As caregivers we advocate on behalf of our loved ones so their quality of life, their independence and their dignity can be maintained. Many of us become entrenched in our role: many work or have their own families to take care of which cause a lack of self-care.
Many of us also have a gut feeling that passes through our thought processes on many occasions; a little voice that speaks out to us, encouraging us to take care of our own health as well. However, most of us avoid listening to this warning. Consequently, our caregiver stress and burnout cause a myriad of physical, mental and emotional problems that may go undiagnosed and most of all, untreated.
It is also important to note that we will share with one another how frustrating it is for us when our loved ones are into denial; when they don’t want to take meds or do what “We” think is best for them; and yet we do the very same things to ourselves.
Truthfully most of us know the reasons deep down in side why we neglect ourselves; why we put our own well being on hold and all the dynamics or denial that go into ignoring this inner spoken voice but millions of us are finding ourselves in situations where our health is now in jeopardy. The answers vary from caregiver to caregiver.
When we finally make a decision to take care of ourselves, we may begin the search to find a doctor(s) that can assist us. Many of us will go to visit a doctor with an expectation that we will be treated with the same care, compassion and understanding that we have been administering to our loved one(s); but the truth is that the medical establishment; whose oath it is to care for the patient, no longer empowers us or listens to the patient and their symptoms or needs. It puts us into classifications like: once you hit 50, you are over weight, you are menopausal and you are no longer alive and vibrant. They prescribe medications that are designed to meet the general condition such as thyroid, asthma, chronic heart failure, or chronic obstructive pulmonary disease. The dosages are not designed for your specific body types, all your conditions and the other reasons that make your body unique.
It was way back on June 1, 2001 when I consciously made the decision to stop smoking. I just felt it was time. I wasn’t a heavy smoker. In fact there was more second hand smoke from the burning of the cigarettes as I spent 15-18 hours a day working on the computer and business. I monitored myself for several weeks noting the times I would light up, the reasons and what my feelings were through the processes. I came to realize it wasn’t the nicotine I was addicted to but the habit of lighting up and inhaling. I loved to inhale as it pushed my emotions back down especially when I was angered, hurt, frustrated, etc.
I thought it would be easy and it was. I didn’t anticipate gaining weight, because I was at my ideal weight and was eating a healthy diet that had helped me to maintain my weight. However, during the first month I gained approximate 40 pounds and within three months I had gained 70 pounds. I had fallen approximately 10 times head first to the street from the water retention, the stiffness in my knees and due to my weight gain, I was experiencing great difficulty in balancing myself.
After three months I began to plead with my internist to help me find out what was wrong. My blood test finally indicated menopause and hypothyroidism. My thyroid had sky rocketed to 31 points higher than normal on my blood test.
For the next two and a half years, I was treated with Armour. Synthroid and Cytomel to balance my thyroid. The balancing was not an easy task. At times I would need 112 mcg 4 times a week and 100 mcg three times. Each monthly blood test would indicate that the meds weren’t balancing me. Tiredness, hot and cold spells, loss of sleep, emotional upheaval and 40 pounds of fluid retention held control of my body for most of these time periods. And then, I would be balanced for a week or so only to go immediately off balance when there was a stressful situation like an emergency for my mother. And the process would begin all over.
When I call my internist’s office I am always put on hold. The message says, “Our representatives are currently busy helping other “customers.” Customers? How dare they reduce us to this state of mind! These doctors are assistants to us in our overall care and well-being. We need them but we don’t need to fall prey and become victimized by their crudeness and lack of compassion, care and understanding - not to mention their inability to communicate appropriately and effectively with us. (Mind you, not all doctors fall into these classifications, but surely a large percentage do.) We must take the time to research and learn about our symptoms, the treatments that are available, etc. just as we do it for our loved ones.
Two examples of this type of neglect that I experienced in on my own search for help from the medical establishment were as follows:
Dr. A is a well-known vascular specialist in NYC. It took three phone calls to set up a primary consultation appointment. On each phone call, a rude receptionist put me on hold for no less than 15 minutes. Upon arrival a month and a half later for the appointment, I was greeted by the same receptionist who directed me with authority to “sit down and she’d be with me when she could get to me.” She didn’t even ask me for my name.
After sitting and conversing with other new patients in the “ waiting area” I’d like to say reception area; however in this case it was a “waiting area”, several of the other patients shared their similar experiences with me. I finally stood up and screamed out loud so that the staff could hear me in the back room: “ Is anyone going to come out to the waiting area and help us? We have jobs, appointments, and schedules that we need to tend to!
Finally the rude receptionist came huffing out and began assisting us, shoving the papers under our noses for us to fill in. Almost immediately, a nurse came and ushered me into a room where she began taking my pulses throughout my body. She indicated that she didn’t think there was anything wrong with my vascular system or lymph system. She indicated that it might be from my thyroid. Within two minutes she was walking out the door explaining that the doctor would be in to see me in about 20 minutes because he was in a business meeting.
I had been waiting in the office for over an hour. I was becoming unnerved as I had an important meeting to get to so I got dressed and stormed out into the hallway in anger where Dr. A. was pointing his finger in the nurse’s face huffing about how she should get me to wait. I just looked at him and said “I wouldn’t let you treat me, if my life depended on you!” I turned to walk away and turned back to point my finger in his face and said “Don’t think that you are going to report my visit for payment to my insurance company because I am going to tell them about your behavior and the treatment of your staff to me and others in this office!” Then I turned and walked out of the office.
I called my insurance company to complain about his treatment. If you are wondering what their response to me was - they informed me that as long as someone took my pulse, the doctor could bill and the insurance company would have to reimburse them. So much for our healthcare system.
Dr E. was a new gynecologist who came highly recommended to me. I went to him because he was experienced with hormones, menopause and hypothyroidism. Immediately when I began to explain my weight situation to him, he began inferring that people in concentration camps were able to lose weight no matter what their circumstances were - insinuating I was stuffing my mouth and not really dieting properly. I was livid. I immediately let him know that in particular, I have had difficulty losing weight because of my thyroid and because I do not eat enough food to get my metabolism up and burning properly. When he began to examine me, he was so rough, I yelled at him to :remove his hands from me! As he looked at me as if I was crazy, I told him to leave the room, that he was not going to be my doctor any longer.
I stopped dead in my tracks and began thinking about these two negative experiences. At first I reacted like a victim “Why me”? “What am I doing to attract these types of experiences?” What were the experiences trying to tell me?
Medicine today no longer treats us like the old time family doctor who diagnosed us by listening, by weighing our symptoms. We are classified by a blood test or a battery of tests and if nothing is bad enough to show up in these test results, we are dismissed and thought of as hypochondriacs rather than patients who are suffering and need proper care. (The truth is that when something finally shows up in a blood test that is wrong, it is usually way wrong to show up in the first place; but doctors diminish and minimalize this by saying there’s nothing wrong because nothing is off… yet we can go for the same test an hour later and it could be totally off.)
As I began stilling my thoughts more, I began to comprehend why I was getting the treatment I was receiving. I realized that I was looking to the doctors, similarly to the way my parents had, expecting them to have the answers expecting them to fix me. It was then that I came to terms with my health. For over two and a half years, I was going to numerous doctors. I had herniated discs, bone spurs in my knees, difficulty with the doctors not being able to stabilize my thyroid, 40 pounds of edema and more. On top of it, I was taking very large dosages of almost six medications to help me sleep, to lose water, to balance the thyroid and nothing was working. Dosages kept increasing but nothing was being healed. Yet, all my doctors whom I did trust indicated to me that while I was in very bad shape, everything was reversible everything could be healed through proper exercise, good nights of sleep, my diet and nutrition
It was up to me to take responsibility for my own well being, to eat and rest properly, to learn how to distress, to carve time for myself, to nurture my own health and well-being to take responsibility for allowing the stresses of work and caregiving get the best of me. No one else could do this for me.
In the past fall, I was finally balanced for almost three months. I began to lose weight, feel less tired, and slept more. My emotions even seemed more in control. And when least expected, my mother passed on. Yes, two years ago, I remember asking the doctor, “shouldn’t we call hospice?” But my mother kept rallying like an energizer rabbit. Needless to say, the shock threw my thyroid into havoc once again! However, this was the worst relapse. Coupled with the grief of my loss, the stress of having to probate her estate, the lawyers, courts, accountants etc. all of this with absolutely no assistance from my brother or mother’s siblings, I not only burned out, I had hit bottom.
I was being torn between running NOFEC, maintaining the web sites, helping the other caregivers or saving myself. While I thought I had control of so much with my mother, etc., I realized I had had no control over what was going on within myself. I had to take charge like I never every had before. I was drowning and needed oxygen. This was my time to redefine who I was; to reclaim my life; to nurture and care for myself and put everyone first after myself. This was probably one of the most difficult challenges that I have ever had to face to date.
My mantras became: “new beginnings,” “new chapter,” “it’s my time;” and “after me you come first.” I walked a labyrinth repeating these words with such pain in my knees from the bone spurs that were discovered and the 4 herniated disks in my lower spine. The pain from walking mindfully through the circles of the labyrinth over the slanted hill in which it had been designed brought me to tears - but I walked and pushed myself through the labyrinth, knowing that I was determined to make a declaration and reclaim my life. I even felt as if my mother was pushing me from the other side it was as if she was my cheerleader… I remember not wanting to turn around and complete the walk. I just wanted to cheat and cross over the rocks and leave but some thing from within turned me around and I returned the walk to the entrance, feeling less pain and so much stronger.
I found my patience and tolerance for other caregivers who would write to me, limited. My sponge was filled with all the pain and emotions I had been taking on from everyone else. I no longer could listen and put anyone else before myself. I needed to heal on all levels. One woman who had been encouraging me to take time off for me to heal, wrote me to complain of her own pain at the fourth loss of someone in three months. She never bothered to ask how I was feeling so I wrote her and said I was sorry she was hurting. I also told her that I was hurting because she had said she understood what I was going through, but truly didn’t or she wouldn’t have written to me. She blasted me for not being there for her. I felt so bad but I couldn’t put another person’s feelings a head of my own at this point. It was like trying to pull blood from a stone. I was purely depleted.
I spent several days in meditation. I remembered when my husband was alive - we put him on a detoxification cleanser to help cure his arthritis for a month. It had worked. His gnarled fingers had straightened and healed. I came out of these meditative days realizing that I was on tremendous amounts of medications. I was on 160 mgs of lasix for fluid retention and still had tons of water on me. I needed sleeping pills, and other medications. The truth is the dosages kept increasing but I wasn’t getting any better and in most cases I wasn’t even stabilized. I knew that I would have to make life altering changes in my lifestyle so I decided to go on a detoxification cleanse to heal my kidneys, liver and adrenals. I called both of my doctors and told them what I planned to do and why. Fortunately, they both understood and supported me. They would be there to monitor me as I cleansed the toxins with the cleansing program and the colonics that I had decided to take. I would need careful monitoring as I began to wean off the medications.
Within ten days, my emotions were balanced. I lost two dress sizes, had more energy, was sleeping better and had stopped five out of the six medications I was taking. I was and still am taking my thyroid medication. However, we have had to lower the dosage twice in one month. I have lost 15 pounds and am committed to detoxifying for one month and a half.
I have cut out sugars, carbohydrates, dairy and meat. Essentially I have committed to eating raw foods: nuts,.fruits, salads and vegetables and some steamed vegetables. I look and I feel like a new person.
Hindsight: I had been taking care of myself in so many ways this past decade but I never could possibly have imagined how the stresses would build daily; that I wouldn't be able to see the slow detrioration which was taking over me, even though I had been responsible. Now when I read how "stress kills," I will know how true the statement is..
My path may not be for everyone in terms of the means I used to begin healing myself. The journey of reclaiming one’s life is something we all must enforce as caregivers and equally as human beings. The ways and means to achieve it will differ for each of you, but I have come through the various roles of caregiving in my life a stronger, more balanced person who is optimistic, loving, peaceful and moving forward on my journey with enthusiasm and renewed faith. My work is my calling my mission and I love it! Gratitude has enveloped me and miracles are manifesting once again on a daily basis…It is wonderful to be alive and in the flow…My prayers are for all of you to heal in your own time and your own way.