Time for a change

Remicade was the first arthritis medication that really worked for me. I mean the others helped somewhat, but they never seemed to make that real difference that I was looking for. With everything else I was slightly better, but nowhere near functional. On Remicade I’ve been able to attend college, and even compete as a college athlete. It has never put me in remission, but it’s brought me really close. I’ve been on Remicade for just over three years. It seems crazy that it’s been so long as I still remember vividly the day that I had my first infusion. But lately Remicade hasn’t been working as well for me. Over those three and a half years I’ve gone from infusions even eight weeks, to every six weeks, and now every four. Yet even going ever 4 weeks I’ve had some pretty big flare ups. That coupled with the inconvenience of having to go into Boston Childrens Hospital so frequently, as well as a number of odd side effects I have (hyperinsulinism being one of them), has led my rheumatologist and I to decide that it’s time for a change.

This week I will be leaving my faithful friend Remicade behind and starting Humira. Its a change that will hopefully be for the best, but as with any major change I’m anxious. Sure Remicade wasn’t working as well for me as it used to, but what if Humira is even less effective? My rheumatologist has reassured me that she thinks Humira will work great for me, after all it’s mechanism of action isn’t that different from Remicade. But still I have this niggling worry that she might be wrong, that I’ll switch to Humira and be worse off. After all Humira doesn’t work for everyone, including people who respond to Remicade. But then again maybe I’m worried over nothing. Maybe Humira will be wonderful. Maybe I’ll even finally go into remission. Maybe… maybe.. maybe. I guess only time will tell.

Giving Thanks

With a chronic illness it’s so easy to focus on all the things that are wrong, the things that are hard and disappointing. It’s easy to let these things take up more space than they are worth. I know I often spend too much time worrying about the newest thing that seems to be wrong, like the return of a facial rash, or a joint that has just swelled up. But this Thanksgiving while I was sitting surrounded by friends and loved ones, I realised how much, both in my personal life and medically, I have to be thankful for.

I am truly thankful for all the amazing doctors and specialists who I have been lucky to find here in Boston. Boston Children’s hospital is truly a special place, one in which I feel listened too more often than not. I am thankful that it feels like they respect my part as an active participant in my healthcare. I am so thankful that my doctors here have never stopped thinking, questioning and  looking for answers. Even when it takes way more than one try to find them.

I am thankful that I have access to medications, tests and treatments, and that I have never had to worry about financing them.

I am thankful that although I may not be in remission, I am in a place where my arthritis does not hinder what I want to do, or what I am able to achieve. A stark contrast to where I was a couple of years ago.

I am thankful that despite all the worry that the multiple fractures, which I sustained to my right ankle and foot a couple of months ago, would form non-unions, they seem to be healing nicely. Allowing me hopefully to partake in some of what’s left of the swim and dive season.

I am thankful for friends who are willing to drive me to appointments and for those who come to many of my appointments to provide entertainment and moral support. I don’t think you could ever understand just how much it means to me, and how much your presence there helps. For everyone who listens to me when things get tough, who understand that they don’t have to solve the problem (because lets face it they can’t) but know that just being there is more than enough.

All this and more I am thankful for.

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.

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.

Letting go

I think I posted here a while ago that I had joined the dive team, because I had decided that while I was in a good place, joint wise, I should take advantage, and do the things that I had missed while my autoimmune arthritis was over active. One of the things that I had missed so much was exercise, all and any kind, but having done gymnastics for years, and diving for a little while, the dive team just seemed to call out to me. Beckoning me to come closer, to go for it, and take the leap (yes, pun intended).

But lately I’ve been struggling. I’ve had a hard time with my immune system due to all the immunosuppressive medications that I am on. I would say I’ve had between 8-10 viruses within the last couple of months. Which at first was alright, well, except the fact that I was sick all the time, but it felt like more of a nuisance than a big problem. But lately the viruses have been getting worse, sticking around longer, and worst of all triggering my autoimmune issues. I’ve been exhausted, my joints have been flaring on and off, and then on top of that I’ve still had to deal with having a virus. This has led to lots of missed classes, work that seems to endlessly need to be put off to tomorrow because I can’t manage to get it done, and missed dive practices. Every time I’ve felt better and up to trying to get back into the water again, the next virus seems to come along and knock me back off my feet. I’ve been trying really hard not to let this stop me from diving, from doing what I want to do, what I feel I should be able to do. I’ve been showing up to practices, and stretching and working out on the bikes when I can’t dive, and pushing myself to get back into the water as soon as I can, which perhaps has not been the best answer. But I wanted to keep diving so badly. Diving has made me feel really happy and fulfilled, it’s given me a reason to get up every morning and the team is so loving and supportive.

But at some point somethings got to give, at some point you have to let go. Let go… oh boy is it hard to let go. There have been many, many tears shed. Lots of anger, sadness, denial, and even feelings of failure in this decision. But at the end of the day it needed to be made, diving right now just isn’t the right thing for me, and no matter how many ways I look at it, I can’t change it. I just can’t, not with all the wishing in the world. So my coach and I have decided that it would be a good idea to take the rest of the year off diving, and return to it in my second year, if I think I feel up to it. In the mean time I’m going to work on getting this beast of an autoimmune disease back into control, and slowly building up my fitness and stamina, with the goal of returning to the team next year. I’m coming to accept this decision, and starting, piece by tiny piece, to let go.

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…

 

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.

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.