on and all back to normal by Saturday evening - a day earlier than expected.

Back in the tiny kitchen, marinating the pork chops for the Barbie.
So overall, it went well. I had to resort to painkillers by the end of the week, but only in the evening before bed. I had one incident of a little stomach distress, after treating myself to some 85% Lindt chocolate. Another downside to avoiding certain foods, is that your body quickly develops an all round intolerance to them. From having an iron stomach for my whole life, I am now lactose intolerant. I did eat nearly the whole bar of chocolate, so perhaps I went just a little overboard...

Now I must prepare for my little trip to UK.  I fly out Tuesday with the wee one, so I need to get myself ready for holiday part deux....


All images © 2013 Leila Bodros. Not to be used, copied or redistributed without express permission from Leila Bodros.


Tuesday 7 May 2013

I'm a little unnerved this week for two reasons.

Firstly: there are two bank holidays - tomorrow and the next day.

For those who live in the UK, you'll know this normally means epic panic buying by most of the nation, who are compelled to stock up like there is going to be a war/food drought. I went shopping the day before yesterday and there was hardly anyone in the store. Maybe I was a day early or maybe in France, as they are used to the supermarkets being shut on a Sunday, they just buy their normal shopping, safe in the knowledge that unless we really piss North Korea off, we will all be able to go and buy our usual food on Friday. In any case, I set about my shop like a true panicked Brit, wondering what someone who only eats fresh food does when all the shops are shut?? Cue, a little more panic and then huge stockpiling of salad making ingredients....rocket, iceburg lettuce, radishes, cucumbers, carrots, apples, lemons, limes, oranges, olive oil. My trolley looks like I am about to open a restaurant for rodents, but my panic is subsiding. I've bought the lemons, limes and oranges to make a three citrus fruit vinaigrette after my reaction to vinegar (or was it the artichokes? Who knows?!). I plan on making a whole jar of it, so whenever I fancy some more salad, I'm good to go.  This time of year and with a little vinaigrette, I can eat piles and piles of salad. I also buy plenty of tinned mackerel, veggies and soya stuff for the wee one. I know soya products are no good, but I feel my hands are a bit tied as she's lactose intolerant and I can't find any other substitutes here. The reason I've bought yoghurts leads me to reason number deux....

We're going on holiday.

I don't mean an all inclusive fortnight in the sun with no kids, but a lovely coastal, family holiday just an hour's drive from here, in a self-catering apartment. We are going with 2 other couples, their baby and a dog. They are a lovely combo of French, Brazilian and Ecuadorian and are bound to bring plenty of milk products like yoghurt, that I'll need to substitute when Nina spies them. I am happy to get away, but a little bit apprehensive. Not only will I be away from my (tiny) kitchen, but I will be sharing meals with four other people. I don't think my diet is too restrictive - I can make delicious huge main meals that everyone can enjoy. However, I am worried about the little things that others may notice, like turning down cheese, bread and wine or eating a cooked plate of courgettes and mushrooms for breakfast, when everyone else is eating cereal. The worst fear is having to say no to a dish because it has an ingredient that I can't have. We have all agreed to bring food for two main meals, but we've also said not to worry too much about my dinners as I will bring extra food just in case. It's just annoying to be different though or make others feel like they're excluding you, right?

Anyhow, I have bought enough food to see me through - pretty much for the whole 5 days. I am thoroughly prepared and pretty organised, if I do say so myself. I have made my vinaigrette, we've packed the drill and hammer to open the coconuts and there is enough stuff to see that we live comfortably for the duration of our stay. I've been packing and repacking, making sure I have all my dressings and medicines, cleaning the house, tackling the ever growing pile of washing and organising the girls.

I'm exhausted. Holiday, anyone??