For what may be the first time I can think of, I averted an Addisonian crisis!
This happened a couple days ago and between being wiped out from that and having family in town for the holidays, I haven't had time to post. But I wanted to be sure to record what happened, in case it can help me or you in the future.
If you read this blog regularly, you know I have been trying to slowly wean back the mega dose of Prednisone I was on. I started on 25mg in early November and was down to 7.5mg the week of Christmas. The day after Christmas, I only took 5mg. By the next morning, I was a shaking, sweaty wreck.
I woke up around 7am and fed the kittens, like I do every day, but I forgot to take my Prednisone. I know, so not ok. I was just so tired and I kept falling back asleep. I finally remembered I needed to take my meds at 10am so I had gone a good 20 hours without any steroid.
My body got PISSED off.
I started to feel the familiar signs. Severe nausea and feeling like I need to vomit. Shaking and heart racing. Followed by heart slowing.
I checked my blood pressure and heart rate twice during this episode. My heart rate went from 48 bpm to 110 bpm in the space of about 60 seconds. I have no idea what that means, I would think it was wrong but the bp reading came out the same, so I don't know.
I knew I needed to stay hydrated, get some food in me, and probably take more steroids than the 5mg I had managed to down around 10am. I called my oh so awesome dr, who totally calmed me down. I was in tears at that point, I was so sure I was going into crisis and I didn't want to spend the last few days of my family in town in the hospital.
My doctor advised me to take another 5mg since I hadn't thrown up yet, and then take another 5mg in an hour. My sister made me some scrambled eggs and I downed about a liter of Kangen water.
And for the first time since I don't know when, instead of falling down the scary cycle of nausea, throwing up, then hospital, I actually started to feel better! I stayed in bed and watched movies with my sister most of the day, but by yesterday I was actually feeling pretty good. I kept taking 15mg/day which was my dr's recommendation. I think I will stay on 15mg through the holidays and then start cutting back by 2.5mg a week again.
The goal is to stabilize around 7.5mg or 5mg of Prednisone so I can switch to the equivalent dose of Hydro Cortisone. It has been a long, slow process but I'm determined not to give up.
I can't stand the side effects of Prednisone or Dexamethasone and HC feels like my only hope!
PS: If you pray or believe in positive thoughts, please send some love to my friend Heather, Baby Gavin's mom, whom I have posted about before. She has a very important blood test tomorrow that could affect the course of her life. Please keep her in your thoughts. Baby Gavin passed away 11 months ago today. We were able to perform a Random Act of Kindness in his memory on his 11-month birthday, December 26th. I will post pics from that day soon. It was incredible.
Tuesday, December 29, 2015
Saturday, December 26, 2015
I Survived, How About You?
Well, we made it.
Christmas 2015 is officially over and hopefully it didn't throw you into an Addisonian crisis.
My health has stayed pretty steady, considering the late nights and so much social interaction. I'm an introvert who masquerades as a an extrovert, and it can get exhausting!
This was one of the better Christmases for me. I was surrounded by family and friends and that was the best gift for sure. I was also reminded of how difficult the holiday is for so many people and I think that helped me be extra appreciative for the joyfulness of this year. I love giving gifts and, not to brag, but I'm pretty great at it. I stayed up until 2am on Christmas Eve wrapping gifts and was up again at 6:30am to finish everything. Amazingly enough, I felt pretty good and made it through the day without a nap. A true Christmas miracle!
I'm sticking to 7.5mg of prednisone until I run out of the stock of pills I bought (although I took 10mg yesterday to make up for the lack of sleep). Then I will switch to HC. My energy is ok and while I do feel fatigued, it is manageable. I've gotten better about saying that I need to call it a night too. I used to always feel like I had to be the last one to leave a party. Not anymore.
My sweet sister brought me a bunch of new vitamins so I will be adding those to my regimen and posting about the effects in the coming weeks. Hopefully, more energy and better overall health! I'm also drinking lots of kangen water and will post about that soon.
I'm starting to see a reduction in the swelling and other steroid side effects. My ankles look less like sausages and the fat around my face seems to be shrinking. It may be wishful thinking but I'm hoping this is the start of many positive changes to come.
So stay tuned!
Love,
an Addison alien
Christmas 2015 is officially over and hopefully it didn't throw you into an Addisonian crisis.
My health has stayed pretty steady, considering the late nights and so much social interaction. I'm an introvert who masquerades as a an extrovert, and it can get exhausting!
This was one of the better Christmases for me. I was surrounded by family and friends and that was the best gift for sure. I was also reminded of how difficult the holiday is for so many people and I think that helped me be extra appreciative for the joyfulness of this year. I love giving gifts and, not to brag, but I'm pretty great at it. I stayed up until 2am on Christmas Eve wrapping gifts and was up again at 6:30am to finish everything. Amazingly enough, I felt pretty good and made it through the day without a nap. A true Christmas miracle!
I'm sticking to 7.5mg of prednisone until I run out of the stock of pills I bought (although I took 10mg yesterday to make up for the lack of sleep). Then I will switch to HC. My energy is ok and while I do feel fatigued, it is manageable. I've gotten better about saying that I need to call it a night too. I used to always feel like I had to be the last one to leave a party. Not anymore.
My sweet sister brought me a bunch of new vitamins so I will be adding those to my regimen and posting about the effects in the coming weeks. Hopefully, more energy and better overall health! I'm also drinking lots of kangen water and will post about that soon.
I'm starting to see a reduction in the swelling and other steroid side effects. My ankles look less like sausages and the fat around my face seems to be shrinking. It may be wishful thinking but I'm hoping this is the start of many positive changes to come.
So stay tuned!
Love,
an Addison alien
Sunday, December 20, 2015
Sweet Sleep
I got a good night's sleep (which for me means only waking up a few times) and feel like I have some spoons today. Last night, I only took half the amount of adipesque I normally do so I do think cutting back on that will help me feel more energetic during the day.
The kittens slept super well and did not have any accidents overnight! They're basically litter box trained at two weeks old. Clearly they are genius kittens sent to take over the world. Or at the very least, to take over my bed, where they are currently cuddled up and napping. The dogs went back to sleep too, so I guess that's my cue. Early morning nap for me :)
After all, I must stock up on spoons since my sister arrives today!!! I am so excited to squeeze her and spoil her this Christmas!!!
Love,
an Addison alien
The kittens slept super well and did not have any accidents overnight! They're basically litter box trained at two weeks old. Clearly they are genius kittens sent to take over the world. Or at the very least, to take over my bed, where they are currently cuddled up and napping. The dogs went back to sleep too, so I guess that's my cue. Early morning nap for me :)
After all, I must stock up on spoons since my sister arrives today!!! I am so excited to squeeze her and spoil her this Christmas!!!
Love,
an Addison alien
Saturday, December 19, 2015
I'm out of spoons
If you haven't read "The Spoon Theory" yet, look under Downloads on the right of your screen and read it now. It is a great resource to share with family and friends for them to understand your chronic, invisible illness.
I'm not sure if it is the steroid reduction or just a busy holiday season, but I am all out of spoons. I wasn't going to post today because I honestly don't have much to say or the energy to attempt to be clever. However, since the whole point of this blog is to track my journey as I reduce and change medications, as well as try various alternative treatments, I decided to should do a post about just how tired I am. Hopefully, some day soon I can look at this post and think how awesome it is that I have so much more energy!
As I've put in earlier posts, I'm trying to reduce the amount of steroids I am on from 25mg per day to 7.5mg. I've made the final reduction - so just 7.5mg per day - and I am exhausted. Again. I'm hoping it only takes a couple days for my body to balance out and my energy to come back...it is Christmas, after all! I have family in town and really look forward to spending time with them.
I am also on a fairly high dose of adepesque in the evenings. I think I needed such a high dose in the past because I was taking so much cortisol. I needed something to knock me out! Now I feel like I need to start cutting back on the adepesque and maybe that will help me feel less tired during the day. My doctor has warned me that it can make you feel "hungover" the next day if the dose is too high. Maybe that's all it is.
I have learned through this journey with chronic illness how important it is to be kind to my body and to myself. So I called in the housekeeper and she is currently taking care of cleaning my place. Friends have walked my dogs and helped with the kittens. I'll probably order in dinner.
Now, MOM, before you start blaming the kittens for me being tired, they really are not to blame. They are sleeping long stretches at night - 8 hours or more - I just can't seem to get enough sleep! I could sleep all day and still be tired.
And yes, I feel like some kind of Hollywood socialite having my apartment cleaned for me, my laundry done, my food prepared...but if that's what my body needs today, I've learned to go with it.
For the record, I have done at least a load of laundry every day this week, but today. I'm not completely incapable of helping myself.
So I guess that's the moral of my story today. Be kind to others. Be kind to yourself. Hire a maid.
Happy holidays! May you have many spoons!
Love,
an Addison alien
I'm not sure if it is the steroid reduction or just a busy holiday season, but I am all out of spoons. I wasn't going to post today because I honestly don't have much to say or the energy to attempt to be clever. However, since the whole point of this blog is to track my journey as I reduce and change medications, as well as try various alternative treatments, I decided to should do a post about just how tired I am. Hopefully, some day soon I can look at this post and think how awesome it is that I have so much more energy!
As I've put in earlier posts, I'm trying to reduce the amount of steroids I am on from 25mg per day to 7.5mg. I've made the final reduction - so just 7.5mg per day - and I am exhausted. Again. I'm hoping it only takes a couple days for my body to balance out and my energy to come back...it is Christmas, after all! I have family in town and really look forward to spending time with them.
I am also on a fairly high dose of adepesque in the evenings. I think I needed such a high dose in the past because I was taking so much cortisol. I needed something to knock me out! Now I feel like I need to start cutting back on the adepesque and maybe that will help me feel less tired during the day. My doctor has warned me that it can make you feel "hungover" the next day if the dose is too high. Maybe that's all it is.
I have learned through this journey with chronic illness how important it is to be kind to my body and to myself. So I called in the housekeeper and she is currently taking care of cleaning my place. Friends have walked my dogs and helped with the kittens. I'll probably order in dinner.
Now, MOM, before you start blaming the kittens for me being tired, they really are not to blame. They are sleeping long stretches at night - 8 hours or more - I just can't seem to get enough sleep! I could sleep all day and still be tired.
And yes, I feel like some kind of Hollywood socialite having my apartment cleaned for me, my laundry done, my food prepared...but if that's what my body needs today, I've learned to go with it.
For the record, I have done at least a load of laundry every day this week, but today. I'm not completely incapable of helping myself.
So I guess that's the moral of my story today. Be kind to others. Be kind to yourself. Hire a maid.
Happy holidays! May you have many spoons!
Love,
an Addison alien
Thursday, December 17, 2015
Wednesday, December 16, 2015
Grief & Getting Through The Holidays
The holidays aren't a happy time for everyone. If you have Addison's Disease, you already know this. Stress in the form of places to be and gifts to get and family members arguing and meals to be made can all add up to a major need for additional medication. Pre-diagnosis, I would usually end up sick after a big holiday. Now I know why: my body literally could not handle the stress.
With the proper medications, I can handle the holidays so much better than in the past.
But what if there wasn't a pill that could help?
For too many families, there is nothing this side of heaven that will make them "feel better". I can't help but think of them this time of year.
A childhood friend of mine has had, what I consider, the year from hell. It started off wonderfully, with the birth of her first child in January, a beautiful boy named Gavin.
He unexpectedly died of a stroke at just 3 days old.
Several months later, she became pregnant again. She was scared, as anyone would be, so was enormously relieved to hear that baby's heartbeat.
She miscarried just a short while later.
As if that wasn't enough, cells left over from her miscarriage somehow turned into cancerous tumors and she is now undergoing chemotherapy and all its terrible side effects.
At this time last year, she was celebrating and happily anticipating the birth of her first child.
Now, she is mourning the loss of her babies, of her health, of the memories they should be making celebrating Gavin's first Christmas. Instead of stressing over what gifts to give, she is worrying about what type of chemo gives her the best chance at being able to get pregnant again someday.
I don't write this so you can feel sorry for her. The last thing she wants is pity.
I write this to put our health troubles in perspective. It's easy to get caught up in just how "unlucky" we are. I mean, we have a rare disease that takes years to diagnose (during which time you are told repeatedly that you are insane), little is known about, and many medical professionals don't know how to handle.
But there is medicine that allows us to live. With proper treatment, Addison's Disease is not progressive nor terminal.
Do you know how happy my friend would be to have her baby, regardless if he had a major medical concern like Addison's Disease? Do you know how happy she would be to have Addison's Disease, if it meant she could have her son back? I bet she would not complain once about having to take medications every day or side effects or weight gain or anything.
I fail every single day at carrying this perspective with me. I wish I had her view on life and her understanding of true priorities.
Instead, I catch myself crying because I had to go to three different pharmacies to fill my prescription.
I think we are lucky when we can learn from others and from her I learn so much. She has told me that she doesn't want to be that family that people hear about and think "Thank God we're not them". I understand where she is coming from, it goes back to not needing anyone's pity. I can't help but feel sorry that so many horrible things have happened to her. But mostly, I admire her.
I honestly marvel at the fact that she manages to get out of bed every day. In similar circumstances, I don't think I could. So yes, when I am feeling like crap, sometimes I do think to myself - Hey, if Heather can get out of bed, you can too.
Not because I pity her, but because she inspires me to not be such a wimp. She reminds me of what is really important in life, of how truly blessed I am, and why I should value every moment.
We were texting earlier today and I said how much the scarcity of a certain something pissed me off. She said it made her more grateful and appreciate of the ones there were. Yeah, that's her response while in the midst of the year from hell. She's incredible and doesn't even know it.
That's the thing about grief. It's a very lonely place. And it can feel even lonelier this time of year. One in four women experience either the death of an infant or a miscarriage...and I'm going to go ahead and guess you know more than four women.
If not, you should probably get off the internet now.
If you are grieving this holiday season (it doesn't have to be a person, you may be newly diagnosed and grieving the life you thought you would lead), I hope you will reach out for help wherever you can find it. Do what you need to do to get through the holidays and don't let anyone judge you. Join celebrations when you can but know you are the only one who can decide how much you can take.
If this is a joyful season in your life, I hope you'll remember those struggling and consider doing something kind for someone in need. Please remember those missing loved ones and show them kindness if you can.
I also hope you will smile wider and laugh louder, knowing your happiness, as all joy, should be celebrated.
Because you never know what the next holiday will bring.
You can read more about Heather, Gavin, and the rest of her family on her blog or on Baby Gavin's Random Act of Kindness Facebook page.
Love,
an Addison alien
With the proper medications, I can handle the holidays so much better than in the past.
But what if there wasn't a pill that could help?
For too many families, there is nothing this side of heaven that will make them "feel better". I can't help but think of them this time of year.
A childhood friend of mine has had, what I consider, the year from hell. It started off wonderfully, with the birth of her first child in January, a beautiful boy named Gavin.
He unexpectedly died of a stroke at just 3 days old.
Several months later, she became pregnant again. She was scared, as anyone would be, so was enormously relieved to hear that baby's heartbeat.
She miscarried just a short while later.
As if that wasn't enough, cells left over from her miscarriage somehow turned into cancerous tumors and she is now undergoing chemotherapy and all its terrible side effects.
At this time last year, she was celebrating and happily anticipating the birth of her first child.
Now, she is mourning the loss of her babies, of her health, of the memories they should be making celebrating Gavin's first Christmas. Instead of stressing over what gifts to give, she is worrying about what type of chemo gives her the best chance at being able to get pregnant again someday.
I don't write this so you can feel sorry for her. The last thing she wants is pity.
I write this to put our health troubles in perspective. It's easy to get caught up in just how "unlucky" we are. I mean, we have a rare disease that takes years to diagnose (during which time you are told repeatedly that you are insane), little is known about, and many medical professionals don't know how to handle.
But there is medicine that allows us to live. With proper treatment, Addison's Disease is not progressive nor terminal.
Do you know how happy my friend would be to have her baby, regardless if he had a major medical concern like Addison's Disease? Do you know how happy she would be to have Addison's Disease, if it meant she could have her son back? I bet she would not complain once about having to take medications every day or side effects or weight gain or anything.
I fail every single day at carrying this perspective with me. I wish I had her view on life and her understanding of true priorities.
Instead, I catch myself crying because I had to go to three different pharmacies to fill my prescription.
I think we are lucky when we can learn from others and from her I learn so much. She has told me that she doesn't want to be that family that people hear about and think "Thank God we're not them". I understand where she is coming from, it goes back to not needing anyone's pity. I can't help but feel sorry that so many horrible things have happened to her. But mostly, I admire her.
I honestly marvel at the fact that she manages to get out of bed every day. In similar circumstances, I don't think I could. So yes, when I am feeling like crap, sometimes I do think to myself - Hey, if Heather can get out of bed, you can too.
Not because I pity her, but because she inspires me to not be such a wimp. She reminds me of what is really important in life, of how truly blessed I am, and why I should value every moment.
We were texting earlier today and I said how much the scarcity of a certain something pissed me off. She said it made her more grateful and appreciate of the ones there were. Yeah, that's her response while in the midst of the year from hell. She's incredible and doesn't even know it.
That's the thing about grief. It's a very lonely place. And it can feel even lonelier this time of year. One in four women experience either the death of an infant or a miscarriage...and I'm going to go ahead and guess you know more than four women.
If not, you should probably get off the internet now.
If you are grieving this holiday season (it doesn't have to be a person, you may be newly diagnosed and grieving the life you thought you would lead), I hope you will reach out for help wherever you can find it. Do what you need to do to get through the holidays and don't let anyone judge you. Join celebrations when you can but know you are the only one who can decide how much you can take.
If this is a joyful season in your life, I hope you'll remember those struggling and consider doing something kind for someone in need. Please remember those missing loved ones and show them kindness if you can.
I also hope you will smile wider and laugh louder, knowing your happiness, as all joy, should be celebrated.
Because you never know what the next holiday will bring.
You can read more about Heather, Gavin, and the rest of her family on her blog or on Baby Gavin's Random Act of Kindness Facebook page.
Love,
an Addison alien
Tuesday, December 15, 2015
10 Reasons Why Steroids Don't Suck
This time of year, the internet is chock full of Top 10 Lists: the best of the year in music, TV, movies, viral videos, and more. While it would be much easier to write a Top 10 List of reasons why having Addison's Disease and Hashimoto's Disease sucks, I am challenging myself to think of 10 Reasons Steroids Why Don't Suck.
I read a book this year called "The Magic". It's all about different ways to integrate gratitude into your daily life. It's a great book and I can't recommend it highly enough. It is meant to be read a chapter a day, giving you a new way each day to practice gratitude.
One of the days, the writer asks the reader to think of a relationship they struggle with and then write down 10 reasons to be grateful for said relationship. The idea behind this being that if you focus on a person's positives, you might forget all the ways they are driving you bat-shit crazy. I tried it and it worked pretty well for me. I still have people in my life that drive me nuts, but hey, that's what family is for.
I crankily got out of bed today and considered writing a long post about how much steroids suck and how tired I am and how my upper chest and neck have broken out in hives for the millionth time this year. I'm down to 5mg of Prednisone in the morning and 2.5 in the afternoon today. It's my first day on such a low dose and I would have given good money to stay in bed all day. I am just exhausted. I know my body just needs time to adjust from the super dose of 25mg I was on. But it still sucks. I have a to-do list a mile long, family starts arriving tomorrow for Christmas, and I just want to crawl in bed and hide. Oh, and did I mention I am also bottle-feeding two orphaned kittens?
OK, this is starting to sound like that long, complaining post I promised not to write.
As a practice of gratitude, and with the hopes of changing my stinky attitude towards these medications, here are 10 Reasons Why Steroids Don't Suck:
10. FAKE DRAMATIC STORIES: "oh, those are claw marks from when I was attacked by a bear. I don't mean to brag, but I won that fight" sounds so much cooler than "those are giant, angry, red, stretch marks caused by steroids". Also works for the excessive bruises you accumulate from things like people hugging you too hard or a feather falling from the sky and grazing your arm.
9. NO WRINKLES because when you get "moon face" and grow a double chin from the swelling steroids cause, it's pretty much impossible to have wrinkles on your face too. I'm almost 33 and I am totally wrinkle free.
8. BUILT-IN TRAVEL PILLOW in the form of the "buffalo hump", aka the extra fat deposit between your back shoulders.
7. BIG(GER) BOOBS. Enough said. Sorry, men on steroids. You're welcome, men in general.
6. Along the same lines, EXTRA PADDING when you sit on on uncomfortable chairs or couches. Steroids provide an extra layer of cushion between your bones and the seat.
5. IGNORING ANNOYING PEOPLE is a lot easier when you gain 50 lbs and they aren't sure if it's you or not. Just make eye contact, show no sign of recognition, and keep walking. 9 times out of 10, they'll assume it wasn't you.
4. GREAT WARDROBE from your weight changing so often. When a friend of any size needs to borrow something, you have them covered (pun intended...and pretty lame).
3. POP CULTURE CONNOISSEUR because lots and lots of time to read and watch everything as you are hospitalized, put on bed rest, call in sick to work, or feel too fatigued to get out of bed, at least once a month.
2. You quickly learn who your REAL FRIENDS are. The ones who understand when you have to cancel at the last minute and don't make you feel even worse. The ones who aren't shocked when you are "sick again" (note: chronic illness means I am always sick. Duh.), the ones who call even though you were too tired to text them back, the ones who will drive you to the ER in the middle of the night to save you yet another ambulance bill. Sure, it sucks when people you thought were forever friends turn out to only like you on your "good days". But you are better off without them in your life. And the people who step up, or step into your life, more than make up for ones you lose.
1. Of course, the number 1 reason steroids don't suck and the reason we all take them every day: STEROIDS KEEP ADDISONIANS ALIVE. That's a pretty awesome thing. Modern medicine allows me to live. And for that, I could not be more grateful.
Thanks, steroids. I wouldn't be here without you.
Still, it took all day to think of 10 nice things to say about you.
Love,
an Addison alien
I read a book this year called "The Magic". It's all about different ways to integrate gratitude into your daily life. It's a great book and I can't recommend it highly enough. It is meant to be read a chapter a day, giving you a new way each day to practice gratitude.
One of the days, the writer asks the reader to think of a relationship they struggle with and then write down 10 reasons to be grateful for said relationship. The idea behind this being that if you focus on a person's positives, you might forget all the ways they are driving you bat-shit crazy. I tried it and it worked pretty well for me. I still have people in my life that drive me nuts, but hey, that's what family is for.
I crankily got out of bed today and considered writing a long post about how much steroids suck and how tired I am and how my upper chest and neck have broken out in hives for the millionth time this year. I'm down to 5mg of Prednisone in the morning and 2.5 in the afternoon today. It's my first day on such a low dose and I would have given good money to stay in bed all day. I am just exhausted. I know my body just needs time to adjust from the super dose of 25mg I was on. But it still sucks. I have a to-do list a mile long, family starts arriving tomorrow for Christmas, and I just want to crawl in bed and hide. Oh, and did I mention I am also bottle-feeding two orphaned kittens?
OK, this is starting to sound like that long, complaining post I promised not to write.
As a practice of gratitude, and with the hopes of changing my stinky attitude towards these medications, here are 10 Reasons Why Steroids Don't Suck:
10. FAKE DRAMATIC STORIES: "oh, those are claw marks from when I was attacked by a bear. I don't mean to brag, but I won that fight" sounds so much cooler than "those are giant, angry, red, stretch marks caused by steroids". Also works for the excessive bruises you accumulate from things like people hugging you too hard or a feather falling from the sky and grazing your arm.
9. NO WRINKLES because when you get "moon face" and grow a double chin from the swelling steroids cause, it's pretty much impossible to have wrinkles on your face too. I'm almost 33 and I am totally wrinkle free.
8. BUILT-IN TRAVEL PILLOW in the form of the "buffalo hump", aka the extra fat deposit between your back shoulders.
7. BIG(GER) BOOBS. Enough said. Sorry, men on steroids. You're welcome, men in general.
6. Along the same lines, EXTRA PADDING when you sit on on uncomfortable chairs or couches. Steroids provide an extra layer of cushion between your bones and the seat.
5. IGNORING ANNOYING PEOPLE is a lot easier when you gain 50 lbs and they aren't sure if it's you or not. Just make eye contact, show no sign of recognition, and keep walking. 9 times out of 10, they'll assume it wasn't you.
4. GREAT WARDROBE from your weight changing so often. When a friend of any size needs to borrow something, you have them covered (pun intended...and pretty lame).
3. POP CULTURE CONNOISSEUR because lots and lots of time to read and watch everything as you are hospitalized, put on bed rest, call in sick to work, or feel too fatigued to get out of bed, at least once a month.
2. You quickly learn who your REAL FRIENDS are. The ones who understand when you have to cancel at the last minute and don't make you feel even worse. The ones who aren't shocked when you are "sick again" (note: chronic illness means I am always sick. Duh.), the ones who call even though you were too tired to text them back, the ones who will drive you to the ER in the middle of the night to save you yet another ambulance bill. Sure, it sucks when people you thought were forever friends turn out to only like you on your "good days". But you are better off without them in your life. And the people who step up, or step into your life, more than make up for ones you lose.
1. Of course, the number 1 reason steroids don't suck and the reason we all take them every day: STEROIDS KEEP ADDISONIANS ALIVE. That's a pretty awesome thing. Modern medicine allows me to live. And for that, I could not be more grateful.
Thanks, steroids. I wouldn't be here without you.
Still, it took all day to think of 10 nice things to say about you.
Love,
an Addison alien
Sunday, December 13, 2015
Vitamin "P"
Dr. Mark Hyman wrote an article about Vitamin "P" or the positive affect pets can have on a person's health.
Of course, when you have Addison's or other chronic illnesses, you have to balance the benefits of having a pet with all the work they require. Even when the work is done joyfully, it is still another thing to do. Some days, I just can't get out of bed.
But something about helpless kittens and puppies actually energizes me. I love caring for others. For whatever weird reason, that makes me happy. So even though I am sleeping a bit less than normal, doing an extra load of laundry every day, and bottle-feeding these little guys every few hours, I feel great! I was awake before they were this morning!
I even made them outfits, as you can see. And look! They think my puffy steroid cheeks are nice, soft pillows. Finally, a positive to puffy cheeks!
Tomorrow I start my last step of the weaning process of Prednisone. My schedule is pretty packed so I'm praying my energy levels stay steady. Thankfully, the kittens are already sleeping through the night.
I think they look a little like aliens too, especially in this picture! Take me to your leader!
Love,
An Addison alien
Saturday, December 12, 2015
The Kittens Are Coming!
It is cold and rainy outside and actually feels a bit like fall. Or winter. Whichever season it's supposed to be. Generally, we have two seasons: rainy and dry. The blustery weather gave me a chance to pull on a pair of knee-high boots that haven't zipped since I started on steroids and the wonderful swelling began.
Guess what?!?!?
They ZIPPED UP!!! All the way!
I tried to wear these boots just a few weeks ago and I couldn't get them to zip over tights. Today, they zipped over thermal leggings. It appears the steroid swelling is starting to go down! I am thrilled but not terribly surprised, since I have cut my Prednisone back from 25mg/day to 10mg/day. Just one more reduction to go and then I think I will switch to HC, since that is what so many others feel best on.
Oh, what's that? You don't care about my boots and just want to hear about the kittens? Ok, fine.
A friend of mine fosters animals since there is such a pet over-population problem where I live in Mexico. The shelters are always full and there are always animals in need. He generally has about 20 animals in his home! He is incredible. And deserves a vacation. So he is heading to the beach for a few days and asked me to take care of two tiny kittens he recently rescued. I jumped at the chance (hello ticking ovaries)!
The kittens were burned in a fire that killed the rest of their litter mates and their mama. They are only about a week old, eyes just opened and bright blue. They were singed a bit but their mama managed to get them out of the fire. My friend came across them about that time and waited and watched for the mother cat to return for the two babies but when she did not, and he could not find her, he had to assume that she died in the fire. So he scooped them up and took them home, as he does with every animal he sees in need.
We are enjoying bottle-feeding them and marveling at how tiny they are. Their heads are no bigger than a ping pong ball. If they ever stop squirming, I'll try to get more pictures.
They both need names. Let me know if you have any ideas.
In the meanwhile, we are calling them the white one, and the black one, which honestly sounds a bit racist and I'd like to stop calling them that as soon as possible.
Love,
an Addison alien
Friday, December 11, 2015
Alien in Need
Hey y'all
This blog has connected me with a fellow Addison alien who is really struggling to stay out of crisis. Many of you have been in similar situations; years of test after test but no helpful results. Getting worse and worse after you thought you'd already hit rock bottom. I know I have.
A couple of times.
Thankfully, I always had friends and family to help me get through. And this lady does too. So much so, one of her friends has started a Go Fund Me page. They did not ask my to, but I wanted to share her story here. Maybe someone reading this will be able to figure out what's wrong.
Clearly, we can't leave it to the doctors. I read somewhere it takes an average of 5 to 7 YEARS to get diagnosed with Addison's. It took me 10, and I figured it out, not a doctor.
Don't wait on doctors!
Here's her story, from the GoFundMe page:
Hello, and thank you for stopping by! My name is Shaunna and I am going to raise $5,000 to get my dear friend, Leela, to the Mayo Clinic in Rochester, Minnesota (without losing her house or filing for bankruptcy).
Leela is an amazing mother and wife. She is a kind and wonderful peron with so much to offer the world and its inhabitants. Landon and Reagan (8&6) are her terrific kids and they try so hard to help mommy get well- but it's time to ask for help beyond what their smiles and support provide.
Here's the short version of a long and complex story-
Leela communicated to her doctor that she didn't feel right and had a number of "odd" complaints over the course of two and half years- ALL were misdiagnosed and in turn, grew in severity. Unfortunately, Leela has been diagnosed with some very rare and life-threatening illnesses and the doctors are still unclear as to a complete diagnosis. Here's what we know so far.
She has Cushing's Syndrome coupled with Addison's Disease . Either of these diseases are serious enough alone- but she has both and is recovering (not so smoothly) from her brain tumor extraction, caused by the Cushing's, nearly seven months ago. The road to recovery after any brain surgery is sure to be extensive- but with Addison's Disease, the recovery is brutal. Without being too technical; Leela is suffering an Addisonian crisis (a deadly drop in hormone levels causing her entire body to become painful, then numb and start to shut down and convulse) every few days because her medical care team cannot pinpoint the problem and/or find an accurate balance of her hormone replacement therapies,
Leela's doctors, here in Kansas City, haven't the experience needed to get her healthy again. I actually witnessed one doctor say, "Well, Leela, you are quite the mystery!" As you can imagine, this isn't comforting as you lay convulsing and exhausted on an uncomfortable hospital bed. Now, that's not to say she has uneducated doctors, that is in fact, not the case!! However, the scarsity in Addison's Disease leaves quite a gap in education versus actual experience.
Please help me- help her get the help she desperately needs!!!!
Any money raised will be used in one of two ways; directly to hospitals and doctors for payment of services rendered OR travel expenses associated with the Mayo Clinic.
Please let me take this opportunity to thank each of you for reading this campaign and all donations are so VERY MUCH APPRECIATED!!!!
You can read more about Leela here.
And in case you are thinking, huh well that was pretty lazy of her, just copy and paste someone else's writing...firstly, you are right. Secondly, I have a very good excuse for basically letting someone else write my blog for tonight. I'll post pics soon.
In the meanwhile, say a prayer for Leela, think a good thought, light a candle, or dedicate your yoga practice to her - whatever works for you.
Leela, take heart. You have an army of Addison's aliens behind you.
This blog has connected me with a fellow Addison alien who is really struggling to stay out of crisis. Many of you have been in similar situations; years of test after test but no helpful results. Getting worse and worse after you thought you'd already hit rock bottom. I know I have.
A couple of times.
Thankfully, I always had friends and family to help me get through. And this lady does too. So much so, one of her friends has started a Go Fund Me page. They did not ask my to, but I wanted to share her story here. Maybe someone reading this will be able to figure out what's wrong.
Clearly, we can't leave it to the doctors. I read somewhere it takes an average of 5 to 7 YEARS to get diagnosed with Addison's. It took me 10, and I figured it out, not a doctor.
Don't wait on doctors!
Here's her story, from the GoFundMe page:
Hello, and thank you for stopping by! My name is Shaunna and I am going to raise $5,000 to get my dear friend, Leela, to the Mayo Clinic in Rochester, Minnesota (without losing her house or filing for bankruptcy).
Leela is an amazing mother and wife. She is a kind and wonderful peron with so much to offer the world and its inhabitants. Landon and Reagan (8&6) are her terrific kids and they try so hard to help mommy get well- but it's time to ask for help beyond what their smiles and support provide.
Here's the short version of a long and complex story-
Leela communicated to her doctor that she didn't feel right and had a number of "odd" complaints over the course of two and half years- ALL were misdiagnosed and in turn, grew in severity. Unfortunately, Leela has been diagnosed with some very rare and life-threatening illnesses and the doctors are still unclear as to a complete diagnosis. Here's what we know so far.
She has Cushing's Syndrome coupled with Addison's Disease . Either of these diseases are serious enough alone- but she has both and is recovering (not so smoothly) from her brain tumor extraction, caused by the Cushing's, nearly seven months ago. The road to recovery after any brain surgery is sure to be extensive- but with Addison's Disease, the recovery is brutal. Without being too technical; Leela is suffering an Addisonian crisis (a deadly drop in hormone levels causing her entire body to become painful, then numb and start to shut down and convulse) every few days because her medical care team cannot pinpoint the problem and/or find an accurate balance of her hormone replacement therapies,
Leela's doctors, here in Kansas City, haven't the experience needed to get her healthy again. I actually witnessed one doctor say, "Well, Leela, you are quite the mystery!" As you can imagine, this isn't comforting as you lay convulsing and exhausted on an uncomfortable hospital bed. Now, that's not to say she has uneducated doctors, that is in fact, not the case!! However, the scarsity in Addison's Disease leaves quite a gap in education versus actual experience.
Please help me- help her get the help she desperately needs!!!!
Any money raised will be used in one of two ways; directly to hospitals and doctors for payment of services rendered OR travel expenses associated with the Mayo Clinic.
Please let me take this opportunity to thank each of you for reading this campaign and all donations are so VERY MUCH APPRECIATED!!!!
You can read more about Leela here.
And in case you are thinking, huh well that was pretty lazy of her, just copy and paste someone else's writing...firstly, you are right. Secondly, I have a very good excuse for basically letting someone else write my blog for tonight. I'll post pics soon.
In the meanwhile, say a prayer for Leela, think a good thought, light a candle, or dedicate your yoga practice to her - whatever works for you.
Leela, take heart. You have an army of Addison's aliens behind you.
Good Morning
Since I promised to record all the treatments I am trying, I had to add this. I am taking a tablespoon of coconut oil every day, with a drop of oregano essential oil.
Supposedly, eating coconut oil will actually help you lose weight, help your hair grow, and give you healthier looking skin. I'll let you know if any of that happens.
I think it will for sure affect my hair. I foster puppies and I always add coconut oil to their food to get the coats nice and shiny. Not sure why I never thought of doing it for myself.
The oregano is for a cough I've had off and on for the last couple of weeks. I also have not been putting Thieves blend essential oils on my feet every night like I usually do. Shame on me!
If you think you want to try this at home, there are two things you must know. I only use Young Living essential oils because they are 100% pure so you can ingest them. Other essential oils are cut with chemicals you do not want to be swallowing. And unrefined, virgin coconut oil is the best.
I used to catch every cold I came near but since I started using essential oils, I haven't been truly sick once. I might get a headache or a bit of a cough or sore throat, but it never turns into a full blown head cold. And it almost always happens when I forget to use my oils for a few days. I'm usually better as soon as I start using my oils again. It's pretty awesome.
Granted, my quitting smoking coincided with my starting essential oils, so I guess it's probably the combo of both that should get the credit.
If you want to quit smoking, I highly recommend the book "The Easy Way to Quit Smoking" by Allen Carr. Also hypnotherapy. And prayer.
Lots and lots of prayer.
Love,
an Addison alien
Thursday, December 10, 2015
Screw You, Antarctica
 |
| It should say "You know you have Addison's when..." |
Today was the first day I took less than 10mg of Prednisone in the morning. I slept really weirdly, I think in part because I am taking so much Prednisone, and then taking less medicine today...I am wiped out and it's only 5pm. It makes no sense, I know. I'm a little dizzy and light-headed too so bear with me.
Even though, overall, I am on too high a dose of steroids, my body has gotten used to that high dose and you can't just cut it back suddenly without sending yourself into crisis. Trust me, I've done it (inadvertently, but still). Even with weaning the Prednisone down, I am feeling side effects. But I am looking forward to seeing what happens to my body when I am on a "normal" dose.
Luckily, I am able to crawl into bed and write/whine to y'all about it.
I say y'all, not because I am from the South, but because I find it charming and whimsical and it takes two less key strokes to type out.
So there's your update on how the medication switchication is coming.
In other news, I now need one of those jelly laptop cushion things because typing.
Also, there are almost 1,000 Addison Aliens reading this blog, on every continent!
Ok, fine.
Not EVERY continent. Antarctica hasn't logged on yet. I'm really bummed because I've always really love penguins. Not anymore.
Antarctica, you're officially on my shit list.
I think I need a nap.
Let's Talk About Drugs
Sorry, not the fun kind.
Here's what I am on, what I used to be on, and what I am trying to transition toward.
You should probably know that in addition to Addison's Disease, I also have Hashimoto's Disease (which affects the thyroid), and have had episodes of Long QT (which can either be a genetic disorder or a reaction to medication, we have never been able to determine which one), and episodes of tachycardia and skyrocketing blood pressure, so I take meds for these issues as well.
Addison's Meds:
- I was on 5 mg of Dexamethasone. That is down from 10 mg that I was one at one point. In hindsight, a ridiculously high dose. I wonder what drugs the doctor that signed the prescription was on.
- About two months ago, I switched to 25 mg of Prednisone (15 in the am, 5 around 10am and 5 around 1pm). This is a high dose as well but considering my body was used to so much from the Dexamethasone, and because I was in a community theater performance (making for long days), I wanted to start high and be sure to avoid a crisis. I am glad we did too. The first day I felt like I was going to faint all day. The director pulled me aside to ask what was wrong. Randomly enough, her husband has Addison's so I told her I switched my steroid and she totally understood. Each day after, I felt a bit better.
- I am currently weaning my Prednisone dose down to 7.5 (5 in the am and 2.5 in the afternoon). I am doing this by cutting my Predinisone down by half a pill (or 2.5 mg) every week. My doctor recommended "tricking" my body by taking that 1/2 pill less every other day. Right now, I am taking 7.5/10 in the morning and then 2.5 in the early afternoon. Next week, I'll take 5 one day in the morning and 7.5 the next, then 5, then 7.5, and so on. Does that make sense?
- My goal is to get down to 7.5 mg/day because I understand 5 mg of Prednisone is equivalent to 20 mg of HC. And my next step is to switch to HC. Why? Well, I've received a lot of feedback since starting this blog and a number of people have said how much better they feel on HC and how few side effects they experience.
Note: Everyone who has reached out to me has had their own story and has found their own medication or mix of medications that works best for them. I heard from one person who takes Dexamethasone and only gained 5 lbs! But overall, it seems the majority of people feel best on HC and experience the least side effects.
Other Meds:
- Novotiral (1 pill in the morning for hypothyroidism)
- Metaprolol (a beta blocker I take 50 mg of in the morning for heart issues)
- Calcium - I take twice a day since steroids make you at higher risk for osteoporosis
- Vitamin D - I also take this twice a day since the last time I had my Vitamin D checked it was very low
- Vitamin E - I'm not even sure why I take this but I have two big bottles I bought at some point, so I take two Vitamin E pills a day
- Adepisque - a combo of three meds (Amitriptilina HCI, perfenazina and diazepam) that I take in the evening. It helps me sleep, helps me not have nightmares, and is an anti-depressant as well.
Supplements I plan to start taking:
- Magnesium
- Vitamin C
- Vitamin B complex (I had B12 sublingual tablets I was taking but I just ran out)
- DHEA
I will keep you posted as I change meds and add supplements and let you know of any positive or negative changes I feel.
I think the main thing I have learned through researching this all, is that Addison's Disease is NOT a one treatment fits all situation! I don't think I even heard from two people who took the same dose of the same med, at the same times. It's all about what feels best for your body - something only YOU can tell. Your doctor can't tell. Your partner or parent can't tell. If you aren't happy with how you feel, don't give up. There are only about 17 million miracle cures out there and I'm going to try them all.
Maybe I should have called myself the Addison guinea pig. Oh well. I love alliteration. Always have, always will.
Love,
an Addison Alien
Here's what I am on, what I used to be on, and what I am trying to transition toward.
You should probably know that in addition to Addison's Disease, I also have Hashimoto's Disease (which affects the thyroid), and have had episodes of Long QT (which can either be a genetic disorder or a reaction to medication, we have never been able to determine which one), and episodes of tachycardia and skyrocketing blood pressure, so I take meds for these issues as well.
Addison's Meds:
- I was on 5 mg of Dexamethasone. That is down from 10 mg that I was one at one point. In hindsight, a ridiculously high dose. I wonder what drugs the doctor that signed the prescription was on.
- About two months ago, I switched to 25 mg of Prednisone (15 in the am, 5 around 10am and 5 around 1pm). This is a high dose as well but considering my body was used to so much from the Dexamethasone, and because I was in a community theater performance (making for long days), I wanted to start high and be sure to avoid a crisis. I am glad we did too. The first day I felt like I was going to faint all day. The director pulled me aside to ask what was wrong. Randomly enough, her husband has Addison's so I told her I switched my steroid and she totally understood. Each day after, I felt a bit better.
- I am currently weaning my Prednisone dose down to 7.5 (5 in the am and 2.5 in the afternoon). I am doing this by cutting my Predinisone down by half a pill (or 2.5 mg) every week. My doctor recommended "tricking" my body by taking that 1/2 pill less every other day. Right now, I am taking 7.5/10 in the morning and then 2.5 in the early afternoon. Next week, I'll take 5 one day in the morning and 7.5 the next, then 5, then 7.5, and so on. Does that make sense?
- My goal is to get down to 7.5 mg/day because I understand 5 mg of Prednisone is equivalent to 20 mg of HC. And my next step is to switch to HC. Why? Well, I've received a lot of feedback since starting this blog and a number of people have said how much better they feel on HC and how few side effects they experience.
Note: Everyone who has reached out to me has had their own story and has found their own medication or mix of medications that works best for them. I heard from one person who takes Dexamethasone and only gained 5 lbs! But overall, it seems the majority of people feel best on HC and experience the least side effects.
Other Meds:
- Novotiral (1 pill in the morning for hypothyroidism)
- Metaprolol (a beta blocker I take 50 mg of in the morning for heart issues)
- Calcium - I take twice a day since steroids make you at higher risk for osteoporosis
- Vitamin D - I also take this twice a day since the last time I had my Vitamin D checked it was very low
- Vitamin E - I'm not even sure why I take this but I have two big bottles I bought at some point, so I take two Vitamin E pills a day
- Adepisque - a combo of three meds (Amitriptilina HCI, perfenazina and diazepam) that I take in the evening. It helps me sleep, helps me not have nightmares, and is an anti-depressant as well.
Supplements I plan to start taking:
- Magnesium
- Vitamin C
- Vitamin B complex (I had B12 sublingual tablets I was taking but I just ran out)
- DHEA
I will keep you posted as I change meds and add supplements and let you know of any positive or negative changes I feel.
I think the main thing I have learned through researching this all, is that Addison's Disease is NOT a one treatment fits all situation! I don't think I even heard from two people who took the same dose of the same med, at the same times. It's all about what feels best for your body - something only YOU can tell. Your doctor can't tell. Your partner or parent can't tell. If you aren't happy with how you feel, don't give up. There are only about 17 million miracle cures out there and I'm going to try them all.
Maybe I should have called myself the Addison guinea pig. Oh well. I love alliteration. Always have, always will.
Love,
an Addison Alien
Wednesday, December 9, 2015
17 Problems Only People With Autoimmune Diseases Understand
by
#fightforimmunity
1. The hardest part is explaining your disease.
Columbia Pictures / Via degrassi.wikia.com
Because there are so many! Lupus, Crohn’s, MS, arthritis, the list goes on and on.
2. And spending all that time in bed or at the hospital means you get to know yourself like, REALLY well.
Warner Bros. / Via rebloggy.com
3. When you first got sick, your doctors probably thought you were faking it.
SNL Studios / Via leftphalange.tumblr.com
4. Even though you knew that you weren’t, due to the incredible amount of pain you were in.
NBC / Via gifrific.com
Also known as your “Doctors are all f*cking morons” phase.
5. When you finally got diagnosed with an autoimmune disease, you first wanted to tell all the doctors who didn’t believe you.
NBC / Via reactiongifs.com
NO, I WAS NOT FAKING IT. WHICH I TOLD YOU, REPEATEDLY.
6. The struggle to fight exhaustion is real.
Metro-Goldwyn-Mayer / Via bellecs.tumblr.com
OK, today I’m going to get out of bed and….oh wait. Nope. That’s all I’m doing.
7. Trying to exert yourself via any form of strenuous exercise?
United Artists / Via sik3rning.tumblr.com
8. Sometimes it’s hard to follow your doctor’s advice on dietary restrictions.
NBC / Via giphy.com
9. But you’re not perfect, so there are cheat days.
NBC / Via 30rocknbc.tumblr.com
10. Which you immediately regret.
Fox / Via betweenscreens.com
There’s a reason why you have those restrictions in the first place.
11. Flare ups can come on pretty quickly.
BBC / Via gifemotions.tumblr.com
12. So making plans with your friends can be tough.
Disney / Via animated-disney-gifs.tumblr.com
SO. MUCH. #FOMO.
13. In fact, even when your disease is under control, you’re always prepared for things to change.
CBS / Via rebloggy.com
14. Stress is particularly bad for your disease.
Fuse / Via giphy.com
15. So you’ve learned how to pull yourself together, even in the toughest of times.
Fox / Via giphy.com
16. And even though sometimes you feel down…
Showtime / Via giphy.com
17. …in the end, your disease has made you a better and more unique person.
Disney / Via missparkle.tumblr.com
a.k.a #Fabulous
So haters to left, cause there are 50 million of us, and we’re here to stay!
20th Century Fox / Via otakusiren.tumblr.com
Tuesday, December 8, 2015
"I Must Have Met Your Sister"
Yup, I've heard that. More than once. More than twice. I'd guess at least a dozen times over the last year.
Please understand my two sisters literally live in another country.
So, what they are really saying is, "I thought I met you but you weren't fat".
The funny thing is, before I started taking steroids and my thyroid went from hyper to hypo, people would pick on me for being too thin.
You really can't win. It seems a woman's body can always be improved upon. And it's every asshole's right to tell you how.
If anything, I found people were much more likely to tell me to my face what I needed to do to gain weight. When it comes to being overweight, people prefer to talk behind my back. I had someone tell me today that a few people have asked her why I "gained so much weight?"
You know, for the same reason everyone else does:
for FUN!
*Please note sarcasm*
Part of me wants to be catty and say things like - you've always been fat, what's your excuse?
Or, you had a kid 3 years ago and still look like you're in your second trimester.
Or, I can lose weight, you can't lose ugly.
Or, I'd rather have a little chub stuck to me than that loser you call your husband.
Mostly, I want to say things like that because that's what would happen on a TV show and I take all my cues on behavior from network sitcoms.
But really, I try not to give a f*uck.
Some of the best advice I have ever received is from the book The Four Agreements, by Don Miguel Ruiz. One of the agreements is to not take anything personally.
It sounds simple on the surface but it's not. You see, it doesn't say "don't take anything negative others say about you personally". It says not to take ANYTHING personally. Which means compliments too.
I'll let you google the rest because he clearly can explain the entire concept than me. But when you stop basing your self-worth on what others say - good or bad - but find your own internal standard, it becomes pretty easy to not care what other people say.
So when someone says they think they must have met my sister, I smile, and I say, "Nope, that was me. I just look a little different now".
And then I call them names silently in my head. I never said I was perfect.
Love,
an Addison alien
Please understand my two sisters literally live in another country.
So, what they are really saying is, "I thought I met you but you weren't fat".
The funny thing is, before I started taking steroids and my thyroid went from hyper to hypo, people would pick on me for being too thin.
You really can't win. It seems a woman's body can always be improved upon. And it's every asshole's right to tell you how.
If anything, I found people were much more likely to tell me to my face what I needed to do to gain weight. When it comes to being overweight, people prefer to talk behind my back. I had someone tell me today that a few people have asked her why I "gained so much weight?"
You know, for the same reason everyone else does:
for FUN!
*Please note sarcasm*
Part of me wants to be catty and say things like - you've always been fat, what's your excuse?
Or, you had a kid 3 years ago and still look like you're in your second trimester.
Or, I can lose weight, you can't lose ugly.
Or, I'd rather have a little chub stuck to me than that loser you call your husband.
Mostly, I want to say things like that because that's what would happen on a TV show and I take all my cues on behavior from network sitcoms.
But really, I try not to give a f*uck.
Some of the best advice I have ever received is from the book The Four Agreements, by Don Miguel Ruiz. One of the agreements is to not take anything personally.
It sounds simple on the surface but it's not. You see, it doesn't say "don't take anything negative others say about you personally". It says not to take ANYTHING personally. Which means compliments too.
I'll let you google the rest because he clearly can explain the entire concept than me. But when you stop basing your self-worth on what others say - good or bad - but find your own internal standard, it becomes pretty easy to not care what other people say.
So when someone says they think they must have met my sister, I smile, and I say, "Nope, that was me. I just look a little different now".
And then I call them names silently in my head. I never said I was perfect.
Love,
an Addison alien
Picture Proof
The steroid swelling doesn't stop me from smiling and dancing. (I'll explain my senior dance partner in a later post.)
An Addison Alien
There's a lot of aliens out there!
Wow, I am so surprised at how many hits this little blog has received in the less than 24 hours since I put it up. I guess there are more Addison Aliens than I thought! I'm so humbled that even one person would take the time to read my long and rambling posts. Thank you all so much!
The intention of this blog is to share my experiences in the hopes of helping others. Since I'm writing for you, I thought I should ask: what do you want to read about?
What treatments/options/medications/supplements/diets/etc do you want to read about? What else interests you?
Thanks again for reading!
Love,
Your Addison Alien friend
The intention of this blog is to share my experiences in the hopes of helping others. Since I'm writing for you, I thought I should ask: what do you want to read about?
What treatments/options/medications/supplements/diets/etc do you want to read about? What else interests you?
Thanks again for reading!
Love,
Your Addison Alien friend
Welcome to Addison's Disease
Most of you know this blog was started after I wrote "My Story: Part 1". It was originally a very long Facebook post and it received a lot of good feedback. So much so, I thought I would start a blog and keep track of all the great information and advice I was receiving from various Facebook support groups.
A wonderful woman sent me this message after reading my post. She has graciously allowed me to share it here. It is for those newly diagnosed with Addison's Disease, but I have to say I learned a thing or two and I was diagnosed almost 2 years ago. She says she's not a writer. Clearly, she is lying.
Dear newbie:
I hope this helps to explain this autoimmune (you did nothing to get it), rare (I’ve read that only 1 in 100,000 people get it), chronic (goes on and on and on…) disease. Please remember that I'm not in any way medically trained. This is just thoughts put together by someone who has lived with primary Addison's disease for 47 years.
#1 Day to day living with Addison’s Disease can be complicated for many. Although not all of us with the disease experience the same daily challenges, the basis of living with Addison’s can be challenging.
Once you find out what your correct dosage of steroids is, you can probably live about the same as you did before diagnosis. But there will be changes in your life. You will need to remember to take your medication on a daily schedule. You will find out what times work best for the type of steroid you use.
Here is what I have found out about living with Addison's. Remember, this is my version based on what I’ve lived and learned from others over the years. I’m no medical person, just someone who has lived with Addison’s for 47 yrs.
For a person without Addison’s, the body starts to produce it’s cortisol/adrenaline around 5 or 5:30 a.m. By 6 a.m. or so, he/she is waking up. That is why many people wake up just before their alarm goes off during the week and will be awake earlier than they want on the weekends and not able to fall back asleep. It’s the body getting ready to face the challenges of being awake during the day.
Night time comes. You start getting sleepy. It’s that the cortisol/adrenaline in your system is lower than it was first thing in the morning. You start out with a higher dose first thing in the morning, the body keeps you supplied with what you need during the day and slowly tapers off until bedtime. You fall asleep, but there’s still that pituitary gland monitoring your body just in case something happens during the night, and you need to be wide awake for what came up to be addressed before morning.
Not so for those with Addison’s Disease. The body produces no cortisol/adrenaline. To get cortisol in our system, we need to take a steroid replacement. Steroids come in several forms: hydrocortisone, prednisone, cortisone acetate, prednisone, dexamethasone, and some others I might not know about. Each one is released at a different rate and has slightly different properties. Once we take the steroid, it takes from 30 min. to 45 min. to be absorbed into the system to give the energy the Addisonian needs to face the day.
Until it is in our system, we don’t have the energy it takes to perform “normally”. What does this mean on a day to day basis? If we want to be awake and functioning by 6 a.m., we need to set the alarm to wake up at 5 a.m. Then we need to get up, take the steroid, and go back to bed for an hour. As the cortisone gets into the system, it slowly wakes us up. Then we try to get about a normal day – having breakfast, getting ready for a job, driving to work. In a perfect scenario, this would work. Who wants to wake up 1 hr. earlier than the rest of the world every day to take a pill this way??
My endocrinologist once told me it was like a person who is going on a long road trip and would be driving all day long and possibly into the night. If you get on the road with just a few fumes of gasoline in your gas tank, you will need to be trying to constantly fill up the tank while you are continuing to drive down the road; however, if you start with a full tank, you don’t have to fill up constantly or worry about the level of gasoline in the tank for a long time.
Non-Addisonian: During the day, any time the body needs more energy to cope with stress, the adrenals in a non-Addisonian will provide the body with more cortisol/adrenaline to meet the level needed to get through the situation. At any time and no matter what the situation, the body will be ready to face whatever life throws at you.
A long, difficult day with many challenges at work while you’re not feeling well and mentally stressed about a family situation waiting to be discussed or ongoing at home: no problem. The pituitary and adrenals take care of you with as much cortisol/adrenaline as you need. You can handle it.
Need to stay up late (party; bring home work to get done for the next day; sick child waking you up during the night? etc.)?
No problem.
Need to be in extreme heat or cold?
No problem.
Didn’t get enough sleep the last few nights?
No problem.
Some extra physical activity you need/want to do?
No problem.
The list goes on and on with any change or challenge you face every day. “Fight or flight” and you’re ready for either. This is constantly going on in your body 24/7/365.
Addisonian: You wake up and get ____mg. of steroid. After 45 min. to an hour, you can start to function. Depending on the steroid replacement we are on and the medication schedule, we don’t get another dose until that time. What if all of a sudden after being up for 3 hrs., we face something we refer to as “stress”? No extra steroids in our system until next dose time. I’ve seen 9 or 10 endocrinologists (specialists in Addison’s Disease) over the 40+ years I’ve had this disease, and they all tell me that the only time I should increase steroids is if I’m running fever over 100 degrees, having surgery, have the flu (vomiting and diarrhea), or something major like that.
We face the same challenges as any other person, and I’m sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, I’m limited to ___mg. of hydrocortisone. When it’s gone; it’s gone.
There is really no conclusive study I’ve heard about that tells exactly how much steroid I should take. Everybody is different and has different needs. I have other medical problems, but there is no research on how much steroid I need to handle them. We try to live through a whole day as a non-Addisonian taking the dose of steroid prescribed by our endocrinologist without being tired earlier than “normal people’s” bedtime. It doesn’t always happen that way.
Diabetics have a tough time, I know. My father has diabetes. For those with disease, there is a glucose monitor. They can check their blood sugar whenever necessary and as many times a day as they think there might be a problem.
Unfortunately, there is no way for an Addisonian to know how much steroid is in their system. All I know is when I feel so bad that I need to lie down before I fall down, muscles start aching bad, I feel nauseated, and other symptoms, I then know that I’m low on steroids. I take what endocrinologists call a stress dose. It’s an extra amount of steroid to prevent me from going into an Addisonian crisis.
The crisis situation is when you are really weak and probably on the verge of losing consciousness. This situation calls for someone to get you to an emergency room immediately. At this point, you need an IV with 100 mg. hydrocortisone to pull you through. It is life threatening. I’m not exaggerating here. The bad part is that there is no way to determine exactly how much extra steroid to take when you notice that things are starting to go bad. If there were only a type of tester as there is for those with diabetes, many of us would not have the problems we do.
Sleep time? Not quite the same as non-Addisonian. If there’s still too much steroids floating around the system, you can’t fall asleep. That’s the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good night’s sleep on a regular basis. This has been a big problem for me for 45+ years.
The other part of the adrenal gland helps to control blood pressure. It balances the sodium and potassium. Most people are aware of this with all the publicity about high blood pressure. Addisonians have the opposite problem. We need the mineralocorticoid to help retain enough sodium to actually have a blood pressure. Our problem is the opposite of the rest of the world.
Many of us, those with primary Addisons, need to take a medication called florinef to help retain salt in our body. We are also told to put as much salt on food as we can stand. This is because for the florinef to help the body hold the sodium, we need to have the sodium in our systems.
I live in a very hot, humid climate. During the summer, I need to take salt tablets in addition to the florinef and added salt on my food. I cannot tolerate heat, even with the medications. My personal limit is 85 degrees. After that you can tell which one I am in a group outside. I start to sweat profusely, breathe heavily, and pant like a dog who has been left outside in the heat without any water. I start to get weak and wind up sitting down or finding some air conditioning.
Again, I’m not able to participate due to my body not responding to the need.
Again, no way to determine how much of the florinef and/or salt I need.
This doesn’t take long to happen. I’ve gone out to get the mail in the middle of a hot summer afternoon and come inside with my blouse all wet due to sweating, very thirsty, and very tired. I could go on and on with examples of what the heat does, and how little time it takes to be in this heat before I start to feel ill. Over the years I’ve learned what to do to avoid these problems and crisis. Unfortunately, it means that I can’t participate in many activities or family outdoor get-togethers.
This is just a brief summary of what I find I live daily.
There is also the issue of side effects of long term steroid use that I wasn’t told about when I was diagnosed. Steroids can cause osteoporosis, so DEXA bone scans should be done and we should take extra calcium daily. I didn’t find out about this until I’d had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, I’ve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin – I can wake up and find small openings in my fingers or on my nose from pin head size to the size of a small paper cut; “moon face” as it’s referred to – puffy cheeks due to retaining fluids from taking too much cortisone – but what do I do if I need it to keep me alive? As can be expected, there is more to this which you can research, but I’ll end this here.
Summing it up, many endocrinologists seem to have the opinion that as long as the cortisol and florinef are taken daily and the electrolytes are in the normal range on blood work, the Addison’s Disease is under control until the patient gets to a crisis or the verge of a crisis. This is not what I live, and from others with this chronic, rare disease have said, many of their lives are not like they were pre-diagnosis.
-- Vicky Pantusa
A wonderful woman sent me this message after reading my post. She has graciously allowed me to share it here. It is for those newly diagnosed with Addison's Disease, but I have to say I learned a thing or two and I was diagnosed almost 2 years ago. She says she's not a writer. Clearly, she is lying.
Dear newbie:
I hope this helps to explain this autoimmune (you did nothing to get it), rare (I’ve read that only 1 in 100,000 people get it), chronic (goes on and on and on…) disease. Please remember that I'm not in any way medically trained. This is just thoughts put together by someone who has lived with primary Addison's disease for 47 years.
#1 Day to day living with Addison’s Disease can be complicated for many. Although not all of us with the disease experience the same daily challenges, the basis of living with Addison’s can be challenging.
Once you find out what your correct dosage of steroids is, you can probably live about the same as you did before diagnosis. But there will be changes in your life. You will need to remember to take your medication on a daily schedule. You will find out what times work best for the type of steroid you use.
Here is what I have found out about living with Addison's. Remember, this is my version based on what I’ve lived and learned from others over the years. I’m no medical person, just someone who has lived with Addison’s for 47 yrs.
For a person without Addison’s, the body starts to produce it’s cortisol/adrenaline around 5 or 5:30 a.m. By 6 a.m. or so, he/she is waking up. That is why many people wake up just before their alarm goes off during the week and will be awake earlier than they want on the weekends and not able to fall back asleep. It’s the body getting ready to face the challenges of being awake during the day.
Night time comes. You start getting sleepy. It’s that the cortisol/adrenaline in your system is lower than it was first thing in the morning. You start out with a higher dose first thing in the morning, the body keeps you supplied with what you need during the day and slowly tapers off until bedtime. You fall asleep, but there’s still that pituitary gland monitoring your body just in case something happens during the night, and you need to be wide awake for what came up to be addressed before morning.
Not so for those with Addison’s Disease. The body produces no cortisol/adrenaline. To get cortisol in our system, we need to take a steroid replacement. Steroids come in several forms: hydrocortisone, prednisone, cortisone acetate, prednisone, dexamethasone, and some others I might not know about. Each one is released at a different rate and has slightly different properties. Once we take the steroid, it takes from 30 min. to 45 min. to be absorbed into the system to give the energy the Addisonian needs to face the day.
Until it is in our system, we don’t have the energy it takes to perform “normally”. What does this mean on a day to day basis? If we want to be awake and functioning by 6 a.m., we need to set the alarm to wake up at 5 a.m. Then we need to get up, take the steroid, and go back to bed for an hour. As the cortisone gets into the system, it slowly wakes us up. Then we try to get about a normal day – having breakfast, getting ready for a job, driving to work. In a perfect scenario, this would work. Who wants to wake up 1 hr. earlier than the rest of the world every day to take a pill this way??
My endocrinologist once told me it was like a person who is going on a long road trip and would be driving all day long and possibly into the night. If you get on the road with just a few fumes of gasoline in your gas tank, you will need to be trying to constantly fill up the tank while you are continuing to drive down the road; however, if you start with a full tank, you don’t have to fill up constantly or worry about the level of gasoline in the tank for a long time.
Non-Addisonian: During the day, any time the body needs more energy to cope with stress, the adrenals in a non-Addisonian will provide the body with more cortisol/adrenaline to meet the level needed to get through the situation. At any time and no matter what the situation, the body will be ready to face whatever life throws at you.
A long, difficult day with many challenges at work while you’re not feeling well and mentally stressed about a family situation waiting to be discussed or ongoing at home: no problem. The pituitary and adrenals take care of you with as much cortisol/adrenaline as you need. You can handle it.
Need to stay up late (party; bring home work to get done for the next day; sick child waking you up during the night? etc.)?
No problem.
Need to be in extreme heat or cold?
No problem.
Didn’t get enough sleep the last few nights?
No problem.
Some extra physical activity you need/want to do?
No problem.
The list goes on and on with any change or challenge you face every day. “Fight or flight” and you’re ready for either. This is constantly going on in your body 24/7/365.
Addisonian: You wake up and get ____mg. of steroid. After 45 min. to an hour, you can start to function. Depending on the steroid replacement we are on and the medication schedule, we don’t get another dose until that time. What if all of a sudden after being up for 3 hrs., we face something we refer to as “stress”? No extra steroids in our system until next dose time. I’ve seen 9 or 10 endocrinologists (specialists in Addison’s Disease) over the 40+ years I’ve had this disease, and they all tell me that the only time I should increase steroids is if I’m running fever over 100 degrees, having surgery, have the flu (vomiting and diarrhea), or something major like that.
We face the same challenges as any other person, and I’m sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, I’m limited to ___mg. of hydrocortisone. When it’s gone; it’s gone.
There is really no conclusive study I’ve heard about that tells exactly how much steroid I should take. Everybody is different and has different needs. I have other medical problems, but there is no research on how much steroid I need to handle them. We try to live through a whole day as a non-Addisonian taking the dose of steroid prescribed by our endocrinologist without being tired earlier than “normal people’s” bedtime. It doesn’t always happen that way.
Diabetics have a tough time, I know. My father has diabetes. For those with disease, there is a glucose monitor. They can check their blood sugar whenever necessary and as many times a day as they think there might be a problem.
Unfortunately, there is no way for an Addisonian to know how much steroid is in their system. All I know is when I feel so bad that I need to lie down before I fall down, muscles start aching bad, I feel nauseated, and other symptoms, I then know that I’m low on steroids. I take what endocrinologists call a stress dose. It’s an extra amount of steroid to prevent me from going into an Addisonian crisis.
The crisis situation is when you are really weak and probably on the verge of losing consciousness. This situation calls for someone to get you to an emergency room immediately. At this point, you need an IV with 100 mg. hydrocortisone to pull you through. It is life threatening. I’m not exaggerating here. The bad part is that there is no way to determine exactly how much extra steroid to take when you notice that things are starting to go bad. If there were only a type of tester as there is for those with diabetes, many of us would not have the problems we do.
Sleep time? Not quite the same as non-Addisonian. If there’s still too much steroids floating around the system, you can’t fall asleep. That’s the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good night’s sleep on a regular basis. This has been a big problem for me for 45+ years.
The other part of the adrenal gland helps to control blood pressure. It balances the sodium and potassium. Most people are aware of this with all the publicity about high blood pressure. Addisonians have the opposite problem. We need the mineralocorticoid to help retain enough sodium to actually have a blood pressure. Our problem is the opposite of the rest of the world.
Many of us, those with primary Addisons, need to take a medication called florinef to help retain salt in our body. We are also told to put as much salt on food as we can stand. This is because for the florinef to help the body hold the sodium, we need to have the sodium in our systems.
I live in a very hot, humid climate. During the summer, I need to take salt tablets in addition to the florinef and added salt on my food. I cannot tolerate heat, even with the medications. My personal limit is 85 degrees. After that you can tell which one I am in a group outside. I start to sweat profusely, breathe heavily, and pant like a dog who has been left outside in the heat without any water. I start to get weak and wind up sitting down or finding some air conditioning.
Again, I’m not able to participate due to my body not responding to the need.
Again, no way to determine how much of the florinef and/or salt I need.
This doesn’t take long to happen. I’ve gone out to get the mail in the middle of a hot summer afternoon and come inside with my blouse all wet due to sweating, very thirsty, and very tired. I could go on and on with examples of what the heat does, and how little time it takes to be in this heat before I start to feel ill. Over the years I’ve learned what to do to avoid these problems and crisis. Unfortunately, it means that I can’t participate in many activities or family outdoor get-togethers.
This is just a brief summary of what I find I live daily.
There is also the issue of side effects of long term steroid use that I wasn’t told about when I was diagnosed. Steroids can cause osteoporosis, so DEXA bone scans should be done and we should take extra calcium daily. I didn’t find out about this until I’d had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, I’ve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin – I can wake up and find small openings in my fingers or on my nose from pin head size to the size of a small paper cut; “moon face” as it’s referred to – puffy cheeks due to retaining fluids from taking too much cortisone – but what do I do if I need it to keep me alive? As can be expected, there is more to this which you can research, but I’ll end this here.
Summing it up, many endocrinologists seem to have the opinion that as long as the cortisol and florinef are taken daily and the electrolytes are in the normal range on blood work, the Addison’s Disease is under control until the patient gets to a crisis or the verge of a crisis. This is not what I live, and from others with this chronic, rare disease have said, many of their lives are not like they were pre-diagnosis.
-- Vicky Pantusa
Monday, December 7, 2015
Why Blog?
Mostly because I love to write. I think I always have and I know I always will. I'd rather write historical fiction or the next YL smash hit but here's the thing. I have Addison's Disease and as much as I don't want to let it define me, it does dictate my lifestyle in many ways.
Don't get me wrong. Many of these ways are good. Like quitting smoking (sigh) and drinking (yes, really). It directs me towards reading about the latest health trends and trying new things like kombucha (probably spelled wrong and I don't care and also it's gross, don't drink it).
As I've stumbled along since getting diagnosed, I've made a lot of mistakes. I've done dumb things, like listen to doctors, and take the medications they prescribe me. I often felt alone. I Googled and Googled and found so little relevant information on Addison's out there. Facebook groups seemed to be the best informed, which is its own form of crazy. How is it possible that a random stranger's advice online is better than a medical doctor's? I don't know how but I suspect it has something to do with the kind of magic that keeps Miley Cyrus famous.
They say, write what you know (you know, the great "they", much like the "royal we"). Living with Addison's Disease day in and day out is what I know. So I'm going to go ahead and write about it. Because the most defining trait of a writer is one who actually writes. For some reason, this is distinguishable from thinking about what one would write. Not to worry, surely we will soon be able to to download our thoughts and have computers type them out for us.
In the meanwhile, I blog. Here are some of the things I plan to write about and/or try:
- finding the right medication for you
- what the heck causes Addison's Disease in the first place
- gaining weight on steroids
- trying to lose weight on steroids
- Ayurveda
- yoga to stimulate the adrenals
- essential oils to stimulate the adrenals
- how Hashimoto's and Addison's are connected
- other health problems caused by Addison's
- skinny vs fat: someone always has something to say
- Pink Himalayan Sea Salt
- DHEA
- water grain kefir
- different diets and how I havefailed tried each one
I figure if I am going to try all these things, I may as well keep record of it. And maybe someone else out there will read this and not make the same mistakes I made. That is my intention.
I should probably mention that I am not a doctor, do not have any medical training, and am not advising you to go against your own doctor's orders. Everything I do, I do under my own medical team and you should too.
Which I really shouldn't even have to mention but apparently one must act as if everyone who reads blogs online is an idiot. I don't think you're dumb (unless you plan to vote for Donald Trump).
Love,
an Addison alien
Don't get me wrong. Many of these ways are good. Like quitting smoking (sigh) and drinking (yes, really). It directs me towards reading about the latest health trends and trying new things like kombucha (probably spelled wrong and I don't care and also it's gross, don't drink it).
As I've stumbled along since getting diagnosed, I've made a lot of mistakes. I've done dumb things, like listen to doctors, and take the medications they prescribe me. I often felt alone. I Googled and Googled and found so little relevant information on Addison's out there. Facebook groups seemed to be the best informed, which is its own form of crazy. How is it possible that a random stranger's advice online is better than a medical doctor's? I don't know how but I suspect it has something to do with the kind of magic that keeps Miley Cyrus famous.
They say, write what you know (you know, the great "they", much like the "royal we"). Living with Addison's Disease day in and day out is what I know. So I'm going to go ahead and write about it. Because the most defining trait of a writer is one who actually writes. For some reason, this is distinguishable from thinking about what one would write. Not to worry, surely we will soon be able to to download our thoughts and have computers type them out for us.
In the meanwhile, I blog. Here are some of the things I plan to write about and/or try:
- finding the right medication for you
- what the heck causes Addison's Disease in the first place
- gaining weight on steroids
- trying to lose weight on steroids
- Ayurveda
- yoga to stimulate the adrenals
- essential oils to stimulate the adrenals
- how Hashimoto's and Addison's are connected
- other health problems caused by Addison's
- skinny vs fat: someone always has something to say
- Pink Himalayan Sea Salt
- DHEA
- water grain kefir
- different diets and how I have
I figure if I am going to try all these things, I may as well keep record of it. And maybe someone else out there will read this and not make the same mistakes I made. That is my intention.
I should probably mention that I am not a doctor, do not have any medical training, and am not advising you to go against your own doctor's orders. Everything I do, I do under my own medical team and you should too.
Which I really shouldn't even have to mention but apparently one must act as if everyone who reads blogs online is an idiot. I don't think you're dumb (unless you plan to vote for Donald Trump).
Love,
an Addison alien
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