Saturday, March 23, 2013

Getting Ready for Surgery

It's 2 nights before my surgery. 2 more sleeps and then they are going to alter my pancreas forever. It almost sounds like Christmas except way less exciting. Tomorrow is going to be busy so hopefully I'm not going to be too panicked. Tomorrow I have to do laundry and clean my room and get packed for the hospital, and finish my list about who needs to be communicated and remember to finally take the nail polish off of my hand. Yes, singular hand. I decided to paint one hand and then the other, but then I was doing my nails while doing laundry, so it got all wrecked so I decided it wasn't worth doing the other hand. I was going to take it off, but then I got distracted.

There are more things that I am trying to do to make this easier on me.

One of them is that I'm making my bed pretty. I bought myself a fancy pillow, but so far it is causing me pain (which I sometimes get from normal pillows too so I don't know how much is the pillow and how much is a bad few nights because it isn't like I've been anxious or stressed or anything). I also bought myself sheets that seemed to come with a warranty, which kind of makes me feel like a grown up now. I also bought a new comforter for my bed too. I figured since I live in my bed most of the time, and I'm only going to spend more time here post-surgery I deserved to make my bed a super comfortable place.

I'm also planning several trips this summer when I'm well enough to go. So, I can get pre-occupied with trying to make plans to go out to Newfoundland for a big CYC conference, possibly going to Quebec to learn French for 6 weeks (LSQ too hopefully), I'll know about that next week. Then maybe a big adventure trip to somewhere at the end of the summer. If I get to spend my summer travelling it will make me a really happy me. I've never really been anywhere, other than North America, and only got my passport last summer, so I'm intending to make the most out of having an essential travel document.

We also made a hospital plan. I wasn't really into this idea at first, but it was forced upon me, and then we figured out ways that it could be helpful. Like for me it's super helpful to have a nurse check in with me at night about how the day has gone and what questions I might have for the doctor and what I might need from my doctors so that we can make a list together for rounds in the morning. So, we put it in writing that the nurses should do that with me. Also things like I really like to check my blood sugar with my meter and not theirs because it uses less blood and it is faster. There are other things on there too, but those are the kinds of things that went on it. Just things that are little that make things more comfortable and better for me.

I also had my pre-op appointment on Friday. That was kind of scary. Also really really annoying. They did an EKG, and the nurse made me change into a gown, but have it open in the front, and then she just flung it open and left me completely exposed for the EKG. It makes me wonder why they even bother giving you a gown to be honest.

One of the things that scares me the most about this surgery is the epidural and the fact that they want to leave it in for several days. I'm terrified of this. I think it's more a symbol of everything that is going on with the surgery and it's just a tangible piece to be scared of, but I'm really scared of it. It will be okay, and I think it would be bad of me to refuse it. The anesthesiologist decided that it would be helpful to describe to me in fairly intimate detail how an epidural worked, and the structure of your spine and where in the spine the catheter goes and all of this information that made it super super real. The part of me that gains a vast amount of medical knowledge from my doctors and appreciates the time they take to teach me all of this stuff thought it was cool. The rest of me would have really appreciated not knowing all of this information until after I had had it and it was too late. It just gave me very specific things to be scared of. I've talked with a friend about it though and it seems like it is going to be uncomfortable but okay to go through with. He really didn't help my anxiety though, he said that it is a "wicked" incision. He also reiterated that hospitals do hundreds of thousands of epidurals a year for pregnancy reasons and it is okay. It's a really common thing to do. So, on Monday morning until who knows when I'm going to have some kind of freezing in my spine. I also get to have an arterial IV and possibly an IV in my neck too. He also very strongly stressed that if I wake up with an NG tube I really really really need to not pull it out. I feel this is going to be both very easy and very difficult for me. Easy because I get super nervous about how it is going to feel when the tubes come out and very difficult because I feel like it's going to be uncomfortable and I am going to want it gone. It's easy for all the tubes to get put in me. I'm paralyzed and unconscious, but it's not so easy to have to deal with them coming out. Ask my parents how ready I was to keep my chest tube for forever.

I have to figure out my knitting post-surgery still. It needs to basically be garter stitch in a very simple pattern. I'm wondering if the owl sweater is top down or bottom up. I have the yarn for it, so it may be an awesome time to get a lot of really really boring knitting out of the way. Doing a Colour Affection shawl may also be in the cards too.

It's just kind of hard right now. I keep doing things or seeing people and thinking "This is the last time I am going to see you/do this before I have surgery". I'm realizing that I'm risking a lot and going through a lot for a little bit more than a maybe. It's a lot and it is really scary. I'm getting through it though. I'm getting most of my list done. I didn't dye my hair though. I'm a bit sad about that. With help I can probably dye my hair in the hospital though. That would be memorable. That was something that I wish I had offered to do for my Bubby before she died. She always liked that my hair was fun colours and often threatened to dye hers blue. It would be fun though. I'm trying to think of ways that being stuck in the hospital can be lighter and more fun. Someone I know gets dressed up for dinner in the hospital. I'm trying to think of what versions of that would work for me. Definitely doing my nails once I'm allowed to again. Dying my hair. Knitting. Having lots of people visit and help me make my zine. Being able to decorate things. We should all bring coloured duct tape and decorate my tubing or something. There have to be things in the hospital that we can decorate. I am definitely going to have the coolest step-down unit bed space ever.

Oh! The last thing is that I get to wear my Angry Pancreas shirt to the hospital. I'm actually really excited about this. Someone somewhere on the internet, on Cafe Press or Zazzle or somewhere made a shop that sells things that say "I have an angry pancreas" and have pictures of an angry pancreas and I totally decided that I needed to have one for bad pancreas days. Mostly I only wear it at home, but I am really excited to wear it to the hospital. I'm pretty sure that no one is going to notice and they are going to make me get into a stupid gown and be naked anyway, but it will make me happy. Small things. It's the small things that are going to help me get through it, so I'm trying to find as many of them as I can.

Tuesday, March 19, 2013

The Zine Project

I got my surgery date today. I'm going to be having surgery on Monday, which isn't exactly the greatest amount of notice in the world. On the plus side though, there is way less time to be anxious about it, and I have to be focused on getting the things that I need for me done. It's good to have things be driven like that because I'm really good at procrastinating.

Today I freaked out a lot, but I did a good job asking for support from people where I needed it. I'm sure I will freak out again, but I'm feeling calmer right now, starting to have some good conversations about the carrots that I'm dangling for myself at the end of this. There are lots of things that I'm really excited about happening this summer. I've put a lot of work into thinking of ways to make this summer fun for me, so I'm really excited about all of the things that I want to do.

One of the things that came out of all of my conversations today was the idea of creating a zine based on my experiences of this surgery, as well as being in the hospital and having pancreatitis more generally. While I'm probably going to be the one doing most of the content I want my friends and family who are going to be with me while I'm in the hospital to be able to contribute to the zine as well. I know that me having surgery is going to have a big impact on the people around me, and I know it can be really hard when someone you care about is in the hospital. I also think that while it is my experience, I'm also having that experience within a community of people and the people that I have around me reflect who I am too.

I also wanted to take some time now to explain the zine and how it works here while I'm not drugged out of my mind post-surgery. This way I can print this off and people can read it even if I'm asleep or in surgery itself, or if I just don't have the energy to explain it.

So, a zine is like a home made magazine. They can be super fancy or super basic. Since I'll be in the hospital and won't have a ton of access to things like printers, this zine is going back to roots and being primarily a cut and paste zine. Some of the writing can happen on whatever computing equipment there is around and then emailed to someone who has a printer and then brought back. Or people can write in person. My plan is to bring lots of blank printer paper, maybe some drawing paper if I can get my hands on it and all my art supplies. I'm going to be bringing the backlog of magazines that I have with me to read, and they can be cut up too if people want. So there will be lots of mediums for people to play with to create with to be a part of this.

So, what goes into a zine? Really anything. Typically short stories, or anecdotes or short critical pieces. Drawings can go into zines, comics, artwork, photographs, mock ads. Pretty much anything that you want. There is typically some kind of theme that holds things together that things centre around. In this case it would be my surgery and hospital stay. So the things that people make would be things that are somehow connected to me being in the hospital. Maybe it is a note saying "Get well soon" Or maybe you want to write about the experience of sitting next to someone in a hospital bed when they are sleeping. Or, how weird it is to have tubes coming out of places that just should not have tubes in them. There are lots of options. I know I'm going to try to get pictures of my pancreas before they do the surgery and after they do the surgery. This seems to have become really important in the last 24 hours and maybe have those pictures be the covers. I also want to make a mock ad for the surgery kind of modeled after a weight loss ad. Those are the kinds of things that I'm thinking about. It's a space to be creative and express the crapiness that is having surgery and being stuck in the hospital in some kind of way that is more helpful and resilient. I seem to be nothing but a CYC through and through.

Then, after everyone makes things it all gets put together. That is exciting. Glue sticks and scissors and fun backgrounds will be involved. I should go scope out funky scrapbook paper for backgrounds. Then you have a master copy and you do what zinesters do and distribute it. I'm really excited for this. I think it is collaborative and involves people, and it's expressive, and it's something that I can pick up and put down, and that other people can be engaged in when I'm too drugged to do anything. Or we can work together on a page or something. I want people to be involved in my zine. I'm also excited about the things that I want to contribute. There should be an "About Chronic Hereditary Pancreatitis" page. Like an FAQ or something. I'm definitely getting this planned out in my head.

I really hope that other people get as excited and as into this as I am. I think it has the potential to be an absolutely amazing project. It's also making me feel less bad about the horrible hospital stay after having this kind of surgery, so that in and of itself is a good reason to get behind it. It is something that is really important to me, so I hope it will be important to the people who are important to me too. Which is really a covert way of saying something manipulative like "If you really care about me you'll make a zine with me". That's really the message I'm trying to get across here.

Saturday, March 16, 2013


I got reminded today that it has been too long since I have updated my blog, so an update is in order. So here are where things are at these days:

1) I had an ERCP at the beginning of Feb. On the first in fact. I ended up in the hospital overnight, which wasn't too horrible despite them getting my meds completely messed up. Then I very smartly left the hospital to go to school for a meeting and then landed myself in bed for the next two days, go me.

2) Still no date for my surgery, but it could probably happen pretty much any day now. I will get a whopping week to two weeks at most notice before my surgery. I'm half expecting to get a call on Monday for the week after next. I'm dreading it a bit if that is the case, but part of me is just ready to know when it will be so I can make the plans and just get it over with. I found a new thing to be anxious about though, everything that I see about GI surgery seems to necessitate bowel prep, and having never had to experience that particular *erhm* pleasure before I am less than thrilled. I don't do well with swallowing medical fluids so despite the copious advice I've received on which bowel prep to go with should it be required, I am not at all confident that this is going to go down the way the surgeon would like it to.

3) I gave my first ever peer reviewed conference presentation with my sister today. That was pretty awesome, then I presented on finding kin and building communities of disabled people who are similar to you. That went really well too. Also people seemed interested in my blog, so hi new blog readers.

4) My shoes are still hidden in some Lyrica wasteland. We are experimenting with upping my Lyrica a bit too. The first time I tried I started developing random muscle twitches, so we are trying again. My doctor eventually wants me on the max daily dose which I'm nowhere near. We'll see what happens. The random highs have stopped though which is really nice. We'll see what my body can tolerate and if it says no, so be it.

5) My meds are still a work in progress. We are doing better now though. We found an NSAID that works, and I just have to be careful that I don't give myself ulcers or internal bleeding with it, but it actually controls some of my pain which is amazing. Still experimenting with the diabetes meds and some other stuff too. We are definitely getting closer to a combination that actually hits all of the stuff going on with me which is awesome. I'd love to not be taking like 20 pills/day but if it actually helps that is the important part. I'm starting to go back to being able to take multiple pills at once again and that is exciting.

6) I'm generally doing pretty well and keeping busy. I've been sick a bit from my pancreas, but it hasn't been more severe than needing a day off school and a lot of medication at home. It's been nice to manage it myself and not need to end up in the ER.

Monday, January 21, 2013

Lyrica - The Shoe-Eating Wonderdrug

Alright, I am having a terrible day, and it is a super stressful and busy week for me, so I am going to tell a funny story because that is going to help me feel better. Some of you may have heard it already, but bear with me, it is worth retelling.

So, the second-last time I was in the hospital we had a really hard time getting my pain under control. We tried a few things, getting the pain management team on board, a weird cancer drug that made me throw up on command, and eventually, we wound up with me on Lyrica. The first few days were rough, but then my body adjusted to it pretty quickly. It takes about a month to take full effect, so I left the hospital without it kicking in or seeing much benefit.

The fact that I was prescribed Lyrica is actually kind of interesting. I think it actually shows how up to date on the research my doctor is, and I feel lucky for that. Lyrica is primarily used for a few different things, one of the most common ones being Fibromyalgia. It's also used for seizure disorders, for pain associated with shingles, less commonly for other neuropathic pain and it's also approved in the EU for anxiety. Apparently it's used in association with other anxiety medications. Apparently in Canada we just use Gabapentin (It's older cousin) instead. Anyway, the newer research on pancreatitis is that a significant amount of the pain is caused by nerve involvement. As the pancreas gets inflamed and damaged, it inflames and damages the nerves around the pancreas as well. Some of the more sophisticated pain management techniques can involve surgical nerve blocks of certain nerve centres close to the pancreas. Unfortunately those are temporary and must be repeated. They also sound kind of squicky. Lyrica acts as a neuropathic pain dampener, and I'd rather take a drug a couple of times a day than go through more chronic procedures.

Anyway, about a month after I started taking it, the Lyrica started to kick in for me, and when it did, it really kicked in. I had more energy than I had had in a long time. I started to be able to multi-task, crossing projects off my to-do list like a pro. I felt like this drug had been the best thing to happen to me in a long time. I was focusing better. There seemed no end to the list of benefits that I was getting from the drug. I didn't seem to be having many side effects from the drug either. The only one that we've been able to identify is these intense bursts of energy that I get where I have so much energy that I try to do 20 things at once and usually manage to get a whole raft of things done before the energy wears off. When I am not somewhere where I have the ability to try to accomplish 500 things at the same time, apparently most of that energy gets channeled into talking non-stop and I don't have the ability to sit still. It's a bit like I took uppers and then drank a lot of red bull. Once we ensured that I wasn't going manic on my medication, my doctors just kind of said to enjoy the highs. So long as I was in control and wasn't doing anything ridiculous it didn't sound like that bad a side effect to them.

Almost two weeks ago now, I came home from an appointment near my house and had one of these random bursts of energy. I'd walked home and I just couldn't sit still when I got there. I was all over the place, doing twenty things at the same time. I was trying to make and eat my lunch, making sure I took my meds first, email a million people before I had to leave the house again, was chatting on my phone, attempting to work on an assignment for school and also hang a magnetic board up in my room. All in a span of about 2 hours. I'm sure there were other things that I can't even remember anymore. I was all over my apartment and doing all kinds of different things.

As I was leaving the house I was distracted with a bunch of things that had happened simultaneously. My mom had just received some exciting news so she was texting me, a friend was having an emergency so she was texting me and I was on the phone for her, my sister had just come home, my dog needed out and I was running late for an appointment. When I got to my appointment I looked down at my feet and realized that I was wearing the wrong shoes. They look really similar to the shoes I wear on a day-to-day basis, but they were old and worn out and I'd just never gotten around to throwing them out. I made a mental note that I was wearing the wrong shoes and went on with my day.

That night when I got home I went to look for my shoes. I can't find them anywhere. I look around my apartment a little bit, but don't worry too much about it. The next day I begin searching my apartment in earnest. I ask my sister for help, we look everywhere that we can think of and we can't find them anywhere. At this point I decide that Lyrica must have stolen my shoes and post on Facebook and Tumblr that Lyrica stole my shoes.

That weekend my Dad and my brother are over at my apartment. I ask them for help looking for my shoes. They turn the place apart looking for my shoes. Even they can't find them. At this point I start contemplating buying new shoes.

At this point it's been almost two weeks and my shoes still haven't shown up. There is no sign of them anywhere. No ransom note from Lyrica demanding that I pledge my eternal allegiance to the drug or they will be gone for forever. There have been 4 separate people searching my apartment looking for them. I can't figure out how a pair of shoes managed to disappear in the space of 2 hours. The only explanation is that Lyrica is a shoe-eating wonderdrug. I'm certain as soon as I go buy another pair of shoes they will magically show up again. Then everyone will treat me like the Lyrica has managed to make me imagine the whole thing in the first place (Now, hallucinations are a side-effect worth coming off a drug for). This whole thing just baffles me.

Does anyone else see any other explanation here?

Wednesday, January 16, 2013

Conversations Around Surgery

I think I decided that I like when I blog and start a conversation with people. It is less like talking to myself.

I wanted to have a conversation around surgery. I'm going to be having surgery in about 10 weeks and I was curious what people do to cope with surgery. I figured I'd share a bit about what I am thinking and what I am going about doing, and then let other people talk about their experiences and what has helped or hindered etc.

The last time I had surgery I didn't do a lot. That surgery was a lot less scary though. They were taking out an infection that could kill me if I didn't let them out of my ear, and a good chunk of the bones in my ear with it. Since I didn't want to have bacterial meningitis I let them do it. It was my head so there wasn't really any pain. At least not by the time I got out of the hospital. I don't even remember having an active iv overnight afterwards. My prep mostly involved getting really anxious and trying to bring my teddy bear into surgery. Afterwards I felt fine and sat in my house and knit for two weeks straight while trying to keep wind out of my ear. Not exactly a hardship.

This surgery is going to be different. This time I'm allergic to a lot more. The surgery itself is much more complex. The hospital stay is much longer, and the recovery is longer too. There are things that just are, like the part where I am going to have this surgery because I need it and need to be better, and there are things that are more flexible, or that I at least have more control over.

I'm lucky enough that the hospital I am having the surgery in has flexible visiting hours and I'm going to try to have someone essentially stay the night with me for the first couple of nights at least. I'm going to be on heavy pain management and have lots of tubes and little ability to move or be independent so having someone there seems essential to me. I'm a good advocate, but being that compromised and it not being in the hospital that I prefer means the need to have others to help with advocacy.

I'm also thinking a lot more in terms of what is going to happen when I get home. For the most part I know hospitals and how they work. Gradually I'll start being allowed food again (Not like I have any experience with that process or anything *sarcasm*). As my pain gets better I'll be able to knit, watch stuff, read, colour, all of my standard hospital activities. Eventually I'll be able to get up and walk around, get my own water or tea. That kind of a thing.

Before my surgery I am, barring some exceptional reason why it can't happen, going to get an occupational therapist to come to my apartment to assess what equipment I might need to help after my surgery, like supports to get out of bed and in my bathroom and stuff. I am also going to get all of the mobility and other stuff that she suggested last time that I haven't done yet. This will include a scooter. Right now my mobility has improved a lot such that it hasn't been an essential but I feel like it is going to give me a lot more independence and flexibility after my surgery to get out and be a part of the community again sooner.

I'm also organizing friends who can help, the way that I usually do, with laundry, cooking, cleaning, things to give my sister/roommate a break from taking care of me at a time when school is stressful for her. I'm hoping to be able to do things like get my room cleaned and in good order before the surgery, but trying to finish 4 courses at school in 9-10 as opposed to 12 weeks might make that difficult.

One of the other things that I'm trying to do before my surgery to help make after better is to build up my strength. For me this has meant increasing my activity in some pretty measured ways. Unless I am sick (and not sick in the I don't want to way) the rule is that I go walking or swimming everyday. So far that has worked really well for me. I have to be careful not to overdo it too much, and be careful it is the right kind of exercise with my other disabilities but going for a walk with my puppy or swimming at school when I'm there anyway works well for me. Swimming makes me super happy and I'm getting better at it too. I'm surprised how quickly my body has gone from "worrying the lifeguard that I might drown because it's been so long since I swam" to actually having some coordination and while I'm not a competitive swimmer, my body is remembering how to put moving my arms, legs, and breathing together in a coordinated effort to move me from one side of the pool to the other.

These things all sound kind of simple when I write them out, and like they don't actually make up a really coordinated effort to control the parts of this that I can and not have it be terrible. I'm curious what other people have done, especially anyone else who has had pancreatic surgery. I'm curious about what to expect, and what other people have done to make surgery manageable for them. Obviously people survive it and it is supposedly better than all of the pain I'm going through without it, so I feel like I probably have the wherewithal to get through it, but I like to be well prepared and do what I can.

Sunday, January 6, 2013

ER Advocacy

Seeing as how I've spent so much time in the ER (Though not in the last month or so.. whoo hoo!!!) I've found a few things that make it a lot easier for all involved. Being in the ER is never fun, and it is particularly less fun when you know how it is going to end but have to get through the process anyway, but having a few tips can go a long way to making it a lot better. I feel like writing a numbered list tonight so that is what this post will be.

1. Expect to be there forever. This may not seem like much of a tip, but managing expectations can go a long way. I've seen so many people lose their cool over how long the wait for a doctor is, or to get called back into the ER after triage. If you expect to be there for awhile, you can handle the wait a lot better. If you are able, try to read, or knit or something to help pass the time. Usually by the time I make it to the ER I'm too sick to do any of that, but I try to find a comfortable spot where I'm not in too much pain and I let whoever I am with distract me or sometimes try to rest until it's my turn. Getting frustrated about how long it is to wait doesn't help anyone. It's hard when you are in a lot of pain, but since they prioritize the people who are most severe it can be awhile. I'd rather know that if it was life or death I'd be in there first and getting care right away and having the doctor there, than make a giant fuss about how long I'm waiting to be seen.

2. If you have a diagnosis, or even a strongly suspected one, and you are there for a flare of a chronic condition tell them. This seems a bit basic, but it is really important. From the triage nurse onwards I tell everyone I am having a flare of chronic hereditary pancreatitis. This helps them know how serious it is, can help express how much pain I am in at the time, or how likely I am to puke while waiting (surprisingly that actually hasn't happened yet) etc. Understand though, they are still going to investigate all of the other common things that might be causing your symptoms. They will do all the routine blood and urine cultures etc. to try to confirm what you are saying. It's not that they don't believe you, it's just that it's better not to miss that it's actually a bowel obstruction or gallstones or something else that is similar but just not quite.

3. Bring a list of all of your medications, dosages and schedules. When I bring in my list (that has other stuff on it that we will cover shortly) nurses and doctors never hesitate to comment how awesome it is and how rarely they see something like this. It scares me the stories that I hear of people not even knowing what medications they take or what they take them for. If you take meds and you don't know what it is for call your pharmacist or doctor ASAP and ask. Keep it up to date too. I'm constantly printing mine again and again because it constantly changes. Also, you could put it on your smartphone or tablet, but I like being able to hand someone a physical copy to attach to my chart. This is helpful for all kinds of reasons, and is one of those no brainers that shouldn't need to be said, but if you are on more than one or two things, or have conditions that lead you to forget things like names of drugs (or if there are just too many) it is essential. Also bring the drugs with you. I've definitely sat in the ER with a pharmacist pulling every drug that I ever take ever out of my backpack and going over why I take it, how much I take and how often I take it with them. It is really important.

4. Bring a list of all the things you are allergic to. Especially if you are likely to encounter them in an ER. I'm allergic to basically all medical contrast ever and all adhesives ever so I have lots of fun in the ER. It's gotten to the point that there is one adhesive that is kind of okay to use with an iv that I can use. The ER that I go to doesn't stock this. My solution is rather than wait for the ER to track some down from another part of the hospital, that could delay my iv and needed medications is to carry it with me. I actually just keep it with me at all times. Again a list of allergies is helpful because it means they can plan treatment etc. around them without harassing you every ten seconds.

5. Be knowledgeable about your condition. If you've had any surgeries or procedures, if there are things in your body that wouldn't normally be there, if you know what dose of what pain medication works when you are in hospital, let your doctors know. Often the doctors will ask. The one that I really love is the doctor will come in, and they will ask me what is going on that I came to the hospital. I will tell them I have chronic hereditary pancreatitis and I am having a flare up. They will then without exception ask me if I know how I got pancreatitis. Sometimes I just stare at them and repeat it's chronic hereditary pancreatitis and let the second word creep in. If I'm in a moment of less pain though I usually tell them I got a perfect copy of imperfect RNA.

6. Go to a hospital where you have a history. This should be 1, but I'm too lazy to go back and change my list. It has improved my care 100 times over to go to a hospital where my GI doctor works, as opposed to the hospital that might be closest. Having access to past tests, procedures, records of my pain management regimens, makes a world of difference. On top of that sometimes I get lucky and it is my GI doctor who is on call. My GI doctor is however 100% of the time consulted and involved in my care. If it isn't possible to do this (Like when my sister and I were on vacation and she ended up in hospital hours away from home) make sure contact information for all of your specialists is also one of those things you bring to the hospital. Once they get you stable the doctors involved in your care can call your specialist at home to find out the intricacies of your care, and you'll be better off for it.

7. Be nice to people, but don't be afraid to advocate. This also extends to try not to go to the hospital alone if possible. It's awesome to have people to help track a nurse down to ask for the next dose of pain medication, or to steal an extra blanket for you (Though pro-tip: Ask a nurse for a heated blanket, it's a small thing but they are way better). Also, if they try and put you on NPO negotiate to be allowed ice chips and water if possible. Again a small thing, but makes a huge difference. Just remember that nurses are human too, and when it gets busy it is busy. From spending so much time there I've learned a lot of patience, and it's hard, but things happen in their own time in the ER. It is it's own world, and at least there is a lot of people watching to be had there. Not often people in their finest moments, but there can be a lot to be learned from that.

Anyway, that's what I've got for now. None of it is really magic, but it is a lot of small things that make a difference. Anyone else have tips for ER visits I haven't mentioned here?

Wednesday, December 26, 2012

Updates and medications

Truth be told, I'm a bit surprised at how tame this blog has been since I started it. I started the blog not too long after I came home from my 5th hospital admission since May. I'm not even sure how many additional ER visits there were on top of that. During all of that I had 3 or 4 ERCP's (Endoscopic procedures performed on my pancreas to clear my main pancreatic duct and place stents in to keep it open), vials and vials of blood stolen, lots of pain meds and a lot of pain. It was what answered the question irrefutably that the surgery I'd been putting off for two years wasn't optional anymore. Now I've been home for about a month, and I've been doing really well. When I saw my doctor a couple of weeks ago he said he thought it was the healthiest he's seen me look in months, which is awesome. I may even get to skip my January ERCP if this keeps up. That would be a giant plus. Sometimes that is just what happens things magically settle down.

That being said, we also seem to have finally hit on a good combination of meds for me and it's made a huge difference. I have energy again and I feel like myself again. I'm not overwhelmed with nausea and puking all the time which is wonderful. Trying to find the right anti-nausea medications was like throwing a needle in a haystack. It's taking two different meds to keep things in me where they belong. I'm on meds and dosages that people would think belong to a cancer patient, even my doctors were on their last try with these ones, so I'm really glad they are working and I can function on them.

I wanted to talk about medication, and scheduling and how it is so difficult. I know that a lot of people suggest things like a pill timer, reminders on your phone or even a pill organizer, but those things don't really work for me. I have a lot of trouble with medication. First of all, I hate pills. Half the time when I swallow them I automatically gag and try to get them back up. It makes knowing if I can't get my pills down because I'm sick or just having a bad pill day a challenge.

Second of all, all of my pills have to be taken at so many different times. I take 4 pills when I wake up, typically in lieu of breakfast. Sometimes I'll have a snack after, but my appetite is still lost in the pre-hospital days so breakfast is a challenge. Also, some mornings I get up and just jump into something and morning meds happen later at like 11 or noon.

Then meds around lunch are difficult. One pill needs to be taken 30 minutes before I eat, two pills just as I eat, and one when I am done eating. Dinner is similar with 2 pills before I eat instead of one.

Night has just two meds right now. It should probably be 3.

I also have scores of as needed meds that when I need them, they are there. I can respond to pretty much any medical state I might find myself in on my own. Which makes me saying that I need to be in the hospital all that much more alarming. I hate meds, but I've come to be really good about them. I still definitely miss here and there and trying to plan 30 min before I eat is impossible. Sometimes I end up waiting an extra 30 minutes to eat just so they can kick in first. My point is more that I'm lucky that my doctors have trusted me to learn how to take care of myself, that I know what I can mess around with and what I can't and when I can handle a flare myself and when I can't.

It also makes a big difference how much I know about a lot of my meds. When my doctor goes looking for her pharmaceutical reference book and I already know the max dose, the standard dose, the standard and off-label usages. Asking questions and knowing about what you are taking is so important. It really scares me when I sit in an ER and hear someone say that they are taking a pill because their doctor gave it to them and they don't know why. That scares me.

Since I know that advocacy within the medical system is something that lots of people with chronic pancreatitis have problems with maybe next time I will talk about what I do to help advocate for myself during a flare and the ER.