Fun fact about systemic sclerosis

Since this is a blog about not just my amazing life but also my medical challenges I thought I would share a photo of what my knees look like at the beginning of a flare up.  System Sclerosis (SSc) causes all kinds of fun things and I have to say I feel blessed in a way that this disease hasn't moved its way to my skin yet.  The tightening of the skin is something that is debilitating and it completely changes your appearance.  I won't post any photos of that here but if you search for a google image of scleroderma, you will see what I am talking about.  I have noticed some tightening in my fingers and toes (especially at the tips) as well as around my eyes and mouth.  I can only notice it when I look at pics of myself from a year or two ago and I see my eyes seem a bit sunken and my mouth is smaller now compared to then.  My version of this disease (it is different for everyone) really effects my organs and joints.  Which is what caused my lungs to harden and turn to scar tissue.  And it causes an incredible amount of pain in my joints.  I started having pain in my knees several years ago and was told it was arthritis and I did my best to manage it.  It wasn't until I was diagnosed with SSc that it became obvious that a lot of the pain I have had over the years was likely due to my autoimmune disease, not arthritis.   It used to stick mostly to my knees but has now spread to other joints, like my ankles, elbows and wrists.  They don't get terribly swollen like my knees do but the pain is still very real and I am sure that will happen eventually as the disease progresses.  Flare ups last for a few days up to two weeks and doesn't seem to be 'brought on' by anything specific.  Just hits me at random, hangs out as long as it feels like and then disappears as quickly as it came.  Along with the joint pain also comes overwhelming exhaustion and just feeling lethargic.  Fortunately, now that I am not working, the battle isn't as tough and I can baby my way through the flare ups with heating pads, meds, self massage and lots of naps!  The photo below is the beginning of a flare up, full blown flare up looks more like I am trying to hide a couple of balloons in my knees and it is quite difficult to get around not just because of the pain but because it is hard to bend my knees.