Here’s to my village

I last posted around two weeks ago, on December 1, about how I always finish the day by saying tomorrow will be better. Unfortunately, the last two weeks (two months…two years, really) have not been better, and have in fact been more than my poor body can handle. On top of all my underlying health problems that cause incredible fatigue, I’ve gone to a lot of important but tiring appointments, had a lot of blood drawn, spent a lot of days suffering through horrible side effects of antibiotics, and topped it all off with a late night trip to the ER for severe abdominal pain that dissipated after 24 hours as randomly as it appeared. I now feel like a giant jello jiggler.

The good news, however, is that all signs now point to better days ahead. No more antibiotics for now, no more appointments until January, increased calories in my TPN and a temporary hold on tube feeds, and extra fluids for the rest of the week. It won’t be instant, I know that. After years of setting “I will be better by _______” deadlines, and after years of heartbreak every time Christmas, Easter, my birthday, etc. rolled around and I wasn’t better, I’ve stopped doing that. I still set deadlines, but I do so in a much more realistic and flexible way. Case in point: I should be noticing an improvement from all of these changes by the next time I see my GI specialist on January 19, and if I’m not then it’s time to brainstorm some more solutions.

So yeah, the last two weeks have been really tough, but they could have been even worse. “It takes a village to raise a child”…you know that saying? Well, it also takes a village to support someone with a chronic illness. I have always been an independent person and it frustrates me to no end that I can’t do everything for myself by myself right now. Oh believe me I try to more independent than I’m capable of, but that’s how I wind up running out of a store before paying to avoid passing out in the checkout line and lying in the backseat of my car for 45 minutes before I feel steady enough to drive home…a story for another time! As much as I hate relying on other people to do everything for me, it’s better than putting myself in danger so I’m working on just sucking it up and embracing my dependence.

And even though I hate my loss of independence, I’m part of an amazing village! Let me tell you about some of these amazing villagers.

There’s the obvious ones, like my mom, who has driven me all over the place for all sorts of appointments, who has patiently waited with me for appointments that were running late, who has advocated for me during these appointments, and who has gone out of her way to run all sorts of errands for me so that I wouldn’t have to leave the house. And there’s my sister, who offered to come wait with me in the ER the other night so my mom could go home, and who was up at 1am texting me to see how I was doing and making sure everything was okay. And then there’s my brother, who came to the ER at 10:30 at night so my mom could go home, even though he had been up at 4am for work, had only just returned home from two weeks working up north, and had to miss an end of exam celebration with his engineering friends. And there’s my brother-in-law who picked me up in the middle of the day yesterday and drove me back to the hospital for an ultrasound.

Then there are the countless villagers who show their support in other important ways. Like my aunt, who always emails me to say hi and see if I need anything. My best friend who listens to all the TMI details of chronic illness and always helps me find the humour in it all. There’s my old-coworkers-now-friends who continually check in with me to make sure I’m doing okay. There’s my support group of gastroparesis sisters who, no matter how sick they are or how much they are dealing with in their own lives, never fail to send me love and wish me spoons, including one who actually sent me a picture of her family’s antique spoon collection when I really needed the extra energy to get through the day.¬†And my friend in Saskatchewan who sent me a just because care package in the mail. And my elementary school teacher who dropped by last week with flowers for my room. These are just a few examples, but there are countless more that I can’t even begin to list. I have been shown an overwhelming amount of love and support over the last little while. Almost every day, in some form or another, someone lets me know that they are thinking of me and that is a huge part of why I am able to maintain hope and smile through all of the yuck.

My village includes a great team of medical professionals, a team that continues to grow! Like my GI who said I looked exhausted, and the TPN doctor who I had never met that said I looked really unwell. This might seem counter-intuitive to you, but for me, hearing that I looked bad was a huge comfort! It meant that I didn’t have to try and justify how poorly I was feeling. And as opposed to when I hear that I look good, I didn’t have to smile and say thanks, knowing it was a big lie. There’s the internal medicine doctor who spent close to an hour taking my history last week. In the end he couldn’t do much for me, but I felt heard. There’s even the medical imaging receptionist who let me skip the waiting room yesterday and instead go lie down on a stretcher in the hallway outside of ultrasound and wait for my test there.

And there’s you, you reading this right now, because by reading this you are giving me a voice, and a purpose, and you are making me feel less alone.

So here’s to my village. My whole village. My family and my friends, and friends of my family and friends. Fellow spoonies who I’ve never met face to face but who know me inside and out anyway. My health care team that never stops fighting to help me see better days. People I encounter only once but whose kindness leaves a mark, who won’t remember me at the end of the day even though I will remember them. And everyone reading this.

My life is better because of you.

Thank you.

Tomorrow will be better

I’ve been home for just about four weeks now and I haven’t written anything since my last night in the hospital. I wish I could tell you it’s because I’ve been busy living life and too distracted with all the comforts of home, but that’s not the case.

My first week home was a whirlwind. The day after I came home I developed incredible discomfort and pressure next to my feeding tube site accompanied by a bulge in my abdomen. After two nights of barely sleeping because of the discomfort and pain (and having a doctor tell me ‘worry can do that to us’) the balloon on my tube ended up popping (again…just two months after the last one). This of course meant that I had to go to interventional radiology to get it replaced. Five and a half weeks in the hospital…and three days after I’m home the tube breaks. After explaining all my symptoms to the radiologist, the going theory is that the balloon was causing a partial obstruction (‘worry can do that to us’…pft!). The new balloon is inflated to a smaller volume to hopefully prevent this from happening again.

In addition to the tube change, I also had to get my weekly TPN bloodwork, went to two doctors’ appointments, and had an appointment at the home health nursing clinic to have round one of my sutures removed. And then there was the whole getting used to doing TPN on my own at home thing. Like I said, it was a whirlwind.

And then I crashed. Now, I was expecting to crash when I came home. Pre-hospital I was so sick but trying so hard to avoid the hospital that I was basically just running on adrenaline. I’m not sure things really changed during my time in the hospital. Despite the fact that they are full of sick patients who need rest, hospitals are not super restful places. Between my crazy roommates, and my crazy roommates’ family members, moving locations four times, having doctors change the plan every other day, PICC placements, the tunneled central line placement and all the TPN training, it was busy and I came home exhausted!

So I was expecting a crash. I expected to barely move for a week or two while my body recovered and then I expected to slowly feel myself getting more energy and being able to do a little more, feel a little better. But that hasn’t happened. The opposite has happened. I’ve crashed harder and longer than I was anticipating. And I don’t feel myself getting stronger, I feel myself getting weaker. I’ve developed a whole host of random mystery symptoms that are keeping me down. It’s frustrating because everything that I’ve gone through recently has been for the purpose of improving my quality of life which hasn’t happened yet. And it’s a little scary because I’m supposed to be getting better and I’m not.

Maybe I picked up some sort of virus and that’s why I’ve been feeling so awful. Or maybe my body is just doing major damage control from my days of too few calories and it’s just going to take a while. Or maybe something else is going on. I guess only time will tell.

No matter how awful my day has been or how awful I might be feeling at the end of the day, every night I always say “tomorrow will be better.” On first glance, every day lately I am wrong and my ‘tomorrow’ is not better. On second glance, though, something about the ‘tomorrow’ is always a little bit better than the yesterday. I had a better sleep, I was able to wash my hair, I got a funny email from my Grandma, I got a new scented candle, old neighbours surprised me with flowers. Tomorrow as a whole is not always better, but there are good things happening every day to keep me going.

And then I was thinking about how every day millions of people in the world are having a bad day, and how those millions of people are all wishing for a better tomorrow. Maybe my tomorrow isn’t better, but I bet it is for some of those millions who were also having a bad day, maybe people who need it even more than I do. And the next tomorrow is better for a few other people. And one day it will be my turn.

I am a Lady in Waiting, after all. And good things come to those who wait – I have to believe this is true.

Tomorrow will be better.

One day, I will be right!

Clean hair

Yesterday afternoon I had my tunneled CVC (central venous catheter…same thing as a central line…but the cool kids call it a CVC…or the lazy ones) put in. In my last post I said that I wasn’t really sure what it would be like in terms of sedation and pain, so let me fill you in now that I know. Sedation was mild. Very mild. I was completely awake and aware the entire time with no memory lapses or anything. I was quite calm throughout the whole thing, and perhaps whatever they gave me helped with that, but I’ve also gotten really good at just lying still and remaining calm while doctors and nurses perform uncomfortable procedures…tube changes, PICC line placements…it’s all just part of the chronic illness territory. As for the pain, they numb you up really well so the procedure isn’t painful but it is incredibly uncomfortable. Once the numbing wore off it was a different story. I could barely move last night. Besides just the ongoing sharp ache all through my shoulder and neck, every time I moved I would get these sharp twinges. And it all felt so tight and stiff that I couldn’t even hold my head up straight. Ouch.

Thankfully today the pain is so much better! I’m still sore and I’m not moving around as smoothly or as quickly as usual, but it’s all very tolerable. I was determined to just suck it up and do all my own TPN stuff today so as not to delay my discharge. I am happy to report that I have passed what I like to call ‘TPN school’ and will be going home tomorrow!

I passed TPN school. I’m going home tomorrow. I should be satisfied, right?

Wrong. My hair was really greasy and it was really bothering me. Because I can’t get my CVC dressing wet, showering is actually quite a production. And since my feeding tube was all dressed and taped up it would have been an even bigger production. No big deal, I told myself, it can wait until I’m home tomorrow. Except that I couldn’t stop thinking about my hair. To make things worse I kept touching my hair to try and convince myself that it didn’t feel too gross, which then only reinforced for me that it needed to be washed.

I was lying in bed frustrated about the fact that my hair needed to be washed but that there was nothing I could do about it, and then I realized that if I really wanted to I could do something about it. Or I could at least try. So I decided, with my sore and stiff shoulder and neck, that I was going to wash my hair. I am now going to proceed to share too many details about the process so you can picture just how much effort was involved.

Ease myself up and out of bed. Disconnect my feeding tube. Pick up the TPN backpack. Grab a towel from the hallway and walk back to the bathroom. Put the towel on the floor of the bathroom and kneel down. Lean forward over the edge of the tub to see if I’ll even be able to move my arm enough and without too much pain. Stand back up and go back to the hallway to stock up on towels. Maneuver my way to the cupboard and awkwardly reach down to grab my shampoo. Reach down again to grab the Press and Seal saran wrap. Cover my dressing with press and seal. Take braid out of hair and brush it. Bring supplies to the bathroom. Reach up to grab the movable shower head extension thingamajig (no red underline under the word thingamajig!? Apparently it’s a real word!). Cover my backpack with a towel. Wrap towel around my neck and tuck it in shirt for extra security against the evil water. Lean over tub. Okay, phew. Now I can wash my hair! I’ll spare you the details on the actual hair washing itself.

It wasn’t the most painless process in the world, but it was far from the most painful one. Pain aside, I’m really happy that my hair is clean! It was a lot of work, but I’m really quite pleased with myself that I made it happen.

And sure, another day I’ll probably be discouraged by how much extra effort it takes me just to wash my hair, but for tonight, my clean hair is a huge accomplishment and I’m really happy about it. For tonight, my clean hair is enough to keep me smiling.

We all have our limitations and we all have things that take more effort than they should, but there is a difference between the two and I think we often get them confused. I know I do. I tend to be an optimist, but I am also very realistic about my health and my current situation. I know I have certain limitations; I know there are things I cannot do right now. I cannot work a full time job and I cannot eat a real meal. I cannot go to school and I cannot take a trip around the world. One day I might be able to do those things, but right now I can’t and I know that. In a completely separate category are the things that take a little extra effort but that I can still do. Like washing my hair. And getting enough calories into me. The problem is that sometimes I look at the extra effort required and see it as a limitation.

I’m not saying we should all abandon our realities and forget our limitations, all I’m saying is that we shouldn’t be afraid of putting in the extra effort to do things that make us happy and well. If we focus on all the things we can still do, and if we take pride in the things we accomplish in spite of the extra effort required, our limitations won’t always be the focus and they won’t always seem so overwhelming.

I leave you with a delightfully cheesy quote from my grade seven classroom: “Triumph is just try with a little umph.”

My clean hair is a triumph indeed!

I wish everyone tonight clean hair, whatever that may mean for you.