So, I have been having some bad episodes lately. My blood sugars have been going extremely low. This has caused me to pass out a few times. I hate when this happens because I don't remember what happens during this time. My kids are well trained on these situations by now. They know to call their grandmother (my mom) whenever this happens. They tell her whatever is happening and she comes to our house to help the kids while I am "out of it". This happened this past week and I guess it really scared the kids. My blood sugar went down to 51. That is the lowest it has ever went. I guess this led to my son having a panic attack and he started to "stress eat" as he tells me. I couldn't quite figure out what he meant when he told me this. He said he just started eating and couldn't stop. He was eating anything and everything he could, even though he wasn't hungry. We are working through this problem. He is in counseling so and I made sure it was discussed with his counselor. I guess my 12 year old daughter was a real inspiration during this time. She remained calm and tried keeping my son calmed down while taking care of me. I am so proud of her for that. She is really maturing.
It is amazing to see how much my children have had to mature because of me. They are growing up so fast and getting very mature. They know how to handle many difficult medical situations now. We are also working on an emergency plan for any kind of situation they can think up that they aren't sure of what to do yet. They always want to be prepared and for that I am very proud of them.
My daughter advised my son to just relax and know that mom would be ok. God is taking care of all of us so she knew we would all be ok. Very smart girl. I'm so proud of her.
Friday, April 24, 2015
Tuesday, April 14, 2015
What Cushing's Syndrome is to me...
What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
Cushing's Syndrome and Disease is different but also has so much in common. By definition that I have found Cushing's Syndrome is caused by adrenal gland tumors. Cushing's Disease is caused by pituitary tumors. There are also slight differences in symptoms, but that also depends on the person. Each person has their own set of symptoms, so will be like the "norm" and other will be strictly to that person.
So, what is Cushing's to me? I have Cushing's Syndrome. I had an egg size tumor on my right adrenal gland. Luckily, I was able to have surgery to remove said tumor. On the bad side, it is starting to really look like my left adrenal gland is not functioning at all. I have been trying to wean off of my hydrocortisone for several weeks now. I have gotten down to 10 mg in the morning and 10 mg in the evening. This is not going well for me. I feel like I am so weak. My body is starting to ache worse than before, from head to toe. I see spots and black dots in my line of vision. My pain meds are not working as well as they had been and the pain is starting to be intolerable again.
Cushing's is much more than just the symptoms to me though. It has robbed me of my life. Before Cushing's I was an active, happy, friendly, tolerant, wonderful, funny, average attractiveness woman. Now, since Cushing's has ravaged my body I am not the same, nor will I ever be the same, again. I am not active anymore. I do very little activity anymore. I used to go grocery shopping, go to the occasional doctors appointment, worked at the Library Center and absolutely adored most of my co-workers and patrons at the library. Now, I go out often, but only because I have to for all the vast number of doctors appointments I have now. I only go grocery shopping if absolutely necessary. I have found the joys of online shopping. It is so much easier than going out in public. At least this way I don't have to interact with others. I make myself go out more than I want to. I feel like as long as I can make myself occasionally interact in public than I will be ok. I have a psychologist and am working on my problems. I am on disability now. Disabled by the many diagnosis that I have now. It is a vast list. What started out as one or two things has led to about 20+ diagnosis and things that are now wrong with me. I don't laugh as much as I used to. I take everything way to seriously now. I don't let myself truly be myself anymore. I am a shell of the person I once was.
Worst of all is the damage this disease has done to my children. They are scared so much of the time because of me and my illnesses. They are always on guard, always watching to make sure I'm ok. They don't want anything happening to me. They are scared of me getting sick again and having to be hospitalized. I have been so sick and hospitalized way too much over the last 3 years. Now, my kids won't be totally honest with me. If they have problems, they don't feel comfortable sharing that with me because they don't want to add stress to me. They know stress can be deadly for me. They just want to keep me healthy, so they hide problems from me and act like things are good. But secretly they are in pain and hurting but not sharing that. They are scared I will die and then I won't be here for them. That is so sad and I just feel like it crushes my heart to know I have caused so much pain for them. I want them to be able to be young and carefree. Not so scared and worried and protective of me. I just them to be themselves, to be able to act their ages, and to come to mommy when they need me. Instead, they are protecting and taking care of me. This has got to chance. Cushing's has stolen my life and replaced it with a shell of the person who once was....
Cushing's Syndrome and Disease is different but also has so much in common. By definition that I have found Cushing's Syndrome is caused by adrenal gland tumors. Cushing's Disease is caused by pituitary tumors. There are also slight differences in symptoms, but that also depends on the person. Each person has their own set of symptoms, so will be like the "norm" and other will be strictly to that person.
So, what is Cushing's to me? I have Cushing's Syndrome. I had an egg size tumor on my right adrenal gland. Luckily, I was able to have surgery to remove said tumor. On the bad side, it is starting to really look like my left adrenal gland is not functioning at all. I have been trying to wean off of my hydrocortisone for several weeks now. I have gotten down to 10 mg in the morning and 10 mg in the evening. This is not going well for me. I feel like I am so weak. My body is starting to ache worse than before, from head to toe. I see spots and black dots in my line of vision. My pain meds are not working as well as they had been and the pain is starting to be intolerable again.
Cushing's is much more than just the symptoms to me though. It has robbed me of my life. Before Cushing's I was an active, happy, friendly, tolerant, wonderful, funny, average attractiveness woman. Now, since Cushing's has ravaged my body I am not the same, nor will I ever be the same, again. I am not active anymore. I do very little activity anymore. I used to go grocery shopping, go to the occasional doctors appointment, worked at the Library Center and absolutely adored most of my co-workers and patrons at the library. Now, I go out often, but only because I have to for all the vast number of doctors appointments I have now. I only go grocery shopping if absolutely necessary. I have found the joys of online shopping. It is so much easier than going out in public. At least this way I don't have to interact with others. I make myself go out more than I want to. I feel like as long as I can make myself occasionally interact in public than I will be ok. I have a psychologist and am working on my problems. I am on disability now. Disabled by the many diagnosis that I have now. It is a vast list. What started out as one or two things has led to about 20+ diagnosis and things that are now wrong with me. I don't laugh as much as I used to. I take everything way to seriously now. I don't let myself truly be myself anymore. I am a shell of the person I once was.
Worst of all is the damage this disease has done to my children. They are scared so much of the time because of me and my illnesses. They are always on guard, always watching to make sure I'm ok. They don't want anything happening to me. They are scared of me getting sick again and having to be hospitalized. I have been so sick and hospitalized way too much over the last 3 years. Now, my kids won't be totally honest with me. If they have problems, they don't feel comfortable sharing that with me because they don't want to add stress to me. They know stress can be deadly for me. They just want to keep me healthy, so they hide problems from me and act like things are good. But secretly they are in pain and hurting but not sharing that. They are scared I will die and then I won't be here for them. That is so sad and I just feel like it crushes my heart to know I have caused so much pain for them. I want them to be able to be young and carefree. Not so scared and worried and protective of me. I just them to be themselves, to be able to act their ages, and to come to mommy when they need me. Instead, they are protecting and taking care of me. This has got to chance. Cushing's has stolen my life and replaced it with a shell of the person who once was....
Sunday, April 12, 2015
My thoughts for the day....
I've been thinking a lot about my first round with Cushing's a lot lately. My endocrinologist has me tapering off of hydrocortisone in order to re-test me and see if I have another tumor and if I have active Cushing's again. From the way things are going so far, it appears that my left adrenal gland is not waking up and starting to work at all. It should have started working long before now. I'm really worried about what might be happening inside of me. I don't want to go through this all again, but the symptoms are there again. I have sweating spells where I am drenched in sweat for no reason. I can just be sitting on the couch, not doing anything and this will happen. I have noticed muscle and joint pain and weakness getting really bad again. My weight is going up for no apparent reason. I'm not eating bad. In fact, I have gotten my blood sugar under control finally and sometimes my problem is going too low instead of too high. I have been getting more active because I was feeling better and had improved pain relief. Now, that isn't true anymore. I am really tired and in a lot of pain again.
What will happen to me and my kids if I have Cushing's and another tumor AGAIN??? I don't have a huge support system anymore. I don't know how I will do it this time. I'm scared for all of us. My mother is terrific and does so much for us already. I know she would do anything in the world for us. I love her so much. I want to be the one being there for her. I want to be well enough to take care of her. I don't want to be sick anymore. I'm sick and tired of being sick and tired.
Some days you just have "one of those days". You know, the kind of day that no matter what you do it doesn't seem like things go right at all? Well, I feel like that today. Most of the things I have tried today have been bad. My daughter is still sick. We have to go to a couple of doctors and work out treatment plans for her. We have to get her better. I have to be able to take care of her and see her through this difficult time in her life. My son is still sick also. After his first allergic reaction last week, we have had to watch what he eats very closely. We have his Epi pen, just in case another allergic reaction happens. We are waiting on his appointment with his pediatrician to refer us to an allergist. Then we can figure out exactly what he is allergic her. I have to be here for him. I have to get him through this. This is my job as his mother and my extreme joy and pleasure to help him get better. My mom has also had some medical problems that I need to be there for her. She has done so much for me and been there for me so many times. It the least I can do to be there to support her. I love my mom and my kids so much.
I don't have time to have Cushing's take over my life again. This just can't be happening again. So, my final thought for today.... Please pray for us all. Thank you.
What will happen to me and my kids if I have Cushing's and another tumor AGAIN??? I don't have a huge support system anymore. I don't know how I will do it this time. I'm scared for all of us. My mother is terrific and does so much for us already. I know she would do anything in the world for us. I love her so much. I want to be the one being there for her. I want to be well enough to take care of her. I don't want to be sick anymore. I'm sick and tired of being sick and tired.
Some days you just have "one of those days". You know, the kind of day that no matter what you do it doesn't seem like things go right at all? Well, I feel like that today. Most of the things I have tried today have been bad. My daughter is still sick. We have to go to a couple of doctors and work out treatment plans for her. We have to get her better. I have to be able to take care of her and see her through this difficult time in her life. My son is still sick also. After his first allergic reaction last week, we have had to watch what he eats very closely. We have his Epi pen, just in case another allergic reaction happens. We are waiting on his appointment with his pediatrician to refer us to an allergist. Then we can figure out exactly what he is allergic her. I have to be here for him. I have to get him through this. This is my job as his mother and my extreme joy and pleasure to help him get better. My mom has also had some medical problems that I need to be there for her. She has done so much for me and been there for me so many times. It the least I can do to be there to support her. I love my mom and my kids so much.
I don't have time to have Cushing's take over my life again. This just can't be happening again. So, my final thought for today.... Please pray for us all. Thank you.
I don't know if I've learned how...
How do you cope?
This is a very good question. I have no idea some days how I make it through and cope. I just take my time week by week, day by day, hour by hour, minute by minute, or moment by moment. It's how you live life in general. You do what you have to for survival and to make it through good times and bad. Good times, of course, are easier at make it through. Bad times, are much harder.
Before, I had family and friends to rely and lean on. That support helped me immensely to make it through. It didn't seem as daunting with a good support system. I think that is something essential to coping and making it through this horrible disease. I don't have that system any longer. Many of the people have turned their backs on me. It's been too long for them. They don't believe I could possibly still be sick. So, I lost that strong support system. Now, I have myself and a few select people who are still there for me. I have learned that I have to be my best support system. I've learned you can rely truly, 100% rely on yourself. Others can always let you down or turn on you. But you yourself will always be there.
I have learned to that doing things that I enjoy will relax me and help me cope during some of my tougher times or pain. I have learned to craft and do loom caps and scarves. I really enjoy this activity and can do it for hours. It gets my mind off my own worried and onto something more hopeful. I want to get good enough that I can start donating my caps and scarves to the hospital or maybe the cancer society. Somewhere that it can help people out.
I have also learned to cope by realizing that even though this disease is horrible, there are people who go through much worse. There are people in more pain, in more despair, in a more daunting experience. I am very lucky. I, by the grace of God, wake up each day and can be thankful that I am alive. I am recovering and feel better most days. On the days I don't feel so good, then I am thankful that I am alive to feel bad.
Never, never give up is my motto I live by. Coping just has to be something I do because I will not allow myself to give up.
This is a very good question. I have no idea some days how I make it through and cope. I just take my time week by week, day by day, hour by hour, minute by minute, or moment by moment. It's how you live life in general. You do what you have to for survival and to make it through good times and bad. Good times, of course, are easier at make it through. Bad times, are much harder.
Before, I had family and friends to rely and lean on. That support helped me immensely to make it through. It didn't seem as daunting with a good support system. I think that is something essential to coping and making it through this horrible disease. I don't have that system any longer. Many of the people have turned their backs on me. It's been too long for them. They don't believe I could possibly still be sick. So, I lost that strong support system. Now, I have myself and a few select people who are still there for me. I have learned that I have to be my best support system. I've learned you can rely truly, 100% rely on yourself. Others can always let you down or turn on you. But you yourself will always be there.
I have learned to that doing things that I enjoy will relax me and help me cope during some of my tougher times or pain. I have learned to craft and do loom caps and scarves. I really enjoy this activity and can do it for hours. It gets my mind off my own worried and onto something more hopeful. I want to get good enough that I can start donating my caps and scarves to the hospital or maybe the cancer society. Somewhere that it can help people out.
I have also learned to cope by realizing that even though this disease is horrible, there are people who go through much worse. There are people in more pain, in more despair, in a more daunting experience. I am very lucky. I, by the grace of God, wake up each day and can be thankful that I am alive. I am recovering and feel better most days. On the days I don't feel so good, then I am thankful that I am alive to feel bad.
Never, never give up is my motto I live by. Coping just has to be something I do because I will not allow myself to give up.
Thursday, April 9, 2015
My life in chaos
Stress is bad for Cushing's patients. It can literally make you sick. I have had so much stress this week that it has affected my health. Sunday I called the ambulance for my 8 year old son who had an allergic reaction to Milk Duds.
After a few hours at the ER we went home. Wednesday my 12 year old daughter was admitted to the hospital because she was wheezing and having trouble breathing. Another ambulance ride. She got out of the hospital this afternoon. We were home about 3 hours. She was having trouble breathing again so another call to the ambulance. This has all affected my health. I'm exhausted all the time. I shake for no reason. Trouble sleeping even though I'm exhausted. Migraine headache. I could go on, but I'm too tired. Hope you all take care of yourselves. You are important.
Wednesday, April 8, 2015
I blog about my health because
This is going to be a short post. My daughter is in the hospital, so I am staying with her. I blog about my health because I want to educate people about Cushing's and hopefully make it easier for someone else to get diagnosed. Doctors need to be educated by those of us suffering from this disease. People need to be taught to stick up for themselves. Be their own advocate. Make the doctors listen and do the right tests to diagnose this horrible disease.
Living with this disease is bad enough. It's time to educate the people to fight for themselves. Maybe then they can get treatments they need.
Tuesday, April 7, 2015
Challenges & Victories
5 Challenges & 5 Small Victories.
What would life be without challenges and victories along the way? It would be dull and we never would learn anything, never grow as a person. So, even though the challenges and victories are sometimes hard fought and hard won or not they all make life worth living. So over the course of time, while I have been dealing with my journey that has become bigger than I ever imagined. Here are the top 5 challenges and small victories I have encountered.
My Challenges:
#5 Family turning on me I have been sick for four years now. Before this I was perfectly healthy and happy. Living life and learning a new normal. Things were falling into places and things were looking up. Then I got sick and I had a lot of family that supported me. They were all there for me through the tests, surgeries, comas, hospitalizations, sicknesses, etc... But now it's been four years and I've had my surgery so it's time I get over myself and get on with my life. I was told that all I ever talk about is being sick and my illnesses. It's really not that big a deal, but I am making it more of an issue than it needs to be. I was even told by a very special person that I was a waste of their time and breath. Wow, I'm not even worth the breath she wastes talking to me. That's sweet. So, people have pushed me out of their lives because I still have a lot of medical issues. Some are Cushing's related and some are the result of many other illnesses I have now. Oh well, time marches on and so do I.
#4 Being Sick and Hospitalized : After my successful surgery on October 31, 2012 it seemed like everything started to really fall apart. I started ending up in the ER and hospital more than ever in my life. I knew it would be a challenge getting better from my surgery, but I had no idea that everything started falling apart in my body. I spent more time in the hospital than at home. This was very tough for me and my kids. I didn't see my children very much. They had school and other activities. I was an extra trip to go visit with, so they were not allowed to visit me much. They wanted to, but it was just not allowed.
#3 Getting Diagnosed: Once I found a doctor who would actually listen to me I started working on building my personal medical team. Doctors who cared and would listen to me. But also doctors who knew what they were doing, so they knew the hoops I needed to jump through in order to be diagnosed. So many tests, labs, 24 hour urines, blood work, MRIs, CTs, Ultrasounds, you name it and there is a good likelihood that I have been through it. My endocrinologist kept telling me that it would all be worth it in the end. And it was. After all the tests were finally done I was diagnosed with diabetes, high blood pressure, and Cushing's Syndrome. They had found an egg size tumor on my right adrenal gland.
#2 Finding a doctor who would listen to me: I had been going to a group of doctors for years when I first started having symptoms. They were not interested in doing anything about my new symptoms. Just kept telling me it could be because I was so stressed out having lost my dad and my husband within the two years previous. Since they wouldn't help me I searched for a new doctor who would listen and figure out what was wrong with me. I found a couple of doctors who would act like they were going to help me at first and then it turned out they were just in it to get as much money as they could out of me. I went through four or five doctors before I finally found the one who would listen to me. He ran the blood test and referred me to an endocrinologist. After that, my medical team was on the way to being built and it had the right doctors finally. Some that cared and got results. I know if I had listened to the first few doctors I saw I would have never pursued actually getting diagnosed. So many doctors would tell me that my tests came back normal so there was nothing wrong with me. I refused to accept that because I knew something was wrong.
#1 My first attempted surgery and me flatlining after: July 2, 2012 is a day that will forever live in my mind and memories. That is the day I went in for my first attempt at removing my right adrenal gland and tumor. This was supposed to be an easy surgery. "No big deal." "We'll be in and out in no time." these are the things I doctor said to me. Then I was wheeled off to surgery. I remember making it to the operating room and moving over to the surgical table. Then I started counting backwards and it was lights out. I woke up several hours later with something down my throat that was breathing for me. Turns out that my liver was five times the size it's supposed to be because of my Cushing's. The surgeon couldn't find my adrenal gland. They woke me up in the operating room and told me what the new plan was and why I couldn't have my surgery that day. I was supposed to have said I understood and then I fell back on the table and flatlined on them. They had to revive me, put me on a ventilator, and wheeled me to ICU. Which is where I was, waking up on a ventilator. That was a very scary moment for me. I had four other times over the next two years that I almost died and ended up on a ventilator in ICU, clinging to life.
My Victories:
#5 Being able to go places: I know this may sound strange to some, but just being able to go places and go in. Like going shopping at the grocery store or Wal-Mart, etc... that is something I had missed so much. I went for around a year and a half without going shopping or hardly getting out of the house at all. I didn't even go out to check the mail. I stayed in my house and slept, a lot. And when I wasn't sleeping I was going to the bathroom or eating. I was hardly awake long enough to visit with my kids and see how they were doing.
#4 Losing Weight: During the prediagnosis time for Cushing's I was putting on a lot of weight very quickly. I gained approximately 151 lbs. in about a eight months time. It was terrifying to me that I was gaining this weight while eating healthy and walking daily. I was eating tons of salads and whole grains. I had cut out soda and sugary drinks from my diet and was drinking a lot more water and occasional juice. But the weight kept coming on. After my successful surgery in October 2012, I started losing weight immediately. I lost 30 lbs the first month. It was coming off quickly. It was aided in coming off by my bouts of gastroparesis and pancreatitis. Because when those flaired up I would end up on a "Nothing by mouth" diet for days and then it would be "Ice Chips Only" and after that I would finally graduate to "Clear liquids." This is not a diet that will put any weight on. It takes the weight off like crazy and I was enjoying it immensely. The first six months after surgery and I had lost around 80 lbs. I finally got 100 lbs off and I felt great.
#3 Walking to the Park with my kids: About three weeks ago I had a very exciting Saturday. My kids had been begging me for years to walk them to the park. We live about two blocks from the park, so it didn't seem like a big deal to them to walk over there. It was a beautiful, sunny day. I told the kids to pack a lunch in our backpack and we would go to the park. We set out on our journey and I actually made it to the park. We sat and ate our food and then the kids played for three hours. It was so wonderful to be able to sit there and watch them play. They were so excited and full of life. We finally packed up and went home. It was harder on my journey home because I was tired from being out for so long, but I made it home. It was a major victory for me. It had been over three years since I had been able to do something like that. It felt fabulous.
#2 Successful Surgery: October 31, 2012 finally arrived and I was in St. Louis, Missouri waiting on the only surgeon in the whole state who could perform my surgery without killing me. He is a wonderful doctor and surgeon. He knows about Cushing's because he has several Cushing's patients. I was feeling scared and goofy that day. Fear had taken over and I was very happy to see I had a purple outfit to put on with a bear on the top and purple socks that looked like bear claws. So, I was able to kinda dress up like a bear for Halloween. That made me laugh. It's a blurr what all happened before my surgery. I just remember being there at the hospital and then I woke up and my surgery was over. It was a success and they were able to remove the adrenal gland and egg size tumor. I was in pain, but the nurses took wonderful care of me. It was two days of recovery and then I was on my way home. It felt like a victory.
#1 I'm Alive!!!! As I mentioned previously, I have had several times when my health has majorly failed me and I have been barely hanging on to being alive. I have spent five times in the ICU on a ventilator and in a coma. Some were short stays of just a day or two. Some were longer stays with me being in a coma for three days before I started coming back around. Spent several days in the hospital after that and then I was released. But, even through all of the challenges that have come my way, I have faced them all and I'm ALIVE!!! I know that I have a greater purpose in my life or else I wouldn't have made it through all the times that I was so very sick. I am thankful every day that I am still here. I have had a successful surgery and I am proof that things can work out. I know that I will still face challenges and setbacks in my journey. But the one thing that I will always celebrate as a victory is the simple fact that I'M ALIVE!!!!!!
What would life be without challenges and victories along the way? It would be dull and we never would learn anything, never grow as a person. So, even though the challenges and victories are sometimes hard fought and hard won or not they all make life worth living. So over the course of time, while I have been dealing with my journey that has become bigger than I ever imagined. Here are the top 5 challenges and small victories I have encountered.
My Challenges:
#5 Family turning on me I have been sick for four years now. Before this I was perfectly healthy and happy. Living life and learning a new normal. Things were falling into places and things were looking up. Then I got sick and I had a lot of family that supported me. They were all there for me through the tests, surgeries, comas, hospitalizations, sicknesses, etc... But now it's been four years and I've had my surgery so it's time I get over myself and get on with my life. I was told that all I ever talk about is being sick and my illnesses. It's really not that big a deal, but I am making it more of an issue than it needs to be. I was even told by a very special person that I was a waste of their time and breath. Wow, I'm not even worth the breath she wastes talking to me. That's sweet. So, people have pushed me out of their lives because I still have a lot of medical issues. Some are Cushing's related and some are the result of many other illnesses I have now. Oh well, time marches on and so do I.
#4 Being Sick and Hospitalized : After my successful surgery on October 31, 2012 it seemed like everything started to really fall apart. I started ending up in the ER and hospital more than ever in my life. I knew it would be a challenge getting better from my surgery, but I had no idea that everything started falling apart in my body. I spent more time in the hospital than at home. This was very tough for me and my kids. I didn't see my children very much. They had school and other activities. I was an extra trip to go visit with, so they were not allowed to visit me much. They wanted to, but it was just not allowed.
#3 Getting Diagnosed: Once I found a doctor who would actually listen to me I started working on building my personal medical team. Doctors who cared and would listen to me. But also doctors who knew what they were doing, so they knew the hoops I needed to jump through in order to be diagnosed. So many tests, labs, 24 hour urines, blood work, MRIs, CTs, Ultrasounds, you name it and there is a good likelihood that I have been through it. My endocrinologist kept telling me that it would all be worth it in the end. And it was. After all the tests were finally done I was diagnosed with diabetes, high blood pressure, and Cushing's Syndrome. They had found an egg size tumor on my right adrenal gland.
#2 Finding a doctor who would listen to me: I had been going to a group of doctors for years when I first started having symptoms. They were not interested in doing anything about my new symptoms. Just kept telling me it could be because I was so stressed out having lost my dad and my husband within the two years previous. Since they wouldn't help me I searched for a new doctor who would listen and figure out what was wrong with me. I found a couple of doctors who would act like they were going to help me at first and then it turned out they were just in it to get as much money as they could out of me. I went through four or five doctors before I finally found the one who would listen to me. He ran the blood test and referred me to an endocrinologist. After that, my medical team was on the way to being built and it had the right doctors finally. Some that cared and got results. I know if I had listened to the first few doctors I saw I would have never pursued actually getting diagnosed. So many doctors would tell me that my tests came back normal so there was nothing wrong with me. I refused to accept that because I knew something was wrong.
#1 My first attempted surgery and me flatlining after: July 2, 2012 is a day that will forever live in my mind and memories. That is the day I went in for my first attempt at removing my right adrenal gland and tumor. This was supposed to be an easy surgery. "No big deal." "We'll be in and out in no time." these are the things I doctor said to me. Then I was wheeled off to surgery. I remember making it to the operating room and moving over to the surgical table. Then I started counting backwards and it was lights out. I woke up several hours later with something down my throat that was breathing for me. Turns out that my liver was five times the size it's supposed to be because of my Cushing's. The surgeon couldn't find my adrenal gland. They woke me up in the operating room and told me what the new plan was and why I couldn't have my surgery that day. I was supposed to have said I understood and then I fell back on the table and flatlined on them. They had to revive me, put me on a ventilator, and wheeled me to ICU. Which is where I was, waking up on a ventilator. That was a very scary moment for me. I had four other times over the next two years that I almost died and ended up on a ventilator in ICU, clinging to life.
My Victories:
#5 Being able to go places: I know this may sound strange to some, but just being able to go places and go in. Like going shopping at the grocery store or Wal-Mart, etc... that is something I had missed so much. I went for around a year and a half without going shopping or hardly getting out of the house at all. I didn't even go out to check the mail. I stayed in my house and slept, a lot. And when I wasn't sleeping I was going to the bathroom or eating. I was hardly awake long enough to visit with my kids and see how they were doing.
#4 Losing Weight: During the prediagnosis time for Cushing's I was putting on a lot of weight very quickly. I gained approximately 151 lbs. in about a eight months time. It was terrifying to me that I was gaining this weight while eating healthy and walking daily. I was eating tons of salads and whole grains. I had cut out soda and sugary drinks from my diet and was drinking a lot more water and occasional juice. But the weight kept coming on. After my successful surgery in October 2012, I started losing weight immediately. I lost 30 lbs the first month. It was coming off quickly. It was aided in coming off by my bouts of gastroparesis and pancreatitis. Because when those flaired up I would end up on a "Nothing by mouth" diet for days and then it would be "Ice Chips Only" and after that I would finally graduate to "Clear liquids." This is not a diet that will put any weight on. It takes the weight off like crazy and I was enjoying it immensely. The first six months after surgery and I had lost around 80 lbs. I finally got 100 lbs off and I felt great.
#3 Walking to the Park with my kids: About three weeks ago I had a very exciting Saturday. My kids had been begging me for years to walk them to the park. We live about two blocks from the park, so it didn't seem like a big deal to them to walk over there. It was a beautiful, sunny day. I told the kids to pack a lunch in our backpack and we would go to the park. We set out on our journey and I actually made it to the park. We sat and ate our food and then the kids played for three hours. It was so wonderful to be able to sit there and watch them play. They were so excited and full of life. We finally packed up and went home. It was harder on my journey home because I was tired from being out for so long, but I made it home. It was a major victory for me. It had been over three years since I had been able to do something like that. It felt fabulous.
#2 Successful Surgery: October 31, 2012 finally arrived and I was in St. Louis, Missouri waiting on the only surgeon in the whole state who could perform my surgery without killing me. He is a wonderful doctor and surgeon. He knows about Cushing's because he has several Cushing's patients. I was feeling scared and goofy that day. Fear had taken over and I was very happy to see I had a purple outfit to put on with a bear on the top and purple socks that looked like bear claws. So, I was able to kinda dress up like a bear for Halloween. That made me laugh. It's a blurr what all happened before my surgery. I just remember being there at the hospital and then I woke up and my surgery was over. It was a success and they were able to remove the adrenal gland and egg size tumor. I was in pain, but the nurses took wonderful care of me. It was two days of recovery and then I was on my way home. It felt like a victory.
#1 I'm Alive!!!! As I mentioned previously, I have had several times when my health has majorly failed me and I have been barely hanging on to being alive. I have spent five times in the ICU on a ventilator and in a coma. Some were short stays of just a day or two. Some were longer stays with me being in a coma for three days before I started coming back around. Spent several days in the hospital after that and then I was released. But, even through all of the challenges that have come my way, I have faced them all and I'm ALIVE!!! I know that I have a greater purpose in my life or else I wouldn't have made it through all the times that I was so very sick. I am thankful every day that I am still here. I have had a successful surgery and I am proof that things can work out. I know that I will still face challenges and setbacks in my journey. But the one thing that I will always celebrate as a victory is the simple fact that I'M ALIVE!!!!!!
Monday, April 6, 2015
Medication Information
The role my medication plays in my life.
When I was diagnosed with Cushing's and the many things thereafter, I went from taking no medication at all. Maybe an occasional Excedrin Migraine, but not much else. Now I take a multitude of medications. Each of them has their own purpose and without them all I wouldn't function like I do right now. My daily functioning has been increased greatly by these medications. They also have allowed me to get well and I can gladly say that I have not been hospitalized or even to the ER for my own health in the last few months.
Now the list and their purpose:
Apidra... This is my short acting insulin and helps so much. I have been on other insulins but my body got used to them and they didn't work anymore. Apidra is definitely the best insulin I have used. It has gotten my numbers down in the 100s range for the first time in a very long time. I take 90 units of this with meals and a sliding scale depending on my blood sugar levels.
Levemir Flextouch... First, I have to say how much I love, love, love the new flextouch pens. They are absolutely wonderful. Just dial up your dosage and push. It's so easy. Second, I will tell you that this is my long acting insulin. It works throughout the day and night to keep the blood sugar levels down over the extended period of time. I take 90 units of Levemir twice a day.
Bupropion Sr or Wellbutrin (as most people know it): I take this to help with my depression. I have a huge issue with depression and anxiety. I luckily have this under control with my medications that I take for it. One of the things that Cushing's gave me as a present was my depression and anxiety issues. I have had a lot of problems with anxiety and panic attacks. It is very intense when I have anxiety attacks. I can start crying and shaking for no reason at all. I worry about everything. Without the medication I get so depressed that all I want to do is sleep. I don't want to function in or be a part of society. I just want to sleep. My doctor recently added the wellbutrin to my list of medications in addition to my Cymbalta to see if it would help better. It seems to be working very well.
Duloxetine DR or Cymbalta: This is the medication that my doctor started me on when we identified that I had depression. It has helped me over the last few years, but lately my level of depression has increased. In addition to Cushing's and my other medical issues, I am going through a divorce, have painful family issues going on, and just life in general is stressing me out. So, that is why my doctor decided to also add Wellbutrin to my mix of meds. The two of these meds work very well together and make me feel so much better about life. I can function fairly well as long as I remember to take my meds.
Hydrocortisone: The drug I seem to not be able to get rid of. Of course, I started on hydrocortisone when my adrenal gland was removed. This helped me to come down from my high of all the hormones my body produced too much of all the time. I am currently taking 20 mg morning and evening. I am finally starting to wean myself off of it. The times in the past I have tried this have resulted in me being hospitalized, so I am praying that it works this time. Wonderful drug that gives me the strength and energy to make it through the day.
Probiotic: This is a nutritional supplement that an ER doctor suggested to me. I was having numerous bouts of pancreatitis and gastroparesis. The doctors cannot figure out why I got this issues. The only thing we can attribute it to is possibly the Cushing's messing up my body so much. This supplement has helped to greatly to be able to avoid the hospital, even when I have small bouts of these issues pop up.
Low dose Aspirin: This is to help with my heart health. Yes, another thing you can get because of Cushing's is heart problems. I am desperately trying to avoid them, but my family history is ugly with heart problems.
Trimethobenzamide or Tigan: This is my miracle drug. The worst bout of pancreatitis and gastroparesis I had resulted in me vomiting for over 36 hours straight. I was so dehydrated that I was dry heaving up stomach acids. It was exhausting me also because I was only sleeping in bouts of 10 - 15 minutes at a time and vomiting for about 30 minutes and repeat. The doctors had tried just about everything they could think of. The last hope was Tigan. If this didn't work I was going to have an NG tube. I did not want that. I prayed it would work. Luckily, the Tigan worked. I stopped vomiting and was able to get some rest. Whenever I get real nauseated I take the Tigan and it settles my stomach down.
Ondansetron ODT or Zofran: My other miracle medication to cease vomiting. One of these little beauties, dissolved under your tongue and it can keep sickness away. This usually works if I take one at the first feeling of nausea.
Ferrous Sulfate 325 mg or Iron: This helps me keep enough iron in my body. Another thing that Cushing's can do is deplete some of the vitamins and minerals that your body need. I have been admitted to the hospital and had to get IV iron and assorted other vitamins several times. So, now I have a prescription to try and keep my body replenished.
Vitamin D3: This helps with your immune health. Because of the Cushing's my immunity is deprived and basically sucks. With Cushing's and Diabetes to worry about any time I get sick, it is very hard on my body. So, I do all that I can to help my immunity out.
Vitamin C500 mg: Yet another vitamin to help my immunity out.
Metoprolol Tartrate: This medication helps out in a couple of ways. Because of the Cushing's I had an extremely high heart rate. I think at it's highest my heart rate was in the 180s. Metoprolol helps to slow down my heart rate to between 80 - 90. This is a much more acceptable heart rate. This medicine also helps with my high blood pressure. It has worked wonders and helped get the blood pressure under control.
Cicyclomine or Bentyl: this medicine helps with my stomach. It helps with indigestion and also with keeping my stomach working properly and stomach acids under control.
Pantoprazole or Protonix: This medication helps me with a couple of issues. It helps reduce stomach acids and helps with heartburn and acid reflux, both problems I had before I started using this. It also helps regulate the stomach acids and decreases the occurance of gastroparesis and pancreatitis. I have missed a couple of doses of this medication in the past and paid dearly with a horrendous case of gastroparesis. I have not missed a dose since.
Metformin: This is pill form to help keep blood sugar under control. It takes the medication and the insulin to help regulate my blood sugar.
Gabapentin: This is a wonder pill that helps with my diabetic neuropathy pain as well as my fibromyalgia. This pain can get pretty intense if left untreated. Luckily this medication works very well at alleviating this pain.
Butrans patch: I use the 20 mg patch once a week. It is a patch that I put on my back once a week to help with chronic pain in my lower back and body overall. I have 2 ruptured discs, 2 herniated discs, and degenerative back disorder, and arthritis in my lower back and my body. The Butrans patch helps me so much more than the Fentanyl and Morphine that I used to take for the same pain. I have become so much more functioning since starting the Butrans.
Suboxone: This is a strip that I dissolve under my tongue. It helps in conjunction with the Butrans patch to help with the pain. I still have pain, but we are still working on the right dosage of the Suboxone for me to take to get rid of as much pain as possible. This is a wonder strip. The instant the medication dissolves and goes into your blood stream it works instantly.
Each of these medicines help something in my body to work better and correctly. They help me be the person I am. A functioning, capable member of society . I still have pain and some issues, but with my medicines I am working on making a better functioning me.
When I was diagnosed with Cushing's and the many things thereafter, I went from taking no medication at all. Maybe an occasional Excedrin Migraine, but not much else. Now I take a multitude of medications. Each of them has their own purpose and without them all I wouldn't function like I do right now. My daily functioning has been increased greatly by these medications. They also have allowed me to get well and I can gladly say that I have not been hospitalized or even to the ER for my own health in the last few months.
Now the list and their purpose:
Apidra... This is my short acting insulin and helps so much. I have been on other insulins but my body got used to them and they didn't work anymore. Apidra is definitely the best insulin I have used. It has gotten my numbers down in the 100s range for the first time in a very long time. I take 90 units of this with meals and a sliding scale depending on my blood sugar levels.
Levemir Flextouch... First, I have to say how much I love, love, love the new flextouch pens. They are absolutely wonderful. Just dial up your dosage and push. It's so easy. Second, I will tell you that this is my long acting insulin. It works throughout the day and night to keep the blood sugar levels down over the extended period of time. I take 90 units of Levemir twice a day.
Bupropion Sr or Wellbutrin (as most people know it): I take this to help with my depression. I have a huge issue with depression and anxiety. I luckily have this under control with my medications that I take for it. One of the things that Cushing's gave me as a present was my depression and anxiety issues. I have had a lot of problems with anxiety and panic attacks. It is very intense when I have anxiety attacks. I can start crying and shaking for no reason at all. I worry about everything. Without the medication I get so depressed that all I want to do is sleep. I don't want to function in or be a part of society. I just want to sleep. My doctor recently added the wellbutrin to my list of medications in addition to my Cymbalta to see if it would help better. It seems to be working very well.
Duloxetine DR or Cymbalta: This is the medication that my doctor started me on when we identified that I had depression. It has helped me over the last few years, but lately my level of depression has increased. In addition to Cushing's and my other medical issues, I am going through a divorce, have painful family issues going on, and just life in general is stressing me out. So, that is why my doctor decided to also add Wellbutrin to my mix of meds. The two of these meds work very well together and make me feel so much better about life. I can function fairly well as long as I remember to take my meds.
Hydrocortisone: The drug I seem to not be able to get rid of. Of course, I started on hydrocortisone when my adrenal gland was removed. This helped me to come down from my high of all the hormones my body produced too much of all the time. I am currently taking 20 mg morning and evening. I am finally starting to wean myself off of it. The times in the past I have tried this have resulted in me being hospitalized, so I am praying that it works this time. Wonderful drug that gives me the strength and energy to make it through the day.
Probiotic: This is a nutritional supplement that an ER doctor suggested to me. I was having numerous bouts of pancreatitis and gastroparesis. The doctors cannot figure out why I got this issues. The only thing we can attribute it to is possibly the Cushing's messing up my body so much. This supplement has helped to greatly to be able to avoid the hospital, even when I have small bouts of these issues pop up.
Low dose Aspirin: This is to help with my heart health. Yes, another thing you can get because of Cushing's is heart problems. I am desperately trying to avoid them, but my family history is ugly with heart problems.
Trimethobenzamide or Tigan: This is my miracle drug. The worst bout of pancreatitis and gastroparesis I had resulted in me vomiting for over 36 hours straight. I was so dehydrated that I was dry heaving up stomach acids. It was exhausting me also because I was only sleeping in bouts of 10 - 15 minutes at a time and vomiting for about 30 minutes and repeat. The doctors had tried just about everything they could think of. The last hope was Tigan. If this didn't work I was going to have an NG tube. I did not want that. I prayed it would work. Luckily, the Tigan worked. I stopped vomiting and was able to get some rest. Whenever I get real nauseated I take the Tigan and it settles my stomach down.
Ondansetron ODT or Zofran: My other miracle medication to cease vomiting. One of these little beauties, dissolved under your tongue and it can keep sickness away. This usually works if I take one at the first feeling of nausea.
Ferrous Sulfate 325 mg or Iron: This helps me keep enough iron in my body. Another thing that Cushing's can do is deplete some of the vitamins and minerals that your body need. I have been admitted to the hospital and had to get IV iron and assorted other vitamins several times. So, now I have a prescription to try and keep my body replenished.
Vitamin D3: This helps with your immune health. Because of the Cushing's my immunity is deprived and basically sucks. With Cushing's and Diabetes to worry about any time I get sick, it is very hard on my body. So, I do all that I can to help my immunity out.
Vitamin C500 mg: Yet another vitamin to help my immunity out.
Metoprolol Tartrate: This medication helps out in a couple of ways. Because of the Cushing's I had an extremely high heart rate. I think at it's highest my heart rate was in the 180s. Metoprolol helps to slow down my heart rate to between 80 - 90. This is a much more acceptable heart rate. This medicine also helps with my high blood pressure. It has worked wonders and helped get the blood pressure under control.
Cicyclomine or Bentyl: this medicine helps with my stomach. It helps with indigestion and also with keeping my stomach working properly and stomach acids under control.
Pantoprazole or Protonix: This medication helps me with a couple of issues. It helps reduce stomach acids and helps with heartburn and acid reflux, both problems I had before I started using this. It also helps regulate the stomach acids and decreases the occurance of gastroparesis and pancreatitis. I have missed a couple of doses of this medication in the past and paid dearly with a horrendous case of gastroparesis. I have not missed a dose since.
Metformin: This is pill form to help keep blood sugar under control. It takes the medication and the insulin to help regulate my blood sugar.
Gabapentin: This is a wonder pill that helps with my diabetic neuropathy pain as well as my fibromyalgia. This pain can get pretty intense if left untreated. Luckily this medication works very well at alleviating this pain.
Butrans patch: I use the 20 mg patch once a week. It is a patch that I put on my back once a week to help with chronic pain in my lower back and body overall. I have 2 ruptured discs, 2 herniated discs, and degenerative back disorder, and arthritis in my lower back and my body. The Butrans patch helps me so much more than the Fentanyl and Morphine that I used to take for the same pain. I have become so much more functioning since starting the Butrans.
Suboxone: This is a strip that I dissolve under my tongue. It helps in conjunction with the Butrans patch to help with the pain. I still have pain, but we are still working on the right dosage of the Suboxone for me to take to get rid of as much pain as possible. This is a wonder strip. The instant the medication dissolves and goes into your blood stream it works instantly.
Each of these medicines help something in my body to work better and correctly. They help me be the person I am. A functioning, capable member of society . I still have pain and some issues, but with my medicines I am working on making a better functioning me.
Sunday, April 5, 2015
My Children's perspective....
The following blog is the result of collaborations with two of my wonderful children, Alyssa and Jimmy...
How Cushing’s affects children and their families:
So, I saw this question and really wanted to give people the chance to see this disease from my kids point of view. I ask my kids how this has affected them and this is what they told me.
Jimmy is my 8 year old son. He is currently in the 2nd grade. When I first started getting sick, in 2011, he was 4 years old. He turned 5 later that year and started pre-school. It was at the end of his pre-school year that I learned I had Cushing's Syndrome.
Jimmy says: I have missed a lot of his school performances either because of being in the hospital, or just in too much pain to function. At school performances it would upset him when he saw other kids with their parents and I, his mom, wasn't there for him. He says he felt like he had no one to talk to. He had no one who would listen to him. He didn't feel like he had anyone who he could trust to keep his secrets. So, he felt alone and like there was no one he could open up to.
Jimmy now has separation anxiety and panic attacks because of all the time I was away from him. He is currently in therapy for this and some abuse he suffered under the hands of the devil. The devil physically, verbally, and mentally abused him while I was in the hospital. I had no idea until last year when the FBI showed up at my house and things started coming out. Jimmy has trouble making friends at school because he has a low self esteem.
Every time I get sick, Jimmy get scared now. He's afraid I'm going to end up in the hospital again and he's unsure where he will be. Who will take care of him? He just doesn't know what to do. It is just really uncertain for him every day because there are so many things I have to do and so many medicines I have to take to function and be ok.
A few weeks ago we were able to walk to the park. I haven't been able to walk to the park in over 3 years. We were able to be there and played for 3 hours before we walked back home. Jimmy says it felt good and like he could actually move for once because he was at the park and able to play. So, there are good times ahead, but he still gets scared a lot and feels uncertain about things.
Alyssa is my 12 year old daughter. She is in the 6th grade now. When I first started having symptoms of Cushing's she was 8 years old and going through her personal hell. She was in the 3rd grade when this all started.
Alyssa says: Of course we cannot fail to mention that because of my illness the devil molested her. He used my illness against her. Told her that if she told me what he was doing the stress of the situation would make me so sick that it would kill me. Alyssa had just lost her father two to three years earlier so she was scared to death of losing me and therefore didn't tell me. When she did tell me was at the height of my symptoms of Cushing's and between the Cushing's, medication, and other things going wrong with me I had impaired judgment and did not do as I should have done. Alyssa begged me to not tell anyone. She didn't want the devil to be turned in. I didn't know at the time that this was because she was protecting me. The devil had convinced her that she loved him. She wanted a father so badly that she was afraid of losing him. She begged me not to turn him in. I talked to the devil and he assured he it would never happen again. I trusted him. I was scared myself of him killing me. He had me convinced I couldn't live without him. I was stupid and made a very stupid decision. I didn't want to further hurt Alyssa by making her go through telling more people about the abuse, so I kept quiet. That's a decision I will regret for the rest of my life. I was on so much medication that my memory was gone quickly of this and I didn't hear about it again until the FBI showed up at my house last year. That's when it came back to me and I told them about it. That's when this horrible, unspeakable wrong started to be righted.
She remembers that she had a friend that wanted to come over and spend the night, but she always had to tell her "no" because I was always in the hospital and because she wanted to protect her friend from the devil. It scared her that I was sick so much and always in the hospital. She didn't want me to die. She had had nutrition classes at school and she knew that the stuff I was eating was not good for me. I didn't eat much and I was laying in bed all the time. She was afraid I was going to get blood clots from not moving around and they would kill me. She remembers the nutrition teacher saying that if you don't eat at all and you don't move at all that you can end up dying from it.
Alyssa says she felt like an orphan. Because she had lost her father and I was in the hospital so much that it was like I didn't exist anymore. Most of the kids at school knew she didn't have a father because they had had a "Bring Your Father to School Day". All of the kids brought their father to school except Alyssa. She was the only one without a father. Most of the kids didn't know she had a mom because I was never there. I wasn't there for the holiday parties, or parent/teacher conferences, or even just to pick her up from school. She felt very isolated and alone. She felt like she didn't even exist because she felt so alone. She felt like she wasn't even there.
November 23, 2013... This was Alyssa's 11th birthday. It was supposed to be a day full of happiness and fun and unicorns. I remember taking her to Incredible Pizza for her birthday lunch. This was with our family. I remember paying for the meal and sitting down at a table feeling very shaky..... and that was it for a couple of days for me. Later in that day, I ended up in the ER unresponsive and near death. I had pneumonia, was in respiratory distress, kidney failure, respiratory failure, and the list goes on and on. I'm told I had IVs in my arms and legs and anywhere else they could stick them. The ER staff were scared I was on my way out. They sent me to ICU thinking I did not have long to live. I woke up a couple of days later on a ventilator. I spent a total of about 4 days in ICU and another 4 or 5 days after moving to a regular room.
She says she can remember her grandma and the devil taking me to the ER and then not seeing me for over a week. They told her she didn't want to see me like that. I had needles and tubes everywhere and they were afraid it would scare her. They told her she could not come up there to see me. One hell of a birthday for her. Her mother dies and has to be revived and put on a ventilator.
Alyssa has separation anxiety, panic attacks and has been suicidal as a result of my illness and frequent hospitalizations. She felt so scared at one point in time during the peak of my hospital stays and illness that she wanted to end it all and kill herself so that she wouldn't have to hurt so much anymore. She is currently in therapy for these things and she is making progress.
This disease has torn my family apart. Many of my family members don't believe that I can possibly be as sick as I am. They think it's gone on for too long and I should have been cured by now. There's no way a disease can make you this sick. They think I'm just lazy and don't want to get out and work. It is very hurtful the things that people can say and do. It's incredible how much they think they know about this disease. They aren't the ones living it. It takes someone very special, caring, dependable, and courageous to be there for those of us living with Cushing's. It is a true testament to unconditional love.....
How Cushing’s affects children and their families:
So, I saw this question and really wanted to give people the chance to see this disease from my kids point of view. I ask my kids how this has affected them and this is what they told me.
Jimmy is my 8 year old son. He is currently in the 2nd grade. When I first started getting sick, in 2011, he was 4 years old. He turned 5 later that year and started pre-school. It was at the end of his pre-school year that I learned I had Cushing's Syndrome.
Jimmy says: I have missed a lot of his school performances either because of being in the hospital, or just in too much pain to function. At school performances it would upset him when he saw other kids with their parents and I, his mom, wasn't there for him. He says he felt like he had no one to talk to. He had no one who would listen to him. He didn't feel like he had anyone who he could trust to keep his secrets. So, he felt alone and like there was no one he could open up to.
Jimmy now has separation anxiety and panic attacks because of all the time I was away from him. He is currently in therapy for this and some abuse he suffered under the hands of the devil. The devil physically, verbally, and mentally abused him while I was in the hospital. I had no idea until last year when the FBI showed up at my house and things started coming out. Jimmy has trouble making friends at school because he has a low self esteem.
Every time I get sick, Jimmy get scared now. He's afraid I'm going to end up in the hospital again and he's unsure where he will be. Who will take care of him? He just doesn't know what to do. It is just really uncertain for him every day because there are so many things I have to do and so many medicines I have to take to function and be ok.
A few weeks ago we were able to walk to the park. I haven't been able to walk to the park in over 3 years. We were able to be there and played for 3 hours before we walked back home. Jimmy says it felt good and like he could actually move for once because he was at the park and able to play. So, there are good times ahead, but he still gets scared a lot and feels uncertain about things.
Alyssa is my 12 year old daughter. She is in the 6th grade now. When I first started having symptoms of Cushing's she was 8 years old and going through her personal hell. She was in the 3rd grade when this all started.
Alyssa says: Of course we cannot fail to mention that because of my illness the devil molested her. He used my illness against her. Told her that if she told me what he was doing the stress of the situation would make me so sick that it would kill me. Alyssa had just lost her father two to three years earlier so she was scared to death of losing me and therefore didn't tell me. When she did tell me was at the height of my symptoms of Cushing's and between the Cushing's, medication, and other things going wrong with me I had impaired judgment and did not do as I should have done. Alyssa begged me to not tell anyone. She didn't want the devil to be turned in. I didn't know at the time that this was because she was protecting me. The devil had convinced her that she loved him. She wanted a father so badly that she was afraid of losing him. She begged me not to turn him in. I talked to the devil and he assured he it would never happen again. I trusted him. I was scared myself of him killing me. He had me convinced I couldn't live without him. I was stupid and made a very stupid decision. I didn't want to further hurt Alyssa by making her go through telling more people about the abuse, so I kept quiet. That's a decision I will regret for the rest of my life. I was on so much medication that my memory was gone quickly of this and I didn't hear about it again until the FBI showed up at my house last year. That's when it came back to me and I told them about it. That's when this horrible, unspeakable wrong started to be righted.
She remembers that she had a friend that wanted to come over and spend the night, but she always had to tell her "no" because I was always in the hospital and because she wanted to protect her friend from the devil. It scared her that I was sick so much and always in the hospital. She didn't want me to die. She had had nutrition classes at school and she knew that the stuff I was eating was not good for me. I didn't eat much and I was laying in bed all the time. She was afraid I was going to get blood clots from not moving around and they would kill me. She remembers the nutrition teacher saying that if you don't eat at all and you don't move at all that you can end up dying from it.
Alyssa says she felt like an orphan. Because she had lost her father and I was in the hospital so much that it was like I didn't exist anymore. Most of the kids at school knew she didn't have a father because they had had a "Bring Your Father to School Day". All of the kids brought their father to school except Alyssa. She was the only one without a father. Most of the kids didn't know she had a mom because I was never there. I wasn't there for the holiday parties, or parent/teacher conferences, or even just to pick her up from school. She felt very isolated and alone. She felt like she didn't even exist because she felt so alone. She felt like she wasn't even there.
November 23, 2013... This was Alyssa's 11th birthday. It was supposed to be a day full of happiness and fun and unicorns. I remember taking her to Incredible Pizza for her birthday lunch. This was with our family. I remember paying for the meal and sitting down at a table feeling very shaky..... and that was it for a couple of days for me. Later in that day, I ended up in the ER unresponsive and near death. I had pneumonia, was in respiratory distress, kidney failure, respiratory failure, and the list goes on and on. I'm told I had IVs in my arms and legs and anywhere else they could stick them. The ER staff were scared I was on my way out. They sent me to ICU thinking I did not have long to live. I woke up a couple of days later on a ventilator. I spent a total of about 4 days in ICU and another 4 or 5 days after moving to a regular room.
She says she can remember her grandma and the devil taking me to the ER and then not seeing me for over a week. They told her she didn't want to see me like that. I had needles and tubes everywhere and they were afraid it would scare her. They told her she could not come up there to see me. One hell of a birthday for her. Her mother dies and has to be revived and put on a ventilator.
Alyssa has separation anxiety, panic attacks and has been suicidal as a result of my illness and frequent hospitalizations. She felt so scared at one point in time during the peak of my hospital stays and illness that she wanted to end it all and kill herself so that she wouldn't have to hurt so much anymore. She is currently in therapy for these things and she is making progress.
This disease has torn my family apart. Many of my family members don't believe that I can possibly be as sick as I am. They think it's gone on for too long and I should have been cured by now. There's no way a disease can make you this sick. They think I'm just lazy and don't want to get out and work. It is very hurtful the things that people can say and do. It's incredible how much they think they know about this disease. They aren't the ones living it. It takes someone very special, caring, dependable, and courageous to be there for those of us living with Cushing's. It is a true testament to unconditional love.....
Saturday, April 4, 2015
Call the police, my life has been stolen
What three things has Cushing’s stolen from you? What do you miss the most? :
I have to think and try to narrow down my list because there are so many things that Cushing's has stolen from me. It makes me mad, sad, angry, grateful, happy, and confused just thinking about all the things Cushing's has done to me.
First, Cushing's has taken time away from me. It has taken the last two and a half years away from me. From the time I was diagnosed until after surgery and then beyond that I have lost time. Time that I was in a coma and on a ventilator and had no idea what was going on around me. Time when I was so tired because of this damn disease that all I could do was sleep and go to the bathroom. Sometimes I slept for days, only waking up to go to the bathroom. I didn't eat. I was too nauseated or vomiting too much. Time when I was hospitalized and missed out on parent/teacher conferences, school plays and performances, time after school when I could ask about my kids' day and help them with homework, holidays I spent in the hospital because of complications, and birthdays that I was in the hospital so I missed out on the celebrations.
Second, Cushing's has stolen my mind from me. I have major depression and anxiety issues because of Cushing's. My brain acts very crazy now and my emotions are so unpredictable. I can be happy and laughing one minute and in a full blown anxiety attack the next. I never know what will set me off. I do know some triggers. Balloons are one of my triggers. Hi, my name is Tammy and I am scared to death of balloons. It doesn't matter if they are inflated or not. They scare the crap out of me. If they are inflated it gets worse and if one is popped, watch out because I am going to be totally crazy and unglued. I don't know why, but they terrify me. I feel like I'm crazy and I've lost my mind. Another thing I am scared of is having my doors open or the windows open where people can see in my house. Scares me into a anxiety attack. Don't know why, just don't want people looking in at me. I can go into anxiety attacks anywhere. I have had to excuse myself from the table when I have been out with friends so I could go to the bathroom. I lock myself in a stall and fall apart. I have a full blown anxiety attack. After I get through it, I pull myself back together and then go back to the table. I would rather someone think I have bladder issues than to witness one of my anxiety attacks. The depression makes me want to sleep and not go anywhere. I have to force myself to get out every once in a while, just so I don't become reclusive and totally anti-social.
Third, Cushing's has stolen my life as I knew it. I had a tough life, but I was adjusting to it. My first husband died when I was 37 years old and he was 36. That was life changing for me. No more normal. I had to create a new normal for my children and myself. Then, just when things started to look up and we were starting to be happy again... Cushing's comes along and steal my life as I knew it. I was a part-time college student. I also worked part-time at The Library Center, one of about 10 libraries in the Greene County Library District. I was a circulation assistant and I absolutely loved my job. It was the kind of job that I got up looking forward to going to work. I worked with such beautiful, wonderful people that were more life family than co-workers. They were my wonderful friends and family. They helped me out so many times when I really needed it. When I was absolutely lost, they came through for me and showed me how much they cared and loved me. I miss them and my job so much. The library patrons, whether they were regular or someone I just saw one time, made my life interesting and I miss them also. Just the things I had planned that I wanted to do. I was going to college to become a middle school teacher. I wanted to make a difference in someone's life. I had to chuck those plans. Cushing's stole my ability to be able to make plans ahead of time because I don't know from one day to the next and sometimes from one moment to the next how I am going to feel. Am I going to have enough energy to do something? Life is so different now. I have so many things wrong with me that I have spent the majority of the last couple of years in the hospital. Certainly not life as I knew it before. Before Cushing's the only time I was hospitalized was for each of the births of my three children, when I had an appendectomy, when I had my gall bladder removed, and when I had my left ulnar nerve repaired (surgery on my elbow to relocate a nerve that was pinched into a spot it wouldn't pinch anymore.). Now, I have been in the ER and hospitalized so many times that I am well know to the doctors, nurses and PCA's and even some of the kitchen staff and housekeepers. I am now on Disability because of my illnesses and because I spend so much time in the hospital that there is no way I could be employed.
Cushing's stole my life because there was at one point that I was in a wheelchair to get around. I was so big I couldn't give myself a bath because I would get too exhausted. I couldn't do laundry, wash dishes, do any household chores. I was too tired and hurt too much all the time. Cushing's robbed me of just normal everyday life. The things most people take for granted, I couldn't do because of Cushing's.
What do I miss the most? The time I have lost because I know just how precious time is. I missed out on memories that I can never make now. My kids are growing up so fast and there is no way for me to make up for that missed time. I have missed out on first days of school and the report afterwards of how the school year was going to be. I even missed out on the daily grind, the normal stuff. I can't make memories off of the time I was in the hospital because of Cushing's. Or in bed sleeping and not functioning because of Cushing's. I know life is precious. It can be gone in the blink of an eye. You have to live life to the fullest and get everything you can out of it. You never know when something is going to happen and your life will change forever.
I have to think and try to narrow down my list because there are so many things that Cushing's has stolen from me. It makes me mad, sad, angry, grateful, happy, and confused just thinking about all the things Cushing's has done to me.
First, Cushing's has taken time away from me. It has taken the last two and a half years away from me. From the time I was diagnosed until after surgery and then beyond that I have lost time. Time that I was in a coma and on a ventilator and had no idea what was going on around me. Time when I was so tired because of this damn disease that all I could do was sleep and go to the bathroom. Sometimes I slept for days, only waking up to go to the bathroom. I didn't eat. I was too nauseated or vomiting too much. Time when I was hospitalized and missed out on parent/teacher conferences, school plays and performances, time after school when I could ask about my kids' day and help them with homework, holidays I spent in the hospital because of complications, and birthdays that I was in the hospital so I missed out on the celebrations.
Second, Cushing's has stolen my mind from me. I have major depression and anxiety issues because of Cushing's. My brain acts very crazy now and my emotions are so unpredictable. I can be happy and laughing one minute and in a full blown anxiety attack the next. I never know what will set me off. I do know some triggers. Balloons are one of my triggers. Hi, my name is Tammy and I am scared to death of balloons. It doesn't matter if they are inflated or not. They scare the crap out of me. If they are inflated it gets worse and if one is popped, watch out because I am going to be totally crazy and unglued. I don't know why, but they terrify me. I feel like I'm crazy and I've lost my mind. Another thing I am scared of is having my doors open or the windows open where people can see in my house. Scares me into a anxiety attack. Don't know why, just don't want people looking in at me. I can go into anxiety attacks anywhere. I have had to excuse myself from the table when I have been out with friends so I could go to the bathroom. I lock myself in a stall and fall apart. I have a full blown anxiety attack. After I get through it, I pull myself back together and then go back to the table. I would rather someone think I have bladder issues than to witness one of my anxiety attacks. The depression makes me want to sleep and not go anywhere. I have to force myself to get out every once in a while, just so I don't become reclusive and totally anti-social.
Third, Cushing's has stolen my life as I knew it. I had a tough life, but I was adjusting to it. My first husband died when I was 37 years old and he was 36. That was life changing for me. No more normal. I had to create a new normal for my children and myself. Then, just when things started to look up and we were starting to be happy again... Cushing's comes along and steal my life as I knew it. I was a part-time college student. I also worked part-time at The Library Center, one of about 10 libraries in the Greene County Library District. I was a circulation assistant and I absolutely loved my job. It was the kind of job that I got up looking forward to going to work. I worked with such beautiful, wonderful people that were more life family than co-workers. They were my wonderful friends and family. They helped me out so many times when I really needed it. When I was absolutely lost, they came through for me and showed me how much they cared and loved me. I miss them and my job so much. The library patrons, whether they were regular or someone I just saw one time, made my life interesting and I miss them also. Just the things I had planned that I wanted to do. I was going to college to become a middle school teacher. I wanted to make a difference in someone's life. I had to chuck those plans. Cushing's stole my ability to be able to make plans ahead of time because I don't know from one day to the next and sometimes from one moment to the next how I am going to feel. Am I going to have enough energy to do something? Life is so different now. I have so many things wrong with me that I have spent the majority of the last couple of years in the hospital. Certainly not life as I knew it before. Before Cushing's the only time I was hospitalized was for each of the births of my three children, when I had an appendectomy, when I had my gall bladder removed, and when I had my left ulnar nerve repaired (surgery on my elbow to relocate a nerve that was pinched into a spot it wouldn't pinch anymore.). Now, I have been in the ER and hospitalized so many times that I am well know to the doctors, nurses and PCA's and even some of the kitchen staff and housekeepers. I am now on Disability because of my illnesses and because I spend so much time in the hospital that there is no way I could be employed.
Cushing's stole my life because there was at one point that I was in a wheelchair to get around. I was so big I couldn't give myself a bath because I would get too exhausted. I couldn't do laundry, wash dishes, do any household chores. I was too tired and hurt too much all the time. Cushing's robbed me of just normal everyday life. The things most people take for granted, I couldn't do because of Cushing's.
What do I miss the most? The time I have lost because I know just how precious time is. I missed out on memories that I can never make now. My kids are growing up so fast and there is no way for me to make up for that missed time. I have missed out on first days of school and the report afterwards of how the school year was going to be. I even missed out on the daily grind, the normal stuff. I can't make memories off of the time I was in the hospital because of Cushing's. Or in bed sleeping and not functioning because of Cushing's. I know life is precious. It can be gone in the blink of an eye. You have to live life to the fullest and get everything you can out of it. You never know when something is going to happen and your life will change forever.
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