Monday, 29 December 2014

Three Months Post Enbrel

I hope everyone had a great Christmas. I certainly did.

Though I've had so many new experiences in the past few months, I don't feel as if I should write about them until I address what's gone on healthwise.

 With the last rheumatologist I saw telling me I was in perfect remission and perhaps the pain was just normal muscle ache, I've been a little confused. I even began to question whether the pain I've felt is real or not. Maybe I am normal and I have a very low pain threshold.

 But with my Enbrel (which kept my joints very well under control) being discontinued, my body has steadily given more 'proof' that it is indeed not in my head. I never use to notice swelling on my joints, so I'm not sure if I ever did swell before, but I certainly swell now. My ankles are now cankles. My jaw swells a little as well- my professor once excused me from lecture because she noticed it and didn't want my jaw to suffer in class. Pain in my joints has become sharper more frequently now. I notice myself limiting movements in my shoulders, and my elbows become very stiff and painful quickly. One time I wanted to break down crying it hurt so much. Drawing with an easel has become challenging, but I have found new ways of propping my arms up. On top of all of that, I'm so much more tired.

To sum it up, I just don't feel good. I don't want to go shopping. I don't want to climb the stairs. I don't want to entertain company. I just want to lie down and sleep and be warm.

I try not to talk about this much and just suck it up. I feel bad because lately I'm often in a bad mood. It's just that when you feel like your back is a metal rod, it's hard to act pleasant. I'm guilty that I've put others in a bad mood because I've been bitter. It's hard to tell (or warn) someone that you're hurting, because we're all hurting. But honestly, I just want to scream out that I don't feel good.

Wednesday, 17 December 2014

Grown Up

It's been a little while since I last posted. Sorry about that, but I've been very busy!

My life has been non-stop since September when I went off to university. Yes, your little girl with arthritis is all grown up! Sort of. Kind of. Not really. Regardless, my life has been flipped upside down and I couldn't be happier- I'm studying at a wonderful school, surrounded by wonderful people in a wonderful city. It's wonderful. I've enjoyed the past few months very much, and am excited to return again after Christmas.

I've only just returned home for Christmas the other day, and thankfully have a few weeks before my next semester. Though I love my busy life, I need time to unwind and relax. Quite a lot has happened, lots of great things but a few other things that are not so great. One of them was my rheumatologist leaving to work at another hospital.

My new rheumatologist shred me to pieces. In only five minutes he told me I was in remission because my hips were so well controlled. He told me that whatever other pain I have is in my head. Then he did the unspeakable: He decided to stop my Enbrel. In a matter of five minutes, this man decided to destroy my life.

I've been fine for the past few weeks thankfully. Once you've begun Enbrel and had a positive response to it (like I had), you can usually retain you're current state for a few weeks before the arthritis flares again. The past two weeks I've been taking ibuprofen to control the inflammation and pain. Unfortunately, it's not ideal with my kidneys but it's the only choice I've had. Especially as my tramadol does not reduce inflammation, and I've found lately gives me awful side effects like dizziness and anxiousness.

But its really caught up to me now, six weeks Enbrel free. Everything hurts or is tender, even joints that didn't hurt so much before. I can now add in shoulders and elbows onto the list of joints that hurt. I've really lost my appetite, and I'm getting the flank pain I got when my kidneys weren't happy.

With Christmas coming, I'm trying to remain positive. Though I mainly hung out on my couch today, tomorrow I would like to clean, wrap some presents and make some cookies. I don't really want to concern anyone at the moment, so I've been quiet and haven't talked about how I really feel. Though I suppose this post ruined that effort with my mother (hi Mum), it just feels good to let it out. Here's to a better tomorrow.

Tuesday, 28 October 2014

At The Moment

I'm more than just a little confused right now. Things change very quickly, and often they are things completely out of our power.

I would like to start off that in almost every respect, life is good. And I don't mean 'good' like when someone asks you how your day went and 'good' just pops out: I mean it is good. The powerful good. My classes are amazing, my friends are fantastic, my spiritual side is on fire, and I've even lost some weight. Life is good. There is a lot of joy in my life right now and I'm enjoying the fast pace of it all. I only wish it would slow down so I could savor every single second of it.

But it's a confusing time health wise. Actually, it's been more like an emotional rollercoaster. Some things have happened that I only imagined would happen in nightmare or horror movies (Like, the spoonie kind). It's why I haven't posted lately. I just don't know what to write and tell you because frankly I don't know what to tell myself. And I'm not going to try to explain it to you until I can explain it to myself.

Even in the confusion, there are things I know for certain and I'd like to let you know them. It's that I'm doing fine right now, even with the seasons changing I'm holding up alright. I am walking more than I ever have before, and the exercise is helping. Not all the time, but I can certainly see I've gained some strength and endurance. But the most important thing is I have the support of many people right now. There are so many who have shown a great deal of caring and kindness to me when I needed it most. I don't think they know how much it really means to me that they care so much. And of course, always having my mum to talk and defend me is always a blessing.

Thursday, 25 September 2014

The Young Empathy

I've touched base upon this topic before, but I would like to again, just because I find it fascinating.

Since I was very young, I've gotten along better with people who were older than me. It wasn't until I was about fifteen that I began to get along with my peers. Regardless, I've had the ability to talk with adults and preferred the company of a more mature person than people of my age (though not always). But the one touchy topic I hate to bring up with adults, especially older adults, is my psoriatic arthritis. Believe it or not, I prefer telling other young people about it rather than older adults.

Of course, this isn't always the case, but a good portion of the times. Adults often compare me to themselves, who are beginning to wake up with an achy back or their hands aren't what they use to be. More often than I care to admit, they'll begin to compete with me to see who has it worse; I like to let them win so they feel special. Sometimes they just say I'm too young, or they assume it's not so bad because of my age. I even get brushed off because I sound like a little kid trying to sound grown up. Their reactions to my medicines are another story completely. In rare cases,  I've had adults pick on me because of the way I'd move. I've gotten a whole slew of reactions from adults, and though many are very nice, there are times I wish I didn't say anything at all. Especially because the arthritis tends to become my identity to them.

Telling people my own age has usually reared better results. Not as much when I was younger than about fifteen, but even then it usually was a better reaction than the gym teacher who told me I have a stupid run. I've gotten people who questioned or didn't believe me, but not a lot to make a difference. Most people just ask me if I'm doing okay, or even just say "wow, I didn't know that" and will ask me how bad is it or to explain. Sometimes, people even have siblings or friends with arthritis and will tell me that. Recently, people seem to really care when I tell them I'm chronically ill, especially because the times people find out are often when I'm limping or need a rest. But it's often something they don't bring up much yet don't forget- they know who I am, not my disease.

I don't know why I get the results that I do- most would think it would be the younger people who are less empathetic. But I'd like to also mention there are a lot of adults who care a lot and lots of young people who really don't care at all. I'm just mentioning am odd pattern.

Thursday, 18 September 2014

I'm Happy

There hasn't been any commotion here on the blog, or on any of my social media. Normally it's when I'm not doing well that I don't write because it's harder to concentrate and I save my spoons for what absolutely must be done. But as of the past weeks, it's actually because I'm doing very well. In fact, the past few weeks have been some of the best I've ever had.

With the start of a new school year came lots of changes, but I certainly embraced them rather than tried to keep things as they were: Change is very good, and sometimes you have to be the change you want. There have been lots of nice things that have come my way lately, which I've been very fortunate for. I'm walking and moving more than in the past, and I know I am stronger now: I've even gone out dancing a few times. Instead of feeling like a loner in a group, I feel part of a large community of friends, and there has never been a time in my life when I've felt more accepted. Even passions I've always had have grown significantly more, and so has my confidence.

To sum it up, I am happy.

But I still have arthritis and it still hurts. My joints throb in the morning and ache when I'm tired. I still can't wear nice shoes, even ballet flats, on days I'm doing a lot of walking because my feet will swell to unbelievable proportions. I still take Enbrel twice a week (much to the entertainment of my friends). I snap, crackle and pop. I'm not close to remission. But that's okay: I'm happy with where I am now. Being in remission won't fix my problems or make me happy. I did that.

Thursday, 4 September 2014


Humans are not usually a solitary species. We form pacts and herds: Sometimes our pacts are brought together by blood, and others a common interest. Some pacts intimidate and others are together because they feel intimidated. It's perfectly normal to want to be in a group and belong. However, there is nothing wrong with being alone.

It takes a strong person to stand on their own, though they may not feel strong at the time. In fact, they may not feel confident at all and long for their own group. But there is bravery in a person who walks into a new area, filled with new people for the first time. They know the opertunity that is involved with leaving their group, but that first step is walking alone.  There are many an opportunity we would miss if we hadn't been alone.

Our groups intimidate, while one who is not afraid of the idea of eating alone is not. They may find they get chances they would never have if they were in a group. People would be too afraid to speak to them, or figure they would not want to branch out when they are constantly accompanied. Being alone invites new conversations to begin. When we are alone, we may go where others normally would not. And if you hadn't been alone,  you wouldn't have  discovered the treasures that are awaiting us.

But many don't feel this way. They feel inadequate if they cannot prove to the public that they have friends, which is human nature. It's scary to walk around alone, in a world where groups can seem closed off from you. However, I ask you to take a walk by yourself. Do something alone. You may meet a new friend or discover a place your friends may never go. And even if you don't, you showed the world your confidence in standing alone.

Alone is not a bad thing if you are not lonely. Anyway, one can feel perfectly lonely in a large group.

Wednesday, 27 August 2014

Blood Donation Blues

I have to admit, I've said "Having arthritis is so stupid" in a serious conversation. It's a very frustrating thing to have. Insulting it doesn't take arthritis away but it does make you feel a little better. I think the thing that's so frustrating is that much of what happens when you have arthritis is out of your control. You really don't get much choice in things you want to do when your body isn't well, especially with a disease that isn't always well controlled.People commonly have dreams, or rather nightmares, about losing control. But it's very hard to deal with something out of your control in real life, especially the way it so intimately is involved in your world.

A few months ago my school was advertising a blood drive, and I was very excited. I had always wanted to donate blood, and my friends and I were going to give together. But being the person I am, I did my homework before the day of the blood drive. I found out that people with autoimmune diseases which are not in remission are not able to give blood, nor are people who take biologics. It makes perfect sense, but I'm still really upset that a part of me can't be used to help someone else. I've been told the only thing that matters is I wanted to help, and that counts in a world where many don't, but it's no consolation. It also makes perfect sense people with autoimmune diseases can't donate blood marrow, but you can bet your buttons I was upset at that news too.

It always seems like arthritis keeps me from the cool things I want to do- blood donations, certain roller coasters, standing for three hour studio classes, dancing like a normal person, and being able to chew gum for longer than a minute. Of course, it almost never keeps me from doing what I don't want to do! I'm physically capable of doing home work, doing errands and chores, and sitting and watching while everyone else has fun. Sometimes I enjoy myself more when I'm with adults than when I'm with people around my own age who are so filled with energy and nothing stops them from doing what they please. Except the threat of being arrested, of course. Sometimes I can't tell if it's the lack of control of my body or if it's the jealousy that is more painful.

Wednesday, 13 August 2014

The RA Lie

I've been told a lie under any circumstance is wrong, but there are times the truth is not understood. I don't encourage lying, but I understand it. That is because I lie about my diagnosis.

Rheumatoid arthritis isn't too common, but most people have at least heard it's name in passing. But compared to psoriatic arthritis, it's practically a celebrity. RA is just more commonly diagnosed, so it's more likely to hear about. In fact, many people with psoriatic arthritis will not be diagnosed or will be misdiagnosed with RA due to rheumatologists overlooking psoriasis or because you just don't have psoriasis (my case). I was said to have JIA when I was younger, until another rheumatologist distinguished it as juvenile onset psoriatic arthritis due to my family history, nail changes, and many other distinguishing symptoms. But even then, I've been told many times I could pass as having RA.

If you tell someone you have psoriatic arthritis, they look at you funny and ask what language you're speaking (Latin, actually). Sometimes they'll hear the arthritis and say "Oh, so it's like for old people?" But if you tell someone you have rheumatoid arthritis, they mostly either get it or tell you that their grandfather has that (bonus points if they tell you that you're too young for that). So, when I need to get my point across quickly (like to a security guard who asks why I have prescription pills with me, for example) I just say I have RA. I don't like to do it, but when I'm in a hurry it is a life saver. But any other time I tend to explain that it is psoriatic arthritis- I like spreading awareness.

But even when I've explained to people that my disease is like RA, but with a few differences, I still have a difficult time. They assume it's not as severe as RA ever will be, or that it's not serious. In fact, I've been told I'm very lucky it's not rheumatoid arthritis. But this is not as true- I have been told by rheumatologists that my PsA is very similar to RA in it's pattern and course. It's just I don't have the RA positive lab work, usual swelling (usual swelling, I do have swelling though) or redness. I have had nail problems, organ problems and many other fun things though. Call that unserious.

Sometimes it's easier to lie. I didn't say it's the right thing to do though, I wish I could do the right thing and be honest, but people give me such a hard time. I wish I could say "I have psoriatic arthritis" and for once have someone know what it is. I know many people won't agree with this. To be honest, I feel very guilty. But I'm also very tired of arguing that I have a valid diagnosis. I hope you understand.

Saturday, 2 August 2014

After He Left

I never liked him, and I don't think he liked me. That was fine by me. I was very quiet and an easy target. He was very loud and brash, and even at my ripe age of eleven I found him extremely obnoxious. I was glad when we didn't have classes together- it meant I could get my work done without comments that turned me red in anger and embarrassment. I was often picked on by my classmates, but he made my blood boil- somehow, he always knew just what to say or do to make me angry. One time he sprayed a pungent cologne in my face, and laughed when I scowled. Every day, I wished he would go away. I hated him, and I don't think he ever liked me.

I haven't thought about him in years, and I don't think he thought of me either. Why would we when there was no reason to? We went on to go to different schools in different towns, and we never crossed paths again. With no mutual friends- not even Facebook friends- there was no reason we would ever need to remember each other, let alone keep in touch. In fact, I was happy to put him and many others in my past when I was accepted to an amazing school in a different town. I had made a new start for myself and it made no sense to dwell on the boy who picked on me when we were little. I never had to think about him, and I'm sure he never thought about me.

I saw his picture the other day, but he probably never saw mine. He grew and became a young man with hard eyes and short hair. Still, I can only picture him as a smirking boy with floppy hair. I flipped through the 'student biographies' book my class made when I was ten years old. Next to his name, he said he wanted to design exotic cars. Mine said I wanted to be a doctor. My, how things have changed. I never thought about him until his very abrupt death this year. Even though I haven't seen him in years, his passing still made me upset. Every now and again he slips into my mind, and I wonder why he left. But that doesn't matter much anymore as there is no turning back the clock, so I think about the times he picked on me because he loved the way I got mad- it was funny to see me turn red. And I finally laugh, after all these years.

Saturday, 26 July 2014

When I Lost My Voice

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it.

It was in January that an academic society I belong to began preparing to induct several new members. My society leader approached me, and asked me to speak at our ceremony. I was very apprehensive- though it wasn't a long speech, it would be said in front of many of my fellow peers. But I accepted anyway. I practiced for a very long time, and at rehearsals I was made to repeat and correct myself despite no one else being guided as much. I didn't pay much attention to anyone else's speeches, because I was too busy preparing myself for mine.

On the night of the induction ceremony, everyone was dressed primly and properly, and donned ceremonial robes and shawls (I know, it sounds like a cult). Once the ceremony began, I waited for my turn to speak. Once it was my moment, I stood straight and tall. I looked at the audience, took my time and spoke loud. I even tried to sound confident. After I had finished, I realised I did a good job and that I could speak if I had confidence in myself. Additionally, I listened to the speeches of my peers: many stumbled, stuttered, rushed and blushed (hey, that rhymed!). Maybe it wasn't just me.

I was approached by several people afterward and congratulated on a speech well spoken. I beamed. But my favourite thing I heard was, "Elizabeth, you have a beautiful voice: I wish I would hear it more." After being told my voice was ugly when I was young and then convincing myself of it as I grew older, it Was exactly what I needed to break my silence.

Polite silence is a way of life. I'm only just beginning to get my voice back, though I relapse back into  being quiet sometimes. There are lots of times I feel humiliated because I talked more than I should have. I apologise quite a lot for talking. But I realise that the most powerful thing a person has is their voice, and taking it away leaves one with very little.

Saturday, 12 July 2014

Dear Jenni

Dear Jenni,

I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me.

Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying medicines that controlled the disease and not just the pain. I've gotten all the scans I've needed, had surgical consults and more. You deserve just the same quality of care and attention.

I'm not particularly sure of what you should do, to be completely honest. Perhaps waiting for a new rheumatologist is the only thing you can do for right now. But it doesn't feel like it should be left at that- it is too passive a route. That is exactly why I share my reaction. Normally I'm pretty private about some things, but my anger for your lack of care will not be: This needs to be shared. There needs to be attention called to this problem. I hope by sharing this, more can be informed about this problem with healthcare that affects so many others as well.

Don't stop trying.

Sunday, 29 June 2014

Roller Rules

A good portion of my year so far has been spent at amusement parks. I go so often that I have already paid off my annual pass to my favourite one. I thought it might be a nice idea to share some amusement park wisdom as the summer has begun.

Roller coasters affect people different. I can go on rides with large hills and loops- actually those are one of my favourite kind. Somehow the forces don't bother my neck or back, but they do for others. Don't do anything you don't feel comfortable with, but you do have to try things to know.

Rides that go backwards, especially upside down, will put a lot of pressure on your neck and back. I don't recommend them if you have any type of problems with your neck, back or shoulders. You would be surprised how much force puts pressure on you as you go backwards whilst upside down: I was very afraid I would get a neck flare right after I rode my first and last backwards and upside down coaster.

Be wary of rides that have no neck support, as your head can be jolted. For example, I went on a coaster with no next support that was wilder than expected. There were times my head was forced down and I could not hold it straight, and at least twice it got jolted up violently. I heard weird cracking each time. I don't go on that ride anymore incase I break my neck. However this applies to no other rides. Again, use your own judgement on rides.

Go during less crowded days, which in most cases is any day other than Saturday, Sunday or bank holidays. That way you can take your time and queues will not be as long, so you are not exerting too much energy at once. Take breaks, even when you feel good. I recommend leaving the park for lunch so you have time to relax quietly.

Wear proper shoes. If you have heel pain, wear heel cups in your shoes to cushion the impact of walking. Rent a wheelchair if you need it, and do not be ashamed of using it. You have the right to sit when you are not feeling well and you have the right to enjoy the park. Everyone can mind their own business. I use wheelchairs in certain amusement parks and on certain days and I have just as much fun, if not more because I don't have to tire myself to keep up with everyone else.

You don't have to use all your spoons to have fun. All you really need is good company, good food and a camera. Just the environment is uplifting.  I've more fun having an ice cream and people watching than being miserable waiting for a ride.

Tuesday, 17 June 2014

Becoming Ill

Recently I was asked (by the lovely Ms. Rainbow) if since I got arthritis at a young age, did I have a transition period of getting sick or did I always accept?

In all honesty, it was a very long, ongoing transition. When I was very little, I wasn't 'normal' like other kids were: I tired very quickly, my leg dragged, I was very stiff and I always remembered being achy. But I didn't know that wasn't normal until I was eight years old. At eight years, I had what I still call the 'worst flare of my life.' I could barely move and was in hospital for about a week and a half (I'm still a little fuzzy about what went on at that point). I had an extremely high fever and severe hip pain, and all my scans showed inflamed fluid on my joint. Unfortunately 'the greatest children's hospital in the nation' sent me home and said it was viral arthritis, and never followed up. Afterward, my joint pain was much worse in my hips- in fact, they were the only joints that bothered me.

  After that flare, I felt like a fake when I didn't feel good or didn't want to play because I didn't know what was wrong. I was seen by more doctors at 'the greatest childrens hospital in the nation,' and was told it was growing pains and would go away if I ran and played like other kids, and when I was ten years old I was given a diagnosis of tendonitis. Even though I felt sick, I wasn't 'allowed' to be sick and rest and be excused for things because I didn't have a name for it. I felt so confused. I use to Google my symptoms to try and find out what was wrong, and even I knew at age ten that tendonitis wasn't what was going on. I also began to get worse- now my knees and ankles weren't feeling so good.

I was twelve when a miracle occurred. After a gym class that left me in tears from pain and humiliation from a gym teacher who made me run and pointed out my swollen, knocked knees to the class, I was refered to another hospital. I saw an orthopaedic specialist who ran a battery of tests and I was immediately sent to a rheumatologist. It was amazing how for the first time in my life, someone other than my mum understood I was in pain. After I began seeing the rheumatologist, my life  flipped. The medications I began taking made me violently ill. I may not have felt good all of the time before, but I became sick almost all the time. By the summer, I had lost all my friends because I was no longer able to keep up with them. All of a sudden, I would never be considered healthy. Though I was glad I was being treated, nothing in my life was the same.

It was the beginning of the next school year I was diagnosed as JIA and started methotrexate. I did not feel well on methotrexate by any means, and I lived in a foggy, cold and lonely world. The diagnosis confirmed what we had thought for years, but now it was real. I felt hopeless. It was that year I would come to terms with my diagnosis, but it did take a few months. Feeling horrible and knowing JIA is chronic, I couldn't imagine I would have to live miserably for all my life. But changing rheumatologists made it easier: I was taken off of methotrexate and began to make friends with other chronically ill kids. I felt better. He also correctly identified my arthritis: Juvenile psoriatic arthritis.

My transition was miserable because I felt powerless in what happened next. I did not get to control what happened next, but I also didn't get a say in my medicine or how it affected me. My diagnosis went on for a very long time, and it took a year to really feel okay again. Even though I never felt right and from age eight on I knew I was sick, I only found the truth when I was about twelve years old: I was chronically ill and there is no magic cure. But I made it. Years later, my spine and shoulders are affected, My kidneys aren't so great, my fingers turn blue in cold, and a whole slew of other I problems. I've coped. It's hard when it's first happening, but you make it work.

Friday, 13 June 2014

"If You Have Arthritis, How Can You Walk?"

"If you actually have arthritis, doesn't it hurt to walk?"

That was how the conversation went. I didn't know it at the time, but I had opened up a Pandora's box.

Someone ( I'm not disclosing this persons name or relation to me) had just asked me about having arthritis: They heard me mentioning it to someone else. I'm usually honest about my diagnosis, so I told them I live with arthritis caused by the immune system. They asked how I deal with it, so I told them I take immunosuppressants and try to stay active. This person is very pushy and nosy, and I suspect a bit overdramatic. They continued to question me, as if making me prove something. They said, "so the pain isn't all the time?" And I said, "No, it's constant."

I was asked, "but if you actually have arthritis, doesn't it hurt to walk?" And I said, "Yes."

"Then why...?"

"Because either I walk or I live in a wheelchair."

This person questioned my own disease. Just because I'm not in a wheelchair. This person became increasingly aggravated and suspicious as they pressed me for questions. I ended it promptly after them insisting if I had arthritis, I shouldn't be able to walk.

I wish it ended there. I repeatedly had to see this person. Although they never pressed me for more questions, something never seemed quite right. Like when this person informed the group I was speaking with that they weren't feeling very good and then proceeded to eat a handful of vitamins and drink a glass of those immune system boosters. Staring right at me.  They then santized their hands ten times in five minutes. And when someone had a headache, that person suggested it may be a migraine caused by gluten intolerance and continued to inform everyone that gluten is responsible for a lot of 'immune system disabilities.' And stared at me the entire time they explained.

Another time, they really made a statement. This person explained they had a headache to whoever would listen. When this person had to sit in the same room as me, they proceeded to pull a surgical mask and wore it. When they handled some papers from me, they wore rubber gloves. Seriously?

I've had gym teachers who relentlessly tore me down for my deformities, inability to preform and poor performance in gentle activities. I've had teachers insist I would grow up to become addicted to drugs because I required constant injections and looked horrible (from Methotrexate). I've been given dirty looks for needed a wheelchair when I look fine. There have been numerous times people have picked on me for being chronically ill. But nothing that has made me laugh so much.

Even though I am well aware this person is picking on me, I really can't help but laugh. Someone here might even say this person is very concerned for my well being, but you know when someone is helping and when someone is just being silly. They're being silly and it's made them very made that I've never looked insulted.

Sometimes I wonder if this is really ignorance, or just a severe case of jealousy. From a person well over twice my age.

Tuesday, 3 June 2014

What They Never Mention

What doctors always forget to say to you when you get a diagnosis is, "congratulations, it's a chronic illness." They never mention how ongoing many diseases really are and just focus on the short term. It's often up to you to learn about what's going on inside of you, and trust me when I tell you Google is a scary place to go, especially at one am when you're panicked about what's happening. A word of advice: Google will stop being your friend if you are A)panicked, B) tired, or C) a horrible combination of both.

 A lot of people don't realise that they have chronic illnesses, and become frustrated when they are not cured overnight or at least have sufficent symptom relief in the matter of a few weeks. When it comes to months of little to no improvement or even further progression, people can become agitated, anxious and downright depressed. It's a hard pill to swallow, which is why many people with chronic illnesses go through the five stages of grief (some never reaching the last stage or going through the same two or three stages repeatedly).

Believe it or not, people who have been chronically ill for years- even those chronically ill for most of their life- still get frustrated, just as much as they did in the beginning when they did not improve dramatically with treatments. They too get angry and depressed. Doctors continually dismiss them, despite having a proper diagnosis, just as they would dismiss a person with no diagnosis who's symptoms don't seem "too bad." They are still stressed by doctor appointments, tests and new medicines. And they are tired too.

I'm not going to lie to you and say it always gets easier. Sometimes it does get easier: There's always the possibility of treatments that control symptoms very well and even remission. For others, it doesn't. But in the mean time it's hard. It's so hard that it might make you question why you keep trying. Chronically ill people seem prone to having bad luck as well. That's all it is: You didn't do anything to cause anything. You did nothing wrong. You've got to keep trying and fighting against that bad luck.

Life isn't fair. It's really not for anyone, even though it can certainly seem that life is having a go at you and no one else. It's not going to be easy, I promise you that. I will bet my right hand that you will consider giving up at least once. It's not something to be ashamed of either. Trust me when I tell you that I've considered giving everything up, that a life spent on my couch isn't so bad. But then I remember how much work I've put into life, and how much farther I can go if I keep at it. So I sigh, give my pillow one last hug and try my best. It doesn't really matter if life goes to plan anyway, it just matters if you give it a good try.

Wednesday, 28 May 2014

Bed View

Some nights I go to bed and promise myself that in the morning I am going to get up and go out and get things done. But I often break that promise. There are mornings on my days off that I do nothing but lie in bed. It feels very lazy, and sometimes I feel guilty. But it's also very peaceful. I can hear the day starting all around me. I feel my joints gently throb. Pain isn't always something that makes you suffer. In fact, it can be the only thing that lets you know you are alive when the world is cold and numb. From my bed I can look out the window and see the world go by. It doesn't go by without me, though it can feel it. I'm still a part of it, but today I choice to watch peacefully as I rest so later I can join outside.

People often call me a homebody. However, this is far from true: I really love to be out and about. There are times I dread coming home, wishing I had time for one last adventure. But it would be no fair to my body to overwork it. I need to rest. People don't realise I'm exhausted a good amount of the time and drag, but it doesn't mean I want to stay home. I want to be out experiencing things. Even just watching the world.

I am a lot of the adjectives people use to describe me. I am lazy- after a long day, all I want to do is lie down. It's my want that wins, not my knowledge that I am capable of going on to do more. I am a homebody; if you're home enough, that is what you become. Your desires do not change that. I am very quiet, though I feel like I never shut up: I let people forget me, and even when I call for them I never raise my voice to get their attention. But I know one thing: I am not disconnected. I am just as part of the world when I watch from bed. Taking care of yourself is not isolating yourself. It's being active in your life.

Wednesday, 21 May 2014

Where I've Been

Where have I been?

Right here! I've never left, I've just been less active. I haven't participated in social media nearly as much or even written comments on some of my favourite blogs. If you emailed me, I still responded like usual. But I'm not up for communication at the moment. I haven't for a long time.

I'm not tired of all the lovely people on and off the internet. In fact, I miss them a lot. I just haven't felt up to writing. I haven't even been texting with my best friends as often. Even to type is tiring and all I want to do is lie down and stare at the screen. But this isn't even bringing my energy back. I force myself to take a long walk at least once a week (but usually more) but it hasn't helped (nor made it worse so I continue to get out for a minute). I really enjoy being out too, I wander through stores and bring home coffee for my mum and I. But afterward, I need to relax and I end up lying down for the rest of the day and sometimes go to bed early. I always mean to write but I'm just so tired and any energy I do have for writing goes to school work.

Being chronically ill is so much more isolating than people would imagine. Not only do you feel so different from other people who seem to have no end to their energy, sometimes you're just too tired to communicate with the people who get it. Though electronics do make it easier, it can still be a struggle. Pain and fatigue can affect your mind and thinking clearly some days can be hard, forget writing. The physical process of typing can be a lot to handle.

So, please forgive my absence. I just don't feel good right now. I don't know when I'll feel better, either. It's so hard to tell what's going on right now: Arthritis is kicking my butt, my kidneys are kicking my butt and even my GI system is kicking my butt at the moment.

Friday, 9 May 2014

An Open Letter to Med Students

To Students Pursuing Medicine (be it nursing, doctoring or otherwise),

I think the choice to go into this field is great- you must really have dedication and care for others. That's wonderful, and I say that very lovingly, not sarcastically. I'm even a little envious of you because I fancied the idea of becoming a medical professional when I was younger and still have a medical sweet tooth- I love the reality shows set in hospitals. I know you can do it, and you will be great in what you pursue. But, as a professional patient, I ask for you to learn some things and try others.

I want you to try and put yourself in your patient's shoes. Think of how you would react in certain situations- and no, you would probably not be as calm as you imagine. I know it's easier to separate yourself from your patients, but do this at least to understand the way your patient reacts to your words. There are tears, held back sorrow and anger, frustration, guilt, confusion and feeling lost, and you should not make your patient worse by not understanding that some things are hard to take, even things that wouldn't seem it. Know that your patient with a chronic illness, especially those newly diagnosed, is going to mourn their health and is going to go through the stages of grief. It's perfectly normal, do not make it worse by telling them it's not a big deal or it could be worse. They know that. They can't help being upset that their life has changed.

Please educate yourself on autoimmune diseases. Not any particular one, but generally. Learn how they work; you'd be surprised how many times I've ever explained how my disease worked to doctors and nurses. Autoimmune diseases go undiagnosed for years and the results are catastrophic in some cases. Please believe your patients symptoms and don't dismiss them: Fight for them! Surprisingly, patients  need you! Don't hate the patient that brings up a disease that fits their symptoms. I promise you, they are probably not a hypochondriac, they are probably just tired of their symptoms and of those symptoms going neglected. It's hard to be sick when no one believes you. Fight for your patient, you may be the one who can give her back a normal life when she's suffering in silence.

I highly recommend you become involved in a patient advocacy group. Your patients will love it, and will have a higher respect for you. They will know that you 'get it.' You will gain insight and information you would never imagine: You may learn ways of better helping your patient. You will learn what your patient really goes through: That they're a normal person who is constantly battling their disease and trying to live their life. You will find priceless things that medical journals will never tell you.

Thank you for deciding to pursue medicine- we need caring people like you in this field. It's going to be hard but worth it. You don't have to take my advice if you don't want to, but I want you to know that many chronic illness patients feel neglected, abused and lied to by the doctors and nurses who work with them due to the invisible but degrading nature of their illness. If you take anything from this, please take that you need to care for your patients- don't let them suffer. Please fight for them.

Best of luck,

The Girl With Arthritis

Thursday, 24 April 2014

Fast Forward Fears

I try to stay very active in the community of fellow autoimmune disease owners. I'm actually part of a group on Facebook (My Immune System Hates Me) for young people who own autoimmune diseases. I really love being a part of it: Even though I'm not very active on it, I've really gotten to know everyone and I really care about them. My heart breaks for them, too. As just the other day, my heart was torn in two for one. Though I won't say who for privacy reasons, this person talked about graduating university just the previous year with hopes of going on to a bright future. However, she is now struggling a lot with her health and it's so hard for her to get by day to day.

It's amazing how fast your life can flip. Scratch that, it's scary how fast your life can flip. Especially when you're only so young. Life doesn't get to be put on pause until you can feel better- time keeps ticking and dreams collect dust. I think it's funny how our brains aren't truly developed until age 25, but we are forced to make very important decisions that affect the direction of our life as early as age 12! Around the time you turn 16, all of a sudden your life is out on fast forward- and from then on, there's no going back. I admit it's a very exciting time but it's so exhausting. Fatigue has cost me a fair few opportunities I will never get again. It cost me grades that could've been perfect but are now above average (I know, big difference). It cost me friends and holidays and lots of sleep as I worry what's going to happen next.

But as much as it breaks my heart to hear about what others have lost and as much as it stresses me to think of all the potiental loss I may face in the future, I find comfort in knowing someone else understands. It sounds horrible, but it's true. There is comfort in not being alone in your situation, it your fears and in your hopes. I don't have advice for this situation- it seems to be a no win most of the time. Sometimes to make it you're going to burn yourself out. I don't encourage you to, I'm just saying it happens. Sometimes you're not going to make it. Don't feel that's the end of everything: When you've hit your lowest point the only way you can go is up. But know that in whatever happens, there is someone who cares, who's heart breaks at your lows and who rejoices in your highs.

Saturday, 19 April 2014

My Absence of Sitting

I haven't been very active on the blog lately, even my Twitter and Facebook have suffered. I'm terribly sorry about that: I've been here the whole time, I just haven't been posting. I've even been writing, but I just haven't posted. I've felt immensely guilty about not posting either, but as of recently  I've found myself busy and wrapped up in other things. Like sleeping. Or eating.

The past week I was invited to work on a project that has required me to sit on the floor and paint. I like the painting part but not so much sitting on the floor to do it. I'm very much like a baby because I can't sit up by myself so I've had to hold myself with one arm or sit in a way that kills my legs. I've been coming home very sore. But even through that, I've been taking very long walks afterward. I know how important it is that I keep moving, so after a day of sitting uncomfortably a walk seems as though it would be smart. Unfortunately after I get back home I crash. It's been a miracle that I haven't been falling asleep before five o'clock.

So, please excuse my absence! I can't even promise I'll be back soon- I really need time to recover and even a little time away from the blog.

Sunday, 6 April 2014

Psoriasis is so Easy to Treat

Lately, I've spent a lot of time reading articles online. One of my favourite places is All Women Stalk: I like the beauty and hair advice, and I really like the name. Last night I was on All Women Stalk and one article was very interesting to me: 7 Skin Problems That Are So Easy to Treat. I expected this article would talk about things like dry skin, but I was proved very wrong. One of the problems that are so easy to treat is psoriasis. Psoriasis?! Easy to treat?! Over my dead body it's easy to treat.

The article states that the number six easiest skin problem to treat is psoriasis. This is what the website says:

"You might not realize how common psoriasis is. In fact, it’s one of the most common skin conditions that affect adults. It produces red, scaly, dry patches of skin and can appear most anywhere on the body. There are several types of psoriasis, and some require nothing more than taking a prescription pill. As long as you remember to take it every day, there’s really no simpler way to treat a skin condition."

No, it's not. It's not easy to treat at all. Psoriasis is an autoimmune condition in which T cells cause the skin to become irritated and inflamed and skin cells to go through their cycle that usually takes 30 days in only 3, causing the redness and scales. Yes, it can be controlled with prescription pills- often low dose chemo and other immunosuppressants. It is not the simple matter of a pill though, these medications are very serious and side effects can be unpleasant. Though, other medications can be used: if creams and pills don't work, there are things called biologics you can take. They're injections, often given by the person themselves anywhere from every two weeks to twice a week. In addition to skin psoriasis, one can also get nail psoriasis or psoriatic arthritis, a debilitating, autoimmune arthritis. 

This article infuriates me. Not because of how inaccurate it is. Not because I have psoriatic arthritis and nails. But because my beautiful mum has psoriasis. It covers a good portion of her body, and there are many articles of clothing she will not wear because it would show the affected skin. Do you know how painful it is? I can only imagine what it is for her, because it is so painful to watch. I hate to watch her suffer, often silently. To read an article about how easy it is to clear psoriasis is so upsetting. If it's so easy, why is my mum still suffering? 

Let's not take this. These conditions, especially autoimmune, are not easy to treat as many insist they are. This is just one example of a society that calls autoimmune arthritis, lupus, fibromyalgia, irritable bowel disease, Lyme disease and hundreds of other diseases easy to treat, or even fake. Please, let's tell All Women Stalk how horrible this article is. I've listed many ways to get in touch with them, if you would please help. If you cannot do that, please share this article. There are many people with psoriaisis. Let's give this often silent disease a voice.

The All Women Stalk Twitter: @AllWomenStalk

The All Women Stalk Facebook:

Don't ignore this issue. Please share.

Thursday, 3 April 2014

Shoe Rules

I love shoes. Shoes can really dress up or down and outfit, just the way you want! Having arthritis, or just chronic pain, can make finding good shoes really difficult. It's taken years, but I've finally found ways of coping. Years of wearing ugly, clunky shoes that are so comfortable or pretty shoes that hurt like no tomorrow have gave way to finding great shoes. It just takes a little effort, but here are my shoe rules.

1. If you are able to, invest in your work and dress shoes. This is most important for women, as the two types of shoes can often be one of the same. Heels may not be possible for everyone, but some women actually can: They just need a very thick, small heel and a well made shoe. Consider saving for a quality pair of shoes that will last, give your feet support and most importantly give you confidence.

2. Get proper shoe equipment. Get arches if your doctor recommends them, especially if your feet are flat. You don't need to spend a fortune on getting them custom made: I've found them in regular stores and some are just as good as the custom made ones. In fact, my doctor thought mine were custom made! In reality, I bought them for nearly nothing.

3. If your heels ache, get heel cups. They're a bit like little trampolines for your feet. I highly recommend them- my heels ache a great deal, and throb when I wake up. But lately with my heel cups, they've been much better. They too can be found cheaply, in fact you probably could find directions on how to make your own.

4. Almost Any shoe can be made comfy if you have the right equipment. I can wear ballet flats by putting arch supports and heel cups in them. It may be difficult in some shoes, but I've found sticking down arches and cups with double sided tape helps a tremendous amount. You can also stick cushions inside too.

5. If you have nice shoes that has no supports or way of keeping supports in them, try to plan when you want to wear them. Try and make it on a good day, but I know that's not predictable. Make sure you take your pain medicines, and if you have a lot of walking to do (like if you take the train), bring a spare pair to change into. Having a spare (preferably light pair) will also be good incase you flare during the day and need comfy shoes.

6. Arches hurt to break in, but you don't have to completely suffer. Stick small pads on them, it makes it a little more bare able! Don't try and wear them the entire day at first: try for two hours a day, and try longer as it goes by. My arches hurt so much for the first week, but it was well worth it: any shoe I put on with my arches are like slippers.

7. Break in shoes quicker! Dip them in water, put on a pair or two of thick socks and then the wet shoes. Use a hair dryer to dry your shoes as you wear them!

Wednesday, 26 March 2014

Fight for Your Life

Whenever I'm introduced to a new doctor or present doctors with new, odd symptoms, my mum likes to tell them "she's going to give you a run for your money." That's completely accurate. Most times, doctors can't figure out what's wrong with me- at least, not for the first two visits. I think the only time I ever got a diagnosis in one doctors appointment was for a classic case of bronchitis (that I walked around with for a month or so because I just didn't want to see another doctor). And I know I'm not alone in that either.

Lots of people I know walk around for years not knowing what's wrong with them. I went about a decade. I know a lot of GPs are not able or don't know how to properly treat many autoimmune and other chronic illnesses, but I can't understand why patients aren't refered to specialists faster. It's cruel to make someone suffer and ignore it. I also hate when specialists dismiss patients quickly. Maybe it's not a clear cut diagnosis or the worst disease or damage they've ever seen, but it is for that person. And doctors don't get that.

We are often called pushy patients- even seen as drug addicts because we have to push to get adequate pain management. But do they realise what would happen if we didn't push? We wouldn't be helped. We would often suffer. They don't understand that often we've been pushed away, so we learn to fight. And not just for some pills or time. We fight for our lives.

You are an individual with the right to proper medical treatment. It might not be easy, but make sure you get proper care. Push for it. Insist on it. Do what you need to. No one has the right to make you suffer through something that can be helped. Fight for your rights. Fight for your life.

Monday, 24 March 2014

Blue Fingers from Standing

Lately I've had incidents of my fingernails and toenails turning blue. It's not as if the skin was blue, which would be terrifying, but it was still a little concerning. I brought it up with my rheumatologist the other day and showed him numerous pictures I took of it. After he examined my fingers and toes and felt how cold they are, he gave me a diagnosis: The blue was caused by me standing or sitting up. The treatment? Lie down.

Best treatment ever.

I took this with a grain of salt. Lie down every time? I can't wait to lie down in class, on the train, randomly in stores. It's literally a dream come true.

Doctors really don't get it. They don't listen. Even the best of the best can be dismissive sometimes. I really like my rheumatologist and I've been with him for years, but sometimes he's just a pain in the butt. Did not listen to me explain that it happens when I can't warm my fingers or toes? It's obvious I probably just have a very mild circulation problem- I swear sometimes I don't know why I bother with a doctor: My knowledge and Google are much better and less of a hassle.

I don't know what it's like to be an actual doctor, I just imagine I'm one when I watch House or Doc Martin. I know doctors deal with loads of paperwork and whatnot, but still... It's a bit silly to give your patient a half thought of diagnosis just to explain something. I can see the little man behind the curtain- Doctors aren't superior beings. They're humans who don't contain the answers for everything. If they don't know something, I think it's better when they admit it rather than giving a stupid diagnosis or claiming nothing is wrong at all.

I'm not asking for cures. I'm not asking for a life changing diagnosis- anything but another one of those. I'm not even asking to know why everything happens. All I ask is honesty. It's okay with me that you can't cure me. It's okay that you don't know how I got to this point in my health. It's even okay that you don't have a name for something going on. Just understand and believe me. Let me be able to trust you. Try to help me in anyway you can.

Just don't brush me off.

Wednesday, 19 March 2014

Adults Treat Me Different

I find it funny how adults preach to children that they should treat those with disabilities no differently from others, however adults tend to do the opposite. When I tell my peers about being chronically ill, I don't usually get treated differently after. It does happen, and sometimes it's with extra consideration. It's really nice. Adults, on the other hand, usually treat me differently from others. Occasionally it's just to make sure I'm doing okay, which is always appreciated. Other times it's as if they don't believe me. But more often than not, it's just different from other kids. Adults are often surprised I lead a more normal life than they expect. I would like to set the record straight:

People with chronic illnesses are normal people. 

I'm not a hypochondriac. I'm not a saint. I'm not looking for attention. I'm a teenager with a chronic illness. I'm a girl who loves her friends. I think homework is the bane of existence. There's a boy I can't get off my mind. I love getting dressed up. Food is my first love. My room is covered in posters and magazine clippings and is filled with music. I have stuffed animals all over my bed. Sleep is my favourite hobby. I watch romantic comedies and wish for a Joseph Gordon Levitt for myself. I pride myself on seeing all the latest Disney movies. And if I didn't have to grow up, I don't think I would.

I'm only a kid. I might have an 'adult' illness, but that doesn't make me any older.

Saturday, 15 March 2014

Things I Wish They Told Me

I was about eleven when I began being treated for juvenile arthritis. As clever as I was at eleven, I didn't understand everything. Sometimes I wish doctors would sit there and tell you more, or at least give you a little pamphlet called "All the Things I Don't Explain." Even if I was beginning treatment and diagnosis now, I wouldn't have known these things. And I admit I'm still learning.

1. We're Not Treating Symptoms. We're Treating a Disease.

Treating the symptoms doesn't treat the disease, but treating the disease does treat symptoms. It may not mean your symptoms are relieved for a long time, but it could mean that damage is prevented. For example, if your doctor says it could take six months for a medicine to take full effect it means that you're body will be completely using the drug against the disease. It doesn't mean your symptoms will completely disappear by that point. I really wish they explained that.

2. This disease is progressive.

They didn't mention that. But it was probably for the better. Until it progressed.

3. You are going to grieve.

It's a very common thing to go through after diagnosis. The five stages of grief apply to dealing with diagnosis of a chronic illness. You may not go through all of them, and some people never get past some stages like anger or denial. But you have a good chance of finding yourself grieving. And that's perfectly fine.

4. Arthritis may affect you in ways you didn't expect it to.

Lots of people, even those who have it, don't realise how arthritis can affect more than just joints. I didn't know in the beginning that my fatigue was part of it, or that I would get kidney problems from the inflammation. Not that people newly diagnosed should expect to be affected in such ways, but it's good to know what to watch out for.

5. It's okay that it changed your life.

You might not like the way it changed things, but it's okay That it did change. A chronic illness is going to change things, even if you don't think it should or want it to. And don't let anyone convince you that you should let arthritis change your life, since it's "just arthritis." It's not just arthritis.

Wednesday, 12 March 2014

Disgusting Patient Care

 I go to school with a wide variety of characters. And no, it's not because they're art students. Actually, at least half time time I go to classes with -gasp- other people. Oh the horror! Yes, there are kids studying for every type of profession. I've noticed the most popular is nursing. In fact, I would bet money on saying that for every ten students I've met, at least two are going to be nurses. Nursing has been a very popular career choice for a long time, and many think it's a stable, rewarding job. And I agree with that: Sometimes I wish I had what it takes to nurse. But I know I couldn't, so I moved on. I just wish others would too.

The other day I sat in class, quietly reviewing for an exam when I heard person loudly talking about their job. I found this person is studying to be a nurse, and is working as a nursing assistant in a dementia and Alzheimer's ward. What I also found was that I'm horrified of what's happening there. This person described locking herself and the patients in a small sitting room for hours on end. Then they turn on the television and wait for their shift to be  done. They talked of being annoyed and getting a headache from an elderly lady who would not stop crying, not wanting to be locked up. They laughed as they talked of an elderly gentleman who is only able to say a few words. They talked  of leaving a patient asleep in a completely inappropriate area, where they could get hurt. This person talked of their patients like they were worthless things, not people in need of care. Someone suggested they bring a book to read to the patients, and the person dismissed it saying "I don't care enough to."

I wish I could tell you this is a horrible joke, but I can't.

I could go on about the disrespect of patients and the lack of care, but their words speak loud enough. I could ask "what if they were their grandparents?" But I'm not. I will say I cried thinking that's what a loved family member of mine could be enduring in her care, but thankfully I know she's not. And I will say we need to stop hurting people. Not patients: People.

PS. I swear I'm not a troll. This is an actual person talking about their actual nursing job.

Monday, 10 March 2014

Blue Nails

If you know me, you know that I'm always cold. I've always wondered if this was the arthritis or if it  means I have a cold heart. Regardless, you tend to see me bundled up at all times. Sometimes I won't even take my coat off when I get  home at night. The cold instantly makes my body stiffer and more painful: if I'm out shopping, I'll just walking around looking so I don't have to move too much. And let's not even  go into how cold my hands are at all times (eve in the summer). But recently, I've had the oddest thing happen to me: My fingernails are going blue.

The first time this happened I text my mum a picture. She instantly became frightened and called my rheumatologist. He wasn't in, but the nurse wrote it down in my charts. I see him next week anyway.  I've been taking pictures of it to show my doctor as well.

Everyone in my family who has been told is obviously a little startled and then goes on to suggest it's just the cold. Obviously: When you have arthritis, any little thing that bothers you is "because of the cold." But they care. Except for the one who shrugged saying his fingers get cold too.

Being the professional sick person I am, the first thing that popped into my head is Raynaud's. But this would probably be the slightest case of it ever seen. But it's the only (not scary) theory I have at the moment. Isn't it weird how with autoimmune anything, the minute you get in a comfortable spot something else pops up? Just like, "hey, that flare is over? Great, but let's spice it up!"

Oh well. It could be much worse! I'm just going to be sitting on my hands, carrying hand Warmers and wearing fingerless gloves more often. What fun!

Friday, 7 March 2014

Arthritis Life Q&A

Hi guys! Lately I've gotten a lot of questions about having arthritis and I thought I would share them with you. Enjoy!

"What did you do to get arthritis?"

What did you do to get brown eyes or red hair? You got a specific set of genes. Science seems to point that autoimmune arthritis and other diseases are hereditary and passed on through genes and come out due to triggers like being ill or an injury.

"Why can't you just get a hip replacement?"

I don't need one! Yet. My joints are damaged, but the damage isn't what causes all the pain: it's the inflammation caused by my immune system. Getting steal hips and knees won't stop the pain.

"Did you know apples are good for the immune system?"

Next question.

"Why are you so tired all the time?"

Alas, it's a symptom of autoimmune arthritis. Not only doesn't hurt to move, I'm too tired to move anyway!

"I heard arthritis can be caused by not flossing enough. Do you floss?"


"How do you continue on with all that pain?"

Let's be honest: Do I have much of a choice in that? I guess I do. It's for the reasons anyone else goes on: I've got a dream and I'm following it.

"Have you ever lost friends due to having arthritis?"

Yes. The last time was a year ago, thankfully. Sometimes people can't handle chronic illness, even if they're not the one who has it. Oh well, someone who leaves you because you're dealing with something isn't worth your time or sadness.

 "Did you know cherry juice helps-"

We're not doing this today.

"What's brain fog?"

... I'm sorry, can you repeat the question? I forgot.

""Why do you takes uh dangerous medicines when ibuprofen is so much safer?"

That doesn't prevent horrible damage for. Being done to my body. You may not understand- and that's okay until you see what a person goes through with flaring arthritis-  but it's very worth it. For some, it's either taking a medicine or not having a quality of life.

"Have you tried diets?"

Somewhat. I have a lifestyle where it's hard to follow very strict diets, like gluten free or something. But I'm happy how I live now-  I eat healthy enough, walk for exercise and my medicines help a lot.

Tuesday, 4 March 2014

Heel Cups

Heel pain is very common with psoriatic arthritis. I'm not am exception to that. Some mornings I wake up feeling as if I slammed my heels into the pavement for six hours straight. In fact, sometimes I imagine that cutting off my heel would feel better that living with it. Walking isn't always pleasent either: It can feel like walking on spikes. Recently my rheumatologist gave me a miracle:

Heel Cups.

They're just like they sound: Little foam wedges that cup and cushion your heels. They're like shock absorbers for your feet. And gosh, it's like a piece of heaven in your shoes. I've worn them in two pairs of shoes and so far they've fit both well. That's surprising considering I already have enough 'equipment' in my shoes as it.

Anyhow, heel pain or not I highly recommend looking into getting a pair. They do absorb the impact of walking (or rather, limping) and make it easier on your feet and other joints. Look for foam ones that are thick: They offer the most support and comfort, compared to gel ones that can squish and make your feet slide around. Anything for happy feet, of course!

Friday, 28 February 2014

Practical Dreams

Once upon a time, we were all five year old children. Not at once- that would be a lot of kids. But none the less, at some point in time we were all five years old. We sat on the floor surrounded by a teacher who told us something wonderful: That we could do anything we want to be when we grow up. She read us stories about people doing incredible things. We were encouraged to follow our hearts and reach for the moon, because even if we missed it we would still land among the stars. And we were still told this as we got older. But I can't remember when they first said, "Follow your dreams- as long as they're practical." I don't remember who taught us to question, "Is that actually a real job?" And every time I hear "You don't have to love what you do: You'll love your pay," my stomach does a little flip.

This post is not about careers. This is about why we are told not to dream big.

Humans push the boundaries of 'normal' every day. It's amazing what we've accomplished as a race, even in the last few years. But still, people seem a bit trapped inside a box. When we dream of doing something great, which we all do, many will dismiss it as a nice thought and move on to 'realistic' dreams (whatever that is) or even to no dream at all. I think it's sad people keep their ultimate wish in the back of their head, only to watch a lifetime go by without trying to reach for it. Maybe they don't have inspiration to work towards achieving it, or it could be peer pressure that keeps someone from pursuing it. But I think that it's a monster in our heads who screams "You can't! You never will!" A monster who was once a baby, unable to speak, but quickly learned and grew louder as we were told "No, you can't." It's a monster who screams over the little dreamer in our head who gives us constant inspiration and encouragement, but who can only whisper.

Dreams are different for everyone. Sometimes it's to see the world, learn to paint hyper realistically, to record an entire album of music or even to be able to walk without pain. Even when it is grey and bleak outside, we have to keep holding onto our dreams and working towards them. We can't dismiss them; after all, what if achieving it is what brings sunlight into your life? I think we'd regret never trying more than we would ever regret trying and not reaching it. Life is too short for 'realistic' and 'practical' dreams, whatever the heck that means. Act like the person you want to be, scheme for the future, set realistic goals and keep your dreams close to your heart.

Wednesday, 26 February 2014

Love for Friends

"I love you" doesn't mean "just for now."

It doesn't mean "until someone else I like shows up." It doesn't mean "until this is no longer fun." And it doesn't mean "until times get tough."

There have been lots of people in my life. A lot have come and lots have gone. They taught me a lot, especially about love. Everyone has 'fake' friends. I've had my fair share of them, and I expect to have more in my lifetime. Fake friends aren't necessarily bad either. Sure, you can't count on them for anything but when they're bored it's always fun to be invited for coffee. It's just the toxic ones you need to avoid: the ones that make you feel bad or talk about you behind your back. But even the toxic ones can help: they make you treasure the real friends you have even more.

Real friends aren't the oldest friends we have. They aren't the ones who you talk to the most often. They aren't always unrelated to us. And they aren't even the ones you have most in common with. Real friends are the ones who share a mutual love for. It may be unspoken but it's still there. And it can feel odd to talk about love when you mean your friends. I don't know why but people think it's odd for others to feel love towards their friends, instead of only their family and romantic partner. But the way I see it is, is that a family doesn't need to be related just as a home doesn't need to be a house. If we looked at the world like that, people I have no blood relation with would be my siblings and I wouldn't know some of the people I am related to.

Love can be unspoken but is shown. It is present when someone stays with you during the worst of times: They might be silent, but they never leave. They're the ones who accompany you to MRIs just for the heck of it. They die laughing at your morning cocktail of drugs. They are the ones you have conversations with for hours on end with that never get boring but often get weird. They are the ones who pick on you for being sick when you're okay but are the most concerned when you actually are sick. They're the ones who, like you, are on a first name basis with your rheumatologist. And they're the ones who immediately offer you a kidney when you tell them something is wrong with yours.

Real friends aren't just the people you met a school or work. They can be anyone. Parents. Siblings. Cousins. Even 'Internet friends.' And, of course, romantic partners. Friends are the people who we love and who love us back. Even if you would never say it outloud.

Sunday, 23 February 2014

To Four Years, and Many More

It's so rare to find a great, cute pair of shoes when you have chronic pain. So let's celebrate the great, cute ones we do have.

Dear Shoes,

When I first bought you, I never knew we would become so close. Something about you caught my eye: Was it the black suede that called to me? I fell in love and knew you would be coming home with me. And now, four years into the future, we're still together. Through think and then, we stayed together. We made it.

I remember the first weeks when we we're getting to know each other. We fought a little: You would pinch and I would insist on wearing you anyway. There were times were life consisted only of swollen feet and ankles. But we got though that. The struggle was well worth it: The support you have given me has been priceless. You protect my weakest spots like ankles and have given me tremendous comfort.

Shoes, you have been there through everything. You are perfectly casual, but always clean up well and are perfectly dressy as well. You've been there for interviews and charity events, for parties and dinners. Do you remember my first date? You supported me the whole time. I don't know how I could've done it without you. You've been there for post-dancing recovery and for new orthotic arches. You have helped me stand tall through the years and brought me so far.

Four years? It's flown! Most shoes don't last this long, but not you: You still support me and stand strong. We still have lots of future events: Here's to another four years.


Tuesday, 18 February 2014

How Elizabeth is Doing Now

Last year, I did an eight week course. It was an art class almost every Saturday morning, from mid October to December. I really did enjoy the class: It was a lot of fun! I made friends within the class and got a lot of good artistic advice, and even more confidence in my work. I don't regret doing the class what so ever.

My body, on the other hand, hated it very much. I tend to be busy over the week (and by 'busy,' I mean going to school, coming home and doing homework in bed). But those weeks were extremely busy for me: Things started popping up from nowhere! It was a bit more than I could handle. There was actually a point when I became so stressed out that accidentally spilling coffee on some paperwork I was supposed to be sending out sent me into a hysterical screaming fit.

Mentally, I was breaking down. But the physical toll was much more intense. I lost my Saturdays to recover from school since I was out of the house by six thirty in the morning (just like every day). The class was three hours of standing to paint or draw. And since the train schedule is a bit different on Saturday, there was lots of waiting around. Sundays were reserved for sleeping only. There was no going outside or doing any chores. In fact, if I had a bed pan I don't think I would have ever gotten out. There was a lot more pain, and even new joints experiencing pain. My shoulders began to ache from the world I carried on my back. I was burning out.

The end of the class marked the beginning of the winter holidays. I got two weeks to attempt to recover. But to be completely honest, I'm not anywhere close to where I once was. I may not have been energetic before my Saturday courses began, but I wasn't fighting to keep my eyes open in school either. I was making a lot of progress before the class, and my rheumatologist and I decided to try going three months without an appointment. When I saw him in January, I wasn't nearly as run down but it was enough to send off little alarms in his head. I was sent for labs that required 80% of my blood and I'll be seeing him again shortly to discuss where we will go from here. I know many things are being questioned at the moment medically, and I will share them once I know. I just don't want to tell you my own suspicious and come off as a hypochondriac. Which I'm not.

I'm just an unpaid medical investigator.

I like to pretend I'm Wonder Woman. I love coming across as being able to save the world and still be home in time for supper. As open as I am about being chronically ill, there's this part of me that still fights it. I come up with the dumbest reasons why I can't do something or don't want to go somewhere. There's over a hundred excuses I've given for taking public transportation, walking or riding with friends instead of just driving my own car. Honestly, It's just that driving is too much to handle. I've told people I don't work after school because my parents insist I focus on my school work only. And though that is actually true, it's because I can't handle it. I volunteer once a week for three hours, and it takes me a few days to recover from that: How am I going to work everyday after school?

I admit it: I'm not a normal young person. A lot would call me lazy. And that's okay.: They don't know what it's like to live like this. I resist peer pressure say no to doing drugs to become 'cool.' I resist peer pressure and say no to burning myself out just to be 'normal.'

Don't do more than you can handle. It might seem worth it at the time, but you may regret it later. Don't be mad with yourself if you find you can't handle it anymore. You're strong for going as long as you could.
Don't destroy yourself with work that you feel you're drowning in. It's not worth it.
Do take care of yourself. You're worth it. You're beautiful.

Saturday, 15 February 2014

Driving Me Painful

Driving is probably the most common form of transportation. Most people learn when they're a teenager, and learning is a rite of passage for many young people. And though it's considered to be a very easy, common thing to do, a few don't agree one hundred per cent.

Think about the physical act of driving. Your legs are stretched out in front of you and you have to keep control of the pressure you have on them to control the pedals. Your arms are stretched out in front of you to steer. And let's not forget turning your head to look around. And if you're backing up, let's not forget the painful twisting and turning there! It can be really intense and take a lot out of you!

Driving for some is really painful. Some will say you're very lazy if you don't want to drive, or if you never were able to learn. I beg to differ. It's very hard to force yourself to do something that causes pain. It can also make you feel very unsafe: we know pain can be extremely distracting and it can distract you from concentrating on the road. Also, you can feel very restricted by stiffness and it may be hard to look around. People don't understand the struggles some of us have with this 'simple task.'

My tips for driving?

  • Make your seat as comfortable as you possibly can. This may mean having a small pillow for your back or even one for your neck. 
  • Take breaks as often as you need them. There is no reason your safety and health should not come first.
  • Large steering wheel covers can help you hold the wheel comfortably. 
  •  Insider driving with someone who doesn't mind switching off if you need a break.
  • Don't force yourself to drive if you are really not comfortable or very tired. Nothing is worth putting you under a lot of stress and sucking away your energy.
Driving isn't a favourite past time of mine. Usually I take advantage of public transportation and anyone's offers to drive.  It doesn't mean I can't if I have to. It's that I don't like how unsafe it feels when I can't concentrate on the road ahead because all I can think about how awful my joints feel. Some call it laziness. I call it smart.

Wednesday, 12 February 2014

Fight or Live

 "Do you fight this disease or do you live with it?"

I was recently presented with this question. And to be quite honest, I gave no answer. I had to think about it for a while before I could answer it. 

Chronic illnesses are very complicated by nature. When you're diagnosed with an illness that is serious and are told that there are only treatments to try to control it, it's devastating. That diagnosis can make your life flip, even if the symptoms already seemed to turn the world upside down. It can be confusing and there are even times you might not know what's really going on. But if there is anything I remember clearly from the time of my diagnosis, it was discussing treatment options that can making living with arthritis easier. There was little talk of fighting, so to speak.

I think a lot of the time we use the terms "living with," "deal with" or "try to control" to describe what treatment for chronic illnesses are for. Very few flirt with the idea of saying "to fight." It's not purposeful, it's just what people get use to saying. They may even think it implies the same: It's the case of thinking one thing but saying something else. But some people are very clear when they say "live with," and others "fight." Living with is very passive, fighting is very aggressive. To think, those are just words. 

In reality, I think most of us live at a happy medium in the idea of fighting and living with. We treat ourselves in many ways to control chronic illness- be it through medicines, surgery, diets, exercise or combinations of those. We fight through treatments. But we live too. We live because the chronic implies that if we stopped life for illness, it would stop for a very long time. There is no choice in whether life goes on, but it is our choice to continue to live. It's a choice we must take advantage of when we are able.

There's no fight or live. It's both.

Sunday, 9 February 2014

Teen Discrimination

Children: Some people love them, others don't. Teenagers: Mostly everyone hates them. Maybe that's an overstatement, but that's how I usually feel. I know, I know: We're annoying. We're these disproportioned, pimply creatures that expect to be treated as adults, act like children and have unpredictable moods. I can't really blame you for rolling your eyes every time you see a rowdy group of teenagers walk by. But, I was wondering if we could stop the 'all teenagers are annoying and rude' stereotype? Please?

I don't know if this is a world wide phenomenon or if it's just me, but some adults treat me very... Well, not with the respect I treat them with. For example, I was waiting to pay for something at a store. There were two women in front of me. The cashier greeted the Both of them very kindly. Then it was my turn: the cashier wouldn't look at me and didn't even speak to tell me my total, even though I greeted her. One time I was out right ignored by a cashier and not served. Another time I got kicked out of a candle store when I was looking for a specific candle for my mother's birthday. A clerk followed me around the store and finally just asked me to leave. Unless I'm in a shop or other place that is specifically for young people or is run by one, one of the above scenarios tend to be the case. It's odd how sometimes I'm just buying milk or something for dinner and people look at me like I'm causing a problem and drawing attention. And no, I don't look the type to cause problems, though looks aren't a justified reason to judge.

I know a lot of teenagers notice this and they just accept it. But I don't. I refuse to accept any of this on the grounds that I am tired of prejudice in all forms.

Wednesday, 5 February 2014

Don't Order Lemon

 Autoimmune diseases. They're pretty self explanatory: the immune system attacks the body and causes problems. It's pretty obvious that the best way to help ourselves is to try and care for the immune system. A lot of time this can mean taking immunosuppressant medicines. But even when one isn't taking those, it's still important to prevent getting sick since that can make you flare.

Lots of people will suggest things you can do to not become sick. My rheumatologist's absolute favourite is getting the flu jab (no, I've still yet to get it). Others will recommend bathing in hand sanitiser, avoiding contact with people completely and living in your house until spring. However, I have one tip that will absolutely guarantee that you won't get sick:

Don't order lemon.

When you're out to eat and you ask for a glass of water,  make sure to ask for no lemon. Lemon wedges are notorious for being one of the bacteria filled things you can find in a restaurant. This is usually since they are kept in an unrefrigerated container all day and touched by many different people repeatedly. And no, the citrus does not keep bacteria at bay. If you have a suppressed immune system or cannot risk being sick whatsoever (or both), don't bother with the lemon. Ask for another glass of water or request a dish not come with lemon. Trust me.

The other night I went to a restaurant and had asked for a glass of water. It had a lemon in it, which I didn't realise it would come with. I knew it was likely to be dirty but I was too shy to ask for a new glass of water without lemon. So I drank it anyway, reassuring myself it wouldn't get me sick. The next morning I woke up sick. Right now I'm laid up with a fever, cough and pounding head.

Do as I say, not as I do. Learn from my mistakes, my children.

Monday, 3 February 2014

The American Recall Center

Recently I was contacted by The American Recall Center and was asked if I would like to promote their new website. I said I'd love to. The America Recall Center provides Americans with information about things such  as joint replacements and medicines that have been recalled and are unsafe. Even if you don't live in America or have ever had treatments there, you might be interested by their health blog. I hope by sharing this website, I may benefit you:  I would never share anything with you that I didn't believe in. 

Joint implants and prescription drugs allow millions of Americans to live their lives to the fullest. The field of medical research has rapidly expanded over the past decade, and new drugs and medical devices are released to the public every day. Unfortunately the psychiatrists, surgeons, and medical specialists that prescribe these treatments frequently have overbooked schedules. This often means they may not have the time to answer all the questions a patient may have regarding their medical treatment.
At The American Recall Center, we believe in the old saying that knowledge is power. Our goal is to offer patients the information they need to make the best decisions concerning their health. By providing this information in a highly accessible format, patients can quickly learn everything they need. We can help you decide if a certain prescription or surgery may be appropriate for your medical needs, provide you with the information you need as you undergo treatment, and answer any questions you may have afterwards.
Your safety is also our concern and we can provide you with current information regarding product recalls. Last year, the Food and Drug Administration (FDA) recalled over forty-five drugs that had caused serious illness, irreversible organ damage, or death to prescribed patients. Forty medical device recalls were also issued during this time. 
One high-profile case occurred last November when a hip replacement recall was conducted on a product that afflicted thousands of patients with intense lower extremity pain. This recall allowed many of these patients to quickly undergo surgery to remove the faulty product before it could cause further damage and replace it with a safer alternative. Staying up to date on prescription and medical device safety alerts could make you aware of potential risks associated with your treatment plan and necessary changes that should be made.

The American Recall Center can keep you up to date on this information through our Patient Safety Alerts program, which will notify you when an FDA recall has been issued on a prescription drug or medical device you use. Simply select the drug or medical device categories of interest and you will receive an email when the FDA issues a relevant public safety concern. This way, you can be assured that you have the latest information concerning the treatment plans of you and your loved ones.