How To Request Blood Tests Before a Doctor’s Appointment

It’s easier than you think!


Patients with chronic illnesses, see specialists for routine appointments four times a year.  Many, like me, are on life extending drugs that can cause damage to kidneys, liver and cause infections, so four times a year becomes a normal routine.

 

I used to be upset because the blood test results my doctor would be reading to determine the course of my scleroderma and sarcoidosis, was often 3 or more months old.  In some cases, as old as 1 year.  That’s because I developed a routine where I saw my doctor first, then went to the lab to get my blood work, then 3 months later meet with my doctor and talk about 3 month old blood work, but have new symptoms that were less than a month old.  One day, my local nurse practitioner I saw while using traditional insurance, suggested I call two weeks before my next appointment and order my own blood work.  So, I tried it.

 

First, I tried calling.  The office staff did not understand what I was trying to do.  Because even though I had a order from three months prior, that order had expired and a new one needed to be made.  And they could not understand why a patient would call in and request her own CBC, Chem Panel and Sed Rate.  I was not talking like a patient.  I could sense their frustration over the phone.  Rather than get angry, I went into the office and made the request in person.

 

I had no appointment.  The waiting room was packed.  It was 2005, and the usual wait for a doctor’s appointment was two hours.  My ex-husband and I owned a small business together, which made it possible to have insurance, but that’s a whole other post….

Temecula and Murrieta had grown so fast in the housing boom and medical practitioners were up to their elbows in over bookings.  I stood in line at the reception desk and simply said, ” Hi, my name is Karen.  I have an upcoming appointment with Dr (Name withheld) and he will need current blood work.  May I request an order for blood work  from him?”

 

Yes, they did look a little confused.  The receptionist asked me to take a seat and she would be right with me.  So, I took a seat.  I expected to wait so I brought a book.  This was before tablets.             (Could we call that Post Book Era or PBE, maybe  Pre Tablet?  Whatever.)

 

Te receptionist called me back to the desk.  She asked me to write down my request and she would call me when the order was ready for me to pick up and take to the lab.  (This was also before lab orders could be sent electronically.)  So, I wrote a friendly greeting, told my doctor about my idea and listed the tests.

 

A few days later, I received a call from m doctor’s office and was told my lab orders were ready.  A week and a half later, I met with my doctor for my “routine” appointment.  He was impressed by having such current blood work.  To be honest, I was happy to be talking about what was going on with me right now, and not three months ago.

 

I made it my routine to call his office and the receptionists knew exactly what I needed, because I went in person and explained what I needed.  It took up extra time, but saved me time in the long run.  My phone calls would sound something like this:

“Hi, this is Karen Vasquez.  I need to get an order for my labs.”

 

The reply:  “Sure Karen, what tests do you need?”

 

“I need a CBCChem PanelSed RateANA and I think it’s time for my PFT’s. Can we get an order for that as well?”

 

“Sure, Karen.  Talk to you in a few days when the orders are ready.”

 

Now, I manage my scleroderma and sarcoidosis and receive treatment at my local Veteran’s Hospital.  Labs are in the computer, no calls need to be made.  I also know that many with scleroderma, or many with a chronic illness (or two) do not enjoy the care I get.  I am very lucky to have access and I know it.  I hope that my posts help others become their own best advocates.  It;s possible.  It’s frustrating, but  there are so many different types of chronic illnesses that share many symptoms, we need to know what we need, so that our providers get it right.

 

So, if you skipped to the end:

 

Request your lab orders before your doctor’s appointment is you want to.  Don’t be afraid to ask or speak the “language” your doctors and providers do.  And if you have a boyfriend who tells you to “stop talking like you are a doctor, because you aren’t.  Stop trying to act like one.”  He’s threatened by your intelligence.  His reptilian brain has not evolved to match his human body.  Break up with his dumbass.   Just sayin’….

 

Links in this post:

Mayo Clinic

ANA Test

Pulmonary Functions Test 

CBC


To help cure scleroderma, please visit Bounce to a Cure.


To learn about Scleroderma Research, visit Scleroderma Research Foundation founded by scleroderma patient Sharon Monskey.


To find a scleroderma support group near you, visit The Scleroderma Foundation.

 

Also, check out Scleroderma of Trinidad and Tobago.  


So many orgs, please check out The Mighty Turtle on Facebook for more.


Bounce to a Cure for Scleroderma

Man ding trick on a pogo stick

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa.

This year, James will attempt to break another world record at Pogopalooza 10 in New York.  I will be cheering him on from California and sharing about his progress.  Please visit and like Bounce to a Cure’s Facebook page & like and if you are twitter, you can find him @BouncetoaCure.  He is using his talent to help scleroderma patients by raising awareness and funds for scleroderma research, for the Scleroderma Research Foundation.

I admire James and I am so honored to be working with him to help spread the word!

Visit his website, Bounce to a Cure.  He’s working with some partners you might recognize.  I don’t want to give too much away, but you may see a turtle there…

Why I Am Not Scleroderma

Dog barking with caption: "some days, we just need to get our bark on."

 

Yesterday on Facebook, I expressed my disappointment with  I.Am.Scleroderma campaign.   I do like and support the foundation who did it, because so many patients benefit from their work.  I am not happy with that campaign. You might ask, why not send a letter?  Well, I had a thought, expressed it on Facebook and wondered if other patients felt the same way.  Plus, I don’t post to make any friends,  I just post honestly.  I was told once I should think in a more marketing perspective by a former so-called mentor.  We no longer speak and it was a very smart decision, but that’s a whole other post.

I write to get conversation going about not only scleroderma & sarcoidosis, but also associated conditions like  pulmonary hypertension, Raynaud’s Phenomenon and mental health.  So, in the spirit of Scleroderma Awareness Month, and my slacking last year by not speaking out when the I.Am.Scleroderma campaign started, I want to explain to you why that statement offends me so.

This is not an attack on The Scleroderma Foundation.  This is my disagreement with their choice of wording for a campaign.  Since deciding to independently volunteer to raise awareness and have no attachment to any non-profit, I have the luxury of speaking from my heart, and not from a marketing perspective.  I have nothing to loose by sharing my feelings, because that’s all they are, my feelings.    They will not buy or sell anything.

Anyone who sees me is free to cuss me out for saying what I feel about the meme.  Please comment.  I will moderate, but as long as there are no racial slurs or snake oil, I will make sure it is visible.  See, it’s not the sharing that was encouraged by the campaign I dislike.  I read some great posts by patients and saw some great videos blogs as well.  The program is great, but the message is: I am scleroderma.  Putting a period between the words does not lessen the anger that statement creates.  I have sat n my feelings for a year.  One reason was I thought I just needed to calm down.  I haven’t.  So, here is why I am not scleroderma:

I had my first serious complication from scleroderma in 1996.  After two digital sympathectomies, I thought my hands would just return to normal and life would go on as planned.  It did not.  I continued to loose range of motion all over my body.  In the second semester of my sophomore year in nursing school, at then Viterbo College,  I was evaluated for physical fitness to continue on to do my clinical rotation.  As I reached down and found I could not touch my on toes, it became painfully clear that scleroderma was progressing faster than I ever imagined.  I think it was that moment that triggered profound depression and anger.

From that moment on, I didn’t say it, but I thought of myself as scleroderma.  I was diagnosed with depression for the first time and received counseling therapy through the VA in Sparta, Wisconsin.  It took weeks to get to the statement, but my therapist said to me, “Karen, you are not scleroderma.  You are not your diagnosis.”

Skip To the End
It was easy to say, “I am not scleroderma”, but it was not easy to feel.  My actions reflected my feelings for years.  I took a blow torch to many bridges and hurt people who tried to help me in ways I continue to regret.  I have forgiven myself, but I will always regret my actions.  I can’t change them and those actions in my past have opened my eyes to create a better future.

So when I say that I am not scleroderma, it comes from a place I worked hard to get to.   A campaign called, “I am scleroderma” makes me sick.  The name makes me sick.  I can in no way endorse it.  I want very much to share the blogs and videos from the campaign, but doing so shares the message, “I am scleroderma.”  I can no longer find the campaign on the website, but there is a a mess of scleroderma blogs with a Scleroderma Foundation logo with the words, “I.Am.Scleroderma.” on it.  I will read the post, but I won’t share it because I cannot share that statement.  Well I’d share it with a paid endorsement  and a disclaimer that it’s a paid endorsement.  (Hey, a girl’s gotta get her pedicure on when she can.)

Thank you for taking the time to read my  thoughts about a poorly named, but well intended campaign.  My wish when I started blogging in 2009 was to share the message with fellow patents of any illness that they are not their diagnosis.  I learned the very hard way, which has made me cynical at times.  I only hope this post helped to better explain my reasons for hating the name of it and not the foundation.  I will continue to walk and support patients.  I will continue to share their useful information.  I will also never hold back the way I really feel.  Also, I noticed I am unable to find that meme I.Am.Scleroderma on the foundation’s website.  Yay!!!

Cat with cherry tomatoes on paws and balanced on head.
Let;s take a deep breath and remember that we can’t agree on everything. Come on, you know it would be no fun of we did.

What’s The Point?

Detour sign

Will it really make a difference if we get scleroderma to trend June 3?

Let’s start with more questions.  Because isn’t the journey what it’s all about?  No?
Well how about this:  It’s what Yoda would do.

Don’t worry, Young Jedi.  As always, there is an option to skip to the end.  What is most important, is that you get the point.  I’ll never know you didn’t read it all.  I just want to relay a message and I hope that you share it.   (Scroll down to where the “Detour” sign was supposed to be.)  

I ask myself this type of question often:  Will it really make a difference if I write about scleroderma or any disease?

I don’t have thousands of followers.  If you look at my Twitter numbers, I follow more people, than those who follow me.  I follow patients, doctors, caregivers, foundations and celebrities, and I don’t care about my numbers.  I follow because I hope that someone may see something useful, and pass it on to someone else.  Does that make a difference?

If I judged what I do based on my numbers, I would have given up long ago.  Let’s face it.  I am not market driven.  And no matter how much I scramble to cover things like education or  travel expenses- or not, depending on what’s in the bank- I can’t see the rationale behind starting a non-profit.  Why?  So I can create yet another community that probably charges for access to information?  No, there are plenty of online communities that provide free access, information, and doing a wonderful job.  Plus, I like the idea of being able to have access to these communities.  It makes more sense to be a part of what’s going on instead of isolating ideas and people.  Plus, if I see a problem with a community, I can support those I know to be legitimate.  People are creating empires based on the suffering of others.  We can all work together, without membership fees, because most patients can’t afford them, and there are lots of donors who can.  We just have to get the word out to let them know we are here.

Who are “we”?

Well, we don’t have a catchy title like “cancer” after our unrecognizable names.  Yeah, I said it.  We need a cure for cancer.  We need access to care for all patients with cancer.  We have the capabilities, yet people STILL have to walk, raise money and rally around families to be able to afford treatment of cancer.  Does anyone else see the problem with this?  The problem is not only cancer.  The problem is that patients STILL have to fight and raise money to PAY for cancer treatment.  That’s the problem.  Cancer has brought the level of care higher for all long term chronic illnesses.  Yes, the problem is there is no cure.  And an even bigger problem is later detection because of financial reasons.  Raise your hand if you know someone who had/has cancer and it was detected at a later stage because of lack of insurance.    We all know someone, don’t we?  And with all the walks and bracelets that read “BOOBIES”, people are still dying of breast cancer.

Everyone has heard of cancer.

That doesn’t mean we should have to fight each other to get research funds, but we do.  We fight with ads, bracelets, publicity, made for TV movies and fundraisers.  Let’s face it, it’s working.  We have come a long way with cancer research.  And research for cancer has led the way for long term care, hospice care and cosmetic surgery.  Mastectomies and reconstruction is now covered by insurance.  So, if you have insurance, you have a chance.  A fighting chance.

Don’t abandon cancer.  Just add awareness of other conditions.

Scleroderma has been referred to as a “niche disease”.  Not as many people get scleroderma as cancer.  On the surface, that’s true, but there are many different types of cancer.  Scleroderma is an autoimmune disease.  And there are many types of autoimmune diseases.  How many?  Well, that depends on who you ask.  I know of one so-called activist who told me, she has fibromyalgia, but chooses to focus on her lupus because she felt that fibromyalgia wasn’t a “real” disease.  But you know what?  What if that’s just what I thought she said.  What if I just mentioned that to angry up your blood to move you to activism?  Or what if I had a non-profit and I said that to move you to donate?

Is it a mind game, or is it real?

When I first had the symptoms of scleroderma, I was told I was an “Hysterical female”.  And yes, that was real.  Like many patients with a chronic illness with no visible symptoms, I too asked myself: Is this real?

You know what I also wonder?  What if I didn’t have veteran’s benefits?  If the disease didn’t kill me first, I probably would have died in childbirth.    Every day I find a Facebook status about some fighting for their healthcare.  That’s right, fighting for care for their own illness.

Not to mention by the time most are diagnosed with a chronic illness, they have lost their income, and are fighting for benefits they paid into because assholes like Rush Limbaugh insist on calling things like Social Security and Medicare, “entitlement programs”.  Yes, people like me who have worked since age 15, or raised a family and want to live on the government teet, near poverty.   Look, every system has it’s abusers.  There is always a way to cheat the system – any system.  So, let’s make it so people won’t die because they have to choose between medicine and food.  People do it every day.  I am not one of them and I am one of the lucky ones.  That’s because I am a veteran.  If I had been diagnosed with scleroderma before I entered the Navy, I would have been tossed out before boot camp  relying  on Social Security and living with family.  But, you know what, I would have been dead by now.

But Karen, you don’t know you would be dead without veteran’s benefits.

But I do.  I have the luxury of walking into any Veteran’s Hospital ER and getting treated for what I have, because I was given 100% service connected disability rating in 1996.  Not now, while there is a 2 year backlog.  In fact, if I have a grave emergency, I don’t have to go all the way to the nearest veteran’s hospital.  I can go into any emergency room and get the care I need and bill the VA.  Sure, it’s a mess of paperwork, but if I am in grave danger, it’s covered.

My initial onset of symptoms was numbness and tingling in my hands.  I was smoker in my early 20’s, so I would have written it off and cut down, or quit and then just write it off as normal.  Who knows how long I would have waited to receive care.  You know,I have gone on long enough.  My onset of symptoms is for a whole other post.

 

Okay, if you skipped to the end:

Why make scleroderma trend?  Let’s do something that costs NOTHING.  No membership fees, no advertising costs or Facebook ads.  Let’s do what the Kardashians do, and go viral.  Let’s make our voices heard by yelling something most people have never even heard of.  Let’s make our voices heard without scary pictures, frightening phrases or braclets that cost $1.00 plus shipping and handling.  Let’s break all the rules Monday, June 3rd.  If you are at work, you will probably be in front of a computer anyway, or looking to kill some time on your phone.  Let’s do this with corny phrases, pictures of walks or those we love who were lost.  Use dirty jokes.  Someone out there has the creativity to use scleroderma in The Aristocrats, I just know it!  Yes, yes I did just link to a Bob Saget Video.  I hate it when guys say there are going to call you, then don’t.  It’s okay.  I ruin The Aristocrats or piss my pants trying to tell it. (A whole other post)

Scleroderma is not fun.  Awareness is not fun either.  Sure, events around awareness are fun like walks or gatherings, but when I am made acutely aware of scleroderma by a new complication, that is not fun.  Or when I am reminded by my curled hands getting injured, or when someone asks, “What happened to your hand?” I look around the room,  before I realize I have a large bandage on my hand, because I am so “aware”, I forget there is something wrong.

I’ll add more updates before the big day we make scleroderma trend.  Right now, I need you to help me get the message out so we can do this.  Please share information about June 3rd.  Let’s set the trend, all of Us.

For more:

Watch the Bob Saget Video. Watch it to the end.  The eye socket chat is worth it.  Not for the kids!

Want to make a tax deductible donation? Find a non-profit that does patient education and research, or doesn’t charge a membership fee to access information.

Want to do some shopping?  Go to my online store.  None of it is tax deductible.

 

The Power of Us. We’re going to make Scleroderma trend world-wide on Twitter.

Even crazier, we are going to do this without spending a single cent.

OUR OBJECTIVE

Scleroderma will trend on Twitter world-wide, June 3, 2013, not by tweeting the same thing over and over.  We will do it with tweets, retweets and modified tweets.  This is the campaign I am  proposing.  This is not my campaign.   This is OUR campaign.  This is a world-wide campaign.  When I refer to us, I mean we, Planet Earth.

The trend will be #scleroderma, but there are many associated conditions I am asking that we all unite to encourage patients to reach outside the parameters of their diagnosis for information.

For example: Lets say you are diagnosed with Lupus.  You find that you are short of breath and your fingers are getting numb for no reason.  There may be a secondary diagnosis that could lead to effective treatment, but maybe you live in an area and don’t have access to specialists familiar with  associated conditions.  Symptoms are written off as just “part of your Lupus”, but there may be treatment used for other conditions that may help these symptoms.  What I am trying to say is that we need to change treatment of these diseases to follow the route of progression of symptoms, not the parameters that confine us by diagnosis (For God’s same someone please comment and let me know if this makes sense.  I’m working without a net here.  Thanks!)

You’ve read this far, so I’m going to assume that you are in.  If not, allow me to apply the “Peter Griffin Persuasion” :
Come on!  Come On!

Okay, good.  Moving on…

OUR MESSAGE

This campaign will have a consistent message of awareness, education and humor.  Here are suggested ideas:

1.  Facts about scleroderma.

2.  Funny anecdotes of observations by those touched by scleroderma.

3.  Memorial tweets always encouraged.  Share a happy memory of someone you lost to scleroderma.

4.  Pictures from walks or fundraisers.

5.  Retweets and Modified Tweets of facts, information or funny stories.

6.  Be positive.
Avoid posts like: “Scleroderma sucks, it kills people”, or  “Scleroderma is a slow, painful disfiguring death.”  We already know this.  Let’s get the facts out in a positive way.   There is no argument those quotes are true, but by staying positive, we inspire and educate.  Yes, scleroderma is scary, but sceroderma patients are not alone.  Let’s not teach with fear.

7.  Do not tweet to celebrities or anyone in a spam-like manner. (edited 5/4/13)
If you have a celebrity you hope will participate, try a friendly email and ask them.  (You know, If I could get a celebrity to comment on this, that would be awesome.)  Celebrities are people who receive hundreds of tweets a day asking for help with causes.  A friendly email is a more personal way to ask.  An email will put a face on your cause.  And if you receive no response, do not shame the celebrity.  Please.  I know many people will tweet friendly, but I want to just set some guidelines. I have seen some weird stuff on Twitter.

8.  Don’t tweet the same tweet over and over.
Yes, getting Scleroderma to trend worldwide is all about numbers, but the purpose of getting scleroderma to trend is raising awareness and education.  Let’s make every tweet count.  Yes, numbers help, but getting just one person to read our tweet helps educate about scleroderma.  In short: Numbers good.  Education better.

DOING THIS AT NO COST… TO ANYONE

June is Scleroderma Awareness Month.  This Tweeting Event on June 3 is to get everyone in on it.  non-profits need to compete for funds.  It’s not a bad thing, it just is.  Because non-profits can’t always work with other non-profits to share information having this open event benefitting no one organization makes everyone “Free to move about.”

Shall we give it a Name?

Twitter is like a giant sandbox where the whole world is welcome to play.  So, Let’s Play in the Sandbox for Scleroderma.  It doesn’t matter what your diagnosis is.  Breakthroughs in research benefit all chronic illnesses, deadly diseases and ways of caregiving.  After June 4, 2013 if others find this model adaptable to their cause, I hope they will use it.  This is a project does not belong to The Mighty Turtle.  It is for us all because we are in this together, and together we are stronger.

You don’t have to join to participate, but if you wish join the event, here it is on Facebook, or ask to be added to the group Let’s Play! on Twitter.

So, If you skipped to the end:

Tweet any time between 12am,  & 11:59 June 3, 2013 Pacific time.  Tweet as often or as little as you like, something relevant with #scleroderma in it.  Let’s Play in The Sandbox For Scleroderma and get #Scleroderma to trend WORLD WIDE on Twitter.  I will be posting tweets about scleroderma every 10 minutes- maybe faster depending on if I can stay out of “Twitter Jail”.  RT what I tweet or tweet your own story, picture or whatever with the hashtag #scleroderma.  If you don’t tweet you can be a great help by  sharing this on FB before and the day of the event.

Remember:  Do NOT tweet celebrities and keep it positive.  No money will be spent to advertise this event.  Period.  We can do this with the power of us.  Let’s set the trend June 3, 2012.

We can be the difference by wearing a T-shirt during a run or with one tweet. This is The Power of Us. We will never know the true reach of a simple gesture that can mean the world to another.

Feeling Square Peg-ish…

 

 

At 42, I still feel like a square peg. Come on, you remember the show about Carrie before Sex in the City. I’m no Carrie. Actually, I’m more an Amanda because as I have been told by one or more dates that I am too analytical. I disagree. If I was truly analytical, I would have looked up the correct use of “too” in that last sentence. Maybe that’s the wrong use of analytical. Maybe I’m just plain sloppy. What were we talking about? Oh, right, I’m a square peg. I had nachos earlier though, and I feel more round than anything right now.

 

Two girls from the cast of 80's TV show, Square Pegs.
SJP before Sex in the City. I related more to Square Pegs.

 

I was feeling square peg-ish because I read other blogs and had problems relating. I kind of wondered that maybe I’m just a bit bitchy, but then I realized I enjoyed reading the stories of others. No, wait I didn’t enjoy reading: I loved reading about the good, the bad and finding hope – sometimes not find hope, but just being.   We all have different events, but share the same feelings of grief, loss and hope, from different victories and milestones.

 

Maybe what I failed to realize before I started writing this was that these three paragraphs may have taken up five minutes, you, the reader will never get back. Then, I thought if it took a person five minutes to read this, my syntax and grammar must be horrible, but my content is just interesting enough to keep you reading. And that like me, maybe you feel like a square peg too. Maybe we are all square pegs who are not so unique and alone, but because we feel like it, we remain isolated.

 

I think I just confused myself. What were we talking about? Oh, right: Sex in the City.

 

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.

 

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.

 

Why I Choose to Leave Public Nervous Breakdowns to The Kardashians

How do I decide what to share?

3. Will anyone else but me care?  No= Pick new topic

2. Do I have valid research to back information I talk about? No= Pick new topic

1.  Should I post about an ongoing unresolved  crisis?  No= Pick new topic.   Solve crisis privately, post when there is a resolution to crisis. NEVER, EVER televise the nervous breakdown. 

Why?  Why shouldn’t I share my most difficult moment as it’s happening?

Let’s take a trip back in time to a simpler era, 1996.  It was not so simple for me.  I was in denial about my health.  Long story short: I coped by drinking lots of alcohol, smoking and pointing out what I thought were everyone else’s problems.

It was a great way to loose friends and alienate people.  It was also a great way to exacerbate my Raynuad’s phenomenon with my smoking, weaken my immune system which was already being suppressed by methotrexate to keep the scleroderma from progressing.  Is it any wonder I developed MRSA while smoking and drinking alcohol in the early stages of my scleroderma diagnosis?  Not to me.

Now, imagine I had a blog and a video camera in 1996.  I know that self righteous person in denial that I was, would have been video blogging while drunk and smoking. How is THAT helpful to anyone newly diagnosed?  It’s not.  I was in a mental state that required help.  I was in no shape to be offering it.

I can only say this because I was lucky enough not to be diagnosed in an age when social networking and video blogs existed.   I needed something private.  I needed help with my own mental an physical health.

Now, I am in no way discouraging patients who are having a rough time to avoid social networking.  In fact, I encourage patients to seek support online.  My two favorite sites specifically for patients to reach out to one another are; Inspire and my new love, Treatment Diaries.  I want to encourage other patients to use time spent televising the nervous breakdown, to instead use it to solve the crisis.

There are different audiences for watching nervous breakdowns and  the choice to televise one’s own to me is the equivalent of the  judgement to making a sex tape.  Here are but two of the types of audiences I have observed:

1. People watch it in the way they watch a train wreck or the Kardashians:  It’s just so F**&$ up, they can’t look away.
2. Patients looking to justify unhealthy coping skills.  They see a blogger who claims to know a thing or two and appears “sicker than they are” and think that coping with alcohol and smoking is okay.  It’s irresponsible as a blogger who claims to be helpful because the video blogger having the nervous breakdown is planting the seed, “That person smoked and drank- that person is okay, so smoking and alcohol won’t hurt me either.”

Now I know that people have their own minds and many cannot be easily influenced, but at a critical time when someone is seeking information about a potentially fatal condition over time, looking to a blogger drunk and smoking is not helpful.  Allow me to provide an example of someone I knew who died too early because she refused to quit smoking and drinking after her diagnosis of scleroderma.

A family friend was diagnosed with scleroderma.  She was in the early stages.  She began drinking more heavily, and continued to smoke.  Eventually, she developed pneumonia, went into a coma and died.  No one will ever know for sure if she would have lived longer had she not been smoking, but here are some things to ponder:

-Someone with a smoker’s cough might be less likely to visit a doctor before bronchitis becomes  pneumonia.

-Smoking greatly decreases the body’s ability to fight infection.  Alcohol, impairs judgement.  I have been more likely to smoke more when I did drink and smoke.  Anyone else experience this?

That this person was unable to detect an upper respiratory infection,  fight pneumonia and was a heavy drinker and smoker is a correlation, or variables existing at the same time.  That is the relationship, in her case, of scleroderma with drinking and smoking.  As I said earlier, no one will ever know if she would have lived longer.  We only know these conditions existed together.  Had the smoking been eliminated, maybe she would have seen her doctor in the early stages of an upper respiratory infection.  As a person fighting for his/her life, what would you choose or advise a good friend to do?

Televised Meltdowns- on purpose:
Having a meltdown online while smoking and drinking, to me is irresponsible as a blogger that wishes to help others.  It is important for a  blogger who claims to be the example and teach others, to be the example or cautionary tale with a helpful resolution or show the negative effects this type of behavior has.

Now, onto having a nervous breakdown online in a blog post or video without a resolution:

Please, step away from the computer, put down the camera and seek help through a licensed practitioner, family member or friend.  We all have friends online, but they may only be able to help though social media and that may not be enough.  Distance therapy can be done through Skype by licensed practitioners, but you can research their credentials.  It’s helpful to seek support from peers.  It is counterproductive to try to solve your own problems by seeking the help of someone in their own crisis.  We can still learn from them, but again, nothing helps more than a licensed practitioner, trusted friend or family member.

We all have online “friends” but if you are in crisis, ask yourself these questions before looking to them for advice.  Take time to ponder your own answers to these questions.

1.  Have you met this person in “person”?
2.  Are they in crisis?
3.  If so, have they resolved this crisis in a healthy or helpful manner?  (Been there, done that does not qualify as helpful  if “friend” is still “there” without seeking help.)
4.  Does this online “friend” criticize your decision to seek help outside their community?

So, I still have moments of depression and fear of the progression of my disease.  I cope with these issues, find a solution and blog only if helpful to others.  I do not want to be that person where someone watches my video blog and thinks, “For God’s sake, someone put down that camera and help this person.”  I thought that after watching the videos of Anna Nichole Smith after she passed and will now leave online meltdowns that to the Kardashians.  I have a strong support system of friends and relatives who will  help when I need it.  If you are a patient and friends and family are not an option for you, I urge you to please visit Treatment Diaries, and contact a health practitioner to get help.

Thank you for reading.

Resources:

Scleroderma Research Foundation: http://www.srfcure.org

Treatment Diaries: http://www.treatmentdiaries.com

Inspire: http://www.inspire.com

Read about The Open Path Psychotherapy Collective: http://www.huffingtonpost.com/paul-fugelsang/mental-health-care_b_2017486.html 

Here is a link to the fundraiser that will make Open Path established  and  provide mental health services to patients who fall through the cracks.   If you know anyone who may want to contribute, please share.  This is to be a nationwide program and there are only 11 days left in this fundraiser.  http://www.indiegogo.com/oppc

Psychology Today: Find a Therapist.  Ask about sliding scale fees.  http://therapists.psychologytoday.com/rms/

For Veterans: http://www.mentalhealth.va.gov

The day I decided to seek help: Making It Stop By Making It Through