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
Thursday, December 10, 2015
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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