Category — General

Today, I thought I would write about holiday suggestions for people living with chronic illness. Obviously what is helpful for one patient may not be for another. After all, each person is unique. However, I tried to include some themes I have seen arise for me personally and for many of my fellow chronically ill patients.

If someone doesn’t understand (or listen) when you try to explain a change of plans or the need for rest, accept the fact that you tried your best to communicate the situation to them. Ultimately, you can’t control what others will think.

While we all try our best to be thankful throughout the year, this time of year brings added “pressure” (for lack of a better word) to express gratitude. Don’t get me wrong. Gratitude is a wonderful thing. The trick for many chronic illness patients, in my estimation, is that it can sometimes be difficult to focus on gratitude when pain and suffering are so significant that they make it challenging to focus on it.

I will try to avoid including platitudes that may be less-than-helpful… or tips on how to tap into your gratitude. Anyone reading this more than likely has a good idea of how to tap into that. My hope is that anyone who happens to be reading this (regardless of which country you reside in or whether or not this is a holiday week for you) might come away from this post feeling a bit more confident about setting appropriate boundaries, knowing when to say no (i.e. not accepting jobs/activities/duties that are likely to be detrimental to one’s health), and knowing when to rest.

Also, I believe that no matter how serious one’s health problems are and no matter how stressful the situation may be… there is virtually always something to be grateful for. If you are struggling to identify something, start with the most basic things. Every day on which we each wake up and start with a new slate is a gift. No matter how much pain and suffering one is experiencing, odds are, statistically, that if you’re reading this post you are relatively unlikely to be homeless or suffering from hunger at this time.

Does that mean there aren’t any people reading this who are really suffering in those ways (struggling to meet their needs… not just wants)? No, not at all. I know that quite a few of my readers experience plenty of suffering (of all sorts… including serious concerns about having safe housing and enough food to eat) – as many of them have shared their situations with me “off the blog”. After all… overwhelming medical bills can lead to debt, to difficulty paying for basic needs (such as food), and it can even affect the ability to find affordable housing. So, I don’t mean to gloss over these issues – because I know for a fact, from talking with many of my readers “off the blog”, that these challenges can be alarmingly close to becoming reality (if not already so) for many.

Having nearly lost our house a few years ago (following crushing medical bills for my care), I remember the fear and anxiety that we felt while struggling to save it. Quite literally, I cannot put into words the degree of stress and anxiety that resulted. So, I most definitely do not wish to minimize the emotional pain involved or to dismiss what anyone else is experiencing.

My thoughts and best wishes go out to everyone at this time. Most especially, my thoughts are with those who are homeless. When the temperatures dip as they have already this year, I can’t help but think about those who don’t have shelter or enough food to eat. This Thanksgiving, I will be sending out positive thoughts and energy to those in need.

Finally, I would also like to thank my online friends for the support, information, validation, insightfulness, courage, and humor you display every single day. It is awe-inspiring!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support!

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If you’re like me, you have read before about the topic of judgment in the context of chronic illness and chronic pain. Perhaps you’ve read about people who were unfairly judged in the workplace. Or maybe you’ve read about people being unfairly judged by their very own family members and loved ones. I personally can’t think of anyone who appreciates being judged by others in this way.

The emotions that may spring up in conjunction with being judged can compound the challenges faced by patients since it can add emotional pain to the physical pain the person already experiences. Sadly, it is not unusual for chronically ill patients to find themselves in such situations. In fact, I daresay anyone who has lived with chronic illness and pain for any length of time can relate. Feeling misunderstood by people in the workplace (assuming the patient is even able to continue in the workplace) and feeling misunderstood by loved ones are all-too-common (and often maddening) experiences for a great number of people living with chronic illness. No one wishes to be misunderstood.

Today, though, I’d like to focus on a different type of judgment (than that of workplace people or loved ones judging the patient). It’s a type of judgment that I have experienced firsthand. Many patients I know have experienced it as well. It’s another form of judgment that can wound deeply and leave emotional scars as remnants.

Judgment from people we thought were “safe”:

What happens when we are judged by fellow patients?

While this isn’t the most pleasant subject, I decided to write about it today because I’ve seen it play out in the lives of many people who live with chronic illness. Yet I don’t recall ever seeing it written about. Not in books, not in magazines, and not in blog posts… I’m sure someone out there has written about this topic. I myself just haven’t come across any writing pieces that focus specifically on judgment of chronic illness patients by chronic illness patients.

What happens when judgmental, critical remarks are made by fellow patients? This scenario can induce a different type of pain.

When patients feel judged by other patients (based both on what I have experienced firsthand and what I’ve seen with chronically ill friends of mine) the sense of betrayal can have an especially potent sting. Most chronically ill people that I know are especially caught off guard by judgment/criticism aimed at them by fellow patients. Each patient is unique. What works for one patient may not work at all for another. No patient is in a position to judge another’s choices or treatment plan.

Judgment can mean many things depending on context. I may have chosen the gavel photo above as a visual but I’m obviously not writing about judgment in a legal context here. The “criticism or censure” mentioned in this definition of judgment is the best for for what I am talking about. The phrase “sit in judgment” listed there (under part b for “to assume the position of critic”) is what I am referring to. Essentially, the notion of criticism is key to what I would like to discuss. I’ve seen fellow patients become downright bossy regarding what they see as the proper course of treatment for me. (Never mind that it’s my body and that I don’t like it when people talk to me as if I don’t know how to advocate for myself). What patient likes to feel like she’s expected to obey a fellow patient regarding treatment options for her own body? Certainly not me!

How many of you have ever experienced any of the following (from a fellow patient)?:

Implication (or outright statement!) that you should disregard the medical advice from your own physician/s (and instead follow that person’s idea of how to treat your medical condition/s?)

Personally, I think when one person feels “bossed around” in this way by another, it can be poison to the relationship. Unfortunately, it is not all that uncommon for people living with chronic illness to judge and/or criticize one another (whether overtly or in a more subtle fashion). Clearly this can be hurtful for the patient who feels he/she has been judged by someone who had previously been viewed as a “safe” person in whom to confide. Helpful ideas/suggestions are one thing. Unsolicited advice is another (especially when there seems to be an expectation that the person being “judged” really “should” take the advice).

Some examples of categories of people who may engage (however unintentionally) in “judging” fellow patients:

Advising others to disregard medical advice: As virtually any person living with chronic illness is well-aware, doctors are not perfect. They make mistakes like any other human beings. Sadly, there are some doctors who are corrupt, misinformed, arrogant, and/or ill-equipped to diagnose and treat the illness(es) at hand. However, no patient is in a position to give advice to other patients along the lines of “ignore what your doctor says”. It’s one thing to diplomatically raise concerns for the well-being of a fellow patient. It’s quite another to leave that person feeling like you’re telling him/her to disregard what their doctor has advised. (This brings up liability issues as well). The notion of strong-arming an online acquaintance into ditching advice from his/her physician/s when the person suggesting doing so has never even met the patient in question (and when the person making the suggestion is not a health care professional) is risky. Suggesting a person explore options (such as getting a second opinion) is one thing. (That can be a very helpful suggestion). Telling someone (in so many words) “your doctor is incompetent” is another.

Here’s the million dollar question… What do you do when a fellow patient appears to be sitting in judgment of you? What do you do when comments (be they subtle or blunt) are made that make you feel uncomfortable? I have had numerous conversations with people who live with chronic illness who have experienced these scenarios. I have found myself in the position of having been judged. What I’m wondering is how many of you have experienced this and how did you handle it? I would love to hear your feedback. Please take a moment to leave a blog comment. I think this is an important topic that affects many people. How can patients living with chronic illness/pain avoid falling into the trap of judging fellow patients? How can patients who feel judged articulate how it makes them feel when other patients judge them (perhaps without even knowingly engaging in judging anyone)?

How can we encourage compassionate support between fellow patients and speak up for ourselves when we are uncomfortable with comments we perceive as judgmental and hurtful (if indeed we determine that it is worth speaking up in a given situation?)

Your feedback on this topic is much appreciated. I believe it is crucial for patients to support each other (whatever personal choices they may make for their own bodies and lives) and avoid passing judgment on each other. Sometimes, there can be a fine line between diplomatically worded suggestions and judgmental/critical remarks that hurt fellow patients. What are some ideas for how to word suggestions so that they are not mistaken as/perceived as “orders”? If one has concerns about another patient’s well-being, what are the best ways to convey that concern without coming across as bossy or condescending?

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Right now, I’m like a car that is out of fuel. I just have no energy.

I am really sick. I look forward to getting back online as soon as possible. I miss talking with all of you and hope you are doing as well as realistically possible. I’m sending healing energy your way.

Hopefully I’ll be able to get back online soon. Right now, I just need to rest. Thank you for your patience. Take care.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Taking a break. It sounds easy, right? It sounds like something to look forward to, doesn’t it? Sometimes it is just that. However, I would hazard a guess that many people who live with chronic illness and chronic pain have times where they find it extremely difficult to take a break. Taking a break isn’t always a piece of cake.

Generally speaking, I tend to operate on “the edge” most of the time. What do I mean by “the edge”? Well, I have a tendency to push myself… hard. Sometimes I push myself too hard. This can result in sleep deprivation, loss of perspective on what the healthy limits are (for me with my chronically ill body), and burnout. So, when something unexpected comes up or added stressors enter the picture it can be very difficult for me to deal with everything at once.

The trick for me is in knowing how and when to pull back from activities that must wait (such as writing this blog and replying to messages) during times when I just don’t have enough energy to do everything I want to do. Taking a break from my blog is quite stressful for me. It causes me to become disconnected from the wonderful, supportive online community of people living with chronic illness. It results in me getting behind on replying to emails and Facebook messages from other patients. It also makes me get behind moderating and replying to blog comments. Getting backlogged on all of the above is stressful for me. I don’t like the idea that anyone might think I’m ignoring them. Taking a “break” only to return to a backlog of messages stresses me out.

Here is the thing, though. There are times when taking a break is absolutely needed and warranted. The “break” may not necessarily be to rest. It may be to focus on other activities that need attention. It may not be a “break” in the traditional sense at all. It may simply be a temporary change in routine. A change of focus. The type of break I’m talking about is more the kind where one is not necessarily resting (not that those type of breaks aren’t important too!); it is the type of break where one chooses (or is forced to accept) that one set of activities must be put on hold for a certain period of time. There either aren’t enough hours in the day or there isn’t enough energy in the person to do everything on his/her plate.

What does it take to make you take a break? Do your loved ones need to remind you to take a break? Do you recognize it yourself and take swift action? Does it vary… sometimes you take swift action to get things “into balance” but other times you push yourself too hard and life ends up forcing you to accept your limits? Do you find it difficult to balance everything on your plate? How do you restore balance when things get out of kilter?

I would really love to hear everyone’s ideas on this. Please take a moment to leave a blog comment. You don’t need to have a blog to leave a comment. To leave a blog comment, all you need is your name (screen name is fine) and email address (which no one will see but me). This (finding balance/knowing when to “take a break”) is a topic that affects everyone but it really impacts people living with chronic illness. I would love to hear from people regarding how they cope with finding a balance, prioritizing tasks, managing time, and preventing burnout. Your comments are appreciated.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Eight is enough! No, I’m not talking about the television show from the 1970s called Eight Is Enough and, yes, I’m aware that many of my readers are too young to even know what show I’m talking about.

When I say “eight is enough”, in this case, I’m referring to the number of consecutive days I’ve had a migraine. Eight is really enough. I had a few migraine-free days before that and another 8-day migraine prior to that. I’m hoping to wake up tomorrow and find that 8 was the “magic” number this time too.

Of course, given what’s happening with my hormones combined with the fact that I have an abscessed tooth, I may be engaging in wishful thinking. Hopefully the tooth extraction this Thursday will help regarding migraine triggers. In the meantime, my blood pressure is spiking every time I have a migraine.

I just wanted to take a moment to check in here. Other than those who have seen me pop up occasionally on Facebook, most of you haven’t heard much from me in awhile. (Popping up on Facebook simply takes less time and energy than writing blog posts). Thank you for your continued patience.

By the way, yes I know the number 8 on that golf course sign above is upside down. Everything seems upside down lately. (We’re working on that last one). So, I thought this photo was perfect for now.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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As I mentioned previously, I have an abscessed tooth that needs to be extracted. A root canal was attempted on this tooth awhile back but due to the unusual nature of the tooth, it was not possible to do a successful root canal on it. (The instruments were bending and it simply wasn’t possible to go any further). Two endodontists later, I have been referred to an oral surgeon to have it extracted.

The green number 29 above refers to the tooth number affected. The green arrows and number 2 below indicate that this tooth has two roots despite the fact that it is not a molar. (It should only have one root). The yellow arrow points to the tooth behind that one. It is marked with a crown symbol because it has a crown on it. The red arrow points to the abscessed area beneath tooth number 29. The blue arrow points at the tooth in front of tooth number 29. Last but not least, the purple arrow above all three teeth indicates where a bridge will go (over the three teeth). I’ve been told that it may take months for the area to heal sufficiently following the extraction before the bridge can be installed. (The crown will come off and the bridge will sit where it is now).

Having had two previous extractions where anesthesia failed (and I felt everything!), I have been very nervous about having another extraction. On top of that, out of the four colonoscopies I’ve had, for two of them the IV sedation failed and I felt everything. (For the other two colonoscopies, the pain wasn’t as bad but I never got sleepy – the way the hospital staff kept telling me I would/should).

To make a long story short, my dentist sent a letter to the oral surgeon explaining why he believed general anesthesia would be appropriate in my case. Thankfully, the oral surgeon “gets it”. Since he is the chief of the oral surgery department and since his office suite is located right in the hospital building, it will not be necessary to use an operating room. (He has everything he needs right in his office and he can administer the anesthesia). This will cost far less money than having general anesthesia in the operating room. It will be done as an outpatient. The figures I was given by phone were far higher than reality. He apologized when he learned of the figures his staff had given me and told me that I had been “misinformed”. What a relief that it is far less money than I was told initially and that he’ll be using a general anesthesia medication.

In the meantime, I recently had a migraine for 8 consecutive days. I don’t think the abscessed tooth helped matters any. (My primary care physician was telling me last week about how my dental issues could affect the migraine pain).

Now that my migraine is gone, my blood pressure has stabilized. It had gotten quite high during the migraine. My primary care physician instructed me how to tweak the dose of my blood pressure medication (something I need to do based on where I am at in my cycle). Right now, I’m on the usual dose. I don’t want to double the dose unless I really need to. Plus, altering the dose may affect my Reynaud’s.

In any event… between the migraine for over a week, the abscessed tooth, the appointment that got squeezed in because my PCP wanted to talk (in person) about the blood pressure spiking up and down, and other medical appointments, I have been feeling drained and overwhelmed. I will be happy to get this extraction behind me (scheduled for early October).

To say that I am behind on replying to emails, blog comments, and Facebook messages would be an understatement. I can count on one hand the number of blog comments I have submitted in the past month or so. I appreciate everyone’s patience. What I’ve described in this post is really just the tip of the iceberg, I’m afraid. I really dislike getting backlogged on messages. While I know that other people who have chronic illness(es) understand, it still overwhelms me when things get as backed up as they are now. Thank you all for your understanding.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Sometimes with chronic illness and chronic pain, we have to rest whether we like it or not. While it’s frustrating not to be able to do the things we’d like to do, it’s important to listen to our bodies and heed the warnings. So, while I have so many ideas spilling out of my head I don’t know what to do with them, I need to rest right now.

That means I need to stay offline until things stabilize. Besides, with all of the calls I need to make to health “insurance” and dental “insurance” companies, there’s not much time left to be online. (For those of you who aren’t connected with my Facebook account, I had a failed root canal for which I’ve seen two endodontists). The tooth cannot be saved.

It needs to be extracted. I have a history of incidents where anesthesia failed (including two previous tooth extractions). So, a simple extraction is becoming quite complex and the cost involved is frightening. I’m not sure how long I’ll need to curtail my “online time”. Right now, I’m waiting for a migraine to clear and it has caused my blood pressure to spike. I will be back online as soon as I can. Thank you for your patience.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Today is World Suicide Prevention Day. As regular readers of my blog are aware, I have written about the topic of suicide on numerous occasions. I believe it’s extremely important to get people talking openly about this important topic.

Let me explain why I initially began writing about suicide. I closely monitor the traffic that reaches my blog. Awhile back, I felt compelled to write about suicide because of the frequency with which people were reaching my blog after using search strings such as endometriosis and suicide. That is just one example of a search string that got my attention and made me feel it would be advisable to write about suicide prevention.

Subsequently, I took a safeTALK suicide alertness class. I referenced it previously in this post.

Below are some links to previous posts I have written on this topic:

According to the American Foundation for Suicide Prevention:

“Research has shown that 90 percent of people who die by suicide have a diagnosable psychiatric disorder at the time of their death, most often unrecognized or untreated depression”.

Recently, I read about a study that found one in 10 suicides to be linked to chronic illness.

That article led me to a study by Demos. The authors of the study (Louise Bazalgette, William Bradley, and Jenny Ousbey) investigated “the truth about suicide and serious physical illness” and found “that at least 10 per cent of the suicides that take place in the UK are by people who are chronically or terminally ill”. They also found that there is a “wide variation in how verdicts of suicide are recorded by coroners and made available to the public and policymakers”.

From Demos:

“Despite some progress made in our cultural attitudes to death, suicide remains very much a taboo subject. This discomfort has serious consequences, as it may be preventing proper analysis of the root causes of suicide. While some of the risk factors for suicide – such as gender and mental illness – are well-known, there is a vast hinterland of research waiting to be done on other potential factors. Physical illness [emphasis mine] is one such factor…”

To read the entire study, click here to read The Truth About Suicide (by Louise Bazalgette, William Bradley, and Jenny Ousbey).

Needless to say this study got my attention. Having spent a fair amount of time reading through materials about suicide, this study was the very first one that I have encountered that looked specifically at the link between chronic illness and suicide.

From the Guardian article that led me to the Demos study:

“A Department of Health spokesman said its mental health strategy recognised ‘that physical illness increases the risk of mental health problems and vice versa’. We are consulting with bereaved families and experts in general practice, local government, and other organisations on a new strategy to prevent suicides.

The consultation calls upon healthcare professionals to be alert to mental health issues, especially depression, in the patients that they see for known physical health problems, and to take the right steps to help people with long-term conditions have a better quality of life”.

It is great that such research is being done and I think it was long overdue. More is definitely needed. It is also apparent that the potential overlap between mental and physical illnesses in the same patients isn’t being overlooked by these individuals. It’s important for people to understand that many patients cope with both physical and mental health conditions.

Another study, conducted by Temple University, looked at whether suicide might be under-reported for political reasons:

Without a doubt, the stigma associated with suicide and the reluctance some people have to discuss it are barriers to preventing suicide. It is imperative for those who are at risk to be identified and referred to suicide first aid resources.

Moving on to what another blogger is saying to get the conversation started about suicide, I’d like to refer readers to another post for suicide prevention week.

Trigger warning: Since many of my readers struggle with or have experienced infertility and/or pregnancy loss, I just wanted to take a moment now to make clear that Shaping Youth is a ‘forum about media and marketing’s influence on kids’. If you’re more comfortable skipping past this section, please be sure to see the resources listed at the end of this post.

Some of you may be familiar with Amy’s 2009 post Diagnosis Endometriosis: What to Know As Preteens Grow. As I mentioned earlier, my blog receives many visitors who search on phrases such as “endometriosis and suicide”.

Yesterday, Amy shared my 2010 About Suicide Prevention post within her information-packed post Talk To Me: Because Media Matters For Youth Outreach. I am very pleased that Amy is shining a spotlight on the topic of suicide and I encourage my readers to check out Amy’s post. I think it is important to “start the conversation”, as the campaign Amy referred to suggests.

The more open people are about discussing suicide, the more likely the people who need help locating appropriate resources are to discuss their situations. Most people who have thoughts of suicide DO send out “invitations” that ask for help. Again, let’s start the conversation.

Regardless of the factors that contribute to a person having thoughts of suicide, it’s crucial to for people having suicidal thoughts to get connected with suicide first aid resources.

If you, or someone you know, is having thoughts of suicide please call a hotline (resources are listed below).

Suicide first aid resources:

In the United States, please call call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

Outside the United States, please see this website for the International Association for Suicide Prevention (IASP) . It will direct you to the hotline nearest you:

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support!

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This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support!

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).