How to Live Well with Mixed Connective Tissue Disease or Chronic Illnesses

Mixed Connective Tissue Disease and many chronic illnesses (especially autoimmune diseases) vary in intensity day by day. This makes it hard to plan week. Heck, with autoimmune diseases the intensity can vary hour by hour. I have chronic migraines. These can descend on me at any time; I know I have less than an hour to get to a dark place and lay down.

How is it possible to live a good life when your life is constantly interrupted? How do you live well? So many people tell you to pace yourself when you are ill. In some ways this helps you to get through the day. It helps to get tasks done. But If you do you will get through the day living a mediocre life never doing anything exciting. Sounds boring, doesn’t it? I’ve tried it and it is.

I never signed up for a boring life. I want to really live my life. I want to really drive these points home even though I’ve mentioned them before. So the question is what do you do? You take full advantage of each and every moment in which you feel good. These are the times I go outside (wearing appropriate gear to protect me from the sun) and enjoy the fresh air, or take a very short walk. So what if that day I only can make it from my drive way to the next one on our block. It still feels glorious. I may pay for my walk in the garden or outing with a friend for the next two days be stuck lying on the sofa; however, I will be living life instead of watching it pass me by.

Taking a break

I'll be back after the 29th of August!*Source

Taking a Break from Your Chronic Illness if Only for a Moment

Michaels of Lancaster Pa

Most Americans take some form of vacation every year. I have had "staycations" instead of vacations for a very long before this was even thought of by most as a politically correct option. I did this because there was no such thing as extra money in our home. Money was spent on school supplies for my children (i.e. shoes kids out grew, backpacks, etc.), food, doctor visits, and my medicine.


If we were lucky in the summer we took day trips in the area, mostly to things that were free (gas costs money, no surprise there!). As far as actual vacations, we tagged along with my sister's family and my mother down to the Outer Banks; we to the shore with my husbands family, and we took the kids to Williamsburg. In 29 years other than our honeymoon, that's pretty much it on vacations. But this week I need a vacation from my  illness.This past week was a horrible week for me; I needed a break from being sick, even if it was for a couple of hours.

Sketch of Alexander having a horrible day.* Source

As I love crafts and art projects, my daughter, Chrissie and I headed off to one of the two Arts & Crafts chain stores in Lancaster Pa. We had our choice between Michaels (which tends to be less busy because it is the newer of the two stores) or A.C. Moore. These two stores are actually located across the parking lot from each other. I wasn't in the mood for long waits in line or lots of noise so we choose Michaels.


At this point in time I didn't know that I made the best choice I ever could have made. Michaels has perks that AC Moore just doesn't have.Count yourself lucky if you have Michaels in your area (No more AC Moore for me!). Not only is Michaels  a great arts and craft stores in general, but in my experience, I have never found a store that was better equipped or more customer friendly for disabled customers.

The handicapped parking at Michaels is actually adequate for the store (well, accept on Saturday mornings after-all no place is perfect ). They have a checkout line for those in wheelchairs. The handicapped bathroom is clean.The aisles are wide enough for wheelchairs and keep reading because even better things were to come. It was at Michaels that I had a lovely break from my Mixed Connective Tissue Disease and for a change I didn't have a Migraine.


The Manager on duties name was Misty Mutz. She found me a wheelchair and it even had a basket that went over the top of the chair. Unlike most store wheelchairs, this one wasn't old and rickety. The chair was comfy and sturdy. Misty asked me what I was looking for and took the time to push me to where I wanted to go and then she pushed me to go to look for my next item. I felt bad that I was taking up her time. I'm sure you've heard the old break up line, "Its not you, its me"; as I didn't want to take up any more of her time  I told her I could get where I was going on my own. Although, I would have loved to have spent the afternoon with her for she was a most pleasant person. Shortly after Misty left, my daughter returned from her wandering.


We had so much fun. At times, my daughter became "pushy" as she pushed me around the store. At other times, I raced up and down the isles just because I could be in a store and get around by myself. Although, I was in a wheelchair I totally forgot about having Mixed Connective Tissue  Disease until I was totally worn out from racing about in the wheelchair.


During my time at the Michaels, I laughed and giggled like a kid. I flapped butterflies through the air; believe it or not phobic me even touched and played with stuffed plush spider and made fun of myself. Not once did I think about doctors, medications, illnesses, or would I be hurting from the activity that I did tomorrow.I enjoyed the happy present that I was in.

Source

Living completely in the moment, when things especially when things are going well (you should try to live in the moment most of the time; however, when having a painful procedure it is helpful to think that it will be over soon...) I think this is the key to taking a break from my illness and living in joy. I need to fully live in these happy moments whenever they present themselves. I can't change the past. I really have no control over the future. Yes, I can try to influence it by taking my meds and taking the best care of myself possible but other than that it is the best I can do. SO if I ever feel like the boy, Alexander, and I am I'm having a terrible, horrible, very bad...I think I'll move to Australia kind of day...I think I'll take an illness break an perhaps go to Michaels again. Then I can go shopping for art projects; if I'm very lucky I can go wheelchair racing in the isles while my daughter tries to keep up on her two legs against my 2 wheels.

One of my favorite books when I was young. Source*

A PineAPPLE a Day Helps Keep Mixed Connective Tissue Disease Away

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You've heard the old saying, I've heard the old saying, "An apple a day keeps the doctor away". There is truth in that old proverb, but I'm not going into it today. But if we change it up a bit and substitute pineapple for apple, you've hit upon something I discovered by accident. 

This summer I have gotten the best sales on pineapples. Now in my house we eat all but the outer skin, even the core. My out-laws in-laws got me hooked on these pineapple popsicles when they came back from Hawaii.

Source

In Hawaii, they take the core of the pineapple and cut it into long strips and freeze it. Then they eat it like a pineapple popsicle. It is about as delicious as frozen white grapes on a hot summer day (try it; you'll love it). 

When I started out eating more pineapple miraculously I started to feel better. I know from my education that food can act like medicine so I began to explore how pineapple could help Mixed Connective Tissue Disease (MCTD).

*Bromelain

Bromelain is a type of enzyme that may be consumed to reduce arthritic pain and joint stiffness. This enzyme is found in the stem and the core of pineapple and in pineapple juice. Bromelain works by promoting the production of agents that relieve pain and swelling. 

The University of Maryland Medical Center recommends ingesting bromelain daily to reduce inflammation and pain. Talk to your doctor or health care provider prior to taking any supplements containing bromelain.

* http://www.livestrong.com/article/557167-a-diet-that-helps-mctd-symptoms/#ixzz24Cojkf8l 

Creative Reframing Illness and My Source Of Hope

http://www.bringitinfocus.com/wp-content/uploads/2012/06/Perspective-2.jpg

It has taken me  a couple of years to accept that I have an incurable illness and that as a result, I need to change my life. I'm not just referring to my way of life such as trying to rid my life of stress, anger, and giving everything I have within me, I need to save a bit for myself. I also need to change directions.  

One of the biggest ways in which I needed to change is I needed to embrace my creative side and the fact that I am a creative person. And if I am to enjoy the rest of my life it is out of this creativity that I will ultimately and intuitively fine my purpose for the rest of my life, for the script I planned for life  just wasn't going to work.  I needed to find a more creative way to reframe what was happening to me. 

As one person I heard put it so succinctly said,  "When you are told you have a rare, incurable disease...your life changes immediately. Things are put in perspective. You take each day, each moment, and each second one at a time". You can't afford to take any thing for granted.

Whether you are stuck on a sofa, in a reclining chair or  in bed, it is hard to be depend on others for life's daily necessities such as making meals , walking to the bathroom, etc. Especially having worked as a registered nurse, these were  scenarios I never imagined for myself. 

Yet in the quietness and alone time. in the stillness if I listened carefully I could find time to 'hear God's voice through the Bible. And through at times although I felt alone, I knew I was not forgotten. Although there is so much I don't have control over, I know ultimately God is in control. Knowing this can help bring me peace.

It Has Been a Long Week - Humor

There is nothing like an insurance screw up to make for a long week or even a long month. At the end of July, my doctor sent in a prescription for Synvisc (artificial synovial fluid that gets injected in the knee for osteoarthritis) to the pharmacy. The pharmacy sent the script to the specialty pharmacy. Sounds simple, but it isn't. Somewhere along the line something went wrong ; all this time the wrong pharmacy and specialty pharmacy have been involved. I didn't find this out until yesterday. It took a conference call between the doctor's office, the insurance company, two pharmacies, a specialty pharmacy, myself, and a partridge and a pear tree to get things figured out. Long story short, everything is now fixed but I won't get my injection until the end of the month and I fele like:

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Mixed Connective Tissue Disease

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After dealing with joint pain, muscle spasms, migraines, extreme fatigue, malaise, and brain fog, my rheumatologist finally figured out what was wrong with me. I have Mixed Connective Tissue Disease. It takes most people years to get a diagnosis; it certainly has for me. I have been waiting for a diagnosis with some of these symptoms for twenty plus years.

The cause of the disease is not clear and there is no known cure for this progressive disease. Researchers believe that viruses may trigger the misdirected immune response.

Mixed Connective Tissue Disease (MCTD) is an auto-immune disorder with a combination of symptoms from various connective disease such as Lupus, Sjogren's syndrome, Rheumatoid Arthritis, Scleroderma, Raynaud's syndrome and Polymyositis Apparently it can develop into one or more of the other connective tissue diseases later on in the progression of the disease.

Mixed Connective Tissue Disease (MTCD) is an auto immune disease. In other words, the immune system that is responsible for fighting of diseases, mistakes normal healthy cells for intruders and tries to destroy them, in MTCD the immune system mistakenly attacks the fibers of the body that provide the framework and support your body.

*MCTD can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, endocrine, digestive and nervous systems, and blood vessels which all are made up of connective tissue. There are reports of psychiatric disturbances, and the signs and symptoms of MCTD differ from person to person, with the symptoms of either Lupus, or Scleroderma, or Myositis or other autoimmune disease being most prevalent.

The disease can range from mild to life threatening. The lungs and kidneys are particularly at risk. It is estimated to attack women eight to fifteen times more frequently than it attacks men. So, it is primarily a woman's disease, as are most of the 80 (to 120) or so autoimmune diseases. Figures, right?

Sounds scarey, huh? You bet. My emotions run from anger to sadness to wanting to be the first one to beat this thing. 


*http://mylifewithmctd.blogspot.com/

Writing to Heal

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I've missed not being able to blog the last couple of days. I hate it when my computer is "ill" too. It brings up those negative feelings of being ill. I'm not good with computers. I know I never will be. This isn't negativity speaking. This is simply a fact. I've discussed it a length with my therapist.Ever since the two neurological incidents, in 2006 and again in 2008, I find it extraordinarily difficult to learn and retain anything new. I might "get it" for a week or two and then it is gone. Anyway, when my computer is down I feel helpless and like that part of my world is out of control. When things like this happen, I like to harness the healing power of writing.

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Writing heals. This has been my belief for a long time. I remember journaling was my salvation as a kid, that was until my mom found and read my journal (Please if you are a mom give your kid some privacy and don't read your kids journal). You'd be surprised at what comes out on paper sometimes or what is said into a tape recorder that has been flowing along in your unconscious. I have never questioned the why of the wisdom of writing. It just works for me. But don't take my word for it. Take the word of the American Psychological Association. After all they are the ones that are always encouraging journaling. This is what they have to say:

*is no stranger to therapy. For years, practitioners have used logs, questionnaires, journals and other writing forms to help people heal from stresses and traumas.

Now, new research suggests expressive writing may also offer physical benefits to people battling terminal or life-threatening diseases. Studies by those in the forefront of this research--psychologists James Pennebaker, PhD, of the University of Texas at Austin, and Joshua Smyth, PhD, of Syracuse University--suggest that writing about emotions and stress can boost immune functioning in patients with such illnesses as HIV/AIDS, asthma and arthritis.

Skeptics argue that other factors, such as changes in social support, or simply time, could instead be the real health aids. But an intensive research review by Smyth, published in 1998 in the Journal of Consulting and Clinical Psychology (Vol. 66, No. 1), suggests that writing does make a difference, though the degree of difference depends on the population being studied and the form that writing takes.

Researchers are only beginning to get at how and why writing may benefit the immune system, and why some people appear to benefit more than others. There is emerging agreement, however, that the key to writing's effectiveness is in the way people use it to interpret their experiences, right down to the words they choose. Venting emotions alone--whether through writing or talking--is not enough to relieve stress, and thereby improve health, Smyth emphasizes. To tap writing's healing power, people must use it to better understand and learn from their emotions, he says.

In all likelihood, the enlightenment that can occur through such writing compares with the benefits of verbal guided exploration in psychodynamic psychotherapies, notes Pennebaker. He notes, for example, that talking into a tape recorder has also shown positive health effects. The curative mechanism appears to be relief of the stress that exacerbates disease, researchers believe...

So write for your health. Get your feelings out. If necessary, find a good therapist that you can connect with and discuss what you have written with them. Writing works and so does talking with a gifted therapist. You deserve the healing these therapeutic tools can bring.

*http://www.apa.org/monitor/jun02/writing.aspx

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Sometimes Even Computers Get Sick

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Currently I'm on a borrowed computer. This is twice that I have made the mistake of going to this one specific blog; however, when I do I pick up a Trojan that prevents me from typing anything, and I do mean anything on my computer. So if you are waiting for me to respond to you, I will be back. My virus scan is more than capable of knocking this virus out. However, it takes a L O N G time to run a full scan. So I can't really post today.

How Art Heals

I've always known art in any form was a healing force. Starting at age 8, I began to learn at least one new craft every year until I was 16. Some of the things I learned were: knitting, crocheting, tatting, thrushing, stain glass, decoupage, mosaic, needlepoint, embroidery, crewel, piano, and voice etc. Some of these were taught by teachers, some by my grandmother, but most were self taught. Amazingly enough, some of the ones that were self taught I became good enough to teach adult courses when I was in my early 20's.

I found that listening to concerts, walking through art galleries, or through beautiful gardens to be healing places. Listening to great music and reading beautiful poetry is healing as well. However, there is something special and healing in the art of creating.

How art heals: mind- body physiology

A re-print

http://www.artashealing.org/ahfw3.htm

*Scientific studies say that art heals by changing a person's physiology and attitude. The body's physiology changes from one of stress to one of deep relaxation, from one of fear to one of creativity and inspiration. Art and music put a person in a different brain wave pattern, art and music affect a person's autonomic nervous system, their hormonal balance and their brain neurotransmitters.

Art and music affect every cell in the body instantly to create a healing physiology that changes the immune system and blood flow to all the organs. Art and Music also immediately change a person's perceptions of their world. They change attitude, emotional state, and pain perception. They create hope and positivity and they help people cope with difficulties. They transform a person's outlook and way of being in the world.

In fact it is now known by neurophysiologists that art, prayer, and healing all come from the same source in the body, they all are associated with similar brain wave patterns, mind body changes and they all are deeply connected in feeling and meaning. Art, prayer, and healing all take us into our inner world, the world of imagery and emotion, of visions and feelings.

This journey inward into what used to be called the spirit or soul and is now called the mind, is deeply healing. For healing comes to us from within, our own healing resources are freed to allow our immune system to operate optimally and that is always how we heal. This is the contemporary version of freeing our healing energies and is now recognized to be crucial to healing. We go inward on The Creative Spiral together through art and music.

Healing ourselves with art.

The essential process of healing ourselves with art, music, or dance involves our own personal change. When we are ill with a physical or mental problem or when we need to grow, we start to heal ourselves with art by opening ourselves up to our inner voices of change. We allow ourselves to listen to those voices and to let their messages to us emerge.

The first step is to see ourselves as an artist. Choosing a medium is the first priority. That may be done already if we have made art or played music before or if we saw ourselves as making art in our daydreams. Or we may have to ask ourselves what we want to do. Am I a painter, a sculptor, a musician, a poet, a storyteller, a dancer? Have I ever wanted to create something and been afraid or too busy to do it?

Clearing a space as a studio or place to practice is next. Getting materials together, orienting ourselves to this new world, looking at art, listening to music, being with friends who are artists, puts in the space to create.The most important step is to make the first movement, to draw the first line, to make the first sound, the raise your head and dance, to write the first word. We do that from a place of no judgement, from a place of letting go, of trust, of love. And we let the process happen by itself. As the lines increase, the sounds connect, the movements join, the words add up, a piece of art emerges and we see who we are. The art becomes a sign of our healing, a visible or audible representation of our own transformation and healing

As we see the art appear outside of us, it looks almost like it has been made by someone else. Its beauty and wonder are almost beyond us and its message more than we could have known. Yet we see it and are witness to its message of growth, change, and transformation.

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Smile, You Might Feel Better

 If you hear a voice within you say "you cannot paint," 
then by all means paint and that voice will be silenced.
Vincent Van Gogh

When I was young, I was told I was good at sketching by art by a gallery owner. I initially believed what he said to me. Later, let me put it nicely, he took advantage of me. Not only did he take advantage of me but I stopped drawing prior to age 16. When I went to college I had to take an art class. It was the first time I had to paint with acrylics and the professor choose what I was to paint. To say I wasn't in to the class was being generous of spirit; however,my friends made fun of my first and last painting for many years.

I learned two things from the above experiences. From the first experience, I believed that if someone paid me a complement they wanted something from me. I also learned to be distrustful of others. From the second incident I believed I wasn't creative. In both cases I believed something about others and myself that wasn't true. It has taken me a long to unlearn the first and I'm still working on the second. So what you think influences how you are and how you act. But what if how you act influences how you are?

*Well, at least in one case scientists have proven this. In many cases if you just smile, you'll feel better. I learned this a long time ago. I have found that if I put a smile on my face, even if I feel bad soon I'll begin to feel better.  This is because, "...smiling activates certain "happy centers" within the brain".

Now I know that smiling doesn't always work. When I was deeply depressed and tried to smile (which I knew usually helped), I ended up feeling like a fraud and it made things worse. In that case, I stopped.

So sometimes when I'm not feeling good instead of putting on clothing that is associated with staying around the house, I'll put on a causal no wrinkle dress, a bit of makeup, and a piece of jewelry. It might take an hour or two to get all this on but it does help. I do feel better when I do it. But the best thing I can put on when I am feeling under the weather is to put on a smile. It almost always makes me feel better.

My daughter smiling.; she is one of the happiest people I know.

Migraine, Disability, Job Loss

The Start

My grandmother and my mother had them; I got them as a teenager. WE ALL HAD/HAVE MIGRAINES.They called them "sick headaches" because of the nausea and vomiting that they would have with them. As a teen my migraines were infrequent. They didn't cramp my style too much. As I got older the pain and the symptoms of migraines got worse. However, my migraines increased in frequency yet every got headaches like mine, right. Wrong answer. I thought I just needed to tough it out but each year it got harder. 

Nursing School 

By my second second year of nursing school I had notice a big change in the patterns of my migraines. I felt horrible and miserable with the migraines. I was getting them during my down times; frankly, I had precious little of that with being married, having 3 children under the age of 6, and a job on nights at the hospital. I had gotten Lyme Disease in 1992, when little was known about the disease. So therefore I thought the migraines were a part of the disease and so did my doctor. 

I suppose I should have been paying more attention to how  the pattern of my headaches had changed prior to this (and it had); however, with three small children and having had rough pregnancies I felt too busy to try to record headache patterns. It wasn't until my third year of nursing school that I fully began to understand my migraines were different than headaches. These headaches also had a hormonal component to them.

Case Manager

By 2006, I had been working for a while as a Nurse Case Manager. That summer I noticed something wasn't "right" with me but I couldn't put my finger on it. My migraines were more frequent and I couldn't stay on top of things they way I use to. However, my Asthma was worse than normal too and it was disrupting my sleep. I had been diagnosed several years prior to this with depression when my health started to get worse; however, my mood was brightening. I told my therapist that I felt "off". I said that I felt like what I assumed one would feel like if they were having mini strokes (TIA's). I didn't connect this to the aftermath of a migraine at this time.

At the very end of September, I was on the phone with a patient while at work. She had had a stroke. It had affected her speech.  As we were getting ready to say goodbye she asked me if I was "OK". when I asked her why she said, "If I didn't know better I would swear you had a stroke. With that I hurried off the phone. I looked in the mirror and saw what appeared to be a left sided droop to my mouth. In actuality, the right side of mouth was paralyzed. I was sent from work to the hospital via ambulance.

CAT SCAN?   WHERE'S THE PET SCAN?

At this point, I am a bit vague on some of the details. I believe they called a "code stroke" at the hospital. They sent me for a CAT scan and MRI. No lesions or bleeding on the brain was seen. My The doctors argued over my diagnosis. Some thought I had Bell's palsy, other odd diagnoses were tossed about that I could hear. I was admitted to the hospital for several days and finally the doctor thought I was having a complicated migraine or a migraine varient (see end of page for definitions if needed) and I was sent home (I believe I was still having the same migraine, although it was mild at the time). I was scheduled to follow up with a neurologist.

Because the difficulty speaking had resolved and the paralysis of the mouth had disappeared, I bright and early Monday morning I went back to work as if nothing had happened. My co-workers were shocked to see me back. I attempted to work the week although still wasn't feeling that well. However, I came from a home with a strong work ethic and in nursing school we were taught that, "Nurses don't call in sick, they call in dead". (Nurses as a group are expect to be at work and not call off. There is a high unwritten expectation in the industry that nurses be in good health and to remain in good health to keep and/or apply for a job).

By Friday at lunch time I was not feeling well at all. The edges of my vision made it appear like I was in a dark hall way. Smells, noise, and light assaulted me. I told my boss I was going home sick.  On the way home I ran a red light because I didn't understand that a red light meant stop. I knew I was in trouble when I got on the highway and thought, "Gee there was a red light back there. I was suppose to do something at that light. What was it?"

Nurse Falls Short

I drove straight to the doctor's office. By the time I got there my mouth issue had started again. Now on some details here, once again I am fuzzy. Other details I am clear as a bell.The first one that see me at the office was the Nurse Practitioner. She threw up her hands, tripped over her tongue  and said she didn't know what to do with me (I don't remember if I was seen by her again in the morning or not). 

Either on one or both days I was sent home and I wasn't in the position to argue the point. In retrospect as a physician extender she should have consulted with the physician that was there and bought him into the room to see me. I had the migraine all weekend but it had lessened greatly. 

There are times in life with the universe seems to be trying to teach you a lessen, but I can be a bit stubborn at times, so since I was semi-functional on Monday morning I went back to work with the  droopy appearing mouth.

FIRED

When I got to work, I tried to read but the words didn't make sense; a short sentence I could understand and hold onto the thought but a paragraph ... I couldn't seem to hold the concepts in my head long enough to process what it meant. I couldn't understand what was happening to me. When my boss got in I went to talk to her. It was clear to the both of us I need to go out on short term disability

Although I wasn't shot at dawn blindfold and tied to a post, or executed on the spot, I was fired non the less because I couldn't go back. Initially, I was awarded disability insurance compensation by the company.

Disability

What I thought was going to be a short time off from work has turned into a long time off from work.My migraines had affected both short term, working memory permanently. This was evident on the IQ test  (part of the neuropsychological test) my former company made me take. That test is a whole other nightmare). In 2012, I still can't keep track of if I have given myself insulin in the morning if I deviate from a very set routine. I pre-pour my med box for the week. There are many days I check that box to see if I have actually taken my medications. Some days I end up taking too many pills because I confuse which day it actually is. 

I honestly thought I'd be back to work in one to two weeks. However, I was awarded Social Security Disability the first time I applied and I continue to receive it. Social Security Disability is for those whom it is determined can't do any work. My work disability was suppose to be case I could no longer function as a nurse. 

TERMINATED

Terminated,  (Bah!)  that word sounds like something that should be emblazoned on a tomb stone.  In the Spring of 2012, my former employer terminated my Disability Insurance Compensation. There is a loophole in their Disability Insurance under Mental Health. They feel my migraines have a mental health component because of my depression. They fail to understand that I am depressed because of my failing health not the other way around. I don't have the energy to appeal the decision yet I feel like I have to in order to get the funds to survive. 

MIGRAINE INFARCTION


Whether or not I had a migrainous infarction has been a subject of debate. Initially no white matter lesion seen on the MRI. Later, there was a small spot in the area of memory that showed. At the time about 11 months after the initial migraine that put me on disability occurred, a friend showed me this information from Dr Todd Troost. 

When I showed my neurologist, Dr Troost paper he agreed that I had sustained a migrainous infarct (a stroke from a migraine). So that is how I began to explain to my friends what had happened to me. Then my neurologist back pedaled,; I found he never wrote in my chart that he had agreed with Dr Troot's findings in the first place. I still firmly belief I had a stroke from a migraine that has caused my cognitive impairment, especially in light of the latter MRI that had a small but distinct spot on it in the area of memory. 



SERIOUS CHANGE NEEDED IN THE USA

• The reality is that if I were living on just my Social Security Income it would entirely go to paying for my medications and my doctor visits. There would be no money left for anything. The medical system as we know it needs changed.
• Disability Insurance Companies should not be able to terminate policies for mental health reasons. Mental health and physical health should be treated equally. 
• Migraines need to recognized for the debilitating disease that they are.
• Accept new study:  Migraines that tend to cause Mood Disorder;s not the other way around. * 

According to E-Medicine "Migraine variant (MV) or migraine equivalent is the term applied to migraine, which exhibits itself in a form other than head pain. MV is characterized by paroxysmal episodes of prolonged visual auras; atypical sensory, motor, or visual aura; confusion; dysarthria; focal neurologic deficits; or gastrointestinal manifestations or other constitutional symptoms with or without a headache". And a migraine with an aura usually lasts up to 30 minutes. "In rare cases, the aura could be prolonged, lasting up to 60 minutes, raising concerns of possible stroke".

Complicated Migraines are a horse or should I say migraine of a different color. The same article in E-Medicine describes all the various types of complicated migraines. "Complications of migraine include chronic migraine, status migrainous, persistent aura without infarction (stroke), migrainous infarction, and migraine-triggered seizure. Complicated migraines are rare, accounting for less than 1% of total patients with migraine. " (Yippee, I'm a rare bird..I'd settle for well done. Actually, I just want to be well.) However, according to Dr Todd Troost not all migrainous infarctions show on an MRI. This page in his web site deals directly with migrainous infarctions and prolonged migraines with auras: 

*http://migraine.com/blog/news/expert-review-migraine-and-depression/

I am one of the 25% that have lost a job due to a migraine. 

The Results of the Migraine in America 2012 Study!

The Migraine.com Team is hoping the following information is being passed on to the public.  In light of this, please see below:

Results from the 2012 Migraine in America study are now available to view as a slideshow. The presentation covers important topics including migraine frequency, symptoms, and common triggers. It will also review the significant impact migraine has on sufferers’ careers and relationships.

The Migraine in America survey was completed by over 2,600 migraine patients in May and June of this year, and represents one of the largest studies of this type ever completed.

Please help us spread awareness regarding the real impact of migraine by sharing these resources with friends, family, and colleagues.

Migraine in America Resources:

• Migraine in America 2012 Presentation

http://migraine.com/blog/news/view-the-results-of-the-migraine-in-america-2012-study/

Suffering for Constant Migraines?

From the talented Gary Markstein

http://cognidissidence.blogspot.com/2012/07/do-you-suffer-from-constant-migraines.html

Brain Fog in Chronic Fatigue Syndrome Not All in Your Head

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Those of us with chronic fatigue syndrome or fibromyalgia are familiar with "brain fog" or what medical professionals like to call cognitive dysfunction.  Although on occasion I experience brain fog from fibromyalgia, it wasn't until  I sustained a migraine varient/complicated migraine in '06 and again in '08 that I could truly appreciate what these people go through; that is because this is what happens to me for days after I experience a migraine.  It isn't often talked about  in relationship to migraines so I wanted to bring it up here. 

*Brain fog is a classic part of chronic fatigue syndrome and fibromyalgia (and an after affect of some migraines)

1. Horrible short-term memory,
2. Difficulty with word finding and word substitution (e.g., substituting the word "fork" for "knife"), and
3. Occasional disorientation — Approximately 30 percent of those with CFS or fibromyalgia have episodic disorientation lasting around 30-60 seconds. This often occurs when driving or even turning down a supermarket aisle. It can feel scary, but is not dangerous. Though you may not know where you are (or are going) people seem able to drive or walk safely till it passes. This can also manifest as briefly not recognizing common objects or names (even of children).

In some cases, brain fog is mild.  For some, however, it can be severe and quite scary — especially in professionals who otherwise function at a very high level. Though standard testing will often not pick up the problem, in these cases the brain fog can make it difficult or even impossible to continue one's job.  It may even leave you concerned that you are developing Alzheimer's. But you're not. CFS brain fog is when you keep forgetting where you left your keys — Alzheimer's is when you forget how to use your keys!

... Study Showing CFS-Related Brain Fog Not "All In Your Head"

Meanwhile, the "you're crazy, it's all in your mind" school of thought on CFS continues to recede into ancient history. There were those who attributed the brain fog (and all of CFS) to depression — which was, well, crazy! Here is another new study showing that the brain fog of CFS and depression are not  related.

Study: The role of depression in cognitive impairment in patients with chronic fatigue syndrome

In the test, 57 women with CFS were evaluated for cognitive function using neuropsychological tests that measure mental acuity in areas such as ability to pay attention, to count forward and backward, auditory-verbal learning skills, executive functions, and psychomotor skills.

Participants were divided into two groups, with one group including those CFS patients who suffered depression (based on clinical assessment to determine scores on the Hospital Anxiety and Depression Scale) and the other including those CFS patients who were not determined to be depressed.

The results showed no difference between the two groups in their levels of cognitive deficit in performing attention and executive functions. Researchers therefore concluded that there was no link between depression and the cognitive impairments exhibited by patients with CFS.

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References

The role of depression in cognitive impairment in patients with chronic fatigue syndrome. Santamarina-Pérez P, Freniche V, Eiroa-Orosa FJ, Llobet G, Sáez N, Alegre J, Jacas C. PubMed.gov. 2011 Mar 12;136(6):239-243. Epub 2010 Dec 9.