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.

Plants Don't Bark

You know those friends we have that help us move, confide in and think they know us better than anyone? We claim they know where we have "hidden the bodies" or help us tend that graveyard of skeletons in our closets.    They don't know anything compared to our pets.  In my case, it's my dogs.

This is a "shaming picture of my dog, Murphy.
I found this BBQ grill brush in her crate.
Thank goodness there is no site to "shame" dog parents!

My dogs have seen things I would never share with my friends.  They come into the room when I get out of the shower, I don't kick them out of the room if I'm having sex and I don't leave the room if I'm having a private conversation on the phone.  My dogs not only know where I hide the bodies, they know why exactly they need burying.

I am often asked if I still have my dogs. Let's face it, two dogs plus a kid, in a one bedroom apartment isn't exactly ideal, but dogs are not disposable. Just because I have gone from a Mc Mansion in the 'burbs, to an apartment in the city.  They bark when I would rather they be quite.  They need to be feed and walked, and they are not shy about reminding me with a bark if I'm stalling them while I'm involved in a Twitter chat.  Yes, dogs are work, but it's the good kind of work.

Plants come to my home to die, because lets's face it: Plants don't bark.  Last year, my son gave me and his stepmom tomato plants.  Every time I go pick up my son, I smile at the tomato plant thriving in my son's step-mom's yard.  It's a beautiful plant that brings an abundance of tomatoes, while my gift has decomposed and contributed to the growth of the grass in a backyard somewhere in Murrieta.  I'm okay with it, and so is my son.  My son knows I am far from perfect, but he does know I love him and a dead tomato plant has only taught him to deal with disappointment.  (My parent of the year award  must be lost in the mail.)

Murphy, Flapjack, my son and me circa 2004

My dogs get me out of bed in the morning.  It used to be my son, but he is with his dad half the time.  Children also grow up.  Soon he will be a teenager and will be too busy being angry with me to wake me up early and only rely on me as a food source.  But my dogs, they will never reach puberty.  They will nurture my maternal instincts because they can bark.  I was reminded this morning that my dogs keep me going.

I woke up to hear Murphy with her usual growly wine to take her outside.  (Flapjack will be here after September 1st.)  I opened my eyes and immediately noticed I had no air conditioner, my mouth was bone dry and my body just ached, especially my hands.  I did not want to get out of bed, but I could not let Murphy start barking.  (This is why plants die in my home- they can't bark.)  If  I don't have to get out of bed in the morning and I feel awful, I won't.  I think that's why I prefer living alone.

When a human stays with me, they take into consideration that I may not be feeling well, and will take the dogs out for me, to let me get the rest I might need.  It's really nice sometimes, if I do need a break- don't get me wrong.  I will admit, that with scleroderma and sarcoidosis, rest is good, but only sometimes.   I can lay in bed all day and I will not feel better.  If I get up, it takes me less than an hour to shake off the blah to push through pain that comes with living with a chronic illness.  For me, my state of mind can be my biggest motivator or  my biggest obstacle- but that's a whole other post.

Flapjack, after finishing a great book! 

Back to this morning: I threw on a hoodie over my Callahan Auto Parts shirt, pants (this time), shoes and take us out.  As soon as the door closed behind us, I saw the early morning sky and my mood was instantly lifted.  I walked out onto the sidewalk (because dogs aren't allowed on the beach) and I instantly felt better.  (I'm okay with no dogs allowed on the beach.  I like laying in sand that doesn't feel and smell like a giant litter box.)  I walked us to where we could both enjoy a view of the ocean. When we returned to the apartment, I resisted my urge to go back to bed.  Sure, I could have if I wanted to, but I wanted to get outside and see more.  Yes, of course my son motivates me every day, but he's not here every day.  My dogs are no substitution, they are part of our family.   I may look like an overgrown teenager from the 1990's with my t- shirts might read; Callahan Auto Parts, Saturday Night Live Quotes or Caddyshack movie quotes at 6am, but I make them look good.  Especially when  I walk my dogs, for whom I am grateful to every day for getting me up, and moving.

I need to create widgets, until then you may also find me on Facebook & Pinterest

Paraffin and Scleroderma: Comments on an article about scleroderma.

August 13, 2013

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.

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.

Scleroderma Awareness Day

As a patient, I don't need a day to make me aware of scleroderma.  

Today, you will read about patients fighting for their lives and treatment.  I'm going to do something just a little different: I'm going to show you what I can do because of treatment available for scleroderma patients.

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it's not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don't have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn't think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don't give up even when it feels hopeless.  Get treatment for depression.  Exercise.

Scleroderma is going to knock you on your ass.   

It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

A very special thank you to West Coast Krav Maga, and Kevin!

Stomach Acid: Inspiring, Isn't It?

It's 4:20am and I have just spent the last 20 minutes gargling and rinsing after waking up lying flat with a mouth full of stomach acid. You see I fell asleep on a stack of pillows practically sitting up, but gravity had it's way with me last night. It's been happening frequently on my vacation because I forgot to pack my wedge pillow. This time it was so awful, I'm too freaked out to go back to sleep.

I have to admit, I don't follow all the rules of Reflux. I have coffee in the morning. Occasionally I eat onions. Last night, I had Ice cream. I usually do not eat at least 4 hours before going to bed. I was planning on staying up to watch the movie Paul with my brother, but I crashed while I was putting my son to sleep. He's on the tail end of his separation anxiety phase and until he's completely asleep, he's got a death grip on my arm.

He's about to start the school year next week. He's progressively getting better and will soon have no problem falling asleep on his own. I know I'm supposed to just let him cry himself to sleep, but I just can't. To be honest,I have separation anxiety as well. He stays with his dad every other week. I hate joint custody. I feel like I'm cheating or something because he's with his dad 2 weeks out of the month. Shouldn't I be enjoying my free time?

I think the root of the problem is that deep down I feel like I will be making up for time I haven't lost yet. Let's be realistic: I have two progressive diseases. I plan to live another 60 years and although I don't believe in God I can still hear her laughing.

I'm afraid of what I might miss, so that extra 8 hours a day I spend with him while I'm sleeping will somehow make up for it. I also take every opportunity to drop some knowledge on my son. He has a great vocabulary for a 7 year old. I don't give him nick names for private parts when he asks me where babies come from. I tell him the truth about how he came into this world 8 weeks early, but it's a happy story because I got to meet him 8 weeks early. It's amazing how one can learn to spin a story about an event that scared the shit out of my family, into an amazing story of how strong I believe this little boy is.

You see, although my health is an ongoing sometimes soul suckingly depressing fact of my life, I am one of the lucky ones. We all know someday we are going to be gone from this world. Anything can change in a minute. No different that a completely healthy person stepping in front of a bus. But for me and probably many like me we are very aware we are living on borrowed time. Every minute is a gift. I've squandered my share, but to finally get to my point, I use every teaching moment I can with my son. I also forgive myself for giving into his separation anxiety issues at night when he goes to sleep.

This started out as a rant about Reflux, but like any good therapy session, it shined daylight on the underlying issue. Not my son's separation anxiety, but my own. I make any moment I can a teaching moment and just for now, it's okay to indulge myself by listening to him sleep at night. This phase is in it's transition with him. He will be going to bed on his own anytime, but just for now I'm going to take advantage of the extra hours I get with my son, even though he's asleep, because every moment is a gift.