It's time for the weekly installment from lupus land....I think lupus land is going to be my favorite phrase this week. Here we go right into another flare up! I am pretty sure that this time it is the lupus flaring up and not the scleroderma,but who knows. Whatever it is I have woken up to a familiar burning pain in my face that can mean only one thing.....the butterfly rash is back. Firstly and off topic...why would you name an awfully painful rash after a beautiful butterfly...yes I know it's the shape of it...but still it is a bit mean on the poor butterflies. Here is the only photo I shall be taking of my face like this....I hate it but it's important to show the world what it's really like!
Before
After
Anyway, back on topic. As you all know, I don't hold back here. I will tell you what it is like and right now it feels like my face is going to catch on fire. My cheeks hurt to move, making talking, smiling and even eating a tremendous chore. Then there is the fact that I know that the rash never comes on its own, it likes to bring along some friends to the party...namely pain, swelling and fever. So I know what I have in store for me for the next few days...hopefully only a few days. The question is...what can I do about it?
Steroids are my first go to...
As we know, steroids such as prednisone are great for taking down swelling and combating pain. So my first stop is to the hospital for a shot of steroids. I get a shot because I prefer them to upping my usual medications, plus this works quicker and will reduce the heat in my face within a few hours. This is always my first point of call to stave off any flare ups, I cannot afford to get ill right now....there is work, there is moving house (another story for another day)...there is just NO time in my calender for a full on, flare up situation. The steroids will be enough to give me a few days for the next steps of the plan.
Straight to bed today and no excuses.....
Oh I do enjoy a drink after work, it is a great way to round off a busy day. However not today, for today I will mostly be found in bed. The only time I will not be in bed I will be seen wandering round like a zombie. Bed rest is number two on the list because although the steroids will work, they will not give my body any rest, instead I am choosing to work in conjunction with the steroids and let them do their job whilst I put as little stress on my body as physically possible.
It's days like this where I will conduct my life from the safety of my bed...I will eat there....watch TV there...read my book....chat to friends and family etc. Allowing my body to heal before I take the next step.
Lotions and potions aplenty.....
(warning calamine lotion does not make you look like this...unless you are this beautiful in the first place...lucky you)Next up is the cosmetic side of a butterfly rash. Let's face it, they are not the most attractive thing. I either look like I have had far to much sun or had far to much to drink.....and with my pale skin the redness stands out like a sore thumb. So I shall get to work on my face, starting with calamine lotion. Remember when you were a child and you got the chicken pox, well your mom or dad will most likely have lathered you in the disgusting pink gloup that is calamine lotion. Disgusting it may be, but it is brilliant for taking away the itching and burning from a malar rash of any kind.
Once it has calmed down enough then I will need to keep my face well moisturised to stop the dry skin from hitting my like a brick. E45 is a great choice. It's non perfumed and brilliant for soaking moisture back into your skin. I will reapply this every hour until I fall to sleep.
Ice packs and ice cream....
When I get a flare up all I want to do is eat junk food...ok so some of this could be the steroids but it's also because my body seems to crave more and more food. Now because I don't want to put on too much weight and I certainly cannot exercise right now I have to be doubly careful. So I turn to the nutrients and vitamins that I need. So this morning I have stocked up on the things that I need the most, dried apricots, dried mango and cherries.......oh and the mint choc chip ice cream I have hidden in my freezer.
Then there are the ice packs that are very much my friend...but these are just here in case my body decides to follow my face and swell up. Normally I will need the ice for my ankles, knees and hands. Hopefully though my hands wont join in the party because I need them to work for work....so I am refusing to let them.
Have people on hand if I need help...
This is the most important thing really, more important than calming down my face, what happens if I get really ill. This is where I need to tell people what is happening and ask for help if and when I need it. Remember the Cass 2.0 plan that is happening...well this is where all the hard work I have put in will need to come into play. I shall be telling the people that need to know that I am unwell, I will be asking for help when I need it and I will accept the help when it comes. It does not make me weak, it does not make me a burden...it makes me a human being.
