Sunday, September 29, 2013

For Roberta and her Family.

Update 9/30/13

Team Roberta Krause Smith, now walks in memory of Roberta.  My, how time has flown.  A follow up post will follow. For now, please show your support for Roberta's family.  She was taken too soon by cancer.  Why haven't we cured this yet?  Follow the links at the bottom to donate to the 2013 team who walked in Roberta's memory for those still fighting.

Originally posted 9/2/10.

In 1994, I moved to La Crosse, Wisconsin from Southern California. Being a California native, let's just say I'm lucky I didn't die of hypothermia. I survived Wisconsin and fell in love with it thanks to the Krause Family. Roger and Luanne, their children Christie, Leora, Roberta and Carl. I met Carl while I was in the Navy and I moved to Wisconsin with him so we could both attend nursing school at Viterbo College (now University). The Krause Family of West Salem made me feel welcome, even at my bitchiest. I was no picnic to live with. We started out at Roger and Luanne’s and eventually, Roberta, who lived alone at the time, was nice enough to let me be her roommate. Again, I was no picnic. I was newly diagnosed with Scleroderma, in a lot of pain and very hard to live with, yet Roberta still made me feel welcome. We folded laundry on her couch and she taught me how to make a great seafood Alfredo my son absolutely loves. The Krause Family continued to invite me over to holidays and make me feel welcome, even after Carl and I broke up. They made me feel like I had a family 2000 miles from home. (On a side note, Carl’s a great guy, but when you have two Scorpios together, it's the equivalent combining gasoline and a blowtorch- that and I was such a bitch!) I'm very grateful to all of them. They showed me just how great Wisconsin is. They taught me golf, football, introduced me lutefisk, how yummy hotdish is and about how important it is to wave to my neighbors. I will never forget their hospitality and I'm very grateful for getting the opportunity to know them. I'm very grateful to their son, Carl for telling me about La Crosse and sharing his family with me.

I haven't seen the Krause Family since 1999 after I moved back to California. I recently found Leora and Roberta on Facebook and have kept in touch with them through wall postings and picture sharing. They have also been very generous contributors to the Scleroderma Foundation and have sponsored me and my son on our walks since we have regained contact.

In 2008, Roberta and her mom Luanne were both diagnosed with breast cancer. Luanne is done with her treatment and doing well. Roberta has not been so lucky. The cancer has metastasized and moved into her bones, called Metastatic Breast Cancer. This is often not diagnosed until stage IV. Metastatic cancer is often considered incurable, but there are many survivors.

Roberta has the support of her family and friends but she is in the fight of her life. This blog isn't just about Scleroderma and Sarcoidosis, it's about being human. All diseases are bad. If one disease comes closer to a cure or treatment, the research and information has a ripple effect that will help the research of others. No matter how small, progress is progress.

Everyone knows someone who has been touched by cancer. Help Roberta and her team exceed their goal of $300.00. Sponsor Roberta for the Steppin' Out in Pink Walk, Saturday, September 11. Pitch in what you can. Every donation makes a difference. If 20 people donate $5.00 each, that’s $100.00. Every dollar counts.

Thank you for taking the time to read about a family who really made a difference in my life. Thank you in advance for making a generous donation to fund research, patient support, effective treatment and one day a cure for one more horrible disease.

Team Roberta Krause Smith Donation Page
More about Metastatic Breast Cancer
A Survivor's Story
METS Matters Blog
Gunderson Lutheran Medical Foundation
Join Steppin Out In Pink on Face Book
Speak to a Survivor: 1-866-891-2392

Thursday, September 26, 2013

The Michael J Fox Show Is More Than "Just a sitcom" to Me.

I am so excited about Michael J Fox returning to television.  He has a progressive illness (putting mildly), and has found a way to move forward, and giving this a try.  As someone who is asked why I want to work after all that I have been through, and all that may happen, this is more than just a sitcom.

I am thrilled, inspired and stoked about Think/Able  I've been doing it for years and people now get to see it as a possibility.  Because hey, nothing really happens unless it's on the TV machine.  Everyone's experience is different, and not everyone with a chronic illness recovers to be well enough to go back to work.  But I love that this series plants a seed that patients with chronic illness don't have to crawl into bed and stay there.  That if patients are able to survive the worst or manage their symptoms, that life can begin again.  Of course, it may not be what we had planned.

Two Saturdays ago as I enjoyed an afternoon of training for a new career path.   I was a bit in awe for two reasons.

1.  At age 30,  I could not imagine I would still be here at age 42.    I thought for sure scleroderma was going to rob me of the amazing life I have had since 2001.  Scleroderma added giant obstacles, but I'm still here.

2.  There I was taking on a new career quite seriously.  It's not the nursing career I imagined in my 20's and I didn't care.  I felt like I was in the right place.  I can manage this schedule and I have faith I will achieve my goals.

The Michael J. Fox show is fictional.  I don't have Parkinson's.  But people with Parkinson's, Scleroderma, Sarcoidosis, Lupus, Diabetes and too many things to list here, have shared experiences like loss, grief, victories, successes and weird-ass medical experiences.  I am excited for Michael J. Fox the human, who is working with what he has, and stepping out there to do what he loves.  He gets to go back to work making people laugh.  I am going back to work to play with make up and people.  When I was a teenager, I did want to be a make-up artist.  So yes, I get to do what I love as well.  I'm back at the beginning.  I'm no spring chicken, but I have the heart and drive of an 18 year old.

So, what can you do?  Check out The Michael J. Fox Foundation on Facebook, or anywhere on the web.  Tune into the show tonight, but don't spoil it for me.  I have to miss the premiere because I may not make it back in time from Krav Maga with my son.  Watch the show.  It's fictional, but behind fiction and humor is some truth.  And as the foundation put so well into words, Think/Able.  Learn about it, and be inspired.

What?  You don't have Parkinson's?  Hey, we are in this together.  Progress in one disease helps research of all diseases.  So check out The Michael J. Fox Foundation

To learn more about scleroderma, start here with the Scleroderma Research Foundation, but they are not the only "church" in town, but they are the best place to start.  

To donate to help find a cure for scleroderma, check out Bounce to a Cure  and make a tax deductible donation for research and patient education.  

And if you feel like doing some shopping and would like to show support for this blog, check out my online store, here.   (that was a shameless plug btw...)

Tuesday, September 3, 2013

A Look At Recommended Steps to Take After Diagnosis

Posted July 10, 2013, edited September 3, 2013

I recently  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 were unrealistic, at least in my case.  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.  We only have to agree that scleroderma and sarcoidosis need to be cured.
Read the this aloud to yourself as a reminder.

If you have healthcare and 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, 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 me 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?  I was in the military and guaranteed a paycheck.  What about someone who lost their 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.  You would be surprised what little information people making decisions or giving advice have about scleroderma.  

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, "Just a skin condition."  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 symptoms 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.  

My comments about those 5 steps are based on my 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 your tools, then fight.

Monday, September 2, 2013

Before We Go Into Syria, We Need To Make Sure We Have Service Members' and Veterans' Support in Place.

I am watching CNN live-streaming right now.  John Mc Cain and Lindsey Graham are having a joint press conference about Syria.  I hear them saying they want something bigger than a limited strike.  That, "We didn't act fast enough and now we need something bigger."

CNN said the message is how it will be "catastrophic" if Congress rejects a strike.

You know what I consider catastrophic?  That we are yet again on the eve of attacking another county and veterans are still waiting for services.

 I have been a patient in the Veteran's Healthcare system since 1994.  I was in the Red Sea off the coast of Saudi Arabia doing drills and preparation with thousands of others sitting on ships in the water in 1991, while families sat at home and worried.  It's 2013, and here we are again.  "They" are saying there will be no "boots on the ground".  That may be true, but what about those waiting aboard ships, on military bases overseas standing by with their chemical warfare gear at the ready in case they get hit by chemical weapons.  Syria gassed it's own people.  Gassing our military is a possible risk we need to be prepared for, here at home in our military and veteran's hospitals.

Look, I know that this is a huge unknown.  I would not want to be in President Obama's shoes right now making these decisions, or any member of congress.  But I would like to ask those who are making decisions to launch anything, PLEASE have programs in place for future veterans to get them in the VA Healthcare system BEFORE they get cancer, unexplainable respiratory disorders, caregiver support, family support and compensation.

While I listened to my neighbors in 2003 cheer for a war in Iraq and saying things like, "Iraqi oil will pay for this war." Or, "it will last six months", as I saw kids young enough to be my offspring visit my VA hospital missing limbs returning from Iraq, not one of my neighbors shouting for that war seemed to care what happened to our  service members while it was happening.  Except of course the families of those who were in harm's way coming home in boxes and missing limbs.  It took non-profits like IAVA and Wounded Warrior Project to get people not directly effected to care about the real cost of war.  And don't hand me that line they were fighting for our freedom.  Freedom to what?  Vacation in Iraq?  Have you been to the middle east?  Many Americans couldn't find Iraq on a map in 2003.  Our troops over there were not fighting for our freedom.  They may have left believing they were, but ask anyone who has seen combat in Iraq and Afghanistan, and they will tell you they were fighting to protect their brothers and sisters they were serving with.  Those in combat fought to protect one another from harm, and when they returned they were given forms to fill out and told to wait.  Care has improved at the VA, but many are still waiting for benefits.  Many died before they were able to get help because they committed suicide.  Every 65 minutes, a veteran or service member commits suicide. (Forbes and Department of Veteran's Affairs report.)

We did not prepare for the fight at home before the fight abroad.  

Watch this clip of Jon Stewart explaining this mess in March of 2013.  

So, we have a backlogged Veteran's Healthcare system because we did not plan for our returning veterans BEFORE we attacked anyone last time.  Okay, pretty much every time we have ever attacked anyone.  So this time, let's learn from the mistakes of our past and  GET IT TOGETHER PEOPLE.

You want to show Assad he can't get away with genocide?   Fine.  Before we "bring it" to Assad, you had better make it easier for those who return home and their families.  Because if we don't take care of our own, we have no business attacking anyone else because they harmed their own people.  This is not a partisan matter.  This is a human being matter.