That won't be me...

Symptoms of Cortisol Withdrawl:

Abdominal pain, Confusion or coma, Darkening of the skin, Dehydration, Dizziness or light-headedness, Fatigue, Flank pain, Headache, High fever, Joint pain, Loss of appetite, Loss of consciousness, Low blood pressure, Nausea, Profound weakness, Rapid heart rate, Rapid respiratory rate (see tachypnea), Shaking chills, Skin rash or lesions, Slow, sluggish movement, Unintentional weight loss, Unusual and excessive sweating on face or palms, Vomiting

So I read a bunch of stuff before my surgery about how the withdrawl of Coritsol from my body, both from the adrenal removal and (hopefully) the cure of the Cushing's would be a long road.  There were all these side effects.  I'd be really sick, yadda yadda yadda right?  But the whole time I was thinking...

"That won't be me."

"I'm never sick."

"I'm not THAT sick right now so I'm sure it won't be that bad."  

"Not nearly as bad as all these horror stories you read online right???"

It's bad.  It's almost every single one of the things listed above.  Yesterday something happened that I don't think has ever happened in my adult life.  I couldn't get out of the bed.  I just laid there.  For hours.  In the dark.  I didn't even watch tv.  Finally mid-afternoon I moved to the couch.  Now luckily this adrenal "crash" that I experienced pretty much from Friday through yesterday I think was a direct result of them lowering the dose of my Hydrocortisone too quickly on Thursday.  So after a call to the doctor yesterday morning and upping the dose I was taking I'm back to feeling only "medium crappy" instead of like I was going to die.  (By the way I think I'm going to come up with a list of "how I feel" choices to pick from when people call or write and ask how I am.  Answers to chose from will include things like "Well I didn't hurt anyone today" and "I only felt like I was going to puke for 4 hours today, not all day.")

I don't say all this stuff for anyone to feel bad for me or anything but mostly for people who are Googling like I was and stumble upon this to see what it's really like.  It's odd too, the physical stuff is pretty bad but I will admit the mental stuff is a little scary.  I'm sort of in this daze.  Hard to focus, hard to get things accomplished, don't feel like talking out loud.  All of these things are so 180% away from my normal personality.  I think that was part of the whole staying in bed thing yesterday, not only did I feel horrible but I just sort of wanted to stay under the covers and make it all go away?

Wow-that was all kind of heavy and stuff-sorry about that...good news is I'm at work this morning.  Time to catch up on some things.  Apparently the people waiting to be paid don't really care about all the stuff mentioned above?  Go figure?  Bills are still due, payroll needs to be done, the mail piles up.  

Looks like this is going to be a one day at a time kind of thing.  LVP told me yesterday I wasn't Wonder Woman.  I was a little insulted...of course I am?  But maybe just not right now...  

Back to work...

So one week post surgery...how are things going?

Well to be honest, it's a little hard to say.  I'll start off by saying that the actual surgery was nothing like I expected and sort of kicked my butt.  I've had abdominal laparoscopic surgery in the past but this was nothing like that.  I knew they were going in through my side but it was kind of my side/back area and it left me all sore and bruised (big time.)  I guess when they move your organs around and stuff in there it can really mess you up.  Also apparently it took a lot longer than they thought.  About 4 hours instead of an hour and a half.  I still have some pretty significant back/side pain and it's just hard to get comfortable in any position.  

With some extra help last week from Dad and Mom and Leslie I was glad to be at home instead of the hospital and I'm trying to work my way back up to being able to do stuff (like putting on socks and drying myself after a shower-it's always the little things?)  I will say though that I actually feel worse than I did a couple days after surgery.  I'm not sure exactly why this is.  It could be the lack of Cortisol from the successful surgery (?) it could be the medication they are giving me to try to stimulate adrenal hormones.  Who knows.  Different websites and such warned that recovery would actually be worse than surgery due to the medications.  

So in the meantime I'm working mornings, resting in the afternoons and running out of programming on my DVR.  Hoping that in another day or so I feel like sitting up more so I can craft or scrapbook or something productive!  Lots of doctor's appointments in the next few days so maybe they will get all the meds straightened out and I'll start to feel a little better...

Thanks for all the notes and cards and such! (and thanks for not coming to the hospital!)   

Surgery Update! Woo Hoo!

Have you ever been excited about surgery?

Probably not.  But you know what?  I am!  I'm so ready to have this all over maybe.  Ok well the surgery isn't going to make everything perfect-I'm getting ahead of myself again....

So last we left our intrepid passenger (this would be me) I had a mass on the left adrenal, trying to get referrals for surgeons, additional tests etc.  After a day of serious merry-go-rounding, I finally happened upon the best surgeon for the job.  The downside?  He doesn't take insurance for his surgical fees-umm Houston we have a problem.  But the next best guy couldn't even see me for a consult for 6-8 weeks possibly.  Also a problem.  Apparently while adrenal removal isn't a complicated surgery it also isn't a common surgery.  The guy doing mine has done around 50, the #2 guy in the business had done 2, right 2.  Yikes!

So consultation went great yesterday and I really liked the surgeon ($$) and his staff.  Amazingly they were able to get me in at Northside Main for surgery next Wednesday morning the 1st.  I guess this is what happens when you are a hot shot, non-insurance taking surgeon?  The best thing about this is that Mom and Dad are going to already be in town on a planned trip to visit next week so I will have some help with everything.  Not that Leslie isn't a great helper, he is.  But this way he can focus on work and they can help me with anything I need.

Actual surgery isn't too bad, hopefully just one night in the hospital, some restrictions on activity for awhile but the key is the removal of the adrenal and how my body responds.   The surgeon explained it really well yesterday. He said...You have two adrenal glands, right above your kidneys.  Right now the one with the tumor is working 4x as hard as it should.  Pumping hormones to the pituitary gland in my brain.  My poor pituitary gland is saying "Stop please, don't send any more of this junk to me!" so in the meantime my healthy adrenal says-"Oh ok, I'll stop, sorry about that" while the left adrenal with the tumor (I should name it) keeps pumping away.  So once they remove the unhealthy adrenal it takes awhile for the sleepy one to wake up and do it's normal job.  (Like maybe 6-8 months, or more.)  During this time you need some drug therapy and replacement hormones and steroids to sort of get everything back in balance.

So there you have it!  Much much to get done in the next week to get ready, including pre-op today! (Yippee more needles!)  But really it is all ok and I'm so ready, well except for the actual getting ready to be down for the count for a little bit.  

So in closing, thanks for all the prayers and well wishes.  Also a note...please, please, PLEASE don't come to the hospital.  It's a pain in the neck down there, I really don't want to see anyone and I'd rather wait til I was home and feeling more like myself.  PLEASE, if you have family members who like to visit people in the hospital (you know who you are) please convince them to just wait til I am feeling more like myself at home.  Mom will report on me and I'll report in when I am feeling better and down one body part!     

"It's not a tuuuumor"-oh wait, maybe it is!

So I've been composing this post in my mind for a couple of weeks now and still can't figure out how to say exactly what I need to.

You know how in the move Kindergarten Cop when Arnold says he has a headache and the little kid says..."maybe it's a tumor?"  And Arnold (in his best Arnold voice) replies "It's not a tuuumor."

Well guess what-sometimes it IS a tumor.  But sometimes a tumor can be a good thing!  I think I need to back up, or start over or something.

Let's start at the very beginning (a very good place to start)-flat out I've just not been well.  If you see me on a regular basis or more likely if you have seen me recently but haven't seen me in awhile you will notice right away that something is going on.  I've put on a lot of weight, have a ruddish complexion and just overall my whole look and body has changed drastically in about 2-3 years.  I've had a host of other randomly odd symptoms and been to a few doctors sporadically during this time to try to figure out what might be going on.  I was really starting to get depressed because I'm a pretty active person, I'm NOT lazy and I don't eat badly.  I do like to cook but we eat most of our meals at home and I avoid most processed foods.  Simple things were starting to get hard like getting up from a chair, I was losing my hair, crazy baffling stuff.  My OBGYN thought I was going through early Menopause.  The GI doctor thought I may or may not have IBS.  The list goes on.

The GI doctor was astounded at my high blood pressure.  It was averaging 160/120.  My heart rate stayed around 120 most all of the time.  He sent me back to a primary care doctor who after a month of trying to get my BP down with no luck sent me to a cardiologist.  Thank goodness for a wonderful all-knowing cardiologist.  After determining I didn't have any heart related problems or abnormalities he went the extra mile on some blood work to try to determine the cause of the sky high BP.  He found an abnormally high level of something called Cortisol and suggested I might have something called Cushing Syndrome.

http://en.wikipedia.org/wiki/Cushing%27s_syndrome

After looking up this and reading the signs and symptoms I was astounded at how much they matched exactly every single thing that had slowly been going wrong with my body.  The cardiologist referred me to an endocrinologist who started tests about 2+ weeks ago.  All the tests were starting to come back for very very high levels of cortisol, also leading to a possible Cushing's diagnosis.  But apparently one of the main tests that shows where the cortisol is coming from (usually your pituitary gland) came back negative.  Luckily she went ahead and ordered a CT scan of my abdomen last week to check for an Adrenal Mass (also a primary cause of Cushings).  

After just returning today from the doctor I have confirmation of a 2.5 cm soft tissue mass on my left adrenal gland.  It was an odd moment to rejoice that they found a tumor in my body.  A probably benign tumor that hopefully they can remove as soon as possible and I can start healing.  I'm still waiting on specifics of the surgery but it looks fairly non-invasive and after 3-6 months of drug therapy I should be on my way to feeling MUCH better.

I'm still not even sure what all this means but in the short term I can tell you a couple things. 

-It's an amazing relief to know something is actually wrong with me and it's not just in my head.  

-I think I'm going to take a break from the garden this year.  This actually makes me pretty sad but it's so much work and I just don't have the energy and I'm not sure how I will feel after surgery.  I thinking of subscribing to a local organic produce delivery service for the Spring and Summer instead.

-I appreciate all the thoughts and prayers from everyone for the last couple months as they have been working so hard to try and get the proper diagnosis for me.  I've been praying for almost a week that they please find something conclusive that will make me well and it looks like they finally have!

So when I know more I will update but this was the easiest way to let everyone know what was going on at once.

      

Why I Watch...

Ok so I haven't blogged in awhile.  A long while.  The garden is wrapping up (although I need to pick okra and peppers sometime this morning.)  I've been cooking away as usual but nothing super blogworthy...so I'd like to take a few moments to discuss something near and dear to my heart right now. 

Here Comes Honey Boo Boo

Ok I know...many of you will be quick to dismiss my posting and throw me under the bus but I'd like to make a couple comments about the increasingly popular show.

First of all, don't knock it til you've seen it-at least three times.  I'll admit, the first episode I watched I was a bit puzzled/not that impressed.  A certain person who will remain nameless (but lives with me) watched it once and said he was never watching it again, the second time he was skeptical but he was hooked by the third show.

Why I Watch-

#1.  They are just so real.  I mean you really can't make that stuff up.  Between the walls of the dining room lined with rolls of toilet paper gotten for free with coupons to the processing deer meat from local roadkill-you wouldn't believe this stuff if someone told you about it but it happens.  People go to the VFW to play Bingo, well they do around here.  

#2.  They have a good time together.  From the above ground Wal-Mart pool that Sugar Bear (the Dad) spent a couple days assembling so they could swim to the "guess who's breath this is" game.  Everything they do is met with laughter and goodheartedness.  (Is that a word?)  They have fun as a family.  They seem to spend lots of quality time together. 

#3.  They love each other.  Sugar Bear puts up with a whole house of females, including three daughters who are not his own, yet he seems to work hard to support them and cares deeply about all of them.  When the new baby was born in the finale (yes to a very young teenager) the baby was born with an extra thumb (again you can't make this stuff up.)  But instead of being negative, June aka Momma aka the new grandmomma (who is younger than I am) said something to the effect of, better to have one extra finger than not enough.  Which leads me to...

#4.  They are always positive.  When Momma makes a batch of her "sketti" which is nothing more than noodles with butter and ketchup on them they all praise her, say it's their favorite food and tell he she's "the bomb".  Sure some of them are eating it out of recycled butter tubs on the couch, but they are all eating together and told Mom she did a great job.  When was the last time someone told you your dinner was "the bomb"?

I watch a lot of reality tv.  From Pawn Stars to Pickers to Survivor to Master Chef, the list goes on.  But there is just something endearing about this show.  I heard this morning they were paid $5,000 an episode for the first short season and that in renewal they will be paid $20,000 an episode.  They turned down offers from TLC of a bodyguard and a new house.  I hope they keep it real, save the money for college for those girls and continue to display love and caring for each other, because that's why I watch.