Article

Pick You Battles

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Hank: (walking in the house from school, coat and backpack still on) Oh my gawd, mom, you will never believe what happened at school today.

Me: Spill.

Hank: So I was in the library and this 6th grader who had missed school was in there to take an exam and he cheated on the whole time! Like through the whole test!

Me: Cheated how?

Hank: I saw him. He was googling the answers.

Me: Huh.

Hank: Normally there is always someone with you when you take a test, but for some reason, I don’t know why he was given the test and left alone so he just used his phone. I mean, I told the librarian, but she said his teacher knew what was going on and not to worry about it, but my friends and I were, like, so upset because that wasn’t right. He should have studied.

Me: Agreed, but Hank, you don’t know the situation. You informed someone of your concerns and that is all you can do.

Hank: I was thinking of speaking to someone else tomorrow. I mean, it isn’t right!

Me: Was the boy physical harming himself or others?

Hank: No.

Me: Was he destroying property?

Hank: No.

Me: Was he creating an unsafe or disruptive environment?

Hank: No.

Me: Was he intentionally spreading a highly contagious communicable disease that could decimate the population?

Hank: Mom!

Me: Hank, you did your policing; you informed an adult and that is all you should do. I know you are a rule follower, but not everyone is like you. In life you will meet people who haven’t earned their place in the world and that isn’t fair, but trust me, that boy will suffer later if he doesn’t know the information on that exam. His laziness will cost him in the future, so there is no need to be a vigilante.

Hank: I just think it is unfair.

Me: Life isn’t fair.

Hank: But (pause)…

Me: Is that boy your friend?

Hank: No, he’s a sixth grader.

Me: All the more reason to not take this further. It isn’t your business, you informed an adult of what you saw and now his cheating is between him and his teacher.

Hank: (frustrated sigh) But why didn’t he just study?

Me: What if he did, but in being left alone he was far too tempted by his access to the internet to prove he knew the material?

Hank: I would never do that. I would never cheat.

Me: And I respect your decision, but no one is asking you to police your school and prosecute wrongdoing. Are you Batman?

Hank: Mom, no.

Me: You did the right thing speaking with the librarian, but you also need to trust the adult you informed to handle the situation further. Only in cases of marginalization, neglect, abuse, violence, impending doom and or natural disaster do you push forward.

Hank: But it’s wrong.

Me: I agree.

Hank:

Me: Okay, I will tell you a story. A couple of years ago I had to get a blood draw and that blood draw had to be sent to Porto for analysis. It was arranged that I would just pop into the pathology lab at the hospital at the earliest appointment possible and dash in, have my blood drawn and dash out. It was all arranged. So I show up and I am the first one in line, but I didn’t have the same paperwork as the other people waiting in line so they assumed I was cheating and jumping in front of them, but I wasn’t Portugal people with certain illness, diseases and ages get to the front of the line.

Hank: Like babies.

Me: Exactly, but I didn’t look like I fit the criteria to jump the queue so a group of people, men and women, started demanding they see my appointment card and when the techs and I explained the situation and that I had priority because of my RA/AS they didn’t accept our answer and got rowdy and loud and accused me of cheating, saying I was lying and was probably a doctor’s daughter and being given special treatment.

Hank: That is so rude.

Me: Exactly! Then someone went and got a security guard and he got involved and questioned the techs and I again why I was jumping to the front of the line.

Hank: But you weren’t jumping.

Me: Yes, but the people assembled weren’t listening and decided to police the situation to get justice for being the second, third, fourth and fifth people in line instead of simply being one spot higher up the chain. It got so bad that the men that had their blood draws just after mine even walked behind me and insulted my limp and accused me of faking it for sympathy literally all the way home. They followed me to the door of our building loudly heckling me and accusing me of being a liar.

Hank: I think I remember this. You were so upset.

Me: I was and here’s the thing: I wasn’t upset when they raised their concerns in line, but I was mortified when they took their policing of me to the security guard and then to the streets. Even if I was cheating, which I wasn’t, was it all necessary? They had made their poor opinion of me and the situation known, they spoke with staff from the hospital and then with security, but in the end took it too far.

Hank: YES!

Me: Do you understand what I mean now about being a vigilante? There are a precious few moments in life when it is necessary to interfere, but there are far more small moments where it isn’t and your interference will be more harm than good.

Hank: Okay. I understand what you mean now. I don’t have to like the cheating, but I did what I could and I don’t want to take it too far.

Me: Exactly. Pick your battles, Hank.

Hank: I should save my battles for when I am needed.

Me: (nodding)

Hank: Okay, I understand now, thanks mom.

Me: Thank you.

Article

Aleijado (Crippled)

conversations with hank harry potter ankylosing spondylitis #spooniememe #ankylosingspondylitismeme

 

(over dinner)

Hank: Mama, are you not hungry?

Me: (drinking my second serving of soup from a mug, using two hands) No, I am hungry and this mushrooms soup is delicious.

Hank: But you don’t want any of this nice food you made? Just soup?

Me: (debating whether to lie or be honest, choose honesty) I had to take some paracetamol and now my stomach hurts. I used my hands too much today and I can’t use a knife and fork anyway, so I am very satisfied with soup and bread.

Pai: (wincing)

Hank: My friends at school ask me why you’re, you know, aleijado (crippled). They see you walking around town and they always ask me. I tell then it is your disease. I say, “She has a disease called Rheumatiod Arthritis and one I cannot pronounce.”

Me: Ankylosing Spondylitis.

Hank: I can’t say that.

Me: If you can say Tyrannosaurus Rex you can say Ankylosing Spondylitis. Think of it like a Harry Potter spell (adopting a British accent, using my swollen hand to arthritically spell cast) Anka-low-sing Spawn-dow-light-us!

Pai: Espondilite Anquilosante (Ankylosing Spondylitis).

Hank: But the Rheumatoid Arthritis is what causes your pain.

Me: No, they both cause chronic pain.

Hank: But you um… coxear (limp) because of the pain?

Me: My left hip and pelvis are fusing together. When I only walk short distances I don’t really limp that much but when I walk for longer than a city block my hip gets really stiff. I don’t limp because of the pain I limp from stiffness caused by Ankylosing Spondylitis.

Hank: Oh, so what is the Rheumatoid Arthritis?

Me: Cheat sheet to what is going on with me as of now: my neck, back, hips and pelvis are Ankylosing Spondylitis issues. My feet…

Hank: Oh yah, your feet hurt all the time! That is why you walk around barefoot in the winter on the tile floor.

Me: Right, because it is the same as icing my feet when they are burning with pain.  Cold helps lower or sooth inflammation. The Rheumatiod Arthritis issues are my feet, ankles, knees, shoulders, elbows, hands and sometimes my jaw.*

Hank: I don’t know what inflammation is.

Pai: Inflammation is a biological response to harmful stimuli. With your mother’s diseases her immune cells confuse her joints and other parts of her body as harmful and attack them. That is where her pain comes from.

Hank: Oh, so right now you have to be careful because your hands hurt so that is the Rheumatoid Arthritis?

Me: Yup. I over did it today and now there is so much inflammation in my hands that it is very difficult to make them preform properly.

Hank: And inflammation means pain. Your hands hurt.

Me: Pain and swelling in my hands make it hard to preform fine motor skills like cutting food with a knife and fork and not dropping that fork on they way to my mouth.

Hank: SO that is why are drinking your soup and not eating it with a spoon.

Me: No one every called you dumb, not one day! It is also why I took a paracetamol. (attempting to change the subject) This soup is very good if I do say so myself.

Pai: I love your mushroom soup.

Hank: It was really good, mom, but will you be okay tomorrow?

Me: I am okay right now.

Hank: But you’re in pain!

Pai: Hank, your mother is always in pain.

Hank: Not always.

Me: (deep sigh, loving that he didn’t know) Always: Every day, all day, when I wake up until I go to sleep without fail I am in pain. Some days more than others, some places in my body more than others, but always in pain.

Hank: But…

Me: But I laugh and sing and joke and work and refuse to stop living my best life because of pain. My life is too good and it is amazing how people are able to adapt. I am so used to pain by now it is just something in the background. Don’t worry, buddy.

Hank: I didn’t know it was all the time.

Me: That is because I am too busy having fun and enjoying every second of my life. I am not going to let a little thing like pain stop me.

Pai: Hank, don’t worry, your mother in is good hands and listens to her doctors and is…

Me: As well as possible. I am as well as possible and my attitude makes me even better! So you can tell that to your friends that when they’re curious about your mãe americana tonta e aleijada (silly, crippled American mother).

Pai: You can tell them she is unstoppable.

Me: (smiling, sipping soup, feeling loved)

Hank: They all think she is the coolest, anyway. They all want to go Casa de Memória and make pottery with her and they are all jealous that she can make brownies any day I ask, even better than at cafés or in the store, and she is funny and you are, mom, you’re really funny. I guess they just aren’t used to your walking.

Me: That is it exactly. Thank you for helping your friends understand.

Hank: Thank you for helping me understand. (stuffs his gob with salad)

Me: (cautiously raise my mug of soup to my mouth with two hands)

Pai: (winking at me)

Me: (winking back)

 

*Before those of you educated about RA/AS say anything, of course I know RA also affects my organs and my eyes.  Although I choose to be honest with Hank I also don’t want to scare him.  He’s ten.

Article

World Arthritis Day 2017

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(Backstory: I have been trying to come up with a way to participate and raise awareness for World Arthritis Day 2017 and then a few days ago this Conversation with Hank happened and I had my answer. In Portugal there are a large number of apartment buildings whose ground floor are commercial plazas. Picture an indoor strip-mall consisting of local businesses such as: clothing boutiques, cafés, photocopy stores, electronics, a small groceries and hair and nail spas. This conversation partly takes place in a commercial plaza that was built before Portugal adopted laws mandating buildings to be handicap accessible.)

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Hank: (holding the door open for Molly and I as I push her in an overburdened umbrella stroller with multiple bags draped over the handle + a toddler leaving her Nanny’s apartment)

Me: Thank you, kind sir.

Hank: So where should we go to have our lanche (late afternoon snack)? You’ve never picked me up from my new school before now that I walk myself and we haven’t found our lanche (snack) spot yet.

Me: Well, we have to be strategic. (pausing as we come to our first ramp which is very steep and not a wheelchair accessible incline, therefore knowing I will struggle to safely glide Molly’s stroller and myself down with my hip mobility issues due to Ankylosing Spondylitis)

Hank: I will stand at the bottom to catch the stroller.

Me: (frustrated giggle) Thank is kind of you, buddy, but who will catch me? (pitching us down the ramp precariously) Jeesh. I think these ramps are for deliveries and dollies. They are for sure not for people. Now I see why Molly’s nanny goes out of this building through the garage when they go for walks.

Hank: Okay, so back to the café question.

Me: The mitigating factor is I would rather walk out of our way home than up one of the intimidating hills of this neighborhood to our neighborhood with this stroller, so we will have to pick a café along the long loop home… (pausing at the top of another non handicap accessible ramp, this one ending in the non-opening side of an automatic sliding glass door) You have got to be kidding me!

Hank: Okay, look here, mama (taking the steps down leaving Molly and I at the top). Before ramming Molly into the glass you can pivot and bring the stroller down here like a step. Okay?

Me: (executing Hank’s plan of attack) I should have consulted Adriana (Molly’s Nanny) about the best way to leave this building before our goodbye kisses! Argh.

Hank: (leaving the commercial center and gliding down another flight of five stairs to the sidewalk) Okay, so to finish, are you saying we are going to pass by…

Me: (stranded at the top of the flight of five stairs, searching for an exit ramp and finding none exists)

Hank: (from the bottom of the stairs, noticing) I’ll come back up and help.

Me: Thank you, Hank. (together we manage to half lift, mostly bounce Molly, her stroller, her day bag, Hank’s gym bag, my tote bag and me down the short flight of five stairs)

Molly: Whoa! Whoa. Alllllllll Done.

Hank: Whoosh! That was so much work!

Me: Just to leave a building. Look around, Hank; there is no handicapped accessible entry that I can see in or out of this building. I guess I can’t buy the apartment for sale here like I was considering.

Hank: I never thought of that before.

Me: (starting our walk home) I think about these things all the time. I always have to make decisions about how much strain I put on my knees, my hips and my feet because of my Severe Rheumatoid Arthritis and Ankylosing Spondylitis.   I make choices all day long based on what an activity will cost me in three areas: energy, mobility and pain. Some days just five stairs are enough to make my knees inflame and burn for 24 hours and there is no relief.

Hank: But we have five steps to get into our house.

Me: Ten.

Hank: No…

Me: Five steps to get from the street into our building or the garage to our elevator, so either way there is no handicapped accessibility because there is no ramp and then there are five steps from the landing into our house, therefore if I want to leave the house I have to decide if I am able to spend what it costs in mobility, energy and pain to climb and descend 20 steps just to leave and return.

Hank: But you said five steps make your knees burn.

Me: That is correct.

Hank: So like, no matter what, if you leave the house your knees will hurt for the rest of the day.

Me:  And the next. Thank you for listening and understanding.

Hank: But going down is easier than going up.

Me: So you would assume, but no. It all has a cost. Everything I choose to do in my life at this time has a price, even lying down! Even following my doctor’s orders of limited mobility has ramifications. I eat a healthy diet, but because of my recommended activity restrictions at the moment I live with weight gain. It’s not much, but enough that I notice and my vanity and joints don’t like it.

Hank: But you can swim, right?

Me: According to my primary doctor yes, according to a specialist second opinion no and to go to the pool to swim requires:

  • 10 steps down to leave the building
  • Walking five blocks with a hill or holding my elbows above my waist, which is very painful, to hold the steering wheel and drive the five blocks to the pool
  • Getting undressed
  • Getting dressed in a swimming suit
  • The activity at the pool
  • The shower after where I have to raise my elbows above my waist, which is very painful, to wash my hair and the bending to wash the chlorine from my body
  • Getting dressed
  • Walking five blocks home with a dramatic decline or raising my elbows above my waist, which is very painful, to drive home
  • Ten steps up to the apartment.

Every activity in my day costs me three things. Do you remember what they are?

Hank: Um, energy, um… moving… mobility and pain.

Me: With my two forms of inflammatory arthritis as of now if I completed that list to get to the pool which could be beneficial in shedding the 5 kilos (10 lbs) I have gained this year I would pay with two solid days of intense pain, I would be house bound and mostly in bed and unable to be with you and Molly and papa. For now, I choose quality time with my family over weight loss and try to be a little more forgiving of myself when I don’t like the way my clothes fit when getting dressed in the morning.

Hank: Mom, I have a question.  I think about this a lot actually.  Why are there no medicines to help with your pain?

Me: There are, but they are very strong and have side effects. Eventually, I will ask for pain management drugs, but I want to wait as long as possible. I have the life style, freedom with my work and a very supportive and understanding family where I know I can take this walk, pick you up from school and Molly from her nanny, enjoy this lovely fall evening, have a treat in a café, navigate that ridiculous centro comercial (commercial plaza) back there and tomorrow lay flat all day. I can rest and stay quiet until you and Molly get home and save my energy to spend time with you two and your papa. It isn’t easy making this choice. My world has become very small and consumed by calculating what I can and cannot do to manage and maintain the level of pain I live with and to not raise that level to where I can’t cope mentally.

Hank: That is a lot to think about.

Me: Thank you for acknowledging that, it is, yes, but it is my choice. Making the choice to live with these two degenerative diseases and at this time not take pain management drugs makes me feel powerful and in control. This will change and evolve as my diseases progress or stabilize, either way and  as things change I will find other ways to feel powerful. I will also find other tools to help my quality of life and aid my mobility.

Hank: Like a wheelchair?

Me: Yes, or a walker when I can’t lean on Molly’s stroller anymore.

Hank: When I get my first apartment I will only ever live in a building that is accessible. It will be like on House Hunters International! I will go to the imobiliária (real estate office) and tell them how many bedrooms I want, what my budget is and that I have to have an apartment where my mama can visit me.

Me: And I will walk or wheel through the front door on that day and be so very proud of you while also feeling very loved and respected.

Hank: Right, so the café?

Me: We are close enough to our very favorite café in town that I think the extra cost to visit it is far worth the price.

Hank: You read my mind all the time!

Me: Clarinha’s it is!

Hank: Yes! And mama, how are you doing? Do you need me to push the stroller? Can I help?

Me: (leaning on the stroller for mobility support) Just asking was all the help I needed, thank you.

Molly: (exhausted from her day at play, blissed out in her stroller, eyes heavy)