I am gearing up for surgery next week.  I helped clean my storage shed out on Saturday.  It wiped me out but I did it.  I still have a few storage tubs to go through. I am hoping to get through them this week.  I am trying really hard to do more things.  I have actually made dinner, with help, several times in the past couple of weeks.  That certainly helps to make me feel better about myself.  It's not hard to get discouraged and just feel like a worthless lump when all you do is lie around all day.  Unfortunately, I don't have the energy to do much.  It's hard to have my adrenaline level soo high all the time. 

I have learned to slow down and be thankful for a lot more in my life.  But I am also looking forward to getting better and getting back to my life.  It was good to realize during my pre-op visit that I have lost weight and kept most of it off.  I weighed 244 lbs. on January 10, 2011.  I started this journey of illness on February 28, 2011.  I know this date to be exact because it was the day I had my first miscarriage.  That was and will remain a very dark day in my life.  I started gaining 5 - 10 lbs a month.  I was eating healthy, had cut out most sugar from my diet, and was exercising.  The so called doctors I was seeing could not explain why I was gaining weight or starting to have the other medical issues.  They would say my lab work looked bad or suspicous, but let's wait and see.  That turned into me weighing 345 lbs at the highest I have recorded, but I got to the point where my scales wouldn't weigh me because they said I exceded their limit.  So, I know I was 350+.  When I went for my pre-op visit I now weigh 320.5 lbs.  It's still way too much, but at least I'm down from the 350 lbs. and will hopefully just keep going down more and more.  I look forward to having the energy to exercise or even just do normal household chores will help.

I am going to set short term goals.  My first is this, three months from now I want to have had my surgery.  I want to have lost 20 lbs. and be under 300 lbs.  I want to be doing household chores and hopefully not need a wheelchair anymore.

Yesterday was a very long day.  12 hours round trip to St. Louis and then back to Springfield.  Pre Op appointment took about 2 hours.  I was exhausted after we got home.  But luckily for me, since I was just released from the hospital on October 4, they didn't have to do any labs.  My surgery is hopefully set for October 31.  I am still apprehensive, but optimistic because of all the other cancellations.  I was told by a nurse that Dr. Brunt, my surgeon, is the best on the planet.  She says she works on the floor where he does surgery and that he does this kind of surgery on a routine basis.  I will be in the hospital approximately 2 - 3 days.  It will depend on how my labs go.  With me having so much trouble getting my blood sugar under control it might take a little longer in the hospital.  I am ok with that as long as this surgery goes and I can start recovering.

I was very determined today to go through the stuff in my storage shed.  With help, I was able to get through most of it before I went into total collapse.  Now, after I rested a little, I am feeling a little better.  I have been trying to do more, it is usually just so hard because of my body and the constant aches.  The adrenaline rushes really do me in.  I am so tired from my body feeling like it is running a race ALL the time.  I don't know if I'm ready for the adrenaline to be gone or not though.  I hear it is a major withdrawal and you feel like crap.  So, I'm sure there is a down side to getting through the tunnel and to the healthy side of life again.  I think I am ready for this challenge.  I am going to face it head on and hope for the best.

I am looking forward to Thanksgiving.  I am hoping to feel better by then.  One of my daughters has a birthday the day after and will turn 10 years old.  My kids are growing up so fast.  Can't believe the oldest one graduates from high school in 7 months.  She is my rock and my support.  She helps me out so much.  I hear parents complain about their teenagers and how horrible they are.  I have one of the best teenagers on the planet.  Yeah, we have our moments and get into it from time to time.  But I would not be able to make it through my days without my daughter.  She is one of my best friends and I love her so much.  I am very proud of the young, beautiful woman she has become.

I'm off to St. Louis again today.  This will be a long day. It will be round trip.  My mom, husband, and myself will leave around 8:30 am and get back around 7:00 pm tonight.  It is just a "quick" trip for my pre-op and anesthesia visit.  They will do all the paperwork for my surgery.  They will also do blood work and probably another EKG.  I've done one of these visits before for the cancelled surgery.  I'm getting nervous and anxious because I am hopefully a week and a half away from surgery.  I am just scared something else is going to come up and they are going to cancel it again.  I want this surgery to go. I need this surgery to be done with.  I cannot figure out what else is wrong with me and start the healing process without this surgery completed.  I guess I just have to pray and hope it goes this time.

I have been thinking about what Cushing's has taught me or rather forced me to learn out of necessity.  I have learned to be more patient.  I can't rush through things anymore.  I depend on a wheelchair for mobility most of the time now.  I depend on other people helping me a lot now because I can't physically do a lot of things I used to do.  My goal is to get my independence back once this surgery is over and I start recovering.  I certainly don't judge people like I used to.  I'll admit I was one of those people who would look at someone and say.... they don't look sick or they are just fat and need to lose weight.  What is wrong with them?  I had learned this lesson a little by watching my dad and my first husband go through their illnesses.  It really hits home with me now.  I have a lot of things wrong with me, but to look at me you wouldn't really be able to see them.  I look like I'm just a lazy, fat woman who needs to lose weight.  You can't see the fact that my heart rate is about 110 - 120 beats per minute just sitting still.  Every time I stand up and just walk 5 or 6 steps my heart rate increases by about 20 or 30 beats per minute and if I were wearing a heart monitor it would send alarms off. My body aches all the time and makes it difficult for me to move.  My muscles are stiff and the longer I sit, the stiffer they get.  That also makes it difficult for me to move.  There are many more symptoms I have, but that gives the general idea of how I understand and have opened my eyes more to not be so judgemental of people.  I now really understand that everyone has their own story and unless you know their story you shouldn't judge them.  I do understand that there are people who are just mean and hateful, but I also understand that life and the way they have been treated may be part of the reason they are that way.

I guess my point to all of that is to not judge people too quickly.  We should all try to be more understanding and tolerant of each other.  Maybe if we helped people out and showed a little more kindness to each other the world wouldn't be such a stressful place.  It really touches me to see stories about family, friends, and strangers helping people out in their darkest hours.  I recently saw a story about a couple who ended up finding out they both have cancer.  The couple have two young boys and their income has been affected because they are both going through cancer treatment.  People are coming out of the woodwork to help them.  That makes me happy to see stories like this.  This is what the world needs more of.

Ok... embarrassing confession time... For some reason, because of the Cushing's and the things it does to my brain... I am scared of stuffed Winnie the Pooh's.  My husband has two stuffed Winnie the Pooh's.  Nothing special about them, just stuff toys.  They don't sing or dance, just stuffed animals.  I was having one of my attacks about a week ago and he was helping me lay down.  For some reason the dang Winnie the Pooh's were on his side of the bed.  They scared the crap out of me and made the attack worse.  I haven't been able to look at them since.  Just the thought of them in the closet or somewhere scares me.  I start shaking and having another attack when I see them.  It is embarrassing to think about, but important for me to post here because it shows just how crazy Cushing's Syndrome is.  It does bizarre things to your brain and there really is no explanation for why it is happening.  It is very frustrating.  Well, I guess I better go for now... Off to St. Louis.

I just want to say that coupons are a wonderful thing.  I have saved a lot of money by looking up coupons for my medications.  Last month I saved around $150 on prescriptions by looking up the drug company and finding discounts.  They changed my medication and put me on two new insulins when I was released from the hospital at Barnes. So, we came home and the prescription were going to be $120 to get insulins and syringes.  We had the pharmacy call the doctors, got prescriptions changed to the flex pens so we didn't need syringes. Plus I had found coupons for flex pens so we saved $95 on insulins this month.  I also have two coupons for next month already so the insulins will be for free.  I got a call from Liberty Medical a couple of days ago.  I had filled out a survey online and said I had diabetes.  They are sending me a new smart meter, and three months worth of test strips, alcohol wipes, the pen needles I need for my insulin pens.  All paid for by my insurance, they already have it approved.  And they are sending me a cookbook for diabetics.

I look for every chance I can get to save money.  Being sick is very expensive and we didn't have a lot of money to begin with.  With me not being able to work it makes things even tighter.  Trips to St. Louis with the four hour drive each way, gas for that, and motel stays when I have extended stays in the hospital add up in the money department fast.  I am very grateful when I find ways to save money and feel like I am contributing positively instead of taking away from our finances.

I'm very concerned because I can feel the tumor in my right side.  The doctors said I shouldn't be able to feel it.  I looked up the symptoms of adrenal gland cancer and that is one of the symptoms.  I think of worst case scenario and then hope for the best.  I loaded some new pics of myself over the last few years. There has been a big transformation.

When I was released from the hospital the doctors told me that I would be having my surgery on November 7 as planned.  The only way that date would change is if they found something on my abdominal MRI and moved the date of my surgery up.  So, I got a call from my surgeon yesterday. They have moved my surgery up to October 31 and will move it up sooner if they get an opening.  I am scared by this.  They already "highly suspected" the adrenal tumor was cancer.  So, what did they find on the MRI?  All I know for sure is that my surgery will be one week sooner than it was.  This is good and bad.  Good that we get it out of there, bad because that means it is probably cancer and I will have yet another battle to fight.  I can do it though.  I am a persistant woman.  I do not give up.  I may be kicked down from time to time, but I will dust myself off, get back up and fight.

Normal tasks make me tired. Washing dishes, taking a shower, walking anywhere all wear me out and make my heart rate go crazy.  I look forward to my heart not beating so fast ALL of the time.  I figured this out, the doctors want me to exercise to lose weight.  My body never sees anything I do as exercise because my heart rate is accelerated ALL of the time. So what am I supposed to do, without giving myself a stroke or heart attack?? They just need to think about things like that. IDIOTS!!!

It's been a while since I was able to add something on here.  I have had an interesting week.  I went to Barnes-Jewish Hospital ER in St. Louis, MO on Friday, September 28.  I was having one of my attacks and since that is where I will have my surgery I wanted these doctors to see attacks and tell me what was happening.  They immediately took me for a brain CT scan.  It was ok, but they admitted me to hospital for additional testing and to see if I had myastenia gravis.  I had numerous blood tests, some came back right away and others were sent off and won't have results for a couple of weeks.  I also had MRI of brain and adrenal gland.  The doctors are "highly suspicious" that the adrenal tumor is cancer.  Do not have results back from that MRI yet.  I also had a nerve conduction study.  For those of you who have never experienced this... A nerve conduction study is when they put electrodes on you that have needles attached to them and then they proceed to put electric shock through them which forces the needles into your muscles.  Not a pleasant experience.  This was done on my left shoulder, hand, leg, foot, and around my left eye.  The left eye took them over an hour to get good results because they said I kept moving.  I wasn't trying to. You stick needles and electric shock through my face, I guess I involuntarily moved.  The tests turned out good through because it did not show signs of myastenia gravis.

Then they set up the MRI for my brain and abdomen.  Doctors ordered me NPO after midnight. OK, not eating till after tests.  Hospital had flooding issues on MRI floor and I ended up not being able to go down for test until 6:00 pm.  Then, they realized they can't do both tests at same time because they are with contrast and they can only watch one area at a time.  They do brain MRI first and reschedule abdomen for next day with the stipulation it has to be 24 hours later to allow contrast to get out of my system.  I get one meal and have to go NPO again.  I had a dried out biscuit with one piece of turkey, watery chicken noodle soup, and a small chef salad... only thing they had on hospital floor at 9:00 pm at night when I got back to room.  So, I ate my food and then waited to test the next day.  By 8:30 pm next night I told my nurse I was pretty sure they had cancelled my test, rescheduled it and just not told us.  I ended up talking to head nurse who in turn called my doctor after numerous calls had been made to MRI department.  At midnight, well over 50 hours later and only 1 meal I was informed the doctor had just found the MRI department had cancelled my MRI at 9:00 pm and did not call my nurse to let her know.  I was finally allowed to eat.  My mom went to the cafeteria and got me fries, onion rings, chicken sandwich, and egg roll.  I ate so fast it threw me into an attack, but at least I was able to eat first.  The next morning one of my doctors was in the room when the nutrition department brought me breakfast.  I told them I still had MRI to do, doctor said that they had figured out I really didn't need to be NPO for test so it was ok for me to eat.  REALLY!!!! I went 50 hours with only one meal to find out I didn't really need to go without eating?? I am diabetic. This is ridiculous, but at least I was able to eat.

I was released from the hospital on Thursday, October 4. My mom drove me home from St. Louis because my husband had returned to Springfield to work.  It was fun to surprise my family. They had no idea.  So, for now I deal with my diabetes, high blood pressure, and Cushing's. Figured out my "attacks" are from Cushing's but they mimic the symptoms of myastenia gravis.  That is why my doctor thought I had it.  I also wait to see if I have cancer.  My adrenal gland surgery has been rescheduled for November 7.  I just hope it goes this time around.

I heard back from the neurologist office today.  They were under the impression that I was inpatient at Barnes Jewish already. That is why the doctor said he could see me.  I guess he is the one in charge of consultations with all inpatients.  So, they advised me to go to the Emergency Room at Barnes Jewish when I am having my symptoms and he will be called to consult.  Otherwise, I have to wait until November to be seen in his office.  The new plan is for my husband and I to go to St. Louis on Friday and go to the Emergency Room.  I know the trip, any long trip, will make me have an attack and without my medicine it will be bad.  That is a 4 hour trip for us, so I will be ready for the ER when we get there.

I just want to figure out what is wrong with me.  I want to be able to be as healthy as possible.  I know this is a long road to recovery for me.  I just have so much I want to do.  I am trying to be as positive as possible.  My adrenal gland surgery has been rescheduled for November 7.  I just need to have all the other illnesses and symptoms figured out before then so my surgery can be as safe as possible. 

My family is being incredibly supportive of me and I cannot thank them enough.  I know this has to be frustrating for them also.  My 6 year old son is starting to get scared.  He gave me lots of hugs before he went to school today.  It breaks my heart that my children have been through so much in their lives already.  My dad was sick for two and a half years before he passed away in 2008.  My first husband, the kids dad, found out he had Stage 4 Kidney Cancer a month after he turned 36 and died two and a half month later in 2009. My mom has had numerous strokes and been sick.  She is scheduled for thyroid surgery October 10 to see if she has cancer.  My oldest daughter was hit by a car in 2010 and broke her leg in 4 places.  My son broke his arm sliding at preschool last year.  My middle daughter had a tumor removed from her face in 2011.  Luckily it was not cancer.  Lots of illnesses.  We are ready for some normal.  The bright spot in all of this was me finding love again and remarrying in August of last year.  I love my husband so much.  He is a wonderful husband and step father to the kids.  We have been blessed with him in our lives and we are thankful.

So my whole world felt like it fell apart  yesterday.  It all started on Friday when I went to my endocrinologist for a weight and liver check.  I was having one of my attacks. The ones I have described where I have slurred and labored speech.  I had taken a shower a couple of hours before my doctors' appointment and had the stuttering, body seizure, shaking, and difficulty talking attack.  The talking didn't get better this time.  The doctor walks into the room and I am trying to talk to me.  He asks me what's wrong.  I tell him it's just one of my attacks, part of Cushing's, with rest it will get better.  He tells me NO!!! NOT PART OF CUSHING'S!!!

I say Yeah. Been happening a lot more since July 2 surgery attempt. It will get better with rest.  He tells me again that No... Cushing's is endocrine problem. The trouble with the speech and what I was describing is a neurological problem and he asks if he needs to send me to ER.  He finally does some research and tells me he thinks it could be a "rare" disorder called Myastenia Gravis.  But, according to him, this would be "extremely rare" especially since I have Cushing's also.  He realizes that we have never done an MRI to check my brain for possible tumors. So, since surgery is scheduled for Wednesday he orders a STAT MRI of my brain to rule out brain tumor, pituitary tumor, and MS.  I go to the hospital as outpatient for MRI.  Because of my size, I do not fit in their closed MRI machines... They tried 2 of them.  (I am happy to report I had lost 4 pounds so I am down to 321 lbs.)  I end up at another outpatient facility that has an open MRI.  I am able to get on this machine, fit, and keep myself from having panic attacks to do the test. 

Seven hours after I originally left for my doctors appointment, my daughter and I get back home.  As we pull in the driveway my doctor is calling me with test results from MRI.  Good news.  No brain tumor, no signs of MS, and no pituitary tumors.  Which means it could still be this "rare" myastenia gravis disease.  So, the doctor says he has talked to a neurologist.  Since we have no time to test for this disease before my surgery we are going to try medicine for it.  IF I don't have the disease the medicine will not hurt me. It basically won't do anything... IF the medicie works, then I probably have the disease.  My husband goes to the pharmacy to get the pills.  There are 4 of them.  I am supposed to take them at the beginning of an attack and see if they help with the symptoms.  So, I wait. 

Saturday morning I was at my in-laws, who live next door, having breakfast.  I get through breakfast and start having an attack.  My daughter helps me home and I barely make it in the door.  I sit on the bed in full attack... seizure, shaking, can't talk, stuttering, eyes drooping, have to close eyes because they are too heavy to keep open, and whole body aching.  I manage to take one of the pills with some water.  I lay down and we wait.  I don't know how much time passed, only about 10 or 15 minutes.  I can feel the difference.  I try speaking and say my daughter's name, in a normal voice.  I ask if she can hear me.  She says Yes.  I am talking totally normal, no stuttering or difficulty talking at all.  My body has stopped shaking and I can feel it easing up of pain.  My eyes are fine and my symptoms are going away.  In 15 minutes tops my symptoms are being relieved.  I am both happy and upset because this means I probably have myastenia gravis. Yet another "rare" disorder to add to my list of diseases I have.

I took the medicine as prescribed all weekend.  One pill every 12 hours as needed for symptoms.  I felt the medicine wear off and another attack would come on about every 12 hours.  But I felt better all weekend.  I was able to get up and walk around and actually felt like I had energy.  I was awake more over the weekend than I have been for months.

So, it brings me to yesterday.  I called my doctor as soon as I could to let him know the pills were working.  I had taken all 4 of them and now need to know what we need to do.  He calls back right away and says we probably need to cancel my adrenal gland surgery.  My world stops.  WHAT!?? He explains if I have myastenia gravis and go into crisis during surgery it would kill me or at the very least I would end up on a ventilator... So, that's what happened in July during my surgery?? Yes, probably so. 

I have to call a neurologist in St. Louis today to set up an appointment for testing of this new disease.  My adrenal gland surgery is postponed until sometime in November.  This much recovery time ahead of me, I have to make a decision about my job at the library.  I love my job and the people I work with.  I have been there for seven of the most difficult years of my life and the people I work with are family to me.  The have been through my dad's illness and death, my pregnancy with my son and all the trouble I had with it, my first husband's cancer and death, my mom's illnesses and strokes, my oldest daughter breaking her leg after being hit by a car, and now my illness.  They have supported me and done more for me than I could have ever dreamed.  I will never be able to thank them enough for everything they have done for me and my family.  I can't keep having the department I work in be short handed because of me.  So, I made the decision that because of my medical condition and long recovery time ahead of me I am going to have to let them replace me.  My boss is very understanding and she reassured me that once I am able to come back to work, they will find a position for me. 

Hard day, I cried a lot.  Hoping today is much better day. We shall see.  I am NOT giving up. 

I am a week away from surgery now.  I called my surgeon on Monday to make sure the surgery was going to happen whether I lost weight or now.  My endocrinologist told me I had to be down to under 300 lbs to have surgery. That is kinda hard to do and unrealistic considering I weight 325 lbs now and it is because of my Cushing's.  The nurse called me back and said the surgeon is ready to go.  He feels I have waited more than enough time, actually probably too long, and will do this surgery on September 26.  So, I am set to do.

Now I am nervous, excited, frustrated, and so many other emotions.  I could live or die from this surgery.  I am so scared because of the first attempt at this surgery. But I am much more confident in the new surgeon.  He knows what he is doing and he has a lot of knowledge about Cushing's Syndrome and it's affects on the body.  I am going to Barnes-Jewish Hospital in St. Louis, MO for my surgery.  This is a very well known hospital so I feel better about that also.  This is a teaching hospital.  They will do the best they can.

I fear the unknown though.  I know I am going to have withdrawal symptoms from the Cortisol not being in my system anymore.  I have ready that the withdrawals are brutal.  I am not looking forward to that. But at least I know if I am going through that then I am still alive and fighting. I just read an article that said a majority of Cushing's syndrome surgery patients have a negative post-operative recovery experience.  This scares me.  That is what I am facing.  I just have to try to remain as positive as possible and pray for the best.

Today was a bad day physically.  I felt horrible all day.  My body was tight from cortisol and felt swollen.  Everything hurt and I slept most of the day.  I was nauseous and just felt moody.  I tried warning people I was not mentally capable of thought or conversation.  Now insomina has kicked in.  The house is quiet with everyone in bed asleep, except for ME.  I feel somewhat better now and it pisses me off that I feel like this when my family is sleeping, but not when they are awake.  I want to be able to do things with my husband and kids.  Well, hoping for a better day tomorrow.

I am 10 days from second attempt at surgery.  Saw my endocrinologist on Thursday, September 13 and he was very discouraging and frustrating to me.  He said that because I had gained 1.6 lbs and am at 325.6 that surgery might now happen. The surgeon ideally wants me under 300 lbs. That is all fine and dandy, except for the fact that Cushing's is why I weigh so much. It's not just magically going to come off because they put me on meds and restrict my diet.  I started counting calories for real to make sure how many I was taking in.  I'm eating between 1200 and 1400 calories a day, which is the diet the surgeon put me on. I am following the rules and doing what I can. It's not my fault that I am NOT losing weight.  Going to call surgeon's office today to confirm if surgery is dependant on weightloss. 

I don't feel I can wait much longer for this surgery.  My right side is starting to hurt a lot more. I am afraid the tumor is growing or it is cancerous and spreading.  They could not determine from the CT they did May 31 if it was cancerous or not.  I am very nervous about it being cancer and all this time has allowed it to spread.  I guess we will find out once they finally remove it.

During my endocrinologist visit he took me off the Ketoconazole.  Said it is not working and it is starting to damage my liver, like I need more damage there... So, discontinued that and started me on Levemir for my Type 2 Diabetes.  My fasting blood sugar average is 300. That's way too high.  So far with all the medicines I am taking it's not doing anything for me.  Not working.. Don't know what they are going to have to do to make it work.  My blood pressure has been good at least.  That is the one thing that is keeping me encouraged and going is that it is staying in range where it needs to be.

I have been reflecting on my life.. Where I am now and all that I have been through.  Also reflecting on where I want my life to go.  I have been examining what I want to do with the rest of my life. I have different angles to look at now.  I have to be realistic and consider what I want to do for a job in case I can't go back to my old job.  Also have to consider what I will do if I end up in the wheelchair because of my muscle and leg weakness.  Lots of things to think about.  And of course, it goes through my mind of what will happen to my family if I die.  It's a real  possibility and it scares us all.  I just have to pray and trust that God has a plan in mind for us and I will accept it no matter what it is.  There is a reason for everything.  I will not give up. I will fight.  I will win.

Insomnia is evil.  It goes along with Cushing's, but it is evil.  It's 1:45 am and my family is asleep.  I however, cannot sleep.  I'm tired and wish I could, but as soon as I lay down my mind fills with a million different thought and my eyes fly open.

Two weeks until my surgery.  I'm hoping everything will go well and I will be able to have the surgery.  I want to start recovering from this.  I have talked to a few Cushing's patients now.  The ones who have gone through this surgery say it takes months to feel better.  They say I will feel worse before I feel better.  While I am not looking forward to that aspect of things, I want to feel that to know that I am on the other side of this.  It scares me to be on the "tumor side".  I'm still nervous that they are going to find this tumor to be cancerous.  Then what do I do.  It's been in me for an extra two months.  Has it spread?  Has it grown?  Will it be even harder for the doctor to remove?  These are the things my mind is thinking of.

I have the support of a wonderful group of friends and family, but ultimately it is up to me to make my recovery happen.  I have to work hard and make it through all the times both good and bad.  When I get discouraged I am going to have to make sure I get myself back together and trudge through it all.  I can do this.  I can be a survivor.  I just have to remember what my daddy taught me.  You work hard and make the most of every situation presented to you.  I will survive and recover from Cushing's!!!

Some days are better than others. Today has been a mixture of both.  I made a new friend on Facebook.  She seems to have had some similar problems I am now having, but her case is much worse.  It was good to connect with someone who truly understands what I am going through.  I have a very supportive husband and children.  There are also some of my friends and family that are supportive.  But no one can truly understand what a Cushie goes through except another Cushie.  I am glad that no one else can understand this because it is not fun.  It is very painful. 

I have 16 days until my surgery.  I am both excited and nervous for this to happen.  I am slowly getting things lined up so everything is in order.  I know this is going to still be a long road, I just want to be on the recovery side of this.  I have been fighting for this diagnosis and surgery for nearly two years now.  It was strange to realize that a couple of weeks ago.  I had went to St. Louis for my pre-op visit and they said something about me having these symptoms for two years.  I corrected them, but then thought about it and realized they were correct.  It just seems like such a long time now.

I use a wheelchair to get around my house now most days.  I am too tired and it takes too much energy to walk.  My body is stiff and my limbs just won't cooperate.  I am too prone to panic attacks when I go out in public so I don't go out anymore.  I only go out for doctors appointments and that is very hard and stressful on me.  My husband and I took the kids to the Omaha Zoo a couple of weekends ago and that did it for me.  I had panic attack at zoo and many more on the way home.  I cannot do that anymore.  Have to wait until I can get this all under control.  I am missing my two smallest children's Open House tonight at school because of this.  It is too stressful.  My speech is screwed up and I can't be understood when I speak.  I hate what Cushing's is doing to me.  I want to be a whole, functioning person again. 

I was looking over some information I have gathered about Cushing's and thought this would be good to share.

Endocrinologists (doctors who specialize in Cushing's Syndrome and its related issues) realize the medical aspect and know the damaging effects that Cushing's has on the body. Family and friends see their Cushie suffering and know they are hurting physically and often times mentally and emotionally. However, understanding the debilitation of Cushing's and how it can affect every aspect of a person's life can only be truly realized by those who have experienced the syndrome.
Cushings Help Organization, Inc., a non-profit family of websites maintained by MaryO, a pituitary Cushing's survivor, provides this letter for patients to provide to their family and friends in hopes of providing a better understanding Cushing's and it's many aspects.
We're sorry to hear that your family member or friend has Cushing's Syndrome or suspected Cushing's. A person may feel better at times then at other times. It's common for a Cushing's patient to have burst of energy and then all of a sudden they become lethargic and don't feel like moving a muscle. There are many symptoms that are associated with Cushing's. They include weight gain, fatigue, muscle weakness, shortness of breath, feeling achy all over, headaches, blurred vision, mood swings, high blood pressure, stretch marks (straie), buffalo hump, diabetes, edema and the list goes on. Hormones affect every area of the body.
It is important to note that not all patients have every symptom. Even some hallmark symptoms, such as straie or the "buffalo hump", may not be noticable on every patient. Not everyone who has Cushing's will experience the same symptoms, treatment, or recovery. Because not all "Cushies" have these symptoms, it makes diagnosis even more difficult.
Cushing's can cause the physical appearance change due to weight gain, hair loss, rosacea, acne, etc. This can be very disturbing when looking in the mirror. Changes in appearance can often cause the Cushing's patient to withdraw from family and friends making it a very lonely illness. Patients often feel alone or withdrawn because few others understand.
Cushing's can affect affect anyone of any age although it is more commen in women.
Cushing's patients need to be able to take one day at time and learn to listen to their bodies. There will most likely be times when naps are needed during the day and often times may not be able to sleep at night due to surges of cortisol. Your Cushie doesn't expect you to understand Cushing's Syndrome completely. They do need you to be there for them and try to understand to the best of your ability what they feel and not give up on them.
Often a Cushing's patient may be moody and say things that they don't mean. If this should happen with your Cushie try not to take it personally and know that it's most likely caused by the elevated cortisol and disturbances in other hormone levels caused by the Cushing's and not from the heart or true feelings of your Cushie.
It can be very depressing and frustrating having so many limitations and experience things in life being taken from you. Cushing's patients are sick, not lazy, not hypochondriacs or even the newer term "Cyberchondriacs". If a Cushing's patient says they don't feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you. Telling a Cushie to think positive thoughts will not make him/her well and will just be aggrivating.
Testing procedures can be lengthy and this can become frustrating for the patient and family. Often, it takes a while for results to come back and this can be stressful. Don't look to far ahead just take one day at a time and deal with the situation that is at hand at the present time.
After a diagnosis is made then it's time for treatment. Surgery is usually the best treatment option for Cushing's that is caused by tumors. Don't be surprised if the surgeon's facility wants to run even more tests or redo some of those that have already been done. Your Cushie may have to travel a ways to find a surgeon who is trained in these delicate surgeries and who has performed many of them.
Once the diagnosis has been made and treatment has finished then it's time for the recovery process. Not all patients who have surgery are cured and they have to make a choice along with the advice of their doctor as to what their next treatment option will be.
The recovery from the surgery itself is similar to any other surgery and will take a while to recover. The recovery process obtained from getting a cure from Cushing's is quiet different from other surgeries. A Cushing's patients body has been exposed to excess cortisol, usually for quite a long time, and has become accustomed it. When the tumor is removed that has been responsible for the excessive cortisol and the body is no longer getting it this causes the body to have withdrawal symptoms. Withdrawal can be very hard causing an array of symptoms muscle aches, weakness, bone and joint pain, emotional disturbances etc.
Thank you for reading this and we hope it will help you to understand a little more about Cushing's and the dibilating affect it can have on a person. Thank you for being there and supporting your Cushie during this time in their life. We realize that when a family member has Cushing's it not only affects the individual but other family members and those around them as well. Showing your love and support will encourage a speedy recovery for your Cushie.

I'm getting ready to go to St. Louis for my pre-op visit on Friday.  I am anxious but also excited to finally be within a month of my surgery.  I know I need to keep working on losing weight and getting my liver to shrink.  I think I am starting to figure out some things about my health though.  One thing I have discovered is that I need to eat small, frequent meals instead of only a few big meals.  When I eat small meals my cortisol level doesn't shoot up as high and I have been able to do a little more and feel better.  I actually had a moment, laying in bed a couple of nights ago, where I felt good.  I couldn't feel a pain in my body and that was amazing.  It was a strange sensation for me because I have had constant pain for so long now.

My kids are back in school and doing pretty well.  I had to use the wheelchair to go to meet the teacher at my younger two children's school.  I did not have the energy to walk around the school.  I am also taking the wheelchair with me this weekend when we go for my pre-op visit.  I was just thinking and realized I haven't driven a car in nearly three months now.  It's the little things like that and losing my independence because of it that really get to me some days.  I went with my oldest daughter when she went to the doctor today.  It was the first time I had been out of the house like that, except for my own doctors appointments, in a very long time.  I don't even go out of the house most weekends because it takes too much energy or I just don't feel like it.  I am probably depressed, at least to some degree.  I am still constantly tired, except at night when insomnia hits me and I can't sleep for anything.  No matter what I try sleep evades me.  I will pass out around 4 am, that is the usual thing now.

My hope in all of this is that surgery goes well and I can get back to work soon.  Whether I can go back to my part-time job at the library or have to find another job, I just need to be working to help my family survive.  Money is tight without me working. It's going to get tighter soon because my husband just found out he has to have surgery.  He has an old neck injury that is hurting him.  He has a bulging disc and a bone spur in his neck that are pressing against his spinal cord and restricting blood flow.  We will make it somehow, I'm just not sure how right now.  They say when it rains, it pours. I am tired of the bad stuff happening. Praying for good stuff to start soon.  I know God will take care of us and it will work out.  Just have to pray harder.

I went to see the doctor on Tuesday.  My weight was down 5 pounds, my blood pressure and heart rate were awesome. My liver enzymes were down so it means my liver is shrinking some.  Very good news. The doctor put me on a new medicine for the diabetes, in addition to my Victoza.  Hopefully it will help get the blood sugar levels under control.  Very positive news as far as my health goes. Hopefully things will keep progressing like this and the surgery will be successful. Only time will tell. Still frustrated that I am having to wait so long. Surgery is still a month away.

The doctor did not increase my ketoconazole because he says it is the normal dose.  He said that is why I feel like crap, because it is lowering the cortisol and adrenaline levels.  My body is so used to having the higher levels that it is rebelling and going through withdrawals.

I had another bad weekend. I slept through most of Saturday. Don't remember much.  The parts I was awake for involved eating and then having attacks of cortisol. That would take me out and make me pass out.  I'm getting really frustrated again with the whole process.  I just want the surgery to be done so I can start recovering.  I want my life back.  I don't want to spend the majority of my time in bed.  I feel like life is passing me by.  I understand the doctors want the safest situation possible for my surgery, but I am so afraid that if they wait too long they are going to say they can't do the surgery because the tumor has gotten too big.  I don't want this to get to the "inoperable" stage. 

My family is wonderful.  My husband and oldest daughter have really become a team and figured out how to handle my attacks.  We have even gotten it to where they are not as bad sometimes.  I just know that it wears on them to be my constant caregivers.  I don't like that I have become so dependant on others.  My hips ache a lot now.  I have gotten to where I have to use the wheelchair more to get around the house because my legs are not always strong enough to hold me up.  It is frustrating to have such skinny legs.  Because of the Cushing's my weight is from my waist up.  My legs actually are quite small and look like they belong to a skinny person.  I commented today that if the rest of my body looked the same as my legs I would actually have a normal size body.

I am hoping for a better week.  I go to see my endocrinologist on Tuesday.  I think he will probably up my dose of ketoconazole since I still have large cortisol rushes.  I don't think the dose it right yet.  I also need to talk to him about getting my blood sugar under control.  It has not been right since my attempted surgery and hospital stay at the beginning of July.  My fasting numbers are around 233 in the mornings.. That is too high. So, we shall see what he says.

I have had mixed results with my medicine so far.  So, I have good news and bad news.  The bad news is that my "episodes" have gotten worse when I have them.  I have had a couple of days when I've had my adrenaline/cortisol rushes and they have been brutal.  The first one happened Saturday night, August 11.  It lasted for three or four hours before I passed out.  It was also more intense than the episodes have been in the past.  The second one happened the following evening and lasted about five hours.  That one was the worst I've had so far and scared me more than anything.  My husband and oldest daughter also got very scared with that one.  I was passing out on them and couldn't control myself.  They had to put me in the wheelchair to get me back and forth from the bathroom.  I don't remember all of what was happening because it was very intense and I was not in control of anything.

The good news is that I have had some positive results from the medicine also.  I was also to go out with my kids and grandkids to the lake on Saturday, August 11.  I think that may have been why I have the bad episode that evening, I overdid it.  I was enjoying being out and having all my kids together.  I have also had two days and nights now when I have not had episodes at all.  I have been tired and still had some speech and brain issues, but not the adrenaline/cortisol rushes that take me out and make me pass out. 

I go for blood work tomorrow and then back to the endocrinologist on Tuesday to see how the cortisol level is doing.  He will adjust my medicine from that.  I went to see my regular physician on Tuesday.  He took my blood pressure twice himself.  He said the first time that my blood pressure was too good and he had to recheck to make sure he had gotten it right.  So in more good news, the blood pressure medicine is working again and my blood pressure seems to be under control and in a very good range.  All in all I am still very hopeful and optimistic about my health and surgery.  I know my new surgeon and his nurse are knowledgeable about Cushing's Syndrome as well as about the adrenal gland surgery.  That makes me feel so much better to know that they know what they are doing.

We have a definate plan now.  I am on 100 mg of Ketoconazale per day now.  This is to help with my cortisol level.  It is also supposed to help with weight loss.  I am somehow losing weight now and am very excited and happy about this.  I was at 340 lbs. at my highest weight.  I currently an down to 325 lbs.  My doctors have set a goal of 300 lbs for me to be able to have my surgery and remove the adrenal gland.  I am going to work my hardest to meet that goal.  I go back to my endocrinologist in two weeks for blood work to make sure the medicine is not hurting my liver.  Since my liver is so enlarged I am not supposed to lose weight too fast or it will hurt me.  So I am on a diet eating mostly fruits and veggies but making sure to get protein and fat in there also to help stabilize my body while my liver shrinks.  I am also supposed to get up and walk as much as possible.  This is difficult since my muscles will seize up on me and not want to work, but I am pushing forward and making them work a little harder to make progress and get myself back into the world of the living.

My surgery is set for September 26.  That gives me 6 weeks to lose weight and hopefully be in better shape.  It also gives the doctors time to get my blood pressure and blood sugar levels under control.  I am trying to not stress out about things as much. Just to let life happen and know that I am going to get through this all.  This is a crazy time of year.  The kids start back to school next week.  My oldest daughter is going into her senior year of high school.  Middle daughter is going to be in 4th grade.  My son is starting kindergarten.  I can't believe the time has flown by so quickly.  Where did summer go to? It seems like just yesterday they were getting out of school for summer break.

My husband and I just celebrated our 1 year wedding anniversary.  I am so blessed to have him in my life.  He takes such good care of me.  He is the rock that stands beside me when I am falling apart and I am so thankful for him.  My oldest daughter is my other rock.  We have been through hell and back and I would be lost with either of them.

I had my appointment with surgeon on July 31. I think things went well. I have somehow lost 5 pounds, which is wonderful news.  The doctor and his student spent 2 hours with my husband and me.  They did a thorough history of me and I was very impressed with his knowledge of Cushing's.  He has had other Cushing's patients and knows how to treat it.  I am on a 1400 calorie diet for a couple of weeks to try and reduce the size of my liver.  He could see from my CT scan that my liver is enormous.  He said that when I lean forward, it pushes all of my organs to my back so the surgery from the back is NOT an option.  Therefore, he will have to do it from the front and we need to make my liver as small as possible.  He is also consulting with an endocrinologist to see if there is a medication I can take that would stop the cortisol production for a couple of weeks and hopefully help with liver size reduction also. 

The plan is to be on this diet and possibly medication for about a month.  Surgery will be within a month depending on if the medication is an option or not.  It will be sooner if meds not an option.  The surgery normally would take 1 hour. My surgery will take about 4 hours because they will have to move my liver out of the way to locate my adrenal gland to remove it.  This is a dangerous surgery but it is NOT an option to NOT do the surgery.  Without this surgery I will die.  He is just trying to buy some time to try and shrink the liver and make this as safe as possible.  I am nervous, but have faith in the surgeon so we shall see how this goes.

I wish people would take the time to really understand what I am going through.  I don't necessarily want sympathy. I just want them to understand.  I am getting so tired of hearing people say that they have been sick before and know what it is like.  This isn't the flu or a cold people.  I wouldn't go up to someone with cancer patient or someone with another disease and tell them I know how they feel because I don't.  Each illness you get and each person has different symptoms and results.  There are many really bad diseases out there that make people feel like absolute crap, even though they will try to hold it together and not let the whole world see how they truly feel. 

I lost a few days this week.  My birthday on Friday being the first day.  I remember parts of the day, but was very sick.  I remember my mom and children and husband all getting together and we had lunch. Other than that, the day is a blurr.  I spent most of it passed out in bed. Sicker than I have been this whole time.  Couldn't walk part of the time and ended up using a wheelchair to get to the bathroom a couple of times.  Saturday was the same.  Don't remember but pieces of the day. Pretty sure for a 36 hour window I was out about 34 hours of it with just pieces here and there to go to the bathroom, cry, and hurt.  Very thankful for my family who see me through these times and take care of me.  I didn't eat much of anything. Mainly just survival.

Speaking of eating. My tastes have changed so much that a lot of things don't taste good anymore or they make me sick.  I can't eat chocolate, donuts, cake, and a lot of sweets because they will make me sick.  Plain milk makes me sick, so I can't eat cereal and milk.  I even turned down an ice cream cone tonight because I was afraid it would make me sick.  My snack of choice tonight... ice cubes. I also had some beef broth.  It's kinda funny that my weight is over 300 lbs. and to look at me I am a fat girl who just needs to lose weight by eating better.  My diet today was grape jello, homemade cashew chicken with noodle, beef broth, some pringles potatoe chips, and ice cubes.  There is just something wrong with the fact that I eat like that but have a disease that makes me morbidly obese.  I guess my point is this, don't judge a person by the way they look because you don't know what is really happening with that person.

I am anxiously awaiting tomorrow afternoon.  My husband and I will leave Springfield and stay in St.  Louis overnight.  Then, Tuesday afternoon I get to meet with the surgeon and see if we can do something about this tumor.  I so hope he doesn't think he needs to do a bunch more testing before we just take care of this.  I want the surgery scheduled and done so I can start recovering.  The longer I wait the more afraid I am that I will not recover.  I am still nervous because we still don't know if the tumor is cancerous or not. Many prayers are being said that things go quickly and I can start recovering soon.

So I just realized today that it is 3 days until my 40 birthday.  Amazing how time has flown.  I can guarantee that when I was a little kid my idea of turning 40 was not that I would be fighting a disease or "syndrome" like Cushing's.  My life has definately turned out a lot differently than I expected. Some differences have been good and some bad.  I feel I have come across each challenge and tried to fight and make the best of every situation.

I refuse to give up.  I may have one hell of a battle in store for myself, but I will fight and win this battle.  It is difficult sometimes.  The physical and mental challenges seem overwhelming a lot.  But I keep up and do what I can.  I have learned to slow down.  This is very difficult for me.  Also, accepting that I am not always in control and I have to just "go" with the situation sometimes is very difficult for me.  I am too much of a control freak, but I am learning.  I have also accepted that things don't have to be as clean as I would like them to be sometimes. 

I look forward to the time when I can do things as I want to and have them "my" way again.  But until then, I will accept things as they are and know that it will be ok.  I'm hoping that my next 40 years are filled with many great and joyous activities in my life.  Graduations, weddings, more grandchildren, me finishing my education, and just life in general.  Just living my life and being able to enjoy it with those I love.  That is what I am looking forward to.

Depression goes along with Cushing's.  It is very easy to get discouraged and to feel like it's just bad all the time.  I am trying to pull myself out of the depression.  Trying to get out a little more and get some sunshine.  This is difficult because of the heat advisory, but I am trying anyway.  I had a pretty good day yesterday.  The kids were at grandma's so the hubby and I got to spend the day together.  It was nice.  I miss the kids, but it was really nice to have some alone time with my husband. 

As the time get closer to my consultation with my new surgeon I am getting nervous.  I want the time to go quickly and to have the surgery and get better.  But the thought looms that this surgery is not a guarantee that I will be healed and the healing process can be a very long road.  I know I have to keep positive thoughts, but it is difficult sometimes.  I know that the adrenal tumor can be tricky.  Once they remove the adrenal gland, then they have to get my body to level out my cortisol levels along with the other hormones in my body.  I just want this journey to get started again.  Until I see the surgeon I feel like it is at a standstill.  It makes me nervous to just be waiting for something to happen.  I know this can be tricky.  My body has already showed that my liver is at least 5 times the size it is supposed to be.  I don't want to wait until other complications come along that make it impossible for them to do this surgery.  I want a chance to get better.  I want a chance to live.

There's a crushing feeling on my skull and chest.  It's like someone is standing and has their hands pressed on either side of my skull trying to crush it.  My chest feels like when I stand someone is pressing against me trying to push me down.  The only way to relieve this is to lay down.  That doesn't always work, but it helps some at least.  My legs feel heavy like there are weights and bricks in them.  I am also starting to worry about my bone health.  My right hip is really hurting today and so it the right knee.

I want to know what lesson I am supposed to be learning from all of this.  I certainly don't want to think that I am going through all of this for nothing. So, there must be a lesson that I am supposed to be getting.  Slow down and enjoy life more? Don't judge people by how they look because you don't really know what they are going through?  All good lessons, but is that it or is there some greater lesson?  I just want to know.

I want to get better. I want my strength and health back so I can start living again.  I want to take my children for walks, clean my house, teach my husband how to fish (LOL), and do the little things that are normally taken for granted.  I want to take a shower without it exhausting me and taking over 45 minutes for a basic shower.  I have to take a nap after I take a shower because it is so exhausting. 

Adrenaline rushes are one of the worst symptoms I have experienced so far.  They make my heart race, I get very red, breath very heavy, hard to catch my breath, get very weak, shaky, cold, have difficulty with everything.  I never know when they are going to hit, but when they do there is only one thing I can do.  I go lay down, get covered up, and wait for them to pass.  I have to really concentrate to try to get control of my breathing, once I get control of the breathing I usually go to sleep.  I can sleep from 30 minutes to a couple of hours, it just depends on how bad the rush was.

Feeling a little better now. Finally got a call from the surgeon in St. Louis, Missouri.  I go see him for a consultation on July 31.  Two more weeks to wait, but at least it is an appointment.  He is the only surgeon in the state that can do this surgery.  Since my liver is 5 times the size it's supposed to be then I have to have my adrenal gland and tumor removed through my back.  I am very nervous about it, but am hoping this surgery will go and be successful so I can recover.

It's hard to not get discouraged. I'm trying my best but the medical community is frustrating me greatly right now.  I know between the Cushing's Syndrome and the tumor on my adrenal gland that I will die if I don't have surgery.  I don't know when, but I know that Cushing's is fatal without treatment.  Yet it doesn't seem like the doctors are in any hurry to get me my appointment in St. Louis so we can get this tumor out and I can start my recovery process.  Knowing that my liver is 5 times the size it is supposed to be scares me.  I know that is not good and is really hard on my body.  My weight is continuing to go up also no matter how much or how little I eat.  I eat to survive and that is about it.  My taste buds are off and food doesn't taste good.  My blood pressure and blood sugar numbers are still messed up since the surgery attempt.  I don't know what they did to me while I was in the hospital, but it has screwed up all the progress I was making.

My family and friends continue to be a source of strength for me.  They are praying for me and helping me.  I am very blessed with the people I have in my life.  I will continue to pray and bother the doctors until I get the appointment and surgery and treatment that I need.  My motto is "Never, Never, Never Give Up." So, even when I am discouraged I remember my motto and carry on.

So here I sit still waiting for my follow up appointment.  I went to the hospital and got a copy of my operative report today.  I learned that the doctor tore my liver in a small place but was able to cauterize it.  Funny that was never mentioned to me or my family.  I would think that would be important information I should have been told about.  This whole process just gets more frustrating all the time.  I know the surgeon tried his best to do this surgery, but feel many things went wrong that we were not told about.  It still has not been explained as to what happened or why it happended that I ended up on the ventilator for several hours.  No matter now many times my husband or daughter ask what happened, no one would tell them.  That doesn't make me feel very good because it feels like they are trying to cover something up.

My body feels heavy.  I feel like lead.  My arms, legs, chest, everything feels like I am being weighted down.  I have been trying to do more though.  I have been getting up more and trying to move around more.  It just takes so much energy and so much out of me to do so.  I know I look healthy.  To look at me, I look like nothing is wrong with me except that I am grossly overweight.  If people look at me they think that I just need to lose weight and I would be fine.  As my surgeon told me after I got out of surgery, "You are not this way because you sit around eating bon bons. You are this way because you have a serious disease that has made you this way. We need to get this tumor out of you so you can lose weight and get better."  It made me feel better to hear someone say that.  At least that he has done right.  He understands and knows.  It felt validating to have him say that also.  Like I don't have to be ashamed of my size because it really is NOT my fault.

I know this is a long road.  I have gained 100 pounds and I was already overweight.  I just want my health and life back and really can't wait to get started.  I want to be able to go for walks, play in the park with my kids, go on picnics, camping, fishing, clean my house, and do all the "normal" things people usually complain about.  I want to do those things because I miss being able to.  One of these days I am going to be able to complain about them also.  I look forward to that.  I also look forward to continually loving my family and taking care of them like they have and are taking care of me during this whole ordeal.  I couldn't do it without my support system.  My husband, kids, and my mom are the biggest supporters I have right now. I love and appreciate them so much for all they have done and are doing for me.

I am really frustrated today.  I went back to surgeon for checkup.  They were supposed to have my referral information for the surgeon in St. Louis.  I am anxious for this information because this is supposed to be the only surgeon in Missouri that can do this surgery the way I have to have it done.  No appointment set up yet.  I called the surgeon in St. Louis office and they say they still don't have all the information they have requested. Doctors office here says no information has ever been requested.  I feel like I am chasing my tail again.  So, I called surgeon's office, who is the referral office, and ask them to find out for me where everything stands and let me know what information is needed so I can get the ball rolling and get this appointment.  I will call them back tomorrow to find out what needs to be done.  I am going to keep on them to make sure this gets done.  I don't feel I can afford to wait much longer.  If my liver is already 5 times the size it should be, I can't wait forever for them to decide what needs to be done.  Something needs to be done NOW....

I am also frustrated because I am finding out bits and pieces about my hospital stays.  I guess the nurses where questioning my mental stability and if I had a reason to be fearful at home.  I guess they also questioned Joe on if I was suicidal.  This seems odd to me.  Why would I go into the hospital to have a surgery to save my life and get my health back if I were suicidal and not mentally stable?  I don't understand this.  But hearing this certainly made some of the things they were saying to me last Tuesday make more sense.  They were asking me the same questions. If I had a reason to be fearful and didn't feel safe at home.  I thought it was odd at the time.   But having been under anesthesia and all the emotional stress of not having the surgery go as planned, I just chalked the weird questions up to me not really understanding what they were trying to say.  I am just really curious as to what they thought I was in the hospital for.  I had a surgery that was not completed and then they tried to wake me up too quickly while I was still under way too much anesthesia.  This was not me trying to do something strange and unstable.  This was not my fault.  They are the ones who was botching up my health.  How dare they question my mental stability.  I am going to get my medical records to see if I can piece together more of what really happended since they would not answer any of our questions as to why I ended up on the vent.

Today has not been a good day. No particular reason. I have just felt crappy most of the day.  I was able to convince Joe and the kids to go do something outside of the house.  I feel guilty for ruining their summer.  I can't really do that much and so they stay at home, inside so much of the time.  I want them to be able to get out and live life.  Life is so short and precious.

I called my doctor in St. Louis yesterday to try and figure out when I get to go there and continue my journey.  They called me back and seem like it is going to be a really good experience with this doctor and his staff.  They are still waiting on test results from my endocrinologist here and then they will set appointments up.  Since they know I will be traveling a ways, they want to get everything set up and try to do it on the same day to minimize travel and expenses for me.  I really appreciate that.

I'm surprised that my body is not more sore than it is from the surgery.  I guess since they didn't get to do much, it didn't cause much pain that way.  It has however, cause new symptoms.  I cannot lay flat at all now.  I have trouble breathing if I do.  I have to lay elevated, at an angle.  It is tricky to try and find the right position to sleep in now.  I got tired of the nurses and staff at the hospital continually asking me if I wear a CPAP at home.  They kept telling me I needed to be tested for sleep apnea.  Funny thing is I didn't have trouble breathing while I was sleeping, or anytime for that matter, until after my surgery on Monday. So maybe the fact that I coded and they had to bag me and put me on a respirator has something to do with my breathing issues now? I know I'm not a medical professional, but just maybe that is the problem and not sleep apnea??

My liver is 5 times the size it is supposed to be.  That scares me.  I know that is not good.  Especially since they say it is because it is absorbing the excess chemicals that the tumor is putting off.  It's supposed to go gradually go back to normal size after the tumor is gone.  Everything hinges on the tumor being removed.  My body cannot start healing until the tumor is gone.  It is so frustrating for me.  The tumor was supposed to be gone already.  It was supposed to be a relatively simple procedure that was to be completed Monday.  Now, it's nearly a week later and I still have the stinkin' tumor and the same symptoms and new ones.  I want the healing process to start.  I want to be able to do things with my husband and children.  I want to do simple things like tying my own shoes or getting dressed without it wearing me out.  Taking a shower without help is a dream of mine now.  Sad, but true because it takes so much effort for me to do everything, including little tasks, anymore.

This is me in the ICU about 6 hours after my attempted surgery on July 2, 2012. I was glad to be off the ventilator and lucky to be alive.

This is my wrist.  The red dot is where they had a monitor in my artery and was monitoring my blood pressure with every beat of my heart.  It made for one pretty bruise.

Today was another interesting day in my journey. I woke up with my feet and legs swelling.  I immediately put a call in to my surgeon.  After being on hold for about 10 minutes, I was told the doctor wanted an ultrasound of my legs to make sure I didn't have a blood clot.  So, I called my mom and she came in and took me to the doctor.  It took an hour for the ultrasound, but in the end they said no blood clots.  This was good news.  I was told to just elevate my feet and legs and the swelling should go down.  Unfortunately, this has not worked yet and in fact they seem to be getting bigger at times.  But, I will continue to follow medical advise and elevate.

I have my follow up with my surgeon next Tuesday.  I guess I am going to have to call my specialist in St. Louis to see when my appointment will be there.  I am concerned that when I looked up general information about him I learned that he specializes in endocrine cancer.  I don't know if this is an indication that they feel I have cancer also, or if it is just a coincidence.  Only time will tell for sure. 

I think Monday has really messed with my brain and mental state.  Going in for what was supposed to be a "routine" surgery where I woke up in the recovery room and then went to a regular room was flusterating enough.  To actually wake up in an ICU room on a respirator was terrifying to me.  I could hear people talking around me, but it was very difficult to open my eyes and keep them open.  It was also a very weird sensation to have something down my throat and in my lungs that was actually breathing for me.  I don't know if I will ever be able to fully shake that feeling.  I just kept mouthing "what happened" because I couldn't understand what was going on.  It makes me even that much more nervous about this next surgery.

So my journey took a small detour on Monday.  I went in for my surgery and it was not successful.  The doctor put 4 incisions in and attempted the surgery.  My liver was in his way.  It is 5 times the size it is supposed to be because of all the chemicals my tumor is letting off. So, the surgery was stopped.  Of all the surgeries my surgeon has done, he has never had one he could not complete himself.  This is a first for him.  They took the breathing tube out of my throat and woke me up to talk to me about the surgery.  I was still under too heavy of sedation and I coded on them.  They had to rapidly put another breathing tube in and bag me to get me back.  They then stuck me on a vent for a while.  I woke up in ICU on a vent and as quickly as I could convinced them to get the vent out.  I was on oxygen the rest of the evening into Tuesday.  I was sent home, straight from ICU, on Tuesday.  I still feel like crap, but am getting better.

Since my surgeon could not do this surgery, I am being referred to a specialist in St Louis, Missouri at Barnes Jewish Hospital.  It is the only surgeon in the state that my doctor knows can do this surgery.  My surgery has to be special.  My adrenal gland and tumor will have to come out through my back, instead of through the side.  I am nervous about this but at least I can still move forward with recovery.  It just sounds like it might be a little longer than I originally anticipated.  I looked up information on my new specialist and he was voted Best Surgeon in America last year.  Good to hear that I have the best doctors taking care of me.  I have to call tomorrow for a follow up with my surgeon and to find out details about my appointment in St Louis.  It will be next week.

I am thankful for life. Thankful for my friends and family and all the prayers I know are coming my way.  I am especially thankful for my husband and oldest daughter, Sabriana.  They were there asking questions and figuring things out for me when I couldn't do it for myself.  I love them so much and just wish they didn't have to go through this.

This was me December 2010

Me in January 2011. I was overweight but still felt like I looked ok.

This was me on December 31, 2011.  Still searching for a diagnosis at this point.

This was in August 2011

This was me December 31, 2011. Side view really shows how much weight I have gained.

Notice my lovely moon face.

Me in smaller days. January 2011

In doing research I have learned that 10 to 15 people out of every million are diagnosed with Cushing's per year.  Of those, only 2 out of every million get it because of an adrenal gland tumor.  Most cases are from pituitary gland tumors.  I have a 4.6 cm adrenal gland tumor on my right side.  I am fortunate that it was only on one adrenal gland.  Now I am just praying that it is not cancerous and that this surgery will take care of my problems. 

Cushing's has taken a lot from me.  Besides the physical symptoms of the weight gain of 100 pounds (last time I weighed I was around 335 pounds), dizziness, lightheadedness, high blood pressure, diabetes, confusion, shorter memory, memory loss, stiff and sore muscles, limited and decreased mobility, my independence (I have to have help doing even simple tasks now), and the list could go on and on.  The thing I miss the most is the simple things.  I miss going to the park and playing with my kids, shopping, cleaning house, working, and just being able to go for a walk without it being a real struggle.  Also the freedom to not be in constant physical pain. 

I look forward to doing the simple things again.  I know this is going to be a long and slow process but I look forward to the challenge.  I am very scared of it also.  I don't want something to go wrong and my kids to lose another parent.  As my 9 year old tells me, "then I would be an orphan Mommy and I don't want to be an orphan."  This hurts me to think that in my kids short lives (they are 17, 9, and 5) that they have suffered so much and have so many fears.  They have dealt with their grandfather and daddy both dying.  They have a couple of other relatives that are very sick and it scares them.

I am very scared about the outcome of my surgery, but I know without it the results are definate.  Without this surgery, Cushing's will end my life.  So, I face it and will move forward.  I am scheduled for surgery tomorrow morning.  I will get up early and be at the hospital by 5:30 am.  I will try to keep up with my blog to let everyone know how I am doing.

I have been overweight most of my adult life.  I was diagnosed with PCOS in July of 1999 and have had problems with my health on and off.  Looking back now, the flags that should have went up first started in 2008 after my dad passed away.  He had been sick for a couple of years and losing him was extremely hard.  After he died, I started having bad insomonia and vomiting a lot.  I chalked it up to grief.  I threw myself into work and tried keeping busy to keep my mind off of my loss.  In July 2009, my husband Jimmy was diagnosed with Stage 4 Kidney Cancer. The next two and a half months were filled with doctors visits, treatment, stress, and confusion.  September 11, 2009 Jimmy was put in the hospital for pain managment.  He never left the hospital. After many complications he lost his battle with cancer on October 17, 2009.  This left me a single mom to our 3 wonderful children.  The insomonia got worse and so did the vomiting.  I was vomiting after every meal, but not losing weight.  My weight stayed the same.  This seemed kind of strange to me, but I figured it was all part of the grief.  I also started having migraines on a regular basis.  It was more common for me to have a migraine than to not have one.  I existed and did what I had to do to raise my kids and live my life from day to day.

In January 2011 I did something I didn't think was possible.  I met and fell in love with a wonderful man.  Joe came into my life when I really needed him to.  He was a blessing to both me and my kids.  I got pregnant and we were both overjoyed to think of bringing a new life into the world.  That joy didn't last long.  I suffered a miscarriage February 24, 2011.  It devastated both of us, but we picked up the pieces and moved forward.  I ask my doctor why the miscarriage happened and was told "it just wasn't meant to be." 

I started gaining weight rapidly after my miscarriage.  I weighed 244 pounds and had for several years.  My weight would fluctuated as I tried to get healthier, but mostly stayed at 244.  My weight started going up by at least 5 pounds a month.  I started eating healthier, walking more, and trying to be more active but the weight kept gaining on me.  I also started noticing blurred vision, lightheadedness, nausea, muscle stiffness, loss of strength, dizziness, and many other symptoms that didn't seem right.  I chalked them up to my PCOS and went on with life.

I was happy and in a loving relationship again.  Joe and I got engaged and I started planning our wedding.  We set the date for August 6, 2011 and so I was busy getting everything ready.  The most exciting part was going to buy a wedding dress.  I made my dress the first time around because I was so embarrassed by my size.  I decided to love my body and myself for who I was and went and bought a dress.  I loved my dress and it made me feel like a princess.  I bought it about a month before the wedding.  I tried my dress on a couple of weeks before the wedding and it wouldn't fit anymore.  I had gained so much weight it would not zip.  I panicked because I certainly didn't have enough money to buy another dress.  I ended up customizing the dress myself by ripping out the zipper and putting in a corsette back on the dress.  My weight kept going up.  By this point I had gained around 50 pounds without explanation why.  Our wedding day was beautiful and hot.  Joe and I were married with our children by our side and family and friends gathered around us with record breaking temperatures outside.

During the next several months I gained more weight, continued having symptoms of other medical problems and in September was pregnant again.  I was excited but apprehensive this time.  I didn't want anything to go wrong.  I set up my doctors appointment and went for my ob visit on October 5 I made my journey to the doctor.  They did a urine test and then bloodwork and confirmed to me that I had suffered another miscarriage.  I ask why my body was doing this and why was I gaining so much weight.  By this point I looked like I was pregnant with twins and had gained over 80 pounds.  The doctor had no explanation for me.  She said I would need to ask that question to my regular physician.  So, I looked and found a family physician and went to see what my medical problems were.  After several times of going to her, having bloodwork done and then having her tell me to "wait and see" what happened I quit going.  She had no new explanations and thought I should be happy that my weight had went to only gaining 1 pound a week.

In January 2012, while on a trip to Jefferson City with Joe and the kids I started experiencing chest pains.  We immediately returned home.  The pains did not subside so I went to the ER.  They kept me overnight for observation of a possible heart attack.  I kept having this crushing feeling in my chest and neck.  My heart stress tests showed my heart was in wonderful condition.  The only thing they were worried about was the fact that my heart rate was very fast, even at rest.  The attending doctor told me I was just a fat girl and needed to lose weight.  If I would just do that I would be fine.

I was finally able to get in to see the doctor who had taken care of my dad the last couple years of his life.  This is a doctor I knew and trust.  I know that when there is a problem he will take care of it or refer you to someone who can.  My first visit with him was in March 2012.  He came into the room and ask me what he could do for me.  I told him honestly "I want my health back."  My doctor listened to me and all of my symptoms and then he examined me.  He observed my legs were still relatively skinny and that my weight was mostly contained in the upper part of my body.  He also observed the hump on my back and skin discoloration that I had not noticed.  He ask me if I had ever heard of Cushing's.  I had because my oldest daughter had been tested for it in December 2011.  Luckily, her tests had come out negative.  I had high blood pressure which I was immediately put on medication for and I had bloodwork done to check and see what was going on with me.  The next week the doctors office called and said I needed to be referred to an endocrinologist for further testing.

It took a couple of weeks to get into the endocrinologist.  There was more bloodwork and a 24 hour urine test.  The first of the bloodwork was suspicious, but because I was on medicine for PCOS it may not be correct. So I stopped taking those medications.  Within 2 weeks of not taking those meds I was diagnosed as diabetic and my labs were looking like I did have Cushing's.  Back on medication now for diabetes and high blood pressure I had two 24 hour urine tests to do now.  A week or two later the results were back and it was confirmed I had Cushing's.  I had a CT scan of my adrenal glands and they were able to find a 4.6 cm tumor on my right adrenal gland.  The scan was not able to deteremine if the tumor is cancerous or not.  I was referred to a surgeon for the removal of the gland and tumor.  My surgery is scheduled for July 2, 2012.

My name is Tammy and I am 39 years old.  I was recently diagnosed with Cushing's Syndrome as a result of an adrenal gland tumor.  This blog is going to follow my journey through surgery and recovery.  I am trying to educate people about the real battle with a rare disorder.