Off-Topic: Epilepsy Awareness Day - March 25, 2009

December 5, 2006 was a day that changed my life forever.  Little did I know at the time that this day would be the start of a long rollercoaster ride that would have a serious impact on everything that would happen from that day forward.  Jacob, my then almost 3 year old son and light of my life, had his first seizure.  

It all started innocently enough, Jacob looked like he was coming down with something and was irritable for it.  But the screaming had a different "quality" to it.  He would shriek for like 20 seconds and then would almost drift off, only to repeat the cycle over and over again.  When he fell asleep in my arms at about 6pm that night, I thought "good, let him sleep it off and I'll take him to the family doc in the morning if he's still sick".  By 8pm he was still sleeping.  In fact, he hadn't really moved all that much in terms of changing positions in my arms.  I went to change him for bed and he didn't wake up.  I tried calling his name, with no response.  I tried scraping my fingers along the bottom of his feet with no response.  Jacob was in what they medically call a "post-ictal" state.  I call it plain terrifying. 

 I made the drive to the hospital within 3 minutes, running a stop-sign and red light on the way.  I was met at the door by a security guard who took my limp son out of my arms and rushed him through the double-doors of the ER where a team of doctors immediately started working on him in the hallway.  He was hooked up to every machine going, an absolutely horrifying vision for any parent to see.  All the regular tests came back normal, no blood sugar problems, no sign of trauma, etc.  It wouldn't be for a few more weeks that we would get the results of having an "abnormal EEG suggestive of childhood epilepsy".

Jacob has for what seems like forever had "night terrors".  When we met up with our neurologist we found out that his night terrors were actually one of his presentations of seizures.  His sleep-deprived EEGs showed that he had quite a few seizures when he slept, mostly at that time coming from the temporal lobes, which explained quite a bit about his fear responses and his language problems (slurred speech, unable to find the "right" word, etc).  Jacob was put on Trileptal which helped with his night seizures for awhile, but we would have to go through regular increases in order to have seizure control.  For a few brief months I had my son back.

In September of 2006 Jacob started Junior Kindergarten.  He also developed occipital lobe seizures.  He would complain of visual distortions, seeing colors, seeing everything either larger or smaller than reality.  Obviously, for such a young little guy it was likely terrifying for him just as it was to watch him go through it.  He would beg for us to make the seizures go away, and then would tell us "nothing you do helps".  It was heartbreaking to say the least.  The feeling of not being able to help your own child is one that I don't wish on any parent, it's devastating.  Jacob was started on Topomax to help with the occipital lobe seizures, which started another long nightmare.

We had to keep increasing the Topomax in order to get better seizure control.  Unfortunately, Jacob did not do well on Topomax, or as some other parents of children with epilepsy call it, "Dopomax".  My bright child who was able to read short sentences and knew all of his phonetics upon entering kindergarten regressed.  He was unable to feel his bladder being full.  He was irritable.  But academically he suffered the most, he went down to being only able to identify a few single words.  His attention span was non-existent and it caused him to have ADHD type of symptoms.  His behaviour was simply off the charts.  He then started to become very aggressive with others, which led to him almost being kicked out of school and daycare.  We took him off this medication in February 2009 and he has improved so much.  I now hear how different of a child this is, that he actually smiles again.  I have my old Jacob back once more.  He's been put on Valproic Acid in place of the Topomax.

In June/July 2008, Jacob's seizures changed yet again, he started having more generalized seizures and also absence seizures.  A referral was made to The Hospital for Sick Children to evaluate him for potential brain surgery.  We had this done in January 2009, and it was like a miracle treatment, no seizures that week until after the EEG machine was taken off of him.  If only he could live hooked up to an EEG machine because apparently that's the cure for him!  This 5 day long test, exhausting for both parents and child, will likely be repeated again in the future.  

Jacob has adjusted to his "new normal".  He is able to explain his epilepsy to others as his brain sending out mixed up messages to the rest of his body.  For a 5 year old child, this is quite unbelievable!  He fears others catching epilepsy from him, but we regularly talk about how it's not something like a cold or flu, it's something that happens in your body without being due to germs.  He's very aware of his seizures and is thrilled when he meets others who also have seizures.  He's one brave little guy whose illness will only make him stronger in the end.  

Life for a parent with a child who has this illness also goes on, although a bit differently.  I'm very aware of what different activities might serve to trigger his seizures, and while I hate to limit him in these activities, I also know that there is no reason to subject him to these things.  We won't go to loud restaurants as he is sound sensitive.  If a store is playing too loud of music and refuses to turn it down, we leave.  Even Chuckie Cheese is difficult as he tends to get easily over-stimulated by the lights and sounds.  Going to the movies is difficult for him, the big screen poses a problem with a lot of light and color changes which triggers seizures.  Even though he really wants to learn to play hockey, I'm very hesitant to allow this because of the reflection of the lights on the ice triggering seizures.  I still sneak into his room at night and worry about his night-time seizures, and I'm almost always waiting for a phone to ring to tell me that he's had a generalized seizure and is on his way to the hospital.  It's a slow adjustment with a lot of paranoia, but I'm learning to relax.   I know that I can't stop them from happening, but I can make it easier for him.  I can help to avoid the known triggers and offer a little insulation that way.  One of his favorite things to do is amusement park rides and while I'm always aware that this can trigger them as well, a kid does have to be a kid sometimes.  This mom shall get through life with epilepsy as well.  

Pain And Suffering: A Buddhist Perspective

Pain: One of the most common symptoms of endometriosis and yet it remains poorly understood and accepted. Pain is natural, it is our body's way of telling us "Hey, something ain't right here! Pay attention please!". Endo causes physical pain in a few different ways:

1) The blood that is shed from endo cells each month sears the surrounding "healthy" tissues that it comes into contact with;

2) Prostaglandins are produced by the rogue endo cells. These are chemicals that cause inflammation and thus pain;

3) Endo cells can contribute towards the formation of adhesions, which can bind organs together and pull them out of place.

Those are among the more common explanations as to how endo causes the chronic pelvic pain that many women feel.

Iny my journey, I've encountered many a health care professional, as many of the ladies in my support group have also had the displeasure of encountering, who do not believe that this pain is real. That this pain is nothing more than "period cramps" and that us women who suffer from the physical pain of endometriosis are just more "sensitive" towards what is normal for everyone woman to go through. I must say, with a hint of sarcasm here "So, the internal bruising that I get each month through the side of my torso when my period begins is normal and doesn't cause me any pain?". Uh huh, and I'll get a Lexus SUV this year for Mother's Day.

What makes the pain of this disease so mystifying to many in the medical community, at least I feel, is that there is no connection between the degree of severity of a woman's endometriosis and her pain levels. I have met many women who have had a "single spot" of endo found during their surgery and who have been more or less bedridden. And then I have encountered many other women, who fortunate for them, did not discover their severe degree of disease until they had an unrelated surgical procedure done, such as an appendectomy or a tubal ligation after they were done having children. I think that most people tend to think of pain in relation to the severity of the condition, which is a myth that desperately needs to be destroyed in this case.

I know that many out there will disagree with my next part on the concept of suffering, however what I want you to take away from it is not any of the religious background but the concept behind what is being said. I have spent quite awhile examining my own "religious" beliefs, and the best answer that I can come up with that fits for me and my views is Buddhism.  Within the Buddhist writings there is a lot of mention of human suffering, which I have found helpful in getting me through some of the difficult parts of my battle.  

In "The Art of Happiness" by His Holiness The Dalai Lama, he writes "But there is a difference between physical pain, which is a physiological response, and suffering, which is our mental and emotional response to the pain".  He goes on to further ask "Can finding an underlying purpose and meaning behind our pain modify our attitude about it?  And can a change in attitude lessen the degree to which we suffer when we get physically injured?".  

I've suffered with this disease.  Who wouldn't?  The consistent and constant pain that many of us survive through daily.  The discrimination that many of us continue to bravely face within our society.  These are the things that suffering is made of!  There have been times, especially during my rapid withdrawal from fentanyl (Duragesic patch) that I was seriously going to die.  One of the things that has helped me to pull through is my desire to help other individuals learn more about this disease, to advocate for better treatment within the medical community and society at large, and to be able to help bring comfort to others who are living with this disease.  I believe that I have found an underlying use for what I've been through; to be able to share my experiences with others in order to help them brings me a sense of relief from my own "suffering".  It is the satisfaction of saying that I made a difference that makes all the difference in perspective for me and helps my mind to shift once more back from the state of suffering to the state of "living".  

To His Holiness The Dalai Lama, yes I do believe that in finding some meaning and purpose in our experience can help to alleviate our state of suffering.  It won't take away the physiological pain, it won't stop the disease from wrecking havoc, but it does help with our mindset and our attitude towards this experience in life in general.

The Fertility Journey: Admitted to the Hospital

why can't anything be easy? I mean, seriously, easy would be a nice route to take for once. I have a large corpus-luteum blood filled cyst on my right ovary that is causing some serious pain. But the more stressing point is that I am having severe, severe morning sickness to the point where I haven't been able to eat solid food for 4 days. The RE put me on Diclectin for morning sickness this past Tuesday but it hasn't helped with the nausea and vomiting. So I am on my way to the hospital to be admitted as per my RE's orders. He has called the ER to let them know that I am coming through and has also ordered one of the high-risk pregnancy doctors to see me while I am admitted. Let's hope that this can provide some answers (and some much needed rest!).

Not exactly how I planned to be spending my pregnancy.

The Importance of Diagnosis

Endochick had posted on her blog, Endometriosis: the silent life sentence, quite awhile ago in regards to the importance of diagnosis when you take into account all the various illnesses that can mimic the symptoms of endometriosis. In this case, Endochick had spoken of how her sister was suspected to have endometriosis but was actually diagnosed with cervical cancer. Not only does cervical cancer have similar symptoms as endo, but so do other gynaecological cancers (I have endometrial cancer and the symptoms are very similar, but ovarian cancer would also have similar signs. Other illnesses that have similar symptoms but different treatments would be pelvic adhesions, pelvic congestion syndrome, Poly-Cystic Ovarian Syndrome, and Interstitial Cystitis to name a few. Thus a diagnosis of endo is necessary in order to rule out other conditions and to receive the proper treatment.

The diagnosis of endo was very reassuring to me. It meant that after 10 years of being told that the pain was "more or less in my head" since no diagnostic imaging tests or bloodwork had ever shown anything of significance, that I was not making it all up and that there really was something wrong with me. If doctors had their way I'm sure I would have stopped complaining and given up years before this.

In my years of running the online support group, I have met several women who have been treated without a confirmed diagnosis of endo. A few of these women have been treated with the "harsher" endo treatments, including Lupron. I keep asking myself why on earth a doctor would recommend a chemotherapy agent to a patient without first having a confirmed diagnosis of something. I haven't yet arrived at any good explanations for this one. After all, if some of these treatments have very strong side effects which can last for years post-treatment, shouldn't there be a clear reason to take them?

Having a diagnosis is empowering to a woman. It means that the woman can begin to educate herself on the various aspects of the disease and can work alongside their doctor to come up with the best treatment option that suits them. I can't stress this last point enough, far too often women will blindly accept the "doctor knows best" philosophy of society. While yes, a doctor's opinion should always be considered for what it is, it's also important that it agrees with what the woman wants and desires. If a woman wants to try other options other than a hysterectomy, she deserves to have the other options presented to her and be supported in her decision. The knowledge that comes along with knowing how advanced your condition is, will also help you to plan which treatments you might be willing to try.

The diagnosis can seem overwhelming, after all it is life changing to finally be diagnosed with an illness that will last the rest of your life, but hopefully after reading this those who think that they may have this illness will rest assured that it will make their life a bit easier in the end just to know. Power seems to come with knowing in this case.

Endometriosis: Have you Heard of it?

In looking back, I first heard the word "endometriosis" while sitting in my On-Campus doctor's office complaining (yet again!) of unending periods, pain, and heavy bleeding. The word came out so quickly, and I was feeling so rotten that I had no clue what on earth she had just said, and when I asked her to repeat the word she just said "We'll send you for an ultrasound and then I'll explain it to you depending on the results". I went on my way and never heard the word again, as my transvaginal ultrasound (aka the torture device) came back normal. It wouldn't be until 5 years later that I would learn that you can NOT diagnosed this disease through any of the medical imaging equipment.

I had read very tiny inserts into magazines like Cosmo and Glamour that if women had "bad cramps" they should see a doctor to rule out endometriosis. But the pain of endo is more than just "bad cramps", and many doctors are still under the impression that all women have somewhat painful periods. Some of them even still believe that women with endo are just "more sensitive" to these normal period pains.

I've encountered many people who simply do not know a thing about this disease, and who could blame them when the media offers very little coverage? So, to kick off March 2009's Endometriosis Awareness Month, I'd like to introduce you to the word "endometriosis" and tell you a bit about it.

Endometriosis is a chronic, incurable illness effecting exclusively women where the lining (the endometrium) of the uterus grows in places outside of the uterus. These little lost cells still respond to the monthly hormonal changes that result in a women having her period, only instead of being able to be expelled from the body, there is nowhere for the blood and other cells to go. They cause scarring to the healthy tissue around them, and the little cells start to spread around the pelvic and abdominal cavity. It can cause intense pain as the hot, chemical filled blood sears the healthy surrounding tissues, or the sticky liquids "solidify" to create adhesions which can tug on organs and make them misshapened. Researchers do not know what causes this disease, and without an identified cause, there can be no cure developed. Endometriosis acts a lot like cancer cells in the way that it progresses, so much so that some have compared it to having a "benign form of cancer".

89 million women, 20% of the population or 1 in 5, have this disease. Many probably don't even know it, as it can take on average 7-9 years to be accurately diagnosed. Once diagnosed with this disease, a woman must choose between treatment options that might be useless or might cause life-long side effects. That is, if she is offered a choice at all, as quite a few doctors do not present ALL of the options for managing this disease. I myself have been to several doctors who have told me to either have a baby or have a hysterectomy as a form of treatment (both are not cures for the disease). Many women are simply offered a hysterectomy with the mistaken assumption that if you remove the uterus, the disease stops. If only it were that simple.

Women with endo also face the social repercussions of having a chronic, painful illness, that may lead to infertility. We can't openly talk about our disease in public as there is still a taboo that exists on talking about periods, pain, and chronic illness in general (other than cancer). I have often felt looked down upon because I have almost daily pain, as though I were somehow making up how bad it was in order to receive some sort of attention. As there are many myths that exist around this disease, many of us survivors have encountered people who strongly adhere to these myths, such as the hysterectomy cure, and look down upon us when we try to explain the reality. We have been made to feel like hypochondriacs, and in the case of those of us who are also diagnosed with the many other illnesses that go hand-in-hand with an endometriosis diagnosis, that feeling is even stronger. I've had people roll their eyes and comment outloud "Here we go again..." as though I could somehow control how I was physically feeling. Even worse, I've had to attempt to hide how I am physically feeling, an exhausting feat at best, in order to "make people happy" and not bring everyone around me down.

It is my hope that one day we can have a cure for the 89 million of us out there. Until that day, I will settle for access to better treatments and increased understanding from the community at large. Endometriosis doesn't have to be a hidden disease.