Living with Cushings Disease

I debated on whether or not to post publicly about this or not, but I don’t think I can keep quiet much longer.  Besides, this is my blog on which I air my frustrations, so if you don’t want to read it, I guess just…don’t.

The recovery from this disease is ridiculously hard, but it isn’t the worst thing that happens.  One of the hardest things I’ve found out in the past year of my life is who my true friends are.  Some of them have been better at hiding their true character from me for a while, but in the past month I’ve been able to step away and re-evaluate.  The results have kind of gutted me.

When I first found out I had the disease, the support was overwhelming.  I just knew for sure I was going to be able to make it through with no problem because of the support that I had and how many people loved me.  It’s been a year since my diagnosis now and man alive do things look a whole lot clearer on the other side.

People that claimed they would be friends forever are anything but.  Folks (church, job, close friends, acquaintances, family) that promised to be there and pledged their support have disappointed me beyond belief.  Some old friends that I’ve cut out didn’t understand my condition even though they claimed to love me and talked crap about me when I didn’t feel well and couldn’t plaster a smile on my face all of the time, even though I tried.  People that I thought would be there forever, and upon whom I bestowed a lot of trust, have sorely disappointed me, especially in the past month or so.

I wonder how many friends I will lose to this disease.  How many jobs I won’t get because of it.  How many opportunities may pass me by because of it.  I know what the wise people will say.  If they’re not here for you now, then they weren’t friends in the first place. You can always get another job. Maybe those weren’t the right opportunities. I hear you.  I do.

But I’m still mad.  I’m still frustrated.  And I hope those of you that read this will be able to know exactly what I mean.  You should know if you’ve been a true friend, or a fair weather friend, or not even a friend at all.  Some of you I’m really disgusted with right now.  Maybe I’ll speak to you again, but the chances of that are looking pretty slim.

I know this sounds hateful, but I can’t hold it back any longer.   To those of you (and you KNOW who you are) who have continued to support me and continued to encourage me and love me despite all of this, thank you.  I love you and I hope I can repay you for all that you have done for me and all the love you have given to me.  I hope that I can be as good of a friend to you as you have been to me.  Rest assured that it’s not you of whom I speak.

But if you’re reading this and have any doubt at all in your mind where you stand, then you have your answer.

It’s been a long time since I posted anything, I know, but things have been more than a little bit bumpy these days.  I guess the biggest news is that I lost my job.  I’ll go with the safe, politically correct and lawsuit-free answer and say that I’m just thankful I had the job this long.  I won’t say more than that because legally I can’t, but I know it will work out for the best in the long run.

I’ve also moved, which is working out quite nicely.  It’s just me and my cat, Fin, and I get to hang out with him all day long (he’s snuggling beside me as I write this) and cook massive meals for my friends.  I like it a lot.  I didn’t enjoy the upheaval of losing my job before I moved, but hey.  C’est la vie, right?

The good news is that I’ve already interviewed a couple of places and things are very promising. Plus, I get COBRA from my former employer for several months, so I won’t have to worry about all the medical drama-rama that is rearing its ugly head again.

Yes, you read that right.  I just found out via a message from my doctor that I am to stop the prednisone.  Yay, yay, yay for now, but I have a gut feeling that all is not well.

My symptoms started coming back a couple of months ago, so I talked to my doctor about it.  The nonstop periods are back again and so is the hair growth on my face and arms.  The migraines are back as well.  I’m losing hair, too, in clumps every morning.  I haven’t started gaining weight, but I’ve stopped losing.  The last thing to happen to me was the weight gain, so I’m just kind of sitting tight and waiting for me to start looking like I ate myself for dinner again.

My doctor has promised me that it won’t go that far again.  Now that they know for certain that I have Cushings, they know what the symptoms are and can quickly rule out any other cause.  I had a cortisol stimulation test this morning at Vanderbilt.  I stopped taking the Prednisone over a month ago, preparing to have this test the week after my birthday. But seeing as I was let go from my job two days before my birthday, that didn’t exactly happen, losing my benefits and all.  So I had to push it back almost a month but finally took it this morning.

For anyone that’s curious, they take a blood sample to test my blood cortisol levels.  Then they inject me with synthetic ACTH, which is the chemical by pituitary gland secretes that stimulates my adrenal glands to produce cortisol.  I wait patiently and listen to my iPod and read a book for about 45 minutes or so, before they come back in and take another sample of my blood to see how my adrenal glands reacted to the ACTH.  If they reacted normally and secreted cortisol, that means that I can stop taking my prednisone.  If they don’t, it means I’m still adrenal insufficient and have to stay on my meds.

The other reason for taking this test was to make sure my adrenal glands are functioning normally.  The tumor can’t possibly be back if I’m still adrenal insufficient.  I’m obviously no longer adrenal insufficient, so let’s strap ourselves in for yet another bumpy ride.

I go back in four weeks for another urine free cortisol test.  It was “normal” when I took it four weeks ago, but my cortisol HAD doubled from my first visit post-surgery to the date of that appointment.  If it has increased even more since then, I’ll be doing urine-free cortisol tests (i.e.:  pee in a really big jug all day long) on a regular basis until they can catch my first irregular reading.

My doctor also told me last visit that if a recurrence of Cushings is going to happen post-surgery, it will happen within the first 18 month window.  I’m 9 months post-op, so guess what that means?  I’m a prime target.

I knew all of this when I went in, but I’m just ready to get the sucker pulled out of my head so I can move on with my life.

Anyway.  That’s it for now.  I’ll keep everyone updated.  Sorry for the lack of updates.  I haven’t been my usual peppy self and haven’t much felt like writing, but I’m trying to hop back on the horse and go at it again.

My apologies for the lack of updates.   I’ve had perhaps one of the most emotionally upheaving and stressful months of my life.  I suppose it’s all working out for the best, but man alive.

I guess the biggest thing that happened is that my grandmother died unexpectedly.  And only a month to the day after I posted my last blog.  I’m glad that we shared the kind of relationship where she would call me sporadically just to say hello and cheer me up.  I’m glad I have last memories of her but man do they make me sad.  She was only 67 years old and she had a cold.  She wasn’t supposed to die yet.  I’ve been having a really tough time but I’ve been trying to keep it together for my family…my Mom especially.  Plus, I’m sure most people don’t want to hear me constantly talk about it because they don’t know what to do to help, so I’ve just been sticking to myself.

Which has caused a lot of problems in and of itself.  People just don’t know what to do with me anymore.  Honestly, most of the time I don’t even know what to do with myself.  If I open up about how much I hurt all of the time, people aren’t going to talk to me because then I’m a complainer and a whiner.  If I keep quiet and stick to myself so I don’t complain all of the time, I’m a loner in a bad mood.  I can’t really win for losing right now.  The doctors don’t tell you that after surgery, most of the people you love will run screaming for the hills, too.

I know that’s not true, not completely.  I know the  people that count are still here, sticking it through to the end with me and I appreciate it more than any of them will ever know.

Just a lot of upheaval in the friend department right now on top of all of the other upheaval and it’s just making me nuts pretty much.

It has instilled a big fear in me, though.  That Iwill lose all of my friends due to this disease.  That people are just going to give up on me.  I hate feeling that way.  If you are reading this and are one of my close friends, please don’t give up on me.  I’m not even halfway out of the woods yet and I’ve still got a long road and I need you guys.  I won’t always be in the best mood and laughing.  I try, I really do, but I just can’t always be that person.  I won’t always be feeling 100% and most of the time, I won’t be able to do everything I want to do.  I may have to take a lot of naps; I may walk a little slower.  I may get sick more often than not.  It’s all part of my recovery and I hope you all know that I am trying my hardest to feel better.  But I hope you all also know how much I’m sheltering you all from how I really feel most of the time.  For those of you that do understand and are patient with me, thank you.  It means the world.  It really does.

I guess the other thing that I really need to ask for patience with is the grief from my grandmother’s death.  I’m really sad, guys, and I haven’t been this way in a long, long, long time.  I’m not quite sure how to deal with it.  I know I’m not the first person to lose someone close to me and I know I won’t be the last.  I know that death is a part of life.  And unfortunately, this isn’t the first death of someone close to me that I’ve experienced.  So I know the motions, I know what all I have to go through…but yet, somehow this one seems so much tougher than the rest.  I hate being sad and mopey but I really can’t help it right now.  So please just bear with me for a little bit.  That’s all I ask.

I go back to the doctor in just a couple of weeks.  Two weeks from tomorrow actually.  I think on Thursday I’m going in for pre-appointment blood work.  I’m having a few issues again…hair growth, mood swings, tiredness, soreness, migraines and period problems.  Weight is still holding steady (I’m not gaining again) but that could change.  I have no idea what to think.   I’m trying not to think anything until the 19th when I talk to Dr. Lakhani and discuss everything with him in detail.  So we’ll see what happens.

The month ended on an upswing, though.  I did get to go on vacation to New York City and see one of my favorite places in the world with some of my favorite people in the world.  Though I wasn’t feeling 100% the entire time, it was still nice being there and it was a good end to a really hard month.

This is a little bit of a “sniffling” emotional blog, but I can’t help it.  I’m just so very blessed to have my friends and family in my life and I just feel the need to get it all out.  So here it goes.

A friend of mine from church died suddenly over the weekend and while I’m grieving his passing along with the rest of my church family, I’m also blessed. Blessed to have known such a warm, kind-hearted, Christian man. Blessed to have called him a friend.  And just blessed to know him.  His purpose was done and God called him home.  I know he’s happy and rejoicing right now and I know we will all feel grief for some time.  But I know that we are all blessed by knowing that Troy is happy right now.  

I’m blessed to have such an amazing network of friends.  Friends from other states, from other countries.  I just can’t even begin to express the love I have for everyone in my life.  I can’t put it into words.  Some people are those I haven’t seen in years (Phil, Naho) and others I saw just a few minutes ago (Catherine) or a few hours ago (Heather).   Some I have never met in person and some I am extremely attached to, no matter how far away we are from one another (Kristina).  Some I met through work associations, some I met through church, some I’ve kept for years and years and have no intention of ever letting go (April).  I can’t name all of you, I know, or I’ll be here forever. But just know that I really do love all of you – immensely – and I’m so glad that I know each and every one of you.

My grandmother made me smile today.  Just hearing her voice on the phone made me want to cry.  I can’t wait to see them this weekend, as well as the rest of my family in Ohio.  I am so blessed to still have them in my life and to still have both of my parents, who love me and support me so very much.  I’m blessed to have all of my nieces and nephews (even those that are not blood-related but I still love as my own).   I am blessed to have such a good job with great benefits. 

I’m just blessed.  Blessed beyond all sense of earthly reason.  And I just had to put it out there.  I love you all dearly.

Perhaps one of the most frustrating things about this disease is having to “self-diagnose.”  I know my doctors mean well and I know they are trying, but I am so completely frustrated and angry right now.

I’m feeling the symptoms again (muscle fatigue, upset tummy, diarrhea) that I felt for weeks before the crisis occurred. 

And that night…the infamous “kidney stone night…” I called the on-call endocrinologist at 1 in the morning thinking I was having an “addisonian crisis” or “adrenal crisis.”  Adrenal crisis is easier to type, so I’ll use that term.  They kind of dismissed it, even though I had my laptop open and was reading the symptoms of an adrenal crisis and convinced that’s what I had.

My Mom came and took me to the Vanderbilt ER at 2:30 in the morning, and the doctors (once I was able to receive treatment, that is, even after I told them I was potentially having an Addisonian crisis) were confused by the abdominal pain I was experiencing.  Eventually they found kidney stones, and sure enough those suckers started moving, so it was “Voila!  It’s kidney stones.”  It was still weird how they presented themselves, but I digress.

So, the diarrhea and all of that goes away, probably because of the stress doses of hydrocortisone I received in the hospital, and the elevated dose I continued as I “tapered down” to my daily level.  They eventually got the kidney stones out and I felt good for a while.

And then this weekend…the tummy troubles start again, full force.  My stomach hurts the instant I eat anything, and I’m rarely hungry (that’s been a given the past few months anyway).  I have to remind myself to eat.  Also, my legs and hips started hurting again this weekend, and my roommate took notice of it, too.  That I was walking slower, that I looked a bit more sluggish, and that my stomach problems were back.

So I “hemmed and hawed” over it yesterday and then decided a little self-diagnosis was yet again in order.  Thanks to the Pituitary Network website, I combed through a detailed analysis of secondary adrenal insufficiency, caused by pituitary Cushings.  In plain English, the exact crap I have. 

And…LO AND BEHOLD…if I don’t read this:  “Because the symptoms progress slowly, they are usually ignored until a stressful event like an illness or an accident causes them to become worse…in about 25% of patients, symptoms first appear during an addisonian crisis.  Symptoms of an addisonian crisis include SUDDEN PENETRATING PAIN IN THE LOWER BACK, ABDOMEN, OR LEGS; SEVERE VOMITING AND DIARRHEA, followed by dehydration, low blood pressure and loss of consciousness.  LEFT UNTREATED, an addisonian crisis can be FATAL.”

So I sit here, writing this blog, gobsmacked AND HACKED OFF AS ALL HELL. I called my doctor’s office last week to alert them that the symptoms are still there, and that I should probably see my doctor before August, when I’m next scheduled to see him.  I still haven’t heard back, and I called again this morning.   It’s ridiculous.

I’m like a ticking time bomb.  Am I going to have to become comatose before someone listens to me?  I know I don’t have a fancy M.D. and I know I’m just a paralegal.  But I also know my own body and I know when something is wrong.  That has been my life for so many years. 

So, yes.  I’m sitting here, perhaps on the verge of yet another adrenal crisis, and no one cares.  I’m going to purchase a flashing neon sign that says “TIME BOMB!” and wear it above my head, so everyone knows I’m about to explode with some rare freaking disease that no one has heard of and no one can understand.

C’est la vie?  Seems unfair to me.  Oh, well.  We’ll see if they call before I wind up with more medical bills and more unnecessary medical drama.  In the meantime, I’ve printed out the information for my closest co-workers and roommate so they’ll know when my body is trying to go kaput.

Well, I had another bad day yesterday.  One of those “woe is me” moments where I felt like I couldn’t take it anymore.  Several things happened to hurry that mindset along, but I allowed myself to wallow, rather than just letting it roll off my shoulders.  I can’t do that anymore, given the precarious nature of my health, so it wasn’t a good thing yesterday.   I even uttered the words “I just can’t do this anymore,” which is very unlike me.  Needless to say, it was a very bad day indeed.

That sulky mood continued through the night and on into this morning, and I felt the familiar stirrings of yet another kidney stone.  It’s a pain you identify quickly once you’ve had them.  And it completely freaks you out when you feel it happening again.  I just kept thinking the entire time I was showering this morning, “Why me? Why me? Not again!  Not again!  I can’t do this again!”

I had a rather emotional conversation with my mother on the way into work.  I tend to hold things back, especially when it comes to my health, because I have a hard time explaining it in such a way that anyone understands.  There are people at work who certainly do not understand, and their poor attitudes towards me are not helping.  I’m doing my best to insulate myself from them, but I know it will take some time.  I guess I also tend to not even tell my closest friends how I’m really feeling, too scared of becoming one of “those people” who complain all of the time. 

I did have brain surgery, but I’m not lacking in intelligence.  I know that I should be grateful for everything.  I know that I should count my blessings and I know that I am a very blessed person.  I have no problem seeing that.  I know that this disease is rare and that my doctors are working with me to make sure my life is as problem-free as possible.  I know they are still learning how to treat me themselves and I know I present a very difficult case.   

So that’s not my problem.  My problem is that sometimes I just feel so frustrated and exhausted.  For the most part, I am a very optimistic person. But when I get down, man alive do I get down.  I mean…I do it in style. 

So that is what happened yesterday.  I let it all get to me and had a momentary lapse of judgment and allowed myself the pity party that I shouldn’t have entertained.  All it did was put me in a bad sort this morning, so what good effect did it really have?  None. 

However, God does answer prayers, even if you don’t mean to pray.  My little dramatic stunt yesterday afternoon (“I just can’t take this anymore!!!!”) complete with the tears, exaggerated hand motions and pained facial expressions was really just a prayer in disguise, though I didn’t understand it at the time.  God made me.  He knows I have a penchant for dramatic flair.   I always have.  Grandma Suzie did always want me to be an actress…

Anyway.  God thoroughly enjoyed my little show and gave me a standing ovation and then said “Okay.  Now that we’re over the dramatics.  Are you ready to listen?”  And He gave me his answer. 

We have a daily “pep talk” of sorts at work every day.  Today’s topic brought tears to my eyes as I quickly realized that God was speaking to me in that moment.  The topic was “If you want the rainbow, you’ve got to stand the rain.”  That shut me up right there.  But the discussion continued on adversity and how to make the most of it.  You have a choice.  You can either bellyache and wine and “why me?!?!?” or you can forge on ahead, regardless of your circumstances. 

They listed several famous people who became famous (rightfully so) after facing adversity in their life.  Such as Beethoven, who composed some of his greatest works after he became deaf.  Or Thomas Edison, one of the greatest inventors in history, who had an IQ of less than 100, was nearly deaf and almost died from scarlet fever.   We consider Abraham Lincoln to be one of the greatest U.S. presidents, and he did so only after dropping out of grade school, going broke, losing a son at a young age and running for political office and failing four times before finally winning a bid in the Illinois Senate.  They also mentioned the struggles of Christopher Columbus (ever heard of him?) and Carol Burnett, who also overcame great adversity and succeeded.   They asked the blunt question, “What stands in your way of success?  Do you forge ahead or do you let it hold you back?”  I answered honestly that I allow myself a temporary pity party and then forge right on ahead.  Someone else offered up the wise adage “Steel is made from the hottest fire.” 

The quote of the day is one I didn’t take lightly.  “Good timber does not grow with ease; the stronger the wind, the stronger the tree.”  – J. Willard Marriott, founder of Marriott Hotels. 

Okay, okay, okay, okay God.  I got it.  I also received another wonderful email right after that from my father called “God Said No.”  I’m sure it’s floating around on the internet and you can look it up.  But it also gave me another heaping dose of perspective, most namely the following:

“I asked God to give me happiness.  God said ‘No, I give you blessings.  Happiness is up to you.”

“I asked God to spare me pain.  God said ‘No, suffering draws you apart from worldly cares and brings you closer to me.”

“I asked God for all things so that I might enjoy life.  God said ’No, I give you life so that you may enjoy all things.”  

So yes, I heard.  Actually…I heard him say “HEY!  You!  Will you friggin’ listen to me?!?!”  in a Godfather accent, but yes, I heard.  I think God’s a fan of the Godfather accent.  People do listen when he sounds like James Earl Jones or Marlon Brando.  They really do! 

Anyway.  I’m at peace again.  A brief lapse to be sure, but I’m once again at peace.  My response will be to just forge on, count my blessings and praise God for all that I do have and not bellyache about the things that I do not have.  He’s got this.  He reminded me today.

It’s been five months to the day since my pituitary surgery.  It’s been a llllooooonnngggg road so far but I wouldn’t change it for the world.  Hopefully I’m getting all of the bad stuff out of the way so I can have a great life for the remainder of it.  To date, I’ve lost between 23-25 pounds (depending on the day).  My face is MUCH tinier, as is my abdomen.  I’m starting to feel more in control of myself.  My “tatonka” hump is still there, and I can’t really tell if it’s shrinking or not.  Thank goodness I have long hair.  And yes, if you are wondering, I have to laugh at myself in order to get through this, so my roommate named me “tatonka” after the Sioux word for “buffalo.”   Graham Green-Dances-With-Wolves style. “Tatonka. Oichi.”  Maybe a little crude, but it lightens my mood when I start getting down.  But no one else is allowed to call me that. That is reserved for my angel of a roommate only!

I’ve had my down moments and I don’t think I could battle Cushings again if it returned.  But then again, I never thought I would make it through half of the stuff I’ve encountered so far.  I guess you find strength when you need it.  My spirits are high, though.  I do feel somewhat “normal” again, and I hope I continue to feel that way.  I’m still battling steroid withdrawal and I’m not very hopeful that my pituitary gland will ever start acting on its own again.  I am on 5mg of Prednisone per day, and according to reports I’ve heard, I should be glad I’m on Prednisone and not hydrocortisone.  So good to know.

Also, my kidney stone removal was finally successful.  Hoss is no mas.  My urologist removed Hoss and another small stone that was hanging out in my right kidney.  He didn’t disturb Bonnie and Clyde, though (the ones in my left kidney).  He said my kidney wasn’t pissed off at them yet and to leave him clueless.  He said if he went up there and tried to get them, it’d be like stirring a hornet’s nest.  After walking around with a stent in my urethra for 3.5 weeks, all Iwanted was relief.  So we annilhated Hoss.

My employer has been absolutely wonderful throughout this entire ordeal.  I am really blessed to be at such a great place.  I love my job and I love most (actually, almost all) the people with whom I work.  There are always a few bad seeds, but that’s going to happen in every job.  The kidney stones were a result of too much stress, and I had been warned about my stress levels prior to throwing them.  Lesson learned.  I am making a few adjustments to insulate myself from stressful situations and people, and just taking the steps to do that has eliminated a lot of my stress.

Throw three kidney stones…receive a backbone.

Anyway.   Thanks for all of the kind wishes and thoughts and encouragement along the way.  It does not go unnoticed or unappreciated.  I don’t really know the proper way to express my gratitude but I hope I can repay you all in some form.  Or at least “pay it forward.”

Rachel here, reporting from the comfy confines of her bedroom here in the United States of America.  My kidney stone removal surgery is scheduled for this Wednesday and I still have a very stubborn strain of bacteria hellbent on causing my kidney grief.  So, I’m taking a very strong antibiotic and being completely upright for more than just a couple of minutes causes uncontrollable nausea.

In other words, I’m terribly bored and doing many odd things to pass the time.  I read a lot of news articles.  It’s the same old stuff with different headlines and characters every day so it doesn’t do much to cure my boredom.  My Netflix subscription is keeping me somewhat occupied, thank goodness.  Though I do tend to fly through my three-movie-at-a-time allowance rather quickly, and then become quickly bored like I am right now, waiting for my next three movies to arrive.  What takes the postman so long?  Doesn’t he know I’m bored?

I watched a Swedish vampire movie last night.  It wasn’t very smart.   The painkillers I take for the above-mentioned nasty kidney infection already afford me very vivid dreams, enhanced by my already vivid imagination.  So when you watch a VERY scary vampire movie in a foreign language at one in the morning, your dreams are bound to be interesting.

Last night I dreamed that my pastor at church was a Swedish vampire.  Yes.  And so was Robert Pattinson.  I’m not sure why he was in my dream, but at least it wasn’t a dream about Dustin Hoffman this time.   That’s a long story I’ll save for another time.   But yes.  Robert Pattinson speaks fluent Swedish – and he can be a VERY convincing terrible vampire, too.  First time I was ever scared of the poor chap.  My roommate always dreams about yummy men like Clive Owen and Jason Statham, and I’m usually subjected to dreams about Dustin Hoffman.   And I’ve been complaining about my desire to have sexy dreams about British actors for a while now.  Just be careful for what you wish.  My wish was finally granted last night, but in the form of Robert Pattinson, covered in blood, screaming in Swedish and saying something about “Puss puss infart speed snart” and crap like that.  And then my pastor showed up and wearing a viking hat…I guess because I went to church last night.  And she was speaking in fluent Swedish, too!  I didn’t even know that I knew Swedish.   Thanks, Kristina.

So it wasn’t exactly what I had envisioned when making my wish.  I guess I should have been more specific.

So yes.  Back to the boredom.  I’ve been Googling U.S. jobs in Europe just to entertain myself.  I found several interesting ones.  I even entertained applying for the electrician job on the Isle of Guernsey.  But then my fantastic imagination flared and I imagined by sore skills in anything dealing with any sort of wire-y thing would result in utter catastrophe.

“In a weird twist of fate…the Isle of Guernsey completely erupted into flames today.  The once heavily populated and wildly thriving Guernsey breed of cattle has now regretfully, and astonishingly, been placed on the World Wildlife Fund’s Extinct Species list.

“However, the still maddeningly unconfounded fear of mad cow disease has completely been eliminated throughout the world and the person responsible for the charring of one of the United Kingdom’s most beloved territories, Rachel Ann Wilson, has been awarded a Congressional Medal of Honor from her native country, the United States of America, and a dinner with President Barack Obama and wildly popular actor, Robert Pattinson, who by the way, does not speak any Swedish, despite previous reports to the contrary.”

I really need these kidney stones out.

There’s not a lot to write about right now.  I’m still holding onto those kidney stone suckers.  I was doing fine for the most part, but they’re acting up again.  The infection is back and there’s a lot of blood in my urine again.  Fun stuff.  Surgery is scheduled for next Wednesday, May 13th (my brother’s birthday).  I hope it’s not delayed because of the new infection.  I really want these gone.

I went to the James Morrison show in Nashville last week and it was a blast.  Had the wonderful opportunity to meet him and he was super nice and charming.  We traded health horror stories and he renamed my kidney stones.  They are no longer “the triplets.”  They are now called the “nasty little $&@#ers.”   He felt that title was more adequate than “the triplets” and he dedicated his song “Nothing Ever Hurt Like You” to me.  A great experience.

I’m very frustrated, though.  Tired of hurting and fighting all of this stuff.  I guess I’m just having a down-and-out week for the most part.

I was able to travel over the weekend to my cousin’s wedding in Ohio.  I’m paying for it today but it was worth it.  I loved seeing all of my family from Michigan and Ohio.

The official weight loss is now 21 pounds.  24 by my count, but Vanderbilt weighed me this afternoon for my pre-op stuff and said 21 pounds.  I’ll take, either.  I’m proud of it.  I’ll own that number.

So anyway.  Not much to update right now.  Just the same old stuff.

I’ll write when I know more or have another update.