Tip #79, Picture Perfect; Spicy Medication Trays (Part 2)

     My last post was about using a magnetic spice rack for medication preparation. The goal of such a crazy plan is to give the one recovering an opportunity to be more independent,  and the caregiver an opportunity for more rest and less stress. Well then, here we go!

Magnetic Spice Rack Medication Tray Instructions and Details

Note: The tray should contain everything you need to do meds yourself!

First: When purchasing the magnetic spice rack, look for wide based spice containers, a long and wide base, and a good quality magnet on the bottom of each container. This tray from Canadian Tire has worked very well, and was about $35 (CD). If you can, it's handy to have 2 or 3 of them. Have a look at the Can. Tire one here if you'd like, and look below for how they're transformed.

 

Note: The one downside about this tray is that this spice rack was meant to stand on a counter like a frame, and so the back looks like the back of a frame that would sit on your desk, only it's metal. There were 2 options to fix this that we could think of:

1. Use a grinder to get rid of it. Or,
2. Pad the bottom of the spice rack with thick cardboard and duct tape. If you don't do either of these steps, be aware that the bottom is a pain, and it may catch/tear materials (like sheets, or pants). Both work, but my opinion is that #1 was the best result.

Now the actual details: 

1. Prepare your Med Bag. The idea of the Med Bag (which sits on the tray) vs. the tray itself is that the med bag is like your grocery bag - it has everything you need for that meal/med time. Then, the tray is like your mixing bowl, counter, plate, and cutlery. Of course each bag will be unique to it's owner, but I hope that the following list gives you some idea of what might be right for you. Suggestions are based on 1 bag for 1 medication time (each medication time should have it's own (large ziplock) bag - which is very important in avoiding medication errors! Supplies:

• A labelled (medium sized) resealable bag that contains ONLY the medications/supplements pertaining to that medication dosing time (which may include some meds that are drawn up into syringes, or already crushed pills in a small dixie cup covered with glad press and seal, etc). NOTE: every prepared medication MUST be labelled individually.
• Required number of extra syringes or small plastic medicine cups required for that med time
• Required number of tongue depressors, stir sticks, or plastic spoons necessary for that dose.
• A small towel to put between you and the tray (like a tablecloth).
• A cleaning wipe (in a labelled resealable bag) in case of "spillage"
• A paper-towel for any of the messy work 
• An extra medium sized resealable bag in case you have liquid garbage that you can't get up to get rid of

Picture above: stack of med bags  Each med bag is labelled for it's administration time (Friday January 25th 10am medications, etc.)).

2. Prepare Spice Tray. You're almost there... just a few things to add:

• Travel Pack of Wet Wipes (hand wipes.... one or two in a resealable bag can work too).
• Cups for the spice containers (reminder: you can't put medications into metal containers, so instead they go into paper cups. 16 ounce cups work best for this model. Smaller dixie cups do work, but there is less spillage with the larger cups). Label each cup - 4" x 1"white mailing labels work really well. Marker works well too, but it takes a little longer to write on each instead of using printed labels.
• Cup 1: Water Cup (Keep a thermos of warm water for mixing nearby)
• Cup 2: Equipment Cup (for extra stir sticks/syringes, etc)
• Cup 3: Garbage Cup
• Cup 4: "Extra" Cup (actually labelled extra). Use this as a "working" cup. For instance, as you unpack and open each syringe and put it's wrapper in the Garbage Cup, put the actual syringe in the Extra cup.
• Cup 5: In this case it says Protein (if you look in the picture below), but it is meant for powdered medications/supplements that get mixed with water at the last minute. They are messy to sort out in bed if they are not pre-measured. This also works for crushed tablets and powder-filled capsules. In each case the water cup is used for mixing at the appropriate time.
• Cup 6: You get the gist.

A few fast notes:

• Label, label, label, label. Yep, and label some more. Very important. 
• Stack cups. You can use 1 tray for 1 day, even if there are 7 medication times. Stack 7 garbage cups, 7 water cups, etc.  NOTE: In this case don't have any meds on the tray - keep even powdered meds in the med bags (same type of cup, and glad press and seal (way better than saran), but LABEL and pull out only at that med time).
• Write the meds that you must take on the outside of the med bag for each med time (the big outer med bags are reusable over and over again. Labels stick on well, but come off easily when needed). That way nothing is forgotten.
• Make a master list or take a picture of everything you want to go into the med bag or onto the med tray. Then it's easy for any of your caregivers to grab what you need (as in picture to right).
• You can have a whole day's within immediate reach, spill free.

Happy reaching!

Tip #78, Picture Perfect; Spicy Medication Trays (Part 1)

     What do spice racks and medications (meds) have to do with each other? Nothing really. But, you can make a medication tray using a magnetic spice rack. Why would you want to do that? Well, if the one recovering requires any assistance at all to manage medications under certain circumstances
then the options are limited. A spice tray med tray like this may be right for you if any of the following factors apply:

• You have liquid medications (as do most people who use feeding tubes for example, or for those who struggle with swallowing, and/or recovering from strokes, etc.).
• Some of your medications/nutrition supplements need to be mixed with water just before they are taken (protein for example, or pills that don't come in liquid form and so need to be crushed and then mixed with water)  
• You are on bed rest, or are bed-bound
• You require assistance with meds for any other reason and your caregiver can't be there full time, they might want to draw up/organize the meds for the day or weekend (this would allow them to prep meds once instead of appearing multiple times, everything out and putting everything back several times a day, or allow you to only have someone come once a day...)
• You can't stand or sit for long periods of time (but can be up/sitting long enough to administer the meds as long as you don't have to prepare them as well).

Note though that if it is only pills that you need to contend with then you may or may not want to use the spice tray option. In that case most pharmacies have several options of medication organizers available for single doses per day, multiple doses per day, per hour, or per week. Some pharmacists will also prepare blister packs for you if necessary (A blister pack is very similar to how most of today's chewing gum comes - but for meds you will find the correct combination of meds where each piece of gum would be found).

    Okay, back to the tray. I know some of you right now want to say "Val, even if all of those factors apply, why would I (recovering) want to give someone else one more thing to do (making the tray)" or, "why would I (caregiver(s)) spend an hour putting it all together - it seems like a lot of work to do it all at once?" Good questions.  My personal answers:

1. For the one recovering: Independence, sense of accomplishment, and feeling like less of a burden to others, and let's not forget morale. It gets harder and harder to believe that you are or will get better, or that you were ever capable of doing anything for yourself. Then, meds are set up for you and you accomplish this big job (taking your own meds) and you feel better about yourself. And yes, while it feels like asking a caregiver to do one more thing to put the trays all together, you are going to feel better when that tray is sitting beside you and you don't have to wake up your caregiver who fell asleep watching TV, or get them up when they are pooped and you really really don't want to have to ask them to get up at all. I think it's better for them too, not just for you.
2. For the caregiver: Relief/Respite and Efficiency: As a caregiver you may not be able to be with the one you're caring for each medication time. Or, you may be, but don't want to be taking 30 minutes 7 times a day doing meds. Fair enough. Doing the prep work is so efficient; everything is out and it doesn't take much more time to draw up 2 syringes of Tylenol than it does one since it is all out. Finding the Tylenol labels once instead of 6 times in a day is faster too, etc. If you do prep for a day or a few days, or even for just one medication time of the day it may give you a much needed break. It can also give you peace of mind to know that your loved one has access to the meds they need, when they need them, and in a form that they are capable of taking under any circumstances. Alternately, if your loved one has a nurse or other qualified caregiver, you can request that they make up the trays for you and save yourself even more time and work and use your time to do some self-care or spend time with your loved one doing something fun instead.

     Okay we're almost there. We know why we would want to use the spice rack, when to use it, and now the burning question: why are we using a magnetic spice rack? I looked for something that would do the job online, in medical supply stores, and under every rock. Luckily I have a brilliant sister-in-law B who suggested the spice rack upon hearing her hubby and I having a discussion about what he could weld together (amazingly supportive aren't they? We're so blessed!). Just a few notes now... Well, some
Very Important Notes***

• Remember to, in all cases, consult with your physician and/or pharmacist before taking or pre-pouring/packaging/preparing medications in any way.
• You cannot safely (according to the pharmacist) store medications in metal containers (something about possible leaching into the medications)! We use 16 ounce paper cups to solve this issue.
• One must always label every medication that is drawn up ahead of time (4"x1" white return address labels work really well for this job), and 
• clearly separate each set of medications from other sets/doses of the same meds meant for later in the day. 
• Some medical professionals will not condone this at all, and others will support this method of med preparation. Do not use this at home if any of your medical team members have an issue with this method of preparing medications.

If you think you might like to try the spice-rack med tray, See Tip #79, Picture Perfect; Spicy Medication Trays Part 2.

Happy Spicing, Medication Prepping, Independence-ing! 

Tip #62 Patience Patients; I Am Only One, But...

     Yesterday I wrote a (very long:)) post called Choosing Cheer; Your Energy, Your Choice. I wanted to help free people from feeling so overwhelmed while trying to maintain all they do and have done in life, but now must also do in the face of illness and its effects. I suggested that people work hard at trying to balance the process of recovery with the process of living a full, meaningful, good life. It's a tough job - a huge job - to get that perfect balance!  It reminds me a bit of being a child and sitting on one end of the teeter-totter. Unless both sides were carefully balanced, the prize of having 2 people with their feet dangling in the air at both ends at the same time was not easy to attain. But it sure was great when we were able to get that balance!

     I also know that the energy required to achieve that balance may be hard to find while you are in the recovery process. And, it is a big adjustment to work (aka summon up the energy) within limits that have not been there for our whole lives, but are very real in this phase of life. However, refusing to work within said limits doesn't get anyone very far, and not only hurts you but those you love that are walking this journey with you. Try to be patient in the process - the payoff is worth it. As I was contemplating this again last night, I remembered a poem I read when I was a child that has always stuck with me. I think it describes the ideal balance of life and recovery in a beautiful way.  Happy feet-dangling!

I am only one, 

but still I am one.  

I cannot do everything, 

but I can do something.  

And, because I cannot do everything, 

I will not refuse to do the something that I can do.  

-Edward Everett Hale

Tip #14 Choosing Cheer; Your Energy, Your Choice

     I always say that life is a choice, and I truly believe that it is. We can't always control what will happen to us, but we can choose how we will respond to it. We can. Really. That doesn't mean that we're good at it as soon as we adopt that philosophy, but since there are many many levels of life affected by severe trauma, illness, or injury, we have a LOT of opportunities to practice it! (I know that's a hard one to laugh at, but try... I often think that if I don't laugh, I might cry!). But, neither does it mean that we're happy 24/7. No one can be happy every minute of every hour. But, we do have a choice: do we want to live feeling miserable and making everyone else around us miserable, or do we want to have a great life regardless of what has happened to our bodies? I vote for a great life, and choosing cheer is a vote for a great life.
     Our ability to manage the energy that we are expending each day (aka energy conservation in medical lingo) can dramatically affect our ability to cope well. Have you ever been with a 4 year old who has been up way too late and has trouble coping with anything at all the next day? That usually means more crying, more distress, and more frustration with tasks and with other individuals. Essentially, it's the same with recovery. The more you are able to conserve energy, the better shape you are in (emotionally and physically), and the more you are able to cope.
     Now, I know that is easier said than done. One of the complexities of being so ill is that one day is not going to be the same as the next. There are setbacks, unexpected victories (thank goodness!), and outside realities that affect our plans. Still, it's manageable. I say, DON"T GIVE UP! You CAN do this! How? I interviewed a Clinical Psychologist for a project I was working on a few years ago, and one of the things she told me about was a method of managing energy expenditure while in recovery and beyond. She said she asks people to plot out energy expenditures for the day. In the mean time I have adapted this method several times, and adopted it for my own life too. I will share this concept with you below, but would like to first say that frankly I can no longer be sure how much of the original concept was hers, though a great deal of it is mine (I'm trying to not take credit for an idea that was hers). Still, however you cut it, I now have two methods that have been successful for both myself and others time and time again.
     So, let's regroup here for a minute. Managing energy expenditures = a better ability to cope = a better ability to choose cheer every day. Here are the 2 slightly different methods for managing energy:

1) For those of you who are Type A-ish, or who have long periods where the level of recovery remains the same for extended periods of time:

• Allot yourself 10 units of energy each day. There's no physical work to do here, only mental. Decide to equate the amount of energy you have in a day to 10 separate units.
• You may wish to write a small list of regular activities, and assign them points (washing hair at sink is 1 point, an appointment at an out of town hospital is 10 points, etc. as they pertain to you).
• Plan ahead: Have a nursing visit at home on Monday that is 4 points. Should not plan anything else on Monday because I want to save 3 points for other medical tasks I need to do each day, which leaves me with another 3 points for the day for joy/positive items (like watching a movie with your honey, having a friend over, etc).
• Very very important: 
• Try to balance the items you have to do (anything medical, and other responsibilities), with items you want to do, or that bring you joy. How many joy-points do you need each day to feel contentment and more able to choose cheer? If you don't have 3 to use, what can you get rid of to make room for 3? Remember too, that you can say NO to some things. It would be good to learn how to say no if you haven't already acquired that skill!
• If you don't feel like you can do 10 units on any particular day, then don't. It isn't failure, it's actually success; it means you are listening to your body, and not pushing yourself so hard that you have a setback. The number is a guideline to help you plan appropriately.
• For the extended recovery phases people, don't be afraid to push the limits a bit now and then to make sure that you are not missing an opportunity to be functioning at a higher level. Needless to say, I don't need to give that instruction to the Type A's :)  

2) For those of you who like to live moment to moments (hippie love child way maybe?), and those of you whose recovery is never consistent (every day is different):

• When you get up each morning, think about how you feel. Is this a day with only 3 energy units? With 6? Decide on a value between 1 and 10.
• As much as you can, plan out what you would like to accomplish energy-wise? Again, start with the non-negotiables like doing a particular medical routine, and your personal routine. Then add in your joy items. Sometimes you'll need to decide that since you wash your hair each day, you can go a day without it so that you can have time to play a game with a child, go for a walk, write in a journal, or whatever it is that brings you joy.
• With all of the above in mind, be willing to reshape the day over and over again. As you are choosing your day's items, you might have a, well, lets call it a hiccup, but really it means a fall, too much pain, a panic attack, an allergic reaction... an exacerbation of whatever it is that has has caused you to be this ill in the first place. That's not overly fun, but it's okay, it's manageable. Hopefully, the ability to adjust the number of units as you go is still helpful. For instance, I thought I had 8 units to work with, and after a fall now I only have 2. How do I intentionally want to spend those last 2 units? Regrouping is good.
• Very, very important: When your health changes minute to minute it is hard to not only get joy items done, but to get done medically what you are supposed to in a day to get better. That's hard. But because it's so hard, I think this concept of managing energy (deciding day by day how many units you have), is especially important. Even if it helps you make a conscious decision to do one thing for joy in the day, that one thing can make all the difference in the world. 

The Apostle Paul said (when in chains) "I have learned to be content no matter what the circumstances" (I paraphrased there). I believe it is possible, and it is my goal - whatever the circumstances! I've always been inspired by this, and I hope you are too. I know that managing energy is not as easy to carry out as getting that 4 year old to bed at the right time, but it is doable. You have an opportunity to manage your energy and make the choice for cheer much easier. I hope that if you don't already do that, that you start today. 

Happy choosing and cheering! 

Tip #65 Bibs and Bobs: Germs, You're Outta Here!

     It hasn't been that long since we've addressed germs with respect to visitors (Tip #224 Greet visitors and Stay Healthy), but that post focused mainly on the importance of industrial strength hand-sanitizer and how to go about getting people to use it. In this post, I just want to remind you of some of the small things you can do to stay healthy. Why so much of a focus on all the germ stuff? It is a act that we are all in contact with germs each day, people get sick or they don't and then the world goes on....  BUT, if you are recovering from serious illness or trauma, the last thing you need to be dealing with is getting a bug and either hindering your recovery or barely maintaining it.  With that in mind, here are a few more tips that I believe help people to stay healthy (or healthier at least) in a world full of germs:

• Get your flu shot. Patients and Caregivers alike should be getting a flu shot. There seems to be  a lot of controversy, and some resistance about how well it works for many (and I've even had people tell me it's a governmental conspiracy but we won't go there....). There are great resources all over the web that explain it, so if you are reluctant to get it, maybe read up on it before making a decision to not get it. I also say that if you aren't sure it does anything (prevents anything) so you think why bother? Well, I ask you this: if there was a small chance that you could help yourself or your loved one get better and stay safer, why wouldn't you want to decide to get it? People die from the flu every year; especially compromised people (sick people who can't fight germs as well because they are sick). I encourage you to find your own resources, but here is a link to an Ontario health and long term care website has some good info: http://www.health.gov.on.ca/en/public/programs/publichealth/flu/vaccine.aspx
• Use a new hand towel in the bathroom each day, or even twice a day if there is a lot of traffic in through your house. If you have community nurses coming in, I would also suggest that you keep a roll of paper-towel on your bathroom counter, as they usually prefer to use that when washing for extra cleanliness.
• Purchase a few masks (sometimes you have to get a whole box, but it's usually under $10). Ask a visitor/family member/caregiver who has a cold or virus to wear one of the masks when they are in the room you are, or when preparing food for you. It's handy to bring a few with you when going to medical appointments (I once had a very sick patient transfer attendant with a leaky nose in very tight quarters in the back of the transport unit - I would have loved a mask!). 
• Purchase a box of gloves (medical gloves, but no need for sterile ones). The same caregivers who wear the mask can also wear the gloves when caring for you/touching items you have.
• Use Lysol wipes (or some sort of comparable antibacterial cleaning wipes) for things like:

• Wiping down counter before and after doing all medication preparations
• Wiping down the phones, cell phones, remotes, and computers now and then
• Wiping down door handles, cupboard handles, the squirt part of hand sanitizer pumps, and anything else that people touch a lot.
• Wiping down Feeding pumps, your IV pole, IV pumps, and other medical equipment.
• Don't be afraid to ask people (kindly) to wash their hands if you see them doing things like licking their fingers to flip through pages, or blowing their nose, or playing with their lip rings, etc. Be pleasant, but unapologetic. You need to stay healthy.
• Keep antibacterial hand wipes beside the bed. I know that these days some say that you shouldn't use antibacterial soaps, wipes. gels, etc. all of the time, and I do agree, because we create all sorts of superbugs when we follow that pattern. That said, if you're sick, use them and ask others to use them. If you can't get out of bed very much, then you want them to be antibacterial after you've touched your wound/changed a dressing/touched something, spilled your medications on yourself...
• Use thermometer covers. They are thin plastic covers that go on the end of a thermometer, so that you are protecting the thermometer from germs (nurses still wipe it down with alcohol wipes sometimes too, but it is still better than not doing so).
• A steamer is fairly expensive, but seem to be all the rage right now. They are used for sanitizing handles, doors, floors, counters and more, and are great because you don't have to use chemicals (which also have the added bonus of having scents that are often not helpful). 
• Regarding medications:
• If you are trying to count how many pills you have left, or are trying to get just one pill out, try not to dump the pills out. The more you handle them, the more potential for germs
• If you are using liquid medications and it is easier to pour some out into a container first, make sure that container is clean, not used with any other med, and ideally, don't dump the remnants back in the bottle. If you use a dropper for the meds, don't let it touch your mouth.
• If you are using ointment on a wound/cut, etc., don't put it on the site directly. Put some ointment on a q-tip, gauze, even paper-towel, and apply it from there. That way you don't contaminate your tube of ointment.
• When you come home from tests at a hospital/medical office... wash your hands and change your clothes before crawling into bed. Let the washing machine fight your germs while you rest:)

     I'm fairly anal about making sure that the house is as germ-free as possible, and I do all of the above. I am sure that there are many. many, many more ways to protect from germs, but I leave you with this - make sure that you are not living in a state of fear and being obsessive about ridding germs. There will always be germs to fight, and you can't win every battle with them. I would suggest trying to strike a balance between doing a reasonable amount of germ-free sentry duty that implements the types of suggestions above, while enjoying the people and the things around you - without constant fear of getting even more ill.

Happy germ-fighting!

Tip #82 Form Frenzy; The Receipt Binder

       There are many circumstances in which people are able to submit medical receipts, and be reimbursed for some, most, or all of the expenses. Whether it's an insurance company you are submitting to, or simply keeping them for tax write offs (or anything in between), it makes sense to keep the receipts as orderly as possible to make sure you're not missing out on getting reimbursed.
     However, when you're very ill and/or your family/caregivers have extra duties on their plates each day, it is easy to say "we'll deal with that later/when you're better/when we have time/when we're not so tired..." The problem is that even with the best intentions, that time never comes all that often, and then it's a big project. Enter the receipt binder...
    The solution is so easy it seems silly to consider it, but it works.

1. Buy a binder and dedicate it only to keeping track of receipts, and buy page protectors (clear plastic sleeves that are hole-punched, and are open at the top). 
2. Label 32 page protectors (one each from #1 to #31 plus a protector labelled "next month")
3. Use a label or tape a piece of paper to the cover of the binder to note the month, and keep the binder in an easy to access location.
4. Let everyone (family, caregivers) know that anything delivered, and or any receipt from something caregivers have picked up for you MUST (pretty please) automatically go into the binder (If they bought it on the 12th, it goes into page protector #12). 
5. Use the extra "next month" page protector to temporarily keep receipts for the first few days of the next month (in case you are not able to do expenses submissions exactly on the last day of the month).
6. If you want to be even more organized, I would suggest that you 
1. Keep labels and a marker (for changing the front cover)  
2. Keep a checklist of what you've submitted and/or how much you've submitted for, and enter the date on which you mailed them.

I think that is it. If you only need to submit annually, then downsizing to 12 protectors (one for each month) is still helpful. 

Happy receipting! 

  

Tip #402 Patience Patients; It's not about the ice cream

     It's not about the ice cream? Okay, so I know it's an odd thing to say, but "it's not about the ice cream" is the phrase one of my very wise friends taught me, and to me, it describes an outburst of distress at something totally ridiculous. I'm calling it ridiculous because the reason for upset is clearly not something your loved one would typically get upset about,  and certainly not something that would cause them to have a huge meltdown (like having no ice cream in the house). Having said that, I would really really encourage anyone witnessing such an event NOT to point out to the one in distress that they are being ridiculous. No really, that is not a good idea, don't attempt this at home! In truth, it's not ridiculous at all, it can just seem ridiculous because of the topic, and because said topic seems to come out of nowhere.
  
     While it is possible that the caregiver will have this type of response, it is (in my opinion) the patient who may demonstrate this particular behaviour most commonly.  I have been on both ends of this emotion, and neither one of them is fun, but I hope that whatever end you experience, that you can
a) look back and laugh at yourself, and
b) should it happen again, recognize it for what it is, and know that you're not crazy (well, at least, not losing your mind entirely). It's normal. And as to that, remember too that here are more people just like you. You're not alone, and you're experiencing something common that people in these kinds of situations most definitely experience too. Still, try to not make them regular events...

     I know the ice cream part of this probably doesn't make all that much sense yet, so I'll give you an example. My "ice cream" was "pens" the first time it happened in this bout of illness. Yep, pens. Who took my pens? I can't get out of bed, and people keep walking away with my pens. When the phone rings, or the doctor comes, or I remember an item for a shopping list, I write it down. But writing it down is hard when you have no pens, and I seemed to find myself without pens quite a bit. Now, truth be told, I call the bed covers the "magic covers" because they have a persistent way of making things that I want and have been using disappear, so I was as big a culprit as everyone else! Still, if you're being irrational enough to feel like you're losing your mind over not having pens, then you are irrational enough to not take any responsibility for it. Things like the covers become entities in and of themselves at that point, and are a safe thing to be frustrated with!

     So, in the throws of my meltdown about the pens, one of my wonderful caregivers walked straight up to me and said "you need a hug right now don't you?" I wasn't so sure, but then when she said "It won't be like this forever, " I realized that it wasn't about the pens. Generally speaking, it's not usually about the pens, the ice cream, or anything trivial. Are you ready for this? It's a big realization... it's not about something trivial, it's about being frustrated and/or impatient about the situation, and the length of time it is taking to resolve that situation. After all,  no one wants to be sick, be debilitated permanently or even temporarily. No one wants to burden family, friends, or any other kind of caregiver. No one wants to have to ask for help to do anything you feel like you should be able to do yourself, but can't. No one wants to feel helpless. But more than that, I think the biggest thing for patients is that no one, no matter what, NO ONE wants to feel so out of control, And, severe illness, well, one of it's greatest achievements is it's ability to remove any sense of an individual having any control of his/her life.
  
     With respect to caregivers, I think that the loss of control is also a factor that may contribute to such a meltdown, and fatigue is a likely culprit too. I also think that in such an instance it would be easy to feel unappreciated (I'm bringing you breakfast, lunch, supper, helping you eat, etc., and you are mad that I walk away with a pen?). I will try to address more caregiver feelings in situations like this in another post, but want to focus on giving patients patience with themselves, others around them, and entities like bed covers that seems to join in the fray:).

Wow, this is a long post - thanks to those of you who have gotten this far... we're almost there!
  
So, what do I recommend? If you are the person having the meltdown:

1. Try to recognize that it's not about the pens, and realize that it's okay to be frustrated that you feel the way you do.
2. Recognizing the meltdown for what it is, try to laugh at yourself, and then allow yourself a constructive way of getting it out such as:

• journaling, 
• talking to someone qualified to help, 
• spending time doing something for joy, 
• spending time with loved ones.... 
• whatever it is that will bring you comfort.  
• In the absence of being able to do anything that makes you feel better in that moment,  try to have enough patience to NOT take it out on your caregiver!

If you are a person with the melt-down-er:

1. Don't for any reason tell the person they are being ridiculous. They're not. What they are experiencing is normal. Frustrating, but normal.
2. Try to comfort said individual that it won't be this way forever (and it won't... even if it's a permanent condition, your coping skills will get better (providing you want them to), and so no, it won't be like this forever). 
3. Don't take it personally. If they are upset, it doesn't necessarily have anything to do with you.
4. For heaven's sake, buy a jumbo box of pens, and keep the freezer stocked with ice cream! :P

Happy shopping!

Tip #51 Picture Perfect; The "Schedule" Whiteboard

     Okay, so I'm not going to bore you and talk about the last 2 posts about various whiteboard uses to keep track of important medical information such "timed meds" and "last changed" items. But I will direct you to posts #49 and #50 should you wish to know more useful tracking tools when recovering at home.
     The third whiteboard I suggest you may find helpful is one with daily and weekly scheduled items. In both cases (daily and weekly), there is room for flexibility (if 9:00 am tasks are not started till 10:00 then everything gets bumped an hour as well, so you can stay on track, and stay safe.  And, this way your caregivers/family members/patients will all be on the same page for what is expected to happen and when, and takes a lot of the pressure off any one individual to remember everything that needs to get done.
     I suggest getting a set of whiteboard markers and an eraser from a business supply store. They come in packs of 4 for about $5 in most places. I especially like making the boards colourful as a) it's easier to see/read, especially for those with memory or vision issues, and b) it's just prettier and feels less like a hospital room and more attractive despite the fact that it is a whiteboard in your living room/bedroom, etc!

Examples under Daily Schedule:

• 9:00am Medications x, y, and z
• 9:30am 1 tin Boost meal/nutrition supplement
• 11:30am Medications x, a, and b
• 12:30pm Shake with protein
• 3:15 Medications c.d. and y
• 4:50 Eye drops, physio exercises, Medication b
• 5:30 Half a can of Boost meal/nutrition supplement
• etc.

Examples of Weekly Schedule (items that occur each week and/or only applicable to the current week)

• Monday: Change bedsheets, count medications and make pharmacy order
• Tuesday: Make 30 Popsicles (some people can't have solid foods and get sick of broth, jello, and apple juice, etc.
• Wednesday: Caregiver Joe cannot make it - Bob coming instead. Weigh in, and record weight on chart
• etc.

(PS I cheated a little... this whiteboard was SO big that I incorporated timed meds on it, but you get the gist:) Happy Scheduling!

Tip #50 Picture Perfect; the "timed medications" whiteboard

     My last tip (#49) was about the "last changed" whiteboards. The kind of information tracked on those boards are typically items that don't happen every day or multiple times in a day. For instance (and prepare yourself for the example if you are faint at heart), if your pain medications cause you to be constipated, it helps you track when the last time you were able to have a bowel movement, and if you have blood taken each month, it helps you track when you did it last, etc.

     The whiteboards in this discussion are "timed medications." You may only need to take one pill/shot/drink of medicine once a day everyday. If so, this whiteboard is not going to be all that helpful. But, if you are taking 2 or more medications each day, and especially if you are taking them multiple times in the day, the timed meds board is quite helpful. I suggest hanging it on a wall in an area you can see from your bed/couch/comfortable area during recovery. Suggested items for the whiteboard:

• Any medication that happens more than once a day and shouldn't be taken too close to the last dose. For instance:
• Pain meds that you can only take every 4 hours (and can be dangerous if the doses are less than 4 hours apart).
• Medications that can't be taken within a specific period of time of another drug/food. For instance:
• You can't have dairy one hour before certain antibiotics, and for 2 hours after
• You can't have certain laxatives until 2 hours after other medications as they will render the medications nearly useless
• You simply have a lot of medications per day. So it becomes a checklist of getting all of your meds done.

Why don't I suggest that you just write these things on a piece of paper? Because:

• Paper gets thrown out or misplaces and 
• You don't always think to go looking for the paper in a day, but the whiteboard is in your face, so hard to forget/ignore
• It enables family members/caregivers to see where you are at, and to remind you if you have missed a  dose/ have an upcoming dose.

Have a look (and PS, if you use permanent markers for the med names, and dry erase for the times, it's easier to wipe off the med times and keep things clean. If you have a change to make with the permanent markers then scribble completely over it with the dry erase, and all of the marker will come up!:

Well, happy safeguarding!

Tip #49 Picture Perfect; The "Last Changed" Whiteboard

     When was your last B12 shot? Your last IV line change? How about your last bowel movement? Pardon me for getting personal! But, know that if you are recovering from severe illness at home, you will likely have nurses, physio-therapists, etc., and if you do, they will ask you these questions and more (of course adjusting them to your particular situation). That's where the whiteboard fits in. I know it sounds crazy to have to write down the last time you had a bowel movement... you'd think that that is something you'd remember, but it is an important question many will ask you, and the more accurate are, the better shape you will be in. And, you can write it in a way that no one else knows (in this example sup is short for suppository, and thus makes sense without having family or friends having any idea what you're speaking about). 

     One very big tip is that you should make the whiteboard as EITHER "Date item was changed/administered/altered" OR "Date item is TO BE changed/administered.altered"It's very confusing otherwise. Also note that there are other options for monitoring timed medications as part of a different set of whiteboards (see Tip #50).  If you want some suggestions/examples  of the types of items I believe are most helpful to have recorded for yourself and your medical team, look at the list below this  picture. Thanks!

Suggested items: 

• Any medication that you don't take every day (here fentanyl is changed every 2 and a half days).
• Any medication that you only use occasionally, but have to track for the nurses/ team members (Here B12 is given every 2 weeks)
• Last Bowel Movement (Here is listed as sup, and the orange refers to a feeding tube adaptor which gets changed every 3 days
• The date (very important!)
• Notes for the day. Examples:
• Don't forget to call the pharmacy and order specific meds
• Ordered refills on such and such a day, will be delivered on...
• Don't forget to change your medication patch
• Didn't have my 10am med dose until 12pm, so can't have it again until 4pm, instead of 2pm
• Goals for today (walk around table, sit up 20 minutes, physio x3, etc)
• Your last blood test (eg. if you have blood taken every few weeks or months, record the last time you did it as a reminder for the next time it needs to happen) 
• Caregiver schedule
• Any other items that would compromise your safety should you not have them done on time, or that would compromise your safety if they occur too close together.

Happy Writing!

Tip #48 Frugal Fixes; You rang?

     You weren't planning on you (or one of your loved ones) having a stroke, breaking a leg, being hit by a car, or whatever the reason you are now recovering at home. You're home, and that's grand, but you feel like a burden and the person taking care of you keeps coming into your room (or the living room, wherever it is you are taking up residence) to make sure you're okay, and you feel really bad that they have to do that. Or, you're the caregiver and you need to continue with the functioning of your home while you are caring for someone who can't move around your home so easily, and you can't be with them every moment of every day just to make sure they have what they need to stay safe at the very least. Or you are a spouse who desperately needs a full night's sleep upstairs in the good bed (rather than downstairs where your loved one is as they can't get upstairs safely) but you won't because you're afraid you won't hear him/her when they call out for you, or that you'll sleep through it.
     Unless you happen to have the luxury of living in a home with an intercom system that is easy for both of you to operate, you're going to need to figure something out so that everyone can maintain their sanity. Doorbells are the perfect solution. Yep, doorbells. If you have a wireless doorbell system already, for under $10 you can get another push button (what you see when you're standing at a door and want to ring the bell) to work with it. Just make sure that the brand is compatible with the brand that you already have.  If you have a wired in doorbell system (common in older homes), then for about $30 you can buy a whole wireless doorbell system, which includes one or two push buttons, and the section that actually makes the sounds. The idea is that the caregiver can carry the chimer with them (wow, "chimer," that surely must be the technical term? LOL).
     I can't take credit for thinking of the doorbell system, but a family member (thanks!) did figure it out, and it works like a charm. It gives both parties peace of mind as the "pusher" doesn't feel like so much trouble (to have to be checked in on constantly), and the "pushee" is confident that a) that they will hear the chime when assistance is needed, and b) that if they don't hear the chime, the patient is still safe! It's a win - win. Note, you will need to buy batteries for it.
Happy ringing!

Tip #188 Frightening Fear; Sharing the Journey

     Have you ever been camping (in a tent, or a rustic cabin), and had to go to the bathroom in the middle of the night? Usually the trip is just fine, but on other days, for whatever reason, the trip seems like a really scary thing. There are no lights after all, and, where we camp at least, there are sometimes roving bears looking for food, wolves, the odd porcupine, and, of course, various creatures from the depths of our imaginations. And what do you do on those days that getting to the bathroom is nervewracking? One solution is to ask your travel companion(s) to go with you. You turn on the flashlight, link arms, and go off into the night.

     My theory on why that makes a difference is not only that there is strength in numbers, or that two heads are better than one, though I am sure those reasons are valid too. No, the biggest reason to me is that it is a shared experience. No amount of describing is ever going to prepare someone who wasn't there for what was going on, how you felt in that moment, or feel the goosebumps you felt when you heard the wolves howl. And, others may even tease you (rightly so in this case!). 

     On a more serious note, the same is true of dealing with looking death in the face, or even a long recovery straight on. If they're not with you, it is hard to feel like people get it, no matter how hard they may try, be they patient, caregiver, or loved one. So, when you find someone who has traveled a similar journey, there's a sense of not being so alone, not having to explain, and a closeness that is invaluable. No one wants someone else to go through fear, but if you have to, it helps when you can know another who has walked that road. Today I found a blog "Go Val Go" and it made me feel that way. I saw that she had a similar scar from a similar procedure. I saw her friends supporting her, and I saw her fighting. The fighting is my favourite part. And even though I don't know her, she has comforted me. She wrote a poem of "Random Thoughts" that was significant to me, and talks about the fight.  It spoke volumes to me, and I hope it does to you too. Here's the link: http://govaleriego.blogspot.com/2010/10/random-thoughts.html   Have a great day!

Tip #224 Bibs and Bobs: Greet visitors and stay healthy

     Sharing is great. Highly recommend it. Well, except during flu season! Okay, so still share, just not the germs.  Neither you nor your caregivers needs to get a virus ever, but especially during the recovery process. But, it is hard to ask people (or remember to ask people) to wash/sanitize their hands upon entering. So, we made it easier for our guests/practitioners... we put up signs.
     Now, I know signs can seem less than beautiful in a home (as opposed to an institution), but it's worth it. We have a "please sanitize your hands before entering- thank you" sign on the front door, and a second one on the table in the kitchen (which you have to go through to get to the bed in the living room). The sign in the kitchen is in a clear plastic frame so that it stands up, and stands out. The hand sanitizer is beside the sign on the table too, so no one forgets to use it on their way through. It works well, and people now do it without even thinking about it. What is fantastic too is that  delivery people are doing the same, even though they're not aware of what illness is in this house. Hooray!
     Aside from protecting germs from others from coming into your home, hand sanitizer is also good for  use at the bedside.  Anytime you touch your wound (for example) you should hand sanitize. The same is to be said of an infection that you may have etc. it's good of you to protect others from your germs if relevantt.  I keep wet ones (hand wipes) at the bedside and use them before eating etc. to keep my hands from falling off out of dryness but use the hand sanitizer as well when necessary.
      Just one last note on the use of antibacterial hand sanitizer: they are not all created equal. The ones you usually pick up in the grocery store are not always the hospital grade sanitizers. In normal life this isn't all that important, but if your immune is compromised because of illness, or stress from caregiving, then the type/use of sanitizer is relevant.

Thanks for taking the time to read this. Happy sanitizing!

Tip #144 Weighted Wonders: I love... I phone... my iPhone

I did call this category Weighted Wonders for a good reason - and in this case it is the price. iPhone aren't cheap by any means, but I have to say that I would not give up my iPhone for all the tea in China (and I really really do like tea!). Note especially that this decree is coming from a girl who hadn't ever sent or received a text, nor owned a cell phone less than 5 years out of it's prime, nor ever believed that she'd want to have a smart phone, ever. But, I am not only a believer in smart phones, but truly a believer that an iPhone can revolutionize your recovery. Who knew!

Here are a few features (well, a lot really, but only a few features compared to the number of features it has) that I love, and think you might love too! Bare in mind too, that I don't expect anyone to read the whole list, so I've highlighted the point of each section. Have fun!

• It has a stopwatch function for checking my pulse, or timing the rate at which some medications are supposed to be administered
• It has a timer that is easy and reliable to use - and it can have a different ring tone than some of the other alarms on the phone
• It has an address book that I keep all my emergency, medical team, and family numbers in. When you're in bed 24-7 you can't keep getting up to find a number very much or at all. When you are feeling rotten and need to call an emergency number, it's handy to find the number and let the phone dial it for you (or do voice dial). And, when you are packing to go to the hospital, you have only to bring your phone so that you have your books, your addresses, your calendar, you're appointments, your timers etc all in one compact place. Yee haw!
• It has ical, a calendar you can use to set alarms for different days, and different months etc., BUT the reason it stands out so much to me is that you can set it up (easily) to alert you at the time desired time as well as at a desired interval length afterwards -  so, if you're supposed to take a medication and are on the phone when your alarm goes off, it's okay. It will remind you again at a designated second alert time
• It has a calculator that is easy and reliable to use. I use it for calculating my fluid totals for the day, or how many syringes and other supplies I need to order in a 13 day period (for some reason I never managed to memorize my thirteen time tables:) ).
• It's easy to text: I really never believed I would text anyone... but I confess that I love it. When you are feeling miserably tired, you don't feel like calling people, or taking the time to call up email to be able to send a big email. But, a text, well that's easy. No one expects you to send a lot via text, and it is an easy way to confirm shifts for attendant care, or send your hubby a note to say hello, or keep in touch with family members, or for asking someone to pick a little something up for you.... It can be exhausting keeping up with everyone when you're so ill, but this texting makes it so much easier.... And, when I am back in hospital emergency, we can text family to update them without having to leave the unit to use the phone. That's awesome!
• If texting really still isn't your friend, then you can send email via your iPhone. What I especially love is that when I'm on the iPhone I can still see the emails I've already downloaded to my computer and vice versa. It's not on one or the other.
• Audio books are very important to me. I don't sleep much and I don't want to keep my hubby up, so I listen to books at night. I love that there are functions for rewinding by 30 seconds, or manually rewinding to where you want to be, but it also has the ability to speed up or slow down the speed of the speaker.
• I have a free flashlight app that I use on the iPhone, so that I no longer need to turn on the lights at night to get to the bathroom, and I can do injections at night in bed without waking up my husband, or trying to fiddle with lights. That flashlight app is amazing.
• There's an hours tracker app I love that helps track the hours people are here doing attendant care, so I can pay them accordingly
• itunes is easy to use, and I love all the items you can share between the iPhone and the computer so easily. They sync well, and save time, and I can easily listen to whatever I want on it.
• The camera function is amazing! One of my meds affects my eyes, and things are blurry for a while. In a pinch when no one was available to assist, I drew up my meds, took a picture of the syringe, and used the finger pattern for zooming into the picture so that it was nice and big and I could tell exactly how much medication was in that syringe. When purple chunks were coming out of my feeding tube and I didn't know what they were (other than really not good!), I took a picture and gave it to the Doctor. Antibiotics were immediately prescribed.
• The other handy-dandy thing about the video function/camera function is that it is great when my little kidlet friends come over. Sophie is 16 months old, and I use the button that makes the camera look at the person holding the phone rather than what the phone is aimed at. Sophie loves her "moving mirror" and walks all over with it. And, I have to say that easily having the phone there for those reasons gives me an added benefit too - I can look at those photos/videos in the days/weeks/months to come, and it brings me great joy (and it's easy to delete the as many of the dud pictures too, and to sync them with my computer so they're easily available everywhere I am able to be:))
• Of course the clock function is great too. Not all hospital rooms, or recovery rooms at home have a clock that is easy to see, or that is lit to see in the dark. 
• The ability to set different sounds for different alarms is very useful. I know by the sound if it is time to take a medication, or a reminder that the physiotherapist will be here in a few minutes (and I don't have to stop what I am doing to look).
• You can watch TV shows and/or movies on it too. Though, they're pretty little.
• I can't wait to try this function: the Face-time function. I can't travel. I live in a hospital bed in my living room. And, not everyone can travel to me either. So, having the ability to do face time (i.e. skype kind of talking where you are seeing the person you are speaking with and vice versa). 
• Living in the country as I do, we have had a hard time getting reliable Internet usage. When the Internet is not working, I still have the Internet via the iPhone because it uses a different kind of signal - it accesses the cell towers or something like that (I don't pretend to be a technical ninja), and presto, I have Internet whenever I need it! 
• And, when you are on the Internet, it is really really easy to see where you are because a) you can enlarge the page you're on simply by spreading two fingers apart. Viewing is also made easier everywhere else because a magnifying glass will appear as you need it.
• The weather function it comes with is handy. There is a simple app (that was on the iPhone when I got it I believe) that tells me what it is actually like outside in my own small community. 
• The Notes function is awesome too. When you need to write something down, but don't feel so good and don't want to/can't get up, it's great to use the notes function. Jot down what you need, and make as many notes as you want.
• The voice memo function is amazing too. If you have trouble typing, or are in a hurry, use your voice memo function, and tell the phone what it is you want to remember. For that matter, there is also a google app that works with it, where you can tell the phone what it is that you want to search and it does it for you.
• The settings are great too. You can make the screen less or more bright (I make it darker at night so it doesn't light up the room and wake up my hubby, but it is also handy if you have troubles looking at bright things. You can also change the background pictures to get a good contrast (I find it easier to see the icons when the background is a deep blue), and more...

I think it would be easy for me to go on and on and on about the wonders of the iPhone. It has changed so much for me. It has revolutionized my recovery in so many ways, but the 3 most important ways are:

1. It's helped me get more consistent in timing of foods and medications (meds). Bodies like that in recovery (and otherwise too I think!). And as i am more consistent I have more energy. 
2. Medications are on time, the things that were unsafe to forget in a day, are now never forgotten because alarms prompt us to remember specific items (e.g. we kept forgetting to unclamp one of my IV meds. this is bad, cause it means you don't get the meds at all until you remember to unclamp it. That can get dangerous). Now, we set one alarm and ask it to be repeated on a daily basis, and it then automatically prompts me each day to take that clamp off. It's great.
3. I'm communicating more (and more efficiently) with loved ones, professionals, and myself even (with all the notes I leave to myself) and made me feel more connected to the outside world as a result.

So, there you have it. Other "smart phones" may be very valuable, but I would never trade in my iPhone (and no, they are not paying me to say so). It's easy to use, and easy to use, and I use it every day. Price: I pay about $60 per month (expensive I know), but it is worth it to me. At the end of the 3 year contract I will own it. You can buy it outright for up to $700 or so I've seen (or an older version for less)...

It truly is a decision that needs to be carefully considered because of it's price, but to me it is a weighted wonder!

Happy recovery!

Tip #324 Keeping a Journal Part D: A semblance of Order

Hello again,

Okay, so my longwinded discussions about keeping a journal are finally over (almost :)  This is just one more entry to address what may be helpful when you are setting up your own journal for medical record keeping (and, as I said before, for a general sense of sanity), So here goes - after 8 journals in this bout of illness, this is what I find helpful to include:


The Journal itself:
     I suggest using a spiral journal with perforated removable pages (I get mine at staples for about $10),   and separate the sections that you'd like to have with sticky page tabs. Spiral journals are easier to use       if you are writing while in bed, and thick enough that if you are working with only one hand, it won't
be hard to hold open.
     How many pages per category? I would use 5 pages or so for categories that I don't use often, and 10 pages for each of the other categories.

Categories 

1. I find it helpful to have a category for each discipline (for each category of team members). So, if you have an occupational therapist, a dietician, family doctor, surgeon, pharmacist community nurse, physiotherapist, specialist, case manager or other. Again, one section (of 5-10 pages for each). I jot down all the outcomes so that I can report on that info to the other members of the team.
2. The last 10 pages are my address book. So, all the medical phone numbers and faxes go here, along with the family members you might need to contact in a hurry. You'll appreciate not having to dig for numbers. When you are done that journal, photocopy those pages, and tape them into the new journal (or put them in your smart phone etc. if you are technically inclined).
3. I suggest a small section for shopping. When you can't get out on your own much and are dependant on others getting you the things you need when they are available rather than when you are available, it's easy to forget what you need. And, it is also easy to remember what you are missing once your helper returns without the items you need! :)
4. A section for research is great. Here I put questions I have that I can solve by looking things up, and questions that I would like to ask various team members.  I put the answers here too, as usually the research affects more than just one discipline, and thus is easier to find here rather than in the discipline sections.
5. The personal section is very important too. It's easy to forget messages, appointment times, grocery reminders, etc. unless they are written down somewhere. Scrap pieces of paper are easy to lose in the covers of the bed you are in (providing you could find a piece of scrap paper to write it on in the first place!), This is also a good place to write your goals. Goals for recovery, for relationship, and for personal achievement are still important and worth working towards. 
6. The last section I recommend is for lemons and cherries. What? Yep, that's what I said.  A lemon is the worst thing that happened to you in the day, and a cherry is the best. You don't have to be extravagant in your descriptions of such events, however, I think it is important to write these periodically, and to take the time later to read them. They are a good way of getting things out during stressful periods of life (like illness/caregiving), and a good way of celebrating what you are actually accomplishing as well. Even if only sitting up for 10 minutes is accomplished, take that victory. Write it down. When you come back to it a month or a year later, you will be so proud of what you managed to do back then, but more importantly, you will see how far you've come. Including the cherry part of this exercise can also allow you, when looking back, to appreciate that no matter how hard things were - there was always some good happening in your life too. I think that happiness is a choice, and doing exercises like lemons and cherries helps me to be able to choose that happiness.

Well, I think that's it for now. Happy journaling!

Tip #322 Keeping a Journal Part C: Getting a Complete Diagnosis

By now, you may have already reads parts A and B regarding keeping a journal to help keep all the info you gather together, and how journaling can help your sanity:)

This part of the journaling discussion comes from a statement an in-patient dietitian once made to me: 

Doctors can't argue with Data.

It's a simple statement; doesn't sound overly exciting I know. But lets say it again, and with a small addendum:

Doctors (and other medical professionals too for that matter) can't argue with data. 

So what's the big deal? Why is that a significant statement? 

1) Some people are still of the mind that Doctor's are God's. They're not. 

     Doctor's, much like other medical professionals, are people and, as such, are 

     not infallible. So, if you think that the issue you present is not being taken as 

     seriously as you feel it is, or that the solution is still not addressing what you 

     feel is wrong, then collect data. Write down the symptoms each time you 

     have them, and any events that might have triggered such symptoms. Track  
     how long the symptoms lasted, and what, if anything, helped them go away, 
     or made them last. Doing this is invaluable for the physician, and lends itself 
     to a faster and more complete diagnosis.

2) If you're looking for action on an issue that is ongoing, diagnosed, but in your opinion not getting the right treatment, then collecting data is again, helpful for practitioners. In this case, the problem may be a communication one; you and the practitioner are speaking two different dialects of the same language. In your life, a lot may mean 3. For a physician, a lot may mean 21. You're both talking about the same item, in the same language, accepting the diagnosis BUT, if the dialect is different, the issues may not be properly addressed. A few examples:

• a)     Telling the physician that you are drinking a lot each day and still feeling dehydrated probably won't get you too far. Documenting exactly how much water you've had each and every day in the last two weeks however, will allow him/her to see the full picture and act on it if necessary. Or,
• b)     Telling a surgeon that you've had a lot of gall bladder attacks in the last year and showing said surgeon the 19 dates on which you've had them may yield 2 very different results. "A lot" is relative. To some it might mean 3. If that's the case, the surgeon may decide it's not worth operating. At 19, you may have your surgery that week. The clearer you can be the better.
• c)         If you are referred to a dietitian for a weight issue (weighing too much in this case), they will likely require you to bring a form that documents what you've eaten in the last 3-7 days. Tracking the food/calories will help them see what your eating habits are to help diagnose the problem before even thinking about how to change your diet. Thus, if you say you are gaining weight even though you are not getting enough calories/fat for that to happen, the form will speak volumes for you. They'll tell the dietician that you are in error about how many calories are in a specific food and they will educate you, or, conversely, tell the dietician that you shouldn't be gaining weight with your eating habits, and thus an investigation into why you are gaining weight is in order.

There are many situations in which collecting such data is immensely helpful to your health. Track anything that you aren't sure about, and do it regularly for accurate information. The only thing I would caution is that this type of journaling should not be all-consuming. No one has time or energy to document everything one does in a day, nor should they make the time to. Take the time you need to have a good quality of life whilst in this situation, but don't allow yourself to tailspin into focusing on these odd, hard, or mysterious symptoms. For that matter, always balance fighting for health with fighting for a great quality of life in all aspects of life. 

Well, that's all I (finally) have to say about journaling. If you'll indulge me, there is only one more post in this string of keeping a journal: how to set it up. Thanks! Have a great day!

Tip #321, Keeping a Journal Part B: Recording Recovery Milestones

     In part A of this topic I wrote about the benefits of keeping a journal with respect to communicating with various medical team members (see post #320 on January 9th, 2011). Now, I'd like to suggest you keep a journal for another reason: to keep your sanity. Yep, that's what I said... to keep your sanity. How and Why?

1)  You can prove to yourself (and/or your caregiver) that you're getting better. That's important.
     Depending on how ill you are, you don't always have the luxury of setting goals that are realistic, because too many things beyond your control can happen. Yes, out of control things happen to healthy people too, but the chances of out of control interference for physically based goals are higher when you're ill.
     So, when you do meet those goals, celebrate! Write it down! And, put a date with it.  I can look back in my journal and know that it took me 7 months to be able to meet my goal of sitting up independently for 20 minutes. That is a huge milestone for me! At month 6, it felt like it was never going to happen, but I could look back and know that I had already been working on it for 5 months, so there was no going back. And, when I feel like I'm not getting better at all, I look back through the journals and know that although it took 7 months to sit up that way, it took only 3 months to go from that to walking to the kitchen and around the table. Sounds like very little to some, but to me that is the achievement of another milestone.
 If I didn't record those kinds of things, it would be very tough to believe that I am getting better.
As important, it would be very tough for my family and friends to feel the same. But I can remind them of how far we've come... and when they say no, it's been longer than that, you can say, actually yes it did; see, look.
One way or the other, the proof is in the journal though! Savour the victories, and believe the rest will come. Never give up... you need to fight for what you want, celebrate what you achieve, and remind yourself that you can do it - that you've already done much.
  
2) Almost as an aside, since reason 1 is reason enough in my books, there are a few more reasons in the sanity realm that warrant keeping a journal:

• All of your medical info is in one spot. When a medical team member calls for clarification of an issue and only has a second to talk, you don't have to scramble to find the info. 
• A very efficient housekeeper, spouse, or family member will have a harder time putting all your papers in spots you can't find (this has happened to me many many many times. Trust me, you want it all in one specific spot). 
• As long as you bring the journal with you, you always have what you need at any appointment. If you write the results of the appointment in the journal, you now have all you need for your next appointment with a medical team member. 

See part C for more about keeping a journal/what info to keep. Thanks!

Tip #320, Keeping a Journal Part A: Communicating New Developments

     Write it down. All of it. Always. That's one of the biggest things I can tell you, no matter what stage of recovery (or caregiving) you are in. Write it all down. It's too hard to keep track of all you need to know without writing it down. And, even better, if possible write it all down with some semblance of order so it's actually helpful to you. You won't regret it, I promise you that. Why do you need to keep a journal? Well, that's a bit of a loaded question, so I'll divide my answer into a few parts:

Part A: Communicating Progress and New Developments

Part B: Recording Recovery Milestones 

Part C: Getting a Complete Diagnosis

Part D: A Call for Order

Communicating Progress and New Developments

If you're recovering at home after a hospital stay you may still have a team of professionals assisting in your care, even if the team is composed of different people than when you were in the hospital. If you want to maximize your recovery (or that of a loved one):

1) It's important to inform team members about new developments/recommendations from other team 

     members. For instance:

• The physiotherapist will be interested to know that the occupational therapist has ordered a shower stool and railing. The physiotherapist can help get you prepared to actually use those items while you are waiting for them to arrive, and help smooth your transition to using them once they do arrive.
• The family doctor will want to know that the physiotherapist thinks you need to see an orthopaedic surgeon, neurologist, or other specialist, since it's the doctor that makes the referral. Then, the physiotherapist will want to know if the family doctor agreed and completed that task or if they decided to proceed another way.
• The nurses that care for you in your home will want to know if the physician has changed one of your medications, or has diagnosed you with something new, or is recommending that you see a particular specialist etc.

2) Individual team members will ask you about your progress with respect to their particular discipline. 

     For instance: 

• The nurses always want to know things like: when was your last bowel movement? any fevers? What has your pain been in the last few days/week? appetite? rate of feed pump/IV? etc.
• The speech and language pathologist may want to know things like: (especially for swallowing difficulties) have you tried eating? drinking? What did you have? How did it feel? (or after a stroke) have you been practicing speaking, practicing your sounds? words?
• The physiotherapist may want to know: what's the pain been like? How long have you sat up each day? walked each day? how far? etc.
• The dietician may want to know your candy intake for the last 2 weeks, what your weight has been each week for 4 weeks, etc.

I know that these examples may not fit your situation exactly, but I think you get the gist. I also know that to some it might be an insult to suggest that you are not aware enough to recall when your last bowel movement was, for example. I am not doubting your intelligence nor am I questioning your memory, but I offer this instead:

• If you are ill enough to need to recover at home, you should conserve the energy you would otherwise expend trying to keep all of the info sorted in your head. Use that extra energy for spending time with loved ones, and actually peacefully recovering.
• Many medications make it difficult to concentrate and/or affect memory even if you are focused in the moment.
• Even when you are well, it is very hard to keep all of the information straight, because, most times, it really is a boatload of information to remember.
• Sometimes ordinary things don't register as important in the grand scheme of things and thus are hard to track. Truly, every community care nurse will, for example, ask you when your last bowel movement was. If you are constipated for 6 days the nurse's response will be different than if you answer 8 days or 16 days.

Well, I think that's it for now. Stay tuned for the next 3 parts of this discussion. Part B will suggest what info you might want to keep specifically for your own records, and why you would want to do this. 

Have a great day!