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.


My Letter to Congress to Urge Funds for Scleroderma Research

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist.

Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc…

To get started now, click HERE

Here is the response I received and a copy of my letter:

Your Letter to the President and Congress

 

Karen, thanks for taking action on behalf of Petition2Congress. Your messages are on the way.

 

An individual copy of your letter will be sent to each official:

 

August 7, 2013

 

Dear President Obama,

Dear Representative Lowenthal,

Dear Senator Boxer,

Dear Senator Feinstein,

I was diagnosed with scleroderma at age 23 by the Veteran’s Hospital in Madison Wisconsin after having symptoms in the Navy. I am still here because I had access to healthcare and treatment I often had to fight a male-centric healthcare system. The VA has improved the treatment  f female veterans exponentially. However, there are many patients who are not getting the proper diagnosis and treatment I was able to receive. This need to change. It starts with research, and we have lots of work to do. You will be hearing more from me at TheMightyTurtle.com & a page I started to introduce the possibility of surviving scleroderma: Unstoppable Me: https://www.facebook.com/pages/Unstoppable-Me-Karen-Vasquez/217918321693555

 

Loma Linda VA is overcrowded, like many VA’s across the country. I recently relocated to be closer to a VA that could help me manage my care in Long Beach, California. Not every patient has the luxury to be able to move where there is not only a great medical facility, but family and friends nearby.

 

One thing I have learned and has been found in research, is that many diseases have similar symptoms and research of other diseases has led to effective treatment of different diseases. For example, I also have sarcoidosis. I was diagnosed in 2007 after fighting doctors to do further tests to determine my symptoms were not just scleroderma. After my diagnosis of sarcoidosis, I was prescribed Remicade, normally a treatment for rheumatoid arthritis. My symptoms are now under control and I appear to be in remission with medication. I also take viagra 4 times a day, which was originally designed for infants with pulmonary arterial hypertension. I was the very first female at the Loma Linda VA to be dispensed Viagra. Getting Viagra did not come without a fight and months of waiting. Many patients do not have time to wait for approval and are dying as a result.

 

I urge you help. People are dying simply because they lack money and resources.

 

Thank you,

 

Karen Vasquez

 

And now, the formatted letter:

 

Congress, please support this Petition by directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma, development and evaluation of new treatments, research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome. Establishment of family and “childhood-onset” patient registries. Support for the training of new investigators. Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.

 

This Petition is very important to patients and family members living with Scleroderma. Thank you in advance for your consideration of this Petition.

 

Sincerely,

 

Ms. Karen Vasquez

Long Beach, Ca

 

You can still also have your letters printed and hand-delivered to each official for just $3 each.

 

Thanks again for taking action, and keep this email for your records.

 

Also, be sure to visit http://www.petition2congress.com/ for more important action items.

 

 

 

Help Spread the Call-to-Action: Tweet This

 

Bounce to a Cure for Scleroderma

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…

Scleroderma Is Not ‘Just A Skin Condition’

 

I recently spoke with a customer service representative at the Social Security Office.  She is tasked with asking questions, and making recommendations for the person seeking help.  So, I did a little research.

Today, I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As a patient with scleroderma for 20 years, and diagnosed with sarcoidosis after years of symptoms, these steps sound very nice, but are a bit unrealistic.  Don’t get me wrong, these are great ideas in a perfect world, but the world of healthcare in the United States is far from perfect.  So, I’m going to comment on each step.  Please Note:  This is entirely opinion based on my experience.  If you find my comments useful to keep going, and not be deterred, awesome.  If you would like to tell me to go to hell, awesome.  Let me have it in the comments section.  I make some comments in this post that may incite retaliation.  I’m okay with that.

If you have healthcare where you are never denied a test or medication, this is the perfect plan.  The following steps are verbatim from The Agency for Healthcare Research and Quality.  My comments are in italics.  

Step 1: Take the time you need. Do not rush important decisions about your health. In most cases, you will have time to carefully examine your options and decide what is best for you.
– In 1994, there were very few treatment options for scleroderma.  I was given a leaflet and a nifedipine prescription and sent on my way.  My choice was to quit nursing school based on no information, move back to California from Wisconsin and get lots of rest, or stick with nursing school with no idea what to expect.  It took two years to get diagnosed with scleroderma.   Luckily, I was in the Navy for one year and half of that time.  I did not miss a paycheck because I needed to stay home sick or go to a doctor.  How would that work for someone else with no job, because they called in sick so many times while trying to get diagnosed with weird symptoms like blue hands, swelling and nerve pain.  Sure, my diagnosis was 20 years ago, a lot has changed because of research, but people in remote areas are having trouble getting the right diagnosis and care.  Just do a google search of scleroderma blogs and you will read how patients are trying to get a diagnosis or care, or getting denied disability benefits because they do not have the proper diagnosis yet, because their doctor is unfamiliar with scleroderma and thinks it’s ‘just a skin disease’.  In a recent conversation with a representative of Social Security researching adaptations for patients with scleroderma, she asked, “Why would someone with scleroderma need adaptations?  It’s a skin condition.”  I explained to her that scleroderma was not.  She was very receptive to the information I provided her, but she is one of many, who are trained to speak with people in need of life saving benefits and she thought Scleroderma was a skin condition.  We have lots of work to do! 

Step 2: Get the support you need. Look for support from family and friends, people who are going through the same thing you are, and those who have “been there.” They can help you cope with your situation and make informed decisions.

Lovely.  In a perfect word where family and friends understand that a chronic illness cannot be seen, this is a great idea.  The truth is, many patients suffer for years before diagnosis, because they feel crazy telling people they trust their symptoms and they are met with responses we have all seen in memes all over the internet.  Oh, where to begin!  Here are a few:
1.  You don’t look sick.  Check out The Spoon Theory by Christine Miserandino. It’s a great post about “Not looking sick”
2.  It’s all in your head.
3.  You need to exercise more.
4.  Then, there is the gossip some experience:  She’s a hypochondriac.
5.  Scleroderma sounds like a skin condition.  It’s in the name, so it must not be serious.
Okay, enough of that, you get my point.  First, we have to explain what scleroderma is to our family, while we try to grasp what it is, without panicking during every search on Google because people post wort-case to get attention for awareness.  I can’t blame them for trying, but it leaves little hope to newly diagnosed patients.  More and more patients are surviving scleroderma, but only those who have access to the best healthcare and educated providers.  

Step 3: Talk with your doctor. Good communication with your doctor can help you feel more satisfied with the care you receive. Research shows it can even have a positive effect on things such as symptoms and pain. Getting a “second opinion” may help you feel more confident about your care.

Speaking of doctors… When I moved to Murrieta, doctors here had only heard of scleroderma.  They mistook my syptoms of sarcoidosis for scleroderma symptoms because they knew nothing about sarcoidosis or scleroderma.  First, a patient has to find a doctor willing to do more than give the diagnosis and “wait and see”.  Make sure you are seeing the right specialist, a rheumatologist.  Not to mention getting baseline tests of lungs, heart and upper GI.  Now, if you are newly diagnosed, have a full time job and have “Golden Insurance”, this is not a problem.  I have a request: If you have an experience to share, share it in comments to encourage other patients not to give up.  This is a journey riddled with roadblocks by people paid to keep cost down.  We have to become our own best advocate.  And by we, I mean you who are reading it who are frustrated.  I have to drive 2 hours one way to get the proper treatment for my hands.  It sucks, but it is what it is.  I bring my dog and stop at the beach after.  I do it because since 1999, OTs at two nearby Veteran’s Hospitals would not work on my hands.  I was told I was a lost cause.  Since stopping the OT I received through the Wisconsin Veteran’s Healthcare System, my hands have since atrophied and now we are working to get some range back.  

Step 4: Seek out information. When learning about your health problem and its treatment, look for information that is based on a careful review of the latest scientific findings published in medical journals.

Visit at a hospital, or medical school library and ask the librarian for help.  Medical journals often post only abstracts of a study online, which is a short blurb about findings.  Google it without experience and it’s the perfect way to diagnose yourself into thinking you are dying.  Before you research, ask your doctor for the proper keywords and journal names.  I don’t want to deter you, I want to encourage you to find research foundations that research your specific condition.  For Scleroderma in the United States, I recommend The Scleroderma Research Foundation.   Their funds go directly to research and education.  They have one office.  As far as fundraising goes, they are nationwide.  The Scleroderma Foundation is a great place to go for support groups, education and research as well.  They have chapters all over the United States with many offices around the country.    Many are all volunteer, some have paid staff amd some are simply support groups.  They provide great services, and funds are raised for each region.  

Watch your back, Jack.  There are some online patient communities that offer counseling services without licensed counselors or ask you to donate to participate.  I am sure they do some good, but they claim to offer counseling services by unlicensed counselors.  I once worked with a former mentor (emphasis on the word former) placed plants in her closed groups in the early days.  And I have noticed there is a bot that initiates contact with people who tweet certain diseases, on behalf of my former mentor’s newly formed foundation.  But, don’t take my word for it- or anyone else’s for that matter.    If you find yourself in a group and it doesn’t feel right, go with your instincts.    If you see a group going after an individual or shuns members, that is a huge red flag. 

Step 5: Decide on a treatment plan. Work with your doctor to decide on a treatment plan that best meets your needs.

Great idea.  A treatment plan is an awesome idea!   Now the trick is to find a doctor who knows more than a thing or two about scleroderma, or your condition in your area.  You may have to travel, but it is worth it.  This is a chronic illness and your life depends on how well your care is managed.  I know scleroderma, so I will refer the two organizations I trust to help patients without requiring a donation or membership.  These organizations count on donations from people other than patients. If you pick up the phone and call these foundations, they will give you information over the phone for free.  
1.  The Scleroderma Research Foundation Contact Info and Downloads for newly  & not so newly diagnosed patients
2.  The Scleroderma Foundation  Contact info and Downloads for newly & not so newly diagnosed patients.   

Patient Communities:
Very helpful.  I recommend the following:
1.  Treatment Diaries   
Outstanding community founded by cancer survivor, Amy Ohm.  They will not ask you for money to join, and it’s a great way to connect with fellow patients.
2.  Inspire:  Another great online patient community that will not ask you for money to join.  

So, those are my comments about those 5 steps based on 20 years with scleroderma.  Many autoimmune diseases have similar symptoms to fibromyalgia, lupus, rheumatoid arthritis and drugs used to suppress the immune system for cancer treatment, like methotrexate are often used in the early stages of scleroderma.

I would like to add that If you are newly diagnosed or seeking better care because what you are doing, don’t be afraid to look at how people with other diagnoses are coping.  We share the same experiences like loss, grief, anger depression and so much more.  My diagnosis of sarcoidosis was accidental.  I went to 4 different ER’s before UCLA took my trouble breathing seriously and and did the tests  that lead to a lung and lymph node biopsy that provided the sarcoidosis diagnosis.  Until I was given Remicade because of the sarcoidosis, my symptoms were progressing of both the scleroderma & sarcoidosis.  I had to fight for the recommended Remicade and bypass 3 other medications that needed to try and fail before using remicade because of cost.  Since 2007 and receiving Remicade with Methotrexate, the pulmonary fibrosis in my lungs has stopped progressing.  Fighting for care sucks, but it’s exactly what we have to do to get what we need when someone says “no” due to cost.  If you take anything away from this post, I urge you to keep fighting.  It’s hard.   I;m not going to lie, there were times I wished for death. I would tell myself, “I wish this was over.”  Until I realized my scleroderma was not going away and over, meant death.  I made it through the worst of it.  I think it is luck I am not dead because many die from scleroderma every day.  I’m here because it was not my time.  I continue to heal and become stronger because I am my own best advocate.  There are times I put my foot in my mouth and make mistakes.

If you skipped to the end:

Advocating for yourself is on the job training, even with help.  And there is no shortage of people looking for minions for financial gain or to fulfill some messianic fantasy.  So, watch your back, Jack.  Rest between battles, because you won’t win every single one.  Somedays, your only goal needs to be to live to fight another day.  Most important, the best possible outcome may not be what you want.  It may take compromises, like giving up certain foods and activities and worst of all (at least for me) asking for help.  If you have to give things up because you can no longer do them, take time to grieve, but try not to let it consume you and it times, it might but you can crawl out of the jaws of what’s consuming you.   There are no guarantees in life, but there is hope if you look for it.    Keep looking for hope.  We all have limited time here, cherish what you get.  I never said this would be easy.  I still struggle at times, I take antidepressants, I see a psychiatrist to manage my meds for anxiety and have a checklist of depression red flags for me.   Exercise and writing are my outlets.  My happy place is time with my son.  My dogs get me out of bed every morning.  Find you tools, then fight.

 

Scleroderma Awareness Month is Over…

 

 

As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn’t Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list for Santa, the Great Pumpkin or “NAME HERE”. Because even if there is no Santa, the Great Pumpkin or “NAME HERE”, there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes.  Right now there are researchers working on a cure to fulfill at least one of my wishes.  And there are doctors trying to fulfill the wishes of patients around the world.   Yes, I am equating researchers and those helping them to Santa’s Elves.  They do they work they do because someone, somewhere said, “I wish I could help.”

So, how about the Scleroderma Giraffe?  Yes, my “NAME HERE”,  being will be to the Scleroderma Giraffe.  And instead of elves, the Scleroderma Giraffe has gnomes.  (What?  You don’t like the Scleroderma Giraffe?  Write your own damn blog.)

Dear Scleroderma Giraffe,

First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out.   That is really cool.

I have a lot to ask, so I’ve narrowed it down to two.

1.  You know I’m going to ask for a cure.  (I had to ask.)  Click here for the Peter Griffin Argument. 

2.  Okay, how about some more of those breakthroughs in research?  Thanks for the break throughs so far, and I look forward to celebrating more.

Well, I think that covers it for now.  I could  go on for days with requests, but I would really like it if you paid less attention to what I’m writing and get back to helping the gnomes with research.  I know you are able to read faster  because of your giraffe magic, but there are lots of patients who can’t wait one extra minute.

Sincerely,

Karen

Getting Scleroderma to Trend on Twitter is Not Just About Scleroderma

I am honored that The Pulmonary Hypertention Association has posted what I wrote about this monday’s upcoming Twitter Event: To get #scleroderma to trend world-wide.  There are many overlapping and associated conditions.

Please visit their Associated Condition Patient Blog! 

 

 

I know that you already knew this about me. This also describes you!

 

Chasing Dragons

Trying to keep up with each organ system effected by the progression of scleroderma is like chasing dragons.  I don’t know what to look for, so the dragons taunt me with a hint here, and a clue there.

I have pulmonary fibrosis.  It can exist alone or be part of an associated condition.  Pulmonary fibrosis is an associated condition of scleroderma for me. Parts of my lungs have scarred and become fibrotic.  Funny thing about that is the strain of my lungs working harder can also put a strain on my heart.  Or I could have pulmonary hypertension.

I know there may be friends and family recoiling in horror while reading this, (If this a surprise, I truly am sorry.  And if you are that far behind you really should follow my turtle page on Facebook.  Keeping up with this is exhausting.  I’ve had this diagnosis for a long time.  We all know where this is going in about 50 years.  I just might need a lung transplant on the way.  Again, if this is a surprise, we really need to connect on FB.)

I’m the protagonist in a dark comedy.  (Which could be a result of an over inflated opinion of myself, but that’s a whole other post.) Of all the medical names for things I have had bounced off of me, my internal voice sounds like Amy Poehler in a round of “Really?” with Seth Meyers.  The most exhausting thing about all of this, is having to fight for tests to get ahead of the mayhem of scleroderma and its associated conditions.

 

I Move Like Jagger, I Just Don’t Look As Cool

Mick Jagger’s is 69 and he can move around on stage like he does, because he stays in shape.  When I’m 69, I plan to move that way. Without all that head moving and hands-on-the-hips thing.  I’m cool, but not Mick Jagger-cool.  I said I can move like Jagger, I don’t have the moves like Jagger. 

If I stay in shape, I have a better chance of a favorable outcome when the disease progresses.

Wench!  Bring Me More Viagra! 

I am taking Viagra four times a day to keep blood flow to my fingers and toes, as well as normalizing the pressure in my lungs.  I know this, because if I skip a dose of Viagra, I know it.   I stay as active as possible.  I take long walks, go hiking and do martial arts.  If I don’t get some cardio, I feel it the next day.  In my head (And by in my head, I mean it’s what I think, but it’s probably not true.)  So, In my head, I believe I am somehow staying ahead of the progression, somehow breaking up the fibrosis with my magic exercise.  Abra-freakin-cadabra.  During my exercise I have no distress, except the occasional fall in Krav Maga (Israeli Martial Arts) which all students experience.

The Viagra makes it so I can do these things without causing damage.  Which is fine.  I’m okay with that, but like all treatments, they are no cure.  Eventually, I’m going to need more Viagra or a whole new drug.  But while I’m on Viagra, we should get to know my heart.  Because when lungs have difficulty that gets progressively worse, the heart can be damaged.

So Let’s Get a Baseline
Sounds so simple, doesn’t it?  We know enough about scleroderma and related conditions like pulmonary fibrosis, an echocardiogram  (1)”…estimate  PASP (Pulmonary Artery Systolic Pressure) in patients with advanced lung disease such as interstitial lung disease and chronic obstructive lung disease can be difficult to obtain”

Okay, so since we have pulmonary fibrosis with scleroderma and tricuspid regurgitation (That is asymptomatic for me.) there is more than one study that calls for a right heart catherization.  (It’s just a test, don’t freak out.)

So, as I mentioned earlier, getting a baseline seems simple.  We want one so that we know if a condition is progressing.  Let’s see what my normal is so that when “shit gets real”, we can quantify changes and treat effectively.  

Apparently, there are doctors, who believe that a baseline is not necessary, without a diagnosis of pulmonary hypertension.

It could be called a challenge.  I call it a day that ends in “Y”.
Challenges for tests are nothing new to me.  When this happens, someone is lacking information.  When this happens, it becomes my responsibility to get the practitioner the information.  I made a case to rheumatology, they concur and some department head will have a come to Jesus moment.  It’s all good.
When I’m told “no”, I find a way to get to yes.  And I have never even read that book.  I switch to sales mode.   What can I do do to get you in to this car, today? 

What’s with the dragons?
Today was just one of those days. This was the third follow up appointment about a right heart cath, because the Chief of Rheumatology had been out of the country. We needed some seniority to get this heart cath done.  I felt like I was chasing something during my appointment, then I thought:  hey, why not make it a dragon?  Then once we were all in agreement that my test would take place, I felt like I was ready to ride.  Because that’s really all this is.  You get the diagnostic tools, the results will dictate the next move.  The test is coming.  I’ve caught the dragon.  Why not go for a ride?  It will be bumpy and scary, but it’s just a dragon.   Maybe I should have used an airplane metaphor, because on planes they serve drinks, and on a metaphoric plane, I can drink.  Dragons sounded really good on my drive home from the VA Hospital today.  I’m too tired to redo this.

If You Skipped to the End:
When a doctor tells me a test I need can’t be done because the chief of that department where the test is needed from doesn’t want to play, that chief just needs more information.  I could get mad and pitch a fit, but I have found anger a waste of time.

If you find yourself fighting for tests, please don’t give up, keep fighting.  I know it sucks.  It won’t get easier, but eventually, you will get used to it.  Of course it sucks.  But life is what you make it and complaining without action will get you no where. You wil find ourself walking information to doctors.   There are a lot of crazy diseases no one has heard of, so it;s our job as our own best advocate to get info where needed.   Don’t hate the playa, hate the game.  Then, get to work.  

Get More Information

Join me with Treatment Diaries Tuesday, May 7, for a Tweet Chat!  Watch for announcement on Facebook.

(1) The Role of Echocardiography in the Diagnosis and Assessment of Pulmonary Hypertension

Right Heart Catherizaton, Johns Hopkins Medicine.

Scleroderma Research Foundation

The Scleroderma Foundation

Scleroderma Care Foundation

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

 

 

Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…

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.