On To The Mission At Hand…

 

In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.

The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.

If You Skipped to the End

I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!

 

Hand in splint designed by patient's occupational therapist for patient with scleroderma
Notice how the splint is cut around boney prominences to avoid pressure sores.

 

 

hand in a splint made by an occupational therapist to gain or maintain range of motion.
Yes, that is nail polish. I’ve been moving, there’s no time for a manicure. Don;t judge me!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.

Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.

Thanks!

 

Link Sources:

Scleroderma Research Foundation

Joint Replacement.com

You can make a difference and help fund scleroderma research:

Bounce to a Cure

Scleroderma, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!
Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 

 

My Not Exactly 14 Hour Lipstick Moment

Do you ever see those 14 hour lipstick commercials?  You know, beautiful young women in their twenties doing something professional like rolling out blue prints, dressed in a curve hugging dress, eating pot stickers with chopsticks right out of the take-out box for lunch.  I know what you’re thinking.  You’re thinking, Karen, that’s no commercial- that was yesterday.  Well, not for me.  The other day,  I went out for coffee wearing a novelty men’s t-shirt.  Today, I am wearing another men’s novelty t-shirt and tomorrow, you guessed it- another men’s novelty t-shirt.  See the pattern?  Oh, I still wear my lipstick.  Just no curve fitting dress.  Tomorrow, lunch will be a protein bar or PB&J.  When did this happen?  When did I become this men’s t-shirt, make-up-yoga-pants-wearing Hobbit?  I sat on my couch tonight watching a 14 hour lipstick commercial during The Big Bang Theory wondering, “Did I even HAVE a lipstick moment?”

I guess that was supposed to happen during my twenties.  Of course, I look back and I remember my twenties full of doctor’s appointments and tests.  Sometimes, I feel like scleroderma robbed me of my “Lipstick Moment”.  But wait, I did something else in my twenties.  There was a time before scleroderma and it did involve wearing all white to work sometimes.  When I was 22, I was in the Navy (yes this video does make me feel a little badass, I would have chosen better music).   I kind of had my “14 hour lipstick” moment. I probably had more than one, but the one I remember most vividly happened not in a big building with blue prints in a tight fitting dress.  It happened on board a ship, somewhere in the Indian Ocean.   I wasn’t wearing white at the time, I was wearing my working blues.  Back then it was bell bottoms and a light blue shirt, often referred to as prison couture.

The galley just got the soft serve ice cream machine working, or maybe it always worked and I never noticed it.  It does’t matter.  My friend Samantha and I were sitting at a table enjoying our ice cream cones.  Now, keep in mind we were out to sea on a ship and that’s a very lonely place, so please don’t judge the subjects I talk about.  Sometimes we all have a moment where we can’t stop looking.   Anyway, Sam and I  were enjoying our ice cream cones at a table in the ship’s galley.  It was very hot and our cones were melting fast.  I had almost finished the top of my cone, when I looked up from our conversation.   Every male in my line of site was staring at us.  Apparently, eating an ice cream cone is interesting to men.  I made a motion to Sam, slapped her on the shoulder and pointed to the nearest male.  We both looked at him.  He looked frightened and turned bright red.  Sam and I looked at each other and laughed.  The galley became noisy again.  We finished our cones and headed back to work.

My life today is far from a supper-model-14-hour-lipstick moment.  Or is it?  I did get hit on while wearing my mens novelty t-shirt to coffee the other day.  Maybe it was the lipstick or my snappy wit.   Maybe I’m just as hot as I was at twenty two.  Maybe at 41 my wisdom

woman with contracted hands applying lipstick.
Circa 2003 at 5 months pregnant.

and intelligence adds to my hotness.  And maybe ducks will fly out of my belly button.  Who cares?  I still got hit on while wearing a men’s novelty t-shirt and yoga pants and what I think look like goofy hands.  I’ve still got it.  We all do. Sometimes we just need to be reminded, more importantly, we need to remind ourselves.  I rarely feel like the hot chic, but my inner hot chick is there and it shows itself.  Your hot chick or hot guy is still in there.  Don’t neglect him/her and let him/her out every now and then. And remember, sometimes our hot chick/dude is showing whether we know it or not.  Now dance. 

 

Because I Can

So, after further review of the budget, I had to stop maid service.  It takes e a very long time to clean, but  I decided if I tackle one cleaning job a day, I can stay on top of things.  Yes, it is tough and time consuming, but only if I do it all in one day.  I can’t believe I didn’t think of this sooner.  I could have saved so much money!  So today, I took on my first task; my closet and my bathroom.

I used to sit and dread cleaning.  Not today.  Just knowing I was only doing my closet and bathroom made my objective possible.  I did it.  I still felt energized, so I  moved on to the laundry, but I didn’t get too involved.  See, my old behavior would have been to keep going until I hurt myself or collapsed into a sweaty heap on my bed at the end of doing all my chores at once.  That sounds like not such a bad thing, but that kind of behavior  would result in the following day being immobile, in pain and grumpy.  So, maybe my other bathroom is a mess, but that can wait until tomorrow.  I can spend an hour or two, take my time and have the rest of the day to have fun.

Yes, I can do this.  It will result in more pedicures and possibly a vacation.  A real vacation, not a trip to a relative’s house. I mean a real vacation.  Yes, I want to stay somewhere I can swim to the bar.  Just because I can’t drink doesn’t mean I should give up on my dream.

Maybe not exactly this house sitting gig, but it does get me in the mood. Click here to enjoy  Someplace tropical where I have to swim to the bar, with fewer banana hammocks and more board shorts.