Please do a favor for Shelley...

[NJO]

I hate to be a pest but until my computer is fixed I am stuck asking you to post for me.....

I was wondering if all of you could write about two things. I am having trouble with family and friends understanding that life is just not the same after having AD AND that it doesn't just get better after a time.

So if you could write how your life is different after AD than it was before......and what you wish you could do but really can't anymore. I'd like to print these off and show that it really isn't just me that others have issues long term with the AD.

Thanks ever so much,
Hugs,
Shelley

[NJO]

I have always been fragile and think the Addison's started when I was young but I used to be able to do much more than now. I loved to cook and did a lot of it, entertained family and friends...kept a reasonably clean house but not now! I used to be a portrait artist but I have lost the desire to paint, can't abide the stress. I have noticed a loss of patience for anything that requires time and concentration. Used to be an avid reader, not now, no patience. This is mostly personality issues...now for the physical...

I do not have a lot of good days when I feel like doing things I really should...I am having trouble with my electrolytes and feel so heavy limbed that I can not get around as I should...need to rest a lot. I have to carry enough medicines and water with me when I go out...it is a real bother but I have no choice. I am not as well as I was 15-16 years ago...I miss the old me. I am too fat and I was a very small person for most of my life and I feel people look at me critically because I am not the svelte old me. But this is my new reality. I will not get better, I know this, so I try not to play the what if game...it serves no purpose. I feel that many think I am not really all that sick because I don't usually look it...I feel if they had to live one day in my body they would not be so judgmental...they would be wimps and see me with new eyes, with more respect for the efforts I make...it is a real disappointment to feel so sick and not ever know if I'll be able to do something or have to pass another day on the couch. And there is always the fear of going into a crisis...I hate to be in public when I am having problems with my Addison's...it is embarrassing, I do not like to call attention to myself. I hate having this disease!

Addison's Disease is not for wimps! nor the faint of heart!

[Dianne]

We should just put all the stories together and publish a book! I will think on this and post in a while.....just came off a bad week of not being able to overcome the fatigue and more than that, my state of mind was not fun.....due to all hormonal...very frustrating...
I think this is a great idea for you to do....put it in a notebook binder and make it a 'coffee table' book ....

Just remember....you do Not have to defend yourself to anyone!
D

[Vicky]

Dianne,

I love the idea of a "coffee table" book. Now if I could just drink coffee, but the Addison thing!!

I'm with you on getting my ideas together to post. After struggling with primary Addison's for over 43 years, yes, you read it right, years, my chapter in the book would probably fit into the category of fiction; however, believe me, it will all be true.


Shelley,

There are people who definitely understand everything you are experiencing and have no doubt that you are not exaggerating the facts.

Jo,

You are such a dear to have this forum for all of us to share our experiences. God bless you.

Vicky

Gotta run take my next dose of cortisone. Just another thing to deal with with this disease. Taking medication on time.

[Wanda]

My life since since being diagnosed in 1998 is very different!! I can no longer work all day & into the night with energy to spare. I don't have enough energy in the evening to start or do much of anything. I plan my day by doing anything I really want to get done first thing in the morning. This includes going into town for whatever. I also do nothing in the evening that requires much thought. My patience goes away with the daylight!

I have to avoid being out in the heat for long periods & "stress" of "any kind". To do anything outside of my normal day I usually have to increase my HC.

Like Jo...I no longer read books or do my oil painting & pencil drawing. I just took all my oil paints to a place that will dispose or recycle it. I still keep thinking I will get into water color or acrylics. There is something very important missing in our replacement medications!! Why can't we concentrate & put in a good days work?

I take water, HC & an emergency shot with me everywhere. I go to bed with water & HC on the table next to me.

I am lucky that my sons/DIL's & Martin seem to understand that I am not the strong person I used to be. When I have to rest.....I rest!!!

Wanda

[Dianne]

Vicky....its decaf only unless I am taking a long car trip then I'll get one caff coffee for the rd....

A coffee table style book and then the bathroom reading edition.....just to be sure everyone sees it.!! Or we could do recorded oral stories, make a cd for ppl who need it....slip it into the car cd players etc....Anyone have the energy to work on this? Ho ho ho

Diane

[Shelley bob]

Thanks Jo and Wanda for your input. I think this could help alot of us...I KNOW it will help me in my situation. When you are the only person that anyone has ever heard of having this disease I think it helps for them to hear from others that have it so they know that this is the way it really is, and that you aren't a whimp or exaggerating.
I'd really love it if we could get more people telling their before AD and after AD stories....doesn't have to be long just what is the most frustrating for you.

THANK YOU!

[Maureen]

Shelley,

http://moisbloggingithink.wordpress.com/2011/01/27/a-repost/

Here is a post that I wrote a while ago, maybe this can help your family and friends understnad a little bit.

mo

[Kimberly]

Before I was diagnosed with Addison's Disease I was very outgoing, very involved with company activities, committees, you name it I did it.

I was diagnosed with Addison's Disease in 1992 at the age of 36. From day one I have struggled with anxiety, mood issues, depression, concentration issues, heat issues, environmental issues, emotional stress, physical stress. I got to the point I was not able to leave the house (except for work). I missed a lot of my daughters sports activities as she was growing up. I hated it. I worked and struggled for years. In 2002, I just couldn't do it anymore. Left work one day and never was a able to go back. I worked at my job for 27 years and was a dedicated employee. But when I started lying about why I couldn't come to work, I decided it was time to leave. My boss knew I had Addison's Disease, but I was too embarrassed to have to explain my absences. It was too complicated to explain and he didn't understand. I always felt like he thought I was faking it. I applied for disability and after being rejected I hired an attorney and after four years was approved for disability.

Everyday is different for me. I would not be able to hold down a job because I would not be very dependable. Most days I don't do a whole lot. My husband, whom I love so much, does all the grocery shopping, cooking and laundry. I feel pretty worthless. Trying to cope with this disease is not a lot of fun.

[Gwen]

Reading these responses made me really sad. I never realized how much your lives have changed while mine has changed very little since being diagnosed.

Gwen

[FindingLana]

I am currently part of a research study into Addison's/Adrenal Insufficiency and basically to the degree it impacts our life. The head researcher told me that each person is different. Some people never have an issue, it depends on which end of the spectrum they reside. Some just never have anything more bothersome other than taking new medications while other people get so sick that they cannot survive. There is no ruler. For those of us living in between, it can be very difficult. Life can be a constant struggle. The researcher said there is a combination of circumstances that can make a huge difference and an early diagnosis is looking like a bit of an important key. Since it is a rare disease, many people will staying it "what did you say?" mode because it is just too heavy to process. Others have mental blocks and since they can't understand the definition, they pretend it doesn't exist. Either way, we must do our best to live with as much joy and as much functioning as we can, every moment we can. For the other moments...hold on for the ride and wait for the next good moment to swing by!!! As for me, this disease has drastically altered my life. I've been on the bad end of Addison's too many times - to the point of going comatose in the hospital - while charted as an "Addison's patient" and still did not get the emergency treatment needed until my family began throwing a fit. Sadly, this should not be necessary, but many in the medical field also do not realize that when you need an urgent injection, you need it URGENTLY. Time is of the essence. Period. So, I've not always had great experiences and it makes me permanently leery in any setting outside of my safety-zone with those who know how to act quickly on my behalf, if I cannot do it myself. Yes, my life has changed indeed.

[Kimberly]

Once everyone has posted their "How Addison's Disease Has Altered My Life", I will try to put them together and mail them to whomever wants them.

[Kimberly]

I hope I didn't scare everyone off. Your stories are welcome!

[NJO]

I will also add the stories to our forum, Members Stories...we tend to lose these threads as they progress further down the list.

[Vicky]

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 Addison’s Disease can be complicated for many. Although not all of us with the disease experience the same daily problems, the basis of living with Addison’s is a daily challenge.

For a person without Addison’s, the body starts to produce it’s 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. It’s the body getting ready to face the challenges of being awake during the day.
Night time comes. You start getting sleepy. It’s 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 there’s 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 Addison’s 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 don’t have the energy it takes to perform “normally”. 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 don’t do this. So, it’s 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 we’re 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 – 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 didn’t 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 don’t 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 you’re 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. Didn’t 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. “Fight or flight” and you’re 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 don’t 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 “stress”? No extra steroids in our system until next dose time. I’ve seen 9 or 10 endocrinologists (specialists in Addison’s Disease) over the 40+ years I’ve had this disease, and they all tell me that the only time I should increase steroids is if I’m 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 I’m sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, I’m limited to ___mg. of hydrocortisone. When it’s gone; it’s gone.
There is really no conclusive study I’ve 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 “normal people’s” bedtime. It doesn’t 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 I’m low on steroids. I take what endocrinologists call a stress dose. It’s 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. I’m 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 there’s still too much steroids floating around the system, you can’t fall asleep. That’s the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good night’s 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, I’m 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 doesn’t take long to happen. I’ve 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 I’ve learned what to do to avoid these problems and crisis. Unfortunately, it means that I can’t 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 wasn’t 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 didn’t find out about this until I’d had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, I’ve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin; "moon face” as it’s referred to – puffy cheeks due to retaining fluids from taking too much cortisone – 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 Addison’s 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.

Addison’s 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. I’ve read that it affects 1 in 100,000 people.

I’ll leave you with this type of problem those of us with Addison’s Disease face: I saw my endocrinologist a month ago. He did remind me to have lots of salt, since we’re 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??

Vicky