Although this is rather long, I tried to explain what life is like on a day-to-day basis for me since I was diagnosed in the fall of 1967 at the age of 17.
Day to day living with Addisonís Disease can be complicated for many. Although not all of us with the disease experience the same daily problems, the basis of living with Addisonís is a daily challenge.
For a person without
Addisonís, the body starts to produce itís adrenaline around 5 or 5:30 a.m. By 6 a.m. or so, he/she is waking up. That is why many people wake up just before their alarm goes off during the week and will be awake earlier than they want on the weekends and not able to fall back asleep. Itís the body getting ready to face the challenges of being awake during the day.
Night time comes. You start getting sleepy. Itís that the adrenaline in your system is lower than it was first thing in the morning. You start out with a higher dose first thing in the morning, the body keeps you supplied with what you need during the day and slowly tapers off until bedtime. You fall asleep, but thereís still that pituitary gland monitoring your body just in case something happens during the night, and you need to be wide awake for what came up to be addressed before morning.
Not so for those with
Addisonís Disease. The body produces no adrenaline. To get the adrenaline in our system, we need to take a steroid replacement. Steroids come in several forms: hydrocortisone, prednisone, cortisone acetate, prednisolone, methylprednisolone, dexamethasone, and some others I might not know about. Each one is released at a different rate and has slightly different properties. Once we take the steroid, it takes from 45 min. to 1 hr. to be absorbed into the system to give the energy the Addisonian needs to face the day. Until it is in our system, we donít have the energy it takes to perform ďnormallyĒ. What does this mean on a day to day basis? If we want to be awake and functioning by 6 a.m., we need to set the alarm to wake up at 5 a.m. Then we need to get up, take the steroid, and go back to bed for an hour. Now that may sound easy, but steroids need to be taken with food or milk. They can cause bad stomach problems if you donít do this. So, itís now get out of bed, go to the kitchen and at a minimum pour a glass of milk, take the medication, and get back to bed. Not everyone can immediately fall back asleep. This means weíre awake for about 15 min. starting at 5 a.m. As the cortisone gets into the system, it slowly wakes us up. Maybe we sleep some; maybe not. Then we try to get about a normal day Ė having breakfast, getting ready for a job, driving to work. In a perfect scenario, this would work. Who wants to wake up 1 hr. earlier than the rest of the world every day to take a pill this way?? I found myself just sleeping until 6 a.m., getting up and trying to focus until 7 a.m. I had to be out of the house by 7:10 to be signing in at work at 7:30 a.m. I would have to have everything laid out the night before, so I didnít forget anything the next day. My endocrinologist once told me it was like a person who is going on a long road trip and would be driving all day long and possibly into the night. If you get on the road with just a few fumes of gasoline in your gas tank, you will need to be trying to constantly fill up the tank while you are continuing to drive down the road; however, if you start with a full tank, you donít have to fill up constantly or worry about the level of gasoline in the tank for a long time.Non-Addisonian
: During the day, any time the body needs more energy to cope with anything, the adrenals in a non-Addisonian will provide the body with more adrenaline to meet the level needed to get through the situation. At any time and no matter what the situation, the body will be ready to face whatever life throws at you. A long, difficult day with many challenges at work while youíre not feeling well and mentally stressed about a family situation waiting to be discussed or ongoing at home: no problem. The pituitary and adrenals take care of you with as much adrenaline as you need. You can handle it. Need to stay up late (party; bring home work to get done for the next day; sick child waking you up during the night? etc.)? No problem. Need to be in extreme heat or cold? No problem. Didnít get enough sleep the last few nights? No problem. Some extra physical activity you need/want to do? No problem. The list goes on and on with any change or challenge you face every day. ďFight or flightĒ and youíre ready for either. This is constantly going on in your body 24/7/365. Addisonian:
You wake up and get ____mg. of steroid. After 45 min. to an hour, you can start to function. Depending on the steroid replacement we are on and the medication schedule, we donít get another dose until that time. What if all of a sudden after being up for 3 hrs., we face something we refer to as ďstressĒ? No extra steroids in our system until next dose time. Iíve seen 9 or 10 endocrinologists (specialists in Addisonís Disease) over the 40+ years Iíve had this disease, and they all tell me that the only time I should increase steroids is if Iím running fever over 100 degrees, having surgery, have the flu (vomiting and diarrhea), or something major like that. We face the same challenges as any other person, and Iím sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, Iím limited to ___mg. of hydrocortisone. When itís gone; itís gone.
There is really no conclusive study Iíve heard about that tells exactly how much steroid I should take. Everybody is different and has different needs. I have other medical problems, but there is no research on how much steroid I need to handle them. We try to live through a whole day as a non-Addisonian taking the dose of steroid prescribed by our endocrinologist without being tired earlier than ďnormal peopleísĒ bedtime. It doesnít always happen that way.
Diabetics have a tough time. I know. My father has diabetes. For those with that terrible disease, there is a glucose monitor. They can check their blood sugar whenever necessary and as many times a day as they think there might be a problem. Unfortunately, there is no way for an Addisonian to know how much steroid is in their system. All I know is when I feel so bad that I need to lie down before I fall down, muscles start aching bad, I feel nauseated, and other symptoms, I then know that Iím low on steroids. I take what endocrinologists call a stress dose. Itís an extra amount of steroid to prevent me from going into an Addisonian crisis. The crisis situation is when you are really weak and probably on the verge of losing consciousness. This situation calls for someone to get you to an emergency room immediately. At this point, you need an IV with a very high dose of cortisone to pull you through. It is life threatening. Iím not exaggerating here. The bad part is that there is no way to determine exactly how much extra steroid to take when you notice that things are starting to go bad. If there were only a type of tester as there is for those with diabetes, many of us would not have the problems we do.
Sleep time? Not quite the same as non-Addisonian. If thereís still too much steroids floating around the system, you canít fall asleep. Thatís the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good nightís sleep on a regular basis. This has been a big problem for me for 40+ years.
The other part of the adrenal gland helps to control blood pressure. It balances the sodium and potassium. Most people are aware of this with all the publicity about high blood pressure. Addisonians have the opposite problem. We need the mineralocorticoid to help retain enough sodium to actually have a blood pressure. Our problem is the opposite of the rest of the world. Many of us need to take a medication called florinef to help retain salt in our body. We are also told to put as much salt on food as we can stand. I live in a very hot, humid climate. During the summer, I need to take salt tablets in addition to the florinef and add salt on my food. I cannot tolerate heat, even with the medications. My personal limit is 85 degrees. After that you can tell which one I am in a group outside. I start to sweat profusely, breathe heavily, and pant like a dog who has been left outside in the heat without any water. I start to get weak and wind up sitting down or finding some air conditioning. Again, Iím not able to participate due to my body not responding to the need. Again, no way to determine how much of the florinef and/or salt I need. This doesnít take long to happen. Iíve gone out to get the mail in the middle of a hot summer afternoon and come inside with my blouse all wet due to sweating, very thirsty, and very tired. I could go on and on with examples of what the heat does, and how little time it takes to be in this heat before I start to feel ill. Over the years Iíve learned what to do to avoid these problems and crisis. Unfortunately, it means that I canít participate in many activities or family outdoor get-togethers.
This is just a brief summary of what I find I live daily.
There is also the issue of side effects of long term steroid use that I wasnít told about when I was diagnosed. Steroids can cause osteoporosis, so DEXA bone scans should be done, and we should take extra calcium daily. I didnít find out about this until Iíd had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, Iíve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin; "moon faceĒ as itís referred to Ė puffy cheeks due to retaining fluids from taking too much cortisone Ė but what do I do if I need it to keep me alive?
Summing it up, many endocrinologists seem to have the opinion that as long as the cortisone and florinef are taken daily and the electrolytes are in the normal range on blood work, the Addisonís Disease is under control until the patient gets to a crisis or the verge of a crisis. This is not what I live, and from others with this chronic, rare disease have said, many of their lives are not like they were pre-diagnosis.
Addisonís is an autoimmune disease. This means for some unknown reason, the body turned on itself and destroyed the adrenal glands. It is chronic, meaning it will continue as there is no cure for it. It is also a rare disease. Iíve read that it affects 1 in 100,000 people.
Iíll leave you with this type of problem those of us with Addisonís Disease face: I saw my endocrinologist a month ago. He did remind me to have lots of salt, since weíre already having hot weather in the south. 2 days later I saw the rheumatologist for the severe Rheumatoid Arthritis I have. He said that I had very swollen, inflamed joints all over and it would help to limit my salt as much as possible. What is your answer to this question: do I (a) take salt and have a blood pressure and some energy OR do I (
limit salt and try not to live with the extreme pain and stiffness in my fingers, hands, toes, feet, knees, spine, shoulders, and all of the other joints that are causing me so much pain and limiting my ability to move, yet have an extremely low blood pressure which means I have no energy??