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.

 

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Hey! Chronic Pain Patients- Fight Back!

painknuckles

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

Muscle Pain, Stiff Fingers & Gastro Issues, Oh My…. WHICH Autoimmune Disease Could It Be?!!!

autoimmune-picture-treeCould This Be An Autoimmune Disease?

Someone asked the following QUESTION:

My entire life has been on pause for 3.5 years, I went from being the most active person I know to someone who even getting dressed or taking a shower is a big painful struggle. I’ve seen dozens of doctors and spent thousands and thousands of dollars and hundreds of hours researching, and so far the only thing I get is all blood tests being normal and I’m told it’s no big deal. I would so so so so grateful if you can help in any way – I literally do not have a life or a future right now and spend about half my awake time in too much pain to do anything.

Symptom summary:

– muscle pain in left flank almost 24/7

– pain in left SI joint almost 24/7

– pain in lower left ab

– gastro issues (diarrhea, bloated 24/7, gasy ALL the time, stomach aches daily)

– distended areas in stomach

– right knee and right shoulder almost unuseable

– all joints popping constantly from any movement

– very cold right hand fingers and stiff fingers

– tremours/shaking in all muscles when not in rest

– different pains in different body parts daily, seemingly random

My ANSWER

I’m not a medical pro- just someone with systemic lupus & reactive arthritis.  But here’s my best guesses & suggestions:

Have you had an MRI or cat scan during a flare-up of your si joint?  I’d get that done during a flare and see if it shows inflammation.  Your gastro symptoms and si joint (sacroillitis) could be related to reactive arthritis or ankylosing spondylitis (and yes, it can be chronic) (& painful).  You can get checked specifically for the HLA-B27 gene by a rheumatologist who knows what to look for.  Here’s some info:  How Is Ankylosing Spondylitis Diagnosed?

A diagnosis of ankylosing spondylitis is based largely on the findings of a medical history and physical exam. Radiologic tests and lab tests may be used to help confirm a diagnosis, but both have some limitations.

Medical History

The medical history involves answering questions, such as the following:

How long have you had pain?

Where specifically is the pain in your back or neck? Are other joints affected?

Is back pain better with exercise and worse after inactivity, such as when you first get up in the morning?

Do you have other problems, such as eye problems or fatigue?

Does anyone in your family have back problems or arthritis?

Have you recently suffered from a gastrointestinal illness?

Do you have any skin rashes such as psoriasis?

From your answers to these questions, your doctor can begin to get an idea of the diagnosis.

Physical Exam

During the physical exam, the doctor will look for signs and symptoms that are consistent with ankylosing spondylitis. These include pain along the spine and/or in the pelvis, sacroiliac joints, heels, and chest. Your doctor may ask you to move and bend in different directions to check the flexibility of your spine and to breathe deeply to check for any problems with chest expansion, which could be caused by inflammation in the joints where the ribs attach to the spine.

Radiologic Tests

X rays and magnetic resonance imaging (MRI) may be used in making or confirming a diagnosis of ankylosing spondylitis, but these tests have limitations. X rays may show changes in the spine and sacroiliac joints that indicate ankylosing spondylitis; however, it may take years of inflammation to cause damage that is visible on x rays. MRI may allow for earlier diagnosis, because it can show damage to soft tissues and bone before it can be seen on an x ray. Both tests may also be used to monitor the progression of ankylosing spondylitis.

Lab Tests

The main blood test for ankylosing spondylitis is one to check for the HLA-B27 gene, which is present in the majority of Caucasians with ankylosing spondylitis. However, this test also has limitations. The gene is found in much lower percentages of African Americans with ankylosing spondylitis, and in ankylosing spondylitis patients from some Mediterranean countries. Also, the gene is found in many people who do not have ankylosing spondylitis, and will never get it. Still, when the gene is found in people who have symptoms of ankylosing spondylitis and/or x-ray evidence of ankylosing spondylitis, this finding helps support the ankylosing spondylitis diagnosis.

My other guess would be Crohn’s, (or IBD) maybe.  But the joint involvement tells me it’s more systemic than Crohns or IBD.  Do you have any eye issues?  Recurring uveitis is a biggie with AS (I hate it and get it all the time). It’s inflammation in the iris.  You don’t have to have it tho to have AS (ankylosing spondylitis)

As far as Rheumatoid arthritis, I’m sure you’ve had an RA Factor and an anti-CCP antibody test for dx.  I’m assuming you’ve seen rheumatologists..

Your cold hands sound like Raynaud’s Phenomenon, common with mixed connective tissue diseases.

Also as far as mixed connective tissue disease, they often overlap, and the best test to have is a Direct ANA Panel which will separate the antibodies and give your rheumie info on where your disease is pointing.  Most people get just the one ANA test-a TITER test, but I’d like to suggest you have the PANEL done, as it’s much more specific and you can be negative on the titer but positive on the panel.  Also remember these proteins of autoimmune disease don’t always show up right away in your blood.  Sometimes it takes testing over and over to hit it at the right time.

You should also have a CRP (C-Reactive Protein) test to look for inflammation in your blood and an ESR (sedimentary rate) also to check for inflammation.  Testing your C3 and C4 complements in your blood is also helpful to show if you have something autoimmune going on.

And DON’T GIVE UP!  Lots of us wait long long times for a dx.  Hang in there.  All doctors

autoimmunemantra

How To Find a New NORMAL & Change Your Game!

otherside
What you once took for granted (walking, working, taking care of family & yourself) can suddenly become difficult when faced with any chronic disease & chronic pain.  What you once did effortlessly can start to look like a mountain to climb when managing illness-so what do you do?

Well, first you examine your status honestly.  You assess your abilities. Here’s some of those questions you may be asking yourself-and some suggestions to help you find a NEW GAME to make them happen!  After all, life isn’t going to stand still-the kids still need to eat, the house still needs cleaning & stocking, and very likely-this means you MUST adapt.

FINANCIALLY SPEAKING!

Can you work, but not reliably?  You may not be able to punch a clock any longer-but you’ve got some energy and love for keeping some part of your career in your life? You HAVE OPTIONS but you must make them happen!  They aren’t going to come to you-you must prepare!

You may want to apply for social security disability.  You are entitled to the money you put into the system if you can no longer work or earn what you used to because of chronic illness.  You can apply even if you still work as long as you do not make over $1020 monthly. It’s time-consuming but do-able.  You can apply online at http://www.ssa.gov.  You don’t need a lawyer to apply-and most lawyers actually want to wait until you get your first denial to take your case-so applying is the first step.  Remember-this isn’t an easy or immediate solution.  This is thinking ahead for your future-it may take up to 3 years to get approved (no guarantees either) but stay vigilant. It’s usually a matter of WHEN, not IF that you will be awarded SSDI. So hang in there-and get started!

Now that your thinking long term-you can think short term.  What about NOW, what about the sick days, the doctor appointments, the unreliability factor in your work or job performance & attendance.  Well-I suggest take it head on.  Ask for part time and keep records of your physical health and lack of work ability.  This will be important to your SSDI case if you have applied.  

Asking for less hours is a necessary tool to keep your stress levels down and your disease symptoms minimized.  It’s a MUST.  You may end up surprised that working less hours brings you better health management.  If you can take your work home, ASK!  You never know unless you bring it to your boss’s attention-if you are working in an occupation that you can be productive from home-making your own hours can take away that issue of not being able to do a 9 to 5!  It’s always worth a try!  If possible, you may want to consider working as an independent contractor-this way you can continue your work at your own pace-and from home, where it can be much easier to manage your health, it keeps you in the career you love, and continues to bring in an income!  If there was ever a time or reason to give being independent a shot, THIS IS IT! If the company you work for or your occupation doesn’t offer a “work from home” alternative-maybe spend this time looking for one.

For immediate financial needs if you reduce your hours or find yourself out of work due to health issues is to apply for state help.  Food stamps are usually available on an emergency basis, you can apply online in most states and many cities have community services that might be able to help pay rent and utilities.  Churches and synogogues can be very helpful assets as well.  You may be able to find roomates to share expenses, caregiving opportunities or bartering options!

Once you’ve got your long term and short term financials down-it’s time to manage your home, your family and your disease.  Once again, you’ve got to change your game!

MANAGING YOUR HEALTH!

Get your doctors and specialists in order.  Make a folder for all your medical records (labs, doctors notes, etc) and keep it updated. This is two-fold. One-it will be necessary for your disability case later on, and Two-you can better coordinate your healthcare this way.  Bring your newest labs, tests, dx’s & list of meds to all your appointments.  This shows your docs you mean business and your taking your care seriously.

Ask questions!  If you need better pain control, it’s time to get that referral to a pain management specialist.  They can offer ways to manage pain that go beyond simply taking medications. There are procedures, cortisone shots, nerve blocks, and surgeries that can make your quality of life BETTER!  Now’s the time to take care of YOU!

Get all your specialist appointments caught up, see your general practitioner and get all the referrals you need to your specialists!  Now is the time.  Again, this will help you manage your chronic disease & give you the paperwork and info you need for your disability case.  Remember ASK QUESTIONS at your appointments!  If you are undertreated, or suffering, SAY SO, and ask.  It might be time to change your medications!  If your not feeling that your doctor is “on your team”-FIRE HIM/HER!  Docs are like night & day.  A good fit is very important. It can mean the difference in your attitude, your pain level, the very basis of how you feel about your disease can change with better quality control of your healthcare. Make those good choices NOW!

And lastly- HOW TO BRING IT HOME!

Time to manage your household.  The players have changed so your game must change too!  You must try to take control of the house by managing your time and abilities!  DELEGATE CHORES!  It’s all about the organization of the household and family working as a TEAM!

Cook meals in advance if you can and freeze them for another day.  Take your time preparing meals, doing the prepwork in stages.  (Cut up the veggies, then go sit down.  Go back & do some more, etc)  Get family to help out with the everyday homecare things like washing clothes, putting them away, walking the dog, doing the dishes, straightening the house!  You can no longer do it all.  You can even arrange a meeting with family and your doctor to discuss what he/her thinks of your abilities-having a knowledgeable professional to relate your needs to your family can go a LONG WAY!  This could be your doctor, your parents, anyone other than you!

It’s all about QUALITY OF LIFE and FINDING that QUALITY!   You may still be able to do the things you love, keep the career you’ve worked so hard for and wanted but in a different way!  You won’t know until you try, and you really have no choice if your taking care of a family!  Make it easier on YOURSELF!  You deserve it!

JJ

Got Skin in the Game with Your Lupus?

Lupus can cause a dirty looking area on your skin from UV called Post-inflammatory Hyperpigmentation-this is mine.  I used to get horrible itchy rashes right in the same spot but this summer something different happened.  And it’s a melatonin reaction-…..who knew?

http://patient.info/doctor/post-inflammatory-hyperpigmentation-of-skin

image

Appearance
Hyperpigmentation occurs as brown macules or patches, often with a poorly defined border, irregular in outline and usually with little surface change.

The basic mechanism in response to various triggers (see ‘Causes’, below) is melanosis of the epidermal or dermal layer of the skin. A number of inflammatory mediators, including prostanoids, cytokines, chemokines as well as reactive oxygen species, are released during the inflammatory process in the epidermal layer. These stimulate melanocytes to increase the production of melanin. In dermal melanosis, inflammation disrupts the basal layer, causing melanin to be released and trapped in the macrophages of the papillary dermis – a process with the delightful name of pigmentary incontinence.

Pigmentary changes are much more common in darker-skinned individuals of Asian or African origin and pigmentation follows many common inflammatory diseases such as eczema, psoriasis or acne. Where erythema is seen in white individuals, pigmentation occurs in dark-skinned individuals.

Diagnosis
Pigmentation due to increased melanin is a dirty brown colour, as opposed to that due to haemosiderin pigmentation following purpura, which is more a rusty brown colour.

Hyperpigmentation on the face may be due to pregnancy or taking the contraceptive pill (melasma/chloasma).

Other conditions which may enter into the differential diagnosis include:

Acanthosis nigricans
Addison’s disease
Amyloidosis – lichen or macular
Tinea versicolor

Another good site on hyperpigmentation : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645767/