Divorce: The Best Thing to Happen to My Son’s Development

I had been married nearly eleven years when I told my husband I wanted to separate a while.  We eventually divorced, with all the ugliness that comes with such an event.  Then, things started going well between us, but it didn’t happen overnight, but we definitely have a better relationship now, than when we were married.

My ex-husband and I were forced to not only stay in contact, but learn to work together for the sake of our son.  It wasn’t easy.  There was hair pulling, biting and temper tantrums; and my son wasn’t so happy about it either.  Then, one day, I did the unthinkable.  I told my ex that I thought it was best my son be with him full time.

It was not an easy decision, but it was the right decision.  My son’s father and I have joint custody, so the first few years, we split my son’s time during the week.  That meant half the week he was with  me, half the week he was with his father.  It was a rotation of four days on, three days off, and the next week was three days on and four days off.  Funny thing about that rotation, that was the watch schedule for my job as a Radioman, in the Navy.  Four days on, three days off, four nights on, three days off. then back to days to do it all again.  My body and mind never really adjusted to that schedule, and I was in my 20’s.  That same type of schedule was not working for my son either.   I had even moved into the same housing track as his father, step-mom and step-sister, but you know, my son needed consistency.  Sure, it was great to be so close.  And for us as his parents, it was nice to be able to be with him half of the time, but my son switching homes every four days reminded me of my childhood:  Not really feeling at home anywhere.

Growing up, we moved a lot.  I went to eleven different schools in twelve years; six elementary schools, two junior highs and three high schools.  I know the name of every school, except for kindergarten.  That was somewhere in Fullerton.  I felt at home at my grandparent’s house, because that was where we lived most.

When my parents first divorced, I saw my dad more.  We would go with him on Sundays  to Fountain Valley Fun Center and ride bumper boats, play video games and drive the track at Malibu Grand Prix.  It was great!   My parents worked things out between them, mostly.  It was far from perfect, but aren’t all parents winging it?  I love my parents, and I would get frustrated with their choices and sometimes I still do, but since my own divorce, I have become less judgmental.

My son’s rotation was not working for me either.  When I didn’t have my son, I stayed home because I was broke.  I spent my money on the three bedroom house I rented and things for and to do with my son.  I realized this was unhealthy, when a friend came to visit and I could not hear out of my right ear.  I hadn’t noticed it, because I was constantly alone when not with my son.  I went to see my doctor about my hearing, and I had so much wax build up, I could not hear out of my right ear.  That’s when I realized I needed to make a change, because I did nothing when I wasn’t with my son.  I watched TV.  I wrote in my blog.  On the surface it seemed like I had a life, but when people asked me what I liked to do, I had no answer.  Then one day I realized that my son and I would both do better, if he were with his dad full time.

It wasn’t because I thought I was a bad mom, but because I felt it was what was best for my son.  In addition to being broke, I had doctor’s appointments and hospitals stays.  The nearest medical facility that could handle my complicated diagnosis, was forty-seven miles away.  My commute could be anywhere between fifty minutes to three hours, one way depending on traffic.  I was constantly late to pick up my son, or to his school events because of traffic.

When I told my son’s dad I thought it would be best form my son that he were with him full time, I had expected a fight, but instead it opened up our communication and cooperation.  Look, it wasn’t perfect at first, but my son not only had a step-sister, he lived with his step-sister.  They had met at age five.  They are nine months apart and had already bonded as brother and sister when they were together, but once he lived with her full time, his behavior improved, and he seemed more relaxed.

Of course, I got the expected criticism from some family members.  One aunt even said to me, “Karen, how can you let another woman raise your son?  How is he going to know who his mother is?”

Of course, my son was sitting right next to me, playing Minecraft on his iPad.  Because family will always question your parenting, right in front of your child.  That’s their way of showing you they love you, right?   I looked at my son and said, “Jake, who’s your mommy?”

“You are.” He replied without skipping a beat.

Then my cousin spoke up, in my defense, and a few other people did as well.  I felt loved that day.  My great aunt asked me an honest question that was hurtful, and my cousins stepped up in my defense.  I was feelin’ the love that day.

Until recently, I felt I had to explain why I was not with my son full-time.  I felt I had to explain that my son was with his dad and step mom not because I had gone off the deep end, or have a meth addiction.  I was so insecure about it, I found myself standing on the sideline of my son’s flag football game, explaining to other parents why I’m not crazy.  Sounds crazy, right?  You betcha!

I would explain my need to be near a medical facility and I needed a hobby so why not stand-up comedy, but that happened only once at flag football.   On my way  back to LA after attending my son’s game, I looked over at the eleven year-old, tucked in under a down jacket I bought in the 1990’s, sound asleep.  He had a great game, a great day and a great week. I no longer felt guilty.  I felt relieved.

You see, even though I was in LA, his step-mom posted pictures on Facebook.  Every time I saw a picture of him, I saw a happy, confident kid.  I thought it was just me.  Of course, this wasn’t just me.  This past Friday,there was a pizza party after my son’s game.  I sat next to my son’s step mom, next to her was my son’s dad, who was also the team’s coach.  Across the table was who I thought was the assistant coach, and his wife.  It turned out, who I thought was the assistant coach, was someone my son’s dad asked to volunteer to help him coach, which is something I always liked about my son’s dad.  If he didn’t know how to do something, he would find someone who did and learn from them.  Who I thought was the assistant coach, was actually a professional trainer of football players grade 1-8.  Does his opinion really matter to me?  Not really, except for that night at the pizza party.

This trainer and my son’s dad were talking about the game the team had just won.  My son is the center.  For those of you who know nothing of football, that’s the player who hikes the ball to the quarterback.  The coaches have a playbook and some are referred to as plays for individuals who receive the ball.   I had only recently heard my son Jake was a receiver in one of these plays.    The trainer said to my son’s dad, “Be sure to use Jake’s play in the next game.  He’s getting confident and he’s ready.”

Now, that seems like a pretty generic statement.  But to a parent like me, who like all moms have a healthy amount of Mommy-Guilt, in addition to the guilt of not personally caring my son every day, I did a little happy-dance in my head.  (I hope.  I am pretty sure no one else saw me dancing in my seat.  One can never be too sure sometimes.)

I was excited to hear from a total stranger, that my son was becoming more confident, and ready to take on new challenge  That even though I left my son’s hometown to pursue what some may be viewing as a midlife crisis, my son was growing up healthy, happy, confident and a kid who knows he’s loved.  As a parent, that is the best possible outcome, no matter what the custody arrangements or income.

So, next time you see a family and the ex-wife and step-mom get along, and it seems nontraditional to you, please consciously replace the word nontraditional with happy.  Because no matter what the family dynamic, a happy family is one that works together to provide what’s best for their children.

 

Healthy, happy, confident, loved and knows he’s loved. Who can argue with reults like that?

People Who Claim to be Pro-Life Confuse Me.

Douchebag: (Doo-sh-bag) n.  One who works to outlaw safe medical procedures for women while insisting vaccines should be optional.
Use in a sentence:  Sean Hannity  should visit countries where vaccinations are rare and see what the measles do without treatment or prevention.  Sean Hannity is a Douchebag.

The term Pro-Life, is a like a dog whistle, but instead of sound, the Pro-Life Whistle uses identity.  Those who identify themselves as Pro-Life, hear the words, ‘Pro-Life” and start arguing against any idea that suggests women who have abortions are not cold-hearted baby killers.  We who have have had abortions are not cold-hearted baby killers.  We don’t wake up and decide to go have an abortion to earn points  on a punch card to receive a free one on the eleventh visit.  Abortion is a medical procedure.  And for many women, it is the dreaded choice after exhausting every option to have a healthy baby, or save our own lives so we do not orphan the babies we already have.  Also there’s a choice we make to have an abortion because it is what is best for the person making the choice.

As someone who has terminated a pregnancy, I speak from experience.  It is absolutely none of your business why I had an abortion.  I’m really only admitting it because we are still fighting to keep it legal for 40+ years.  That, and I don’t give a rat’s ass what you think of me because I decided to do so.  I will give you a hint:  My birth control failed, there was no Plan B option at the time, I was in my 20’s and it had nothing to do with saving my life.  I have heard people say things like, “Women use abortion instead of birth control.”  In my 44 years, I have met only one woman who  does not use contraception of any kind and has no qualms about terminating a pregnancy if one happens through carelessness.  This does not make me an expert on abortions, but that does tell me how few people I have experienced on my path, who have done that, and that is her right.  I don’t have to agree or disagree with anyone when it comes to their own body.  The people who will pay the cost of restricting rights to safe and legal rare procedures, are all women.

If you don’t believe in abortion for any reason, then don’t have one.  Please stop spouting misinformation and harassing women who are forced into situations you cannot possible imagine.  Please get out of our ovaries and do something that will actually help children; like funding free lunch programs, free day care or preschool programs, and domestic violence treatment and prevention.  Don’t hide behind some passage in The Bible and dare to call yourself a Christian, then  mandate pain and suffering onto fellow humans.  Yes, I have terminated a pregnancy, long before I even had scleroderma.  If I were to get pregnant today, I would terminate the pregnancy because I will most likely die,  and honestly, even if new information came about that revealed I would be fine, I’d still terminate the pregnancy.  I don’t have to justify it.  I can’t rely on oral birth control due to high blood pressure likelihood, and risk of stroke.   I cannot risk an invasive sterilization procedure because my body destroys its own cells.   I must rely on a thin piece of rubber and if that breaks, I have Plan B to keep a potentially fertilized egg from implanting itself into the lining of my uterus.    It’s my body.  How dare you judge me for decisions I  make regarding my own well being. If you get pregnant, do what you feel is right.  Stop trying to regulate my ovaries and uterus and proclaim vaccination should be a choice.  T here are diseases that are killing people who are suffering and in great pain.  Doing something to help those in need of a cure, and need assistance while waiting.   Stop obsessing over zygotes and fetuses.  Take care of those who are out of the womb.  Stop calling sick people lazy and vilifying the poor.  Stop watching Fox News, and pick up a book.   Don’t regulate my ovaries and proclaim vaccinations should be a choice.

All Aboard The Mommy Guilt Train!

 

Once upon a time, a mother refused to leave her hospital bed to visit her son in the NICU, and emotionally scarred him for life…  A fairy tale. 

A pregnant woman was laying still on her left side, because she was told to do it.  She was told to do so many things to to keep her blood pressure down in the past forty-eight hours.  So many things, she would not have flinched if a kitchen sink whizzed by her head.   The medical team, her mom and her husband were doing their best to stay calm, but she could read the fear in their eyes.  There was talk of    preeclampsia she was not meant to hear, spoken softly in that tone people use for the word, cancer.  Her unborn  baby’s heart monitor kept the rhythm, as nurses and doctors appeared to dance in and out of her room.

The expectant mother’s blood pressure was so high,  she was blind in her right eye.  She was a patient at   one of the best hospitals in The United States, possibly the world.    On the third night of her stay, blood work had shown that her organs,  were near the point of no return before she might fall into a coma and never wake up.     The only way to save the life of her and her son, was to end the pregnancy, which meant her baby would be born eight weeks early.

Her husband was met in the hospital’s lobby by a nurse, he was lead to to operating room where doctors were standing by with scalpel in hand, and began the C-section as soon as they held hands.  A baby boy was born,  as  healthy as an an eight week premature baby could be.   He needed help breathing and was taken to the NICU, and his mom was taken to the recovery room.   The following morning, after a rough night, the baby’s mom  was back in her room  Her husband and mother took turns checking on her, while they stayed with her son in the NICU.

Her husband stopped in her room before the doctor came in, and whispered to her “Don’t feel like you need to do anything.  Jake is fine.  Get well first.  Don’t let them guilt you into anything.”

This close call reminded him of how in the past six years, his wife had been legally dead, once, almost dead another time, and the night before; nearly died of organ failure.    Her husband was acutely aware of how rare pregnant women with scleroderma are, and even though her doctor might recommend activity, her doctor is basing that encouragement on  the hundreds of moms getting up to go visit their children in the NICU after delivery, who do not have an autoimmune disease.

Later, her doctor came in to check on her.  He told her she was doing better than expected, but her blood pressure was still dangerously high. The doctor then told her that a nurse would escort her down in a wheelchair to the NICU. The doctor wander her not to get out  of the wheelchair, because her blood pressure was still dangerously high.

She replied, “I’m going to stay here and rest.”

The room stopped moving.  All activity seemed to stop.   Maybe the in entire hospital because everyone, including the  window washer outside, stopped what they were doing, and turned to look at her.

“You really need to go to the NICU to bond with your son right away.  You need to do this for his sake.” Said her doctor.

She paused a moment, and second guessed her decision to wait before going to see her son.  She wondered if her son would truly be emotionally scarred  if she did not a  risk stroke,  organ failure and then death,  to go downstairs to sit in a wheelchair and hold her son.

She thought about it a moment and decided that if she could ask her son what he thought, he would advise her to rest to  avoid the risk of further danger.  She pictured her son, as she saw him immediately after delivery, held by two gloved hands and some arms and saw the most beautiful mucus-covered lizard, that ever was, wink at her and say, “Mom, shut up and lay down. Get some rest,  I’have got this.”

She opened her eyes to look at the picture her husband brought, and taped to  her bedside table of her clean son.   He no longer resembled a lizard.  He reminded her of  a loaf of bread that wasn’t  finished cooking, and it was her  favorite face in the world, and thought to herself, “That boy was with me every minute of every day, in my uterus nearly six months.  He is not going to be any less bonded to me, because I stayed up here and got more rest… Or will he?”

That was her very  first second guess as a mom. She wondered if her son really could be scarred for life. She had been a mother only nine hours,  and the doubting and guilt had begun.   She had boarded the Mommy Guilt Train. The longest, non-stop train ride there was, is, and ever will be.

 

SPOILER ALERT!
After  some rest, she went to the NICU. Does he look emotionally scarred to you?

The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?  

Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day.

It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son.  Bill Murray’s character, Phil was having his worst day ever, over and over.  Things eventually got better for Phil, but not until he figured  out how to be happy, no matter what his circumstances.  (Yeah, I know it’s an old movie and you probably got this message back in the 1990’s, but this is still new to me.  So please humor me and read on.)

I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994.  Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend  in my heart.

Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma.  There, I said it.  I don’t want to get together with other patients who have scleroderma simply because we have scleroderma.  I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal.  Anything but talking about living with scleroderma.    And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma.  You see, it’s not really about the other people in my life.  I just don’t like being in this situation.

Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it.  My problem was that I hated my environment so much, I wouldn’t stick around.  Have you noticed I have been moving every single year since 2009?  My family has, and I just got the memo.  I’m running from something.  But this year, I decided to stop running.  hen I watched Ground Hog Day for the 5oth time and related.  I still haven’t figured it all out yet.  But I have figured out I too could be that “nice young man from the motor club.”  I’m just not there yet.  And that’s cool too.  Or maybe I am there and I don’t know it.

I can fight situations all we want.  But then the time comes when I  need to stop driving angry, and today will be tomorrow.  Confused?  Me too.  So, why not  curl up on the couch and watch a classic Harold Ramis movie.  it makes everything better.  Have some popcorn, and don’t be stingy with the butter.

 

No One Wants Scleroderma

Today was the 12th annual, Stepping Out to Cure Scleroderma walk by the Southern California Chapter of the Scleroderma Foundation.  It was a roaring success.  I am in awe of these amazing people who get together every year not just to walk, but encourage those fighting and remember those we have lost.

This year, I arrived at noon.  I could see people dressed in teal shirts hugging their goodbyes and  packing their camping chairs and tarps into their cars.  Once again, the walk was a wild success.

Murphy watching the Pride Parade in Long Beach a few weeks ago.  Forgot to get pics at the park.

 

I met up with some friends I only see at walks.  It was great to see them and was really the only reason I went.  But isn’t that why everyone goes?  To show support for each other and visit?  My feet had been hurting, and I didn’t feel much like walking.   Yet I still  took a walk through the park with my dog, Murphy.  I felt guilty about not coming to the walk earlier, because as much as my feet hurt this morning, it felt good to be walking.  As I walked away from the festivities, I felt better.  Then, I realized my true reason for not getting to this walk on time.  The truth is, I don’t want to be there.

 

 

 

I enjoy the people.  I enjoy the food.   I just don’t want to be there as a scleroderma patient.   And this doesn’t feel like a pity party, it just feels honest.  Look, no one there wants to be a patient, or know someone who has it, they just handle it more socially than I do.  And friendlier.  And less whiny-er.

I don’t like walks because I don’t want to be a patient.  Maybe it’s more about my social skills.  Or that most of my life involves doctor appointment.  I have missed so much time with my son because of appointments and tests.  This is the last week of school for my son.  I won’t be able to attend his awards ceremony because of one of four appointments I have this week.  Yet, I’m still able to make time to do stand up comedy.  It’s really the only thing I have been doing not related to medical appointments, without my son.

It’s funny because I go to my classes, and perform to get do something not related to scleroderma.  Guess what my topic is in my routine?  Scleroderma.  WTF??  I have to talk about it because my hands are obviously damaged and it needs explaining.  And I have to talk about it because it is at the forefront of my mind.  I’ve gotta get all of this our of my system so I can talk about something else, for corn’s sake!  But  in order to talk about something else, I suppose I should do something else.

If you skipped to the end…
I don’t want to have scleroderma, or live with the damage it has done.  I would like to change it.   I hope I don’t get snubbed at walks because I hate going.  It’s really not about the event itself.  Not liking to be at events is about not wanting scleroderma.  Duh.  No one wants scleroderma.

 

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

The “Bromance” of Vanity & My Lungs

I have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them.  My lungs used to complain, but now they are in compliance.

It used to be really hard to exercise.  Walking across the room took effort.  Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem – sarcoidosis- was identified as the culprit, things got even better.  After years of difficulty breathing, I was finally diagnosed with sarcoidosis.  The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom.  But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell.  This restricted movement of my lungs so they could expand, thus creating difficulty breathing.  Now I am on the right medication to keep those granulmas in check.  Stress does make those granulomas swell, so I also have sedatives handy.  How can I face what I need to do in any situation if I have trouble breathing?  Don’t judge, it works.  I have to be able to breathe or defeats the purpose- of everything.

Now, back to the pulmonary fibrosis:  That’s courtesy of scleroderma.  My lungs are scarring, but I am keeping my lungs working by making them work.  I have a use it or loose it mentality.  Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental.  Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies.  If you tell yourself your dying, that’s true whether we have a positive attitude or not.  We’re all going to die eventually.  Some of us just have an idea how.  And even that’s inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that.  So, can we really control what life throws at us?  For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no.  But we can control how we face them.

So, how am I facing the ongoing progression of my lungs scarring into fibrosis?  I am working to sculpt my ass into perfection.  That’s right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine.  And I don’t mean unhealthy looking either, I want a fine ass I can be proud of.  The side effect:  I am eating healthier- no, I’m not starving myself.  I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday.  Nthing suer complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I stated with deep breathing.  I even wrote a post about how deep breathing is exercise.  This is an updated version.  I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress.  My condition is stable with medication, but I know I need to do more than medication.  Not just for my symptoms, but for my own sanity.

Some of you may not know this, but I have a tendency to be a control freak.  When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them.  I continued to drink and occasionally smoke.  Then, once I quit those, used my energy to point out what I perceived to be everyone else’s problem.   Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane.  (Determination of my sanity is entirely subjective by my own observations.) 

Then came a time when I took a look at what my body is doing and for lack of a better term, freaked the
f**k out.  Then, I remembered the most important thing I learned from The Hitchhiker’s Guide to The Galaxy and stopped panicking.  Reading the book Illusions, by Richard Bach has helped tremendously as well.  My point is, it’s all about perception.

picture of a butt
Everyone needs a goal. This one may be a little vain, but it’s more fun to work for this than to think about keeping lung tissue moving to keep it from hardening. Enjoy the eye candy borrowed from @regretfulmom.

So, the family friendly term for exercising is: I do it for my health.  The truth is, I’m a bit vain and I’m using that to motivate me to exercise.  I want a booty I can bounce a quarter off of (see, vanity isn’t all bad, it helps me breathe.) The “secondary” benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake.  Right now, I just want to look good on the beach.  Because that’s where I want to be:  Living in the now.

 

A Kid’s Book About Scleroderma

‘My Mom’s Special’ By Andrea Oakland

By Karen Vasquez

One of many challenges faced by patients with scleroderma:
The effect on the children of patients.

The story is told in the voice of a young daughter about daily life with her mom, who has scleroderma.  There is no talk of flares or emergency room visits.  I love that about this story.  There are plenty of stories of complications and very few are just about a regular day with scleroderma.  The scary stories are a familiar occurrence to scleroderma patients, but they are only a part of the story.   The long haul with scleroderma really is about acceptance and finding a way to be a part of life with loved ones.

The beautiful illustrations show the pigmentation changes, hand contractures and facial features in a gentle way.  Changes from scleroderma are rarely shown in such a gentle light because it is hard to photograph. These illustrations are another welcome change and by the end of the book, the distinctions between characters without the facial features of scleroderma is difficult to notice.  As though the illustration makes those features look “normal”.  For a scleroderma patient, that is normal and it’s nice to see that blending as opposed to the often harsh distinctions shown in photographs.

Yes, this is a fictional tale, but kids love to help.  I see it in my son and I have seen it in other children of parents with or without scleroderma.  The bottom line is no matter how sick we get, how crazy things seem to be and how much our kids complain about taking out the trash, they love us and they will help.

We need more stories like this to remind patients and their families that life does not end with a diagnosis of scleroderma.  Raise awareness with this book.  It’s about Scleroderma, and the very capable child in all of us.

 

“My Mom’s Special”
Written by Andrea Oakland
Illustrations by Meredith Allister
For more information:
Get your copy of My Mom’s Special. Here  All proceeds benefit  the SRF research program.  It makes a great gift or donation to your local library to help raise awareness.

A Short Updated Explanation of The Mighty Turtle

Adapt, Overcome, Rinse, Repeat.

Not necessarily in that order.

Now that The Mighty Turtle has a renovated home, I would like to explain the goals and purpose of this website.  Some of you remember it from back in the day as Scleroderma, Sarcoidosis and Box Wine.  I still have the Facebook Page of the same name, but changed the blog name so it would be easier to remember.  I picked “turtle” because turtles out lived the dinosaurs by adapting.  They moved to the sea, learned that jellyfish are delicious, and know how to cruise The Gulf Stream like a champ on loose bed of kelp.  The only thing anyone remembers from Scleroderma, Sarcoidosis and Box Wine is the “Box Wine” part.  By the way, I stole the “Box Wine” idea after listening to hours of listening to The Stephanie Miller Show Podcast driving to and  doctor’s appointments between LA, Riverside and home.

Overall it is a blog, but there are resources and a store as well as a useful resource about life as a member of the human race living with some chronic illnesses, being a parent and 100% service connected female veteran.

The Mighty Turtle adapts to overcome.

My diagnoses  are Scleroderma, Sarcoidosis, Rheumatoid Arthritis, Depression and complicated damage like pulmonary fibrosis, barrat’s espohagus and Joe my God, the list ends here.

I write to raise awareness and hope to save others time by sharing about how I spun my own wheels.  In addition to written posts, I have a video series called, Scleroderma on the Fly.  This series consists of facts and helpful tips about scleroderma.  Each video after Episode 1 will be two minutes or less and will cover only one topic.  This is to provide a quick go to source thats easy to understand and easy to repeat.  I want those who watch to walk away from each episode knowing the topic.

Feedback is always welcome.  I especially need to know if there is something I talk about that does not translate or you as the reader or viewer need further explanation.  I am my own editor.  Of course I enjoy positive feedback, but critical feedback will only help me become a better messenger.   If it’s the information I give is ever confusing, let me have it!

I support research and fundraising organizations I know about and find credible by sharing their information, donor pages and more. I  am not connected to the organizations I endorse.

I write about current events as well as medical experience. There is more to life than our diagnoses. It took years of therapy for me to realize I was not my Scleroderma. I want to share that message. Though my opinions will be shared, the only thing we need to agree is that diseases like Scleroderma and Sarcoidosis need a cure and patients need better treatment while waiting for one.  (I’m a little tire of waiting.  Did someone just start playing Muzak?)

Thank you for taking the time to read about this website/blog.  I hope you will find it a useful resource and share posts when you feel they are share-worthy.  It doesn’t matter your diagnosis and this page is not just for patients.  It is for patients and those who love and care about them.  Coping is tough as both a patient and loved one.  The greatest way to torture a person is to cause suffering to those they love the most.  Not sure?  Ask a parent.   Diseases have symptoms in common.  Coping is universal because we are in this together and we can help each other by learning from one another.

Bob Saget: He Knows Scleroderma

So, maybe you’re skeptical about hearing what Bob Saget has to say about Scleroderma.  Maybe you’re thinking,  “What could an actor/comedian possibly have to contribute to the scleroderma patient community?”

Well, for one, he lost his sister to the disease.  Also, he’s on the Board of Directors at the Scleroderma Research Foundation.

Sure, scleroderma is hard for patients, but what about those who love them?  The truth is, it’s just as difficult for them to watch, as it is for us, the patients-  to  fight.  I don’t mean to make the patients’ fight appear less painful or easy.  Let’s face it, patients know how painful it is and I am stating the obvious.  My point is about the emotional pain of having to sit and helplessly watch someone fight one battle after another  for their life.  Sometimes, those doing all they can possibly do, have to watch those they love lose their fight.  Like many brothers would do, Bob Saget did all he could to help his sister, yet still lost her to Scleroderma.  Bob Saget is not alone.  He just happens to have a microphone and a camera and is using them to raise awareness and funds for research.

I have one brother and one sister.

Karen Vasquez with her brother and sister at a caping trip circa 1996.
Me, my brother & sister circa 1996 before the free face lift and nose job. It’s the Scleroderma Gift With “Purchase”

I am also a member of an insanely large extended family that requires a map for visitors when they dare come to a party.  My family and friends  love me very much.  Since my diagnosis in 1994, they have been doing everything they can to help me.  It is hard for me to watch them feel helpless.  I feel loved but I also sense their frustration.  As a parent, if my son had to fight a disease, I would cut off any part of my body or gladly take his place to make him well.

Friends and family members need a cure just as much as patients who have scleroderma.  Bob Saget is going to help get the message out.  Tune in this Thursday at 11AM PDT. I will be watching and listening  You’ll need a phone and an internet connection.  Visit the Scleroderma Research Foundation’s website to register: www.sclerodermaRESEARCH.org.