Tiffany at Sick Girl Speaks has a brilliant post that is well worth a read - how illness (chronic, or the acute, life-threatening kind) can transform our lives in positive ways.
According to the AARP Public Policy Institute policy brief “Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving,” there were between 30 million and 38 million adult caregivers in 2006 caring for someone who needs help with daily living. That’s 1 in every 10 adults.
Last week, I got a chance to try short-term caregiving. My hubby has been sick for over a week… vertigo, nausea, brain fog, fatigue. Unable to get out of bed for a few days, then only able to teeter totter from bedroom to bath, maybe to the living room, and back to bed. So I was his caretaker for once, rather than him taking care of me. It was finally my chance to treat him with TLC, patience, and kindness. And it was incredibly challenging, for so many reasons:
It was exhausting. I’m already tired, and here I was doing all of my work plus some of his as well. (Why is it that we never appreciate how much our partner contributes to caring for the household until they are not around to do it?) I felt like I was just going, going, going, without a moment to rest.
It was unpredictable. One day he got a terrible craving for a milkshake. He hadn’t eaten much in days, so off we went, at a moment when I desperately needed to be at home resting or doing chores. Another day he told me his doctor had called in a prescription to our local pharmacy… about a half-hour before closing time. Which meant a mad dash to the pharmacy. I like life more predictable, and this kind of thing certainly is not!
It was lonely. I live with my hubby and my pets. When hubby isn’t up and around, talking or even just sharing the same space with me, it’s quiet. No dinnertime conversation, no evening pre-bed chat. I missed my husband so much, even though he was right there in the house with me. And because I was running around, taking care of him and the house, I had less time to stay in touch with friends and family, too.
The person you are caring for isn't at his or her best, so it’s easy for things to get out of hand. The person you are caring for isn’t feeling well. They may be addled by medication, scared, angry, needy and helpless in attitude, cranky, or withdrawn. All of the communication they give you will be affected because the niceties we use to smooth over our every day interactions with each other (thinking before we speak, choosing what not to say, please and thank you, etc.) are missing. You may find yourself falling into arguments very easily.
Overall, it was maddening and frustrating. It’s amazing how quickly you can come to resent someone when caring for them seems to push caring for yourself right off the to do list. The added demands on your time, your earnest wishes for them to get better (who wants to see a loved one feeling miserable), the social silence… I had to go jump in a lake (OK, not a lake, but the local YMCA pool) to calm down at one point.
Caretaker resources and support:
Preventing Caregiver Burnout: Tips and Support for Family Caregiversprovides a slew of helpful tips and links to related resources.
Family Caregiving 101, from the National Family Caregivers Association and the National Alliance for Caregiving
Caregiver.com includes a Regional Resources page that allows you to find local caregiver support groups by state/county.
I have learned the hard way to never, never self-pay when you have insurance. Last April, my husband started a new job and got new insurance, but it took a few weeks for us to be entered into the system and receive our insurance cards. So for a few weeks, I could not prove that I had insurance to doctors' offices that needed to know. And I happened to have a very expensive appointment to keep with a neurologist to do nerve testing. When I say very expensive, I mean it: $4,000. And of course, the doctors' office insisted that I pay up front for everything because they could not verify that I had insurance.
This is a letter to my friend, K, whose primary care doc recently said “You may have lupus. Or something else autoimmune.” I'm hoping this information can help her and anyone else start to cope with a new potential diagnosis.
Dear K,
I can hear in your voice that you are totally freaked out. One day you have a rash, then you get blood work done, then your primary care doc is telling you that you are “sick” with something autoimmune. It’s such whiplash to go from being fine to being not fine in a matter of weeks. And it’s so scary not to know what you have, when the possibilities all sound so awful (systemic lupus, rheumatoid arthritis, dermatomyositis, other mystery syndromes).
Autoimmune illnesses occur when the body “attacks itself”… your immune system overreacts and attacks normal, healthy cells and tissues. The results can damage nerve fibers, joints, and much, much more as these attacks persist over time.
Unfortunately, autoimmune illnesses are hard to diagnose. Many of them share overlapping features (like fatigue, joint pain, and muscle pain) that make it hard to distinguish one illness from another. And they involve a complex mix of symptoms and signs (positive blood test results, etc.) that evolve over time. You can have your first symptom or positive blood test one day, and nothing new for three weeks or three years. Sometimes, you have to wait for the signs and symptoms to “add up” over time to reveal a specific diagnosis, too. You can even have signs (positive blood tests) for an illness without having any symptoms, or have all the symptoms without having any signs.
Given the nature of autoimmune illnesses and how they reveal themselves, it’s probably going to take a long time (months or years) to find out what exactly you have. So, now what do you do? How do you go from the initial symptom (for you, fatigue and a rash) and sign (positive ANA) to a diagnosis?
Track who you see, and what they say. Keep a log of all doctor’s appointments, starting with your first primary care visit about the rash, your first symptom. Track date, name of doctor’s office, name of doctor, and contact information. Take notes during the appointments – what problems did you discuss with the doctor? What did the doctor say about them? What kinds of homework does the doctor want you to do (start a medication? Take another test? See a specialist?) What are you and the doctor hoping to see in the bloodwork, with the test, or with the medication?
Get records from every doctor’s visit and every test you have (bloodwork, x-rays, MRIs, biopsies, or anything else related to your autoimmune situation). When you check in for an appointment or test, immediately ask how you can get a copy of the notes or test results from today’s visit. There’s probably a form to fill out, then you wait for the dr. to either mail or fax you the information you requested. (You might even have to pay a per-page fee for their time and expense in sending your records to you.)
The test results are important, measurable evidence showing what’s going on with you. The notes from the doctor’s visit will probably tell you more than the doctor did during the appointment. Both the doctors’ notes and test results will be important every time you go see another specialist or new doctor in pursuit of a diagnosis – so stick them in a folder and plan to bring them along with you whenever you see someone new.
Keep a symptom diary and photo library. Autoimmune illnesses can cause a wide array of symptoms like fatigue, joint pain, muscle pain, rashes, sores, dry mouth, weight loss or gain, fever, depression, sun sensitivity, nausea, and more. Any time you notice a new little problem… higher than usual fatigue, a stiff finger, a weird fever, or just anything that’s new and bothersome, write it down in a journal. Use the journal to note when a symptom appears, what it feels or looks like, and when it goes away, and when it comes back again (if it does.) If you have a rash, a sore, or anything else that is visibly weird, take a good photo of it and tuck it in the journal. This way, you can let doctors view the rash long after it’s gone from your body.
Make sure your primary care doc is doing the right thing. A primary care doc should ask about your symptoms and order basic screening tests to get a sense of what kind of autoimmune illness you might have. Depending on the symptoms and test results, they will probably send you to a specialist for further treatment. You might go to a dermatologist for a rash, or a rheumatologist for joint pain. They should be able to name a specific doctor that they want you to see; if not, be sure to ask. Once the specialist sees you and reports back to the primary care doc about your appointment, your primary care doc should have a plan of attack (maybe send you to another specialist, or wait for 6 weeks and see what new symptoms occur, or wait 3 months and repeat the blood work, etc.).
Get educated. Don’t try and use the web to diagnose yourself. That will just make you crazy. But when your doctor uses a special term or names a possible illness you may have, go ahead and look that up on the web. Learn to speak their language, and you can have more productive appointments. You can also use the web to learn about the various tests or blood results you may have - what is test X? How is it done? What does it tell you? (For example, the Lupus Foundation of America has an excellent explanation of the ANA test and what it means when you test positive for ANA.) MedlinePlus is a great place to start.
And how can you start to cope with the new fact that you might be sick?
Ask for help with daily chores. Don’t push too hard to be perfect right now. If you are feeling unwell or are just seriously preoccupied with getting to and from doctor’s appointments and tests, ask friends and family for help. Or pay people to do things for you (like clean house, mow the lawn, or even drive you where you need to go). If doctor’s appointments are overwhelming, bring a friend or spouse along for emotional support. Or to take notes during the appointment (your friend, being less involved, may take better notes and follow the doctor’s explanations better than you can in your worried state).
Review your financial situation. Now (before a doctor has pinned a diagnosis on you) is an excellent time to check your life insurance and short- and long-term disability policies. Max out the benefits you can get through your policies…. Can you add more $ to your life insurance? Can you shorten the waiting period on your disability policies, increase the length of time benefits will be given, or change an “any occupation” policy to a “same occupation” policy? It might be worth extra $ out of pocket in premiums now, in case you need these things later on.
Get emotional support and grieve if you need to. It’s so terrifying to be healthy one day, and be told you are “sick” the next. Sick with something they can’t even name yet. Something that could be serious. And something that will almost certainly be a part of your life from now on. You may be pissed off, terrified, overwhelmed, anxious, or in denial. You may (rightly or wrongly) be imagining a future where you are too sick to do anything at all… raise kids, work, be a good spouse, etc. It’s depressing and overwhelming. And you may already be feeling isolated or different… a “sick” person walking in a healthy world that you are no longer a part of. Go ahead and grieve. Talk to friends or family about it, or read online blogs dealing with chronic illness. You aren’t the only one going through this! Also consider books like these:
Wells, Susan M. A Delicate Balance: Living Successfully with Chronic Illness. HarperCollins, July 2000.
Take time for yourself. Once a day, spend two minutes doing nothing but sitting still. How are you feeling? Does anything feel wrong, or is everything feeling well today? Note the bad in your symptom journal and celebrate the good. Eat right and exercise like you normally would. Sleep. Hug friends or pets or spouses. And every time you go to the doctor, give yourself time to compose yourself before you go back to your normal day (being at work, being at home with the kids, etc.). I used to sit in the car and cry for 20 minutes after every doctor’s visit. It’s depressing to have to go talk to people about why or how you are sick and what it’s going to do to you. If you’re a crier, give yourself time to cry. If not, do anything that puts you back in balance and helps you transition from the scary doctor’s visit back into the real world. Pray. Meditate. Have a cup of tea. Go for a short walk. Look at pictures of loved ones, or call and say hi to a friend. Sing along with the radio. The illness isn’t everything in your life. Get that sense of balance back before you head back to work.
Don’t despair. No matter how bad the diagnosis winds up being (and it may not be bad at all… you never know), you will be able to cope. Your life will go on. You will have friends, you will have work to do, you will feel happy again, and sometimes even feel perfectly healthy. You’re going to make it. Hang in there.
And call me, girl, if there’s anything I can do to help.
Al-Anon taught me a lot of skills that I've used to cope with my ongoing health adventures. Right now, my life is just underwater... I'm overloaded, overwhelmed, and overtired, and my days are all racing by in a blink. How can I find my way out of this? Find a way to get a good night's sleep, for starters (three nights in a row of poor sleep is not helping anything). But then, I need to remember to do the next right thing - something Al-Anon taught me. The next right thing is the next thing that helps me and my illness - sleep, rest, time with friends, exercise. (Sometimes the next right thing is paying the mortgage so I have somewhere to do all of those things, or going to work so I have something to pay the mortgage with.)
Many doctors now agree that omega-3 fatty acids (typically found in fish oil or flaxseed oil) can help reduce eye dryness associated with Sjogren's Syndrome. But can they do more? Omega-3s are often referred to as having anti-inflammatory properties, which makes many people who have autoiummune conditions like Sjogren's Syndrome wonder if omega-3s can reduce the "inflammation" behind autoimmune diseases.
Research has been spotty at best (a literature review from the Agency for Healthcare Research and Quality done in 2004 showed mixed or no results for use of omega-3s to treat rheumatoid arthritis, systemic lupus erythematosus, and inflammatory bowel disease), although the medical field is finally catching up to this idea. For example, Dr. Michelle Petri, a lupus specialist at Johns Hopkins University, is about to begin a clinical trial asessing the efficacy of fish oil in lupus patients; and the National Center for Complementary and Alternative Medicine is currently running a study focusing on fish oil and borage oil in treatment of rheumatoid arthritis. However, I know many autoimmune patients who aren't waiting for research to confirm that omega-3s help reduce symptoms... they are on fish oil or flaxseed oil already.
I have considered fish oil or flaxseed oil for my eyes, and wondered about whether it would do anything for my Sjogren's. I tried fish oil pills briefly, but the nasty fish burps afterwards really turned me off. When my allergist recently told me there is anecdotal evidence that fish oil helps alleviate the symptoms of exercise-induced asthma, I decided it might be time to try it again.
I consulted with my rheumatologist about whether omega-3s might help my Sjogren's, and if so, what the proper dose would be. She referred me to a study in the Annals of the Rheumatic Diseases 2008;67:841–848 showing that low-dose omega-3s have beneficial effects on disease activity in patients with SLE and help protect them against the atherosclerosis typical in lupus patients. You can read a project abstract in PubMed, here: "A randomised interventional trial of omega-3- polyunsaturated fatty acids on endothelial function and disease activity in systemic lupus erythematosus". Of course, there is no comparable study for Sjogren's patients yet.
The magic dose in the study was 1.8 g eicosapentanoic acid (EPA) and 1.2 g docosahexanoic acid (DHA) per day. Now I need to run to the store and see if I can get that more easily in pill form or liquid form. My initial research shows that you have to take a lot of pills each day to reach those totals. I'm hoping fish oil in liquid form will provide a more concentrated dose. A fair warning: the study showed that lower doses were not as effective in reducing the "oxidative stress" that contributes to heart and vascular disease in lupus patients.
On March 31, 2009, Oprah interviewed Michael J. Fox about his personal battle with Parkinson's disease. It was a terrific interview because he talked about health and illness and grieving and changing your life to what is. All in a very real but very moving way. He is wry, determined, fighting, and yet somehow at peace. And he said he is more now with Parkinson's than he ever was before it.
When you are awarded Social Security Disability Income, the Social Security Administration sends you a single, lump-sum payment for any back-owed benefits. This check can be enormous... tens of thousands of dollars. And it has no tax taken out of it, which bites you in the bum at tax time.
In my case, it wasn't even my money to keep... I have private long-term-disability (LTD) income from a plan at work. The terms of the LTD policy are that they (UnumProvident) reduce their monthly payment to me by the amount of my monthly SSDI benefit. They had not been doing this while I was waiting to get approved for SSDI (I didn't think it would happen, and I needed the money right then). So I had to send 95% of the check amount (approximately) to them.
The real rub: depending on how you pay for LTD insurance, the monthly benefit you receive from an LTD plan may be tax-free. And mine was. But I had to pay them the back-owed amount with taxable income (the SSDI). Which bites.
I asked my CPA, and she asked several peers, and they all agreed. While it defies logic that you should have to reimburse the LTD company with after-tax or taxable money even though the money you receive from the LTD plan is tax-free, there is NOTHING you can do on your tax return about this. No deduction, no credit, nothing. It sucks!
Which just goes to show - if you can manage it, you need to save some of your LTD/SSDI money for a rainy day - tax issues like this, overpayments (Unum recently told me they overpaid me $1600 and needed it back ASAP), sudden termination of benefit payments, etc.
Sometimes people visit this site looking for guidance on how to speak with and support someone they love, someone who happens to be ill.
When we honestly ask which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not-curing, not-healing and face with us the reality of our powerlessness... makes it clear that whatever happens in the external world, being present to each other is what really matters.
--Henri J.M. Nouwen
According to the Sjogren's Syndrome Foundation, April is Sjogren's Syndrome Awareness Month. View letter from SSF CEO Steven Taylor explaining this year's campaign.
