End of Summer

I had my surgery, my long relaxing summer full of time spent curled up on a bed, binge-watching DS9 and Property Brothers, taking walks with my twins, chasing kids at the park, spraying them in the backyard with the hose, watching the birds fly and the rabbits leap, listening to the random sounds of fireworks and concerts in the cooling dark. 

This is the healthiest I've ever felt. Most of the pains I had before surgery, and all of the mental issues I had, they're all gone. Menopause at 31 hasn't been the easiest thing in the world, but after cutting out caffeine and chocolate I can definitely say it isn't the hardest thing, either.

I'm just content. Happy. 

The year is revving up again. The kids are going to school. Backpacks are strewn around the living room downstairs, waiting for me to fill them up with shoes, lunches, clothing changes, wipes. There are forms to sign, fundraisers to pay for, coats to hang up. I couldn't be happier. After a year of sitting on the sidelines I'm finally right back where I want to be, in the thick of everything. 

My life is amazing. I can do anything I want to. 

I can take long walks with my girls in the stroller, and then play with them for an hour in the park. I can chase my son all round the house, and still have energy to cook dinner and put him down to bed. I can kick back at the end of an exhausting day, watch a few episodes on Netflix with my husband, and then go downstairs and push through with one more burst of energy to get the house cleaned before bed. It hurts, but I love it so much because I can do it. I can finally just be a part of my family again. 

It's so odd that right now the only thing that's really standing between me being here and be not being here is chance. The chance of not catching just the wrong virus, or just the wrong bacteria, or just the wrong fungal infection. That chance I have of cancer. The tumour growing in my mouth. 

It's almost like a form of doublethink. I'm healthier than I've ever been, but at the same time I'm still "sick". My CD4 is still less than 100. I have to hold both thoughts in my head, always being aware. Don't eat sketchy raw things, don't eat raw veggies if you haven't washed them yourself, don't swim in fresh water or pools, heck, don't swim at all, don't drink water that hasn't been treated, don't go camping, wear a mask or walk away when around sick people, things like that. 

When my son was less stable he used to be like a knife, balance on the edge at the top of a cliff. Any one small movement, a puff of wind, used to tip him over, throw him into the hospital. I'm older, I'm a lot more stable than he was, but I still need to remember. My life is amazing now, and I want to work hard to keep it that way. 

And, as healthy as I am now, the winter is coming. The Winter Is Coming. Seriously. 

So here I am. Summer is ending. The end of my carefree, joyous days. The end of being able to just open a door and run outside without doing anything at all. No shoes, no coat, no mask. No worries. Just clear blue skies and a lot of freedom. But at the same time, it's ok for summer to not last forever. Life has to keep moving on. How can you live if you don't enjoy the passing moment? 

Juxtaposition. Two contrasting thoughts. Enjoy this moment, because it won't ever come again. This too shall pass. Insert random cliche. Don't take yourself too seriously. Just keep trucking. 

And above all, enjoy life. I know I do. 

Sunlight and Surgery

Every day I'm out walking, enjoying the sunshine, exercising, building up stamina and endurance and happiness... because in two weeks I'm losing a bunch of reproductive organs that I don't really need anyway.

Here are some little known facts about Lady Issues and ICL:

ICL is weird. I have crazy mood swings (which you may have noticed, if you read the back and forth posts on this blog) which are actually clinical and hormonal, and only last for a couple of days (aka PMDD, which is unrelated to ICL). But ICL helps to limit my options for controlling my hormones. Not being able to use an IUD (infection) or Lupron (drug interactions) is annoying. This also interferes with controlling my weeks-long periods (For the record, the other factors are blood clots and migraines).

ICL (with low CD4) can also give you a really significantly increased risk of cervical cancer. High enough that my doctors just recommended we take it out (apparently you can also have pap tests every 6 months, if you really want to keep it). Also important, is that getting cervical cancer is not as trivial as in the general population. It's more serious and generally more fatal in ICL patients with low CD4 counts, even if you catch it early. So cervix =/= happiness. 

ICL-related meds like Septra and fluconazole, and really a lot of broad spectrum antibiotics and antifungals, have QT prolongation as a side effect. So do certain long-term Lady Issue meds, like Lupron. Since it probably won't be the same doctor prescribing both types of medications, it's a good thing to keep in mind. Also, since many broad spectrum antibiotics aren't compatible with pregnancy (except dapsone), you should consider making sure you (or your ICL patients) are on long-term birth control or have a good pregnancy plan. 

Why am I even posting this, because I am not a doctor or a nurse or in any way qualified to give health care advice and please don't listen to what I'm saying without consulting your own physician/ if you are a physician I have total confidence that you are going to verify what I'm saying just in case I'm totally wrong? Well, because Rare Disease that Usually Strikes Males Over 65, that's why. And because, despite having access to the massive wealth of HIV information out there, I didn't actually find out any of this until we were making a surgery decision. 

In the meantime, I'll be spending time walking in the sunlight and lifting far, far more than 10 lbs and eating whatever the heck I like. Hopefully this time I will not get a 7 day paralytic ileus which is finally resolved by a case of C. diff. 

That's what I call an.. 

*puts on sunglasses*

opportunistic infection. 

Oh, yeah. 

*Walks away*

Bittersweet

Sometimes the fight without becomes less important than the fight within.

Sometimes the silence is harder to take than the noise, because the thoughts that occupy it are so poisonous.

Sometimes my biggest battles are inside my head, because being positive is an active thing and to be honest? I'm really not very good at it.

Sometimes all of this fighting and battling and setback after setback and turndowns and roadblocks have me struggling more not to become a horrible person than to actually make life better for my family.

I need to be positive. I need to think positive. I need to not become this bitter, hateful person that is constantly in battle mode, feeling anger towards the unfeeling bureaucracy that cares more for budgets than special needs children.

We lost every non-medical pediatric service we had access to in the last month, except one. And that one is now officially up for review. Not because we're not in need, not because we're not eligible, but because the government is slashing the budget very, very harshly across the board and the cuts need to come from somewhere. We are not on the extreme end right now, and we are no longer in crisis, so we are getting cut.

I'm trying so hard not to become bitter, but I'm failing. I fought tooth and nail for every single one of those services. Now they're gone, and it feels like all of my work was for nothing. Nothing. I'm trying so hard not to dream about it at night, but I can't. How do I live with this? How do I live with the fact that no matter what I do, no matter how hard I try, no matter how much effort I put into it, I cannot fight this? That it feels like a parallel for fighting my body, fighting myself, a constant reminder that you can give it everything you have, everything, but if a force more powerful than you wants something more than you, wants something different than you, then you will lose and lose hard every time?

I'm being maudlin, I know. Tomorrow I will have more energy, tomorrow I won't feel this bad. I'm sure there are positives right now, even though I can't see them through the dark.

I think I just ran out of fight.

Ode to Spring

It's finally here!!!

I've been waiting for this! It's springtime! It's amazing, it's beautiful, it's freedom!

This is, quite honestly, the first time I've ever felt like this during spring. Like the whole wide world has opened up to me, like I'm throwing off the bonds of everything. I have a lightness in my step, and new energy in my heart. I'm no longer trapped inside my house, or trapped by the snow, or trapped by the legions of coughing/sneezing/contagious people roaming all of the indoor shopping areas.

Now when I want to escape I can just throw on a pair of shoes and a hat, chuck the twins in a stroller, and go. We can go to the park, we can go to the store, go grocery shopping, go grab a coffee, go in our own backyard, or just go around the block.

I'm also starting to get fit again (just in time for surgery! Ha ha! Sigh.). But still, it's nice. I'm making an effort to work out again - just walking a couple of kilometres every day, doing my yoga, playing with the kids. It's been a long time.... a really, really long time.... since I've ever had the spare energy to want to or even think of "working out". It's really incredible to me how different my life is right now, compared to how my life was a few short months ago.

It's the weather, it's the new medication, it's the new vitamins, it's the sunlight, it's not having to be afraid of going out in public, it's not catching something every time I leave the house, it's being able to leave the house whenever I want, and being able to walk outside for reasons other than visiting a hospital. It's not being sick all of the time, it's being healthy enough to walk up the stairs holding one or two kids and not break a sweat, it's being energetic enough to clean my living room and not want to take a nap afterwards, and still have fuel to go go go and keep going all day.

It's wonderful, it's glorious, it's fantastic.

It's spring and almost summer!!

And I intend on enjoying every single minute.

Lag

Lag is a term for when the time is takes for two internet servers to ping (or contact) each other takes too long. We use it a lot; jet-lag, getting lagged, feeling lagged.

Something has been happening recently in appointments of mine.

My doctor has something really, really important to tell me. It's going to change my life, I can tell. The air changes, solidifies, thickens. The doctor pushes their chair back, moves around the side of the desk, leans forward with their elbows balancing on their knees. They stare at me, dead in the face, taking a deep steading breath. I know something is about to happen, I know they have something to say, and I can tell by the tears balancing in their eyes that I am not going to like it. 

The moment comes. With another deep breath, my doctor reaches out, and speaks a sentence in a tender, compassionate, yet firm voice. I nod, tentatively. 

"Ok," I say. "I see. What does that mean?" My facial expression hasn't changed yet, but my brain has gone numb. Lag. I'm lagging. 

With more of that tender, compassionate, yet firm voice, my doctor speaks more on this very important subject, and I'm hearing only the words. But what I'm seeing is desperation. My doctor's face is growing increasingly desperate behind those steady words, those eyes are boring into mine, pleading with me to understand what they're trying to convey. 'This is bad news, 'those eyes say. 'This is very bad news. You should be crying. What I've seen with this... '

Lag. Lag lag lag. I know it. I know at that exact moment that there is far more tied up here than just the bad news, just a diagnosis, just what I'm hearing on paper. There will be stigma. There will be consequences. There will be a whole host of horrible things that this doctor has experience with - personally - that I can barely wrap my head around right now because I cannot, in this moment grasp any of it. I'm lagged, I'm out. 

I'm like a child who doesn't swim who has just been thrown into the deep end of the pool, but doesn't realize yet that they need to breathe. 

Because whatever that doctor knows, whatever that doctor has seen, whatever they are trying to convey, I cannot understand it yet. I'm not there yet. It's a knowledge gap, it's an experience gap, it's two servers trying to ping each other and the call never connecting. 

I'm lagged. 

Later, when the appointment is over, and I've read a little more, I will cry. The next day, when I meet with another doctor who will explain more clearly the unsaid consequences of this, I will break. A month later, after a seizure and side effects of seizures, a severe neurological response, I will finally, truly, honestly understand some of what that doctor, my doctor, my son's actual doctor, was trying to communicate with her tearful eyes. 

Ping. 

Ping. 

Pong.

The lag abates. 

You can have comprehension without knowledge. You can have knowledge without comprehension. Experience will determine the bridge between the two. 

Summer is here now. The season of true freedom. We will live this summer to the fullest possible. I love the outdoors. 

Floundering

Every now and then I am reminded of all the things I absolutely do not know. 

Which sometimes feels like everything. 

Because the reality is that I don't. 

I don't really know much about medicine; although I've tried really hard to learn about it, the fact is that without actually going to medical school and getting a degree and doing a speciality in immunology there's a real, factual, hard ceiling to the knowledge I'm able to acquire and parse about ICL. I can learn a lot of big, long, Latinate words, but that doesn't mean that I can use them properly. I can search and search and research and read and study, but the that doesn't mean that I have the background or the experience to comprehend. 

It's truly frustrating for me to read most basic levels of information (I use HIV/AIDS stuff, because anything that targets low CD4 counts is usually pretty relevant to ICL), realize that it's not in-depth enough to tell me what I actually need to know, and then get completely lost trying to interpret an article that's actually meant for clinical use. 

It's hard because English is my language, it's actually my field of study, and words are my comfort zone. I feel like, if I can't figure this out I must not be trying hard enough, or studying hard enough, because the knowledge is out there, it's just not really accessible to me. It's not like they do a "Med 101 for Patients" class. 

All it takes is one conversation with one doctor for me to realize just how out at sea I really am. That no matter how much I read, how much I try, how many lectures I watch on Youtube, or how many words or statistics or facts I memorize, I will never understand this. And I'll always be completely dependent on these people I don't even know to decide my life for me. 

That's the rub, right? 

How can I have a real conversation if I don't understand what we're talking about? Otherwise it's just somebody telling me what they want me to do. I can't actually argue my own opinion, my own values, my own priorities. Even worse, if I don't know enough about my own disease, then I can't be my own advocate in my own life. We talked in my appointment about some tests that I had turned down, actually because I had thought, misguidedly, that it was beneficial to turn them down. Except that I was unaware at the time of a significantly increased risk of more serious illnesses, because that wasn't something that I'd been told about or really had understood. There was also disagreement about the potential results of the test, which confused me more. More real knowledge allows me to advocate against that more strenuously. (Test was a lymph node biopsy, by the way. The serious illness is low-CD4 based cancers, like lymphoma. Part of the problem is that most basic level websites don't want to give cancer statistics to their HIV patients, and those aren't commonly known facts.)

The only solution I can think of is increasing medical literacy among patients who want it, like me. I need it, honestly. I have a rare disease that I need to be able to control myself. I need to know my risks so that I can advocate for myself, so that I can live a healthy lifestyle, and so I can make good treatment decisions (and know when to agree and disagree on decisions others make). But also just really clear communication and knowing that I'm trying, really hard. I just don't always understand, and I can't know what I don't know yet. 

Words

It was a conversation that was never meant to take place. An innocent phrase, spoken by a doctor I had never met before that ended up going somewhere neither of us had expected. A simple problem, made complicated by genetics, and headaches, and ICL (of course), leading to more complicated solutions, and then an easy back-and-forth.

An off-hand remark about some side-effect that the doctor didn't want me to suffer from "when I'm fifty" and my casual response, "Like I'll get to see fifty."

*dead silence*

"I...uh.... I wasn't aware that the prognosis was that bad.... um.... wait, how much of this conversation have you had with your doctors already?"

Shit. 

So, here's the deal. Every time I try to have this conversation with my top three doctors (ID, immunology, GP) I get the "hit by the bus" story. You know, I ask them if this is going to kill me. And they reply, Oh, they don't know, I could get hit by a bus next week. Which is like, the least informative thing anyone can possibly ever say. 

Now I've got to limp through an explanation (to someone who has no idea what ICL is) of what I do and don't understand about ICL, about my prognosis, about AIDS, and how ICL is not AIDS because I don't have HIV, but low CD4 counts are not awesome things, about how my care has changed in the last year, and the different conversations I've actually, actually had with people, all while the doctor is tearing up in front of me.

Then she turns white and drops the p-bomb, murmuring, "So, I guess we would consider this a palliative care decision then?"

Shit. Shit again. 

This was supposed to be a conversation about a boring specialist issue that was affecting my life, not the first time ever that end of life care decides to rear its head, and with a doctor who isn't one of my core doctors who I've never even met before. 

For the sake of some side effects I might suffer twenty years in the future. We're not even talking imminent death, here! 

See, docs? This is what happens when you use the bus story instead of having a numbers conversation with your life-threatening illness patients. 

In the end we decided to leave the conversation for a month so she could talk to my other doctors, and so I could talk to my other doctors, and so far it hasn't really gone anywhere yet, except that I've been put on more antibiotics and my CD4 is lower. 

And I've started reading PubMed studies and whipping out a calculator and grouping up study participants to match ICL patients that look clinically like me and seeing what their survival rates were so I can get some number answers so that I'll be better prepared the next time someone makes an off-the-cuff remark and I make a flippant one back, so that I can save us all a really long and painful conversation.

Words. Just words. Just stupid, stupid words.