PVNS or TGCT - Post Opp Success

 When I was diagnosed with PVNS in 2013 I had already known about the bulging tumor for about 10 years that protruded from the lower left side of my right knee.  Eventually it got so difficult to bend the knee without manually moving the tumor out of the way.  I had to demand to have it removed surgically after it was confirmed as diagnosed PVNS through MRI's that I was injected with contrast.  And that was after they ran a whole set of knee images without it.  The surgeon and the hospital that was helping me wasn't my favorite.  I was especially not fond of the fact that he had a conversation with me about the procedure right after I woke up.  Have you ever tried to remember anything after a surgery?  I think good doctors should schedule a post op appointment within the next few weeks or call the patient the following day.  Both is best but I don't always get that level of care.

After 3 surgeries, the last 2 being with the same surgeon.  I chose him after interviewing many other surgeons in the area and then my regular physician and I ended up googling a doctor at a hospital that we agreed to try.  He wasn't the guy.  But he did refer me to the one I trusted from then on out.

Because it's a teaching hospital, the surgeon was allowed to experiment and chose to cauterize the lining of my knee.  It seemed to work because it has been 5 years since my last surgery and I have little pain or discomfort.  And am quite mobile.  

Pandemic Changes

 After my last knee surgery in Apirl of 2017, I was anxious to get back into the gym.  I worked out nearly every day.  Mostly the weekdays. But I would average riding 6 miles at least 5 days a week.  I would ride for 25 minutes and maybe lift weights.  Maybe I would swim for 25 minutes instead.  I was fit.  I was active.  I was in the best shape of my life.  I went on trips where I would walk for up to 7 miles a day without any kind of assistance.   It was an amazing time.  And just before the pandemic shut it all down, I started noticing that it wasn't so easy to walk a long distance anymore.  I went to Disneyland and didn't last a day.  By the second day I was finding reasons to go back to the hotel earlier than the rest of my family.  All evening shows are out of the question.  By the third day, I was riding a mobility scooter.  Oh the freedom I found.  Not only could I get places easily,  I got on rides easier too.  No fast pass needed.  Just get in the handicap lane with your entire family.  I got a lot of terrible stares when this fit looking lady was rolling around on a mobility scooter with what appeared to be minimal walking restrictions.  Sure, when I don't have to walk long distances, I'm fine.  Only weeks before this trip, I lost my father to cancer that he was only diagnosed with only a month before he passed.  And just before the pandemic shut it all down, my daughter had a baby.  We were all shut down together with a little one.  I started baking.  I became sedentary.   I didn't even bother to ride my bike.  I bought a bike attachment which soon proved to be a massive waste of money.  Then I did buy a stationary bike but admittedly have lost my motivation to be consistent.  For a lot of reasons but I find them to really just be excuses.  Going through the changes of social norms, we all got used to sitting around and eating.  And during this time of shutting down, I was handed the menopause process.  How I have changed even more beyond physically.  I stopped caring about wearing make up, dying my hair, wearing bras, and everything else I find a superficial reason to waste more time in my life that I truly didn't actually care about.  However,  I do have to have my nails done professionally now because they are constantly breaking.  My hair went from a well manicured and maintained vertical bob to a now mid-back length salt and pepper (brown with streaks of grey) that I have recently covered with purple.  Now we are all trying to get back into the habit of getting to the gym regularly and traveling again.  I never get on an airplane without a cane.  I have an impressive cane collection.  They all go with different types of terrain and fashion.   My doctor is moving away next month. That means I get the added task of finding a new family doctor that I will need to educate them with what PVNS is.  I'm just grateful that I can still walk and do most things.  That PVNS does not control my life.  And that I'm not in constant pain.

Turmeric On Everything!

I must be doing something right.  I haven't had much news regarding my PVNS since my last surgery that was three and a half years ago.  I do feel it in my knee, it has returned.  But not where I feel like I need another surgery again soon.  I used to think that once it started limiting my ability to move my knee properly that I needed to get surgery right away.  Now I am trying to be patient with it.  

I have been getting by with making sure I incorporate turmeric in my meals.  Turmeric is such a great anti-inflammatory and I assume that mostly my knee is challenged with inflammation rather than PVNS.  At least that is what doctors have said in the past.  I am going to have to agree that Turmeric has helped.   

I have no pain unless I stress my knee by doing movements it doesn't want to.  Bending it a certain way triggers the pain.  Thankfully I haven't had to endure a bout of severe swelling as I have battled with in the past.

PVNS in the knee, pain in the hip

 I have learned that I overcompensate for my PVNS knee as a habit.  This causes me to put extra effort on my left hip so that I don't put too much weight or effort on my right knee.  This causes extra wear on the left hip and I sure feel it if I do not use a cane when walking long distances or hiking.  I usually stay away from exercising with any kind of impact.  Riding a bicycle or swimming is my comfort zone.  Extensive walking can be done with a cane but I will get into a mobility scooter if I need to.  Even when people assume I'm able bodied because I'm in shape.  Or at least I was before covid hit and my gym shut down.  I regressed back to not getting the exercise I need on a daily basis and eating my feelings about it.  I've gained about 15 pounds.  I'm 5'8" and my ideal weight is 145lbs.  I'm ok at 155lbs even.  Last week I was at 163lbs and that was too much for me.  I can't fit into my clothes any longer and I'm not about to buy a new wardrobe.  I just have to find something that works to start moving this knee again or my hip is going to pay for it later along with my waistline.  

The pain in my hip was excruciating after going on a "walk" with a friend recently.  She led me to believe we would be walking a loop that I assumed would be a mile or so and take us about an hour.   She suddenly announced that we could head back any time.  I was not excited about her lack of telling me she changed her mind about the route and ended up taking a 3 hour hike rather than a simple walk around a few blocks or so.  I could barely walk the rest of the day or the next day for that matter.  I took a bath in Epsom salts in order to extract the pain in my hip.  It worked and I'm back to being pain free.

I also know that if I keep walking past the hip pain, eventually I develop foot pain in my right foot to compensate for the left hip pain.  It's a chain reaction of uncomfortable movement.  And I know that as I get older it will become more prevalent in my daily movements.  Already I feel like it's hard to get up out of a seating position.  And that is purely because of my lack of exercise for the past 8 months.

Pain Relief For PVNS

Where is time going?  It all has blended together and I have found myself becoming sedentary.
I allowed myself to stop doing the routine things that were maintaining my knee from becoming prevalent with symptoms including pain.  I went from riding a bicycle 6+ miles several times a week and yoga daily to nothing. 

I also have used a topical mix of frankensense and coconut oil infused with cannabis.  Whether it's woowoo or actually works, I'm convinced it does.  I haven't been as diligent to apply it daily.  I'm feeling all of the effects of my lack of motivation to care for my knee properly while there is a pandemic shutting down my normal routine.  

The bridge that gives my neighborhood of $100,000 access to downtown has crippled my mobility further.  Effectively shutting us off from being able to have easy access to the city.  The traffic isn't worth the commute.  The perfect storm of working from home, and not having easy access to my office, eliminates the routine of leaving the house on most days. 

My knee is feeling the effects of my lack of activity.  Recently I invested in exercise equipment to use at home.  A yoga studio space, a small trampoline, and a bicycle attachment that I can ride a stationary bicycle indoors.  The bicycle attachment is loud and vibrates the entire house.  I haven't quite got into a new routine with that.  And quite honestly there is so much political unrest that it is truly not safe to go anywhere.  There were a few dead bodies left on the beach a few miles from my house recently.  So I'm terrified to go on a real bicycle ride in the neighborhood.  I would be horrified if my bicycle broke while I'm miles from home.  Probably an irrational fear to carry, but since it has happened I can't deny that I worry it could happen again.  I've become a recluse.  It is what it is. 

I'm focused on giving my knee more care and attention so that I can stop thinking about amputation and what it would be like to have some cool 3D printed bionic leg replacement that had compartments for my stuff and LED screens that I could have cool designs on.  If I have to think about something about my knee, I want it to be epic.  That way I can stay consistent in my denial that I have anything wrong with me.  

I should also be able to shed the 10lbs I have gained since March if I can find a new routine.

Oh, what does all of this have to do with pain relief?  EXERCISE!  I know for a fact that if you do not keep moving your joint that is effected by PVNS, you will suffer.  I'm going to keep talking about this because it is so important.  I didn't realize how much time has passed since I last posted.  3 months has passed since I wrote something.  And it was also about how important the exercise is.  Try to do something daily.  Low impact of course.

Keep Moving!

With the closures of the gyms, parks, and general exercise that I'm used to, I have become less active.  I usually go to the gym between 3 to 5 days a week and ride a stationary bicycle or swim in the pool for at least 25 minutes on top of doing yoga for at least 20 minutes every day.  However, with the current COVID-19 Pandemic, my usual ways of exercising have gone away.  It's too cold to swim in the local waters and I am not ready to ride my bicycle because it needs a tune up and I don't want to risk it breaking down if I just jump on it after not riding it for over a year.  And it's generally scary to go outside.  It's full of folks that are not trying to cover their faces or congregating in groups.  There are also more criminals since the jails are letting people out early.  People scare me.

The immobility caught up with me and after working in my yard, not doing much other than mowing my lawn and pruning trees from the ground, my knee started swelling.  Out of nowhere it just started swelling up.   It didn't seem to stop and it became so painful I couldn't walk properly.  I spent about 3 days elevating and icing.  I spent 5 days in a compression sock.  Finally my leg works again but I wouldn't call it normal.

I have turned to eating foods that help with inflammation.  Salmon, olives, muscles, and shiitake mushrooms.   I probably need to omit more things like bread that I really have a hard time not eating those things.  It is giving me the comfort I need while I'm isolated.  I rather think it's my sugar addiction that is telling me that bread makes me feel better. 

I've tried to find more ways to stay active and most of all, move my knee.  I have considered buying a mechanism to turn my bicycle into a stationary bike at home but the expense can't be justified since it's springtime.  I'm also not excited about riding in the rain, I have not ventured out to ride until it stops raining.  I'm a wimp about the weather.   So, instead I am trying to stretch my knee more with my yoga poses and I have taken up the hula hoop.

Suspended Animation

During this amazing time in history with the worldwide pandemic of Covid-19 the world has had to embrace something resembling the slow living movement.  However, it rather does closely resemble a suspended animation of people living but not their normal lives.  A massive adjustment to live a new normal is being thrust upon humanity.  It is a time to learn to listen.  To be silent.  To adjust.  To change.  To adapt.

It has been a reminder for me to do everything slowly.  Enjoying each moment and finding the gratitude in the small things.  PVNS forced me into a slower lifestyle and I embraced it.  I took every opportunity to do things slower.  Eating, breathing, deciding, moving.  Everything.  It's exciting to find new things to practice doing slower.

I do feel there are more health benefits to living slower.  I don't suffer the same as other PVNS sufferers.  I do not live in pain. I have diffused PVNS in my right knee and I have a bit of swelling which I do assume to be attributed to the inflammation caused by not always eating the right things.  I do feel that the consciousness of being slow has even slowed down the return of my PVNS since my last surgery nearly 2 years ago. 

And although there is much suffering in the world currently, I find gratitude in the time I have to be slow.  I hope that during this difficult time, people find the gratitude in what they have in this life.  This is a wonderful time to reflect on what truly is important in life.  Despite things in the world not being wonderful at all.  I hope you find simple gratitude during any time of your life.