"Courting" a New Family Doctor

As many of you know, I moved last year to the point where my family doctor is now over an hour away. We are planning to move again shortly which will take me likely even further away, so I've decided that it is time that we find ourselves a new family doctor somewhat remotely even near to us. In Ontario, finding a new family doctor can be as elusive as the search for the Cardbury Caramilk mystery, in many of the "smaller" cities, it just doesn't happen. However, I will need someone to go to for the Well Baby checks when the baby arrives, as well as someone for just the everyday stuff.

We are being courted by a new family doctor. Our meet and greet date to determine if we will continue dating is set for next Thursday. I'm pretty nervous since we have to fill out a whole whack of paperwork prior to the appointment which includes listing all of your surgery dates (ummm, too many for the tiny box they provided), all of your diagnoses (again, too many for the space provided) as well as specialists you have seen, which I'm sure will run a few pages as well. From there, the doctor gets the decision as to whether we are candidates for his/her practice.

I like to think of myself as a GPs dream come true, I'm already connected with every type of health professional under the sun (although a cardiologist may be needed in my near future), and all I really need from him/her is to have someone to coordinate my care. Someone with whom the professionals in my life and in my children's life, can communicate. I'm growing more nervous by the day that this isn't going to happen. I guess we will know shortly enough as to whether we get to keep on dating!

Parenting and Illness: part 2

I recently wrote on the topic of how chronic illness has affected my parenting, which you might want to read first: here. While having a simple illness can have an effect on our ability to be "fully present" for our children, for chronically ill people, this is something that they must navigate daily. Chronic illness has a profound effect on those who suffer from it, as well as the family, including children, who live with the person.

Being All That We Can Be

Society continues to exert a tremendous amount of pressure on us to be the best parents that we can be and to live up to some sort of society created standards. We are bombarded by media advertisements on products that are "sure to make our children happy". Many magazines publish articles on how to be more effective as a parent. No matter what is going on in our personal lives, we're expected to meet these standards or face the consequences of having an unhappy child. However, it's not quite that simple. Children do not require products to be bought in order to ensure their happiness, just as each individual will have their own way to parent their child. Child development books speak of the need for parents to be responsive, genuinely caring, provide the essential needs (food, water, shelter, clothing) and to be unconditional in the love that is demonstrated to their child. All children act up sometimes, and it is not up to society to judge us as parents and label us defective if our children have a meltdown in a public place. This certainly does not mean that we are horrible parents. If we give our children the basic needs, it provides the foundation for happiness to arise from within the individual.

Some of us knew going into our pregnancy that we were chronically ill, others may have developed their chronic illness after the birth of their children. One thing is certain; chronic illness does impact on our ability to be all that we can be for our children.

The Depression Factor

Many chronically ill patients will experience some degree of depression during their journey with illness. It's difficult to be happy and upbeat when you experience pain and other symptoms that interfere with your quality of life to a great degree. Who wouldn't develop situational depression when told that everything they are physically experiencing is in their heads? Or that all they need to do is live a little? Who wouldn't be frustrated with the constant shuttling back and forth between doctors? Or when the promise of a new treatment fails? It's so easy to fall into the world of negativity when we deal with chronic illness. But we must look for the positives. What has this experience offered to you? What opportunities for learning more about yourself and your strength has it opened up? What life lessons are to be learned from this experience?

Many parenting books talk about the effect that stress and depression have on our ability to parent and on our children themselves. For example, children themselves may develop anxiety and feelings of sadness in reaction to a parent's depression. One of the parenting programs called "Kids have Stress too!" talks directly about the correlation between parental stress and children's anxiety and stress levels. There could be many ways that the stress in transferred but the important thing is to realize that it is a possibility and to try to "buffer" the effects of your personal depression and stress from children. Easier said than done.

The Guilt Factor

How can a chronically ill person not feel guilt over the fact that they will likely never be viewed as "the perfect mom" in our society? Many parenting articles have been written about the myth of the perfect parent, and how this effects our own expectations of our self. We cling to an image of the perfect mom; caring, happy, and ready to drop everything at the instant that our child approaches us. We want to be able to do it all; work, housework, and keep the needs of our family met. And yet the more we strive, the more these ideals seem to slip away from our grasp and we start to feel the guilt over our limitations. The guilt factor can lead towards us disciplining our children in a different way, such as allowing them to do something they shouldn't because we have been ill. Or needing to buy them something extra special to make up for what we couldn't do. During my son's last month of school, I had the opportunity to go on a field trip with his class to the zoo. Unfortunately, I've been on modified bedrest due to pregnancy complications for quite some time. I was still wracked with guilt over not being able to go with him on this trip. Yes, the guilt factor is a big one for us chronically ill parents.

Our Children

Regardless if your illness started before or after you have had children, your family has had to adjust to having a "sick" member. Our children have seen us at our worst, and sometimes for a rare amount of time at our best. They have witnessed our lows, our frustrations, and our sadness over not being able to cure ourselves. When our children are young, such as in infancy and toddlerhood, they do not understand that the parent is ill and is working hard to get better. When they do reach the age to understand that we have an illness, such as at the beginning of school-age, children develop a natural fear that something bad might happen to us. It's completely natural for children of the age 4-6 to worry about one of their parents dying. When my son witnessed me passing out for the first time, he has thought that I was dead. It's a terrifying thought for any child and can induce a lot of anxiety. Children may also begin to take on more of a parental role in the house by performing duties that would have previously been done by the ill individual. Older children can begin to understand and process what it means to be ill. while they may still have their worries, the fears of losing the parent (unless they have a terminal illness) are generally lessened. They have adjusted to the "new normal" and may even begin to develop resentment towards the ill parent for not being able to do everything. This resentment phase can switch on/off through the adolescent years.

Coping Strategies

It's important to have some strategies for coping that can buffer the negative effects that chronic illness may have within the family. Here's a few ideas, in no specific order;

1) Talk about your illness. You might as well address the elephant in the room. The reality of the situation is that you are ill and have certain special needs. It's hard to make younger children understand that you may need to take some amount of time during the day to address your special needs. But attempting to explain your illness(es) in a way that is age-appropriate can help to reduce the worry that there is something really wrong with you. For endometriosis, I have told my 5 year old that "mommy's cells got mixed up roadmaps and have decided to stick to places that shouldn't be which is why mommy is so sick". One day when he is older and knows more about the body, I can slowly introduce him to a more direct explanation. However, the important point is to have an honest and open conversation about what is going on with your health. This also allows the child the opportunity to keep an on-going discussion about his or her concerns about the situation.

2) If depression is an issue for you, seek medical help. You do not have to go through this alone. There are millions of people who live with chronic pain daily. Perhaps you just need someone to talk to about the situation or maybe you might need the help of anti-depressants, the fact is that help is out there for you to use if you feel it might be beneficial.

3) Re-examine your expectations of your self. Do you expect to live up to that image of the ideal mother? What would an ideal mother with your specific illness(es) look like? What are the most important things to accomplish today? Tomorrow? Next week? What is realistic for you to be able to do? Are there people in your life who you can delegate out other responsibilities? What can you do with your children?

4) Entering the search for the Positive. What has your limitations taught you about yourself? Is there something that you can still do well despite your illness(es)? Is there any lesson that you have learned from the various experiences? What would you tell someone who asked what the easiest part of having your illness is?

5) Sometimes love really is all you need. Children tend to thrive in situations where they feel accepted and loved. It's natural to lose our cool at times, especially when we are not feeling well at all, but everything seems to melt away when we use the three little words "I love you". I firmly believe that one of the reasons that hugs and kisses can make boo-boo's better is because they are given with love and good intent. It might not take the pain away but hearing I love you and saying I love you can help to make the day brighter for all.

Parenting and Illness: Part 1

My friend Jeanne of ChronicHealing.com has recently had a guest blogger, Stacy, writing on the priorities of life when it comes to illness. In this post Stacy writes of her family having to adjust to the reality of life with a chronically ill family member. Stacy's post really got me thinking of my own parenting when it comes to my son.

J. has never known a completely well me. My symptoms of endo had long pre-dated his arrival into this world, and fully complicated things after his arrival. He has seen the interior of doctors' offices way too much for any one person already in his young life. It's sad to admit that this has become his "normal".

I was diagnosed with stage 1A endometrial cancer 3 months after my precious miracle's arrival. While it was in its earliest stages, one can't help but think about the what-ifs that go along with this type of diagnosis, and those first days before I adjusted to this "new normal" were quite wrapped up in all of these thoughts. Realistically, I knew that there was very little chance of me becoming terminal, at least at this point, but these thoughts are what your brain seems to automatically jump to when you receive such a huge diagnosis. Not only did I have to consider my treatment choices along the lines of what I was willing to pursue (hysterectomy vs. no hysterectomy, etc), but now in making any decisions I had to also think of this completely dependent person. Every treatment decision and follow-up doctor's visit were always opportunities to second-guess whether what I was doing was "right" in a world where there are few "right" answers. J. has now been through 2 laparoscopic surgeries and countless D&Cs with me. And that's just the surgeries. He's seen me vomiting to the point where I couldn't leave the floor of the bathroom, witnessed me writhing in extreme pain and not able to comprehend why, and just generally struggling with whatever each new days throws my way. Even worse, lately he has witnessed me faint and became terrified I had died. He didn't tell me that he thought this, but told my parents later on, which to hear drove a stake through my heart. It's painful to think about the natural fears of a child being multiplied to a great degree in such a manner.

Throughout all of this, I have always tried my hardest to give J a "normal" childhood existence. I am unable to run around and be physically active with him, which is a void that my dad and now B. try to fill. I am unable to go camping with him as sleeping on an air mattress might mean days of pain for me afterwards. Again, I've entrusted my father into taking him camping.

I have a firm belief that it is the overall experiences a child has that goes into making them who they are. A child needs to experience unconditional love, respect and genuine emptahy in order to become an emotionally "stable" individual. These are gifts that we can give no matter our abilities. In fact, when you look at the topic of basic human needs; food, shelter, clothing, genuine love - these are things that we can give our children no matter how we are feeling.

J and I have been to countless drop-in playparks together, we've frequented the zoo (when I was able to) and we used to really enjoying going to the indoor amusement park together. We've seen Sesame Street Live, the Backyardigans and have gone to the movies on "dates" before. And the reaction that I get from taking him to these big things, pales in comparison to the reaction I get to playing something like Sorry, or Bingo on our living room table. Just a trip to Webkinz on the computer, or viewing the live webcams of animals on the computer can bring about "you're the best mommy in the world" phrases.

J has learned some lessons from my experiences that he will find of great value when he gets older. He has learned patience, that sometimes you must find ways to entertain yourself when the doctor is running 2.5 hours behind schedule. That sometimes you must wait up to 6 months or longer to get a special appointment. He has learned patience with other people, that sometimes we can't always meet our demands right away.

He has learned respect for other people's abilities of all types. He understands that "mommy can't do this" but he never criticizes. He is aware of what he can and cannot do because of his illness (epilepsy). He thinks nothing of it to see a person in a wheelchair or with an IV pole. To him, this is the "normal" and how we get better.

I've attempted to keep some level of normal in his life, and yet I still feel the guilt at times. I see other parents and how they are with their children, and I long to be that mom who is able to push their child for what seems like an eternity on the swing at the park. I long to be that mom who totes everything around in a back-pack and whips out things for an impromptu picnic at the park. I long that my children didn't have to know how to call 9-1-1, even if it is a vital skill. And yet, I wouldn't give up the opportunity for life lessons that my illnesses uniquely provide.

When asked "how do you deal with being in constant pain and having children?" or "How can you look after children when your own health is precarious?" I look deep for the answer but the answer is always the same "I just do". I do what needs to be done to make sure that their needs are met, everything beyond that is just icing on the cake.

The Fertility Journey: Dreaded Thursdays

Thursdays have come to mean a day of dread for me. Not only do I get the pleasure of having the IV to treat my low sodium levels that are causing me to pass out, but I also get a non-stress test, get to be weighed to find out exactly how much I am gaining (gasp), and yes, get to speak with my high-risk doctor for results of testing.

This past Monday, I had to have a cortisol blood test done on me, and she decided to do my regular bloodwork at the same time. Cortisol is typically called the stress hormone, gee, just having the bloodwork done for some people can induce stress levels! Anyway, in pregnancy, too high of cortisol levels can be an indication of individuals who are likely to give birth pre-term. Cortisol is also associated with some infancy issues such as colic and anxiety.

I got the results of this test on dreaded Thursday. My cortisol levels are "extremely" high. I am to take it as easy as possible, but I have no idea how much easier you take it than laying around the house since I can't drive anywhere! High cortisol levels are also associated with Cushings Disease, which I have quite a few of the symptoms for. She will continue to monitor the situation after I give birth.

Dreaded Thursday continues with the results of my latest round of thyroid testing. My levels have slipped a bit lower, indicating a move towards what she initially thought: Graves. It isn't surprising. Many of us with endo have thyroid problems. So I have a script for some synthroid. She is hopeful that after the pregnancy the thyroid will return to normal functioning.

Dreaded Thursday continues with her poking (okay she was gently touching) my back which has been in excruciating pain for over a week now. The verdict is that I have torn a spinal muscle. Umm, is this possible when you don't do any physical activity?!?! I have a prescription for a TENS unit, as well as orders to seek out massage therapy services, both of which my extended insurance through work covers, luckily.

Dreaded Thursday, oh how I wish you didn't exist! Luckily I broke the scale in the labour and delivery unit and the nurse couldn't find another so I got away with no weighing in. See some people have some luck!

Dreaded Thursday has now changed to Fabulous Friday and I am going to be spending it watching movies and eating popcorn with my son. What a great way to spend a day that is too hot to do anything else! Not that I'm supposed to be doing anything else....

Chronic Pain and Addiction

How original a title, but ironically the pain I am in at the moment is preventing me from being able to come up with something a little more attention grabbing. For the past two weeks, my pain levels have been through the roof, first with my fibromyalgia flare-up, for which I was finally given permission to start back on my Lyrica, and now I'm having severe back pain. When I say severe, I mean it took me 1hr and 45 minutes to get out of bed yesterday. So all this pain and some other things which I'll get to in a minute, have inspired me to write this blog post.

I have blogged on the topic of pain twice, once on coping with the emotional aspects of pain and then on the topic of coping with physical pain. Lately I've been thinking about another aspect of pain, the idea that we may become addicted and the role that plays in how individuals with chronic pain use their pain meds.

The Idea of Addiction

Let's face the truth here, many people who suffer from chronic pain regardless of source are given short-acting opiates to deal with the pain. Short-acting opiates can be anything from Tylenol 2's to Percocets, Vicodin, etc. Unfortunately for us, there has been a huge increase in the number of reports of abuse of these medications. Perhaps it's because pain is a subjective thing. When you report pain to your doctor, they can't tell visibly that the pain is there, they can't deny that you are feeling pain. Thus it would be easy for a person seeking pain meds to go to a doctor and "pretend" the pain symptoms are there just to get access to the drugs. Not to mention that drugs such as percocet, oxycodone, and Vicodin have a high retail value on the streets. It's much easier to hide this type of addiction than it would be to hide an addiction to heroin or cocaine.

Due to the rise in abuse, doctors have become more aware of the dangers in prescribing these meds. Specialists tend to not want to prescribe pain meds as they usually don't see you on a regular basis to keep tabs on you. I had one doctor tell me that it would unethical of him to prescribe me anything for my pain but that he would send the recommendation back to my family doctor. But what if your GP didn't agree with the specialist's recommendation and denied it all together? It's a real problem.

A Chronic Pain Patient's Nightmare: Prescription Addiction Assessment

Prescription addicts are a chronic pain patient's worst nightmare. How so you ask? Well due to the individuals who abuse prescription narcotics, many individuals with legitimate needs for pain medication, cannot have access to the type and/or amount they may require.

An addiction is a psychological issue where the person is dependent upon a substance for their day-to-day functioning. Sometimes it's a mild addiction where the person can function and think about other things other than how to get their needs met. However, in the throes of addiction, individuals are motivated to find how and when their next source of meeting their needs will be. This becomes drug seeking behaviour. Doctors have come up with a list of common drug seeking behaviours which is often used in determining whether our complaints are legit or whether we are just looking to "score". This list has been put into the form of a Risk Assessment which the doctors can use to determine if we might be "drug seeking".

We can fit the profile of those who abuse prescription drugs. We complain of constant pain, and many health practitioners still believe that we are exaggerating. This is most likely due to the myth that us endo patients are nothing more than people who cannot handle normal menstrual cramps. Many of us who have been "around the block" long enough, know which prescription drugs are effective for us and we ask for them by name. This is listed as one of the red-flags of a drug-seeker. We are penalized for knowing too much. And many of us, despite our illnesses are still able to work, which means that we have the means to feed our addiction. Let me give you a personal example of how this has affected me:

I have been taking prescription narcotics on and off since I was in my mid-teens. I am allergic to NSAIDs (non-steroidal anti-inflammatories) which is the first line of pain meds that many doctors would prefer to use. So when a doctor offers me NSAIDs I will politely turn them down and say that I'm allergic to them, which is all too easy for an addict to say. It would be unethical for a doctor to prescribe you a medication for which you are allergic, so there is really no way of proving this statement. As I have taken so many narcotics, I tend to know what works best for me. I don't believe that this is drug-seeking a particular drug, but I think that it's useful knowledge that can save time and frustration over prescriptions that don't work. Unfortunately, when I say by name what works, I'm often met with resistance. Tylenol 2's or 3's are essentially useless to me, especially after being on and off oxycodone (percocet) for the past several years and having been on a high-dose fentanyl patch. Thus, when I go to the ER with pain complaints, and shoot down their first suggestion for either Naproxyn or Toradol, it's no wonder that I've been flagged as a potential drug seeker. Yet all I want, all anyone wants, is relief to their pain.

Addiction VS Tolerance

As said above, the addict is motivated to seek drugs based upon their psychological need. This is quite different than a naturally occurring physical dependency or the increase in pain medication tolerance levels that many of us chronic pain patients experience. Research has informed us that if you take any medication long enough, your body can become physically dependent upon it. I have experienced this first hand with my two year usage of fentanyl. This is a very strong drug that is given quite a bit to cancer patients. I had switched pain doctors and needed to come off the fentanyl patch. For two weeks, all I could do was lay in bed, shake and pace. I honestly didn't know whether I was going to make it through. That is the physical addiction. With short acting pain meds, research has also informed us that we tend to become used to the drug and require more of it in order to get the same amount of relief. This is what is known as tolerance. And it is naturally occurring all the time.

Chronic Pain Management in the Face of Addiction

As mentioned, many doctors have now become increasingly aware of the problem of prescription drug abuse and thus have limited their number of prescriptions that they give out. As a result, many chronic pain patients tend towards under-treating their chronic pain. The problem with this is that those pain signals travel through the Central Nervous System and over time, build up more and more pain receptors to match the number of pain signals. When the CNS is flooded with pain receptors, there is the likelihood that we are going to be sensitive to non-painful stimuli as a result of a hyper-stimulated CNS. Research has shown that chronic pain patients are less likely to become addicted to pain meds, as they try to conserve whatever pain meds they have left over in fears that they will not be able to get more for when the pain is even more severe.

I have experienced this in the past two weeks with my back, which I just found out is a torn spinal muscle. My doctor gave me a limited number of percocets, so I would use them scarcely. Even though the pain would be a 9/10, tears streaming down my face as I vomited from the pain, I would be thinking, "what if the pain gets worse and I need them more then?". So I under-treated my own pain. This is far from ideal pain management.

What really gets me is that I was approached by a lady who does services for people within their homes. Upon mentioning her pain to her customer, the customer, rather than offering her a tip offered her a bunch of pain meds. I think that this type of behaviour is a real problem and doesn't do anything to help out the image of those who are trying to access pain control through legitimate ways.

So what can we do?

We need to communicate with our healthcare team as openly and honestly as possible. Keeping a pain journal is a great way of showing the doctors that you take your pain seriously. For pain journals please see my post on coping with pain. As well, don't be quick to rule out your doctor's recommendations for alternative therapies. If you shoot down the doctors ideas before even giving them consideration, this can signal to the doctor that you aren't interested in trying all that you can do to relieve your pain. Consider going to pain management, sometimes it's best to go to the specialists who deal with what you have to put up with every day. Pain clinics exist for chronic pain patients to use. My posts on coping with emotional and physical aspects of pain have some good ideas for pain management as well.

Endometriosis and Sexual Identity

For my non-endometriosis friends who are going to read this, this is a glimpse into what it can be like for us women living with the disease which is intrinsically linked to our reproductive organs, and through that back to our sexual identity. As you may not be aware, one of the symptoms of endometriosis is painful sex. It could be pain during the arousal stage, during the act of penetration, or anything afterwards. The sad thing is, there is not too much written on this taboo subject as it's not "kosher" to describe our sex lives. However, our physical intimacy habits are often linked to our self concept, our self esteem and how we can express ourselves. If you're still brave enough to be reading this, kudos to you.

A Look at Our Human Needs

In looking at Maslow's Hierarchy of Human Needs we can see that under one of the basic needs we have in this life is sex. If we move up his ladder of human needs, we can also see that under psychological needs we have a need for intimacy. In a heterosexual relationship (I can't speak for homosexual relationships as I haven't studied them in depth), our needs for sex and intimacy are often combined into one. I have read quite a bit on how the male gender tends to express intimacy through physical actions (hugging, caressing, making love, etc), whereas females are more open to the verbal as well as the physical. I include Maslow's human needs as when we do not have these needs met, we are at risk of having a part of our self concept under-developed.

The Implications of having Endo on Sexual Relationships

The common place problem with women who have endometriosis is that the physical expression of love might be a source of pain. The physical pain of sex has implications for both partners. Several women in my support group have commented that the pain leads them to try to avoid sexual relations with their partners, and sometimes that their partners give up trying to initiate sex as they don't want to cause them pain. In my support group, I have met many women who fear the thought of making love, as they know afterwards that they can be in pain for days. It's hard to feel like a sexual being when you have to take a pain pill just to have sex or because you had sex. When the physical expression of two individuals love for one another is no longer possible, for some people it can feel like their partner is pulling away from them. When a man who expresses his love in a physical manner, is no longer able to express it, communication can breakdown between the couple and lead towards one or both individuals feeling "unloved".

For women with endo, it can be difficult for us to see that we are sexual beings. We can come to resent our reproductive organs for what they are putting us through. We might feel that we are "less of a woman" due to our disease, our inability to conceive and carry to term, surgeries that we may have had to remove ovaries or even having complete hysterectomies. Many of the medications that we try in order to alleviate our symptoms can not only lead towards a lowered libido but can also lead towards weight gain. Quite a few of the ladies in my support group have commented on how the weight gain has caused them to feel unattractive. Also, the physical pain itself can make us feel unattractive, and it is hard to "be in the mood" when you are in a lot of pain. A few women have also commented on how they fear that their partners may seek physical comfort in other places due to what they lack from us in a relationship. It's not a far stretch for sexual problems to lead towards communication problems and issues of insecurity in the relationship.

A Perspective on Dealing with Physical Intimacy

Sometimes we need to shift our perspective on exactly what physical intimacy is. Yes, we do tend to think automatically of sexual intercourse when we talk of intimacy, however that is only a small part. For partners who want to show their affection physically, gentle caresses even to the cheek can communicate feelings of love, as can being held close. Research on the power of touch have proven that humans require physical touch and that it may be a source of healing from a variety of illnesses, from cancer to chronic pain. Massage can communicate our deepest emotions which words can fail to describe.

On the Topic of Intercourse

To help with sexual intercourse, it is necessary to try to remain as relaxed as possible, and to think to yourself that this experience is going to be better than the last one. If we focus on how much it has hurt us in the past, it will tense up the muscles and make this experience an unpleasant one. It's always beneficial to start with a clean slate. You might also want to keep track of when you are in the most pain, both with positions and timing of the month. It's possible that certain positions won't hurt during a certain time, but might be more painful at other times. This is normal as the endo can cause internal swelling and the added pressure and movement can set off more pain. It might be helpful to invest in a good sexual manual to help with discovering new positions that might not be as painful as others.

The most important key to coping with this is communication. Let your partner know how you feel, find alternative ways of expressing your love, and keep experimenting with different ways of being with one another. Remember that this disease is only a part of you and does not define you, it does not make you less of a woman in any way, shape or form.

On the Topic of Strength, Courage and Super-Heroes

This post is going to be a bit different than my usual posts in that I'm not going to be focusing solely on my health or on any particular illness. I really want to talk about strength and courage. The inspiration that came to write this post is based upon recent conversation with my good dear friend Jeanne Endo of the blog Chronic Healing. If you haven't had the opportunity to read her blog, I highly recommend it as she speaks not only of illness but of the power of staying positive, something that is very difficult for us who are chronically ill.

Another source of inspiration to write this blog has lately been my support group: Goddesses of Endometriosis, which has just reached 1,000+ members. I regularly receive notes that tell me that I am a source of inspiration to people, that they admire my incredible strength and determination to get through even the most darkest places of my life.

The last inspiration for me to write this particular piece came to me as I was watching the Michael Jackson memorial yesterday. I got to thinking, if I pass on, what will people say about me? Will they recognize the contributions that I have tried to make in attempting to help people? What kind of legacy will I leave for my children? Will my children know of the difference that I have made in someone's life?

I find it difficult to respond to the letters I get that talk about my strength. I do not really recognize the strength I have within myself, especially when I struggle just to make it through each day. How can I be a source of strength when it takes everything within me just to get my feet onto the floor at times? I think that the strength that I draw upon is the determination to live each day well. To me living each day well means making a footprint or planting a seed somewhere along the way which is going to help people. After all, we each need seeds of hope that will one day blossom into beautiful flowers. If I can make a difference, however small, in someone's life, than I have lived well that day. I strive for this each and every day, to make a difference. Do I succeed? I'm often left wondering the answer to that question. Sometimes I know through personal contact with individuals that I have made a difference, other days it is just the hope that lives within me that my words have reached out to touch someone.

I'm going to talk about my sources of inspiration here. These are sources that I find to be incredibly touching and from where I draw my courage to face each day. For anyone who knows me well enough, they will know that I am a reader. I constantly have 4-5 books on the go.

My first source of inspiration comes from Mitch Albom's "Tuesdays with Morrie". For those who haven't read the book, essentially, it is about a special friendship that has developed between a terminally ill professor and his college student. Morrie teaches his student very important life lessons on a variety of topics like marriage, culture, family, emotions, etc. I'm going to share a quote from the book:

"Mitch, you asked about caring for people I don't even know. But can I tell you the thing I'm learning most with this disease?"

"What's that?"

"The most important thing in life is to learn how to give out love and let it come in".

What a beautiful passage. Even now typing it out I have tears misting in my eyes. But the words ring true. Each one of us has a gift inside of us, a gift that we can open up and give to others at any time we choose. It's a gift of gratitude, of hope, of friendship and most importantly of love. We need to feel love. It's one of Maslow's points on the hierarchy of human needs, each individual needs to have a sense of feeling loved. A quote from Moulin Rouge is "It is better to have loved and lost than to have never loved at all". - Originally said by Lord Alfred Tennyson. I like to think that in my work with my support group and with the people I randonly meet with chronic illness, that I give out the seeds of love. I may not say it as often as I should to the people I am close to, but I have love for each and every one of them in a certain way. Each person I have met has left a footprint and a seed in my heart.

The second source of inspiration for me comes from a book I know not many people have read. I stumbled upon it rather by "accident" one day, but I think it was more due to fate that it popped out at me as a book on sale at Chapters. It is called "We are all the Same" by Jim Wooten. For those of you who haven't read this tear-jerker, it is about a woman, Gail Johnson - founder of a hospice for AIDS patients in Africa, who becomes a mother to an infant child born into poverty and afflicted by AIDS. Obviously, the story touched me in several ways which I won't go into right now, but the main point I want to make about this beautiful and touching relationship between Nkosi and his newfound mother, is that she made a difference in the lives of many. She defied the race barriers and worked to defeat the myths of HIV/AIDS that is so prevalent in South Africa during a time when it was a very politically charged topic to bring true awareness about this disease. Gail never stopped trying to bring awareness despite the adversity she faced. Nkosi defied the odds of survival and lived for several wonderful years with his mother, and as I see it, her strength and courage to keep him alive and well is what encouraged him to live longer. Gail Johnson is a true super-hero in my books.

Last but not at all least, is a very well known gentleman who epitomizes the words strength and courage: Randy Pausch. Although he will never know it, Randy's words have left an unmistakable footprint in my life. Randy knew that he was facing a terminal illness, but used his remaining time to the fullest. Leaving a book, Last Lecture, as a legacy for his children. For those of you unfamiliar with this book, I either encourage you to read it, or you can watch the movie on youtube here: http://www.youtube.com/watch?v=ji5_MqicxSo. It is an amazing piece of work. Randy has left his children with all of the life lessons that he wanted them to know, but will never have the chance to teach them in person when the time comes. Some of you will know that I have written letters to Jacob while I was pregnant with him and throughout his young years. I have many things that I want to share with him. I figure that this is one of the greatest gifts that I can give to him should something happen. Not that I plan on my death as being imminent, but we never know when we shall pass on. Randy Pausch, you are one of my heroes and likely a guardian angel to us all, reminding us to live well each day.

These are my super-heroes. People who I believe embody the words strength and courage. I do not see myself in the same class as these people. One day I would hope to be remembered as such, but it still feels to me as though there is a lot of work to be done. I want to do more, I want to reach out to more people, in short I want to make a difference.

Will my children remember me with the same fondness as I have for these individuals? I sure hope so.

Endo and CMP

I'm in desperate need of a distraction as I sit here in pain due to a severe fibromyalgia flare-up. So I've decided to write today on the topic of Chronic Myofasical Pain (CMP) and it's connection to endo. If anyone reading this also belongs to my support group, you will know that I often speak of the possibility of people with chronic pain issues to have a diagnosis of CMP, but I don't believe that many people outside the circle who have received this diagnosis understand what it is and what it means. I hope this helps!

CMP: An Introduction Using an Analogy

Chronic Myofascial Pain (CMP) can best be described by using the following analogy, otherwise the explanation can get too technical and bogged down in details to make much sense. Picture a piece of raw chicken breast. The actual chicken breast itself is your muscle, but the thin clear stuff on the surface is what is referred to as the myofascia. The myofascia line all of our organs, separating them from the bone but holding them in place. It often has a stretchy nature to it as the muscle must have some mobility in order to stretch and contract as it should. In CMP what happens is that the myofascia becomes stuck between the muscle and the bone, creating tension and eventually effecting the range of motion that that particular muscle will experience. You have no doubt heard of people talking about having a knot in their muscle, which is actually the formation of a taut band of myofascia that has developed a contraction knot, or what is technically known as a trigger point.

The Link Between Trigger Points and Endometriosis

Some research suggests that trigger points develop easier in damaged tissues. Women with endometriosis tend to have tissue damage in the pelvic/abdominal areas, especially as the disease causes the tissues to become inflamed and the cells to start bleeding. When we curl up in the fetal position due to the pain, we are also putting pressure on certain muscle groups. This type of overuse can also lead towards the development of trigger points.

Trigger Points: A Pain in the $!$

Once the myofascia has developed a trigger point, the muscle may become stuck and then have a limited range of motion. The trigger point may cause the muscle to be locked in a state of contraction or expansion, limiting the range of mobility that the muscle has. The surrounding muscles then try to compensate, but with the extra pressure on them to do the work of the initial muscle, it too may eventually start to develop a trigger point. In this manner, the pain may cascade down throughout the body as each muscle group slowly becomes effected. I often have trigger points develop in my shoulders and neck, which can be a trigger for my migraines. It can also trigger me to have lower back pain. The trigger points throughout my pelvic and abdomen also create a lot of pain in that area and send pain signals through my lower back and down through my legs.

CMP is NOT Fibromyalgia

While CMP often goes along with those who have fibromyalgia, they are not part of the same condition. With fibromyalgia a person develops tender spots; spots that when touched even sometimes with the lightest amount of pressure can send abnormal amounts of pain rocketing through the body. However, the pain tends to stay localized to that particular point. Fibro pain also tends to be widespread throughout the body, affecting both sides.

With CMP, activation of the trigger point often sends shooting pain throughout the body's muscle groups. You might have trigger points only in one part of your body, even though the corresponding muscle groups might be affected by the radiated pain. However, this is not the same as with fibromyalgia.

How do they Treat CMP?

Relief of the trigger points can be achieved in a few different ways. Massage therapy, although it might be painful as the muscle groups learn to relax again, can help to reduce and relieve the trigger point contractions. There are a number of Self-Help Trigger Point manuals available at the bookstore which can show you how to do self massage techniques on your trigger points. Afterwards, the use of moist heat can allow the muscle to relax. It is vital not to overwork the affected muscle group. Some doctor's also believe that physical therapy might help with trigger points, especially pelvic floor therapy. Gentle stretching exercises are also generally recommended in between treatment sessions.

I go for trigger point injections, which is one of the quicker ways to escape the misery that trigger points can cause. My pain specialist uses a muscle relaxant along with a freezing medication, to inject directly into the trigger points. As he inserts the needle, I can often feel the knot actually jump, which is an odd sensation. I can honestly say that this has helped me immensely, especially with my migraines. I've had a few of the "less deep" trigger points in my abdomen and pelvic area also injected which has brought relief from some of the pelvic and abdominal pain.

If you find yourself in quite a bit of pain, it might be worthwhile to investigate whether the pain is being amplified by CMP. There are estimates out there that over 80% of individuals with a chronic pain illness will also have CMP.