Professional Patient

Caught in the No Diagnosis/No Treatment Purgatory

My lack of posts lately has probably clued you in to the fact that I feel terrible. And have felt this way for several months now. Unfortunately, I am caught in the limbo of having no diagnosis of my problem yet... and thus almost no treatment for it, either. 

My tired, weak, shaky, tingly muscles could be signs of neuropathy, myopathy, or some other neuromuscular problem. And my docs are wisely waiting to know what I have before they start prescribing treatments to improve my situation. It's important they wait until they are certain, because treatments for my suspected problem or problems vary widely. If I have small-fiber peripheral neuropathy secondary to my Sjogren's Syndrome, taking a higher dose of steroids may help. However, if I have myopathy from taking steroids in the first place, taking a higher dose of steroids will only make things worse!

So I wait, and take the occasional dose of Advil or a mild muscle relaxer in hopes of getting a little relief.

If we can ever figure out what I have, then I hope to get back to a regular posting schedule. 

Learn more about small-fiber neuropathy:

Small fiber neuropathy: A burning problem, Jinny Tavee, Cleveland Clinic Journal of Medicine. 

Small fiber sensory neuropathy, from Johns Hopkins Medicine.

Learn more about myopathy:

Myopathy information page, National Institute of Neurological Disorders and Stroke.

Corticosteroid-induced myopathy, from eMedicine. 

More Helpful Tips on Coping with a Cervical (Neck) Collar

George Flanagin's ACDF portal has excellent tricks and techniques for coping with life in a neck collar. I especially can relate to his explanation that once your collar is on, your vision shrinks to what is directly ahead of you. It IS a little nauseating. I used to get seasick trying to shop at the grocery store or somewhere like Target. I tried walking down the center of a row and looking side to side... a recipe for dizziness and sour stomach. I finally learned to stand against one side of an aisle, with my back to the shelves, and look across at the items on the other side of the aisle. I would side-step my way down the row, then switch so my back was against the shelves on the other side of the aisle, rinse, and repeat. I'm getting tired just thinking about it now!

Best Hobbies for Time Spent "Resting Up"?

I am getting sick with a cold, and I've recently had a higher than usual level of exhaustion, muscle aches, brain fog, and new neuropathies. So I know I need to rest - tonight is not the night to go shopping, vacuum the house, do my homework, or tackle the 4 loads of laundry that are waiting for me. 

I've been in this "resting up," "trying not to get over-tired" mode for a few weeks now. And I'm sick of it! Bored silly. And endlessly frustrated at all of the things I've had to ignore while I try and get my energy back. 

How do you like to spend time when you are too mentally and physically tired to do anything but take it easy for a while? (But not so tired that you are sleeping all the time?) TV gets to be too much. Reading actually can be too physically demanding for me sometimes - the effort of holding the book and turning the pages can be intense if my neuropathy is acting up. And my balance is a little wobbly, so I'm not doing much tai chi at the moment. 

What's a peaceful, happy, and engaging way to while away hours while you are resting? Knitting? Scrapbooking? Writing letters or emails? What works for you? I need ideas!

Let’s Talk About Brain Fog

I have a very embarrassing problem – brain fog. It’s scary, too. So scary that I don’t talk about it with anyone in my real life (my rheumy hears all about it, but she’s the only one). 

I suspect I’m not the only shy person dealing with brain fog, alone. Brain fog makes it really hard for me to concentrate and do basic tasks, like write an email at work. It makes it very hard for me to find words when speaking… finishing a sentence can be a real challenge. It makes it easy for me to lose my train of thought… in the brief time it takes me to walk into another room in my house, I can forget why I wanted to come to the room in the first place. It makes hard for me to stick at a task for a long period of time… I need many more breaks when reading, for example. And it makes me feel so very, very tired. I never have brain fog and yet feel peppy and awake… I always feel so tired that I could lie down and call it a day at 10 in the morning. 

This is tremendously scary to me…. I have always been little miss perfect, especially back in my school days. I had the determination and drive to be good at everything academically. In my work life, I have relied on my ability to concentrate deeply and for long periods of time to get ahead. I have also been the lady with the silver tongue most of my life… always quick with an SAT-level vocabulary word. So much so that I work as a technical/science writer… I write and edit all day long, documents full of specialized technical words. I have to be sharp. And my vocab/writing engine has to be at full rev. 

But brain fog turns my mind against me. Is my mind going to work today, I wonder? Will it drop away from me suddenly, perhaps in the middle of a key project? Or will it never show up in the first place? Some days, I’m pretty good. Some days I’m completely not. It’s like my brain is wrapped in cotton and my thoughts just can’t get through. I never know what to expect. 

Brain fog was an insidious invader that crept up on me very, very slowly… so much that I didn’t really notice it had arrived. I just knew I felt awful all the time. When I started on prednisone last fall, my brain fog improved a lot. My mind started working better and more reliably. That’s what made me realize I had brain fog in the first place. If I hadn’t started on prednisone, I would never have realized how much brain fog had affected me. 

My brain fog is probably associated with my Sjogren’s syndrome. People with autoimmune conditions like lupus and rheumatoid arthritis, and other chronic conditions like fibromyalgia, report brain fog at higher rates than healthy people do. Theories abound – many brain fog sufferers also experience chronic pain, which lowers the quality of their sleep, which may impair brain function. A recent MRI of my brain also showed mild “periatrial flare”, which is not unusual in autoimmune patients. Whatever causes periatrial flare may be making my brain slow down. Stress can aggravate brain fog, certainly. And certain neurological medications (like Lyrica) can also produce or worsen brain fog. 

If you have brain fog, are you as embarrassed and secretive about it as I am? It peeves me to no end that I can no longer count on my mind 100% of the time. I live in fear that someone at work is going to tell me that the quality of my work has slipped and they have to end my employment. The stuff of nightmares! 

I try to cope with my brain fog by keeping lists and calendars, using my email and scheduling program’s flags/reminders, keeping a steady sleep routine (no sleeping in excessively late on weekends), avoiding excess caffeine and sugar (both of which can cause energy slumps), and using whatever immunosuppressant drugs my doctor will prescribe for me. What do you do? 

Learn more: 

Chemotherapy was one of the first recognized causes of brain fog. See New York Times, “The Fog That Follows Chemotherapy”. 

“Brain Fog, Is it Sjogren's Syndrome?” This article was taken from a talk titled “Brain Fog and Other Central Nervous System Symptoms: Is it Sjögren’s?” by Susan McDermott, M.D., at the SSF National Meeting in April 2003. 

Saying No to Overdoing It

My crushing and unpredictable fatigue is the most difficult part of having Sjogren's Syndrome. There are some basic things I can predict about it, however. Like knowing that a day sightseeing in Manhattan in July heat would kill me. Smaller, less strenuous sightseeing trips have nearly destroyed me in the past, so there's no doubt that a large, ambitious, 12-hour jaunt in NYC would do me in. So why am I having so much trouble saying no? I know it would leave me useless for days afterwards, and that only a short while into the trip I would be so tired and whiny that I would be ruining everyone else's day. But I WANT to go! Argh.

This trip would be with my 13-year-old half-sister who is visiting from Atlanta, and my wonderful husband, of course. I think reason #1 for my anguish is that I want to be there to experience it with them, my loved ones, so we can have yet another terrific experience together. I think reason #2 is the flip side of that - a fear of being left out. Then there's reason #3 - my mother in law, who thinks I'm strange and aloof as it is. This would just be more evidence of the same. And reason #4, an oldie but goodie - denial, or hoping against hope that THIS time everything will be fine and I can sightsee just like any other healthy person. Ha, ha.

I have to remember in moments like this that my goal is to manage my health and energy so I can be there for my friends and family day in and day out. Over the long term. Life is a marathon, not a sprint. And I think my family would react more to extravagant time-outs caused by flares than to an everyday preference for restful activities (and a willingness to sit out on more active stuff that might push me over the edge). I also remind myself that things like Prednisone and steady exercise have improved my energy levels very gradually - with better drugs or even more exercise, I may find myself able to do more in years to come. 

The Ten Opportunities of Illness from Tiffany at Sick Girl Speaks

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.

Read more: The Ten Opportunities of Illness. 

The Caretaking Hokey Pokey

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.

You Might Have Lupus. Now What?

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. 

Selak, Joy and Overman, Steven. You Don't LOOK Sick; Living Well with Invisible Chronic Illness. 

Or Michael J. Fox's new book, Always Looking Up. 

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.

Life on Overload? Try the Next Right Thing

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.) 

The next right thing is not always the next thing that I actually want to be doing... and it is never, ever something that someone else thinks I should be doing. So my house is a mess. I have piles of paperwork everywhere. I'll get to those when I have more time and energy. But right now, the absolute next right thing is to take some Advil for my head and body aches, put on my PJs, and go to bed. Immediately. 

Making the Most of What Remains/Michael J Fox on Oprah

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.

He explained that Parkinson's made his life change for the better.... he now appreciates every day, and drops anything for his children at any time because he knows family is the most valuable thing in his life.

He also talked about acceptance in a moving way. I have often realized, thanks to my health concerns, that life is about making the most of what you have (what remains) rather than pining for a time, a place, a family, and a body that lie in a distant past. And loss is inevitable... for anyone, not just someone who is ill. We are all at some point in our lives going to lose our looks, our "healthy" status, our ability to run and jump or hold small things or tilt our heads up to the sky. We are going to lose people we love, pets we love, jobs and homes that we love. We will find ourselves at times with few friends to lean on and little (if any) money in the bank. 

In the face of this transience, of not possessing the things and people in our lives forever... you can choose to cope in one of two obvious ways. You can resign in despair, steeled against a depressing stream of coming grief and loss, or you can choose to feel the freedom of living in the now. You can hide in bed, or see the beauty and peace in what you have today, the things that are all around you. Things you might take for granted as a healthier person who is occupied with career, achievement, acquisition, and the daily grind. 

Life throws all kinds of challenges at us that force us to re-envision ourselves to fit what we have in our hands to work with at the time. It's devastating sometimes, but it does give us a chance to practice just being ourselves and doing the best we can with what we have. Life is about making the most of whatever remains in our lives, be it energy, intelligence, money or love.