YES!!

Feeling sassy? Martini glass earrings with glass pearl. $10
Leave a comment or email hill.stpierre@gmail.com

 YES!!!
Don't get too excited. I celebrate all the good in my life I can.
I found a way to publish my H.Grace Catalog Directly onto my page!
 It is currently "Under Construction," but when finished will be able to be accessed by all who visit my website!
Currently, my creations are available by clicking on the necklace picture, which is a link that diverts you to facebook.
Unfortunately, it can only be viewed if you're a facebook member.
But not for long! I'm going to have a beautiful, professional looking header. Thank you all for reading and viewing.

Doing the Best with the knowledge we have

X came running into the bedroom screaming and crying hysterically, uncontrollably and inconsolably, waking me up last night. 

He told me dad had called him a bad word. 

I was groggy and suspicious about his tale knowing the day we had, that my cancer had grown, that I was again seeking treatment options, and that he'd said, even before this news, that nothing was making him happy, only basketball.

 I didn't question him. I just did as he asked: I held him tight, hugging and reassuring him that he was loved, etc. 

He's reacted like this to my reoccurences, or regrowths, before.

 Actually, he's matured with age, but has always responded in an age appropriate manner.

 We've known since he was 4 that he is depressed and anxious due to my "situation," that little problem that mommy has cancer that will probably never go away. 

With each relapse, he would have an age-appropriate breakdown. 

At five, he threw a temper tantrum, screaming kicking and saying he hated me and the few other words he knew. 

Temper tantrums are normal in 5 year olds, so what's normal for a 5 year old who hears mom's treatment has failed and will likely die?

 We've worked hard to make coping as easy as possible for him since my diagnosis: behavioral testing, counselors, group therapy, in-home behavioralists. 

None of these have fixed his breakdowns. None of these have cured me. So we do the best we can with the knowledge we have, and what we know is when one person in a family is diagnosed, the whole family is diagnosed.

We try to keep communication open so he has an "emotional language."

 We've read books, done play therapy, put him in karate, talked with him, answered his questions, and most importantly, tried to keep his environment happy, stable and full of love, role-modeling coping. 

When X said "nothing made him happy," before our bad news, I explained to him that was called depression, a serious form of sadness both dad and I have, especially in the winter.

 Seasonal affective disorder (SAD) is very real. 

I have suffered with it my entire life, as well as many members of my family.

 I told X depression makes you not like anything, get grumpy and frustrated, maybe want to cry or not do anything at all, and think nobody likes or loves you. 

Then we went to play basketball to work it out with me planning to get full spectrum lights for the house.

Full spectrum lighting, the most similar to real sun, is one of the few treatments for seasonal affective disorder. My mother used to shine lights on me when I was doing my homework. I'll do the same with X, but that will only take him so far with a sick mom.

Thank goodness we have a vacation to FL coming quick, but light is only a small portion of his needs. Fortunately, he talks to me. I explained to him that he doesn't always need to have something happen to feel terrible and "overwhelmed," in reference to his lie about the cause of his hysterics. 

I defined being overwhelmed as having too much happening, like school, basketball, therapy, karate, homework and my illness all at the same time, that it all feels like too much, and if one more thing is added, you feel like you'll go crazy!

 I told him I feel the same way sometimes, so does Dad and so does Nana.  

I remind him what he feels is normal and it's ok to be sad, angry, etc. What is right or wrong is how he handles those feelings.

But what happens when he can't breakdown with me anymore?

I remind him of his other support systems, and he has used them in the past.

This doesn't cure him, just as I have not been cured, but he is coping the best we can as we all are. 

Relax and Ponder the following. . .

1. I asked God for a bike, but I know God doesn't work that way, so I stole a bike and asked for forgiveness.
2. Going to church doesn't make you a Christian any more than standing in a garage makes you a car.
3. The last thing I want to do is hurt you, but it's still on the list.
4. If I agreed with you, we'd both be wrong. (I have to remember this one)
5. We never really grow up, we only learn how to act in public.
6. War does not determine who is right - only who is left.
7. Knowledge is knowing a tomato is a fruit; Wisdom is not putting it in a fruit salad.
8. Evening news is where they begin with 'Good evening', and then proceed to tell you why it isn't.
9. To steal ideas from one person is plagiarism; To steal from many is research.
10. A bus station is where a bus stops. A train station is where a train stops. On my desk, I have a work station.
11. Dolphins are so smart that within a few weeks of captivity, they can train people to stand on the very edge of the pool and throw them fish.
12. I thought I wanted a career, turns out I just wanted pay checks. 
13. A bank is a place that will lend you money, if you can prove that you don't need it.
14. Whenever I fill out an application, in the part that says "In an emergency, notify:" I put "DOCTOR".
15. I didn't say it was your fault, I said I was blaming you.
16. Why does someone believe you when you say there are four billion stars, but check when you say the paint is wet?
17. Why do Americans choose from just two people to run for president and 50 for Miss America?
18. A clear conscience is usually the sign of a bad memory.
19. You do not need a parachute to skydive. You only need a parachute to skydive twice.
20. The voices in my head may not be real, but they have some good ideas!
21. Always borrow money from a pessimist. He won't expect it back.
22. A diplomat is someone who can tell you to go to hell in such a way that you will look forward to the trip.
23. Money can't buy happiness, but it sure makes misery easier to live with.
24. I discovered I scream the same way whether I'm about to be devoured by a great white shark or if a piece of seaweed touches my foot.
25. I used to be indecisive. Now I'm not sure.
26. I always take life with a grain of salt, plus a slice of lemon, and a shot of tequila.
27. You're never too old to learn something stupid.
28. To be sure of hitting the target, shoot first and call whatever you hit the target.
29. Nostalgia isn't what it used to be.
30. A bus is a vehicle that runs twice as fast when you are after it as when you are in it.
31. Change is inevitable, except from a vending machine.

Treatment Deja Vu

I am having deja vu from five years ago.

 Yes, it's hard to believe I was officially diagnosed by biopsy with Hodgkin's on April 5 2006, five full years ago. 

I knew I had cancer in Jan. I had large, firm masses in my neck. I felt like I was choking when I swallowed and suffocating when I laid down. I had a constant low grade fevers with fatigue that forced me to take naps or chug caffeine. I was nauseas and would throw up on a whim. 

I'd tell this and show the masses to any doc walking by the ICU where I worked that would listen, but young cancers are rare, more rare than "second year syndrome," aka paranoia. 

Back then, I decided to wait until after a family vacation to FL to push for an official diagnosis. 

Why worry everyone?

So, that's what I did. 

There I knew something was wrong when at 2pm my Grandparents were playing bocci ball and drinking margaritas by the pool while I napped in the condo. My mom and grandma giggled and tried to keep me away from the alcohol, excited that the fatigue and nausea meant X was getting a sibling.

Whoa was that off.

Now, five years later, I'm in a similar situation. 

I met with Dr. G yesterday to review my PET scan results from Tues.

Last week, Dr. G canceled my chemo wondering if the extremely low dose was still effective and if it was worth the extreme side effects, such as bone marrow failure and septicemia, I had experienced. He also wondered if my symptoms, increased pain, fatigue and nausea, the same as 5 years ago, were attributed to increased disease. 

Good instincts Dr. G. It turned out it he was right.

When he didn't run in like a champion after winning a big game I knew the news wasn't great. 

My cancer has returned to an amount equal or greater than what I had in June. The velbam had almost eradicated all my disease in Nov. After this point I took a long treatment vacation for the holidays and resumed in January, but after two doses of a chemotherapy that shouldn't even alter my blood counts, I suffered from a severe infection.

The Hodgkin's now is located in my abdomen and pelvis, where in the beginning it was limited to my chest. My symptoms now include bloating, abdominal pain, flank pain, and urinary hesitancy.

Lymphadenopathy (swollen lymph nodes) is causing right-sided hydronephrosis, or kidney swelling from a back-up of urine. My kidney marker blood levels are normal, but again I'm threatened with the placement of a stent. 

My liver and spleen are normal. Everywhere else is not.

So what's the plan?

Luckily, I trust my main man Dr. G at DHMC and his team. I also know he's been stalked to the point of annoyance by his collegues suggestions on how to treat me.

We're Bendamustine (treanda) which has been used for CLL, non-hodgkins, and recently hodgkin's post transplant patients. It is "gentler" than ABVD or CHOP, but I could barely handle the "V" in ABVD therapy.

This is given over the course of two days and causes a blood count drop 10 days-2 weeks after treatment. 

I've canceled my Monday appointment with Dr. Alyea, who could offer me trial options in combating my disease, which I am not interested in at this point due to the inconvenience it would cause me and my family, such as moving to Boston to undergo treatment.

I did purchase my Moss Report and plan on consulting him. I will continue to manage my diet and use complementary therapy along with this chemotherapy treatment. 

I'm scheduled to start Mon. March 14, again, after our family trip to Florida.

We're going to Disney World!!

Divine Guidance

One of my earliest memories is lying in bed, deathly still, slightly afraid, and listening to the blood rush through my body. My 7 year old self imagined this was God's army marching towards earth in preparation for the war between good and bad. 

Who knows where this nighttime idea came from? 

I am catholic, but at 7 I had not been exposed to the end of times scriptures. In fact, it was the opposite. I'd only been exposed to the prayers, the Ten Commandments and The Tenet that You love everybody as you love yourself. God was an ubiquitous all-loving entity.

Where ever this idea came from, I don't know, but I do know these thoughts, dreams, visions, guidance, whatever you'd like to call them, have stayed with me throughout my life.

They've stayed with me because I've kept my heart open, praying for guidance and acceptance. 

However, even I, who is strong in belief and faith, have been hesitant to write about my experiences for fear of alienating others even though there is a huge, often unspoken, connection between faith and dying.  

Me, silly me, who has no problem posting about politics like my life depends on it, has hesitated to post about the religious beliefs that have guided me to put my heart into my messages.

Me, who started writing with a pledge that whatever I was embarrassed about going through, whatever I wanted to hide, needed to be written so others didn't feel alone or ashamed. 


For as long as I can remember, I've had a close relationship with my higher power. This relationship has given me the knowledge that I am here for a reason, that I have a purpose, that I'll always have my needs met if I continue to have faith, that I'll remain safe, and all the bad that happens to me, has a reason.

When I was twelve I read Andrew Weil's Spontaneous Healing for fun at the beach on vacation. 

Yes, I have always been that kind of science geek. 

That was when I became obsessed with virally induced diseases, such as HIV and blood cancers. Alongwith the aforementioned information, A 1993 study linked living near power lines in Nevada to childhood leukemia. I lived near power lines. It was then I became distracted by the idea that I'd get leukemia and die young. I'd die by thirty, to be exact.

That was also the year I contracted mononucleosis, or the Epstein-Barr Virus, the only known link to contracting blood cancers. I started then to study alternative treatments for improving all aspects of health, starting with Native American remedies (myself being minimally Native American)and moving on to aromatherapy, massage, etc., anything available to a 12 year old. 

I knew then what I still know, that a cure is in the world, we just haven't found it yet. I pledged to myself that if I ever found any information that would cure these ailments I'd find a way to give it to the world for FREE. I'd dream of inventing the cure, a long series of equations, and blasting it across the front page of every newspaper in the world.

Even then there was the issue of whether people could afford their medications to survive, and even at 12, I was not going to allow that to happen. I knew if I gave the directions that anybody anywhere with the proper ingredients could create it themselves.

Following my heart, my dreams, and signs guided me to The College of New Rochelle. I was cleaning my room thinking of where I'd go after high school when I stumbled on a series of prayer books, all published in New Rochelle, NY. 

Later, I was researching going abroad with a charitable organization, Cross-Cultural Solutions, only to realize their home base was located in New Rochelle, NY.

I entered college in 2001 as a communications/journalism major hoping to pioneer a new, rarely recognized genre of electronic publishing, but had a nagging that I my future would be more secure with nursing.

My mom says she'll never forget the day I told her that, "I could be a journalist without a degree, but i could not be a nurse without an education."

After Sept. 11 I prayed for an answer regarding my major change and that night I was clearly told "Go to nursing."

I did and never looked back, hoping that I would use nursing as a specialty in my investigative journalism pieces in the future.

No one knew then what we all know now: that I'd barely be able to practice as an RN but my knowledge would save my life, and I would do exactly what I'd always dreamed of. 

My faith has allowed me to view my suffering as a divine purpose, as a cross to be carried, a challenge that was given to me by a all-knowing higher being for a greater good.

It has provided comfort where no other could. 

One thing I know to be true, with out quantifiable evidence, is I would never have survived as long as I have without my faith and without the prayers of others. 

 

Huffing, Again.

I've been Huffing again.

No, not the nasty drug habit of inhaling pollutants and carcinogens. I'm Huffing for the Post. Check out my latest piece for The Huffington Post at:
http://www.huffingtonpost.com/hillary-st-pierre/health-reform-opponents-t_b_826011.html

But this isn't why I've been quiet.

After almost five years of treatment, I'm still a cheap date. The 0.5 mg of Xanax I had to take at 6:15 yesterday morning so my brown fat didn't interfere with the results of my PET scan knocked me into Weds. am, literally.

I woke up just enough to get food, drinks, medications, or go to the bathroom. Beyond any of those activities, I was sleeping. I did manage to watch some teen jeopardy with Xander for a while, but that's the only bonding time we've had.

Now, for the official announcement, Hillary's internal pity party is over! Absolutely over. In The Anticancer, one study of mice showed those that feel helpless and have no hope of overcoming this helplessness have higher death rates from the same amount of injected cancer as mice that can overcome a helpless obstacle or have no obstacle to overcome.

In fact, the mice that overcome the seemingly impossible obstacle have higher cure rates than all groups.
Hoo-ra! I know which group I want in on.
That's why I'm advocating. That is why I'm writing. That's why I'm selling jewelry. I'm doing everything I can to feel powerful over my circumstances. I want to feel powerful over my disease.

I have an appointment with Dr. G on Friday and a pending appointment with Dr. Alyea in Boston on Monday. I'm hoping I won't have to go to Boston Monday, but we'll see what life brings.

Thanks for all the love and support. I'm off to do some school vacation bonding with X.

Adventures in Alternatives

"Knock Hard, Life is Deaf" -Unknown

After a fabulous, but long and nap-less, family day filled with basketball (of course), emergency shoe shopping (for X), video games, and movies, at 7 pm I felt like someone hit me with a ton of bricks.
My head suddenly started to ache. I started getting irritated with EVERYTHING.
I know this point. I've been there many times before. Nothing good can happen after I hit this proverbial wall.
I told the family what had happened, shut the door to the bedroom, crawled into bed with my meds as normal, turned on the tv and began choosing between 60 min. and dateline.
Yeah, this is how much fun I am on a Sunday night.
But then, whoa, it felt like lighting struck, Suzanne Summers was on Dateline talking about her controversial book, "Knock-Out: Doctors That are Curing Cancer."
This was too much to be a coincidence. My body had shut down sending me to bed at the exact time this news program about alternatives came on.
Interesting.
I have researched alternatives to chemotherapy and traditional American treatment across the world from NYC to Germany to India with success.
In the April of 2008, while in NY to see a Dr. at Memorial Sloan and Kettering for a second opinion on transplantation, I saw a Dr. in New Rochelle, NY who recommended a series of supplements from Germany.
I'd had a PET scan immediately prior to this visit.
In May I decided to undergo treatment at Dana Farber in Boston using a trial drug to prepare for my mini-allo transplant.
My Following PET scan showed my tumor had "spontaneously regressed" to the point I almost did not qualify for the treatment study.
By late June, with no other treatment, the supplements worked! I was nearly cancer free! I had 1 tumor less than an inch in diameter.
But what did I do?
I stopped so as not to interfere with the trial and took the traditional route. My cancer returned while receiving my transplant.
That is one feisty cancer to return during active treatment with a transplant!
Thank goodness I'm feistier.
Now, again, at a crossroads, it's time to consider alternatives at the very least, alongside traditional treatment.
You'd be surprised the support this is gaining from the main stream. The choice does not have to be either or but a safe combination.
The study of Psychonueroimmunology has only been identified within the past 20 years. As part of medicines' progress, many are recognizing treatment must treat the patient as a whole, even as an individual whole with customized therapy, such as a vaccine, and not solely as a disease.
Dana Farber in Boston has embraced proven alternative methods and provides them for a small fee at The Zakim Center.
These proven methods include, but are not limited to, nutrition counseling, massage, and accupuncture.
Norris Cotton at Dartmouth also has embraced some alternatives, such as Reiki, massage, music, and art. All of these are made available to patients during treatment at the center or as an in-patient.
What has yet to happen; however, is the cross-over where physicians and NPs recommend supplementation.
This is where I am.
Previously, I was ready to head to Germany to The Klinik Im Alpenpak to see a Dr. Ursula Jacob. She was recommended by the same MD that prescribed my tumor shrinking alternatives.
Dr. Jacob also became famous as the foreign Doctor who treated Farrah Fawcette.
There I could receive a cancer vaccine customized specifically to me and my disease. This treatment is only in the study phase in America.
I could also undergo hyperthermic radiation, which is also being studied in the United States.
These are not "alternatives" in other countries. These are treatments that have not yet made it to the United States.
I chose not to due to several factors, among them being leaving my family without promised success and the issue of cost.
Now I've studied American alternative Doctor's for years.
Dr. Rodriguez, who was featured in Suzane's book and on Dateline last night, is a name that has come up often.
He's been recommended to me by the same friend who recommended the Doctor in New Rochelle and Dr. Jacob in Germany.
As a personal fit, I don't think he is for me.
I'm more interested in Dr. Ralph Moss.
I've watched Dr. Moss for years after he was recommended by physician friend's "in-the-know" in Manhattan.
He travels frequently searching worldwide for the best, evidence based treatments. He writes a free newsletter and blog. He charges $300 for the purchase of a comprehensive alternative manual specific to the patients disease prior to any discussion, which at first I found immoral and disturbing, but now I find is a very reasonable price.
One Dr. featured last night costs $15,000-20,000 to walk into the door of his clinic in Texas.
Even Sloan and Kettering requires proof of the ability to pay or payment before a consult.
I found this out the hard way, by misplacing my wallet on the day of my consult which had my ID and insurance cards. I was treated like I'd broken into the hospital. The registrar was the security guard, trying to force me to put $800 on my credit card, which made me cry.
How can I be so sick I have to travel 400 miles to see a doctor only to be turned away due to lack of upfront payment?
Ironically, upfront payment was an example the Director of Sloan and Kettering used to discredit alternative Doctors even though it's commonly practiced at their own hospital.
Anyway, I'm adding folic acid back to my regimen which is proven at 1000mg daily to improve RBC health. I'm digging out the meds that originally regressed my tumor, and hopefully, I'll be purchasing that Moss Report. . . . . sometime.
Today I have to get my Kineret again for $150.
 Remember everybody, my jewelry sales go to a good cause: my health care. Feel free to purchase and donate whatever you feel necessary. My goal is $300 to get in the door.

Cancer My Treatment

Studies have shown that in situations like mine, where cancer is likely to reoccur indefinately, that chemotherapy doesn't extend life. What it does is improve the quality of life as reported by the patient. So, don't be alarmed, my chemo Thurs. Was canceled, or even better, cancered. I'll be getting a PET scan Tues. To evaluate how effective treatment has been since the dose I'm getting is so little and it's making me so sick. Clearly, Treatment has not gone according to plan and That's the understatement of my lifetime. Anna NP dropped Dr. marc's bombshell. Apparently, they remember "eekey, freaky, and Joe," my 3 visible abdominal tumors. NNow that I'm over the shock, I agree it's time for a re-eval. I was going to complain of stabbing pain where they used to be, increased right flank pain, again where a tumor is known to be, and constant nausea. I've also been fatigued but didn't know if it was the chemo, pred. Taper, or me doing too much. It could be cancer fatigue. I could close my eyes and sleep anytime. Even with pred or ritalin, I can sleep within an hour. So treatment was cancered and I can't complain. I'm going to keep having fun with family and friends.

Long Term Steroids: A Choice Between Bad and Worse

I never wanted to accept long term metabolic steroids as treatment.
Steroids scare me.

I have a new problem Doc,
I haven't stopped bouncing since starting steroids.

These medications, such as prednisone and dexamethasone, come with too many side effects. 
The superficial side effects are a moon face, weight gain, fat hump, hirsutism or extreme hair growth.
 And these are only the effects you see.
The internal effects are much scarier.
The most common short-term effects are a wired, anxious feeling, like an adrenaline rush, difficulty sleeping, increased appetite with indigestion and sweating.
Also, just like those nasty anabolic steroids the athletes take, there are mood changes, wild, uncontrollable mood swings.

Me, prior to prednisone therapy.

Long term side effects tear apart your body: osteoporosis, increase risk of fracture, loss of muscle mass, adrenal gland failure, cataracts, immunosuppression, electrolyte imbalances, to cardiac arrest.
Basically, long term steroid use can cause anything up to and including death.
I can't count the number of stories I've heard from people who have been eating and broken teeth or were walking and fractured an ankle. 
Jon's achilles' tear last year could be attributed to his previous steroid use for Crohn's disease.

Me, ten months after starting treatment with prednisone.
Thank goodness I'm married. Here I am dancing with Jon.

But this isn't why I was so adamantly against adding them to my treatment.

I most specifically feared for the condition in the body steroids create which suppress my graft vs. host disease and remove any internal protection I had from my cancer.
Choosing steroids was choosing to allow my cancer to reoccur.
 Long term steroid treatment also often disqualifies you, as a patient, from many foreign treatments. 
Even Farrah Fawcette was told she destroyed her chances of survival by the Klinik Im Alpenpak after she chose this American route.
I know, I was hoping to be treated at the same clinic by the same Doctor. I was medically accepted and ready to travel for hyperthermic radiation.
Instead, I had to make a decision between bad and worse.
So here is the million dollar question: why, knowing all these facts, did I accept steroids as treatment?
I accepted because it was the treatment I could afford. 
It was when I made this decision that I knew I'd numbered my days. I knew I was choosing comfort over cure. 
Steroids have their benefits. They give you energy when you have none. They allow you to eat. They give the perception of being "normal." They decrease inflammation and assisted in alleviating my lung problems, but it's not a cure. 
Also, the side effects themselves are incredibly uncomfortable.
I made my decision because it was the cheapest and most convenient. It would not bankrupt my family and put us in dire financial straights like running to Boston or New York. It absolutely was less expensive than seeking a cure in Germany (my first choice) or India.
I'd decided I would not leverage my families' future when my survival wasn't guaranteed. 
And to this day I come to tears when I think about it. It's my biggest "what if?"



No one should ever have to choose between their life and the security of their family, but I did.  

Changes

I've been paying close attention to healthcare legislation, but I've quieted my fight.

 I can't battle my cancer, my bills, and for political reform.

 I was taking the rulings too personally.

 I've been having anxiety attacks thinking about impending bankruptcies and wondering how anybody could see a person in my position and refuse to help. 

HB89, which directs the Attorney General to join the lawsuit against the Affordable Care Act, passed in the House despite NH's Attorney General testifying regarding the unconstitutionality of HB 89 itself.
HB440, repealing the state high risk insurance pool, also passed in the House Committee

Even the cigarette tax, which has been used to fund the catastrophic illness program in NH and is proven to cut smoking rates, is up for repeal. 

Why?

It breaks my heart. 

So many people are praying for me, praying for my survival, giving me graces to ask and receive what my heart desires, but I find it impossible to pray to be cured. 

It seems to selfish to ask for myself when what I want most is for no one to ever have to suffer the way I have.

Stages of Change

And That's what I'll continue to ask for, especially next Tuesday when there will be far more bills being heard.

 If anybody has a story they would like to share, a testimony they would like to write please contact NH Voices For Health or Working Families' Win.

I will not be able to attend next Tuesday's hearings.

I will be undergoing a PET scan to re-evaluate to status of my disease. 

Yes, my treatment schedule has been changed, again. 

I'm in for some big changes. 

You learn something new. . .

You learn something new everyday (at least I try), and you never know where that jewel of information may come from. 

Most often, it's from the least expected place. 

Selling jewelry at pink pint night Tues., I was chatting with Faith, a friend and founder of The Monadnock Women's Network (MOWO), a non-profit organization created to empower women in achieving their goals by partnering with other members of the local business community and non-profit organizations. 

FYI- I love this foundation. Take the time to check it out: http://www.monadnockwomen.com/

We were talking when she said, "Can I ask you a personal question?"

"Of course," I thought, "That's what I'm all about." 

Then, to my surprise, she asked if I was taking prednisone.

This has been me when spending the night
at a friend's home.

"Yes!" I wanted to scream. She could tell. She knew my face was swollen and my hairy jaw was a side effect! 

I was so relieved that she could identify that I was a steroid induced crazy woman, not my normal self.

Faith then proceeded to explain to me that L-glutamine helps stimulate adrenal function and that with a prednisone taper an L-glutamine supplement should be increased. 

Whoa, what a Godsend of information. I've been taking steroids since Dec. 2009. 

My hope of getting off was squashed when my adrenal glands failed to function, giving me Addison's disease, when I'd gotten to taking only 5mg. 

That diagnosis sent me straight back to 20mg a day. 

My illness last week had my team clamoring to jump me back up to 17mg, but I'm on 15mg now.

Steroids are a double edged sword. They make you feel better. They give you energy by stimulating your adrenals giving you the constant "fight or flight" feeling.

It is great to be energized and productive.

However, it causes muscle wasting, severe weight gain (50lbs. and counting), osteoporosis, and as a personal side effect for me, the return of shortness of breath with an increase dose.

The last symptom is counterintuitive. I think this happens because my lungs have received all the possible benefit from steroids and I now use exercise to maintain their function. The steroids causing muscle wasting affects how my body is using the oxygen, making me short of breath, theoretically.

Are we all following? It's ok if you're not.

Sometimes, I can't follow myself. That's the prednisone too.

 At least now, there's the possibility of help. Wish I'd hear of this before. I'll do my research, but today, I'm off to treatment.

It's fight time.