First Hide All the Mirrors: Chronic Illness & Appearance



I am vain. Generally I like how I look. Not beautiful, I am grateful to my mother (who was beautiful) for giving me a decent face. That face is now quite puffy and I can no longer fit into much of my wardrobe. I waver between extreme self-consciousness and forgetting about it until I look in a mirror or worse see a photo or video of my puffed-out, hollow-eyed self. The longer I live with the puffy face and body the more it’s become the new normal. Sometimes that just depresses me. Sometimes that helps with acceptance.

Illness and its treatment can alter your appearance until we don’t recognize who that person in the mirror is any more. It can make you gain or lose too much weight, drain your complexion, cause dark circles under your eyes, make your hair thin out or fall out completely… We feel we look old before our time. Make-up is a girl’s best friend but you can’t hide everything under concealer and blush. All of it can do a number on our self-esteem because we are attached to how we look. That’s not being vain, that’s being human!

What helps with acceptance? A huge thing for me is how kind and supportive people are. Family, friends and clients let me know the change in my appearance doesn’t matter to them. In the last few months I have heard several versions of “I know you are going through a hard time, I see it, but you are still beautiful.” Even when I am not in the mood to believe it, I feel their sincerity, the kindness. Allowing it to sink in makes me feel all warm and good inside.

How do you handle the changes in your appearance as a result of illness or treatment? Please share your wisdom or frustration! It’s all good!

Side bar!  A friend who knows how my puffy face makes me feel bad told me about Ashley Judd. She went through some very public criticism for her puffy face, the result of having to take steroids for an illness! She is very articulate about how the change in appearance can be criticized by society and how cruel that is towards all women!

The Rise & Fall of Weight Gain On Prednisone



Ten weeks ago I was put on prednisone to treat a relapse of nephrotic syndrome. Ten weeks ago I weighed about 145 pounds (I’m 5′ 2″) and was lamenting (whining?) about how hard it was to lose those last five lousy pounds.

HA!

How I long for those days!!! Since being on the prednisone I have gained close to twenty pounds. That’s up two dress sizes in two months. I am not here to bitch and moan, although it kind of looks like I am. I would not insult you like that! Many, many people have much worse health problems than I do and more difficult weight issues than I do. It’s not the degree that’s important. It’s that we all have more in common in our pain and discomfort than not.

On another day I will write about how we reflect on our own story in comparison with other’s, the good and the bad about it, when doing so uplifts us and when it only makes us feel worse. But that’s not for today.

Today is for anyone out there who not only struggles with weight, but struggles with weight on medication that tries its hardest to make you pack the pounds.

Because how we look does make a difference in our self-esteem. As much as I sincerely love and try to practice the “I love the inner me” message, I also like how I looked and felt in a size 8 pencil skirt.

On another day I will write about acceptance. Meaning, there’s been a shitload of ‘nothing I can about it so I better learn live with it in serenity ’cause getting mad just makes it all worse.’ But that’s not for today, either.

Today is meant to inspire us to do what we can to stay in control when the weight-gain undertow is pulling us out to sea.

As much as we hate prednisone, we are grateful for it. We take prednisone for the treatment of inflammation, asthma, arthritis of all kinds, inflammatory bowel disease, sarcoidodis, lupus, kidney disease, skin problems, allergies and more. Without it we would be dealing with a heck of a lot more discomfort than extra poundage.

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Q: When Is Having a Chronic Illness a Good Thing?



Editor’s Note: Struggling with my own chronic illness issues lately, I’ve found it difficult to admit that sometimes it can get the better of me. Having the energy to write has been a challenge. My mind badgers me to post something or else I’m guilty of neglect. Neglecting the blog, readers, my integrity. As we know, it is sooo easy to think the negative about ourselves. When I went cruising into the archives to look for inspiration, I found this post. As soon as I read it again, my mind settled into a more peaceful place. I hope it you find it helpful, too.

Q: When Is Having a Chronic Illness a Good Thing?

A: When it makes you a better, deeper, more thoughtful person.

Yesterday my friend Mary Cimiluca sent me this note. Ironically I had been looking for this very quote for a month! Or maybe it wasn’t irony. Maybe it was one of those cosmic, spiritual connection things! Now that gives me goosebumps! Whatever it was, I was very happy to receive it. Mary is the Producer and Writer for the Website and Facebook pages for the Viktor Frankl Movie, Victor & I, a very cool and needed project documenting the genius of Dr. Frankl. It is amazing she had any time to write me at all!

With her permission, her message…

” I thought you might enjoy this quote a friend sent me today since like me, you have talked about living with chronic illness…this is  from the book, “The Unquiet Mind” by Kay Redfeld Jamison… In her epilogue she writes, given a chance whether to choose her illness or not, she says that she would (and now I quote her):

‘…Because I honestly believe that as a result of it I have felt more things, more deeply; had more experiences, more intensely; loved more, and been more loved; laughed more often for having cried more often; appreciated more the springs, for all the winters; worn death ‘as close as dungarees,’ appreciated it – and life – more; seen the finest and the most terrible in people, and slowly learned the values of caring, loyalty, and seeing things through.’ “

Many who struggle with chronic illness, or care for someone who does, feel the same way. Can you relate to this quote? Please share your thoughts.

Chronic Illness: Six Stages of Grieving a Relapse



Sometimes there are articles that are hard to write but I know I have to. I can’t avoid it any longer. I have to write about my relapse.

Since my twenties I’ve had this condition called nephrotic syndrome that is prone to relapse. (Later I was diagnosed with scleroderma, an auto-immune disease, a separate issue) Nephrotic syndrome is rare which makes it weird that I would get it at all. It’s not kidney failure. It’s a dysfunction of the kidneys that can turn ugly if not treated but it is treatable. I relapse, I take prednisone, my kidneys recover, I try to get off the prednisone. That’s the short story. The longer one is more painful and has its share of emotional distress. That’s the story that is hard to write.

My last relapse occurred about six years ago. It was very bad and lasted quite a while, but once recovered and off meds I had a nice long stretch of health and I took total advantage of it. Anyone who has experienced remission from a chronic illness or an acute life threatening condition knows the feeling. Like a saved sinner I gave thanks every day for my cherished health.

Last month I wrote about the stress I was under. A few weeks after that I noticed a telltale sign that the nephrotic syndrome had returned. Dr Elizabeth Kubler-Ross’s five stages of grief apply so well to my emotional response to relapse I decided to use them as an outline.

Denial. The signs that I was relapsing were right in front of me but I kept telling myself, ‘Nah, I must be making this up. I feel fine.’ In the past I felt the symptoms of relapse before I saw the signs.

[I am hesitant to give you too much information, I don’t want to gross you out. Let me just explain in case you don’t know, that in diagnosing a medical condition there are ‘signs’ and there are ‘symptoms.’ Signs are those things that can be objectively observed by your doctor, and/or measured, like blood pressure, CAT scan film or lab reports. Symptoms are those abnormalities subjectively reported by the patient, like nausea or pain. Sadly in our Western culture signs are regarded more highly as “hard evidence.” Symptoms without signs can delegate a person to the “it’s all in your head” category, a special circle of hell many of us know too well.]

Usually I feel the symptom of pain before I see the sign of my kidneys releasing protein, the hallmark of nephrotic syndrome. This time was different. I saw the sign but chose not to believe it. Something else was causing the foamy urine. Soap in the toilet water, for instance. We tell ourselves all kinds of nonsense to deny the reality.

After a few days of pretending the signs weren’t there I bit the bullet and tested my urine which is easy to do with special litmus papers that measure the amount of protein in a sample. First I had to find my supply of uri strips, way in the back of a bathroom cabinet, dust off the bottle and test.

Positive.

DAMN!

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A Magical Five Minute Meditation from Toni Bernhard



A few weeks ago the old kidney problem I’ve dealt with since my youth came back. This relapse of  nephrotic syndrome after a blessedly long run of relative health, threw me for a loop, I admit.

Among other things, which I’ll write about soon, I felt an awful restless agitation brought on by a combination of the sudden appearance of  illness that sharply pulled up the reins on my activities plus high doses of the medication, prednisone, that I have to take to kick my kidneys back into healthy function.

A lot of people with chronic illness can relate to this crazy-making feeling. Our mind races, nags at us to do all those little and big chores that need to get done. Yet without the energy to back it up, worse if you are in pain which is terribly draining, it’s like being tied down to a post and whipped to get going at the same time.

Author, Toni Bernhard knows this feeling well. She wrote, How To Be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers. Toni’s article posted on her Psychology Today blog, Turning Straw Into Gold, came at just the right time for me. She writes:

“…as I sat in the lounge chair in my backyard, I was suddenly overcome with restlessness. But I didn’t have the option to “get outta here.” As most readers know, I’m mostly housebound due to chronic illness.

As the restlessness turned to irritation, I thought maybe I should try to meditate, but the setting wasn’t right. So I made up a practice on the spot. It worked so well that I’ve been doing it every day. I offer it to you as five minutes of mindfulness magic.”

For days I had been working on resurrecting my meditation practice, knowing that while coping with my relapse my mind, and general health, really needed it. My practice has always been loosy goosy, and in the busy-ness of my life recently I had allowed even that to lapse like yesterday’s diet. So when I saw Toni’s tweet on Twitter: “Do you have five minutes? Five Minutes of Mindfulness Magic | Psychology Today #mindfulness #Dharma #Buddhism” I eagerly took a look and I wasn’t disappointed.

Here is an exquisitely simple guide to settling our spirit anywhere, anytime. No need to wait for a block of 30 minutes, no need to wait until you are in your special sitting place. A deeper, longer daily practice is still my goal, but I needed this helpful, do it now, it’s just five minutes invitation, to get me started. Thank you, Toni!

To learn more click here: Five Minutes of Mindfulness Magic

Photo courtesy Sofia Francesca Photography

10 Ways to Bring Christmas Cheer to Your Loved One In the Hospital for the Holidays



324281561_c801fdbcf9 Disease and trauma do not take a holiday. Many of us have loved ones in the hospital for all kinds of reasons. We want to do what we can for our children, brothers, sisters, friends, who find themselves in strange surroundings during this supposedly most  joyous of times.

Fifteen years ago, a few weeks before Christmas, I was suddenly admitted to Women and Children’s Hospital.

I was five months pregnant with my daughter and I was very sick. With my history of kidney disease and scleroderma, I chose a maternal-fetus specialist to be my OB-GYN. Trained in situations like mine, where the mother has chronic illness which makes the pregnancy high risk, I had every faith in Dr. Margaret McDonnell. My first pregnancy had gone off without so much as a cold. This time Margaret said,

“You have to be ready for this baby to come early.”

What was she saying? “Margaret, you’re scaring me.”

“We’ll keep you in the hospital. The longer the baby stays in you the better.”

The doctors didn’t know what was causing the problem. It could be my kidneys shutting down or preeclampsia, a condition that is dangerous if not treated. If caught in time it clears up once the baby is born.

All we could do was wait and hope our baby would just settle down and stay put.

I was ordered to complete bed rest. After over two weeks of not being allowed to get up even to pee, I was scared, depressed and a little crazy. My two year old son wasn’t allowed on the floor. I missed him with a pain I can’t describe. And it was Christmas time.

Friends and family helped my husband and I keep it together. My daughter was born a few days after Christmas. She was one pound thirteen ounces and was able to breathe on her own. The doctors assured us she was strong.

Two days later my symptoms cleared up and I was discharged. My daughter came home three months later.

Hospitals and the medical staff are sensitive to the holidays but they have jobs to do and shouldn’t be expected to provide holiday cheer. Family and friends can make a huge difference, however, so I collected ten suggestions for those of you who may have a loved one in the hospital this season:

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Mom with Chronic Illness Wants to Do The Right Thing



A few weeks ago I received an email from a mom with chronic illness looking for some advice. Our email conversation made me so happy, with her permission, I share it with you here:

Dear Dr. Aletta

I have loved reading the different articles on the web site and thanks for being my friend on FB. I do have a question that has been bothering me for weeks now and I have not read anything about this and I am too embarrassed to talk to anyone about this difficult decision. Our son is one of the star athletes on the football field. We live in a very small town-close knit community. I was [diagnosed] with neurosarcoidosis when he was 12… He is now 18 and this is his Senior year of High School. This Thursday Night…Senior Boys escort their Mothers on to the football field and get introduced to the crowd. I have missed many games because of the illness and I have gone from being in a wheelchair to walking with a walker. My problem is this: I am so afraid that my son is embarrassed. I can walk with my walker but I do stumble much of the time… Should I just bow out on Thursday Night and tell him I am just not up for it or do I go and hope everything turns out ok?

Torn Up about this…

~~***~~

Dear Torn Up Mom,

Thank you for your question. I do have a few suggestions, I hope they are helpful. If you have the strength, if it won’t make you very ill, I hope you can participate. I am concerned that if you bow out you would feel even worse than if you took part in the tradition. What if you asked to be one of the first to go on the field, allow yourself to be taken out in the wheelchair (your son helping you, of course), then once out there, stand up leaning on your son’s arm. If you believe this is something you can do, talk with your son about the idea. I have an 18 year old son, too, and I believe if I were in the same position I would share my dilemma with him. At that age they are developed enough to feel empathy. Maybe you are underestimating your son. Maybe instead of being embarrassed, he would be proud.

Warmest wishes always, Dr. Aletta

~~***~~

Dear Dr. Aletta

Thank you so much for your response. I will take your suggestions to heart and Z— and I will have a talk tonight. Everyone tells me that he is not ashamed of me being in the shape I am in these days. I have some very dear friends at the high school and they have been emailing me to see if I need anything special for Thursday night. I know what I need to do.

Thanks again for taking the time to give me your input. You don’t know what it means to me.

A few days later…

Thank you so much for steering me in the right direction…I took your advice and I did attend Senior Night for the football team. I was really worried and nervous and I took your advice and suggestions and everything worked out perfectly.

Thank you again for helping this Mom make the right decision.

~~***~~

Can you relate to this Mom’s story? Tell us your’s in the comments!!!

Being a Guest Blogger is So Cool!



Yay! I was asked to be a guest blogger on this website, I.G. Living and my first post was published today! It’s an oldie but a goody, Five Tips for Living Well with Chronic Illness. I.G. stands for immune globulin, a promising area of medical research for the treatment of autoimmune diseases. Scleroderma, the disease I was diagnosed with over twenty years ago now, is one of those that might be helped with this science. I am honored to be asked to contribute to their blog which helps support thousands of people with information, support and guidance. More of my articles dealing with living with chronic illness will be published on I.G. Living in the next weeks. Enjoy and please comment!

Chronic Illness Before the Diagnosis: Your Not Crazy. Trust Yourself.



Courtesy Sofia Francesca Photography©

I read somewhere that properly diagnosing chronic illness can take from two to three years. Many of you wait even longer.

In the meantime, while the doctors scratch their heads, we’re expected to be happy we’re alive. And that’s if they don’t write us off with “It’s psychological.”

It took a year and three doctors before I was diagnosed with scleroderma. Just remembering what I went through during that year-from-hell gets my blood boiling and I was one of the lucky ones.

If you are experiencing symptoms but don’t have a diagnosis yet, here are some tips that I hope will help you get through this trying time a little easier.

Trust yourself. You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right. ALL OF THEM.

Maybe I see a skewed sample of the general population but I don’t think so. Medicine is slowly catching up to the experience of hundreds of thousands of people reporting symptoms for which there is no hard, “objective” test. They should be believed. Even the Veterans’ Administration has come to recognize that when a combat veteran says he is suffering from PTSD, he is not faking. We do not want to be sick and it just pours salt in the wound when anyone suggests we are making this stuff up.

Learn who you can confide in and who it’s best not to. Your loved ones may be among those who have doubts, especially if you don’t look sick. They may not understand that there is a huge amount the science side of medicine needs time to deal with or just doesn’t know.

Many chronic illnesses develop slowly and the symptoms overlap. There are few ‘hard, objective’ diagnostic tests that rule-out or rule-in a particular disease. Your family and friends may be frustrated and confused. Before your struggle, they thought doctors knew everything and, like Gregory House, could have you diagnosed and treated within the time it takes to microwave the popcorn. When given a choice of trusting the doctor or trusting you, you might lose out.

For those who are open to it, you can try educating them to this process. To those who aren’t, avoid them like kryptonite. They will suck away your precious energy.

But I’m getting side-tracked. My point is, that even when those around you are questioning the reality of your symptoms, trust yourself first.

If anyone, friend, foe or doctor, tells you any variation of “It’s all in your head,” please, resist the urge to spit in their eye. On the other hand, I’m telling you, getting angry and defensive on your behalf is better than doubting yourself and becoming depressed. Just regulate your anger so that you don’t alienate the very people you need. Do that by being direct, controlled and civil when you say, “That makes me angry.” Then let it go.

When your doctor tells you to go to a psychotherapist, don’t throw the baby out with the bathwater. Some doctors will refer you to a psychologist because they truly believe it would benefit you to talk to a professional who can help you cope with the emotional side of things as they try to figure out what is going on medically. That is great. Take the referral and try it out. A good therapist will totally get what you are going through, the fear and anger, on top of more fear and anger. A good therapist will give you a safe place to sort it all out and practical guidance as to what to do with it all.

On the other hand, many doctors will tell you to see a shrink because they don’t know what else to do with you. It could be your anxiety, depression and anger makes them uncomfortable. Sad but true. Don’t let that devalue the benefit of a good therapist. Take the referral or find your own. You may discover it is actually a relief to talk to a good therapist and there could be other benefits.

Deb wrote to me about her experience after reading my article, Five Rules for Living With Chronic Illness. Before she was diagnosed with neurocardiogenic syncope she was

“in and out of the emergency room for two years and saw scores of “ologists” – cardiologists, neurologists, endocrinologists, internal medicine, you name it. But because I never completely lost consciousness (I could always hear what was going on) the common theory was that my condition was psychosomatic. So I saw a psychologist. He saw one of my spells during one of our sessions and told me “it definitely is NOT psychosomatic, it’s physical.””

It took two more frustrating years before Deb was accurately diagnosed but at least she had validation that her symptoms were real.

Hint to doctors: Listen to Deb, who writes, 

What doctors need to realize is that we, as patients, don’t expect them to know everything.  We do expect them to listen and treat us like intelligent, rational people.  Maybe some of us are square and don’t fit into the round holes most doctors see everyday; but that doesn’t mean our symptoms aren’t real.”

Finally, as hard as it is, nurture yourself. As a chronic illness patient you will be telling your story to a million people, a million times. You will visit a gaggle of doctors, nurses, lab technicians, receptionists, offices and hospitals. You will fill out reams of forms, give up quarts of blood and pee, be poked and prodded, dress and undress a thousand times. It is exhausting. Stop long enough to replenish yourself body and soul. If you pray, pray. If you meditate, meditate. Laugh! Give yourself a pity party for twenty minutes (no longer),complete with chocolate! If you have just one person, place or thing that eases you back to your peaceful place, be grateful and spend time with them.

Above all, listen to your gut.


Chronic Illness: If Therapy Helps, Does That Make It Psychosomatic?



NO!

Don’t let anyone tell you otherwise.

As a newly minted PhD I had the privilege of working on a three year National Institutes of Health (NIH) grant at Mt Sinai Medical Center that studied the effect of Cognitive Behavioral Therapy (CBT) on post-stroke depression. Our results supported our hypothesis, that CBT helped alleviate depression in people who were recovering from stroke. As a result the people who received CBT (as opposed to anti-depressant medication or a placebo) did better in their cognitive (perception, memory, language) and physical rehabilitation treatments. Therapy helped. 

Did that mean the stroke was psychosomatic? Of course not! No one would question that the stroke was a real physical/medical event.

Why do people think that studies in support of the notion that anyone with Chronic Fatigue Syndrome (CFS) does better if they receive CBT also support the idea that it must be psychosomatic?

Controversy continues to swirl around CFS and it is so frustrating for anyone suffering from it, studying it or treating it. A report by National Public Radio (NPR) this morning is a good example. Here is Cracking the Conundrum of Chronic Fatigue Syndrome in its entirety with my comments in bold.

Nearly three decades have passed since the debate began about a series of symptoms that have come to be known as chronic fatigue syndrome. It’s cause is still unknown, but over the years, researchers have identified various brain, immune system and energy metabolism irregularities involved. Some patients describe the syndrome as feeling like an “unrelenting, unremitting flu.”

Doctors say some treatments can help.

This is good news, right?

Arthur Barsky, a psychiatrist at Brigham and Women’s Hospital in Boston and a professor at Harvard Medical School, says patients need to change how they experience symptoms — typically pain, insomnia and anxiety. When patients adopt a more positive attitude, Barsky points out, it often translates into greater confidence and more energy.

OMG, this is said in such a simplistic manner! I admit I haven’t read the study so I don’t know if it’s the study or the reporting that is to blame. Did the reporter not read what they wrote in the paragraph above? “an unrelenting, unremitting flu” sounds like a lot more than “pain, insomnia and anxiety.” Plus I object to the notion that “a more positive attitude” is what is needed. The best thing I can say is maybe Dr. Barsky is being quoted out of context.

A study published this year in The Lancet found that a form of talk therapy, as well as exercise, offered relief for some patients. Researchers from the United Kingdom looked at cognitive behavior therapy, or CBT.

In the study, over 600 patients with chronic fatigue syndrome were assigned to different treatments. All of them received medical care for symptoms like pain, insomnia or anxiety.

These are CFS patients? And yet nothing is said about energy levels.

One group got counseled about how to pace activities. Another took part in an exercise program. And a third received the cognitive behavioral talk therapy. The therapy and the exercise group improved the most, reporting less fatigue, insomnia and anxiety.

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