Positive Steps which Help to Lessen Depression

At the time my depression returned during graduate school, I was also extremely stressed while maintaining a schedule of 2 part-time on-campus library jobs, 2 freelance symphony jobs which rehearsed and performed on the weekends at a location over two hours away from campus, and the normal required doctoral coursework. My life was more than booked solid. So, I decided to take advantage of the counseling services available at the Student Health Center.

One of the suggestions which the counselor had (she happened to be a student herself working towards a Master’s in Social Work) included doing something nice for myself, such as pampering with a warm bath and body lotion. Another suggestion was to find more time for myself in the schedule....a schedule which I had planned precisely down to 15-minute time blocks. Neither of these ideas seemed to be practical nor appropriate for me at the time. However now as I look back, they seem to be good ideas in general.

Below is a list of Positive Steps (as presented by the Multiple Sclerosis Association of America) which can be taken immediately to help lift one’s mood:

1. Exercise. Exercise is proven to produce an increase in chemicals such as endorphins, which can make us feel less depressed – and can help to lessen fatigue as well. Exercises are available for individuals of all ability levels, and patients should discuss an appropriate exercise program with their doctor. (Specific exercise should only be done with a physician’s approval.)

Read this post in its entirety:

Positive Steps to Take When You are Stressed and Depressed

RA and Lupus

Is there an association between rheumatoid arthritis and systemic lupus erythematosus (lupus)? Can someone have both diseases or must he or she be diagnosed with only one? What are the challenges in addressing these questions and more?

From a recent article published in the journal Arthritis Research & Therapy, the average RA patient has 1.6 comorbidities and that number increases with the patient's age. There is increasing interest in the field of comorbidity (the existence of more than one disease in a person, usually independently of one another) and rheumatic diseases.

Incidence of Co-morbidity of RA and Lupus?

The Lupus Foundation of America states that the majority of people with lupus have lupus alone. However, between 5 and 30 percent of people with lupus report having overlap symptoms -- symptoms of more than one disease. The likelihood of a person with lupus also having an overlap disease is 15 percent, distributed as follows: Rheumatoid Arthritis (1%), Polymyositis-Dermatomyositis (2%), Mixed Connective Tissue Disease (3%), Scleroderma (4%), and Sjogren's syndrome (5%). There are at least 1.5 million Americans living with lupus, thus statistically approximately 15,000 may have both Lupus and RA.

Read this post in its entirety:

Can I have Rheumatoid Arthritis and Lupus?

Treatments for Depression in Multiple Sclerosis

Within this series of posts exploring topics related to Mental Health and Emotions, we have discussed mood swings, medication side-effects, stress, depression symptoms and depression causes. Now let’s talk about treatments for depression in multiple sclerosis.

Symptoms of depression are not similar to symptoms of an MS relapse, unfortunately, where if you wait long enough the relapse will subside given you have a relapsing form of the disease. Depression will often get worse over time if not addressed.

Fortunately, depression is very treatable. Taking a prescribed medication AND participating in psychological counseling appear to be the most effective duel approach in addressing depression. Taking advantage of both approaches together is more effective than either treatment alone - medication or therapy.

Read this post in its entirety:

Mental Health and MS: Depression Treatments

Multiple Sclerosis and Depression: Common Causes

Six years ago today I had an odd dream. It was of my grandmother coming into my bedroom to talk. I mumbled something (in the dream) about wanting to sleep a little longer and she laughed, saying that it was fine.

This was a Monday morning after Hurricane Isabel swept through the East Coast and Washington DC area. I was home alone when the power went out on the previous Friday morning which would ruin the mound of food I had just stocked our new freezer with. The power did not return until late Sunday evening.

I received a phone call later in the morning on Monday. My grandmother had passed away that morning. This turned out to be only the 2nd of too many devastating events which occurred during the most hellacious week I’ve ever experienced before or since. Hurricane. Death. Funeral (in Oklahoma). Family Violence. Police. Hospital. Panic Attacks (mine). Xanax. Delayed, then Cancelled Flights. Stuck in St.Louis. Missed Flights leaving DC for Indiana. Doctoral Oral Exams on following Monday.

After recovering, slightly, from all of the above, I knew I NEEDED HELP!!! As a result of the hellacious week, I had many reasons to be depressed. I found a therapist with whom I would develop a great working relationship, which certainly helped years later when I was being diagnosed with MS.

Common Causes of Depression

1. Disease Response

Experiencing a period of depression and uncertainty following the diagnosis of MS is not uncommon. It takes time to adjust to a “new reality” and grieve the loss of what was, or the loss of a planned future. I have observed that the first year post-diagnosis seems to be the most difficult one emotionally. However, most patients do eventually adjust to altered circumstances, even the ones which come from new disabilities, loss of employment or loss of relationships.

To be honest, I must admit that I’ve experienced the same post-diagnosis depression during each exacerbation. All of the uncertainties and fears come rushing back with each gain of unstable ground. If staying in a place of “emotion-centered” thoughts and avoiding constructive problem-solving skills, I become depressed more easily during and following a relapse. It takes time to come back around to acceptance.

Read this post in its entirety:

Mental Health and MS: Depression Causes

Multiple Sclerosis and Depression: Symptoms

Dreams are often a good indicator of where our needs in life are. The brain has an amazing ability to work through problems and issues while we sleep which is where the phrase - sleep on it - comes from. Sometimes the mind needs to work through our emotions while we sleep which is when my most vivid dreams seem to emerge.

I love the water. When swimming, I feel as though time stands still. The water passing over my shoulders as I lie on my back and kick a lap or two feels great. The gentle stretch overhead in a backstroke is rejuvenating. Going without contacts and having my ears underwater takes away spatial references enough so that I’m in my own world.

However, I have a dream which comes to visit occasionally. There is nothing in this dream besides me being underwater and pulled down into the depths of the ocean. Rays of light are shining through the surface, but they seem to be pulled farther and farther away. At first I struggle to rise, but then it doesn’t seem to matter. I lose all desire to reach the surface, even for a breath of fresh air.

This dream appears when I need a gentle message to examine my mood and mental health. It is the point at which I no longer pay attention to the dream that I’m in trouble, a sign of a major depression episode that has engulfed me leaving no desire to climb out of it. I’ve been in this place more times than I care to count. Never suicidal, mind you; just really in a very dark place.

Read this post in its entirety:

Mental Health and MS: Depression Symptoms

Mental Health and Multiple Sclerosis

Last week I wrote a post - Mood Swings, Medication, and Multiple Sclerosis - in which I shared a slice of my mental health reality. For me, the experience of mood swings being more prevalent during certain times of the month has become much more common since finally being diagnosed with MS and prescribed Copaxone. Whether the cause of the mood swings is MS itself, a side-effect to medication, or simply hormonal changes, the experience remains as unpleasant.

The passionate response to the post was humbling for me. What was intended to be simply light-hearted, spoke the truth for several individuals who saw themselves in the description of my personal experience. Thanks so much for sharing part of your own story with me. Let’s extend our conversation and discuss the ways in which mood can be affected by multiple sclerosis.

[...]

As you can probably guess, I find this topic to be highly fascinating and increasingly more relevant to my MS experience. I must admit that I experience clinical depression and have for many years. Within that experience, I also have major depressive episodes and have been fighting not to sink into one in recent weeks.

So I’m selfishly interested in examining this topic for the benefit of our community at MS Central and for myself. For the next few weeks, I will discuss depression, mental health, stress, medications (including side-effects), and multiple sclerosis. We will also explore ways to manage each of these influences and maintain our quality of life.

What topics are of most interest to you in discussing Mental Health and Quality of Life? I have my ideas of where to go with this, but it’d be nice for you to also guide the conversation.

Read this post in its entirety:

Mental Health, Mood, and MS: A Fresh Look

PMS, Volatile Emotions, and MS

This post is for the women living with MS and the caregivers who live with the women living with MS. (are you with me so far?) Today, I’d like to talk about premenstrual syndrome, emotional volatility, and multiple sclerosis. Men, you may want to stick around for this discussion; it just might affect you too.

There are several small studies which have explored the relationship between the menstrual cycle and pseudoexacerbations in MS. One such study investigated the role of body temperature and use of aspirin as prevention, published by Dr. Dean Wingerchuk and Dr. Moses Rodriguez in the Archives of Neurology 2006;63:1005-1008. Another article, Understanding Fluctuations of Multiple Sclerosis Across the Menstrual Cycle by Dr. Maria Houtchens, Ninel Gregori, and Dr. John Rose, was published by the Consortium of Multiple Sclerosis Centers.

Anecdotally, there are a number of MS bloggers who discuss this very phenomenon of increased symptoms in their monthly lives.

Before developing MS, I never experienced severe premenstrual symptoms nor the related emotional swings. Honestly, I didn’t. (Please don’t throw any tomatoes at me.) Sure, I had painful cramping that would keep me in bed and a heavy flow which would last a full week. But really it was only the intense craving for chocolate and insatiable hunger which clued me in what time of the month it was, if I had forgotten.

Read this post in its entirety:

Mood Swings, Medication, and Multiple Sclerosis

MS and Diet: Best Bet and MS Recovery

Continuing our discussion of MS and Diet, today’s topic surrounds the Best Bet Diet and the MS Recovery Diet. Each feature the elimination of foods which may cause allergic reactions and adhering to a more Paleolithic Diet.

DIRECT-MS and Best Bet Diet
DIRECT-MS, short for DIet REsearch into the Cause and Treatment of Multiple Sclerosis, is a charity which was formed in 1998 by families affected by MS. After his son developed MS in 1995, Ashton Embry, Ph.D. delved into the scientific literature to find the most likely cause of MS and to develop an effective treatment for his son, the result being the Best Bet Diet.

DIRECT-MS has a large collection of Journal Articles where one could spend countless hours reading up on research and offers a downloadable Cookbook.

Best Bet Diet Nutritional Protocol:
1. Eat fruits and vegetables for carbohydrates and micro-nutrients
2. Eat fish and skinless breast of chicken and turkey, for protein
3. Eat extra virgin olive oil for fats
4. Avoid all dairy, grains (except rice), legumes
5. Avoid all allergenic foods, which are identified by skin and ELISA tests
6. Avoid all red meat and margarine
7. Take a daily regime of supplements (see full post for more information)


Read this post in its entirety:

MS and Diet: Best Bet Diet and MS Recovery Diet

Gratitude Friday and Health Care Questions

There are always at least two ways to look at any situation. After a really tough summer with my MS, I am thankful that I'm ready to get back to work, ie. focusing on my health and wellbeing. I will be starting back to physical therapy soon and am doubly thankful that my insurance does pay for that treatment.

I like that photo above - a horse and zebra mix. A dichotomy in one creature.

Life is full of dichotomies which coexist peacefully. Today, I'd like to do something different. I'd like to ask you to answer a few questions. The result of which will show the differing opinions and experiences of the members of our community.

Here are the questions:

1. How many doctors do you have and how often do you see each one in a year?

2. Do you have health insurance? If so, how have you obtained it? ie. through your employer, through a spouse's employer, on your own independently, through retirement benefits or through Medicare or Medicaid?

3. How much does your coverage cost? How much are the premiums? What is your deductible? How much are your copays and/or coinsurance? Do you have prescription coverage?

4. What are the top three aspects of your health care and health insurance which you APPRECIATE the most?

5. What are the top three aspects of your health care and health insurance which you DISLIKE the most?

6. What are your greatest CONCERNS when it comes to changes in how health care is provided (ie. delivered, financed, regulated)?

7. What are your greatest HOPES when it comes to changes in how health care is provided?

Bonus questions:

Do you know how many legislative health reform proposals have been introduced in Congress this session (in the US only)? Have you read any of the proposals? If you were "ruler of the world" how would you change things?

Please keep the conversation civil. No talk of "death panels" or "angry mobs."

I thank you in advance for you responses.

Please go to HealthCentral to comment (even if anonymously):

Gratitude Friday and Health Care

MS and Diet: Swank, McDougall, Jelinek

Come join the conversation...

In last week’s post, MS and Diet: Should you eat low-fat to treat your MS?, we discussed the news that a clinical trial will be conducted to determine the impact of a low-fat diet on MS progression, disability, and quality of life. Below is an introduction to the three most popular diets which take the low-fat approach and each of their corresponding websites.

Read this post in its entirety:

MS and Diet: Swank Diet, McDougall Program, and Taking Control of Multiple Sclerosis

MS and Diet: Should you eat low-fat to treat your MS?

Bring up the topic of complementary and alternative treatments for multiple sclerosis and you just might start a controversy. However, what’s so controversial about maintaining a low-fat diet? Sounds like a good dietary recommendation to me.

One approach to managing MS is through the use of diet, in addition to, or in place of traditional treatments. So why aren’t we all on a strict regimen and measuring our dietary intake against a widely publicized recommendation?

A simple reason may be that there is more than one “MS Diet.” Another reason may be that there is little clinical research into the the impact of diet on MS progression and symptoms. But soon that will change.

Researchers at Oregon Health & Science University (OHSU) are launching a first-of-its-kind research study aimed at determining whether a low fat diet is beneficial to patients with multiple sclerosis. In addition to tracking each patient's MS symptoms and examinations by a neurologist, researchers will try to determine the physical impacts of a low fat diet on the brain through the use of MRI.

Read this post in its entirety:

MS and Diet: Should you eat low-fat to treat your MS?

Educate, Encourage, Empower

Recently, I was invited to travel to HealthCentral’s New York office to participate in an on-camera interview as part of Johnson & Johnson’s global video campaign. Joining me were three other Patient Experts from different HealthCentral sites. I can't recall verbatim everything we talked about, but here are some questions and thoughts I had discussed that I'd like to share with you:

1. How important is it for patients and/or caregivers to become active participants in their health care?

It is imperative that we, as patients, take an active role in our own health care, which includes educating ourselves, working with our medical providers in making appropriate decisions, and following through with treatment choices. After all, it is your own body, mind, and spirit that is at stake as well as your current and future health.

2. How has the Internet served to empower patients when it comes to managing their health?

The power of the internet lies in the immediate access to information that provides an individual with a wide variety of opinions and facts when it comes to managing their health or illness. Whether from the National Institutes of Health, the Arthritis Foundation, the Johns Hopkins Arthritis Center, the National Multiple Sclerosis Society, or patient blogs and online health communities, reliable information and personal support ultimately empower patients in making their own choices.

3. What is it that motivates you to join the conversation with online health seekers?

Please read this post in its entirety and leave your own thoughts:

The Power of the Patient: Educate, Encourage, Empower

Celebrating One Year at HealthCentral

Just over a year ago I was recruited to write at HealthCentral and I have enjoyed it very much. For a peek at those early days, you can find my first posts here:

• "Oh What a Beautiful Morning, Oh What a Beautiful Day"
• "I had to learn to reconstruct my life" - Jacqueline Du Pre

The year has certainly flown by quickly as I’ve enjoyed sharing bits of my life with you. To celebrate our community and to highlight some of my personally favorite, and most useful, posts from the past year, I’ve incorporated links to the best of the best in the following piece. Enjoy.

Rest this post in its entirety:

Happy Anniversary!!

"We Are All Patients," says Kim McAlister of Emergiblog

Continued from Part One, more discussion, prepared thoughts, and reactions from the bloggers in attendance at the event, "Putting Patients First" as hosted by Dr. Val, CEO of Better Health, LLC.

Dr. Wes posted his prepared opening comments of which these statements make me personally want to cheer - “The honest truth is, if I could help the uninsured, and unemployed and chronically ill while preserving my relationship with you – I would. If I could solve these problems while preserving my love for medicine – and the devotion of my colleagues, I would. Fortunately, I believe we can."

“But we can’t do that and continue to fund the gravy train. And that gravy train is the multi-billion dollar health insurance industry with executives who made over $24M annually in 2007, the $800B pharmaceutical industry with executive compensations of over 25 million dollars the same year, the over $24 billion spent in one year in our country on new hospital construction, the nearly half a billion dollars in political campaign contributions from health care special interests a single year (2008), and the 55-80% increase in malpractice insurance premiums that your doctors have paid over the past 5 years.”

...A final member of the Twitter Gallery was Kerri Morrone Sparling of "Six Until Me" whose round-up goes directly to the heart of the discussion: Government Health Care. Her readers provide excellent commentary on the issue, especially those who have lived in the US and elsewhere.

Kim of "Emergiblog", never shy to say she is definitely NOT for a single-player plan run by the government, ended her summary making an excellent point - “I’ll say one thing: no matter what we believe, why we believe it or what our role is in the health care system, it is a conversation rife with strong opinions and passionate debate. And, in the end, because we are all patients in one form or another at some point in our lives, the conversation is about us. So, when you hear the phrase ‘putting patients first,’ think of it as ‘putting me first.’ That may help you get a foothold in the morass of information that is the health care debate. It worked for me.”

Finally, from one Canadian I respect comes - “Yes America! I Like My Healthcare.”

Please read and consider answering the questions posed at the end of this article regarding your health care.

Read this post in its entirety:

Health Care Reform: Putting Patients First, Part Two

"Ultimately Not About Health Care" says Congressman Paul Ryan

Health care reform is divisive dinner conversation here in the Nation’s Capitol. Ok, maybe not at everyone’s dinner table, but it is a very hot topic lately. On July 17, 2009, I attended an event hosted by Dr. Val Jones, CEO of Better Health, LLC, titled - “Healthcare Reform: Putting Patients First” - at the National Press Club in Washington, D.C.

As was noted in the larger medical blogosphere, there were no patient bloggers invited to participate on the medblogger panels. In response to the minor uproar, Dr. Val commented, “The spirit of the conference is about expressing the need to preserve the patients’ right to choose (along with their providers’ advice and input) the best path for their care. It was never my intention to exclude patients from the conference in any way – patients and physicians/nurses are each others best allies, and we need to stick together!”

Ok, with that out of the way, let’s talk about what was discussed during the conference.

The keynote speaker was Congressman Paul Ryan (R-Wisconsin) who started with - “This event is a landmark in how we get discussion and debate going in the 21st century. We are communicating with the grass roots, with medical bloggers here in this room and across the country.

“Let me tell you this: I don’t want government interfering in the relationship between doctors and patients…and I don’t want insurance companies interfering either! I want a vibrant health care market that lets patients choose the health care options that are right for them and their loved ones. I want a free market democracy that puts patients first. We can have this, and I’ll say something more about that in a minute.”

The majority of Ryan’s speech (transcript available) was dedicated to demonizing the role of government in healthcare reform solutions and the Democratic bill recently introduced in the House and supported by President Obama. Ryan finally said this out loud, “The fact is, this is ultimately not about health care but about promoting an ideological objective.”

“Not About Health Care” - That’s a frightening admission, but spoken from someone who has access to excellent coverage and care. For more on Ryan’s speech, read Duncan Cross’ commentary.

Read this post in its entirety:

Healthcare Reform: Putting Patients First, Part One

"Let's talk about sex, baby"

“Let's talk about sex, baby
Let's talk about you and me
Let's talk about all the good things
And the bad things that may be
Let's talk about sex” - Lyrics by Salt ‘n’ Pepa

So we’ve been talking about sex, intimacy, sexual dysfunction, and multiple sclerosis at MS HealthCentral. For such a challenging topic, the response has been very positive. I highly recommend that you start with the first post, read through the series, and add your comments and suggestions. Thanks in advance.

In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.

For a discussion of sex toys and tools, read this post in its entirety:

Multiple Sclerosis: Sex Toys, Tips, and Tools

Sexuality, Intimacy, and MS

The physical changes experienced by people who have multiple sclerosis can alter their view of themselves as sexual beings, as well as their perception of the way others view them. The psychological and cultural context in which physical changes occur can adversely affect self-image, mood, sexual and intimate desire, and the ease or difficulty with which persons with MS communicate with their partners.

One of the notions about sexuality that prevails in Western culture is a “goal-oriented” approach to sex. In this approach, the sexual activity is done with the goal of having penile-vaginal intercourse, ultimately leading to orgasm. The sexual behaviors labeled as foreplay, such as erotic conversations, touching, kissing, and genital stimulation, are seen as steps that inevitably lead to intercourse rather than as physically and emotionally satisfying sexual activities in their own right.

This Western view of sexuality leads to spending a great deal of time and energy worrying about the MS-related barriers to intercourse and orgasm (“the goal”) rather than seizing the opportunity to explore physically and emotionally satisfying alternatives to intercourse. The capacity to discover new and fulfilling ways to compensate for sexual limitations requires that couples be able to let go of preconceived notions of what sex should be and focus instead on openly communicating their sexual needs and pleasures without fear of ridicule or embarrassment.

Read this post in its entirety:

Sexuality, Intimacy, and Multiple Sclerosis

The Cost of Chronic Illness

With the ongoing debate on ways to reform health care, I've been thinking about the routine medical care I receive in a typical year. However, living with multiple sclerosis and rheumatoid arthritis, it is not always easy to know if a particular year is going to be "typical" or not. So I examined exactly what health care services I used in one calendar year. Here is what I found:

I saw the rheumatologist three times during the year since I have routine visits scheduled every four months.
Total charge: $433 - insurance adjustment: $202 = $231
Insurance paid: $176
My copayments: $75

I saw the neurologist (or nurse practitioner) five times during the year. In addition to routine visits scheduled every three to four months, I had two extra visits related to a multiple sclerosis relapse.
Total charge: $1,269 - insurance adjustment: $780 = $489
Insurance paid: $354
My copayments: $125

Rest this post in its entirety:

The Annual Cost of My Chronic Illnesses

Helpful Kitchen Tools

With the intent to improve my diet in recent months, I’ve been spending more time in the kitchen. Trust me, I’m no chef, but I can follow a recipe. I even own a Better Homes and Gardens Cookbook.

Even before my rheumatoid arthritis was diagnosed, I had started purchasing things for the kitchen which would prove to be quite useful. These items help when the hands are sore, swollen, and weak, since they require much less effort to hold and use. Even when the hands are feeling strong, they just make things easier to accomplish.

Read this post in its entirety:

Five Kitchen Tools to Make Cooking Easier

More MS-Related Financial Help Available

In my last MS HealthCentral post, I provided a list of places that may be able to help you with financial assistance for your MS medications. But these are not the only costs associated with MS. In addition to pharmaceutical assistance, there are programs available to address other needs as well. The primary organizations which offer assistance specific for MS-related needs include the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America.

Read this post in its entirety:

Financial Assistance for Other MS-Related Needs