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.

Patti

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.

http://www.addisons.org.uk
http://www.nadf.us

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!

Patti

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!

Patti

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First Trip

I have successfully navigated my first trip since being diagnosed with Adrenal Insufficiency. It was a short flight and a short trip. It was surprisingly challenging, at least the process of getting back and forth.

We had a flight Saturday morning. It's about 30 minutes from here to the airport. Then there was the walk from the car to check-in. And the standing in the security line. And the walk to the gate. I realized while we were waiting for the flight that I had burned through my first dose of cortisol in 2-1/2 hours whereas I'm usually good dosing every four hours. So. I took my second dose early and made the decision that I would continue dosing in my usual stepped-down fashion throughout the day, which would mean a bit extra by the end of the day.

Nothing particularly stressful happened, it just takes so much energy to get from home to the plane. Way more than I ever realized in my pre-illness days.

It was a short flight, and we were soon at our destination, and driving away in our rental car. My husband did a lot of driving that day and I did a lot of enjoying the scenery. I did pretty well but was very tired by early afternoon. We could check into the hotel by then so we headed there. The downside of the lovely hotel we stayed at was that it is huge which meant a lot of walking was sometimes required. Well, a lot by my current standards anyway.

We had a short afternoon rest, then had to leave again for dinner at one of our favorite restaurants. Since my energy picks up in the evening (probably because less cortisol is required in the evening), I really enjoyed dinner and felt pretty good. By the time we got back to our room, though, I was once again really tired and ready to read in bed.

Day two we enjoyed a lovely breakfast at the hotel, took a drive, then walked through a few open houses. That was fun but really tiring, so we cancelled a few other things that were on our list and went back to the room to rest. Dinner the second night was at the hotel, which involved a bit of walking, but not too much.

Sunset was gorgeous.






Day three was my favorite because I got to see a dear friend who had just arrived on island. They recently retired from the Air Force and have moved back home to stay. We had a lovely day together, checking out some of the art displayed at the hotel, eating, and chatting. It did involve some walking, which is both good and tiring. I really want to build back some stamina, but feel like I need to be a bit cautious to avoid overdoing, and I don't want to have to bump my medication dosage all the time to compensate for my sorry state of muscle weakness. By the time we were ready to move on, I was getting pretty droopy again. A nice rest at their condo followed by a delicious dinner revived me enough to get back to the airport and on the plane.

Waiting for the flight was tiring, even though we weren't there that early. The plane was a few minutes late, and there were no seats available in the waiting area, so. I had to stand. I was very glad we had pre-boarding, and can totally understand why ambulatory people with health issues often need to use a wheelchair at the airport. I needed a little bump in medication by the time I got on the plane.

Today I'm feeling the post-exertion fatigue, but I expected that. I'm glad I had this little mini-trip to test the waters. I have a long flight scheduled for February. I'm hoping to be feeling a bit better by then. Sometimes it takes many months to really get back on your feet after diagnosis, but I'm hoping for the shorter end of that. But if I'm still in major need of rest and recovery, I'm at least a little aware of the energy requirement needed to survive the trip, hopefully with only a bit of residual fatigue and slight adjustments to medication.

In all it was a very successful trip. I'm beginning to adjust somewhat to the fact that I have to monitor how I feel so closely. I think that has been the biggest adjustment for me to make in learning how to deal with adrenal insufficiency. I am aware that my health status can change suddenly and I need to be prepared to deal with it appropriately. At the same time, I did pretty well and I'm learning to read my symptoms and need for extra rest and/or medications a little better every day.

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New "Normal"

I am starting to get used to what is my current "normal." Here's how the days are going:

I start off the day with my first dose of hydrocortisone and fludrocortisone. I sit in bed and read for awhile to let the HC kick in, then I get up and have a cup of coffee or tea. I've had to lighten up on the beans in the coffee because it stresses my adrenals, but I seem to be OK with a smaller amount of lighter coffee. I'm hoping to be able to continue to manage one little cup every day just because I really like coffee! I'll be looking for a really good decaf when our current stash runs out.

I enjoy more reading while I drink my coffee. Then, if my husband and I are feeling up to it we take a short drive to the area where he walks and I sit and read some more. Someday I hope to be able to walk a bit again myself. If we aren't feeling up to it, back to bed I go, but these days I can usually sit up instead of lay down.

I always feel close to the edge of exhaustion, even on the best of days.

My work day normally starts in the early to mid-afternoon, and lasts for 3-4 hours generally. I work at home, which is an immense blessing right now because I can still manage to work even though it is very very tiring. If I could afford to retire right now it would be tempting even though I love what I do. I most definitely could not commute to work and put in a full day.

I have to allow plenty of time to get ready because after a shower I need to sit and rest before I get dressed. Every little job that people normally think nothing of actually takes a surprising amount of energy for me. I have to plan for the extra time, and figuring out how much time to plan is somehow a hard thing for my brain to do right now.

If it's not a work day I can manage to do a load of laundry plus a few other low-energy chores like sweeping the kitchen floor. I might add that none of these are done with speed! I have to rest often. Do a bit, rest. Do a bit more, rest.

Evenings are better. Our bodies need less cortisol in the evening, so I think that's why I am less tired then. Sometimes I can help a bit with dinner if I rest a bit right after work. Thankfully my husband has learned to cook some and he routinely cleans up after dinner. He's been a trooper through this so far. He even mopped the kitchen floor, a chore he once said he "doesn't do."

If it's a bad day, I'm just pretty much in bed with no energy to move. This is most often due to a headache or over-doing it the day before, or a cold.

Sometimes I need to go to bed by 9. Sometimes I'm up till 10:30. Sometimes I wake up every couple of hours through the night (people with much more experience than I say that can be due to low cortisol), sometimes I'm out like a light for the duration.

It's pretty challenging because each day has to be taken on its own merits. Each day has its own unique set of circumstances, to which a normally functioning adrenal gland responds automatically, but requires awareness and adjustment for those with adrenal insufficiency of any kind. Each day is its own adventure. And that is my new "normal."




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Generic vs. Cortef update

First of all, let me tell you I lost a a rather long blog post the other day. Poof, it disappeared. I'm not at all sure what happened. I did not have the energy or the will to rewrite it. Bits and pieces may resurface in my brain, and appear here. Or not. Who knows?

It's time to do an update though.

The switch from generic (the brand was Qualitest) to Cortef was a good move. My digestive problems disappeared. I actually started getting a bit hungry from time to time, and I no longer felt sorry after I ate a bit. Thumbs up for Cortef!

I was still very very tired, and fellow adrenal insufficiency patients (hooray for online support groups!) said my dosage was pretty low. I had an appointment with my internist this week, and after listening to how I was doing, he agreed it wasn't enough for me and upped my dosage to 30 mg. It has made a huge difference.

Do I feel "normal?" No. I still am at the edge of exhausted pretty much all day. I still feel the need to go back to bed for awhile after I've been up a few hours, and I need to rest often.

But, I have been able to get through even my longer work days, which are not long hours-wise but require a lot of focus and a fair amount of mental energy, feeling only a little more tired than I should. A bit of rest and I'm somewhat recovered.

I forgot to mention that adrenal insufficiency was confirmed by the AM cortisol test. I'm still producing some, but not enough. The next step is to see the endocrinologist and see what further testing he wants to do. An ACTH stim test is bound to be on the list, to see if my adrenals can respond to stimulation. I'm going to ask for an antibody test as well, since I have a few other autoimmune issues already and most cases of primary adrenal insufficiency are autoimmune in the U.S. and other developed countries. I'm bound to be primary due to the hyperpigmentation.

In discussing stress dosing with my internist, he explained to me that under normal circumstances healthy people produce about 20-25 mg. of cortisol per day. But under severe stress, healthy bodies can easily put out ten times that amount.

This made me realize that it is not a big deal if I need to take an extra 5 mg. for a few days due to a cold, or an extra 10 mg. for a mild fever. Or even a double or triple dose for a fever over 99.5°F., vomiting, or diahhrea. These doses can help me avoid a trip to ER and I need to be prepared to take them when I need them.

A common cause of adrenal crisis, which is very serious and can be deadly, is not taking enough of a stress dose early enough. I hope to avoid that mistake if at all possible.

Due to the fact the my mind gets very slow when I'm low on cortisol, I have the stress dosing guidelines saved as a document on my iPad as well as printed out. I do not want to have to remember where I found those guidelines when I'm ill or heading into a crisis.

I have also printed and laminated my diagnosis, emergency protocols, and my doctor's contact information on a sheet kept where my husband and son can easily find them. They've got instructions to just hand it to the EMTs if we ever have to call an ambulance. This is such a rare condition, most doctors never see a single case, and emergency room personnel will most likely not know what to do.

My medical ID bracelet is on its way. I don't yet have a two month supply of Cortef on hand, which is a recommendation I have read, and I don't yet have an injection kit. I'll be asking for that when I meet my endocrinologist in a couple weeks.

So overall, things are definitely improving around here. I might be able to do a few light chores today since I don't have to spend any energy on my job today. Even being able to do a few loads of laundry is a huge improvement in my life. Being as ill as I was gives a different perspective on those pesky little maintenance chores. Now I'm thankful for a day with enough energy to do a few of them!


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Charming 2

Last week I posted that I was wanting a charm bracelet. I thought about it a lot, used my many hours in bed to check things out on the internet, and made a decision. I decided to start a European style charm bracelet, but not to use the traditional ribbons. I don't want a dangly bracelet. It isn't my style.

I decided to just buy beads I love that have some kind of connection in my mind rather than an obvious awareness ribbon style. For people who don't know, it will just be a pretty bracelet. But I will know the significance of each bead.

I took the plunge and bought this as a starter. It was my birthday present to myself. I needed a little pick-me-up the midst of my health issues.










The white has double meaning - they are little tiny chips of opals, my birthstone. Plus white for osteoporosis.

The dark blue is the color for dysautonomia awareness, which includes orthostatic hypotension, and the lighter blue is for Addison's Disease.

I may get a zebra bead, traditionally used for Ehlers Danlos, which my son may have, but for me symbolic of rare, unseen diseases. The medical community is trained to look for the common frequent answers, but as my wonderful doctor says, if you don't look for rare diseases, you will never see them.

"When you hear hoofbeats, think horses, not zebras."
(Theodore E. Woodward, MD, University of Maryland,1950)

There are a lot of people who are zebras. They often struggle for years to get a diagnosis and suffer needlessly.

I plan on adding birthstone beads bit by bit for all the lovely people in my Ohana.

I wanted something beautiful. A reminder of beauty in the midst of suffering. A reminder that we are strong and yet fragile.

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