Inflammation: Why You STILL Have Low Thyroid Symptoms

I can truly appreciate this video of a doctor explaining how a patient with hypothyroid symptoms show normal lab results, stump doctors, and get passed around but never treated. This has happened to me! I, too, have inflammation, and everyone including the PCP, chiropractor, acupuncturist, endocrinologist, rheumatologist, and psychiatrist have all taken note of my edema, or swelling. My massage therapist ALWAYS says by body is inflamed. 

So, this doctor seems to understand the runaround that patients get, explains why we get the runaround, and offers advice about how to solve the inflammation "problem."  He has a series of YouTube videos. I'll make my way through them eventually. - Melissa

Hidden Cause #20 Why You STILL Have Low Thyroid Symptoms - Inflammation Blocks T3 Receptor

http://youtu.be/ljRWZ9gCxws

Life Lines: My Cushie Friends

In life's game of Who Wants to be a Healthy Patient, my phone-a-friend lifeline will be a Cushie friend over any endocrinologist, any day of the week and twice on Sunday.

We *are* so brave

From our friends over at www.Butyoudontlooksick.com.

Cushing's, Cortisol and Receptors

More research from the Dutch and Germans. I have no idea what this means! My Cushie brain can not piece together this new information. 

I have never heard the term "normocortisolism."

Preoperative Normalization of Cortisol Levels in Cushing's Disease After Medical Treatment: Consequences for Somatostatin and Dopamine Receptor Subtype Expression and In Vitro Response to Somatostatin Analogs and Dopamine Agonists

http://m.jcem.endojournals.org/content/98/12/E1880.abstract

Support your Loved One with Chronic Pain

Pete Beisner knows a lot about supporting a partner in chronic pain. Here, he shares insights on how to take care of the person you love. He authored this poignant and impressive read, entitled 23 Tips For Men on Supporting a Partner with Chronic Pain.

As a person who suffers from chronic pain, I am happy to know that a way to help has been so clearly defined. Some days, the pain is so bad, I just don't know how I can do it or what I need to make it go away. This list offers a sort of menu of options, things that someone can do without me having to tell them first.

Thank you, Pete and NAIDW for this wonderful article. ~ Melissa

Solu-Cortef on the Ambulances

Print this flyer and give to your EMS team

http://www.caresfoundation.org/productcart/pc/EMS/Flyer.pdf

Non-Green States => Preventable Deaths

Solu-Cortef Emergency Medical Response

CARES Foundation is another non-profit organization that is working to educate EMS professionals while getting Solu-Cortef on every ambulance. Their members face congenital adrenal hyperplasia and need the hydrocortisone dose via Solu-Cortef, too. They keep track of legislative status by state and advocates for us to make the change happen in our town and state. 

Take action! CARES Foundation tells us how.

We have a long way to go before these states are all green. So, let's all get started and help our friends. -M

Hey EMS Professionals: Study Up

Kudos to the Massachusetts Department of Public Health for developing and sharing this presentation.

"This presentation is intended for EMTs of all certification levels.  We recommend that you review the slides from start to finish, however hyperlinks are provided in the table of contents for fast reference. Certain slides have additional information in the ‘notes’ section. This presentation was created by MA EMS for Children using materials and intellectual content provided by sources and individuals cited in the “Resources” section. "

Southern Nevada Health District's Office of Emergency Medical Services 
& Trauma System gets it right.

Share this with your local EMS team.

RIP Sarah: Another Senseless Cushie Death

Sarah Thomas, 30, died six hours after EMS refused
to take her to the hospital oradminister her the life-saving Solu-Cortef injection.

Incompetent paramedics told dying woman:' You just have a tummy bug'


I send my most sincere condolences to Sarah's friends and family.

I am so rattled. This is unjust. It's so avoidable! 


A simple injection of Solu-Cortef could have saved Sarah. It costs less than $10. 

Taking Sarah to the hospital could have saved her. 

Something must be done to stop the medical profession's ignorance about adrenal insufficiency and cavalier know-it-all attitude.

We must be able to count on someone to help us.  How can we rest easy each day, wondering who will listen, who will believe us? 

Please support the group, Adrenal Insufficiency United, whose goals are to educate EMS personnel and ensure that Solu-Cortef is carried on every ambulance in the US.  Purchase one of their emergency kits and give a CD to the fire stations in your area. 

You will save others as you work to save yourself. - Melissa


*****************

Incompetent paramedics told dying woman: ' You just have a tummy bug'

Woman would have survived if she was taken to hospital and given a simple injection

By News agencies, published by the Telegraph

10:17AM GMT 20 Nov 2013

Two paramedics have been struck off for blundering over the tragic death of a dental nurse after telling her: "You just have a tummy bug."

Sarah Thomas, 30, died at home because her symptoms were not taken seriously by the two "incompetent" ambulancemen who refused to take her to hospital.

Paramedic David Glover told her she just had the stomach bug – even though she was barely conscious and struggling to breathe.

Ms Thomas would have survived if she was taken to hospital and given a simple injection. But she died six hours later.

A disciplinary hearing was told Glover and colleague Michael Davies then tried to cover up their mistake by fabricating her clinical record.

The pair were banned from working as paramedics by a disciplinary panel of the Health and Care Professions Council.

Panel chair Ian Crookall said: "The public would be appalled at the lack of competence.

"The facts of the case would undermine public confidence in the profession in the eyes of any member of the public who was aware of the circumstances.

"When there is a case of proven dishonesty it is necessary to uphold regulatory standards by demonstrating that such behaviour is not acceptable."

Sarah was visited at her home in Port Talbot, South Wales, by the two paramedics following a 999 call.

A Health and Care Professions Council hearing was told how Glover failed check her vital signs including pulse, breathing and blood oxygenation.

Ms Thomas had diabetes and her pituitary gland had been removed after surgery for a brain tumour. (Blogger note: Sarah had Cushing's and secondary adrenal insufficiency after pituitary surgery).

But the hearing in Cardiff was told that Glover failed to ask suitable questions about her medical history.

He told her: "You just have a stomach bug. You are better off here Sarah, this is the best place for you".

But Ms Thomas died just six hours later of adrenal insufficiency – when her body stopped producing the necessary steroid hormones. (Blogger emphasis).

Glover and Davies, who were working for the Welsh Ambulance Service NHS Trust, then "colluded to fabricate a patient record".

The pair added information they got later from another paramedic in an attempt to cover up their failures.

Mr Crookall added: "The panel was of the view that the established failure to conduct a proper assessment.

"The subsequent dishonest fabrication and collusion are very serious, representing a disregard for fundamental and core duties.

"It had the potential of causing very significant degree of harm – including death."

**************

I only have two words: NO SHIT (Blogger emphasis).

Management of Adrenal Insufficiency

You know how I feel like that Europe is publishing so much research about Cushing's and adrenal insufficiency. Here's an article posted in September 2013. 

THERAPY OF ENDOCRINE DISEASE: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe

READY FOR BLA: keychain case

My bilateral adrenalectomy is scheduled for Tuesday, December 17th. These pesky adrenals come out in two weeks. I look forward to the day.

I have a list of things to do a mile long that I plan to share with you. I'll feel better going into surgery knowing I have taken care of some details.

Today, I share this nifty keychain with pill container that I found for $1.99.  I bought it today, and there is plenty of room to store hydrocortisone. The description says the case can hold six pills, but I found it to hold much more.  I easily loaded 15 pills of 20 mg Cortef and 15 pills of 5 mg Cortef in the container.  That's nearly 400 mg of hydrocortisone with me at all times to cover me while I'm on the go. It is also BPA free and food grade plastic. I also like that the sliding button, shown in blue, keeps the container closed to prevent accidently opening.

One thing off the list. I'm off to a running start. ~M

Lori's Brainiversary

Lori is my good friend who underwent pituitary surgeries 4 and 5 last September 2012.

She is doing very well. Check out her video and see for yourself.

cushingsmoxie sent you a video: "CushieSteph Intro"

cushingsmoxie has shared a video with you on YouTube My friend Cushie Steph. Go Stephie go!! CushieSteph Intro by Cushie Steph My introductory video for the CushiesUnited channel. Come join us in our Cushie Crusade (http://www.youtube.com/user/cushiesunite) to educated people about Cushing's Syndrome and Cushing's Disease, a rare hormonal disorder in which your body produces too much of the stress hormone: cortisol. Please also check out my blog: http://cushiesteph.blogspot.com Help center • Email options • Report spam ©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Cushing's Disease & Acromegaly (brief story of my journey)"

cushingsmoxie has shared a video with you on YouTube From my sweet friend sweetsmilie1. Cushing's Disease & Acromegaly (brief story of my journey) by sweetsmile1 i didn't give much info in this video, but i primarily did it to get over my fear of talking about my illnesses so that i can one day spread awareness globally about my conditions in hopes of saving another precious life from being taken by either of these diseases. Help center • Email options • Report spam ©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Renée - Cushing's After a Failed Surgery"

cushingsmoxie has shared a video with you on YouTube My dear friend Renee shares her Cushing's story. Renée - Cushing's After a Failed Surgery by CushingsAdvocate After meeting with several endocrinologists and internists, Renée was finally diagnosed with Cushing's syndrome. Three months later she would have surgery, and would immediately know that it didn't work. She couldn't get out of bed and felt the same, if not worse than before undergoing surgery. Watch Renée tell her story about diagnosis and her unsuccessful surgery. Help center • Email options • Report spam ©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Melissa - Cushing's Symptoms & Diagnosis"

cushingsmoxie has shared a video with you on YouTube My dear friend "Melissa.' Melissa - Cushing's Symptoms & Diagnosis by CushingsAdvocate Following law school Melissa started to notice changes in her weight and was really exhausted all of the time. She met with her primary care physician, gynecologist, and an endocrinologist to discuss her symptoms and run some tests, but ultimately nothing was found. It wasn't until she did some of her own research that she stumbled upon something called Cushing's syndrome. Watch Melissa tell her story about the symptoms she experienced, and her struggles for a diagnosis. Help center • Email options • Report spam ©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cushingsmoxie sent you a video: "Phillip - Living with Cushing's Syndrome"

cushingsmoxie has shared a video with you on YouTube My dear fried Phil. Phillip - Living with Cushing's Syndrome by CushingsAdvocate Phillip's story is very similar to others that have been diagnosed with Cushing's syndrome. He had difficulty in getting diagnosed, and following surgery his symptoms slowly started to reappear. Watch Phillip describe how Cushing's syndrome has affected his life and the struggle of being re-diagnosed. Help center • Email options • Report spam ©2013 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

What We Know Just Changed: "Adrenal glands produce ACTH"

NOTE:  I wrote this blog entry after taking my sleeping pill for the night. I'll reread this in a few days and catch any errors. Right now, my eyes are blurry and my hands don't want to touch the correct keys. :)

What we know about Cushing's has just changed. I mean, for me, it has changed in a profound way, just in the reading of one press release online tonight.

I have seen many Cushing's patients go through one, two, or more pituitary surgeries once hypercortisolemia is detected.   Once doctors sheepishly diagnose patients with Cushing's, they shepherd us into pituitary surgery.  WHY?  

• The medical literature indicates that 70% of Cushing's cases are due to a pituitary tumor;
• Nodules rarely appear on the patient's CT scans of the adrenals that would suggest an adrenal source of Cushing's (syndrome);  
• These patients can have high ACTH (indicating pituitary source) or normal ACTH, so the likely surgical target is the pituitary;
• We patients seek a cure from this physical, emotional, and mental H- E- double hockey sticks, and we follow our doctors' advice;
  
• It's all we know about Cushing's at this time in history.

Despite all that, unfortunately, patients are often uncured by pituitary surgeries and choose the last resort treatment of bilateral adrenalectomy (BLA) to stop high cortisol at its source and gamble for an improved quality of life.  My minds often drifts back to an informal online survey of Cushing's patients who underwent BLA as treatment indicate that their adrenal glands were "plump" and "dense when removed."  Surgeons note this upon removing the adrenal glands and often include this information into the surgical reports, and pathology reports show that Cushie adrenals often weigh much more than the normal four to six grams each with fat dessicated. It is not uncommon for a patient's adrenal glands to weigh 10 and 15 grams each.  How? Why?  For those I've spoke with online, we don't know the answer.  I personally haven't seen anything written about the size of adrenal glands in relation to high cortisol and Cushing's. These dense behemoth little trouble makers trick us, because they don't appear larger on the CT scans. Radiologist love to say "adrenal glands normal in size" or they run them together with no special mention, such as "kidneys, adrenals, liver, and pancreas appear normal in size".  The surgeon sees the size of the adrenals first, kinda like finding out the gender and weight of new babies, except our surgeon removes adrenal twins, both weighing more than their mamas and papas could safely carry, so they had to come out. The size of the babies are often a surprise to everyone!

Oh, yeah. Back to the press release that says "Adrenal glands produce ACTH."

Today after our Thanksgiving dinner and celebration, I happily turned to my new iPhone 5s, another thing for which I am extremely grateful (as well as communicating with people from my bed while resting).  I stopped in my tracks when I read this press release from the New England Journal of Medicine regarding a genetic link to bilateral adrenal Cushing's.  I couldn't believe my eyes.  

A test? A genetic link?  So this would tell if we patients indeed had Cushing's, which endocrinologists are always insisting we don't really have, and they can screen our family members to get them the care they need more urgently?  WOW. This is good.

It was the first time I had ever seen the words "bilateral adrenal Cushing's."  I have seen Cushing's disease, typically referring to a pituitary source of high cortisol, and Cushing's syndrome, which refers to an adrenal source. What is this "bilateral adrenal Cushing's", asks the person about to undergo a bilateral adrenalectomy?

WHOA. Does this new article due out on Black Friday 2013 really say what I think it says in the press release?  

"The adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland." [blogger emphasis] 

Without reading the whole article, this sure sounds to me like these researchers in France might have determined that the adrenal glands produce ACTH, not just cortisol.  I wonder if the production mechanism is similar to an ectopic location such as the lungs or ovary? I can't tell what it means from the press release, which I have pasted below.  We may have to wait until Friday, after Thanksgiving, to see if the NEJM folks are really working or shopping.  

POST THAT ARTICLE!  This way more important than any deal on a waffle iron, a Monsters University DVD, or boots with fuzzy crap on the outside.

We, the Cushing's community, are waiting for the full article!!

*** PRESS RELEASE BELOW ***

Are you carrying adrenal Cushing's syndrome without knowing it?

Genetic research that will be published tomorrow in the New England Journal of Medicine suggests to

Dr. André Lacroix, professor at the University of Montreal, that clinicians' understanding and treatment of a form of Cushing's syndrome affecting both adrenal glands will be fundamentally changed, and that moreover, it might be appropriate to begin screening for the genetic mutations that cause this form of the disease.

"Screening family members of bilateral adrenal Cushing's syndrome patients with genetic mutations may identify affected silent carriers," Lacroix said in an editorial in the Journal. "The development of drugs that interrupt the defective genetic chemical link that causes the syndrome could, if confirmed to be effective in people, provide individualized specific therapies for hypercortisolism, eliminate the current practice of removing both adrenal glands, and possibly prevent disease progression in genetically affected family members."

Adrenal glands sit above the kidneys are mainly responsible for releasing cortisol, a stress hormone. Hypercortiolism means a high level of the adrenal hormone cortisol, which causes many symptoms including weight gain, high blood pressure, diabetes, osteoporosis, concentration deficit and increased cardiovascular deaths.

Cushing's syndrome can be caused by corticosteroid use (such as for asthma or arthritis), a tumor on the adrenal glands, or a pituitary gland that releases too much ACTH. The pituitary gland sits under the brain and releases various hormones that regulate our bodies' mechanisms.

Jérôme Bertherat is a researcher at Cochin Hospital in Paris. In the study he published today, he showed that 55% of Cushing's Syndrome patients with bilaterally very enlarged adrenal glands have mutations in a gene that predisposes to the development of adrenal tumours. This means that bilateral adrenal Cushing's is much more hereditary than previously thought. The new knowledge will also enable clinicians to undertake genetic screening. Hervé Lefebvre is a researcher at the University Hospital in Rouen, France. His research shows that the adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland. Hormone receptors are the chemical link that cause a cell to behave differently when a hormone is present. Several misplaced hormone receptors cause the ACTH to be produced in the enlarged benign adrenal tissue. Knowing this means that researchers might be able to develop drugs that interrupt the receptors for these hormones and possibly even prevent the benign tissue from developing in the first place.

More information: 

André Lacroix, M.D., Heredity and Cortisol Regulation in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013 

Estelle Louiset, Ph.D., Céline Duparc, Ph.D., Jacques Young, M.D., Ph.D., Sylvie Renouf, Ph.D., Milène Tetsi Nomigni, M.Sc., Isabelle Boutelet, Ph.D., Rossella Libé, M.D., Zakariae Bram, M.Sc., Lionel Groussin, M.D., Ph.D., Philippe Caron, M.D., Antoine Tabarin, M.D., Ph.D., Fabienne Grunenberger, M.D., SophieChristin-Maitre, M.D., Ph.D., Xavier Bertagna, M.D., Ph.D., Jean-Marc Kuhn, M.D., Youssef Anouar, Ph.D., Jérôme Bertherat, M.D., Ph.D., and Hervé Lefebvre, M.D., Ph.D., Intraadrenal Corticotropin in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013. 

Guillaume Assié, M.D., Ph.D., Rossella Libé, M.D., Stéphanie Espiard, M.D., Marthe Rizk-Rabin, Ph.D., Anne Guimier, M.D., Windy Luscap, M.Sc., Olivia Barreau, M.D., Lucile Lefèvre, M.Sc., Mathilde Sibony, M.D., Laurence Guignat, M.D., Stéphanie Rodriguez, M.Sc., Karine. "Are you carrying adrenal Cushing's syndrome without knowing it?." PHYSorg.com. 27 Nov 2013.

http://medicalxpress.com/news/2013-11-adrenal-cushing-syndrome.html

Perlemoine, B.S., Fernande René-Corail, B.S., Franck Letourneur, Ph.D., Bilal Trabulsi, M.D., Alix Poussier, M.D., Nathalie Chabbert-Buffet, M.D., Ph.D., Françoise Borson-Chazot, M.D., Ph.D., Lionel Groussin, M.D., Ph.D., Xavier Bertagna, M.D., Constantine A. Stratakis, M.D., Ph.D., Bruno Ragazzon Ph.D., and Jérôme Bertherat, M.D., Ph.D., ARMC5 Mutations in Macronodular Adrenal Hyperplasia with Cushing's Syndrome, New England Journal of Medicine 369;22, November 28, 2013

Provided by University of Montreal

This document is subject to copyright. Apart from any fair dealing for the purpose of private study, research, no part may be reproduced without the written permission. The content is provided for information purposes only.  [The blogger provides this information for information purpose only. The blogger generates no advertising income, and all articles are presented to educate the patient, family member, or friend who may be facing Cushing's.]

Bringing Back My Real Self With Hormones

This person's experience rebuilding her life after pituitary disease is very familiar.  It shouldn't be this difficult, should it?!

"And access to these medications should not be hindered. As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor's office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.

Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.

I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.

Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.

A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won't go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?"

http://www.nytimes.com/2013/11/24/opinion/sunday/bringing-back-my-real-self-with-hormones.html?_r=0

BLA stats: good news!

Surgical outcomes of laparoscopic adrenalectomy for patients with Cushing's and subclinical Cushing's syndrome: a single center experience

International Urology and Nephrology

December 2011, Volume 43, Issue 4, pp 975-981

• Minoru Miyazato, 
• Shigeto Ishidoya, 
• Fumitoshi Satoh, 
• Ryo Morimoto, 
• Yasuhiro Kaiho, 
• Shigeyuki Yamada, 
• Akihiro Ito, 
• Haruo Nakagawa, 
• Sadayoshi Ito, 
• Yoichi Arai

Abstract

Objective

We retrospectively examined the outcome of patients who underwent laparoscopic adrenalectomy for Cushing's/subclinical Cushing's syndrome in our single institute.

Patients and methods

Between 1994 and 2008, a total of 114 patients (29 males and 85 females, median age 54 years) with adrenal Cushing's/subclinical Cushing's syndrome were studied. We compared the outcome of patients who underwent laparoscopic adrenalectomy between intraperitoneal and retroperitoneal approaches. Surgical complications were graded according to the Clavien grading system. We also examined the long-term results of subclinical Cushing's syndrome after laparoscopic adrenalectomy.

Results

Laparoscopic surgical outcome did not differ significantly between patients with Cushing's syndrome and those with subclinical Cushing's syndrome. Patients who underwent laparoscopic intraperitoneal adrenalectomy had longer operative time than those who received retroperitoneal adrenalectomy (188.2 min vs. 160.9 min). However, operative blood loss and surgical complications were similar between both approaches. There were no complications of Clavien grade III or higher in either intraperitoneal or retroperitoneal approach. We confirmed the improvement of hypertension and glucose tolerance in patients with subclinical Cushing's syndrome after laparoscopic adrenalectomy. [blogger's emphasis]

Conclusions

Laparoscopic adrenalectomy for adrenal Cushing's/subclinical Cushing's syndrome is safe and feasible in either intraperitoneal or retroperitoneal approach. The use of the Clavien grading system for reporting complications in the laparoscopic adrenalectomy is encouraged for a valuable quality assessment.

http://link.springer.com/article/10.1007%2Fs11255-011-9950-9

Educating Loved Ones about Your Health During the Holidays | Psychology Today

Another wonderful article with actionable advice. Thanks, Toni.

http://m.psychologytoday.com/blog/turning-straw-gold/201212/educating-loved-ones-about-your-health-during-the-holidays

Find:       Therapists      Psychiatrists      Group Therapy      Treatment Centers       

TopicsHealth

Educating Loved Ones about Your Health During the Holidays

By Toni Bernhard, J.D. on December 13, 2012 - 8:42am

Chronic health problems pose a challenge to relationships any time of year. Most people don't understand the debilitating effects, physical and mental, of unrelenting pain and illness—unless they experience it themselves or are the caregiver for someone who is experiencing it. During the rest of the year, many of us have learned to limit interactions with others in order to manage our symptoms.

But when the holidays arrive, if we're not careful, we can find ourselves suddenly thrust into the middle of a lively and chaotic social scene where we're expected to participate in a range of activities, often for days on end. As a result, this time of year can be a recipe fordouble disaster—the increase in activity exacerbates our physical symptoms, while coping with sadness, frustration, and maybe even guilt about our physical limitations gives rise to emotional pain.

No wonder many of us with health problems dread the holiday season.

We can do a lot to minimize the negative effects of the holidays on our health by being sure that loved ones know about our limitations. If you're one of the many people with chronic health problems who don't look sick, the burden is on you tomake your condition "visible." If you don't take this pre-emptive action, people's expectations of you may be way out of line with what you can handle.

Here are some suggestions for helping loved ones understand what your life is like so that all of you can better enjoy this time of year:

In person, by phone or email, let loved ones know in advance what to expect from you during the holidays.

You might start by telling them that how you feel on any given day is unpredictable. Even if you rest for days in advance, you may feel sick or be in terrible pain on the actual day of a gathering. The unpredictability of chronic pain and illness is the single hardest concept for others to understand—that we can spend weeks in full "rest mode" before a big event, yet still be virtually non-functional when the day arrives.

I also suggest letting them know that, as much as you'd like to participate fully, you may have to skip some events or come late and leave early or excuse yourself at some point and go lie down. In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting that I might be doing so.

This happened to me this past Thanksgiving. I had to leave the table mid-meal because I was too sick and in too much pain to continue to sit up. But I felt okay about leaving without explaining myself (so I didn't interrupt the ongoing conversation), because I knew that my husband and my son and my daughter-in-law would know exactly what was going on with me. So, although there were others at the table who probably didn't know why I disappeared, the fact that I knew that these three people did know, gave me the courage to do what I had to do in order to take proper care of myself.

Enlist the help of an ally.

If you find it hard to explain to loved ones in advance about your limitations, think of whether you have a close friend or family member who understands what you're going through and ask that person to help you explain your condition to others. You could ask your ally to talk to loved ones on your behalf or to be present with you when you explain to them what to expect from you during the holidays.

Having a neutral third party involved like this can make a tremendous difference: it can magically turn your loved ones into good and sympathetic listeners.

If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you're wilting (as we call it in my household). It's so helpful for me to be "prompted" by my ally (my husband) because, when I start to overdo things, adrenaline kicks in which fools me into thinking I'm doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Think long and hard before you decide there's no such person in your life. Your ally may be a close friend or family member who's just waiting for you to enlist his or her help. That said, if you have no ally (I know that's the case for some), I can be your ally via this article: if you think it would be helpful, send the piece to those you wish would understand your circumstances better.

Recognize that some loved ones may never accept your limitations, and resolve not to let that cause you to doubt yourself.

Some family and close friends may never accept that you're disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability to accept how you are is about them, not you. Don't let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness and mortality, or they may be so caught up in struggles of their own that they're not able to see their way clear to empathize with you.

Just as we can't force people to love us, we can't force people to accept us as we are. I've found that getting angry at others when this happens just exacerbates my symptoms. The Buddha said that when we direct anger at another, it comes right back to us—like fine dust thrown against the wind. That's why it's important to protect ourselves by not letting others' lack of understanding upset us.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel misunderstood by family or close friends, here's what I do:

• First, I acknowledge that I feel hurt. Trying to pretend I'm not feeling the way I'm feeling only intensifies the emotional pain.
• Then I reflect on how there are many possible reasons for their behavior and how I need not take it personally.
• Next, I resolve not to let their treatment of me affect how I treat myself: regardless of what they think, I know I'm sick; self-care is my first priority.
• Finally, I work on genuinely wishing them well, despite their lack of understanding. A little bit of well-wishing can go a long way toward relieving my own emotional suffering.

My heartfelt wish is that your loved ones come to understand and accept your limitations, but that if they don't, you'll be able to accept them as they are without bitterness.

You might also like "When Poor Health and the Holidays Collide."

© 2012 Toni Bernhard www.tonibernhard.com

Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.

I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.