There has been alot of talk in recent years on how accomodating and inclusive our society has become for those with disabilities and about the increase in programs targeting the disabled population.  iUnfortunately, these programs are set up for those with static disabilities and not for those with chronic illness.  What is meant by a static disability is one that remains constant and does not change.  A good example of this is that guy in the wheelchair we all think of who perhaps is a quadriplegic or has some static condition that impairs his ability to walk.  Unlike static disabilities, the disability caused by chronic illness changes frequently and is often hard to predict.  For example, a person with Lupus or another chronic medical condition may have lots of energy one day and be able to work with little difficulty only to be bedridden the next.  This can pose a very difficult problem when trying to work or perform other necessary tasks of daily living. 

Unfortunately, most of the programs designed today for the “disabled”, although claiming to be inclusive, are geared to those with static disabilities.  The best example of this is Social Security Disability.  The social security system defines disability as “‘inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or expected to last for a continuous period of not less than 12 months”. Again, by definition alone those with chronic illness technically meet the social security systems criteria for disability.  However, it we take a look at the way the system actually works when one goes on disability, it is clear that those who designed the system did not have a clear understanding of chronic illness.  First off, when one applies for and gets accepted for social security disability, which is a difficult task in itself, most people with chronic illness are denied the first time around (there are exceptions to this of course).  Because most chronic illness cannot be seen unless one is in a wheelchair or has obvious physical deformities or impairments, people with chronic illness are often told they are not ill enough to obtain benefits and that they can do some form of work.  It has been thought that the system automatically denies many with chronic illness to reduce financial burden on the system because they are often not well enough to advocate for themselves and go through the appeals process and certainly won’t have the money to hire a lawyer to assist them.  If one decides to go through the appeals process and is “lucky” enough to win their appeal and obtain disability benefits, they then find themselves having to rely on the small amount they are given each month in comparison to what they earned while working.  Interestingly, those with blindness automatically obtain a higher monthly disability award than any other disability group, yet since blindness is a static (and devastating) disability; most people who become blind learn to adapt and are able to obtain gainful employment.

Should a person with chronic illness decide to go back to work, here’s where the problems really start.  The social security system allows for a nine month trial work period, where a person on disability can work as much as they want and earn as much as they want.  The system has a set amount of income it deems as “substantial gainful employment” and if a disability recipient makes more than this amount consistently for those nine months, he or she is not considered able to work and loses benefits.  Should the employed person need to go on benefits again, the system allows for a thirty-six month extension in which he or she can obtain benefits again without having to re-apply.  This all sounds well and good, however, for someone that is chronically ill, one may join and leave the work force many times within that extention period and once it is used up, has no cushion to fall back on if he or she gets sick again.  Often times, people with chronic illness CAN function for a long period of time, from months to years, only to become very ill and need to go back on benefits.  This lack of a financial cushion to fall back on is a major reason why many with chronic illness do NOT go back to work when they can do some work.  I myself find myself in this dilemma and want very much to go back to work but fear I will get sick and lose my benefits for good since I am done with my thirty six month extension.   

So, the above explanation of how the social security system works illustrates my point that the social security system is set up for those who have static disabilities (such as a work injury or another condition that will eventually improve and is predictable and short lived) and not for those with chronic illness, whose disabilities are constantly changing.  I known many people with chronic illness who are desperate to get back to work but who fear losing their disability benefits should they become to sick to work again.

Over the years, the social security system has developed numerous programs to help those wanting to go back to work.  Their ticket to work program helps recipients go back to work by providing them with vocational rehabilitation services and other resources.  For anyone who has been through vocational  rehabilitation, you will know that the jobs they are training you are are not going to land you a job as a professional.  At best, they will train you for some clerical jobs or those that do not require beyond an associates degree.  Many state vocational departments will provide funding for those with disabilities to obtain a college degree.  However, what one must be aware of is that, most (but not all) people with chronic illness have had a substantial work history before getting sick.  Unlike someone who has a disability at birth, such as mental retardation or a learning disability, many chronically ill people have held professional jobs with professional pay.  However, when they attempt to go back to work or seek assistance from the government, they are often encouraged to seek out “less stressful and complex” jobs in order to prevent a flare of their symtoms.  Those with chronic illness often find themselves being pushed into or “trained” for the same type of low level jobs as those with intellectual disabilities.  Not only are these jobs an insult to the intelligence of someone with chronic illness, they do not pay enough to support a family or often times, even oneself.

Even when returning to menial jobs, which are less stressful and lower level than their previous jobs, a person with chronic illness often still finds it very difficult to work due to lack of sensitivity from bosses and co-workers about any illness-related limitations he or she may have.  This point brings me to another government program (or in this case, piece of legislation) that is not inclusive of the chronically ill: the Americans with Disabilities Act or the ADA for short.  The ADA was put into place in order to provide “reasonable accomodations” to those with disabilities so they can continue to work.  By reasonable, they mean any accomodation that does not interfere with the functional aspects of a job and does not put undue financial or other hardship on the employer or co-workers.  In other words, if a person with a disability applies for a job as an engineer, he or she must be able to perform the main duties an engineer performs even if they need a special form of equipment or another accomodation.  Only business with over 100 employees are required to comply with the ADA.  However, even though the act is law, many employers do NOT comply with it and this is especially true when it comes to chronic illness. 

Since chronic illness is not a static disability, as i stated before, it is often difficult to define what accomodations one might need.   Someone with a static disability such as quadriplegic or a blind person, may need special voice software in order to answer phones or use his or her computer, however once this is accomodation is put into place, he or she can usually perform his or her job without further programs.  In contrast, someone with chronic illness has frequent and unexpected doctors appointments or hospitalizations and may need extra time off or need to work flexible hours to accomodate these appointments.  These accomodations often cost little to nothing for employers, as opposed to those requiring the purchase of specialized equipment in order to work.  However, they are often ongoing and ever changing, depending on the person’s health status and many employers frequently get aggravated at chronically ill workers for needing “special treatment” and for taking so many days off.  Co-workers have also been known to become bitter about the extra “vacation” time a chronically ill person gets. I have had personal experience with a former boss not complying with the ADA and my co-workers getting angry at me for taking off so much time when they come to work every day even with a bad flu. (Thanks for the germs by the way!!)

As a result of the ongoing nature and lack of concreteness of the accomodations needed by someone with chronic illness, many employers do not comply with the ADA and many people with chronic illness have found themselves out of a job when returning to work after a hospital stay.  Obviously, chronic absenteeism from a job can place a huge burden on an employer and other employees and it is understandable that they will need to replace someone who is absent more than present.  However, if accomodations for the chronically ill were granted in the first place, such as a flexible schedule to allow to go to doctors appointments and take care of oneself, extra time for breaks to eat with medication that requires food, ability to work from home on days one is unable to make it into the office, and other reasonable accomodations, most people with chronic illness would be able to hold down jobs and be more likely to return to work and get off the social security system. 

In conclusion, over the years many programs have been developed to assist those with disabilities with working and living more fulfilling lives.  Unfortunately, many of those programs have left out those with invisible disabilities or chronic illness.  In order to live meaningful lives and be accepted by society and even amongst the disabled, the definition of disability must change to include those with constantly changing disabilities and the programs for the disabled must become more sensitive to the unique needs of the chronically ill.

My experience with chronic illness and my personal journey towards wellness has been and continues to be a road filled with many twists and turns and often times, a road that feels neverending.  In a matter of four years (although I have been ill for many more), I have seen myself go from working a full time job and pursuing graduate studies to being on disability and totally bedridden and almost paralyzed at one point.  Even while being on disability, I have been working to start a non profit organization for the chronically ill, assisting those with chronic illness with locating health resources, and leading a social group in my local area.  

I guess I can say I am a total “type A” personality, which I often wondered was a major factor in my getting sick in the first place.  Ironically, this personality and my refusal to fall into a “sick role” was also one of the greatest factors in my managing my illness and has helped me transcend times in which I could have easily given up.   About six months ago, I suffered a serious spinal cord injury as a result of my chronic inflammatory disease.  I was “lucky” enough to have gotten surgery a few days before I would have become totally paralyzed,and I use the word lucky in the literal sense. The month prior to winding up in the hospital and needing urgent surgery, I had eleven visits to the emergency room, a visit I do not make unless I am in agony.  Despite my crippling pain and desperate efforts to let doctors know there was something serious going on, unlike anything I ever experienced before,  the doctors continued to tell me the pain was just a flare of my chronic medical problem. 

My final ER visit, which was precipitated by my inability to urinate, walk, feel sensation in my body, and the most excrutiating burning pain of my life significantly alarmed the doctors and finally prompted them to admit me for testing.  The testing showed I had three discs in my cervical spine herniated so badly, they were flattening my spinal cord like a pancake.  I was told by the neurosurgeon that I might never walk again and at best, the surgery may prevent the progression of symptoms.  Despite the horrific news and my extreme anger towards the doctors that previously diagnosed me incorrectly, something caused me to hang on and keep going. 

After my surgery, I had a recovery frought with uncertainty about regaining sensation and being able to urinate on my own or even walk, extreme pain, and wearing a neck brace for months while the glands in my neck swelled up from my chronic illness, making it difficult at times to breathe.  I spent time in rehab trying to regain strength in my legs and arms, barely being able to lift myself up at time.  There were times I wanted to give up and put a permanent end to my pain, yet something in me kept going.  Something in me told me I had a reason for being here, which was to help others with chronic illness and help to ensure they wouldn’t suffer needlessly, as I had. Luckily, I did make a full recovery from that injury and am walking again just as well, if not better than I had before.

After suffering the spinal cord injury, which I knew in my mind was caused by my chronic inflammatory condition, I knew I could no longer do what I had been doing for so many years, which was accepting being ill and the fact that no doctors were able to help me get well due to the complex nature of my illness. Although I had always maintained a positive attitude about living with chronic illness, I never thought about the possibility that things could be different.  I just considered myself learning to cope with a hopeless situation with a positive hopeful attitude.  My spinal cord injury, while traumatic, helped me realize that I could no longer sit and watch my illness progress even further until it eventually killed me.  My anger towards the drs that allowed me to become paralyzed and towards the doctors I had seen over the years who painted a bleak picture of my prognosis could have easily took away the last bit of hope I had left. Instead, it actually served as a vehicle for me to finally decide NOT to accept my situation as being hopeless and to decide to do whatever it took to get me well.   In my case, this meant seeking out a holistic medical dr and making drastic changes in my lifestyle. 

For years, as my health worsened to the point of total disability, I had been resistant to trying alternative health care because of fear instilled in me by conventional drs and extreme guilt over having to borrow money to pay for them. Ironically, the traditional treatments that I was told by drs were “safe” were slowly killing me.  I knew conventional medicine was not working for me.  I knew my current diet, although healthy, was not working for me.  I knew I had unresolved emotional issues preventing me from healing.  I knew my current primary care doctor was not helping me. Yet, I refused to do something about it because I had deeply internalized the idea that my illness was untreatable and there was no doctor that could help.  Well, I think it took my almost becoming permanently paralyzed to finally wake up and make a conscious decision that I WAS going to make any change in my life necessary to get well and was going to seek out the type of doctor I knew I needed, even if I had to borrow money from my family, which they offered in the past. 

The decision to get well lead me to doing research on the best doctors and the best treatments for my illness.  After a lengthy search, I finally found the doctor who I had been seeking for over ten years and he was only two hours from my house!  Lucky for me, I was able to get an appointment with him fairly easily and as soon as I met him and he started talking with me, I KNEW he was the doctor I was looking for.  He was the first doctor ever to ask in detail about my emotional state, to discuss nutrition in detail, as well as addressing the fact that I was chronically ill as a child.  His approach is to treat me as a person and look at all contributing factors to my ill health: emotional, social, environmental, physiological, etc.  He was the first doctor ever to hold my hand as I cried in his office about how ill I have become and how other doctors I had were not listening to me as I was slowly becoming paralyzed. 

I am a firm believer that things happen for a reason and people come into our lives for a reason. Well, there is a reason I found this doctor.  After nearly giving up hope of ever finding anyone or anything to help me and accepting learning to live with my illness and “cope”, I finally found a doctor who I strongly believe will help get me well.  I have been in treatment with him for a little over a month now and have been dealing with both improvements and temporary setbacks in my health (with my illness, one often gets worse before they get better).  Despite the setbacks, I am hanging onto three things that keep me going: hope, inner strength, and perserverance.  Even in my darkest times when I am dealing with severe worsening of my symptoms and wonder how I will survive another day with crippling pain, fatigue and other debilitating symptoms, I push on.  Giving up would not only mean giving up on myself but giving up on those I have helped with chronic illness who have relied on my positive attitude and hopeful spirit.  I know one cannot have a positive attitude all the time.  I certainly can’t given the struggles I continue to face.  However, I do believe that even through the darkest of times, there is hope and a strength within ourselves we didn’t even know existed that forces us to keep on going.  It is this hope, strength and perserverance that is what we MUST hold onto when faced with a chronic illness or other life altering situation.

Autoimmune diseases are the leading cause of chronic illness today.  Difficulty in diagnosis and treatment often lead to worsening symptoms and subsequent disability.  All patients with autoimmune disease or those seeking a diagnosis are encouraged to become as educated as they can on their disease process and managing symptoms.

For more information on autoimmune diseases and autoimmunity in general, visit the American Autoimmune Disease Association at www.aarda.org

Also, be sure to bookmark this post for updated information on the forum.

In order to unite others interested in health care reform, not only for the chronically ill, but for all, I have started a Health Care Reform cause on facebook. 

Some of the positions of our cause include:

1. Make healthcare accessible and affordable to ALL, not only those who can pay
2. Increase disease prevention education, starting at the school level to prevent chronic illness
3. Expand services and care for the chronically ill to include alternative health care
4. Make alternative health care more accessible and affordable to all
5. Make organic and healthy products more accessible and affordable for all

To learn more and join, visit “causes” on facebook.com and search for “health care reform”…. we are the newest cause in case there is another similiar one!

Hope to see you there!!!

In health and beyond,

Nancy

Unfortunately, with tons of misinformation and constantly changing and evolving information on nutrition,  it’s often impossible to make sense of what IS healthy for our bodies.  Also, what is not emphasized in most literature on nutrition is that what is healthy for one person is not healthy for another.  I learned this the hard way by decades of what I THOUGHT was healthy eating for ME, but what eventually lead to enormous weight gain and significant worsening of my medical problems.  I was eating tons of soy (as I mentioned before), a low carb, high organic protein/animal fat diet in hopes of losing weight and curing my chronic candida, and eating dairy to increase my dangerously low vitamin D intake.  I was eating my share of vegetables but staying away from alot of fruit due to the sugar content due to the concern I had for my candida.  I was depriving myself of many of the foods I loved without any enjoyable foods to substitute and as a result, I suffered horrible food cravings, which I eventually gave in to and “cheated” on my “diet”.  The “diet” I was following was intended to reverse the affects of growing up on tons of processed and non organic foods, coupled with a stressful environment, a severe chronic health condition, and a genetic predisposition to chronic illness.

What I didn’t know at the time was that, although I was eating alot of organic foods, the meat and dairy I was consuming was having worsening effects on my health.  It was only through discovering alternative medicine that I learned the real truths behind some of the foods I was eating.  I learned that meat and dairy, organic or not, increases the body’s acidity level, which in turn allows chronic infections to thrive.  I learned that even the bottled water I was drinking in lieu of tap still contained lots of heavy metals and was adding to my heavy metal toxicity. I learned that eating raw foods, which I had abstained from in the past due to intestinal issues, actually can be more easily digestible due to their increased enzyme content  (There is a wealth of info on line on the raw food diet).   I also learned that some carbohydrates are essential for my body and that a high protein diet can lead to kidney issues.  In addition, I learned that, for me, vegetarianism was not the way to go due to my anemia and other medical issues, as I was heading that way after initially learning about the effects meat had on my system. For others, they may be perfectly fine staying away from meat completely.  Those with certain medical issues such as Crohns Disease, might not be able to eat as many fruits and vegetables due to fiber content (although they can be juiced) and may have a higher carbohydrate diet than myself. 

With my new found knowledge, I have embarked on an alkaline diet (which you can read about at http://www.energiseforlife.com/alkaline_lifestyle_guide.php), as well as other websites on alkalizing. I have also began eating alot more raw foods.  I  have already seen dramatic effects on my health.  My edema, which has affected my legs for a decade is finally starting to subside.  My blood pressure is finally starting to go down, as is my chronic elevated pulse.  I am starting to lose weight and I am starting to think clearer and have more energy for the first time in a long time.   I no longer constantly crave sugar as I have found healthy alternatives to it and have started eating fruit again.  My constant episodes of irritable bowel syndrome after eating have lessened. I also have cut down my meat intake, but have not completely eliminated it. I am eating it in moderation, along with low mercury fish and legumes.

My goal in this post is not to discourage people from eating soy or to encourage everyone to follow an alkaline or raw diet, although health studies have shown the benefits of making these changes.   The goal is to emphasize that what foods might be healthy for some, and might be regarded as “superfoods” by many health gurus and nutritionists and avid healthy eaters, might not be healthy for everyone.  In addition, I put the word “diet” in quotes because I don’t think of my new way of eating as a diet in which I need to feel guilty if I “cheat”; I think of it as a lifestyle change and one that will be a permanent part of my life in order to achieve the best of health.  Like any lifestyle change, a change in the way you eat must be done slowly and you must expect some bumps in the road along the way. 

In health and beyond!

Nancy

I strongly encourage all those with chronic illness and invisible disabilities as well as those interested in chronic illness care to join in on some of the seminars.   I just checked out the schedule of speakers and topics planned and I am excited to learn about the depth of information going to be covered (I think perhaps some of the best topics yet for chronic illness awareness week!)

The week is sponsored by RestMinistries.org.  For more information and to register for the seminars,

visit the conference site at:  http://www.restministries.org/invisibleillness/conference.htm#schedule

Hope to “see” some of you there

In health and beyond.

Nancy

We even moved over to another membership site in hopes of increasing our attendance.. increasing attendance with a group that is not working might sound crazy, but in actuality, attendance and participation issues are the norm and not the exception in  chronic illness groups and by increasing our group size, we will have more chances for members to participate and not attend events where they are the sole other member there besides the leader.  I felt this was also a way for them to have more activities to choose from and to also find more members which they “clicked” with, which was been a problem for some of our members that cannot relate to others due to age and other factors.  Once we have enough members in our group, I am planning to form a recruitment committee to help me with recruiting new members and welcoming them into the group.  Currently, I am the only person who does the recruiting and it gets exhausting after a while.  With a group of members helping to recruit other members, we can increase our membership and also get members more involved in the planning of the group.  In addition, I am trying to get members to become “area leaders”, which would mean staying in contact with other members in their direct location, as it is difficult for me to stay in individual contact with all members.

Another idea we have tried but did not last was instituting a chronic illness “buddy program” where a member is matched up with another member with similar diagnosis, age, location, interests, etc for added individual support in between events.  Lastly, we started offering online chat groups for those members who are too ill to attend events or for those that wanted extra support in between in person events, however the attendance in these chats has been mimimal and not worth me blocking out a time to lead them when noone is showing up. 

While all of these ideas sound good, many of them are not working and our group is slowly falling apart at the seams.  I am not sure why, but despite all my efforts, I may have to dissolve the group in the near future.  It would greatly sadden me to do this, as I know members who have greatly benefited from the group and also know that there are probably alot more people in the area who would benefit from a group like this.  My next plan was to  recruit members by contacting a local paper to have them do a story about me and the group, however I am afraid to “toot the groups’ horns” if we are having alot of issues. 

With this said, I’d like to start a dialogue with other chronic illness support group leaders about attendance and participation issues and how they have handled them… what worked, what didn’t work, etc. I;d also love to hear from those who have attended support groups for chronic illness and would like to share ideas on what they would like to get out of a group (be specific) and what would encourage them to attend and participate.

Thanks so much for your input.  I believe that working together, we can address issues much more effectively than on our own, especially when working for the same cause!

Happy and healthy shopping!!

I’d like to set up a focus group in the phoenix, az area to get your input on what you’d like in a comprehensive chronic illness organization.  I will also be putting together a survey which I will be sending out via email to those interested in providing their input and ideas for services.  In addition to formal surveys and the focus group, I would also like to talk informally to those that are interested about your experiences with the healthcare system as someone with chronic illness and ideas on how to improve it, as well as obtain other input on what you’d like in a comprehensive organization. 

If you are interested in being a part of any of these activities, please email me at cifrontiers@aol.com

Some of my ideas are already being put into action. If you’d like to read more about the network I am developing, visit us at www.chronicillnessnetwork.com

In health and beyond!!

I’d love to eventually see organic foods and foods for people with special dietary needs (gluten free, wheat free, etc) made more accessible, not only in supermarkets but in restaurants.  I can’t tell you how many times I have gone to restaurants and have slim pickins on healthy options for me.  And, wouldn’t it be great to open a fast food chain for healthy and organic eating so those of us who eat this way and are too tired to cook dinner or need a quick bite can go and pick something up?? Hey, I think that would be a great idea, just don’t know how feasible it would be because of how much food would need to be produced in a short period of time.

Any thoughts on making organic and specialty foods more affordable and also more accessible, both on the shelves of the supermarket and on the menu in restaurants?