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Wishing Well:

Living with Adult Growth Hormone Deficiency and Chronic Illness

By

Elizabeth Collins Wood























© 2018 ECWood

All rights reserved. No portion of this book may be reproduced in any form without permission from the publisher/author, except as permitted by U.S. copyright law. For permissions contact:

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Foreword

I can speak from personal experience when I say that most physicians do not go to medical school to treat patients with chronic disease. Television shows like M.A.S.H and ER appealed to those of us who went into medicine to “save lives” by treating acute and life threatening illness. After actually spending time holding scalpels in operating rooms, rounding on hospital wards, and treating the acutely ill in emergency rooms, I actually found the challenges met in the outpatient clinic most intriguing.

Endocrinology attracts those whose brains work a bit differently. Our challenges come in identifying diseases that often present with subtle symptoms and cause classic biochemical patterns of hormone imbalance. For us, connecting the dots and making a diagnosis is as rewarding as resuscitating a crash victim or stopping the bleeder in the O.R.

Our patients often bring baggage with them into our offices. Often there is the learned defensiveness that comes with being told “there is nothing wrong with you” or “it is all in your head”. The frustration that comes with diagnostic procedures is laborious, time-consuming and expensive. The helplessness that comes with learning that getting better may require difficult lifestyle change, painful injections or a lifetime of regularly scheduled doctor’s visits for monitoring.

The pages that follow provide patients living with chronic illness and those still struggling to be appropriately diagnosed in a very unique voice. It also serves as a poignant wake-up call to many of us physicians who have never been on the “other side” of the examination table. It reminds us of the power we wield with our words and how therapeutic simply listening can be.


Susan Jane Boston, M.D.

Mease Diabetes and Endocrine Center

Mease Countryside Hospital

Safety Harbor, FL 34695



















Introduction

The bad news, you have been told you have an illness that has no cure but it might be manageable. Chronic illness affects all of us in many different ways. Whether it’s a friend, relative or yourself it plays a frustrating role in all of our lives. It doesn’t just stop at chronic disease. It could be from any disease and to the survivor it is an endless loop of many conditions.

Having a chronic disease is certainly no fun. It's perfectly reasonable to feel shocked, anxious, and saddened when diagnosed, and depressed and irritated as you cope with your condition over time. Allow yourself to feel those feelings. Don't deny them then, when you're ready, move emotionally past them.

Having a chronic illness is often isolating, you might think, you're the only person in the world who has to spend time and energy hassling with what you have to do to take care of yourself. Not true. The fact is that almost half of Americans of all ages have some chronic medical condition.

A chronic condition usually means ongoing contact with one or more medical specialists. For people who are used to having just one family doctor, this can be disconcerting. It takes time to make the rounds of all your doctors. And sometimes they may make conflicting recommendations, leaving you feeling anxious and confused.

I have had to deal with many illnesses for the past 12 years. Actually the many issues I have dealt with have left me feeling empty inside and needing help from someone who will listen and do what needs to be done.

I have been having more fibromyalgia problems than usual. The intense fibromyalgia pain has been ugly for a couple of weeks now. Plus my anxiety has been much worse and I can’t seem to take enough medications to get a grip on that awful feeling of impending doom. I am on my growth hormone but not feeling a difference yet. I have lung disease and I am afraid of dying. I am suffering and have no where to turn. The doctors aren't helping as much as they should. These are the usual problems I come across when things get bad.

When life gets rough I have to keep reminding myself things are going to get better. I am working on a life program to lose weight, quit smoking and get to a point where I feel better than I do now. I already feel better than I did last year when I could barely breathe and was sick every single day. These are challenges that I have had to endure for years and I am just starting to get tougher even if it hurts.

Life presents all of us with many challenges. It is those challenges that help us grow and become stronger than once before. I have seen the words and images in my head but I have been afraid to validate my story on paper. I want this book to be the truest of the experience as others may feel when they read. I'm still going through this experience and it's difficult to clear the fog and write what I need to. Now, I realize my experience however significant should be shared for those who need to know I am here and so others won’t feel so alone.

Back when my husband and I were dating I had developed a habit of every time I saw a water fountain I would run up to the water and turn my back and while making a wish while throwing the penny over my shoulder. We don’t do that anymore at a time when wishes seem more important then they used to be and yes some wishes even came true.

After we were married and after our second child things changed with my health and I would wonder ‘why me’ or ‘I am being punished’. Now I know maybe this was meant to happen and even though I still wonder ‘why’. I know there must be something larger I was meant to do. We all think when we get older we have a plan and that is what life will bring us. Unfortunately, this is not the case for any of us. Something will happen in our lives to cause us pause. Something greater we could never imagine and we have to face it with strength and understand adversity is a growing experience larger than we ever thought we could handle.

I started questioning my mortality. In light of becoming ill and seeing those around me pass or dealing with their own life’s obstacles. The reality maybe our lives are just the beginning to something much greater. From birth we all bare obstacles some more grand than others, some small and some larger than we feel we can handle. There are those of us who go for Olympic gold, walk the red carpet in achievement of the grand award, battle the path to fight for our country, work to the best of our ability and achieve great success.

I have faced my share of obstacles and will continue to brave the greatest fight and in my own way achieve my greatest successes by standing against the worst that is yet to come and will fight again. Maybe on the outside I appear to be weak and admittedly I have wanted to give up more times than I can remember. But in my soul I will be strong if not for the great award or success or battle but for myself because somehow I was chosen to pass on my own legacy of strength and hope to others who share the same obstacles I climb. It would be so easy to give up and allow myself to fall. Why should I? I’m here and I’ll be ready.

The feeling we can conquer anything that stands in our way and we can do anything we set our hearts and our minds to, is enticing to say the least. Soon we may learn that life is only brief and life changes in the blink of an eye. I wonder where living may have been lost and what happened to change all that once was. In my darkest of moments I feel an injustice there are so many who lead “normal” lives while I’ve allowed myself to not leave the house and let the disease take over and barely able to motivate myself to do the simplest of tasks. I stopped all the things I loved to do. Now yearning to be more and do more than I do now. The struggle began and all I want is to do is to be able to live life the way it should be lived ‘to its fullest’.















Chapter 1

In times of crisis we answer to ourselves and others for support. Sometimes those others may not be what we had hoped or needed. We have to rely on what we need to do for ourselves and accept that the one person you expected to be there may not understand or even want to understand.

My husband, John, was starting dinner and our two boys, Matthew and Chris, were bickering as usual. The phone rang. John answered and it was my friend, Kim. I went into the other room to take the call and she announced she was pregnant with her second child. Her first was due to be a year old in a few months. I was elated and celebrated her happiness for several minutes then it was onto small talk for about an hour. When we said our good-byes and hung up I went back into the kitchen and told John. He was surprised and happy as well. Underneath all the smiles and nostalgia I couldn’t help but feel a little sad.

I know I have two wonderful boys but it brought back some awful reminders of my reality. I tried to talk to John about my feelings and after all these years he’s become numb to my frustration and what I have to deal with every day of my life. There was no consoling, no hug, just indifference. I headed back outside to smoke and watched him stare at the TV while slumped down in the chair. Maybe he just didn’t want to go over this discussion again. Maybe he is just as frustrated as I am. Maybe he just wishes, as I do, that this would all just go away. He’s angry. He’s a good man who helps me through the roughest of times but deep down just as angry as me and possibly more.

After so many years of being ill I can only imagine how difficult life would be for the family and friends to deal with their loved one’s disease on a daily basis. The heartache and the frustration must be unbearable and eventually leading to indifference and in some cases causing the loved ones to give up. In perspective, this is understandable. However, taking the time to talk breaks down the barriers and open a line of communication between friends and family into the world of someone who may feel no less than hopeless in their quest to cope.

The communication closed as fast as it opened. My husband and family couldn’t understand and although this hurt I may find it difficult to cope on my own. Well, with or without help I’m determined to get better physically and emotionally. I may feel weak and sick but it’s important for me to help myself. I just don’t know how yet.

A few weeks later Kim lost her baby. I felt sad for her and yet as sorry as I was I knew she would begin again. I’ve always admired her strength to prevail over the toughest of obstacles. She has been through more than what most people have in a lifetime and yet she still has the energy about her to recover. Knowing her for over twenty-five years I’ve learned from her as well as seen what she hides from. There may be a big smile on her face and yet I always knew what was lying under that smile. I was just grateful she had her little son to keep her going and to remember what living really is.

Around the same time I brought myself to call a longtime friend I haven’t talked to in over 10 years. I was glad I did. All past differences were forgotten and the lesson was about to continue. My friend, Jane, had been diagnosed with stage four Breast Cancer that had spread to her lymph nodes. She made it through the treatments like a solider. She was always strong. She never cared what others thought and lived her life as others may only wish to.

She was born 90% blind and developed scoliosis as a child. Now she’s married and has two girls. The Cancer was merely a small obstacle for her to tread. Both breast were removed and a hysterectomy for her peace of mind. “No prosthetics, take me as I am!” Throughout the conversation I kept thinking back to what she told me and wished I could be as strong. It just floored and amazed me all at the same time and proves the will we can be capable of if we just set our minds to it. Hearing this made wanting to live all that much more important.

My only regret is my life has become such a mess. I was isolating myself from the world and my family. A mere hollow fixture that wanders the house like a prisoner sequestered to a life of pain and weakness, playing games online and watching cartoons to keep my mind calm. Just as much as I know this is my life as the illness envelops me into to its heartless state of being. I can only watch from a distance as my family busily lives their lives. I can only hope for myself that life will only get better in the long run as I learn to cope and change some of the things holding me back.

I can’t help the thoughts of suicide. I have had ER visits and tried the suicide hotline. The hotline was no help. When I called I couldn’t get control of my tears while explaining all that was going on in my life. I wasn’t able to cope. The technician didn’t know what to say and didn’t bother helping me through it. He had never had a call from someone with chronic illness and was stumped. This was the story of my life. I had to learn to cope on my own. What’s worse is I didn’t have any area friends to go to. John would get concerned when I went through these episodes and I can’t say I blame him but I was sinking fast. The only thing I chanted in my mind during these moments, ”Nothing hurts more than being sick.”

Every since this whole mess started I was seeing a psychiatrist for the depression and anxiety. I had seen her before when I developed depression after the birth of my first son. The depression was somewhat controlled with medications. It was difficult to handle knowing I was sick and the doctors just weren’t listening. The anxiety was another story. We tried every medication to control the bad spells and nothing was working. I can’t say I remember the first time I had an anxiety episode but I know the feeling all to well. They always happen at night and I would sit in the bathroom rocking back and forth feeling sick to my stomach, shivering, sweating, my heart feeling like it was going to pound right out of my chest, scared, out of control and not knowing what was going on.

What was making me feel this way? Why won’t this stop? The attacks were almost every night and I never really knew what triggered them. To soothe myself during the day I started watching cartoons and staying away from things and visions that might trigger an episode. Just before I was diagnosed with chronic illness the psychiatrist was contemplating electroshock therapy which just made the anxiety that much worse. We didn’t know what the outcome would be but we had been down every avenue with medications along with relaxation techniques there was no other alternatives. To me this was not an option I welcomed easily and I wasn’t going to go into this without a fight.

Months had past and my mind goes into overload. The anxiety was taking control and I was defenseless to escape. My head is filled with noise from around me and constant words, happenings, rushing thoughts through my head. I’m not coping. This is the loss of a close friend who knew my every secret, all my loves and dislikes and so much more surrounds my way of thinking. Relentlessly mourning over the loss of my former self and wishing so hard to be free from this intense darkness. I’m boxed in with no way out. Just sadness and desperation choke my every thought. I try to find ways to escape but peace eludes my mind and my body. There must be a way out of this. Restlessness clouds me with the need to know something, anything.

“I am still young,” I used to say to myself and would hear those words from nurses that I was too young to be going through all this. However, in the midst of the disease I find myself fighting instead of accepting what was to be my new life. Coping meant giving up in my mind and I wasn’t about to give up.

Chapter 2

You never said good-bye and that’s okay with me. All the times I saved you from yourself or from the monsters that surrounded you. I am going now and may look back but don’t expect me to embrace when you just turned away from me. I needed to know you where there for me too and you failed me in the end. I may hurt now but like life I will move on and be happy again. You will talk to me again and I will answer without anger because I do not hold a grudge. I simply know more as I age.

I was uprooted from New England and friends were hard to find here and those I left behind became just that. John and I married in April of 1990. Within a year we started a family. I was an only child and seeing some of my friends with their brothers and sisters just inspired me all the more to start a family. I would look forward to big family gatherings.

Matthew, our first born, didn’t come without complications. I was pre-eclamptic and had a rough labor. Once born, nursing him was a struggle and we immediately switched to bottle-feeding. By the time he was 2 years old he developed severe asthma. We spent many nights in the ER and with the nebulizer to keep his asthma under control. He was, I must say, a trooper when he had to have weekly allergy shots. When he reached 5 years his asthma was under control.

Christopher arrived five years later in 1996. Just before the birth I began to have dramatic changes that were different than my previous pregnancy. Again I had to have an induced labor due to pre-eclampcia but this time my blood pressure was soaring, my kidneys were starting to failing and I needed more procedures than the previous pregnancy. The pre-eclampcia was worse. Even through all this, I never thought my life was about to take a change like any other obstacle I had ever experienced.

It was 9 hours of intense labor. I was told to stop pushing and ended with the doctor immediately telling John he couldn’t cut the umbilical cord because the cord was wrapped around Christopher’s neck. The nurse took him quickly and there was an eerie silence. I was noticeably upset and kept asking, “What’s wrong, why isn’t he crying?” Those were undoubtedly the worst moments of my life at that point. I was able to hold him after the intense moments settled down and was the happiest mother I could be. He was going to be fine. But, after a few weeks went by and I went through the hormone break down I was back into depression as with my first son. This time it was different and I had no idea just how bad.

Symptoms were showing up every day. I wish I could say it was a definitive diagnosis but it hasn’t been that simple. I used to take walks with my husband every day and suddenly walking became more challenging and leaving me breathless and in horrible pain. Every visit to the doctors brought more questions and unexplained symptoms: significant weight gain, hair loss, high blood pressure, a stinging/burning red blotchy face, cold and heat intolerance, iron deficient anemia, lack of motivation, unusual spots on my legs amongst other unusual symptoms.

I was also having a real hard time leaving the house, severe anxiety episodes with “rushing thoughts” which at times spinning me into an unfamiliar world of surreal and unfamiliar feelings, constant pain and swelling in my shoulders, hips and back, no menstrual cycle since my youngest was born, sporadic sleep patterns, constant headaches and ear pain, heavy rectal bleeding and still grossly over-tired. All dismissed by doctors as, “It’s just in your mind. There’s nothing wrong with you! Please, I have real patients to care for!”

I knew something was very wrong and no one believed me. Even my husband and parents didn’t understand the magnitude of what was happening. It seemed each time everyone was around I wasn’t. I was usually sleeping and sleeping a lot. I would have to agree that it was all very hard for me to believe as well. I would always leave the doctors office in tears and frustrated they weren’t willing to help. Everyone's symptoms and blood work can vary tremendously and not follow what is considered "the norm" by the medical community. It's really wonderful if you can finally find a doctor who is capable of thinking out of the box, so to speak.

We're all individuals with our own body chemistry issues and we have to consider all the variables, and then we must trust that the doctors we have chosen to care for us will listen to us and will treat us according to what we are telling them and to how we are feeling. It is so easy to allow our unusual circumstances drive us crazy with all of the twists and turns due to all these types of confusing and complicated medical issues.  But in the end, it is what it is; for whatever the reason we have to take whatever road necessary to try to obtain the maximum benefits possible under difficult circumstances.

In 2002 we moved from our house in Pinellas Park, Florida to Clearwater, Florida. I was getting worse and felt hopeless because there was no doctor that knew what to do or even believed me. On the evening after we had just moved in at 6pm I received a call from the nurse of our primary care physician. Her only words, “You have diabetes and the paperwork will be sent by mail with a referring doctor.” No explanation, just a cold call to tell me there was even more to question. There was no member in my biological family who ever had a major weight problem much less diabetes.

To our benefit, we were sent to an Endocrinologist who was willing to work with me to find out what was going wrong. By this time there was lots of blood work and evaluations some of the diagnosis were coming by the handful: TMJ (affects the jaw joint and gives me jaw pops and painful ear pain), I was a carrier of Epstein-Barr Syndrome, chronic regular headaches and migraines, fibromyalgia, uncomfortable hives remain unresponsive to allergy medication, asthma being the only thing that wasn’t acting up until the past two weeks, compromised immune system, unusual heaving cough often brings on pleurisy and just short of pneumonia, pre-cancerous colon polyps, my first of several endoscopies I stopped breathing and wouldn’t have known about that until the nurse told us, “When you get home you’ll see several scratches on your neck. You needed to be resuscitated.” I was shocked at what she said yet getting more and more confused about what was happening.

The tests have started and I had no idea what I was in for. I'm bursting at the seams with questions. The first high-contrast MRI scans of my brain showed no significant findings. I then had a growth stimulation test. The end result, my pituitary was not producing any growth hormone, classified as AGHD or Adult Growth Hormone Deficiency. Considered to be rare and usually the initial cause is a non-cancerous tumor, Sheehan’s or Cushing disease or trauma. I have read that it is estimated that there are 20,000 children and 35,000 adults who are growth hormone deficient and that approximately 4,000 children and 6,000 adults are diagnosed annually according to the Magic Foundation. 

I think that the most important thing to remember is that you should be diagnosed as growth hormone deficient from an endocrinologist and look at replacement therapy to replace what is lacking in your body and not as a "fountain of youth" solution. What’s usually seen in children few doctors had little if an understanding of this disease in adults. Please note: The growth hormone has only been available since 1996 and is not the same as what you might hear about in the news used by athletes and celebrities. Adults need growth hormone just as children do. When the pituitary isn’t working properly they usually look for a benign polyp that may be the cause of the deficiency. After x-rays, CAT scans and MRI scans no polyp. My Endocrinologist stated my case was even more rare and difficult to treat and no known origin other than the symptoms that started during my last pregnancy. One thing to note is I have found no relation between adult growth hormone deficiency and any environmental factors.

I found it distressing not knowing how I got sick as much as being sick. Where there’s blue sky there’s more dark clouds looming around the corner. Side affects, the fibromyalgia was more stubborn, my head was still not quite right. I was on and off the nightly shots which given uninterrupted takes anywhere from 6 to 9 months to start seeing results. To add complications no one really knows the long term affects of treatment because the FDA only approved the synthetic growth hormone less than five years ago and doctors didn’t recognize adults needed growth hormone as much as children.

There are very few doctors who dare to recognize AGHD because it is rare and shows similar signs to other diseases. It’s few and far between you’ll find a doctor who is told about this illness and consider doing further research to educate those with adult growth hormone deficiency. It’s been mostly dismissed as having Chronic Fatigue Syndrome. There was limited information. Why? Most everyone understands that children need growth hormone and when there is a deficiency we see a child who is stunted in their growth. Adults, on the other hand, we would never connect the need for growth hormone but it plays a strong roll in our endocrine system. The pituitary gland is dime-size and located at the base of the brain just behind the eyes. I have repeatedly told all new doctors and the doctors who have forgotten: There is no one in my family with any of these problems including the weight gain. They have all assumed I am obese and associate the other symptoms are related to that and not the AGHD.

After 2 sleep studies I was given a CPAP for getting stage three and four sleep I had been deprived of for so many years was still a problem. The second sleep study with the CPAP still showed lack of stage three and four sleep. Depression is a large factor and even though my therapist who is treating now for coping with chronic illness didn’t understand why I was at the maximum dose of meds and still not feeling relief. She started to erase the idea of electroshock therapy, thank goodness, and strongly believed it was physiological and not psychological. The hardest thing about this entire process is hearing that I'm in it "for the long haul." 

It's a chronic illness, a chronic syndrome ... and this sobers and scares me more than I can handle right now. I want to see some results sooner rather than later just to give myself some heart and courage to continue but this I know will be a slow process. The benefits are gradual, and can take two or more years to obtain all the positive affects from my growth hormone injections.

An abnormal PAP came next. I had to be approved by my primary doctor. Before a hysteroscopy and D & C was a chest x-ray. Everything came to a halt that night when the doctor’s office called and cancelled the procedure suspect of Congestive Heart Failure. The next move was the cardiologist. I needed a stress test and after barely making it 5 minutes on the tread mill my result was a slightly enlarged left side of heart due to medications and pleurisy. A calcified granuloma was also found on the x-ray from pneumonia I had back in 1978. Finally the original procedure was performed and the only setback was they had trouble getting my blood oxygen level up. The CPAP then turned into a BiPAP with an oxygen connection.

The second Head MRI to follow would show shading in the upper spine, spots on my brain that remain unexplained as well as enlarged vessels in my brain stem also went unexplained. A second neurologist reviewed the images the same questions were raised but I was told something I hadn’t been told before. I have “empty cella syndrome” a disorder where the cella located near the pituitary fills with spinal fluid. I also had an inflamed pituitary. If you have empty sella then you do not have a functioning pituitary gland. This was considered a significant finding in one of the main reasons I became ill. I know there are few people out there with problems that far exceed mine. I consider myself lucky to have a wonderful husband and two wonderful boys who although challenging also give me life. But when diagnosed with a specific illness or condition at least there is the reasonable direction we face and possible treatment.

With chronic illness life remains uncertain and can only be played out minute to minute. Never knowing if and when you may get better and the extreme fear that the rest of your life you may have to face and cope with the reality that you may never get better or what’s worse is knowing that anytime the illness would take a turn for the worst. Moreover, doctors tend to either give up on researching the proper treatment or just pacify individual symptoms with medications to mask the symptoms and never really addressing the illness itself.

Many more events have taken me steps back, and even though I feel helpless and isolated and although difficult I try very hard to stay strong. Most friends found the disclosure of my illness hard to deal with and stopped writing and calling. My parents may not find this to be as serious as we’ve tried to express, they have their life and that’s the way they prefer it. I believe in a time when we need friends the most they will suddenly disappear off the face of the earth or are too busy to take time to stop by and see you. I’ve seen this in people with illness and it saddens me. Instead of worrying about saying the wrong thing or just not wanting to get involved friends and family should be coming together to offer their support not running from the illness as I can’t run from this.

Chapter 3

I woke early this morning around 3am, pulled the covers up over my shoulders and tried to close my eyes but I kept thinking about was the elephant in the room? This big giant, sickly and seemingly angry elephant was standing there staring back at me. What was I to do? I am sick and have lost hope in myself and I am scared. I can not take the pain or the fact I was ill. I wanted my life back. The truth stood right there before me and I had to learn to cope with it.

There must be some reason I became sick. Why did this happen? What can I do to get rid of it? After six years of no diagnosis and now everything is hitting me all at once. What did I do? There were so many doctors who didn’t believe me I started wondering if maybe this was all in my mind too. Maybe it is psychological. Maybe I’m not really sick. My head was reeling with what was going on and what I thought wasn’t going on. Six years of doctors basically shunning me out the door left me doubting myself.

After a STIM (a STIM test gives results of how much growth hormone the body produces) test the results came back with no production of growth hormone. I was diagnosed with Adult Growth Hormone Deficiency. This lead to research for me and in discussing this with my doctor I discovered the symptoms of AGHD and with proper therapy may be controlled or eliminated. Some of the symptoms the physician confirmed what I was feeling. Weakness, unexplained weight gain around the abdomen which may lead to type 2 diabetes (insulin resistance), lack of motivation including loss of interest in events, avoiding social contacts with friends and avoiding family, feeling of inferiority, thinning hair, thin and very dry skin, slow cognitive ability, poor sleeping habits, changes in blood pressure and cholesterol, decrease in energy, some loss of memory, decrease in bone density, sensitivity to heat and cold, loss of interest in sex and muscle loss. In some cases, such as mine, with migraines and fibromyalgia thirty percent of patients with AGHD have fibromyalgia. Among all the symptoms of AGHD I’ve had to deal with the unreasonable doctors.

I ended up going back to my first doctor when one doctor abandoned me 10 minutes into my appointment and told me he only has time for patients who are “really,” sick and not those who think they are and yet another accused me of drug dependency and the most unreasonable of all the doctors we found out he was charging the insurance company twice and occasionally three times for my appointments.

In light of my diagnosis the endocrinologist did suggest she would try to get me into a growth hormone study in Chicago. I panicked. The thought of stepping outside my “safety zone” horrified me. However, I knew this may help in my treatment and was anxious to hear back. Within a week I heard back from the Chicago Hospital. I was rejected due to my iron deficient anemia and being too ill to participate. I was disappointed but relieved I didn’t have to go.

Doctors don’t act as helpful as we would like to believe. Most all the doctors I have been to, aside from this particular endocrinologist have no understanding of what is adult growth hormone deficiency and have no interest in learning. They, in turn, identify the disease as chronic fatigue and move on. Even more disturbing, we may find a good doctor but they have little if any motivation to help and mostly concentrate on my weight problem and not look at the big picture.

This leaves me stressed and once again I leave the doctor’s office feeling frustrated and in tears. Everyone's symptoms and blood work can vary tremendously and not follow what is considered "the norm" by the medical community.  It's really wonderful if you can, again, finally find a doctor who is capable of thinking out of the box, so to speak. We're all individuals with our own body chemistry issues and we have to consider all the variables, and then we must trust that the doctors we have chosen to care for us will listen to us and will treat us according to what we are telling them and to how we are feeling. It is so easy to allow our unusual circumstances drive us crazy with all of the twists and turns due to all these types of confusing and complicated medical issues.  In the end, it is what it is; whatever the reason may be, we have to take whatever road necessary to try to obtain the maximum benefits possible under difficult circumstances.

I have been thinking about my shots and lack there of. Until now, effective human growth hormone therapy was an expensive and even dangerous treatment, available only to celebrities and the very wealthy through injections costing thousands of dollars. With the introduction of natural human growth hormone, it is now safe, reasonably affordable, covered by insurance, and can be free of any reported side-effects. There are also programs that offer patients the medications for free for those who qualify. We can now naturally increase human growth hormone levels in our body.

Growth hormone is given by injection under the skin before you go to bed at night when growth hormone is usually produced. This is normally self-administered or with help after some initial instruction from a nurse. There are a number of pen-devices to make injection easy and virtually painless. Doses vary. Typically, the starting dose would be a single daily injection of 0.2 or 0.3 with regular reviews at intervals to determine response. I was on 0.3 with some noticeable fibromyalgia pain and discomfort. But everyone is different and it is best to start on a low dose. If the doctor prescribes a higher dose insist on starting at the lower dose. The shots usually take approximately 6-9 months or even years to see any benefits from the medication.

Growth hormone shots are a synthetic version of what the body produces naturally in the body. We all have growth hormone just some people for whatever the reason may be lose growth hormone and absolutely need to be treated to avoid high risk of complications from the disease. Such as, heart disease, complications from diabetes, or other issues. With a better quality of life and more positive outcome for the patient gives us a reason to move on and enjoy life. This is something I have been hoping for a so very long time.

Chapter 4

We don't have the medical answers but we try to give each other the emotional support to help attain new levels of life. Take a chance to meet someone who lives on the other side of the door or the world. Help them to understand what it may be like to be in your shoes or maybe they can tell you how it is in theirs. Just be there in spirit and support all in every way you can. Yet by the same token, what if no one is there to help you through the worst moments and no one to support you?

I keep telling myself it could be so much worse but there are so many days it seems unattainable to reach that feeling of some normalcy. I’m still not sleeping the way I should and there are things I can do, as my husband reminds so often, to make myself feel better. I don’t know whether I’m purposely trying to make it worse or is it really there? I have been more motivated to give up the sweet drinks and the smoking but when that moment comes it becomes terrifying. The only things that seem familiar in these unfamiliar times are hard to get away from.

Times when I get the nasty anxiety episodes and after they pass I start to feel depressed and pressure in my chest and head where it feels like I want to start crying and screaming. I can’t control it and feels horrible! For now my emotions are all over the place. One minute I’m feeling somewhat okay and the next I’m totally breaking down. Common to anxiety are the awful feelings that life feels out of sync and surreal. These are the scariest moments for me. Luckily they are few and far between but when one hits the hopelessness comes with a vengeance.

Some common feelings kept repeating themselves. There was the urge to run away. I know I can’t run away from me but the feeling is so strong I would lose control. Having an invisible illness can be difficult to cope. If only it was easy to convince the people around me the way I feel and the way I am is because of the disease. Having an illness we can’t visibly see we find ourselves constantly trying to convince anyone including the doctors I am sick. My husband, although supportive, doesn’t realize just how difficult it can be to fight this on a daily basis.

Everything isn’t always logical. At the same time, I knew I didn’t need to prove to anyone I was sick. This was my battle. After the initial shock of being ill came a time of grieving there are real losses encountered. There is a loss of health, jobs, abilities, money, lifestyle and often friendships and other relationships. There's a loss of income, loss of enjoyments, and loss of freedom. Chronic illnesses especially those like these that affect every part of your being that cause you to feel like you've lost your old self. With the recognition of those losses comes a time of mourning. Like other illnesses a period of feeling angry follows too and wanting to fight back. These losses are very real and some are forever.

Social isolation is a way of life. I try to put the disease away in my mind, try to go out sometimes and try to forget I’m sick. If I focus on it all the time, it will encompass me. My husband tries to compensate by trying to relieve my stress and avoids situations that may be stressful with me. I can’t help but feel like a burden to him and my boys, who need a mom so badly. I get highs and lows, sometimes, minute by minute. My solace will be tomorrow I will feel better but my nights are the worst. I might be okay and suddenly crash into an episode then I get bad low with anxiety and I’m weepy, horrible and achy, and every minute feels surreal, out of sync, where I don’t belong and I’m plagued with discomfort in my own skin, irritability, in some instances rage and heavy mood swings.

I see the difference in me. There is white in my hair that continues to show up, I have a sallow appearance, slow moving, always thinking about better times, I am watching my hair get thinner and thinner as I get bigger and bigger. Just when I feel slightly better I over do it and suffer the consequences for days. As life became more of a memory I’d grab the sharpest knife that ironically is from a set my parents were given on their wedding day. I don’t want to die but my head chants, ‘Nothing hurts or feels as horrible as this disease.’

I’m still young and supposed to be enjoying time with my family and living life. I can't remember the way it feels to be normal anymore. Why is this disease so relentless and unforgiving? My husband stopped me after reminding me how important it is for me to be here. To lighten the situation I exclaimed,” I don’t feel like doing this anyway.” Humor had always been a way for me to deal with tough situation and to ease my nerves even though this was a very dark moment. That’s one thing I can say about all these years as serious as this all was I did still manage to keep some of my humor. Still not like it was before I was ill but enough to get me through the some of the worse days. Even if it is a horrible moment my husband can barely get through.

It’s been 11 years I’ve been ill, 17 years together and admittedly the relationship with my husband has been off and on. He’s been wonderful the entire time supporting me. He goes to all my doctor’s appointments with me and tries hard to help me through my bad days. Needless to say, the medications have its side affects. I have the occasional outbursts and what’s worse we not only sleep separately we have no intimate life. This acknowledgement would embarrass him but for me there are feelings of guilt and concern for him. Perhaps any other husband would have had an affair or left by now and John has stayed true. As I mentioned before he works so hard and he deserves to have a wife and friend. He has a friend in me.

Maybe not constant but I’m there. John feels trapped that he can’t get sick or angry. This illness overshadows all else and he thinks he could never get the needed attention he so deserves. It hurts to hear and I wish I could be there emotionally but the reality is I can’t. I’m not there emotionally and most of the time not physically. My endocrinologist recommended we try being intimate whether I wanted to or not. This was not the best advice I’ve ever heard. That evening I tried to get close to John. I just couldn’t bring myself to do it. The medications, the pain and general ill feeling left me empty and just uninterested.

Before we were married the intimacy was always there but since becoming ill it’s just not on my mind. For me it has been a blessing in disguise. I used to expect acceptance through intimacy. It took an illness to help me realize I don’t need sex for someone to show me they love me and I know now John loves me. Being molested as a child by a neighbor left me focusing too heavily on sex in past relationships and at the start of my relationship with John that perhaps it did take an illness to help put life into perspective.

The lack of sex was beginning to take a toll on John. Although I should feel otherwise he seemed indifferent. I would try to connect with him on other levels by holding his hand, whispering in his ear or giving him little kisses on the cheek just to let him know I still cared and he was still in my thoughts. Nothing worked and I felt more of a friendship than a marriage and ultimately more isolated. I wanted the closeness we had before but even then it was always me making the moves as it may have been easier for him to live with the passiveness and the feeling “Better to leave the expressions up to her than me.” Whatever works I suppose and that or this was working.

I would be lying if I said I haven’t thought about picking up my stuff and moving away. In passing I would insinuate to John and my parents about leaving and I always heard the same thing, “Where would you go, who would take care of you, what money?” Painful as what they said was true I still couldn’t help but think about it frequently. In the back of my mind I felt it would be easier on everyone not to have this burden hanging around and just maybe I might do better on my own. This was the illness playing tricks on my head and a small part of me knew that.


Chapter 5

The fishermen cast their nets into the dark rough waters hoping for the greatest catch only to pull back with sweat dripping from their brows and no catch. But they do not give in and leave, they continue to cast their nets and hope for that one best catch. Meanwhile the captain remains calm and knows that it will be a good day for fishing.

The medications were adding up. I was losing track and this became dangerous. Part of the problem was the side effects, the doctors’ lack of communicating with each other and changing medications left and right and my accidental overdose of some of the meds. My body was rejecting some and not responding to others. This illness and constant visits to doctors was turning into a nightmare. One procedure after another as well as the countless doctors visits.

After an appointment with my psychiatrist she gave me a daily medication tray I could use to organize my pills. I’m up to twenty-five plus a day and can’t begin to fathom what the medications are doing to my body. There weren’t any medications I could eliminate due to all the symptoms. At this point, my medications were my breakfast and dinner. It was amazing how I could go from taking no pills to taking so many. This didn’t include my nightly injections of growth hormone, my asthma medications and the use of the nebulizer to help control my frequent cough from my asthma.

I started my growth hormone injections just a couple of weeks ago. So, I haven't had any of the benefits yet. Our endocrine system is a complex balancing
act. Each hormone acts off on one or another ultimately interacting with each other directly or indirectly. Depending which of your hormones are out of whack, treatment and progress will be different than someone else's. I would love to talk with anyone who shares this disease. ‘How you are doing and what have you been through?’ A friendship with someone going through the same thing would be wonderful. My cause is still unknown and I didn't have this as a child. I had some hip pain for two days then no noticeable side affects. Doctor prescribed Neutropin AQ. We had the Genetropin delivered before I could use it---used that until the new insurance was approved for what the doctor prescribed. Around the time I started the Neutropin is when I began to feel worse. My husband insists they only differ by manufacturer.

A few weeks in I’m feeling worse. I hurt and my head feels foggy. I can't get a reply from my endocrinologist. My husband has been trying since last Monday. I've been feeling more weak, depressed, tired, in pain and restless. I'm on .3mg of the growth hormone for now. I have to go back to the gastroenterologist and may have to have my third colonoscopy sooner than we thought. My bleeding is bad and in light of recent developments it needs to be done. I'm scared and know everyone has enough to deal with but I really need someone. Yet at the same time I push everyone away and know too be realistic and optimistic at the same time can be really difficult. I don't know what to say. I miss the way I used to feel before I became ill and wish I would get better soon. Where did this come from?

Okay, the idea John and his dad had to help me feel better was to get a 2 year pass to Universal Studios. The thought was there but a trip to a place were I can’t go on the rides, in one of the hottest places on earth didn’t seem like the best thing for me. I went along with John’s plan and we spent a few days in Orlando. The day we actually went to the theme park was nothing short of stressful. Even though John rented a mobile chair for me I spent most of my time feeling sick from the heat and frustrated I couldn’t go on the rides, little shopping, no fun. Don’t get me wrong I would usually make the best of a bad situation but when you’re sick nothing looks or feels good. We spent much of time dodging the sun and trying to find a cool area to sit. Admittedly when we first arrived to the hotel I did feel more relaxed and was looking forward to our visit.

The next morning we did our usual routine with the exception I wasn’t feeling right. I was restless and I was feeling a little off balance. Moments later I headed for the bathroom and my balance became much worse. After some arguing and going back and forth with John he finally decided to call the Hotel doctor. I was sick, very sick. It came on so fast I didn’t know what was going on. The doctor couldn’t help and chose to call 911. Here I am in a hotel we were about to check out of and I was making an embarrassing exit. Much worse, the ambulance air-conditioner was broken and it must have been the bumpiest ride I have ever had. Once at the hospital I was hooked up to an IV and given anti-nausea meds and something for the balance there was no definitive answers. I staggered to the bathroom and then we off to the other Motel on the 12th floor. Please! The rest of the vacation I stayed in the room and practiced standing steady.

Because the balance problems weren’t going away I had to have another MRI done of my head and neck. The first neurologist was no help. I was recommended to another who spent most of his time lecturing merely to listen to himself speak, I believe, that there are no titles or diagnosis just working on self-esteem and getting past the disease. In light of his babble there was a major break through. He found I had an inflamed pituitary and empty sella syndrome. That’s where the sella, located next too the pituitary, fills with spinal fluid. It wasn’t until after I left I realized what he said and I was ecstatic. There was a piece of the puzzle for this illness!

We immediately called the second Endocrinologist I had been seeing off and on for 2 years. Having not seen the newer endocrinologist in over a year he decided there was no need to further move on with this because, “I had no symptoms.” Yet another doctor’s ingenious words of wisdom pass my ears. It was time to go back to my first Endocrinologist. She concurred that this might be the cause of the growth hormone disease. I felt a certain relief in knowing that we had partial cause. The diagnosis may be incomplete but part of it was there and that made me feel better inside.

Chapter 6

I remember when the snow would fall, each snowflake different than the other, and catching as many as we could on our tongues. The flakes were cold and crisp and quickly melted in our mouths. Those were simpler times and each one different than the first. That is what we expect of our lives, each moment exciting and new and all too anxious to reach the next moment. We saw the world through wide eyes and shivered at each passing story as a whole new adventure. Now, we are older and we have stopped taking the time to catch the snowflakes on our tongues. The world is a smaller place and we have lived on, some as expected and some not as hoped for. It is not the time the clock slows but the time to catch another snowflake and to be anxious of what is yet to come.

Iron deficient anemia was a concern. This type of anemia is common among those with chronic illness. I had to see an Oncologist about bringing up my iron level. I was anemic. To complicate things more the second MRI would spur off a bone biopsy to be sure it wasn’t cancer. Happy that came back okay but still frustrated there were more questions than answers. However, I did have to have an iron IV for the anemia. That made me sleepy when they added an allergy medication to the bag to avoid any negative reactions. The procedure took about four hours and when it came time to leave walking was difficult. My legs felt like rubber bands. This lasted a few days. Come to find out that was my negative reaction. At least the anemia would be under control for now.

In April of 2006 I have been consulting a Gynecologist for irregular periods. Okay that’s an understatement. I haven’t had my period in 6 years. I also had a serious problem with urinary accidents. After weeks of testing the doctor and I discussed a bladder splint to stop the accidents, another D & C, hysteroscopy and now an oblation to help with the bleeding. An oblation is a balloon that is injected with very hot water, inserted in the vagina to burn away the surface of the uterus. The only setback is I wouldn’t be able to have more children due to the danger of complications. May 9th the procedure was scheduled and I was more than nervous about the upcoming day. I had a cough I’d wake up with since before the holidays that wasn’t going away and was having difficulty breathing and chest pain. I made sure to warn the anesthesiologist about previous procedures and breathing issues.


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