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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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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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.

Charming

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.

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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.

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Food for Thought

Some food for thought over at Paid to Exist


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Dinner and Guns

I know, an odd combination of topics. Oh well.

First, dinner:

I'm making Thai red beef Curry from this cookbook. We made it last week and decided it's worth repeating.

Because I work until 6 PM most nights, we either need dinners in the crock pot or things that cook quickly that my husband is willing to make. I'm too tired at the end of the day to start a cooking project.

Here's most of the goodies in the crock pot this morning (minus the meat):





And here's everything mixed together, and the lemongrass from the garden added:




This lovely hunk of meat (grass fed from Molokai) will go into the pot once it's browned:


Cauliflower (a substitution for the eggplant) and sautéed mushrooms (an addition we decided to try) will get thrown in later.

I'm trying to stay pretty closely to my autoimmune protocol (no nightshades, which includes peppers and eggplants, potatoes and tomatoes) but every once in a while I am experimenting with a bit of peppers as seasoning. So far I have not seen any ill effects. Tomatoes, which. I love, are another story.

So that's dinner.

Now to guns. Since the shooting in Washington, I read an articles like this one. I think they make total sense.

After all, it is very true that the vast majority of gun owners are never going to shoot anyone. My sons and friend own guns. They enjoy going to the shooting range and honing their skills. I have no fear that any of them are going to commit a crime with their guns.

I grew up on a farm. There were guns hung up on the rafters in the basement. At a certain age, we were tall enough to reach those guns. But we didn't view them as toys, and we knew not to play with them. Dad, a farmer, needed a gun. For one thing, sometimes the town folk would come out to the farm to hunt pheasant. Dad went along to make sure no one shot a cow by mistake or stupidity. He also occasionally had the unhappy job of needing to put down a suffering horse or cow.

So I'm OK with people owning guns. Responsible, mentally healthy people.

I think we do need a change in how easy it is for those suffering mental illness to acquire guns. The Washington shooting is just another sad example of tragic effects of gun accessibility for the mentally ill, and our sorry state of care for the mentally ill. I have the deepest sympathy for the families and friends of the victims, and also for the shooter's family. You see, I am both.

I speak of this from a very personal place. My own daughter, a lovely young bipolar woman, was able to go to a local store and buy a gun. Thanks to our restrictions here, she had to wait a day or two to buy ammunition. So she waited. And went back to the store to buy it. And went home and shot herself in her despair.

She was an adult, she was getting counseling, she should never have been allowed to buy a gun. But there was no way for the store to know that. There is no mechanism in place that could have protected her from herself. And so we as a family suffered the deepest kind of loss. Losing a family member is hard under any circumstances. Losing one to suicide brings with it it's own, unique burdens. I was very grateful for one thing: she didn't hurt anyone else. But she could have.

Every fall, the season of her death, brings with it a heavier sense of loss, of what we have missed out on not having her presence in our lives. She has missed so much - siblings getting married, having children. Every family gathering has a black hole, whether it is discussed or not just because she isn't here.

This is not to imply that we have not grieved well and properly and gone on with our lives. We have. But this kind of violent death changes you, changes your life in a permanent way, no matter how well it is dealt with.

And so, from my point of view, the big take home from mass murders and suicides in particular is that we as a society have very greatly let down the members of our society who suffer from mental illness, and this is true whether they commit a violent act or not. This is where the discussion and the wrangling to fix this problem needs to focus. I don't pretend to have any solutions but I know there's out there if we only have the will to face the facts and act.






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Weekend Work

We have had a productive day today.

- A lovely beach walk this morning

- A stop to pick up some plants for the deck




- A little light gardening (my tiny pineapple is starting to ripen)



- A drive to schedule a massage and pedi for next Saturday, and to pick up a few more frames for my Grandchildren photo wall and to get one of our son's gorgeous landscape photographs framed. It's for the landing.

- Time to sit on the deck, enjoy the breeze, and play on my iPad.

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Me Right Now

Just getting back to scrapping on my iPad using Art Studio after a busy spring. The best thing about iPad scrapping for me is the portability. Even though I have a laptop, it's always got external hard drives connected, and just isn't as easily portable as my beloved iPad.

This page was made using Anna Aspnes' This is Life kit (the sun is from Crazy Life)

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Birthday Cards

I have been thinking for some time that I should start making a few cards. I don't want to ever feel like it's something that I must do, but I have all these paper supplies, stamps, Sizzix, etc. on hand that I really don't use much anymore for paper scrapbooking since I'm doing almost exclusively digital for my scrapbooking. 

This seemed like a good month to start - two of my grandchildren have birthdays at the end of the month. Plus I had a pretty free day today, so why not now? 

One of the grandkids is a boy turning 13 (yikes!). He loves blue and green, but I have had this La Creme 8x8 pad around forever, so I decided to use it. I'm sure I'll learn a lot and get better at this with experience, but it'll do! The inside is just a handwritten note.

Below is the front & inside of my granddaughter's card. She's turning 9, and a current favorite is Hello Kitty. She also loves purple. The floral and chevron papers are Heidi Swapp, the purple is from a Basic Grey Plumeria paper pack. I inked the inside of the card using a stencil and I cut out the little tags and letters with my Sizzix. 

Other crafty projects on the list: my May Monthly pages, adding journaling to the metadata of some new photographs, cleaning up some of the mess in my craft room, and making another scrapbook page or two on  my iPad. 

Patti

Where did May go??

Wow, it's the end of May, and my last post was May 2nd. I have no idea where the month went!

It feels like I was just in Texas visiting two of my my adorable grandchildren, but that was April.

May has been:

Absolutely lovely in the garden. Lots of blossoms on the orchids and the roses. And the hibiscus. My little pineapple is growing.




A bit unsettling: I am officially pre-diabetic, but it's a bit confusing because I've been eating very few carbs for eight months, so why should my blood sugar be whacky? I am, granted, 20-30 pounds heavier than I would like to be - weight that just won't leave my body it seems, unless I'm just not eating anything. I do have autoimmune issues, so it's possible that I'm slowly developing adult onset autoimmune diabetes. Since diagnosis, I've checked fasting blood sugars, and they dropped by 20 points a few days later but are starting to inch up again. In spite of a careful diet. There is Type 1 Diabetes in the family, but not close relatives. Something to keep an eye on.

Musically rewarding: My students played a fantastic recital a few weeks ago, mostly their own compositions. I'm so very proud of them! I've also been occupying my time learning a new level of Simply Music pieces in preparation for my more advanced classes. Lots of good stuff there!

Saying goodbye: to students who are moving, stopping because senior year is going to be too crazy, or because of family health issues. It's always hard to say goodbye because I love them all! But like everything else in this world, it's all temporary, and I have to hold them lightly in my hand while they are with me.

Missing my Skype buddy: You know who you are! I was traveling in April then she was traveling in May. Can't wait until we are in the same time zone again!

Summer plans: I sign up for Ali Edward's Hello Story class at Big Picture Classes, which starts in July. I always love Ali's classes, and especially love story-focused scrapping. I haven't done a lot of pages since TWELVE finished in December. Hopefully this will give me the kick in the pants I need!

August includes a trip to see my other grand kids in Washington. Life is certainly more boring with all the grand kids gone! I have a feeling I'll be spending a lot more money on plane trips in upcoming years.

Walks at the beach: My summer schedule has space for me to spend more days walking at the beach in the morning. I plan on taking full advantage of that fact!

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What are we built to eat?

I just saw this video on what humans are designed to eat, by Dr. Barry Groves, a nutritional scientist from England. I found it very interesting. There is a few minutes of ad for the conference he was speaking at before his lecture.

Wise Traditions London 2010 - Barry Groves from Wise Traditions London on Vimeo.

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Productivity

Here's a link to a good article on productivity for creative people.

http://paidtoexist.com/counterintuitive-productivity/

As I have found repeatedly over time, to-do lists generally evolve into shackles for me. They start feeling oppressive and guilt-inducing. Even if they are full of relatively low levels tasks that could easily be done quickly or dispensed of without ill effect.

It does sometimes help me to view such a list as simply a reminder of things that could possibly get done that day. A list of options, not obligations. But I still have to be very careful about carrying too many undone items forward. My lists need to be short. Because I inevitably think I should be able to accomplish more in a day than I end up being able to.

Lists always seem to grow into immense, seemingly endless chores with no room for life and breathing and taking in the blessing of the moment.

This is one of the best sentences from the link, something to ask yourself as you start your day: What would I absolutely love to do and feel immensely proud of doing today?

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I can SEE!

This is one of my granddaughters. She has several rare disorders. One of them effects her vision. One of them effects her verbal abilities. Because she has been unable to tell the doctor how she is seeing, they have been unable to get a good prescription for her vision.

Last week, they finally could. She liked the lenses the doctor used to test her vision so much, she asked if she could keep them.

Her new glasses arrived today. She put them on, looked around amazed and said, "I can SEE!"

In fact, she liked them so much, she didn't even take them off in the bright sun, which normally bothers her eyes a lot. They do have prescription sunglasses on order for her, but they aren't in yet.

She sat in the chair to watch TV instead of standing right in front of it.

I have to admit, it breaks my heart that she has had to live almost nine years of her life without vision assistance, but she is now old enough and appreciates what her glasses do for her, she will at least wear them.

Yes, I made a scrapbook page about it today.

Patti

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