I thought it would be fitting to have a refresh of the blog and a refresher post featuring a new summary of my 10 year journey. Because lets face it I'm not going to a 10 year reunion with the grad class I never met. So let's see what have I done with my 10 years? I went into my grade 12 year full of life and energy and spunk! Determined to go out into the world and change it! I shall start by stating this is not going to be a touching tale of heroics or about how I chose the road less traveled, and that has made all the difference, for I did not. There was no choice, this journey was thrusted upon me. And now looking back it's been a wild ride, so ladies and gentlemen strap on your seat belts this is going to be a bumpy ride.
It Started with a flu
For me, 2017 will mark my 10 year milestone of catching a nasty stomach bug, that forever changed the course of history as we know it, or just my life. Do those 10 year markers come with survivors trophy's, 10 year members chips, or do they hand out complimentary barf bags? Are they celebrated with parties or do we not mention those life events. Its funny how something like a dumb tiny virus can come into our bodies screw with our genetic codes and then go off like a ninja merrily into the night never be mentioned again. Its so embarrassing to have your life long dreams taken out by a bug. It makes you feel so out of control. As in stay close to a washroom, out of your control... Unlike car accidents, people never shut up about them. When exchanging stories in Dr's offices sometimes, I try not to talk about causes. Becauses there's always that guy, that's like, "Dude, this tank came from out of nowhere, took me out, flipped my car in the air 4 times!"and then they just look at you. They give you that, what's up with you head nod, and you know you have two options: the long medical word list of diagnoses they won't know, or basically you break it down to the lame disease by flu bug. Tell me what's the cool answer for a twenty-something?
So yes, you heard me right this crazy journey started with a stomach flu in my grade 12 year a long time a ago, in a land... I'd like to say was far, far away, but lets face it I got too sick to travel. I finished grade 12 from bed too sick to attend classes. Yay, grad 2008 the year I was publicly shunned from society for getting leprosy, no wait, that's no longer a thing. It was just the flu. Teenagers, are so dramatic. It's fair to say getting chronically ill can take it's toll on your social life and that at the time felt like a very big loss. It was around the same time that my friend group was getting deeper into darker things so in a way there was good that came of the exile. It sure was a hard adjustment though to go from having a solid group of friends to having one or two that talked only now and then, it all happened in such a short amount of time. I think the most shocking part, was that I thought I had those go through everything life long friends, these two people that got me, and in the course of a year they were just gone without a trace. We shared similar goals, the same faith, and we were like sisters. Sometimes I still see reminders and it aches in old places. Those were unexpected and big losses at the time. I remember leaving the private school I grew up in my grad year, so we could all graduate at the same high school. Ironically had I never done that I never would have met my husband, so it did eventually work out. It was just so shocking to suddenly be stuck in bed and to have no one come to see you, suddenly barely hearing from your closest friends ever again. Then a few years later planning your wedding (YAY Wedding!) and very few friends to even invite besides family. Its a bewildering feeling. The odd thing is to this day, all I am certain about is that I got really sick really fast and I became very isolated and lonely very fast. All that was clear was that no one understood, or believed me. It felt like heading into a dark tunnel and not knowing where I was going, or who I would be when I came out the other side. Honestly, I was most scared of how I was changing, how my body was betraying me it could not digest food, let alone keep it down. I was becoming less and less capable of functioning; less and less relatable.
Then Came the Thyroid
At 18 the illness started and by 19 the diagnoses rolled in slowly but surely symptoms worsened, the nervous system began its slow decline, and Dr scratched their heads at the oddity in the room. Then I went on to have a tiny piece of the larger puzzle diagnosed as Hashimoto's Disease* after months and months of tests proved to the Thyroid specialist who I waited 1/2 a year to get into, what I had tried to tell him when we met, that this is not in my head. In layman's terms I am neither Hyperthyroid nor Hypothyroid, I get to swing between the two. And no, that does not mean the best of both, that means I fluctuate between complicated symptoms if not medicated = I get really sick. The Thyroid Specialist was a pretty strange guy that reminded me of the dad from the old tv show full house, who then gave me a lecture, on how I'm a shiny new car with a ford factory in my throat and yad-yad-yad, some how there are drunk guys operating machinery, and pumping out broken cars from my factory… couldn’t help but wonder what was the moral? Was he also drunk? Did he get that I was a teenage girl? (Side note: I would just like to state its time for Dr's to stop using cars to describe the body to girls. Try asking what they're interested in, or if they understand cars. Every time they lose me at cars.) After this my family Dr informed me that my thyroid had bumps, called nodules on it that are just a millimetre away from cancerous sizes so every few years they need to be checked. No worries, right? So they put me on Synthroid with the rest of the older ladies that usually get thyroid disorders and call it a day. I think they've followed up with an ultrasound and checked on my thyroid a few times in the last 8 years. That, folks, was my beginning. I will never know what my 'prime' looked like, because I never had one but this was just the start of my health escapades or apocalyptic tales.
Seeing All of the Dr.'s and Undergoing All of the Tests
Then, I still had the anemia, chronic fatigue, muscle pain, nerve pain, couldn't keep food down, IBS, etc. And had just started my first year of College. When I went back to my family Dr. she told me it was all in my head and sent me for a psychiatric consult. Ya, she was a really nice supportive lady. Don't you want her in your corner? In spite of her, I got a new family Dr. obviously, and went on to see a gastroenterologist, rheumatologist, and a few other specialists, who put me through a lot of uncomfortable unflattering procedures (both scopes) to make sure I didn't have any weird diseases. There the lupus tests came back slightly off which was odd but inconclusive. I dabbled with a naturopath that told me, I'd have to take double the amount of time I'd been sick doing his methods to get better which at the time put me at about two years. We spent $ every visit on products which were disgusting and didn't help and yes mom, I followed all the instructions. After everything we gladly paid the naturopathic Dr. to test for Lyme disease, but due to Canadian Health red tape when it came to our lyme tests he had to to take my blood and send it away to the states for more thorough lyme and parasite tests. Alas, after everything they came back equivocal.
It Wasn't All In My Head
After all the kings horses and all the kings men could not put Elysia back together again. I eventually got into the a Pain Specialist after the very long wait of 2 years. Which turns out was worth it, because finally here I was treated like it was not all in my head. Here, someone got it, that my pain was as brutal and outrageously horrible as I said it was. The neuropathic pain that feels like electric stabbing shooting nerve pains that I get all over all the time are not in my head, I'm not crazy! Hallelujah! As well as to finally be diagnosed with fibromyalgia a pain disorder that explains the majority of my symptoms. Before, seeing him I had been told many many times that I would just have to learn to live with this amount of pain. Over the following years the fibromyalgia* has been treated with many different medications, sometimes I joke that it's being treated with all of them. But seriously, taking drugs sucks, they make you suddenly fat, make you retain water, make you sleepy, forgetful, dizzy, foggy, nauseous, change your taste buds, cause numbness, allergic reactions, and if that’s not bad enough… they make it so that if you weren't confused enough as to what your symptoms were before, now you are.
One Organ Down, One to Go
In 2012 I lost my gallbladder* after it had filled with stones, and that wasn't cool. The surgeon that took it out said it was pretty close, to before it would burst. But then, I was sent home too soon from the hospital and it got infected. I ended up getting really sick and having to go back in screaming in agony. To top it off, the Dr that treated my infection, didn't understand the levels of chronic pain from conditions and got a psychiatric consult for me. Which was just purely demeaning. The biggest problem of it all, was that I'm so used to living in pain, that I didn't notice the gallbladder. It hurt, but it throbbed like my guts do like when I eat spicy food, and the IBS reacts badly for days after, maybe a little worse. I couldn't help thinking if I had gone in sooner a lot could have been avoided. Living with this kind of constant pain it's so hard to know. The constant pain it seems is ever present and never dissipates. The pain in my lower abdomen hurt so bad that I have undergone investigative surgery for endometriosis* because the pain is so extreme in so many different areas of my body that it's hard to pin point the cause. After under going the surgery that had a high 80-90% success rate of finding it the endometriosis wasn't found, but they did removed cysts and fibrous tissue. The ovarian cysts are re-occurring, meaning I get them from time to time and they burst and that hurts, it's just life.
What's helped me personally, with all the chronic pain I deal with is pain medications from the tricyclic family because I have a lot of neuropathic pains*. Up until I got pregnant my pain was moderately managed about 5-7/10 avg. pain (1 being none ) Aside from these random head pain that I'd get that got gradually worse. They started out in my temple, an electric stab randomly. unlike the neuropathic ones I usually get throughout my body. This made me dizzy, blurry, blinding pain. It lasted 5 seconds and was the worst 5 seconds I had ever felt in my life. My pain specialist sent me to a neurologist who was at the time to disorganized; By the time I waited months and months to see him his secretary had lost my MRI so that when I went in and he saw he said he couldn't diagnose it. Thus, it waited and waited and my pain specialist diagnosed it as Trigeminal Neuralgia as it progressively got bad enough. But, by the time it was diagnosed and we could treat it I found out I was pregnant with our first baby, (YAY) but that meant then that I could no longer be treated with these medications and so I was started on a whole different merry-go-round more on that over on the Motherhood Post.
Going back to the Trigeminal Neuralgia after it progressed into lasting 10 seconds and coming once a month or two months and then 3x a month the specialist diagnosed it as Trigeminal Neuralgia. (All the Yellow area's hurt) Here's a quick Visual aid:
Let me try and break it down for you really quick:
Now it lasts for 15 - hours minutes intervals stops for 5-10 minutes then starts again, spreads all through the branches of the cranial nerves. I feel excruciating electrical, burning pain, deep in my left ear, sometimes I try putting my finger in my ear but doesn't help. The throbbing is in the ear canal somewhere that I can't reach, then it spreads feeling hot up over my eye brow, burning searing pain under my eyelid, it twitches sometimes and into my nose almost. Down from the ear along my cheekbone on top of my jaw bone and teeth into my top lip. And, again searing burning electrical pain under the bottom jaw bone, teeth, bottom lip, and then sometime faintly from ear to brainstem in the very back of my neck. For me the longest it's lasted so far was April* 2017 it was a bad month. That's been my worst month to date. Which is when I had a life threatening reaction to the best medication chosen to treat Trigeminal Neuralgia. I developed a red rash over my face, chest, and arms. I woke very tired but thought it was just cause I had been up getting two babies the night before. The only odd thing was I couldn’t motivate myself to keep from sleeping on the carpet, so I set up the kids, kids show on check, toy mat with baby check, everyone's fed and changed check. It was only till around lunch when I had a fever of 40.1 and my son brought me the corn I forgot I made us on the counter that I realize somethings wrong with me and called my husband. When I got to the hospital I felt like I lost consciousness in the intake room I think it's literally the fastest I've ever been in from the front door to the intake to the dr, seeing me. But now I know that only cause they thought that the rash could have been measles, after they realized it wasn't I was put on a gurney in the hallway, till that was taken away and I was given a chair to sleep in and then was forgotten about till morning while I waited for an internal specialist to see me. He didn’t come till 3 pm and said maybe 5 words "go see your pain specialist." Most of the night was spent holding boiling hot water in a McDonalds cup up against my head just to take the edge off the pain. My mom had retrieved from McDonald's for me when we realized the hospital only has warm blankets or cold packs, no heat packs. At times the pain gets so bad I wonder/hope I'll lose consciousness. Sometimes I contemplate how my pain sensors work if I were to stab myself during a bad flare, would the pain of the wound stop the head pain for a minute or two? Obviously I am not insane, I would never act on this for it irrational you'd be left with an open wound and the pain would return and you would be far worse off. It's just something someone in pain thinks up. This is the kind of pain that drives one mad. When I'm home and it flares it hurts so bad that all I can handle eating is a soft food diet of soups, or mushy foods, as I've read is common on support group walls.
Now, since having such a really bad reaction to the best medication for Trigeminal Neuralgia my Pain Specialist has asked me to be apart of a study called Transcranial Direct Stimulation (tDCS). Yes folks, that's right all it took was 10 years to bring me around to the idea of letting someone electrocute my brain. That's not weird. Had you told me 10 years ago that I would be jumping at the chance I would have laughed and laughed. Now I'm literally jumping at the chance begging my benefits provider to please let me try it. Of course it's been approved by Health Canada and they're not electrocuting anyone, it's more sciency and stuff than that I hope. So, get excited cause soon there will be new updates and research on tDCS coming to a blog near you!
The Fast Version:
Finished gr.12 in bed. was diagnosed with Hashimoto's Thyroiditis, neuropathic pain, and Fibromyalgia. Got Married! Lost gallbladder. Moved a few times. Diagnosed with Trigeminal Neuralgia. Got pregnant! Lost appendix. Graduated with a BA! Got Pre-eclampsia/HELLPS, delivered early! Had a Boy! Moved again to a lovely neighbourhood. Water broke month early! Had a little girl! Had a life threatening reaction to a drug prescribed for the Trigeminal Neuralgia.
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