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.

 

Light bulb moment

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

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

 

Want to swop bowels?

Tablet filled with 24 radio-active markers, for a bowl transit study

If you don’t want to read about my bowel and it’s movements stop reading here. You have been warned

Today I had an appointment with my gastroenterologist, a doctor that I haven’t seen since I had my scopes done last year. Not because I haven’t needed too, but because I have just had so many other doctors visits that I have had to go to, and this wasn’t a priority. Also because in some respects I’m not sure that they can help me, or no how to, and because he didn’t really have anything I could take or implement into my life, the last time I went. So I sucked it up and went on with life. But recently my stomach has been irritating me more. I have pain, cramps, sore stomaches, that come and go as they please. I live in a an almost constant state of either diarrhoea or constipation, I am almost never in the middle. But lately my system seems to have completely slowed down. I am lucky if I have a bowl movement once a week, it’s more like once every two weeks, sometimes even more. My muscles don’t seem to work properly so I have to use other muscles and various contortions to have a bowl movement at all. My stomach is just not right, and I figured I was due for another look.

My gastro has decided to do a couple of things about this. Firstly a stool sample, as it is a good way to find out if there is any inflammation in the bowl, and whether it is IBD, without having another scope done now. Secondly I am having a bowl transit study done. This is where you have to swallow a tablet that contains 24 radiopaque markers in it. This will break up in my stomach releasing the markers. Five days later I will have an x-ray taken of my abdomen, from which they will be able to see where the markers are. If I have normal bowl transit 80% of the markers (19 or more) should have been expelled. Other wise they will be able to see where they are, if they are spread out, or collected in my colon, or at a certain point in my bowl (which could show an obstruction), and make judgements from there about what is happening.

If the stool sample comes back with no inflammatory markers I will start taking medications to improve my bowl movements, something I am not looking forward to. As the movicol takes disgusting and makes me feel like I will throw up. So we shall just have to see how that goes, if that’s the direction I we end up in.

Will tell you what comes of it when I know..

 

 

 

 

 

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….

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.

Silver linings

With any chronic disease I think it is very easy to get sucked into the swamp. That all-consuming place where things aren’t going right, when we’re sore and tired and getting up each more seems like a chore. We’ve all been there. That little known place where we are not sure if things will ever be right or ‘normal’ again. Today though I want to talk about some of the good things that have been happening, the positive changes, that at one point seemed more like a faint possibility, something I would have loved to have, but wasn’t counting on.

Over the past week I saw a cardiologist, because my heart is weird. Like the rest of me, it wants so badly to be out of the box. I have had pretty much persistent tachycardia, since diagnosis of Enthesitis related arthritis (part of the ankylosing spondylitis family). My heart has felt off, beat so hard I think that it might be a hammer, more than a heart. It has been painful, but mainly it’s been fast. This cardiologist was lovely, and unlike most people who thought I should just deal with it, he realised that if it was interrupting my daily life, we should do something about it. So after a normal echo, we decided that a 48 hour holter, should be repeated (I had one about a year ago). A holter is like and ECG (a heart monitor) that you keep on, in my case for 48hours. Here comes the good part. My holter does show that my heart beats fast, it was better than the last one I had. So the cardiologist thinks this shows a downward trend, it’s going back to normal. Yippeee… I think this is due to the Remicade, which seems to be making headway against this disease. Double yippee…

We did however decide to still trial me on heart meds, to see if this makes a significant difference, else we will leave it for now.

This week I also had cortisone injections into my jaw, my first ever joint injections. It was sore, although netter than I thought it would be .It was nerve-racking. It felt odd, especially the left side, which felt like a big cylinder was being knocked through layers and finally pierced into the joint. Most likely because this is the worse of the two, and most likely has some synovial thickening and a smaller joint space. The right side though just seemed to glide in, and although still sore, wasn’t as bad. All of this was done without any anaesthetic, as Dr. P says that there is a nerve that is close to the jaw, which can make your face droopy, and he wants to know whether it has happened due to the injection or the anaesthetic. Makes sense, and I was actually happy that this meant less needles poking me, and local anaesthetic has never really worked for me anyway.

How is this good, you might ask? Well, since the injections my jaw has been so much better. I opens better, it clicks and grinds less, it’s not sore all the time. I don’t have a constant headache anymore, and when I have one it’s less intensive. also my neck seems to feel a bit better too. Which makes me really glad that I made the decision to have the joints injected.

Last, but certainly not least, I have managed to wean off of my opiod patches (durogesic patches, similar to morphine), and now am only taking Tramadol as needed. This is so great. After almost a year of having pain that was needed to be controlled by such strong pain meds, I am free of them for now. It is such a blessing to be more in control of my pain, and on top of this disease. It’s still hard, but a slight weight has been lifted from my shoulders, and I am going to enjoy every minute of it.

Adding Up

I have always been an overachiever. Always wanted to be the best in anything I do, be it sports, music, or school. I was determined to be the best me I could be, and yes at times, well probably a wee bit more than that, it has driven me to be competitive. I think that this autoimmune disease has taught me that I should still strive to be the best me I can be, but that it doesn’t mean that I have to be the best or the brightest, I just have to be me. But that’s a post for another day. I told you all this because it seems that my body has taken up this pursuit. It is trying to be an overachiever. This is not a competition, that I think anyone wants to win, and that’s coming from me, and the extreme A-type person that I am.

It seems that my body is trying to collect as many weird and wacky, and oh so fun, conditions.

Over the past month, I have managed to add two more diagnosis to my collection. About 4 weeks ago I went to an maxillo-facial and oral surgeon, Dr P, because my jaw has been bugging me a lot. It kind of feels like what I would image it would be like to have an elephant sit on your face. He did a panoramic x-ray of my whole mouth and jaw, and concluded that I have disk dysfunction. So when I open my mouth my jaw slides to the right, and then straightens out. He also said I was clenching my jaw, and this was putting strain on the joint and the muscles around this. He also saw that my wisdom teeth are impacted. He wasn’t sure though if my autoimmune arthritis had a role to play in this as well. So off to get a CT scan I went. Low and behold, it probably is affecting my jaw as well (although Dr P still won’t completely commit to it, as there is no erosion of the joint, yet). The space between the joints in my jaw is enlarged, suggesting that there is synovitis, and it also shows the disk disease. All of this lead to the diagnosis of TMD (tempora-mandibular disease).

So I have been made a bite plate, which is supposed to help with the clenching, was put on muscle relaxants for two weeks, and told to eat a soft diet (i.e. avoid hard or chewy foods). I was also sent to physical therapist, well a special kind of physical therapist called craniosacral therapy. Which much to my surprise was not just physio for my joint, but gentle manipulation of muscles and tissue, throughout my whole body. This craniosacral therapy is a form of alternative medicine, which some people think doesn’t work. But I’m really wiling to try anything, as long as it won’t do any harm, which it won’t. I have had about 5 sessions and I must say I do feel a bit better, and my muscles are certainly less tense, so maybe it is doing something.

I will also be having my wisdom teeth taken out at some point, and will most likely have joint injections into my jaw at the same time.

The second thing that I have added to my array of diagnosis, is endometriosis, which like arthritis I have most likely had since I was little, about 11 or 12. I have had all the symptoms, just really thought it happened to everyone and was to shy to say anything. After reading about this on someones blog though, I realised that what she was talking about, was the same thing that I had experienced. So I decided to tell my mum, a doctor, who suggested going to the gynaecologist. Both my mum and the gynae came up with this diagnosis without me telling them what I thought it was, just based on symptoms alone.

So for those of you who don’t know what endo is here is the definition By Mayo Clinic:

Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus grows outside your uterus (endometrial implant)…

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped… Surrounding tissue can become irritated, eventually developing scar tissue and adhesions..

Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop”

To get an official diagnosis of Endometriosis you have to undergo a laparoscopic surgery, as this is the only way to see the adhesions. My doctor however has decided that at this point in time we are not going to do this. As I had two surgeries last year, he doesn’t want me to have to undergo another one at this point. So as I have typical symptoms (for once) he is going on that, and will put me on a new med that is coming out in SA this month, which he thinks is the best one around at the moment. Don’t know the name but will tell you when I do.

Finally I can report that my chest CT showed no blood clots in my lungs, so O can tick that off of my worry list.

Hope everyone is having a good day