Tuesday, April 10, 2007

About Me: Introduction

I decided to start this blog to create an outlet where I can discuss my own health challenges, and hopefully, to hear from others who have or are experiencing similar issues. My biggest health problem is my struggle with endometriosis, adhesions, and pelvic pain.

I have suffered from painful periods for most of my life, starting at adolescence. In the past few years, my pain has significantly increased and has become severe, daily pain. Despite many treatments, medication, and surgeries, the pain is not under control. Between the pain, fatigue, and side effects of my medication, I struggle to manage daily life. I have been disabled by my symptoms for several years now and have been unable to work.

This blog is where I'd like to chronicle the medical, financial, spiritual, interactional, emotional, and other consequences of my condition, and seek and give support around the issues of chronic pain; chronic illness; endometriosis and pelvic pain; and disability in general.

If you are reading this and have a health challenge that severely impacts your life long-term, or know someone who does, please leave a comment, or send an email (I should have one up on the sidebar shortly if it isn't already there), to introduce yourself. I'd love to hear from you.

Thursday, February 8, 2007

The Endometriosis Diet?

One of the most common questions I hear when I tell people about my chronic pain and disability is "Have you tried alternative treatments?" Most people seem to think that what "Western" medicine won't cure, "alternative" medicine will. What I've found since suffering from disabling pain is that most people want to offer a solution and don't want to believe that sometimes there isn't one. Suggesting alternative treatment is just one manifestation of that attitude.

And the truth is, until recently, I haven't had much faith in so-called alternative methods. Why? Certainly not because I have any less faith in alternative medicine than in Western medicine, but simply because, when it comes to my conditions, I have little faith in either! I've tried and researched treatments from all ends of the spectrum for my conditions and have found that in most cases nothing works. The illness I have (endometriosis) is a chronic, incurable one and many, many who suffer from it don't find relief or get worse (some women do get better, but not because of the treatment they tried. Many just don't get better no matter what they try.)

I've tried acupuncture for a long period of time, I've tried Chinese medicine, I've tried the vitamins and supplements that are supposed to help, the lifestyle changes and the relaxation methods. I've quit smoking, and meditated, tried a macrobiotic diet, and taken lots and lots of calcium supplements. I've drank the herbal teas and the nauseating concoctions mixed up by the herbalist. I've also tried surgeries, and pain-management treatments, and physical therapy, medications with side effects, and all the other medications and treatments the "Western" doctors threw at me. I went to support groups and traded information with other sufferers, I read the online message boards and traded emails about treatments. Nothing worked. In fact, I got worse after each of my three surgeries. I developed adhesions on top of the endometriosis.

But lately, I've thought about the fact that my dog sees a holistic vet, who prescribes all sorts of herbs and nutrition therapies for him. And you know what? They actually work. I've seen his thyroid levels go down from the herbal medicine, or his tumor held at bay from the herbs and nutrition. Lately, I've started thinking, if it works for him, why not for me? At this point, I don't expect a cure or magic relief of my symptoms. But I know that there I things I might be able to do that might help, or at the very least, if not help with my pain, at least just get me healthier.

Usually, alternative treatments are expensive and time consuming. As a disabled pain patient, money and energy/time are two things I am usually running very low on. So even if some treatments have a chance of helping, such as the traditional Chinese medicine that I was told I needed to try for at least a year, once a week, at a hundred dollars a pop (no insurance reimbursement, of course), is out of the question, even if it might help. Get me a chauffeur and personal assistant to drag me out of bed, drive me the appointment, and a trust fund to foot the bill, and I'm there. Until then, I'll stick to trying treatments that are actually realistic and possible.

One "reasonable" approach I want to look more into is diet. Again, I don't believe it will cure me, nor do I believe that at my level of disability, I can stick to it fully. I don't grocery shop or cook anymore, and my husband works full-time and takes care of me, so putting a lot of time into cooking isn't exactly his priority at the end of a long, tiring day. But I think it still helps to be aware of what eating habits might be helpful and see if we can incorporate some of them into our eating. Luckily, neither of us eats meat, and we already try to focus on eating fresh, organic fruits and vegetables, so we've got that foundation already down. We don't eat a lot of sweets or dairy or a lot of fats or junk food. So what else can we change?

The diet I found on the diet section of the site EndoResolved suggests the following:

"* Increase omega-3 fatty acids
* Avoid meat, dairy products, wheat and sugar
* Increase fiber
* Modulate estrogen
* Avoid caffeine and alcohol
* Avoid refined foods, e-numbers, additives
* Minimize or avoid soy products (as they contain high levels of phytoestrogens, and soy contains a particular toxin which seems to be particularly detrimental for women with endometriosis)
* Peel fruit and vegetables to remove toxic chemicals
* Eat organic produce wherever possible
* Drink lots of filtered or mineral water"

The site also links to a research article that suggests that certain foods, such as animal fats, fish, and dairy (all of which contain more of the chemicals that may contribute to endo. and are harmful regardless of whether or not you have endo.), are to be avoided. They suggest a plant-based diet (I've been a vegetarian for about 15 years, but that did not prevent endometriosis or pelvic pain for me) and an emphasis on immune boosting foods nutrients, such as "beta-carotene, found in orange vegetables, such as carrots and sweet potatoes; vitamin E, found in grains and beans; and vitamin C, which is in many fruits and vegetables."

Maybe I need to focus on adding more of the immune boosters to my diet and reducing or eliminating dairy. As it is, I rarely eat dairy (or eggs) except for in my coffee (milk, I'm talking about, not eggs!), and we only buy organic dairy products to eat at home. Even though I already practice most of these suggestions, and have for many years, with no noticeable effect on my symptoms, it can't hurt to try to add in a few more of the suggestions. I may also speak to my doctor about natural progesterone, but only after researching some of the negative side effects first (If you know about the good and bad effects of natural progesterone treatment, please comment or email me!). Maybe the dietary changes won't help my pain, but they can't help but at least make my body somewhat healthier overall, and that's always a good thing.

Have you tried a specific diet that helped with your pain or illness? What was it? What are "alternative" methods have or haven't worked for you?

My Cycle of Pain

I'm back from the torrents I get swept under for a few weeks per month. Though I have disabling pain every day, for 2-3 weeks of the month, it is much more severe. As my menstrual cycle approaches its second half, my pain drastically increases in severity. As a result, of course, I have to increase my medication dosage, as the pain is perhaps two or three times what it is the rest of the month. Eventually, as I reach the day of my "period" (I put it in quotes, because I still have all the effects of a period, other than the actual bleeding since removing my uterus and keeping my ovaries), the pain skyrockets.

At that time, it seems no amount of medication can help, and just like I've done for years before my hysterectomy, for most of my life in fact, I struggle through the next few days in intense pain. The day the pain decreases I inevitably am extremely sick, I assume from taking so much medicine, and I become quite ill: migraine headache, nausea, vomiting, etc. So even though my pelvic pain is somewhat better on that day, I end up spending the whole day extremely sick and unable to function. Sometimes, it takes two days to recover, as it has this month, and sometimes, only one.

The problem (other than the actual pain and sickness part, which is just a given in my life nowadays) is that as soon as I begin developing a routine, or force myself to try to engage in some sort of responsible behavior and take care of some of my errands, the painful 2-3 weeks of my month begin and all those habits and efforts are lost again. I take so much medicine and am in so much pain during the bad parts of the month, that I usually do nothing during the day other than try to survive it.

Then, trying to reestablish good habits, to the degree it is possible with the pain and medication I have on my better days, becomes very difficult. It is a horrible cycle, because as soon as I feel a little better and think I might actually be able to take care of some things, I become extremely sick again and drop out from the world even more than usual. I cancel or forget about appointments. I don't check email (I hardly ever check phone messages to begin with), and any sort of schedule I might have tried to impose on myself goes out the window.

One other problem with this cycle is that most who have chronic pain don't experience it in quite this way. My doctors don't quite seem to grasp that I need a very different amount of medication during one part of the month than I do in the other. One pain-management doctor who wanted to put me on longer acting medication did not believe in taking short acting pills for breakthrough pain. I already don't agree with that, but was willing to try it his way regardless, as long as the long acting pills were strong enough to mostly control my pain and prevent the need for breakthrough medication. But, he also wanted me to take the same amount of medicine during all times of the month, despite the fact that my pain is literally 2-3 times worse during more than half the month than it is during the rest of the month. That is plain and simple just gross undertreatment of pain, and makes little sense.

If my pain was that bad all month, I don't think he'd suggest taking only 1/3 of the medication that I need, but because it is that bad for weeks out of the month, it is okay to so severely undertreat it? I don't think so. And I truly don't understand what is so difficult to understand about my cycle of pain. It's worse in the second half of my cycle just as it's been for many years and just as it is for many women with endometriosis. Perhaps, part of the problem is that it's pain doctors, not gynecologists, who end up prescribing this medicine (not that the obgyns. I've seen were ever helpful to me in the years I saw them for pain relief, they wanted nothing to do with prescribing pain meds and still don't)?

Now, I am slowly coming back after the severe pain and illness and I'll have a few days where I don't feel quite as bad as I have been. It is up to me to fit in as much as I can during these next few days, despite how hard it is for me even in the "better" days, because they will again be over before I know it.

What about you? What is your cycle of pain? Does your pain vary according to different factors? How do you deal with variations in your pain, and how do your doctors respond to it?

Thursday, February 1, 2007

New Study Equates Chronic Pain with Reduction of Brain Size

According to a recent study, pain causes the brain to age prematurely. The brains of chronic pain patients in the study had aged 10-20 years beyond normal! A 5-11% loss of brain size was noted in these patients (the brain shrinks as it ages). Not good news for those of us who suffer from chronic pain (but, a great explanation for the "brain fog" I've been suffering from lately)--and yet another reason why getting adequate treatment for pain (as many know, that is often very difficult to do) is so important.

Source: Opinion250

About Me--My Health Challenges Story and Medical History

This is a summary of how I went from a fully functioning (though often ill), working adult, to a chronic pain patient disabled by the symptoms of illness.:

Though I've had debilitatingly painful periods since adolescence, I did not experience daily endometriosis pain till the past several years. First, my premenstrual pain worsened and lengthened, until it eventually began lasting about two weeks per month, getting worse as my period approached. Then, I'd have to weeks of normalcy, until the next cycle.

From the start, I was forced to use pain medication for the period pain. When my pain extended to two weeks, I was told by my doctors (who were adamant about avoiding prescribing narcotics) to take high doses of non-steroidal anti-inflammatories (NSAIDs) every few hours at the first sign of pain until the pain ended. They recommended this even though they knew the painful time period lasted two weeks. They did not once warn me (nor did the pharmacists or the prescribing information) that this could lead to stomach problems. Eventually, because of these high doses of NSAIDs, I developed a gastric ulcer in my twenties that did not go away for many years, despite treatment (I did not have the H Pylori bacteria that often causes ulcers, and mine was most definitely caused by this medication).

At some point, my pain worsened again in intensity and length. The break from pain I used to experience for about two weeks shortened and shortened until it was nonexistent. With severe daily pain, and about double that pain during and just before my periods, managing my life became increasingly difficult. I had always missed work during my periods (starting from my school years when I had to stay home for days during that time of month), and that had always been a problem for my employers (one I couldn't do anything about, and I couldn't understand why I was being reprimanded for a medical problem I couldn't control--I don't think had it been anything but a woman with "supposed" menstrual "cramps" that this would have occurred, but that's an issue I'll write more about another time.) But with the advent of the daily pain, I began missing work regularly and really struggling to keep up and fulfill my duties. Life became only about two activities: pushing myself to make it to work or laying in bed in pain (despite medication).

Though my pain was so much worse and now a daily state for me, my doctor did not want to increase my medication. In fact, she wanted to take away even the medicine she'd been giving me for years to control the period pain and some of the premenstrual pain. I had been taking that medication for 10-15 years! The truth is the dosage was so useless by that time with my pain so much increased that I found the prescription she'd been giving me to be useless anyway. I insisted on a referral to pain management, and wanting to stop prescribing my pain medication altogether, she readily complied. That is when I finally got some medication strong enough to at least partially affect my pain.

Not able to work any longer, I applied for an extended sick leave from work and was approved. Thankfully, I'd had the forethought to sign up for a disability plan at work when it was offered to me (I'm very cautious about things like that, even though until it actually happened--and even then I had a hard time believing it was really happening to me--I would never have guessed that I'd suddenly begin to suffer from disabling enough daily pain. It just wasn't the future I expected for myself, but who really does expect that type of future?). I was sure with that by working with my pain management doctor during my sick leave, I'd get my pain under control and be back to work in a few months. This never happened. I continued to not get better and my pain was only slightly under control on occasion.

My short term disability plan kicked in when the sick leave ended. Two surgeries and many treatments and one year later, I was still not better and not back at work. In fact, after the surgeries, I felt even worse, with adhesions now also being a problem for me, among other issues. I applied for long term disability through my private plan from work once the one year, short term one ran out, and was approved. I had one more surgery that was the last resort for me, and it, too, did not work. It also, like the previous surgeries, worsened my pain.

That is where my story currently stands. I am working to maintain my disability and desperately trying to figure out how to live life with a disability, while home alone all day and able to do little for myself. I am struggling with financial issues as a result of being young and not able to work and of course am dealing with plenty of emotional and relationship issues (with friends, family, and even acquaintances) as well. I am doing my best to be proactive about my situation and starting this blog is one of the ways I'm doing that.

If you'd like, please share your story, about your health challenge (or the challenge of a loved one--if they don't mind). I would love to post your story here (as long as it's well edited and checked for typos, etc., and seems appropriate to the tone of this blog) if you're interested in sharing it. Or, you can comment with your story, or a link to your story on your or someone else's blog, too.

Eat Your Veggies to Reduce Endometriosis Risk

"Women may be able to lower their risk of endometriosis by eating more fresh fruit and green vegetables," a European Society for Human Reproduction and Embryology study says. "But, eating red meat and ham appears to increase their risk."

By this logic, I should be one of the last people to have been plagued with endo, then. Since I've been a vegetarian for nearly 15 years and have had a diet strong in fresh veggies and fruit. Still, the recommendation is nothing but healthy, so following it certainly can't hurt, even if it ends up doing nothing for the endo. Bring on the leafy green vegetables!

Source: Science Blog

Introduction to This Blog

Though I do maintain a personal blog, I wanted to create a separate space where I can discuss issues related to the health challenges I have been facing. I have heard from others who are in similar situations as I am medically, and I hope this site will be a resource for them as well.

Focusing the entire blog on health challenges and their effects on the rest of our lives will allow for more commonality among the readers and contributers. I say contributers because I hope to eventually be able to hear from others who are experiencing serious health challenges that affect their lives and to be able to create a forum to help and support one another. I hope the site will evolve and the focus become ever more clear as time goes on.

My vision for this blog is that it will be focused on health challenges that are chronic, disabling, or that severely restrict the sufferer's life in some way for the long-term. Though, of course, other types of health problems present equally significant hardships, I'd like to keep the focus of this blog to health problems that have severely impacted the patient's life and that are not expected to quickly disappear. Those with ongoing, disabling conditions do have some different experiences from those who have a serious illness, but one they know they will be rid of in the near future. Knowing you likely have to live with serious limitations your whole life can create a whole new set of issues.

Perhaps over time the scope of this blog will widen, but for now, I plan to keep it on-topic in the way described above. I'm open to suggestions and questions. Since I hope for this to be a blog with interaction from others, I am certainly willing to consider changes to my vision over time.

Sometime in the next one or two posts, I'll introduce myself and some of the health issues I am dealing with.

Please feel free to comment. I will also be setting up an email account for this blog soon so that I can receive private messages that some may prefer not to post in the blog comments.