chronic pain Archives - Page 2 of 3

Another Nail: The Impact of Prescription Painkiller Abuse on Chronic Pain Sufferers

by RC

Published on February 26, 2014

2525 views

Bang, bang, BANG…do you hear that? That’s the sound of nails being hammered into a coffin. No, I’m not trying to be morbid, nor am I in the process of creating a funeral soundtrack. To explain to you what in the world I am talking about, please consider the following current news articles:

“Doctor Admits Drug Sales”
“Prescription Drug Dealer Allegedly Robbed Over $1 Million from New York City Pharmacy.”
“Doctor Pleads Guilty in Drug Trafficking Case”
“Sharp Rise in Women’s Death From Overdose of Painkillers”
“Fort Worth Officer Accused of DWI on Prescription Drugs Is Fired”
“Dentist Pleads Guilty In Prescription Drug Case”

Do you hear the banging now? Each one of these instances of painkiller drug misuse is another nail hammered into the coffin of necessary pain relief for those of us in true need.

Accusations of Addiction

The following is a scene that’s far more common that it should be. A women with endometriosis stumbles into the emergency room screaming in agony. Her endo has flared up and she is in excruciating pain. She waits miserably for at least an hour to be triaged by someone who knows nothing about endo. At triage she is asked what her issue is (as if they can’t tell she’s in excruciating pain!) Due to the fact that she is a confident, strong woman who knows her pain, she immediately advocates for herself: “I have endometriosis and I’m having a flare up. I’m in excruciating pain and I need pain medication!” At the mention of those two words, pain medication, silence abounds. Looks are exchanged between the triage nurses that plainly say ‘oh, she’s one of those’.

“Let’s see what he doctor has to say,” she is told condescendingly, and sent back to wait in agony until her name is called. At least an hour passes while she writhes in pain. After finally receiving a coveted bed in the emergency room and struggling to change into an unnecessary hospital gown she is seen by a resident and proceeds to tell him what is wrong. He tells her he has to discuss her situation with his attending and leaves her crying desperately for some pain relief.

Many minutes pass and he comes back with the verdict: “I’m going to tell the nurse to give you some (FILL IN ANY NON-NARCOTIC, UNHELPFUL PAIN MEDICATION).”

She begs, pleads, cries and screams, but he will not give her anything stronger and suggests she go home and see her own doctor. The nurse comes in with discharge papers and the woman is encouraged to sign them. Right before she does, she finds herself curious to see what they stated her problem was on the discharge papers. She glances at the papers and is shocked to see what is written: unspecified pelvic pain and drug seeking behavior. The poor woman goes home feeling completely dejected, mortified, and often ready to give up fighting.

An Unfortunate Situation

This horrendous occurrence is far too common for women with endometriosis. Too often we are labeled as ‘drug seeking’ or denied pain medication that we desperately need. But it is not only women with endometriosis who have chronic pain. And we are not the only ones being mistaken for drug addicts or drug seekers. There are far too many stories of people with invisible illnesses being accused of drug addiction when all they are trying to do is ease their pain.

Unfortunately, when we review the statistics on prescription painkiller abuse, it is quite understandable why we are accused of such. While about a third of all Americans (more than 116 million people) deal with some sort of chronic pain that might legitimately warrant prescription pain relief, the non-medical use of prescription pain relievers has been estimated at about 5 percent in people 12 years and older. From 1998 to 2008, the non-medical use of prescription painkillers increased 163 percent and between 1992 and 2003 there was a 90 percent increase in people who admitted abusing them. It is currently estimated that 2.4 million Americans abuse prescription drugs.

The FDA Fights Back

It is statistics like these that cause the FDA to create laws that severely restrict the use of prescription drugs. In October, the FDA recommended that tighter controls be placed on narcotics such as Vicodin, and that the drugs be changed to have a Schedule II classification. This would mean that doctors could no longer call in a prescription to the pharmacy for them or write a prescription for any supply over three months. Additionally, the FDA is recommending that label changes be put in effect for long-acting narcotics such as Oxycontin that describe the risks involved in taking the medication. While this recommendation does not directly restrict the usage of these medications, it is assumed that additional warning labels will create more hesitation on the part of the doctors prescribing them, making it more difficult for chronic pain patients.

What’s a Chronic Pain Patient to Do?

So I ask you, my friends: how are those of us who actually suffer from horrendous, excruciating pain supposed to receive the relief we deserve when others around us are abusing the medication that we need? How are we supposed to be helped if the FDA is forced to restrict prescription drug usage in order to prevent abuse? How do we prove that we are legitimate users, and not abusers? And lastly, how are we supposed to wean off of these medications if there is not enough research being done to discover the cause of our suffering and find better ways to improve our pain? It is a constant, cyclical problem that has one, enormous casualty: those of us who are really in pain.

Understanding FDA’s Views on Opioid Painkillers: The PROP Petition

by Philippa Bridge-Cook, PhD

Published on November 11, 2013

1908 views

For sufferers of chronic pain, the battle for appropriate medical pain relief has become more difficult in recent months. A controversial petition created by Physicians for Responsible Opioid Prescribing (PROP) called for changes to drug labels and prescribing practices for opioid based pain medications.

Briefly, the PROP petition called for three changes to the drug labels of opioid pain medications. For non-cancer pain, these medications are currently approved for “moderate to severe” pain, and the proposed changes would remove the word “moderate,” leaving the drugs indicated only for non-cancer pain that is severe. In addition, the petition calls for the addition of a daily limit of 100 mg of morphine or equivalent per day, and a maximum 90 day treatment period.

Just recently, the FDA responded to the PROP petition and has granted some of the requests in the petition and denied others. While some of the FDA response is good news for chronic pain patients, there is still significant cause for concern that labeling changes to opioid painkillers may affect the ability of patients with chronic pain to access these medications.

The FDA declined to add daily dose limits or maximum treatment periods to the labels of opioids, stating that the current scientific literature does not support such limitations. It is good that the FDA recognizes that there are no data to support arbitrary daily dose or treatment period limits. However, the FDA is recommending label changes for some types of opioid painkillers, in order to provide more information about the risks associated with use of these medications, and to better describe the population in whom these drugs should be used.

Label changes will be required for long-acting or extended-release opioid medications (eg. MS Contin, Oxycontin, Fentanyl), rather than for immediate-release opioids (eg. Vicodin, Dilaudid, Percocet). The reason the FDA is targeting extended-release/long-acting (ER/LA) products with the labeling changes is that FDA feels that the risk for abuse and misuse is greater with these products, and higher doses tend to be used, creating additional risk for a fatal overdose. The boxed warning section of the label is to be changed, to highlight the risk of misuse, abuse, neonatal opioid withdrawal syndrome, addiction, overdose, and death.

In terms of PROP’s request to limit the indication for these medications to “severe” pain only, the FDA requires the following new language in the drug label:

“[Tradename] is indicated for the management of pain severe enough to require daily, around-the-clock, long-term opioid treatment and for which alternative treatment options are inadequate.”

And, in the Limitations of Use section:

“Because of the risks of addiction, abuse, and misuse with opioids, even at recommended doses, and because of the greater risks of overdose and death with extended-release opioid formulations, reserve [Tradename] for use in patients for whom alternative treatment options (eg. non-opioid analgesics or immediate-release opioids) are ineffective, not tolerated, or would be otherwise inadequate to provide sufficient management of pain.”

These changes are cause for some concern, particularly because a judgement call will be required as to what exactly constitutes pain severe enough to require daily, around-the-clock treatment. And although physicians can and often do prescribe medications off-label, in the case of opioids, with the current regulatory environment, physicians may worry that off-label prescribing of opioids may be considered inappropriate, dangerous, and not the standard of care.

Then the question will become, who has pain severe enough to require daily opioid treatment? Many times patients with chronic pain conditions, especially women’s health conditions such as endometriosis that are misunderstood and often mismanaged, feel that their concerns about pain are not heard or taken seriously by their physicians. As an endometriosis patient myself, at times when I’ve been asked to rate my pain on a scale of 0 to 10, after giving my answer, I’ve been told that I must be wrong, and I’m not experiencing pain at the level that I say I am. I am concerned that it will be easy for physicians to tell patients that their pain is not severe enough to require daily opioid treatment based on what they believe to be true about the patient’s pain, rather than asking detailed questions about the disruption of daily life, and duration, quality and severity of pain, then listening to and believing the answers.

Pain is a difficult symptom to manage, especially when the condition from which the pain emanates is not fully understood, or in some cases, is not even recognized as real. Perhaps rather than investing time and capital resources into labeling changes of pain medications, physicians and patients would be better served if the FDA and other governmental agencies were to invest in understanding and developing treatments for the conditions that elicit chronic, untenable, pain.

Seeking the New Normal: A Letter to Those With Chronic Illness

by Nancy Petersen

Published on October 29, 2013

2556 views

This article was written for women trying to cope with endometriosis, but it applies to a much broader audience. Others have addressed the lack of understanding in chronic illness and one of the best is the website “But you don’t look sick” and The Spoon Theory written by the website owner, Christine Miserandino: ButYouDontLookSick.com: A community for support, education, and inspiration. Take a minute to read The Spoon Theory. It is helpful for family and friends trying to understand chronic illness and its very real impact on life and relationships.

Waiting for Normal to Return

Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking. You have been through hell pain-wise, often diagnostic-wise, and sometimes you did not get the help you needed. Life has changed because of these very traumatic and difficult episodes of pain and medical interventions. When dealing with chronic illness, nothing remains the same.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work through our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our “old self” and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.

The literature reflects the thinking of several experts in the grieving field, and I have one link posted here: The 5 Stages of Loss and Grief | Psych Central.

Chronic Illness Changes Us and Our Relationships

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life.

When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

My Story: The Way Around

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear that unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair, nor have any of the retirement about which I dreamed and planned. Actually, this was a very good lesson in: Life is what happens to you while you were making plans.

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it. I could barely even get up on the tractor when I first got it, I was in such bad shape. I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling through, which I could not do, I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

Create A New Normal

I hope I have at least given you the idea that if things don’t return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and may even require developing new tools or hobbies, or even a new life entirely. But, in time, you can do it. Let go of searching for the old normal and move on into a new way of being with whatever resources you have or can muster.

About the Author: Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.

She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.

She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.

She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.

PROP Painkiller Labeling Changes May Hurt Women with Chronic Pain

by Philippa Bridge-Cook, PhD

Published on August 19, 2013

2691 views

Many Americans with chronic pain conditions may not realize that their access to narcotic pain medication, which is already difficult and mired with barriers, may be about to decrease even more. An FDA advisory board is currently considering a petition to change the labeling on opioid pain relievers, which could affect the ability of millions of Americans with chronic pain conditions to continue using these drugs as they are being used today. The petition to the FDA, led by Physicians for Responsible Opioid Prescribing (PROP), calls for three changes to the drug labels of opioid pain medications. For non-cancer pain, these medications are currently approved for “moderate to severe” pain, and the proposed changes would remove the word “moderate,” leaving the drugs indicated only for non-cancer pain that is severe. In addition, the petition calls for the addition of a daily limit of 100 mg of morphine or equivalent per day, and a maximum 90 day treatment period.

What the Medical Societies Think

Several respected medical bodies, such as the American Medical Association (AMA), are against the PROP petition to the FDA. In a letter to the FDA opposing the petition, the AMA correctly points out that the PROP petition is not based on valid, scientific data from new studies, nor does it suggest proven therapies that can replace opioids in patient treatment when necessary. The American Academy of Pain Medicine stated in a letter to the FDA that the “rationale for the requested changes is seriously flawed, potentially harmful to patients with debilitating pain conditions for whom opioid therapy is indicated, and without substantive scientific foundation.”

Preventing Abuse

The proposed labeling changes are aimed at curbing a prescription painkiller abuse problem that has been increasing exponentially in the U.S. The issue of narcotic painkiller abuse/misuse has been in the news recently, with the Centers for Disease Control and Prevention (CDC) reporting in July that the number of women dying from prescription painkiller overdoses has increased by more than 400 percent since 1999. Although more men than women still die of prescription painkiller overdoses, the increase in women has been dramatic and highlights the growing problem with prescription painkiller abuse. Almost 48,000 women died from prescription painkiller overdose between 1999 and 2010, and 30 times that number went to the ER for issues related to painkiller abuse or misuse. Prescription painkillers now top heroin and cocaine as the number one cause of death from drug overdose, although many of these deaths involve additional drugs or alcohol.

The proposed changes to opioid painkiller labeling aims to address the problem of prescription painkiller abuse by limiting the number of prescriptions for these drugs. However, it is not clear that limiting prescriptions for these drugs would solve the problem of drug addiction, which is much more complex than just being about availability of prescriptions. For instance, research shows that 75 percent of people who abuse prescription painkillers have obtained drugs from family members, friends, or on the street, rather than having these painkillers prescribed to them. In addition, the risk of chronic pain patients developing addiction is relatively low, and addiction in this patient population is more common if other predisposing factors are also present (such as prior history of substance abuse, or mental health disorders). Prescription painkiller abuse is a problem that deserves to be addressed, but there is little evidence to suggest that the proposed opioid labeling changes will help this problem.

The Burden of Chronic Pain

On the other hand, the proposed changes will undoubtedly hurt the population of over 100 million Americans suffering from chronic pain. Chronic pain can result from many conditions, including headaches/migraines, low back pain, arthritis, cancer pain, fibromyalgia, pelvic pain, and neurogenic pain (pain resulting from damage to the peripheral nerves or central nervous system), and is generally defined as pain lasting longer than three to six months. Many chronic pain conditions are more likely to affect women than men. The burden of chronic pain, in terms of costs to the health care system, is huge: chronic pain costs up to 635 billion dollars per year in medical bills and lost productivity. However, the personal cost to the patient with chronic pain is immeasurable.

According to the World Health Organization (WHO), millions of people around the world suffer from under-treated pain. Patients with inadequately treated pain have an increased risk of suffering from depression and anxiety, and may experience many consequences of the pain such as decreased mobility, impaired sleep, immune impairment, loss of independence, and withdrawal from social interaction. Other than increasing the amount of suffering an individual has to endure, under-treatment of pain has other effects such as lost productivity and excessive health care costs. Patients with chronic, non-malignant pain are at the highest risk of having their pain inadequately managed. And it is those patients who would be most affected by the proposed changes to opioid labeling. Patients in both developed and developing countries have under-treated pain for multiple reasons including inaccessibility of opioids.

Women with Chronic Pain

Women may be particularly at risk for having their pain under-treated, even though women are more at risk for suffering with a chronic pain condition. Most medications, especially older medications (which includes narcotic painkillers), were only tested on male animals and human males. Therefore, how well they actually treat pain in women, and their possible adverse effects, are not well understood. Furthermore, the fact that the mechanisms behind these chronic pain conditions are not understood also makes them difficult to treat effectively.

Chronic Pain is Complicated

Chronic pain is a complicated problem that requires highly individualized multi-modal treatment. In addition to using appropriate medications at the right dosages, other methods to address pain can be helpful, such as surgery, physical therapy, psychological counseling, acupuncture, and meditation. There are only about 3000 to 4000 pain specialists across the U.S., leaving primary care doctors to treat pain, despite very little specific training. In addition, lack of reimbursement by insurance companies for complementary therapies can be an additional barrier to patients being able to fully treat their pain. Making opioid pain medications less accessible for chronic pain patients will only increase the number of barriers for these patients.

Will PROP Work?

The PROP petition aims to fix the prescription drug abuse problem by withholding medication from patients with chronic pain. The idea that having fewer drugs in circulation will solve the problem of prescription painkiller addiction is too simplistic, as drug addiction is a much more complex psychosocial problem. But worse, this petition will compound the already huge problem of chronic pain in the U.S., by limiting accessibility to a class of medications that many pain patients find helpful for their condition. I believe the FDA should reject the PROP petition in favor of other approaches that target the drug abuse problem directly, rather than causing a large group of patients to endure more suffering for the sake of unproven societal benefit.

To help stop the PROP petition to the FDA, sign the change.org petition at: http://www.change.org/petitions/please-help-to-stop-prop-s-petition.

Endometriosis and Adhesions

by Angela Wice

Published on July 24, 2013

5588 views

In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world. It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all. I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results. I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

Insensitive Remarks and Living with Chronic Pain

by R S

Published on July 11, 2013

3046 views

Women with chronic pain, whether it’s due to endometriosis, an undiagnosed cause, or an autoimmune disorder, have heard it all before. I’ve found that people, no matter how well-intentioned, tend to give bad advice or say slightly hurtful things simply because they don’t know what you’re dealing with. Here are a few remarks I’ve heard more often than I’d like:

Well, you don’t look sick! While that’s somewhat nice to hear (nobody really wants to look sick), it dismisses the level of discomfort the person you care about may be in. I may look fine, but there’s some suffering going on here, and it would be nice if you didn’t wave it away. I may look fine, but I’m not going to be running a marathon anytime soon, so please be supportive.

You’ve lost so much weight! You look great! I’m not going to address the myriad gender and body issues that factor into this remark, but if you know someone has been ill for a long time, don’t mention their weight loss. They probably didn’t lose it in a healthy way. One of my friends would frequently be approached with this comment, followed by, “You could be a model now! How did you do it?” and she would respond, “Severe pancreatitis.” Please don’t embarrass yourself or the individual in question; it’s not your concern. Trust me, if I lost this weight in Crossfit, you would know by now.

You just want attention. No, that’s what support groups are for. If I’m letting you know about my chronic pain, it’s to explain why I can’t move those boxes, or attend your birthday party, or why I may want to stay seated today. I feel that friends and coworkers should know what I’m going through so I don’t look lazy, or they don’t get overly concerned when I suddenly have trouble walking or standing.

Ooh, I’d love some time off work. This remark, when directed at your mention of sick leave, is a real doozy. Please don’t confuse time taken off work for illness as a vacation. Unless you’ve lost a job to prolonged illness, you probably don’t know the sadness and stress of wanting to work and not being well enough to do so. Also, some women struggle with taking long weekends for illness, worry about losing their jobs, and must hope their bosses are understanding of their condition. As for me, I did not just take a seven month vacation; there were no margaritas and laughs at the pool. There were lots of meals eaten in bed and lots of Netflix, but if you factor in the multiple diagnostic procedures, surgeries, medications with disgusting side effects, blood tests and constant pain, it wouldn’t be a vacation you’d want to take.

With a better attitude/better diet, you’d get better in no time! This, I think, can be chalked up to wishful thinking. It sure would be nice if being a vegan and reading a ton of Deepak Chopra would make the pain and fatigue magically vanish, but it’s not going to happen that way. You can be sure that if someone is dealing with chronic pain and fatigue, they’ve consulted specialists about the proper diet, maybe going through several different diets. If it’s been going on for months, you can be sure they’ve read about emotional coping mechanisms or started therapy to deal with the depression and anxiety that often go hand in hand with chronic pain. Trying to shame someone into acting like they’re fine is pretty horrible, if you think about it. Some days will be better than others, but people are allowed to be down in the dumps occasionally.

Just suck it up, you’re not dying. People may not believe you, but you already are doing your best. If it takes all your strength just to make a sandwich and take a shower, and you just did make a sandwich and take a shower, then you are indeed sucking it up. I think people, especially caretakers, get frustrated watching someone experienced prolonged pain or discomfort that they can do nothing to change. This frustration with the illness itself may get projected onto you. Remember: You didn’t ask to get sick, and it’s not your fault. If you’re a caretaker and you find yourself getting angry, take a break, go for a walk, get out of the house for a bit, maybe consider a support group. Chronic pain is hard on everybody, not just the patient.

You’d feel better if you got out of the house/ got out of bed/ went running more. Yes, I’m sure I would, but this completely ignores the fact that I’m experiencing pain and fatigue. All I talk about and fantasize about is doing just that: going about daily life in a normal, active way. Sadly, my body won’t allow this, and that’s why I’m mostly housebound and mostly bedridden. When I do push myself and go against my better judgment, I end up being half-dragged, half-carried out of the supermarket to the car. Or, even worse, I faint in public, and it’s very humiliating. Don’t push someone to spend more energy than they have or ignore their pain; it will end in tears.

If people are less than supportive, you can suggest more helpful things to say. It takes guts, but you could say: “I’m letting you know that I’m in pain so you understand why I’m moving slowly today.” For friends or a partner: “I’m not feeling very well, and I’d like some support. Maybe we could plan an activity to do together when I’m feeling a bit better.”

I’ve learned that some people become downright hostile when confronted with spending time around someone who is in a lot of pain. Feel free to cut these people out of your life; they are afraid of illness because they fear experiencing it themselves and aren’t good at practicing empathy. Others don’t understand illness because they haven’t had friends or family live through it, and while they may be trying to help, they say insensitive things. Try not to let it get you down!

Menopause, Migraines and My Empty Nest

by Nancy Bonk

Published on April 10, 2013

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While growing up three things I never thought about were migraines, menopause and having an ’empty nest.’ What I did think about were the clothes I wore to school, whether or not I had the “in” purse, how not to get my period in school and how my hair looked. When I had a migraine it was around my period and I was able to tend to it with over-the- counter medications. As I got older, my thoughts turned to my education and career goals. At some point I assumed I would get married, but only after I was set in my career. Nowhere in my ‘plan’ were children included – I just wasn’t going to have any. After high school I went to college to pursue a degree in music education. But as I’ve come to find out, life rarely goes according to any plans I’ve set.

In the middle of my sophomore in college as a music education major, I discovered I didn’t have the patience to teach music to a classroom full of squiggly little children. This confirmed my feelings that motherhood wasn’t for me. My new major in music business would be a great start in become a manager of an orchestra, or at least that was the plan. My college internship at ICM Artists (now Opus 3 Artists) in New York City was an amazing experience and my plan was set in action. But somewhere along the line I met Michael and my world turned upside down. We fell in love, graduated from college and got married. After my internship I came right home and got married – what was I thinking?

Anyways, as we settled into our lives and careers life was very good. Michael was a math teacher and I was in music administration. Suddenly after four years of marriage, my biological clock starting ticking and I wanted a baby. Soon after our beautiful daughter Sarah was born and motherhood became my new career path and passion – I was now a stay-at-home-mom. Five and a half years later, our wonderful son Samuel was came along and our nest was complete and together we raised our two gems. Motherhood and migraines seemed to be manageable during this time.

But once again, my life abruptly changed when I sustained a traumatic brain injury or TBI. You can read more about my history here. Somehow my family muddled through the chronic pain I battled and still do but no without the support of a husband. It was too much for him, so after nearly 25 years of marriage my role as a wife was over. Two things that remained constant in my life were migraines (which increased dramatically since I fell) and motherhood.

Motherhood is something I took (and still do) very seriously and went about in a “traditional” manner. My job was not to be best friends with my children, rather their mother who went about setting limits and boundaries with patience and love – most of the time. My children often heard “I’m not interested in what Bobby and the rest of your friends are doing, YOU aren’t allowed to do that.” Difficult decisions were made on a daily basis they didn’t like. For example, no PG-14 rated movies until they turned 14; no sleep over’s unless I’d already been to the house and knew the parents; shorter curfews compared to their friends, you get the picture – I was pretty strict. When my 18-year-old comes home at his assigned curfew I always get a good night kiss no matter what time it is. This way I can “see” and “smell” any signs if he has made any poor choices. So far, so good.

But the thing is Sam graduates from high school this June and is off to college in the fall. Even in chronic pain, motherhood has always been my primary function. I felt it’s important to raise children who would become respectful, independent, loyal, compassionate and loving adults, which they both are. When Sam leaves for college this fall, is my role of mother finished? I feel like I’ve been working on a ‘project’ for 23 years and its coming to an end. It feels like I’m about to make the final presentation for this project, and then, it’s over. Is this what an ’empty nest’ feels like? A glorious ‘project’ that is done? Within the last three years my role as a mother and a wife feel like they have been ripped from me. I’m thrilled that my children have made it through and turned out “OK” after surviving a crummy divorce and elated they are both starting new chapters in their lives. But this emptiness I am starting to feel is totally unexpected.

So here’s the thing – how do I fill my nest and figure out who am I now? Where to start -how does a disabled woman in chronic pain redefine themselves after being a stay-at-home-mom for 23 years? There are plenty of mothers who go back to school and find a new full time career or go back into the career they had before they became mother, but that’s not me. Battling chronic pain each day and taking it one day at a time may be the path to stay on for the moment. Because other than that, I really have no clue where to go from here.

A New March Madness – Endometriosis Awareness Month

by Jordan Davidson

Published on March 4, 2013

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This March I am celebrating a different kind of madness. It has nothing to do with college basketball; nor is it related to four leaf clovers, egg shaped candy or seder plates. No, this March is for reproductive health education and raising awareness about endometriosis. There is nothing nice about endometriosis, even the word is cumbersome to say. This March, we need to talk about endometriosis and reproductive health and we are going to talk about it; because the state of reproductive care surrounding endometriosis is not OK and it’s not going to get better until more people know about endometriosis and the facts surrounding it.

It is estimated that 1 out of every 10 women has endometriosis. Endometriosis is a secondary autoimmune disease that occurs when the endometrium (the lining of the uterus) grows outside of the uterus. Common places for this tissue growth is outside of the uterus, on the fallopian tubes, ovaries, bladder, within the pelvic cavity, on the pelvic floor, and on the bowels. In extremely rare cases endometriosis can be found growing up towards and on the liver, lungs, brain and on the central nervous system. These growths respond to the menstrual cycle the same way that the lining of the uterus does. Each month, the lining builds up, breaks down and then sheds (aka ‘your period’).

When a woman gets her period the broken down lining exits the body as menstrual blood through the vagina. When a woman has endometriosis, the tissue and blood from the endometrial growths found outside of the uterus have no way of leaving the body. This results in internal bleeding and inflammation; both of which can cause chronic pain, infertility, scar tissue formation, adhesions and bladder and bowel complications. Women with endometriosis also suffer from higher rates of allergies, yeast infections, asthma, chronic fatigue, fibromyalgia, other autoimmune diseases (such as hypothyroidism and lupus and others) and increased rates of ovarian cancer, non-Hodgkin’s lymphoma and brain cancer.

There is no cure for endometriosis and treatments leave a lot to be desired. Common treatments include oral contraceptives, GnRH agonists, progesterone therapies, surgery and hysterectomy. Since endometriosis usually appears during the reproductive years, hysterectomy is not a welcomed option and yet is commonly prescribed. Surgery does not cure endometriosis, in many cases the growths reappear within five years. Hysterectomy does not cure endometriosis, with 40% of women see a reoccurrence of their symptoms. There is no cure for endometriosis.

This March we need to raise awareness. It’s not a comfortable topic but that is no reason for millions of women to suffer in silence with no known cure. The discomfort society feels in talking openly about menstruation or uteri or vaginas is no reason to deny any woman the right to proper reproductive care. 1 in 10 women have endometriosis. These women are your friends, neighbors, sisters, co-workers, lovers, girlfriends, cousins, aunts, nieces, mothers, and fellow humans. It takes an average of 7 years to get a proper diagnosis and even longer to find an effective treatment plan (if any). This is about proper reproductive care, about millions of women who are embarrassed to talk about painful periods, about millions of women who suffer in silence. It needs to stop.

This is not a call to arms but a call to uterus(es). This month lets promote reproductive care and raise awareness for endometriosis. Ask me about my uterus, ask those you care about, about their uterus. Yes, it sounds strange, but how else are we to start the discussion and break the stigma against talking about reproductive illness; especially if we can’t even say uterus or vagina without snickering or feeling as embarrassed as a third grader would. Please help us raise awareness this March; share this article, share your story, start a conversation, ask a loved one about their uterus and break the silence!

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