chronic illness Archives - Page 2 of 3

Becoming the Person I Hoped I Was

Published on September 21, 2017

3931 views

When life changes its mind about the size of the mountain you’re climbing, you will suddenly find that you have some decisions to make. My husband got sick. He was hit, badly, with long term side effects stemming from a short course of Ciprofloxacin (Cipro), a fluoroquinolone antibiotic. The side effects from Cipro can be a horrific and long term, but are often invisible. Blood tests come back normal, neurological exams reveal nothing of note, the sufferer often looks fine, and worst of all, most doctors are completely unfamiliar with these adverse reactions. This of course means that most people are completely unfamiliar. We certainly were. But without a doubt my husband was sick, and I had some decisions to make. The biggest decision I at first didn’t know I was making (daily, even minute by minute) continues to be this: what kind of person am I going to be?

I have unknowingly been faced with this decision before. Two years ago, James, the husband of a coworker got sick. Really sick. He had stage four esophageal cancer, and it was very unlikely that he would survive long after the “last hope” surgery. His wife was not in a position to stay home and take care of him and she had to continue working full time. They also had two elementary age girls. Not much could be worse.

After his surgery, James had trouble getting enough calories. I like to bake so I made him some cookies, and a couple of chocolate cakes. Actually, what I really did was make cookies and cakes for my future husband and for parties, but I made sure to double the batches so I could give some to James. This was the extent of my support. James and his wife expressed their gratitude far beyond the reality of the gesture. This attention embarrassed me a little, but mostly made me feel rather pleased with myself. Yes! I am one of those people who bake when my acquaintances are ill! What an amazing, empathetic, wonderful person I am. I did not go so far as to credit myself with James’s survival and subsequent return to health, but I allowed for how the chocolate probably helped.

I had made the decision to act on my compassion. A little. Well, not so very much actually. Almost literally the crumbs from my kitchen. Yet I now understand the level of gratitude around a few cookies. Today similar small gestures from the people around me stun me with appreciation of my own. I understand it now. My friend makes enough extra soup so that I can have lunch for three days. My coworker orders the annual holiday craft for my students without bothering me with the details. Another friend texts to see if I need anything at Trader Joes. “I’m going later, what can I get you?” These moments stick.

Cipro toxicity isn’t like cancer. It isn’t something that people already understand to be a struggle. Like many chronic conditions, it can become invisible to those not suffering. It is easy to ignore something (or someone) who disappears from daily life, without any official medical diagnosis. So easy in fact that this is many people’s natural inclination. To ignore or minimize. This was my inclination.

On the best days the gratitude I now feel for small acts of kindness can seem a fair trade for the unawareness that formerly accompanied our good health. The rarity of these acts makes them more powerful. Many people who know our story ask my husband how he is, but more often people don’t. Ever. I suspect these people do care (or at least I am deciding to believe they do). So what is the disconnect?

From my own experience, reaching out to help anyone in need takes an ability to look beyond, briefly, the ever present squawk from the needs of your own life. That was me. Since my husband has been sick I have heard from many people about their own struggles. How did I not notice my sister has been fighting through horrible digestive issues? How did I miss my friend having constant headaches for four months (after taking Cipro, by the way!)? How did I miss my coworker’s father passing away?

When I did used to look beyond my life, I would often be immobilized by anxiety. There is a real courage involved in moving past the fear and discomfort of saying something wrong. In the past I lacked that courage. I justified with thoughts that generally began, “I don’t want to remind her of….” Really? Did I think there was a moment that she had forgotten that her father had died, her husband had cancer, her head was pounding, whatever? No. It may hide for a moment but she always knows it’s there. What she does not know is that I remembered it’s there. And that I cared. It is the rare person who can push past these obstacles and offer something anyway. It is the rare moment when they do.

I am also grateful because I believe acts of compassion, small as they may be, give me a glimpse into the very best selves of those around me. My father and sister could not be more supportive. My aunt has been lovely. Our closest friends have rallied throughout. Although I already knew this information about my family, many of the friends I have chosen in my life are turning out to have a depth to them that has not been apparent to me before. Perhaps this was always true and I just never had occasion to see it. Or perhaps this is something that my friends are deciding about themselves, in the same way that I am deciding about myself. Maybe with every decision we make there is an associated change in ourselves. I don’t know. I do know that the way this has deepened my feelings for these people is as if, from the mountain, I thought I was looking at the edge of a lake in the distance. But now after climbing a little higher, it turns out it is the beach of an ocean. What a dazzling view.

Since my husband’s illness began 6 months ago, every person in my life has been presenting me with an unintended gift the moment I started paying attention. The gift of example. Everyone has and is modeling the kind of person I want (and don’t want) to be. Who do I want to be when the people around me are in need? Do I want to be the person who texts from the grocery store? The person who takes over chores without being asked? Or the person who is so unsure of what to say that she says nothing at all? (How many times have I been that person? Too many to count.) It’s an obvious decision once you’re aware of it. It’s a choice that I did not even know I was making before this experience. Non-action is a decision. Generally it’s the worst decision.

I have come to believe more and more that it is our actions that define us, not our thoughts, our intentions, or even our feelings. Still, I wish I could go back in time two years and smack the feelings right out of myself. The silent self-satisfaction over a chocolate cake… how very shameful. There is no way to go back and offer to babysit, or cook a meal, or shop, or just ask (frequently) how things are going, and what can I do for you today to help? Or better, just do something that needs to be done, without asking. I can’t go backward and do that. Most disgraceful for me is that cancer is a very “visible” disease and I did my best to not see it. There is only one way to atone. Open my eyes for the rest of my life, and act on what I see, and even what cannot be seen. It is not a coincidence that every time I see James, he asks if there is anything he can do for us. My husband is sick and I am here now. Life is full of decisions. Today I am deciding to be grateful for the chance to have a do over. From now on I get to decide to be the kind of person I always hoped I was.

What Can I Do To Help?

Hormones Matter is unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research, and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. And perhaps most importantly, contribute.

To support Hormones Matter and our research projects – Crowdfund Us.

Image credit: Peakpx

License to use Creative Commons Zero – CC0

This post was originally published in December of 2013.

Coming Out of the Disease Closet – The Challenges of Chronic Illness

by Jordan Davidson

Published on August 4, 2015

4194 views

“When do you come out of the closet?”

“What?!” I replied, half choking on my coffee.

This question came as my friend, a fellow chronic disease sister, and I were getting coffee and discussing the usual thing topics girls in their twenties discuss, work, friends, boys, relationships, boys, world news, boys, you know the usual.

She clarified; “Say you are dating someone, when do you tell them that you are sick… You know, come out of the ‘disease closet’?”

I took a moment to reflect because it was a good question; oddly worded but nonetheless a good, thought-provoking question.

I thought back to the first time I came out of the disease closet. It was after a few weeks of dating this guy I really liked, who was a bit older than me. I was having surgery in a month and I knew I needed to talk about the surgery before it happened (so it wouldn’t seem suspicious if I wasn’t up to going out for two weeks or so). I very hesitantly told him a brief version of my medical history and the impending surgery. He took a few minutes to pause and then finally after what felt like forever he said “So you can’t have kids.” I was 18 at the time and so my response was “I don’t know I haven’t really tried, have you? I mean who really knows if they can have kids unless they’ve tried.” He followed up with the standard ‘you’re a very brave girl’ spiel and that was the end of that. I think we had one or two more dates after that and then two weeks before my surgery he stopped returning my texts and calls. No explanation, nothing, that was that.

I had (or at least I thought I had) learned a lot from that experience; with the main takeaway being ‘my private matters are best kept private.’ I am 21 now and I have been dealing with health issues from the day I was born. I’m not looking for praise or an award, I just want to live a normal life. I graduated high school with honors, I graduated from college in three years and have found a lot of success in the working world. If I never told you I was sick, you would never know that I have stage IV endometriosis with endometrial lesions growing all the way up towards my liver and covering almost the entirety of my reproductive system, causing me crippling pain at least once a month.

When I am in pain you would never know it. Despite being in pain, I will still meet you for coffee. I will still go to class or to work or meet with a client and there will be a smile on my face, because I just want to be normal. I don’t want to have to come out of the closet because someone somewhere decided being ill is shameful. I have nothing to hide. I have stage IV endometriosis, thyroid disease, chronic migraines, weird allergies and narrow angle glaucoma and I’d wear it all on my shirt if I didn’t think that people would judge me as being ‘lesser.’ I wouldn’t be stuck in some ‘disease closet’ if I thought that I could tell people these things without having them give me ‘sad’ eyes or tell me (or not tell me) they don’t want to date me anymore because I have ‘too many problems.’

But I can’t say all of these things openly because there is a stigma attached to people with chronic diseases; those who are disabled, those who fight their bodies on a daily basis. I don’t get to talk about these experiences, the countless hospital visits, the fifteen surgeries that have made me a stronger, better person because I am stuck in this ‘disease closet;’ because to be ‘ill’ is to be abnormal and we are taught to be ashamed of abnormality.

Its not easy but we all need to stop hiding. No one is ‘lesser’ for being different and no one should be made to feel that way. By hiding, we convey that we have something worthy of hiding, something that we should be ashamed of. I’m not saying to go to the next person you meet and say “Hi I am so and so and I have such and such” because that’s just a different way of defining yourself by your illness. Instead, you should be able to talk candidly about what ever adversities have been thrown your way without feeling ashamed. Through openness we teach acceptance of ourselves and of others. I apologize if that sounds like it came out of a fortune cookie – but its true! I’ve learned that the problem wasn’t coming out of the ‘disease closet’ to others, the problem was I hadn’t ‘come out’ to myself.

If you would like to share your story regarding your personal experiences dealing a chronic illness or telling others about your health issues, feel free to do so in the comment section below. Or write a blog for Hormones Matter. If more women would come out of the disease closet maybe we can begin the long journey of curing some of these often invisible illnesses. Come out of the disease closet.

This post was published previously in February 2013.

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

by RC

Published on February 26, 2014

2510 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.

How I Lost my Faith in Scientists

by Lisa Bloomquist

Published on December 30, 2013

3347 views

Lisa Bloomquist flouroquinolone antibiotics

On December 21, 2013, The Huffington Post published an article entitled “Americans Have Little Faith in Scientists, Science Journalists: Poll.” The article noted that, according to a HuffPost/YouGov poll, “only 36 percent of Americans reported having ‘a lot’ of trust that information they get from scientists is accurate and reliable. Fifty-one percent said they trust that information only a little, and another 6 percent said they don’t trust it at all.”

People trust science journalists even less, with only “12 percent of respondents said (saying) that they had a lot of trust in journalists to get the facts right in their stories about scientific studies.”

I was raised by an engineer with a science background. I don’t have any religious beliefs that keep me from believing what scientists say about human or earth history. My political and ideological beliefs don’t conflict with those of scientists, generally. I believe that science is the best method of seeking the truth that humans have found thus far. I believe in the efficacy of the scientific method.

But I am one of the people in the 51 percent who only trust the information provided by scientists “a little” and one of the 88 percent who doesn’t trust science journalists to get the facts right. I haven’t fully lost my faith that scientists will eventually get to the right answers, but I have lost my trust that they are on the right path. Here are a few reasons why:

I know more about my mysterious condition than they do. I had an adverse reaction to Cipro, a fluoroquinolone antibiotic, and that triggered Fluoroquinolone Toxicity Syndrome – a syndrome that is more similar to an autoimmune disease than an allergic reaction to a drug. There are hundreds of reputable, peer-reviewed journal articles about the effects of fluoroquinolones on human cells. I am thankful for those articles (and the scientists that did the research and wrote the articles), as they have given me much of the information that I have. But there is no consensus among research scientists about how fluoroquinolones affect humans, or even human cells. Fluoroquinolones are chemical creations of humans. Their effects on human cells should be testable, verifiable and known (they have been on the market for more than 30 years), but they’re not. The effects of fluoroquinolones on human cells are complex and multifaceted. But there are causes and effects and truths to be found, yet victims of these drugs are left to do the research about how these drugs work and put together the pieces as to why they are ill, because the experts, the scientists and researchers, aren’t. This isn’t okay.
Rise in chronic mysterious illness. People are sick with “diseases of modernity.” Doctors and scientists don’t seem to have any answers as to what diseases like fibromyalgia, chronic fatigue syndrome, adverse reactions to drugs (including vaccines), autoimmune diseases, allergies, and others are caused by, or how to fix them. When you, or a family member, become ill, and there is nothing that your doctor can do to help you, yet your pain and suffering are definitely real; the natural and reasonable tendency is to lose trust in those who are failing to give you answers. We expect answers to medical, biological, and chemical problems from doctors and scientists, and when they fail to give us those answers, we lose faith in them.
Publication bias. Publication bias is “the practice of selectively publishing (drug) trial results that serve an agenda.” It’s an ethically disgusting practice and most scientists agree that it should be eliminated, somehow. Yet it continues. The Huffington Post article noted that many people distrusted scientists and science journalists because they believed that the scientist’s findings were influenced by political ideology or the influence of the companies sponsoring them. No system has yet been put into place to minimize or eliminate bias.
Scientists aren’t seeing the big picture. There is a struggle between specialization and detail, and the so-called “big picture.” Journal articles will point out details of a problem, then fail to link those details to the big picture. For example, there are journal articles that note that fluoroquinolones deplete mitochondrial DNA. What that means for human health and how that affects the person who takes those drugs, is not noted.
Scientists aren’t taking a stand. There are journal articles about the disastrous effects of some drugs on human health, but there seems to be little screaming about the limiting of the use of those drugs based on the findings. Rather, the warning label is simply updated, and people continue to be hurt, when their pain, suffering and death could have been prevented.
Nonsense explanations. In an article in The Atlantic entitled “Living Sick and Dying Young in Rich America” about how an increasing number of young people are coming down with chronic illnesses, especially autoimmune diseases, the explanations put forth by the doctors and scientists interviewed as to why young people are sick with autoimmune diseases bordered on ridiculous. Junk food and a lack of exercise were asserted to be the main culprits. Junk food and lack of exercise will certainly make a person fat and they may cause some chronic illnesses like obesity and diabetes, but they aren’t likely to trigger an over-expression or over-stimulation of immune system cells (unless the junk food is made from GMOs and immune-system altering chemicals, in which case it’s possible), which is what causes autoimmune diseases. Perhaps pharmaceuticals that have been shown to stimulate immune system cells should be looked at as a culprit, instead of the victim’s diet and exercise habits.
Faith-based assertions. Almost every journal article I read about the safety of the drugs that hurt me, fluorouquinolones, has a faith-based, incorrect statement that they are “generally regarded as safe.” Many of the articles then go on to note deleterious effects of fluoroquinolones on human cells, but those truthful findings don’t seem to inspire revision of the presumptive statement that they are “safe.”
Faith-based following. To be accused of being anti-science is a huge insult. If you question the safety of a drug or vaccine you risk being accused of being anti-science, and the assumption is that you must be irrational, dangerous, or opposed to the progress that has been made with other pharmaceuticals or vaccines. The demonizing of those who question scientists is, ironically, anti-science, as science is built on questioning assumptions and faith-based beliefs.
Conflicting results. When questions are asked that should have a yes or no answer, and those questions can be verified in a laboratory setting, different groups of scientists should be able to get consistent results. Replicability is a tenet of science. Yet there are conflicting results to many important, answerable questions throughout scientific journals. It’s frustrating and it decreases the credibility of scientists that questions that should be answerable aren’t being answered.
Changing stories. Is butter good for us or bad for us? How about coffee? How about fluoride? What about statins? The story changes constantly. This destroys the credibility of the people telling the story – doctors, scientists, nutritionists, and others.
Disbelief of patient reports. If one patient comes forward asserting that a pharmaceutical or vaccine hurt him in an unusual way, it is reasonable to think that the patient might be mistaken, that there might be another explanation for his pain. However, if hundreds or thousands of patients come forward with the same, or similar stories, their assertions should be listened to. Unfortunately, their stories are being systematically disregarded and denied by doctors and scientists alike. Hurt patients have no reason to lie, they have no conflicts of interest (generally), so they should be listened to and believed. In systematically ignoring them and their pain, doctors and scientists are being callous and un-curious, and they are losing credibility.
Not asking the right questions. Mitochondrial dysfunction is related to many diseases including, “schizophrenia, bipolar disease, dementia, Alzheimer’s disease, epilepsy, migraine headaches, strokes, neuropathic pain, Parkinson’s disease, ataxia, transient ischemic attack, cardiomyopathy, coronary artery disease, chronic fatigue syndrome, fibromyalgia, retinitis pigmentosa, diabetes, hepatitis C, and primary biliary cirrhosis” (source) and others. Many pharmaceuticals, including statin drugs, synthetic antibiotics, antidepressants and others, adversely affect mitochondria. Yet the affects of drugs on mitochondria are not systematically examined before drugs are put onto the market. If mitochondria are not being looked at, the right questions are not being asked, and if they’re not asked, they won’t be answered. We count on scientists to ask the right questions. When they don’t, they lose credibility.

The list above saddens me. If I can’t trust scientists to give me answers, who can I trust? Is there an alternative? I’m not the type to start an alternate belief system, and I truly do believe that the scientific method is the best way of finding truth that we have. But scientists are failing to find the answers as to why, for example, an increasing number of young people are suffering from chronic autoimmune ailments than at earlier times, or appalling autism rates keep getting worse and worse, and people are suffering because of the lack of answers provided. So I have lost trust in them. Sadly, I have more trust in personal reports (which are, of course, anecdotal) that I read on the internet than I do in scientific studies. At least I know that the people screaming about their pain, their struggles, their need for answers, etc. aren’t subject to publication bias with their screams.

The only way to find answers to chemical, biological and medical problems is through science. Scientists must be the ones to step up to do the science. They must be the people to find the answers. Substantive, reliable, replicable, truthful information cannot be gained without them and their methods. We are at their mercy in finding answers to many of life’s problems, especially those having to do with human health. I trust that some brave scientists will step up to rectify some of the criticisms that I listed above. I certainly hope so.

I don’t expect scientists to be perfect. I don’t expect them to have all the answers. I don’t expect them to be infallible. But I do expect them to be curious, humble, truth-seekers who minimize bias and conflicts of interest to the best of their abilities. I expect them to be ethical and moral. I expect them to take responsibility for the bad that comes along with the good of their creations. I expect them to be prudent and careful when dealing with chemicals that can mess things (human bodies and the environment) up in ways that can’t be fixed. I expect them to be honest. I expect them to be outraged. I expect them to be curious. I expect them to seek answers to the real problems and dilemmas that people face. Perhaps I’m naïve. Perhaps I’m expecting too much from my fellow humans who happen to have the title of Scientist. Perhaps I’m not being fair. I apologize if that is the case. We are all just people trying to do the best we can to make the world a better place. I just wish that I was still sure that, collectively, scientists were making progress toward making the world a better, not worse, place. Until I gain some reassurance, consider me one of the doubtful and untrusting. I am truly, deeply saddened by this.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

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

by Nancy Petersen

Published on October 29, 2013

2550 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.

176 Million Reasons

by Lisa Graham

Published on July 26, 2013

2128 views

I have a disease which cannot be described-
Its symptoms vary and its cause is unknown;
Doctors routinely mistreat it to the dismay
Of 176 million women worldwide.

As women we are captive to this farce.
The promised cure an enigma, a cruel mirage.
Young girls not yet women left hollow,
Emptied of their organs, told to smile wider.

We find that diagnosis leads merely
To more confusion. There is no
Medical consensus. We are sheep,
Dosed and herded, penned together.

We are the women that doctors fear,
we stumble in crying, we live with pain.
Nobody wants us to say what we need.
The stigma is worse than the disease.

Lisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide. She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables. She is currently pursuing a Master’s Degree in Project Management.

Physical Pain and Depression

by R S

Published on June 21, 2013

3437 views

Physical pain and depression go hand in hand. I’m not looking at any studies when I write this; I’m speaking from experience.

I spent three months between 4 and 9 on the pain scale. When palpated or touched anywhere below my ribs, I would involuntarily shriek and tear up. In pictures taken during that time, my skin was greyish and covered in a sheen of sweat. I was losing ten pounds a month. Specialists and primary care doctors would frequently say, “You shouldn’t be in this much pain. Your pain level is rather high,” and I would have no explanation for them. “I am in this much pain. I don’t know why. Let’s find out together.”

One explanation offered from my first gyno was that because I am severely allergic to all effective painkillers, meaning opiates and opioids, that the experience of moderate daily pain was causing sensitization. Because there was no relief, even temporarily, from pain, my body was becoming more sensitive each week, driving my pain up the scale. It’s a positive feedback cycle. Daily moderate pain started to feel like daily severe pain simply because there was no break from it. I developed an ulcer from the stress of the pain, which means I couldn’t take NSAIDS due to stomach bleeding, but they wouldn’t have done much anyway.

The gastroenterologist said that stress was making my pain worse. If constant pain makes you stressed and the pain gets worse, your stress increases too. He encouraged me to try meditation and breathing exercises, and they do help somewhat.

Pain touches the body and mind in an obviously negative way, but the worst part was depression. There was a definite pattern to the decline in my emotional health, and it had to do with hope of a solution and a return to normal life. The longer I waited for a diagnosis, the more depressed I became. The more research I did, I realized that I may spend my life in chronic pain, spending a lot of money on medical bills, with little hope of relief until menopause. No one could help with the pain, it seemed, because I couldn’t take anything for it. My mood worsened.

One month after starting the birth control, I told my gyno that I thought the pill was making me depressed. I’d been having uncontrollable and unexpected crying jags for seemingly no reason, and I’d read that depression was a possible side effect of some brands of birth control. He gently told me that this class of birth control doesn’t have depression as a possible side effect; others do, but not this one. He asked if I had a history of mental illness, and I said yes, but I’d been stable for four years. He said that I was under a lot of stress and undergoing quite a lot of pain. It would be unusual not to be depressed, and also that four years of stability is about the average, and I was due for a relapse and a medication adjustment. My partner reminded me that I’d been bedridden in the same room for months, experienced intense daily pain, had taken a very long leave from my fulfilling job, and wasn’t able to walk or exercise. Anyone would fall into a depression in my shoes.

I moved in with relatives so that my partner could focus on work. It’s very draining emotionally to take care of someone who is bedridden and in a lot of pain, not to mention lapsing into depression. I thought it would be easier for both of us.

I focused on all the things I could do when I could walk again, like go back to work, go walking in the park, go to karaoke with my friends, go out to dinner with my partner, and go to galleries and plays. I would watch foreign movies on Netflix and fantasize about eating regularly again: pastry, Thai food, German food, sushi … and later dream about food that wasn’t broth, gelatin and Metamucil.

The week of my colonoscopy, I experienced a huge emotional blow due to problems within my relationship, and my depression worsened. I stopped sleeping through the night and spent about two days in a series of panic attacks. I saw my doctor and he adjusted my medication, but I’m still trying to cope with this stress. Prolonged illness was bad enough, but I had hope that when the treatments were over, I could return to my happy home and life as usual. It’s not as easy as that now.

I spent a few weeks crying in supermarkets and drug stores, crying when I would hear familiar songs, staying up for all but one or two hours a night struggling with panic attacks, trying desperately to fake normal emotional levels and not being able to do so. I even cried onto a phlebotomist who wouldn’t stop asking personal questions (She was prying and pretty much asked for tears on her jacket). Isolation drove me to reach out on social media. I admitted that I wasn’t doing so well and needed help. As hard as that was to admit, many people came forward to offer support. A few messaged me every night, all night if the need was there, and I am eternally grateful for them. If you can manage the vulnerability of admitting you need help, you will find it.

Questions about the future regarding livelihood, health, and romance don’t lead down cheerful trains of thought. I dearly hope I don’t lose my job, or a long series of jobs, due to this disease. How does anyone reasonably manage a romantic relationship with this particular type of chronic pain? Do we demand that our partners be celibate when we are, no matter the duration? Do we acknowledge that our needs and wants are different when one person is frequently ill, and they are allowed outside sexual encounters? Or do we simply say that we’re better off living independently, even if we may struggle emotionally and financially due to this illness? I’m not actually looking for answers to these questions. Instead, I’m considering adopting a shelter dog.

Daily pain changed my personality, and I can recognize that. I wasn’t exactly chipper to begin with (I’ve been compared to Daria and Aubrey Plaza), and now I’m frequently withdrawn when the pain hits. Honestly, I’m not as much fun as I was before. Intense daily pain for months on end made me nearly suicidal, and while that’s a common reaction, it’s not easy to live with. It may be unreasonable to ask anyone to live with me at all.

Depression sticks around despite changes to medication and a strong commitment to getting better physically and emotionally. Every morning I wake up and plan activities that my normal self would enjoy. I look in the mirror and practice smiling. This is what a genuine smile looks like, do that when you see people. I plan social engagements, then wonder later if I smiled or laughed enough to convey that I’m having fun. Doing anything other than reading is exhausting. Spending time around people is exhausting. Answering any questions about my health or relationship is exhausting. Pain is exhausting. I am frequently in pain; I am exhausted. My therapist has asked me to seek out small gratitudes and moments of joy in each day, to actually practice being content. Through the mental static of anhedonia, I recognize that happiness is a choice, and a valid one.

It’s difficult to meditate on happiness when I am in so much physical pain. No one I’ve talked to or read about has said, “Why yes, my pain is greatly reduced and my life is nearly normal. I can manage my symptoms, and my treatments are affordable. My doctors take my pain seriously and find solutions in a timely manner. I can work long hours, exercise vigorously, and have great sex. The future looks good, even with this disease. There’s hope in there somewhere.”

What I seem to be looking at is decades of chronic pain, surgeries that may or may not help and will drive me deeper in debt, medication that is risky and also may not help, little or no sex life, and bowel disease that may worsen drastically as I age due to co-morbidity. Clinical depression is understandable considering the experiences of the last six months. Suicide really does look like an option some days. I know I can’t be the only one to think so.

Every person I know who struggles with severe chronic pain, no matter the underlying illness, has admitted to considering suicide. It’s not that life isn’t worth living any more or loved ones don’t matter, it’s that life has become a seemingly endless tunnel of pain. One more hour seems like too much, much less one more year or decade. Let it be known that suicide is not a sound idea and causes more suffering than it ends. If you are planning suicide, please call a hotline or arrange a ride to the nearest ER. However, it’s understandable, even normal, to think about suicide when living with painful, prolonged illness.

I realize that I won’t feel this way forever as long as I engage in healthy and productive activities and go on living life. I keep my appointments, take medication, exercise as much as I can and engage in social activities. Mostly, I act as if life is going to get better, even though my mind doesn’t seem to agree with me right now. I’m hoping that sharing this less-than-sunny account will help other people who live with pain and depression feel less alone.

Dealing with Doctors When You Have Undiagnosed Endometriosis

by Angela Wice

Published on May 16, 2013

6794 views

I have been going from doctor to doctor for 23 years for my endometriosis. I have yet to find one that actually listens to me. Is it me or do doctors not listen to patients? Maybe they don’t believe us when we describe the pain of endometriosis. Maybe they don’t believe us when we break down and cry after years of misdiagnoses, endless medications that didn’t work or made things worse. Or maybe, our pain is just too real and because they know they cannot treat it, they back away and ignore it. I don’t know why so many doctors treat endo patients the way they do, but I know it’s never going to change if we keep suffering in silence. The pain is real and shouldn’t be ignored. That is why I share my experiences here on Hormones Matter^TM and on other social media sites. If we don’t speak up, how will they ever understand how much we suffer?

My Experience with Doctors

My first doctor seemed like she was out of it and not interested in my pain. I didn’t feel that I could speak to her. I was young and so I just believed what she said and left it at that. I always thought she would tell me what I needed to do next to feel better. I went to see her about my horrible cramps. Immediately, she thought it was endometriosis and left it at that; no medications, no treatments, and no advice whatsoever. At 13 years old, I didn’t think twice and went on my merry way.

Soon, the pain was so bad that I found another doctor. I saw him for almost five years. He ordered tests, prescribed different antidepressants. Needless to say, the antidepressants did nothing for the pain of endometriosis. If it wasn’t blatantly clear that it was cancer or some other obvious disease, he had no clue what he was doing and he had no interest in diagnosing or treating my pain. He finally told me that I cried too much and that could no longer be his patient. I think he’d cry too if something were strangling his insides.

During my teen years and into my 20’s I must have seen over 15 doctors and specialists. I had a neurologist tell me to touch my nose and when I did, he said I was fine.

Probably one of my worst experiences with a doctor came three years after my daughter had been born. One day I called, because I was feeling flu like and nauseated every day. The secretary booked me that day even though they were busy. While I was in the waiting room, I could see the doctor having an argument with his assistant, I assumed for putting me in when he was full. When he called my name and while walking into the room in front of everyone, he said to me “What is so wrong with you that you had to bud in front of all of these fine people?” OMG I was so angry I told him I didn’t need this treatment and walked out and never went back to him again.

At this point, I had been suffering with untreated Stage IV Endometriosis for 13 years. I had seen multiple doctors who either ignored my pain or made me feel as though I was somehow imagining it. Frustrated, I finally started to do my own research. I found support groups online to help me with what questions to ask the doctors. I found yet another doctor and scheduled an appointment. He told me after reading my Ultrasound report that he was sure it was endometriosis and that he would book a surgery for it.

Talking to my friends online made all the difference in the world. They told me to ask questions like what to expect, what could make the surgery change from laparoscopy to open surgery etc.

Next time I went in to see this new doctor, the one who said my ultrasound showed endometriosis, I started the conversation with “The last time I was in you said I probably had endometriosis” I was about to finish my sentence when he got really angry at me. He said that he never said I had endometriosis. When I tried to ask more questions, he got mad and said I wasn’t ready for surgery and then cancelled the surgery and red flagged my file. I was so confused. Why was I not allowed to ask questions? It was my body that he was operating on. He had such a God complex. I walked out of his office.

No wonder people with long-term, undiagnosed medical conditions get depression. They are treated like crap, like hypochondriacs and as if we are wasting the doctor’s valuable time.

After 15 years of excruciating pain and being treated poorly by many doctors, I finally found a doctor to operate on my Stage IV Endometriosis. The surgery was a success. I thought that I would feel vindicated, but I didn’t. I was, and I am still, angry with how I was treated.

I have been talked down to by many doctors. They have made me feel really uncomfortable about myself. They made me think I was going crazy. I can’t even count of how many times I contemplated suicide because of the mental stress my health put on me, the fact that I had no one to understand what I was going through and not even a doctor who cared to listen. If they did, they would have known I had all the symptoms for endometriosis.

Even after all of this, every new doctor brings with him the risk for misdiagnosis and mistreatment. Read my story about developing Pelvic Inflammatory Disease, Post Endometriosis Surgery and the horror of getting that diagnosed appropriately. My present doctor now knows nothing about endometriosis, a disease that affects millions of women around the world. How does this young, female doctor NOT know?? I just go there now and tell her the tests I need done and what drugs I need or if I need to change them. She does nothing on her own.

Lessons Learned about Endometriosis

If I have learned anything through this ordeal it is too keep your own medical records, be an advocate for your own health and ask a lot of questions. If you want sympathy or empathy and a little understanding do not expect to get it from your medical doctor. Find an online community of women with a similar condition. That is where you will find the support you need to survive.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

chronic illness - Page 2

Becoming the Person I Hoped I Was