Tag Archives: fibromyalgia

Fearless Healing: Finding Strength Within Weakness

Such an incredible post. I have attempted to say many times exactly what Shelley has managed to say, as if her words came out of my own heart.

Embrace the body's innate healing mechanisms

The world constitutes strength as possessing physical power, societal power, and financial power. In illness, we learn great insight and wisdom on this subject. We learn what most do not learn until they are elderly. Weakness has nothing to do with muscles, fame, or fortune. It has everything to do with facing unimaginable heartache after heartache, allowing ourselves to break down and be human which renders us as desperately vulnerable, and then having the courage to wake up and face yet another day.

In fact, all of the aforementioned attributes regarding the world’s take on strength possess the power to quickly turn themselves into major weaknesses. Furthermore, they possess the power to turn mankind into animals. As individuals facing struggles unbearable to most, we are endowed with the great gift of gaining perspective on such a crucial matter in life.

We change dramatically the moment the doctor mouths a diagnosis…

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Health update

So it occurred to me that I haven’t written about my health lately (I’ve apparently had other stuff on my mind…I wonder why that is? :/)

So I guess I’ll write an update…

First of all, I have been having a surprisingly good few weeks…so good that I’m literally waiting for the hammer to drop; any day now I’ll wake up and not be able to walk or something…things have been just way too good. I’ve been sleeping (for the most part) a normal amount, fatigue has been way less than it usually is, and pain has been lower than it has been in over a year! (Probably longer than that!) Also I have had very minimal twitching and no electric shock pains for quite a while.

Here’s what I’ve been doing:
– been getting better at gluten free/ sugar free eating
– added magnesium and vitamin D supplements, and vitamin B12 injections
– added Oil of Oregano supplement (to combat candida, more on that in a minute)
– been much better about taking my probiotics
– started drinking apple cider vinegar (also to combat candida)
– kept up with weekly chiropractic/acupuncture appointments
– added flax seed into my diet almost every morning
– kept up with adrenal support cocktails also almost every morning, and some afternoons too
– oil pulling every morning
– dry brushing before baths/showers
– started making kombucha…although I have not drunk any yet. That’s a post for another day, in about 2 weeks when it’s ready!
– preparing to try coffee enemas (also a post for another day, once I know how it goes!)
– working on understanding the results of my genetic testing, that shows quite a list of genetic mutations…most of which effect my ability to process vitamins (explaining my very low vitamin D and B12 levels!) Perhaps more on this when I understand it a little better…

So as you can see I’ve been busy working on my health, even if I haven’t been blogging about it!
I have no idea which of these things is causing me to feel as great as I do, but I’m not complaining!

Although there is one problem…I have a long anticipated (and very expensive!) appointment with a specialist coming up in about 3 1/2 weeks. “What’s the problem?” Right? Well, those of you who are chronically ill will understand…but it is the worst possible thing that could ever happen to be feeling great when seeing a new doctor for the first time. Just trust me on this one…

So what’s a girl to do? Hope I wake up feeling horribly crappy sometime soon, or pray that this doctor will be willing to ignore the fact that at the moment I look like a fairly healthy young woman. Personally, I’m hoping for the first scenario, as crazy as that sounds.

What is candida you ask? Read this : http://www.thecandidadiet.com/candida-symptoms/

I have decided recently that what my primary care doctor keeps calling “a systemic yeast infection” should actually be called candida. I have SO MANY of the symptoms on that list (although yes, they could almost all be caused by other things). So since many, MANY rounds of diflucan (anti-fungal medication) from my doctor over the last 4 years really haven’t done much good, and most recently a round of ketoconizole (stronger anti-fungal medication) didn’t do much of anything, I’m going to take matters in to my own hands. I have added oil pulling, apple cider vinegar, probiotics, and oil of oregano pills to my routine, as well as changing my diet, and I already see more of a difference in my symptoms (mostly the thrush issue) than I have ever seen from rx anti-fungal medications. I have also successfully warded off 2 vaginal yeast infections so far before they got too bad using garlic.

Drinking the apple cider vinegar did cause what is called a herx reaction (http://medical-dictionary.thefreedictionary.com/Herx). A herx reaction is essentially a build up of dead things (in this case yeast cells) in your body, that accumulates and makes you feel like crap because it is more than your liver can manage to detox out of you. After about a week of gradually increasing the amount of ACV I was drinking per day (starting with 1 t. and then 1 T., then 2 T. etc.) until I reached 6 T. per day, I started to feel like CRAP. Like I mean I had a migraine complete with aura and sound/motion sensitivity for almost a week, and then horrible fatigue and shaking. So I have stopped the ACV for the time being, until I can work on detoxing better so that hopefully I won’t have such a bad reaction when I start again, or at least I will have ways to help my body through it.

Anyway, that’s what’s been going on! Just working on kicking candida’s ass, taking care of myself, and getting ready for this specialist appointment!!

Resources:

Info on oil pulling: http://mamanatural.com/how-to-do-oil-pulling/

Info on coffee enemas: http://www.thewellnesswarrior.com.au/2011/11/wellness-warrior-tv-how-to-do-a-coffee-enema/

Info on kombucha: http://www.thekitchn.com/how-to-make-kombucha-tea-at-home-173858

Info on apple cider vinegar: http://www.mindbodygreen.com/0-5875/15-Reasons-to-Use-Apple-Cider-Vinegar-Every-Day.html

Info on dry brushing: http://m.youtube.com/watch?v=0QpQZyze3Yk

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A Terrible, Horrible, No Good, Very Bad…Night

Yeah, that pretty much sums up the night I’m having.

You know how you know it’s a bad night? When you’re laying, half on the bed and half off it, just staring at the floor, because you attempted to sit up and couldn’t do it. When you’re brushing your teeth sitting on the toilet lid, supporting your arm on the counter just so you can hold the toothbrush. When you can’t even swallow enough to get your pills down. When the thought of making it across the room, where there are no walls or furniture to hold on to, is absolutely terrifying. 

My body is full of concrete, can’t move it, won’t move it. Even now, typing this, only my fingers can move. Yet my entire body is twitching in random jerking movements, somehow it can move itself, just can’t move it…apparently.

This twitching really freaks me out, I have to say. It drives me crazy; it hurts and it’s exhausting, and it scares me because I don’t know what is causing it. I have a referral to a neurologist, but I haven’t called yet…I’m terrified to go, and have them tell me “oh nothing is wrong with you”, AGAIN. After running a bunch of annoying, usually sucky and painful, tests…of course. 

And the pain…oh the pain. That is all I will say about that….

Add to all of that the fact that it is almost midnight and I am not in the least bit sleepy…perhaps due to all of the miserable-ness. Regardless, even after taking Benadryl, here I lie, wide awake. At least if I could fall asleep things would (probably) be better when I woke up…

Am I whining? Yep. Deal with it. Tonight I don’t care, I’m allowed.

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SO much excitement… :/

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Let me just tell you how thoroughly excited I am that these babies are back in my life. (Can you hear my sarcasm?)

After quite a few years injecting myself with first methotrexate and enbrel, then vitamin B12…I have really enjoyed the last year or so where needles have not been a fixture in my household.

Oh well, here we go again I guess…this better freaking help me feel better!

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Who the f@*$ am I?

Finding yourself is not a comfortable process, nor should it be. It is petrifying. — How to Find Yourself When You’ve Lost Yourself, Rebecca Lammersen (From Elephant Journal)

 

So I was reading Elephant Journal tonight, as I have been a lot lately (there is something about the deep thoughts and positivity that has just been soothing to my soul) and I came across this piece written by Rebecca Lammersen about finding yourself. While I loved the article, the writer uses words like “over time” and “began” to describe how this feeling happens. I do not think this is how it happens, at least not for me; I seem to find myself in a situation that slaps me across the face and I wake up and say “who the f@#* am I?”

Like now, for instance. 

I don’t know where along the way I lost myself and I don’t think it’s the typical “I’ve changed who I am” type of issue. I think it’s more like I’ve allowed myself to become invisible; I’ve sunk so much of myself into my husband and my relationship, and the stresses of life, that I’ve been slowly disappearing for a long time. Being chronically ill has cost me essentially all of my hobbies, my passions, my goals in life…so I don’t even have that to give myself definition. Not that long ago I was proud of the fact that I am a wife and a chronic pain survivor, but in the last couple of weeks I have realized that that should not be ALL that defines me. I can be so much more than that. 

The process, however? Absolutely petrifying. 

 

 

http://www.elephantjournal.com/2013/11/how-to-find-yourself-when-youve-lost-yourself/

 

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Changes

Yesterday I embarked on a new quest to better my health…clean eating. I have cut out gluten, sugar, and most, if not all, dairy. I have read quite a bit of research, plus heard many many personal stories of how this diet has improved people’s health and lowered their pain. This is also at the suggestion of my doctor, chiropractor and physical therapist. My doctor especially recommended it because I have a serious issue with chronic, systemic, yeast infections that have been unresolved with antifungal medications for the last 4 years. So I decided to try it.

I’ve been told so many times in the past, by so many doctors and well-meaning friends, that I needed to do this, and I have always refused.
I didn’t realize until I started this exactly why I was eating the crappy food that I was; but I think now that I felt it was the only area of my life where I could be normal. I never feel normal, it’s not normal to take the amount of medication I take, or be limited in the things I can do…so I figured if I could at least eat what I want, when I want, how I want…that was something. (There’s the psychologist in me coming out!)

The problem is that if all these people (and it’s a LOT of people) are right, then I’ve just been making myself sicker this whole time!

Time for an experiment!

Yesterday was my first day, and I think it went surprisingly well. Probably because it wasn’t all that different from what I used to eat when I felt well enough to put energy into losing weight.

Breakfast: green smoothie, handful of dry cereal (I screwed up and didn’t read the box before I bought it, so the cereal does have some sugar in it. I won’t make that mistake again!)

Lunch: leftover stir fry with chicken, over rice; homemade hummus and carrots

Snack: apple and a handful of veggie straws (again with the sneaky sugar! Luckily they weren’t my veggie straws, I was at work, so I won’t do that again either!)

Dinner: pork chops and zucchini on the grill (I marinated the pork, and AGAIN there was sneaky sugar in the marinade! I have to get better about reading labels!). I wasn’t thrilled with dinner, I think hubby over grilled the pork so it was dry, and the zucchini was just bland. Oh well, better luck next time…I’ll be looking for other ways to do the zucchini.

Snack: rice cakes.

All in all, not bad! I didn’t starve to death and I didn’t even feel like I was missing out on things. Today on the other hand…I’d really love a big bowl of creamy Mac-n-cheese right about now!

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Dear body…

I’d like to carve out time and space to address the resentment and abuse of the vessel that has carried me through these last 29 years.

I’ve spent many years and many more dollars poisoning this body with cigarettes, alcohol and a colorful list of drugs. I’ve extended the damage with a misguided perception of what would improve this body’s outward appearance; I’ve starved, dieted, binged, purged and starved again in bouts of desperation.

I’ve run and run until my joints could no longer support the repetitive impact of foot to pavement.

I’ve cut in the face of emotional pain to sit meditative in the presence of physical pain.

I’ve looked disdainfully at thighs that were never slim enough, breasts that were never nice enough, hair that was never thick enough, and freckles that would pigeonhole me as “cute,” but never sexy.

Self-reverence was a myth and I was hopelessly rooted in personal reality.

In 2008, I was offered a final betrayal in the form a diagnosis. My reumatologist confidently checked a box that would never go unchecked. I was diagnosed with an auto-immune disease. Congratulations, Sara. You have Lupus.

In a way, my diagnosis represented some twisted, poetic justice. After years of mistreatment and neglect, my body finally rejected the source: me.

It’s hard to wrap your brain around it, a war being waged under the surface of the skin. My body was in a constant state of inflammation. Confused about which cells were the good guys and which were the bad, it just went after them all.

My arms and legs would ache and throb. My hands, suffering from the associated arthritis, took my career as a massage therapist away and impeded simple tasks like opening jars and writing.

Lab tests tracked my wavering system. Numbers for inflammation, numbers for kidney function, numbers for complement levels; they all rose and fell bringing with them new “risks” and “concerns” that I refused to cope with. Instead, I tracked the rise and fall of denial and despair. I was tired, I was weak, and I was extremely bitter.

But with this letter, I intend to apologize for all that. I’d like to apologize for the damage I’ve done, and forgive my body for its current confusion. I want to be a voice of reassurance, not self-deprecation. I want to establish trust, because I’m not the enemy, not anymore.

My dear, dedicated body,

From this moment forward, I vow to feed you with clean food and positive thoughts. I will water you religiously. I’ll seek nourishment for your physical form, but also for the spirit you so tirelessly protect. I will strive to understand you, in all your delicate complexities, so that I may serve you into our old age.

I will accept my flaws and perfections in unison as the yin and yang of my being. I will appreciate my creaky, stiff hips as much as my bright, hazel eyes. I will revere my freckled skin as authentically as I revere my smile mid-laugh.

I vow to celebrate the successes of every single day. I have been granted the ability to get out of bed, however labored or stiff, without the use of a cane or a walker or a wheelchair. I have been granted the ability to write or type on most days, rather than having to give up my passion in totality. I am able to dance when music moves me. I still have the strength and endurance for yoga.

You helped me carry two beautiful children into this world, and more often than not, I can still scoop them up in my arms; there are no words to eloquently express the gratitude I feel for this. For now, I will simply say, “Thank you.”

I vow to keep perspective on these truths from this day forward, and when my humanness gets in the way of perfection, I vow to forgive myself, and carry on with peace in my heart.

I promise to surround you with other bodies that will raise your vibration. I will protect you from toxic relationships and I will hold on tight to this partner of ours, for he gives you the support, the embraces, the kisses, and the comfort that you deserve.

I will laugh at every possible moment, from the depths of my belly, until joy radiates from my skin and tears stream down my cheeks.

I will close my eyes from time to time and smile, for no particular reason at all.

On days when you are failing, I will not speak to you in anger. I may cry when I’m at my weakest, but I will not blame you anymore. I will listen to your cues, and accept when I need to slow down and rest.

From this moment on, I will hold in my heart that you are doing your best for me, and I will not expect more. From this moment on, we are a team and I will repay your best with my best; and we will be brave together.

With deepest gratitude,

Sara

~

Taken from the Elephant Journal.

I love the Elephant Journal, so so so much. If I were a better writer I would submit something…maybe some day. For now I just want to sit and appreciate how beautiful this letter is; it puts in to words exactly how I want to look at my body. I confess most days I do not think this way, especially lately, but it’s something I want to work on. Because Sara is right, my body is doing the best it can for me…and even though I feel like my body and I are both losing the fight right now, and even though that makes me really frustrated and angry, it’s not anyone’s fault. . It’s not my body’s fault, and it’s not my fault.

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X-ray vision?

Sometimes I wish we all had x-ray vision, not for looking through people’s clothes you sicko, but for looking through people’s hearts and souls. Of course we all have things in there that we don’t really want everyone and their mother seeing…but really, just THINK about it. No more lying/deceiving, because we’d all know the truth anyway! No more cheating, because I wouldn’t need to smell her perfume to know where he’s been. And best of all (I think), no more invisibility. No more wondering if I’m fooling people with my fake “everything is ok” face…no more needing the face. No more wondering if people believe me that I’m really, very sick…because they would know that I am. 

I didn’t realize until recently exactly how invisible I was feeling. My pain is, by definition, invisible. My feelings are, by nature, invisible. But no one should be, as a person, invisible. And that is exactly how I have felt for a really long time. 

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Sleeeeeeeep….

I sleep, it’s what I DO; and I do a lot of it. But every so often I have a night that just sucks; I can’t fall asleep, once I am asleep I don’t get my usually crappy quality sleep, and I wake up feeling even worse than normal. I recently discovered an iphone app that piqued my curiosity, it claims to track how well you are sleeping, and has an alarm function to wake you when you are sleeping lightly, in order to avoid rousing you from a deep sleep which causes most people to wake up groggy and feel “off” for the rest of the day. I was skeptical that this app could do what it claims, so I’ve been testing it out for the last 7 nights now…and I find the data I got pretty interesting.

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This was the first night I used the app. It shows a fairly regular pattern of transitions from light sleep to deep sleep and back again. On this morning I woke feeling my normal amount of rested (which is not very rested). As you can see the alarm did go off at 9:26am, even though I had it set for 9:45am, that is because it determined that 9:26am was when I was sleeping light and would wake up easily. As you can also see that didn’t work out as planned, since I pushed snooze 5 times and didn’t get up until 9:47am…but that’s ok, I have learned after many years of waking up feeling awful that I need to plan a cushion of time into my mornings to allow for snoozing, or laying in bed waiting for pain pills to kick in before I get up, or taking longer than anticipated to get dressed due to pain, etc. I did not download the app for the alarm function, I downloaded it because I wanted to see what it said about how I am sleeping.

 

 

 

 

 

 

 

 

 

 

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This was last night. You can see the much higher percentage of time spent in light sleep, as well as waking up twice during the night. I do not remember waking up, and can only assume that the app was detecting lots of excess movement and interpreting that as me being awake (although I could have woken up and just not remember it; my hubby says that I occasionally sit straight up in bed, open my eyes, look around, and then lay back down…I have NO memories of doing this lol. I used to have night terrors as a child, and have a theory that this sitting up in bed is a very minor, adult version). This morning I woke up feeling like I ran a marathon in my sleep, and I might have since all of my pillows and blankets were on the floor! This may also have contributed to the light sleeping and the feeling awful when I woke up, because it is an extremely cold morning here with the temperature when I woke up being 43 at 10am! My pain levels are through the roof, and I am writing this as I lay in bed and wait for my pain medication to kick in. I am exhausted and feel like I just need to go right back to sleep. 

So it appears that the app may in fact be doing an acceptable job of tracking my sleep…I will continue to collect data and compare it to how I feel in the mornings. 

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Holy acupuncture!

I’ve been doing a lot of research lately, and I mean A LOT, on other things besides fibromyalgia that could be causing all of my symptoms (more on that soon I think…). So this led to me starting a quest to collect my medical records from every doctor I’ve ever been to…that’s a LOT of records! Yesterday I stopped by the naturopathic doctor’s office where I used to go during the summer after my senior year in high school to pick up the records from them. Back then I was having chiropractic manipulations and acupuncture performed in an attempt to alleviate some of my pain and fatigue, since I was still a minor and unable to see a rheumatologist. While I was there I randomly decided to ask if they take my insurance, and they do! AND they had free time to get me in to see the doctor right away! So I spent about 3 hours total in the office, laying on 2 different massage tables (one hydromassage and one with a thing that rolled up and down my back), having some testing done (which I’ll explain here once they explain it all to me!), having a chiropractic adjustment done, as well as spending some time relaxing with about 9 acupuncture needles placed in my lower back and right ear and an infrared heat lamp aimed at my lower back.

By the time I left the office it was incredible how good I felt!! I think I can honestly say that was the closest to my “normal” self I have been in close to a year!! And it lasted pretty much the whole rest of the day! It’s really sad how I had literally forgotten how it feels to not be miserable.

Needless to say I’m going to keep going! It’s only a $10 copay, and hopefully it will keep helping!  

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