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.