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.

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…

 

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….

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?

 

Bring on the crazy

As many of you know, sleep problems often accompany many autoimmune and chronic pain conditions. Ever since I was diagnosed I have had trouble sleeping. In regards to this it seems I have experienced everything and anything under the sun. I have had problems getting to sleep, problems staying asleep, nights where pain wakes me up, night sweats, or sometimes even when I do sleep it doesn’t feel like I’m really sleeping, more like a half asleep, dozing, kind of feeling.

So a couple of months ago I made the scary decision to go onto sleeping tablets, something I was trying to avoid like the plague. Since I have been on it I think my sleeping habits have improved and I have felt a lot more rested in general. But, and there often seems to be a but, it comes with its own set of side effects. Since I have started using stilnox, most nights it has brought the circus to town.

This med is great in terms of finally letting me get some much needed rest, but it makes me a little odd, a bit crazy. I take it usually right before bed, and then under cover of night the show begins. This drug makes me feel high/drunk/off/just an odd ball. I have had nights where I have had conversations between my hands. Moments where a song pops into my head, and I only realise seconds afterwards that I am belting out the song, not just going through it in my head. I have had dialogues with myself, had deeply insightful monologues, made funny faces at the ceiling, because I feel like I have just newly felt how it impacts my muscles, and how fun and funny it feels.  I have seen my pillows piled up next to me like a mountain, which I have then climbed with my fingers. I have made up songs, thought up whole stories in my head. Even crept across my bedroom on my tippy toes to sneak chocolate out of my cupboard (as if anyone could see me through my closed bedroom door) then ninja crawled across my bed, misjudging the length, and found my self on the floor, with a sore bottom to show for it.

This one med has made my nights hilarious. It has opened the door and invited the whole circus in. I swear you could make a comedy show out of the things it tempts my confuzzled brain into doing.

But it works, it does what it needs to do, it makes me sleep. Something that I have sorely missed. So bring on the crazy, just make sure the door is closed first….

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.