A blog to share about Adrenal insufficiency, Addison's Disease, Aspergers Syndrome, Autism, Music, Inspiration, Scrapbooking and other elements viewed through the lens of my life. I'm hoping that others who are traveling this journey may find some commonality, and maybe some information and inspiration.

Wednesday, November 12, 2014

One Year In

I haven't posted in quite awhile about my adrenal insufficiency, and I'm just past my one year anniversary, so it's time to update.

I was diagnosed with adrenal insufficiency November 1, 2013.  It's been a bit of a bumpy ride. First of all, I was surprised how long it took to get back to some semblance of a normal life. There was an immediate response to the hydrocortisone, but my body didn't exactly bounce back. It took me six weeks to have some sort-of-normal days. In the meantime, we had a trip to the Big Island scheduled near Thanksgiving, and I was determined to go. 

Walking through the airport exhausted me. Walking across the hotel lobby exhausted me. It was a very tiring trip, even though it was only for a few days. I was very glad I went, though. It was a small victory as well as very telling where my health was at that point in time.

Jump to the present: I just returned from another trip to the Big Island. I flew over at the end of a long work day, and I did fine. No exhaustion at all. We didn't do anything particularly active, but we didn't last year either. I had some tired moments, but nothing like the feeling of having to drag my body across the floor. 

Is it always this good? Nope. A few days later, I had to spend the day in bed. The hardest part of that is that you never know when a day like that is going to hit. It's not always obvious why I have a down day. Sometimes it turns out that I am fighting a virus. It might be an anniversary of a difficult event, so it's a psychological rather than physical stress. Sometimes it may be because I overdid it the day before.

Overall, though, life is much more normal. I can walk 40 minutes many days. I am still able to work, though long work days leave me extra tired. I have travelled a lot this past year to visit family, we've hosted visitors at our house. I've gotten used to having to monitor how I'm feeling throughout the day, I've gotten used to taking multiple doses a day to better emulate natural cortisol rhythm. 

So while life is not the old normal, it is such a huge improvement over how sick I was a year ago. I'm very grateful to be at this point in my journey.


Friday, April 4, 2014

Catching Up

April is Adrenal Disease Awareness Month! So please visit a few sites and educate yourself about Adrenal Diseases. You never know when someone in your life might become adrenal insufficient or suffer from one of the other adrenal diseases.


Please note that adrenal insufficiency is not at all the same thing as adrenal fatigue. The medical community does not recognize adrenal fatigue as a diagnosis. Adrenal insufficiency is not something that can be treated with herbs or supplements or dietary changes. It is an extreme failure of the body to produce cortisol, either because of adrenal or pituitary problems. Left untreated, adrenal insufficiency will lead to death because you cannot live without enough cortisol.

Since my last post, I've been to see my internist again, and finally gotten the appointment notes from my endo visit (two months later!). My internist is still convinced I am adrenal insufficient even though my endo doesn't think I am. My endo won't give me the ACTH stim test because he's "convinced you will stim just fine." I'm not at all sure why he's so sure of that.

I am very disappointed in the endo. He started out the visit convinced I wasn't adrenal insufficient, was about 50% convinced by my symptoms, but all he really looks at are the labs and nothing else. My cortisol levels are low, but not rock bottom, so he thinks I'm fine, even though I've had levels below the reference range. Try living with it like I have! There wasn't enough energy in my body to get out of bed. How is that normal?? In addition, my levels are in the range that the Cleveland Clinic says need further testing with a stim test!

My internist, on the other hand, knows me well, knows how I normally feel, knows I don't go to the doctor at the drop of a hat, and knows just how sick I was when I came in in November. He also listens very carefully to the symptoms, and since he could pretty much check off almost every symptom on the adrenal insufficiency list, that's what he diagnosed me with. And now that he's seen how much better I'm doing taking the hydrocortisone (I almost have a normal life back), he's even more convinced that I'm chronically low on cortisol without the medication.

My insurance has changed, my wonderful internist isn't in my insurance plan, but I'm not giving him up. We're now in the process of finding another doctor who will work with him in treating me, ordering farthing testing, etc. Everything takes soooo long!

I did try to cut back a bit on the hydrocortisone I'm taking - my internist had bumped it up to 30mg. early on when the 20mg he started me on seemed to do next to nothing. It took 6 weeks to start having what could be even close to a normal day. In February I decided to try cutting back just a little on the HC to see how I did. I got down to 25mg but then realized just lately that I'm having a lot of really tired days again, so I'm bumping it up to 27.5mg to see how I do. I'll give it a few weeks at that level in hopes of regaining the energy I had on the 30mg. I may just need the 30mg., though. From what I've seen talking to other patients online, 25-35 seems to be a pretty normal range required to function and avoid adrenal crisis.

Many endos seem to think that 20mg is the perfect replacement dose and you shouldn't need any more. I know this from talking online to other adrenal insufficient patients whose endos prescribe no more than 20 in spite of the patient being unable to live anything close to a normal life. I think there is variation from patient to patient on how much they need and how much they absorb. Getting your cortisol from a pill just is not equivalent to getting it from your adrenal glands!

There are a few patients who are getting their medication via a pump, similar to a diabetic with an insulin pump. But it isn't widely used at this stage. The patients who are on it say they would not want to have to go back to taking oral medications, though. Normally your body puts out little spurts of cortisol as you need it, which doesn't happen in adrenal insufficiency. The pump can imitate that much better than oral medications can.

My next adventure is a trip of thousands of miles to visit family. I'm concerned about it, even though I flew in February without difficulties. This trip is longer, with an overnight flight, which I don't do well on in the best of circumstances, and there is also a long layover. I'm prepared to stress dose as needed though. I just hope I don't spend half of the vacation recuperating from the travel. I am very excited to go though because I get to see my previous grandbabies!


Sunday, January 12, 2014

Where I Am

This lovely location has nothing to do with the blog post. Other than that I am now well enough to enjoy walks here again.

It took me a full six weeks on hydrocortisone to start feeling somewhat normal again. I am now having mostly normal days, with a few quirks I will talk about in a bit.

I did more bloodwork after visiting my endocrinologist for the first time. He is very thorough, and has other patients with adrenal problems. So far so good.

My cortisol was better, and I don't know how being on cortisol the previous month affected that. Most of the results were normal (though the cortisol was at a pretty low end of normal), but there were a few odd things. My endo says it's not Addison's but we need more testing to figure out what it is. No word on when or what yet. All of this took place just before the holidays.

I was almost panicked at that point, thinking he was going to tell me to wean off the hydrocortisone. Not that I like having to take it, but I am really pretty freaked out about feeling that bad ever again! But he didn't. He obviously feels that I've had such an improvement and since there were still some wonky things on the tests, I still need it for now at least.

So how's life going? Almost normal. I'm slowly upping the amount of time I spend walking, I'm usually able to help make dinner and clean up, I'm able to work and do chores (but I do have pace myself). I'm cautiously trying to build my strength and endurance back up, adding a few minutes of walking every week, doing some light weight workouts.

I've only had a couple of somewhat down days in the last few weeks. One was after a bee sting. I carefully got the entire stinger out right away, but I got what is known as a large late reaction, or maybe it's a late large reaction? The sting was OK shortly after I got the stinger out, but the next day it was inflamed and itchy, with a rather large firm bump at the sting site. And I had a very tired day. I didn't make the connection until the next day though, which was more normal.

So now I continue to be aware of how my body is reacting, and I wait to hear from the endo about what the next steps are. That's it!


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