You Are Here: Interstitial Cystitis Network : Ask Frannie : December 2004

A new ICN column of practical tips on living with chronic illness by Frannie Rose, author of Fixing Frannie!

Frannie Rose, author of Fixing Frannie, available online at www.amazon.com & www.barnesandnoble.com, is a Patient-Advocate, Inspirational Speaker and Writer on issues relating to keeping your spirit alive when dealing with chronic illness, and the medical system today. Copyright 2005. Frannie Rose. All rights reserved.



"Fixing Frannie" is one woman's story of achieving diagnosis and her surprising 15 year journey through the medical system. It is an honest and uplifting story of laughter, challenges and heroes and most of all finding the medications that changed her life.
Now available on Amazon.com

 


::: December 1st, 2004 :::

Dear Frannie,
Q
. What can I do to avoid panicking while waiting for a serious medical test result?

A. From a patients point of view, this may be a very taxing time. I have been through it myself many times and it doesn't seem to get easier, even when tests are repeated and I have been through them before while knowing what to expect. However, I have learned over the years that they are only tests. They don't evaluate me as a person, and they are never as bad as I imagined them. They may show things we are afraid to face in our future, but really, the future of my life really is determined by me, not by the tests that my doctor does.

There are generally two factors that a patient deals with when having a medical test or procedure. The first one is the fear of the test itself. Sometimes we may fear a test being given may be painful or require preparation that is difficult. In this instance, our minds may get carried away. The best way to deal with this is to follow what I call the "NOW rule." The test is not NOW it is in the future. Don't overwhelm yourself trying to imagine how it will feel then. Try to find a way to assume that when the time comes you will have the strength and the energy to get through it. Right NOW is all that is ever important. You will deal with the issues surrounding that test in the time when you take it. Focus on right NOW. Fears and anxieties do not exist in the NOW. Try to keep your thoughts in the NOW and focus on the NOW as much as you can.

The second factor is finding out the result of that test or procedure. If your doctor has given you the possible diagnoses that he is trying to rule out and it is scary to you, ask the questions about things you fear. Tell your doctor your fears. Usually you can get some reassurance from your doctor. Set up with him a way you can get the results as timely as possible so you do not have to wait. He will understand. This way, you are not spending days in front of the phone waiting for serious test results. And remember to live in the NOW in between as much as possible.

A Note From the doctors point of view: It would help to have a good understanding of the test before it is done. Why it was done? What are the possible outcomes? What will the doctor do with positive or negative results? Being prepared and informed can be helpful. Other than that the question comes to how you avoid panicking with any of life's 'results' (Did my Mom make it safely home on the plane? How did I do on the SATs?) Joel S. Levine MD

Dear Frannie,
Q. When I am in a different environment, or on a trip changing my routine, I forget to take my medications. What can I do to make it easier to remember them?

A. This is something that people on many medications struggle with. When our routine changes due to work, guests visiting, vacations, changes in plans, we tend to forget our routines of taking medicines. One thing that is helpful is to take your pills out every morning when you wake up, and put them in either a medication holder, or a small cup or bowl. I wake up each morning early and put my medication out in a small bowl. I think of the day ahead and at that time, I put my medications in either my purse or keep them at home. (I always have a supply of each medication with me in my purse.) I try to arrange all my doses around meals, as I know I have to eat my meals on time in order to get my medications on time. I arrange an afternoon coffee or tea time for myself as well, where I take additional medications. I have become very rigid about meals and this coffee time in my life, as if I go without medications it can mean days in bed for me.

My best suggestion is to take out your meds at the same time of day every day... either at night before you go to bed, or in the morning. If you have to have an early morning dose of a medication, make sure whether you are sleeping late or not, to set your alarm for the same time every day. Take your medication and then go back to sleep if you are sleeping late. But do not sleep through your medication time, as it will throw you off for the rest of the day. I wake up at 6 no matter what I am doing, take my meds, put them out for the day, and either go back to sleep for a while until they work if I am not feeling well, or get up and start my day.

Dear Frannie,
Q. My spouse is tired of carrying the financial load and has asked me to work. I feel it would be medically detrimental to me and would make me worse. I have a chronic illness that has medications to make me more comfortable but I am disabled. What should I do?

A. From the patient's point of view this is a very hard question to answer. No doubt it is hard on our caregivers to carry the load and be the only one with the total responsibility for working in this day and age when most families are two income families. Yet, it is also hard on the one with a chronic illness who does not want to worsen their condition. When you are dealing with a chronic illness and you feel you cannot work, then it is time to have a heart to heart with your doctor to determine his or her opinion on your illness. Is there a cure on the horizon? Do your medications alleviate many of your symptoms? How is your endurance? How well do you function at home? Can you drive? These are things that you and your doctor can discuss and then perhaps bring your caregiver into the discussion.

If this is done, it may help your caregiver understand things from a medical perspective. By having this discussion with your doctor, perhaps your spouse can develop a new respect for what you are dealing with. If finances do not allow you to stay home from work without income and this is what your doctor decides, then it is time to look at disability insurance options and/or social security disability application.

It sounds like your spouse is feeling overwhelmed with responsibility. Marriage is a union where both partners communicate their hopes, fears and needs. By all means listen to your partner, and if you cannot come to some decision after hearing your doctor's evaluation, perhaps then it would help to have a counselor in on the discussions between you and your spouse. It doesn't mean you are a failure. All it means is that your journey through chronic illness takes some adjustment on both your parts. This is to be expected. Chronic illness is not an easy adjustment, is it?

A note from the doctor's point of view: What does your doctor believe? There are criteria for disability. If you are disabled you are disabled. By the same token having a chronic illness, per se, does not mean that you are disabled. Ask your doctor. Joel S. Levine MD

Two of this week's questions were answered in part by Joel S. Levine MD, a skilled, compassionate and caring physician at University of Colorado Health Sciences Center, in Denver, Colorado. Dr. Levine is a Gastroenterologist and Internal Medicine doctor who deals with many patients with Chronic Illnesses. He is a great patient, family and medical advocate. Thank you, Dr Levine for your important contributions to this column.

Life-raft concept for the month:

"Whenever anything negative happens to you, there is a deep lesson concealed within it, although you may not see it at the time. Even an illness or accident can show you what is real and unreal in your life, what ultimately matters and what doesn't." -Eckhart Tolle

What lessons have you learned from your chronic illness? Do they come to you automatically as I ask this? Or do you really have to think deeply before you come up with anything? I assure you, there are answers to these questions. Its merely how far you have come and how much you have thought about it.

Gifts come to us in all kinds of ways. Some have said that on the other side of misfortune lies opportunity. I have sent you information on that in past columns. Others say that difficulty points you down a different road, one that you may not have chosen before, but one that you will come to know and learn much from.

I can assure you in every new day lies a lesson for you to learn. Some are painful and some are glorious. Life can be bittersweet. We have to learn to take the bad with the good and the good with the bad. Remembering also that there is a flip side to any situation....we can see the forest through the trees, we can learn about ourselves, about our loved ones. We can learn slowly how to change our lives.

Yes, you have a chronic illness. Yes, you have pain issues, days you feel awful and fatigued. But look around you at what you do have! These are the times when you grab and hold what you do have. For before you were ill, you might have been too busy and too uncaring to spend these moments of love with the ones who love you.

And if you have been abandoned by loved ones, it can be very painful and sad. For you dear hearts, you will learn how to open up your life to others outside of family who can be even more caring and kind to you. You can attend church, temple, or religious services and meet caring people. You can form a support group for others with chronic illness. You can reach out on your computers and find others to communicate with each new day. Whether or not you like it, with chronic illness, a new world opens up to you....a world you only noticed from the outside before. And with it, comes a deeper understanding of suffering and those who suffer. A new caring and compassion that might not have been there for you before.

Then there is nature and the things you took for granted. There are books to read and magazines and newspapers to learn from. Learning can be endless and it can open up a whole new world in your areas of interest. You may not be financially productive, but you can certainly talk, and express your educated opinions on things that you have learned in your free time. You can write, and paint and sing. Yes, sing!
And you can help others. You can reach out and do the things that make you feel as if you have something important to contribute. Some of you will find a deeper meaning to your lives through doing this. Others, will perhaps find newer deeper interests to help them find meaning in their lives again.

And if you learn to live in the NOW, you will find wondrous opportunities to learn, listen and appreciate the world that you can be a part of at your own pace. Life is still out there for you to live NOW, even if you cannot work, or if you feel ill much of the time. Make it work for you NOW. Value your time with your family and friends NOW, and value the new things you learn every day.

Yes, there are deep lessons to learn from having a chronic illness. Let them be helpful in overcoming your old attitudes toward sickness by bringing a brand new world to your doorstep! Begin by creating a brand new you!

I assure you, better days are ahead of you.

Let us walk down this healing road together.
Always with peace and love,
Frannie

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Disclaimer: The IC Network and Frannie Rose strongly urge you to consult a health care professional on all medical treatment issues. Do not substitute any of the above information for that of your physician or health care provider regarding your medical condition. Only your medical care provider can and should give you medical advice. Under no circumstance should you consider any material placed on the IC Network as medical advice.

Revised: 11/30/05 - kj