Disease Management – “What?” I hear you say. Yep, that’s right, disease management! If you read the previous article you will no doubt realize that the medical profession is limited in what it can do to help you.
It is important for you to realize this and equally, I think it important that they (the doctors) realize and acknowledge this! Of all the complaints I hear from people with this disease, their disease is (obviously) number one. Their doctors come a very close second. Lack of communication, lack of information and a lousy attitude are the main issues. Nuff said.
So, in the drive for clarity in a confused world let us be clear about one thing. This disease is your disease. Not your spouse’s, not your friend’s, not your doctor’s. It is yours and yours alone. Yours to live with and live by, yours to control or be controlled. Yours to master or be slave to.
So, while we are being clear about things let us also be clear about the fact that monthly, two monthly or whatever monthly visits to your doctor are not going to cut it. If you believe you can have a doctor’s appointment, walk away with your prescriptions and return sometime, weeks or months later and be magically better, forget it!
Sorry, it doesn’t work that way. In the nature of this being your disease it is down to you to own and manage it. Yes, Manage it.
What do I mean by this?
You have to be aware of everything that goes into and comes out of your body. You need to record everything that happens to you every day, multiple times per day maybe.
Some food will make you feel ill, some may not. Record it. Your taste buds will change as your internal chemicals change. Note each time you eat, what you eat and what the outcome was. Were you sick? Did you have cramps? Examine everything you ate the day before and see how you feel today. Better? Worse?
Weigh yourself everyday and record it. Weight can gain or fall dramatically depending on what is happening to you. You need to keep a record every time you take your weight.
While you’re at it, measure your girth. Is it expanding or contracting? Are your ankles swollen? Measure them.
Keep a religious record of your medications. Ensure you take them at the correct times and intervals. Record it.
Measure your fluid intake. If you have ascites you should be on less than 1.5Liters/day fluid intake. That includes water, coffee, fruit juice, cooking juices etc.
Blood Pressure and pulse. Get a machine from your pharmacy and take your blood pressure and pulse every day at lease once. Record it.
Certain medications, especially diuretics can dramatically drop your blood pressure. You need to keep an eye on it.
Be aware of salt intake. If you have ascites, salt retains fluid. Keep below 1500mg/day. Sounds awful doesn’t it? Well, here’s a tip…I used to measure it every day but I also used to go well under my daily limit for a few days and then go for a real good blow-out Italian dinner and not worry about the salt. Look at your salt intake over a week rather than on a daily basis!
For many things you record there are web sites to help you do it, I used an iPhone app for recording my weight and blood pressure. I also used a spreadsheet. If a notebook is all you have then use one!
The reason for recording everything is to look for trends over a period. In between your doctor visits how stable or unstable has your weight been? Has it shown net gain or loss? Have you changed your diet? Have you been feeling sicker or better?
Record how you feel every day. When you go back to your doctor for the next visit, take your records. Discuss them with him. Show him the trends, ask for advice or explanation of what is happening to you.
Your Lab results. Get a copy of them – they are yours! If you feel up to it, graph them. It helps to see what is happening with your blood test results. Are things getting better or worse?
Do Research. Your disease is your enemy, there is nothing friendly about it! As with any enemy, get to know it, get to understand it, be prepared to fight it. Focus on the symptoms that you have and look for ways to treat them individually. Record how things go.
Ultimately you have to become your own advocate. Your own doctor, your own source of knowledge and wisdom about your disease, your own nurse and your own pillar of strength. No one will understand how you feel or what you feel.
Everywhere you look for information you will find conflicts. Do this, Don’t do that…..it is never ending. Make up your own mind, be your own counsel and bear in mind the limitations of medical knowledge in this field.
Only by knowing your enemy can you defeat him. Only through your own dogged determination can you keep fighting and keep fighting you will, you must, twenty four hours of every day. To fight is to survive, to give in…..well, I’ll leave it there.
Disease is not just a feeling ill kind of thing. Disease saps your body, spirit and mind. The mental impacts of disease, especially one that could be fatal is a challenge of huge proportions. It is a challenge you must rise to. It is a challenge you must overcome.
Positive attitude, positive approach and a sheer determination will help you through this.
But, in order to do that you need to manage the beast, manage the disease.
By managing yourself and this situation you will be in control.
That is the only way it can be.
That is what I call Disease Management.
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