All I want for Christmas

All I want for Christmas is one day of normality. One day when I can get all my work done, when I don’t have to worry about getting it done, or have to walk that fine line between pushing myself to get it done, and knowing my limits and when to ask for an extension. that dreaded word, extensions. How I hate it.. I hate feeling like I can’t get everything I want to, everything I need to done.. I hate feeling like I am using my illness to get special treatment, even though I know how much I debate over asking for them, how many times I have turned them down when really I shouldn’t have, how guilty I feel about getting them… Most of all I hate how each and every time they remind me just how different I am from my peers.

I have, let’s admit it, been struggling with school lately. I’ve been struggling to make it to all my classes, struggling to pay attention even when I do, struggling to get all the work done and catch up all the work I’ve been missing. Just plain struggling. Coming into university I knew it wouldn’t be all smooth sailing. I knew there would be difficulties that I would have to learn to deal with. I knew there would be set backs, and that my experience wouldn’t be the same as everyone else’s (but then whose is?). But I got off to such a good start. It wasn’t perfect, but for me it was great, really really great. I so badly want to be in that space again. but I’m not, so now what…

 

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Contradictions

Having autoimmune arthritis is not easy, in so many ways. One of the things that I struggle with, and which I have been dwelling on lately is the contradictions in my feelings towards it. As with anything there is no one clear feeling that is attached, but what I find so puzzling and hard at times is how different my feelings can be, how contradictory they can be, all with in the space of minutes, or even existing together at times. It’s like this little inner battle inside of me, as I try to reconcile these two very different worlds of feeling. Often leaving me feeling exhausted, frustrated and sometimes guilty about how I feel.

Let’s take yesterday for instance. I go to see my rheumatologist for a follow-up visit after my MRI on monday, and to see how I am progressing since she made the change of meds (also my mom was in town, and it was important for both me and her that she met my rheumatologist). I get the news that my MRI came back clean, there doesn’t seem to be any signs of damage or inflammation in my hips. Which is great right? Then why is my first reaction a shoulder slumping, heat sinking feeling? Why am I simultaneously relieved and thankful for the news, but also upset that it didn’t show anything, that everything seems alright even though I hurt, even though I don’t feel quite alright? Then just to add to the party, thrown into the mix is my fear of being dismissed, or even worse, blamed. That I need to prove to my doctor that I am not crazy, that there really is something wrong, and they really need to take me seriously. How does one deal with this twisting, turning, confusing, and contradictory mass of emotions. How can I feel all these things, and yet not know how I feel, truly know?

Luckily I have a great paediatric rheumatologist at the moment, who doesn’t discount my experience for a moment. Who tactfully (huge emphasis on the tactfully) talks about how I do have autoimmune arthritis, and that is at play. But how because of everything I’ve been through, the intense presentation of my disease, the needless surgeries and countless other thing, pain amplification is at play too. Which hopefully over time, with appropriate treatment and exercise will fade. I came out feeling good about the thing as a whole, mostly. I guess it’s all just really a bit of a balancing act really, emotions included.

 

A bump in the road

For a while now things have been going so well. I have been able to get around wherever I want, attend all my classes and even participate in a college sport, diving. It seemed like everything was mostly under control. There were some things that had stuck around, and things that came up every now and again, but for the most part I was feeling good. Certainly a whole lot better than I have felt, in what seems like ages. Like all things autoimmune though, I knew I was good, but that didn’t mean I would stay that way forever. I knew I needed to appreciate each moment, because who knows which one might be my last. I knew all this, I knew I could feel great for months or years or maybe just weeks, or maybe I would continue to get better, maybe even go into remission. Who knows. But even while I knew it might not last, I hoped that it would last longer than it has. I have hit the inevitable bump in the road, and it’s upsetting. Even though I have been here before, and much worse, and dealt with it, I’m frustrated and a little bit heart-broken non the less. I don’t want to have joint pain, I don’t need the worry of stiffness, or the seemingly endless pull of chronic fatigue. I don’t want to have to compromise and miss out on things, I don’t want to be here again. But I am…

This time though I feel more prepared, I know what it’s like, I have strategies that have worked in the past that I can implement. I have a great rheumatologist who is treating this flare aggressively so that I can get back to that state where I felt good, as soon as possible. So that I can get back to diving, so that I can attend class and feel like I’m actually concentrating on what’s being taught, rather than focusing most of my concentration on just trying to be awake and hopefully somewhat aware of whats going on. I’m going for an MRI next week to check my pelvic region, because it’s my hips and lower spine that are giving me the most trouble at the moment, and then we can reevaluate again, make more changes if necessary. I’m going to continue to fight this thing, I just wish I didn’t have to.

Taking the leap

So much in chronic illness often becomes centred around the things we cannot do anymore. We have to plan our day around it, give it a constant stream of acknowledgement, or all hell might break loose. It’s that awkward third wheel that no-one likes to talk about, but we all know is there. So for once I am going to talk about what I can do, about the leaps and bounds (literally and figuratively) that I have been lucky enough to take forward. I have joined the dive team, and have completed three weeks of training. £ weeks of proper intense training. If you had told me I would be doing this 2 months ago, hell 1 month ago, I would have laughed. But here I am , three weeks into this new adventure, and I am loving it, it makes me smile when I wake up for practice, I want to go, I’m enthusiastic, I am intrigued what new thing I might learn each time. I am keeping up, pretty well I think, and my joints on the whole seem to be happy enough to hop on for the ride. I mean there as been quite a lot of grumbling from them, but nothing I can’t manage, nothing to horrible. I actually just want to hug them and throw them a party and say look what you can do! Look how far you’ve come! I have had some bad dives, hit the water on more than one occasion, which hurts every time, don’t believe anyone who says otherwise, and I’ve still been able to get up and try again. I might have a few, well maybe a lot of bruises, but I’m willing to take them for the fun I’m having. The other thing that I love about diving is that the swim and dive team spirit and friendliness is just amazing. I like every single person on that team, and everyone looks out for each other, cheers each other on, and were all so close. It’s such a nice environment to be in, and I feel very lucky to be in it. The one thing that feels a bit odd though is how few people on the team know about my medical stuff. My coach knows and a couple of the girls on diving, but I don’t think many other people know. I am kind of torn between whether I want them to know or not. IT’s nice to have a group of people who just sees me, without the baggage, but then isn’t the baggage part of me? Also I have no idea how one brings this up, especially when you are participating in all the trainings and mostly able to do it, it seems weird to then say but oh ya I have JIA, and this is really actually something I never though I would get back to. I feel like this just turns the conversation really awkward or into a pity party. Neither of which I want. So I guess in this regard I am on the fence. Should I tell everyone, should I not? How do I tell them? ……

So far I have learnt 10 maybe 11 dives, which makes me super proud. I just want everyone to know that even though it might not seem like it now, hopefully there will be a time when you will have better control of your body. For now, know your limits, but don’t limit yourself. If there is something that you really want to do, that is important to you, go for it, it might be hard, it might not work, but it also might. Just go for it. Diving was something I thought I would never in a million years get back to doing, but I have, and the going is slow and tough, and sometimes I want to cry and quite. But then I remember how much joy it brings me, how I actually feel like I have a reason to get up early in the morning. I tell myself that I can manage tough, as long as it’s important to me, it being tough will not stop me. My joints can throw little temper tantrums all they want I’m going to do this, because who knows if I will be able to later, I don’t. So here’s to taking that leap of faith, and going for that thing that we want, no matter how hard it seems….

Catch up

So the past few months have flown by in one crazy, busy, tired blur. I left off telling you, in what seems like a life time ago,  that I had to go into the hospital to be tested for an insulinoma. after undergoing the test for it twice, due to some unfortunate errors, that happened the first time and then almost didn’t give us any results the second time, I got to cross that one off the list. No insulinoma, so why the low blood sugar readings? Well since then we have crossed off dumping syndrome and Addison’s disease, which was looking like a real possibility. There are some other things we could test for, but they are highly unlikely. So were back to square one again, and I have been advised to keep a thorough recording of my blood sugar levels for the next couple months, in the hopes of that all too elusive insight into what is going on. I have also had to help pack up a lifetime of memories and belongs, as my family moved from South Africa to London, while simultaneously getting ready for my move to university in the US. Since I’ve arrived at Wellesley my days seem to have been crammed with one thing after another; there was orientation, where the moto seemed to be, how many things can we fit into a day, starting classes and the never ending pile of work that has come with that. Add in having to meet new doctors, find new specialists, go to the million and one appointments that it takes to move your chronic illness care from one country to another, and the time has flown by. In fact there never seems to be enough time in the day to get it all done. It’s been a stressful time, a busy time (just incase you hadn’t gotten that from the hints I have been dropping like crazy), but it has been an extremely fun and happy time as well. It’s something that hasn’t been easy, in fact at times it has been damn hard, there have been many a tear shed. But despite all the crazy, I would do again in a heart beat. I am loving Wellesley, I am loving the people, who are so friendly, kind and supporting. I am loving my classes, which I am finding so interesting. I am loving the experience of learning again, after a year out. I love my professors, who have been so kind and understanding towards me, and whom are all so passionate and make their subjects come a live. I am enjoying the ballet class that I am taking for my PE credits, and am even thinking of joining the swim team. I know a bit ambitious, well maybe a lot, but I want to try. I want to see if I can do it, if my body can do it. I think it will be good for me, well that is if I can get in. I am really happy with the team of specialist that I have found at Boston Children’s hospital, and the doctors who are here on campus, and have done so much for me already. I have however had my share of frustrations, the latest being getting my prescriptions, it has been what can only be deemed one big mess, trying to get refills, although as I have never been prescribed them in the US before it’s considered a new scripted medication. Trying to figure out which doctor will be willing to prescribe what, and then what to do about some of the meds that have fallen through the cracks. Which despite being prescribed in the past, no-one seems to be taking responsibility for now. Some of it has been nothings short of infuriating, and I have used many precious hours and will most likely still have to spend more time in order to figure it all out.

So this has been your update of the good the bad and the ugly. Hopefully I will get back to posting on a more regular basis, now that I have acclimatised slightly to my new schedule.

 

Cause this is thriller

So you know I mentioned that I had an endocrinology appointment on Thursday. Well lets just say it was an interesting appointment. Thank goodness not because of the doctor, because I could not take one more awful, flippant doctor or an appointment that was a waste of time. She was so lovely, and really listened to me and took me serious. She didn’t freak out that I have like a million other things wrong with me that have to be considered and factored in.  She really considered all the options and took the time to make sure that I understood her thinking as well. It was such a breath of fresh air.

Well until the inevitable happened…

Yup you guessed it, I might be adding something else to my bandwagon of diagnoses. My little tag alongs. We talked about what might be causing my weird blood sugars, some highs, but lots of lows. She thinks it might be something called an insulinoma. An insulin what now? yup an insulinoma, an insulin secreting tumour, which is usually located in the pancreas. These tumours are benign in about 90% of people, and there are rarely more than one present. To test for this tumor I will be admitted into the high care ward in the hospital next Thursday, where I will undergo a 72 hour fast test. The golden standard test for insulinoma detection. For this I will be unable to eat until my blood sugar drops below a certain level. Then they will run a bunch of blood tests to see if I have insulin present while my blood sugar is severely low. This is because the body naturally stops secreting insulin when the blood sugar drops below a certain level, but if an insulinoma is present it will still secrete insulin which will then be detected in the blood. If this is present I will have to undergo surgery to remove it. A daunting prospect, to say the least. But lets cross that bridge if we get there. If not we will have to consider other things, such as dumping syndrome, or perhaps Addison’s disease.

So tomorrow I will be heading out to find some colouring in books to keep me calm and busy while in the hospital, and hopefully distracted from my stomach, which will most likely be loud enough for all the other patients to hear. Maybe I will get some interesting movies to watch too. Till then I will be doing what I usually do, monitoring my blood sugars at home.

Wisdom Teeth surgery

So yesterday I had all for of my Wisdom teeth removed, something that I admittedly was a bit anxious for. We got to the hospital early, got checked in and sent up to the day ward, where a nurse came and asked me all of the pre-op questions. You know the ones: name, any allergies, any illnesses, medications. She then came back with three hospital tags. One with my name on and hospital ID, one with the procedure I was having on it, and the third had my relevant medical information. When I looked at the third I had to stop myself from bursting into laughter, because of the spelling and interpretation of my answers. Some of it was fine, but then I get to my apparent irratatabile bowel syndrome and even better I had been given a new diagnosis, I’m sure the first of its kind, instead of stating that I had juvenile arthritis, the tag said jonovial arthritis. So my mum and I had a good laugh about this, and it eased the anxiety a bit, which is always a good thing.

Quite a while later I was taken up to surgery, where my anaesthetist poked around an IV for a while, but eventually gave up on the third one after what seemed like ages, but managed to get the second try in without too much trouble, although still quite a lot of jiggling to get it in place. Apparently I have very hard veins, which I haven’t heard before, and which worries me a bit, as I have heard it can happened. I also have tiny veins, which I know, but that seems to be getting a bit worse too. Hopefully it doesn’t get any worse. I have heard of so many people who have had to get ports put in because of similar things, and I never want to get to that stage.

Anyway I woke up from surgery, which the doctor told my mum went well. Only one problem, the tube that they had put up my nose and down my throat had irritated my throat muscles, causing them to feel very weak and like they were continuously closing off. I have had trouble with muscle weakness and swallowing before, and this felt similar, so we think the tube caused this to flare up a bit. So I had quite a long period of time where I was really unable to swallow much, not even my own saliva. This was a horrible experience, and a feeling that I would be happy never to experience again. Having to constantly clear your throat, spitting out blood and saliva because I couldn’t swallow it was, no fun, and not what I expected at all. So recovery took a while, about 1 1/2 hours to 2 hours, as we had to wait for my muscles to start to settle down, which they have mostly, but not completely yet. finally with some juice and ice-cream in me I could go home.

I had some trouble with stitches loosening that evening causing quite a lot of bleeding and the continued muscle weakness. thank goodness I have my mum, whose a doctor, and able to assess me when things go wrong, so I know if it’s really a problem or something that will pass.

Today I have had two nose bleeds, which I was told could happen from the tube, and some trouble with my jaw, which seems to have locked up a bit. It doesn’t want to open much more than a ringer wide (the amount of fingers you can insert into your mouth), which makes eating quite hard, but I’m hoping it’s just irritation and will pass soon. Besides that it seems to be healing fine, no infections (I had IV antibiotics yesterday and will be on oral antibiotics for ten days to try to prevent any chance of infection, especially as I have a compromised immune system), not too much tenderness, or swelling. I no longer look like a squirrel that has been trying to store enough nuts for winter in its cheeks, just some slight swelling left.

so I see my doc in a week, to see how it’s getting on. So I will update then. Tomorrow I will head off to the endocrinologist to see if we can discover why my blood sugars have been so up and down recently.

 

Light bulb moment

This past week I have been experiencing increased muscle sensitivity and weakness, especially in my lower limbs. This is something I have experienced before, once very acutely, leaving me wheelchair bound for a week. But for a couple of months now it hasn’t been too bad. Sometimes some slight muscle weakness going up and down the stairs in particular, but really nothing very note worthy. Then this week rolled around and all I wanted was to have my nice toasty warm up beanie on my legs, or a massage. So as it has been a while since it has been anywhere close to this, well muscle involvement wise, I have been wracking my brains all week trying to figure out what set it off. Did I push myself too much in hydro? Did I sleep funny? Am I flaring? Is it from this cold weather? But non of these reasons seemed right. Plausible, but my gut feeling was saying no. Then friday while counting out my colourful array of pills, I saw it. The little vial of Methotrexate. Suddenly everything fell into place, and my imaginary lightbulb dinged on. I had forgotten to do my inject, I had gone 4 days without it. No wonder I was sore. Quite frankly I was surprised I wasn’t worse. How could I have forgotten it? I guess it got forgotten in the mad rush that was the past week, along with the prescription I had forgotten and had to scramble for at the last minute. It seemed as my mom says “I had thrown the baby out with the bath water”, “dropped the ball”, you name it. I was beating myself up about it, but then I realised, I’m human it happens, it will probably happened again. Hopefully not, but probably. Having taken my injection, my muscles seemed to thankfully have settled back down. So I feel like I should make a note to self; remember your meds this week. Or make a backup plan to have everyone in my family remind me, then it’s not just my mistake to make.

Tomorrow I am going in to have my Wisdom teeth removed, so wish me luck. I am not looking forward to it, and am just hoping that it heals quickly and stays infection free.

 

That terrible T

For me since the first symptoms of my AS started showing up there has always been this terrible T looming on the horizon. And no, I don’t mean the terrible two’s. It’s the idea of travel that scares me, that gives me butterflies in my stomach and makes my blood run cold.

Travel in my mind means pain and stiffness from being trapped in a small space for way too long. It’s energy draining and has sometimes reduced me to tears, and made minutes turn into hours, even days. I no longer like long car rides, or flights. They have become things to endure, something I just have to grit my teeth and get through. They’re an ordeal.

I have however found some things that make trips easier, something’s that I try to remember to do every time, and sometimes I get it right:

1. If you are flying ask to go through the disability lane, you often have to explain why (especially when they see a seemingly healthy teenager in front of them), or have a doctor’s note handy. It’s worth it though, not to have to stand in the enormous lines, that I can’t manage joint or energy wise, and if I feel like I can, I will happily stand in the line.

2. I’m pretty sure all flights have pre boarding. Which us where they allow passengers who need assistance, extra time or a legitimate reason, to board first. If you feel you need this, and I have before when I have not been at my best (once again use don’t abuse, if I don’t need this I don’t use it), allowing me to have help and time to get settled, and avoiding the lines and jostling that happens during general boarding.

3. Make sure to pack more meds than you need for the time period, just in case. You never know what might happen. Also keep all meds, and extra (I always pack so much I think I could survive on a desert island for a while), that you will or might need with you. I also carry a doctor’s letter around with me that lists all the medications that I am on, because I carry so much that I am terrified someone will think that I’m trying to smuggle them or something, and take them away.

4. If you find those neck travel cushion thingies comfortable, which I don’t, bring that with. It might make the flight a little easier.

5. Get up and move around and stretch out those sore achy joints, as much as you can. Walk up and down the aisle in the plane, anything, just keep moving.

Is there anything else you would recommend that would help while traveling?

 

Eye see

I think that pretty much all of us know that one of the complications of autoimmune arthritis can be eye problems, such as inflammation. We have all read about, heard about someone, or are even are someone who has uveitis. Most of us go on outings to an ophthalmologist every 3 months, 6 months, or yearly if were lucky, because uveitis can sneak up on us when we don’t expect it. It often doesn’t cause symptoms, we don’t know the monster has struck until or doctor delivers the bad news.

But did you now that systemic autoimmune disease can make us susceptible to another kind of problem. Before I got it I had no idea that episcleritis even existed. Episcleritis is inflammation of the membrane covering the white (I am tired and wrote right) part of the eye. I have had it for two weeks, and would rather I had never been introduced to it in the first place.

Epsceritis can cause a reddening of the eye, eye pain and tenderness, light sensitivity and tearing of the eye. It is said that the pain from this is usually mild, but for me it has been quite painful and more than that, it has been irritating. So very very irritating. It is not very fun to have to go through your day when your eyes are painful, not at all.

Episcleritis is usually self-limiting, although once you have had it it may have a tendency to recur. However you can also use topical anti-inflammatory agents to help resolve it faster, especially if you are experiencing tenderness, and this is what my rheumatologist suggested I do.

Mine seems to finally be turning the corner, which I am thankful for, hopefully it will be gone soon and won’t recur.