2020 has been an interesting year so far.
March 2020, a month of big happenings, not only in South Africa but for me.
After an appointment with my GP a couple of months ago (complaining of tingling and numbness in my hands and feet, swollen sore fingers) I went to the referred Rheumatologist. It was the scariest couple of months waiting for an appointment. I thought I had MS or something life threatening, I have 3 kids, I can't have something that makes me not able to care for them.
I refused to consult dr google because scaring myself more in an already scary time is useless. So I put it out of my mind until I knew for certain what it is.
So I was diagnosed with Axial Spondyloarthritis (AxSpa). A condition that I seem to be genetically predisposed to have as I have the HLS-B27 gene.
After my diagnosis I immediately went into denial. The aches and pains could be explained by a number of 'normal' stuff. The more and more I thought of it I realised a lot of things that I struggled with for so long finally made sense.
I had to understand that this is a long road that I will have to travel, a difficult one and one that I will have to travel alone.
So what is this Spondylowhatchamacallit?
Copied from our friend wiki:
Spondyloarthritis is an umbrella term for inflammatory diseases that can affect the back, pelvis, neck and some larger joints, as well as internal organs, like the intestines and eyes. The most common of these diseases is ankylosing spondylitis.
It sounds easy enough. What all the googles don't say is that it effects each person different. That because it is an inflammatory disease it does not only cause inflammation in your back but in all your joints. As in.. Tennis elbow, golfers elbow, (never knew you get both of them) wrists, knees, ankles, hips, shoulders, fingers, toes, jaw.. if it is a joint, it will probably be inflamed. No, not only one at a time... for me it will be all my joints at once.
If someone gives you a hug too tight it feels like you are being ripped apart.
I actually look normal while I am in excruciating pain. One thing about chronic pain little know is that when you have it you can't just go sit in a corner and sulk.. You would sit in that corner till the cows come home. There is things to do and life to be lived.
When I start to complain about my pain, as in mention that it is slightly uncomfortable my pain is actually at an 7-8 level. When I sit still for long periods of time and say it hurts, then know it hurts like hell and my pain is at a 10+.
I am always in pain, some days I can say it's a great day, I have mild pain and others I will tell you that my earlobe does not hurt and that is about it.
This is a journey of discovery of my disease, how to change my life to accommodate the disabilities that come with this disease and how to enable myself to farm, home school and raise my kids while trying to walk tall.
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