Christmas, hospital and Charlotte’s new hair.

Christmas was lovely and I took a few days off the sugar free. In fact I took 5 off, not because I was stuffing my face with quality street on an hourly basis but I had a few meals out and social engagements and really don’t want to that killjoy demanding sugar free this and that. I’m happy to pay the penalty in these circumstances and will be popping £100 into the charity pot. Generally I’m struggling with this sugar free challenge, it just adds such an extra element of hassle into daily life which is starting to wear me down. I will stick with it till June though, it’s not that long till the year is out. I’ve said it before but last year’s CrossFit challenge was so much easier.

Charlotte update – she’s doing ok, chronic fatigue is kicking her arse as is postural orthostatic tachycardia syndrome. It’s really difficult for her. She also has an operation coming up in March which she isn’t exactly over the moon about. She has a few tumors which the medical people are certain are benign but they need to come out, just to safe and because them being there could make it more tricky to spot something serious. We were at hospital yesterday arranging this.

Another day another waiting room

She has had a few surgeries across her life and always has a dreadful time with the cannula and with throwing up after. Oh my is she sick afterwards, violently, for hours and they’ve tried everything to prevent/stop it. Nothing as yet has worked. So she’s not a happy bunny and left hospital quite stressed. We did the sensible and mature thing and went home to shave most of her hair off and bleach what is left.

Punk rock girl!
She’s so cool that kid

Other than that I don’t think there’s much news, my eldest is moving into a place of his own which is very exciting, we adopted a cat we literally found in our bins, half starved poor thing. Seb moving out and the car moving in aren’t connected though swapping kids for cats could be a plan.

Bertie the bin cat

As always if you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

Healing and sugar free

We are still waiting for appointments for my daughter, in the meantime it’s life as normal and trying to not worry.

Today’s sugar free year observation is on healing, as in the physical kind. I’ve never had issues with skin healing in fact I’d say I’d always been a pretty good healer. Now my bodies ability to repair tissue is excellent, my hysterectomy incisions knitted over in a matter of weeks, I had no bruising in fact I bruise very little these days. Then there’s the tattoo I had done a week ago, it’s my 6th and 4th big one so I’m fairly use to the tattoo healing game. This one has healed over in 8 days, all scabs fallen off all flakiness gone. There’s still a little itching and se raised areas but to look at you wouldn’t think it was quite so new.

What has caused this improvement in healing I can’t say, it could be the lack of sugar though it warrants saying I never had a typical western diet of junk food so never had a high sugar intake. Plus although my “added” sugar intake is zero my actual sugar intake (from fruit and other whole food sources) is the same as it ever was.

Perhaps that’s the reason, when I cut out all the extras I replaced them with fruit, fresh peas and other fruit and vegetables. My fruit and vegetables intake is higher than it’s ever been at around 8 to 10 portions a day. Whatever the cause is it’s certainly a happy side effect.

Waiting for consultants- Cowden Syndrome sucks

Sorry for the long delay in blogging. I’m not feeling especially chatty at the moment, my daughter has some breast issues which I can’t discuss in detail but could range from the very serious to the not at all serious. She also had a bleed in her retina which again could range from serious to not serious. We are waiting for appointments with consultants to try and establish what is going on. I hate the waiting, I hate Cowden Syndrome, I hate that we get to a period where things seem calm and then she has a whole load of new things to worry about. I hate the fear. I hate that she and I are both looking forward to seeing the breast surgeon as we can at least then have the conversation about how old she needs to be to have a double mastectomy. I hate that at 15 she’s in a position where she’s looking forward to such a major surgery. I hate that once again we are heading into Christmas worried sick. This is the reality of Cowden Syndrome.

I’m still persevering with the challenge aside from a cheat day at the cinema that my son offered to pay the penalty for. It’s important to me keep fundraising, it’s important to me to think that one day there will be a cure or treatment and she can just live her life, one not without worry but with normal worries.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

More hysterectomy tales, a nasty illness, adopted cat and a cheat day!

It’s been a tough month since I posted last. I was coming along amazingly after the hysterectomy, walking every day starting to get on with life. Then two weeks after I came down with some form of illness. It’s hard to say if it was a virus plus an ear infection or a really serious ear infection. All I know is that for 6 days I did nothing but sleep and throw up and my balance was so off moving was like I was drunk. I was sleeping for around 18 to 20 hours a day, the time I wasn’t asleep I was curled up on my left side feeling so unwell I was wishing I was asleep. It was awful, By day 6 my husband was so worried that he called an emergency doctor as standing up involved falling over basically every time. Because I had had an operation so recently she too was concerned in case I had a sepsis brewing somewhere. I ended up in hospital. Thankfully they were able to establish that I was in no danger, they also figured out that as part of what was going on my vestibular nerve in the inner ear had been affected hence the inability to stand or move. I have had a chronic ear infection for months so it’s likely that had spread. During that week literally the only thing I could hold down was a couple of slices of white bread a day. I must admit I was not considering the challenge at this point, my body was exhausted from surgery and then illness. I think this is an allowable time to not try to read labels.

After antibiotics the worst of the illness seemed to clear up though my inner ear is still affected, I was back at work during the tail end of feeling awful which was around 4 weeks post op. I also had a phd proposal to get in to the university within 5 days, a completely new one I had not even started. By the end of that week I was exhausted and by the end of this last week with work, working more on my proposal, exercise and homeschooling I’m pretty exhausted too. I’m glad I’ve managed to get back into gentle exercise at the gym and running (run/walk/run), this past week I had 2 gym sessions and 2 runs which 6 weeks post op I am happy with.

I am functioning ok during the day but by the time my day ends at around 7 and I have time to sit down all I want to do is go to bed and I end up asleep by 9. It’s hard to tell if the tiredness is a post infection issue, a post op issue or a combination of the both. I am hoping it will abate soon as my life is not one that has many opportunities for rest which makes dragging myself around slightly miserable.

Monday ended up being a cheat day, I had Charlotte at the hospital in Newcastle when all of a sudden I came over so shaky and weak that I had to have some form of instant energy. I have paid the £20 fine into the fundraising in accordance with my rules!

Oh and we have adopted a stray we are calling Bertie, when I say adopted I think he just decided he lived here.

My hysterectomy and oorphectomy experience – part 2

Day 11 – Generally feeling good, I slept better last night. My abdomen is still tender but ok. I’m now working on walking upright again, with abdominal surgery there is of course a natural need to hunch a little for the first few days to protect the incisions. Now I’ve healed enough to want to work on posture and holding my core in while I walk. I’ve been doing pelvic floor exercises since day 3, now I’m adding in gentle core exercises such as bridge, single leg table top and double leg table top. I’m still wearing compression socks but have some fun ones now.

I have a very definite headache but I have a feeling it’s not connected to the hysterectomy and more likely connected to middle son who has been coughing his lungs up for the past few days and complaining of a sore throat. Without sounding too unsympathetic, boy the last thing I need right now is a cold. Coughing and sneezing would not be good!

My biggest concern right now is when the vaginal stitches dissolve, the consultant mentioned that there is 1 to 3 % risk that when they do a scab can fall off from the incision that causes serious bleeding. It’s around the 10 day mark the stitches come away so round about now! After our past few years of medical rubbish the small risk seems huge!

Day 12 – I found a large lump in my left breast last night, around 2cm that was a hell of a shock. Because we are with Bupa I’m seeing someone this afternoon. Back to the hospital it is then!

Day 12 – later that day, thankfully just a cyst a 3 cm one! The guy drained over 7 ml of ick from it. Ew.

Day 13 – Slightly tired today, but I was invited out for lunch at a friend’s house with a group of fabulous women. I feel very blessed to have some genuinely amazing women in my life. Having strong loving women in your life makes such a difference. The rest of the day was cooking, walking then resting.

Day 14 – I slept better than I have been for a while, I only woke up a couple of times to pee. I’m assuming the peeing a few times a night is a combination of pelvic floor damage and low estrogen. I woke up feeling sick though, I hope it’s just a thing and not that I’ve picked something up!

My abdomen outwardly continues to heal well and the incisions are slowly fading.

Day 15 – I started spotting a little, nothing dramatic and it is around the time that stitches would be dissolving and it can happen as part of that process. I’m watching and waiting, if it gets worse I’ll of course go to a doctor.

Day 16 – still spotting and my waswomb (the bit where my womb was but no longer is) is sore today. I think it’s part of the healing where nerves are waking up. I’m feeling tired generally and my joints are aching, I feel quite emotional today also, like I’m on the verge of tears for no reason. I’m not sure my hrt is quite right. Really not feeling enthusiasm for life today! I’m seeing the hrt specialist the week after next, hopefully he will be able to tweak things to get me back to feeling normal. My husband is away for work and I’m very much feeling the pressure of needing to be “normal” and keeping on top of things when really I’m very far from normal as yet.

Sugar and booze wise I’ve stuck with my commitment to this fundraiser even though god I would love to have an easy option right now food wise. Or an eclair. Like I really want an eclair so badly right now.

Cat is helping by trying to trip me on the stairs.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens