Addison's Disease Facts

Lessons Learned - Living 42 years with Addison's

2011-06-02T09:05:00.000-07:00

This is a post authored by a friend who has lived with Addison's Disease for 42 years as of this writing. She wanted to share her experience of dealing with AD as well as Rheumatoid Arthritis. This has posed it's own set of problems and she shares her hard earned knowledge with us. Thank you, Vicky.

Another thing I learned after 42 years as an Addison's patient

As you can all imagine, after 42 years struggling with this disease, I've been through a lot as far as trying to figure out the correct amount of medication(s) to take to stay as normal as possible. I've read as much as I can, which sadly isn't as much information as we should have, to try to avoid a major crisis problems, or other information we should have to try to control Addison's in relation to other health problems. One publication that was very helpful is 'Living with Addison's Disease: An Owner's Manual' for individuals with this disease. It was very thorough. Also, I finally found a couple of places on the internet where others shared their experiences. I'm not that great on the computer skills, so I thank all who take the time to share what they know.

One thing I want to share now that I just recently figured out. I complained of sore muscles and swollen, painful joints for several years. It was all attributed to side effects from long term steroid use. I had started back to work as an instructional assistant in Sept., 2005. I was in some pain, but as you know, the only way for us to get health insurance is to be part of a large group. If not, you wont be able to have anyone write you a personal health insurance policy. The only other health insurance I could get was through the state high risk pool. The premiums are extremely expensive. I thought that instead of all of the rigors of full time teaching, just being an assistant would not be as difficult for me. In Dec., 2006, I was having more joint pains and coming home more and more tired as the months passed. More doctor visits, and I was told the same thing: side effects from long term steroid use. I plugged along. In the spring of 2008 I was really in pain and struggling to walk a lot due to extremely sore thigh muscles, sore back, painful feet/toes, and very swollen, bent fingers. Naturally, the heat in South Texas was playing havoc with me trying to balance the correct amount of salt and florinef, since I spent a lot of the day going around campus with most of the walkways outside. When school let out in May, 2008, I came home and went to bed. I could hardly move. I was in a lot of pain and knew it was more than spending long days on the job having to be in the heat so much. I saw my primary care doctor. She said I had acid reflux, which I did. To be sure it wasn't more, she had me go to a cardiologist for a complete heart work up. Everything was fine. I saw the endocrinologist. All of the blood work was fine. I spent almost all day in bed and with no energy and sleeping most of the time. Another visit to the primary doctor. No different result. In April, 2009, I again saw the endo. He said thee was something going in not related to Addison's and referred me to a rheumatologist. I'd spent the last 10 months pretty much doing nothing but lying in bed in pain and feeling terrible and complaining to my doctors. I saw the rheum. 2 weeks later. He listened to my history and symptoms, examined my hands/wrists/fingers and feet/toes. He simply said "You have severe rheumatoid arthritis". I was shocked. He gave me a Medrol shot, a Medrol dose pack to take and sent me for tests to confirm. On my next visit the tests showed RA. I had 2 cortisone shots, one in each knee. He put me on methylprednisolone to try to reduce the inflammation. Another month and cortisone shots on teh 4 most painful fingers. I also started on and oral medication called methotrexate, which is taken once a week. I took it at night as I realized that it made me very sleepy. In fact. for 2 days after I'd take it, I was more worn out than normal, if that's possible. I was on a rather high dose of methylprednisolone for 10 months in an attempt to give me some relief. The endo. said that I should cut back the methylprednisolone as quickly as possible, but the rheum. said I needed it for the severe RA.

In June, 2010, I started on Orencia infusion. ( that means it's a medication given through and IV.) After the first one, I came home and within 2 hours I was sound asleep. I sletp for 3 days. After the next infusion, i had the same result. It dawned on me that maybe the Orenca was a "stressor" on my body. I called the endo. before the next one. He said to increase my hydrocortisone 5 mg. on the day of the infusions. I was scheduled to see the rheum. before the 3rd infusion. I told him what the endo. had said. He told me that I should increase the methylprednsiolone to 2 of the 4 mg. tablets 3 times a day: the day before, the day of, and the day following the infusions. Now, there is quite a bit of difference in the amount of extra steroid here. As I understand it, methylprednisolone to hydrocortisone is a 1 to 5 ratio. Meaning, 1 mg. of methylpred. is equal to 5 mg. hydrocortisone. In effect 2 of the 4 mg. methylpred. tablets ( a total of 8 mg.) are equal to 40 mg. of hydrocort. Since I was taking 8 mg. 3 times a day in effect, I was taking an equivalent of 120 mg. extra hydrocortisone for those 3 days. Endo. says 5 mg. the day of treatment; rheum. says 120 mg. for 3 days. Naturally, there is no information from the company that makes Orencia about what to do if you're taking the infusion and have Addison's disease. I tried the high dose, but I kept having trouble with the high blood pressure and high heart rate. I kept trying to adjust the methylpred.: take 1/2 the methylpred. the day before, so my b.p. and heart rate weren't too high, then take a tapered dose for a couple days after infusion; take 1/4 the methylpred. the day before, and taper; etc. After not getting much relief for the rheumatoid arthritis, I had the last infusion in April, 2010. I still hadn't figured out how much steroid I needed to take to avoid being on verge of a crisis.

I was then switched to an oral medication plaquenil, which I took daily until April, 2011. All along I was on the methotrexate, too. About 3 weeks ago it dawned on me that every time I took the methotrexate, I would be extremely tired and in bed for a couple of days. I wondered if this oral medication could be a "stressors". The last 2 weeks I tried extra steroids the day of the methotrexate. It s a very powerful drug. but I thought nothing of it, since it's just an oral tablet.

I just started on an injection called Cimzia 2 1/2 weeks ago. Here I go again trying to figure out how much extra steroid I need to get through without having and Addison crisis. Again, no statistics. The rheumatologist has no idea what to tell me. The endocrinologist has no idea what to tell me. I've figured out on my own that I definitely don't want to take both the Cimzi injection and the methotrexate on the same day. I give myself the injection on Thursday night and take the methotrexate in Saturday night. Of course, for both I definitely know that I need extra steroids. Unfortunately, for me, there is no way to know what to do. It's up to me to figure out what I need based on "how I feel". I do stay well hydrated, but now it's starting to be summer with temperatures in the mid 90's here in Texas, so I'm fighting the heat thing for Addison's and trying to be sure to take enough salt. Then the rheum. reminds me to limit salt to help prevent some of the bad swelling and pain and stiffness I have due to the rheumatoid arthritis. What to do? What to do? I hate being the one to try to figure out how much steroids to take and for how long when I need my RA meds. Unfortunately, right now the shots are once a week, and the methotrexate is once a week. By the time I start to taper down from one, it's time to increase for the other.

The reason I'm writing this, just in case you read it this far, is to share with those who have Addison's that what I learned during 40+ years about increasing steroids for stress was limited to things like diarrhea/vomiting/surgery/other trauma/etc. I can tell you from what I've been through these past 2 years that you might want to check out medications either oral or injected or IV that are strong. Methotrexate was originally for certain types of cancer; plaquenil is used to prevent or treat malaria. They are powerful drugs. They have been shown to have positive results for some RA patients. Orencia and Cimzia are for RA. it just took a while before I figured out that maybe they could be more than my Addisonian body could handle without extra steroids.

I just hope that maybe someone else can learn something from this note and be able to apply it ti their specific situation. There is woefully little information for us with this disease.

Wishing you all health.

Vicky

How your adrenal glands work

2011-04-09T11:08:00.000-07:00

The adrenal glands are tiny triangle shaped glands located atop each kidney. These glands are vital to our body's function and it is life-threatening when they fail. There are two parts of each gland: the cortex, which provides several hormones, including cortisol and aldosterone as well as androgens; the medulla providing adrenaline or epinephrine and norepinephrine. It is possible to live without the medulla functioning , but the hormones released by the cortex are necessary for life.

Drawing of the adrenal glands

The following article explains what happens when the adrenal glands malfunction and Addison's Disease occurs.

What is Addison's Disease?

The following shows the role the adrenal glands have in our waking response, cortisol is released at this time in response to the stimulus by the pituitary gland. Without ACTH from the pituitary the glands will not release this needed cortisol, which allows us to go about our daily life.

Cortisol Awakening Response

Cortisol is integral to our body's functioning. Without it we can not get up in the morning, metabolize our food, handle everyday stress, in other words live! But those with Addison's Disease or adrenal insufficiency must do this with replacement steroids, we must learn to mimic the action of the adrenal glands as closely as possible. That is key to living well with Addison's or AI.

I wish you health!

Voluntary Recall of Dexamethasone Vials & New NDC Number for Solu-Cortef Act-o-Vial

2011-03-19T07:59:00.000-07:00

There has been a voluntary recall of Dexamethasone injection ( vials), both single and multiple dose. This is sometimes used to treat an Adrenal Insufficiency/Addison's crisis. I am enclosing the link to the FDA/ Recall-Firm Press Release, dated Mar. 16, 2011. Please read for further explanation of recall.

FDA/ Recall-Firm Press Release/Dexamethasone Vials

Please read if you use dexamethasone as your emergency injectable.

Solu-Cortef Act-O-Vial Preservative Free!

Pfizer is now only producing Solu-Cortef Act-O-Vial preservative free. The new NDC number is 00009-0011-03 for the 100 mg. vial. This is the recommended dose for an adult during an adrenal crisis. If you are being told that the act-o-vial is no longer available, please ask the pharmacy to look for the above NDC number.

Addison's Disease and other illnesses

2011-03-16T11:31:00.000-07:00

There seems to be enough on our plates when we have Addison's Disease alone...but other illnesses do occur and many are chronic. What impact does this have on your Addison's? or the other illness? It most definitely complicates all. It will many times mean a need for more steroid support for the Addison's. A crisis may be more likely. When a flare of a chronic illness occurs it will affect your Addison's, meaning you may need more steroid just to maintain your normal level of activity or stability. Anything that causes a stress will deplete your steroid and threaten a crisis. And another illness is a stress. Please keep this in mind and do not hesitate to increase your steroid when necessary. But always consult your medical advisor for their recommendations on how best to treat your Addison's and keep all medical professionals involved in your treatment aware of what each is prescribing or doing to control or treat your illnesses.

Do not feel that you are being fragile or, dare I say, a wimp if you are having a difficult time managing your illnesses. You are stronger than you think!

Enjoy your spring...and take care of you! Without guilt!

The chronic disease blues...

2011-02-11T13:51:00.000-08:00

Those of us with a chronic disease such as Addison's Disease or Adrenal Insufficiency face the blues at times...they can be like a heavy cloud hanging over us, keeping us a prisoner of our disease. Not doing the things we once enjoyed or even excelled in doing. Days spent on the couch...getting little done and feeling guilty that we have spent another day lost in the fog of Addison's or adrenal disease. There is no way out of the fog at times...but other times we face the sun and spread our wings and soar! The sad thing is that this can last a short time or it can be extend but there is always the reality that the days on the couch may return. It can be depressing.

I find myself becoming a recluse...not wanting or feeling comfortable leaving my safety zone. This is self-defeating as it snowballs...the more you withdraw the harder it is to get out there and do things! You had rather not bother than to prepare to go out. This is not good! It makes depression more likely and it is harder to overcome. We need interaction with others...I am writing to myself as well as others! We need other interests, you know what those interests are for you. Most importantly, just do something that you find enjoyable and rewarding...it will improve your mood!

Chronic disease is a breeding ground for depression but it doesn't have to overtake our lives...there is help, just reach out and take advantage of the medical and professional guidance available to you. Find a support group, others who know what you are going through, who share the same problems and obstacles, and those who are living well with their disease can be an inspiration to us. The support can be local or online...just reach out!

Find things that make you smile and brings you joy, leaving less room for the blues!

Your Emergency Injection

2011-02-09T10:00:00.000-08:00

Everyone with Adrenal Insufficiency should have and be familiar with using an emergency injection of steroid. The steroid of choice is Solu-Cortef, act-o-vial, but Solu-Medrol is also available in an act-o-vial. Dexamethasone is another choice but it is the longest acting of the glucocorticosteroids.

It is important that you have this injection with you or nearby at all times. Included in your emergency kit (needle, alcohol swabs, injectable of choice) should be a sheet detailing how an Addisonian Crisis is treated.

I am enclosing links with instruction for injecting your steroid and an emergency care sheet you may print out to include with your kit.

http://z12.invisionfree.com/apeoplevillage/index.php?showtopic=391

http://addisons-diabetes.gkznet.com/solucortef_v3%20_sept04.pdf

http://www.cc.nih.gov/ccc/patient_education/pepubs/mngadrins.pdf

Please ask for an emergency injectable if you do not have one...it can save your life. Here is a link listing injectable steroids available by prescription from your doctor.

http://z12.invisionfree.com/apeoplevillage/index.php?showtopic=1993

Keep well...

Special note: If you are having trouble getting Solu-Cortef Act-o-Vial or are being told it is no longer available, ask your pharmacist to look for the preservative free injectable. NDC: 00009-0011-03 ( the 100 mg. strength). It has a different NDC number than the one many of us are familiar with carrying. 2-17-11

Vitamin D...are you deficient?

2010-06-24T08:27:00.000-07:00

Due to the steroids those with Addison's Disease or Adrenal Insufficiency must take we are at an increased risk to develop osteoporosis. It is very important that you consume calcium rich foods and in some cases take calcium supplements, as well as Vitamin D. Vitamin D deficiency is becoming more prevalent so it is a good idea to have your levels checked. As we are being more careful of sun exposure we are increasingly becoming Vitamin D deficient.

The upper tolerable intake level recommended by the FDA in the United States is 4000 IU.* The best form is Vitamin D3 which is the same as the body makes from sun exposure. A few minutes of sun exposure on non sunscreen protected skin daily will usually supply all the Vitamin D needed. But those living in colder climates, where less sunshine occurs are at more risk for deficiency, as well as those who use sunscreen or are not outside regularly.

Get your levels checked! Be sure of your levels and your needs.

* This post has been edited due to the recent new recommendations from the FDA.

Now you have a diagnosis, what next?

2010-06-10T20:44:00.000-07:00

You have been given the diagnosis of Addison's Disease or Adrenal Insufficiency...now what do you do? First, learn all you can about your illness, from your doctor, healthcare workers, forums and the many resources at your disposal thanks to the internet. We are living in the best time of all for the Addison's patient. We have the necessary medicines and we have information readily available to us...all we have to do is look for it.

Most Addison's Disease patients live a normal life-span...if they take care of their disease properly. Learn, learn, and learn some more...an educated patient is a much healthier one and their disease is much better managed than one who knows little about it or why they need to take special care of themselves. Our care is ultimately in our hands...our doctors can give us the medicines but we must take them and learn to live with the ramifications of having a chronic illness.

Have a healthy and happy summer.

Addisons Village Forum Link:
http://z12.invisionfree.com/apeoplevillage/index.php?act=idx

Crisis Prevention

2009-05-05T13:01:00.000-07:00

It is with sadness that I am choosing to address this subject due to the recent passing of three Addisonians. I do not wish to intrude on the privacy of these family members, so, I will not go into details of their respective situations. We must all realize that this disease is one that can be fatal if underestimated. There is this potential with any Addison's patient. But this is not a time for panic, but to learn to care for our disease properly and to recognize and treat a crisis promptly.

It is better to err on the side of caution. Always keep a ready supply of steroid with you or nearby at all times and try to have someone to call if you need assistance...being alone when you are going into crisis can be very risky. It is possible to become so incapacitate that you can not care for yourself...at times like these you need , if possible, someone trained to inject your emergency dose of steroid. This is crucial that you have this injection available and used immediately even before you reach the ER. Any injury, or illness must be diagnosed and treated after the Addison's is addressed. Do not ignore the signs of illness and always keep adequate amounts of steroid in your system...this is important: you can not miss doses or fail to take your steroids as this in and of itself can bring about crisis.

The signs of crisis:

http://www.addisons.org.uk/info/emergency/page2.html

There may also be severe flank pain.

You must not ignore symptoms or signs of crisis. A crisis may progress rapidly. Have anti-nausea medicines to prevent vomiting as this can rapidly send us into crisis. Below are links describing Adrenal Disease and treatment procedures for a crisis. Read them and be aware of what happens when a crisis occurs and procedures for treating a crisis by the ER physician. Learn these procedures and have someone else who knows how to mediate for you.

http://emedicine.medscape.com/article/765753-overview

http://emedicine.medscape.com/article/765753-treatment

Do not ignore your disease. Do not underestimate it's potential for rapid decline and be proactive in learning to avoid or treat a crisis aggressively.

This is not meant to cause panic but to urge you to learn about your disease, which will enable you to live and cope well. Education is your best protection.

Please be prepared...

2008-06-15T15:07:00.000-07:00

As any of us with a chronic illness can attest, we many times take several different medicines. And we are often asked to list these medicines when we go to a new doctor or the ER. We are not usually our most alert at these times or we might be unable to answer for ourselves and it is necessary to be certain someone close to us will be able to communicate for us. To make this easier for either yourself or another make and keep a current list of all medications and a copy of the Emergency Letter provided by the NADF in or near your emergency kit. I am providing a link where you can download and print a copy of this letter.

http://z12.invisionfree.com/apeoplevillage/index.php?showtopic=391

Also, it is a good idea to keep a current list of all known allergies.

Keep healthy...

Taking it one day at a time

2008-02-26T13:16:00.000-08:00

Most patients with Addison's Disease have a limited level of energy. This varies from patient to patient, with some having only minimal limitations and others who struggle daily just to accomplish the ordinary, every day tasks. The key is to not over-reach your strength or energy level. You can do this by deciding the most needed tasks or the less stressful, or demanding ones, if you are feeling your limitations that day. Never hesitate to rest when needed or take extra steroid if you have over-reached or say you absolutely have to do something very demanding, such as traveling or caring for a spouse or child who is ill or injured. Life goes on even though we have Addison's or another chronic illness, so we need to learn our limits, and live with those in mind.

Don't feel guilty if you can't come up to the standards set by others for you! You set your standards! Only you know how you feel! Learn to say no when it's necessary, and do not let anyone make you feel guilty for doing so!

It is also essential that you care for your Addison's with adequate steroid cover, sufficient salt and fluids for the day...sometimes this requires lots of planning and invention! But you can do it! My water bottle and I are rarely separated for long! I carry extra steroid and medicines that just might be necessary to prevent a crisis...and never be without your emergency injection.

Remember you are a useful human being who just happens to have Addison's Disease.

Another article showing hyperpigmentation seen in Addison's Disease

2008-02-02T07:58:00.000-08:00

http://emedicine.medscape.com/article/1096911-overview

This is an article from the emedicine.medscape website describing and explaining Adrenal Insufficiency. There are pictures in this article also showing the hyperpigmentation of Addison's Disease.

Surgical Guidelines/ADSHG

2008-01-04T19:08:00.000-08:00

There are going to be times when the Addisonian will need to undergo surgical procedures and there are guidelines which should be followed. The link I am enclosing is a set of guidelines in PDF format which may be printed out and taken to your doctor, hospital or dentist before you undergo the procedure. It can be much more reasurring to know that the technicians, etc. will know what is needed to keep an Addisonian stable and out of crisis, both during and after the surgery. Never hesitate to be certain that these guidelines are followed to your satisfaction and to the extent neccessary for your safety. It is your life...be proactive in your care. It is important that you know what is needed and insist it is carried out.

http://www.addisons.org.uk/comms/publications/surgicalguidelines-colour.pdf

If you are facing surgery soon, best wishes for your speedy recovery.

What Addison's Disease looks like...

2007-10-18T10:44:00.000-07:00

http://www.emedicine.com/derm/topic761.htm#target1

The above article, from eMedicine, is a detailed description of the facts and symptoms of Addison's Disease. There are images of the hyperpigmentation seen with AD included. This may be of help to those who are seeking a diagnosis as well as those already being treated for adrenal disease.

Carefully considering what you read...

2007-08-04T19:19:00.000-07:00

Being out and around the internet, I've come to appreciate the good information we are sharing with one another and how vast an amount there is available, from many varied sources. It is just this fact that must give us pause...not everything we read or are told is to be embraced as fact. We must take the information and research it, if possible, and most importantly, take it to our doctor for his opinion, before acting on it. I have seen, too often , those without a medical background offering medical advice and this is just not the purpose of forums like ours...some of it is just plain dangerous and can cause harm to the sick and frightened patient seeking help...many times already in a confused and overwhelmed state of mind. We are not here to practice medicine. Please learn from our shared experiences, but never use them to replace sound medical advise.

Preparing for Summer's heat...

2007-04-17T14:44:00.000-07:00

As the temperatures climb we will be faced with the need to keep well hydrated. As an Addisonisn keeping plenty of water on board along with sufficient salt are a must. Some prefer sports drinks, especially, as they are being more active.

I am including a link to the NADF's site discussing hydration:

http://www.nadf.us/tools/hydration.htm

Drink up! it's part of managing your disease...and keep plenty of salty snacks at hand, preferably, low calorie ones!

This is for Rosemary:

It is very difficult to find low calorie salty snacks. I, too, love potato chips (crisps) and they do really pack on the weight! Some good alternatives are fresh veggies like cucumbers, celery, radishes, even fruit, with added salt. Pickles can be a nice salt fix that has few calories. I use salt tablets to help supply my salt needs. Your favorite popcorn that is popped low fat is a great salty snack.

Hope this has given you some ideas! Be creative and look for things you like that are salty or can have salt added! We need our salt!

Winter Stress and Illness

2007-02-16T12:54:00.000-08:00

We are many of us experiencing extremely cold weather and it is very important that we take extra care of our health. Remember, we need to keep ourselves well hydrated, even when the temperatures are cold.

Also, there are lots of "bugs" out there just waiting to attack us when we least want them...be sure to avoid those who are sick ( I realize this isn't easy) and wash your hands often , don't touch your eyes, nose or mouth while out in public or exposed to the sick. I recommend the gel disinfectants for when soap and water aren't easily obtainable. Cover you nose and mouth if you feel you are being exposed to someone who is ill...viruses travel through the air.

A stomach "bug" is an Addisonian's nightmare and exposure needs to be prevent if at all possible. If someone in your family is ill use a separate bathroom if possible and spray with disinfectant often...it is also a good idea to have an anti-nausea medicine on hand to hopefully prevent a crisis due to vomiting.

Remember spring is not to many weeks away!

New Year's Message from Addisons Village Forum

2007-01-01T20:31:00.000-08:00

Do you feel that there is no point to the problems you experience due to this disease? That they don't bring any good to anyone? But they do when others see the courage with which you live with your disease, the hope you give them that they can make it as well.

I hope that this forum is helping others to learn to live with their disease and improving their quality of life...if we never meet face to face I feel that you and I have reached out to one another and touched one another's life and are the better for it. My hope for the future is that we each grow in strength and ablilty to handle this disease and not let it control us! But manage it, live with it, not let it define who we are, what we are. We can and will succeed! Share the knowledge you've gained through living with a chronic disease with others who need encouragement...that's what it's all about! Your care for others will not return to you void.

Be assured we do touch others with our lives...the things we do and say, the way we give of ourselves to others, whether they give in return or it is simply accepted, it must be given freely, without condition. We should strive to make the lives of others better for having been touched by ours...

I ,sincerely, hope this is what is being accomplished when we and others visit and contribute to this forum...I rely on you all and I appreciate you very much...thank you!

I wish you a very Happy and Healthy New Year!

Steroids and your Weight... Holidays Ahead!

2006-11-10T11:24:00.000-08:00

We need steroids inorder to survive: that's it, no options. And while there are many who do not have a weight issue, many of us do. Steroids affect our metabolism of fats, proteins and carbs...in other words , everything we eat. Addison's patients need to consume more protein and veggies...less high glycemic carbs. But please be careful of a high protein diet as it can play havoc with out electrolyes. Actually, it's best to eat a well balanced diet, including leans meats, healthy fats ( nuts, olive oil ) good carbs ( whole grains, veggies, fruits) and get plenty of rest and drink lots of water. In other words, eat well, be as active as possible, drink water , get sufficient sleep... adopt a healthy lifestyle just as the normal population is being urged to do. But as it may be harder for us to be active and as we don't always feel like eating well, we have a harder time keeping weight off and we are on steroids...it's a fact of life we must live with...it's just harder to stay slim when on steroids.

As we get ready for the holiday season, enjoy the time with family and friends, but do things that will help you resist those tempting desserts and treats. Eat before going to a party where you know you'll be tempted to eat that chocolate cookie or piece of cake...then if you feel that you just have to have it, eat a smaller piece. But don't beat yourself up if you succumb to that butter-laden treat...just eat less the next day. And lean turkey is good for you! So eat extra turkey and less stuffing or potatoes and skip the gravy. As it is a time to celebrate family and friends being together don't miss out on everything if you want something special , enjoy it and don't feel guilty about having a few extra calories...it isn't something you'll be doing every day!

Happy Thanksgiving to you all...

Medical Alert Jewelry

2006-09-25T13:23:00.000-07:00

It is very important that you have a medical alert bracelet or necklace which identifies your health conditions. There are several online sites where these items may be purchased. The Medic Alert Foundation is one.
http://www.medicalert.org/home/Homegradient.aspx

Another site that has a form which you may fill in the details of you medical condition(s), medication(s) and allergies and printout a medic alert card which then can be laminated and carried with you.
http://www.medids.com/free-id.php

These bracelets and necklaces can be very atractive and diverse in design and are not at all "unattractive". Do an internet search and you will fine some very interesting options available.

Daily Activities and Energy...

2006-09-16T14:35:00.000-07:00

With a chronic disease you have to learn to pace yourself in order to do the things that are important to you. If you only have a certain amount of energy to expend in a day ( which we all find is not nearly enough to do all we want) we must chose the most needed or enjoyable activity for the day. If your priority is to clean the livingroom today, don't try planning to clean the whole house, concentrate on the livingroom one area at a time. If you want to have a lovely dinner for your family, don't try to do the grocery shopping and cleaning first...shop another day for the whole week and perhaps have carryout that night but cook dinner the remainder of the week. It's all about saving enough of our feel good time for the things that are the most important to us!

And learn to say no! Which is not as easy as it sounds...this is something we all may find very difficult...but it is extremely neccessary to practice the art of saying no! For our health's sake. Just say no when it is clearly something you do not feel able to take on or if it would mean leaving off something that is more important to you or your family.

Living with your disease...

2006-09-09T06:28:00.000-07:00

The best advice that you can recieve is this: to learn as much as you possibly can about your illness and take an active role in your medical care. There are so many good sources of information available to you, the internet being one and your health care providers another. Ask questions if you don't understand something. Make a list of questions you wish to ask if you are afraid you might forget something.

Please do read and learn as much as you can about Addison's Disease and the proper care needed to live as well as possible...which can be a lot more normal than you might think when you first hear that you have a life-long illness and must take replacement steroids. I'm not telling you that there want be need for concessions in life and precautions taken inorder to live with the disease, but it can be done. There are a lot of good sources of information available on the Addisons Village Forum - Learn To Live & Cope site and members ready to help you as you learn to cope with your disease. You can cope!

The Tan and Salt Craving of Addison's Disease.

2006-08-25T07:52:00.000-07:00

Hyperpigmentation seen in primary Addison's Disease is caused by an excess of ACTH secreted by the pituitary gland in an effort to stimulate the adrenal gland to produce cortisol. This can be an all-over tan or in areas of pressure such as the waistline, braline, pantyline, knuckles, knees, toes, or elbows. Also seen in autoimmune Addison's Disease is Vitiligo, or areas of pigment loss.

http://www.umm.edu/endocrin/addison.htm

The craving for salt is due to a lack of aldosterone, another hormone produced by the adrenal glands, which controls sodium, potassium and other electrolytes. The medicine prescribed for this problem is Florinef.

Addison's Disease -- Causes, Symptoms and Treatment

2006-08-05T10:23:00.000-07:00

You have been given the diagnosis of Addison's Disease or Adrenal Insufficiency, you are not alone. Although this is a rare disorder, only 1 in 100,000 have Addison's Disease, there are support systems available. One of the most useful tools is the internet, where you may read articles about the disease or find a support group in your area or come together by means of a forum or message board. Support groups, forums or message boards allow interchange with other Addison's patients who have been where you are now, or ,like yourself are seeking to learn about the disease. I will be giving you links that will help you find such support and information.For those who are interested in knowing more about Addison's Disease, it is a failure of the adrenal glands, two small glands located above each kidney. Adrenal Insufficiency can also occur due to pituitary disease or injury. This is referred to as secondary adrenal insufficiency. Primary Addison's Disease is due to the glands themselves failing. This can be due to autoimmune antibodies which attack the gland cortex ultimately causing them to stop producing cortisol and aldosterone. Other causes include hemorrhaging, Tuberculosis and certain fungus infections. Patients are given gluco-corticosteroids and fludro-corticosteroids to replace both cortisol and aldosterone.
Symtoms:
Hyperpigmentation (primary Addison's Disease)
Weightloss
Fatigue
Low blood pressure
Nausea
Vomiting
Diarrhea
Salt craving
Orthostatic Hypotension
You will find much more information on Addisons Village Forum. Please visit and become part of our online support message board. Addisons Village Forum - Learn To Live & Cope.
http://s12.invisionfree.com/apeoplevillage/index.php?&&CODE=00
Here are some useful links about Addison's Disease
Mayo Clinic.com
http://www.mayoclinic.com/health/addisons-disease/DS00361/DSECTION=3
Addisons Village Forum - Learn To Live & Cope
http://s12.invisionfree.com/apeoplevillage/index.php?showtopic=745
The above link is to a compilation of useful links found on my forum.

What is an Addison's Disease Crisis?

2006-08-05T10:20:00.000-07:00

If the Addison's Disease patient becomes low on cortisol an Addison's crisis may occur. Many things could trigger a crisis: illness (vomiting, flu, infections) , an accident, dehydration. The symptoms of a crisis are: very low blood pressure, abdominal pain, vomiting, diarrhea, dehydration, low blood sugar (hypoglycemia). If treatment is not given soon enough the patient may lose consciousness and death could occur. For this reason all Addison's patients must carry an emergency injection of steroid to be given intramuscularly. The patient will need emergency care, including, if not already given or in sufficient amounts , steroids, IV fluids. Also, any underlying illness or cause of crisis will need to be treated to restore the patient to a stable condition.A very good source of information which will help an Addison's patient live with their disease is the Addison's Disease Owner's Manual, available from the ADSHG, U.K., including managing a crisis.
http://www.addisons.org.uk/info/manual/page1.html

Addison's Disease support how important?

2006-08-05T08:08:00.000-07:00

Support for the Addison's disease patient is one of the most important aspects of Addisons Village Forum. We are able to offer information about the disease and also give the opportunity to interchange with others, many who have been living with Addison's Disease for a number of years.

I personally have learned so much from others...it give us so much more understanding of what is happening to our bodies. When I am having a bad day, my friends encourage me, when I am just a little forgetful , they 've been there or are there, too! One dear forum member told me she could tell when I was having a bad day...my spelling suffered! She wasn't critical...she was understanding and that's what support is all about, my friends.

Please come and visit Addisons Village Forum - Learn To Live & Cope...we look forward to getting to know you!
http://s12.invisionfree.com/apeoplevillage/index.php?&&CODE=00