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.