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








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, 28 August 2014

Summer discoveries: Brownies, Knitted shapes, and Frozen herbs

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 

Wednesday, 30 July 2014

A quick Update

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

Wednesday, 11 June 2014

laser

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

   
 


Tuesday, 4 February 2014

Rotisserie Chicken Soup

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

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