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.

Catch up

So its been a while. Ok maybe more than a while. It’s not that I haven’t had anything to say, I have, I’ve just been finding it hard to actually put my thoughts down. Part of it is because I’ve felt for months that I have been on the brink of having my diagnosis changed and that I should just wait till then to blog, because everything felt so up in the air. But it’s now months later and it hasn’t happened, and I’ve resigned myself to the fact that it probably never will.
So why post now? Well as many of you probably know today is World Arthritis Day, and in celebration of it my mom wrote a beautiful post about my families and my journey on one of the Facebook sites that we are both a part of. This post really touched me, and so I felt like I had to share it with all of you. So here it is:

Today is World Arthritis Day and I wanted to write this post to support my daughter Rebecca on this journey she is on. She texted me overnight from university in Boston where she is to remind me to wear blue today. I know she will not mind me sharing some of this with the parents on this site.
She will be 21 in January and has been aware of her SJIA for the past four years but probably has had it since childhood. She is now on Infliximab infusions amongst many other things and is being seen by the paediatric rheumatology department at Boston Children’s Hospital. She continues to have pain, joint swelling, skin reactions, autoimmune difficulties, fatigue and concentration problems. But, and this is a huge BUT, she is determined to live her life despite all of this, determined to meet her challenges head on one at a time, even as there are days I know she would rather come home and curl up on the couch forever. Recently she sustained multiple fractures of her ankle and foot from landing badly on the dive board during diving training and is only starting to understand the management for that. She continues, however, to go to class, do her work, go to her multitude of doctors appointments, is away this weekend with her brother who is also at Uni outside Boston visiting friends, and is planning to go to winter training dive camp in January. She inspires me every day with her determination and resilience and I hope that she can inspire others that this journey of growing into young adulthood with this illness is possible. I know there are many others who share this journey. It certainly is not an easy road and I would rather this was not her journey, but it is, and wherever it may take her and me and our family, we will go. And that makes all the difference for her, I think.
Wishing you all strength and care and love today and everyday.

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.

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.

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?

 

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.