Okay, so you have a diagnosis. Whatever it may be. You are now among those who fall into the category of having a life threatening/life changing/terminal illness. One of those things that is going to be with you every day, every way for the rest of your life. Once the shock wears off (and no matter if its diabetes, arthritis, cancer, leukemia, lupus, heart disease, whatever, there is a shock factor), the question is now what? What do I do next? Chances are good you are being referred to specialists (how many depends on the illness). So now you don’t have a doctor, you have a medical team. You don’t have an appointment, you have appointments. There is a real possibility that there are lifestyle changes that you should make. It’s actually pretty mind-blowing, and you can miss things. Important things. Some ideas follow that may just help you figure out how to keep up with the new changes.
First and foremost, buy a date book. Does not have to be a $100 thing etched in gold. I get mine at Dollar Tree for a buck. I like the 8.5 X 11 ones – you may prefer a smaller or larger size. It needs to be something you have with you at all times. For you men, who don’t have a wife with a purse, also get a small messenger bag. Again, does not have to be expensive. The recyclable shopping bags work (I don’t like them because they don’t close). Or a 3 ring binder, a portfolio, whatever you are comfortable carrying. Anyway, in your date book, of course you will write down your appointments with various doctors, clinics and therapists. But schedule other things too! Schedule hair cuts, the kid’s ball games, shopping trips, SHOWERS. Yes, I put showers in all caps. You will be amazed to discover that between all the things you now have to remember, you forget to bathe. Because tonight you are too dang tired and feel lousy, so you will do it in the morning, but you oversleep so you run a wet washcloth over the important parts and run out the door, swearing to yourself you will shower tonight, but again you are in pain or tired (you get the picture, you may have done this). So schedule your showers. Schedule EVERYTHING. If you have a phone with a calendar, or a calendar in your computer, utilize them! Set alarms to go off. I personally have an iPhone – each appointment gets 2 alarms, one 2 days before, one either 2 hours or 1 hour before (depending on how far away it is). I have an alarm that goes off at 8 pm every Friday evening to remind me to do the pills for the following week. Also in your date book, write down, or mark in a vivid color, when you need to handle refills of your medicines. There is nothing worse than that sinking feeling on a Sunday morning when you reach for the medicine bottle to discover there is one pill left, and Monday is a holiday. With our personal medicines, the VA asks that we submit refill requests 2 weeks before we run out. Some insurances won’t allow for that much time, but you need to be very aware of when you will run out. Also mark down when you have used the last available refill. Most medicines are 30, 60 or 90 day supplies – when you use the last refill, that is how many days you have until you run out. Many doctors will not authorize more refills without seeing you first. Know what your doctor’s procedure is on this. Very few, if any, doctors or pharmacists take ignorance as an excuse. If the doctor says refills take up to 72 hours, refills take up to 72 hours. They are not going to call you in a prescription in 5 minutes just because you forgot.
Also, in the front cover of your date book, write down the name and phone number of every single doctor, therapist, nurse practitioner, pharmacy and medical supply house you deal with. But I have a smart phone, you say, all the numbers are in there. Ok – great. You also have to use a bathroom, where there is water. Your phone is in your pants pocket, and you have to remove your pants to take care of business. OOPS – phone in the toilet – phone numbers vanish. Or you set your phone down on the roof of your car to get your keys out. You are in a hurry, you hop in the car, drive off, get about a mile up the road and go to make a call……..OOPS. (I actually did this – phone and wallet. I’m sure I looked like a right-sided idiot walking the side of the highway looking for my driver’s license, credit cards, and pieces of my phone. From the kind of things we found – others don’t bother to even go looking). So write down the numbers.
In the front cover, which is often blank, make a list of every single medication you take, dosage, and doctor. Sound dumb? Okay – you get sent to a dietetic consult because you are diabetic, and she wants to know everything you take. You can name off the vitamin, but then your brain does this cool scramble, and all you know is the blood pressure pill starts with a C, and the pill for sugar is kinda orange/peachy color (you think, but that may be the arthritis pill) – you get the picture. If it’s all written down, there is no question. Yes, include supplements. Especially include supplements – there are some medications that don’t like certain vitamins or foods or other medications, and your doctors need this information. My primary doctor asks that I bring my “santa bag” to every appointment – in it are the bottles for every single medication – prescription and over the counter – that I take. That way he has no questions – he sees each bottle. The other reason for having every medicine written down is in case of emergency. Lets say, for instance, you have a car accident, and you are unconscious. You are in a position of needing a medication. If the paramedics, or ER doctors do not know what you are taking, they can make a bad situation life threatening by administering the wrong drug!!!! So have your medications listed in your date book, and also on a card in your wallet.
If you are dealing with diabetes, or any other illness that is affected by what you eat, my suggestion is either another date book, or a spiral notebook for a menu. Don’t cringe – I saw you cringe. It is not as hard as you think! Make a list of the foods you like that you can have. I do menus a month in advance here – we get paid once a month, and the menu determines the grocery list. Include eating out. No matter the illness, chances are pretty good that food choices will impact your illness, or be impacted by your illness. Include all three meals. Include snacks. There are also medications out there that are negatively impacted by certain foods. If you have to take one of these, know what foods you need to avoid – pretend you have an allergy to it!. If your illness is compounded by a food allergy, a menu will help you vary your food choices while avoiding the foods that will just make you sick. You can also figure in those days when you know you are having a treatment and will need lighter fare. If you know your treatment puts you in bed for a day or two, and you are the main cook (my personal situation), you can plan ahead and have supper in the freezer – even your teenager can put a frozen casserole in the microwave and heat it up – taking the pressure off you when you aren’t feeling all that great. Many times, your main physician will suggest a visit to a dietitian or nutritionist. Do this. Don’t brush it off – while many of the things they say may not be what you want to hear, your body is in a fight now, and the type of fuel (food) you give it for that fight is vital – on par with having the right medications. On the other line with diets – stay away from “fads”. If it costs money to do it, chances are they are far more interested in your checkbook than your health. Before you write that check – ask your doctor or pharmacist. They are a great source for knowing the medical scams (and there are PLENTY).
One other thing we have done here, with a good bit of success – we have dry erase calendars on the fridge. Mainly because we deal with multiple schedules here (myself, my husband, my son and my grandson). I have procedures from time to time that require that I have a driver – I don’t need to schedule those the same day as my husband or son has a doctor appointment, or the same day as my grandson has speech therapy, because my driver is usually my daughter. Ours go for two weeks, so anyone can visibly see what’s going on. There is also a spot for notations on the side – handy for those appointments more than two weeks out that will affect more than just the person who has to go.
The other thing that needs to be hand in hand with your date book, is a notebook. Small, medium, large, whatever size. They have the little spiral memo pads for about 27 cents at Wal-Mart. My husband uses one of those for his blood sugar readings. But the notebook you need is for questions. Yes, questions. The one that hits you at 2 am when you can’t sleep, but by 9 am when you are having your coffee you have forgotten all about. The one that you think of while you are cooking supper. Whenever – write it down. Ask. If you remember nothing else from this blog post, remember this: THE ONLY STUPID QUESTION IS THE ONE YOU DO NOT ASK!!!!! So write down those questions, and take them to the doctor with you! Personal opinion here – if your doctor does not take the time to listen to your questions, no matter how trivial they may seem, I would research a second opinion. You pay your doctor for his time and attention, there is no reason why he should not have time to listen to your concerns. Just my opinion – also the way I live.
The main thing is, in my opinion, once you have a life changing/life threatening/terminal diagnosis, it becomes a part of your everyday life, whether you want it to or not. Yes, your illness is now part of your life. It is your choice where your new title goes. Are you now Cancer Patient Joe Smith, or are you Joe Smith, Cancer Patient? How you approach your illness determines placement, and the choice is yours. My suggestion is keep you first, illness second. Because you are in essence the same person you were before – just with a couple of adjustments.
These are just a couple of the things you can do to manage your illness. Notice I said you manage the illness, not the illness managing you. No matter what the diagnosis is – put you first, always. Even when you have to stop every 50 feet and take a break from walking, even when you get to the point you must be in a wheelchair, you are still you – the illness is part of you, but it does not have to define you. Yes there are times and circumstances when it will change how you do things – but it never has to define you. Unless you let it.
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