If there is one thing I have learned over the years from going to doctors offices and back home again, is the frustration on the doctor's part that the patient did not come prepared. His/Her frustration then passes on to the patient who goes home frustrated because not everything they wanted to get accomplished took place. This was because they, the patient, came unprepared to ask the questions and have information ready.
I was born with Epilepsy so health was a top priority for me from an early age of 7 and continues to this day. It really became a concern for me after being diagnosed with 35 medical conditions over a period of time. It got to the point I couldn't remember what conditions I had and what medications I took for what. That's what prompted the change that made my life easier and the lives of all medical professions I came into contact with easier.
If you have ever been in a Dollar Store, you know you are inundated with many kinds of notebooks of all sizes, colours and now even shapes. I picked up a red one – what better colour for medical than red? Inside on the very first page I listed the following information:
Date of Birth
Home Phone Number
Cell Phone Number
Birth Date in Full
Health Card Number
Allergies to Medications
List of All Important People (Doctors, Other Supports with names, who they are to me, phone numbers)
There could be other things different people might add such as:
Insurance Company Name and Policy Number
Work Phone Number
School Phone Number
Emergency Contact Person
Emergency Contact Phone Number
And the list could go on depending on who you are and where you live. But the basics should be there.
The next thing you want to do is on a clean page, list all medical conditions you have. If you only have one or two, list them. If you are like me and have 35, I list them alphabetically and according to whether they are a medical issue or a mental health issue. By going alphabetically, it makes my life and the doctor who sees is, much easier.
Turn the page to a new clean one and here you are going to list all the medications you take and what they are for. In my case, I list them by the times of the day I take them: Breakfast, Lunch, Supper and Bedtime.
Certain medications are repeated throughout the day so I only list what that medication is used for once, but many of my medications are used only once so I put why I am on that medication to make it easier for the doctor I am seeing to help me without doubling up on medications or having bad interations.
On the next clean page I write down a list of all the people and organizations I am involved with and explain who they are and what they are for. As an example, Community Care is used to get me to my family doctor in another city. This is billed to the disability pension I am on and they pay the bill. Another organization I deal with is the disability office itself, so I list their information and how to contact them, and if there is one, the person in charge of my file.
I have several of these organizations supporting me and it is important not only for me but for the medical staff to know what supports I already have at my disposal. They can then make suggestions based on what I already have in use.
Finally, I leave a few blank pages so that if I have to update medications or another one of the previous pages, I don't have to worry about messing up my book. I use a colourful paperclip to show where the next section begins. And that next section is where I start writing down symptoms, issues I want to talk to the doctor about when I see him, concerns I may have, etc. I write in any updates since the last visit I had since our last visit here as well. He doesn't have to ask so many questions, I don't have to remember anything because it is all written out and he can write in my book any changes he would like me to make so I have a reference to the changes – because I do have short-term memory issues.
My Medical Alert Book has helped me immensely. When I've been having an asthma attack and been unable to talk, the paramedics are simply handed the book and they can take all my information down without me needing to say a word. I've often heard them say, “I wish every patient made it this easy.” That makes me feel good knowing I have made their job less stressful. When we go through Emergency's doors, the paramedics simply tell the nurse what is happening and they have a full and complete file because I came prepared.
The second part of a keeping a medical journal is to keep a Medical Alert File. It is different because it simply holds all your medical information but does not allow you to write out questions and concerns for your doctor. I make it up in a document with the paper on a landscape orientation to give me more writing room.
At the top of the page in bolded letters it says:
MEDICAL ALERT FILE – current as of ( you fill in the date)
Your full address
Your home phone number
Your work phone number (if it applies)
Health Card Number/Insurance Company Information
Allergies – always make sure these are posted in bold
The next step is to make a table, which if you use Microsoft Office or Open Office, is really easy. You only need 2 columns. The first one for the name of the doctor or specialist, the second one for their phone number and fax number.
Your title should be:
IN CASE OF EMERGENCY:
I always put my family doctor first. I type his name, beside it I put Family Doctor. Below this I put his address. Then I tab over to the 2nd column where I put his phone number and extension if there is one, and his fax number.
I then put the next doctor below that, putting his/her name, their specialty and address. In the 2nd column is their phone and fax number.
Doctors are not the only ones who go here. I also put information about Counselors, Organizations that are helping me, any family I would like contacted if I am extremely sick, Pastors Names, phone numbers and the Church they are from. And I even put the denomination because that is typically the first question asked when medical staff realize you believe in God – what denomination? I don't like denomination because it separates people, but I have to put down what denomination the church is I attend in case my pastors cannot be contacted.
On the next separate page I make a list of all my medical conditions in alphabetical order. It is just a LOT easier that way. I have even gone so far as for my family doctor to sign this part of the sheet so nobody thinks I am making anything up. He is a wonderful doctor and will do anything legal to make my experience with the health care system less stressful during emergencies.
On another clean and new sheet of paper I type up what medications I take. At the top of the page is the name, address and phone number of the pharmacy I use and their fax number. I also list at least one of the names of the pharmacists who work there as a contact person. I then list medication by time of day: Breakfast, Lunch, Supper, Bedtime, PRN. And beside each medication I put the dosage I take at that time and what the medication is used for. If I don't know what the medication is used for, I ask my doctor in my medical alert book to make my life easier, to understand my health issues better and to make the lives of other medical staff less complicated.
Other things you can do to help yourself and to help your doctors include the following, but are not limited to these:
First and foremost, is being honest with your doctors and other health professionals. Remember that they cannot read your mind. For your health team to best help you, you have to be willing to be openly and completely honest with them. Don’t be ashamed of how you are feeling. It is likely a part of your illness and if you are honest with the people who are there to help you, you better your chances to get the proper help and treatment for your needs.
Keeping a journal is always a good idea. Whether you write for the joy of it or write to keep track of your life or special/stressful events, it helps to have a log to look back on. I have been writing since early 1990. I have more than 20 journals full in those years and they are only the DAILY JOURNALS. And the types of journals one can keep are as numerous as you let your mind wander.
Some ideas for journals would be a health journal – one where you write out all your medical appointments (as I have mentioned), what happened, what was done, what meds were prescribed, what you talk about and so on. This is helpful for you to remember things and also for your health team to keep up with what others who help you are doing in their treatment.
A daily journal would be a good idea to just write about your day and get everything out. Many people with mental health issues feel isolated and alone. By writing about your day in a journal, you have a constant, non-judgmental listening ear. You can write freely, without judgment or criticism. Don’t censor what you write. Be honest. Date each entry. Once a year or so look back, if you want to, and see how far you have come – you will be amazed at your achievements.
Other journals could be a humour journal where you keep things that make you smile or laugh. An inspirational journal could include quotes, pictures or anything else you find inspiring or though-provoking. This is a fun one to keep.
A blessings journal could include things you are thankful for. Everybody is thankful for something. Write out the little things we all may take for granted. These could include a place to live, medication to help, clothes to wear, friends, the ability to see, touch, taste, hear and smell, having the ability to get out, being able to walk around freely and so on.
Another fun journal idea would be the art journal where you would keep doodles, art ideas, poetry or anything else you can think of that would go well in your art journal. This is a good one to keep handy.
For a more lengthy list of journals, please contact me and I can offer you many ideas.
If you are prescribed medication to treat your illness, take your medications as prescribed by your doctor. If that means setting an alarm clock for each time you take pills, then do so. The more you keep your medications on track, the better off you will handle things as they come your way. Also make sure you keep your medications ordered in time so you don’t run out and end up in crisis. Don’t abuse your medications by taking more than you are supposed to. There are many GOOD and SAFE reasons your doctor prescribes them to you as s/he does. They have your best interests in mind, so trust that.
A point that many people take advantage of is doing things to sabotage themselves. In other words, if you are taking medications that will react negatively with alcohol or other drugs, stay away from them. The fair majority of mental health medications alone are not good combined with alcohol or illegal drugs. If, like me, you take medications for medical issues as well, don't mix drugs and alcohol. If you are feeling rotten while taking your Prescribed medications, don’t turn to other substances to feel better. First thing, call your doctor or pharmacist to see if this is an interaction. If it is not, call a friend, talk with a worker, call a crisis centre…do something, but don’t get into substance abuse of any kind. You will end up worse, with a good possibility of becoming addicted to the alcohol or other drug. This makes your struggle for good mental and medical health even harder, defeating your attempts to stay well managed.
Being a Self-Advocate is another way of helping yourself. This means that you learn about your illness and you inform people who need to know about it such as educators, family members, or others that you are with on a regular basis. By doing this you are letting them know how they can help you if and when you should need it. Being a Self-Advocate also means keeping up to date on issues that affect you or are related to your diagnoses. Read books, search the internet, get involved with support groups, be with other people who understand the struggles with mental health. Don’t isolate yourself out of shame. There is no difference in having Bi-Polar or Schizophrenia than Diabetes or Asthma. All need medical care, none are contagious, and you can help yourself. Don’t feel down because you have a mental/medical health issue. Be proud that you know about it, understand it and that you can explain what you need when/if the time comes.
Lastly, don’t be too proud to get help. You know your own body and how you are feeling better than anybody else. Be aware of what feels normal for a good day and what doesn’t feel normal when you are having a bad day. Know what you need to do to get the help you need. Don’t be too proud to get the help you need. There is no shame or weakness in needing or asking for help. By helping yourself, you show your medical team, family members and friends that you are responsible, that you do not want attention and that you are not too proud to ask for help when needed. Keeping a journal tracking your moods, etc., is another good idea. It may draw a pattern for your doctors to see if there are certain times of day, week, month or year that things seem to get worse. Every little bit of insight will help the medical staff help you.
Despite the fact that you are the patient, you can be and ARE part of your medical team and not just the subject of the medical team. Remember that your team works for you and WITH you. Your co-operation and your responsibility are necessary for your health to be maintained at a good level. Do what you can to help yourself and when you need it, the help will be there. When people see you trying, they are more likely to want to help you help yourself even more. Take responsibility, take care!