Confessions of a Recovered Minion

 

I’m not sure if staying silent was taking the high road while events unfolded before my eyes during the time, but in retrospect, it was the right thing to do.  Not replying to things that appeared  to elicit  a response and just focusing on what needs to be done and removing myself from the equation was just the right thing to do.  The truth is, I will never know if what was said was to elicit a response or make me look bad.  Maybe it had nothing to do with me.  Maybe it was all in my head.  Wait, no it wasn’t, but that’s what I was told.

I know this because I had an experience where I was taken advantage of, blamed and I stayed quiet.  I spoke to only one person about resolving it.  The one person who could resolve it and make sure what happened to me, did not happen to another patient.

It was hard to stay quiet, and face some real truths about myself.  I am a recovered minion.  I no longer drink the “kool-aid”.   Despite all that went on, I am grateful for the learning experience.

What matters is what I learned.  I learned about who I really am, and what my goals are.  I learned that when someone tells me I shouldn’t be who I am, I may not be a threat, but they may consider me one.  It was painful to remove myself from the equation, but I am grateful for the experience because I now know there are people who will take my trust and use it for their own personal financial gain.  They will talk to me as if I am stupid and have no idea I can see through their  lies.  I learned that the criticism of questioning instead of answering my question, is a red flag.    I learned I never want to be that kind of person as a minion, and I learned how to recognize a minion gatherer.

I will never forget that no matter how hard someone works to hide their real intentions, it will come out eventually.  I learned that if I watch and observe they cannot hide exactly who they are.  And my education was tough, but priceless,  and I am grateful for it.

Why I Choose to Leave Public Nervous Breakdowns to The Kardashians

How do I decide what to share?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for reading.

Resources:

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

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

Inspire: http://www.inspire.com

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

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

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

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

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

 

 

 

 

So… What Did The Doctor Say?

I have had many conversations with many doctors about my prognosis and treatment.  There are times these conversations are redundant.  Not in a bad way, it’s because there are times when there are no changes in my symptoms or blood work, which in my case has usually been a good thing.  Why?  Well, it means things are not getting worse at that time.

Because I see my specialists four times a year, it means I have many appointments.   How many specialists do I have?  Well, there’s rhematology, pulmonology,  gastroentorology dermatology, podiatry, occupational therapy and psychology- you now to help me manage  dealing with all my specialists.   Then, there are appointments for tests that these specailists need, to keep up with what my body is doing; pulmonary functions test, twice a year; echo cardiogram once a year; and my personal favorite, an upper endoscopy.  That’s where a doctor sticks a camera down my throat.  I say that because I usually wake up feeling very happy.  The sedatives they use on that test get me a little silly and if I have to have crazy tests, I might as well enjoy a buzz every now and then.  Okay, aside from my chronic illness monitoring, there are my regular yearly visits to a primary care physician for regular check-ups, then my OBGYN for my lady-parts.  Long story short, I spend a lot of time with doctors, nurses and healthcare providers.

It’s not all that bad.  Once, I had a gaggle of test results from the VA Hospital to share wth my doctor at UCLA.  I requested and received a disc with those tests, brought my laptop and some snacks to UCLA and spent an hour reviewing the tests with my Rhuematologists.  I learned a lot about what the tests meant to my health and my doctor was able to enjoy a snack.  (Seriously, if you can, feed your doctor they do back to back appointments all day.  It wouldn’t kill you to throw them a snack every now and then.  Sometimes, I just grab a candy bar on my way in.  But only for your favorite docs.  You don’t have to be slutty about it.)

What were we talking about?  Oh yeah talking with our doctors.  For me, talking with my doctors is easy.  If I don’t understand, I ask questions.  I have had some weird appointments, but after 2o years of this, they all kind of run together and I just remember ones I learn from.  The tough part for me, is repeating what I have learned to my family.

And now, we can get to my favorite question, “So… What did the doctor say?”   It feels like a trick question.  When asked, I’m not sure what people mean.  Do they want to know my blood work numbers?  Do they want to know every word that was said?  Which doctor?

Yeah, my attitude can be considered somewhat crabby and I wouldn’t be offended if it was thought of as downright bitchy, but I can never give the right answer.  The people who ask me that question, love me very much and they want to hear good news.  Often, I have nothing new to say from the last appointment.  Sometimes I learn something so exciting, I use latin based words.  Once  an ex-boyfriend replied, “Stop trying to sound like a doctor.  You are not that smart.”  (Hence the title, “ex”.)  Seriously, dating has given me so much material, not about men, but about ignorance, sheer stupidity and downright douche-baggery (thats ignorance with malice), but I digress.

Back to my point:  It used to be disappointing to not be able to relay to loved ones that things were not getting better.  They were either stable or going in an unknown direction.   So many times,  the result of my appointments are, “Okay, we know something, let’s see where this something goes.”  If I had to hear that about my kid all the time, I’m not sure how I would take it.  I believe that if you truly want to torture a person, hurt their child.  That’s what chronic illness does to parents of children with a chronic illness- no matter the age of those  children.

Because I plan to live at least another fifty years, I had to find a way to make reports about my doctor visits not so uneventful, less uneventful when reporting to family.    Everyone needs encouragement, but I didn’t want to do it by providing false hope either, but I accidentally found a way.

I’m not sure when I had this conversation with my mom.  I do know it was before my sarcoidosis diagnosis.  It went something like this:

Mom, “So…. What did the doctor say?”

There had been no change in anything, so this just sprang from my mouth, “Mom, the doctor said I have scleroderma.”

There was a pause, then my mom started laughing.  I was so relived.  I found a way to make my mom laugh.  Watching my parents worry and wait is not easy, but I have it easy compared to their worry about my health.  Making my mom laugh made me feel good.  I used the same response on my dad and he laughed.

It wasn’t just making lemonade, it was taking lemons and squeezing  lemon juice back at Life’s eye.  (By the way, I totally ripped that off from the cartoon, Gumball)

 

Taking Viagra Four Times a Day Is Not THAT Weird!

 

November 2, 2012

Please enjoy this  slice of my life, with blue sprinkles…

What most people know about Viagra, makes it sound weird  that woman would need to take Viagra four times a day, but after this post you will be able to explain why and hopefully make a comment about this post.  I want good and bad here.  Did you find it helpful?  Will you think of Viagra differently?   -because you know I will have to moderate a ton of “Viagra spam”.  (For the love of corn, comment! Please and thank you.)

I have scleroderma and sarcoidosis.  Let’s call scleroderma my “Anchor Disease”.  It was my first diagnosis and it has the most severe symptoms for me.  (That’s not an actually term, I just made it up, but it sounds nice and for our purposes here, I think Anchor Disease  works.) So, it all started with Raynaud’s, a symptom of many autoimmune diseases and can exist on it’s own, then it is upgraded to Raynaud’s Disease.  Raynaud’s is a symptom of scleroderma and part of the acronym CREST.  (How can one not love Raynuad’s.  Such versatility!)

So what is Raynaud’s?  It’s a sympathetic nervous system overreaction to temperature change.   When the body becomes cold, it slows the blood flow to extremities to keep the body’s core warm. With Raynaud’s, the nerves that signal muscle tissue around blood vessels overreact and rather than gently slow blood flow with a mild contraction, it chokes the vessels shut and can cut blood flow causing fingers and toes to fall off.  Seriously, I lost the tip of my thumb in 1996 because the artery to my thumb was completely shut and blood was flowing retrograde to the tip.  Oh and that’s not the punchline:  I had ovarian cysts that decided to pop all at once.  It was great times once morphene was on board, and not before specialists were brought in to rule out that the blood vessels to my colon, were not in a Raynaud’s spasm.  So, not only can Raynauds cause lost of fingers and toes, it can happen anywhere there is a blood vessel surrounded by muscle tissue that’s connected to nerve tissue.

How does Viagra or lesser known as (Sildenanafil) help in the treatment of Raynaud’s?  First, allow me to answer the question I am always asked: No, Viagra has no effect on my sexual performance.  Viagra, or Sildenafil, was designed to treat Pulmonary Hypertension in newborns.  Then, the BIG side effect was discovered and which overshadowed the versatility and life saving benefits of Sildenanafil.  This of course, a big break through to help men have a healthy sex life, but created a big headache for me and I’m sure many others, but it’s my blog and I can only speak for myself.  It gave me such a headache, my hair hurt.

You see, in 2005, I had a nasty ulcer on my left thumb that would not heal.  I was not yet on Sildenafil, I was still using niphedepine.  The artery in my thumb was in such a spasm, I started having flashbacks of 1996, when I lost the tip of my thumb. I did not want this to happen to my left thumb.  My doctors at the VA had already made sure I had a resource at UCLA and under the care of Dr. Furst.   The rheumatologists at the VA Hospital recommended I make the the trip to LA about  this issue.  They encouraged me to find a treatment they could learn from and use.  At the time, I had golden insurance.  I live over 100 miles from UCLA and even though the VA is only forty miles away, they did not yet have a treatment protocol for such severe Raynaud’s, so while preparing for my trek to UCLA, Dr. Furst, my rheumatologist  at UCLA advised by phone I double my dose of niphedepine to see if it works.  It didn’t, and crated a headache that felt like my head was hit with a hammer.  So, off to UCLA I went.

Under the treatment supervision of my favorite pulmonologist, Dr Ross, I was prescribed a medication that opened every blood vessel in my body.  I had to stay in the hospital during this treatment because of the high risk of my blood pressure dropping and my heart stopping.

From this, the medical team developed a treatment protocol to use Rovatio, to prevent the damage that had been done to my thumb for future patients.  Rovatio is low dose  Viagra.  There was no problem receiving it in the hospital, but once I got home, getting Viagra prescribed for anything other than erectile disfunction was nearly impossible.  Nearly.

I tried getting Viagra through my regular insurance first and eventually succeeded. But first, they required all kinds of information from my doctors.  Each insurance representative I spoke with, had no medical background, but was armed to the teeeth with clerical skills and they met my inquiries with laughter.  Eventually, my rheumatologist and pulmonologist produced enough research material to support prescribing the six dollar a dose pill to keep my blood flowing.

What did I do during weeks of waiting?  I relied on the kindness of my local practitioners.  I was given samples.  This was when pharmaceutical companies handed out samples like Pezz.  Oh and by the way, pharmaceutical reps had THE best quality pen covered with their logos and featured drug names.   Seriously, they wrote smoothly and I would always ask a rep for pens when I saw one.  I still ask when I see them, but I’m usually denied.   Back then, pharmaceutical companies had righteous swag, but I digress.

The laughter didn’t stop after getting approval for insurance companies to cover Viagra for me.  I would get asked stupid questions from well-meaning pharmacy assistants and of course my favorite, “What are YOU doing with Viagra?” said loud enough for other patients to hear was always a treat.  Often, I wanted to answer, “Yes, I need Viagra to keep up with my whoring ways.” But my son would be present and I had to take the high road and at least teach him to be nonjudgemental and not let him see the stupidity of others rub off on his mom.

Then, something magical happened. Our business went bankrupt, I lost my insurance and I was back into the Veteran’s Healthcare system.  My Rheumatologist at the VA had no problem getting Viagra approved.  There were a few hiccups.  We had to explain that I could not cut the dosage because it had to be exact.  The VA and many insurance companies classify Viagra as a “recreational drug”, which I think is bogus.  Having a healthy sex life is part of the big picture of overall health, but I’ll save that for my “soapbox post”.

So now, thanks to some traveling, time on the phone and a little kicking down the doors of stereotypes, I enjoy 50mg of Viagra, four times daily.  It keeps my fingers, toes and parts unknown intact and helps me breathe easier.  “Free to live a life of religious fulfillment”.  (Did you really think I would get through this piece about Viagra WITHOUT a quote and clip from Airplane!?)

There was also an additional unexpected side effect.  No, it had nothing to do with my sex drive.  It had to do with my lungs.  I notice it more now because my disease is progressive and it’s progressively effecting my lungs.  If I skip a does of Viagra (sometimes I forget when it’s warm) it is actually harder to breathe.  That’s right, Viagra helps my lungs breathe easier AND I recently found out from Dr Furst why that is:  Lung tissue reacts to Viagra the same way tissue  in the penis reacts to Viagra.  I was unable to find reliable research info to back this up this morning, but I did get the information direct from Dr. Furst, of UCLA’s Rheumatology department.  (I see him next week, so I will get the correct research information in print.  The search for the info will make your head explode.  If you do find a source backing it up, please, please post the link in comments!  I never like to discuss a research find without data to back it up in my posts, but it is a know obstacle when researching anything remotely related to Viagra, it;s best to just visit a medical library in person.)

So, I hope you enjoyed that slice of weird, courtesy of scleroderma.  Consider yourself enlightened of the clinical benefitTell your friends!

Links

Scleroderma Research Foundation

UCLA Rheumatology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=15&limit_division=1094&CFID=70251248&CFTOKEN=63458303

UCLA Pulmonology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=22&limit_division=1119&CFID=70251248&CFTOKEN=63458303

Oral Sildenafil in Infants With Persistent Pulmonary Hypertension of the Newborn: A Pilot Randomized Blinded Study: http://pediatrics.aappublications.org/content/117/4/1077.short

Background of Pulmonary Hypertension in Neonates and treatment http://www.nichd.nih.gov/cochrane/shah10/shah10.htm#BACKGROUND

Rovatio vs Viagra http://www.ismp.org/newsletters/acutecare/articles/20090129.asp

What is Revatio: http://www.revatio.com

Scleroderma In Depth Report by New York Times http://health.nytimes.com/health/guides/disease/scleroderma/print.html

Tammy Duckworth Inspires Me; Not Just on my Birthday

I write about my health because I have survived the worst.  This week, I will be turning 42.  A few months ago, I was listening to an interview of Tammy Duckwork.  She is a female veteran running for Congress (take the time to read her amazing story.)  I have done nothing nearly as amazing and heroic as Tammy Duckworth, but we all share something in common with her; each day, all of us face challenges.   Some small, some large and some we would not wish on our worst enemy.

In her radio interview, Tammy Duckworth, said something that really struck a chord with me.  She talked about the people who carried her from the battlefield and those who worked hard to save her life.  I don’t really remember the exact conversation, I just remember one statement, “What would the people who saved me think?”.  I understood it as, when things get tough, she remembers those who helped keep her alive and it kept her going.

Everyone has their own interpretation about things people say, but when I heard what she had said about the people who saved her, I realized she was right.  I have been near death three times.  And I started thinking of the many medical professionals and family members who worked hard to help me.  Not only in the past, but people help me all the time and I am so very grateful.  Those who have and still do help inspire me.  And when I get down, I now think of them in my corner and it’s like a hug.  It also motivates me to do more for others.

I will be 42 this Saturday and to be quite honest, I did not think I would make it this far.  I have made a lot of mistakes.  Some of them pretty dumb and some; just products of panic, frustration and to be quite honest, sorrow.

I also wanted to work, but found that it would be unfair to my co-workers because I am not reliable.  It’s not a bad thing, it just is.  Im not cannot be counted on to be on time for work or even be at a workplace because my health has to come first.  I have frequent doctor appointments and there are days I need days to stay home and rest.  Sometimes this rest is voluntary and sometimes I am forced to rest because of pain or an infection.  I tried volunteering at my local Boys and Girls Club and the director was very understanding because I missed many days, but I was very hard on myself about missing work,  so I decided to move on.

I started to focus on what I could do.  I had been attending writing workshops at San Diego Writer’s Ink.  I loved it and it helped me come out of my shell as a writer.  I learned to take risks and learn to enjoy criticism, because I can only learn from it.  I thought about going back to school, but a master’s degree requires a big commitment and having a young son, I wanted to have flexibility to be with him.  So I made a list of things I have been doing since college to try and come up with a way to participate with the world outside.  Everything was related to health; good and bad.  So, I decided to write.  I started a blog called, “Scleroderma, Sarcoidosis and Box Wine.”   I wanted to bring humor to patient advocacy because some of the things that have happened in my life, as crazy and as scary as they sometimes were, had moments that made me laugh.  That laughter broke the tension and lightened my load.  Reflecting on these experiences made me find even more humor in them.

Shortly after I started writing and began to met people on Twitter and Facebook with other conditions, I realized we had many overlapping symptoms, similar situations and I wanted my blog to be about more than my two diagnoses.   The truth is, chronic illness or not, everyone struggles with obstacles in their life that force us to adapt and overcome.  While we adapt and overcome, we meet new people, strengthen relationships and become who we are because of what we experience and learn.

For me & many, life is about adaptation- chronic illness or not.  It is not amazing when  anyones accomplish something because they have a chronic illness; it is the accomplishment that is amazing.  Our illness or anything that is tough to face, just helps to shape our experience.  It becomes part of our story.

I came up with the name The Mighty Turtle in 2011.  My son and I have been watching nature documentary for years and I was always inspired by the turtle’s ability to adapt and over come.  They outlived the dinosaurs.  So, after years of hearing, “Sclero-what?” when telling people the name of my blog, I changed the name and a friend at Websipe.com built me an amazing site.

Usually, I post about every five to seven days.  I decided to join Wego Health’s 30 Days 30 posts and I’m going to post every day in November.  I tend to over edit and by taking part, I hope I will be less uptight and just let the words flow and post them.  I’ll still be editing, but with less time, I will be less filtered.  Maybe I’ll be funnier.  Maybe my writing will make a great insomnia remedy.  Either way, I am looking forward to reading my fellow bloggers posts, getting to know more people and most of all; have some fun!

Scleroderma, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!

Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 

 

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community.  I had given up on some goals I had originally set and  I couldn’t shake the feeling I had nothing left to offer, until this past Sunday. September 1st, I started a morning routine that I have committed to doing for 40 days.  It’s some deep breathing and mediation.  (And yes, I have had to start my 40 days over after skipping my third day; and yes I will be blogging about that once I complete it.) Back to my point: Sunday morning, I opened my eyes at the end of my routine and my answer was staring me right in the face.  It was a dry erase board filled with ideas, topics and goals on it.  I realized I was not disappointed because of what happened.  I was disappointed because of what had not happened.  This dry erase board was crying out to be read.  These were my ideas and my stranded ideas had been subconsciously begging me to release them from their two dimensional prison.  (Cut to Superman 2 and those villains hurling through space in their triangle.) So, I’m setting them in motion.   First, I added another FaceBook page, The Mighty Turtle That Could. It’s entirely devoted to activity.  Not all patients are into or able to do activities so I made it separate.  So far, I have been the only participant, but eventually, someone else will share.   In addition to my Facebook page, I added an online publication of the same name.   My original idea was a page to get patients moving, but I remembered not all patients should or can move; so, I made it about activities.  This could be just some simple deep breathing, “head bopping”(Lexie) to some music and of course exercise.  I want people to share their success, goals

If you are able, you can share this publication with friends and family through social media like Facebook, Google+, Twitter, Linkedin and more.  By sharing, you can do more than just raise awareness; you can help patients, family members, friends and caregivers who feel isolated find others who are in the same boat.
My experience with social media has shown me I am far from alone with scleroderma, sarcoidosis, depression and coping with progressive degenerative diseases.  My very first friend with scleroderma, I met on Twitter.  She lives in Denmark and I am close with  Another, in Indiana.  We are all truly in this together, and there are no geographical boundaries, thanks to social media.

So, as the bricks fall from my wall,  I have accepted I do not type as fast as I can think.  My thoughts flow through my hands as they have always done, so voice recognition software is not an option.  I suppose it could be if I tried, but it makes me feel good that I can still create with my hands.
Thank you for continuing to read this blog.  I hope you will visit other writers on my blog roll and www.sclerodermablog.com Reading the blogs of other patients and topics other than Scleroderma and Sarcoidosis not only helps to raise awareness, but reminds us we are not alone and we are not our diagnosis.
If you blog and you would like to add your post to The Mighty Turtle That Could publication or find one you would like me to include, contact me through FaceBook or Twitter
*If you are unfamiliar with term, “Hitting the wall.” It’s a term most often used by athletes, but it can be applied to personal ambitions as well.  In this scene, from Run Fat Boy Run, Simon Pegg’s character is brilliantly shown breaking though his wall near the end of a marathon. Here is the set up:  His character is not a marathon runner, but runs a marathon in attempt to win over his former fiancé he left at the alter years before.  Before he busts through his “wall”, Pegg’s character has to face his feelings.  To me, it is a very powerful scene about how no matter how many people we have supporting us, we still feel alone.  We need to face our fears and feelings we have stuffed in order to feel connected with those supporting us.   Click Here to watch.  Please comment if you have felt this way.

Transient, Inconsistent, Unexplainable Pain and Other Freaky Good Times With Scleroderma

Half of a dog's face who appears to be confused.

Really?

This post was inspired by a fellow  scleroderma patient on Twitter.  Thank you @MS_Crest!

Dear Scleroderma, Please stop messing with my friends.
No Love,
Me.

Okay, so that “love” note is entirely ineffective, but I must admit that that note is a giant improvement of how I communicate with the scleroderma that insists on attacking my body.  Yes, I do talk to all of the diseases of my body as if they are separate entities.  I do that because I once thought of myself as scleroderma, and treating scleroderma & sarcoidosis as unwanted house guests just feels good.  So, about that transient or inconsistent unexplainable pain…

Transient pain is where the pain feels like it’s shooting or moving.  Inconsistent can be many things, but I will define it for our purposes here as: Pain that shows up out of the blue.  One day its your hand, another day it’s your wrist and then you feel pain somewhere else.  The funny thing about inconsistent pain from my own personal experience is that it’s not that one pain goes away and another pops up.  No, we would be expecting that.

Allow me to give you an example of what I call, inconsistent pain.  

Two days away from a routine follow up with your rheumatologist, your left hand hurts.  Not just your whole hand, the pain is in your palm.  It feels like their isn’t enough room inside your hand for your bones.  You take whatever is prescribed by your doctor and the pain persists.  Then you wake up in the morning and your wrist hurts on your right hand.  Here is where this gets weird: It’s not that the pain went away in your left hand, it’s just that the pain in your right wrist is worse than the pain in your left hand.  The next day is your doctor’s appointment and you can’t wait to tell your doctor about your wrist and your hand and because there is actually pain present.  Your doctor mihjt be able to see what’s going on, so you go to bed that night in pain, but a little reassured because you have something to tell your doctor that’s new and help clue him/her to what course of treatment to take.  You go to sleep, with the aid of pain medicine and look forward to some information from your doctor.  And yes, it is normal to feel like you are part of the mystery solving team of Scooby Doo and friends.

Unexplainable pain.  Now, I’m just going to get freaky on you.

You wake up the next morning and the heels of your feet are in excruciating pain.  You have trouble walking barefoot on hard floors.  It hurts with every step and pain medicine is as effective as Tic-Tacs at this point.  You manage to get yourself to the doctor.  You see him/her and discuss your feet.  He makes arrangements to get you wedge pillow or advises you to go purchase one so you cam sleep with your feet elevated.  What may have happened is that just the simple weight of your own feet put enough pressure on your heels to decrease blood flow to your heels, leaving the tissue in your feet sensitive to every movement of every cell in your foot.  (Cut to cheerleader yelling, “Goooo Feet!”)

Other good times with scleroderma.

You leave the doctor’s office relieved there may be a simple solution to your foot problem. Then you get behind the wheel of The Mystery Machine  in 38 degree weather and remember the pain in your hand and wrist.  Disaster, right?  Time to panic?  NO.  You go back into the office or call as soon as you get home.   Let the receptionist know you forgot  about your other issues.  If you happen to be in the office, ask if you can see the doctor after the patient he/she is seeing already for just a quick question, or ask her to leave the doctor a note about your hand and wrist.  Then if you do not hear from your doctor’s office by the end of the business day,  call your doctor’s office the next morning to follow up or do “the pop in”.  I have done “the pop in” on severe occasions.  If you do the pop in, just remember you will most likely not see the doctor or will have to wait to see the doctor if it’s even possible.    You will most likely pick up a referral for an x-ray, MRI or OT,  which will be very helpful.

Speaking of Occupational Therapists…

If you feel your hands, wrists, elbows or feet are changing because of scleroderma, anytime is a good time to ask to be referred to an occupational therapist.  Occupational therapists will annoy you at times because they will give you exercises to do consistently.  Make the exercises a part of your daily routine.  We can’t always stop a freight train, but  it is possible to slow it down enough so that it feels like it has stopped.  And if you are able to keep your range of motion through exercise, don’t let that lull you into a false sense of security that you may stop those exercises, especially if you are experiencing symptoms of depression.  Depression and loss of mobility will feed each other- and that’s a whole other post.

Put the hammer down and step away.

So, your body will have pain in different places at the same time.  It’s confusing, like treating a headache by hitting your toe wth a hammer.  Your toe hurts like hell, but your headache is gone.  Then when your toe feels better, the headache comes back.  You think it;s a plot.  It probably is on a cellular level.  Mitochondria gone mad.  There is no way of knowing and the idea of a plot could distract you from your pain.  Be creative and let your freak flag fly.

Does Scleroderma have you confused?  This video won’t help with that, but you will learn what the show “Soap” is.  This is very useful if you find yourself  playing TV trivia.  Never underestimate the power of useless trivia.  I’m a helper and you are welcome.  Confused?  You won’t be after this episode of Soap

 

 

 

Because I Can

So, after further review of the budget, I had to stop maid service.  It takes e a very long time to clean, but  I decided if I tackle one cleaning job a day, I can stay on top of things.  Yes, it is tough and time consuming, but only if I do it all in one day.  I can’t believe I didn’t think of this sooner.  I could have saved so much money!  So today, I took on my first task; my closet and my bathroom.

I used to sit and dread cleaning.  Not today.  Just knowing I was only doing my closet and bathroom made my objective possible.  I did it.  I still felt energized, so I  moved on to the laundry, but I didn’t get too involved.  See, my old behavior would have been to keep going until I hurt myself or collapsed into a sweaty heap on my bed at the end of doing all my chores at once.  That sounds like not such a bad thing, but that kind of behavior  would result in the following day being immobile, in pain and grumpy.  So, maybe my other bathroom is a mess, but that can wait until tomorrow.  I can spend an hour or two, take my time and have the rest of the day to have fun.

Yes, I can do this.  It will result in more pedicures and possibly a vacation.  A real vacation, not a trip to a relative’s house. I mean a real vacation.  Yes, I want to stay somewhere I can swim to the bar.  Just because I can’t drink doesn’t mean I should give up on my dream.

Maybe not exactly this house sitting gig, but it does get me in the mood. Click here to enjoy  Someplace tropical where I have to swim to the bar, with fewer banana hammocks and more board shorts.

Did You See The Size That Blog Roll?

I am loving the changes to The Mighty Turtle. One thing I would like to point out is my Blog Roll. It’s not just for the Chronically Awesome, Spoonies or anyone chronically ill. There is more to us than our diagnosis. Right now I have a list of things that interest me. Are you a blogger or know a blogger who might like to be added to this blog roll?

After setting out to blog in 2009 about Scleroderma and Sarcoidosis I learned that many Autoimmune diseases, cancers and chronic illnesses have similar symptoms, personal challenges and mental health issues patients cope with every day. In short: We have different diagnoses, we cope differently and we have a great deal to learn form each other.

At first, I tried to think of a way to have different bloggers for different diseases, but let’s face it: I don’t have the organization skills for that. Also, I need to take care of my health and family. I want to have a life and write. I read so many wonderful blogs, I thought it would just be best to have a list with links.

I am happy to list anyone who wishes to be listed on my blog roll. There are already blogs there that are not about chronic illness but talk about politics, parenting, daily life- things that have nothing to do with our illness because we are not our diagnosis. After years of therapy, I found my biggest problem was I could not separate my “self” from my diagnosis. So, I want to include topics in addition to being ill and having symptoms

Here are the rules about blogs that will not be posted on my blog roll:

1. Snake Oil: There are no miracle cures for anything. If a products works for a person and helps them, great. I want people to talk about things that work for them and name the products if they wish; this includes alternative therapies. But any mention of miracle cures will not be tolerated.

2. Bigotry will not be tolerated.

3. Harassing other bloggers or patients: I post these blogs on the blog roll but I cannot police them all the time. Please let me know if any blog listed on the blog roll harasses you or anyone else.

4. We are NOT turtles: The Mighty Turtle is a symbol of our ability to adapt and overcome. There are enough communities with nicknames. We are individuals that belong to a community: The Human Race. (Just wanted to clarify that one.)

My goal with The Mighty Turtle is just to provide a place for people to find others they can learn from and collaborate, ask each other questions, follow each other on FaceBook, Twitter and/or Google plus and anything I missed. We are in this together and with enough voices, we can be heard. Together, we are stronger.

Thank you for reading. Again, if you are a blogger and don’t see yourself on my blog roll go to “contact” and send me your links. If you feel like it, tell me a little about you and say hi.

A moment of Young Guns: The title of this post was inspired by a famous scene from Young Guns. Click and enjoy:
“Did you see the size of that chicken?”