Pacing: An Important Tool for Coping with Chronic Illness

How many times have you had a good day only to drive yourself right back to bed by completely overdoing it and tackling everything on your to do list and then some? I can't count the number of times I've done this to myself. One of the great ideas I learned about at The Lemons Center for Behavioral Pain Management is pacing. It's a simple concept, but powerful and often hard to put into practice.

The idea of pacing is to stay within a reasonable range of pain and exertion at any given moment so you don't drive yourself toward a crash. The way The Lemons Center illustrates this is by an idea they refer to as "checking your gauges." Just like when you're driving a car and monitoring the gauges on the dashboard for speed, fuel, oil and other messages the car gives you, pay attention to the messages your body gives you. 

On a scale of 1-10 rate your pain, fatigue and emotional state in that moment (these numbers can change rapidly). If all your numbers are at a 6 or below, keep doing what you're doing, but continue to check your numbers from time to time in case you need to make adjustments. If any of your numbers are a 7, 8 or 9, slow down. Your body is telling you you're overdoing it and you need to address the way you are feeling. Continue to check your gauges as you make adjustments. If any of your numbers are a 10, stop what you are doing and take care of yourself. Don't keep pushing yourself or you're in for even more trouble. Keeping track of your numbers can be helpful in tracking patterns in your pain, fatigue and emotional health and for illustrating your symptoms and their impact for your doctors. Checking your numbers also keeps you honest about how you're actually doing. As sick people we often tend to minimize our symptoms, which doesn't do anything to help how we're feeling.

• 1 - 6  Continue your activities; keep checking your gauges.
• 7-9   Slow down; keep checking your gauges.
• 10    Stop and take care of yourself.

Bottom line: Check your gauges and listen to the information they give you. It's truly as simple as that.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Medication Overuse Headache Article: Education Through a Biased Lens?

Sometimes the possibility of funding-related prejudice in the interpretation of medical research seems eerily noticeable.

A recent article in the Cleveland Clinic Journal of Medicine discusses the issue of Medication Overuse Headache. This is undoubtedly an important issue for doctors and patients to be aware of, but may be somewhat unpopular with drug companies who want to sell as many doses of their migraine treatment medications as possible. As is often the case, a number of pharmaceutical companies, some of which sell triptans, provided financial support for the research institutions that employ the study's authors. It may be a total coincidence, but I had to wonder if this was why the article suggested that patients using butalbital and opioids are more likely to develop Medication Overuse Headache than those who use migraine-specific drugs.

Breaking the Cycle of Medication Overuse Headache

"The authors have disclosed that they have received institutional research support from ATI, GlaxoSmithKline, MAP, and Merck and honoraria and consulting fees for teaching, speaking, consulting, and serving on advisory committees or review panels from GlaxoSmithKline, MAP, Merck, NuPathe, and Zogenix."

The truth is that just about any medication used for treating an acute migraine attack, whether developed specifically for that purpose or not, has the potential to contribute to a patient's risk of developing Medication Overuse Headache. Furthermore, some researchers believe one type of migraine-specific medicine, triptans, is more likely to cause recurrent migraines rather than just recurrent generic headaches.

To learn more about Medication Overuse Headache, visit this link on Teri Robert's website:  Medication Overuse Headache: When the Remedy Backfires.

Sources:
Phenotype-Driven Strategies for Migraine
Medication Overuse Headache: When the Remedy Backfires
Revised Guidelines for Medication Overuse Headache

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Health Carnival Announcements

This week brings us new editions of two great health-related carnivals: Grand Rounds and the Pain Blog Carnival. Check them out when you get a moment!

Grand Rounds: Vol. 6, No. 31 So Ladylike!

Pain Blog Carnival April 2010


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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Migraine Drug Telcagepant to Undergo Another Clinical Safety Study

When results from initial clinical trials indicated that patients taking migraine medication telcagepant had elevated liver enzymes, there was much speculation about how the drug's manufacturer Merck would proceed. When Merck announced the disappointing results in September they said they would confer with the FDA about how to move forward. They recently announced they will put telcagepant through another clinical safety study.

Migraine Patients to Wait for Triptan Alternative

Telcagepant is part of a category of new migraine medications called CGRP receptor antagonists. These medications exploit the discovery that many patients experience a rise in CGRP levels during a migraine attack. These drugs are thought to be safe for people with cardiovascular problems, who cannot safely use triptans such as Imitrex or Relpax for migraine treatment. We'll have to wait and see if the safety issues continue to be a concern.

Related:
News: Telcagepant to be Abandoned by Merck?
Telcagepant & The Future of Migraine Prevention
Possible Genetic Explanation for Migraine
Migraine News Roundup 34


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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Therapy Drop Out: No Graduation Day

I've been mostly honest about my struggles with depression. I mean, I told you all the dirty truth about my personal hygiene challenges and agoraphobia, for goodness sake. But I'm hiding one big depression-related secret: I'm a therapy drop out.

I'd been seeing the same therapist for a couple of years when things started to fizzle out last fall. My appointments became further and further apart, which is a good thing in that I was doing okay, but a bad thing because I do better when I go more regularly. I can see this now. 

Plus, I began to get the feeling the therapist didn't know what to do with me. We'd done a lot of cognitive behavioral therapy, which can be very helpful, but I think I also need a chance to just get things off my chest and force myself to face things I would otherwise ignore. So even though she might have felt she didn't have anything else to offer me, I think just being there as a mirror and a sort of impartial friend who knows me really well would be good for me.

Of course, we're moving in the next few months, so this relationship likely would have ended at that point anyway. I'm not sure what I'll do then. I don't know that I could find anyone in the small town we're moving to who I'd feel comfortable seeing, but I could see someone in a nearby larger town. I'm weighing my options in the meantime. Should I make an appointment with my current therapist and try to put this all on the table? Should I schedule an appointment at the community mental health center and start fresh with someone new? I really don't know what to do, but I don't think I am doing well enough to not see someone on a regular basis. That much is clear.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Tranquilizers for Migraine Prevention in Hard to Treat Patients

For migraineurs who have tried many preventative medications and had no success with them, the remaining options can begin to seem increasingly and depressingly limited. An article on the Neurology Reviews website discusses the rarely-mentioned possibility of using tranquilizers (benzodiazepines) for prevention in hard to treat migraine patients.

A Novel Option for Migraine Prevention?


Benzodiazepines, such as Klonopin, Xanax, Ativan and Valium, are commonly prescribed for treatment of anxiety, panic attacks or insomnia. There have been very few studies of their use for headache prevention. However, there is anecdotal evidence demonstrating their efficacy for certain patients. This makes some sense given the frequency with which migraine patients also experience depression and anxiety. Perhaps the use of a benzodiazepine allows for better control of anxiety, which lowers the trigger threshold in some people.


Unfortunately benzodiazepines are considered highly addictive, which makes some doctors reluctant to prescribe them, especially for routine use. However, for those of us who have been on many preventatives with no results, they may be well worth a try. They can be an inexpensive option and tend to have tolerable side effect profiles. The use of benzodiazepines as migraine preventatives is only recommended for patients who have unsuccessfully tried three other categories of prophylactic medications.


Related Posts:
The Beauty of Not Choosing
Managing Migraine as a Chronic, Progressive Disease

Sources:
Benzodiazepines: Side Effects, Abuse, Alternatives
A Novel Option for Migraine Prevention?
 


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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Impact of Health Reform on Patient Mental Health Needs

The cost of therapy and medication for underinsured people are common barriers keeping people from getting treatment for a mental health problem. Although there are community mental health centers that provide treatment for many people, their resources are stretched far too thin to help everyone who needs treatment on the level someone with a more serious issue may need. One of the most positive changes that will arise out of the recent passage of health care reform legislation is that more people will have access to affordable, effective treatments for their mental health needs.

• More people will be eligible for Medicaid or get financial help purchasing private insurance. The law provides tax credits for some low-income Americans to help them meet the cost of purchasing insurance.

• Cheaper drugs will be made available for people on Medicaid and drugs that have traditionally been excluded from Medicaid coverage will now be eligible for a federal Medicaid match equivalent to what these medications cost the states.

• Prescription drugs for those covered by Medicare (the elderly and disabled) will become more affordable as the donut hole is closed. The donut hole is the gap between the initial drug coverage and catastrophic drug coverage provided by Medicare in which patients are required to pay for their own medications. The law also requires Medicare Part D prescription benefit plans to cover drugs in every category of medication, including mental health prescription drugs, such as antidepressants and antipsychotics.

• This legislation ends the common practice of not selling insurance policies to people with pre-existing conditions. This change will end any disincentive to seek treatment for fear you will be labeled with a diagnosis and denied insurance in the future and will help people get insurance who have already been diagnosed with a mental health condition.

• The legislation extends the Wellstone Domenici Parity and Addiction Equity Act to apply to any plan included in the health insurance exchanges, including all individual and group insurance policies. The Wellstone Domenici Act only applied to group employer insurance plans for employers with more than 50 workers. It did not apply to Medicare, but did apply to Medicare managed care plans. In addition, the Wellstone Domenici Act did not require plans to provide any mental health benefits. Rather it said if a plan provided mental health benefits they had offer the same benefits for mental health as for physical health.

• Insurance providers will be required to provide a minimum basic mental health benefit.

• Individuals with pre-existing conditions will have immediate access to insurance through high-risk pools.

• The new law eliminates annual and lifetime limits on mental health (and physical health) benefits.

• The range of Home and Community Based Services (HCBS) offered to people with disabilities who require long-term care, but do not wish to be institutionalized, will be expanded. States will also be allowed to target these services toward specific groups, such as people with serious mental illnesses.

• National Depression Centers of Excellence will be established and funded with 5 year grants. These institutions are intended to promote increased access to the best interdisciplinary, evidence-based care for people with depression, disseminate research and establish treatment guidelines.

 
Sources:
Details on Expanded Health Coverage as Obama Signs Bill
Mental Health Care in Healthcare Reform
Depression Screening Works
Few US Patients with Major Depression Receive Adequate Treatment 
Understanding the New Federal Parity Law



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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

The Beauty of Not Choosing

One of my favorite ways to make a decision is to avoid making a decision. Admittedly this option lacks the allure of being a rationally-based, well thought out choice, but it doesn't require much effort. None at all, really.

Given that I've tried so many medications and treatments for my chronic migraines with no positive results, my answer to the question of what to try next has been to ignore the situation. Instead I've been treating my attacks and symptoms and focusing on my diabetes. I can control the factors related to my diabetes and the behavioral choices that affect my blood sugar in a readily observable way. This creates enormously powerful motivation to make good choices. Almost nothing I do or don't do seems to make a noticeable difference in my migraine attacks, making it difficult to stay motivated to try.


I'm always reading and looking for new ideas of things to try. It has been a while since I saw anything that sounded remotely promising. However, I remembered that a doctor I had a referral to once suggested it might be a good idea to try lithium as a migraine preventative, especially because my attacks bear some resemblance to cluster headaches. So that is a possibility. I also read that some patients who have not responded to any other preventative medications had good results with using tranquilizers such as Klonopin, Valium or Xanax as preventatives. One of these might be worth a try. I certainly can't see much harm in giving this option a shot.

It's high time I stopped sitting on my hands and waiting for something to change without trying anything different. I'm pleased to have come across some promising ideas, and I hope my doctors will be on board with trying some of them.


Sources:
Lithium in Migraine & Cluster Headache: A Review
A Novel Option for Migraine Prevention?

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Migraineurs Find it Difficult to Tune Out Visual Stimuli

According to research published in the April edition of the journal Investigative Ophthalmology & Visual Science, it is harder for migraineurs to ignore visual stimuli than it is for people who do not experience migraines. Even when they are not experiencing migraine attacks, migraine sufferers find it harder than non-migraineurs to tune out visual noise. The study's lead researcher said most people can tune out less important stimuli in order to focus on items of particular interest. For some reason this is harder for migraineurs.

"Migraineurs may be at a disadvantage when searching for details, especially in cluttered environments."

Some researchers believe the nerve cells in the brains of migraineurs are especially excitable. When they become stimulated by exposure to certain triggers, a migraine attack develops. This research seems to provide a logical explanation for why computer screens, televisions, strobe lights and other flickering, dramatic visuals are migraine triggers for many people. This would also explain why it is so particularly soothing to retreat to a dark room when you are experiencing a migraine attack.

Sources:
Tuning Out Visual Stimuli is Harder for Migraine Sufferers

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Migraine Poetry Contest Winners Announced

The winners of the 2010 Putting Our Heads Together Migraine Poetry Contest were announced on Monday. The contest generated some extremely creative, powerful entries. Take a moment to read through all the submissions when you get a chance.

Migraine Poetry Contest Winners

My favorite entries were "A Beautiful Foreboding" and "The Invisible Illness." Which poems were your favorites?


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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

April 2010 Headache Blog Carnival Posted at My Migraine Connection

The April 2010 edition of the Headache & Migraine Disease Blog Carnival is up at My Migraine Connection.

The April theme was "Migraines in Literature," though most of the submissions, including mine, were on other migraine-related topics. A very special thanks to Teri Robert for hosting this edition.

April Headache Blog Carnival: Migraines in Literature

The May carnival on the theme of "When it seems too good to be true..." Submissions are due by the end of the day on Friday, May 7 and the carnival will be posted here at Somebody Heal Me on Monday, May 10.

For more information about the carnival visit this link: Headache & Migraine Blog Carnival. I'm always looking for people willing to host the carnival or who have ideas for possible future themes, so hit me up if you want to pitch in. You may comment here or e-mail me at SOMEBODYHEALME at DIANALEE dot NET.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Last Call: April 2010 Headache Blog Carnival

Submissions for the April 2010 Headache & Migraine Disease Blog Carnival are due by midnight (the end of the day) today, Friday, April 9. Posts may be submitted through the form on the carnival website, to me by e-mail or directly to this month's host Teri Robert at this link: April Migraine Blog Carnival: Submit Now.

The theme is "Migraines in Literature."

The April carnival will be posted on Monday, April 12 at My Migraine Connection.

For more information about the carnival visit this link: Headache & Migraine Blog Carnival.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Headache Action Alert: Keep Pushing for More Funding for Headache Disorders Research

Let's say you've been writing to the people who represent you in Washington each time you receive an action alert from the Alliance for Headache Disorders Advocacy (AHDA), but don't feel like you're really making a difference. Think again. We *are* making a difference, and we must keep the momentum going to turn these efforts into real change in the form of increased funding for headache disorders research.

As a result of the lobbying efforts of the generous people of the AHDA, the National Institutes of Health is holding a two-day meeting in mid-May to "develop a long-term strategy to support and promote headache research and develop Headache Disorder Research Benchmarks." To make sure something comes of this meeting, Sen. Patrick Leahy and Rep. Peter Welch are sending a letter to the NIH director, Dr. Francis Collins, and Secretary of Health and Human Services, Kathleen Sebelius (of my home state of Kansas!), to demonstrate their support. The AHDA and migraineurs all over the U.S. need you to take a quick moment to ask your Congressional representatives to sign on to the letter to give it as much impact as possible.

It truly couldn't be easier to write your federal legislators on this topic. Simply follow the link below, add a little custom content to the form letter about how you and your loved ones are personally impacted by headache disorders and why you/we need increased research funding. They're done all the hard work for us. Please, please, please do this and ask your loved ones to do it, too. Put something up on Facebook and send out an e-mail. It takes almost no effort for us to do these little things, but they can have a big impact. People in power are starting to take us seriously, but this is no time to stop.

Alliance for Headache Disorders Advocacy April 2010 Action Alert

Paula Kamen, author of All in My Head, recently wrote a great piece for Ms. Magazine about the inadequate level of research funding for migraine disorder: Migraine: The North Korea of Disabilities. Hopefully getting some attention in a more widely-read publication will help these efforts, too.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Check Out the Chronic Babe Carnival: Work & Career

Have you had a chance to check out the new edition of the Chronic Babe Carnival? What are you waiting for? Chronic Babe's Jenni has gathered some awesome posts about balancing career with chronic illness. Some of these bloggers are new to me and I know you'll like them, too, when you hear what they have to say.

ChronicBabe Blog Carnival #1: I can bring home the bacon! Thoughts on work and chronic illness

And if you haven't been to the Chronic Babe forums yet, give them a shot. They're a unique, supportive gathering place for younger women living with chronic diseases. I can't begin to count how many cool women I've met there from a variety of different walks of life.

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

When Will a Migraine Strike? Tips for Narrowing Down the Possibilities

A number of articles have been written recently about a research study indicating the majority of migraine sufferers do not know when their next attack will occur. While it is true that it can be difficult to predict in advance when an attack will occur, there are things you can do to help you narrow down the possibilities and treat your attack as soon as possible.

Familiarize yourself with possible triggers - Triggers are highly individual and affect each person differently. Having a better idea of what triggers tend to bring on your attacks can help you predict them with greater accuracy. Some of the most common triggers include: changes in weather and barometric pressure; changes in your daily schedule or routine, especially as to sleep and meals; foods containing MSG, tyramine, caffeine and other such substances; cigarette smoke; cologne; chemical fumes; fluorescent lighting; exercise; alcohol, especially red wine; stress; hormone fluctuations; and overuse of pain medications.

Identify your triggers by keeping a diary - Keeping a daily diary of your symptoms, mood, medication use, sleep habits, diet and activities can help you see patterns over time. If you begin to notice that you feel irritable, sweaty, hot and lethargic before an attack (like I do), you will know an attack is likely imminent when these symptoms come on you and know to take your treatment medication right away and slow down and take it a little easier than usual.

Try an elimination diet - In addition to keeping track of what you eat in a diary, an elimination diet is the best way to identify foods that trigger migraine attacks. In my opinion the best elimination diet is covered in Dr. David Buchholz's book Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. I'm not a huge fan of the rest of the content in this book as I feel it contains a lot of misguided advice and inaccurate information, but the information about elimination diets is top notch and well worth the cost of the book. Heidi Gunderson has a blog and cookbook filled with great recipes that follow Dr. Buchholz's elimination diet plan: Migraine-Free Cooking.

Always be prepared - Keep your treatment medication & anything else you need to soothe and comfort yourself during an attack close at hand. It's a good idea to have duplicates of these items at home and at work if you work outside the home.

Sources:
The Migraine Trigger: What They Are & How to Avoid Them
Common Triggers of Migraines

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Looking Ahead: Musings About Work & Career

Trying to have a career while living with chronic illness is a topic I've often addressed on this blog. My chronic migraines have done a fantastic job of derailing my career as a lawyer and learning how to live without working has been a tough transition. I've lamented everything I've lost so many times in a variety of posts. So in addressing the topic of the upcoming Chronic Babe Carnival, "I can bring home the bacon: Thoughts about work and chronic illness," I thought I might try to bring a different, more optimistic approach to the subject by looking to the future.

Rather than dwelling on what I've lost, I'm trying hard to focus on what I can develop for myself given where I'm at right now. Easier said than done, of course. I feel incredibly fortunate that I've been able to focus exclusively on my health needs since I stopped working. But between the appointments, treatments, research and symptom-imposed down time, I'm starting to feel less and less able to pursue my professional goals.

I would love to be able to help more people with their disability-related legal issues. This would allow me to work from home, for myself and on my own schedule. I have lists of ideas for promoting this as a business and a great deal of enthusiasm for the field. I'm proud of being able to help the people I have worked with, but it has been months since I've felt up to putting any of my business development ideas into motion. I find that so frustrating. I'm still able to read, knit, blog, listen to music, watch movies and chat with friends. But otherwise I'm stuck waiting, hoping I'll soon feel well enough to get back to soliciting clients and working on projects that will fulfill me and advance my career.

Every day I'm unable to practice law I fear my skills and knowledge are slipping away. I try to keep sharp by reading as much as I can and thinking about legal issues (for fun, imagine that!), but it's just not the same. Still, if I get to the point where I can have my own practice at least part time, I know I can brush up on disability-related legal issues and shouldn't have any real problems keeping up. In the interest of taking on a more positive attitude, I know I should focus on the people I have been able to help. They needed my advice and experience and wouldn't have been able to get the benefits they badly needed without my help. I'm working on it.

Related Posts:
Finding a Meaningful Path When Life Changes Course
Grieving My Old Dreams
Being Thankful for 'Bad' Luck
Rebuilding My Foundation
Refund

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Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.