Showing posts with label chronic. Show all posts
Showing posts with label chronic. Show all posts

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:


P.S.    A few pictures I found funny:

Monday, 20 October 2014

MRI Results

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 

Thursday, 16 January 2014


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.


Wednesday, 27 November 2013

Quick unwilling update

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 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 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...

Friday, 4 October 2013

The conundrum continues...

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:

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.



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 j...