One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Thursday, February 23, 2012

Tenacity and Taking Charge of Your Treatment

Tenacity – The Cure for Medical Mysteries

Last week I gave a serious rant about the medical community and how they aren’t sensitive to the struggles of those of us with Chronic Illness. If we don’t fit into these preconceived boxes, then they don’t want to treat us.

What I didn’t realize at the time was my frustration was tied into an inherent communion I have with my own body. Many years ago I was diagnosed with chronic hives disease. This is exactly what it says it is, a chronic condition where hives cover the entire body, itching and burning and hurting.

I started taking steroids and put on nearly 70 lbs. One day I woke up and KNEW that the hives were gone. I didn’t tell anyone this belief and tested my theory by quitting the steroids. I waited for a few weeks and when my husband said to me, “I think your losing weight,” I confessed that I had stopped the steroids because I knew the hives were gone and wouldn’t return. Now, I can’t explain in scientific way why this worked this way. However, it taught me that I knew my body better than I thought I did.

When I started to get sicker three years ago, I had a belief that there was one unifying reason why my digestive system, my immune system and my cardiovascular system were malfunctioning. I never thought I was a patient with three separate problems. I was a patient with a firm belief that I had one problem that was affecting three systems in a whole body.

This idea of treatment of my whole body based on one condition was the battleground my family and I have been fighting. I have refused to believe that these are separate conditions.  I could never confess to a doctor why I believed this. How crazy would they have thought if I said out loud, “I believe that I am experiencing one illness manifesting itself in three systems of the body, because my body tells me so.”

I would even go far enough to say I have worried constantly that I have been having some malfunction of the production of bone marrow. Not bone cancer, mind you; just a feeling that my bones didn’t work right and it was affecting everything else. Again, how do you tell a doctor, “By the way, could you check bone marrow dysfunction – I mean is that even a disease – cause I think that is the root of my problem.”

What I have learned is that my silence prolonged my illness. Because yesterday I met a new doctor and one of the questions out of her mouth was, “Why have you never been tested for bone marrow dysfunction?”

I sat stunned while she shook her head and order the test.

I have been trying to find someone to do some massage therapy for the past two to three months because I had come to believe that my body was holding toxins in my major muscle groups and if I could get a good massage therapist who could help energetically disperse these toxins, I could find relief from my pain. When my doctor said, “Your pain is being caused by a buildup of toxins in your major muscle groups.” I began to laugh hysterically. When I calmed down I explained that I had had the “feeling”  that I needed to get rid of the toxins that had built up in my major muscle groups. This doctor had the good graces to simple nod and chuckle along with me.

By the end of my appointment I was in tears, finally, a doctor had listened and taken a comprehensive history. She connected many of the dots that Tony and I have been saying for the past three years were connections to the-connect-the-dot puzzle that is my illness. She ordered tests on vitamin levels that others had ignored. She order test for autoimmune system disorders that others have dismissed as being “highly unlikely” and therefore not worth running down. She looked at the medication I am taking and immediately change my pain medication to one that I can already tell is more effective.

When, through my tears, I clung to her hand and thanked her profusely for what she was doing for my family and self. She laughed and said, “Thank you! Not many patients come as prepared as you were and that has helped me know how to help you.”

Then I learned something else, I have a hand in making things better. I told my sister last night, “I haven’t bothered doing much toward my own healing because I feel so strongly that healing comes from two directions, myself and the community set up to help heal me. Until today, they weren’t on board and neither was I.”

That statement however, is not entirely true. I have been doing what I could to try to help the medical establishment get a good diagnosis and now I have a doctor on my team and we can both work together.

So here is some unsolicited advice about what you can do to help you find a doctor that gives you a diagnosis based upon work you present.

1.   Keep personal copies of every test that is performed – especially blood test results.

Part of what helped Dr. Cynthia Lawrence-Elliott help me, was that before my appointment I had gotten together as many copies of my blood results as I could to demonstrate trends that my husband and I had noticed. By documenting these trends and presenting them together in a spread sheet. For the first time, one doctor had the blood results done by multiple doctors. The trends I was able to demonstrate was paramount.

2.   Keep copies of every test that is performed on you. If not the results, then at least the actual test names that are performed.

One of the things that frustrated me yesterday was my inability to say definitively if someone had tested for some very specific autoimmune disorders. Had I kept better records, in my own possession, and listed those test in an easy to read format, it would have further helped her to unravel the mystery of what is wrong with me.

3.   If you see a doctor and your body doesn’t like them, toss out what they have to say, keep their test results and seek another opinion

I have learned that borderline test results are often dismissed. As previously explained, however, these borderline test results OVERTIME can demonstrate what type of chronic illness a person is suffering from.  So if a doctor dismisses your results by saying that they are within the margin of error, keep the results, put them in your chart and seek another opinion, especially if your body is telling you that the doctor is not getting close to what is ailing you.

4.   Some really good doctors just don’t have the expertise needed to treat you.

I have a doctor from my last residence that I LOVE. He wanted to help me genuinely. He did not have the expertise. He was also limited to whom he could refer me to because he was part of a large health organization. Three years ago, we should have started vigilantly seeking answers outside that organization. We should have been tenacious then. He was and is a great doctor; I just needed a great doctor who understood my type of illness. Don’t be satisfied with treatment of your symptoms without a diagnosis of your illness.

5.   Keep a medical diary.

One of the things Dr. Lawrence-Elliot discussed with me was that subtle daily changes make a significant impact on blood test results. Without knowing what has changed from testing the same level on two different occasions, makes it difficult to give definitive diagnosis. For example, my kidney and liver levels have been up and down (good to bad results) for three years. The possible explanations for these level changes could be a period of pain where I took a lot of Tylenol which can adversely affect the Liver or taking too many herbal supplements which can adversely affect kidney function. A medical diary can help a doctor understand if fluctuations are part of the disorder or the environment.

Your medical diary should include:

·       A detailed, dated medical history starting from the most significant medical event. For me, I had hernia surgery in 1989 where it was discovered that I had had Katscratch Fever for about three months. I lost a lymph node and noticed a significant change in my health after this problem was resolved. Katscratch Fever is RARE and losing a lymph node to it rarer still. And most disconcerting was that I had no physical rash or other symptoms to diagnosis this illness, which is very, very extraordinary.

          Most of the doctors I have dealt with have dismissed this major event; however, Dr. Lawrence-Elliott immediately perceived what I had often thought was significant – the fact that I was susceptible to Katscratch Fever was an indication that even in 1989 my immune system was not functioning properly. Further the fact that I did not present an atypical case of Katscratch Fever suggested that I may not present as an atypical patient for any other disorder that may be affecting my health. 

          After you have made this up, present this to every doctor you see at your first visit and remind them of things you think are important on subsequent visits.

·       Medications you take each day – every type of prescribed and over the counter medications you take every day.

·       Major changes in your diet, exercise or environment. This includes moving from one location to another (maybe mold was heavily present in one place and isn’t in the new home). You decide to do a colon cleanse. You go from walking a few minutes a day to doing an aerobics class daily.

·       Activity level – did you do a lot of house work on Monday? How was your health on Tuesday? Look for patterns.

·       Notable changes in pain, fatigue and what proceeded those changes. Did you take an Epsom salt bath and find that made the days pain and fatigue better? Did you take an anti-inflammatory medication and the pain was better? What helped and what doesn't is one key in the process of diagnosis.

6.   Trust the knowledge you have of your body no matter what any doctor says.

They do not live in your body 24/7/365. You do. Do not allow anyone to tell you that your innate knowledge of your condition is invalid or a symptom of hysteria or hypochondrias. You know your truth and don’t be afraid to dismiss doctor's opinions who dismiss your opinions.

7.   If you think you know what is wrong with you, study that particular disorder and make a case that you can take to a physician.

I have thought for three years that I have Lupus. I had no tests to back up this feeling; in fact, the test kept saying that I was not a likely candidate for Lupus. However, the feeling that Lupus was the root of the issue wouldn’t go away. I studied the Lupus Foundation website extensively. I tried a group that supports the Lupus foundation and found their treatment of me dismissive so I tried another and found Dr. Lawrence Elliot. When I went in and she diagnosed me with things like Raynaud’s phenomenon, I knew what she was talking about and knew that I had already suspected that I was having this particular symptom. It helps me have faith in her treatment of me.  I may or may not have Lupus but at least I can believe that this doctor is coming to conlusions that my own research has lead me to.

Additionally, I knew I had been diagnosed with Dsyautonomia and was lead to believe this was largely a cardiovascular disorder. After reading up on this particular disorder I began to wonder if it was more a dysfunction of the autoimmune system that affected the cardiovascular system. Sure enough, Dr. Lawrence Elliot change my official diagnosis to “Autoimmune Autonomic Dysfunction.” She has been treating this particular disorder for years working with Vanderbilt University and the Mayo Clinic’s by sending patients and preparing patients to go and participate in studies and research.

8.   If a doctor in passing says something like, “Well I could recommend you go to XYZ University where they have a specialty group for your rare condition, but it won’t do you any good.” Disregard “it won’t do you any good,” and make an appointment at XYZ University.

It was first suggested I go to Vanderbilt nearly five years ago in nearly the exactly language as above. I can only imagine that my state o health would be much different if I had ignored the doctor’s advice after he said BUT.

Dr. Lawrence-Elliott suggested Vanderbilt University in the first ten minutes of my appointment after finding out my diagnosis for Dsyautonomia (Autoimmune Autonomic Dysfunction) and was excited that we had already gotten an appointment. She was also eager to help me prepare by having some test done before I am sent to Vanderbilt.

9.   If you are an adult survivor of extreme child abuse (sexual, physical, emotional, mental) or have been diagnosis with Post Traumatic Stress Disorder for any reason or have had a significant history of drug and alcohol abuse, recognize that these experience can affect your health. HOWEVER! These are not the root reason for an illness.

 I have met doctor after doctor after doctor who have pointed to my mental health issues as proof that my physical ailments are “all in my head.” Now they don’t say this directly and I still leave with a sense of inadequacy that if I was mentally tougher then I would be well.
This view of the body is only partially correct. Dr. Lawrence-Elliott heard about my past trauma and the number of years I suffered directly from that trauma and said the most liberating thing a doctor has ever said to me, “Constant stress on an individual makes you more suspetible to autoimmune disorders and we are beginning to find this to be scientifically true through research.”

This is not to say that seeking treatment for PTSD, mental health issues, and/or addiction should be disregarded. On the contrary, if you are seeing a psychiatrist and a therapist and your doctor still contends that your physical health is caused by your mental health…it is my opinion, they are copping out.  It is easy to blame the victim of mental illness or past trauma and abuse for every problem they currently have. This does not make it true.

10.                     Screen your doctors before you go to their office

I have had great success in asking questions about the medical opinions of doctors before I go. For me, the question was, “Do you believe that you cannot have Lupus if your ANA test is negative?” This was crucial in my treatment. I believe I have Lupus if they needed an positive ANA test I knew I wouldn’t be able to give it.
Decide before you make an appointment what medical opinions your doctor needs to have for the two of you to see eye to eye. Make the receptionist find out if she doesn’t know. While you’re at it, judge the doctor by the staff. Are they sympathetic? Are they helpful? Are they too busy to take time for you. All of this information will give you some insight into the doctor they work for. I was gaining confidence in Dr. Lawrence-Elliot before I stepped foot in her office because of the phone interactions I had with her staff.

11.                     I am not a doctor, neither are you.

So take what I say as observations from someone struggling with disability and finding her way to health again. At some point you have to find a doctor you can work with and then do the work. You may not like to change your eating habits or let go of your soda or committing to an exercise routine even when it hurts; however, if you are confident that your doctor is doing everything they can for you, you have a responsibility to do everything you can for you!
Further, doctors are not the persons ultimately responsible for your wellness – YOU ARE. Listen to your body. Refuse to take answers that do not resonate with your own body. Find a doctor that will partner with you. Keep a medical journal. Keep your own medical records. Take treatment for any mental challenges you may suffer from. Most importantly be tenacious.

Be a person whose very livelihood, well being, health and happiness are on the line. Fight for it. Shake the proverbial bone until a doctor listens to you or you find the perfect doctor to assist in your movement toward health. Do not take no for an answer. Do not sit and lament your situation. Do not throw yourself pity parties. Do something everyday towards unraveling the mystery of your sickness and finding the map to your wellness. Refuse to be reduced to little boxes. Be tenacious.

NOTE: The above information has not been verified by a doctor and therefore should be taken as opinion NOT fact. I have referred to Dr. Cynthia Lawrence-Elliott, MD of the North Georgia Rheumatology Group, PC in Lawrenceville, GA; 770-822-1090. For my family she is heaven sent and we are blessed to have her on our team now.

PERSONAL UPDATE: For now my diagnosis is the same “Dsyautonomia” or “Autoimmune Autonomic Dysfunction.”  Other test are being run and as I understand more about my illness and how I will recover I will pass that information along. Thanks for your continued prayers and support.


  1. I can relate to this so well. I have several "invisible" diseases. Getting diagnosed, treated, medicated, and maintained is a constant struggle. I do have a doctor who listens, but the burden of my treatment is on me. I learned from the start that since this is my body, and I am the owner, operator and tenant of it, I must also be it's caretaker. In that I mean that I must learn about my diseases, the treatments, the symptoms, the side effects, the prognosis, etc. My doc is very obliging. she will adjust or change any meds I want and need. But she also has many other patients. I have but one body. So I research, like mad, and weed out what I thing/know won't be of benefit to me. I cannot tolerate certain meds that I may need. I cannot take steroids, or statins. But I still need to remind her why I am not taking them for my allergies and my high cholesterol. And like the article says, I listen to my body, all the time. So I know the changes, the good and bad, that are going on. I am disabled, from the diseases and from being run down by a car. This has made me more aware, since I am not able to work, I am home with little to distract me. But as someone tole me this week, I am more than my pain. It is not who I am, it is but a small part of me. Granted some days it is a bigger part than I would like. But there is much more to me than the pain, the limp, the meds, the diseases. And so I now an on a quest to BE more of ME. Since I just broke my ankle and had to have it surgically repaired, and am in a boot, and using a walker, my quest has been put off for a few months. But I am still determined to be a whole individual, inside this body that is betraying me at every turn. )O(

  2. I am so glad you are taking charge of your situation and pushing through the turmoil. it is empowering to read your blog and know that with hope we can find some answers. I am very happy and proud of you. Keep pushing and keep writing.

    Love ya