December 01, 2005

I have the diagnosis and now the real adventure begins. Well, it began awhile ago. I was diagnosed in the fall of 2001. (I hear the 2001 music even now!) And it has been an adventure ever since. Not always a good one.

Those days I wake up feeling like something the cat wouldn't drag in, take my cortisone, and within 20 minutes become a human being, are wonderful. But to be honest they are few and far between. At first, they were more common than not, but cortisone has a way about it. It is a double edge sword. It is necessary for life, yet having to take it, even as a substitute has side effects; nothing works as well as Mother Nature.

Four years later I am fighting cataracts and I find it frustrating to be dealing with a sense of visual loss at such a young age. Now I know that there is surgery for this but that is also something someone with Addison's doesn't enter into lightly. Many doctors feel that you only have surgery when there is no choice. Vision is a fine line. For now it is an inconvenience and I don't have to think too much about it, but someday it will come up in a way I can't ignore. I don't look forward to that.

The other side effects of the cortisone have been bone density loss, susceptibility to illness, vulnerability to accidents and simple things that don't slow most people down and the unseen problems of heart disease, which I don't appear to have, but who knows? I have shrunk two inches in the past few years. My spine gets shorter and shorter as the disk space narrows; cortisone only accelerates that process. But without the cortisone, I would only live a few days and I guess that would be considered an acceptable trade-off. I wonder if I will end up looking like a hobbit.

On the plus side, my nails are like they used to be. Hard, strong, growing... hair is thick and looks great, and I can time my cortisone to match my schedule. Being an artist, I can work the hours I want, so I get up when I please and go to bed when I please and I don't have any problems with my schedule because I control it with the regularly timed doses of cortisone.

But people with Addison's, or Addisonians, have other problems. We are more susceptible to other autoimmune problems. My others seem to be Celiac and Meniere's Disease. They both started recently. I'll talk about Meniere's next time. I am so very tired and I haven't even begun to go through the list of what this disease has cost me.

Anyone who thinks a normal life can be lived with Addison's just doesn't get it. They have never had it, never known anyone with it, and don't care to learn any different. Some day I'll go into some of the facts about President Kennedy. He got it. And I just don't know how he ever did what he did with what he had.

Posted by Addison at 02:34 AM | Comments (0)

November 24, 2005

The gout of course resolved. Interestingly enough, it never reappeared. It was a one-shot deal and that is unusual for gout or gouty arthritis. It was a fluke but it was a fluke that saved my life.

After the gout was over and I could walk and felt better, but worse without the prednisone anymore of course, we began looking at diagnoses. What were the possibilities? MS, Lupus, Lyme Disease, a connective tissue disorder, chronic fatigue syndrome… it was a long list. The blood tests began and one by one we ruled out things. I met every specialist there was and there were no conclusive answers. We found out what I didn’t have: I didn’t have lupus, I didn’t have MS, and I didn’t have rheumatoid arthritis. But I felt like something the cat dragged in all the time, unless I had prednisone.

The doctor who diagnosed the gout was suspicious about Lyme Disease and was concerned because if I had ever had it, it would never show positive on a test due to the length of time. He tested anyway, and although he believes I had it, has not documented it due to the testing showing negative. I did however have a reaction to the antibiotics which gave it all away: Right after starting those horrific doses of two antibiotics, I developed the characteristic bulls-eye rash on my arm. Obviously a tick and I had been intimate (without my knowledge). But it didn’t solve the problem. It helped some of the symptoms but being that I had Lyme Disease for who-knows-how-long, I do have some of the long-term effects of that problem.

The neurologist who determined I did not have MS didn’t have the vaguest idea what was wrong but agreed with my doctor that something was indeed not right. So off to an endocrinologist I went. That is where the story should end but it didn’t. This physician felt that because I wasn’t underweight (and in fact had a few extra pounds) that Addison’s was an impossibility, especially adding in the fact that I was hypertensive. People with Addison’s are supposed to be thin and have hypotension. He failed to consider that other diseases, disorders or syndromes can cause conflicting symptoms. But he pronounced me Addison’s-Free and sent me on my way.

We were back to Chronic Fatigue Syndrome. I was frustrated, my doctor was frustrated, and there seemed to be no answer. I would have settled for the CFS if prednisone didn’t fix it - but steroids don’t have that affect on CFS. And CFS wasn’t my first choice, although I had no idea what my first choice was.

The doctor at that time took his “Merck Manual” home and began studying. He is not an endocrinologist but was willing to try to search this out to preserve his sanity and mine as well. He was convinced I had Addison’s and that the endocrinologist was in error and set out to prove it.

The blood work began and upon retrospect, it was so easy to do, that I am amazed it wasn’t done immediately. I went into the office at 8:00am and had one draw and returned at 5:00pm for another. That was it. The levels indicated adrenal gland function was nearly absent. There was virtually no cortisol in my system in the morning at all, and just barely enough to function in the afternoon. But, being hypertensive was not making sense so he ran the test three times; the levels were lower each time, which had me worried because I wondered how low it would go before a crisis set in.

After the tests proved conclusively that my cortisol had gone AWOL, the doctor ordered a 24 hour urine collection to back up the blood work. It also showed the absence of cortisol. I never had the test where they inject the hormones to see if it is primary or secondary because of the sodium levels being so low and the potassium levels being so high. The tests also showed that the pituitary gland was functioning normally, and in fact was in overdrive producing the hormone that signals the adrenals to release cortisol, but nothing was happening.

It was official. I was diagnosed with Primary Addison’s Disease, put on hydrocortisone and the next day, when I woke up and took my cortisone replacement for the first time, I felt human. I couldn’t believe it.

Lest you think this story is over, it is just beginning. Addison’s changes your life and if other things happen in your life, as they tend to do, it can complicate your diagnosis and make everyday living complicated. I still had many obstacles to overcome and many problems heading my way. It is said that an Addisonian can live a perfectly normal life, but whoever said that didn’t have Addison’s and has never met anyone with it. This is as far from perfectly normal as I can imagine. And those experiences on this journey are what I will be sharing with you as time goes by.

There is nothing normal about having Addison’s and if you have it, or someone you love has it, you need to know what is going on and how you can help. What they are experiencing is real and “normal” isn’t going to happen again. But the good news is that, “good enough” will happen if you learn to let it. It just is a tough road to travel.

Posted by Addison at 04:47 AM | Comments (48) | TrackBack (0)

November 20, 2005

But of course, that wasnt the end of that. Prednisone has a fairly long half life, relatively speaking, and soon the effects of it had worn off. The really bad part was that at the same time I was receiving what was life-saving cortisone, I was receiving it at therapeutic doses for an illness, not at a replacement dosage that would be used in Addisons. So I was over medicated and that only made the underlying Addisons worse.

I went through cycles of this over and over again. I developed what they believed to be adult-onset asthma and was back on prednisone. Then cycles of bronchitis. Fatigue and more fatigue - crushing fatigue. I had irregular heartbeats, skin problems, my skin was darkening (although that wasnt noticeable to the physician because I was so incredibly fair-skinned and I looked normal) and to make matters worse, and to throw the diagnosis off even more, I developed severe hypertension and a slight weight problem. Now that is not typical for an Addisons patient. Addisonians are thin - very thin usually and tend to be hypotensive, not hypertensive.

So it was all in my head. It was anxiety, it was depression, it was hypochondria, it was OCD.... It was always something other than something real. And that took me to the point of believing that myself. I soon believed I was as nuts as they thought I was. I took more medications for depression and anxiety than someone who legitimately has those conditions takes. I would have gladly accepted the diagnosis if I had believed it but I didnt. My body only felt well on cortisone and it was as simple as that.

A few more years rolled by. I dont know how I did it, but I continued working, I continued living my life, but I became more isolated. I was so tired, too weak and too disinterested to do much more than was absolutely required of me. But I had a huge social event coming up that I could not possibly excuse myself from, so I had to rest up for a month before and do the best I could. It required travel; a few days of meeting, greeting, dancing, eating... all of the things people love to do. All of the things I used to love to do. When I returned to New York I suddenly broke out in huge lesions all over my legs. The bronchitis was unbelievable. I was so sick. I had the flu, I thought, like no flu I had ever experienced. But the doctor said it wasnt the flu. At least he was honest enough to tell me he had no idea what was wrong with me but suggested I see a rheumatologist. At least we had a plan. I just wish he hadnt laughed me off - it felt very belittling and I often wonder if he would have said that to a man.

So off to the rheumatologist I went. I saw a woman who specialized in rheumatology and I was convinced I would find the answers I needed. I had an exam, no blood work because of previous blood work at my physicians office, and was pronounced nuts. Well not really, nuts. But she might as well have said that. She did say, Everyone feels good on prednisone. Its like a high. I tried so hard to explain it wasnt a high feeling and that it made me feel normal but she didnt listen or didnt want to hear it. I left with no more information than I had before I went.

Interestingly enough a few months after that, I had a terrible pain in my foot. This was clearly not related to anything I had had happen in the past few years. It was a sharp pain on the top of my foot and I thought I had broken a bone. It refused to get better, which is the hallmark symptom of a break, so I finally called the doctor. He was gone for the week, thank goodness, but a new doctor in the clinic was willing to see me. I had wondered what he was like and being that I was convinced it was a break, I decided to see him. At least I needed a brace or something, and definitely something for the pain.

He diagnosed me with gout. Gout???? What the heck and where the heck did that come from? Incidentally, I never had it before, and Ive never had it since. It was as if this gout diagnosis dropped in to signal this doctor. And of course, guess what the treatment for gout is? You got it. Prednisone. So I explained, for what I silently vowed would be the very last time about the prednisone, how I felt, the CFS diagnosis, the mental diagnoses, and dumped the whole story on the doctor. He was interested. And I was interested in his interest.

He told me that we needed to resolve the gout and he promised to get to the bottom of the problem. So his research began, I began the prednisone, which made me feel 100% better again, and we began our final journey to diagnosis.

Posted by Addison at 12:45 AM | Comments (74)

November 15, 2005

I always thought that a person’s name was interesting. It used to be that surnames were determined by a person’s occupation or some characteristic about the family. For example, people who crafted shoes became the “Shoemakers.” (I wonder what happened to the guy who cleaned up after the cattle - let’s not go there.) Coming to the point, did being named Addison with the last name of Kennedy seal my fate. Was I destined/doomed to have Addison’s Disease? And while we are on the subject, and if we aren’t, let’s get on it, why on earth do doctors say that if you have Addison’s you can live a perfectly normal life?

As all good stories do, let’s start at the beginning. A real “once upon a time,” type beginning. The only way to tell a story is to start at the start and end at the end; I don’t have an end for you, and I don’t plan on having one for quite some time, but I can give you the journey. If you happen to be on that journey, you’ll recognize the path.

Once upon a time, I was as healthy as anyone could wish for. I was active, busy, intelligent (hopefully I still am), overloaded with activity… life was everything a woman living in busy, thriving New York City, could ever want. I am unmarried and have no children so my life is my own. I was, and am, an artist and I have many hobbies that do not veer too much from my way of earning my keep in this world. It is no exaggeration to say it is wonderful to live in Greenwich Village if you are an artist.

I don’t remember when it all happened. That is one of the things Addison’s Disease took from me. Memory. I have big blank spots in my head where memories of my life used to live. I just remember that I used to be well. Very healthy, very well and then I just wasn’t. I think I vaguely remember getting sick with some mysterious flu-like thing; I was really, really sick and to complicate matters I came down with a secondary case of bronchitis. I have never coughed so hard in my life, before or since. I actually hurt my back coughing! But that bronchitis probably saved my life.

When I developed the secondary infection, the doctor I was seeing assumed it was the flu or something close enough to it that it didn’t really matter. The bronchitis was almost a relief to him because a bacterial infection can be treated. I was prescribed antibiotics and large amounts of prednisone to treat the wicked coughing attacks. After a short time, very short time as I recall, I felt 100% better. I took the prednisone for a few weeks, tapering the dose down as I went and that was the end of that.

But it was odd. I never got my energy back. I found myself getting tired so easily. It was as though I had some little vestigial flu that didn’t want to go away. The doctor thought it was just one of those viruses that is hard to shake and dismissed it for the most part. The interesting part about insidious fatigue is that you get used to it. Slowly, over the months, which turned into years, I became used to feeling fatigued, tired, and just plain shot.

Looking back, the signs are so clear. Isn’t it amazing how easily we all can see in retrospect? They say hindsight is 20/20 and I think that is right. Tomorrow, I’ll post about what happened next; chapter two if you will. It is an interesting story because Addison’s Disease creeps up on you slowly. It can take years to diagnose. It took me 10 years to get the diagnosis. It is somewhat of a miracle that I didn’t die in the process.

Oh, the irony? Well, the Addison part is obvious. The Kennedy is the real irony because only about one in 100,000 people have Addison’s Disease and President John F. Kennedy was one of them. There is even a theory that had he not had Addison’s, the assassination would not have been successful in 1963. Interesting. I’ll explore that theory later too.

I have been looking forward to sharing this story for a long time. And the story continues to unfold. Thank you for joining me on this journey.

Posted by Addison at 02:25 AM | Comments (52) | TrackBack (0)