Healing First, L.L.C.

My Story: 

I recently moved from New York to Arizona three years ago with my husband and kitties. I have been dealing with several chronic illnesses for ovr 20 years and I needed a warmer climate, some of those diagnoses include Late Stage Chronic Lyme Disease, Fibromyalgia, Chronic Fatigue Syndrome, Hashimotos Thyroiditis, Degenerative Disc Disease and Spinal Cord Injury.  I call it my medical smorgasbord of diagnoses, if you will ;)

Most of my diagnoses have been extremely disabling, as well as illigitimized and not accepted by the medical profession, so I know what it's like to suffer many losses in life and also be told symptoms are in your head.  Before finally getting diagnosed with my medical conditions, I was inaccurately diagnosed with every mental health issue under the sun and told my medical problems were psychological and unfounded.  As a result of my illnesses, my delayed diagnoses, and the way I was treated by the healthcare system, I have lost the ability to concieve children, had to give up many of my life's dreams and goals, a full time "traditional job" (which has been more of a blessing than a loss at this point ;), my financial security, and have suffered many other losses.

For many years, I LIVED my illnesses.  Being chronically ill was all I could think about and not a day went by when I did not think about being ill.  I went through all the stages one goes through when diagnosed with a serious illness, i.e. denial, anger., bargaining, depression, acceptance; and I still do. When I was finally diagnosed, I still questioned whether or not I was physically ill because it was drummed into me that I was a "mental patient", pardon the term.  After being told for so many years things are in your head, you start to believe them.  While I became sicker and sicker, I tried to work and pushed myself to the brink every day.  I was not listening to my body at all and was killing myself emotionally and physically with the work load I was taking on.  I tried to do everything myself and did not let others help when they sincerely offered (this includes my husband).  I did not attend support groups because I did not want to buy into the notion that I was "ill" and play the role of a sick patient.  (I later learned that support groups can be helpful and at times invaluable if they are the right ones).  I did everything and anything I could to inadvertently sabatoge my health and made those around me miserable as well.  I refused to accept that I had any limitations and was still trying to achieve the same goals as I was when I was able bodied and this resulted in constant dissappointment and anger towards myself and others. 

One of the turning points in my life came after having broken up with an emotionally abusive ex-fiance who drummed into my head that I would never meet anyone because I was so ill and not worth anything.  They say you often have to hit rock bottom before you make a big change in your life. Well, it was at that point, something "clicked" in me and I decided I could no longer live the way I had been living, which was a life of illness and misery.  After a year of being single, and getting back on my feet with my parent's financial help,  I finally developed the self esteem to get back into the dating world and I met my now husband, Cliff, who has been my best friend, support and my rock through this all. Though our marriage started out with alot of handicaps, if you will, and is still strained, having his constant financial and emotional support and love has made a dramatic difference in my recovery.

Throughout my marriage of now 7 years, Cliff has been supportive of my endeavors, my illness, and my hopes and dreams.  Having a supportive husband and strong support system in general definitely makes a huge diffierence in living successfully with chronic illness.  However, I can't say everything continued to go as well as it did when we first met.  As I became worse physically, our finances became strained, as did our marriage, our emotional and physical relationship, and many other aspects of our marriage.  We had to make a gut wrenching decision, which was to move across the country since the colder weather was crippling me each year and we could no longer afford the North East since I was no longer working.  Well..this decision ended up to be in ways one of the best decisions we made and in ways one of the worst. 

We did gain wonderful weather, a lower cost of living, and a slower pace in life, which helped my health dramatically.  However, we left behind our support system, including family, friends, and the few Drs I had come to trust.  Without having any support or friends, our marriage became even more strained and I became even sicker from the stress and burden I was placing on my husband.  Though I was still managing my illness better than I did from the onset, I began to slip into my old ways of "living my illness" and allowing it to take over our lives. 

It was not until a few years ago when I sustained a serious spinal cord injury that almost left me paralyzed from the waist up that myself and my husband decided something had to change.  It was this same year that  my grandfather, who I was VERY close to, passed away, as well as the closely timed deaths of several of my young friends who died of various diseases.  All these experiences were the catalyst for me making the decision yet again that I no longer wanted to live a life of illness and depression.  Does that mean I am no longer ill or no longer get down about my health challenges?  Absolutely not.   What's changed in me over the years has been the way I THINK about my disease and the fact that I don't let it stop me from pursuing many of my goals or from re-defining my goals based on what I DO have and can still do. Also, recognizing that my husband and I cannot do things without others help and seeking out a strong support system has been perhaps the most significant factor in my again learning to managing my illness and continuing to manage it successfully.

I can say that not a day goes by when I do not experience some type of symptoms.  Yes, there are still days when I am bedridden and unable to do even the simplest of tasks.  However, the difference is that, in the past, these 'flares" would have sent me into a spiraling depression which would have caused me a significant set back in my recovery or disease management process.  Again, does this mean I do not get depressed at times about the way I feel...absolutely not.  Depression is a normal reaction to living with acute and chronic pain and illness.  However, my learning to recognize the signs and tackle it before it got out of hand has been one of the keys to my being able to successfully manage my illness.

Another key factor has been to learn to better listen to my body and what it's telling me.  I understand that for those with chronic illness, it's so normal to want to take advantage of those days when you are feeling great and accomplish as much as you can.  However, when they day is over, you often find yourself having overdone it and in extreme pain.When I moved to Arizona, I was feeling good and wanted to take advantage of the wonderful weather and this new life my husband and I were embarking on.  Well...after about a year of that, my body decided it could no longer keep up with me.  And...if you're like me, you might not feel the effects of overdoing it for a few days or even a few weeks and think you are smooth sailing and continue at that pace.  However, after many years of not listening to my body and over doing it, I learned to pace myself, even on my good days and break up my activities, as well as schedule activities at the times of day when I am higher functioning. 

Also instrumental in my better managing my disease has been my no longer comparing myself to others my age, but comparing myself to me, as well as keeping a positive attitude.  In other words, learning to accept my limitations (which has not been easy at all) and learning to praise myself for even the smallest accomplishments.  Years ago, I used to get angry at myself when all I could do in a day was go food shopping and then do some laundry.  That was because before I was ill, I used to be able to work full time, come home and make dinner, do food shopping and laundry probably all in one night (or maybe two ;)  However, it took me many years to learn that I am NOT the same person and do have limitations and comparing myself to others who can function normally is not fair to myself and will only end up in my resenting myself and feeling discouraged.  Now, I praise myself for being as productive as I can for the day, even if i didn't get everything I wanted to get done, especially if I had been bedridden the day before.  I give myself credit for having accomplished something other than being in bed all day.  A year ago, I was in a wheelchair, unable to move and walk.  Now, I can walk wherever I want, be it in pain, but I can still walk.  So...a big part of managing chronic illness for me has been attitude and being kinder to myself and less judgemental.

Finally, absolutely paramount for me in managing my disabling diseases has been my ability to find things I love to do and setting realistic goals for myself.  In a sense it's been like re-defining my life based on where I am now.  Among these goals has been going back to work.  For many years, I thought I would NEVER return to the work force because my symptoms were too severe and unpredictable and no employer was going to be able to give me accomodations no matter how much they wanted to.  Well, while going out and networking, I was presented with an opportunity to have my own business and have been working at it ever since. (That's a whole other story ;)  I never thought of myself as an entrepreneur before, however I always wanted to do something new and had an entrepreneurial spirit, as they call it.  Well..with the help of a career consultant, I finally tapped into that spirit and have been running a successful direct sales business and have now embarked on starting this organization, which I am hoping will be a successful endeavor. 

So, it wasn't that I could NEVER work, it was that I could not work in a traditional job and I needed the flexibility to work for myself, something I would have NEVER thought I could or would do in my life.  So I guess part of living successfully with chronic illness is the abilility to think "out of the box" and make things work for you,whether it be in a career, or other life goals and hobbies you discover, even if they weren't exactly what you had pictured in your mind before you became ill.  Is it also of work to run a business?  Absolutely..won't lie there.  My cognitive issues also are a huge challenge for me each day.  However, the sense of purpose and achievement works gives me has been one of the most significant factors in my staying positive and even getting through a recent health crisis, which I describe below.

Another example of be having to re-define my life and consider options lies with my future as a mother.  Not being able to have children has been a heart wrenching emotional struggle for me, which I still battle each day.  However, I have discovered that there are other ways to have children in my life and will be considering adoption or fostering down the road when I am well enough.  Should I not be able to adopt my own child, I will consider working with at risk babies or children so I can channel my strong desire to nuture and my love for children.  Am I still crushed about not being able to have my own biological children? Of course I am and I wonder all the time what they would look like, if they would be like myself or my husband and all the things I always wondered since I was a little girl and dreampt of being a mom.  However, some close friends have helped me realize that anyone can be a biological mother but it takes a special person to adopt or foster a child that has no other place to go or even to nuture so many people with the work I do.  Sometimes it takes others besides yourself to help you realize some harsh truths, especially when your emotions take over. 

So, how did I go from someone who was always angry and "living my illness" to someone who is still chronically ill but is more hopeful and sees a brighter future?

Good question!!  It was a combination of surrounding myself with a strong support system, becoming as resourceful and educated as I could about my illness in order to make informed choices and be very involved in my medical care, speaking to alot of my peers with chronic illness to learn how they coped, seeking professional help from a trusted counselor, seeking help from a career and business coach, surrounding myself with meaningful activities to look forward to and realistic goals to attain, exploring new interests, and learning effective coping and disease management skills, such as pacing, stress management, anger management, exercise, eliminating certain foods that were making me more anxious, and a host of other skills I learned along the way. 

A HUGE factor in my learning to better managing my illness has been to realize that, at times, I may "fall off the wandwagon" and go back into the stages of depression or anger or any of the stages we go through when chronically ill.  Even if one is managing successfully overall, it is normal to return to old ways of thinking, especially during a particularly stressful life event or a severe flare.  However, the difference now is that I have armed myself with all the tools I need to not let that depression or temporary emotional state spiral into months (or even years) of living a life of illness and misery.  One must simply view it was a temporary setback and get back up and start again. The tools that have allowed me to do this include first and foremost, surrounding myself with a strong support system (which I lost when I moved to Arizona), having as many positive things and realistic goals to look forward to, and all the coping techniques I described above.  (See my handouts on the community education page on topics related to coping with illness).

My story does not end here...this year has been the most trying of my life.  I have had a second serious spinal cord injury, have been in and out of the hospital 7 times in 2 months and almost died from acute adrenal failure.   This truly has been the most difficult year in my entire life.  Have my spirits been down lately...of course they have given what I have gone through.  However, I have built so much good into my life that I keep on fighting every day and keep my long term goals in mind, as well as all the supportive people in my life in my heart.

The good news is that there IS life after a chronic illness or acute illness diagnosis..you just have to go out and find it and you have to want it.  Part of working with me will be helping you realize that the person you were before your illness still lives inside you and is yearning to come out and live a meaningful life.  It might not be the life he or she had intended, but it will still be meaningful non the less.

A bit more about me professionally:

In addition to my personal experience with living with several misunderstood chronic illnesses, which to me is more on the job experience than I'll ever get ;), I have a professional background in both health education and social services and I've had graduate training in both public health and social work. She holds a certificate in Adult Education.  I am always attending health conferences and other events related to chronic illness in order to stay on top of chronic illness research, treatment, and support services.  I will soon be earning my certification in Patient Navigation.  In addition, I will be working towards formal certification as a Holistic Health Educator and Health Coach in the near future. 

From both personal and professional experience, I am familiar with the fragmentation of the healthcare system when it comes to chronic illness, the lack of resources and guidance available to sufferers, as well as the the lack of community education about chronic illness and the loneliness they can bring.  My own chronic illness was what drew me to the field of health education and social work, after having been a school teacher for a few years.  It's been my lifelong dream to start a comprehensive organization for those with chronic and acute illness and to the public to help them understand what we go through.  This dream was realized recently when I decided to  finally to start this comprehensive chronic illness consulting organization to provide direct assistance to patients as well as to provide chronic illness awareness education to the general public.

In addition to my work with the chronically ill and persons with various other disabilities, I have done freelance writing for a chronic illness magazine, contributed to a collaborative health education site, medpedia.com, and I am currently the Arizona Patient Representative for the American Autoimmune and Related Diseases Association.

I look forward to working with you on your journey through acute or chronic illness and I thank you for giving you the opportunity to share what I have learned with you as your peer, your guide and your partner in health.