Lots to update about. Been a hectic week, in and out of the emergency department, what feels like a million dressing changes, a leaky PICC line, and horrible blisters caused either by vancomycin leaking under the skin or an allergic reaction the the tegarderm/statlock/chloraprep/etc. Leaning toward the former, although I really wish it were the latter.
End result - PICC line was pulled and a new one placed in my other arm. A new PICC. A better PICC. As I like to call it, PICC 2.0
If it does as it should, it will lead a long and useful life. If not... well, it will go the way of PICC 1.0. We didn't like PICC 1.0 very much.
Thursday, July 30, 2015
Thursday, July 23, 2015
Lovely lovely blood!
Good blood return from my PICC line this morning! The plumbing works!!! Great way to start the day.
I am in good spirits today, although I feel pretty knackered.
There are good days and bad days. Not sure what this one will be yet energy wise (hopefully improves after breakfast and a steaming hot shower), but I am adamant that the day will go well.
Write my clinical IV math test today. The fact that I am allowed to write it is a sign that I will most likely be allowed to pass my clinical course despite missing the last five weeks. And tomorrow afternoon I see my surgeon to ask some (ok, a lot...) of questions about the upcoming surgery.
The semester is winding down nicely - only 3 weeks left, including final exams. The last batch of assignments/tests went well. 98% on Health Sciences test, 97% on Psychology paper, and 90% on Health and Healing quiz. Just waiting for the mark for the psych test I wrote Monday morning. At this point I can't fail any of my courses anymore, which is a huge relief, just in case I really don't feel well during exam week. Just need to keep practicing for OSCES. Being sick and and school is stressful, but honestly, school has been a great big beautiful distractions. Not sure what I would do between now and surgery without all the homework and assignments.
I don't mean to brag when I include my marks on here. I am usually pretty private about them, and don't really even tell my friends at school. But they are honestly the only major good thing going for me in my life right now. Always tired, bone pain, PICC line, waiting for surgery, etc. My friends and classmates have their health and jobs, boyfriends, vacations planned for the break between second and third semester, plans for the future. All I have at the moment to really cling on to is surgery and the hope that this round of treatment/surgeries will finally finally finally oust the bone infection.
Don't get me wrong, there are other good things in my life - a loving and supportive family, taking pleasure in the simple things, a beautiful backyard to hang out in and lay in the sun, a few great friends.
But I don't feel like I am where I want to be in my life. I should be exicted to be almost half way through my nursing education, dating boys, doing my road test to get my G2 drivers license, working, maybe going on holiday, thrileld about life, feeling invincible.
Instead, I am on IV antibiotics waiting for surgery so my surgeon can cut out two inches of my tibia and fill in the gap with bone cement, only to pump me full of even more antibiotics before a bone graft three months later, with no promise that any of it will be successful. I am doubtful and afraid. My doctors were so sure they got it last time around, but they didn't. They seem confident again, but I am not so sure. I don't want to get my hopes up. Hope for the best and expect the worse again.
I have said it before, but how the hell did I get here, waiting for two surgeries and IV meds/PICC line, when six months ago I was being told to just wait and see until October/November, and that surgery wasn't even being considered?
In psychology we are learning about old age and dying. Part of that means looking at perspective on death in different age groups. One is young adult. They feel invulnerable. Not we, they. I am not part of that group anymore. I feel vulnerable. So so vulnerable. I don't want great grand things anymore. I just want to get up in the morning and feel that I have the energy to get through the day.
I am in good spirits today, although I feel pretty knackered.
There are good days and bad days. Not sure what this one will be yet energy wise (hopefully improves after breakfast and a steaming hot shower), but I am adamant that the day will go well.
Write my clinical IV math test today. The fact that I am allowed to write it is a sign that I will most likely be allowed to pass my clinical course despite missing the last five weeks. And tomorrow afternoon I see my surgeon to ask some (ok, a lot...) of questions about the upcoming surgery.
The semester is winding down nicely - only 3 weeks left, including final exams. The last batch of assignments/tests went well. 98% on Health Sciences test, 97% on Psychology paper, and 90% on Health and Healing quiz. Just waiting for the mark for the psych test I wrote Monday morning. At this point I can't fail any of my courses anymore, which is a huge relief, just in case I really don't feel well during exam week. Just need to keep practicing for OSCES. Being sick and and school is stressful, but honestly, school has been a great big beautiful distractions. Not sure what I would do between now and surgery without all the homework and assignments.
I don't mean to brag when I include my marks on here. I am usually pretty private about them, and don't really even tell my friends at school. But they are honestly the only major good thing going for me in my life right now. Always tired, bone pain, PICC line, waiting for surgery, etc. My friends and classmates have their health and jobs, boyfriends, vacations planned for the break between second and third semester, plans for the future. All I have at the moment to really cling on to is surgery and the hope that this round of treatment/surgeries will finally finally finally oust the bone infection.
Don't get me wrong, there are other good things in my life - a loving and supportive family, taking pleasure in the simple things, a beautiful backyard to hang out in and lay in the sun, a few great friends.
But I don't feel like I am where I want to be in my life. I should be exicted to be almost half way through my nursing education, dating boys, doing my road test to get my G2 drivers license, working, maybe going on holiday, thrileld about life, feeling invincible.
Instead, I am on IV antibiotics waiting for surgery so my surgeon can cut out two inches of my tibia and fill in the gap with bone cement, only to pump me full of even more antibiotics before a bone graft three months later, with no promise that any of it will be successful. I am doubtful and afraid. My doctors were so sure they got it last time around, but they didn't. They seem confident again, but I am not so sure. I don't want to get my hopes up. Hope for the best and expect the worse again.
I have said it before, but how the hell did I get here, waiting for two surgeries and IV meds/PICC line, when six months ago I was being told to just wait and see until October/November, and that surgery wasn't even being considered?
In psychology we are learning about old age and dying. Part of that means looking at perspective on death in different age groups. One is young adult. They feel invulnerable. Not we, they. I am not part of that group anymore. I feel vulnerable. So so vulnerable. I don't want great grand things anymore. I just want to get up in the morning and feel that I have the energy to get through the day.
Wednesday, July 22, 2015
Fixing the plumbing
I have a love hate relationship with my PICC line. On the one hand, it is inconvenient: it has to stay dry in the shower, I can't dance in the rain, it itches like crazy under the tegaderm dressing, it requires weekly dressing changes, it likes to drain gunky yellow stuff that hardens under the dressing and irritates things even more (and is gross too look at), it makes it difficult to get dressed when I am connected to my pump (24/7), it prevents me from being allowed at clinical, and the tubing gets caught on things and has a life of its own (find it trailing behind me, escaped from the unfashionable iv pump bag when I go out), it makes people stare at me in public (oh, you don't like looking at it? The thought of a tube running from just above your elbow to your heart makes you nauseous? Well, its a good thing that you don't have to live with it than, isn't it!), there are infection/clot risks, etc. etc.
On the other hand, it is the saving grace that is allowing me to complete the semester (saving time, hard work and lots of great grades, and tuition), has allowed for the IV vancomycin that had vanquished the night sweats I have been having since Christmas and the low grad fevers, made it possible for me to sleep almost continuously through the night (only wake up 1-2 times a night now vs. every hour or so before), and makes me somewhat less of a walking zombie (yay for only sleeping 10-11 hours a day instead of 15!).
In my book, the benefits far outweigh the drawbacks. I therefore tolerate the PICC line and am thankful it is helping me "lead a normal (ish) life" until surgery next month.
So, I am, quite understandably, a bit pissed off with the line when it decides to malfunction.
I am supposed to check for blood return every morning (take a syringe and pull back until I see blood coming out the PICC), and flush with two 10ml syringes of normal saline every morning before I attach a new IV bag for the next 24 hours.
Last time I had a PICC line (way back in 2012), my line stopped giving blood return. Most of the nurses ignored this, and said as long as the line flushes it is fine. So when my line stopped giving blood return on Sunday I thought nothing of it. I still tried every morning, to no avail, but I thought as long as the meds go in without a hitch, now worries.
Since the dressing change Saturday morning, the insertion site had been draining this weird yellow fluid. It hardens under the dressing and becomes super irritant. The drainage stops and starts for no apparent reason. By Tuesday morning there was quite a bit, so I made an appointment to get the dressing changed early (usually every 7 days, but can be done as required).
The nurse at the CCAC clinic wasn't pleased with it. She said its good its not pus and no pain or redness, but its not really supposed to drain. She also couldn't get blood return. She said policy is that if the line doesn't give blood return, it can't be used. She said I had to go to the facility that placed the line to get it taken care of right away. Problem is, I got it inserted at the children's hospital. That hospital is right across from my place (I can literally see the waiting room in my doctor's office from my living room). It takes me about an hour to get from my place/children's hospital to the CCAC clinic. Meanwhile, the General hospital is right down the street from CCAC. Not wanting to risk getting to Children's and being sent right back to the General because I am over 18, I decided to stop in at the General first and see where they suggested I go. They said to stay at general, since Children's would like not see me (thank fully! Saves 1-2 hours of traveling on the bus, back and forth).
I checked in just after 2:30, and was called back from the waiting room at about 3:30. The nurse who I was assigned to was the same time I had 2 weeks ago on July 9th. She recognized me. Not sure if that is good or not. She tried getting blood return. As usual, flushing was fine, but no blood to aspirate. She said it is odd, usually a problem they only see when people have had a line for long periods of time, eg., months, But she also said vancomycin is known to be bad for blogging lines. Hence, the need for a PICC line... I still have the bruise from the peripheral line placed in the ER July 9th.
My plumbing wasn't plumbing as it should. Super easy to fix apparently! The nurse injected what I can only describe as the medical version of liquid plumr or drano in the PICC line, put a cap on the line and told me to come back in and hour. It is called CathFlo (Alteplase), a tissue plasminogen activator (and I know what that means now that I am a nursing student!).
Fast forward an hour, after sitting int he hospital cafe reading a book on 13th cenury England, I returned, and low and behold, we had blood flow! Plumbing restored!
Never have I been so happy to see my blood in a plastic tube, outside of my body where it should be!
To do things all proper, the doctor then saw me for all of 3 second, basically "How are you feeling? Nice to meet you! Bye'.
And I was out the door.
I went to Dollarama to pick up some more of the Burt's Bees Gud products. Only saw the conditioner the other day. Discovered body wash and body lotion today. Then took the bus home, stopped at shoppers to buy a pizza to eat this weekend, and nothing much else. Pretty nasty headache since I left the hospital just before 5pm. Totally ready for bed and hoping I get blood return tomorrow so I can start the vancomycin infusion without yet another trip to emerge (that's five times this year now.... enough to last me a life time).
Last thing before bed - here is arm today. Bruise is fading slowly but still quite visible.
Also, you can;t see it but there is a dressing over the insertion site. Nurse used a different one than usual because it hurt quite a bit getting the tegaderm off today.
On the other hand, it is the saving grace that is allowing me to complete the semester (saving time, hard work and lots of great grades, and tuition), has allowed for the IV vancomycin that had vanquished the night sweats I have been having since Christmas and the low grad fevers, made it possible for me to sleep almost continuously through the night (only wake up 1-2 times a night now vs. every hour or so before), and makes me somewhat less of a walking zombie (yay for only sleeping 10-11 hours a day instead of 15!).
In my book, the benefits far outweigh the drawbacks. I therefore tolerate the PICC line and am thankful it is helping me "lead a normal (ish) life" until surgery next month.
So, I am, quite understandably, a bit pissed off with the line when it decides to malfunction.
I am supposed to check for blood return every morning (take a syringe and pull back until I see blood coming out the PICC), and flush with two 10ml syringes of normal saline every morning before I attach a new IV bag for the next 24 hours.
Last time I had a PICC line (way back in 2012), my line stopped giving blood return. Most of the nurses ignored this, and said as long as the line flushes it is fine. So when my line stopped giving blood return on Sunday I thought nothing of it. I still tried every morning, to no avail, but I thought as long as the meds go in without a hitch, now worries.
Since the dressing change Saturday morning, the insertion site had been draining this weird yellow fluid. It hardens under the dressing and becomes super irritant. The drainage stops and starts for no apparent reason. By Tuesday morning there was quite a bit, so I made an appointment to get the dressing changed early (usually every 7 days, but can be done as required).
The nurse at the CCAC clinic wasn't pleased with it. She said its good its not pus and no pain or redness, but its not really supposed to drain. She also couldn't get blood return. She said policy is that if the line doesn't give blood return, it can't be used. She said I had to go to the facility that placed the line to get it taken care of right away. Problem is, I got it inserted at the children's hospital. That hospital is right across from my place (I can literally see the waiting room in my doctor's office from my living room). It takes me about an hour to get from my place/children's hospital to the CCAC clinic. Meanwhile, the General hospital is right down the street from CCAC. Not wanting to risk getting to Children's and being sent right back to the General because I am over 18, I decided to stop in at the General first and see where they suggested I go. They said to stay at general, since Children's would like not see me (thank fully! Saves 1-2 hours of traveling on the bus, back and forth).
I checked in just after 2:30, and was called back from the waiting room at about 3:30. The nurse who I was assigned to was the same time I had 2 weeks ago on July 9th. She recognized me. Not sure if that is good or not. She tried getting blood return. As usual, flushing was fine, but no blood to aspirate. She said it is odd, usually a problem they only see when people have had a line for long periods of time, eg., months, But she also said vancomycin is known to be bad for blogging lines. Hence, the need for a PICC line... I still have the bruise from the peripheral line placed in the ER July 9th.
My plumbing wasn't plumbing as it should. Super easy to fix apparently! The nurse injected what I can only describe as the medical version of liquid plumr or drano in the PICC line, put a cap on the line and told me to come back in and hour. It is called CathFlo (Alteplase), a tissue plasminogen activator (and I know what that means now that I am a nursing student!).
Fast forward an hour, after sitting int he hospital cafe reading a book on 13th cenury England, I returned, and low and behold, we had blood flow! Plumbing restored!
Never have I been so happy to see my blood in a plastic tube, outside of my body where it should be!
To do things all proper, the doctor then saw me for all of 3 second, basically "How are you feeling? Nice to meet you! Bye'.
And I was out the door.
I went to Dollarama to pick up some more of the Burt's Bees Gud products. Only saw the conditioner the other day. Discovered body wash and body lotion today. Then took the bus home, stopped at shoppers to buy a pizza to eat this weekend, and nothing much else. Pretty nasty headache since I left the hospital just before 5pm. Totally ready for bed and hoping I get blood return tomorrow so I can start the vancomycin infusion without yet another trip to emerge (that's five times this year now.... enough to last me a life time).
Last thing before bed - here is arm today. Bruise is fading slowly but still quite visible.
Also, you can;t see it but there is a dressing over the insertion site. Nurse used a different one than usual because it hurt quite a bit getting the tegaderm off today.
Tuesday, July 21, 2015
Waiting to wait - How to pass the time when your stuck sitting on your butt
As you probably already know, I am currently waiting to have surgery number four. Or, as I like to say, waiting to start waiting. After surgery number four (in which 2 inches of my tibia are cut out), I won't be able to walk on my right leg for three months as I am pumped full of antibiotics to evict any lingering squatters (bacteria cells) in the surrounding soft tissue. Once the three months are up, I will have surgery number five to have a bone graft, which will be followed by more waiting until I am healed enough to walk on my own. This equates to 4-5 months of sitting on my butt, binge watching Netflix (fifth season of Walking Dead coming out this fall!), eating chocolate, and feeling a tad resentful towards all the healthy people with two fully functioning legs. So right now I am waiting to have the surgery that will lead to more waiting before the other surgery which will result in even more waiting. Hope that makes sense...
As some of you might also know, I have had three surgeries before, all for the exact same issue. I like to think that I am getting the hang of things by now, which is evident by my awesome planning skills. My last surgery was in April 2012. I prepared by buying new pajamas and slippers, scarves, earrings and necklaces to make me feel pretty even if I hadn't showered in a week (thank you very much surgical incision and PICC line), and dying my hair. I thought I was smart - I would be comfy, well dressed, and stylish. Fast forward post surgery - totally not worth it. I had prepared nothing. NOTHING, to get me through the following months. I found myself binge watching E.R.. No dates to go out with friends or have visitors, no planned outings other than doctors appointments (god send, good excuse to get out of the house and interact with other human beings), no new books to read, no puzzles, no crafts, nothing... it was mind numbing.
But I have learned, and like to think I am smarter for suffering through the boredom. I am preparing this time while I still feel well enough (sort of) and have the ability to propel myself to the mall on my own two feet. So, I am stock piling, hoarding things (hey, I have 4-5 months of time to kill. That requires a hell of a lot of stuff) that will keep me busy and do not require me to get off my butt.
Here is some of what I have so far. I have realized it is not about looking good (or even normal), but staving off mind numbing boredom. Hopefully my ideas will be inspirational to anyone reading this who i also waiting for surgery and a whole lot of sitting and eating chocolate.
Giraffe key chain - will hang it off the horrid blue bag (pictured in this post). The one no self-respecting woman would willfully use as a fashion accessory... I have been trying to find these key chains in Canada for year. The brand is NICI. They are easy to get a hold of when I visit my relative in Holland, but much harder to find around here. Dollarama, 2$. Made my day.
Paper flower making kits, also from Dollarama. 2$ each. They are pre-cut, so I don't have to worry about accidentally maiming my PICC line/IV tubing. Great way to spend an afternoon and decorate a room, or to go along with a birthday gift.
Pocket sudokus! Two in each pack. Dollarama, 1$ a pack. Great for taking to doctors appointments (my surgeon has a check in time, not an appointment time. Could sit in the waiting room anywhere from ten mintues to three hours). Small and convenient, fits into a purse easily.
Colouring books! Both from Dollarama. Harry Potter - 1$ each; Make Your Own Castle - 2$. Nobody is every to old to cooler. Great stress relief.
Toiletries! Showering is already time consuming and difficult with the PICC line in. It will only become worse once I have the surgery number four (PICC line, can't stand on right leg, surgical incision can't get wet) and then number five (hopefully no more PICC line, new surgical incision on right leg, incision around left hip from bone graft). Products that make you feel good are a must. I treated myself to a new face cleanser (Bert's Bees, Shoppers Drugmart, 14.99$), Bert's Bees conditioner (a steal at Dollarama - 3$ a bottle), and nice smelling hand soap. Not pictured - Utterly Smooth cream for dry skin, Nivea lip butter, Bert's Bees lip chap, Yardley bar soap). Also, wet wipes are a god send, especially those first few days after surgery when you try to move as little as absolutely possible... except for going to the bathrooms. A little pain is worth it to avoid a bedpan.
Took another picture anyways... Nivea lipchap with sunscreen, because the Septra (oral antibiotic I am on) causes photo sensitivity). Utterly Smooth cream - amazing for feet), and Herbacin which adore. For years my knucles and hands have become dry and chapped every winter, cracking and bleeding and generally being extremely painful. Until I discovred this stuff!
I have fallen in love with minions. Maybe it is the kid within me, or maybe an escape from the bone infection and feeling cruddy, but they make me happy and laugh. Water bottle from Walmart (7.99$), and colouring books and stickers from Micheals (stickers 1.50$, two colouring books 1$ each, and coluring book with two posters inside 4.99$). Still planning on buying the make your own minion plush kit as well.
Puzzle books! Giant book from Coles for 9.99$ and Sodoku from Dollarama for 2$. Hopefully will keep my brain from slowly rotting, making me turn into one of the zombies on Walking Dead...
I plan to buy several more puzzle books. Just waiting for the Summer addition of the Penny Press one to go on sale.
Head bands - head bands are easy, comfortable, and stylish. They also hide how greasy your hair is...
The yellow one, elephants, black and white, and the solid one on the right are from Ardenes, 4 for 10$, and the black one with red and white flowers is from Dollarama, 1$). Added to the already large collection of headbands, picturesd below.
I have some more somewhere at home in St. Catharine as well.
Plush Giraffe, gift shop at the hopsital, 8$. Bought it after being discharged from the ER on July 9th. after I got the peripheral line placed and my first dose of vancomycin. It's a comfort thing. Never to old for plush toys.
Small body pillow from Ikea, 5.99$. Got it from my mum July 10th, after the PICC line was placed in. I was exhuasted, but we both needed to eat. Stressful day. And going to Ikea for Swedish meatballs after medical stuff has become kind of a tradition for use. We have been doing it for years because it is on the way home from Hamilton to St. Catharines from both hospitals I go to in Hamilton (Children's for infectious disease and General for orthopedic surgeon). It is cheerful with the added bonus of being comfy, the number one I will need when stuck on my butt.
Magazines - I started collecting the ones I really like a month or so ago. I haven't ready any of them yet. Call it a combination of being busy with school and being to tired to focus on anything. Still plan to buy some more before surgery. They are wonderful when you want to do something but are to tired to concentrate for long because most of the articles are short and looking at pretty pictures doesn't require much thinking. Plan to buy some more before surgery next month.
Books! For when I am hopefully feeling a bit better after the next surgery. All from the book depot. And a 10$ gift card for Book Outlet I have been saving for surgery. Hope to find a nice big puzzle book.
And, wide brimmed sun hat! Allows me to go outside a bit without turning into a bloody tomato. Thanks a lot Septra! Not.
I have a tone of embroidery projects waiting for me in St. Catharines, including an afghan blanket with 20 large embroidery squares on it. That is my big project for the recovery periods -10 squares on the blanket. I don't plan to make the designs I use match or coordinated. Just a fun, funky mismatched blanket as a reminder of what is hopefully the final slew of treatment to kick the bone infection out. My tibia is not a retirement it home. It is a five star hotel, at best. But more like a seedy motel along the side of a deserted highway. Point is, its time for those little damn cells to pack up and get out.
There are some things I want to embroider for Christmas. I know, I know. Christmas is 5 months away. But hear me out. I won't be able to get anywhere on my own after surgery four, due to the missing two inches of my tibia thing and all, and then in way to much pain after surgery five (probably end November or begin December). If I want to get people gifts and have it be a surprise, I have to start working on it now.
Plan is to brush up on my Latin skills a bit. Sum, es, est, sumus, estis, sunt and all that.
Binge watch Walking Dead. Not going to do E.R again. Being a nursing student and learning how things really work has kind of ruined all that for me.
Might start rereading Lord of the Rings. Will definitely play lots of Lord of the Rings online! Might get more involved in kin activities.
Sort through the music on my mp3 player. That things that is always on my to-do list but never actually gets done.
Lots of sleeping. Not a lot of doing. Doing anything. Literally. I will be doing lots of nothing.
And likely not bingeing on the chocolate as much as I say I will... Chocolate + sitting on butt all day = bad combination.
And perhaps most importantly, I am going to make plans to get out the house, even if it means renting a wheelchair for the day. The worst part of being ill/recovering from surgery is the isolation. You quickly learn who real friends are. Last time around I had one person visit me. One. That was harsh. The isolation and loneliness border on cruelty. That might sound dramatic, but it is true. The same walls start to look really small after a few weeks. Doctors appointments help, but they are no match for interacting with the people you love and doing non medical related things.
And that is how I plan to keep myself busy for the next half a year. Finish the semester (3 1/2) weeks, wait fur surgery (August 26), and then do a whole lot more waiting while I try to keep my brain from rotting. I might already feel like a zombie, but that doesn't mean I have to become one!
As some of you might also know, I have had three surgeries before, all for the exact same issue. I like to think that I am getting the hang of things by now, which is evident by my awesome planning skills. My last surgery was in April 2012. I prepared by buying new pajamas and slippers, scarves, earrings and necklaces to make me feel pretty even if I hadn't showered in a week (thank you very much surgical incision and PICC line), and dying my hair. I thought I was smart - I would be comfy, well dressed, and stylish. Fast forward post surgery - totally not worth it. I had prepared nothing. NOTHING, to get me through the following months. I found myself binge watching E.R.. No dates to go out with friends or have visitors, no planned outings other than doctors appointments (god send, good excuse to get out of the house and interact with other human beings), no new books to read, no puzzles, no crafts, nothing... it was mind numbing.
But I have learned, and like to think I am smarter for suffering through the boredom. I am preparing this time while I still feel well enough (sort of) and have the ability to propel myself to the mall on my own two feet. So, I am stock piling, hoarding things (hey, I have 4-5 months of time to kill. That requires a hell of a lot of stuff) that will keep me busy and do not require me to get off my butt.
Here is some of what I have so far. I have realized it is not about looking good (or even normal), but staving off mind numbing boredom. Hopefully my ideas will be inspirational to anyone reading this who i also waiting for surgery and a whole lot of sitting and eating chocolate.
Giraffe key chain - will hang it off the horrid blue bag (pictured in this post). The one no self-respecting woman would willfully use as a fashion accessory... I have been trying to find these key chains in Canada for year. The brand is NICI. They are easy to get a hold of when I visit my relative in Holland, but much harder to find around here. Dollarama, 2$. Made my day.
Pocket sudokus! Two in each pack. Dollarama, 1$ a pack. Great for taking to doctors appointments (my surgeon has a check in time, not an appointment time. Could sit in the waiting room anywhere from ten mintues to three hours). Small and convenient, fits into a purse easily.
Colouring books! Both from Dollarama. Harry Potter - 1$ each; Make Your Own Castle - 2$. Nobody is every to old to cooler. Great stress relief.
Toiletries! Showering is already time consuming and difficult with the PICC line in. It will only become worse once I have the surgery number four (PICC line, can't stand on right leg, surgical incision can't get wet) and then number five (hopefully no more PICC line, new surgical incision on right leg, incision around left hip from bone graft). Products that make you feel good are a must. I treated myself to a new face cleanser (Bert's Bees, Shoppers Drugmart, 14.99$), Bert's Bees conditioner (a steal at Dollarama - 3$ a bottle), and nice smelling hand soap. Not pictured - Utterly Smooth cream for dry skin, Nivea lip butter, Bert's Bees lip chap, Yardley bar soap). Also, wet wipes are a god send, especially those first few days after surgery when you try to move as little as absolutely possible... except for going to the bathrooms. A little pain is worth it to avoid a bedpan.
I have fallen in love with minions. Maybe it is the kid within me, or maybe an escape from the bone infection and feeling cruddy, but they make me happy and laugh. Water bottle from Walmart (7.99$), and colouring books and stickers from Micheals (stickers 1.50$, two colouring books 1$ each, and coluring book with two posters inside 4.99$). Still planning on buying the make your own minion plush kit as well.
Puzzle books! Giant book from Coles for 9.99$ and Sodoku from Dollarama for 2$. Hopefully will keep my brain from slowly rotting, making me turn into one of the zombies on Walking Dead...
I plan to buy several more puzzle books. Just waiting for the Summer addition of the Penny Press one to go on sale.
Head bands - head bands are easy, comfortable, and stylish. They also hide how greasy your hair is...
The yellow one, elephants, black and white, and the solid one on the right are from Ardenes, 4 for 10$, and the black one with red and white flowers is from Dollarama, 1$). Added to the already large collection of headbands, picturesd below.
I have some more somewhere at home in St. Catharine as well.
Plush Giraffe, gift shop at the hopsital, 8$. Bought it after being discharged from the ER on July 9th. after I got the peripheral line placed and my first dose of vancomycin. It's a comfort thing. Never to old for plush toys.
Small body pillow from Ikea, 5.99$. Got it from my mum July 10th, after the PICC line was placed in. I was exhuasted, but we both needed to eat. Stressful day. And going to Ikea for Swedish meatballs after medical stuff has become kind of a tradition for use. We have been doing it for years because it is on the way home from Hamilton to St. Catharines from both hospitals I go to in Hamilton (Children's for infectious disease and General for orthopedic surgeon). It is cheerful with the added bonus of being comfy, the number one I will need when stuck on my butt.
Magazines - I started collecting the ones I really like a month or so ago. I haven't ready any of them yet. Call it a combination of being busy with school and being to tired to focus on anything. Still plan to buy some more before surgery. They are wonderful when you want to do something but are to tired to concentrate for long because most of the articles are short and looking at pretty pictures doesn't require much thinking. Plan to buy some more before surgery next month.
Books! For when I am hopefully feeling a bit better after the next surgery. All from the book depot. And a 10$ gift card for Book Outlet I have been saving for surgery. Hope to find a nice big puzzle book.
And, wide brimmed sun hat! Allows me to go outside a bit without turning into a bloody tomato. Thanks a lot Septra! Not.
I have a tone of embroidery projects waiting for me in St. Catharines, including an afghan blanket with 20 large embroidery squares on it. That is my big project for the recovery periods -10 squares on the blanket. I don't plan to make the designs I use match or coordinated. Just a fun, funky mismatched blanket as a reminder of what is hopefully the final slew of treatment to kick the bone infection out. My tibia is not a retirement it home. It is a five star hotel, at best. But more like a seedy motel along the side of a deserted highway. Point is, its time for those little damn cells to pack up and get out.
There are some things I want to embroider for Christmas. I know, I know. Christmas is 5 months away. But hear me out. I won't be able to get anywhere on my own after surgery four, due to the missing two inches of my tibia thing and all, and then in way to much pain after surgery five (probably end November or begin December). If I want to get people gifts and have it be a surprise, I have to start working on it now.
Plan is to brush up on my Latin skills a bit. Sum, es, est, sumus, estis, sunt and all that.
Binge watch Walking Dead. Not going to do E.R again. Being a nursing student and learning how things really work has kind of ruined all that for me.
Might start rereading Lord of the Rings. Will definitely play lots of Lord of the Rings online! Might get more involved in kin activities.
Sort through the music on my mp3 player. That things that is always on my to-do list but never actually gets done.
Lots of sleeping. Not a lot of doing. Doing anything. Literally. I will be doing lots of nothing.
And likely not bingeing on the chocolate as much as I say I will... Chocolate + sitting on butt all day = bad combination.
And perhaps most importantly, I am going to make plans to get out the house, even if it means renting a wheelchair for the day. The worst part of being ill/recovering from surgery is the isolation. You quickly learn who real friends are. Last time around I had one person visit me. One. That was harsh. The isolation and loneliness border on cruelty. That might sound dramatic, but it is true. The same walls start to look really small after a few weeks. Doctors appointments help, but they are no match for interacting with the people you love and doing non medical related things.
And that is how I plan to keep myself busy for the next half a year. Finish the semester (3 1/2) weeks, wait fur surgery (August 26), and then do a whole lot more waiting while I try to keep my brain from rotting. I might already feel like a zombie, but that doesn't mean I have to become one!
Friday, July 17, 2015
Cranky
Cranky and tired. Been one of those days...
Four more weeks of school. Five and a half until surgery. Can't fail any of my courses anymore. Moving most of stuff back home next week so I can stay there and be more comfortable. Only have to be up in Hamilton Sunday night to Tuesday afternoon for school. Just a matter of waiting and getting through each day.
Four more weeks of school. Five and a half until surgery. Can't fail any of my courses anymore. Moving most of stuff back home next week so I can stay there and be more comfortable. Only have to be up in Hamilton Sunday night to Tuesday afternoon for school. Just a matter of waiting and getting through each day.
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| Me today. Pretty fried. Still have to take a shower tonight so I am clean when I go to clinic tomorrow to get my dressing changed. |
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| Me, yesterday, in my new minions t-shirt. I know its not Halloween (yet!), but it was on sale for 5$, and I love minions!). At Micheals there are make your own plush minion kits. I am going to buy one next week and make it between the end of the semester and surgery. |
Wednesday, July 15, 2015
Just ound out...
.... I won't be allowed to continue going to my clinical placement now that the PICC line is in, even though my infectious disease specialist said it is ok. The dean of the program said it's not allowed.
There were mixed feelings when I found this out today. On the one hand, it really sucks, because we only have so many clinical hours to begin with. Losing the next four twelve hour shifts, plus the one from last week when I was sent home, is a big loss of hours and time to practice my skills. On the other hand, I'm still exhausted. I'm not any where near as tired as I was last week, but I definitely don't have tons of energy either. Walking up at 4 am and being on my feet all day wouldn't help anything. Plus, how on earth do you care for patients when they keep asking you about your own medical problems that are clearly visible by the PICC line?
On a bright note, the school will probably let me pass the clinical component of the semester despite missing the last 4 weeks. I am just finishing the last big clinical assignment this week since I got all the information I needed the last time I was in clinical, week before last, and then I can write the IV math test whenever works for me. After that It is just a reflection, self evaulation, and peer evaluation, easypeasy.
The rest of my courses are going well. I think I have either already passed everything or only need ridiculously low grades on the next set of tests to pass any of my classes (e.g., I need 42% on the next Health Sciences test to pass the course, or 21% on both the next test and the final exam). Working hard throughout the semester definitely paid off! So now I am just focusing on finishing up school work, and counting the days until the semester ends, moving back home, and surgery. Oh, and the zoo! I want to go to the zoo for my birthday next month (energy levels permitting). My mum has suggested several times that we rent a wheelchair for the day, but I am not sure... I get enough people staring at me with the PICC line as is. That being said, the zoo! I really want to go. If renting a wheelchair means I don't exhaust myself by walking all day and I get to see the penguins at feeding time, it might be worth it.
There were mixed feelings when I found this out today. On the one hand, it really sucks, because we only have so many clinical hours to begin with. Losing the next four twelve hour shifts, plus the one from last week when I was sent home, is a big loss of hours and time to practice my skills. On the other hand, I'm still exhausted. I'm not any where near as tired as I was last week, but I definitely don't have tons of energy either. Walking up at 4 am and being on my feet all day wouldn't help anything. Plus, how on earth do you care for patients when they keep asking you about your own medical problems that are clearly visible by the PICC line?
On a bright note, the school will probably let me pass the clinical component of the semester despite missing the last 4 weeks. I am just finishing the last big clinical assignment this week since I got all the information I needed the last time I was in clinical, week before last, and then I can write the IV math test whenever works for me. After that It is just a reflection, self evaulation, and peer evaluation, easypeasy.
The rest of my courses are going well. I think I have either already passed everything or only need ridiculously low grades on the next set of tests to pass any of my classes (e.g., I need 42% on the next Health Sciences test to pass the course, or 21% on both the next test and the final exam). Working hard throughout the semester definitely paid off! So now I am just focusing on finishing up school work, and counting the days until the semester ends, moving back home, and surgery. Oh, and the zoo! I want to go to the zoo for my birthday next month (energy levels permitting). My mum has suggested several times that we rent a wheelchair for the day, but I am not sure... I get enough people staring at me with the PICC line as is. That being said, the zoo! I really want to go. If renting a wheelchair means I don't exhaust myself by walking all day and I get to see the penguins at feeding time, it might be worth it.
Disconnected
Last night of freedom from my IV pump tonight. My last single dose gravity IV bag is infusing right now. Only about 10 minutes left to go, then I can disconnect, flush the line, and go to bed. Tomorrow morning I start using a new pump and IV bags. The new bags are double dose, so I don't have to disconnect myself after each infusion ends and reconnect later in the day to start the second infusion. Because this is how the bags work, they deliver a very very small amount of fluid over the course of the day (keep vein open). So I wake up, switch iv bags, get my antibiotics for 2 hours, then the pump infuses a couple milliliters per hour for 10 hours, before infusing the antibiotics again four two hours, at which point I am asleep, and then infusing a few ml per hour again until the morning when I switch iv bags and the whole thing starts over. As a result, I am connected to my pump and tubing 24/7. At the moment I disconnect completely during the night and most of the day after my infusion ends. So, tonight is my last night of freedom away from the pump. As of tomorrow morning, I will be connected continuously for the next 3 or so months...
I am not sure how to feel about this. It doesn't really matter though, does it? I don't have a choice.
The last few days I have still been feeling pretty run down and generally exhausted. I still look horrible (sunken eyes with shadows under them, tired eyes, etc). If I was otherwise healthy, I would resign my self to feeling ill and lying in bed all day. As it is though, I am not healthy, but I feel a whole lot better compared to last week. So even though I still feel horrible, I feel much less horrible then last week, giving the feeling that I am better, even though I am far from is. This is the new normal, I suppose. It is amazing how my bad days, and what most people would consider a day to take of sick, are now my good days. Nothing like chronic illness to make you realize how vulnerable life is, how easily we can loss the invincibility young people think they have.
I am not sure how to feel about this. It doesn't really matter though, does it? I don't have a choice.
The last few days I have still been feeling pretty run down and generally exhausted. I still look horrible (sunken eyes with shadows under them, tired eyes, etc). If I was otherwise healthy, I would resign my self to feeling ill and lying in bed all day. As it is though, I am not healthy, but I feel a whole lot better compared to last week. So even though I still feel horrible, I feel much less horrible then last week, giving the feeling that I am better, even though I am far from is. This is the new normal, I suppose. It is amazing how my bad days, and what most people would consider a day to take of sick, are now my good days. Nothing like chronic illness to make you realize how vulnerable life is, how easily we can loss the invincibility young people think they have.
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| Tired, but much better than last week. |
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| Priming my last gravity IV bag tonight! |
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| The bruising from the PICC line insertion is slowly going away. It looks like the blood/bruise is fading as is slowly moves farther from the insertion site. |
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Peripheral IV site bruise from last Thursday, taken out the following day. It only took one dose of vancomycin - shows how potent the stuff is in veins. BTW this last one is from last night. |
Tuesday, July 14, 2015
Self sufficient
I did everything myself this morning, from checking for blood return, flushing my line (I can smell the saline going in. How weird is that?!?), priming my iv tubing, and spiking my a iv bag. I also showered this morning (saran wrap and packing tape is my new best friend). And, because its lab day at school, I get to wear my scrubs to class. Feeling comfy and proud of myself =)
Only thing is I can't get my scrub top on... it is extra small. Still way to big (the sizes are really odd), but the neck whole it tiny. Makes getting the top off way to difficult when both my arms are completely free = not even going to try with the PICC line and IV tubing.
Still pretty much exhausted (and do I look it!), but the spacey feeling in my head is slowly going away and I am actually managing to get some school work done. I am so happy I worked so hard in reading week; gave me some leeway to work less hard for the rest of the semester.
I have the afternoon and tomorrow off, so I will try to update on everything in the next day or so.
Also exciting news - my double dose iv bags designed for a PICC line arrive today with a new iv pump! Yay! No more fighting with gravity bags!
Only thing is I can't get my scrub top on... it is extra small. Still way to big (the sizes are really odd), but the neck whole it tiny. Makes getting the top off way to difficult when both my arms are completely free = not even going to try with the PICC line and IV tubing.
Still pretty much exhausted (and do I look it!), but the spacey feeling in my head is slowly going away and I am actually managing to get some school work done. I am so happy I worked so hard in reading week; gave me some leeway to work less hard for the rest of the semester.
I have the afternoon and tomorrow off, so I will try to update on everything in the next day or so.
Also exciting news - my double dose iv bags designed for a PICC line arrive today with a new iv pump! Yay! No more fighting with gravity bags!
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| Me and my iv pole hagning out last night |
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| The bruise left on my arm from the peripheral IV placed on Thursday... |
Sunday, July 12, 2015
"I'll only scratch for a minute, I promise!"
Lie. Complete lies. If I could scratch my arm right now, I would scrape off all the skin in the process. I forgot how much itching accompanies a PICC line. Between Friday when I got the PICC placed and this afternoon, no itching at all. Early this evening, maybe a tiny bit here and there. I though "it comes and goes before I can even do anything about it. I can totally live with this". And then I showered, arm wrapped in saran wrap and packing tape. Got out of the shower, everything fine. Dried off; still fine. Peeled of my lovely wrapping job, and NOT FINE. Itch itch itch. Like a swarm of angry misquotes attacked me, and only stung me in that one spot. And then the realization that the lovely patch of skin trapped under the tegaderm dressing won't be accessible for the next 3-4 months. And all I want to do it scratch! Who would have thought it was possible for one bit of skin to be so incredibly irritating... It's like being a kid again, knowing where the cookie jar is kept but being to short to reach it by an inch. That is me and my arm. Just replace the cookie with scratching, and that one inch with what essentially is saran wrap covering my skin, tempting me, allowing me to see through to the itchy bruised, sore skin below but preventing me from doing anything about it. That's even worse than not being able to reach the cookie jar. That's like saying "Here you go; you can hols the cookie, you can smell the cookie, you can see the cookie. It's in your possession. But don't eat it!" and then leaving the kid alone for an hour. You know the kid is going to eat the damn cookie...
Saturday, July 11, 2015
Still Awake
The home care nurse just left. She came at 10:20 and stayed till 11:45. She got the infusion running and then we went through all the paper work. I really liked her and think she did a great job. I also forgot her name already - blame it on fatigue, a long and stressful day, and being introduced to way to many people (in person and over the phone) over the last 33ish hours since being in the E.R. She is younger than the nurses i had in 2012; I think this help, there is more we can both relate too. Sometimes I feel the older nurses don't always "get it", it being a young person who is chronically ill.
I am going to nap now while my infusion finishes, wake up to disconnect myself, and get to sleep for real. Have to be up 8:00 to make it to clinic on time.
The bruise left from the peripheral IV placed in the E.R. yesterday afternoon.
First infusion at home!
Supplies to disconnect myself later tonight:
I don't know any self-respecting woman who would choose to have this as a fashion accessory, but it will be my friend for at least the next 3 months.
Only 43 minutes left to go!
And here is the other arm and the bruise from the peripheral IV that was place this morning because the vancomycin would have destroyed the other vein. Thankfully not as bad as the left arm.
It is really weird to think that there is not something inside of me, traveling from my arm to my heart, that was not there a mere twelve hours ago. Something inanimate that is no a part of me, but will, over time, feel like it is...
I am going to nap now while my infusion finishes, wake up to disconnect myself, and get to sleep for real. Have to be up 8:00 to make it to clinic on time.
The bruise left from the peripheral IV placed in the E.R. yesterday afternoon.
First infusion at home!
I don't know any self-respecting woman who would choose to have this as a fashion accessory, but it will be my friend for at least the next 3 months.
Only 43 minutes left to go!
And here is the other arm and the bruise from the peripheral IV that was place this morning because the vancomycin would have destroyed the other vein. Thankfully not as bad as the left arm.
It is really weird to think that there is not something inside of me, traveling from my arm to my heart, that was not there a mere twelve hours ago. Something inanimate that is no a part of me, but will, over time, feel like it is...
Friday, July 10, 2015
"It" is in
I got my PICC line placed today. I wasn't expecting it until sometime next week, but one of the technicians told me that my infectious disease specialist (she is the chief of medicine) came to talk to the head guy in the department, and voula, I got an appointment to have my PICC placed. I arrived just before the appointment, which was at 1:30, and the procedure was completely done by 2:45. It has been a busy day. Far too busy, and I am way to tired to update (and I need to finish up with yesterday first anyways). Also, have had way more phone calls in the last 24 hours than I have had in months. All the info I get is important but also tiring... too much to absorb in one day, leaving me wishing that I could just turn my phone of. I am super impressed with how fast the system organized everything. Within the span of a day, everything has been planned and worked out.
I am waiting for my first home care visit tonight, and hopefully a good nap while the vancomycin infuses. I will end with a picture of me and my new best/worst friends:
I am waiting for my first home care visit tonight, and hopefully a good nap while the vancomycin infuses. I will end with a picture of me and my new best/worst friends:
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| I was completely wiped at that point. I have no clue why I was holding the camera like that. Also, my new shirt! Love elephants! |
Thursday, July 09, 2015
"It" Happened
"It" being the PICC line, a dreaded but necessary evil.
Well, not quite.
For now I have a periphery IV, but the goal is to have a PICC line placed sometime early next week. At least the iv is in my left forearm, so I can still do things (you don't realize how many things require moving your elbows or wrists until you can't move use them at all). And my writing hand remains free - no pass on school work. Bummer. Kidding. I am a nerd. I love school.
We aren't really sure why I keep having issues (read: new small sores opened on shin at the start of the week). Theoretically speaking, I am on so much antibiotics that the infection shouldn't be doing anything at all. But here we are, anyways. It is quite frustrating. After becoming progressively more and more tired, yet sleeping as much as 15 hours yesterday and not feeling any better, I said enough is enough. No more toughing things out.
Long story, which I won't tell tonight because I am fried: I ended up in the emergency room. My infectious disease specialist and the E.R. doctor spoke over the phone. And I am not the proud owner of a periphery iv that got to come home with me, and nasty bruise forming around it, and bruise int he other arm from when the nurse had to re-do my blood work because what she got wasn't enough (she was really kind and did her best! not her fault my veins are shoddy after so many pokes over the years).
I will likely be on IV vancomycin until surgery on August 26. It might be switched up after that, depending on if the samples sent to the lab grow anything or not (lets all keep our fingers crossed that those little bacteria calls grow... but not in me; in a petri dish!).
I am not waiting for the pharmacy to deliver my iv pump, iv pole, medication, and other paraphernalia. Tomorrow I have my first appointment with CCAC. It is not until 11am, so at least I can get a lot of sleep tonight.
I have lots to write, but I am crashing hard, and that is saying something, because I was already like a zombie when I woke up this morning.
Here are some pictures from today. They are crappy, taken with my phone, but they show how horrible I felt.
Well, not quite.
For now I have a periphery IV, but the goal is to have a PICC line placed sometime early next week. At least the iv is in my left forearm, so I can still do things (you don't realize how many things require moving your elbows or wrists until you can't move use them at all). And my writing hand remains free - no pass on school work. Bummer. Kidding. I am a nerd. I love school.
We aren't really sure why I keep having issues (read: new small sores opened on shin at the start of the week). Theoretically speaking, I am on so much antibiotics that the infection shouldn't be doing anything at all. But here we are, anyways. It is quite frustrating. After becoming progressively more and more tired, yet sleeping as much as 15 hours yesterday and not feeling any better, I said enough is enough. No more toughing things out.
Long story, which I won't tell tonight because I am fried: I ended up in the emergency room. My infectious disease specialist and the E.R. doctor spoke over the phone. And I am not the proud owner of a periphery iv that got to come home with me, and nasty bruise forming around it, and bruise int he other arm from when the nurse had to re-do my blood work because what she got wasn't enough (she was really kind and did her best! not her fault my veins are shoddy after so many pokes over the years).
I will likely be on IV vancomycin until surgery on August 26. It might be switched up after that, depending on if the samples sent to the lab grow anything or not (lets all keep our fingers crossed that those little bacteria calls grow... but not in me; in a petri dish!).
I am not waiting for the pharmacy to deliver my iv pump, iv pole, medication, and other paraphernalia. Tomorrow I have my first appointment with CCAC. It is not until 11am, so at least I can get a lot of sleep tonight.
I have lots to write, but I am crashing hard, and that is saying something, because I was already like a zombie when I woke up this morning.
Here are some pictures from today. They are crappy, taken with my phone, but they show how horrible I felt.
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| At home this morning, after I saw sent home from clinical |
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| In the emergency room, waiting to be seen. My eyes where burning at this point. That is how tired I was... |
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| My lovely new fashion accessory. I don't like it, but it might make me feel better... or at least the stuff pumped through it. |
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| Infusing. Only took an hour, and after that I was done and free to go! |
Monday, July 06, 2015
Hair cuts, strawberries, and bone infections
I spent the evening trying to come up with some witty introductory line to this post, but honestly, there are only so many ways you can say "I'm tired," before there's nothing more to add. So I will just state what you probably already know without me telling you: I'm tired.
As previously posted, I felt horrible last week Wednesday. So horrible that I used the super cool wish I had been given it ages ago number that gets my infectious disease specialist paged instantly, and her calling me within minutes. There have been some points in the past where I really needed to get in touch with her but we ended playing phone tag through the receptionist... not cool. Anyways, back to the point. My ID specialist called me back within 3 minutes, on a freaking holiday! How much more awesome can it get?!?! Ok, you know you have been sick way to long when awesome if defined as having instant contact with your doctors. I explained how I was feeling; how the fatigue was getting worse and the quality of my sleep was steadily declining even though I was sleeping longer and longer. Plus bone pain. I always seem to forget that, even though it is one of the most unpleasant things I have ever experienced. Because it is not a constant pain, it I easy to say "I'm fine," when it doesn't hurt at that precise moment. ID specialist decided to change up my oral antibiotics, keeping the cephalexin but changing the doxycycline to septra (still reminds me of sepsis, which I noted years ago in a previous post). She said she her her assistant would call me with an appointment the following Wednesday (which I still haven't received, BTW), and to call early in the week if I still feel horrible.
I started the Septra immediately and, knowing that it would take a few days to take affect, resigned myself to feeling cruddy for a few days. I slept a lot. More than a lot. Like 14 hours several nights in a row. Woke up constantly throughout the night; still felt tired all day. I went out shopping on Sunday as a reward for finishing my last major assignment of the semester (only tests and exams left now) - lots of fun, but lots of bone pain, and cold sweats, very cold and clammy. I came home and lay on my bed for most of the day. I was very much looking forward to going to bed, if only to give myself a break from thinking about how cruddy I felt. Except I didn't sleep. I lay in bed for hours. Not cool. I finally fell asleep around 3 am only to wake at 8 to a splitting headache, bone pain, and light-headedness. And fatigue. Can't forget that. I went to my morning psychology class, hoping to feel better once I got up and moving. Didn't work.
I am not the person who calls her doctor for every little ache and pain. I wait stuff out to see if it will get better or not on it's down, and even then, I usually tend to minimize my health issues, thinking "someone else has it worse and needs the doctor more than me". At this point, however, I have been feeling rotten for so long that I have no problem calling in. Trying to struggle through it alone and putting on a brave face won't do me any good. I will only get more tired and feel even more cruddy. So, knowing that I will probably end up with the dreaded PICC line, I called my infectious disease specialists assistant to tell her whats up. I got the answering machine... assistant won't be back until tomorrow, which means probably not getting in to she the doctor until the end of this week or start of next week. At least no PICC line this week... yay? not sure... I then went to my Health Sciences class, came home, and feel asleep. Leg still hurting, splitting headache still raging. I looked as miserable as I felt.
Oh, I also got my hair cut today. I was at the early stages of a mullet, and looked like I had sideburns... Was quite sweaty/clammy and had a massive headache at the hair dressers (2 minute walk from my place), but decided to get it done anyways. I find it is easier to feel a bit better when you think you look good.
I went on my usual walk this evening. Despite the fatigue and bone pain, I try to walk everyday. I have always enjoyed walking, and it is important, I think, to keep up some exercises/physical activity. There are lots of benched on campus, so I usually sit down for a bit at some point.
Now I am back home, showered, and ready for bed. Still tired. Worried about getting through my lab class tomorrow. Really tired - not good shape to learn how to use I.V. pumps...
Completely unrelated, I just had a bowl for strawberries covered in a thin layer of sugar. I always got that when I was little when I visited my family in Holland. A pleasant way to end a meh kind of day.
As previously posted, I felt horrible last week Wednesday. So horrible that I used the super cool wish I had been given it ages ago number that gets my infectious disease specialist paged instantly, and her calling me within minutes. There have been some points in the past where I really needed to get in touch with her but we ended playing phone tag through the receptionist... not cool. Anyways, back to the point. My ID specialist called me back within 3 minutes, on a freaking holiday! How much more awesome can it get?!?! Ok, you know you have been sick way to long when awesome if defined as having instant contact with your doctors. I explained how I was feeling; how the fatigue was getting worse and the quality of my sleep was steadily declining even though I was sleeping longer and longer. Plus bone pain. I always seem to forget that, even though it is one of the most unpleasant things I have ever experienced. Because it is not a constant pain, it I easy to say "I'm fine," when it doesn't hurt at that precise moment. ID specialist decided to change up my oral antibiotics, keeping the cephalexin but changing the doxycycline to septra (still reminds me of sepsis, which I noted years ago in a previous post). She said she her her assistant would call me with an appointment the following Wednesday (which I still haven't received, BTW), and to call early in the week if I still feel horrible.
I started the Septra immediately and, knowing that it would take a few days to take affect, resigned myself to feeling cruddy for a few days. I slept a lot. More than a lot. Like 14 hours several nights in a row. Woke up constantly throughout the night; still felt tired all day. I went out shopping on Sunday as a reward for finishing my last major assignment of the semester (only tests and exams left now) - lots of fun, but lots of bone pain, and cold sweats, very cold and clammy. I came home and lay on my bed for most of the day. I was very much looking forward to going to bed, if only to give myself a break from thinking about how cruddy I felt. Except I didn't sleep. I lay in bed for hours. Not cool. I finally fell asleep around 3 am only to wake at 8 to a splitting headache, bone pain, and light-headedness. And fatigue. Can't forget that. I went to my morning psychology class, hoping to feel better once I got up and moving. Didn't work.
I am not the person who calls her doctor for every little ache and pain. I wait stuff out to see if it will get better or not on it's down, and even then, I usually tend to minimize my health issues, thinking "someone else has it worse and needs the doctor more than me". At this point, however, I have been feeling rotten for so long that I have no problem calling in. Trying to struggle through it alone and putting on a brave face won't do me any good. I will only get more tired and feel even more cruddy. So, knowing that I will probably end up with the dreaded PICC line, I called my infectious disease specialists assistant to tell her whats up. I got the answering machine... assistant won't be back until tomorrow, which means probably not getting in to she the doctor until the end of this week or start of next week. At least no PICC line this week... yay? not sure... I then went to my Health Sciences class, came home, and feel asleep. Leg still hurting, splitting headache still raging. I looked as miserable as I felt.
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| I was really pale, and I got really dizzy when ever I stood up. |
I went on my usual walk this evening. Despite the fatigue and bone pain, I try to walk everyday. I have always enjoyed walking, and it is important, I think, to keep up some exercises/physical activity. There are lots of benched on campus, so I usually sit down for a bit at some point.
Now I am back home, showered, and ready for bed. Still tired. Worried about getting through my lab class tomorrow. Really tired - not good shape to learn how to use I.V. pumps...
Completely unrelated, I just had a bowl for strawberries covered in a thin layer of sugar. I always got that when I was little when I visited my family in Holland. A pleasant way to end a meh kind of day.
Wednesday, July 01, 2015
Big Update
The update I hoped to give last a week and a half ago didn't happen. Chalk it up to fatigue and a small pity party I threw in my own honor. Guests: me, and possibly my mum who very kindly put up with my miserable attitude and helped me talk through everything I am going through. Now that I am over that, had several days of feeling relatively well, and have once more g returned to the land of utter exhaustion, it is time to update. And I typed exhumation instead of exhaustion... I should change that. As much as I feel like a walking corpse of tiredness, I have not died.
That all sounds very dramatic, but it is how I feel. It is not due to lack of sleep, but rather lack of quality sleep.
On May 9th I saw my surgeon expecting to schedule surgery. That didn't happen. He suggested, instead, that we wait until I finished the course of antibiotics (Doxycycline, 100 mg twice a day) at the end of May and see what happens with the infection. He said we would know pretty soon after that (2-3 weeks) it the infection would rear its ugly head once again. I wasn't happy with this - 16 months of antibiotics and surgery several years before hadn't work, so what use could a few extra week of doxycycline be?
The day after, May 10th, I had more of the tiny sores on my shin (infectious disease says they are sinus tracts). I toughed it out for a few days, but the spots persisted until the next Thursday. After playing phone tag for a while during my clinical placement, I was able to book an appointment with my orthopedic surgeon for May 29 (the earliest day there were appointment available).
Several days before the appointment, I started having a lot more bone pain - deep, achy, unpleasant all around. I stopped the doxycycline on May 27th, as planned. Two days later I was sitting in the fracture clinic waiting for my name to be called. As soon as I mentioned the sores on my shin, my surgeon agreed to do surgery. He said it is a bad sign that they keep popping up even when I am on antibiotics. I signed consent forms so the surgery could be scheduled, and went on my way, both nervous about living without 2 inches of my tibia for 3 months, and relieved to have a solid plan. Uncertainty is the hardest part of all this. Surgery gives me a plan, a feeling of control, to cling to.
The bone pain continue over the weekend and on into the next week. And then the fatigue hit. Horrible, draining, fatigue. It actually started as regular tiredness, and slowly progressed, getting worse over time. The bone pain slowly faded as the fatigue got worse.
Monday June 8th I had enough. I called infectious disease to make an appointment. I got through to her assistant and hoped to hear back. I called again on Wednesday 10th. I got through to the main booking desk, who said there were not available appointments until August 18th. I asked to leave a message with my doctor's assistant. Once I hung up I threw my phone onto the bed and burst into tears. I didn't here anything back that. On the 12th I decided to go back on the doxycycline. Infectious disease told me to start taking it again if anything happened, eg. sores on shin, bone pain, feeling really unwell. The morning of June 10th I called infectious disease again. This was the last week my grandfather was visiting from Holland, so my mum picked my up on Tuesday in the evening. Half way home to St. Catharines I got a call from infectious disease's assistant, asking when I could come in. I told her I was on my way home and since I don't have my G2 yet or insurance I couldn't be back into Hamilton until Friday. This is technically untrue - I have clinical on Thursday's but that lasts from 6:30 am to 6:00pm. We only have clinical once a week, and we already lost one week because our instructor has a previous engagement. Plus, it was already week 7 and finally my turn to give meds and injections. So I said Friday.
Thursday was a long and disastrous day. I knew when I opened my eyes at 4:30 that the day would not go well. I was exhausted... again. It was difficult to stay awake on the bus. Several classmates, who have clinical on a different ward, saw me walking into the hospital. They said I looked like a zombie. I felt like one. At that point I began to feel nauseous. You have to take food with the doxycycline or it causes major stomach upset. Sometimes eating doesn't help though. I sat in locker room for at least 15 minutes before my classmates showed up, trying not to throw up. Fortunately that passed after about an hour. Giving meds went well, and I gave my first ever injection (fragmin into a patient's abdomen). By lunch I was more than exhausted. I was spent. It was hard to keep my thoughts straight and answer questions coherently. My classmates and I went to the cafeteria for lunch, I hoped food would give me some much needed energy, but it didn't. My classmates kept joking that I was drugged up, but it was all fatigue. On the way back to our ward I got really pale and apparently looked like I would keel over at any moment. I called it quiets, and decided to head to the E.R. where my surgeon works at. At that point I probably wasn't in good enough shape to give meds or take care of other people. After taking the two buses to General hospital, I called infectious disease to tell her what was going on. I got her assistant. She said she was trying to book me an appointment and I should have waited for her to call me back as she said she would when we spoke the previous Tuesday. She seemed angry I had said I wasn't available until Friday. I asked what about a follow up - surely my specialist would want to see one of her patients after they ended up in the emergency room, and that the doctors in the er. could not provide the same type of care as she could. the assistant maintained what she said; if I went to the e.r. I would not have an appointment booked. Noe remember, at this point I was barely functioning at all. It was hard to get my own thoughts straight, let alone comprehend what someone else was saying to me. I burst into tears on the sidewalk across from the hospital. I told her to stop yelling at me. She said I wasn't. I replied that she was talking very loud and very fast. It sounded like yelling to me (at least, to me over tired brain). I said I just wanted to feel better, trying to explain the whole 9 year ordeal, and that even if I was ok. the day before, I definitely wasn't at the moment. I have never had someone from a hospital talk to me as if was a disobedient child before. It made me feel horrible for being ill...
I went to the e.r.. The very kind nurse working reception (especially in comparison to my doctor's assistant) was very understanding and sympathetic. In the mean time, I missed a call back from the infectious disease assistant. Her message said that if I could be at the children's hospital by 5 pm, that my doctor would see me. At this point it was 3:30. I decided to chance it, and told the e.r receptionist that I would head over to the other hospital. She said good call, as I would have been waiting there for hours. At this point I called my mum, and she said she would rush over from St. Catharines so she could be there with me.
By the time I got the children's hospital, I was done and out of it. My head hurt, my eyelids were heavy, I was flushed and sweaty, and my leg hurt. Mum made it before my doctor arrived, which was a huge plus.
As usually my infectious disease specialist was amazing. She spent a good 45 minutes with us, listening to all our concerns and questions. She agreed I looked horrible - pale and diaphoretic (sweaty). I explained the fatigue, the night sweats, how horribly I had been sleeping, the bone pain, that we still didn't have a date for surgery. I was able to express overall how bad I felt. She pointed out several things to show that she understood. She said:
1) You have a bone infection - that itself will make you feel ill
2) This is a chronic illness and you have been dealing it for over 9 years. Things build up over time
3) There is an emotional and mental aspect of this to deal with
4) Despite evrything, you are still trying to lead a normal life
She hit every nail on the head. I don't know how to explain how alone you feel over time. Friends don't understand. Family stop taking it seriously. Feeling horrible when your peers build up their lives. Jealousy, sadness, anger, etc. etc. It is reassuring that my doctors understand it.
The doctor decided to keep me on the doxycycline and added cephalexin, 750 mg, 4 times a day. She also gave me a number that would have her paged in case I felt exceptionally horrible and couldn't get through to her. She mentioned a PICC line and IV antibiotics but said we should see how I felt on the oral stuff first.
I went home and slept. For several days I felt shitty. I had a pity party. I was needed. It was well deserved. But it was good to get over it by Monday morning. I continued to feel tired. I didn't realize that I was starting to feel better until I began to feel worse at the end of the week. It was my week off. I pushed myself to get ass much school stuff done as possible. I felt accomplished but exhausted. Thursday evening I called infectious disease's assistant because I felt drastically worse again. Saturday evening, just after 7pm (how amazing is that!?!), infectious disease calls. She said to stay on the antibiotics and she would schedule an appointment for a week or so later. Still no surgery date. She said that my blood work was remarkably normal. "Yay?" I think, but still feeling horrible...
Sunday night I went back to Hamilton, staying here 4 weeks straight, which will leave only 3 week in the semester left. Monday was filled with tiredness. My classmates commented how tired I looked. Tuesday was no better. I made it through class, somehow managed to do some cloth shopping (sweat pants for when I have surgery), and then crashed at home. I was really sweaty and a bit feverish on Monday and Tuesday again. I went to bed last night at 9:30pm, and slept until almost 11am. It was not good sleep. I woke up frequently, had night sweats, and generally felt horrible. I want to stress that this is not waking up a bit groggy or hitting snooze once or twice. This is weeks and weeks (over a month now) of sleeping poorly. Waking up constantly, startled out of deep sleep, night sweats... I have tried sleeping less, sleeping more, sleeping with no blankets, sleeping under a pile of blankets. Nothing helps. When I saw infectious disease last, she said that sleep is effected a lot with chronic illness. I am feeling it. Still have bone pain too, which doesn't help. There is no desire to do anything. My brain feels hollow and empty. the industrious student I was last week is not here right now. This afternoon was horrible. It was hard to think straight, eyes didn't want to stay open, temp. sitting at 37.7-37.8. I felt like I was on fire, face burning. Oh, and stomach upset... almost every day now due to the antibiotics. I called the number infectious disease gave me. Within 3 minutes she had been paged and called me back... on a holiday (Canada day). I am impressed. She switched some of my antibiotics around. I am staying on the Cephalexin but am stopping the doxycyclin and switching it with Septra. I was on both of these originally back in 2011. Feels like deja vu. She said if I don't feel better by around Tuesday next week to call her back and we will probably try IV antibiotics, which means getting a PICC line. Let us all hope that these oral antibiotics work. Positive thoughts. I want to avoid the PICC line until absolutely necessary, which is probably surgery. That being said, I feel horrible. If the oral antibiotics don't work, I am willing to try pretty much anything to feel better.
As a big finale, we have a date for surgery: August 26!
So, I can enjoy my birthday (turning 23 on August 23) doing something fun.
The 26th is a Wednesday, so I assume I will be in the hospital over the weekend. Hopefully not, but that is what I suspect. The surgeon said I could be in the hospital between 1-5 days, depending on pain management. Taking the past into account, and how badly the surgeon said this next surgery will hurt, I assume I will be in a few days.
I am going to bed now. It has taken me severla horus to type this all out. I spent most of the day, since getting up, snoozing on the couch, other than heading the pharmacy to get the script for Spetra filled.
Clinical in the morning, which means getting uo at 4:30am. I don't know if I can make it through the day. Just have to think, this is not a sprint, but a marathon to August 26. Slow, and steady. I can do this. Hopefully without the PICC line.
Here is me, several days ago, when I still looked good. I am now at the point I am so tired that smiling is hard. My eyes look squint, and I look like I am grimacing. Good night.
Here is me tonight, doing my best to smile...
That all sounds very dramatic, but it is how I feel. It is not due to lack of sleep, but rather lack of quality sleep.
On May 9th I saw my surgeon expecting to schedule surgery. That didn't happen. He suggested, instead, that we wait until I finished the course of antibiotics (Doxycycline, 100 mg twice a day) at the end of May and see what happens with the infection. He said we would know pretty soon after that (2-3 weeks) it the infection would rear its ugly head once again. I wasn't happy with this - 16 months of antibiotics and surgery several years before hadn't work, so what use could a few extra week of doxycycline be?
The day after, May 10th, I had more of the tiny sores on my shin (infectious disease says they are sinus tracts). I toughed it out for a few days, but the spots persisted until the next Thursday. After playing phone tag for a while during my clinical placement, I was able to book an appointment with my orthopedic surgeon for May 29 (the earliest day there were appointment available).
Several days before the appointment, I started having a lot more bone pain - deep, achy, unpleasant all around. I stopped the doxycycline on May 27th, as planned. Two days later I was sitting in the fracture clinic waiting for my name to be called. As soon as I mentioned the sores on my shin, my surgeon agreed to do surgery. He said it is a bad sign that they keep popping up even when I am on antibiotics. I signed consent forms so the surgery could be scheduled, and went on my way, both nervous about living without 2 inches of my tibia for 3 months, and relieved to have a solid plan. Uncertainty is the hardest part of all this. Surgery gives me a plan, a feeling of control, to cling to.
The bone pain continue over the weekend and on into the next week. And then the fatigue hit. Horrible, draining, fatigue. It actually started as regular tiredness, and slowly progressed, getting worse over time. The bone pain slowly faded as the fatigue got worse.
Monday June 8th I had enough. I called infectious disease to make an appointment. I got through to her assistant and hoped to hear back. I called again on Wednesday 10th. I got through to the main booking desk, who said there were not available appointments until August 18th. I asked to leave a message with my doctor's assistant. Once I hung up I threw my phone onto the bed and burst into tears. I didn't here anything back that. On the 12th I decided to go back on the doxycycline. Infectious disease told me to start taking it again if anything happened, eg. sores on shin, bone pain, feeling really unwell. The morning of June 10th I called infectious disease again. This was the last week my grandfather was visiting from Holland, so my mum picked my up on Tuesday in the evening. Half way home to St. Catharines I got a call from infectious disease's assistant, asking when I could come in. I told her I was on my way home and since I don't have my G2 yet or insurance I couldn't be back into Hamilton until Friday. This is technically untrue - I have clinical on Thursday's but that lasts from 6:30 am to 6:00pm. We only have clinical once a week, and we already lost one week because our instructor has a previous engagement. Plus, it was already week 7 and finally my turn to give meds and injections. So I said Friday.
Thursday was a long and disastrous day. I knew when I opened my eyes at 4:30 that the day would not go well. I was exhausted... again. It was difficult to stay awake on the bus. Several classmates, who have clinical on a different ward, saw me walking into the hospital. They said I looked like a zombie. I felt like one. At that point I began to feel nauseous. You have to take food with the doxycycline or it causes major stomach upset. Sometimes eating doesn't help though. I sat in locker room for at least 15 minutes before my classmates showed up, trying not to throw up. Fortunately that passed after about an hour. Giving meds went well, and I gave my first ever injection (fragmin into a patient's abdomen). By lunch I was more than exhausted. I was spent. It was hard to keep my thoughts straight and answer questions coherently. My classmates and I went to the cafeteria for lunch, I hoped food would give me some much needed energy, but it didn't. My classmates kept joking that I was drugged up, but it was all fatigue. On the way back to our ward I got really pale and apparently looked like I would keel over at any moment. I called it quiets, and decided to head to the E.R. where my surgeon works at. At that point I probably wasn't in good enough shape to give meds or take care of other people. After taking the two buses to General hospital, I called infectious disease to tell her what was going on. I got her assistant. She said she was trying to book me an appointment and I should have waited for her to call me back as she said she would when we spoke the previous Tuesday. She seemed angry I had said I wasn't available until Friday. I asked what about a follow up - surely my specialist would want to see one of her patients after they ended up in the emergency room, and that the doctors in the er. could not provide the same type of care as she could. the assistant maintained what she said; if I went to the e.r. I would not have an appointment booked. Noe remember, at this point I was barely functioning at all. It was hard to get my own thoughts straight, let alone comprehend what someone else was saying to me. I burst into tears on the sidewalk across from the hospital. I told her to stop yelling at me. She said I wasn't. I replied that she was talking very loud and very fast. It sounded like yelling to me (at least, to me over tired brain). I said I just wanted to feel better, trying to explain the whole 9 year ordeal, and that even if I was ok. the day before, I definitely wasn't at the moment. I have never had someone from a hospital talk to me as if was a disobedient child before. It made me feel horrible for being ill...
I went to the e.r.. The very kind nurse working reception (especially in comparison to my doctor's assistant) was very understanding and sympathetic. In the mean time, I missed a call back from the infectious disease assistant. Her message said that if I could be at the children's hospital by 5 pm, that my doctor would see me. At this point it was 3:30. I decided to chance it, and told the e.r receptionist that I would head over to the other hospital. She said good call, as I would have been waiting there for hours. At this point I called my mum, and she said she would rush over from St. Catharines so she could be there with me.
By the time I got the children's hospital, I was done and out of it. My head hurt, my eyelids were heavy, I was flushed and sweaty, and my leg hurt. Mum made it before my doctor arrived, which was a huge plus.
As usually my infectious disease specialist was amazing. She spent a good 45 minutes with us, listening to all our concerns and questions. She agreed I looked horrible - pale and diaphoretic (sweaty). I explained the fatigue, the night sweats, how horribly I had been sleeping, the bone pain, that we still didn't have a date for surgery. I was able to express overall how bad I felt. She pointed out several things to show that she understood. She said:
1) You have a bone infection - that itself will make you feel ill
2) This is a chronic illness and you have been dealing it for over 9 years. Things build up over time
3) There is an emotional and mental aspect of this to deal with
4) Despite evrything, you are still trying to lead a normal life
She hit every nail on the head. I don't know how to explain how alone you feel over time. Friends don't understand. Family stop taking it seriously. Feeling horrible when your peers build up their lives. Jealousy, sadness, anger, etc. etc. It is reassuring that my doctors understand it.
The doctor decided to keep me on the doxycycline and added cephalexin, 750 mg, 4 times a day. She also gave me a number that would have her paged in case I felt exceptionally horrible and couldn't get through to her. She mentioned a PICC line and IV antibiotics but said we should see how I felt on the oral stuff first.
I went home and slept. For several days I felt shitty. I had a pity party. I was needed. It was well deserved. But it was good to get over it by Monday morning. I continued to feel tired. I didn't realize that I was starting to feel better until I began to feel worse at the end of the week. It was my week off. I pushed myself to get ass much school stuff done as possible. I felt accomplished but exhausted. Thursday evening I called infectious disease's assistant because I felt drastically worse again. Saturday evening, just after 7pm (how amazing is that!?!), infectious disease calls. She said to stay on the antibiotics and she would schedule an appointment for a week or so later. Still no surgery date. She said that my blood work was remarkably normal. "Yay?" I think, but still feeling horrible...
Sunday night I went back to Hamilton, staying here 4 weeks straight, which will leave only 3 week in the semester left. Monday was filled with tiredness. My classmates commented how tired I looked. Tuesday was no better. I made it through class, somehow managed to do some cloth shopping (sweat pants for when I have surgery), and then crashed at home. I was really sweaty and a bit feverish on Monday and Tuesday again. I went to bed last night at 9:30pm, and slept until almost 11am. It was not good sleep. I woke up frequently, had night sweats, and generally felt horrible. I want to stress that this is not waking up a bit groggy or hitting snooze once or twice. This is weeks and weeks (over a month now) of sleeping poorly. Waking up constantly, startled out of deep sleep, night sweats... I have tried sleeping less, sleeping more, sleeping with no blankets, sleeping under a pile of blankets. Nothing helps. When I saw infectious disease last, she said that sleep is effected a lot with chronic illness. I am feeling it. Still have bone pain too, which doesn't help. There is no desire to do anything. My brain feels hollow and empty. the industrious student I was last week is not here right now. This afternoon was horrible. It was hard to think straight, eyes didn't want to stay open, temp. sitting at 37.7-37.8. I felt like I was on fire, face burning. Oh, and stomach upset... almost every day now due to the antibiotics. I called the number infectious disease gave me. Within 3 minutes she had been paged and called me back... on a holiday (Canada day). I am impressed. She switched some of my antibiotics around. I am staying on the Cephalexin but am stopping the doxycyclin and switching it with Septra. I was on both of these originally back in 2011. Feels like deja vu. She said if I don't feel better by around Tuesday next week to call her back and we will probably try IV antibiotics, which means getting a PICC line. Let us all hope that these oral antibiotics work. Positive thoughts. I want to avoid the PICC line until absolutely necessary, which is probably surgery. That being said, I feel horrible. If the oral antibiotics don't work, I am willing to try pretty much anything to feel better.
As a big finale, we have a date for surgery: August 26!
So, I can enjoy my birthday (turning 23 on August 23) doing something fun.
The 26th is a Wednesday, so I assume I will be in the hospital over the weekend. Hopefully not, but that is what I suspect. The surgeon said I could be in the hospital between 1-5 days, depending on pain management. Taking the past into account, and how badly the surgeon said this next surgery will hurt, I assume I will be in a few days.
I am going to bed now. It has taken me severla horus to type this all out. I spent most of the day, since getting up, snoozing on the couch, other than heading the pharmacy to get the script for Spetra filled.
Clinical in the morning, which means getting uo at 4:30am. I don't know if I can make it through the day. Just have to think, this is not a sprint, but a marathon to August 26. Slow, and steady. I can do this. Hopefully without the PICC line.
Here is me, several days ago, when I still looked good. I am now at the point I am so tired that smiling is hard. My eyes look squint, and I look like I am grimacing. Good night.
Here is me tonight, doing my best to smile...
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