Sunday, October 18, 2009

001 Taking ASI Test and CFS Book

October 18, 2009

I've decided to keep a diary (Daily Post) of how I am doing with the Chronic Adrenal Insufficiency. I'll post the whole story in one long post later and then go back through the years as to what was happening to me from age thirteen on as I find time to sit and work on this project. I have an email into my mother right now who knows which year it was I had mononucleosis which I'm seeing as a possible link to when my immune system started weakening. I believe this can be traced back to about age eleven to thirteen. That's when I started having kidney problems, the mononucleosis (but still need an age on that one), and, of course, when puberty happened - oh joy!

I've found Chronic Adrenal Insufficiency is also called other things: Hypoadrenia, Chronic Fatigue, Adrenal Fatigue, and Addison's Disease, with it being diagnosed about a hundred years ago as Asthenia, but since our medical doctors in the U.S. don't know what to call this neurohormone problem yet, I'm just going to go with what they call it for now: CFS (Chronic Fatigue Syndrome). Feel free to click on the words that are highlighted. I am trying to cut down on the length of posts so it may be necessary in order to understand what is meant by terms to click on the actual words.

Today, we are testing to see how much my adrenal glands are producing cortisol. Back in February of this year, I was tested by ZRT Labs and results show low cortisol and low thyroid (T3 only) so we finally have it figured out as to what is not working in my body. What is working is still questionable! Of course, we are hoping that my adrenal glands can restore themselves and my doctor, Dr. Andrew Neville, N.D., has told me that after I do the ASI Test and start the therapy he suggests, he believes in one year, I will be pretty functional. At this point, I'm still unable to even walk all the way down to the mailbox and back yet, but can do the dishes and pick up the house about five days a week now. I've also had some better days since the end of September and have been able to ride in the car to the store with my husband. This is really good!

So today is the big day! With the ASI Testing, they require me to do in-home saliva testing for morning, afternoon, evening, and midnight. I did the first one this morning at 6:45 a.m.

I also received my book, Chronic Fatigue Unmasked 2000, written by Dr. Gerald Poesnecker yesterday which is very informative about this disease. You can read one chapter online called The Nature of the Condition to get a little better understanding of adrenal problems that cause CFS.

I'm not yet sure if I should called this a syndrome, disorder, or disease at this point. It depends on who is talking, I suppose. Most doctors in our day don't understand it, so it sits on the shelf while they tell their patients to go see a psychiatrist. I realize doctors are doing what they can, what they are told to do, but to send a patient to a psychiatrist for a biological, neurohormonal problem is not helpful. In fact, it can be very harmful as it was for me (I will post about this in upcoming days). It just doesn't work to not test patients who have severe anxiety, fatigue, shakiness, confusion, hypoglycemia, etc. for endocrine problems and to tell them some common things I've heard:
  • You need to think more positively
  • Maybe exercise more, take some walks or take up jogging
  • You really should just pull yourself up by the bootstraps (as one doctor I had said, "next time someone tells you that, tell them they don't make bootstraps anymore." I have looked up the actual definition of what it means to pull myself up by the bootstraps. Here it is: "to succeed only on one's own effort or abilities." So in other words, when I was hurting for help, they were saying, "no, pick yourself up."
  • You should go out and get some fresh air and have a little fun in life
  • Maybe you need to start a hobby
  • You sound like a hypochondriac; maybe don't look at the PDR and concentrate on something else (one doctor threatened to not refill my prescription if I don't stop reading medical material that is for "doctors only" as she stated in Columbus, Ohio)
  • You have four suicides in your family, so you probably will do the same (Nice! That's my all-time favorite from psychiatrists when they don't know where to turn, but to leave someone in a hopeless state)

Now I ask, would this be good advice for someone suffering with cancer or any disease for that matter? No. A few of them might be helpful, but won't cure the actual disease, wouldn't you agree? In all the years (twelve total), not one doctor ever tested my cortisol or thyroid levels, never helped me learn about hypoglycemia and what is happening with my brain without glucose, but put me on many (many!) medications which has compromised my immune system and adrenal glands even more. One of the medications I'm still taking which has completely messed up my HPA Axis has many side effects I have to deal with daily. I've been seen by so many doctors and psychiatrists, I can't count them, and like I've said before, they are all fired due to incompetence.

With all this said in my first post on the matter, I don't think what I have is Addison's Disease because in February, my test results showed some cortisol in my body, so though my adrenal glands are misfiring all the time, shooting off too much epinephrine (read adrenaline) causing severe panic and anxiety, blood sugar problems, body weakness, insomnia, body pain and such, it seems the glands are making some cortisol, but we'll see when I get the results this coming week.

I'll be giving these daily posts different titles, but will number them so they are easily accessed. To help search in sequence, I'll mark them with a number starting out with 001 as seen in the top of the post and they can all be found under the TOPIC "Daily Post." My reason for doing this daily (or as often as I can) is not only to help myself remember what has been helping me, but I hope this will reach men and women along with mothers and fathers who want to learn about CFS for themselves, other loved ones, and their children through this little diary. If you have suffered the heartache of family and friends not understanding what you go or your loved ones endure and have had that label of "hypochodriac" or "lazy person" put upon you, I know the struggle. I pray almost daily for the people out there who don't know where else to turn and it breaks my heart. I hope I can help some with giving resources like the links in my posts so they can figure out with a doctor's help if they too have adrenal problems that have been misdiagnosed.

My other blogs can be found HERE and HERE.

Coram Deo,

Tamara Slack