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 🙂
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!
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!
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):
- 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??
- 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.
- 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.
- 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.
- 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.
- 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…..
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 wouldn’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 was so broken, I just enjoyed the food and upped the painkillers…. holidays don’t last forever!
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!
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 Mr B and I headed home with the bubba, whilst Ty 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.
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.