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.