Thursday, May 19, 2011
But it's easy for me to remember those days. I'm still traumatized by the experience of being dead and alive at the same time. I was so disabled. The only reason I went on was for my kids.
I am still processing it all. I hope the people in my life don't get sick of hearing about it, but I need to talk about it. Today, instead of burdening someone else with my memories, I decided to write it down.
I think for others, my illness is ancient history. But for me, I sometimes wonder if I'll ever go a day without remembering. This poem is about being triggered. I hope you aren't bored to tears by it. ;)
Does anyone remember
What it was like when I was sick?
On my back every half hour
Living life dizzy was quite the trick.
But you probably don't remember (like I do)
How shoulder checks made the world spin.
I drove anyway, barely staying in the lines but...
I didn't tell THAT to anyone.
Life would've been harder without a car
And I already struggled each day.
Scorn and ridicule kept me going,
But I did my best for the kids in my way.
The challenges were many;
Standing in lines, walking up stairs,
Avoiding conversations and bright lights,
Deflecting criticisms and glares.
Does anyone remember
What it was like when I was ill?
The doctors' condescension,
The cold, the numbness, the multiple pills.
To you I was alive and wishing for death.
To me I was dead and wishing for life.
To say goodbye was all that was left.
But instead I continued to fight.
Each day now is spent
Doing things I thought I'd never do again.
And I can't help but be grateful
For what I have compared to then.
Now I stand around often (because I can)
Carry my newborn, go for a walk,
Throw out the garbage, do dishes at night,
Hang out with the neighbours and talk.
Drive like a pro, go dancing,
Take my kids to the pool,
Have a drink, go for dinner,
Volunteer at their school.
And I do all this
Without suffering or struggling or needing to lie down.
You should see the smile on my face,
As I write it all down.
Saturday, November 27, 2010
Keeps out the light from all over the place.
Keeps others away when I drop the kids at school.
A walking ghost or a walking fool,
I don’t know what I am anymore.
Trudging through the motions.
Training my emotions – to accept and to rejoice.
Guarding against the people
Who regard this as a choice.
Might as well be crazy
Since I don’t have the energy to prove them wrong.
I’m too busy looking for the strength to go on.
Hoping the grocery store line-up isn’t too long
So I don’t pass out.
To squeeze my ass cheeks to stop me from fainting
To wear my toque indoors in the winter
To enjoy my children from the comfort of my bed
(Reading stories, telling secrets, drawing pictures, playing games, singing songs, being a human canvas for their art, telling jokes, sharing dreams, doing mommy’s makeup from
The reclining position.)
Focusing on what’s important
Taking care of what’s important till I’m so tired and weak
That I give up.
Now who will love them like I do? Now who will take care of me?
Now that I’m too weak to carry on
There’s no more reason for me to be.
I don’t want to be somebody’s burden.
I’d rather be dead.
One more try. Just for you,
My little ones who have seen despair in your young years,
Who have been caretakers in your young years,
Who have witnessed the end of a marriage in your young years.
Mommy is sorry.
Sunday, November 21, 2010
After seeing how much a small amount of artificial colour or flavour (gumball from machine) can do to my son, I am sickened to think of the amount of toxic chemicals I let the "medical establishment" inject into both my children when they were only months old.
I remember when my son was about five months old (and shortly after he had his 4 month vaccinations), he suddenly stopped going to sleep easily in his crib or bassinet. What followed was years of having to sleep with my son, lie down with him at night, get up with him through the night, etc. I wonder now if it was the vaccine that caused it.
The author of the book I'm reading accurately points out that we are injecting our children with massive amounts of toxins as well as a virus or five when their immune systems are only 2, 4, and 6 months old! What was I thinking? I did it with both my children!
Now I am pregnant with my third and my experiences with a medical establishment I've grown to distrust completely, prompted me to research vaccines. I don't give my kids anything anymore without researching it thoroughly.
The author also shows studies that demonstrate a clear correlation with a sudden and huge increase in learning disabilities, children with various disorders on the autism spectrum, and autoimmune diseases with the advent of more and more new vaccines.
Can you imagine if the government and the medical establishment admitted to the mass harm of children through mandatory vaccinations? It will never happen in my lifetime. Maybe when most of the people who pushed it through are dead and they can blame it on the ignorance of our ancestors.
In the meantime, due to overwhelming evidence, they had to allow parents the choice of whether to vaccinate or not. (And I will vaccinate, just not in the first year and then it will depend on the vaccination being offered - whether the illness is deadly if contracted, what the odds are of my child contracting that virus, whether the vaccine contains mercury or other identified toxic material that has been scientifically proven to harm the human body, whether the vaccine has been reported to increase the likelihood of a child developing autoimmune disorders, and so on.)
You know how they say "the personal is political"? Well, this is one of those times. Vaccine manufacturers are in the pockets of the politicians and the decision-makers. Mandatory or mass promotion of mass vaccinations makes them A LOT OF MONEY. More than most of us can ever imagine. Poisoning our children is big business. They are poisoned using vaccines, food additives, pesticides and more.
And we just blindly believe in our government to protect us. We blindly believe in the medical establishment to cure us. We blindly believe that it is a good thing to inject massive amounts of toxins and viruses into newborn babies - because we've been told to do it by those we blindly believe in.
Well, I'm not blind anymore.
And if you can believe this one. I had an even more profound epiphany as I read the section in the book about the Hepatitis B vaccination.
You see, shortly before I became disabled by chronic illness, I had two rounds of the combined Hep A and B vaccination. It was in preparation for my upcoming honeymoon. We didn't end up going on a tropical vacation, but I really wanted to, so I got prepared hoping that that was what we would do. (It was also a recommended vaccine to get in my line of work doing support in a transition house for women with substance abuse issues.)
Shortly after the first shot, I started to get chronic diarrhea that lasted about 5 or 6 weeks leading up to my wedding. I asked my doctor if it could be a side effect of the vaccine and he assured me that it definitely could not. (At that time I was still "blind" so I accepted his response and didn't think of it again.)
He didn't find any problems with my stool sample, so he called it "irritable bowel syndrome" and sent me on my way. I continued to have stomach problems all through the following weeks and into my honeymoon.
Within two weeks of my wedding, I became so ill, I could not function. Doctors couldn't figure out what was causing my heart-racing, dizziness, and fainting.
Well guess what. Hepatitis B has been associated with causing an autoimmune response where the body starts attacking itself. Gluten intolerance can also become an autoimmune disorder. They say it is usually an illness or shock that will trigger autoimmune disorders. In my case, I have no doubt now that it was the vaccination that caused me to become disabled.
You see, it's been shown that people with compromised immune systems should not get the Hep B vaccination. I didn't know it at the time, but I had been suffering with an inability to tolerate gluten my whole life. My immune system was working at full tilt just to deal with the foods I ate every day. Getting that shot fucked everything up! My immune system could not handle it!
I am torn on how I feel about it now. It was an excruciating year and a half that leaves me traumatized. I would never wish it on anyone. But so much good has come of it.
If I had not gotten the Hep B shot, I may have gone on for another decade or more being bloated and tired and burnt out and thinking this is how every one feels. I wouldn't have found the gluten intolerance issue. I wouldn't be eating so healthy now. I wouldn't have known to look for a food cause for my son's behavior problems (which also led to a solution). I would have gone on blindly believing in the medical establishment - exposing my children to harmful chemicals.
So much good has come of me getting sick. As the full picture begins to emerge - and this new understanding of why my illness took such a sudden and drastic turn for the worse - I actually feel a little less traumatized.
I could look back at my ignorance of the harms and the secrets that are being hidden by the government and the medical establishment about vaccinations and be angry at them. I could be angry at how they stole a year and a half of my life. I could be outraged that many organizations like the one I work for now actually REQUIRE Hep A and B vaccinations to work there. I could cry with relief to now know how this all happened to me.
But I do none of these things.
Instead I feel grateful. It was a year and a half of pure hell. But the benefits to myself and my children now are immeasurable and they will impact us for the rest of our lives. I now think it may have been worth the sacrifice.
Tuesday, October 19, 2010
Before FG we were tiptoeing around him, always worried we might say something that would set him off. He had tantrums that would last hours over any little thing.
- Constant moving around.
- Unable to fall asleep at night.
- Night terrors.
- Screaming all the time - happy or angry.
- Violent attacks on other family members.
- Destroying the house in his anger. I've frequently had to hold him down to stop him from hurting us or smashing things in the house.
- Calling names and telling us he hates us.
- Not expressing his feelings with words.
- We had to give away our dog because he wouldn't stop torturing the dog. The dog kept biting him and it was getting worse rather than better like we'd hoped.
Since Feingold, these behaviors only happen in response to a mistake in the diet. We're very early in the program, so we make a lot of mistakes. I just realized that his behavior for several days now has been related to the multi-vitamin I've been giving him in the morning. It has no artificial colours or flavours but it must have something.
But the positives since starting FG are:
- He expresses himself more often, including expressing feelings he has about my separation from his father.
- He apologizes after having a tantrum.
- Tantrums last 5 minutes instead of an hour and a half.
- He doesn't seem out of control anymore - he actually calms himself down when he gets angry.
- He rarely hits us and name-calling has been reduced substantially.
- He sits through meals often and behaves better in public.
- isn't as shy or withdrawn in social situations.
- Carries on enjoyable playdates without freaking out on his friend or coming crying to me.
- Engages in deep conversations with us.
- Manages his frustration better.
- Goes to sleep faster at night, although I still have to lie with him.
- Gets ready for school without a huge drama accompanying.
I'm sure I could think of many more examples of his improved behavior. But the real measurement comes from my daughter and I feeling less tense and on guard. I am able to now discipline him without expecting pure and total rebellion. We are all much calmer now thanks to Feingold.
I wish there was an easier way than having to say "no" all the time to candies and gumball machines (among multiple other "asks" like fruit roll-ups and apple juice). But I have to admit, that although it's a lot more work to feed us all now, I have a lot more energy because I'm not being drained by dealing with what used-to-be his constant episodes.
It has really been worth it for all of us.
Friday, October 15, 2010
I am still so amazed at my new lease on life.
The other day I saw a "disability line" and I remembered vividly that feeling of humiliation as I would walk into the disability line's when I was sick. Knowing that I did not look sick from the outside despite how I was feeling on the inside, made me feel like I should explain myself. Tell people why I needed the lineup. But I never did tell people. I was too tired and it would be too much effort to tell my story. Being out of the house was too much as it was.
That memory triggered another memory when I attended a workshop during my illness. It was early in my disability before it got so bad that attending a workshop would be unheard of. The workshop leaders asked participants to play a game that involved standing, pushing, and touching other people - which would, of course, also involve talking to a lot of people.
I had survived thus far by sitting cross-legged in my chair and taking marijuana breaks when I felt like an episode might be coming on.
I quietly stepped back out of the group and took a seat at the wall, declining by my behavior to participate in the game. If any of the leaders had simply come over to ask me if everything was okay, I could have explained that I had a disability that prevented me from the activities. Instead, they shot confused and offended glances my way, clearly assuming that I was judging their activity or something to that effect.
The workshop was held in Vancouver by a very progressive group used to making an effort to understand and accommodate people with addiction and mental health issues, but obviously no understanding of invisible disabilities. I couldn't blame them. I'd had no understanding before my illness either, and I had organized many similar events.
When I had arrived at the workshop, I asked if they had a medical room where someone could lie down if needed. They did not. Luckily, my friend had parked near the building and I could go to the car in case of an urgent lie down. (Since my first hospital visit, I had thus far been able to avoid lying down on a dirty public floor.)
I have a friend now who didn't know me when I was sick. I catch myself all the time mentioning to him how happy I am that I can "walk up these stairs now" or "stand in a line-up." I am still constantly grateful to have my health back. I wonder if I will ever take my health for granted again or if I have been eternally altered in the way I think about physical ability.
Friday, September 24, 2010
I read this article today in the Vancouver Courier and had to respond. Here is the letter I sent to the editor:
My excitement to see an article about gluten intolerance on the cover of the Courier turned to disappointment when I read the comments about how important it is to get a proper diagnosis. I have suffered from symptoms of gluten intolerance my entire life and thought I was perfectly healthy. Issues ranging from back pain to panic attacks to short stature, all tolerable health issues that I coped with and assumed were a part of life. Then three years ago, I became suddenly disabled with symptoms that seemed unrelated including dizziness, mental fog, fainting, tachycardia, chronic fatigue, cold limbs, runny nose, and extremely dry eyes. I lost my job because I couldn’t work. My marriage suffered. My children suffered. It was devastating. For a year and a half I saw doctor after doctor, being told over and over that my tests indicated that I was healthy and then suggesting I get counselling. I was not eligible for disability benefits through CPP because I did not have a diagnosis. Doctors and paramedics treated me very poorly, as though I was a hypochondriac or a drug seeker. Then one day, when I’d reached my threshold of despair, I gave up on the medical community. I decided I would heal myself. Part of my plan included cutting common food allergens out of my diet. Within four days of being on the diet I experienced a miraculous recovery. I researched the probable cause of my illness among the foods I had eliminated and gluten jumped out of the page. To be sure, I re-introduced all the other foods one by one, except gluten and maintained my recovery. There was no way I was ever going to willingly eat gluten again. I never had a test to determine that I was Celiac, yet I researched gluten intolerance extensively, despite the suggestion in the article that someone in my shoes would not. During that research I learned that many people worldwide suffer severe symptoms when they eat gluten, yet their Celiac tests never come back positive. They have learned from experience that they must live a life free of gluten. They did not need a doctor to tell them that. I may be not be Celiac, but I suffered bone density loss that resulted in scoliosis as a child and a broken foot in the last months of my illness. Osteoporosis is not just a concern for those diagnosed “Celiac.” Let’s stop separating ourselves and realize that gluten intolerance as a spectrum has the same devastating impacts whether a doctor diagnoses us as Celiac or not. And let’s admit that our medical system has failed us miserably by not looking at our foods as a potential source of our illness.
Wednesday, September 22, 2010
I finally applied for a subsidy to receive the feingold materials and hope to be accepted and get them in the mail soon. But in the meantime, I didn't want to wait that long to find out if it would help my son.
I have to tell you, it has been rocky so far. Every time my son goes to his dad's house, I have a feeling he eats something he shouldn't because he comes home and throws tantrums for the next 24 hours. But it could also be the emotional toll of going back and forth between us.
I am glad I recorded everything because this morning, as I read the journal it became obvious that he is reacting to certain foods. I didn't realize early on that green grapes and gala apples were "not approved" for stage one of the feingold program, having read conflicting information on the internet.
These two foods and apple juice too have corresponded directly to emotional outbursts. 100% of the time. It's impossible to miss. I also noticed that oatmeal gives him tummy aches. This could be related to the gluten intolerance because I have heard that some gluten-intolerant people react to oats even if they are "uncontaminated" (meaning they are pure oats and produced in a wheat-free facility).
Anyhow, I was hopeful but skeptical about the feingold program but so far I am convinced it is a success! I can't wait to get my materials in the mail. Thank you Dr. Feingold for sharing your findings with the world so more of our children can live happier, more peaceful lives! Our family thanks you. xo
Tuesday, September 21, 2010
“I’ve drawn upon many experiences in developing this business and sex work is definitely a part of that,” says Bonella. “Many of the skills I acquired in the trade have helped me in crafting a business that reflects both my concern for the environment and my passion for serving people.”
The eatery offers nutritious menu items including substitutes for people with dietary restrictions. Bonella, herself a vegetarian, also recently discovered through an elimination diet that she is gluten intolerant.
Gluten intolerance is an autoimmune reaction to gluten that can cause devastating health effects and often goes undiagnosed. Gluten is a protein found in rye, wheat, and barley. People who are gluten intolerant must read labels very carefully, as wheat flour is used as filler in a large number of processed and packaged foods.
Yogiberry strives to deliver “delicious treats that save the planet” says Bonella adding “Our Smoothie cups are so compost-able they melt when you add hot water in them.”
But it is the food Bonella is most proud of.
“I love the first taste of the new customer, everyone lights up, everything is fresh and delicious,” says Bonella. She attributes her food quality to the partnerships she’s formed with a variety of likeminded businesses.
“Tricia Sedgwick of Seeds of Plenty bakes a line of fair trade chocolate brownies for us specifically that are made from sprouted grain and unspeakably divine,” says Bonella. Yogiberry also carries the Anderssens Flax Rolls, the Truffle Pig line, and their frozen yoghurt is made by hand by one of Vancouver’s top ice cream shops, Bendick Ice Cream.
Bonella invites the public to celebrate Yogiberry’s Grand Opening with her on Friday, October 1st between 7 and 10 p.m. Two-for-one specials will be offered all day. Festivities in the evening will include music, free samples, and a chance to meet the nutrition experts behind some of Yogiberry’s tastiest, signature menu items.
For more information, call Amanda at 778-938-5961 or email her at firstname.lastname@example.org.
Friday, September 3, 2010
Thinking that it still has to do with diet, because I am certain that this is not "normal" behavior and even my son wants badly to find a way to control his emotions and be less angry, I took him off all sugars except natural sugars for a few days. Again, no impact.
Upon further reading, I found out about a program called the Feingold program. I cannot afford to purchase the program, but have read a lot about it and am attempting to try my own version for a week and see it if helps my son.
I read a lot of posts on the world wide web from people who are both gluten intolerant and salicylate sensitive and I am wondering if the two are connected in some way. Please offer advice if you have any to give. xo
Saturday, August 21, 2010
But spreading the word will take more than just talking and blogging. I want to start a strategic campaign to educate people about this curable disease. It hurts me to imagine how many people are feeling hopeless about their health right now and the solution is at their own fingertips. A simple change in diet.
So far I've just begun to brainstorm my campaign. If anyone would like to join me, feel free to comment and offer advice and suggestions. Here are my ideas so far:
1. Get my medical records from each of my doctors during the time I was ill to the point of disability. Find out the names of all the specialists I saw and ask for my medical records from them as well.
2. Write a letter to each and every one of the doctors I saw and thank them for assisting me on my search for a solution to my health issues. Remind them of the symptoms I was presenting with. Then tell them about my recovery. Include another fact sheet about gluten intolerance in the package and a list of resources for them to investigate if they are interested.
3. Make myself available to speak to nurses and doctors or health organizations dedicated to conditions commonly related to gluten intolerance - chronic fatigue, POTS, fibromyalgia, diabetes, autoimmune disorders, etc. Share my story and what I've learned about my condition.
4. Create a package that can be sent out to doctors and paramedics, teaching them about gluten intolerance and how to identify it.
5. Lobby for the stool tests (like what is done at Enterolab) to be made available through traditional medical means and covered by MSP.
6. Send restaurant franchises information packages about adding gluten free items to their menus, how to avoid cross-contamination, and lists of foods that are gluten free and not gluten free for quick reference.
7. Find out more about how gluten intolerance impacts mental health, then create information packages to send to organizations that treat or serve people with mental health conditions.
8. Talk to news media about gluten intolerance and my campaign to ease the suffering of so many people who are sick and don't know why.
9. De-bunk some of the myths about gluten intolerance, like: celiac disease presents with worse symptoms; if you are only gluten intolerant, you can eat a little; gluten intolerance is not genetic; you are not gluten intolerant if your celiac test is negative, etc.
10. Share and exchange information with other people who are gluten intolerant to create an information network and learn more about how this condition affects and impacts people.
11. Share my medical records with a doctor who is interested in joining this crusade and ask other gf folk to do the same so she/he can compare them and see where the similarities exist.
I will call my organization "Society for the Healing of Intestinal Trauma" or "S.H.I.T." LOL!
Now, who's with me? :)
And why don't doctors know about gluten intolerance except in relation to a positive celiac test?
If I do not feed any foods with gluten in them to myself while pregnant or breastfeeding, and do not feed them to my child for as long as possible after he/she is born; if one day my child decides to eat foods with gluten in them, will he or she be gluten intolerant like my other two kids?
Why can some gluten intolerant people eat foods that have been cross-contaminated with gluten during the preparation process and others can't?
If I am unable to tolerate cross-contamination, does it follow that both my gluten-intolerant children are also unable to tolerate cross-contamination?
What similarities in standard blood tests between gluten intolerant folks might help doctors in the future to diagnose earlier? Low potassium? That was one of mine.
Why has only one doctor ever diagnosed me low iron when my ferritin levels were between 16 and 21? The supplements he prescribed gave me a sudden boost in my recovery.
Why do many doctors assume you're mentally ill when they don't know what's wrong with you?
Why do many paramedics treat their clients like disposable human beings and hypochondriacs? Don't they receive sensitivity training? Why aren't they held accountable for such behavior?
How long does it take to recover from gluten intolerance?
Is there really such thing as gluten withdrawal? Can it be measured? Is it worse if it's your second or third time going off gluten?
What happens if you are never diagnosed and you continue to eat gluten until you die? What do you die from? Will you ever get disability benefits without a diagnosis?
Is gluten bad for *everyone*? Even people who don't react to eating gluten?
Please post the questions you have about this condition and give me the answers to mine, if you have them. xo
However, my good health came to an end yesterday when I became severely ill. I ate the bread at breakfast. But after feeling dizzy, nauseous, and vibrating like I used to, I realized it was the bread and stopped eating it or feeding it to my kids. I hoped that I would feel better today.
Today I continued to be very ill and had the first and only episode of postural orthostatic tachycardia syndrome since going gluten free last December. It was so horrible to go through it again. My whole body vibrating and sweating, my heart racing till I felt like I was going to faint, the shaking and unreality. It all came back. I had to lie down and wait for it to pass. It was a reminder how easily I could slip back into illness.
I was not once warned about cross contamination by the baker or anyone else. I’ve been there twice and phoned in an order. There was no warning to me whatsoever. Not once. I was only told that if the bread was sliced by them, then I would have to be concerned about cross-contamination. I chose not to have my bread sliced by them, although I wasn’t even sure if it would bother me.
A google search brought up several reviews made by others who became ill after eating this bread. Feeling this unwell, so that I can barely function is disabling. No one should have to experience this when they think they are eating safely. I am a pregnant, single mother. It's hard enough taking good care of my children without being ill on top of it.
He should not advertise gluten-free if people are getting sick from eating his bread. I thought I’d never have to feel this way again. I wish I didn’t hear of his bakery.
Friday, August 20, 2010
I read the books. I accepted and loved my condition. I looked at all the good that had come out of it - more time with my kids, stronger relationships with them, a new appreciation for what really matters in life, ways to enjoy life from the comfort of my home, and more.
I meditated. I exercised. I laughed. I tried to eliminate stressful people and situations from my life. I gave my children and husband love. And I continued to get sicker and sicker.
It was deflating to fail at physical health as well as healing with the mind. Perhaps it was because I was losing hope for recovery while accepting my condition. Perhaps I wasn't healing with my mind in the correct way. Perhaps I was not thinking positive afterall, but only believed I was thinking positive with all those daily affirmations. Perhaps I did not really know myself at all. Perhaps the doctors and others in my life who labeled me "crazy" were right.
If this is the case, then why within days of going off gluten, was I suddenly miraculously healed?
Some might say that I would never have developed gluten intolerance if I'd stayed positive my whole life. That it was my negativity that led to my health condition. But wouldn't I also be able to cure myself then with positive thinking? I was positive thinking the shit out of everything! My husband laughed at me for my acceptance of my dis-ease. He laughed at me for focusing on the positive under such circumstances. That is proof that I was!
Before I was sick I believed we all could heal ourselves with our minds, but I don't think it's true anymore. I don't think that you can cure yourself of any dis-ease through the power of the mind alone. It can make life more tolerable. It can help you find joy on even the worst days of your illness. And it can lessen the burden on the people around you who take care of you. But healing depends on the cause of the dis-ease.
And in my case, it was poison. No amount of positive thinking will heal a person if they are poisoning themselves multiple times daily. And if this applies to one dis-ease. Then there are certainly others.
So take heart if you are one of the positive thinkers who's health is not improving! There is a cause of your illness that is independent of positive thinking and prayer. Find the cause and you'll find your solution.
I suggest you start with your diet because that is what worked for me. xo
Sunday, August 15, 2010
It was so much effort to speak and smile and be myself. I would be standing there all dizzy, flexing my ass cheeks and stomach muscles to push blood up to my brain. I'd have to rock back and forth because it was better when I was moving than when I was standing still.
I would often just drop my daughter off and pick her up without leaving the car. This was my preference. But my son needed exercise and stimulation, so I alternated depending on whether I was having a good day or not.
I would spread all my appointments and obligations out so that I only had one obligation a day beyond the usual motherhood and housekeeping ones.
I spread marijuana butter on a cracker every four hours. That made me less dizzy for longer periods of time. Before any activity that required effort, I'd have a few tokes off a joint. That would get me through 15 to 20 minutes of doing the dishes, or helping my daughter with her homework.
There is a part of me that fears your judgment about my marijuana consumption during my illness. But I'm not ashamed. I was able to mother for as long as I did because of it.
I remember lying on my bed thinking "if all I can do is be a mother, then that is all I will do."
I had a good friend who would take me out, drive the car, and let me rest on the side of the road when I needed to. She was an angel like no one else during this time. She and I would occasionally go out and socialize in safe places where I would be least stressed by my environment. Usually strip clubs, which are like home to this former exotic dancer.
She accepted me the way I was and still saw the real me.
I would dread going to the doctor. I grew to hold hatred in my heart for all medical professionals. I had been treated poorly and with contempt by nurses, doctors, and paramedics. There had been a few gentle, kind ones along the way. But they couldn't help me either. No one could.
I saw how they looked at me. I knew I had become one of their dreaded patients. The one who keeps coming back saying "nothing has improved, please, help me." And because all the tests they had run came back with nothing, they would say "I can't help you. It's psychosomatic. It's anxiety. It's panic attacks. Sorry, there's nothing else I can tell you. Goodbye."
No one ever told me to come back if I didn't improve. They just saw a hysterical woman crying over nothing.
They judged me about the marijuana, which I find laughable. Only in this messed up society where gay marriage is controversial and most people think adult consensual sex work is violence against women would doctors find fault in the one medicine that could help me. I mean, as long as they were judging me to be crazy, they might as well mark me as a drug seeker and liar while they're at it.
Yes, I am traumatized by that year and a half being disabled. I was completely at the end of my rope, my resources used up, every ounce of me worn down, with no income coming in and a husband who mourned the burden incessantly - and I couldn't even get disability income.
I learned from experience that you can be completely disabled from chronic illness and you won't be entitled to disability benefits if the doctors don't know what caused it.
Suicide, I've read, increases among people living with disabilities. Especially for people with an invisible illness. We are treated like liars. We are treated like we're crazy. Being sick made me realize how poorly people with mental illness are treated.
But mental illness was not my particular complaint. I never lost my common sense. I never lost my ability to put my children first. I was still a competent and capable person. I was not out of control. I was simply out of steam.
Even when I wanted to kill myself, I wasn't "being depressed." I was being practical. Suicide was one of the very few options available to me at the time. But I was a mother. So it really wasn't an option for me afterall. At least not yet.
Gosh, I'm thankful to have my life back.
Tuesday, August 10, 2010
Although the reconciliation did not succeed and against my husband's wishes, I chose to keep the baby. I am now 16 weeks pregnant.
Being pregnant and gluten free is interesting. It has its benefits - no more pregnancy migraines, it seems. I was plagued by them in the first trimester of both my pregnancies and throughout my last one. I had hoped that I would not gain as much weight with this pregnancy (50 lbs with my daughter and 40 lbs with my son). But so far, I'm gaining quickly and despite my midwives reassurance that I was underweight to begin with, I still think it's happening much faster than needed.
The problem is that I'm a thin woman. I always have been. I've never had to watch what I eat. So when I'm pregnant, I just continue my standard practices of eating what I want when I want. Of course I'm making sure to eat healthy. But I'm also craving and enjoying sweets. I am not gorging on them all day, but I'm not denying myself them either.
So, I suspect that my weight gain will still be significant. None of this 25 to 30 lbs crap. lol
Something that has been difficult is feeling sick. It is very triggering. There are lots of similarities between being pregnant and poisoning myself with gluten. Low blood pressure that leads to lightheadedness and dizziness. Low iron which leads to tiredness. Heightened emotional response which can cause me to behave irrationally or get really weepy. The feeling of being overwhelmed taking care of the older kids while I'm feeling so tired and ill.
During my first trimester I was extremely nauseous - worse than any other pregnancy! I was incapacitated. THAT was a big reminder of my illness.
I have to remind myself of all the things I'm not feeling. Of how, even though I'm tired, I'm still far more functional than I was before. How my memory works now. And I don't have to moderate my activities to the extent that I used to.
I have high hopes that this pregnancy will be easier than my last because of my new health. So far, so good. I might be a single mom with a bun in the oven, but I couldn't be happier. I have hope and health and heaven on earth. Life is good.
Sunday, August 8, 2010
She also seems much happier. Some of this I credit with the breakup of my marriage. But she seems to be growing more and more emotionally stable over the last few weeks and I have to acknowledge the gluten free coincidence.
My son, on the other hand, has seemed to be getting worse. His tantrums didn't immediately stop, like I'd expected. His stomach aches have continued. I am limiting dairy but haven't removed it completely. Perhaps I should...
Because I was so sure that my son's behavior was connected to all this, I googled information on "how long before seeing results" on the gluten free diet. That's when I discovered some information that I hadn't really paid attention to before.
Apparently, many mothers have had similar experiences with their children getting worse before they get better. And the reason is believed to be "withdrawal." Gluten acts like an opiate in our bodies, which explains why many intolerant people will crave breads, pastas, and cereals.
Withdrawal can cause moodiness, stomach issues, and headaches.
Most of the mothers in the forums I read agreed that it took up to six weeks for the behavior to improve. We are not quite at week six and there were some accidents in the beginning, so give or take a week or two, the kids have not been completely gluten free for long.
I hold out hope that the results remain to be seen. My son has seemed calmer over the last day or so. But let's see if it lasts.
Symptoms that may be related to gluten intolerance
-pale skin (resolved)
-short stature (some kids have a growth spurt after going gluten free)
-prone to vomiting
-low immunity to colds and flus
-colic as an infant
-extreme sound and light sensitivity
-rash on upper arms
-fatigue when walking
-chronic constipation with periods of very loose stools (and no apparent virus accompanying)
-slowed down growth
I will post on my blog the results as they become apparent (and those that don't seem to change).
He also had behavior issues that just didn't seem consistent with the way I was raising him. He seemed to truly be out of control emotionally. It didn't matter how much love or discipline was employed. He could not stop himself from acting out aggressively and angrily.
My daughter was tiny for her age. She also was depressed. She would focus very much on the negative, looking for reasons to play sick or hurt for attention. She could spend hours and entire days in this melancholy. Every day I would try to brighten up the energy in our family with positive affirmations and engaging projects, but it didn't seem to matter how much I tried to lead by example with both kids, they remained irritable and unhappy.
I'm sure some of their anxiety stemmed from the tension between my husband and I. And certainly, after the breakup, a lot of tension that we'd all lived under evaporated. But both kids continued to struggle with their emotional issues.
As soon as I realized I was gluten intolerant, I became so repulsed by it that I could not bring myself to feed it to my kids. I removed all sources of gluten from our fridge and cupboards. It literally hurt me to feed it to anyone - including people outside my family. I just wanted to throw it all away. But my husband thought I was over-reacting and called me "crazy" (what else is new), so I just gave all the food to him.
He made it his priority to feed the kids as full of gluten-containing foods as possible when they spent time with him. But eventually I got him to promise that if I could prove they were gluten intolerant, he would stop feeding them the poison.
It took eight months before I could offer this proof. Their celiac tests came back negative, but I still felt such a strong aversion to feeding the kids gluten, that I ignored those tests. I'd done enough reading to know that many people with SEVERE reactions to gluten were never able to get a positive celiac result. This was just more evidence at how inept and ignorant the medical community is. Either that or they really don't give a shit and want to keep us sick.
During all my reading and googling, I frequently came across references to a laboratory in Texas that tested stool samples for the gluten antibodies that don't always make it into the blood. They asserted that the anti-gliadin antibodies that the body produces to fight the gluten would be most prevalent in the stool since they would originate in the intestines. This made sense to me and I'm not even a doctor.
Because so many people in so many forums and blogs had referred to and seemed to trust in the fine specialists at Enterolab.com, I decided that I would get the kids tested through them. This was easier said than done though. I was not able to afford the tests. I wrote to Enterolab asking if they had subsidies available for low income patients. But they responded that they didn't.
I repeatedly asked my husband to pay for the tests. He was always ridiculing me for not feeding the kids foods with gluten in them. I would say to him: "Until we find out for sure, I'm not feeding it to them. If the results come back negative, I'll put it back in their diets."
I'm not sure if it was because he really thought I was crazy or because he was just so sure of his rightness, but he finally agreed to pay for the tests to be sent to us. I bribed the kids to poop in the pails, froze the specimens for a couple of weeks, then paid to send them back via same day delivery.
I waited almost three weeks to get back the results and when they came, I cried. Both my kids are gluten intolerant. They would have to give up gluten completely. It was both a blessing and a challenge because they would miss their favourite gluten-ful foods but they could potentially solve many of their health issues. I apologized to them for passing on this genetic health condition, then rejoiced with them that it was a disorder that could be easily cured!
My instincts had been correct. There was a very good reason why my children weren't 100% healthy. And now I could be sure that they would never suffer from the same chronic illness that I had suffered from without diagnosis or hope. They (we) now had hope for us all.
Wednesday, August 4, 2010
I'd been given a second chance. It was like being born again for real. I felt my youth returning. The only part of me that was an old woman now, was my mind. I watched as my face began to look like the face of a healthy young mom, rather than the pale and drawn out face of an ancient on her deathbed. But inside I was still ancient. The pain and trauma of my illness was still fresh.
After a month of walking on air, I began to wonder if I would actually recover completely. Even a small tummy upset or dizzy spell would trigger my fears that the illness was returning. I realized that I couldn't expect to become 100% right away. But I worried that I would never be 100% again. With no one to turn to for advice and no trust for doctors, I was attempting a complete diet change on my own. I had no idea what supplements to take, or which ones I even needed.
My GP, Dr. Semion Strovski, offered no help with this. He seemed to be one of the skeptics. I asked him to order some bloodwork to see if I was deficient in any way. My ferritin levels came back at 16 - only one point into the "normal" range. But he never called me in.
My dizziness and lightheadedness continued and worsened. I looked up information on low iron and I had all the symptoms. At first I'd thought it was hypoglycemia because I wasn't getting enough carbs now that I was off all wheat products. But I went on iron supplements anyhow.
Around this time I also had to move. I'd asked my husband to pay for our living expenses until the end of January, then child support would be enough because I would be working. I had been gluten free since December 4th. So on February 1st, I, my children, our dog, and our cat moved into a one bedroom apartment in North Surrey and began our new life.
Shortly after moving I went to see a doctor in my new neighbourhood. I cannot remember what it was for. I really hated doctors and would not see one unless completely necessary. So it must have been to do with my broken foot or something. (Yes, I broke my foot the same week I went gluten free and had just had my cast off right before I moved.)
Dr. Herar was very abrupt and had little patience for kids. That much was obvious. Because I was a "new" patient at that particular clinic, he asked if I had any allergies and what medications and supplements I was on. I mentioned gluten intolerance and the iron supplement. I did not mention anything about the tests my last doctor ordered. Dr. Herar ordered more blood tests and I had them done, hoping that he would catch my low iron when no one else had.
Sure enough, I had a phone call two days later. Dr. Herar wanted to see me again to discuss my test results. He told me that ferritin levels should be around 40 or 50. My test results were higher this time - 21 instead of 16. But 21 was too low, according to Dr. Herar. He was the first doctor I had met that I finally felt like he had a friggin clue.
He prescribed me supplements including iron with folic acid, fish oils (omega 3's), B12 lozenge, and kelp. Within a week I was feeling much better. My recovery seemed to be speeding along then.
Dr. Herar also said something that echoed my concerns about my daughter. He asked why she was so pale. I had mentioned this before to other family members. Why is she so pale? Why does she have dark circles under her eyes? Oh, she's fair skinned, people would say. Maybe she's tired.
Dr. Herar saw what I saw. A little girl who was not as healthy as she should be. This was just one more crumb of support for my own suspicions. Since I had been learning about gluten intolerance, I was starting to suspect that both my children had inherited my disorder. A suspicion that my skeptics were quick to dismiss as the rantings of a traumatized mother.
Tuesday, August 3, 2010
So great was my fear of being ill again, that I refused to go back on gluten-filled foods. I didn't need anyone to believe me. I knew the truth. I knew my own body.
Not surprisingly, my husband was also skeptical. He told me that I had never been sick. That it had all been in my head. I had created the sickness myself. His mother said in front of my daughter to another family member, that I was crazy. Multiple family members with similar symptoms denied that the cause could be gluten intolerance because their celiac tests had come back normal.
I'd never had a celiac test. But from the research I'd done on the net, I learned that only a small percentage of people with gluten intolerance tested positive for celiac disease. Because of this, doctors sent them home saying they could eat as much gluten as they wanted. It was their own experiences that told them they were gluten intolerant. Once again, the medical community was failing us.
I had become quite accustomed to a failing medical system. It was no surprise to me that the doctors were ignorant of the truth. Not one doctor had ever suggested I look at my diet. Even though the first serious signs that something was to come was "irritable bowel syndrome."
Looking back on the progression of my disease, I was embarrassed that *I* hadn't realized sooner the food connection.
I had thought I was eating healthy. Not one to gorge on sweets, I ate a balanced diet of the four food groups, took vitamin supplements, exercised regularly (although it was in a modified way), and got plenty of rest (thanks to the zopiclone). I also read spiritual literature, meditated, and tried everything I could to "rise above" and "accept" my circumstances with love - like gurus recommend us when we are in need of physical healing.
No amount of positive thinking helped and I eventually became extremely depressed despite being on effexor. The effexor made me less reactive to my husband and reduced my pms, but that was about it. I still lost hope. The only drug that even came close to giving me the tools to cope was the marijuana butter I ate every four hours and the joints I smoked in between to get through my household duties.
After my husband and I separated, I'd actually not improved at all. I continued to be extremely ill with symptoms worsening daily. It was because of this that I realized I would likely have to give up my kids. I could not continue to care for them myself much longer. It *was* easier without my husband's constant criticism and sarcasm. It *was* a more peaceful and happier environment. And this did make coping with my illness easier. But it did not make me better.
Going gluten free is what made me better. And I did not need some jackass with a medical degree to tell me that. They'd never told me anything useful anyhow. I was not "diagnosed." "They" did not find the cure. I was blessed enough to have the solution come to me in my darkest moments of despair. Despair that was caused by doctors. Despair that came from my inability to cope and lack of support.
I learned about suicide that people finally take such a step when they feel they have no other options. When they realize that no one can or will help them. In my case, I realized that no one *could* help me. My family members had assumed my husband was supporting me all this time before we separated. My husband could never see past his own disappointment in the state of our life. He blamed me and his coldness extended to our children. He was a drain on the little resources I had left.
When I found my solution and very few people believed me, it did not matter. I was regaining my health. I would not have to give up my children. I would not have to go on social assistance. I would not have to fight for disability benefits. I would not have to move in with my parents. I would not have to kill myself.
I was going to get a job and get on with my life. It was glorious! And all the skeptics could piss on themselves for all I cared.
Monday, August 2, 2010
The laughing cure was not working. That was clear. I was still as moody and uncomfortable as ever. Fighting with my soon-to-be "ex" husband was not helping the matter.
But maybe I was onto something with this diet. Day one and day two surprised me. For the first time in my life, I did not feel bloated at the end of the day. My nausea was greatly reduced. I didn't know if I was just having a couple of good days but I couldn't refute the absence of bloating. That was interesting. But not mind blowing.
Day three I noticed that my dry eyes which had been previously becoming worse and worse every day, were suddenly improving.
By day four, I noticed a big increase in my energy levels. My eyes were even less dry. My bloating was still gone. And my nausea had disappeared almost completely. I felt incredible. I felt like I was not ill.
Shocked that I could suddenly be feeling so much better in only four days, I went on the internet and googled: "food allergy miraculous recovery"
As I read about the many "miraculous recoveries" people posting on the web have experienced, I started to see the common thread for me. The longer I delved, the more I learned about gluten intolerance and autoimmune disorders. How gluten intolerance IS an autoimmune disorder.
All of my symptoms could be explained by gluten intolerance. And my symptoms had been getting worse? Well, I had been eating more gluten lately. As my depression and hopelessness had grown, I had turned more to comfort foods, not caring anymore. If no amount of eating healthy was working, then why bother eating healthy? I ate more cereal, cinnamon buns, peanut butter and toast. I was poisoning myself.
When I spoke to my husband on the phone that day, I said to him. "I think I am getting better." He snorted skeptically. But I wasn't celebrating yet. I'd had many disappointments; a good day or two that had me believing the worst was over. Then trying to cope as it got even worse. I had hope again. But I was moderating my emotion in case the good days did not last.
I began to slowly introduce the other foods back into my diet. I did not try any product with gluten in it. I slowly phased in every other food I'd gone off of, except for foods with gluten in them. I found that potatoes and corn give me stomach aches and dairy makes me bloated. But I never tried gluten again. So happy was I to have my health back.