Advise for those waiting

What would I tell others trying to be diagnosed?

Yes. The BIG question... What to tell someone else who is trying to be diagnosed? That is the million dollar question. I have some very basic advise, but I hope it helps at least one person. First, I would say to make sure you have told your doctor every symptom you are having. Don't think that they just want to hear about the ones you think are major problems. They need to know about every last symptom. Sometimes it's the simple things that are bothering us that alone they don't mean anything, but when they happen together it is something major going wrong. My first husband went to the doctor for a sore throat, after a lot of tests and a biopsy he came out diagnosed with Stage 4 kidney cancer. He died two and a half months after being diagnosed. He was 36 years old. When he went to the doctor many times he would tell them about his sore throat, his cough, the pain in his side and how it woke him up at night, his nausea, him losing a lot of weight all of a sudden, or just feeling like he was choking. But he never told him about all of these symptoms at once. Separately, it looked like he had a virus or a bug of some sort. Together, it amounted to symptoms to look for something more serious, like cancer.

Second, I would say to trust yourself. When you are going through these tests and you get some normal results don't worry or doubt yourself. There have been many of us that have gotten normal results on some tests for one reason or another, but we trudged forward and ended up getting the Cushing's diagnosis. My endo told me to always trust myself. I know my body better than anyone else. I even know how to treat myself better than most ER doctors. I usually end up telling them what medicines to give me and what tests to run.

My tests had come back normal ranges when I was testing for Cushing's and my endo thought there was no way I had it then.  I ended up talking to my him and going off most of my medications for a week or two before my body had cleansed itself of the meds and how they helped regulate some things in my body. After my body was cleansed and when they re-tested and low and behold, my tests came back out of ranges and indicating I had Cushing's Syndrome. It also showed that I had high blood pressure and diabetes. 

Believe in yourself. You know your body. You know when something is not right. You know better than anyone possibly can. So, don't give up. Stick with it. Change your doctor if the one you have won't listen to you or take you seriously. Good Luck and Good Health.

•In what ways have Cushing’s made you a better person?

This is an easy question for me to tackle. Cushing's has made me a better person in many ways.  I now have learned how to slow down and not take life for granted. I enjoy doing laundry, making beds, folding clothes and putting them away, washing dishes, all the little things that I used to complain about. I know it sounds absolutely crazy, but I felt worthless when I couldn't do those things. At least I know if I am doing those things that I am contributing to my family. I want to be a contributing member of society. The little things I can do make me happy. Even bathing myself is an accomplishment that I am very proud of. I had gotten to the point, at a very low time in my life, that I couldn't bathe myself. I had to have someone do that for me. And then, even with someone else doing the work, it wore me out. I ended up taking a 2 - 3 hour nap because I was so tired.

I used to take walking for granted. I ended up in a wheelchair and discovered just how hard life can be if you are confined to a wheelchair. People were very judgmental and hostile towards me when I was in the wheelchair. I remember going to a zoo with my kids and the devil. The devil was pushing me in the wheelchair as we looked at the exhibits. I had several people walk into me and then got mad at me. They crowded me out of areas, I got dirty looks, and just very rude behavior towards me. I was astonished at this treatment. It really made me realize how judgmental society is. I know that most of the dirty looks and judgmental attitude I got were not the result of me being a wheelchair. They were the result of me being as overweight as I was. At my highest weight I was able to weigh, I was 395 lbs. That not something I'm proud of, but I'm not ashamed of it either. The reason I'm not ashamed is because I tried for over a year to get help. I went to doctor, I ate healthier and smaller portion, and I exercised. I did what I was supposed to do. It wasn't my fault that I was that overweight. I had a terrible, deadly disease that could have killed me if it had gone untreated for much longer. I wasn't sitting on the couch eating bon bons and watching tv. I was working and doing things around my house, and walking and living my life. You can't just judge someone because of the size they are or the way they look. You never know what battles they have fought or are currently fighting. There are so many invisible disabilities that people have. Things that are absolutely crippling that people are fighting every day of their lives. They don't give up, they fight like hell. And what do they get in return, when they go into society they are harshly judged. I used to be one of those people doing the judging, but not anymore. I learned from Cushing's what life can do to you and you have no control over it.  I am not judgmental anymore. I know that everyone has a story and unless you know their story, you have no right to say a thing about that person.

I take my time to enjoy every little thing in life. When my kids are happy and celebrating some victory, I celebrate it with them. I wrap those memories up and keep them close to my heart because they won't be little for long and I've already lost a few  years.  Here's the surprising thing, when my kids are bad... they may be disobeying, or throwing a fit, or just being downright mean... I cherish those times also. Don't get me wrong, I still punish them and correct their behavior, but I also cherish the lesson that I am able to teach them. I do this because I know one day when they are grown up and and out on their own I'm gonna miss all those moments. So I don't sweat the little stuff and most of it is little stuff. I can't afford to sweat it. I'm diabetic in addition to having Cushing's. Stress is bad for both diseases. It can hurt you and your health extensively. So I get some weird looks from my kids some time when they just know I'm going to yell at them and instead I say, "I love you." and leave it at that.

I am better because I'm me. I have been through the battle and I am winning. I have almost died 5 times, but I didn't. There is a reason for me to be alive and I'm searching for that reason. In the meantime, I am going to try to spread the word that Cushing's is a horrible disease. It takes over your life and destroys life as you knew it. But, if you try hard enough, you can rebuild your life and be an even better person than you were before... My final thought on this, Don't judge people. You don't know what battle they may be fighting. You don't know their story. They may have an invisible illness or disease and you just don't have a right to belittle this person and make them feel even worse. Have some empathy and smile and if you must say something, tell them to  have a nice day....

April 1, 2015... accepting the challenge

I have accepted the challenge to participate in the Fourth Annual Cushing's Awareness Challenge. This is a challenge for me to blog every day in the month of April. There are a variety of topics and questions that were kindly provided to give me some inspiration. April 8 is Cushing's Awareness Day and also is Dr. Harvey Cushing's birthday. So, Challenge accepted... here goes .....

My challenges with Cushing’s:

I have had many challenges as the result of having Cushing's. When I first noticed symptoms I was having, everything really happened rather quickly. I would have pains in my feet that made them hard to even walk. I started getting weak, aching muscles. Insomnia started to be a regular thing. Sitting and watching tv or reading a book I would suddenly break out in full body sweats like I had just run a marathon. I had trouble breathing. More frequent head aches, some severe Migraines. I would get so sick from my migraines that I would be vomiting. I remember one day I was going home from work and I had such a bad migraine I could barely see. I took all the back roads that were less traveled to be safer while I was driving. What was normally a 20 minute drive took me three hours to get home. I came in the door, went straight to my bedroom, and collapsed for the rest of the night.

Little things started happening.. like I would be checking books for damage at work and suddenly I couldn't hold onto the book. I would end up dropping it. Or I noticed that I wasn't as fast at checking things in as I used to be. My muscles were sore all the time. I saw floaties in front of my eyes. I was dizzy most of the time. And the worst of all was the weight gain. I had started eating healthier and working out because I was feeling pretty good about my prospect in life at that point. I was walking 4 - 5 time a week and eating lots of salads and fresh veggies. It didn't make sense. I was gaining weight very quickly. I gained over 50 lbs in about four months. I started going to the doctor then. I knew something was wrong. There was no way I could gain that much weight and not have some kind of medical issue.

I guess you could consider that my first major challenge... Getting the doctors to listen and take me seriously. My doctor suggested blood work to see if any abnormality could be identified. Labs came back with red and white blood counts off. They were "suspicious" but we would just wait a few weeks and then try again. Maybe my body was getting over some kind of infection that I wasn't aware of. So, we waited and retested... Same result... "suspicious" red and white count. They shouldn't be this off... the doctors words, not mine. But again we repeated the tests over and over and over again. My symptoms were still there. Gaining more weight. I was gaining from 3 - 5 lbs per WEEK. That's right.. not monthly but WEEKLY. The final straw came for that doctor when I went to her for yet more labs and I was expressing my frustration. By this point I had gained over 100 lbs in about 8 months time. I was morbidly obese and closing in on some major medical issues because of my weight. I knew I couldn't survive much longer like this. The doctor told me that I should be celebrating. At least I'd only gained 2 lbs that week. That was it for me. I went home, found the number for my dad's doctor, and called and made an appointment with him. It was several months out, but at least I would have a good doctor finally.

Going to my new doctor turned my life around. Dr. H is absolutely amazing. He suspected Cushing's from the time he laid eyes on me. We got to work with labs and a few days later I was being referred to an endocrinologist. Over the course of the next 8 months I would go through many horrific tests, try having needles stuck in your body, especially in your skull and they shoot electricity through them. But in the end, on October 31, 2012 I finally had a successful surgery and came out of it alive. I had many more challenges as we went. By this point I was not able to walk, I used a wheelchair to get around. I could not bathe myself, it was too tiring. I had to have help and then ended up taking a nap for 2 or 3 hours after because it wore me out so much. I couldn't do laundry, dishes, make dinner, or anything. I was pretty much bed ridden. I could sit up and talk, a little. But even that wore me out. I spent most of my time sleeping. It was so frustrating to me.

I was missing out on so much of my kids lives. From parent teacher conference to school plays and performances, I was missing it all. Sure, someone would record it for me... but let's not kid ourselves.. it's not the same. I was increasingly sick, getting new diagnosis all the time. I had spent a good portion of my time of 2012 in and out of the hospital for testing, a failed surgery, a successful surgery, and some various illnesses.

December 25, 2012.. Christmas morning and my kids, the devil, and I were all gathered in our living room opening Christmas presents. The kids were having a blast and very excited about the gifts they were unwrapping. I had unwrapped one present. Then, this feeling came over me and I knew I needed medical help. All I could do was look up at my so-called husband at the time aka the devil and say "Help Me."  He looked and me and ask what was wrong. I just kept saying "Help Me. I need help. Help Me." And then I passed out. 911 was called and the ambulance arrived. I have a cloudy memory of that. For the most part it felt like an out of body experience. Like I was watching my life play out in slow motion. I was rushed to the hospital. I have pneumonia, respiratory distress, and a few other complications. I was in the hospital for about a week to 10 days with that episode. I would say that I spent about 98% of 2013 in the hospital. No joke. I have the medical records to back me up on this one. Every major holiday, non major holiday, family birthdays, and even just your run of the mill days, I was in the hospital. All the nurses throughout the hospital at Cox South in Springfield, Missouri know me now. The only floor I haven't been on during this illness is the maternity floor.  Almost all the doctors and nurses in the emergency room there know me also.

I have gradually gotten better over time. Throwing the devil out and filing for divorce last year helped me so much. The divorce frees me up from that sick entanglement. I am rid of him. My health has gotten so much better since he left.  I now walk on my own, with occasional assistance. But I can walk. My kids and I walked to the park that about a mile from our house a few weekends ago. It was amazing. Had been years since I had done that. We played for several hours and then walked home.

I can do dishes, laundry, bathe myself. Still get tired occasionally, but am still able to stay awake. I'm just aware that I am tired. I have gained so many illnesses since being diagnosed with Cushing's Syndrome. And now, we test again. I have started having some of the symptoms again. Breaking out in full body sweats when I am just sitting and reading.  Sore, weak muscles. Joint pain. and worst of all... weight gain, AGAIN. I had lost a little over 100 lbs after my surgery and was almost back to my original weight. I was so proud of myself. Now I have gained between 45 - 50 lbs back. So, my endo is tapering me off my hydrocortisone. Then, after I am totally off of it for a week, we do labs to see where my numbers are. He suspects I might have another tumor.. here we go again, another challenge to beat.....

Testing... Testing...

It's been a few years since I went through my journey of testing for Cushing's Syndrome. I remember the anticipation, fear, worry, horror, and just the jumble of emotions I was feeling at the time. I went through a number of doctors before I finally found someone who cared. A doctor who actually practiced medicine and wanted to find out what was wrong with me and help me get better. My primary care doctor figured out what was wrong with me the minute he walked in the room and saw me. We just had to jump through all the hoops and do all the testing. He ran blood tests, called within a couple of days and I was referred to an endocrinologist. My initial blood work showed a tumor of some sort in my body.

I was referred to the endo and we started testing.  I had previously been diagnosed with PCOS and pre-diabetes many years before the doctors suspected I had Cushing's Syndrome. I was put on Metformin at the time to help control these issues. I was still taking it.  When I was in the process of testing for Cushing's many of my tests were coming out in the low to normal range, especially my cortisol readings. I refused to let my endo delay me further in getting some kind of diagnosis. I had cried myself to sleep too many times. I was gaining weight at an alarming rate. I couldn't give up once I had finally found something that made sense. Something that I could get fixed. Something that would let me have a light at the end of my tunnel.  I ask my endo if it were possible that the medications I was on could be affecting my lab results.  He said there was a possibility. We discussed this at length and agreed to take me off all my medicines so my body would have a "normal" or "clean" result. I was supposed to be off all meds for a month but it took less than two weeks to have my blood sugar shoot up 600+. I was hospitalized to stabilize my blood sugar and my other tests were re-ordered. This time they came out pretty much by the book for Cushing's. My cortisol tested very high. So I finally had my answer. I still had to take the dex suppression test. I failed it. I was finally diagnosed with Cushing's.  Now, to figure out if it was a pituitary or adrenal tumor.  The blood test I had taken at my primary care doctors office had indicated an adrenal tumor. So, I was sent for an MRI of my abdomen.  I made sure to tell the technician that they were checking for a tumor on my adrenal glands.  I had already told my endo that they were going to find a tumor on my right adrenal gland. I even told him that I could pinpoint for him exactly where the tumor and adrenal gland were located at that time.  I had been having excruciating pain in my right side that would wake me up from a deep sleep.  It had started out happening maybe once or twice a month.  It was now to the point I could barely sleep.  I woke up numerous times a night in agonizing pain.  I even tried to sleep sitting up to see if that would help.  Trying to relieve as much pressure as possible from my back. 

Finally, the MRI results were in.  My endo called me personally, on a Saturday that he was NOT on call. He was supposed to be off. But, he knew I was anxiously awaiting my results, so he called me to say they were in. He knew I had access to my online records. He advised me to sit down, read over the test results, do the research he knew I would be doing, and then he scheduled an appointment with me for the following week so we could go over the test results in person. He said if I had any questions before that to feel free to call and ask him.  I went home immediately and read my results. Right side adrenal gland tumor. They could not tell if it were cancerous or not. They did recommend surgical intervention to remove the adrenal gland and tumor.  Finally, after all this time, I had a light. It wasn't real bright, but it was there.  I still had a lot to figure out and a lot to go through, but at least I knew which direction I was headed.

I tell this story just to let you know if you are in the testing stages of anything medical, don't get discouraged or give up.  You know your body better than anyone else does.  Discuss with your doctor any possibility that medication you may be taking could affect your test results. Try to look at all angles to figure out what your problem might be.  Good Luck and Good Health to all. I hope you find the answers you are looking for.

Life in general

It's hard when you have a disease to concentrate on life in general. Everyday life is no longer "normal" for you. You have to refocus your thoughts and energy to fighting this disease you have. When you have multiple chronic illnesses it becomes even more stressful. Having problems like diabetes, Cushing's, and sleep apnea, for example, require you to focus on what you eat, how you go through your day, medication, insulin (if needed), time management (crucial to planning meals and medicines). Something as simple as what time you eat, take your medicine, check your blood sugars, etc. become very important. It really can change the outcome of your day and how you feel in general.

It's very hard to plan a day ahead of time. You can't really make long distance obligations. If you do, you must make sure everyone involved in those plans know that you may have to cancel at the last minute. Having these diseases you really do have to live day to day and moment to moment. I can be totally fine, happy, up and moving around one minute and sick, vomiting, body aches, maybe my blood sugar is off, maybe I have a cortisol rush the next minute and I feel like crap. Or the reverse can happen. I have actually cancelled plans because I felt like crap and then was able to regulate medicines and insulin enough to get better and make it to an event after all. 

It's important to have a support system in your life. I used to have a strong, loving support system. Or so I thought. Stupid me. I now have a select few people who are VERY close to me and offer support on a daily basis. I have my mom. She is my blessing. She is my friend. She takes care of me. I admire my mom for all she has been through and that she is still living on her own, functioning, living a productive life. I also have two of my kids... My 12 year old daughter and 8 year old son. They love mommy very much and they are here for me. They understand my illnesses, my medications, and my craziness. They know what to do when mom gets sick. They take such good care of me. It sounds strange, but it was very refreshing a couple of weeks ago. They were both sick and I was the healthy one. It was strange but I loved being able to take care of my kids and get them well. That's the way it's supposed to be. Mom taking care of kids, not the other way around. Not at the age they are anyway.  Then, you have my oldest daughter. She isn't supportive at all anymore. She told me that all I can do is talk about my health and how bad off I am. I am a "waste of her time and breath." That was a fine slap in the face to hear. But, I respect her opinion as her own. She is entitled to think and feel however she wants. So, I also respect that she wants nothing to do with me now. It hurts, stings, burns, is very sad. But I respect it and I go on with my life. It's her loss. I will always be here and always love her. I pray that one day she will speak to me again and we can have a healthy relationship. Only time will tell.

I have become more active in some of my Facebook Groups. I really enjoy talking to my fellow diabetics and Cushies. They are wonderful to talk to because we all understand one another. Who better to truly understand you then someone who actually walks a mile in shoes like yours? They may not have exactly the same problems because everyone is different. But it's close enough. They KNOW what you are going through. We can talk and vent and help one another. Support systems are important. In becoming more active I have come up with a catch phrase I like to end my posts with.... Good Luck and Good Health to you all.

Slow going......

My kids have been out of school for a week. Monday, March 16 is the last day of Spring Break and then they return to school. First, I can't believe the school year is going so fast. Second, I can't believe they are growing up so fast. Third, I hate the way I have been feeling. My blood sugar has been uncontrolled. I have had several lows during the week. It has really shocked me. I'm used to the highs. That is what I usually run. Anywhere is the 400 - 500 range is what my body and I are used to. Then, I was finally able to get those numbers down and under control.  They were actually running from 120 - 170. I know the 170 is high, but not nearly as high as it had been. So, I was happy. We were headed in the right direction. I started having more energy. My chronic pain meds were changed. I was taken off Fentanyl patch every 3 days and morphine every 4 hours for break through pain. My pain management doctor changed me to Butrans patches one a week and Suboxone strips every 12 hours. It is a work in progress. But the pain is a lot less in my lower back and all over in general. So, I have been able to get up and be more productive. Cleaning house, doing dishes, doing laundry, just doing "normal" everyday tasks that I couldn't always do anymore. It has been wonderful. Then, a routine trip to the grocery store for some things turned into a nightmare when I crashed. I have had two such grocery store nightmares now. So, I've learned that even something as mundane as grocery shopping IS considered exercise and you must check blood sugar levels before attempting this.

Why is my life so upside down? I'm scared to do things again. I want to be safe and I certainly don't want to be out somewhere with my kids and crash. That would be frightening for all of us. I'm sure my kids would be able to get help and they would know what to do. But it would also scare them being in public and having to rely on strangers for help. Besides, I've scared them enough when I have gotten sick, I don't need to add to it. I'm very scared of doing things. Even something as simple as walking to the park. I want to be more active and I told the kids we would walk to the park. We live real close to one so it wouldn't be a far off venture. I just haven't felt real good and I want to avoid getting sick on our walk. I know I'm going to have to get over this fear. I need to make the kids lives as normal as possible. I already feel their life is stifled by me because I am a single, diabetic, Cushing's mom. This is a hard role to balance. But I will do a little more research, get a little stronger and braver, and take the kids for that walk. Slow does the trick. I will try to be as relaxed as possible and not push myself too hard. That should keep my symptoms under control and my blood sugar in a good range.

Checking in with the doctors.....

I keep regular appointments with my doctors. I see them very often. Fortunately, I have been doing well enough that I see my family doctor about once every three months. My endo is a little more complicated. I had worked up to where I was only seeing him every six months as long as I check in and see his Physician Assistant every two to three months. That was when I was doing better. In the last few weeks to month my blood sugar has decided to not stay in control anymore. I think this is due, in part, to my activity level increasing. My pain management doctor put me on a new medicine. I am on a Butrans patch that I change once a week and I also take Suboxone twice a day. It is a strip that dissolves under my tongue. So, pain is under better control and I am up and functioning more. It is liberating to be able to stand for longer periods and do my dishes or laundry or even be able to take a shower without needing a nap afterwards. I still get tired, but not as tired and not for as long. I am finally making progress.

Now comes the trouble. Since I am up and moving more my blood sugar has been all over the place. First it will be too high.  So I will take my insulin, drink my water, and do some household chores or go to the store. Then, I crash!!! Grocery shopping is an absolute nightmare because I have crashed the last two times I have went shopping. It has been a disaster. Luckily, my mom and kids are with me so they save me. But my numbers keep bouncing up and down and all around. I have to find some way to get this under control again. In addition to this I am having new symptoms. I can be totally awake and with it one minute. Then next minute I am out like a light. It's been happening to me a lot at night. Then I will wake up again and be fine. I will be dizzy and my head feels weird, but otherwise fine. I've also been having seizure like symptoms when my bs numbers get too low. I certainly hope I'm not starting to have diabetic seizures. I guess only time will tell.  I've also started gaining weight again, but just in my middle. I've had an increasing numbers of headaches and migraines lately. Blurry vision, or barely being able to see sometimes also scares me. I hope I'm not having a recurrence of Cushing's. I'm trying to move forward and get better. NOT take steps backwards and get worse or new illnesses.

I start therapy next week. I hope it will help me work through issues that I have. I am also hoping I can learn some relaxation techniques so I'm not so stressed all the time. Getting help with my anxiety attacks would be another good thing. I'm looking forward to a bright, beautiful life. March 26th I have three very important appointments. I see my eye doctor at 9:30 am. I will have my diabetic checkup and see what is going on with my eyes. Maybe he will be able to see if there is a real problem or just some symptoms when my numbers are screwed up. At 11:15 am I will see my family doctor. I will talk to him about excessive bleeding in my stools again. Not all the time, but enough times to worry me. I will also talk to him about the dizziness and light headedness. Then, if he doesn't have the answers for me, I will be seeing my endo at 2:00 pm that day. I'm hoping by the end of the day I feel better by at least having some answers. Figuring out what is going on with my body will be a big relief.

My kids and I are looking toward the future. I have a new man in my life. He is a career Army man. Has been in the Army for 28 years. He is currently stationed in Turkey doing some work against terrorism and ISIS. We talk online through messenger and emails. We have quickly become friends and enjoy talking about the future. Our hopes and dreams have a lot in common. We enjoy a lot of the same things and dream about most of the same things for our futures. I believe this is the beginning of a beautiful relationship.

Starting Over

I have had a lot of bad things happen to me over the years. I could do one of two things, let it define and defeat me OR let me re-define myself and conquer and succeed. So, I start over... Re-define who I am and what I want to do with my life.

First, I am a single mother of 3. Yes, one is out on her own and engaged to be married. I'm still here for her. If and/or when she ever needs me. I know she doesn't want to be around me right now. I will leave it all in Gods' hands to protect her and guide her. Hopefully one day He will guide her back to me.  In the meantime, I have two more kids to raise. My 12 year old daughter and my 8 year old son are fabulous. I love them so much. It's strange to say, but I even enjoy when they are fighting. It means they are alive and I am here with them. They will grow up and be out on their own soon enough. I cherish every moment I have with them.

Second, I am still here for a reason. I want to find out what that reason is. Is it to help other children out who have had similar experiences to my kids? Is it to help educate people about Cushing's, Diabetes, and other illnesses? I will figure it out. Then I will be able to be a contributing member of society. I like making a difference and helping people. I want to continue my education and help others. I want to let the world know what Cushing's Syndrome is and how it affects people.

Third, educating people is a passion of mine now. The constant ache, like you have just started working out and you get sore muscles. That is a light example of how the pain feels. Or like you've been run over by a fleet of semis. Just that constant body ache. The decreasing muscle strength. I used to be able to do a lot more than I can do now. I can't always open a new jar or bottle. I have to have help or work extremely hard to open things. Even picking things up is limited. I can't always hold onto things. They drop out of my hands and I don't always know they are dropping. I lose feeling and sensation in my hands and arms sometimes. If I walk for too long, or even just up on my feet, I feel like lava is running up and down my legs. It burns me. There are needles in the lava and they stick and burn me. Even just feeling a light breeze or a light touch absolutely send me into a fit because it hurts so bad. I can't stand for too long or sit for too long. If I sit for too long my legs and body will stiffen up. It's hard to move then. I feel like I'm in slow motion trying to do anything sometimes. You can be feeling ok and then one wrong move and it's over. You feel like curling up in a ball and crying. Only if you curl up in a ball, it hurts worse.

One thing I haven't gotten used to is involuntary stretches. This happens when my body decides to stretch on it's own and I have no control over it. I can't stop it no matter what I do. This HURTS!!!! It's not a fun stretch, not something I want to do. It doesn't relieve stress. The involuntary stretches can come at anytime and last from a few seconds to a few minutes. The longer they last, the more they hurt.

I get to start over. Fresh start. I want to be fun, loving, caring, funny, wonderful, contributing, knowledgeable, sympathetic, and healthy. I am working on my health. I have my pain somewhat under control now. Thanks to my pain care doctor. He is fabulous and has helped me so much. Now I am working on my diabetes and getting better control of my blood sugar numbers. I'm hoping if I can do that maybe some of my weight will start coming off. That's one of the things that is so hard for me. The weight. I've had a weight problem most of my life. I admit that. But now, to the degree that it is, it is because of the Cushing's. People don't understand that I don't sit around the house eating all day. Some days I don't eat at all. Or I eat ice chips. Those are the days that my gastroparesis or  pancreatitis are acting up. Or I just may not have an appetite at all. It's a complex world of food and drinks. I have to examine and dissect everything I want to eat or drink to see how it will affect my body.  Will it go against one of my many diagnosis? I have certain places I know I cannot eat, no matter what I order. I cannot go to Taco Bell or Domino's. I miss them, I crave them, but I cannot eat them.

But I will turn my life around and make a difference. My thoughts are all over the place right now because I am thinking about so much at once. This is a new chapter in my life. A time for change. A time for better. This is my time.

Insomnia... The sleepless nights that never end......

Insomnia is one of the wonderful things I have experienced on a whole new level with Cushing's. It keeps me up nights and many mornings also. I have had times when I couldn't sleep for a couple of days. I survive on naps of 30 - 45 minute intervals. I have done some great things with my time though. I have read books, update my blog, think up a million and one things I should be doing instead of just searching the internet for something exciting. My mind goes a million miles an hour at night. I know I should be sleeping and I even feel guilty because I'm not. I monitor my blood sugar and stress about not sleeping. Many doctors say you should get 7 - 8 hours of sleep at night in order to have more energy and feel refreshed. I'm tired all the time, so why can't I sleep. It's because my freakin' body is going 90 miles an hour. I have a constant "high" going on. My body is stuck in fight or flight mode.

I had my surgery Oct. 31, 2012. Yet somehow my body doesn't understand that. They removed the tumor and my right adrenal gland. My body doesn't believe it. It tells me it won't accept it. I still have "highs" and my heart rate is still high. A normal heart rate before my surgery was anywhere from 150-180. It has slowed down now. On a good day it is between 80-95. On a bad day it is 100-150. I have to talk to my endo about this when I go to my next appt. in a couple of weeks. My left adrenal gland never started working again and I am on 40 mg of hydrocortisone twice daily. This is the only way I can function. I know other people are able to taper off and that is great, for them.... For me, we have tried time and time again to taper me off. When we get below what I am currently taking, my body gets mad at me and fights back. I end up in the hospital for a week or more at a time. It's not pretty. I get really sick, really weak, and really tired. This is the times when the only thing I can do is SLEEP. It's about the only time I get regular sleep. But then sleep is all I do at those times.

So, it seems like I am stuck with the dilemma.... to sleep or not to sleep.... That is MY question.

Diabetes is evil.......

I had a pretty good day. I cleaned my house thoroughly... Something I haven't been able to do in a very long time. Before my surgery the thoughts of cleaning my house were merely a dream. I couldn't do it. My body hurt too much and I was in way too much pain. I have slowly built myself back up to where I can do it though. My body still aches from the fibromyalgia and other problems I have, but it is tolerable now. I so enjoy cleaning house now. I know that sounds strange, but I appreciate all I can do now. It means I am alive and actually living my life. Pain or no, I am moving and able to do things.

My blood sugar was really strange yesterday. stayed in the 100's or below all day. It was controlled or so I thought. I went to my son's grade school performance last night. It was a really cute performance. Multiple songs about making good choices. All the kids did a really good job. 2nd and 3rd graders are very cute. Anyway, I went grocery shopping afterwards. I had just started out in the store and I started sweating profusely, shaking, confused, head ache. I knew what was happening. Sent my daughter to the register for a Coke and a candy bar. Tested my BS and it was 70. For me that is low and I start having bad symptoms. Got the Coke and candy bar down. Got finished shopping as quickly as possible. Hard to checkout while you are crashing I found. Made it home. Put away groceries. Ate some protein. Got the kids ready for bed and passed out myself. Thank God for my mom. She was here with me and stayed the night to help me. I am so blessed. She is my rock and a wonderful support system for me. Pretty much the only support system I have left. Of course, I have friends and family. Just not many of them that know the extent of my illnesses nor have they been there for me like my mom has. She is there for me every step of the way. I love my mom so much. We have had our differences throughout my life, but whenever the chips were down she has ALWAYS been there for me.