The minutes pass like hours.

Nightshade by Marc

Well my dear readers, today has been one long miserable day to say the least. I woke up at around 5:30 am or so with my signature headache and the overwhelming urge to vomit. I hadn’t hardly had anything to eat so there wasn’t really anything to vomit up but the waves of intense nausea and stomach spasms kept coming. This cycled on about 3 times, at once per hour and every time was worse than the last. Please make it stop; please don’t make me dislocate anything are the thoughts that kept running through my mind.

I never thought I’d miss my old headaches. But, to have a headache that’s so severe in it’s throbbing and overall pain that just turning my neck makes me cry out, then having to run to the bathroom and then traumatize my body with the vomiting that follows, is just about as miserable as it gets for me. And to make it even worse, I can’t keep anything down so any type of pain relieving medication is off of the table.

I was only finally able to take my medication a bit ago and every inch of my body was screaming at me for it. My headaches never used to come with nausea at all and now all of a sudden every severe headache I get the nausea isn’t far behind. I’ve thrown up more in the past 2 years than I ever had in my entire life.

I’m so relieved that it’s eased off now. The nausea has lifted and the headache is more background noise than anything. I always feel so exhausted and kind of hung over after these episodes, so I’ll probably be in bed early tonight.

Thank you for listening and much love.

xx

-Katie

Hello November and Pain Awareness Week!

November snow by Anil Reddy

Hi everyone! Sorry it took me a week to post! Today is the start of “National Pain Awareness Week” here in Canada. I’m hoping to feature some guest posts from other individuals who live with chronic pain in order to raise awareness (anyone who’s interested can email me katie.robertson@live.ca). I’m also going to be re-posting from my Canadian Pain Summit trip and speech and talking a bit about how things have started to changed here following the summit.

I finished the poster I’ve been working on for the ILC Foundation tonight. As far as I know they plan on publishing it to coincide with awareness week. I’ll be putting it up on the blog as soon as I can. I’ve got a few drawings here to finish up and then I’m hoping to blog a drawing challenge that I found. It sounds like loads of fun and I’m really looking forward to it.

As for how life is, this past week was pretty unpleasant. I’ve spent most of it with a horrible headache and the accompanying nausea. Most of the time all I feel like doing is laying down but my back disagrees with that notion. A few days ago one (or more) of my ribs dislocated, much higher up than usual. I could still bend where as when the lower ones are out I can’t. But, this one being so high up made it unbelievable painful to breathe. It almost ended with a trip to the hospital but that usually doesn’t do much good so I just tried my best not to breathe too hard or move the wrong way. It seemed to make something in my shoulder and collarbone go out a bit as well. Or maybe everything was just spasming because of the rib. Lucky for me the dislocation only lasted about 12 hours this time instead of the couple of weeks it took to go back in last time. I’m really grateful for that. 

I had an ultrasound last week on my gallbladder, kidneys, liver, pancreas, appendix, bladder, stomach intestines and aorta. i’m not sure what the majority of it was ordered for apart from to check on my gallbladder polyp but I’m glad my doctor’s checking on things. I haven’t heard back from them so I’m hoping that’s a sign that everything looked good. The ultrasound itself went alright aside from my ribs not taking it too well and the technician telling me that “pain is good because it lets you know you’re alive” when we were discussing my chronic pain. I’m going to venture to guess that whoever first uttered that phrase hadn’t experienced a whole lot of suffering in their life. Oh the things I wish I’d said in response!

Anyways, happy November to you all! Hope your October was enjoyable! xx

Yay, it’s a new day!

What a difficult last few days!! My right hip has been out of place to some extent for a long time (my hips seem be out a little more often than not), I used to be able to pop it back in regularly but it was getting harder and harder until I couldn’t do it at all. Now it’s been causing me quite a lot of pain, mostly when I get up from sitting, which makes it difficult and painful to walk. So, by yesterday it was bad enough that I had to use a crutch on and off throughout. I’m hoping to get a cane next time I’m out. I need to get into the doctor so we can order an X-ray and make sure that’s what’s really going on. I’ve always had hip problems not only because of my tissue disorder but because my hips are pretty severely rotated and they’ve always been incredibly loose.

I’ve been getting some pretty nasty bouts of nausea starting Saturday night. I took some gravol when it started and went to bed. It seemed fine for most of Sunday aside from a few waves of it, but by 5:00pm it was getting really bad again and with the heat in the house (31°c) and my splitting headache I was too sick to stay awake anymore. By 8:30pm I started throwing up (despite only eating a banana all day!) and for the next few hours even the slightest movement would make me vomit, which in turn would spin my throbbing headache out of control – which I couldn’t take meds for because of my stomach. Finally I fell asleep around 4 am or so. 

I started waking up around 7:30, exhausted, because my back, hips, knees and feet were really hurting (nerves I think, from my back), and by 9ish it was bad enough that I had to get up. And holy heat wave! Mom and I had to spend the latter part of today at my grandparent’s in their basement. Our little trailer was at 33°c by the time we left and rising. When you already feel yucky that much heat is no friend. I’ve been taking ginger pills every four hours to hopefully help keep any more nausea at bay –  so far so good. I’ve been too afraid to eat much of anything but I’ve been able to catch up on my water, which I couldn’t do last night.

I’m so glad this day is over! I think I’ll sleep well tonight. Hopefully tomorrow isn’t so hot!! I seem to be very intolerant to heat this year (not that it’s ever really quite this hot here). I’m hoping tomorrow I’ll be able to catch up on some of my blog reading and posts. I miss my blogger friends!

Ehlers-Danlos Awareness Month – Fact #6-9!

Sorry for the lack of EDS facts! I’ve had a strange few days topped off with a horrible headache and the nausea that comes with it. I went to lay down at about 11:30 am yesterday after only being up for a few hours and ended up not being able to get up until 6:00 am this morning! I’ve been feeling pretty awful, even for me. I wish I could say I feel rested after all that sleep but I definitely don’t!

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Fact #6: EDS can also be associated with rare and/or serious conditions such as tethered cord, cervical cranial instability, cranial settling, dural ectasia and chiari malformation. It’s important to be evaluated for these conditions if you have EDS and begin experiencing unexplained or new neurological symptoms. It’s also important to make sure the radiologist reading your imaging results is aware of your disorder and these generally rare manifestations, so that they don’t misinterpret them or miss them altogether.

Fact #7: The many potential ocular manifestations of EDS can include: high myopia, cataracts, lens subluxation, glaucoma, retinal detachments, photophobia and macular degeneration.

Fact #8: Postural Orthostatic Tachycardia Syndrome is a common and potentially debilitating symptom of EDS caused by an abnormally large increase in heart rate upon moving from a sitting or laying position to a standing one. This is often accompanied by a fall in blood pressure and decrease in blood flow to the brain. Severe cases of POTS can potentially incapacitate those who suffer from it preventing them from attending school or work and/or leading a normal life.

Fact #9: Because of the unpredictable nature of connective tissue disorders like EDS, and the enormous array of possible symptoms they can cause, it’s recommended that individuals with positive or suspected diagnosis of them receive ongoing, long-term medical care – preferably by specialists knowledgeable of the unique and possible complications they may cause.

Another Tuesday night.

IMG 0135

My old buddy, always keeping me company when I’m down. Today consists of extreme back pain, a headache and cuddles…and hopefully some drawing/coloring.

Clenching my fists.

Yesterday was a good day. I slept decently, vacuumed, went to the store and went visiting, all of which I did happily and in a minimal degree of pain. I sang, I danced around and I smiled. I think that the last time I had a day like that I was in my early teens.

Today however, is the polar opposite. I am nearing my threshold for pain tolerance, edging closer and closer to the breaking point. I think that I have multiple subluxated ribs and can’t take a deep breath in or bend over. The pain that it’s causing is nearly jaw breaking and I’m finding no relief in anything that I try to ease it with. My spine is radiating searing pain down to the tips of my toes and my head is throbbing so badly that I can actually see my pulse in my eyes and hear my teeth knock together in tune with it. I don’t think that this is payment for yesterday – save for my back which is very likely worse because of the vacuuming. If it were though, I’d take it – as hard as that is to swallow in all of my current misery. I mean, when was the last time that I could pinpoint a specific date and say that was a good day. This rough day however, will eventually pass and fade into a background littered with similar days. Only this time I will have the memory of yesterday to tide me over.

I desperately need support right now but I’m extremely snappy and irritable so instead I’ve been isolating myself to keep from hurting anyone that I care about with my anger. It’s nobody’s fault and I know that. It’s just one of those day where you feel like a fizzy drink that’s been shaken up – you need to blow the lid off and let some of the pressure out. You think that taking out all of your pain on someone might make you feel better – but I know that it never does. For now I’m holed up in my room, gritting my teeth and clenching my fists, just waiting for some kind of relief to find me.

“And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter — they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long.” ― Sylvia Plath

Head full of doubt, road full of promise.

I’ve been drawing again lately, for the first time in a long time. I used to do it in some capacity every day, just as I would write poetry often. But, the neck and head position required by drawing would aggravate my headaches to a degree that I couldn’t take anymore. The same thing would happen with my rib pain from the sitting position. This has been another bitter blow that pain has dealt me. The list of hobbies and activities that don’t make the pain worse is dwindling down to nothing. But that’s just it; I can’t let the pain take away everything that makes me happy. And when I truly think about it, why should I? I’m in pain anyways, whatever I do. So, I might as well be doing the things that I love and finding some happiness in the process. And I’m not saying that I’m going to pick up all of my old hobbies – like basketball and volleyball. I know that doing those things aren’t an option – pain-wise and Marfan-wise.

Moderation is the most important factor that I’ve found in containing the pain to a bearable degree. I draw for about 20 minutes, take a break and then when my neck and ribs feel a bit better I pick it up again for another 20 minutes. This doesn’t fix the problem entirely but it helps. I try not to do it for more than an hour a day, sometimes though, I break that rule – and pay for it. It’s given my attitude a bit of an uplift. It’s silly but I feel like I’m taking something back from my condition, like I’m not letting it get the better of me for once. Looking at it solely that way, like I’ve somehow won this one battle, makes me feel a bit better about my current circumstances. 

I’ve been sleeping, a lot because of the beta blockers. And when I’m not sleeping I’m either trying to or wishing that I was. I’ve spent about 42 of the last 48 hours asleep. Impressive for an insomniac. I think my days of being up all night may be behind me – although, the beta blockers do list insomnia as a common side effect so I guess I’ll see. That’s not very nice; that they can make you super tired but also make it so you can’t sleep.

Now for a coincidence – my mom was just prescribed the exact same beta blocker (Propranolol) as me – only for headaches and not her heart. I was disappointed because my headaches haven’t gotten any better since starting it but I read something online that said it may take 4 to 6 weeks after getting to the appropriate dose (mine may not be high enough) before you notice a change in your headaches. I really hope that’s the reason, but not as much as I hope that it helps my mom’s headaches. It’s been 12 years now since the initial headache started. She had that one all day every day until a couple of years ago. She still gets it at least once a day but it has mellowed a bit.

During the first couple years of having the headache she was scared that she was going to drop dead at any moment – the pain was so severe that she was sure there was something very wrong. I was shocked to learn that no scans or tests had ever been done to make sure that there wasn’t. Her doctors had never thought it necessary, no one (medical professionals) did anything to help her. I’ve watched my mom suffer with this for a long time now. I’ve seen that look in her eyes that only someone in a lot of pain has, everyday for the past 12 years. I didn’t understand it when I was younger; why she stopped going out as much and being able to attend as many of my school events as she used to. I was 7 when this started, and how it feels to live in chronic pain is something most adults can’t even comprehend. I often thought it was something that I had done, like I was in trouble or that she was just being mean when she said no to things. Now regrettably I know how much harder those things were on her than me, especially if she knew that it was making me unhappy. I seriously hope that I kept that to myself and didn’t hurt her more with it.

Soon the chronic headaches turned into widespread chronic pain, and eventually she was diagnosed with fibromyalgia. A diagnosis that we still don’t know whether to believe is correct or was just handed to her by doctors too lazy to find the real answer. And I 100% believe that fibromyalgia is a real condition so don’t get me wrong on that. I just wonder if because it covers so many symptoms if they just stuck my mom with that diagnosis instead of putting in the effort to find another cause. Or if the original cause of the headaches remaining untreated did in fact morph into fibro and start causing the widespread pain – since we know that many cases of FM stem from acute injuries not being diagnosed and properly managed. Either way, she’s suffered and continues to. I would do anything to give her a body that doesn’t hurt, to let her live her life again instead of just surviving it.

If the Propranolol helps my mom’s headaches that would be the first step forward in her illness in 12 years. It wouldn’t fix everything but it would fix something

“There was a dream and one day I could see it.
Like a bird in a cage I broke in and demanded that somebody free it.
And there was a kid with a head full of doubt,
So I’ll scream ’til I die and the last of those bad thoughts are finally out.”
– Head Full of Doubt, Road Full of Promise by The Avett Brothers

100 Day Long Week

I clearly haven’t posted in a while. I have a decent excuse, I swear. The past week or so I’ve been sleeping (or attempting to) for about 20 hours a day. Some kind of a bug or something I think. It’s starting to slowly ease off now but I still feel exhausted all day long. The fatigue is accompanied by some very intense headaches (to add to my usual ones) and the feeling that my entire body, from head to toe is bruised. The lymph nodes in my neck on the right side are swollen but that’s nothing new. Actually, to be completely honest it feels like waking up with the worst hangover ever. Gravity feels a thousand times stronger than usual, my pillow feels like a magnet and my head the metal.

I had some blood work taken on Thursday to make sure it was nothing serious since my parents were going out of town for the weekend and I’d be home by myself. I got a call on Monday that my doctor wanted to see me, “nothing urgent” so I have an appointment for next Monday. It’s got me curious as to what she wants to see me about, maybe the blood test showed my iron’s low again or something like that. To be honest I’m hoping it is because then I’d know why I always feel so ill (not just the past week’s kind of ill).

My eye doctor gave me a stronger Pilocarpine drop to see if that would keep my pupil small for longer. This drop is 4% instead of 2%. I didn’t even know there was a stronger one until he prescribed it. I haven’t tried it yet, I’ve been waiting until my head hurts a little less, I don’t want to add the eye ache to it. I have an appointment with a connective tissue specialist next Wednesday. Through him we’ll see about booking an MRI of my spine. It’s been about 5 years since my last one.

A few weeks ago I sat down with my town’s local newspaper and did an interview about what my life’s been like since I was diagnosed and how critical raising awareness about these disorders is. The article was recently published and I’m really proud of how it turned out. I’m not sure where my copy of it is hiding right now but when I find it I’ll post some of it on here.

Melatonin and It’s Many Health Benefits

Melatonin is a hormone produced by a gland in the brain known as the pineal gland. Darkness triggers the production of the hormone where as light inhibits it. For those who aren’t producing enough naturally then melatonin is available as a pill similar to your average vitamin.

 For years I’ve been aware of the beneficial effects that taking melatonin to help you sleep can have. Though, it never worked on me years ago I just recently found out that you could up the dose much higher than the one I had originally received, and to my surprise I’ve found that sometimes it really does help me fall -and stay- asleep. I’ve found that when taking melatonin as a sleep aid it’s important to remember to stick to routine. I take the needed amount and then brush my teeth and go straight to bed. This seems to help initiate the effects so that they work properly.

What I didn’t know about melatonin was that it has many other surprising health benefits. For instance some studies have shown that melatonin is an effective preventative treatment for both migraine and cluster headaches. For those in this particular study 3 mg of melatonin was given each night before bed for a period of three months. At least two-thirds of the patients in this study saw a reduction in the severity and frequency of their headaches by at least 50%. If you suffer from migraines then you know that this change is a significant amount.

This hormone has also been found to help fight multiple cancers including breast and liver cancers as well as small-cell lung cancer. Melatonin has also been used in treating mood disorders (with positive results) as well as gallbladder stones (it helps reduce the amount of cholesterol within the gall bladder), Alzheimer’s, delirium (in elderly patients) and protection against radiation among other things.

So, it would seem that melatonin could make a huge difference in many lives and the fact that it’s a natural substance makes it all the better.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.}

“Health is the first muse, and sleep is the condition to produce it.” -Ralph Waldo Emerson