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.


Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.

picture of oils for skin moisturizing in various   containers

Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.

Undiluted essential oils should  only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can  nourish moisture starved skin because it will penetrate, not coat.  Essential oils can appear more expensive, but you need less of the product.  To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.

Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one.  I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin.  Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it.    If you have something that works, don’t go searching for an essential oil.  (If it ain’t broke, don’t fix it.)

Ahhh, Paraffin.  It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…)  was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients.  A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits.  A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath.  When I first started exercising again in 2005, I would take a shower before and after.  Warming up those muscles before warming up, is good for body and mind.

The professional manicurist in me speaks up: 
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.

1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.

2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.

Tips for using a parrafin bath for patients with Raynaud’s:

1. Place hand in plastic paraffin bag, then dip bag into paraffin.

2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)

3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.

4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.

Never, EVER use paraffin wax when you have an open wound or pressure sore.  Yes, even a paper cut.  Don’t make me show you pictures of infected wounds- it’s nasty!

For more information:

Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.

Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma

Raynaud’s Risks and Prevention

The Scleroderma Society

Tips for Living with Scleroderma, by Scleroderma Research Foundation

To help fund research for scleroderma, visit: Bounce to a Cure

FAQ for Raynaud’s by The Raynaud’s Association

Handy Hints for Raynaud’s by Raynaud’s & Scleroderma Association, UK

Visit The Mighty Turtle on Facebook for more scleroderma organizations.

 

My Letter to Congress to Urge Funds for Scleroderma Research

Picture of the White House

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

 

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, 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…

What Would Jesus Really Do?

It’s that time of year when Christians reflect on the sacrifice Jesus made for us all.  Honestly, I think many people focus on the torture & death more than his great works.  Look at the symbol:  A emaciated body nailed to two pieces of wood.  That’s not what Jesus was about.  He was crucified.  It  happened to him.  He spoke out and made things happen.  There is a difference.

And Jesus said, “Screw the rapture. You all stay here and keep fighting over guns and eggs. I’m going to a pool party.”

Jesus was about love.  He was about teaching  that we are in this together and we need to be taking care of each other.  If Jesus came back today and saw everyone fighting over guns, while people died of treatable illnesses; no one would be raptured. Not even you, Kirk Cameron!  (By the way… That crush I had on you- totally over it!)

Every day I surf the internet.  Some days I get lucky in the sea of information and ride the wave of a patient’s successful lung transplant or remission, but usually I just drop in on a wave of obituaries, memorial web sites and fundraisers in someone’s memory.

I participated in a chat between Treatment Diaries and Michele Lonabaugh, of  52 Shades of Blue, and something a participant in the chat said, really hit home with me.

Andrew Lopez, RN said: “…most #oncology#cancer research, funding goes to primary cancers, not Mets.#treatdiarieschat

Which explained a truth to me that I have been pounding my head over for years: “The “meat” of research funding goes to the popular  diseases and the scraps go to the ones not so pretty.

You know what I can’t figure out?  That, with all the popularity of making it cool to use the term “boobies” to raise money, wear bracelets and shirts that say “save the Tatas” with all the cheep chachkie’s in landfills; I can’t figure out why people are still dying from tit cancer.

It’s all money.  There is research done that makes amazing breakthroughs.  I am so frustrated because I get all the Viagra and Remicade I need, while others wait for a pencil pusher from an insurance company to tell someone who could benefit from treatment ,that it’s not “in their formulary”.

And why?  Because we don’t want to be communists.  Because we are to stupid and to profit driven and have it ingrained into our psyche at birth, that socializing something  will lead to the end of capitalism.

I know what you’re thinking, “But Karen, we can’t socialize healthcare.  That would make us communists.”

Yes, the worst possible thing that could happen is we will become communists because we cured some people.  God forbid we take care of the sick.  Oh wait… Isn’t THAT what Jesus would do?

No.  Making medicine and care available to everyone who needs it would not make us communists.  Taking care of the sick would make us more Jesus-ey.

So while you are all hunting for Easter Eggs after church this  Sunday, or worrying about the “potential life” in a perfect stranger’s eggs,  I will be wondering if anyone will ever get Jesus’ message.  At least anyone who can make a difference.  Right now, I see a bunch of people fighting over money.  Not care, not health and certainly not behaving like  one who walks in Jesus’ footsteps.  Forget about the rapture.  We would’t deserve it anyway and  Jesus has better things to do, like go to a pool party.

I am so probably going to copyright hell for this. It’s from Funny or Die.

 

 

Let’s actually cure something.  Let’s have all the money go to research,  dispensing of drugs and treatment.  Ron Burgundy movies have, and will continue to provide us with an abundance  of quotes to put on t-shirts, with plenty to say about guns and boobies.

 

U Tube clip from The Guitar Guy

Things Jesus and friends said.

Yes, It Looks Scary, but it Will Grow Back…

I’ve had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it’s just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud’s, I’ll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don’t have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things… and I don’t feel so bad…

 

If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!

 

 

PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.  

Thanks Scleroderma;-)

So yesterday’s post turned out to be 100 here.  Yeah, I phoned it in, but I am totally using my scleroderma card.  But, just because I whipped out the scleroderma ouchie cared, doesn’t mean I’m going to let it stop me.  I’m way too smart and stubborn for that.

I’m not going to stress it.  See, I had planned a great post that required transcribing an interview, that I have been putting off since August.   Then, my thumb which I use to type with, started planning its own escape.  Seriously, the Raynaud’s just in that thumb was off the chain.  So, I had some crummy voice software and now I’m finally getting something good.  So, my post that I have building hype over is still coming.  I’m just finally accepting that I can write with voice software.  I love to type and I do things that are difficult out of sheer stubbornness, but now, this whole typing with my fingers thing has moved to harmful denial.  My thumb had to start an escape to signal me a clue.  Message received, Thumb.   Message received you short, stubby two knuckled, $#%$#@.

 

Introducing… Turtle-isms!

Welcome to the first edition of Illustrated Turt-isms!

Behind the scenes of a Raynaud’s attack.  Raynaud’s is a symptom of Scleroderma CREST, Diabetes and more.

A raynaud's attack shwing creatures choking blood vessels, then Viagra stepping in to save the day.
Raynaud’s: Defined as an overreaction by the sympathetic nervous system in response to cold. But this is what I think is really going on.

Illustration by Chris Dean of Life Your Way!
Written by Karen Vasquez
A DeanSquez Joint