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!

A stormy welcome home….

I’m back! I have been away in the UK since July 17th and have had a wonderful holiday. I managed to catch up with loads of my beautiful family and friends. I relaxed. I ate a lot of what I wanted. I drank (an awful lot of) home-made fresh fruit daiquiris, wine and champagne. I didn’t get my necessary 8 hours sleep per night. I spent two weeks unbeholden to HS and I LOVED IT!

Ok, so now I’m a little bit broken. I have no flares at the moment, thank goodness, but I am very tired! On top of that, we arrived home to a storm damaged apartment. After travelling for 18 hours, most of it in the car, we were greeted by the stench of rotting food. At 1 am, instead of putting the girls to bed and having a well deserved cup of tea, we had to get our heads round removing the rancid food and getting the stench out of the apartment. If that wasn’t bad enough, the ceiling in the girls’ bedroom fell in after we had put them to bed, so we had to take them out and rearrange the sleeping areas. We are now sleeping in the equivalent of a one bedroom flat and my auntie is here with us, on holiday. Both the girls fell ill the day we arrived and we have been up most nights with the little one, who is struggling to breath, is coughing and has gunky eyes. Poor babies!

The landlord has been amazing and has offered us a larger apartment across the road for the same price we are paying here. We had moved into this smaller apartment to save money for the house we are starting to build nearby. It has been a bit of a struggle to fit everything in here after downsizing from a three bed house with a garage and garden to a two bed flat with a balcony, so upsizing will be great. Once we’re in!

While we deal with this little trauma, the poorly kids and the house move (and for added extra pressure – a job interview for me this week), the blog will be on hold. Feel free to ‘like’ my Facebook page though, Healing Hidradenitis, for the occasional update and super awesome links I find, out and about on the web.

Very soon, I will be fully functioning and ready to roll again.

A bien tôt!