Elysia B

THE ALL NEW YOUNG AND CHRONIC JUST RELEASED

2017-05-31T00:06:00.002-07:00

I thought it would be fitting to have a refresh of the blog and a refresher post featuring a new reflection summary of my 10 year health journey. Because lets face it I'm not going to a 10 year reunion with the grad class I never met. So let's see what have I done with my 10 years? I went into my grade 12 year full of life and energy and spunk! Determined to go out into the world and change it! I shall start by stating this is not going to be a touching tale of heroics or about how I chose the road less traveled, and that has made all the difference, for I did not. There was no choice, this journey was thrusted upon me. And now looking back it's been a wild ride, so ladies and gentlemen strap on your seat belts this is going to be a bumpy ride.

For me, 2017 will mark my 10 year milestone of catching a nasty stomach bug, that forever changed the course of history as we know it, or just my life. Do those 10 year markers come with survivors trophy's, 10 year members chips, or do they hand out complimentary barf bags? Are they celebrated with parties or do we not mention those life events. Its funny how something like a dumb tiny virus can come in screw with your genes and then go off like a ninja merrily into the night never be mentioned again. Its so embarrassing to have your dreams taken out by a bug. Its so out of your control, as in stay close to a washroom out of your control... Unlike car accidents people never shut up about them. When exchanging stories in Dr's offices you try not to talk about causes becauses there's always that guy, that's like, "dude a tank took me out, flipped my car in the air 4 x," then they look at you, give the what's up with head nod and you know you have two options the long medical word list of diagnoses they won't know or basically lame disease by flu bug. Tell me what's the cool answer for a twenty-something?

Ok, So If you want to read the rest of the blog post and see the new and improved Elysia B Blog now Renamed Young and Chronic go on over to the new site! There is also a new post on the past 2 pregnancies and motherhood, so get excited! A fun new feature is a forum for young people with disorders so be sure to jump over there and give us a shout!

The Peanut Gallery Highlights Reel.

2016-06-10T13:06:00.000-07:00

If anyone regularly reads this blog I apologize that my writing is less than sporadic. I post as I have time/energy and that seems to be in short supply this year. We have gone from the ups and downs of the first pregnancy, to the joys of everyday life. I continue to attempt a resemblance of balance between managing pain and caring for an infant, a task not for the weak of heart.

The thing that I would say was most shocking in becoming a first time parent was not so much the challenges of having a baby as much as the constant comments and criticisms that people feel are now acceptable to make. Now that we've moved into parenthood they seem to question and comment out loud on everything you do: to swaddle or not to swaddle? co-sleep or bassinet? cry it out or spend all night soothing/feeding? breastfeeding or formula? schedule or on demand? Vaccinated or unvaccinated? somehow these are all mole hills people are now willing to die on. When did we stop being happy that others just had happy fed babies.

The first few months, I felt was full of battles of theses opinions, then came the questions about development.. is he holding his head up? rolling over? crawling? is he fill-in-the-developmental-milestone? is he, is he?

During all the tsunami's of well-meaning advice that parenthood brings its good to take moments to step back and realize he's alive and well, that's really all that matters. I need to remind myself to stop taking these comments so seriously. So I've come up with a High-light's Reel of crazy comments we got from our first year of parenthood:

When a visitor sees baby's first poop thats black and freaks out that he has internal bleeding and the dr.s need to look at him immediately.
The visitor that insists the nurse stop taking his blood as it's cruel to do that to a baby.
The barista that says if his sleeps really bad you should flip him over your head, and upside down as it resets the babies body clock of night time and day time. Proceeds to come from around the counter to attempt to show you...(#back-away-slowly)
If he's crying you should feed him immediately or else your starving the poor thing. Claims that by not feeding him your with-hold food which is such a cruel way to treat a baby.
Your 5 month old should just wear mitts all day so you don't have to put them through the trauma of cutting their nails. (#have-you-ever-tried-to-keep-mitts-on-a-squirming-baby)
When your having trouble breastfeeding and someone not close to you tries to show you the right positions, and attempts to jump in and help you....soooo awkward. (#violated-on-so-many-levels)
When someone finds out you have low milk, then goes on to say how they did too and describes in vivid detail their breast infection that caused it and says they should really look and to see how yours are doing to make sure they're not infected. (#your-not-a-doctor-or-my-dr)
Someone tells you they can't believe your 6 month old is on solids because now he could choke! You should wait til he's older. Next week same person asks why he isn't eating more solids because most babies his age are already eating meat!
That it's such a shame you have to feed him formula because he's going to get allergies now.
When your child has bad eczeme and the Dr has said to bath him every other day. Then someone tells you your dr is wrong and you need to bath him more often as it will get rid of it. After repeatedly going over why your following the dr's advice they proceeds to text over articles about proper baby hygiene complete with highlighted sections.
Someone hears you fed the baby carrots as his first food, with shock and outrage cries oh no that's terrible we know so and so and they're distantly related to you and allergic to carrots!
Someone changes the baby's diaper for you, and sees two pink spots on his bum proceeds to cry which makes the baby cry... Tells you that he definitely has an infection and needs to go to the dr asap... you open diaper and can't see the skin or spots because from just below his belly button all the way to his but crack is coated in thick white cream because the zinc will cure the infection.
Being told your baby has eczema because you use a certain hypo-allergenic baby lotion and someone not genetically related to the baby is allergic to that specific brand so you need to stop using it immediately.
Come home and your toaster that was on an island unreachable to the baby that doesn't roll over yet has been unplugged because so and so's kid stuck they're finger in a toaster and got electrocuted.
Every time a person hears your baby started eating fill-in-the-blank food and needs to tell you about someone who they know that is allergic to that food.
When someone finds out your pregnant again and starts wailing, "oh no, oh no" with their head in their hands, and says (directly quoting here) that they feel like they're going to die, and asks if this is a bad joke, then continues to say they're sick with worry because they know you can't handle it.

In the end I look over the list have a laugh, and think wow it's amazing how much people care about all the details that make up my babies life. Its amazing how once you reach motherhood boundaries that existed before seem to have evaporated. Personal space while once it was a thing and meant I had a comfortable bubble, is now a meaningless term to both baby and others. Talk about people wanting to be all up in your business, it seems endless. Each stage of life brings new challenges and the best you can do is roll with them and find humor in it.

~Elysia B

Fastest Butter Chicken Recipe

2016-01-29T20:43:00.002-08:00

So this is the fastest and easiest way that I've found to make butter chicken in 30 minutes and also have a few freezer meals out of it.

Step 1: Get the ingredients, buy a two jars of butter chicken sauce, and 1 Rotisserie chicken.

Step 2: Boil water for rice, and while it boils de-bone chicken and chop into small bite sized pieces

Step 3: Heat up both jars of sauce in a large sauce pan and add all of the chicken.

Once the rice is cooked enjoy your meal and pack up the left overs to store in the freezer for when you need a night off from cooking.

~Elysia B

Preeclampsia

2015-10-28T22:55:00.000-07:00

Preeclampsia was something that until last month all I'd known about it was that the writers of downton abbey used it to kill off my favorite character. I know it's naive to think about now but, I didn't consider it being something that people still died from, or much less still encountered before now. I didn't read up on it in my pregnancy books, because it didn't seem like something worth worrying over, it seemed like more of a myth...That is until I went to the monthly doctor visit and was told my blood pressure was too high and to report to the hospital maternity wing for observation and testing.

The Dr. told me that day, that at the hospital they'd be monitoring for preeclampsia, and knowing that it could be fatal, I was concerned. But still, I thought it was probably nothing, perhaps my blood pressure was off that day, or the under-treated neuropathic pain, or fibromyalgia, had spiked it somehow. As I sat in triage the nurses put on the baby monitor on my stomach for baby's heart beat to indicate stress and the contraction monitor to see how my uterus was doing. After 20 minutes of monitoring and other tests it showed that my blood pressure was elevated above what it should be. Yet my blood test results were good and although there was protein found, it wasn't necessary to keep me. I was told to just monitor my blood pressure at home and come back in two days for more observation and tests.

I went home feeling like I'd dodged a bullet. Although I felt worse over the next two days and my blood pressure was wonky, I thought that I'd just go in early to mention it to the Dr and then be reassured it was nothing and go to the wedding we had planned to attend. After mentioning the pain in my ribs, the little spots I saw through my slightly more blurred vision, the Dr ran more tests and they showed elevated levels of a variety of preeclampsia markers. The Dr. decided to keep me for observation and so began the catch and release program, through which I went from 34 weeks pregnant to delivering my son at 36 weeks. Those two weeks I spent mostly in and rarely out of the hospital being monitored and tested daily as my levels rose and symptoms worsened. It was when I stopped keeping sips of water down and my liver enzymes rose that the Drs decided to induce me as my preeclampsia was explained as being too dangerous to keep monitoring. After being induced I was in labor for 5 hours and gave birth to my son, who after a few seconds after being put on my stomach wasn't breathing and was rushed to the NICU. The next two hours were more terrifying than anything I could have imagined I was told he was having trouble breathing and that I needed to pass the placenta, be stabilized, and stitched up before I could see him. I tried to will my body to be better, to summon any last bit of energy I had just to be able to see him and see that he was okay. It mattered very little to me, if I was stable or stitched up I had to know he'd be okay, nothing else mattered. My mind raced as to why no one had come to say he was okay yet. My husband had gone with him to the NICU and the nurses were dead set on keeping me in my room and in my bed. My mind raced as to what went wrong, what had I done wrong, but the Dr.s and nurses couldn't say if it had been anyone's fault as there is no known cause for preeclampsia. It wasn't a reassuring or supportive environment as it had been before the birth, afterward it felt cold and prison like. The early warmth and joy that came with the observation part our catch and release time, had now come to an abrupt end and I felt alone, guilty, and scared like I never had before.

We were kept a few days as my son needed the CPAP to breath the first 24hrs, and visitors came and went. I just wanted to be alone secretly feeling a mixture of emotions but mainly that birth was traumatic and scary; confused as to why people thought it was glorious. When my milk supply did eventually show up to the party it was lacking greatly and so my son had to be started on formula right away. It felt like a failure of motherhood times two. The NICU nurses were kind to me and I felt somewhat safer and calmer sitting by the incubator where I could see him breathing and make sure he was okay. When visitors came I felt more like a circus act than a joyous mother. This was not what I had imagined motherhood to be like, this was terrifying and overwhelming. In the moments alone with my son I felt immeasurable joy, as I saw him and held him. Watching every movement not wanting to miss out on a second. The time passed and we were both cleared by Dr.'s to go home, I was excited and mostly because I thought we'd finally get to be alone together just him and I. Suddenly new challenges awaited us and I had no idea what was in store.

~Elysia B

Pain medications in third trimester

2015-07-28T23:00:00.000-07:00

As the third trimester approached I began to struggle as I was completely off of any and all pain medications. Trying to see how long I could go without them as in the third trimester it is suggested to try first to go on bed-rest and not have any medications as it's the best for the baby. My pain specialist has noted that understandably, I may need to go back on medications as pain causes stress to the body which is also bad for the baby. Thus, weighing all the research about my options, nortriptyline while unsafe in the first and second trimesters is now an option to go back to or doxepin. Yet, the least effective and least damaging would still be the Flexril and Extra Strength or T3 strengths of Tylenol as a combo. I've decided that at least with a low dose of nortriptyline (75mg) at least I know it will be effective, as the flexril/tylenol in the 1st and 2nd trimester was a joke, and trying something new like doxepin that's so closely related to the nortriptyline is a risk simply not worth taking at this stage.

However, all things considered I feel like I could manage the fibromyalgia in stride through on bed-rest but what I'm noticing to be most unbearable is the neuropathic pains. The fibromyalgia is predictable as I know where it will hurt, I know it will gradually flare and regularly hurt at increasing levels but the neuropathic is unpredictable. It comes randomly to differing locations and stays for differing durations, it's unpredictable and unbearable. I continue to look healthy and fine on the outside, as my appearance has never reflected the inside pain and sometimes, its quite upsetting as it makes me feel incongruent. Regardless of my pain level that ranges from 8/10-10/10 I reflect nothing on the outside; The surface level that everyone else sees feels like a lie, as it reflects a calm happy face when my insides have a war raging on. When the pain gets too bad to bear I calmly leave the room and go sit in the washroom where I don't need to smile and sometimes if I'm honest, I can't help but cry because its too much to bear alone. But, I suppose that's just life with this type of disorder, when it gets to heavy you take a time-out, leak out some tears, take a couple deep breathes, and eventually pull yourself together and return to life. Is there a better way?

Some people go all natural and unmedicated they swear by smoothie concoctions, natural health products, and vitamin supplements. All of which may help a mild case and may be good for fibromyalgia management, I have yet to discover one that helps my case of it. Yet I wonder what natural things are there for neuropathic pain?

B12 injection or supplements are said to help with general pain, also Zinc deficiency can cause pain. I've had the B12 injections during flares in pregnancy but it hasn't helped in any significant way.
Neuropathy: The Northern California Chapter of the Neuropathy Association has published a guide to complementary and alternative treatments for neuropathy. Among the treatments listed are alpha-lipoic acid (a universal antioxidant), Bowen therapy (a type of massage) and IVIG (intravenous immunoglobulin therapy), as well as many folk remedies such as borage oil, primrose oil and nettle footbaths. Though there is little scientific evidence supporting these treatments, they are recommended anecdotally by members of NCCNA support groups. Be sure to always discuss alternative treatments with your doctor before experimenting with complementary therapies.

What cures random electric shocks and sharp stabbing pain? Can we naturally cure this extreme? There are plenty of Dr.'s that continue to tell me how great it is that I'm pregnant as they say, "often pregnancy cures lupus, and fibromyalgia" they talk of pregnancy as a wonder drug in and of itself, that miraclously solves diseases that they can not explain. Does science really back up this claim I wonder?

Autoimmune disorders complicate pregnancy

The title above links to an article that was written by Dana Levy who notes how, "pregnancy and autoimmunity are a potentially hazardous combination. But with the right guidance and therapy, these women can become healthy mothers." As a question and answer with two Dr.'s (Michael Lockshin, MD, professor of medicine and obstetrics-gynecology at the Weill Medical College of Cornell University in New York City, and Laurence Mack, MD, an obstetrician/gynecologist with a special interest in high-risk obstetrics in Massapequa, N.Y. ) The article is a helpful resource for women with autoimmune disorders to understand the risks and benefits to pregnancy. As it relates to medication issues I have copied the question and answers directly below:

Q: Can a woman continue to take medication for an autoimmune condition while pregnant?

Dr. Lockshin: When women ask if it’s safe to stay on their medications, I say “I don’t know,” because there is no information available. Many medications have not been examined in pregnancy because drug companies don’t want to give experimental drugs to pregnant women. Often, the only data available are from animals. That said, cyclophosphamide and methotrexate are absolutely forbidden during pregnancy. Additionally, women should not use anti-inflammatory drugs in the latter stages of pregnancy because these agents can damage the baby’s heart and kidneys. In early pregnancy, however, these drugs are probably fine. We’re quite comfortable prescribing drugs like prednisone. With rheumatic diseases, we frequently prescribe hydroxychloroquine.

Thyroid medications and insulin are also safe. There is some uncertainty about immunosuppressant drugs, but by and large, it is probably better for a woman to continue such medication and not risk a flare than to discontinue it. One of the worst scenarios occurs when a woman finds out she’s pregnant and stops her medications cold, only to have the disease explode.

Dr. Mack: We give pregnant women steroids, but we don’t like to prescribe high doses except in bursts. The strategy entails giving a burst and getting the autoimmune flare under control. Steroids should not be given on a chronic basis in high doses before 16 weeks’ gestation because they can cause congenital anomalies.

~Elysia B

Tool kit for Getting back up

2015-04-16T21:06:00.000-07:00

Last week I was finishing my last research papers and prepping for finals with aspirations of walking across a long awaited graduation stage. This weekend I was seen at a walk-in clinic presenting with lost weight due to not keeping food down all week, nausea, and pain, but the main concern with being pregnant was the lost weight. After I pointed to the pain the Dr sent me to the emerg as I had appendicitis, the pain was not phenomenal at first, but like the gallbladder incident I don't notice until its late in the game. Thus, at 3 am sunday morning I had a freak appendectomy and it sucked. Being 19 weeks pregnant its just not cool. At one point they had me on some IV pain killers and I broke out in hives, but only on one arm, the one wrapped around my stomach when I pulled it away to itch it, I felt the shock of Moses as I looked down at my diseased limb... But life happens nothing you can do to change it. We switched med's, and got the surgery as it was the best option. Now I look at the future weeks and I need a literal help getting up as muscles are weakened and theres the possibility of infection. This week things look different, graduation may or may not go on without me, I may or may not be capable of taking exams soon enough, it really sucks. But the important things haven't changed I'm alive, my baby's still safe and well, for these things we give thanks and with hope we get back up.

When dealing with mass amounts of pain on a daily basis it feels similar to being a gymnast you grow used to the pain, and the constant falling. You have a few good days where you can reach the higher bars and then sometimes you wind up and swing to reach and fall hard. "If you like falling gymnastics is the sport for you, you get to fall on your face, your ass, your back, your knees, and your pride!"(a quote from a gymnastics movie) I feel like I can relate a lot to falling, as I have shown throughout this blog I fall alot, but the one thing that pain also teaches you is how vital it is to keep getting back up.

The first few falls you may feel you'll never recover from but the most important thing about pain is how you respond to it. You always have the choice to get back up, to say to yourself, "Ok maybe today sucks, but this is not how my story ends, tomorrow will be better." Or more relevantly, "So this isn't how I saw my week going, and it really sucks, but we will get back up eventually." Pain teaches perseverance in such a dire and fundamental way, that it makes it a life dependant skill. There is a great deal of pain in our world, but there is also hope, and we need to hold on to that. There are great stories of Vikor Frankl, Joni Eareckson Tada, Philip Yancey and of many others who have shown how to suffer well, how to get back up and it is largely due to their influence that I feel learning to get back up is perhaps the most important skill you can learn in your life.

Thus a good survival kit for a bad pain day should include a some John Oliver who's hilarious view of the world should bring some giggles, a few funny pinterest boards that make you laugh, or inspirational boards to keep you going and if you need it a book on suffering that through reading others experiences may bring some wisdom to what you deal with it.

~Elysia B

the effects of neuropathic pain and fibromyalgia on pregnancy, and pain treatment safety

2015-03-31T12:49:00.000-07:00

Recently I've been researching the effects of neuropathic pain and fibromyalgia on pregnancy. As by now I'm 16 weeks pregnant and we've let all our friends and family know of our coming excitement. I think its then a little over due to write about it here.

Since I am finding that having Fibromyalgia and having a baby, is fast becoming the ultimate challenge. In order to keep the baby health it is an incredible balancing act, you need to make sure your drugs are safe as the first trimester is most important to the baby's brain and development. But, also that the pain is not going undertreated as it causes stress on your body and your baby. After seeing 3 Dr.'s and 2 pharmacists, in the first few weeks, I found that the Lyrica was unsafe to stay on, however will not do damage, if I went off of it slowly, and over course of a few weeks. (Luckily I was only 3weeks when we found out) However, the Noretritylne is said to be ok, by some and argued as dangerous by others. What a foreign thought to think another human being, is alive and growing within me.

Thus first hurdle I encountered was going off of the medications that my Pain Specialist deemed unsafe, which the very thought of terrified me. I was off of the Lyrica (300mg) and Nortriptyline (40mg) within the first couple of weeks luckily for us we found out early enough. The Specialist switched me onto cyclobenzaprine (40mg) to help with the pain at night so I could hopefully sleep better. My average pain went from a 7/10 to a 9/10 almost immediately after stopping my medications which is quite a leap, as not only the level of pain changed but also the amount of pain. As the neuropathic pains were mostly being limited from existence through the Nortriptyline. Now without it there to stop them from coming they are coming back with a vengeance, daily growing stronger. The fibro pain was limited by the Lyrica, which without it now similarly grows stronger. After 10 weeks the cyclobenzaprine is rendered useless as its ability to help has weakened as the pain comes flooding back.

The lifestyle effects of the pain are dramatic as can be expected as the morning sickness mingles with chronic fatigue and mendling into the pain symptoms creates what feels like a perfect storm. After seeing multiple specialists they all agree that the drugs are not worth the risk to the baby and I sadly agree as its hard for me to admit that anything would be worth a risk to another life that I am responsible for.

This weeks been the hardest, as I've now surpassed the max allowable classes and go into tricky territory as courses end in three and a bit weeks and I will finally graduate with a BA in Crisis Counselling. Grad seems like a light at the end of the tunnel and my director has assured me that if I need more grace on missing classes I do have extenuating health circumstances that should suffice as reasoning. I worry nonetheless which is only to my detriment as stress exaggerates the pain levels to my brain. The stress from outside areas like family issues and school issues have had me throwing up non-stop this last week, not to mention in embarrassing places as I lack control over more bodily functions. I am learning that with a pain disorder that is triggered by stress I need to protect my baby through having stronger firmer boundaries with others. As if I lose too much more weight they will want to put me on IV's, not cool.

At 16 weeks pregnant life grows more trying as my pain levels threaten any attempts towards finishing my research papers, classes, and finals; not to mention un-packing from our move, and wifely duties. I sometimes find myself crying on bathroom floor, because I just can't take all the pain, all the time. The latest Dr I saw was a neurologist about the neuropathic trigeminal pains , and he advised that I "grin and bear it, as theres nothing we can do for you until after the birth".

Further research turns up similar findings, "that women with fibromyalgia had more symptoms of pain during pregnancy than women who did not have fibromyalgia. Also, fibromyalgia symptoms seemed to be exacerbated during pregnancy. As pregnant women with fibromyalgia may experience significant pain, fatigue, and psychological stress, especially in the first three months". It's the fourth month and I struggle to maintain my basic daily routines, when I eat the motion of moving my hand to my mouth hurts. There is bone pain in my knuckles, through to my elbow and random neuropathic pain shoots through my veins shocking my system and causing me to jump. The most troubling part of all the pain is that no one understands, or comprehends the extent of it as I do. I know when I explain it to them, they have some brief or vague form of understanding but it is worlds apart from where I stand or fall depending on the day. The research on pain medications and their uses in pregnancy while promising seem also misleading as the College of Family Physicians of Canada state on their website that,
"Commonly prescribed pain medications appear to be relatively safe to use during pregnancy. None of the analgesics has been found to increase the risk of major malformations, although caution should be used when prescribing them in late pregnancy. Because of fear about use of drugs during pregnancy, some pregnant women would rather suffer than treat their pain. Consequently, it is possible that such women are at risk of undertreatment, or no treatment, for painful conditions. Chronic, severe pain that is ineffectively treated is associated with hypertension, anxiety, and depression—none of which is conducive to a healthy pregnancy.1,2"

However, in my experience with the current doctors I see, from GP's to Specialist's all either refuse to help treat the pain or warn against with only the hope of a very weak prescription to help me cope. While the research states how a variety of pain medications are safe to use, Dr.s often view them as to large a risk. While there are some drugs that are very dangerous to take when pregnant and that is why I choose to go off of mine, I understand that there are also those that have been proven to be acceptable with caution. Drugs should only be given if the potential benefit outweighs the potential risk. Thus my pain specialist has switched me from the cyclobenzaprine to Tramacete which he has assessed as safe at the lowest dose and will be worth the minor risk of taking. The College of Family Physicians of Canada further defines safe drugs in pregnancy below:

Acetaminophen

Acetaminophen, a nonsalicylate similar to aspirin in analgesic potency, has demonstrated efficacy and apparent safety at all stages of pregnancy in standard therapeutic doses. Its established safety profile for use has been demonstrated in a recent study of thousands of pregnant women, without increasing risks of congenital anomalies or other adverse pregnancy outcomes.3

Nonsteroidal anti-inflammatory drugs

Nonsalicylate NSAIDs are known to relieve pain through peripheral inhibition of cyclooxygenase and hence inhibition of prostaglandin synthetase. They include drugs such as ibuprofen, naproxen, and ketorolac. To date, studies have failed to show consistent evidence of increased teratogenic effects in either humans or animals following therapeutic doses during the first trimester. However, even short-term use of NSAIDs in late pregnancy is associated with a substantial increase in the risk of premature ductal closure.7

Opioids

These agents include morphine-like agonists (eg, morphine, hydromorphone, hydrocodone, codeine, and oxycodone), meperidine-like agonists, and synthetic opioid analogues (eg, tramadol). Reproductive studies describing the use of narcotic analgesics in human pregnancies are limited, and there are no prospective, comparative studies. However, these drugs have been used in therapeutic doses by pregnant women for many years and have not been linked to elevated risk of major or minor malformations. The Collaborative Perinatal Project identified 448 morphine exposures at various stages of pregnancy and found no evidence of increased teratogenic effects.8 The Michigan Medicaid study reported 332 newborns exposed to hydrocodone, 281 exposed to oxycodone, and 7640 exposed to codeine, all in the first trimester. The rate of major birth defects was 4.6% for the oxycodone-exposed group; 4.9% for the codeine-exposed group (consistent with the general population risk); and 7.2% for the hydrocodone group, which could have been influenced by confounding factors (ie, maternal disease severity and concurrent drug use).9 A case-control study of 141 infants with cardiac malformations did not report an association with the use of codeine in the first trimester of pregnancy.10 Neonatal withdrawal has been observed with use of codeine in late pregnancy, even with therapeutic doses in nonaddicted mothers.11,12

Common Medications Used for PainManagement in Pregnancy:

Acetaminophen, NSAIDs, Opioids, Benzodiazepines, Steroids, Antidepressants

Categories: Ibuprofen (B), indomethacin(B), ketorolac(C), naproxen(B), aspirin(D)

Note that, Pregnancy categories listed above are for first and second trimesters. All NSAIDs are category D in the third trimester. However, there is No role for use of these drugs that is safe in routine pain control during pregnancy. And, If NSAIDs must be used, the duration should be limited to 48 hours or less.

Meds for Migraines:

Caffeine, Sumatriptan, Beta Blockers, Ergot Alkaloids, Local Anesthetics, Anticonvulsants

When it comes to the use of Opiods:

If used for prolonged periods during pregnancy, can induce neonatal opioid dependence – withdrawal can range from mild (irritability) to severe (seizures) and is called Neonatal Abstinence Syndrome

Hope some of this research helps others :)
~Elysia B

Final Exams and Fibro Flares

2014-12-30T14:19:00.000-08:00

When facing final exams I try my hardest to focus on the task of memorizing and understanding mounds of information. Often in those moments, when the stress level rises like water slowly filling up to my chin, my nose, and quickly I gasp before the waters rise up to my eye level....This is the level I have been at for a couple of weeks now. Finally, I am done all of my exams with just one last paper to write. At times I feel I plead with myself for more clarity, more strength to keep going, to keep pushing through the pain. Being Christmas time, I attend events in spite of the pain, pushing myself harder to stay longer, and to do everything. The problem with this is that there is this insane notion out, that somehow I can do everything. With all these health issues that remain invisible I never look sick, thus how could I be? I rarely speak of it out loud, because I don't like to be looked at with pity, or implied weakness, thus it must not exist. However, I feel like the internal pop bottle has been shaken too hard this week and the lid's about to burst off and create a sticky mess.

In this dangerous state when my whole body cries out at me abuse, abuse, abuse! While my migraine pounds to the same agonizing beat, it would seem as though my body feels I passed a limit again and shall pay the price. Good thing I have a week between exams and actual Christmas events, a week dedicated to recovery with a side of house wife chores. All the while in my head I feel victorious, as yes I am ashamed that my homes a disaster, BUT my papers are finished (minus 1), my finals are finished, and I made it out to all the social events - for me in my state those a great heroic accomplishments. Because I try so hard, I push so hard, and sometimes its through physical limits and other times its emotional limits. After pushing so hard I achieved a lot and, proved to myself that despite my limits I can get terribly close to them and succeed. Yet, I don't recommend getting close to your limits or pushing too hard as this week I am in recovery and feeling all the painful side effects of pushing too hard.

One of the main side effects, being that if, you are at a level 8 in pain, then hot buttons are triggered more easily due to the level of stress effecting the pain. My normal is a level 7 of pain which is only possible with 300mg of Lyrica in the morning, 1.5 mg synthroid for the hashimoto's, and 40 mg of Nortriptyline at night for pain. I have charted my pain levels using the Catch My Pain app from which you can see the images below:

Perhaps checking out that app can help with catching your pain levels :)

~Elysia B

Wasted Potentials?

2014-12-17T12:00:00.001-08:00

I fell down a rabbit hole today, I read the Upworthy.com article titled: They Show What's Wrong With The Way The World Treats Girls Without Even Saying A Word. The title kinda says it all, so by the end of the article there are two organizations you can look further into: "Organizations like The Girl Effect and Malala's Movement stand up for the health and well-being of girls around the world.." Both of which have more articles that open our eyes up to, just how poorly other women are being treated in the world we live in.

The girl effect has numerous statistic's and projects that gives you a better look into the dangers girls face while also providing a new perspective that's worth considering. In the Girl Declaration they feature 5 Goals and 7 principles, that can create change towards a better future for girls and end poverty in the world.

The point that stood out to me most was that they point it out in more financial terms which you can see in the above image that reads,

"The Return on Investing in Adolescent Girls is High, so are the Costs of Excluding Them. Just one additional year of secondary schooling boosts girls’ future earning potential by 15-25 percent. In Kenya, that means national income could jump $3.4 billion – almost 10% – if all 1.6 million Kenyan girls completed secondary school and the 220,000 adolescent mothers avoided pregnancy. In India, the stakes are even higher. With nearly 4 million adolescent mothers annually, India loses $383 billion in potential lifetime income."

Thats a big cost, and it continues further to show how, "Investing in Girls Helps Solve Global Changes. Investing in adolescent girls is critical to a sustainable future for us all. Adolescent girls can accelerate change on issues ranging from climate change to peace and security. These issues play out on a daily basis in adolescent girls’ lives, yet we fail to make investments that target the unique needs of specific populations of adolescent girls. Building adolescent girls’ capacities accelerates change today and will equip them in the future to make informed decisions about issues such as land resource management, innovative solutions for a green economy and leading more equitable societies. " Continue reading here, Its worth the read or at least a brief skim.

I love that there are organizations in place putting these things together but they need funding to continue, why not support them this christmas season? I find it interesting that in america we focus largely on areas like climate change, environmental issues, food allergies, and animal testing. There are so many climate change focuses that they even thought of introducing carbon taxes, on most make up brands theres bound to be something featuring animal testing and in almost all coffee shops there dietary fads that flourish. But aside from these popular issues, what about the problems actual people face?

Aren't these people worth putting the time and energy into helping rather than primarily focusing on environmental or animal movements. Because IF women are educated in other countries, THEN there would be more brain power going towards all these other causes. And, with all that brain power possibilities would become larger, and opportunities to create a bigger longer lasting change could effect those other areas. Would we not bring a bigger end to these popular issues if ALL women were educated and could then have the opportunities to help in coming up with better solutions? If we look at the UN Statistics on literacy to get a better all around look at the effect on the globe:

So we can see that if there is 17% of the world's population that are illiterate, and 2/3 are women, that makes up 11% of the world. Thus, if 17% of the world is illiterate that's 17% of the brain power we're missing out on, isn't that worth changing or at the very least considering changing. Perhaps a literacy tax would be more beneficial than a carbon tax...

We waste food in america, it's just a fact we are privileged and grow up with increasing numbers of health issues such as obesity, which is a direct result of our privilege. But considering the global stats of illiterate people, do we not also waste the potential of that 17% when we fail to aid them?

These are just my thoughts, after reading the article what are yours?

~Elysia B

Is there a way to block pain -- true or false

2014-12-04T11:31:00.002-08:00

New Research

Recently published on Nov. 26th there was a new medical discovery that seems intriguingly like a glimmer of hope for those of us with all sorts of pain. In Saint Louis University, a way to block the pain pathways in animals. This would mean that they are stopping neuropathic pain at an animal level which is promising and hopeful for humans. You can read the article here, its titled 'Off switch' for pain discovered: Activating the adenosine A3 receptor subtype is key to powerful pain relief

So if there is this way to block pain in tiny animals do you think they will find a way to help humans?

It seems to me that our brains are far more complex to those of rats with brains the size of my thumb. Could there really be hope, or is this a cruel statement prematurely made?

~Elysia B

How the common cold effects Fibromyalgia

2014-11-14T18:15:00.001-08:00

Today the neuralgia (? if thats what this is) combined with the fibromyalgia and have stolen my energy. The night before was long and painful as I was up crying, and holding all the parts that hurt. The electric flares up and down my spine shooting to my ears, head, hands, feet, back, and chest. It was one of those nights when the pain is so bad that you can't fight tears and fears at the same time and so they both rush you and flood your systems. After getting 4 hours of sleep between the crying, the shooting pains and coughing. It wasn't till later when I was reminded that the endocrinologist I just waited 2months to see was sick last week when I saw her. Most likely, I have ironically caught a cold from my Dr.... Colds are different for people like me though, they affect all my systems.

A cold for someone with fibromyalgia, is like a child in a room full of buttons and being told not to push them. The curiosity over comes them, turning the pain nob up and pushing the thyroid leaver back and forth, twisting the temperature up and down, seeing what happens when nerve buttons are played with like a whack-a-mole game. You get the picture..... its not fun. When a cold hits its best to rest, realize limitations and give your body the extra care it needs.

I had big plans for today, I was going to go to class, write 2 papers, go to my volunteer hours with Victim Services, and help train a new volunteer. I had big plans...its date night too...yet I am confined within my body and plans will have to wait. I will sit in this pain today and ride out the storm as that is all that one can do. But on another note, while in this pain I wonder where is the line I should not cross? How will I know when it gets to bad and I should go in to the Dr and seek medical help? The trouble with being in this kind of pain is that I didn't feel my gallbladder when it got bad enough to go in, I am in a constant state of pain that I no longer recognize when I should seek help. I went into a emerge after the pain became unbearable, they drugged me, and after a couple of hours of blood tests (and five different needles) they concluded that the flu/ sinus infection had aggravated the already inflamed trigeminal nerve and fibromyalgia. I was sent home with stronger pain killers and no resolution. This is the risk of going in, because when its chronic they have difficult ruling out symptoms as it more often than not all comes on at once with no key answer.
All I know is that today is a rough day, when the shirt I am wearing hurts my skin, everything hurts intensely and I am at a 9.5/10 and my normal is 7 so I wait. With high hopes of it subsiding and going on with my day. Until then, I shall alternate between knitting, and curling into a ball to cry.

While I'm like this I like to distract myself with hilarious things that I find amusing. I find that laughter is the best medicine for pain, as just because I am stuck in this body does not mean my mind is trapped too. Your mind can be a powerful tool which allows you freedoms you may not be able to reach just yet. However you can still learn new skills while your body is in pain, if you allow it to. Languages, knitting, crochet, courses on any number of things, and of course TED Talks, your brain can be used to learn breathing techniques to deal with the pain better. And on days when you are not sick you may have a new language to try out, or a scarf to keep you warm when you finally get out and about. Its easy to get depressed about your situation when sickness hits someone already dealing with chronic illness, its hard to get back up but I promise you you can. I have fallen many times but gotten back up, at the moment I'm wiped out by a tiny flu bug and will continue to fight to get back up. The flu can send someone with chronic conditions into the hospital as there are more risks involved. While I am down I work hard on essays for classes, and focus on what I can do, thats the hard part. Our brains naturally focus on what we lost, or are losing, but challenge yourself to get back up, to look at what is still possible. I feel as though my motto for life is like this picture these days:

~ElysiaB

P.S. A few pictures I found funny:

Blood Work Advancements

2014-11-01T12:36:00.000-07:00

Advancements in blood work analysis excites me, because I've been a glorified lab rat or chronic pain patient, with multiple things that need routine checking. (such as various thyroid levels, iron levels, crp, ana, ena etc.) I've had to learn what different lab results mean, through wikipedia, and other medical research websites. But at the end of the long medical jargon definitions and explanation of numbers I am almost always left asking what are my tests really telling me?

Its great that there have been ways like www.myehealth.ca to find out online what my new test results are, but there may be an easier way to understand what they mean. It's one thing to have it accessible but its even better to have it legible and understandable. It's like having a book thats been translated from Arabic to English. Go read this article about Blood Tests getting a makeover and becoming more readable to the average joe. I just read it, and it excites me because it could be a large medical advancement causing patients to understand results in a simple way.

It means I can now make sense of the numbers in a way that I understand without having to spend hours reading up on a tiny test. Or trying to understand what the Dr said with his big words. At the end of which I would have wasted hours trying to interpret inconclusive results. All in all, its definitely worth checking it out for yourself, cause this is pretty awesome! When your done looking come back and let me know what are your thoughts are on it all? Below I've posted some of the pictures and feel free to use them and interpret your own tests, with the help of them. Also a handy tool to use in this discovery process is a converter to understand your levels in the right measurements. For example my levels of HDL were in mmol/l but with this handy converter I could type in my results and get it converted to mg/dl which is what these charts are in.

"The Basic Workup : The standard blood workup takes more than 30 measurements and can go on for more than four pages. All sorts of things can turn up in the report; the challenge for physician and patient alike is to find the signal within the noise."

"The Heart Disease Test

Alongside cholesterol tests and high-blood-pressure monitoring, the c-reactive protein, or CRP, test is widely used to spot people at risk for heart disease, the leading cause of death in the US."

"The Prostate Test

Short for prostate-specific antigen, the PSA test is one of the most common workups for men over 40—even though its reliability as a predictor of prostate cancer is controversial."

There is an article here about making this a reality.
The man behind the ideas company is here.
~ElysiaB

MRI Results

2014-10-20T16:09:00.001-07:00

Current updates on my journey through chronic pain, include (1) the flu during midterm season (2) trigeminal neuralgia flares up and an apparent degenerative disc. due to MRI results.

1)This flu has lasted at least a week n a bit and has been kind enough to join me through midterms with a side of brain fog that makes everything fuzzy. Thus in between intimate dates with my washroom I've been studying for midterms and desperately trying to focus. While taking exuberant amounts of vitamins, soup and green tea. I am doing my best, and when that fails I watch funny John Oliver video's and pin funny jokes to make me laugh :)

2) The MRI results showed an inflamed trigeminal nerve explains the paralyzing pains I've had in my head lately and I would explain it myself but I found I don't remember a lot of what the Dr told me as brain fog seems to cloud it out. However Ainsworth institute explains it as being, "also known as tic douloureux, trigeminal neuralgia is a neuropathic disorder involving the trigeminal nerve (the 5th cranial nerve) that has been diagnosed as among the most painful conditions known to mankind. While its overall estimated incidence is low (1 in 20,000), there may be significantly more people suffering from this due to misdiagnosis. Patients with frequently describe stabbing, burning, electrical shocks, shooting pains in the distribution of the trigeminal nerve that can last seconds to hours. Things as harmless as the wind or chewing have been known to bring on the symptoms. Several theories exist as to the cause, but as of yet there is no consensus." This seems to be somewhat related to the neuropathic pains that I've been suffering. Yet life goes on, my Dr. has lowered my Lyrica dose down to 300mg in the morning and upped the Nortriptyline to 30 mg at night to help with the pain. Then also added in Glucosamine, chondroitin, and MSM for the degenerative disc. Currently the Pain Specialist wants to pursue looking into the possibility of MS. And the Endocrinologist is looking into the reasoning behind my swollen thyroid, decreased function, multiple nodules and their sizes. So that is the medical side of life, and now back to studying, through brain fog to attempt midterms tomorrow.

~Elysia B

Never enough

2014-09-18T21:25:00.001-07:00

Lately I've been on-and-off reading Daring Greatly, which is a book written by Brene Brown through which she encourages us all to find our own ways of being vulnerably, living "wholehearted", and more than anything to dare greatly.

Today I know I dared greatly, because I came to school early for a small group

Before we grow up we must pay our dues and listen to the past, so that we can one day be great. Greatness will take courage and I don't think I am quite courageous enough to be great just yet..However in amongst a moment of self doubt there are moments such as right now. Right now in this moment I am alone, it is quiet, and I feel good. I think the new medication is helping my neuropathic pain as it has gone down and, I feel afraid to say it ...but, just maybe finally something is working.

Summer discoveries: Brownies, Knitted shapes, and Frozen herbs

2014-08-28T13:19:00.000-07:00

Top discoveries this summer:

1. Coconut Flour Brownies:

A handy tip for using or substituting coconut flour:

use 1 egg to every 1/4 cup of coconut flour required.

The recipe that I used to try it out was pinned on pintrest and can be found here, although I altered it a bit as you can see below and it was still amazing. Yet a tip about this recipe is that I found it was quite dry and crumbly so be forewarned. Perhaps coconut oil and an egg per 1/4 cup of dry ingredients would have been better. I will try it again, as it was so delicious that even the crumbs were inhaled.

Coconut Flour Brownies.

makes one 8x8 or 9x9 pan

1/2 cup butter (coconut oil)

3/4 cup brown sugar

2 eggs

1/2 tsp vanilla extract

1/3 heaping cup cocoa powder

1/4 cup organic coconut flour

1/2 tsp baking powder

1/2 tsp baking soda

1/4 cup dark chocolate chunks

To make your brownies:

1. Preheat oven to 350 degrees.

2. In a medium bowl, use a mixer to cream butter with sugar, until light and fluffy.

3. Add eggs one at a time, beating well after each one.

4. Add vanilla extract.

5. In another bowl, sift cocoa powder and coconut flour to remove lumps.

6. Stir flour mixture into wet mixture and mix until combined. Stir in chocolate chips.

7. Pour into a greased/oiled 8x8 or 9x9 pan, depending on how thick you want your brownies. Sprinkle with chopped nuts if desired.

8. Bake for about 30-40 minutes or until center is slightly set and springy, and the sides are pulling away from the pan.

9. Cool and enjoy!

2. Knitting a Hexagon Blanket:

After seeing it on pinterest and then being frustrated by only finding crochet patterns my search has ended and I have found that brilliant knitting pattern! So now I can begin a new project for my favourite old yarns to get used up by! Here is the pattern copied from Knitty, Vintage, and Rosy.

One Hexagon requires about 12 yards of wool

Cast on 79 stitches.

Row 1. And every odd row, Purl.

Row 2. K2T, K 10, *Slip 1, K2T, PSSO, K10. Repeat *four times. Slip 1, K1, PSSO.

Row 3. Purl

Row 4. K2T, K8, *Slip 1, K2T, PSSO, K8. Repeat *four times. Slip 1, K1, PSSO.

Row 5. Purl

Row 6. K2T, K6, *Slip 1, K2T, PSSO, K6. Repeat *four times. Slip 1, K1, PSSO.

Row 7. Purl

Row 8. K2T, K4, *Slip 1, K2T, PSSO, K4. Repeat *four times. Slip 1, K1, PSSO.

Row 9. Purl

Row 10. K2T, K2, *Slip 1, K2T, PSSO, K2. Repeat *four times. Slip 1, K1, PSSO.

Row 11. Purl

Row 12. K2T, *Slip 1, K2T, PSSO. Repeat *four times. Slip 1, K1, PSSO.

Row 13. Purl

Row 14. Slip 1, K2T, PSSO, Slip 1, K2T, PSSO, K1.

Break wool. Leave a twelve inch tail. Run end through remaining 3 stitches. Draw close and seam two edges together. Leave end for joining next hexagon.

The only problem is my pentagons are hexagons and I didn't notice the difference till i attempted to pull them together...I think I misunderstood a knitting term and instead of PSSO I may have passed one over, knitted the next and then passed the one back over the one I just knitted.....SOO I have a lovely Pentagon pattern now :)

3. How to Freeze herbs for the winter

1. Pluck all the bigger leaves and leave the smaller ones to grow

2. With your pile of bigger leaves and a knife, dice them into smaller bits

3. Melt butter 1/4 cup or so

4. In a ziploc bag dump in the chopped herbs and add melted butter

5. lay flat in the freezer

After a day or two you'll have fresh frozen herbs, freezing them will lock in the flavours. When you'd like to use them simply break of a chunk and add to the frying pan :)

~ElysiaB

P.S. Pictures will be added soon

A quick Update

2014-07-30T14:05:00.000-07:00

Dr. Update:

Went to the walk-in Dr to review my ultimately low thyroid levels and he starts off telling me how the Hashimoto's is effecting me and how my thyroid may be coming to it's end. Politely I ask how long it has and he states that based on the levels maybe a week or two and then it will be dead and turn into full blown Hypothyroid. Later the following week I see my Pain Specialist and he tells me that my belly swelling is do to the Pain med's (Lyrica) having Plateau'd and becoming less effective which has spurred on the development of more swelling and cognitively impairing symptoms. Which explains why I keep getting asked if I'm pregnant, not cool body, not cool. Isn't that a side effect everyone wants at this age... I'd say it was a below the belt symptom haha. Well that's the news oh and I'm also deficient in multiple area's so now I've added CLA, Selenium, Chromium to the docket of morning pills and will be started on a new pain med and decrease the old Lyrica.

In other words I will be re-experiencing the medication altering effects so we'll see how that adventure goes. It's always a dangerous trip when sailing into the sea of side effects. Your body takes on a state of illness until the storm clears and as a ship can get turned around in the fog, the side effects of new drugs and side effects of old drugs mingle and I couldn't say which is effecting me and which is not. As I'm certain they are both at war inside me and I just need to wait it out and get back to the harbour.
~Elysia B

laser

2014-06-11T12:32:00.000-07:00

So it's been a couple months of drought from blogging as sometimes I can not muster the words to cement my feelings, as so much is left uncertain with my condition. When I was young and in high school we went through hardships on multiple levels at school and at home, and there were things I was certain I couldn't ever come back from, at least not unscathed. And yet, looking back those parts of me healed, scarred but healed. Then there were times when I felt so broken and I felt like I could never get past it but things change and mended. Time did not change in a way that erased it but I did heal from it. And now going through illness I wonder how I can ever possibly come away from this unscathed? is there a way? The truth is I don't think you pass through hardship or loss and come out exactly the same. I don't think it's possible. I think you are forever change and respond to life accordingly. However, its important to recognize that this is not the end, you can not stop living because the grief of loss can swallow you if you let it, but you can't. When your at the end of your rope you must hang on and find away through it all.

Constantly, I push myself to be more, to be better. I get laser focused on what I want and have a tendency to lose sight of everything else. (like this blog, sorry!) A sad truth is, I lose sight of myself sometimes too. I love that I can focus, it's a gift of sorts, yet I need to manage it better as there is a time and a place for that. But, the cost is great if the focus of the lens is too narrow and so it must constantly be managed and readjusted to include priorities. By this I mean learning to prioritized goals in a way in which you are giving things like school work, house work, communication, job and relationship all an appropriate amount of time each week. When I laser focus on my practicum, I try to learn everything by devoting my time to making flashcards reading the training manual, and focusing on management of situations better. I learn it faster but then, my house becomes messy, my diners become a flop, my courses are neglected, and my husband gets grumpy. Pretty much everything else is half-assed but my focus is brilliant, and its not worth it. I've learnt that its important to look at the cost of whatever your doing, and to look at what is in your control. I see that the cost of my illness is great, all I can do is minimize the damage it does on other areas of my life by preparing for flare ups, that is all I can control about it. The practicum is a grand adventure I'd love to consume my thoughts with learning more about however I need to look at the cost of it, even though it is a great thing to do and be consumed by it doesn't mean that it being good does not cost. It costs time, and if I risk spending too much time on it inevitably something else will be effected by it. I'm finding that life is a grand balancing act and the most important thing to remember is that nothing, not even good things are worth the cost of your relationships suffering. Relationships at times need to be protected from ourselves. The Lens of my focus needs to be adjusted at all times to include people.

~ElysiaB

Rotisserie Chicken Soup

2014-02-04T12:40:00.001-08:00

I got up today very bummed out over my recent visit to the hospital where they poked, prodded, pushed, took blood test, did invasive physical tests (without buying me dinner first), and then ended with sending my body for tests. So after being on IV med's and finally having the infection since christmas finally-FINALLY gone. BUT still no relief of pain and no explanation of pain, I woke up today and was frustrated, I even felt a sense of forlornness towards my body and myself. Thus, when I looked in the fridge and saw that there sat a lonely rotisserie chicken that no one wanted, with a couple chunks taken out, I decided today is the day I make soup.

How to make chicken soup from scratch:

Taking out old cook books passed down to me, I carefully flipped through pages and found that it's simpler than I thought so get ready for this:

1)You take your chicken, deboned or not...and put it in a pot of boiling water. I just took my whole chicken and drowned it in enough water to cover it.

2)Add spices of your choice. I added 4 cloves of garlic chopped, a bay leaf, dash of sage, dash of dill seed, some greek spices, and parsley.

3) Leave it to simmer for 3-4 hours or if you want it fast you could use this recipe. It is suggested that you add veggies to the soup in the last 1 hours of simmering.

And so I wait and ponder what I will do with a pot of chicken soup as I don't know that we can eat all of it I may have under estimated how much the chicken could feed. It's like alone the chicken will feed a family yet in soup it tenderizes and separates into double the amount it was before.

~ElysiaB

Mortality

2014-01-16T12:41:00.000-08:00

I write out a new post an update of my mortality, and I am faced with opening up the truth that I don't want to admit, and so I cowardly delete the post. I go through the christmas season when asked I say "I'm fine", the shared charade continues Surgery comes and passes as christmas comes and passes. The new year comes and the old year becomes memories, when asked I say "I'm recovering but I'm fine". After all isn't that what I'm supposed to say? I've tested the waters and anything different from "I'm fine" people seem either ill equipped to respond to or are unaware of their own expression of recoiling. Sometime's I wonder why? Why, do people recoil when hearing of someone else's lot in life? If I say I've been struggling with infection some recoil, others show concern but then change the subject immediately or walk away, and others are compassionate but don't have words. I wonder if hearing about illness, reminds some of their own mortality. In our culture we can go weeks without running into reminders of mortality.

The nightmare before Christmas has come and pasted leaving me with reminders of how fragile my system is. I went into surgery and the nurses and Dr.'s at Women's Hospital were night and day compared to Abbotsford Hospital they seemed as though they really cared about me and how I was doing, unlike Abbotsford where they asked me to stop crying cause it bothered them. After surgery I awoke to a nurse waiting close to my bed asking how my pain levels were. Going home I didn't realize how much pain I was actually in and how important the whole staying laying down is to recovery after all the pamphlet said I could be up and walking around in a couple of days. However, the pamphlet doesn't know me very well because although I was up and walking around I was also very quickly back to bed throwing up most of the first and second days afterward. The following week we ran to this house for christmas here and to the other house for christmas there and then ran straight back to the nearest emergency centre as I was in too much pain and missed the last christmas because I was having uncomfortable, invasive exams and tests run on my body that was still unusually bleeding. Aside from the bleeding I had contracted a bowel infection and bladder infection. Yah now I talk about these types of things openly...when did that happen....couple years ago when this became my life. It's not awkward, cause really these things just happen to me now. I hadn't realized that I nonchalantly talk about these sorts of infection until it occurred to me that people aren't like "oh no" response anymore they're just like "oh" cause that's normal now....

Acceptance is hard work. Sometimes in life we need to except that we all are asked to walk different paths so maybe when you talk about your life events they will be different from the norm, mine certainly are, but its okay to be different. Coming to a place where that's okay, is a daily thing I'm working on and it doesn't always work. Some days I don't want to accept that my life for the last 6 years has been plagued by a sickness that I don't understand but in spite of a lack of understanding it still controls me. I don't want to accept that I have a different path to walk and some days I just want to give up. But, I take a step back and get back up and continue going onward. This became my life wether I like it or not but it's okay today my pain has flared so I'll take a time out and live to fight another day. It's important to know when the pains too much and when to take a time out. A "time out" doesn't mean folding in the towel it just means taking a break so that you can get up again later. For me a time out means I go lay down and plot my next moves from bed.

~ElysiaB

Quick unwilling update

2013-11-27T19:45:00.000-08:00

These past few week have been a bit of an unexpected landslide, as admittedly the new birth control has been angering my cysts, intestines, and neuropathic pain. The pain it's caused, has lit me up like a christmas tree with varying levels of pain switching as though it were on a timer. The most bothersome symptom is that I keep getting electric jolts of pain in my hand and end up dropping whatever I was holding, i.e. cell phone, fork full of food, mug I liked...etc. I called the Dr.'s office and they told me it's too vital to the surgery to go off of it would be jeopardizing the surgery that's already been moved up to December 20th. So I am stalemated by drugs that cause wicked side-effects without other options. The Cysts seem to be trying very hard to fight off the BC pill as it tries to shrink them, throughout my intestines a war is being battled, and I am in turn, in the bathroom enough times to be Clark Kent transformed into superman three times over. The exhaustion I feel is almost unbearable but, I continue, if I nap in a feeble attempt to rest I just lose time, as I will wake from the nap feeling unrested and groggy. When I sleep at night, I am told I can't reach deep levels needed as my pain levels are too high thus, chronic fatigue sets in.

However, looking into the IUD that my Dr. recommended I allow them to insert, I did my own research and found some shocking law suits to the IUD company Mirena, which is her recommendation. As well as the fact that they cause min-abortions monthly as they do not stop fertilization, it seems they just cause a whole ton of bad thing, abortions, birth defects, cysts, blood clots, etc. It's sad they don't give you all these facts when suggesting you get it implanted inside you.

Just one of the many things I've been going over in preparation for surgery. If left alone with my own thoughts all I can think of is one looming thing...surgery got bumped up to a week after final exam's and 4 days before christmas....Dec. 20th I go into Women's Hospital and they will take out cysts that have grown, or have formed, and they will be taking out the scar tissue that has attached to organs, or intestines after some cysts have burst and they will cauterize the area's that need that too...I push hard to keep going everyday, I attend classes, I am working on two 12 page papers and I am trying so hard but most of all I just want to sleep....eat some cream of broccoli soup...and sleep...I just want to numb this but how..this pain might not kill me but its starting to feel like a work in progress on top of papers at least...

~ElysiaB

Pumpkin Bread recipe

2013-11-05T17:26:00.000-08:00

So after midterms in my exhaustion I summoned the energy to bake as baking is oh so comforting. My Dr. has called and on Dec. 20th I will go in for a very necessary surgery that to be frank scares me. I have been slice and diced before and now I'm short a gallbladder, which is so not cool. The recovery time for this one is 6 weeks as it's quite invasive. So as my nerves jitter I wanted something productive and comforting to do and so I put two n two together and arrived on the conclusion that:

I like pumpkin bread

and it is fall

which equals it is time to eat pumpkin bread :)

The leaves change as I sort through recipes and my pumpkin stares at me, making me feel guilty for not giving it a greater purpose. But in my searching I have come across a that looks wonderful, upon further research into it I have found the original recipe from which it came. Looking over comments of others who have tried it out I tweaked it a tad here and tweaked it another bit there and so finally below is my altered recipe for delicious pumpkin bread as best I could make. Although being me, I really like to do everything the hard way...just kidding I LOVE learning how to do things from scratch so I scoured the internet and stumbled upon this recipe for making pumpkin bread from scratch. So I followed instructions:

Part One: Make pumpkin puree from my pumpkin

1.) I cut my pumpkin up into 4 quarters

2.) I gutted the gross gooop out of my pumping

3.) I put the quarters on to baking sheets, preheated the oven for 350 and let it cook for an hour.

4.)When it comes out scrap off the flesh, which is now musshy and slips off in places where it's bubbled.

5.) take the chunks of soft mushy pumpkin and put it into a bowl, and start mushing it with a potato masher or fork, then use a hand held mixer to mush the rest up into puree and there you have it pumpkin puree.

Part Two: Make pumpkin bread

Since I had soooo much pumpkin I came to a cross roads of problem number 1: half of my pumpkin.... = 6 1/2 cups blue bowl ...recipe calls for 2 cups pumpkin..sooo I doubled the recipe:

Ingredients:

2 cups butter

6 cups sugar

8 eggs

6 2/3 cups flour

4 tsp baking soda

1 tsp baking powder

3 tsp salt

4 tsp cinnamon

4 tsp nutmeg

5 tbsp ginger (worth it!)

2 tsp cloves

1 1/3 cups water

4 cups pumpkin

Directions:

1. Cream together margarine, sugar, and eggs.

2. Combine all dry ingredients and add to creamed mixture alternately with water and pumpkin.

3. Beat well.

4. Pour into well greased loaf pans or muffin pans

5. Bake at 350 degrees for 60+ minute for muffins, (for loaves maybe more) or until toothpick comes out clean.

This recipe was wonderful, however my suggestion is that it is baked a bit longer for a oaf as they turned out a tad doughy inside.

The conundrum continues...

2013-10-04T13:37:00.002-07:00

Like a mosaic I feel broken into so many fragmented parts of who I am, dumbfounded by what this mess of pieces could possibly turn into. I feel as though I have neglected this blog as I have not wanted to share these hard feelings I am having, so I have not voiced them in entirety or made known their existence because sometimes I feel like if these thoughts are outside of my head then they become real. And that would make them a part of my reality. However, not saying anything about them will not make them disappear. A few weeks ago I finally went into Vancouver for the long awaited appointment at the BC Women's Centre for Pelvic Pain and Endometriosis, with their Surgeon. In preparation for it they have you watch rather graphic video's on why there is endometrial pain and how they can help with removal of tissue and cysts. I went in with an understanding of what we would be talking about and how it pertained to my situation. However, I was not expecting that the pain mapping would take place during that appointment or what it would entail. I was asked if we could do the mapping during the appointment, I agreed to it immediately part out of naivety, and part out of desperation. I soon realized just how unaware I was. As it included causing a lot of pain in order to find (map) where the most pain was through the use of an EV Ultrasound, which to be frank is similar to being beat with a stick from the inside out. I walked down hallway from her office in pain with tears streaming, and on the way out I was handed a packet of information on the surgery that I had also agreed to. With the promise of a surgery to take away a major part of my pain I realize just how desperate I've become. Surgery in January.... Merry christmas and Happy New Year to me....?

In the event that you are curious about said video's they can be viewed here: http://www.womenspelvicpainendo.com/resources-for-patients/

Flipping through the info packet I see that research has shown that people with endometriosis have a 40-50% chance of not being able to have kids. Reading further into the packet I learned that the chances of becoming pregnant go down with age and after reviewing this I researched further on the subject only to find that they were correct. Go figure a research facility being correct. This felt like an added bruising to an already low blow. The days that followed seemed full of deflected frustration. This is a curve ball thrown at my revised Plan what is it D? Now after much revisions were onto Plan E as in Exceptionally different, Exasperated by changes, Exhausted by revisions..... since my Plan A was destroyed by this whole getting sick matter and then Plan B was taken out by the realization that the pain was increasing and not going to go away anytime soon then Plan C was revised due to the naivety that there was a name and cure for what I had and that what I had was a singular disease. A lot has changed from the days when a plan seemed like a good idea. And I think that's just it, having a plan is a silly idea that I have some sort of control over what happens to me, these events are out of control and that is a hard thing to come to terms with.

Now that is a lot to think about and it has plagued my thoughts up until this week when I saw the Naturalpath doctor who had the results from his last lyme test. It seemed like a hail marry when he asked to do one last test after the rest had come back negative. And perhaps it was, but the result of this more specific test unveiled a less specific answer. For once in a couple years it was positive, yet is neither here nor there as it is a specific test called IgM 31 kDa Epitope and was positive, but for what? \

Well I tried breaking it down into english as lab's and doctor's seem to complicate things further than they need to be...

"IgM refers to those antibodies that are produced immediately after an exposure to a disease, while IgG refers to a later response. Given the cyclical nature of the infection and the slow lifecycle of Lyme bacteria, you can pop positive on either type of test both weeks or years into an active infection. Your body is essentially getting reinfected constantly."

The 31 kDa epitope test is to confirm (or not) that the reaction seen on band 31 on the western blot is due to borrelia rather than some type of virus. Band 31 has some cross-reactivity with viruses, meaning if I had one of the viruses that causes cross-reactivity at the time that I was tested, then the reaction at band 31 may be due to the virus and not borrelia.

So then in conclusion, I could be positive for lyme or I could be positive for a cross reactive virus. Thus the choices are still slim and ever so complicated. The Dr thinks that we should continue with discovering wether or not it is Lyme which would include 2 weeks of Herx antibiotics and then retest. Herx, apparently hurts similar to chemotherapy. This treatment is a debatable option as it's an undetermined option as politics surrounding wether or not the medical board will allow the use of IV antibiotics in the treatment of Lyme. Thus I may or may not have something that I may or may not be able to be treated for. The conundrum continues... And so now you know the things that are causing me to worry, this isn't even including the fact that I have three midterms in two weeks. I'm not sure where I am headed, I know I need support right now because these are hard circumstances but things will change as life is not a series of still photos it is a fast paced action movie and I'm not giving up I will press onward in faith that things will continue to change as they always do and this will pass as it has to. There are only 60 minutes in an hour and then that hour is gone, it can not rewind thus the scariest most uncertain times in life must go by as minutes in an hour it'll fade away. And once it has gone something new is born from it because we are ever changing. We learn something new, incorporate it into our being or discard it but either way we are changed by it's presence, as we have knowledge of it's existence, thus we are not the same people before who were unaware. Things change, circumstances fade away, and life is consistently being reborn.

~ElysiaB

LIfe is hard but so very Beautiful

2013-09-05T09:25:00.000-07:00

Yesterday, I awoke in a groggy daze when my vision was still kinda blurred. And then as if remembering that it was time to get up, my body ached it's morning time ache, and I scrambled to get my legs beneath my body. The rest of the day, to be quite honest was a blur, there was stuff on my to do list so I raced here and there, all over the house... 'twas a cross between married-wifely duties, and oh-shooooot-we-have-fleas. So I whipped thru that list, then went out for coffee, came home and realized I have no idea where that cat the vet told me to watch went... looking high and low, in all her favourite hiding spots, the games box, on the sleeping bags, in the closet, on my chair, above the microwave, and everywhere in-between but alas no cat was found. Until I realized I went into the laundry room for a minute before getting called away...and upon a further search there behind the hot water tank is a little tiny cone surrounded face...poor snuffle-ufagous. Then suddenly it hit me, that growly angry tummy, I stopped everything and looked down at it like, oh dear, that was me...and in that moment I realized I hadn't eaten lunch.

As I stopped to think about it, this summer was harder than other summers past, it hurt more. As one DR. appointment after another dragged the summer away, waiting on test after test, and it was just plain hard. Monday I was afraid, and I cried out of pure frustration. This may seem strange if you've never endured chronic pain, or the frustration of our canadian medical system. Afraid because this school year has arrived and being on higher doses of Lyrica (strong pain medication) I feel a bit more energetic, like I can handle more. Thus I have challenged myself and taken three courses this semester. However, my fear is encouraged by the daunting voice in the back of my head telling me I can't do it, that I'll need surgery and then how will I continue, I could get sicker, and that life right now is too hard to continue to challenge myself. That voice is my own worst enemy and I don't agree with it. It makes me sad thinking of those fears yet I know I can push a little harder, I can go a little further, and every day I do it. Giving up is the easy way out. Life gets hard, the pain gets worse, but I feel like the little train that could, on those days I just keep saying "I think I can, I think I can...I know I can, I know I can..." there's so much wisdom to be found in children's books that apply to us even as we get older.....I would go as far as to say that those books apply more to us now as adults than as kids. There are struggles that I don't want to walk thru, there is sorrow I don't want to bear, but there is also hope. Hope and patience are virtues that as long as we hold on to them, the pain might not be so hard to bear each day.

When it is hard to hope and our patience seems thin we look up to and ask for help to a very big God who truly understands. And I think the healthiest part is that we can dialogue with God, about the pain he has asked us to walk thru. We can even go so far as to get angry as many others have in the past. We can come to him with all our emotions and in my opinion that's where the depth of my relationship with God dwells, in the ability to tell him I'm really frustrated, mad, confused, and scared because I don't understand why he has given me this kind of pain. Often I think of Job and his dialogue with God, I think he learnt more through that dialogue than he did in any devotional times he may have had, because he got to express his ugly feelings, the ones that most think you can not bring to God. In doing this he learnt to better trust God's judgement, he was put in his place when he got out of line, and in the end had a fuller understanding of who God is.

I think expression is hard because similarly with the church you might feel like your burdening the church with the heavy path your walking, when the church should be a place to share your burden. Often we don't bring angry emotions to God because we think it's a bad thing to do, we think it's too heavy, or inappropriate. He's a really Big God, that is bigger than your view of him. He can handle a child getting mad at him, just as a parent can handle sitting with a child that's angry and doesn't understand. I think if we make our relationship one-sided and share only the good stuff or only the bad stuff, or even only ask him for help but never say thank you...then perhaps we have put God in a box labeled "use in case of______". He is big and he is to be feared but he is good and also wants to know all the details of your life, why not try him? Test out your relationship with him by offering more of yourself, more areas of your life. He is not a genie, He is a father, a creator, and many more. This is my struggle I try to do it on my own when he's always there to help carry the load. It's easy to be frustrated with the church and complain that its like this, or like that, because we expect more of christians yet forget that they are just human trying thier best and in no way are they infallible. We get mad easily when the church or christians let us down yet do we tell them? It is not a good reflection of God when christians fail to be christ to each other. But as Ghandi said we need to be the change we wish to see in our world. Thus I want to be someone friends can come to, if you have a heavy burden let me lighten your load, if you need a cup of coffee and someone to listen I'll drop what I'm doing and put on some coffee.

~ElysiaB

My own everest

2013-08-24T09:33:00.000-07:00

With a fiery rage my legs burned, there was a sharp pain-filled lightening storm brewing in my back and my shoulders feel like the literal weight of the world has crashed down on them...yikes. So what has happened to me, you ask....well dear friends I have been victorious today. I hiked. enough said right!

I know I'm very proud of myself! It's an incredibly big deal, I feel like a party should be thrown. It's been.............I don't know how long since last I hiked, and I think it showed just a little bit as my huffing and puffing gave the big bad wold a run for his money. The majority of the time I hiked I couldn't help but think about the gossip that would follow, I mean sick people don't hike do they? and oh how much better I must be feeling now that I'm hiking. It's been bad enough not looking as sick as I feel but, oh the scandal of hiking! LOL.

All that comes to mind is the quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”― Albert Einstein. I'm having a fish-being-judged-by-how-well-it-climbs-trees-week....do other people have those?

The thing about a fish climbing a tree is that it is not a probable thing. Thus if it does it wasn't it may not come down once it is up, or it may not do it again. Or in my case it may have been told that it probably couldn't climb the tree at all.

~ElysiaB

Can't stop, Won't Stop, Lost in Translation

2013-08-17T00:26:00.000-07:00

“Just as my pain belongs in a unique way only to me, so I am utterly alone with it. I cannot share it. I have no doubt about the reality of the pain experience, but I cannot tell anybody about that experience. I surmise that others have their own pain experience, even though I cannot perceive what they mean when they tell me about it. I am certain about the existence of their pain only in the sense that I am certain of my compassion for them. And yet, the deeper my compassion, the deeper is my certitude about the person’s utter loneliness in relation to his experience.” (Illich, 1976).

Amazing to think that pain as it was inflicted upon a person it then belongs to them, in spite of not wanting it to belong to me, it is mine to bear. And similar to how I cannot share the feeling of this pain I cannot put into words how it feels....I can summarize that I hurt really badly today, that I have a sharp pain from under my right ear coursing down to my collar bone, or that I've been to the washroom 4 times to have my food voluntarily leave me still undigested. I can state that I can feel the pain of cysts inside my pelvic region yet, these descriptions all fall short of fully convening how I feel. I think that there is a point where words fail me, just as my body has reached point of failing to digest the simplest foods. This is a special place to be, between a rock and a hard place. I cannot expect you to understand how I feel, or why it does not show all over my face, yet too often I make that mistake. I forget that others don't know, and I judge them based on what they do not know, for that I am always sorry. I say always because in fact it happens more often than I know. I get frustrated that an acquaintance is baffled by my healthy appearance because I go through so many untold battles. But, that is where my error lies. These battles are not untold because I cannot tell them but they are untold because words would fail me to accurately depict the feeling and gut wrenching that enriches these battles. Words can only convey so much meaning before they fail to depict everything and it would be akin to telling a tale in Chinese and black and white, the language would be foreign because the pain is foreign and the feeling would be black and white because they are feelings only one who has been there could possibly colour in.

These past few weeks I have been learning the difference of a couple words and their relation to chronic pain, in thinking that they may help someone else I thought I'd share my lesson with all of you. Often I will say, "I'm sorry I can't ________, because I'm in too much pain". Letting others know where your at is a good idea, saying I can't but continuing anyway makes me a liar. I don't want that, in order for others to know that "I can't" actually means "I can't", I have to rephrase my wording as "I'm sorry but I won't be able to do that today" and then actually push myself not to continue, because in the end I only hurt myself. This is challanging because with all this pain I feel that I fall short in so many other aspects of life that I push myself harder to do things that I previously say I can't do. I need to let myself suck it up and accept that I won't be able to do certain things some days. Because communication is very important in relationships in general, yet when dealing with chronic pain open and honest communication is more important than ever.

Relationships hard in normal everyday settings because we have unrealistic expectations of other people around us, with the kind of pain, fatigue, and other issues I deal with relationships have grown an extra language barrier. The language of pain is one few know and even less understand. I think that in order to have better communication with people who don't understand this language of mine, it is best to treat them like ESL learners. It would be wrong to hold poorly worded comments against a person who was learning english, and similarly it would be wrong to hold poorly worded comments against a person who doesn't understand my pain. We have misconceptions that when a comment is said it is meant the way it sounds, yet I feel most of the intended meaning is lost in translation. Comments like, "Oh I thought she was better", "Can't she do a simple job", or a personal favourite "But, You look fine", or...well, I digress. These comments translate to me as the person is judging me based on appearance and since I look great, it must mean that they don't believe me that my pain is what I say it is. It hurts, cause I feel like thier calling me a liar, or being mean. However, they aren't really....Really. at least I hope not. I mean I often feel hurt cause of these little comments that shouldn't matter, because in an ESL perspective they aren't being mean, they never intended the comment to translate like it did. They just made a poorly worded comment based on their lack of understand my language. So I breathe deeply and tell myself "they meant well" at least they took the time to show concern for the situation...that counts for something. I think if I spoke german with the tiny tiny vocabulary I know, surely I would say something very very wrong and would hope that the person I spoke it to would understand that I didn't know what I was saying and thus can not be held accountable, I didn't curse at them on purpose. I would hope that they would look past my words and try and see my well meaning heart, and surely an embarrassed face if they informed me of my transgression eek!

~ElysiaB