My Story

I guess the time has come to tell you my story. So, grab yourself something to drink and put your feet up. Since this did not come about over night, we just might be here for a while. So, make yourself comfortable and let me get started.

I guess it all started in April of 1977. I had just given birth to my second, of what was to be three sons. He was perfectly healthy, weighing in at eight pounds twelve ounces. Then all of a sudden the atmosphere changed. The doctor started barking orders while the nurses started hustling about following his orders. I remember thinking I've seen my baby and now I'm going to die as they ushered my husband from the delivery room. [Now, I need to explain that the man I am referring to as my husband in this story is no longer my husband.] As it turned out, it really wasn't any big deal or that's what I thought later. It seems I wasn't clotting and they were having a hard time getting the bleeding under control but in short order all was normal. Looking back, there was just no way of knowing that was the beginning of a soon to be growing list of medical problems I would have.

For the next eight months I found myself having more and more complaints. I'll call them complaints because I didn't know they were all symptoms of a major medical problem.  The first thing I noticed, as most women would, was that I was not losing any of the weight I had gained during my pregnancy. Now, to be honest, I had gained better than fifty pounds just as I had with the first pregnancy. But unlike the first pregnancy, I did not effortlessly lose all that weight within the first three weeks. So, my first thought was to say it's harder the second time around. That's what everyone else was saying too, so why not? I started to diet and exercise but to no avail. I had lost no more weight than I had on the delivery room table. In fact, it seemed I was gaining.

Okay... so I shoved this complaint aside and started to adjust my thinking. At the same time, it seemed my energy level was dropping and it seemed to be daily. Even though I was only 22, I was tired but, was it no wonder? I did have another child... two babies now needed my attention. My oldest child was around two years old and the baby was now just a few months old. I was still breast-feeding him so I wasn't surprised to find that my menstrual cycle had not resumed yet. That was one of the few things I did not complain about but it turned out to be a symptom too. My sex drive had completely diminished but I shrugged that off as a decrease in energy.

Now is when the other symptoms started to come into play. My hair was falling out, not like someone who is getting chemotherapy, but falling out nonetheless. In certain places I nearly went bald and it has never re-grown to this day.

Along with the hair changes, my skin was changing too. It was drier, itched tremendously, and grew paler as each day wore on. And that's exactly how it felt as I went about trying to lead my life.

As my list of complaints grew, my energy waned. It was now becoming difficult for me to make it from my living room to the bathroom without having to sit down and rest... that's pretty bad considering I lived in a standard three bedroom tract home at the time.  I had to sit down and rest on that journey from living room to bathroom for two reasons.   First, if I hadn't, I'm sure I would have ended up there when I passed out. And, second, I didn't have the strength to take another step.

Now, when you have no energy it is natural to think being cold would go along with it. So, I ignored that complaint too... at first. Then one day it dawned on me that nobody was wearing their winter coat but me. Looking around it didn't take long for the reason to become apparent. It was now either July or August in California and the temperature was in the high 90's to low 100's. That little realization hit me like a ton of bricks or should I say like a snowball in my face. I was freezing like there was a foot of snow on the ground while everyone around me was enjoying the summer.

Enjoying the summer, now that was a concept I could not visualize that year at all. When on the few occasions I had the energy to do something, I couldn't really enjoy anything. There was always the ever increasing housework to do because I always ran out of energy long before I ran out of work needing to be done. Should I mention my husband is not taking this at all well? Probably not, in fact, he is in total disbelief. He thought I was making it all up and was now just living a life of laziness. OK, enough of that.

So, now not only am I having all these complaints I've mentioned and the problems they created, I am now having problems with my hands and feet. I could no longer do anything that required repetition without my hands and feet going to sleep. That's not exactly how it felt but that's the only way I know how to describe it. Now, I'm not talking about hours of knitting or cross-stitch, which I truly enjoyed, because it actually took less than five minutes.

Five minutes.... I was living my life in five minute increments. After five minutes of driving, I would have to change which foot was on the pedal. Or after five minutes of writing, I would have to put my pen down and dangle my hand until the feeling and blood returned to it. So, now even activities that required little to no energy caused me enough problems I could no longer enjoy them.

So, here I am with all these various complaints, that in my mind are either excusable or not connected, so I don't think it is necessary to contact a doctor yet. That thought changed the day I woke up so dizzy I could not stand up. You will never know how happy this made me because I just knew this was an inner ear infection and a doctor could fix this.

Now, dizzy as I was, physically as well as by the prospect that a doctor could possibly help me, I picked up the phone and called my doctor. My doctor... the effect of those two words have a totally different feeling today than it did twenty-two years ago. Funny, but it was almost twenty-two years ago exactly when I was twenty-two. Wow, I have been sick half my life!  What a realization!!!

[Of course, this was true in 1998, but it is no longer true. I have been sick MORE than half my life. So long in fact, I have no idea what normal is any more. If you read on throughout the site you will learn that not only do I not feel sorry for myself, I know there are many others in far worse shape. I am just stating the facts here.]

Anyway, back to the past. I called the doctor and spoke with his nurse. After telling her how I was feeling, she kind of giggled and said she was pretty sure she knew what was wrong with me. I immediately corrected her by telling her I was NOT pregnant. Naturally, she disagreed and then scheduled an appointment for me to see the doctor.

The day came for that first doctor's appointment, the first of many more to follow. It was really touch and go there for a while if I would make it to that appointment. My husband was still in disbelief. He refused to accept my word on just how sick I really was, so I had to get myself to the appointment. While driving myself to his office, my foot kept falling asleep. It got so bad at one point I had to pull over on the side of the road and let my foot rest and get the blood moving again. Once I got there, there was the walk to get inside. I didn't think I would ever get where I was supposed to be. It was like some surreal cartoon where every step seem to take me further away rather than closer to that office door. The distance seemed incredible and the journey exhausting. Eventually, I had to just give up and sit down right in the middle of the hall until I was able to continue. I am proud to say I did eventually reach his office that day.

After spending what seemed to be an eternity in that waiting room, I was ushered into the back and into an examination room. Once there, the nurse checked my vital signs. They weren't very good. My blood pressure was somewhere around sixty over forty. My temperature wouldn't register so it had to be taken rectally. It was not 98.6 as it should be but 96.8. My doctor was considering admitting me into the hospital for hypothermia but I was able to talk him out of it since I was still breast-feeding. I must admit he did seem genuinely concerned... baffled but concerned. He didn't know what was wrong but he was sure it wasn't an ear infection. After assuring me he would figure it out, he ordered some lab work. Once the blood was drawn and my return appointment was made, there was nothing for me to do but go home and wait for the next appointment.

The return appointment never materialized. What did materialize, however, was a telegram from the doctor stating simply, but urgently, to come to his office. NOW! I really didn't want to go that day but I was too intrigued not to. I had never received a telegram before but I was so busy. It was now December and I was attempting, though agonizingly slow, to prepare for all of us to fly from California to Washington, DC the very next day to spend Christmas with my parents. We had not seen them in a little over two years and they had not seen their newest grandson. But I stopped what I was doing and went to hear what the doctor had to say.

Although I had to go through the same difficult trip getting to his office, it wasn't long before I was hearing all too well what the doctor had to say. Once inside the office, everything else was different. I went up to the check-in window and told the receptionist who I was. Before I could do anything else, she asked me to wait one second. She returned shortly with the nurse who immediately took me into the exam room. She took my vitals and they were slightly worse than the previous time. Then she led me into the doctor's private office. I wasn't there long before the doctor was there. This is where life as I knew it changed forever.

As I write this, it has caused me to look back and reflect and the one thing that stands out the most is how little knowledge or control we have over when life changing events decide to happen. You can't take the moment back and no amount of wishing will change it. It wasn't these particular thoughts that were going through my mind that day, but close.

I was really interested in what was going on, that's for sure. However, the answer came sooner than I really wanted to hear it though. What I heard was they knew what was wrong with me and called it Addison's Disease or Sheehan's Syndrome and hypothyroidism. I had no more idea what that was, than probably most of you, so I asked. His answer, though in retrospect was an exaggeration, scared me more than anything I had heard up to that point in my life.

He told me the clinical DEFINITION of it, which I won't go into here but you can find in the diagnoses section of my site. Anyway, it was just a bunch of doctor mumbo jumbo to me. When I asked for it again, but in plain English this time, he said, "Your thyroid gland, adrenals, and probably your pituitary gland have stopped working. You'll have to take medicine to replace it for the rest of your life. Any reserves your body had are now gone so you have essentially no cortisol in your system. This is very dangerous and a simple cold can kill you. I have a room all ready for you at the hospital and you need to be admitted now and you'll have to stay anywhere from ten days to two weeks." I WAS floored! I told him in no uncertain term that I could NOT, would NOT be able to go into the hospital now because I was flying out of San Francisco International the very next day.

He excused himself and left me to my own thoughts. And then it hit me. The tears started rolling down my cheeks as I looked out his window thinking how unfair this was. I was only 23. I had two small children. And how in the world was I going to keep from catching a cold for the rest of my life. The rest of my life ... it didn't seem to be as long as it was before.

Well, I don't need to tell you I am still alive. And I'd be lying if I told you I hadn't caught a cold in the last twenty-two years either. Colds, as well as other normal ailments, are hard on me but with the proper regiment I do get over them eventually.

Anyway, I digress. When he returned from his conference with the other physicians, he told me they had it all figured out. I wasn't sure what he was talking about because as far as I could see there wasn't anything to figure out but I asked anyway. To my surprise, he told me they had it all figured out how I could still go on my trip but I had to be admitted now. I'm not sure when that decision had fallen into their laps and I was just about to tell him just that when I decided there must be some reason for the urgency and reluctantly agreed as long as he promised I would be on that plane the next day.

Less than thirty minutes later, I found myself dressed in a hospital gown laying in a hospital bed. I was in a teaching hospital and in the next 18 hours that I was there, I told my story to at least six different interns who also did the typical assessment as well. By the time the last one came in, around ten o'clock that night, I wished I'd had a tape recorder. [Now you know why I can still tell this story twenty-two years later.]

About an hour after I was admitted, my doctor came in. He explained to me what they were going to do and why. He told me they needed to replace my cortisol immediately, regulate my electrolytes and do this test. The reason for the test was to determine whether my adrenals weren't functioning or whether my pituitary was no longer telling it to work. I don't know why the why was important but he seemed to think it was. He then told me the best way to do that test required a time span of ten to fourteen days, but there was another way.

He wasn't exactly pleased with this alternate method but was willing to do it due to the time constraints. After explaining the basics of the test, he left and returned within the hour. I can't recall the name of that test at the moment but when I do I'll let you know. Anyway, just as he promised he returned in an hour with an entire entourage with him. They pulled the head of the bed away from the wall and two doctors stood there. There were two doctors on each side as well, along with a phlebotomist and several nurses.

I didn't know if I should feel giddy or scared from this attention. Intravenous lines were placed in both arms and then they started infusing insulin. As it infused, they kept me talking continually and drew blood every minute or so. They explained that the topic wasn't as important as how I was responding. They were using my ability to communicate as a gauge to how I was doing and I would soon understand. They were right. I don't know how long the test lasted but at one point they asked me something. And when I went to answer, the words that came out of mouth was as much gibberish as hjvlewsjoenk.

I was shocked. When I attempted to speak again, something much the same came out. The test was now over. They gave me glucose and I was normal again. Or I should say, I think that's what they gave me, but I would not swear to it. Funny thing, my brain was still functioning but I was unable to express it. Anyway, by the time I left the hospital I was about as educated as one can be in eighteen hours; on my condition, my medicine routine, and how to give myself a shot in an emergency. Armed with the prescriptions for those new medicines, I left the hospital and went straight to the airport.

Over the next several years I saw the inside of a hospital room more times than I could possibly count. It probably took close to two years before my condition was regulated enough so I could live again. I wasn't normal but at least I could function most of the time.

During those first few years, I frequently went into Addison's Crisis. This would require a trip to the hospital and an IV It was normally done on an outpatient basis in the emergency room. But, it was always amazing how well I could feel in just four short hours after getting that IV.

Eventually, those Addisionian Crisis stopped happening as often. And for the most part, my health started running on an even keel. My weight returned to normal. My vital signs improved but remained below normal. My energy level was better, not great, but much better. My hair stopped falling out. And my periods eventually came back even though I was told they never would.

Aside from the things you'll hear about later, life settled into a routine. Routinely, weeks turned into months which turned into years and I would be diagnosed with more and more autoimmune diseases. It became the normal course of events for me. None of them caused quite the reaction or physical complaints as my initial plunge into the autoimmune world though. [Well, that statement is no longer true. The diagnosis of MS has been a difficult one for me.]

I do have some significant things and interesting stories that I'll be telling you in the next few pages. Some of them are happy and some of them are sad. Some may make you laugh and some may make you cry. Some of them are focused on my life as it pertains to my medical problems and some of them are focused on the medical problems as it pertains to life. Through the reading of this story and the following stories I hope you gain as much as I did in the telling.

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You are listening to Memories from the musical Cats, written by
Andrew Lloyd Webber and T.S. Eliot. I felt this song was a perfect selection
for this site because of the affiliation I feel with Grizabella. Although for her,
it was age and not health issues that changed her, neither of us are who we
were before, on the outside, and it can affect how we feel on the inside.