A drawing in progress: An ever slowing process.

This is one of the drawings that I’ve been slowly working on as of late. I started it a few years ago, but my fleeting interests and endless new inspirations for artwork meant that it got put aside and forgotten about for a while. I apologize for the low quality and blur: the picture was taken on a very old phone.

The reference that I used for this drawing is a stunning photograph by the incredible Sandra Jolly at www.sandrajolly.com. Please do check out her work!
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As I’ve mentioned before on here, I love drawing. It has been—and will continue to be—one of the most productive and meaningful ways that I’ve had of coping with my disorder and the adversities that come with it.

Frustratingly, as I’ve gotten sicker it has gradually become a very slow and difficult process as I can no longer do it for very long, or very often. Previously this was primarily due to my chronic pain, but now my eyes—and the effect their various conditions have on my vision—have increasingly become another hindrance.

I worry for the day that I lose this outlet altogether: the day when my vision may be so bad that I can no longer see well enough to draw at all, or when my fingers have become so unstable that they can no longer hold a pencil. Writing has always been my other major coping aid, and these things have equally been impacting my ability to do that as well.

But, despite the frustration of such slow bursts of productivity with my art and writing, I can still do both sometimes, and for that I’m so incredibly grateful.

– Katie

Getting Creative in Order to Minimize Pain: An Orchard Corset Review

This is my review of the corset that I recently got from Orchard Corset, as well as my thoughts and experience in dealing with the company itself.

Disclaimer: A month or two ago, I contacted Orchard Corset explaining in detail my interest in trying one of their corsets (for the reasons that I write about below), and they very kindly agreed to provide me with one (free of charge), in exchange for my feedback on this particular issues. They also agreed to allow me to document their product and the results—honestly, whether good or bad—for others in similar situations.

So, I want to thank them, as it’s not often that a company is interested in the way in which their product may benefit, or be utilized by, someone with a rare disorder, and I really appreciate the genuine interest they showed. I also appreciate them agreeing to allow me to write an honest review of my experience with it and them on this site.

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As one might imagine, adequately dealing with a disorder that potentially impacts literally every inch of the body in one way or another, can become astonishingly expensive. Proper splinting or bracing with connective tissue disorders can go a long way to helping reinforce faulty tissue and prevent further joint damage. The more something subluxates or dislocates, the more unstable the tissue holding the joint in place becomes, and the more likely it will be to do so in the future. Thus, prevention of this stretching of the tissues—the earlier the better—can be key to keeping the joints stable, and minimizing pain.

Medical braces are extremely expensive however, and depending on where you live, they’re often not included in medical insurance plans. Finger ring splints alone can cost $40.00 per finger, with longer lasting materials potentially increasing the price dramatically from there. Like many other people, I’m unable to afford properly fitted medical braces, despite their potential to help prevent—or at least decrease—endless pain and problems down the line. In particular, I could likely see the most immediate and life-improving difference from this with some of my spine and rib issues. Specifically, a brace like this could help compress and reinforce my very easily dislocated ribs (maybe not the very top ones, but the lower ones that cause the most pain and are the most unstable). It could also help support and straighten my spine, which already has numerous painful, degenerative problems—the worst of which are in the lumbar region. It could also help support my spine enough to largely correct my posture, which is usually very hard to do on my own.

With all of that in mind, I’ve spent the past few years looking at corsets as an alternative, hoping that they might act as a more reasonably priced substitute. Unfortunately, because I live in such a small town I’ve had no choice but to look online, and the first few that I tried were either too cheap and very poorly made or just ill-fitting. Eventually the numerous disappointments started to add up, as did the combined price of them, to the point that I wasn’t able to keep trying.

Recently though, I decided to look again, just for the hell of it. The first company that came up was the aforementioned Orchard Corset. From there, I started to really look into them—so that I wouldn’t end up making a mistake again—and everything that I found suggested that this would be the time that everything worked out. When you’re looking for something online, you’re forced to rely entirely on the information that the company or store that you’re dealing with has provided. On top of that, there are a lot of things that can factor into a corset in particular; finding the right one and using it properly isn’t as simple as looking for clothes. It can feel overwhelming at first for a newcomer like me: trying to find the right type and style, taking your measurements properly, making sure you know how to properly look after it, or even put it on—it’s a lot to take in.

I was immediately impressed when I saw that Orchard Corset has a blog with numerous different categories, where they’ve already answered every question you might ever need or want to ask. In addition, for those who do better with visual or verbal direction, they also have a YouTube channel where they’re on episode 89 of corset Q&A, demonstrating everything from how to accurately get your measurements depending on your unique body type, to whether it’s okay to sleep in your corset (and 87 other things!). They also keep a very open dialogue with their customers (a newer experience for me) and seem very dedicated to what they’re doing, which instills a lot of confidence for someone who’s in relatively uncharted waters as far as personal experience with the subject goes.

Having said all of that, here’s my personal—and honest—experience with the corset itself. To start with, they helped me find the corset that seemed the best suited for the purpose that I wanted it for: the Steel-Boned Longline Underbust Satin Corset w/ Hip Ties (CS-426)—(pictured above). I’ve spent the last month trying it out and getting used to it, which has been a lot less difficult than I was imagining it would be. Aside from the very first day (where it felt, understandably, a bit strange and restricting), I’ve found that I can quite easily wear it for hours at a time (most of the time, pain allowing), which surprised me given the severity of my pain issues. It seems to be made very well and does it’s job perfectly. The material it’s made from has also been easy to wear and hasn’t caused my skin any discomfort thus far, despite how tightly it’s pressed against it, though I do prefer to wear it over a thin shirt in any case. 

Overall I’ve been really happy with the results so far. Obviously my underlying pain issues are still going to be there, but it seems to both compress and help stabilize my lower ribs without being painful, as well as adjusting the alignment of my spine to give it a bit of a break when needed. I’m able to get it on by myself with relative ease which was something that I was initially concerned about. Their recommendation that I try a corset with hip ties has also proven to be an added plus, as it’s allowed for that extra little bit of adjustment. 

In conclusion, I can say definitively—and with ease—that I would recommend anyone else dealing with similar issues, who’s unable to afford custom medical braces, try one of these corsets. I would also happily recommend doing so through Orchard Corset specifically, as they’re by far the best corset company I’ve dealt with in regards to customer service, expertise and the quality of their corsets themselves. I’m really happy that this is an option that’s available in cases like mine and that I was finally able to find one that actually made a positive difference.

Eye and heart updates (again).

With everything that has been going on with my optic discs and brain lately, I never took the opportunity to write about the outcome of my cardiologist and ophthalmologist appointments from last March.

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My cardiologist appointment didn’t go as well as we’d hoped; my aorta had grown a bit since my last visit, which is never the greatest thing to hear, but it was also still quite stable overall. To get a better idea of how quickly it may or may not be progressing—and to maybe start me on treatment with Losartan if necessary—the cardiologist wanted to see me again in 6 months for an MRI. And, the MRI results showed that in those 6 months my aorta hadn’t grown any further, so for the time being it’s still safe to leave it be. I’m due for my next checkup in about 2 months, so we’ll see how things are looking now. I’m quite relieved at the results, and as far as I know my aorta is doing pretty well for someone my age with MFS, so, no complaints there.

As I’ve mentioned before on here (in “It’s hard to go through it again.” and “We always carry on, and sometimes it gets easier.“), the lens in my right eye suddenly shifted early one morning as I was getting out of bed. This was the third time that I’d experienced something like this with my lenses, so I was pretty certain I knew what was going on. It was somewhat devastating at the time because both times this had happened before, I would end up needing surgery soon after, and my vision would never be the same. But, thankfully it was (and is!) still hanging on because of some factors we weren’t aware of.

When we got to my ophthalmologist in Vancouver he told us that my lens was indeed holding on by one suture instead of two, which was why it had shifted and was now relatively (but not completely) loose. What we didn’t know was that during my last lens reattachment surgery, only one suture had come loose, so he only had to replace the one. We had always assumed both had been replaced. So now, the new suture is still stable and hanging on, but the original suture from my lens implant surgery—13 years ago—has finally let go. This can help account for why this lone suture has managed to hang on two years longer than last time—it’s relatively new and strong.

The trouble is, with only one suture holding all of that weight—in combination with the weak tissue from my disorder, trying to support it—we were told that it’s not a matter of if it fully dislocates again, but when. Sometimes it’s hard to sit here waiting for the other shoe to drop, not knowing when we’ll have to rush back to Van for yet another eye surgery and all of the difficulties that entails. But, I was already expecting another eye surgery, and having these extra years in between has been a gift, so the news wasn’t too bad.

My ophthalmologist was (and is) a bit concerned about some of the complications that a loose lens can cause regarding inflammation, hemorrhages and retinal swelling, so,— as long as the lens is hanging on—we’ll have to go back to Van every 6 months to check on all of those things. On a positive note, the lens in my right eye has had both of it’s sutures replaced, so it should be much more stable and less likely to subluxate like this one did, which is an incredible relief.

So, those are my—as per usual—long overdue eye and heart updates. I can’t believe it’s been nearly two years since everything with my lens kicked off. I’m so surprised and grateful that it’s still holding on.

Thanks for reading!
– Katie

Struggling with POTS

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One of the conditions that I’ve been dealing with—that I don’t often talk about—is known as Postural Orthostatic Tachycardia Syndrome, and it frequently co-occurs with the type of connective tissue disorder that I have. What this “syndrome” means is that, though I usually have a healthy resting pulse, when I stand it increases, often dramatically so. The effects that this can have and the list of symptoms that it causes seems near endless—and while my POTS isn’t as debilitating as it is for others, it does make an already difficult disorder sometimes seem an even more monumental task to cope with.

As an example, here is an incomplete overview from Wikipedia on just some of the most common symptoms:
• palpitations
• light-headedness
• chest discomfort
• shortness of breath
• weakness or “heaviness” in the lower legs
• blurred vision
• headache
• decreased concentration
• mental clouding
• extreme fatigue
• nausea
• near-syncope
• difficulty sleeping
• fluctuations in weight, memory
• pallor, or sweating

I experience every single one of those effects—most of them on a daily, continuous basis. And, this is despite the fact that I’m on a high dose of another difficult medication to control it. The medication itself also causes it’s own problems. While it does lessen the amount that my heart rate rises upon standing, it also causes my already low-normal blood pressure to fall quickly—and dramatically—along with it. This, ironically, also causes many of the same symptoms I’m on the medication to treat in the first place. Despite this, the medication seems necessary for the time being because, while it doesn’t prevent a large increase in my heart rate entirely, it does keep it from going as high as it often did without—and prolonged tachycardia (of any kind) can be hard on the heart, particularly with my disorder.

POTS is also a difficult disorder to navigate, as symptoms may be exacerbated with things like: “prolonged sitting, prolonged standing, alcohol, heat, exercise, or eating a large meal“. I seem to have to tip toe around it in order to help keep it controlled, but frustratingly, the path that I need to take to do so often conflicts with the things I’m supposed to do to minimize the effects of some of my other health issues. For instance, nearly every recommendation for helping someone with POTS (like increased salt and fluid intake), is the opposite of what I’m supposed to do to help stabilize my intracranial pressure.

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This was my pulse and blood pressure while sitting down.

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And this was my pulse and blood pressure shortly after, while standing up. My heart rate increased greatly, while my blood pressure fell just as much.

This can be a frightening thing to live with—the possibility of it’s effects worsening, hanging always over your head. That’s something that can be hard to ignore when you’re dealing with such prominent (and at times all-consuming) symptoms. I know that on the whole I’m lucky. I can still walk around normally without a wheelchair and haven’t begun to lose consciousness whenever I stand. That’s something that I absolutely know to appreciate with this syndrome. But—at the same time—dealing with all of the other ways it’s effecting my quality of life on top of a debilitating disorder can be difficult, and exhausting.

The hospital stay: part 2

Continued from yesterday.

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The spinal fluid leak and post-dural puncture headache.

During the lumbar puncture they were instructed to get fluid for diagnostic testing, but also since they were so sure my problems were caused by increased intracranial pressure, to both measure said pressure to prove that theory, and to drain some extra fluid to see if my symptoms improved. But, they were really surprised to find when measuring my pressure that it was well within the normal range. I was confused, surprised, and worried. They were also confused and unsure what to do next, so they decided to drain some fluid anyways just to see if my symptoms improved (something that I also thought was a good idea at the time). Now I should mention that before the LP another big concern of mine was a potential complication that they call Post-dural puncture headache, and the continued leaking of spinal fluid from the puncture site. My connective tissue disorder puts me at a higher risk for this because my tissue is weaker and doesn’t repair or heal itself properly. Within hours of the LP it was clear that I was suffering from exactly that. The pain from the headache if I’d sit or stand up came on quickly, and severely. Likely made worse by the spinal fluid that was already drained during the LP and the fact that it was drained despite my pressure being perfectly normal to begin with.

While most leaks eventually seal themselves and the headaches and other symptoms then resolve, I knew that in my case my tissue likely wouldn’t be able to do so by itself. When this happens they do another spinal injection, called a blood patch, where they inject some of your blood into the area around the puncture site, which triggers an inflammatory response and usually successfully seals the leak. Despite my telling them that my connective tissue disorder would almost certainly make a blood patch necessary, they said that they won’t do blood patches until it’s been a week because by then most leaks have resolved. This brings me to something that I noticed often in the hospital: when mentioning my connective tissue disorder, those who even knew what it was, would act as if it changes nothing in the way that they handle my case. This can be both frustrating and scary because your connective tissue is everywhere, and when it’s weak it has the potential to change nearly everything big and small about how your body reacts to virtually anything that done to it from a procedure to surprisingly medications. For instance, as I observed and pointed out near the end of my hospital stay, my tissue was necessitating the frequent changing of my IVs, because otherwise the IV would fail and my vein would end up inflamed and sore. Up until that point, they’d been trying to leave the IVs in for as long as they would with any patient, and my weaker tissue couldn’t handle it. This happened many times without anyone taking into consideration my disorder, despite me frequently mentioning it.

As for waiting an entire week for a blood patch; the thought was terrifying for me. The pain in my head was nearly unbearable at times, and even laying down didn’t fully resolve it. But what made it worse was that with my chronic pain, particularly my back issues, having to lay flat on my back for very long without being able to change positions is very painful. And now that was the only way I could lay. I couldn’t begin to imagine having to do it for a week, yet there was no other position that I could tolerate from the severe headache.

Pain, vomiting and frustration.

The next morning, I was told that my doctors had decided that they wanted to do an MRI. The MRI didn’t show anything that could be causing the swollen optic discs either. It did show that I had an enlarged pituitary, a sign of intracranial hypo-tension, resulting from the spinal fluid leak and confirming that the severe headache I was experiencing since the hours following my LP were from that. Considering all of the information my doctors in the hospital had on how my ICP hadn’t been increased, was now far too low, and continuously lowering still from the leak, and the fact that I was in that much pain because of it; I still can’t understand why they would ever think that it was a good time or decision to start me on a diuretic in order to further lower my ICP (which can be dangerous!). Given that my first dose of the medication was that evening (after doctor’s rounds) and I wasn’t aware that they were planning on putting me on it and hadn’t been spoken to about it, my nurse essentially gave me the option of either just taking the medication until my doctors could talk to me and authorize them taking me back off of it, or she could write down in my file that I was uncooperative and refusing to take my medication. So, since I’m not a very confrontational person and I was too tired and sick to argue it further, I took the medication, knowing it could likely make a nearly unbearable problem even worse.

Once I saw my doctors the next day they said that they agreed that I shouldn’t begin taking the medication yet (you think?!), with no explanation as to why they didn’t just agree with that in the first place without making me worse off with it instead. My pain was pretty excruciating at this point and I hadn’t really slept much in the past week with everything going on. My mom wasn’t a whole lot better off but she was there for me no matter what, and it was a lifesaver to have someone there to help advocate on your behalf because frighteningly at times, my treatment in the hospital (supposedly one of the best in Canada) was dismal and at times bordering negligent. I was left to deal with the horrible acute pain of everything going on with little more than what I take at home on a daily basis to begin with, and for the first few days because of some mix up with my medication forms, they couldn’t even give me ibuprofen. They eventually, after prodding, started to give me what they called a “headache” cocktail every 8 hours, which I was relieved and hopeful about. The cocktail was an IV anti-nausea medication, followed by an IV drip of an NSAID (ketorolac). I thought maybe I noticed a slight improvement at first but soon – maybe from the still lowering ICP – it wasn’t doing anything but making me sick.

One of the things that they say is incredibly important with a spinal fluid leak is to get plenty of fluids. But by this point the low ICP (and the ketorolac) was making me vomit even just from trying to drink water. Despite being well aware of that, it wasn’t until I told my nurse that I was probably getting dehydrated and should be put on fluids that she said she’d mention it to my doctor. A few hours later they had eventually hooked me up to fluids, and I continued to not be able to eat or drink without throwing up. But still, after 24 hours of not having to urinate once, I was pretty sure that I was still dehydrated, perhaps severely at this point. This was when I found out that the amount of fluids they had put me on was equivalent to about a cup of water a day, which is well under the needed amount for an average person, never mind someone who’s both leaking spinal fluid and continuously vomiting. I told my nurse that I couldn’t drink anything and wasn’t getting enough IV fluids and despite all signs clearly and obviously pointing to that being a major problem, she still seemed unsure about it. So, instead of upping my fluids immediately, instead, to see if that really was the reason that I hadn’t been urinating, she insisted on first scanning my bladder for an obstruction. I had to so strongly point out all of the reasons that dehydration was going to be the problem that I was starting to get weepy and exhausted because I couldn’t understand why I was having to fight for this in the first place. It’s hard to explain how this feels; when you’re in severe pain and unable to move, frequently throwing up, and having to literally argue the importance of the most basic human need (water) to the people who are supposed to be taking care of you. I felt like I was constantly fighting for the simplest things in the hospital.

I want to say here that I’m a very easy going, compliant and non-confrontational person, often to a fault. I have a difficult time sticking up for myself, even when it’s right and needed. I also understand that being a nurse is a very difficult job. They deal with an incredible amount and they do one of the most important and demanding jobs that there are, often without thanks. But, that being said, there’s also a standard of care in hospitals, and it’s frustrating, and frightening when that standard of care is repeatedly not being met, or when the simplest things are made difficult simply because you’re not being thought about as a human being or listened to. It’s an incredibly helpless feeling to be bed bound, and in severe pain, and to have the people with power over you, who are responsible for taking care of you, often failing in the simplest areas of that job. To end up dangerously dehydrated while your in the hospital seems unacceptable to me, particularly when someone is repeatedly pleading with you to do something about it.

There were so many instances in the hospital that made me feel that way. There were days where I was informed that they hadn’t ordered a medication that I was on from the pharmacy yet (spoken as if it were no big deal) and was told that I’d have to miss a dose, and I’d then have to make a point of fighting just to get a medication that I had managed to never miss a single dose of at home. There was also the time that my IV machine kept repeatedly beeping in the middle of the night indicating a problem in the flow of my IV and despite me telling my nurse multiple times that I could feel fluid dripping down my hand, instead of simply looking at it she kept trying to adjust the machine or untangle the cords. Then she’d go away for a few minutes only to have to come back again when it would start beeping. I felt pretty badly for my room-mate that night. When she did finally turn on the big light to check, my IV was leaking blood and fluid down my hand which had been the problem, so now she had to try to do another IV in the middle of the night. Two hours since the first beep, two nurses trying, and 3 IV pokes later the problem was finally resolved when it could have been almost immediately instead.

Unanswered questions, an uncertain diagnosis and it’s connection to my disorder.

My neuro-ophthalmologist was surprised that my ICP hadn’t been high. He was certain that must be the problem because none of the other scans and tests had shown anything else that could be causing the optic disc swelling. He wasn’t entirely sure of what to do to help my eyes at that point, so decided (as mentioned earlier) that the easiest course of action for now would be to put me on a diuretic, just to see if there was any improvement and then to watch me closely in case my vision deteriorated. We decided that the med should wait until my ICP recovered from the spinal fluid leak, and then we would slowly begin the new medication (which can be difficult to tolerate). I felt really frustrated, not at anyone, just at the fact that here I was again, in a difficult medical situation with no clear answer.

Luckily for me, someone with the ILC foundation that I often correspond with and who knows and works with many others with my disorder, as well as with possibly the top neurosurgeon in the world dealing with problems related specifically to our rare disorders, helped me get some answers. I later found out that there is indeed a link between both high and low ICP, and connective tissue disorders such as mine. It seems that for whatever reason (they haven’t been able to figure it out yet), our bodies can’t always regulate our spinal fluid flow and “draining” system properly, which can result in an ICP that can fluctuate between being normal, to too high, to too low. This can cause symptoms like headaches that can come and go, and when the ICP irregularities are prolonged this can cause symptoms like swollen optic discs. And while I’m not happy to have another rare, often unknown side-effect, of an already rare, often unknown disorder, I am glad that I’m not the only one and that there are some answers out there. It made sense as to why my ICP was completely normal when it was measured despite all of the symptoms and signs I’d been experiencing pointing to it being too high before. This problem, whatever the cause, can be difficult to treat, but that was a bridge I would cross once and if I got there.

I wasn’t sure how I was going to do it but slowly each day dragged on and ultimately passed by. My symptoms briefly improved enough for me to walk up and down the halls outside of my hospital room a few times, holding on to my mom, but they quickly went back to how they had been, picking up new symptoms along the way. I started having problems with my hearing in both ears which I was certain was from the low ICP, but at the time the resident neurologist, who I saw the most during my hospital stay and who tried to do my LP the first time, told me that it was physically impossible (not even just unlikely, but impossible) that my low ICP and my ear problems were related. This scared me because he said it with such certainty, and I was now thinking that either something else was now wrong with me, or that I was losing it and it was just in my head. Frustratingly, we later found out the ear related symptoms I was experience were in fact one of the most common symptoms of low ICP and was absolutely caused by my spinal fluid leak. Which strikes me as the kind of thing that he should know, and if he didn’t know then I wish he would’ve just said so instead of telling me that the thing I know that I’m feeling is actually impossible.

Blood patch and being discharged from the hospital.

Eventually, when it was finally nearing the week mark since my lumbar puncture, it was decided that it was time to do the blood patch to seal the spinal fluid leak. I can’t even begin to explain what an enormous relief that was to hear. I was also a bit afraid, knowing that they’d have to do another spinal injection in the same spot, but without radiology. Luckily for me the anesthesiologists had a much easier time than the neurologists had. It took him three attempts, but he interestingly used the nerve pain it was causing to help him find the right spot. When he brushed a nerve (unfortunately for me) the first time, he asked me which leg I felt it in, and when I said the left, he seemed to move the needle over to the right side, and when I felt the pain again, but this time in my right leg, he moved the needle ever so slightly back to the middle, which worked.

Blood patches are not a guaranteed fix for a spinal fluid leak which scared me. I was told that they work about 80% of the time, but I felt like it was doomed to fail after everything else that had gone wrong. They often work immediately but as much as I wanted to say that it had worked when the doctors asked me, I noticed no improvement whatsoever in the hours following. So, we were told not to give up hope and that it was very important that I lay flat on my back and not move, because that just might get it to work. And eventually, ever so slowly, I started to notice a gradual improvement. By then, I was so desperate to get out of the hospital and so happy that I could see a light at the end of the tunnel, that I played up how well I was already feeling as much as possible and told them I was certain I was good enough to go back to the hotel. Even then I was fully aware that I should have waited at least one more night in the hospital, but that stubbornness kicked in again. I was still in pretty bad shape, and both sitting and standing for too long were still incredibly painful. By the time I exited the taxi and made it to my bed at the hotel it was nearing my limit of tolerance, but every hour I found myself able to sit and stand a little longer each time I tried.

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Saying goodbye to my hospital bed!

We had one last appointment with my ophthalmologist to see how my eye infection was doing, which was also pretty hard to get through pain-wise, but it also signaled the longest that I’d been able to sit and stand since my lumbar puncture, and that I really was on the mend.

Getting home, and how things are a year on.

Before long we were on an airplane home, finally, a few weeks after we’d left. But frustratingly, we were returning with a lot of unanswered questions and uneasiness, on top of the incredible relief. My optic discs weren’t better, and the lack of a concrete, simple explanation for what was going on left us worrying about how or if we’d be able to treat it.

During my hospital stay, because of the trouble we’d had with my IVs, I also ended up with thrombophlebitis which is an “inflammation of the wall of a vein with associated thrombosis”. It was in the hand that 2 (out of 4 or 5) of my IVs had been in, both of which ended up having problems and leaking. The veins on that side of my hand have hardened and were at first red, visibly inflamed and often painful. While this condition can usually be avoided by changing the IV once a week, it seemed that with my fragile tissue even a couple days of an IV in the same spot ends up being too long.

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The residual redness and inflammation in the back of my hand and veins.

All in all, things have been up and down since then. The medication has been very hard to tolerate at times particularly in regards to my P.O.T.S. It takes many of the difficult symptoms of that and exacerbates them, particularly the fatigue and faintness. Often at times it can cause very painful pins and needles in my legs, but as my dose has decreased this symptom has nearly disappeared.

We travel to P.G. to see an ophthalmologist, at first once a month, but since my eyes have been relatively stable, now we go every 2 months. Then we travel back to the neuro-ophthalmologist in Vancouver first every 3 months and now every 4. Sometimes my ICP doesn’t seem to be too high and sometimes there are signs that it is indeed too high again (like a lack of pulsations in the back of the eye caused by increased ICP). The swelling in the optic discs tends to still be there, though this last appointment in Vancouver it was decided things were looking really good so we could try lowering my medication to see how things went. Now I’m waiting for my followup appointment in Prince George to see if lowering my medication caused a worsening of the swelling or pressure.

It was a bit of a difficult and scary year at times. And by the time I finally got home I was covered in bruises and reminders of everything that I had been through. But now, it’s hard to believe that’s how long it’s been since all of that kicked off. I can’t imagine going through any of it without my incredible mom. She was there every single step of the way, no matter how awful she was feeling or how difficult things got. I’m so, so lucky to have that support through things like this.
And, thank you to all of you for sticking around, and to the amazing few who actually made it through this novel of a post (I don’t blame you if you didn’t!).

– Katie ♥

The hospital stay.

Things can change so fast. And, likely not so dissimilar to a perfectly healthy person, life is full of highs and lows, peaks and valleys. I won’t deny that often during the lows, as a chronically ill person, it’s very easy to get lost moment to moment in how you wish things were and how unfair it feels that your life has been and will continue to be this way. You can forget to just be grateful for the things that you do have, because you’re constantly being reminded of the things that you don’t or can’t. I think it’s a pretty normal way to feel about things under difficult circumstances, and yet, even when I’m struggling with those feelings, I’ve always kept myself reminded of how lucky I am for my vision. Even – or perhaps especially – when something happens to decrease it further. I know that the vision that I have at any given moment isn’t guaranteed and so I make a point of reminding myself often to cherish it – and I absolutely do, above nearly everything.

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It’s been a long year and there’s a lot to cover, so I’ll have to break it up and stretch it out a bit. Hopefully it doesn’t end up being too disjointed, but with everything that happened and my brain it very well might be. To start with, I wanted to explain a bit about everything that happened last summer, and what has changed since then because of it.

The first signs that something’s wrong.

On the 1st or 2nd of July (last year) I woke up with an intensely painful right eye, (which is actually supposed to be my good, “stable” eye). When I was trying to figure out if it was an emergency or not, I lifted up my eyelid and could see that a couple of the sutures (visibly sitting just below the surface of my eye) from one of my previous lens surgeries were very red and irritated. Shortly after, the optometrist confirmed that one of the sutures was indeed poking out (again) and would likely need to be removed via laser by my longtime surgeon in Vancouver. Since we were already scheduled to see him near the end of the month to check on the lens issues that I was having in the other eye, we were assured by my optometrist that as long as the pain wasn’t unbearable then it would be perfectly alright to leave it be until then. He had even suggested that maybe if we got lucky the friction caused by my eyelid rubbing over the suture repeatedly might even file the suture down on it’s own (yes, ouch!).

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Believe it or not: this wasn’t even the worst my eye would end up looking that particular week.

This all happened to be going on at the same time that my baby nephew (who I hadn’t seen for months) was finally in town staying with us and I desperately didn’t want to leave him almost as soon as he arrived, so I kept trying to hold out, despite how surprisingly severe the pain was often getting. As the days passed though, I started noticing alarming visual symptoms in that eye, at increasing frequency. Looking back on it now, it seems like things started to happen and change very quickly in the days that followed. I had now started encountering flashes, trailing images and tunnel vision in that eye with shocking intensity. Despite everything that I’d been experiencing throughout my life with my eyes, nothing had ever come close to effecting my vision like what I was now going through. Reds appeared dull and faded, and I started finding that I often couldn’t see anything at all in dimly lit rooms. And I knew that even if it was to blame for some of my symptoms a protruding suture shouldn’t be causing all of them – not to that degree. I knew that something serious had to be wrong, how could it not be with what I was seeing on a daily basis? And yet, I kept making emergency trips to my (very understanding) optometrist, who kept looking in my eye and seeing nothing that indicated any problems aside from the still protruding suture.

I was stressed out, confused, and frightened. The fear and sense that something was dangerously amiss kept me going back to the doctor, nearly every single day, despite being routinely told that everything looked perfectly fine and that it was still safe to keep my end-of-the-month appointment in Vancouver. Finally, after nearly three weeks had passed since that day I woke up with a sore eye, I started experiencing transient episodes of extreme double and blurred vision. This was essentially the last straw for both my mom and I’s nerves and fears about what was going on. I was frazzled and exhausted but I felt that I had no choice but to pack up that night and head to Vancouver first thing in the morning by bus, wondering the whole time if maybe I was just crazy or overreacting. In the morning, we figured with the drastic change in my vision so quickly the night before that we should go see my optometrist one more time before I left. He decided to dilate my eyes to get a better look (which seemingly should have been done already), and was very surprised to find that my optic disc was swollen – an unusual find, especially at my age. The optic disc is the head of your optic nerve (what connects your eye to your brain and transmits visual signals). It’s also the entry point for the major blood vessels that supply the retina, and a swollen optic disc can dangerously compress those blood vessels and lower blood flow in the eye. It also indicates the presence of a potentially serious condition.

Many things can cause optic disc swelling, all of them pretty serious, and none of them particularly pleasant. At the time he noted that only one looked swollen, which suggested it wasn’t anything as serious as increased intracranial pressure but none the less, after speaking with my ophthalmologist in Vancouver about the find, it was decided that it was best we get down there immediately. We hadn’t really slept in days with everything we’d been dealing with but following that my mom and I ended up catching the next flight to Vancouver so that we could see my ophthalmologist early the next morning.

Vancouver appointments, swollen optic discs, and an abscess.

Thus, we began the first of what would end up being weeks of exams and scans and were soon informed that both of my optic discs were in fact swollen, with the right being worse than the left, and that blood flow was also noticeably decreased in the right eye. I was really surprised and genuinely hadn’t been expecting any of those things to be happening. I was also admittedly scared, knowing that both discs being swollen signaled something potentially very serious. This was entirely new territory and nothing that I was aware of having a direct connection to my tissue disorder, so, I was potentially looking at an entirely separate medical condition, on top of the debilitating one that I already have. My eyes were being dangerously threatened again, despite not having completely recovered from everything else that had previously gone on (and was still going on) with them.

Swollen optic discs have the potential to cause both retinal hemorrhages and complete blindness, especially when advanced, so it was terrifying when my ophthalmologist said that he suspected that the discs had been swollen for quite some time. We hadn’t even had time to fully process the implications of all of that before we’d been hit with another equally as frightening problem, one that seemed to alarm my doctor even more; my protruding suture had developed into an incredibly dangerous abscess/infection. Yet somehow and worryingly, I had absolutely none of the hallmark signs or symptoms of that type of serious eye infection and if we hadn’t gone to Vancouver for the swollen optic discs it would never have been discovered in time. What makes these infections so dangerous is that, if they reach the inner parts of the eye they can cause catastrophic damage, sometimes to the point of necessitating the removal of the eye itself. The chances of these two serious, completely unrelated conditions happening at the same time are nearly non existent. And yet, here I was, in the midst of exactly that.

Both issues were going to have to be dealt with as soon as possible. First, anything that causes optic disc swelling in both eyes is caused by something that is wrong with the brain, so I needed to see a neuro-ophthalmologist first thing on Monday morning (it’s nearly impossible to find one in an emergency situation on the weekend). As for the abscess, we had to fight it hard with antibiotics and watch it very closely. I was told to put an antibiotic drop in it once every hour, around the clock (even during the night) and a steroid drop twice a day. I had to see an ophthalmologist at about 6 or 7 am both Saturday and Sunday morning to see if the infection had improved at all, and both times it hadn’t gotten any worse, but it also still hadn’t improved despite the high dose of antibiotics. So, we were prescribed another antibiotic drop on top of the one that I was already using, (both still every hour) making a grand total of 50 drops a day, including the steroid drop I was also using twice a day. The dose of antibiotics was so high for an eye infection that the pharmacist dispensing them at first thought that the prescription must be a mistake. With waking up once an hour, to do two drops, 5 minutes apart each time, it’s safe to say that neither mom or I were getting any sleep.

The neuro-ophthalmologist, and ending up in the hospital.

I can say this now, I’m really glad that I had no idea what was in store for me Monday. I was relieved to find that my neuro-ophthalmologist seemed to really know his stuff. He was quick and direct to the point, but also empathetic and personable. I felt like I was in very good hands for once. He said that he suspected that I had increased intracranial pressure, but that he also couldn’t rule out other things like a brain tumor or MS. He thought it best considering the seriousness of what he found that I be admitted to the hospital where they could immediately start investigating what was going on. Especially since we’re from such a small, far away town and wouldn’t be able to leave the city until they knew what was happening.

Looking back, everything seems like it moved so quickly after that, but living it was a very different story. It took about 9 hours for me to be taken to and fully admitted to the hospital (a tough day for two chronically ill people). The morning after, 5 neurologists of varying experience levels (I was in a teaching hospital, which I sometimes learned the hard way), came to do another visual and neurological assessment. They also suspected that given my age that I was most likely suffering from increased ICP as well. They let me know that they’d be doing a CT scan and if that was clear, a lumbar puncture. At this point, of all of the things that could be going on, increased ICP was the best diagnosis that I could hope for, so I was happy when the CT scan was clear of things like brain tumors.

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Abscess, antibiotic injection and suture “removal”.

Also on the day after being admitted to the hospital I was taken by hospital bus with my mom (because I was a patient on the neuro-ward I wasn’t even allowed to walk outside by myself, understandably), back to the ophthalmologist dealing with my eye abscess. We were still doing the 50 drops a day and yet even after all of that it somehow hadn’t improved. So, at that point we decided that it would be best to inject the antibiotics directly into my eye, and the infection, to hit the abscess even harder, and to let me get some sleep at night finally. I was not looking forward to this. In spite, or maybe because, of everything that I’ve been through with my eyes I’m quite squeamish about the thought of anything poking my eye. Although, I doubt that feeling’s unique to me. But, despite my reservations, I knew it needed to be done, so while my mom quickly walked to the pharmacy to get the antibiotic to be injected, I sat quietly and steeled my nerves. After the injection he would also be lasering off the part of the suture that had caused the infection in the first place. I’ve had this particular procedure done before, so I already knew that it was a fairly unpleasant one.

The eye injection was very difficult. It was quick, but the pain it caused was very jolting and unexpected. He said “little pinch” to let me know that there’d be some pain when he moved the needle into my eye a little bit, and it hurt quite badly, but I thought it was over. When he said “okay, now big pinch” and moved the needle in further, I had but a fraction of a second to realize what was coming. And it hurt. I can still, nearly a year later, vividly recall exactly how it felt and how shocked I was at the severity of it. I could tell that my doctor felt bad about it all and he apologized profusely. Afterwards my eye took a while before I could finally get it to open and it had stopped watering. It was definitely difficult, but it was necessary, and in the end, I was glad that it was done. Maybe now my eye would start to mend.

After the injection the laser procedure, though unpleasant, was a walk in the park. When it was all over I felt really relieved, but also proud of myself for enduring it all and doing it so calmly. I know I didn’t have much of a choice, but when we’re pushed we’re often surprised at how strong we can be, and that’s definitely how I was feeling. And, it was all well worthwhile because afterwards my eye began to get better continuously, and the worry of just how close I’d been to something catastrophic, began to subside.

The multiple lumbar punctures.

The lumbar puncture was another incredibly punishing experience. To start with, whatever’s wrong with the part of my spine that they need to do the puncture at, makes it unbelievably painful if it’s pushed on, even slightly. And for a lumbar puncture (which I was already a bit anxious about) they need to push on that spot, a lot, in order to landmark where they need to put the needle. That itself was so painful that I kept thinking to myself if the lumbar puncture hurts less than this it’ll be a breeze. I had a bad feeling about the way the lumbar puncture was going to go from the start. But I kept telling myself that it was just my nerves talking and that everyone probably feels that way right before getting one. But the resident neurologist that was doing the LP was having a really hard time finding the place that he was supposed to mark for the puncture. So, we decided that he would try to do the LP twice and if he couldn’t do it then they would just get radiology to do it with an x-ray another day.

The thing is: I’m stubborn, and I knew that if they couldn’t get the LP to work that day it could mean days longer that I’d be in the hospital waiting for an opening in radiology. I desperately didn’t want that. The injection of the freezing wasn’t particularly pleasant but it wasn’t too bad, and they usually say that’s the worst part. So when he had tried unsuccessfully 2 times, I felt okay to tell him that he could try a few more times. He did, but was still having no luck. So he went and found a colleague to see if he’d have better success. I was feeling pretty stressed at this point and the longer they both tried it the more frequently they were brushing the nerves that send signals from the brain to your legs. I was told that this in itself wasn’t really anything to worry about, but it can be very painful and sometimes it was excruciatingly so, especially if they weren’t fast enough in withdrawing the needle once I’d told them that they’d hit a nerve again. To be honest, I lost count of just how many times they tried back and forth. My conservative guess is somewhere around 9 but I think it may have even been more.

By the end of it I was an emotional and physical wreck. The hardest part was not knowing when that awful pain in my legs would start again, how long it would last, or how bad it would be, and by the time they finally gave up it had happened so many times to such a horrible extent that I was incredibly tensed and stressed and I was close to not being able to handle it anymore. I was also so frustrated that I had gone through all of that for nothing and would still have to stay in the hospital and wait to go and get it done again. I had so badly just wanted to get it over with so I could stop stressing about it and we could finally figure out what was wrong. I tried so hard to tough it out, even when I was at my limit for pain, and it ended up being for nothing. I also wouldn’t have even worried about that if I had known just how quickly a spot was going to open up for them to do it with the X-ray (the next morning, not even 24 hours later).

I was pretty stressed going into the lumbar puncture the second time. My spine was severely bruised from the last time (even the radiologist was surprised at the extent) and still very sore, and now I knew how much pain it can cause when a nerve is brushed, which was what stressed me out the most, by far. But, I was told that it would be quick and easy with the X-ray, even though I – rightfully – had my doubts. The doctors doing the LP this time were having a harder time than they expected right off of the bat. And from their conversations I could tell that wasn’t a very common occurrence. I kept thinking “oh great, just great, here we go again” and “how am I going to get through this again?”. The first attempt didn’t work and when I asked what was wrong I was told that the degree to which my spine was crooked at that spot was making it hard for them to do the LP, even with X-Ray guidance. To my incredible relief, they were able to eventually get the second attempt to succeed, and I foolishly thought to myself “I did it, the hardest parts are over now”. What I thankfully didn’t know at that moment was that I still had another week of hell to go through.

I split this post into two parts (the second of which I’ll post tomorrow) because of how ridiculously long it ended up being. If you even made it this far I would consider it a miracle.

Better late than never.

Apparently the writer of this blog has fallen off of the planet altogether. Or, at least that’s what it may have seemed like after over 18 months of complete radio silence from me.

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Things can change very quickly when you’re living with a chronic, degenerative disorder, and when they do writing updates about it (on the blog you chose to start specifically for that purpose, mind you) can rapidly evolve into a fairly daunting task. My disorder’s rare and complicated and it can drastically change how my body reacts to even the most routine of medical interventions and procedures, so explaining any new developments in it’s progression can often require that I take many branching, long-winded detours into explaining all of the relevant factors involved. So, inevitably I procrastinate writing the update, all the while my illness continues to throw new complications and side effects at me, adding to that ever-expanding list of what needs updating, and so on.

Fortunately for me, in the grand scheme of this thing called life the difficulty with which I maintain this blog – that I elected to do in the first place – is about as trivial an issue as it gets. Still, that’s how it might just end up that before you know it it’s been a year and a half since your last update, instead of the week or two that you had planned on making it to begin with. Good job Katie.

The other reason that I found it difficult to commit to writing was the severity of the effects that my disorder was (and  often still is) having on me over this past year. This was both because it’s difficult to think and write when you’re very ill, but also because this was a dark and frightening time for me and I’d been stubbornly hung up on wanting to write some posts that were lighter in tone after the more serious ones that I’d been churning out since my eye started having problems again. I worried that people may not want to check in anymore if the tone of the blog seemed constantly dark and dire (apparently I figured people would prefer to check in and read absolutely nothing, instead). But, avoiding the worst of my disorder goes against one of the core things that I’d set out to do with this site, which was to write about the reality of my illness. Not how I wish it was, or how I want others to think it is, but how it actually is, even when that means that the tone of my writing will at times be dark and depressing.

In all honesty though, I do apologize for disappearing without so much as a word for such a long time. Luckily for me, the most serious consequences of that would likely have consisted of a simple thought here or there about where the Tissue Tales girl may have gone off to, or whether she’ll ever post again. That being said, I received a number of really kind and much appreciated emails from some of you, who were just checking in or saying hi, and I thank you very much for that. It’s nice to be thought of once in a while and the support that writing here has afforded me from and through all of you guys has been incredible and deeply cherished. There is such a sense of understanding and caring from the individuals and groups that I have been fortunate enough to have been introduced to through this blog, and I do miss it immensely when I’m struggling or away for very long.

So much has gone on since my last proper update that I’ve been wanting to vent about and share with you; starting with what has essentially been the catalyst of everything that’s gone on in the last year – my stay in the hospital – and the complications that lead to it in the first place. That’s the first and lengthiest thing that my update needs to cover, so from here on out I’ll be working on posting that, and afterwards some of the other things that have gone on.

Once I’ve more or less filled in all of the gaps of the past 18 or so months then hopefully I can get back into the routine of blogging regularly again. I have desperately missed this, and all of you, that’s for sure. For those of you that are still here after all this time: thank you so much for sticking around, I really appreciate your patience and continued support. You’re fantastic, as always.

– Katie

We always carry on, and sometimes it gets easier.

First of all, I want to thank each and every one of you for all of your support. It seems so strange to think about how many people took the time to read it or share it on Facebook – I’ve never had that happen with such a personal post before and I really appreciate the response.

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Things have been easier since my last post. Of course they aren’t perfectly okay, but I’ve been coping really, really well. I feel much more hopeful about things than I have since everything happened. We’ve been waiting to hear back from my regular surgeon for the past two days but were told to call him today if he hadn’t gotten back to us yet. I’m really hoping that he’s taking the time to read thoroughly through my novel-sized records of eye history so that he can figure out what the best course of action is. Besides all of the surgeries themselves there’s so many incidents here and there throughout the past 10 years or so that could have an impact on how things need to be handled. I’m a bit nervous about what he has to say, but we’re basically waiting to find out whether or not we need to head to Vancouver to see him now, or if we could maybe just wait until it fully lets go.

Both of the above options have their pros and cons. While I want nothing more than to just wait and watch it for now, it’s a lot harder when it becomes an emergency and everything now needs to be done immediately, instead of in a way where things can be planned out – especially since we are 8 hours away and can’t drive there ourselves. I have to go to Vancouver for my cardiology appointments in March and it would be best if somehow the lens managed to hang on until then. To be honest, what I really hope is that it’ll just hang on like this forever. I know that’s very unlikely, especially with my history, but it’s still not impossible, and it’s the only thing that I’m able to grasp at right now.

Under normal circumstances the new visual change would be really disheartening, but I can honestly say that I could live like this for the rest of my life – and to be honest, I’d be incredibly grateful to do so at this point. My brain is adjusting to the vision change surprisingly well – I realized the night before last that I had been able to spend the entire day without using my eye patch. And I did so again yesterday. I’ve even been drawing sometimes, which makes me happier than I could ever say. The thought of losing that incredibly important piece of my life terrifies me more than almost anything, and to have it right now, when I wasn’t sure that I would, has meant a lot.

It also puts my mind at ease to know that my usual ophthalmologist is at his practice and in the country right now, because he’s often gone for weeks or more and we weren’t sure if we’d be dealing with him or someone we’ve never met. I do worry that he’s going to be leaving again soon and that he’ll want us to go down there to have things looked at regardless of whether or not he’ll be doing surgery at this point. I can understand why he would want to do that though, if he knows that he’ll be out of the country soon I imagine that he would want to check on things himself. Let’s just hope that’s not going to be a problem. It would be so, so much easier if we lived closer. I know it’s not the end of the world, but the travel and being away from home is definitely hard financially, emotionally and physically, on my mom and I both.

My family doctor phoned me today, wondering what was going on with my eye and wanting us to let them know as soon as we’ve talked to the specialist. It hadn’t even crossed my mind to phone and let her know what was going on and I was surprised to hear from her. Usually when anything happens with my eyes my other family doctors haven’t been involved at all. But, she told me to let them know immediately if I needed to make an appointment with them and that they’d fit me in whenever. I’m glad that they phoned, it’ll be good to be able to talk through everything with her and let her know a bit about what we might be looking at. Often when you hear that someone might need eye surgery you assume that it’s no big deal, and that is the way the first 5 were for me too. The pain was really minimal, to the point that I just remember the stitches being a little sore, and I healed unbelievably quickly. But the last two operations were riddled with complication after complication, and more pain than all of the other ones put together. I took 6 months to heal and my vision was never the same after. All in all, I really appreciate her support and interest in what’s going on, it makes me feel a lot more secure with everything.

That’s about all that I have to update everyone on for now. Again, I want to thank all of you for your incredible support and kind words. It makes such a difference in my life and makes me feel so much less alone. I know that I’m unbelievably lucky for it and to also have such a caring supportive mom by my side.

Big hugs to you all. xx
– Katie

It’s hard to go through it again.

On Saturday something fairly heartbreaking happened to me medically. I wasn’t sure whether to post anything about it until I have some more answers, but I found it fairly therapeutic to vent about at the time and would like to post it. This is from the day that it happened. I’m sorry that it’s not the most positive of posts, but this has been really hard and it’s how I sincerely feel about what’s been happening.

It’s 5:30 am when she decides that she can’t fall back asleep anymore. She finally got a decent night’s sleep though, so she’s happy to get up today. She turns on the light and immediately realizes that something is wrong – out of the corner of her eye she notices the edge of her lens implant has come largely into view. Every time she moves her eye her entire visual field bounces and distorts along with it. Her heart rate shoots up and all she can think about is how badly she doesn’t want to go through this again. She’s been here before. She knows how this works and largely what’s coming next.

The day ahead of her now consists of ER and emergency optometry visits.  And she knows that the next few days will be filled with wait and worry. These are the things that she must now face, but it’s the uncertainties that frighten her the most. She will need surgery again, that is all but guaranteed and she knows that this time they may not be able to fix her eye. They have to be smart about this decision because anything they do to her eyes now would result in further damage – her tissue is weak to begin with and it’s been significantly further weakened with every lens subluxation she’s suffered. She’s only 21 and her vision is the most important thing in the world to her – and now the future of it is up in the air yet again. Every option they have is filled with uncertainty and potentially devastating consequences. She hates to be afraid but she is. The last two eye surgeries she had were filled with so many complications. They were far more painful than anything else she’s been through and instead of taking a month or two to heal it took 6 months. Her vision hasn’t been the same since – never nearly as good. But she’d give anything to have that vision back right now.

On Monday they will begin to put a plan into place of when she will likely need surgery. It would be so much easier if she didn’t have to travel so far for them, and during the holidays too. The surgeon that she’s had since she was 4 might not even be in the country right now, and she fears ending up with someone different with her complicated disorder and history. Her other eye concerns her too – if history repeats itself the lens in this eye could also dislocate within the next few months, just as it did last time. She tries not to dwell on those what ifs right now, they do her no good. So instead she puts one foot in front of the other, no matter how desperately she wishes she didn’t have to. She’s thankful that she’s not going through it alone and has her mom by her side. She’s coping fairly well, but it’s hard not to think about because it’s in her vision every second of the day reminding her. Eventually she starts covering it with a patch – it aches and makes her dizzy and the patch eases those issues and lets her think about something else.

The lens is still hanging on for now – last time it took a week to fully let go. She’s not even sure what she wants at this point – part of her just wants to get it over with, the other part of her is hoping beyond hope that it keeps hanging on just a little while longer. She worries that leaving the lens to pull through the tissue where it’s still attached is a bad thing to do and will cause a lot more damage in the end. But, she knows that her surgeon wouldn’t risk operating on her while it’s still attached. There are no good options, she feels suspended and numb, like she fell asleep and is just now waiting to wake back up. If only she could.

Talk About Your Medicines

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As I mentioned in my last post, I was asked by the American Recall Center to participate in their November medication-awareness campaign. For their own awareness article they’ve written specifically about the oral anticoagulant Xarelto and some of the dangerous side effects that have been recently linked to it. To read that article click here.

As someone with an incurable illness, medication – like it or not – is, and always will be, part of my everyday life. It goes hand in hand with the quality of my life and has the power to hugely impact how I feel from one minute to the next. While I definitely wish that there wasn’t a need to be on it all of the time, there is, and that’s the reality of being chronically ill. So, here’s a bit about my personal experiences with medications.

Before I had even gotten the correct diagnosis (at about 15), I had been tried on so many more medications than I can accurately remember now. And, as is the way it often goes, virtually every one of those was ineffective or unpleasant. Some ranged from simply not working for what it was prescribed for, to being debilitating or landing me in the ER. Most of the medications I’ve been tried on thus-far have been to counteract two of the most difficult aspects of my illness: insomnia to an often extreme degree, and chronic pain. Sadly, these are two things that are very complex to treat. There’s not one simply safe, fix-all pill for either.

As with most medications, you have to weigh the benefit against the risks and decide whether it’s worth it or not. You also need a doctor who’s willing to help you find what works best for you in your unique situation. I’ve always been really disciplined with medications for both sleep and pain. I’ve always made sure to only ever use them when absolutely necessary and have kept myself thoroughly educated about the numerous downfalls and dangers of both. When my pain did eventually become crippling enough that it was necessary to have round-the-clock pain medication in order to cope with it, I found it really hard to come to terms with. I never wanted to be on that kind of medication for the rest of my life. Having to take that step made me feel weak, even though in reality by normal pain standards, my levels of pain were still at a fairly extreme level all of the time. Aside from the physical consequences there’s also a great deal of stigma and ignorance surrounding pain medication, even when it’s being used appropriately and solely for pain.

My opiate medication’s side effects are quite limited overall compared to the other classes of medications I’ve been on, but it’s still not without it’s pitfalls. For instance, when used long-term your body’s natural pain-killers forget how to do their job properly. Your body also eventually adjusts to the medication and starts to need more of it in order for it to keep working on your pain. This is called “tolerance” and is an unavoidable side effect of opiate medications when needed for an extended amount of time. Opiates can also cause nasty “rebound” headaches in many people when used for more than a few days in a row. And while it’s been proven that people who suffer from chronic pain are generally much less likely to become addicted to pain medications than others (for various physiological and psychological reasons) it’s still a risk and must be taken seriously. I wrote about all of these things a few years ago in this post.

It’s been just over a year now since I was put on a consistent and constant dose of pain medication, and while it’s made my otherwise crippling pain bearable, it hasn’t made it disappear and it hasn’t been without it’s consequences. I still struggle with my pain to some degree 24/7 and most likely always will – there’s just no simple fix for that. Still, I am extremely grateful that this has been available to me, especially knowing that in many countries and situations it wouldn’t be. I can’t even imagine being able to handle that kind of pain at all never mind being able to find any enjoyment in life with it.

Sleep medication has always been difficult as well. There’s a viscous circle that having both insomnia and chronic pain results in. I often can’t sleep because of my pain levels, which keeps my body from getting any rest or break, which in turn causes my pain levels to increase tremendously, again making sleep impossible, and so on. The medications I do use on occasion to help me fall or stay asleep often won’t work during bouts of my more extreme insomnia. They’ll often make me feel more tired, but still won’t allow me to sleep, which is horrible. Other times they’re a life-saver, allowing me to get some desperately needed rest.

I’ve been suffering from chronic headaches since I was a child, so many of the earlier medications that I was tried on (and there were many) were for this. These medications in particular were often horrible with their side effects. One of the worst side effect profiles I’ve ever seen, never mind only counting things that I’ve been on, was for a medication call Topomax or Topiramate. Topamax is primarily an anticonvulsant used in the treatment of epilepsy, but it’s been shown to improve migraines in some people. That’s why I was put on it about 3 or 4 years ago. I wasn’t made even remotely aware of the dangers of this medication and at the time had just assumed it was safe, otherwise my doctor wouldn’t risk putting me on it. I know that all medications have the potential for serious side effects, but despite the multitude of medications I’d been tried on up until this point, I had never even come close to experiencing effects as severe as the ones I had while on this.

Looking at the incredibly long list of serious and often permanently disabling or life-altering effects this medication can have, I can’t help but be angry that as a 16 year old I was put on it, without even a warning. At first, though it wasn’t helping my headaches things were generally going fine, but the longer I was on it the more symptoms I started experiencing and the more progressively severe they became. I had no idea that they were from the medication and because they were all neurological in nature I was terrified as to what was going on and why. The first thing that prompted me to start doing some research were eye tracers. I had assumed that because of my history with eye problems that it was just something else that was going wrong with them. While doing research on this symptom I was stunned to see the name of my medication come up as a common denominator, mentioned by about a dozen other people describing the exact same thing.

Other frightening side effects that I experienced while on this medication included nerve pain: I started getting these unpleasant electric shock sensations all over my body. Later I noticed this strong and unsettling pulse-like sensation in my stomach just above my belly button, which my doctor simply wrote off as anxiety. By far the scariest thing that I experienced was this sudden and extremely uncomfortable sensation throughout my body. For a moment it was like I couldn’t see or hear properly and then all of the sudden my legs went weak and I couldn’t think. I couldn’t even remember what I’d just been doing. The entire episode was brief but none-the-less terrifying. At the time I was sure that I must have just had some sort of mini-stroke. This was the final straw with this medication and without fail (thankfully) every single one of those symptoms disappeared for good once I had been weaned off of it (after doing some research and consulting my doctor).

Because everyone is so different, I do have to mention that overall my body has never tolerated medication very well. I often get the rarest of side effects, without the intended benefit. Because of this there are some medication classes that I can no longer be given at all. Two of which are SSRI’s and SNRI’s, which I had been tried on fairly early after my illness started effecting my day to day life. There are a few different reasons that these medications are prescribed in relation to chronic pain and illness. One is to help with any resulting anxiety or depression the illness may cause and the other is to help minimize the sensitization related effects that chronic pain has on the brain and body. See, when you’re in pain for an extended amount of time your brain begins over-firing pain signals. This is (as it’s been explained to me) largely because our bodies are not adapted to handle pain 24/7 – it’s unnatural – so what results is that our fight and flight response becomes heightened and overactive. So, while antidepressants won’t work on the root cause of your pain, they can sometimes help in calming or halting the amplification of the pain signals being fired out by your brain.

I’m not sure why, but early on when I tried various kinds of these particular medications I was able to tolerate them fairly well. I was never continued on them long-term due to their various moderate side effects, that weren’t worth living with because the medication wasn’t having it’s intended effect anyways. Eventually I went on a break for a year or two after being unable to find any that worked for me and being exhausted by the long process of searching for one year after year. The first medication that I tried when I was ready to start looking again was Cipralex. I had been on it for about two weeks and so far the only side effect of any note that I was experiencing was an upset stomach. But, out of the blue, I ended up with a very rare side effect known as urinary retention – the acute inability to urinate. I didn’t even know that was a thing and because I wasn’t really sure what was going on I just assumed that if I had to go desperately enough then eventually I would be able to – big mistake. I had purposefully been drinking a large amount of fluids thinking that if my bladder was full enough that I would simply and unavoidably have to go. Eventually, after not being able to for 17 hours despite trying for hours on end, it became clear that something was definitely wrong and I wasn’t going to be able to go at all. By then the pain had become so severe and unbearable that my mom had to rush me to the hospital where my bladder was immediately drained with a catheter. The nurse said that the bladder comfortably holds about 500 ml of urine and that by the time I’d gotten to the hospital mine contained 1200 ml. I was also told that I was lucky that no permanent damage had been done and that next time I should come in as soon as I know what’s happening (but they didn’t have to tell me twice!).

The doctor on call told me that it was undoubtedly from the medication and to stop taking it immediately (you’re usually supposed to be weaned off this type of medication for safety reasons). It took a little while for things to go back to normal entirely but luckily I didn’t end up having to go back to the hospital. My family doctor said I was the first person she had ever come across in her 20 years as a doctor that had suffered from that side effect. We assumed that it was just a severe reaction to that particular medication since I had been on several similar kinds before without that effect. Just to be on the safe side, the next time she tried me on that type of medication she decide to use the closely related SNRI class instead on an SSRI. Strangely, – after only two days this time instead of 2 weeks – this medication started having the same effect and I again ended up having to go to the hospital. This time, while my bladder was still working somewhat, it was becoming enough of a problem that I was unable to take any pain medication (they can also increase or even cause urinary retention) without it tipping it past the point of being manageable. Unfortunately, I happened to be in such an extreme amount of pain that day from a crippling migraine that I needed them to either try giving me a different type of pain medication or hooking me up to a catheter so I could safely take my own.

Again, I had to immediately stop taking the medication, but now we knew that for whatever reason I could no longer tolerate these types of pills at all. I don’t know what changed in the time that I stopped taking SSRIs and SNRIs to when I tried them again that made me unable to take them. I’ll probably never really know. I’m lucky that stopping them so suddenly didn’t cause any of the long term harm that it can. It’s frightening to think that just like that I could have ended up with another health problem on top of everything I was already struggling with that had necessitated the medication in the first place. My sharing these particularly negative experiences isn’t intended to make everyone afraid to take medication entirely. Everyone is different and we all react in our own unique ways to things. What may work miracles for one person may do the opposite to the next. It’s very much an often long, trial and error kind of process. I definitely understand how utterly defeating it can feel if you keep trying with no benefits to show for it. All I can really say is: try not to lose hope and keep trying for as long as you can. Keep informed: new things are always changing and being discovered and you never know what may be the answer for you.

One of the intentions I have in sharing these experiences is for people to hopefully realize that education is extremely important in regards to the medications you’re putting in your body. We so easily assume that our doctors know every side effect or interaction for every medication they place us on, when in reality that’s just simply impossible. There’s just far too many different kinds and specific variations in each individual circumstance. I’ve been prescribed medications many times that say specifically not to take them when suffering from some of the health problems that I’ve already been diagnosed with. I’ve also been prescribed medications that aren’t supposed to be taken with something else that I’m already taking. It’s definitely frightening and frustrating at times, but these occurrences are the reason that taking an invested interest in your own health – however you can – puts some of the control back in your hands and can make a huge difference. And while you always have to use the internet wisely and responsibly, we’re incredibly lucky that we live during a time where virtually any information imaginable is available to us with just a few clicks. This doesn’t mean that you should stop communicating with your doctor of course – you should always come to them about what you’ve learned and consult them before you stop taking a medication. Also, don’t hesitate to phone or go to your pharmacist with any questions or concerns that you may have. They are generally very knowledgeable and helpful when answering your questions.

Medications are often a very vital part of living as well as possible with a chronic illness. And while we can’t necessarily control whether or not we need to take it, we can control how much we know about it and what we choose to do with that knowledge.

Is this what you ordered, Sunny? by Aurelio Asiain

Do you need to take medication regularly? What have been your experiences – both good and bad – with it? Have you been able to find something that works well for you?