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 27, 2013

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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Friday, November 22, 2013

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!

- Posted using BlogPress from my iPad

Saturday, November 16, 2013

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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Generic Problems

I am now two weeks post my diagnosis of suspected adrenal insufficiency. Here's an update.

One of the things I've been doing while bedridden with fatigue is to read forum posts on this condition, as well as joining a support group. One of the topics I ran into was that some people were having trouble with a particular generic drug (made by Qualitest). It turned out to be the one I was on, which I discovered by calling the pharmacy one morning when I mustered enough energy to pick up the phone.

I might add that, in spite of being on what should be a fairly accurate replacement dosage of hydrocortisone, I was still dead exhausted, having digestive issues, and losing a bit of weight.

I decided to try switching to Cortef brand, which is about three times as expensive as the generic, but potentially worth it. My doctor agreed to rewrite the prescription, my husband picked it up for me, and I started it a few days ago.

Unfortunately, I also came down with a cold at the same time, so it's a bit tricky to assess how that is going. So far, though, I noticed less digestive problems the first day.

Day two was a banner day. I was actually able to do a few light chores around the house (with lots of rest in between). It was noteable because I have not been able to do any for weeks. I actually wanted to start a load of laundry. I was careful not to overdo it.

Day three was not so wonderful. While I had beaten back the cold with a slight dosage increase (per suggestions from The National Adrenal Foundation) plus ample vitamin C and oil of oregano, which seems to work really well on viruses for me, I started out with my traditional post-cold headache, which I think is a migraine induced by sinus swelling. It happens every time I have a cold or sneezing due to allergies. It also makes me tired. My daughter, who lives a very long way away from us, got admitted to the hospital the night before in a lot of pain, which they weren't sure of the cause of, and my three lovely grandchildren were in the care of a friend because my son-in-law's work had him on a ship in the North Atlantic!

All of that added up to a lot of stress for me, of course.

Being new to this whole AI thing, I have no idea when I need to bump up my dosage for this kind of stress. The guidelines are clear for things like fevers, vomiting, and diahhrea, but each person has to figure out what makes them need those smaller adjustments.

I got very very weepy. I felt so badly for my daughter and her stressed out children. The youngest has autism and has a very difficult time with sudden changes of circumstance. Mommy in the hospital was very difficult for her.

Thanks to my support group, I was advised to take a small extra dose of HC. Within 30 minutes the excessive weepiness was gone. I now know that is a sign for me to watch for, a clue that I'm getting too low on cortisol.

Needless to say, the day was a wash as far as energy goes. It all went into coping with the headache, the crying, the worry about my daughter and grandchildren.

Things are better today. First of all, they finally have some direction regarding my daughter's care. Her father-in-law was able to make the rather long drive to their house to take care of the children until their dad gets home. Their dad will be home tomorrow.

My headache is no better, but I went with my husband to sit at the beach this morning anyway, my first excursion out of the house other than for doctor's appointments in weeks. It used a lot of my spoons but it was worth it.

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Saturday, November 9, 2013

One Week

It's been a week since I started on hydrocortisone for suspected adrenal insufficiency. The blood work is not back yet, and that will likely be just the beginning of testing.

So how has this week gone? Not as well as I had hoped. The first few days I saw glimmers of improvement. Definitely. By day 6, I was able to make it through my longest work day, barely, in spite of having to take my husband to the airport at 3:30 AM. Maybe because I took an extra dose of hydrocortisone per the suggestion of others who have AI and have learned by experience.

Day 7 was another story. I had to be at the doctor's office for routine testing for my annual physical (my doctor is very thorough). Since my hubby was gone, I had to drive myself in. And drive myself home. By the time I was home I was done in. Back to bed I went. And there I stayed. I needed several naps. Then I had to drag myself back out of bed to pick my husband up at the airport. As soon  as we got home, it was back to bed.

I'm still there. However, there's still hope for a better day. One thing I noticed this week was that I tend to feel a bit better after  I've had the final bit of hydrocortisone. Not sure why to is, since it's not accumulating in the body (it's apparently gone by 6 hours). Maybe because the body's need for cortisol is low in the evening anyway? It didn't happen yesterday, but I'm hopeful for today.

I am very thankful to have a long weekend. Maybe I'll recover enough from yesterday to work a short day Tuesday.

So much to learn.

Wednesday, November 6, 2013


As is sit here thinking about the implications of my current condition, and the other chronic conditions I have I'm wishing for a charm bracelet with little ribbon charms for each one. Right now I'd have 5. But if I included things my children and grandchildren have! oh my! Extend that out to extended family and friends, and there would be a rainbow of ribbons.

It's pretty amazing because I've always thought of myself as a pretty healthy person. Migraines and painful, long periods aside. I never ran to the doctor for much of anything, and didn't get annual physicals annually.

It wouldn't have helped any of my current conditions. One of the hard things about chronic health issues is that they can sneak up on you. Sometimes over the course of years. Decades, even. Small, subtle changes that are easy to disregard and wouldn't alert your doctor to anything because they are vague and non-specific for any one disease.

As I was looking at a new hyper pigmented spot I discovered last night, one sign that is pretty much flashing a "it's your adrenals" sign, I remembered that I have had a pigmented spot on my leg that comes and goes for most of my adult life. One of those things that, looking back, might have been significant, but who knew? I've certainly had many times where I was so exhausted it hurt, but eventually, with rest, I got some energy back.

That is until my thyroid started getting attacked by my immune system. That didn't get better until my doctors figured out what was going on. Then I had a few pretty good years. Until my postural hypotension kicked in with a vengeance. That set me back into no energy land and exercise intolerance. I gradually worked up my endurance to the point of being able to take a 40 minute relaxing walk most days.

But my immune system has not stopped it's offensive, and now it seems bent on destroying my adrenal glands as well. This is the most likely cause of my suspected adrenal insufficiency. Around 70% of adrenal insufficiency in the developed world is due to autoimmune disease. And having one autoimmune disease increases your likelihood of developing another.

Since I already had two and possibly 3 autoimmune conditions before, I'm betting on an autoimmune cause here. How about a cure for autoimmune disease? That would be totally amazing.

So yeah, I want a charm bracelet. Mostly as a reminder that we can survive a lot, and we are fragile at the same time. And that we are all lucky to be alive.

- Posted using BlogPress from my iPad

Tuesday, November 5, 2013

A New Twist in the Journey

You just never know what life will bring. I've had a few health challenges through the years, some of which made me miserable for quite some time until a diagnosis and treatment was found. Some have altered my life, most not much, not yet.

But the last few months have brought on a new challenge. Let me back up a bit to say that I have a couple of autoimmune diseases which is potentially very relevant.

Starting in September, I started a not-so-slow decline in my health. I finally got so bad last week, I had to miss work because I didn't have any energy to even get out of bed unless the need was urgent. So I finally went to the doctor. I had my suspicions about what was wrong with me, and after listing my symptoms (but not telling him my suspicion) my doctor came to the same conclusion. Adrenal insufficiency. This is a rare disease/disorder, but as my doctor said, rare means it does happen to some people, and if the doctor is unaware he won't see it when it happens. I was not overjoyed to have my suspicions validated, but hugely relieved that I just might start feeling better.

I had to go back to his office the next morning for an AM cortisol test, which we are waiting on the results. I just hope they are conclusive and not vague. I don't want to have to start a long expensive search as to why I have all these symptoms. He was convinced enough based on symptoms (I had every one of the classic symptoms over the last couple of months) to start treatment right after the blood test.

So what were my symptoms?

It all started with very strange leg cramps. At night or at rest, but unlike typical leg cramps. More like sudden tetany. Often preceded by "ripples" running up my calf. Then my muscle cramped so hard I couldn't get it to relax without standing on my toe and using body weight to counteract the spasm. Not fun, I'll tell you. I've rolled around on the living room floor moaning and crying more than once with repeated spasms. I realized that any time I used my muscles for exercise (as "strenuous" as an easy walk) I was pretty guaranteed to get a series of bad cramps. First sign something was amiss.

One day when I was walking (I'm pretty stubborn about getting my walk in in spite of the cramps), I had an odd "spell". I felt weak, shaky, and just not right. So I rested. It gradually went away.

Pretty soon I was too tired to walk my usual distance. This became shorter and shorter, until 5 minutes was too much. Pretty soon I was having to spend every moment I wasn't working in my bed resting and sleeping. Until I couldn't even get up to work.

Meanwhile I lost my appetite. Now, I normally love good food. I weighed a good 10 pounds above a healthy maximum for my height. But suddenly I just didn't have any interest in eating. I lost 11 pounds over the last two months without trying. That is definitely not me. Ever since I put on weight with my descent into hypothyroid, I have had a real struggle losing any weight at all, even with replacement medication. I have to say, I don't mind the weight loss at all. I'd be thrilled to lose another 20 pounds, down to my young adult weight, but not if I have to live with zero energy and zero life to do it.

My blood pressure dropped. For many people that would be an excellent thing, but not for me. I have orthostatic hypotension, which means that my blood pressure drops too much when I move from lying to sitting or sitting to standing. I've been on medication for it for a couple of years, and that normally puts it right in the BP sweet spot, around 120/80. Now it's variable. So not always low, but I've clocked it down to 90/60. And sometimes 140/90. Wonky.

Then I got a migraine headache, due to allergies. Normally I just have a headache for a few days. Nasty, but I know what to expect. Not this time. I felt sicker and sicker as the day wore on with nausea (not a normal thing for me with these headaches). Suddenly, overwhelmingly, I was vomiting. Sorry, TMI, but important information if you are developing adrenal insufficiency. This was on my birthday. I was just glad we had already celebrated, so I could just go to bed. I've only had this happen once before, a year ago, after a upper respiratory illness, without having a stomach bug of any kind. Normally I have an iron stomach.

I started getting a low level ache in my flank area. Not kidney stones (I know that pain all too well). Nagging but not painful. And I just kept getting weaker and weaker. And slower and slower, in body and in mind. Walking up the stairs became like climbing Mount Everest.

I started reading things online related to these issues, and adrenal insufficiency or Addison's disease kept cropping up. At this point I had all the symptoms except skin hyperpigmentation. This is a common symptom, but only in patients who have primary adrenal insufficiency, caused by failing adrenal glands. There are secondary causes (pituitary and hypothalamus) that don't get the pigmentation.

I kept reading, looking at pictures of hyperpigmentation, which are always extreme cases and often people with a lot more natural melanin than me. They weren't very helpful to me.

I finally stumbled on a photo of someone who had been diagnosed who looked as naturally pale as I am. I looked down at my own palm crease to compare and was shocked to see that my palm creases looked kind of yellow-ish brown, just like her photograph. They are normally quite pink. Yikes! Check off the last symptom.

I thought I'd just bring all this up the my doctor at my annual physical, which is in a few weeks. But then the insides of my wrist and my armpits started turning a muddy looking tan.

And I couldn't get out of bed. Finally my husband told me I had to get an appointment immediately. I'm so glad I did.

First of all, I have a great internist. I'm pretty sure he's been on the lookout for this due to my autoimmune and orthostatic hypotension issues, both of which make it somewhat more likely.

I'm happy to say I am beginning to feel a little bit better.

Here's my days so far on hydrocortisone, which is replacing what is missing in my body:

Day 1 - I was able to be out of bed in the evening for a few hours without longing, needing to lay down.

Day 2 - I was up a bit first thing in the morning, down again, forced myself to work a few hours (exhausting), down again, but rested enough to be up again in the evening

Day 3 - Upright a few hours in the morning, then resting but not as totally wiped out as last week. I do have to work today, though I wish I didn't. I'm self-employed and technically that means I can take off if I need to, but my income is nil when I don't work, which isn't good going into having to pay cash for tests because I'm uninsured. So I'm going to work. At least today. We'll see how it goes and if I think I can stand it another day or need to take off the rest of the week. My body says I need to heal and that means rest. Sigh.

- Posted using BlogPress from my iPad