Hi Folks!
I received a phone call yesterday with the message that I am booked in to see an Osteopath this January. I have been in pain for a very long time, and think it is Psoriatic Arthritis. And I want to dance as long as I can.
Now that is out of the way...
I turned 50 this year. Yup, 50. And I love it. It is the most liberating thing that has happened in quite some time.
As a brief update, I may have sorted out some of my personal relationship issues. I am dating, and have some steady people in my life - yayy! I am even learning that it is okay to care and to be cared about, and am starting to ask people for help instead of trying to tackle the world all alone all the time.
I am also in progress with health. The IBS-D is more manageable now. I stick to a low-FODMAPs diet most of the time, allowing myself to try new foods and to have small amount of treats periodically. I still get flare ups, especially if I am tired or stressed, but they don't normally wipe me out as badly as they did in the past. It is easier to live with restricted food than it is to live with full-blown IBS-D. I am so grateful to the workers at the Monosh University in AUS for the work they have done, and continue to do, in the field of IBS management and food.
Now...all the updates are out of the way. I am feeling a strong need to write again because I had a phone call yesterday from the doctor's office telling me that I have an appointment set for January to see an Osteopath. I am guessing that the blood work that was done a couple of weeks ago came back positive for Psoriatic Arthritis (PsA). I was diagnosed with skin Psoriasis about 15 years ago, just after I quit smoking. Yup, quit smoking and psoriasis showed up. I am one of the lucky people as I it isn't too bad for me. I get it on my scalp, ear canals, elbows, and a tiny patch in between my toes on a regular basis. My fingernails always have tiny pits, and my toenails have more severe signs, thus are always painted. Increase my stress levels, and scales may show up in my eyebrows, and even in a butterfly pattern on my face (checked - no lupus). Thankfully, it hasn't shown up on my knees since my original diagnosis. I have learned to live with it, exfoliate an awful lot, use olive oil for cleaning, and often forget it is there as being itchy somewhere is second nature to me now. As well, many people don't realize I have it as I rarely show external signs outside of really rough elbows due to all the care I take with it.
Well...I am avoiding why I am writing. About five years ago, I developed plantar faciitis (PF), and it almost crippled me as it lasted for 2.5 - 3 years. Non-stop wearing of custom orthotics and orthotic-style shoes along with yoga got it to go away. At least, at the time it was diagnosed as PF, and treated as such. For the most part, it has gone away but still tends to show up the odd time.
Then, about 2 years ago, my hips became quite sore after spending about 10 days fire dancing every night at a festival. Fire dancing involves a lot of hip movements, and I had a sloped camping spot so sleeping flat was impossible so I wrote off the pain to that. Then, it never went away. About ten months later, it was still there so I went to the doctor who sent me for physiotherapy. I faithfully attended physio sessions and did yoga, stretches, and muscle rolling like crazy...and, although it abated, it never went away. The pain would slow down but not stop.
There has been a drastic increase in pain over the last year or so, and I now have to stretch almost daily to keep things within a tolerable range and sometimes pop Advil like jelly beans. Since last winter, the pain has increased to the point now that, if I actually listen to it within my body, tears run down my face because it doesn't let up or go away. But...most days I strap on a smile and go about my business and don't say much about it because it is what it is, and I have things to do. People notice me hobbling at work when I stand up, and I laugh and say I am old when inside I just want to hang onto something tight and cry. Sometimes I am so exhausted from the pain that I retreat to my comfy chair and watch garbage tv, hoping the pain will slow down enough again for me to get back out to the real world. There isn't much room for me to have self-pity in my busy life so I plug on, go a bit slower some days, and try to continue on in a normal way.
After trying to live with the high pain levels, I finally broke down with the physiotherapist a couple of months ago asking why my muscles weren't healing, and why the pain was getting worse in spite of doing all the exercises rather faithfully for the previous two years. She didn't have an answer, and asked for me to contact my doctor for x-rays, which I had done.
The x-ray results show that my SI joint is disintegrating a bit. The SI joint is the one that connects the hips to the spine. Thankfully, it doesn't have a large range of motion. The doctor sent this information to me in an email. I kind of tottered around camping that weekend feeling a bit emotionally numb trying to digest the information that my body is actively breaking down, and pondering what the best and worst life trajectories might be. So I came home, and started to do some research.
As mentioned up higher, I have Psoriasis. And Psoriasis can develop into Psoriatic Arthritis (PsA). I went to my doctor to chat about the SI joints, and the possibility that it might be PsA. She wanted to send me directly to a sports doctor, but was quite open to sending me for testing when I explained my Psoriasis to her, and how I have been diagnosed by 3 previous doctors, if I remember correctly (I have only been with my current doctor for about 4 years, having gone to walk in clinics before that so she is missing a bit of history with me). I am glad she is open when I request testing. So, that leads me up to the phone call yesterday. I still haven't heard back from the blood work but, having an appointment made with an Ostepath rather than a sports clinic makes me think my results were likely positive for PsA.
So. That is a lot of news for me to digest. I have only spoken to one person about the PsA this weekend, and haven't quite digested it yet. I am slowly accepting that the pain I live with may never go away although, from what I am reading, it can quite probably be managed. I have also discovered through reading this weekend that high levels of exhaustion are normal with PsA, which explains why most days I want to fall asleep mid-afternoon, and find it challenging to maintain my usual busy lifestyle. The biggest thing I have been thinking all weekend, well, since I got my x-ray results actually but even more so now, is that I really want to live.
I want to dance as much as I can before my hips conk out. I made myself dance at the festival this summer. I couldn't keep the pace up like I used to, it was harder to swing my hips around, and I couldn't dance every night but, still, I danced. I danced my heart out. I danced like I may never be able to dance again. And I want to continue dancing. I want to dance so much that if a day ever comes that I can no longer dance with my body that I can dance in my mind and feel it in my body as if I was still actually moving. I want to dance.
And I want to go sky diving. Yup, I want to leap from a plane. That much said, I may just accept leaping off a cliff instead with a bungee cord. I am not ready to stop playing.
So. That is what I am facing right now, and am facing most of this alone. I am not sure what is going to happen next or how I am going to deal with it if I am told that my body will break down but I do know one thing. I have faced a lot of challenges in my life so far, so I can face this one too because nothing has broken me down yet. So...
Off I go to tighten my laces and snug up my boot straps because I may be in for quite the journey this year and need a good pair of shoes to do it in.
xxo
Lou
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