Elysia B

A Journey through the looking glass - learning to balance and accept the Unknown.

Thursday, 16 April 2015

Tool kit for Getting back up

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 

Tuesday, 31 March 2015

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

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
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 


Tuesday, 30 December 2014

Final Exams and Fibro Flares

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

Wednesday, 17 December 2014

Wasted Potentials?

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



    

Thursday, 4 December 2014

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

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 

Friday, 14 November 2014

How the common cold effects Fibromyalgia




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:

Saturday, 1 November 2014

Blood Work Advancements

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








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