Tag Archives: autoimmune disease

Hemp, miracle skin product!

Just a quick update post, and two products I have been loving!!

So I haven’t been this happy in a long time, I’ve had great news, last week I had a joint appointment with my Dermatologist & Rheumatologist and I can finally say in 5 months time I will be officially off of steroids! HELL YEAH!!!! You have no idea how excited I am about this, it’s been a long time coming, plus that means I can get my pre-steroid body back, having had my weight fluctuate like crazy over the past few months (from jumping up & down doses), oh it’s going to be so good, however I am certainly not looking forward to the withdrawal symptoms, but never mind.

My dermatologist thinks that also in this time my skin will completely clear up, which will be a god send as it has been something that has been causing me lots of problems, now don’t get me wrong it has already cleared up tremendously and what remains most now is scarring, but that should be gone soon, I’ve been using two different hemp products and I would recommend these as they are amazing!

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 Hemp Soap On A Rope £6.50

 

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Amir Hemp Seed Oil Moisturizer, I bought this in TKMAXX for around £7 but you can order it from Amazon US for around $40 which I will be doing when mine runs out because it is that good! 

Those two products are so worth the money, highly recommend 5*

So that’s it just a quick update post, what skin products would you recommend?

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Tapering steroids

As if being on steroids (Prednisolone) was bad enough, tapering off of them is being a bitch! Oh my god, it’s a pain in the ass, moon face is in full swing… did I have it when I was on a higher dose? Nope not at all, reduced my amount and BAMN! Hello plate face! Since reducing as well I’ve gained weight! Like wtf! I liked being the size I was, I was actually happy with it for once, but not anymore, which means I’m probably going to push my body to the limit to loose the weight and will probably come out of remission *Insert eye roll*

Honest to god, you can not win whilst you’re taking steroids, since reducing, the aches and pains have started again and I feel exhausted all the time, even the easiest tasks seem impossible! The problem is though with the new year just a few days away my mind is full of optimism and is rearing to jump into the new year head first, but will my body be able to keep up?

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That’s another thing, the mood swings, fuck me its horrendous, one minute I’m fine, next I want to either bite someone’s head off, or I’m crying into a tub of ice cream, it’s like being a teenager again, like when all your hormones where trying to balance themselves out, OR I won’t have mood swings and I’ll just be stuck in a rut of being a cold hearted bitch that gives zero fucks to anything or anyone.

Now I may seem all doom and gloom, it might have something to do with the fact that I was at a family party last night,  got very drunk (not recommended either whilst on medication Giant fucking slap on the wrist to me) went to sleep at 4am was up at 7am, so I’m knackered and I also have the beginning of a cold, which I feel may turn into tonsillitis or even worse the flu, which as you know if you have an autoimmune disease, normally you’ll end up in hospital for those two things, joy of joys. So yes as you can imagine, I’m one cheery fucker today!

But surely I’m not the only one whose experienced worse symptoms after starting the tapering process of steroids, right?

If you have I would love to know because right now I feel as though I’m loosing my bloody mind!

Dermatomyositis you haven’t beaten me yet! 

Coming to terms with being ill for the rest of your life is weird, but what’s weirder is other people’s reactions to it, yes I’m ill, and some days I don’t want to do anything but it’s not like I’m living in a fucking bubble, I can still pretty much do everything I used to, but I just get tired quicker, I can still go out and have fun, I just need a little longer to recover that’s all, or on the other hand I have people that have no fucking idea what I have, or haven’t even tried to learn anything about it and therefore think I’ve made it up, it’s odd, especially having something so rare, I have Dermatomyositis but my case of it, is even rarer because I’m 22 and normally you have it as a child or a lot later in life, so yeah bit of a freak of nature here 😂 but fuck it, I don’t really care, it makes me who I am, and I just have to accept that.
However there are a few things that do make me laugh about being ill and that is the same old shit people ask you no matter how many times you tell them…
“Is there anything they can do about it?”
Nahh I’m just taking a shit tonne of steroids daily just for the sake of it…
“Is there a cure?”

Well seen as they don’t know how it’s caused, or what it really is in full, I doubt it…
“How long will you be ill for?”

Your guess is as good as mine, but seen as there’s no cure, I’m gonna go with forever.
Yes I may seem sarky about the whole thing but two years of the same questions start to do your head in, it’s kind of like when someone has a baby and all anyone ever does is ask the mother questions about the child and nothing else, that’s kind of what I’m going through, no one ever seems to talk to me about anything else other than my illness, it’s aggravating, I didn’t suddenly just shut off and become someone who can’t talk about anything else but being ill… this post is very “ranty” I apologise for that but god it’s annoying haha and I do see I’m being a hypocrite by writing a post about being ill and whining about how that’s all people want to talk to me about but yeah, we all need to rant sometimes and this is just my outlet for it!
All I’m saying is stop treating me like I’m useless, because I’m still the same person, just a little bit unwell and that is all! 🙂

Living with an autoimmune disease 

(Started writing this as kind of a motivational/informative post kind of ended up a rant, sorry about that!)

A little over a year ago I was suddenly struck down with severe weakness and tiredness, to the point that if I were to sit on the floor I could not get up on my own, at first it was very confusing and frustrating because even getting up from a chair was near on impossible, feeling as though someone was pushing me back down, but physical weakness and uncontrollable fatigue aside, the hardest thing about having an “Autoimmune Disease” is you feel pretty much alone, and when the people around you don’t really understand what it is you have or why you cant just “stand up” it can get very stressful and depressing. I’ve had to deal with being left out of things like going to the beach, camping, and sports because I physically can not do it, I’ve lost jobs and now am unemployed because I physically can not work, even though I look quite well on the outside, inside is a daily struggle of being in pain and tired all the time!
Now… Autoimmune diseases are a very broad canvas, and I personally do not know which one I “specifically” have, but I do know it is non life threatening, but I will have it for the rest of my life, and let me tell you the prospect of that is so friggen scary! I do not know what triggered mine, could of just been my age or could have been from a fall I had a while back, I went through a faze of randomly feeling disorientated and just falling over which my now very scarred up knees have not thanked me for, but… that being said medical professionals do not know what causes these autoimmune disease and their is no “cure”.

Also I lost over 3 stone in 6 months and am still loosing weight now, sounds great doesn’t it, but its really not, its quite scary when you’re not yet diagnosed with anything.
I don’t really know why I am writing this post but I just hope if someone else who has a autoimmune disease reads this they can realise they’re not alone. It has taken me over a year for a doctor to actually take me seriously and get me the help I need, I’ve been told it was just all in my head that my muscles where working fine and there was no reason why I couldn’t move, I was put through Physiotherapy and told to do exercises I couldn’t do, and then get moaned at, at my next appointment because I had not improved. So many blood tests I couldn’t even tell you how many it was I actually have had, and put on various medications which as you guessed did nothing at all.
My point is… If you don’t feel well keep on and on until you get the help you need, I have to have a muscle biopsy at some point in the near future and then steroid treatment (not looking forward to that) but after over a year of being ill it has given me hope that I can get better well into “remission” as they call it, and my life will improve.
(I also wanted to do this post as a reasoning as to why I do not “work” in the normal sense as I have had a few questions on this on other social media sites.)
So yeah… If you have an autoimmune disease or any other medical problem that causes you to not be able to work, (in the conventional sense) what do you do for a living, or do you have any tips on how to make life easier?

I’d love to hear your stories too 🙂

NicoleeJayne

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