Arrogance, antibiotics and dressings.

This post is all about HS, so if you are squeamish, have no interest in blood and pus and other disgusting aspects of this disease, please feel free to move on!

I am sick of not getting anywhere with this. Whenever I have a few days like this I find the best way is to try to find something that gives me some hope that I can live a little more comfortably with this condition. So, I decided to email some dressing companies based on a wound care sheet I found. Convatec were very polite, but said they could not send me any dressings direct as samples are only sent to dermatologists/organisations etc. The nice lady from Convatec was very sweet and sent me a link to the Hidradenitis Suppurativa Trust website and urged me to go and see a dermatologist here. I’d very much like to, but my last experience of seeing a dermatologist in Bordeaux didn’t go so well.

We went to a hospital in Bordeaux. After waiting for nearly 2 hours, we finally met the derm. He brought in a whole load of students to examine my backside, spoke only in French, addressing Mr B most of the time. He spoke English to me at the very end, so obviously he could have explained the tricky bits in English, but chose not to. When I tried in earnest (in French) to explain how I had changed my diet and tried to change my whole lifestyle to combat this disease from inside, he hardly acknowledged it. Instead he wote me a prescription for a 10 week course of antibiotics and said, “If you were dying you would take it, but it’s up to you.” Oh, the arrogance!

Anyway, I am back to finding my own path for the time being. 3M called me back and said they would get their resident doctor to call me about types of dressings, but I never heard back. I decided to ask my homeopath for a prescription of Duoderm Extra Thin, but as usual when I think everything is going well the language barrier prevails and I got a prescription for Duoderm E Border (I believe it is Granuflex in the UK) instead.

I tried it the next day, carefully cutting it out and placing it directly on the sensitive spots that were leaking. It was weird, awkward and a bit cumbersome. The patches were quite thick and they were sticky, which meant my butt cheeks kept sticking together during the day! By the end of the day, I had had enough and tried to take them off. Well, it says just hold the skin and gently peel back…right…that’s not quite how it happened with me! I tried pulling and it was so stuck to my skin, I was in agony. Ed came to help me and at this point one side opened and pus dripped all over the floor. I started laughing at the absurdity of the position I was in, not really knowing what to do next. I stood in the shower and we carried on laughing as I peeled the layer of hydrocolloid off my broken skin, with intermittent yelps of pain between the laughs.

It hadn’t worked out as well as I’d hoped. it had been semi-waterproof, but  had definitely cut the strips too big. I realised too, that my skin was so sensitive, I would need to put the Mepilex on under it, to prevent it sticking to my skin. It was a little disappointing, but for a first go at finding a longer term solution, it wasn’t all that bad. It’s hard to know what you are supposed to be doing with all of this new technology, even if it is just a glorified plaster.

One down, many more dressings to go! Allez!

Advertisements

I am three weeks into my diet now. I would love to say it has been easy and I am enjoying all the lovely recipes of nourishing food that are out there, but it’s not true. I am STARVING!!! Well, that’s a little bit of an exaggeration, but I am having super intense cravings for cakes, bread, nuts and well, anything and everything I’m not allowed. The only benefit I can see right now, is that I have lost about 7 lbs. I am one grumpy bitch, my skin is bad and I have low energy levels, or low motivation – I can’t quite decide what it is. It’s been hard on everyone and I really need to pull myself out of it. Quick. But how??

I am really enjoying my main meals, but am finding it hard in between meals. I don’t usually snack that much, but since starting this AIP, I have been really hungry between meals. I guess if I asked a pro, they would say I’m not getting enough nutrient dense food in my diet. I’m so over it all though, I’m struggling to find the motivation to cook up some lovely stuff to see me through the day.

I have succumbed and bought myself some toasted coconut flakes. I am assuming they are not good for me or my diet, but they’ve got to be better than dark chocolate, almond or any of the other scrumptious foods I want to stuff my face with.

Lets hope my mojo comes back pretty quick, because I’m becoming seriously unpopular in this household!

Valentine’s Day and some crafty distractions.

Happy Valentine’s Day! I have had a busy day, finishing off presents and planning after school painting for the girls. I love making stuff, but it is pretty hard to fit it all in whilst entertaining a toddler! Plus, she is the lightest sleeper ever, so when she goes up to bed, I have to craft as quietly as possible. God, the sewing machine seems so loud!! I’ve finished the heart cushion and did some chain stitch letters on it. This is my first time ever, so it’s not been perfect. Plus the added pressure of doing it in a limited time and without making ANY noise has made it a bit harder still!

I blame the wonky stitching on Nina…
My little present for Ty is made last minute, too. I rummaged through my leftover supplies from Christmas, got the trusty glue gun out and voila! An easy and quick little gift, that I know she will love. She likes anything mini (don’t we all?) and loves little notes, so I’m on to a winner here!
I pick Ty up – she loves her gift. We all get down on the floor and make hand prints in paint on a big heart that I’ve drawn. I always love the idea of doing stuff together, but it’s always so much easier in your head isn’t it?? Well, the girls enjoyed getting mucky and we have a handprinted heart, that is “made with love, not precision”!
Daddy comes home with an unexpected bunch of roses for moi! Aaaw! One for each year together (that’s four whole years – a long time for us novices) He wanted to buy a nice wine, but we’ll have to wait 55 days at least for that, not that I’m counting…
Well, today has been busy and challenging, but warm and fuzzy at the same time. I am eating enough good food and feeling less pain. Just how I like it.

Tomorrow is Valentine’s Day. We’re not big on Valentine’s Day, but I like the idea of celebrating being together. We normally save our celebrations for our 4 year anniversary, which is in a few days time. However, I have always celebrated it with Tyla and so we’ve decided to make Daddy a little present and I’m going to make her a little something too. Time is pretty limited, as we only have the time when Nina sleeps to really get the craft stuff out. We are going to make him a little heart shaped cushion and I haven’t decided what I’ll make Tyla yet.

We find one of his old shirts and I unpick the sleeve. I have drawn a heart template and Tyla traces it twice, on two pieces fusible web. Now, I have the idea of a hanging heart, but I still can’t figure out how you stitch in the ribbon to make it hang. A few clicks later and Google shows me the technique. We cut a small piece of ribbon, I stitch the two pieces and the ribbon together, leaving a small gap to turn it inside out and then it’s time to get the baby up. I’ll finish it tomorrow, when Tyla’s at school.

I am hungry today. Probably not really, but I am craving sugar quite a lot. I didn’t think I was so carb addicted, but it turns out I was wrong. I am trying to hold it together, but when I am subject to a normally manageable stressors, today I am really snappy. Poor kids!

We head out to the library and Tyla entertains Nina in the kiddies’ section, while I get us library cards. It takes me about 20 minutes or so, and Tyla is just an angel, running around after Nina the whole time! They want proof of address for me and the kids, so I have brought all of my chequebook (with my name and address on it) our passports, Tyla’s school insurance letter and our application for Nina’s childcare confirmation letter. We all find some books, albeit with Nina head butting and squealing her way round. There is a good little English section here for Ty’s age group and also for Nina. I find some sewing books in French, which have lovely pictures. We check them out and, phew, we have achieved something. It’s never the enjoyable, heart warming day out you expect it to be, but it’s something! I pick up my prescription for my homeopathic stuff and some more dressings and I collect Ed’s parcel from the Newsagent collection point round the corner.

Today, life is good – stressful, but successful!

The sun is out – hallelujah! I had not realised how badly affected I still was by the lack of sun. I was diagnosed with Seasonal Affective Disorder many moons ago, but as I haven’t felt depressed for a long time, I assumed it had kind of gone away!

Today is Day 3 of AIP. I am having my sautéed courgette, mushroom and onion breakfast again and then I am prepared to take on mother and toddler group, the Mairie and shopping. I feel alive, energised and able to take on the world. And all because the sun is shining.

Lets hope it doesn’t rain!

Ok , I’m back and it’s raining. Still, I think a morning’s sunshine has given me the boost I needed. I did see some daffodils out -another thing that always cheers me up. On the Isle of Wight, there’s a bend coming into Havenstreet where hundreds of daffodils are planted on the bank. For all the years I worked in Newport, my spirits would be lifted to see the first ones peeping out of their lush green beds. It was more symbolic for me – spring, depression lifting and new beginnings.

Tyla has a day off today, as the teachers are on strike. They are being made subject to reorganisation of the system, which could involve longer hours, a different schedule and for Primary School teachers to work Wednesdays. One of their reasons for striking, as written on the letter we were given, is that proposing primary school children attend school on a Wednesday will interfere with their “biological rhythms”. Now as an English mother, who worked pretty much all of Tyla’s early years and where all children aged 4 and up attend school daily, I’m not sure how I feel about such a claim. Also, I am not sure that we have any po-school biological rhythms, whatever age we are. I certainly didn’t!

Whilst I’ve been at playgroup, Tyla has folded away all the washing; hung out the wet washing and completed all kitchen cleaning duties. People say we are lucky that we have a well behaved child. Lucky??! It most definitely is not luck! It has been months of blood, sweat and tears to get her this disciplined! If it weren’t for Ed, I would still be struggling on, doing all the chores myself, not wanting to “burden” my child with anymore duties. However, now the hard work is done and she does most chores with little/no grumbling, I can totally see the benefits of making your child independent and a team player around the house. In fact, Tyla will often say she is proud of the fact that she can clean up a kitchen and do the washing. We’re playing the long game here!

Tyla tells me there is a new girl and tells me she is “out there”. Tyla has already taken a dislike to her, especially as the new girl has befriended Ty’s current bestie, Maelise. She explains that this girl has what the French call an “air du mal”. It’s a good opportunity for discussion baout how new starts are hard for all of us and that we express our nerves in different ways. Some people come across as overconfident, others are shy and then some pitch it just right, but are no doubt still feeling just as nervous as the others. Tyla gets this, but I know she is still not convinced!

Tyla tells me that today she misses her friends and can’t wait to see them Thursday so they can chat about Valentine’s Day and see who has been given what. This confirms three things: 1) Tyla does have friends; 2) her French is good enough for her to be bitching about the new girl and 3) bitching at any age, in any language brings people closer together!

So, the sun is back out, I have a ton of stuff to do and I’m ready for it – wooohoooo!

Today is Day 2…again. I am back on paleo, stricter than ever and following the autoimmune protocol – or what I know of it at least. I have no excuses left, just pain and more pain. I feel stressed, anxious, broken, but weirdly motivated. I have given up dairy, eggs, potatoes, tomatoes, chilli and all types of peppers, certain other spices and all refined sugars. I have reread Primal Girl’s blog http://www.primalgirl.com/2012/03/10/primalgirl-opens-up-hidradenitis-suppurativa-part-2/ and am determined to see if I am eating anything that triggers it. I know that it has improved in terms of lower inflammation and the spots leaking much quicker than before. This is partly down to my diet, but hey, it could be the homeopathic treatment?? Who knows?

I’m normally quite good at diets. My family would say that’s an understatement and that once I set my mind to something, it’s going to get done! The problem I have is other people’s opinions. I’m fine eating anything Ed or I prepare, but eating at other peoples’ houses is a whole new minefield. Most people will not accept a polite ‘no’ to their offerings. They might say, “Just a little bit won’t hurt” or “you should stop that diet before you get too thin – have some of this”. Even the ‘taste my wares’ guy in the supermarket looks offended when I don’t want to try his delicious je ne sais quoi! Now, I have started saying that I have a skin condition which is affected by food, but this is fairly complicated and may lead to further discussion. I’m sure that when they’re eating, people don’t want a full rundown of the pus and inflammation that comes with HS – especially down in your nether regions. So, I’m learning how to pitch it right. ‘I’ve just eaten’ or “no, but I’d love some more of that salad – did you make it?’ or any other diversionary tactic I can think of!

I am ever hopeful, as I believe you have to be with any kind of long term condition. I will stick to my diet and see how it goes. Failure is not an option!