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
Showing posts with label moon face. Show all posts
Showing posts with label moon face. Show all posts
Tuesday, December 15, 2015
Tuesday, December 8, 2015
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
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
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