Yoga with My 87 Year-Old Aunt Is Awesome!

I had a fantastic holiday weekend.  I hung out at my aunt’s house in Lancaster for four days with my Aunt Carmen, and ,cousin Karen (yes, she is my namesake.)

I have always looked up to my cousin Karen.  The first time I visited her home in San Jose as an adult, was in the 1990’s.  It was surreal for me to be doing grown up fun things like drinking margaritas, and laughing until the late hours of the morning. with her  Karen is actually my dad’s first cousin, she was an adult when I was born, but the years did not keep me from somehow inheriting  a lot of her personality traits.  The good, the bad,  and the crazy.   This past Saturday night together, we laughed because back in 1995, we were drinking tequila shots at 11:30pm, and this time at 11:30 pm on a Saturday night,  she was removing a knife I had lodged in a Granny Smith Apple.

We spent three days lounging and visiting while  watching CSI Miami.  I had never seen CSI Miami before, and  my favorite part is the beginning of the show.    Horatio (David Caruso) begins a comment, puts on his sunglasses, makes a potentially  profound statement about his comment, followed by the primal scream in the show’s theme song, “Won’t Get Fooled Again”, by The Who.   I wish I could find a way to have the scream cued up and play, every time I put on my sunglasses.  *sigh*

During my research of Horatio’s sunglasses, I stumbled upon the top 10 Jason Statham moments on YouTube. The only thing better than a Jason Statham fight, is a Jason Statham fight when he’s wearing only boxers.

What were we talking about?  Oh yeah, Yoga… with my Aunt Carmen {puts on sunglasses and walks away.}

That Monday morning following the  relaxing weekend, my aunt and cousin invited me to join them on their adventures, which turned out to be a healthy routine I envied.   At 9am,  I found myself in a senior citizen’s stretch class with my cousin Karen.

Last year at this time, I was doing Krav Maga classes.  That 45 day hospital stay really took a toll on me and now, I’m easing into activity.  Last year, I would have punched you in the neck, Jason Statham-style, if you told me I’d be in a stretching class for seniors.  Stretching is stretching and these seniors had a great program that would give a few 20-year-old I know, a run for their money.  I have always looked up to my cousin Karen.  This was the first exercise class we had ever been to together, and I was happy she invited me to go along.

About 15 minutes into the class, not only did I realize I was probably the only person wearing thong panties, I became acutely aware of how inspired I was by my fellow students in the class.  My biggest fear in the early years of my diagnosis was that I may not live to be a senior citizen.  Today, this rag-tag group of perky seniors gave me hope.

There are many things I have resented about having a progressive, degenerative illness at a young age.  I missed 7 years of my 20’s and spent all of my 30’s in doctor’s offices, hospitals and physical therapy rehab office visits.  But, I lived to tell about it.  Now I’m in my 40’s and I feel like I have my whole life ahead of me. I miss my 20 year old body, I’m not the first person in her 20’s to be ill and I certainly won’t be the last. And today,  there I was stretching with some old people and felt comforted that there was something I could do about my health. The students in this stretching class really stoked the fires of my inner control freak, and it was a great feeling.

There were cancer survivors, a 92 year-old women who still drove herself to the Senor Center every day, and there was my awesome cousin working hard to keep herself healthy, and able.  This health thing does not happen by sitting around.  You have got to get out and leave, especially when it’s hard.

Recently, my Aunt Carmen was unable to walk because her muscles had atrophied as a side effect of some medication.  She spent some time in a rehabilitation facility, where she learned to walk again.  When she returned home, she didn’t want to go anywhere, but my cousin Karen, got her moving.  It would take lots of convincing to get my Aunt Carmen in the car, but luckily, my cousin Karen is very stubborn and wouldn’t take”no” for an answer. When they would return, my aunt felt significantly better.   Now, these two have a great thing going on every day- and today, I had the privilege to join them on their Go-Go-Go! adventures.

After walking our dogs in the park and stretch class with my cousin, we ran back to the house to pick up my aunt for chair yoga at their local wellness center.  By the way, these activities are free to them, thanks to Medicare.  When we arrived, well- my cousin Karen has this amazing outgoing personality and of course, she gets that from her mom.  These two just light up a room.  I hadn’t seen my aunt this active in ages.  She introduced me to her friends, showed me around and then we took our chairs in the activity room.

 

We did some Thai Chi, then sat down on metal folding chairs with big comfy cushions.  Chair yoga gave me quite a work out and I felt so relaxed after.  The best part, was doing chair yoga with my 87 year old aunt and my cousin (who would kill me slowly and painfully, if I disclosed her age).  Three generations doing yoga together, so we could all be together, longer.  You’d think I would have taken a picture, but no- we were just to busy enjoying ourselves. And you know what?  I almost did not go to visit my aunt and my cousin, because I didn’t feel well.  I haven’t been as active as I used to and I get tired easier.  Or at least I used to.  Hanging out with my Aunt Carmen and my cousin Karen, was just the kick in the pants I needed.

So, if you have scleroderma, sarcoidosis or any debilitating disease, and you turn down an offer to go somewhere and do something, please reconsider.    It is hard not to be discouraged by pain.  And things will not always go as planned  It may be hard to get out.  It may be hard to move when you get there, but don’t pass up an opportunity.  You may be sore when you get home, and have to rest, but getting out is worth it. Life moves pretty fast.  Don’t miss it.

Editing note:  I originally published this post spelling Tai Chi, Thai Chi.  I left it, because it’s funny.  ~K

 

You’re welcome.

 

 

 

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone with my dog.

 

Tomorrow, I have an appointment with my rheumatologist at UCLA.  Today, I spoke with my primary care provider’s case manager (At the VA Hospital) and arranged to pick up my most current blood work.  I am really liking the VA in Long Beach.  The case manager wants me to contact her tomorrow morning with my doctor’s recommendations.  I do miss the rheumatology department at Loma Linda VA, but driving less was worth the move.

 

Today, I finally accepted what I already knew:  That I do not need a home health  care worker here with me 6 hours a week.  I’m too active now, which feels very good.  When I have to rearrange my schedule to be home to have help, I don’t need it.  I need someone to clean for me, not take care of me.  That’s a huge milestone.  After 45 days in the hospital and weeks of recovery, I’m now too active to have a nurse come over and that feels very good.  I know my family may be reading this and cringing, but they already know I’m not good at sitting still.  Today, though a Monday, was a great day!  I cleaned my own apartment.  The living room no longer looks like a laundry station.  My dog is exhausted and walked.

 

I gathered my test results and read my doctor’s notes from my last appointment.  My prognosis was good with a balance of diet and exercise.  I feel well most of the time, but I can tell my body is dragging from not exercising.  That’s really the last piece to pick up after that 45 day interruption.

 

So, tomorrow is the big day.  Back for my quarterly check up with my rheumy at UCLA.  Things are looking up.  Now the trick is to keep it going,  but hope is afoot and I think I have some great times ahead.  After being diagnosed with scleroderma 20 years ago this October, I never thought I’d make it this long.  I do wonder…  Is there some person who approved my lifetime service connected disability getting chewed out in someone’s office because I wasn’t expected to live this long?  Or is this person celebrating his/her retirement somewhere?  I hope they are celebrating, whoever they are.

 

I really should have worn make-up here.

That’s teleangectasia on my face.

Without the help of the Veteran’s Administration, and service connected disability benefits, I would not be alive today.  I would have had to endure ineffective treatment and it’s side effects, without the option to find a better doctor and pay out of pocket sometimes for a valuable second opinion.  I would probably be missing fingers because I would have had to have someone split a 100mg Viagra tablet into fours because Viagra was non-formulary at the time for Raynaud’s Phenomenon, (Yes, I was prescribed 25mg and the VA did try to get me to split up a 100mg.),  but I had doctors and practitioners who went to bat for me.  I do realize just how lucky I am to be here.  I wonder, why can’t everyone have disability benefits that are well above the poverty level, like me?   And don’t tell me it’s because I’m a veteran.  I think that is bullshit.  This is medical care and resources.  If a person is too sick to work, how can we expect that person to live a full life if they are constantly unable to buy medicine or healthy food?  And just because a person is sick and poor, that does not mean they do not deserve to live a full life.  Look, I don’t think we should send everyone on a European vacation, I’m saying wouldn’t it be nice if they could put their energy toward health instead of choosing between medicine and food?  I’m so tired of reading about sick people putting themselves in debt while being denied Social Security benefits and reapplying.  It’s just stupid.  And really it does send a message that if they just deny people enough, they’ll  die eventually.

 

Eliminating discrimination based on existing conditions is a start.

 

We are making progress, but it’s not enough.  I’m still here because I have had resources not available to most scleroderma patients.  Medication, though accessible, is still very expensive.  I wouldn’t know that because my medication through the VA is FREE.  Yes, FREE.  Imagine how many people might be feeling better if they had access to care and medicine.  Getting the right treatment based on expense rather that what works, is still the way insurance companies do business- and the VA if you don’t fight for it- but that’s a whole other post.

 

I really have no idea what to do about all that.  Is it just me, or did that go on a bit?   It’s your world.  I’m just living it it.