I would like to serve a few purposes with this. 1. Highlighting a rare disease kienbocks, which is a Lupus related disease. Something I had never heard of until I was diagnosed with it. 2. Yoga Fitness & its importance to maintaining general good health. Plus, the benefits through the recovery stage (if you have had surgery) include not having to sacrifice any goals thou adaptations will have to be in place. 3. Wellbeing & motivation. These can take a drop because, like building blocks, each brick represents something, be it internally & or externally.
Imagine having a life wall, which consists of emotions, thoughts, physical body, work, friends, family, study, motivation, exercise, nature, etc. Then you are diagnosed with an illness or have an injury that can dislogde any of the bricks because it will mean dealing with what is happening in that moment, which can be overwhelming in terms of practical things for example having to attend more hospital appointments as well as the appointments you already attend, physically overcoming any limitations which wasn’t there before & managing daily life including staying motivated. There are so many more examples, but you get what I’m saying.
The main point is to have yoga fitness or any form of exercise/activity as part of your life is beneficial in more ways than one. Not just for your body & mind. But also how you can live your life to its full potential daily regardless of changing circumstances. As we know, exercise can increase those mood hormones to happier state. Taking a walk in the park is great, not just physically but also your well-being. Being amongst nature can be soothing & calm. Even when you’re in a small park, which is common in urban areas, you’re able to connect to the trees, grass, etc. Which block out any other noises around you.
1. Kienbocks Disease. “A condition when blood supply to one of the small bones in the wrist lunate is interrupted.” (orthoinfo.aaos.org Kienbock’s Disease). Lose of blood supply to lunate causes the loss of its structural support it will collapse. Also changes, arthritis & stiffness in the surrounding bones of the wrist. In relation to Lupus SLE, using high doses of prednisone, which in my case was a frequent occurrence in my earlier years treating Lupus SLE as it was at its most active stage (Lupus Flare-ups). So I knew about its effects on bones as far as osteoporosis but never knew about Kienbock’s Disease (hand / wrist) bone death avascular necrosis.
Because of its rarity when I presented my initial hand / wrist issues to the GP because the front of my hand would produce a cyst like lump when I used my hand a lot & was experiencing pain in that area. It wasn’t considered & just sent for a regular X-ray that didn’t show my scaphoid bone was actually dying. It took two years pestering my GP surgery to get a more a more in depth X-ray after being told over & over again it’s just a ganglion cyst.
When you know your body & the pain/feel/mobility of the hand/wrist is different, there’s a new determination to get to the bottom of things. So by the time I got to have detailed imaging X-ray on my hand/wrist, the scaphoid bone had died (avascular necrosis) due to loss of blood supply, which could have been saved had it been discovered earlier. So the situation was I’m here now, so what’s next. Initially, I was offered to have a bone fusing of wrist to hand bone technique surgery. But refused because that meant a permanent portion of loss to the mobility of my hand wrist. When Lupus SLE has already taken so much, it wasn’t a hard decision to say no & concentrate on pain management. Plus, other aides such as a hand brace, etc.
Thankfully, my appointments from other hospitals were all moved to one hospital that was near my house. This is when I met a great consultant who, rather than put me forward to have the bone fusing surgery, actually had an understanding of the whole picture in regards to the impact on my life & how I want to live it. So I was grateful I didn’t do that surgery years ago. To be honest, when the consultant said he couldn’t believe the MRI scan was the hand/wrist of mine considering how severe the trauma was that I’d just been living with as normal. It was both a compliment & worry. With all the stuff my body has been through with Lupus SLE, this felt quite minor in regards to pain, etc. So it wasn’t a big deal in my mind because I had 90% mobility usage & had adapted to how I used it year’s prior.
Another blessing was that my consultant was a leader in arthroscopic hand/wrist surgery. This surgery has been an advancement in hand/wrsit surgery. Providing less invasion & shorter recovery time. As well as maintaining a higher level of mobility than the previous surgery. Of course, there is nothing without risk. As to resolve the collapsed lunate, rubbing against the bone below it. It was removed, leaving a space below the surrounding bones. So, there is a chance those bones could collapse into that space.
But being ever the optimist, if I stick to all the adjustments, for example, wearing weight lifting straps, once the surgery has healed, I can reduce the collapse occurring. It was astonishing to look at my wrist hand after surgery when the bandages came off. That the outside looked as if nothing had been done apart from the two tiny holes. As an onlooker at my own surgery, It didn’t look that serious. Until you think about what happened under the surface. Excising a bone is very serious.
Also, the healing & recovery process is very real, especially when your job is active. It did put certain things into perspective to me. As in when the bandage was off & dressings (mesh) were changed to cover the tiny holes for the skin to close the holes. Plus, a medical square plaster (the edges were like skin) over the two holes & a splint to reduce swelling. It doesn’t look like I had surgery. Is somewhat like people who see people with invisible illnesses (Lupus SLE) & can’t comprehend the pain & or issues they are experiencing physically.
As humans, we tend to view things as we see it initially. For example, I’ve had Kienbock’s Disease for some years, but I just wore a hand brace, be it the plastic one or material one if I’m out & about. People who see me regularly over a long time would say, “How come you’ve always got a hand brace on?” So I would just reply my bone died (technically I have a fractured wrist/hand) & it helps me use my hand better. But had I not been wearing one, no one knows any different. So it does come down to that old saying,’Don’t judge a book by its cover’.
I do think experiencing new Lupus related illnesses as well as decades spent in hospitals either as an admitted patient & or outpatient in different clinics, etc. You meet lots of people who share your symptoms but present/deal with them outwardly/inwardly differently. One thing about Lupus SLE is that I’m no stranger to pain, so while it’s nothing to brag about. Recovery whilst painful rehabilitating the wrist / hand to gain mobility & prevent scar tissue forming, which will inhibit movement, causing stiffness permanently. The level of motivation proceeds higher than the pain I do feel. So temporarily readjusting to doing daily tasks & exercise is a subconscious task. Also, knowing when to take a step back & not force things. Doing what’s right for me.
It’s very much about learning as you go along with Lupus SLE. Not only to help others understand it. But also personally that Lupus Related Illnesses are very much aligned with Lupus Awareness. It’s not just about lupus in name but about all the possible illnesses that can come from having Lupus SLE, for example, lupus nephritis (kidney disease). Some due to medication & some due to the Lupus SLE affecting your body. Also, a combination of both. Especially being immune suppressed even on good days, your body is consistently fighting itself. So whilst I can’t stop it. I can manage it keeping myself well informed as is & any new lessons I need to learn put into action. Also, how to communicate that to others.
2. Yoga Fitness. Yes, I’m the loudest at advocating the benefits of yoga fitness. Because it serves so many purposes other than just doing it as my form of exercise daily. The combination of mind & body exercises is more appealing to me. As well as combining the two allows me to maintain a consistent level of mind & body health no matter if I’m having a bad or good day in terms of illness. Also, the motivation to do exercise & or be active daily is just a habit.
As stated in a previous post. Having many different exercises already available. Meant having exercises that exclude the affected part of the body still being able to work on tone, strength & stretching. Also, flexibility & mind + body balance. That helps with pain management & recovery.
3. Wellbeing & Motivation. Which combines the first two. Being aware of your illness / injury so you have the knowledge of what’s going on. Can reduce anxiety & help you prepare. For example, I knew I couldn’t do anything, which required any type of weight bearing strain on my wrist / hand. So it was more walks in the park, not just because I love walking but I feel at my calmest exercising outdoors even in its simplest form such as walking. But also, being outdoors provides that sense of peace away from surgery, hospitals, etc.
Yoga poses meant I could still do a selection of exercises that helped maintain core strength & flexibility. Plus, I also got a good stretch with fitness maintaining tone & stability. Motivation was still at a high & combining my wrist hand rehabilitation therapy helped make sure I did my daily exercises. Because, why not just do everything at the same time. Being off work & having to say no to social engagements can feel like not again, but having that sense of well-being & motivation it becomes not a big deal or imposition because it’s a positive outcome for improvements in your life physically & mentally.
If you’ve experienced kienbocks disease. Leave a comment below.
G.ElliottServices 