Twelve years ago this month I was diagnosed with a condition that would change my life completely. With a “diagnosis” everyone assumes there is a “cure” and that life will get back to normal eventually. But, that didn’t happen. I understand that I am very lucky that my condition is treatable. If I take care of myself, take my medications and see my doctors regularly this disease shouldn’t shorten my life. But, it has changed my life.
I cannot get used to the fatigue. Over powering fatigue. Debilitating fatigue. Can’t sit up fatigue. So weak you hold your pee until it hurts fatigue because the bathroom is so far away. Feel like you have the flu fatigue. Miss every party and get together fatigue. Frustrating fatigue. Hard to cope fatigue. Impossible to explain fatigue.
Every night when I go to bed I think to myself that tomorrow I will feel better. Sometimes I do….and then I must remind myself to not overdo it…and if I do I will pay for it for days.
Happy anniversary. I am having cake.
My hubby Joe has been home since Friday doing some DIY work. Because he has been spending so much time in the house he has been re-aquainted with the unpredictability of my day to day activities. He has dealt with my illnesses along with me since 2001, and has been there through everything. He understands that my energy level can change quickly. He understands that I cannot leave the house if my Crohn’s monsters are visiting. He understand that I might spend the morning sleeping, and then still need to rest in the afternoon. He understands that my pain levels can be minimal for days and then be doubled over with cramping and spasms with no warning. He knows that planning something doesn’t mean it will really happen.
Today I am totally exhausted. I changed the sheets on the bed and it knocked me out. I am pissed at my body today.
The adrenals are such tiny little things and so is the pituitary gland….so why are they such a BIG problem? I often joke and say that my pituitary went on vacation and never came back, so my adrenals don’t know what to do.
I was diagnosed with Isolated ACTH deficiency in 2001, and haven’t been well since. ACTH is a hormone made by the pituitary gland that signals the adrenals to produce cortisol. But, like I said my pituitary gland is on vacation. In my case, there is nothing that points to why or how I developed this disease.
I am always interested in how other people were diagnosed and how others cope with their condition. Although my doctor is well-informed, and treats a handful of patients with some type of adrenal disease, I understand I am lucky. I have heard horror stories from other people about their doctors who just don’t get it. So, what can you do to make sure YOU understand what is going on with your body?
If you have important hints to share, please do. Below, I am sharing some of the most important links and interesting people that I have found to learn more about various adrenal diseases.
Addison Village – Here you will find a wonderful group of people who are knowledgable and willing to share all their ups and downs with anyone who asks. I learned more from this group than any other website
Finding Lana – A great blog written by a woman with Addison’s Disease, lots of information on her blog!
Simply Suzanna -Suzanna always has something cheerful to say, and her blog is pretty to look at too!
Hypogal – Lisa, who has Sheehan’s Syndrome shares her story with her readers on this wonderful blog.
Addison Disease Facts – A Blog written by my friend Jo, who also helps people through her website Addison Village (mentioned above)
This has nothing to do with Addison’s Disease….I just like it!
I am at my nerve’s end with all of this. I had labs done and talked to my GP at the beginning of last week. Negative for RA, sugar is OK, potassium and sodium still good. Nothing really to help explain the unrelenting fatigue and weakness…EXCEPT…my TSH is low at .096. Now, I must admit I don’t know much about the thyroid, even though I have been on meds for quite a while. Everything has always been fine, take my cute little green pill and worry only about my cortisol levels. (GP did tell me that normal range is 0.5 – 5.0, so my numbers do sound low.???) BUT if I am indeed hyperthyroid, I am showing none of the classic symptoms. I have lost my appetite and some weight, which has made me happy, but not if it is caused by over active thyroid.
And even though my labs showed no infections, bladder or UTI etc, I am running a low-grade fever on and off. Usually about 99.3 – 99.5.
So, my GP sent a FAX to my endo and I expect to hear from her (hopefully) by Monday.
My sleep has been totally screwed up, trouble falling asleep at night, and trouble staying asleep at night. That’s a given with chronic illness I know, I see quite a few of my buddies on-line in the middle of the night.
Let’s hope Dr. Endo-Girl comes up with something……………sigh.
This is a repost from a closed blog.
Starting in 1985, I had one medical problem after another. Two babies, an ectopic pregnancy, a miscarriage, 9 surgeries for gallbladder, cysts, hysterectomy and a bowel resection…but nothing could have prepared me for what happened to me in 2001.
I was so sick I couldn’t get out of bed. I was exhausted, weak, I couldn’t eat, I was confused all the time, and all I did was sleep. I had debilitating fatigue, muscle weakness, cramping, low potassium, and nausea. The doctors kept attributing all my problems to my Crohns. But I knew it was something else.
After several ER visits due to extreme weakness, I was finally admitted to the hospital by my Gastroenterologist. You know those doctors that tell you they ran every test in the book and didn’t find anything? Well this guy DID run EVERY test in the book, and he solved the big mystery
I had never heard of it. Adrenal insufficiency? What does that mean? Where are your adrenal glands and what the heck do they do? What does the pituitary gland have to do with all of this? What is cortisol? ACTH? DHEA?
And the biggest question “why didn’t someone figure out sooner what the hell was wrong with me?”
I saw my Sister’s endocrinologist, I went to the University of Chicago Hospital, and I took a trip to Mayo Clinic in Minnesota. None of these doctors could make me well. I was told to take my meds and I should feel better. How many of us have heard that line?
Because my endocrine system is shot ( pituitary, adrenals, thyroid and ovaries) I am a hot mess.
The most important hormone the adrenals release is cortisol. Cortisol is the “flight or fight” hormone, it helps you handle stress. Major stress, such as injury or illness, dehydration, low potassium levels, vomiting, fever or an infection can throw you into an Addisonian crisis, which requires immediate medical attention.
I have had many trips to the ER in an ambulance and too many hospital stays to remember. When a person goes in crisis, IV steroids must to given to keep the patient from going into shock. This can all happen very fast. I keep a supply of steroid injections on hand so if needed, I can give myself a shot before I head to the hospital. Because I take steroids everyday, infection or illness can be easily masked. Just as people take steroids to help with inflammation from allergies, asthma or rashes, my steroids can hide a problem until you are very sick or in pain. In 2005 I had a severe diverticulitis attack without even knowing what was going on. The steroids kept the inflammation at bay and the infection hidden so I didn’t have pain. One morning I woke up in terrible pain and I ended up in the ER. An MRI showed a mass in my colon and I needed emergency surgery to remove and repair the damage.
There are so many side effects for a person on daily steroid therapy. It can damage bones, the lining of the stomach, weaken your immune system, can cause cataracts, depression and insomnia. Even GOOD stress can land me in the ER.
It doesn’t have to be something bad to affect your stress level, and with no cortisol, an Addisonian is in big trouble. Many times my family noticed I was in trouble and got me to the ER. Confusion is one of the first symptoms for me, and then I just get stupid. I don’t even realize what’s happening to me.
I have to wear a medic alert bracelet, and I keep a list of all my meds in my wallet, as does each of my family members.
My life has been forever altered by this disease. Days, weeks, months and years have been robbed from me because of my inability to function. From one day to the next I never know how I am going to feel. Sadly, I have more bad days than good. My family has been there for me always, and for that I am thankful.