Got #LUPUS? 1.5 million US & 5 mil worldwide do!

gotlupusGot #LUPUS? 1.5 million US & 5 mil worldwide do! SLE is an autoimmune disease where ur body attacks it’s own healthy cells-Share 4 a Cure! http://ow.ly/i/zZfdF

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RT New York Jets It’s #Lupus Awareness Day!

nyjetsRT New York Jets It’s #Lupus Awareness Day at @MLStadium! All funds collected @ gates will fund lupus biomedical research

 

 

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RT @ACRSimpleTasks: Feeling down? Here are @CreakyJoints “Six Steps to Finding Joy While Living With A Chronic Illness”

creakyjoints

Here are @CreakyJoints ‘Six Steps to Finding Joy While Living with a Chronic Illness’ → https://t.co/aKfEteqF6o #Rheum Original Post HERE

Joy. A feeling that can be simple or grand, experienced in a multitude of ways, and occur when least expected.

It may be the sound of your child saying your name for the first time, getting the job you have always wanted, or the thrill of attempting a new adventure. It is a word that conjures up different visions for each of us. And sadly, it is a feeling that often gets lost in the shuffle of living with a chronic illness. Instead, the focus becomes managing pain, a new lifestyle that was never asked for, and trying to figure out the unknown. With all this happening, how can one ever get the feeling of joy back.

1. Slow down

Chronic illness has a special way of reminding us that we need to slow down. Just to be clear, slowing down does not mean you have given up or you are letting your disease win. It simply means you are respecting where your body is right now and reaping the benefits. By slowing down, we can enjoy the moment we are in in its purest form.

2. Practice self-care

We are a busy society with very full schedules that generally don’t allow for self-care. Instead, we keep going until our bodies finally say, “no more.” At this point, a full flare takes over – our bodies amazing way of demanding we slow down and take care of ourselves.

Self-care is 100% necessary for everyone, but even more so when living with a chronic illness. At first it might selfish to set time aside for yourself. But keep at it. Soon, you will see that it not only helps your body, but also allows you to feel joy in ways you may never have experienced it.

A few simple self-care starter ideas:

  • Add five minutes to your daily routine to stop and just breathe
  • Step away from the computer/phone and thank one part of your body for the amazing work it is doing
  • Hug someone you love. When hugging them, really feel it. If you do, that amazing feeling will stay with you all day

3. Gratitude

Finding gratitude while in pain takes time and patience with yourself. I remember when my knee had been swollen for months and I could barely move it. The pain was awful. However, each night as I rubbed it, I said thanks to it for getting me where I needed to go or holding me up in class as I taught, despite the pain it was in. Almost immediately, I began thinking of all that my knee does for me while in pain rather than hating it for the pain.

To me, gratitude is magical. When I reflect on one good thing that is happening, my mind instantly thinks of another one and then another. Feeling joy rather than anger is a much better place to be.

  • Start each day with two things you feel gratitude towards
  • During the day, connect a random sound to gratitude. I use the windchimes in my back yard. I can hear them in my office and the kitchen where I spend most of my time. The sound of the chimes is a simple reminder to stop and find something good that moment. Often times I just close my eyes and say, “Thank you for this moment.”
  • Before nodding off to sleep, remind yourself of two things from the day

4. Remember that chronic Illness is only one part of your life

While your health condition may intertwine itself in all parts of your life, it is not your entire existence. Other things are still happening around you. Look for those things – a delicious meal, snuggling with your child to read a book, or enjoying a glass of wine with a good friend. Feeling terrible all day every day takes a lot of work. Separate your illness, even for a short time, and feel the energy that comes from the joy remaining in other areas of your life.

5. Find your purpose

I often tell my students and own kids that when you know your purpose in life and you are making it happen, joy naturally follows. I am surprised at how many people don’t know their purpose in life. What I suggest is thinking about things that you are naturally drawn to repeatedly or the things that others complement you on. For some people, their purpose may be as simple as having a smile that turns other people’s days into beautiful ones.

Do you know your purpose? It changes as life brings us new challenges. When you find it, absorb all the joy that it brings with it.

6. Connect with people who find joy in your joy

One of the best feelings is when you share something wonderful, no matter how small, and the person you are sharing it with beams. They don’t try to compete with you or even feel the need to share something of their own. They just bask in your joy. Find those people, surround yourself with them, and then give that gift right back.

Joy is ever-changing. What brings you joy today may be different tomorrow. Keep searching for it. Keep spreading it. It is a gift that we in the chronic illness community need a lot more of.

To read more from Cathy please visit her personal blog 

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3 Easy Steps To Find The Right Doctor!

lifechangeWhy is the right doctor important?

You MUST want to follow your medical plan in order to have the most quality of life when you’re living with chronic conditions.  In order to do that you MUST WANT to live up to your physician’s expectations based on your treatment plan.  If he/she doesn’t have expectations of your disease and your health, then you have NO PLAN.   No PLAN?  Get one!  Here’s how:

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  1.  The Appointment

Bring the FOUR P’s for your PLAN:  Pad, Paper, Pen & a Person.

This shows you mean business.  Your here to write down your medications, the times you take them, what to do if they are causing side effects or need adjusting, to bring medical issues to your doctor’s attention (try & keep them down to 3), and to listen, learn & make a list (The THREE L’s) to bring some improvement into living with your chronic condition!

Bring someone with you to your appointment, they are your BACK-UP.  They are there to do everything you are doing & to share notes with afterwards!  Bringing someone with you to your appointment can make all the difference- some physicians may take their questions more seriously than if you asked it.  People who know you and your symptoms may not be as afraid to tell the doctors what and how intense some of the symptoms you are having REALLY ARE!

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2.  What if your doctor still doesn’t seem to be listening?  Make an appointment for one reason, and one reason only.  To talk.  Q & A time.  You can even ask the doctor to see you AT HIS or HER DESK!

“Why?” you ask?  This shifts the dynamic of the appointment in several important ways!

It puts you, the patient,  eye to eye with your physician- it reinforces that you and your doctor are a TEAM with one goal in mind:  YOUR SUCCESS at living the best life you can under the circumstances of having compromised health.

It shows your physician that you are serious about your health!  And that’s something ALL DOCTORS WANT TO HEAR!  This will not only impress your physician, but it will bring you closer together as a TEAM.

And last but not least-

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3.  The Follow Up:

Without actually following up with your doctor, all your hard work can go down the drain!

This is the time where you make an appointment with your doctor to discuss how the medications are working, the intensity of your symptoms and any new symptoms.  If you’ve done your job your physician is now attentive to you and your health goals.

The RIGHT DOCTOR can make all the difference in your efforts for quality of life.  When you have a doctor who believes in you- you will try harder!  It really makes a difference!

If you’ve spoken to your doctor and you aren’t getting that “team vibe”, and it’s more than “he seems too busy” or “he’s having a bad day” kind of thing, it may be time for hiring a new one!  Yes, your physician works for YOU.  YOU are paying HIM.  And don’t feel bad, a good fit is very important to your success.  Doctors are like night and day., they truly are.  No one is alike.  Feel free to go so far as to INTERVIEW your doctor before you commit to being a patient at his/her office!  You are ENTITLED to choose your doctor! After all, there is nothing more important to you than YOUR HEALTH!

 

 

 

 

When you get home ORGANIZE your medications.

 

Hey! Chronic Pain Patients- Fight Back!

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My little-ole story really isn’t much.  There’s lots of pain patients just like me!

What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working!  None of us expects to be pain-free. But managing is power!

Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.

I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.

Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.

That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.

I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.

I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you!  You gotta kiss a lot of doctor frogs before you find a prince!  Don’t be afraid to find one that you have the right fit with!

My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.

Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now!  He’s given me quality of life and I am grateful for his expertise.  He’s offered me procedures I didn’t even know existed!  Thanks to him I am mobile.  I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!”  WHAT?  And he DID!  Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure!  NO kidding!  Goes to show that you never know what one doctor knows that another one doesn’t!

A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.

Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.

Kudos to all you do to get our voices heard!

If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!

And here’s a link to JGF Advocacy Group on fb:  Pain Is Not Addiction FB Site!

Sincerely, JJ

WHAT’S YOUR STORY?  Plz share in comments!

A Country of Drug Seekers (???)

Posted on May 23, 2017 

By Steve Ariens, PharmD., (LINK TO ORIGINAL ARTICLE HERE!)pain is inevitable

(Editor’s Note—For the past several years, retired pharmacist Steve Ariens has shared his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain. I received an email from him this past weekend which started an interesting discussion about whether chronic pain patients are “giving up”. Both of us sense a frustration. I asked for permission to republish this column he originally posted on his own site, pharmaciststeve.com. Please read it and then share your opinion on the “state of chronic pain” these days.)

There are about 4.5 BILLION prescriptions filled in the USA every year – in community pharmacies and via mail order pharmacies. –  We have some 320 million residents—doing the math that means that each person would have 14 prescriptions filled each year.

Most of the prescriptions are filled by people who are “seeking  to improve their quality of life”.

This time of year a lot of those “drug seekers” are known as ALLERGY SUFFERs–they seek out antihistamines, cortisone nasal sprays and other substances used to control their allergy symptoms and improve their quality of life.

No matter what disease state or condition/syndrome a person is dealing with.. all too many will seek out some medication(s) to help to control the undesirable symptoms from the disease.. basically.. the person seeks out to improve his or her quality of life.

Some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.

If you take a step backwards and try to look at those who take/use opiates and controlled substances.. and consider those that take them legally and those who take them illegally– because our society will not allow them to obtain them legally you ask” Are they all that different ?

Both are typically suffering from depression, anxiety and physical and mental “pain”. Both are trying to “improve” their quality of life… just what their own opinion/definition of “improve” may be can be quite different.

Those who are suffering from the mental health issues of addictive personalities.. they have demons in their head and/or monkeys on their back. They are just “seeking” to improve their lives by attempting to silence those demons and monkeys. Their “high” is getting some solitude from those things causing them mental pain.

Those that suffer from chronic pain are also “seeking” their own particular “high”, but their high is to calm the pain that torments them and keeps them from participating in a “normal family life”.

IMO, there are those in the chronic pain community that want to point fingers at those who our society has labeled as “addicts” and continue to point out “that is not us/me”… it is “them”..

People with mental health issues have always been “looked down upon” ..  just told to “suck it up and get over it”… our health insurance system has normally had poor coverage for seeing mental health professionals.

Is this part of the puritanical thread in our societal fabric that is still part of the “witch hunts” from the late 17th century in our country ?

Are those in the chronic pain community doing themselves any favors by agreeing with the DEA that those with mental health addictive issues are “bad people” and CRIMINALS?

Recently our previous Surgeon General declared that addiction is a mental health issue and not a moral failing http://www.huffingtonpost.com/entry/vivek-murthy-report-on-drugs-and-alcohol_us_582dce19e4b099512f812e9c

Does it make any sense that two different major Federal agencies and members of the Presidential Cabinet (DOJ & Surgeon General) are on opposite sides of the same coin… in dealing with people that are suffering from chronic conditions that opiates and controlled substance can help people deal with their health issues?

(Thoughts on this? And the state of chronic pain these days?—Please share in National Pain Report’s commentary section HERE: (NatPainReportCOMMENTS)

 

My Reply:

Hi Pharmacist Steve!

I’ve often wondered about the term “Self Medicating”. It’s encouraged if you have an allergy and let’s say, use benedryl and calomine. It’s fine if you take an aspirin or tylenol for a headache. It’s just dandy if you take an antihistamine for hay fever or alka seltzer for a stomach ache. Got constipation? Sure, take a laxative! No problem!
But live with chronic pain and want relief? Want to self medicate for that? OH NO, Now you’re labeled an addict!

Most of us chronic pain patients aren’t looking for a high. Like you said Steve, we’re just looking for quality of life, same as every “self-medicating” person is doing for their “acceptable” conditions. Studies say actual chronic pain patients don’t become mentally addicted…And so you gotta ask yourself..does a person with a bad cough get mentally addicted to their cough medicine they have to take to calm the cough?

In all honesty, I’m tired of the stigma attached to opiates and really tired of one set of people (who usually have never experienced chronic pain & have no medical training whatsoever) deciding for the rest of us what is good for us. We are individuals, should be reviewed individually and we should be allowed to live our lives the best way we can!

Sincerely, JJ (Lupus, TN+)

How Many Specialists Do YOU Juggle?

My LUPUS Presentation! Sign up at http://www.Brightbod.com or go straight HERE at 4pm PST Wed, May 24th! Link: https://zoom.us/j/8260195856