Lucy with Lupus

 Hello everyone! My name is Lucia Bustamante Vizcarra and I am an 18 year old Peruvian starting her first year as a biology undergraduate in Imperial College. When I was 13 years old, I was diagnosed with a rheumathoid condition known as Juvenile Idiopathic Arthritis or JIA. I recently got re diagnosed with Systemic Lupus Erythematosus. For years, I have struggled to understand and accept my illness, as I had to slowly learn how to adapt to the obstacles it presented in all areas of my life.  Which is why I am very excited to start this journey with you guys and share with you some advice, hacks and daily shenanigans that happen when being a teen/ young adult with arthritis.

[intj-aesthetics]

Chronically ill people “coming out of their comfort zone” aren’t toddlers trying new foods.

They are adults actively risking pain, dislocating joints, cramps, vomiting, passing out, being bed bound for weeks, knowingly worsening their own condition, because someone guilt tripped them or the situation forces them into doing something they’re not okay with.

Like, yes, you can hike out of the woods with a broken leg to find help. But chances are that you won’t enjoy it.

[lucywithlupus]

Highs & Lows

This post is hard for me to do because it really shows how life cannot be a perfect slope upwards.

In a week's time, I will be returning to university after months of recovery. Just a couple of days ago, I just felt so excited to go back: to return to my routine, to go back to my friends, to catch up in my studies…

I couldn't wait to prove to myself that, yes, I did it. I got myself to a point where I can take my life back and balance both my realities as a lupus fighter and a biology freshman.

I should be excited about this victory and many more to come, but somehow, I do not.

These days I felt different than usual. I felt worried, doubtful, and scared. I felt unhappy when doing my college lectures online when packing my stuff for the trip and even last night when I was thinking about what to write in today's blog post. It feels as if your brain was numb: insensitive, unaware of what it was doing and why.

Unsatisfied with this situation, I tried to keep myself happy and determined. I set myself many goals: to prep, my things for the trip, to finish up any lectures I missed, do some extra research, exercise, to save some time for my family and friends, to eat healthily, etc. I thought that I had a perfect master plan set up: every step important to, in theory, build a stronger version of me that would return to the UK without worries.

However, I realized, instead of getting myself out of the trap, I just buried myself deeper with higher expectations.

Going back to London means a huge change from my life here at home, and with that realization  came to a never-ending list of "what ifs": 

What if I have a pain crisis when going back? What if I cannot find a rheumatologist to follow my case? What if my friends see me differently because of the truth about my health? What if I feel lonely, lost and I cannot lift myself up? What if I go back to that moment when I was packing my bags to get to Lima, slouching in pain, defeated by my own body?

I try to keep myself focused and optimistic about my recovery, but the reality is that those bad thoughts still defeat me every so often. The good thing about chronic pain is that it takes a lot of pain to bring you down, but the downside is that the worst pain comes from your own head.

I guess it's true what they say: You are your own worst enemy. It is clear to me now: we are perfectly capable to bring ourselves down because we know our weaknesses better than anyone else, and our evil selves will not hesitate to exploit them the minute we feel insecure about our choices.

Doubt is perfectly normal: it prevents us from making choices without analyzing the possible risks. But too much can lead to some dark paths of thinking, making up painful scenarios that may never happen in the first place.

I am now well aware that my mind treasons me every so often. What I need to learn is how to ignore those voices and move on. Instead of trapping myself in a loop of doubt, I am learning to trust my own thoughts, and what I have learned the last few months about my strength, my worth and my ability to get better.

I recall something very important that my psychiatrist said once: we cannot know if bad or good things will happen, and it is not up to us to say bad things will never happen. Bad things will happen at some point in our lives., thus we do not need to convince ourselves that "everything will be alright", because that is not true.

Instead, we need to convince ourselves that we will be prepared to receive it all and cope with it:  bad things, good things, and all of those everyday experiences in our way. 

Life with or without chronic pain has its highs and lows. It's just part of its charm. If there were no pain and sadness, happiness would not have meaning, and vice-versa. I am glad that I went through all this pain and still manage to see the good in life. Nevertheless, I am also thankful to know what true defeat is:

Defeat is not when life brings you down, it is when you bring yourself down.

Fighting your inner demons and surrounding yourself with love, kindness, and self-respect is the only way to lift yourself up, and hopefully, see the bright side of even the darkest moments.

That is all that I have for today, my friends. It might feel odd to read such an angsty post from me, your bubbly lupus fighter. However, it was important for me to share my weakest moments with honesty, because I know that many others, diagnosed or not, feel the same way. I wish you the best this week and keep fighting!

Take care of yourselves! Love you! Bye!

[lucywithlupus]

Happy days

Everyone knows life brings unexpected things to the table, but no one is really ready to accept it when they actually arrive. Many strange things have happened to me in the last couple of months: starting university and being diagnosed were two major turns in my path of life. I was baffled at first, questioning how could this happen, why me and why now. I just wanted answers when, in fact, there were none. Today, I become 19 years old. Alas, I feel very old. Some of you may be laughing at me for that, but it's true! But aside from that, I also feel very lucky, and very humbled. One month ago, fearing for my life has switched my way of looking at what I have and what I am. I re-learned to look at myself and my disease, no longer disappointment and guilt, but with acceptance and determination to get better. But relearning what you know is never easy. I refuged myself in the things I truly love: my family my friends, singing, reading, coloring,  and surprisingly, writing this blog. These things, as small as they may be, reminded me of who I am and the fact that, as crazy as it may sound to me sometimes, I do matter and I do have a place in this world. I have grown into a more mature person, who no longer wants to hide her struggles and complain to herself, but share with the world and, hopefully, in the process, help others like me. I just feel so much joy in my heart, that it feels selfish to keep it all to myself. Some of you may be confused by what I am saying. Some may think "How can one be grateful when life messes with your health and your feelings in that way?" Don't get me wrong: I am not giving in. But at the end of the day, life is really how you look at it, and it is my choice to live to the fullest, despite the circumstances. People with medical conditions should never feel less worthy of happiness. In fact, it is when things get hard that you get to appreciate what life truly has to offer. Tough love, I suppose. I hope that like me, you find those things that make you happy, embrace them, even if it just for a second, all day and every day. Live happily and never let go.

[lucywithlupus]

“When my loved ones tell me the sparkle in my eyes are back, even if it’s for a day; and on that day, I feel. I feel the things that have been missing, things I didn’t even realize weren’t there anymore.”— Courtenay Ambrose Living with a rheumatoid condition means that you are pretty familiar with the rise and fall of your health. We would wish to always stay up, but sometimes, we fall, and we fall hard. Hospitalizations or a recovery period at home can be daunting, traumatic experiences. They make you realize how in one second, your health could be at risk. Whether it is for excess inflammation, a serious damage of your joints, bones or muscles, organ failure or an infection that your body cannot get rid by itself, there are plenty of possible scenarios where you are placed back in that hospital bed for a few days, only to be sent back home and told to take a few (or many) days off. And I will admit, those days are some of the saddest I have experienced in my life. Coming back home was like an explosion of emotions: anger, happiness, sadness, confusion, fear, etc. Knowing that I would have to take things slow was devastating to me since all I wanted was to finally wipe off all memories of me being in that hospital bed. But not all hope was lost, and, for the first time in so long, I can finally say that I am getting better, and I will continue to get better every day. In this post, we will talk about what can you do during those recovery days and how can you heal yourself in the best way possible. I carefully thought about the things I did during these last three weeks of recovery, and how each of them was either a step forward or backward. You are not alone, and we can put you on the right track to sweet, healthy freedom! Without further ado, here we go: How to get better after a long recovery break? Tip 1: Eat The first three tips that I have to involve the Big Three: Food, Water and Sleep. We all need them, we cannot survive without them, and, in most cases, they are the only three tools your body will need to make you feel better. When I came back to the hospital, I was still trying to listen to my body and what it asked me to do. It was super hard to eat again after almost two weeks of nausea and irregular appetite, so even choosing what to eat was an important daily task. I would constantly ask myself: "am I ok? what do I need?" Note that when you're sick, sometimes what you need and what you won't get mixed up. You may want to eat a tub of ice cream, but maybe that won't help in your healing process. Both what you crave and what you actually end up eating are important. Inform your doctor on both of these: your appetite patterns will always be a key hint of how your organs and metabolism are doing. Now, about nausea: no one likes it. But you have to get through it.Foods with a bland taste and some texture to them like crackers, popcorn and toast made for great post-hospital-food snacks, while also not making me want to throw up. Chewing your food rather than drinking it in soups or smoothies also makes your body fuller for longer. Don't be surprised if you eat more or less than you normally do: just follow what your body is telling you to do! The trick is to be aware of what you are eating, chose healthy things most of the time and treat yourself every so often. This is no time for a strict diet: change your eating patterns according to your mood and hunger levels! Tip 2: Drink water Water, water, water! Drink water, all day, every day, nonstop. Being properly hydrated is the only way your body is going to heal itself. So if that wasn't on your 2019 resolutions list, write it down now. You still have 11 months to achieve master levels of water intake. Another tip: make sure you have good hygiene. Sometimes, it is hard to understand for others, but I can't step into the shower without fearing death by slip. It was worse when my hand still had an intravenous treatment happening, and I needed to protect my hand from water at all times. Being clean and tidy at all times does not only make you feel fresh and clean, but it also makes you feel more motivated to make your day right. So wash your face, clean your teeth, change out of those PJs: make sure every morning, you are ready to step out that door, even though you know that you may not go anywhere. It's small tweaks like this that make a huge difference! Tip 3: Sleep and Rest    This should not come as a surprise to anyone, but sleep is probably what your body does more when its spending energy trying to heal you. Identify how does your body tells you it is tired and wants to sleep, and do not continue binge-watching Netflix just because you want to know what happens in the next episode. Sleep now. You'll thank me later. But obviously, you can't sleep all day. Resting other ways is just as important, but do rest mindfully. This is what I mean: you probably won't feel rested after that 45-minute Forntnite gameplay video, but probably you would by spending 10 minutes doing something else: listening to some music, coloring, playing an instrument, taking a walk. Surprisingly, I have found so many things that I can do to relax that I would not do before because I was too lazy to try them out! And for my fellow workaholics out there, understand that your body is not going to keep up with the same workload as before at first. That is perfectly normal and ok, and you should not feel guilty for that. If you really want to squeeze in some work,  just zigzag your way between breaks and work and eventually, things will get done. Tip 4: Know your limits This ties in nicely with what I was saying before. Coincidence, I don't think so! I understand that finally being free of nurses and doctors telling you do lay down and rest makes you want to do the exact opposite when no one is watching. But the truth of the matter is: if you don't stop yourself, your body will, using its own painful, unpleasant ways. Take your time to heal, that's why you are here in the first place! Accept the fact that you cannot go to work/school/ university or college right now because you put yourself and others at risk. Try to do some tasks, but make sure you prioritize health and rest for now. Plus, let me spill on you some truth: It is not your fault you are in this situation. It never was and never will be. String-theory-wise, there are so many possible realities where you are in the hospital for so many different reasons beyond your illness, like a car crash or an armed robbery. In these realities, no one would dare tell you it was your fault you got hurt, so why now? Why now blame yourself and actually sabotage your healing with bad thoughts? So every time you feel guilty, alone or weak, just think of your day and what you accomplished today. Today you got up, brushed your teeth, put on some clothes, took your meds, etc. Slowly but surely, these little victories will matter and push you forward.                Tip 5: Rebuild your space Imagine that you are a plane crash survivor, drifting in the ocean in a tiny lifesaving boat. Your house is like this boat:  it protects you, but you also spend a heck of a long time in it. So the logical thing to do would be to make sure this tiny boat has all the things you need to survive: a rain collector, a weapon for fishing, some good wifi, etc. In other words, make sure your house is equipped and cozy enough for you to survive the long wait. Bring important things near your bed for what I call "drop everything"  moments: basically, moments when you feel so bad, you just throw everything everywhere and toss yourself in bed, helpless and sad. Have essentials in your nightstand at all times: pills, water, thermometer, tissues, snacks, etc. These will save you during those "I can't get up" tragedies. Also, bring out things to keep you entertained throughout your stay. My room has never had so many books lying around. There are coloring pencils I haven't touched in so long which are now every day "grab and doodle" tool. I still cannot stay be separated from my headphones and fine tunes for long. You get the point. If you need something, do not be ashamed or afraid to ask for it. Call a friend, your parents, your family and let them know how they can help you! Tip 6: Try new things Imagine you are now at work or school, sitting in your desk, your mind wandering. These are the exact moments when you think: I could totally become a great dancer/ artist/ DJ/ chef if I had the time. I could totally start my own projects, read this book I want to read, learn more about this thing I love, etc. I could totally do all of those things, only if I had the time…. Well, knock knock, look who has arrived! Time has! This is the perfect time for you to try out all of the things you could not when you were too busy stuck in your routine. Do them now! Try some coloring, painting, yoga, that recipe you saw online but were too intimidated to do, that choreography that looked cool but challenging, that 1000-piece puzzle someone gave you but you just stashed away for another day. The world is your oyster, so go ahead! Tip 7: Have fun    What better way to spend your time than catching up with the people you love and maybe haven't seen in a while!Meet up with your friends, text them often if they are far away, call them a few times. Do not think that you are wasting their time: if they are your friend when they want to hear how you are doing, how your health is doing, etc. Make sure you are being honest: as cliché as it sounds, sometimes its ok not be ok, and those moments of sadness and worry is exactly what talking to others is for. It is super important to understand that not everything has to be about feeling sorry for yourself for being sick. Not every single activity of your daily need to revolve around your current illness. You have to find ways to distract yourself from the situation you are experiencing right now, otherwise, you will, as we Spanish speakers say, drown yourself in a glass of water. Sometimes, your problems seem bigger than what they truly are, and it is in those times where fun and games should arrive to cheer you up. So enjoy your home: watch some Netflix, play video games, watch funny youtube videos, play some music and dance, etc. Tip 8: Take care of yourself Sadly, not everything is fun and games, and you must find the balance between responsibility and perfectly normal laziness. Take your medications, call the doctor if they are not working properly or have weird symptoms. If possible, keep a record of how you feel each day, what your symptoms are, go to your checkups, etc. Know when your body cannot go further, but also challenge yourself every so often. When you listen to your mind and soul carefully, you being to be more honest with yourself, about what you can and can't achieve at certain times. You will be surprised at how, in the most unexpected moments, you will be able to get out of bed with no back pain, you will be able to go down those stairs with no fear of falling, you will be able to not feel sick for a whole day, then days, then weeks, and so on. Always question yourself: do I avoid this because I might get hurt or do I push myself to try to overcome it? Am I ready yet, mentally and physically, to take that step forward? Tip 9: Have faith Whichever religion you practice, or whichever believes you have on the universe and our existence, faith is a universal entity that will be the one to keep you going even in the hardest of times. Take a moment to meditate, pray or just reflect on what you did and what you can do for yourself today. Those moments are just as important as any doctor's appointment or medicine. They bring you a sense of peace and love that no other thing can give you. Always be thankful for what you are and what you have. Be thankful for both the good times and the not so good ones. Not many people keep up with what you do, so be thankful that you have the strength and wits to make it happen. Tip 10: Prepare yourself for life after your recovery Staying healthy ain't easy after a recovery, especially when reality slaps you in the face when you get back to your routine. Before you even step out, make sure your environment is prepared to welcome you back. Call your teachers, boss, or college professors to let them know where you have been and why you could not come back sooner. They will surely understand and help you to readjust to your old working habits. Take the time to reflect on your goals and what you truly wish to achieve in life. Talking to others about said goals makes it more likely for them to become a reality! Have clear and genuine care for your well being. Being back to your old life doesn't mean that you will put your health to the side after all that work to get better! Do not be ashamed or afraid to speak about what you went through, how you are doing and how can others help you to get back out there. Take it easy! Not everything will be perfect at first, and that doesn't surprise me! There may be a few slips here and there, but going slow and steady will always make you win the race in the end. Believe in yourself: you have overcome so much! Keep going! I believe in you! Aaand that's all for today, folks! Next week, we will move on again to Wednesday's "What is…?" post, and another lifestyle post for Saturday/ Sunday. Sorry for being late this week! I had so many things going on with university, checkups, seeing my friends, etc. I hope you still enjoyed the post and hopefully, some of it will help you survive your next recovery break- if it were to happen, always be ready! Take care of yourself! Love you! Bye! 

[autisticadvocacy]

‘Many non-disabled people who work in disability consider themselves experts’

Dr Ashley Shew of Virginia Tech is helping to shine a bright spotlight on the realities of being a disabled researcher in an ableist world.

“My current projects concern the cultural and design narratives we tell ourselves about disability and technology, and how these narratives are contrary to many of the stories disabled people have about technology.”

[borderlinebadger]

You don’t have to relate to every symptom for your diagnosis to be valid.

You don’t have to relate to every symptom for your diagnosis to be valid.

You don’t have to relate to every symptom for your diagnosis to be valid.

You don’t have to relate to every symptom for your diagnosis to be valid.

Just because you can’t relate to one tumblr post does not mean you are faking it. You are valid.

[lucywithlupus]

What is arthritis?/ ¿Qué es la artritis?

Arthritis: (noun) friend, enemy, part of your body, the victim, bully, strong, weak, ally or oppressor?

We talked a lot about arthritis in this blog: about what it is, how it affected me and how you need to take of yourself if you have it. But we never really started how we should have, in the "Tutorial" section of the game. Which is why this post today will bring you your daily dose of facts and nerdiness to further explain a couple of key points:

   1. What arthritis is?    2. Who has arthritis?    3. How do you know you have arthritis?    4. Where does it come from?    5. How can you treat it?

Don't worry! Each of these will be short and simple, just like they should be. No medical terms or bad internet connection is going to stop me from delivering the truth to the masses!

And now, without further ado, here we go: What is arthritis?

What is arthritis?

"So.. What is it? What is it?!"I see you yell at your computer screen.

I understand that need for an answer. When I first got diagnosed, being told I had arthritis was relieving for 5 seconds, until I realized I had no clue what I was facing and what was causing this.

Well here is your answer, pal! Grab that popcorn!

Arthritisis a symptom of joint inflammation and stiffness that may develop from a completely separate illness or may be independent as a medical disorder. If it is a disorder, it means that there is a chemical disbalance in your body that chronically or temporarily causes pain in your joints.

See? Simple.

Arthritis is what is known as an autoimmunedisorder, in which your body- aka your white blood cells and antibodies- basically attacks itself in a specific region, in this case, your joints.

There are two types of arthritis: systemic, which affects all of your body, and localized, which may affect one or a few joints.

Now, there are more than 100 types of arthritis and arthritis-related conditions. Next up,  a speedy round of the most frequently found types of arthritis in the USA and the UK:

   1. Osteoarthritis:your bones and cartilage are compromised and damaged by breaking of the joint, caused by aging.

   2. Rheumatoid Arthritis (hi!):your immune system attacks itself, targeting your joints.

   3. Psoriatic Arthritis:similar to rheumatoid arthritis, with the addition of itchy red patches on your skin known as psoriasis.

   4. Gout:a very painful form of arthritis, which basically collects uric acid crystals in your joints.

   5. Juvenile arthritis:similar to rheumatoid arthritis, only that it specifically refers to those patients that are diagnosed before the age of 16 years old.

There are other autoimmune conditions like lupus and fibromyalgia, which are similar to arthritis. However, here we are generous and we share, so they will have their own informative posts soon :)

Who has arthritis?

In one of my first posts, we discussed how people with arthritis come from so many different walks of life and that, because it is an "invisible illness", it is very hard to tell if someone has arthritis just by looking at them.

We also noted that some types of arthritis (like osteoarthritis and lupus) tend to be more common in certain age groups (elders and young adults).

A study by the Centre for Disease Control and Prevention (CDC) concluded the following after a two-year study of the American population from 2013 to 2015:

       ○ 49.6% of people with arthritis are elderly people        ○ 26% of people with arthritis are women        ○ 4.4 million with arthritis are Hispanic, followed closely by Caucasians        Basically, I fit into almost all the categories, thanks to life. At least I still consider myself young. For now.

This pattern repeats itself across specific types of arthritis. If you do fit these criteria, it's better to do a checkup and seek early treatments. Before it's too late, people!

How do you know you have arthritis?

You can't until it's too late! We're doomed! Bye!

Just kidding. The first step is seeking is, obviously, a doctor if you feel pain constantly, weaker than usual or just not well.

The doctor (seek a rheumatologist for joints specifically) will most likely begin with a normal checkup and an initial joint evaluation. They will examine your hand, knees and feet, and perhaps, arms and legs. They will look for clues such as visible swelling, stiffness or redness.

After that, they may or may not ask for a blood test or an X-ray, depending if they suspect the presence of arthritis in your body. Normal blood test indicators for arthritis are Sed rate (or erythrocyte sedimentation rate or ESR), C-reactive protein or elevated antibodies. If these three are elevated, then there is a fat chance that you have arthritis and it is inflaming your joints right now.

X- rays are mostly to visualize joint damage. Ultrasounds or MRI may show the loss of tissue, fluid accumulation in the joints, etc.

Warning:Doctors will begin treatment rather quickly when arthritis is detected in the slightest. This is because arthritis doesn't play: it gets worse and worse unless you apply anti-inflammatories asap. This is not harmful to you or your health at all, the doctor is only trying to avoid further damage from happening. Of course, further checkups and tests will give you plenty of time to discuss alternative treatments with your specialist.

Where does it come from?

Nobody knows. That is the right answer this time.

Some medical professionals believe that arthritis is caused by genetic mutations that may or may not hereditary. It has been proven by research that arthritis, in comparison to other autoimmune disorders like Type 1 diabetes, is not as hereditarily transmissible as it once was believed to be.

The class II genes, HLA–DR1 and HLA–DR4, are the ones now being investigated and partially blamed to be primary suspects.

However, many believe that lifestyle and environmental conditions can increase the chances of having arthritis. After all, stress, long work hours, pollution, low, and mental illnesses tend to go hand in hand with arthritis patients.

So do not worry that much yet. But always stay ready!

How can you treat it?

I have talked about these two already:Ibuprofenand Paracetamol, queens of the universe, saviors of today and tomorrow, and tomorrow, and tomorrow….

You get the point. Normally, if a doctor detects arthritis, they will right away prescribe paracetamol. This is because ibuprofen and other NSAIDs are very common allergens that may be risky to give to a new patient right away, especially when they do not have a complete medical record.

So, if your doctor gets suspicious and gives you a high brow, just take the paracetamol as instructed, inform them of your progress and come back later if you need to. Don't go through the pain without any help! It will only get worse! Trust me!

Aaand there you have it, folks! I hope you learned something today and hopefully will not forget your weekly dose of facts featuring me, the voice of reason. Take care of yourself, go to your checkups and don't worry too much!

Love you! Bye!

References

(1) Sed rate (erythrocyte sedimentation rate). Available from:

https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

.(2) Robert F. Meenan, Paul M. Gertman and John H. Mason. Measuring Health status in arthritis. Arthritis & Rheumtology. 1980; 23 (2): 146-152. Available from:

https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.1780230203

.(3) David N. Glass, Edward H. Giannini. Arthritis & Rheumatism. Official Journal of the American College of Rheumatology. 1999; 42 (11): 2261-2268. Available from:

https://onlinelibrary.wiley.com/doi/epdf/10.1002/1529-0131%28199911%2942%3A11%3C2261%3A%3AAID-ANR1%3E3.0.CO%3B2-P

.(4) Joseph Lee Hollander. Arthritis and Allied Conditions: A Textbook  of Rheumatology. ; 1960.(5) DrAngeloRavelliMD, ProfAlbertoMartiniMDa. Juvenile Idiopathic Arthritis. The Lancet. 2007; 369 (9563): 767-778. Available from:

https://www.sciencedirect.com/science/article/pii/S0140673607603638

.(6) Sources of Arthritis Pain  Available from:

https://www.arthritis.org/living-with-arthritis/pain-management/understanding/types-of-pain.php

.------------------------------------------------------------------------------------------------------------------------------Artritis: (sustantivo) amigo, enemigo; parte del cuerpo; víctima, abusador; fuerte, débil; camarada o opresor?

Ya hemos conversado mucho a cerca la artritis en este blog: qué es, cómo me afectó y cómo necesitas cuidarte si la tienes. Pero nunca iniciamos donde debimos haberlo hecho, en el nivel "Tutorial" de este videojuego. Por eso, en este post les traigo su dosis diaria de ciencia y verdades para explicar unos puntos clave:

¿Qué es la artritis?

¿Quién tiene artritis?

¿Cómo sabes si tienes artritis?

¿De dónde viene la artritis?

¿Cómo la puedes tratar?

No se preocupen! Cada una de estos puntos serán rápidos y sencillos de enter, justo como deberían ser. Ningún término médico o mala conexión al wifi me detendrá de exponer la verdad a las masas!

Y ahora, sin más preámbulos, aquí vamos! ¿Qué es la artritis?

¿Qué es la artritis?

"Así que… dinos ya, qué es? Qué es?!"Te veo gritarle al monitor.

Entiendo tu necesidad de una respuesta. Cuando a mi me diagnosticaron, el diagnóstico definitivo de artritis me dio tranquilidad por 5 segundos, hasta que me di cuenta que no tenía ni idea de qué estaba enfrentando y qué lo causaba.

Bueno aquí están esas respuestas también! Agarra tu canchita!

La artritis esun síntoma de inflamación articular y rigidez que puede desarrollarse por una enfermedad totalmente diferente o puede presentarse de manera independiente como una condición médica. Si es una condición, significa que tu cuerpo tiene dolor crónico o temporal articular.

Ves? Eso fue fácil!

La artritis es una condición autoinmune, lo que significa que tu cuerpo- tus células blancas y anticuerpos-  básicamente se ataca a sí mismo en una región específica, en este caso tus articulaciones.

Hay dos tipos de artritis: sistémica, que afecta todo tu cuerpo, y localizada, que puede afectar una o más articulaciones.

Ahora, hay más de 100 tipos de artritis y condiciones relacionadas. Proseguiremos con una ronda rápida de los tipos de artritis más frecuentes en los Estados Unidos y en Gran Bretaña:

Osteoartritis:tus huesos y el cartílago están comprometidos y dañados porque la articulación se está deteriorando, es causado por el envejecimiento.

Artritis reumatoide (hola!):tu sistema inmune se ataca a sí mismo, atacando tus articulaciones.

Artritis psoriásica: similar a la artritis reumatoide, pero también incluye ronchas rojas y picazón en la piel, una condición mejor conocida como psoriasis.

Gota:artritis altamente dolorosa, que acumula cristales de ácido úrico en tus articulaciones.

Artritis juvenil:similar a la artritis reumatoide, solo que es específicamente diagnosticada antes de los 16 años de edad.

Condiciones autoinmunes como el lupus y la fibromialgia son otros diagnósticos similares a la artritis, pero que aquí los trataremos con cariño y les haremos sus propios posts informativos :)

¿Quién tiene artritis?

En uno de mis primeros posts, discutimos cómo las personas con artritis tienen vidas totalmente diversas y, por ello, es muy difícil distinguir la artritis solo con mirar a una persona.

También vimos que hay tipos de artritis (como la osteoartritis) tiende a ser más comunes en ciertos grupos de edad (como los viejitos).

Un estudio por el Centre of Disease Control and Prevention (CDC) concluyó lo siguiente después dedos años de examinar a la población estadounidense del 2013 al 2015:

49.6%  de personas con artritis son ancianos

26% de personas con artritis son mujeres

4.4 millones de personas con artritis son hispanas, seguidas de los caucásicos

En pocas palabras, yo califico para casi todas estas estadísticas, yupi. Al menos todavía me considero joven. Por ahora.

Este patrón se repite a lo largo de todos los tipos de artritis. Si crees que tu perfil es parecido a lo descrito, es mejor hacerte chequear y buscar un tratamiento temprano. Antes que sea demasiado tarde!

¿Cómo sabes si tienes artritis?

No puedes! Es demasiado tarde! Estamos condenados! Adios mundo cruel!Solo bromeo. El primer paso es, obviamente, ir al doctor si sientes dolor constante, debilidad o simplemente no te sientes bien.

El doctor (un reumatólogo es un doctor para enfermedades articulares) iniciará con un chequeo regular y una evaluación inicial de las articulaciones. Examinará tus manos, rodillas, pies y quizá, brazos y piernas. Se encontrarán pistas como inflamación visible, rigidez o manchas rojas.

Después de eso, te pedirán o no que completes un análisis de sangre o una prueba de rayos X, dependiendo si hay sospecha de artritis.

Los indicadores de sangre más comunes para la artritis son la velocidad de sedimentación or ESR, la proteína C reactiva o anticuerpos elevados. Si estos tres indicadores salen elevados, hay una buena chance de que tengas artritis y esté causando un proceso inflamatorio en tu cuerpo justo ahora.

Los rayos X se utilizan para visualizar algún daño articular. Ultrasonidos o MRI pueden mostrar pérdida de tejido, acumulación de fluidos en las articulaciones, etc.

Advertencia:Los doctores inician rápidamente el tratamiento para la artritis cuando esta es detectada, incluso de manera mínima. Esto es porque la artritis no es broma: solo se pone peor y peor si no aplicas anti inflamatorios de inmediato. Este tratamiento inicial no debería comprometer tu salud en absoluto, pues el especialista solo esta tratando es disminuir el daño lo más rápido posible. Claro que, después de futuras consultas y pruebas, deberías pensar y discutir con tus padres y doctor acerca de la posibilidad de tratar la artritis de otros modos.

¿De donde viene la artritis?

Nadie sabe. Esta vez si es la respuesta correcta.

Profesionales de la medicina creen que la artritis es causada por mutaciones genéticas que podrían o no ser hereditarias. Fue probado en múltiples ocasiones que la artritis, en comparación a otros desórdenes como la diabetes Tipo 1, no es tan transmisible por herencia como se pensaba.

Los genes de clase II, HLA–DR1 y  HLA–DR4, son los que ahoran están siendo investigados y parcialmente puestos como sospechosos principales.

No obstante, muchos creen que el estilo de vida y las condiciones medio ambientales incrementas las posibilidades de tener artritis. Esto es parcialmente cierto, pues el estrés, las largas horas de trabajo, la polución, la baja estima y las enfermedades mentales van de la mano con los pacientes de artritis.

Así que no te preocupes mucho de eso todavía. Pero siempre mantente alerta!

¿Cómo tratar la artritis?

Ya hablé de estas dos: Ibuprofenoy Paracetamol, reinas del universo, heroes del hoy y del mañana, y mañana, y mañana….

Creo que ya lo entendiste. Normalmente, si un doctor detecta artritis, prescribirá panadol de inmediato. Esto es debido a que el ibuprofeno y otros medicamentos no esteroideos (AINES) pueden causar alergias, por lo cual es riesgoso en un paciente nuevo sin un historial médico completo.

Así que, si tu doctor se pone sospechoso, solo toma el panadol como indicado en tu receta, informa al doctor de tu progreso y regresa más adelante si lo necesitas No vayas por el dolor sin ayuda! Toma el panadol por ahora! Confía en mí!

Yyy eso es todo lo que tengo para ustedes hoy, amigos! Espero que hayan aprendido algo hoy y no olviden su dosis semanal de información conmigo, la voz de la razón. Cuídense, vayan a sus chequeos y no se preocupen mucho!

Los amo! Chau!

References

(1) Sed rate (erythrocyte sedimentation rate). Available from:

https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

.(2) Robert F. Meenan, Paul M. Gertman and John H. Mason. Measuring Health status in arthritis. Arthritis & Rheumtology. 1980; 23 (2): 146-152. Available from:

https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.1780230203

.(3) David N. Glass, Edward H. Giannini. Arthritis & Rheumatism. Official Journal of the American College of Rheumatology. 1999; 42 (11): 2261-2268. Available from:

https://onlinelibrary.wiley.com/doi/epdf/10.1002/1529-0131%28199911%2942%3A11%3C2261%3A%3AAID-ANR1%3E3.0.CO%3B2-P

.(4) Joseph Lee Hollander. Arthritis and Allied Conditions: A Textbook  of Rheumatology. ; 1960.(5) DrAngeloRavelliMD, ProfAlbertoMartiniMDa. Juvenile Idiopathic Arthritis. The Lancet. 2007; 369 (9563): 767-778. Available from:

https://www.sciencedirect.com/science/article/pii/S0140673607603638

.(6) Sources of Arthritis Pain  Available from:

https://www.arthritis.org/living-with-arthritis/pain-management/understanding/types-of-pain.php

.

[lucywithlupus]

When the sun is so bright you can't even see where you're going! 😂🌞

[lucywithlupus]

The Ultimate Kit for Arthritis Survival

Behold, the most powerful Ziploc bag you will ever meet. Hello guys! Today, I bestow on you some wisdom. During the first years or months of having a rheumatoid disorder, keeping track of your pills and doing your everyday activities can be a challenge. Especially when you do not have things to help you out in moments of need. So today, I am going to tell you the best and only items you may need to take with you in your already (let's face it)  messy bag to save you in those creaky moments. Without further ado, here we go: Ultimate Kit for Arthritis Survival!

Musts

Your Meds It goes without question: where you go, your meds will follow. You know what you take and what allows you to stay functional during the day, so please take it with you in case of an emergency! Maybe that day your rheumatoid factor spiked up and decided to ruin your day, or maybe you have to go somewhere for longer than needed and you are stuck in the sticky situation of not having your meds available when you have to take them. So please meds in the bag. Even if you think you won't need them! Take all of the ones you take during the day! You have no idea how many times I was saved by my anti-inflammatories when being away from home. To make it easier, use those tiny pill containers to place them inside. Curse pharmacies or something but pills doesn't come in rainbow colors and may get confused if you just shove them in there with no order or nametag. Don't carry the whole jar though, it may explode!

Thermometer Your thermometer is your best friend. You know you have a best friend when both of you have a common enemy: fever. Basically, fever is caused in your body when your hypothalamus is trying to maintain temperature homeostasis- aka regulate your body temperature- at the moment pyrogens attack. Pyrogens are substances that induce fever, and these could be either microorganisms and viruses- aka infections- or pyrogenic cytokines, which are produced by your own body when inflammatory processes - like rheumatic inflammation- are going on. So keeping a thermometer is always key to have your body levels on check. You don't even need to check that often, only when you feel something is not right. Just make sure it is not an original mercury-filled thermometer, as those may break in your bag and poisonify everything you own. Including the bag. And you. Instead, I would recommend an electrical thermometer: they are pretty inexpensive, more accurate, less difficult to see and even beep when they are done so you know you waited enough time. So throw one in there too! What's next?

Panadol Panadol is your other best friend. Love her in all her gentle yet pain slaughtering glory. Scoop some panadol pills and place them into your small pill case, making sure to write her name down so you don't confuse yourself later! Warning: Be careful when consuming panadol often, it does not cause harm but may affect your liver in the long run. Just follow the package instructions and we'll be all good to go.

Med schedule This is actually something many people forget about because it just seems so unnecessary: why keep my schedule in there when I can just memorize it or use an app instead? Well, it makes sense because you are basically placing your plan of attack right inside your bunker. Right in the wall where you can see it, grab your ammo and battle out. Sometimes when I used apps, my phone died or I had it in my pocket and never saw the reminders. It is always better to trust the good old post-it note and smack it right there inside the bag for when you really need it.

Antibacterial gel Bacterias are everywhere. I think my microbiology teacher put it best: they are on you, in you, I shall repeat, inside you and all around you. And the sad thing about rheumatoid conditions is that immunosuppressors- aka medicine that lowers your immune system's ability to defend itself-  are a very common treatment. Which means that you are under constant attack by the outside world, everywhere, all the time, every day. No pressure. Throwing some nice scented antibacterial gel in your bag is just a habit for me (look at the small bottle! It has sparkles in it!) It just takes one thing off of my mind to worry about. Every time I please, I just plop some of that clean goodness in my hands and bam! No germs. Don't abuse this, because they can be harmful to your skin, and sometimes can even contribute to germs getting stuck in your hands if they are not actually "antibacterial". Be careful and pick the sparkliest one.

Moisturizer or pain relief cream Everyone has a moisturizer at their house. Jot it in your bag, or a small amount, just to make sure you have a medium to massage your joints in when they get inflamed. Maybe today you run too fast or went up those stairs too enthusiastically. So in those moments its great to sit down, examine your inflamed joint and rub the pain away. Icy Hot is a great brand for chronic joint problems: it burns terribly at first but then it leaves you icy cold and fresh. Other gym-branded pain relievers will do as well since muscle tearing conditions like lupus also apply to what the packaging indicates. Give yourself a break and soon you can continue with your day as nothing happened :)

Optional These are items that you do not need to have. It would be worth to spend on them eventually, but if you do not have the money or ability to get these, then do not worry. The items above will do just fine for now. (Remember tho: student discount codes exist too!)

Tissues: keep you fresh and ready if you are sick or have a fever. Gloves and mask: just to protect your nose and mouth from the smoke and overcrowding. Pretty inexpensive if you know where to find them. Worth investing the extra money instead of using disposable ones. 

Heart rate monitor (HRM) or sphygmomanometer: definitely more of a luxury item, but are now found relatively easily in phone apps and smartwatches. People use them at the gym, on hikes and, sometimes, just bored on the couch to checked if they are secretly a robot.

Spyro-majigger is basically what the doctor uses to measure blood pressure. Keeping track of your heart action is great to make sure the medicine is not giving you tachycardia and that fever is controlled. It may be useful in your next appointment!

Eyedrops: keeping those eyes clean of any superficial dust during the day.

The actual bag: now, the Ziploc bag is an option, but if it were me, I would recommend investing in an actual cloth makeup bag or school pencil case to carry your medicine. It's discrete, much nicer and less likely to break in your pockets or purses or schoolbags. Just know to wash it regularly and keep what's inside at bay.

And that is all that I have for today, folks! See you around! Love you!                   ------------------------------------------------------------------------------------------- Observen, la bolsa Ziploc más poderosa que ustedes conocerán. 

Hola chicos! Hoy dia les daré un poco de mi sabiduría. Durante los primeros meses de tener una condición reumatoide, fue un desafío planificar mis pastillas y hacer mis actividades diarias. Así que hoy les diré algunas de las cosas que tú necesitarás llevar contigo en tu (seamos honestos) desordenado bolso o mochila para esos momentos de riesgo. Sin más preámbulos, aquí vamos: El Ultimate Kit para sobrevivir a la artritis.

Cosas que debes tener

Tus medicinas

Fuera de bromas: donde tu vayas, tus medicinas te seguirán. Tu sabes lo que consumes y qué te ayuda a mantenerte funcional durante el día, así que por favor agarra lo que necesites en caso de una emergencia!Quizá ese dia tu factor reumatoide decidió subir abruptamente y arruinar tu dia, o quizá debas ir a algún sitio por más tiempo del necesario y estás atorado en una situación pegajosa hasta nuevo aviso, sin tus medicinas para salvarte. Así que: medicinas en la bolsa. Incluso si piensas que no las vas a necesitar! Lleva todas las que tomes durante el dia! No saben cuantas veces fui rescatada por mis anti inflamatorios cuando estaba fuera de casa.Para hacer las cosas más sencillas aún, utiliza esos mini contenedores de pastillas para organizarte. Las malvadas farmacias no hacen pastillas de todos los colores del arcoiris y podríamos confundirlas si solo las tiras en tu cartera sin orden o el nombre escrito encima. Solo no cargues el jarro entero: se rompera!

Termómetro

Tu termómetro es tu mejor amigo. Sabes que tienes un mejor amigo cuando ambos odian a la misma persona: fiebre. Básicamente, la fiebre es causada cuando el hipotálamo trata de mantener tus niveles de temperatura estable. Este balance corporal se llama homeostasis, y puede perder el control cuando los pirógenos atacan. Pirógenos son substancias que inducen a la fiebre. Esta se produce en el cuerpo ante la aparición de microorganismos y viruses o citocinas pirógenas, que se producen por tu propio cuerpo cuando los procesos inflamatorios reumáticos ocurren. Un termómetro siempre es clave para tener un buen registro de tu temperatura. Ni siquiera necesitar chequearte tan a menudo, solo cuando sientas que algo no está en orden. Por favor no utilices uno tradicional lleno de mercurio, pues se puede partir y envenenar todo lo que tu tienes ahí. Incluyendo la bolsa. Y a ti. En vez de eso, opta por un termómetro eléctrico: el precio es más bajo que nunca, son más precisos y menos difíciles de usar, incluso suenan cuando ya puedes ver qué temperatura tienes y te evitas la espera dudosa. Así que agrega un termómetro también ahí! Que sigue?

Panadol

Panadol es tu otro mejor amigo. Ámala en toda su gentil y asesina-de-dolor naturaleza. Toma unas cuantas y agregalas a tu pequeño pastillero, escribe su nombre para que no te confundas!Advertencia: Ten cuidado cuando consumes panadol muy a menudo. No hace mayor daño en exceso pero puede afectar a tu hígado a la larga. Solo sigue las instrucciones del empaque y estaremos listos para salir.

Antibacterial

Las bacterias están en todos lados. Creo que mi profesor de biología lo explica de la major manera: están sobre ti, en ti, repito, dentro de ti y en todo tu alrededor.

Y lo más triste de las condiciones reumáticas es que los inmunosupresores- o medicina que reduce la actividad de tu sistema inmune y este no pueda defenderse- son un tratamiento común de la artritis. Esto significa que tu te encuentras en la línea de fuego cada vez que sales al mundo exterior, todo el tiempo, todo el dia, todos los días. Sin presión.

Tirar una botellita de gel antibacterial con un olor rico en mi mochila se volvió un hábito para mí (Mira la botellita! Tiene escarcha adentro!). Solo el tenerlo quita esa preocupación de mi cabeza. Cada vez que yo plazca, puedo poner un poco de este amiguito en mi mano y bam! Sin gérmenes.

No abuses de esto tampoco, por que algunos pueden ser malos para la piel o incluso contribuyen a que los gérmenes se peguen a tus manos si en serio no son tan "antibacteriales" como dicen. Ten cuidado y agarra el más brillante.

Crema humectante o crema para dolor muscular

Todos tienen al menos una botella de crema humectante en casa. Ponla en tu cartera, o separa un poco en otro envase, para asegurarte de tener algo con qué masajear tus articulaciones si estas fueran a inflamarse.Quizá hoy corriste demasiado rápido o subiste esas escaleras muy vigorosamente. En esos momentos, es bueno sentarse, examinar tu articulación inflamada y sobar hasta que ya no te duela.

Icy Hot es una marca buenísima para problemas crónicos de las articulaciones: te quema increíblemente al principio pero después de dejar frio hielo y fresco. Otras cremas musculares de gimnasio también funcionan, pues cuando los músculos se desgarran después de un buen entrenamiento, producen la misma situación que el lupus en tu cuerpo.

Date un descanso y pronto podrás continuar con tu dia como si nada hubiera ocurrido :)

Opcional

Estos son artículos que no necesitas tener. Valdría la pena invertir en ellos eventualmente, pero sí en serio no puedes costear telos o no tienes la habilidad de conseguirlos, no te preocupes. Los que mencioné antes está bien por ahora (Recuerda que los descuentos de universitarios existen!).

Tissues:para mantenerte fresco y listo si estás enfermo o si tienes fiebre. Guantes y máscara:sólo para proteger tu nariz y boca del humo y de los sitios con mucha gente. Ahora los precios son bastante favorables si sabes donde encontrarlos. Es una buena inversión a diferencia de las máscaras desechables.

Monitor de frecuencia cardiaca (HRM) o esfigmomanómetro:definitivamente algo más costoso, pero ahora los puedes encontrar en tus apps de teléfono y smartwatches. Las personas los usan en el gimnasio, en caminatas o, a veces, aburridos en el sillón chequeando que no son secretamente un robot del gobierno.

Esfigmo-nosequé es básicamente lo que usa el doctor para medir tu presión arterial. Tener un buen record de tu perfil cardiaco es excelente para asegurarte que tu medicina no te de taquicardia y tu fiebre esté regulada. Quizá sea útil en tu próxima consulta médica!

Gotas de ojo:mantiene esos ojitos limpios de cualquier polvo superficial durante el dia.

La bolsa:ahora, bolsa Ziploc es una opción. Si fuera yo, recomendaría invertir en una pequeña bolsa de tela, estuche de maquillaje o cartuchera para cargar tus medicinas. Es discreta, más bonita y menos probable de romperse en tus bolsillos, carteras o mochilas escolares. Solo recuerda limpiarla con frecuencia y revisar qué hay dentro de vez en cuando.

Yyy eso es todo, amigos! Nos vemos pronto! Chau!

[lucywithlupus]

Slow but Sure Recovery

The idea of rebirth has been in my mind lately. How a moment of vulnerability so strong can lead us to the lowest of places, only to be lifted back up when we least expect it. At that point, our minds and bodies, so fragile and broken, slowly begin to reform and mature, and hopefully, stay that way. 

This is nothing to take lightly. After the hospital, I was angry, frustrated at everyone and everything for letting me spend so much time in that place. Frustrated at me for not being able to cure faster, to get over what had happened. I was sad, scared of going back, scared of not being able to go back to study, scared of being left alone and something happening, etc.

Slowly but surely, things got better. My mind and my body decided to make a deal: that both of them would do what it takes to get through this, together. No longer did the overprotective side me (calculating, careful, caring yet harsh) need to bully the more adventurous, creative, irresponsible me. Both sides trusted each other to collaborate together, lean on one another and accept their faults and victories. We do not know everything, if we did, our lives would have no meaning.

There is a quote in a book I am reading right now: "Mental Fitness" by Rafael Gomez Gamboa. It goes as follows:

"Those who have suffered for a short time are strong. Those who have suffered for longer are stronger. But those who have suffered all their life can either be strong or become weak."

Sounds like something too fantastical to be true. Real life doesn't follow patterns like this, but sometimes it does, and in those moments one needs to seek their own faith and ask themselves: what will I do to stand up again? What can I do to gain my life back and remodel it in a new way of thinking?

So if you are now in a crisis moment, take it easy on yourself. Be at peace with you and others. Make sure you listen to your body, mind, heart, and soul, always working together, slowly but surely, to be the best version of yourself. Rest when you need it and work when you must, have fun when you wish and take care of yourself when you ache.

We are stronger every day, we can get through this. Together.

[lucywithlupus]

Top 4 Bad & Good Things about my Body/ Top 4 Cosas Malas & Buenas de mi Cuerpo

Let's get real: arthritis sucks. It sucks incredibly hard. It sucks so bad not even all of the straws in this planet (serious issue) could suck as terribly as receiving the sad news that you suffer from a rheumatic condition.     And because this condition is that terrible, it can lead your mind, heart, and soul to constantly attack your body with negative feelings, perceptions, and emotions. It is like your mind cannot stop concentrating about how not good your body is, how it fails to do the smallest things, or how it is not doing the things you ask it to do.    The Mental Health Surveys published in 2008 their results on mental disorders among persons with arthritis. With a sample of 10 641 adults (wow!), with 78% response rate in an audience with 23% reporting at least one medical disorder in the past 12 months, they clearly showed that these disorders and mental illnesses go hand in hand. About 35% of people with a mental health disorder did seek treatment, while more than half did not even consider the idea.    These were their conclusions:

"The high rate of not consulting among those with disability and comorbidity is an important public health problem. As Australia has a universal health insurance scheme, the barriers to effective care must be patient knowledge and physician competence."    Aka there is a LOT of work to do. A lot.        Another study by SAGE Journals said first what was said by The Mental Health Surveys in 2005, only focusing on rheumatoid arthritis (RA) About 150 participants, with varying duration of time since diagnosed, and the results were the following:         1. Perceiving illness as that something closest to you worsened depression and overall quality of life.     2. Remaining calm actually worked on those recently diagnosed:

"Optimism related to lower pain in early and intermediate RA. Social support related to lower fatigue in established RA. Indications for interventions targeted by disease duration are discussed."    Sometimes, when the years go by and your good ol' pal arthritis has been sitting in your couch for way too long, it can really get heavy on your shoulders. So much to do, so many things to see and experience, only to be dragged down by your frenemy right there *aggressively stares at chair*.    But it does not have to be this complicated. Your body and your mind are one and the same, they do not have to hate each other, or disconnect from one another in a way that actually will strip away all control from your hands. Your mind and body should not have fights every two seconds, they are both just trying their damn hardest to get by, and you know that. I know that. Your loved ones know that.    So let's do it for them, for you and me, but most importantly, you.    Without further ado, here we go! Top 4 Bad and Good Things about my Body with Arthritis.    

   Bad Thing 1: My body is weak

This used to be my mantra for six years of my life. I used to play this on repeat in my head like the hottest new summer mixtape. I already had enough with high school, trying to get unimaginable perfect grades and carrying the burden of being told every day that I was Einstein or something and I could achieve those grades if I wanted to.

The problem is that I wanted to, but know I know I never did. Does that make sense?

Let's be real. What kid likes to be sat down, all day, staring at colorful post its and trying to remember those English quotes for a massive surprise essay next week? No one! Not even me now, even though I am an adult. Kinda.

I just dreamed of getting to university, the days of the present shifting by while I had my eyes on the prize. At least I managed to get a spot on a university I love and enjoy with all my heart.

But even at arrival, I felt weak. Felt weak that I could not sit in my lecture hall comfortably for an hour. Felt weak because I had to take a nap in the afternoon after a three-hour lab. Felt weak because I could not finish that deadline because my knees hurt way too much to sit down and type away.

Feeling weak is normal, but we need to know that we cannot do everything. Nothing in life is free, but also it does not mean we do not take a break every now and then to make sure our body is taken care of. You cannot achieve what you want without rest. Your body will blow up! Poof!

Do not do that to yourself. Please.

Good Thing 1: My body is strong

Think of the strongest person you know. It's probably its Dwayne the Rock Johnson so let's stick with him.

Dwayne is a huge person. His arms are probably bigger than my ribcage, and his ribcage is probably bigger than my entire body. He trains a lot, eats more than that and is always ready to sing in the next Disney Movie, kick butt in the next action feature or yell in Moati dancing with a bunch of ten-year-old football players (pls do google this. It is hilarious.)

His life is pretty incredible, but that does not mean he did not have his up and downs. His childhood was pretty intense, as he was a major athlete and had to keep up with the legacy of wrestling legends established by his grandfather.

But this 101 on Dwayne's life isn't about him, it's about you! Look at you! You are the Rock too!

You managed to be told you have a condition that may probably never leave you and you successfully did not attempt to quit your life. You basically babysit your body all day, every day, trying to give it what it needs and avoid what it does not. You made and will make sacrifices to make sure you and those with you are ok, under any circumstance.

We get up every morning, in stinging pain, attempting to fling our bodies out of bed and waddle to the bathroom, take a shower, change clothes, brush our teeth, stuff our aching feet into some shoes and get out that door because we know we would go mad if we did not fight this every day. We know that if we did not go through that hassle every day and showed arthritis who's boss, our minds would collapse, we would lose the fight.

So keep fighting.

Bad Thing 2: My body is weird

Needless to say, a typical human body does not wreck itself everytime it goes up the stairs (remember kids: the first step is always the hardest). It is simply not the way it was designed to function, simple biology. Now, that does not mean your body is plain vanilla, but it also does not mean your body is an abomination like the ones in horror movies- or the ones who barely make it through horror movies.

My body is not weird. Period. I already spoke about how people are so legitimately shocked that I can properly function like the productive adult that I am, let alone those who just disapprove of me being me in public. Well, too bad Susan, I am here and so is my medical condition! I can't press the off button today thank you very much.

Your body can do so many amazing things. It can take care of itself and others. It can stump to the places you need to be in, or walk in good days, or run in the best days. It can do so many wonderful things, but you have to stop telling yourself that you are the odd one out. Anyone with a slight glimpse of intelligence will not care that you have to take your pills at this exact time, or that you have to sit down and rest for a while.

Keep those people close, but your enemies closer. No enemies, but confused strangers. Teach them about your condition, educate the public on what it is and how they can actually help us get by (aka this blog!).

Good Thing 2: My body is interesting

Maybe its because I am studying for a degree in science, but natural curiosity is never as bad as some people may think. Your body actually is fascinating to many doctors and field experts out there! The way it behaves and its mysterious ways are like an elegant puzzle, an enigma for them to observe and somehow complete.

Now, don't sell yourself to science, unless you really want to. Find money elsewhere.

I was always questioning why my body behaved this way until I realized the way I felt, when I felt it and how I felt it was pretty consistent, almost clock-like. The way our body operates is highly interesting, investigating on the subject won't blow your mind, but it may lead you to ask a question or two as to why your body is doing this to itself.

Maybe googling or reading a few articles some things will help you share your journey with others. Soon I will teach you the best ways to research for your own condition in a new post!

Just close your eyes for a moment, and focus on every single part of your body, one by one. Think about one good thing they did today: your feet took you to have breakfast, your hands held your favorite book, your eyes watched a beautiful movie today, your mouth helped you eat lunch, etc.

Any insignificant action that your body does is amazing and should be celebrated. Treat yourself for that!

Bad Thing 3: My body is ugly

Ugly duckling never felt so ugly. Now she did not only had to worry about her thick legs that could not fit inside those terribly small skinny jeans or that small bump in her stomach where, surprise surprise, but organs are also supposed to be in. Suddenly, what little body confidence she had taken a whole new spin: her body was now also not cute in other ways. Like abnormally inflated joints, finger stuck in a claw-like fashion, or the constant weight gain and loss I had during my experience with arthritis due to the lack of exercise.

Arthritis and other rheumatic conditions make yourself feel terrible about your appearance. Taking care of your looks sometimes is not a priority anymore. It can even be a challenge: you have to pick outfits, wear uncomfortable shoes, not have enough space in your purse or pockets (women pockets are the worst!period!) to carry your medicine around. Makeup can sometimes even be harsh on your skin when you get redness, or your hair may fall out because of the medication.

Let's not talk about shaving. Avoid for our own good.  

But everyone deserves to feel cute, at least once in a while. Now I really don't care what they tell me: I can look a mess but feel beautiful, every single day. Because my body is my home, it takes care of me, and I take care of it. It deserves pampering and I will provide it every now and then.

Good Thing 3: My body is beautiful

Now, let's repeat the exercise we just did, now open your eyes. Look at yourself in the mirror, take in all that you are, every curve, every little detail, and imperfection. Say one nice thing about it all. Look at those eyes! Look at that hair! So stylish! Look at those shoulders! So strong! And so on.

No one's body is perfect, and trying it to make it magazine ready all day is not worth it. But please have the chance to try new things, look for new clothes (or used ones) that make you feel good, beautiful and confident all day!

So if you see a cute dress that you like and you can afford it, go for it! You will slay whatever place you will wear it to. Did you saw a nice shirt on sale? Buy it! You will look so cool, so fly.

Hint: there will also be a new post coming about tips and tricks on how to buy and wear clothes when you have arthritis. Struggling with that zipper every morning is a major problem! Stop!

Bad Thing 4: My body will never heal

   As already discussed, no one really knows why arthritis is a thing, and thus, no one knows how it leaves and why. Maybe it has to do with stress. Perhaps it has something to do with environmental conditions or lifestyle. Who knows.

But that does not mean you lose hope that easily. Sure, some of us have had our condition for five, ten, even thirty years, and it still there. But arthritis' place in our bodies is not permanent, I swear on Yuval Harari (aka one of my favorite authors of all time).

You can bet all you want that when you least expect it, this uninvited acquaintance will be poofed off, and free you shall be at last. Just make sure you are working for it: be kind to yourself, take your meds, eat healthy (at least try), do some exercise, educate yourself and others, help out those in need, etc.

Good Thing 4: My body will get better

It will, and it is. Yas.

I sometimes I feel challenged to balance my priorities and make sure I am not overworking myself when trying to get better. The irony of it all: we sometimes work too hard in trying to get better sometimes. We read a lot, research to no end. We try so many different diets, hoping one will be the one to cure us at last, we go to so many different treatments, yoga sessions, detox classes, and God knows what more.

Being excited about staying healthy is important, a good solid start. But do not go crazy trying to find a cure that may not even be accessible to you at stores or detox juices. Instead, trust your body. It knows what it's doing, most of the time. It will heal itself in the only way it knows how to: eating, sleeping, resting, drinking water,  and asking for stuff. Lots of stuff. Another hint: new post on how to make a survival kit soon!

Getting better can sometimes feel like a rollercoaster: sometimes we are up, sometimes we fall head first 20 feet up in the air towards the solid ground. Gravity is harsh, man.

But you know what I a trying to say. Things will not always be easy, and sometimes you will not be able to control everything or know what to do. That's why you have to ask for help. From your parents, your caretakes, your doctors and your friends. Build a support circle around you so you always know someone always has your back, sometimes literally.

Arthritis is no piece of cake, and other rheumatic disorders are not either. They are tasks for us to fulfill, but we are not bad. We are not sick. We are not ugly. And we definitely are not going to sit here and take it. Because we have enough things to worry about, and we could not care less about what you or others have to say about our progress. We know our worth, we appreciate ourselves and celebrate our bodies in the best way we can: by treating it right, with respect, dignity, love, and courage.

Love you so you can love. See you around!

Also, I would love to share with your guys this lovely group of families in Kampala with children with disabilities at Ndagire Ritah @ritandagire76 on Instagram. Please copy and paste their username and say hi! Drop a donation if you can! It's for a great cause!

----------------------------------------------------------------------------------------------------------------------------------

Seamos sinceros: la artritis apesta. Increíblemente. Es tan mala que ni siquiera todas las cañitas del mundo (problema bastante serio) no podrían igualarse a recibir la triste noticia de que tu sufres de artritis reumatoide.

Y por que esta condición es tan horrible, puede convencer a tu mente, corazón y espíritu de atacar a tu cuerpo con pensamientos negativos, percepciones falsas y emociones dañinas. Es como si tu mente no puede dejar de concentrarse en todo lo malo que tu cuerpo es, todas las fallas que comete, incluso en las quehaceres más pequeños, o cómo no está logrando las cosas que tu le pides que haga.The Mental Health Surveys publicó en el 2008 sus resultados en la relación que existe entre las enfermedades mentales y la artritis. Con 10 641 sujetos adultos puestos a prueba (wow!) y una tasa de respuesta del 78%, el estudio involucró casi 2,500 personas discapacitadas. Los resultados demostraron que los desórdenes reumatológicos y las enfermedades mentales van de mano en mano. Casi 35% de las personas que padecían de una enfermedad mental buscaron tratamientos, mientras que más de la mitas ni siquiera consideró la idea de hacerlo.

Y estas fueron sus conclusiones:  

" El alto índice de falta de tratamiento mental en aquellos que sufren de discapacidad y comorbilidad es un problema de salud pública. Ya que Australia tiene un esquema universal de seguros médicos, las barreras que previenen cuidado efectivo deben ser el conocimiento del paciente acerca de posibles tratamientos y la competencia del médico tratante."

En otras palabras, hay mucho que hacer. MUCHO. Demasiado.

Otro estudio por SAGE journals anticipó en 2005 lo dicho por The Mental Health Surveys, solo enfocándose en la artritis reumatoide (RA). Casi 150 participantes, quienes padecían de artritis por variadas duraciones de tiempo. Los resultados fueron los siguientes.

Percibir la enfermedad como lo más cercano a tu ser puede empeorar la depresión y calidad de vida.

Conservar la calma tuvo, en efecto, un resultado positivo en aquellos que acababan de ser diagnosticados.

"El optimismo mejoró el dolor secundario  en artritis reumatoide de duración temprana y intermedia. Indicaciones de intervenciones dirigidas a la duración de la enfermedad fueron discutidas."

A veces, cuando los años pasan y tu vieja amiga artritis estuvo sentada en tu sillón por mucho tiempo, en serio puede convertirse en una carga pesada. Tanto que hacer, tantas cosas que ver y experimentar, solo para ser empujada por tu amiga-enemiga, que siempre está justo ahí *miro mi silla*

Pero no tiene que ser tan complicado. Tu cuerpo y tu mente son tal para cual, fulano y mengano no tienen que odiarse, o desconectarse de una manera que quitaría todo el control de tus manos. Tu mente y cuerpo no deberían pelear cada dos segundos, solo están tratando de conseguir el mismo objetivo: trabajar super duro para sobrevivir, y eso ya lo sabías. Yo lo sabía. Tus seres queridos también lo sabían.Así que hagámoslo por ellos, por tu y yo. Pero sobre todo, hazlo por ti.Ahora sin más preámbulos, aquí vamos! Top 4 Cosas Malas y Buenas de Mi Cuerpo.   Cosa Mala 1: Mi cuerpo es débil

Este solía ser mi mantra por seis años de mi vida. Solía repetir esto en mi cabeza como esas canciones pop que salen en verano. Ya tenía suficientes líos con la secundaria, tratando de sacar notas inimaginables y perfectas y cargar la responsabilidad de ser vista como Einstein o algo por el estilo. Todo el mundo me decía que yo podía sacar la nota que quisiera sin esfuerzo alguno.

El problema es que yo sí mi esforzaba, pero nunca quise hacerlo. Se entiende?

Seamos honestos con nosotros mismos. A qué niño le gusta estar sentado todo el dia, mirando post its de colores con datos para el siguiente ensayo sorpresa de Inglés la próxima semana? Ninguno! Ni siquiera yo ahora quiero hacer eso, incluso si soy una adulta. Casi.

Yo solo soñaba con entrar a la universidad, los días del presente un abrir y cerrar de ojos mientras yo tenía la mirada fija en la línea de llegada. Al menos logre un lugar en una universidad que yo a mi y disfruto con todo mi corazón.

Pero incluso al llegar, me sentía débil. Débil porque no podía sentarme en mi salón de audiencias cómodamente por más de una hora. Débil porque debía tomar una siesta en la tarde después de un laboratorio de tres horas. Débil porque no podía entregar el trabajo por que mis rodillas me dolían demasiado para sentarme en mi escritorio y prender mi computadora.   No te hagas eso a ti mismo. Por favor.

Cosa Buena 1: Mi cuerpo es fuerte

Piensa en la persona más fuerte que conoces. Probablemente es Dwayne the Rock Johnson así que utilicemoslo de ejemplo.

Dwayne es una persona enorme. Sus brazos son probablemente más grandes que mi pecho, y su pecho es probablemente más grande que mi cuerpo. El entrena un montón, come más que eso y siempre está listo para cantar en la siguiente película de Disney, pegarle a alguien en el siguiente blockbuster de acción o gritar en un baile Haka junto a grupo de niñas de diez años en un partido de football (por favor busquen eso. Es divertidisimo.)

Su vida es muy increíble, pero eso no significa que no tenga sus altibajos. Su infancia fue bastante intensa, pues esa un atleta profesional desde muy chico y siempre trató de mantener el legado de leyendas boxeadoras establecido por su abuelo.

Pero este 101 en la vida de Dwayne no se trata de él. Se trata de ti! Mírate! Tú también eres como La Roca!Tu lograste soportar que te dijeran que tienes una condición que quizá nunca te abandone y victoriosamente no tratarse de terminar tu vida. Tu básicamente de cuidas cual bebé todo el dia, todos los días, esforzándote para darle a tu cuerpo lo que necesita y evitar lo que no necesita. Tu haces y harás los sacrificios necesarios para asegurarte que tu y los que amas están seguros, bajo cualquier circunstancia.

Nos levantamos cada mañana, en dolor agudo, tratando de aventar nuestros cuerpos fuera de la cama y cojear hasta el baño, ducharse, cambiarse de ropa, lavarse los dientes, encajar nuestros pies dolidos en un par de zapatillas y salir por esa puerta por que sabemos que perderíamos la cabeza si no luchamos esta condición todos los días. Sabemos claramente que si no nos tomáramos la molestia de hacer todo eso en la mañana y no le mostráramos a la artritis quien manda, nuestras mentes colapsaría y perderíamos la batalla.Así que sigue luchando.

Cosa Mala 2: Mi cuerpo es raro

No hace falta decir que el típico cuerpo humano usualmente no se destruye a sí mismo cada vez que tratas de subir las escaleras (recuerden amigos: el primer paso siempre es el más difícil). Tu cuerpo simplemente no está diseñado para funcionar de esa manera, biología básica. Ahora, eso no significa que tu cuerpo sea tan básico como el pan blanco, pero tampoco significa que tu cuerpo es una abominación como las que salen en las películas de horror- o los que a las re justas sobreviven la película.

Mi cuerpo no es raro. Punto. Ya hablé de las personas que siempre se encuentran tan sorprendidas que yo puedo funcionar como la mujer productiva que soy, y también de aquellos que me miran con desaprobación en público. Bueno, que pena Susan, estoy aquí y también lo está mi condición médica! No pude apretar el botón de apagado hoy, muchas gracias.

Tu cuerpo puede hacer tantas cosas maravillosas. Puede cuidarse y a otros. Puede lentamente dirigirse a los lugares en los que tu debes estar, o caminar hacia ellos en los días buenos, o correr incluso en los días súper buenos. Puede hacer tantas cosas maravillosas, pero tienes que dejar de nombrarte a ti mismo la oveja negra. Cualquiera con poco de inteligencia no le importará que tienes que tomar tus pastillas a esta hora exacta, o que tienes que sentarse un rato de descansar.

Ten a tus amigos cerca, pero a tu enemigos más cerca. No enemigos, pero extraños confundidos. Enséñales a cerca de tu condición, educa al público de qué es la artritis y cómo nos pueden ayudar en el dia a dia (o sea, este blog!).

Cosa Buena 2: Mi cuerpo es interesante

Quizá es porque estoy estudiando para un bachiller de ciencia, pero la curiosidad nunca es tan mala como algunos creen. Tu cuerpo es en realidad fascinante para varios doctores y expertos de la medicina! La manera en que se comporta y sus muchos misterios son como un elegante rompecabezas, un enigma para que ellos observen y resuelvan.

Ahora, no te vendas a la ciencia, a menos que en serio lo desees. Encuentra dinero en otro sitio.Siempre me cuestionaba por que mi cuerpo se comportaba de este modo hasta que me di cuenta que lo que sentía, cómo lo sentía y cuando tenía constancia, casi de reloj. La manera en que tu cuerpo se opera a sí mismo es altamente interesante, investigar en el asunto no reventara su cerebro, pero te puede llevar a preguntarte algo o más acerca de tu cuerpo y de porqué hace lo que hace.

Quizá googlear o leer unos cuantos artículos de esto te ayudará en tu viaje con los demás. Pronto les enseñaré las mejores técnicas para investigar tu condición en un nuevo post!

Solo cierra tus ojos por un momentos y enfócate en cada parte de tu cuerpo, una por una. Piensa en algo bueno que todos ellos hicieron hoy: tus pies de llevaron a tomar desayuno en la mañana, tu manos sostuvieron tu libro favorito, tus ojos miraron una buena película, tu boca te ayudo a comer tu almuerzo, etc.Cada acción que parezca insignificante es increíble y debería celebrarse. Quiérete por eso!

Cosa Mala 3: Mi cuerpo es feo

El patito feo nunca se sintió tan feo. Ahora no solo tenía que lidiar con sus piernas gruesas que no entraban en esos horribles pantalones entallados, o el pequeño bulto que sobresale de su estómago donde, sorpresa, hay órganos importantes ahí! De repente, su baja confianza en sí misma también tomó un giro de 360 grados, pues regreso al mismo lugar, solo que en una perspectiva distinta. Su cuerpo ahora tenía otras razones por las cuales no era lindo, como las articulaciones anormalmente inflamadas, los dedos atorados como garras, o la constante sube y baja de peso que pasó por la falta de ejercicio.

La artritis y otras condiciones reumáticas a veces te hacen sentir terrible a cerca de tu apariencia. Cuidarla a veces ya no es una prioridad, o incluso puede ser desafiante. Tienes que elegir atuendos, usar zapatos incómodos, o no tener suficiente espacio en tu bolso o bolsillos (lo dire: los bolsillos de mujer son horribles!) para cargar tu medicina alrededor. El maquillaje también puede ser dañino para tu piel enrojecida por la inflamación, o tu cabello se podría caer por la medicina que tomes.

Y no hablemos de la rasuradora. Evitemoslo por nuestro propio bien.

Pero todos merecemos sentirnos lindos, al menos de vez en cuando. Ahora no me importa que me digan: puedo parecer un desastre pero de todas maneras me sentiré hermosa, todos los días. Porque mi cuerpo es mi casa, me cuida y yo lo cuido. Merece consentimientos y los proveeré de vez en cuando.

Cosa Buena 3: Mi cuerpo es hermoso

Ahora repitamos el ejercicio que acabamos de hacer, ahora abre tus ojos. Mirate al espejo, observa todo lo que eres, cada curva y cada detalle y imperfección. Di una cosa buena acerca de cada cosa. Mira esos ojos! Mira este peinado! Qué estilo! Mira esos hombros! Que fuerte! Y sigue asi.

El cuerpo de nadie es perfecto, y tratar de lucir listo para la portada de una revista todos los días no vale la pena. Pero por favor ten la oportunidad de probar cosas nuevas (o usadas) que te hagan sentir bien, lindo y con confianza todo el dia!

Así que si ves un vestido lindo que te gusta y lo puedes pagar, hazlo! Serás despampanante a donde vayas. Viste una camisa que te gusta y está a la venta? Consíguela! Te verás genial, tan cool.Pista: habrá un nuevo post acerca de tips de cómo encontrar y usar ropa adecuada para personas con artritis. Luchando con ese cierre cada mañana es un problema mayor! Detente!

Cosa Mala 4: Mi cuerpo no se va a curar

Como ya lo discute, nadie sabe por qué la artritis existe, y debido a eso, nadie sabe cómo se va y porqué. Quizá tenga que ver con el estrés. Quizá tenga algo que ver con las condiciones medioambientales o el estilo de vida. Quien sabe.

Pero eso no significa que debes perder la esperanza tan fácilmente. Si, algunos de nosotros han tenido esta condición por cinco, diez, quizá hasta treinta años, y sigue ahí. Pero el lugar de la artritis en nuestros cuerpos no es permanente, lo juro por Yuval Harari (uno de mis autores favoritos de todos los tiempos).

Puedes apostar todo lo que quieras que cuando menos te des cuenta, esta conocida sin invitación se desvanecerá, y tu serás libre al fin. Solo asegúrate de hacer tu trabajo y ser amable contigo mismo, tomar tus medicinas, comer saludablemente (al menos trata), haz algo de ejercicio, educate y a otros, ayuda a los que lo necesitan, etc.

Cosa Buena 4: Mi cuerpo se va a mejorar

Lo hará y lo está haciendo. Yas.

Yo a veces me siento abrumada por el balance que debo poner en mis prioridades y asegurarse de no sobre trabajar cuando me estoy mejorando de una crisis. La ironía: a veces trabajamos demasiado en mejorarnos. Leemos demasiado, investigando sin fin. Tratamos tantas dietas diferentes y jugos detox, esperando que uno sea la llave maestra de la artritis. Vamos a tantas cursos de yoga, tratamientos naturistas y muchas otras cosas más.

Estar emocionado de estar saludable es importante, es un buen comienzo. Pero no te aloques tratando de encontrar una cura que quizá ni siquiera puedas comprar o poner en un jugo detox. En vez de eso, confía en tu cuerpo. Sabe lo que hace, la mayoría del tiempo. Se sanará a sí mismo de la única manera que sabe cómo: comiendo, durmiendo, tomando agua, descansando y pidiendo cosas. Muchas cosas. Ya viene el siguiente post de cómo alistar un kit anti-artritis.

Mejorarse a veces parece una montaña rusa: a veces subimos, a veces caemos en picada de 20 metros en el cielo hacia el duro suelo. La gravedad es dura.Pero sabes lo que trato de decir. Las cosas a veces no son fáciles, y a veces no podemos controlar todo o saber qué hacer en ciertas situaciones. Por eso debes pedir ayudar. De tus padres o cuidadores, de tu doctor y de tus amigos. Construye un círculo protector alrededor tuyo para que siempre tengas a alguien sosteniendo tu espalda- a veces literalmente.

La artritis no es una caminata en el parque, pero otras condiciones reumáticas tampoco lo son. Son trabajos de tiempo completo que debemos realizar, pero no somos malos. No estamos enfermos. No somos débiles, feos, raros. Y definitivamente no vamos a sentarnos y escucharte decirnos eso. Porque tenemos cosas más importantes que hacer, y no nos podría importar menos lo que otros tengan que decir al respecto, o que digan de nuestro progreso. Sabemos lo que valemos y celebramos nuestros cuerpos en la mejor manera posible: tratándolo bien, con respeto, dignidad, amor y coraje.

Ama para que puedas amar. Nos vemos!

También me encantaría compartir con ustedes este grupo de familias en Kampala con niños con discapacidades en Ndagire Ritah @ritandagire76 en Instagram. Por favor copien y peguen su username y digan hola! Donen si pueden! Es por una buena causa!

[lucywithlupus]

Step 1. Apply makeup Step 2. Remove makeup cause summer Step 3. Repeat in 5 min what took me 45 min to make before and smile 

[lucywithlupus]

Quick thought/ Idea rápida

It has always facinated me the relationship that one establishes with their rheumathoid disorder. Sometimes is one of hate, resentment, peace, anger, sadness, dominance or vulnerability. Sometimes we share it with the world and sometimes we do not. Sometimes we stuff it into a box and hide it, even from ourselves. Do you have a name for your condition? What is it? Would you like to share in the comments? I used to call it JIA, or arthritis. Me parece interesante la relación que uno establece con su condición reumatoide. A veces es una de odio, de entendimiento, de paz, de ira, de tristeza, de dominio o de vulnerabilidad. A veces la compartimos con otros y a veces no. A veces la metemos en una caja, ocultándola hasta de nosotros mismos. ¿Tu tienes algún nombre para tu condición? ¿Cuál es? ¿Te gustaría compartir en los comentarios? Yo solia llamarta JIA, o artritis.

[lucywithlupus]

About me

Hello everyone! My name is Lucia and I am an 18-year-old Peruvian starting her first year as a biology undergraduate in London. When I was 13 years old, I was diagnosed with a rheumatoid condition known as Juvenile Idiopathic Arthritis or JIA. For years, I have struggled to understand and accept my illness, as I had to slowly learn how to adapt to the obstacles it presented in all areas of my life.

Being a teen and having a rheumatoid condition was, needless to say, a little bit isolating: when people thought of arthritis, it was difficult for them to understand me and my needs. I quickly learned too that virtual platforms on rheumatoid disease were heavily oriented to three main groups: elders, working adults and blog moms whose children were affected. There was no place where I could find tips and stories that I could relate to.

On January 8th, 2018, I got re-diagnosed with Systemic Lupus Erythematosus, my rheumatologist saying that arthritis has derivated into a new condition. I also got Hepatitis by medicine overdose, paired with a severe infection. That was the lowest my health had every reached; the closest I had ever been to death. But I sm grateful it occurred, as it showed me that my body is worth taking care of and that I should help others like me do the same.

Which is why I am very excited to start this journey with you guys and share with you some advice, hacks and daily shenanigans that happen when being a teen/ young adult with arthritis. I am not a rheumatologist, doctor or a health smartypants, so don't take everything I say to a tea. I am just a girl with a will to show you guys my life and how I go through it one joint creak at the time!

---------------------------------------------------------------------------------------------------------------------------------

Hola a todos! Mi nombre es Lucia  y tengo 18 años. Soy una peruana empezando su primer año de pregrado en biología en la universidad en Londres. Cuando tenía 13 años me diagnosticaron con Artritis Idiopática Juvenil o  AIJ. Por años, fue difícil para mi aceptar y comprender a mi enfermedad, pues tuve que aprender lentamente como adaptarme a los obstáculos que esta presentaba en todas las áreas de mi vida.

Ser una chica con una condición reumática es, en pocas palabras, un poquis solitario: cuando la gente piensa en artritis, es difícil para ellos entenderme y mis necesidades. También aprendí rápidamente que las plataformas virtuales para las personas con reumatismo estaban más que todo dirigidas a tres audiencias: abuelitos, adultos empleados y mamás bloggers cuyos hijos están afectados. No había un lugar donde yo podía encontrar tips y historias que me identificasen.

Por eso estoy súper emocionada de compartir con ustedes mi viaje por la artritis, mis tips y tonteras que ocurren cuando eres un chico o joven adulto con artritis. Yo no soy una reumatóloga, doctora, aficionada de la medicina o genio, así que no tomen todo lo que digo al pie de la letra. Solo soy una chica con el deseo de mostrarles a ustedes mi vida y como logro vivirla un dolor articular a la vez!

[lucywithlupus]

Top 10 Myths vs. Facts about Arthritis

Top 10 Myths vs. Facts about Arthritis

Thursday, January 17, 2019

Intro

Arthritis is the most common cause of disability in the United States. It affects 23% of the working population, almost 54 million people. And let's don't talk about the elderly population!

Everyone know arthritis exists, its unavoidable. But not many people know what it is or even acknowledge its existence in a regular way.

I was diagnosed with Juvenile Idiopathic Arthritis when I was just 13 years old. It was a very traumatic experience for an awkward preteen like me. Not only did I have to deal with the regular dose of cringiness that comes with high school drama, puberty and the discovery of Tumblr, but also this strange condition that I would have not thought of having in a million years was right there, standing at my door like that uninvited neighbour that will sit on your couch, expect to pamper and you just sit there waiting for them to leave.

Only that arthritis never left my side: it was there all day, every day, every single day for the last 6 years.

A short way of putting it, arthritis translates to "joint inflammation", and it is a symptom. You heard me right: arthritis is medically defined as a symptom. It is usually caused by an illness you currently have or had, but it could also present itself independently as a disorder.

In that case, arthritis is any disorder that affects the joints. Joints, being the area where two bones meet, are under constant friction when moved around. The joint capsule (joint sac)and synovium (joint liquid that lubricates the joints) can swell, causing stinging pain, visible swelling and pain, overall stiffness, redness, and limited mobility. It may also result in long term partial or generalized bone loss/ erosion and/ or cartilage loss. The best way I could describe it is having your knees be injected with jelly (ew) and the jelly squeezing your knee into itself everytime you want to get out of bed in the morning, or go up the stairs, or rush to that history class because you are late again.

An article by Social Science & Medicine explains that the characteristics of this disorder and what treatment is most appropriate to use really depends a lot of the time length since diagnosis- aka how long you had the disease-, the socio-economic and social background of the patient and the relationship between the patient and their disorder.

But why does it happen in the first place? As said, it could be another disease entirely isolated from your joints. But no one really knows why this disorder occurs to this day. Some suspect it is caused by genetics, environmental factors, stress, or none of them. No origin, no clear way to get rid of it, simple.

Being a teen with arthritis ain't easy, let's be real. I had to quickly learn how to survive my daily shenanigans as both a maturing, growing woman and handle my joint inflammation all at the same time. It was always confusing for others to realize that I had a medical condition that asked me for extra help every now and then. They also struggled to know what to know, how to react and what to expect. That's perfectly normal, but don't worry I gotcha.

Warning: I am not saying you do any of these nasties, but if you do or know someone who does, make you so send them this for some lovely PEP.

Links below :)

And now, without further ado, here we go Top 10 Myths vs. Facts about Arthritis!

Myth 1: Only old people get arthritis

When people think about arthritis, the first thing that comes to mind is probably your grandparents trying just a little harder to get out of their chairs. It has something to do with their joints, right? And most likely will never get better with time.

Telling people I have arthritis is like dropping an elephant right at their brains, and I can never know what their next move will be. Most of the time, they are shocked, surprised someone so young could carry such an elderly condition.

“Are you kidding?” “That is not funny” “Oh, interesting: you ARE serious”

It's understandable that human curiosity gets in the way of what is coming out of your mouth dear friend. But no, I do not appreciate you looking at me like a circus attraction, look at my knees in an awkward way or just stare into the sky asking the aliens maybe for more things to ask.

Instead, do like when there's fire: stop, drop, roll on the ground back and forth. Maybe not the last two but you get the point. Hold your queries train and be respectful at all costs. We could happily answer your questions without needing to feel attacked and you ignored. We do not owe you an answer, but place yourself in our shoes first beforehand, please!

Fact 1: All walks of life can get arthritis.

There is no scientific evidence that shows a correlation between arthritis incidence and age or sex. The only thing for sure is that osteoarthritis is most common in the elderly (age thee, folks), while other disorders like lupus are more common in young adults and teens (hint: me!).

That's the truth people: there is no such thing as a person that “looks” like they have arthritis. People with arthritis are big and small, tall, medium or short, old or young, fat or thin, thick or slim, work full time, study or not work at all. People with arthritis come from so many places, have different races, colours, hair and body types, religions, lifestyles, families, relationships, places they live in, places to go and places they won't go. People with arthritis can be disabled in other things, visually impaired, mentally challenged or ill, be missing a limb, be blind or deaf or have speech impediments. They have tattoos, some like to dance, paint and sing, others like reading books, watch movies or go outside. Some like pineapple on pizza, some don't (don't set this blog on fire people: make pizza, not war). Some chose conventional medicine, some chose alternatives or none at all. Just like you and me, there are so many types of people in this world, and some of the people you already know and admire are probably going through a rheumatic struggle right now and you never noticed. Arthritis has no shape, no stereotypical mould we follow. Isn't it amazing?

Myth 2: It's a disease.

Words have a lot of meaning, and for this reason, one must choose very carefully about how to talk about someone else's health, especially if you do not know them or what they go through.

Words like “sick”, “troubled”, or “ill” are incorrectly used to refer to arthritis. Sure, I am not going to stand up and run a mile as effectively as the nearest person, but that doesn't you the right to make me feel any less healthy, inferior or weak.

Criticizing my lifestyle and wellbeing choices, how I chose to medicate myself or whether or not I will try these ancient magical fairy dust your family kept buried in their backyard for generations is irrelevant, just like you judging my outfit today. My taste is exquisite, thanks.

So, if you feel inclined to stick your nose into people's property, think about how it would feel if someone had strong opinions about your daily choices. Because living with arthritis is that: daily choices we make to get by, just like anyone else.

Fact 2: It's a medical symptom or disorder.

Yeah, it's true. Not so exciting anymore, right?

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIH) defines arthritis as the symptom of joint inflammation, usually a symptom of something else but can also be a diagnosis of its own. It is also defined as a diagnosis of its own that affects the joins. Arthritis can cause joint swelling and pain, overall stiffness and limited mobility, redness and may result in long term partial or generalized bone loss/ erosion and/ or cartilage loss. This is because the joint capsule (joint sac)and synovium (joint liquid that lubricates joints) swell, causing a stinging pain.

So yeah, not a disease. Symptom or disorder it's just fine to thank you.

With that information in mind, maybe you can stop worrying about my business and start focusing on your next time.

Myth 3: There is only one type of arthritis.

Arthritis is an umbrella term to refer to any inflammation of one or more joints. That's it. But that doesn't mean things cannot get a little complicated or confusing.

There are many kinds of arthritis: spondylitis, gout, rheumatoid arthritis, juvenile idiopathic arthritis, reactive arthritis, psoriatic arthritis, osteoarthritis, etc. The list goes on.

The American Rheumatism Association (ARA) determined the criteria for rheumatoid arthritis diagnosis in 1956. The criteria were established by 5 committee members after studying 332 cases in 19 American cities. There are 11 original diagnose criteria to this day (links below!). There are three main possible diagnoses:

       ○ Definite: at least 7 criteria and 6 weeks of joint symptoms

       ○ Probable: at least 3 criteria and 6 weeks of joint symptoms

       ○ Possible: another set of criteria

The main indicator of an arthritic disorder is Rheumatoid factor (RF), which is basically the "good to go" lever that says with utmost medical evidence that you have arthritis. However, other indicators, treatments, and criteria are still sensitive, not specific, impractical and circular. Also, initial studies were mere surveys, misclassification ensued, incorrect tables and comparison squares were used to collect and analyze data, etc.

Over the last 60 years, medicine has developed a more uniform vocab, communication to allow for better comparison, teaching, diagnosis and awareness raising.

There are so many options! That's why we are everywhere, watching you. Have fun knowing that.

Fact 3: Rheumatisms are diverse and unique to all.

Even though arthritis might be looking more like a Wikipedia reference list right about now, it does not have to be ultra difficult to understand that rheumatic conditions like arthritis are incredibly varied and personalized to the patient's body.

Rheumatologists- aka joint doc- have a hard time finding cures and data and pills to give because of this reason. Remaining calm, doing your research on your type of arthritis and letting others know what it is and how they can help you is the best way to pull through!

Myth 4: We need help always.

I remember in high school and a few months in uni, I started calling myself grandma, and consequently, my friends did the same. I thought it was funny, laughing at myself and taking lightly something that I already had to deal with anyways. Plus, it matched my quiet (lie), caring demeanour (also lie lol).

A few weeks ago I realized that that may have been a mistake, as it makes others associate me with an old lady who constantly needs help: whether from doctors, my parents or family, my professors or my friends.

When you have limited mobility 24/7 and you are still a teen that heavily depends on your parents to drag you to your doctor- sometimes literally- give you your meds and scold you everytime you wish to do anything remotely fun, it can begin to build in your developing brain that fears of doing things that have nothing to do with your disease.

You fear to live your safe haven called home, loose that adventurous feeling to party hard and enjoy those sneaky teenage drinks and, deep down, fear for your plans of the future and how some of them might get chucked off your life forever just because you have a rheumatic disorder.

In high school, I used to hate myself for that. I hated myself and my body for not doing what I wanted them to do. To a point where I was delusional: I would tell myself that this was not my body, it could not be, my body couldn't be this weak and fragile. The boy was I wrong!

Also, don't get me started on how people think you are “faking it” because you want the attention and the extra benefits.

Sweetie, next time you (under highly mysterious circumstances) slip in my long list on how wrong you are and you roll down the stairs and break your ankle crying because you won't be able to go to Karen's party next week, call me. We will have some quality time together. Your petty butt, me, panadol and some good pep talk to hopefully make your brain work.

Truth 4: People with arthritis don't need help, always.

No one fakes being sick. No one is that insane, or persistent. Although things like stress and lack of care can worsen inflammation, no one is really faking the reality of the facts.

Sure, I do get help because I am disabled- yes, I am clinically allowed to use that term if I chose you, don't get triggered. That means I am allowed to take shorter queues in supermarkets, take special lifts, use the biggest bathroom stall. Thankfully, we live in a world were now electrical doors, ramps and tons of other aiding infrastructure is available for people like us and more :) Working, studying, medical, recreational, transport, industrial and domestic aid is stepping up its game on that area, and we haven't even talked about non material ways of help! (a new post!).

No friend. I do not need your help right now thank you. I appreciate you trying to bombard me with wonderful ideas on what I should or not do. I understand your concern and I am happy you are trying your hardest to help me. But maybe taking a chill pill and closing all those tabs, having a nice conversation and some tea is the best thing you can do right now.

I have the stuff to do, let's be real. We all do. I am a full-time student, but that doesn't mean I still don't have time to take care of myself and what my body needs. Years of experience have taught me a lot, and so will to you, dear arthritic friend. Things do get better :)

Myth 5: People with arthritis are lazy.

Now we travel to the other side of the spectrum:

“Well, at least you get to chill in bed when you want and get away with it! That sounds like fun to me!”

Yeah, if fun means having to attend blood tests, scans, doctors appointments, pill regimens, and regular checkups weekly, monthly or more in extreme circumstances. And being at home resting is no walk in the park either: you might need to get a higher shelf, you might struggle to fix your pill schedule, you might slip and die and no one will find your lying corpse (ok too much drama, I will calm down).

But yeah, you get the point. People with arthritis have the stuff to get done, sometimes double or triple more stuff that you have to get done on a daily basis. We are not lazy in any sort of way, but sometimes we do get overwhelmed and the need to chill for our own safety. Its normal, healthy and fun.

Fact 5: They are trying as hard as anyone else.

I am not lazy. Everyone that knows me knows I have absolutely zero chills. I enjoy working, shocker! I like learning, getting my stuff together, reading and doing all sorts of things. I also love taking care of my body, researching on how I can help it help me do the things I enjoy so much.

Yeah, I might need a little pushing around sometimes, but that is because of things I cannot control. My joints can have a crisis at any second, and you bet I will not roll on the supermarket floor in agony with my shopping bags when I can calmly proceed to the disabled people line and avoid everyone some trouble- including me.

So please, if you see someone not standing up for the old lady on the bus, do please find her another seat because I can't stand up right now. Work those legs and offer your own seat!

Myth 6: Their problem, my problem.

Living in a time where your private and virtual life constantly overlaps is exciting, but also means that what we perceive as private gets a little blurry.

Again, the whole fairy dust story. This time, a mist of sprinkles and cupcakes or pain and misery blinding you, not letting you perceive reality as it is. Yes, we are getting Neo up in here.

When you tell people you have arthritis, the immediate shock leads them to a very natural place: survival mode.

"You should try this or that!" "Have you considered this? It has Oprah's recommendation, so maybe it will work." "Maybe God is trying to tell you something, better get to work."

"You must be feeling/ perceiving/ doing/ acting/ treating yourself this way. It's the best way!"

There is no such thing as the best way. Scientifically speaking, there are so many ways to treat arthritis, and with all the criteria, surveys and medical information available, it is completely impossible to say to full certainty which of these treatments is actually the best. Maybe Oprah's works for her and some of her fans, but it may not work on my body, and that's ok too. I don't need to feel disappointed that I failed Oprah or anyone, or angry that my body did not react the way it was expected too. I have enough issues to work through already!

So before you aggressively google "how to cure arthritis asap", stop and think about other healthier ways you can vent your worries and actually help us with things we need every day.

Fact 6: Their business is their own.

Ok. This is it. This is the end. In the words of Freddy Mercury, "I don't want to dieeeee, Sometimes wish I'd never been born at all". *epic guitar solo*

You have Arthritis, the Big A. And you have to learn with it and fast, God knows for how long.

Formulating a plan of attack right now may not ease your inner emo right now, but don't sweat it.

Arthritis is no piece of cake, at least it will not be in at least a couple of years. You slowly build habits and coping mechanisms that make those creaky joints just a little better to grip.

So do not come to me with a Shakespearean monologue on how devastated I should be, how my life is over, or worse: how miserable you are for living the unimaginable tragedy of having a disabled buddy. What an incredibly sad event man! How brave of you! I will attend your funeral.

But dress code: facts!

Myth 7: They must be miserable or boring.

Unfortunately, as do other medical issues, arthritis falls under phenomena called invisible illness. These are like those angsty preteens always standing at a 45-degree pose in the school lockers: cold, mysterious, and most of the time unseen. No one bothered to understand them and preferred to go away and check their snapchats streaks as they scoot by.

Arthritis sounds dark and spooky, but I am not sad all the time because of that. Heck, I am sad that my toast gets burnt in the morning, not because I have a life-threatening condition that may or may not stay with me forever! Priorities, people.

I had a hot minute to consider what is important enough to worry about in life. It's part of growing and learning how to cope with this disorder.

So please do not remind me of how sad I must be feeling, or how disappointed my family and friends must be. I am no burden to them, no burden to me and no burden to you, lovely sir. Respect that.

Fact 7: We are fun and approachable.

The angsty teen could have never flowered into a beautiful butterfly goddess without the help of self-worth and friendship. Let's be friends! Let's go out, grab a coffee, talk about the latest gossip or Instagram challenge, watch a movie, a party (with moderation kids), talk in the phone, etc.

Arthritis is hard, and sometimes being open about it with other people your age can be challenging and a struggle. But maybe you can take the lead and show us how fun life can be. Who knows: maybe a lovely friendship will flower.

Myth 8: They must be ultra freaky about everything.

I might not be the most "normal" person in the world, but I am no freaking dinosaur, ok?

Yeah, I take pills, measure my temperature, cancel plans and then remake them because of crisis periods, sit down for a little longer than the average human, etc.

I am not weird or freaky. Sure, I enjoy indie and pokemon soundtracks, but that is aside of the point. We are not here for your entertainment or mean comments about our medical condition.  We do not appreciate being so rudely excluded just because you think you discovered the next cure for cancer or something when looking at us take paracetamol.

Truth 8:  Who wants to be, really?

Relax pal. You will continue your Black Mirror analysis of my life later.

We are just trying to get by. Mean looks or side glances will not help in that process. Get to know us a little better first before putting a magnifying glass at our faces!

Myth 9: They must take huge amounts of commercial medicine.

Warning: I am not your doctor. No degree, no genius, no Jesus. You have been warned.

This is a very touchy subject so bear with me. Whether we take commercial meds is our business. The most common treatments for arthritis are ibuprofen and paracetamol. These divas could be complemented or replaced with a million different treatments, like other medication, natural treatments, nutritional supplements, meditation and diets, surgery or biological agents. The list is literally endless.

How someone chooses to treat themselves is their or their caretaker's concern, not yours. Do not suggest a million treatments at once, you are just confusing us even more!

Commercial medicine is neither good or bad, as long as your doctor or specialist is aware you are taking them. Period. Debate over.

Fact 9: Not necessarily.

Look, guys, it's getting late and I am very lazy right now. I am not about to name and explain every single possible you could take or follow, and I am not going to tell you which is best. Life ain't fair.

Just follow the one you, your caretakers and your specialist see fit. You will have plenty of time to experiment in your own time.

Myth 10: They are all the same.

Short answer: NOOO!!!!

Done.

Fact 10: Shush and listen.

This post is already hella long so I will be short and sweet.

You have ears, use them. Perhaps they are attached to your brain, and your brain has wiggles called neurons, right?

Listen to us arthritis folk. You and we might be amazed by how hardworking, brave, happy, smart, funny, witty and overall badasses we can be if we stick together.

Like Troy Bolton said so gracefully, "this is the last time to get it right, it's now or never". To most of us, that is literally a fact. Enjoy life, what it gives you, what it doesn't and learn to listen.

Listen to your body, to your mind, to others and, most importantly, to yourself.

Aaaand that's all folks! I hope I did not roast you in a permanently bad way or made you feel sad or shocked. Thanks for dropping by and I will see you with future posts!

Links and comments below babies :)

Bye!

References

(1) Yukinori Okada. Genetics of rheumatoid arthritis contributes to biology and drug discovery. Nature. 2013; Available from: https://www.nature.com/articles/nature12873 .

(2) Versus Arthritis. What is arthritis? Available from: https://www.versusarthritis.org/about-arthritis/conditions/arthritis/.

(3) Centers of Disease Control and Prevention, (CDC). Improving the Quality of Life for People With Arthritis

At A Glance. Available from: https://www.cdc.gov/chronicdisease/resources/publications/aag/arthritis.htm.

(4) Frank C. Arnett, Steven M. Edworthy, Daniel A. Bloch, Dennis J. Mcshane, James F. Fries, Norman S. Cooper, et al. The American Rheumatism Association 1987 Revised Criteria for the Classification of Rheumatoid Arthritis. American College of Rheumatology. 1988; Available from: https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.1780310302 .

(5) Dennis Gray. The treatment strategies for arthritis sufferers. Social Science and Medicine. 1985; 21 (5): 507-515. Available from: https://www.niams.nih.gov/health-topics/arthritis .

(6) National Institute of Arthritis and Muscoskeletal and Skin Disease, (NIH). Arthritis. Available from: https://www.niams.nih.gov/health-topics/arthritis.