Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms

by Ilana Jacqueline

  What is my back-up plan if things don’t work? Can you break your lease without an unaffordable financial penalty? Can you move back in with your parents? Will you be able to obtain government funding for living expenses if you can no longer work? It’s depressing to consider these possibilities, but it’s better to think about the solutions for these situations now, rather than during a crisis.

  The first step toward independence is taking a risk. Even though it could end badly, if you set yourself up for success, it’s worth it. The next step is coming face-to-face with your biggest fears around autonomy.

  Address Your Biggest Fears with Easy Solutions

  In the days before I moved out of my parents’ house, I found myself pacing the hallway between our bedrooms. I was remembering all the times I’d shout out for my mother to come help me in the middle of the night when I couldn’t move or something had gone terribly wrong. It would only take her a minute to get to me and I would know that I was safe. I was feeling so much fear about leaving her. I wanted and needed to move out and start my life, but I also had to address my fears first.

  Fear #1: Help! I’ve Fallen and I Can’t Get Up!

  There are plenty of preventative measures you can take to make sure you don’t end up laying on your floor for three days, including:

  Living with a Roommate: Whether it’s a friend or a significant other, not living completely alone can be an unimaginably huge source of comfort. Even if they’re not your main caretaker, just having another body in the house means they’ll be able to help you out of tricky situations.

  Using a Life Alert® System: Hey, it worked for the lady in the commercial! But seriously, Life Alert® and systems like it can be valuable to those who are sick and unsteady on their feet. There are systems that can connect you to an operator who can give you the choice of calling an ambulance or a family member.

  Keeping Your Cell on You at All Times: While I don’t always have mine in my back pocket, I do make sure to always bring my phone with me whenever I go, just in case of emergency. I don’t want to have to climb up the stairs if I’m having a physical emergency.

  Fear #2: Can I Stay Healthy Enough to Keep My Job?

  This was the number one question I received through my blog last year, and it is understandably a common fear. Here are some suggestions on how you can plan to help keep your job:

  Begin Saving: While it won’t always be realistic to save ninety percent of your paycheck, start putting away as much as you can bear to live without. Even if you’re just throwing twenty dollars here and there into your online savings account, it starts to add up.

  Have a Financial Support System and Be Responsible About It: When it came to taking money from friends and family, I felt ashamed. But, the idea of living at home with my parents until I was forty was just as shameful. When push came to shove, if I needed to borrow money, I did. As soon as I could, I paid back what I owed.

  Have a Credit Card and Good Credit: It’s not like you can snap your fingers and instantly have all those medical debts removed from your credit report. You can’t go back in time and erase the month you were late on rent because you were in the hospital and unable to get out of bed. But working on creating good credit or mending bad credit should be a priority for you. At the end of the day, you may just not have the funds to support the extra financial burden that comes with having a chronic disease.

  Check Your Company’s Rules and Your Employee Rights: Not sure if your sick days will cover the amount of days in which you may be sick? Speak with your company’s HR person and try to create some preventative measures to help you stay employed. You may be able to work from home on certain days, or you may be able to take an extended leave. What you won’t want to do is start considering these resources after you’ve already used up your sick days and your employer’s patience and good will.

  Fear #3: What If I Have Nothing In the House to Eat and I’m Too Fatigued to Make It to the Grocery Store and Back?

  You stock up: frozen meals, canned meals, etc. I even keep a couple of individual bags of Chex™ Mix in my upstairs bathroom cabinets just in case I can’t make it downstairs and I need to eat something filling with my medication. If I’ve run out of my stockpile, I can always get a delivery from a local restaurant or call in a favor from a friend who can pick me up something. You can’t always rely on greasy take-out though, so you may consider making and freezing some healthier meals to keep on hand.

  Fear #4: I’m Scared I Won’t Be Able to Handle the Stress on My Own

  Are you really on your own? If you can still reach out to family, friends, co-workers, or a therapist, you’re only a phone call away from a pep talk and a reminder that you can do this. At this point, you’ve learned how to create a psychological, spiritual, medical, and social support system. If you’re still not sure if your network is strong enough, consider revisiting the information in chapters 4, 5, and 6.

  I’ll admit that most of these fears are about situations that are small in the grand scheme of your life with a chronic illness. I certainly have had times that I had to push all this preparedness aside due to a real emergency that no amount of planning would have prevented. What happens if you need to handle serious emergencies on your own?

  Managing Medical Emergencies Independently

  I’ve ended up in the emergency room alone, and I won’t lie to you and say it isn’t a scary place to be. When you’re in crisis and you’re the only one that can speak on your behalf, the importance of independence loses its appeal. One way I help myself through this is by making sure I’ve got the important stuff written down. If you do a little planning like this, something as scary and unfamiliar as a lonely ER room is easier to navigate on your own.

  I carry a list of current medications, allergies, and a list of past surgeries on a set of laminated notecards in my purse. Just in case I can’t speak for myself, that information will be very clear. Download, photocopy, and fill out the handy online “Medication List Card” and “Emergency List Card” at http://www.newharbinger.com/35999. I also have my emergency contacts listed in my phone under “favorites.” This makes it easier for you to find your emergency phone numbers if you’re under the haze of medication. You may also want to keep a list of a few different cab companies if you don’t have a ridesharing service in your town. Here are a few more things to prepare so that your worst fear doesn’t become your worst nightmare:

  Setting Yourself Up for Success

  Prep #1: Location, Location, Location

  You know when it’s a great time to live an hour and a half away from your medical team? Never. Save yourself the agony of schlepping down the highway during your worst symptoms. Even if you see your main specialists out of town, set up a local crew of doctors who are going to be able to help you manage the day-to-day care. Same rules apply for your pharmacy, grocery store, at least one or two pizza delivery places, and a gas station. In the face of being stranded from the resources you’ll need, making these connections locally or moving to a better location may ultimately be more of a help than a hassle.

  Prep #2: Have Your Doctor’s Information on Hand

  If you’re under the care of a regular specialist or general physician, they may be able to guide your ER doctors through your medical history on the phone. If your doctor has a large practice, it may still be difficult to get medical advice when they don’t have their file in front of you. Because of this, many patients seek out the help of concierge doctors who often take on smaller patient loads and can more readily recall details from different cases. Generally, contracts with concierge doctors state that they will help guide your care in emergency situations and hospitalizations.

  Prep #3: If Possible, Bring a Body

  Even if your mom, husband, best friend, brother, or nana can’t make it to the ER with you, try as hard as you possibly can to get a friend (of any caliber) to at least help you get checked in. Sometimes just having a familiar face in the room to hurry up the doctor when you’re
bleeding out of your eyeballs can be useful.

  Prep #4: Remember Your Nurse’s Name and Ask for a Call Button

  This is a critical detail. Remembering your nurse’s name insures liability. While you’re in the ER, the nurse should know you’re not only going to remember her name and the fact that she likes cartoons on her scrubs, but also that if she doesn’t wash her hands before handling your port, she is going to get reported to her supervisor.

  Asking for a call button is also key. Once you’re down, there’s a good possibility that between the IV and heart monitors you may not be able to get back up. Being able to buzz the nurses for assistance can save you a lot of stress (and possibly wet sheets).

  What’s the Worst That Could Happen?

  Fear is just the accumulation of unknowns. An exercise my mother used to do with me was to ask:

  “What’s the worst that could happen?”

  And then I would answer, “I’d be sick in the middle of the night and wouldn’t be able to get a ride to the hospital!”

  She would ask, “And then what?”

  “Well,” I’d say, feeling angry that wasn’t enough. “Then I’d have no ride to the hospital.”

  “And then what?”

  “Then I’d probably have to call 911 and get an ambulance. Or maybe just a cab.”

  “And then what?”

  “And then I’d…get there eventually, I guess. But it would suck.”

  It’s annoying when someone makes you see reason when you’ve been clinging to fear to stop yourself from taking risks. This exercise helped me to realize that while the outcomes of my fears weren’t always pleasant, they more often than not did not result in my intense suffering. Chances are, your fears have already transpired in one form or another. Challenge your anxiety the next time it creeps up on you. What would happen? And what would you do? Have a plan and worry less.

  The Key to Independence: Accept the Unexpected

  My life is filled with unknowns. I have very little control over what’s going on in my body. I can’t stop a migraine if it’s coming. I can’t control how quickly I’ll dehydrate or how a new food will affect my stomach. I’ve accidently dropped my last pill down the drain more times than I want to admit. A good rule to remember when it comes to outsmarting chronic illness is that you can’t prevent situations from happening a hundred percent of the time. But, the preparations and tips provided in this chapter will save you lots of hassle.

  Ultimately, you can’t prepare for a situation you don’t see coming. There will be many instances where you’ll have to just cock your head to the side and say, “Huh. I did not know that cannoli was going to make an attempt on my life,” before ducking into the nearest convenient store bathroom with the most profound regret.

  At some point, you will look at your choices and think: I knew better. I may have wanted a different outcome, but I knew better. You need to start balancing your risks and benefits. For example, If I decide to go shopping this afternoon, will I have enough energy to go to the movies tonight? I really want dessert, but my stomach is already a seven on the flare scale. Will a slice of cake throw me over the edge?

  Independence will mean being accountable for any and every way you decide to tip the scales. There will come a point where you can’t push yourself, you can’t make everyone happy, you can’t pay all the bills, and you can’t be there for every person in your life. The question to ask yourself is, who and what gets priority?

  What Is Your Priority?

  Moving out was a huge boost to my self-esteem and it will be the same for you. Knowing that I could survive on my own was extremely gratifying. It gave me hope about the direction of my life. It was high up on my list of priorities. For me to remain independent, I had to be able to afford it, which meant that I had to be able to work. For me to be able to handle all my clients, I had to be constantly on top of my health.

  Hospitalizations meant unpaid leave. I couldn’t avoid all of them, but I needed to do everything in my power to make them as short and as infrequent as possible. Having a solid treatment plan and a doctor who was available to help me make medication choices was a must. I also realized that I needed to act preventatively. That meant making sure I was at my doctor at the same time every week to get IVs. It also meant starting an exercise regimen through a cardiac rehab program at the hospital to keep up my strength. I also had to stay on top of my medication refills.

  Frankly, being sick gave me near-heroic powers of organization. It completely transformed the way I looked at different parts of my life. For example, how important was it really that I made a home-made soufflé every holiday when it almost always cost me as much energy as I would need to attend the dinner? If scrubbing my apartment floor was going to knock me out of commission for two days, wasn’t it financially more responsible to hire a housekeeper?

  I did a serious intake of what really mattered to me. For me, it is spending time with my family and friends and my dog. It is about focusing on my career so I can have a good quality of life. I didn’t need to keep up with everyone I went to high school with and aggressively stalked online. I didn’t need to cook dinner for my fiancé every night. I didn’t need to put on the song and dance for my in-laws, my judgmental relatives, or even my nosey professors or coworkers. All I needed to do was take care of my needs, and make sure my bills were paid and my health was stable.

  What do you feel is your most important priority in service of your independence? Is it focusing fully on your career or school and pushing your schedule to the limit? Is it stabilizing your treatment by experimenting with newer drugs and therapies that might have unknown side-effects? Is it training a new puppy or nurturing a new relationship? Whatever your priority, hopefully the tools in this chapter will help you to plan and create safeguards for a more autonomous life with chronic illness.

  Chapter 9

  Becoming Your Own Patient Advocate

  It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion. You need to own every nerve ending, every cell, and every action you take using this body of yours. You should never let anyone take away your right to make the choices you believe are best for it. Being your own patient advocate means fighting for your opinions about your treatment to be heard. Have you been using your voice? Have you been heard?

  Often, when the prescription pad is pulled out of the doctor’s pocket, most patients don’t interject. Why would you? You’re not the doctor here! Maybe you agree that the medication will work best for you if your doctor says so. Maybe you have no idea what kind of fungus is growing on your foot, and you trust your doctor to give you the right ointment. However, you must know that there is a significant difference between being blindly led into the wilds of unknown treatment, and being consciously guided by someone you feel is qualified to have an opportunity to earn your trust.

  Smart patients understand that their treatment is a collaborative effort. It takes both the educated patient and the educated physician to find, test, and maintain good health. Being an advocate for yourself doesn’t mean recklessly shooting down every medical opinion you don’t agree with and it certainly doesn’t mean changing your course of treatment without a consult with your doctor.

  Being your own advocate means:

  Recognizing the weight of your choices

  Doing the background research on doctors and choosing the best medical ally

  Maximizing the amount of time you have with your doctor by being clear, composed, and knowledgeable about your medical history

  Knowing when to change your medical care team

  Being a proactive patient

  Fighting for your quality of life

  It’s no question that being your own advocate is a lot of work. Suddenly, you’ve gone from being a bystander to an active participant in your care. You’re now doing the research, asking the major questions, and finding the confidence to speak up. If you want the most out of life with chronic illness, you
’re going to have to fight for it.

  The Choices You’ll Make

  From my first fight with my pediatrician over antibiotics to my insistence that fiber would be a poor addition to my diet with gastroparesis, I’ve had many all-out fights with gastroenterologists and nutritionists who have recommended different diets without taking a strong look at my disease and its symptoms. It’s been up to me to educate my physicians and if they refuse to be educated, I’ve often had to refuse their care. There are only so many times you can eat a kale salad before you fully succumb to the idea that your stomach finds it indigestible.

  It can be a world of protest for patients with chronic, invisible, progressive, and life-long diseases, whose long-term treatment can mean switching on and off medications and trying new or off-label scripts. Doctors, nurses, and insurance companies can sometimes be barriers against your medical opportunities. Take their advice with a grain of salt because even though they really do want what’s best for you, they don’t always know what that is.

  You can’t be afraid to speak up, argue, or worry that you’re being cumbersome with your line of questioning. Somebody’s got to make the judgment call and when it’s your quality of life on the line, you’ll find that you will be that annoying, overly analytical patient. When you hit the wall of your doctor’s tolerance you may feel like you’ve overstepped. When you feel guilty about it, dig deep and tell yourself to get over it. This isn’t an oil change on your car. This is the only body you’re going to have your whole life. Its wellbeing comes before good manners. You have spent your whole life coming to terms with what you can’t change. These medical interventions are a key place for you to exercise your free will and shape your life.