Sunday, 7 May 2017

The past few months


I've not written a personal post for quite a while so I thought I should check in with you all and say hello!

I've been feeling quite up and down mood wise over the past few months - mainly because of my health. It's really been getting me down some days...

In January, I spoke about how my skin had changed so much and that I'd been getting rashes on my chest and shoulders. Well, I hadn't really paid much attention to it, but I started getting rashes on my face, across my cheeks and nose, and my face would burn up and go bright red and blotchy with it. Some days, I couldn't even cover it with make up. Now, a little background before I continue... Last year I had Pityriasis Rosea which is a skin condition caused by a viral infection. I had a red patch form on my rib area and I didn't really think too much of it but it grew and grew and became incredibly itchy. I thought it was eczema at first but eventually went to the doctors and within seconds was diagnosed with Pityriasis Rosea. Anyway, long story short, it lasted a few months and in that time it got much, much worse! I was covered in bright red, circular patches from my armpits down to my calves. It was beyond hideous and the itching drove me round the bend! I have no pictures of it because I was so embarrassed by it - it really looked like I had some awful disease or something! Luckily it cleared up but around 2 months later I started getting this rash on my chest and shoulders and automatically started Googling whether Pityriasis Rosea could come back again. That's when I first saw the rashes caused by lupus. At the time I didn't have a rash on my face so it wasn't something I looked at in detail.... But it was something I thought about when a month or so later again I started getting the rash on my face. I started to wonder whether it was a lupus rash and since the pain I have from my fibromyalgia is mainly in my hands and feet, it all started to make a bit more sense. I went to see the doctor and after a lot of tests, everything came back clear. This was the third lot of testing in as many years that included a test for lupus and every single one was always negative for everything, hence my fibromyalgia diagnosis. I was relieved because I obviously didn't want to have lupus, it's a pretty major condition and can be life threatening, but I was a bit flummoxed. The doctor didn't have any other explanations for my facial rash and agreed on everything I was presenting. She said the best thing would be for me to speak to my Rheumatologist about it and I see him in November so for now I'm just keeping an eye on things.

... However, I've noticed something since then about this rash. It's been happening more frequently since I last saw the doctor and there's one thing it correlates with - my endometriosis pain. Oddly, whenever my endometriosis pain flares up, be it randomly or before/during/after my period, this rash appears. Now, I've not spoken to the doctor about it (yet) but I've been doing a bit of reading because I've never heard of women with endometriosis getting rashes, but, guess what, there are women out there who have the exact same thing! Some women's stories are almost word for word the same as mine - this rash always comes back when their endometriosis pain is flaring up and then goes again of it's own accord! I mean, how weird is that!? I don't think I've ever had this before, however, I've read some old posts and found that at times I was complaining about something similar so maybe I have had it before. It's not an allergic reaction because I'm not using anything new (I thought it might be due to a new moisturiser but looking back it appeared before I started using that) and I haven't been regularly eating something different. But it's odd. Have any of you ever had a rash on your face that seems to appear when you're in more pain with your endometriosis? Please get in touch if you have! It all sounds a bit crazy but since seeing other women talking about the same thing, I'm really starting to believe it might be related to it. 

Anyway, that was a lot of talk about rashes! I hope I've not made you all itchy now!

While we are on the subject of my endometriosis, things have still been getting progressively worse month after month. I've been feeling a lot of new pains and adhesion type stings - more around my diaphragm area (where I already have endometriosis but have never felt anything other than the pain in my shoulder) and A LOT around my c-section scar. I knew that was coming though! I've also, been wetting again. I'm so embarrassed by it but I've spoken about it on here before so it's not a new thing. During my period last month, the point finally came where Paracetamol weren't doing anything for me. I was in so much pain. I booked a doctors appointment but had to wait almost a month for that, so I tried taking some Dihydrocodeine that I had left from when I had my c-section. I knew it was safe to take while I was breastfeeding so I tried taking one 30mg tablet but unfortunately it did nothing, so the next day I tried 2 30mg tablets and yeah, to say I was spaced out is an understatement! I couldn't feel my finger tips!! It really helped the pain but I couldn't face that spaciness again so I knew I had to get something sorted in preparation for the next month.


I saw a doctor on Friday about it and he's given me Dihydrocodeine (30mg) again but said this time that I can take it up to 3 times a day and also take Paracetamol as normal alongside it. So, fingers crossed, this month will be a lot easier to deal with. He did speak about a new treatment option for me also though. He asked all about my pain, where it was, how my periods were and how long they lasted - I thought he was checking to see if I did actually have endo or something but it looks like he'd had a good read of my records before I walked in (something I've never felt has been done before) because he was really clued up on it all. I know, unusual ha!? He said he really didn't want to just give me painkillers because they would only mask what was actually happening so he said the best thing to do would be to stop my periods all together and suggested I have the implant. Now, I came off the (progesterone- only) pill about a year ago and I had pretty much vowed never to go near any contraceptives (besides condoms) ever again. But he really thought this could help. We spoke about how I have had breakthrough bleeding with everything else I've tried, how I had such a bad time with the Mirena Coil and how I struggle with having something implanted in me that I can't just take out myself when the going gets tough. But he reassured me on all bases - the likelihood of having breakthrough bleeding with the implant was much, much lower than with the other things I'd tried and said that I could have it removed at any time if I wasn't happy. He then went on to say that he wanted me to try something else when I finish breastfeeding, something I would have alongside the implant, but for the life of me I can't remember what he called them. It had something to do with prostaglandins and how your blood cells flatten. I'm sure he called them 'prostins' or something and said they were like aspirin but, I cannot remember at all. Danny is always telling me off for doing this! I start a story and then can't remember the end! But yeah, I can't have them yet anyway so I'll keep you posted on that one. So now is my time to mull it all over and then if I want to go ahead with it or just talk it over some more then I need to see another doctor and it will all go from there. One thing I am really concerned about is my bone health because I remember my rheumatologist saying I needed to have periods to help my bones and I've read also that this isn't something you should be having if you have osteoporosis. So, that's something that would need to be discussed - maybe just on that alone it would be off the cards. But anyway, ladies, endo sisters, have you had the implant? Has it worked for you? Did you have any breakthrough bleeding? I want to know good and bad experiences so please get in touch because at the moment I really have no clue on what to do. He really seemed to think it would all help though, but he did say if it didn't then surgery would be the next step. For the first time in years, I left the doctors surgery feeling really positive! I wish all doctors made you feel this way!

As for my fibro - nothing much new to say. The fatigue is still terrible to the point where it's rendering me useless for days on end now. My hands are still incredibly painful - some days I will drop things repeatedly because of it. I bought myself this amazing little contraption called a Popsocket to help me grip my phone as I was dropping it constantly and wasn't able to type anything while gripping. It's such a simple little thing that you stick to the back of your phone but I'm overjoyed with it!! It wasn't until I bought this that I realised that I've changed quite a few things over the years to enable me to use them. Our hoover is a cordless one and super light and our kettle is now a hot water dispenser that you don't have to pick up. I hadn't really thought about it until now but I've been buying things based on my capabilities with my health for a long time. Anyway, back to my fibro... My feet still ache like I've been wearing heels all day and then stood in a fire pit and recently, my knees have begun to play up again, which is the issue that first took me to the doctors about it all back in 2015. Some days I've really struggled with moving about and it has left me a bit surprised at how incapacitated I've felt on those days. I think you kind of take it for granted, even when you have something like endometriosis that's concentrated to (more or less) one area of your body, and then you have something go wrong with another part which really stops you moving. I think I need to get myself some knee supports because they really have hurt so much some days. I spoke to the doctor about it on Friday and my Amitriptyline dosage has now been put up to 20mg per day so I'm hoping that might help things a little.

So, yeahhhh, that's been my health so far this year. I guess you can see why I've been a bit down about it all now. I would say I don't know whether I'm coming or going with it but it's more that I know exactly where I'm heading and I don't like it. I've had quite a few "why me!?" days and days where I've wished I could just be well again. But, hey ho. I can't change the cards I've been dealt now can I... Can I!?

I'm purposely not mentioning anything regarding my acne on here as I've written a long overdue update on all that for you and hopefully that will be on here this week too, so keep your eyes peeled!

We've been doing really well on our diets. We started the Slimming World diet on 14th January this year and so far I've reached and surpassed my first target and have lost 1st 4lbs. I have just 3lbs to go until I reach my second and final target! Danny has been doing brilliantly too and so far he's lost 2st 6lbs and has passed his first target. The plan once we hit the next (the final) targets is a big pizza! I'm not sure it's the best motivation while dieting to be thinking of pizza all the time but hey, it's kept us going! Our eating has become much better and we both eat a lot more fruit and vegetables than we did before. We will definitely take a way a lot from this diet once we have finished and it's been so easy. Don't get me wrong, of course there has been days where we've both wanted to give up and generally, couldn't be arsed with it, but we've got past it and seeing a loss each week has definitely spurred us on.

I don't want to tempt fate, but I mentioned previously that I'd had a "Capability of Work Questionnaire" through from the DWP in January... Well, all I've had from them since I sent it back is a letter detailing my payments. I'm not saying any more because an assessment letter will probably pop through the door tomorrow now knowing my luck!

Tomorrow it's our 7 year anniversary and we are going away for a few days (with Hunter, obviously!). We are staying a bit closer to home than usual but we cannot wait to get away for a few days and relax a bit. I just hope it doesn't rain this time like it did when we went to Dorset last year!


I've realised I don't tend to talk that much about Hunter on here but I mention him so often on Instagram that if you follow me there you'll see what a happy little chappy he is anyway. He's definitely hit the 'terrible two's' over the last few months and we both found that incredibly difficult when it started. However, we've found new 'coping' techniques and so far they've been working great and I think they've in turn helped Hunter because the tantrums have been few and far between... For now anyway! We've recently registered him for pre-school which he'll be starting in January next year and we will get 15 hours government funded - which covers the time the pre-school is actually open for anyway. It means I'll have 3 hours free every morning next year which will be great for me to get on with EMLWY related things or selling things to raise some more needed pennies! I'm going to be a wreck when I take him there though. He'll only be a 10 minute walk away but gah, I don't even want to think about it right now! He loved it when we went to have a look around though and we have some induction days in August (should he get in that is as we've not heard back yet) so hopefully that will make things a little easier for me! Time sure does pass quickly though. Breaks my heart a little whenever I think about it! I miss him being tiny so so much. I'd give anything to just have one more hold of him as a tiny newborn.

I have to admit, babies have been on my mind a lot recently. I'm not broody and I think we are both so, so happy to have Hunter and enjoy just him and spoil him rotten... But that doesn't stop me feeling sad and a little empty. All the girls I spoke to online while I was pregnant are either pregnant again, have already had a second child or are planning for another child in the future and it's been very difficult to see that and think that we won't have that. I know a lot of you might be thinking I'm being silly as I have Hunter now, but it's just a natural feeling that you can't control. Being a woman, I should be able to just make babies and I can't. And I don't know if I'll ever get past that feeling.


Oh, there is one other thing to mention that you might have already seen if you follow me anywhere else... My Baby Blasto tattoo! The very lovely Fiona Lewitt over at Black Market Tattoos kindly chose me as a competition winner and my prize was a free tattoo!! I have been wanting our Blasto tattooed on me since the very first moment I was given that photo back in 2014 so to have him with me everywhere I go now is just the best. Fiona, I still cannot thank you enough for this!!

Anyway, I think that about covers everything folks! Hope you are all as well as can be and kicking endo in the bloody butt!

S.
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