Tired

I’m tired.. Tired of the million different medications I have to take. Tired of the doctors visits, the tests that never seem to end or bring any real answers. I’m tired of being sore and stiff, tired of being different, but most of all I’m tired of being tired. Tired of waking up and having no motivation to do anything, not because I don’t want to, but because I simply don’t have the energy. I’m tired of spending so much time asleep and mist of my waking hours wishing I was back in bed, only to get there and have that precious sleep be so elusive. I feel like Alice lost in wonderland unable to find my way back no matter how desperately I search, with each way I turn leading me farther away from home. I just want to be done with all of it.

At the moment I seem to be fluctuating between two mentalities. I either feel like I just need to stop everything, stop my medications, stop the millions of doctors visits, stop searching for the answers that might never be found. Or feeling anxious about any change, and wanting all my meds to stay the same because I can’t bare the thought of things getting as bad as they were.

So how have I dealt with this? By inviting in my good old friend avoidance. I’ve been putting off making doctors appointments, putting off tests, even putting off getting my refills. Last week was the first time pretty much ever that I ran out of a medication because I had just kept putting off getting the refill. But their is only so much avoidance one can do, and I think I’m reaching that point.

I just want to shed this weight that is autoimmune disease. Leave it in a corner and never look back. But it’s out of my control, like so many other things at the moment. I just have to work my way back to that place of acceptance, I just wish for once it was at the bottom of the hill rather than the top. I know I’ll get there and the view from the top will be all the better for it, as long as I keep putting one foot in front of the other.

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Here we go again

So my second semester at university started this week, and to say I was less than excited for its commencement would be a huge understatement. I didn’t want to come back, I didn’t want to go to class, I didn’t want to get thrown back into the craziness. All I felt about coming back was dread. I couldn’t really even feel that excited about seeing my friends again, even though I missed them terribly. All that kept spinning round my head was how horrible I had felt last semester, how it had sapped all the energy that I had, how I felt like I had taken some giant leaps in the wrong direction. I kept having flash backs of all the times spent crying, just wishing that I could go home, that I could leave school, leave it all behind. Until reason set in and I could push (with much difficulty and probably even more tears) aside how awful I felt, how tired I was, and how this made me just want to give up; and see exactly what I would be giving up on. I would be giving up on something that I love, because I do love to learn, leaving my friends who no matter my mood never failed to make me laugh, and giving up on my dreams.

But even the thought of how much I love the place I am at school at, how amazing everyone here is could get me to feel anything but dread and pure fear. It couldn’t get me to stop thinking about the what ifs. What if I end up in the same place I was last semester, what if I ended up in a worse place, what if, what if, what if…

This was only made worse by the fact that having that much needed winter break had made me feel so much better, almost like a completely different person. I could function again, I wasn’t constantly being dragged down by deep, soul crushing fatigue. I wasn’t sick all the time. I wasn’t perfect (I might never be) but I was so much closer to it than I had been during that semester. And all I could think of was how hard it would be to lose that feeling again, to be thrown backwards.

So when the first day of class rolled around I was not in the best of moods, but after my first class I must say I was feeling a lot better, a lot more positive and excited and maybe even happy to be back. Three days in and I’m still feeling good and am so much more positive about the whole back to school thing. I am enjoying my classes, loving my professors, and sharing endless moments of laughter with my friends. Hopefully I will continue to move through the semester in this way, hopefully things will stay good. But if I don’t I just hope I see how much I love being here, and make sure that I enjoy the experience no matter what is happening to me health wise, because it truly is a magical place.

Two years and counting

Two years ago to the day I experienced the onset of symptoms that lead to my diagnosis of Enthesitis Related Arthritis. I remember that day with a clarity that time has been unable to erase. The stabbing pain that was mistaken for appendicitis one too many times. Somehow I think I will always remember that day, will always be able to cast my mind back to it and see it exactly as it was. Who could forget the moment their life started to change? Who could forget the moment where you felt like everything had been pulled from underneath you?

But having said all that I completely forgot that today was the day, and if it hadn’t been for a comment from my friend that triggered the memory it would have completely flown by without me being any the wiser. Whereas last year was the complete opposite, I knew it was coming from a mile away. I had more of a count down for my first year anniversary f the day arthritis entered my life than I did for my birthday, which happens to be four days later. It felt like this big milestone that I had managed to survive with my little friend arthritis for a whole year. I had come out a little bit battered and bruised, but I had come out the other end. We had a cake to celebrate my one year anniversary, because it’s always better to laugh than to cry right.

I don’t think it’s a bad thing that this years anniversary almost snuck by. It means that I don’t think about arthritis all the time, that there are more important things, and rightly so. It reminds me how lucky I am, to have a relatively low amount of disease activity at this time, and while I might not be in remission, I am a hell of a lot closer to it than I was last year. Two years on and I’m still showing that I may have arthritis, but arthritis doesn’t have me.

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.

 

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.

 

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.

 

Warning, health hazard ahead

Sometimes I wonder if I should come with a big warning sign. One with flashing lights and sirens, so that people know that I am a walking hazard. But then again, I only really need this sign for myself, as I’m my own worst enemy, a walking disaster just waiting to happen, or more like constantly in progress.

Since I last posted I have managed to get myself into a couple other less than stellar situations. I have managed to most likely have torn some muscles in my right shoulder, on a kids blown up water obstacle course, and later in the week managed to crash a bike at full speed into a tree, and was lucky to walk away with only a couple lovely big bruises. I being who I am, very seldom think of my limitations and boundaries until I have pushed them way to far. Then everyone and their neighbour seems to think it their job to point this out. And although they all mean well, it annoying, and it makes me feel even worse. But in the end, which was much much later, it actually cheered me up, and made me laugh. Why? I thought you were annoyed? Well I came to the conclusion that everyone and their neighbour were just like me, they knew my limits. They knew I had done no exercise, unless walking to the kitchen to get food counts, for more than a year, and that run, jumping and climbing all over an obstacle course and going on biking trails was probably a little bit beyond me and my puny muscle mass (ok I lied, there seems to be no muscles left to be found). But like me it didn’t occur to them until after I had hurt myself, or maybe also like me they just wanted to believe I could do it, both of us just wanted to believe for a couple of hours that I was normal, and for a while I did. I didn’t even think about my arthritis, how tired I was, that my joints felt less than perfect. The minute I climbed onto that inflatable obstacle course, till the second it ended with a bang (because that’s just the way I roll) Juvenile arthritis didn’t exist, it was deleted from the play completely, finally made to watch from the side lines while someone else had fun. Just like me they were quick to warn me that maybe I shouldn’t be trying to impersonate my 13 year old self, maybe I should be a bit more careful, take things slower, build up what I can do, and hopefully some kind of muscle, slowly. They were quick to tell me that although I might feel better, my body was far from what it used to be, and I would do well to remember that. Like me the found hind sight much clearer than foresight. I was not the only one that day that had made a few mistakes, that had forgotten that I was different, should act different. I felt better in the realisation, that I had made a mistake, and the mistake was all mine, but those who were quick to tell me all that I was thinking myself, to warn me of going to fast, of over doing it, did not think of this at the beginning either, did not warn me first, encouraged me to keep going. I felt better in the realisation that I was not alone, that others had trodden here before, even tread with me, and the realisation that this was not the first time I had done this (not even close), and would not be the last. But for now serves as a reminder. For how long we will just have to wait and see.

 

Frustrated

Ugh… sorry I have been so bad at posting lately. I have had lots of ideas for posts, but just don’t seem to have gotten around to them.

I was going to write a post called oopps… Because a couple of weeks ago I let my excitement that I felt good get ahead of me, which ended badly. Ooppss.. So I was with family friends, when I was asked what I wanted to do. I knew what I wanted, I had wanted to do this for a long time, I just wasn’t sure if I should do it.  But I put those feelings aside, and decided that I was going to do, if only because I could. So that was that. This is how I ended up with C and J, eleven year old twins, skating along on roller blades. Throw in a bumpy path, some sharp down hills, and well me, and there was a recipe for disaster. In the space of about 20 minutes I managed to fall bruising (at least we think?) my coccyx, and shortly after falling and dragging my knee over some rocks, successfully gouging a nice hole in my knees. So with blood trailing down my leg, we decided to go home, clean the wound (which took ages and much scrubbing, as there was so much dirt in there that didn’t want to come out) and do something a little more tame.

Looking back maybe it wasn’t such a great idea, but I think I would still do it again. For the same reason I did it the first time. I wanted to take advantage of every ‘good’ minute I had, before I couldn’t anymore. The only thing I would change is to maybe have gone in and got stitches or steristrips applied to my wound, as my mom (a Dr) thinks that I probably should have gotten stitches. So now I will have a lovely, bigger scar, and a funny tale to tell.

But I digress. The point of this post was to talk about the frustration I am feeling, about being on the downward slope again. Yup you guessed it, my infusion seems to be wearing off, with the peak being at only five weeks. It’s frustrating that it hasn’t lasted me the full eight weeks. But even more, it’s frustrating that I don’t have the same amount of energy, that my joint pain is once again increasing along with stiffness.

After two beautiful weeks, where I felt so close to normal that it actually felt like a dream, I once again am facing the reality of my autoimmune arthritis. After being able to ride a bike, go rollerblading, only need about 10 hours sleep, I am finding it hard to adjust to once more having limitations, to having to be more selective and plan out my day. I miss the spontaneity, the freedom, and the energy that I had. Even though it was only for two weeks (and kind of for the three before them) I once more feel like I have lost something. Even though I am still much more able-bodied and energetic than I was before my infusion I feel disappointed with my current level of health. I got to have these golden two weeks, and though I tried to grasp it with both hands it has once more been tugged from me. It’s just hard to accept where I am now, knowing where I was two weeks ago. And even though just a month or two ago I would have killed to feel how I do today, it doesn’t seem enough. I had a taste of how my life used to be, and am now going through a new process of adjusting and mourning that loss, as the wound has opened up afresh.

Don’t get me wrong, I am still making sure that I enjoy every minute, that I do things that I wouldn’t have been able to do, and that I appreciate the fact that I can do them. I am still thrilled to have the amount of energy that I have, to be in a place where my pain is so much better than it was, to be able to play with my little cousins. To go out and see the sights, do things, anything. It’s just I know it could be better, I have felt better just a few short days ago, and it is hard not to be frustrated that I don’t feel that way anymore. That even though I can do so many things, there are still things that allude me.

I guess this will always be hard, no matter what position I am in, no matter how good or bad I feel. There will always be a part of me that wants more, that longs to be the person I was before. I just have to try to make the part of me that is happy, that enjoys things, that takes advantage of everything I do have, that see the good in everyday, no matter how small, just a little bigger (hopefully even more) than the part of me that wants more.