Scleroderma Does Ugly Things to Beautiful People

Yes.  Scleroderma does do ugly things to beautiful people, and me, too.

Photo by comedian Brendan Cooney, co-host of The Bunny Ranch at Karma Lounge. Yes, I am wearing yoga pants.

When I began this blog, my intention was to raise awareness of scleroderma.  I’m going on my sixth year with this blog, and awareness is not enough.  The truth is, scleroderma is an ugly disease.  It doesn’t directly affect breasts, and the damage done by scleroderma is shocking to those who are completely unaware.   I know, no one wants to hear that people aren’t paying attention because there is no high-level celebrity that has it, except Queen Latifah’s mom.  Here are some things not being covered, even by foundations.  Not because they don’t want to, but because they are too busy researching and assisting patients and their families.

There are so many things that bother me about awareness campaigns.  First, small independent patient communities, not affiliated with research or patient advocacy, raising money for swag to fund their advertising which includes a bunch of prayers and stupid bracelets.  I’ve had scleroderma for twenty-one years and not once has a stupid bracelet made me feel better.  How about skipping the middle man and sending that two bucks you paid to look like you made a donation or care about scleroderma, directly to research or patient advocacy.  Or maybe something like a scleroderma patient’s cleaning service.

Unless you are dying or rich, scleroderma patients do not qualify for cleaning services, without having a home health nurse.  Don’t get me wrong, many patients need full time care.  But for those who don’t, like me, the last thing I want in my house is someone dressed like a nurse, who has to stay for three hours twice a week, cleans my house half-assed because she’s there for healthcare and of course hear about all her personal problems (I’ve had this done with three “helpers”.)  The last time, when I was released from the hospital after forty-five days last year, the VA granted a home health care assistant.   Eventually,I had to schedule myself to be home three hours, twice a week so she could help me clean.  Of course, she was there for healthcare so getting her to clean was like pulling teeth, so that didn’t last long and I resumed my own cleaning. All I needed was someone to come by once a week for an hour and a half and do the heavy cleaning in my house, then get the f*ck out.  I didn’t need companionship, help dressing, eating, bathing, even though I had to stay off my foot.  Just clean the bathroom, kitchen floors, change my sheets, not even do laundry.  But no, the VA doesn’t do that.  Everyone is so busy looking for fraud, that people who could use a little help now and then have to wait until they are injured, or worse.

And then there are people who tell me, “ask your family to help.”  First of all, I live near none of my family.  I live near a health care facility qualified to take care of my medical needs.  Also, that would require me to live near my family.  One family member even told me I should try assisted living.   I get home from comedy clubs at two or three in the morning, and I drive myself.  Look I may have stayed in the hospital forty-five days, but I did not go without a booty call.  I had two during my stay. I got away with it in a hospital, because nursing stations are busy at shift change, but in assisted living,  someone’s going to notice my room mate sitting in a wheelchair outside my room for at least an hour to get the return value on  that Brazillian I pay for every month.

I’ve done my time laying around in pain waiting for medications to be developed to cure scleroderma and sarcoidosis.  The diseases have  run their course.  My lungs are scarred, I have lost mobility in my hands and I still deal with chronic pain.  For me, the worst is over.  I no longer wish to raise awareness of scleroderma.  I want to make patients aware that if they can just keep fighting, and  remember to start fighting again when giving up (I’ve given up plenty of times), that there can be life with scleroderma.  Right now, you might be fighting to breathe.  There is a chance you can make it through this, and if you do, there is so much life to live.  Look, there will always be a time when our bodies will tell us we are ready to move on, that it is time to not give up, but accept that it’s time to leave this life behind, scleroderma or not.  For those patients out there wondering how they can live with the damage, it can be done.  It will take work, there will be disappointment and there will be some success.

The only thing I hate more than having scleroderma, is when someone tells me they are sorry.  I know people don’ really know how to react, and maybe patients appreciate it when hear someone is sorry they have scleroderma, but not me.  It doesn’t anger me, it enrages me.  It’s not that I don’t appreciate them feeling something, but sympathy?  I’m not dead yet, Mother F*cker!  And it usually in a doctor’s office where I am trying to get routine care so I can maintain my health.  I don’t want sympathy from a healthcare provider.  How about some empowerment with care that encourages me to be active?   Luckily, I get that at The West Los Angeles VA Hospital.  I also got it at Loma Linda.  Long Beach sucked.  (That’s my review of those three hospitals.)

So that is my ugly, honest rant.  It’s how I really feel about fundraiser drives to support advertising and teal-wearing and showing pictures people without scleroderma will scroll past on Facebook because it is so shocking.  Hell, I scroll past a picture of a scleroderma patient clearly suffering.  It sucks.  Not as much as having the scleroderma, but it’s definitly hurting the fundraising.  Save the Tatas, raises money because people love to see boobs.  Groups who post the worst and seek sympathy, shock people away from  learning about scleroderma, because to someone who doesn’t have it, it’s hard to see.   I know, it’s not what any of us wants to hear, but does that make it any less true?

 

What I Would Tell My 23 Year-Old Self When I Was First Diagnosed With Scleroderma Part 1

A fellow patient asked me what I would tell my 23 year-old self, if I could go back in time.  Three weeks, and a Cliven Bundy rant later, I found the guts to do it.  I started thinking about it and I decided to stop.  His 15 minutes are over.  There are so many things- and things I need to explain.  Not just to other patients, but to myself.  There are so many things I wish I had done differently, but really there was no way for me or my doctors to know what to expect.  Scleroderma is different for every patient.   


So, this is going to be a series.  It may have different posts nestled in between, but I will make it easy to find by labeling them with the same name, and number them in order. 


I am writing this as though the reader is familiar with scleroderma.  I have a ton of past post explaining my symptoms, and how they were treated.  Don’t use my blog, as a reference for scleroderma.  I am not a doctor, this is a blog, and I only explain symptoms from my perspective.  Please visit Scleroderma Research Foundation and The Scleroderma Foundation and the NIH About Scleroderma page for definitions and terms.  I will usually post links to terms, but if I do not, you can find the proper clinical explanations there.  Thank you for readin, and be sure to follow those organizations to keep up with what’s new with Scleroderma.  


  This is what I would go back and tell my 23 year-old self, what I need to do.  This is not “gospel”.  I am not an expert.  This is what I would have done differently, and how I would encourage myself to keep going.  I still need to encourage myself, just like any “healthy” person who for example; exercises, etc… to stay that way.  


Part 1 

Big changes I wish I had made sooner, rather than later. 


It took me nearly two years to stop smoking.  Before my diagnosis, I moved from San Diego, to La Crosse, Wisconsin.  I continued to smoke after my diagnosis.  It caused my Raynaud’s to worsen, contributed to the loss of the tip of my thumb and slowed healing.  In addition to making my symptoms worse, it made it harder for my ulcers to heal.

 

I did not see an occupational therapist, until after the tip of my thumb had been lost.  If I had, I may have been able to prevent damage.  Again, that’s may have.  Some symptom hit so fast and hard, intervention will not help.  Never give up on trying.  And if for some reason you stop going, but think about going back to an OT, please do.  Don’t be hard on yourself about stopping.  If you are able to start again, it may encourage you to keep active, and prevent injuries or learn adaptations when change happens.  There is only one guarantee in life: Things will change.   It doesn’t need to be labeled good or bad, it just is.

 

Exercise or keep exercising.  It would have helped me cope with my stress, as well as keep me stronger.  I find that when I exercise, I have less pain. I have stopped and started again too many times to count.  It will also prevent muscle atrophy and loss of rang of motion.  At one point, any skin showing was shiny, hard and thick.  It hurt to move.  And the damage that was done, still leaves parts of my body in pain, but when I exercise now, everything feels better.  After a rough patch of not exercising, that is when it is hardest to start up again.  Don’t give up.  As long as a doctor says it’s okay for you to exercise, keep moving.  Even if it’s just a short walk around the room.  Ask for a referral to a physical therapist.  

 

Drink more water.  Stay away from the soda, and stay hydrated.   I’m not saying quit everything.  Have an occasional soda or alcoholic beverage.  Know your limits.  Learn from how you feel after putting these things into your body.  If you feel awful after having them, remember how it made you feel.  At age 43, I do not know how to even order a drink.  I recently had my first Smirnoff Lemonade.  I am very thankful cheap alcohol was not this tasty when I was in college.  I drank one, then went to a different bar and ordered a vodka lemonade, and sent it back because it tasted too much like vodka.  I never said I was the sharpest knife in the drawer, but I did feel better the next day than I would have if I drank three Smirnoff Ice.

 

So, that’s my first post in the series.  If you have any questions, please leave them in comments, or feel free to message me on Facebook at The Mighty Turtle’s Facebook page.  If you ask medical advise, I will remind you to ask you doctor.  If you would like to know how something specific affected me, or a topic suggestion please don’t hesitate to ask.

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.

Click to see the clips… They only gets funnier  

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.

 

 

 

Back To The Beginning, Again. An update about my exercise activity with scleroderma.

This a follow up to a post I wrote in 2012.  I almost started fixing typos, but realized what it really needed,  was an update.  I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication.  There was a great deal of damage done to my body, including my lungs that are scarred, known as pulmonary fibrosis.  


Lesson Learned.

After spending 45 days in the hospital to save my foot, I am now faced with the challenge of returning to exercise on a routine basis.  As much as I would like to go back to Krav Maga class, this will not be happening anytime in the near future.  I blame the horrid infection of my foot on just thinking about training for a 5k.  All kidding aside, the infection was bound to occur, but it may have been prevented from such a drastic course with proper shoes.  I thought because I was feeling so great, I could take a chance and wear something more stylish.  That was my mistake.   Now, I have this wonderful reminder to not push that good feeling.  Message received, Universe.  Message received.  (You can’t see this, but I just looked at the sky, raised my hand, and impotently shook my fist in rage.)

 

 

Back to one, deep breath

One of my biggest lessons, of many from this past hospital stay is there is no such thing as a last chance for me.  I changed my way of thinking of my hospital stays.  I have always understood that they will be part of my life, but when I would leave, I would think, “This stay will be the last time.”

 

This time, I had enough time to realize that there were so many things I could not anticipate, that I cannot think of any time in the hospital as my last time, and my recovery my last chance.  Yes, after 20 years I understand that I will get knocked down, but I’ll get up again.

 

Hope helps, but knowing I’m going to recover helps more, because it’s not a matter of “if” it’s “when” I feel better.

Of course I cannot predict the future, but I can have a positive outlook.  Not unrealistic, just more than hopeful.   never hope I’m going to get well.  I know I am going to get well.  And even though we never really “know” everything, it doesn’t hurt to act as if I will have a full recovery.  People would say to me  “I hope this gets better for you.”  My reply was usually, “I know it will get better.”

 

Positive thinking helps, but I must do the work it requires to get better.  There is nothing wrong with being stubborn, and I am living proof.

 

So, about the exercise…

I’m working with a trainer to build my strength from the inside out.  Along with strengthening the large muscles, I must work on the small ones as well, especially my core and upper body. Right now, I am using light weights and rubber bands.  These exercises may look small, but I can feel he work I’m doing.  The exercises I do are no impact where my feet are concerned, and since I have lots of work to do on my core, there is plenty to keep me busy until I can do a full plank again.

 

It’s not easy, it probably won’t be the last time I need to restart, but starting again is so worth it.

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

I have returned to Krav Maga Classes.  I kept putting it off because I was so busy, I felt it would be too much.  Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class.  I am working to make more time for it, but easing back into it is the best choice for me.  I love how my instructors help me adapt, and do things I never thought possible.     Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort.  I feel balance balance between my inner warrior and facing the world calmly.

I also do yoga at home using DVD’s.  I plan to  join a local yoga collective and attend classes once my budget is squared away.  Today, I will do a short yoga DVD.  I need to work on m deep breathing.  Not exercising January and February while I moved has made a difference in my lung capacity.  I can’t take those deep breaths.  After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent.  I don’t just feel the flab.  The muscles in my chest become stiff and restrict the expansion of my lungs.  So, there’s that.  And here I am again back at square three.  Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise.  Now, at Square 3, it’s time to make these activities consistent.  I have such commitment issues, bit I am very optimistic about this one.

Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts!  Yeah, I’ll post pictures in June- maybe to help raise awareness.  If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body.  Look, the world is filled with beautiful women of all shapes and sizes.  When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research.  While I’m still here and looking good on the outside, why not use my body to raise awareness?  Look out Curvy Girls!

Have a great day!

For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:

The Scleroderma Research Foundation

Bounce to a Cure

Beyond The Mat: Divine Order.  A post form Temecula Yoga Collective’s Blog about how we are all connected.  Excellent post!

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion.

Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” 2, but nothing out of the ordinary.”

I don’t quite understand the whole pain scale thing.  I can maintain a conversation while  tears pour out of my eyes.  It may be a learned response or capability because pain is such a part of my life.  I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.

That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done.  My hands hurt constantly.  There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin.  I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”.  It’s going to exist no matter how much I talk about it.  It’s not going away.  I want it to, but it’s not.  And yes, I ignore suggestion to use things like Dragon Speak.  It’s a great program, but it messes with my thinking.  Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff.  I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.

I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask.  My point is, I’m in pain.  I feel better when I move.  I have found a way to move with my pain, but focus on my activity.  The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?”  If it’s my normal, I have my own way of focusing on the task.  If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help.  When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt.  Ways that I can do an activity and achieve an objective without hurting myself.

So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.”  Everyone’s experience with loss is different.  Where I am was not an easy place to get to.  I am fortunate enough to have great mental health care from the Veteran’s Healthcare system.  I hope someday everyone will have access to the great healthcare that I do.  I write because I want people to know it exists.  It was an uphill battle for me to get it and I want others to get it without the fight.  Access to healthcare is part of the big picture of surviving the chronic illness fight.  Staying active is a personal fight but it can be done.

Okay, I hope that made some sense.  I need to get going.  I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments.  Staying active while in pain isn’t easy.  pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life.  If you have so something that helps you “live with your pain”, please leave it in the comment section.  And if you would like to tell me that this was not helpful, I want to know that too.  Thanks for reading.